I wanted this post to be about our day to day activities and all the work that Fenix is continuously doing. But something happened a few weeks that I am still very upset about and honestly still processing. Ironically, it was the catalyst that made me want to start the blog, to educate people that know nothing about life on the spectrum.
I have looked forward to VBS (Vacation Bible School- it is during summer and is at most churches. It is a super fun way for kids to learn about the bible) since Fenix was a baby. A lot of my friends had older kids and everything about it sounded amazing. This summer, Fenix is finally old enough to participate! He loves school and church so much and I knew he would absolutely love going to VBS.
A friend told me about a church around the corner from where we live and the dates of their VBS. Fenix has summer school until 7/10 and with it being so close to home and starting after summer school ended, it was a perfect fit. I went by myself to the office to sign him up.
We have been attending our church for years and after Fenix was diagnosed, I did not inform his Sunday school class because honestly, unless you are familiar with autism, you would not know Fenix has it. There have never been any issues at church or school so I felt like, unless an issue were to come up, I do not need to inform them.
When I got to the church office, I filled out an information card and there was an area for medical/comments about your child. I debated whether or not to tell them about Fenix. I decided to write, my son has autism, mainly so that if needed, they would be just a little more patient with him. Once the secretary at the desk saw that, she immediately said that I need to talk to the pastor about Fenix. Once she said that, my cheeks got hot and I started panicking, trying to fight back the tears because I knew this wasn't going to end well. I had a really bad feeling about it.
The pastor came in and basically told me that, they are not equipped to deal with any special needs he has and they don't have extra people to help him. He seemed very uncomfortable and never asked me any questions about my son or how can they help to make this a good experience. I tried to tell him that he is very high functioning, is on the mild end of the spectrum and that he does not need an aid but at that point, I did not feel welcomed. Without him saying it, I knew that they did not want him there. I am a pretty receptive person and I know he was not going to flat out say, he should not attend but actions speak louder than words. I left the office quickly and got into my car and started crying. I called Matt to tell him what happened and he was furious to say the least.
That was my first experience telling a church about our son and that was the reaction I got. It was also my first time feeling discriminated because of my son's diagnosis. I cried hard and for a long time. That interaction released a flood of emotions and questions. This won't be the first time I have to go through something like this. I can toughen up and handle it in the future but there will come a day that I am not there and Fenix will have to go through it by himself.
Then my feelings of sadness turned to anger. My son has every right to be there. Also, with statistics like 1 out of every 68 children, the church should probably look into getting the proper support kids on the spectrum need. Fenix is on the mild end of the spectrum and would not need additional support but what about the other kids on the moderate to severe end. They deserve to be there and to learn about the bible just like everyone else.
My child is not a burden. But that church definitely made him seem like one. They did not take a single moment to ask any questions about my son. They immediately jumped to conclusions, which were they were not equipped to "deal" with Fenix. They never gave him a chance.
It also made me realize that they know nothing about autism. Or perhaps the only experience they may have had is with one or two kids that may or may not be severe. That is not my son. Fenix is completely and 100% unique. Yes he does have some struggles but don't we all? Regardless of what challenges or needs a child has, they should be able to attend any event at a church without feeling like some sort of inconvenience.
If they had asked me to tell them about Fenix, I would have said,
"He loves to learn. About everything and anything. He can name all the planets, he can speak some Russian words, he knows every car model out there, he has hundreds of sight words, he loves geography and can name the corresponding flag to dozens of countries. He says his prayers before eating and at bedtime and always end them with, I love you Jesus. He is sweet, kind, he gives the best hugs and kisses and is becoming more and more adventurous."
But they didn't ask me about my beautiful and smart son. Instead, they heard the word autism and closed the door on having the privilege of meeting our incredible boy. I say that because you better believe that we will not be taking him there for VBS.
They may not have been aware of the impact of their actions but that is the whole point of me coming forward and talking about autism. To bring awareness to people that know little or nothing about it.
This time, Fenix was blissfully unaware of what happened and for that I am thankful. I can only hope and pray that in the future, people will be more accepting and understanding of each other's differences. In the mean time, I have to try my best to build up his confidence and assure him that he is fearfully and wonderfully made. that he was made in His image, and that God has a plan and a purpose for him.
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