Friday, June 19, 2015

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.

Saturday, April 4, 2015

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.

Friday, April 3, 2015

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

Wednesday, April 1, 2015

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.