The Imperfect Community

DietCokeHead · Queen of Imperfection Joined: 29 Apr 2002 Posts: 3805

Not to hijack this thread- but Kenna I am so glad to hear that he has done well on the medication! I know what you mean about people bashing your decision to medicate him. People need to do what works for their kids and shutthefuckup about other people choosing differently.

Princesso · Posted: Thu Jan 25, 2007 11:14 pm Post subject:

Avery was diagnosed last year of being "somewhere" on the autism spectrum and it is hard to hear. I think until you get a diagnosis, you always have that hope in the back of your head that all they need is a bit more time and everything will come together. Avery has made a lot of progress and we have determined we will help him in any way to be the best "Avery" he can be. The more we have expected of him, the more he has delivered. Knowing what his challenges are has actually helped us to help him learn to cope better with the world around him. It still hurts, you know. Noone has a child and hopes that they will face a lifetime of challenges. Like someone said though, Graham is still Graham and all the labels in the world don't change that. All the label will do is help determine the best approach to helping him be the best Graham he can be.

TreeMom · Slightly Flawed Joined: 09 Jan 2007 Posts: 109

Wow. So much of what was said here echoed my own feelings. We came into T's diagnosis a bit differently because I was clueless in my imperfect way that there was anything wrong. When my son was 4 we were approached about holding him back because he was struggling with fine and gross motor skills. I balked because he seemed so above average. I decided I didn't want to hold him back without meeting with our dr. That was when we got the dysgraphia. I did and she referred us to a center here for testing. He did that and was diagnosed with finger and toe agnosia. We were referred for an MRI.

I refer to the day of the MRI and the follow up with our neuro as the day a curtain sort of ripped in our world and we had the before and the after. What they saw on the MRI was pretty amazingly bad lesions. Similar to what a serious stroke victim would have. I cried and cried and cried and cried just a tad bit more. I got pissed and angry and just felt so overwhelmed.

But now over two years later it is just this thing that is there. He has seizures now. We deal with those. We know about his brain. But I wouldn't and won't let him define him. I don't really know how much he understands about it at this point because we never have sat down and talked to him about it. I know that day is quickly approaching and we will. But what I hope for him is it is just this thing not who he is.

I remember thought I had once I got over that very emotional beginning. That thought was that all I wanted to do was try and provide T a life in which as an adult he would say, yeah I have this thing with my brain and I remember some stuff when I was little but it just isn't that big of a deal.

I feel good about where we are now.

I like you Jessica look back on T with the knowledge that I have now I can clearly see the "different" things he did that fit within his diagnosis. But I find a lot of comfort in it too, because I felt like I could give him the tools to work with to get him to be where he needs to be.

A book I read actually before the diagnosis helped a lot. It is A Mind At A Time by Dr. Mel Levine. I read it because I saw him on Oprah and liked what he said. That book along with many other books he wrote sort of became my foundation for this insistence that T's mind is the mind he has. We simply need to figure out how to help him use his mind.

I have several copies of it. If you would like one you are welcome to have it. I can send it to you or we can figure out a way if that makes you uncomfortable.
I really hope for the best for you family and Graham. I know how these things can feel at the beginning. Good luck to all of you! And while I am hardly the expert on anything if there is ever anything you might think I can help with let me know.

Kelly

eta took out the link because it was making it wonky and have to get on a conf call and can't do the html at the moment. But you can find it on amazon.

MainstreamMom · Posted: Fri Jan 26, 2007 12:14 pm Post subject:

OOPS

Yes Kristy that is exactly what I was thinking of. Sorry Jess! Somehow I know I *know* someome who has that though....hmmmmmmmm must think more on this.

On a side note (since we are talking about diagnosis), I had J evaluated by a team of specialists b/c we were very worried about his behavior. We have lots of stuff in our family which would cause us to watch very carefully for red flags. Anyway, he had an informal diagnosis of ADHD but with a possible "other" underlying cause.....I was referred to a neurolgist but in the past year, the change in J has been nothing short of remarkable. During the eval, he was also identified as "superior" in some of the IQ tests. I felt they didn't explore this part of his personality enough.

Anyway, Janna, I just wanted to let you know that you have helped me (and others I know through me) more than you will ever know. If you hadn't posted that article about misdiagnosis I NEVER would have guessed. I actually cried reading that article because every single word was speaking to me (about the ADHD mostly). Anyway, your posts are so thoughtful and informative and I just wanted to let you know that I read everything you write and send along to people i know too. I wish you were my neighbor!

sorry to hijack post jess

ExCareerGal · Posted: Fri Jan 26, 2007 10:18 pm Post subject:

[quote="MainstreamMom"]Anyway, Janna, I just wanted to let you know that you have helped me (and others I know through me) more than you will ever know. If you hadn't posted that article about misdiagnosis I NEVER would have guessed. I actually cried reading that article because every single word was speaking to me (about the ADHD mostly). Anyway, your posts are so thoughtful and informative and I just wanted to let you know that I read everything you write and send along to people i know too. I wish you were my neighbor![/quote]

Wow MM. You made me cry. Thanks. Even though I have spent 30 years working with exceptional children, teachers and families, and I have been blessed with many of them kindly letting me know that I was helpful, it still is very nice to know when I make positive contributions. As far as I am concerned I am your neighbor (virtually anyhow). I hope all of you feel you can ask me questions about your kids. I may not know the answer but I will always try to help.

On a scary note, I am bringing Jessie in for an MRI on Monday. She has had headaches on and off for years but now she is having some auditory hallucinations (hearing voices). I am trying not to be freaked out. There is a good chance it is just childhood migraines. I cannot even think about what else it may be.

Janna

Jessica · Posted: Sat Jan 27, 2007 3:16 pm Post subject:

honeybee · Queen of Imperfection Joined: 20 Dec 2002 Posts: 3163

I'm sorry Jessica. Sad

We have started on the road to figuring out what is wrong with Owen. He had his first big screening several weeks ago and yesterday we got a letter in the mail to say that he is being referred for more evaluations in his deficient areas:
Speech/Language
Cognitive
Social/Emotional
Adaptive/Self-Help

Crying or Very sad

I knew to expect it. It came as no surprise. But to see it in writing is very hard. I keep mourning my little boy and go through bouts of being completely overwhelmed to totally numb.

Huge hugs to you.

Anthromomma · Posted: Sun Jan 28, 2007 11:38 am Post subject:

ECG and Honeybee, I hope you both get some answers soon.

kathyjm · Posted: Wed Feb 28, 2007 12:21 pm Post subject:

Hi Jessica:

I have not been on here in a LOOOOONG time! But I saw this and couldn't help responding.

I hope you are getting all the support YOU need! Even though time has flown by in the last five years for us, all those feelings you are going through are still so fresh for me and I often go through waves of them to this day.

When we have children with special needs, sometimes we get into overdrive to take care of them and forget about ourselves (i personally went through a lot of guilt as irrational as it was and doing things for myself to feel better felt selfish to me).

While you need to always be your childs advocate (you'll learn that everyone has their own theory or opinion and they're all different) in this day an age there is so much support out there. You just have to seek it out and dont be afraid to speak up when you feel one of the doctors or specialists just isnt right. Trust your gut. Just as when your boys were infants, you need to listen to your mommy intuition.

I couldn't find a hug smiley, so here's the old fashioned way... {{{HUG}}}

ExCareerGal · Posted: Wed Feb 28, 2007 12:49 pm Post subject:

Nice to see you on again Kathy-

I forgot to tell you al lthe MRI came back fine for Jessie. We still do not know what is causing the headaches but luckily it is not a brain tumor.

Janna

TreeMom · Slightly Flawed Joined: 09 Jan 2007 Posts: 109

I am so glad to hear that Janna!

Kelly

chrisd

[quote="Jessica"]No Einstein Academy for Graham. Crying or Very sad

His IEP was today. I feel betrayed by his teacher and don't think that she was being entirely straight with me.

The Director of the school, who was present (and has 100 degrees under her belt) listened to all the therapists and his teacher, squinted her eyes and said, "So, what you're telling me is that Graham has Hyperlexia."

The director told me to tell our pediatrician that he is hyperlexic and to suggest a neurologist.

Does anybody know anything about hyperlexia? We are now going to proceed accordingly and now take this information to the doctors, for the first time, I have something to go on. It was such a reality check when I started reading about it.[/quote]

Yes, I know something about it.

I was watching 20/20 about 6 years ago and thought, "Wow, my son has that." He's 10yo now.

I think it's a good place to start w/your pediatrician. However, your dr may not even know what it is because it is not that common a thing. A neurologist will know but I'm not sure what a neurologist will do to help you. My suggestion would be to make an appointment and talk to a nurse FIRST.

I understand that you just got sideswiped with a mountain of information and are feeling overwhelmed. You should be, because it is overwhelming.

Our first IEP was the worst (in Kindergarten); we followed their suggestions and it has paid off in a big way. If your insurance will cover it, I suggest that you take your child to a neuropsychologist. If you have the $ and the insurance, that's the way to go. We had neither, but ds is very high functioning.

I just looked at the thread. My son ALSO has migraines; had an overnight EEG done, MRI (waste of time and money), blood work. He's on "the diet" wheat free/gluten free/dairy free, which seems to somewhat help. Kinda. sorta. I don't know...

Don't rule out the Gifted Program. My son just this year started it not because of grades but because of his maturity level (still behind but good enough).

You guys are doing a tremendous job with your children. I had no idea and no support when I first found out. I do now, but it was a lonely road for a long time.

ps I wrote an article about it right here at Imperfect Parent Wink

Jessica · Posted: Sun Mar 04, 2007 8:46 pm Post subject:

Kathy and ChrisD, thank you so much for your insight and support. I really want to address both of you, but I have crazy busy, but I have read both posts and am extremely grateful for willingness to share your experiences.

Please know that I am very interested in what both of you had to say, I have been preoccupied with another semi-crisis (not child related for once!), so I have been slightly absent. I will get to it this week though!

chrisd · Posted: Sat Mar 10, 2007 8:44 am Post subject:

[quote="Jessica"]
Please know that I am very interested in what both of you had to say, I have been preoccupied with another semi-crisis (not child related for once!), so I have been slightly absent. I will get to it this week though![/quote]

Smile

I'll be scarce myself (it's been several days since you posted), but I'll be checking a couple times this week.

The important thing, which I think everyone can agree with, is that you are NOT alone.

Jessica · Posted: Fri Mar 16, 2007 6:08 am Post subject:

Okay, big update...I took Graham to the University of Chicago and we met with the Chief Professor of Behavioral Pediatrics who was...OH. MY. GOD. HILARIOUS!!! He was so eccentric, we spent about 3 hours with him testing Graham and it was fascinating and entertaining. He went out like an absent-minded Professor, with this old, 1920's doctor bag full of tricks, that he kept throwing things out and over his shoulder. When he finally wrote up the report, I was reading it, along with my step-mother who went with me, and the doctor was reciting it while we were reading silently. He had mesmerized the whole thing. He also has Asperger Syndrome. He said many the of physicians in his department have it.

So, Graham was tested for 3 hours. A lot of intelligence tests were administered, which were fascinating to watch and see Graham's deductive reasoning skills. He also did some coordination tests, muscle strength etc.

He finally gave us a diagnosis of Asperger with Hyperlexia with an emphasis on social immaturity.
The doc said we had to word it that way to get the best curriculum set up for him. He said that he's going to be our school district's worst nightmare. LOL! And, he confirmed my reservations about the group level Graham is at at his preschool. He said that Graham needs a little budge and that he cannot be the model for kids with the comprehension of two year olds. He said that is doing him a great disservice. So, he put us in touch with an organization that writes curriculums for children with autism and acts as the legal and academic counsel for him. Chris, maybe you know who they are? Friends of Autism or something like that?

Anyway, I walked out of there totally empowered and proud of Graham. It was such a different experience from that of his IEP. I still love his school, but now I feel like I'm not following their advice blindly, but rather I do and will have valuable input and if I disagree, I will feel confident with it (unlike before).

Chris, I know your article silly! The first few paragraphs made me very emotional. I continue to relate to it. I feel like we're very lucky though, so have children on the ASD and that they're doing so well and so much to offer.