Parenting special needs children is harder than it has to be. Yes, it’s an extremely hard job, requiring the parent to learn new levels of patience and self-sacrifice that others have no idea about. And the truth is, most parents are willing to do that…there are so many willing to step up and go that extra (long) mile for their special needs adopted or foster child, even those parents who weren’t expecting a special needs adoption.

BUT…it’s all the rest of the “stuff” that parents of special children have to battle through that makes the job darn near IMPOSSIBLE. The parent quickly learns that everyday is a battle. Every morning, you get up (and better arm yourself with coffee, prayer and/or something substantial) because you are going to have a battle on your hands. EVERY DAY!

Many of our children have incredibly challenging behaviors, which complicate things, and sometimes require drastic measures. Living day in and day out with a child who is aggressive and prone to violence is incredibly stressful. Living day in and day out with a child who is non-verbal and can’t express themselves in most ways is frustrating. Living day in and day out with a child who isn’t able to do the simplest of self-care tasks (like toileting, feeding or bathing) is exhausting. Yet there are hundreds of us out here living like that each and every day.

What do we need? A little help! The kind of “help” that parents of “normal” kids often take for granted. We need babysitters (or what is called “respite”) so we can do the “normal” things that “normal” parents do – go to doctors appointments for ourselves, meet a friend for lunch, attend a meeting, go on a date with our spouse. We need education for our child…the kind where the child gets on the school bus and travels safely to a classroom where his educational (academic and social) needs are met and he’s not being ignored, abused, vilified, bullied or passed over. We need our children to be accepted in the neighborhood, at church, in our social circles, at school…and not to be the objects of fear, pity or disgust.

What else do we need? For systems and professionals to stop adding to our burdens. We need Social Services to recognize immediately when an attachment-disordered child has made a false allegation of abuse against one of us…and not drag our emotionally fragile families through prolonged investigations, or worse yet, remove already traumatized children who have lived through several placements from our homes. We need therapists, educators and doctors who can objectively see the struggles and challenges we live with and not attribute those to our “bad parenting”. We did not create the attachment disorder, the fetal alcohol syndrome or the post-traumatic stress disorder in our children…we are trying to love, protect and parent them. We also need insurance companies that will not drag their feet on paying claims the supposedly pre-approved months ago or deny claims that you find out after the fact were paid to others with the same type insurance as you. And, Lord knows, we need financial relief…does anyone outside those parenting special needs children know what it costs to pursue all these therapies, interventions, hire respite providers and private educators…while quitting your job so you can care for the child full-time?

Ok…you, the reader are thinking…someone obviously rattled her cage. They did. Here is the latest in a long line of asinine examples of how not only do special needs families NOT receive help, but we receive roadblocks that make life so much harder than it has to be:

I’ve ranted about our mail order prescription company before. For psychotropic meds (controlled substances) like those prescribed to my daughter, a new script is needed each time (no refills). When I could take that to my local pharmacy, no problem. When I have to mail it in, the company tells me it takes 10 business days to fill. Ok… So, on more than one occasion it has taken more than 10 business days to fill, which has caused me to get a “short run” script from our psychiatrist and run to the pharmacy for a 10-14 day supply. Our latest experience with this was a script I mailed in on June 11, and needed filled by July 3 (when I ran out of the med). The week before June 11 we’d been on vacation and I had failed to send the script before we left. But then, I thought July 3 was far enough off…no problem.

Wrong, there was a problem. I could see it on the company’s website. So I called and asked what to do. The first time they told me it would be shipped by June 27, but when that didn’t happen, I called again (on June 30). I was told to go to the local pharmacy and get a short run and this time they’d pay for it, by sending me a special form to submit (which they haven’t). Meanwhile, I had a paper script for a med I would be running out of July 23. So, given their track record, I mailed it in on June 30, a Saturday. On July 3…the day I frantically ran to the local pharmacy, after having the psychiatrist phone in a 10-day script on Monday, two other things happened. The psychiatrist discontinued the medication I had mailed the script off for on June 30…and the mail order pharmacy filled the paper script, which apparently arrived in their mail that very day! In other words, the first script took 16 business days to fill…and this one took less than one day. So they shipped me a 90-day supply of medications that the psychiatrist just that day took my daughter off of.

If you don’t know, prescription medications are non-returnable…under any circumstances…or at least according to this mail order pharmacy under this circumstance. So we are now $150 poorer with two nice bottles of pills we have no use for. See what I mean about systems making things harder than they have to be?? I was trying to “beat” the system, but ordering in plenty of time, and ended up losing again.
Life for parents of special needs kids is much harder than it has to be…so hard, in fact, that most of us don’t know which battle to take on first…but today I know I have $150 less dollars to put toward helping my child.

And, as Super Dad wryly pointed out, the medication we're "stuck" with isn't one I can take myself to calm my frustration about dealing with the pharmacy! (If we couldn't laugh we'd all go insane...right?)

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