Parents of children with a range of, and multiple, disabilities share some advice on how to best care for your child
Chatting to parents of children with a range of physical and multiple disabilities, I asked them to share some tips on parenting. Here are some of their responses:
The more independent you can make your child, the better
The world is a tough place. If we bubble wrap our kids, it will just make coping in the “real world” more difficult later. We are not going to be around forever. We need to give them coping skills and strategies.
Be kind to yourself
So often all of our focus and energy are on our children, and we have very little time or energy left for ourselves.
I always think about the flight attendant’s speech about first putting on the oxygen mask before helping our kids. If we don’t look after ourselves, we are going to burn out and not be the best parents for our kids.
Include your child in everything
Many parents hide their child, or leave them at home rather than taking them out in public. So often we want to protect our kids from people staring, and inappropriate comments and questions, but we have to get our kids out there.
The public needs to see that they are part of society and have the right to be out and about. If my kid makes you uncomfortable, that is your problem. Not ours.
I went to a moms and babies group, and was amazed to see a mom with a son with severe multiple disabilities. She was so confident and seeing how she was bonding with her boy just holding, singing and rocking him brought me to tears.
She wasn’t hiding him. The other moms were so kind and non-judgemental. I learned a big lesson that I should just get out there with my kid.
Be your child’s advocate
We have to fight for our children. The world is not going to. While we have come so far in terms of creating awareness and fighting for disability rights, we still have a long way to go.
Let your child have a voice
So often we want to speak on behalf of our children. When they are small that is our job. When they get older, we need to give them tools and confidence to fight their own fights. I am talking about equipping them to ask for help when they need it. Not when we think they do.
They need to be able to speak to their teachers and share what they need in the classroom, what helps them, what works and what doesn’t. If we don’t, what will happen when they are adults?
Push your child to their limits
Our children have additional challenges, including getting sick more easily, tiring more quickly, and needing more support.
Sometimes we try to overcompensate for all their struggles and try make things easier by giving in and not pushing them academically.
For many of our kids, it is just their physical bodies that might be affected. They need a push and be challenged. We have to encourage them to persevere and not give up. But, I know this is tough in reality. I don’t always get this right.
Think out of the box
You can have 30 kids all with cerebral palsy in one room and you will have 30 different kids needing 30 different things! Our kids are all unique and while we can get ideas from what other parents are doing, at the end of the day, our kids are all different.
That is okay! If you look at our kids without disabilities, they are also not all the same. So, why do we expect our kids with disabilities all to fit into one box?
Work with their strengths
Find out what fuels, motivates and drives our kids. Know your child’s strengths, interests and abilities and use these. So often we focus on what they can’t do. What they find difficult and struggle with.
This is normal, but can make us feel down and negative. It can be exhausting. Focus on what they can do. Keep a diary so you can go back in dark times and see how far your child has come. Sometimes you can’t see it as you are so in it!