Families with children with Disabilities — or Exceptionalities or Challenges or whatever is becoming the politically correct term, but more importantly, the term that encourages the most progress toward inclusive practices (I have a hard time keeping up honestly) — face milestones moments, just as all families do. A huge one is the shift from children’s support services to adult support services.

We are adults for the greater part of our lives and want these years to be full and rich; it is the same for those with exceptionalities who have limited resources and challenging circumstances. So there are similarities therefore, to the transition made by typically developing young adults. It’s marked with change, expansion into uncharted regions and anxiety as well. I’ve been told by my friends whose children are the same age as mine, that what I’m feeling is not dissimilar to what they feel. Yet I feel there is a difference. I’m just not always sure what to call it, or how to process it. I’m not even sure I understand it. I just know that this is a huge transition time for our family. We’re all heading into uncharted territory together.

The best way forward for me is to write while we journey. Writing, I believe, helps me to discover…

Joy – quarried from stone,

heavy and layered with life,

glows like a gemstone.

© 2019 Laurel Archer

The circumstances of daily life can be incredibly challenging. Change, which is constant, requires consistent engagement. Life is hard work, but also contains spectacular joyful moments, like gems, quarried from stone. These gems are signposts that remind me God is active and present in our lives and circumstances. So this journal is about the work, but also the joy mined from that work. I plan to write these entires from my phone, so they’ll be more spontaneous, less refined, largely unedited. That’s the plan, we’ll see how it turns out. I hope you’ll read along.

Thus ends the introduction to this new series of posts. What follows are some details of transition for those who are interested. One part fact, one part interpretation, one part political reality, provided to help you understand.

There are a set of support programs that accompany a child from diagnosis to age 19 in BC, unique to the child with extra needs. Caleb and Emma both had Autism Funding, which over the years we used to do ABA therapy, support outings into the community, develop their skills with Augmented Communication, and access special programs. They both attended School District run programs through the entirety of their school years. These were segregated programs that supported them very well for the most part. However they also both had years when this was less true and more challenging for both teaching teams and for Caleb and Emma. Both also had a package of funding for Respite which kept us all on the right side of crisis.

At age 19 individuals lose all services that have been supporting them since diagnosis and they must renegotiate support services for the adult years. Nothing is carried over, nothing is assumed. Eligibility must be proven through diagnosis and assessment; a system of queues and waiting lists must be navigated. It is a daunting and intimidating process. Caleb and Emma are fully eligible for support services. They are both non-verbal, both dependent on support to navigate life in almost every way. Both are physically capable but in some ways this increases both the need to expand their experiences and the concern for their safety while they do so.

Unfortunately, in this province there is a scarcity of funding for people with Developmental Disabilities who need support to make life rich and full. The system, and it is run and by people who care about this unique and exceptional population, is forced to function largely as a crisis response system. Those who need services most are often used as a political gambit around election time, when they release additional funding (more but not enough) to make their party look caring and engaged. The reality is that no party to date has done an exceptional job of this task. Caleb has enough support currently for us to continue to carry out work that makes life possible, but should he need more, we would have to wait in a queue of needs. Emma has nothing but a small respite package currently. The routines that have worked for 19 years aren’t sustainable in this reality.

It’s my job to make sure the waiting is as short as possible – that’s what an advocate does. In the meantime as a mother I still care for the daily needs of my man-child, and my woman-child, juggling work and home responsibilities to the best of, and sometimes beyond, my capabilities.

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