Thursday, September 3, 2009

PT Progress Evaluation

This morning Finn had PT, the first time in two weeks (we canceled last week - just needed a break . . . and it felt good!). Eun brought me a copy of the report she typed up summarizing the eval she did of Finn nearly a month ago. I've been kind of promising myself all this time that when I got it, I was just going to stick it in a file and not bother reading it. Because, really, what's the point? I know he's delayed. But of course when she handed it to me today, I couldn't stop myself from at least skimming it. So here is my son, summed up:

Cognitive: 8 - 9 months
Perceptual Fine Motor: 9 months
Gross Motor:
Reflexes: 10 months; Stationary: 11 months; Locomotion: 8 months
Communication: 9 months
Social Emotional: 9 months

The eval took place when he was 13 months old. Nice, huh? I mean, like I said, I know he is delayed. But seeing it in black and white? Depressing.

However, I know it's just a snapshot of one hour of one day of his life. I know it doesn't tell the whole story about Finn. I know it's impossible for anyone to really assess what he knows and what he is capable of and what his ultimate potential is. I know that. And I keep telling myself that.

But still. Somehow the evaluation still pisses me off. I still just don't get the point of assigning age levels to him that compare him to some arbitrary "normal." I understand that it provides goals to strive for, but come on. He's never going to be age-appropriate "normal" in their assessments. And I feel like all this is really doing is demoralizing Finn and certainly me.

Here's a passage from Disability is Natural:

The constant monitoring of a child's progress in EI programs is enough to cause parents monthly heartaches. Parents have told me stories of watching their babies develop and grow and do new things. The joys of parenthood are great. We're so pleased with every new thing a child learns and accomplishes.

Our pride and pleasure are often diminished, however, when an EI expert arrives with another assessment or developmental chart, or when we realize the baby is not meeting the "goals" in the IFSP. We learn our babies are still "behind," according to the charts. Whatever accomplishments our babies have achieved are good, but not good enough. Our babies are still not-OK as compared to "normal" babies. Just how good do they have to be?

Some of us are able to ignore the disappointment produced by the official tests. We understand the EI professional is just "doing her job." Even so, many of us become beaten down and demoralized by these routine assessments. After awhile, we no longer rejoice at our children's triumphs. Their successes - large and small - are overshadowed by the generalizations made by the professionals. We once believed and celebrated, but now we begin doubting our children and ourselves.

EI professionals don't intentionally try to hurt our feelings and burst our balloons, of course. They're trying to be helpful. But here we are, doing as much as we possibly can to help our precious children, and it's still not enough. How good do we have to be? We may become wracked with guilt, embarrassment, and shame. Most of us are working our little tushes off to handle everything coming our way - we're not watching soap operas and eating bonbons all day - but we still doubt our own abilities and actions because our children don't measure up to artificial standards of normalcy, as reflected in developmental charts.


So there I was this morning, watching Eun walk Finn around the living room and dining room with weights on his ankles, while he cried almost the entire time. And I thought to myself, "Why are we doing this again? This is how he's going to learn to walk, by having weights put on his ankles and being forced to walk laps around the house? Really?" How is forcing him to do something he so clearly hates going to motivate him to do it on his own? I'm just so tired of this all. I mean, he'll walk when he's ready, right? The human urge to be upright is going to hit him sooner or later.

I just don't know anymore.


heather said...

He will DEFINITELY walk when he is ready!! Morgan was a late walker (29 months) and I found comfort from other moms in the club who told me they felt like the kids that walked later had more time to work on cognition and speech and didn't spend as much energy on walking. Hey whatever gives us peace and hope, right? :) The best thing to help our kids progress is love, devotion, attention and playtime -- all the things you excel in! The reports are no fun! They get me down everytime. It's just too in my face. I remember how sad I was the first time I took Morgan to preK (she was 3) and they had 'intellectual disability' all over her goals and paperwork. It broke my heart even though I knew it was true. I just didn't want to see it over and over again and have everyone discuss it like it was no big deal.

Evelyn Parham said...

I've never heard of weights being used. I would think that would be hard for Finnian to even move his legs like he wants to. I'm not sure, that's just my way of thinking about it. There is a good section in the book Gross Motor Skills in Children with Down Syndrome (a book you probably already have on your shelf), but it really helped me.

Every time my daughter had therapy sessions, I would always feel bad afterwards, because there was always something that she wasn't doing. The PT hardly ever focused on what my daughter could do.

Okay..I could go on and on, but I'll stop

Take care!

Laurie said...


Ugh. This is exactly why I asked our EI team to refrain from telling me Dylan's final "grade" (where he falls on the chart in comparison to "typical" kids his age) after his 1 year eval. And like I told them, it's not that I am in denial or anything, (although of course Dylan is a Ds superstar, ha!) it's just that I know me, and I know that seeing on paper that Dylan is actually funtioning as an "x" month old, would not do anyone (ok, me) any good. I mean, how does that help anything? Seriously?
I also noticed that they had used White-out on his report and got rid of all the places where it would have given a monthly score. Yeah, it may seem weird, but oh well. It works for us. I see NO reason to compare Dylan with anyone else - esp a typical child!

On a different note, what's up with having Finn wear weights? Seems rather intense for a one year old, eh? Our PT is AWESOME!! It's not like that at all - she sings to Dyl while playing and he just loves her to pieces.

Bah. Hugs Lisa. All of this stuff is so dang complicated, isn't it?

Chrystal said...

I agree with you so, so much on this. I HATE those stupid evals and I feel EXACTLY the way that KS is describing each and every time we go over M's stats.

Really, who cares? I don't think I do anymore.

I've met Finn and I've met superstars and that Finn IS a superstar. Dammit.

Hector and Jennifer Varanini Sanchez said...

Honest to goodness, your PT should not be using weights on your little sweetheart. That is unbelievable!

JaybirdNWA said...

Lisa, I wish that I knew words of encouragement for you but I'm not sure that I have anything else to offer than what has already been said here. As a Therapist, I understand first hand how demoralizing and demeaning these tests can be to parents and to their children. Too often, we as Physical Therapist treat it nonchalantly. From a personal point of view, these test results do not mean much. It is a known fact that children with Ds are delayed but they will learn it in their own time. Don't let this discourage you. Your son appears to be a healthy child with Ds who is in a loving family. Numbers and test results do not show the true capability of children (Ds or non-Ds). It is the love and nurturing of a loving family who sees their child for who they are, not for what they aren't.

Mel said...

I have been following your journey of evaluating Finn's PT and agonising with you. It is heartbreaking. We have IPs and goals but Luke is NEVER compared to a typical child. Ridiculous. And my typical children have never had a score comparing them to their peers, so why should Luke? Check out the DownsEd site- the journal you can download for free has all the developmental milestones without any age range. Good positive way to chart his progress :) I am going to post later about our therapy. Luke is learning to walk too. Maybe your PT could do some Prof Dev. and have a look at what we are doing and why.

Ban the weights! Will make zero difference. If he was here, he would be learning how to pull to stand, cruise and ride a ride-on- through play.

Sending you big hugs. Finn is a star :)

Monica Crumley said...

The weights sound awkward, for sure. I know my guy would be trying to kick them off or just sit down in protest, trying to take them off. As for #s, I know it's hard to read that your one year old isn't at the same level as his age, but really, a couple months isn't a big deal in the grand scheme of life. I look at the number, but then quickly get rid of it in my head and just celebrate how much he's come til now. He's on track for walking before age 2 and Dr. Libby Kumin said at the NDSC that speech doesn't really take off until age 3 to 4. The weights seem counter productive right now, but that's just my opinion -- I'm certainly no expert. :-) Go with your gut! You know what's right for Finn!

Cate said...

I have no great insight on the evals. They suck. I know sometimes they need specific numbers to justify providing the services at all. But it still sucks to hear.

The weights seem like too much, to me. Our PT used to bring over things like those big fitness balls and roll Abby around on them. It was pretty much all fun and games.

I don't know if Finn really needs weight training, but it seems to me that if he's crying the whole time, the PT should be thinking up some other thing to do. That's what I think their job is, to help in a way that doesn't torture the kid.

Meghan said...

Lisa, you are amazing! A mother of six, doing all that you do for your kids and your husband. As long you you do what you think is best, than that's all that counts! Truly amazing! Thanks for sharing....

Tara said...

If it weren't for Eon's awesome PT, I would be right there with you. She is amazing, though. She really knows her stuff, but is his biggest fan. All she talks about is what he CAN do! I fall in love with him all over again everytime she comes. THAT's who you need working with your child. Our OT, not so much. :) But she's an old friend and former colleague, so I tolerate her.

P.S. I'm an OT, not a PT, but those weights have got to go! Imo, that is not developmentally appropriate. Are you sure she has a background in peds?

Megan and family said...

My daughter is 18 months and not yet crawling, and your post has really helped me! It's hard not to get upset when the whole world seems focused on comparing kids to each other. I feel the same way about the evals. At the 12 month eval, I was told in a hushed/embarrassed way that "Gwyneth is significantly delayed in all 5 major areas of development." This was done to show that she needed PT, but I was also told that she would qualify no matter what because of DS!

Anyway, I'm trying as hard as I can to ignore age and just enjoy each stage as she moves along at her own pace!

Lisa said...
This comment has been removed by the author.
ds.mama said...

Dang, Lisa, I know I am chiming in late on this but if Finn is crying during PT, then it is time for a break. Eun should know this. EI is to train the brain to learn movement paths not to make the kid ready for the Olympics.

I'm sorry I know I must sound harsh but EI makes me PO'd when I hear things like this. I probably wouldn't completely drop EI but I would insist on a more laid back approach.

p.s. I used Finn's pic in a post today.

Lisa said...

The most important thing is that Finn's doing well. He's happy and has you and your whole family, and he has amazing potential regardless of how "age appropriate" his skills are right now. As for the PT, you have to do what feels right for Finn... maybe the weights are to help him build strength? I don't know, I'm not a PT and haven't heard about that before... but if Finnian is crying during PT it's not productive, won't motivate him, and doesn't serve anyone. Have you talked to your PT about the weights and why they are being used? Just curious to know Eun's reason for the weights...