Saturday, 7 May 2016

This one is for Mothers...

Its true that you become a mother as soon as you conceive a child, and that selflessness, the maternal instinct, the strength and courage of character kicks in as soon as you hold a little life in your hands. When you feed her even if your nipples are cracked, when you console her even if you are crying, when you comfort her even through your own discomfort, when you pray that she gets a good sleep even if your own eyes are swollen due to lack of it.

Avani's arrival was the smoothest thing perhaps. No trouble during pregnancy and with the C-sec also conducted perfectly, I don't remember a single bad day during those nine months. Just like every mother, I remember all the firsts clearly. The first time I saw this little child freshly taken out of my womb, first time I tried feeding her, her first touch, her first poo, her first smile, her first crying episode...everything.

But I think my journey to becoming a mother actually began with her diagnosis on ASD. Lot of people appreciate what am doing and how am handling the situation and my answer always is, 'any mother would do this'. When your only option is to accept and work hard towards making your child's life meaningful, then you can't have the luxury of choices.

It's about two and a half years now into therapies and understanding Avani's condition. I have not only seen massive improvement in her but I think the biggest achievement has been my transformation into a person that I thought I could never be!

First lesson that a child on spectrum teaches you is 'Patience'. No matter how much I shout, how much I get frustrated, angry, irritated, if Avani has decided to not respond to her name, then there is no way that I can reach her without being patient. I have to slow down, bend down to make eye contact and repeat her name with an inviting smile to get her to respond.

Second lesson is that when it comes to your child's needs, you cannot let your ego come in picture. You gulp down your ego, every time a therapist tells you how your child is full of 'issues'. You kill your pride every time a professional tells you to make innumerable calls before you get an appointment. You learn to ignore those inquisitive looks from strangers who judge your parenting while your child is throwing a tantrum. You tell yourself 'its ok, its ok' a thousand times when little kids in the park refuse to play with your kid.

Yeah, It's OK!

And I think the biggest lesson, I have learnt as a mother is that you choose your fights carefully.

With ASD kids, you have so many 'big' issues that so called 'small' ones need to be dropped. I have learnt to priorities my fights. I don't argue when class teacher complains that you child doesn't sit. I know she doesn't and I also know it can be equally a judgment on her teaching and talking method, but I don't correct her. I don't care if a little kid says that Avani screams loudly some times. I know she does, and I don't think that its worth explaining a 4-5 year old the difficulties Avani has with sensory processing. I just admit and tell them that I will make sure Avani doesn't do that to scare them next time.

However, it is also important to identify what is worth fighting for. Its only obvious to give up easily when you are so overwhelmed by circumstances. But don't do that all the time. You fight when you MUST. You fight like only a mother can.

I become Avani's advocate as soon as I sense that she is being excluded from some basic childhood experiences that she deserves. I take up a fight with anyone who questions my child's abilities without testing them. I also don't take illogical arguments to keep her away from her basic rights whether it is related to education or entertainment.

On this Mother's Day, can I please request all the mothers to choose to speak up. Speak up for anyone who needs you - your child or mine. Speak up against any wrongdoing you see around you - whether it affects you or someone else. Speak up to not just protect your own child but also speak to your child if you feel the need to protect another kid. For its only a mother who can understand selflessness, affection and compassion like no one else.

Saturday, 5 December 2015

Thank you 2015...

I know I have taken rather long to come back to blogging. Actually, I had no idea where to pick up from. Avani's birthday as always serves as motivation.

She'll be five in less than week. I remember last year I was wondering when will my child start enjoying her birthdays, start placing demands, start sharing experiences, start having play mates etc etc... No, that is not going to happen on this birthday either. We are far from it even now.

After shifting to our new house, Avani's therapies took a serious hit. Not many options are available near by and old therapists with whom she had settled well are being missed. She gets a lot of time on her own or with me and a lot of times we did not know how to use it. She has become a reluctant talker. She knows a lot but evades prodding. Confusion prevails when we force her to 'say' something while placing a demand. Clarity and articulation in speech is another issue. I was desperate for a speech therapist who can particularly work on desensitizing her oro-motor issues. Have found one too but we are yet to get sessions from him.

But while the wait continues, there is no denying the positives. Avani is more aware, better coordinated, better understanding and command following across situations. She's cooperative with class teacher, sitting in peer group and picking up new things in day to day routine. Nice to see my child observing everyone so closely - mummy, daddy, kids in the class, in the neighborhood, in the apartment lift!!

In a way its good that Avani's birthday comes in December. It can be hard to ignore depression of unfinished projects and underachieved targets at the end of the year. But a birthday is the beginning of a new year. We will make up for the lost ground this year and we will again find motivation in hope. Hope of seeing our lil girl play, laugh, talk and live heartily.

Am going to put a picture of Avani at three months in her father's arms. A time when we were in our babymoon, unaware of any diagnosis, exploring our child and enjoying parenting.



Wednesday, 22 July 2015

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.

Sunday, 28 June 2015

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


Saturday, 23 May 2015

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!

Wednesday, 6 May 2015

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

Wednesday, 15 April 2015

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.