Went to dev. pedi today and received a diagnosis...Asperger's (X-Post)

[Jennefer@SSA]

She confirmed what dh and I have suspected since ds7 was about 3 to 4 years old. 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.

 

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" (Hopefully the humor is coming through in that).

 

Once again, thank you ladies.

[Cornerstone Classical]

I don't know anything about Asperger's. Im sure you are going to get some good advice from some ladies here. I just wanted to give you a big :grouphug: and let you know I am lifting you and your family in prayer. Having a sad but relieved emotion is crazy isn't it? They will fall into place in the days to come. I would just translate any emotion into energy to learn and deal with this new road you are going to be traveling. It is a great compliment that you have worked with your ds and that he is on target academically! You're a good mama who really loves her children!

 

Love In Christ,

Katherine

[Blessedfamily]

I've been back to this thread twice trying to think of what to say. I don't know about Asperger's, though every homeschool board I visit has several parents homeschooling children with it. That tells me a lot. You will make it if they can.

 

:grouphug:

[jensway]

Jennefer, I posted in the special needs board--saw your post there first.

[JennifersLost]

I don't have a lot of answers, but I do have a couple of questions:

 

a. what is your gut "momma" feeling about your child - is he "bright" at school (though hard to get to concentrate) or do you feel he has trouble understanding concepts?

 

b. have you done any food allergy research/tests?

[Jennefer@SSA]

Okay first can I ask about your board name? :001_smile: Been curious about that several times!

 

a. what is your gut "momma" feeling about your child - is he "bright" at school (though hard to get to concentrate) or do you feel he has trouble understanding concepts?

 

b. have you done any food allergy research/tests?

 

Answers:

 

a. he is definitely bright but not gifted (at least I don't see any true giftedness as of yet). He does have an amazing memory. It's almost scary. ;) He does have an incredibly difficult time concentrating and is a very concrete thinker. We are starting to struggle with some concepts that are more abstract but these are our first bumps in the road (other than the ADHD issues, of course).

 

b. We have not done any official testing. We did go on the gf/cf diet last year for 8 months. We were very, very strict and followed the diet 110% with no results but other than that nothing. We are a dye, preservative, nitrate/nitrite free family, as well. I have learned enough about Feingold to know it may be something we need to try but I am very open to suggestions or anything you know and are willing to share! :D

[LNC]

I'm sorry! I'll pray for your family. This is the book you are looking for...

 

http://www.amazon.com/Complete-Guide-Aspergers-Syndrome/dp/1843106698/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1228863943&sr=8-1

[hsmamainva]

First, here's a big :grouphug:

 

My oldest son was diagnosed with high functioning autism / asperger's when he was 6. Homeschooling has helped him tremendously!!! He's able to learn at his own pace and every year, he continues to make great progress!!! We were told that he would never learn to read, or write, or do math, etc., yet he has learned all of those things and much more!

 

Every child with autism is different (our youngest daughter also has autism, although she and my son have completely different personalities!).

 

My son's autism has definitely improved with age! If you're dealing with any sensory issues, I highly recommend "The Out of Sync Child" and "The Out of Sync Child Has Fun". The last book especially gives you many tips on doing your own occupational therapy to help with sensory issues.

 

I also highly recommend allergy testing, just to see if they could play a role, or experimenting with removing potential allergens from your child's diet (my son is very sensitive to artificial colors and preservatives and those things can still send him into a tizzy).

 

But try not to panic. When our son was diagnosed, we were devastated. We wondered if he'd ever learn to drive a car, get a job, live on his own, etc. Now that he's 14, we have a much better grasp on his abilities. We CAN see him doing all of those things...just maybe a few years later than the 'expected age', if that makes sense.

 

There's also a great book out there on homeschooling your child with Asperger's Syndrome. You should be able to find it on Amazon.

[newbie]

Jennifer,

Lots of hugs and support. I do not have special needs children, but I do advocate for my niece who has CAPD, and my friends' son who has Aspergers.

 

This touches my heart, because I see a lot from the outside in. The most important piece of advice I can give, now you have dx, is educate and support.

 

There a ton of materials and info. on aspergers, find and eat up as much as you can. Also, find support in your area. There are parent groups and play groups which are important for them. We have a lot of these groups in San Diego and my friend finds comfort in them.

 

This is also a great space for questions and concerns.

Many blessings and more hugs.

[Tammyla]

:grouphug:

 

Check your library for books titles. The Out of Sync Child, Left Brain World Right Brained Child, and Mel Levine's One Mind at a Time.

 

I'm blessed to know a number of children and young adults with ADHD and Autism.

[Kay in Cal]

I have a son with severe ADHD, borderline Aspie as well. Lots of good recs already, but what has helped most is simply knowing that what works for "most" people won't necessarily work for me, and that "common wisdom" may or may not be helpful when it comes to my ds. I have no doubt he'll turn out to be a wonderful (if unusual) adult, if we can all only survive his childhood. Hugs, and take care!

[DB in NJ]

Jennefer, I have no words of wisdom to offer, but I just wanted to give you a hug :grouphug: and say how wonderful I think you are for being such a good mom! Good for you for following up on what must have been a very hard-to-handle gut feeling.

 

My sister has self-diagnosed my niece and nephew with ADHD, Asperger's, Autism (one each), and food allergies. How I wish she would take them to the doctor, get them (and herself) the help they need.

 

Again, you're a good mom. And your family will be in my prayers. :grouphug:

[Jennefer@SSA]

Okay your location "Cliffs of Insanity"gave me a much needed laugh today! Thank you for the kind words and the smile! :001_smile:

[Jennefer@SSA]

Just went to Amazon to look at the book you recommended. Thank you. 55 reviewers and a 5 star rating is rare in a book. Tony Attwood is one of the only names I know in the Asperger world, too! Thanks again. Off to see if my library carries it and if not to add it in my cart!

[Carrie12345]

Just went to Amazon to look at the book you recommended. Thank you. 55 reviewers and a 5 star rating is rare in a book. Tony Attwood is one of the only names I know in the Asperger world, too! Thanks again. Off to see if my library carries it and if not to add it in my cart!

 

Tony Attwood, Tony Attwood, Tony Attwood. My world revolves around him. I eat his every word.

 

I read a lot of Asperger's books, but Attwood is my favorite by far. He happens to be a very big advocate for homeschooling/cyber schooling aspies in Australia. One of these days I am going to go hear him speak!

[C_l_e_0..Q_c]

Keep hope! Homeschooling is probably the best thing for an Aspie.

 

I always suspected my DS was Asperger, just like you. When I mentionned it to his ped at age 7, he totally dismissed me. Last year (DS was 10), he referred us to a neurologist. She pegged DS as Asperger right away.

 

We spent the summer at the local pool with a lady who works with Asperger children during the year. That lady said "no way, he's not Asperger". "yes way !" was my answer. Then I told her the details and she agreed with the diagnostic. She was very impressed that DS was functioning the way he was! That's the beauty of homeschooling. Because he's not pressured day in and day out, his brain has been allowed to catch up. By now, he's *almost* normal.

 

But not every Asperger child will have that outcome. Every case is different. But you're doing the right thing keeping him home, and giving him group experience under your watchful eye.

[Carol in Cal.]

They started locally, but I think that they have support groups or at least email lists all over the US. They seem to have a group for each major and minor 'syndrome' that exists in children, no matter how rare. And they share the latest information and get each other up to speed much faster than most doctors do, and help with the practical side as well as the medical side--how to access services, which ones are most helpful in which situations, lots of anecdotal results that you can piece together into information that is useful to you. Google them and I think you'll be glad that you did.

 

I have known several children and probably quite a few adults with Aspergers (it is pretty common in Silicon Valley as you might imagine). The hyperfocus of it is the blessing as well as the curse. They can't really generalize as much as other people, but they are extra good at following a logical argument and carrying one forward. I'll bet that once you have the ADHD a little more tamped down, you will be able to teach him an amazing amount of material, and that when he is a little older you will have wonderful discussion with him. Aspergers is much more easy to mainstream into adult life than autism. One thing to keep in mind, as a friend of mine who has an autistic son has told me, is that they develop physically at an age-normal rate, even if their academics and social skills are not always an exact age match. So, for instance, her son is going through puberty now even though in some ways he seems like he is much younger socially than his age. So she is watching out for his emotional swings and interpreting them in that light.

 

She said the same thing that you did--the mixture of relief and dismay was very disconcerting. Still, she became quite an advocate for her son, and he is doing better than most people would have anticipated.

[Rhonda in TX]

But first, :grouphug:

 

I know what you're going through. When the doctor said "definitely Asperger's", which I completely expected, I actually teared up. I knew what the diagnosis would be, but hearing the words was so... final.

 

Anyway, a great book is Hitchhiking Through Asperger's Syndrome, by Lisa Pyles. You live in the Houston area, don't you? Do you have access to the Harris County Public Libraries? If you do, I know they have it.

 

The Complete Guide to Asperger Syndrome by Tony Attwood is good, but more technical.

[Jennefer@SSA]

Thanks! I will go online and request this book right now. We don't live in Harris County but frequently use their library system b/c is is far superior to our own! :)

[Rhonda in TX]

Thanks! I will go online and request this book right now. We don't live in Harris County but frequently use their library system b/c is is far superior to our own! :)

 

It's one of my favorites. The mom/author homeschooled her son for several years and is a big proponent of that method of educating Aspies. She actually gave me the confidence to start homeschooling my son.

[FlockOfSillies]

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!

 

Jennefer, I haven't read the other responses, so I'm gonna post-and-run. But I think you need to stop for a minute and give yourself a nice, big pat on the back. This woman's comments are a testament to your hard work and persistence in working with your son. With all the talk lately here on the boards about hs failures/successes, I think you can count yourself as one of the rousing successes. :hurray:

 

Way to go!

[newlifemom]

pming you.

[JennifersLost]

Hey Jennefer -

 

Glad to see you've looked into the allergy connection. It isn't always there, but when it is it can really affect things.

 

One thing that's helped with my son (may be Aspie - but not diagnosed) is for me to remember that he doesn't "intuitively" get things about interacting with other people. He has to be told every little thing. Once told, though, he usually remembers it.

 

In other words, he needed to be told to look people in the eye. To talk to them. He needed to be coached about small talk. He needed to be told to wipe his mouth after he eats - all kinds of things. He's completely book smart, but comes across sometimes as not so smart because his reactions to people are wrong.

 

Like someone else said, I have no doubt that he's going to be terrific at whatever job he chooses. He's just always going to struggle with people. I think he'll also make some woman a terrific husband in that once he chooses a woman, he will be loyal until the end. He's a great, loving kid. But he's going to have some tough years between now and adulthood.

 

I think the best thing we can give these kids is love and a peaceful home. Putting them in school where their "differences" will be harped on is where the real damage occurs.

[Zelda]

Welcome to the club you didn't want to join but will soon find out is not as bad as you'd think. The more you read the more hopeful you will feel. Tony Atwood has already been mentioned and for good reason. :grouphug: and know you are not alone.

[newlifemom]

Ok Zelda,

 

Your sig line. Tooooooo funny. :lol:

 

Some day I would like to share a cup of coffee with you.:D

[Jennefer@SSA]

One thing that's helped with my son (may be Aspie - but not diagnosed) is for me to remember that he doesn't "intuitively" get things about interacting with other people. He has to be told every little thing. Once told, though, he usually remembers it.

 

I think the best thing we can give these kids is love and a peaceful home. Putting them in school where their "differences" will be harped on is where the real damage occurs.

 

This is one of our challenges...ds's ADHD complicates things so that he knows the right thing to do but his severe lack of impulse control typically keeps him for acting on that knowledge. I know what you mean though about not being intuitive; that's most definitely true of my son as well. We are going to start some specific and systematic social skills training to hopefully see if we can make progress in this area.

 

And I agree too about keeping him home. The doctor mentioned several things to watch out for with a child with severe ADHD (since that's actually the more "in your face" issue with ds) and I feel that we will be able to minimize or even eliminate the risks due to the fact we homeschool. I am more thankful than ever about the road we are on!