I believe it’s part of the human condition to think we have more time than we actually do. We put things off until later and ironically they never get done. We avoid thinking about things that scare us in hopes that it goes away, things get better or that it will never happen.
When raising a child with Autism we are forced to deal with things sooner than we want to. We have to face the things that scare us most as parents. Our children grow up too quickly and sometimes we are not prepared for what is being dealt to us. Keyan is only 14 years old yet I obsessively fear about when he turns 21 and what his day to day will look like then. The organization I spearhead is working tirelessly to create a day center for adults with severe autism. While I have been hyper-focused on realizing that project it has distracted me from our present reality and the number of people it takes to care for Keyan.
Last week my husband had a work meeting to attend in Quebec City and I decided to tag along since it had been years since I had last visited the gorgeous old city. I jumped at the opportunity to join him and visit friends who had relocated to Quebec City, last year.
For most families this would be no biggie, a 24-hour getaway means simply asking the help of a grandparent, auntie or friend and off we go for a 24 hour sejour. Sigh. Not our reality.
We enlisted the help of my mom, a.k.a. nana to come stay with the kiddies. Manisha although great with her brother cannot be left alone at night with him – we are simply not there yet. In the the past few weeks Keyan has not been himself and we question: is it his hormones? Growth spurt? Seasonal allergies? Medication adjustments required? GI distress? Fed up of school? Simply frustration? Although I was apprehensive about leaving Keyan I had equipped my mom with all the tools necessary and reminded myself that I too have to live life. My mother has been watching Keyan for years. She has been around enough to know his quirks. I solicited Manisha's help too and asked that she remain in tune with her brother’s wants and needs.
Years ago when he was little, Keyan would pick up the salt shaker and chase you with it when he wanted cucumbers. Everyone who helped care for Keyan knew that. It was cute!
Keyan isn’t cute anymore – with a stature of 5’10” and weighing approximately 150 pounds he is no longer categorized as cute. Although Keyan has a handsome face he is not cute. He is no longer that curly haired, hazel eyed, Buddha bellied child – he is now physically a man. In fact, he is too much man for his brain. Keyan has always enjoyed banging on things. So much so I asked his music teacher to focus on the piano instead of the drums. It hasn't helped. Keyan has severe sensory issues and for some reason loves to bang on the walls, table, furniture, windows and mirrors. These actions calm him but little does he know how it stresses the hell out of us. He is big and loud. This I will admit is uncomfortable. Keyan spends his days with either fingers in his ears or earphones on yet he is by far the loudest person in the house. It’s hard on the nervous system – ours not his.
I am happy that my mama bear has been able to speak openly to me about things. Yesterday she declared her fear about watching this big boy in the event anything real every happened. She used the scenario of him banging on the mirror, shattering the glass and seriously injuring himself. What would she do? It’s true Keyan could not be held down to remove a shard of glass from his hand or foot. If he bleeds there is no way to stop it. He hates when we hold onto him and cannot stand a band-aid placed on his skin. Even calling 911 is an extremely hard call to make since these people are strangers to him he would never comply with their demands or follow their simple instructions because he just doesn’t know how. He would be in full on “fight or flight mode”. I understand my mama’s concerns and would never want to put her in that situation. If she is worried watching Keyan then that worries me. I don’t want her to exhaust herself watching over my son. I don’t want her to get to a place where she fears being in his presence. I pray that day never ever comes!!!!
It was hard for me to hear my mother say she no longer feels comfortable to care for Keyan but I knew it was just a matter of time. I wasn’t ready for that time to be now. I am so grateful to my mother who has watched my children over the past 10 years while Kunal and I vacation down south to recharge our batteries. She has given us time alone to keep our marriage strong. Thank you mama bear for all the time you have given to help us on this crazy autism journey.
The same holds true for my in-laws. Both Nicole and Kamal have been instrumental in helping keep my family together. The have watched my children for evening events, weekends and our vacations away. I cannot begin to tell you how much it has made us feel at ease that our children were watched by people who love them so deeply. Nicole recently had a hip replaced and will most likely have to go in for another surgery. It would tear me apart if Keyan pushed her by accident and hurt her. Therefore, we have elected to retire them from service too. Ha ha see – that was a little joke.
After we mourn the fact that we have lost the most amazing babysitters for Keyan – his beloved grandparents – we will get to work to find recruits ready, willing and able to help us raise Keyan. If you know anyone don’t hesitate to contact us.
Once again thanks for reading.