Parenting a Child With Special Needs
Keeping your Dreams Alive - Imagining what Some Think is Unimaginable.

By: Susan Beayni
June 2007

As a parent of a 24 year old daughter, named Rebecca, who has special needs, I realize the shock and the shift in thinking that comes for a parent with the initial diagnosis of disability.  The fact that your darling newborn is not the person you expected requires some readjustment but perhaps the most difficult thing to cope with is the reaction of friends, family, acquaintances and society as a whole.  Many feel uncomfortable, not knowing what to say and therefore stay away altogether.  Others, with good intent, give lots of advice on how to make your child as normal as possible.  Then there are others who look at you with a long face as if they were at a funeral.  All this time your mind is swirling with questions, fear for the future and above all, a deep and  protective love for this new being that has joined the family.

For the first few years, the parents and child are frequently involved with the medical system, with appointments, therapies and advice as to how to assist their child in being the best they can be.  Rarely is there any time to just be together in a normal parent/child relationship.  The parents find themselves  in the role of caregiver, therapist, teacher, case manager, advocate, an expert in crisis management while juggling all the other balls that are required to keep a family healthy. 

As the child grows older and the disability often becomes more obvious, the family comes more in contact with cultural attitudes and value systems in society, which don’t necessarily benefit their child who may seem different.  We, in North America, live in a society which idolizes perfect bodies, perfect minds, independence and speed i.e. doing things as fast as possible. We, as parents wonder how such a society will ever see our beautiful child as a gift with a contribution to be made to the community which is welcomed and valued.  We also wonder how they will get the supports they need to be active participants when they are in competition with many other groups and systems looking for government funds.  Rebecca, who has cerebral palsy, cannot speak and uses a wheelchair, requires a considerable amount of care. This requires a fair amount of energy on our part, but nothing compared to the energy that is required to try to teach the world a different and more inclusive way of thinking.

It is easy to see why it is a challenge for parents to keep the dreams for their child alive when they are surrounded with messages of low expectations and even the pain of knowing that generally speaking, in our society, individuals with disabilities are not valued in the same way as others.

As a Family Facilitor at Bloorview Kids Rehab and as a member of a local and provincial networking group called Family Alliance Ontario and the Ubuntu Initiative, I have found that the most supportive ways of keeping the dreams for my daughter and others like her alive, are through networking with other like-minded parents and hearing their stories. Some of the strategies that have been successful for families to be supported in this way are to

• Gather a circle of friends (not people who are paid to be with the individual) who love your child and want to be involved in making sure that  they have a valued presence in the community.  The circle meets regularly and acts as cheerleaders, solution generators, connectors, planners and hand holders. The circle provides support to all family members and to each other.
• Dream about your child’s future. Brainstorm what they would like their future to look like and also what would be their greatest nightmare.
• Develop a Vision 
• Plan  With the help of the support circle and using tools that are available ( check out www.inclusion.com) strategize ways of enabling the dream to come true
• Identify the gifts of your child 
• Be clear on what you need
• Find ways to articulate your vision
• Think outside the box
• Connect with friends who have the same values.  They will help you remain energized as you bring a counter cultural message to the world around you.

By doing this, Rebecca’s life has been very rich, filled with meaningful relationships with friends who love her and support her in her dream to change the world to be a more compassionate, loving place.  Rebecca’s school and later work experience is a testament to how one person can change the entire culture that exists around them. Teachers, administrators, fellow students, and co-workers always say that Rebecca’s mere presence changes the very fabric of their relationships, making them more collaborative, more compassionate, and more intuitive to strategies that advantage all persons.

Rebecca was fully included and integrated into the regular classroom since elementary school and she has had wonderful teachers who planned creatively and effectively to cater to her learning needs. Part of this was having Rebecca’s classmates play critical roles in assisting her and helping her teachers to create accommodations that would be to her benefit as well. Not only did these youngsters learn the importance of responsibility for others, task commitment and community building, they also gained from an educational perspective as well; since teaching strategies used to assist Rebecca helped all levels of learners. I remember when Rebecca was in the eighth grade, she was out in the school yard and some of the boys in her class were “skipping” with her. She has always loved to watch children skip so her classmates, when they were younger figured that she could skip too if they just turned the ropes back and forth over her head as she sat in her wheel chair. It was amazing to see that even in grade 8 when 14 year old boys are trying to assert themselves in the stereotypical ways of young men, that they exhibited such tenderness towards their friend’s desire to play with them.

Rebecca continues to disseminate citizenship education in her pursuits as an adult. She has an extremely vigorous calendar of commitments. On Mondays she supports preschoolers in a daycare at Rosalie Hall, a resource centre for young mothers. Not only does Rebecca bring her gifts of dance and love of music to the children, she also is a visible example of the dignity and value of all life to the young mothers, who themselves feel isolated at times. Rebecca is also a facilitator at the Royal Ontario Museum in the Bio-Diversity Hands-On exhibit, helping people discover things that they might otherwise not notice. My daughter also brings hope and inspires the vulnerable and dispossessed through her own vulnerability, when she volunteers at the Mustard Seed drop-in center with its community kitchen, library, sewing room, etc. Most inspiring to many, is the fact that Rebecca is a dancer. She dances with the Spirit Movers liturgical dance group and testifies to her strong faith using this medium. How does a person who is non-verbal and wheel chair bound living within the constraints of others ideas and expectations of people with disabilities do all these things? Her success in overcoming obstacles is mainly due to the deep and committed relationships she has developed with family, friends, her support circle as well as collaboration with community groups that she comes in contact with regularly such as the church, schools and other venues.  Her support circle, who have been meeting regularly for the past 13 years, help interpret her goals and dreams.  Rebecca does not speak, so those around her ensure that she has many other ways to express her feelings and desires. It is imperative that she have long term relationships, both paid and unpaid who can help build the capacity of the community to welcome her gifts.  In return Rebecca helps them create a better world for all. This is citizenship, and Rebecca is an esteemed educator in this regard. 

Rebecca’s story as told in a short video called “Revel in the Light” and her website www.rebeccabeayni.com  help families realize the power of keeping the dreams for their sons and daughters alive not only for them but also for a world which needs to hear all voices in order to make a paradigm shift in thinking and realize that a good society is created when the gifts of all are recognized and welcomed.