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10 Ways to Help Your Child With Cerebral Palsy, From an Adult With CP

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Whether your child has just been diagnosed with cerebral palsy or you’re navigating the challenges of parenting an older child with CP, you may wonder how best to support them.  Here are 10 ways to help your child with cerebral palsy (from someone who has CP herself!)

1. Have your child begin therapies as soon as possible.

Make sure that as soon as your child is diagnosed (or before, if possible), you get your child assessed for the therapies they need.  If your child begins physical, occupational or speech therapy early, they’ll build on their physical progress and begin to establish new neural connections. Putting your child with cerebral palsy in therapies doesn’t reflect negatively on you as a parent; it shows how much you care about their quality of life.

2. Explain cerebral palsy to your child on an age-appropriate level.

Eventually, your child with cerebral palsy will reach the point where they notice differences in the way they move and will likely have plenty of questions for you. Explain CP to your child in an age-appropriate way that answers their questions but doesn’t frame their feelings or experiences in a negative light.  As your child grows, you can go more in-depth about what cerebral palsy is and use science to explain how it affects them, but when they first ask questions, keep your explanations as simple as possible.

3. Connect with adults with cerebral palsy.

One of the most invaluable things you can do as the parent of a child with cerebral palsy is to connect with adults who live with CP.  Whether you have someone with cerebral palsy in your circle or your child is the first person with CP you’ve met, engaging with adults who have cerebral palsy can reassure you that your child will live a fulfilling life.  They can also provide a blueprint for some of the struggles your child may face and offer advice on how to handle potential challenges in the future.

Start looking into online groups where parents can connect with adults with CP.  If you bond with an adult friend with cerebral palsy, as your child grows, they’ll have a role model to look up to, a sounding board for challenging days and a sense of empowerment in knowing they aren’t alone.

4. Regularly check in with your child’s support team.

Your child may see a wide variety of therapists and specialists, especially if they’re school-aged. Ask for updates about your child’s progress and clarify your child’s academic and therapy goals so you know how to support your child at home. If your child has an IEP or 504 plan, make sure you come prepared with any questions you may have and ensure their team has a unified plan to provide your child with the proper support. Knowing that everyone’s (mostly) on the same page will give you room to breathe.

5. Avoid framing disability in a negative light.

If your child is newly diagnosed or struggling right now, you likely feel sad, frustrated and helpless. As your child grows, your sadness will likely subside, but your child may take on some of those feelings when they encounter cerebral palsy-related challenges.  When your child expresses frustration with being “different” or not being able to do everything their peers can, remind them it’s OK to talk about their feelings and reinforce that they may have some skills they’re working on, but they have plenty of strengths too. Name some specific skills or talents your child has so you both can admire what they can accomplish with their body.  If you take a strengths-based approach, your child will develop higher self-esteem, which will serve them well in life.

6. Answer siblings’ questions about cerebral palsy honestly.

You may fear the day when your child’s siblings start asking questions about the differences they see in your child with cerebral palsy, but as long as you’re open and honest, you’ll handle those difficult conversations like a champ. Often, young children don’t have the vocabulary to describe what they see, so they may use words like “wrong” or “weird” to describe your child’s cerebral palsy symptoms. Gently explain that their sibling’s brain doesn’t always send the right signals to their body, and reframe any “negative” remarks in order to normalize cerebral palsy. If your child uses mobility or communication aids, be sure to explain why in kid-friendly terms too.

7. Don’t use disability slurs.

As a parent, your language matters, especially to your child with cerebral palsy.  Disability slurs are commonplace, but the words you say casually may feel hurtful to members of the disability community. Research words like the “r-word” and “spaz” to learn more about how they’re often weaponized against people with disabilities, and commit to unlearning any inclination to use them. Removing words from your everyday vocabulary is challenging; but it’ll make a world of difference for your child and their siblings. That way, if your child ever hears language that makes them feel bad about their cerebral palsy, you can remind them that those words are unkind and don’t represent the amazing person they are.

8. Reinforce the benefits of your child’s mobility aids (and let your child beautify them!)

If your child uses mobility aids, they may reach a point where they absolutely despise them. As a parent, you might feel like getting your child to embrace their mobility aids is fruitless, but don’t be afraid to reiterate how they help your child. If your child has more energy or less pain when they use a mobility aid, remind them of how their mobility aids help their body feel more comfortable. If your child likes that they can walk, run or navigate the world more quickly when they use mobility aids, use that to fuel their motivation to utilize them. Show your child photos of people who use the same mobility aids so they can see they aren’t alone.

You can also make mobility aids more appealing by allowing your child to decorate them to match their style. Let your child decorate their wheelchair, walker or leg braces with colorful duct tape, ribbons, bows or stickers. They’ll be much more willing to use their mobility aids if they look “fun” instead of “medical.”

9. Join a group for parents of children with disabilities.

If you sometimes feel like your friends with able-bodied children don’t fully understand the nuances of raising a child with cerebral palsy, seek out groups where parents of children with disabilities can connect. Seeing parents with children of all ages will give you an idea of how to handle challenges your child with CP may face as they grow up, and parents of older children can support and advise you through each stage of the journey.  You may find that regardless of the diagnoses that made your friends parents of children with disabilities, you bond with them more strongly than you do with parents of typically-developing children.

10. Remind yourself that you’re an amazing parent (even when it doesn’t feel that way).

Moms are often hard on themselves, but navigating life with a child with cerebral palsy can take doubts about your parenting abilities to the next level. Even on the days when your child is frustrated with their physical challenges or you feel exhausted after a day full of their appointments, remind yourself that you’re an incredible parent. You fight to help your child progress and feel included, you manage a full schedule of therapist and specialist visits, and you give your child plenty of love and validation. Even on your most difficult days parenting your child with cerebral palsy, you are doing enough, and your child loves you. Give yourself a pat on the back (or a piece of candy or a warm bubble bath) to show yourself how incredible you are. You support your child best when you love and care for yourself!

Getty image by Mladen Zivkovic.

Originally published: March 12, 2021
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