Monkey wrenches and other hiccups

With the arrival of Memorial weekend comes an increase in reminders that hurricane season is “just around the corner!”  That also translates to time to start making sure you have emergency supplies on hand.  Normally,  I wouldn’t think twice about what we would need.  I mean, enough canned food and water per person to last 3 days.  Not a big deal right?

SCREECH!  THUNK!

That would be me realizing that I have a child that will not eat anything that comes out of a can, except certain fruits.  But only if they are cut in nice little bite sized bits.  Oh, and don’t have too slimy of a texture.  They should be sweet too.  But not too chewy or too crisp.

Yeah…this year is going to be more difficult than I thought.

Realizing the extreme limits of my daughter’s textural tolerances when it comes to food has led me to adjust most areas of planning for things.  Sadly, for someone who has lived in a hurricane prone state her whole life, the thought of how I would have to adjust emergency planning never entered my head.

I think on some level when we started this adventure I bizarrely hoped that we would wake up one morning and she would be “normal”, at least with food.  Even knowing that my child would spend the rest of her life with sensory issues, I still would, forget I think is the best word for it.  It’s not quite denial but it is those moments when acceptance is harder than normal.  When you want to cry and scream at the injustice of a child, your child, having to live with something that makes their life so much harder, until that moment when you realize that they don’t see themselves as different.  That they don’t see this as an injustice.  That, to her, she is just A.  Her mommy’s little monkey.  Her daddy’s little girl.  Her brother’s playmate and, occasionally, his annoying little sister.  That, more than anything else, is what gets you through the day sometimes.  All the advice and support in the world can only get you so far.  It’s those moments when you realize that, to them, they are “normal” that can get you through the tougher moments (even if they do seem to last for weeks on end).

So, I’ll take a deep breath, go back to making my hurricane emergency box list and hope I never have to actually put it to use.  But I’m still stocking up on peanut butter, crackers, and pediasure  just in case.

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Of Elephants and Playrooms.

I recently read a rather interesting book about special needs children.  It’s called The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs by Denise Brodey.  It is very different from other books in that it is written, as the title suggests, by everyday parents who deal with the daily challenges of raising special needs children.  These are people who have written honestly about how their child’s diagnosis changed their lives, for better or for worse, and how they had to deal with it.

It’s not easy raising children; any parent can tell you that.  Each child presents their own unique challenges and joys. But, what do you do when your child is outside the recognized norm?  How do you cope both before and after you have answers?  Even when logically you know that there are other people on the planet facing the same or similar challenges it can still feel like you are the only one in the world dealing with this.

The collection of essays in this book are organized into sections by topic (i.e. – To Medicate or Not to Medicate, Thinking Different, Taking Care of You, Going Public) so you can pick and choose which to read or just start at the beginning and read cover to cover.  I chose to read all the essays and came out the other side feeling like I had been sitting in a room full of people who knew how I was feeling and sympathized with what I was going through.

This book is a good read for anyone raising a child with special needs and even those who aren’t.  I think it gives a good insight into how we, as parents, feel when we see our child fall apart, or have to explain to a friend/family member for the bazillionth time why little Joey or Jessica is acting a certain way, or even when strangers stare and make comments, welcome or not.  The best part is that it helps to reassure that we are not alone and for every challenge we may face with our children there will be a triumph somewhere to balance the scales.

Today’s Forecast…

Sunny with a chance of sudden squalls.  Yep, that about covers life for the past month.  Lots of highs and lows, tears, head-banging (me, not her), and frustration followed by elation.

We have had a great deal of success with potty training.  A knows what the potty is for and about 50% of the time she makes it there before she has an accident.  Some of the accidents are more a result of lack of understanding what she’s trying to tell me than her being distracted by play.  To that end we have been working on some form of system to clear up the lines of communication, but it’s not that easy with a  speech delayed child who has motor planning difficulties.  Fingers are crossed though that something will workout if we try enough.

Unfortunately, A spent most of April battling respiratory infections and asthma issues and lost some weight as a result.  Her hard won pound she had gained over the course of 3 months fell off within 1 week of being able to eat because of her cough and sore throat.  Thankfully, with the help of a medication adjustment to control her asthma and generous amounts of Pediasure she has gained back about half of what she lost.

The hardest part of all this is trying to find higher calorie foods that are not only nutritious but that A will eat.  It would be very easy to fall into the trap of allowing her to eat higher calorie foods that don’t have much of a nutritional value to help her gain weight, just because it’s easier.

Yes, I said it. Sometimes those of us who deal with kids that have these issues contemplate and/or do something that we know may not be the best thing because it is easier.  Sometimes it’s just easier to give them the ice cream than try to introduce them to something that might be a better choice.  Especially after a very long, frustrating, and loud day.  Do I feel like I have done my daughter a disservice by not trying for the umpteenth time to find a way that she will accept avocados or pasta or veggies and dip?  Yes, to a certain extent I do.  But, more importantly, I know that sometimes you have to loose a battle in order to win the war.

I am fighting against something that doesn’t play by any set of rules that we know.  It picks, seemingly randomly, who it affects in families and to what extent it affects them.  No two cases are alike, even within the same family.  I know because my husband has lived with his sensory issues and they are different from what A faces on a daily basis.  There are days when I feel like banging my head against the wall until it hurts would be an improvement on how the day is going.  Other times, A cruises through the day like a “neuro-typical” child and I can’t believe she’s the same child who was screaming over being touched the day before.  Either way, she’s my daughter and I plan on doing everything I can to help her learn to cope with the world around her.