While Elisa and I have never met in person, from our very early interactions in an online forum, it was clear she is a woman who exudes love, warmth and empathy, a woman with a strong faith, and a woman devoted to her family. As it turns out, we are both mums to all boys and also have exceptional taste in boys names. Elisa, thank you for sharing your most recent challenges with us and hopefully helping other parents who may be on a similar journey.
It’s funny the things I find myself doing as a Mum…I wonder if you do it too? I notice things about my children, little things and think, “Hmmm” and then I tuck the observation away in my heart and leave it there. I’ve done this with my youngest son Reuben quite a bit as well as with his three older brothers. Whether you’re parenting for the first time, or experiencing something you didn’t expect as a parent, this puzzled-observer thing can happen a lot.
Reuben has Down syndrome. After being diagnosed prenatally with Trisomy 21/Down syndrome at 20 weeks, he was born on March 24th 2011, four weeks before his due date. We journeyed through the early days as best we could, with me researching Down syndrome like a crazy woman, going to the myriad of specialist appointments, joining the Baby Group at Early Intervention and eventually beginning to work with Reuben’s private therapists at around 18 months of age.
I read articles describing the typical developmental patterns in kids with DS and watched as Reuben met many of these milestones, and discussed the ones he didn’t with various members of his therapy team. I was keenly aware of not comparing him to his typically-developing peers, but I also tried to avoid comparing him to his buddies with DS, both in person and online. As they say, every child is unique, and Reuben was and is Reuben – he’s at where he’s at and that’s okay.
Even though I tried not to notice, I’d observe Reuben struggling to interact with other children or adults in the same way often younger children with DS could. “Hmmmm,” I’d think and tuck my observation away in my heart. These curious little observations began happening more frequently from the time Reuben was about one year old. Socially he seemed delayed – even getting him to get him to smile took a great deal of effort on our behalf but, even while noticing this, I remember thinking maybe it was “just part of Down syndrome.” I noticed Reuben splashing in the bath in a repetitive way on numerous occasions and remember thinking it looked like an autistic behaviour. I mentioned this to Reuben’s early intervention teacher and we agreed it was probably a fun sensory thing to do, quickly dismissing autism as a reason for the behaviour.
As Reuben grew older, I noticed he found it increasingly difficult to stick at an activity – he’d throw toys rather than playing with them, he’d swipe activities off tables, and would move quickly from one thing to the next. Sometimes I’d notice him rocking his head from side to side as he went to sleep, and doing the same thing when he listened to music. I noticed him enjoy pulling things out of boxes or shelves then put them back in again.
At around 3 ½ years of age, for no apparent reason, Reuben lost all the speech and key word signs he had learnt up until this point. He also lost the ability to feed himself with a spoon. All these things I quietly noticed, unsure of what to make of them but feeling increasingly concerned by what I saw.
In August 2015, a fellow T21 Mum and I flew to Adelaide for the inaugural National Down Syndrome Conference. Professor Sue Buckley and her team from the UK taught us how to help children with DS to develop language and communication skills, how to learn to read, develop speech, play and social skills, as well as number and cognitive skills and much more. But throughout the conference, as wonderful and inspiring as it all was, I began to feel confused and frustrated, often thinking there was no way Reuben could do what they were suggesting as he couldn’t sit still long enough to learn anything! My head buzzed with thoughts of “What is wrong with him?” “What are we doing wrong as parents?” and “Why can’t he do the things other kids with DS can do?”
It all came to a head in March 2016 when, in discussions with our Speech Therapist and Occupational Therapist, I said, “What if it’s autism? What if Reuben is on the Autism Spectrum?” [As background to me thinking to ask this question, certain immediate family members have what we affectionately call “Aspie sprinkles” – they have certain traits of Asperger syndrome/ASD Level 1, but not enough to receive a diagnosis of ASD.] When we put the umbrella of ASD over Reuben’s challenging and repetitive behaviours, suddenly everything made sense. This was also the reason why strategies most successful in engaging children with ASD (like DIR Floortime) have been used to successfully engage Reuben. The use of visual supports and schedules at home and school also worked well for him, which is usually the case for children with ASD.
While I grieved the thought of Reuben being on the Autism Spectrum and all that might entail, I also felt incredibly relieved to have a possible explanation for Reuben’s increasingly challenging and puzzling behaviours. We were put on a waiting list for an Autism assessment with the Tasmanian Autism Diagnostic Service which eventually took place on September 21st 2016. The Clinician diagnosed Reuben as being on the Autism Spectrum stating, “Reuben will require very substantial support (level 3) in term of his social interaction and social communication difficulties. He will require substantial support (level 2) in term of his restricted and repetitive interests, activities and behaviours.”
At last we had a concrete reason why Reuben has difficulty regulating his behaviour, why he has such strong sensory reactions, and why he struggles to sustain most social interactions. As weird as it sounds, I was so elated to finally have an actual diagnosis that I bought a bottle of Champagne on the way home to celebrate. What is there to celebrate about the diagnosis of ASD you may well ask? I celebrated no longer having to berate myself regarding what we may have been doing wrong to make Reuben behave the way he did, and I celebrated no longer having to question my judgement about Reuben actually being on the spectrum. My mind-chatter of “Is he on the spectrum? Maybe he isn’t after all…maybe, maybe…” stopped. We chose to celebrate all Reuben is and the wonderful life he is going to have. In doing this, I assure you we are not in denial regarding the challenges that may well await us in the future, but we just know will get through those moments with patience, love and support.
The day following Reuben’s diagnosis, the reality of his increasingly autistic behaviours hit me. Reality hit me harder still when the report from the Assessment arrived in the mail, in all its detailed glory. I rang a friend who has much experience with autism. She compassionately listened as I tearily told her how overwhelmed I was feeling and wisely said, “Knowledge is power and with this diagnosis you now have the opportunity to learn so much more about autism and how it impacts Reuben.” The diagnosis will help me understand my wonderfully complex son and with this understanding I can help others do the same, and that is something to celebrate!
The diagnosis of DS/ASD is becoming more common among children with Down syndrome as health professionals realise it is possible for the two conditions to coexist in the same child. While compared with autism alone, there is relatively little research, information and support available, however, this is slowly changing. Online support groups do exist and information is out there…you just need the time to read it!
If you are ever concerned about any aspect of the development of your child, I strongly encourage you to find a health professional who will listen to your concerns. Keep seeking answers to those “Hmmm” moments until you are fully satisfied you have found the answer to them.
Last Sunday, I went shopping at our local department store and found myself in the toy aisle witnessing something miraculous…an ordinary, everyday miracle…an interaction between a toddler and his Dad. The little boy was excitedly pointing at a toy on the shelf and the Dad was talking to him about it. This beautiful moment came and went without anyone noticing perhaps but me. Shopping expeditions with Reuben are somewhat of a challenge and often involve items being pulled off shelves then thrown onto the floor, if I’m not quick enough to catch them or drive the stroller in the middle of the aisle. My response to seeing this everyday miracle literally stopped me in my tracks with my mouth open, with my heart in awe of such a simple and commonplace interaction most of us take for granted.
Even within the realms of DS/ASD, ordinary everyday miracles occur. Sure they may not happen in the way we are used to seeing them but they still happen…a gentle moment of a little hand resting on yours, an eye-gaze that says ‘I love you,’ a time of playing peek-a-boo or pushing cars on the floor together, or of sharing a moment of silliness. These are all moments of connection – ordinary miracles – connections without words, connections of the heart. These moments, these miracles which only you may witness are yours to tuck away in your heart, and are yours to keep forever.
And so we will keep celebrating every connection, every tiny milestone, every ordinary miracle, or as the case may be, every extra-ordinary miracle…after all, that is who Reuben is, our extraordinary miracle.
Elisa, her husband and their four boys live in Tasmania. She has a Bachelor of Music and a Certificate IV in Christian Ministry and is currently a stay-at-home-mum and primary carer for their youngest son Reuben. For work experience in Grade 10, Elisa elected to spend two weeks in a Special School, never realising the journey she would find herself on many years later. Elisa has written another post on Mummalove, which you can read here.