One Sunday morning last year, I got up feeling adventurous. (My husband had been in an Infantry unit in Afghanistan since January, and our daughter was just diagnosed PDD-NOS/Autism Spectrum Disorder in February, after being born during my husband’s last deployment with a chromosome deletion and many medical issues, developmental delay, etc.)
I thought it seemed like as good a day as any to try to take her to church. We had brought her every Sunday from the time she was born, even through the toughest times of her congestive heart failure and feeding tube days, until one day about 18 months ago - she began screaming the moment we walked into the building. I tried for 20 minutes to calm her not understanding what the problem was, etc., thinking it was a mood rather than anything else and she would eventually be alright to sit for mass.
It never happened.
Scores of dirty looks, impatient parishioners waiting for me to just give up and walk out. And I did. The beauty of that moment was that it prompted one of the active members of the parish to begin a dialogue of inclusion for special needs. Great! – Except that the accommodations the church made to make mass more accessible for kids and adults like my daughter weren’t going to help us if we still couldn’t get through the front door with her. And after a few subsequent attempts it seemed that we were never getting her IN the building again no matter what changes were made inside to accommodate her needs. The church set up a small, quiet room to simulcast mass through TV for those that were sensory sensitive like my daughter. Yet, we have still not made it to that room. So that brings us to that Sunday when I felt energetic and enthusiastic enough to try again.
Well, we made it through the parking lot to the door. THAT was an accomplishment. But when we got there and I motioned to go inside, my 4 year old just imploded. And it was heartbreaking. I could feel her discomfort at the very thought of just setting foot inside the door. Fifteen minutes of her screaming in tears outside the door, with me sitting calmly on the ground in front of the door patiently waiting. Dozens of people had come and entered the church. Most looked the other way as to save me from the embarrassment of their glare and some even felt compelled to comment. “Well that’s a toddler for you.” Or worse, “Been there.”
No. You haven’t been there.
I wasn’t giving up. So after a few more minutes – after the screaming had stopped – I slowly stood up and made my way through the glass doors asking her to join me (and her brother who was already inside with my parents). Even as she protested, I slowly stepped inside the door. Now there we were - her on the outside, me on the inside. I sat down on the carpet inside the door and opened her backpack as she watched me through the glass. I slowly and carefully pulled her favorite toys from the backpack and laid them out for her to see. I signed to her to come in and play. She cried.
As this was continuing, more parishioners would come and enter the door, give me a brief look of contempt as to why I was teasing my poor child on the outside of the glass – all alone – I didn’t care, I kept trying. There was one young father with a 1-year-old baby boy who took the time to ask me if there was anything he could do to help. I explained to him that she is autistic and has sensory issues and therefore had much trouble with the idea of coming inside the doors. So he sweetly dangled his baby boy in front of the glass like a prize for my daughter if she would just come in. I truly appreciated this father’s innocent attempt to help. He asked questions. He had compassion. It made the lengthy stalemate pass by just a little more swiftly.
I never did get her inside the door. But what I did accomplish in almost 90 minutes of trying was just a little more comfort than we had before. She tolerated me on the other side of that glass door for more than an hour. A couple of times near the end of our time there she did approach the door and even open it a peek. And though small a victory it was, I did feel victorious. I felt victorious the moment we stepped out of my truck and she took my hand just to walk up to the building. Everything she accomplished beyond that was pure gravy. And she DID accomplish a lot. She made it TO THE DOOR. Maybe next time she will step inside, even for a second or two. And I will keep trying.
That’s why we do it. She will sit in mass once again someday. We will join together as a family in a ritual that is of importance to us and it will be worth every hour spent staring through those glass doors cheering her on to come a little closer. I have to. I don’t know any other way than to just keep fighting the fight and keep pushing forward. It’s worth every dirty look, worth every ignorant comment. And I will continue to speak up and say, “My daughter has autism, and we made it all the way to the door today!!! I am PROUD!!!” Just as I said last Sunday to everyone who passed by us.
We do what we do because we just love our kids.
Comments
Julie
Beautiful story! Keep fighting the fight.
CircleTimeMommy
Wonderful story! Way to be a fighter for your child, not out of stubbornness or “perfectionism” as someone recently labeled my hard work for my child, but out of love for your child. She will get there one day!
Alicia Hart
Just an odd thought…my son on the spectrum has had multiple surgeries and dental work and sometimes, out of nowhere, he says it smells like anesthesia and kind of freaks out and MUST leave. Like I said, just a thought but I know for kids who’ve been through the ringer in the hospitals it’s something to think about. Good luck, I hope you find a way inside!
@MrsSGMKenyon
Alicia, I never would have thought of that one! RM has had many, many trips to the OR.
Hmmm….
Thanks for sharing!
Alicia Hart
I wouldn’t have thought of it either but Ewan has told me SO many times that it smells like anesthesia that it just struck me that it might be a factor in a kiddo that has been in the hospital so much. Sometimes I also think he means the smell of antiseptic, alcohol wipes, or just that really odd ‘clean’ smell that you find in hospitals. Also, I know in a lot of pediatric hospitals they ‘flavor’ the gas and that has been a factor too! Good luck!
caryl
Wonderful, keep up the fight. I too was wondering abour smells or allergies. Maybe going there triggers a memory.
Marcy
As Alicia mentioned, perhaps the “smells” are over stimulating? The incense and such can really have an effect. I find even if incense isn’t used in that particular Mass if there was a funeral previously or church was closed up it seems the odors “come at you.”
Good luck!
Lori
You are not alone! We fight this battle weekly, as church sends my SPD 4-year-old son scrambling under seats and screeching that the music is too loud, the lights are too bright, and the people are too close. Getting in the door is a battle, getting to the pew is another, and getting through the service without dirty looks from others who don’t understand why a child that “old” can’t sit still and listen is an unusual Sunday! Just keep trying, keep making those HUGE ‘little’ steps forward, and remember there are more of us doing exactly the same thing!
Heather Finnegan
Good for you to keep fighting for her. Every step is a victory!
Peach
We’ve been dealing with the same thing and it was an inspiration to read your post…thank you!
Suzanne
Congrats on such a big step. Your so lucky to have an accepting church. Ours is not so accommodating so every weekend I have a screaming little boy in a large echoing foyer
Outside the church.
Emily
It’s so wonderful to read a story about such a compassionate and determined parent. I don’t have a child on the spectrum, but I am an ABA therapy provider. I was just wondering if you had thought about video modeling? Making a video of the process of going to mass and having her watch it in the comfort of home (make it very reinforcing) over and over. Research shows that it doesn’t matter who does the modeling (child or adult) that both ways are affective or you can film it from her perspective. Just a thought! What you are doing is great! Stick to it!