Spoon Feeding

I've been meaning to add this post for awhile...these aren't the greatest pictures (ignore the messy hair, and messy house!), but they will give you an idea of a technique that I found online to show how to spoon feed a child with Down syndrome. Because our kids have lower muscle tone vs. typical kids, it is harder for them to control where that tongue is. This method apparently teaches them where it belongs when they eat. We started it when she first started eating. It worked for Violette, so if you are having issues you might want to give it a try. We only had to do it a few feedings before she got the hang of it.

First put the food on the spoon, and feed it with the spoon edge to the left (or right, your choice):

Then refill your spoon, and put the spoon in to the right (or left, depending on what you did first):

Then, refill, and put the spoon straight in:

That's it just keep repeating that! I hope it helps!

Also adding a link to Maroon Spoons - they seem to help with feeding!
http://www.beyondplay.com/ITEMS/T309.HTM

Things You Might Want if Your Baby Has Down Syndrome

When you have a child with Down syndrome, there are quite a few developmental things that are pretty cool to have, and some stuff to be aware of. Anything we can do to help our little one's brain's and body's grow is good stuff!

There is also a list on the Down Syndrome Pregnancy Blog that has additional suggestions - be sure to read the comments!

Here are some of my favorites - things I used and loved, and things I wish I had:

Videos

Our little people are very visual learners!

Love and Learning apparently helps them learn to read the sight words - it is pricey, and it features kids with DS. Lots of families have been very successful with the program.

http://www.loveandlearning.com/home.shtml

Signing Time is a fun, fun, fun way for you and your child to learn to sign - most kids can generally sign before they can speak, so signing is a great bridge language for them. If there were one thing on this list (other than the nose fredia which I'll get to in a bit) it would be this.

http://www.signingtime.com/

Stuff

I never had one of these slings, but it apparently is built to support their little legs better than a typical baby carrier that spreads their already loose ligaments even more:

http://www.babyktan.com/

How cute are these for chilly times at therapy?

http://www.babylegs.net/

Now, my baby rolls all over the place now, but I still start her off at the top of the crib with this wedge underneath her. Our kids tend to get reflux quite a bit, and this helps elevate them. I put UNDER the mattress.

http://www.target.com/Safe-Lift-Deluxe-Universal-Wedge/dp/B00067AUP2

Toys

One of my favorite first toys - this one is so easy to spin and get moving at such a early age - Violette loved it!

http://www.amazon.com/LeapFrog-Spin-Sing-Alphabet-Zoo/dp/B000NRX5XE/ref=sr_1_1?ie=UTF8&qid=1242008836&sr=8-1

Big fan of the Fridge DJ - make sure you get this one and not the Learn and Groove Radio! It plays really cute music and plays a lot of alphabet and number songs

http://www.amazon.com/LeapFrog-Fridge-Magnetic-Learning-Radio/dp/B000EULX8E

Because our kids are so cute, why not give them a way to look at them self all the time?
http://www.geniusbabies.com/lamfirmiraww.html

Tummy time, tummy time, tummy time. I was told that tummy time was the best way to get my baby strong all across her body. This little toy really helped get that tummy, and neck, strong!

http://www.geniusbabies.com/spin---explore-garden-gym---lamaze.html

Melissa and Doug make THE BEST toys for any kids, but I think there are so many that they have that are helpful with a lot of the things that our kids have deficits in. Love some of their simple puzzles (check out the jumbo knob puzzles)

http://www.melissaanddoug.com/shop.phtml

Congestion and Reflux

Our kids tend to get a lot of yucky congestion - I loved this to help that out:
http://www.drugstore.com/qxp148010_333181_sespider/simply_saline/sterile_saline_nasal_mist_baby.htm

Speaking of yucky, this product isn't for the weak of heart, but dang, does it work. After you see your LO suffer for a while, you'll want one of these. Trust me.
http://www.nosefrida.com/

Books

First, don't read anything that wasn't published in the last few years. There is a lot of outdated information out there, and some of might wrongly scare you because they are based on old thinking.

I Can. Can You? Is such a cute little board book featuring kids with Down syndrome. My Child really like it, and the one that I have listed underneath it!

http://www.amazon.com/Can-You-Marjorie-W-Pitzer/dp/1890627577/ref=sr_1_1?ie=UTF8&s=books&qid=1242009472&sr=8-1

All of the Woodbine books are really helpful. Don't be overwhelmed by all of the information in them - I just pull them out every so often to see what suggestions they have for where I think my baby is at any given time.

http://www.woodbinehouse.com/Down-Syndrome.29.0.0.2.htm

I love these little books too!

http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-60613-000-1_A_.asp

Let me know if you have any good things that I've left out.

Today the Board of our local Down Syndrome group met with our congressional representative. We talked to her about the importance of pre tax savings account plans for people with special needs (they allow parents of kids like Vi to set up savings plans that don't conflict with their abillity to get social security or Medicaid), and I spoke specifically about the need to fund the Kennedy/Brownback bill and what I personally think will come of better prenatal information getting into the hands of women who have a prenatal dx of DS or other birth defects. I also talked about the women I have been able to meet on the web who have had bad experiences with their obs.

We talked about adoption, and our strong local program with a 250 person wait list for kids with DS. We also talked about what the stimulus could do for our organization (the answer was call my office.) Another subject was DS National Institute of Health funding. I brought up the fact that there is a lot of learning that scientists can do not only about people with DS with research $$, but that they can also learn more about how typical folks can avoid certain diseases like solid tumor cancers, that our kids don't tend to get. She said that sort of information was very very helpful to her.

She also announced in our meeting that she is going to join the DS caucus. And she spoke about Cathy McMorris Rodgers, a congresswoman with a child with DS. She said how lovely she is, and what a strong advocate she is within congress for kids with DS. She said that her little boy is SOOOO cute and that she brings him around a lot to the house. She talked about how wonderful it was when she was pregnant, and how they had a shower for her, and what a shock it was to everyone when her little boy had DS.

It gave me a very strong feeling that our children are in the hearts and minds our our congressional representatitves.

Only thing she said that I didn't care for was mentioning "normal" kids at one point. I think I will encourage our Executive Director to send aid some people first language information. All in all, though, it was a great day!