“They’re doing just
fine.” It is something I have heard numerous times in the past 4 years and
something I really wish people would stop saying. The fact is, while it may
appear my children are doing just
fine, they are not. I stated a long time ago that we wouldn’t know the full
effect of prematurity until the boys get older. In my heart I knew I wouldn’t
be able to breathe easy until both boys were in elementary school. We are
slowly starting to see signs that both Jayden and Matthew did not escape their
rocky starts to life unscathed. Each seem to have some lasting, possibly long
term consequences of their lives being started too soon.
Jayden puked for the first 18 months
of his life. He received both feeding and speech therapy through early
intervention and “graduated” at about 19 months. From 19 months to 3.25 years I
fought to get him qualified once again for speech services. Finally last
November the speech therapist through Kaiser told me “yes, he is moderately
delayed and does qualify for services”
and I cried. Not because I was upset he was delayed, but because someone
finally heard my concerns and my son would finally get the help he needs.
Currently he is receiving speech therapy every other week until a spot opens up
for weekly sessions. In the spring I brought him back to early intervention to
see if he would also qualify for speech through them. They looked at our
history of evaluations and services and one woman proclaimed “wow, you have
been asking for help for years”. I wanted to scream. I told her “I have been banging
at your door for 2 years begging you to help my child. Only to be told ‘he is
delayed, but 20%, not 25%. So we can’t help you’”. Given the evaluations from
his current speech therapist as well as the results from their own assessments,
he was finally qualified and will start receiving speech during preschool this
fall. He has so many speech sound errors that when combined his intelligibility
to an unknown listening is low.
In addition to the articulation disorder, Jayden’s preschool
brought to our attention some sensory issues they are noticing with him.
Specifically chewing/putting everything in his mouth, constantly touching
things/people, He is always taking his shoes and socks off, HATES his hair/head
being touched (although we are making progress with hair washing), and has
difficulty sitting still even for a few minutes. I have long noticed some of
the behaviors they mentioned and brought them up at his last EI intervention in
March 2015. They said he did show signs of sensory issues, but again, not
enough to qualify. Now that he is over the age of 3, his sensory issues must
have an impact on his ability to access the learning environment, which according
to Child Find, they do not. So while his IEP will have sensory accommodations,
he will not receive occupational therapy.
And while I believe there are
some sensory issues at hand, part of me has a hard time sorting those behaviors
from “typical” 4 year old boy behaviors. Where does the 4 year old boy end and
the sensory issues take over?
Matthew has a whole other set of
issues that are both a result of his prematurity and also mostly likely an
unfortunate mash up of my husband and I’s genetic material. His food (peanuts, lentils,
and black beans) and environmental allergies are sadly a result of his DNA of
which he would most likely have even if he had been born on time.
With regards to his prematurity, Matthew has some gross
motor delays is pointing to a mild cerebral palsy diagnosis. As the months
zoomed by and he still wasn’t making much progress on the walking front, I
called and scheduled an early intervention evaluation for him. His pediatrician
wasn’t concerned but that mom voice inside of me was starting to get louder. I
have been concerned about stiffness in his legs since he was about 6 months old
but have consistently been dismissed. He was found to be significantly delayed
in his gross motor skills by Child Find and we were assigned a physical
therapist who meets at our house once a week. Within 10 minutes of our first
session she was able to confirm my suspicions about the tightness in his legs,
specifically his left. She also commented on how his gait is off when he does
walk. I had mentioned that his left leg seemed to swing spastically around when
he was pushing something (the only time he would walk at the time). When she
asked about his birth history and his APGAR scores (1 at one minute 6 at 5
minutes) she asked if I knew that those were poor numbers. I looked at her and
said “of course I do. Why do you think I am concerned about his movement?” She
also asked if I knew anything about cerebral palsy. After a
few months his physical therapist grew concerned about his oral motor skills and
excessive drooling. She suggested we have an occupational and speech therapist
evaluate him while he is still under the part C umbrella. The occupational
therapist recommended once a month sessions while the speech therapist will be
coming once a week. Because we have added services instead of removing them, I
contacted his pediatrician and asked whether we should pursue a formal cerebral
palsy diagnosis. My concern is that after he turns 3, without a diagnosis, it
may be much harder for him to continue to receive services under part B. She was in agreement and we are now waiting
for an appointment with a pediatric neurologist.
There are times when I find myself wondering what life would
have been like had the boys been born on time. Would they have the struggles
they have? Would I have to know terms like “age inappropriate sound errors” and
“spastic gait”? At times if feels like the weight of our world is too heavy to
carry alone. Yet it becomes infinitely heavier when family and friends make
comments like “they’re doing just fine” or “it could be worse”. It makes parents like me feel even more
isolated and alone. Of course I know it
could be worse. Jayden was born at 31.5 weeks gestation. We are extremely lucky
that speech and sensory issues are all we are dealing with. Matthew, while only
being 5.5 weeks early, was born “floppy, lifeless, and blue”. If we are in fact
dealing with cerebral palsy, it is a mild form that doesn’t seem to affect
cognitive or fine motor skills. I am acutely aware it could be a whole lot
worse. Our reality however, is that they
are not “doing just fine”. I have fought to get them the services they need and
they have fought so very hard to get where they are today. They still have a
ways to go though. So the next time a parent of premature infant opens up to
you with their concerns, do not dismiss them with comments like “they’re doing
just fine” or “it could be worse”. Listen to them. Ask questions like “what
specifically makes you think there is an issue?” and “how can I help you ?” and
realize just because the child is out of the hospital and appears to be doing
well, looks can be deceiving. Understand it may take years to see the long term
consequences of their lives being started too soon.
