Alex is going to Madison....

You want to know what has been going on the in world of Alex the past three weeks?

• potty training, off and on (mostly off) 
• acquiring a wheelchair 
• acquiring a walker 
• trying out canes for standing/walking 
• getting appts for minor surgery June 7th
• casting for new braces since he grew out of the old ones 
• a new OT 
• hiring new PCAs to cover summer hours 
• figuring out if we can buy/fundraise an adaptive trike 
• buying earphones and an MP3 player that doesn't blast little ears out and  ...

...the one I'll mention briefly tonight, that Alex is going to Madison Elementary School. You local people know all our kids go to a charter school that does Montessori method, a great little PreK-8 school named Bluffview. We assumed all along Alex would go there. Our hope is that in time he will go there. We really went back and forth on this...Madison is the school in town set up for special education (which Alex is still going to need, at least for many more months, if not forever) and all the physical therapy/ occupational therapy/speech therapy that occurs in Winona area public schools is really rooted at that school. At Bluffview, the school would have to bring new PTs and OTs and STs in, and because they have a different arrangement (Winona district hires their own therapists and places them in the schools, while the charters in town have to hire therapists out of a program that works for the regional area), it wasn't clear how easily Alex's pretty darn significant needs would be met. What we were certain of was that Bluffview would try, and try hard. But they are dealing with realities they can't entirely control either. So Jerry visited Madison, a small older school about one mile or less from our house. It's where our kids would have gone if not Bluffview (or the Catholic schools). The special ed teachers are very nice and have been working at Madison a very long time. The therapists would be the same ones he sees now, and they're GREAT. The kindergarten teachers both seem very nice and welcomed Alex at last week's "round up" with "we've heard a lot about you, Alex!" Alex, I must say, was polite but nonplussed. He liked the gym.:)

I think and hope Alex will like it there.  Honestly, there are no real red flags, and it is clear they are the best set-up for Alex's needs (sort of one stop shopping for special needs kids in our town).  Everyone we have talked to there has been very supportive, and that goes a long way.  But it's also hard because 1) It feels a little weird to have four kids in one elementary school, and the fifth in another--like Alex is living in a parallel universe (again?)  2) We've never had a school other than Bluffview, which we know like the back of our hand now.  I looked at the Madison classrooms and couldn't help thinking "Really not Montessori."  But the things that Montessori does so well--sensory learning, self-initiative, etc.--are likely not to be Alex's strengths.  I mean, we're not sure he will be able to write well ever, but he seems to have enough control to type...or at least dictate through a voice recognition program.  He is likely to be more technology enabled than Montessori encourages.  Not that they wouldn't allow that--but if Montessori's strengths are not Alex's, at least in lower elementary, well, what's the point?

This is all to say that Madison has a reputation as a very good elementary school here, and we've met good people.  I think Alex will do OK, although I still have a hard time seeing him in kindergarten.  But I'm still a little sad about it.  In any case, if it doesn't work, we'll go to Bluffview and see what we can work out.

--Susan

"Sasha home! I home!"

Well, lots of news, little time to tell it.

We did get news that Alex has an official diagnosis of FAS (fetal alcohol syndrome).  Frankly this is not good news; it indicates more brain damage than just the CP.  But it also isn't unexpected and makes sense of a number of things.  More on that later....

But I wanted to mention some interesting things here.  Alex has been in a really, really good mood this week.  Cheerful, not many tantrums (last week was a bit of a bear that way).  And people are noticing: he's made some cognitive leaps.

The biggest was when I was putting him to bed four days ago.  We were looking at a picture book called "How do Dinosaurs Eat Their Food?," and when I flipped to a page when a dinosaur was flipping a plate of spaghetti (yes) I did my exaggerating reading that I do with the youngest kids "Oh NO!  Silly dinosaur!  No throwing, Dinosaur--right!"  Alex laughs and on a whim I gave him the Russian version "ne brosaitye, da?"  His giggling goes immediately to a all out laughing fit, and after a minute, he screams happily "Don't throw, Sasha!  Don't throw, Sasha!"--which stopped me in my tracks.  He hasn't called himself Sasha (his nickname, the only name he knew in Ukraine) in months.  We haven't called him Sasha.  And my "no throwing" talk was clearly to the dinosaur on the page.  It was obvious the Russian triggered a memory of being told "don't throw, Sasha!" in Ukraine (and I guess it wasn't bad, given how he was laughing).

The only place where we saw he would have the opportunity to throw anything was in the therapy room, where there was a ball pit.  He indeed would love to throw the balls out of the pit when we were there.  The next day, when he brought up the "don't throw, Sasha" language again, I suggested "Alex...do you miss Yana?"  (She was the woman who gave Alex some basic therapy on a regular basis in that room with the ball pit.)  He got serious fast and whispered "yes."  Keep in mind, if he had better langauge, there are a lot of things I'd say right now.  I'm not even sure he understands the word "miss".  But he recognized Yana.  So I thought about it and said, "Alex, I understand.  Is Yana nice?"  He again somberly said yes (and we thought so too, very overworked, but nice) ...but I'm not sure if the somberness is remembering Yana or worry about where this conversation is going.  Does he even understand that he is here forever, now?  Other times when he has heard people speaking Russian he has gotten very unnerved.  I touched his cheeks and said firmly and with enthusiasm, "Alex, this is your home.  THIS is your home.  Mama, Daddy, and Alex, all the time.  Yes?"  Huge smile again.  "Yes!  Sasha home!  I home?"  "Yes, you are home."

At family prayer, we ask the children who they want to pray for, and Alex has always said "the bus" (hey, he loves the school bus! this is an older picture, but deserves to be on this blog!).  But this one time, he said what sounded like Anya...I think he was saying Yana.  So we did.

In Alex fashion, he has been asking the home question the past few days.  A lot.  "I home?  I home?"  And grins ear to ear when we say yes.

Maybe this is why he is so happy this week. :)

An extended look at Alex's progress

Well, I have not been posting a lot lately because of everything we've been contending with around here...but in lieu of a long description of what Alex is up to, I thought I would post an extended video of his most recent physical therapy session. Things to look for, especially if you remember where he was at in June...note the advances in his social interaction and playfulness; language (longer and more sophisticated sentences); and physical abilities (see how well he stands up and sits up straight, with prompting). He looks more and more like a mischievous little boy, ready for the next fun thing to come along.

PT is fun

Just some pictures today....Alex does like his PT!

A late January update on Alex

Hi everyone, Susan here.

Lots going on since the last time we posted...which was a while ago since we all got hit pretty hard with flu, croup, ear infections, stomach viruses, you name it.  Seriously, everyone was sick and very sick during our Christmas break time.  Alex, amazingly, was the least sick of the bunch of us.  He had a lousy case of croup, but was less sick with it than Matthew was.  That's surprising to us, but good.

Alex was just at Gillette this week to check on how the botox and phenol injections were working for him--this is one month out.  Usually this is the peak advantage time for the botox.  The good news is that Alex can do a number of things more easily than he had--better fine motor skills with his hands, better stretching with his arms, and as we mentioned on the previous post, a lot less scissoring of his legs when walking...until last week.  Last week, his scissoring came back with a vengeance--all the PTs mentioned this and frankly it was obvious.  So after checking out his walking, stretching, measuring his flexors, etc., our doctor said this was good news and maybe some bad news.  Good news that the botox is working as expected many places.  Good news he took to walking so quickly while he had the botox influence.  And actually, they think the botox (and phenol) are still operative in his legs, incl his inner thighs and hamstrings...but when he walks in particular, that scissoring is really kicking in, and he thinks that indicates those muscles are contracted and working against the botox a bit.  Basically, those muscles are perhaps short because he didn't get the intensive therapy he needed in his first five years.  He was quick to say two things: he still thought the botox had a shot (no pun intended) of working for more than three weeks if they could adjust dosages.  He said it was definitely worth another try or two.  But the earliest they could do botox again was late March...too much is bad for the body overall.  So we hang out and continue his PT and wait.  He has a spasticity clinic appointment in late July now, to assess how everything has gone overall and what next steps are.  He suggested a step beyond botox could be bracing or surgery, neither of which I am thrilled about...but do work to help people with CP learn to walk.  I should say, his doctor is living proof that not walking isn't the end of the world--he is in a wheelchair himself, and moves himself (from chair to chair) like he is paralyzed from the waist down.  But the advantage is that many basic daily activities get so much easier if you can walk at least some, and it improves health too (bone density, organ health, etc.).  So, we keep trying.

The second half of the day was an appointment to get measured for a wheelchair and gait trainer.  For the sake of my blood pressure, I won't get into all that, other than to say it got done and we expect a call from our vendor early this week.  The entire process takes about 3-4 months...from this appointment.  Yes, we've been waiting for 3-4 months for the seating evaluation.  Anyway.

But he has a seat!  This is a booster style seat that can be attached to a regular chair, put on the floor, etc.  He keeps asking for his special seat, so I think he likes it.  Thanks Jim and Barbara!

School continues to go pretty well.  He likes it and loves taking the bus.  I ask him what he liked about school and he usually says "Bus!  Clank, clank!" and then "Circle!  Music time!"  Jerry and I are looking ahead to kindergarten next year and frankly I am beginning to get nervous.  Six months is a long time, and its hard to know how much Alex will continue to improve (I am thinking more language and basic school readiness here), but there is no question things are slowing down a bit.  That is completely to be expected, but it makes it hard for us to gauge how he will do in a more typical kindergarten classroom setting.  He also fits in so well in a classroom with special needs kids and typically developing kids...I worry about how other kids will treat him in a classroom of almost all typically developing kids. 

If you think "wow--way to jump ahead, Susan"--we have to apply to charter schools by the end of this week.  So it is on our minds.

On a happy note, I say "I love you" to him at night, and he replies "Wuv you".  And he gives me a kiss.