It’s always been relatively easy to take Picasso to church, in the past. He’s familiar with most of the people with whom he interacts, he’s familiar with the layout of the building, he is used to the schedule and the routine.
Last Sunday he got promoted to the next Sunday school class. The man who had been Picasso’s Sunday school teacher went from having just Picasso in his class, to now having up to 7 kids – talk about a change of pace for that teacher!
The class to which Picasso got promoted has a few older kids and is not as “fun” becuase it’s not a one-on-one class. Still, there wasn’t much trouble last week getting Picasso to go to his new class. Today was a different story, unfortunately. Part of the problem for our guy, is that the teacher teaches 2 weeks and works the third week, so it’s a different location, different kids, and a new teaching schedule for Picasso to get used to. Today was her day to work, so it was yet another change that he had to endure. Tim is the teacher on the weeks she works, but getting a special needs kid adjusted to a new schedule is tough.
We’ve been talking about starting a ministry for special needs families at our church. It’s definitely a growing need in our local area, and we’ve already established that it would be a good ministry to these families. Some of the reasons we’re wanting to start this ministry include:
*opportunity for parents to have their children in small-group settings with other kids, learning about God
*opportunity for parents to have a small break from their child, and attend church and focus on the message
*opportunity to reach out to a segment of our population that need support
*opportunity to let families know that our church exists to help meet these very real needs
Being a mom to a special needs child, I can appreciate the formation of this ministry. Yet, I thought that I’d be able to function as mostly a support person in this ministry. Today I longed for the opportunity to have a break from my child, and to have someone else be there to be his support person.
Today, I felt very out of place at church. I saw that, for now, church is not a place that is easy to go with your special needs child. I was very much alone as I dealt with my child’s issues. This was not anyone’s fault, there’s no one to blame, and I’m not upset with anyone. And in fact, it is hard to even think of a way in which someone could have helped. I just saw the need for a ministry to special needs families from a different point of view today – as a struggling parent.
Picasso was not being bad, but he was clearly having a tough time. His behaviors worsened, which definitely made it look like he was being bad. But what people need to understand is that the behaviors increase as his anxiety and internal struggles increase. His behaviors are an extension of his struggles, not just a desire to be naughty. As his mom, I am probably the only one who can make the following statement about him, based on my full knowledge of him: I truly believe that there is not an ounce of him that ever desires to cause trouble. Sure he likes to have fun, he doesn’t always hear someone saying, “Stop and sit down now,” but that’s complicated by his inability to process things he hears. This is a kid who wants to be good, and wants to be a helper, and wants to excel in all areas of life!
So what would have been different today if there was a special needs ministry already in place? He probably would have someone serving as a shadow/wrap-around ready to move in to help when needed. He probably would not have made it all the way upstairs to his old classroom before I, or his shadow, could get to him. That person also could have probably distracted him and gotten him to stay in his own classroom, and could have reminded him of the schedule via his picture/word schedule.
Unfortunately, that didn’t happen today – but I’m hoping it happens soon! We’re seeing an increase in negative behaviors which means there is more stress in his little body. Things that have never been a problem are starting to become problems – for example, he’s beginning to undress a little as he implodes a little more. Last time this happened it was his shoes and tie (he wanted to wear a tie that day); today it was his shirt.
What did happen today was that I struggled with my son. I struggled to keep him safe, I struggled to keep other people’s property safe from him, I did all the things I know that usually work. They didn’t work.
I wanted to go home. I wanted to be done fighting. I wanted to give up. I felt very alone. But church is a big part of our life. Quitting on church is not an option. I think some re-evaluation is necessary. I think that some education for others is also necessary. Our son is part of our family and our family goes to church on Sundays – we go to OUR church on Sundays.
I will say – I love our church – I love the people in our church. I love knowing that we are prayed for more than I know! I love the fact that there are people who truly understand what we’re going through, and help and encourage us. I love knowing that there will come a time, hopefully sooner rather than later, where more families like ours can come to our church and know that they’re not alone in their struggles with special needs parenting.
And hopefully my son will remain mostly-dressed from now on. But if he’s not – if he’s walking around in bare feet, or with his shirt off for a bit, please show us a little grace and compassion. Don’t judge us – I’ll get him to put his shirt back on eventually.
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