I attend a special group every Wednesday morning (well…as often as I can). I wont call it a mother’s group, as men are welcome, and quite often get grandmothers and other care givers attending. This group is a support group of parents and carers of children with special needs, both mental and physical. A vast majority of the ladies who attend have children with autism or Global Development Delay. However, there are a few (including myself) who have those with physical conditions (like cystic fibrosis)
Half the time, we have guest speakers, or certain topics to talk about (the rest is just sitting around having a chat over a cup of coffee). Last week’s topic was “Dealing with people’s reactions to you child’s disability”
I kinda hogged the talking (hey, four kids of disabilities and reactions worth here!!)
But, what do you hate hearing from people in regards to your child’s diagnosis/disability? I recently posed this question on my Facebook fan page, and have had a good response so far. A lot of I can personally relate to.
I ask you to add your own pet peeves. Check out the blog post by another mum who attends my support group, who recently wrote about the same thing (and I don’t feel I can write it any better than she has!)
My biggest pet peeve is the “God gave only as much as you can handle”.
I am not a terribly religious person. I class myself as ‘spiritual’. But God has nothing to do with what my family is going through and how we live our day-to-day life. I quite often wonder if He made a misjudgment in my abilities as a mother and just maybe, gave me ‘too much’. My next statement will be controversial, but I struggle to put my faith in something/someone who has apparently made my life very difficult.
Despite the big story I can write behind this comment, I find this statement very unhelpful. Am I just meant to say “Thank you”?
I tend to find myself just smiling and changing conversation.
After we all took turns of what we hated hearing, our support group coordinator then asked “What do you want to hear, then?”
The silence was awkward.
No one could think of anything for a moment. There are so many hurtful and unhelpful comments that get our backs up, but what can you possibly say to a special needs parent that is actually helpful?
One thing we all agreed on, it’s not the “You should do *this*”, it is a simple “Well, what can I do to help?”
If you know someone who has a child with special needs, take a legitimate interest in their struggles, take their lead on how you can help in a constructive way. It may just be the occasional ear for them to vent to. It may be the opportunity to go out for coffee once in a while. It may be a hand with babysitting.
As a young mum, my large circle of friends became smaller once I had a baby. At the age of 19yrs, I was at home looking after a baby. I couldn’t go out to parties as often anymore. Once more children came along, I went out even less. It became full battle strategy mode to go to the shops, let alone out to a friend’s house. The invitations stopped rolling in…
Later on, once we realised we had some special needs, that circle of friends got even smaller again. The friends that I have left I am exceptionally grateful for! If they read this, I LOVE YOU GUYS!! They understand that it is hard for me to get out, and if I do go out with kids in tow, it is hard to enjoy myself as I am stressing out, making sure that they aren’t trashing my friend’s house, running riot in the cafe, or playing with something that can make them sick.
These friends take an active interest in my family’s struggles. The biggest help they give me is by saying “Ok, so your kids are home today? I will come to your house for coffee then, instead of going out.” or they actually listen to my kids when they have something to say, and acting like it was the most interesting thing they have ever heard. They treat my kids like actual people.
So leave out the advice of what you think a parent should, or shouldn’t do with their children. Don’t make judgements. Just accept, and ask them what you can do to help.