I need you. WE need you.
You see, you are not only my family- you are my lifeline. My son has High Functioning Autism Spectrum Disorder- a mouthful, I know.
He is sweet. He is funny. He is borderline brilliant. He is not yet 3 1/2- yet he can read you his children's Bible, start to finish, unassisted. He can write "xylophone" and "mother" and "queen" and any other word you throw at him- ambidextrously and in better handwriting than my 8 year-old.
He is sweet. He is funny. He is borderline brilliant. He is not yet 3 1/2- yet he can read you his children's Bible, start to finish, unassisted. He can write "xylophone" and "mother" and "queen" and any other word you throw at him- ambidextrously and in better handwriting than my 8 year-old.
He does not, however, call me "Mommy." He does not understand potty training and is still in pull ups. He won't eat the goldfish crackers you offer at snack time, because, well- who knows why. Because his quirks and sensory sensitivities extend to his eating habits.
I know he shakes your expectations a little- if I wasn't his mother I would probably be a little confused by him as well. But his hand flaps, excited vocalizations, and food preferences aren't any extra work, really. To paraphrase Temple Grandin- he is most definitely different, not less.
I know he shakes your expectations a little- if I wasn't his mother I would probably be a little confused by him as well. But his hand flaps, excited vocalizations, and food preferences aren't any extra work, really. To paraphrase Temple Grandin- he is most definitely different, not less.
I knew that as he got older and moved past toddlerhood his differences from his peers would become more obvious. I knew there would be challenges. I did not know it would feel this isolating. Every day I'm faced with it. Cashiers- even pediatricians- who don't quite get it. Looks from other parents- increasingly, even other kids. My skin is getting thicker by the day. But sometimes, I need to not be alone. Sometimes I need to be surrounded by a family that gets it. That stands by me and embraces the challenge. That- for an hour on a Wednesday night or Sunday morning stands by me, sees past my son's differences to his amazing strengths, and says "we've got this- you're not alone."
Promotion Sunday was last week at church- which means my son went from the quasi-nursery setting of the 2 year-old class to the "big kid" 3 year-old class. I was nervous.
Working with my son for an hour doesn't take extra work- just empathy and understanding. I don't expect him to participate in group activities- he would be thrilled to be handed a book and allowed to read for the hour I'm gone. Unfortunately, when I picked him up the relief on one of the teacher's faces was palpable. I came home to a very kindly written email from the children's minister saying that it is church policy not to let kids advance until they are potty trained. Totally unrelated, as he was dry when I dropped him off and didn't require a pull-up change. To be honest, in most situations, the policy is completely understandable. I get it- but special needs kids aren't babies. He will most likely NOT be potty trained soon. But he doesn't belong in the nursery, either. I don't think I've ever really understood the importance of the phrase "differently abled" until now.
He needs more than me in life- he needs his church family as much as I do. He needs to be loved and embraced- not shoved in the nursery for perpetuity. We both need you, our brothers and sisters in Christ. He needs your high fives, smiles, and cuddles. I need your prayers, conversation, and company for an hour or so on Wednesdays and Sundays. I'm not alone in this- the numbers of kids on the spectrum are staggering and a quick Google search tells me I'm experiencing a very common situation.
I stayed home from church today. I didn't want to, but my husband wasn't feeling well and to be honest, I was a little overwhelmed by the thought of sitting through church with my son by myself because I'm not ok relegating him to the nursery. I'm sure this is the first of many situations involving my son that I'm not quite sure how to handle. But I know I need you. My family needs you. My son needs you. Families like ours need you- our church families. We need your support, your love, and your attempts at understanding. We need you to stand by us, accept us, and embrace us. More than that, our kids do.
Indispensible
Autism and Your Church
Speaking4Sam
Four Practical Ways to Welcome Autism into Your Church
Autism and the Church
Autism in Church
The Inclusive Church
Is Your Church Open to Autism?
Indispensible
Autism and Your Church
Speaking4Sam
Four Practical Ways to Welcome Autism into Your Church
Autism and the Church
Autism in Church
The Inclusive Church
Is Your Church Open to Autism?
Perfect, and needed. I recently read another post by a special needs mom talking about how the church is failing people - stating that about 80% or more of special needs families don't attend church. So sad, and I've experienced this myself as a special needs (Autism) parent. Will be sharing this. Found you on lovethatmax.com!
ReplyDeleteThanks for sharing- I love lovethatmax.com, don't you?
DeleteI certainly wish my church was better prepared for embracing special needs kids. I don't feel that there is any malice intended on their part or that the lack of preparedness for special needs kids is intentionally cold-hearted, but at the same time what an opportunity for ministry they are missing out on- both for kids and their families- by not actively embracing such a huge part of their congregation and community. I wrote this and I still choke up when I re-read it, because I'm not sure how to whittle a place in the children's ministry for our family. Hopefully my experience, and the experience of other families like mine, will help to bring this all too common situation to light for churches out there and open doors for others.
Yes we do need the church and all too often the church fails us. We were having the same problem except our daughter was 10 and still being relegated to the nursery! My husband and I started a special needs Sunday School class hoping to establish a place for her but the only other special needs people attending are elderly. Our daughter wants friends her age. I finally decided to just stay home with her. She and I have not been to church in about 6 years now.
ReplyDeleteI'm so sorry to hear that. Church families have the opportunity to play such an important, wonderful role in our lives- feeling somewhat shunned is disheartening and lonely. I hope that you and your daughter are able to find a church home that welcomes you. I was heartened by an experience I had just yesterday- I attended a a workshop hosted by the Autism Society of East Tennessee in Knoxville yesterday. It was held at a church with what appears to be an amazingly active special needs program- preschool, Sunday School, even a summer program. Two lovely ladies from the church provided childcare during the workshop, and I have to say I almost cried tears of joy as I walked away after dropping my son off with them. They didn't have that deer-in-the-headlights look, just kindness as they asked me what they needed to know about my special son. There are churches out there that care and reach out to care for even the smallest special-needs kids in their flock. Even if my church isn't there yet, it warmed my heart and gave me hope to know that there are churches out there that are actively reaching out and filling this need.
DeleteThat's awesome! I'll bet you did have tears of joy! We are in the process of getting ready to move to a larger college town and I'm hoping we'll find a church that we can all go to! Thanks for linking up at Friendship Friday! I appreciate the support!
DeleteSo glad I found your blog. This is definitely an area where the church often struggles. Our family is loved and accepted but I know that's the exception.
ReplyDeleteI'm so glad you've been embraced! :-) It makes me extremely happy to hear that you have a church family that embraces you and your family's special needs. I'm glad you found my blog too!!
DeleteHoping things get easier. You need your church family, and just as much, your church family needs you AND your son. When our son transitioned out of the nursery, we were able to set up a buddy to accompany him to class. That way the buddy can help him play quietly with toys if he can't sit still or is babbling too much, and the buddy helps him interact with the other kids. I think it helps the teacher, too, because sometimes a whole class of preschoolers is daunting, and it helps her to know my son will have one-on-one help while she facilitates the whole class. They have my cell phone number and can text me if he needs a diaper change. I also loved this article by Greg Lucas about special needs kids and the church: http://specialneedsparenting.net/indispensable-autism/
ReplyDeleteThank you so much for your kind thoughts and response- it is much appreciated. Our attempts at having him stay with us through the service this past Sunday were less than successful...I'm cautiously hopeful, though, that things may be moving in the right direction at church after a conversation with our children's minister. What a lovely article you shared, thank you! I enjoyed reading it immensely :-)
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