Lurker coming out - Long

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anonymous user
Registered: 12-31-1969
Lurker coming out - Long
4
Mon, 06-21-2010 - 8:15pm

Hey Everyone,
I have been lurking for a while with a post here and there in response to others, but thought I would go ahead and poke my head up. I'm Caren. DS is 3.5 yo just dx with mild to moderate High Functioning Autism/Asperger's. He has been followed by an autism team since he was 11 months old as he had a few red flags. Last year he was dx with SID. So he had a stint of OT and play therapy last year. We had issues with the OT not being the right one for him, so we have only recently found the 'right' fit. He has made huge progress in the past year. So much so that to be honest, I was surprised by his Dx. At 24 months, DS excelled in language (more words than imaginable, reading, and spelling at that time), but in his last eval, he struggled with the interpretation of language. That does not make much sense to me, but I understand testing percentiles, so yes, it is a problem. He is currently in OT again and starts Social this week and Speech next week.

I have become really good about identifying situations that will be successful stepping stones for DS. The autism team did a great job teaching me how to identify comfort and to slowly scaffold onto a positive experience. I am so grateful for our autism team. Anyhow, during the Spring, I had him enrolled in a Montessori school 2 days a week per recommendation from the autism team. DS did better than I expected. I did not tell the teacher about his issues, as I wanted to see how he would do in a 'normal' environment; I did tell her he was there for social exposure and those updates were the ones of most interest to me. At the end of the year, I clued her in so that she could learn the signs as well. We had some behavior at home due to stress, but I bore the brunt of most of it. I found a soccer class that fits all his sensory needs, is small enough to not be a challenge socially, etc. and he LOVES it.

So from all the positive things he has accomplished, my take on the diagnosis was that he needs a little help socially and with senses, but overall, he will easily be mainstreamed.

Then Sat happened. His Spring soccer class is not being offered in the summer. Instead he has to attend a Sat class - HUGE class, class at the same time as others in the same area, coach screaming to try to maintain control instead of encouraging the slower ones along, etc. Within 5 mins, DS started stimming like I have not seen in about a year. The coach yelled at him for being excited about soccer (she was explaining instructions, he thought it meant go time) and he was done. He stayed with the group and did not leave/come to us, but he did not listen to ANY instruction provided from the coaches. They basically lost his respect and he wasn't about to do anything they told him to (which of course, made the situation worse). We pulled him out part-way through class, I am trying to find a better fit again, yada, yada, yada.

Anyhow - I am finally getting to my questions. Are we always going to have to really 'place' DS into the right situations? Are we looking at a lifetime of OT, Speech, and Social? Are things going to get worse? If so, how? Another concern is his independence. Don't get me wrong, I love that he is not subject to peer pressure at this age, but it is not due to confidence, it is due to the fact he really does not care. How do I teach him how to be a friend if he could not care less? How do you teach him to be friendly yet also be aware of dangerous situations?

I guess I am still adjusting to my reality. It is strange because at home, he fits our family so well, we do not notice that he is different. Neither DH nor I are very social people, which I think does not help the situation that much either.

Thanks for listening if you made it this far.
Caren

iVillage Member
Registered: 10-03-2003
Tue, 06-22-2010 - 2:50pm

Hello Caren,


Welcome.

iVillage Member
Registered: 03-26-2003
Wed, 06-23-2010 - 2:08am

Caren,

This is a long process and a lot does get better as they mature, they may mature a little slower in some areas and they may always need some accomodations but really we all need some accomodations now and again.

The fact that he has been able to be successful in a regular smaller group soccer is amazing and perhaps this teacher and bigger group just isn't the right fit for him at this time. Perhaps she isn't the right fit for lots of kids that age actually.

My 2 oldest who are on the higher end of the autism spectrum never even came CLOSE to success in any kind of soccer or mainstream activity at that age without lots of support and accomodations. Actually up until probably 7-10 they were either involved in special needs activities or not at all.

Now they are both in marching band. My older daughter has been mostly successful with some snaffu's and this is my younger ASDs first year. He just began his very first "typical" activity with success about 2 years ago - Piano lessons. It is his special interest and his instructor gets him and it has been wonderful.

At 3-4 I would NEVER have imagined what they do now was even remotely close to possible. They have made incredible progress in their own ways.

Are they still autistic. Heck ya. My daughter can fake it with friends. Her teachers need to know but other wise she comes off as eccentric, quirky, individual, a bit aloof and occasionally rude but individualistic. Mike is a little more obvious but currently they both attend youth group, band and other activities on their own, for the most part blend in and while I make accomodations from a distance to help them deal no one else is the wiser.

So I guess my point is you just don't know what the future holds but it really can hold so much more than you expect.

When my daughter was 4 I thougth she would never hold a conversation with me or live on her own. I never thought that my son would ever be able to stand the sensations of a hug or social situations. tonight I had a LOT of conversations with my daughter as she struggled to understand a problem she is having with her boyfriend. Who'd have ever thought that!

Anything is possible.

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iVillage Member
Registered: 01-07-2008
Thu, 06-24-2010 - 8:56am

Welcome to the board,


A very quick answer to your question is that, this will not get 'better' with age. If by that you mean, will it go away? the challenges he faces will change as his social environment changes and as he grows and matures. Kindergarten will pose challenges, as will school, and high school different challenges again. You don't grow out of ASD and it never ever goes away.


Some things will get easier as your DS aquires the skills to deal with things, some things will get better as you and his school and his social network learn about how to support him. OT, speech therapy, etc will help with some challenges - but then some things will get harder as new problems and issues emerge.


this is actually no different from the trajectory of an NT kid though. Every single parent who has had a poor sleeper/delayed potty trainer etc will tell you that you think OH MY GOD THIS KID WILL BE IN DIAPERS WHEN HE GRADUATES!!! And then you find they won't. But then they spend ages not being able to ride a bike. Or can do brilliantly at music but can't read. Or, like my 11 year old, can do university-level physics and creative writing, compose symponies, but not tie his shoelaces or ride a bike without melting down.


There's a lot of joy and heartache ahead, and sometimes it will feel like a bit of a rollercoaster. Because the ASD will not go away I would say expect your kid to be needing some kind of support throughout their life: what is impossible to say at this stage is what kind of support, for how long, and how effective it will be. You'll need to respond to each challenge as it arises.


But you know, *none* of us lives without support. I just had to navigate my way through a Danish city not speaking the language, and there was no shame in saying "I don't have the skills to do this, I need help!someone help me read this map!"


Kirsty


"My definition of housework is to sweep the room with a glance"


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