We had Ryan's IEP meeting, his Triennial. This time, he had Many, Many more tests, including an DAS (an I.Q. type test) and a battery of physical, emotional and scholastic testing.
When I sat down for the meeting, I was surprised at the number of people there. Luckily, I brought our private SLP, who is a Director of one of a hospital therapy groups; she has gone back into private practice one half day a week to sharpen her skills. Ryan is her only patient. We grabbed all of her available time, at the urging of our former SLP.
The 4 main therapists and the school director did the talking at first. They hit on Ryan's strong points, which are many. During a pause in the conversation, I quipped "WoW! You guys are saying so many great things, but I have a feeling you're leading up to some big whammy.... ?"
With that, the school psychiatrist stood up. She went over the basis for the test, stating the range of errors, the fact that Ryan was three DAYS over 66 months so they had to use the 66-71 month age group for all his testing, which meant he was being compared to children much older than he actually is. She handed me Ryan's IQ test, and handed out 2 copies for the other groups to share. One of the therapists said "OH MY GOD!" I yelled "WHAT?! WHAT?!"
My little Ryan scored 138 on the nonverbal portion of the test.
My little Ryan scored 53 on the verbal portion of the test.
The school has never seen that wide a split in the 2 areas of testing.
Having a difference of TWENTY POINTS means a child has a learning disability.
Ryan has a split of 85 points.
The therapists quickly grouped together and talked. They quickly agreed, based on the results of weeks of testing, that he is hard wired for the DAS results. ie - he's not going to suddenly start talking like his peer group, even though he can read and write circles around them now. He is ephasic in alot of output. Which means, he was either oxygen deprived in utero or at birth; suffered a stroke at some point, or he was put together a bit wrong when his brain halves joined. Would an MRI point it out? Probably. So, we'll do a neural psych test and an MRI when he's nearer to 7.
The school district has no idea how they are going to teach him. He is going to suffer huge consequences as he's putting language together incorrectly - from his extreme visual acuity, not from phonemic awareness and correct building blocks. I am now researching like mad to figure out which school can best meet his needs. Or do I just figure out what learning method is best from him and hire tutors to teach him? I don't know.
I new there was a reason he was unlabelable in his learning disabilities. I just had no idea how huge it was.
When the boys are in bed, I have cried rivers. Not that I am sorry for myself - but for my beautiful, loving, smart son! What a cross he has to bear. At times like this, I question what kind of God would strike such a gentle spirit with such a mean blow.
And I am telling NO ONE here about Ryan's difficulties. He is what he is. I don't want parents alluding to the RainMan in our midst. We will just get him all the best help we can.
The most touching thing is how the Therapist Alert system went into overdrive. Every therapist we've ever known has called and come over to smooch Ryan and pat my hand. And tell me "Oh, He's going to be FINE! You just watch our Ryan go!" Which makes me sob tears of gratefulness, but the layer of fear on my soul is huge. I am never afraid, of anything. I have faced the Devil and won.
But this? This is our most difficult journey yet.
Please think good thoughts for Ryan. And maybe keep a teeny slice of your heart positive for him. He is so good, so kind, so very dear.
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13 comments:
The kind of God who would be sure to give him you as a mom.
It will be hard but you are fierce and unconditional in your love and that my dear will make all the difference in the world. And yes, you are wise to keep it to yourself. One of my sons is considered a genius and the expectation heaped on him as a child by teachers and friends and the like nearly paralized him.
You and your beautiful boys both will be in my prayers.
I agree with Paula that your love will make all the difference in the world. You are THE most determined Mom I have ever seen on overcoming the hurdles that our special children face.
There have been so many times with my guy that I have been devastated to hear something or learn something about him. And then he starts gaining more skills and I feel like we're doing well.
Then we get more news that puts me in a slump. And then we start coasting along again.
Right now you are at the bottom of the mountain news-wise but I know you will climb back up.
Then you might slide down a little and climb again.
It really is like a roller coaster ride isn't it?
And yet, other than the obstacles they will have to face, there's not much we would change about them. I know in my heart that you will find a way around this too.
Oh sweetie, I know it must be such a big shock for you. I'm sure Ryan will be OK with a fantastic mum like you, and those therapists don't sound like a bad bunch either! I have no idea about any of this testing, but would it help if they tested him for the lower range age group? Maybe there wouldn't be such a difference between the two scores? Or does that not matter any more? You will all definitely be in my prayers too.
Loretta xxxx
Your fight will be a tough one -
but the fight, coupled with his gentle, wonderful spirit will be the forces that join to help him succeed.
And in the meantime I will hold you in my heart and prayers.
Ryan is the luckiest boy. He has you for his mum, he has a great father and a fantastic brother.
None of us measures up to what the world thinks is enough. We just learn to cover it up, and if we're lucky, we make the most of our strengths. You'll find a way to show Ryan the way and you'll all help him uncover his strengths. I send you lots of love and hugs, just for you.
Just one word of advice: Get rid of the therapist who panicked. Keep calm, positive spirits around him.
I'm glad the post stayed up for more than one day or I would have missed it.
There is a bloody good reason you are Ryan's mum. Because he needs you to help him along this path. As you need him for your life path. You and your brilliant sons will shine.
I am holding you in my heart and thoughts right now, dear friend.
Hugs hugs hugs. You are a fierce mama, like Paula said...
You are most definately in my thoughts and prayers.
And it's okay to cry--it's like all your dreams of "normal" just got tossed away.
I know I have cried those tears for myself. They seem like selfish tears, but you have to grieve before you can move on to the "new reality." And you will. But for now, it is okay to lean on people. If you're not telling anyone in your land of snow, I'm grateful and honored that you would tell us.
more hugs hugs hugs...
Oh V, I am thinking of you and your beautiful Ryan. You will both soar above it all!
Oh, V, giant hugs and love to you as you start what looks like a very tough road - lucky you have Ryan by your side - the two of you can figure anything out!
What changed that he's having all the testing now? Is it his age?
Oh dear. This is awfully hard on parents. I'll be thinking about you. I think you are very, very wise not to tell a lot of people about this, if for no other reason that they are bound to say stupid shit that will get on your nerves.
I am glad the therapists have been helpful, and I too think you are wise to keep it quiet. Let me know if you want me to do any research (sometimes it's nice to be friends with a ref librarian : ))
Thinking of you and Ryan
I have NO IDEA how I managed to miss this post when it went up. I am so sorry. I know well that feeling of how unfair it is that such an amazing, sweet kid can have so many struggles.
I am sending good thoughts to you and Ryan. I have a VERY good feeling that he is going to be VERY okay. And I am psychic about this sort of thing.
The problem with having blogging blackouts is that you can miss moments like this.
Glad to read (later on) that the news has settled in and calm returned.
Have you also re-jigged your banner subtitle or had I just forgotten how funny it was? Because I nearly drank my coffee through my nose when I read it justnow...
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