We go to the Down syndrome clinic once a year where we meet with a pediatrician, three therapists and a nutritionist. That appointments makes me sick for two weeks prior. Then a few weeks later when the written report comes in the mail, I wait almost a week before I open it. I have to prepare myself to open it and make sure I'm in the right frame of mind to read it. Every cardiology appointment makes me a wreck even though Hailey "should" never need another heart surgery. Even the ENT and ophthalmology appointments make me nervous.
Hailey's IEP (individualized education plan) progress report came home in her backpack this morning. I didn't even look at it. I put it right back in the backpack and I will look at it at the end of the weekend. I don't want to deal with it now.
Why do all these appointments and reports make me so nervous and cause such anxiety? A few reasons, even though I am well aware that my daughter has developmental delays that affect all aspects of her life, I don't like reading them on paper. In my every day life, she is just Hailey. I don't like hearing how delayed she is or what age she is "actually" performing a certain skill. I don't like being told that she has made zero progress in one area. Let's face it, if I could will this child to master skills, she would be a brain surgeon by now, but we all know that isn't possible. All things are done at her own speed and in her own time. I can't change it and she is working as fast as she can. Some things are just harder for her to master no matter how much time and effort she puts into it. As for the appointments, I think it is because I go in expecting the worst. I'm expecting something to go wrong or to get another diagnosis or something else to watch.
We don't judge Hailey by the words on the paper, but they have to be recorded for school...for the state...and for Hailey's best interest. I will read the progress report and I will take it all with a grain of salt. It doesn't define who Hailey is and it is just one moment in time. But for now, it's hidden in the stack of papers that came home with little miss today.
On a super positive note, we received a thumbs up on the glasses this morning! Hailey left them on at school all day and didn't attempt to take them off!!! Yay, Hailey!!!
Who replaced my toddler with this little girl? |
Glad to hear the glasses are staying on! I'm sure that could end up as quite the battle.
ReplyDeleteI get nervous and anxious about all of these appointments too. And I of course take everything personally and beat myself up all the time. I have tried not to do that, but it's so hard. I hate the summary reports just before IEP time because it feels like a list of things O doesn't do instead of celebrating what he can do.