The Black Hole

It doesn’t matter where you grow up, where you live now, the career path you follow, what sport you play, who your friends are – regardless of so many different factors there will always be those considered the “black sheep” or “The Joneses”. Wherever you go there will always be those that are considered and those who are rejected/passed over. We don’t like to talk about such things but they exist.

People like to compare themselves to others to gauge how good or bad their lives are. There are also those who compare themselves to others merely to feel better about their own lives or simply themselves. Often we look the other way when things are ugly or scary…like a child we think if we don’t acknowledge something it simply goes away. I often say “you can run but you can’t hide” eventually whatever you are trying to hide from will find you.

My demon for a long time now has been autism. My beautiful baby boy, Keyan was diagnosed at 18 months old. All I knew at that time is that my son would be different but I didn’t know how. Like most (not all) parents I scrambled quickly to get help for my son. I spent very little time doubting the professionals who told me my son had an Autism Spectrum Disorder. I knew denying autism was an ego thing –after all who wants their child to have “special needs” or even worse be “labelled” as such. I have to tell you once he was diagnosed I never denied it. If autism was part of Keyan then I was going to accept my son fully and completely. As Keyan’s mother my job was to accept things and move forward to help give him the best life possible.

I prayed that Keyan would fall onto the “high functioning end of the spectrum” – that he would be able to talk and go to a regular school. Both my dreams were shattered. As Keyan aged it was obvious he would never speak and that meant he lacked the essential component to participate in a regular school setting - language. I mourned the fact that my son would never say “I love you” and as for going to a regular school that was out of reach.

When he was first diagnosed I said to my husband – “there is more to our story – I refuse to simply be the parent to a child with autism – there is a bigger picture – something amazing will come of it”.

We learned how to live in this world with autism. Although my son cannot say “I love you” he shows us in so many ways that he does…a smile, a hug, a wave and with the sounds of a jubilant soul. We are always most comfortable at home where things feel safe but we do venture out so that we can be part of the world. Keyan likes; to go for walks, rides on the tandem bike, the movies (mainly for the popcorn) and his top favorite thing to do is go for car rides. Outside of school Keyan participates in programs offered by S.Au.S.; soccer, music, dance, free swim and summer camp.

Now go back to what I said in the beginning. If I cared to compare my son to others I would be crushed. There are so many things that he will never do or become. Sadly, Keyan will never; get a degree, travel, work or marry. The list of things he will never accomplish are long. As a survival mechanism I choose to focus on what he can do – that list is much smaller but I relish in it. I would never strip him of his accomplishments like learning to brush his own teeth, putting his backpack away or getting dressed for the day. I am proud of Keyan! I often think how he lives his life trusting those responsible for him 100% to keep him safe and happy. He has to trust everyone who surrounds him… call it blind faith. Imagine other people dictating your every day. Regardless of how uncomfortable that makes him feel he is pushed on the daily to do things he might not fully understand. As his parents we choose to focus on how happy he makes us. He brings us back to basics and what really matters in life.

Then there are times I am forced to look at the big picture. The BIG picture is so scary that it’s a hard place to go to. Right now Keyan goes to school in the day (like all children) and has S.AuS. activities at night but all that ends when he turns 21 years of age. The government provides education to all until the age of 21 and thereafter nothing. Both the Quebec and Canadian government have nothing in place for “special needs” adults. Of course there are a few places that provide services but they are already filled to capacity, overrun and under funded. I estimate that these places help less than 5% of families in need within the province of Quebec.

So what is going to happen to Keyan (and others just like him)? As it stands right now the government expects me (one parent) to stay home with my adult child and figure out ways to stimulate him. With only one salary how could I pay for private therapies that run $100-120/per hour. There are no day programs to attend. You know how children are hardest on their parents right!?! There is no way I would have the stamina to meet Keyan’s every need – he can be very demanding at times. Then there is the issue of not being surrounded by other people, the opportunity to enjoy experiences and participating in activities that help him learn/become semi-autonomous. Is it really okay for a human being to live within four walls playing on an iPAD simply to get through the day? That is not a life! It’s not okay!

I can guarantee within the first month of staying home with Keyan I will fall into a major depression. I would then be in a situation that not only could I not take care of my son but then myself and my family too. A severe depression could render me incapacitated to the point of hospitalization. Who will care for my son? He would have to be placed until I recover. What does that look like for my husband and daughter? Autism affects a whole family – one day we are one happy family unit and the next we are torn apart.

This past week I was at a conference on autism that covers many subjects; from sleep disorders to financial planning. One speaker in particular resonated with me so much she moved me to tears. When she was talking I started to panic and wanted to run out of the room. Why? Because she was speaking directly to my fear of Keyan having no place to go in adulthood. Her experience so close to mine I was overwhelmed. It could have been me addressing the room. The part of the talk I wanted to share with you is what she referred to as the “Black hole”. That is the space where severely autistic or extremely intellectually delayed people fall. That means everyone seems to be preoccupied with taking care of “special needs children” or those who are higher functioning and have the potential to work. The reality is there are so many that fall into “The Black Hole” category that we cannot ignore them – we cannot pretend that looking the other way will solve the problem. In essence she was saying our children are the ones no one cares about. She then went on to talk about how we have to lobby the government to see us, to hear us and to help take care of us. I truly don’t believe that the burden falls solely on the government but if they want parents and society to take action then they have to do their part too. I believe in social responsibility and that everyone has an opportunity to help, make a difference and leave this world a better place. We need to be there for each other. I understand my son can’t contribute to society, his disability isn’t Instagram worthy and the government doesn’t seem to care (I hope that changes). The autism I live with in and outside my home is an uphill battle. I have the battles I face with my son (the things I need to do for him, the demands, the waking up every night and the tantrums) and then the battles to find proper care for him, the judgement from society and the non-chalant attitude the government has about lack of to services. Nonetheless I will continue to climb until I get the help I need for Keyan and others just like him. I will be the voice for those who do not have one.

Let me state that I am a huge Oprah fan and she often says that being born gives us the right to life. Therefore, the way I see it she means everyone who is born is worthy of the best life possible. I believe that to the core of my being – thank you Oprah. My son may not be able to contribute to society but he is worthy. Keyan is “different not less”. He might not be able to work and pay taxes but he can still teach the world a thing or two about compassion towards others. I want him to be the beacon of light and love. If his family is willing to go to great lengths for him he is worthy - follow that example. Caring and raising a child with special needs is one of the hardest jobs out there. We as parents love our children in ways we cannot find the words to express. I am re-cognizant of the fact that “special needs” isn’t sexy and it’s not what people want to spend their time and energy investing in BUT there is a great need for acceptance, love and support for families like mine.

I don’t have the luxury to compare my life to others because I am too focused on what I have to do for my children and how their future plays out. At the same conference there was a financial planner there to tell us how to invest money to take care of our children when we are gone. For several of my friends this hasn’t even crossed their minds because their children will grow up to be independent. I think of Keyan in adulthood but the place I don’t allow myself to go is what will happen to him when both of us (his parents) are gone. For some people the answer seems easy – well his sister will take care of him. My response is I think she has taken care of him enough and she has the right to her own life. This is a preoccupation only parents to special needs kids have – I believe it to be the scariest of our realities. If no one else loves our children while we are here then who is going to love them when we are gone?

Those are my thoughts for the day…

I find solace in sharing with you. Although very scary at times I choose to share this journey.

Thank you for reading – Audrey

© 2018 Audrey Burt