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Saturday, February 7, 2009

Diagnosis

I started working at a paying job this week. I survived. The transition for the family has hit some rough patches, but I think it takes more than a week to figure all that out.

The last few weeks have brought a few extra appointments for Jared. He's had some tests done and yesterday we met with that hotshot pediatric psychiatrist who came from Calgary to see us. I heard he was brilliant. As I watched him do his work I had to agree.

He's gone through everything - all the medical records, the tests. He interviewed us and Jared and his school teacher. He asked a lot of questions. He shared his thoughts and part of it surprised me and part of it didn't.

Jared is on the Autism Spectrum. Some call it Asperger Syndrome. He is a high functioning person on the spectrum. This part did not surprise me. It validated what I had been feeling for a long time. Teachers brought up the subject when he was younger, but the doctors we saw didn't agree. The doctors here thought it was a possibility but wanted a second opinion. I don't think it reflects on the medical field at all. Jared is so verbal and has so many other strengths that it's taken a specialist from Calgary to say for sure that it is. I also think this was the right time for diagnosis. Jared's differences from other kids his age is more apparent now than it was in earlier years.

Jared also has severe ADHD. This was a surprise. When you live with it for so long, and you don't know any differently, life becomes this new level of normal. I didn't think his ADHD was severe, but I've never met another diagnosed child to observe and compare to Jared.

Jared also has an issue with medication we will need to figure out. We are not sure what is going on. Jared's history is such that he starts a medication and it works for a few days or a few weeks and then the meds seem to lose effect on him. The psychiatrist said that some individual's bodies can become resistant to certain medication. Sean and I hate that he is on as much as he is, but we have also seen the success Jared has achieved with the help of medication. Because of this we will continue with various trials to see what will work best for him.

This doctor is going to advocate strongly for us with the Ministry of Education to get Jared a medical disability coding and his own educational assistant at school. He told us we would get a copy of the letter and not be alarmed or frightened by the letter. It's going to sound 30% worse than reality.

The diagnosing is done. Now we are being political. We are into getting money out of the government for Jared's education. This is business. I get it and I am all for it.

The future is hazy at best at the moment. I don't know what to expect or if anything we do now will change. I guess the direction we are taking is more clear, but we have been dealing with this issue for years now. It just didn't have a name.

I worry about the unknown. What will he excel in? Will there be things he will miss out on? How much do I protect him from hurtful words of others?

I heard that Autism is considered the invisible disability because in many cases there is not a physical sign of a disability. He looks like any other regular kid. Sometimes I am grateful for that. Sometimes I think it may be the cruelest thing. Where do you find compassion from strangers?

Here's what I do know. Jared is a most unique and wonderful child. He is beautiful. He is handsome. He is smart. He is loved not only by his family, but by the other adults who have the honor to cross paths with him. He is more teacher to us than student. His spirit is strong. Really strong. I would miss him if he wasn't who he is, even though the challenges are many.

I know that moving here was for Jared. I suppose had we not moved we may have achieved the same results, but not as quickly as we have here. I may have had to fight more. I may have had to finance much of the testing on my own. But since coming here I have felt like we were in the middle of the ocean and caught up by a wave that carried us closer to shore. Things have just happened and we were along for the ride.

So here we are, my gut feelings confirmed. A sense of direction will become more clear to us and we can start doing what we need to do for our whole family as we continue our journey in life.

5 comments:

The Roelofs said...

Deb, I am glad that things are going well for you in Lethbridge. I am glad you are getting things figured out for Jared. I know some couples here who have Autistic Children and things can be a battle to get them what they need. But they keep fighting for their kids. Good luck and all the best. Take Care. Carrie

Martin Cunliffe said...

First, I love you guys. It's also been wonderful to have your parents around in the ward. Each of them have had a profound influence on me. In particular, Morgan has been a most delightful teacher.

Second, I want you to know that I work with two people that have Asperger's, one is a very good programmer, the other is a creative writer for various magazine's. I feel honoured to have known them, and they have accomplished much in their very productive lives. Since you are also tech-savy, it may also interest you to know that the guy who developed BitTorrent, also has this gift.

Again, although my heart goes out to you and the challenges that this sort of thing demands of you, I know with all faith, that this will work out well for all of you, especially Jared.

::hugs::

Anonymous said...

I'm just thinking of your and your family and hope for the best. My nephew is autisic and it is amazing how far he came once the diagnoses was made and help was given. God Bless.

Erika Paxman said...

Hi Deb
I was sorry to read of your challenges. Kate has done quite a bit of study on Autist spectrum and we know many people that fall within this. One of her dearest friends sits on the high end and recently graduated from university. The work that is done with those dealing with this challenge is amazing. Knowing the testimonies, intellegence and humor with which you approach life, I have no doubt you will all do well. Love and hugs from the west coast. Erika

Shelli said...

Deb, love you and I love that boy!