People who “walk the walk and talk the talk” understand the how difficult, and also, how wonderful it is to raise a child who has special needs. Over the years, these parents will interact with people, who are not raising an exceptional child, but who are directly involved in our child’s education and development. While there is nothing inherently wrong with people voicing their pinions as to what they think should be done with our children, it’s just the way it is.
But truth be told, I’m just really 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 organizations available to help us with challenges such as respite, education, therapies, and even social groups. Local “do-gooders” seemingly are always ready to act. We appreciate the support and think it’s wonderful that so many people are involved in our lives. We listen and take all the advice we can get. Helping people with special needs in as admirable trait, so I don’t need to know their reasons for doing so.
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. Don’t forget to call the local Medicaid office and “get on the list.” Sometime ago, I learned there is a waitlist of upwards of about 10 years! Parents might want to at least contact this agency as soon as possible to at least find out about eligibility. Here is where the “red-tape” kicks in. How many phone calls can we make, (or forms can we fill out), and still not have the answers or resources we need? 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 shouldn’t; after all, it’s important for students to work and earn the degree to the best of their ability. But what if one can’t? How about a trade school? Or a college certificate? Great, but don’t forget, in many cases, a student most likely still needs to meet certain Math, Reading and/or world language 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. Luckily, over time this has become better because now we have Uber’s available–a higher cost, but it is doable. Check…next!
It’s not about me–it’s about my child
How about these counselors? Why do they call themselves, Licensed Professional Counselors (LPC’s) anyway? Many of these questions are geared towards my personal upbringing and family history. By the time they “evaluate” their findings about me, I seem to need some other type of help. 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 unfounded suspicions.
Because parents don’t know what agencies know–they only know what they’re told
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 many can’t for fear of negative feedback or legal challenges–so they don’t. Parentes 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, but so are our sleepless nights. Sharks hover in real life as well our dreams. The only way to get help is to keep on trying–keep making the calls we think we need to make, meet with the people we think we need to meet with, and find people– like us– to talk to. Don’t give up and keep the energy going. Our special children need us and they need us well and attentive.
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