Tuesday, February 5, 2019

When A Special Needs Parent Fall's Into A Hole

I had to chuckle a little when I saw this quote come up in my FB feed. I think it accurately describes what we special needs parents feel at times. Our lives are so complex and so confusing that those who haven't walked this road must wonder at us sometimes! 

Even as I chuckled, I had to admit it was 100% spot on. For many of us, our children's disabilities are hidden and no one knows what goes on inside the walls of our homes. Explaining a complex, invisible disability is hard. I often find myself lacking the words to adequately convey my child's needs and end up sounding like an over protective mom.

As you all know, taking a day off work won't fix the problem, it might not even help the problem. If you could take ten years off and still receive a paycheck so you could be with you child 24/7 you would most certainly make some progress.

Doctor's are a necessary part of this journey but too many of them don't have the time to spend individually with their patients to really learn what is happening. It is much easier to prescribe a medication, send the child home and have the parent call if there are problems. And trust me, our prenatally exposed children are so complex that there will be problems. The parent has to decide if they are giving the medication a fair trial, if the child is reacting to the medication,  if it is due to a previously unknown trauma trigger, or could it be that this new med doesn't mix with the other medications he is taking? The doctor may have answers or he may not. Prenatal alcohol exposure means our child's brain may react in any one of a hundred unusual ways. Then there are the new behaviors that pop up and you have to figure out if the new medication is causing it, or has the medication helped relax the child enough that he is able to expose another layer of trauma? Other doctor's take one look at the child and say, "He is fine, you just need to be firmer with him." Still others say, "He is too young to be exhibiting these symptoms, are you sure that is what is happening? Perhaps you are only imagining things?" There was a time we had so many doctors, therapists and medications on board that things were absolute chaos. We ended up eliminating them one by one and starting back at ground zero to try to make sense of things. It would have been so nice to have a professional who truly understood our child(ren) and would have sorted out the mess, but unfortunately there wasn't anyone with those credentials who could help us as we didn't meet certain criteria and/or hadn't gone up the necessary rungs of the ladder in the correct order so we didn't apply.

Behavioral services are rife with loophole's. You think you have your I's dotted and your T's crossed only to find out that they can't help you due to budget cut's, time constraint's, age, diagnosis etc. etc. It is maddening to fill out reams of paperwork only to discover you have once more reached a dead end. They push you off to another department or another colleague and, I suspect, breathe a sigh of relief that you are no longer their problem.

Nobody has money for the services our children need, I admit their diagnosis cause them to be a bottomless bucket of needs. It isn't their fault, they didn't ask for this, but the fact remains this is the reality the child/parents face. The supports, schooling and therapies our children need are astronomically expensive, leaving family struggling. Parents see how certain things could help their child, but can't afford them. 

There are always charities who help with such expenses, but there are more needs than charities. Applying for charity aid requires more paperwork. More explaining, more defending and more questions until you wonder if it is worth it, beside's there is little hope that you will actually receive the help you need because there are thousand's of people applying for aid.

I have found that knowledge of the prevalence of FASD is still new enough that there aren't as many services available. If my son had autism we would be able to access many services that are currently beyond our grasp due to his diagnosis. 

Then come your friends who get it without you having to explain a thing. When you simply say, "It's been rough today," they smile, give you a hug and reply, "I understand," and drop what they are doing to help you out. And it means so much because you know that their plate is every bit as full as your own. Having friends and family who care is vital in providing the courage to get up, dry your eyes and try again.

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*I couldn't find who wrote the above quote, but if anyone knows contact me and I will give credit to whom it is due.

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