Wednesday, February 24, 2016

This Special Needs Mom's Daily Schedule

I've toyed with the idea of sharing what a day looks like at our house, and decided to just go for it.  This was Monday, and while this particular Monday had an extra appointment thrown in at the end, that isn't atypical.  There are the regular, recurring appointments, and then the frequent specialist visits we deal with.

5:30am: Ryan wakes up.  On Monday mornings he works from home from in the mornings because Pip goes to a therapeutic preschool program, where he gets PT, OT, and Speech/Feeding in a three hour drop off program.

6:30am: I wake up, forego a shower, and prep everything for the day as quickly as I can. This means packing lunches for 3 kids, making sure we have water, formula, diapers, extra tube supplies in case of an emergency, etc. ready for the day.  I also pack Pip's little backpack, which he takes with him, with a bottle, applesauce, and extra outfit, water, and anything else they want with him that week.  

7:30am: The kids all wake up.  Mercy (7) dresses herself, Gilead (6) needs several reminders, but gets it done in the end.  Abel (4), who is on the spectrum, needs maximal direction and still can't fasten pants or get his compression shirt on himself.  Once Pip is up we disconnect him from his feeding pump and tubes, change him, change the dressing at his tube site, and administer his meds.  Now that he's awake and I have access to his pump I prep it for his morning therapists.  This involves opening a new feeding back, loading it into his little backpack, priming formula through his pump, and making sure all of the settings are correct.  The process takes about 10 minutes.  In the meantime, Ryan puts Pip's car seat in his commuter car.

8:00am:  I leave to take Pip to his therapeutic preschool program.  Ryan is left to feed the other three, comb their hair, etc. and get them to school by 9:15.  This is not as easy as it sounds when you have a child on the spectrum who requires full guidance to get these things done.

9:15am: Ryan and I meet in the school parking lot to switch cars.  I go home for an hour and a half and madly do as many dishes and as much laundry as I can in an hour and a half.

Pip plays at the table during a feeding while I do dishes on a morning he doesn't have therapeutic preschool.

11:20am:  I pick Pip up from therapy/preschool and get updates from his speech/feeding, occupational, and physical therapists.  Then we head to Abel's preschool to pick him up at 12:00pm.  Next we get Gilead at 12:15pm.  The boys eat a packed lunch in the car on the way to therapy.

1:00pm:  Gilead and Abel have therapies until 2:30pm.

3:30pm: Mercy has a GI appointment to keep up on her trouble with neurogenic dysmotility, which we're told is likely a result of a mitochondrial disease.  I mention that she's also had several bouts of the "stomach flu" recently that have increased in intensity, but nobody else has caught.  An hour later we leave with a diagnosis of Cyclic Vomiting Syndrome and three new prescriptions.

5:30pm:  We get home.  I haven't been on top of things enough to have a month's worth of freezer meals or whatever stashed away in a long time, so I frantically try to think of what to feed my starving family.  I start in on a from-scratch stir fry.  It's both economically difficult and nutritionally difficult to eat pre-fab meals when you have food allergies in the house.  In the midst of preparing dinner Pip is due for a feed, so he needs a bottle, and then it needs to be poured into his pump and he needs to be set up with that.

6:30pm:  Ryan works on getting the kids ready for bed.  I work on yet more paperwork until I start reading to them at 8pm.  Most of the time Ryan does the reading while I switch to laundry or dishes and have a bit of "alone time."  By now, since it's the end of the day and everybody's tired, we're usually into meltdown time, too.  Those of you with children on the spectrum know that the meltdowns we're talking about aren't typical preschool meltdowns.  By the time the kids are in bed, we're sucked dry.

8:30pm:  The kids are in bed.  I do more paperwork.  Ryan works on dishes.  At 9pm we call it quits so that we can actually see one another a little bit before we go to bed.  Tomorrow we'll wake up and have a very similar day.  And we'll start it with dishes in the sink, laundry on the couch, and stuff on the table, because we quit at 9pm the night before, if all goes smoothly.  

This week our Saturday morning will consist of taking Mercy in to have fasting labs drawn to check for metabolic problems.  Seattle wants them before seeing her, and GI here wants them before starting her on preventative meds for cyclic vomiting syndrome.

The first week of every month we get our medical supply shipment.  Roughly a dozen boxes filled with formula, syringes, feeding bags, venting bags, extensions, etc.  It takes approximately 3 hours to properly put it all away.  Sometimes 4 by the time we break down the boxes.

This week alone we will have had GI, PT, OT, Speech, Feeding, and Developmental Disability appointments. Plus lots of phone calls.  I often get phone calls during other phone calls.  And I have three stacks of paperwork pending.

I lived life before special needs, and it was different.  Even when we were "busy," the pace was much, much slower.  As the parent of children with developmental and medical needs, there's a constant tension between meeting their needs and maximizing their potential and not going completely crazy.  I don't think I'm there yet...

On Looking Good

I sit down with yet another stack of paperwork, and a tear slips down my cheek.  I've already been to three appointments with my children today, one of which brought yet another diagnosis, and I just don't feel like I can do it anymore.

But we don't look like we're falling apart.  In fact, I hear at every turn that we look so good.  And I am thankful.  I shudder to think how overwhelming this would all be if Pip weren't at a baseline.   However, I'm apparently good at unintentionally looking more together than I actually am, which makes answering questions like "how are you?" feel like a huge dilemma.

When I'm asked how I am, there are two options before me.  I can go with "fine," like the majority of good Americans, and people can take from that what they will, or I can answer honestly with "tired," "overwhelmed," "scared," or whatever is most appropriate at the time.  Then I get to watch the listener wrestle with the obvious contradiction between how I look and what I just said. 

Life as a special needs mom is a unique kind of exhausting.  I read once that it isn't as easy as we make it look, and that sounds so....conceited.  However, I really believe it's true.  There's a lot that happens behind the scenes that nobody sees.  And quite frankly, when we aren't looking "good," we're so far beyond good we aren't out--unless we're at the hospital or some such.

We've adapted to tired, and overwhelmed, and just plain so exhausted we can't see past our tears.  I try to remember that all of the best intentions are being laid forth when I'm told I look "good."  That it doesn't invalidate anything that I'm feeling.  But I wonder if I'm this exhausted and feel like I'm accomplishing nothing, when will I ever do anything that matters?  I see other special needs moms being support brokers for other special needs families.  They're working a job.  Or getting another degree.  Or volunteering for church ministries.

I'm not doing any of that.  I'm surviving.  On minute, one hour, one day at a time.  From where I sit, this doesn't feel good.  It feels like failure.