Coping with Autism

A little over a week ago, a perfect stranger e-mailed me to ask me to please get a second opinion about Peter's surgery. Well, you don't just shrug off something like that. You think, "Okay, as much as I like Doctor So and So or the the CF Team at Such and Such Hospital, maybe, just maybe, God is shouting in my ear." So, with her encouragement, we've set up an appointment with Dr. Ben Carson at Johns Hopkins (I mean, really, how do you top one teaching hospital? Go to another.) We have an appointment with him on May 9th, the only problem is he doesn't take our insurance so at this point we're paying for the appointment out of pocket ($276.00) and hope our insurance covers part of the bill. Either way we'll get his expert opinion and go from there. In case you are interested, the woman who e-mailed me has a 16-month-old son with metopic suture closure. His operation is going on as I write this and I hope Jeremy will be out soon with a round head-- albei

Have driven me nuts. Yesterday, I went with the boys to pick up a few plants for the flower bed (they're always digging so I thought "why not") and we came home and planted them. We had just finished when Nathan found my wallet with the attached house key. He then went in the house and locked the door. I tried to get him to open the door or unlock the door-- anything-- but nothing doing. I checked the van (I had the car key and the phone with me) for a spare house key. Gone. Probably got used by me or Gabrielle and never put back. So after about 10 minutes of trying to get Nathan to unlock the door, I called my mom to see if she had the spare key with her. No, it was at the house but my dad's retired so she called to see if he could bring it over. Here we were twenty minutes later, dad was about 10 minutes away. Nathan was finally realizing not only that he was by himself but also that I couldn't get in. He was starting to cry when he finally got the hand strength

I received an e-mail letting me know about an easy way you can support autism research and services. Chevy has teamed up with Autism Speaks to raise awareness of autism during the month of April which is Autism Awareness Month. For every person who takes a virtual tour of the new Chevy Malibu, Chevy will make a donation to Autism Speaks up to a million dollars. This a very easy way to support the work of researching autism. According to the GM/Chevrolet press release: During April – Autism Awareness Month – people who go to the Autism Speaks website ( www.autismspeaks.org ), can click on the “Help Chevy Help Autism” icon and take a free virtual test drive of the 2008 North American Car of the Year – the all-new Chevy Malibu. Chevrolet has committed to a minimum contribution of $500,000, but every virtual test drive taken gets Chevrolet closer to its goal of donating up to $1 million to Autism Speaks to support its mission of increasing awareness of autism and raising money to fun

Well, day one of Spring Break has ended not so much with a bang as with a whimper (mine!) My husband's parents stopped by on their way back home after visiting my sister-in-law and her family in Georgia. We thought they were staying the night so I was frantically trying to re-clean things that I had already cleaned earlier in the week. (Three kids + two with autism + Spring Break = Great Big Mess) While sorting papers (ironically, mostly the boys' paperwork), Peter and Nathan decided to play in the upstairs bathroom (what is it with autistic kids and water??). Their idea of playing in the water is to clog (a clean) toilet with wipes, pour in a brand new bottle of shampoo and flush-- repeatedly. I realized that a) the downstairs was too quiet and b) I was hearing what I thought was just the washing machine in stereo. While running into the kitchen, I yelled for Gabrielle to run up the stairs to stop them-- I was just in time for water to begin pouring down over the sink in the k

In what was, to us, a surprising turnaround (sounds like an intro to the sport's news on your local network), doctors at MCV have decided that Peter does not need the surgery, at least not now. The following is from an e-mail I sent today to friends and family: The doctors at MCV have agreed that the cure is probably worse than the condition at this time. The surgery is extensive and in an older child the recovery is harder and painful. Peter shows no severe bossing (which is when the skull deforms and sticks out trying to accommodate the growing brain) that’s easily seen (his hair covers it—so no more crew-cuts for Peter) so the doctors and cranial-facial team would rather monitor him over the next few years to keep track of his skull growth. Next year at this time, Peter will go back to MCV and see the neurosurgeon, Dr. Tye, and the cranial-facial team. In many respects, this is a relief but, like the sword of Damocles, it still hangs over us. We have to watch out for symptoms of

Well, tomorrow is it. My husband and I are both nervous about what to expect at the cranial-facial clinic. We think Peter will be okay as far as the stresses-of-the-day are concerned. But you never know with autism-- so we're praying that he's cooperative. I did talk to the coordinator of the clinic. This is how it works: we get to MCV (the Medical College of Virginia) in Richmond around 7:30 a.m., register, and then proceed to the neurology suites. There we'll camp out in the waiting room and wait to be called back to see a variety of specialists. Peter will see a psychologist, speech therapist, dentist, eye doctor, Ear, Nose and Throat doctor (ENT), etc. Then he will see the cranial-facial surgeon, plastic surgeon and neurosurgeon at the same time for thorough exam that they will do jointly. We'll break for lunch and when we come back the team of specialists will meet with the families individually to discuss their findings. It's at this point they decide if your

Okay, maybe more like C-F for Cranial-Facial day but we've put a great deal on hold until after the 17th so it is a bit like D-Day in that it marks a major date requiring significant, flexible planning (granted, the entire free world doesn't depend on it so that's a load off my mind). And it complicates things since we don't know what our schedule will be like in the coming months. When I spoke with the nurse in the neurosurgeon's office before Christmas, she said that she would likely call right before the clinic with a list of suggested surgical dates. I haven't heard from her and rather than be a pest we're waiting until Monday to see what the team says. I am hopeful that Peter won't have to have the surgery but we'll see. The day after the cranial-facial clinic I meet with Peter's teachers, et al. for his IEP meeting. So far, the rough draft suggests that in order to prepare him for mainstreaming in kindergarten they need him to go to school

Nathan's teacher Friday told me that his IEP (annual education goals for an individual with disability) needed to be done by today. She had misread his paperwork and thought we had a whole month before we had to do it. She was so apologetic but I was okay with the short notice so we plunged ahead. Nathan is doing very, very well. His teacher feels that next year he can continue with his three-day a week schedule in a regular special-ed classroom with the goal that he be moved into a "reverse" class the following year. This kind of class would be a more "normal" class in preparation for sending him to a mainstream kindergarten class. Nathan has reached many of his goals. Both his teacher and the administrator meeting with us were impressed with how far Nathan has come in the 18 months he's been at the school. So new goals in the school year are to increase his speech and receptive response, potty training, writing skills, imaginary play, etc. But they've