Saturday, July 30, 2011

Email Subscription!!!

OH, YEAH!!! I officially figured out how to do the email subscription thing. It is now up and running at the top of the right hand column!!! Yay!!

Just thought some of you would be pleased to know!!

"But I'm Hoooongry"

As, I've mentioned before, Elise will eat anything that is not nailed down. But we are having new problems. Not only will Elise rake food out of the pantry and fridge, but now she does so constantly and whines about it even more. She's always "hoongry".

We discovered that there was a broad definition of hungry when we were on vacation. She was "hoongry for the beach", there and so we learned that it also can mean, "I want".

The situation has become somewhat more...More. *sigh*

Now she is never satiated. Ever. She is always hungry. She is never full. Or, rather, I should say she is never aware that she is full. It is beyond frustrating.

She is pudging a bit, and it scares me. Many people with Downs tend to struggle with weight loss. As we all do, of course, but as their bodies are often not as coordinated, their exercise options can also be affected. Elise cannot swim or bike or, well, you get it. Developmental delays can affect their options as well. Many of them also have an inability to sweat, or are on medication, or have other medical conditions as well...

I am trying desperately to figure out her situation. Is she eating too refined food? Not enough protein? Does her inability to feel pain appropriately and general sensory issues affecting her ability to feel full? Is she eating emotionally? Struggling with frustration/depression? Is her ADHD medication affecting her appetite?

I am trying different combinations of food. I have quit buying crackers. We are trying to get out and get her moving, too. I may start brushing her again.

I even emailed my guest blogger from back in November whose son has Prader Willi Syndrome hoping for some tips. Unfortunately, the advice was more "lock everything up" than "here is how to magically fix it"...which I admit I was hoping for. She did offer a suggestion, though that has been helping a little. A snack schedule. Even though it doesn't change the situation, there is a measure of security for them, and you can tell them, "Sorry it's not 10, yet" or whatever...Elise likes knowing that she can eat when the alarm on my phone goes off. Interestingly, sometimes she will go off playing and actually forget, thanks to the security that she will get a snack, soon. So, at least that is helping!! Thanks, Lisa!!

This is the first time my Down Syndrome Patchwork books have failed me. (Neither Nutrition NOR Medical) I have to say it was terribly disappointing.

SO, anyway, Tiffany's Science Theater is back at it. I am hoping to have a solution, but at least I've discovered that I am not alone. There is a THREAD discussing this very problem on one of my favorite discussion boards, BabyCenter's Down Syndrome Board. And you lovelies encouraged me on Our Facebook Page. Thank you for that!! As I figure out solutions, I will certainly be posting to share the you some of the crazies!!

Wednesday, July 20, 2011

Sign, Why It's Important, and a Great Resource!

Elise has been seriously delayed in speech. I mean really, REALLY delayed. Many of her friends have developed speech slowly, but have been close to their typical peers, with some pronunciation/enunciation issues. Elise's speech is more like a 2-3 year old and she is 8. So, you can see, if you looked back, how the speech would decrease by age to be virtually not at all, at stages where others would be chatting away, and she would have nothing to go on.

At first, I really believed that if we just kept talking to her, and modelling proper speech she would pick it up, and improve eventually. In my head, "eventually" would be a matter of weeks and months rather than years. After a while, it became apparent that it was not going to happen. I had always been afraid, that Stubborn Creature that she was, if Elise decided that she liked sign language, she would choose not to use her voice to express herself.

Then she started to get REALLY frustrated if we didn't know what she was trying to say. Her single word association games were not cutting it the more advanced her ideas got. She started acting out at school and against her siblings for not listening better.

So we decided that communication was far more important than the how. After all sign was certainly not baby-talk and it was a language in its own right.

So we started really working on signs for her needs and wants. Her sign vocabulary really started taking off. She became significantly less frustrated and surprisingly, we actually started to get a lot of words along with them. And most importantly, she grew in confidence and her frustration and anger dissipated.

At school not many of her friends knew sign above simple baby signs for "more" or "eat" so she started to use words with her signs for their educational benefit and her dependence on the signs lessened somewhat. I frankly regret that, because the signs seem to meet her at a different level than speech, she has a real propensity to pick them up. Now she uses speech primarily. Many of her speech therapists believe the same as I used to, in my ignorance. If she had had speech therapists who had a better knowledge of sign language, I believe that her communication would be stronger and she would probably use more sign.

This is not to say that school is primarily responsible for teaching/learning sign, but I believe it should be more responsible for using and supporting it. We used it a lot with her at home, but because of the peer pressure not to, she doesn't use it much. (As a matter of fact, our dog responds to signs, even without words!!)

Elise is still a fan of Signing Time, Baby Einstein's signing DVDs, and general use of sign. But I cannot emphasize enough, how very freeing any real communication becomes and the confidence that is an outgrowth of that empowerment.

This story is to tell you just how very valuable sign language can be to kids with development delays and speech problems.

When Mey contacted me about her website and tools I was terribly excited and asked her to put together a write up about her resources and allow me a guest post. So here is Mey to tell you about her great website:

"Signing For Babies with Down Syndrome-Finding Joy in Alternative Communication

Learning new ways to communicate for parents of a child with Downs Syndrome is
always exciting and full of hope. Sign language for babies is an effective way to teach
your child the joys of communication.

Downs Syndrome is characterized by developmental delays that can impact many facets
of development, from motor skills to speech and emotional interpretation. In years past;
parents yearned for a way to correspond, but were often disappointed with some of
the approaches used. The developmental delays associated with Downs Syndrome can
be frustrating when trying to build a solid foundation for communicating. Episodes of
frustration often confused with temper tantrums demonstrated by children with Downs
Syndrome stem from the inability to communicate. That is where the benefits of BSL
come into play.

Baby sign language is a solution during the transitory period as your child grows,
and creates a means to communicate until he begins to make progress with oral
communication. In recent years, advocates for BSL have garnered support from the
medical community acknowledging the positive attributes of teaching BSL to children
with developmental disabilities. Numerous studies have shown that implementing the
use signing in children with Down syndrome is advantageous when used in conjunction
with conventional speech therapy. Although there are some speech delays, the ability to
express themselves through movement is not as restricted. Often motor capabilities are
developed before the capacity for speech. When a child is taught BSL, it offers a positive
method of expression and correspondence often resulting in a happier more responsive
child that is eager to learn and engage with their surroundings.

Baby Sign Language is simple for a parent to teach. The first step is to decide on a few
words as a place to start, try to begin with no more than five words. You can begin
signing as early as you wish but you are most likely to see results between 7th and 14th
month. The key to successfully teaching BSL is contextual repetition. Every time you
perform the task for your chosen word, be sure to sign it at the same time that you convey
it verbally. The most helpful piece of advice anyone could offer when teaching sign
language is to be patient. It could take several weeks and most likely months for your
child to sign back to you. Even though, they may learn to understand the signs, it could
be a while before they respond, so do not give up, be persistent and delight in the journey
as you learn together.

The wants, needs, love and joy shared by you and your child should not go unexpressed
and remain prisoner by perceived and real boundaries imposed by their disability. There
is always a workaround and baby sign language offers just that. Know that you are not
alone in this road. Your pace may be different but you will find many friends and much
love in your walk. Encourage and be encouraged. If you need someone to talk stop by
Baby Sign Language Facebook Community and join the conversation.

You can also visit and read their baby signing blog for
encouragement and guidance or download all the free didactic resources available for
your use."

I am very impressed with the wealth of information and resources on the Baby Sign Language website and their Facebook site is a pleasure as well. I hope that you consider sign language for your child as a tool to help them communicate, whether they have disabilites or not. Certainly go see what Baby Sign Language has to offer. Give your child as many tools to share their thoughts as they can, and you will encourage their expression and confidence.

Monday, July 18, 2011

GQ, Where Are Your Editors???

GQ. Wow.

GQ Magazine is doing their very best to offend some of the most down to earth people they can. I am not terribly upset in a personal way, because they don't appear to be dabbling in reality...but wow. They will unfortunately influence someone else who doesn't dabble in politicians perhaps? THAT is where my anger and irritation comes in. They have already withdrawn their comments on Down Syndrome on their web edition...and adoption...yeah, there is really a group of people that need to be brought to task....ACK!!!

Where the heck are their editors for FACTS and not offending people????? Or are reasonable, giving people now allowed to be mocked and crucified?? And those with chromosomal disabilities are fair game??

Down Syndrome:

Boston Herald's Commentary


GQ Themselves!

Thanks to Brian Skotko of Childrens' Hospital Boston and Brianna of the blog: "Just Showing Up" for bringing these to my attention. They had fantastic comebacks, so I'm going to let THEM answer for me today...Do open their links!!

Wow. I can barely comprehend how, in today's society, these came to be printed. And I am just slightly shy of the midevil throwing down of the gauntlet...

Tuesday, July 12, 2011

Why I Am Planning to Pay More for Groceries.

Just about any time you turn on the TV you will have someone fussing about the economy. It's enough to make you quit watching the news. Like it's not stressful enough to re-budget and be trying to eat healthfully and be paranoid about the effects of all the new have to hear about food price increases and the newest concern about corn.

As if I wasn't increasing my food bill enough by trying to go more fresh and natural. (See Sticky Elephants, if you want some of our new favorite recipes!)

I will be paying more for my groceries, but not because food prices are increasing or because I am eating better-for-us-foods. It will be because I will be changing where I am shopping. I know you totally care. But this came as such a shocking realization and if it took me so long to figure it out, I thought I might save someone else a few heart-rate increasing, nausea inducing, sweaty shopping trips.

Elise doesn't grocery shop well. It is stressful for me to realize that I need to go. I have been know to wait until we seriously don't have anything edible in my pantry for supper. Unless we run out of peanut butter. But I managed to side step that a few times...this is a friendly, special needs parent secret, okay? Don't tell anybody. I will call ahead to the pharmacy at CVS and see how busy they are. Then I will beg them to get me random things from their main store part, and ask them to bring it to the drive through. MIND YOU I NEVER COME IF THEY ARE BUSY. But if they say that things are handle-able, I will ask, with the preface "You can totally say 'no'!!", if they will bring me baby wipes or PB or Tylenol. I confess to doing this monthly or every two or so, not weekly! And I always cap it out at 3 items. Never more than that, although, it's usually only one. I only did it at my old CVS for a long time because they all knew me by name, but now I will do it at the CVS near me, too. I always thank them profusely and tell them that they are now my personal hero. Which is NO exaggeration.

Yes, I definitely am digressing as usual. Sorry. Anyway, grocery shopping involves keening and growling and spitting and the angry goose step. Yes, I've tried rewards and consequences. Yes, I've tried my iPod, a Leapster, books.....please don't offer me advice...I've tried it all. I get LOOKS from my fellow shoppers. I am sorry for this (Truly, TRULY sorry!!) if it gets on your nerves, but sometimes I just don't have a choice. I tend to sweat profusely and may keel over with a heart attack from stress one of these days....

Now to the point. Elise doesn't mind Publix as much as Kroger. Or Walmart. Or Ingles. She likes Target and likes Publix to a lesser degree. I used to think it was the toys at Target. But the mind-blowing conclusion of this week is...wait for it... THE LIGHTING. Yes. I'm serious. We know that she has sensory issues in addition to the Downs. She'll walk through crowds with her fingers in her ears chanting "loud.loud.loud." She will wear shoes based on how they if it crunches "right". Yeah, this list can keep going. But where the lighting and colors are warmer and not florescent, she shops much more happily. She doesn't go straight the keening. Publix has "yellow" lights, so does Target. Neither one uses blue and white. I noticed this for the first time about 3 weeks ago and have kept the "testing" on-going and it hasn't failed me. It has happened at every time of the day, nap or no nap, meds on board or none, morning or evening. The only factor is the lighting or colors or some combination of the two.

Crazy right?

I will keep testing, but I have been shocked at the consistency of this discovery. If you find it to be true with yours, message me or comment, okay? I always love proof that I am not insane.

Thank you for joining me on Science Theater brought to you by Tiffany. Let me know if it works for you!

Another Blog Recommendation

Hi. Long time no blog...but I am counting on you having summer and holidays and friends and family....and *gasp* Well, you know. Maybe you won't realize that it has been almost 2 weeks since I was here....

Last night, thanks to a friend, I discovered a new blog. And read, and read, and read....and totally destroyed my getting in bed early...and therefore my getting up early today. But it was totally worth it. You need to read it. I don't care if you have a loved one on the Spectrum or not. It is really fantastic. It is totally applicable to Down Syndrome, Autism, Sensory Defensiveness or any other of a host of special needs.

THIS is the series that jump started my addictive read. And THIS is why I kept reading into the wee hours...

Really, you need to check this one.

MOM- Not Otherwise Specified

Friday, July 1, 2011

Victoria 6-30-11

I got to snuggle Victoria on Wednesday night, as planned.

She is a precious girl. She is truly soaking up the love and stimulation that is now (finally!) being offered to her. In the orphanage, she was in a laying room. These rooms are so called because the children lay there alone, often sedated, with virtually no interaction at all.

The caretakers in the orphanage told her mother that "she was like a plant". That she was not intelligent and would never be.

I am here to tell you, confidently, that she has A LOT going on behind those beautiful blue/gray eyes of hers. She played a very quiet game of peek-a-boo with me on Thursday morning. No smile, but her eyes got brighter and brighter with every repetition. She is also a very observant player. She watches everything like a hawk, turning the toys offered to her over and over, looking at everything.

She tucks into your neck listening to your heart, sucking your love from you. I swear you can hear her heart growing with hope if you listen hard enough.

She looks like she will be getting to go home sooner than was originally expected. They put in an NG tube while I was there and it settled well and they are confident that it will help her gain the needed weight. Although, after 8 hours after I got there, she finally decided to drink a bottle of Boost. I have NEVER seen a bottle go empty so fast in my life. EVER. (And lest you think I do not have experience, I have babysat, worked childcare, and I have 4 kids of my own!) It seriously looked like a cartoon or a special effect on a movie. *Zhoooomp! GONE!!* If she decides something, she doesn't do it by halves!!

Catherine, Victoria's mother, said that after they go home, meals and a little care-taking support would be wonderful.

I will post up links to a care-taking page and a meal sign-up page on Facebook this weekend, I am still setting them up. They have had people sign up enough to take care of them through the 5th, when I talked to Kelly last night. Lots of thanks, if this was you!!

Don't forget to be praying for Victoria and her sister Francesca and their family. They will both have a lot of adjustments and physical battles ahead...but after meeting these tiny girls, I can assure you, they are fighters!! And now that they have hope? Look out world!!