Everything You Wanted to Know About Why You Can’t Get Your Kid Help

I say it all the time, “Unless you are walking the walk and talking the talk,” then you have no idea what parents of a child with a disability, who learn differently, or has special needs, are going through. People can use any “child-first” language they want; it won’t change a thing. While there is nothing inherently wrong with people spreading their opinions, it’s just the way it is.

But truth be told, I’m really just tired of other people telling me what I should do, what I could do, or quite frankly, how to raise my kidlet. It’s. Not. Something. I. Want. To. Hear. From. A. Non-Parent.

That might sound bitter and ugly, and well–it is.

It takes a village

When our children are young, there are plenty of groups, clubs and organizations available to help us with challenges such as respite, education, therapies, and even social groups. Local “do-gooders” literally falling all over us. We think it’s wonderful that so many people are involved in our lives. Naively, we listen and take all the advice we can get. We continue this façade throughout our child’s educational years. Then just as quickly as the graduation is over, so is the support.

But what do these well wishers really know about what we’re going through? The answer is, they don’t know a thing.

This is us

Somewhere along the line, I might have been told to contact the local Department of Disabilities (DOD); surely they could help. Here is where my infamous “red-tape” montage kicks in. My assessment of this agency will most likely only be understood by other parents like me so it’s best to keep it to myself; us “walkers” and “talkers” know where I am coming from. Check…next!

Public schools offer accommodations and modifications based on evaluations and teacher recommendations, but we might have to have a meeting first to talk about having another meeting before services will be implemented. Check…next!

Colleges accommodate, but not modify services; so there’s that. And they should; after all, people should earn a degree the right way. But what if one can’t. How about a trade school? Or a college certificate maybe? Great, but don’t forget, a student most likely still needs to meet certain Math or Reading requirements. Check…next!

For fun, we could sign them up at a local church or social group. That’s a terrific idea, until it isn’t. Do religious denominations discriminate? Not sure; we will have to become members of the church and donate weekly in order to find out. Something about a congregation demanding I become a member first seems so bossy to me. I don’t want to take up a seat on Sunday, I just want my kid to meet a friend. Check…next!

I would be amiss if I didn’t dish on the transportation issue. I would gladly carry my kidlet anywhere if there were such a place to go. It would be better if there were transportation services provided, especially since my taxpaying dollars say there are, but there are none, unless of course, one is registered with the DOD. Well, here we go round in circles. Sure, Uber’s available. Check…next!

Singing Kumbaya

How about these counselors? Why do they call themselves, Licensed Professional Counselors (LPC’s) anyway?  What’s so professional about sitting around singing “Kumbaya” and talking about my childhood?  We need real support and real assistance and we need it now. Leave my upbringing out of it.

When I call the local government agency, I need an actual “body” to answer the phone. We need mentors for our teenagers and honest people who will be our kid’s friend. We need to know that the LPC’s are not staring at us in the face while taking notes about how we might be a good patient for “Nurse Ratched.” But most of all, we need to know they won’t judge us by having their hand on the phone ready to dial-up another government agency to report their findings.

Because you don’t know what we know. You only know what we tell you. 

The most unfortunate part of parenting a special needs child, is that parents can’t get help if they can’t tell the truth; and we can’t, so we don’t. We can’t tell the truth because people who think they know what is going on in our lives, really have no idea.

Fighting the system is real and so are our sleepless nights. Sharks hover in real life as well our dreams.

Desperate to help our child and for someone, anyone, to recognize the strain, we keep it all to ourselves; unless we can find the time and energy to make our own special friends. Check…next!

 

 

 

2 comments

  • John V Giacchino

    Your exactly correct. The system is broke down from, the top all the to way to the bottom. I personally have no children and couldn’t even imagine the frustration this has
    upon a family. I do remember my Dad, asking for some very simple. accommodations for me when i was in grade school. This was a long time ago. I only have the memory of my Dad telling me Iam going to have to be strong and when you get a liitle older you may not need any assistance.

    • Yes, even though you do not have kids, you know what many people are going through. It is frustrating. I am glad your dad talked to you about being independent and being strong. Self-help always leads to positive things in life. Thanks!

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