Another great article

I was planning on posting the article below, but then came upon this video news clip (thanks Meredith) that I couldn't resist sharing too:



This is a great article (thanks Renee) about not accepting the limitations that we and others put on our kids.  "Expect. Don't accept."

Paul Daugherty's 2009 Keynote Address at the Remarkable Families Symposium should be required reading for all who work with children who have special needs...including parents!

It's a great reminder to "Expect. Don't accept."

Mr. Daugherty has a daughter with Down syndrome. Here are a few excerpts from his keynote address, but you really should read the whole thing.

People look, but they don't see. People, and I'm talking qualified professionals, people trained in special education, too often don't look at Jillian and see possibility. They look at a child with Down Syndrome. They don't see who she can be. They conjure a stereotype. It's easier that way.

We never say never. Never is not a word. It's a self-defeating state of mind.

We have to change the way people think before we can change the way they act. Altering perceptions is like breaking a stone with drops of water. It can be done, if you're willing to take the time.

And a reminder for parents:

All any of it required, at base, was a disbelief in limitations. She can't learn? No, you're not willing to let her try. As parents, we cannot let that go unchallenged, not ever. We owe our kids that much. Expect, don't accept.

Do not give in to those who would ignore their better natures, because it's easier to retain a stereotype than change it. Change requires work, but it's the only way we improve as human beings. When people resist change, protest. Scream real loud. Give 'em hell. Don't let them tell you what your kid can do. Expect, don't accept.

Wordless Wednesday: Bookshelf Disaster

New Parents should read this

I have been doing a lot of thinking since our local DS support group meeting last Wednesday night.  You see, this meeting had a very small turn out of only 6 families total, and yet 2 of those were new families.  And I mean NEW!  One husband and wife have a 4 week old little girl (saw a photo and she is just precious!) and another gal was there with her 3 week old little boy.  I was lucky enough to actually hold this little boy and my goodness did it feel like forever since Sweet Pea was that size!  He was so sweet and just slept so peacefully in my arms.  Anyway, back to the point...having these new families there caused the conversation to be very different than in recent meetings when we haven't had new families.  We were there to answer any and all questions that these new families had and they had a lot of great questions.  Sitting there talking with them it started to dawn on me...that was me 15 months ago when I attended my first meeting!  I was the one super nervous about what were therapies like, what was the future going to be like for our children, how did we speak about it, etc.  Now I was actually the one helping them know that everything was going to be okay.

I have often felt that on the road to total acceptance I am probably at 70% or 80%.  I have felt that I've been stuck at that spot for the past 9 months.  Wednesday night made me realize that either I wasn't at 70% 9 months ago yet or I'm now at 90%!  It was amazing to be able to honestly tell these new families that everything really would be okay.  One gal was funny and shared that when she tells people about her son they try to immediately tell her that it will be okay.  She says, "yes, it will, but it still SUCKS".  It made me laugh because I felt the same way that she does in that I knew deep down that it would eventually be okay, but having a child born with a disability does suck in that it wasn't what you were anticipating and didn't fit the picture of the perfect child in your head.  However, today I don't feel the same level of suckiness (new word) when I think about Sweet Pea's diagnosis.  I still wish that she didn't have DS because it would make her life a lot easier (and heck, ours too), but I know that she wouldn't be the same adorable little girl if she didn't.  I do believe that the extra chromosome had a major impact on her personality and not just her cognitive and physical attributes.  She probably would have been adorable in her own right if she were typical, but she would definitely be different and this particular little girl has stolen my heart completely.   I remember not feeling very connected to her for many, many months.  I worried that I never would feel for her as I expected to feel for a daughter.  I don't know when it happened, but that has definitely changed and I couldn't be happier about it!  She certainly deserves a mommy fully in love with her and heck, I deserve to have a daughter that I love so much that I would do anything for.

Here is a very sad secret that I will share...there were many times in those early weeks and months that I actually wished that she had some serious illness that would take her from us!  Now just thinking that thought makes tears stream down my face (I need a waterproof keyboard), but I did have those thoughts at times.  Just having those thoughts made me feel like the worst mother ever, but I couldn't change that I had them and I just tried to be honest with myself about them.  Now I would fight to my death to keep her from anything that might take her from us!  Back then I hoped that this day would come, but I honestly had no idea if it would.  I am so elated to be able to share that I felt that way because there is no way that I would have shared that if I felt that way at all anymore.

16 months and I'm still not 100% there, but wow, I'm still making good progress!  It took these new parents to be so open to sharing their fears and concerns for me to realize that I am not there anymore.

To any new parent that might be reading this, have faith that it really will get better and easier.

• Give yourself time to adjust to the diagnosis and how it will impact your life.  It will impact your life, there is no way around it!  But it isn't a fraction as bad as I imagined initially.  
• Give yourself time to grief the loss of the child that you thought you were going to have.  I am sure there are some people out there that have always hoped that they would have a child with DS because they knew someone very dear to them with DS, but I certainly didn't and I had 31 years of picturing my children in my head and Sweet Pea is not what I pictured even once.  To grieve that loss is natural and actually healing.  Here is a great article that I posted in a prior post: http://www.pediatricservices.com/prof/prof-15.htm
• Get involved with a local DS support group or make virtual friends with a DS mommy via blogland.  Blogs have provided me an amazing glimpse into others homes and I believe played a huge role in my progress.  Through blogs you can see older children with DS doing many of the things that I feared my daughter would never be able to do.  Through blogs you can meet other kids around your child's age and see how they handle issues and share successes.  However, be careful that you don't read blogs of children with severe medical issues early on.  Even typical kids can have serious health issues, but you don't need to be fighting more battles emotionally and I know with me, if I read about someone else's problems, I spend time worrying about them.  Stick to the healthier blogs at least until you get your feet under you.
• Give yourself the space to feel negative thoughts.  Maybe journal or share them with a very close friend.  This blog was my attempt at getting feelings off my chest and the funny thing is, I think I started to feel better about Sweet Pea when I started this blog.  It gave me a forum to share all that I do love about her.  I started looking for positive things to share with family and friends and those new friends from blogland.  A blog isn't for everyone, but even a weekly letter to a distant relative might give you the same push that this did for me.  But allow yourself to feel the wide variety of feelings that you might be feeling.
• If you already feel pretty good or even better, congratulate yourself!  Don't worry if you feel like you fall backwards a bit at times because it is very normal.
• Congratulations on your new baby!!!!!  I couldn't hear those words without cringing for a long time, but you deserve congratulations because your baby truly is a very special baby and you will love him/her with all your heart soon enough.

Fun with Sweet Ella Grace!

I know...you guys are all jealous again...but I have now gotten to hang out with Ella and her mommy Denise now twice and this time Sweet Pea was able to join us!  She finished her 3rd round of chemo while I was there so they are almost halfway done now and Ella is doing amazing.  She is such a joy to be around!  I took a ton of pictures in hopes that a few of them would be cute of both of them, but those little stinkers wouldn't both look cute at the same time for anything!  I did end up with a lot of cute pictures, but not the drop dead adorable ones that each gives individually.  Oh well...

Warning...picture overload...and I have no idea why all the comments are from Ella's perspective.  I think she just shows a lot more emotion on her face and was definitely the one calling the shots between the two of them.

Who is this little girl invading my room?


Oh no!  She is moving towards me now!  Mommy, this is not cool!


If she is going to be in my room I better check her out a little:


Sweet Pea isn't so bad after all!


Want to play with my ball?


Sweet Pea is starting to cramp my style...can I move farther away without really moving?


Silly little baby, it's not that crazy when you only hold on with one hand.  See, I can do it.


See, this is how you do it.  Look a little more confident and you will fool them all.


You don't listen very well!  If you are going to cry you are going to have to leave my crib!


Mommy, I'm being very nice by letting her stay, but I am warning her, if she pulls that again...


I'll just hang out in the back and let the crazy baby do her thing.  I'm cool enough to handle it.


Sweet Pea is quite cute.  Maybe I'll give her another chance to be my friend.


Aren't we studious little ladies?


This baby is never going to learn to read a book...you hold the book straight and read it...simple as that


I give up...


What a good book stand you make Sweet Pea!


See, this is how you read it.  Finally you got it!  My job is done.

We hope to visit them again sometime soon!  Thanks for letting us invade your room and helping to make a complete mess of the place!  We pray that this round and the next 3 continue to go smoothly!!!!

Random Catch-up

I've been neglecting this blog more than I should and so now it's time to catch you up on some of the photos and videos from the last few weeks.

As I mentioned in yesterday's posting, Sweet Pea likes to climb out of her high chair now.  I wasn't able to capture it on camera yesterday because I really am not that bad of a mommy.  Today though Daddy was able to capture her while I played the role of spotter.  We really will start strapping her in...I promise!  I just forgot and then it was too cute not to get on film.  Enjoy the series:






A few weeks ago:
Gotta love summer with Concerts in the Park!  I wasn't allowed to wear my hat because Sweet Pea thought it looked better on her...which it did:




This toy is a little big for her still, but we had to give it a shot.  Don't let the smile fool you, she actually didn't enjoy it for long.  It might be a few years before her feet can actually reach the pedals.


She likes the bell though!


Last weekend:
A glimpse into Daddy's future with two adorable girls to entertain:


Another Concert in the Park...this time with a Neil Diamond tribute band! Gotta start them loving Neil from a young age like my mom did with me! I need to explain these photos...besides being cute they also show a first for Sweet Pea. I always see pictures of little ones crashed out where ever they were playing and wondered if Sweet Pea would EVER do that because she normally just starts to cry and whine when she gets tired. The concert ran right up to her bedtime and Sweet Pea was definitely tired by this point and so she actually laid down next to me! By the time Daddy got the camera out she decided it was time to do some stretching before bed, but it was as close to sleeping as we have come yet. Maybe one of these days we will find her asleep surrounded by her toys.




Video of our little jumping bean from 7/30/10:


On her 16 month birthday (7/29/10) she learned how to make her circle-of-neglect play music and you have to love the smile she gets when the music actually starts! When you hit the duck button in the center it plays a duck sound, hit it again and it says duck, hit it again and it says pato (duck in Spanish) and then if you hit it a 4th time it will play the music. She only does the center one, but since she is hardly ever in the circle-of-neglect that isn't too bad.

Busy Day

Sweet Pea has only been home for 90 minutes, but she has shown me a number of new tricks this evening.

1. Sweet Pea had a new tooth break through!  Her top left tooth finally broke through and it looks like it might be another that is regularly shaped too!
2. Sweet Pea has been doing a little bit of actual crawling for a week or so now, but by a little I mean she takes one or two very slow motions in the quadruped position forward.  I guess even that is an overstatement because most of the time her right leg was straight and only her left knee was bent on the ground.  But it was becoming very common for her to move a foot forward to get something close in this position.  Anything farther than 1-2 feet was achieved by her fully developed fast army crawl.  The true crawling was what I was considering an emerging skill.  Tonight however, she showed me at least 3 different times that she may not be crawling...ever.  It appears that she has decided that she wants to be a bear instead and crawl up on her hands and feet.  She did one crawling motion in the quadruped position and then popped up on her feet and went a couple more motions.  I'm guessing the PT won't be thrilled about this new development, but it is what it is.  I'm just glad that she is deciding that it is worth the effort to move!  After being content to sit there for hours on end (with a fair amount of whining too) for months and months and months...this is great!
3. I left the phone on the floor and next thing I hear is her daddy's voice on the other line.  It was his voicemail so she left her first voicemail.  I thought that it was his cell phone, but when he got home and didn't have a message I realized that it was probably his work line so he will have a cute message to start his day on Monday.
4. During dinner Sweet Pea showed that she is related to her monkey cousins.  A quick bit of back story...Sweet Pea has not been happy eating dinner (or most meals) recently and so in our attempts to have her be willing to eat anything, we have allowed her to not be strapped in because it meant that she would eat a little more.  She loves to stand up in her chair and since we don't leave her, we let her do it and tell her to sit down and she normally listens to us.  She enjoys the ability to stand up, even if it is just for a second.  Being strapped in doesn't allow this and she gets so mad about it.  So, tonight she was sitting in her chair and wanted to reach something that was on the table next to her.  It was out of her reach even when she was standing so this little monkey decided to put her leg up onto the tray of her high chair!  I think my time of allowing her to be unstrapped has come to an end!  She did this new trick at least 2 different times and I quickly got her back into the seat, but each time my heart skipped a beat.
5. We have one of those ball popper toys that the balls shoot out of and are supposed to go back down this slide and into the machine again.  Ours just got new batteries so the balls go flying across the room more often than they stay in the slide.  She used to just laugh at them, but tonight she kept taking off charging after the stray balls and throwing them back at me.  I loved it!

She is changing so much these days.  She went through a period of no change and now is a period of quite rapid change.  Daddy and I are both extremely proud of our little girl!

Stomach Emptying Scan

Today Sweet Pea went to Children's Hospital to have a stomach emptying scan done.  The GI (and we) believe that her stomach probably doesn't move food as quickly as it should.  This is what causes her to spit up hours after eating and the food is still fully recognizable.  So this test was just to confirm that and see how bad the situation is.  We won't know the results for 2 weeks when we go in to see the GI, but Sweet Pea gets an A+++ for her performance today!  She woke up at 5:15 which wasn't a good start.  She was in a great mood already as she was kneeling at the side of her crib waiting for me to come back in the room.  I got her back to sleep by her sitting in my lap in the rocking chair until about 6:30.  We were on the road at 7:30 to pick up Grandma and head up to the hospital.  We are so lucky that Grandma is retired and so willing to give up so much of her time for her little granddaughter!  Grandma was a necessity today because to do the study they have Sweet Pea ingest radioactive stuff and I couldn't be anywhere near it or her.  We get to the hospital, check in and play in the waiting room for a few minutes.  Sweet Pea will not sit still anymore.  She was bouncing back and forth between me and Grandma, but happy the entire time.  We were called back about 8:45 and the nurse explained the procedure, I helped get the food setup (without the radioactive part) because they were going to take a portion of the food and put the radioactive stuff in it and have her eat that first.  Then if she is still hungry and willing to eat then they would give her more food without anything radioactive added.  She had 10 minutes to eat whatever she would and then they were going to strap her down and take pictures of her stomach for the next 90+ minutes.  I kiss Sweet Pea goodbye and wish Grandma luck and leave.  Yes, leaving was hard, but I knew that she was in great hands.  I hang outside the room and can hear a little when I put my ear up to the door...I'm sure I looked funny to anyone walking past, but I didn't care.  The feeding is going well and since she hadn't eaten since 10pm I wasn't really surprised.  The fact that she wasn't fussing at all since she had gotten up was surprising as heck, but a welcome surprise.  When they finished the food Grandma kept her upright for as long as they would let her and then put her down on the bed and began the process of strapping her in.  They don't mess around with this part!  Sweet Pea wasn't going anywhere as you will see below.  She handled being restrained like a champ and with a little singing from Grandma, Sweet Pea fell asleep.  That made the first hour of the procedure very easy for everyone involved.  I got a call from Grandma with an update and was able to peek my head in to see it for myself.  She was laying there straight as a board with even her head straight up when I saw her.  It was hilarious and yet sad at the same time!

Here she is sleeping with the big camera over her taking pictures:



This is a wider shot to show the computer that was counting down the time remaining for the test and the right hand screen was where the stomach pictures were being seen.  It definitely wasn't easy to see what was going on, but Grandma said she could see things definitely going on in there.



When there were about 30 minutes left in the test Sweet Pea woke up and so Grandma got to entertain her and keep her happy.  That isn't an easy task when she is free to do what she wants, much less when she is wrapped up tighter than a mummy!  Grandma did an excellent job though and I could hear Sweet Pea blowing raspberries and "talking" through the door.  Apparently she learned a bit about pop culture because Grandma had found an old People magazine in the room while she was sleeping.  She also had some finger play and songs sung and finally watched some Baby Einstein video.  She would look at Grandma with her big blue eyes that seemed to say, "What are you doing to me?" but didn't protest about it.  Amazing and I'm so glad that Grandma was able to be there with her to help her through the strange experience.

Here is a photo of her awake and wondering what is going on:


We will let you all know the results in two weeks after our visit to the GI.  We see the GI and ENT that same day so hopefully there won't be any major news to share, but we will share what there is to share.