Do you know I recently sat in a child development centre waiting room and got asked by one of the secretaries to keep Liam quiet? Now, bear in mind that they had one activity cube and some blunt pencils and drawn on paper to play with – none of which were of interest him. He had been pulled away from school where he feels safe, taken to one building then to be told to go to another.
Sensing the confusion from me, his behaviour was already anxious but now was escalating. Upon arriving at the new location with barely any toys available and running over an hour late, was it any surprise that he was acting up?
I politely asked the woman (in my happiest tone, so Liam didn’t pick up on my anger) if she knew where she worked? I was disgusted, actually appalled at her asking me… Then, to top off the now two- and- a- bit- hour appointment, Liam bumped into his paediatrician who, rather than saying hello and wave back at him, decided to blank him and walk into his room without the smallest of acknowledgement. Rude. And now I am dreading the next paediatric appointment because Liam will remember it.
At our most recent hearing test at the hospital, I got asked if mum would be attending. I am his mum. No sorry, we need his real mum to go into the test room with him. I am his real mum, we have been here before and he has been our adopted son for almost 3 years. I think they could sense my anger just from that statement, but still they demanded that my husband bring up the adoption certificate to prove that Liam was ours.
Within the first fortnight at school I had been approached by four different parents in the same group telling me how Liam had hurt their child and if I could tell him off and discipline him they would really appreciate it. Not for one minute did they take into account the fact that the kids had just started school and were finding their feet in the classroom, or even think of asking if there was anything they could do to help. To add the cherry on top they always said this in front of Liam, which just broke my heart because he understood and would cry for hours.
You see, not only does Liam face stigma towards his disability, but we as adoptive parents also face stigma. Even some health professional such as nurses don’t even believe what you say. I don’t believe that we have come across one medical professional that has understood FASD.
Every appointment we have been to, every test Liam has had to undertake, and every assessment we have attended, I have had to go armed with different literature, various handouts and books – all at our own cost. The only people who have taken the time with Liam to get to know him and his disability are his teachers at school. It’s heart breaking really. Even his paediatrician doesn’t really acknowledge the FASD, just advises that he may be this, that or the other, and may or may not need medication for the future. Which, let’s face it, isn’t exactly helpful. It’s exhausting having to keep explain over and over again, justifying Liam’s behaviours to strangers who just don’t understand.
Liam has very minor facial features of FASD – he has a smooth philtrum and thin upper lip but other than that, many people would just tell me that he looks like any other child. But behind the physical features, he pretty much has every behaviour or personality trait of FASD at only 5 years old.
I still either get told (normally by strangers) that if I parented him ‘properly’ he would be ‘good’, or if I tried to smack him maybe he’d listen to me. The best one is if I take his possessions away then he’ll understand that I mean business. I mean, please – he’s 5! We try our best to reward good behaviour and ignore the negative, but we’re not perfect parents – sometimes I argue back with him and revert back to a 5 year-old myself arguing with another 5 year-old. My husband and I, parent how we think best suits Liam and his disability because we understand that it’s not going anywhere, and that it’s actually a part of what makes him, him!
What upsets me most, is that even my family ignore the disability. They ignore that his disability makes him who he is. They think he’s cute, gorgeous and funny – which of course he is in every way but if we’re honest, most of the time he is exhausting and tiring and its soul destroying, but we love him no matter what, and would fight as hard as we can every day to make people understand FASD. It’s heart breaking when your own family choose to make statements like “there’s nothing wrong with him, I don’t believe the disability is real, where’s the proof?”
So, my point overall in my little waffle is that I, along with so many other parents who parent this disability, not only face stigma from other playground parents or people in supermarkets but actually we face it from the people who are meant to be there the most for us, like medical professionals and family members. The people who have been there the most for us will no doubt be there for the rest of our lives. The people who have choose to accept Liam and us as parents of Liam will be there till the end – these people come from the weirdest and most wonderful places, but these people are our friends. Some who we have known for years, some we have known for months and some who we don’t even know but are in support groups online, but friends are the family we have chosen and friends are the only people we don’t face the stigma from.
Embrace the disability and surround yourself with the people who will help you the most not judge or discourage you or your child. FASD is real, don’t ever let anyone tell you otherwise, but our children are beautiful and that means that in a roundabout way so is FASD. I know without it Liam would be just ‘another kid’ with little character and attitude and that would make our life boring!