Are You Willing to Make Sacrifices? Here’s What We Did

Like most parents, my wife and I had a sense of dread the moment we received our child’s Autism diagnosis… his entire future, as well as ours, quickly became very uncertain. One of the biggest was school.

For 2 years, we contacted the school board back and forth in an effort to ensure that our son would have help, would have programs and get the resources he needed to have a fighting chance at a decent education.

For those of you who may be reading that don’t know what it’s like, even a high functioning child with Autism will have a monstrously huge struggle in school without help. The crowds, loud noises, the fear that any child gets, tons of information bombarded on them, the muscle/coordination issues that many Autistics have…. it’s just all so much to deal with. The biggest is the anxiety.

The end result is a child that regresses, goes no where, constantly gets bullied, has meltdowns and so forth. It’s not pretty.

So we battled for over 2 years against a severely under funded education system and as our child approached pre-kindergarten age, we were losing.

In June of 2009, we found a school in Porcupine Ontario Canada… a little tiny side town of a little tiny city (Timmins) way up in northern Ontario, a school named Golden Avenue Public School that had actually won awards for it’s Autism program… and yet, no one had heard of it!

This little school in the middle of no where literally dedicated it’s entire basement floor to Autistic children, where classes are split between severity level rather than age. Also, my son’s class has 8 children in it, one teacher and 3 teacher’s aides! That’s 2 children per adult. Plus, they work very closely with us, doing as we ask, and they send home daily reports and we send reports each morning so that we can stay in constant contact. They even allowed peanuts and other foods not usually allowed in schools anymore because they recognize the severely limited diets that many children with Autism have.

Sound like heaven? It is. But it comes at a price.

As I said, we found it in June. So, with virtually no money (was a spur of the moment decision), we contacted a realtor, bought some paint and supplies, started doing last minute renovations on our house, gave away almost all our furniture and exercise equipment, sold what ever little we could, packed up the rest and moved…. in August!

On top of that, because it was so sudden and we ended up with less than no money, we moved in with my inlaws (my wife’s parents) from August to April. While it certainly wasn’t terrible, you can imagine how defeated you feel having to move in with the parents because you have no where else to go. We were just lucky that they live in the same place as the school that happened to be perfect for our child otherwise, we have no idea what we would have done.

Cameron started school in September and 2 weeks in, we sold our house without even being there. We sold it at a loss. We’re still paying for it now, a year later.

We’re in a town that I really don’t want to be in, it’s a 3.5 hour drive to next closest city (there are other towns but a real city is far), the movie theater here has 4 screens, 2 of which have Dolby Stereo sound, the other two is just regular stereo (that’s right, no such thing as surround sound) and all the other luxuries of the city that I had become accustomed to… not here.

I don’t mean to make it sound terrible here, just that it’s a huge difference for me. It’s not what I wanted nor where I expected to be.

But it’s worth it because I can’t even begin to imagine what life would be like, what my son would be like, if he had gone into a city school with 30+ other children in his class, a teacher that had no idea what Autism even was and was left to fend for himself.

And this is just a drop in the bucket (as they say)… many others make much larger sacrifices and while it’s terrible that it comes to that, it is truly amazing to see how far a parent can go for their children.

I’m in a rental apartment, still paying for the 3 bedroom house that was the only real home that my boys ever knew, in a little city in the middle of nowhere with almost none of the resources/luxuries I’ve been used to for so long… but the alternative was not acceptable. My boys come first… Autistic or not.

If the education system or the government or society in general can’t do what we need from them, then we’ll have to do what we can on our own, what ever the cost.

About Stuart Duncan

My name is Stuart Duncan, creator of My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.

6 Responses to Are You Willing to Make Sacrifices? Here’s What We Did

  1. Valeska August 16, 2010 at 11:59 am #

    Stuart, wow. It is truly amazing how we take things for granted isn’t it? My son has PDD-NOS, we got a diagnose after numerous specialists appts in a 6 month period, it was a month shy of his third birthday. The diagnose was bitter sweet… devastated yet relieved… now we had a name to the monster and could attack it head on! Here comes the ‘taking it for granted’ part. Early intervention submitted a request to our local pre-school for an evaluation, if they saw it fit, our son would get free education plus services. I almost fell off the chair the day of the review: He was to receive 4 full-days, mid day on fridays in an all special ed class, all of the services and summer school (including speech and OT). Part of me was ecstatic but the other part was nervous, this happened the day before we received his diagnose. If the school (known for turning away children) thought it was necessary for him to have all of these services, then perhaps there was more to this problem. Anyway, I thank our government, our professionals – for recognizing the need for special education, although I know there’s much to be done. And just now, reading your article, I am thankful that we did not have to sacrifice so much to make sure our son has the right start to a bright future. I also love to read a guy’s point of view on this issue. I can go on and on but I’ll stop here. 🙂

    • Stuart Duncan August 16, 2010 at 12:17 pm #

      Yeah, at first we started making good progress with the school board and we also made good progress on Cameron’s development unfortunately (how sad is it that I say unfortunately to that?).
      As Cameron’s speech improved, his communication skills improved, his motor skills improved… the promise of proper help in the class room got further and further away.
      As strange as it sounds, an early diagnosis (2.5 years old) and good progress on his skills ended up being our downfall in the battle to get schooling assistance.
      And so, when it came time to start the school year, he’d be going in just like any other child would. We were left with the choice of letting him do his best or holding back a year and trying some more when, at the last minute, we found the perfect school for him.
      Thanks for reading, I really appreciate it!

  2. Jennifer August 16, 2010 at 8:46 pm #

    We were moving out of an apartment (that we had to move into quick due to a former place having severe mold problems which that landlord refused to fix). The apartment was a bit on the pricey side for us having quite a bit of medical bill debt to pay off for all 3 of us, but it was spacious, new and they had a nice pool that our daughter (Asperger’s) loved to swim in.

    When we were searching for a new place, we looked at so many places I can’t even remember how many it was. It had to have no mold, a yard for our daughter to run around in, not too much traffic b/c she would just forget and walk into the street if distracted and we were aiming for the “good” school districts. The ones that were known by therapists and developmental docs to be “autism friendly.”

    We settled on our current place which is a duplex… half of a house. We paid for both our apartment and the new place because we had to extend our last lease month to month b/c we hadn’t found the RIGHT place. It has a small yard (not fenced) but the street is a loop so no cars really at all. The place is TINY. You don’t realize how much stuff you have until there is no freakin place to put it.

    Since we were renting both the apartment and the new place at the same time, AND Hubby was resigning his job and starting a new one that paid more (so we can pay for more care), our daughter got to visit the new place with me during the day quite a few times as I cleaned the place up and battled a mean ant problem…

    We ended up in a huge, rich school district. I didn’t know how they were with Autism but I thought that money might be a good thing… but HUGE could also be bad b/c she could get lost. I had an excellent meeting with the CSE and they were practically handing us services on a silver platter!

    Our move was all about her. Everything we do is. How or if we spend money and on what. Where we go or don’t go. She’s not spoiled, it’s just we need to do what is best for her and will help her have as happy and normal a life as possible.

    She starts Kindergarten in a few weeks. Maybe. We haven’t vaccinated since birth (another decision made w careful research) and I’m awaiting the ball to come back. The district is dragging their feet most likely on purpose. They don’t want us. We’ve given them another reason not to want us there besides the $ for Autism services.

    If our legal waiver doesn’t go through even after appeal, our daughter will get no services even if I homeschool. NOTHING from the district.

    Guess who will be moving again after only four months here…

  3. outoutout August 17, 2010 at 1:29 am #

    I think it’s wonderful that you were willing to step outside your comfort zone and make the sacrifices for your son. It sounds like Cameron is thriving as a result, and that’s fantastic!

    Our story is almost the opposite of yours – we were already living in a regional area of Australia and had considered moving back to Sydney, where there’s more services/support. However, we’ve discovered that there are some surprising benefits to being in this area: shorter waitlists, not having to drive long distances between each provider (they’re all in the same building), and we’re now working with an education advisor who is nothing short of awesome.

    Also, I think the small-town environment is really good for autistic people, particularly kids. I keep thinking about the differences between the world where I grew up & the world my kids live in today – seems like kids today are expected to process so much more information (24-hr TV channels, computers, mobile phones that do all that and more, etc). We really need less stimulation, not more. I know I get overwhelmed by all of the big-city sights and sounds.

    Sure, you may not have all the conveniences that other people have, but… as you say, it’s a sacrifice. Hopefully it’ll be worth it for ya in the long run. 🙂

  4. Candor Wit September 2, 2010 at 9:16 am #

    Wow. Kudos to you and your wife. I can’t imagine dropping everything, taking a loss on the sale of a home, and moving to a place you don’t want to be, the stress and craziness of it all… and you seem as grounded as any person could be.
    I know if I couldn’t get my child the proper supports I’d drop and move in a minute too. I wouldn’t think twice. It is great that you and your spouse are on the same page and agree to do whatever it takes for your children.
    Not everyone has that type of support system. With you two as parents, your child has the promise of opportunity for a wonderful life.

  5. Rhonda September 14, 2010 at 7:32 pm #

    I have to admire your journey. Thats exactly what its become.. our journeys. We’ve moved 14 times in 13 years. Most moves for treatments and doctors. We’ve now settled in Ohio (US) a move that took everything out of us. I didn’t think we’d survive. His behaviors (starting puberty) were getting so bad, i was actually looking at residential placements because things were so out of control. 4 years later, he’s doing great. I still hate Ohio.. husband LOATHES Ohio and cant wait to leave here.. but, as parents, we do what we need to do. And, most of us, will travel the ends of the earth to get there. Good for you.

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