Cerebral Palsy

Mia has been a very busy girl with various appointments this week. The first appointment was her hearing test, she passed! She has to go back to check one more thing, but the equipment was broken, otherwise her hearing is where it should be for her age. She had her speech evaluation and that went good. She doesn't speak really, but her receptive language is very high. She is learning more signs to help communicate, but she is also starting to attempt to repeat words when you ask her too! The first one was 'NONE'. I was out shopping with her and I am addicted to buying shoes for her, so as usual we stopped by the toddler shoe section, they didn't have any that I liked. I proceeded to look in the women's section for myself. Mia pointed at a pair of shoes and lifted her foot (she wanted to try on shoes because she now is addicted to shoes). I said "oh no, these are too big, this is my size. We looked for shoes for you and they had none." Then she looked at me and said 'NONE" and I said "Did you say NONE?" and again she repeated NONE! It was great. During the ST eval she asked her what the dog says and Mia panted and the ST said good and how about woof woof? And Mia tried to say woof! She will be going at least 2 times a week for ST!!
We also will be having a teacher 2 times a week at the house. Her PT is two times a week and she has an T eval next week. Today was her neurology appointment. This was the first time meeting this neuro. Apparently she was unable to review Mia's medical records prior to our visit because of an input error. While we were at the appointment she figured out the error and reviewed the neuro report and MRI information. She said 'Mia has cerebral palsy. I can say that with certainty.' She went on to explain why she said it. I didn't even cry. I just listed and had no emotion. I mean the CP term has been thrown at me since she was 1 day old. I have been told most recently in September by her new ped that Mia has CP and then after he read all her medical records he came back and apologized saying he would have to agree with her others doctors and not give her the DX. Of course we use the CP dx all of the time, for therapies and equipment. The neuro said that 50% have CP kids have cognitive issues/delays, but she doesn't see Mia fitting into the the 50% that have cognitive issues/delays. She also said, Mia is going to walk, it's just a matter of time. She mentioned Mia was a bit tight, which was a shock to me. Nobody has mentioned her being tight since her NICU days. She is pretty loose and hypotonic. So, I am sitting here asking myself "Have I finally accepted it? Am I okay with the label being attached to my baby?" Or is it that I am so far in denial after being told before that she has CP by more than one doctor and then having that doctor come back and change is mind? I am just not sure. I do know that I have accepted that Mia would always use the CP label for services and I was comfortable with it. I know that the label isn't going to change who she is and what she is doing, I love her even more than I could ever have imagined.
For now I am going to roll with it and see how I feel. I know even accepting a CP dx doesn't mean that I am always going to be 'ok' with it. I know some days I will laugh and be thankful and other days I will cry and think 'wow this really f'ing sucks!'
I am happy to say on a family note that we (mike, mia, tara and the dog) are going on vacation to Lake Tahoe for Christmas. DH is trying hard to make up for his selfishness that went on for 7 months. He was present with me at the appointment today and is napping with Mia right now.

Hearing Your Silence by Donald Robin, Ph.D.,CCC-SLP

Hearing Your Silence

by Donald Robin, Ph.D., CCC-SLP
We don't understand

when we hear your silence

We cant see behind your frustrated eyes

when you plead for our attention

We are unable to feel your awkwardness

when you try to speak and the wrong sounds emerge

We cannot be inside you to will your tongue to move

when it struggles to find the roof of your mouth

We don't understand the fear that consumes you

when you are on the playground when you should be having fun

We are not privy to your brain that creates a world of words

only to have your muscles stop their meaning

We do not hear your mind communicating freely

only to have us look quizzically and ask for repetition

We cannot sense your joy at moments of clarity

only to have it rapidly disappear again and again

We do know who you are

when you look into our eyes

We can hold you tightly

when your fists clench and tears fill your vision

We will struggle with you each day and night

when you practice your speech sounds with great deliberation

We are proud of your trying

when we might just give up

We share with you your pain

when your mouth is tired and slow

You know that we will love you

when you are little and when you grow

You know that we will be there for you

when all seems dark and cold

You know that you are special and what you want to say

You know you are our children and who you are each day

You know your world is full and how to find the way

You know we hear your silence

You know, we hear your silence

You know we hear your silence



(July, 2004 on the occasion of the First National Apraxia-KIDS Parent Conference)