Friday, October 9, 2015

Why I feel like an outsider and an insider as a special needs mom

As a mom to 2 little girls, my oldest Anna who is 4 and just as funny and loud and precocious as any 4 year old can be, and I'm Zoey's Mommy. Zoey is 3 years old and she was diagnosed at 21 months with autism, sensory processing disorder, and global developmental delay, she was considered severely nonverbal with no guarantee of speech, but if you've followed our journey on  you can see by her videos that she's proving them wrong!

We have some pretty significant challenges in our family and we have to take extra precautions to ensure safety for both of our girls. With a 4 and 3 year old, ya gotta be quick and ready for anything!

Zoey needs 1:1 supervision throughout her day at all times. She is impulsive and does not answer or quite fully understand verbal commands, such as "No, Stop, Get Down, Don't touch...DANGER!"

This makes everyday life just a bit harder. She's still in diapers, and I don't know when she will be out of them, she can't stand the way clothes feel on her, so she often strips down to nothing, going places is almost impossible because anything could set her off, bringing her into stores, birthday parties, county fairs, even family gatherings can trigger a meltdown. We've learned through trial and error what works and what doesn't work. 

Music works! She takes my iPhone and she skims through each song and she is instantly calm and we can avoid or quickly end a meltdown, usually. It depends on the setting. 

It's hard, because I don't want Anna to miss out on playing mini golf in the summer, so she and her Daddy went while Zoey and I stayed home. My husband and I don't get to "check in" at restaurants on Facebook and post selfies of us enjoying a meal I didn't have to cook. I'm home, usually cooking 3 different meals. 
And I'm usually sadly declining an invitation to a party or BBQ unless we have respite, which we don't get a lot. 

My daughter won't stop when I say "Stop!"
My daughter won't hold my hand and we have tried every harness, she can get out of your hands and harnesses so fast. 
My daughter doesn't understand the dangers of streets, roads, strangers, lakes, pools, and rivers, or fire pits, big barky dogs who may or may not be good with small children, and my daughter can't tell me or anyone else if something is wrong or if she is hurt! 

I see families apple picking, hiking, biking, trips to the circus, fairs, amusement parks, soccer games, dance recitals, birthday parties, and going to the movies as a family, oh boy that one hurts! I would love for the 4 of us to go out to a movie...but that's not our life right now! 

I watch this not from being outside, I watch it from the inside of my own home. I'm inside, but I'm the outsider. I'm the Mom watching these beautiful and fun family moments from my computer screen, I'm an outsider looking at your moments from the inside, hoping and wishing that someday I'm not the insider, I want to be the outsider having these moments with my family! It's hard to explain that to friends and family who ask us to get a babysitter, or come along to the circus, the fair, or a birthday party. 

What's it like to be on the inside? 

I am a stay at home mom and I've had the honor of watching my girls go from being babies to funny little toddlers with their own individual personalities. 

I have been here through 14 months of intensive in home therapy for Zoey, sitting on the floor, watching her learn and grow, and I too learned and grew from the experience, she let me into her world, and let me tell you...her world is full of music and smiles, I look at her and I know she is happy! I got to witness her "go away" and then come back in an amazing way. She has taught me what hope, faith, and love, unconditional love truly mean. 

Ahh, and my beautiful and quick witted, funny  little Anna. She taught me that she too has become stronger and how wise she is, she's an old soul in a 4 year old's body. She has shown me just how much she loves her sister, and I have witnessed their relationship turn from non existent to one of the strongest bonds I have ever seen. She has watched Zoey right along with me these past 14 months and she rejoices every time Zoey does something she has never done before, I hear all the time "Mommy, did you hear her, did you see what she did?" like when Zoey saw Anna walk into the room and Zoey yells "Anna!"  To watch your 4 year old light up after hearing her younger sister say her name for the first time...well nothing on the outside can even compare to that! 

I watch them run and play and laugh all through the house. We may not get out to go to the movies but we have movie nights at our house and I watch my 2 girls sit together and share a snack. I have watched Anna help Zoey and I have watched Zoey learn to interact and have a relationship with her sister. They love each other and it is obvious, and that makes being on the inside not so bad. 

Being on the inside, I have a front row seat to the biggest and best event I've ever seen. 

What is that?  

My children, my husband, and myself have become a closer family, we all love each other unconditionally. That makes being on the inside, not so bad! 

So for now I will be that Mom who watches your moments from the inside wishing I was on the outside. But I will also be that Mom who is grateful for being inside watching my family and our love for one another grow! 

"From the outside looking in, it's hard to understand. From the inside looking out, it's hard to explain!" - Unknown 

Melissa Cote 2015

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