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When You Feel Like an Outsider and an Insider as a Special Needs Mom

I’m a mom to two little girls. My oldest, Anna, is 4. She’s just as funny and loud and precocious as any 4-year-old can be. My other daughter, Zoey, is 3 years old. She was diagnosed at 21 months old 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 Facebook, 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-year-old and a 3-year-old, you have be quick and ready for anything. Zoey’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 and even family gatherings can trigger a meltdown. We’ve learned through trial and error what works and what doesn’t work.

My daughter is impulsive and doesn’t understand the dangers of streets, strangers, bodies of water, fire pits and big, barking dogs who may or may not be good with small children. She can’t tell me or anyone else if something’s wrong or if she’s hurt.

I see families apple picking, hiking, biking, taking trips to the circus, going to soccer games and birthday parties, and going to the movies as a family. I would love for the four of us to go out to a movie, but that’s not our life right now.

I watch all this 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 inside my home, hoping and wishing that someday I won’t be 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.

So 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’ve been here through 14 months of intensive in home therapy for Zoey, sitting on the floor, watching her learn and grow, and I learned and grew from the experience as well. 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’s 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.

I’ve watched my beautiful and quick-witted Anna become stronger and wiser. She’s an old soul in a 4-year-old’s body. She’s shown me just how much she loves her sister, and I have witnessed their relationship turn from nonexistent to one of the strongest bonds I’ve ever seen. 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 to go to the movies, but we have movie nights at our house, and I watch my two girls sit together and share a snack. I’ve watched Anna help Zoey, and I’ve watched Zoey learn to interact and have a relationship with her sister. They love each other, 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: My children, my husband and I 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 watching 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.

Follow this journey on Life of Zoey.