Sad But True: Parents of Special Needs Children Have To Do More.

Coming from previous work as a Social Worker with two agencies serving children and youth, what I can tell you is that the majority of time, counselling, coaching, and training, involves working with parents more than it does the children.  

When you really think about it, a coach, therapist, counsellor, trainer, or teacher, only has the child for a fraction of time, compared to the amount of time the parents spend with the children.  Most of the child’s learning and growth will occur inside of the home environment.  In reality, fundamental change has to be developed and supported in the home ecosystem, or it will not take root.  Many parents just hand their kids off to therapists with the attitude of “here they are, fix them”.  But, in reality, the “fixing” is not with the kids the majority of time - it’s with the family system.  Most parents do not want to hear that. They are often frustrated, overwhelmed, busy, and are trying to manage the rest of their own lives and the rest of the family.  Now, there is some truth in that changes in one part of a family structure will cause change in the rest of the family structure, this is not the main point I am trying to make.

Ok, so where am I going with all this?  To give the post some more context, I am a parent of a youth with special needs.  I am a Social Worker and a personal trainer as well.  I have seen the positive and negative sides of the education system, as well as social service system - and full disclosure, I have also worked within this system, so I can see it from the inside and outside perspectives.  As a little more background, as of the time of the post, I want to highlight some current problems that Canadians, more specifically, Ontarians are facing:

• Many people are without access to family doctors.  Family doctors are often the first step in getting a referral for psychological testing for mental health and developmental disabilities, such as Autism.

• Once diagnosed, there are long wait lists for services in both the mental health and developmental disability sectors.

• If your child is a candidate for government funded developmental services - and yes, they have to meet a criteria/threshold, as a simple diagnosis is not sufficient enough for service entry (especially for IBI services for Autism) - the services are time limited.  Once the time limit has been reached (i.e. either amount of time in treatment and/or maximal treatment effect has been reached), any further services are directly funded out of pocket by parents.

• School systems are underfunded, understaffed, and are some are running on a deficit budget.  This has a ripple effect for all students, but perhaps, especially students with special needs.

• Adult sector service access also requires further psychological testing and an application, and once accepted, these services often have extremely long wait lists.

• People in general can be waiting up to 10-15 years for access to social housing (in Windsor Ontario), and people waiting for Community Living assisted living homes can be waiting for decades.  Also, each person has to be assessed as a suitable candidate for any vacant openings in assisted livings homes that become available - so even placement on the waitlist is not enough to guarantee a spot in a vacant unit.

• People with special needs can work, but are often faced with various barriers (both personal and systemic) that prevent them from often working full-time hours.

• Social welfare (in Ontario) is not enough to sustain life on - the maximum allotment of welfare for a single individual is not even enough to pay for basic rent, let alone food, clothing, utilities, and toiletries.

When you look at this picture, you realize that many youth and adults with special needs often don’t get access to the services they need to provide them with the ability to fully realize their potentials, as well as to maintain life at a basic level in a Western society.

This list may seem pessimistic, but in reality it is a very realistic picture of what is transpiring in our world today.  The sad fact is that many parents are unaware of the current political and economic landscape, and are shocked when they find out these facts.  Unfortunately, parents will wait until the last minute to access services, just figuring that when they need them, the services will be there for their loved one - and the reality is a stark contrast to this.  Now, this is not a post to advocate for improvement in the public social service, health, and education systems - yes, that is needed, but it is not the primary purpose of this article.  It seems that at every turn, our children with special needs are let down in our society - especially by the social safety net, service, and educational systems.  At the very crux of this is my main argument - when you cannot rely on government services for support when you need it, where you need it, what are you to do?  To me, the only logical answer is for parents to take on the lions share of responsibility yourself.  It’s sad, but very true.  If you want your child, youth, or adult child with special needs to maximize their potentials, you need to pick up the reigns as a parent.  Most parents are aware of the need for advocating for their child, but what I mean is that they also have to be willing to go further - to provide services, treatments, and education to their children - to actively pick up, where the social service system drops off.

I know many parents are overwhelmed and taxed already, and this seems like a daunting challenge, but it may be the only alternative to make sure that our children have the most optimal prognosis and success in life - no matter what their ability or disability.  Realistically, most lessons in life can be taught through the home anyways - whether its activities of daily living, banking and finances, social skills, physical education, etc.  The school system is really only a microcosm, or even practice arena, for the real world that exists once the bell rings at the end of the school day.  For any student, the goal would be to teach them enough to be able to apply, experiment, and extrapolate beyond what they learned in the classroom - to give them the tools to learn and grow.  From my perspective, I cannot see why parents would not be able to provide these lessons to their special needs children.  Disclaimer:  this is also not an article about promoting home schooling.  My thesis is just this - our current public education system is letting down our kids with special needs, and parents should be able to pick up the reigns once the school bell rings at the end of the day.  We shouldn’t blindly put our trust in the school system to fully equip our kids for all the skills they will need once they graduate to survive in the world, nor should we have faith that adult sector services will be there immediately when our children need them.  We have to bridge that gap and pick up the slack, if not for anything, but to give our children the most advantageous chance at living a fulfilled and independent life as possible.

Now this approach doesn’t have to be overly difficult.  It can simply be involving your child in more aspects of adulting, and letting them learn.  For example, anything from having them assist you with household chores, assisting with meal planning and grocery shopping, assisting with checking price and completing sales at stores; basically whatever you would do on your own to run your household, you can involve your child.  Yes, it may mean you have to go slower - sometimes it’s easier to do it yourself as you’re faster at it - but the dividends it will pay off for your child in the long term are priceless.  The other additional benefit of this approach is spending quality time together - most kids with special needs do get neglected, as do most kids - the parents are doing their own thing, the children in the house are doing their own thing, everyone's just trying to function and survive.  But, this can be a chance to connect with your children.  The other thing this provides is an opportunity to practice teamwork and social skills - they will have to listen to you, follow your directions, etc.  This is an opportunity for them, if applied correctly, that can not only help them function independently in the long run, but also provide them with building blocks to enter the workforce, as these will be needed skills.  My main point is that you can weave educational material about life into almost anything you do outside of the school classroom.  For parents of children with Autism, this approach is based loosely on Pivotal Response Training (PRT) - in a nut shell, you can engage an individual to increase their output in other domains by engaging them with a preferred activity first, and build all subsequent learning off that building block.  For example, if your child is extremely interested in sharks, you can use that to teach them about biology, geography, weather, ecosystems, safety, etc.  And, you’re also promoting a social connection with them as you do this.  Use what they are interested in, to build knowledge in other areas.  I only mention this approach, again, not to advocate for home schooling, but because it can be used across a wide variety of areas and in a wide variety of circumstances.  I even use this approach with my own child in a wide variety of arenas.  

I wouldn’t be a good Social Worker or personal trainer if I didn’t mention physical fitness as something you can do with your child to prepare them for the future.  While, I could probably write a second blog about the shortcomings of the P.E. programming in the school system for kids with disabilities, I’m going to focus here on some of the benefits of engaging in physical activity with your special needs child. Most obvious to anyone is that exercise makes you healthier and reduces likelihood of chronic disease, so I won’t focus on that - we are all bombarded with messages on this every day.  But, did you know that exercise can do the following for your child with special needs:  improve memory and cognitive ability, assist with learning, help with emotional regulation, improve balance and coordination, as well provide an outlet to practice social skills.  Not only that, but it also builds the functional capacity to perform activities of daily living.  I’m a firm advocate that exercise is one of THE BEST therapies for people with special needs.  But, it’s also something parents can do with their children outside of the school setting - and another bonus is that it can increase the amount of quality time you spend together with your child.  Even 30 minutes a day exercising as a family is beneficial for overall health, functioning, stress reduction, and cohesion.  I’d also be willing to bet that the activities you can do with your child are more beneficial for your child than the activities that the school system provides in their P.E. classes.  Even better would be if you and your children went to a gym together.

As a side disclaimer about physical fitness for parents of special needs children: If telling you about all the health consequences like increased risk for chronic diseases doesn't peak your interest about fitness, then consider it from a different angle. The statistical fact that your adult children with disabilities will be living in your house longer than you anticipated (due to service system wait times and current financial outlooks), also means that you will be their primary caregiver for your child for a longer duration - both financially, as well as in daily living activities. What this means is that if you are retirement age, have an adult with disabilities living at home with you, and you are not physically or psychologically healthy, then your ability to be a caregiver, your ability to take care of yourself, and provide financially for yourself and family will decrease. Who will support you economically and physically if you are putting all your time and resources into trying to support your adult child, all while your own health may be declining. This side tangent is me trying to motivate you to take the best care of your own health now, as even for you, your investment in your own health now can also pay off dividends for you and your family as you continue to age. By engaging in physical activity now with your child with special needs, not only will you be helping them, but in turn you will be helping yourself.

Now, imagine a protractor from math class.  Movement from one line to the next on the protractor results in a profound distance of separation from one point to the other, over distance in time. One degree of difference can result in a geographic separation of kilometers, the longer the lines continue off in time.This is the same as in counselling - small movements in a direction can have larger net consequences over the long term.  Think of how little time it would take for you to educate and prepare your child for real life now, and the drastic change it could make for them in future decades.  This is also a fundamental concept in counselling - to see a change happen, you have to effect that change - you cannot rely on others to change, simply because you want change to happen.  You need to make it happen, even incrementally.  You need to do something different if you want different results or experiences.  This is no different in family therapy, than it is in counselling children and youth - instead of “fixing” the child, you need to look at what you can do differently as a parent to effect that change.  And indeed, a large reason why I left the children’s sector is that I realized, I was counselling the parents more than the children.  Now, to bring this full circle - to make sure your child is the best prepared for their future, given the shortcoming of the public support system, you need to make changes yourself.  These small changes in daily routine and habits now will pay off dividends later, not only for you, but for your child as well.  The worst thing a parent can do is fully rely on the public systems, especially if they have a child with a disability.  To see a change in outcome for your child, for yourself, and for your family as a whole, you will need to step up and effect that change yourself.