Warning: major venting ahead.

So Matt spent seven hours at a restaurant drinking with his mom and telling her of our plans to move to Vermont. Of course, he also mentioned that it's his dream to move to Alaska, and it sounded like his mom was more encouraging of that than of us moving to Vermont. He said that she doesn't think that treatment for Jacob should drive our family's plans. And he said that all of it was said in a benevolent, trying to help kind of way, nonjudgmental and all that. Which is good, and I love and respect her for that.

But here's the thing. I started getting really frustrated with Matt, because I really feel it is important for Jake to get a couple of years of intensive intervention. Everyone seems to think he's just going to magically be fine, and they don't see all the hard work, research, and hours of therapy that I do with and for him. They don't see that *why* he's doing so well is because he's had intervention. And that more intensive intervention is going to make an even bigger difference for him. I explained that it's like when FIL had prostate cancer, if in Florida there was a half-hearted, outdated treatment plan and no other available, but in Vermont there was a full-blown, best-practices, known and proven treatment available. And the family said, "sorry but it's just not right for us to drop all our plans and move to Vermont, it's just too inconvenient. You'll have to take the second-rate treatment."

The assumptions that MIL (and my brother and probably everyone else in my family) are going on are:

• that there are just as good treatments here if we just "worked at finding them"
  
• that "he is doing great and will end up nonimpaired" sometime down the line - as an adolescent? adult?
  
• that he is just naturally "getting better" and that the treatments/school he has had haven't been doing anything
  
• and/or that the school he went to *is* the best in autism treatment
  
• and underneath that is an assumption that when you have a situation like we have with Jacob, you don't move to find better options, you simply make do with what you have
  

and probably others that I am too mad to think of right now.

and i was so mad that i wrote this email to matt's mom, and i think i will send it:

hi libby,

i'm glad you and matt had a chance to talk today. i got the impression that you are supportive of our plans and i appreciate that. i got the impression that you are supportive of our plans and i appreciate that. matt gave me a brief rundown of some of the things that you talked about and i'm emailing because i wanted to add some information that i'm not sure he had or has as much in-depth knowledge of as i do.

first, unfortunately, we can't quitclaim the deed back and have him qualify for SSI. they will automatically disqualify him for 36 months if we try to give away an asset or sell it for under market value. others have tried this in the past and that's why the law is written as it is.

however we are considering forgoing the ssi (the advantage of vermont is that he can still have great healthcare coverage and autism treatment without it, all we lose is the monthly payment of $640/month or less depending on our income) and renting in vermont, and keeping the money in a money market account. or perhaps, as the mortgage here is still so low, we should rent this house and rent in vermont. all of these are still up in the air as possibilities once we moved out of the assumption that we had to sell the house here and buy a house there.

i am having a hard time as everyone in the family seems to minimize the importance of early intervention for jake - and time is critical for this, as the window closes in a year or two, in terms of catching up his development. princeton house is not the best practices in autism. it's overcrowded, too big classes and too few teachers, i can't get him individual speech therapy there or at home due to the princeton house distance and full-day schedule, and he gets so sick being in school full time with not enough teachers to keep other kids from, say, grabbing his cup and drinking out of it etc. i could go on about why it isn't an acceptable situation; there are many serious problems with the way the school is run, and it simply is not intensive enough. he needs one on one ABA for at least 20 hrs a week. i have tried very hard, and spent many many hours researching alternatives, but the lawton situation is far worse. the teacher isn't trained for autism, they don't want him there, they don't have the resources to provide him with the one on one therapy he needs. there are no other options. i have thoroughly and exhaustingly investigated them all.

i guess since the burden of all of the research on what will best help meet jacob's needs has fallen entirely on my shoulders, i feel that i should be trusted to know what is best for him. and i'm not accusing you of not trusting, i just feel like everyone around me thinks it's just a lot easier than it is to meet his needs, and doesn't know how many hours i have to put in just to get the paltry services he does have lined up, monitor them, research, and so on. vermont is unique in that it offers reasonable housing costs (not like NY or Mass or southern CA), clean air, good medical coverage, and great autism treatment all in one. please, please read this article - i just found it yesterday after coming to all these conclusions on my own:

http://www.womensfreedom.org/artic823.htm

the city we are looking at is the city she also moved to, montpelier - and the services we can expect for jake there are the same or very similar to what she describes. this could mean the difference between him living a full and independent life and living with us for all of it without an ability to hold a job or have meaningful relationships. he can get services in the home so that the CF isn't an issue (at least for a year until kids are a bit older and less in close contact with each other's snot and mouths, etc. - plus if he is out for a few days or weeks but in school the rest of the time they will send a home tutor to do therapy with him).

i know it looks like he is doing great, but that is only because of the intensive intervention he's received plus what we have supplemented at home. without it he stagnates. he will only do better with more intensive intervention - he hasn't even gotten a quarter of what he needs, and the strain caused by the drive and how sick he got last winter set him back. he should have been pretty well caught up on speech by now, and could have been if he had been in a program like they have in montpelier.

and although it's unfortunate that my mom is moving here right now, i *begged* her not to move here last year, because if princeton house didn't work out, we'd likely be moving to find him a better program. i told her that. i know she understands that waiting a year isn't an option - that it's a matter of jake's long-term development. i am confident that although she is disappointed, she understands that it is not about her. and i can honestly say that it is not about her. i am optimistic that despite the CF he has a long life ahead of him, and i want it to be as independent and high functioning as possible. i don't want to close down those options now.

i liken it to having cancer or some other disease. if you were diagnosed with cancer, and the only treatment in florida was an outdated treatment that was proven to be inferior to the current, most aggressive treatment, available in another state, would you stay in florida? this is absolutely true - the treatment available for him here for autism is absolutely outdated, underfunded, and worse than second-rate. it's one of the worst states in the US for autism treatment.

jake being able to get that kind of one on one that the woman describes in the article is incredible. it's worth $60,000 per year, and more because you can't even get a child into any of the private programs, even if you had the money. it's a real chance for him to recover from autism. i feel obligated to take it.

as for alaska, it is a dream - but i believe it is a dream that can be postponed for a few years. the next couple of years are what we have to get jake where he needs to be...we can back off and relax a little after that...most of the things after his speech and other development is caught up are socially related, and we can work on that ourselves. plus, it is not like we are making a choice that puts a severe strain on our family. this is workable, it's doable, and while it's not ideal because it is far from family, it is reasonable. we weren't planning on finding such great services in vermont - but there they were, and everything else worked out (medical, clean air, affordable housing) and we liked it there, and as such, decided to make the move.

i love you and jack very much and hope you understand where i am coming from. i feel obligated to do this for my son.

love,
lauren