This article is part of our ongoing ‘Life On The Spectrum’ series.
Last week, I wrote about our journey of identifying our son’s battles. Now, we had to get to the next step. Slowly, but surely, we began identifying ourselves with the ‘special needs parents’ tag. But that identification itself didn’t come easy.
I remember clearly the first time my husband used it and he was choking – a lump in his throat refused to clear up. Yes, we knew it, we understood it, and we were okay with it. But, it truly, fully dawned on him only when he verbalized it for the first time. We were at a hospital, waiting for our turn with the pediatric neurologist for an understanding of the assessment we need to do. We had a pre-booked appointment and we were going next. In the meanwhile, Hasan was getting a little restless in the waiting room. As I held Hasan and tried to take him to a play zone nearby, I just told my husband that he should let the receptionist know that we had a prior appointment and would like to go next.
I asked him to call out the fact that our son is a special needs child and is getting restless. My husband gave me a look I will never forget – that of realization and helplessness at the same time… he buckled up and said it… said it for the first time:
“Ma’am, we are next in line, my son is a special needs child and is getting a little restless.”
I stood by and watched him sink the fact in and digest it. There is a first time for everything but this one was tough for both of us. Calling out, disclosing in public – it started off as a whisper but now we say it like it is just another beautiful role we get to play.
Speaking of the doctor’s appointment – yes, we all go to a doctor, we get a prescription, we get treated – that cycle is a familiar one!
Here is a new cycle – we have symptoms, we get to know there is a “problem”, we get to know there is a range of disorders one can fall into, we get to know that there is a “broad level” name to this category of disorders …
We will never know the cause. There is NO medicine. It is a lifetime journey. One may NEVER be “cured”!
Imagine – a pint-sized happy dumpling in the car next to you, careless and free, playing with his little elephant toy and the conversation you just had with the pediatric neurologist indicates no identification of the cause, no specific diagnosis and worst of all no medicine that can ”CURE” what we have got!
All my life – I walked into a Doctor’s room and walked out with a prescription… a prescription that led me to a pharmacy – this was the first time, we walked in and walked out of multiple places, multiple hospitals – the only thing we heard was – “here is a list of assessments you can do, none of which may still help you identify what exactly he is going through”
That’s why it’s called a spectrum – a band of colors, as seen in a rainbow – only; we wished that this rainbow has a pot of gold at the end of it!
We started understanding this better and better with every visit. Each professional had the best intention to help us, guide us but there is only that much that is KNOWN about AUTISM today.
Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior. (Source: National Institute of Mental Health)
There were 2 main paths each parent could cling on to, one being diagnosis and the other being “T H E R A P Y”.
At first, Aseem and I thought we should do both, we took the typical “Leave no stone unturned path”. We ran with Hasan from pillar to post, hospital to hospital, therapist to therapist.
We had something happening every single day; we had a range of papers in a file named “Master Hasan Ahmed”. Many files, many doctors – but NO prescription!
Many directions we needed to look at, this child was potentially going through a case of hypotonia and sensory processing disorder with autism. We were not sure if autism was syndromic or non-syndromic in this case.
The good thing we started doing was, we realized that the child is in the most receptive phase for therapy before the age of 7. We thought we must make the best use of the next 2 to 3 years to make a difference in Hasan’s life. We kept our battle of diagnosis ON but we did not delay on THERAPY.
Like I said in my previous article, we met so many therapists and finally landed with some of the best therapists who are a big part of our lives today.
My submission in this article to every special needs parent is – do all that you want to, to clear the’diagnosis-related’ cobwebs in your head. It is not anyone’s fault but ASD has more unknowns than knowns today. The diagnosis could go on and on and on in multiple layers. But, please do not wait to start therapy on the spectrum after diagnosis. Therapy time is golden and there is no better time to start therapy than NOW.
The writing was on the wall but we opened our eyes to it recently. THERAPY, THERAPY, THERAPY!
More is less when it comes to therapy in ASD as my husband says.
We moved from waiting list to waiting list even with THERAPY, we realized that one needs to clock at least 40 hours of therapy per week based on available research, in order to have a positive impact. Great therapists had a long waiting list – we waited but we made it!
As we enrolled Hasan into consistent occupational therapy, speech therapy, and ABA (applied behavior analysis) therapy – he started showing tremendous improvement with various goals we were working towards.
But, hey – we weren’t doing 40 hours per week! What do we do now – the next episode started – we were now wondering about how to keep up with therapy time.
Again, good things happen when we express our thoughts. I started blogging about Hasan and BAAAM! – a friend pinged me about her journey with her autistic son. She gave me a paradigm shift with one single thought that ended my search for 40-hours a week:
YOU are the therapist – she said!
That was a penny dropping moment for my husband and me. We got our answers with that paradigm-shifting thought.
Hasan is blessed with phenomenal therapists and they were open to doing early intervention programs and home programs for us. Hasan started getting therapy time at home and school, Hasan started feeling that we understood him better as parents, Hasan started feeling AT HOME!
The last few months have been particularly rewarding for us as parents because we converted our home to make therapy easy, we started clocking 2-hours a day as therapists at home, we started collaborating with therapists on goals. Life changed!
Today – we don’t know why Hasan is autistic, we don’t know if he has multiple other disorders that come with autism, we don’t know their scientific names, we don’t know of any medicine that can cure him!
We know that he is getting ready for LIFE; we know that he will soon handle his activities of daily life (ADL), we know that he feels UNDERSTOOD!
Diagnosis is very important but therapy cannot wait for the diagnosis. Let’s not put the cart before the horse and expect it to move!
This article is part of our ongoing ‘Life On The Spectrum’ series. You can find the previous article here.
Ishwarya Kumar Ahmed is the c0-founder and director of Upturn Learning Solutions- A community organization in the space of parenting and childhood. She prides herself on being the mother of a special needs child and a neurotypical child.