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Cheryl
and I met with Rose’s team of teachers and therapists to review her
progress and update her IEP (Individual Education Plan) for the upcoming
year. We had early copies of some of the plan drafts which helped
prepare us for the meeting, being able to review ahead of the meeting and
prepare a few comments in advance has worked well for us.
That and, more importantly, we are fortunate to have a very
friendly and supportive school environment for Rose.
The school has been very positive about responding to Rose’s
needs and our suggestions have been few and well received.
I
remember a few conversations in particular, mostly about issues that went
beyond the bounds of the traditional classroom.
Mrs.
R, Rose’s classroom teacher, commented on how Rose was still in
pull-ups. She thought she was
definitely ready to make the leap to underwear.
She commented that Rose was using the bathroom in the classroom on
a fairly regular basis as the year had gone by, Mrs. B, Rose’s physical
therapist, chimed in, she thought Rose was ready as well.
She thought that if we started soon, Rose would certainly pick it
up over the summer and be ready for the start of four year old pre-school
in September.
Cheryl
and I listened and promised to consider their advice and give it another
try. Rose was certainly showing herself to be more and more
capable over the last few months. At
the end of last summer, Cheryl did make one attempt to make the leap to
big-girl underwear with Rose. It
was right after our lives were beginning to settle down, just after
Rose’s return to the PICU. Rose
had some success but eventually a series of wet bottoms and wet couch
cushions and wet spots on the carpet and various wet beds as she played
her way through our house wore Cheryl down.
After a week of tireless changing and cleaning up, mostly by
Cheryl, we tired out and gave in, Rose was back in pull-ups for the start
of her three year old pre-school year.
In hindsight, we weren’t fully recovered as a family and we just
weren’t up to the challenge. Now, with a little encouragement, and revitalized patience,
we could see Rose more clearly and realize that she was ready.
Mrs.
B also commented on Rose’s most recent illness and how unexpectantly
hard it had hit Rose. At the
end of the week long spring vacation Rose had come down with a mysterious
bug or virus. Her temperature had shot up, she was extremely tired and lost
her appetite. She had no interest in doing anything except cuddling with
her mom or dad. Memory of her
heart arrhythmia from last summer had us all more than a little nervous.
Repeated checks by Cheryl and her stethoscope showed Rose’s heart
rate was elevated to the 130 beats per minute range.
Her heart rate hadn’t hit the 162 beats per minute
arrhythmia-tripping threshold but we were more than concerned.
Over the course of more than a week, Rose’s fever and heart rate
sometimes calmed but only briefly; only barely responding to frequent
doses of children’s Ibuprofen.
After
several trips to our family doctor, we finally gave up waiting for Rose to
recover on her own. Rose had
already developed two antibiotic allergies (amoxicillin and zythromax) but
our concern for her prolonged loss of appetite and energy eventually
overwhelmed our fear of over-using antibiotics.
And despite the well meaning intentions of Rose’s doctors to
advise us that even though they couldn’t diagnose what ever it was that
Rose had, it didn’t appear to be something that should respond to
antibiotics, as a group we couldn’t watch Rose’s heart race at over
130 beats per minute for another day, fearing that another fever spike
would send Rose’s heart rate too high.
On our third visit, with Cheryl and I doing a very poor impression
of calm but concerned parents, Dr. Li prescribed an antibiotic for Rose.
That evening, within hours of just her first dose of medication,
Rose’s symptoms amazingly cleared.
She was still tired and drained but her fever was gone for good and
her good humor and personality came back.
Cheryl
and I talked about her quick recovery not making medical sense, but both
of us still believed is was far more than coincidence.
Never under estimated the healing power of the right medication at
the right time. Despite Dr.
Li’s contention that antibiotics couldn’t work that fast.
Rose’s recovery was remarkably quick.
So after another full day at home of catching up on her meals and
her rest, Rose was back to school for the first time in 2 ½ weeks,
looking a little frail, having lost a vital few pounds off her light, less
than 30 pound frame.
All
of Rose’s teachers and therapists had missed Rose dearly during her
extended absence, with her week and a half illness tacked onto her week of
spring vacation. They were
surprised at the sight of Rose’s tiny frame looking noticeably thinner.
Mrs.
B commented at the PPT, “She really lost a lot.
It took a while for her to get it back.”
And then she made a leap that surprised me.
“That definitely convinced me that she needs therapy during
summer school.”
I
was surprised. I had thought
that this was a for-gone conclusion but apparently these assessments have
to be carefully considered each time on their merit.
The coverage for the summer school session is somewhat resource
limited, with the focus being to provide services necessary to ensure no
significant loss of performance on Rose’s part, more of a temporary
maintenance approach versus the normal school year attitude of pushing for
progress.
The
bus-riding issue came up again, Mrs. D, the school principal, broached the
subject with a little good-natured teasing.
Cheryl and I listened but hesitated.
We only live a short, five minute car ride from Rose’s school and
we are fortunate that Cheryl is home and available to drive Rose.
The short ride for Rose, and the direct, frequent contact with
Cheryl has with the teachers and therapists have been a nice benefit.
We mentioned that we were uncomfortable with last years bus route
that would have had Rose riding the bus for up to 30 minutes with only one
other student and driver as a companion.
The ride to and from school seemed like a very dull and drab and
disproportionate 60-minute experience versus Rose’s normal exciting two
and a quarter hours of school and therapy time.
Rose had ridden the bus once last year, delays enroute had caused
her to get home late. By the
time Cheryl went to help her out of her car seat, Rose was fast asleep.
I
admit the ‘discussion’ that night was not one of my better moments.
I was still charged and off balance from the revisit to the PICU
less than a month before. Over
the course of this last year Cheryl and I managed to have many more
balanced discussions on the topic. We
often recalled and compared Erin and Katie’s preschool experience
relative to Rose’s. They
had gone to preschool fewer days a week than Rose and had always enjoyed
the luxury of a short car ride back and forth with their mom.
When the time came to start riding to bus to kindergarten, they had
excitedly and easily made the transition to riding with a busload of
neighborhood friends. Rose
had seemed pretty adept at picking up the necessary skills to help her
through any social situations, much like Erin and Katie.
I think Rose already understands and appreciates everything that
goes along with a big yellow school bus.
I am hoping that her kindergarten school bus rides are an inclusive
as her classroom and I don’t think she needs a year or more of riding a
bus to preschool to prepare her.
Mrs.
D listened to our resistance again and then offered a compromise.
She would check the bus schedule at the start of the school year.
She thought the bus route would take the bus past our house near
the end of its route, leaving Rose only a short ride to school.
Cheryl and I agreed to wait and reconsider when we heard more.
I do feel very fortunate that the most controversial topic we are
dealing with at the PPT’s is whether or not Rose should ride with mom.
Much like our Birth-to-three experience.
Rose’s preschool teachers, therapists, principal, receptionists,
and parents of other students have all been wonderfully supportive, a
positive source of support and encouragement that has helped Rose and all
of her family.
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