An Open Letter to Parents of Special Needs Children About Attending Conferences

Greetings Fellow Parents,

When my son was born, I am sure I loved him more than most people love their babies and there’s a good reason for that. My first three pregnancies failed during the second trimester. Imagine the elation I experienced when I made it to the delivery room at full term.

It was immediately upon Christian’s birth I discovered a brand new word, surely invented for just me and my son. Christian was born positive for cytomegalovirus. What the hell is that? Well, for starters, it sucks if you develop against it, otherwise it would hit, even an infant like the flu.

Fast forward five years and Christian is enrolled at Pennsylvania School for the Deaf, and I am a volunteer at his school, grasping for any help I can get in communicating with my son in his language—which brings me to the American Society for Deaf Children. As a parent of a qualifying member, our family was eligible to attend the conference.

The enviable task of writing an article about the workshops I recently attended at the ASDC Conference in Florida has fallen to me. I think I should mention that it is impossible to attend a conference and not gain some benefit. I know, because I tried. Florida was the second conference I attended. The first was in Pittsburgh, and I wasn’t feeling well, so I managed to avoid every workshop offered. Yet I still can’t even begin to quantify the benefit of that experience.

The families attending traveled together so there was that benefit, the communal style living and the cafeteria-style meals all encouraged families to spend time getting to know each other and benefit from others with similar life experience. I still attribute my son’s subsequent autism diagnosis directly to my attending an ASDC conference. Because we ate all meals together, other parents had an opportunity to observe my son. Someone asked me, “Is your son autistic?”

“Not that I know of. Why?”

“Oh, I was just curious. My daughter is and she has similar behaviors.”

After four other moms asked me the same thing, I began to wonder if maybe they knew something I didn’t. Apparently they did, because my son Christian is in fact autistic. So of course I was compelled to go to the conference in St. Augustine.

This time I actually made it to a few workshops and would really like to share what I learned with the rest of you all.

The first workshop was entitled Independent Living Skills: Empowering Your Child. It sounded interesting and offered something I thought I could put into practice many years down the road. My son is only eight. Well, I was wrong again. Independent living skills start the minute you realize your child is treating you like a maid and a personal care attendant. I know, my bad, but he is my only child and has multiple special needs, so I figured there is plenty of time for independence later.

In fact, the very small steps Christian has taken toward independence are likely to be the death of me. Whose great idea was independence anyway? He’s a child. I’m not saying I’m pleased he still depends on me for many of the things he did as an infant. Okay, maybe just a little. He’s my baby. If he needs to depend on someone, it’s gonna be me.

What I learned from this workshop is that Christian is ready for independence even if I’m not and even if I need to force it on him. I recommend this workshop for all parents

with children at any stage of development.

The second workshop was called Behavior Strategies for Families. I went to this one because I had no behavior strategy of any kind. Apparently, we all have one. People run their homes in one of three ways. Some have dictatorships, some have democracies and some have a combination of the two. Those in charge of this workshop seemed to feel a combination yields the best long-term results.

I tend to believe my home is a dictatorship and me being a Democrat, I can’t get Christian to relinquish his throne. There’s another vote at the end of the month, maybe this time I’ll win. I’m joking. There’s no vote. However, Christian does seem to wear the pants in my family. I don’t remember actually giving him that power, but I also don’t know how to get it back.

The workshop was well presented and focused on positive reinforcement, as well as carefully explaining yourself to your child to avoid confusion and frustration at misunderstanding. If I want Christian to clean his room, first I need to explain what that means with simple step-by-step instructions. I know it is so much easier to clean his room myself, but somewhere down the road, if Christian ever marries, his wife will be pretty darn angry with me when Christian expects her to take over where I left off. I would also recommend this workshop.

Well, I’ve taken up enough of your time. If anyone has had some similar struggles and has advice, please feel free to write me at lisareneehirsch@comcast.net

Best wishes,

Lisa Hirsch