Family
A place for posts about our family, our challenges, successes, and everything we do and enjoy. We hope to connect with others who face the same challenges we do and want people to see that they're not alone, that everyone doesn't live perfectly, and that we are all perfectly imperfect.
The Biggest Challenge Our Son Faces with Tactile Defensiveness
Our son has had a lot of different challenges with tactile defensiveness, from being delayed in learning to walk to his not wanting to touch slimy, gooey things; however, the unexpected biggest challenge that we have had for almost fourteen years since his diagnosis has been the difficulty he has with eating.
When our son received a tactile defensiveness diagnosis, we thought it was just a sensitivity to his skin. It took us a while to realize that he also had some sensory problems in his mouth. Until then, I had always thought he was just a picky eater. Once I started paying a little more attention to his eating, I realized that he would only eat certain types of food, and it was based on their texture.
Our son was about 18 months old when we got his tactile defensiveness diagnosis. By that point, he was off a bottle and eating solid foods. He struggled with it once he got old enough to eat baby food. He did not like it. He never took to rice cereal. I could get him to eat a few fruits, but that was it. He ate a little better when he started eating solid foods, but not much. He was a little closer to two years old when we finally realized he had sensitivity issues in his mouth.
When he was young, our son had four main foods that he would eat: chicken nuggets, quesadillas, frozen burritos, and mac and cheese. That was it. I have no idea how or why he ate mac and cheese or the burrito because they are both a little gooey. Eventually, he stopped eating burritos; to this day, I can’t get him to eat any. He would eat a lot of snacky foods like crackers and pretzels. He would never eat yogurt or applesauce. He would look at food, decide it was gooey, and have nothing to do with it. I couldn’t even get him to try something new; he would refuse to put it in his mouth if it looked gooey. He didn’t like the look of sauce on pizza, so he didn’t have his first piece of pizza until he was five or six years old.
As he grew older, getting him to try new foods became a little easier. He eats a lot better now, but he still isn’t a great eater. He never eats fruits or veggies because he didn’t eat them as a kid. Right now, I try to get him to try them, and he will take a bite, but he doesn’t like them. The one thing he will refuse to try, even at his age, is soup. I love to make soup in the winter, but he will not try it. I have tried bribing him, and he still won’t try it.
Eating is such a chore for him at this point in his life. I love to cook, and I love food. I love to try different recipes. However, he doesn’t like to sit down and eat. It is just a pain for him. He picks at his food and takes little nibbles so it can take him a long time to eat.
As you can imagine he is very skinny and we are always concerned about him gaining weight. I always have to ensure he gets enough calories daily to gain weight or at least not lose any. As I continue to work with him on his eating, I will try to share recipes he will eat. He does enjoy chicken, so if anyone has any ideas on recipes he might enjoy, I would love to hear about new recipes!
5 Things No One Told Me About Tactile Defensiveness
Looking back over the years, I realize that there were so many things I had to learn about tactile defensiveness. These five things stand out the most and that I wish I had known from the very beginning.
It’s important to understand that tactile defensiveness is something a person will carry throughout their life. It’s not something that disappears or goes away over time.
When my son was diagnosed with tactile defensiveness, our therapist never explained to us that this was something that he would always have to deal with. He told us what tactile defensiveness was, but that was it. I had to go out to the car and call my husband to have him look up what it meant for our son to be diagnosed. We were young, and this was our first child; I didn’t know what questions to ask. Knowing what I know now, I would have asked many follow-up questions.
We learned quickly after researching that he would have to deal with this his whole life. Our job as a parent was to help him learn how to cope with tactile defensiveness. We were there to help him learn and understand the skills he would need to improve his daily life.
You will spend most of their younger lives explaining tactile defensiveness to others.
No one knew what tactile defensiveness was when we talked to everyone in our families on both sides. Everyone had heard of sensory issues but not tactile defensiveness. We had to explain it to every person we spoke to. When he started school, we would meet with his new teacher every year and explain what he had. In those younger years, he sometimes had trouble with snack time in preschool. He also wouldn’t do crafts if he didn’t like touching the items they used, such as feathers or even the glue he wouldn’t like if it got on his fingers. Once he was out of elementary school, we didn’t need to meet with his teachers. We even had to tell the ladies that would cut his hair because he would always scrunch his shoulders up when they would cut his hair. He did not like the feeling of the hair falling on his face and neck.
Tactile defensiveness is a condition that many doctors are not familiar with.
I was a little surprised that I had to explain tactile defensiveness to every one of his doctors. I had to explain it to his primary care doctor, which is the one who gave us the reference to the physical therapist who diagnosed our son.
We had to explain tactile defensiveness to his dentists. As you can imagine, with his sensitive mouth, the dentist was an issue for several years. Now that he is older, he can handle going to the dentist.
Once our son was diagnosed with ADHD, we ended up going to a specialist to help us with him and to discuss medication. We had to explain TD to him, and I have learned since then that children with ADHD can sometimes have TD.
I have been surprised at how many professionals we have had to explain tactile defensiveness to over the years.
Because tactile defensiveness is not something you can physically see, It is hard to explain to your children and others why and how it can affect their everyday lives.
Since most people have no idea what tactile defensiveness is, it can be challenging for you to explain the symptoms of it to other people so that they understand. Our son couldn’t even walk because of tactile defensiveness. We had to train him to feel things on the bottom of his feet for him to start walking. People would assume he was late learning to walk, but that wasn’t the case.
For my son, explaining why he has difficulty eating has been the most challenging aspect of tactile defensiveness. This challenge is what he has to deal with every single day. And not every day but also every single meal. This one is the hardest because, once again, people assume he is a picky eater, which is not the case. We even had a therapist tell us when he was younger that it was all in his head.
Comments like that were and are very hurtful because it is not all in his head. It is a physical struggle. This is why it is so hard for people to understand him. They think it is just in his head, or he is making it up.
You always seem to be by yourself as a parent and wish someone would understand. His meal times are just one of his daily struggles with tactile defensiveness. There are many meals where he has to have something different to eat because of the texture of what the rest of our family is eating.
The small milestones are the greatest!
I wanted to end on an upbeat note. When your child has tactile defensiveness, no one tells you that the little milestones are some of the greatest joys. When we first discovered he had tactile defensiveness, he wouldn’t put his feet down on anything, not even my lap. The day that he finally stood up on my lap was the happiest moment up to that point. We celebrated even more when he finally put his little feet in the grass. It was the little milestones like these that no one tells you you will be so excited about.
Now that our son is older, the milestones are fewer and far between, but we still get excited and celebrate with him when he has a milestone. Nowadays, it is mostly when he can put a new food in his mouth!!
For those of you who have just received a diagnosis of tactile defensiveness in your young child, I hope this list helps you over the years. Just know that you are not alone in this, even though some days it feels like no one understands!
Teaching Your Child to Keep Their Room Clean
My 12-year-old daughter loves to sit in her room and talk to me at bedtime. She will talk to me about anything and everything that is going through her mind. I was talking to her last night, and she was so excited to tell me she had a blog post idea for me, something she wanted me to write about. She wanted me to talk about how hard she is working to keep her room clean and some of the things we’ve discussed together that she uses to help keep her room clean.
My daughter is working hard to keep her room clean. It is not easy! Not too long ago, my daughter’s room got so messy and cluttered that we had to take an entire weekend to clean it. As we started working on her room, we talked about how much stuff she had, and I had to explain to her that she probably needed to get rid of at least fifty percent of her stuff because she had so much clutter. Surprisingly, she did very well with this suggestion and got rid of quite a bit of her accumulated clutter.
Once we had dusted and vacuumed her room, we returned all her stuff to where it belonged, sat down, and discussed keeping her room clean.
Here is the advice I gave her. Here is my simple advice for teaching your child to keep their room clean.
It is much easier to keep a room clean if you take five to ten minutes before bed and put away all the stuff you got out that day.
Sometimes, she is too tired to take five to ten minutes to put things away each night. Overall, though, she has kept her room somewhat clean. Thankfully, it has not gotten as cluttered and messy as before. I am still able to see her floor after a couple of months.
It is always a work in progress. Hopefully, she will take more time to keep her room clean as she ages. Watching her grow up a little bit every day has been fun. She has started to understand and realize that a clean room makes her feel calmer.
Try this with your children and see if your household becomes calmer!!
Can a Teenager With ADHD Drive?
As soon as my son was diagnosed with ADHD-Inattentive type, my brain had so many questions. One of those questions that always came back to me was whether he could learn to drive, having ADHD.
Can a teenager with ADHD drive? In short, yes! But let me tell you about our experience.
My son turned sixteen a couple of months ago, and I will tell you that the last year has been a whirlwind.
Surprisingly, my son is getting his driver’s license was a lot of work. I think some of it is because he is my oldest, so getting a driver’s license was a new experience for both of us. It was a year’s worth of work for both of us. He had to take the test to get his learner’s permit, drive many hours, take a Driver’s Education course, and take a lot of drives with an instructor.
Before he got started, I always thought that his ADHD was going to be a problem. He wouldn’t be able to pay attention in class or while driving. This was very far from what happened.
He got his learner’s permit very quickly. He just had to take a written test. Getting him to drive the car was the hardest part. And it wasn’t the ADHD that ended up being the problem. He ended up having a great deal of anxiety. Every time he drove, he worried about getting into an accident and wrecking the car.
Even as he got more experience with driving, he has struggled to get over his anxiety. From the beginning, he never enjoyed driving, so getting him to commit to driving was always a battle. Once he got his license and realized how much more freedom he had, his anxiety went down.
In the end, and with much celebration, my son received his license. It was a lot of work to get there, but every child is different, and every child’s ADHD is different. Can a teenager with ADHD drive? In my experience, I know that if you have a child with ADHD, it is possible for them to drive someday. It may not be easy, but they can do it. Just give them lots of encouragement and be patient.
Suffering Through the Pandemic, One Child’s Journey
How many of you are so sick and tired of this pandemic? I know I sure am. I will not say everything about the pandemic has been horrible. In the beginning, I enjoyed how slow life became. I loved all the canceled activities and us being able to be home as a family. We were able to spend a lot of quality time together.
But, the pandemic wasn’t all fun and games for our family. We had our struggles. Online schooling was brutal. Some days it would take my oldest son five or six hours a day to do his school work. There were lots of tears from my daughter, who was in third grade. My preschooler did pretty well, but somedays, it was hard to get her to sit in front of the computer.
My third grader is the one that struggled the most with everything. She did well at first; she got up and did her homework without question. After a couple of weeks, she started to regress. Her birthday is in April, and she had a hard with her birthday because we were stuck home. We couldn’t plan a party or do much of anything. It was a little underwhelming. I tried my best to make it a good day, but it was still hard for her. The day after her birthday, she came into my room at bedtime and started crying. She said she wanted everything to go back to normal. That night she laid by me and cried herself to sleep. That is when I knew we had a big problem that we needed to address.
I knew she was having a hard time; there were signs. She is a social butterfly and thrives on going to school and seeing her friends daily. She made a couple of comments that she missed being with her friends. The biggest thing is that she started sucking her thumb again. She sucked her thumb when she was a baby and hadn’t sucked it for years. It was a little bizarre that she would start sucking her thumb again. She wanted us to lay with her at night until she fell asleep. It became exhausting because some nights, she would take a long time to fall asleep.
I knew that night she came into our room crying and that we needed to take action quickly before it became worse. The next day we contacted her school counselor. We were able to set up online sessions with him every week. He gave us a lot of ideas on how we could help her.
Two strategies helped her. The first strategy that helped was having a worry box. She got a shoebox and had to decorate it any way she wanted. After decorating it, her counselor told her it would be her worry box. She would have to write anything she was worried about on a piece of paper and put it in her worry box. Writing her worries down and putting them into her worry box helped her a great deal. Once she gave her worries to the worry box, she wouldn’t worry about them anymore.
The second strategy we used a lot for her anxiety was “Count 5”. When she had anxiety, she would use Count 5. Here is how it works. First, you count five things you can see, four things you can feel, three things you can hear, two things you can smell, and one thing you can taste. Once she did this, it would help her relax. Like I said before, we used this one quite a bit. Count 5 is the one strategy that helped her the most.
Meeting with the counselor helped a great deal. She eventually stopped sucking her thumb, and she was able to fall asleep on her own. We met with the counselor weekly until school got out for the summer. She still struggled through the summer. In our town, we could go back to in-person school in the fall. Once she went back to school full time, she improved significantly. When she was able to be back with her friends, she completely changed. It was amazing to watch her transform once she was able to go back to school.
I am grateful that we had the resource of the school counselor. If we didn’t, I think things could have turned out differently. Even though she has improved dramatically, she is still not the same girl from before the pandemic started. We still have times when her anxiety and fear take over. But now that I know she can suffer from depression and anxiety, I will always keep a close eye on her.
