Two Children, One Spectrum: A Collaboration

This week, I kick off a series in collaboration with Flannery of Living on the Spectrum: The Connor Chronicles.

This is a new series about two children on the autism spectrum. I will be writing about my son, Moe, and Flannery will write about Connor. We will explore similarities and differences in several categories and hope to show people how very different two people with the same label can be, and how important it is for services and supports to be individualized.

Flannery is hosting the series on her blog. Today, we're talking about communication.

I hope you'll check it out.

Communication is Hard

Once, when I was a little kid, my brother, who couldn't have been more than 3 or 4 at the time, needed some new pajamas. It was nighttime, and my dad had to go out and buy them in some kind of pajama emergency. I remember this being in our house but I can't imagine a case where the pajama supply would have been so low that he had to go buy new ones rather than wear ones he already had. I also seem to remember my dad was going to go the local drugstore, Sav-On, to get them, which also now makes no sense to me. I'm sure I have the facts

But the point of the story is that we asked my brother if wanted pajamas with feet or without feet. I remember he was very upset, but he said he wanted ones with feet. So my dad went out and bought pajamas with feet. He came back, and tried to put them on Billy, but was met with some serious unhappiness. It turns out that what he meant by "with feet" was that his own feet would show, rather than the footed pj's we thought he meant. It makes sense when you think about it.

Jelly is almost 21 months old, overachieving at everything including her early entrance into the terrible 2's. I'm not into foursquare, but if I were I would be the mayor of tantrum city. (If you don't know what foursquare is, it isn't important. You get the idea. She throws a fit about 100 times a day.) Jelly talks a lot, and is remarkable and making her needs known, but sometimes I know I'm talking right past her. She will often mix up things like off and on, telling me to turn off something when she really means that it is on, or whatever. It's a completely age-appropriate thing for her to do, but it often means I'm not getting her what she wants even though she thinks she's being very clear.

Watching Jelly's language develop has been a real eye opener for me and shown me not only how powerful communication is, but also how easily it can break down.

 

Use your words

Today is the "Communication Shutdown," a day in which many have agreed to stay off Twitter and Facebook to support people with autism. The idea is to limit our communication, to support the many people with autism who have trouble communicating every day. I learned about this on Facebook a couple weeks ago, and it sounded like a good idea.

Then I read a post called The Autism ShoutOut! by Sunday Stilwell at Adventures in Extreme Parenthood. Sunday is a wonderful blogger who is also in the autism parenting jungle. She explains why she is not participating in the shutdown, instead choosing to use the opportunity to promote autism awareness. I thought that sounded like a good idea, maybe even a better idea. But I hadn't really decided until I read John Elder Robison, Aspergian and autism advocate, on Facebook this morning:

There are two communities today: Autistics Speaking, and Silence for Autism. I don't understand why two groups propose opposite actions on the same day. Speaking favors spectrumites who CAN speak for themselves. I'm all for that. At the same time, I do everything I can to promote research that will help our autistic population who CAN'T speak, today, or any day. In doing that, I believe I support both groups.

I responded:

They are on the same day because one was in reaction to the other. Like you, I support all groups of people on the spectrum. But today, I am not quiet because my goal for my son is communication (spoken, signed, or otherwise). And, when he cannot speak for himself, I will do my best to speak for him.

So today, I am not quiet. I am thankful that I have the power of my voice to help my son find his. I hope that I can use my words to support others who are raising and teaching children with autism.

Last year, Eric Duquette graduated from high school as salutatorian. He has autism, and his speech has been an inspriation to many. Duquette said, "Daniel Webster wrote that 'if my possessions were taken from me with one exception, I would choose to keep the power of communication, for by it I would soon regain all the rest....For me, learning to communicate did mean regaining all the rest."

I couldn't have said it better myself.

The Magnificent Mrs. M

Moe is now in his fourth week of preschool, and we’re pretty thrilled about how it is going. Despite the fact that I have already had to pick him up early from school a few times because of a bloody lip and a bout of, let’s just say a stomach ache, I am for the first time 100% positive that he is in the right program.

There are many, many different programs for kids with autism and they are based on many, many different philosophies, like Floortime, ABA, or PRT. Ours is based on the Competent Learner Model. In practice, most of these programs seem to me to look very similar, and I’m convinced that the success of any given program depends first and foremost on the skill of the teachers involved. And Moe’s teacher, the Magnificent Mrs. M, is the best. There are also two permanent aides in the classroom.

Mrs. M sends home a communication book every day with a quick note about what happened in class that day. I think all of the kids get the same basic summary, but often there will also be a little handwritten note from Mrs. M. Parents are encouraged to write in the book to send messages back as well.

Here is part of the note from the first day of class.

Moe, who barely spoke a word the entire summer, talked in class. This does not seem to be a fluke. From the second day of school:

Check out my mad photo editing skills!

The book is full of notes like this. Every day, Moe has a little bit to say. Even last week, when I picked him up early because of aforementioned stomach issue, Moe’s note said he “did the hand motions for my favorite song…The Monkey!” And this seems to be transferring to home as well. Moe has been using words here and there, and he even spontaneously asked for water – using the sign for “I want” while saying “water.” I didn’t prompt him, he just made a request. This is HUGE. It means he isn’t just labeling things. He is starting to communicate. I’m hopeful it continues.

Here is my favorite note so far. I think you’ll understand why I think there is something very special about this classroom. This is from the day after Moe had fell on the playground.

He’s the light of my day too.

Back to school and dreaming big

The alarm went off at 7:00 this morning and my heart skipped a beat. Today is Moe’s first day back to school!

Many of the kids in Moe’s old playgroup will be starting preschool this year. I’m looking forward to seeing the pictures of them in their new school clothes, backpacks on and lunch boxes in hand. For Moe, this is old hat. He’s been going to school off and on for over a year now. Although there were some tears at drop off today, as soon as he saw his old classroom, he was all smiles. His teachers greeted him with big hugs.

This is a really important year for Moe. Last year was a really important year too, and it didn’t go as well as I had hoped. It took a few months for us to find the right program. And when we did finally get him the right type of therapy, I had such high hopes for the progress he would make. I imagined that at the end of a year, he would be connecting, talking, communicating. Maybe he’d still have some social issues, difficulty with play and imitation, but he’d be getting back on track. Moe did make progress, but quite honestly he’s not where I wanted him to be. I don’t think we made any mistakes, and there are only a few things I might have done differently (knowing what I know now), but developmentally, he just wasn’t ready to do what I hoped he would be doing, especially in language development.

So here we are. Moe is three and not talking, though lately it seems as if he may be trying again. He’s back in our public school’s preschool autism program, which he attended for just a total of 6 weeks at the end of last year and during the extended school year. Today, we’re starting fresh with a great program and wonderful teacher and again I have such high hopes. I’m afraid to wish for too much so I’m not disappointed – no, heartbroken – again. Jeff reminds me that we have to hope for it all, because what else would we do? Hope for less? If there is one thing I’ve learned, it is to never set the bar too low.

At work, we would always set some stretch goals for a project. These were the tasks we hoped to achieve, but that were probably slightly out of reach. In the striving for them, however, we probably accomplished more than we would have without them. So this year, I will let my hopes and dreams for Moe stretch as far as as I can imagine.