Tag Archives: parents

It’s Not Personal: A Special Needs Parent’s Apology to Everyone She’s Going to Upset

I'msorryDear [             ]:

I’m sorry.

I’m sorry to have ruined your day, angered you, or caused your supervisor to watch you closely.  I know what bad days, frustration, and job pressures feel like.  It wasn’t my intention to cause you problems.  It may not feel like that to you, but it’s true.

I know that –when you aren’t busy being the person I had to get unpleasant with –you’re probably a very nice person.  I’m sure that your family loves you, friends think you’re wonderful, and you’re an active church member.  If circumstances were different, we might be friends.

But the great person whom I’m sure you are intersected with a road I’m traveling to meet the needs of my special needs child.  To put it simply – you got in my way.  In some way significant to my child, you failed to do your job.  Do I think that makes you evil?  No, I think that makes you human.  But the issue isn’t how I feel about you.  The issue is a vulnerable little boy who cannot speak for himself – my vulnerable little boy.

There are a lot of reasons why you might fail to do right by my special needs child.  You may be overworked.  You may not have enough resources.  Your boss may be a jerk—or clueless.  You might not have the knowledge or time to do what is being asked of you.  Most likely, you are simply a part of an educational system that has been broken for so long no one knows what it is supposed to look like when it works.  Most likely, you probably already know that – but fear of rocking the boat or drawing parental attention caused you to go along with what you knew to be wrong.  You may feel helpless about that and wish it were different.  I’ll let you in on a secret – I feel the same way.

But feelings and wishes – over truth and action- are luxuries I don’t have.  I can’t blame it on the system, lack of money, or others and go about my day.  You see, this child is mine.  And you and I know all too well who will step forward to advocate for my child if I don’t – no one.  Not really.  They’ll think he’s adorable, sign him up for an hour of therapy or so a week, and set goals for him low enough for him to achieve in a year. They’ll finish his IEP in 15 minutes and tell themselves they’ve done their jobs.

But it won’t keep them up at night.  It won’t drive them to learn and do more.  They won’t feel a sense of panic as precious time is lost.  It won’t incite their indignation.  It won’t be their child, so…

It won’t be personal.

But his well-being is my purpose for being here.  Having made the decision to have and raise a child, he shot straight to the top of my priority list – even if he isn’t at the top of yours or the system you work for.  If you fail to make a call, provide a service, determine and meet his needs, allow him to be under-challenged, ignore his IEP, traumatize him in some way, or do him any kind of educational or moral injustice – then it’s my job to be there, draw attention to it, and make it right.

So, unfortunately, that’s where your path and my path have crossed.  I’m sympathetic to whatever caused you to be here.  But my job is incompatible with looking the other way while you don’t do yours.   No matter what the reason.  It’s just that black and white – even if it isn’t completely your fault.

This isn’t going to change anything.  I’m still going to be there.  I’ll still be watching closely.  I’ll be polite, but I will be that parent.  The parent who writes the letters, makes the phone calls, requests the records, researches the issue, analyzes the data, knows the law, and makes it her mission to know more about my child’s disability and issues than you or anyone you work with.  Which means there may come a time when his needs and rights are in conflict with your convenience, budget, or the status quo.  Again, I’m sorry about that.

But I want you to know– it’s not personal.

Update:  This post has touched a nerve with some folks who may not be familiar with my writing or blog.  This post is not anti-teacher.  Teachers aren’t usually the problem.  I know.  I AM a teacher.  Most are wonderful, including my son’s.  I’m talking today about the folks who make the real decisions that affect special needs students and their classrooms.  And, while I would never be rude with anyone, I can and will do whatever is necessary-within the law – to ensure my son receives what he has a right to under federal law. 

I May Be Oversharing about My Special Needs Child, and That’s Okay

autismscrabbleI write about my children — in particular, my autistic child — on the Internet. I write about them and share my own experiences in raising them — for complete strangers to read. My joys, mistakes, successes, grief, guilt, self-doubt, and even those dark, middle-of-the-night moments of all-encompassing fear. I write about it all. That’s me. I’m a special needs parent blogger.

And there are some folks out there who take issue with it.

There are those who question the wisdom of sharing my child and my life with the whole world. On the surface, my actions seem unwise. Why would I “overshare” with the world? Why not just find real-life friends and support? Why do I put myself “out there”?

Well, just as the world isn’t an easy place to be for those with special needs, it often isn’t much kinder to their parents. A hundred years ago, parents of special needs children were likely to have larger families — sisters and brothers who helped with the daily needs of the family and home. Because people started their families earlier, there were often multiple generations able to help out. More aunts, uncles, cousins, and grandparents to call upon.

Yet, special needs families today aren’t usually so fortunate. Many of us are spread across the county — far from family. Many, due to the extended start of childbearing, no longer have the wisdom and comfort of our mothers, aunts, grandmothers, and other mothers who’ve made this journey before. We don’t all have the support of a church family or neighborhoods where we all know each others’ names.

So, special needs parents (and all parents really) find themselves adrift in a society in which, “How are you?” has no more meaning than “Hello.” We are isolated, with no one to tell us that we are doing it right, that we might try this, or that it isn’t our fault. Special needs parenting is a lonely journey for so many of us.

The Internet has changed that somewhat. In the last two years, I have interacted with thousands of other special needs parents. Those who are like me — just starting out and wondering if they are going to make it. Those a few years in — who share resources of what helped them not so long ago. Those whose children are grown — who reach out with a gentle pat and say, “Honey, you’re doing just fine. What you are feeling is normal. It’s gonna be okay.” All of them — all of them — sustain me and others like me. They are the community we need and cannot always find locally. They connect us and remind us of a basic human need — to know that we are not alone.

There are some who question the loyalty of a parent who would “violate her child’s trust” by exposing his needs and differences to the world. Why would I choose to share that which Continued at WhatToExpect.com…