Adopting a Child with Cerebral Palsy

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!

 

The Whole-Brain Child Workbook

This book IS actually a workbook, complete with room to write one's responses after thinking them through. It refers numerous times to the book “The Whole Brained Child” which makes perfect sense, but which I was unaware of when I requested to review the workbook. Still, there is much to be gained in using the workbook as a standalone. Also, when referring to significant quotes from the main book, it does replicate them within the workbook to bring us up to speed.

The workbook begins with a description of left brain (facts) and right brain (emotions) and the goal of helping your child to use BOTH sides of their brain – their whole brain – to process their thoughts and responses. The first step towards this goal is for us, the parent to evaluate how WE respond to the child. Then we are shown how to connect with our right brain and redirect with our left brain.

Numerous “big feeling” situations are suggested and we're invited to look at various options to help our child through them. We're also invited to look at how effective our typical response is. Whole brain strategies are suggested along with discussions and some hands-on projects to help your child understand the concept of the “upstairs” (rational) and “downstairs” (reactive) brain functions.

We're called to be aware of explicit memories (conscious recollection of a past event) and implicit memories (expectations based on past happenings) in order to help our child overcome problematic auto responses. Ways are suggested to help a child talk through these memories and there are even several ideas for games one can create to work through these feelings.

We're called to look at the significant people in our child's life and the effect they have on them. Are there any actions we should take based upon these reflections?
 
One of the final thoughts is to look at our family “fun factor.” Often just taking ourselves less seriously helps where the child is concerned!

This is a book where you will want to pick and choose activities. Some of the deep breathing and imagery were a bit much for my particular tastes, but there are lots of ideas to be found here and I think you'll find many of them helpful. From my viewpoint of parenting children from “hard places” I plan to implement several of their ideas.

Attachment Book!

I am so excited to have found this book!  This is a book that your adopted children from hard places can relate to!  It is the story about a little porcupine whose mother cannot take care of her any more (we never find out what exactly happened to the mother) and is adopted by a bear family.

Porcupette is very afraid that the bear family might go away and not come back also, and in her fear she gets all prickly with her new adoptive family.  Time after time Mother Bear is patient with her, goes after her when she runs away, and still loves her even as she is having to pull quills out of her own mouth and paws.

There is a good message in there for we moms to help us understand why our little ones get so "prickly" and there is a good message in there for the children that as they let their guard down and learn to trust they can find the happiness they are craving.  It is a wonderful picture of  attachment in an adoptive family.  Can I give this one SIX stars out of five?  I loved it so much!

Attachment Help!

I had the opportunity to review the soon-to-be released book Games and Activities the for Attaching With Your Child by Deborah D. Gray and Megan Clarke.  You probably recognize Gray as a popular author in the adoption community. She has written several titles having to do with adoption, trauma, and attachment.  She is joined in this book by several others whose work specializes in attachment.

This title is a practical handbook!  It begins with helping us to understand the value of attachment and how it in turn can contribute so much to other brain-based functions like controlling impulses and the understanding of the overall picture in life.  This is followed up by showing us the value of imagination and play and how it affects a child's development.  

After we are given the background as to WHY play is important the authors then treat us to a multitude of games and activities that we can do with our children to help promote attachment.  The ideas are well laid out, first by ages and then with chapters that show us how to use play as an attachment tool for connecting the entire family and helping siblings to build attachment.  Each activity specifies any supplies needed and suggests a time frame.  The authors even go beyond and give additional ideas for children whose background requires them to approach the games and activities in a different way or through a slower approach.  There is even a chapter on activities to help with mood and flexibility!

Even though I'm a mom with over three decades of experience, I found some new ideas and fun things to try with my children recently adopted from a Chinese orphanage. Some of my personal favorites were a new play on Row, Row, Row Your Boat, Who Is in This Family, and the (Sibling Only) Forts.

Whether you have a child newly home or several children that you are still working with to form a strong family unit, I believe you will find several ideas in this book to help in your task.  Check it out!

** I received a complementary copy of this book in exchange for an honest review. **

Mission Accomplished

If you've been a reader of my blog for any time you are aware that Jennifer came to us with an extreme case of medical anxiety.  She informed us early on that "Doctors hurt me."  Merely driving BY a medical facility caused her to panic and SCREAM, much like an ambulance siren! 

Sometimes it is a difficult balance to guard against further psychological trauma, be watchful for attachment issues (and things that could upset the attachment) and still get our children the medical attention that they actually need.  The doctor at the CP clinic has wanted an MRI of Jen's brain for many months.  Since it wasn't something urgent it has been put on hold until I felt Jennifer was attached well enough to trust me with it, and until she wouldn't totally freak out when we walked through the door. She has done so much better when seeing a physician lately that it seemed reasonable to try getting the requested MRI.

Jen cannot hold still for any amount of time so an MRI with sedation was required.  Our local Children's Hospital is fabulous with really tending to the child's needs overall.  They explained to her what was going to happen this day.  They took the time to allow her to smell the different "flavors" of gas that she could have, and even inquired as to the name of the little stuffed doggy friend that came to the hospital with her.  Jennifer was allowed to sit on my lap while they administered the sleepy gas.  She panicked a little when they applied the mask, but she dosed off pretty quickly.  I was called back to recovery when she had just started to wake up.  We went home shortly thereafter.  At home, Jen was treated to a lazy day and exclusive rights to picking the movies.

It has been a week since the procedure, and I've been watching for signs of regression but she seems to have taken it in stride. I'm so happy to have reached the place that Jennifer appears to trust that I'll make the right choice for her.  This is such a HUGE breakthrough for us!