13 July, 2006

It's a duck!

When Connor was a little younger, he was in an early intervention program designed to work with high functioning Autistic children and prepare them for mainstreaming in traditional schools. Connor rode to school on a bus, along with another autistic child who was in the same program, although he was in a different class. Connor and this other child became friends and Connor even attended his birthday party. As our sons played, my wife and I got to know the child’s parents… two great people. While our methods, as parents, may have differed when it came to how we viewed and treated Autism, our dedication to our child’s well being was the single most important driving factor.

Although Connor and the other child have gone off to separate schools and don’t see each other anymore, I still keep in contact with the child’s mother. This is made much easier, as we are on a community groups Board of Directors together. Periodically, we give each other updates on how our sons are dealing with things and what type of resources we are making use of.

Most recently, the mother informed me of a rather unique struggle that they are going through. This struggle is caused by an issue with the child’s original diagnosis and the services available to him. You see, when they originally became involved with the regional center, he was diagnosed as PDD-NOS. For those that are unaware of this diagnosis (admittedly, I was unaware of it until Connor was diagnosed with Autism) PDD-NOS is the catch-all diagnosis for a person who meets some, but not all, of the criteria of Autism, Asperger’s Syndrome, or Rett Syndrome. At first, this diagnosis did not seem to be a hindrance, as the early intervention programs worked with all pervasive developmental disorders. Unfortunately, as he moved on to a traditional public school, issues became more evident. This has been, unfortunately, exasperated by the increasing budgetary problems facing the schools.

The most interesting part of this whole story is that the mother is actively pursuing a second opinion on her son’s diagnosis, hoping that during a re-evaluation, they will see the traits her and her husband have always seen and will change the diagnosis to Autism. You see, although there may be only one criterion out on the DSM-IV differentiating Autism and PDD-NOS, the level of services are different. In fact, in some cases, people diagnosed with PDD-NOS are not even considered for services that are offered to people diagnosed with Autism, Asperger’s Syndrome, or Rett Syndrome.

It is truly an unfortunate fact that in the world of Pervasive Developmental Disorders, if you don’t have Autism, you are somehow less deserving of services. This is truly disturbing when you look at the variation in the severity of symptoms between individuals with Pervasive Developmental Disorders. It is not uncommon to find a person who has severely impaired speech, social, fine motor skills, etc... who does not meet the criteria for Autism, while finding another person who is very mildly impaired in speech, social, fine motor skills, etc… that meets all of the criteria. By the standards of care that we see today, the person who, realistically, is less impaired would be more likely to get services than the person who is more severely impaired.

Even worse, this concept of different services based on diagnosis is leveraged by providers to lessen their costs. I have heard of many stories in which a school district or regional center has requested that a child be re-evaluated, to see if they still meet the criteria of the original diagnosis. And that, my loyal readers, is the most disturbing trend that has come out of this. It frightens me to think that the people who profess to have our children’s best interest in mind are actually working off a checklist of symptoms, to the ultimate goal of preventing them from getting services.

In the long run, this comes down to a debate on what Autism really is. For those that (wrongly) believe that it is a disease, the system works right. The services are seen as steps to recovery and the re-evaluation is simply a progress check. For those, like myself, who understand that Autism is a fundamental difference in the way the brain is structured and how it functions, there can be no cures, only work-a-rounds and coping techniques. You can’t simply re-wire someone’s brain to function neurotypically.

At the heart of this, the solution is simple. Services should be offered equally to anyone with a pervasive developmental disorder. This will drastically reduce the desire to re-evaluate someone every year to see if they have had enough training in eye contact, controlling their environment, etc… and can be diagnosed as PDD-NOS, there by lessoning the “burden” on the provider.

What it all comes down to is that if it looks like a duck, it quacks like a duck, and walks like a duck… it’s a duck.

04 July, 2006

The Aftermath

For those of you who may be joining this story late, let me catch you up. Connor smashed his thumb in a door and did a great deal of damage to it. So we ended up in the Emergency Room. If you want a little more detail, read my previous blog entry. Now that everyone is up to speed, on with the story.

My wife dropped Connor and I off at home while she ran to the pharmacy to fill a prescription for liquid suspension Motrin and an anti-biotic. Connor was still somewhat detached emotionally until he realized that he could not play with the Game Cube or his Gameboy. That launched a tremendous breakdown. Eventually, I was able to calm him and we sat down to watch television together. Things went pretty good for a while, until the pain finally got to him. Luckily, my wife arrived home at about that time and gave Connor the Motrin and his first dose of anti-biotic.

We were home for maybe 2 hours when I discovered that Connor’s thumb had already saturated the wound dressing and was beginning to leak blood. This was a little frightening to me, as I expected that the tight bandage would be enough pressure to stop the bleeding. Well, I was wrong… I guess that is why I am a phone guy and not a doctor.

None the less, I was in no position to change the dressing and I knew it. With my sad collection of supplies (as mentioned in the previous blog entry) I figured I would do more harm than good. So, it was time to go back to the Emergency Room. Being smart, I called ahead to let the Physician’s Assistant who was on duty that I was bringing Connor back in and that I needed to have the dressing changed. There are perks to working at a hospital; in particular you know who the right people to talk to are.

When we arrived, the PA was ready for us and started to remove the old dressing. The good news was that it looked like the bleeding was actually slowing. The bad news was that it still had not stopped. After discussing the details of the injury with the PA, he decided to call a orthopedic surgeon to get an opinion on if stitches or other steps were necessary. It wasn’t that he distrusted the original doctor’s decision, but that he wanted to ensure that everything was done to preserve Connor’s thumb. I was very thankful that I had someone willing to go the extra mile for Connor.

Although it took a while, the orthopedic surgeon called back and confirmed that the original doctor’s assessment was correct and that there was not much to do at this point. He did insist that we get Connor to see his pediatrician first thing on Monday. So Connor’s finger was re-bandaged and we were off once again.

Sunday was a not necessarily the best Mother’s Day my wife had ever experienced. But, in light of the circumstances, it was not horrible either. Connor spent most of the day warning people to stay clear of his thumb and protecting it like it was as fragile as glass. One of the things my wife and I found truly amazing, however, was that he was quickly adapting to having limited use of his thumb. We watch, in astonishment, as he used his index finger in place of his thumb when grabbing things and never seemed to have to make a conscious effort at it.

To help my wife out, she was still feeling pretty squeamish when it came to looking at the thumb; I took an extra long lunch break and went with her to the pediatrician’s appointment on Monday. Unfortunately, things took much longer than anticipated, as there was a problem removing the dressing and it had to be soaked for some time before it would come off. Eventually the doctor was able to look at the wound and immediately decided to error on the side of caution by referring us to an orthopedic surgeon. Having already done my homework by asking around the hospital, I knew which surgeon I wanted him to refer us to.

The appointment was set for the next day. Unfortunately, I was unable to attend that appointment, but nothing much came from it. The doctor simply stated that the bone would most likely always be floating there and that Connor may or may not permanently loose his nail.

Over time, things got back to normal for us… well, at least as normal as can be. With time, we were able to go from the large wound dressing to a simple bandage to cover up his thumb.

Just over a month after the incident, Connor’s nail finally fell off. We expected this to happen and had been preparing him for it. Unfortunately, no amount of preparing seemed to help. He didn’t see the nail falling off as a temporary thing. All he could understand is that it was going to fall off, and then he wouldn’t have a nail. My wife and I explained to him that another nail would grow to replace it… but it never seemed to sink in. When the nail finally did fall off, My Wife once again explained to him that this was only because another nail that was not damaged needed the space to grow. I am not sure if he understands it, but he seemed to accept it.

Through all of this, Connor taught me a great deal about overcoming adversity. After his thumb was injured, he simply adapted how he did things and went on with his life. Isn’t is amazing what you can learn from your child?