Dear Kid Saturday-May 23, 2009

Dear Kid Saturdays at Cutest Kid Ever

I have to admit, I have not been consistent with writing a letter to my kids every Saturday. I guess I tend to tell them everything! That may not sound good, but I learned early to rely on auditory lessons with my kids than text based lessons. Probably you will read more of these than they will, but who knows? One day they may look back and view this blog, and see what Mom was thinking about at this time. So, here is my Dear Kids Saturday note for May 23, 2009.

Dear Son,

This month has been a bit of a whirlwind. We started off with SATs, signed up for summer employment and now, we are studying the MVA driving manual together. If I didn't realize it before, the last 30 days should really convince me that you are growing up. We are talking about your high school graduation next year. We are discussing going to see your biological dad in Georgia for the summer. We are talking about letting you stay in the house for four days by yourself, while we take your younger brother to his dysautonomia support group conference.

Are we really having these conversations?

I don't want to drag out the pictures, but I remember so many stops along the way during these last 16, soon to be 17 years. I remember you as a little boy; withdrawn but yet so adorable. I remember your grandfather and grandmother holding you and saying a prayer over you like you were the chosen one. Their first grandson that neither one would live to see grow up. How they doted on you for those precious three years they had with you.

I remember the inquisitional first Student Support Meeting when I was told you would never finish high school. I never told you that story until you were in high school. Now, you repeat the story every time you get your report card and remind me how wrong even the best intentioned humans can be. I remember teaching you so many things: the meaning of zero, how to hid your fidgety hands, how to stand still when people talked (though rocking was allowed!), how to shake hands firmly while at least glancing at people's eyes; so many subtle little things that make people not believe me when I say you have autism and a speech and language disorder.

I remember the decisions we have made together, you and I. How you have so sweetly become the "little man" of the house. You have your grandfather's gentle spirit in the lean, tall body of your father. The combination is pure joy to my heart. It is like having the best of both people here with me every day.

I realize driving is scary. I know you aren't sure what you want to do for the rest of your life. I know change is hard for you. Even as we speak of next year and its graduation, college visits and four months stay at the DORS campus, I see the tension in your shoulders.

I am not worried. You have made it this far. Farther than anyone in that little elementary school in suburban Queens, NY thought you would go. I know you will succeed.

Guess what, though? It is okay to be a little afraid of the change. I am, too. We will make it.

Fix Your Child!

I have got to stop doing this.

Starting out as a comment to a friend's journal entries on Trusera, I ended up writing too many characters to fit in the message box. Instead of deleting 258 characters, I decided to turn it into a blog post. This is the second time this has happened. Mostly, I just end up leaving really long responses. But, today, this ended up having a life of it own.

My friend was reading the latest assessment for her son. She was frightened and angry at the same time. She wanted answers. She wanted quick answers. She knew she wouldn't get them, but in her heart, she wanted them just the same. If someone could have walked up and handed her a prescription that would take all the deficits away, she would have taken it and parted with every earthly possession she owned to get it.

She didn't want to hear "nothing can be done." She didn't want to hear about how autism can be a blessing. And, I responded with my own, similar feeling.

Read on.
o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-o-

I would NEVER tell anyone that their child should or shouldn't be "fixed." That is not the right word for what you want to do. You want to help your child succeed. They need intervention. It exists and you want them to have it. There are so many ways to help our children. Therapies, tapes, DVDs, our own behavior and drive, etc.- all this can make a difference.

I realize that some people have severely delayed children, who remain non-verbal, wearing diapers into their middle school years. I realize there is a side to autism that is aggressive, violent and even dangerous. They are in a different place than you or I. Where I am, I can see a tunnel. It is a long one, but it has a faint light at the end of it.

When I was told my son needed a special school and would never graduate high school, I dug my heels in and fought. Every night, over and over again. Fought the delays, the stimming, the inattention, all of it. Through what I now know is called modeling, I shaped his responses. Eventually, we could understand each other. Not always, but enough. Once we could understand each other, then the real work began. Over and over, like a broken record, I explained the world to him. How he should stand; how close he could get to people. If he walked out of a room while someone was talking, how it would appear to the other person. How to hug. How to hug tightly. How to kiss his mother good-night. We even formed a ritual around that. We patted them into our cheeks to make sure they couldn't be wiped off. At 16, I still occasionally catch him doing it.

This Saturday, my son will take his first SAT. I don't expect high grades. I expect him to finish. As I type this, his practice test is printing. We will go over it, line by line. He will take the test again next year, his final year in high school. He is on time and on no meds. He has driving assessments, a 2 week career assessment with assistance. He will go away for 4 months next year to live away from family. He is not on the disability they asked me to file for him 11 years ago.

My 2nd son has speech, language and memory delays. We fight the lack of language skills through picture and video vocabulary, mind-mapping software, practice, practice and more practice. Even though his prognosis is more grim, I forge ahead and fight his brain's deficits. I expect more and each day, we, he and I, somehow get it.

This is my rant today and my advice. Don't ever stop fighting to uncover the abilities your child possesses. Whatever level your child functions, don't just accept and be content. You may end up like me; a tired, but triumphant mother of the best two people I know.