Friday, May 31, 2013

What Numbers Can't Define

Today is Peter's IEP meeting.  It's a non-fun meeting where teachers and therapists try to focus on all the positive gains your special needs child has accomplished while trying to trouble shoot the areas that are "problem areas" and I have to "sit in the truth" of all the ways Peter is in no way, shape, or form even close to other kids his age.

Definitely.not.fun:(

I do have to say that we are blessed to live in the town that we are in because the special education program has always been generous and supportive.  I know lots of people have had to fight long and hard to get their kids the services they need.  Honestly, we have always been given everything we have asked for.  Thank-you, God!  (and that's why we can never move out of our town!)

This year in particular is a 3 year re-evaluation meeting which means that Peter underwent a whole bunch of extra testing...that generated many, many pages of reports for me to read.  Well...skim.  Well..most of them. I'm trying!

It's a tad depressing.  Like the meeting, the reports force me to see my child and his struggles put into numbers on paper.

Is it a surprise?....not at all.

But it still hurts.

When I finished reading the psychological assessment(7 pages and yes, I did read the whole thing!), and the numbers staring at me on the page telling me that my almost 12 year old has cognitive and learning abilities equal to that of a 3 year old in two areas, a 5 yr 10mth old in another area, and a 6 year old in yet another area....it made me take a deep, painful breath and think, "Ok, God, what the hell am I supposed to do with this?"

Since I tend to "numb out" for a while before all my emotions seep through, it gives me a short hiatus to pray and try to figure it all out...hopefully before the crash of emotions!


After I read the report I was sitting on the couch with the beginnings of a headache.  Luke was asleep but Kate had a longer nap today and was walking around playing and being cute.  She found Peter sitting on the floor with his IPad.  Kate loves him....she calls him "Pete".  Kate pokes at him and Pete makes her laugh.  They were playing like this tonight when Peter called out, "I take a picture?"  Which, in Peter speak means he wants me to take a picture...

I got up off the couch to see this....







This was the gift I was given tonight while I wrestled with my thoughts and feelings.

To remind me that my son is more than his academic and intellectual inabilities.......

Peter has a great capacity to love and be loved.

Kate loves him because he is "Pete".....and "Pete" obviously adores his baby sister, too!

When Jay was getting Peter ready for bed tonight, Peter wasn't listening very well.  Jay told him, "Peter you are frustrating me!"

And Peter said, "Why?"

Jay answered, "Because you aren't going to bed!"

I looked at Jay....it was the first time Peter ever asked the question, "Why?"  He has never, ever said it before.

It's amazing how one simple word can mean so much!

So, I am wearing my Alex and Ani 'Hope' bracelet to the meeting to remind me that no matter what is said, God has a plan for Peter and a purpose that is more than a sum of his skills....or numbers on a report.

Why are you cast down, O my soul, and why are you disquieted within me? Hope in God; for I shall again praise him, my help and my God.

Comments (8)

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created on purpose for a purpose. every single person. its part of my mantra.

Michelle you are an amazing mom to peter. He is a fantastic kid. Good luck today.
1 reply · active 617 weeks ago
I think you said it best "God has a plan". <3
1 reply · active 617 weeks ago
This post gave me goosebumps, and a little choked-up feeling inside.
I stopped by from SITS sharefest drawn in by your title (I hate the arbitariness of numbers);
My 10 year old son has been recently diagnosed with mild Aspergers.
Sometimes it can feel incredibly overwhelming, that worry you have for your child.
But these golden moments, they are the gift, right?
Our kids are so precious, with all their baggage, and the numbers don't reflect that.
But these beautiful photos DO.
Love to "Pete". and hugs to you.
thanks for sharing
xxx
1 reply · active 617 weeks ago
It is overwhelming. There's a lot of emotions that are connected to a diagnosis. My advice...look at it as a marathon, not a sprint. There is so much information to sort through and so many resources that it is overwhelming. Finding a path that works best for your son will happen....pray, listen to your gut, and know who the people are that will support you and encourage you! I'm glad my post encouraged you. Living in the moment and holding ontothe blessings are the best parts of life!
hugs to you, too!
I found your blog through Colleen at Martin Family Moments. I am happy in being able to find more mommy blogs who have a child with autism. My daughter was diagnosed as a low functioning autistic last year. She's three years old and has lost all verbal communication. We are just starting out on the frustrating journey. And boy is it frustrating. I love the pictures because despite the numbers given during the IEP for your son, he is socializing, smiling and happy to play with his little sister. To me those are the moments that matter. God Bless.
1 reply · active 616 weeks ago
I'm glad you found me:) I'm sorry about your daughter. It is a frustrating journey. It is a marathon....not a sprint! It's hard to find balance but taking care of yourself and the rest of your family is just as important as taking care of your daughter. Have you done any dietary changes for her? It made a big difference for Peter. He had no speech at all until he was around 3....and even then it was limited. For Peter, doing a gluten free/casein free diet made a big difference in his behavior and his sleep. We also did a lot with a DAN(defeat autism now) Dr. and found out that he had a huge yeast problem that took over a year to correct.

It's been a lot of trial and error and praying to know what we could do to help him! I'd be happy to share more of our journey if you have any questions or just need someone to bounce ideas off of!
God Bless.
Michelle

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