The author’s children are high functioning autistic. The term “autistic” used with her children felt wrong as if she used that as a label to get things to work. In medical terms, nothing like high-functioning autism exists. But, Wikipedia defines high-functioning autism (HFA) as a term applied to people with autism who are deemed to be cognitively “higher functioning” (with an IQ of 70 or greater) than other people with autism. Anumita, our Managing Editor, shares the highs and lows of dealing with her problems, as a Special Needs mother, in the Special Feature, exclusively for Different Truths.
The first time I took my child to a Special Olympics Practice session, I felt like a fraud. My child was not like most over there. He could walk the talk and do things a most neurotypical child could. I scanned the face of the parents there to be sure I was not being judged.
In my day to day life, I would be getting a comment like, “Your children do not look autistic,” “They must be cured of autism,” and “I did not know your children were autistic.” They are all well-meaning individuals with an opinion of their own. To their queries, all I can say is that they are on the spectrum. I feel like a misfit on both sides.
My children are high functioning autistic. The term “autistic” used with my children felt wrong as if I use that as a label to get things to work. In medical terms, nothing like high-functioning autism exists. But, Wikipedia defines high-functioning autism (HFA) as a term applied to people with autism who are deemed to be cognitively “higher functioning” (with an IQ of 70 or greater) than other people with autism.
During the days when my children were still in elementary, I confess, I had blamed myself and the whole world for their diagnosis. I had shed tears (still do) secretly as I was scared about their future. I feared for them that they would not be able to be successful individuals and this haunted me.
My life has changed rhythm, meaning, reason and goal since my children were diagnosed with Asperger’s and Pervasive Development Disorder Not Otherwise Specified (PDD-NOS).
While reading through some articles recently I found out that the new regulations under DSM-5, the terms “Asperger’s and PDD NOS” are now bundled up under a category called the Autism Spectrum Disorder (ASD).
When did this happen? I did not know, and I have been using the term “Asperger’s” while it has been dropped out from the chart of diagnosis. I need to do my homework from time to time. A feeling of guilt creeps in as I missed out this portion of the news. I should have been on the top of it.Am I doing enough? A question which constantly dogs my consciousness. Self-doubt often becomes a good friend and the fear of failing my child never leaves. As I know that most days are just days, and the day the crack shows, I just cannot fill them up with truckloads of patients.This makes me perpetually tired and mentally exhausted.
A Friday plan with my girlfriends may often not materialise. Days before a community event has an extra stressful edge, as I may not know which child will bully him. The result becomes withdrawing from socialisation. A self-inflicted isolation, which is unhealthy and often lonely.
Loneliness is not only from friends, coworkers, and society, it takes place inside the four walls of the house too. Often the stress of children with special needs (especially the hi-functioning autistic) put a huge amount of stress on a marriage. The dedication of one partner causes an imbalance between the partners.
I have gone through all the facts mentioned above and some more.
Then there is the factor of special food, therapy, and medication.
When your child is on a medication for health reasons, it seems to be justified but when your child needs medications to keep him calm, collected or sometimes zombified, it breaks your heart all over again. It is never a decision you made easily and willingly, but then sometimes it is impertinent.
Take the meds (sometimes with the meds) off their daily routine, then special therapy takes its place into the busy schedule. With the high functioning autism kids, it becomes very difficult to place them in regular autism therapy. They may be way advanced for some of the classes and for some, they just do not match the prerequisite.
I had one of my children attend a brain balancing program. It ran for a length of almost six months, and it drained our bank immensely. One big reason, which causes families to get stressed out is finance. A special needs child requires funds. And by funds, I mean a lot of money. There are institutes and grants for such funds, but their requirements are very stringent. Often children with high functioning autism do not even get close to the requirements. With the result, often the children forgo the services.
With all the trials and tribulations, we moms are found crying silly at the small victories our high functioning autistic child achieves and cry our hearts out with the numerous downfalls. These victories and failures are lived alone.
In all this nurturing, we are the one who is forgotten – the moms. I am guilty of such crime against myself. There was a period of my life which I forgot I existed. With my children going through all their highs and lows, I became a part of their day. But, with the passage of time, I realised that if I am not happy and content, I would not be able to give them happiness.
Learning to love all over again is like being born all over again. It is a fight that I was chosen to fight. Mother of two high functioning autistic boys, I take immense pride in helping mould two wonderful individuals with a unique form of mind.
To all moms with high functioning autism children, you are not a fraud. You are a special warrior in the battle of life. Cry when you need to dissipate the load on your heart. Laugh a lot and make time for yourself, and believe me that is not being selfish. My heartfelt wishes for your success and may you celebrate the special gift you are helping to become successful individuals.
©Anumita Chatterjee Roy
Photos from the Internet, sourced from the author
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Informative, well written, touching. A mother willing to move mountains for her children.