The morning had been going so well. It was a Sunday morning and we had to be at church early for rehearsal since I was on praise team. Everyone was getting ready to leave without much difficulty, except for my poor husband. The dog had been let out for a minute, but it was raining. He came inside when Kyle called him, and then promptly shook his whole body. Kyle’s pants were now splattered in mud, so it took an extra two minutes getting out the door since he had to change. Other than that though, it was a good start to the morning. There were no arguments, no meltdowns, no words between brothers. Sunday school seemed to go well too. I base that mostly on the fact that I was not summoned out of my class to go handle anything, but Sam’s teacher did say he did a good job too. I was so hopeful.
Church began and during the worship songs, I could see Sam singing with gusto from my place on the stage. I don’t believe he’s trying to be silly when he sings and moves his hands around the way he does, though it sometimes looks like it. He sings in kind of an opera-mocking way, with clenched fists held tightly to his body as he bounces from foot to foot, with over-dramatic expressions on his face. I actually think he’s very happy during those moments, and his happiness just looks different than everyone else. Frankly, I’d rather him do that than sit in the pew, refusing to put down the iPad or stop drawing on paper. So I smile as I sing, praising God for the smile on Sam’s face and the songs coming from his mouth.
“Maybe this week will be better,” I thought to myself.
Last week proved to be a difficult day in church. The boys were sitting a bit too far away from me and I motioned for them to move closer to me. Benjamin, my 10 year old and oldest son, quickly moved over next to me. Sam followed on the other side, but as we were standing and singing, he had his arms wrapped around Ben from the back and was jumping on him. I leaned over and quietly, yet audibly, told him to stop and move to be in between me and Ben. The song stopped and everyone was asked to be seated. I pointed next to me and whispered to him to move. He loudly refused, jerking his body away from me and nearly falling on the floor. It was one of those moments where I had to make a decision. Was this a hill to die on? Was this a battle worth fighting? But he was being too disruptive, too unwilling to obey, that I had no choice but to take him out of the sanctuary to calm him down. Once I said we were now going to go out and talk, he got louder and refused to move. I just didn’t feel like I could simply let it go at that point, so I picked up his 50lb body, cradling him in my arms, and walked down the side aisle to the back and out the door as he yelled and kicked against the wall. In a church of about 100 members, there is no possibility of being subtle, or getting lost in the crowd.
Every eye saw, and every ear heard us. There was no escaping being noticed.
That was last week, when we had already had a couple, ahem, shall we say issues before church even started. Surely this week would be different… Right?!
Trouble began no sooner than I took my seat after singing, just before the sermon started. My youngest son wanted a turn on the iPad, and a quick note to Sam from me to inform him of the iPad changing hands was actually received better than I anticipated. He willingly passed it to his brother, and then pulled out his brand new deck of cards he bought at the store the day before. Big brother Ben has been getting into magic tricks with cards, so of course, Sam wants to do it too. I didn’t know he had his cards in his pocket, so it was another lightning fast decision to make on the spot. Our rule is that toys are not allowed in church. Drawing on paper or on the iPad is acceptable, but not playing with toys. In a whispered conversation, he told me he was going to practice his cards on the pew. Saying no, he can’t play with cards in church, I thought he might react like he does with so many other things: sighing a little too loudly, but following directions anyway. But I wasn’t that lucky. Instead, as the preacher began his sermon, Sam spoke in a normal, frustrated-almost-crying voice, responding to my statement that playing cards is not appropriate by saying, “Why is it not appropriate? It’s not gross!” I was willing to try to quiet him down if he did it quickly and let him put the cards away without further incident, but my hand was forced again. As he held the cards, trying to put them back into the box, they fell all over the floor. And just like that, the streak we were on broke. He broke into tears. Without hesitation, I swooped him up in my arms and climbed over some of our teens at the end of the row (and one father who moved into the aisle to let us pass) and struggled down the side aisle toward the back. Again.
He was still talking too loudly and would not quiet down in the small sanctuary foyer, so I took him to the basement where a local preschool uses our space. There, I endured a battle of wills that I haven’t encountered in a long while. As he sat in a time-out in order to calm down and spend time not talking, I walked around the large room as I silently had a hissy fit. This was not what I wanted today. Not what I wanted right now. Not what I needed. I was alone, fighting a battle in the church basement while my family upstairs was worshiping and hearing the Word of God preached. Without me. Without us.
My mind wandered to countless families of children with special needs. I thought of the audience of this website. I thought of the special needs Facebook groups I’m in, and the stories I have heard from the people in them about not getting to go to church at all because of the severity of their child’s needs, or worse, the attitude of the churches they attend towards their child and family. As I dealt with the challenges of autism in Samuel, all the while hearing a muffled voice proclaim the Gospel above my head, I remembered that I was not alone. It felt like we were the only ones struggling. No one else at church had to carry their 8 year old child out of church for any reason other than… no, for any reason period. There may have only been two of us in the basement, but I know there were many more of the same scene being played out in churches all across the country.
I remembered something else too. Even though I wasn’t able to hear the sermon for the first 15 minutes, I knew what the theme was. It was the last sermon in the book of Ezekiel, and the over-arching theme was this: The Lord is there. As comforting as it was to me that in the broader picture, we are not the only family fighting this fight on a weekly basis, we were also not alone because the Lord was there with us. He was there strengthening me to address his needs to the best of my ability. He was there quieting the soul of my son, calming his body and his voice until he was able to go back into the service with me without another meltdown. He was there, ministering to my hurting momma’s heart over having to go through this in the first place, separated from worshiping together with my husband and church family.
Dear parent, you are NOT ALONE. You might find yourself in a closed classroom, bathroom stall, or empty basement with your struggling child while everyone else sits in the church pews or chairs without you. You might find yourself at home, watching a TV preacher or listening to a podcast because it’s just too hard to fight for whatever reason. If, in the midst of your surroundings, you find yourself feeling like you are the only one and you are alone in your struggle, remember me. Remember the community found here. Remember our faces and our stories. But most of all, remember Jehovah Shammah.Â
The Lord is there.
WOW, do I get it!!!
And as our Autism Spectrum 5 yr old gets older and bigger, the bigger the battles, and the less he is interested in any kind of sitting, and the MORE alone we feel, especially in a church with NO other special needs but our 4!!!
SIGH!!!
Sarah, so many battles in the basement, and bathrooms, and church pews over the years, but the overwhelming message is GOD IS WITH US through it all. Thanks so much for the reminder!
Thanks so much for this post. I know I’m not the only parent who can relate directly to what you’ve described. I appreciate you reminding us that when we feel so alone and isolated, God is there with us.
This is a great reminder that we are not alone. Thank you for sharing your struggle. I don’t think anyone knows the battles we fight with our special needs children and the strength that it take not only physically but mentally .
This past Sunday my 12ish year old who is Cognitive Impaired and on Autistic Spectrum decided to do several things that I had to divert my attention from the sermon and church. Its getting harder because my son is almost 6’0 tall and weighs 180. Cannot carry him anymore. Its getting unbearable at times.
I totally get we are not alone. We have been on this journey since he was one and at times it is good and other times just unbearable. As I was reading your post the same thing or question keeps coming back to me. When our church and all that are in the building see things like this or if they especially know the family why can’t anyone offer to help? Not one person steps in and offers to help carry your child or better yet just sit with you while you are attending to your child. Just it would give you that sense that someone saw you and your pain. This is something I have been fighting for years and not just with me but I see it happen with other families. Why does the church not step up ? It enough to leave you screaming inside and almost to the point of why even bother to go to church. I know we have all felt this. It hurts. Most of the time I can plow through as we all do but as he is getting older it is getting harder. God has us this I know but at this moment It is getting harder to be at church. Might be one of the reasons God has is placing this type of ministry on my heart for our church. Ive been there and I see those who struggle. So many times I read things like this and I just think if just one person who step up and help us or you all. It would change so much. Thanks for posting
MissyWang,
I understand what you’re saying. I think that most of the time, the struggle for others watching is that they don’t know HOW to help. They probably aren’t going to be the ones to carry your child out of church in the middle of the sermon for you because they think you are taking care of it, the child may fight them on it, and they might offend you if they try to step in. I think that most people probably just don’t know what to do to help. They know they are not going to be able to talk to your child – they don’t know them very well, or even if they do, dealing with a meltdown is a totally different situation than most others. I think they might feel like they would be more in the way if they tried to do anything in the moment.
I have found that even if people aren’t trying to help in the moment (this is usually in the middle of the service for us, so that’s understandable,) they let me know they are praying for us, or they saw us walk out and they weren’t sure what to do, but stopped to pray as we walked out. We can’t expect people to do what we think they should do if we never tell them what we need. Maybe there’s a way to talk to people when they ask, or in a general form somehow to let them know what it is you need as a parent when struggling with your child. Do you need help taking him out? Do you need someone to sit with the other kids while you go out, so a simple seat change is all that’s needed? Do you need/want someone to walk out with you?
I think it’s important to remember that just as we are trying to figure out how to handle things when they come up, they are too. They don’t want to hurt our feelings by making us feel like we don’t know what we’re doing; they want to respect us as the parents. They don’t want to offend by offering suggestions. They need to know what it is we desire of others. I have told people in our church that they don’t need to do anything with Sam. Just give me a hug, or sit with me. That it’s okay if they tell me they didn’t know what to do, at least then I know they wanted to help but just didn’t know how instead of feeling completely ignored.
The body of Christ are made up of fallible humans who I believe want to help, but just don’t know how. Don’t give up on the body. There is more blessing in being a part of the body than not, if you’re able to continue being there. And if God is placing this ministry on your heart, then follow that!
Blessings,
Sarah
Thank you for reminding me that we’re not alone!
My husband and I are going through the same thing. Our daughter has Trisomy 9 which causes multiple physical and cognitive issues including sensory sensitivity. As she gets older, she is less tolerant of the musical instruments, the microphones, and the crowds–our sanctuary seats about 250 members. For the last month, I have missed most of the service because I have to leave the sanctuary and go to a quieter part of the building or we have to leave service early to go home because she has a meltdown. My daughter is developmentally delayed, non verbal, and a toddler so she can’t communicate her discomfort. I am praying for a solution so we can continue to attend worship at our church. Glad we are not alone. God bless.
Thank you for your open heart. God knew I needed to read this first this morning before responding to an email from a Sunday school teacher about my son’s behavior. I am “feeling” so raw and emotionally drained but I do know that the enemy would love for me to “feel” this way. My son is 7, has cerebral palsy, many physical and cognitive delays, etc. We have had a continued increase in behavior problems over the past several years and it has come to a point that causes me extreme anxiety and isolation.
Each and every step of our day needs to be planned out and anticipated to make the best of a possible situation. There is so much effort that goes into the simplest tasks and outings. When church becomes such effort it is sad and painful to me. Just being honest, I KNOW that God is there, I need him each and every moment. I know that unless a person walks in our shoes it is difficult to really understand, but it feels so painful and isolating when we get looks, comments and feel like we are the only ones experiencing this at our church. The leaders of children’s activities will say that they are open to dealing with special needs kids, but I just don’t see a lot acceptance going on. As long as my kids fit into the expectations of the typical kiddos we are fine, but once we need a little bit of thinking outside the box, all compassion seems to go out the window. Just this Sun my 7 y/o was caught drawing with a crayon on the window and when asked would not cooperate with cleaning it up per the teacher. What actually happened was that a pretty big scene was made, the entire class of kids was made aware of it and my boy then became a spectacle and became a clown, then dug his heels in. Crayon on a window. Not real destruction, but defiance. My husband and I are tough on discipline, this is not okay, but calling out a special needs child with tons of other sensory issues (in front of a large class of children) is not a way to get him to comply. As soon as class was over and my husband went to pick him up we were made aware of it by the director, we picked up glass cleaner and my son and husband went to work to clean up. My son lost privileges at home, we talked it over, etc. And still I get an email asking me what we are going to do to prevent behavior like this from happening in the future. Oh boy…don’t get me started! What I really wanted to email back to the teacher was something like… “if crayon on window is the worst thing that he does that day it would be an amazingly awesome day!” Honestly, I wouldn’t really do that. But I think it. And is guess I can sigh, then chuckle a little, because truly if that’s the worst then things are good. this is coming from a mama who loves her boy, a boy who strikes out in fear, scratches, hits, pinches, bites and also gives good hugs and lots of I love you’s at just the right moment. A child who is loved by God and needs to experience church and real life situations because this is life.
Thank you for sharing your heart with your post. For letting us know that we are not alone and that our Father is with us in this journey.
God is INDEED Jehovah Shammah… since another dramatic ‘Meltdown’ episode occurred recently on 17 March 2014 between my son, currently aged 18+ and me with the intervention & arrival of 6 policemen’s at my home.
My family has been engaging in this on-going ‘Battle Fields’ around ALL the places (home, neighbourhood, hospitals, shopping centres,, churches, & etc….) in Singapore with our 1st born son since he began his 1st baby steps, aged 2+, the ‘Adventure Journey in the World of Diversity of Special Needs Spectrum’. At age 7+, Josiah was diagnosed with ADHD / 10+ ASD / 14+ onwards…………Finally, Josiah, being a patient with IMH for past 10 years, was diagnosed with the CO-MORBIDITY conditions.
Upon reading your article on ‘Battle in the Basement’, I took comfort in knowing that I’m not alone in this parenting journey. Jehovah Shammah is ALWAYS THERE for us, as parents with these ‘Special Needs’ generations who will ARISE & SEE in their lives being fulfilled with God’s given DESTINY !
Thanks for this post. I can see my family’s story in the comments from others so there is no need to re- state. For so long I wanted others to see and understand and step up to help and still do. now it is just not a top priority for me. When I focus on ‘the things’ I tend to miss how God is working in my heart and pressing into his words of walking by faith. Days are still long and harder than…..when the alone-ness bangs at my door constantly. remembering I’m not alone in the Lord
Denie,
I understand sound sensitivities. You probably have already tried this, but do noise cancelling earphones work? Amazon has some called Pell and they come in different colors so she could have pink or purple. Or check out the hunting section in Walmart to find them. Sometimes the sensitivity to wearing the earphones is even more difficult, but maybe that would be a helpful solution?
Keep going, mama. You’re not alone. Remember Jehovah Shammah.
Denie,
I understand sound sensitivities. You probably have already tried this, but do noise cancelling earphones work? Amazon has some called Pell and they come in different colors so she could have pink or purple. Or check out the hunting section in Walmart to find them. Sometimes the sensitivity to wearing the earphones is even more difficult, but maybe that would be a helpful solution?
Keep going, mama. You’re not alone. Remember Jehovah Shammah.
Very encouraging, uiifptlng and true! It’s comforting to know that the trials that come into our lives never catch our heavenly Father by surprise. Having realized that He promised never to leave us or forsake us, I now go on the offensive to contend for the faith and to glorify God with praise, worship and thanksgiving when tests and trials come. We are admonished by scripture, In everything things give thanks: for this is the will of God in Christ Jesus concerning you. 1 Thes. 5:18 No matter what comes our way, we can thank Him for His strength to carry us through.
I know as a Kid’s pastor it depends on the family. Some parents are so embarrassed that’s why we don’t want to approach you to draw more attention to the situation and melt down. It is good to ask the Children’s pastor or Youth pastor to coffee and then ask them and tell them what you need in these situations because what I have found with most people who minister to kids is that there heart desire is to see all kids feel the love of Christmas and know him. If that’s helping you with a melt down or whatever they are willing to help but you as the parent and expert on your kids has to educate them.