IEP progress report and Show Week

This past week was Butter's last week of school and show week at the gym. Plus we also had Austism Speaks night with the Seattle Mariner's so to say the least it was a busy week.

I've been nervous for a few weeks about the IEP progress report. I guess I saw so many improvements that I was just hoping that he was doing the same things at school.When I first read the progress report I was suprised he wasn't doing better. Most all of the remarks he got were an emerging skill except for language which was more of a mastery. After I read and re-read the comments I was happy with it. He is making progress which is the key. If he had made no progress in the areas it would have been down right depressing. Once I had time to sit down and think about it his teachers were exactly right. So overall a very promising report and plenty to work on this summer.

Tuesday night we had the Autism Speaks night at Safeco Field with the Mariner's. To say we all had a good time is an understatement! Butters was in love! The staff was so nice and many times came up to give the kids baseball cards out of no where. The especially loved the play area. Staffed at the entrance  and inside there were plenty of extra eyes just incase he decided to bolt. Also they had a strict policy of no alcohol inside the area at all which I loved! Butters was in love with the area though and we came back a few times before the game started so he could get some energy out.

Yum, Garlic fries!

Loving the play area inside Safeco Field

Chilling out in our seats before the game

Fist bump with the Moose! I was so shocked that he even wanted to get close to him!!!

Of course we had to have a hotdog at the game.

Wednesday night was the big Show Week at the Gym. To say the least I was really nervous about this but it turns out it went much better than I had imagined. Below are his routines on the bar and balance beam. I tried to get his tumbling routine on the floor but after people started clapping half way through he got freaked out and bolted away so I had to run after and retrieve him to finish the routine.

Beam routine!!

Bar routine!

So the next topic I'm planning on tackling is helicopter parenting. Does having a diagnosis make you more aware and protective of what they do and when or have you adapted to it just not phasing you anymore?

How to fail at parenting

Step one: take your child with asperger's to Sports Authority to look for a bike even though he hasn't napped.

Step two: Don't put him in a cart and try to let him walk around the store.

Step three: Cue the inevitable meltdown.

Step four: loose grip of the boy and see him to flying into the goal post of a basketball goal!

Yeah when he first hit I just thought it was another knot on the head and that we would work on this yet again and explain to him that he can't go running off.

Well once I picked him up I saw the blood bubbling out of his head. Ok no big deal still. Sure he's screaming but I would expect it. He just took a header into the basketball goal!

I get him up to the front counter and with the help of the associates get some paper towels on it. During all of this the sweetest off duty EMT came over (that ironically reminded me a lot of my bother in law) and introduced himself and asked to look him over. After a quick look over and me explaining that he doesn't communicate things well said he looked fine and more than likely didn't need any stitches. I thanked him for his help and got him to the car.

The gash on the right side of the picture is the damage he did to his forehead

The funniest part of this was as I was carrying him out of the store he was more upset about not getting to look for a bike!

Then we headed down the road to Jack in the Box for a milkshake. Because with a scare like that I think it was warranted. Even with all the screaming he calmed down quickly.

Strawberry milkshake to the rescue!

After we got home and got him cleaned up he protested the bandaid, but after given the ds and the cooking game quickly forgot it was there.

Batman bandaid!

He acted normally all night so no need for concern.I changed his bandaid to a sponge bob one but soon saw he was bleeding through it since he was still up and moving and not letting it really clot.

By the end of the night I made him wear a bigger piece of gauze taped down to help with any bleeding over night.

The bad thing is after all of this all I could do was laugh at it.I was really embarrassed that it happened in the store, but after he was so upset by not getting to look at bikes and not about his head and both of us being covered in blood, how could part of me not just laugh!

The Look

Out in public we have all gotten it. You know the look I'm talking about. The look from other people with and without kids who think we should just disapline our child better. The ones that wonder why we don't do more to make them be quiet at the grocery store or give us odd looks when they are running around in thier own special way.

Yesterday Butters got to try a TOP Soccer program and during practice I got to talking to one of the other parents and she said they had thier son in The Little Gym until the looks and comments from other parents got to be too much and they pulled him.

Now I honestly never thought twice about the looks I get at the gym until now. I've always gotten more odd looks from the other kids when I come in and re-direct him to his correct group. I probably have gotten looks and whispers from the other parents, but I can't say I care. Most of them talk to one another quite a bit while I stay to myself with my decaf Starbucks drink and my book. I stay out of his sight as much as possible because if he does see me he wants to show off.

So the question I have for people reading this. Have you ever dealt with other parents acting like you and your child were not welcome at a neruotypical or more of a mainstream event for other kids? How did you handle it?

progression/ regression

Since our move across the country from AL to WA we have seen many things out of Butters. In some ways he has progressed with amazing pace, and then there is the unexplained regression.

One thing that I have learned lately from someone I follow on twitter is to not judge a child on what he has done in the past bad or good, but for what he is today.

Lately I have come to understand this very well. Since starting preschool I have seen many ups and downs. Lately he has all of a sudden become very verbal. He goes up to his teachers at The Little Gym and calls them by name. He tells me on the way to the gym who he is going to see. At home he even calls myself, W and Peanut (as well as the dog and cat) by their names. He's coming home from school singing songs and even showing us art work he has made. It has been amazing to say the least.

The problem is that just a week and a half ago he was socially doing better. He was staying with the group in the gym, listening and following instructions better. This week though he was aloof most of the time but very intent at learning everyone's name. At the gym I saw him away from the group but watching everyone and what they were doing. His main interaction was to run up to his favorite teacher was to run up to her, say her name then run away.

So my question to everyone is how do you deal with the progression/ regression cycle? Any tips or tricks on how to get back lost skills other than just being patient?

Making sense of the puzzle

I just read this article in the Charlotte Oberserver and it brought me to tears. What I read is exactly what happened to us in a way, but about a year and a half earlier. I felt the same way, angry, sad and just frustrated that I hadn't noticed the signs earlier!

If you have a child with Asperger's or on the autism spectrum at all please give it a read.

Denial, I has it

About a week ago we sent Butters to a parent's survival night. I dropped him off and one of his favorite teachers was there. He went right to him and started playing with shakers in the gym. When I returned to get him Jesse (favorite teacher) told me that he was rambunctious and ran circles between the gym and lobby but other than that said nothing else. I got a call Monday from the other teacher that was there (also a program director) who told me that when her husband showed up to get her kids he ran out of the door. The entire staff now knows what he did and they are all very worried. Her tone was also of that he really wasn't wanted there anymore. I know she probably didn't mean it but everything that she was saying just made it sound like she and the staff don't want him there. She said he could still do them if I stayed but then what is the point. She also then informed me that she and many others had never worked with an autistic child like him.

Since this happened I've talked to the owner of the gym but I've had some hard decisons to make regarding him staying in the gym. He is signed up for summer camps but after this incident I start wondering if its even the right thing.

I say all of this because on Saturday we were at the Seattle Children's Museum for their early open for autism. I got just a couple of minutes to speak with the intake coordinator for the University of Washington Autism Center. She gave me some more resources to go through and asked what we were doing. I told her and she suggested ABA therapy through UW. She also said she would be happy to send me more information regarding summer programs.

Ever since this meeting I've had a lot on my mind. We are close (45min) away from a great resource but yet we haven't really pursued it.

I finally came to the conclusion that a part of me is still in denial about what is really going on with him. If we aren't pursuing private and intensive autism therapy I just can ignore things. Yes he is in a special education classroom but everything he does just seems normal.

I guess the thing is that we don't baby him or treat him any different than his sister. Maybe the denial all comes from feeling in many ways that he is a normal 4 year old.

I'm honestly not sure what is going on. I did decide one thing this weekend. I am pulling him from summer camp at the gym. I just don't feel like its the best thing for him. I think that if he gets more intensive autism therapy through UW it will help a lot more than just going to the gym and not really being forced to work on things.

My question for anyone who reads this is simple.Did you go through a stage like this? How did you come to terms with what was going on and really begin to move forward?

My name is Butters

My name is Butters. You label me as aloof

  Label me as a flight risk

 

Label me as in my own world.

But the truth of it is you don't know me by first glance. I'm so smart and love my dog cat and even my sister.  I love playing  and watching hockey at home. I'm different yes, but weird no. I'm just like you but with one small difference. I see the world differently. Most people think I see the world in numbers since its my favorite thing and I am already starting to master concepts at a second grade level at 4 years old. My mom and dad take care in public to not expose me to too many new things at one time. Many times you might see me in a stroller in very crowded places. I get really scared around a lot of people I don't know and tend to try and run to a quiet place.

You see I just want to be like you in so many ways but I need you to understand. Please don't get upset when I don't talk to you or make eye contact. Its not you, its just me. I have Asperger's and I just would like to be understood and accepted.