Last Updated on July 23, 2012
Three years ago one of my favorite days of the week was Sunday. As a people person, Sundays at church were fabulous. I loved catching up with friends and learning more about God’s Word. Each week was like a family reunion without the mysterious casseroles and awkward “Who are you and how are we related?” moments.
But now I dread Sunday mornings. I have a hard time getting up (okay, I always have a hard time getting up, but it goes deeper). I get stomachaches Saturday nights, and I fight to get to church at all, much less get there on time. Why is that? Because it’s so hard!
Rachel is my beautiful, wonderful child, but her autism makes life challenging. She’s on a very specific diet and many foods are potentially harmful—including most common snack foods. She is nonverbal and doesn’t comprehend language well, so she has difficulty following directions. She needs one-on-one attention to participate in most social environments. And church, with its snack-filled, chaotic, and loud menagerie of fun, doesn’t always work. Or I should say, we don’t fit that mold.
I’d decided the best solution was to teach Rachel’s Sunday school class so the rest of my family could attend. Now I’m not so sure that was a great idea. In the last six months I’ve sat in a church service maybe three or four times, and I’m worn out. Plus, I’m carrying too much load trying to teach and maintain Rachel. I can’t do it anymore, and I know I’m not alone.
Many of my friends with special needs children have said the same things. One had to take over as nursery director and teach her son’s class just so her family could attend church. Another said when her son was younger she often got called out of church within 15 minutes. Another who goes to a church with special needs partners still has to stay with her son if the assigned aide can’t be there. It’s exhausting! Yes, the few times we’ve gotten to sit and listen to a sermon are wonderful, but not enough. Most of the time I’d rather my husband and other daughter would go alone and leave Rachel and me at home—something I never imagined saying. It’s that hard.
Church functions aren’t much easier. Babysitters are hard to come by and forget bringing the kids along, at least for us. The few times we tried that ended in disaster.
A solution? I’m not sure. I almost didn’t write this, but I want other moms to know they are not alone. Yes, life with autism or other special needs is hard, but God is with us. Furthermore, I believe He has a special place in His heart for our special kids. Don’t give up on good things like church just because they’re hard. Pray, then trust in God to work things out. He’s so big and His love is so great you’ll be amazed what He can do.
Even as I typed this, someone from my church called me to see how we can make things better for Rachel. Isn’t that awesome? So, please, never forget: God is with you. You are not alone.
Jennifer Dyer has an M.S. in Communications Disorders, which served her well in her professional career as a speech-language pathologist. Never did she imagine that her education and career were God’s way of preparing her to be a mom to her own daughter with autism. Today, she enjoys reaching out to other families who face similar diagnoses. As a cancer survivor, carpet-cleaning veteran, and originator of the “Messy House Ministry,” Jennifer feels blessed to share joy, peace, and humor with others facing life’s challenges. She is mom to two beautiful daughters and is thankful to be raising them, serving other families with unique needs, and using her gift of writing and speaking to minister to others. Jennifer is also the author of a youth fiction book series and is trusting God with His timing on publication. Jennifer has been a mom for 11 years. She and Brandon have been married for 13 years.
Dear Jenn, Just wanted to send a short note of encouragement to you regarding your special child. I am a special needs partner in a one-on-one situation. Tori (not her real name) is a wonderful little girl that has "18g syndrome". Basically she has the vocabulary of a 1 1/2 year old, however she does understand everything that is going on around her and you can communicate with her. She is also very flexible – she is able to sit on the floor or in her stroller and put her legs up beside her head (which she and everyone around her thinks is very funny). She has limited walking ability with braces that go from her ankle to her knee and she uses a walker during the week to get around and at church she sits in her stroller or on the floor. She can scoot on her bottom at the speed of light and can get across the room before I can catch up with her. Tori does have great limitations but she is also a great blessing to those who are around her.
I do want you to know that on those rare Sunday's when she and her family do make it to church – it is special. I know that they struggle to get to church on time and usually are the last ones to arrive. The parents are tired, but putting on a good face for the kids and i know that all they would like to do is just sit quietly and have a cup of coffee and doze. I can't imagine what it must be like to live with a child of special needs, however, I feel that Tori and I have bonded and are able to share some quality time. Her parents did not want to attend church for such a long time, because they felt that Tori was a burden on the child care workers. NOT SO—when Tori is in worship (singing) I know and feel God's presence. She claps and kicks her legs to the music and certain songs she has even memorized the sign language. She is a blessing and i feel truly blessed when she attends church. It does take a special person to be a parent of a special needs child and it also takes someone with understanding and appreciation to be a partner. I make not get it anywhere close to right during the week – but when Tori is at church and we are singing – I feel God is smiling.
Please know that God has called some of us to help with these special children and we love the opportunity to love on you and your family. We hope that you know we are there to give you a much deserved break and hope you will take the opportunity to worship, doze at the coffee shop or just catch up on family business. Much love and prayers for all parents of special needs kids.
Wow, what a great testimony to God's provision. Thanks for sharing this with us and for your heart to care for special needs kids.
I'd like to encourage parents that they are not alone. There are people who want to help. We, as parents of special needs kids, need to be vulnerable enough to ask others for that help. It doesn't always come right when we ask, but keep trying.
To the above commenter–do you have a twin? 🙂
Your entry has really encouraged me to step up with my experience. I worked for 4 years in a home with 8 autistic men. We tried to take them to a little church not far from the group home every Sunday. In fact, when I was supervisor, I required it unless they were sick. I know it's trying and sometimes embarassing. And you don't get to pay much attention to the sermon when you're trying to quell the signs for a drink or a treat (that's all these guys really cared about). But, when those guys were having a good time at church you could tell that God really was giving you a gift for being so faithful. I think because you've inspired me, I'm going to begin volunteering in our church's special needs room. I had never thought of it before. Thank you.
Thanks for sharing so candidly. I am encouraged that you would have such a positive response. God's people are so great!
Our church has been supportive, but I think much of my problem is the difficulty factor. It's easy to shy away from something hard, you know? God continues to encourage me, and I hope He will use me to encourage other moms who might not have such a supportive environment.
Thanks for making your corner of the world a better place.
Dear Jenn, Thank you so much sharing your story! My heart really goes out to you. We are in a similar situation, but our daughter Rebecca has Aspergers along with a severe delay in language development and an auditory processing disorder. My daughter does fine these days in most situations, including working independently in a mainstream classroom at a public school. However, with all of the bright colors and fast paced, verbally-oriented activities, Sunday school pushes her into a meltdown. The more we, as parents of special-needs children, pray about this and share our concerns, I truly believe that churches will start making adjustments to their curriculum (more visuals, more motor movement activities for learning purposes) and settings (cheerful but calm) to make accommodations for our children and other children with learning disabilities. Most schools have already made such changes and have found that these changes benefit all children. In the meantime, I will pray that you will find a compassionate person to assist Rachel at church. Please keep sharing your story! I am looking forward to the day when both of our families, including Rachel and Rebecca, will peacefully (okay almost peacefully) enjoy church!
Laura,
Thanks for sharing your story! It's so great to know we aren't alone. I loved your concrete examples of how to make changes. It made me think. Parents of special needs kids should be discussing this more often. Just from your paragraph, I have some more ideas to take back to my church.
Thanks!