Advice for parents of kids with Cerebral Palsy, from someone who actually has Cerebral Palsy
1. As quickly as possible, get the child in a Montessori-style stander for even a few minutes a day after diagnosis.
My parents were super badass, advocating for their kid without the Internet, and the thing they did well is they employed a LOT of Montessori techniques - sensory play and routine at my level and size to help develop independence. I recommend the method altogether, along with Waldorf, to apply to your needs at home.
What they did NOT use when I just got diagnosed around the age of 1.5ish is a Montessori stander (also called a stepup or learning tower), and this would have been so beneficial. They're very simple, independent-use, and a lot more comfortable than typical medical standers, and a child can use them whenever they want for however long - just grab the bar and crawl in, stand up, drop down and crawl out. No strapping in, and the child develops strong hands from gripping the bar and a strong core from balancing themselves and catching themselves when they fall.
2. If a doctor suggests leg braces and you do not want to risk the expense, suggest trying barefoot shoes or boots instead.
Braces were never helpful for me, and VERY expensive for my parents - tens of thousands of dollars in cost AFTER insurance and hundreds in gas money. They caused more injury because I could not feel the ground beneath my feet when I walk and my feet and legs were still confined and could not move naturally. I twisted my ankle SO MANY TIMES. What worked for me was being barefoot and walking barefoot as much as humanly possible.
Barefoot shoes are a recent innovation I wish my parents had. Your child needs to develop strong feet and active, responsive nerves in order to walk well, and this is how. Get your child in them from when they're a toddler, supplement with comfy work boots like Docs for long distances as they get older, and they will be comfortable in them by the time they are school-age, when you need to make the decision about walking versus mobility aids for school.
3. Ask their doctor to check magnesium, calcium, and Vitamin D levels regularly and when one is low, supplement all three to reduce muscle spasticity and constipation, and help strong bones.
This is just something I'm learning as an adult. I am chronically Vitamin D deficient, chronically constipated, chronically spastic. Magnesium and calcium need to be supplemented along with Vitamin D in order to work well, and they reduce spasticity and make stools softer. If your child is colicky or gassy or seems to have weak bones or pain, talk to a doctor about a supplement regimen.
4. Three words: youth. yoga. class.
Get this child into yoga as QUICKLY as possible, as often as possible. Toddler yoga is popular for a reason. Whether you can teach them or not, integrate it into their system. Go to a 6am class as a family if you can bear to get up that early. Yoga teaches emotional regulation, trusting and THEN testing your own limits, strength, resilience, practice, and is a safe form of exercise for most people at a young age. If they decide to do deeper research into yogic medicine, massage, and diet practices as they get older, it can act as a supplement to doctor's advice they can have agency over. I started doing yoga and meditating from the age of 8 and it is BY FAR the most helpful aspect of my daily routine. It ebbs and flows FOR SURE, but the important thing is they understand how it makes them feel good and are patient with themselves when they cannot practice.
5. Do not be afraid of mobility aids, or focus too much on a progress narrative.
If your child is experiencing pain, the first option, if they are walking full-time, should be part-time mobility aid use in addition to physical therapy, NOT an invasive surgery. A few hours in a wheelchair per day is NOT worse than months of increased pain and potentially years of recovery that may not even reduce pain in the end. Walking is not the be-all, end-all, and your child's pain-free happiness and wellbeing are most important.
Wheelchairs pay for themselves within a year or two with good insurance, and the quality of life changes they bring people who have previously hit walls (like myself) are IMMEASURABLE. It can stink to give up things we love, but there are always new hobbies in the world, and many sports are adaptive. It's okay that disabilities get better and worse, it's not their fault, and there will always be new, fun things to do. This is life, this is the real world, this is a grown-up problem too, and we need to adapt and be patient with ourselves.
6. Check for hypermobility beginning around puberty age.
This is the age when doctors begin suggesting surgery. if your child is hypermobile and has stopped growing, it will show on a simple test. surgery, pain meds, and other CP-specific interventions will be less effective if the child has HMS, and treating both at once becomes the goal. I didn't know I had HMS until I was 22, and it's relatively common to be a combined type and reach a breaking point in the early 20s and THEN get a diagnosis. I wish that pain on NO ONE. Make your doctors aware.
7. Understand how CP works, keep up on the research, and get your kid involved in the disabled community.
If you don't know any disabled adults, find some. You've already found one (go you!) and I am SO happy to entertain messages from anyone. Staying involved as much as you can with scientific and disabled community will allow you to have the most up-to-date information possible, and decide what anecdotal advice from disabled adults might be helpful or harmful.
I wish you luck, and thanks for reading this far!
