new here, son may be an aspie

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First, WP has been a great resource for me.

I'm about 95% certain my 3.5yo son has AS. He was in Early Intervention for delayed speech. He's a sweet kid. He's got some qwerks and is prone to meltdowns if things aren't done a certain way. We have MANY rituals in my house. I remember last halloween he had a pumpkin sweatshirt that he wore everyday for about a month and a half. I had to go buy a second one . Everyone in the house ( family, guests, whoever) must wave to me or my wife is we leave while he's home. If not, meltdown on the way. He never greets people in a "normal" way. Usually he comes up with something totally random. He tends to speak in the same tone although he will on occasion get excited. He also has about a handful of foods he'll eat. His best playdates are with younger kids. He will repeat something until he's acknowledged. We always thought that he might have OCD. There's much more but I don't want to bore you.

We never really though that something was "wrong" until recently. Two things happened, our son started preschool and our 1 yo daughter started walking. After my son's 2nd day of school his teacher called my wife about his behavior. She said that he had problems with eye contact and that he kept to himself in the classroom. Also she mentioned the whole random statements from him. Needless to say my wife and I were wrecks because we were thrilled to get him in this school. We assured the teacher that we would work with him on these issues. Also around this time our daughter became mobile. She was months ahead of our son at the same stages. She's rapidly become more coordinated that him. She kicks and throws better than him already. She's way ahead in communication skills too.

My wife was refered to a psychologist here in town. After their initial meeting, she brought our son in for a "playdate". He mentioned the possibility of AS. Neither of us had ever heard of it. All I heard was the word "autism" which honestly scared the crap out of me. I hope that doesn't offend anyone because all I knew about it was "rain man". I was totally ignorant about autism or the spectrum. After tons of online reading we're feeling much better. We still don't have a formal diagnosis but I'm pretty sure this is what we're dealing with. Getting this diagnosis has been a project and a half because I'm not sure this is the doctor's specialty. It's been a month since their meeting.

Luckily for us his teacher is wonderful and is working with him on some of the issues. We'll let her in on what's going on. She's really put us at ease and give us reports on his days in the classroom. She's made some progress with him. I'm really thankful for this teacher but she can only do so much.

Once the diagnosis is made, how do you inform people (if at all?) about the AS? I'm scared to label him. I'm also worried about telling my parents (divorced). My father won't get it because he's from the "old country". The inlaws are in the loop and suspected something was up with him. I wasn't worried about them, they're really great open-minded people. Do I need to consider private school? I'm not rolling in the cash since my wife's job doesn't pay (stay-at-home mom).

Sorry for being all over the place but this is a crazy time here. What saddens me the most is that he never tells me or my wife that he loves us even though we know he does. We're ready to whatever it takes to help our little guy. If anyone has any advice or recommendations, please voice them. I'm in SE Massachusetts.

thank you,

RC

Last edited by acsdad on 22 Jan 2006, 11:05 pm, edited 1 time in total.

First of all, welcome to WrongPlanet.net. Second of all, I've heard people say that 3 is a very difficult time for a child. I think that you will start hearing him saying that he loves you once he gets a little older. From your description, its pretty clear that your child has AS. When I was his age, I had meltdowns, but I don't have them anymore. Although I'm 19 and I don't know any other 19 year olds who have meltdowns, so this isn't saying much

Anyway, I'm glad you like it here

Hey RC. Welcome to the group.

I wouldn't worry about giving your parents the label. I'd just say Jr. is quirky and here is how we handle it. Its just easier to do that with some people. Save your energy for the important battles....

If I were you, I'd contact my local parent advocacy group and ask them about the public school options in your area. Some districts are just better than others. You sonmight even qualify for public preschool (although I would hesitate to move him since it sounds like his current teacher is so good.)

The free advacocy groups in your area are:

Massachusetts
Federation for Children with Special Needs
1135 Tremont Street, Suite 420
Boston, MA 02120-2140
617-236-7210 (Voice and TTY)
617-572-2094 FAX
1-800-331-0688 in MA
E-mail: [email protected]
Website: www.fcsn.org

Massachusetts (CPRC)
Urban PRIDE
c/o The Boston Foundation
75 Arlington Street, 10th Floor
Boston, MA 02116
617-338-4508 Voice
617-338-1604 FAX
Email: [email protected]
Website: www.urbanpride.org

You might also want to goggle "Autism Society" and MA and see what you come up with. Most state chapters have pretty active parent groups. Again, they can tell you the lay of the land in your area.

Again, welcome.

BeeBee
heh, edited because of very silly spelling error....

Last edited by BeeBee on 09 Jan 2006, 4:23 pm, edited 1 time in total.

Alex,

I'm glad to hear you outgrew your meltdowns. When can I expect my 12 year old to do so?

BeeBee

I wouldn't worry about the cost of his education. Once he is classified, it will be your school district's responsibility to supply him with the most appropriate "least restrictive" environment.

You and they will work this out together in a legally prescribed procedure developing an "Individual Educational Plan" (IEP).

Many people with AS function well in regular school settings with appropriate support. If your son's situation causes for something more than that, the school district will still provide it (even if the appropriate setting is a private schoo), along with transportation door-to-door.

The immediate issues you face are not financial. You must be your child's best advocate and make certain that he receives what is appropriate.

We will be happy to help.

Welcome.

my son wasn't diagnosed until this past summer at the age of 13...all this time, we just figured he was a bit quirky. i wouldn't worry too much about explaining it to relatives ~ unless they are truly understanding, and caring souls ( not many of those in my family ).
we've shared his diagnosis only with those individuals that, knowing a diagnosis, would help them understand and help him more ( his teachers, the school system, and 2 close friends who take care of all of the kids when hubby and i go out).

I too am new to WP. It seems like a good overall resource. My son has been a bit eccentric since about 3-4, although he never had language delays. I didn't pay it much mind since my parents said he was exactly like me at that age. ( ) I do not have diagnosed AS, although I do have many of the traits. If you look at the genetic component and variations on the theme, it would make sense that at one level a person can function and at a stronger genetic expression it becomes a problem. For your family he can be eccentric, weird, computer nerd, etc. Unless dad is so old country that he only will accept traditional male role models, this should suit him. Play up Einstein, Bill Gates, Edison, any non traditional but famous male. Don't admit the label if the person will use that label to limit your kid.

If you've met one aspie, then you've met one aspie.... I don't think they ever truly go away, but like all other aspects of AS we eventually learn to deal with the problem by recognizing the triggers and finding ways to avoid or counter them. My last meltdown was about 8 months ago (at age 39).

Thanks for the tips. I have an appointment tonight with a Doctor so we'll see what happens. I'm just going to keep reading and educating myself. No formal diagnosis yet but I'd be shocked if I was told something different.

thanks,

RC

PS: Alex, if that's your picture, you look an awful lot like one of my best buddies. You could easily pass for his little brother.

Last edited by acsdad on 22 Jan 2006, 11:06 pm, edited 3 times in total.

Yup, thats me

My wife and I had our meeting with the doctor last night and we got the formal diagnosis for our son. The doctor confirmed the AS and is hooking us up with a friend of his who specializes in this. Sounds strange but I am relieved to finally know the source of the meltdowns, qwerks, etc. This doctor really put us at ease about it being AS.

Now it's time to find out what we can do to prepare him for the world.

thanks everyone...

RC

Congrats, I guess. You are now in the same situation that I started 2 months ago. Good luck.

To be honest, I do not think meltdowns ever go away myself. I simply think that we simply get better at controlling them as we get older. Here are a few reasons:

1) Adults can leave and avoid bothersome situations quite a bit easier than children.

2) Unless married or dealing with roomates, adults have more privacy then children and as such can go through a meltdown in a controlled and private setting.

3) Maturity.

In the past year, I had 2 near meltdowns in public. One, I simply went home and let it run its course, the other, I simply took myself out of the situation until I knew I could keep myself together.

Of course, every person is different.

Your son is at about the same age my daughter, Katie, was when she was diagnosed. Like you, the word "autism" threw us for a loop at first, but when her AS diagnosis came from a pre-school psychologist who had spent a year observing her in the classroom, we were pretty confident that it was correct. Early intervention and a great educational team has made such a difference in her life, and she is now in first grade. Having the diagnosis helped us access a lot of services that have helped tailor her school experience to her particular needs.

When we talk about AS with family members or teachers or even Katie herself, we are very matter-of-fact about it. As we tell Katie, her dad has asthma, her mom has hypothyroidism, and she has Asperger's. Everyone has challenges to face, and being different just means each person has to work harder at something than other people.

We're still feeling our way through, and new issues crop up around every corner, but I'm really thankful to have found this site and to get a glimpse into Katie's experiences through the eyes of others who've learned to articulate them so well.