Because I thought my friends here would understand.....

[Pembo]

I had my AN surgery in June 2004. The 6-8 months preceding surgery were difficult as I slowly deterioated and had no idea what was going on. Surgery left me with complete facial paralsys that has continued to improve albeit slowly these past 3 years. I was finally at a place in my life that I believed I was coming to accept what has happened to me and I actually was starting to feel more confident in my place in the world.

Our now 11 yo ds was diagnosed with ADHD at age 4 and has always been difficult. Last month he was diagnosed with Asperger's Syndrome. For those unfamiliar with AS, it is on the autism spectrum. Like when I heard I had an AN, his diagnosis brought relief however a month later and I find myself back in the throes of the grief cycle again.

I have already heard the dreaded comments that were so un-helpful at my own diagnosis. "Well, if he has to have a disability, this is a good one to have."  Quite reminicent of "if you have to get a brain tumor, it sounds like you have the best kind." 

I know that things will improve with time but again I'm facing a new normal to adjust to, well meaning people with comments that will hurt more than help, and I will once again learn more about something I really didn't want to learn about.

I'm typing all this to say, I appreciate the support I get on the AN boards. I'm more often a lurker and try to support when I can. I hope I can quickly find support for this new journey like I've found for my AN journey. Thank you.

[lori67]

When it rains, it pours - doesn't it?  Like you didn't have enough to deal with.  Somehow we all seem to handle it better when it's us - not our children.

I have a good friend who has a 7 year old son with Asperger's.  It took them a while to diagnose him also - it went from ADHD, to developmental delays, etc.  Anyway, I know how difficult it has been for her since she had never heard of AS before either.  I am a physical therapist, and had the opportunity to work at a preschool for children with autism and AS - at the time when no one had heard of AS.  Fortunately, they've come a long way since then.

My friend's son is in a regular class at school and has a tutor that works with him for some subjects - I honestly don't think he needs the tutoring part - the kid is as sharp as any kid I've ever met - probably more so - but he does need some help in the social areas.  My friend Sue works so hard to make sure he gets whatever special attention he needs, but always tries to keep him feeling "normal" like the other kids.  I just think people need to be educated so they know that kids with AS are just as "normal" as any other kid - they will grow up to do great things too - they just might do it differently than what some expect.

There is a really good book I read recently called "Born on a Blue Day" - can't remember the author - but it's written by a man who has Asperger's.  It really gives you an idea of how his mind works.  He was interviewed on one of the morning talk shows last spring also.  It is really interesting - I'd recommend it.

As for people saying stupid things - if anyone could find a way to stop that - wow - that would be a miracle.  Once again, I think it's a lack of knowledge that makes them say these things and most of the time, they mean well.

How lucky he is to have a family that cares so much for him and worries about his well being. That is so important.  Keep your chin up, love and encourage that little bundle of energy and I'll bet he'll surprise you with everything he's capable of.  He'll probably put a lot of those "normal" kids to shame.

I will check with my friend to see if there are any websites or anything she recommends for information or support or whatever and I'll let you know what I find out.

Take care of YOU also!
Lori

[Gennysmom]

I'm so sorry to hear about no peace for you.  I think an AN is enough to deal with in one's lifetime.  I know of AS, and yes it is a high functioning type of autism, but it is autism none the less.  I know you know what it's like to struggle to be normal, and to have to watch your children have a similar struggle must be worse.  You want the best for them and for them not to have complications.  Know that you do have friends here and we're here to support you in your struggles and triumphs.  Just remember that there are good days ahead for you both, and savor those when you can.  Take care of yourself and just think the relationship you have with your son just got a little more special.  

hang in there, thinking of you both!

Kathleen

[Pembo]

Thank you both for your encouraging words.

Lori, Born on a Blue Day was written by Daniel Tammett, who I recently was required to hear speak for one of my graduate classes. It couldn't have been at a more opportune moment. I'm weeks away from my special ed licensure. I never imagined I'd have a child with a disability considering he is already 11.

Knowledge is power....I just wish everyone else would want to be powerful like us.

[4cm in Pacific Northwest]

Pembo,

I read all this and one thing I realize is that your child is in good hands… perhaps it was no coincidence that you were working on “special ed� grad courses when the diagnoses finally came out.

I was working as a teacher advocated with and for  profoundly gifted genius kids when I came to realize my eldest (then 3) was to be part of these “out-of-the-box learnersâ€? (who ironically in many states and provinces are also classified as “special edâ€?.) I can see some readers rolling their eyes  as they feel profound genius minds cannot be comparable to Asperger's… well I can tell you the parents have to work extra hard in the “socializationâ€? in both situations … just in different ways... Making sure their child is in positive and accepting social situations.

So I already know that your child is in good hands… now we need to take care of YOU being in good (and supportive) hands. Try to find a parent forum and support group for Asperger's in your area.

I am not sure of your geographical location- but you could start with this google search
http://www.google.com/search?sourceid=navclient&aq=t&ie=UTF-8&rls=GGLD,GGLD:2005-11,GGLD:en&q=Asperger%27s+parent+support+group

In this wild journey you will be the stronger for it.

Keep moving forward.

Cheers,

4

[leapyrtwins]

Pembo -

I don't know anything about Asperger's, but I also have a son (soon to be 12) who has ADHD, so I can relate to that part.   Life in my household is different from other households, but we have learned how to adjust.  I'm a single parent, so sometimes it's especially challenging.

Please know that there are lots of us out here who support you.

Jan

[Lisa Peele]

Hello AN Friend,

I've been on the forum less frequently recently, but did stop by today & saw your post & just wanted to offer my support.

As the mom of a "special needs" child also, I can relate to all the additional concerns with this new diagnosis.  If I could share something that might help with your processing of this new information...it would be to remind yourself that your son has not changed as a result of the AS diagnosis.  It is new information for you to consider, but the diagnosis does not change him.  Having Bridget (DS) has helped me realize that each child is a person first.  Any diagnosis is after-the-fact...it's a part of the person, but it is not what defines the person.  Don't let the diagnosis change how you or others perceive your son, but instead let it help everyone to understand more about how he works.  Your son is exactly who he has always been...now you just have a little more information to help make sense of things. 

It's not an accident that you have received the training and knowledge to help you manage through some of the "special needs" issues (especially with regard to education).  You are getting to see your field of study from the professional as well as the personal side, which--while unwanted--has it's benefits.  It might not be comforting at this point, but your unique vantage point will help so many other parents who are going through the same things you are experiencing right now.  You have the ability, the patience and the passion to do this, Barb.  You would not have pursued your degree in the field otherwise. 

Advocate for your son and take care of yourself, too.   Stay strong, focused and positive.  I am available via phone or email if you need an ear (I still have one that works!), or shoulder .

All my best,

Lisa