A Cause Worth Fighting For - Our Path through Autism
By Thamanna Choudhury | Published on December 31, 2020 | 12 Minute Read
Aiman, our first born, was born 9 days overdue which seemed quite normal for most women. I opted to have a water birth after the MW advised us there were no further complications since having bleeding till my 2nd trimester.
Once I was settled in the contractions were rapid and frequent however I had difficulty pushing and my baby's heart rate was dropping according to the MW. Eventually what felt like forever Aiman was out and swiftly taken away instead of having a skin-to-skin moment. He was taken to receive emergency oxygen as his heart rate had dropped rapidly. I was told I could see him after 15 mins of being left alone without my baby in my arms.
As I left my maternity room I turned and there he was placed on a weight mat all shrivelled up with thick black hair all over his tiny head.
He was weighed just under 7 lbs and had the most adorable stare. As if to say ‘’what took you so long to come and see me mum?’’ I had to get some second degree stitches done to add to the after birth routine.
Right from the word go, he was such a happy and jovial baby, always with a smile on his face. As he reached 3 months, he was more attentive to sounds and people around him, but not so responsive to his name. He would wake up each morning with a vibrant smile on his tiny face melting our hearts no matter how stressful the night before was.
The ever-lingering thought of returning to work always hovered over me soon after I had him, knowing fully well I'd have to return once he turned 9 months and if we could afford to (bearing in mind we had no savings) I could return after a year. I was consciously capturing every moment and milestone by spending as much time with him as I could. Sometimes it meant going without lunch as he was breast fed on demand, which took quite a toll on me but I’m so glad I opted to breastfeed exclusively. Aiman used to be up for feeds frequently through the night which made me feel like he wasn’t full, or I wasn’t producing enough. I fell into that mum guilt of not knowing how long to feed because he wouldn’t fall asleep. And if he had drifted off, he would still be up again the next hour. The hyperactivity and waking up every hour along with other concerns like not responding to his name started to become more apparent. Health visitors did not pick up anything because he was in his early stages. However fast forwarding to when he turned 2 and after my second child, we decided to register Aiman for nursery as we felt he was ready to socialise and learn with other children. He enjoyed it very much, but at the same time the nursery staff found it very difficult to manage his constant restlessness. He was not able to sit still for activities. Always on the move literally bouncing around all day. We were called in for meetings with the LA Senco who dismissed any learning or developmental delays even though the staff had concerns: from their experience, it was posing in the direction of ADHD/ASD.
I started wondering why my baby was so restless, why wasn’t he sleeping after feeds and what was making him so overactive. Especially during nights when he was able to sit up, he would be babbling and smiling away. This obviously took a toll on myself and my husband who had to wake up early for his work. I was on my own with buba most days struggling to stay awake as he stopped napping after 15 months. As he continued with nursery, I was able to focus on my second child and attend meetings to discuss Airman's behaviour with baby number two on a sling resting comfortably on me whilst I dealt with matters at hand. An educational psychologist was approached through the nursery and was very helpful and supportive in understanding Aiman's needs and ours as a family. He visited us at home and carried out several observations at the nursery, compiling a comprehensive report to accompany his diagnosis later on. Each day, we learned about a condition that may appear to others as ‘disobedient and naughty’ or not fitting in with the norm. We quickly discovered that autism had entered our world, although it was not diagnosed at this stage. We were exposed to a whirlpool of learning, seeing things and certainly thinking outside the box. That it's ok to be different as long as we ride out together and support our child’s needs as well recognising what support network is available for us as a family.
"It's ok to be different as long as we ride out together and support our child’s needs as well recognising what support network is available for us as a family."
Everyday became a new challenge, a struggle to get through the day because his needs were complex rangzng from not understanding when he was hungry to having different sensory issues to not being fully potty trained even at the age of 4 and half years old. The most terrifying part of taking Aiman out was ensuring his safety as he had no sense of danger or understanding. On a few occasions, he ran into fast moving traffic in a blink of an eye. This was all new to us. I always say that I am eternally grateful that our boy is verbal because I cannot imagine how hard it is for those with a non-verbal child to get through each day. I remember his head teacher commented once, that even though Aiman is verbal and communicates well about what he sees on the surface, the conversations were never about him expressing his needs or his feelings. Rather, the topics were about toys, cartoons or anything he is fixated on: “the fact that he talks well goes against him when we are working with him” almost indicating that he is capable of more than he demonstrates. Yes, he talked excessively, but a lot of it was repetition and echolalia. Echolalia was one of the traits in Aiman’s behaviour that attracted a lot of attention as it was a clear trait of someone on the Autism Spectrum Disorder. We decided to go abroad when Aiman turned two to meet his grandparents and explore his roots. Before we went for his 2 years check-up, the HV who booked him for his appointment made an instant observation of how overactive Aiman was compared to other children who were also waiting to be seen. This reinforced the existing reports that had been compiled to document findings on a possible autism diagnosis. This really helped as we were away for nearly 5 months abroad as I took advantage of being on Maternity leave. It was a great opportunity to have a break, meet the in-laws again, and introduce the children to their grandparents. The break was needed but very challenging at the same time as Aiman was experiencing a new environment with unfamiliar faces although everybody was doing so much to accommodate his need, but no one was equipped to deal with it
It was new for them as it was a learning curb for us. A new terrain and lots of over stimulating factors played a part to exasperate his needs causing a lot of meltdowns. But it wasn’t all gloom and doom. He experienced unconditional love and organic village life from chilling out with the cows to making pets with the baby goat. He absolutely loved it and so did we as a family.
Once we had returned we contacted the GP to be sent for a referral of our concerns for Aiman and difficulties he was facing at home and school. We were soon put on the waiting list to be seen by the pediatrician for a diagnosis and further support i.e. SALT for Sensory Processing Issues. When he turned 4 and half, he was diagnosed with Autism Spectrum Disorder based on our findings, nursery, Ed psychologist and other assessments reports. The highlighted areas of concern were a lack of understanding social cues, danger aspects and what emerged later at his school: dyspraxia and sensory needs that have to be regulated daily . Because of his IQ, the EHCP we designed which was quickly approved by the LA, was that Aiman was high functioning although his diagnosis is no longer categorised in this manner. As parents we felt because Aiman was struggling in a mainstream school and till this day he faces many obstacles, he would be better supported in a specialist setting. However because of his EHCP, the LA, and his social worker were involved. They all suggested a mainstream environment with the correct support and tools were available for him through LA funding and that it would be appropriate and soon excel.
What we have learnt from our little man is that fear will always be there unless you tackle it face on. Days and nights are exhausting and daily life is a struggle but we’ve learned to be ambitious, imaginative, and brave. Yes, life is about getting boxes ticked but it's also about supporting and celebrating all the differences that make us imperfect. But as a family we can fit all the missing pieces together. As Aiman grows older, we can see that cheeky intelligent caring and particularly funny little man shining through. Each day won’t be perfect, but with every challenge we will turn another stone and uncover gems that await Aiman.
About the Author
My name is Thamanna Choudhury mummy to two boys Aiman and Sulaiman. I am a working mum trying to get the right balance between work and home life. Giving my undivided attention to my boys and baking often helps to destress myself.