Monday, January 16, 2012

Accepting limitations in a child with special needs

  Sometimes while being a stay at home parent, it feels like you are living the same day over and over and over again. I wake up at the same time each morning, get the boys out of their beds, sit in the rocking chair with them and sing them a song or two. Then I put them down in their play area (Ben cries while Jack gets right down to the business of playing), and make them sippies of almond milk. I hand them each a sippy at the exact same moment or else the one who got his first will be attacked by the other. Then I change their diapers, get them dressed, make breakfast, and we sit at the table. Jack eats, Ben throws all his food on the floor (I still am not 100% sure how it is he survives on the very few morsels that make it to his mouth).

That's just the first hour, but I assure you the rest of the hours are just slight variations of that last paragraph, and it is the same, day after day.

  My point is that it's sometimes very hard to keep sight of the BIG picture while drudging through the monotony of day-to-day parenting: Teaching a small human being how to ultimately be a big human being who is productive, compassionate, and self sufficient. Sure, we've all been guilty of putting a child in a time out simply because we are irritated by something they keep doing, but generally speaking you discipline a child because they are doing something that isn't acceptable in our home and probably out in society. We are teaching them the rules of a civilized world so that when it comes down to it, they can function without us there to tell them which path to take.

  But what if you know you aren't raising a child so that he can be self sufficient? Of course no one can see the future, and you never ever ever want to discount your own child's potential. But sometimes, parents of children with particular special needs need to accept what is and isn't in the cards for their children. This is an unfair comparison but imagine for a second that your 20 something year old son comes to you and says he's finally ready to admit what he's known for some time: He's gay. Depending on your own lifestyle and choices, it might take you awhile to come to terms with the fact that you may never have any biological grandchildren, that your son will be bringing his boyfriends home to dinner, and that you may have to travel to a different state to attend his wedding someday. But would you tell him everyday that he'll snap out of it, find himself a nice lady, and be 'normal'? Not if you want him to know that you love and accept him. You may still mourn the 'loss' of not getting to share your favorite recipes with your daughter in law, but you accept it and move on because your relationship with your child will suffer if you don't.

  To be sure, I am NOT comparing homosexuality to a disability of any kind. I am simply saying that as parents, we all have images of who our children will be from the moment they are born and they very rarely follow the path the imagined. Regardless, they are still our children and we accept them for everything that they are in order to love them unconditionally.

  In certain circumstances it is pretty apparent that, barring some sort of miracle, a child will not ever live independently. That is the case with out oldest son Jack. Right now, our goal for him is to be able to speak and if not that, at least be able to communicate through signs or pictures things like his needs and where it hurts. Looking forward, I hope that he will be potty trained someday, am hesitant but hopeful that he can put his own clothes and shoes on eventually, and sometimes when I am alone so no one is there to see me get emotional about it, I allow myself to imagine a time when he can do something complex like make himself a sandwich. The course that he is on now, living on his own is not on the table for him.

  Some may say, "How dare you give up on your son like that!" and my response is that if anything, I have finally fully embraced my son, and no one wants more for him or expects more from him than myself and my husband. However, spending our days dreaming about the things he will never do will only prolong the sense of loss in us. It's time to accept it, cry about it, then get over it and start living each day teaching him to be kind, to use his voice (or hands), to enjoy eating at the table and to look both ways before he enters the road, and for God's sake to stop pushing his brother. True, we don't know what the BIG picture is for Jack exactly, but we know what it's probably not. There is no greater disservice that can be payed to a child than to hold him to an unobtainable expectation. Then both the parent and the child will feel they have failed the other.

  Sure, I still mourn the 'loss'. My heart breaks when I look at the journal I started writing for Jack the day I found out I was pregnant. I planned on giving it to him when he and his wife were having their first baby and I fully expected him to be able to read and understand the words I was writing someday, to hug me and say "This means so much to me, Mom." Yeah, that stings. I am sad, but I am not ashamed, I accept my son for who he is and I love him unconditionally. I think that you have to be honest about what "full potential" means for your child before you can push them to reach it. If you are always trying to force them to be something that they just can't be, or if you are forever dreaming about the things you wish they were, you are totally and completely missing the beauty of the person that they actually are.

1 comment:

  1. Bless you sweet child. I wish every parent of EVERY child could read this and truely understand it.The boys are so fortunate to have you and Chris as parents.