Wednesday, March 21, 2012

"Beating" It

In the face of some kind of adversity, there are always "success stories." Usually the success is overcoming whatever the challenge might be. What does a "success story" look like for PWS? For Dean?

As you know, PWS is a spectrum disorder, which means that there are some who are very mildly affected by the syndrome, some very severely affected, and everything in between. My guess is that Dean is maybe "significantly affected" by the syndrome.

When Dean was born and we got his diagnosis, Bob and I were resolute in our quest for high expectations for Dean. We didn't want PWS to limit him. But to have too-high expectations is being in denial. So we tried to accept where he was and start from there as well.

When it came to education, we thought about the options ahead and what we heard about other kids with PWS doing. Some were in mainstreamed classes, some in special education classrooms within a typical school, some in special education schools. We said we would be open to whatever was appropriate for Dean, but that we would shoot for mainstreaming him. Because, you know, that's what would be best.

Except if it's not.

Dean has recently been re-evaluated for speech and for OT through school. His IEP meeting for this is tomorrow (pray, if you think of it). In May, we will have an IEP meeting to establish Dean's school setting for next year. I know already (no, really) that they're going to suggest a "center-based" placement, which is at a nearby elementary school, but not the one Cole will go to. There, he'll have four days a week of a special ed setting where he'll get the therapy and support that he needs.

We know in our hearts that Dean really does need this level of support (and I know this could change, but this is where we are now). I wish I could say that we're "beating" this thing called PWS and that Dean could be with "everybody else." But for what? Just to prove a point? To deny what he has and how much he's affected by it?

Reading the speech and OT evaluations has been good, in that I feel they're pretty accurate, but hard in that the numbers are just killer. Seeing that your child is in the 2nd, 8th, or 12th percentile for an area of development is just crushing. :( Especially if you knew how HARD Dean works. I am simultaneously SO proud of him and SO said that this syndrome impacts so much of his life. I don't think either of these feelings will ever go away. High expectations and acceptance will always go hand in hand, with their corresponding feelings of optimism and grief.

Today, I listened to Dean try to say some new words, watched as he completed an 8-piece puzzle on his own, blew me a kiss for the first time, and get his PJs on almost all by himself. These, friends, are successes. I can't imagine that we will have a day (unless there's a cure, God willing) where PWS doesn't hold Dean back in some way, but we will THROW EVERY SUCCESS back in its face and say, "he did it." :)


Haley said...

Dean will always be a success story! No doubt about it. Education isn't the end all be all, he's going to be (well already is!)an amazing human being and that counts for a whole lot more.

Kevin said...

Well written. You are flexible. You will consider and reconsider your options as the years pass, and as Dean makes you aware of what will be right for him, his level of challenge and comfort. I know that Cole and EJ will have very large roles.

Laurie said...

I know how you feel. It's hard to accept. I always think Livi is doing great until I hear of another PWS child her age. They are always more advanced than she is (even Dean). Yet I look into her eyes and it seems she almost KNOWS that she's behind... she just seems so aware, yet her executive functioning skills just aren't there.

Dorette said...

my heart breaks for you. we'll need to make a similiar decision in the next few months, and I am dreading the process.

I understand, and I whish you well.


Ali Foley Shenk said...

Uncle Kevin, exactly!!

Haley, thank you. We feel that that is always going to be his greatest contribution. :)

Laurie, I thought Livi was doing really well by your descriptions! I think it's hard as parents too, because we know ALL of our child's strengths and limitations because we live with them all the time. Dean does know that he's behind in some areas, which kills me.

Matt said...

Only read this late Thurs night after your IEP appointment, so praying for you guys "post-appointment" ... whatever that looks like and you need from God tonight depending on how it went.

Thinking of you and praying for you in the midst of all the back-and-forth, up-and-down emotions of it all.

Giulia said...

Ali and all,
As a person without PWS but a soup of diagnosis, my only advice is : don't compare your children with the others. Even with children with the same diagnosis.

It's not because they success at one moment that it will be the case in the future. Conversely, it's not because they struggle now that they will struggle the same way in the future.
Also, a person can marvelously function in a given situation, but not in others. They can be severely affected for some symptoms and mildly affected with other symptoms.
Some will do better in social skills, other will do better with food management etc etc....
Even with the same diagnosis, no person is identical to another. Each one is unique, so embrace your child's uniqueness and don't care too much about who does better than who.

I have struggled a lot in elementary school and in middle school. it was much better in high school. I have failed at university due not to be able to receive the right care. Now that I get the right care, my life is back on track. It won't be a life what my parents dreamt about, it won't be a life identical to my sister, but it will be my life and that's all.
Your children won't do what everyone does, but they will also do things that no one would ever think to do in his life.

Also, it's not because they are in a specialized school that they "fail". They need a help that they don't receive in mainstream school, and better a thriving child in a specialized school than struggling and thinking about suicide in mainstream school.
What it amazes me as a person with disabilities is that most parents see mainstream school and ordinary life as the alfa and omega of life, otherwise there is a failure somewhere. Well, no, there is no failure anywhere. It's just life. First, normalcy is not the alfa and omega of life, and second, they are by no mean failure.

Comparing your children with the others and even with children with the same diagnosis makes only everyone unhappy, and for gaining what at the end ? Nothing, except bitterness and unhappiness.
You absolutely don't need that, nor your child.

Ali Foley Shenk said...

I see what you're saying, but it was not really the point I was trying to make. I'm not comparing Dean with others with PWS to say that he's failing while others are succeeding. I hope you have seen in other posts where I talk about his great strengths. Also, PWS *is* a spectrum disorder, so the truth of the matter is that there is a continuum to speak of.