Are you a parent of a special needs child? Do you need advice or help in securing care, education or other resources? Author, mother and social activist Miriam Edelson was the Star's guest expert in today's online forum.
Edelson is the author of My Journey with Jake: A Memoir of Parenting and Disability, and Battle Cries: Justice for Kids with Special Needs.
Her son, Jake, was born in 1990 with lissencephaly, a serious and rare neurological disorder. He was given just a few years to live but, incredibly, lived to age 13 and even celebrated his bar mitzvah.
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Q: Miriam, our son has been diagnosed being on the spectrum. The waiting lists for services are outrageous. To do this privately will break the bank. What should we do? Although he is not severe, he does have issues. If your child has severe issues, they move them to the front of the line. What happens to the other children who still require services?
A: I understand just how frustrating this can be – you finally get some clarity about what is going on for your child, and then the necessary services aren’t immediately available – if at all. So few of us can bankroll the kinds of treatments that will most benefit our children.
Since we are engaged in a special kind of parenting, we need to develop strong advocacy skills. I would pull out all the stops: Call your municipal, school board and provincial parliament representatives; write them letters; insist on a meeting at their office; never take “no” for an answer; take your son with you. We are not just “cases” or “files” – our children and families have a right to these services and people in public office have to take responsibility for all their constitutents.
Contact the Autism Society of Ontario. It has developed a very effective lobby on behalf of families like yours. It will also provide you a way to meet other parents – by e-mail or telephone – so you can problem-solve jointly.
Q: How does a family with one special needs child find the balance between caring for and tending to that child's at times overwhelming needs, when there are other children in the home, plus a spouse to find time for? Were you able to overcome that?
A: I think this is one of the most challenging issues facing families with special needs kids. Here are a few of the examples I've come across that worked:
* One family found a "siblings" group at the facility through which their autistic child attended school. It was a tremendous support to the non-disabled kids in the family. They had a place to be with others who shared something unusual; their family experience was different than that of their school chums. We need to let school boards and care agencies know that this kind of service is worth funding.
* Another family was able to take advantage of publicly funded respite care from time to time; the child with special needs stayed overnight on occasional weekends, giving the rest of the family a chance to enjoy some less intense time together. I believe strongly that we have to lobby governments to provide more funding for this kind of respite care to support families facing these kinds of challenges.
In “Battle Cries: Justice for Kids with Special Needs” I included a series of narratives from different families across the country and one from a Canadian family living in Sweden. In each chapter, this question of relationships between sisters and brothers is explored. The stories are not sugar-coated and yet, what emerges is a great deal of hope.
Q: Why is it that the schools insist that autistic children move ahead with their class/group even though they are so far behind both socially as well as academically? What do you think of the move to integrate special needs children into "regular" classrooms?
A: In my research with the parents of children who have special needs, I found a wide variety of opinion. Some parents felt that their children did very well in an integrated classroom. Some also mentioned that there were tensions with parents of non-disabled children because teachers were unable to handle the spectrum of children's learning needs.
I also interviewed parents who were convinced that a special classroom or school worked better for their particular child. I conclude that we need to think about "inclusion" rather than the polar opposites of integration v. segregation. In a primary school in Newfoundland, for example, I met parents whose children attended daily a special classroom designed for those called “developmentally delayed.” Non-disabled children from Grades 4, 5 and 6 had regular contact with these kids, read them stories, played with them, and helped with their care as part of their own education. What a creative way to teach respect for "difference" and break down the fears so many of us carry!
I am convinced that not enough resources are devoted to the public school system to fund the teachers' assistants, speech therapists and other professionals who are needed to make the classroom the best it could be for all children. Recently, parents of children with autism have won an important court case in Ontario regarding the right of children over age 6 not to be cut off an effective behavioural therapy. Nonetheless, many children are languishing on waiting lists.
Q: How has having a special needs child changed your life?
A: For me, it has been a very enriching experience and, also, very challenging at an emotional level. I think that when we learn to open our hearts to one child who is "different" it becomes easier to see that "normal" is not a very useful concept. Accepting the child (or adult) as a person, first and foremost, rather than seeing only a disabling condition, marks a significant step forward for parents.
In my book “My Journey with Jake: A Memoir of Parenting and Disability” I chronicled the path I found myself on after giving birth to a beautiful baby boy who had profound disabilities. It’s a very demanding journey, but one I would never trade now. I am a more compassionate person now and far less judgmental of people - we have different needs and abilities, and as human beings we all deserve the best our society and communities can offer.
Q: Ms. Edelson, I am the frustrated mother of an 8-year-old ODD girl. She is bright, articulate and charismatic, but her behavioral issues have eclipsed all her wonderful qualities. She has been to four different schools since JK and I am currently considering removing her for her present placement within the public school system. It is a very small class with a jarring mixture of pupils that do not mesh. Her demeanor has deteriorated in the eight weeks since I enrolled her there.
For Grade 4, in the fall, private school seems to be my only option with a behavioral focus being mandatory. In the meantime I am contemplating homeschooling her for the remainder of the school year. My questions are, firstly do you recommend any Toronto private schools specialized in dealing with ODD? Secondly what are your thoughts about homeschooling her at this point?
I am not certain if my queries fall within the parameters of your forum, but I thought it was worth a try. Many thanks.
A: Trying to find a best-case schooling option for a child and family living with Oppositional Defiance Disorder seems to be quite a challenge. You have clearly devoted a great deal of effort and determination to find an appropriate setting.
While I am not familiar with private schools that specialize in this field, let me pose a few questions that might assist in your decision-making. Are you in contact with the medical facility that provided you with your daughter’s diagnosis? Is there someone there who can make an informed recommendation? Staff at the Bloorview Macmillan Centre in Toronto may be able to guide you to other community resources. Another website that may be helpful, in a general way, is www.conductdisorders.com
Homeschooling, especially if you are concerned that her needs are not well-served at present, is an option some families consider. I would be mindful, as I’m sure you are, that education is so much more than learning a specific curriculum. Homeschooling may be a short-term solution while you investigate other options. Can you build in other activities such as soccer or swim lessons that would ensure your daughter is also in contact with other children her age?
Finally, if you do go this route, make sure you also build in some time for yourself - in such intense parenting situations, we all need regular breaks to keep ourselves at our best. Further information and ideas may be found at an on-line parent discussion group found at www.groups.yahoo.com/group/homeschool_specialneedskidz
Q: I watch my sister and her son, who is physically and mentally challenged, and she is so depressed. I don't really know how to help her. Do you have any ideas you could help me with? Thank you.
A: It is hard to see someone close to you so distressed. Sometimes the best thing you can offer is yourself - just to listen or even better, give her a chance to get away (even briefly!) from a very challenging situation. I have found that when mothers can expect time away away from such intense parenting responsibilities on a regular basis, it can help a great deal. Could you care for nephew from time to time and, perhaps, find a friend or family member who might also volunteer?
You might also explore with your sister the idea of joining a support group in-person or on-line. Can you do some background research and offer that to her so she may consider it? Often a person who is stretched has little extra time or energy to find support for themselves. The web is a terrific resource - if you “Google” children with special needs or your nephew’s specific diagnosis, you’ll find a wealth of information and peer support.