Wednesday, May 22, 2013

What not to say to a parent with a newly diagnosed child...

image source:  link
With 1 in 5 people having a disability in some way , you would think the wider community would be compassionate and empathetic towards the carers of the disabled. Well you would think so. But sometimes it's the invisible disabilities or conditions that cop the comments, the stares, the questioning.

What is an invisible disability?
Invisible disabilities include but are not limited to ADHD, Narcolepsy, Epilepsy, Eating Disorders, Body Dysmorphia, Depression, Anxiety Disorders, Allergies, Arachnoiditis, Asperger Syndrome, Multiple Sclerosis, Chronic Lyme Disease, Chronic Fatigue Syndrome, Macular Degeneration, Bipolar Disorder, Diabetes, Hypoglycemia, Lupus, and Fibromyalgia. (source)

 So yes, I live with 2 children who have invisible disabilities.  There are good days and bad days, on a bad day I want to curl up in a ball and cry. On a good day, I want to sing with joy.   Most days, I function on little to no sleep, why? Well I have a baby who breastfeeds and a child who seems to have insomnia.  (yes we have tried everything putting him to bed late etc nothing works so don't bother with those tips even his specialist suggested those things).

So here is a list of what I shall dub the "Crap you shouldn't say to a parent or carer of children with a disability or medical condition"

1.  "I just don't know how you do it".   This may be a well meaning comment but really, think about, the person getting this comment doesn't know any other way of life, they have had to live that life for probably years now and do not know any different in the carer game. They probably do not even know what it is like to parent or care for a child without special needs. So you may think they are amazing etc but don't say you don't know how they do it.  I have even had this comment just because I have 4 boys. (haha like I have a choice in that dept ).

2. " He Doesn't look *insert invisible disability*"  No you're right I totally forgot to tattoo my child's diagnosis on to his forehead to prewarn other parents about it, honestly would you say that to about a child in a wheelchair or wearing a chemo cap? No, so why say it about an invisible disability.

3. "You should stop having kids if you have already got a child with a disability"  Really? I mean come on, If i want to turn my vagina into a clown car I will. if i want to be the next Duggar Clan on tv I totally will. My reproductive rights and the impact of another child do not interfere with anyone but my family and those in it.  Also, i find it just as inappropriate to be asked "when will you try for a girl"  look, when I can go through a drive thru and order "1 average size female newborn with a side of fries" i will totally go order one. it honestly is a case of "None of your business ".

4. "He doesn't know how to play with others, why don't you put him in an activity to socialize?" 
I have had this about Cody, and you know what honestly, he has learnt how to play a bit with others, he still doesn't know the full concept of playing games but he is learning.  It is hard work to understand the unspoken rules of games when you didn't always understand the concept of play. 

5. " Is he on medication?"  Well really unless you are his teacher, Dr or anyone who will be providing care for him at any time, it's none of your business.  I don't walk up to random strangers and ask them if they are taking medications so why should anyone feel they can comment on children?

6. "Your kid's not potty trained, yet?  My kid was potty trained before he was two.  Maybe you should ditch the diapers and force your kid to sit on the potty for hours a day, because it worked for me!"  Yep, I got this one a fair bit about Tyson. I actually started remarking on how lovely it must be to "train" a child with borderline abusive methods to fit in with their parent's lifestyle ideals.  That normally shuts them up. 

7. "Your son is *insert disability*  I'm so sorry."  Well it isn't like It was planned, I can vouch that most carers and parents would tell you saying this is not helpful nor a great thing to say. What are you sorry for? Honestly , are you saying "sorry you're child is disabled and exists?" or "sorry your life kinda sucks?" because no my life hasn't gone the way I planned, but it doesn't suck either. 

8. “You're lucky you have a normal kid too.” Define Normal, all my sons are normal. 

9.“Kids aren’t really *insert disability with behavioral symptoms*––they just need discipline.”  Oh really, How about you come and spend 24/7 with a child who has behavioral issues, since you seem to have found the magical vial, the holy grail , please by all means tell me your cure.  Discipline will not cure things like Autism, or ADHD/ ADD etc.  The last person to say a comment like this, actually got lectured by me , on how they were an idiot.  It turned out, I had been to more parenting courses, more workshops and read more books about child development & parenting, then the person making the comment. 

For more ideas on what not to say check out:
this article

This Link
And last but least this awesome article

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