Have been so out of scene. Been neck deep busy in work and head deep busy in struggles. Words have always been therapeutic for me and so I feel the need to finally rest.
Till this morning I have been at it on the comp, on the phone, reading, researching, scanning, assessing, seeking appointments. things are looking up, so I can rest a while.
For anyone who has been part of my Son's life and watched him really closely would know for a fact that he is different. While every child is different but this guy was never the neuro typical child. Up until very recently (mid July to be more precise) this idea never really bothered me, I mean I am a perceptive mother and an equally responsible SEN worker, but no never felt haunted. Till the afternoon when I received a call from A's preschool sharing that he always insists on having the class attendant carry him down the stairs at school and when asked to walk he complains that he will fall. They called to ask if he has ever fallen down the stairs. That was the first true alarm bell.
I acted proactively, I started walking him down the stairs daily at home to give him that exposure to ensure this is not an environmental reason (we live in an apartment and mostly use the lift). I noticed he found looking down as he walked very overwhelming, I also noticed he climbed down reluctantly at first. Finally I noticed his climbing down was way behind age appropriate behavior.
Ever since A got back to school, he got fixated or shall I say fascinated by Fish. He always had one in his hand from the Tara Nemo characters. He always had one at his Nursery as well. He always had one in the car, at home and at Nani's and would never give them up. He knows names of more fish like Archer fish, trigger fish, remoras fish, red mullet, pomfret fish than I would ever know. And these he could identify on a lotto mat of 5 / 5, that is high functioning for his age. He recognizes both the English as well as the Hindi alphabet, he has a very good vocabulary of words and pictures much ahead of his class. He knows numbers both in Hindi and English upto 70 and knows songs complete with accurate lyrics. He can picture read 7 books from the Lady Bird series and can tell one from another despite the similar looking title page. This and more ... the cognitive ability is excellent - which unfortunately was the second signal.
Mrs A and A of Tara also mentioned off and on about how he has changed since the surgery. His class teacher (after much coaxing) said he likes to be on his own, does not make friends. The third signal
He got hooked onto a customary ritual of going to the Park and running towards a specific section where a Turban Sikh old man would sit. To be precise, he got obsessive about 'Sardar ji' uncle whon where ever he spotted, no matter how far, he would run towards totally disregarding me, being completely oblivious to traffic, safety etc. Once with Sardar ji uncle he would get totally possessed by the obsession and would not realize even if I left him and headed homewards. On days when I tried to break this customary ritual by bringing him down earlier than the Turban sikh gentleman came, he insisted on going to Nani's so he could gaze at 'Sardar ji uncle' from there. This was more like a serious signal to me.
Being a household of a teacher, A always has access to a very stimulating environment, painting is a daily activity. I find painting very therapeutic and Art can be a medium of expression for people who find it difficult to communicate their feelings. So this child who other wise always chose purple, green, etc offlate only asked for black. A definite signal to me.
His worksheets came in unattempted with a teacher note "was not in the mood" and most fine motor task based activities reports came with a note "will enjoy with time". A is a very aware child, he does not need time to enjoy. I was told at one time by the teacher that the moment they give him a worksheet he runs away. Again a sign
He is very sensitive to some sounds like the pressure cooker whistle in action, the flute, mixer grinders in action, and off late TV. He goes around switching people's tv sets even if he is a guest in a new place. He demonstrated a strong need for wearing the hat even if he was dripping with sweat and wore the glasses even if it were pitch dark, or at night. He walked tip toed, had sterotypical flappy movements, repetitive language lacking prosody. Alot of echolalia, at three he constructed incomplete two word sentences. Did not like to greet people, even if they greeted him with alot of love and enthusiasm, always greeted stuffed toys and pupppets when I made them greet him. He never allows me to cut either his hair or his nails. He is very fussy about certain tastes and textures in food, making him eat is like a never ending struggle. Mostly he lives on pediasure not because I am not a good cook or a mother who never tried.
I had every reason to expect the worst, and also I am equipped to make that kind of assessment, so I was a tough and focused special educator one minute and a vulnerable and scared mother the other.
Would call up G and cry for hours, would go back in the past and find reasons to be hard on myself about how I may not have done it right, thankfully G was not only supportive but very therapeutic. He was visiting for a week for EId so we decided to plan a visit to Action for Autism once he was here.
And yes the Diagnostic assessment happened over a span of two sittings of 3 hours each. The diagnosis is that he has Autism.
For a moment my world did come crumbling down. I did not cry because I had done alot of that in the last two weeks, grieving is the very first step to healing.
That evening I came home and was particularly silent. I closed my eyes and a whole lot of images came in flashes from as the past.
My Dad wiping his tears and saying "I couldn't do enough for HIM (HIM being my uncle with profound learning difficulties who passed away early)". My choosing to study Special Needs as a therapeutic measure when I lost my dad. My moving to the UK and working with severely Autistic (primarily Aspergers) children who had serious anxiety as well as self esteem issues all manifesting in their anger outbursts. I remembered one time when D attacked me in that state, I ran for protection to the toilet and as he banged at the door angrily, I cried from inside. Once he was restrained and removed my colleague Guissepina came to console me and I said "I don;t know why I am wasting my time here" to which she said "there must be something God wants you to do".
Then back in India I dealt with another episode of rage and anger all owing to a relative struggling with anxiety. People may or may not credit me much but I know to an extent I was a calming effect infact on one occasion when this person would listen to no reason and insisted on leaving the house and the city making both the most important people of her life helpless, she stopped because I intervened and reasoned with her. I need to be honest, even though I have always loved this person like my little sister, this one phase I felt she took her liberties too far and carried a secret sting about what if what happened had not happened because I ended up paying a very heavy price for that.
Back to Delhi, in my job entered AC a child with Autism who I assessed and whose mother I counseled to take him to AFA. Today AC on a very progressive road and will continue to improve.
No event was amiss, it was almost like a jigsaw preparing me to welcome a struggle with open arms and a smile on my face. To compensate for it God gave me the world's bestest child as my son. Very intelligent, very brave and a fast learner.
My baby is a bit in the zone of struggles and may be dealing with his anxiety and stress but he knows mummy is there for him at all times. A from Tara fondly looks at us and says "You two have found each other; like you were made for each other" He is the answer to every single one of my prayer and I am the answer to all his struggles.
I will pave the way for him so he can learn to cope so beautifully that the Autism will cease to matter.
A in his innocent banter often says while eating Puri "Kismet poori hai"
I'll just add to it "abhee bhale zindagee adhoori hai, par Kismet to poori hai"
I conclude for now as it is very late and I have a working day ahead of me with a song in Bolte geet rangarang kaaryakram
"Zindagi kee yehii reet hai, haar ke baad hee jeet hai, thode aasoon hain, thidi hasee, aaj gham hai toh kal hai khushi ...." A ke Daadu kehte hain har raat ke baad subhah kaa aana to tay hai.
