Modifications. They are a necessary and natural part of life for families who want their loved ones with special needs to have access to the world. One of my earliest memories is watching carpenters build a ramp so Dad could wheel in and out of our house. Mom modified an old leather toiletry bag to carry Dad’s urinal when we were out and about since few bathrooms were wheelchair accessible in the 1960s. (Note: Do not try this at home. Leather absorbs urine odor, and it never goes away.)
Modifications at Our House
My husband and I continued the practice after we became parents. Before our baby was released from NICU, Hiram modified the crib, elevating the head to reduce reflux in our tiny boy’s esophagus. On vacations, we wedged suitcases between motel mattress and box springs for the same purpose. For years I carried a hand crank baby food grinder–strong enough to grind hamburgers and pizza–in my purse when we ate out. And because our little boy’s misshaped esophagus caused him to throw up about half of what he ate, we also left really big tips for the wait staff…to make up for the napkins full of spit up food we left behind.
You know what I’m talking about because as a special needs parent, you are constantly modifying the world around your children, too. To us, it’s natural and necessary. But convincing others to join us in making the world accessible to all isn’t an easy task, a fact proven by recent history.
Modifications at School
In fact, convincing schools to modify education for children with special needs required an act of Congress. In 1975, federal lawmakers enacted Public Law 94-142. The law said that children with disabilities “have a right to education” and established “a process by which state and local educational agencies may beheld accountable for providing educational services for all handicapped children.”
As a college freshman–and an education major–the year that law passed, I had a front row seat as our college scrambled to create classes to educate a new crop of special education teachers and schools scrambled to comply with the mandate. The law wasn’t perfect, and schools didn’t implemented the law perfectly. But schools slowly modified physical buildings, teaching strategies, and levels of education to meet the needs of all students. Today, such modifications are accepted practice and expected practice.
Modifications at Work
Public Law 94-142 granted kids with special needs access to education, but much of the world remained off limits when they became adults. Federal law stepped in again in 1990 with the American with Disabilities Act. Among other things, this law requires employers to make modifications for “A qualified employee or applicant with a disability is an individual who, with or without reasonable accommodation, can perform the essential functions of the job in question.”
Modifications in Sports
But even that law wasn’t enough to grant people with special needs access to the whole world, as a recent statement by the US Education Department Office for Civil Rights recognized. This past January, the office “released guidance that clarifies existing legal obligations of schools to provide students with disabilities an equal opportunity to participate alongside their peers in after-school athletics and clubs.” For more detailed discussion of the topic, go to We Must Provide Equal Opportunity in Sports to Students with Disabilities or listen to the radio broadcast Opening School Sports To Kids With Disabilities.
The education department’s action lacks the clout of federal law, but it’s a beginning. It’s a starting place where, depending on a child’s disability and the activity in question, modifications may open the wide world of sports to more kids with special needs.
Modifications at Church
Now that better access to schools, workplaces, and sports exists, we can rest easy, right?
Wrong.
Because more often than not, our churches aren’t accessible to children and adults with special needs. Even though Jesus’ invitation in Matthew 19, “Let the little children come to me and do not hinder them,” had no qualifications, many churches welcome only those who can climb the stairs, sit quietly, follow directions, and display socially appropriate behaviors.
Because our government believes in separation of church and state (a very good thing) lawmakers can’t pass laws to require churches to make modifications for our kids. Care giving demands and medical emergencies often prevent parents and family members from advocating for special needs programs in our own churches. Even so we have power far greater than federal law to persuade the body of Christ to obey Jesus’ command. We have the power of the Holy Spirit working in us and in all God’s people to right this wrong.
Through the Spirit’s power,
We can pray God’s word back to Him, asking Him to accomplish Jesus’ command in the lives of our children.
We can ask God to open the eyes of His people to the needs of all children.
We can ask God to lead us to a church family where our children are welcome.
We can ask God to humble our hearts so we will admit we need help.
We can expect God to make a way when there is no way.
Of all the modifications we can implement for our children, modifying our hearts for the purpose of prayer is the most important one we will ever make.
Why?
Because in Spirit-led prayer, we have access to the Father through His Son. The Son who modified his existence to grant us hope for this world and the next.
Lord God, grant our precious children the opportunity to learn about you and worship you as part of a welcoming church family. Because your Son commands us to bring all children to him, I trust you to make an eternal way for every child with special needs when there seems to be no way. Amen.
photo credit: www.freedigitalphotos.net
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Such an awesome article. I agree that people should treat the special children as the normal children so that they don’t feel demotivated or inferior. People should in fact help them in doing various things and keep praising them over small things rather than insulting or saying wrong about them.
Thank you for this. It is so hard as parents of children with extra needs. It’s also very confusing, and this is the first time I have ever seen other parents voice my feelings (which is such a relief). We do great work in our churches with regards to missions over seas, but very often forget the person in the pew with needs. We overlook our own sheep. We close our eyes and pretend they don’t exist. That’s not fair, and it’s very disheartening, especially when that same church takes up missions offerings because a team is going to XYZ country to help those who are medically in need. There seems to be such a disconnect and I am at a loss with how to handle it.
On top of our children’s special needs, we have allergies (anaphylactic) and a type of allergy to food that is different and actually can destroy the esophagus. Sadly, that’s the only thing most people listen to. Oh, allergies, OK, what can’t they eat. We don’t go to Sunday school anymore because food is so important in Sunday school (not sure why we need to feed kids candy in church, can’t we skip food?). We go to other programs but send food with them as the people that work them are more open to the allergy situation. But no one is concerned about their Autism or other issues. It’s just hard. We have very small churches in our area, so that doesn’t help the situation either. When you can barely afford even a basic curriculum for children’s programs, a special needs ministry isn’t on the radar financially. So we just go and pray hard that our children are receiving the spiritual nourishment they need and provide more of it at home to really make sure they are getting it. Honestly, from conversations we have managed from them, I don’t think they are being fed at all at church.
Jolene,
Excellent article!
I’d encourage your readers to think through all of the things about the environments in which we “do church” that might need to be modified in order for more kids and families to be fully included. How would a kid with sensory processing difficulties fare during children’s worship? Would a person with ADHD who struggles with multi-step directions be able to easily find their way around your church by following the signage? How about a teen with Asperger’s trying to do a small group that shifts from unfamiliar house to unfamiliar house on a weekly basis?
You gave folks a lot to think about!
This is a huge issue. When I was a MOPS mom, there were some moms whose children have with Autism. Granted, they were in Elementary school, but she shared with us how difficult it was for her family to attend worship. She did try to attend my church too and it didn’t work out because there wasn’t anyone qualified to care for her son, while she was in the worship service. I personally, felt really bad for her. In our family, our son has PDD/NOS, so if I wasn’t volunteering in the children’s program, he just stayed with my husband and I in the worship service. Now, it was distracting to me and my husband. So, we would take turns each Sunday sitting next to him. I’m sure the people sitting behind us were quite entertained. Each Sunday. As they watched our son. As they watched my husband and I responding to our son. It’s funny, really. And, I do realize how blessed we are because not everyone with a child on the spectrum can attend worship. If you can, sit in the back. And, I will pray for yall. That God would continue to lead you to the place he wants you to praise Him. God bless you!
This is an EXCELLENT post. I am often confused at the great lengths that churches go to support missions oversees (note: this is a very good thing and I am so glad they do it), but yet they won’t consider simple ways to encourage and welcome special needs families that live right in our own church neighborhoods.
Jesus was so right, “Let the little children come to me and do not hinder them.” Enough said.
I believe that the hardest people to minister to are the people who are sitting right on the pews next to us. Yet the church model from Acts (you know, the one that caused people to be added to their numbers daily) was more about sacrificial support and love of one another in the body.
Listen, being a Christian is messy! It’s not some pretty little package that looks good on the outside but is hollow and empty on the inside.
My dad used to say that what people REALLY want isn’t someone who will preach down at them, but someone who will jump down in the hole with them and help them dig their way out. Yes, it’s dirty. Yes, it’s hard. Yes, it’s disruptive, but my oh my, the power of the Living Christ is so powerfully present when we choose to do it. It’s time for a change!
Tell it like it is, Sister! I’m with you!
Jolene, thank you so much for this important post! Prayer IS the most important attitude adjuster available to us. I have seen Holy Spirit power knock down insurmountable barriers in the Church. Prayer changes hearts, and hearts are where real access begins.
Such needed words, Jolene. I think the hardest part about it for me as a parent is that for the church to understand, more of us parents in this situation need to be involved in Sunday School and church leadership and Youth ministry to model, speak up, and brainstorm with the rest of leadership. It’s just not that easy for us to invest our time doing that, with all that’s going on at home. And the idea of helping in Sunday school, when I’ve got a counseling center going on at home all week long… instead of listening to the message and being fed? Not super interesting to me. So… how can we work around those kinds of barriers?
I agree, Laurie. Going to an adult Sunday school class and talking to other grown ups was a sanity saver for me when our son was so ill.
I agree, if my daughter participates on Wednesday evenings at Awanas I have to attend with her to interpret and help remind her about her behavior. It’s very draining. I want her to be part of the class but Id also love attending a study too.
My church is very welcoming to special needs kids. they have disability accessibility everywhere, and the children’s primary is very accommodating to the ones who need special care or are not quiet and sit (my son has ASD and is one of those) and will often have volunteers be aides for them throughout the lesson & activities. They also are very aware of food allergies and will cater children who have those special needs. I have been overwhelmed with the level of welcoming understanding I’ve encountered when dealing with my son at church, I feel very blessed.
Wonderful post! I am so thankful that modification is happening slowly as people become more aware of the struggles of others!
Agreed!
Great article! We were actually kicked out of church once because my son couldn’t sit still. We were at the very back of the church and all the rows around us were empty, but some third-rate associate pastor decided that wasn’t good enough. I refused to go back to church for an entire year. Unfortunately, my husband would not consider finding another church so now we tag team in taking our other child to church and leaving our son with autism at home. Now, I dread going to church at all, but my older child seems to get something out of youth group. I, on the other hand, feel completely disengaged from it and would just rather not be there at all. I have talked with the youth and children’s pastors to see if we could brainstorm some ideas. I have suggested that perhaps an older teen who might be interested in working with children could work with my son once in awhile. “Would look great on a resume or college application,” I suggested. So far, no takers. These kids have absolutely no problem with going on a missions trip to some impoverished country and spend a few weeks in uncomfortable conditions (which is great–I am not putting that down), but are not willing to spend a few hours ministering to a local child in need. I have considered looking for a different church on my own that will be more accepting of my son, but that doesn’t seem to be right either because it sounds so unsubmissive or whatever. I know my post sounds very negative, but I am just so frustrated.
Vonnie,
I’m so sorry to hear about your bad experience. Thankfully, lots of churches are changing their attitudes, but as you know, the change is slow. I encourage you to contact Mike Woods, our fearless leader here at Not Alone. He’s also in charge of special needs ministries at First Baptist of Orlando. He may be able to direct you to some resources. Also, check http://www.keyministry.org. They actually train churches at no cost to help start special needs ministry. Maybe their expertise would get your church moving faster.
I am so sorry this happened to your family, we too have a local ministry that has only been together a year. They are working to change this in their congregation and church as a whole locally. I hope you can find a place for your family to connect spiritually.
Wonderful, wonderful, post. Jolene. Prayer for the church, our leaders and our OWN attitudes is the hard work of being faithful when we are so discouraged and tired as parents. But I am seeing, first hand, how prayer for my church’s leaders resulted in God connecting some special needs families into the lives of our pastors who are now coming along side and getting on board. I couldn’t have orchestrated the events that lead to their “conversion”, but God could and is. But prayer must be there first. We are starting a respite ministry. However, I have become complacent, since, and your post reminds me that prayer must continue! (Because another hurdle we have not successfully jumped is for inclusion.) Great thoughts. True thoughts! Thank you :0)
Kelli Rae,
I’m glad the post spoke to and motivated you. Best wishes on that new respite program!