The underbelly

For the most part when you read chronicles of parents of children with disabilities the prevailing message is about the hidden blessings.  The theme revolves around the road less travelled and how even though most do not choose to parent a child with differences in being gifted with one they have been shown immeasurable joy through the heartache.  They (we) talk about how these special children through their lifelong innocence give us a little glimpse of heaven.  We are lead into a community that perhaps without our children and their disabilities we would have ignored, pitied and secretly or otherwise be grateful we were not apart of.  We learn to live more simplistically and know how to celebrate the little accomplishments that to us are huge as we have been witness to what it took to get there.

This is all true.  However.  There are times when parenting the child with special needs really and truly sucks!  I know this can be said about parenting in general as there are challenges within every stage of development however that is the key....they are stages of development that the average child experiences and passes on through.  Many of our children get stuck at one particular stage.  That's all fine and dandy if you are a perpetually charming, adorable three or four year old who is easily impressed with your brilliance and jokes.  Try stuck at belligerent, know it all, defiant, limit pushing thirteen year old combined with a penchant for story telling.  Then my friends...you have yourself a party!

I have such a son.  He is twenty five years old and has been living outside of the home for some time now.  He requires a supported living arrangement which after some trial and error we were able to luck into an angel of a woman who not only loved him but was willing to put up with so much that the majority (including myself) could not.  There is no known diagnosis for my son other than it is believed to be genetic and he has the thought processes of someone with fetal alcohol syndrome ( for those who don't know a basic description of someone with FAS is that they do not learn from their mistakes.  Truth for some is definitely not their middle name and some should be prize winning authors with their 'stories').  He knows he is cognitively disabled but he, as is typical of belligerent teens is unwilling to accept to what degree and that he requires more assistance than what he is willing to accept.  You know the bumper sticker that has been around for years that says something to the effect of "Hey teenagers, why don't you move out now while you know it all"?  That is the situation we find ourselves in.

Personal hygiene would fall at a seven year old level that's when getting them into the shower is the equivalent to getting a cat in there.  Lucky I grew up watching Grizzly Adams and had a secret crush as my son looks like a blonde version of him on a regular basis.  If allowed to cook having a fire extinguisher handy, 911 programmed into the phone and a complete dislike for any of your pans and cooking utensils  is a necessity. If something catches his eye it falls under the finders keepers law.  I could go on.

All attempts at keeping him and those around him safe are met with with disdain and rejection because he does not NEED THE HELP thank you very much!  The problem is all of the boy's patterns of behaviour have not changed since forever.  He has honed his skills and been able to use them at a more advanced level because of twenty five years experience however what were present at age three still exist today.
Unfortunately that is another premise the man child refuses to acknowledge (as how could he?).  When requesting a new "chance" to show he has changed etc etc he cannot bring forth the recollection that just last week he committed some offence that he wants you to see he has left in the years gone by past.  When reminded we resort to "but Mommy puleeeaaase".  When all arguments and whining have failed then using all manner of profanity is tried next.  I know that it worked on my mother...sure as shootin if I threw around the f bomb to get what I want she instantly caved (the real story is if I tried any profanity my head would have been swiftly removed from my body).

It is tough to be a man in the middle.  He has the body of a grown man.  He wants the same things as any grown man, independence, freedom, autonomy, control over any monies he might have but yet does not have the skills (and not for the lack of trying on anyones part I assure you!) to manage any of it.  Ultimately there is always someone at the helm of his life and he fights against it at any turn. I have been fired as his mother too many times to count and banished from his life just as many. It is painful and heartbreaking to be the one he considers to be ruining his life and chances at happiness and it is also exhausting trying to determine how to best help him attain some degree of happiness and contentment.  Lucky we do have a close foundation and I am his Mommy again.

Parenting my son is a life long job and one that I willingly signed on for and continue to man up for but I will tell you folks that it ain't for the faint of heart some days.  Having a commitment to your son but also the  community at large sometimes puts you in a position where you must protect the two from each other which really can suck the big one from the perspective of a mother's heart.  What is devastating the most is when your son feels betrayed by the one person who is supposed to always have his back.  To hurt your child in order to protect him or someone else never feels good.  When our children are young we encourage them to reach for the stars, even our children where the stars are that much further from reach.  As an adult with disabilities sometimes we must go against all things maternal by saying "you can't do that"  "you will not be able to do that".  How hard is that to hear from your mother?  It's bad enough that society in general is difficult to navigate but for your own mother to point out your limitations?  So so tough.

That is the underbelly of raising some kids with special needs.  Certainly there are way worse scenarios but what I wanted to point out is that everything is not all wine and roses in this different parenting journey.  Sometimes its whine and weeds....  I think this is important to know especially if you are new to the world of kids with differences.  I think there is so much out there about what a blessing the child is and how the world is a much better place for you now that your child with disabilities is in your life and again I hang my hat on that and drank the koolaid long ago as a teenager.  But it is important to point out that it is also hard and sometimes really H.A.R.D and it is okay to feel it, admit it and even shout it out from the rooftops.