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Old 03-24-2012, 03:34 PM   #2
Join Date: Mar 2012
Location: Oklahoma
Posts: 2
chaosncunfuzn HB User
Re: Need encouragement and hope

My heart is absolutely breaking for you right now. My daughter was diagnosed with left sided spastic hemiplegia when she was 13 months old. My world was literally shattered. I cried all day, and even went back to that place where I wanted my mommy. It took me a few days, but I finally came to the realization that the only thing that had changed was my knowledge of the situation. She was exactly the same as she was the day before, and that I couldn't let my knowledge become her disability.

There is hope. Diagnosis at 4.5 months means you can be more pro-active in his treatment. The one thing I cannot stress enough is THERAPY, THERAPY, THERAPY. With my daughter not being diagnosed until 13 months, there was a surprising number of bad habits that we had to break with her. Kids with limited mobility will always find a way to get what they want. With your son starting therapy much earlier, he will learn to do things the proper way, rather than the easy way. We have had her in PT, OT. We've used braces, wedges, constraints.

It all seems overwhelming in the beginning, but once you get over the initial shock, and settle into a routine, it becomes easier to deal with on a day to day basis.

Keep in mind, what seems life shattering now, may not be so bad after a year has passed. I'm not sure of the the severity of your son's CP, but you might notice that with therapy and equipment, he possibly could be much more capable than you thought he ever would be yesterday.

Sorry to make this so long, but there is one more thing, that I feel is above all the most important contribution you can make:
YOU ARE YOUR CHILD'S BEST ADVOCATE. You know him better than anyone, and right now, he has no voice, BE HIS VOICE. Don't be afraid to ask question, no matter trivial they may seem. Therapist welcome parental involvement. If they don't, then find a new therapist. Don't be afraid to ask for a 2nd, 3rd, of 100th opinion if that is what it takes for you to be secure in the fact that your child is receiving the best possible care.

Good luck to you and your family, and remember they never promised it would be easy, they only promised that it would be worth it.