A Cousin's Love and Support: PSDS

On many blogs and messages on various forums, I read the despair and devastation in parents' voices as they retell an encounter with a person who ignorantly says negative views or incorrect beliefs about Down syndrome.  It leads these parents to believe that there are so many people who will perceive their child as less than worth--that these people are family members who will not accept there child.  Their fear is real.  It is palpable because often these horrible comments from these stranger or acquaintances are preceded by "I have a cousin or an uncle is Ds and . . . ."

Ellie with her Uncle Matt at Christmas

I want to tell you, it isn't always that way at all.  No!  Maybe you think I live in a bubble where the world is happy and everyone dotes on my little Ellie.  That is not true.  I know firsthand how people can be cruel.  I know that they can be cruel to people with intellectual abilities, physical deformities, and for instance, those who happen to have red curly hair or is a woman.  Yes, there are people who are completely set in their beliefs, no matter how inappropriate and wrong they are.

Ellie with her Uncle Mark at Christmas

Our children have the power to educate.  Do NOT ever forget that or underestimate their potential to do so.  Their ability to love unconditionally and their never-ending determination to accomplish the tasks that come so easily to others is powerful.  So powerful that once someone gets to know them, they realize just how ignorant they are.  As for those who do not learn, it is their loss.  Yes, it hurts to hear those comments, but it truly is their loss.  For you and I know the blessings of knowing someone with Ds, of raising a child with Ds.

Ellie with her cousins.  See the unconditional love?

Children love unconditionally.

Once upon a time, I had this fabulous cousin (Brendan) and he left us for a far-far away unknown land (England) where he settled down, married a fabulous woman, and had a beautiful boy with the same spunky personality as my cousin.

Far far away, Brendan decides to participate in the Virgin Active London Triathlon.  I know, he is a bit ambitious and my muscles are already sore just thinking about it.  He had his choice of multiple charities to run/swim for.  I shall repeat that, multiple.  He could have chosen any charity (ie cancer, etc) at all and he chose PSDS, which is a proper & lovely organization helping people and their families with Down syndrome.

Brendan writes in his sponsorship letter (I bolded my favorite part):

As I rifled through the options I came across the charity, PSDS that has sponsored me.  PSDS is a charity devoted to helping families and children with Down Syndrome.

As Down has impacted my family I felt that instead of going for the lowest possible target donation offered by some other charities I would try to actually make a difference to one that mattered to me and provided much needed support to families at a time they need it the most!

My cousin is running/swimming for Aunt Peg and for Ellie and for all of the other people and families who know and love someone with Ds.  Now, Brendan has never met Ellie, but he has grown up around Aunt Peg and she impacted him greatly.  He loves her and knows just what a wonderful person she is.  I also firmly believe that Brendan knows Ellie is just as lovely too.

Ellie with her Great-Aunt Peg at Christmas

*I am not asking for money.  I promise!  Truly, I want to show that family can be an excellent source of support and love.  However, if you are so inspired to donate, here is the link

http://www.justgiving.com/Keaneo  1 pound = $1.59

If you would like to learn more about PSDS: http://www.psds.info/

I apologize for the lack of new pictures as well as the lack of Cousin Brendan pics.  You see, we live in a far away desert called Texas and only see family at certain times of the year.  Brendan lives in the UK which is quite lovely, but I have not see him in 5? years.  However no matter how many states or oceans are between us, acceptance is present.  

The Ugly Truth-Help Desperately Needed

As you know, I often write about my friends who are hosting fundraisers to bring home lovies from orphanages in Eastern Europe.  You also know that these places are horrible--the institutions, the orphanages.  Disposable diapers are reused.  Yes, gross.  They wash them and hang them to dry.  Most  of these children only have two outfits.  Some of these facilities do not have running water.  The children may be tied to the cribs.

It may seem that I am exaggerating.  Or maybe you think this video is dated and things are no longer like that.  Or perhaps when I say fiercely that time is of essence, I am, again, exaggerating.

These children do live in squalor.  Money is needed to travel to these countries and rescue these children.  Money is needed for all of the legal fees both within the United states and within EE.

The faster we can help these families raise money, the quicker they can rescue their child from the orphanage or institution.  The sooner these children are united with their forever families, the closer they are to receiving the medical care they so desperately need.

Sometimes, these families are finally united with their children and this is what they are greeted with:

This is Victoria.  As soon as her forever family landed in Atlanta, sweet Victoria went directly to the Children's Hospital for severe dehydration and malnutrition.  Please please please pray for this sweet angel and her family. Follow their journey here.

Still do not believe me?  

Remember Carrington?

She arrived to the US weighing less than 15 lb.  After a hospitalization, she is finally home with her forever family and thriving!  Read Carringtons' Courage.

There are still a few of my friends working nonstop to bring home their children.  Please consider donating to the cause.  Consider giving up that morning latte or coffee.  I know that money is tight so please, consider spreading awareness and praying for these families.  If you live nearby, consider offering childcare as many of my friends need help with their kids while they are in the EE. Or consider donating something to a fundraiser.  Every little thing helps.  Please.

The Smith Family for Phoebe  http://savinganangel.blogspot.com/2011/06/smith-family-team.html

The Kehm Family for Peter.  http://might2save.blogspot.com/

The Eubanks family for Shawna and Lindsey.  http://livingonhopeandprayers.blogspot.com/

These two angels still need families so please spread the word.  

Albina 

http://reecesrainbow.org/albina-15h

Francine

http://reecesrainbow.org/francine1602

Sensory: Heavy Work

Gross Motor: Heavy Work

Ever since Ellie's diagnosis of Sensory Processing Disorder [SPD], we add new activities to her "Sensory Diet".

What do you mean by "diet"?  The Bear Bear says no diet.  Feed me cupcakes!

Sensory Diet:

For some, this involves food.  People place there children on a dairy and gluten free diet.  I have not been able to find many good studies (ie control group, large number of subjects, proper measuring tools) that document the benefits of this diet.  However, I do know that many parents firmly believe it works.  That is fabulous for them and their kiddos.  For us, it did not work nor will I restart this type of diet.  How do I know?  Well, for the longest time, Ellie was on a dairy-free, mostly gluten-free diet.  Not for sensory purposes, but rather due to her random, but severe oat allergy  (we couldn't give her ANYTHING that may have been processed with oats--that included most wheat and barley products-cross contamination) and her dairy intolerance.  She is still mostly dairy free (except for live culture yogurt), but since she passed an oat food tolerance test, this Bear-Bear gets grains.

Our Sensory Diet can be compared to a schedule.  The diet is a list of activities or therapies that are incorporated into the day.  For instance in this recent POST I discussed how to satisfy Ellie's oral sensory cravings.  This is a part of her diet.  Chewy Chewy Chewy.  

We now can add Heavy Work to her diet.  

What is heavy work, you ask?

Excellent question!  

It is similar to making Ellie lift weights.  Okay, not exactly, yet it is a form of toddler boot camp.  Remember my daughter is a sensory SEEKER.  She craves stimuli and needs to feel more pressure than most kids to get that sensory kick.  

Heavy work items:

1. Weighted bag for Ellie to pull of push around.  In this case, I placed pliable weighted balls (1 lb each) into a tote bag.  Ellie drags it around the house and at times will even carry it.

Super Strong Ellie Bear

2. Weighted backpack.  In this instance you start off slow and build up to 10% of her body weight.  That is correct, I make my daughter wear a heavy backpack.

3. Weighted push-pull toys.  Canned goods are recommended because they are heavy and you can easily adjust the weight.  My daughter is strong would LOVE to empty the carts.  I have a healthy fear of my daughter dropping the cans on her tiny feet, therefore, I used the weighted bag .

It sounds like torture, right?  No!  This sensory seeking kiddo loves it.  She searches for the weighted bag on her own.  I just leave it wherever and she retrieves it from wherever.  The same goes for the cart.  She cried when I removed her backpack.  Nope, this little Bear-Bear loves her heavy work.

When does Ellie do her heavy work?

This is a part of her "diet".  Heavy work is incorporated into our schedule 10 minutes before any activity that requires her to sit or focus.  This includes going to a restaurant, attending speech therapy, a doctor's appointment, or working on an organized play task (ie the busy box, or shape sorter).

For older kids, a cyber buddy recommended a trampoline.  Chicka-boom is still too young and needs her cervical spine clearance.  However, I have a feeling a trampoline will be in our future.  As will a weighted blanket (more on that later).

It should be noted that Ellie actually does relatively well in our house.  She is a busy Queen bee, but she will sit and play.  However, at the above mentioned places, she is a wild child.  I still believe some of this is typical behavior.  Toddlers LOVE to explore new environments and new toys. 

Heavy Work: Weighted BackPack Tutorial

We use the weighted backpack as a means of "heavy work" for Ellie's motor sensory seeking.

If you have no idea what I am referring to with regards to "heavy work", read {HERE}

You want to start off slow and then work your way up to 10% of your child's weight.  You can use something simple such as rice or dried beans.  Some people uses poly pellets but those are more expensive and more difficult to find.  I used rice.

You will need:

1. Backpack

2. Ziplock bag

3. Rice/Beans

4. Food scale

You want to find a backpack small enough for your child and preferably with those waist straps to prevent back strain.  I had a difficult time finding one small enough for Ellie and I ended up in the baby section at Target.  I bought what I swore I would never buy--a child leash/harness.  Oh yes, I did.  However, I am not using as a leash.  The leash is detachable and I did just that.  I removed it.  What is left is an adorable bear backpack small enough for Ellie and it clips in the front.  Ellie weighs about 20 pounds and I have the pack straps adjusted as tight as possible.

Measure rice/beans.   Our therapist recommended starting out at 1/4-1/2 pound.  I used a food scale and made sure to "zero" out the ziplock bag.  

Fill bag with rice, seal tightly and secure safely into backpack.  I had to be sneaky and clever.  Ellie cannot know this is really a backpack or she will open it and remove rice.

For our therapy purposes, Ellie only wears the backpack for 10 minute intervals.  She wears it before she needs to be settled down for an activity such as speech therapy, organized play (ie flashcards, shape sorter, etc), restaurant.  again, the mentioned weights and length of times are based on Ellie's specific needs and have been recommended by her therapist.

Most recently, I had Ellie wear the backpack as we walked from the car to Speech Therapy office and then while we were in the waiting room.  Did it help?  I don't think so, but again, we only have ~1/4 lb of rice in it.

Silent Sunday: Barton Springs

Family outing at Barton Springs in Zilker Park

Photo op!  Oh wait, we are missing the Sophie Dog.  Yes, that is Sophie's leash around Andrew's neck.

Not exactly the image I planned to capture

That's better.  I think.  Puppy is looking like she wants to escape the clutches of Safari Andrew.

Sophie got a bath when we returned.  Stinky pond puppy.

Notice that we did not bring the good camera with us. . .Sorry for the photo quality.

Developmental Update: Motor and Communication

Lately, it seems as though Ellie is blossoming before my eyes.  Everyday is something new.  It is no lie when I say that formal Developmental Assessment seems to have triggered a big cognitive jump.  Or, perhaps, it is just a coincidence.

Little stinker is trying to steal my computer mouse.

This past week, I turned a rocking 31 years-old.  I can officially say that I am in my 30s.  Boo!  The Bear, is now 21 months-old.  One step closer to that milestone birthday of 2 years.  A true toddler.  Not a baby.  Although in medical speak, she was not longer a "baby" when she turned one.  WAH!  My baby!  Ellie is a big girl now. Sob!  It truly was a week a milestones and not just in numerical age.

Speech / Communication:

All caregivers are still "mama".  I am mama.  Andrew is mama.  Auntie Jess is mama.  Grandma Dunja is mama. Ellie Bear is, however, stringing a lot of dadadadadas together.  If I actually ask Ellie were Dada is, she looks at Andrew, but calls him mama.  Go figure.

Boom-Boom Chunky Chicken, also wants  to sign.  She still cannot point so her signing tends to all look the same to everyone except the speech therapist (ST), Andrew, and myself.  She is communicating though. 

Last week I attempted  to give Ellie her nasty Augmentin and she shut her mouth and signed "all done".  This is the FIRST time she ever initiated a sign without prompting.  She also used the correct sign "all done" in the correct situation.  Super Bear!

Yes, that is indeed the lens cap to the camera

She is obsessed with "Baby Signing Time" videos. The catchy, yet annoying, "Diaper Dance" song is playing in my head continuously.  Fellow cyber buds, you know exactly what I am talking about.  Bear-Bear walks into the bedroom, stands in front of the TV and signs a combination of "baby" and the macarena.

Ellie's version of "Signing Time"

Gross Motor:

It's Prison Break Time!  Maybe this section should be titled COGNITIVE / CRITICAL THINKING SKILLS.  Seriously.  I go out of town and Andrew teaches my daughter how to scale walls.  Well, not really.  Andrew is requesting immunity.  Andrew was on Bear Duty while I was out East for a quick trip (baby shower and baptism for my new "nephew").  He puts up the baby gate and guess what Ellie does?  This is important because she had to plan this out.  Planning+ execution = critical thinking.

"here, just let me pull this over here."

"yep!  Just like that"

1. Remove Little Tikes chair from bedroom

2. Push chair into hallway and up against baby gate.

3. Climb onto chair and attempt to climb baby gate onto the other side

4. Escape!--except Andrew foiled her plans!  (but not without documenting her escapade first)

"See?  I know exactly what to do!"

I supposed it is time to stack the baby gates.  Nothing can stop The Bear Now!

Now, if I could just teach this bambino how to point with her forefinger and use a pincer grasp!