“I needed this for him…and for me…”

Sometimes a piece is so authentic that its truth overpowers you. Like this one, written by the mother of a severely autistic child:

But as this year wound down, I added a seemingly tricky expectation/goal to my list for Lil D – that he should walk across the stage for his fifth grade graduation. It morphed from something I would speak of with a longing in my voice to something I discussed with more and more determination in the multitude of meetings we had with his school team these past several months, meetings in which we discussed his middle school transition, how to handle his self-injurious behaviors, and ultimately what was best for him.

To see him walk on stage in a gymnasium full of students and parents, and accept his medal from his principal – it became something I couldn’t let go. We had let so many things go with Lil D these past several months, and so many things that he had accomplished in a public school were slipping away – this was something I needed him to do.

Then last week, at Lil D’s final elementary school IEP (Individualized Education Plan) meeting, after we had signed off on his future for next year, his teacher turned to me and gently said, “Mrs. Ali, about graduation …” She didn’t think he could manage entering the gymnasium full of people and walk across the stage, given his completely unpredictable behaviors and bouts of flopping, meltdowns, and SiBs.

My face dropped. Being the compassionate, loving teacher that she is, she and my husband quickly devised a tentative plan for him to escort Lil D to the stage, IF Lil D willingly walked from his classroom to the gymnasium, and then into the gymnasium. It was a big if, given the current situation we were living with.
Yes, sometimes I am selfish. Nearly everything I want for Lil D, everything I force him to learn and teach him to do is for his benefit. If he accomplishes something, then his success is my success. His happiness makes my happiness. But, this graduation, well it was for me. As I wrote in my post a few months back about the attempting to include Lil D in a winter concert, seeing him onstage was my need to see him partake in one of those rites of passage that “normal” kids have.

We all knew it was a long shot, but I still thought about it incessantly and prayed over it. Please God, please. Please. Please. Let him do it for me. Please. Please. Please.

Grab a kleenex before you read the rest

About Elizabeth Scalia
  • pianogirl88

    Beautiful ~ just what I needed to read today!

  • retriever

    I could relate, as the mother of a kid with autism. I remember how frantically I tried to find a way that he could be part of church and Sunday school, so that he would grow up knowing that he is part of the family of God,and not just our small nuclear family. We have been blessed by a good school system, doctors and people who have worked to help him (he is high functioning/Asperger’s, adult age now, but things were VERY difficult in the early years). My evangelical (interdenominational) Bible study group had a good religious education for the little ones when he was two to four and I remember him laughing and singing “I DON’T want to be a sheeep, Ba-ba-ba-ba!” while the other little lambs sang the right words. But he did grow up knowing that God loved him,and church loved him, and people there wanted to see him and expected him to behave well, learn about God,and learn how to help other people there. The moment when I realized that all the struggles to pour him into clean clothes on Sunday, and badger about appropriate behavior, etc had all been worth it was when he came back from school (middle school) and sheepishly admitted that “Mom, I got into a bit of an altercation today.” “Was it physical?” “No. But the jerk was saying that God didn’t exist and that only a RETARD (such language is loosely tossed around,ironically, in Special Ed classes, as a term of abuse by some kids) would believe in him.” “What did you do in response?” ” I told him that God had healed me, and that I was proof that He existed….that I used to be complely out of control but that now I know He loves me and has plans for me and for everyone…” (I gather that things deteriorated from there into something of a Crusader verbal brawl with the words infidel and burn in hell being rather loosely tossed at the offending atheist, but nobody’s perfect)