"Being Autistic, Being Human"

I’m not sure how I missed this but in September, Speaking On Faith, a program produced by American Public Media, did a special on autism. A friend of mine sent me the link to the website.

The interview of Paul Collins and Jennifer Elder looked into their relationship with their son, Morgan, who has autism. Paul Collins, a literary historian, has written a second book on autism called Not Even Wrong: Adventures in Autism. Elder is an artist and author who has written a number of books for chidren regarding autism. Her latest is Different Like Me: My Book of Autism Heroes.

What was funny was that their descriptions of Morgan’s behavior reminds me of all three of my children.

My husband jokes that Gabrielle is “all transmit, no receive.” She’s constantly telling us things that aren’t that important and aren’t urgent but she gets them in her head and they have to come out. Right then, right there. She can be unaware of social nuance and yet be extremely sensitive and emotional. She’s brilliant and gets primarily A’s in school (except handwriting) but getting her to do homework ranks up there with telling her she needs to get a shot at the doctor’s office. She hates it– although getting a shot sends her over the edge. She’d rather watch television over just about anything else. She doesn’t like to read (which drives me absolutely nuts since I prefer reading over television) and getting her attention is like trying to engage a brick wall in conversation.

Peter has a head for geometry– he can identify and tell you what an isosceles triangle is, a parallelogram, a trapezoid, an octagon, and a pentagon as well as the common shapes. He also has a fascination with music, numbers and letters. Will he have an extraordinary ability in math or music? I don’t know but I know I am fascinated watching his abilities develop.

Nathan has been developmentally pokey because of his PDD-NOS but as he catches up we are seeing that he has a knack for reverse engineering (I worry that when he’s older, I’ll see the television or computer taken apart!). He also likes to experiment by “mixing” liquids in glasses to see what happens when he does (of course this has the added effect of making a mess). His mechanical abilities are astonishing. We keep joking that he’ll be an engineer or chemist.

No matter what happens, I have been privileged to have been a part of this. I have learned so much– about myself and the human mind, about my children and what it means to give of yourself. I am truly grateful that God has blessed me–truly blessed me–with my children.

We’re Losing a Therapist

Today was a very sad day for us. The occupational therapist who has been working with Peter since his diagnosis two years ago is leaving. She was able to get a job as a therapist closer to home (she lives an hour away from here) and announced last month that she was leaving. Today was her last day with Peter.

I don’t think Peter realizes what has happened but I know he will miss her. From his behavior, I think– no kidding– that he’s half in love with her. For example, Children’s Hospital opened a brand new therapy center last year and moved less than a quarter mile from our home. But driving past their old location this past summer, Peter called out from the back seat, “Go see Allison?” And I tried to explain that she wasn’t there, that she was near our house now but he got upset that he couldn’t go and see Allison. He hasn’t done that with any other therapist or teacher, just Allison.

Therapists are worth their weight in gold– Peter’s OT certainly was. Not much surprised Allison and she had the most amazing suggestions and tricks to calm him down or interest him in activities. We will miss this woman who taught us so much and treated Peter and his autism as if it were the most normal thing in the world.

Potty Training

Uh, yeah. Well, suffice it to say that potty-training under the best of circumstances is a bear. Add two trying to train at the same time plus the added complication of autism and you have the basis for a new reality show.

Let’s put it this way, I am so glad we’ve replaced most of the carpet in our house with laminate flooring. Clean-up is a breeze.

Peter will be five in a month and this is probably the third time we’ve attempted potty-training. He seems to take an interest in it and then regresses.

Nathan on the other hand is taking to it like a duck to water. His developmental delays have gotten in the way some so he is still struggling to tell me he has to use the restroom. Like most kids, he also forgets about toilet training when he’s really involved in something. But slow progress is still progress.

Oh, and M & Ms make great incentives.

Converging Worlds

I just posted this on my political blog. And although I generally try not to mix the content or purpose of the two blogs, today I feel I must:

I just received an e-mail from someone at Britannica Blog who thought I would be interested in a recent post on autism and presidential politics. She was right. I have to say that although my focus on this [my political] blog is more traditional right to life issues, there is a convergence for me on autism, the right to life and the elections.

Let me explain–

Autism is not a condition that can be screened for before birth. That said, I have seen some pretty obnoxious comments on the internet. Things along the lines of “if these people know their kid is going to have a disability, why don’t they have an abortion?” My concern is that most insurance companies in a vast majority of states (last I checked, 42 of them) do NOT cover therapy for children with autism. Our insurance company does but that’s because the employer is based in Washington, D.C. and purchases its insurance package from the state of Maryland– which is one of eight states that DOES require insurance companies to cover services for autism.

The monthly total for our sons’ two hours/each a week private therapy is approximately $4400. No, that’s not a typo.

Currently, research is focusing on genetic causes for autism and my fear is that the day will come when we will be able to screen for autism just like Down syndrome. And just like Down syndrome, approximately 90 percent of those babies testing positive will be aborted.

The very fact that parents can go bankrupt paying for services their insurance companies do not cover could encourage parents to turn to abortion.

This is very much a right to life issue. Thus far, autism has played a minor role in the presidential race and certainly abortion, as the larger issue, has played a much more significant role.

But with 1 out of every 150 children being diagnosed with autism, the impact of this issue in the next presidency, and on the pro-life cause, cannot be understated.

A Date for the Cranio-Facial Clinic

Well, at this point we know we will attending the cranio-facial clinic on March 17th. On that day, we will meet with 12 or 13 doctors who will go over Peter’s records and CT scans. This group of doctors will include his neurosurgeon, plastic surgeon, a cranio-facial surgeon, etc. Part of the point of the clinic is to determine whether surgery is needed. Cranial synostosis is most often found in infants– if it’s not too bad, doctors sometimes wait and follow-up with x-rays and such to determine if the condition is worse or if it is causing problems. In Peter’s case, we’ve pretty much have already been told that we are headed for surgery. The clinic for us will be an opportunity to hear what doctors recommend for the surgery– in other words how extensive– and for us to ask questions.

We were told that the closer we got to the clinic date, the neurosurgeon’s office would have surgery dates to discuss. So we are still in a state of “hurry up and wait.”

First day of school for the new year

I was never so happy!

Okay, I do miss the kids. BUT Gabrielle was doing “projects” that apparently required distributing construction paper throughout the first floor of the house. Peter commandeered the computer so I couldn’t get on it without a bit of a fight. And Nathan– well, Nathan ran the extremes between being clingy and independent.

He did do something exciting yesterday, he said “Mom, watch me, look” clear as day. I was so proud of him.

On another note: We are waiting to hear from the neurosurgeon’s office regarding the cranial-facial clinic. We’ll be getting a call telling us when that will be in February and that’s the next step.

As my husband said, Peter has been an adventure almost from day one. (Peter’s day one– in utero).