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.

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.

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!

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.

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.

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.

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.

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.

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.

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.