Tag Archives | sacrifice

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.

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Their Routine Becomes Your Routine, Their Diet Becomes Your Diet, Their Life Becomes Your Life. Welcome To Life With A Child With Autism

It’s a bit of a long title but it gets the point across. When you have a child with Autism, you quickly find that certain diets will or won’t work, you quickly learn that having a stable routine is essential to not just getting things accomplished but for the sanity of your child and yourself. These things work best when you not only impose them on your newly diagnosed child but also when you work them into your own life and that of your whole family.

When you have a child with Autism, or any real disorder/disease/disability, you quickly find that your life changes so much more than what your family and friends teased you about when they bugged you about getting little sleep or dirty diapers. Your life quickly becomes a juggling act of research, cooking, time management, doctor, advocate, psychiatrist and so much more. You look back and think to yourself how all those family and friends really had no idea how good they had it!

If you’re a single parent having to deal with Autism, I truly feel for you because from where I sit, I don’t even know how it would be possible to manage it… so kudos to you for doing it!

My wife and I tag team it, that is to say that she does 90% and I do 10%… maybe I’m a bit unfair in being modest but it’s not far off, but even if 10% is all I could contribute, I know it’s an important 10%.

This is a short glimpse of how it is in my house, perhaps some of you can relate, perhaps some of you are looking forward to something similar, perhaps some of you are just interested.

If the day were to start at midnight, then I’d be the one on call, getting up with Cameron when he can’t sleep, or has nightmares or gets thirsty. Why does he get thirsty over night? Well, because he doesn’t eat… we’ll get to that later in the day though.

Then I get up at 5am on school days or 6am in the summer (because we let him stay up later in the summer) and handle the mornings with him. This means either scrambled eggs or bananas with peanut butter for breakfast, more soy milk to drink and we sit on the couch watching a movie while we struggle to wake up. We play and watch stuff and do stuff until 9am when my wife Natalie gets up and takes over.

See, Natalie has Fibromyalgia which means that she needs 2 things to function, sleep and exercise. So I handle the nights and mornings… and the fact that I work from home means that she can sleep until I start work since I have no commute or anything. However, this means I generally get no breaks between waking up early, doing stuff all morning and starting work.

So I work while Natalie deals with both boys all day, all the while cleaning, cooking, educating them when she can, taking them to the park or even shopping and more importantly, to Cameron’s therapy appointments.

You see, she doesn’t even drop off the boys anywhere, especially Cameron. She stays with him to ensure that the ‘experts’ don’t do anything that might cause our son to regress (because even they don’t know the cans and can’ts for all Autistic children until they get to know them) and she also soaks in all they teach, learning it all and bringing home reading material when ever she can.

Meals generally consist of what ever Cameron can eat which means rice, eggs, brown rice pasta, bananas, corn and peas… beyond that, there’s not too much. So we’ll usually be eating something that fits that. This means that we may have some meat and things extra that he doesn’t have but generally his diet dictates our diet.

Come supper time, I’m done work and we all sit down for a family dinner which is to say, 3 of us sit there while Cameron runs around the house playing and coming back for bites from time to time. If he’s overwhelmed or had a rough day, chances are he won’t even eat at all, much less come back for bites. If it’s not something he wants, he simply won’t eat. Again, our meal generally fits his diet. When all is done, either we play together for a bit or we all go to the beach where Natalie goes for a run around the lake and I take the boys swimming. Again, exercise is important for her and swimming is very beneficial for Cameron… and just plain fun for both boys.

From there we return home and I give the boys a bath… another downside to my wife’s Fibromyalgia is that she can’t be hunched over the tub or wrestling with wet boys all that well.

We enjoy another movie or tv program, some quiet time and then I put the boys to bed where I read them a story, get them a drink and tuck them in.

Then I go back to either watch a movie with Natalie for some much needed quiet time or, as most often happens, I sit down to do even more work. You see, the therapies and gluten free foods and trips to the city for things like test and such, they leave us living paycheck to paycheck, or worse in many cases… which means that I need to work that much more.

Also, my wife has even started working a little as well, doing some evenings and part time work here at home as well.

We’re both extremely lucky that we can work from home, because commute times would kill us, doing things separately/individually would kill us…. we wouldn’t be able to cope quite as well anyway.

Then around 11 or midnight, I’m back to bed to start it all over again. No days off, no day cares, no babysitters, no rests or breaks. It’s the routine, it’s the diet, it’s the life.

I kind of skimmed over my wife, Natalie’s, part but truly it is the 90% to my 10%…. she takes him to all of his appointments, she deals with all of his meltdowns through out the day, all his fighting with his little brother, does all the meal preparations which often includes 3 different types of meals from mushy processed slop for Cameron (to mix up and hide things such as meats in his meals) to solid pieces for my toddler who likes to use his fingers and then a ‘normal’ meal for she and I. She learns all of the methods and processes for treatments and also learns of the products and toys and devices which aid in helping him write, deal with his senses and so forth… she handles them out and about doing groceries and walks and such…

Every little thing you could do that sounds like a chore when you have a child becomes a very real challenging task when you add in Autism.

You can’t deny the complexity and you can’t deny the struggles that all of us feel every single day. But if you don’t adapt and learn when to make your child’s life a part of yours and to sacrifice and make your life a part of your child’s, then it can be down right impossible.

It’s even more difficult to explain it to friends and family around you who think you’re strange or even down right mean that you don’t take your child to a county fair, or late movie when they want you to just up and join them… if it doesn’t fit the routine, if it doesn’t fit their sensory and social needs, if there is no food for them to eat….  you simply can’t do it. And while they may never understand, you stay home and you keep your kids home… even when they are judging you for it.

Because as much as having a child can be a life changing experience…  their life is now your life.

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The Balance Between Work and Family Time

Balancing family time with your work can be a challenge for just about any family but when you have special needs children and find yourself struggling to make it to the next pay check every single month… it becomes less of a challenge so much as a losing battle.

I am a web developer, which essentially means that I write code that makes a website work… not the design, but the functionality of it. As such, I do get the luxury of working from home but that doesn’t mean I get any extra time with my family. Quite the opposite really, for the most part. I tend to do my 9-5 like most everyone else does, and then I eat supper and end up with the same decision every single night… do I get in extra work in the evening so that we can afford groceries or do I spend time with the family after supper? I find myself having to sacrifice family time so that I can get extra work in so that I can make ends meet.

It gets especially painful when I buckle my kids into the van and my 2 year old says “Dad, you coming with us?” and I have to say “no, you guys are going swimming without me today… daddy has to work.”

Natalie (my wife) often gets upset that I’m not spending enough time with her and the boys, my 2 year old often gets upset when I leave… for example, Sunday mornings are supposed to be my day to sleep in, but he absolutely will not allow his mom to get up with him. It has to be me. And he’ll cry the entire time that I’m not up. We know that it’s because he doesn’t get enough time with me.

It’s really hard on them, it’s really hard on me. I have people asking me to do work for them all the time, and when I see a chance at extra income, I just have to take it… having to figure out how to stretch $20 for a week until the next paycheck gets pretty old pretty fast.

It’s great that there are charities out there funding research and setting up programs to help our children learn and grow… because there’s no way I could afford that stuff. I don’t think it should be up to them to help us out just so that I can spend more time not working, but at the same time, I really think that we (and by we, I mean all families with special needs children) could really use some extra help sometimes.

I really love my family time, I just wish I could get more of it.

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