Friday, May 20, 2011
Do not use the free two week trial link just go to register and enter the coupon code: learntoread. Enjoy! :)
Thanks Renee Garcia for sharing this!!
Also, I will have the owner of this site on to spotlight their free resources, but here's a peek at BabySignLanguage.com
I think we under-sell life. I know that we live it with callousness, unless we are flayed open somehow to really take in its miracle.
Last night, two friends posted some thoughts on Facebook, in seemingly unrelated stories.
The first posted that "Walking in the woods makes me wonder if it were not for the pain in my life making a contrast, I may of never grown eyes to see the smallest bits of glory all around me." I responded in kind, " You can't appreciate light without the shadows...I've certainly found it to be true..." I'm sure I read something like that somewhere and I'd like to give credit, but I cannot find it.
Then a second dear friend posted a link with her heart full: "Sharing this is an attempt to remove some of the clutter from my brain. I saw this article today and it broke my heart on so many levels.
Four years ago we faced a similar situation. We knew our son could be born with heart defects, seizure disorders, low muscle tone, eating difficulties, hearing loss and/or other medical complications. We knew we could have an infant for life and yet we chose differently." And then she linked THIS ARTICLE.
I cried. And cried. And mulled and mulled. Last night after reading the above article, I remembered THIS ARTICLE and sat and thought about the choices and the final consequences. On one hand, even though the mother defends her choice, you can hear her heart breaking. Whereas in the Devinck article, he celebrates and treasures the memories of his brother.
I posted a similar thought awhile back...and since that time, the family I spoke of has had that baby girl...and she is, in fact, rocking the bonus chromosome. And you want to know what? She is adored, loved deeply, celebrated, and she is already touching their lives richly.
I have been faced with the dilemma of life or abortion, and I was able to make the right choice. I chose, backed not with "lofty ideals", but with a knowledge that God doesn't mess up, he blesses. I am not sitting in ugly judgement of those who have chosen abortion, but in sadness at the deep pain that stays with them.
Do I wish that Elise's life was easier? Yes. Do I wish that my life was easier? Yes. Would I trade in the life that we have lived for an easy one? No.
In having Elise, living with the Down Syndrome, the Cardiac Failure, the myriad surgeries, the cancer and chemo, the sensory "freakiness", the ADHD, the impulsiveness, the stress, the worry, the "complications"...I have gotten to see the joy, the blessings, the beauty, and the peace in life. I have gotten to see people reach beyond themselves to give. I have gotten to see the magnitude of miraculous answered prayer. I have seen God say no. I have gotten to appreciate His wisdom. I have gotten a glimpse at the "Much-ness" of God, Himself.
So, I believe that the idea of having kids that are not "perfect" actually
underscores the truth in the first quote. In the darkness of not "a perfectly healthy baby", I have seen the blinding brightness of His Light. I treasure the stars that sparkle in the darkness. I am thankful for life.
Wednesday, May 18, 2011
Tuesday, May 17, 2011
HOWEVER, I had to brag a tiny bit. Elise actually allowed some things she usually bucks horribly over. At the Cardiologist, she willingly let them put on sticky tabs and wires on her for the tests, and she let them use the ultrasound goop and wand on her chest all of which usually makes her five shades of crazy.
THEN following up with the oncologist (cancer doctor) she let the nurses take her blood pressure which has been a BIG FAT FAIL, every 6 months, for the last 3 years. She screams and wiggles and messes up the electronic reader, and the nurses have given up after 5 or 16 tries (depending on their persistence). She also has been irrationally afraid of the height measuring tape, but today she stood up against it, adjusting her feet and head the way she was requested, completely cool with it.
You may look at the list of the victories and roll your eyes at me. But I assure you that this is a big stinking deal!!! There is usually MUCH screaming, spitting, and growling by the Baby Girl, which necessitates me utilizing advanced wrestling techniques to pinion her.
I got a comment on my last post from "RXRAD" saying that they "didn't know autism was in the mix"...Simply put? I have no idea if it is or not. Sometimes, I will confidently say that it's not. But we have indisputable sensory issues (defensiveness and craving repetitive and pressure input), impulsivity, inappropriate social interchanges, aggressive behavior, freaky obsessive organization/categorizing of toys and groups of items, lots of activity repetition, her speech is seriously delayed, and she has extreme sensory soothing behaviors... These all could contribute to a spectrum diagnosis, but because she is also developmentally delayed, some of them could be explained away by that...But in the service dog situation, an autism dog trained to handle her behaviors is what is necessary to meet her needs...
A VERY organized Puppy Parade
However, today after her blood draw which ended up a two part attempt requiring 2 nurses and me all but sitting on her, she found a Bic Pen and clamped down, craving the input for self-soothing...There are certainly some behaviors that make me continue to keep a watchful eye on it...
As soon as it was over, screaming and biting and bucking aside, she hopped up blowing kisses and hugging her nurses...she had forgiven them and she never holds a grudge against her medical professionals...no matter the dramatics that take place.
Amelia came up to me and told me that I smelled like the doctors this afternoon, reminding me of my own associations to the hospital soap...I wonder how her scent sensitiveness will impact her own memories and reactions...
I will let you know how the labs turn out, but I wanted to celebrate some of her maturity from today! Cheer and hoot and holler when you can, Folks!!! :)
Saturday, May 14, 2011
Lately I feel like I’ve been putting out a lot of fires. Doing waaay too much research and pondering consequences of decisions based on that research.
The sad part is that I don’t know if I am that much further ahead even here after a couple of weeks.
Elise has been feeling “off” for a few weeks. She has chronic issues with croup and has been having headaches. Behaviorally, she is been very emotional and weird. Disinclined to do her work, and disinclined to do much but beg for food and watch 17 movies in about 16 minutes. She’ll load up a movie and then decide that is not actually what she wants…and repeat…and so on…and make me lose my mind…ad nauseum… This, coupled with GI issues and the headaches, and I was driven to take her to the pediatrician. The good news is that she doesn’t have diabetes! (Can you even IMAGINE the wailing and sadness, daily????) The “Meh” news? She probably has TMJ that is causing her to grind her teeth and get headaches. (Considering that the first place my mind went was a tumor? This isn’t so bad. With a history of cancer, panic at that level is pretty standard.) The bad news? We still don’t know anything, and will be running a couple extra tests at her oncology/endocrinology visit…which, honestly, was pretty true to what I expected out of this pediatric visit… And so we wait…
Research and Conundrums:
Elise has also managed to figure out all of the latches for the fridge, the pantry, and the bolts on the doors to the outside of the house. Yeah. That’s right. Feel the cold panic well up in your heart. Aahhhh!!!
I am now considering eating out exclusively (yeah, right), buying key locks for 4 doors (million $!!), and buying padlocks for the pantry. The stop gaps, that I will be practically attempting are placing “STOP” signs on the fridge and the pantry door and putting a button lock French door handle and installing backward. I will then have to open it with a hair pin for the rest of time…thankfully her fine motor skills will be in our favor for a little bit…
I found out about 6 months to a year ago, that Elise’s diagnoses qualified us for a handicap parking tag. At first, I felt like this was something that we certainly wouldn’t need. Then, I started thinking about how convenient it would be. Recently? I have wound up sweating from the stress and physical effort of GETTING to the store. From her Stop.Drop.andFlop abilities to the arm-dislocating-body-jerking efforts to run away…I am thinking that it is more of a necessity and less a luxury. I have no desire nor need of it much of the time, but as the summer yawns its hot maw in my direction, I feel panic rising. I picked up the application this week after a phone call to my pediatrician, to see if he felt that it would be an acceptable option. He encouraged me to do it…so I sit with it blank on my table still struggling…
I am also pondering on the possibility of a service dog. Uhhh. That is a sentence that promises both stress and peace. And I am still at a loss of which it would be. Elise has proved her on-going gentleness this year. In the past, I don’t think it would have been a good idea. Lately, she is precious with our outside dog. Trigger is a calming influence on her mental state. Her hippotherapy is acting as a psychological agent as well as a physical and occupational therapy.
She will do anything for her horse, as I have mentioned before. She works and responds for animals with far more effort than for any ole humans.
This idea was prompted by meeting a dog that was being trained at Gabriel’s Lacrosse game. Elise was infatuated and sat and tickled his ear for the entire time I was speaking with his trainer. Of course, to get an autism dog, that would be trained in the jobs that would be a best fit for Elise, costs quite a bit. And my husband complicated things by requesting a standard poodle or labradoodle, because honestly, what with allergies and hard wood floors, the idea of a somewhat hypoallergenic animal certainly is a huge seller.
Well, believe it or not, I have found a (fairly) close by poodle autism dog trainer. Now I am faced with the complication of whether I want to fill out this application. If we actually got one, then we have to afford it. AND it’s like signing up for another family member to feed, groom, care for, make behave, and transport everywhere. SO I sit mulling and praying. Any experience or thoughts, PLEASE feel free to sound off…
I crave the idea of the dog for a calming agent for Elise. A dog trained to keep her home and safe is certainly looking more and more important. She loves caring for animals and adores petting and fiddling with hair…but would the work outweigh the safety benefits? *sigh*
SO you are now updated on the craziness that is my life. Seriously, I will listen happily to any well-meaning advice… But if you would murmur a prayer for wisdom on our behalf, it certainly would be appreciated.