Welcome to my son’s world.
This is our son. He was diagnosed with autism (mild) and intellectual disability (mild), oppositional defiant disorder and an anxiety disorder at the age of 12 after 8 wrenching and difficult years of seeking help and answers. It was not until he was 16 that a pediatric neurologist added a mood disorder to that diagnosis that life calmed down at all. The mood disorder is similar to bipolar disorder and I will use that term to help you understand what is going on.
There are all neurological disorders that cannot be “cured”. They can be managed with medication, education and empathy. None are easy and finding the right balance to achieve maximum success is a long and exhausting road. You are never sure what is being impacted and how it is affecting the other difficulties Mathew has.
It is a very lonely life for many including our Son. One of the attributes of autism is a lack of social skills. You might think this is not a big deal but I can assure you of the opposite. We don’t appreciate how much we learn and pick up just by being around our families and friends. For those who cannot learn from the invisible signals and vibes it is like landing in a completely foreign country where you don’t speak the language and don’t know the customs.
We are currently crossing from the land of child to the land of adult. This means that we have to establish a trusteeship for Mathew so we can continue to manage his affairs. Often this is an unspoken agreement between child and parents but for legal reasons, it will cause problems in different areas. When the disabled person is considered an adult, agencies and banks, etc, no longer will share information with the parent automatically or at all. Not without that precious legal document saying you have the right to his information. Yet more legal wrassling, time wasted… hours of appointments, speaking to experts and whatever else it entails. It isn’t fun, I hate it but it is necessary.
Where is Mathew now, you wonder. He graduated from high school in June 2011 and we found a day programme that suits his needs for now. It is a non-profit agency that runs a business plus other programmes specifically for intellectually-impaired adults. Technically it is for people aged 19 and over, which Mathew won’t be until March 2012. He was allowed to start early as there is a gap of services available between child and adult in this province. The stipulation is however, we pay for him to attend Key Industries. Once he is 19 the government will pay the fees because the medical board with Social Services New Brunswick (provincial government) deemed Mathew to have a long term and severe disability.
That designation enabled Mathew to start collecting social assistance. There is another agency in town, the Association for Community Living, that works with disabled adults and different businesses in the community to try to get people out and working. These jobs are mostly cleaning and shelving in accommodating stores. This association assigned an associate to work with Mathew and see if he can get out in the community to work at least part-time.
This is another time-consuming venture that doesn’t happen overnight and is ongoing.
Mathew likes Key Industries and he is so very happy he is out of high school forever. At Key Industries he has made some friends and doesn’t worry about his behaviour or how others perceive him. I can’t imagine the relief he must feel after years of being bullied, ignored and whatever else you can imagine that happened in school. I am just as relieved as he is ~ homework assignments, daily school life…all of that was a neverending nightmare that drained my energy one drop at a time, one minute at a time over the years and years he attended school.
Mathew lives with us and will continue to do so for a while yet, if not years. We also are preparing for his future without us as it is likely he will outlive us. Deciding who can be entrusted with his care after we die is extremely difficult and depressing. How can anyone understand or love him unconditionally like we do? In his life he really only has us, his mother and father, for support and companionship. It is something we have to do in order to complete a trusteeship but no one said it would ever get easier.
There is also ongoing grief that one must come to terms with, when your child with a disability grows into an adult. All around you your family and friends are moving into their next phase of life… the one with a bit more freedom, perhaps evenings out or a weekend away together. Not so for us. We have left Mathew for a day but even then you are always worrying about him, his unpredictable moods, how easily he scares, how lonely he gets. You watch everyone drift off into their world yet yours doesn’t change. It won’t change either and people just don’t understand. Maybe they don’t want to and maybe we’ve/I’ve changed enough I don’t care anymore. Socializing? Very difficult. Maybe once or twice a year I get out without a family member in tow. There are no friends here to hang out with because friends take time and commitment…of which I can’t give either. It is always about the disabled child/adult and their needs.
This is not for sympathy but for awareness and understanding. If you see my son out there on the street, be helpful and smile. Your moment of kindness will impact him long after you forgot about the encounter. Knowing there are people out there who can spare him a moment or two reduces my stress level for a minute or so. That’s worth its weight in gold!
