When I Have to Be One of 'Those Moms' for My Child With a Disability

“One of those moms.”

Oh, how I hate that phrase.  But you know what I am talking about.  The mom who is always calling to complain about why her child didn’t receive something.  That mom who is always asking for something, but not always willing to volunteer. The one who is always sending emails, requesting meetings, and, dare I say it, asking to speak to your manager/supervisor/etc.  The mom who posts nasty things on social media and tags everyone they can think of.  They yell and make a scene in public places.  You know, those high-maintenance demanding moms.

I hate that some days I have to be one of those moms.

I know a lot of parents of kids with disabilities get labeled as “one of those moms.” I can understand how, from the outside, we can seem short-fused and unreasonable. To be honest, there are some that are short-fused and unreasonable (just like in the general population of people).  However, many of us don’t want to play this role. We just feel like we haven’t been given another choice.

So why am I short-fused and unreasonable?  I’m frustrated most of the time. I spend more time making phone calls, sending emails, filling out paperwork, going to meetings and scheduling things than I ever did as a working professional.  Now, I like to think of myself as a smart and capable person. I have a master’s degree and have worked in a few jobs that require understanding complex material (like laws).  However, becoming the parent of a child with a disability and having to navigate a whole new system came with no training, no manual, and no one seems to know the answer to your questions.  It’s infuriating.

Need access to a service?  Here, fill out these 10 pages of paperwork and get letters from a few of your child’s doctors.  Once that is done, you will be denied on day 85 because you didn’t call this other office first to make sure your paperwork was processed by the right people. OK, after five days of phone calls the right people have the paperwork now, but there is an 11th page that was never given to you that needs to be signed.  Since it has been over 90 days since this process was started, you need to start from the beginning.

Could a certain type of therapy help your child? Great!  Bring them to a two-hour evaluation. Listen to all of the shortcomings your child has (yes, I know, that is why they are here). Then a scheduler will call you to book some appointments. You wait two weeks. Maybe the office is really busy. Suddenly it’s been a month and you realize you still haven’t heard back. Finally, you start calling to try to book something, but the schedulers don’t have the right information from the evaluators.  You call back a week later to find out there aren’t any open appointments that fit into the times you have available. Suddenly a few months go by and they finally have a spot for you, but it’s been so long that now you have to do another evaluation.

The first two stories are not mine, but the next one is:

Lyra needs a new walker.  We have had her old one for over two years and she has outgrown both the style and the size.  So I did what any responsible parent would do and called my durable medical supply company (you can’t buy from the manufacturer or online).  I started this process around the beginning of June.  They couldn’t send out a salesperson to meet with us until August.

When they said who they were sending, let’s call her Nancy, I was hesitant.  You see, we have worked with Nancy before and last time she showed up without any materials (not even a brochure to show us sample walkers) and then forgot to order some of the parts needed. However, I was desperate and I didn’t want to be a pain. Plus, everyone has a bad day.  I was willing to give Nancy another chance.

Well, Nancy came to visit in August, and we really just weren’t sure what would be the best fit for Lyra. We decided to wait until Lyra started working with her new physical therapist because the PT clinic had a bunch of walkers Lyra could trial.  Her first appointment was soon, and Nancy told me she loved Lyra’s new PT and had worked with her for years.  The new PT would just need to send an email detailing what walker we decided on and Nancy would start the process.

The first week of September we meet with the new PT and we pick out a walker. Lyra’s physical therapist sends an email to Nancy to which Nancy replies, “Mom (me) decided not to get a new walker, so I will wait for her to contact me and tell me differently.”  The physical therapist forwards me this email.  While I am upset that I have to take extra steps, I try to be understanding.  Maybe it’s a miscommunication? Maybe it’s a misunderstanding?  Those things happen.

I
will
be
patient

I reply to Nancy and keep the PT in the thread.  I explain that she must have misunderstood. We do want a walker, we just needed to pick out the right one. We have picked it out! Please, Nancy, start the process of ordering this walker.  Nancy’s response… nothing. I wait two weeks and reach out again. Still radio silence. After another week has gone by, I start making phone calls. At this point we are in October. I spend hours getting passed from person to person and leaving messages with no one calling me back.  I am furious.  I am frustrated.  I don’t have any other options to get this walker.  This is the only durable medical company that services my area. Finally, I get a hold of the regional manager in charge of my area.  I am officially “Karen who needs to speak to your manager.” I hate being Karen.

Luckily, the regional manager was wonderful.  She set me up with a new salesperson and we finally got the ball rolling.  We are now in the first week of December and I am happy to report that I will be picking up Lyra’s new walker in a few days.  But this took six months.  It shouldn’t have taken six months.  It took appointments, emails, phone calls and plenty of paperwork.  And this wasn’t the only project I have been working on for Lyra.  In fact, I now have a whiteboard to help me track projects.

So next time you see “one of those moms,” try to hear the whole story.  They might be more reasonable than you initially thought.