I clearly have not been on here in awhile. But I want to share how our homeschooling journey is going.
We completed one semester of school from Jan.-Jun this year and it went well. We started off with a very light load of just Language Arts and Math. I did this for a couple reasons. 1) To help us develop some routines and not feel completely overwhelmed and 2) Didn't want to spend the excess money to buy History, Science, Health and Bible curriculum that we would only use for 1/2 the year. Starting in mid-August we began our first full school year. Shana is now in 8th grade and Hunter is in 5th grade. Both kids are now completing Languagee Arts, Math (Shana is in Pre-Algebra and Hunter is completing 6th grade math), History, Science, and Bible. Hunter will have Health in the second semester.
Shana is doing particularly well and has found she likes being able to work and not be interrupted by other students. She prefers to just read the text and complete the assignments. She does ask questions as needed and is doing very well. Shana started 8th grade this fall and she is progressing nicely. She really enjoys her History course and is making inferences of how past history relates to current events. She is a very bright girl and I know has an amazing future ahead of her.
Hunter has been a bit more of an adjustment. Actually, it has been many adjustments. He has a hard time focusing on his work and we struggle through the entire day while he sits at the desk and doodles, rocks, hums, yells and kicks. We had a major meltdown yesterday, which required restraining him. I hate having to restrain him, it really doesn't help him to calm down and typically will escalate the meltdown, but I have to keep him, me and Shana safe. We had a lot of catch up work to do today and it was going badly. Until, I thought to try something. We've been trying all week with having him complete a certain number of lessons and then taking a break. The problem with this is that I would say to finish two math sheets and he could take a 10 minute break. But the two math sheets that should take about 10-20 minutes total, end up taking 2 hours of goofing off and me getting frustrated and then him getting frustrated.
Today I decided to try something new. I looked at the lessons and decided how long I think he needs to finish them. There were 6 LA's lessons and I thought each should take about 5 minutes. I set a timer for 30 minutes. Normally, having a timer will cause stress and anxiety, but I had a plan. I told him if the timer went off and he was very close to done (1-2 problems) then he would still get a 10 minute break, if he did the last two quickly. But if he finished before the timer went off he would get the 10 minute break, plus the time remaining for the lesson. He really liked this and did the first 6 lessons, that I had allotted 30 minutes for, in an amazing 8 minutes and 16 seconds. So, he was able to take a break for 31 min. 44 seconds. I simply restarted the timer (for the remaining 21m. 44s) and when it went off, I set it for another 10 minutes and told him he had ten more minutes of break time. He actually decided to come back from the break 30 seconds early and started on the next 4 lessons.
This is what homeschooling is for us. The ability to modify the way we do things to work best for the kids. Shana prefers to work hard from the start of school until she is done (maybe taking a break for lunch if needed). She would rather finish before or shortly after lunch and have the rest of the day to enjoy herself. This doesn't work for Hunter. I love having the ability to customize their routines for their individual needs. This is how an IEP should work, but when you have a class of 20+ kids the schools can't customize this way.
Friday, October 11, 2013
Wednesday, January 9, 2013
Homeschool Day 1
Today was our first official day of homeschooling. I was very worried at how today would go and it didn't start off great with our puppy being up all night and then waking up with a headache. But things improved. The kids woke up at 7am and started getting ready. We decided that an 8:30am start time was best. The school they went to previously was 8am and we were late everyday and rushing around the house. Being able to sleep that extra half-hour allowed them to wake up at a more reasonable pace and they got ready much quicker than usual.
At 8:15am both kids were sitting at the table ready to go, reading books and playing on their iPods. At 8:30am I asked them to put their things away and we got started. We talked about rules and what they are looking forward to in homeschooling. We also discussed how it will work with a 4th grader and a 7th grader and how that can help both of them. I described this as a "new adventure" for our family and asked them if adventures always go the way we plan. They both said no and we talked about how we will work together when there are bumps in the road.
When we got started on lessons they took to them very quickly and it was easier for me to manage the two different grades than I expected. I got Shana started on a reading assignment while working on an oral assignment with Hunter. I asked Shana if working with Hunter would distract her and she said "No, it's so much quieter even with you two talking than it was in school."
Hunter started to get frustrated and upset when he had some writing work to do. But when I explained it was only four questions and that was all he had to do for Language Arts he was shocked and quickly completed the work. He also breezed through his math in a matter of minutes. I be shortening the amount of math work per lesson and start doing multiple lessons per day to get him to more challenging work.
Shana had a spelling pretest and I decided to have Hunter try out the words too. Shana is very understanding that they are each unique and have strong and weak areas. Well, Hunter is strong in spelling and got 19/20 correct. Shana is not good in spelling and got 3/20 correct. Shana was fine because we quickly saw the pattern in her mistakes (i.e. bookkeeping/bookeeping, glowworm/gloworm) and she will easily do well on her spelling test next week. She was very proud of Hunter and made him feel really good doing so well on 7th grade spelling words.
Today we did start with a very basic schedule of just math and language arts, we will be adding science next week and we will add history later in the year. But we started their lessons at 8:30am and we finished by about 10:30. We actually spent less time completing their work for the day then we typically spent doing homework each night at their old school.
I'm sure there will be many ups and downs on this adventure, but I know now more than ever that we have made the right decision and are doing the very best for our kids.
At 8:15am both kids were sitting at the table ready to go, reading books and playing on their iPods. At 8:30am I asked them to put their things away and we got started. We talked about rules and what they are looking forward to in homeschooling. We also discussed how it will work with a 4th grader and a 7th grader and how that can help both of them. I described this as a "new adventure" for our family and asked them if adventures always go the way we plan. They both said no and we talked about how we will work together when there are bumps in the road.
When we got started on lessons they took to them very quickly and it was easier for me to manage the two different grades than I expected. I got Shana started on a reading assignment while working on an oral assignment with Hunter. I asked Shana if working with Hunter would distract her and she said "No, it's so much quieter even with you two talking than it was in school."
Hunter started to get frustrated and upset when he had some writing work to do. But when I explained it was only four questions and that was all he had to do for Language Arts he was shocked and quickly completed the work. He also breezed through his math in a matter of minutes. I be shortening the amount of math work per lesson and start doing multiple lessons per day to get him to more challenging work.
Shana had a spelling pretest and I decided to have Hunter try out the words too. Shana is very understanding that they are each unique and have strong and weak areas. Well, Hunter is strong in spelling and got 19/20 correct. Shana is not good in spelling and got 3/20 correct. Shana was fine because we quickly saw the pattern in her mistakes (i.e. bookkeeping/bookeeping, glowworm/gloworm) and she will easily do well on her spelling test next week. She was very proud of Hunter and made him feel really good doing so well on 7th grade spelling words.
Today we did start with a very basic schedule of just math and language arts, we will be adding science next week and we will add history later in the year. But we started their lessons at 8:30am and we finished by about 10:30. We actually spent less time completing their work for the day then we typically spent doing homework each night at their old school.
I'm sure there will be many ups and downs on this adventure, but I know now more than ever that we have made the right decision and are doing the very best for our kids.
Sunday, January 6, 2013
A Year of Changes!
It's been over a year since I was able to post to this blog. I want to change that as the blog really helps me in figuring some things out while sharing with others the challenges and joys of raising twice exceptional kids. I thought now was a good time to get recharged as we will be starting homeschooling with both of the kids starting this week. This has been something we have thought about for a long time, but really never had the means to do and thought the kids needed to have peer interaction in a school environment. I will cover this more later. Today I want to talk about what has happened in the last year to bring us to this decision.
Pat retired from the military and got a new job in NM. We had never planned to leave CO, I had lived there my entire life and had no desire to live anywhere else. His job requires a good amount of travel and when he is home we wanted to be able to see him some. He started looking at places and found a small town (population about 900) and a property with 44 acres off a river. It is what we have always dreamed about since the day we met. We put in an offer and I packed up and moved the kids and I while Pat was overseas.
At first things were going okay, until the kids got into school. Hunter did well with the smaller class sizes but Shana struggled with trying to fit into a school where everyone knows everyone and she was not doing well. The schools were trying to do what is best for the kids but they have very limited resources and have not ever worked with kids like them before. The schools are also very, very focused on sports and testing. This was hard as neither play sports and Shana felt pressured to join (she finally said she didn't want to) and is constantly asked why she isn't on the team. Shana was also devastated when they cut art and music for the middle school kids because the schools standardized test scores were so low that they are doing more "test prep" classes.
This is when we realized that our kids need something different. They are both bright, creative, inquisitive, and really excited to learn. However, we have seen for the last few years that the schools are trying to squish our unique shaped polygons into a square hole. They can't expand on topics or skip sections that they have already learned. There was no support in helping Shana with executive functioning to be able to remember to turn in homework, or prioritize work. Hunter struggled with being in the class when they were singing songs that he felt were for preschoolers. We also had struggles with make-up work when we took our family vacation. We take it during the time that Pat is home from trips and these don't always coincide with school breaks.
It just wasn't working.
In early October I decided that starting in January we would begin homeschooling the kids. I have mixed feelings about this. I am excited and looking forward to seeing the spark in their eyes as they begin to enjoy learning again for the love of learning, not the test. I'm nervous that I don't know enough or won't be good enough to teach them well. I am looking forward to the Biblical curriculum that spans all subjects (even the math word problems are a Christian perspective). I'm dreading not ever having a break from them and worried that will cause too much stress. I'm happy to get to spend such a wonderful time of their lives learning and growing with them.
I don't know exactly where this path will lead us, but I know in my heart that we are making the best decision for our kids.
Next post I will talk about how the school is working with us to provide wonderful resources for the kids and I while homeschooling.
Pat retired from the military and got a new job in NM. We had never planned to leave CO, I had lived there my entire life and had no desire to live anywhere else. His job requires a good amount of travel and when he is home we wanted to be able to see him some. He started looking at places and found a small town (population about 900) and a property with 44 acres off a river. It is what we have always dreamed about since the day we met. We put in an offer and I packed up and moved the kids and I while Pat was overseas.
At first things were going okay, until the kids got into school. Hunter did well with the smaller class sizes but Shana struggled with trying to fit into a school where everyone knows everyone and she was not doing well. The schools were trying to do what is best for the kids but they have very limited resources and have not ever worked with kids like them before. The schools are also very, very focused on sports and testing. This was hard as neither play sports and Shana felt pressured to join (she finally said she didn't want to) and is constantly asked why she isn't on the team. Shana was also devastated when they cut art and music for the middle school kids because the schools standardized test scores were so low that they are doing more "test prep" classes.
This is when we realized that our kids need something different. They are both bright, creative, inquisitive, and really excited to learn. However, we have seen for the last few years that the schools are trying to squish our unique shaped polygons into a square hole. They can't expand on topics or skip sections that they have already learned. There was no support in helping Shana with executive functioning to be able to remember to turn in homework, or prioritize work. Hunter struggled with being in the class when they were singing songs that he felt were for preschoolers. We also had struggles with make-up work when we took our family vacation. We take it during the time that Pat is home from trips and these don't always coincide with school breaks.
It just wasn't working.
In early October I decided that starting in January we would begin homeschooling the kids. I have mixed feelings about this. I am excited and looking forward to seeing the spark in their eyes as they begin to enjoy learning again for the love of learning, not the test. I'm nervous that I don't know enough or won't be good enough to teach them well. I am looking forward to the Biblical curriculum that spans all subjects (even the math word problems are a Christian perspective). I'm dreading not ever having a break from them and worried that will cause too much stress. I'm happy to get to spend such a wonderful time of their lives learning and growing with them.
I don't know exactly where this path will lead us, but I know in my heart that we are making the best decision for our kids.
Next post I will talk about how the school is working with us to provide wonderful resources for the kids and I while homeschooling.
Thursday, October 13, 2011
Socially Acceptable?
Hunter started in a social skills group about three weeks ago. I thought this would be a great opportunity for him to learn to participate in a group. I thought they would be working on turn taking, having a conversation, working with others and other similar skills. Hunter really needs something like this to help him as he is virtual schooled and does not have a lot of peers around. He really doesn't even have a friend.
The first day of the group I was not feeling great. I had an excruciating migraine and felt that this made me more irritable. So I blew off my concerns. During the group they were using "social stories" which I have seen used in many places including the NSC program he was in. The problem I quickly saw with these social stories in the group was that they do not teach the child what to do when the other person doesn't "follow the story". For example, the first lesson was on greetings. The story said that when we see someone the first time in a day we say "hi, how are you?". The story shows the other person saying "I'm fine, how are you?". It then talks about when we don't respond to the person saying hi it confuses them, so we should always reply to be friendly. The problem I see with this right off the bat, is if Hunter learns that he should say "Hi, how are you?" when he sees people, what happens when the other person walks by, or responds in a negative way. Hunter is very rigid on rules and when others don't follow them it frustrates him. The story doesn't cover what Hunter needs, he needs to know how to respond when the other person doesn't answer him. Do you get mad? Say "Hi" again? Keep walking? This is where it breaks down for Hunter.
Hunter had a meltdown the first day and the therapist told him if he ever did that during group that he would have to go home. How does this help him? It's like telling him "If you ever sneeze in our group you are going to have to go home". Hunter very much enjoyed being around the other kids and I'm not sure how he will ever learn to be around other kids if he always gets sent home. This was often the schools band-aid too. What has he learned from it? Throw a big fit and I get out of the situation that is frustrating me.
Well, he did have another big fit in the 3rd group, and we ended up in the ER for a psychiatric evaluation. We were sent home shortly after and told to try a different group. Hunter initially got upset because he didn't get to read a rule. He laid his head in his hands and cried. Then another child said he was making a rule of "no crying" this further upset Hunter and he cried louder. The therapist instead of comforting him or even praising him for not becoming violent told him "we don't do that in here you need to take a break in the hall". This caused Hunter to run out the door and start running around the building, screaming, kicking, biting and in general being out of control.
I spoke with Hunter after he calmed down and he said he thought he did what he was suppose to and he just cried. He asked me why was it not okay for him to cry?
I spoke with the therapist from the group and asked why Hunter wasn't praised when he cried initially instead of having a meltdown. She said that crying is not considered a socially acceptable way to react and that Hunter needed to take a break in the hall. This is when I realized that this group is about trying to teach an autistic child how to be socially acceptable ALL the time. This is not possible. I would like Hunter to learn how to talk to other kids, work with other kids and play with other kids. However, there is a point that when he is overwhelmed, if the one thing he can do is cry for a minute, or curl in a ball under the table (he did this the 1st week and was also told, we don't do that) until he calms down, is there anything wrong with that?
We are leaving for Disneyland in 10 days, and I have to say that I really don't give a damn if it is socially acceptable to curl into a ball in the middle of Main Street U.S.A when he gets frustrated. It will probably be more socially acceptable then having him running through the park hitting, kicking and biting people. I feel when he is frustrated he needs to find a way to calm down and if it isn't a "socially acceptable" way to do it, then that's just to bad! I want him safe and I really don't care what society says.
The first day of the group I was not feeling great. I had an excruciating migraine and felt that this made me more irritable. So I blew off my concerns. During the group they were using "social stories" which I have seen used in many places including the NSC program he was in. The problem I quickly saw with these social stories in the group was that they do not teach the child what to do when the other person doesn't "follow the story". For example, the first lesson was on greetings. The story said that when we see someone the first time in a day we say "hi, how are you?". The story shows the other person saying "I'm fine, how are you?". It then talks about when we don't respond to the person saying hi it confuses them, so we should always reply to be friendly. The problem I see with this right off the bat, is if Hunter learns that he should say "Hi, how are you?" when he sees people, what happens when the other person walks by, or responds in a negative way. Hunter is very rigid on rules and when others don't follow them it frustrates him. The story doesn't cover what Hunter needs, he needs to know how to respond when the other person doesn't answer him. Do you get mad? Say "Hi" again? Keep walking? This is where it breaks down for Hunter.
Hunter had a meltdown the first day and the therapist told him if he ever did that during group that he would have to go home. How does this help him? It's like telling him "If you ever sneeze in our group you are going to have to go home". Hunter very much enjoyed being around the other kids and I'm not sure how he will ever learn to be around other kids if he always gets sent home. This was often the schools band-aid too. What has he learned from it? Throw a big fit and I get out of the situation that is frustrating me.
Well, he did have another big fit in the 3rd group, and we ended up in the ER for a psychiatric evaluation. We were sent home shortly after and told to try a different group. Hunter initially got upset because he didn't get to read a rule. He laid his head in his hands and cried. Then another child said he was making a rule of "no crying" this further upset Hunter and he cried louder. The therapist instead of comforting him or even praising him for not becoming violent told him "we don't do that in here you need to take a break in the hall". This caused Hunter to run out the door and start running around the building, screaming, kicking, biting and in general being out of control.
I spoke with Hunter after he calmed down and he said he thought he did what he was suppose to and he just cried. He asked me why was it not okay for him to cry?
I spoke with the therapist from the group and asked why Hunter wasn't praised when he cried initially instead of having a meltdown. She said that crying is not considered a socially acceptable way to react and that Hunter needed to take a break in the hall. This is when I realized that this group is about trying to teach an autistic child how to be socially acceptable ALL the time. This is not possible. I would like Hunter to learn how to talk to other kids, work with other kids and play with other kids. However, there is a point that when he is overwhelmed, if the one thing he can do is cry for a minute, or curl in a ball under the table (he did this the 1st week and was also told, we don't do that) until he calms down, is there anything wrong with that?
We are leaving for Disneyland in 10 days, and I have to say that I really don't give a damn if it is socially acceptable to curl into a ball in the middle of Main Street U.S.A when he gets frustrated. It will probably be more socially acceptable then having him running through the park hitting, kicking and biting people. I feel when he is frustrated he needs to find a way to calm down and if it isn't a "socially acceptable" way to do it, then that's just to bad! I want him safe and I really don't care what society says.
Wednesday, September 21, 2011
Letting Go
I've started several posts and just haven't been able to get writing. I've fallen into a slump with the kiddos since school started and I hate blogging about the negative. But it is a fact of our lives and I really need to vent some of this out and start thinking it through.
School started for both kids toward the end of August. It's been a bumpy (think large craters) for both kids. Shana hasn't done too bad, although she was suspended by the second week of school. I try to think back to my middle school years and honestly don't recall anyone ever being suspended in middle school (high school, yes, middle, no). I'm happy that the school handled it well and even looked at the triggers and found that she was often flustered in first period and that set the tone for the day. She now goes to the counseling office for first period and catches up on homework, reads or even eats breakfast. This has helped although there are still minor bumps, but I think she is starting to get use to the schedule.
Hunter has been another story. Virtual schooling has been tough this year. He is not motivated to work and goofs around every chance he gets. I'm getting frustrated having to sit with him every minute of the day. I can't even go put on a load of laundry and trust that he will stay on task. He has also been having more and more aggressive meltdowns. A couple weeks ago we ended up back in Children's Hospital after a 45 minute meltdown during his therapy appointment. He is starting to run away during meltdowns and I am getting worried for his safety.
It is so very hard and I beat myself up everyday trying to figure out what I am doing wrong. All the doctors and therapists say we need a schedule and I am doing my best, but sometimes life just can't be scheduled. We have things pop up; oversleep, sick, phone calls, visitors etc. How can I possibly schedule every minute of our life? If I try will it help? Right now with the plans to move out of state and everything we need to get done our lives are in utter chaos and I can't even figure out what I need to do, let alone schedule every minute of my day. I am sure this is adding to the stress and anxiety levels of both the kids, even though they are excited about the move.
I'm also feeling a little distant from God right now. I trust God and I want to follow His plan, but I honestly have no idea what I'm suppose to be doing right now. I'm torn between two things and I can't figure out what is right and what is wrong. I'm really blind in the direction I'm going and just pray that He is leading the way. I think I'm fighting for safety, security and comfort and have to let go and risk a little. This is hard with these kids, because I already feel like we've made many errors and missed many opportunities and I don't want to make another big mistake. Of course, if I keep following the safe path, maybe that would be the big mistake. I'm going to have to let go and just trust that this is our path, I think it's where I'm being led, but just am not quite ready for.
School started for both kids toward the end of August. It's been a bumpy (think large craters) for both kids. Shana hasn't done too bad, although she was suspended by the second week of school. I try to think back to my middle school years and honestly don't recall anyone ever being suspended in middle school (high school, yes, middle, no). I'm happy that the school handled it well and even looked at the triggers and found that she was often flustered in first period and that set the tone for the day. She now goes to the counseling office for first period and catches up on homework, reads or even eats breakfast. This has helped although there are still minor bumps, but I think she is starting to get use to the schedule.
Hunter has been another story. Virtual schooling has been tough this year. He is not motivated to work and goofs around every chance he gets. I'm getting frustrated having to sit with him every minute of the day. I can't even go put on a load of laundry and trust that he will stay on task. He has also been having more and more aggressive meltdowns. A couple weeks ago we ended up back in Children's Hospital after a 45 minute meltdown during his therapy appointment. He is starting to run away during meltdowns and I am getting worried for his safety.
It is so very hard and I beat myself up everyday trying to figure out what I am doing wrong. All the doctors and therapists say we need a schedule and I am doing my best, but sometimes life just can't be scheduled. We have things pop up; oversleep, sick, phone calls, visitors etc. How can I possibly schedule every minute of our life? If I try will it help? Right now with the plans to move out of state and everything we need to get done our lives are in utter chaos and I can't even figure out what I need to do, let alone schedule every minute of my day. I am sure this is adding to the stress and anxiety levels of both the kids, even though they are excited about the move.
I'm also feeling a little distant from God right now. I trust God and I want to follow His plan, but I honestly have no idea what I'm suppose to be doing right now. I'm torn between two things and I can't figure out what is right and what is wrong. I'm really blind in the direction I'm going and just pray that He is leading the way. I think I'm fighting for safety, security and comfort and have to let go and risk a little. This is hard with these kids, because I already feel like we've made many errors and missed many opportunities and I don't want to make another big mistake. Of course, if I keep following the safe path, maybe that would be the big mistake. I'm going to have to let go and just trust that this is our path, I think it's where I'm being led, but just am not quite ready for.
Tuesday, July 12, 2011
It's a Blessing and a Curse (but really just a blessing)
I figured it has been a bit since I posted. The last few days Hunter was in treatment I was very sick. I couldn't even get off the couch for two days and the following week was limited. This wasn't the greatest way to end his treatment and reenter back to normal life, but we had to make do.
The last two weeks have been tough being fairly sick during most of it. But we have started making good progress on Hunter's schedules. We are using picture schedules, I really didn't think with his age and intelligence that he would still need these. When he was 2-3 we used these and they helped him some but as he got older we eliminated the pictures. I found out that when he is frustrated or even sometimes not the pictures help him to focus and see what is coming easier. I have been creating little one-inch cards with pictures of everything from waking up, brushing teeth, Wii, dinner etc. It is very complicated as I seem to miss things, like tonight we realized we don't have a "go to bed". Wow, that's an important one to miss.
I've talked with Shana and she thinks that she would also like to use this system. Although she is a little nervous about what other kids her age will think if they see it. We are planning to put it in a notebook so she can peek at it when she needs it. I feel this will help in middle school and ease the anxiety of remembering where she is suppose to be next. I will have to call the middle school to see if I can get pictures of things like her classrooms, teachers, locker, etc to make cards that are very accurate to her surroundings.
Middle school should be a fresh start for Shana and I hope it is a good start for her. She will be leaving the friends she had at her elementary school as they will all be going to a different school. But she will have some Girl Scout friends that she has known since kindergarten and gets along with pretty well. I hope that it will be positive for her and that she is able to put the past behind her, it's a lot to get past. We talked tonight about not dwelling on things because then it gives the people that have teased or bullied her power, even now when they are no longer around. I hope these things help her in the coming year. We will continue talking and trying to find ways to make middle school a success for her.
I had a couple really bad days the last couple weeks where I yelled pretty good and lectured way too much with the kids. I feel like I am patient and calm for awhile and then it builds, I don't think being sick helped this at all. I am working at relieving this but it is a little harder with Pat in NM. I don't get a chance to just relax on my own or go do something for me. I am in the process of finding respite care so that I am able to have a little time to relax, go see a movie or something else I enjoy.
I am looking forward to beginning summer finally. We only have about 5 weeks left before both kids head back to school. I only have about 3 weeks that I can do fun things before we have to start preparing for the new school year. I will be virtual schooling Hunter again and I have a ton of new ideas for helping ease some of the struggles we had last year, although I am not looking forward at all to writing. That is the one area Hunter really struggles, although when he writes the work is amazing.
I feel blessed that God felt that I deserved these children. I often watch Monk and if you haven't seen it he is a highly obsessive compulsive man, but because of that is incredibly detailed and is able to see things others don't and solve crimes. There's a line he says that it's "a blessing and a curse". I've often thought this with what the kids have to deal with. It's easy to see the curse part of it and even this week Shana told me she didn't want to have these disabilities and she just wanted to be "normal". I can't tell you how heartbreaking it was (I have often prayed that if it's God's will He would heal them both). I told her that God doesn't make mistakes and she is the perfect little girl that God made her to be. I also said that God must think she is pretty special and strong to make her so unique and that when she trusts in God and understands this isn't a curse but a blessing in disguise she will be able to do anything she sets her mind to.
There are times I sadly only see the curse side myself and that I don't understand, but then I turn back to God and pray for His understanding and I am able to thank Him for those difficult days because without them I would never truly see the blessings we have been given in these children. Each of them is so uniquely blessed and I see many things daily that show me exactly how special they really are!
The last two weeks have been tough being fairly sick during most of it. But we have started making good progress on Hunter's schedules. We are using picture schedules, I really didn't think with his age and intelligence that he would still need these. When he was 2-3 we used these and they helped him some but as he got older we eliminated the pictures. I found out that when he is frustrated or even sometimes not the pictures help him to focus and see what is coming easier. I have been creating little one-inch cards with pictures of everything from waking up, brushing teeth, Wii, dinner etc. It is very complicated as I seem to miss things, like tonight we realized we don't have a "go to bed". Wow, that's an important one to miss.
I've talked with Shana and she thinks that she would also like to use this system. Although she is a little nervous about what other kids her age will think if they see it. We are planning to put it in a notebook so she can peek at it when she needs it. I feel this will help in middle school and ease the anxiety of remembering where she is suppose to be next. I will have to call the middle school to see if I can get pictures of things like her classrooms, teachers, locker, etc to make cards that are very accurate to her surroundings.
Middle school should be a fresh start for Shana and I hope it is a good start for her. She will be leaving the friends she had at her elementary school as they will all be going to a different school. But she will have some Girl Scout friends that she has known since kindergarten and gets along with pretty well. I hope that it will be positive for her and that she is able to put the past behind her, it's a lot to get past. We talked tonight about not dwelling on things because then it gives the people that have teased or bullied her power, even now when they are no longer around. I hope these things help her in the coming year. We will continue talking and trying to find ways to make middle school a success for her.
I had a couple really bad days the last couple weeks where I yelled pretty good and lectured way too much with the kids. I feel like I am patient and calm for awhile and then it builds, I don't think being sick helped this at all. I am working at relieving this but it is a little harder with Pat in NM. I don't get a chance to just relax on my own or go do something for me. I am in the process of finding respite care so that I am able to have a little time to relax, go see a movie or something else I enjoy.
I am looking forward to beginning summer finally. We only have about 5 weeks left before both kids head back to school. I only have about 3 weeks that I can do fun things before we have to start preparing for the new school year. I will be virtual schooling Hunter again and I have a ton of new ideas for helping ease some of the struggles we had last year, although I am not looking forward at all to writing. That is the one area Hunter really struggles, although when he writes the work is amazing.
I feel blessed that God felt that I deserved these children. I often watch Monk and if you haven't seen it he is a highly obsessive compulsive man, but because of that is incredibly detailed and is able to see things others don't and solve crimes. There's a line he says that it's "a blessing and a curse". I've often thought this with what the kids have to deal with. It's easy to see the curse part of it and even this week Shana told me she didn't want to have these disabilities and she just wanted to be "normal". I can't tell you how heartbreaking it was (I have often prayed that if it's God's will He would heal them both). I told her that God doesn't make mistakes and she is the perfect little girl that God made her to be. I also said that God must think she is pretty special and strong to make her so unique and that when she trusts in God and understands this isn't a curse but a blessing in disguise she will be able to do anything she sets her mind to.
There are times I sadly only see the curse side myself and that I don't understand, but then I turn back to God and pray for His understanding and I am able to thank Him for those difficult days because without them I would never truly see the blessings we have been given in these children. Each of them is so uniquely blessed and I see many things daily that show me exactly how special they really are!
Tuesday, June 28, 2011
28 Days!
28 Days!
That's the number of days that Hunter spent in the Neuropsychiatric Special Care Unit as either an inpatient or day treatment patient. In the last 28 days I have gone through a total transformation in my thinking, reacting and responding to Hunter. Funny thing is everything I learned, I really already knew, but for whatever reason kept trying to act as though I had neurotypical children. Faulty thinking results in faulty handling of the situation.
Tonight at church Hunter had a rough night in the children's group. I ended up bringing him into the main service with me. This was the most rewarding moment I've experienced in the last several months. During the service a video of a song was played (dang I can't remember which one) and he reached over and grabbed my hand and gently swung our hands throughout the song. During the final worship song he was standing on the chair next to me and I began praying for Jesus to continue to give me strength during the difficult days and to help me find a way to help the world better understand these children.
In the last 28 days I have realized, or realized again as I seemed to have fallen into the faulty thinking that Hunter was a typical child and should be able to handle all situations the same as his age or emotional peers. I realize now that he will always and forever have autism. He may learn coping strategies and be able to handle more and more situations as he gets older but there are some things he may never learn how to handle. For those things we will just have to alter the thinking and change the plan. As he learns I will praise God for each little milestone. This may be going in a corner and screaming instead of hitting, biting or kicking. It may be handling getting blood drawn and only screaming for 2 minutes instead of 2 hours. Each of these little milestones means we are on the right track and making progress.
To finish this off today I'm going to list 28 things I want to Praise God for in the last 28 days.
1) The wonderful caring staff at the NSC, they truly understand and love these wonderful children!
2) My wonderful hubby that is working hard far away from home but by doing so has made the last 28 days possible.
3) My son holding my hand during the song at church!
4) Picture Schedules
5) Iceberg Analogy
6) The parents of the other children in the program, we've laughed, cried and celebrated with each other and we understand each other.
7) The other children in the program, these children are all unique wonderful gifts from God.
8) Less-Preferred Activities (Brushing Teeth) followed by Preferred (Wii)!
9) That my son was not born 30 years ago when no one knew what to do with these kids, not even the doctors.
10) Family that understands and loves my kids.
11) Good hospital food that is actually a preferred activity after a blood draw.
12) Two blood draws with little or no problem (thanks to #11)
13) Puppy stickers at the front desk of the hospital (Hunter has 28 of them)
14) Carlos - the young man that checks you in at the front desk and happily gave Hunter 28 puppy stickers (even extra when he lost some)
15) Social Stories
16) Eye drops going from major tantrum to him being so proud of how well he does when he gets them.
17) Mom Time
18) Finally learning to tie shoes, oh we are not even close, but he tries now without a meltdown (little milestones)
19) Going to the salon with Shana
20) My Pastor taking Hunter for a soda
21) Being an advocate for my kids
22) K-Love for all the right songs at the right times and rockin' out on the way to the hospital with no kids in the car (they don't like the music loud)
23) Everyone at church and everywhere else that prayed for us - I can't even put to words how much this did for me.
24) Being able to finally start summer!
25) Fidget toys
26) Quiet space (for Hunter and Mama)
27) This blog for helping me finally be able to tell everyone what life is really like with twice exceptional kids.
28) All of you that read the blog and encourage me on a regular basis!
I know I am missing so many things, as there were a lot more blessings than 28, but these are what came to mind tonight. Tomorrow is a new day and I know it is going to be full of many more! Praise God!
Wednesday, June 22, 2011
The Light is Shining Bright!
It always seems that our summers are never the lazy days of many other families I know. This summer has been no exception. Hunter finished school toward the end of May and was only out for a week before he entered the day treatment program on June 1st. I can't believe he has been in the program either as day treatment or inpatient for 23 days. The time has flown by and I am amazed at how well he is doing. We are hoping for another great day tomorrow (today was fantastic!) so he is able to graduate on Friday. Funny thing is I wish he could stay as the things he is learning as well as the things I am learning are so important and I'm a little afraid to leave the safety of the program.
I believe that God is working in this program and that He has blessed the staff that work with these wonderful children with a very special gift. Our children have been called bad, bullies, mean, manipulative, snotty, rude, inconsiderate, uncaring and brats. They have been bullied, teased, picked on, laughed at, rejected and ignored. They have been disciplined, suspended and expelled. Schools don't understand them and don't know what to do with them.
The staff at the program Hunter is in are caring, understanding and really see these children for who they really are, the special children that God created and gave these gifts and challenges. They see their intelligence and laugh with the parents at their antics. They see that the children are all so similar and yet so very different. They talk to you with understanding and help you feel comfortable in what is a very uncomfortable place to be.
As busy as we have been in the last 23 days, our family is happy, we are having fun and being more productive. I am not going to bed drained of every ounce of energy from dealing with the stress of two twice exceptional kids. I am enjoying my days with them and am looking forward to the day we move to be with Daddy so we can all be together again. But for now I am so thankful that God has opened up these opportunities and made our path clear even though it seems so wrong not having the whole family here. The light is shining bright and I fully intend to keep it that way by looking to my Lord and Savior Jesus Christ who has given me the strength to get through these difficult weeks.
I believe that God is working in this program and that He has blessed the staff that work with these wonderful children with a very special gift. Our children have been called bad, bullies, mean, manipulative, snotty, rude, inconsiderate, uncaring and brats. They have been bullied, teased, picked on, laughed at, rejected and ignored. They have been disciplined, suspended and expelled. Schools don't understand them and don't know what to do with them.
The staff at the program Hunter is in are caring, understanding and really see these children for who they really are, the special children that God created and gave these gifts and challenges. They see their intelligence and laugh with the parents at their antics. They see that the children are all so similar and yet so very different. They talk to you with understanding and help you feel comfortable in what is a very uncomfortable place to be.
As busy as we have been in the last 23 days, our family is happy, we are having fun and being more productive. I am not going to bed drained of every ounce of energy from dealing with the stress of two twice exceptional kids. I am enjoying my days with them and am looking forward to the day we move to be with Daddy so we can all be together again. But for now I am so thankful that God has opened up these opportunities and made our path clear even though it seems so wrong not having the whole family here. The light is shining bright and I fully intend to keep it that way by looking to my Lord and Savior Jesus Christ who has given me the strength to get through these difficult weeks.
Wednesday, June 15, 2011
Hunter is Home!
Hunter was in the Neuropsychiatric Special Care Unit at Children's as an inpatient for a week and a half. It was so hard leaving him. He had never been away from home and it broke my heart to think that my sweet little 8-year-old boy had to be in a special care unit.
I've shed a lot of tears and done a lot of praying and have come to a few conclusions.
First, I know without a doubt that God is working in our lives! As I mentioned a few posts ago the last years we had drifted away from church and were not trusting God to lead us. During Hunter's stay I have been praying constantly. Even when I'm doing other things my mind is actively praying, I've never really done that before, it's like I can't shut it off. I also know our church and many of my friends and family have been praying. Hunter told me when we were in the car that the prayers worked. I didn't prompt him or tell him that we had all been praying, he simply said that the prayers worked. When I asked what he meant he said that on Sunday night he "felt" the prayers work and that God helped him. He said he felt different. I know this isn't the end of the road and I'm sure we will have many meltdowns and challenges ahead but I know without a doubt that with God's strength we will get through and find ways to help Hunter.
I also realized that we allowed ourselves to be sidetracked in how we looked at the kids. During the fight with the schools it was very difficult to get anyone to look at anything but the behaviors. The NSC unit uses a diagram of an iceberg to demonstrate the problem with this. We all know that the Titanic was sunk by what appeared to be a small iceberg on the surface of the water. How could such a small thing sink such a large ship? Well, it wasn't the surface iceberg that sank the ship, it was the part of the iceberg that was under the surface that sank the ship. Only the tip of the iceberg shows on the surface. With kids like Hunter the tip of the iceberg is the behaviors that present outwardly (hitting, kicking, biting etc). But when you look below the surface there may be a much bigger base to the iceberg that is the root cause of the problem (medical, neurological, sensory, communication etc). If you only treat the tip of the iceberg you never get to the big part of the iceberg that can actually sink the ship.
It took us over a year of fighting the school just to get them to change his IEP to show as autism and not social, emotional, behavioral. We repeated over and over that the root cause for his behaviors was autism and if they only treated it as behavioral then they would never fix the problem. The school system is actually set up in such a way that is difficult for these kids to succeed. We began treating the problems as behavioral ourselves out of frustration and lack of support. We didn't intend to, but there didn't seem to be other options. The schools are overloaded and don't have the resources to work with these kids and they lump them into programs that don't work because that's all they have to offer. It is hard to fight to get the kids in schools for autism and budget cuts are destroying some of these remarkable children.
My plan right now is to focus on my children and get them doing well. But I see a problem in our school system and the way these children can be shuffled through the schools and not given the care that they need. They are being left behind and there need to be programs designed for children on the spectrum. I will be praying about the direction I need to go and in the meantime focus my attention to make sure my two are out of crisis mode.
I've shed a lot of tears and done a lot of praying and have come to a few conclusions.
First, I know without a doubt that God is working in our lives! As I mentioned a few posts ago the last years we had drifted away from church and were not trusting God to lead us. During Hunter's stay I have been praying constantly. Even when I'm doing other things my mind is actively praying, I've never really done that before, it's like I can't shut it off. I also know our church and many of my friends and family have been praying. Hunter told me when we were in the car that the prayers worked. I didn't prompt him or tell him that we had all been praying, he simply said that the prayers worked. When I asked what he meant he said that on Sunday night he "felt" the prayers work and that God helped him. He said he felt different. I know this isn't the end of the road and I'm sure we will have many meltdowns and challenges ahead but I know without a doubt that with God's strength we will get through and find ways to help Hunter.
I also realized that we allowed ourselves to be sidetracked in how we looked at the kids. During the fight with the schools it was very difficult to get anyone to look at anything but the behaviors. The NSC unit uses a diagram of an iceberg to demonstrate the problem with this. We all know that the Titanic was sunk by what appeared to be a small iceberg on the surface of the water. How could such a small thing sink such a large ship? Well, it wasn't the surface iceberg that sank the ship, it was the part of the iceberg that was under the surface that sank the ship. Only the tip of the iceberg shows on the surface. With kids like Hunter the tip of the iceberg is the behaviors that present outwardly (hitting, kicking, biting etc). But when you look below the surface there may be a much bigger base to the iceberg that is the root cause of the problem (medical, neurological, sensory, communication etc). If you only treat the tip of the iceberg you never get to the big part of the iceberg that can actually sink the ship.
It took us over a year of fighting the school just to get them to change his IEP to show as autism and not social, emotional, behavioral. We repeated over and over that the root cause for his behaviors was autism and if they only treated it as behavioral then they would never fix the problem. The school system is actually set up in such a way that is difficult for these kids to succeed. We began treating the problems as behavioral ourselves out of frustration and lack of support. We didn't intend to, but there didn't seem to be other options. The schools are overloaded and don't have the resources to work with these kids and they lump them into programs that don't work because that's all they have to offer. It is hard to fight to get the kids in schools for autism and budget cuts are destroying some of these remarkable children.
My plan right now is to focus on my children and get them doing well. But I see a problem in our school system and the way these children can be shuffled through the schools and not given the care that they need. They are being left behind and there need to be programs designed for children on the spectrum. I will be praying about the direction I need to go and in the meantime focus my attention to make sure my two are out of crisis mode.
Sunday, June 12, 2011
One Week Without My Little Boy
It has been one week since Hunter was admitted to the inpatient care unit. The doctors were thinking on Friday that if he continued on the "upward slope" over the weekend that he may have been ready to come home on Tuesday. Unfortunately, he has not had a very good weekend. He has had many meltdowns and some for quite a long time. I won't talk to the doctors until tomorrow, but Tuesday is not looking good at this point.
Daddy came home for the weekend just to go see Hunter in the hospital. I think it was really bothering him being so far from home while his little boy was not at home. I think Daddy had the same reactions I had last week and it was hard for him. They did have good visits and Hunter was thrilled to see him.
Tonight when we went to see Hunter they told us he was really sleepy and was laying down in his room. They have been giving him a medication that dissolves in his mouth when he is having a meltdown and is suppose to help him calm down. Last week one time he got the med they said he had taken an hour long nap that day. Tonight when we saw him, he was in the bed and was awake but very lethargic. This really bothered both Daddy and I. It didn't seem like he was tired as much as he seemed drugged. His little hands were limp and his movements were not typical for him. This bothers us very much and I will be notifying the hospital that I no longer want this medication used. It doesn't seem to be effective in calming him down during a meltdown and I have never wanted my kids on meds that change their personality or make them appear drugged.
Today was hard for Shana too. She was heading to camp today, which she loves, but things seemed to just start out bad in the morning. I woke her up and asked her to get a shower and get dressed. We had picked out the jeans she would wear a few days ago and I pulled one of the extra shirts that we didn't pack. She got very upset about the shirt and the jeans (even though she picked them for today) and it turned into half-an-hour of complaining about everything. She finally pulled it together and took a shower and got dressed. When we arrived at the camp, she got out of the car and got all worked up about whether they would play the name game. I believe at this point her anxiety level rose out of fear for doing the game with the other girls. Again it took me nearly 30 minutes to get her calmed down and decide if she would stay. She loves camp, but I think she would love it more if there were no other girls there. She likes other girls, but really gets anxious in social situations and doesn't know what to do.
I have to say this all really sucks. I saw so many of my friends enjoying days at the lake, pool or just out enjoying the beautiful weather. Our weekend was nothing like this. Of course this is typical for us and is often the reason I feel so stressed. I would love to have some fun family weekends but they are rare. Even when we plan some fun things to do, often they fall apart before we ever get out the door, or there are meltdowns during the day. It tends to spoil the day and it often causes us to not plan anything else for a little while.
Today I am a little down, but still know that God has a plan and that it is perfect. It doesn't feel perfect today and it may be a long time before I understand how days like this fit His plan and I may never really know. I will continue to pray for healing and for the doctors to help us find some answers for the kids and some peace for our whole family.
Thursday, June 9, 2011
Roller Coaster Life
The last week has been like a roller coaster. There have been many ups and downs, twists and turns and probably a few loops and I'm sure we have jumped the track a few times. In a one week period of time we have gone from Hunter entering day treatment for what I thought would be a couple weeks, to inpatient care for three days so far and from what they are saying today a minimum of four more. After which he will return to the day treatment for a minimum of a week or two. I have been on the phone, back and forth to the hospital for meetings, classes and visits with Hunter. They have started meds and increased the meds already. I can only pray that this is going to have an impact and help him improve. He is already crying saying he wants to come home and although it's the truth, it is hard to tell him he has to stay there until he can be safe. An 8-year-old should not have to be told he can't come home until he is safe. An 8-year-old should be out in the back yard playing with his dog, jumping on the trampoline, playing Wii, or playing a board game with his sister or friends.
It's been hard for me to figure out what was bothering me so much about this whole thing. It wasn't that he was in the treatment center or the level of care. But something has been just eating at me. Tonight I realized that I think I'm having a hard time coming to grips with the fact that we have to return to a very rigid structured routine with not only Hunter but Shana too. We seemed to reach a point where the kids were able to do many things for themselves. Now I'm realizing that they really need more support. They can still do the things themselves but they need schedules and mini-schedules to be able to complete the tasks. For those that don't know a mini-schedule is a schedule for something on a main schedule, such as brushing teeth. The main schedule would say to brush teeth the mini-schedule would have each step of brushing (rinse brush, toothpaste on, brush top, side, bottom etc.).
I was a very independent child and did many things for myself. I was a latch-key child and got up for school on my own, got ready and walked to school (I'm really not trying to use the old "up hills both ways" speech, only demonstrating the difference). After school I made my own snack (homemade vanilla pudding, and I ate it hot off the stove, I don't know if you still call that pudding but it tasted great) and often went to the store and bought groceries for and cooked my own dinner. It's been hard for me to not expect the kids to be more independent as I had so much at such an early age. I have tried to give them more independence but I have been doing it the wrong way. I expected them to be able to handle some of the things other kids their age can do but didn't realize they need the steps broken down more than the average child.
I'm also worried about Shana. She has been becoming increasingly difficult and although I'm sure part of it is puberty changes I know most the other girls her age do not respond the way she does. Today we went into the hospital for a family visit and Shana became very agitated at Hunter and got very upset. Again it's nice that they show their "true colors" in these environments, but I'm really starting to feel lost again. On the way home Shana got upset when I was trying to talk to her about a Girl Scout opportunity that will be next summer. We have to fill out an application by tomorrow and I'm trying to determine whether she really wants to go or not. She became more and more upset with me when asking simple questions and I finally had to just ignore her completely. This of course agitated her more but I figure eventually she will calm down and talk to me about it. If not, then I guess I will not complete the application and we will not do the event.
I wish there were a few simple answers in this. Even the staff at the program Hunter is in are confused by his behaviors. This is because one day something that causes a meltdown the next day he handles fine but the next it's a problem again. It's very hard to predict at all what will trigger a meltdown in either child. This ever changing challenge is clearly more then I can handle. I am still leaning on God and praying for answers. I know this is all part of his plan and that he is providing me strength to get through each day, sometimes each moment. I'm so sad to leave my little baby boy in the hospital and not be able to hug and tuck him in for bed each night. God give me strength because I still can't do this alone.
It's been hard for me to figure out what was bothering me so much about this whole thing. It wasn't that he was in the treatment center or the level of care. But something has been just eating at me. Tonight I realized that I think I'm having a hard time coming to grips with the fact that we have to return to a very rigid structured routine with not only Hunter but Shana too. We seemed to reach a point where the kids were able to do many things for themselves. Now I'm realizing that they really need more support. They can still do the things themselves but they need schedules and mini-schedules to be able to complete the tasks. For those that don't know a mini-schedule is a schedule for something on a main schedule, such as brushing teeth. The main schedule would say to brush teeth the mini-schedule would have each step of brushing (rinse brush, toothpaste on, brush top, side, bottom etc.).
I was a very independent child and did many things for myself. I was a latch-key child and got up for school on my own, got ready and walked to school (I'm really not trying to use the old "up hills both ways" speech, only demonstrating the difference). After school I made my own snack (homemade vanilla pudding, and I ate it hot off the stove, I don't know if you still call that pudding but it tasted great) and often went to the store and bought groceries for and cooked my own dinner. It's been hard for me to not expect the kids to be more independent as I had so much at such an early age. I have tried to give them more independence but I have been doing it the wrong way. I expected them to be able to handle some of the things other kids their age can do but didn't realize they need the steps broken down more than the average child.
I'm also worried about Shana. She has been becoming increasingly difficult and although I'm sure part of it is puberty changes I know most the other girls her age do not respond the way she does. Today we went into the hospital for a family visit and Shana became very agitated at Hunter and got very upset. Again it's nice that they show their "true colors" in these environments, but I'm really starting to feel lost again. On the way home Shana got upset when I was trying to talk to her about a Girl Scout opportunity that will be next summer. We have to fill out an application by tomorrow and I'm trying to determine whether she really wants to go or not. She became more and more upset with me when asking simple questions and I finally had to just ignore her completely. This of course agitated her more but I figure eventually she will calm down and talk to me about it. If not, then I guess I will not complete the application and we will not do the event.
I wish there were a few simple answers in this. Even the staff at the program Hunter is in are confused by his behaviors. This is because one day something that causes a meltdown the next day he handles fine but the next it's a problem again. It's very hard to predict at all what will trigger a meltdown in either child. This ever changing challenge is clearly more then I can handle. I am still leaning on God and praying for answers. I know this is all part of his plan and that he is providing me strength to get through each day, sometimes each moment. I'm so sad to leave my little baby boy in the hospital and not be able to hug and tuck him in for bed each night. God give me strength because I still can't do this alone.
Thursday, June 2, 2011
Treatment and Choices
Hunter began an intensive day treatment program at Children's Hospital yesterday. We were recommended to this program after we ended up in the ER a couple months ago. I am very excited about the opportunities this will open up and that he may finally get the help he has needed for so long.
The first day was probably more overwhelming for me than for him. I expected to drop him off at 10am and then thought I would have about an hour filling out papers. It ended up that I had just enough time to go grab some lunch and return back for more meetings. Hunter has an awesome support staff including; a psychiatrist, a speech therapist, occupational therapist, art therapist, music therapist, three doctors and some other staff. The staff is exceptionally friendly and very supportive not only for Hunter but for me as well. I have had 4 meetings and more to come. I love that not only are family able to visit and meet with the staff but they are required to do so. They also have groups for the parents in the morning each day after drop off and additional classes taught by the doctors.
We are talking about medication after he had a huge meltdown today which included him biting himself, striping all his clothes off, hitting, kicking and throwing furniture. I do think it is really necessary for him to be on meds at this point. It's such a hard decision to make as we have tried many meds in the past and have found that if there is an extremely rare side effect our kids will tend to have it. The first med is one that is mostly for anxiety and impulse control. It can cause low blood pressure but otherwise has minimal side effects. The other choice is a mood stabilizer and has many scary potential side effects. I am concerned that the first choice would not be enough as it is similar to another drug we have tried in the past and had little to no effect. I will be praying tonight that I make the right decision to help Hunter. I am happy that before the doctor starts any meds they are having a full blood screening done to get a base line. This way if there are any changes we will know. This gives me confidence in the doctors and that they are looking out for Hunter.
It has been such a long journey and I am frustrated with myself that I allowed things to fall apart for awhile. I quickly realized after yesterday that we have been trying too hard to get the kids to fit into the "normal" mode. I don't know why this happened but we became less focused on many of the techniques we had found to work when they were little. I never thought about a child as bright as Hunter still needing a picture schedule to help him regulate his day. The doctors told me today that this is very normal as the kids get older we seem to think they are able to handle things and start treating them more like a typical child. For awhile this works but then begins to backfire in a big way. We apparently hit that point.
I am very thankful that God has provided us the opportunity for me to stop working at this time. I should be finished up by the end of June. I am looking forward to refocusing our lives and really helping the kids to find tools to use to be able to function better in day to day life. God is truly giving me the strength I need and is helping me to find the hope I have been missing for so long.
The first day was probably more overwhelming for me than for him. I expected to drop him off at 10am and then thought I would have about an hour filling out papers. It ended up that I had just enough time to go grab some lunch and return back for more meetings. Hunter has an awesome support staff including; a psychiatrist, a speech therapist, occupational therapist, art therapist, music therapist, three doctors and some other staff. The staff is exceptionally friendly and very supportive not only for Hunter but for me as well. I have had 4 meetings and more to come. I love that not only are family able to visit and meet with the staff but they are required to do so. They also have groups for the parents in the morning each day after drop off and additional classes taught by the doctors.
We are talking about medication after he had a huge meltdown today which included him biting himself, striping all his clothes off, hitting, kicking and throwing furniture. I do think it is really necessary for him to be on meds at this point. It's such a hard decision to make as we have tried many meds in the past and have found that if there is an extremely rare side effect our kids will tend to have it. The first med is one that is mostly for anxiety and impulse control. It can cause low blood pressure but otherwise has minimal side effects. The other choice is a mood stabilizer and has many scary potential side effects. I am concerned that the first choice would not be enough as it is similar to another drug we have tried in the past and had little to no effect. I will be praying tonight that I make the right decision to help Hunter. I am happy that before the doctor starts any meds they are having a full blood screening done to get a base line. This way if there are any changes we will know. This gives me confidence in the doctors and that they are looking out for Hunter.
It has been such a long journey and I am frustrated with myself that I allowed things to fall apart for awhile. I quickly realized after yesterday that we have been trying too hard to get the kids to fit into the "normal" mode. I don't know why this happened but we became less focused on many of the techniques we had found to work when they were little. I never thought about a child as bright as Hunter still needing a picture schedule to help him regulate his day. The doctors told me today that this is very normal as the kids get older we seem to think they are able to handle things and start treating them more like a typical child. For awhile this works but then begins to backfire in a big way. We apparently hit that point.
I am very thankful that God has provided us the opportunity for me to stop working at this time. I should be finished up by the end of June. I am looking forward to refocusing our lives and really helping the kids to find tools to use to be able to function better in day to day life. God is truly giving me the strength I need and is helping me to find the hope I have been missing for so long.
Tuesday, May 31, 2011
New Beginnings... Full of Hope!
The last year has been a tough journey with our family. It has always been difficult to understand the challenges we have been given. We seem to run into problems everywhere we go. From behavior problems, to school bullies, to doctors spanking our children. I started to feel defeated and that there was no hope for us to get our kids to adulthood in one piece. In the last year I felt the loss of support of those closest to me and truly felt lost. I also felt a sense of loss of what a family is suppose to be more in the last year then I have ever felt before. I know it doesn't help to think of what a typical family experiences, because we will never be able to enjoy the same kind of experiences. Things that seem so simple, never are.
A few months ago we returned to church. This is truly the most rewarding thing we have done in a long time. It didn't change over night, it has taken time for me to change my focus and where I gather my strength. When we stopped going to church for awhile I was still reading my Bible and focused on God and gradually I got lazy and then frustrated with God's plan. It hurt that all I ever dreamed of was having a family, yet I never dreamed having a family would be this hard. I wanted more. I wanted the family that could enjoy school events without leaving in tears. I wanted to be able to have my kids participate in sports without having a meltdowns or them hurting another child. Or even just attend school like every other child, not in a special class, being suspended and eventually pulled from the public schools because they just plain don't have what is needed. Our marriage has also struggled, although we are thoroughly committed to and love each other and our kids. We thankfully have been able to avoid the fate that many families with children on the spectrum succumb to.
Returning to church brought me out of a slump that I had fallen into. I was depressed and angry with everything I was having to deal with. I truly felt lost and hopeless. I didn't not believe, I just allowed myself to not trust or have faith. Within weeks of returning to church Pat was offered a job that would put us in a position to be able to seek out some of the treatments we had not previously done due to the cost. The job is in another state and we will be moving the family, but we are waiting for a year to give us time to prepare (can't move kids like this overnight). It also is allowing me to quit working and focus solely on the kids and my family. It's hard being apart but I believe in my heart that this is where we are suppose to be right now. It is more important for one of us to be there 100% than only 50% each.
One area I struggled with while out of church was why we were given these struggles. I knew it's not my place to ask God why, but it happens sometimes. I knew God had a plan, but I felt weak and struggled just to wake up each day and get out of bed. I'd lost my drive to do anymore. When I returned to church, I quickly felt God's love, comfort and strength. I had renewed energy to push forward and become an advocate for my children again and find them the help they need. I am ready to fight and win and I have God on my side - I cannot lose!
There's a song by Matthew West called "Strong Enough", this song so clearly defines everything I have gone through in the last year. I don't want to post the whole song and I really could not pull parts out (check it out though). But it says exactly what I now know, and really knew this whole time but wasn't listening. I'm not strong enough on my own but God is strong when I am weak! I not only will get through this, but I believe again that God has blessed my children in so many ways and these challenges are nothing more then a part of that plan.
A few months ago we returned to church. This is truly the most rewarding thing we have done in a long time. It didn't change over night, it has taken time for me to change my focus and where I gather my strength. When we stopped going to church for awhile I was still reading my Bible and focused on God and gradually I got lazy and then frustrated with God's plan. It hurt that all I ever dreamed of was having a family, yet I never dreamed having a family would be this hard. I wanted more. I wanted the family that could enjoy school events without leaving in tears. I wanted to be able to have my kids participate in sports without having a meltdowns or them hurting another child. Or even just attend school like every other child, not in a special class, being suspended and eventually pulled from the public schools because they just plain don't have what is needed. Our marriage has also struggled, although we are thoroughly committed to and love each other and our kids. We thankfully have been able to avoid the fate that many families with children on the spectrum succumb to.
Returning to church brought me out of a slump that I had fallen into. I was depressed and angry with everything I was having to deal with. I truly felt lost and hopeless. I didn't not believe, I just allowed myself to not trust or have faith. Within weeks of returning to church Pat was offered a job that would put us in a position to be able to seek out some of the treatments we had not previously done due to the cost. The job is in another state and we will be moving the family, but we are waiting for a year to give us time to prepare (can't move kids like this overnight). It also is allowing me to quit working and focus solely on the kids and my family. It's hard being apart but I believe in my heart that this is where we are suppose to be right now. It is more important for one of us to be there 100% than only 50% each.
One area I struggled with while out of church was why we were given these struggles. I knew it's not my place to ask God why, but it happens sometimes. I knew God had a plan, but I felt weak and struggled just to wake up each day and get out of bed. I'd lost my drive to do anymore. When I returned to church, I quickly felt God's love, comfort and strength. I had renewed energy to push forward and become an advocate for my children again and find them the help they need. I am ready to fight and win and I have God on my side - I cannot lose!
There's a song by Matthew West called "Strong Enough", this song so clearly defines everything I have gone through in the last year. I don't want to post the whole song and I really could not pull parts out (check it out though). But it says exactly what I now know, and really knew this whole time but wasn't listening. I'm not strong enough on my own but God is strong when I am weak! I not only will get through this, but I believe again that God has blessed my children in so many ways and these challenges are nothing more then a part of that plan.
Thursday, April 7, 2011
How to Know When to Keep Going and When to Stop!
Today's post is probably going to be pretty negative. I try to always look for the highlights and not dwell on the negatives of having kids on the spectrum. But today I can't stop the negative from coming through.
Hunter has been doing martial arts since September. He started out loving it and did a really good job. The structure was great for him and he memorizes the forms really fast and does well. He has had some problems since the beginning, with lining up by rank and when he makes a mistake. But he handled it well. As he has progressed up levels though he has had more and more problems since you have to work with a partner at times. If the other person doesn't do exactly what Hunter wants them to do he has a major meltdown.
Two weeks ago today we ended up in the emergency room because Hunter had a huge meltdown at the beginning of martial arts. He proceeded to scream, kick, yell, and break things in the car while I waited for Shana to finish class. He also said that he was going to kill himself. This is why I had to take him to the ER. He has said this before, but this time he escalated it to saying how he would do it. We ended up being transferred to the psychiatric ward at Children's. They discharged us and recommended a day treatment program for Hunter, problem is it has a 2-3 week wait list and we are still waiting.
Hunter has continued to have meltdowns almost daily at martial arts. Now, I'm not talking about the little fits you see every child throw now and then. Tonight for example, I had to restrain him for 10-15 minutes while he tried to kick me, hit me, bite me, head butt me, dig his chin into my arm etc. I then had to carry him, still kicking and screaming out the door and to the car.
Hunter wants to do martial arts and he really enjoys it and does great when things run smoothly. But I don't know if it is worth continuing. Most of the problems he has in the class start with an inability to verbalize what the problem is. I've often been told that we have to think of it like someone trying not to sneeze. No matter how hard you try you cannot stop it. You may be able to stifle it sometimes, but not always. Hunter can't stop the reaction much the same way.
But when do you decide enough is enough and call it quits. It would be easy to say we are done if he simply didn't want to do it anymore, but he really wants to continue. It's his disability causing him the inability to participate like everyone else. It's also very embarrassing and this is hard for me to deal with. I have always been the one who likes to blend into the crowd, not be pointed out. This is impossible. I have to battle every time this happens with the emotions of me personally not wanting to go back because of the embarrassment to me. So far the other parents at the class have been extremely understanding and supportive and so have the staff, but it gets harder and harder to deal with everyday. I'm also in the classes and I really enjoy it too, but I'm missing many classes due to this and honestly don't know what to do.
Do I keep going through all the embarrassment and meltdowns and keep waiting to see if it ever clicks with him? Or, do I call it quits and hide at home where it is safe? I know this sounds like such an easy question, but it's really not. We have had to leave many things because of this and have never started many because I know it would be a problem. Is is fair to my kids that they can't participate in sports and activities because they have disabilities, no. But do people recognize it as a disability and not just bratty kids, not too often.
I'm not sure what we will do, but I hope eventually we will figure it out.
Hunter has been doing martial arts since September. He started out loving it and did a really good job. The structure was great for him and he memorizes the forms really fast and does well. He has had some problems since the beginning, with lining up by rank and when he makes a mistake. But he handled it well. As he has progressed up levels though he has had more and more problems since you have to work with a partner at times. If the other person doesn't do exactly what Hunter wants them to do he has a major meltdown.
Two weeks ago today we ended up in the emergency room because Hunter had a huge meltdown at the beginning of martial arts. He proceeded to scream, kick, yell, and break things in the car while I waited for Shana to finish class. He also said that he was going to kill himself. This is why I had to take him to the ER. He has said this before, but this time he escalated it to saying how he would do it. We ended up being transferred to the psychiatric ward at Children's. They discharged us and recommended a day treatment program for Hunter, problem is it has a 2-3 week wait list and we are still waiting.
Hunter has continued to have meltdowns almost daily at martial arts. Now, I'm not talking about the little fits you see every child throw now and then. Tonight for example, I had to restrain him for 10-15 minutes while he tried to kick me, hit me, bite me, head butt me, dig his chin into my arm etc. I then had to carry him, still kicking and screaming out the door and to the car.
Hunter wants to do martial arts and he really enjoys it and does great when things run smoothly. But I don't know if it is worth continuing. Most of the problems he has in the class start with an inability to verbalize what the problem is. I've often been told that we have to think of it like someone trying not to sneeze. No matter how hard you try you cannot stop it. You may be able to stifle it sometimes, but not always. Hunter can't stop the reaction much the same way.
But when do you decide enough is enough and call it quits. It would be easy to say we are done if he simply didn't want to do it anymore, but he really wants to continue. It's his disability causing him the inability to participate like everyone else. It's also very embarrassing and this is hard for me to deal with. I have always been the one who likes to blend into the crowd, not be pointed out. This is impossible. I have to battle every time this happens with the emotions of me personally not wanting to go back because of the embarrassment to me. So far the other parents at the class have been extremely understanding and supportive and so have the staff, but it gets harder and harder to deal with everyday. I'm also in the classes and I really enjoy it too, but I'm missing many classes due to this and honestly don't know what to do.
Do I keep going through all the embarrassment and meltdowns and keep waiting to see if it ever clicks with him? Or, do I call it quits and hide at home where it is safe? I know this sounds like such an easy question, but it's really not. We have had to leave many things because of this and have never started many because I know it would be a problem. Is is fair to my kids that they can't participate in sports and activities because they have disabilities, no. But do people recognize it as a disability and not just bratty kids, not too often.
I'm not sure what we will do, but I hope eventually we will figure it out.
Thursday, March 31, 2011
Family Game Night Looks Great on TV!
You've seen the commercials from the game companies telling you to start a family game night. It is very clear to me that these marketing professionals don't have kids on the spectrum. I loved playing games with my brother and parents when I was a kid. I thought that once our kids were a little older we would be able to have fun game nights playing SkipBo, UNO, Life, Monopoly and many other games. Little did I know that spectrum kids and game night do not mix.
Don't get me wrong we will continue to have game nights and play games together. But these nights are never filled with the happy smiling kids and parents they show in the commercials. No, ours often end in the cards or game board being thrown across the kitchen. One or both of the kids will be crying and yes, even sometimes so will I. Games cause a huge amount of anxiety and frustration and no matter how many times you say "it's okay it's just a game" or "we play for fun, not to win" it never seems to help.
I've tried everything to get Hunter to understand that games are a lot of luck and a little skill. This doesn't sit well for the kid who expects things to work the same way all the time. Hunter loves the Rubik's cube, I really didn't understand this till now. How can a kid who gets so frustrated so easily handle something like the Rubik's cube? It can drive the most sane person crazy. Well, when you think about it the cube can be solved easily in a logical way every single time. It never changes. No matter how much you mix it up you follow a few simple algorithms and it is back to the way it started.
Games of luck, chance or even strategy don't work that way. You can't make the cards end up the way you want them too. You also cannot anticipate what an opponent will do. You can't control how the dice will roll. There is no way to make a game logical.
I have tried showing how games are very random with games like War. Hunter liked this game at first, but then the randomness of the game took over and he couldn't handle that he lost his cards simply by luck of the draw. I even showed him how to play Blackjack and showing him how the dealer wins most of the time and how the play of the other people makes his hand change. No luck. I guess one good thing is he will probably not become a gambling addict in Vegas.
It's hard sometimes to hear from friends all the fun they have playing games with their kids. I hope and pray that someday that will be us. That we will have a fun night of games and not end with us searching the kitchen for the cards or game pieces. I don't think we will get to that place by not playing, but until it happens we will have as much fun as we can and at least we continue to try.
Don't get me wrong we will continue to have game nights and play games together. But these nights are never filled with the happy smiling kids and parents they show in the commercials. No, ours often end in the cards or game board being thrown across the kitchen. One or both of the kids will be crying and yes, even sometimes so will I. Games cause a huge amount of anxiety and frustration and no matter how many times you say "it's okay it's just a game" or "we play for fun, not to win" it never seems to help.
I've tried everything to get Hunter to understand that games are a lot of luck and a little skill. This doesn't sit well for the kid who expects things to work the same way all the time. Hunter loves the Rubik's cube, I really didn't understand this till now. How can a kid who gets so frustrated so easily handle something like the Rubik's cube? It can drive the most sane person crazy. Well, when you think about it the cube can be solved easily in a logical way every single time. It never changes. No matter how much you mix it up you follow a few simple algorithms and it is back to the way it started.
Games of luck, chance or even strategy don't work that way. You can't make the cards end up the way you want them too. You also cannot anticipate what an opponent will do. You can't control how the dice will roll. There is no way to make a game logical.
I have tried showing how games are very random with games like War. Hunter liked this game at first, but then the randomness of the game took over and he couldn't handle that he lost his cards simply by luck of the draw. I even showed him how to play Blackjack and showing him how the dealer wins most of the time and how the play of the other people makes his hand change. No luck. I guess one good thing is he will probably not become a gambling addict in Vegas.
It's hard sometimes to hear from friends all the fun they have playing games with their kids. I hope and pray that someday that will be us. That we will have a fun night of games and not end with us searching the kitchen for the cards or game pieces. I don't think we will get to that place by not playing, but until it happens we will have as much fun as we can and at least we continue to try.
Tuesday, September 21, 2010
One Moment at a Time
I have a hard time writing my blog when things are going well. I tend to write on the worst days, kind of like a form of therapy. But it makes it seem like there are no good days. To be quite honest we don't necessarily have "good" days. With our kids we tend to have absolutely fantastic days or absolutely awful days. There really is not a lot of in between. We live in a world of peaks and valleys.
The last few days have been peaks.
Shana has done very well at school the last couple days and she is excited about trying out for a solo part in the 5th grade play. I know without a doubt she has the voice to sing the part, but there is the little part of me that is nervous about her getting a "lead" role. It's not that I worry for her, I worry about whether on the day of the show she will be having a peak or valley day. If it's a peak day the production will go great and she will be excited and perform in the way I know she can. If it's a valley day, it could be very awful for her. Will I stop her from trying out? Absolutely not! If it's a valley day, we will pick up the pieces when it's all over and work hard to help her recover. If it's a peak day we will celebrate her success and enjoy the moment!
It's rare that both kids are having peak days at the same time. This week has been really nice. Hunter also has had a very good week and has caught up on the lessons he was behind in. We may even be done with all his work for the week by Thursday and can take Friday off! This is what works for him in virtual school. He doesn't have to slow down on the days he's excited and ready and wait for the rest of the class and he can take a day off when the work is done early. The fun thing is we may go to the museum or somewhere he likes to go and we can still count it as a "school" day. Can't beat that!
Today I'm not thinking of the things I'm tired of. Today is a peak day and I will cherish the time and enjoy some fun days with the kids. It's hard sometimes to enjoy the time, knowing that at any moment we can hit the next valley. But we have to. If we don't enjoy each moment of joy, I don't know how we would make it through.
The last few days have been peaks.
Shana has done very well at school the last couple days and she is excited about trying out for a solo part in the 5th grade play. I know without a doubt she has the voice to sing the part, but there is the little part of me that is nervous about her getting a "lead" role. It's not that I worry for her, I worry about whether on the day of the show she will be having a peak or valley day. If it's a peak day the production will go great and she will be excited and perform in the way I know she can. If it's a valley day, it could be very awful for her. Will I stop her from trying out? Absolutely not! If it's a valley day, we will pick up the pieces when it's all over and work hard to help her recover. If it's a peak day we will celebrate her success and enjoy the moment!
It's rare that both kids are having peak days at the same time. This week has been really nice. Hunter also has had a very good week and has caught up on the lessons he was behind in. We may even be done with all his work for the week by Thursday and can take Friday off! This is what works for him in virtual school. He doesn't have to slow down on the days he's excited and ready and wait for the rest of the class and he can take a day off when the work is done early. The fun thing is we may go to the museum or somewhere he likes to go and we can still count it as a "school" day. Can't beat that!
Today I'm not thinking of the things I'm tired of. Today is a peak day and I will cherish the time and enjoy some fun days with the kids. It's hard sometimes to enjoy the time, knowing that at any moment we can hit the next valley. But we have to. If we don't enjoy each moment of joy, I don't know how we would make it through.
Thursday, September 16, 2010
So Tired...
Today, I am so tired!
So tired of calls or emails from the school letting me know that my child has refused to do their work - again.
So tired of being hit, kicked, bit, scratched and having things thrown at me.
So tired of trying to remain calm and detached when all I want to do is engage.
So tired of trying to figure out what I have done wrong and am I being punished for it.
So tired of trying to figure out where I have gone wrong and why I can't fix it.
So tired of people telling me "God will never give you more than you can handle"
So tired of working so hard and seeming to make no progress.
So tired of wondering will my kids survive through their teen years.
So tired of trying to be the best mom I can be and still feeling like I'm failing miserably.
So tired of not being able to sleep because there is too much to do.
So tired of having migraines, back pain, foot pain and not having time to do anything about it.
So tired of feeling isolated from the world because most people don't understand or don't want to try.
So tired of trying new diets, meds, cleansers and anything else that "may" help.
So tired of wondering if we have made the right decisions, because nothing ever seems "right".
This list could go on for miles. I try not to think about these things most of the time. The problem is they are always there, they are exhausting and they are unrelenting in our lives. We can only keep trying and praying that we can pull through each day and maybe make a little progress. Most days the light at the end of the tunnel doesn't look too far away. Days like today there doesn't seem to be a light at all!
Anyone who thinks life with twice exceptional kids is not that bad, has never lived with a twice exceptional kid. The part that is so hard is most of the people who see our family only see the good side. They don't see behind the walls or even the day-to-day life that becomes so difficult at times. It's not everyday that we have a problem, but sometimes they seem to come in a rapid-fire fashion like a machine gun and you can't duck, hide or escape them. If it wasn't for the support of a few really good people who really "get" what we are going through I think we would fall apart completely.
Our lives feel an awful lot like the weather - calm, sunny and serene one moment and then a blizzard, hail storm or tornado the next. The best we can do is take cover and try to hold on for it to pass. Then we pick up the pieces and do it all over again the next day.
So tired of calls or emails from the school letting me know that my child has refused to do their work - again.
So tired of being hit, kicked, bit, scratched and having things thrown at me.
So tired of trying to remain calm and detached when all I want to do is engage.
So tired of trying to figure out what I have done wrong and am I being punished for it.
So tired of trying to figure out where I have gone wrong and why I can't fix it.
So tired of people telling me "God will never give you more than you can handle"
So tired of working so hard and seeming to make no progress.
So tired of wondering will my kids survive through their teen years.
So tired of trying to be the best mom I can be and still feeling like I'm failing miserably.
So tired of not being able to sleep because there is too much to do.
So tired of having migraines, back pain, foot pain and not having time to do anything about it.
So tired of feeling isolated from the world because most people don't understand or don't want to try.
So tired of trying new diets, meds, cleansers and anything else that "may" help.
So tired of wondering if we have made the right decisions, because nothing ever seems "right".
This list could go on for miles. I try not to think about these things most of the time. The problem is they are always there, they are exhausting and they are unrelenting in our lives. We can only keep trying and praying that we can pull through each day and maybe make a little progress. Most days the light at the end of the tunnel doesn't look too far away. Days like today there doesn't seem to be a light at all!
Anyone who thinks life with twice exceptional kids is not that bad, has never lived with a twice exceptional kid. The part that is so hard is most of the people who see our family only see the good side. They don't see behind the walls or even the day-to-day life that becomes so difficult at times. It's not everyday that we have a problem, but sometimes they seem to come in a rapid-fire fashion like a machine gun and you can't duck, hide or escape them. If it wasn't for the support of a few really good people who really "get" what we are going through I think we would fall apart completely.
Our lives feel an awful lot like the weather - calm, sunny and serene one moment and then a blizzard, hail storm or tornado the next. The best we can do is take cover and try to hold on for it to pass. Then we pick up the pieces and do it all over again the next day.
Tuesday, August 17, 2010
Solutions Not Excuses!
This has been a very tough week for me. I have been struggling with some emotions that I can't really explain or go into right now. It has made me think even more about having twice exceptional kids and things I need to help them learn so they can function in society without being a victim. I want them to be in control of their lives and not grow up thinking the world owes them something because God has blessed them with these unique gifts and challenges.
Everyday we struggle with our children in helping them to learn how to live in a world that they do not always understand. Most people looking at our children would never know they have any challenges. Yet, everyday we have to deal with situations that can potentially cause them major struggles. What seems very minor on the outside and most neurotypical people in society would not even notice, can be a major challenge for my kids.
Some examples:
- Loud music in a restaurant or at the movies
-- may cause sensory processing overload and lead to a meltdown
- A waitress asking them what they would like to eat or drink
--can cause anxiety if they are not ready and may lead to a minor or major meltdown
- A restaurant with lots of games and flashing lights
--may cause a meltdown due to over stimulation
- Another child in a restaurant, park, school or any other place that is being allowed to behave inappropriately
--can cause ours to model the behavior and they may not understand why it is okay for the other child
- Painting a room in a public place a very bright color
--may cause visual over stimulation
- A child at a park, school or other public place picking up a toy or book that belongs to one of my kids
--may cause them to become agitated and they may not read non-verbal cues from that child
These are just a few of the things we have struggled with and the list goes on and on. These things are very common in the general public and the kids will have to learn to deal with situations such as these every day. What has really caused me frustration this week is it has become clear to me that there are people who make the problem someone else's instead of finding a solution for themselves. I have told my children many times that I will not let them use their challenges as an excuse for bad behavior or as a crutch.
I want them both to learn that the world cannot always bend to them and that they need to make decisions and find solutions to better function day to day. They can't always ask the restaurant or theater to turn down the music, or have a meltdown when a waitress asks for their order. They don't have control over the flashing lights and games in a restaurant or what color the walls will be painted.
Since we became aware of their challenges we have always tried to find ways to help them whenever possible. We didn't do this by trying to change society, we did it by helping them to find their own solutions. We carry headphones to wear in loud environments or we teach the children to ask the waitress for another moment to make a decision. We have taught them to bring a book with them so if they are tempted to mimic other children in public they can choose to read their book instead. There are times that the environment does not allow a good solution, like the bright walls or flashing lights or games - so we choose not to visit those places.
I hope that as my children continue to grow and develop that they will begin to find ways to help themselves better fit into society and be able to be comfortable in all environments. If not, I hope they find ways to help themselves be able to participate better and ask for assistance when needed. I hope they never use their challenges as an excuse but always look at them as the gifts they are. In having these challenges they have been blessed in so many ways and using those gifts I pray they will find a way to become the solution for themselves!
Everyday we struggle with our children in helping them to learn how to live in a world that they do not always understand. Most people looking at our children would never know they have any challenges. Yet, everyday we have to deal with situations that can potentially cause them major struggles. What seems very minor on the outside and most neurotypical people in society would not even notice, can be a major challenge for my kids.
Some examples:
- Loud music in a restaurant or at the movies
-- may cause sensory processing overload and lead to a meltdown
- A waitress asking them what they would like to eat or drink
--can cause anxiety if they are not ready and may lead to a minor or major meltdown
- A restaurant with lots of games and flashing lights
--may cause a meltdown due to over stimulation
- Another child in a restaurant, park, school or any other place that is being allowed to behave inappropriately
--can cause ours to model the behavior and they may not understand why it is okay for the other child
- Painting a room in a public place a very bright color
--may cause visual over stimulation
- A child at a park, school or other public place picking up a toy or book that belongs to one of my kids
--may cause them to become agitated and they may not read non-verbal cues from that child
These are just a few of the things we have struggled with and the list goes on and on. These things are very common in the general public and the kids will have to learn to deal with situations such as these every day. What has really caused me frustration this week is it has become clear to me that there are people who make the problem someone else's instead of finding a solution for themselves. I have told my children many times that I will not let them use their challenges as an excuse for bad behavior or as a crutch.
I want them both to learn that the world cannot always bend to them and that they need to make decisions and find solutions to better function day to day. They can't always ask the restaurant or theater to turn down the music, or have a meltdown when a waitress asks for their order. They don't have control over the flashing lights and games in a restaurant or what color the walls will be painted.
Since we became aware of their challenges we have always tried to find ways to help them whenever possible. We didn't do this by trying to change society, we did it by helping them to find their own solutions. We carry headphones to wear in loud environments or we teach the children to ask the waitress for another moment to make a decision. We have taught them to bring a book with them so if they are tempted to mimic other children in public they can choose to read their book instead. There are times that the environment does not allow a good solution, like the bright walls or flashing lights or games - so we choose not to visit those places.
I hope that as my children continue to grow and develop that they will begin to find ways to help themselves better fit into society and be able to be comfortable in all environments. If not, I hope they find ways to help themselves be able to participate better and ask for assistance when needed. I hope they never use their challenges as an excuse but always look at them as the gifts they are. In having these challenges they have been blessed in so many ways and using those gifts I pray they will find a way to become the solution for themselves!
Saturday, August 14, 2010
Nervous Anticipation!
Many events being a parent of twice exceptional kids can lead to nervous anticipation. We never know what each day will bring. What is typically an exciting or fun day for most parents can be full of stress and agony for a parent of children with disabilities.
School is starting soon. For most parents this is a time of excitement and joy. We do have joy and excitement at the beginning of the school year, but we are also full of anxiety and nervous anticipation for what the new school year will bring. We have yet to have a relaxing simple school year. When we drop our kids off in the morning we are nervous picking them up in the afternoon, worried about what may or may not have happened at school.
Every school year we have been dealt some difficult situations, that I hope no other parent ever has to go through. We have had a teacher who refused to allow my daughter to use a certain type of crayon to help her not break the crayons. We had a little boy bully our son in preschool and the teachers would discipline Hunter for yelling when he got hit. My daughter was suspended for turning over a desk after being accused of "stealing" a piece of scotch tape. My son has been suspended so many times I can't even describe each instance (and he's only starting 2nd grade this year). My daughter was suspended after hitting another girl with a willow leaf, after being surrounded by 8-9 other girls teasing her. We've had principals that clearly did not want our children in their school. We have had district staff fight us over a diagnoses to the point we had to contact an attorney. We dread a phone call coming from the school.
In all that we have had a few very positive experiences. We had a wonderful Kindergarten teacher that saw that Hunter was a sweet boy even on his bad days. A teachers assistant that I think really loved Hunter and was truly sad when he left the school. A young teacher that found ways to help Shana keep her desk organized which helped her stay on track during the day. A principal that could take a potentially embarrassing situation and make it alright. A teacher that really saw the gifts in Hunter and helped him to finally feel happy at school again.
I have no idea what this year will bring. We have some big changes and it is very scary. Shana is a 5th grader and is excited to be a big kid in the school but at the same time is still often a lot like a little girl. We hope her year will be peaceful and fun. Hunter starts virtual school, something new and exciting, yet a little scary for us both at the same time.
As I pick up the final school supplies and clothes I think about how this year may be. Will this be the year that we finally enjoy the year. Is that even possible? This year feels different than the last few. Each of the other years we have started with IEP meetings and discussions over behavior plans. This is the first year that we are enjoying the back to school time and hoping for a year of fun, excitement, growth and joy!
School is starting soon. For most parents this is a time of excitement and joy. We do have joy and excitement at the beginning of the school year, but we are also full of anxiety and nervous anticipation for what the new school year will bring. We have yet to have a relaxing simple school year. When we drop our kids off in the morning we are nervous picking them up in the afternoon, worried about what may or may not have happened at school.
Every school year we have been dealt some difficult situations, that I hope no other parent ever has to go through. We have had a teacher who refused to allow my daughter to use a certain type of crayon to help her not break the crayons. We had a little boy bully our son in preschool and the teachers would discipline Hunter for yelling when he got hit. My daughter was suspended for turning over a desk after being accused of "stealing" a piece of scotch tape. My son has been suspended so many times I can't even describe each instance (and he's only starting 2nd grade this year). My daughter was suspended after hitting another girl with a willow leaf, after being surrounded by 8-9 other girls teasing her. We've had principals that clearly did not want our children in their school. We have had district staff fight us over a diagnoses to the point we had to contact an attorney. We dread a phone call coming from the school.
In all that we have had a few very positive experiences. We had a wonderful Kindergarten teacher that saw that Hunter was a sweet boy even on his bad days. A teachers assistant that I think really loved Hunter and was truly sad when he left the school. A young teacher that found ways to help Shana keep her desk organized which helped her stay on track during the day. A principal that could take a potentially embarrassing situation and make it alright. A teacher that really saw the gifts in Hunter and helped him to finally feel happy at school again.
I have no idea what this year will bring. We have some big changes and it is very scary. Shana is a 5th grader and is excited to be a big kid in the school but at the same time is still often a lot like a little girl. We hope her year will be peaceful and fun. Hunter starts virtual school, something new and exciting, yet a little scary for us both at the same time.
As I pick up the final school supplies and clothes I think about how this year may be. Will this be the year that we finally enjoy the year. Is that even possible? This year feels different than the last few. Each of the other years we have started with IEP meetings and discussions over behavior plans. This is the first year that we are enjoying the back to school time and hoping for a year of fun, excitement, growth and joy!
Tuesday, July 20, 2010
Constantly Changing!
All parents have experienced the ups and some downs of raising kids. We have all had days where everything seems to be falling apart and days where everything goes just fine. Most parents the down days are few and most days are filled with enjoyable times with their kids.
We do have a ton of fun with our kids. We love watching them explore and learn new things. We love to go do fun things: museums, parks, zoos etc. It's hard though because we never know on any given day whether we are going to have a up or down day. It's rare that both kids have up days on the same day. I know it sounds cynical to say that and I'm justing setting myself up for disaster but I've been dealing with this for 10 years and truly we cannot let down our guard and think things are just fine, because at any moment that can change.
There's a joke in Colorado, if you don't like the weather just wait five minutes and it will change. Having twice exceptional kids is much like this. Although sometimes the weather is nice and it changes for the worse. We can be outside playing with the kids and having an enjoyable time and then for little or no reason one of them will have a major meltdown over grass getting on their socks.
It's impossible to predict what will trigger a meltdown. What caused one today may have no affect on the child tomorrow. We have to be prepared to handle anywhere and anytime.
The last couple weeks have been much better then the night of our anniversary. The kids have fought and argued but more like typical children, nothing major. It's hard to just enjoy the moment and not think about when the next weather change but we always have to think about when the next meltdown will occur. For now, I will do my best to enjoy the calm and hope the storm stays away for a little while. We will be ready when it comes.
We do have a ton of fun with our kids. We love watching them explore and learn new things. We love to go do fun things: museums, parks, zoos etc. It's hard though because we never know on any given day whether we are going to have a up or down day. It's rare that both kids have up days on the same day. I know it sounds cynical to say that and I'm justing setting myself up for disaster but I've been dealing with this for 10 years and truly we cannot let down our guard and think things are just fine, because at any moment that can change.
There's a joke in Colorado, if you don't like the weather just wait five minutes and it will change. Having twice exceptional kids is much like this. Although sometimes the weather is nice and it changes for the worse. We can be outside playing with the kids and having an enjoyable time and then for little or no reason one of them will have a major meltdown over grass getting on their socks.
It's impossible to predict what will trigger a meltdown. What caused one today may have no affect on the child tomorrow. We have to be prepared to handle anywhere and anytime.
The last couple weeks have been much better then the night of our anniversary. The kids have fought and argued but more like typical children, nothing major. It's hard to just enjoy the moment and not think about when the next weather change but we always have to think about when the next meltdown will occur. For now, I will do my best to enjoy the calm and hope the storm stays away for a little while. We will be ready when it comes.
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