Ever the Same

Today's post is by Devon of The Daily Dakin.


So kids love music. Dakin is no exception. I love music myself, and am trying to give Dakin a good base in different types of music. We listen to a lot of classical, as I am a big proponent of that type of music making your child smarter, especially the Mozart. I hope Dakin grows up to love the harmony and counterpoint of Mozart, the raw emotion of Rachmaninoff and the beauty of Opera.

But we can't have that all the time, right? When that gets tired, we go to his favorite music--Elvis! He loves it! Whenever "Teddy Bear" comes on, he gets a huge smile on his face. He seems to like Lil' Wayne too, to my horror.

We sing a lot--we have a whole playlist of songs that I'll sing to him while he's going to sleep or while we are cuddling. "You'll Be In My Heart," "The Last Unicorn," "Inchworm" and "Bridge Over Troubled Water" are some of my favorites. We have a secret one too, that no one but us knows--it's an older song that I just love.

I have been trying to get him interested in Matchbox Twenty--they're my favorite group and my heart will just break if he chooses someone else over them. Rob Thomas, the lead singer fot Matchbox Twenty, has done some solo work, and one of my favorite songs of his is "Ever the Same"--I really feel like it represents the relationship Dakin and I have.






We were drawn from the weeds
We were brave like soldiers
Falling down under the pale moonlight
You were holding to me
Like a someone broken
And I couldn't tell you but I'm telling you now
Just let me hold you while you're falling apart
Just let me hold you and we'll both fall down

Fall on me
Tell me everything you want me to be
Forever with you forever in me
Ever the same

We would stand in the wind
We were free like water
Flowing down
Under the warmth of the sun
Now it's cold and we're scared
And we've both been shaken
Hey, look at us
Man, this doesn't need to be the end
Just let me hold you while you're falling apart
Just let me hold you and we'll both fall down

Fall on me tell me everything you want me to be
Forever with you
Forever in me
Ever the same

Call on me
I'll be there for you and you'll be there for me
Forever it's you
Forever in me
Ever the same

You may need me there
To carry all your weight
But you're no burden I assure
You tide me over
With a warmth I'll not forget
But I can only give you love

Fall on me tell me everything you want me to be
Forever with you
Forever in me
Ever the same
Call on me
I'll be there for you and you'll be there for me
Forever it's you
Forever in me
Ever the same
Forever with you
Forever in me
Ever the same

I love this song. It helps assure me that no matter what happens, we will always be the same--Mommy and Daddy and Dakin, no matter what.

Note to Self

b and her asthma

b is a silent asthmatic, which is scary...and sometimes hard for all of us. what that means is that brooke almost never wheezes out loud, which is often an outward sign that something is going on.

brooke's birth mom is an asthmatic and asthma tends to run in families, so the doctors were on the look out early on with her. and her asthma reared it's head pretty early on...

brooke had her first asthma episode at about 12 months when she just turned blue out of nowhere in the car one day. i turned around, she wasn't talking or playing and her feet and hands and lips were blue. she had no other symptoms...other than being quiet and still, which is def not brooke.



since i had my inhaler, i tossed some albuterol in her face and made her scream to suck it in...in about 5 minutes, the color came back and she was back to normal. in the years since, we have learned that when brooke "gets tired" and lays down in the middle of normal activity, when she's been just fine and when she complains of a "tummy ache"...that is an asthma attack.

she had a silent attack at paige's softball game on monday...she laid down on the bleachers in the middle of playing with her friends and started to go to sleep. {big alarm...not brooke}
she said she didn't feel good. i asked what hurt, she said her stomach...
bells and alarms going off!!!

inhaler and air chamber in hand we did her puffs of meds and in about 15 minutes, she was back to normal. there are some things that do trigger asthma in most people, and you should go HERE to read them...

people ask all the time what asthma is...so here's a picture...and it really does the best in describing it. {if you have never had asthma, it's terrifying. you struggle for each breath and you don't feel like you will get just one more breath.}



here's some facts...bc ignorance is bliss, but knowledge is def power, and in this case, could save your life!!

according to the cdc and prevention:

• About 23 million people, including 6.8 million children, have asthma.
• Asthma is one of the most common serious chronic diseases of childhood.
• Asthma is the third-ranking cause of hospitalization among children under 15.
• An average of one out of every 10 school-aged children has asthma.

the EPA has a great site up with tons of info. you want more...go HERE and you'll get tons of knowledge.

and if you want to be involved in the national asthma awareness month events, go HERE and find out if there are any in your area, or set up an event...it tells you how!

not a straight jacket

...no, a compression vest.
but ryan insists on calling it sofie's straight jacket.

so, 45 minutes at a time....

...a number of times a day brings some stability and smiles to a sweet face.

OT (occupational therapy) is a good thing...a very good thing.
sensory integration dysfunction...you get it, you can get a straight jacket too!

********the compression vest is used for a few things. one is pressure throughout sofie's trunk which she desires and strives for. another thing is stability. when she has pressure, she feels more stable. so we do joint compressions and a brushing protocol as needed, but that lasts only a short time. the compression vest is like getting a long bear hug that gives you that happy place. wanna know more? let me know...sensory integration dysfunction or sensory processing dysfuntion is pretty interesting stuff...straight jackets and all!*******

Make Your Day Monday: She's With Me

Only one time before, when I read Welcome to Holland, have I come across something that so perfectly expressed my emotions about being Chloe's mom....

She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
As they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me

I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my week,
Though she can’t speak,
She let’s me know she feels my love when she’s with me

I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me

Here's another video about the song. It's an excerpt of an interview with Collin Raye explaining the story behind the song.

Sickly

For the past 18 months Caleb has battled one illness after another. A few days ago I was rocking him, and I was praying about how I could help him be more comfortable. I started to wonder if I just needed to accept that Caleb is sickly child. I wondered if I was just in denial every time I hope for the current illness to be the last one for a while. But as I thought about it, I realized I'm not in denial. I will never see Caleb as a sickly child because I know him, and he is anything but sickly. Caleb doesn't let his physical limitations impede his ability to be true to his mission on the earth. I will always continue to hope for better health, but I know that Caleb isn't broken, sickly or compromised. He is Caleb.

Dear Caleb, Thank you for allowing me to take care of your sweet little body. Thank you for touching me with your light, even when you don't feel well. I hope that when my body doesn't always cooperate with me, that my spirit will continue to shine the way that yours does. Thank you for showing me who you are. Love, Mom July 12, 2009

Let it Be

This is my personal anthem after last night's incident with Chloe.

Halloween Goodies

Here are a few Halloween ideas that were too good not to share! We hope you have a Happy Halloween!

BHG Peeking Monster

BHG spiderweb soup

my recipes' mini ghost cupcakes

Joy the Baker Blood & Bones

Rhodes Rolls' Spider Dip Bowl

Green Gruel with Eyeballs from Epicurious

picky palate's mummy dogs

Martha's ladies fingers

The Mother at the Swings

The Mother at the Swings

by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.

~

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

Try This Tuesday: Equipment We Can't Live Without

Tara's Recommendations:


Chloe first used a touch screen at an Occupational Therapy visit. She now has one of her own at our house (Touch Window), that was provided by our school district augmentative team. The software that came with the touch screen is interactive and specific for Chloe's age-group. I LOVE it because it helps Chloe with fine-motor skills, decision-making skills, and is helping her learn things like counting, colors, etc, etc.... while having fun! It doesn't get any better than that. =)


We use The Listening Program cd's from Advanced Brain Technologies. Chloe loves listening to the music and its benefits have been proven to help those with neurologic disorders. Before she was approved for the program by an audiologist, we were anxious to do music therapy and started out with Sound Health cd's, which Chloe also really enjoyed (and they also seemed to help with sensory integration!)


We don't have this yet, but I've heard rave reviews from some friends who do hippotherapy with Chloe that the special tomato chairs and strollers are 'can't live without' items. I'm eying this chair for Chloe.



In the meantime, we use the Bjorn Baby Sitter. I like it because it folds up to be flat, so it's easy to take places when we need to have somewhere to sit her, but don't necessarily want to take the bulky wheelchair or stroller.


Danyele's Recommendations:




Z-vibe for picky eaters who need a little help with strong tastes or oral defensiveness...it's fun and the kids love it. You can add flavors to the tip before meals or during meals, use it for introducing new foods or for those that the kiddos don't like.



My kiddos have all benefited from the Wilbarger Brushing Protocol. It has calmed them and helped them focus and brought them to a place where they can enjoy things instead of being stressed.

The play tunnel from IKEA (less than $20)...perfect for getting the kiddos on their hands and knees for good gross motor skills and heavy work. We put "rewards" or fun toys at the end of the tunnel to get them through.

Keri's Recommendations:



First is Logan's P's and Q's Chewy Tubes. Kinda funny, I had these chewy tubes for over a year and he never touched them no matter how I disguised them. All of a sudden, one day something clicked and now he LOVES gnawing on those darn things! So much that he chewed through the Q's squiggly majigger. Time for some new ones.



Second is his Freedom Concepts Bicycle. Only the best bike on earth! The support and ease of this bike makes riding a bike enjoyable for the kiddo and it's NOT WORK. One of the best features for the parent is the ability to steer and brake from behind. Kiddos have the capability of steering and pedaling all by themselves as they gain the ability. I could literally rant and rave about this bike night and day. If I only had the time, I would!


Heidi's Recommendation:



There are lots of "can't live without" items in our house. For me a main thing would be Junior's overhead lift. The lift is a portable overhead system called the easy track, the motor is called the Voyager and is made by Guardian. He has a set of the legs in his bedroom and also in our living room. There is ten feet between the legs so plenty of room to wheel his chair underneath for lifts or for him to get on his bike or just hang out on the floor.


Becky's Recommendations:

His swing is an indoor swing and it's probably my most favorite luxury item for Ben. My kids climb in with him and love to swing away. Available from South Paw Industries.


His jogger stroller is a handicap built one and I love it more than his wheelchair because it can go EVERYWHERE! His wheelchair is really made for smooth surfaces, not outdoorsy ones and so we end up using that more.


Colleen's Recommendations:



We use the hensinger for more head support. The hensinger has been great to use with the carseat, stroller, tumbleform chair, etc. We cover it with fancy knee socks or leg warmers for a more stylish look.




I love the Svan High Chair. The seat height and depth is adjustable same with the foot rest. It grows with the child.


Kennedy loved the Kaye Reverse Walker. She could walk and stand holding this. It was great for her to get around. Gotta get the handle though...it is a back-saver for the caregiver.



We love the infinity feeding pump. It is portable, small and light weight. It can be used on an IV pole, by itself or in a backpack. This has made tube feeding so much easier. The only issues we have is that the cover that closes sometimes has broken. We use a medical company to get all our tube feeding supplies, so we have been able to just trade. I would definitly prefer to rent vs buy because of this issue.



Another thing we liked, but currently do not have to use, are farrell valve bags. These we used while Kennedy had a gjtube for gastric pressure relief. These we did some homemade covers for as the contents are not pretty.



Amber's Recommendations:

Brandon also has the best carseat in the world [the Britax Traveler Plus]. Without it he would slump down in his seat and cry because he was so uncomfortable. What is different about this chair is that it is made especially for special needs with extra cushion and head support. It is like the carseats of all carseats... its our cadallic for Brandon.

I would be one back hurtin momma if I did not have this Bath Chair. When Brandon turned a year old it seemed harder and harder to get him in the tub and out. So we got a Bath Chair and they are great. It lays on the bottom of the tub or on a stand. The back lounges back all the way or you can have them in sitting position. This chair is awesome for something as important as a bath.


Ashley's Recommendation:


We have lots of equipment, but by far our favorite is the newest: Clayton's bicycle. Clayton had been asking to ride a bike for a while, but we knew he would need a modified one. Then he actually won one at our church's Easter raffle! Brian did his best to modify it so that he could somehow ride it, but there was no way he would ever feel "independent" on it. We started researching adapted bikes online and found this one (Triad) at adaptivemall.com. It took a month or so to actually get it once it was ordered since they are made to specific order, but it was worth the wait and the hefty price tag!!! On the very first day, he learned to propel himself and within a week, he could steer it by himself! It's given him such a sense of independence--he loves it!! It's great exercise for both his legs and his lungs, not to mention great occupational therapy for his hands. Was it expensive? Yes. Was it worth it? YOU BETCHA! The look on his face when he's totally in control of where he is going is PRICELESS!


Beth's Recommendations:



Sure Step SMO ankle braces (http://surestep.net/media/pdf/SMO-trifold-brochure.pdf). These were a great alternative to a bulkier AFO. They were very lightweigt and fit into way more shoes than some of the alternatives. And, sometimes, even a cute shoe makes the littlest of ladies feel pretty. More importantly, they seemed to have done the trick and give her the support she needed to walk, and from what her pediatric orthopedic surgeon tells us she really "looks good". Currently, her doctor (orthopedist) and her physical therapist are going back and forth as to whether or not she even needs AFOs anymore. Given their reasons, our own research, her progress, and our 'gut' feeling, we have decided to let her try it on her own for awhile. Things are going great!

Benik wrist/hand splints (http://www.benik.com). Betsy's wrists deviated pretty badly for the first year or so of her life. We put these on her for naps, and bedtime, and any other 'down time' and by 18 months or so, she didn't have to wear them anymore. For awhile, her wrists would deviate when she was tired, but now I don't notice it at all anymore. They were hand-washable, and could be re-molded as she grew.



Pediatric reverse wheel walker. This little device was awesome. She may have only used it for about 6 months, but it really gave her the confidence she needed to go it alone. She has been walking for a little over a year now, completely independantly. Towards the end of her journey with the walker, she would CARRY it up off of the ground while walking. That was our sign that she didn't need it anymore. WOW! That's double the work if you ask me!




Prentke Romich Springboard (http://www.prentrom.com/springboardlite). This little puppy is A.M.A.Z.I.N.G! Betsy is still learning the ropes of the Sprinboard and working on her fine motor coordination to push the buttons, especially in the smaller cell settings, but it has really given her the communication outlet she has been yearning for. Right now, we use it for simple games, books, basic routines, and school lesson plans. It is really a profound thing to watch her lead a game of 'Simon Says' with her sister and brothers, and they love that she can do it, too. You can also download your own pictures for the cells. So, there could be a whole page of your family members, or kids that your child goes to school with, etc. This gives her a really functional association which is fantastic. This is by far my favorite piece of equipment we've encountered. She loves it!


What are the 'cannot live without' items in your house? Please share!!!