Shopping for Kids of All Abilities

By: Kim Nye – Mom to four great kids, ages 6 to 15.

The holidays are here!  It can feel difficult to shop for a child with developmental delays.  My friends and family are always asking for gift ideas, especially for Tessa (15) and Colton (6) who have SLC13A5 Deficiency.  To make it a little easier for your friends and families, I thought I would share some links to toys and products that work well for our family.

I am always tempted to buy educational toys to help Tessa and Colton “catch up,” but I try to remember that they are kids first and developmentally delayed second.  The goal should be to have fun!  If you have favorite toys that are not listed here, I would love for you to share them in the comments or in the replies!


1. American Girl Dolls and Accessories

American Girl Dolls are expensive, no question, but I love that the company makes everything for their dolls, from braces to wheelchairs to diabetes kits to service dogs.  Kids can have a doll that is just like them.  Tessa has had a Bitty Baby American Girl Doll, named Alison, since she was a little baby herself.  She loved to dress her, feed her, and put her to bed.  Added bonus: When Tessa has an EEG or a blood test, we bring Alison along so that she can get an EEG or blood test as well.  Sometimes, we just need a buddy to go through it with us.

Tessa and Alison, getting EEGs together.


2. Pipsticks Sticker Club

Our family is sticker obsessed, so it’s great when Pipsticks sends cute stickers straight to our house each month.  My middle-schooler decorates her school notebooks with stickers, Colton likes stickers as rewards, and Tessa sticks them indiscriminately on everything (😂). When I’m really knocking it out of the park (which is rare), I decorate little notes with stickers, and then slip the notes into my kids’ lunchboxes.


3. Custom Name Stamp

Colton cannot write his name yet, so he likes to use a self-inking “Colton” name stamp.  He is so proud when he sees his name on paper!


4. Highlights Magazine

Kids love to receive mail!  Highlights makes magazines for different ages and levels of understanding.  Tessa likes Highlights’ High Five magazine.  She also likes People Magazine, but I feel like more of a responsible parent by suggesting Highlights (hah!).


5. Play-Doh, Putty, Slime, and More

Sensory toys are a big hit with my kids. (Warning: sensory toys are often messy toys!)  Homemade slime was all the rage about a year ago, so you should be able to enlist your local elementary or middle school kids to help create this present.  For Play-Doh, I would recommend checking out their fun kits.

When it comes to Putty, you can buy therapy putty or Aaron’s Thinking putty. My kids prefer Aaron’s because it comes in all sorts of colors (including glow in the dark).

Kinetic sand is so fun to touch and squish! Even I find myself playing with it when the kids bring it out.


6. Kiwi Co Crates

Kiwi Co Crates are another subscription that arrives in the mail.  Kiwi Co makes different craft kits for different interests and ability levels.  Colton really enjoys the Panda Crate and the Koala Crate. In the picture below, Colton’s sisters helped him make a dino visor from the Koala Crate.


7. Magna Tiles

Magna Tiles are blocks that stick together with the help of magnets.  There were a few years when my girls were all obsessed with Magna Tiles.  I used to find Magna Tile houses and towers in their rooms all the time.


8. Stomp Rockets

Stomp Rockets are fun for kids of all ages.  Even when Colton was too young to stomp, he loved watching the rockets fly through the air.


9. Full Support Swing

Colton had trouble keeping his head up in a bucket swing, so we bought him one with a high back and plenty of support. With this, he could feel the joy of swinging without having to work so hard.

 


10. Mozart Magic Cube

This musical cube was one of Colton’s favorite toys when he was learning to sit upright.


11. Boogie Board Writing Tablet

Tessa loves to color.  The Boogie Board is a good option for when you don’t want the mess.  It comes with a stylus, and the entire board erases with the single push of a button.


12. Books

My girls are avid bookworms; Colton, not so much.  However, books that have real pictures and story-lines about real life topics are the easiest for him to grasp.  We like this series about Lola the Dog:

Colton also likes books by Mo Willems because his sister Maggie reads them to him, and she does all the voices 🙂


Happy Shopping!

-❤️ Kim

P.S.  This is not a sponsored post, just a list of some of our family’s favorites.

P.P.S.  If you are ordering through Amazon, we encourage you to go to smile.amazon.com and choose TESS Research Foundation as your charity. Amazon will donate 0.5% of every purchase to TESS, at no additional cost to you.

Three Fun Crafts For Everyone

By: Lily N.

Hi my name is Lily, and I am 12 years old. Two of my siblings have SLC13A5 Deficiency, which means they have seizures and a harder time learning.

Since my siblings all have different ability levels, we can have a hard time finding crafts to do that we all enjoy. Luckily, there are crafts that I’ve learned that we can all have fun doing together.

Just a friendly safety reminder – when handling scissors and hot glue make sure to be cautious. They can hurt you if you use them incorrectly, so have an adult help you when handling them.

Now, here are my three fun crafts:

1. Tape Painting:

While we all love to paint, we all enjoy different styles and variations of painting. This is because of our different ages and abilities.

Maggie and I love to do real acrylic painting, while Colton loves finger painting and Tessa loves watercolors. Here is a fun, new style of painting that we all loved!

Materials:

  • Washi Tape or Duct Tape
  • Canvas – any size
  • Paint
  • Paintbrush
  • Water Glass

Instructions:

Put washi tape or duct tape on a canvas in the desired shape. Colton put the tape in the shape of his name, and Maggie did flowers. They both turned out really cool. Then, you use any type of paint (we used watercolors) to paint the WHOLE canvas. In order for the shape to show up properly, you need to cover all the edges of the tape with the paint. Colton had so much fun, and unlike with some of the crafts that he does with me, he never got bored. His favorite part was dipping the paintbrush in the water, then on the paint, then on the canvas.

2. Bubble Canvas:

Maggie and I did this craft and we had a lot of fun! Tessa and Colton didn’t do the craft, but they sure loved playing with the bubbles!

Materials:

  • Bubbles (if you don’t have regular bubbles, you can make bubbles out of dish soap, but you have to be careful because dish soap can kill plants and grass)
  • Food dye
  • Straws
  • A canvas
  • Acrylic paint (the acrylic paint should be the same color as the food dye… or at least a similar color)

Instructions:

Take the dish soap and separate it into different bowls. The number of bowls you use depends on how many different colors you want. We wanted two colors so we separated the bubbles into two different bowls. Add the food dye and acrylic paint into the bowls (you can always add more, so only add a little at first). Then stir until the liquid is even. Dip your straw into the liquid and blow through the straw directly above the canvas. It was hard at first, but we got the hang of it.

The thing I love about this project is that it is mostly bubble liquid (which is mainly soap) so if we messed up, we could just use a baby wipe to rub off the bubbles and try again. This is a messy craft, so I would do it outside.

3. Rainbow Plates:

Tessa and I did this one morning while Maggie was at a friend’s house, and we had so much fun! This craft is great for two people because you can each use half of a plate, and then you’re not wasting the other half.

Materials:

  • One white paper plate
  • Cotton balls
  • Markers and crayons and dot art stampers
  • Hot glue gun
  • Hot glue stick(s)

Instructions:

Cut the white paper plate in half and then cut a semicircle out of the straight side. Your finished cut-out should look like an arch/rainbow. Then start coloring in the colors of the rainbow. Higher ability level kids can put the colors in order in straight, pretty lines or, like Tessa, you can scribble wherever you want. Once you finish coloring your rainbow, use hot glue to add the cotton balls on the ends of the arch. Then, your masterpiece is done! You can hang it up on the wall, use as room decor, or even give it to someone as a present! I loved making this craft with Tessa, and I can’t wait to do it with Maggie and Colton!

There you have it! Three easy crafts that I love doing with all my siblings. Thank you for reading this blog post! I had a lot of fun making it!

❤️ Lily

A Day in the Life of a Family Living with SLC13A5 – Vattikuti Family

Prasad and Anu are the parents of Sanjitha, their daughter, and Abhinav, their son, both of whom have SLC13A5.

By 6:00 am, we start the process of getting our kids ready for school. We help them go to the restroom and brush their hair. They like to pick out their own clothes, so we help them put on what they choose.

For breakfast, we help them eat and take their medicine. One of our kids loves Indian food while the other loves American food. After they’ve eaten, we take them over to each of their school buses.

Both come back home by 4 pm, which is when they do home therapy. Each of our kids receives 1 hour of activity, and each of us takes care of a kid for that hour.

When they’re done, we cook dinner, helping them to eat and giving them their third dose of their daily medicines. The schools give them their second dose, along with their lunch. Afterwards, we usually watch an Indian movie or listen to a kids’ songs together, and that gives our kids a chance to play and dance around some. They both go to bed by 9 pm.

Before 2013, children with SLC13A5 were put in the undiagnosed disease group. As one of the first families in the TESS Foundation group to receive a diagnosis, we had been waiting around 7 years. The doctor told us that there was another family with a child that might be like ours, saying that they had found a gene, tested by GeneDx. Because of that we were able to track down Tessa in the NIH and found that she was exhibiting similar symptoms to Sanjitha and Abhinav. That was when SLC13A5 was officially discovered.

We were relieved to find out, because before that we had felt clueless. Our family didn’t know what the root cause was and it really troubled us. We had traveled to the Mayo Clinic, the Cleveland Clinic and to India, searching for a diagnosis.

Some of the most difficult parts of SLC13A5 Deficiency are the finances required to take care our children’s needs, and the challenges of being caregivers day-to-day. We’re worried about what will happen after we’re gone, since there won’t be people to take care of them. Because of their medical conditions, we don’t feel that we could go back to India, and America still feels foreign. Through the TESS Foundation, we hope that we can connect with more families from Europe and Asia.

In some ways, we’re kind of like any other family, working hard, day-to-day. It makes me happy to hear them call me Dad, or when they give me hugs and kisses. There was one time that we had to call 911 and the paramedic service came to our house, and as they were putting the medication through an IV, my kid started laughing at the sounds that the machines were making; I guess it sounded like a toy. Because of that, the thing I remember most from that experience was a big smile, and the sense of gratitude that we were all here, together.

The TESS community kind of feels like my family; in a way, we’re all literally genetically connected, through the SLC13A5 gene. After meeting Kim Nye and the TESS Foundation, we feel more hopeful. We’re looking into gene therapy and we hope to find a solution. Because of the Foundation, we think that people will think more about SLC13A5, and that more progress will be made.

A Day in the Life of a Family Living with SLC13A5

Maureen Grover and her husband, Hans, have three children, Landon, Brayden, and Alaina. Both Brayden and Alaina have SLC13A5 Deficiency, and the severe epilepsy and developmental delays that come with that.  Here is a glimpse of a day in the life of a family living with SLC13A5.

During the summer, my husband and I wake up every morning around 7:30-8:00 am. We give Brayden (11 years old) and Alaina (8) their breakfast and medicine. Then Alaina receives breathing treatments to help with her hypotonia and recurring pneumonia.

In the afternoon, we give them their medicine with their lunch. Brayden also has to watch Spongebob or the world will end (lol), while Alaina is just happy as long as we hang out with her. We might barbecue and put Brayden in the pool, and then we give them more medicine with dinner, putting the two to bed around 7:30-8:00 pm.

The 7-1-7 have become cornerstones of our day, as we have to deliver their medicines within an hour of these times. Alaina hasn’t had pneumonia since they started their breathing treatments, so those seem to be helping a lot. We have so many machines in our house that it sort of looks like a hospital room.

Brayden wasn’t diagnosed with SLC13A5 until he was 8, around 2013. Before that, we went everywhere to find answers. Brayden and Alaina’s symptoms and development are not exactly the same, so we didn’t have a clear box of symptoms to treat or diagnose. Looking back, it’s all become a blur of imaging, testing, and trips to Boston Children’s for genome testing.

The diagnosis itself was bittersweet. There was the relief in finally knowing, but it was also upsetting to learn that there was no cure or proven treatment.

Knowing of other terrifying diseases in which there’s regression, the prognosis we received was, in some ways, not as bad as I had feared. Even so, having children with these kinds of diseases is terrifying. I don’t talk about this much, but when you have kids like our kids, there’s always the fear of how long you have with them. Seeing kids like ours in their 20s does give me hope.

I’m afraid of losing our kids early. I’m afraid that there’ll be nobody to care for them later on, if we aren’t there. We have our eldest, Landon, who would never want anything to happen to his brother or sister. But it’s hard to tell someone who is just starting his life that he needs to be responsible for two special needs adults.

My children don’t talk, so I’m afraid that someone could hurt them, and I just wouldn’t know because they couldn’t tell me. We’ve learned to trust their caretakers, but it takes time to build that trust. I know that no one loves them like my family does.

Since the diagnosis, we now have people working on their disorder. Before that, we were just treating the symptoms and hoping that someday there would be a specific treatment.

Brayden is different now after being diagnosed and receiving treatment. Alaina is still like a baby, but Brayden can stand now and recently took a step on his own! It almost feels like he is just missing something. Like we just need to get it somehow and then he will be okay. He is so close to being able to stand and walk like other kids. Whether by science or by his will alone, I have hope that he’ll be able to do so much in the future.

Being a part of the SLC13A5 community means having people who know what you’re going through, having people who have shared your experiences. Even though other parents may listen, they still don’t fully understand.

You have all of these plans for your children and you kind of mourn for those futures that you imagined. Other parents will look at you as though you’re selfish, like “You should just be grateful that you still have your child.” But I still imagined something for my children, and I grieve that loss.

As is the case with rare diseases, I’ll give people this long gene name–SLC13A5– and they’re usually like, “What’s that?” When I went to an epilepsy group meeting, everyone felt bad for me and sort of made me feel like we were their worst case scenario. That was the opposite of what I was looking for!

Having a community is so important. I post in the private SLC13A5 Family Facebook group to get people talking and because it feels like a family to me, where people truly understand our journey.  I’m so grateful for all of you in our TESS community.

Different – A Memoir by Lily About Her Sister, Tessa

Hi my name is Lily and I am 11 years old. My siblings, Tessa and Colton both have SLC13A5 Deficiency, which is more commonly known as seizures. I love both my siblings and only hope for the best for them and other people like them. I wrote this memoir in my 5th grade class, and I am excited to share it as my first TESS Research blog post:

At first, it was just Tessa and I. We played with each other with our princesses and Barbie dolls like any little girl did at the age of 2 or 5. I loved my older sister and I still do, even though she is disabled. My sister Tessa was born with SLC13A5. It is more commonly known as seizures. Tessa is the most brave, sweet, and fun loving person – but sometimes people don’t see that.

Sometimes, people treated her unfairly when they came over for playdates with me. They would say, “Can we go play outside?” To get away from Tessa. Also, some girls would say, “Why does she have seizures, is something wrong with her?” People don’t seem to to understand that what matters is on the inside, not the out. Tessa on the outside is a 5 foot, 14 year old. She has short brown hair and hazel brown eyes. Of course, what people notice first is the fact that she has seizures – around 100 a day. Also, they notice that she says very few words. Some words she can say are yes, no, mama, daddy, Lily, more, all done. Tessa is a normal 14 year old trapped inside a broken and sick body. Really, she wants to be like everyone else and have fun with friends and goof around.

I love Tessa and of course I, like most people, want my siblings to have a great life and feel appreciated and loved. So, when people treat Tessa unfairly I feel sad. I feel bad that I have such an excellent life when Tessa is stuck struggling with her disabilities. I used to feel bad that I have such amazing friends and supporters and Tessa doesn’t. I used to feel embarrassed that I had a disabled sister, because she is different. Now I see that different is good! If everyone was the same then there would be no fun. Picture a world when there is the same colored houses on every street. Every house has the same flowers, trees, interior, and etc. Now think of that but instead of houses, they were people. That world would be boring and no fun. With our differences we complement each other.

Tessa has made me the person I am today. When Tessa was in kindergarten, she was learning how to read. I ended up also learning to read and I was already in 1st grade reading level in kindergarten thanks to her. Also, having 2 disabled siblings has helped make me very responsible, kind, considerate, and including. I babysit my disabled brother and I help Tessa with her homework. I make sure to give people second chances and not judge a person by his/her appearance. Not only has Tessa helped me learn all these amazing life skills, she has learned them too!

Tessa is so brave. At the age of 3 or 4 she started having more and more tonic clonic seizures (seizures that lasted a minute or more). She would ride away in the white, red, and blue ambulance with the sirens wailing and flashing blinding lights at me. She would also be brave when she took the disgusting medicine she had to take daily to keep her from having even more seizures. Not only is Tessa brave, she is also super sweet. In elementary school Tessa would bake treats like brownies, cupcakes, and rice crispies. She would then bring them home and share them with my mom and I. Also, when Tessa got a toy that my younger sister wanted she would be very nice and share the toy with Maggie. Tessa is just like any other girl. She is obsessed with YouTube and loves playing on her iPad. Sometimes Tessa and I will make slime together and she loves mixing things into it. She also loves to dance. This year she went to the Hillview dance and she had so much fun. She also likes to go to school and hang out with other disabled girls like her.

Tessa is the bravest, sweetest, prettiest, and most fun person! If only people could see her amazing heart, not her epilepsy symptoms and disabilities. I hope one day kids realize that Tessa is just as awesome as everyone else.