Zoo trip...Not for us...

These days am reading about the importance of Dynamic Intelligence in our day-to-day life. Obviously the reason for expanding my understanding of DI is that it is found to be absent in kids with autism. Life changes every second, the plans we make now, may not be relevant the very next moment. How to make sure that our kid's rigid thinking (a strong trait in ASD) will not hamper her decision making in future? How to make flexible thinking possible for her? How to prepare her for life's uncertainties? Am reading about it and will shortly follow a protocol that will empower me as a parent to instill such thinking in that little brain.

As adults we may be good at dynamic thinking but is it any easy for us to 'digest' an unfavorable change in situation? Certainly not. My plan was to take ten days off at the beginning in July and adjust Avani to school. She will happily take to school life and we can look forward to making some gains in her social development.

So on day 1 itself, the plan falls flat! Avani wakes up with viral. Cold, cough, fever, diarrhea...all stand in our way of a happy plan. Priority shifts from school to health. It goes on for another 20 days with just a little exposure to school. Obviously, this was not going to be enough.

The school is taking Avani's class for a trip to the zoo. But the teacher is apprehensive of taking her. Heartbreak on one side, practicality on the other. The class teacher is right when she says that she has not had enough opportunities to develop a rapport with Avani. I am right to feel sidelined too. When all her classmates would be enjoying the outing in Zoo, my girl would be wasting her time at home. Dynamism of my brain, its flexibility and its ability to register all impacts of a decision being put to test once again.

Will my child be able to cope with such challenges in future? Is it even possible for someone on spectrum to accommodate so many unexpected developments? A therapy protocol called RDI (Relationship Development Intervention) says it is!

We have enrolled on the program and my efforts are now gonna be directed towards that goal.
No zoo this time around baby, but mumma will make up for the loss soon.

The wheels on the bus go round and round...

Its been a really long while. We are still settling down in our new home. Settling down for us is much more than just fixing the house and placing the furniture. As expected, there has been a rise in Avani's tantrums and mood swings. Cutting down on therapies has also resulted in an increase in hyperactivity and attention deficit.

Am missing the comfort of seeing the child progress in the care of professionals. Now everything is home based and obviously mommy-based. So far even I was more than occupied in arranging the house but now, as chores give way to mommy duties, am feeling the heat.

We haven't seen any regression in Avani's core skills but making new progress has been difficult I have to admit. She is just about killing time all day and then looks forward to swimming in evening desperately. Her body clock is set for 4:30 PM, when we start getting ready for the swim and if we are forced to skip it for any reason, then God save me the massive tantrum.

By the way, why do I feel like crying every time she is in pool? No, no miracle has happened. She hasn't championed swimming in flat two days and is on her way to becoming a child prodigy. In fact, swimming is not swimming exactly. Its just about floating around on her own and enjoying the water. The world belongs to children who are vocal. I think I cry because its a pain to see your child float around alone in some corner of the pool using accessories while all other kids her age are engaging endlessly with the coach. While they ask him multiple questions and do as he says, my kid pushes him away even at the feel of a touch.

My job is to just get Avani to the pool and then watch her from the side and sulk. But at least we do manage to use some energy in the process. That's the only positive take away.

Oh wait! Schools starts from the 1st of July...s@*#.. Yes, mainstream! zzzzz

Sometimes plans fail you...so plan again!

May 2015 is proving to be quiet an unpredictable month. We started the month with a bit of rescheduling of therapies for Avani, introduction of a new speech therapist and finding a swimming coach. After much hard work and help from a few friends, I managed to find a coach who works with children in the spectrum, had an informal discussion with him and almost fixed a time to start. But destiny was playing its part at the same time.

All of a sudden, our landlord decides to sell off the house we are staying in and serves us the notice to vacate within a month! Shock, confusion, anxiety, panic attacks follow. Shock - because we had no prior warning of this. Confusion - where to go next? Close to Avu's school and therapy centers or far?
Anxiety - What happens to our settled/structured life? Panic - will this uprooting affect Avani negatively because there will be too many new things to cope with?

While Avani has not really shown discomfort with new situations and new places in the past, am still a little skeptical about how will she take to our new home. From July onwards, she starts with a mainstream school as well - another new situation and through out June, her therapies may suffer because of our shifting.

We have been lucky with a lot of our therapists being extremely helpful and considerate. Going on to help us in shifting and helping us find new therapists near home. But then there are other 'types' too. When there are a multiple things crowding your brain and sending shivers to the parent in you, the least you expect from your child's therapists is not to scare you further. But there are a few who are perhaps more concerned about the financial loss they would suffer because of a child pulling out, so they try there best to highlight as many challenges in your child as possible.

I know Avani needs all of the current therapies whether it's special ed, speech or Occupational Therapy. I know there is a very real possibility of she slipping a bit on the progress we have made, particularly in the last one year. I know it is a dangerous step specially coming just ahead of her schooling. But how many options are you really left with when your landlord decides to take his house back? Am I supposed to beg him to allow us to stay a little longer because of my child's special needs (which he is aware of anyway)?

However, now that a change in accommodation is inevitable and our new place is going to be quiet far from current therapists and centers, things will require fresh planning. Am doing that already, am open to becoming a full time therapist for my child. And we are also going to try a new therapy approach called - RDI (Relationship Development Intervention), that aims to train a parent in helping the child overcome several social and communication deficits. More on RDI later and hopefully from our new place :) wish us luck!

Am banking on crayons to keep us engaged and happy!

Learning to read!

At the beginning of April, I attended a workshop on teaching children with special needs to read. That's right, our children, who may be Autistic, ADHD, ADD, PDD-NOS, CP, DS or having any other developmental disorder can learn to read even before they learn to talk properly! This work shop was an eye opener and liberating at the same time. The trick is to approach it through 'sight reading'.

Sight Reading simply put is a technique where the child picks up a word as a whole, instead of learning it by joining alphabets together.

Learning all 26 alphabets of English language and then sewing them together in different combinations could be quiet a task for children with special needs. That's why the traditional method of learning doesn't apply in our case. Like several other things, our children learn reading too in a special way. Approach is simple, application requires a bit of hard work but results are magnificent! Trust me!

Natali Hale is a US based reading expert. She has a 30 year old DS son, who is also severe ADHD. So when someone with that kind of experience shares a trick, you gotta listen!

At the beginning itself, Natali answered the most difficult question - "How do you teach reading to a child with special needs?' Answer - "You go in through the heart and teach to the brain."

This is how it goes - "We target the child's dearest interests, the people or things he loves best, as topics. Using those door-opening keys, we design materials that are extremely brain- friendly- that is, easy for the brain to grasp and retain. We use elements that use extremely large type, a high focus format, visual separation of text and pictures, and we teach words quickly with the Fast Flash Technique."

There could be a few technical words here, that you may not get immediately but lot of resource material and youtube videos are available for further guidance.

My task soon after the workshop was to identify Avani's high interest topic and voila! it is the "PASTA". Avani simply loves it!

So our first story was about 'Pasta Time'.
Here's a simple story for a beginner -

Title - Pasta Time

This is Pasta
Mummy cooks Pasta
Give me Pasta
I eat Pasta
Pasta is yummy
The End

Yes, it is as simple as that! You repeat the high interest word in almost every sentence. Keep it very simple and basic. Make flash cards of all the words used in your story in a large font. I used 72pt and use red ink while printing. Flash them in a set of five cards at a time - read the story - flash cards again and let the child go and play!!!

Try and do this about thrice a day and make it fun for the kid.

Few things to remember -
1. Flash cards have to be fast flashed to the child - which means one card per second.
2. While making the story book, one page would be only the sentence.
3. Repeat the same sentence below a relevant picture on the second page.
4. Use only the right side pages, leave left side blank.
5. I use black ink and a smaller font for the sentences on the book. This helps in generalizing the words. But you are the best judge for your child.

So in about a month's time, Avani has about 15 new sight words in her memory. Every child will progress at their own speed. Most autistic children are anyway visual learners, so for them learning the word will not be an issue but sitting and paying attention could be a task. For children with DS, you need to make sure, their eye sight is not a hindrance and it may require a bit more of repetition for memory to register. But don't lose heart if the child doesn't show progress at the start. Natali showed us videos of some of her clients, and it was super impressive.

It really made me believe that 'anyone' can learn to read, we just need to be persistent in our efforts. Once the child is taught, there's no looking back. Reading to talk is the next stage. Natali says, don't worry about comprehension at this stage. Even when we read a new word, we may not know its meaning as per dictionary, but we learn its usage with practice. The same applies to our kids.

As I taught Avani 'Give me pasta', she is slowly learning the meaning of 'give'. We are generalizing it with other things that she demands all day long. And need I say, am giving her functional language? Its obvious!

So parents, here's another tool in your armory. Use it and see your child prosper.

PS - http://specialreads.com/teach-reading-down-syndrome/natalie-hale-speaker/

“We target the child’s dearest interests, the people or things he loves best, as topics. Using those door-opening keys, we design materials that are extremely brain-friendly—that is, easy for the brain to grasp and retain. We use elements that include extremely large type, a high focus format, visual separation of text and pictures, and we teach words quickly with the Fast Flash Technique. That’s how we do it.” - See more at: http://specialreads.com/blog/?p=3827#sthash.Hd9N8fEA.dpuf

“You go in through the heart and teach to the brain.” - See more at: http://specialreads.com/blog/?p=3827#sthash.Hd9N8fEA.dpufYou go in through the hje

“You go in through the heart and teach to the brain.” - See more at: http://specialreads.com/blog/?p=3827#sthash.Hd9N8fEA.dpuf

“You go in through the heart and teach to the brain.” - See more at: http://specialreads.com/blog/?p=3827#sthash.Hd9N8fEA.dpuf

“You go in through the heart and teach to the brain.” - See more at: http://specialreads.com/blog/?p=3827#sthash.Hd9N8fEA.dpuf

Autism Awareness Month - mixed feelings

April is celebrated/observed as World Autism Awareness month. Not sure if its a celebration for families who are on the spectrum or a rude reminder that they belong to a different world all together.

Have been reading a lot of blogs and articles this month. Blogs on information, awareness, remedies, stories of life affected by autism. I am literally eating and sleeping autism this month! A few have left a deep impression on me -

First one was a mother's address to people outside autism to "take a step towards understanding those in the spectrum and the ones around them."
https://raisinganonconformist.wordpress.com/2015/04/02/on-world-autism-day-i-write-about-you-not-him/
Her each and every word resonates in the heart of every parent who has a child in the spectrum.

Then another mother's plea who's three daughters are autistic and she 'despises' autism awareness month. "For all three, I have to cut their food, tend to their monthly feminine needs, and bathe them. They will need that daily living assistance forever; when I die, a stranger will have to do those things for them. That is why I bristle at the festive tone of April, the suggestion that the circumstances of my daughters’ existences are to be celebrated. For me, this should be a month of solemn acknowledgement and education about a global crisis." - these lines sent shivers down my spine.
http://www.washingtonpost.com/posteverything/wp/2015/04/02/my-three-daughters-are-autistic-i-despise-autism-awareness-month/?tid=trending_strip_1

And finally, a piece by an autistic adult Judy Endow, who talks about why Autistic Adults don't look like Autistic Children. http://www.judyendow.com/autistic-behavior/autistic-adults-do-not-look-like-autistic-children/

Then the other day on metro, did I see an Autistic adult?

I might be wrong, but Judy Endow's lines from the blog were repeated right in front of me! Others around us might have just thought of her as a little weird but I knew that there's something more to it. The unguarded burping, the loud crackling of water bottle and then squeezing it to drink the last drop of water, the constant mumbling and looking lost in her own world can't go unnoticed for a women aged around 40. She might have learnt to control her body better but her sensory needs were clearly driving her behaviour.

It was an overwhelming month of Autism Awareness even for a family dealing with life in the spectrum 24/7. But here's the difference, some people read about Autism, some try and understand, some promise to help but those of us who live autism, can hardly afford to waste time. You are always racing against time to achieve some target or the other with your child.

April also happens to be the month when new academic session starts. Doting parents putting pictures of their kids wearing school uniform and sharing experiences of first day at school was splashed all over fb. Siiiigggghhhhh....happy for my friends but more heart break for me. I also have a child aged just right to go to school, but we will have to time it a little differently.

An update on that front coming soon.

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