My son John is 25 yrs old and he is having a pretty good life right now. I want to tell you a little bit about how we got here and where we still need to go.
John has Asperger's Syndrome (AS) part of the Autism spectrum. He was lucky to have been diagnosed accurately at six years old but, despite the best intentions of people, there was not a lot of expertise or particular supports available in our community for individuals with Asperger's as John was growing up so times could be very frustrating for all of us (Mum, Dad and younger brother and sister). Much of what existed was not appropriate for John and it became very clear to our family that John's needs would be best met with planning done specifically for and with him. Being involved in our community, to help increase education and awareness and meet other families, helped us to cope and learn.
Because of Asperger's, John can have a great deal of difficulty with the unwritten rules of social interaction, such as body language, social distance and facial expressions. John is interested in making friends, but it is hard for him to establish and maintain friendships. He has great difficulty reading or understanding other's feelings. John is very aware of his differences but is unable or uncertain as to how to address them - it can be very frustrating. Sudden changes in routine or expectations used to cause him great distress. Anxiety has been an ongoing challenge for him. From a very early age John wanted to go to university so we made the move to London and made sure to locate within walking distance of the University of Western Ontario (UWO) to at least give some hope to that dream!
I was lucky to be able to be a stay-at-home mum and got involved with Autism Ontario and the school board through the Special Education Advisory Committee (SEAC) to see how we could be a part of helping to increase awareness and support. Through that involvement I quickly learned the strength of sharing ideas with other parents. I learned plenty - usually in the parking lot after meetings! Through contacts at SEAC I discovered London Family Network and by 2005 became more actively involved with other families who wanted something different for our sons and daughters. I can remember hearing about Windsor Essex Brokerage for Personal Supports and marveling at how it works. The realization that there were others who were working to tailor and individualize things was strengthening and motivating. We met repeatedly with our MPPs and used any opportunity to get our voices heard during the Ministry of Community and Social Services "Transformation to tell them about our desire for another type of option for our kids.
School years got increasingly more challenging, both with relationships and as John's studies became more abstract. John had been suffering more and more from isolation and anxiety, resulting in depression, frustration, rage and despair, especially as high school was getting more & more challenging and his university dreams seemed out of reach. John had some school suspensions for lashing out and raging when frustrated and was involuntarily hospitalized at his lowest and had to stop attending school.
Around that same time a small group of seven families from the Network, six whose kids were soon leaving school, and who had the same philosophy of person centered planning and self administration, began working with a facilitator, Susannah Joyce, to develop plans and budgets to submit to the Ministry. We met and helped each other so that we'd be ready if the opportunity arose for the type of support we were looking for. Through the networking and lobbying we had been doing some Ministry people were listening.
When John was most in crisis we were VERY fortunate to get some SSAH funding and some individualized funding. Through our family network and contacts we were able to find a transfer payment agency who was willing to flow the funds. We were able to choose people who would be assisting and exploring with John. Sometimes they were a good fit, sometimes not, but we had the flexibility to change things if necessary. We did try to hire a facilitator/coordinator for the group of us but that hasn't worked out yet. I could never have done this by myself. The support of the other families and some individuals from agencies who also believed in this option was how this happened.
Slowly John's mental health, coping abilities, confidence, social interaction and outlook all improved. He started going out in the community and the outings became longer and more social. He began volunteering with a support worker at the Archaeology Museum; now he goes once a week on his own. He cleans displays and helps set up educational materials- it changes each week. He also volunteers at the Children's Museum cleaning displays and doing general custodial work. He took some high school classes online and then some self study through adult education; he got his high school diploma. We were lucky there were a variety of options so we could keep trying things and finding people who could help. It was tough on John but he kept at it. I also have to say, again, I was lucky enough to be a stay-at-home mum during all of this time so I could facilitate all of this.
John was finally ready to audit a couple of classes at university - first with a support person; and when he was ready, on his own. He now has his first university credit under his belt and is taking his second class. He meets up with many of his classmates who are also volunteering at the Archaeology Museum. He even had his first paid job as a seasonal Christmas worker at Chapters after years of going to Leads employment and is now looking for another part-time job.
Over the years we have tried many things-- John did go to a social group with other teens with Aspergers a few years back, but it wasn't for him. Through it he did gain a friend. John told us he wanted to be in his own place by the time he was 25 but living by himself would be too lonely and too costly. Over the years I had been learning about lots of different living options. It became clear that John and his friend, with the support of both families, could likely be roommates. After lots of discussion and meetings we zeroed in on an apartment. John and his friend are now in their own apartment at Cherryhill...and got moved in two months ahead of schedule!
I am happy to say the apartment living is going remarkably well - scary though it was for all of the parents. It truly was a leap of faith but was done with lots of planning and investigating. Cherryhill is a very welcoming environment (and is only a 5 minute car ride from home). Three support workers all check in at various times through the week and help with independent living skills, mentoring and coaching. Both families have been very involved and the guys were really ready to live this dream so they are making sure it is working. It is definitely a work in progress but John informs me he'd like to live in Cherryhill forever.
Now we are working towards the dream of independent facilitation as the next critical piece of support needed so that John and his support system can have the life in community that he wants. Because we don't have an independent facilitator system as an option in our community I am that facilitator for John. Poor John is sick of his mum being the boss but what can we do? It would be very helpful for relationship building for John to have someone else facilitating for him.
I have great fears about the stability of these funds. I have great fears about the flexibility. John is doing great right now and may need less and less support but what happens if he is in crisis? We do need to have something in place for the future as we are all aging.
I am so thankful for what we have but because we don't have a system in place I do feel isolated and sometimes exhausted. All I can say is thank goodness for the families and support of individuals (as well as some financial backing) from several agencies in London to move ahead with pursuing independent facilitation in our area.
There has to be an ongoing process that needs to be available over the long haul for John and others like him to be: heard; supported to be included; participating; building relationships; taking the next step he identifies. "How John needs someone in his corner-an independent facilitator who he knows and trusts, someone he would want to get together with, and share ideas with.' That would ensure his voice is really heard and that he is connected with more than just his family. The difference would be that it would not be at the mercy of a service program - it would always be at the direction and of what fits for John.
