Re: The Official Diagnosis

[Guest guest]

OHHHH I can so feel you on this one!

My son Jake will be 9 next week, and we just got an official dx of High Functioning Autism and Sensory proc. Disorder and Dyspraxia.

Jake has been treated for almost 5 years with ADHD and even an Aspie dx at one time. FINALLY after all these years, I found a specialist and as she said, " I cannot believe he hasn't been dx with this before." She was so shocked.

I have known for years he had HFA and SPD. I have told every dr and counselor this. They never tested JAKE, they always asked us parents the questions. This specialist that came down, spent the whole day with HIM, testing HIM. She said she knew within 5 minutes of meeting him.

So a few days after this official dx, I literally broke down in tears. I knew this word AUTISM, had fought for this for years, and now FINALLY we have it. I was terrified of THAT WORD and didn't understand why. So for a few days there I was so depressed and just mad at the world. Just that official dx of Autism really got to me.

I realized I had fought for so long, lost friends and family, lost my marriage, all for just fighting for my son...and FINALLY I was vindicated. It was a rush of emotions like you cannot believe.

Here is the Myspace blog I wrote about it.

Tracey

~~~~~~~~~~~~~~

Jake has Autism. There I said it.

On Monday it was confirmed that Jake does indeed have Autism. My first reaction was unbelievable relief. I was so happy I was giddy. 5 years of kicking and screaming and begging dr's to test test him came to a halt on Monday. I was vindicated. I was right all those years. Jake has Autism.

As Wednesday approached I found myself saying over and over in my head, " Jake has Autism, Jake has Autism." Why am I doing that? Surely I am not trying to convince myself of this diagnosis. I have known this without a doubt for years. Why am I repeating this over and over again?

So last night it hit me like a freight train. Jake has Autism. The wall of emotions that hit me were suffocating. What the hell is happening here I ask myself. Why am I crying? I have never really cried like this over Jake's issues. I have always taken it by the horns and dealt with it. I am the strong one.

I AM the strong one here. I have stayed up all night Googling everything imaginable, each little quirk Jake has and does, every childhood disease I could think of, every support group I could find, ANYTHING remotely related I looked for. I have 500 bookmarks for sites that MAY have the answers. I have done this for 5 years.

So why now am I a crumbling mess? Why after 5 years of me knowing this, trying to explain to people, trying to justify Jake's quirks, trying to make people understand...WHY am I a weeping mess after this confirmed diagnosis. I KNOW THIS. I HAVE KNOWN THIS FOR 5 YEARS.

Nothing has changed. Jake hasn't changed. It's THAT WORD. Autism. THAT WORD is confirmed. It's what I have fought for for so long. Why am I sitting here barely able to type from crying and shaking so hard?

I have thought more about his future these last few days than I ever have. WHY? THAT word just conjures up all these images that I guess I haven't faced yet? I have been so concerned about the present, fighting to get him help, I guess I never really thought about his future much. It's all been in the " here and now."

Why does THAT WORD have to change things?

Jake will now get more services, more therapy, maybe more understanding, I SHOULD be happy about this. I SHOULD be celebrating. This is not a new WORD in our lives, but it seems like it.

Hell maybe now people will understand me more too. I have been accused of being crazy. I have been accused of being obessed with Jake. If YOUR child was sick and nobody gave you a straight answer, TRUST ME, you would be " crazy and obsessed" too.

I have lost friends and family and even my marriage. Those people that were closest to me, turned their back on me. They didn't WANT to hear it. They didn't WANT to deal with it. They didn't believe me. They had better things to do. Some days I blame them some days I don't. Right now I have moments of wanting to shove all of this in everybodys face with a big fat, " I TOLD YOU SO" and " WHERE THE HELL WERE YOU WHEN I NEEDED YOU MOST?" I have that right to be pissed.

Nobody has cared that we have to live differently, nobody cared to know why. I have been judged harshly, talked about, told I am crazy, and lectured on what I should do. Are you kidding me? Whatever happened to just LISTENING? The stress of the last 5 years, the divorce, Jake's issues, financial difficulties, giving up my own life, has been immense, it's been CRAP. I am not one to hide my emotions, especially the extreme emotional roller coaster of the last 5 years. I needed those closest to me to LISTEN, to BELIEVE me, to TRY and understand.

I have been completely alone in this fight. I deserve to be pissed right now. I deserve to tell people, " screw you", I deserve a day of hating the world and everybody in it, I deserve the right be a crying mess. Why now? I don't know.

My feelings are ranging between this huge sadness to fighting mad. I have been sad and mad before, but never like this. It's that damn word... AUTISM. It's JUST a word I know. It's not a defining word for who Jake is...IT's JUST A WORD, I keep telling myself. I have known THIS WORD for 5 years.....why now is it getting to my most inner core?

Am I weeping mess because the fight is over? Because I can now say I was right? Because hopefully now those people that judged me feel like crap right now? Yeah I know that's not nice....but right now I don't care.

I am giving myself today to hate the world and feel sorry for myself. Tomorrow I will tackle this head on as I always do. I will schedule Jake's therapy appts., dr. appts, Neuro appts., and hopefully get the MRI results back this week. I will stress over paying the bills or paying a dr. copayment or Jake's prescriptions, we will fight to get homework done, I will try to get the laundry and dishes done. I will continue to encourage Jake to try new foods, to get dressed by himself and to tie his shoes by himself. I will embrace THAT WORD (eventually) and continue to educate those willing to listen and I will continue to learn. I WILL feel sorry for those that turn their back on us and not see the joy of MY SON as I do.

I will embrace the fact that Jake tells me he loves me and tells me that I am his best friend. I will worry about whether I should tell Jake THIS WORD, and how will I tell him. I will now worry about his future. I will continue alone, because as Jake always tell me, WE ARE the power of 3.

Life will go back to being the same TOMORROW.

In a message dated 2/21/2009 7:54:21 A.M. Central Standard Time, Bacasa3@... writes:

I've been lurking here for quite a long time, and I guess it's time I became a little more active. My soon-to-be 9 year old son was diagnosed with ADHD/ODD about 2 years ago. I've been suspecting for quite awhile that there was more to it than "just" ADHD and based upon what I had heard and read thought he might have Asperger's. Well, tonight our BSC brought over the report from his most recent appointment with his psychologist, and the ADHD diagnosis has been changed to Asperger's -- still with the ODD. I'm having so many mixed emotions right now. I thought I'd actually be relieved when this day came because I had suspected it for so long and wanted him to be eligible for the social groups that he wasn't eligible for with the ADHD diagnosis because he needs them so bad. I'm not feeling very relieved. I'm actually having a hard time now dealing with the fact that my son falls into the autistic spectrum. It's not a horrible thing, I know, but it's just something I guess my brain needs to digest. Then, I'm mad that no one figured this out sooner. Would it have changed anything? I don't know, but maybe. And, I find myself questioning the whole thing. If someone could diagnose him with ADHD 4 months ago, how can he now "suddenly" have Asperger's? I know the diagnosis is very objective, and it's not like there's a "test" to give the correct answer. But, who's to say that in 4 more months they won't say it's something else? Sorry I'm rambling. Guess I'm using this as my therapy right now. Sorry! Anyway, just wanted to say hi since I'll probably be posting a little more now that I "officially" belong here. Thanks for letting me lurk for the time that I have. I've already learned so much from all of you and I'm sure there's a lot more I need to know.

Debi

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[Guest guest]

My son (12) was diagnosed w/ Sensory Integration Disorder when he was 4, ADHD in Kindergarten, and generalized anxiety disorder when he was in the 2nd grade. In 6th grade, we finally got the Aspergers diagnosis. I don't believe my son has all of these diagnoses though. I think he has mild Aspergers, some anxiety, and he's very intelligent. Put real smart w/ socially awkward and that's my boy. As he gets older, learns different coping skills, etc... I think it's easier to see the "true" problems. Awhile back though (part-way through elementary school) I gave up w/ the diagnoses and just focused on the presenting behaviors, knowing those would change to some degree along the way (and I was right!) I would encourage you to do the same. And you're right. You need time to "digest" it. It takes awhile. But again, I wouldn't get so caught up in the

diagnosis. A lot of the symptoms for so many of these neurological diagnoses are similar if not the same.

"Over-optimism is waiting for you ship to come in when you haven't sent one out."

From: "Bacasa3@..." <Bacasa3@...>Aspergers Treatment Sent: Friday, February 20, 2009 10:07:34 PMSubject: ( ) The Official Diagnosis

I've been lurking here for quite a long time, and I guess it's time I became a little more active. My soon-to-be 9 year old son was diagnosed with ADHD/ODD about 2 years ago. I've been suspecting for quite awhile that there was more to it than "just" ADHD and based upon what I had heard and read thought he might have Asperger's. Well, tonight our BSC brought over the report from his most recent appointment with his psychologist, and the ADHD diagnosis has been changed to Asperger's -- still with the ODD. I'm having so many mixed emotions right now. I thought I'd actually be relieved when this day came because I had suspected it for so long and wanted him to be eligible for the social groups that he wasn't eligible for with the ADHD diagnosis because he needs them so bad. I'm not feeling very relieved. I'm actually having a hard time now dealing with the fact that my son falls into the autistic

spectrum. It's not a horrible thing, I know, but it's just something I guess my brain needs to digest. Then, I'm mad that no one figured this out sooner. Would it have changed anything? I don't know, but maybe. And, I find myself questioning the whole thing. If someone could diagnose him with ADHD 4 months ago, how can he now "suddenly" have Asperger's? I know the diagnosis is very objective, and it's not like there's a "test" to give the correct answer. But, who's to say that in 4 more months they won't say it's something else? Sorry I'm rambling. Guess I'm using this as my therapy right now. Sorry! Anyway, just wanted to say hi since I'll probably be posting a little more now that I "officially" belong here. Thanks for letting me lurk for the time that I have. I've already learned so much from all of you and I'm sure there's a lot more I need to know.

Debi

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

Thanks, Tracey and . It's great to know I'm not alone!!!

Debi A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

[Guest guest]

Debi, 4 weeks ago I was in your shoes, using the exact words to describe my feelings. What you need right now is to reach out to parents... the more the better. In a few days you will have your feelings all sorted out. And then comes the joy and gratefulness at finally having a name to describe your son!

BestMomBrooklyn!*******"It doesn't matter what the label is, it matters what you do with it!"

[Guest guest]

Debi,

First, HUGS!!! You need them. I think a lot of people go through a

phase of being a bit freaked out when a spectrum diagnosis comes. I

think moms know better than anyone what diagnosis fits once they know

all the signs and symptoms. I diagnosed my son myself when he was

3. The school came to the same conclusion when was 3.5.

It will get easier. Your son will still be your son and you still

love him the same way, you just need to incorporate this new

information. If the diagnosis is correct some things will eventually

start to get easier. The ODD might go away once the environment is

right. I took to an asperger expert here. He worked with Dr.

Volkmar (sp) at Yale. Dr. V is one of the leading asperger

researchers. What the doctor here said is that kids with Asperger

Syndrome will often develop comorbid conditions that show up during

signs of stress but will go away when the environment is changed to

accomodate the child and reduce the stress. When the doc here said

that I told him about something that happened with once.

When was in 3rd grade suddenly started screaming in math

class and said a man was hanging from the ceiling saying he was going

to hurt 's sister. We had a few people tell us this sounded like

a psychotic episode. We were also told the best way to find out if

it was a psychotic episode was to give antipsychotic meds to see

if they'd go away. Well, this episode only happened once. The

special ed teacher decided maybe they'd switched him to the regular

classroom for math a bit too soon. He had been doing math in

the " centralized social skills classroom " with a lot more 1:1

attention until a couple of weeks prior to the screaming incident.

So was put back into the centralized room for math and he never

had another incident like that at school. He had one or two similar

incidents within about 6 months of that and always during times of

great stress. Then the next year after had matured more and had

learned new coping skills he never had another " psychotic episode. "

According to the doc here, this was a perfect example of a kind of

transient co-morbidity. So kids with AS can develop ODD, or Mood

Swings or Anxiety or depression or psychotic behavior due to an

environment that is too stressful and once the environment is fixed

the comorbid thing will go away. It was a relief to know that.

is in a fantastic school and has no signs of psychosis,

depression or ODD now.

Asperger Syndrome doesn't just go away, but it does change and it

does improve. They get more coping skills. Having parents who are

as intensely involved in getting our kids help as we are seems to be

a key factor in asperger kids' ability to cope later. In my opinion

it isn't necessarily WHAT we do, but the fact that we do it at all,

that makes the difference.

I've had 9 years to come to terms with this diagnosis but it didn't

take that long. My son knows about his asperger syndrome and here is

what we said to tell him and it is also what we think about when

we're really anxious. Asperger kids are like everyone else in that

they have some thing at which they are VERY good and some things at

which they are not so good. Your asperger kid might be very good at

math or art or music. Other kids might be better at reading or

social skills. Some people wear glasses while others don't. Some

are good with computers while other people aren't. Some people are

great at social skills and some people aren't. We need all sorts of

people so it is okay for us to all have different talents and

challenges. We can't all be great at everything but we can all be

good at something.

Feel free to email me. I will give you a quote from Dr. Who that I

really like. " If you are bleeding, look for a man with scars. " I

used to be the one who was bleeding. Now I am the one with scars. I

have survived. Maybe I can help you survive too. Anyway, I always

think of that when I talk to people in support groups.

Miriam

>

> I've been lurking here for quite a long time, and I guess it's time

I became

> a little more active. My soon-to-be 9 year old son was diagnosed

with

> ADHD/ODD about 2 years ago. I've been suspecting for quite awhile

that there was

> more to it than " just " ADHD and based upon what I had heard and

read thought

> he might have Asperger's. Well, tonight our BSC brought over the

report from

> his most recent appointment with his psychologist, and the ADHD

diagnosis

> has been changed to Asperger's -- still with the ODD. I'm having

so many mixed

> emotions right now. I thought I'd actually be relieved when this

day came

> because I had suspected it for so long and wanted him to be

eligible for the

> social groups that he wasn't eligible for with the ADHD diagnosis

because he

> needs them so bad. I'm not feeling very relieved. I'm actually

having a hard

> time now dealing with the fact that my son falls into the autistic

spectrum.

> It's not a horrible thing, I know, but it's just something I

guess my brain

> needs to digest. Then, I'm mad that no one figured this out

sooner. Would

> it have changed anything? I don't know, but maybe. And, I find

myself

> questioning the whole thing. If someone could diagnose him with

ADHD 4 months

> ago, how can he now " suddenly " have Asperger's? I know the

diagnosis is very

> objective, and it's not like there's a " test " to give the correct

answer.

> But, who's to say that in 4 more months they won't say it's

something else?

> Sorry I'm rambling. Guess I'm using this as my therapy right

now. Sorry!

> Anyway, just wanted to say hi since I'll probably be posting a

little more now

> that I " officially " belong here. Thanks for letting me lurk for

the time that

> I have. I've already learned so much from all of you and I'm sure

there's a

> lot more I need to know.

>

> Debi

> **************A Good Credit Score is 700 or Above. See yours in

just 2 easy

> steps!

> (http://pr.atwola.com/promoclk/100126575x1218822736x1201267884/aol?

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>

[Guest guest]

Welcome to our group! One thing I have always said about getting the dx - he is the same boy he was before. Now you have a name for his difficulties. If he can get into social skill groups now, then that's great! Feel free to join in anytime!

RoxannaYou're UniqueJust like everyone else...

( ) The Official Diagnosis

I've been lurking here for quite a long time, and I guess it's time I became a little more active. My soon-to-be 9 year old son was diagnosed with ADHD/ODD about 2 years ago. I've been suspecting for quite awhile that there was more to it than "just" ADHD and based upon what I had heard and read thought he might have Asperger's. Well, tonight our BSC brought over the report from his most recent appointment with his psychologist, and the ADHD diagnosis has been changed to Asperger's -- still with the ODD. I'm having so many mixed emotions right now. I thought I'd actually be relieved when this day came because I had suspected it for so long and wanted him to be eligible for the social groups that he wasn't eligible for with the ADHD diagnosis because he needs them so bad. I'm not feeling very relieved. I'm actually having a hard time now dealing with the fact that my son falls into the autistic spectrum. It's not a horrible thing, I know, but it's just something I guess my brain needs to digest. Then, I'm mad that no one figured this out sooner. Would it have changed anything? I don't know, but maybe. And, I find myself questioning the whole thing. If someone could diagnose him with ADHD 4 months ago, how can he now "suddenly" have Asperger's? I know the diagnosis is very objective, and it's not like there's a "test" to give the correct answer. But, who's to say that in 4 more months they won't say it's something else? Sorry I'm rambling. Guess I'm using this as my therapy right now. Sorry! Anyway, just wanted to say hi since I'll probably be posting a little more now that I "officially" belong here. Thanks for letting me lurk for the time that I have. I've already learned so much from all of you and I'm sure there's a lot more I need to know.

Debi

A Good Credit Score is 700 or Above. See yours in just 2 easy steps!

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