Healing Our Mayo Relationship

It was 2:15 and I passed Tim in the driveway, pausing only long enough to exchange keys and throw the stroller in his car.  His commuter car that fits into the usually packed full hospital parking ramps at the Mayo Clinic much better than the large SUV I usually drive with all six kids in tow.

Our appointment was slated for 2:45, but when I skated into the parking ramp at 2:45 on the nose I wasn’t worried.  I knew that 2:45 check-in really meant 3:00 appointment time and they wouldn’t page Tomass dietician from the floor to the clinic until we checked in anyway.   We quickly went up a few levels and then turned as if to exit, knowing the down-side of the ramp usually had better spots available.  I was rewarded by a spot just a few spaces from the elevator.
A quick zip down to the subway level, across to the correct set of elevators and back up to the 9th floor with time to spare.  As I paused for a moment in the elevator I saw the nervous eyes of families clutching their appointment guides, double checking their arrival time and appointment location.  Maybe holding extra papers from another clinic or a set of instructions for a procedure they would have that day.

In that moment I paused and realized something I’d never noticed before: somewhere along the way, I accepted that I belong here. 

  Caleb has faced many health challenges throughout his lifetime.  He is autistic, yes, but has always had pesky little other issues and many of his struggles are actually from the compounding of those other issues.  For years I have been quietly listening to other mothers of children on the spectrum (or other special needs), family, and friends tell me that I didn’t really understand what it meant to have a child with special needs because Caleb is “so high functioning”. Even when I was sneak washing a particular pair of pajamas, carefully scheduling our days, cleaning feces from every surface in his bedroom, cringing with the medical bills, therapy, and appointments… I listened and believed that I wasn’t “really” a special needs mom.  I’ve lost friends and had to pull our family from activities due to un-willing to be educated people and yet I believed. While our social worker and public health nurse were helping us find extra services and he was being kicked out of a private school I was convinced that his needs didn’t count because they were too little.  He has a little of this and a little of that.  A “little” autism, a “little” anxiety (is there really such a thing?), a “little” sensory processing, a “little” hearing impairment, and the list goes on until it is not so little any longer.  We’ve been through periods of uncertainty when even the doctors threw their hands up not sure what to do next. He’s “fine”.. except when he’s not. This year he started seeing several specialists for care at Mayo and they have done a great job with him.  He's seeing a GI to help with his never ended bowel struggles.  He's seeing a geneticist to see if we can get a better understanding of his hearing loss and possible progressions.  He's seeing a sleep specialist who is working with his trouble falling and staying asleep.  Together they have found a few nutritional deficiencies and other treatments that look promising in helping him move forward.  Tim described it as finally talking with those people who recognize some of the oddball stuff he does and putting things together to figure out what causes it.   My husband and I know his signs and his triggers and we have the best team in place we have ever had to help him.  Life with Caleb is both as calm and as complicated as it has ever been. Last year, Tomas was born prematurely and transferred to the NICU at Mayo.  Although it was a short stay, we lived at Ronald McDonald House and became regulars in the hospital.  When it came time to seek extra help for him with his feeding and reflux issues, we knew where we wanted to go.   When the first appointment they gave us for Tomas was too far away for my comfort, I knew who to talk to for appointment exceptions.  I knew which questions to ask about specialists and additional testing because it was my second time in this boat.  I didn’t want to be there, but I was.  When his schedules grew more complicated, I quickly changed my kitchen whiteboard into something that resembles an in-patient hospital board to track his feeding and medication needs.IMG_1098
Tomas may outgrow his issues or he might not, but I’ve realized that we will do what we do and find a way to make it work either way. As I handed my parking ticket to the attendant and the time flashed on the monitor I smiled, knowing we had been in and out in exactly one hour.  I smiled knowing not to bother upgrading our parking pass because the one time cost would be less than the per visit cost of the permit.  I casually tossed the receipt in the pile for reimbursable and deductible expenses. I smiled and I drove home to my extra-ordinarily special life. A life of which Mayo is a part.

After everything with Siena and then the NICU/ISCN journey, I no longer felt overwhelmed and irritated every time I walked into the building.

Somewhere between Siena and Tomas and the wonderful experience we have had with Caleb at Mayo, they have *fixed* what I couldn't even explain was broken.

Kylee leaves us little notes there and draws sweet pictures to cheer things up.

And I'm ok with that.


jen said...

i have a kiddo with autism, developmental delays (prematurity), adhd, strabismus, and mild congenital hearing loss. when we lived near sacramento, i used to joke that my kiddo had more doctors for just him than most hospitals have on staff.

having said that, you *ARE* a real mom of a kid with special needs even if caleb is more on the high-functioning end in some ways. i saw a fabulous illustration of the autism spectrum here this week:


i think it really explains how each individual can be on the spectrum but have varying strengths and weaknesses.

we have also found that some adhd meds have helped my kiddo out quite a bit, especially with sleeping. it's not the most popular choice and it was a long time before i made the decision to try them, but they've worked out well. i don't know if your sleep specialist has made this suggestion but melatonin might be something to look at? it might help him fall asleep if that is still an issue.

you sound like the perfect mom for him.

Heidi said...

Thank you,

Caleb has actually been on melatonin for 4-5 years now and he still has issues with sleep. It turns out, he has extremely low iron stores causing a restless leg type sleep disruption. He wore a activity monitor 24 hours/day for 2 weeks and it turns out he never stops moving even in his sleep!! We have done other meds in the past as well and they have helped during certain seasons so I always keep them on the back burner when things start to snowball for him.