Thursday, February 2, 2012

Being Misunderstood

If you remember, in Dean's school assessments, he tested as significantly delayed cognitively (too low, in my opinion), borderline delayed in motor skills (too high, in my opinion), and low-average in communication/language (in terms of receptive language, sure, but expressive? Oh my goodness no).

Fine. I contested some of it where it made sense, but in the end, I let a lot of it ride because it's getting Dean the services that he needs.

However, whenever I talk with his teacher or the SLP from his classroom about Dean, there seems to be a need for them to remind me how cognitively delayed he is.

OK, I GET IT. I DON'T HAVE MY HEAD IN THE SAND. I have a degree in Early Childhood Ed. and Human Development. I know what typical 2.5-year-olds are doing. Guess what? Dean does a LOT of those things. A LOT. Then again, his motor skills still need serious help and he's not talking yet. But spend a considerable amount of time with him and you'll realize just how much he knows.

Dr. Miller and Sara the SLP warned me of this. They warned me that they knew that Dean was bright and a lot of people would misunderstand him. That they would sell him short because he doesn't talk and may take a few extra seconds to respond or to get to the same point as everyone else. In school, it seems like they have very high expectations and know he's capable of more, but then they talk *about* him to me and there's an edge that makes me very uneasy.

So what do I do? I wrote an email to the SLP today after a conversation with her where I'd just had it. She just thinks Dean isn't talking because "he's on a slower path" and ... I have to stop, my blood pressure is rising just thinking about it. I wrote the email, which was more reactionary than I usually like to be, sent it, and got a pit in my stomach. I meant everything I said, but maybe just like that. By the time remorse set in, the "undo" feature disappeared (in Gmail, you get about 10 seconds), and it was out there. I waited, only to find that the email bounced back. It was like God was giving me a second chance.

So do I bring it up somehow, somewhere? Or just accept that some people are just not going to understand Dean and won't try? In a lot of ways, it doesn't affect what goes on in the classroom (I'm there, so I can see how the teachers interact/talk with him and what they expect of him), but I just can't shake it. I'm his mama and I'll always want to defend him. It's sometimes hard to know when to back off. I keep trying to be ok with this and it's just not sitting well with me.

Would love to hear your thoughts.


Kevin said...

Laura and I have friends who are parents to an autistic woman. They lived, like we did at the time in the city. The city school district pooled together all the special ed students. So their daughter was in a pile with the CPs, DSs, but more important, with the violent and unpredictable. So they moved to the school district that spent the most on special education. The top professionals would not get it. We were away for six years, but situation was only better because our daughter was now in the lunch room. Soon after, our friends pulled three of the kids out and home schooled them. They were close enough in maturity level to work them together. Their daughter improved dramatically. She is 26 now and still living with her parents. She can drive a car (passed the test), work a job, but she chooses not to do somethings that she can do. I think that it comes down to trust. If Dean can trust the teachers at school, he will succeed. If he can not trust them, go elsewhere. If you show that you do not trust them, he will pick up on that and he will not trust them. (I know, pretty serious)

Kim said...

Um...YES to all of this. I couldn't agree more. Just like you, I have a background that allows me a little more insight into all of the "norms" than other parents might have. Sometimes I want to say...I get it! I really do, let's stop beating a dead horse.

I cannot tell you how many progress notes and other things I have seen written about my child that ONLY point out the negative. I have kept them all in the hopes that one day I can say...look at what they told me Mallory COULDN'T do when she was 2 years old. I have our I/T people see Mallory in school so some days the note home is all I see. Sometimes it literally looks like a list of things she can't or didn't do. I want to scream at them "UM yes, we know about the things that she can't do, that is WHY she is getting these therapies. Can you please tell me the things that she CAN do and the things that you are doing to help the situation? Continuing to point out the negative and all the things that she can't do is not helping the situation at all. It's making it worse."

We are in the process of her transition meetings since she will be 3 in May (right after Dean I believe?) and the evaluation process has been hell. I feel hypocritical saying this because I'm sure I am guilty of judging kids and writing up language evaluations that don't give the full picture. But if I see one more test that involves stacking blocks (which Mallory is very good at and can do on her own terms but WILL NOT do during an assessment) I am going to scream. She is scoring way low on ALL of the assessments including cognitive. At first I was so frustrated watching her do these tests and doing so poorly on them when I know she is capable of way more than she is showing. I'm just continuing to tell myself that this is not the full picture of who she is, its just a means to getting her services and ensuring that she still qualifies. And if it takes them showing that she has low scores on all of these tests, then fine.

One benefit that I do have is I see how many of these kids who are "delayed" turn out. Many of them do amazingly well as they get older. The most helpful thing that anyone has told me is "don't write a script for her" We have no idea what the future will bring and what any of these tests even mean for who these kids are in a year, 5 years, 10 years. They are still 2 years old! Of course, I know it is MUCH different when you are thinking about your own child. But Dean is going to write his own story, don't let anyone tell you that they know more about his skills/abilities than you do :)

Kim said...

and...I have talked to her teachers about how they only tell me the negative things. It hasn't really changed anything though. I think they just see it as their job to be honest and report what they think/see. I think noone really understands unless they have been on this side of the situation.

Laurie said...

Never stop fighting for Dean. You are just as much an expert on him, if not more so, than they are. One thing I have become frustratingly aware of is how many "just here for the job" (or just adequate at best in skill and knowledge) people I will run across in Olivia's future. I'm just accepting that I will always fight that fight. Talking to other EFMP moms, it seems as if it doesn't matter the diagnosis, we all fight that fight.

Ali Foley Shenk said...

Thanks, everyone!!

Kim, I could have written almost everything exactly the way you wrote it except with Dean's name!! And I am so thankful that we are on top of things and that we are FIGHTING for our sweet kiddos because we know that they are capable of so much.