You Are For Me

I love this song. I can't hear it without crying. It always reminds me that someone else is in charge. Someone bigger, better, and with more knowledge. Someone who is on my side and He is for me. He loves me. He wants what's best for me. Sometimes in the craziness of doctors, and bad news appointments, I get lost, but then I listen to this song, and it brings me back to reality. He loves me. He knows me. He is powerful. He sees me. But most of all He is for me.

So faithful,

So constant,

So loving and so true

So powerful in all you do,

You fill me, You see me,

You know my every move,

You love for me to sing to you,

I know that you are for me, I know that you are for me,

I know that you will never forsake me in my weakness,

I know that you have come down,

Even if to write upon my heart,

To remind me who you are

So patient,

So gracious,

So merciful and true,

So wonderful in all you do,

You fill me, You see me,

You know my every move,

You love for me to sing to you,

I know that you are for me,

I know that you are for me,

I know that you will never forsake me in my weakness,

I know that you have come down Even if to write upon my heart,

To remind me that I know that you are for me

I,know that you are for me,

I know that you will never forsake me in my weakness,

I know that you have come down Even if to write upon my heart,

To remind me who you are

Beautiful Inside

A song for all our special girls who shine so brightly and are beautiful inside. I love the unique sound and the lyrics!...

Oh miss thing never bend or break
You fall down to fly away
All your crazy crazy days filled with love
You happened on your way to find
The perfect way to blow my mind
Oh you sweet little pretty thing called love

Hi ho, that’s the way it always goes
I know your beautiful little girl you’re so
Right oh, you’re beautiful inside
Singing sweet sweet songs in the meadows
To the bees and the birds and the fellows
I like the way you shine

Bright as only bright can be
Making your own melody
Oh you’re such a sight to see, fill me up
Out the door and back again
Where you go and where you’ve been
Oh you sweet little pretty thing called love

Hi ho, that’s the way it always goes
I know your beautiful little girl you’re so
Right oh, you’re beautiful inside
Singing sweet sweet songs in the meadows
To the bees and the birds and the fellows
I like the way you shine

Fall is Here ~ Adaptive Crafts!

If you haven't met Heidi and Junior yet, you need to head on over to Adaptations 4 Kidz and/or Junior's Amazing Journey. They are fantastic! And so are these fun fall crafts they've done together. (Click on the pictures or captions for instructions)....

Bubble Wrap Candy Corns

Glitter Pumpkins

Sun Catchers

Pizza Box Painting

Thanks for sharing, Heidi!

Does anyone else have any fun craft ideas that you've done with your kids that you can share???

Bringing Visibility to Disability

The Holland Bloorview Kids Rehab Hospital launched a contest called Film Possible. This contest brought about filmmakers of all ages and abilities to create 73 incredible videos about bringing visibility to disability. The Film Possible judges and voters narrowed the field to six. You can preview the top six videos and vote your favorite here. If you're anything like me, the only problem will be picking just one! Voting closes October 29th, so be sure to stop by soon. The videos are all under 2 minutes -- they are inspiring, funny and definitely worth just a few minutes of your time!

Helping Siblings

At times, I forget it's not just me going through this. I am not the only one who has to deal with my childs special needs. So do his siblings. I have had some pretty real conversations lately with Brody's siblings. It is hard for them. He does things they can't explain. So I came across this article and I thought it was very sound advice. Believe it or not when you have a special needs child whether you like it or not you become a special needs family. You have to adapt and talk about how it effects the whole family. This article really helped me. I hope it helps you as well.

BE OPEN AND HONEST

If you don't know the answer to your children's questions about the disability...say so and try to find the answer.

VALUE EACH CHILD INDIVIDUALLY

Point out each child's strengths and weaknesses; don't compare one with the other.

LIMIT CAREGIVING/BABYSITTING RESPONSIBILITIES

Give recognition when siblings help the special needs child. Don't choose just certain children in the family to help (i.e., the oldest girl.) Everyone can do something. Explain why you are asking for their help (i.e., "if you do this it will give me more time to do other things as well as be with you.")

BE FAIR

Treat the special needs child as normally as possible in terms of attention, discipline and resources.

ACCEPT THE DISABILITY

Others won't accept the disability if you don't. Denying it hinders siblings from being able to deal with it or adjust to it.

GET BOOKS FROM THE LIBRARY

Books are available to explain disabilities. These resources are especially helpful in explaining this subject to young children.

SOME SIBLINGS DISAGREEMENTS ARE NORMAL AND NEED TO HAPPEN

Stopping every disagreement denies the brothers and sisters the opportunity to learn to solve their own problems.

WELCOME OTHER CHILDREN AND FRIENDS INTO THE HOME

Your welcome attitude gives a model of acceptance to the siblings and friends.

PRAISE THE SIBLINGS WHEN THEY HAVE BEEN PATIENT WITH THE SPECIAL NEEDS CHILD OR SACRIFICED, OR BEEN ESPECIALLY HELPFUL.

Blessings Beyond Measure

by Cassie from the blog Beyond Measure.


I was about 17 weeks pregnant when we found out that Caleb had Spina Bifida and Hydrocephalus. I remember sitting in this little office with Glenn and the "genetic counselor" came in with this book and she turned to the section on Spina Bifida and read to us. We were told terrifying things about our baby boy and of course we were offered termination (several times actually). That was never an option for us and I quickly switched doctors. I remember that day so well, like it was yesterday. I felt like my world was falling apart. I remember sitting on our couch, just sobbing and telling God that I couldn't do this, that is wasn't fair and that I didn't want this for my baby. I was mad at God for about a day and then I realized that I needed Him more than ever and that there was no way I could deal with this without Him. People always say that God never gives us more than we can handle, but I don't think that is true. I think we are often faced with situations or circumstances that we can't deal with, at least not without Him walking beside us and sometimes even carrying us through it.

Caleb was born on August 9th, 2005. I had a scheduled c-section so all the necessary medical professionals were ready to meet Caleb's needs. I didn't get to hold him, I only got to see him as they wheeled him by me. There is something so unnatural about that, not getting to touch this life that has been in you for 9 months.

This picture was taken right after Caleb was born, this was the very first time I saw him.

This is the opening in Caleb's back. Some babies with Spina Bifida have a sac that covers the opening but Caleb didn't have that. I was so glad that Glenn was there to get this picture, otherwise I never would have known what Caleb's back actually looked like.

Caleb had his back closure and shunt placement when he was only 6 hours old. Poor Glenn had to deal with that pretty much on his own because I was recovering from my c-section and pushing that morphine drip button every chance I could.

This is following Caleb's surgery. You can see how large his head was due to the hydrocephalus so the shunt placement was an absolute necessity.

Caleb's sweet little head after shunt placement. It was amazing how quickly the shunt worked, his head started getting smaller and smaller. Thank God for the man who invented the shunt!

I just think this picture is so sweet.

Caleb was in the NICU for 13 days. Probably the hardest 2 weeks of my life up to that point. Glenn and I would spend 7+ hours a day by his bed, talking to him and holding him.

Caleb smiling, he smiled all the time. I know everyone says it is just gas but I like to think he was just a happy guy!

I hated everything about him being in the NICU. I hated feeling like I had to ask permission to hold my own baby. It was a joyous day when we got to bring him home.

Finally home!

So that pretty much sums up the start of Caleb's journey. It is now a 5 year long journey and one that I feel so blessed to be a part of. We have certainly had many ups and downs. Spina Bifida is very complex and it affects so many aspects of Caleb's life, not just his mobility.

Caleb is now 5 years old and he started Kindergarten this fall. He is doing things we were told he would never do. He walks with AFO's and a walker. He also uses a wheelchair because his legs do get tired. He loves watching NASCAR and Monster Truck videos. He loves to color and write. He plays baseball through the Miracle League and he absolutely loves that. He is a wonderful big brother to Benjamin.




You can't help but smile looking at this boy. I have days of sadness, times when I feel sad for him. But then I remind myself that Caleb isn't sad. He's not unhappy at all. If he isn't sad, then why in the world should I be?



Caleb is absolutely amazing and an inspiration to me. I am in awe of all the things that he has accomplished. He absolutely blows me away and brings me so much joy. I thank God on a daily basis for blessing my life and trusting me and Glenn with Caleb. God must have seen something in me that I didn't see in myself because He knew that I could handle this (with His help of course). God gives me a peace that I wouldn't have otherwise. Our lives would be so different if Caleb didn't have Spina Bifida, I can't even imagine things any other way. I think about all the wonderful people I have met that I wouldn't know if it weren't for Caleb. My life has been touched by so many other moms that share the bond of having a child with SB. I don't walk this road alone and that makes all the difference.

Can't Live Without

We did a "can't live without" post last year, and it was such a hit that we had to do it again. Here are all the items that the kidz krew just couldn't do without!....

From April:

Caleb and I love his stroller from adaptive mall. His wheelchair is so heavy and difficult to get in and out of the car, but our nifty stroller has made it a lot easier for us to be out and about!

We also love his new swing from the make a wish foundation! Caleb doesn't have a lot of head or trunk control, but we're able to tilt it back so it can give him all of the support he needs. I'm not sure where they got it, but if you're interested, let me know and I'll find out!

Caleb was approved for a sleep safe bed about 9 months ago. It has been a big blessing to us. The top and bottom of the the bed will raise and lower for better positioning. I love being able to get Caleb elevated to help him be more comfortable with his continuous feedings and his ventilator at night. The see- through guard rails also make it easy to keep an eye on him even when they're up!

And last but not least, my favorite item is my cozy rocking chair. Caleb and I have had some great "heart to heart" conversations when we rock together.

From Brandi:

It took me a while to come up with three "must haves" for special needs children/moms. I wanted it to be perfect. I wanted it to be inspiring.

I settled on real!

For Matthew one of our favorite "must haves" is our Water Way Babies.

http://www.waterwaybabies.com/

This thing is AMAZING. It has allowed our sweet guy that has NO head control to feel free in the water. He loves it. We actually heard of this product through our therapists. They gave us the website, and after watching the video we were SOLD. Matthew has never been so free and mobile then when using this product. It was such an amazing experience to watch our little guy "swim" with freedom!

For Mommy, my must have is "Chicken Soup for the Soul: Children with Special Needs."

http://www.chickensoup.com/default.asp

This amazing book will help get past those bad days and start each new morning with a refreshed sense of spirit. I have read, reread, and reread this again. It always comforts me when my world seems to fall apart. It is definitely the equivalent of chicken soup on a cold rainy day.

For Autumn our favorite thing is the Wingbo. She loves this swing. It is intended for children to be able to swing themselves while in a prone position. It really helped Autumn gain control of her trunk muscles.

http://wingbousa.com/

From Erin:



The Angel with the Golden Glow
A Family's journey through loss and healing
by Elissa Al-Chokhachy Illustrated by Ulrike Graf


This book was suggested to me shortly after Charlotte passed away and I ordered it online without really knowing anything about it. As you can probably guess, it is most appropriate for those who have lost a special child, but is also good for siblings or families dealing with the inevitability of loss. Without giving too much away it tells the story of a special spirit chosen to be born into a family who discover soon after that he will not be with them very long. He is confused at the sadness of his family as he knows he was born for this purpose. The hardest thing for him was leaving his best friend behind in heaven when he was born. This is my favorite part--of him watching from above as his family and friends release balloons in remembrance of him.



It has a wonderful, comforting ending and teaches that everyone has a purpose and families are eternal in a nondenominational way. (it is not written from any particular religious point of view but of course is about "angels" and God and our purpose in life.) We have used it in family nights and with our children but I still can't get through it without crying.
Because most of us with special needs children know lots of other families with special needs children, we almost always are faced with the issue of loss and heaven either within our families or with our friends. I'm grateful my kids will be familiar with this book growing up to help them remember their sister(s) and recognize their special connection to them.



From Janet:

One of the most regularly used piece of equipment is the Manatee Bath Seat here It is light weight and can be easily lifted in and out of the tub.



Another can't live without piece of equipment is Hailey's Kid Kart Xpress this site doesn't have images but my son and daughter in law get alot of Hailey's equipment here to see images you can also go here. This is easily used for a high chair as well as a stroller.





From Jenny:

1) Avent Sippy Cup: Sammy can't drink well from any other cup. The soft spout, the handles...it's all good for her and the one thing she can independently drink from.

2) Electric Toothbrush: It doesn't matter what brand you have, but I get one with a smaller head to fit in her small mouth. Brushing her teeth has always been a chore. She bites the toothbrush, so we don't get much brushing done. I want to keep her whites pearly if I can. So, her OT suggested an electric toothbrush. She loves it. She'll open her mouth for me while I work in there. The vibration really makes a difference.

3) Chewy Tube/Chewy Necklace: Yes, sometimes these can be disgusting because they are collectors of saliva. BUT, sometimes she just needs to chew, and I'd rather have her chew this than her fingers which are perma-RED from her biting them. It also keeps her from chewing her clothes, which is a bonus. I have found good prices at this site.

From Kristina:


1.) Child Rite seat. www.childrite.com. We use this everyday at home, bring it out with us for library story time, and Emma is also using it at circle time at school. It puts her on the same level as the kids when sitting on the floor and she doesn't have to have Mom or Dad sitting right next to her so she won't tip over (she can't sit independently yet).



2.) The iPad. www.apple.com Emma needs someone to help her play with her toys, but sometimes she has to play independently. We have loaded the iPad with lots of stories and games and Emma can play with them on her own. We are also using the augmentative communication program Proloquo2go on the iPad to give Emma more access to expressive language.



3.) Kids Up FAST adaptive stroller. http://www.kidsupco.com/FAST.html This stroller is a breeze to push, gives Emma enough support to sit comfortably for extended periods of time, and is easy to adjust.


From Melissa:

One thing that has been a necessity in our family is the jogging stroller. We live next to a trail and couldn't go as a family because Brody always got to tired. But with our jogger we can run and he can come. It is great. We have been able to do active things together that we never thought were possible. He has to be able to rest when he feels exerted, so this is definitely a must have.

Another must have is the doctor binder. I can't tell you how many times the doctor has asked for a record and I happened to have it on hand. It has sped things up so much, especially when we see genetics and they order tests. I have multiple tabs, questions, notes, cardiology records, primary care records, and genetics. I have even used it for his school purposes.

From Tara:

Without question, this space blanket that was less than $2 on ebay was one of the very best investments I've ever made. Chloe LOVES that it's reflective and noisy. It is sensory input heaven, folds up tiny and is easy to take around.... We love it!


I don't know how much money I've spent trying to find toys that will help entertain Chloe, but I've found that stuffing regular things around the house into decorative wicker baskets works just as good as almost anything else. It looks cute when I don't get a chance to actually put it away in a closet where it belongs, which makes it easily accessible. In the basket you'll find things ranging from hair bows, make-up, plastic spoons, crayons, curly ribbon, tissue paper, water bottles, TV remote, keys, etc. It's so simple, but this is truly Chloe's favorite thing! She gets so happy when I ask if she wants me to get her basket. What can I say -- I live to make her happy, so she gets the basket quite a bit!!!...


By now, you may have picked up on the fact that Chloe LOVES (and needs!) sensory input. And one toy that she simply can't live without is a clacker. We have many clackers, lots of colors and sizes. We have a fun one for Halloween that is eyeballs! lol! But our favorite one is Ollie the Octopus. He's just plain cute!....



We like to be outside as much as possible. We love vitamin D! But poor Chloe has a hard time keeping most sunglasses on. These sunglasses with Velcro straps are heaven sent! I used to get them at Target, but haven't seen them there for awhile, so I recently got a pair for a decent price at Play Outdoors online.

Last but not least, we couldn't live without our Ninja food processor. I get to take my Weight Watchers recipes that are low-fat and blend them up with added oils and butter to make them high-fat and high-calorie for Chloe. We have to make every bite count for miss skinny pants! I love this thing because it is versatile, easy to clean, and just all around cool. It is very user friendly and makes it easy to get food to the exact consistency that is easiest for Chloe. It's a definite must-have item for us!




So, readers, what are your "can't live without" items???

Please share, we need Christmas gift ideas! ;)

I See a Miracle

“I thought I would have to teach my daughter
about the world.
It turns out I have to teach the world about my daughter.
They see a girl who can not talk.
I see a miracle who doesn't need words.”
~Anonymous

Mother and Child by Anne Marie Oborn