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| Photo courtesy of Brad Fiore |
I guess I should start with the good news and meander my way into the crushing news I received later in the week. Isn't is funny how you always seem to get good news about progress and inevitably bad news about regression follows shortly after? That is how my week went. First, I received Chucky's report card and it wasn't all that bad. I am proud of him as I can see that he is learning. Then his IEP goals came in the mail of which he achieved 2 of 30 goals!! I was so elated. I called a million people (not really cause I only have about 3 people who I call to talk to), to brag about his progress. Most of my bragging happens on facebook and I have such a wonderful family of fellow parents who rejoice in these moments with me. So... Way to go Chucky Cheese cause you have accomplished great things this last three months. I was really high on life, until it happened. The phone rang. The dreadful caller ID that told me the school was calling.
C.C.'s physical therapist was on the other line so I knew something wasn't right. Ever notice how they never call unless something is not right? I wish they would call to tell us an amazing achievement every now and then so we don't dread hearing from them. Don't you agree? Anyways, she started talking about his muscle tone and stiffness which he has always had. That is why the docs said he has hypotonia. She asked about my older son's testing and the fact that he was diagnosed Cri du Chat and why I never had C.C. tested and I told her that I didn't feel it necessary. Not that I am in denial but why test for something that there is no cure for? Why add yet another label to his forms? Ugh... I guess she just doesn't get it cause then the word acceptance came into play.
Acceptance!!! Hmmm.. what to say about this word. Many NT families will not understand the full impact of this word. Many therapist don't see how hurtful it can be and I know acceptance. I live with acceptance and it swallows my being. I accepted the fact that doctor's thought my son would never talk, I accepted the fact that he was autistic, I accepted his Sensory Processing Disorder. I also accepted Buddy and his Tourettes, Aspergers and most recently Cri du Chat. I take care of my boys, spread awareness, advocate for, and research ways to help them. I do accept. I have accepted and will always accept and find more acceptance. My boys are who they are beyond all the labels that appear on paper. They are special and wonderful boys and I can accept that they need extra help, love and patience to allow them to grow.Then she requested that I bring CC in to be tested. More tests. More words to look up. WOW!! She said that Chucky has muscle atrophy and had regressed since September. He is having difficulties holding his head up and sitting up. He is stimming during group sessions and his arms, back and legs are very tense. He is loosing his range of motion. Can you imagine hearing all of this on the phone? In a sense I am glad she couldn't see me cause I think my face distorted into so many emotions all at the same time. The next step was looking up muscle atrophy....
So I did, after I frantically called his pediatrician and developmental pediatrician setting an appointment to have the bloodwork done and discuss his issues. The outcome sucked and I read way too much. I read about the causes of muscle atrophy and it included cancer, aids, malnutrition. Ugh.. Stop reading! So, it has been a really tough week again and I wonder when the light at the end of the tunnel is even going to be visible again. Whew.. thanks, I needed to rant so there you have it. Now I am going to go blow my nose, wipe and wash my face, and move forward on my journey. That includes getting tested myself so... genetic testing here we come and regardless of the outcome I will always accept my children and their diagnosis's. So I will find a place to attach the Nut and continue climbing up the mountain and with my determination I will not stop till I reach the top.
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