Parenting and Rare Disease: 5 Bonding Activities to Try With Your Child

If you are caring for a medically complex child, it can be difficult to find ways to bond, interact, and keep them busy. Modifying everyday activities based on your child's needs exposes them to activities and helps them improve their skills.

Being creative and fun with each activity will make it more enjoyable for you and your child. Here are some examples of bonding activities I enjoy doing with my son, Raymond:

Spend quality time in the kitchen

Baking has been great for Raymond because it improves his hand-eye coordination, listening skills, and overall strength. Raymond and I started by baking a few small cookies. We have worked on more in-depth things as time has gone on. Raymond has low tone and needs to keep his muscles working, so activities like baking help improve his overall quality of life.

When Raymond was unable to sit or stand on his own, I would place him in a high chair and provide hand-over-hand instruction. If he could not tolerate that or simply was not in the mood, I would sit him next to me and talk to him as I did each step.

Now that Raymond can stand for longer periods of time, I stand him in front or next to me and have him try tasks on his own, guiding him through each step. Sometimes, he doesn't tolerate the hand-over-hand, and that's okay. However, I still encourage him to be involved. Even if it's just sitting in a chair next to me and watching, it is something we do together and truly enjoy.

Put on music

For years, I found us watching the same short mini-episodes of Baby Einstein's "Old MacDonald Had a Farm" on YouTube. It got to the point where I knew we needed a change, so I introduced Raymond to YouTube music videos. 

This has been life-changing for us. Although Raymond is still non-verbal, he does have his own way of communicating. Listening to music and watching music videos has allowed him to express himself – dancing to his own beat, flapping his hands, and smiling as he connects with what is around him. When I can, I hold his hands and have mini dance parties. Sometimes, this can be overstimulating for him, so I take his lead on how we do things.

Encouraging Raymond to interact with music has been beneficial to his overall development. We truly have a great time when music is involved. Whether your child can do things independently or not, music can be a fun way to bring happiness into a room.

Go on a nature walk

I remember telling my mom years ago that my son would never take a nature walk – at least not without that 28-minute show playing in the background. However, I was wrong, and my mom was right. I don't think our nature walks would be a thing without my mom's motivation to continue trying. Nature walks have become a great way for all my children to connect with different parts of the environment and interact with each other and me.

When we are out walking, I encourage all of them, especially Raymond, to use all of their senses:

• Smelling the dampness
• Looking at what is around us (a lot of trees since we live in the woods)
• Listening to the sounds in the sky (often military planes since we are close to a base)
• Feeling the different things that walks bring (relaxation and peace)
• Tasting the snacks we pack to make our walk more enjoyable

Even though Raymond is non-verbal, taking nature walks allows us to step back, connect, and enjoy each other's company through a simple activity.

Play with a ball

Rolling a ball back and forth is one of Raymond's favorite games to play. It allows him to interact with another person, though he often is specific and wants to play with his siblings.

Playing with a ball teaches him to take turns and improves his coordination, balance, and motor skills. His improvement in these few areas has made a huge impact on overall development and has been a simple, fun, and interactive game for all of us.

Create sensory activities and bins

Creating sensory activities and bins at home has been a great way to customize activities based on Raymond's needs and interests while not spending a fortune on toys.

I take toys that he likes, put them in a bin of sand, and allow him to explore things in a new way while slowly incorporating other materials. This allows him to have some familiarity and test out new things in the process. We practice hand-over-hand and independent scooping, pouring, and dumping.

Since increasing the use of sensory activities and bins, I have noticed an improvement in coordination, social skills, and strength. The progress can be slow at times, but the repetition has helped us move in the right direction.

What activities help you bond and improve skills with a child or adult you care for? Have you tried anything that Alex mentions in her article? Share with us in the comments below.