We saw the developmental pediatrician today and received a diagnosis.

[Jennefer@SSA]

She confirmed what dh and I have suspected since ds7 was about 3 to 4 years old - Asperger's. It was a relief on one hand and crushing on the other: a relief because for 7 years I have wondered, "Is it just me? Could I be doing more? Why can't I fix my little boy?" and on and on... Now my concerns were validated by a professional. Crushing because no matter how much you may expect and prepare for something, it's incredibly difficult to hear the words, "There is something different about your child." I have been hoping in the back of my mind she would say something more along the lines of, "Yep lots of "spectrum disorder stuff" going on but definitely not severe enough to warrant a label."

 

She said he was a classic case and would not even be considered mild necessarily. His development from birth on was textbook for Aspie's (do you capitalize that or not?) and I didn't even realize that.

 

She actually spent more time talking about ds's severe ADHD than the Asperger's. She said she could count on one hand the number of children whose ADHD was as severe as ds's and she was amazed that he was academically as advanced as he was considering she couldn't keep him in his seat or focused for more than about 2 minutes at a time. Thank you homeschooling! She really encouraged us to try meds again (our first attempt was a disaster) and that the benefits far outweighed the risks. Still not sure about that one yet; dh and I have a lot of talking to do.

 

Many of you have been such a support to me on this board anytime I have had questions and I wanted to say thank you for that. I feel like one chapter is closing but another is opening. I have much to learn and am realizing I should have been doing more to educate myself all along when I had hunches this was the case.

 

I am so very sad yet relieved at the same time. It is strange for 2 emotions to co-exist but there they are.

 

So last I would like to know...what are the best resources for starting out in the world of Asperger's? Just your one or two favorite books or websites for now. I know I'll get overwhelmed easily. Is there anything out there like "Asperger's for Dummies" :001_smile: (Hopefully the humor is coming through in that).

 

Once again, thank you ladies.

[BMW]

:grouphug:

 

I know what you are feeling... I went through this a few years ago with my son. I don't have but a moment, I know you have support here and don't know me, but I wanted to say I understand. It takes a while to sort through all those feelings... you will...

 

Bee

[jensway]

"I am so very sad yet relieved at the same time. It is strange for 2 emotions to co-exist but there they are." :iagree:

 

Here's a good website to start with:

http://www.udel.edu/bkirby/asperger/aswhatisit.html

 

Best book recommendation:

http://www.amazon.com/Explosive-Child-Understanding-Frustrated-Chronically/dp/006077939X/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1228860210&sr=8-1

 

My son is almost 11 and was diagnosed at 6, so I've been on this road for 5 yrs. At this time we do not use medications--this is a decision that will be up to you and your hubby. For now my son does not need them, but things can change.

 

Yes to finally get a diagnosis can be crushing, but almost comforting in a way. :grouphug: You will be able to find ways to help your son. My recommendation is take a week to adjust to the news and then start your education process. Let me know if there is anything I can help with.

[Tree House Academy]

My son has ADHD, but not the aspergers to go with it. I am sorry you had to hear those words today, but am so glad you now know which road to travel, so to speak. Best of luck to you and your son. ANd praise God for homeschooling!!

[Emmy]

You don't really know me either - lol - but I thought I'd mention, I was thinking of your appointment today. I am glad to read your update. I'm sure the emotions are mixed right now but in the days to come it will feel better to know. I'm glad you got some answers! :grouphug: to you and your dh!

[Jennefer@SSA]

Thanks so much for your thoughtfulness. I am touched that you even though of us today. I truly appreciate it!

[Jennefer@SSA]

And praise God for homeschooling!!

 

Yes, yes, yes and yes!!! :)

[Laurie]

:grouphug:

 

I think this would be a good book for you to start with: The Complete Guide to Asperger Syndrome by Tony Attwood (and it's out in paperback now!).

 

I also have some books for kids and teens for my dc. One of our favorites is: All Cats Have Asperger Syndrome by Kathy Hoopmann. This book uses photos of cats in all kinds of situations to describe some of the sensory issues and other challenges of AS as well as the gifts of AS.

[Laurie4b]

Jennefer,

 

So sorry. Getting a diagnosis--really any diagnosis is hard and there is a grieving process.

Tony Attwood's book is good.

The temptation can be to go to too many future scenarios. My advice would be to stay hopeful. Your child has specific gifts and a special niche in life, just like any other child. You can peel off layers of the onion as you go. Avoid stuff that is depressing. Focus on overcoming the next thing. There is an Asperger's kiddo in our church who is an active member of the youth group, serves as an assistant in Sunday school, etc. The church has embraced him and come alongside him. He has a place in his peer group. I see a satisfying future for him.

[Jennefer@SSA]

Those are great words. Thank you. And I agree that we need to stay hopeful. I know several children with Asperger's but only 1 adult and he's not living a not scenario I would want for my kiddo. Like with so many things, self-fulfilling prophecies can come into play, I'm sure; what you believe to be true will actually come true. That can work both ways - for good and for bad.

 

We are hoping this diagnosis will be empowering for him and for us and not defeating. Thanks for that reminder! :)

[Jennefer@SSA]

One of our favorites is: All Cats Have Asperger Syndrome by Kathy Hoopmann. This book uses photos of cats in all kinds of situations to describe some of the sensory issues and other challenges of AS as well as the gifts of AS.

 

Oh this looks like a great resource. We are such a cat family, too (although right now we don't have one as a pet). What a clever idea!

[Misty]

Jennefer,

I'm so glad you finally have a diagnosis. My 5yo daughter was diagnosed with Asperger's, ADHD, OCD, & NVLD 2 months ago. I have found the HomeschoolingAspies yahoo group to be a great resource. http://health.groups.yahoo.com/group/HomeschoolingAspies/

[Jennefer@SSA]

Thank you very much. I have read that years before when a friend sent it to us. At that time it was such a comfort to them as they were dealing with the reality that their daughter would most likely never walk, talk, feed herself...

 

Now I read it with such different "glasses". It is a precious reminder that all children are gifts and there is blessing in every journey no matter how different it may be from our expected path - or at least that what it means to me.

 

Thank you again!

[jensway]

Thanks for sharing that Christina, I had never seen that way of explaining our kids to someone else.

[sandellie4]

Dear Jennefer,

 

I have children with Asperger's and I also know adults with Asperger's. None of mine are the "genius" type of Asperger's -- they're kids with normal IQs and lots of social problems. When I look at the adults, sometimes I get worried about what will happen when mine get older (especially the teenage ones). But everything -- research and mainstream press alike -- tells me that the world for people with ASDs will be changing a lot in the coming years. The adults we see now usually didn't have good intervention. They were "invisible" and many of the ones who weren't invisible were misunderstood.... We let them down. There is a growing understanding of these kids now and what they need (though these are definitely baby steps). The research is full of calls for more services and more consideration of adults with Asperger's. They have potential to live fulfilling, satisfying lives, and we need to enable them to do that. It will be a long time before your son is an adult, and there are a lot of people working incredibly hard to improve what will be available to help him and lots of others like him to achieve whatever independence they are capable of. I guess what I'm trying to say is that it is largely unchartered territory, but try not to look at adults with ASD whom you may run into during the coming years as a way of measuring what may happen with your son. I would suggest you stay wherever your son is, meet him where he is, and truly learn his strengths and weaknesses. These kids are amazing for their individuality!

 

I can't begin to tell you how many times I wondered if my children would be better off in public school. We've encountered these public school children, and they get an amazing array of services that we can't afford. But none of these services is sufficient in duration and consistency, most aren't backed up by research, and many of these kids, at least the ones we've met, have become increasing resistant and...well...somewhat unlikable as they matured. The schools we have here, anyway, just don't seem to have the understanding or expertise for this group of kids. One of my Aspies is getting ready to start her first volunteer job, at a hospital, and is going to be able to approach this with a good spirit. Only one other teen in her group is starting a "plum" volunteer job this year (most of the other jobs are very low level, partly because of functioning level but partly because of behavioral issues). Everyone else hated the whole idea of volunteering, right from the start, and has ended up in situations where opportunity for growth is minimal. The kids learn the rote job, whatever it is, and are never expected to reach further. Working with our Aspies in homeschool has required a lot of one-on-one time from us, and we can see the difference in how they approach things, especially as they get older. Of course, I had hoped for years that they would grow out of their problems altogether, or that I could teach them until they could find their way out of ASD, but I've learned a lot over the years, too. But I don't wish we had public school or its services as an option anymore. I actually enjoy being with my kids -- a lot of the time anyway! -- and they seem to enjoy being with me -- a lot of the time anyway!

 

Take care and keep your eye on the prize: your son.

 

Sandy

[Niffercoo]

Sandy, I really appreciated your post to Jennefer. I have had a rough couple of weeks with both my Aspie and my other child who is more affected by her ASD. Your post was just the sort of encouragement that I needed today! Thank you!

[Jennefer@SSA]

I had a long response typed out and then hit a key and it disappeared! :001_huh:

 

Now I am retyping just the short version...Thank you! Your insight helped me as well. I appreciate it very much.

 

The rest of my response was pretty much my rambling thoughts, anyway! ;)

[Jill]

I haven't spent much time here (ds is not labeled AS, but has similar sensory issues) but there is an alternative AS site, parenting forum is here:

 

http://www.wrongplanet.net/forum19.html&sid=fef7b5c19bee5222808d8c2b48f5ca81

 

Wrongplanet promotes acceptance of neurodiversity.

[Jennefer@SSA]

I will check out that site. I appreciate it!

[Jennefer@SSA]

I was just re-reading though all the responses I got on this thread. I somehow missed yours the first time around. Thank you also for his link. It sounds wonderful. I have much to learn and I am sure the moms and dads there will be a great resource!