Those cute Mongolian eyes

Little Dia

When our journey through autism and therapies started, my education towards other learning disabilities in children also took off. Whether your child is autistic, has cerebral palsy, is MR or was born with down syndrome, mother's of children with special needs develop a certain bonding. All those hours that we spend in the parents waiting area while our children undergo therapies are spent chatting with each other, knowing each others' child better, going into the problems associated with a certain condition and lending a helping hand.

One of my first encounters at Milestones, where Avani was enrolled for an Early Intervention Programme was with Swati. I saw a young mother like me - hassled hair, no time for make up, dressed to walk fast, rushing down stairs at Milestones basement, struggling to control two toddlers with a maid in tow. One child was quickly dropped in the therapy room while the other played around near waiting area.

I was just about a week old into therapies and was obviously intrigued. As soon as I found a bit of breathing space in Swati's busyness, I asked what is she getting her kids here for? It turns out - Vihaan and Saksham are twins. By some stroke of extra ordinary fate, Saksham was born with Down Syndrome and Vihaan was a typical child! That justified the distinct Mongolian eyes and short demeanor of little Saksham. I didn't know much about Down Syndrome and decided to Google as soon as I was home. 

In simple words, Down Syndrome (DS), also known as Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops both mentally and physically. Normally, at the time of conception a baby inherits genetic information from its parents in the form of 46 chromosomes: 23 from the mother and 23 from the father. In most cases of Down syndrome, a child gets an extra chromosome 21 — for a total of 47 chromosomes instead of 46. It's this extra genetic material that causes the physical features and developmental delays associated with DS.

But aren't there tests during pregnancy to detect precisely this condition! How could Swati miss that? I asked next day and was told that because she was carrying twins, the test didn't show anything. Goodness! What rarity!

Saksham is responsible for opening my eyes to the special features of those cute little kids who look much less than their age and may take an extra year or two to walk and talk but are absolutely adorable. I know more Down Syndrome children now and have had the chance to observe them from close quarters and I have a feeling that DS and autistic kids can be perfect companions to each other.

I recently saw Avani play with Dia (5), another DS kid and a complete anti thesis of Avani. If Avu likes to stay all  by herself, Dia is so social that she can even drag a child like Avani to her world. One's strength is the other one's weakness. Avu is great in learning things quickly, while Dia takes her time, Dia is great in making friends while Avani takes her time. Avani can balance her body on anything, while Dia is still learning the tricks. If Dia and Avani grow up to become friends, am sure they will do great together completing the package! Supporting each other and learning to see life through an alternate perspective.

Yes, it is all about perspective. A child with special needs is no alien. He/she is just like any other kid.Taking their time to reach certain milestones, learning things in a different way and demanding special care. These little angels don't even know that some people make faces at their special features or pass rude comments when they pass by and some even go on to ask their children to stay away!

A child with special needs will still give you their most honest smile and unconditional love if you make only one attempt to accept them.

Accept difference and accept life...please.


PS: All names and pics used in this post are original, with the consent of the people written about.
Read more about DS at http://kidshealth.org/parent/medical/genetic/down_syndrome.html

New challenges, new beginnings...

Have been busy the last few weeks traveling, reading and arranging new therapy schedules for Avani.

Just like last year, 2015 has also started on a bit of a hectic note. There's a sense of urgency in achieving targets and doing whatever it takes. In my New Year blog I had mentioned how Avu's hyperactivity was our big concern. Her OT suggested we get a complete allergy panel test done to explore the benefits of control diet on hyperactivity and meet Ms. Saswati Singh in Dehradun. Saswati ji has a 26 year old severely autistic son, runs a centre by the name of Nav Prerna Foundation for autistic children and adults and is an ardent believer and follower of CFGF diet. This lady's struggle with her son for almost three decades and her experience in handling children on the spectrum was a real eye opener. We came back from Dehradun with the knowledge of 'risky' foods that trigger hyperactivity and Avu's allergy test results.

Our next stop was Mumbai. A friend strongly recommended a homeopathy doctor who has been working on cases concerning autism. Dr Ditpti Kotyan, came across as a very genuine, knowledgeable and straight forward person. For me the real breakthrough was to be able to open my heart out to her. Almost, all homeopathy doctors go into deep details of the case, but the way I could open up and speak frankly about autism's effect on not just Avu's life but our life as a family shocked me. I needed a bit of counseling, I needed someone to tell me that am doing my best, I needed someone to tell me that I have to take care of my health too and I too deserve a good rest and sleep. She did all of that besides listening patiently to me and assuring me of best treatment for Avani. The immediate target I suggested for Dr Ditpi was to set Avani's sleep pattern. I pleaded her that I have truly had enough, breaking my back carrying Avu through endless nights on my chest. How can I feel rested if my entire body is sore from the ordeal by next morning? And am sure, if sitting straight all night with Avu in my arms is hurting me, then it must be hurting my little girl too, how can she feel rested by sleeping in sitting position?

Traveling to Mumbai and staying at a friend's place gave me more insight into the issues still haunting us.While sitting in the aircraft was not a problem with Avani, waiting at the airport, seems to be our biggest challenge. Her favourite snack, i-pad, crayons, sticker books, nothing at all could hold her in one place at the visually stimulating airport environment. She wanted to run in open spaces and grab those shiny wafer packets. Nothing unusual for a typical four year old too, but at least they would respond to their mother's shouts? We somehow managed through the ordeal. I was grateful for a friend to let us stay in her house for a night before we met the doctor. Her son is as old as Avani and was so curious to meet her. He opened his toy cabinet for Avu to explore. But Avu was fixated with scented candles in her house and was only interested in an alphabet puzzle that the little boy brought for her. What struck me the most was the fact that all the while we stayed at my friend's appartment, Avani didn't give Kabir any eye contact! She perhaps did not even register that he was trying to play with her. Socialisation and communication are two of our weekest areas like a lot of other children on the spectrum.

But Avu is certainly communicating better with me. I no longer have to remind her to look at me while talking. Whenever, she answers a question, eye-contact comes automaticaly, if she doesn't know the answer, then her eyes probe mine for a clue. When we were taxiing our way to the aircraft at Mumbai airport, Avani suddenly said circle looking out the window. I figured she was pointing towards the dot of letter 'i' which was painted on the window and was visible from where she was sitting! That brought a big smile on my face and all my struggles at the airport were lost in that moment.

We came home with a new set of medicines, a new set of problems to look at but with renewed motivation too.  All this while I have been reading a book by Kristine Barnett. 'The Spark' is about how Kristine Barnett nurtured her Autistic son's genius and proved all 'experts' wrong when they told her that her son would never be able to read or talk at age three! Jacob Barnett is at the moment youngest physics prodigy in the world, is working on an original theory in physics and could be in line for a Nobel Prize too.

Now that's some motivation. Not every autistic child is a prodigy but every child - autistic or otherwise, has a talent. I just need to explore it in Avani. Am not going to give up ever, and I firmly believe that its only a matter of time before my girl surprises me with what she has.

Meanwhile, we have also started ABA therapy for Avani in a new learning center called BMI or Behavior Momentum India. She is going to BMI five days a week for same hours as a toddler would spend in pre school. Hoping to expand her communication skills further, I have trusted BMI to work on my kid. And once again I have put faith in my instinct. Let's see.

 

A picture I took in Mumbai at sun rise