My son was born a healthy baby.  Full term pregnancy.  I did not drink, smoke, or take drugs of any kind.  Nor did I have a history of this behavior.  I didn’t drink caffeine, eat fresh water fish or any other food that could have elevated mercury.  I stayed active.  I gained 35 lbs with this, my second pregnancy.  Labor was induced by breaking my water during the week of my due date as a result of pregnancy induced high blood pressure that had made an appearance the week before.

The birth of my second child was so exciting to me.  There are five years between my two children.  I waited until my ex-husband was comfortable with the thought of another baby.  When we made the decision to get pregnant, I started prenatal vitamins.  I did everything humanly possible to make sure an easy pregnancy and healthy baby.  Believe me, I have analyzed this under the proverbial microscope a million times.  I believe most parents of children with disabilities go through this.  “Did I do something wrong?”  “Could I have done something differently?”

A chubby, happy, breast-fed baby, my son was the picture of perfect health until around a year, which was shortly after I stopped nursing and switched him to formula.  Then he began to have a series of ear infections, upper respiratory infections and continual sinus drainage.  Developmentally, between his first and second year, he began to lose ground.  In between his second and third year, he lost all of his words and became non-verbal.  It was due to not feeling well I was told.  “Don’t worry”, the doctors said, “he will catch up.”  After one particularly memorable series of vaccinations, given to my son while he had an upper respiratory infection, things took a turn for the worse.  I remember asking my doctor if we should wait and vaccinate when he was over the infection.  She told me it wouldn’t hurt him as the two were not connected.  For four days after those shots, my son ran a fever, wouldn’t eat, was incredibly irritable, and would just lay in his crib moving his head from side to side as he cried.  Looking back, I will always remember this as the time that my son’s life changed.  It’s hard to believe, but that was almost twenty years ago.

Raising my son has been an incredible journey.  There have been so many ups and downs.  No please don’t misunderstand, my son is one of the greatest joys and blessings of my life.  He is pure love.  But I would be lying to you if I said it has been easy.  And I don’t mean caring for my son, I am really speaking more of the feelings, thoughts and questions you have through the whole process of first getting, then dealing with, a diagnosis.  I remember the first person to say the word “autism” to me.  My reaction was to get angry.  Autism?  My son?  He was very interactive, loving.  He didn’t sit in the corner and bang his head.  This was my limited, stereotypical view of autism up to that point.  Fear.  Complete and utter terror.  That is what I felt when I first heard that word.  A whole new world was about to unfold before me.

At first, I spent a lot of time crying.  What did I do wrong?  This had to be my fault, right?  I stuck my nose into every book, every bit of research available at the time.  I hauled my son to one of the leading developmental centers in the country only to be told that he did NOT have autism and that he would develop just fine given time.  I enrolled him in therapy:  speech, physical, occupational therapy.  The opinions of the therapists were as different and varied as the health professionals.  It was so confusing and upsetting.  Was I doing everything I could for my son, or was I obsessing needlessly?  Judgement from others ran rampant.

Over the years we have tried just about everything.  Most of us are easy targets as parents anyway, always wanting what is best for our children.  Throw in a disability that remains a puzzle, with so many variables, and we are open season for all the cures, treatments, aides.  You name it, if it could possibly help, we will try it, buy it, promote it.  And through the years I have.  We have modified diet more times than I can remember.  We have done all of the therapies including music and horseback riding.  We have tried a variety of vitamins and supplements.  Has there been improvement by any of these?  Yes.  The most from dietary supplements and from chemical free products.

Today, my son has grown into a wonderful, young gentleman.  He is my hero.  When I consider everything he must hear, see and feel during a day due to his sensory issues I am amazed that he can keep up such a happy disposition.  He is almost always smiling.  He has plenty of hugs and kisses for those of us in his life and he will go out of his way to offer a hug or a handshake to a total stranger if he sees someone in need.  How he determines who is in need of a hug is a mystery to me but he is always eagerly embraced.  He is beautiful.  To me, he represents true unconditional love of others.  No judgement, just acceptance.  If only we could be more like him and other special people.

There isn’t a day that goes by that I don’t worry about my son and about his future.  There also isn’t a day that goes by that I don’t thank God for the privilege of being his Mother.

“You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil … you are the mother, advocate and protector of a child with a disability.” -Lori Borgman

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Comments
  1. Elena says:

    As SEN teacher, I see the struggles of parents who have special children. I will tell you the same thing that I tell them: being a parent of a child with no problem is as easy as not being parent. Many times, these parents are detached by the life of their children, they do not comunicate, they do not involve. But they are so eager to advice others! They see themselfes as perfect parents, having all the merits for the smooth evolution of children. But they do not know NOTHING. Parenting lessons? Who is more prepared and trained to give them?

    • My son is fortunate now (and I say now because it wasn’t so for most of his school years) to have a wonderful teacher who truly cares and loves his students. I am so thankful for the teachers in special education who really advocate and fight for their students.

  2. adventuresofjonluc says:

    You sound just like me. There is 4 years between my boys and I watch my youngest Thomas like a hawk when it comes to his development. It is so frustrating in a world where people do not understand. The looks you get from people when you go out and the money it cost to get them healthier make life stressful. Unless you have a child on the spectrum there is no way you can understand what it is like. I commend you for your going the natural rout. Our roads may be bumpy, but in truth our children are worth it.

    • People can be so mean even without meaning to be. The cost is incredible and the list of supplies, supplements, foods, etc., is usually long. Keeping the items he needs available is not always easy. Thankfully, more companies are making chemical free products now. Natural food stores becoming more common. Organic and preservative free foods are also becoming easier to find, although still expensive. You are so right – the kids are absoutely worth it! I wish the best for you and Thomas. Hang in there!

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