Learn From My Mistake

Ok so I was going to write about the sensory integration piece of Autism in this Blog but something happened yesterday that I feel needs to be addressed. I am hoping you can learn from my mistake and you can take the necessary steps to avoid feeling like I did yesterday.

So it is Easter Morning and it takes me 2 hours to get everyone fed well, dressed (nicely) hair done, shoes on and out the door for church. Since I was a child I have only missed one Christmas service and only a handful of Easter services in my life. Getting the kids out the door every other Sunday I have to admit is pretty hard for us and doesn’t always happen but I always try to go on Christmas and Easter. Not that I don’t pray and love God the other 363 days of the year but you know what I mean. So we go to church at a very large church near us that we have visited in the past. They have a great children’s ministry and my 8 year old son loves going there. When we went to drop Julie off at the childcare area I mentioned multiply times to the woman that was taking her into the room that Julie had Autism. That she has the tendency to wander off and needs a close eye. I remember looking at her in the eyes when I said it to make sure she knew what I meant and felt comfortable leaving her there with the woman’s nod and reassurance. So we got our ticket with a number on it that they call if there is a problem and we went to church. It was a lovely service and we were thinking that even though the effort was great that we really need to come more often. When church was over we went to collect the kids. My parents were with us and they said they would go pick up my son Johnny and I was going to go get the girls with my husband. When we got to the room where there girls were supposed to be my daughter Jadyn was there and happy to greet us but when I asked where Julie was and they looked around the room and they couldn’t find her. I asked Jadyn “where is your sister” and again the response was I don’t know “Julie where are you?” I went into the classroom and was told they went to a different part of the church with the kids and they were going to see if she was still in that room. Still… no Julie. I started seeing panic in their eyes and my heart started racing and I began wondering where is my daughter? I then told my husband who was waiting in the hall that they couldn’t find Julie. At that point the staff at the church was on their Walkie Talkies stationing people at all of the exits and my husband was going room by room checking….. My heart was breaking inside my chest. I felt like I had 1000 butterflies that all weighed 1000 pounds on my insides. My mind in a nano second let in the what if’s and the only thing I could think was I can never leave this church because I came here with Julie and I can’t leave here without her. The fear was so great that I could hardly see and I started having a panic attack. I then thought I would be no help if I panicked and snapped back and started asking questions. Where are there dinosaurs? Where are there sea creatures or animals? Julie would try and find something like that. All I got was a blank stare of fear from the woman I was asking and she managed out that Julie was playing with the dinosaurs in the corner earlier. My Dad came in and I asked him to watch Jadyn for me so I could begin searching. As I left the room I looked down the hall at another class room and decided to start my search there. As I approached the room a woman came out and said SHE IS IN HERE! I ran to the room and held her tighter that I have ever held anyone. The people around me were talking and asking questions. I can’t tell you a word that they said. I mumbled off something and scooped her up, called my husband to tell him she was found. Went and got my other daughter and son and left.

A day later still fresh in my mind I am not able to eat my lunch today with the remaining butterflies that have taken residence in my stomach and heart. I am thinking how could things have been different how can I help make sure I NEVER have that feeling again. Julie along with most kids on the spectrum do not seek social engagement. Hence the fact they have Autism. She seeks out objects. She seeks out safe places and comfortable places. She is a flight risk. I had bought her an id bracelet that had her information on it what meds she takes that she had Autism and that she was a flight risk but that morning it never got on her arm.

So what should I have done? Here is what I will be doing in the future.
Her bracelet will be on her at all times.
I will call ahead to a place where someone will be watching my child to let them be aware of her special needs and accommodations I will need for her.
I will no longer assume that just because I said she had Autism and was a flight risk that I will be listened to.
I will talk with Julie before we go to tell her what is expected. That she needs to stay and I will use social stories if need be.


Here are some other things we did early on when we found out Julie had Autism that you may want to consider.
I called the police and gave them a description of Julie so there were aware that there was a child in this house with Autism and what she looked like.
I have bar locks on all of my doors that she can’t reach and also have a chime on the door so when a door is opened I will know it.
I am constantly working with her to learn her name and her families names.

So you know the church called and apologized and said that something like this had never happened before. That the people in the room with Julie were so sick about what had happened that they didn’t even know if they would ever volunteer again. To be honest I am not angry at the volunteers at that church. I know their hearts are in the right place but I did say that training to staff needed to be done about kids with special needs. They said they have started a buddy program for kids with special needs but it was set up for people who call ahead and make the arrangement. I said that was a good start but that some things need to be in place for the time that a family drops in. I gave her the name of the book “What every Child with Autism wishes you knew” and offered myself as a resource if they had any questions about Autism.

So bottom line is I never want to feel that loss in my heart again and I never want anyone reading this to ever have that feeling as well. Take the steps to ensure your child is safe and is in a safe environment. Call ahead, and let them be aware you are coming. Have an ID bracelet on your child if they have communication issues and are a flight risk. God has given me 3 very special children. It is my responsibility to make sure I keep them safe.

Blessings,
Janelle