When Well-Meaning Strangers Don't See Special Needs | Giftie Etcetera: When Well-Meaning Strangers Don't See Special Needs

Tuesday, April 26, 2016

When Well-Meaning Strangers Don't See Special Needs

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Imagine you are sitting in a restaurant and a child picks up the salt shaker from the table and licks it.

Now, pretend that the parent moves the salt shaker away, but doesn't correct the child. 



parenting, special needs, exceptional needs, children, disabilities



Do you freak out? Glare? Get disgusted? Say something to the management? Say something to the parent?


Sometimes, I am that parent who doesn't correct her child.


My kid doesn't lick things. 


Oral fixation is not his particular issue. It is for plenty of kids, though, and many are non-communicative. That means telling them not to lick would do nothing. Instead, the parent simply asks the wait staff to clean the salt container.

What my kid will do is stare intently, roll his eyes, and, when you repeat the question or direction, insist that you never said that.

You see, that's the way about 90% of his seizures appear - staring, followed by eyes rolling up with rapid blinking, and memory loss with a side of confusion. 



I don't correct my child for uncontrollable activity.


Sure, we practice being polite. It is expected when he is not seizing, and there are consequences when he isn't polite and praises when he is kind.

But right after a seizure, during the confusion of feeling funny, lost time, and memory loss, no amount of discipline is going to keep a 7-year-old from sounding annoyed at the grown-ups.

If he gets overwhelmed, he hides from everyone, including teachers in the classroom.

Again, discipline isn't going to change that.

Instead, we identify and avoid triggers, work on ways to deal with stress with his counselor, and have him in special twice-a-week classes for pragmatic speech.



Still, people feel the need to tell me to do something about his actions.


I never know what to say. 

Do I tell him he has epilepsy? Do I mention his trouble dealing with people and lights and sounds? Do I explain how his brain functions (or doesn't)?

He's a really smart kid. In some ways, that makes the struggle more difficult.

One parent of several children with special needs explained that if people see a child in a wheelchair, they understand.



But if the child is high functioning or the disability is invisible, people feel entitled to judge the parent.


I could just ignore them. I tried that.

It didn't work. It left me feeling embarrassed at my reluctance to explain. I felt like I was harming my child, and all the other children who have special needs.

Now, if you are a parent of a child in this situation, and you choose to politely ignore these well-meaning strangers (or, let's face it, friends and family), good for you! I completely respect that choice and your protection of your child's privacy.



I've made a different decision - a conscious decision to educate the judgmental adults.


I spoke to my kid first. He is so high functioning that he could talk to me about whether it was okay to be open about epilepsy.

If you roll your eyes, glare, or say something about my child's behavior, I will respond. I'll be polite (at least at first), but I will let you know that you don't understand, that he has special needs, and that it isn't your place to judge.



So what can members of the public do to help parents of special needs children?


You can try the same thing that you can do to help all parents.



Assume that the parents know best.


(One exception is in cases of abuse or neglect, in which case you should contact the authorities).

Sure, this means some little brats will be getting away with being little brats. Honestly, that one time you asked the mom "aren't you going to control your child?" isn't going to change that mom or that child. A parent who doesn't discipline can't be shamed into disciplining. They usually just don't care enough to bother.

But for that special family that needs and deserves your support, staying quiet and limiting comments to supportive praise can change the world that the family struggles with every day.


Etcetera.



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4 comments:

ZoeAnn Yussman said...

Amen and God bless you and your son!!
My developmentally delayed daughter (now22) and I have been in some sticky situations and I have not always been able to hold myself together when people try to tell me what I should do. They might not have seen me explain to her 100 times that NO we aren't doing whatever it is she wants....the stranger only glimpses my 30seconds of saying "shut up" because I just can't take it any more. Then said stranger tells me not to speak to her like that. WHAT???? I got in this lady's face and told her she had best stay out of my business because she had no clue. Did I feel good about that? Of course not. But no one. NO ONE knows what we go through and how best to deal with our special kids. So strangers.... Observe closely and be gentle. It is not always what it appears!

Anna Wegner said...

My feelings on advice about parenting can be summed up, "If you don't have anything nice to say, don't say anything at all." Even if I have a closer relationship with another parent, I don't feel free to give parenting advice unsolicited. If asked for advice, I will share general ideas and what has worked for me. It can be helpful to know that someone else has had similar struggles.

Correcting random strangers (or even casual acquaintances) parenting is only going to do harm, not good. If you can encourage someone with a positive comment, do that. If not, keep your opinions to yourself. It is true that we never know what another person or family is going through or dealing with. My kids aren't special needs, but our international living can take its toll on them. We've been in crisis situations, and they've had to face some hard things.

I won't share details to protect privacy of my kids, but there are times when people could have thought that we were not doing a good job as parents. We knew that it was part of the grieving/ healing process, we were working through it, and that it wouldn't last forever.

There are many ways to experience grief and trauma- illness, break-up of family, loss of a parent, suffering abuse- and these things will most likely not be obvious when you look at child. They may come out in "misbehavior."

Parenting is a hard job, and it will just be even harder with criticism from others. We need to give each other lots of grace and support.

Kathleen said...

Like you said, a comment isn't going to change a parent or child's behavior. I'm so glad that you are so supportive of your son. That will be so important as he grows older. Thank you for linking up to Tips and Tricks. Hope to see you again this week.

Jeanie said...

So true. This also applies to seemingly able bodied people parking in handicapped spots. My former neighbor with a heart condition use to get chided by others who believed she was abusing the system. I do love complimenting people when I see good parenting though. People are so quick to criticize but are misers with praise.