Remembering everyday...

Photo courtesy of http://www.simplyconnectedphotography.com/

Recently, I saw the Facebook post claiming that it was Special Needs Awareness Week - and by updating your status with a kind phrase regarding children with special needs you were raising awareness. Yes - kinda like those chain letter type things - the difference with this one was that I do have a daughter with special needs - and too much awareness is never a bad thing!

The Facebook campaign got me to thinking about my wonderful daughter, and how far we have come in the 2 years since her initial diagnosis. So, not to look like a dummy - I googled "Special Needs Awareness week" to find out the 'actual' week. Couldn't find it. I googled "Children with Special Needs week". Couldn't find it. I googled "Special Needs 2011." Couldn't find it. My conclusion...there doesn't appear to be a clear "Children with Special Needs Awareness week."

So...I am doing my small part to ensure that every single week of the year is "Children with Special Needs Awareness week."

I have been blessed with two beautiful, healthy daughters (who drive me crazy on a daily basis). My mommy "radar" was triggered with my youngest when I found myself translating her speech to almost everybody. She tried so hard to 'mimic' a true conversation...but mostly ended up sounding like "bla ma dee ba do to ma cookie". I would tell people to focus on the "last" word of her sentence, and figured all of those other little words would happen eventually. As she got older her ability to memorize phrases, movie scenes and all of the planets in the solar system was uncanny - and my little 2 year old delighted our friends and family with her chronological planet descriptions - right down to "joopita and da wed spot". She memorized simple 'phrases' that she would say at the wrong time, like "it's not safe" or "sewiously?" -in turn, making everyone laugh, and deflecting from the real issue.

I arranged for her to have a speech assessment at the age of 3 and a half - as she had just started pre-school and seemed "lost" in the shuffle. I will never forget - watching as my daughter struggled with the basic language questions, becoming more and more withdrawn, slumped in her chair, struggling to pay attention. My heart was being ripped into pieces - yet at the same time, a lightbulb was going off in my head. She really didn't understand. Her diagnosis was a severe receptive language delay with a moderate expressive language delay. My world crumbled...my perfect little girl was broken...and I had no idea how to fix her. My friends and family were kind and patient with me as I struggled with the guilt, anger and denial. Finally - came acceptance.

Basic language is something we all take for granted. How do you explain to a 3 year old the difference between a light being "on" and a cookie being "on" the table or putting "on"a coat ? Same word - completely different meanings. All of these basic concepts were the things she struggled with. Up, down, in, out, he, she, beside, in front, behind, together, apart, above, below...how do even begin to teach these things that to a typical learner are just second nature?

We have since enrolled her is a school for children with disabilities - where she works with a speech therapist on a regular basis. Because of the diagnosis - she qualified for government funding, and we meet with her therapists to design and implement a "IPP" (Individual Program Planning) to determine the best way to help her learn. She has her good days, and her bad - and we have worked hard in keeping the communication open and consistent to best help my daughter cope and develop. Every day presents new challenges - but I look back at how far we have come, and how much my daughter has taught me about the "simple" things in life. I take each day as it comes, try to slow things down and deal with all of the "big" issues in small, manageable chunks. I challenge anyone to spend 5 minutes with her, and not fall in love with her infectious personality. She is genuine and real, and has made my life better in so many ways.



She is my awareness everyday...with or without an officially "designated week".

Busted!

I'll admit it. I did it. I thought every parent did it. Maybe they do, and just don't want to admit it-but I lied to my kid. Well - not really l-i-e-d...more like avoided the truth. And I got busted! By a six year old! Here's how it went down...

We have always eaten fish - and salmon is our family favorite. I have an awesome recipe for a coconut baked salmon served over rice that the kids have always devoured. I would sit back, smug in my chair, arms crossed with a look of complete victory as the cleaned their plates thinking "I am such an amazing mother - my children eat fish, and like it - ha!" Never mind that it is disguised and buried in a creamy sauce, and cut into small pieces, mixed together with rice...that's not the POINT! They eat FISH! Woo hoo!

One day, after such a meal - my oldest walks over to my side, and looks down at my plate at a piece of salmon skin I have pushed off to the side.

"Mom, what's THAT?"

"Oh - that's just a piece of skin from the salmon" I say, swigging down the rest of my wine - hoping this conversation will end...NOW!

"Skin? It looks like fish skin." Her eyes begin to widen, her mouth open in horror as the puzzle pieces start clicking together...

"Who wants ice-cream?" I shout, jumping up from the table.

"MOM!" She yells at me, then narrows her eyes at me, speaking very slowly so as I can not pretend to mis-understand the question (as I often do...)"Is salmon a...fish? Like a real fish?"

I take a big sip of wine...I mean water..."Yes" I squeak, head hung in shame...

"EWWWWWW! Are you serious! Fish are nature, I don't want to eat NATURE! I am NEVER eating salmon again!" Tears, stomping and huffing follow, along with a door slam to her room.

Busted! Needless to say - our traditional steak and lobster tail New Years dinner was not well received that year either...



Now when she asks me where bacon comes from...I just smile...and tell her Sobey's...

A reason to laugh...

I love how things change so quickly. One minute I was a skinny smart mouthed 23 year old who was getting her education in Early Childhood Development. I was promoted to Director of a large Daycare Centre - successfully managing 116 children, almost twice as many parents and 18 staff members. And the best part was...I knew EVERYTHING. Especially about raising children. It was easy, really - we learned all sorts of tools and coping strategies in school. And if it was written in a textbook - it must have been right...right?

So - needless to say - I was happy spouting off snipets of my vast knowledge to parents - offering suggestions, ideas and words of wisdom to help with the seperation anxiety, eating problems, behaviour issues and so on. After all - I knew EVERYTHING...right?

What I didn't know then was something that I learned very quickly after I became a parent. They were all probably secretly LAUGHING at me! Why? Because I know for a FACT that I personally would laugh my butt off if some young childless "expert" tried to give me advice on what to do if my child flings herself onto the floor in a complete meltdown after fighting with her for 20 minutes to pick-out a pair of socks to put on before the bus comes in 2 minutes and the elastic is too tight and it "feels funny" underneath her pants, and it was my fault she was late because she didn't want her toast cut into triangles and that's why it took so long to eat, and she couldn't find her library book because she put it on the counter, and someone else hid it from her, after her sister took her favorite blue jelly bracelet and kept her up all night because she snuck into her room and kicked her in the head...

I would probably smile through my morning sleep deprived eyes, take a swig of my 3rd cup of coffee since 5:45 that morning, pull up the elastic on my milk-stained yoga pants...and laugh...