Keep teethers, chew toys near child and off floor

We use a small carabiner and a key-chain or other attachment to keep Grace's Chewable bracelets or as we call them "rings," close and within easy reach for her.

Fun mister-adapted water play

Grace loves the "mist" setting on our garden hose. I found this mister called a "Cobra mistand" at Home Depot online for about $11. We can hook it up to out irrigation water and run it while Grace is playing outside on our deck. She loves it.

Adapted bubble blower

Awesome bubble blower machine for Grace. I found it at Shopko. Grace can squeeze the handle and make bubbles come out of the top. (I usually need to "prime" it after non-use for a day or two.

The only adaption I did was to use plastic zip-ties and tie this bubble blower to our metal picnic table so Grace can squeeze the handle and not pull the whole thing down.

Wheelchair Accessible DIY water table

I turned an old changing table into a wheelchair accessible sensory table. I removed the bottom shelves and bars. I added a bar to lock down the water box as Grace likes to pick the whole box up. There's a simple loop of wire on one end & a hinge on ther other end so I can lift up the bar to clean out the water box as needed.

D is for Diapers

My daughter with special needs is right between Pampers size 7 diapers and special needs youth diapers XS. There is a drastic difference between the two. And don't get me started on quality! Pampers (no affiliation or kick-backs here) have been perfected to hold the stuff AND look nice, feel nice and relatively smell fine until the deed is done. Youth XS diapers are cut funny, don't have the extra leg elastic, smell "medical," smell bad after use and just don't hold enough.
I really like Pampers diapers for my daughter. Of course the cost is getting more extravagant as the size goes up and the quantity per box goes down. But, my nose is quite thankful and my laundry bill still remains sane.
 Actually, the price per diaper probably averages out with the youth XS versions because I end up using more of the Youth XS in a day then I do with the Pampers size 7. Also, I have to buy a product called a diaper doubler which is like a super large maxi pad that you can put into Youth diapers to help keep the stuff in them.
I've begged Pampers to create a size 8. If Pampers could just bridge the gap between baby and adult, it would make my life so nice for another couple of years.
My daughter is growing and she will one day outgrow the Pampers size 8, also. I guess I need to grow out of the baby stage someday and grasp the idea of smelly, ill-fitting Youth diapers. It doesn't seem fair- not too my child or my nose.

C is for Caregiver

I am a Caregiver to children with special needs.
I am a nurse
I am a feeding therapist
I am a play friend
I am a physical therapist
I am a doctor
I am a speech therapist
I am a laundress
I am a nutritionist
I am an occupational therapist
I am a neurologist
I am an advocate
I am a massage therapist
I am an educator
I am a facilitator
I am a cook
I am a social director
I am a chauffeur
I am a children's yoga instructor
I am a gastroenterologist
I am an equipment operator
I am a pharmacist
I am a supplies purchaser
I am a maintenance technician
I am an appointment organizer
I am a hair dresser
I am a researcher
I am a paper manager
I am a life coach
I am a negotiator
I am a dental hygienist

Oh yeah. I am their mother,too.
I am The Expert Parent for my children with special needs

A is for Attention

My child with special needs is sitting next to me begging for me to look at her and give her the time of day. A bit ironic as I write this post about Attention.  Here is my child with special needs and no verbal words of her own begging me to give her my full attention. She has wheeled her wheelchair as close to me as she can. She keeps reaching up to my face, pulling it to look at her. I kiss her and try to send her to her play table next to me.
She doesn't fall for it.
She knows I'm trying to do something else. All kids know when you don't want to be with them in the moment. That's when they are so in your business.
But, it's pretty early. She has woken up on "my morning time," so I don't feel obliged to give her my 100% at this moment. I think 50-60% is fair.
She does not like this idea. 
Sometimes I battle this want of hers and try my darnedest to hide my smartphone behind her Ipad as she plays Peak-a-boo Barn for the 100th time. But she knows when I am not paying full attention. She starts to squirm, sometimes fuss, sometimes hit. That's her only way of expressing her disappointment with me and again I feel guilty. Then I remember the big picture and know that catching up on Facebook is so not important and she wins my attention.
And funny, but life gets easier when I don't fight sharing my attention.

A to Z Blogging Challenge

A to Z Blogging Challenge- April 2015

I'm starting this A to Z Blogging Challenge for April. I love to start challenges but rarely follow through. So, I am testing myself. I am also trying to increase my blogging habit so I thought this might be a fun thing to do.(And technically, I'm not actually linked up to this but I'll still give them credit because this is where I got the idea.)

 

Fidget for Family dinner Time

Grace doesn't eat too much with us or on some nights she is not interested in eating at all. But, we love to include her at the family dinner table. She gets very busy and into everything, especially when she is not interested in eating. So, I created a fidget toy for her. I took an exercise strap that you put into a door and stuck it between the leaves in our table and then connected a bunch of her favorite fidget toys and other sensory items to it. This gives her plenty to do with her hands and the chance to participate in the family dinner.

Kids Walk

We really like the Kids Walk for Grace. I usually post videos of Grace, herself, using the equipment but I thought the company's video was very descriptive. I do not get anything for posting this. I just wanted to share a piece of equipment we like.

run through the sprinkler in your wheelchair

Here I put a long green sprinkler (the one with holes all along it) along the rail of the deck. G loves moving herself in her wheelchair among the streams of water. She really wanted a place to stick her hands in water, so I placed the flower box holder with a container to hold water at the end. A stream of water fills it as she plays.

Independent play- water box with straw & deck toys

G loves playing in this water box, I made from a plastic storage box. Two holes in the top for her to stick her hands into and play water. I had to add the straw because she wanted so badly to blow bubbles into the water. She has been happy with the straw to blow bubbles into the water.

G also loves to make music outside and so I fastened a couple of musical toys to the deck with straps.

The white circle piece plays music with a simple spin.

On this one, the purple circle is turned by G sticking her finger in the open window part & G gets music. You can also push the buttons but G doesn't do that.

Independent Playskills- toys we have

 Most of these toys that we have are push button- cause and effect toys. G is not so good with these ones, though. You need a bit more precision to make them work.

I like this one with the balls to move left and right. That would be a different skill for G to learn for independent play.

Other ideas for independent play:
And G also likes to blow on the recorder. Maybe some other toys that use blowing to work.

Also- I was thinking: Pulling toys to her. Tying short strings on toys that G to pull to her to reach.

Current toys- independent toys

 The knobs on this play stove, G can turn on and gets a "water boiling sound"

G pulls the orange handle on the bottom

 G hits buttons- likes the 3 at the bottom which say Dad, "I love Grace," & Mommy (left to right, middle one is programable). She hits the toy open handed with palm.

 Another musical toy- Velcroed to table. G usually goes for the orange/clear spinner on the left.

ipad- needs help to get to an app

no music but G likes the spinning pieces.

Basket of toys: lots of different textures, shapes and sizes. G usually pulls different things out, feels them, keeps them or throws them.

Here is G's independent play area.Her toys are usually all around her and she will roll around to get to them.

Another type of Need by other Special People in my life

Post mastectomy/double mastectomy gift ideas
(May want to give it to your person in need before they go for surgery)
Two separate people, dear to me, needed extra support in the past few months because they each underwent a double mastectomy. Then another friend knew a coworker having surgery and asked what I did for my people. Here are pictures of things I made that I know both women have been grateful for.

Post-surgery, you are stuck with these drain tube thingies hanging from the surgical sites. They are there for 1-2 weeks give or take. So, I saw some expensive options on the internet but made my own versions, rather cheaply or for free.

 

These are pouches, I made from the sleeves of some old kid clothes I had. The BC survivor can put the drain tubes inside a pouch and pin to an undershirt or the back of their main shirt. I also think you could use size 3T-4T kid socks- the less stretchy the better, I assume. I like the convenience of using large diaper pins versus small safety pins, but your choice.

A lanyard from an old convention I attended a few years ago. I added 2 pieces of the Velcro you wrap around cables to the lanyard. This is used to tie the drain pumps together when you are in the shower. (The 2nd picture is from Amazon.com)

This is a small kid's waist apron with a pocket. Cut a slit into the bottom to let the water drain out. I added extra ribbon to the original ties so that it could go around an adult. This was used by one friend in the shower who found it's convenience of dropping her drain tubes in it easy for the shower. She put her drain tubes in the pocket for her shower then afterwards just hung it on the shower rod to dry.

This last item is a scarf which I bought and sewed pockets into. I picked a pretty scarf but the BC Survivor wore it under her clothes & put her drain tubes in the pockets. But who says you have to wear an ugly scarf? Beat the ugly cancer with beauty and you will win. The pocket is made with some white felt I had.

Lastly, in case you don't feel comfortable giving the above supplies to your BC survivor person, you could always give a funny card about a "fast recovery" or "speedy recovery" and a funny DVD.

 "Laughter is the Best Medicine" ~unknown

Gluten Free Muffins Cooking Tip

When I cool my gluten free muffins I turn them upside down(in picture on the right side)on the cooling racks so they don't fall down into themselves (in picture on the left side).

Handicapped Parking

We had a lot of trouble with the handicapped parking at my child's school this past fall. People were constantly illegally parking in the spaces. The solution that seems to be working is the addition of an orange traffic cone. Simple for the school to do and a much calmer start to my daughter's school day. I can easily jump out of my car and move the cone and pull the van in. The person with disabilities, driving themselves, can easily drive right over the cone if necessary, to park in the spot. It's been a win-win, so far.

I have no problem waiting my turn to park if the handicap parking spaces were all being used by legally marked cars with handicap tags or plates but each day was so frustrating. People had excuses galore for using the handicap parking spots. "I'm just running into the school 'for just a minute,'" "I was hoping to get back to my car before the space was needed," etc. You, the illegal car parker, do not know my child's schedule. "Just a minute," is 60 seconds too long. You do not understand what it takes to pull a wheelchair and walker out of my van, having the room to do so and get a growing child into a wheelchair. You don't know what it is like to push all this over the ice and snow. Handicapped parking places have been made so that they have extra room around the car. They are usually close to the building because it often takes the person actually using them, much more energy to get to the door than you or I. The handicap parking spaces are placed by easy access ramps for the wheeled equipment.The handicapped parking places are placed to assist people with health issues. Be grateful you don't need this space and please respect those who do by parking in the hundred other parking spaces available nearby. Thank you.

UPDATE: Nowadays, the orange cones are placed at the end of the yellow lines, so I can just drive around them. 

Won't eat it, Be it!

If she won't eat the fruit, at least she can experience it.
Here G sits in a papasan chair. I used to hate these chairs for myself but it has been the perfect chair to get G up off the floor without having her strapped into a positioning chair. And the fruit- it's her own sensory bucket. She loved it.

Showering at the airport?

Obviously, Grace did not tolerate her medicine and tube-fed formula on her trip home. Just before take-off as we taxied on the runway, Grace threw up all over her clothes. For Grace, throw up is like a baby's spit up: Formula in, formula out. So, it didn't smell much. She promptly fell asleep and so I didn't move her for the duration of the flight. Our connecting city was Phoenix and I had less than an hour to de-plane and board our next flight. I asked for a family bathroom and was directed to the one near Gate A24 or there about. I realized Grace's change of clothes were in a different bag with one of my other kids. So, I quickly went to the bathroom and looked around. This family bathroom was one room with the toilet, a sink, a bench and a shower (puzzled face here). Who needs a shower at an airport? I flagged down my son to bring me Grace's clothes and he then helped me. As it turns out, Grace also had one of the worst blowouts from her other end that she has ever had!!!! Yuck!!! So, thank goodness this bathroom has a shower! With a million papertowels and the shower hose, I was able to quickly clean her up and get her redressed for the last flight home. I thought someone flying through Phoenix might find the shower as helpful as I did that day.

Sticking around

As G is being upright more and more, I have had to come up with ideas for her toys. Often while playing, she'll hit things too hard or just enjoy knocking them to the ground. I stuck velcro on an old art table of my kids and put the other side of the velcro on the toy. Now G can play with the toy without the toy falling off the table. Simple. Yahoo! You can also notice the electric keyboard in the background. We had to connect the piano to the shelving unit but it is the perfect height for G when she is in her Kids Walk walker and it is very motivating for her.