Hand to Hold's Official Blog: Written by Parents for Parents

Meeting Sun & Sand with a Sensory-Challenged Preemie

As a full-time working, professional mom, I cherish every single second I get home with my little guy. Our time together is what gets me through those long, hard days. I often times catch myself glancing at the clock, keeping a countdown, like a schoolchild in class anxious for the Friday afternoon bell to ring. While I absolutely love his in-home daycare provider, I too want to be able to share special moments with him one on one.

It’s July, it’s heating up out there and summertime has officially arrived. Kellan loves to be outside but has severe sensory issues, as preemies often times do. The sun hurts his big blue eyes, the grass bothers his hands and feet, high pitched sounds seem to distract him, and the heat gets to him far faster than most babies. He’s 16 months old and not walking yet, so he has to crawl everywhere to get anywhere. Texture and location are two of my biggest concerns when considering activities for him. But it’s time for some summer fun and I want to give my little guy as much of an opportunity to get out there as the next little one. I had a summer full of swim lessons, birthday parties, fun ways to work on sensory issues, and traveling with the family planned. We are making a break for it!

We live in Florida. We are surrounded by water from lakes, ponds, the beach, swimming pools, toilets, mop buckets and we are obsessed with the tub! I figured he was crawling and going to be walking any day now because he has been working extra hard in physical therapy, which meant he could find his way to the water that much more quickly. It was time for a formal introduction to the water for basic water safety. A friend of Kellan’s from daycare was also interested in beginner’s swim lessons. The city was offering basic swim lessons on weekends for a really reasonable rate. There were eight to ten kids per session under the age of three and the parents were in the water with their children. This seemed like it was perfect for Kellan’s first swim lessons.

It turns out, I’m not too sure Kellan was really ready for swim lessons. He only seemed to like being on the ledge where he could splash in a few inches of water. He seemed rather overwhelmed by it all. I think next summer we will try again but most likely in a private lesson. If nothing else, I was happy Kellan and I got to spend time together, the lessons were affordable and he got exposure to the water.

A half an hour a week isn’t enough to stop this baby transitioning into a toddler. I was actually finding that the city’s website had some really good resources. Luckily, our local area is well known for having really good parks.  There is one about 15 minutes from our house that has a really nice playground which has the recycled tires for the playground surfacing which is non-toxic, non-abrasive, ADA approved, does not attract insects, will not mold or rot and reduces mud and dust. Another bonus about this playground is that parts of it are covered. I try to take Kellan in the early morning before it gets too hot or late afternoon to avoid the heat of the day. But is he still sensitive to the sunlight, even on overcast days and is not a fan of sunglasses, so the cover is a really good feature for a little guy like him.

One thing his Occupational Therapist has assigned Kellan for homework is to work on his sensory issues. Kellan has a giant, covered, land-crab sandbox in the shade of the back porch. We spend a few days a week, even if it is only for a few minutes at a time, desensitizing him to textures. I will sit him on top of the sand and pour sand over his bare feet and hands to allow him to get familiar with the texture of it. Initially he was not thrilled in the least, but he is getting better about it with each session. Now he even plays on his own and I think is actually starting to like the sandbox. I also do exercises similar to this with him in the grass, holding sticks, in a bed of pine needles or any opportunity I can find. I try to be creative as possible to maximize his exposure.

This summer has been one of major milestones already for Kellan and me. He was invited to his first friends’ birthday party. I was really excited for Kellan. His now, two-year-old friend was excited to see him at his party and that made me really happy. It made me happy to know that in the eyes of his friend he is just a normal little guy, not the preemie who is delayed that people judge because he is so far behind.

Kellan has a cousin that is turning three next month and unfortunately lives an eight-hour drive away. We don’t get to see him as much as we would like to because of the distance separating us. However, we are planning a road trip for his birthday party. A road trip of that length of time with a refluxer always seems to become longer than you can ever plan. Another thing to take into consideration is that Kellan is no longer an infant and doesn’t sleep in the car seat for hours on end. He wants to get out and get down and crawl. He is in the exploratory stage. Playtime will have to be scheduled into the road trip this time around. However, just knowing Kellan will get to spend time with his cousin is worth the drive, no matter how long it takes.

It is one of my favorite times of the year. This family is determined to not let a little heat, sensory issues, developmental delays, or work get to us. We are going to get out there with the best of them and make the most of it because it is summertime!

Jennifer Sweetman About Jennifer Sweetman

After years of battling endometriosis, severe polycystic ovary syndrome, multiple surgeries, years of infertility and nine doctors telling her she'd never conceive, Jennifer Sweetman (FL) gave birth to an amazing 33-weeker, Kellan. He was born via emergency c-section due to preeclampsia, premature rupture of membranes and separation of the placenta. After a brief NICU stay, Kellan now sees a myriad of specialists and therapists for reflux, GERD, torticollis, developmental delays, feeding issues and oral aversion. Jennifer believes prematurity needs a vocal advocate and that mindset led her to PB101. You can contact her on Facebook or via email.

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