Monday, October 20, 2008

The Little Engine That Could.

Things have been very quiet from the Fickle Feline front lately. I have been working through some things that have made me a bit more introspective and haven't really felt like expressing myself, at least not online. Readers that know me personally, have known for a while what Scott and I are dealing with, so this won't be a huge surprise. Our son Max is considered on the Autistic Spectrum. We don't have an official diagnosis yet, but we are fairly confident that once we reach the top of the 14 - 16 month waiting list, this is what we will be told.

For the longest time, I didn't want to accept that Max has ASD. I thought that he would just magically pull out of it if we worked hard enough with him. We have known something was "not quite right" since Max was about a year old. He would bounce his head on the couch repeatedly, and rock back and forth. He didn't talk or even babble creatively and his eye contact was inconsistent. Our doctor didn't take our concerns seriously and basically wrote us off as worried first time parents. I actually had to go to our local municipality to get resources for Max, with no help from our family doctor. It is only now that Max is 2.5 years old that our doctor is being of any assistance.

Max has been going to speech therapy since February. Scott and I have taken courses on how to work on non-verbal communication. Max has a consultant that visits him at daycare to work with him on social skills (sitting for circle time, playing appropriately with toys, etc). He has seen an Occupational Therapist as well. We are looking into additional therapy for him while we wait for the official diagnosis.

The thing about Max, is he is a generally happy kid. His highs are super high and his lows are very low. He is beautiful and he melts our hearts and charms the pants off of everyone he meets. Lately there has been a lot of progress, which is exciting. The progress comes in little steps though, so you have to step back to add it all up. He is now saying "mama" and making animal sounds. He stacked blocks last week for the first time, and has started clapping his hands when he likes something. While these little milestones are no big deal for a regular kid, for Max these are a huge deal that bring tears to our eyes and make our days.

I don't want you to think I feel sorry for myself, because I don't. I know I am blessed. I am thankful that Max came to us and not another family. We feel in our hearts that he will be okay in the long run. We try to take it a day at a time and try not to look too far into the future. Max is a special little guy and we love him more than tall, tall buildings.

The thing that makes me angry is that there aren't more resources for children with ASD. The waiting lists are ridiculously long just to get a diagnosis. And when you get a diagnosis, you are merely put on another 2 year waiting list for IBI therapy. This last Federal election sent me into a tailspin - the majority of the candidates do not want to address Autism at the Federal level and think that the provinces should be left to deal with it as it is a health care issue. Well, let me tell you that the provinces are failing miserably at this and what needs to happen is that federal funding needs to be earmarked for Autism therapy so that children get diagnosed and treated early. Because of the huge waiting lists, we are going to use private therapy for Max, but for many families, this isn't an option.

Anyway, I've wanted to write about this for a while, but it was just too hard. Now that I've spilled the beans, I will talk more openly about Max's progress and development in hopes of helping other families dealing with the same challenges.

10 comments:

  1. Sweetie, I am so proud of you. As a mother of an autistic son myself, you know I get it. You know I know how hard it is to get doctors to stop telling you that you are a bad parent and to start giving you the help you know he needs.

    You are absolutely the most fantastic mom. He is such a lucky, beautiful kid. Bravo for being so brave and sharing your story.

    Hugs,
    A. xx

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  2. I'm so sorry to hear about your struggles! I had no idea. I hope that Max gets the help that he needs - he's already got all the love he'll need, I'm sure.

    My thoughts are with you guys.

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  3. Thank you for sharing Kat. I know you know that my thoughts of support are with you and Scott and Max. I look forward to seeing you all on Saturday.

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  4. Anonymous6:52 PM

    This post touched me in more ways than you could ever imagine.

    You're a wonderful mother, and have an absolutely amazing son.

    Thanks so much for sharing this.

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  5. Max is a beautiful, happy kid and you already know that we think you are doing an amazing job as parents. The second you walk into your home you can feel how fiercely you love both your babies and your patience and determination when it comes to getting Max what he needs is awesome. You're a rockstar mother and you have a wonderful, perfect family.

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  6. Anonymous1:49 AM

    We love you all so much. Angels look over you.

    mb

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  7. I love you and love that little guy!

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  8. Thanks everyone for the support and kind words. It really does help knowing we have so many people looking out for us :-)

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  9. You guys are such fantastic parents...Max is so lucky to have you.

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  10. Kat--remember the advice you gave me last week? That.

    One of the best things that could happen to Max is being born to a mom who will pull out all the stops for him, and you are amazingly determined. Remember to take deep breaths and be kind to yourself.

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