Special Needs Parenting is hard enough without this bullsh!t

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  • Post last modified:April 6, 2018

I’m venting here because I’m really frustrated and as of right now, all I can do is hurry up and wait.

The boy’s long time psychiatrist’s office is having trouble doing what they say they’re going to do. 

Both Elliott and Emmett are in need of refills on their ADHD meds.  Elliott was just there on Monday evening and I was told the refills would be faxed in first thing Tuesday morning. 

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Well it’s now Friday and it still hasn’t happened yet.  I also didn’t receive the promised phone call that would give me the appointment date for his followup that’s supposed to take place in just over a week at this point. 

Emmett needs refills and well and it hasn’t happened. 

In regards to all three boys, I was told I would get a phone call to schedule their next appointment and that phone call never came. 

All I can do is leave messages because no one ever picks up the goddamn phone.  I tried 3 times again this morning and was disconnected twice, while leaving a message. 

Before anyone decides to be critical of me for not staying on top of this better, you’re right, I should have. 

Here’s the thing.  My life is basically lived minute to minute and I’m constantly having to prioritize and repriortize everything going on around me.

Things fall by the wayside as a matter of survival, not choice.

I have to be able to rely on the professionals in our life to follow through with what they have committed to doing. 

What ends up happening is that I’m waiting for a phone call, while dealing with whatever today’s crisis is or putting out whatever fires keep popping up. 

Pretty soon, it gets lost in the shuffle. 

Again, ideally I would keep on top of them but ideally, I shouldn’t have to. 

Anyway, after the 2nd interrupted attempt at leaving a message, I called back again and was able to leave a rather aggressive but tactful message. 

Now I just have to hurry up and wait. 

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Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Alyssa Rogers Williams

I might have skimmed too quickly but do you ever just get the actual paper script for refills since there are so many Dr visits? That would eliminate relying on so many others.

one of the things our Dr does on visits from our family (migraine meds for me, allergy meds for daughter and blood thinners for my husband, who though in incredible shape/non smoker has had blood clots recur frequently). She asks “are you low on any meds/refills” and we leave with the actual prescription with 4-5 refills *in hand.* Sure, I still use my CVS app to refill and if I’m out of refills I’ll use the app to call my Dr, but I still call the Dr for a heads up. If I don’t see the magical “refill in process” on my CVS app by 3:30 I keep calling, because they close at 5. . And yes, they blame each other: CVS says they’ve faxed the Dr, Dr’s office says they have not. Hence, we get the hard copy whenever possible. They usually work it out and 75% of the time it goes smoothly, but your kids are on meds not to mess with.

Try getting hard copies for refills, then you’ll KNOW the pharmacy has it and can begin the refilling process. It stinks, but it happens to us all.

Kim Gebhardt

I feel like you’ve had this problem with this particular doctor’s office before, or am I thinking of a different office? I would bring this up at the next appointment because the boys’ well-being is at risk. Also, I have a question regarding you living your life ‘minute to minute’. I understand what you mean and sometimes you can have a certain plan or idea for the day and just one thing going astray can ruin it, but unless one of the E’s is home from school, it’s just you and Gavin and he seems to be fairly low maintenance. So I guess my question is, what is so difficult about your schedule on the average day? I don’t ask this as a criticism, I am honestly curious.

Also, I 2nd MB13’s idea on asking the pharmacy to call. That might be the way to get those scripts filled quickly.

Rob Gorski

The pharmacy says they’ve called and faxed repeatedly and never hear back. The doctors office says they’ve never heard from the pharmacy or received any faxes…

I have the same issue with the Cleveland Clinic and the pharmacy, so I’m not sure whats going on.

As I was responding to your comment, the doctors office called and they are working on scheduling all three boys as well as fixing the issues with the refills.

They did acknowledge that there are ongoing issues with their phone system…

No one is doing this on purpose and to say it’s incompetence sorta seems incorrect but that’s probably the closest term.

As for what my day is like while the boys are at school, I have several projects that require my attention, some I can talk about and some I can’t. There are also days where I some try to catch-up on sleep.

You can’t really catch up on sleep but I only get a few hours of restless sleep a night, on a good day. Like most other special needs parents, you have to seize the opportunity to sleep when it comes around because you never know when you’ll have another chance.

Kim Gebhardt

Can you change pharmacies? If you’re having trouble with two separate doctor’s offices, the pharmacy seems to be the common thread. It might be worth trying so you can see if things get any better.

Regarding your projects, what’s the status of Guardian Locate? Launching that should help out financially, right? I know you’ve been working on it for a long time now and I’m sure you’re anxious to get it out there to the public.

Rob Gorski

I could switch pharmacies but honestly, these issues aren’t all that common and logistically speaking, it’s half a block from my house.

MB13

glad it is working now! It would be great if you can change pharmacies as Kim mentioned, but I know that is a pain! One nice thing if you can change – sometimes you get discounts on something else. My supermarket ran a promotion for a while where you could get 25% off your grocery order for switching a prescription to their pharmacy 🙂

Rob Gorski

Thanks…

MB13

Are they new meds or just a refill of the old ones? If they are just a refill of the old ones, you might be able to get the pharmacy to call. Sometimes doctors will pick up for pharmacies when they won’t pick up for regular folks.