Finding Courage Through Sharing

OK, so this month Michelle's theme is this: This month, write a post to share something that you wish other people understood about your life with a child or children facing medical challenges. If you haven't gone to In the Life of a Child to read the other posts yet, MAKE HASTE!!!! (as soon as you finish mine ;-)

As Michelle indicates in her post, this isn't an easy subject. I could write a book on it some days, but really, how do you tell people what you wish they knew about your life as a special needs parent?

There are a few biggies for me. The sum total of which is: let me take the lead.

What does that mean? To me it means that most of the time, I want to talk about my kids and their needs, I want you to ask questions, I want you to make comments, I want you to be interested, but pay attention, I may need you to stop if I start crying, which sometimes I do.

When the tears start and I begin looking foolish in public, please throw me a bone and mention the weather, the NBA playoffs, U of M's new coach, anything that will not provoke more tears. But short of me looking foolish in public, please talk to me about my kids. They are a huge portion of what makes me me. If you care about me, care enough to ask about them.

But whatever you do, don't make me out to be a hero. I have done only what God has planned for my life, no more, no less. I only answer to God, he gave me the ability to raise these kiddos, and many times I fall on my face, but it's God who gets me back up. It's upon Jesus that I lean when I'm weak, and the Holy Spirit that gives me anything I have in me to do my job well, just as he does all who ask. Doing what God requires of me and depending on Him to complete the job doesn't make me different or special, it makes me a Christian. I hope and pray that I receive a gleeful "Well done my good and faithful servant" upon the day of judgment, no more, no less.

Parenting for me requires a fair amount of work, I dare say more than average, but as with everyone else, I am just trying to make it through the day with my hair still attached, and on a good day, maybe even looking halfway decent.

The IEP

So 2 days after the Psych eval went home, the IEP/MET took place. I am delighted to say that these wonderful people working with my son see him the way I do. We discussed at length his strengths, his potential, his value. They get it. This was the most empowering and validating IEP I have ever had the privilege of attending. Praise our Great God for creating people like the ones who work with my son.

The Bell Curve

Bert had his first full psych eval done at school. This is done primarily to assess the IQ, and assist in determining placement. This is a quick explanation of the IQ bell curve. See the very bottom of the curve? That lowest percentile of people? That little tip of the bell that is <60? That is Bert. He's down in that teensy bit of bell.

I am not a delusional person. I have a pretty good grasp on the daily living and cognitive skills of my son, and I know that he functions still about at the level of a 2 year old, more or less. He turned six last week, so I have been parenting the same growing child, now 50 lbs as a 2 year old for about 4 years. We have effectively ruled out the autism aspect as instead severe Sensory Processing Disorder coupled with a very low IQ and ADHD. Honestly, I'm not convinced that the ADHD is accurate. C'mon, what kind of attention span do you expect a 2 year old with SPD to have?

Alas, it is difficult to read a report in which your child's intelligence is graphed and documented in formal language by a licensed psychologist that states your son tested low compared to his same age peers, over and over. It sucks to see a number that has been referred to as "trainably mentally impaired" or "severely mentally impaired". Though I did not relish reading it, it was like reading a story that I'd heard over and over again in spoken word. The document was newly drafted, but it was not unexpected. I was pleased with myself that I handled it as the information that it was, no big emotional breakdown required. Yet still, I can't seem to get my mind to let go of the graph of my son's IQ.