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Autism In The Family

Created by dave. Last edited by dave, 8 years and 9 days ago. Viewed 1,466 times. #1
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Very Important Message

(Originally posted 29 September 2006)

Bear with me, this has been a rough week and I've given this speech a number of times so far. This is long, but important.

As you may be aware, we have had some concerns regarding Alexander's development. This spring, at the age of two, he still was not talking.

This April we became aware of the First Words people. This service is provided by the government to assist parents of children who are delayed in beginning to talk. We had a screening meeting where Jenn talked with the representative, and based on that discussion plus the fact that Alex was two at that point, we were accepted onto the First Words waiting list.

The First Words people had a look at his file and based on that we were referred to the Ottawa Children's Treatment Center. This is another government-provided service which is to detect children with more challenges than just a delayed onset of speech. They called us and had us placed on the waiting list for their services.

On Wednesday September 20 we had our assessment meeting with OCTC. We spent two hours with a developmental pediatrician (plus her resident) and they did a complete history of Alexander plus observed his behavior during the meeting. Based on this we have a preliminary diagnosis of Autism Spectrum Disorder.

How did we get this?

The doctor has a sheet of particular behaviors, and if you have at least two from this group plus at least one from each of these other groups then you get the preliminary diagnosis. The list includes things like:

  • delayed onset of speech
  • delayed development of play: Alex does not engage in imagination-based or representational play (ie picking a toy and having the toy act out the day-to-day things he sees around him, as in Teddy goes to playgroup, Teddy has lunch, Teddy goes to bed; that kind of thing) or indirect play (using objects to manipulate other objects; like using a spoon to dig around in a bucket of marbles)
  • lack of intent to communicate: even in children without speech, they have a desire to communicate. Say a child has a new toy and he is excited about this toy. Even if he can't speak, he will come up to you and non-verbally share his excitement. Alex does not do this.
We worked the sheet with the doctor and agree with her identification of the various points, and trust her assessment that these signs point in this direction.

What does this mean?

In the long term it could mean anything from Alex growing up like his father to "Rainman" or more profound. The doctors cannot do a psychological workup until Alex is at least four and a half, and until then the specifics of Alex's challenges will remain undefined.

More immediately, it means that we get access to a bunch of specialists and services to help us figure out what challenges Alex has ahead of him and to help him, plus us as his parents, meet them. Specifically it means we will get:

  • an infant development worker who will visit Alex at home to help Jenn and I learn how we can be helping Alex in the home
  • a speech therapist to help him progress with his talking
  • an occupational therapist who will help us with socialization, play development, and his eating
  • a social worker who will ensure we are aware of the services we are entitled to and help us through the application process
  • added to the waiting lists for IBI/ADA services
  • access to geneticists
Those of you with knowledge of autism may be aware of IBI/ABA. These are the current "big stick" when it comes to treating profoundly autistic people. It can involve up to 40 hours a week each of occupational therapy and speech therapy and is therefore very expensive. There is a two year wait list for this service, so at this point we are being added to the list and if we do not need the service by the time we get to the top of the list then it will be harmless. If you recall there has been news recently regarding decisions in lawsuits by some Ontario parents against the Ontario government's unwillingness to pay for the service beyond the age of six. Currently the courts are siding with the government, but the parents are considering appealing to the Supreme Court of Canada.

Regarding the geneticists: we are still planning to grow our family, however we have doubts as to our ability to meet the needs of a second child with the same or more profound challenges. We therefore feel it is our responsibility as parents to both Alex and any subsequent children to understand what risks there are of future children having these kinds of challenges. OCTC will give us access to some geneticists who may be able to help us understand the risks that future children may face. And as we are in the time frame where growing our family is ideal (we are all getting older, and we do not want too large a gap between children) this is something we want to address sooner rather than later.

This is the important bit here.

There isn't any easy way to say this, and I'll probably offend a bunch of people by saying it, but it needs to be said.

What we need you to take away from all this is: yes, this is a shock, but Jenn and I as parents are on top of the situation. We are aware of the problem. We are educating ourselves regarding the situation. We are in the system working with the professionals. We will ensure that Alex receives the help he needs and will prevent the things he doesn't need from happening to him.

We are his advocates and ultimately, as his parents, we are responsible for him.

That said, this is a shock to all of us but Jenn and I don't have the time or energy to individually hold everyone's hand as they come to us. We understand you are concerned for us, and you are concerned for Alex.

Jenn and I have a lot to carry, please don't make us carry any more than necessary.

Please don't call us just to check up on us or Alex; we will try to keep everyone informed through the website.

Please please please don't spend eight hours on the internet researching autism and then snowblow that information at us in a fifteen-minute blizzard. (Note that I am not saying "don't educate yourself if you are curious", just "don't dump the resulting condensed knowledge on us".)

What we need from you first and foremost is your love and understanding for Alex. We want everyone to treat him exactly like any other normal boy.

If there is anything special we need you to do for/with him, or to avoid doing, we will tell you.

If we require help, we will ask.

I guess the bottom line is that we are grateful for your care and concern, and your offers of help. But: Trust us. Just please don't try to pro-actively help.

I apologize for the tone of this message, but in the past some people with the best of intentions have buried us with information faster than we were prepared to accept or expected us to support them as they learned of our situation. This is a major challenge for our family and I may be a little pig-headed in defending it right now.

We would like to thank you for sticking with us through this long post, and for the support and help we have received thus far. As major developments occur we will add posts to this website to keep you all informed.

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This is a collection of techical information, much of it learned the hard way. Consider it a lab book or a /info directory. I doubt much of it will be of use to anyone else.

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