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(originally written & published on March 10, 2014)
But this is something that’s been rolling around in my head for about a year and now I just need to write it down. More to talk it over with myself…so I understand why we make certain decisions with regards to Kyle and his schooling and his activities…
And I’ve come to two realizations…
REALIZATION #1) No, I’m Not Gonna Move Across The Country To Help My Autistic Kid…
At least once a week someone on my Autism Daddy Facebook Page or Blog will ask questions about Kyle’s school, do we like it?, etc and/or someone will send me links to these AMAZING schools that their kids go to and say I should check them out “my kid was just like Kyle but we moved across the country to get into this school and now my kid can do <fill in amazing accomplishment here>”
And I almost never respond. But I do click on the links and check the schools out and they look amazing.
So that got me thinking… Why are we not sending our kid to the absolute best school in the United States of America?
And I thought about it and here’s what I came up with….
We live in the suburbs outside of NYC. Kyle goes to a school that we are pretty darn happy with for a variety of different reasons…that I’ll definitely get into in a future post…Is it the perfect school for Kyle? No, but it works for us and for him and for where we are in our lives wright now…
But more important to us than school is…pretty much all of my big family and wifey’s big family live within a 60 mile radius of us.
And while we might not see them every day they are a huge support system to us.
So I guess because of that comfort level and support system we’re not prepared to move really far away to put our kid in the best school.
Now let me take that a step further. Kyle is almost 11. He needs constant 24/7 supervision and help with almost all daily living skills. Although we haven’t truly talked about it I think wifey and my plan is to have him live with us for as long as we are physically able to and then to probably place him into a group home or residential facility when we are old senior citizens.
So I think my thought process is if I thought that some amazing school we placed Kyle in tomorrow at the age of 11 could miraculously turn his life around and by the time he turned 18 we’d have a happy, talking, self sufficient young adult who’s ready to take on the world then we would leave our comfortable home and lives tomorrow and move to Antarctica if we had to.
Now this part might sound rough, but if I’m being honest with myself…if placing him in a better school across the country only means the chance that he’ll have the mental capacity of a 4 year old instead of a 2 year old but he’s still gonna live with us and be our responsibility for the rest of our lives and we won’t have our family, and friends, and lives that we’ve come to know and love around us… then I don’t think it’s worth it to upend all of our lives.
It all comes back to happiness & comfort level with us…
And I know what some of you are thinking… Ok, I get it… you won’t move across the country, but don’t you live near NYC? Aren’t some of the top autism schools in the world right in your backyard?
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REALIZATION #2 — I’m not going to take out a second & third mortgage and go broke getting my son into the top autism school in NYC.
Yes, we live relatively close to Manhattan. There are a few private autism schools in Manhattan that are supposed to be absolutely amazing. In a 2007 article one of them listed had a $73,000 tuition price tag per year.
But most of the parents don’t pay that. Ok, some of the really wealthy pay that. Those elite “1%” that we keep hearing about… They pay that $73,000…
But many of the other students at these private autism schools? Those parents pay lawyers maybe $15,000 to fight their city’s school district to prove that this $73k school is the most appropriate school for their kid. (Remember the laws say that your local school district doesn’t have to provide the “best” education for your kid, only one that is “appropriate”) And if the lawyer wins the case.the local school district pays the $73k.
So, no I’m not prepared to pay $73,000 per year to get my kid into the top autism school in NYC.
The $15k for a lawyer? Maybe I’d pay that if I knew it was a one time cost…and that my school district wasn’t going to fight to pull him back into district 3 years later and I’d need to lawyer up again…
But I’m not sure if I’d pay that $15k even once…because years back Kyle was in one of the best ABA schools in the country (for his pre-pre-K school year) and it was one of his worst years ever. He was miserable and regressed. Not the schools fault, not ABA’s fault, but it just showed me that the best school isn’t always the brightest outcome.
Now I know all this might make me sound heartless or a real cheapskate, especially when I write about the wife and I going out on date nights often.
I will admit that yes, I can be…I’ll call it… thrifty… but if I was convinced that spending $15,000 on a lawyer would bring about miraculous results in Kyle I’d spend it and fight to get into one of those Manhattan schools in a heartbeat… And if he got in, we would put our non-verbal kid on a long school-bus ride down to Manhattan every day where on any given day a typical NYC traffic jam could have him stuck on the bus for an extra 30-60 minutes…we’d do that…if we knew it would mean that maybe he’d be talking, and he’d have better receptive language and could tell us what’s bothering him…
And if I thought moving across the country into a great school in, I don’t know, South Dakota would bring about miraculous results, I’d quit my job tomorrow and live in a studio apartment and work at Kmart…but when I truly picture that in my mind… and I think about that great ABA school that he was miserable at…and I think “what if we were in South Dakota…all alone…away from our friends & family…away from our beloved NY…We love NY… Boy if Kyle was miserable in South Dakota I think the wife & I would be suicidal without our support system around…”
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That’s the thing… there’s no guarantees in life…and if he’s gonna be severely autistic and miserable and have meltdowns and tantrums let us be “home” near our friends and family.
But that’s the thing… for the most part Kyle is not miserable. He is pretty darn happy & content with our current life situation…it is the only one he has ever known…
And because he is so happy and content I think we will continue to happily live our “Groundhog Day” lives… (same job for me for 20 years, same house for 11 years, same car for 11 years, same school for 4 years, same weekend activities for 6 years…)
So I think what I’m saying is, at least for the time being… we’re gonna stick with what we’ve got. In the immortal words of Kenny Rogers “you gotta know when to hold them & know when to fold them”…
That’s not to say that we are “throwing in the towel” on our son’s development, but I think we are at a place where we want to work within the system that is available to us to find the most appropriate school for Kyle…and follow in the footsteps of the other autism parents that are in our circle of friends to learn about what’s out there that might help Kyle. Basically we feel we gotta live the life we want to live in the place we want to live with the people we want to be in our lives…
Maybe if we were different people…
If we grew up in a military family it might be completely different. We’d be used to moving around the country at the drop of a hat and we’d move to a new state and I’d get a new job just to try out a new school…
And obviously if the circumstances were different…
If Kyle had some incurable fatal disease we’d move heaven & earth and spare no expense to get him the treatment he needed and would move to Papua New Guinea to save his life…
But Kyle is almost 11 years old. He was diagnosed with autism before he was two. So we’ve been living this autism life for more than 9 years.
We’ve spent lots of money on lots of things that didn’t help over the years… I think I’m done spending big bucks on things that might help but will rip us all from our happy, content, “Groundhog Day” existence.
So that $15k I would’ve spent on a lawyer to get him into the best autism school in Manhattan where he might’ve made some decent progress or he might’ve been absolutely miserable?
I’ll use that $15k to continue to pay for all the things I probably would’ve had to cut if we spent that $15k on the lawyer…
I’ll use some of that $15k for Kyle’s weekend activities, music on Sat, swim on Sat & Sun. I’ll use some of that $15k to pay for his OT sessions that I pay out of pocket for. I’ll use some of that $15k to replace his iPad every 18 months when he breaks it. I’ll use some of that $15k to buy another backyard trampoline for him since the old one has been buried under the weight of two feet of snow all winter. I’ll use some of that $15k so that we can continue to go away to our upstate NY lake vacations that Kyle loves so much…
And yes, selfish me… I’ll use some of that $15k so that wifey and I can go out on date nights, out to dinner, movies, hopefully even Billy Joel at MSG at some point this year….
So there you go… I wrote this almost as much to convince myself that we’re doing the right thing here…and I may not have convinced you all… but I really did convince myself. 🙂
Kyle is happy and content… Wifey and I are living where we want to live surrounded by the people we want around us… and we’ve got $15k to spend on all sorts of fun stuff…rather than going in a lawyers pocket!
Win-Win!
That’s it… OVER AND OUT… So much more I wanted to write… including how, now that he has somewhat “severe” epilepsy on top of his autism it’s kinda made our decisions about staying put…and sticking with what we’ve got on the autism front even easier to make… but I’ve been rambling in this post…
So I’m gonna end it here…
Hope this made sense to some of you…some of you new autism parents probably think I’m crazy… and I get that… but some of you autism parents who’ve been in the A game for 10+ years I hope some of you get where I’m coming from…
OK…
THE END!!
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If you’re gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20 This way I can make a little money to help pay for my son’s after school & weekend therapies. This blogging thing has been awesome & life changing for me… but I must admit that it’s taking up a lot more time than I ever thought… so if I can make a few bucks it’ll make it easier for me to justify….Love you all! Thanks!!
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View Comments
I get it!!!
You've got it right! Don't ever leave your support system! We did and it's a nightmare! Family and friends that you can rely on are worth their weight in gold!
I'm there with you. I have moved across the country (because we had to for my husband's job). My son was very interested in doing it to be closer to grandparents, snow, etc.. It was HARD. And we moved to a school district that was 1,000 times more supportive than our previous one. He still had such a hard time with the change. I told my husband, I hope you like this house, because we aren't doing this to him again.
You made the right choice :) anyone who disagrees is not in your position. I'd make the same choice given your circumstances.
AD~ I applaud you for following your gut instincts! However, I caution you to begin planning/researching residential placements before you are old senior citizens. We've been navigating the process for the past 8 years--the last two in 'crisis' mode~~and just now have succeeded in finding a placement in a group home that specializes in residents with autism. We will be able to bring our son home on weekends, on vacations, etc., but will also have the peace of mind, knowing that we've done all we could for him, and now he will begin what we call "Autism College". Our hope is that he will flourish and be challenged with the day programs and workshops available to him, and that we can finally exhale. It's not that we don't love him~we ADORE him with every fiber of our beings~but we need to let him find his own place while we are still young enough to support him in his transition. I know we've made the right decision for us, and you have to make the best decision for Kyle. Don't let anyone judge you for your choices~there's no way anyone can walk in your shoes, as they are an exclusive design, a one-of-a-kind pair, made just for you.
You're correct, don't leave it until last minute if you really think he'll need residential placement. The waiting list for these places are VERY long & it takes years (usually) to get them in. You can probably put it off a few more years but I wouldn't wait until you're seniors!
Your post was very well thought out and I'm glad that you've found the best decision for your family. To these two responses...great suggestions! Start thinking about the future and looking at the transition services that will be available to you. The school system and local agencies/state should have resources to help you with this. Adult day care programs, workshops, respite care, etc. There are many wonderful programs out there. Though things may change over the years you will need this head start because time flies, especially in a groundhog day world! Perhaps you've already started! Just like early intervention services...the earlier you start transition services, the goal is that it will be smoother for your child and for your family.
This is helpful info for us! Thank you for this as we think about what's next for my 14 year old ...
very well said,,, but for others reading.... if you fight to get into a school ,, and win,,, your attorneys fees are reimbursed.....
I agree! These families who uproot everything they have known for a"maybe" are crazy. Always chasing the next best thing. Autism is not a a life or death thing no need to chase for a maybe!
I get it and my son was only diagnosed a month ago. Not saying that im not going to do what I can for him but I totally get it. Ti would love to move back to Alabama where all my family is but being three hours away isn't terrible and my son has some pretty good drs here in GA so we'll just stay right where we're at.
Think it makes complete sense!
I really get it just rock on mine is 12 and we are surrounded by family and friends so we will also stay living the autism life with our supporters