I am an introvert. I enjoy solitude. But solitude is very different from isolation. Solitude is a choice. Isolation is the consequence of a situation. One of the most difficult things I am experiencing lately is the isolation that special needs can create. Special needs can be isolating to the child with the needs and for the family members. Support in itself is easy to find. We’ve had that from the beginning. Support is in place from the time you leave the hospital almost. Besides the umpteen doctors, there are therapists; physical, occupational, speech, recreational, cognitive, you name it and we’ve had it. We still have a variety of doctors, therapists and educators. They are all needed and so valuable. I couldn’t get by without them. But I’ve hit a point where I miss doing real life things.
My husband and I have gotten used to doing things separately. One of us is always with our son while the other recharges. A couple times a year we get to go out together and we realize how much we miss being alone together. We experience the same isolation from friends and church groups. And we miss them.
In the beginning when my son was young we had friends that were also having babies. Like most young couples we would get together and let our kids play. But as our children grew in size, my boy remained mentally at a young age. This can be a strain on even the best of friendships. It’s not that we didn’t try to remain close. But the differences between our children became more obvious and harder for each of us to address. Before you know it years have passed and there aren’t many people left that surround the special needs families.
The same applies at a young age for church life. It’s easy in the beginning to plug into a class. Everyone is willing to hold and teach the cute, special needs infant and toddler. But as the years progress, the challenges also progress. Most of our churches aren’t equipped to care for a child with intellectual disabilities, let alone teach them. So our churches go much like the rest of the world. If we say hello in the hallway then we haven’t neglected the least of these, right? Meanwhile, not only is the now teenager not being ministered to in our churches, but the parents aren’t ministered to either. They are unable to attend any classes. And if lucky enough to attend a church service, actually paying attention to the content is rare. Step by step we are removed from the one place we have hoped to remain connected no matter what the situation. There are a handful of large churches in the United States that have special needs ministries. But honestly, we spend our lives isolated from others. We want to be included with everyone in church, not segregated yet again.
As special needs parents we come to terms with losing our connections to friends and church. But what’s really difficult to see happen is how isolating disabilities can be for our child. For whatever the reason, the world finds it difficult to be close to those with most any type of disability. We have been fortunate to have an older son with the discernment to choose great friends that try to include our special needs son. They are awesome guys that do their best. But they are my older son’s friends. A close friend for the special needs person is hard to find. No one calls up the special need kids to go out and play or go to a movie or go out to eat. Who can blame them? Not many other teenagers want to go to the park to swing. In fact, the only teenagers I see at the park are usually up to some kind of trouble. If we go to a movie we run the risk of it being overstimulating and causing a severe meltdown. And going out to eat, well there are medical issues to deal with, and I don’t know a single teen that could handle these. Quite honestly, going out without a parent is almost impossible.
What’s my answer, you ask? I don’t know yet. I’m still working on it. Or maybe I should say, God is still working on it. I’ve learned over the years there are a lot more unanswered questions in special needs than definitive answers. Until God helps me see just how we involve our family more in our community let’s go with this …
- An awesome young man at my son’s school asked my son to eat at his table during school lunch … Please keep asking. Someday it’s gonna work out.
- At church maybe you sit in the last pews by the door just because you like it there. Perhaps a special needs family could really use those last seats just in case a meltdown occurs … Risk changing where you sit, let them have those seats and scoot up a few rows. Or better yet, be brave and ask them to sit there with you.
- Do you have a once but no longer close friend that has a special needs child?… Call, text, email. It’s awkward. Neither may know what to say. But if you’ve been close she will want to know about your job, your kids, your life just as much as you want to know about her life, struggles and all.
I don’t think God ever intended for us to be isolated. We were created to work in a community of Christ (1 Corinthians 12:1-11). But I can’t help but wonder what the church is missing when those with special needs find it difficult to participate.
Bible verse I’m loving today:
1 Corinthians 12:25-26