Aspergers - - need some support

[karakim]

The last time I posted on here I had just found out that my son's school (he is in 1st grade) wanted to test him for autism. Its been a while, and he has indeed been diagnosed with Aspergers.

I feel like we have taken this diagnosis in stride, and my husband and I both realize that having this diagnosis will only help him get the help he needs, it is not going to change who my sweet, sweet boy is. And along with the diagnosis we did find out a lot of good things about him as well - - his IQ is well above average. The only areas he really had problems with, is speech which is a characteristic of being an aspie, and he has already improved so much.

From everything I have read, I realize that it could be much worse than it is, and I do feel blessed. I am very proud of my son, and I feel lucky that he is in such a great school. One of the things they are doing for him is he will get to go to some extra therapy for kids like him that they call "Fun Friday". Basically its all about learning social skills that Aspie kids dont pick up on like regular kids. One of the things they do is play games or, role play and video tape it. Then they play the tape back for them and talk about what they could have said/done differently to be a good "friend" etc.

I guess I just feel like I have days where I really struggle with this more than others. I wish I had someone to talk to who really understands, besides just my husband. Last night we went to a performance and my sons school that all of the 1st graders have been working on for months. It was called "Circus Circus" and all the kids dressed up like either clowns, vendors (My son was a pop-corn vendor) lions, elephants, acrobats, strong-men etc. They paraded around the auditorium in their costumes, and then got up on bleachers, 160 kids, and sang circus songs.

My son is very tall for his age so he was on the very top, and oh my word did he stick out like a SORE THUMB!! I feel so guilty for the way I feel about this, but I dont know how else TO feel! All I could keep thinking was that poor music teacher must have been hoping that we wouldnt bring him! Isnt that awful?! I realize that Aspie kids dont see "the big picture" most of the time, and it has to be pointed out to them and this is so true for my son. Part of the performance, each of the kids were given a kazoo and for pretty much the whole 30 min they were up there he just fiddled with it and looked at it! During much of the songs the kids were supposed to be doing hand motions and animate themselves, my son was the only kid not doing a thing! And at one point I saw him stick his hand down his pants! There was one song where some kid had a solo- and it was supposed to be "funny" that he was singing off key and so all the kids would hold their ears at a certain point. My son would start to hold his ears a full 30 seconds (at least) before he was supposed to. . .stuff like this.

Here is where I just want some validation or something, I mean I know he is different, but OMG actually SEEING how different he is up there last night, hurt so bad!! I know at one point I looked over at my husband and we both had tears in our eyes while all the other parents are just enjoying themselves. Im wondering. . .should I have even taken him to that?? Or maybe even though he didnt "perform" is that experience still good for him??!! Before we went to the show, he kept saying he didnt want to go. But I just told him he needed to go and I wanted him to do the best he could. Then afterward, when we went and got him he kept saying "Are you proud of me?! Are you proud of me?!" Of course we told him that we are. I am just kicking myself now that we didnt bring our video camera and film him up there, then I could have played it back for him and showed him how he stuck out!! But, in a way that makes me feel mean, even though I know he doesnt have the same feelings about that stuff that I do. They had a person there that filmed it, and was selling the DVD's for $20. We were going to buy one, but they were playing it back for us to see it, and the way it was filmed you could hardly even see him so it would not have worked.

Anyway, dont know what else to say. Someone please tell me Im not alone.

Kim

[wuvmyangel93]

I am the mum of an aspie actually she has classic autism but when they test her now she is more like an aspie so both words work for me.

Sorry this is long. If I can be of help at anytime please pm.

I will start with the performance piece it is quite likely that the music teacher has too many kids and is unaware that your son needs to learn in a different way than other kids, eventually he will catch on and start to "mimic" the other kids which is just what those other 1st graders are doing.

Your son wore a costume, he stood on the top of the bleacher, near other children, did NOT throw a tantrum, did NOT scream out of turn, did NOT make a scene that is incredible for a child the school feels has asperger's syndrome.

Typically in 1st grade aspies do not like to be touched, be near other children, wear atypical clothing (something other than what tehy always wear), be around loud noises, heights etc.

Your son is only 6 or 7 years old, schools at his age do not test for any learning disabilities if they can say the child has autism or asperger's syndrome it is more money for the school.

NOW I am not saying the school misdiagnosed your son but I am a parent and a parent advocate and your son with the speech issues may not be an aspie or he may have aspergers syndrome with a learning disability.

It is highly likely he has an auditory processing deficit which can look like aspergers, a non-verbal learning disability, or a host of other learning challenges and yes he can have many things with the aspergers or he could just have aspergers.

I wouldn't fret over his performance last night but I would use it as a learning tool.

By sticking out do you mean just because he is tall or because of the costume he chose? Do you mean because he didn't do the hand movements etc.

If its due to him not doing the hand movements and being confused that is so NORMAL even for a typical kid but things that can be worked on with him.

It is awesome he is in a friendship group, AND he needs some ot, possible pt therapy. I would love to see if your school has an ot trained to do the sipt (sensory integration praxis test) this would tell you if he has any sensory issues and how to work on them.

For the next performance make sure the school is giving him an aide to work with him 1:1 a bit extra every week to work on the skills to perform in the performance if the ot can't do this.

Again mine is 13 and the road wasn't easy but we made it. She is not good at singing but loves it so she has been in choir for 5 years and in band for 4 she is amazing on the clarinet.

I will encourage you to find something your son can do that he will enjoy even if he is not good just encourage him and root him on.

Can you put him in tball, pee wee soccer, gymnastics, dance yes dance is incredible for aspie's esp. boys?

I know those things cost many but sometimes states have funding.

Please call your division of developmental disabilities and ask if they have a waiver for services for kids with autism, any special programs etc. and do the same with your state autism society. I am not sure where you are but your son is young enough to qualify for services if your state has them and they will help him.

Both your children are adorable and you did great letting him perform, too many parents don't let their kids try. Being there for your son shows your son you love him and you don't care if he's learns in a different way.

[karakim]

Hi,

thank you so much for your response.

Yes, I was upset, and thought that my son "stood out" because he seemed to be the only kid who was not doing the hand movements like the other kids. To me, he looked like a bump on a log out there when all the other kids were so animated! But I do realize this could have just seemed worse to me because Im his mom, and maybe nobody really noticed like I thought they might have.

I also realize that even though he is considered an "Asperger" he is not as severe as I know alot of aspie children are, or many kids who are on the autism spectrum. The school he is going to is fabulous. They even told me that even if he was diagnosed with this (which I do feel is an accurate diagnosis) that it would not change very much, and he would stay in a regular classroom because he is already making good grades, but the reason they wanted to test him was that he could qualify for additional therapy, to help him with his social skills.

He was diagnosed with a receptive speech problem when he was 4 years old. So, he has already been going to speech therapy twice a week at this same school for a while now. He did have some OT testing as well as the autism testing and he will be getting some OT treatment in addition to the speech and "Fun Fridays".

You pointed out the fact that he was able to be around the other kids, wear a costume and such and not cause a scene and this is great for a kid with "Aspergers". This is one reason that, initially, the diagnosis did come as some what of a shock to me. He has ALWAYS been such an affectionate child. He thrives off of our hugs and kisses. But sometimes it can be too much. Sometimes he will think we are angry with him, when in fact we are not, but will INSIST on getting a hug and kiss before he can "get over it". Also he is OBSESSED with the calender and the daily schedule. At school they MUST provide for him a visual schedule which he relies on CONSTANTLY. And even though he he has been through the routine countless times, he will continue to ask for reassurance. For example, 2 days a week his teacher takes him to speech therapy before lunch, and he will ask EVERY. SINGLE. TIME. "Am I going to be late for lunch? will you come back and get me in time for lunch? will I miss recess? Will I be late for recess?" Even though he has NEVER missed lunch or been late, or missed recess or been late for recess, he will still ask.

At home, the schedule thing does not seem to be as bad, but he does want to know what we are doing all the time, when we are doing it and in what order. If I take him to the grocery store with me, he wants to see my list, counts the items on the list and gets upset if I put more items in the basket than are on the list. And when I say get upset, he is not out of control by any means, but he is rather annoying about it.

Also he is starting to learn how to tell time, and Im not sure if this will be a good thing or a bad thing for him. Im hoping it will make him feel in more control of this whole schedule thing. . .but I worry that it will just cause him to get more upset if things do not go EXACTLY by his watch!

I have tried to get him involved with sports and such, but he just has no interest. Also, Im not sure if its because he is so big for his age (He will be 7 next month, probably the size of a 9 or 10 year old) but he is a bit clumsy also. The thing he does LOVE LOVE LOVE is video games!! I feel somewhat guilty for even letting him get so involved, but how can I keep him from something he gets SO MUCH enjoyment out of?? I do regulate his time with the games, and he has to play outside every day too.

This summer I do not have him scheduled for anything other than "regular kid" stuff. Last summer I had him in so many things trying to help him, and it really wore him out. But Im also not going to let him just sit in front of the tv all summer either. He will be going camping with my dad by himself for a whole week. ( He is actually really excited about this, and I am scared to death!) He will be a ring bearer in my SIL wedding, I will be taking him to Arizona with me to visit family (10 days) where we will be going to a Dimondback baseball game one day, and swimming pretty much every day. And a couple of weeks after that we are all going to the U.S. Virgin Islands for a week too. Where his main concern is: "Do they have a swimming pool mom?!" THEN after that, I will be taking him to my hometown where my brother lives, who is a lifeguard/swim coach/teacher and my brother said he will give him swim lessons for several days while we are there.

After all that we will not have much time before school starts back up. I am a bit nervous about that because when he starts 2nd grade, I will also be staring a nursing program (RN). Im worried I wont have time to give him the attention he needs. But my husband is very supportive, and swears that he will step in and take care of things when need be. **sigh** I just hope Im doing enough for him. I cant help but worry my fool head off. I love him so much, and I want the best for him.

Thanks for listening.
Kim

[wuvmyangel93]

Kim

Your son sounds a lot like my daughter in many ways and yes it was hard to see her perform and not get the hand motions etc. but eventually she did.

With a supportive school and you imersing him in the typical normal things I can see he is thriving.

The calendar and time thing are very very very common for kids with learning challenges not just aspies so it is something they notice right now but really a lot of other kids do it too esp. boys in grades 3-5.

If you can teach him time on an analog clock one with hands/numbers along with the digital it will benefit him greatly. Analog clocks are the ones work time clocks have.

I think taking the summer off is great, mine doesn't like sports much now either she does love to run and loves the pool so we do those and gymnastics.

The gymnastics is more for an out of the box OT than anything.

Both your kids are adorable and I think your son is doing great. He will get the song motions soon, and if you think it is making him "stick" out you can get the music teacher to not do those right now, its a simple accomodation for him.

[justjen]

My son is 6 & in Kindergarten & was officially diagnosed with Aspergers last year. I knew he was on the spectrum a few months before he was 3. There were some things that were a little different like lining up cars & catergorizing things by color, wanting shampoo bottles to all face the same way in the bathtub, ect. But I have to add that my aunt has been a special ed teacher for years so I've been around it for a long time & I was in school to be one at the same time. I am now a special ed teacher who works with a lot of kids on the spectrum from one end to the other.

I can identify with the "sticking out" thing. My son loves being around other kids, although he prefers to watch what they are doing than to do it too. He does have 2 "friends" this year that he actually plays with some, one is also on the spectrum & probably has Aspergers. He too prefers to stand around & not really do hand motions, ect even if we work on them at home. At a church thing this last summer he was "singing" with a group of kids, half the time he didn't sing but played with something near him a little or moved around slightly. When he did sing he still didn't do hand movements but watched the other kids do theirs. And he is the biggest kid in his grade. He is in size 10 clothing & is 4'3 1/2. He also has shoulders of a football player lol. So this helps him to not blend in.

His behavior can go from good to bad quickly although we have curbed a lot of his meltdown behaviors & helped him to start identifying his feelings using the 5-point scale where his emotions are turned in to numbers & this helps him to express his "feelings". 5 is meltdown for sure, 1 is calm. Today was a rough day, he started out with a meltdown this morning before we left for school & stayed "full" through the school day off & on. He does so much better than the beginning of the school year. The school has had to do things like use a picture/word schedule (even though he reads on a 3rd grade level the pictures are still comforting to him), seat him in a desk slightly removed from a group of children, he has a work system, work on his reading & math level (he does 1st grade math), he gets daily sensory time & sensory breaks as needed, he walks to a 1st grade room to do a reading group 3 days a week & a math group 3 days a week. There is an aide in the room almost all day to help facillitate as needed, some tasks such as writing are cut down for him, ect. All these things have helped a ton.

I think making them be involved to an extent is well worth it, they do need that expereince. My son has social stories made for him & read to him as much as possible ahead of time to let him know what to expect & what exactly he is supposed to do. It really works so well! It can even tell him to copy what the other children are doing & it helps some. I think it was wonderful that you told him you were proud of him & of course he made you proud, he stood up there the whole time & performed with his class in front of everyone without getting off stage or melting down, ect. Even if he didn't do as everyone else with everything he was part of it in front of an audience.

My son too loves video games & his DS. I've got him to talk about his DS with other children & some of those games have where 2 or 3 ppl can play at a time. Most boys play video games so this will give him something to talk to others about & if he is good that is great because it can give him an appropriate way to play with kids his age where you don't have to be "social" for a long period of time.

The calendar/schedule thing is completely normal. It's like a blackberry or grocery list for us. Even if we've bought groceries a million times it helps to see that list. They are such visual learners. i made a list that my son could flip over (individual pieces) that told him an order to clean his room (cars/trucks fist, books, other toys, ect). We also use timers so he has a visual to let him see how much longer he is to do a certain task. And he also has learned to tell time to hour & half hour. This helps but also makes me need to be more on schedule lol.

[marianne]

I just wanted to say to all girls: Keep your chin up, your doing a great job. I've three boring boys but they still embarrass the h*ll out me sometimes. And also, there are very "normal" kids out there doing drugs, hurting others etc whose parents will never know half the joy you'll get from your kids. Relax about the other parents; they were only looking at their child just like you, who cares what they think anyway??
By the way, since he is aspergus, there are things that he will sooooo much better at than other kids, and they are things like maths and physics that are much more important than a school play !!

[caz]

Hi, what you're feeling is completely normal.
I don't personally have a child with aspergers but I work with children with profound autism
and I also have a brother with profound autism, he has no speech or communication, challenging behaviours and disrupted sleep patterns. My mum is constantly stressed and exhausted!! I work at and my brother attends a special needs school that is specifically set up for children with autism and other learning difficulties.
Many parents of the students I work with often feel very distressed and isolated, yet they're consistent and unconditional love for their children really inspires me and I find it very touching.
My daghter attends a school with a resource base unit for autistic and aspergers children and they encourage a lot of inclusion with the mainstream students which I think is fantastic, as many people don't really understand autism and often mistake their typical behaviours as 'naughty'. I think widespread inclusion is really helping to make many people more aware of aspergers and autism and it's becoming increasingly more accepted among other people.
It sounds to me like you're all doing a great job and I just wanted to reassure you all that your feelings are perfectly natural and understandable.
Consistency and routine are very important to children with aspergers/autism and from my work I know can make them very distressed if something unexpected or different occurs in their normal routine.
Living with aspergers and autism is a huge and constant learning curve for most people experiencing these issues and in time you just learn to adapt and adjust to it.
There is a lot of support available for families of children with aspergers/autism it's just knowing where to look for it.
In regards to giving them enough attention I think as long as you are as consistent as possible in what you do and make time to spend quality time together doing the things your children like to do you should be fine and your child/ren should be as happy and content as they can be.
I think you're all amazing, keep up the good work