CityNews Exclusive: A Mother Reveals What Having An Autistic Child Does To A Family

Autism. It’s not a big word but it represents big problems. Autistic children can’t relate to society or communicate properly, leaving them unprepared for a world where all such social interaction and networking seems to whiz by at the speed of light.

For the families of these loving but troubled kids, it’s a nightmare that’s emotionally draining, spiritually difficult and financially impossible. Here, in a CityNews.ca exclusive, is the story of one mother living this existence, an articulate and sensitive woman trying to put into words what her own child may never be able to express.

My name is Nancy Morrison and I am the parent of 9-year-old twins. One of my twins was diagnosed with autism when he was just 3 years old.

Autism not only affects the child, it affects the entire family. The continual challenge to your patience is extremely hard to deal with. We are fortunate that our son makes it through the night sleeping – many others don’t. But our son wakes us to screams and temper tantrums at 6:15 to 6:30 every day. You have no chance to get any rest past that time of the morning.

Once our son is settled with breakfast, and dressed for the day, things usually settle somewhat, as long as he is constantly engaged in activities to keep him occupied. If not, we all suffer the consequences. Children with autism cannot “do” downtime.  They are often runners. If you go into any home of an ASD child, you will see locks lining all the doors and windows.

When out in public, a person with autism is often overwhelmed with all the sensory issues they experience. The lighting in most stores is hard on them, the noises are coming at them all garbled and confusing, and you will often see a child with autism unable to handle all the sensory input and end up in a meltdown. This can be anything from yelling and screaming, dropping to the ground and rolling, or running away. 

Too often we have had people comment on our son’s behaviours, not understanding why he is having such a difficult time. So not only are you trying to help your child, you are then left to enlighten those around you as to why your child is behaving the way they are, or hold your head high and move on as you are brought to tears from the hurtful comments and stares.

Then there are the financial hardships that autism brings to a family. Wait lists for funding for interventions (IBI/ABA) and respite are years long. Yet all the experts tell us that the earlier you can offer interventions, the better outcome your child will have. So most families do whatever they have to in order to afford hiring ABA therapists.

We have had to re-mortgage our home 5 times in the past 6 years in order to pay for the expenses that autism has brought us. Our personal expenditures are now over $120,000.  Thankfully, we now receive partial funding for ABA, but that could be pulled away from us at any time; a stress that is just too much for anyone.

If your ASD child is doing well in IBI/ABA, then the funding is taken away, and children regress without this much-needed intervention. If your child is not doing well enough, the funding is taken away, your child deemed a write-off.  It’s torture to live with this type of threat dangling over your family finances.

Families are left with a choice – to go into extreme debt or to write your child off. No parent can do that, or should ever be expected to do that.  When you see an intervention that is effective in over 95 per cent of children, with over 45 per cent being able to function typically in a classroom, you do whatever it takes to provide that to your child. The alternative is unthinkable. 

When a child enters school, then more problems and stressors enter into the picture. Schools are ill equipped to handle children with autism, and with the alarming rate of 1 in 150 children now being diagnosed, most every school in this province have one or more children with autism now.

Minimal training of two days of an ‘intro to autism’ and ABA interventions are now offered to less than 4 per cent of educators. Parents and IBI/ABA professionals face a systematic discrimination when trying to guide educators in working with our kids; the professionals are not allowed into the schools. So many families with autism end up fighting with administrators, teachers and EA’s, not out of choice but out of need to see their children get an education. 

My son has his personal struggles, trying to navigate our world, when his ability to communicate with us, understand social situations and behaviours all challenge him. He desperately wants to have friends call on him or ask him over for play dates, but due to his challenges this has never been a joy he experiences.

When his sister has a play date, we are left to pick up the pieces with our ASD son and his hurt feelings. His sister is left feeling guilty that she has friends and an active social life.

Dealing with the demands of an ASD child, along with the long hours we all have to work to make enough money to pay for the expenses, leave most parents suffering from extreme exhaustion. Lobbying with our politicians for improvements to funding and services, with our school staff and administrators to make sure our kids are safe at school and receive an education, takes it toll. All this stress and exhaustion leaves no energy left for keeping a marriage happy. Statistics show that marriages where there is a child with an ASD are ending in divorce at the alarming rate of 80-90 per cent.

It is also difficult for parents to accept that their children, who for the first few years of life seemed healthy and typical, regress into a world of their own. Parents always hold high hopes for their children’s successes in life. When you have a child with autism, your hopes change to ensuring your child ends up able to contribute to society instead of being a burden to society for the rest of their lives.

The future for our children with autism is bleak. What will happen to our children when we are gone or no longer able to care for them?  Adult assisted housing has waiting lists years long, and only about 10 per cent of adults needing assisted living is able to find it. Financial aids for those unable to work ensure our children will live below the poverty line for the rest of their lives. But the expenses now leave little opportunity for families to take on any financial planning for their future.

Extended family and friends also have a hard time dealing with the challenges a child with autism brings. Our families are often left feeling lonely and abandoned with little assistance to help them along the journey of raising a child with autism. This feeling of isolation and abandonment can bring parents to a breaking point.

I can fully understand why Stefan Mariniou was brought to a point of doing his hunger strike. His strike is not just to get some help for his 15-year-old son. It is being done to ensure other families don’t suffer like his has been suffering. It’s a desperate move, and a very sad day when someone has to risk their health and lives to ensure their family is taken care of in our society.  

My daughter met Stefan last Friday evening, and she told me when we left that she has a new hero in her life.

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