A Window into a Strange World…

Most of my posts have been about my daughter and how her Sensory Processing Disorder affects her life, how we all cope, and how a seemingly benign day trip can turn into an adventure.  Through all this though, we still don’t have a good understanding of  how she feels and why certain things set her off.  While I may not need to understand to find coping mechanism, it would be helpful.  After all, it’s easier to navigate an unknown room with a flashlight, you’re less likely to walk into a wall.    Recently, thanks to A’s early intervention specialist, we have been given that flashlight in the form of a YouTube video.

This video is about an autistic girl, but it gives a window into the world that my daughter lives in.  A may not be autistic, but the sensory issues are the same.  Granted, A is not as severe as this girl, and I am in no way seeking to compare my situation to what this family lives through.  However, the small glimpse into the world that these children live in has helped me to better understand A’s difficulties with the world around her and teach her to cope in a positive and effective manner.

While most people will never have to suffer the heartache of watching your child struggle to eat or communicate or do things that “normal” children do, I think this is something that they should still see.  It might help all of us better understand why these children do what they do.

No, those are not earrings…

They are earplugs.  Yes, earplugs.  My 2 year old is wearing earplugs not earrings.  Why?  Wait, let me first sift through all the not so appropriate and borderline rude responses that come to mind before I answer that one.  Sigh.  She wears them because it helps minimize auditory input and the screaming.

Wait, you say, wouldn’t that work better if you were wearing them?

Well, yes, technically speaking it could work that way, but I have discovered that putting earplugs on A blocks out enough sound that she stops screaming and is able to focus better and even talks (or tries to) more often.  The biggest benefit of earplugs I found was that she actually eats all her dinner.  For the first time in a year she ate a dinner that was entirely solid food (translation, no yogurt, applesauce, or anything else that could be eaten through a straw).  She even ate a piece of bacon.  Of course, she was still full the next morning since her system is not used to getting that much actual solids all at once.

I’ve started using them anytime either Mr. Potato is (literally) all ears or A covers her ears when we are just talking.  They have worked wonders.  Sadly though, when we are out I have to deal with people’s questions and stares.  Now, I don’t mind the questions, in fact, I welcome them.  Very few people are familiar with Sensory Processing Disorder and the various….fun aspects of dealing with the ins and outs.  I appreciate having the opportunity to educate people about SPD.

I have a problem when people respond by backing away like my child has some sort of strange, communicable disease, or rabies.  Or they tell you in so many words that there has to be something wrong with the parent for the child to “end up like that.”  Come on people, you think I chose this for my daughter or she chose this for herself?  NO, I am NOT a crummy parent that let’s their child walk all over them and I am not some “kid with a kid” who doesn’t know what they are doing!  I have been actively making sure my daughter gets the help she needs to adapt to her situation.  So until you have spent a month, a week, or even a day dealing with what I have to 24 hours a day, 7 days a week, don’t you dare judge me or my child.

Okay, rant done.  I’m sure for most of you I’m preaching to the choir, but sometimes even the choir needs a reminder…I know I can be judgmental sometimes even when I don’t mean to.

Over the past few weeks I have watched my daughter eat more in one sitting than she ever has before and enjoy what she was eating.  I have heard her try to use words instead of just screaming and I have heard new words from her.  It’s not all been positive.  She is experiencing extreme separation anxiety again, making bedtime all kinds of unique fun for me; but she is learning to manage it on her own somewhat and we are beyond proud of her.

I digressed from where I was originally going with this post, but that’s what happens when the rant and lack of sleep take over.  So now that we’ve been on this merry goose chase that resembles some of my days, I think it’s time to get some shut eye so I can tackle tomorrow’s challenges, whatever they maybe.

Wearin’ O’ the Green

It’s a little late but, Happy St. Patrick’s Day to all!  We have been so busy with some new (and mostly positive) developments with A that trying to find time to write (and sleep) has been next to impossible for me.

We, well actually I, decided that we were going to attempt going out to a street festival for St. Patrick’s Day.   Knowing that it would be busy, noisy, and have lots of smells I decided to gamble and go for it.  Happily, it turned out really well.

A and her brother both love music and were completely in their element with all the different forms of Irish music that were performed.  It was fantastic to watch my child who normally cowers from any sort of loud noise or busy group run up to the stage with her brother to dance (or try to anyhow).  She was happy as could be, as long as her brother was in sight anyhow.

And while she may look adorable wearin’ the green, she certainly wasn’t about to eat any of the green (or any other color there for that matter)!  We have discovered that A eating when we are out can be a bit dicey.  Thankfully, this particular street festival had a nice little park in the middle that was perfect for eating (especially since that’s where all the food was).  I had to have A sit on the ground behind her stroller where she couldn’t really see what was going on around her before she would eat her yogurt (it’s like American Express – never leave home without it). But, we made it successfully through the day giving me hope that we can repeat this experiment again.

Of course, after the weekend was over she fell apart and has been struggling with chewing and swallowing almost anything thicker than yogurt.  She hasn’t given up though, and if she hasn’t we are not about to either.



The Marvelous Mr. Potato Head and Ice Cream

Potatoes.  They are fantastic and very versatile. In fact, I bet you thought of at least three different ways to eat them just now.  Let’s see, mashed, baked, and french fries.  Yep, the most common incarnations of the potato, all of which A detests with a passion.  Actually, she detests potatoes in pretty much any form, even soup.  I make a pretty good potato leek soup – I’m not bragging, it’s a fact since leftovers rarely last more than 2 days around here (I make a lot).  I thought that maybe, possibly she might go for soup.  Smooth texture, no chewing required, just swallow.  I even let her try it with a straw (hey – it works with yogurt!).  Sadly, no luck.  So that sound you just heard was my hope of getting her to eat veggies and other things by pureeing them into soup going splat.

Food has been tough recently.  A got past the teething thing (2yr molars = no fun) and I thought (silly me) that things might get a bit better without the sore mouth.  WRONG!  It seems like she’s more sensitive than ever.  Even peanut butter (one of her favorite foods) is giving her trouble most days.  Although, the one thing I am guaranteed that she will always eat is vanilla ice cream.  No, not chocolate, strawberry, or any strange flavor, just plain vanilla.  Ask A what she wants to eat and she runs to the ‘frig’,points up to the freezer, and says “Hiiii dere nella!”  She then proceeds to laugh, clap, and dance in a little circle.  It’s actually quite funny to see and hear.  Doesn’t matter the meal, she wants her vanilla.  Yes, I have to admit there have been times out of sheer desperation (i.e. – she hasn’t really eaten much of anything that day) when ice cream is part of her dinner.  Totally healthy? No, not at all.  But I have learned that sometimes you have to throw what’s accepted as unhealthy out the window and find a way to make it healthy.  Granted, I would not let her eat ice cream for every meal but I have learned that on really bad days a small amount with lunch or dinner encourages her to eat the rest of what’s offered to her (even if it is only a peanut butter and jelly sandwich).

Does this make her brother jealous?  You bet.  But he understands, in his own way, why we let her have ice cream as part of her meal instead of after.  In all that we have to go through with A, it can seem like G (her big brother) is getting slighted.  We try very hard not to treat A differently than you would treat a “normal” (i.e. – a child without special needs) 2 year old.  Sometimes it’s difficult though when she’s having a bad day and I am desperate to get her to eat something or to stop biting and hitting and banging her head on the floor or wall.  Strangely enough though G understands.  He came to me when A was having a particularly rough day several months back and I was feeling incredibly frustrated and helpless and worried that he would think I was ignoring him and told me, “It’s okay Mommy.  A just has sensory problems like I have allergies.  Not much you can do when it’s a bad day.”  I almost cried.  Sometimes kindergartners are smarter and more intuitive than a room full of adults, even on bad days.

Bad days.  Sometimes it seems like the week is nothing more than onelong bad day.  It can be almost impossible sometimes to tell what kind of day A is having or what is going to set her off.  Until I discovered the Mr. Potato Head-Sensory correlation.  Yes, Mr. Potato Head the toy.  I have not dressed up and named an actual potato for my daughter to play with in the hopes that she will eat a potato…yet.  Actually, what I discovered after watching her play with a potato head over several days is that the way she builds it reflects whats most sensitive that day.  We stumbled on a Mr. Potato Head Silly Suitcase in a thrift store with a ridiculously cheap price attached so we now have lots of eyes, noses, mouths, arms, and other parts for our potato head.

Now, A knows where all the parts (eyes, nose, mouth, etc) should “traditionally” go, but I noticed something funny one afternoon when she was playing with it.  She put nothing but ears all over the potato head.  That particular day she had been falling apart if there was any excess noise around her (i.e. – TV, music above a certain volume, toilet flushing, sink sprayer, loud car, you get the idea).  The next day it was the same thing.  The day after that she covered the potato head with arms.  That day she didn’t like being touched, hugged, or any other form of contact unless necessary.  Noticing a pattern here?  I was slowly beginning to see it myself (hey, blame lack of sleep – it makes things register slower).  How she built the potato head seemed to correlate to the sensory special of the day.  Covered in eyes?  Couldn’t handle too much visual input.  Ears?  Skip the loud music and redefine the phrase “I’m all ears.”  Mouths?  Be prepared for major food refusal.  Some days she builds it with all eyes then takes it apart and rebuilds it with all ears.  Those days are rather scary. Actually, any day that involves multiple Mr. Potato Head incarnations is scary.

I do have to say it’s getting easier though since I have learned to pay attention to little things like the Potato Head fashion of the hour and A is getting better at communicating with me, even if it’s not always verbal.  She is biting and hitting less and her tantrums are shorter, which is always good.  Hey, it’s been almost 2 months since she bit someone!  The progress we see now after a year of therapy gives me hope that by the time she transitions to school I may not have to be known as the parent of the class biter or something equally as unpleasant as that particular title.  Now if only potty training could be so easy!