List of Neurodevelopmental Organizations

Here is a link to Andi Durkin's blogpost which has an extensive list of neurodevelopmentalists.  Check out her blog while you are there.  It is called Down Syndrome: A Day to Day Guide & is packed full of information.

http://dsdaytoday.blogspot.com/2011/06/get-your-own-neurodevelopmentalist.html

What a year it has been!

This has been an amazing year for K & here are a few of the highlights:


- potty training has been a success!  Actually.................almost too much of a success.  Recently, I am being told to leave the bathroom because someone needs her privacy.  lol!
- as many of you know, this year at age 3.5, K started being able to read simple books - not  familiar books, but library books & other new books that she had never seen before.  Even now, 6 months later, it amazes me to watch her do this.

- K has made the jump from signing & speaking to speaking only.  She very rarely signs now & when she does it is almost always just for fun.  I am so happy  to see the same progression to words that we saw with my older daughter.

- her speech has really blossomed & although she still sometimes will use only 1 or 2 words ( actually often my older kids do this too..........hmmmm.....), she is using a lot more sentences now & will quickly speak in a sentence if requested to.

- K recently finished her first year of preschool where she was fully mainstreamed.  Besides a little shyness & unwillingness to have mom leave for a few weeks in the new year, K did very well.  She loves going to school & has been really missing it since she has been on summer holidays.

- she is doing a great job with dressing herself, & can usually do it independently, although she sometimes needs help with socks & starting the zipper on her coat.  Just tonight, we had a funny getting dressed episode.  Usually K goes to bed very well, but tonight, she took a while to settle down.  Great Grandma is visiting, & it was just to exciting to go to sleep.  Finally after about 45 minutes, it seemed very quiet & I commented to my husband that she must have finally gone to sleep.  Instantly, as if that was her introduction, K appeared at the top of the stairs fully dressed.  She had taken off her pajamas & found a completely new, & very cute summer outfit & put it on.  It's quiet again now...........could she be asleep this time?  lol

Her gross motor skills have improved a lot, especially in the last month or so since it has been warm enough to play outside.  Her jumping is where I have  noticed the biggest improvement lately thanks to the trampoline.  She continues to be a fish in the swimming pool, & I have registered her for swimming lessons later this summer - and in case you are curious?  No, I didn't mention any thing about Down syndrome.

It's so hard to put a whole year into a short post on a blog.  There is so much more to my wonderful little girl. When I look back 4 years, I am certain that new mommy could never imagined just how the next 4 years would unfold.  I'm so excited about to see what unfolds in the next year!



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Happy 4th Birthday!

I'm a little behind with this post. K actually turned 4 a couple of weeks ago. She had a party with her friends from preschool a couple of days before her birthday. She insisted on a Barney cake that day. We had lots of fun playing games, blowing bubbles & making balloon animals.

On K's birthday, we planned a dinner with the family. K had requested a Winnie the Pooh cake this time. My daughters & I attempted our first cake with fondant. I thought it turned out pretty good for our first attempt.

About 1/2 hour before the family was expected to arrive, I looked out the window & saw a huge cloud of black smoke & tall, nasty flames pouring out of our neighbors shop. I yelled at my husband & we ran out the door to help. Thankfully, my parents were visiting, so we had someone to stay with the girls. The fire department had just been called, but where we are out in the country, a volunteer fire department may take 45 minutes to an hour to arrive. We rescued some of the neighbors horses that were trapped in an adjoining pen & then turned our attention to preventing the flames from spreading.  At one point, I phoned my Mom to tell her to get the kids & pets ready to leave as I didn't think we were going to be able to hold the fire back & I wanted them to get out before their escape route was blocked.  Thankfully, the wind died down again, & a number of other neighbors started showing up to help so we were able to hold the fire back until the fire department arrived.

By the  time we got back home, all the family had showed up for the birthday.  The roast was being cut up, the potatoes mashed, veggies steamed & everything was under control.  After a quick shower ( we were black from head to toe!),we rejoined the party.  We had a great time, but it was a birthday we'll never forget! K was so cute as she sang Happy Birthday to herself & loved blowing out the candles. I can't believe that she is 4 already!

My Daughter

This is my response to this statement. I never would have guessed my child with Ds...


Would open my eyes to so many new & interesting things.

Would be the most curious child I know.

Would be able to learn hundreds of signs, yet give up signing in favor of speech at age 3.

Would be her own advocate so early in life.

Would, at age 4, already insist I leave the bathroom so she can have her privacy.

Would teach me more than any adult ever has.

Would rule our house.

Would be able to read books at such a young age.

Would love the color yellow.

Would bring out this much pride, awe & amazement in me.

Would be my hero.

Handwriting Without Tears

Just because I don't already have enough to do...........  LOL ! Actually, we are planning to scale back K's neurodevelopmental program a little for the summer.  If nothing else, I've at least decided not to feel guilty if we don't get it done some days & to take some extra days off to do a number of day trips with the kids to the science center, the zoo, an amusement park, & other local attractions.

I am also hoping to add in some things that K really enjoys.  We are borrowing the Handwriting Without Tears program from the school for the summer. It was recommended by both the school & K's OT. So far K just loves it & comes running when I put in the CD.  The CD contains lots of fun songs & K really enjoys doing the actions & trying to sing along.  There are chalk boards, a workbook,  play dough & all kinds of fun stuff. 

The handwriting Without Tears Program has a lot of research behind it & offers  training courses, a newsletter, & all kinds of extra help to get you started on their program.  Here is a link to their website if you would like more information:

http://www.hwtears.com/hwt

In Need of a Father.........

I thought Father's Day might be a good day to talk about Reece's Rainbow.  This is an international adoption agency for kids with Down syndrome & other special needs.  This organization started in 2006 by Andrea Roberts & is named after her son Reece who has Down syndrome.  Over 350 children have found adoptive homes thanks to Reece's Rainbow. 

Adoption is not in the future for my husband & myself right now - at least  not the near future...........but  if you happen to be reading this, my loving husband, speak up if you think you would like to consider it.......... 

Looking at the pictures of the kids on Reece's Rainbow always breaks my heart & I often end up teary eyed.  As I said, we are not considering adoption at this moment, but perhaps someone will read this today & a little girl or boy will tug at their heartstrings and just maybe that child will have their own father by the time the next Father's day rolls around.

Here is the link:

http://reecesrainbow.org/


Here is a link to their Already Home page.  I am in awe of the many families on this page who have adopted not one, but 2 children! Many of these families blogs are listed on this page if you would like to read more.

http://reecesrainbow.org/category/alreadyhome

Happy Father's Day!

We are about to go to my Mother & Father in law's for dinner, so this will be quick!  I just wanted to say

Happy Father's Day!

to my wonderful husband, my dad, my father in law & all of you deserving dads out there!

Time for a Big Girl Bed?

We have put off moving K out of her crib for a long, long, time.  We have a cute little toddler bed that an older sister used, but just haven't got around to setting it up until now.  She hasn't tried to climb out, so it was just easier to leave her there - no wandering at night, no getting out of bed, etc.  Now, don't get me wrong - K is a climber.  I think the only thing she hasn't climbed on is her bed, however, she is very rarely in her bed when she is awake, so just doesn't have the opportunity to climb out.  She literally falls asleep within minutes of being put to bed at night & often within seconds.  Every morning for the last few years now, she wakes up in the morning & calls "Mommy"  & every morning, Daddy goes & gets her right away - isn't he sweet?  lol We cuddle for 1/2 hour before getting up for the day.  Last week though, something happened to make me think it is time.  K almost managed to climb back into her crib.   The only  thing that stopped her was a noisy sister whose distraction made her go on to new & exciting things.  If she is able to climb into her crib from the outside, it only makes sense that it won't be long before she decides to climb out of it, so my husband set up the toddler bed. K was so excited about having a jungle animal bed!

I was out for the evening at an event with my oldest daughter, so K was sleeping when I arrived home.  My husband had texted me earlier that evening to tell me that she was still thrilled about sleeping in her "Big Girl Bed" & was out like a light in less than a minute.  When I saw this peaceful scene, I thought "wonderful"  she is doing so well, but when I reported the news to my husband,  he said she'd landed on the floor twice already, He had put blankets around the side of the bed so she would have something soft to land on if she fell out - Great!

15 minutes later I heard a funny noise & found this:

Another 15 minutes later & here she is:

Nighty night sweetheart - back to your old bed!

Time for a new strategy..........

" Holiday, Holiday!!!!!! "

Like many kids with DS, K has a few more medical/therapy appointments than most kids. Thankfully though, she doesn't have any really serious issues & it did get a lot better after the first year.

I have been determined from day one that this would in no way put a damper on our family life. Rather than having my older kids think "oh, no, we have to run to another appointment for K, we try to do something fun each time instead. Sometimes it is as simple as letting only one of her big sisters come along for a special day. Often we go to a museum, zoo or go on a shopping trip. Instead of resenting their sister for taking even more of our time, they appreciate that because of K, they get to go on more "holidays and day trips.

Speaking of holidays, we just got back tonight from one (therapy). K & I had a great time visitng with friends, checking out the mall, & of course trying out the hotel pool & hot tub. Lately, one of K's favorite words is "holiday!". Whenever she sees a suitcase, she calls out hopefully, "Holiday, Holiday, I go holiday!!!".

Kirril is Home!

What a wonderful ending to what must have been an enormous emotional roller coaster.

Here is a link to the video.


http://www.youtube.com/watch?v=9SnM_QyYnZU

Fun with Fine Motor

We have a set of WiKki Stix laying around that we haven't used much, so we got them out yesterday.  K does not always have a really long attention span for this sort of thing, but she really seemed to enjoy these.

Of course, we started with the letter K.

Next K used the cards to print the first initial of her name.

Lastly, came the freestyle art - that's my girl.

\

I think she enjoyed herself & in my opinion, that is the most important thing about early learning!

"If I Were a Beep"

This was the first book that K ever just picked up & read to me.  She was just 3  at the time, & her speech wasn't as clear, so it came out more like "If I Were a Beep".  There is something incredibly adorable about a little girl who is able to read a short story, yet unable to pronounce all of the words yet. It was one of the sweetest mispronunciations I have ever heard & I was ecstatic!  This is a book that I will always treasure.  Even the memory of that day makes me tear up through a huge grin.  I have no idea what book my other kids read for the first time.  I know that sounds bad, but it's not that I didn't care, it just wasn't something I stressed about with them.  I was oblivious.  I knew that they would learn to read.  Whether it was at age 4 like one or age 6 like another, I just wasn't worried.   When K was born, learning to read was one of the things that I worried about.  I believed she would eventually learn, but I worried that she would struggle so much that she would not get the same joy out of reading as my older daughters did.  For me, If I Was a Sheep was the moment that I first realized not only that my daughter would learn to read & do it well, but also that it would be a passion for her just like myself & my older kids.  Therefore, I will treasure this little book forever in memory of that moment.



"Doggy Do It"

Lately on other blogs & forums, I've heard the comment that many blogs about families who have kids with Down syndrome paint a picture that life is always rosy & almost too perfect, so I thought I'd finally post a bit of a vent. Perhaps getting it out will help me keep my patience a little easier tomorrow:).


14 years ago, my oldest daughter came into the world screaming like someone was killing her. She was not an easy going baby & if something was wrong, she was sure to let us know!  She entered her teen years early -  by 13 months. She was the child that tried my patience, if I counted to 3 for time out, she waited until 3, or just about to react.  She constantly pushed the limits.  Thankfully, she has somehow turned into a much more easy going teenager, & I am praying it stays that way! lol

My middle two daughters seemed quite easy going in comparison.  My 2nd oldest slept 6 hours the night  she came home from the hospital & within a month was consistently sleeping 12 hours every night!  My 3rd daughter didn't even cry at birth, just took a big breathe & gazed up at us, although she wasn't quite the sleeper my 2nd daughter was, she was still a good sleeper & a very content, easy going baby.

I came to believe that perhaps I was a little more sure of myself as a mother, or perhaps I was just a little more relaxed with my next 2 babies.  Not that I felt I was uptight in anyway with my oldest, but there had to be some reason she was not nearly as content right?  I also felt so much more patient with my middle 2 daughters as preschoolers.  Obviously I was just an older, wiser & more patient mother right? Besides, if it wasn't my calm demeanor, my 14 year old would be that stereotypical teenage girl not the wonderful easy going kid that she has become right?

10 years later when my fourth daughter entered the world with the same "someone must be killing me" attitude as my firstborn after an incredibly short labour & minute or so long delivery, I should have known something was up.......

She was just as likely to react as my oldest, however I am grateful that when she was a baby, if she did get upset, she was much easier to soothe.  Even now, she is easier going in that way.  However.......I find my patience being tried again.  She is also a push it to the limit kind of kid & tries to get away with everything she can.  From the battle of wills in the bathroom because "I do it myself" (even if that includes not using soap when she washes her hands which of course mommy won't allow) to picking out every piece of clothing, foods, shoes, her own utensils, & I could go on & on.   When in time out or at bedtime, she uses any excuse to get out  of it & now that she is potty trained,  she wields some extra powers - who can say no to a child who says they have to go? Then there is the mischievousness which brings me to the story which I used for the title of this blog post.  The other day K was playing outside & purposefully dumped over a large tub of toys.  My husband told her "No"  & insisted she clean them up.  A few minutes later, we heard the telltale crash as she did it again.  One of my older daughters went out to talk to her because my husband & I were both busy, but we overheard the conversation.  "K, did you dump out the toys again/"  The innocent sounding reply:  "No, doggy do it." .............& it's only going to get worse before it gets better!

A Fun but Long Weekend

K's oldest sister competes in some of the riding events (barrels, poles, keyhole) at the local 4H rodeo.  It is one of those fun family weekends where the socializing is as much fun as the sport!

 K had a great time.  Here she is leading her buddy Deuce.

Going for a ride

Making sure her buddy had enough to drink

K rarely falls asleep in the vehicle & never (until now!) falls asleep anywhere

 but her own bed - It was a long, long, weekend.  LOL!

Sweet dreams beautiful!

Funnix Math Program Now Available for Free Download!

I have their reading program - Check out my review under reading programs. I had a lot of trouble downloading it - probably due to my lovely internet service.  Even the Funnix trouble shooters couldn't help me, but someone over on BrillKids suggested using Orbit Downloader.  I tried that & it worked great.  In fact I use it to download a lot of larger files now, so if you struggle with the same internet issues, perhaps it would help you too.

Here is the link to download the math program for free:

http://funnix.com/

I haven't tried it yet as I'm just now downloading it myself - let me know what you think.  I think it is free for the entire month of June.

Labels & a Call to Action

Please check out Geralyn's blog post - She makes some wonderful points.  Perhaps someone has some solutions:

http://thedownsyndromeactionplan.blogspot.com/2011/05/call-to-action.html


My concerns about labels are similar - labels give us an excuse to treat our kids a certain way:

http://downsyndromeupupupandaway.blogspot.com/2011/04/gifted-advanced-high-functioning-low.html

the fashion queen.............

Like any independant preschooler, K often chooses her own clothes.  This sort of combination was popular with all of my girls at this age.  Besides, who wouldn't choose a blue dolphin sundress & new pink cowgirl boots as favorites?