Baby J’s first!!!

Look at this picture... it narrates a thousand stories. It speaks about the journey this autism family has covered in the last one year. Avani’s smile and Jay’s comfort around her tells you how this little angel’s arrival has made a difference in our lives. 

Jay is one today and I can’t thank God enough for sending him to us. We needed him, almost desperately. 

I needed him to see another side of my maternal instincts. A mother who is not always struggling to be heard, a mother who is not always counting milestones, a mother who is not always looking at her child through a certain diagnosis. 

Aiyappa needed him. He knows Jay is a reflection of him in character not looks 😋

And Avani needed her baby brother to learn and unlearn so many things! She has to share her parents, her toys, her space and even her privacy (this boy goes to the toilet exactly at the time when she is there)! The bond has only started to develop. The layers of a relationship are only getting built one by one. Right now, he’s perhaps just a little toy for her to play with occasionally. Sometimes he’s fun but mostly annoying. 

But this little bundle of naughtiness is here and it’s amazing how quickly he’s become our lifeline. 

And by the way, I still sometimes press his nose to check for a nasal bone :)

Jay

I was particularly anxious on the night of 22nd November. Baby 2’s due date was still a  good three weeks away but my mind was not at peace. I checked out all of Avani’s Baby pics, consoled myself that I’ve already given birth to a beautiful baby and I should not be worried about anything! I slept pretty late and woke up to send Avani to school. Just as I was resting at about 8 in morning, my water broke! I made a hurried call to the husband who had gone to drop Avani and as soon as he was back, we left for hospital. After monitoring the baby’s vitals and checking my progress, they decided to wait for another 24 hours before scheduling a C-Sec. 23rd November went by in constant anticipation of what lies ahead. When they tie the baby monitor machine on you, they also ask you to count the kicks. At one point, the monitor went blank, husband and I jumped out of our seats only to realise that the machine had moved from its place! Phew!!! 

On the morning of 24th November, am being prepared for the operation. The filling of consent forms, checking of vitals, changing of dress, the questions, the gynaecologists, the nurses, the anaesthetist… it was so overwhelming! I just wanted everything to get over as quickly as possible but it would drag on… at least it felt like that. 

At precisely half past eight, my doctor walks in the OT, am semi conscious now, husband is sitting by my side looking like a ward boy, behaving like a doctor but actually all nerves!

At 8:53 AM, she says, “congratulations! Its a boy!” And I immediately turn towards my right, where the pead is cleaning him, I swear, the first thing I told myself, “he has a nose”…

Doctors got busy to stitch me up, husband got busy conveying the news and I slept. When I woke up, my lower half was still under the influence of anaesthesia. I asked for husband and when he came, the look of ‘all is well’ was good enough. The baby was ready to come to the room even before I was. 

It’s been three months now, touchwood all is well. I am a paranoid mother and like an idiot keep looking for signs if something is amiss. But Baby 2 is handling himself well :)

The focus needs to shift back on Avani. Poor kid has had a tremendous year too! From adapting to a new house to sharing her parents with a newborn to leaving her school and classmates of three years!!! It’s been a tough one for Avani. Am going to ask you all to remember her specially in your prayers once again. She is fascinated by baby 2 as much as we are. His arrival on the same day as my father’s 33rd death anniversary is truly a blessing. We’ve named him Jay - it also means blessing :)

Let it be...

Somewhere between the most emotionally and mentally exhausting 19th to 28th week... I realised my Heamoglobin levels are dipping. This was because I was not able to take oral iron supplements which are mandatory during pregnancy as the body is supplying essentials to the lil one inside you. One iron tablet could trigger diahorrea for two weeks at a stretch and therefore, I had to give up taking them. 

By now, I was consulting a senior Gynae in Apollo as well as the local Gynae near home who had handled my case since beginning. On the suggestion of the senior one I decided to get an iron supplement drip infusion done in the junior Gynae’s hospital. 

As soon as they tested the drip on me, I fainted and woke up only to realise that I’ve vommitted on myself. 

They discharged me after making a few calls to the junior gynae and of course the HB levels kept dipping. The next time I went for a check up, the doctor decided to literally show me the way out!!! Yup, she says she cannot carry on with my case any further if I am going to follow the advise of another doctor! 

In between the missing nasal bone and other health issues with the mother and child, this doctor decides to pamper her ego.

And I tell myself, “bus yahi dekhna baaki tha"!!! 

Back to the scan on Saturday after a terrible Friday night when I googled all things that could be associated with a ‘quite’ right arm. 

So this is happening soon after I’ve had my breakfast and as soon as the doctor puts ultrasound toggle on my tummy, she says, ‘baby looks pretty active today!’ That’s good to know! She starts looking for the right hand and the position is changed today... Thank God No.1

She shakes my tummy a bit and we see that little wrist moving a bit... Thank God No. 2

The fingers move a bit too... opening and closing the palm... Thank God No.3

Doctor tells us that the baby is lifting the arm too... Thank God No.4!!!

So finally, the fetal medicine expert is confident that she has seen enough movements in the right arm to write my report. Thank God No.5.

We leave the hospital with just the worry concerning my baby’s missing nasal bone. 

Baby and I seem to be doing fine as of now. Iron supplements are finally suiting me and am maintaining a borderline level. I feel baby’s kicks and movements and if you ignore the anxiety about his/her nose, am mentally at peace. 

These blog posts are just my way of getting the negative thoughts, anxiety and fear out of my system. You may call me courageous for writing all this or an attention seeker...but my experience on writing about Avani is a testimony to the power of positive vibrations that your loved ones send in the universe while praying for you. I want to capitalise on that and am riding on your prayers and wishes through this challenging phase in life. 

But I realise I have given plenty of people panic attacks over the last few weeks... so no more posts for now... Next update only after the baby is here! :)

One worry less, but two more added...

I dream, I've just delivered baby no. 2 and my first question to the doctor - How does the baby's nose look!?! Tell me the gender later, but first the nose please!

And am sure, this is exactly how it’s going to be. 

The reports of my amniocentesis and Microarray came back absolutely ‘normal’. So chromosomal abnormalities are ruled out. Thank God! We are told to relax and proceed further with no stress. Come back for a growth scan at 28 weeks now. Which we duly take appointment for. So its a Friday afternoon, and the doctor starts the scan. We are anxious about the Nasal Bone and it’s still NOT seen. Ok... now the doctor is almost mumbling to herself “what’s with the right hand”... “that’s quite an awkward position”... She shakes my tummy and the hand stays the same way. She abruptly tells me to take a walk and come back after eating something sweet.

Husband and I are sitting in a cafe in hospital. Over a cup of coffee and a big chocolate pastry, am telling him, I think the doctor suspects something in the right arm too. He diverts my attention to coffee and we are back for a repeat scan. 

Yet again, the right hand is in same position as about half an hour back and nothing seems to help in tracking any movement in it. 

By now we are sure that something is amiss. The doctor insists on a third try and now am told to have some juice, take a long walk, go to the loo... basically do something to shake the baby and help him/her change the position. Half an hour later... we still have the same challenge. Absent nasal bone combined with no movement in the right arm. The doctor, I think is more nervous than me at this point and refuses to give me the scan report. We decide on another try the next morning and its heavily raining as we step out of hospital. I think that heavy grey sky and our struggle to get to metro to reach home helped us ignore our fears till its bed time. 

That Friday night will go down as another horrible/uncertain night in this pregnancy. 

The curious case of an Absent Nasal Bone

Its not for the first time that the thought of having another baby struck me. I remember telling my mom soon after Avani that I would want two kids back to back and then get on with career. But what we plan doesn't stand a chance unless its approved by the One above all of us. 

Avani's diagnosis at around two years of age changed our world completely. In the last seven years, I conceived twice before and after much deliberations and heart break decided to terminate both the times in less than six weeks. Its tough on everyone. 

So when you realise that you have a third opportunity, you feel that this could very well be the last! I wanted to grab it before its too late and I really thought that I am indeed destined to have another baby. 

But by the time we hit the 19th week mark, the thought of terminating pregnancy has crossed my mind once again.

Once in car, I break down. The radiologist told us that absent nasal bone is considered a soft marker for Down Syndrome, also known as Trisomy 21. The child born with this condition could suffer with a wide a range of cognitive and physical limitations.

Are we 'strong' enough to have another child with special needs? I have a long list of friends and relatives who in a very well meaning way call me a 'strong' person, a 'brave' mother! God chooses people like me to throw such challenges... So let me just confess once and for all, I am not 'strong'. Please God, now spare me your 'challenges'. 

Before we reach my Gynae for further planning, I google everything about medical issues concerning an absent nasal bone. There were no other anomalies in the scan, and we are advised to see an expert in Apollo's Fetal Medicine Department. 

It was a horrible night. I cry and curse every tissue of my body for being incapable of producing a healthy child. 'Why me'??? Rather 'why me' again!?!

Doctor hears me out patiently. She knows my first child is on Autism Spectrum, she knows am a nervous wreck at that moment and she knows that this is the closest I would ever be to have another shot at maternity. We also meet a Geneticist in the same department. 

We are advised amniocentesis which basically means drawing out amniotic fluid from placenta and testing it to confirm if the baby has any chromosomal issues. The results will either rule out or confirm Trisomy 21, Trisomy 18 and Trisomy 13 abnormalities a hundred percent. The geneticist suggests another test called Microarray using the same sample. Chromosomal Microarray (CMA) will be done for genetic testing in a range of 7,50,000 combinations to look out for any unexplained developmental delay/intellectual disability or any other anomaly in my unborn child.  

Both reports would take approximately three weeks to come and the wait is agonising. By the time reports are out, I would be 22 weeks plus and legally cannot terminate pregnancy. So no matter what, this baby is coming. 

Note: I am not writing this blog in real time. Am currently 32 weeks pregnant and these tests, there follow ups, second/third opinion have been sought. This blog is an attempt to fight my fears/concerns and uncertainties through positive vibrations from friends and family. Its been a tough journey and challenges have been many, will keep you all posted on how it goes. Due date is 11th December - another coincident, as Avani was born on 11th December too :)

Breaking News!!!

Recently Facebook threw up a memory from October 2010. Am seven months pregnant with Avani and commentating for the sport of Wrestling during CWG 2010. Such a career high that was and anyone who would meet a pregnant commentator in a noisy stadium would have their own comments! Your baby will either be a commentator himself/herself or a wrestler!! And I was like - why not!!!

We know my baby's journey in these seven years and the breaking news is that am pregnant again! Yup! Its time to welcome baby no 2! And coincidentally, even in this pregnancy I worked as commentator for another international wrestling tournament! Haha.. that was in month 5! 

But coincidents don't end there for us. Call it destiny/luck/karma or whatever, it seems am

chosen by the almighty to stay in perpetual stress concerning my children. 

When Aiyappa and I 'discovered' earlier this year that I've conceived, for at least 12 weeks we were not sure if we're going ahead with the baby or... 

Then the mother in me got greedy. I wanted another chance at 'producing' a healthy offspring. I wanted a sibling for Avani. I wanted someone to talk to any time of the day. Someone who can annoy me with his/her questions and share all emotions. 

So we go ahead. Starting Month 2, there's massive evening sickness. All I do post 3 PM from month 2-5 is eat and puke!!! Weight  gain is bare minimum... no one can guess that am expecting. 

Week 18 onwards, things start easing out a bit. I tell myself,  this is the time to start enjoying. Just a bit anxious about the impending 19th week anomaly scan but relaxed overall.  We reach this radiologist for the scan promptly when its time. Its going fine... fetal heart, kidneys, liver, stomach, brain, arms, legs everything seems to be on the mark. We are happy and just as we are thanking our stars, the doctor decides to drop a bomb! 

We are told, that baby's nasal bone is absent. What does that mean? Well, its considered a soft marker for chromosomal abnormalities... With fucked up mind and heart, we get out... Aiyappa decides to buy some 'namkeen' and I want to have a samosa to fight tears. We eat, we leave and just when we reach parking, I get a call from doctors clinic... we're praying that he's called us back to say that there's been a mistake and everything is fine with our baby... please please please.

Well, there has been a mistake and its concerning the report... but the problem is that he forgot to mention 'absent nasal bone' in the written sonography report. His assistant duly added that and said thanks for coming back. 

To be continued...

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.

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.

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

Getting the right mix

After reading my last blog, where I perceived our journey through autism as a marathon, a friend wrote a comment. She says, "I feel it's not a marathon or a sprint... Its a walk you take with your child everyday, watching them grow, struggle and in pain....and each passing day you will realize the importance of life, small things ...a smile, a laugh, a gesture, a simple beautiful childhood, which we usually ignore in a normal life." I must admit, this is a better point of view. It is very appropriate to call it a walk. 

Avani and I are indeed walking together. In fact, our entire family is taking this walk with us. Those small-small milestones that parents of typical kids take for granted mean so much for a child on the spectrum. I remember the joy we felt when Avani started imitating actions and sounds last year. Our excitement knew no bounds. I could just go on and on hear her repeat mama, papa, nona, nani, dada, dadi after me!!! Even going on to enjoy her repeat silly sounds like 'kee-koo', 'pee-po' blah blah!!!

While we do spend a lot of time cribbing and crying over what we don't have, appreciation for what we do takes a back seat. I get to meet mothers of children with special needs almost on a daily basis. In one of our conversations, a mother of an autistic child said, "isse to acha isse CP(Cerebral Palsy) hota, at least we wouldn't have to worry about cognitive development and hyperactivity." Imagine the plight of a mother who is asking for one disability to replace another. As a parent on the spectrum, the first lesson that one learns is not to judge any parent. We do encounter innumerable difficulties in dealing with our children on a daily basis. May be her child gave her a hard time that day. But my assurance to her was only to be thankful to God for small mercies. Look at the fact that your child has no physical disability. If we work hard on our autistic children, it will be much easier for them to mix up in a crowd of typical children. Don't know how much it worked on her but at least I tried.

Amongst the steps we have taken with Avani so far, I am satisfied on various levels. I know she will do well ahead too. My only fear is that I may end up taking a wrong step in my over involvement in her sometimes. Our homeopath sort of bluntly told me yesterday that I am a 'control freak', he advised that I take a dispassionate view of my child's condition. Yappy complemented his view quite well. He says that if we zoom in on a subject too closely, the picture becomes hazy, zoom out a little and you can have a perfect frame with a perfect picture. 

It holds true for us. There are so many different therapies, medicines and strategies explored all over the world to help children on the spectrum. It is impossible to explore everything for your child. The best solution sometimes lies in the simplest of action. If  a particular program is working well for a child, then there is no need to disturb it. But that doesn't mean that you shut your eyes to anything. You can always learn about new developments and apply some if you get stuck at a certain level. 

I know of so many parents who flatly refuse to get some basic allergy tests done on their children because they fear that if the child turns out allergic to some basic food items, they may have to alter their life style forever! But this is sort of cheating the child and denying him/her a healthy life. We got a complete allergy test done on Avani recently. She turned out allergic to Milk and all dairy products, almonds and even onions!

Unknowingly, we were feeding her things which her system was allergic to. Following a diet without milk, onions and gluten is just going to be a small sacrifice for a larger benefit. That's why it is better to be aware and be prepared than be sorry later. And who knows, may be this small action of diet control can lead me to unravel the hyperactive behavior mystery of my child!

Avani on her first birthday!

It's a marathon not a sprint...

When you finally come to accept that autism has hit your family, the first thing you wanna do is dig out the reason. You are constantly bothered by the 'why me' question. Was there anything wrong in the way I carried my baby during pregnancy? Did I eat anything wrong? Did I unknowingly expose her to harmful chemicals or rays? Is it my genes? My husband's genes?

The sad part is that there is no clear/100 per cent/convincing answer to it. A condition (autism) that has turned your world upside down is so cruel that it doesn't even tell you why you are the 'chosen one'?

This question doesn't leave your head even when you start with therapies. But you need to start and start early. When we met Dr. Amit Sen (Child and Adolescent Psychiatrist), we were sort of calmed down by him. He came across as a very learned, easy going doctor, who knows exactly what he is doing and what is he talking about. After an hour long session with him, we were guided to a few therapists and were asked  more questions about Avani to determine all the issues at hand.

It turned out that Avani has some sensory issues too (more on that later). This means that she has to be started on a sensory integration therapy which will be a part of Occupational Therapy, speech therapy and special education will constitute her Early Intervention Program (EIP). Now consider this - You know there is a problem with your child, you have been educated about the best possible 'cure', but you still can't start! Why? Because each therapy center has a long waiting list of children who need help!!!

So we waited and bugged therapists with our request to enroll Avu for a few weeks, before we finally got a call to join EIP at Milestones in Kalkaji. It started with 45 minute sessions of OT thrice a week. Avu would be placed on a baby seat in the car while I drive her to the center. So the first task at hand was to get her to sit on her seat and wear the belt! Not so easy as it sounds. I have driven to Kalkaji in maddening traffic trying to bear Avu's kicks and screams on one hand and maneuvering the car safely at the same time. Her tantrums wouldn't just end at that. For the first six months at least, Avu just couldn't adjust to the therapy schedule. At least twice in a week, she would cry out loud for the entire 45 minutes of a session. Not willing to obey, not willing to sit in one place, not willing to part with a toy, not willing to sit on a swing, not willing to do a certain exercise. Her screams would reach the waiting area for parents loud and clear. People would generally discuss, who's child is it and my hand would go up immediately to cover up for the embarrassment.

When you start going for therapies, you see positive changes in your child on a daily basis. You start believing that its just a matter of time that your child will be back to 'normal' and this gruel will be over. But then you meet parents who are coming to the center for several years and are still waiting. You see children at various points on the spectrum. Some are not even verbal, some have physical difficulties, a lot of them have a lot of issues from as small as bad hand writing to as big as no understanding.

You need to quickly accept that this race is not going to be a sprint it is a marathon indeed. But by this analogy, there has to be a finishing line! And am running...

Entering the world of Autism

Sometimes I wonder what is MY mark in bringing up my child. For about two years now, I am just going by what therapists or doctors  tell me to do. How to talk to my child? How to modify a certain behaviour? When to ignore her? What to feed her? Which school to put her in? None of these decisions are MINE! When Avani grows up, will there be anything in her character that resembles her mother's personality? Am not sure.

Autism is a complex neurological disorder. While some children are born autistic, it can affect others any time from birth to about three years of age. It is also a spectrum disorder, which means that it affects every child differently. While some autistic children are highly functional with very few affected areas, some others may be severely affected with physical disabilities too. That's why it is believed that if you have seen one autistic child then you have seen only one. Based on the diagnosis and progress of one child, you can't predict how the other would respond.

Between 15 months to two years of age is when all sings of autism in Avani came roaring at us. We were watching her very closely, spending more time talking with her, giving her less time alone and monitoring all the habits. And of course Googling.

Some of my first few searches were "17 month old not talking"..."Toddler not responding to name"..."Milestones from birth to 17 months"...all of these searches would lead me to autism one way or the other.

In a general autism red flags check list, we were overwhelmed with the number of ticks our child got!

1. W-sitting - yes
2. Walking on toes - yes
3. Bad eye-contact - yes
4. No speech - yes
5. No interest in peer group - yes
6. Fixations like rocking, spinning - yes
7. Lining of toys - yes
8. Doesn't acknowledge parents presence or absence -yes
9. Excessive tolerance to pain- yes
10. And of course Hyperactive - yes yes yes

How could I miss all of this?

On Dr. Jyoti Bhatia's recommendation, we also took a hearing test when Avu was 17 months. I remember each and every moment of that day. Before going for the test Yappy and I were secretly hoping that Avu fails it. May be she is 'just' hard of hearing that's why not responding to name and commands, may be there's just some wax accumulation in the ear drum and it can be sorted soon. These would have been relatively 'smaller' issues to deal with.

Seeing all those electrodes pasted on our toddlers skull for about an hour was one of the many heart breaking moments ahead. Within a couple of hours the test report was out. Avu has NO hearing issues. She can hear every sound at every frequency. Her brain responded to it.

Right...so there is no hardware issue, there's a software issue here. She can hear everything but still not responding to most of it. Why? Because her nerves are not sending the right signals to her brain to extract a response. 

We were recommended speech therapy for her. We were back home with more questions than answers once again. I started talking to a lot of people.Colleagues, friends, pediatricians. I spoke to a very senior development pediatrician. She is not practicing anymore and I have forgotten her name unfortunately. Her advise was simple - TRUST YOUR INSTINCT.

She said, a mother's instinct never goes wrong. If you think there's something wrong with your child, then do something about it. Don't listen to anyone else, just listen to your instinct.

I started taking Avani for speech therapy at ASHA Speech Centre in a few months. I had given advance fee for ten sessions but I withdrew her after four sessions only.

For the entire one-hour session, my child would just cry non-stop. The therapists' approach was to get the words out of Avani's mouth by luring her to a toy or candy or anything that she likes. But it was just not working. Those four sessions were perhaps the most torturous four hours of my motherhood so far.

I decided that even if Avani needs help, this is not the place or therapist where it's coming from.

A friend forwarded us the link of a homeopath in Chandigarh who claims to treat Autism. We went to meet him and started with his medicines ASAP. But by this time we were aware that only homeopathy is not going to help. We needed therapies and we needed to meet the right people.

I spoke to a former colleague who's daughter was also on spectrum as a toddler. His guidance I cherish dearly and without his help perhaps, I would have struggled a lot more and wasted more time.

He told us to meet Dr. Amit Sen of Children's First and get Avani's correct diagnosis. That was summer of 2013 and there is no looking back since then.