Tuesday, July 23, 2013

If I Had A Million Bucks



Crazy to think I would even rise to that level of freedom.  No, really.  To think I would be financially free and not be burdened by the reality of monthly speech therapy and occupational therapy co-payments and the ABA therapy bills that insurance doesn’t even cover (yet).  Hec, yes a million bucks sounds really good right now.  But you know what?  I don’t know about you, but I can’t even look at a bill and think, “What a burden this is”.  I can’t tell you how many times I’ve looked at my child and thought, “Thank God for all of those therapists and teachers that have made such an incredible difference in my child’s life”.  Those years that he received early intervention has really paid off.  Those folks that paid lots of money to colleges to be educated in special education so they could make a difference in my son’s life.  I am forever indebted to you for the difference you have made.

If I had a million bucks, I would spend it on research.  I want those educated folks that have studied microbiology and genetics to find a cure for Fragile X and Autism.  They spend a lot of time, money and energy making new discoveries and looking for a cure.  I want them to find a cure and I would be willing to spend my money to help them do just that.  I wouldn’t change a single thing about my son.  He’s amazing in every way and he brings us incredible happiness.  However, if you knew my son, you would understand that there is a barrier between him and the world that you and I know and understand.  That barrier appears in the form of stares and comments from others like, “You’re a baby”.  "You’re stupid”.  “Why does he rock back and forth like that, mommy?”  "Dude, chill out!"

My son is most likely oblivious to the long stares and unfiltered comments for now because he is still young.  But soon he will enter grade school and encounter other kids his age that act different and talk different.  He will begin to feel different from the others.  He might not make friends as easily as his typical peers.  However, he is the most amazing, happy, joyful, playful, loving boy you’ll ever meet.  How sad I feel for those that could miss out on knowing this amazing boy because they might choose to tease him due to his sensory input needs and noises he'll make that aren’t “normal”.  Many kids will choose to take time to understand the incredible beauty my son possesses inside.  My guess is those children will meet a friend for life.  He has the most contagious giggle you’ll ever hear.  He’s my beautiful son and I love him incredibly.  Please take the time to giggle with my son.... not at him.  Friendship is a beautiful gift and it won’t cost you a single dime.  I promise.

My little boy probably will not fully understand the true concept of money in his lifetime.  Someday he'll make some, save some, spend some but never stress out about it.  Lucky him!  

www.fragilex.org

Tuesday, July 9, 2013

Sometimes I Forget

Sometimes I forget that my daughter is four years old.  Teachers tell me she has delays and functions at a different level.  Evaluations by medical professionals tell me that she is behind in development in relationship to her peers.  ASDM testing puts it in writing the level of her intelligence is based on ages and how she did during this test.  However, in age based on her date of birth, she is four.

She is four and wants to play dress up with jewelry, accessories and headbands. She wants to help me make things. She knows the direction we are headed in the car and if we do not stop at our usual destination, she will let me know from the back seat that she has noticed the difference.  When we stop at the park and remain in the car to enjoy a quick lunch by the water and do not get out, something is not right with that situation. She knows that when we go to the water, we get out and play in the sand. She knows the alphabet and can identify both upper and lower case letters. She can count to twenty by two's (and regular).  She is four years old and she knows.

I want to remember that she is listening to everything I say and watching the things I do. She might not comment back, but she knows...