Avu - A short backstory !

Avnit was born on 19th June’17, as a younger of 2 boys (non-identical twins). We call him Avu, as it is a single syllable, and he responds better if we reduce complex commands. When he was born, he did cry, but needed to be in NICU for 2 days, due to respiratory distress. He was discharged2 days later. Thanks to having twins, at4 months, we figured some of his behavior was not like his brother. Things like not sleeping enough, or staring at one point in the room, or not making tracking individuals, were very typical for him We moved to Bangalore when the boys were 5 months old. We got advice from doctors and therapists in Gurgaon that Bangalore has more mature specialists in the field of development delays. In Bangalore, he was diagnosed with GDD (Global Developmental Delay), although nobody put it down on paper.

By the time he was 5 years, by the time Covid was done, he showed high signs of biting (Aggressive behaviour) if he did not like something and could not be understood by those around. He also was high on stimming (banging on hard surfaces, spinning, repeating same words). He is verbal (limited to a few words from rhymes) but is non-communicative. Oh yes, Rhymes… we did not do right for him as parents - But that was because we were juggling between 3 therapies (I am not justifying our actions, just stating the facts). Morning would be PT, followed by OT… in different parts of the city. Which means he had to wake up early, get ready and eat his breakfast quickly. He then came back home, has about an hour to eat lunch and then drive for his swimming coaching (A specialist who works with special needs kids). By the time we were back it was 6pm… time for dinner and sleep owing to exhaustion. The routine was same for 6 days a week. Not to forget, Avu would never sleep continuously through the night, he would sleep for a few hours, then be awake for a few and then go back to sleep for a couple – all this while being able to manage therapies the next day. To manage this schedule, we introduced him to rhymes via a tablet. And he has been glued to watching ABC’s since then, although he does see / listen to rhymes as well. Till date, he loves watching ABC on repeat, especially while eating. He has learnt new words, and it helped him say words. He even started to read alphabets on signboards and say it aloud. Perhaps it was this that encouraged us to further give him the tablet. Getting him out of it, is going to be a nightmare… but eventually we must find him something mainstream.

For the last one year, he has not gone for any therapy. Either we never found the right therapist OR the schedules never matched. Or it was me(father) who was not convinced about the interventions thus far.

His physical goals were mostly met. His current physical abilities –

• He can eat by his own, he does need help breaking bread / roti
• He does not chew, never. And needs help breaking food into smaller pieces for him to consume it and help with digestion
• He still has issues with fine motor skills, but tries to use his fingers like a pincer\
• He cannot run properly, because of his left foot mostly. He is showing signs of “metatarsus adductus”. We need some specialist physical help to address this as it is impacting his gait.

 Apart from this…

• He is non-communicative, but verbal (Very limited vocabulary)
• Expresses needs by directing us to his need (Example – getting his empty water bottle to us asking for a refill).
• He understands a few words – Sit, stand, pick-up, keep it, Eat, bring shoes, milk, and a few more.
• He loves the wind on his face – bike rides.
• He is yet to achieve full bladder control – incontinence largely exists.
• He shows extreme distress to getting his hair cut or nails trimmed.
• He loves spinning a chewy (Oral Sensory tool) tied to a thin rope – it centres him in some way and has reduced his stimming via more aggressive methods.
• Loves Jumping on the trampoline

Way-ahead: Interventions we think that could help him (although a specialist’s opinion would be better aligned to his need), in no order and not limited to these. Only a specialist can ascertain the possibilities.

• Independence: A more integrated special needs intervention which can help in a collaborative effort towards him gaining independence – eat well, chew food, take a bath, wear clothes, ask for things to strangers (improved communication, even if it continuous to be non-verbal)
• Communication: Can he find ways to communicate in a holistic manner that can help gain independence.
• An inclusive school environment: Schools that can help him integrate for basic education.
• Abilities Assessment: Physical, cognitive, behavioural, etc. Where does he stand today, and how can we create a roadmap to work on the gaps, and who would help in working on the gap.

We are getting older and weaker, whilst he is getting bigger and stronger. As parents, we are really not sure of the next steps, and are seeking all sorts of input to ensure we are not losing time to offer him independence.

This is a call for help, guidance, and support to make life a little more meaningful for Avu.