Time has recently turned my teenage son, with special needs, into an adult. It seemed to happen so fast. Where did the years go? I guess I was so busy engrossed in parenting him, that I lost all track of time. Now, things are changing and I am trying to make the adjustments necessary to continue on with our lives and what is to come next.
What is to come next? For me, honestly, not much changed other than the funding and financial support I was receiving, that changed. Financially, I have lost funding for certain areas of programming and activity offered my son as a child. But then again, new financial support kicked in and perhaps compensated, slightly, for the other loss. It still doesn’t quite balance out. My son now files his taxes every year, so that is new.
With my son, Cobi, the next couple of years will remain relatively the same. He is still in high school and is permitted to attend high school until he turns 21 years old. He is in the Life Skills Program, for individuals with special needs. Cobi has been diagnosed with a Developmental Disability, Anxiety Disorder and OCD. The amazing thing about the Life Skills Program is the hands on attention and support my son receives in the school. His Director, Lisa, is just incredible with all of the Life Skills kids, she truly ‘gets’ it. I couldn’t ask for a better experience in school for my son.
This magical number 18 seems to bring a multitude of emotion and unease for parents. 18 years old seems to be a cut and dry distinction between immaturity and maturity, when really, it has nothing to do with it. Try to tell society that, and the government for that matter. My son still needs 24-7 care. That will never change. Someone will always need to be with him, to keep him safe, progressing through his daily life activities and to just simply function in society. There are a few aspects of his disability, and now with the added OCD element, that inhibits Cobi from just going off and living his life on his own.
So the biggest concern for me will be when he completes his high schooling. For now, my son is cared for in a controlled setting, by professionals who understand the ins and outs of my sons disability and disorders, on a daily basis. But what about after high school is all done? That ‘free time’ that I have now with him in school won’t be there anymore. I will have my son in my care every minute of every day. I certainly won’t mind his company, I love my son. However, I will not lie to you, I have thought of the long term with this new 100% of the time responsibility that will come upon me. Up until now, 6 hours of the day, 9 months of the year, have been out of my hands. I have shared the responsibility of caring for my child with the high school. I will need a new support system for those times when I just cannot be with him. But, there is one other aspect of change that weighs on my shoulders… Let me clarify ‘free time’.
I work, not a full time job, I can’t, I need to be available for my son when he needs me. But I do work. I am a single mom and because I do not have the 9-5 income that most people bring into their household, I cannot afford a worker to be with my son. Once he is out of school, work may end up changing, or disappearing. Then what?
This is the part that I am still investigating but I have an idea of what I need to do so I can tell you that I will be ok. Somehow, some way I will be ok. I have survived so much with this child over the years, I am sure this next chapter will work itself out just as the first chapter did. It wasn’t easy, and I know the next years ahead won’t be easy either, but I know it will be ok. See, the deepest, most difficult part of caring for my son has been in raising him. I am now beyond the figuring out stages of how to manage and handle the disability, disorder and behaviours. Things have leveled out for us. It is just instinctive now, how I need to handle things with my son.
Many of you are still in the young childhood stages, trying to maneuver through the behaviours, getting help and even trying to understand the special need your child has . Once you get to this stage in their life, adulthood, that part of it has all been dealt with. Don’t get me wrong, new things can develop along the way, they did with my son, but for the most part, you have handled the most difficult by then. You are already in a zone of preparation for any new type of issues, if they come along.
I always keep in mind that money is not a constant. It comes and goes without so much of a conscience. There are always resources out there to tap into when in need. It perhaps won’t make me rich or famous, but hey, I haven’t been rich or famous up until this point in my life, I am sure I won’t lose any sleep over it. I do have a plan, I have been planning it for a while now. Planning is good strategy for parents who are single and/or raising a child with special needs. We live with enough surprises in raising our special children, we certainly do not need any more. So even though there are few things left for me to uncover with this next step, I do have a plan set in place. Finances seem to be the biggest concern of parents, and so no different for me.
For some of you parenting your special needs child, your journey transitioning into the adult years of your special child will look very different than mine. Some of you have two incomes coming into the home. Some areas of the world offer differing programs and incentives for special parents. Some of you will be able to let your child progress onward into their adult years independent of you. The one piece of advice I have to offer you is this: PLAN FOR IT ahead of time. Don’t wait for it to creep up on you at the last minute and you end up missing out on funding, programs and incentives for preparing this next stage in life. For my son, in Canada, he needed a psychological assessment first, then a long 6 month dragged out process of paperwork to gather and fill out. Then, the next step funding can be implemented. I was then made aware of community programs and activities offered to my son for his adult years.
So please, think ahead and be prepared for this transition in your special needs child’s life. And not a year in advance, I recommend at the latest, begin the transition at 16 years of age. If there are any doctors forms, assessments or recommendations, you need to give time to make those appointments, and fill out the paperwork. Some specialists have waiting lists of over a year and a half. There are different types of housing to consider for your child, depending on the intensity of the special needs. Some of you, your child will progress into college, however, you may need to investigate how they can accommodate the needs of your child. Will special arrangements need to be made? Regardless of the degree to which your child has need, and whether or not you will remain completely responsible in caring for them, planning ahead is always a wise choice, so be proactive with this next step in your special child’s life.