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Why A Special Needs Success Story Is Never A Single Person’s Story


This article is part of our ‘Life On The Spectrum‘ series. You can check out our previous articles here and here

 

I am just a mom who misses deadlines, who chooses to crawl into bed with her kids and miss some calls. Just a mom who has a lot of unread messages, a lot of read messages that need a response… sounds like a wreck right? 

Honestly, it sounds like a wreck from the outside but the inside feels like I just got my priorities right… I chose a kiss over a call, a hug over a mail, a cuddle over a struggle! Back now in action… a break like this rejuvenates me and brings me back! 

So what are we talking about today? 

I realized that I do things for selfish reasons and THEY do it for selfless reasons… who are THEY? And what am I talking about? 

As a special needs parent, I see myself doing things for Hasan but clearly I have a selfish goal behind it all isn’t it? I want MY son to become independent, I want MY son to flourish, I want MY son to prosper.  Who are these other people who do the same thing for my son and probably even more but with utmost selflessness? – THERAPISTS! 

This article is all about therapists and a day in their life. Scroll down as I unfold some nitty-gritty of this noble profession! 

Profession – Yes, it is a profession – they do earn to help Hasan – How does that make it selfless?… you may ask! Each therapist we go to today is like a gem we got after searching so much. Each therapist we go to today has a dozen professions around them they could have chosen which has far more comfortable routines and less effort. Each therapist we go to today has a life that is filled with repetition….. They don’t get pep talks, fancy performance appraisal cycles, HR teams that engage them and motivate them – they are their own pep-talk; they are their own motivation, management system! 

I have been inspired by each therapist in Hasan’s life and this profession gives me hope that there is so much good happening in the world every single day! 

I am going to introduce you to a bunch of people today – this is not a review for any therapist or school – this is just a heartfelt profile I gathered during my interactions with them! 

If you are a special needs parent – this article will help you feel hope, happiness and a deep sense of faith – that your child WILL get the support he/ she needs 

If you are not a special needs parent and just a reader on this blog – this article will open your eyes to a very sincere profession that hasn’t gathered enough attention or awareness yet! 

Read on…. 

Meet Neha  

We opened our eyes to autism at her doorstep.. . We walked in as confused parents who had many doubts … some questions… no answers! 

Her first look at Hasan was accurate, clear and objective. She was able to break the truth down for us as parents without putting a dent on our hope. Hasan felt comfortable in the first go and she has become a landmark in his memory as a child! 

Occupational therapy with sensory integration is easy to search on google but hard to find as a practice. Hasan went to Neha as a wobbly child who couldn’t have a grip and sit on a swing. His palm would be red in just a few minutes of swinging because his muscle tone was that low. Today, Hasan is no more a wobbly, jelly-like pie, he is strong enough to go through a 10-round obstacle course, smart enough to put a potato man together, determined enough to push himself on the scooter-board and get this goal achieved! We have a long way to go and many more goals to achieve but with a therapist like Neha – we have our bags packed with confidence and hope! Neha says bye to one child and hi to the next child in the same breath (literally), she lives her life in 45-minute windows, she is a queen of swings and weaves magic with children who are autistic, she has seen me cry, complain, laugh and  joke – a therapist who turned into a friend for me! 

 

Meet Deepa

 

Hasan walks into school asking for Deepa ma’am every day. For those of you who know Hasan or any autistic child, you know what a big deal it is! ABA therapy – not everyone knows what it is, some know little about it, some know a lot about it. My family believes BIG on ABA and Deepa is one of the biggest reasons. Deepa wears multiple hats as Hasan’s therapist. Her job is such that she couldn’t be doing this day in and day out unless she felt truly compassionate. As an ABA therapist, she helps Hasan take up goals and breaks them down into mini goals and goes after it with blinkers on. She stays focussed on goals no matter what and helps Hasan master each goal with repetition. The amount of repetition she goes through is just not easy; her ability to look at Hasan and her profession with a mix of objectivity and selflessness is remarkable. ABA therapists become play buddies when they have to, they give commands when they need to, and they strengthen their hearts and keep a straight face even with the most stubborn, aggressive child in front of them.  ABA therapy has helped Hasan initiate his journey towards integration. Today, if Hasan uses the bathroom like any one of us – it is because of the relentless work Deepa put in. He does Montessori table work, fixes puzzles, sorts and labels objects and so much more…Deepa lives her life the ABA way- tickers, stop watches, data sheets and trends. Hasan will remember all of this I am sure and show his gratitude someday!  

 

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Meet Joel

 

I have not seen too many men in the field of therapy. It is rare to see a young man like Joel focussing on a child with instincts and gut feels that a parent has. Joel had an instant connection with Hasan. The duo pleasantly surprised us as parents. Joel walks Hasan into a path full of cobwebs and helps Hasan face it bravely and clear webs one by one. Activities of Daily Life (ADL) – If someone told me 3 years ago that a young 23-year-old boy will help Hasan learn how to brush his teeth and comb his hair – I would have responded to that with a “what the hell?” – but it’s true. This young lad spends his time mending daily routines for autistic children like Hasan. He splits each herculean task into minis that are handle-able by the minis. Hasan can now sail through a day with less dependence. He understands routines and tries his best. But for Joel, I would still be doing most of it for Hasan. Joel takes one task at a time and goes after it. Hasan can kiss with a sound, blow whistles, blow candles, blow bubbles, wear his slippers, wear his clothes – a man named Joel did it! 

Meet Divya 

 

Communication and language are two different things they say! I realized how much I took for granted when I met Divya. Divya works with verbal and non-verbal children and helps them communicate how they feel. A big part of autism is one’s inability to understand and be understood. A lot of frustration stems from this very attribute and we as parents have seen Hasan come out of the spiral and avoid meltdowns just purely based on better communication. Divya splits language and communication and works in layers with Hasan. Speech therapy as a stream is very technical and is not as easy as it sounds. One usually thinks that the speech therapist makes children speak – NO! They make children communicate.  Divya is very technical and attacks communication with various modalities and techniques. She works on Hasan’s oral motor skills and enables communication by playing, by questioning, by making Hasan think! Today – Hasan handles “what” questions, “where” questions and sometimes even “who” questions. Hasan knows to express his feelings like anger, hunger, happiness and more. Divya doesn’t have a magic wand but we have experienced the magic!

Last, but not the least – clichéd but true …

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Meet Louise 

A Swedish-Filipino trained in Germany and settled right here in Bangalore – someone who understands autism and the families that struggle with many challenges that come with autism. Louise was referred to us by a dear friend. We walked in, not knowing what to expect. Louise has a therapeutic feel as a person – one feels very calm around her. She has a therapeutic home and overall a very very beautiful approach that worked wonders with us. Systemic Listening Therapy – an approach that uses technology and professional guidance to improve one’s ability to listen, learn and communicate. Louise offers therapy in phases not just for Hasan but for me too as a mom. I feel like ruffled feathers are softened in this process. Hasan and I go to Louise and switch off from the madding crowd. Hasan is in his therapy room with Louise listening to Mozart and Gregorian chants while I have my own headphones plugged in for the same music in a different frequency. No chit chat, no mobile phones, just quiet time, mandala corner and sleep. Louise makes it so comfortable and powerful. She cares to give me my blanket and even put it on for me on the days I forget and just sleep off. Louise understands what parents of special needs children go through, she is by far the only therapist who offers therapy for the family – not just the child. That very thought is truly empathetic. Today, Hasan can see anyone in the eye, he can stay in the same room as loud people, he can process 3 step instructions, and he can tell us how he feels – hats off to Louise who is an absolute professional at this! 

I opened the door and walked each one of you into our lives so that you get to meet these beautiful people. There are many Nehas, Deepas, Joels, Divyas and Louise in this world – they do what they do just to see that milestone achieved – they don’t do it for tangibles. I am convinced that this is a noble profession and people don’t know enough about this! A therapist is not a doctor, not a nurse, not a teacher, not a parent, not a trainer – a therapist is a therapist – I wish we can do a “World Therapist Day” and spread more awareness about such an intricate profession which is surreal and is often misconstrued!

Join Us FREE At India’s Very First Virtual Conference For Special Needs With 30 Experts From All Over The Globe

 

 

 

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