Butters was diagnosed with Asperger's Syndrome when he was 3.5 then hydrocephalus at 5. Here I talk about the high's, low's, challenges and and all the fun things that happen in between.
At the end of the month Alvin turns 5 years old. It’s going to be a pretty big deal to us but I’m not sure if it will be to him.
We have family making the trip from AL to NW Washington to spend a few days with us see the kids and see what he has accomplished in the gym.
Wednesday night when I was talking to one of the parents they asked if Alvin was excited about his upcoming birthday party and that’s when reality came crashing down on me again.
I’ve talked to him about it and will let him go and pick out the decorations (plates, napkins, ect) with what ever theme he wants but I have to wonder does he get it? If you ask him what he wants for his birthday he doesn’t answer and just continues with what ever he was doing at the time.
With all the progress he is making sometimes I just wish he could/would tell me things. I would love appropriate answers to questions.
He did however tell me he wanted chocolate cake last night. Baby steps but I can take that!
In so many ways he and Elliot are at the same level socially. I can ask Elliot the same questions and she just looks at me and smiles or laughs. Even when they play they do things very similar. Their play time normally involves playing tag and laughing at each other or playing peek-a-boo under a blanket where the laughing never stops. There isn’t much speaking other than the occasional “NO”!
So even though Alvin turns 5 years old, I am reminded every day that he still has a long way to go to catch up. He is around 2.5 socially and 5 years old physically. I know this is completely normal and should get better as he gets older, but sometimes in the moment it's hard to take.
This week as I alluded too went pretty bad at the gym. It was show week and during the class all of the other kids got to show a skill except for Alvin. At the last station demonstration when he realized that he didn't get a turn he came to me and said "we go home now". He calmly walked out of the door went and got his shoes, socks and jacket and asked for help to get ready to leave.
I was heartbroken for him. He realized that all the other kids got to show a skill and for whatever reason he didn't. In the process of leaving I told the teacher that was out in the lobby something along the lines of you guys don't get it. He knows when he is treated differently and it does affect him.
I was fuming mad and upset for a good 2 days. Whether or not it was intentional was beside the point. I was mad because of how hard he has worked and how much he had improved and didn't get to have his turn to shine. The days following Alvin was pretty low key about the gym. If I brought it up he would tell me he wasn't going back. I blame him, not really. I decided Thursday morning that until I could address the issue he would not be going to his extra practice the next day and his next class would be questionable at best.
Friday night when my daughter had her class I got my chance to clear things up. When I got there I asked to speak to the program director after class about what happened. Instead of after class we spoke right then and there in the office. When I told her what happened she was shocked and immediately went and pulled the teacher from his class. As soon as we spoke about it I could tell he felt horrible. This is a teacher that Alvin adores. When I told him that the trust that was built was now gone the look on his face said it all. Alvin has put full trust in very few people outside of family. It takes a while for him to build trust, but once its there he will do almost anything for you.
I fully believe that what happened to Alvin in the gym was not intentional. He adores his teacher and his teacher knows how important trust is to him.
One very important thing though about this situation. There is reason to be proud of Alvin as well as an opportunity for him to learn something.
The first thing is what he was able to tell me when he was upset. He didn't have a tantrum, there was no kicking and screaming, just a calmness. He used words and his understanding of emotions to tell me he wasn't happy. These are things he has been working on for months at home, school and with his music therapist. It was simply amazing to see.
The opportunity to learn is about adults making mistakes. Granted he sees this in school because according to his teacher anytime something is wrong Alvin politely corrects them. These are the times where we talk about how everyone makes mistakes even adults. As he gets older this is going to be a recurring lesson, but one for him to remember.This week we will be talking about that on and off and addressing it directly with his teacher on Wednesday night.
In the end I am glad we were able to work everything out. What Alvin is doing as shown below in the videos shows how far he has come. The skill on the high beam he saw demonstrated only once and needed no verbal cues from the teacher to do correctly which completely floors me!
Alvin has loved watching The Big Bang Theory for quite a while now. He especially loves the character Sheldon (who many believe to have Asperger's Syndrome but it is never stated that he does). Alvin loves when he says "Bazinga!" and dances to the opening and closing music every time.
This week I found out that Alvin and the character Sheldon are similar in another way. They both love thier whiteboards and are not happy when you mess with them. Here Sheldon shows Penny his neighbor what is on his whiteboard. Notice how proud he is of what he has on it.
Well this week since we were stuck inside due to the snow I decided to set up the easel the kids got for Christmas that has a magnetic whiteboard on one side and chalk baord on the other. It also came with some magnetic numbers and letters which of course made Alvin VERY happy.
As soon as I got out the numbers Alvin would not let Elliot anywhere near them. He then told me "5 +4 equals 9". This was shocking but we got a kick out of it and the rest of the night he happily worked on adding different numbers together. He didn't always get them right but seemed to have fun learning them.
Then his sister decided she wanted to play too and that wasn't the best idea! He kept saying don't mess with my board!! While we are working on teaching them both to share we couldn't help but laugh. He was so upset at her messing with his number patterns and math that it was just funny.
During all this all I could think of is the character Sheldon. Alvin certainly has his days as a 4 year old boy and his love of math and numbers that I just can't help but think of Sheldon. When he was 2 we used to joke that his love of numbers had him destined to go into engineering or science. He may or may not but right now we are having fun with his slightly odd obsession to numbers and math just like the character he loves.
Disclaimer: This is more of a quick vent than a normal post. This past week I’ve been mad and just distressed at what is going on with him and I hope that the ones of you who have kids with a seizure disorder along with autism can understand.
This week has been challenging to say the least. This week we have seen an increase in Alvin’s seizure activity and it has been hard on all of us.
It started Sunday night when he was trying to go to bed. He was upset more than usual and we couldn’t figure out why. I went into his room to lay down with him and I noticed what was going on. He was having a seizure episode. His face was twitching and there was a lot of involuntary movement in his eyes and overall face. It was heartbreaking to watch and for the first time that I think he was aware that something was going on. After laying with him for a little bit things died down and he was finally was able to rest.
The next day during music therapy he has a drop and then again on Wednesday during dinner it happened yet again and caused him to spill some of his dinner all over him and stress him out.
For a while he had so few of these episodes that we honestly could forget that he even had this issue. The seizures are one of the things that drive me nuts and stress me out.
When the seizure disorder was diagnosed we had a choice to make we could put him on medication and deal with the side effects or wait it out until he grows out of them. The type of seizure he has is very hard to treat and most kids out grow them by the time they turn 7 or 8. So because the seizures are so erratic we chose to do nothing with medication at this time which was also the recommendation of his pediatrician in Alabama and his one here in Washington.
This week I just got mad at it all. I hate that he has started to realize things are going on and it scares him. He is starting to notice the drops more and has started to come to us for help. I was hoping he would remain immune to what was going on for a little while longer.
So while this week has still given us steps in the right direction with music and gymnastics and the steady improvements I think sometimes I think we need to let ourselves be upset at some of the things we have to deal with which is why I ended up writing this post.
A couple of weekends ago I was working 1st shift on an airplane in the factory and I got to talking to one of the shop guys about the upcoming holiday, kids and such. When I mentioned that my choices this year were based on how best to help Alvin and mentioned that he had a form of autism he got very quiet and said, “I’m so sorry. That has to be so hard on you and your family.”
While his reaction is normal and I understand that part, I think my response caught him off guard.
I immediately said “I’m not. Alvin is very unique and autism or not he is still a 4 year old boy and at times just has more quirks than other kids his age. Even if we didn’t have the diagnosis I would (and do) treat him like a normal 4 year old.
I guess after a year of dealing with this I’m starting to learn to not let autism/asperger’s syndrome define my son. The diagnosis was a huge help to understanding him, but it doesn’t define him or his future. W and I have a running joke that our goal like any other parent is to raise him to the point that he can be self sufficient and leave our house!
Lately I’ve made it a point to reshape my view on autism.
Autism is not an excuse but a reason behind why Alvin acts the way he does.
I’m not willing to just accept things as they are and shelter him from the world. I’m not willing to take the easy road. Lately we have been pushing him very slowly but surely. Every week there is a new challenge; be it at the gym, music therapy or just normal social interactions. We have begun to push his limits and its working. Verbal skills have increased and he is becoming quite the little professor. He has great manners and says hi and bye to everyone we meet. It sounds awkward as anything, but that doesn’t matter. The point is he is talking and interacting in his own way. He has now done 2 camps at The Little Gym and while the separation was hard at the first one it got better with the second, the rest of both of the 3 hour camps were deemed a success.
I guess what I am getting at here is that most days the fact that he has this mess fails to make any difference in what we do. I don’t feel sorry for us and don’t expect anyone else to. Sure I would love more understanding but who wouldn’t. I guess through all the craziness it can be I’ve adopted W (my husband’s) outlook on it. Autism can be pretty awesome if you just take the time to get to know the person!
A couple of weeks ago I attended the Seattle Autism/Asperger’s conference and it was amazing. First off I got to hear Temple Grandin speak which was absolutely amazing. I also got to meet her in person and get a copy of her book, “Thinking in Pictures” signed.
Another person that I got to hear speak was Jennifer McIlwee Meyers. She was so engaging as a speaker and I took away one big thing that I am about to start implementing with Alvin. That is setting him up for success. She used a few example of how her parents used baby steps to prepare her for things and by the time she needed to use them all together it was a manageable task. Once she succeeded at one thing that gave her confidence to go and begin to tackle other things one by one.
Alvin’s overall new goal is working on gaining independence. Now that we have finally begun to really unlock his verbal abilities its time to focus on needing less re-direction and working more independently. This applies to what he does in gymnastics, music therapy, the preschool classroom and especially at home. We are working on this in baby steps very hard in the gym and music therapy. Making independent choices, verbalizing what he wants and doing a skill/task when asked to or saying no thank you if he doesn’t want to. This has gone pretty well and each week we push a little more.
We have also been using this schedule to help him when we go out to do multiple errands and we have had pretty good success with him. He loves knowing what is coming up next and loves reading and moving the stickers off when we are done with something.
Alvin's schedule. This is an example of what we do on his music therapy days.
I say all of this because next week Alvin is going to do a camp at The Little Gym. Does this make me nervous? YES! But is it time that we give him a chance to work on independence, yes.
What I am going to do is attempt is help him by making up a basic schedule that shows the order of activities that will be done during camp. This isn’t going to be detailed but just a high level. I’ve talked to a program director at the gym and she has agreed to help me out with this.
The whole goal here is for the camp experience to be very positive for him and the staff working with him. I want to do what I can so his first camp experience is a success. Its 3 hours around normal kids. Some of the kids he will know and some he won’t. He will know the instructors thankfully and that should make things easier.
I'll do another update after the camp is finished but right now all we can do is try and hope for the best.
This week’s odd moment most any parent can relate to. For parents of kids with Asperger’s Syndrome this scene might really hit home and hopefully make you laugh far too much.
Let me preface this by first off saying Alvin has an obsession with toy cars. He loves to line them up by number. This can be ascending or descending order. The numbers can be arranged by even or odd as well. It can be by make or model, color, you name it. They can be racing or head to head crashing all in a line. He’s been doing this since he was about 2.5 and to this day cars with numbers on them are a big thing.
On Wednesday nights before gymnastics I generally take Alvin out to walk around stores, get dinner and otherwise spend one on one time with him. This week because I have rocks for brains I took him to Toys R Us looking for a specific Melissa and Doug toy band set. Well the general rule in a place that carries Hot Wheels cars is if he behaves himself he can get one. Well he had been pretty good. No major melt downs and didn’t run off so we went over to the large Hot Wheels cars display and he was allowed to pick one out. He grabs this one and I just cringe!
The next thing he does it say loudly “69!” I try and give him another number car but it doesn’t work. His mind is made up on that car. All I can do is shake my head and continue on. We pay for the car with no major incident and once back in my car he is very happy to have the number 69. We head over to Jack in the Box for dinner since he loves their rice bowls and so do I. Once entering he starts yelling 69 over and over. He doesn’t want to be in there so all he can do is yell a number. I get our food we sit down and all I can do is laugh. Then I text my husband and some friends and the laughter continues.
Now granted I know that what happened here is common. A kid has a very strong interest in something and doesn’t want to let it go. The main difference is most 4 year olds have better verbal skills that Alvin.
On the plus side though for once I was able to laugh at the situation instead of being embarrassed and think only Alvin would be proclaiming his love for the number 69 in the middle of a store!!
