An Unedited Rant

"I'm sorry what did you just say?"

"Can you repeat the question?"

I can't count the number of times I said this to the school psychologist who interviewed Nick and I on Wednesday during Elias's assessment by the Anchorage School District for Special Needs Preschool. Yes. Preschool. That alone is enough to make me a little emotional but the assessment had me on the brink of tears. I can't fully explain why. Everyone we met was friendly. They smiled at Elias. But my god there was a lot of them. Occupational therapist, physical therapist, speech therapist, teacher for the visually impaired, and a special needs preschool teacher. Five new pairs of adult eyes evaluating my son as I sat at a different table answering questions from the school psych. and the nurse who came by briefly to clarify a few things. None of these folks had ever met us and they will not be the team that will work with Elias. They are the evaluators who develop and recommend Elias's individualized educational plan or IEP.

For almost two hours we answered questions as they asked Elias to sort, match, color, roll, slide, string, drink, eat...all sorts of tasks to determine his level of need. And this is the thing. I didn't have a chance to say anything to them first about what I saw as his needs. And I understand why. It is a standardized assessment. He may be in diapers but he is entering the world of public school. The world of evaluations and tests. And this is not even new for us. Elias has undergone all kinds of evaluations and tests since his days in the NICU. Beginning with an Apgar score of 0,0,3, he has constantly been assessed. But you see I am his mother and as much as I understand the "why" behind the process it was downright painful to watch strangers watch my son with their pens and pencils scribbling away. Their brows furrowed for a moment. Their misinterpretation of his words or gestures. "Oh, your all done with this toy." No he just needs to turn it around to touch every side to see what happens if he puts it upside down even if its not suppose to work that way. And even though these highly qualified professionals soon figured this out I could not spit the words out first because I was engaged in my own interview process simultaneously though Elias sat only a few feet from my lap from my arms that wanted to scoop him up and run away and I might have if there weren't two familiar faces in the room. Mae Ann our speech therapist and Andrea our vision educator who came to be our advocates, who will no longer be working with Elias now that he is turning three. Three. Three. My baby boy is almost three. And my god I know that I won't be able to speak for him forever. I know that all of his life he will be evaluated by people that do not know how gosh darn precious his is and it doesn't matter if your child is trying out for the Olympics or for special needs preschool it hurts to watch others judge your baby.

Whew. I needed that little rant. And I could go on and on about how much I'll miss Mae Ann and Andrea, about why we are going through this process, about how Elias thought the whole thing was just a ton of fun and talked about it the rest of the day but I have a hockey game in half an hour. And after this week I need nothing more than a hard skate where I think about nothing but catching that silly puck. And yes, I feel much better. Thank you. 

Comments

[Tracy]

I came to see if you were feeling better. And found this post and oh, yes, it's exactly what I needed to read. we had our eval on the 4th, and today the report came. And I read through it and said - no, that's not right, that's not right. I told them that he could do that, but they don't really know him.

But overall, they did a good job assessing him, and I don't like the results, even if they are accurate.

Next up is our IEP meeting and we'll have to make our decision about preschool. My baby isn't even 3 yet, and I have to think about this?

But he turns 3 in a bit over a month (2/27) and EI will end that day.

sorry so long. The words are tumbling out of my fingers just now. I wish I could get words to tumble out of R's fingers or mouth or anything.

[Glyn]

I'm sorry, I wish it was easier to handle, but I think as long as we're parents, we're not going to like other people evaluating our children. It's hard, these others will never know our children as well as we do, never see what we see. I could start a rant here, too, but I probably should go to sleep soon.

Kieran's last evaluation and visit from the EI educator was in October and as a precautionary measure, she put him on the waiting list to have an evaluation by a speech pathologist. Well, last I knew, we were STILL on that list and haven't had that eval. yet. When he turned three (WHERE DID THE TIME GO??) a few weeks ago, I called to find out about the status of his speech eval. and was told he was getting closer to the top of the list. We were also told the options when he turned 3 was to either call the school district, or get on the waiting list for yet another speech pathologist. I still don't know what's going on, and really don't want to start over on another waiting list! Good news is that at his 3-year well child check, his pediatrician didn't think it was a serious enough issue to pursue, and to just wait until we hear from the therapists and go from there.

I can't even imagine sitting there and watching them with him, knowing I couldn't say or do anything. Most of the EI visits and evals Kieran has had have been at his child care during the day, so we couldn't attend. Thankfully, we have a wonderful child care and she can watch him and be his advocate for us. The initial eval. and the ones at LIFE are the only ones we've been able to witness. They were so hard, too! I kept having to remind myself to be quiet!

Hope everyone is feeling better soon!

[Sara]

To Glyn - check with an advocate re procedural safeguards - once the process of evaluation is initiated (you know, mom or pedi etc. requests an eval), by law they have so many days (60 I think) to complete it.

Christy - so how was your skate?? It's hard. It just is. Skating (stuff like that) helps. Keep on doing exactly what you're doing...

[DeannaBanana]

No words Christy, other than to say I hope you had the mindless fun you needed while trying to catch that puck. Distraction is a wonderful thing. Also, always my virtual support, for what it is worth.

(I guess those were indeed words.)

[That Girl]

My son's evaluation team had the worst psycologist I ever met in my life. He would say such WRONG things It used to make me laugh and then I'd wing him back with sarcasm which surely didnt help.
"He is suffering because he doesnt have a good male role model in his life and he needs one."
"Yeah, I think theyre having a sale at Target this week, Ill get right on that."
My absolute favorite was his 3rd grade eval "Terror seeks to solve problems through talking and compromise. He is a sissy."
I tell you this to give you a laugh and remind you that people are constantly evaluating your child, (and you) whether they are professionals or not and neither will ever really "know" him.
And to hope that his life is filled with Moms at the Swings rather than Muzzle-moms (and dads).

[Robbin]

I know this was traumatic for you, but I was kind of laughing at the end, because it reminded me about a story my ex-mother-in-law told me. They were military and they moved a lot, and she used to tell me a story about the time they moved from Colorado to Montgomery, AL, and she had to ask the school therapist to repeat herself THREE times because she couldn't understand the heavy Southern accent.

And you know what the therapist was telling her?

That her son needed SPEECH therapy.

I laugh everytime I remember that.

[linda]

Christy, Keep sharing your thoughts with us. Even though we're unseen friends, we care. We can identify with your feelings; you express what many of us have felt as parents, but thought we were alone in. Thanks!

The evaluators have a job to do, and no doubt do it as well as they can. But in spite of their training, they aren't the experts - you are! Their assessments are 'official' and determine what will be offered, but no one knows Elias like you and Nick do. Elias is lucky to have you both.

[Kyla]

My brain is mush...worried, sick, tired mush. There are very few coherent thoughts. But I just want to let you know that in spite of that, you are in my mushy brain thoughts. ((((hugs)))

[Christy]

You know, I felt a little better right after writing this post and then playing hockey, just moving my body and not thinking, helped even more. (And Sara, my team won and I scored a goal and I utterly exhausted myself, especially coming off the stomach flu, and it was totally perfect.) And then your comments either made me laugh--That Girl and Robbin--or reminded me that you all understood my motherhood angst, special needs child or not. And sometimes there is no greater gift than being heard and understood. Thank you.

I'll write more about this whole thing soon but for now its a warm Saturday (30 degrees) in Alaska and there is feet upon feet of snow to play in and a little blond boy who knows nothing of tests and judgment bu thinks every day, every outing, is an adventure.

[Vicki Forman]

Oh boy do I remember that moment when Evan entered the school district. Hang in there, I am here to tell you it does get better. Really. Just live each moment as it comes, be sure to stick up for your child and don't take ANY bulls---

[Kari]

Yep. I hate all the evaluations, tests, assessments, and interviews.

It is so painful. And yet, each step does something (one would hope!)

Glad you played hockey and scored a goal. I gotta get back on the ice! Great outlet for frustration. :)

[Diane]

I would love to tell you that it gets easier as they grow up but it doesn't. There will always be someone assessing our kids during their school years. Take heart in knowing that you're not the only one going through this and know that those of us who do can so relate! Sending many ((hugs))!

[Heather]

Assessments suck no matter who does them. Devon shuts down around new people. At his 2 year eval with the NICU clinic, he wouldn't say a word -not one word to anyone. The only thing that came out of his mouth was MaMa. They told me he needed speech therapy and increased OT. Problem was, Devon had a vocab of over 20 words and spoke in sentances at the time! Evals help see where help is needed, but that's about all. They are not a true test of what a child can do. The only thing is to continue what you are doing and it will come out (one way or another). BTW, it was 40 today in MT. I wanted to wear my shorts and flip flops, I compromised with capris!