Tuesday, August 2, 2011

Mommy must haves for children with Down Syndrome

I've often been asked what items/products I absolutely could not have lived without, what helped Seth progress/eat/drink/play/build muscle tone, etc. Basically what worked for us . . . and tons of shit that just didn't. We went through a lot of products to find those that were perfect for Seth, things that functioned for our lives and needs.

There are a lot of products that are universally great for DS in general because let's face it . . our kiddos have a lot of the same needs. So I will address these needs and products I used for our lives. If you have any questions about other products or if I leave something out . . . well just ask in the comments section.

Oh and just to clarify . . . cause I have to be a smartass about this . . . I'm not getting paid to endorse these products. . this is just to help other moms. These are products that we use/have used.

Bottles that are easy to use for kids with poor suck reflex:

As I wrote in the last post, Seth had tons of issues feeding. These bottles helped. Not only were the nipples good for him to latch on, the drop-ins aided in him not ingesting as much air and getting as. In fact Seth never had an issue with gas as an infant. There are different nipples with varying degrees of difficulty so you can upgrade as your child gets older. Also they don't require cleaning!!!! Drop-ins!!! Fuck it all . . .that itself is worth my money. Do you know how much time I saved not scrubbing bottles??? Do you know how easy it was to pre-make bottles with the drop-ins and just add water as needed. It's so easy to use. It made my life with a newborn so simple. As a first time mom I think that's worth it. Also the drop-ins are pretty cheap and you can buy the generic brand drop-ins because it's the same damn thing.

To help your very wobbly low tone child to sit up:

The Bumbo Seat!!!!


I loved this seat for Seth. We bought ours off Ebay for very cheap. Hello!! Buy used stuff on Ebay. We are not millionaires, we like Ebay, I think I live on Ebay some days. Craigslist is good too. Plus your child is not going to use it for that long anyways. Seth started neck/head control at around four/five months old. He didn't have the strength to hold up his big noggin that long and this chair REALLY helped. It was great when we started rice cereal too. Seth was too small for a highchair and we wanted something on the ground for safety reasons. So the Bumbo seat is awesome. Oh and get the tray with it. It's worth it!!

To increase oral motor skills:

CHEWY TUBES

Ok I'm going to say it and say that I'm probably a chewy tubes snob. There are tons of websites selling these now but I'd go with TalkTools. Pricey . . yes . . worth it . . HELL YES. So our kiddos have trouble with oral motor skills because of low muscle tone. These chewy tubes build oral motor tone/skills and feeding skills by teaching them to chew. It will improve mouth closure, it will improve speech. It makes a difference. That's it tomorrow I'm going to write a whole post about oral motor therapy because it is, IMO, the single most important thing you can do for your child with DS. But believe me, you want these chewy tubes. That and the honey bear straw cup to start straw drinking. More on straw drinking tomorrow. Please visit the Talk Tools website and read their articles. Sarah Rosenfield Johnson is amazing and her program works. (Ok now I sound like an infomercial-sorry!)

For language/sign language

SIGNING TIMES


Ok so everyone knows I love Rachel Coleman. If you are going to do sign language with your child, Down Syndrome or not, this is the way to do it. She sings and signs and teaches them so easily that I learned from her. I now know over 200 signs, can sign the alphabet, about ten of her songs and can count to ten . . . all in sign language. Seth is 3 1/2 and can sign over 100 words, strings signs and words together and can sign the alphabet. He is currently working on signing his numbers as well.

Seth's biggest area of struggle is language, speech in particular. He understands everything that is said to him but he can't always let us know that. Sign language gave him a way to talk to us when words weren't coming. It's emotional for me because every mother wants to hear their child speak but that isn't always possible. (teary-eyed at my comp now!) Signing Times was/is a great tool. Seth loves all of the DVD's. I'm not a huge fan of the Baby Signing Times ones, we stick with the regular ones. Now I know not every mom of a child with DS does sign language, it's a choice. I'm not advocating that you do or don't - that's your choice and dependent on your child's needs. But if you do . . go for Rachel Coleman.

Oh and we got to meet her at the NYC Buddy Walk last year and are seeing her again this year!!! Here's a pic:


That picture is awesome. Ok moving on. . .

Sensory Balls (sounds a bit dirty!)

They are fun, they are cheap, they provide tactile sensation for our kiddos. I love them!! Plus one of Seth's favorite things are balls. These are all easier to grasp. They provide great sensory input for kids that need it. I think I will do a post about sensory input as well. Oh so much to say and so little space to say it . . .

Rifton Chair


Now I know what you are thinking . . it's pricey and it looks strange. This is a Rifton toddler chair. We got ours through EI because Seth needed it for feeding. Tomorrow I will write more about the whole oral motor thing but basically to work on oral motor skills our kids need to be in a supportive chair that holds them up. This is the chair that works for us. Something like this that can strap on to a regular kitchen chair, something with a seat-belt and a footrest for your child, that will work as well. If you can, like me, try to get EI to pay for it. Remember again, we aren't millionaires, just regular parents who have kids that need special things.

A rocker/rocking chair or horse or something to that extent. Here is what we have:

It's from Ikea, it's $10, and I know it looks weird but Seth LOVES it. It provides vestibular sensory input. Ok my computer is telling me vestibular isn't a word but it is. Damn that red line under the word. Vestibular input is gained through stuff like swinging or rocking or spinning, basically anything that has to do with moving the head/inner ear/visual and auditory. I feel like I'm explaining it poorly but I can't exactly put it into words.

So Seth, I noticed, craves vestibular sensation. That's the type of child he is. We had some issues with him rocking/head banging and I used to hold him and rock him but I needed something better. This little rocking thing is it. He can go on it, rock and he loves it. It's healthy. It's much better than having that child that head bangs and rocks back and forth all day. There is no way to derail certain behaviors but I try to find more socially acceptable ways for Seth to get what the sensory input he craves.

A good, sturdy straw cup with replaceable straws:


We use these cups from Munchkin. I love them. The leak a little but overall they are very good. They have a valve which makes Seth work his oral muscles to get the drink which is good for oral motor therapy. They also have replaceable straws. No more buying 30093458 cups. Seth chews through straws, clean through. He's the straw chewing kid. I guess it feels good with all those chompers he has in his mouth. So I like the fact that I can replace chewed straws or even straws from the cups that rolled under the couch and now have about 5 days of milk buildup that is impossible to clean. (ewww I know but it has happened, I'm so real here it's scary) No worries - new straws!!!

A good wooden push toy for walking skills/support:

We used this one from Melissa and Doug. I love Melissa and Doug toys but they are pricey. Again I'll reiterate . . EBAY. Love Ebay so much. So we purchased this off Ebay. We used it inside and outside on concrete. It's seen a lot of time but it's still doing good. In fact we are giving it away to a friend in need. . . sorry Jennifer I forgot to bring it to your house again!! Next time! Another little boy will get the chance to use this great toy. It's so fun. The alligators open and close their mouths as you push it . . . ok so I like kiddy toys . . I'm allowed to. I also like Seth's building blocks, so much fun!!!

Ok So this post is getting long and there are more products but these have really helped. I'm going to talk about one more thing, something that every parent for every child all around the world should have for their child: a library filled with age appropriate books. I think we forget how important reading is for children. Read to your child. One book a day, two books, it only takes about ten minutes. It's great for kids to hear/see their parents read. Kids want to emulate their parents, give them a good example to follow. I'm a reader by nature, my degree is in Secondary English Education so I'm a bit biased. I love to read. I know not everyone likes to read, not everyone is me. There are millions of books out there, graphic novels, even books on electronic devices. Find something you like to read and share it with your children.

4 comments:

  1. So many things I loved in this post!!! This was GREAT to read!!! Not to mention entertaining as well, lol, you talk just like me! I am interested in those chewy tubes! I love to read too, and it is one thing Russell has taken a great interest in and learned a lot from. Reading books to him is where he learned the majority of his words and signs. Looking forward to reading your Oral Motor Therapy post!! So hurry up and write it :D

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  2. I love that Munchkin straw pieces are replaceable. I didn't know I could order more. *going to go look for these now*.

    The Sensory balls are super cheap every year at Costco when they put out there Christmas toys (which they seem to be gearing up for now).

    My bear cub will not chew on anything but food, not straws or chewy tubes or anything else. It's so frustrating when I hear that it is so good for them.

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  3. Kimberly- a trick for the chewy tubes - peanut butter, jelly, anything sticky that your child loves to eat!! Seth really liked it with peanut butter or Nutella. It was the only way to get him to chew in the beginning!!

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  4. Have you seen this? Happy Strap, designed by a Mother in S Africa to provide hip stability during movement. HappyStrapUSA.com

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