Okay seriously I have done NOTHING but jump every time the phone has rang.
Are we ever going to get a placement!?
ACK!
Okay granted we haven't even been licensed for a week but I am impatient.
Had Makily's IEP (meeting to evaluate her progress and make goals for next year) today, I did it over the phone because I am a dingbat and could have sworn it was for tomorrow. It was like I was there, I was on speaker phone during the whole thing so it worked out.
It went well but I would be lying if I said that there weren't several instances that made my eyes well up with HUGE tears. :-( Part of me wanted to find ear plugs or mute the phone during certain parts.
One of the questions asked was what I was most concerned about when it came to Makily.
Gee that's a loaded question (and I did say that).
There are so many things I worry about for her and that I am concerned about, the thought of it brought a lump to my throat.
I told them I WANT her to walk. I stopped there but there was a huge part of me that wanted to SCREAM to them how much I want that for Makily.....and okay...for me too. I wanted to say that I want to see her dancing and jumping on her feet playing, hell I would settle for just seeing her walk slowly and unsteadily to me. That is my dream. God I hope it comes true one day. They talked about how Makily likes to watch the other kids play and to be with the other children. This really made me smile because she has come so far in that respect. Then the next sentence they read totally made me bawl (I put my hand over the phone).
"Due to Makily's disability she is unable to initiate meaningful play with another child".
It makes me cry just typing that.
I know it's true, Makily's body and mind don't work that way.
Even still it PAINS me that she can't sit down with a friend and color, or share toys or play a game.
This breaks my heart in ways I can't begin to describe.
The rest of the meeting I bit my lip and wished to God I had Makily with me at that moment. I wanted so bad to hold her and know that even though she can't do those things she is STILL MY BABY and the most amazing child on the planet to me and lots of other people too.
My heart just aches for her to experience all the fun things about being a child.
Simple things.
Like the way grass feels on your feet, coloring a picture, jumping on a trampoline, climbing a tree, dancing with a friend, sliding down a slide, feeling weightless in the ocean and the sand under her feet.
So while her IEP went well and Makily is getting all the services I wanted for her (plus HOPEFULLY some much needed equipment for in home) I am sad.
**To anyone from Makily's school that reads this, please do not feel bad in any way. I know you are all working hard with her and love her just like we do. This is just the all too painful reality of what it's like to be on the parenting end, it's hard (Tangie, I know you know that).**
I will be promptly picking myself up and dusting myself off tomorrow.
6 comments:
Have I mentioned how much I dislike IEP meetings?? I always leave feeling down in the dumps! Your little girl is a miracle! She's going to be just fine!!
tara said...
yeah, makily never used to play with toys and even though it took longer than other kids...she's doing it! i fully believe she will one day walk and play, it will just take her a little longer and a little differently than everyone else.
We keep finding ourselves in the same moods at the same time. Jackson had a great day with OT and that is what we live for the moments that are great instead of the overall picture. I have been on the teacher side of an IEP and now I can say I would say things totally different with new eyes.
you are great at dusting yourself off! Keep on keeping on.
much love
It is so odd to me, to see my child through other peoples eyes. I'm sure you feel the same with Makily. She is just Makily, Marie is just Marie. They are perfect to us, perfect to Him, and it is sad that others can look and only see what's broken. You're not alone!!! I have learned, that what the specialists/educators/doctors think is sometimes dead wrong. The feeding specialist told us Marie could not take a soothie bottle nipple. She needed a special needs bottle because she had no strong suck. They said that there was no way she could get any milk out of a soothie. Today Marie drank a full half ounce from a soothie nipple. It is the only bottle nipple she will take, for us, a half ounce of whole milk is a victory. It is the small things. Makily will do things her way, she does play, in her way. There are some who lack the sight to see that. And, she does dance. She is beautiful and she dances in your heart. Thank you so much for your post today, like you needed mine, I NEEDED to know that I am not alone!
its funny how we go through similar emotions at the same time. In mexico, we celebrate the "day of the children" at the end of april. We had a big childrens party and It was there that I saw how behind Katy still is. It was very hard for me. Like you, I want Katy to play, dance, jump, sing, talk and do all the great things that childhood is all about.
I know in Whom I believe, and God has never done me wrong. He's not gonna go changing now. I got to thinking about timing. How the order and timing of each ingredient in a recipe makes a difference between a gourmet meal or just a simple meal. So, we got a slow cooker going- but whats simmering is going to taste much better than the average soup.
PS- Shan's comment really touched and encourage me, thanks shan.
I thought I was the only one who dreaded IEP's. I drive to each one with a knot in my stomach because I know that they're going to hash out each and every thing that my daughter can't do, but should be doing. I don't know how I've made it through so many with no tears. The only time I came really close was the last one when we got her IQ test and learned that she was mentally disabled. Luckily I had my "parent copy" of the test to focus on while they reviewed it, and I felt like each and every one of the 6 other people in the room were staring at me waiting for a reaction. I felt like I couldn't breathe, but I just remember focusing on that damn paper.
But yeah...IEP's are just reality check reminders of the problems, and I hate going to them.
Post a Comment