#tbt

This morning I was looking through some old photos trying to find some favorites to print out and frame in the new house when I came across this one...

 

This is a photo of Natalie at the park sometime in April (2014). We had been playing for a while and she was having fun.

We love taking her to this park because the sand is harder to walk in, so she gets some practice walking on uneven ground while also having some super fun family time. I was trying to capture a few photos of her walking (If you know me personally, this will not seem weird at all...) so I asked Mike to hang back a little while she walked over to the swing.

She realized he didn't follow her and walked back over to him and started pulling on his shirt and tapping his legs.

 

It was adorable.

 

When she knew she had his attention she walked back over to the swing and started tapping on it until Mike got there.

 

Natalie, as most people know, has a major communication barrier. She was diagnosed with Angelman syndrome this year. (click here to find out more about Angelman Syndrome) This was a major deal for our family! She was finding ways to tell us what she wanted, without needing words!

 

This morning I was looking at photos and thinking on each one, as mothers often do. While thinking on this one I realized that this was not a breakthrough for Natalie. In fact, I can remember several times where she was likely trying to communicate with me or Mike. Did I acknowledge her any of those times?  Probably not...

 

The day this photo was taken was a breakthrough for ME.

 

And for Mike.

 

How long has Natalie tried to talk to us and been unable?

 

How many times had she wanted or needed something, but didn't get it because I couldn't slow down and pay attention?

 

How often did Natalie suffer quietly through things I wanted her to do because I didn't see that she wanted to be somewhere else, doing something else...

 

Natalie is so agreeable. Its a characteristic of her disability. Its called "happy disposition", which doesn't really sound like a bad thing.

 

Its so easy to get frustrated when it seems like She starts crying for NO REASON. I have to remind myself daily (multiple times a day, actually) that she is upset for a reason. Did I miss the sign? Was she trying to tell me something and I didn't see it? Its difficult to tell, but I am getting better at it.

 

Just yesterday I was talking with her teachers before taking her home from school, and she was ready to leave. She let me know this by giving me a kiss and hug to get my attention (smart girl knows how to make mom stop and listen!) and then walking to the door.

 

Its amazing. Every. Single. Time.

 

As wonderful as this breakthrough is for me, I am also heartbroken.

 

I have this image in my head of Natalie screaming at me that she is lonely and scared, only her lips aren't moving and I'm too busy to notice because I cant hear the words. I cant help but cry because I just love her so much and I know I have wasted so much time only listening with my ears and not my eyes.

 

I remember having anxiety as a kid.

 

I remember waking up many nights and crawling into bed with my younger sister because I had this awkward combination of adrenaline and fear that I couldn't explain.

 

I remember being made fun of because of it, but dealing with it because when I felt that way I didn't want to be alone and she was the only person who would let me in.

 

I remember my parents being irritated laying in bed with me while I shivered even though I wasn't cold; tears rolling down my face.

 

I remember being sent back to my room & being laughed at during thunderstorms even though the fear was crippling.

 

I never could explain exactly how or why I felt like I did. Im convinced that if I could have, people would understand.

 

My parents would have understood....

 

I remember everything. I don't want Natalie to feel those things and me ignore her because I can only hear with my ears, and not my eyes.

 

Natalie has an opinion. She has times of fear, frustration, sadness & even times of loneliness.

When she is upset I have to remind myself that her disability does not exempt her from human emotion.

 

Being unable to express emotion isn't the same as not having emotion.

 

This is just a bittersweet throwback Thursday for me, I guess.

I Have A Wrinkle

Today I was looking at a photo that was taken of my daughter, Natalie, and myself when I realized I had a wrinkle. In the photo I was laughing so I wasn't sure at first, but after carefully checking the mirror this morning it was confirmed.

I have wrinkles.

Small, amazing wrinkles.

I confess that my first though was something along the lines of how horrible it was that at my age (24) I had to "worry" about wrinkles. That thought faded quickly as I took another look at the photo.

I remember the moment this photo was taken. It was Thanksgiving 2013 and we had driven 4 hours that morning to spend the day with my dad, sister and their families. Natalie was so happy to see everyone that the whole first hour she was unable to control her laughter and smiles. I remember looking at her right before I scooped her up, thinking 'I have the best life'.

My daughter didn't laugh until after she was 9 months old. That sound was not only the most amazing thing I had ever heard, but was a comfort and reassurance to me that my child was happy and secure.

Every time I hear her laugh I am grateful. I am overwhelmed with love and joy. I am swept away by that same peaceful reassurance I felt the first time I heard that little giggle.

My husband will tell you that I am a "Negative Nancy". I prefer to say that I am a realist. His is much more accurate...

At only 24 years old I have smiled and laughed enough to have a permanent reminder on my face.

I do occasionally get pity from others who think it is difficult to care for or love my child. This has always gotten under my skin and now, I have some proof of how lovely she has made my world. These wrinkles are my face's way of saying "good morning! I know your going to smile many times today and Iv got that covered. I have even made it easy for you with this little crease here so you wont have to strain so much to do that weird squinting thing you like to do when you laugh. No need to thank me, just keep being awesome."

I pray that these tiny marks grow larger and deeper. I pray that the joy I have in the Lord and his blessings to me are evident when I smile and laugh. I thank God that at my age I have a reason to have wrinkles.



Dear Parents of Average Developing Children

This last weekend I had the pleasure of meeting some of the strongest, most amazingly motivated women in the state of Louisiana during the 2014 Partners In Policymaking first class/session. (This is a 6 month crash course on how to be a better advocate for those with developmental disabilities) I am not the kind of person to speak up when given the chance. I am, however, completely comfortable documenting my experiences and opinions here for the entire world to see (ironic right?) and so here I go.

It has been the general consensus of the self advocates and of the mothers in the class that inclusion is the most appropriate way to encourage the abilities of those with developmental delays. Throughout history, and even today, this is not happening. In fact, quite the opposite is going on right under our noses. So, I am here to say to you, parents, that you are the only way this world is going to change.

There is one basic and simple way that you can help to make this world a better place for those with developmental delays. This will not only effect those with the delays, but society in general....

Let me explain.

I work at a preschool (Goldman School) that is an inclusive environment. This means children with and without delays are in the same learning environment and do the same crafts and activities. They eat their meals side by side at the same table & they play outside together on the playground. When required, teachers give assistance to the children who need it and everyone is given the opportunity to be included in every aspect of the daily routine. For the few that do not know, my daughter Natalie has developmental delays. We enrolled her in this childcare center last year and after seeing the progress she has made there, I took up employment. Not only do I see how this "inclusion" effects children from a teachers eyes but, I see it from a mothers eyes as well. The children that do not have delays learn a patience and kindness from being there that other kids are missing out on. They are learning quickly how to see things from another perspective instead of their own. The children with delays become more social as they play along side friends their own age. They pick up things quicker by watching and interacting with the other children. Most of all, they laugh and play like children should because they are secure in the environment they are in and feel cared for by the people they see everyday.

When children with developmental delays learn and play alongside children who do not, both children benefit. What children learn, then, is that everyone is different & the proper response to that difference is kindness.

What can I do? You ask... well, I will tell you....

When your young child is in the store with you, staring (and maybe even pointing), wanting to ask a question about the kid in the wheelchair or the one with the feeding tube.... let them. Do not be afraid that your child will say or ask the wrong thing. Trust me when I say that it will be okay. Your child's pure, unedited curiosity about my child with a disability is FAR better than the fear that comes with not knowing.

Often I see children in the store wanting to talk with Natalie or play with her and their parents just "shhh"' them and quickly brush them along with that "I'm so embarrassed by what my child just said/did" look on their face. Or if a child does manage to get the question out the parents may apologize to me and tell their child not to ask questions or say that what they asked was rude (etc.). This should never be done. While I am sure it is well intentioned, it does more harm than good. If a child is never allowed to ask questions or be around those with disabilities, they are naturally going to think it is a bad thing.

Quick! Think of something you have desperately tried to get your child's attention away from recently.... The candy isle? Something they shouldn't have seen on TV? A word that slipped out that they keep trying to pronounce? All of them are negative, right? Don't let "asking questions about people with developmental disabilities" be on that list. Simple.

Allow your child to play with mine. Allow your child to ask questions. Allow your child to be curious and stare. The best thing you can do for the world, right now, is to just allow them to be the naturally accepting people that God designed us to be.

"Barriers are not created by disability, but by society's response to it" -Unknown