One out of every 166 school aged children in Saskatchewan has an autism spectrum disorder (ASD).
Daniel is 22 years old now, and our journey together has been filled with moments of joy and sadness, and of celebration and frustration. But it has always been held together by the love of a mother for her child. I always dreamed for Daniel as I have for my three other children; to have a happy and meaningful life in the community, filled with laughter, family, friends, a good education, employment, recreation, and most of all a home of his own. I have always known clearly what that dream was, but it has been a struggle and a long road to have those dreams come to life. At times I lost hope, faith, and even felt the need to compromise when I listened to others and not myself. I am saddened by that, but acknowledge that I grew tired. One thing constantly stayed the same though—through this all Daniel was resilient, patient and always trusting.
The journey to Daniel’s new home began several years ago when we recognized the need for him to grow as a person with the constant support and companionship of someone other than his Dad or I. We always knew this, but had very few options to pursue.
Daniel initially moved to Farm in the Dell; an option put forward by Community Living Service Delivery (CLSD). He shared this beautiful country setting outside Saskatoon with 9 others. Farm in the Dell is a good home, the support workers are caring and kind, and Daniel built relationships that have continued past his residency there. Despite all the efforts of Daniel, our family, and management and staff, we could not make this work. Daniel became very agitated and unhappy; so we all worked together as a team to understand why. Ultimately Daniel was released to our family home and we were very unsure what would happen next. Both Daniel’s Dad and I were forced to take a leave from our jobs to provide support for Daniel in our home. It was a stressful time because there appeared no end or solution on the horizon. I could always carry on when I could see a future or a solution, but during this period it really was just stress and existence. I hated it. Daniel hated it. Our whole family hated it, but we endured.
It was a coffee morning with my Mom and Dad that turned the page for our Daniel. I had been crying that morning and felt defeated as everything we were trying for Daniel ‘did not seem to fit.’ Daniel’s personality changed and he was not happy; I felt defeated by the whole process. My Mom said gently, “Daniel can be happy and you have always been able to dream this with him so go and make it happen—do what you do best –advocate for him.”
That next morning, after a lengthy discussion with our whole family, I started to put into place the plan I always knew was the best. I contacted Nicholas Fraser, Housing Initiatives and Research Coordinator at the SACL. We drafted a proposal for Daniel and a roommate. A home with appropriate supports –a home that suited him and where I could see the return of the ‘Daniel smile;’ something we had so missed. We put this proposal forward to CLSD, but were turned down. I cried, took a breath and sat down with our family one more time.
We took a drastic step—we cashed in our savings, we searched the neighbourhood for a suitable residence, we phoned all the people who had built a relationship with Daniel and who knew how to support him well, and we hired them. We took out a 6 month lease on a duplex (two blocks from our home); in the neighbourhood that Daniel loved and was familiar with. We emptied our home of extra furniture and moved it to his home; we shopped at Value Village for the rest. Each step of the way Daniel made his own choices, he moved all of his belongings (generally making several walking trips each day) and we created “Danny’s House.” That’s what we called it—that’s what it is! We included in his support worker team, his older brother Adam and his sister Emily, along with three other individuals who believed in him and knew he could be successful. We ‘staffed’ this home 24 hours a day starting Sept 1st; promising to do this for 6 months. I took an unpaid leave from work to have the time to make this work. We spent a huge amount of money, but every penny was worth it. We looked at it as education money; I am sure that Daniel could have achieved a master’s degree on what was spent!
I fondly remember Daniel’s first night. He was supported by his worker Jenna (a friend, a mentor and a big believer in Danny). They had a fun night making supper together, watching a DVD, and just enjoying each other in Danny’s new home. Daniel had never managed a full night of sleep (even when medicated) during his other transitions, so we knew that it could prove challenging. I know I didn’t sleep that night wondering how he was doing. The plan was to drop him off at our home at 8:00 a.m. where I would support him during the day until he became familiar with his new home. I will never forget that morning—Jenna pulled up in her car, and Daniel and her jumped out – Jenna running across the lawn saying, “he slept all night—all night Lynn and no meds.” Daniel just smiled and smiled and smiled. I was so excited all day, so was Jenna, and we told everyone about his successful night that was willing to listen.
We repeated the next day and the next day and the next day—Daniel continued to sleep well, and in a few weeks began to be picked up and dropped off at his home, and not ours. His entire support team found ways to make each day successful—thanks to Adam for taking him to the local pub for beer and wings, and including Dad in this. Thanks to Adam for never ever giving up on him and for being the best brother he could have. Thanks to Linda for believing in Daniel, and keeping his evenings and mornings filled with singing and calmness. Thanks to Emily for encouraging Daniel to do more for himself, and for bringing her friends into his world and letting them become a part of Daniel’s circle; Emily you are a great sister. A huge thanks to Jenna who always believed in Daniel and celebrated every step of the way; she has become a part of the family.
During this time we continued to meet with CLSD. I sent them emails detailing what Daniel’s life looked like. I know that they could tell that he was doing well and he was happy. I was not sure where things would go, but I knew that they believed that this was a successful plan for Daniel. I invited Community Services Worker, Jennifer Boyle and Community Services Manager, Robert Clipperton to a meeting with Daniel in his home. Daniel proudly took them through his home, showing them his bedroom and his basement; smiling all the way. I hoped that if CLSD could see this success, we could work together to continue this plan.
We continued meeting until November 2012 when we were informed that CLSD had looked carefully at our proposal, and that they could contract Autism Treatment Services (ATS) to continue Daniel’s current plan. CLSD also agreed to support Daniel’s friend Jon to live with Daniel; this is what we had always dreamed and hoped for. The plan would be for Daniel and Jon to move into a new home built by ATS. We had initially hoped that they could remain in their current home, but regardless I know that Daniel and Jon have the appropriate supports. We met with ATS and I was happy to see that they saw Daniel’s and Jon’s home in the same way as we did. ATS are respectful and dedicated. They interviewed and hired all the support workers that were currently with Daniel, including Daniel’s brother Adam and his sister Emily; they realized the importance of making the transition as stress free as possible. We agreed to a takeover date of December 1, 2012. Daniel gave ATS a tour of his home—even sharing a sniff of his shampoo to the Executive Director Shannon Zook during the tour. This was a good indicator of Daniel’s acceptance. He felt that he was in control of where and how he lives, and he is happy. It is so wonderful to see how Daniel has so much pride in his home, and how he loves to share his home with others.
The story continues as new support workers have been added to his team—I welcome Chris and Ryan and thank them for bringing calmness and acceptance, and sharing this with Daniel. A big thanks to Chris for bringing in his guitar and making music with Daniel—I hear Daniel singing now, and it is wonderful to hear his voice. Daniel could not have a better circle of support around him.
Daniel’s roommate is now beginning his transition. Jon is eating suppers with Daniel. Daniel is joining Jon on his riding lessons. They are learning to share space. They are gaining independence each day. They are friends and roommates. They each have very different lives, and most importantly they are allowed the respect and dignity to live them – their way.
Daniel has everything in life I ever dreamed. A family, friends, a home, a community, appropriate supports, work, leisure and fun—a recipe with all the right ingredients for a wonderful life. A real life and a good life.
We are learning to live a new life too. It has brought new peace to ours. When you ask Daniel where his home is — he knows it isn’t with us, his Mom and Dad, but on his own in his community. He has never smiled so much—that’s the biggest change. That’s the way it should be for everyone. He is worth it. Always has been and always will be.
Welcome home Daniel. I love you son.