special need highlight: adopting a child with cerebral palsy

At the end of a long road of infertility, miscarriage, miracle daughters, and a Korean-born son, we found ourselves at the end of an adoption attempt, that after 4 years, had resulted in a son forever in his birth country due to political reasons. We were devastated. That long process that ended in heartbreak was not in vain, however. What was produced in our hearts was our Father God’s heart for orphans: especially those hard-to-place children whose needs often seemed overwhelming to prospective adoptive parents.

We chose our agency, and we let them know of a long list of special needs that we might be interested in for our next son. Then we just let things rest. After over 4 years of tirelessly advocating, we were tired, and trusted God to lead us down the path he had for our family. Four months into it, we got a call about a little boy. We reviewed his file, but we did not feel prepared to parent him. We let him go, praying he would have a family soon, and we continued to wait. Three months later, we got another call about another little boy who had cerebral palsy. This may seem funny to you, but this was secretly the need I was hoping for. You see, our neighbors have a son was diagnosed with cerebral palsy as a toddler. We had watched him grow since birth, knew about his therapies, and the life-changing surgery he had had.

The little boy whose file we had gotten had similar needs to our neighbors’ son. After pouring over his file, praying over him, consulting with our International Adoption doctor, we felt comfortable saying yes to adopting him. One thing that really made a difference is that his file was written in such a way that it highlighted what he COULD do, not what he COULDN’T do. We felt like we had a good grasp on his likes, dislikes, personality, life skills, and development.

First time we saw our son

First time we saw our son

SO, WHAT IS CEREBRAL PALSY?

It is a brain injury or abnormal brain development, in utero, during, or shortly after birth, that causes motor delay and movement disorder. There is no “test” for cerebral palsy. CAT-scans and MRI’s may help explain what has happened, and when it happened, but not always. A cerebral palsy diagnosis often follows premature birth. It is often not diagnosed until around age 2, when many children fail to meet motor milestones, such as sitting, balancing, standing, talking, and walking. Some people also have related conditions, such as intellectual disability, scoliosis, joint contractures, or seizures.

Gotcha Day in China

Gotcha Day in China

Because cerebral palsy is caused by a brain injury or abnormal brain development, it varies greatly in severity. It thus affects children differently, according to what part of the brain was affected.

Physicians classify cerebral palsy based on the main type of motor disorder involved:

Ataxia: poor coordination and balance

Dyskinesia: uncontrollable, involuntary movements

Spasticity: stiff muscles or muscles with high tone

There are 4 main types of cerebral palsy:

Spastic Cerebral Palsy: The most common type of CP is spastic cerebral palsy. It affects about 80% of people with CP. People with spastic CP have increased muscle tone. This results in stiff, awkward movements. Spastic diplegia mainly affects the legs, with the arms lightly affected, or not affected at all. People with spastic diplegia often have difficulty walking. (This is the type of CP that our son has.)

With big brother

With big brother

Ataxic Cerebral Palsy: Balance and coordination are the problems that people with ataxic CP face. Ataxic CP causes unsteadiness when walking. They also tend to have difficulty with fine motor skills, such as writing or reaching for things.

Dyskinetic Cerebral Palsy: Kids with dyskinetic CP have trouble controlling the movement of their legs, feet, hands, arms, making it hard for them to walk or sit. Sometimes the tongue is also affected, making it hard to talk, and swallow. A person with this type of CP has muscle tone that can be too loose or too tight, and that tone can change daily.

Mixed Cerebral Palsy: Some people have symptoms of more than one kind of CP. The most common mixed form is spastic-dyskinetic CP.

Cerebral Palsy Treatment

Cerebral palsy is a not a condition that has a “cure,” but please don’t that deter you from considering a child with CP. There are many amazing treatment options for kids with CP. When first home, expect lots of doctor visits and testing. This is necessary to get your child on the way to being his/her best! When our son first came home, we hit the ground running! We used our “paper pregnancy” time to become thoroughly educated about what our son might need once home, and to connect with other adoptive families and families affected by CP for support. Having good health insurance is also important to keep costs down. Know ahead of time what your plan pays for in the way of speech therapy, occupational therapy, physical therapy, durable medical equipment, surgery, and prescriptions.

If your child will be under 3 when he/she arrives home, you will want to be ready to refer him to your state’s early intervention program. This program will be vital in helping your child reach developmental milestones. If your child is over 3, you may want to petition your local school system for services.

Showing off his new wheels

Showing off his new wheels

Since Jaeden came home, we have taken advantage of aqua therapy, special needs karate, early intervention services, services through our school system, occupational therapy, speech therapy, physical therapy, AFO’s, SMO’s night splints, knee immobilizers, and a Kaye walker. He has also had the life-changing surgery, Selective Dorsal Rhizotomy, performed by the world-renowned neurosurgeon Dr. T.S. Park, at St. Louis Children’s Hospital. In this surgery, all the nerves in his legs were tested to see which ones were causing the spasticity. The offending nerve rootlets were then cut, ridding Jaeden of spasticity forever! When Jaeden came to us, he could barely sit up unassisted at 30 months old. He can now sit, stand for 25 seconds unassisted, and can walk well in his Kaye walker. Dr. Park believes that with lots of hard work and therapy, Jaeden will be walking independently in all environments by this time next year! The sky is the limit for him!! Since he came home in June 2013, he has also graduated from speech therapy, acquiring English like nobody’s business, despite a mild bilateral hearing loss. This mama and baba have been busy, but it is paying off! Jaeden is so worth it. He is super smart, and charms all those around him. He has fit in beautifully with his siblings: Brianna, 15, Charissa, 13, and Josiah, 5. He brings joy with him wherever he goes.

I pray that many more families will consider precious children with cerebral palsy.

Jaeden today

Jaeden today

Blessings,
Mary-Elizabeth

Waiting Children with Cerebral Palsy

Wyatt

image_4

This bright 10-year-old is not one to let challenges stifle his smile. This sweet boy always has a smile on his face and is cherished by his caregivers who tell us he’s a polite, strong-willed child who readily shares with others. Wyatt has a normal appetite and has had no serious illnesses since he began living in the orphanage at 5 years of age. His medical history includes a diagnosis of cerebral palsy exhibited by weakened lower limbs. The medical staff describes him as “obedient and sensible”. Under the careful attention of his caretakers he has learned to walk slowly by holding onto rails on the wall or furniture nearby. Wyatt is designated to Dillon via an orphanage partnership, contact them for more information.

Laura

1497756_10201205527361138_279301776_n

Laura is 9 years old, she was born August 2004. She is beautiful and her special need is listed as Cerebral palsy, developmental disorder of language and motion. She is on the shared list and has waited for a family for over four years. Go here for more information on her.

Avery

1545044_10151915333971527_1037764309_n

Three year old Avery is listed with Madison Adoption Associates via an orphanage partnership. He is diagnosed with Cerebral palsy and has had surgery for an inguinal hernia. At the age of 2 years, he could walk while holding onto something. Now he can hold toys with both hands, can play with kids near his bed, and can imitate simple actions, such as clapping and waving goodbye. Usually he plays with toys and blocks in the activity room.

For more information on beginning the adoption journey contact the Advocacy Team.

Comments

  1. We are learning more about CP as a child we are considering has CP and hydrocephalus. All of the information was so great as we do not too much about CP or hydrocephalus. Wondering if Mary-Elizabeth has a family blog to follow?. Thanks:))

  2. I’m so excited to see how much Jaeden has progressed! That’s amazing! My husband and I have been learning about CP because it seems a lot of the kids we’re interested in have CP. It wasn’t a need we were originally considering but now we feel it might be something that’s doable for our family. Thanks for sharing your story!

  3. Melanie Lutes says:

    Mary Elizabeth, what a wonderful testimony! It is so good seeing your little boy walking! So happy for your whole family. You all are a blessing to so many!

  4. Great, informative post! Mary-Elizabeth, I would love to chat with you about the recovery from the rhizotomy, as this is is our near future. Our daughter has a diagnosis of spina bifida but has atypical muscle spasticity as typically seen in cerebral palsy. Thank you for sharing your journey!

tell us what you think...

%d bloggers like this: