For my LDS autism parents, after receiving many of your emails.
**If you can, try to read through to the end so you aren't left with a sour taste in your mouth.**
This isn't meant to deter anyone from the LDS Church. I love it with all my heart. I broke this down into labels so you can pick what you would like to read.
Being a Convert
I haven't been LDS my whole life. I joined when I was 18. I personally feel being a convert has made me a little less critical against others that don't live my lifestyle. In fact, most of my closest friends aren't LDS at all. I'm not the typical Mormon-ie cultured type girl. I'm not overly bubbly, I'm not a huge fan of boardgames (unless we're talking Zarahemla here), I can't sew, I've tried. Everything comes out crooked and I am constantly saying things I shouldn't (like right now, probably). I'm not a "Playgroup" type mom. A bunch of moms sitting around talking about what they do with their kids, some telling you what YOU should do with your kids. I'm too busy telling my kid to not take her clothes off and stop eating the dirt. Eh, it's just not for me. My friends don't push their lifestyle on me and I don't push mine on theirs. I have found that living my life as a strong, devout LDS woman has been more of an example to them than anything I could have ever said to them.
Getting back on track here...if you are LDS - first and foremost YOU HAVE TO SEPARATE THE PEOPLE IN THE CHURCH FROM THE GOSPEL ITSELF. If you don't learn how to do this, it's only a matter of time before you allow yourself to be offended and you will leave the Church.
The Crap You Might Be Told By A Member
How many of you dread Sacrament? Guessing more than a few of you. Autism parents aren't thinking about the typical things the other parents are. As soon as I sit down in Sacrament my thoughts go a little something like this:
Did I bring enough toys?
Did I bring the right toys?
What if my son has a meltdown because I forgot a certain toy?
Did I bring too many toys? Are they going to fight over them?
I hope my daughter doesn't have a seizure.
I hope I brought enough snacks.
I hope I brought the right snacks.
Where's the exit? Are we close enough if I have to walk out?
What time is it, did we get here too early?
Who is sitting in front of us? Are they going to freak out if my daughter touches them?
Who is sitting behind us? Are they going to be ok with my kids?
She's humming again, is anyone staring at her?
It's no secret that LDS kids are well behaved, well groomed, taught to mind and so on. It's a bit intimidating for some of us with Special Needs kids. There was a ward that we were a part of in Utah. This was when we were just starting to figure out what was going on with our son and daughter. The Relief Society President used to always sit in front of us and at the end of every Sacrament meeting she would tell us about her daughter who has 6 kids and how well behaved they were. How her daughter never had to bring a single Cheerio to Church. Then she would say "Maybe I could have her give you a call." Most of the glares came from her. Some would say my son wasn't Autistic that he just needed discipline. Others would say it's because my kids are too close in age, that's why they're Autistic!
Every Sunday I would go home feeling like less than a perfect LDS mom. I was just learning about Autism. I was trying my hardest to keep my kids managed during Sacrament. Cheerios and Church flip books weren't working for them. Most would stare at us, some would roll their eyes. Every Sunday hurt.
Some will tell you, "No where is perfect, you'll find that behavior anywhere you go." or "I would think living in UT people would be kinder than you would find anywhere else." None of this is true, to be honest. I have a strong Testimony of the organization of Relief Society but sometimes I struggle with the women. My husband said he saw it all the time on his Mission. The Elders would be invited to RS potlucks for dinner and the Elders would sit by themselves and over hear some of the things the women would talk about. Almost always about another member. He said it was no wonder why so many would choose to leave the church. My dad used to make jokes about how you never hear a guy in Priesthood say "Oh my gosh! Did you see Brother Christensen today? I can't believe he wore that tie! What was he thinking?" General Authorities are on record for saying that there are wonderful men that would be great for Leadership callings but will never be called because of their wife. Joseph Smith had to rebuke the women for gossiping and being mean to one another just barely after the first RS was set up. If you go back and look at Paul, he was rebuking the women for being mean to one another. Some of the cruelest things I have ever had done and said to me were by girls/women in the Church. You will find great big hand fulls of AMAZING women in the Church but occasionally that sour apple can leave a bad taste in your mouth.
Self Righteousness Is The Name Of The Game
I had an LDS mom recently tell me "Raising Autistic kids isn't harder or less hard than raising normal kids. It's just different." Most Autism moms on my page addressed her as soon as they saw it. I guess she didn't realize that many of us actually have non-autistic kids so we know what it's like to raise both. It wasn't about trying to make a point of who's lot was harder. It was that she honestly believed that, that she really thought a tantrum was comparable to a seizure. That she had that typical naive mentality that she had been raised with that life was flowers and butterflies. She hated that I was a reminder to be grateful for her own lot because it could be worse.
Recently on my Autism FB page I posted a news clip about a mother that gave her son 3 ounces of coffee a day to help with his ADHD. I was asking my Autism parents what they thought, kind of in a sense like "hey isn't this crazy?" I can understand a mothers willingness to try anything, that is NOT to say that I would. Anyways shortly after posting it, I received an email from a lady I know (that isn't familiar with Autism) that went something like this:
"Ashlie, I saw your post and I just felt prompted to bare my testimony to you about the word of wisdom..." and the email went on and on and on.
Self Righteous? Maybe a little. (The same woman that feels so passionately about the Word Of Wisdom yet debated with me on a separate occasion when I said my family will never eat at Hooters. Strange, I know.) But I replied and told her that I loved the Gospel and that I had no intention of giving my kid coffee.
My Point
I understand what you're going through but it's not a reason to give up on the Church. I don't always make it to Church because of my daughter's seizures. Church is so hard for her between the crowds, the crying babies, her asthma attacks, her sensory issues. I say this to some people and they actually
think that I am giving them an excuse. There's a line of people ready to tell me what I am doing wrong. There always will be. I've come to accept that.
You're going to get those members that feel the need to
"bare their testimony to you" about something you're doing that they
don't agree with. You're going to have people that comment about your
kid. At first glance, Autism isn't as visible as something like Down Syndrome. Therefor it's easier for people to disregard. You have to accept this because you can't change it. Sitting in Sacrament is often a reminder to me that my family is different. Sometimes as I'm escorting my son or daughter with their flailing limbs out of the meeting, I catch myself look up to see if anyone is staring. Something I'm working on. Despite the rude comments that I have heard in the past (and that you email me about regarding your own situations) you have to separate the doctrine from the people. What keeps me active in this church is my belief in the Doctrine we are taught and the Spiritual experiences I have had. Now I bring the activities and snacks to Sacrament that work for MY kids and I care a little less about what others think. If eating a pickle is going to keep my daughter calm, well then you're going to have to deal with the smell of vinegar if you sit in front or behind us =)
This Church, it's my life. My Testimony is engraved on the walls of my heart. I've spent too many nights crying over something that was said, something someones child said to my daughter who's parents stood there and didn't correct them, didn't even blink. At the end of the night, I find comfort in my Savior. I find comfort in knowing that in the end, none of this will matter except for how I handled it. The Church falls away in the end. The only thing that will remain is our family unit. Did you know that? Well now you do =) Don't let anyone deter you from attending church, from reading your scriptures, having FHE, attending the Temple and fulfilling your calling. The Adversary comes in many shapes, sizes and forms. He'll do anything
to tear down your testimony. It's up to you whether or not you let him.
Thank you so much for posting this. For about a year now I have been struggling with my Testimony not because of anything doctrine related but because how I was treated by other women and some of the older generation in our ward. It's always related to my son with autism. I needed to read your words. It has given me the strength I need to focus on what matters the most, attending church and the gospel.
ReplyDeleteI needed this. Thanks for helping me to stay active.
ReplyDeleteLoved this! Thank you for sharing.
ReplyDeletemy heart is so full after reading this. I can't tell you how perfectly timed this was. I was just talking with my husband two nights ago about how I couldn't do it anymore. How I couldn't cope with the hurtful comments that would be made about my parenting because of my daughters autism. I was all together going to start skipping relief society meeting. Until I read this post. I was guided right to it.
ReplyDeleteI am inactive in the LDS church. A large part is my son. When he was a baby we live near my parents. I took my son every Sunday. My husband is not a member. When we moved away it became harder to go without any support and as his behavior progressed and the meltdowns from sensory overload intensified I have just given up. I miss it and I feel sad. He'll be 3 next month and his doctor said a few months ago that he likely has autism. He is seeing a developmental pediatrician in 2 weeks. He is intelligent and loving and thanks to being identified as developmentally delayed pre-diagnosis has been getting therapy and doing well. I wish I could take him but I'll already be judged enough as a woman with a non member husband. People already see my son as a spoiled brat when we bring him in public because he just can't cope. I feel sad.
ReplyDeleteI totally understand exactly what you were saying Ashlie. We had a ward that was horrible in Utah. I guess I should say there were a lot of "sour apples" in that ward. The people that sat next to the chapel doors would not allow the doors to be shut during sacrament meeting. So when we had to take Hallen out we had to take him outside!!! I spent many meetings in the car crying with my son. I think the biggest thing is to help to educate your ward on your child's disability. Our ward in Colorado is amazing. The primary president is even having a special meeting with the primary teachers to talk about the disabled children in our ward and how to best help them and include them. She really wants to focus on how to help the children feel the spirit in class.
ReplyDeleteI have a little bit of advice for Kathleen. Go to church. It will be hard and there will always be people judging you no matter if your situation gets better or worse. Talk with your bishop and the primary president. Educate your ward members and it will help. Will there still be people that judge... of course. But the strength you will get from being there will help you with your son. Even in the ward where I was crying in the car with my son most weeks I received strength from going. We also made a paper that has a little bit about our son and things that will help or hinder him during class. Things that he struggles with and a little bit about Autism. We give this to the primary presidency and his teacher. The ultimate thing is people will judge. At church, at the grocery store, at the park, wherever you go people will judge. I know it is hard and I am so sorry that you have to feel that from other people. I have a cousin that lets me know that my child is autistic because I am a bad mother. I have a close friend in my parent's ward who makes senseless comments about how I could be doing so much better for him, but I need church and it helps my son and the people in my ward need to learn to be tolerant of others and to love all of Gods children regardless. I am so sorry things are so hard right now. Know that you are not alone.
Wow...we must be really lucky...or maybe wards outside of Utah are more tolerant, because I rarely have run into the problem of insensitive comments. Funny looks, yes. I expect that and usually don't worry about that. But people haven't often said insensitive comments to me. Granted, our last ward had other kids with autism, and at one point had at least 5 kids with some variation of autism that attended Primary regularly (one family had several).
ReplyDeleteI think that's one of the biggest reasons I actually kind of like taking my kids to church (outside of the fact that I couldn't face my challenges without the gospel). My oldest is autistic, and my third has severe health problems and very obvious disabilities. My middle child is typical but has picked up some pretty bad habits (fidgety, immature) from her older brother. I've made it my personal mission to show people in the various wards (home wards, wards we visit while traveling) that we do attend church regularly, and our kids aren't perfect, and I don't see that as any reason we shouldn't attend. I've had LOTS of conversations with inactive members and investigators who are intimidated by the other families in the ward, because their kids are simply unused to church or because their kids have special needs. They feel better about their situation because my kids are acting up, too! There might be days where I'm not looking forward to church because the oldest is really wound up that day, but I'll remember so-and-so and wonder "will she come today and bring her kids? I want her to feel she's not alone in this!" and I'll want to go to help her feel confident to keep coming, too. I do end up missing church a lot because of my youngest son's health, but I try my best to make sure it's not a habit! I NEED the blessings too much!
And my kids need to know that church is a familiar environment. My oldest "HATES church!" and refuses baptism (he's ten), but I notice that our persistence is slowly working. Most of his favorite people are ward members. He recently chewed out my brother-in-law for breaking the Sabbath by watching the "wrong" movie, even though my son is constantly asking to do the same thing. He used to think he had "a devil" and would announce it loudly to anyone who would listen at church. CRINGE!! But with time he and I are finding ways to feel comfortable at church. If we need to go outside and decompress between classes, or step out into the lobby for a brushing session, we do it. If my youngest has a seizure and comes out of it retching, and I have to vent his g-tube into a towel out in the lobby, we do it. And if the whole ward watches...good. They learned something. Maybe I've got a chip on my shoulder...but these things are part of my life, and so is church.
Thank you SO much for the reminder to separate the Gospel from the people. That helps me in so many ways!!
p.s. I remember one conversation with a woman who was wandering the hallways all three hours with her new baby. She had six boys rather close together in age. She said, "Some days I wonder why I even come. I haven't sat through a single class for YEARS!!" Later in the conversation we agreed that it doesn't matter if you spend every single Sunday in the foyer with your kids. You will be blessed because you CAME! I know that has proven very true for me.
I really like your blog--it is so needed. My son with high-functioning autism is now 22 and chooses to not attend church (because it's always too hot or too cold!) But when he was young, aspergers and high-functioning autism was just being talked about. The big thing was ADHD, and that is what he was diagnosed with. Everyone with their perfect kids had advice on raising my son. I once had the new primary president pull me aside, tell me how much she loved my son, and go on to tell me that her goal as primary president was reverence in primary. And my son's behavior was hindering her goal. She asked if I had heard of special needs primary, and suggested that my son would be much happier there. Imagine my feelings when I found out that special needs primary wasn't just not in my stake, but was not on Sunday. She was suggesting that I not come back to church, I guess. My testimony teetered precariously at that point. I thankfully confided in my new visiting teacher who gave me some much needed perspective and insider info on this primary president (sounds bad!) that gave me the confidence I needed to walk through the chapel doors the next week. Several years later, my husband and I were called into the bishop's office where the entire bishopbric was waiting for us. It seems that they had held a meeting with all of my son's teachers and leaders without us, and felt that my husband and I should be released from all of our Sunday callings in order that one of us could be with my son at all times. They talked about his "violent behavior" which was a shock to me. (The only example they had was of him tipping over a chair as he stormed out of the primary room once.) He was in a special program at school where they separated the physical kids from the non-physical kids. My son was in the non-physical class, and I was often told how kind and thoughtful he was (a rarity in the autism world, I was told.) They talked about being worried about a lawsuit. (What???) But they had already held the "court" and had their decision, and there was no arguing with them. My husband and I were speechless. The problem was that my son refused to have one of us with him. He refused to go to class if we were with him. I cried for 2 weeks straight over that one, and thought seriously about not returning to church. But I knew it was not the right decision, and after praying was "reminded" that church was not an eternal principle, but love and family were. He was 11 at the time, and so we started taking him to sacrament meeting and then taking him home. After a few years, he stopped coming to church altogether. I did my best to teach him the gospel at home, but he had a hard time accepting that his lego guy "All-star" was not the supreme being in the universe. These are not the only examples we lived through, but are the major ones. I envy the young mothers today with autistic children. It is now prevalent. There are schools, books, resources, and helps on the LDS website. I never had one other person to talk with. Even his school teachers didn't know much back then. I only had my prayers to see me through, and the answer I received over and over was to just love him. I learned to trust my instincts and do what I felt was right. Over the years, I've found that my instincts were right. Trust yours.
ReplyDeleteLet it all go. Let it all go. Let it all go.
ReplyDelete