Taking a Break From Surgery Posts to Answer a Question

This post published about 4 times before I was ready. I'm sorry if its shown up in your reader multiple times

Hi, my name is Ashley and I have food and sensory issues...

Hi, Ashley


CP is a mixed bag of gifts and troubles. Sensory Integration Disorder is one of the... not so nice parts about it. I have sensory needs that directly impact my life. One of the biggest issues I have is around food- I have an almost phobic reaction when presented with and expected to eat "new" foods. (For those of you who are coming to Orlando, no worries. People can eat whatever they want around me)

The other piece to my food puzzle is anxiety. CP affected my swallowing fairly significantly when I was a baby, so people were *very* anxious while feeding me. I picked up on that, and became anxious about food in response.

I was giving some ideas on another blog as to how someone's kiddo with sensory issues might be able to eat a wider variety of healthy foods, and promised to post about my own strategies. Here they are, in no particular order.

• Relax, relax, relax: Make mealtimes and food as easy as possible. Do not bribe or punish for refusing or trying new foods. Praise, even just for having something new on the plate, however, is good
• Supplement: Until the kiddo is able to eat a wide variety of foods, use pediasure and or vitamins to make sure nutritional needs are being met. (This helps a lot with relaxing) You may need to have bloodtests done, especially for B12. I was severely lacking in B12, and I choose to supplement through monthly injections
• Offer, offer offer: While giving your kiddo what they are able to eat, don't be afraid to offer what you might be eating. Do this in a no-pressure way. Your kiddo might surprise you and say yes one of these days
• Positive Peer Pressure: Have your child watch others eat- People they look up to or respect. Lunch dates with older siblings or heroes is a great idea. Give your child things they are comfortable eating, but offer what the other person is eating too. This can also help with a really embarrassing issue that can come up: Not knowing *how* to eat a certain food because you've never eaten it before. Example- How do you eat pizza? How do you pick up a chicken wing? Sometimes "monkey see monkey do" is less scary than asking

Finally, this is my method for trying a new food. It might take several "offerings" but it works for me.

• Get used to the smell of the food. Maybe even sniff it. 
• Poke it with one finger (you would be surprised how hard this can be!)
• "Play" in it with the proper utensil- How does it feel on the spoon or fork or chopstick?
• Put it in your mouth- Have a napkin nearby. How does it feel on your tongue? If you need to spit it out, that's okay.

If all of these steps yield positive results I can usually add the food to my "I can eat it" list.

Happy Eating!

Blogging about Blogging

First of all- I'm creeping up there on 100 posts! I'll have to think about something fun to do for post 100. (This is post 98)

Second of all, I set some gears in motion yesterday for surgery on my foot, mentioned here, here, here, and here in chronological order. Looks like it will be soon, but not a lot has panned out on the job front right now, and my surgeon is great, so I have to believe that this is the right time.

*Given* that surgery will be soon (this is my 7th or 8th, so there's not so much a fear of the unknown as the fear of the "Oh, not this again...") and given that my last serious surgery was in 2000 (last surgery of any sort was in 2006) I have a tool at my disposal this time that I didn't before: Blogging!!

Is anyone interested in me blogging through this? Is anyone *opposed* to me blogging through this? No gory pictures, I promise. In fact, no pictures at all of me in hospital, I don't want them, and neither do you.

I never intended to become a "medblogger" per se, but writing is amazing therapy... It's not worth losing my readers, though!

On Children's Programming

Disclaimer: I am not a Mom. Unless we count Mackers.

But honestly, the downturn in children's TV since *I* was small kind of freaks me out. When I was a kid, you could pretty well turn on Family Channel with no worries about what you might see. You might see

Katie and Orbie

Maya the Bee

or Madeline, or an assortment of classic Disney.

On Friday nights there was the incredible lineup of TGIF, which when I was a kid, consisted of Boy Meets World, Family Matters, Full House, Step By Step, and Sabrina the Teenage Witch.

I remember these shows tackling some tough issues: Fitting in, dating, step-families, even child abuse and eating disorders (Thanks, Full House!)

I do not remember any of these characters saying *anything* of the likes of the snarky, irritable, constantly hormonal "tweens" such as Hannah Bratana (I think Corey used that term first?) or Zach and Cody or the blended famly on Life With Derek....

I couldn't sleep last night, so Lady and I were flicking through channels. Family's broadcast day currently opens with my classic favourite, Katie and Orbie. Before it, there was one of the "tween" shows listed above. As we listened to the dialogue, I turned to Lady and said,

"This is why all the kids sound like this!!"

Now, I know that's not the *only* reason, but it made me think.

Okay...so...Corey said....

That I don't blog enough. So blog I will...

Hair – growing

Your Mother – young

Your Father – absent

Fav Food – french fries, and it shows...Oh well

Dream Last Night – Don't remember

Fav Drink – Organic Irish breakfast tea

What room are you in? – friend's living room

Hobby – blog

Fear – abandonment

Where were you last night? – home

Something that you aren’t – graceful

Muffins – Oatmeal

Wish List Item – job

Where you grew up – St. John's NL

What you are wearing –sweats

Your Pet – one cat, the infamous Mackers

Friends – as family

Something you’re not wearing – shoes

Fav Store – Walmart. Seriously. For the student on a dime?

Fav Color – pink

Last time you laughed – today

Your Best Friend – Tayley

Best Place you go over and over – Blockbuster Video

Person who you email regularly – blogger folks

Fav Place to Eat – Ches' Fish and Chips- Newfoundland exclusive :)

Now I tag…

Tuba

Tayley

Linda

And anyone else who wants to play


As for my future blogging- Tell me.

What do inquiring minds want to know?

Further foot info, especially for Linda B. but also for anyone else who might be interested.

I fixed my blog colours so that links will show up in green now. There are a few links on the last post to explain some of the medical-ese, but visual aids can be fun too!

Basically, the triple fusion I talked about would salvage my left foot. The doctor would go in and place screws and plates in the three major joints. Sounds drastic, and it is, but I had one done 10 years ago on the right side and its holding up great.

Why does my foot need to be salvaged? Well, the CP has twisted the bones and muscles in my foot (and elsewhere) all out of shape, so my foot, in repose, looks a little something like this :)

It looks painful, and it kind of is, especially when walking and especially since the break

A Soft Landing

So my room is still clean and the trauma is settling. Communication lines, blasted open by my abrupt departure, have stayed open. It's not perfect- but we're trying.

3 weeks til I get the keys- HUGE!!!

Mom is panicking about every 3 days, my stepdad calmly asks her "Aren't you proud of Ashley? This is a big step." I truly believe that we'll get there.

Any tips from you lovely folks about independent living? What do you wish you'd known when you moved out?

Dia- I really enjoyed the book that Tortuga did his report on when I was younger. When I was Corazon's age, I read Anne of Green Gables and Emily of New Moon. She might like them, the language is really rich.

Think that's all I have to say right now. Still reading all of you, every day.

Mom's clean when they're stressed? I seriously did not know this

So....

When I came home from my week at my friend's, I found my room spotless, bed made with love. My Mom did it.

I can only think of a few times since age 16 when my Mom has made my bed.... Usually after my surgeries when I'm too sick to think much about it.

In a way, I hate the way I did things last week- Just taking off like that. But I couldn't think of any other way, and it's all working out.... I hate that I hurt her, but hopefully with some space some healing can take place.

Security deposit paid on the apartment. They can't take it away now :)

Am still blocked on the Sensory Integration post ideas. Does anyone have any questions I could use as jump off points?

Also... I know this is a sensitive issue but I thought I might ask....

You all have such great advice...

I recently recieved confirmation that sexual abuse I remembered in my childhood did happen. I don't want to press charges- I don't even know what the statute of limitations would be, and I don't *want* to know...

But I've been on overdrive. Rapid heartbeat for days, sensory integration things so bad I can't brush my teeth (I *wish* I could....)

Mom desperately wants me to be able to forget about it... "Put it in a box" she said....

I don't think I can without....someting.

My Take On Sensory Integration Disorder?

Hi all of you out in bloggyland!

I've been trying to think of something interesting to post lately, and then I realised that most of you with special-needs kids deal with sensory integration issues. Does anyone want to hear my take on my sensory stuff? Would a description help? Any questions you'd love to ask your kids but that they have trouble articulating that I might be able to shed some light on?

Books about Radishes for Radishes?

Do they exist?

The reason I ask (and I'm not talking straight biography here, I'm talking fictional books) is that there were very few books about kids with CP when I was small. In fact, now that I think about it, there are still not that many.

But one I was very happy to find was Mine for Keeps by Jean Little. It was, however, written in 1962, so not the most relevant for a little girl living with CP 30 years later- but there were some pieces.

Of course, as I got older I've really begun to see and critique the flaws in Little's book. She didn't have CP, she didn't live CP, she only taught some children who did- So Sal's life reads a little like "I did this. And then I did this. And then I did this." Like an observer.

The author does live with vision loss, knows it intimately, and this shines through in another of her books- From Anna. Published in 1973, Anna is a young girl living with vision loss, and her story although told in the same, simple appropriate language for the age group, rings much more...true, I suppose. Anna just doesn't go to school with her glasses- She *IS* at school with her glasses.

This got me thinking about Radishes. Are there similar books? Would Radishes who are in recovery find comfort in a book about a boy or girl with an Awesome Mom and an AT and weighted vests?

Hoping this post is making a little sense- I'm going to hit publish anyway

On "Normals."

I come to you today as a young woman with Special Needs- I used to hate that term, but let's face it- I got 'em. I'm 22 and need someone to put my boots on, can't drive (have been assessed, not gonna happen with the current cars on the road) still need a rubber sheet on my mattress just in case.

I come to you- my Awesome Moms- with a question. Understand that I do not see any of you as Normal, and that I mean that as the highest compliment

WHY is there a switch in the heads of 'normal' people- who just do NOT get it- that makes them think they know better than a 'non-normal' someone who is neuro-atypical or physically disabled or has their crazy a bit less hidden?

Can we take it out?

I've got a screwdriver...

Welcome!

I hope I don't turn off any of the wonderful Awesome Moms I've found through my research into RAD with the name of this blog- Being a Lesbian is only a small part of who I am.

The "Rolladyke" nickname is used with utmost affection by my friends because I am a Wheelchair user, as well as a veritable roll-a-dex of information like cellphone numbers, other people's schedules, random facts about politics, medgeekery, first names and social information of University support staff and a plethora of connections in the University English Department and Government agencies. Guess Mom didn't realise what she was starting when she made me case manager of my ISSP (IEP team for my American friends) when I was a Sophmore in High School.

I am currently pursuing an English/Psychology degree with an eye towards Narrative Therapy or Attachment Therapy as a life path, hence my interest in RAD. I also volunteer as Youth Advocacy Facilitator with a Canada-Wide Youth exchange which is completely cross-disability. Here, I have worked with youth with mobility impairments (I have CP myself) Cystic Fibrosis, Ehler Dalos Syndrome, Traumatic Brain Injury, ADHD, ODD and FASD.

In my daily life, I also live with anxiety and depression, as well as PTSD from some of the CP treatments and emotional/sexual abuse I endured as a child. I am recovering well with the help of talk therapy and energy work, as well as a supportive social network which I hope includes all of you as well!

Please, ask me questions- I follow your lives avidly, and it's time you were at least able to follow mine if you liked.

Light, Love and Energy,

Ashley