I’m saying’ it. Special needs isn’t easy. In fact, it’s pretty hard all most all of the time. There are things that become a new normal or fairly routine, but it’s still not easy breezy. But we all know that God never promised any of us an easy road. In fact, I’m pretty sure he said his way would be a little more difficult. (John 16:33)
This week has been another particularly difficult week. More difficult than the normal difficult anyway. It’s been the kind of week that has laid my struggles out on Main Street, U.S.A. for all to see (literally). My son with special needs is still in a stage of life that has behaviors that aren’t explainable in his body of a young man. This is dangerous for him and anyone around him. This keeps me awake at night writing blogs in my head and praying prayers of desperation.
A couple of things I’ve been reading reminded me that maybe God is using my boy and actually drawing attention to him for a greater purpose. I’ve said before I really respect a writer, Greg Lucas, for the things he writes about his son’s disabilities. He has a way of pointing me towards Christ every time. Another recent article written by Sheri Dacon mentioned special needs is kind of like being naked in public. She says everyone notices in one way or another: some people are mortified by the nudity (special needs) and run away, some pretend not to notice but actually peek from around the corner, (This would be the acquaintance that walked by, then got in her car two cars down and continued to watch our SUV rockin’ peep show – MmHmm, I saw you. Next time offer help or move on.) some people will just out right stare at the nudity without apology. A friend once said being a pastor’s family is similar too. She said it’s like living in a fish bowl where everyone can watch your life on display. But dang, it gets tiring. I just want to crawl under a rock and never come out. But how is that glorifying God? He’s drawing attention to our weaknesses for a reason. I’m guessing it’s for His glory, not for my harm. (Jeremiah 29:11)
So in between blog writing in my head in the middle of the night I am praying those prayers of desperation. I have been thinking about Christ praying desperately. Luke 22:44 says he prayed so hard his sweat was like blood. Now I’ve prayed so hard I’ve cried. I’ve cried ugly, heaving, snot, prayed. I’ve prayed so hard all I could say was, “Jesus”. I’ve prayed so hard I didn’t even know what to say but hoped the Holy Spirit was speaking the words for me. But I know I have never prayed so hard that my sweat was like blood.
So while I wait on God’s plan to unfold for my son’s and my family’s life, I will continue to pray through our difficult days.
Bible verse I’m loving today:
Luke 22:43 “An angel from Heaven appeared to him and strengthened him.”
I was recently asked by someone if she could ask some questions about my son that has special needs. The person who asked had every right to ask questions. Why? Because she is truly invested in our family and in my son.
But this led to us talking about who does and doesn’t have the right to ask personal questions about kids with special needs. Some people think they have the right to ask such personal questions that it sends me over the edge at times. I have stopped going to parties of even close friends because there will be people there that think because we are a friend of a friend that gives them the A-Okay to ask invasive questions. Think again, people!
Here are a few tips to know if you should or shouldn’t ask questions.
Are you a close family member? And by close I don’t just mean related. Do you see each other, interact, hang out often? Then you have probably earned the right to ask questions. You probably already know the detailed stuff. Do you see each other only on holidays? With so many forms of technology to connect you may be close and only actually see each other at family gatherings. But if you only speak at the potlucks then maybe ease into some general questions first and see where it leads. Take your que from the parents. If they seem open to more questions then by all means keep the dialog open. If your questions get answered with short yes or no’s. It might be best to end the interrogation before you get punched and one of those fabulous family fights breaks out.
Are you a close friend? And by close I mean would she answer your text in the middle of the night? For me, other than the aforementioned close family, this is a pretty short list of about two people. I could maybe stretch it to three for an emergency. But I NEEEED my sleep so that text better be important. And those two people know that. They also know at what time I will no longer be answering texts. Sure, you can send as many as you want. But these two people are the only two people that will get an answer from me after that time and they know this. So go ahead and test this theory if you think you need to, but my advice is to think it through first. (I get kind of cranky after a certain time. My family calls it the vampire coming out if that gives you any warning, hehe.) If you don’t think the special needs parent would answer your text in the middle of the night, then don’t ask her personal questions about her child. If she leads the conversation to these subjects, then she has given you an open door to ask some questions. But be gentle.
This leads me to one more thing. Privacy. If you are privy to this child’s private details, please, PLEASE!!!!, do not share this with other people. (Remember, I asked nicely and said please. I know if I find my child’s private details have been shared without permission I can get a wee bit nasty. And FYI, so ends the open door policy to the private info.) You have been invited into someones personal and sensitive information. No one wants to hear that friends of friends are “praying for you” or whatever on Facebook. Your close family and friends are not necessarily their close family and friends. Err on the side of discretion.
So ends today’s tips on questioning the special needs family …
Bible verse I’m loving today:
Believe it or not, my son that has special needs is the one teaching me. I think we all have something to learn from kids. This shouldn’t surprise me. Jesus tells us to look to the children if we want to know how to receive the Kingdom of God (Luke 18:16-17). But I never expected to learn something about vacations from my son.
Recently my sister visited England. My dad and brother biked across the state. My brother is traveling through the United States and Europe during his pastoral sabbatical. My step-mom just returned from a mission trip in Mexico. My friends are taking trips this summer that include the Black Hills and other places. Everyone is going somewhere.
Later today I might go to … Wal-Mart.
Being the mom of a special needs son means we don’t vary our routine by much. All children need a routine (and some of us adults benefit from one too). But we depend on routine. We may decide to go to Target instead of Wal-Mart or the playground by the lake instead of the one by the city pool. But our routine is basically the same everyday. Some special needs kids crave the expected. When that changes, the unexpected, the unknown, it messes with their equilibrium. And when you mess with this world, you can create turbulance worthy of seeking the nearest storm shelter.
So, needless to say, we don’t vacation much. Routine is just one reason we stick close to home. We’ve learned the hard way “There’s No Place Like Home”. But every spring I get asked, “What vacation plans does your family have this summer?” I thinks it’s harder for the person asking the question to hear my real answer, so I usually hem & haw around trying to find the right words without putting a damper on their own vacation excitement.
So here is where I get to what my boy is teaching me. My reasons for wanting vacations has always been all about ME. They are all about why I need a vacation, where I want to go, what I want to do or not do … you get the point. All about me. But if my son was more able to plan his vacations, I am absolutely sure his trips would be all about everyone else. He is a people person. If my mom were alive today she would call him a ‘social butterfly’. He LOOOOVES to be with people, talk to people, see people all day long. He would spend vacations hugging, invading personal space, asking very personal questions. (For instance, “What’s the name of your underwear?” Yep, you heard me. Make your answer creative. We don’t want to hear any boring Hanes or Jockey answers.) But mostly … loving people unconditionally.
What I am learning about vacations is what my son already knows about life. It’s not about me. It’s taken me all these years to figure something out that he lives day in/day out: Love your neighbor as yourself. My son with special needs is brilliant.
Bible verse I’m loving today:
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