Tuesday, April 2, 2013

April

  Light it up blue!  Embrace Autism!  Autism Acceptance!  It's April.  Autism Awareness month.  Blue puzzle pieces and happy slogans are all over the internet.  There is nothing wrong with loving our children, accepting our children.  We should love our children.  Embracing and accepting iatrogenic autism, I cannot and will not do.  Ignoring the medical side because *shrug...that's just autism.*  I will not do.  Accepting that 1 in 50 children are diagnosed...and growing!  That, I cannot do.  When autism awareness turns into passive acceptance, we are in trouble.  Today, children will lose their ability to talk.  I'm not celebrating.  Today, children are have nonstop diarrhea.  Not celebrating.  Today, children are self harming.  Not celebrating.  Today, parents are taking their children to the pediatrician to get vaccines on an untested schedule.  Not accepting.  Some of those children will have a seizure and parents will be told, 'that's normal' or 'we must have missed a seizure disorder'  oops.  Some of those children will disconnect and doctors will say 'it's coincidence that it happens around the same time as the vaccines.  No, the seizure had nothing to do with it.'  I will never embrace that.

B's diagnosis is PANDAS.  So why should I be bothered?    If we had taken B to another physician, he would have easily been diagnosed as autistic.  His score on the ATEC was 67.  Last year, we listened to a PANDAS specialist speak.  He said that PANDAS follows a progression PANDAS, then PDD-NOS, then classical autism if it is not addressed.  I believe we were on that track.  PDD-NOS.  At that time, B fit much of that criteria.  Also, B had/has many of the same medical co-morbidities as children diagnosed with ASD.  How can I not believe autism is medical when my son's own medical condition gives him characteristics of autism when he is in a flare?  

I read an article today about autism acceptance.  It seems there is an undercurrent of 'biomedical intervention' equals a 'lack of accepting your child.'  This is where I see the 'Acceptance' movement going. Read through my entire blog from post one to this one and tell me that I am not accepting of my child.  We have poured many prayers and tears into this journey and it is all about helping our child.

We have helped B love swinging again.  We have helped him eat and enjoy food again.  His bath water no longer hurts his skin.  His constipation is gone.  No more random rashes.  He relates to his peers in a way he didn't before we changed his diet.  He is able to receive hugs from family members.  We have eased his hair trigger meltdowns.  He sleeps all night without waking.  He no longer tics until his chin is bleeding.  The tics are not affecting his speech or the way he walks anymore.  His tummy aches are gone.  Loud noises do not make him run, hide, or scream.  He can walk across a parking lot without panic.  Dark circles and sadness are gone from his face.  A few months ago, his ATEC was 28.  From 67 to 28.  This was not about changing my child, it was about helping him feel comfortable in his skin and in his world.  Decreasing the inflammation in his body, so it could function the way it was made to do.   This was about addressing medical concerns in a more natural way.  Finding the root cause and most natural approach before choosing the pharmaceutical route.  The sentiment going around is that helping my child in this way is a selfish choice.

The other night, B wanted to talk about his tics.  They are less frequent now...I may talk about that in another post.  He said, "Mommy, when I would tic, before the tic there would be a pain.  The tic helps the pain go away."  He was very candid in this conversation.  I told him that I knew that treatment is a lot of work and asked if it was too much work.  He said, "Mommy, I'm glad we're doing everything to help me feel better."

This month, I will not be lighting it up blue.  Or embracing autism.  Or accepting autism.  I will praying for our children.  I will be embracing my beautiful child.  I will be accepting his wonderful gifts and helping him develop them further, while still healing his body.  He is not Autism.  He is not PANDAS.  He is B.  And he is wonderful, amazing, beautiful, talented, smart, funny, kind hearted, sensitive, creative, incredible.......  



 

4 comments:

  1. We have taken the lonely road of not lighting it up blue, as well. Seems we are now haters for it, but oh well. I love my children and don't want them held back and hurting because of some disorder that some claim is a good thing.

    Our kids are becoming more healthy each day and we have a lot of doctors and therapists to thank for that, not the least of which is God who lead us down this road on our journey.

    Keep strong, sister. And, B, though we have never met, I know you have the best Mommy and Daddy a kid with these issues could have. I know you are a fighter and so strong. Stay strong little buddy. Your fight is a good one!

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    1. Thank you so much. And your kiddos are blessed with you, as well. Someday, our children will be grown and they will be carrying the torch. They will know the truth because they have lived it.

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  3. Very well put. Praying as well.

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