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.
Wednesday, September 21, 2011
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.
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