Saturday, April 25, 2009

Embracing Suburbia



We are house hunting.

We've owned a townhome for about 5 years. We (of course) bought it when the market was 'red hot'. That means we paid WAY to much for it! Of course... my luck. Anyway, given the current and no doubt long term downswing in the market, we figured we were pretty stuck here for a while. So we weren't even looking at getting a new home... even tho this one feels a bit on the tight side... for a long long long long time.

But we caught the bug.

It started out innocently enough. My dad sent us a link to a news story about a real estate agent who does "house swapping". My hubby called her and she came and chatted with us. She suggested that we consider renting this one out (since the rental market is "red hot".. HA HA) and look into a second home. OK... THIS IS RISKY FOR ME. But, we caught the bug. We looked. Bad idea. Cheap foreclosure houses at rock bottom prices and great quality. It is like a rash that you can't get rid of.

Itch itch itch.

So the hunt has started.

In pursuit, I spent the greater part of the last 2 weeks looking at houses online. Now, here is the rub. I reeeaaalllly want an older, cooler, more hip house in the city. You know, the ones with the great 'bones' and the cool coffeehouse at the end of the block. The progressive hippie-wanna-be neighbors and ultra-hip cool parents wandering the streets. THAT neighborhood.

But therein lies the rub. Because those ultra-hip-cool neighborhoods are also in the city with marginal schools. And the 'good' schools are in neighborhoods well outside our price range. And with our boy... and who knows WHAT needs he might have come kindergarten.... we have to go where good schools meet bargain basement prices.

We must live in SUBURBIA.

We have lived there for a while, to be sure. But that is not my dream. Strip malls and soccer moms and commuting and minivans. Sooooo not my dream. My hubby loves it.... big yard, big basement for his big TV, big 3 car garage for all his 'man-stuff'. His dream of dreams. Not mine.

But life is full of compromises and this is one I guess I am making.

However, if I am going to compromise for my family, then I want to make sure that what we get (especially for Jonathan) is perfect. And that means excellent schools. But how does one find out what are the good schools, especially for special needs kids?

Well, it isn't easy.

I called the Department of Education for the State of Minnesota. Yes, I did. I spoke to a woman in the Special Education division and basically asked her... given we can move anywhere... where the best schools are for a special needs boy (specifically speech delayed)? Here is a summary of her answer:

" All of our schools need to be in full compliance with the Americans with Disabilities Act and IDEA. If your son has it written in his IEP, then it needs to happen. If it doesn't, or you can't get what you think he needs, then you can call us for advocacy and mediation".

Sure. Thanks for the PC answer. Don't get me wrong, I am sure she HAD to say all that. But the problem is that I CAN be a good advocate and WILL call them if we can't get what he needs. THAT is not what I am asking. The truth is... if there is a school or a district that already has their shit together, then why should I choose to go to one that doesn't? Like I need MORE battles?! I understand that all the schools are suppose to comply. But there is a distinct difference between the ideal world and the real world. The truth is some districts have more money or better people and programs. Other districts place their focus elsewhere. THAT is the real world.

Oh well, the hunt will continue.

Pia

A Little Hero Worship...


I think I have a blog-crush. I have been following the blog http://www.schuylersmonsterblog.com/ from the writer of the book I reviewed before, Schuyler's Monster. I am just so impressed with his writing style and interested in both their experiences and his opinions about being a parent of a special-needs child. I am learning so much about the politics and process of being a good advocate for Jonathan through reading his site. I just had to pass it on...




His interview is in the first 13 minutes and well worth watching!


Pia

Friday, April 17, 2009

Speechless in Andover

Pic of Jonathan at the park
Taken with my phone
Impressive.

Just a quickie update.

Jonathan has another speech evaluation today, this time at the clinic up the road. Overall his mood was "ok"... not a total bear, but not completely on his game. I find these evaluations hard because it becomes clear to me how far behind he is, how little he can do... and how HARD we have had to work to get what we have. The therapist was very nice, and I am interested to see what approach she takes with him.

As always, I am hopeful for this new therapist. But I am also realistic. I am just not sure what he really needs. So we will continue to flounder about and see where it gets us.


Pia

Tuesday, April 14, 2009

Green-Eyed Monster Momma




I am an awful person.

A terrible horrible awful person.

Today, I saw a family I cared for at work quite a bit when I was pregnant with Jonathan. They were a beautiful, fun couple with a son whose due date had been the same as Jonathan. Unfortunately for them, their son was born at 23 weeks gestation. He had been terribly sick, with significant respiratory issues. He went home with a tracheotomy, a ventilator, and home care nursing 24 hours a day. Their road had been nothing short of a nightmare, I am sure.

I remember during the last stages of my pregnancy I took care of them often. They were always so lovely and encouraging. This family was even still on our unit when I came back to work. And I remember feeling slightly guilty that I had this 'perfect baby' and they had all the trials and frustrations while fighting for their son's life.

Today they came to visit. Their son is beautiful and perfect, a miracle of modern medicine. Nut brown curly hair, a quick smile, big brown eyes. He ran around our lobby area as his parents talked to us about him. He has some remaining medical issues, but overall is progressing very well and by all appearances is developing on schedule.

And when his mom said "oh yes, we figure he says about 80 words", my heart went still. I excused myself from the group and left. I am an awful person for the jealousy and anger and sadness I felt hearing their joy. If any family deserves a good outcome it is them. And I wouldn't wish our struggles on anyone. Nor would I even suggest that what they went through was easier, or better, or preferable.

But I still suck. I am still jealous of his 80 words, his engagement and flirting, his ease with the world. And I am sad that I have become this person... this green-eyed monster momma.


Sunday, April 5, 2009

The Beginning of a Month


The start of a new month is always a downer for me. I think that as each month passes I get more and more... sad? convinced?.... that this whole business isn't just 'a phase'. That Jonathan won't wake up a few neurons and suddenly all this will be behind us. Every week at ECFE I see the difference between my boy and the other 2 year olds, and I am sad.

I think this month is going to be a bit harder, because we are in the process of looking for new speech and OT. As such, new centers are looking to re-evaluate him themselves. We started this already on... of all days... April 1st. We took him to be evaluated for OT at the local therapy center. The OT was lovely... very warm and understanding. And Jonathan was having a bad day. Not bad-tempered.... but not very engaging. He was in wander mode. He didn't have any desire to follow directions or pay attention. To me... that day... he did look autistic. To a stranger who didn't see his good days, that is what I would have said. Not in the self-stimmy way... but in the disconnected way.... the non-engaged way.

Speech eval is coming up and now I dread it. What will be said that stabs at the heart?

We started this process a year ago in April. It looks like April is meant to be my sad month.

Pia

Saturday, April 4, 2009

Autistic-Like: Graham's Story



I wanted to give a quick review of a documentary I watched this weekend with my hubby. I had seen a little snip of it on GMA, and I went to the website and watched the trailer (http://www.autisticlike.com/) . Since the trailer made me get teary, I decided to plunk down the money to order the whole thing.

So, I sorta forced my hubby to watch it. Basically, Dan saw the title and said "Jonathan's not autistic, so why are we watching this?". I told him that this family also felt that an autism diagnosis didn't fit their child, and that is why I wanted to watch it. So I turned it on... much to the dismay of my hubby and my son (hubby did dishes while it was on...so you KNOW he was irritated... and Jonathan just wanted to watch cartoons).

As the movie progressed, tho, Dan slowly gravitated to the sofa. The film is from the parents (Erik and Jennie Linthorst) perspective, filled with video taken during the first 3 years of Graham's life. It shows vividly the 'autistic-like' characteristics he displays. It also shows him looking like other children. He had some similarities to Jonathan (motor planning issues) but other differences (more sensory dysfunction, but also better language). What struck me was how similar their story was... looking for answers, therapies, hope... and what happens when they are disappointed or frustrated. The movie at times sounds like a commercial for the Floortime approach (http://www.icdl.com/dirFloortime/overview/index.shtml), which I guess I would call a strike against it EXCEPT that I love the Floortime approach. And to be honest, Dan liked the movie so much that he is actually interested in going to a seminar in Wisconsin on that therapy. It is expensive therapy... well outside of our income... but even if we can incorporate some of the prinicples it may help Jonathan.

Anyway, I would highly recommend this documentary. I actually wish more people would see it... they might get a sense of how confusing and frustrating this world is for 'autistic-like' children and their parents to navigate.

Pia

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