Noah's Dad

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• Hey, careful on rewarding the cry! he'll do it for everything! I think it's a GREAT opportunity to start teaching him to sign the word "MORE" so he learns to sign instead of cry. :) xoxo I wish I started teaching Amber sooner and he will amaze you at what he will learn!

• Melody that sounds like a GREAT idea! Thanks for sharing!

  How old is Amber by the way?

• Hi Rick, I realize this is an older video but wanted to throw my two cents worth in. Teaching him signing is a great idea! Have you gotten to do that? "More", "all done", "please" and "thank you" are all pretty easy signs for babies to learn. I wish I would have known more about that when my own kids were babies. Even at the high school level, many of the negative behaviors we see stem from a student's inability to "use their words" to express themselves. It seems like we use those words a lot "use your words" not your hands to hit, etc. We also use Boardmaker pictures and other symbol pictures a lot. Another big area that I have become aware of, not just of my students with Down syndrome, is that often kids with Special Needs have a lot of sensory issues/ needs. A good OT can help with that and help figure out what need or result they are trying to get by the behavior they are displaying. We now have a sensory room at our school and have had for a few years, although we could have definitely used one before that. Even in my classroom I have a partitioned off room where I have a bean bag chair and a weighted blanket when someone needs some sensory time or alone time. For some students having a place to separate from the others and calm themselves is really important. There is also something called Brain Gym that we are using with more students as a way to calm themselves. It seems like even in the general classrooms they are encouraging movement by all the kids during the school day to be beneficial. Looking at some of the things you and others have posted are pretty typical of all kids - messy eating, etc. I remember one of my girls at age two would eat in her high chair and when she was done, she would pile up her bowl, plate and spoon and push them off the high chair! We had to get to be really fast when she looked like she was finished eating. Most of my students with Down syndrome and other special needs areas thrive on consistency. It's really easy for them to learn a negative behavior when it's rewarded by attention, etc. Maybe you knew much of this already, but I thought I would just add my thoughts. Thanks again for all you do. There is no way anyone can stay in a bad mood when they look at Noah's darling face and personality.

• Hi hi! It's Chie and Reina from Hawaii...Reina loves to kick the keyboard while I'm using the mouse!! Sometimes she'll kick the keys and weird stuff happen to my computer! Hehe. Noah is soooo cute~!!

• @Chie, that sounds just like Noah! They both like the way things (anything!) feels. They enjoy the different textures, etc.....It's fun stuff.

  Thanks for the kind words about Noah...we agree. He's a keeper! :)

• I'm not sure the first time Warren demoed his manipulation for us, but he was less than a year. At 6 months old or so, he had to be put on steroids for his seizures which made him so hungry that we had to start solids to compensate. He was about a year and a half old before I could get him to hold the spoon without tossing it. We had to get a bowl with a suction cup, and a spoon attached by a cord just to keep everything on the table. :) Even once he was feeding himself one of us had to sit facing him so that he could tell he had our full attention.

• @Warren's Mom

  Thanks for the comments. So sorry to hear about the seizures, how is he doing now? (And how old is he now by the way?)

  You should see Noah eat...it goes everywhere! Talk about a mess. I can't wait to post some videos of that! I like that bowl with a suction cup, and spoon with a cord idea! I'm going to file that away in my "good idea" file! :)

  Thanks for sharing.

• @Noah's dad

  Warren is doing great now. He's 6 1/2 years old and is seizure free. At 6 months old he was diagnosed with infantile spasms and we did an 8 week course of an injectable steroid called ACTH gel and 3 or 4 days into the injections the seizures stopped. In theory they should never recur.

  The bowl and spoon suction cup set was the greatest thing ever for us! We've moved past it now, but it was awesome. It wasn't the set by munchkin, but I can't remember who made it. Our OT connected us with it.

• @Warren's Mom

  That's great new! So happy to hear about Warren's good health! You guys are rocking!

  By the way, you should grab a Gravatar -----> http://en.gravatar.com/

• H! Liam, now 10, had a nickname until he was about 3, which clearly indicated his ability to manipulate us! We called him "King Liam." Liam, being our first child, used his birth order to clearly "work" mommy and daddy. Not only did we not know much about babies, he has Down syndrome on top of that and he knew we had a huge learning curve! He would act just utterly helpless when doing things so we would step in and do it for him. But, if mommy and daddy weren't around he "magically" was able to do whatever he needed! Hmmm. Smart, I would say! :) Thanks for your blog. I love reading it. What you said about the comments people make is just so on target. It still drives me nuts. I say to people all the time, "You have obviously not seen Liam in trouble. He is more Dennehy (our last name) than Down syndrome.

• @sarra,

  That is hilarious...! Maybe I should try that line!!

  By the way....be sure to grab a Gravatar ----> http://en.gravatar.com/ (It makes things so much more fun!)

• Great post! I love your blog, I am the mom of two children with Ds, Emir who is 7 and Ayelen who is 4. Hope we can chat one of these days! have a happy new year!

• Wow....so cool! Thanks for the kind words!

  How did you find out about our blog? I'd like to chat with you to! I bet you have some interesting stories. Did you adopt either of your children or are both "yours?"

  By the way I like your Gravatar!

• They are my biological children, but they don´t look like haha, they ask me all the time if they are adopted, first because they are blond and blue eyes and I have a very latin look, and second because it is not usual to see siblings with Ds. I found your blog at twitter, hope we can chat some day! Enjoy ur weekend!

• Amen re: their sinful state. They are fully human just as we are and in need of the salvation/heart change that comes from the quickening of the Holy Spirit. My mom and Dad used to refer to my deceased sister, who had Downs as "our little angel." I was always jealous of that as a child. Now, I know some misspeak and refer to deceased people (because they were good/sweet/kind/etc) as angels (some assuming they turn into them once in heaven... including wings, etc.) Yet, the Bible tells us that we will judge angels (I Corinthians 6:3) and that angels long to look into the mystery of the gospel (I Peter 1:12) that has been revealed to mankind. Not that we transform into them. Totally different beings that God created. Specifically pertaining to children with Down Syndrome, the Lord will have mercy on whom He has mercy (Romans 9). Therefore, if He so chooses to bestow upon this precious son of mine, the knowledge of His great mercy and grace and save him, whom He created and fashioned together in my womb, then that is of His sovereign will, and I believe that He will provide Blake with all that He needs for life and godliness, according to His purpose in Christ Jesus. Obviously, it's no surprise to God that Blake has cognitive limitations when it comes to understanding the gospel. So, of course, He will make a way for Him to understand, if He wills. When Blake stomps his feet and slaps his hand to the side and says "NO," it's really not very angelic. Just like any other kid. LOL. Thanks so much for your post! :) Bless your family.

• Thanks for sharing your story!

  It sounds like you know just where I was coming from. :)

  I'm thankful that we can trust in a God who is good in whatever He wills to do! What a friend we have in Him....

  I hope you guys had a very Merry Christmas.

• Reminds me of when our daughter was about a year old she had beenr quite naughty before church at then I got to church and Natalie was acting well like a 'little angel' (lol) and they said to me 'I love Downs, they don't know sin'
  Grrrrr!!!!

• Ha,ha..awesome! People are so..umm.....awesome?!

  Where are you guys from?

• Bedford in England in the UK

• Cool! We have lots of 'blog friends' from the UK! We think it's awesome.

  (And I think of you all so much more than 'blog' friends...I think you all as real friends!) It's an honor to be on this journey with so many incredible people. :)

• Your son is seriously too cute! He made me giggle! Reuben is still my little angel! But I'm sure he will let the other side show soon xx

• Thanks Libby.

  How old is Reuben by the way?

• Great article. Reminded me of how my daughter (who has cerebral palsy) will get careless and accidentally run into someone with her powered wheelchair and the person she ran into will apologize to her! Happens all the time.

• Yes! I hate when people trivialize those with illnesses or disabilities by talking about how they are so strong and loving. It seems so patronizing, especially with adults. I think that people are afraid of being rude or politically incorrect but really the best thing is to treat the person like you would anyone else (with maybe a bit more patience and explicit instruction).