Sunday, May 08, 2011

Mothers' Day

We win.
No one knows it but us.

But we do.

We are the parents of kids with disabilities who get to see the true value of our children. Though it can hurt, we get past what we thought our children would become. Though it’s painful, we get beyond whatever society decides what our children can or can’t do. And, no matter what we used to think, we stand up to build the life our children need, want and deserve.

We go beyond our past ideas, to the gift of the child that is. Our world view explodes... and then expands.

We struggle. We worry. Sometimes we rage. Sometimes we cry.


We are the lucky ones.

We get to know miracles. We know just exactly what it takes to learn. We know just how many muscles must respond to make a person able to walk or talk. We know just how the process of language unfolds and what it really means when it works or when it doesn’t. Reading, writning and arithmetic are more than assumptions for us.

We get to figure out what really matters. We know about justice (and injustice.) We know stuff we never thought we would or could.

We treasure moments.

And, no matter what society sees or understands, we know that love is not about ability or response to intervention or any other standard or value. We know the meaning of and the reasons for ‘fierce.’

We change the world.

Unconditional is us.

It's not easy, but we get to see behind the curtain.

We are challenged. We are stressed. We fight like tigers and sometimes we are frazzeled to the bone.

And we are blessed.

Happy Mothers’ Day to all of us!

Saturday, April 23, 2011

Aiming at Sarah Palin--but Hitting her Two-Year Old

So infuriating.

I have been away awhile fighting the home fires on enough fronts to make my hair straight (seriously!) But the cultural bias about disability apparently continues...

It was Sarah Palin's son Trig's, birthday this week and Sarah Palin posted a cutesy poem about him on line. In response a political commentary blog posted a criticism--not of Sarah, but of Trig... calling him that ever-favorite R-word because he has Down syndrome...

Political commentary has devolved in this country to the point where namecalling and playground slurs really don't surprise anyone--it's cheap and easy and gets adrenalin flowing. It isn't cute, and it certainly isn't intellectual, but it is 'the way it's done' in 2011. (You might have noticed this...)

Usually though the target is at least an adult... and involved in politics....

 They have removed the post. The author says in his statement that he is just angry that Sarah Palin uses her son as a political pawn. And he might even have a point--children of politicians are always part of their 'package.' The ultimate example that comes to my mind are Caroline and John-John. People might have agreed with him--if only he had made that point.

And let's just say, again, that if Trig had been of any minority other than disability, said author probably would not have resorted to a slur to talk about him... 

H/T to Stephen Drake for bringing this article to my attention.

Monday, April 11, 2011

Unfamiliar Territory: Letters and Lessons and PANDAS

Oh my. :)

When my oldest daughter was little I was so impressed with my little darling's ability and interest in reading and writing. We encouraged every attempt at a list or sentence or story. We thought she was amazing. Then she got to kindergarten. Her teacher looked at me with her eyebrow up and firmly told me that it was clear that our daughter had not been taught proper letter formation and that if we didn't start practicing with her EVERY NIGHT her poor writing would HOLD HER BACK. Then she proceeded to teach me how to write all letters starting with my pencil at the top line. (So the letter A would be formed Top down-Top down-Crossbar. And only this way. Ever.)

I went home shaking in my shoes. I practiced with her the first time right when we got home and went to bed that night with nightmares about her penmanship HOLDING HER BACK...

A few days later I talked with one of my girlfriends whose kids were going to Montessori... I explained all about the dire consequences of improper letter formation... My friend said, "I don't think so." What???? But Mrs H. said.....

My friend said that at Montessori they teach cursive writing before they teach printing because they believe that it's the lifting and placing the pencil on the page that is difficult for kids. "You can't tell me that everyone who ever went to Montessori has failed at life. And don't a lot of people just type? And what about people from other countries? Some languages don't even have an A"

Well yeah... duh!

I progressed eons that day. Let's just say I chose what I wanted to panic about after that--nobody could make me by just saying so!

(You will be happy to know that I can't actually tell you how she writes an A anymore and yet she does seem to be holding her own!)

This happens sometimes. Experts disagree.

What one group of people see as essential another see as superfluous or even dangerous...

This is not new news of course. People change schools and doctors and hairdresses and plumbers all the time.

I have friends who have taken their kids for heart and other surgeries to other cities, because things were available there that weren't here. And I know of kids with various disabilities who have received all manner of treatments or therapies in different cities or even countries essentially because the experts in various places face the same problems in different ways--there is more than one way to draw an A.

While I know many folks who have travelled for the treatments their kids needed, up til now we have never considered it ourselves. The only time we have even talked about an out of town specialist was for an eye issue Jenn has. But she responded to treatment. And recently a specialist has actually moved here (wasn't that nice of them?)

But suddenly things have gotten more controversial...

Jenn has had a change of behavior and an elevated ASO titer and her behavior is improving with antibiotic treatment... some medical practitioners would call that PANDAS... others would not.

Noted experts in one city (mine) don't believe in PANDAS... while experts in other cities do. Some big-name hospitals have PANDAS protocols... ours does not. Both groups are lettered, respected, learned people and respected institutions (I am not being sarcastic, they are.)

And they don't agree.

And all of them can give you a thousand well thought-out reasons why...

Obviously, this is much bigger than how to make an A... there are side effects and consequences on both sides of the equation. And a kid in the middle.

Then add in that no matter what either group of experts HAS looked at, you can bet that neither group has looked at 17 year olds with Down syndrome...

So, it's on us.

So far, I think the antibiotics are fine... she seems to be responding--even acquaintances are noticing improvement--and it's not like the treatments for things like OCD, behavioral disorders, etc will not still be out there once she is off the antibiotics... And strep is going around... Not sure how we feel about transfusions... Can't imagine talk therapy making a bit of difference...

Sure as heck can't leave her where she is.

We have a thoughtful medical team, we read and discuss and discuss and read. We listen... whether we agree or disagree... we challenge (because then they tell us more)... we pray. We take a step.

Rinse. Repeat.

This is my present process anyway... if you have one you like better please share!

Sunday, April 10, 2011

Long Time No See... and PANDAS Syndrome

The past few months have been a heckuva ride. First, I got a new job working DAYS!!! And yes, I do really like having a life for the first time since my kids were born more than 20 years ago (!), still finding it a little hard to embrace the fact that this life is MY life, but I'll get there!
The big differences? I sit all day. No really, all day. At a computer. I have had jobs where I run more or run less,  but sit?? Not ever... until now. Also, I have no keys. None. Just as well since I don't wear a uniform and I don't have any pockets...

It's weird I tell ya! New, interesting, engaging and weird.

And, Jennifer developed something called PANDAS Syndrome. Haven't heard of it?? Well, I hadn't either. And neither has much of the medical community. And many of those who have don't " believe in it" (whatever that has to do with anything...)

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (so get that black and white bear right out of your mind!) Simply put, it's OCD symptoms caused by the antibodies your body has built to combat strep. The antibodies attack the brain. It can be reversible. Of course you have to find it to treat it.

Back in January Jenn went from a friendly, social, FUNNY kid who could read a bit, was independent in bunches of ADLs and really enjoyed much of life to a kid who made no eye contact, stimmed constantly flicking her hair, saying "GUH" over and over and over and absolutely furious if you interrupted any of her activities, whose teacher told us she had to move from reading activities to picture-based activities and who was independent in nothing. She stopped answering, let alone conversing, barely fed herself, and needed help with virtually everything. And flat, flat, flat--unless of course she was raging. It was awful and so terribly sad.

We took her to the doctor several times and she had tons of bloodwork. Celiac, no. Thyroid, no. Leukemia, no. Anemia, no. You name it, that wasn't it. The only level that was out of the ordinary was an ASO titer of 400. Our pediatrician put her on an antibiotic and we thought that would be it. But it wasn't.

Fortunately my friend Louise in TX remembered a conversation with a friend whose daughter had had an adverse reaction related to their ASO titer. That led me to Google which led me to Saving Sammy by Beth Alison Mahoney.

That antibiotic didn't do much and the folks our MD consulted with thought PANDAS was not something real and that even if it were, 400 was not a very worrisome number either way. To their credit they didn't come out and say 'get off the internet, mom,' but they were clear that they did not believe. Other medical folks I spoke with implied 'this happens sometimes...' This sapped my energy in ways I can't even describe. So there we were.

It took a couple of my friends to grab me and say REALLY?? In just the tone of voice that a person needs to hear sometimes... finally I reacted:

Yeah, baloney! (Or something like that!)

Back to the doctor we went. Jenn had more bloodwork. And an EEG--no seizures. A neurology visit--nothing conclusive. And an MRI--no structural issues (thank God!!)

And her aberrant behaviors continued.

Our pediatrician and my friend who is a neonatologist (but was my friend first!) did not give up, thankfully. We did more bloodwork last week looking for something else and a repeat ASO just because. Our pediatrician called at nearly 9pm last Saturday night (Yes, on Saturday. Yes, she is wonderful.) to tell me that the ASO titer that was 400 in February is now 1600...

Jenn is now on Omnicef and it seems to be working. She is beginning to make eye contact and interact... she is not "herself," but she responds when you talk to her, smiles occasionally, and flicks her hair less. It feels like we are on the right road.


Network! My friend remembered a conversation about ASO titers. And other friends and family have held our hands, smacked me around (figuratively) and helped us through this very upsetting mess.

After I read Saving Sammy I contacted the author. She has provided lists of doctors with PANDAS experience and has a facebook site with discussion boards that have been very helpful.

Believe yourself. Some of the medical world forgets... forgets that flesh and blood is involved... forgets that the criteria of a study only determines who they studied, it does not determine who could ever catch/develop something. I was afraid of being unreasonable. I am not so scared of that right now.

Persist. No matter what.


PANDAS may exist... just sayin'

Picture from here.

Saturday, February 12, 2011

Big Doings in Rochester!

Geva Theater in Rochester has a new play opening this week and one of my daughter's friends is in the cast!! The play is called Over the Tavern and has played in many cities around the country, but this is the first city where a young man who has Down syndrome plays the character with Down syndrome. (Plus it's Andrew! We have known him since he was a baby and Jennifer thinks 'he is so funny!')

According to Andrew's mom, the character isn't as high-functioning as Andrew which was a little worrisome at first, but that's why they call it acting!

This is a great opportunity for Andrew, it is nice exposure for people with disabilities and good experience for the theater as well... And they say the show is funny. We are getting tickets--hope we see you there!