What do you see?
Each month, I reflect on what to write in this blog. This month I have had lots to think about. The last few weeks have been personally stressful for me as I have helped one of my children get ready for and adjust to a new phase in his life. There are times when it has not gone well, and times when he has exceeded our expectations. I commented to my manager that on the surface my child looks like a very able young man; he is intelligent and well spoken; but he has high functioning ASD and finds many things in life challenging. Tasks that other people take for granted are harder for him. Very little of this is seen by others. We don’t talk about it in great detail in order to protect his dignity and build his self-esteem, but the stress and anxiety he experiences and the worry it can cause us in turn, is immense. This is rarely seen by others either. I learned a long time ago to be careful about what I shared and who I shared with.
During a work meeting the other day we had a staff discussion about how challenging it can be for parents to have children with additional needs and how much you have to fight for, on so many levels. We expressed our sense of awe at how tenacious and dedicated many parents are. We acknowledged that so many parents do not get the support they or their children need, yet they carry on regardless. They get up at the beginning of the day, after just a few hours’ sleep (which can last for years) They prepare special diets, feed children who would normally be otherwise feeding themselves, and take care of personal hygiene needs beyond the age they would be expected to do so. They spend hours researching what might potentially help improve their child’s life, attend endless medical appointments, write letters, make phone calls, go to meetings, battle authorities, do therapy, administer medical treatments and countless other tasks. Often they do this against a backdrop of anxiety about their child’s welfare and sometimes with little support. They have to dig deeper than most people and find extra depths of energy, patience, and resolve. They have to learn all sorts of things and develop skills in areas they have never even thought about before and do so with little energy remaining, after it has been expended on caring.
Many parents have shared with me how hard it can be. In particular they have talked about all the things that people don’t see. For example, it is common for parents to relate stories of how their child’s school report that the child doesn’t have any difficulties whilst at school, yet the child comes home at the end of every day and “lets it all out” in a safe environment. This is not seen, but it happens. I know of children who come out of school every day and hit their parents, throw shoes at their Mum in the car on the way home, rip up their homework, fight with their siblings and have meltdowns because they are anxious. Their stoic parents finally calm them down, only for the battle to begin over again the next day…often starting with refusing to go to school. I had a family tell me yesterday that this happens to them, but the school don’t see it. Tony Attwood (Asperger Syndrome s expert) describes it as “the child may be very conscious of the necessity to follow the codes of conduct in the classroom and to try not to be inconspicuous and behave like the other children. This pressure to conform and retain self-control can lead to enormous emotional tension which, like a compressed spring, is released when the child reaches home”. I love the fact that he also goes on to say “it’s a feature of ASD and not the parent’s inability to manage them”.
Another example of what people don’t see was expressed beautifully in a programme on the BBC a few weeks ago titled “a world without Down Syndrome”. The documentary was examining the NIPT testing now available to screen out Down syndrome. I’m not going to discuss the whys and wherefores of screening. I wanted to share with you some of the things that people participating in the documentary said about “what people don’t see”, because I found them thoughtful, uplifting and insightful.
The first truth to come forth was from a pioneering speech and language therapist Sue Buckley, who speaking about people with DS said “what we’ve learned is that it’s a profile of strengths and weaknesses. We know that learning from listening is difficult, but there are strengths as visual learners and applying those principles has made a difference”. According to Sue Buckley 80% of people with DS could learn to read if taught in the right way. With the right support the majority can live independent, ordinary lives. What I found thought provoking about this was not the staggering statistics or the remarkable information; I was aware of it beforehand, but her emphasis about strengths and weaknesses. We all have them, but most of the time they are not profiled by others. When people look at me or think about me they see me as a whole and not just my weaknesses. When we look at people with disabilities we tend as a society to only profile the weaknesses and overlook the strengths. We don’t see the whole person. We have a tendency to define them by their disability and not see the whole person. In that way we are creating disability as a social construct.
The programme went on to highlight that the information presented by medical professionals about Down syndrome can be biased in this direction. This is true of many types of disabilities and can occur both before birth and many years later (as is the case with autism). Oftentimes parents are given a list of medical characteristics and things that can go wrong. Parents are now rightly arguing “but that’s not just how it is”. There is more to it, more to my child than just a list of limitations. I loved the Icelandic professor in the documentary who talks about the janitor in his office who has a son with Down syndrome and states “there is nothing more beautiful than seeing them together; they have a strong bond; there is so much love between them”.
I found this poignant because it reflects my own experiences too. Yes, my parenting experience has brought me far more challenges than I ever anticipated, but it has also brought me far more joy than I ever thought possible. That’s what people often don’t see. The other day I walked past my son and said “hello my lovely _____(his name) and he replied “hello my lovely Mummy”. You have no idea how much that made my day!!!!! He’s not renowned for being affectionate so my heart sang to hear him say this. It was a special moment. Life with a special needs child is full of moments like these. That’s what you want people to see. The laughter, the smiles, the achievements, the interaction, the cuddles, the togetherness, the rewards and the small milestones (to someone else) that represent BIG progress to you. They are hard won, but all the more precious because of it.
I also loved hearing in the documentary from the Coronation Street actor Liam Bairstow (who has DS). What a charming, cheeky character? The interviewer asked him about his role and what it was like to be on Coronation street? He spoke of how great it was, but that his Mum cries every time she sees him on tv. He shared a funny anecdote about how she keeps telling him “how proud she is of her baby” and that he has to keep reminding her that he is not her baby anymore, and that he gets embarrassed by it. Just like any other teenage boy. The interviewer went on to ask him “what he wanted to achieve next?” With a cheeky smile he went on to state that what he wanted “was an award and a girlfriend”. In response, the presenter commented …”just like Leonardo de Caprio”. That just summed it up. Just like Leonardo de Caprio. or you, or me, he has dreams, desires, aspirations, thoughts, feelings and emotions and that’s what you want people to see.
Written by Alison Mann on behalf of Integrated Treatment Services
