One of the hardest things to come to terms with as a special needs parent is the reality that your child may never get to do all the things in life you or your other children have experienced.
These can be from the smallest of things.....such as eating ice cream (they may have a complete aversion to cold things) up to getting married and having a family of their own!!
The impact of any big or small event being missed has a profound effect on a special needs parent.....your child's disability is re affirmed and all the struggles they face are forced to the surface......you have to grieve another milestone that is lost to them and to you!! It knocks you back, you may cry over it or feel angry.....or even feel numb to it as there have been so many of them on your journey you have just gotten used to it all now!
You have to grow a thick skin as a special needs parent, toughen up and not only be a carer but also a fighter and a voice for your child. It changes a person......for me I feel for the better!?
I no longer judge anyone on first impressions, no one knows what's behind someone's smile.....I've worn that "fake" smile.....said the words that people want to hear in response to "how are things?"......I've avoided people and places because I knew my child would stick out like a sore thumb and everyone would stare at her!!!......not that she would even notice or care.....I do!! Wish I didn't but its a mother's natural instinct to guard and protect their babies from any negative attention.....People tell you to ignore it or turn the other cheek!! Just walk away from the situation......but why should we???? Does our child not deserve to be included in all things that "Nero typical" kids enjoy?? Do they not have the right to be themselves out in public and not be prevented to make odd noises or act in a different Manor than other kids .....just because it can make others feel uncomfortable,,or cause.them to be laughed at???!
To me this is not acceptable.....I won't walk away or ignore! I need to explain the situation....I need to make people aware of their ignorance (as politely as possible!) For them to teach the next generation that our children are here and not going anywhere!!
They have the same rights and should be respected and treated in the same ways as children with no disabilities! I also feel I need to speak up for all the special needs parents who do not have the strength to so themselves! They struggle to cope day to day and having to deal with people who don't understand their child fills them with dread....this can cause then to stop even attempting to take their children out in public! Believe me....I have been there too!
If you are reading this blog and you are a special needs parent.....be strong.....turn and smile at the ignorant people....even a fake smile....they want to cause upset to you!! If you can say something do so...if not don't give them the upper hand in seeing you upset! Carry on with your day or even take your child away from the negative environment you are in.....If I was there I'd speak for you and maybe you'd have some other person willing to do so...but just remember that you and your child are better than them in every way!!
If you are reading this and you don't have a child with special needs or dont know anyone who has......just stop for one moment before you react......don't stand and stare..don't whisper to people around you! Don't laugh or point.....don't comment on a situation you know nothing about or understand in any way! Just try and imagine for one second that was you and your child or someone else you love.....imagine how hard their life is....how hard work daily routine is.....try, just try.....and if you do say anything maybe just say "are you OK?" Or "can I help?" this would mean everything to them even if they declined help.......if not, say nothing! Look away or walk away......dealing with our child's behaviour is normal to us.....dealing with ignorant people is not and should never be the norm!
There will always be differculties and hurdles for our children.......we accept them with heavy hearts but we carry on.......
.......that is our "harsh reality".....
A special needs life.