The Alberta Family and Disabilities Study Initiative

I was not surprised to read that over 70% of parents-carers said their family unit has emerged stronger. Almost all of the families said that having a child with a disability brought wonderful people into their lives. The experience has also taught them what is important in life. Over 50% said they laugh more and are less bothered by trivial things.

Families were most challenged in the area of work and family (often true for any family). Many felt their life was revolving around the child with the disability and their other children were missing out. In some ways, I feel lucky to have two children with autism and no neurotypical children because I doubt the neurotypical child would get much attention in our family.

Parents-carers said they had to give up more of their life than they expected. Some felt trapped and almost a third said their hopes and dreams are now out of reach. I used to feel like that in the early days of parenting, but I found the key to feeling more balanced was adjusting my expectations and designing new goals that fit within my present lifestyle. Smaller, short-term goals are more manageable but I still plan longer goals with the understanding that they may undergo adjustments.

Three out of four families said they had to carry out prescribed activities or exercises at home to help their child’s learning and development. Of these families, 94% experienced difficulty finding a slot in their daily routine to do the activities. Families spend 10.5 hours per week implementing home therapy programs in additions to attending appointments with various professionals. This I feel is one of the biggest challenges that set the disability parenting community apart from parents who don’t have a child with a disability.

I was pleased to see that financial concerns were explored in this survey. Over half of the families reported difficulties with paying their bills over the past 3 months. Twenty percent expected that they would have to go without basic things over the next 3 months. The cost of caring for a child with a disability is considerably more than a neurotypical child and usually one or both parents have to make adjustments in their work situation in order to care for their child. I am so grateful to be able to work from home; going outside of the home to a job every day is not an option with two children with autism.

The other side of the work dilemma is finding appropriate and inexpensive childcare. Most of my friends are surprised to hear I have to pay a babysitter $20 an hour to look after two children with autism. When I was paying less, I often couldn’t get quality people. Using high school students is generally out of the question due to the level of responsibility of the job. My friends who have teenagers leave them alone for a few hours; I can’t do this. I will be paying for childcare for many years to come. It’s a strange thought to get my head around because when I was 13 (the same age my son is now), I already was babysitting and working part-time at the public library.

There were very few two-parent families where both parents worked full-time and contributed equally to care work (9%). Two-parent families where the mother worked full time and did the majority of the childcare made up for 22%. This was also the same percentage for single-parent families. I thought the number would be higher based on what you read about the divorce rate and disabilities. 41% were two-parent families in traditional roles of the father as wage earner and mother as carer.

What fascinated me the most about this survey was what people did to keep their family life running. Here were some of the findings:

82% – Reduced participation in sports and leisure
61% – Called on extended family for support
55% – Called on friends for support
49% – Decided to have fewer children
42% – Quit work altogether
36% – Turned down a promotion or a job
29% – Became self-employed
28% – Hired a nanny or a housekeeper
25% – Moved to be closer to support

What I found comforting in reading the results of this survey was that I am not in alone in what I am finding challenging to keep our family thriving, not just surviving. The majority of families who completed this survey had a child with an intellectual disability or autism. Raising a child with a disability can be quite isolating. I am finding this increasingly so as the gap between my children and their peers continues to widen. Although they are gaining some independence, it is at a much slower rate than their age group.

I try to do my best and “just get on with it” but it is comforting to know that other families have had to make similar adjustments. The Family and Disabilities Studies Initiative has created a Sustainable Family Care Forum for families of children with disabilities (including adult children). You can enter into an open discussion about parenting demands, employment, dealing with the government and private support agencies, and other challenges. Sometimes entering into a discussion with other people in your situation can be beneficial. We all need a place to vent too!