Colleen Cunningham, a mother in Sarnia, is facing my greatest fear. Her son Nathan, now 21, has cerebral palsy and has severe disability. He requires 24 hour care. You can read more about her story here.
Based on what I can glean from this article, Colleen is alone, aging, and her own health is failing. Her son will never be independent. But there is no room for him in a group home. Colleen's desperate solution is to abandon him in respite care, forcing the government to intervene in his care.
My heart aches for this mother. No one wants to abandon their children, and the irony is that Nathan could probably remain at home if Mom had some supports, but there is "no money" in agency budgets. Other support services in Ontario, such as "Special Services at Home", have been frozen since 2007 or earlier. You can apply for such services and be awarded money, but you are wait listed. As families give up their funding, the funding is clawed back by the government. Why we are paying bureaucrats to collect names and determine pretend grant amounts while people with disabilities get no support is beyond me.
Do you have children with disabilities? This could be you someday.
Children with severe autism are transitioned into a school system that is not designed for their needs, and inclusion zealots are happy we do this. Inclusion is cheaper and better for the child, according to them.
Here is the harsh reality for many children with severe autism. While they are included in classrooms, they may, if they are lucky, meet some children in schools who are willing to be their "friends". I don't discount how happy this will make some parents, including me. But at age 21, those elementary school friends are long gone and are probably replaced by support workers. Inclusion is a happy place for the time, but that friendship is temporary and does not help the child gain long-term skills needed for independent living. My own daughter A has friends close to her age, but it is not an even relationship. It takes a special person to be friends with A, and as A ages and becomes developmentally further behind (at least socially), these special people will become harder to find.
School is a place for academic learning and socialization. Yet very few schools have any formal teaching for socialization because the vast majority of children come to school with basic skills and learn the ropes as they go. For many kids with autism, academic skills beyond literacy, writing and numeracy are not very important. Life skills, or adaptive skills, are much more important. I would rather spend a day teaching A how to use a public washroom then say teaching her about native Canadian villages. But schools aren't designed to teach kids about using public washrooms, because most children don't need special training to learn this skill.
Parents, ask yourselves - when school is done at 21, are you comfortable knowing your child learned all they could to be as independent as possible? If not, in my opinion, time was wasted. Because in the end, the responsibility for the child falls back to you. There is no schooling after age 21 in most jurisdictions, and in Ontario at least, getting into a group home is no easy task.
I admire parents who say they "accept the autism" and "just enjoy their children". I think sometimes parents need to let kids be kids, disability or not. But we also have a duty to our children, and for our own sanity, to prepare our children to be independent. To me, that means making the most of every opportunity, and it means the public school system is no place for A.
Early intervention is touted as a way to save money by "teaching children how to learn" and allowing them to achieve "average functioning". Yet very few children do so. In Ontario's IBI program, the proportion of children meeting average functioning is only 11% of discharges. There are also no studies indicating if children in this program retain their level of functioning after they enter the school system. In other words, IBI gets them to a certain level of functioning, but we don't know if they can maintain that level once the intensive supports are removed in a school setting.
I don't want Colleen's story to be mine in 16 or so years from now. Do you?
Inclusion is no solution - children need life skill teaching from discharge. It's too bad Ontario's public education model will never put the individual's needs beyond that of its employees. Shame on us for letting it happen.
Don't you think that the reason the IBI therapy success rates are so low here as generally the long waiting time means children don't get timely care here compared to some US states .... I am an autism mom too in Ontario 2 1/2 years on the waiting list and still in the high 200's - almost two years to get a diagnosis
ReplyDeleteif my son had been in Minnesota where by brother teaches he would have been diagnosed and in IBI at 3 and within 3 months waiting time max - so much for our great health care system
The private school and IBI I as a single mom have had to pay out of my pocket have helped him a lot I sadly can only imagine what 25 hours a week vs the 4 hours I could afford would have done for him
I agree that life skills and adaptive skills are the most important focus and that most school programs are ill-equiped to do this. And certainly there needs to be a lot of work in that area. But in this world of therapy for our kids, many many parents have turned a blind eye to one very powerful resource. A resource that teaches these skills to our typical children.
ReplyDeleteMany engaged parents have been trained in ABA or RDI and know how to teach our Autistic children. So why do we think that the school should teach our Autistic children to do the laundry? I taught my typical child to do this in a couple sessions. But for my severely autistic son, it took a long time. He's been doing laundry with me since age 8. I took it step by step. He can now fold each piece of laundry independently. We still need to work on running the machines.
"Oh", the overworked stressed-out parent of an Autistic child says, "I can't do that, I'm just too busy and stressed out." Well someone in the house does laundry.... so you just include the child in that activity. And it takes a long time. But just cause our kids are hard to teach, does that mean that we shouldn't be part of the team that teaches them? btw, laundry is just an example.... and I'm not saying we should be the sole teachers of our children. I'm saying that we need to up our own expectations of our kids and be part of the solution.
Jill, I do not disagree with your sentiment. Parents are the first teachers of their children. But it is exhausting using every moment of every day to teach a child with severe autism.
DeleteTo take your example of laundry... to teach A this would involve breaking it down into very small steps and chaining the learning. My wife would typically do this - and it would take her a long time, since to start, so much would be prompted.
We certainly use moments of every day to teach. The other day A was interested in the dishes, so she helped us by taking the items in the rinsed sink and putting it on the drying rack. But this is so incidental. Trying to focus her on learning for a majority of her day is exhausting. There is a reason why therapists have short periods of work, because by the time they are done, they are tired!
There are many good special education teachers. But there are also many classes where very little true learning occurs, and if ABA were used properly, learning would occur much faster.
As for RDI, I don't even really get RDI, so I doubt many teachers would either... it really takes someone good at incidental teaching to work RDI principles.
Still, I get your point. I read a great book a while back on teaching self-help skills, and the best advice it gave me was that taking an extra few minutes each day to try to teach the skill vs. doing it for them because it is easier pays off in the long run... and they were right about that! Thanks for writing!