Wednesday, April 8, 2009

Grateful and a little depressed

We just received yet another developmental assessment. We've read quite a few in the past year, written by Quinn's many village members. This most recent one is by the wonderful folks at Quinn's amazing new super-intensive early intervention program. This is a pretty thorough report, discussing each area of Quinn's development. And these folks know what they are talking about because they spend hours with Quinn each day. 

Reading about what these folks are working on with Quinn, and how they are doing it (with a combination of TEACHH, PECS, ABA, and Floortime!) gives me an extraordinary appreciation for their work. I've observed Quinn in the classroom there, and the patience, knowledge, commitment, and professionalism these folks exhibit is stunning. So that's what I'm grateful for.

Now for the depressing part. Quinn is really delayed. Assessments are an imperfect measure, and they all differ, and the instruments don't capture all the strengths, and the reliability and validity may be questionable and who cares anyway about the numbers, and yada yada yada. But it's just a downer to read that your 30-month-old has the cognitive development of an 8-month-old.  And even the areas of relative strengths show a 50% delay, so around 15-16-month level. Just not that fun to read, really. None of this is a shock, but well, it always is, a little bit, to see it in black and white, after all the work, all the "more" games and putting blocks away one-at-a-time.

And even though I am blown away with the patience of the folks working with Quinn, that also makes me a bit sad. Because frankly, I just don't have the patience to to exchange a PECS card for a Pepperidge Farm goldfish 30 times at every snack, like they do at his program. (Quinn eats a lot of goldfish - yum!) Even if I were not working, I probably wouldn't do it, which makes me feel a little guilty and inadequate...and grateful that Quinn has people in his life who will do that every day for a few hours.


Umma said...

I always feel the same after reading the evaluations. It's a cold dose of reality that I'd prefer to skip, to be honest.

I often feel that I'm not doing enough for Monkey but I also feel strongly that we have to let ourselves be a normal family as much as possible. I just need to be able to enjoy being his mom. I don't want to be his therapist!

PECs is a time consuming and inefficient way to communicate IMO. What we've always told our therapists is that we want to be moving toward an electronic device for communication. PECs still plays a role in that, he needs to understand that the pictures represent real objects and that he has to "exchange" them for what he wants. We've found that leaving the PECs to the professionals has given Monkey the foundation he needs to use it sucessfully. He's moving on to more efficient augmentative communication devices now that he has the basic skills.

fragilemom said...

Oh the joys of feeling inadequate! Been there...still go there! I'm so with you on the "in black and white print". I do the talking to myself (out loud), telling myself and whoever will listen that the tests are soooo imperfect. A lot of them look for EXACT things to happen or be said from the room for thinking outside the box or being in context. Easier said than done, but try not to beat yourself up. At least that's what my sweet husband tells me a lot, especially when I'm crying. I've gotten better because I look at what God gave me and I know He wouldn't have given them to me if He didn't think I was the right one for the job! That is pure TRUTH!

We do "part this, part that" of therapies. I don't work and I still don't want to sit and exchange all day. Actually with 2 others, I'd be a neglecting mom if I did. We do therapy in everyday life. We mix pictures, song, words, etc. Give it to me and I'll throw it in there. I think they also respond differently to the therapists requests than to mom's requests a lot of times...if they know what's going on. If it's in everyday life then he doesn't even know what hit him. Sneaky, huh?!

Ian is HUGE Goldfish fan too!

fragilemom said...

P.S. Would love to have you as part of my blog as well. Comment anytime.

Famiglia Grande said...

Evaluation days are always a downer. Each and every time both my husband and I have the same disappointment. But then you look at your son, he give you a hug and you know that he loves you. That makes the world go round and round. As we all understand why standardized testing is needed for our children, it's always hard with our little guys since they don't do well with on demand testing.

My guys is similar age to Quinn and time and time again, he will not stack the red blocks for testing. Instead he throws them behind him. But if we're at home playing with his favorite blocks - you bet he'll do it. So just remember that you know his true abilities and that he loves you very much.

Jen said...

I've never done PECs with any of the boys. I know they did some with the older two at school, like for example, trying to get Matt to indicate when he needed to use the restroom (when he was younger--potty trained at home; too shy at school to tell them).
Even for Evan now, I almost feel as though I might delay his language even more if we use them. Although I KNOW what he wants when he hands me his cup, I always encourage him to verbalize by saying what is appropriate (which of course, you can do with the cards, too). An example: a couple of days ago he said, "Mo (more) du (juice) peaz (please)." If I had been using the cards, would we still be at the point where he was just handing me a card? I don't know, just my opinion...
I realize that there are some children who may not be as verbal...I'm just not anticipating that for Evan.

Momma Mayhem said...

I totally understand. At every eval and every birthday I feel a sort of bittersweet emotion, there is so much improvement in Jake and yet he is so far behind.

I am sad for the experiences he misses out on, still he is so full of joy at the smallest things and I see such satisfaction in every tiny achievement that the sadness fades quickly. As for goldfish crackers, they seem to be a universal stable of the fragile x child's diet. I recently blogged about hunting for easter eggs filled with goldfish crackers! see I would love to follow your blog, the language of Fragile X and the life it requires is one spoken by so few and understood by even fewer.

Like you I don't have as much time to devote to many of these intense therapies as much as I would like. I work two jobs as a nurse and sometimes I come home and feel like I am in a scene from the movie Groundhog Day watching the same videos with Jake, handling the several hundred requests for more goldfish and attempting to calm the storm when they are denied. I think any Mom doing what we do can only do so much..and for those who are lucky enough to be able to devote every minute to therapies and give every second to their child..well..maybe they sit and think about what they have given up of themselves while I sit and wonder what time I have given up with my son to provide for him and how I can cram as much intervention and love into the time I do have. It's always going to be a balancing act..there are wonderful things we experience with our exceptional children that no one else will ever know along with those every day experiences we give up.