Adoption Interview

Adoption Bloggers Interview Project 2012

Monday, October 19, 2009

What DO princes do?

Before I get into my SPD part of the post I have several fun Hannah stories I want to share. Princess mania is still rampant in our house. Hannah loves anything princess related and doesn't stick completely with the Disney Princesses although she certainly knows them well. I had no idea how much she had internalized the "princess persona" until last month when my dad came to visit. During his visit, Hannah asked him to play princess with her. She said that she would be the princess and he could be the prince. Grandpa asked her how you play "princess" and she replied, "I'll just lay down and then you kiss me." She then proceeded to lay on the floor (in full princess dress-tiara and all!) and close her eyes and wait to be kissed. When my dad grabbed her hand to kiss it he was reprimanded and told, "No, not on my hand! You kiss me on my lips." OH MY GOSH! What is Disney teaching my daughter? Her main objective as a princess is to be kissed by the prince. As if that wasn't bad enough, when asked what a prince does she replied that princes kiss the princess, help her up, and dance with her. At first I was appalled at her over simplification of the role of prince until I thought about it from her limited perspective-Disney. What do the princes in Disney do? They kiss the princess and wake them up from sleeping, they help them, and they always, always dance with the princess. For pete's sake, the princes of Disney don't even have names! Well, except for Prince Phillip in Sleeping Beauty. He has a bit more of an active role than the other princes. That same day that Hannah was conning Grandpa into playing princess with her, she began calling her daddy her Royal Prince which quickly morphed into Royal Daddy. Daddy gets Royal Daddy and I get, "Mommy, you can be the girl prince and kiss me because I'm the princess."

Ok, enough about royalty. Here are some other random "kids say the darnedest things" snippets. One day before church we realized that Hannah had outgrown her dress shoes so I pulled out a pair of shoes in the next size up that I had bought from a yard sale last summer. These new shoes had very small square heels on them. She was so proud of her new shoes and how they clacked on the wood floor when she walked. She excitedly exclaimed, "Look Mommy! I have up heels!" Any guesses as to what she meant? I burst out laughing at my poor girly daughter trying to gain feminine knowledge from her non girly mother and getting so horribly mixed up. :)

Here's another preschooler observation for you. Hannah called to me from the bathroom one day and I asked her what she needed. She replied, "Mommy, pee is like a shower from my butt." That it is sweetheart, that it is!

Finally, Hannah made her first real joke the other day. We were driving by a large hotel near our house that has a huge lawn that they often rent out for various events. Several times over the summer right after we moved into our house the hotel hosted dog shows. So often in fact, that Hannah started calling the hotel the dog show even when there was no dog show going on. On this particular evening as we were driving by the hotel there was a huge flock of Canadian Geese on the front lawn. Hannah noticed the geese first and exclaimed, "Look! There are geese at the dog show. It's a Geese Show!" Then she burst out laughing, knowing that she had just said something funny.

Ok, now back to our regularly scheduled programming, SPD Awareness Month. Hannah has an oral fixation and almost always has something in her mouth. When she is anxious or scared she will gnaw on whatever is available. This chewing is calming for her so we try not to discourage her because we like it that she has discovered a technique that helps her self regulate. Unfortunately, the things that are most readily available to chew on are her hair, clothes, or even her hands. Besides being unsanitary, soaking wet hair and clothes are just gross. We started thinking about what we could use as a substitute that would satisfy her need to chew. The first thing we found that worked well were simple teethers. At home Hannah still uses them, but the problem was that they weren't practical when we were out places because they were easily lost and they were quite noticeable. Because Hannah looks older than she is due to her size, she draws stares when others see her chewing on a baby teether because they think they are seeing a 5 year old chomping away. We didn't have any other alternatives until we moved here to Rhode Island and her OT suggested that we make her a bracelet that she could always wear that she could also chew on. She took a length of medical tubing and cut it to length to fit Hannah's wrist and tied some knots in it and Viola! We had a winner. Hannah's chewy bracelet has been a life-saver. We rarely go anywhere without it anymore and Hannah has it with her so it eliminates the need for her to have to ask for her biter. She can just start chewing away any time she feels nervous. I'm really hoping that this will help save her hands this winter because last winter she went through a period where she was particularly anxious and the combination of her chewing on her hands and the cold weather led to raw, red, bleeding hands.

Hannah's tactile sensitivity has seemed to be increasing lately. Well, we think it's increasing, but the reality could very well be that her ability to tune into her own body and communicate what she is feeling is getting better. Besides picking at her toes until they bleed, Hannah has started complaining that her socks and her coat hurt her. She has also started to say at times that tickling hurts her. The sock problem I've pinned down to the seams inside the toe. I've managed to solve this problem by letting her wear them wrong side out. The coat problem has been harder. I'm not exactly sure what it is that is bothering her. Her spring coat didn't seem to bother her and this is the same winter coat she had last year and we didn't have a problem last winter. It's a bit of a mystery and she can't really seem to tell me what she doesn't like about it, only that it hurts. The worst by far of her tactile sensitivity issues though is when she goes to the bathroom. Every single time she goes to the bathroom she either tries to wipe her labia raw or as soon as she pulls up her pants she starts crying that she's having an accident when she's not. I've tried doing the wiping, but it doesn't seem to matter how much I wipe. It's never enough. I've felt her to see if she really is having an accident or if there is still moisture, but I can't feel ANY moisture at all. The screaming and the meltdowns that occur after bathroom trips are awful. Not only is it upsetting for Hannah, but it can make it really hard to get out the door since she will insist she is having an accident and want to get back up on the toilet again, and again, and again with no results each time and no actual accident. UGH!

To close, here are some links to some of my favorite SPD bloggers. Enjoy!

Hartley's Life with 3 Boys


Patty O. said...

I love those stories, especially the shower from the butt! Too funny. The other day my daughter said the pee was talking to her, so now when anyone is peeing she tells me what the pee is saying.

I keep meaning to do an SPD blog post this month and can't figure out what to write about. I am going to do at least a couple before the month is out. You have inspired me!

jess said...

thanks for the shout out! a thought about the coat? winter coats tend to have collars that are particularly rough (all those seams, tags, zippers, buttons etc convening right around the neck!) we've had great success with hooded, long sleeved soft tees layered under clothes. (old navy made great ones last year that were tagless and super soft - they probably still do.) when it's time for the coat, the soft hood goes up and protects little necks from the ooglies. and of course she's sensitive. she's a princess!! :)

m said...

this is such a difficult topic. the sensory issues are just so difficult to get words around. i realize that, for one thing, there's just no vernacular to refer to. research is only just now providing some basic conceptual frameworks to utlize when it comes to what the sensory issues are, what's at the root of them (proprioception, that sort of thing). the words that one can refer to are scientific...they really don't convey any of the subjective sensations. that word bank just doesn't exist yet and it's enormously frustrating. there are things i experience every day...and i'm a very word oriented person...yet i cannot even begin to get words around it. it's the big missing puzzle piece when i'm posting. i'm failing to write about the most common experiences, issues relating to AS.

things i know, just to list a few issues:

i isolate every year in fall, tend to be much more socially withdrawn. i wonder if it's because the quality of the sunlight changes. the position of the sun shifts...and it's no longer the yellowish light of summer. it's much more "white", harsh. it's a tough transition, just changes my overall comfort level when i have to leave the house.

i tend to buy clothes at thrift shops. used clothes have been washed repeatedly, they're softer, pre-cozy.

it's a minor thing, but my hands are over-sensitive in a lot of ways. metal, consequently, is sort of off-putting to the touch. i can eat using regular utensils, get by, but over the years, i've learned to use chopsticks. they're wood, comfortable. i gear most of my food purchases around foods i can eat with chopsticks. not always, but as often as i can.

and so on.

a lot of this won't relate to hannah specifically, her unique needs, but for me it's been a long process of identifying sensitivities and then getting creative. used clothes. chopsticks. sometimes? like when the sunlight changes? there's nothing to do really, it's just a month of social isolation. hannah, with her diagnosis now, so young, you and her are going to get a handle on all of this earlier. the trajectory of identification,'s painful, lonely (for both of you), but the problem solving're doing that. just experiment, try many different things, keep up the trial and error.

hope you guys are well, having an easier week. and gearing up for a good halloween.

Anonymous said...

about the coat issue: is it fleece lined? that presented quite the problem for my child at that age. it was hard to get on and off (increasing frustration level) and it was too much sensory input even if it was soft.

Hartley said...

I have the BEST idea for your princess--

A "Heart-String" necklace. Yes, it is a necklace with a heart on it, fit for a princess, but also a SPD teething toy!!

Woo Hoo!

I have wanted one of these since I first saw them, but sadly I have all boys. :(

Thanks for mentioning my blog!

Your blog is great--I'll be back to see how the princess does.

Corrie Howe said...

Thanks for coming to my blog. I can relate to many of the things you write and all the OT equipment. Did you OT tell you about an on-line OT catalog called "Abilitations?"

They have lots of different chew gadgets. Some hang around the neck.

Even though I'm not an OT, my OT told me about the magazine and website. I can go on there and find things I think might help Jonathan out.

Look forward to following the princess around.

Tanya @ TeenAutism said...

We're on the same wavelength! I just wrote a new sensory issue-related post right before I noticed your link - thank you! Best wishes to you and your princess :)

pixiemama said...

Just as I was envying her new chewy bracelet (Foster is really gnawing his fingers lately and I can't stand it anymore, since when he isn't gnawing on them, he's "exploring" with them *gag*) I saw Corey's suggestion of checking the OT catalog. They have to have something appropriate for an almost-7-year-old boy in a mainstream classroom... right?

Here's hoping, because, while a lot of things are painful for me to see, the fingers-in-the-mouth deal is making me REALLY crazy.