Sunday, April 28, 2013

Autism Awareness Month 4/28 - Cindy - Friend

I'm very proud of today's post. 

Let me tell you a tiny bit of back story of how I know Cindy. Jack was in a full-inclusion general Ed Kindergarten last year. On the 2nd or 3rd week of school, I had noticed a sweet little girl in Jack's class had really made the extra effort to engage Jack... better yet, I had noticed that her Dad picked her up in the afternoons... and he wore Pink Floyd T-Shirts. So, one day, I mustered up the courage to approach a stranger and said "Excuse me, you're Emily's Dad, right? I just wanted to say that my boy, Jack, is in her class and has autism. Emily is just the best typical peer model I've ever seen. You should be very proud of her" 

As soon as I said it, I realized how goofy it sounded. Instead, I just got a smile and "Oh. I'm not surprised. Emily's older sister has Down Syndrome".

And Mike and I (and his family) have been best friends ever since.

Cindy is Mike's wife. She asked if she could write a post about her relationship with Autism as a parent of Down Syndrome. I couldn't have asked for a better idea.

A 2010 poll reported that 15% of Children with Down Syndrome were also autistic.

A 2011 poll reported that 20% of Children with Down Syndrome were also autistic.

A 2012 poll reported that 25% of Children with Down Syndrome were also autistic.

Whichever number is correct... our communities are clearly combining. 

What does that mean for schools? What does that mean for services? What does that mean for inclusion?

Ladies and Gentlemen, I proudly present my friend and fellow mom, Cindy...

I don’t have a child with autism. My daughter was born with Down syndrome, but I too, have a relationship with autism. Like with all close relationships, my feelings about autism are complex. Thorny, even.

It probably began the day we dropped my daughter off at her pre-school class. She was only 3, and a beneficiary of an early intervention program. The teacher that morning had her arms around one of the students, restraining him. There was a pained but resigned look on her face as the kid thrashed and screamed. The teacher was going to be like that for a while. Meanwhile, her aide was running around getting ready for the class, and here we were, dropping off our child, our baby, into their care, into that environment. What was I to do? Just leave her and go? Did the adults in the class even know she was there?

We had our own issues at that time. We were working on attachment issues, and we were supposed to give her a cheerful goodbye, and just go. She needed to get used to the going-to-school routine. And so I left her. With a screamer and two adults who were not paying any attention to her.

Over the years, she picked up many things from her autistic classmates. Thankfully, the head banging only lasted one time (she got angry, banged her head against the wall, paused, then rubbed her head going “ouch“). Most annoying was that my verbal child regressed to grunting and pointing for things she wanted. We were able to nip that in the bud fairly quickly, but the spinning / stemming has not stopped to this day.

Over time we have come to find that Special Education is dominated by autism. All of the teachers and therapists can speak with knowledge and experience about educational methods that work, only to be met with blank looks when I brought up that children with Down syndrome are good mimics and will try to beguile you out of doing schoolwork. They hadn’t read that literature, apparently. You see, my daughter was the only child with Down syndrome in the class. Perhaps, the first child with Down syndrome those just starting out in their careers had ever taught. Autism, on the other hand . . . They had lots of experience with that.

On the flip side, our family has been enriched by knowing people who have been touched by autism. Our second daughter was in Jack’s kindergarten class and she thinks he is the most interesting boy she knows. She gets all excited when goes over to Jack's house, and she doesn’t want to leave. This is not an exaggeration. She cries like a little part of herself is breaking when she has to leave their house.

I can’t help but believe that parents of autistic kids are just better at the whole special-needs-parenting thing than I am. They are better connected, better at navigating health care systems, and know every educator and therapist in town. On the whole, they are just better people than average. They are funnier, watch cooler shows on TV, and generally seem to enjoy life more than I do.

I don’t have a child with autism. My daughter was born with Down syndrome, but I too, have a relationship with autism. Like with all close relationships, my feelings about autism are complex…


  1. Dear Cindy,

    You do not have a "close relationship with autism." If you did you would not be mad at the autistic child that "thrashed and screamed" when you were dropping off your daughter. You would have felt some empathy for a child- A CHILD- that was having such a rough time. You wouldn't have called him a "screamer."

    What about his mom? Do you know what it's like to drop an autistic kid off at school? I used to wait in the hall and sob as I listened to my own son thrash and cry. Transitions are hard children with ASD.

    Spinning and STIMMING are also commonalities across both autism and Down syndrome. Your daughter would have probably done those things anyways. That's not the autistic kids fault. It's a coping mechanism.

    Autism effects 1 in every 54 people. Down syndrome is about 1 in 1,000 (both numbers according to the CDC). So of course there are going to be many more kids int he special education setting than Down syndrome kids.

    You're acting like a total victim here. Your poor daughter sent to a classroom of screaming and thrashing kids that taught her horrible behaviors. You know what? She didn't HAVE to be in that class. You could have pushed to get her mainstreamed, you could have used the IEP process to show the consequences of her being in that class. Don't blame the autistic kids who have no fault in this. You are your daughter's biggest advocate. You could have got her moved.

    What if someone had said, "I don't want my autistic child in a classroom with a child with Down syndrome. They don't learn as fast as my child." ? You did the same thing here. Autism is fairly new, too. There are MANY teachers that aren't as educated on it as is necessary.

    The second to last paragraph seriously was so "Woe is me" I couldn't handle it. Do you not take any responsibility for your actions? Can you NOT get involved with the Down syndrome community? And you can't lump parents into boxes based on their children. I know wonderful parents of kids with Down syndrome, and I know wonderful parents of kids with autism. Each parent is different.

    I tell you these things because I am a mother of a child with autism. I also tell you these things as mother of a child with Down syndrome. I have one of both. And you do not, in any way shape or form speak for me or any of the other mothers I know. I would hope that having a child with special needs would make you more empathetic to other kids with special needs. It clearly has not.

    1. Lexi, I have to say that I found your answer to this post very unfair and I suspect you didn't read it in the spirit it was intended.

      At no point did she express any anger at the child who was screaming. She was questioning how her child would respond to it. Concern for her own child's well-being doesn't mean she felt nothing for the child that was having a hard time. Remember, she was dropping her child off at school for the first time ever. It is a highly emotional time even without special needs thrown in the mix. It is unfair to expect stoic saintliness at such a time.

      This post is about the early educational experiences of this mother. We don't know how old her child with Ds is now. I suspect there were a lot of tears coming from this mother, too, and her's are just as legitimate as yours.

      The words "Stemming" and "Stimming" are used interchangeably in special needs literature. This particular nitpick was especially unfair on your part, but it is also unfair of you to speculate on how her daughter would and wouldn't have developed in a different environment.

      You point out that Autism effects 1 in every 54 people. Down syndrome is about 1 >in 1,000. Then you go on to say "So of course there are going to be many more kids in the special education setting than Down syndrome kids." Well done, you got the point of the post. Why is this a problem on her part? She spoke very frankly about the differences in the way kids with autism learn and the way kids with Ds learn and the problems she had had with the schools because of it. I'm not sure why you have such a problem with this.

      She in no was is 'acting the victim' when pointing out her experiences in the education of her child. This is the most unfair attack in your reply. Coming from a family of teachers I can tell you that the instinct is to 'trust the 'professionals' is very strong. They are, after all, experienced and 'must have my child's best interests at heart'. That she trusted the people who are supposed to know what they are doing is no fault of hers. It takes a long time for some people to learn to question 'authority'. And further, how do we know that she DIDN'T use the IEP process to have her child moved? Remember, this is a post about her daughter's early educational experience. What if the girl is fully included now? It may well be she fought the district tooth-and-nail, but didn't want her post to be 20 pages long. You assumed an awful lot in this section.

      She wants her child to be educated properly. She never said word one about not 'wanting' autistic kids around her girl. And as far as the whole "I don't want my child around that kid with Ds" thing? I have heard parents say exactly that, and I bet she has, too.

      I didn't her second-to-last paragraph as 'woe is me' at all. I found it to be a very honest expression of the fears of inadequacy we all have as parents. Have you never had a dark moment when you looked at another set of parents and wished you could be as patient and involved as they? Have you never wondered if you were doing enough for your child? If you haven't, then bully for you, but most of us are human and wonder constantly if we are doing the right thing for our kids.

      In closing, I'd like to point out that the dude who runs this blog is friends with this mother. Do you really think he would include a post by her if she was really the unsympathetic, unfeeling woman you seem to think she is? Did you miss the part where her typicaly functioning daughter is friends with Jack and loves to go to his house and play?

      It's really too bad that you read this post with such a hositle point of view. I would hope that having a child with special needs would make you more empathetic to other parents with special needs kids. It clearly has not.