Perfectly Imperfect Family

I am sure there are some of you reading this who are wondering what tactile defensiveness is. It is a term used to describe someone very sensitive to touch. As a result, someone who experiences tactile defensiveness is much more sensitive to touch than usual.

Our son, who is 14 years old, has been diagnosed with tactile defensiveness. He received his diagnosis when he was 18 months old. As parents, we became concerned that he wasn’t walking or trying to walk. It also concerned us that he would pull his feet up to avoid standing when we would try and have him stand up on our laps. Also, when we would try and have him stand up on the ground, he would do the same thing. He would never let the bottom of his feet touch anything and do everything he could to avoid it!

My husband and I asked our family doctor about our concerns, and he referred us to a physical therapist. When we went to the physical therapist, our son was diagnosed five minutes into our appointment. It was extremely quick. It surprised me, but the therapist immediately knew our son’s diagnosis as he watched our son’s behavior! Our son avoided physical contact because of how things felt on his skin. The therapist explained it like this to me. He said that when you cut your fingernails too short, the skin under the nail gets exposed, and it feels weird. He said that is the feeling my son has all over his body.

After I learned what it was, we realized that there were signs of it from the day he was born. He would always cry whenever we would change his diaper. He would also cry and scream whenever we bathed him, and I would rub lotion on him. He hated that.

He also didn’t like to touch things with his hands. He didn’t want to touch anything slimy or gooey. We would have him play with shaving cream or pudding with his fingers. He hated this and didn’t do very well with this one.

He was never a great eater either. When he got a little older, maybe age two or two and a half, we realized that he had tactile defensiveness in his mouth. He hated baby food. He hated fruit or veggies. He liked more solid things, like chicken nuggets or quesadillas. His eating to this day, ten years later, is still our biggest challenge. His list of foods that he will eat is minimal. And when he does eat, he picks at things and puts a small amount of food in his mouth. Eating for him is a chore. I am always trying to find something that he will eat, and I get frustrated when he doesn’t like most things I make.

Tactile defensiveness is something our son will have to deal with his entire life. He has just learned to live with most of the things he doesn’t like to touch. Some things will always be a challenge for him, mainly his eating. Now that he is getting older, there are just simple things that you wouldn’t think about, like face wash. Just washing his face is a struggle. We quickly learned that he could not use the foaming face wash! There are just so many tiny things that pop up as he gets older that we work through. He is a great kid and works through everything so well.

So, where are all my people out there who have someone with tactile defensiveness in their lives? I would love to hear from you.

After our son was diagnosed with tactile defensiveness, we had much to learn. As parents, we needed to understand what tactile defensiveness was. My husband nor I had ever heard of it before. We also needed to know what we could do at home to help him. We had to educate our families on what it was also. No one in our families had heard of it either.

Our number one concern after his diagnosis was helping him to learn how to walk. It took us almost five months to achieve this goal, from the diagnosis to his being able to walk on his own. We took these steps as parents for him to learn to walk.

1. Physical Therapy

We would go to physical therapy regularly. We would never have known what to do if we hadn’t kept going. There were so many different activities at physical therapy that they would do with our son. I can’t remember everything that they did, but the one thing that they used was hanging beads. All they would do is have our son put his feet under these hanging beads, and they would make them swing across his feet. At first, he hated this, but eventually, he got used to it. When we went to therapy, they always gave us this to do at home.

2. Brushing His Feet

One of the primary activities the therapist would have us do at home was brushing our son’s feet. I know it sounds a little weird, and you are probably wondering what that is. Our therapist gave us this little sponge that was soft on one side, and on the other side it had tiny bristles. All we would do would take his feet, and with the bristle side of the sponge, we would brush his feet. We would constantly brush up and down across the bottom of his feet. He did not like this feeling at all. It took a couple of weeks to get used to the sensation on the bottom of his feet.

3. Going Barefoot

All we did was take him outside in his bare feet for this one. We would have him touch his feet on different textures. We put his feet on the cement or in the sand. We would try anything that we could think of that would feel foreign to him. The one he hated the most was the grass. It took him a long time to be able for him to be comfortable touching the grass with his feet.

4. Using a Walker

The last thing that the therapist had us do was use a walker. He needed the walker to get strength in his legs. You have to realize that he had never stood up on his legs at this point in his life. When moms take their babies and hold them up on their laps and stand up and you make faces at the baby while you are helping them stand. My son never did that. You never realize how that tiny little thing was such a big deal. Since he had never stood on his legs, they were weak. We used the tiniest little gold walker you would have ever seen. It only took him about a week to learn how to use the walker, and then he was off. We couldn’t slow him down after that. He used the walker for a couple of months.

After months of doing all of these things, our son finally started walking independently. It was the best day when he could finally walk without any help. Walking hasn’t been his only setback. He had to learn how to touch things with his hands as well. Eating, to this day, has been and continues to be the biggest obstacle. Please read my other posts are the strange things we would do for him to get used to touching things and eating.