Sunday, October 31, 2010

31 for 21 Day 31: Happy Halloween!

It's late and I'm exhausted...more pictures to come later.

I have to quickly pat myself on the back...I'm pretty proud of myself for only missing one day in the 31 for 21 challenge!  It's been fun, but I'm glad it is over.  That was hard work!  I enjoyed so many of the posts that others published and I'm very glad I participated, but I'm looking forward to not having the pressure to post every day!

Happy Halloween!!!!

Saturday, October 30, 2010

31 for 21 Day 30: Progress in the Park

This afternoon Daddy and I took Sweet Pea to the park for a short bit.  We started with our typical swings...


We (ok, more me than Daddy) then decided to make Sweet Pea work a little and take advantage of the stairs that are at the park.  She doesn't get much practice climbing and it is certainly a skill that she needs to master so I try to take the opportunities when they come.  Having an extra set of hands for spotting was wonderful too...although we didn't even need it!  She was a pro and just got faster and faster!  She would climb up the stairs...I would be at the top waiting for her...she would use me to stand up...we would cheer and hug...I'd lift her over to the slide and push her off...she would slide down to her Daddy who was waiting at the bottom...Daddy would take her back to the stairs to do it again and again and again!





Before we left we decided to try the more advanced set of stairs...these were more like a ladder.  Sweet Pea had no fear and went right to town on them.  Daddy obviously helped on these, but she was working hard and knew what to do.


Daddy and I are EXTREMELY proud of our little girl.  She is making such great strides and working very hard in the process.  Way to go Sweet Pea!  You will be loving the park even more once you are really mobile!

31 for 21 Day 29: Halloween Parade

I can't believe it!  I get 29 days into this and I blow it!!!!!  This one is only 8.5 hours late...

We skipped our center based therapy program today in favor of Sweet Pea participating in the Halloween Parade at her day care.  All the kids get dressed up and walk around a few blocks collecting candy from the local businesses.  We did it last year and it was fun especially since Sweet Pea has a cousin that goes to the same school.

The morning started off well...





And then the parade began and a block into it she started to get sleepy.  My sister took her thinking that she wouldn't be as comfy on her, but no luck...










I was even able to get the costume off of her before putting her down in her crib at day care.  She was out!  Poor girl!

Thursday, October 28, 2010

31 for 21 Day 28: New Crawl?

It appears that Sweet Pea has decided that her old crawl was not as functional as she would like and so she has adopted this new crawl...or at least she did all last night.  We will see if it continues today!  I think it is very cute and she did REALLY well considering prior to today she had only managed to move a hand, one leg and then the other hand before falling backwards into sitting.  Now she crawls a good 5-7 feet before she needs a break.  I'll be curious to hear if this is a "better" crawl from a proper movement pattern view when we see her new PT on Friday...if she continues with this crawl by then.

I'm secretly hoping that this is one step closer to walking, but who knows.  She army crawled and did her arms, leg and foot crawl for a combined 7 months so she could do this new crawl for at least that long.  She will walk when she is ready and I need to keep reminding myself of that.  Heaven knows she won't let me tell her when she is ready!  (She must get that from her Daddy)

Enjoy the two videos.  They were taken within a few minutes of each other, but I couldn't decide which to post and Daddy said to just post them both.  Enjoy!

Video 1:


Video 2:

Tuesday, October 26, 2010

31 for 21 Day 26: A Good Change in Therapists

We have been trying to make a few changes in our therapists and therapy schedule recently and it's been weighing very heavily on my mind for a few weeks now.  Here is the deal:

Speech: We got 30 visits of speech from our insurance for the year and we just used up the last of those last week.  Our speech therapist was okay, but the sessions were only 25 minutes and it took me 20-30 minutes to drive there...each way.  Since this was through insurance we were stuck as the only other therapist that was in network was over an hour away without traffic and we know how lovely LA traffic is!  The topper on it was that for the last 2 weeks the therapist had been pushing us to try unthickened liquids (not just water) saying that we would know if she was aspirating and that her coughing was an indication that she was aware and keeping the liquid from going into her lungs.  Well, I'm not a doctor, but the other speech therapists that are involved with Sweet Pea have been shocked when I tell them this.  Especially since I voiced my concern about her swallow study showing "silent aspiration" which means that there were no indicators! 

With our insurance benefits coming to an end I had been working with our regional center coordinator to get speech services through them.  I was VERY nervous about this process as I have heard horror stories about getting speech services approved with our recent budget cuts.  When we had tried to get her speech services around 14 months, before we went through insurance, they were claiming that she wasn't 50% delayed and we had to wait until then.  Daddy and I were so frustrated because we knew that she was 50% delayed without any question!  So I was preparing myself for battle and expecting the worst.  I just have to say that I LOVE our service coordinator!  He got it approved without ANY fight!  We went from having to drive 20-30 minutes each way for a 25 minute session twice a week to having an in home or at daycare 60 minute session twice a week with someone that isn't telling us to have Sweet Pea drink thin liquids!  She even asked to borrow our DVD of the evaluation that Sara Rosenfeld-Johnson did on Sweet Pea in May!  She may not have experience with Sara's protocol, but she is at least willing to listen.  I'd say that is a big check in the success column!

Physical Therapy:  We have been getting more and more frustrated with our physical therapist.  She changes our appointments, leaves early, won't write reports when needed and is just not that pleasant of a person to work with.  Oh, and on the therapy front...she doesn't even do much with Sweet Pea!  She will spend an entire session having her chase a cell phone and going from sitting to standing.  We have been doing this for months now!  Seriously!?!  That is all you want to do in 50 minutes?  No wonder Sweet Pea doesn't like her sessions and cries the moment she sees the PT a lot of the time!  So, I finally decided that enough was enough and looked into switching therapists.  We lose the convenience of it being in home or at daycare, but I believe that we will gain so much more by having it be productive time!

Back in June we had our local support group play date at this place called NAPA Center and I fell in love with the facility and the therapists that we met that day. We are hoping that NAPA will be able to take over all our services eventually, but we are moving one by one at this point.  They aren't approved for speech yet so we can't use them for that, so we started with PT.  Hopefully their speech services will be approved by regional center in a month or two and in the meantime I can meet their speech person and see if it seems like a good fit.  If not, then we will probably only have them provide OT and PT.

Today was our first session of PT at NAPA and the Sweet Pea took to the therapist immediately.  She knew how to push Sweet Pea just enough without pushing her over the edge.  We had a full hour of PT where I feel that Sweet Pea actually worked for a good 45 minutes!  That has NEVER happened before!  The therapist spent a good amount of time evaluating Sweet Pea and determining what her strengths and weaknesses are so that she knows what to focus on.  It appears that her right leg may have more tone, but that she can't integrate it as well.  By integrate I mean that she uses the right leg as one unit instead of movable pieces that work together.  That explains her signature crawl and the therapist pointed out that even when she is walking or standing, her right leg is more of a peg leg.  Her left leg is what she does all the movement with.  I found that interesting as no one had ever mentioned anything of the sort before, but watching her it made perfect sense.

I will need to remember my camera next time because the setup at NAPA is really great.  Pictures will describe the place much better than my words.  They have an area where they can hook her into a belt with bungees that help support a portion of her weight, but allow her to practice standing and weight bearing.  She tolerated this for over 15 minutes straight where she normally will only stand for a few minutes.  It was amazing to see her so happy to be mobile and standing and I look forward to her being able to use the supports that they have at NAPA to gain the confidence and stability in order for her to do it without additional supports.

At the end of the hour Sweet Pea was still smiling and waving and crawling all around.  For the first time in a strange location with a new therapist I never imagined that the session would go so well.  We have our next session on Friday as a make up for next Tuesday (when she will hopefully be getting her ear tubes) and I hope that the next session is just as good as today!

Summary: I need to listen to my gut more and not be so slow to make these changes when I feel that they are really in the best interest of Sweet Pea.  I REALLY wish that there was a "try before you buy" with the therapists, but at least in our situation, you rarely get the chance to meet with a therapist before you have to get approval to use them.  It's a hassle to switch, but it is definitely worth it if the therapist isn't a fit for your child.  Friends and family...please remind me of this sooner next time! :-)

Monday, October 25, 2010

31 for 21 Day 25: Calming Fears about Baby #2

Jen from Hiatt - Party of 4 posted this wonderful entry a few days ago and I just had to share.  As you know, I've been nervous about how baby #2 will handle having a big sister with Down syndrome.  What will it mean for her as a young child being toted around to various therapies, when she goes to school, teasing from peers, pressure to care for her when we are too old and decrepit, etc.  Lots to worry about, but I need to keep in mind that ultimately what is most important is that we will love this new baby with all our hearts and teach her to be more caring and loving because of her sister.  We hope that this will translate into a very strong bond between them, but only time will tell that.  Heck, my sister and I didn't get along for years and now I can't imagine my life without her!

I really enjoyed reading this and I hope you will too:

Thursday, October 14, 2010


DS and my daughter (to see some adorable pictures of the big brother and little sister you should click on this link)

Before we even conceived our daughter I knew that she would be amazing. I knew that extra chromosome that her brother carries would affect her in such a positive way. While Hannah is only 3 and in the throws of being a strong willed drama queen I can already tell she is going to be a more compassionate, understanding young woman than I ever was. What some would call different is normal for her and that is something I wish all children were exposed to. I believe it would make for a much more understanding society. Maybe there would be less bullying in school and more acceptance. I watch Hannah at Zach's soccer games and I love that kids in wheelchairs, using walkers and walking with crutches don't phase her one bit. She doesn't even notice it. I also love that she understands Zach's speech better than we do. There are times I am not understanding what he is telling me and I ask him to repeat it and finally Hannah will turn to me and say "he said........". That warms my heart. I have no doubt that they will continue to be great friends and that she will likely be his biggest advocate.

Sunday, October 24, 2010

31 for 21 Day 24: Friendship Walk

This morning we did the Pier to Pier Friendship Walk with a couple families from our local Down syndrome support group.  It was a great walk along the beach and there was a wonderful turnout.  It was a lot of fun and since it was all flat I didn't kill myself doing it!  The weather was perfect (surprising considering the streak of poor weather we have had recently) and Sweet Pea was in a happy mood.  Now, Sweet Pea slept for 95% of the walk, but we got her to walk across the finish line and that was my one goal for the day so it was a complete success!

She even got to break through her own tape, but we missed getting that photo...too slow of a camera.





She even got a medal!


And lots of love from the high school cheerleaders!




This is actually before the walk...she was making sure that she was hydrated for the strenuous activity she was about to partake in!  Don't you just love her leg positions!

Saturday, October 23, 2010

31 for 21 Day 23: Supported Walking

First an update on Sweet Pea's health:  I think the drugs are REALLY working this time!!!!  She slept through the entire night and didn't get us up until 6am!!!!!  We have been getting up anywhere from 4:15 - 5:30 for the past week and a half and were really hoping that this wasn't a new habit of hers.  We've done 3 rounds of drops and she is tolerating them much better than I feared.  I am continuing with my couch maneuver as it is the most comfortable for me and I assume pretty comfortable for her.  I need Daddy to help me give her the oral medicine because she refuses to take meds from me!  The worst part is that she will not only take them from Daddy, she smiles and opens her mouth for more!  It's annoying, but as long as she will take them from Daddy I'm not going to fight it too much.  Let's hope that the meds continue to work and that we get another night of good sleep.

On to the true topic of the post:

This afternoon Grandma came over for a few minutes and Sweet Pea was in a great mood.  She stood up using my legs for support as she often does and then she reached for my hands so I bent down and she took them.  I took a couple steps backwards and she lifted her feet and took real steps!  I couldn't believe it!  We did this for quite a while around the house and she was having a blast!  Mommies back was starting to get tired and Daddy made a brilliant statement, "Why don't you get out the Juppy?"

Yes, now that would be a brillant idea!  I was so excited about the Juppy when I first got it and yet I only used it a couple of times because it got put in the diaper bag which I stopped taking with me!  Doh!

So, I got out the Juppy, zipped her up in it and off we went!  She LOVED it!  She acted like it was a doorway jumper some, but she walked quite a bit.  She was having a blast and it was by far the longest that she has ever stood for.  Yes, she was supported a fair amount and so she didn't always have to bear all her weight, but she did a LOT of work and had a great time doing it. 

I don't know what a PT would call this, but I will call it "supported walking" until I learn otherwise.  Here is a video (sorry about the missing head for a chunk of it) of Sweet Pea doing her supported walking with a guest appearance by our dog, Kodi.  Kodi loves to be on camera!

Friday, October 22, 2010

31 for 21 Day 22: Ear Infection Update

I apparently was plain old WRONG on Monday when I said that Sweet Pea's ear infection was getting better with the antibiotics.  Last night we practically got zero sleep thanks to a poor little girl who kept waking up screaming.  She wouldn't calm down just by being patted on the back or by turning on her seahorse so we knew something wasn't right.  I really can't wait for her to be able to tell us what hurts!  I need to start working on that with her because it will be so useful for a very long time it seems!

After the long night we decided that another trip to the doctor should be in the plans for the day so that we could have her looked at before the weekend.  Glad we did!  Turns out that the antibiotics aren't working and her left ear has probably perforated so we not only get to switch antibiotics, but also we get to put drops in her ears twice a day!  If anyone has any brilliant ideas on how to keep a infant/toddler on her side for 15 minutes with drops in her ears so she is screaming, please let me know!  I put the first batch of drops in her a few hours ago and I wedged myself behind her on the couch (mind you my belly is getting bigger so this is harder than it should be) and tried my best to keep her still and on her side.  She cried for about 5 minutes and then passed out from exhaustion.  It wasn't fun, but it was at least successful for the most part and so I'll take that!

We have no idea how this will impact her ear tube surgery that is scheduled for Nov. 2nd.  We see the ENT on Thursday for our pre-op appointment and I will know more then.  If it really is perforated then we may only be doing one tube for now, but again, I'm not a doctor and all of this is new to me so I will wait to see what our ENT says on Thursday.

Please think positive thoughts for little Sweet Pea so that she can get better really soon.  Not only does she need her sleep, but mommy and daddy do too!

Thursday, October 21, 2010

31 for 21 Day 21: Simulate Speech Difficulty of People with Down Syndrome

Thank you Sunflower Stories for posting this article about how to try to share how difficult it is for people with Down syndrome to speak.  I can see it being used a lot in our future!

http://www.examiner.com/special-needs-kids-in-kansas-city/understanding-speech-difficulty-for-down-syndrome

Sunflower Stories posted a video of their son doing the demonstration!  I think you will love it!

Tuesday, October 19, 2010

31 for 21 Day 19: Interesting Article

Interesting article about bullying and how a mom helped to ensure that it didn't happen to her son with Down syndrome:

http://www.cnn.com/2010/OPINION/10/07/hertzog.down.syndrome.son/

Amazing Signing Time DVD Sale

I'm not going to count this as today's 31 for 21 post, but I had to let you know of an amazing sale that is happening on Signing Time DVD sets!  Thank you to Cathy at A Walk In Lily's Garden for sharing this great deal!  A wonderful relative has already taken advantage of this deal and Sweet Pea will be so excited when Christmas arrives!

Bestbuy.com has the Signing Time Season 2 volumes 1-3 set and volumes 4-7 set on sale for $14.99 each!  The volumes 1-3 set is regularly $60 and the 4-7 set is regularly $100!  They are both on back order, but Christmas is far enough away that it shouldn't matter.  When you go to the Best Buy website type go to the search box in the top right and type in Signing Time and you should see the first two items that are displayed are the two sets.

Sweet Pea currently has two Baby Signing Time DVD's and I don't think the word infatuation comes close to her obsession with them.  She will go up to the TV and start "nicely" yelling at it as her way of telling us that she wants to watch Baby Signing Time.  We will have to work on her requesting, but at least she is learning that she can use communication to get across her wants.  What is also funny is that when the DVD ends and the credits are rolling she starts vocalizing again as if to let us know, "hey parents...get on the ball...the DVD is over and you need to restart it."  She used to just watch it passively, but the past few days she has started to move her arms and hands for a lot of the signs.  It is so cute and I think that she is going to learn a lot of signs from these DVDs.  The regular (non-baby) version of Signing Time is more grown up and great for toddlers, but that day is coming for our little girl sooner than I'd like to think!

Happy shopping!

Monday, October 18, 2010

31 for 21 Day 18: Ear Infection Clearing Up

Sweet Pea's ear infection seems to be getting better with the antibiotics that we started her on Friday night. I'm enjoying not having the ear tubes in terms of bubble baths, but it sure was nice not having ear infections either! The trickiest part about them is that it isn't like a cold that you can easily identify. Ear infections in Sweet Pea don't cause any symptoms except for fussiness and sometimes messing with one of her ears. She messes with her ears when she teethes though and she can be fussy for any number of reasons so it really is a guessing game until we take her in to see her doctor. I hate being an overly protective mother, but it seems that is just part of being on top of things when it comes to her.  Sweet Pea will get her 2nd set of ear tubes Nov. 2nd and that should get us through for a few months.  I'm really hoping that the new ear plugs that the doctor ordered will work so that we can let her have bubbles and play in the water as much as she wants!

Here are just a few pictures of our adorable little girl. Oh how I love her so much!!!!



Sunday, October 17, 2010

31 for 21 Day 17: Success with Water!

Most of you will have no idea why I am so ecstatic right now, but for those of you that have witnessed Sweet Pea's refusal to swallow water, you will understand.  Sweet Pea has spit out all water for the past few months and we have tried everything...warm, cold, room temperature, cup, straw, etc...all have resulted in us getting sprayed with water or just plain old spit if she doesn't get enough water to actually spit out.  She seemed to think this was fun and I was fearing that we may never see the end of it.  The distance on her spits was getting impressive...too bad she is supposed to be a sweet little girl!

Today during our snack I was drinking water and she seemed to be interested.  I try to encourage her to drink water at every chance I get so I let her have some in complete anticipation of it coming right back at me.  Surprise surprise though...she didn't!  She swallowed it and signed "more"!  We did this a TON of times and I finally went and got the camera to have documented proof that she really drank some.  I hope that this isn't a one time deal, but if so, at least I have proof that she did it once!  Enjoy the video:

Friday, October 15, 2010

31 for 21 Day 15: Amsterdam International


My personal comments: This absolutely blew me away as I read it!  There is a story called Welcome to Holland that attempts to explain what raising a child with special needs is like.  The one sentence summary is that you bought tickets to Italy, but are taken to Holland instead.  The below is a spin off on that story that gets into the real heart of the emotions that I personally am still going through.  I don't know why I am continually surprised that many mothers have gone through the same emotions as I.  It seems that when you are going through it yourself it is a lonely place as you fear that you are handling it worse than you should be and reading posts like this can really make you feel normal again.  I was given a copy of Welcome to Holland within a few days of Sweet Pea's birth and I wish I had read this right after!  Thank you Dana for writing this!!!

From Dana's blog: 
To fully get this post, please read (or re-read) Welcome to Holland before starting.  Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland."  It is supposed to explain what it's like to have a child with special needs.  It's short and sweet. 

It skips everything.

While "Welcome to Holland" has a place, I used to hate it.  It skipped over all of the agony of having a child with special needs and went right to the happy ending. 

The raw, painful, confusing entry into Holland was just glossed over.  And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time.  And it would sound like this:

Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all. And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

(copyright - Dana Nieder, 10/2010)

Thursday, October 14, 2010

31 for 21 Day 14: Fun Facts

Here are some fun facts that I borrowed from the Narretto Family who borrowed them from Renee at My Special K's.  I hope you enjoy them as much as I did!

DID YOU KNOW?!

* That 1 in 5 children with DS play a musical instrument? For children older than ten, that number doubles. One of five children with DS sing in a choir or vocal group, for children older than ten, it is every one in three...

* Two out of every three children with DS like to draw and/or paint pictures

* Approx. 9 out of every 10 individuals with DS listened to someone read a book more than three times a week between the ages 2-5

* Approx. 7 out of 10 children w/ DS use total communication (signs, etc) between the ages of 2-5

* Approx. 7 out of 10 kids with DS saw a speech therapist two or more times a week between the ages of 2 and 5

* Approx. 1 of every 3 children with DS older than ten rides a bike without training wheels

* Seven of every ten individuals with DS older than ten participates on an athletic team through Special Olympics

* Two out of every five individuals with DS participates on an integrated athletic team.

* According to their families, 3 out of 5 individuals with DS know how to operate a computer.

* One of every three individuals with DS older than ten w/ DS reads the daily newspaper on his or her own

* Seven of ten individuals with DS older than 10 read books on their own for personal enjoyment

* One of two children with DS go to school in a mainstreamed class.

* 3 of 5 children with DS participate in school activities that are open to all students.

* According to their families, 1 of 5 children with DS talk on the phone with friends more than three times a week. For children older than ten, that number doubles.

* One of three children with DS write email regularly

* Two of three children with DS over age ten have a boyfriend or girlfriend!

* Approx. 7 of ten children with DS pray on a regular basis.

* According to their families, approx. 7 of 10 individuals with DS imitate characters from a television program or movie

* Approx. 2 of 3 individuals with DS older than 10 prepare their own breakfast each morning.

* Three of four individuals with DS older than 10 make their own bed in the morning.

* One of two individuals with DS (older than 18) work in a non sheltered workplace

* One of five individuals with DS (18 or older) lives on his or her own

Wednesday, October 13, 2010

31 for 21 Day 13 Part 2: Monica and David HBO Premier Tomorrow

It's hard to believe that tomorrow is the almost here...Oct. 14th...it's the world broadcast debut of the Monica and David documentary on HBO!  We don't get HBO so I'm trying to have a friend record it for me because I really want to see it!  I am so happy that HBO has agreed to air this documentary as I hope that many people who haven't been touched by Down syndrome in their own lives can get a glimpse into the world of DS and how many opportunities exist for people with DS today!

Tune In

HBO 1 & HBO Latino*
October 14th | 8pm ET/PT, 7pm CT
October 17th | 3:45pm ET/PT, 2:45pm CT
October 20th | 8:30am ET/PT, 7:30am CT
October 20th | midnight ET/PT, 11pm CT
October 23rd | 9:30am ET/PT, 8:30 am CT
October 26th | 2:15pm ET/PT, 1:15pm CT

HBO 2*
October 18th | 6:00am ET/PT, 5:00am CT
November 3rd | 8:00pm ET/PT, 7:00pm CT
November 6th | 6:00am ET/PT, 5:00am CT

ACB Radio
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MONICA & DAVID explores the marriage of two adults with Down syndrome and the family who strives to support their needs.  Monica and David are blissfully in love and want what other adults have—an independent life.  Full of humor, romance and everyday family drama, the film uses intimate fly-on-the wall footage to reveal the complexity of their story.  While Monica and David are capable beyond expectations, their parents, aware of mainstream rejection of adults with intellectual disabilities, have trouble letting go.

Directed by Monica’s cousin, the film has a storybook beginning with a young couple full of hope and laughter.  Just before the wedding, a self-assured Monica declares: “It’s all about him, and all about me.  This is my day.  It’s my life, to be with my husband forever”.  By their side are two fearless mothers who realize a lifelong dream—a “normal” life for their adult children.  Marriage for adults with Down syndrome is very unusual, in part because until recently people with Down lived short isolated lives.  In 1983 life expectancy was 25, but today it is 60, with some people living into their 70s.

Although Monica and David’s love is never in question, the honeymoon slowly subsides as the realities of everyday life sink in.  They prepare to move to a new apartment with her mother (Maria Elena) and adoptive father (Bob), disrupting the routine which Monica and David so rely on. In the midst of the chaos, David is diagnosed with diabetes and it seems that the couple will never be independent.

Throughout the story, Monica and David’s capacity is countered by their need for assistance, establishing a vague grey line between adult and child.  But their parents will not always be around, and Monica and David are can handle adult responsibility when it’s allowed of them.  Maria Elena has an epiphany moment, stating: “as parents, we want people to look upon our children with special needs like anyone else…And yet because we want to protect them so much, we are typically the first ones who treat them poorly by subconsciously denying them their rights to have a normal life.”

In the end, Monica and David are allowed to take the first steps towards a more independent life, and with Bob and Maria Elena’s help, begin to explore work opportunities.  At a meeting at Best Buddies, an employment coordinator explains that: “ultimately, it’s about independence, independence with the support.”

31 for 21 Day 13: Wordless Wednesday: Daddy Love







Tuesday, October 12, 2010

31 for 21 Day 12: Another DS Poem

Thank you to Jenny from Our Little Chilli Tribe for posting this:

Down syndrome Creed

My face may be different
but my feelings the same.
I laugh and I cry
and take pride in my gains.
I was sent here among you
to teach and to love.
As God in the heavens
looks down from above.
To Him, I'm no different,
His love has no bounds;
It's those here among you
in cities and towns,
That judge me by standards
that man has imparted,
but this family I have chosen
will help me get started.
For I am one of the children,
so special and few,
that came here to learn
the same as you.
That love and acceptance,
it must come from the heart.
We all have a purpose,
though not the same start.
The Lord gave me life
to live and embrace.
And I'll do it as you do,
but at my own pace.

-unknown

Monday, October 11, 2010

31 for 21 Day 11: Fears Relating to New Child/Sibling

I haven't written about it much recently, but we are expecting baby girl #2 to arrive in early/mid February.  There are a lot of fears that go through my mind with regards to this...

They started out with being about the health of the new baby.  Would we have another "special" child?  I know that the odds aren't good for another "special" child, but heck, the odds weren't good that we would have a first "special" child either.  We did the CVS early so we could stop worrying and just enjoy the pregnancy.  The test results came back all good and that we were to have another little girl join our family.  Then around 16 weeks we did some other random tests that are pretty standard and again everything came back fine.  At 20 weeks I had the full ultrasound where they thoroughly check the baby out and make sure things are developing normally and again, everything looks good.  So you would think that I would be content and happy, but I'm not.

Now my fears are about how I'm going to be able to give Sweet Pea the time that she needs and be able to give a new baby the time that she needs to.  I understand from other typical families that it is hard enough when a new baby enters the equation.  I'm also aware that Sweet Pea requires a fair amount of extra attention and time than a typical 18 month old would so I'm afraid that we are really in for it.  According to the latest evaluations, Sweet Pea is at a 9 month level developmentally so by the time the new baby arrives she will be maybe at 11 months.  Having two kids under the age of one is something that I never imagined I would be doing!  I'm insane, but not that insane!  However, I am also aware of just how good a sibling will be for Sweet Pea (and for the sibling) and that things will work out.  We have wonderful family and friends and I know that when times get really tough and I'm at the edge of the cliff they will save my sanity.

Then there are the fears about how are we going to ensure that baby girl #2 feels special, equally loved, etc.  How do we ensure that we aren't putting too much pressure on baby girl #2 to be the child that we had always dreamed of and that we let her be who she wants to be?  How do we discuss Sweet Pea's diagnosis and make her aware that she is more alike than different, but that it will take her longer to learn new things?  How do we make her not feel or act like her sister's keeper when they will be so close in age and attending the same schools?  I don't want her to resent being Sweet Pea's sister either.

I know that some of these issues exist with typical children as well, but it seems to be yet another area that is magnified when you have a special needs child also.  In a way these fears are healthy because they are making me think about issues and if I'm aware of the potential issue I have a better chance of avoiding it.  However, there is a part of me that would just like to enjoy this pregnancy and the idea of our new baby without all this worry.  I didn't worry much at all while I was pregnant with Sweet Pea so I guess I'm making up for lost time. 

There is one thought that gives me a great deal of peace and hope...the siblings of special needs kids tend to be extra caring and thoughtful as they grow older.  From reading many other blogs I have learned that the siblings can be absolutely amazing!  They advocate for and love their special needs sibling with all their heart.  The fact that Sweet Pea has helped me to become a better person gives me faith that she will do the same for her sister.  That isn't to say that they don't have their sibling moments...but that is just part of being a sibling!

Hopefully by the time this new baby makes her arrival I will feel more confident and at least be ready (maybe I should say more ready) to love and adore a new baby girl, but still give Sweet Pea the love and attention that she needs and rightfully deserves.  Any advice and words of wisdom from other mothers out there?

I love you Sweet Pea & Baby Girl #2!

Sunday, October 10, 2010

31 for 21 Day 10: Down Syndrome Poem

Thanks to The Naretto Family for sharing this poem!

TAKE A WALK IN MY SHOES
by Susan Drumright

I am a kid with Down syndrome. It is not something I would choose. I'd like you to know me better. Would you take a walk in my shoes?

Down syndrome affects my body from my muscles to my brain.
But I'm more like you than I'm not. Come with me and I'll explain.

Let's take a walk together and you can see things through my eyes.
Look we both have Nikes on and we even wear the same size!

As we walk listen carefully, I'll be teaching you about me.
Together we can have some fun, but your help will be the key.

Be patient as I am talking. I often get tongue-tied.
If you can wait long enough, you'll see we're the same inside.

In school I'm often frustrated, learning stuff that's new.
Learning isn't as easy for me as it seems to be for you.

So if you see that I'm in trouble and I need a little clue.
Try drawing me a picture or showing me what to do.

Don't worry if I tell you, "No thanks, I don't want a hand.
" I like to do things for myself. My motto is: "I CAN!"

But you can always help me by cheering for my success.
Just like I'll cheer for you when you score a goal or ace a test.

Smiles, hugs, pats-on-the-back...they all make me grin.
I'll give back all these things to you, multiplied by ten.

My world is full of fun things, like movies, pizzas, swings.
It's great to have a friend to share in what each day brings.

Thank you for walking in my shoes. I wanted you to see.
I really need a friend like you who likes me just as me.

Saturday, October 9, 2010

31 for 21 Day 9: Uplifting Music Video about Son with DS

"So don't tell me what you think he won't do
You have to open your eyes to a better world
Give him a chance, he'll do like the others
Give him some time, he'll move right along
I'm not saying it's gonna be easy
You've got to understand
I think he was sent here to teach us a lesson
Don't mess with God's plan, he's part of a plan"

Friday, October 8, 2010

31 for 21 Day 8: Homecoming Queen

Sweet Pea already has the royal/politician wave down pat so is this in her future?

Thursday, October 7, 2010

31 for 21 Day 7: Therapies

Today is certainly a cheating day, but I believe that Kelly at My Little "Son-Shine" did an amazing job of describing the various therapies that her son, Landon, participates in and I wanted to share.  Kelly has been writing some great posts during the 31 for 21 challenge about the various types of therapies that many children with Down syndrome receive.  Sweet Pea is about 6 weeks younger than her son and receives many of the same services as he does. 

Physical Therapy - Landon's sessions look amazing!  Sweet Pea gets some of what you see during the PT at her center based therapy program, but not the treadmill and no tricycles yet although I know that they do have some there.  Her private PT sessions have been something that we have struggled with for a very long time.  Her original PT was horrendous and her current one is much better, but we still aren't satisfied.  We are currently investigating our options on this front and hope to be in a better situation soon.

Occupational Therapy - Sweet Pea's sessions are very similar to what you see in the photos of Landon. 

Speech Therapy - Sweet Pea's speech therapy sessions that we have been receiving through our insurance have been primarily focused on her aspiration issue.  Only recently have they started to do more with the signs during therapy.  They really don't work at all on her vocalizations.  The speech therapy that she just started receiving at the center based therapy program is working on her vocalizations and on signing so I'm very excited to see what progress she makes in this arena.

Water Therapy - I wish this was an option for Sweet Pea as I think she would thrive in this type of therapy session, but there aren't any places that offer it around us.

With Sweet Pea's recent addition of center based therapy three times a week we are trying to figure out what to do with her other therapies.  We don't want her to be in therapy 24/7, but what is the right mixture?  I know many parents struggle with this same situation.  However, we are in a VERY lucky situation where we are probably being offered too much therapy.  Currently in California and maybe other states, many parents are having to fight for some very basic therapy due to budget issues and so I feel guilty that we are complaining about maybe having too many services.  Having too much and too little are both bad situations! 

Now, I think if we felt that the traditional therapy Sweet Pea was receiving was of better quality then we would be much happier with less, but with a lower quality we feel like we need more of it to make up for the lack of quality.  However, we also look at it as a waste of time because it isn't high quality.  Quite the conundrum!  Her center based therapy seems to be right on track, but since it isn't all therapy, it doesn't give her enough of the various types.  We need to augment it a little...but need to find better therapists.  Fun times huh?!?

Wednesday, October 6, 2010

Tuesday, October 5, 2010

31 for 21 Day 5: Down Syndrome Awareness Video & Great Article

I'm cheating again today by sharing two amazing posts from other wonderful ladies.  I hope you enjoy!

Lisa at Finnian's Journey posted this back in mid September and I thought it would be great for the 31 for 21 challenge:



Thanks Stephanie at Daily Smiles for sharing this amazing article, Down Syndrome and the Divine Chromosome. It gives me enormous hope for Sweet Pea's future and I hope that she will follow in Matthew's footsteps. She currently draws people to her everywhere that she goes...and we pray that this continues as she grows up!

Monday, October 4, 2010

31 for 21 Day 4: Need Advice

Today is a rainy day (can you call it rain if it just spits all day) and Sweet Pea isn't feeling her best.  I'm hoping she didn't catch Daddy's cold, but we will see in the next day or two if that is the cause of her extra fussiness.  I normally really enjoy rainy days, but today I am feeling a bit beat down and want to ask all parents out there for a little advice in the feeding arena.  Sweet Pea has become more and more determined to self feed.  Don't get me wrong, I think this is a great development!  However, there is a severe lack of finger foods that she can handle (chewing wise mainly) and so we are still having to rely on puree baby food and baby cereal for some nutritional components.  Her spoon holding is coming along quite well (better with her right hand than left, but she tries with both), but it's the in between bites time that is really getting to me...
  • We battle over getting the spoon to the mouth with the food still on it - luckily she will let us hold her hand and guide it most of the time (I'm sure that will end too, but hopefully not before she gets better at it herself)
  • Trying to teach her not to bang the spoon after she fills it
  • Trying to teach her not to fling the food by waving the spoon wildly in the air like she is at some rave
  • After putting the bite in her mouth she puts the spoon over the edge of the highchair and drops it!  If we try to stop her from putting it over the edge she then sends it flying backwards!
That last bullet is what is driving us absolutely batty!  We have tried for weeks now to tell her not to do that as we pick up the spoon and try to give her another bite.  I think that we have inadvertently turned it into a bit of a game though!  She does this routinely and there are times where we go through many spoons in a meal before we just give up.  Obviously what we were doing wasn't working.  This morning I came up with what I'm hoping will be the solution...giving her 1 or 2 warnings and then when she reaches the limit of warnings, take her out of the highchair, stopping the meal and explaining why.  I did that this morning and the result was screams!  After she calmed down we went back in the highchair and tried again...only to be repeating ourselves again very soon so again I stopped and took her out.  This time I had to run out to the street to move my car off the street before I got a ticket and when I closed the door the screams really started.  I know now not to have to leave during one of these "lessons"!  When I came back in 30 seconds later she was beyond rescuing and even though we tried to eat some more cereal, we failed miserably.  I was able to get her to self feed 1/2 a waffle though and so I was feeling like we ended okay...not great, but okay.

While I know that we should be happy that she is even willing to put food in her mouth, I can't help but be frustrated today by this ongoing issue.  I am happy that this is very typical behavior that Sweet Pea is exhibiting, but I still don't know the best course of action to stop it.  Do I keep trying the removal from the meal when she does this?  It is going to be very difficult at dinner time because we are on a tight time schedule, but maybe we can avoid spoon feeding foods at that meal and focus this at breakfast when there is a bit more time to deal with it.

Are there any other suggestions?!?!  Help!!!!!

Sunday, October 3, 2010

31 for 21 Day 3: Center Based Therapy Fun

I was able to finally attend another Center Based Therapy class on Friday with Sweet Pea. While I LOVE (really mom I do) that my mom has been able to go and that she has given me great reports at the end of each day that include all sorts of great details, it is definitely not the same as being there myself. Sweet Pea seems to really love being there and I love watching her take it all in!

Here are some photos and a video clip of Friday's class:



Saturday, October 2, 2010

31 for 21 Day 2: ENT Appointment

Sweet Pea had her ENT (Ear, Nose Throat doctor) appointment on Thursday and we got some bad news and some good news.  Let's start with the bad...Sweet Pea has to go in for another set of ear tubes because the ones that were installed in March are finally out.  She has a little fluid in both ears, but no infections.  The surgery should happen by the end of October.  So that was the bad news and it really wasn't all that bad since we were told that her tubes might only last 3 months when they were first put in and it has been 7 months!

The good side of her ear tubes needing to be replaced is that until the new tubes go in we get to enjoy bubble baths and swimming without fear of water getting in her ears!  That may not sound like a big deal to many of you, but since we have been completely unable to find ear plugs that will stay in this little girl, it has really made life a bit more complicated.

That last statement makes me realize that we have two pieces of good news to share from the ENT.  I had spoken with him a few weeks ago when I thought Sweet Pea might have an ear infection and asked him if he knew where I could get Sweet Pea fitted for a pair of Doc's Proplugs.   A fellow mommy in our local DS support group had told me that they were the only thing that had worked for her daughter and I really wanted to give them a try.  The problem was that when I went to their website and submitted a request for who had the sizing kit, all I got back were a ton of surf shops.  I wasn't going to trust my daughters hearing and ears to a teenager working in a surf shop!  That led me to ask our ENT and he said he actually had a sizing kit and he would bring it with him to her next appointment.  I called the day before to remind him as I REALLY wanted these plugs and he was able to fit her into the extra small size.  They might be slightly bigger than she needs, but the smaller size (called tiny) was going to be just a little too small.  Since her ears are growing, we both decided to give the extra small a chance.  I couldn't believe it when he put them in!  They seem like they will be quite easy to use and the best part...drum roll please...they might actually stay IN her ears!  I'll do a full review when we actually get them which I assume will be at the tubes surgery since we don't need them until then.

To celebrate the occasion, here is a collage of her first bubble bath!  18 months old and the girl finally got to play in her very own bubble bath!  Hopefully the plugs will work as she had a blast and I want to do this a lot more.  We will certainly be doing it a ton until her surgery just in case the plugs don't work!

Friday, October 1, 2010

31 for 21 Day 1: Down Syndrome Awareness Month


If anyone has any questions about Down syndrome or about Sweet Pea in general, please post them and I will make sure to answer them during the month.

And now, for the first entry in the 4th Annual 31 for 21 Blog Challenge...this isn't a very creative start, but I really like what some other moms have posted today and so I thought I would do a compilation of their posts.  It seems like a good way to kick off the month since this is supposed to be about Down Syndrome Awareness and not just Sweet Pea.  However, many posts will be about Sweet Pea as she is what our lives revolve around...not Down syndrome.  I can't believe how many of the blogs that I follow are doing this challenge!  I think it is wonderful and I know that I will have to re-post a variety of their postings because these are some amazing moms!

From Adrienne at Our Unexpected Journey:  I'm not too sensitive about some of this as it is a learning process for many of us, but I thought it was a good reminder that we really do need to remember to put the child first.  Bennett is her son and I didn't feel it was right to replace him with Sweet Pea since this was her post.
  • When referring to a child with special needs, please put the special need after the child. So instead of saying he is a Down syndrome child or Down syndrome baby, you could simply say he has Down syndrome or Bennett has Down syndrome or "hey that baby has Down syndrome" NOT "hey there's a Down syndrome baby." I don't know why but when hearing someone say my child is "Down's" or "is a Down syndrome child" it totally makes me cringe. Because, Bennett is so much more than just having Down syndrome. He's a little boy first and he happens to have Down syndrome.
  • Children with Down syndrome most often reach milestones later than typical kids (not normal kids, typical kids-remember, my son is normal too!!;)) because of their low muscle tone. So it shouldn't be a surprise that Bennett may not walk until he's 2 or later. Now you can see why we make such a big deal when he reaches those little milestones and big milestones because yes, it can seem like an eternity to do them but that's okay;)!
  • Lastly, I hope you would encourage your children to play with children that have special needs {if they have a chance} because not only does it help the child with special needs (not to mention their mommy that so badly wants them to have typical peers too;)) but your child will learn compassion, patience and acceptance just by playing with someone that may need a little help. Don't we all want our kids to be kind, compassionate and patient??

From Stephanie at Our Daily Smiles
My daughter will turn two... gulp, this month and I have spent the last two years learning about her and her incredibly interesting extra chrom. I've learned medical facts up the wazoo! I've learned all about the "stats" The expected age of accomplishments.   I've learned all about Speech Therapy and OT and PT and Food clinics. I'm learning about schools and sign language and Music Therapy.  I've read books and talked to doctors and researched until I was dizzy.

And  do you know what the most important thing I found out was? It was the one thing I didn't learn from all the medical info or the stats that I felt the need to memorize or any session with her PT, OT or ST.  I didn't learn it from a book or a doctors office, and I definitely didn't learn it from researching on the Internet.

I learned the most important thing about Down syndrome from my daughter Emilia Faith . She taught me that after all is said and done, she's just a kid. She's just like any other little girl. 
She plays and laughs. She sleeps and poops. imagine that!  She loves to look at herself in the mirror, she loves to be outside, and of course TV, rocks! She listens to music and can keep a beat. She hugs and kisses her baby doll. She loves to eat, Tacos are her favorite along with any kind of pie. If you have an Oreo you'd better hide it, or she will stalk you until your pinned against a wall and have no choice but to hand it over. Her new favorite pass time is bouncing a ball. It simply puts her in hysterics.

She also knows how to throw a whopper of a tantrum, expects her way all the time and has a cheesy smile she saves for special occasions. She hears the word 'NO" at least 100 times a day, and acknowledges maybe one or two of them.    

If you read this any where else you would say to yourself, "sounds like a typical two year old to me". 

Well that's exactly what she is. You see they 're not going to tell you that when they hand you a diagnosis of Ds.