Monday, November 17, 2014

Is your kid disabled enough? Walking isn't everything.

Wait, what?  Is that even a thing?

Oh yes, it is a thing.  Among Special Needs Families.  I guess like all aspects of parenting the sense of competition never goes away, even if it's a competition that nobody truly wants to win.  It's hard.  Every kid is different.  No two children are affected in exactly the same way, but we like to try and find people who share similar journeys to find some solidarity, people who understand and truly get what it is like to be us.  In doing that, I suppose we look around, look at other children and think, nope, no way, that person doesn't belong in my group, they have no idea what I'm going through, they have things so much easier than I do.  

One of the biggest failings of this sort of categorisation I think, is the focus on physical ability.   Of course, physical ability is important.  There is a huge difference between a 4 year old who is mobile and a 4 year old who has the physical capabilities of a newborn.  Nobody would deny that is true, and  it would be easy to determine "severity" with that sort of comparison.  
But what about among children who are more mild to moderate in their physical impairments?  It seems we tend to latch on to some sort of physical ability when it comes to trying to determine where a child fits in terms of severity. Can they sit?  Can they walk?  These are all measures of how affected someone is by their disability.

But who is more disabled?  The child who can walk independently, or the child who can only walk with a walker? First impressions tell you that a child who cannot walk unassisted is clearly more disabled right?
But what happens if the child who walks with the walker is completely on track developmentally in every other way?  Socially, Cognitively, and Language wise they are performing at or above the expected level for their age?
What happens if the child who walks independently is well below their age in every developmental area?   What happens if they are years behind their same age peers when it comes to their social, cognitive and communication skills?   Who really has the biggest struggles?

I know when Joshua couldn't walk, I saw walking as the be all and end all of life.  If your child could walk, you had it better than me.  If only my child could walk, everything would be fine.  

Well I'm on the other side of that now, and I'm here to tell you that walking isn't everything. Having a child who walks independently doesn't solve all of your problems.  It helps.  It solves many of the daily logistical challenges of moving around with a child who cannot move themselves.  But it also adds to your problems too.  Especially when your child is otherwise impaired. You've just changed your problems.  From -it's so hard to get around with my kid who can't walk, gee people whose children walk on their own have no idea how easy they have it when their child can just walk and they don't have to worry about managing extra equipment and dealing with accessibility challenges.  To-  Holy shit, how am I supposed to keep this child safe?  This child who can move on their own but has no age appropriate concepts to keep them safe?

I see the parents of typical 4 year olds.  Walking along, with their children walking beside them from one place to another.  That is not me.  My child needs to be physically restrained in a stroller or I need to have one hand on him 100% of the time.  I can't even take a hand off him to do something simple like pay for an item I am purchasing.  If I did that, he would be gone.  Most children by 4, have a basic understanding that you can't just run out into the road.  Sure, they can't be trusted to navigate traffic properly on their own, but most can be trusted to walk, and then stop at the edge of the road to wait for their parent to cross safely.  Mine can't.  He has no sense of danger, no concept of what might happen to him.  Going somewhere with him, although he can walk, still involves physical management 100% of the time unless it happens to be a safe, kid oriented location where he is able to have some freedom.  Even then, 100% supervision is still needed to ensure that his behaviour isn't detrimental to other people trying to enjoy the space.  Because my child doesn't know how to play like a typical child.  He doesn't understand other children's games, and he doesn't understand appropriate use of shared equipment.  My neurotypical 2 year old walks on her own, while I have to constantly manage my 4 year old.  My 2 year old is better at listening, following directions and staying safe.  Don't misunderstand that either.  She isn't some freak of nature.  She is like any other 2 year old.  She wants her own way, she is wilful, impulsive, defiant, and can throw a tantrum like any other.  But she is STILL easier to manage than my 4 year old when out in public.  

I'm really grateful that my child can walk.  I'm really grateful that the amount of special equipment that we need is minimal.  I'm really grateful that he doesn't currently have seizures.  And I am really grateful that he is in good health.  I KNOW there are loads of parents out there doing it tough with kids whose daily needs are much greater than mine.    But please don't look at my child walking and discount our struggles.  Intellectual Disability affects every aspect of a person's life, just like a physical disability does.   My child's intellectual disability is greater than his physical disability.   There are so many skills that go into independent daily living that we take for granted if we are not forced to think about them, and having an Intellectual disability impacts all of these things.

Intellectual disability is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills.  
Intellectual functioning—also called intelligence—refers to general mental capacity, such as learning, reasoning, problem solving, and so on.

Adaptive behavior is the collection of conceptional, social, and practical skills that are learned and performed by people in their everyday lives. 
  • Conceptual skills—language and literacy; money, time, and number concepts; and self-direction.
  • Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.
  • Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone.
Please don't assume that because my child can walk, it means he won't have significant problems with some or all of these tasks that are essential to daily living.  He has already been tested and scored "very low" for his adaptive functioning.  He is at or below the 1% mark for children his age in all areas of functioning.  Yes, there are children who score below him.  That doesn't change the fact that the vast majority of children his age score well above him.
We can continue to hope for improvement.  We will continue to work towards improvement.  He is only little.  That percentage may or may not change in the future.  But one thing is for sure, and that is that he will always have some degree of intellectual impairment and deficits in adaptive functioning.  He is not going to "catch up".  He isn't ever going to be "average".  

Walking isn't everything.