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Friday, May 2, 2008

I'm Happy/I'm Sad

I'm Happy because Mia is one step closer to therapy.

I am sad because once again I had to face the reality that Mia is not a 'typical' toddler.

Yesterday I had the intake appointment with the Early Intervention program. It is not through Easter Seals (like it was in Hawaii) so it is a little different. It is differnt for the better though. I thought this was just the intake (paperwork) appointment, but they actually had a teacher come to do the evaluation and they gave me their report right on the spot. I heard bad things about the EI program in this area and because I had to wait so long for an appointment I figured it wouldn't be that great of a program. I was thrilled that so far the program actually seems very good. I got almost everything that I wanted and I didn't have to fight for it. Mia was going to get Speech Therapy, Physical Therapy and a teacher 1 day each for 1 hour each. I asked about the Occupational Therapy and she was going to check on it because of the number of hours (or something...). About 10 minutes later she asked me if I would be okay if she took the teacher out of the home and replaced it with Occupational Therapy. I ofcourse want her to have everything, but I would much rather the OT than the teacher so I said yes!! I should be getting a call within a week or two to start setting the appointments. PT will come to the home, but for the OT and ST we will have to travel, but I don't mind!!! I also FINALLY got the approval for Mia to have private PT,ST and OT at a pediatric rehab!!! For the OT and ST she is approved basically for 1 session each a week for a year. The PT for some reason they only approved 1 session a week for 5 months, but they will approve more if she needs it!!! If I can find a place for pediatric aquatherapy they will approve that too!!! I am so happy, happy, happy that after all of the frustration I had with trying to get therapy that it is paying off!! I wanted LOTS of therapy for Mia and we got it!!!!

I was so happy after the appointment because Mia was going to get the therapy that she needs, but I was so sad too. Sad that she even has to have all of this therapy. Sad that the first list of questions were yes or no questions relating to speech and I had to answer every single one with a NO! I almost started crying (like I am now). Then it came to "why did you have a c-section?" I've answered this question many times and even more lately with all the new doctors and therapists I have talked to. Normally I can answer it without having to think about it and I won't cry. I was already sad about all the NO's that I had to take a deep breath so I wouldn't cry when I told the story of Mia's birth. Here is the breakdown of Mia:


She is 20 months 2 weeks and 4 days
SOCIAL/EMOTIONAL: 12 months
ADAPTIVE/SELF HELP: 12-15 Mos; 16 Mos; 16-19 months (very scattered)
FINE MOTOR: 9 months
COGNITIVE: 9 months -GULP, but I dissagree
COMMUNICATION (RECEPTIVE & EXPRESSIVE): Michigan= Rec. 12 mos Exp. 12 mos; REEL #3 Rec. 16 mos Exp. 8 mos
GROSS MOTOR: scattered 9-11 months

Ok, I know she is globally delayed, but this hurts so much to hear, read or even think about. I hate these appointments. On a daily basis (if you take out therapy sessions) I feel Mia is 'normal'. When we have these appointments I have to face it, she's not a typical kid. What is 'normal' to me isn't the norm. I am so proud of her for what she can do, but I am so sad for what she can't do. Sad for her and sad for myself. Sad that things are so much harder for her and she has to work so hard to do things that come so easily to other kids. I hope and pray that one day she will 'catch up' but the truth is after these kind of appointments that hard for me to see. If you can't see it, you can't achieve it, right? One of her goals is to stand alone and kick a ball. I would love to see her do that, but it's hard to invision!!

I am very upset about the fine motor. I asked so many times in Hawaii for Mia to have OT and was told so many times, she didn't need it. When I realized she did need it I was already fighting for the ST that they didn't want to give her that I didn't fight for the OT. I am mad at myself for that, I let Mia down. If I don't fight for her no one else will.

So I am not a drag I want to end on a happy note. I was told that if Mia does something more than 50% of the time to consider the answer YES. I had to laugh, I explained to her that Mia is very stubborn, there are things that I know she can do IF SHE WANTS TO. She actually beleived me. When I would tell the care coordinator and therapist that in Hawaii they would look at me like I was crazy, or making things up. So the teacher asked Mia to touch her head (which is something she CAN do!) and she wouldn't do it. The teacher said: " Can you ask her to touch her head? When I asked her she just looked at me (which she will stare at you like you're nuts)." I said I would try but if she doesn't want to do it she won't. Well, she wanted the teachers suitcase full of toys so she wouldn't even look at me. I gave up. A little while later more questions: "Can Mia clap her hands if you ask her to, without showing her?" (Mia at this point was playing with toys...paying no attention to us). I didn't even get a chance to answer and Mia looked up at the teacher and started to clap!!! The teacher laughed so hard! Then she said "If you tell Mia you smell with your nose..." And Mia started pinching her nose!! She asked the question: " Does Mia perform for social attention?" NO! Then all of a sudden Mia starts clapping with the loudest clap I have ever heard from her, rolling her hands (for roll em and roll em) and just plain being silly!! I said I guess I lied when I answered the question!! Mia was on my lap because she kept trying to take the teachers paper. I went to put her back down and I pointed at the doggy and said, go get the doggy, woof, woof. As I placed her down she said what sounded like DOGGY!! The care coordinator and the teacher both at the same time said DID YOU SAY DOGGY?!! I said well she is pulling out all kinds of moves that I haven't seen, next thing you know she will be walking down the hallway!!

2 comments:

Popcorn House said...

I should just email you, but I TOTALLY disagree too with the cognitive score. Maybe 19 months but 9 months are you kidding me! I mean just in your post she was doing things that are above 12 months. Pointing to her head and nose. I remember reading that at two years old a child is at least supposed to point to two body parts. Well she isn't 2 yet and pointed to two. That is DANG good.

You know Sammy's eval with Infant Development I disagreed with quite a few things too. I mean I have had four other "normal" kids, so you would think I would have a pretty good idea by now!

I totally hear you on the thinking you have a normal life 90% of the time. I feel like that all the time, but then once in awhile I feel like I am smacked in the face....HELLO! But I feel like we need that 90% to keep us going.

Don't be hard on yourself about the OT. She is so young, she is getting the best care from you guys that is the most important thing. I feel the same about Sammy with speech, I see other kids at the rehab that are in speech and I worry that in six months I will be wishing I did more to get him that help too. But until there is a missed milestone they really can't give the services (I think that is word for word something Kiera said to me....smart girl!).

I am glad that you are FINALLY getting the services that you need. And you know I am here for you if you need to talk girl!

Kiera said...

Mia sounds like she has quite the personality! I am so glad that after all of your hard work you were able to get the services that you were looking for. It is amazing the amount of work that we need to do in order to be advocates for our children. Mia is so lucky to have you to do all of that background work!

I agree that seeing the numbers is so hard. Like Suze said, they see your daughter for a limited amount of time, so do take that into account.

I LOVE the stories of her personality! What a HAM! She is adorable!!!

Let us know if there is anything we can do! We are here for you!