World Cerebral Palsy Day is the 1st Wednesday of October each year. In honor of my children who face this every day of their lives, and in honor of "Susy" whom I advocate for, I'm reposting an article that I wrote for another publication several months ago.
In the mid 1980's our family adopted two biological brothers from
the USA's foster care system. Both were diagnosed with cerebral
palsy. Fast forward to 2013 when we first adopted from China,
cerebral palsy was a special need that was familiar to us and one we
were confident in handling.
According to
http://cerebralpalsy.org,
“
Cerebral palsy is
considered a neurological disorder caused by a non-progressive brain
injury or malformation that occurs while the child’s brain is under
development. Cerebral palsy primarily affects body movement and
muscle coordination.“
So while
cerebral palsy is a permanent condition, it
doesn't become “worse.”
My experience has been that
consistent therapy improves skills tremendously.
Everyone is wired a bit differently, and for me, dealing with an
ongoing mobility issue was nonthreatening. Let's be real; as an
older mom (who moves a little slower myself these days) taking a more
leisurely pace to wait for a child with mobility issues wasn't going
to change my life THAT much. I was far more afraid of a life
threatening special need, or one requiring many surgeries and
hospitalizations. Those of you who face those situations every day
have my highest respect. It just wasn't something that I felt
equipped to handle. Our girls came to us at the age of six and seven
years, from the same orphanage, and both diagnosed with cerebral
palsy.
A diagnosis of cerebral palsy can be tricky to understand since it
can present itself in so many ways. The child might merely have
weakness on one side of their body; they could be wheelchair bound
and require help with all of their personal needs, or anything in
between. When you couple a somewhat catch all diagnosis with the
probable lack of stimulation in an institutional setting it becomes
very difficult to know what you may face when your child comes home.
This is the story of our two little girls, close in age, from the
same orphanage with a similar diagnosis, and how differently the
diagnosis presented itself. The diagnosis presented differently not
only because of the severity of the CP, but also in large part due to
how differently they were raised, even within the same institution.
This is also the story of how far someone can advance their skills
when given the chance.
Abigail's long, beautiful hair was the outward evidence of her
favor with the staff. She lived in a foster apartment inside her
orphanage. She spent much of her daytime hours in the physical
therapy room at her SWI. During our process for Abigail we
received numerous updated photos from the SWI, and it was very
evident that someone cared very much about her.
Jennifer's original referral photo looked as if she was a boy.
Like so many of the girls from her SWI, her hair was cut in a short
bob, and she wore the school uniform. She spent much of her time
sitting in her wheelchair, unable to participate in the camps that
agencies held, or the field trips that the more mobile children
experienced. Were it not for other adoptive parents visiting the
SWI, we wouldn't have received even one additional photo of her
during our adoption process. When we visited the SWI and asked
questions it seemed as if our daughter had been invisible. No one
seemed to know anything about her.
“Family Day” was a dramatically different experience for our
girls. Abigail was terrified and came to us screaming, while
literally being dragged by a nanny on each side. Jennifer was
wheeled out calmly in her chair, took my hand and looked at me as if
to say, “What took you so long?”
Abigail refused to let me touch her for an entire week. The only
time I could get near was when I painted her fingernails! Jennifer
pretty much soaked up all the attention I could give her. But once
we arrived home they totally reversed roles. Abigail quickly settled
in to family life, having been part of a family before. Jennifer was
in shock. We witnessed many rages with throwing (and breaking)
things, hitting, biting, and at bedtime she would scream for up to
two hours. This wasn't a normal, “I don't want to go to sleep”
cry, but a deafening, guttural sound unlike any noise I had ever
heard. She had no understanding of a family, no coping skills, and
no means to self regulate. Inside was a little girl who desperately
wanted to fit in and “be like everyone else” but she simply
couldn't find her way through.
Jennifer
has come a long way in two years. While
an occasional melt down still happens, we have learned to watch for
triggers to preempt them. With
lots of love and patience she is learning to self regulate. Her
bedtime screaming routine has long since become just a bad memory.
She has blossomed into a cherished daughter who enthusiastically
takes every opportunity offered to her. Jen's is a moderate CP diagnosis,
presenting with very tight
muscles. She wears knee
high AFOs (orthodics). As of the summer of 2015 she is only using her walker when we are away from home. Her therapist is very optimistic
that in time she will no longer require it at all.. Her incontinence (which
required diapers when she came to us)
ended up being caused by overactive bladder. Medicine taken once a
day has totally made the difference for her.
Her
dream to be “like the other kids?” She
is achieving it through her
determination to keep trying.
I'm happy to report that Abigail
is now a “Mama's girl.” While
Jen prefers to be outdoors
on the swingset or in the
sandbox, Abigail would
rather hang around with me
inside and watch (or help!)
with the housework. She
remains much more timid about trying new experiences. Hers
is a mild CP diagnosis,
presenting primarily as weakness. She walks with a wide gate, wears
ankle high AFOs, and her
speech is very poor. She is extremely bright and has an impressive
vocabulary in American Sign Language which helps us to understand her
better. Her therapist is
optimistic that she has not yet reached her potential with verbal
skills.
Living with cerebral palsy often means
regular ongoing therapy. We are fortunate to be able to schedule
both of the girls at the same clinic at the same time, so our hours
there do double duty! Our girls receive therapy twice a week, and they include Speech, Occupational and
Physical Therapy.
My point? Two girls from the
same orphanage, adopted at
the same time with a similar
diagnosis are as different as night and day. And really, isn't that
often the case with biological siblings also? Our
girls are individuals who
are so much more than their CP
diagnosis. A
loving family, proper therapy, and in Jen's case medical equipment
and medication have changed
their lives. Cerebral
palsy really isn't so scary.
While you may not be able to tell a
child's potential from their file, you can predict that whatever
their situation, their lives will be so much better with the love of
a family and the medical support available in the States. I have
found it (four times over!) to be a manageable need. If you are considering adoption, will you please give "Susy's" file a serious look? She is a gorgeous little girl from China who will be six in November. Her file states her special need as being Cerebral Palsy, but really her biggest need is that of a family!
Her file is on the "shared list" which means any agency can facilitate her adoption. I've spoken with a case manager at WACAP (they handled three of our adoptions and I highly recommend them) and was told that they would give a $4000 grant towards Susy's adoption expenses (they call her Zuza) when using their agency. Please give her a chance!
UPDATE: My advocacy for Susy has paid off, and she has a family working hard to quickly process their paperwork! WE ended up getting our Preapproval from China in December of 2015. We are thrilled that we get to be her parents!
