Aiden Update

I figure it is about time I give you all an update about what is going on with Aiden these days. For those of you who don't know we started our son on some medication this month in order to help him function better in his daily life. And you know what? We think it is actually helping! He does seem to be less explosive which is fabulous.

Today the dose was raised to what will hopefully be his semi-permanent dose until his official assessment finally happens.

Speaking of which we talked to the centre where his assessment will take place this week. We are officially on the waiting list. And oy what a waiting list it is. They told us it would be AT LEAST one year until they could see him. ONE YEAR!!!! Crazy.

We put our names on their cancellation waiting list so that if someone cancels they will call us that day and we will drop everything and drive the 3 hours to the centre so he can take the vacant spot. I am fervently praying someone cancels soon. Feel free to pray too. We need it.

The centre also told us that they normally don't work with kids as OLD as Aiden. He's 6 and normally they stick with kids who are 5 and under. They took pity on us since I have been trying to get help for him since he was THREE and we have just been ignored and shuffled around and treated like crap by the system. The lady we spoke with was VERY unimpressed that we had not been referred years earlier.

It was a little funny though because she told my husband that she normally has a LOT of questions to ask but because I filled out their 20 page questionaire so thoroughly she didn't have a lot to ask. Yay me. It is at times like this when being a complete nerd comes in very handy.

I suppose the most interesting thing about the conversation was that all the resources she suggested to us are geared towards kids with autism spectrum disorders. Obviously she couldn't diagnose over the phone, especially since the lady we talked to wasn't the doctor, but clearly they seem to think my son fits in that category. So I guess I have some serious researching to do in the coming months about autism spectrum stuff.

Apparently now that we are officially on this coveted waiting list we can qualify for some help for Aiden. Of course it means I have to call a zillion different people and try to navigate this insane system some more. And honestly I'm not even entirely sure what I am asking for.

The lady seemed to think that if we happened to contact the right people and they happened to be in the right frame of mind to give a crap about our situation then we MIGHT be able to start an application for funding for Aiden at school. Which I think means he would get some extra help.

IF I can figure out who the heck to talk to.

Seriously there should be a manual given to parents of kids with special needs explaining HOW to get the help you KNOW is needed.

Dear stressed out parent of a special needs child:

We regret to inform you that we could not care less about your situation. But if you insist on continuing to bother us we would like to suggest the following steps to take...

Step one: call everyone in the phone book. Start with A and work your way down to Z. Tell everyone what the problem is and ask them if they can help. Take notes. Follow up on any leads.

Step two: call every doctor and medical professional within a 300 mile radius and ask for help for your child.

Step three: call every person affiliated with the school your child attends and ask for help.

Step four: call the spouses of every person you have previously contacted and try to get on their good side in order to win favour.

Step five: write letters and emails daily to all the people you have contacted inundating them with written reasons why you need to be heard.

Step six: camp out on the front steps of the mental health professional in your area until someone listens.

Step seven: document every thing you have done in order to prove you have tried to get help for your child so that when you finally DO get someone to listen and they say "have you talked to anyone else about this?" (in that tone that suggests you are just a complete lazy moron of a parent who has done nothing but eat chocolate and watch soap operas all day while your child suffers) you can just hand them your stack of documentation. That should shut them up. Briefly.

Step eight: weep, scream, cry, rant, vent, and suck up to anyone who has any authority anywhere.

Step nine: lather, rinse, repeat.

Step ten: collapse.

If these steps do not give you the desired results than please move to another country.

Sincerely,
your nemesis,
Medical and Metal health Canada.

Ok. So I am exaggerating a tad bit. I have met some very wonderful and helpful people along the way but I really do think this system is insanely difficult to navigate and a guide would help a lot.

All in all I am very pleased with how things are going now though. Aiden is getting some help from the best pediatrician in the world. He has an excellent teacher who honestly cares about his well being. We are ON the waiting list for an honest to goodness assessment that, in theory, can get my son the help he needs to live happily. Things are moving forward.

I must admit that my mind is almost entirely taken up with it all right now though. And I know it stresses people out that we have gone the medication route with my son but we really do think we are doing the right thing. If it improves Aiden's quality of life then it is worth it.

So there you have it. Please pray for Aiden and for us and for a cancellation so we can get an earlier appointment!

Comments

the Doug said…
I love you. I like your letter/guide thing. It made me chuckle.
Anonymous said…
I chuckled as well, and twittered, and snickered, and sent up a thank you that answers for you are only a year away! Finally :) You guys are VONderful parents, and I'm glad Aiden is feeling a bit better lately.
XOX,
T in the Cap.
Bebemiqui said…
I'm glad to hears things are moving (slowly). Could I reprint your letter on my blog and ask my American friends if they want social healthcare?
We're so poor we're on the government program regardless...man, it sucks.
Colleen said…
Tara,
When we were in Japan, I was a teacher aid for Don and Carol Love's son (Joel) - because he has "Pervasive Developmental Disorder - Not Otherwise Specified" (aka: P.O.D.- N.O.S.) which is a crazy long title for the fact that he has an Autism Spectrum Disorder that didn't fall into any specific category that they already had. I worked with him there while he was in grade one because at the american christian school there they didn't have any funding for T.A.s or anything, so the Loves had to hire their own from Canada to come do it.
ANYWAY, I just want to say that a lot of what you've shared about Aiden reminds me of my experiences with Joel, and I somewhat understand how hard it is. (I wasn't his mom - just his teacher - but I spent 5 days a week with him from 7 am until 4 pm, so I still had many many days when I was in tears!) I hated how people would stare at me when I took him to school on the train (thinking I was his mom) because he would scream at the drop of the hat, or have an all-out-tantrum on the floor, or whatever.
Well, this comment is getting far too long - I just wanted to say that I somewhat know what the Autism Spectrum disorders are like (I worked at a daycare as a T.A. for a 3 year old boy with one a couple of years ago too) and I'm thinking of you and I'll pray that someone cancels for you and that it happens to fall on a very convenient day for you.
Oh, and I liked your letter too. IT sounds ridiculous, but sadly its actually probably pretty accurate.
Take Care,
Colleen
Shoz said…
I know it has been a long time since we've talked but seeing as I work with two girls that have sever ASD I may have a few little hints that might help. If it's all stuff you've heard then we can just chat. I miss you. Can I call you on Monday night?
Jamey said…
It's a good feeling knowing you can be paitient as long as you get the help you need. I will pray it is sooner than later.
Robyn said…
Yay yay YAY!! I am so happy for you guys! Yay for medicine that seems to work & for being on the "LIST". That is awesome.
Amanda Daybyday said…
I'm so glad you're finally seeing a light in this mess. And that letter? SO TRUE. I've felt so lost this last year. And I think people see the child, think they know what's wrong, but don't tell you because they don't think you're ready to hear or they don't know for sure. But they hint. And so, I spend a lot of time putting together all those 'hints'. Sigh. If only they had case workers or something for us folks.

And, for what it's worth...I support the drug thing. Sometimes it really is needed.
I'm glad to hear that things are starting to improve. Your manual was awesome!

I have a really good friend with a son that has epilepsy and she has met with dozens and dozens (it seems more like hundreds) of workers in every possible field from Occupational/Physical Therapists to Psychologists to Childhood Eplilepsy specialists. From what I have learned from her, you need to document everything and be the best advocate there is for your child (not that you haven't been already). She is loud and she makes sure that someone listens to her concerns. If they don't, she will find someone who will listen. I can only imagine how difficult a road this must be for you, but I will be praying for wisdom and a cancellation.
Jenni Jiggety said…
I hope you can get in for that appointment very soon! I wonder if there is some sort of advocacy group in your area that could help you out? There has to be other parents nearby dealing with the same awful system!
Anonymous said…
Dear Tara,

Just want to go on record as being fully supportive of your choice to use drugs for Aiden at least until he actually gets diagnosed. You and Doug are superb parents and I trust your choices.

Love,
Patricia
Oh, bless your heart. I'm sending many prayers your way that someone will cancel their appointment. Best of luck to you getting some help!

Thanks for the Entrecard ad as well.
ChristiS said…
I'm so glad that things seem to be improving! I'm praying for a cancellation ASAP! Sending love and hugs from down South!
YAY for you!! (yay for Aidan).
Have you read Rocking Pony? She's in a battle for her son as well. It's infuriating to think of what parents have to go through to get their kids what they need!

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