The reality of being a ALN/SEND parent.

Child #1: Early Challenges and Triumphs

I began my journey into parenthood at 26 years old. My perfect boy child #1 was a colicky mess that I loved so dearly and fiercely and… woefully from 11pm until 3am every day for the first 3 months of his life. At 2 weeks old he was diagnosed with Congenital Heart Disease and had his first surgery at 4 weeks old followed by biannual check ups and a follow up op at 7 years old. Despite this he thrived. Met all his milestones early from walking to talking. Until he stopped. Stopped talking, stopped engaging, stopped eating and withdrew into a world of his own. He was not even 2 when he got his autism diagnosis, his younger brother was 4 months old. Fun right? Still wrapping our heads around parenting 2 under 2, we were thrust into a new world where everyday was a new challenge.

Enter here the “support communities”, not very supportive at all… Everyone is against something and half of the time its only because they heard a thing from someone who had seen another thing and very few people had actually experienced “the things” first hand in the present. This is a whole blog on its own.

Well fast forward a little while, I didn't listen to most of what I was told. I rebelliously did my own research into everything that was presented to me by a valued person who steered me right, right from the beginning. I devoured every book she recommended, I turned my ear and leaned in when she gave advice no matter how controversial it may have been at the time and my boy is the better for it. He is no longer non verbal and it turns out he is actually twice exceptional (which is a difficulty all on its own). As his speech developed we learned that he had been consuming the world around him, even when we thought otherwise. At 5, he surprised us with his ability to read fluently. He skipped Grade 1 and started Grade 2 a year early. At the age of 7.5 years we had him assessed and we learned that not only did he also present significantly as combined type ADHD, he was considered gifted. Can you imagine having so much raw power and eagerness to learn only to be shackled and held back by significant impulsivity, difficulty to focus and sustain attention, emotional dysregulation, inflexible rigid thinking and demand avoidance. Couple this with anxiety and fear of failure. Even now at 9 years old, a grade ahead with a reading and spelling age of 12, he struggles and refuses to write a paragraph but will consume a dictionary or an atlas for fun.

Child #2: Discovering Differences

Now I backtrack and introduce my perfect boy child #2. The one I thought was neurotypical… Before I realised that I wasn't. He, much like his brother, did all the things early. At 2 he was such a sweet social and talkative kiddo. He did his best with his brother although growing up with an older brother who isn't really “there” when you are a small is not easy. Boy child #2 started having struggles in nursery school around 3-4 years old. He was often “in trouble” for throwing toys, or I got comments about him being easily bored and a very busy kiddo. Around this time he became very aggressive and easily emotionally dysregulated. We removed him from school and kept him home for a few months before joining his brother where he was. In an inclusive environment where age was just a number. Boy child #2 started school a year early and while the idea was for him to repeat the year if he couldn't cope, he surprised us all by surpassing his older peers. By the end of Grade R, he had been receiving therapy and a different picture had started to emerge. We had him assessed at 6 years and here all the trouble finally made sense. Our small outgoing kiddo met full screening criteria for ADHD, anxiety, flagged for potential dyslexia and was also gifted.

Child #3: Growing with Strength

When boy child #2 was 22 months old, and boy child #1 was almost 3.5 years old, we welcomed our 1st and only girl child. She also did all the things early. She was delightful. She is a very strong willed and deep feeling kiddo. A bit rough around the edges but having to assert herself over the boys has been her mission. She is only 6 now. We won't assess her just yet but there are definitely some tell tale signs for adhd and potentially dyslexia already. It was during the 2 years that followed her birth that I realised that I was most likely an ADHDer. ( I still wonder if there is a chance I actually meet the criteria for Audhd but havent gone down that diagnostic rabbit hole yet.) The more children I had, the worse my executive functioning became and the mask that I wore so well, for all my life without even realising it, started to crack. But I didn't look too much into it, my hands were full.

Child #4: Lessons Learned

When the 3 kids were 6y, 4y and 2y, we had our 4th surprise baby. Perfect boy child #3, much like his siblings, did all the things early or when he was meant to with the exception of a minor speech issue. Between the ages of 1 and 2 I began noticing some familiarities between him and his eldest brother. Sensory seeking, sensory sensitive, toe walking, toy lining up. His eye contact and verbal skill, while slightly delayed, would have him seem fairly typical but I knew. He is 3 and doing so well, I'm not in a rush to pay someone to tell me something I already know, not yet.

Boy child #4 pushed me over the edge and I realised the depth of my executive functioning struggles and social anxiety. At the ripe old age of almost 34 years I began trialing meds, which I had always been against due to their over prescription in young children, and it changed my life. It turns out I wasn't bad at academics. I just had never really been exposed to anything academic that interested me.