Better Days Ahead

By Darlene MacDonald

Imagine that your every waking hour is consumed with the care and management of one person in your home. Further imagine that this person is so volatile that his siblings and parents feel verbally and emotionally abused, develop stress-related health problems, and frequently collapse in tears of frustration. Suppose that person is an 11-year-old boy whose family loves and adores him, but after years of trying to cope are completely drained.

This is a bleak scenario, but it was a reality for my family. Our identical twin sons, Taylor and Aaron, are developmentally delayed. This plus other issues have made intensive support and services necessary since they were born. For many years, dedicated health care professionals worked to develop the best combination of therapy and medication to address their multiple disabilities. Aaron responded well, but Taylor continued to struggle. With constant supervision and monitoring, he was manageable as a toddler, but as he became older his aggression, anxiety, anti-social behaviour and obsessive compulsiveness made it virtually impossible for him to function in any capacity of his life. His school placement, activities and home life were in jeopardy as he became a danger to himself and others.

After two in-patient psychiatric assessments at the local children’s hospital, Taylor’s doctor suggested that he would benefit from a living arrangement more highly structured than was possible in our home. Initially we refused. We believed Taylor belonged with us and that the best place for him was with his family. Accepting the proposal would mean we had failed our son.

The health care providers continued to encourage us, however, pointing out that we must also consider the health and well-being of each individual in the family. I was torn, but I also knew we couldn’t go on this way.

We were introduced to Shelley-Anne Steinburg, director of Main Street Community Services in Ottawa. Among its many programs for people with disabilities, this not-for-profit charitable organization supports two therapeutic respite homes. Located in a quiet suburban neighbourhood, Main Street is home to children for three months at a time based on the guidelines for respite care. Residents must return home for 24 hours before they begin the next three-month period, but the ultimate goal is reintegration into the home. A longer-term residential facility would be considered a more permanent placement.

A therapeutic respite home accomplishes two goals. First, it creates an individually tailored environment in which a child with multiple disabilities and complex needs can learn the necessary skills to help manage his disabilities with the objective of returning home. Second, it prevents family burnout from the demands of full-time care. When Steinburg described her multi-method approach, her strategies and personal philosophy to us, we knew this was the best option for Taylor. With a strong clinical staff, a plan of care and a set of long- and short-term goals in place, Taylor became a resident at Main Street.

When Steinburg hears parents in our situation use the words “guilt” and “failure,” she says they are normal feelings, but they are misplaced. She has told parents, “Your child has needs that may not be being met in the best way they could be. If anything, you should be proud of yourselves for asking for support. We have to stop believing it’s our responsibility to do it alone. After all, it’s about doing what’s in the best interest of your family and your child.”

Main Street staff have the same passion and innovative approach as Steinburg toward each young client. By actively supporting both the family and child, she believes that relationships can be maintained, parents can be empowered and the child will ultimately benefit.

Taylor’s days are highly structured. The school he attends is a children’s hospital-affiliated day treatment program called Steps to Success. He is learning life skills, strategies to cope with his disabilities and some academics. After school, Taylor returns to a program also run by Main Street, then goes to the residence before dinner. His schedule there is designed for his particular needs. The ratio is two children for every staff member.

In the summer, Taylor follows the same schedule in residence, but rather than school, he attends Main Street’s social skills day camp, which is specifically designed for children to work on life skills, personal development and social behaviour.

Full family involvement is encouraged and supported. Steinburg makes herself available for advice, planning and daily updates. We have access to Taylor anytime and he regularly comes home for visits, family activities and outings. We also telephone back and forth regularly. The quality of our interactions has dramatically improved, as he is learning to self-regulate his behaviours and we are learning, with Steinburg’s guidance, how to implement the therapeutic approach in parenting.

Equally important for this process to be successful is that we, as a family, have had time to heal and rejuvenate. We did not fully realize that the “pressure cooker” environment we were living in had fostered a toxic atmosphere. We are stronger, happier, more confident and more relaxed than we remember being in a very long time. Our teenagers feel comfortable enough to bring friends home again, our family time is more enjoyable and we are able to really enjoy Taylor rather than struggle just to manage him. We are confident that the work undertaken by Steinburg and Main Street will ultimately lead to bringing Taylor home for good and our family will be reunited.

We are all working toward reintegrating Taylor into our home. The process is slow and the cost can be very high — therapeutic respite homes with a low children-to-staff ratio can cost $250 a day or more. Funding is limited and varies by province and municipality of residence.

Taylor’s behaviour was, in large measure, the cause of the stressful and negative atmosphere in our home. With his stay at Main Street, he has gone from no successes in his life to baby steps on a more encouraging path. We are seeing measureable improvements. He smiles, expresses affection and emotions and has even managed a few large family gatherings with fewer incidents. It turns out that we had to send our son away in order for all of us to be a family again.

Darlene Macdonald lives in Kanata, Ont. For information about therapeutic respite homes, visit Service Canada at www.servicecanada.ca. For more articles about family life and parenting, please visit www.abilities.ca.