He grinned when we called him the peanut butter in our family sandwich, giggled and squirmed when we tickled him. Along with his giggles, I heard the wheezy, asthmatic sound of his breathing – a condition called tracheomalacia which went along with his esophageal birth defect (EA/TEF) – something the doctors assured us he would outgrow as the cartilage around his bronchial tubes hardened.
I woke, disoriented and twenty-six years older than in my dream. I left our bed, where my husband, but no son, lay sleeping. I stumbled through our house, not the one we shared with our toddler son. I couldn’t shake the dream. It lingered all day long. The odd sound of our son’s breathing and the sweetness of his small, high voice and delighted giggles echoed in my memory. All day, I missed our child, ached for his small body crowding in between us, longed for his little boy, sweaty smell. More than once, tears came to my eyes as the realization that those years and those sounds, even the wheezy ones caused incessant worry, were gone forever.
Because the doctors were right. Our son outgrew the tracheomalacia around the time he started kindergarten. He left his wheezy gurgles behind, along with his fascination with dinosaur bones, his adoration for Mr. Rodgers and the Land of Make Believe, and his love of Legos. (Well, strike that last one. He still groves over Legos now and then.)
In a few days, our boy turns twenty-nine, and I rejoice in the man he has become. His face is whiskered, his step confident, his laugh deep, his voice resonant, his breathing quiet. He is a good man – loving, thoughtful, creative, and caring.
But he will never be three again,
never jump into bed between us again,
beg to be tickled again,
delight to be the peanut butter in our family sandwich again,
giggle with his wheezy gurgle again.
So this day, in the wake of a most vivid and lovely dream,
I am grieving for days that can never be again.
I am missing our little boy.
I am learning what it means to be a mom.
By Jolene Philo
The Americans with Disabilities Act which was signed into law back in July of 1990 established a national mandate to protect persons with special needs from discrimination and other social injustices.
As a result, we saw a change began to take place in our public school systems where every child with a special need began to be entitled to receive the same education right alongside their peers that were labeled non-disabled. The ADA has also had a big influence on a shift to more inclusive neighborhoods for people with disabilities and a shift away from segregated residential facilities. Not that long ago a meaningful job wasn’t always considered a realistic opportunity for a person with an intellectual disability. But I’m happy to say that the workplace, like community and educational settings, is becoming more inclusive too.
Friends, your church is in a prime position to model the spirit of the ADA or more importantly, model the example of what the Holy Scriptures remind us to do…”Treat others as you would want them to treat you.” I’m here to tell you today that some communities of faith are doing a great job of opening their doors and being a place of inclusion. It’s essential to find ways to make room for people with special needs in your community of faith. Why? Because Jesus evoked the inclusion process in His mission statement, He said: “Go ye into all the world and preach the Gospel to every person.” He didn’t add any disclaimer about excluding those who had too little ability, there were no exclusions for those who were physically or intellectually different.
So how do you begin the journey of becoming a community of faith where you welcome and make room for the participation of people with disabilities, a place where everyone has a presence rather than just being physically present, a community of faith that ensures that everyone participates in sharing their life and not simply sharing space? What is a good first step? Well, it all starts with a simple assessment.
Assessments can be useful tools for reflecting on how are you doing or in this case “How welcoming of a community of faith are we?” Assessments help you to take an objective look at the areas where you are strong, but they can also reveal the areas that need improvement. As a community of faith we are called to be a people of change…not a people of status quo, a stagnant non-growing body of believers but a people who are striving to grow, to become more tomorrow than who we are today.
The Church Welcome Assessment is a tool for prayerful self-reflection. It can help to answer the question, “How welcoming are you?”
Last week one of my friends, Dean Bohl, was looking for feedback about ideas concerning a Sensory Room for a special needs ministry…a very beneficial idea for many children with autism and sensory processing needs!
Once you have what you need for a sensory room, what next? Well, it’s time to put the child on a “sensory diet!” What on earth is a sensory diet? Is it a diet of only certain foods or certain calories. No!
A sensory diet is a term used to describe sensory activities that are used children with autism, ADHD, or Sensory Integration Disorder.
Just as your child needs food throughout the course of the day, a child with autism, ADHD, or SPD needs sensory input, and opportunities for getting away from stimulation, spread out over the morning. A “sensory diet” is a carefully designed, personalized activity plan that provides the sensory input a child needs to stay focused and organized throughout the morning. In the same way that you jiggle your knee or chew gum to stay awake or soak in a hot tub to unwind, children need to engage in stabilizing, focusing activities, too. Young children, teens, and adults with mild to severe sensory issues can all benefit from a personalized sensory diet.
Here’s a resource for you that identifies a handful of sensory diet activities that could be incorporated into your child’s Sunday morning church routine:
As a father of 3 boys, each with special needs, I’m drawn to other parents who are in a similar situation as mine. That’s the reason why 85% of my acquaintances on my FB page are parents of special needs kiddos also.
I was interested in how many of them attend church even if it does not have a special needs ministry. So I used Survey Monkey to design a survey and then posted it on my Facebook page. Here are the results of the first survey question:
“Do you currently attend a church that does NOT have a special needs program?”
136 of the parents responded to this survey question. 20% of them answered “Yes.”
I wanted to share some of their individual comments with you. These comments are a reflection of how appreciative parents of special needs children are for churches that have been a place of welcome and inclusion:
Elaine: “We attend a very small church and there are only 3 children in the intermediate nursery. They take excellent care of my son.”
Terry: “Our church does not have a special needs program. We are a small church and kids with special needs are welcomed and have roles all their own. My son is an altar server. Other children are simply part of the congregation. It is a blessing.”
Margaret: “Our church does not have formal program, but has provided a shadow in sunday school for our son for years. They tweak the program each year, and currently rotate high school boys to shadow him. And, yes it does allow us to attend church which I find peaceful and renewing.”
Bill: “Our church does not have a specific Special Needs program, but they do teach the leaders about different disabilities. They have been so welcoming and accepting of my son. They would do anything to help make it so he could function in the Primary. So far he does fine with the visuals up and the routine is the same week after week. I am blessed to have it this way for us at Church.”
Lorraine: “No churches in my area specifically have a ‘special needs’ program. But some are more welcoming and accomodating than others. It was very hard to find a church to suit not only our special needs but our needs as a family to make sure everyone gets what they need spiritually. But I think we have found one now.”
Ashley: “Although the church I attend does not have a special needs program, they have accommodated my son’s needs from the time he was little. At three years old, they gave him is own Sunday school teacher, and she was amazing! Since then, he has attended regular classes with the children and youth, and the teachers and other kids are so friendly to him. These kids who have been kind have also been blessed to learn how to have a friend with special needs. It has been a win/win situaton. I am so grateful to these parents and kids every day for doing what Jesus would do–being kind.”
Beth: “Our church does not have a special ed program but they are very open to special needs kids and include them as much as possible. I would like to see them offer more support to the parents though like respite days when we can leave our kids for a brief time for a date night.”
I wanted to add my “thank you” to all of you who are finding a way to include families who have a child with special needs!