The Imperfect Community

Jessica · Posted: Wed Jan 24, 2007 6:11 pm Post subject: I think I may have a diagnosis...

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."

She continued with this phrase and encouraged me, addressing me as "a mother with a hyperlexic" child. There was so much information thrown at me, and I've heard so many theories and dx's, I didn't even have the chance to ask what hyperlexia was, then I went home and looked it up.

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

My heart is broken. I don't know what to make of it, but I do know after reading up on it, it's not like the other suggested diagnosis', it fits to a tee. For the first time in the past 4 years, I finally read the symptoms and said yes, that's what he has. It's exactly what he has. Although Graham is much more verbal and understand more than the "average" hyperlexic, the comparisons are right on. I have never been suggested a label that fit so perfectly and now I feel mislead.

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.

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

Jessica -

I don't know much about the background here. While I can't adress hyperlexia per se there are things I can address regarding getting through the crazy the system can be to get what your kid needs.

Was this your first IEP?

I am glad that you feel good about this dx. I know that helps a lot.

Kelly

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

Also, I just reread this and noticed you will likely be seeing a Neuro. Again not having the benefit of the background I assume that this would be your first visit to a Neuro?

We have spent significant time with Neuro's. You are Chi-town right? We took T to see a Neuro there in 2004. You have the benefit in being in a really good area for pediatric neurology. Although our dr dealt specifically with the sort of brain injuries T has I think you should be able to find someone excellent there. We got so much more information from our Neuro than from anywhere else. He gave us the most realistic idea of everything.

I would be curious to know if they will want an MRI. Just glancing at other places real quick didn't seem to indicate the root of hyperlexia. It didn't sound like it would be caused by an injury, but rather just how the brain is?? So I am not sure if they would need an MRI.

Anyhow, my experience with the Neuros while certainly depressing in some ways opened doors for us that changed my child's life. I truly hope the same happens for Graham.

Kelly

MainstreamMom · Posted: Wed Jan 24, 2007 7:54 pm Post subject:

Jessica! I know someone here knows someone with it - Kristy maybe?!?! I specifically remember it being talked about in a post about writing backwards b/c I looked it up and was thinking Jack had some similarities. I know someone here has a child or knows someone well who does.

I'm glad you finally have a diagnosis. I'm sorry nobody ever mentioned it to you before......

Jessica · Posted: Wed Jan 24, 2007 8:40 pm Post subject:

Jessica · Posted: Wed Jan 24, 2007 8:43 pm Post subject:

Scout · Posted: Wed Jan 24, 2007 8:57 pm Post subject:

MM, I think you are remembering me mentioning a friend whose son had been diagnosed with dysgraphia, and actually that friend was Tree/Kelly. I guess that was the first sign that something might be wrong, and we kind of lost touch around that time because that was the last I heard about T's issues until she showed up here just recently.

Jessica, I'm glad you at least have some answers now. From the little bit I've read, it seems like a speech and language pathologist would be your first step rather than a neuro? I can't imagine how difficult this must be for you, but graham is lucky he has such great parents who will advocate for him and get him whatever he needs to reach his full potential.

ExCareerGal · Posted: Wed Jan 24, 2007 10:27 pm Post subject:

Jessica,
The Hyperlexia diagnosis cannot even be made until late 3 or 4 at the earliest since it is a PDD (Pervasive Development Disorder/Autism spectrum disorder) with high reading ability (kids usually cannot read until 4, even if precocious). I agree with Kristy that this is a Speech/Language Pathology issue to some extent. It is considered a neurophysiological disorder too.

The best success with kids who have PDD/Autism/Hyperlexia is ABA (Applied Behavioral Analysis.). If it was my child I would get them working with a trained certified therapist. I have seen amazing language gains in kids with early discrete trial intervention. Let me know if you want to know more but there is tons of info on the net and it sounds like the school he is going to knows what they are doing.

By the way, he is still gifted. You cannot get a diagnosis of hyperlexia without being very advanced with reading, letters, or numbers. Though I hate the term, is is compared to being a savant. So I do not think anyone can discount Graham's gifts with this diagnosis.

I am not sure if I should say this to you since you already know it all, but Graham is the same kid he was prior to the diagnosis. If I recall correctly he reads ridiculously well for his age, but he is a bit socially eccentric and his communication skills are needing work. The truth is, the diagnosis does not change a thing. There are many highly functioning people with those gifts and disorders. There is no reason to think Graham will not be one of them. Life is going to be a bit different for him, but isn't a bit different for us all? He is still your sweet, smart, handsome, challenging boy he always has been, and probably always will be. Meet some of these kids who are grown up. I think you will feel better. They turn into interesting adults!

Janna

Jessica · Posted: Wed Jan 24, 2007 11:15 pm Post subject:

Thanks Janna and Kristy. Graham works with a speech therapist on a regular basis at his school and I really adore her.

Janna, I am just so sad and I can't figure out why. I think I was in denial but when it was so shockingly clear that he was the hyperlexic poster child, it was such a shock. I was hoping, praying that he would be just fine.

He is still wonderful and so dang cute, but there are some challenges. We spoke for a long time today about Grahams ritualistic behavior. It's very stressful for the whole family, but he is a happy, if not spoiled little guy. I just want him to do well. I really thought in my heart that his freakishly high reading level and math aptitude was going to give him an advantage in life. I never thought for one minute it would cause more problems for him, I guess that's what makes me so sad.

ExCareerGal · Posted: Wed Jan 24, 2007 11:33 pm Post subject:

All parents of kids with differences go though several stages when they get a diagnosis. I could tell you what they are and you can learn all about them but it really will not help you since you still will end up going through them. I hate to also say this is not the first or last time you will go through them. I am just telling you this so you know feeling sad is really normal and no reflection on you or Graham, just on some of the possible dreams you had for him (which he still may be able to reach).

By the way- you will also feel anger, frustration, denial, grief, among other feelings. Hang in there dear. I will send you some ABA info when I get a chance but there is tons of stuff online to get you started.

Janna <--going to bed . . .

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

Jessica,
I have never heard of hyperlexia either. I need to look it up and see what it's all about.

I am just so sad and I can't figure out why. I think I was in denial but when it was so shockingly clear that he was the hyperlexic poster child, it was such a shock. I was hoping, praying that he would be just fine.

I obviously don't have the same situation as you but when Jack was getting diagnosed with Celiac Disease I really went through a grieving process of some sort. Logically, I knew it wasn't going to kill him or that it could be lots worse. But emotionally, just the permanent loss of normalcy and also the loss of hope that it was possibly something temporary was hard. And I was forced to move out of the denial stage pretty fast which was hard too.

I would guess that as soon as you do start working with a definite diagnosis for G and then are able to set goals and use strategies that help a child with hyperlexia, you will eventually find some comfort in knowing for sure and not just wondering "what is going on with him?". I am sorry for what you are going through though, it's hard. We all just want our kids to be ok and it seems so unfair when there are problems that we have to constantly deal with. (((hugs)))

Jessica · Posted: Thu Jan 25, 2007 6:45 am Post subject:

Anthromomma · Posted: Thu Jan 25, 2007 10:08 am Post subject:

Jessica, I'm glad to hear that you finally have a diagnosis. I can't say that I understand from a parent's perspective, but ASD is pervasive throughout my family, so I can relate a bit. ABA has worked wonders for my eldest nephew (who has Asperger's). At almost twelve, he's just a smart, quirky kid-- Asperger's is part of who he is, but it's not front and center anymore, if that makes any sense.

supergirl · Posted: Thu Jan 25, 2007 11:38 am Post subject:

I'm glad you got a diagnosis. Hopefully, that will help you to move forward in his best interests. Although an official diagnosis brings closure to the search for info, it's totally normal to feel sad or shocked or whatever. Nobody wants their child to have problems or face obstacles in life. Although totally NOT the same (don't want to trivialize your diagnosis), I felt the same exact way when Hunter was officially diagnosed with ADHD. I was so upset that he'd have to take meds to get through school like "normal" kids. I would also get very hurt whenever someone would say something to me about ADHD or medication or whatnot (as people tend to have strong opinions about that subject). It's still kind of a sore subject, but when I see how much things have improved since the diagnosis and meds, I am reassured that I made the right decision for him. That's all we can do as parents....try to make the best of the cards that we've been dealt.

Petulant Pixie · Posted: Thu Jan 25, 2007 12:43 pm Post subject:

I don't have anything really to add, other than you know that having the actual diagnosis will be helpful. Others have said really good things on this thread and my mind isn't working very eloquently today--but I didn't want to not respond either. We're here for you, and there are some really knowledgable people on this thread!