It never fails. Every birthday or holiday approaches and family and friends begin to ask, “What would Ely like?” Batten disease has made this question a complicated one to answer. Each year brings new changes. We grieve the loss of certain abilities (like vision for example) and experience delays on many fronts. Batten can hit hard and fast. It’s one of the many diseases that yanks families through fast, constant change. It’s hard to adjust and just when you do, it changes all over again. As parents, we want to gift our kids joy in a childhood that has been disrupted by therapy and doctor appointments, medical tests and hospital stays. This is a challenge in and of itself as our schedules fill up with care-taking. But now we also have to consider how to create a rich sensory environment catered to our child’s specific needs, disabilities, limitations and preferences. Let me tell you, these kiddos definitely have their preferences!
The constant search for engaging toys
I have had numerous conversations with parents over the last several months about ideas to liven up our children’s toy and play experiences despite what we battle against. It’s common around birthdays or Christmas, for example, for parents to pop up on the batten support page asking for ideas. It’s a hard question to answer and it’s loaded with emotions. Because our kids struggle with things like talking, walking, and seeing, finding gifts that bring joy is super important, but also hard and grief-filled.
My hope is for this to be a helpful resource that alleviates some of the anxiety of gifting childhood to our little heroes, as we absorb loss and changes alongside them. Honestly, I am just one of many parents who could craft such a list. Let that be an invitation for this to open up conversations as we share our secrets to engaging in fun activities with our brave warriors. I want this to be a handy tool to forward on to those grandparents who need a starting place, for example. I know Ely’s grandparents are always looking for something that will light his eyes up, bring joy and create special memories. We lose so much when we are up against rare diseases and various disabilities. But we don’t have to lose everything. That’s what Can’t Steal My Joy is all about.
Documenting what works
So I started writing down everything my son got excited over. As he was gifted toys and activities for his birthday or Christmas, some would last a few moments and get tossed to the side. Others have become trusty pals each and every day. I collected a list of these items that have proven to engage my son and provide giggles. These toys also give us an opportunity to play together and empower his independence in play. The list that follows here have remained appropriate and relevant for his skill levels and interests.
Our current top ten list
- Tickle Me Elmo and Tickle Me Cookie Monster: You guys, these two lovable characters from Sesame Street have given my little guy months and months of giggles with no end in sight. Ely has had his Elmo for over a year and Cookie Monster was the “Santa” gift this year at Christmas. They get played with every. single. day. They also get hauled to the car for rides to therapy, school and doctors appointments. *
- LeapFrog Scout Pal: Our boys were both gifted Scout Pals a few years ago. What I love about these little interactive plush pals is all the features on them. They are personalized and come with instructions to hop online and input all of your child’s favorites. Titus loved elephants, his favorite food was chicken and he was obsessed with the color yellow. Scout was programmed special for Titus and sang songs to him about all his favorites along with songs that spelled Titus’s name. Ely’s sings about monkeys, bananas and the color green! When Titus lost his eye sight and ability to communicate, Scout was one of the only toys we could calm him with. The night-time songs got giggles and sweet smiles out of him nearly every time. Worth every penny. *
- Amazon Fire Tablet with Kid-proofing case: We spend A LOT of time in the hospital. Ely’s infusion days are 9-10 hour days right now. We have a ton of time to kill but need him to stay still in a bed so the needle stays in place. Danny and I started searching for the best tablet for kids that didn’t cost us hundreds of dollars. Enter the fire tablet. There is a 2 year worry free guarantee so if your child breaks it? Send it back and get a replacement- No Problem! That was helpful for us in our decision making because, well… for my speech delayed kiddo, communication often comes out through behaviors, like throwing things. And this tablet has been chucked a handful of times. He’s never broken it and I’ll say thanks to the kid-proof case for that one! It’s legit. This tablet comes in a few different screen sizes so take your pick! 7 inch is linked above. Here is the 8 inch and the 10 inch with cases. *
- Growing Reptile Collection: Okay, I’ll admit it — this one could kinda weird people out. BUT it’s become the chosen bath toy of the year so far in our household! A beautiful soul gifted Ely an entire box of sensory rich toys this last Christmas. One of them was this Alligator that promised to grow. We stuck him inside my mother-in-laws soaker tub to test the claim that it really would grow 600% larger. Each morning, my mother-in-law would come out with the creepies reporting on the growing reptile in her tub. After giving it several (4 or so) days to soak up all the water, I introduced this guy to Ely during bath time. Oh my goodness… he LOVES it. Since then, it has shrunk down a bit, but we can always soak it again to re-grow. It hasn’t mattered what size this little alligator is, he’s a favorite toy that Ely requests to play with every bath. Definitely worth the purchase! *
- Wiggly-Giggly Ball: This was another gift for Ely this past Christmas. It’s a trusty toy to go back to over and over. I can see this quickly becoming a favorite for a child who enjoys silly noises and likes the activity (whether assisted or not) of tossing or rolling a ball back and forth. It creates some silly, fun interaction for you and your child. There is also a mini size! We have the larger giggly ball and I would say it’s about the size of a cantaloupe. If you want something smaller, consider the mini wiggly-giggly ball as an option! *
- Light Up Cars: My little guy (who is mostly blind) spends HOURS playing with these little light up cars. I’m not kidding. We’ve zipped our way through Costco-size battery packs in no time. But it’s worth it. If your child would enjoy the race track that comes along with these cars, you can buy the pack with track and cars included! Also, for those with visual impairment, the lights on these cars are helpful. The cars are also big enough so for those with fine motor difficulties, these are easier to handle and play with! *
- V-tech Swim and Spray Orca: Okay, whales are my son’s favorite animal of all time. So when Grandma and Grandpa purchased this gem for him, we knew it would be a quick winner. Every day my son asks for his “whale”. We actually have several of V-tech’s animals. The songs are nutty and get stuck in your head, but they are cute, fun, and durable for our kiddos. These little guys are handy to haul in the car, take to the hospital (hello surfaces that you can sanitize!), and are just all around educational as they sing and talk about letters. Can’t go wrong with V-tech! *
- Water Beads: We love water beads! It’s not an activity we do often, but when we do, it’s basically all we do. I suggest pulling these babies out outside or in a space you don’t mind water beads flying off and around to. They are bouncy! 🙂 This is such a sensory rich activity that I have done with both my boys in every stage of disease and development. Even my sweet Titus enjoyed these as I helped him move his hands through the tub. Also – my boys have both been in school classrooms where several of their classmates couldn’t have candy for valentines day, for example. If you purchase these mini-packets of water beads you can gift each child their own little packet of fun! *
- Bluetooth Speaker: These are wonderful and if you don’t have one, you might want to consider purchasing one. Our son has particular songs/artists he enjoys listening to. Turning on the radio just doesn’t work for him so we have to customize everything. Our Spotify account has a designated “Ely’s Playlist” with only Ely-approved songs on it! 🙂 We can play them at night when he’s having a hard time, at the hospital to calm him during his infusions, or even in the car (because, guys… I am driving an old stick shift… it doesn’t have a blue-tooth). I love having a portable blue-tooth speaker to tag along! We get better, fuller sound and our phones don’t have to sit right next to him for him to enjoy the music coming from them. *
- Light Up Spikey Balls: These are inexpensive, simple fun! For kids with visual impairments, they light up and the surface of the balls have a “spikey” texture, keeping kids interested. They throw great and fit well into little hands. We have a great time tossing ours around, especially in a dark room!
I hope this list, at the very least, gets you thinking about more ways to provide enjoyable play and interaction between you and your child. Our life stories can be overtaken by medical needs, appointments, and exhaustion. May this add a little inspiration and joy to your family’s life.
Thanks for listening,
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