Children’s Cerebral Palsy Movement loves speaking with families in the Cerebral Palsy community who work hard every day to prove the CP is just a diagnosis, not a destiny. We recently spoke with Michelle Jones about her son Oliver. Michelle’s story is beautiful, and Oliver is incredibly inspiring. Thank you Michelle for sharing your story with the community!
Tell us about 4-year-old Oliver, what type and level of severity of Cerebral Palsy does he have?
Oliver has spastic quadriplegic cerebral palsy. His gross motor skills are mildly to moderately affected. He can walk independently with the support of ankle-foot orthoses and has been making some nice progress learning to go up and down stairs. His fine motor skills are more severely affected, particularly in his left hand, but he does use that hand to stabilize himself. For example, if he’s standing at a table playing with, say, a toy car, he’ll hold onto the table with his left hand and use his right hand to roll the toy car on the table.
Tell us a little bit about Oliver’s birth and how did your family deal with the diagnosis?
When I was 27 weeks and 6 days along in my pregnancy, I became ill and went to the hospital, where I discovered that I had pre-eclampsia and HELLP syndrome. Oliver was born by emergency c-section a few hours later, weighing only 790 grams, or about 1 pound 12 ounces. His early birth was shocking and scary, especially considering that my husband and I were in Germany at the time, on what was supposed to be a brief visit. (We had to extend our stay until Oliver could safely fly to the United States, where we were living at the time.)
About a day and a half after Oliver was born, he had a bleed on the right side of his brain. When I asked the doctor what that meant for his future, he said that Oliver may have some difficulty with fine motor movements in his left hand. So, from very early on, my husband and I were aware that he could have a motor problem as a result of his brain bleed—in other words, he could have cerebral palsy—and we were looking out for signs. We saw the first sign when Oliver was about 5 or 6 months old, when he would bat at toys with his right hand but not his left. By the time he got his cerebral palsy diagnosis at 13 months old, my husband and I were ready for it and relieved to get it, because we felt that it could open doors to receiving more support.
Michelle, you have a background in biomedical research, were you familiar with HELLP syndrome at all, or CP, or Epilepsy?
I had heard of all of these conditions, but my knowledge was pretty limited prior to my diagnosis of HELLP syndrome and my son’s diagnoses of CP and epilepsy. I’ve learned a lot about CP and epilepsy these past few years, and I’m sure that as my son continues to grow, I’ll continue to learn more and more about these conditions.
As the parent of a child with CP, what was/is your biggest fear? How did you overcome that and who was your biggest encourager?
My biggest fear has been just a general fear of the unknowns concerning my son’s future. Will he be able to live independently? Will he be able to speak? I wouldn’t say that I’ve completely overcome this fear, but I will say that it helps for me to think about where Oliver is now and how far he’s come. When he had his brain bleed soon after birth, he also became very, very sick with neonatal sepsis. We weren’t sure he’d live. Sometimes when I’m feeling fearful about the future or down about the extra challenges that come with being a parent of a child with special needs, I think back to that time right after he was born, and then I think, Wow! He’s alive! And he’s walking! And he’s going to preschool! And he’s happy! And then I feel really grateful and just really lucky to have him in my life.
As an American, living in Amsterdam, are there resources you feel like you are benefitting from by being there, or missing because you’re not in the U.S.?
Despite the name of my blog—In Amsterdam I Am (www.inamsterdamiam.com)—I’m actually living outside of Amsterdam, in South Holland. My family has definitely benefitted from some of the resources available here. For example, it’s common for Dutch toddlers to attend a play group without their parents a couple mornings per week—sort of like a “pre”-preschool. In Oliver’s case, because he has cerebral palsy, he was able to attend a therapeutic play group at a rehabilitation center two mornings a week, starting at age 2. There were about 8 kids in his group, all with varying degrees of disability. They participated in activities, such as songs, led by teachers and received their weekly or twice-weekly therapies. Oliver received physical, occupational, and speech and language therapy. The therapeutic play group was really nice in that it gave Oliver regular opportunities to be around other children and it gave me regular opportunities to have a break from taking care of him, get some work done, and recharge.
There have also been some financial benefits to living here. Health insurance is free for kids, and the coverage has been good overall. My husband and I have had to pay very little for Oliver’s medical care, despite him taking daily medication for epilepsy, having had several brief hospital stays, and having had several pairs of expensive ankle-foot orthoses. I feel quite thankful in this regard. Coverage for his therapies is not as good but is still decent. We also receive a quarterly child benefit payment from the Dutch government, which all tax-paying families with children in The Netherlands are entitled to, but we receive double the usual amount because of Oliver’s disabilities.
One of the biggest things we’re missing from not being in the U.S. is access to a wide variety of services in English. For example, there are a limited number of speech and language therapists here who will provide their services in English. Also, I get the sense that the U.S. education system does a better job of including children who have disabilities with their typically developing peers. Oliver is currently in an academic setting with typically developing peers, which has been really beneficial for him, but such settings would be more difficult, if not impossible, to find in The Netherlands as he gets older. For these and other reasons, my family plans on moving back to the U.S. next year.
Where do you see a shortfall in research or assistance for families with CP?
In my experience—and this could just be because of where I’ve lived (The Netherlands now and Baltimore, Maryland previously)—there has been a lack of support in the form of local support groups on CP or, more generally, on physical disabilities. I’ve joined some local Facebook groups on autism because even though my son isn’t suspected to have autism, there is some overlap between his special needs and those of kids with autism, and the groups can be a good source of information about local resources for kids with special needs.
What is the biggest challenge you face in caring for and advocating for Oliver?
One of the biggest challenges for me is that Oliver sees a lot of specialists—developmental pediatrician, rehabilitation doctor, orthotist, ophthalmologist, physical therapist, occupational therapist, speech and language therapist, and special education teacher and teaching assistants—which at times means that I get a lot of advice on how I can help Oliver at home. The advice is always well-meant but can sometimes feel overwhelming. I used to think that I needed to try to implement all or at least most of the ideas at home, but that was unrealistic and stressful for me. I’m now trying to do a better job of filtering the advice and figuring out which ideas I can realistically implement, keeping in mind that Oliver and I also need downtime in order to recharge.
As parents of children with CP, we can often work tirelessly to make sure our children are getting the proper necessities to thrive? How do you balance out the time for your own mental health? What would you say to other parents of children with CP?
I feel like I’m a work in progress on this, but lately I’ve been trying to simplify my life by saying “no” to things that I can say “no” to—for example, saying “no” to being a member of the Parent Committee (similar to a Parent-Teacher Association in the U.S.) that I was on at my son’s school last year, and quitting an after-school physical therapy session for Oliver that was no longer working out for us. By saying “no” to what I can, I’ve become a little less busy and stressed, and I have a little more time to focus on things that are good for my mental health, such as writing. Also, my husband and I recently hired an extra babysitter, which has allowed the two of us to go out on a more regular basis. This has not only allowed us to spend more time together, but also, when we come back to Oliver, we feel more refreshed as parents. To other parents of children with CP, I’d just recommend doing things on a regular basis that help you feel mentally healthy, whether that means going on regular walks by yourself or with a friend, watching TV shows on Netflix, reading novels, meditating, or whatever. It’s important for you and your family that you do things that you enjoy.
You describe Oliver as a sweet and happy little boy filled with curiosity and joy? You must be proud that he is not letting his syndrome limit his spirit?
Oliver is indeed a sweet, happy, curious little boy. A life with CP is the only life he has ever known. He hasn’t lost anything; he’s only gained more and more independence over time, which feels wonderful to him! It’s wonderful to see how proud he is of himself. Going on walks outside is one of his favorite things to do, and it’s now something that he can do without always needing to hold onto my hand. We’ll be walking outside, holding hands, and suddenly he’ll let go of my hand and take off in a fast walk, squealing with delight at this fun new skill!
And yes, I am definitely very proud of him! He’s come such a long way since birth in his development of skills across all domains—physical, cognitive, social, etc.
Do you have any advice for other parents who are raising children with CP?
My advice is to enjoy your child! Do things with your child that are fun and silly, even if they’re not therapy-related. It’s okay for not every moment to be focused on therapy.
Are there any programs you feel are missing on the physical side for children with CP?
I can’t think of any at the moment. I think there are a lot of great physical therapists out there and a variety of programs such as hippotherapy and aquatic therapy that can help children with CP improve their motor skills.
Is there anything you have seen or heard about that you would like Oliver to participate in to help overcome any physical obstacles?
I would love for him to try hippotherapy when he’s a bit older. I’ve heard that it can really help with core strength, which in turn can help with fine motor skills such as writing. Horses are Oliver’s favorite animal, so I’m hopeful that hippotherapy is something he’d enjoy.
I’ve also heard about some intense methods for encouraging usage of the non-dominant hand of people with CP, such as casting the dominant hand. I’m curious to know more about these methods and whether they might be appropriate for Oliver in the future.
If you could share a message with everyone, what is one thing you’d like the world to know about Cerebral Palsy?
I’d like the world to know what cerebral palsy is and what it isn’t. It’s a physical condition in which a person has difficulty making controlled movements, and it’s caused by a brain problem, often a brain injury, that occurred in utero or around the time of birth. It’s not anything other than a physical condition. Sometimes the initial brain injury can cause additional problems, though, such as visual, cognitive, and/or communication problems.
More children are stepping out and being advocates to raise the awareness level about CP, especially on social media, where you are very active in the Cererbal Palsy dialogue. Would you hope that Oliver embraces that role some day?
Only if he wants to. I hope to respect and support him whether he chooses to raise awareness about CP or to lead a more private life.
Is there anything else you’d like to share that you think would be helpful to other parents or families dealing with this diagnosis?
In my experience, the thought of my child potentially having cerebral palsy was scarier than the reality of him having it. While there have certainly been challenges to raising a child with cerebral palsy, my life isn’t miserable because of it. In fact, in many ways, it has been enriched: I’ve developed a greater compassion for people with disabilities and their families, and a greater understanding of some of the issues they face. Plus, it’s been a joy watching my son with cerebral palsy learn and grow.
Anything else you would like to share???
Thanks for reading a bit of my story! If you’d like to read more, please visit my blog at www.inamsterdamiam.com, and feel free to connect with me via Twitter (@MLJonesWrites).