99.7% Sure

By Rae Spatt

We all want our children to grow up strong, healthy and happy. What then, when we have a child with special needs?

The midwife handed me my son after a relatively easy birth and with the cord still connected we both hopped into the warm bath awash with the post birthing bliss. I stared at his little face, my Gemini boy, wondering how I could have been so lucky to have such an angel in my arms. His skin was perfect, not all red and wrinkled or yellow and jaundiced, his hair lush and dark with long thick eyelashes and his demeanor was calm and relaxed.

Home birth is indeed a unique celebration of arrival and for the next two months family and friends welcomed Lucas to our world.

Not having had the routine hospital pediatrician examination, his father and I took him for a visit when he had a little sniffle at about eight weeks. We so proudly placed him on the table for the doctor’s appraisal.

That was the last moment of my life lived in an innocent shelter of mostly everything being safe, secure and known. After a really long look at Lucas, prodding and poking at him the doctor turned to us and said “I’m ninety nine point seven percent sure your baby is Down’s Syndrome.”

“He has the soapy textured skin typical of this condition and the flat nose with Asian eye folds instead of Caucasian type creases. You see the line across his palm with no break, this is also an indication, along with his respiratory problems.” A few simple dispassionate sentences destroyed all inner equilibrium and as one does in shock, my body and mind went into shut down, and I was watching a movie, a horror film with me, Lucas and his father, the main characters. The evil doctor was telling me lies of someone else’s baby’s diagnosis, some other family’s nightmare; bad things like this do not happen to good parents who do everything ‘right’. Clutching at the point three percent possibility that he was wrong was all that got us out of the office. A test with results in five days would confirm his suspicions and he would get back to us. In the car going home the father said he wanted to drive all three of us over the nearest cliff, the mother character in the film replied he could not as they had their daughter Holli to consider.

The odds were stacked against us, too high for a reprieve and when confirmation came, ways to cope with parenting a disabled child had to be found. At this stage rather than go into technical descriptions which can be found through the internet, medical books or Down’s Syndrome Association, I’m choosing to describe how it was and is for me as a parent, emotionally and intellectually adjusting to the whole overwhelm of being landed with the one in twenty chance of having a special needs child.

Firstly, the language used is so absolute. The doctor said “he's Down’s Syndrome”, as if Lucas was of another species which twisted my heart inside out when it could have been “has Downs Syndrome” taking the level of the problem to someone who ‘has’ hearing difficulties or speech impediments which can be specifically addressed and dealt with. Worse was to follow at the confirmation meeting. So much data presented was from statistics gathered in institutions, where monitoring does not take in the more normal ‘home’ upbringing. We were told he would only ever reach the intellectual capabilities of an eight year old. That he would have heart problems, possibly even fatal, that his nasal passages would have to be widened, his tonsils removed and speech would never be normal, his fine and gross motor skills always underdeveloped, his hearing debilitated, his health chronically bad. Too much information when one is in trauma.

To make it more simple in my mind I found out that Lucas had one extra chromosome which occurred at conception causing the characteristics of a person who has Down’s Syndrome. The word syndrome means a wide range of indicators for the condition and just like any child, he could have more potential in some areas than others. I made a decision to take it one day at a time, avoiding experts and their books.  Some would call it denial, we called it survival.

The social dynamics that come into play are a minefield of adjusting to your own and others’ expectations. I would whisper out the words in my own state of disbelief to inform people who invariably asked if there was a cure. “No, there  is no cure.” Suddenly people cannot look you or the baby in the eyes; in their helpless discomfort they say nothing or give futile, albeit well-meaning advice:
“You must think yourself very fortunate as he could have autism or cerebral palsy.”
“Down’s Syndrome people (that label again) are so loving, it will be a blessing for you.”
“I could never do what you have taken on, you are so strong. It’s your cross to bear for this lifetime and you will be rewarded.”

All the time a voice is screaming inside that I am not strong, that this is not a blessing (a healthy child would have been), that I don’t deserve to bear this cross, that just because he’s not in a wheelchair I should be happy! In fact the first year was a burning hell of grief, documented as worse than cot death sorrow because it continues every day, the loss of what might have been. It was the silent, demonstrative support that helped.

The pain eased when a friend would come and hold Lucas as if he was still precious, unthreatened by his label because they knew he was a human being first and could simply love him. Unspeakable thoughts haunted my dreams; I would wake up in a sweat when he cried to breastfeed him for a future so uncertain that sometimes giving in to black despair seemed the only option.

However, when you have another child and a living to earn and a family to hold together what can you do but accept and adjust? Guilt that I could not cope swamped me, shame that an imperfect baby had come from my body permeated it, apprehension about bringing this problem sibling into Holli’s life filled me with fear for their lives together. This may sound like very unconscious thinking but the panic pushed away all rational approaches and forced me into a place with no reference point to normality.

Although it’s not easy, and brings more shame, I have to admit that we went to the adoption agency to inquire about giving him up to others who were desperate for a child but did not fit the ‘normal child’ adoption profile.

The kind and non-judgmental social worker said we were rather poor candidates to let Lucas go as we had bonded with him without knowing his label for a few months. Also, we were in our thirties and wiser in the ways of life whereas  parents who could give up their child were more often in their twenties when egos are more fragile, the child is a firstborn, they make the discovery at birth in the hospital and never take the baby home. What I learned from my experience is not to make assumptions, right or wrong, about what any parent may do in my situation and that there are exceptional parents in waiting who will pour love into a baby with any kind of label they are lucky enough to be given. If they could do it, then why not me? What would be worse, to be thinking every day for the rest of my life of a baby given away, or to watch one growing up handicapped, disabled, unhealthy, intellectually challenged and with special needs? We decided on the latter because the living, breathing tiny bundle of Lucas had been given to us to care for and the prospect of handing him to someone else forever was at the very bottom of my terror barrel.

Lucas himself just grew up cute. He was on the front of the Down’s Syndrome brochure because he was taller than most without the severe mongoloid looking eyes. We say he has Up Syndrome because he has no greed or aggression, no violent streaks or hatreds. He is gentle and stubborn, sensitive to loud noises and arguments which he does not like and is determined to do a little less than he is capable of because he charms us into letting him. When his long eye-lashes are noticed I say the kid has to have some breaks! We took him to the naturopath and he has had homeopathic remedies his whole life. Still he suffers from asthma attacks, gastro difficulties, constant nasal congestion, wracking coughs, colds and flus, diabolical teeth complications, chronic skin rashes and eczema, hearing problems and many more health challenges but he does not have a dangerous heart condition so life expectancy is from 30 to 50 years. He cannot father a child but he can be a loving and sometimes annoying little brother. His concentration span is short unless he is totally engaged in a video or CD or any activity he can do without struggling. Like the killer eyelashes, he has the elephant memory. He will remember the name of someone he has not seen for years, or an actor in an obscure movie or what we ate two Christmases ago. He has hit adolescence and is a little less discreet than he could be with the changes that puberty brings. We have to give him the skills to assimilate into society, so when I wanted him to be vegetarian like his sister his father refused, saying one label in his life was enough.

His favourite food is fast and I had to let go of all those concepts of what is good for him so he can fit in and feel comfortable. I also have to curb my impatience when parents complain about their children having problems like low school grades or a milk allergy. Even though I want to shake them and say “You are so lucky to have a mainstream child”, instead I take a breath and remember the old Indian saying “Never judge another until you have walked 20 miles in their moccasins” and try to feel empathy for what they perceive as huge dilemmas. It became obvious over the years that his particular label is not very fashionable as a cause for research or fund raising in a society grappling with the more sensational AIDS, SIDS or conditions like ADHD. Down’s Syndrome is a bit ho hum, been around forever, found in every race, in every country. It is interesting to note that in Polynesian cultures it is very prestigious to have a child like Lucas and they are treasured.

Secondly, what needs to be discussed is the fallout on the family. We did not make it. His father and I were so busy being brave taking Lucas on as an extra special child with all the time-consuming heartache that comes through doctors’ visits, social workers, early intervention programs, physiotherapy, speech therapy and our own disappointment, that we lost each other. Holli felt unspecial because she was not handicapped and we lost her also. We had a few counselling sessions that were a disaster as blame was placed unfairly everywhere which resulted in deep tears in our family fabric. In the ignorance of ill preparedness for a special needs child harsh words were flung around fracturing the unity we had previously enjoyed. Lucas was a live bomb tossed into our home, forever changing how we saw ourselves, him and our world. Holli suffered from the divorce of her parents with the extra dimension of Lucas living with his father and she living with her mother. It happened that not only did we as parents split up but we also divided the siblings, which caused varying degrees of individual anger, resentment and hurt for a decade.

Suffice it to say the pressure was unbearable, the test too hard to keep things normal and we collapsed under the weight of the whole scenario, punch drunk from all the failed expectations polarised in the being of Lucas. Lucas the innocent was growing up despite all the anguish around him with inspiring contentment and good-natured sweetness.
After slowly accepting the disintegration of our fantasy ideas about parenthood and family life and witnessing love, often from Lucas, soothe the bewilderment, fast forward to 2002. Holli has an OK connection with her little brother, although she is totally focused on a thriving advertising career in London. She and I are overly sensitive to any comments that contain the ‘retard’ word used as a casual put down (if people only knew how it makes the knife twist) and have asked our friends to respect that. Movies like Something About Mary are borderline offensive to us as handicapped jokes are not so funny when you have such a person in your family. If we ever sense discomfort or cruelty in another when they are around Lucas we remove ourselves and him immediately. In giving him a chance at a reasonably independent life the fear of not adequately protecting him from predators preying on his friendly, guileless nature is a nagging concern.

His father and I talk through his ongoing health and education issues, discussing the best tack to take. As well as us he has two step-parents who care for him, a loving Nana and an extended family of step siblings and friends who he holds dear. In June this year he turned 17 and is learning to use his new mobile phone. He is not too bad at ball games, especially cricket, dances like crazy, has a girlfriend, goes to a fantastic high school where they teach pizza making and road crossing skills and he enjoys cruising in his own company. His biggest drawback is his speech, which is difficult to understand as he stutters when nervous and is obviously frustrated when he cannot contribute to a conversation. It also says something about our impatience in not allowing him to get sentences out as it interrupts our fast pace talk. The unsung, tolerant and giving teachers and carers who fill his daily, ‘special’, life truly enjoy being with him because it makes them feel so valued as they genuinely are by our families.

In hindsight, after many bittersweet years, the arrival of Lucas in our midst is neither a disaster nor a blessing. I do not feel punished, that it is his or my karma or that I had to learn any huge lessons. He is one of the many manifestations that creation, in its mysterious wisdom, placed here on earth and I am not concerned anymore with the agonising ‘why’ question. What I do care passionately about is that Lucas receives and gives love so he has a real exposure to the divine in being human, just like he gives me a heartbreaking, unpredictably tender experience of mothering, outside the square.


For more information
The NSW Downs Syndrome Association is run by parents who have children with Downs Syndrome.
31 O’Connell Street, Parramatta, NSW 2150 Ph:  02 9683 4333
Website www.iinet.net.au/~dsansw/
Latest publications:
Video: “Parent to Parent”
Books published by Silvereye Educational Publications (02 9433 9797):
“Babies with Downs Syndrome”
‘Downs Syndrome The Facts” by Mark Selikowitz


Rae Spatt was a school teacher by profession and has eclectic interests including various businesses, decorating, Pilates, art and of course, mothering.

Published in issue 3, September 02