Well, it went terribly. Gracie's half (which thankfully was first) went great. She met her old goals. We set new ones. She is continuing her once a week OT and once weekly Speech. I am very pleased with that part.
When we moved to Abby's half of the 2 hour session it got a little uglier. I will start by saying that about a month ago I called our service coordinator (with whom I have had a good relationship thus far) to talk about the situation with Yemi. I explained how disappointed we have been with her lack of creative therapy and that she hasn't come up with anything new for her in over six months. Long story short, nothing was done about it.
Ok, back to today. Before Yemi arrived it was myself and my Mom and then our service coordinator and our PT waiting. I began by telling the service coordinator about how disappointed I am in her growth and development over the past six month. We have very unclear goals, no good strategies and Yemi herself told me that she is running low on ideas of how to handle Abby. She listened to me talk for a while and didn't say anything. Instead of saying anything of any value she starts saying how she wished I would have called her about it (which I did but she just never followed up with me) and it should have been handled differently. I was so upset. I am trying to do everything the "right way" and all she can say is how I handled it wrong. I thought these meetings WERE to forum to bring up concerns. I was so angry that I started to cry (God, I hate that I cry when I get mad...). I was so upset I had to excuse myself to pull it together.
The thing that pissed me off so much was that she was basically saying that maybe Abby has hit the wall. That she may not do much more or be more coordinated. That I should get her the helmet that we have been discussing and an elbow crutch and that will "keep her safe". She had the nerve to say that maybe playing on the playground just "isn't her thing", maybe she will like art. REALLY? ARE YOU KIDDING ME? I am supposed to tell my two-year-old that she can't play on the playground.
I just can't believe they are so willing to give up on this kid who has worked so damn hard. I have worked so damn hard. I am so sick of having to push and push and push for every little thing. Does no one else believe in her? Honestly, it left me feeling heartsick. I still am teary eyed thinking about it. Being told that my kid is just disabled so deal with it was one of the hardest things I have ever had to hear. It hurt... a lot. To me she is just a kid. A normal kid who wants to play and climb despite being "disabled".
Things calmed down after I told them that I would not accept defeat. She is not done what she can accomplish and they will work with her. It was not an easy meeting with Yemi as we basically "let her go". That sucked. After a year and a half the service coordinator told her that maybe she had done all she could do with Abby. What made me know I did they right thing was when Yemi agreed. No fight. No disagreeing. She just agreed. So, that's that. We will be getting a new therapist, hopefully soon. And hopefully we can find someone who gets the fact that I am not willing to throw my hands in the air and say she is done. I don't think I have that in me.
The long and short is that we are getting a new PT now. I guess that is the silver lining.
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8 comments:
Do NOT give up and do not allow anyone else to give up either. I shudder to think what they would say to me if they saw Cici. I can tell you from experience that there are plenty of people out there who will not give up on your child. It's just a matter of finding them. Ask around! Good luck, and don't let those meetings get to you - I hate those meetings, and when it comes down to it, YOU know your child best, and labels/disabilities/limitations/etc don't mean too much. Hugs!
Look how far she's come with you NOT giving up on her. How can they not see that connection and want to keep fighting with you?
I hope you find the right person to help you help Abby grow.
I'm so sorry. I hope you guys find someone that can meet you and Abbys needs. Don't give up! Abby won't give up, so don't you either. You guys will find someone that will help you, I just know it.
Is it perhaps that people don't want you to be disappointed down the line so they opt for pessimism up front? I've heard many a story (usually in sports) about a kid overcoming and doing something everyone said was impossible when they were young. So sadly I'd say you are probably far from alone in being someone who hears from many naysayers.
These people are ignorant more than they are @$$holes, thinking in some weird way that they are actually helpful.
Try to look for the good intentions of people so that you can extend them more grace, and then flat out ignore the stupid things they say.
Abby will be just fine. The more freedom she has to be a daredevil and learn balance, the better she will be at. That's how these things work. Other kids who have a lifetime of problems are the one who are overprotected because their parents don't think they can do it. You aren't that parent. Practice makes perfect. Shawn the flying tomato White didn't become a gold medal snow boarder because he was born with great balance. It takes work, and with it, Abby can go very far.
Hey, and its better to cry when you are upset than to break things in half and throw tantrums. Most people lose composure when they are really upset. If you are only crying, at least you don't have to apologize for anything later.
Very true Tim. Thanks for that perspective. And I have been sitting here shunning myself for being weak and crying...
Well, "they" all told us that my nephew would never read and write, would be in a wheel chair for life, and would not be able to talk. At almost 13 years old he just entered main stream junior high on his own two feet. We never gave up on him, and you shouldn't either. Accepting a child's disability is different than giving up.
Go to the website teamhoyt.com
While the disabilities are not same, the story of telling a parent to give-up is the same.
Their story will tell you how they refused to give-up.
Anon - I saw their story on the news a while back and it took my breath away. Their dedication. Their spirit. It was inspiring. Thanks for sharing.
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