How to tell your tell child they are not getting better

One of the toughest things other than being by my bedside through countless surgeries and putting my life in the hands of a physician that my parents had to discuss with me was that I was not going to get better. Most parents of disabled children will need to have this conversation because kids will be curious and want answers! It is natural to want to avoid this is a conversation but unfortunately, this is not something you can or should avoid. Your kids deserve an explanation and avoiding it just because you don’t know how your kids will react will affect their mental health. Regardless of whether or not you want to talk about it your kids will wonder and avoiding the topic is doing them a huge disservice. You can avoid the topic all day long but at the end of the day, your kids will still have questions whether or not you are in denial. No parent wants to have this discussion with their child but some of them have to so here are my tips on how you can get through that discussion and be a role model for your kids!

Don’t lie- Lying to your kids and telling them that Santa Clause is real or that the tooth fairy will come is one thing but lying to them about their disability is something totally different! If it ever comes up in a conversation and your kids start asking questions you should never lie because it will be more damaging than if you were to just tell the truth. If you don’t be honest about your child’s disability somebody else will and in my experience when strangers talk about disability they aren’t nice about it. If you lie to your kids about their disability it may work when they are little but when they get older they will have questions and wonder why you lied. They may not forgive you for it so do yourself and your kids a favor and tell the truth!  My parents have never told me I was going to wake up one day and be cured and I am glad they didn’t because I don’t know how I would feel about that.

Highlight their strengths-  When you are a young disabled child and you hear the words “permanent disability” often times all you can think about is all the things you can’t do! When you are disabled there will be some things you can’t do and you want to make sure your kids understand that but there will be plenty of things you can! You want to make sure you highlight all their strengths because sometimes when you are disabled and struggle with so much it’s easier to see your weaknesses than your strengths. Disabled people have strengths and weakness just like abled people do and your job as a parent is to emphasize their strengths because that is what will help them learn to embrace their disability.

Reassure them it’s not their fault– When you are a young disabled child you may have a lot of questions! Why am I so different from my friends? How did I get this condition? Will, I ever get better and did I do anything to do deserve this? It is totally normal for your kids to blame themselves for there disability but as a parent, you want to try to help them understand that what happened to them is not their fault. Some things just happen to some people and not to others and we don’t know why! Disabled people are just different but there is nothing wrong with us.

Be mindful of your terminology- If you want to make a positive impact on your child you have to be mindful of your terminology when discussing disability. Kids pay close attention to the language you use (even more so than adults do) and if you are not mindful of the language you use that could have a  negative impact on your child. Avoid words like wheelchair-bound, crippled or retarded because they will have a very negative impact on your child and it will become difficult to help them see the positives of living with a disability.

Comfort- Remember that they are just kids and are going to have as hard of a time processing this as you are!  Telling your child that they have a permanent disability may be a very emotional time for them and that is why it’s so important that you listen and try to understand where they are coming from. It’s okay to feel pain but it’s not okay to blow off your kid if they have questions because your scared and don’t know how they will react! You are learning just as much as they are and during this time your child needs you more than ever. Comfort them and try and explain their situation in a way that is truthful and reassuring.

When you are the parent of a disabled child it is natural to want to fix things but often times you can’t. You don’t want your child to believe you can or that you have all the answers. The truth of the matter is you don’t have all the answers and acting as if you do when you don’t is more damaging than saying I am sorry I don’t know. Your child doesn’t need you to have all the answers they just need you to be there for them. Disability is not a scary as most people think and your job as a parent is to help your kid see that even though it may be hard. If you are struggling getting involved in a community with other disabled people may help your child finally see that having a disability isn’t so scary! Finding friends when you are disabled is more difficult than if you were abled and could be all your child needs to take that next step towards embracing their disability. Get involved! Parents of disabled children how did you talk to your children about disability?

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4 thoughts on “How to tell your tell child they are not getting better

  1. Thank you, I’m glad you enjoy it! You probably still have a few years before she asks anything but no worries as long as you are honest about it I am sure she will understand because you are learning just as much as she is.

    Liked by 1 person

  2. My daughter is 4 and has two shunts for her hydrocephalus. She hasn’t really asked about them yet, but I hope that when she does, I’m able to explain them in a way that is truthful yet reassuring.

    I love your blog btw 🙂 very insightful

    Like

  3. This is a very helpful article, Sarah. It is a topic that many parents want to avoid. As you say, the truth is the best and only way.

    Like

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