I am a researcher by nature. I don't like surprises, I like to study up and understand what I am in for. My natural inclination doesn't suit raising Noah. With Owen, I have read countless child rearing books for each developmental stage he's been in, asked advice of parents who I admire, and can talk with his teachers to see where he is compared to other children the same age. I can't do that with Noah.
Each special needs child's disabilities and capabilities can be so widely varied there is no developmental milestones that you reach at an approximate time. While browsing books at Powell's or at the library I discovered none of the special needs books cover Noah. Part of the trouble is that we still don't have a diagnosis. Epilepsy is a symptom of some greater issue. Noah suffers from some unknown condition and his seizures have caused brain damage. He is our own little enigma.
I have no idea how to potty train him as he is quickly outgrowing the largest size of diapers sold at regular stores. Noah can be out of control in a public setting and I don't know how to quell that. He is outgrowing his car seat but his hypertonia (low muscle tone) makes me worried he won't be safe in a booster car seat. Every day I have new questions I don't know the answers to. And worse, I don't know how to find the answer.
His therapists and teachers are good for speech therapy and new play skills, but that doesn't answer my questions. His pediatrician the last time we saw him asked me if I have told Noah not to cross the street without a grown-up. I don't remember what I said but I was thinking I might as well say it in Japanese, Noah wouldn't understand. I know his doctor is aware of Noah's disabilities but his focus is physical health and generalities.
I am a confident parent. Owen is my shining example that I must be doing something right. But just having to muck my way through raising Noah without any idea of what I am doing is so very unsettling. Lots of frustrating trial and error is in store for us. --Amy
Amy, this is uncharted territory. But you and Geoff probably don't realize that your natural instincts are giving Noah exactly what he needs. Look at how far he has come...You and Geoff work tirelessly and set the bar for him to accomplish the most he can, and darn it he is reaching those goals. Just keep giving Noah your guidance, love and patience and he will be all that he can be. You expect the most that he is capable of delivering and he is meeting his challenges and trying his darnest to achieve them. I have never seen such a strong little boy, not just physically but mentally. I believe with all of my heart, Noah, bless him, may take awhile but will be all that he can be, and in time will amaze all of us. Just give yourself credit that you and Geoff are the perfect parents for him and are capable of bringing out his full potential. And Owen is the most patient and understanding big brother. I can't express how much I admire you, and am really puzzled on how you became such an awe inspiring parent. Love you Mom
ReplyDeleteAmy, I have not had the pleasure of meeting you but I worked for a brief time with your husband Geoff at Transcore and he spoke of you and the boys with such love. Honestly, I have no words of wisdom for you with direct respect to Noah's condition. I do, however, feel strongly about this. . . there are no accidents and I believe with all my heart that Noah is YOUR son because God trusts that you and Geoff have all that is required to care for your son and his brother. The details, the solutions, the answers will come to you when Noah needs them. TRUST in yourself, TRUST in Noah and TRUST that we are not given more than we can manage - sometimes these words are empty I know and in those times - your family and friends will believe for you. Best to you all - Cherie "coop" Cooper
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