Monthly Archives: April 2011

The Suggestions Autism Inspires

I have been trying to find a probiotic that Emma might be willing to take with little success.  Yesterday I asked the man in a health food store for help and when I mentioned it was for my autistic daughter he asked the usual questions regarding her diet (limited), her activity level (high), etc.  I am usually reluctant to get involved in such a conversation as I am almost always inundated with well meaning advice.  Advice that has little, if anything, to do with my original question and advice I have received by literally hundreds of people in the last seven years.  Yesterday proved no different.

“You need to train her to eat healthy foods,” he began.

I smiled in response while remembering the last time we attempted to get Emma to take something she didn’t want to take.  It took three adults holding her down, while I tried to force a spoonful of antibiotics in her mouth.  She writhed around and blew the contents of the spoon out of her mouth with such force it hit me in the face.  Richard stood up at that point and said, “We can’t do this.  There has to be another way.”

My face dripping with Emma’s saliva mixed with the pink sticky antibiotics we had forced into her mouth, I was inclined to agree.

“She should eat only raw fruits and vegetables,” the man in the health food store continued, warming to his subject.

I stared at him and said, “I really am just interested in finding a chewable probiotic that she might actually try.”

Undeterred, the man continued and then said, “You should call this man, he can help your daughter.”

“Is he a doctor?” I asked.

“Oh no!” the man said, looking horrified.

“Is he a specialist in autism?”

“No, no, nothing like that,” the man said, scribbling down a name and phone number.

“So who is this person?” I asked.

“He has vitamins, special vitamins,” he answered.

I looked around the store.  A store well stocked with vitamins of every kind and said, “Look, I am sure this person is a lovely human being, but I don’t need vitamins at the moment.  Thank you anyway.”

“No, no, this man is different,” he said as I turned to leave.

“They always are,” I answered.

Over the years I have had conversations with so many people I can no longer count, exactly like this one.  During those first few years I even took Emma to a number of people I had heard about from others, who claimed to have some inexplicable cure, vitamins, tinctures of homeopathic remedies, healers, people who I am sure believed that what they were doing could and would make a difference, and perhaps they did for someone else’s child.  But whatever it was never made a difference for Emma.

I have had people contact me insisting their child, nephew, grandchild was miraculously healed, began speaking in full sentences etc. as the direct result of whatever magical potion they were telling me about.  It’s not that I think all these people are making up success stories, they are far too passionate for that, it’s that I have heard so many of these stories, literally hundreds of them and they are always of something different.  Each remedy is an anecdotal story of a child the person knows, and yet I have never been told about the same remedy working for anyone else.

One of the things I have learned over the years is that one can spend every last dime one has on these potions, healers, etc. and there will never be an end to it.  One can spend every moment running from one referral to the next, one remedy to the next and there will always be a new one around the next corner.  At a certain point, one cannot continue to investigate every single suggestion given, it simply is not possible from a financial standpoint or time-wise, but most importantly – one must ask the question – what is this doing to my child?

I have no doubt the man in the health food store genuinely thought he was doing me a tremendous favor by telling me about his friend.  What he couldn’t know was that I have hundreds and hundreds of scraps of paper with names and phone numbers scribbled down of people just like his “vitamin man”.

After I left the health food store I was able to locate a chewable probiotic at Whole Foods that miraculously, Emma was willing to chew.  I will see if it makes a difference, though I am not holding my breath.

For more on Emma’s journey through a childhood of autism go to:  www.EmmasHopeBook.com

Birthday Parties

Birthday parties, anticipated with great excitement by neuro-typical children, are something parents of autistic children often dread.  Many autistic kids have sensory issues, which cause them to crash when they are over or under stimulated.  Emma has both and it’s impossible to predict what might trigger her.  Crashing for Emma can mean perseverating on some seemingly insignificant thing – a missing photograph, a stick she picked up and by mistake dropped, a portion of packing tape, a magazine no one knew she cared about that was inadvertently thrown away.  These are the things she uses to calm herself and there’s nothing like a party to trigger the desire for items used for self-soothing suddenly and without warning.  In the past we have witnessed all of the above as well as her wanting something we cannot understand and therefore cannot help her find, which leads to crying or worse, a full melt down.  When in the later mode, we must physically remove her from wherever we are and get her home as expeditiously as possible, something onlookers find baffling and frightening.

A few years ago Emma was invited to a little girl’s birthday “Tea Party”, which took place in the Rose Club of the Plaza Hotel.  Red velvet banquets and gold gilded chairs with couples speaking in hushed tones made me inwardly groan, when we arrived.  How was I going to keep Emma occupied?  What if she was disruptive, unable to sit still?  When the menu was delivered I barely went through the motions of opening it – what was the point?  I knew she wouldn’t eat anything from the menu.  I had the foresight to bring food I knew she’d eat and just hoped the service was quick, given there were eight little girls with a variety of disabilities attending.  My memory of that party is of running after Emma and trying my best to keep her from jumping on the beautifully upholstered furniture or sliding down the marble banister, Mary Poppins style, while avoiding the glares of the hotel staff.

The only other party to rival that one was when Emma turned four.  Given Emma’s love of music, we hired a musician to come to our apartment. We invited a number of children from her special education preschool as well as some neuro-typical children Emma and her older brother, Nic had known since they were babies.   Emma spent most of the party attempting to lie down inside of the musician’s guitar case as the other children danced, ran around or sat politely listening to the music and singing along when appropriate.  My husband, Richard and I took turns excusing ourselves and each went separately into our bathroom where we allowed ourselves a few minutes to cry, before mustering up the strength to return to our guests, doing our best to act as though everything was fine.

That was also the year we had been called into a parent/teacher conference at her special education preschool only to be told our daughter’s development was a “red flag” and that she had “flat-lined”.  It was a tough year.  A year Richard and I still refer to when we feel doubtful of Emma’s current progress.  That year marked a time of desperation, sadness and a general feeling of impotence on our part.   It seemed whatever therapy we tried, whatever medical interventions we took on, nothing made a difference.

Emma’s most successful birthday parties have been when we’ve rented a gym, as we did a few months ago for her 9th birthday (we’re learning) or when we’ve planned the party in some other equally active place.  This past birthday, we rented a gym for her birthday party and the following day took her and Nic to Bounce U in Brooklyn where she ran into a friend from her special education school and everyone had a blast.

Emma at Bounce U

For more on Emma’s journey through a childhood of autism go to: www.EmmasHopeBook.com