Saturday, March 29, 2008

I Am Hot

No, not like you're thinking, I haven't been "hot" since I was 21!

I'm hot as in, livid, but I've actually let myself calm down just a bit. For those of you who don't like to read updates that include complaints or bitterness, be warned, you may want to stop reading here.

So here's how our PT session went yesterday. Let me start by saying the PT walked in on DH and I kissing, although she didn't see anything. Don't worry it was completely PG as we were dogpiled on the bed with dear Chelsea, she won't let anyone kiss or hug without being part of it! :) I was just getting ready to leave for the weekend.

Here's our conversation from there:
My thoughts are in italics...

PT: So we were going over Chelsea's progress and my evaluation from last week and we think she's doing great. Her skills are in the 18-20 month range with a few in the 24 month range. (Chelsea is 26 months.)

ME: Great

PT: So I think we're going to step back for a while and just check in every other week to see if there's anything you need help with.

ME: HMMM, you know she's not getting any therapy when we go home right? This is all she gets right now until we're done with treatment.

PT: Yes.

ME: Well, the reason she's doing so well is because we've stayed on top of her therapy and make sure she gets what she needs. If we stop now, she'll fall behind, don't you think?

PT: We can give you handouts on things you can work on with her.

ME: No thanks, I've got plenty of handouts
... I've gotten so many handouts you would think I'm a PT, OT and Speech Therapist.

Then she directs her attention to Chelsea.

PT: Come here Chelsea, do you want to play? Show me how your Ernie doll works.

She fiddles with the foot looking for the on button as Ryan directs her.

PT: What am I retarded?

Can you see my eyes popping out of my head? Ryan and I look at each other in shock and disbelief. Did our physical therapist who works at a CHILDREN'S hospital with kids with special needs just say the R - WORD???

ME: WELL, I THINK I BETTER GO NOW.

Ryan: To be honest, that word kind of offends us.

double take, did my husband just say what I think he did?

PT: Oh no, I wasn't calling her that, I was saying that about myself.

duh? ... she doesn't get it.

ME: I know, but Chelsea is considered (insert R word here) and when you use it in that manner, you're implying that something is undesirable or unwanted...

PT: Well no, I don't think of her like that. She's just a little toddler, a little girl with Down syndrome. I'm sorry. I love working with special needs kids ... then she goes on and on about how saintly she is to work with special needs kids and how some people ask her why she would want to work with (insert R word here) kids ... and apologizing over and over.

seriously, is she getting it?

ME: Well we don't mean to make you feel bad, we just feel like we need to educate when the opportunity arises.

PT: Well thank you, I'm sorry ... yada yada ...

That's about where I left. In all fairness, she was very apologetic. And I have to tell you I left the hospital with a big smile on my face. You're probably wondering why ... because I just heard our therapist use the nastiest word on the face of the Earth ... NO ... because my dear husband just stood up and advocated for our daughter!!!!! Not that he hasn't advocated for her the past two years, but he generally doesn't let that stuff get to him. He's generally pretty passive and just blows those things off, but something has changed about him (more on that later). I was so proud of him, I was beaming. At the same time I was sad that I was really going to walk away. I was going to leave and abandon the opportunity to educate someone who plays a large part in the lives of many children with special needs. Thank you Ryan. I am proud to be your wife.

I suppose now would be an appropriate time to add this to my blog.

11 comments:

mommy to Kaden, Brody and angel Ava said...

First of all, I think posting the pictures showing a fraction of what Chelsea (an of course you)go through in a day is a good idea. The picture with daddy and Chelsea is adorable!!! It's very easy to see the love Chelsea has for you guys.

Second, my eyes popped too after reading the line of what the PT said. I can not believe it. Way to go daddy for speaking up. Carey, you both are so strong. It's amazing how you guys stick up for what you believe in. I know from experience that it can be really hard to do so. I commend you guys!!!

I was hoping that I could get your e-mail address. I have something to ask but would rather do it through e-mail, it is kind of long. You can e-mail me at nateandamy1@yahoo.com with it. Thanks so much. I hope you get rid of your cold soon. Take care.

Love, Amy

Unknown said...

Well, as a parent of a child with a diagnosed learning disability and another child with a speech delay and, I am also a pediatric Physical Therapist, specializing in working with kids birth to three, let me say that I am very offended by your PT saying that!!! I would never ever say such a word, let alone at home, or out of work, or at work.

And, it sounds like Chelsea is doing fantastically with her gross motor skills, but, I do not know the quality of how Chelsea is moving, and all. So, if you are not happy with the PT stopping, ask to speak with the supervisor. (I could say much more, but, don't want to say anything without knowing the facts).

Mommy to those Special Ks said...

*sigh*
Well first let me say that we had the same struggles BEFORE Kennedy was even diagnosed with Leukemia just trying to get her into the SN preschool in the school system. They said she tested too high and didn't qualify! I was like ok... yes, she's doing well but we'd really like her to KEEP doing well so she needs services! UGH! It was a mess! She's now going to a typical preschool and is doing just fabulous! She DOES still go to OT/PT/ST though, and while she was on chemo she was followed by the therapists at the hospital. I absolutely think you should fight for services for her there. (Not that you were asking for opinions! LOL)

ALSO, WOW! I can't believe that a PT who works with Special Needs kids would say that word and think it's ok! One of Kennedy's (former) pediatricians used that word right in front of us and I about fell over. That's the last time we saw him. WTG RYAN for standing up for Chelsea and all our kids!

ALSO, I compiled a list of all the kids with Ds and Leukemia that I know of who have pages, and I put the list on my blog... bottom left corner. I know you were wondering before, so that should help :). Let me know if I've missed anyone!

Give Chelsea a hug from us!

tekeal said...

i'm still trying to put my open jaw back together and popped out eyes back in... tho very impressive with the making lemonade outa lemons.

i'm continually touched by your amazing mothering. lucky, lucky chelsea.

tekeal

Michelle said...

Oh seriously - you & Ryan handled that MUCH better than I would have!

Seriously. She should have to have some sensitivity training at the very least, making comments like that.

I hope Chelsea's feeling better - and you, too!

Jamy Dunbar, Head Coach said...

Way to go, Ryan! Unfortunately, there are still those in the world who do not understand the power words have. It is up to those of us who do to stand up and educate them. You and Ryan are awesome examples of how that should be done. What I think is great is that I would bet my last dollar Ryan wasn't out to educate anyone, he was probably just protecting his little girl. Now that is a great daddy! You tell him I said so!

Love to you all
Chan

Melissa @ Banana Migraine said...

Wow- how ridiculous that a PT would be so insensitive. Ugh. Yay for Ryan and advocating.

Becca said...

Wow, as the parent of a 19 year old boy, I should say young man with multiple physical disabilities, I am really proud of you and your husband for speaking up. That PT, though, I am sure from her point of view, was well meaning, does need some sensitivity training. Mother Teresa she is not. The world needs more parents like you that speak up. Our children need all the voices we can give them.

I hope that you are feeling better today!

Shannon @ Gabi's World said...

Yay Ryan! Not trying to be unfair to my Ryan, but I don't believe he would have ever done that. So definatly feel proud of your Ryan! That is huge! I like how you explained it to her. Too bad she still didn't get it. She probably would have dug her hole a little less deep if she had simply said, "I am sorry. That is an excellent point, and I will make sure I never say that again."

Milk Mama said...

Wow! You would think she would watch herself more! That's like saying the F bomb in church! Hopefully she has learned something from this experience!!!

Beth said...

I could not believe she said that when I was reading it - I had to re-read it again!!! OH MY GOSH! Talk about insensitive (and stupid). I'm so sorry you had to go through that! YAY for Ryan sticking up for his baby girl!!!

Thinking of you all and hoping Chelsea is having a good day!
Beth