Thursday, November 18, 2010

Into the great unknown

I'm scared to type it for fear that it could be true. **If cursing offends you, move along**

We have known for a long time that Nathan was delayed in speech and communication. He started preschool and has already made some vast improvements, but he is still nowhere near where he needs to be.

Well, now, the school therapists, teachers, and resource specialists say that Nathan has a mild form of autism. They say it could be something called Asperger's Syndrome. My heart is breaking into a million pieces. I really know virtually next to nothing about this. Pediatrics has never been my forte and mental health ranks up there with pediatrics. But I can't help but fear for my sweet child's future. I hear the word autism and my whole world just shatters.

I want him to go to college or trade school or whateverthefuckhewantstodo school. I want him to meet a special person and have a lasting relationship with her or him. I want him to have a normal life god damn it. Haven't we been through enough? Hasn't our infertility been enough? Why us? Why him?

I'm angry today. I'm angry that I don't have all the answers right this fucking second. I'm angry that they think that there is something wrong with Nathan. I am angry that a small part of my mind is wondering if they are right.

The speech delay and sensory issues I could handle. Because I could fix those things. I could implement a sensory diet. I could handle speech and occupational therapy every day for a year. I could do those things because it was making my kid better.

What can I do know? I mean, besides sit in a little room on December 1st and listen to other people telling me what is wrong with MY son. December 1st is our case conference meeting to discuss the outcome of the evaluation. The evaluation that I received a copy of today. That clearly states that he has some of the markers for this diagnosis. SOME! What does that mean?! Is there a fucking gray area here? He either has it or he doesn't! And then I realized that autism is a giant fucking gray area.

There is NO cure for this. Sure, there a bazillion websites out there that prey upon parent's desparation saying "This IS THE autism cure!" and "pay a million dollars for the OFFICIAL cure to autism.". But there isn't a fucking cure.

I don't even know what to do right now. I can't even find what the prognosis is for someone with Asperger's syndrome (my fucking spell check doesn't even recognize that Asperger's is a word). Some websites say that kids do well with it and it just presents as some social delays. Other websites say that he will never be living on his own. And I just don't fucking buy that. My kid could survive without me here. I could drop dead in the morning and I know the house would still be standing by the time Brandon got home. He can get his own food and dress himself now. So it can only improve from here, right?! Or not, says the internet. Sometimes cases worsen over time. Well shit.

So there you have it. My sweet gorgeous child who I love more than the air that I breathe has this thing called Asperger's. And now I have to put on my mama boxing gloves and go to battle for him. You better fucking believe that he will have the best doctor in the state watching out for him. You better believe I will be getting him in every single therapy I can find. And you better believe that I will never, ever let this get him down. Fuck no. He is going to be president of the United States, ya'll. You heard it here first.

13 comments:

Jenn said...

Mandie,

I just want to let you know that my niece has the same type of Autism and she is doing great. SHe is 10 now. She had a lot of delays like Nathan and has come a long way. I do know that you must work with your child to get to that point. I know you will do that for Nathan as you already are. I also have a friend she is 31 years old with Aspergers. She is an insurance agent and she lives on her own. She is fully functioning. I do know that there are times that she can not wait or sit still everyonce and awhile but nothing serious. I just want you to know that he will be okay and I will pray for you all. If you have more questions I will be glad to talk to you.

Amanda said...

Oh Mandy, I am so sorry you are dealing with this. Asberger's (*if* that's what the conclusion is here) is NOT a death sentence by any means. My husband, although never formally diagnosed, identifies himself as someone with Asberger's. Of course he is perfectly able to do whatever he wants, has a few college degrees, is successful, intelligent, etc. Some things have been harder for him, especially as a kid in the social context, and even today, but his parents also did not do much to help him (in fact their "help" was more hurtful). I know it's scary to hear a word like autism in the same sentence as your beloved child, I can't imagine how you are feeling right now... but this doesn't change who Nathan is or who he will be. He has so much going for him - most importantly the unwavering love and support of his parents. So no matter what label they put in his chart, it WILL be ok! Think positive and try to talk to some other parents who have been here.. I think that will help calm your fears. You will be in my thoughts! <3

Erika said...

Mandie, I just want to second (third) what others have said. Because Aspergers is SO gray, there are many many degrees and I don't think it's a prison sentence for you or him. On the other hand, having Rory diagnosed with ADHD and ODD has totally rocked my world, so I understand your instinct about the diagnosis. Hang in there, friend. xoxoxo Erika

Serena said...

I have it. My fiance has it. It can have it difficulties but we are both intelligent and educated people with above average intelligence.

Asperger Syndrome is not a death sentence and there are things about having it that I wouldn't give up for the world.

Anyway, Good luck and I highly recommend this blog: http://life-with-aspergers.blogspot.com/

The blogger has it as do his two sons. In fact there are many helpful Asperger Syndrome blogs out there, but his is one of the best.

Mandie said...

Thank you all.

Serena- Thanks for that blog. I didn't even think about looking for blogs about it. I just need to know that there are adults living with this and managing it ok.

Sarah A.T.J. said...

Mandie, I'm so sorry your family is dealing with this. It's not fair that your perfect son has to go through this, I can't imagine how monumental it is for you.
As a teacher, I had a couple students each year with Autism or Asbergers and all those children were so precious and wonderful! Some were so high functioning that they were able to do anything a general education child could do. The thing that stuck out the most was that all those Autism/Asbergers kids had parents that fought very hard for them. You will fight for your son and this will help him so much!

neurologicallyimpaired said...

Your beautiful baby will grow up to be a wonderful adult! I'm a 40 year old mom of four and I have Asperger's syndrome.

Yes, there are issues that need to be worked on. But, you have the advantage of early diagnosis! I never had that advantage. It has taken me most of my life to understand why I am so different. But, with the help of a wonderful man and beautiful children I am happy. I wouldn't change who I am.
Serena is right about the blog Life with Aspergers. It's a wonderful blog that I visit quite frequently.
http://life-with-aspergers.blogspot.com/

With the right therapy, your son can be very successful in life.

Good luck and cherish your son for who he is. He will most likely be very intelligent!

Hugs,
Erica

adelev said...

*Hugs* I know it must be unbelievably hard to hear something like this. Remember, it is just a label. It may help get more appropriate resources and therapies to help Nathan more quickly. Beyond that, don't give it too much weight. I have OCD. Both my husband and my daughter are *extremely* resistant to saying that my daughter has OCD. Does she? I don't know. I know she has some thought patterns and behaviors that most people don't that I recognize and associate with my OCD. So I try to help her with those. I also know that the official diagnosis was a tremendous relief for me, because it finally put together all the seemingly disparate symptoms I have.

Another important point - as you have said - this is a gray area. I know you know that, but it really really is! Aspergers is NOT autism. And the experts say Nathan has *some* of the markers for a diagnosis of Aspergers. There is a quiz for adults going around the internet now that looks for some traits of the autism spectrum. Average score for women is about 15. People with Aspergers tend to score 32 or above. I scored 29 on this test. I think it is likely that if I had been evaluated as a child using the evaluations they use today I would have shown "some" of the markers for Asperger's.

Finally, focus in on what Serena said about "there are things about having it that I wouldn't give up". Some people with Asperger's advocate thinking of it as a difference rather than a disease or disability.

I think you are on mothering.com. If you look in the Special Needs Parenting forum you will find lots of threads about ASD (Austism Spectrum Disorders). I suspect these will be from mothers whose parenting style will be more likely to be compatible with yours (attachment parenting, natural family living, etc.)

This is hard, but you and Nathan are going to be JUST FINE!

Adele

Mamakims said...

Oh, mama... no matter the outcome of the meeting on Dec. 1st, Nathan will still be the same. He'll still be your son, the exact same son before any of this came about... nothing about him will have changed at all.
My son, Parker is a year younger than Nathan and from reading past posts on Nathan, I think we're going down the exact same path just a year behind. Right now it's speech and sensory issues that we're dealing with...and I don't think it'll be too long before I make this exact post.
Big hugs to you. :)

Shannon said...

I'm so sorry! I had no idea! :(

Erin said...

I'm sure he is going to have a wonderful life ahead of him, because his mama will move mountains to make it happen! Hugs!

Christina said...

Mandie, I am no help with any of this, but I do know that you are a great mother and will do whatever it takes to help Nathan be the best he can. Hugs to you.

Twisted Cinderella said...

((hugs)) my oldest daughter has it.