A Child From Holland, Part 2: Getting Something Out Of It.

I had no intention of making a series of A Child from Holland posts, but Foster Abba asked me an important question- "Then what happened?"- and I realized I had more to say. So here we go. As in other posts, all names that are not mine are pseudonyms.


This is something that's been brewing in the back of my mind for a few days... friendship and love... I went to a small, denominational school until I was 13. There were social pros and cons to that- I had most of the same people in my classes from Kindergarten on up, so they knew me and my walker and my Holland wooden shoes and crazy walking. They knew other things too, though, like how I had bathroom accidents and sometimes got extra "attention" in the classroom from a paraprofessional, which, as we all entered the general insanity of adolescence, just gave the kind of kids who collect ammunition new and different weapons to use against me. I'm not saying I was their only target, I was different, a sickly member of the herd worth turning on, but intellectually I was their peer, and I was supposed to "just" have CP.- Unlike the English Language Learner who was another tortured member of the class I *knew* what they were saying and doing to me, and unlike the student who had the mysterious diagnosis of "Behavioural" I didn't melt down and run from the classroom to escape. (There were days I wished I could.)

All of that is just to say that changing schools at 13 was good for me. I met new people and reinvented myself a little...including buying 5 identical pairs of pants so no one would ever know if I had to change in the middle of the day. And it worked for awhile..until one day, at 14, I was taken aside by my paraprofessional.

"Who walked you to class yesterday, Ashley?"

"Um...Annie." Annie had become a very close friend the year before, and our madcap, giggling dashes to class were commonplace, her pushing my wheelchair through the throng while I balanced a precarious tower of books and binders on my lap- hers and mine, usually 6 or 7 books in total and the corresponding binders. It had seemed a good system- my Individual Student Support Plan (my province's name for an IEP) termed it "Self Directed Peer Support." My paraprofessional was still available, but usually we left her in our wake, planning lunch or the upcoming weekend as I peered for obstacles around the teetering pile of books.

"Well, that won't be happening anymore."

"Why?" I looked around- Annie hadn't arrived in the classroom yet, and, already prone to anxiety, I began to think the worst.

"Her mother called the school yesterday and demanded to know why it was Annie's responsibility to push your chair. I have to do it now, I'm sorry. I'll see you at 9." She slipped out, a nice enough woman who I liked okay, just as Annie found her way in and took the desk next to mine.

"You could've told me!" I burst out.

"I didn't know." Annie promised, looking right at me. "Mom took me to the doctor yesterday and he asked about my screwy thumb." Annie's thumb had been broken years before and had healed strangely. It didn't hurt her, but the doctors were trying some strange things with bracing that made no sense to either of us. "He said it still isn't straightening, and asked me if there was anything strenuous I was doing. I said no, but Mom started freaking out about my pushing your chair. The doctor said it probably made no difference, but she told me today she'd called the school, I'm so sorry."

--

Little did I know this was essentially the end of Annie and me. Her mother had decided, plain and simple, that I was a burden. That her daughter wasn't "getting anything" out of our friendship and was being taken advantage of. As a result, Annie was no longer allowed to visit my home on the weekends or to talk on the phone. She kept assuring me- and I believe she meant it- that I had done nothing wrong, but no teenage girls' friendship can flourish without girls nights and telephone conversations...and our days of giggling in the madness of the halls were over- Once again I was picked up by my adult parapro 5 minutes before each class ended and deposited in the next one. Annie tried to accompany us, but it wasn't allowed. I was "the different one" again...

My first love's mother also had this problem. We were fine for awhile, but then it didn't matter what either of us said, there was "inequality" and "deserving better" and we drifted apart.

Now, I have Immodest-Lady...and her mother has been the most blatant of all...but gifted with maturity and romantic love, she's fought back, refusing to believe it, reassuring her mother (and me) of all the wonderful things I do for her and for our household, even though they might not be as visible as her helping me with some caregiving tasks...

But all of this leaves me wondering- Do the mothers of neurotypical "Italian" children view all friendships with such scrutiny? Do they teach their children that friendship isn't a give and take, but is, instead, an opportunity for advancement? I hope not.

I wish I could take the three mothers in the above stories- Annie's Mom, First Love's Mom, and Immodest Mom, and ask them, if they were mothers of Holland children instead, wouldn't they want cross-border friendships for their children? Wouldn't they spend nights begging The Powers that they believe in for just one person to *see* their child?

On Being From Holland

This post is meant to be sort of an expanded version of the comment I left over here at the Final Maze. I am a kid from Holland. I know that my Mom was very young when I was born, and I know that she wanted me very much, but I also know she expected me to be Italian, and there's been a grieving process around that.

See, babies, even brain damaged babies, are little bundles of potential, and the pediatrician who diagnosed me was floored by the fact that at 14 months old I was speaking and interacting, so when Mom asked for pamphlets or books on kids with CP she was told she couldn't have any- "because all of those are going to be about kids way worse than she will be." So Mom was kind of led to believe that though I was born in Holland I'd soon have a passport to Italy. And therapy, at least at first, looked like it was going to be that passport. Early physical and occupational therapy happens 3 times a week, and I had therapists who were well used to sobbing babies and didn't let that stop them from pushing me to do what they wanted me to do.

At three years old I had my first surgery, a muscle release to unbend my knobby knees and loosen my heelcords to stop my toe walking, and voila! All of a sudden my ticket to Italy seemed to be within reach: All I had to do was learn to walk! (One of the joys of being from Holland is being old enough to remember your mother's jubilant sobbing as you take your first steps)
But...maybe it was the wooden shoes... I still swayed like a ship in a gale and still fell. Often. It seemed to be enough for the people around me, though, and if I had never gone to school I might have lived my whole life in happy, funny-walking Holland.

I did turn five, though, and I did go to school, and I realised for the first time that most other people were from Italy. They didn’t know the words that were so commonplace in my world like “physio” and “walker” and “gait training” and what was more, they had *done* things that we did not do in Holland like cross the street alone and climb snowbanks and make it to the bathroom on time *all* the time. Italy started to look like a *very* cool place. Still, I comforted myself that there were cool things about Holland too, horseback riding lessons and games of Critter in the Candy among them, and...I hadn’t seen any *adults* in Holland, so surely we all must move to Italy at some magical age. I remember thinking that that age was eleven the summer I couldn’t get enough of the Full House tie in books. Stephanie Tanner could take a shower and mow the lawn. I didn’t have a lawn to mow, and didn’t care to, but a shower...

I turned eleven, and twelve, and sixteen, and still walked in a wild, crazy swaying pattern and crashed to the floor on a regular basis, and more and more I looked over the border into Italy and saw the kids I went to school with doing all their Italian things. It was hard to stare for too long, though, so I’d look around Holland... but most people I knew there didn’t venture to the border. I felt like I was in exile, not a citizen of either Italy or Holland.

Looking at the world from the wreckage of what was supposed to be my life.

**Not a shiny happy post. I'm sorry**

Have been struggling with what to say lately. I just don't know. I started this blog absolutely sure I would go into psychology, wanting to read the blogs of parents "in the trenches" and offer what support I could. I still want to do that...the support part. But I couldn't hack it in university, and I moved out of my mother's house, and my mother's marriage disintegrated and things are so much better....except I don't have my education, am struggling to manage with just barely enough money, am drowning drowning drowning and waiting for a break...

Physio twice weekly... so tired...don't want to leave the house anymore than that...

I never knew it was possible to be so happy with some things and so lost with others.

I don't know what to say anymore. I don't know if there's anything even worth saying.

Last Surgery Post- Contains Xray image

This is what all the fuss has been about.

The Real Santa Claus- Possible tissue warning

Hi, all- I hope you've had happy and peaceful holidays so far.

Mine were a little different than normal, but still very nice, but this is not a post about my loot from Santa or exactly how much junk food is in the house at present.  Instead, this is a true story that was shared with me by Lady's cousin Chip who is a NICU nurse, as we spent time with their family on Christmas Day.

***

"I saw the real Santa Claus last night," she said to me, and I smiled patiently, thinking she was teasing.

"Oh yeah?"

"No, I really did. He's been the Santa for the Downtown Christmas Parade and for the Children's Hospital for the last 30 years."

"That's commitment," I remarked. "He must be a really nice man."

"You have no idea. He comes into the hospital every year the week before Christmas and visits every single child. Every ward, every floor, from Pediatric Oncology to my tiny sick babies. He takes a picture with each one, and comes back on Christmas eve to deliver the developed pictures to every little boy and girl, or Mom, who's still there. The kids who get out get them mailed to them."

"Was he by last night?"

"Yes- He went to every single bed space and incubator. There was a little girl there about 5 years old who we had let in because it was Christmas Eve. We told her Mom he was coming and she said the little girl was kind of afraid of Santa but she hoped he could get some nice pictures of the little girl because she wouldn't sit on the lap of the Santa at the mall. Her baby boy was really sick too, so she liked the idea of having their picture taken together by our Santa."

I was well hooked on the story by this time and I asked,

"How did she react to our Santa?"

"Well, she heard his bells coming down the hall and she ran to peek out every minute or so, and come back to tell her Mommy 'Mommy, Mommy he's coming!' When he came in, he doesn't come in like most Santas with the big "Ho Ho Ho!" He's very meek and mild because most of our kids are so sick, so she sidled up to him and he showed her a book he had made about 15 years ago that shows the plane he uses when there's no snow, and the special entrance he uses to get into the hospital."

"That's amazing," I could feel myself smiling. "Did she sit up in his lap?"

"She sure did! Her Mom was so happy she was snapping away with her own camera trying to capture it. Then Santa asked her what she wanted for Christmas, but she only said that she wanted him to see her brother because he was really sick."

"Did Santa go over to the incubator?"

"Yup- He's got the poses down to a science. If the baby can be taken out he'll take them up in his arms or just cradle them. If they can't come out of the isolette, he'll peer in at them, it's so sweet."

"What a beautiful story...what did the little girl do then?"

"She was really proud of the baby, and Santa's daughter happens to be our pediatric cardiologist who makes her rounds with him. Santa carries a bear on his mailbag every year and he chooses one child in the hospital to give it to. He tried to give it to the little girl, but she wouldn't take it at first because she was afraid he might be lonely for it."

"I can't believe there are still people like that in the world," I said, feeling the need to track down some tissues rather quickly.

"Tell me about it." Chip answered. "His daughter just looked at him with such admiration- I mean everyone looks at their Dad with admiration- but this was just *awe* at what a good person he was."

"It must be a calling."

"It must be. Do you know what else he did last night?" Chip's eyes began to fill as she brought it up.

"There can't be more..."

"Yeah, there is. We have one baby  who we've had for months, and whose parents don't come to visit him. Santa asked why he was all alone. We explained that he didn't get visitors- no one would have known any better if he had just passed that baby by or had just leaned in over the incubator for a quick picture- but Santa asked for a rocking chair instead. He took that baby boy out, with his ventilator tubes, and rocked him to sleep. Everybody cried."

"I bet they did!" I could barely get the words out. "I guess you really did see the Real Santa Claus last night."

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!

So...very tired... but hot pink

Healing is hard work. Usually I catch a nap in the middle of the day and head to bed early. But I had an appointment with Dr. Rock yesterday.  Everything looks good- My foot is, in his words, straight as an arrow.  I'm going to be in cast for quite a while, though, so once the stitches and staples were out I decided to pick a colour. I think you'll agree it's very Rolladyke