We participated in the NStar Walk for Boston Children's Hospital yesterday. It was tough getting donations this year but we still managed to raise $5900!!!!!!!!!!! This is going to be our last year walking for Children's because there is a lot that goes into doing this walk. We are grateful for all that they have done and we donate each month on our own. During the walk yesterday, my friends and I were trying to figure out another way to give back to the cardiac unit so we will figure something else out because I always want them to know how grateful I am for giving Molly something I would never have been able to do. We walked 7 miles. I had no idea what 7 miles was going to be like. It was hot, long and it was tough staying hydrated. As the walk went on some of us were lagging behind and others (Jay pulling Molly in the wagon) were pretty far ahead. We had a lot of laughs, a lot of complaining about how hot and tired we were, how are feet and legs were hurting. We just kept thinking about the reason we were doing it and that is what helped us to finish. I ended up getting pretty sick after it was over. I didn't drink enough and had heat exhaustion. Guess Molly gets her hatred for the heat from me. We still had a great time and I was so happy that the people that did show up were there. They mean more to us than they will ever know!!! I can't thank everyone enough who donated. I know that nobody is rich and money you work hard for what you have so the fact that you were able to contribute means so much to us!!!
I had Molly's IEP meeting this morning. I was all fired up going into it because I had received her reports from PT & OT as well as her academic report last week. It had stated that she knew 22 out of 26 uppercase letters and 25 out of 26 lowercase letters, 6 out of 8 shapes & 8 out of 10 numbers. Does that sound great? Yes but it wasn't accurate and that bothered me. She knows all of her letters, numbers and shapes. What's the big deal? She knows most of them. The big deal is that she struggles in every aspect of her life and I want her to get the credit that she deserves when she does something right. I had all of my questions and goals written down for her and I asked them all. The teacher gave her take on everything. Molly has made a tremendous amount of progress this year, she is a joy to have in class, she has trouble transitioning but is doing so much better. She is so smart and is socializing better and better. She is starting to have a back and forth conversation with her peers and teacher. I questioned how she was being tested because she definitely knows her letters and numbers and she said that she's "easily distracted" and she's tested in a classroom setting so it's hard for her to focus. If you know that she knows them all but didn't tell you all of them at the time of the test, you can't give her credit?!
Next was speech. I didn't get this report ahead of time but I was prepared. I had asked her speech therapist what types of words we were currently working on and she said "cvc1cvc2" which would be words like "people, bubble" and she is progressing really fast and can say just about all of them in this section. So at the meeting today I asked what type of words they were working on and she said "CV & CVC" which we haven't worked on in therapy in months. I was surprised when she said this. CVC words are words like "dog, cat". I told her where we were and she didn't think she should be working on those yet. I sit in on every one of Molly's outpatient speech sessions and she is definitely where she needs to be so I didn't agree with this woman today...AT ALL! How is she going to progress if she is being held back? She is fearful of regression over the summer because she was out of school for a week and she thought she had taken a step back. Her one hour of speech a week isn't what is going to prevent her from regressing. She also said that she is easily distracted but can focus in the speech setting because it's just the two of them but if someone opens the door she looks to see who it is. Who doesn't do that? I do that! She had recommended speech therapy during the summer through school. Not happening. I told her that she gets outpatient therapy for speech and we will continue with that during the summer.
OT was next and I really liked this lady. She gave Molly so much credit and understood where I was coming from. I tried to explain to everyone that Molly is 4 on paper only. She can not be compared to other 4 year olds because that isn't fair to her. I find myself doing it all the time. Like when I see the kids running around on the playground and talking to each. But that isn't her and she shouldn't be treated that way. OT was very happy with all of the progress she has made. She gave me a list of things to continue to work on over the summer and didn't think she needed additional therapy over the summer.
PT wasn't there which I thought was kind of ridiculous. She asked if I had any concerns with the PT report and of course I did. It says that she needs hand held assistance going up and down stairs. We do not help her go up and down stairs and haven't for a very long time. They said that she is easily distracted and they do it for safety purposes. Show me a child that isn't easily distracted. I also asked if she more easily distracted than other kids and they said yes. Well, Molly wasn't around kids for a very long time so this is a whole new world for her and she's very curious about everything going on around her. I didn't sign the IEP because I'm going to have her outpatient therapists read it.
They suggested summer school for Molly and I wasn't having any part of that. It's only for 16 days, it would be at a different school with all kids that have delays. Her teacher didn't think she would benefit from it because by the time she transitioned it would be over. I was told that everyone loves her and even people that don't know any kids names know Molly. Someone stopped me in the hall and told me how much she loves her. She said when she hears the name "Molly Leary" she puts her hand on her heart and says "awww". She told me that she is the sweetest little girl and everyone just loves working with her. It was nice to hear how much she is loved. She is going to repeat the three year old program next year and will have the same teacher which will be good for her. But I know one thing...we are both ready for this school year to be over!!!!!!!!!!!!! 9 more days!
I really dreaded this meeting. Every aspect of her life is a battle and I didn't want her education to be that way too. I'm more than just a mom to Molly. I'm her advocate and her voice. I just have to always hope I'm making the right decisions and doing the right thing for her. Hopefully I did her proud today and she will have a great year in school next year!
Thanks for reading my long winded update!
Kerry
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