I have thoughts on my mind tonight that I’d rather not have! When you read where one caregiver is taking out their own frustrations onto the child to which has a disability it becomes amazing clear that the caregiver needs to take a step back and reanalyze their thoughts on their child! Yes, I know our roles as special needs parents can be cumbersome, I’ve been on the journey for 10 years now myself and life-altering it has been! However, as a special needs parent I can also say that to ‘grow in your knowledge’ as a parent/caregiver and learn the true depth of your child’s disability and what his/her needs are, should really become an overall “tone” that you carry.
My frustration starts from the moment it is clear that this caregiver throws their child’s “bad day/weekend” into a category of “not going to let him get away with it” type behavior! As if to make a point of saying that they believe the child is in total control of his/her actions! I will stop here and say on a side note that: having a disability can sometimes give a person the wrong idea, especially a young child, that they can get away many of life’s daily irritations JUST because they have a disability ….and their momma’s said so! Ha! I know all too well that mentality ….and I work feverishly to ensure that my little Hero does not try to play the disability card. I can think back to a recent time where my little angel was getting out of the car and bumped his foot and proclaimed “I need a wheelchair, I cannot walk!” Needless to say, we had a long talk about what it means when one “needs” a wheelchair.
Another thought on this topic is that when a child with a developmental disorder that’s characterized by impaired social interaction, verbal and non verbal communication and restricted and repetitive behaviors, is having a ‘bad day’ it is wise to seek out the “whys” and “what may be causing this behavior” questions rather than simply writing it off to bad behavior.Question things like: What changed today that made it hard for him/her? To assume that the child can control it and was just attempting to make the caregivers day difficult proves to be bigger ‘trouble a brewing’ down the road.
By far my biggest hurdle in accepting this person’s out of place comments is that it was done so ‘tongue and cheek’ as to amuse their audience. I totally understand the need to unwind after a difficult day of parenting but at the expense of your disabled child is not acceptable! Yes, I make reference to hardships and sometimes the oddities that come with raising a non typical child, but mostly to show the world around us that though our life is different, it is okay.
I remember the early days of not knowing our Hero’s needs. It had a lot to do with me just wanting things to get easier, I wanted my life to roll on by like everyone else’s around me! That made me mad quite frankly and I wanted a normal life, plain and simple. It was easy to get upset at the very situation that my son could not help. I had my share of those days, wanting “change” …..truth is, it was not him that needed it, it was me!
I always like that phrase “The most import days of your life are :the day you were born, and the day you find out why!” ~ Mark Twain. To me, the day I truly started to enjoy myself as a parent was not so much the day he was born, however, it was the day I quit trying to change him so much and I started to accept him instead. That was my “why” in life, it all started to make sense!
lastly, I don’t write about this frustration I saw from this fellow parent because I want to belittle them, instead I’d like to educate them as to how they are in this for the marathon, not the sprint! It takes time to raise a special needs child, you will learn this ….pace yourself. In the meantime, enjoy the ride and advocate for him ~ then you will know your “why!” I HOPE you find it for the both of you!