Monday, March 10, 2014

No, I'm Not Gonna Move Across The Country To Help My Autistic Kid...








(originally written & published on March 10, 2014)



Again this might not be a popular post and will probably look like a selfish jerk to many.

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...

Ok here goes...


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?

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..."

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 link above?  This way I can make a little money.  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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81 comments:

  1. 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!

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  2. 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.

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  3. You made the right choice :) anyone who disagrees is not in your position. I'd make the same choice given your circumstances.

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  4. 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.

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    1. 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!

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    2. 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.

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    3. This is helpful info for us! Thank you for this as we think about what's next for my 14 year old ...

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  5. very well said,,, but for others reading.... if you fight to get into a school ,, and win,,, your attorneys fees are reimbursed.....

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  6. 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!

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  7. 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.

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  8. 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

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  9. Absolutely agreed!!! I think we all think that theres always something more, someplace better, blah blah blah. You gotta do what you gotta do.

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  10. you know i feel the same way with my Travis. He is so happy at school there are children that help him and make sure he gets on the right bus. Travis has OT PT speech and other therapy. And they have done wonderful in helping him cope with this nightmare. There is no way i would move anywhere because he gets more from his friends than anywhere i could send him. There isn't a person in the school and High school that doesn't love Travis and protect him so what more can i ask for.. He will always have this problem and he has great teacher that have helped him deal and understand why he is different. And that is worth more than any 73k school can ever offer. If you are curious what is the name of the fantastic school it's name is Marionville R9 Marionville MO.

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  11. I've only been traveling this Autism Journey for about 2.5 years, but I totally get it and agree completely! We only have maybe 3-4 people here in our support system, we don't get "date nights", and our daughter is only in pre-k right npw; but I still would rather stay here in our own version of "Groundhog's Day" than risk her even maybe being miserable w no way to easily go back to "home"... The evil we know vs the evil we don't... or rather, The good we know vs the possible good/evil we don't...

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  12. I get it. I have family in Northern Illinois, including my daughter's dad. There are some great programs up there. My daughter spends her summers there. But my mom and sister and brother are here in Texas, most of my friends are here in Texas. My daughter is currently in an amazing school that isn't the highest rated but has been really helpful. Her doctors are fantastic and after trying to find a good doctor for so long, I don't want to go through that process again. Sometimes you stay where it's the best fit for you and your family :)

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  13. This is what I tell people when the question where we choose to school our son. It works, he loves it, he is the best he can be where he is. Could he be better somewhere else? Maybe, but with kids like ours that maybe is like crossing the Grand Canyon with no net. It's not worth it. Being happy, having a group that "gets" your kid is infinitely more important than taking a chance bet on the "best"

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  14. Cindy Birch Schaeffer (from Facebook)March 10, 2014 at 5:47 PM

    As a Support system person... Aka: A grandma of a 8yr girl Whom is in same boat with Kyle on a different pier so to say. It would kill me for her to move that far away... Thought that her parents may decide that some day scares the pants off me. She in my home every other weekend.. and 2 weeks in summer.. I may not be mom or dad but I'm a big part of her life.. Taking extended family out picture would really be a Big mistake.. So I get ya

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  15. Hear! hear!! Way to go Dad!!!!

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  16. Makes complete sense! Very well said!

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  17. Amen!! I get told the same thing all the time and you know what I share the same feelings.
    Happiness works

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  18. Damn right!
    I have no support system at all since my mum died and my kids father decided class A's were more important than his kids. I would never leave my family if I had one - doing.it alone crap!
    And I think date nights make for better parents.

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    1. No support system here. My wife and I are both immigrants. Our son with autism was born here. We have no relatives or grandparents, its hard but we do our best. I envy all of you with support and family. :|

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  19. I get it. I have 3 boys, 2 with autism. I decided to leave my small island of Puerto Rico almost 3 years ago. I'm by myself, no support system at all. Almost pulling my hair out when I'm home but really satisfied with their improvement so I don't mind the change but only one thing I know I'm not returning to a mediocre environment where they were.

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  20. Omgoodness yes!!!! And I have started totally feeling like a vet in year 13.

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  21. My son is 21, nonverbal, severe behaviors ...I get it. Do what you need to do for your family and don't worry about what other people think

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  22. yup, I agree with you. Each situation is differant though. I'm currently in a county that doesn't have a clue when it comes to autism. I am looking to move in the next year or so. Just tired of dealing with educated people who are lost when dealing with some of my daughters issues. I will be doing some serous research before moving.

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  23. I am just a grandma. I am not the decision maker or the researcher or the fighter that my daughter has been for my 5 year old grandson with autism (she has 2 other small children as well). I am not the parent who carries the weight on their shoulders. However, my husband works nearly 1400 kms away ( where the money is better) so that I can stay here, in town and help with our grandkids. I only see him once every 2 weeks. I see the kids every day and travel with them the half hour it takes to drive them to school (then another half hour back into town), then go back and travel home with them afterwards. I am just an extra set of hands and a support for my daughter. I am the one the kids stay with when a baby sitter is needed or wanted and the kids are extremely comfortable in our house. I stand in complete awe of my daughter and how she manages her family and the always present, often chaotic, focal point of autism. In no way at all do I take credit for one single thing she has accomplished. I do though, think that she is thankful to have a strong support system and would miss it very much if they lived elsewhere. I would sure miss them.

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    1. You are more that just a grandma. You are a pillar of support for your daughter and grandchildren and the source of unconditional love. What a wonderful gift you are to them!

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  24. I was just talking about this very subject yesterday! I have other children also and I know my autistic son is happy and I would have to uproot my other children as well just to see if it would help and in the end I think we are all happy and we are going to stay right where we are unless some amazing guarantee comes about that my son will talk and be able to function in this world all by himself but in reality that's probably not going to happen. I am so glad you wrote this! You almost took the words right out of my mouth! Thank you!

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  25. I would just like to let you know AD - you are a legend!! And I'm sure that you are Kyle's hero in his heart! Whatever it takes to make his life that little bit happier is all that needs to be done!! I applaud your reasoning and smile at your logic. Best wishes to you and your amazing family.. x

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  28. I call our lives the eternal ground hog day.

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  29. You are a rockin' amazing father and husband (please, please keep nurturing that #1 relationship in your life!), and don't ever let anyone tell you otherwise. Period.

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  30. I think you are lucky to have the support system that you do. No one at all knows your child the way that you and your wife do. You have told us in your blog numerous times that Kyle's very severely autistic. We have read your story, read about your trials and tribulations with treatments (I am sure that there are many more you didn't share). You know what Kyle is capable of...and realistic about what he's not capable of.
    My oldest is mildly autistic. I've known since he was 2 (he's 20 now) that he was never going to be a doctor or a lawyer. I had to go into his guidance counselor's office when he was in high school to tell them to lay off the college spiel for my kid. When he tried stressing to me how important college is, I explained that, in this case, it is a waste of money. He told me I was being very pessimistic. I explained I was not being pessimistic, I was being pragmatic. My kid? He's cut out for learning a trade. Something like welding. Maybe a mechanic. He starts trade school in the fall.
    The whole point of this is that you and your wife alone know exactly what will or will not work with Kyle. No one else, least of all someone from the internet, gets an opinion.
    For the record, I think this is a realistic post and in no way, shape, or form makes you look jerky. :)

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    1. Maybe some autistic are more trade suited, but some do go to college. Everyone's different, so I see your side but want to show the other side as well. Temple Grandin had college. I was diagnosed with Asperger's at 4 and many Aspies or high-functioning autistic do go to college. I got an AAS in computers. Not all typical people can do college. Some people are book smart and some are intelligent in other areas, like spatial or kinesthetic.

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  31. We have moved several times to find a school where our son was happy. Is it the best? Nope. It's a public school in a tiny town, but he's doing the best he's ever done and for the first time, completely happy. You can't put a price on that.

    And we're of the same mind as your family: why spend huge amounts of money on a 'what if' when things are working in the here and now?

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  33. The support system is everything. It allows you to be happier parents, resulting in a happier child. You made a decision that is best for everyone in your family. Not selfish at all!

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  34. YES!!!! This post hit home. I totally get what you are saying. The same can be said for all these therapies that people say will make our kids rock stars.Maybe they will.. Key wordz: maybe.

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  35. Yup. That is the raw reality, when an autism parent looks twenty-plus years into the future. Even high functioning is not a guarantee of self-sufficient.

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  36. Been in this game for 12 years now. Son also severe, also requires 24/7 supervision & care. He still can't even wipe himself, brush his own teeth, wash his hair (or body)...the list goes one. He will also run out in front of a moving car without a second thought. 24/7. I hear ya loud & clear!!

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  37. We did move across our country for better services and in our case it was the right decision, but it is not for everyone. In our case though, the differences were so stark we could not pass up the opportunity. Night and day schools and support contracts worth north of $90,000/yr for therapy and respite and help. We left our families, and I miss them, but I would do it again in a heartbeat. Extended family can only do so much and the reality is as grandparents age and children get bigger, they just can't help as much, and in the worse cases parents must care for both. We are very thankful for the services we get, but we would not get them if we hadn't moved.

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  38. Your thoughts and actions make you a realist. We have a 21 year old autistic son. We have had those same discussions. We also plan to keep him with us as long as possible. I agree with just about everything you talk about. I have just one thought for you. We are on a waiting list for a residential facility. Now our thoughts were to wait til we couldn't care for him as well, however our case coordinator gave us something to think about. If something happens to both of us, then the state or agency will place them anywhere it is convenient. Where as, if his name comes up before we are actually ready for him to go we can look at the best placement for him. At least where we are at, if we find a place we want him to be and there is no openings we would get to keep him with us longer and would be happy with where we knew he would end up. Thanks for your stories, we have lived a lot of them already, but it's nice to hear we aren't the only ones going through this. Thanks Jim

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  39. We get it! Been there & done that!

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  40. As a school based OT and a parent of a child w special needs (tho not autism) I highly respect your decision and your willingness to share it.

    I also appreciate you sharing your story. It helps me understand my students and their families more and gives me perspective on my own child's journey.

    You can't underestimate the critical support a community (family, neighbors, friends, and yes- loving school personnel) provide in your home community. You are blessed to have all that.

    Is there such thing as a perfect school? If you have a good working relationship with your district, they care for and are working hard for Kyle, and you are satisfied with that- well then you are better off then many families.

    Best to you.

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  41. Dude. I'm a relative newbie . . . oldest son dx'd in January 2013 . . . but I'm with you. Actually, I'm getting a lot, and I mean A LOT of heat for choosing to homeschool our very verbal ASD dude. We've made drastic dietary changes, loads of supplements (we're on a biomed protocol with our ND), done some home-based sensory therapies, and holy crapola they're working.
    But I get it. Everyone knows better than you do what you should do for your child, even though they've never "lived it".
    Keep on keepin' on, man. Rock it for your little man, and keep loving on your wife. Keeping your marriage a top priority is one of the best things you can do for your family (and I get heat for doing that same thing--putting my hubby high on my list of priorities, and not dropping *everything* to be "The Autism Family".).
    God bless,
    Allie in MN

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  42. This might be even more controversial than your blog post. I live in an area, and have lived here long before I had a son diagnosed with ASD, with the best services in the country for people with disabilities, especially for kids under 6. I live in the city in the area with the best specialty schools and options for kids with ASD and other disabilities. We have families flocking here for these services (it is Canada so a majority is government funded) and it is really straining our system. I understand 100% why they are moving, but the waiting lists for diagnosis, funding, admissions into schools for our kids that best meet their needs are huge, and growing by the day. People with "less severe" problems have lost funding that they should be receiving, because there are so many "new" kids asking for funding. The system will fail at some point, and I don't know that it is too far off. This probably sounds callous and b****y, but it is the other side of the coin of moving across the country for better services.

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  43. Keeping it real, love your work!

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  44. Such a raw honest post. I totally get it. Never leave a fantastic support system. We stayed put in Florida where services are awful and have been on a waiting list for almost 14 years. In the meantime, we did what we needed to do with the help of friends and family. Logan would not be where he is today without them.

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  45. Makes perfect sense to me! Especially the part about being with your family who are a wonderful support system for the three of you!

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  46. I think you ARE doing what is best for him. You are also doing what is best for you and your wife and your family as a whole. If you guys don't stay happy/fulfilled in your lives it ultimately takes away from what you can give him. You have to nourish the whole to make it work. And the biggest and best point you made in all of this? His HAPPINESS is what matters most. His contentment and comfort in his life. We actually did move across country for our child's medical care, but ultimately moved again back to our home town. I don't think it was a mistake (it was something we needed to do at the time), but it wreaked havoc on hubby and me and we almost didn't make it as a couple as a result. Now that we're working on US as much as on helping Abbi to have a fulfilling and happy life, we are ALL doing better, even if we aren't living in the "hub" for Autism anymore.

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  47. It works for us and him and where we are in our lives right now. Enough said AD. We spend so much of our lives questioning our decisions that sometimes we forget just to be. Another good posting. Much respext to you and family :-)

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  48. Ditto. Same feeling we have at our home. Ones support system is huge - I completely understand.

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  49. We moved 30+ miles away from our support system 5 years ago, my brother has both P and L disabilities, we needed to move to an apdated home, then he got ill and ended up woth more moderate autism, we dont have much of a support system here, when my brother had surgery and recieved nerve damaged for 7 months we travelled back and forth 60 mile journey each day, we need a support system more then ever, we waiting for a bungalow as in meltdown or urget situation he cannot get up his stairlift. We were making a go of living away from friends and family, but needs changed for the worse and suppprt was needed and we could not get that. AD, your doing what you know is best for Kyle, support system for you both and your wife is key to trying to cope a little, never let those who bombard you with ""our school or this school is better get to you, each child is different and has dofferent levels of autism, my brother has Ocd,tourettes, autism, additional behaviour issues, eating problems etc from one coniditon that worsens each time he has an infection ()ie throat) friends and family can only say so much in texts and phone calls, but sitting with you while the 5 +hour meltdowns happen is amazing and often a great weight off our shoulders just for even 5 minutes.

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  50. You are doing a fantastic job as a father ,teacher and friend !!!!!

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  51. I'm a new Autism parent from the North of England (still waiting for diagnosis after 2 years for our non-verbal 4 year old Daughter) and I can totally see where you are coming from. You do what you think is right for your family, there is no need to feel guilty or feel like you need to justify yourself to anyone ;-)

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  52. Agree totally! Not willing to leave my family. I live in Florida too - no one with autism should ever actually move here to get services you will be sorely disappointed. The one perk is the beaches and theme parks which my son loves!

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    1. I'm from Miami with 2 ASD kids...see my post below...

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  53. Some people do not realize how important family and friends are in the scheme of things. I agree with your post I totally understand where you are coming from! Hoping to see Billy Joel at MSG sometime too.

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  54. I understand what you are saying... But the system doesn't work that way with the schools. Have you actually looked into it? There are a lot of common myths about this, even qmong ASD parents an# researchers. I say this as an advocate of a severly autistic and mentally retarded 18 year old. Also, you may be able to get home health specialists. There are a lot more things out there that are harder to find but exist. As far as the school goes, that is not how it works, usually it does not come to a lawsuit against the school, simply paperwork and a meeting. The schools know what will happen and if he is severe they wont deny that fact and no court or school board battle will happen. Be prepared for the day when your current ground hog day comes to an abrupt end and you will be forced to make a change. My little guy, around age 13 became suddenly very aggressive and violient. I hope this never happens to you, but Im sure you already realize everything can change in an instant. Which brings up, again i hope you never deal with this, the fact that you may have to place him sooner than you thought. You do not sound selfish to me, you are realistic. Parents with typical children say Id move heaven and earth... parents with. ASD children say I can hardly move lol. You and wifey know best of course. I hope I didnt sound rude and I'm sure you will handle every situation in the best way for your family :)

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  55. I completely get where you are coming from and we've been through the same sort of thing. Remember, I have two kids with autism. One is 13 and is verbal. Is he high functioning? I don't know. My 9 year old is the one we've had the most "Kyle-like" issues with. We've even gone down to Argentina to get a totally different perspective. They do things different there and I'm glad we have spent the months down there to learn what they do and we have incorporated their things in our home. We live in Miami. I'm not latina but I am a native "gringo". I can't stand this town...wish we could move, but it's home. I could take your blog posting and just change the names. We aren't going anywhere either. The public school system works for them. I've been all over and seen a whole bunch of "autism schools" and frankly...it's that "if it ain't broke don't fix it" thing. My 13 year old starts high school in August. He's going to be in what looks like a great program and he transitions pretty well. But still...who knows? Thanks for a great posting! Enjoy those dates. I know I couldn't survive without them.

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  56. Thank you for writing this. I have 2 dd, 8 and 10. My 10yo is undiagnosed (not for lack of trying), most like Angelman's, sort-of. We were living in L.A. until 3 years ago. My special daughter was in a wonderful school, with great teachers and a GREAT after-schoool, summer, etc program for her. She was happy but we were not happy in our lives there. We have/had a wonderful life with friends in New Orleans, which is not known for its schools, typical or special. We looked at the big picture and realized this beautiful, happy girl, was happy because she was surrounded by love. Her happiness was a byproduct of everything in her life, not just her school. So we decided the happiness of the entire family and the well-being of everyone involved required us to relocate back to New Orleans. She is happy, we are happy. Her school will never been the subject of a top school article but she is safe, happy, and protected while the rest of the family gets to pursue our own happiness. Which, in the long run, is absolutely the best option for my daughter!

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  57. 1) If people want to get technical about Autism what is drilled into our heads about Autism ? Routine,routine, routine. 2) You have a support system that you guys are comfortable with and people you trust and he trusts. And that is hard to do regardless of anything. 3) You guys have set the foundation of love and he knows that. It's apparent <~~~~ funny that word has the word parent in it =)...in the pics,posts and anyone who understands. I have a great support system where I live and my daughter and am lucky enough to live where she can go to a special needs public school. Is it amazing ? Some days yes and some days no. Does everyone have an opinoin of what's best for my daughter ? Yup, but guess what I know what's best when it comes down to it no one and I mean no one not the professionals not the doctors only you can decide what's best for your child. Thank for showing the real of it. Take care and God Bless

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  58. I can not begin to say I understand what your wife and you are going through, but I get it. You are doing what is best for your child, no matter the situation, no matter the money, You are doing the best for him, making him happy, making him comfortable and it is not selfish for you to have a date night or go to the movies with your wife. Its a treat that you deserve and you work hard for it. I am sure that 23 out of the 24 hours on the day are spent thinking about how you can make Kyles life better and to ensure that he is happy. I commend you and am fortunate enough to have read a few of your posts that opens my eyes just a tad bit wider to the struggles that are out of our control each day. I wish you a happy day and a fabulous week. You make your childs life smile brighter each day cause he knows just how much you love him by your actions. No words required =)

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  59. Only you know what is best for Kyle and your family. To many armchair quarterbacks out there.

    Be strong and best wishes from this Autism Father to you.

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  60. If you are looking for the best schools for your children, you have several resources to check out. Whether you plan to send your kids to a public, private, or charter school, you should take a look at the ratings and reviews given to local options. Find out where to learn the information you need in order to make a good decision.

    Find a School in Australia

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  61. Well said my friend.. "if it works ..why try to change it".. AD I thank you for your rants! :) it helps me know that im not alone. We as parents are going through an emotional rollercoaster everyday it never ends..it will never end. So when we find the something that makes everyone happy why change it..I say if this is working for you and the wifey ..thats awesome. -veronica

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  62. You are spot on Autism Daddy. We don't have an extended family but if I did I would stay in place. Building a network and using the resources you have are invaluable given that there is no other real assistance. We live in Florida and there simply is no real functional social services system. Even less for autism. We thought of moving to a state with some benefits and maybe a group home. I'm an RN and my wife a Respiratory Therapist. I did the numbers and we would have a net LOSS of income almost anywhere we moved. I decided to start a non-profit farmstead where our adult autistic girl (now 19) could live with 15 other autistic adults in safety. They will also have purposeful work and the farm will provide a sustainable income after the initial purchase of the ground, buildings and equipment. You aren't alone and there is a solution that isn't out of anyone's pocket: www.kb2farms.org

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  63. This is the article that he was reading that mentioned the $73,000 tution!

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  64. This is the article that he was reading that mentioned the $73,000 tuition http://nymag.com/news/features/23172/

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  65. Thank you for your frank and honest discussions.. I work in the Special Needs community and one of my biggest complaints is the "rosy picture" allot of parents and even therapists/teachers want to paint. I don't think its fair to the student or the families who are in the trenches, I know FULL well that I get to go home after my time with these awesome students but its the parents who are REALLY the un-sung hero's...

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  66. You hit the nail on the head! Without a strong support system of family, raising kids with special needs is an exercise is emotional suicide sometimes. Sorry if that sounds harsh, but I know I, and most of my SN parent peers, rely heavily on our families for support, for respite, for our sanity. Nothing is worth giving that up, for me OR for my kids.

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  67. Sometimes parents are unfortunate enough to have been born into families that refuse to function as any kind of support system. Ever and in any capacity. I wish we had relatives interested in being a part of our lives, giving us a hand once in a while. Only in my dreams! We moved across Canada, from Quebec to Alberta, in order to find the only support system available to us - government funding. I don't know where I'd be without the funding for services and respite that Alberta gives us. We seem to be in a minority as most autism families have families who are willing to help, even provide babysitting! Let's not knock down parents who do move, so that they also can have a support system. Raising an autism child without family support is a nightmare. Thank goodness for governments who provide what some families don't.

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  68. The support system is supreme. We do have family local, but no one seems willing to baby sit or help. We are fortunate that the youngest's daycare has a parents night out once a month. You are making the best decision for your family!

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  69. I am in complete agree ment with you if it doesn't work for the family it cant be don

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  70. I couldn't agree more. I'm tired of people saying change schools, change districts, move here, move there. I wish it was that easy, it's not.

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  71. Great post AD, I loved it!!! ;)

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