Many of our readers on PatientNextDoor have probably seen the movie Rain Man (1988, starring Dustin Hoffman and Tom Cruise, directed by Barry Levinson) or Forrest Gump (1994, starring Tom Hanks and Sally Field, directed by Robert Zemeckis.) Continue reading “The Worldwide Human Phenomenon of Autism”
A few days back, while I was browsing the aisles of a store, my 9 yr old son brushed against another customer. I was hoping it would not be a big deal but she had something else in mind. I said sorry and explained that my son is autistic. She was not ready for that excuse and said that if that’s the case, I shouldn’t “let him loose” and that she has been watching me let him “walk free “!!! My son has a tendency to wander off so I’m hyper-vigilant and ensure that my son is literally at palm’s length from me. So clearly, he was not running amok. Besides, he has issues with personal space so he tends to reach out and touch people who come his way every once in a while. While not many people take offence , there clearly are some who feel extremely overwhelmed by coming in contact with a 9 yr old and make sure they are taken to task for that.
Continue reading “This is why I will forgive”
Many parents look forward to the back-to-school time every year. For parents of neurotypical children, it’s a chance to finally have the house to themselves after a long summer vacation. For parents of children on the autism spectrum and other children with special needs, having a “parent break” is also incredibly important, but many parents face an uphill battle with the school system every year when it comes to specialized education and care for their child.
Continue reading “A New School Year and the Special Needs Child”
Those who know me think, as a mom of a child with autism, I’m generally positive in my outlook. I would like to believe that is true. However, in me hides a realist–not to be confused with a pessimist. The realist me rears its head every now and then and I kick it back in, hoping it will stay there defeated and quiet. But some days it bounces back with so much strength that it clouds the sunshine in my eyes. Even on those days I listen to it’s whispers, quietly shed a tear, and go on with my life pretending it’s all going to be ok, and it might, but it leaves behind that doubt that lingers on — a doubt that forms a knot in my heart and makes it a little harder for me to breathe. It was one such day when my optimism had to bow down before my realist self.
If you are a parent of a child with special needs – Autism or otherwise, you know that the tug-of-war between the school and the parent is real and stressful. The IEP meeting every year is something all of us dread. You probably attend seminars , ask for ideas in Autism groups online, read various tips and tricks, try talking to a family advocate and gear yourself for the D-day . I’m guessing, the school ,on its part, does a ton of meetings and collaboration to come up with an IEP that they believe is practical and effective. Same goes for almost everything that involves your child and the school. There seems to be a constant back and forth trying to figure out what is best for the child. While every school year is an opportunity for the students to grow, it is also an opportunity for the teachers to learn more about the kids who need that extra attention because of their challenges.
If I was asked what I would want the school to know about my child and Autism in general, this is what I would say:
Autism was a word barely known 20 years ago, with America’s only real reference an award-winning performance of an “idiot savant” in Rain Man. Projection rates and real calculations vary, but the Autism and Developmental Disabilities Network reveals a startling 78% increase in autism spectrum disorder (ASD) diagnoses between 2002 and 2008 alone. The cost of autism is high, with economic costs falling in separate categories of direct, indirect, and intangible.
Continue reading “The High Costs of Autism”
Before my son’s diagnosis of Autism, I had never even heard about the condition. No one in my family was familiar with it and I knew of nobody who had this diagnosis either. So I started with a blank slate, with absolutely no idea what to do, how to deal with its plethora of challenges , who to reach out to or where to start. I had no clue if what I was doing was right or wrong. Just as my successes were my own, so were my failures. We, as a family, learnt along the way as we experimented with different things. Over the years we’ve perfected a few things or so we think and there are some that we are still trying to figure out .
Continue reading “8 mistakes I made as a mom of an autisic child”
Current estimates reveal that approximately 1 in 59 children will be diagnosed with autism spectrum disorder, commonly referred to under the blanket term “autism.” Autism is a spectrum, and there are other similar disorders that fall under the same umbrella, such as PDD-NOS (pervasive developmental disorders, not otherwise specified). In an extremely young child, such as a toddler, these other disorders may present as an autism diagnosis. As the child becomes older, a proper diagnosis is more abundantly clear.
Continue reading “Early Intervention and Autism”
In 2003 our boys, Adem and Eren, were diagnosed at 15 months old with autism. At the time, we found very little information available to figure out what to do. Not only did we have difficulty finding a playbook, we also didn’t know what to feel. I remember getting off the subway on my way to work because I couldn’t handle watching a father embarrassed his little girl was singing him a song she learned in school in public. How can you be embarrassed? I haven’t even heard “Mommy” yet.
We often hear about the work of care givers, the hardships and sacrifices made in the process of caring for those they love, but it is rare to hear from those who need that care and the perspectives from that side.
I am 49 years old and autistic. These days, my symptoms are minimal, but that wasn’t always the case. I was developmentally delayed in many ways, in language, motor skills and intellectually. I did not speak until age four and required several years of speech therapy. Many simple physical skills also eluded me, such as tying my shoes or those requiring balance, like riding a bike or even running in a straight line. This was the 1970’s though and mild to moderate autism was seldom officially diagnosed. I was just considered ‘slow’ by adults and ‘weird’ by other children.
The other day I was talking to a complete stranger at my son’s summer camp’s bus stop. We chatted like old friends meeting after years.There is something that bonds us all together…the experiences, the pain, the joy ,and the lessons. There is so much to share. We finally parted, promising a lunch date along with some spa time…knowing well, it was easier said than done 🙂
On my way back, I thought… I was never the kind of person to just approach someone and start talking. I preferred the comfort of familiarity. And today, here I was, chatting with someone I had never met and feeling the most at ease about it. It got me thinking – my son’s diagnosis of Autism has changed me as a person. It was time I gave Autism it’s due.
Continue reading “How my son’s autism changed me”
I’m not a supermom but I get that a lot. Having a child with Autism does not make me one. Please let me be weak and let me cry, let me make mistakes, let my guard down, and let me just be a mom, a wife ,a woman, not a “super-someone”.
The day Vedant was diagnosed with Autism, life handed me a cape and said “now you fight and never stop doing so”. But there are days when I’m exhausted. I want to simply kneel down and wish that never again should a mom have to fight for what is rightly her child’s and hope that the world will be more sensitive to any child who has challenges.
Continue reading “I’m not a supermom”