Thankfully, seat belt use became accepted, if you will, when our boys were young. It wasn’t law yet but would become law soon. My generation didn’t grow up using them but I found it extremely comforting once we were on board. I remember if we dared to start backing out of the driveway before our younger son was buckled up, he would literally panic. It was a good habit to form from an early age.

Buckle up for safety, buckle up. Buckle up for safety always buckle up. Pull your seat belt snug, give an extra tug. Buckle up for safety, buckle up. Buckle up for safety, always buckle up. Show the world you care by the belt you wear. Buckle up for safety, EVERYBODY, buckle UP!

Beginning with car seats and progressing out of them as he got older, Jacob has always been buckled up. It wasn’t as if he was ever allowed to climb freely about the seats in the car. Yes, from day one, he was secured in a seat belt. *Until he decided it wasn’t necessary. He doesn’t have the fine motor skills to actually insert the buckle to make it click. But he can unbuckle. Sorta like he can’t really dress himself but he can undress. It goes without saying, for his safety, that of our family, and those in vehicles around us, wearing a seat belt is non-negotiable. Without fail, we buckle Jacob in as we get into the car. And, I often find myself singing the last line of the above jingle as I’m doing it.

*Until he decided it wasn’t necessary. REALLY? Of course, it is necessary. However, at some point years ago, Jacob realized he could unbuckle his seat belt. Probably most of you with children have had a time when one would discover they could do the same. And that was great if you had safely arrived at your destination and were ready to exit the vehicle. But, not okay if you were traveling.

We found ourselves needing something to keep Jacob’s seat belt secure while in a moving vehicle. At first, Mike rigged a small container that would snap over the buckled belt latch with Velcro. It worked pretty well. But wasn’t universal to different vehicles. We then ordered a device manufactured for seat belts. Again, it worked on some but not all depending on the style of the latch. A few years ago, we tried a different style and it has worked great 99% of the time.

What about the other 1%? Depending on Jacob’s mood, he has been known to shimmy under a latched belt to free himself of its confines. YES. HE. HAS. This has only happened when he is highly upset or agitated. He will slide down to where the belt moves from across his lap, further up his torso and chest, to his armpits, shoulders, and then over his head. It seems like he is going to get stuck around the armpit area or even strangle but somehow he manages. Hopefully, I catch on to what is happening by a glance in the rear-facing mirror. But he can also do it in record time. What comes next is scary. He will literally lunge toward whoever is driving and grab them. It is dangerous, to say the least. Remember he is already in an agitated state. Whether it is both of us or just me when this starts – quickly pull over and get him back in the seat (after an intense struggle). Then get home as quickly as possible.

If Jacob is happy and cooperative as we get in the vehicle, I’ll often choose to not use the seat belt safety lock. I like for him to be able to undo the latch when we arrive at our destination and leaving the lock off, allows him some control and freedom. When in use, it requires a straight edge (like a key or craft stick) to release the latch. Not hard but does take an extra step. Funny thing is, sometimes even when it seems all is right in his world, he will get in and then reach for the lock wanting me to put it on his belt. I don’t know if he is thinking, “I’m in a good mood but that could change so I better be locked in.” Or, “sometimes I do something I regret and having the safety lock may prevent that.” Maybe, “I don’t trust myself to behave today.” Whatever he is thinking, I’m definitely going to grant that request.

Whether a really short distance or a trip that takes hours, Jacob usually enjoys going for a ride. So, that’s an activity we can do to give him pleasure and expand his world. A safety lock helps us to be able to continue those outings. I’m so thankful for those things, no matter how small, that make our lives easier and provide an extra measure of security.

BUCKLE UP FOR SAFETY, EVERYBODY, BUCKLE UP!

Over a decade ago, the Youth Minister at our church rallied a team to host a Joy Prom. A prom for the special needs community. An opportunity for them to not only feel special, but to get dressed up, pampered like royalty, and dance the night away. All in a safe environment where they wouldn’t feel different but accepted whether they were in a wheelchair, used braces, or had their own one-of-a-kind rhythm. We took Jacob the first couple of years. He was able to spin, twirl, and dance to the music with people nearby but still giving him space. As great events do, the crowd grew and quickly it went from a few dozen attendees to around 500. Isn’t that amazing? I love how students, their parents, teachers, and more all come together to make it such a wonderful night. They think of everything with careful attention to detail and the honorees love every minute. It brings them so much JOY!

Fast forward to this year, the theme was Glow the Night Away and Joy Prom was in its 12th year. We decided to give it a go and take Jacob. Late that afternoon, I went back to his room and told him we were going dancing. He jumped up and wanted to hear more. I showed him some clothes I thought he could wear. (Some of the guys wear suits or even a tux. However, that is not Jacob’s style.) He could not have been more cooperative as I got him dressed and his hair combed. He was obviously excited. And was lookin’ gooooood! Then, while I got ready, he sat in our bedroom waiting patiently to go dancing. He was happy. I was happy. We were all happy.

When we got to the church, he hopped out of the van and took Mike’s hand, ready to go dancing. As we approached the check-in location, we could see the line was long. And getting longer by the minute as vans and buses dropped off attendees. We had intentionally arrived a little late hoping to avoid a long wait. Because it is next to impossible to stand in a slow-moving line with Jacob, Mike walked around outside trying to keep him occupied until we could get in. We left his wheelchair at home thinking he would want to be able to twirl and dance. Lesson learned, we can only wait in a line if he is secured in his chair. One attentive volunteer realized that we couldn’t keep Jacob in the registration line and asked how she could help. I didn’t have an answer but appreciated the offer! I slipped in another door and asked about bypassing the check-in and photo booth set-up altogether. Originally I had hoped (unrealistically) to get a picture of Jacob at the really cute photo booth. However, I wanted more for Jacob to get into the dance area and hear the music.

After waiting a few more minutes, a dear friend came out and motioned for us to come in. We were handed fun glow-in-the-dark bracelet/necklaces but Jacob wasn’t interested in sporting any accessories. The large room was PACKED! There were tables with chairs on either side and the middle section was shoulder to shoulder people dancing their hearts out. It was dimly lit (making the glow stuff look really cool), the music was loud, and there were probably 500 people in the event room. Unfortunately, Jacob was interested in only one thing, getting out as fast as he could. I quickly tried to take his hands and dance. Not having it. We managed to get from one door to another across the room in probably a minute and he was done. He was frustrated and showed it. The only thing we could do was make our way out and leave.

On the way home, we stopped and got him one of his favorites – fast food hamburgers. I wondered if he was disappointed in the evening. He had been so excited about dancing and so cooperative until we actually got there. He really had no idea of what to expect and wasn’t prepared for the crowd. I know I was disappointed. Probably way more than him. I love, love, love, that our church (and other organizations) host a prom for those that can’t or weren’t able to attend one in high school. I see what a big deal it is for so many. They get dressed UP! Hair done, manicures, the works. It makes my heart so happy. I so wanted Jacob to have that experience and was really bummed that we didn’t last five minutes at the Joy Prom.

Autism steals so much when it comes to socialization. It is flat out hard for Jacob to be around a lot of people. When our home is full of guests, he can retreat to his bedroom. When he is in his day program, he can get away from the group and hang out in his own space. I was sad and felt a pity party coming on. And then, as Mike always does, he helped me change my perspective to look at it another way. He commented that he had felt like Jacob because the crowd was even too much for him. Thankfully Mike didn’t yank a guys glow-in-the-dark necklace off, like Jacob did! He noted that an introverted person would not have enjoyed being tossed into that atmosphere. And he was right. I hadn’t thought of Jacob as introverted but everything points to that. Autistic or not, he is withdrawn and sometimes a room full of people just becomes overwhelming and draining. Mike said, “it’s okay that he wasn’t surrounded by a bunch of friends, he has us.” That is all I needed to hear. He.Has.Us. We can have our own dance party.

Was going to the Joy Prom a waste of our time? No. 1) Showing up was one way of saying thank you to the hundreds of volunteers that give their time to set up, decorate, direct traffic, provide food, chaperone, work, work, and work some more. 2) A number of our friends that never get to see Jacob, got to speak to him. I loved that and so did they. 3) A teacher Jacob had in elementary school, who hadn’t seen him in 30 years, got to talk to him. 4) I enjoying seeing several of the guys and gals, who are Jacob’s peers, all ‘gussied’ up. And, 5) Jacob looked so handsome and exhibited more patience that usual. He tried, so did we, and I’m glad we did.

At home that night, Jacob asked for an ice cream sandwich on his Go Talk. I was so proud of him because the easier thing for him is to open the freezer and point to one. That alone was cause for a celebration. So, I got one of him and one for me and we sat together having a great time. It’s funny how ice cream makes everything better.

About four years ago, two girls were adopted into our family, bringing our grandchildren number to three. They don’t live as close as I’d like but we see them as often as possible. And, we take every opportunity to have them in our home for however long their parents are willing to let them be away! Over spring break, two grands came to stay for several days. When they are here, it is safe to say, I cannot help but be on edge because of Jacob’s unpredictable behavior. They are really great with him but he isn’t always happy for the intrusion in his life. One morning he was up at 7 AM and ready to head out the door. Mike joked that he was in a hurry to get away from all the girls.

When grandchildren are in town, we are busy with nonstop activities. Making a point of cramming in as much fun as possible in the time we have. I have such fond memories of time with my grandparents that I want them to remember our times together as well. For most outings, Jacob is either at his day program (happy to have his own space) or he is home with a sitter. This visit, though, we chose to take the girls AND Jacob to a Disney on Ice show. We decided to go in two vehicles. Not knowing if Jacob might have a meltdown, I could remain with the girls and Mike could leave with Jacob, if necessary. Plus, Jacob does not like anyone riding near him in the van. He is comfortable with his chauffeur/driver and a co-pilot, but no one else.

On the way to the coliseum I talked to the girls about what we might expect out of Jacob. Remember, he is unpredictable. He might squeal. He might grab a person’s arm, hair, clothing, glasses, and/or jewelry if they are all up in his space. He might self-stem twirling his hand and fingers. He would ride and remain in his wheelchair (because we learned a long time ago that he is most comfortable in a large crowd if secured in a chair). He’d take the elevator and we’d probably take the stairs. I was just trying to prepare them so they’d not be caught off guard as they’ve rarely seen Jacob outside of home.

We got to the venue with plenty of time to spare, found our seats, and hit the concession stand. Early during the show, one grand leaned over and whispered, “Nannie,” she had my attention and continued, “I would be proud to call Jacob my son.” Just like that. Struck to the core. This young, teenage girl. Wise beyond her years. Where did that come from? Most everything embarrasses a teenager. But, obviously hanging around Jacob didn’t bother her at all. My granddaughter said what may be the sweetest thing anyone has ever said to me. It wasn’t like she was trying to give me a pep talk perhaps sensing I was frustrated. I wasn’t. We were having a wonderful time. It was totally unprompted and I was the one caught off guard. The only conclusion, that made any sense to me, was that she was seeing Jacob as a really cool dude. One she loved because he is her dad’s brother. And realizing she could be happy having a son like him one day. My heart exploded. Thank you Lord for bringing this jewel into our family. Her eyes saw Jacob with such acceptance. Before she knew her Uncle Jacob, God was preparing her to be gentle and sensitive to him. I hope we’ll make many, many more wonderful memories. I believe we will. But, I don’t know any can match her loving comment.

That night Mike sat with Jacob in a special needs section and we sat a couple of rows back. We could watch the show and see them clearly. It was such a great outing. The girls got to witness Jacob really having fun. He loved every part – the lights, the music, the skaters, the snow flurries. Smiling and enthralled. Enjoying the exact same thing they were enjoying. Aware that in some ways, he is much like them. I’d say Disney on Ice was a win for all of us!

I am proud to call Jacob my son. It seems, a certain teenager is proud to call him her uncle. And, I am certainly proud to call her my granddaughter.

April 2, 2019 was Autism Awareness Day. The blog below was posted on Facebook two years ago. It was a hard post to share then but did so feeling like others need to know the bad that comes along with the good. To give understanding the next time you may be a witness to such odd, erratic behavior. Autism is a roller coaster ride. This year the day was uneventful. YAY! Those are my favorite. I did wear blue in honor of my boy, he happily attended his day program and I went to work.

The clip art below is a pretty good summary of a description of autism. I do like the logos and clip art that feature colorful puzzle pieces. The word autism and puzzle go hand in hand. For those on Facebook, this is a repeat but perhaps you can pass this along to someone you know who is living this story. For those not on FB, here is my autism awareness post.

Sunday, April 2, 2017: This morning, Jacob was quite cooperative getting ready to go to church. But once we were in the garage, he didn’t want to get in the van. He went from side to side examining the garbage can, contents of the recycle bin, and anything else of interest. At one point Mike thought Jacob had gotten in and raised the garage door. Quickly he realized Jacob wasn’t in the van but was going to run out of the garage so he reversed the door and grabbed Jacob as he was dashing under the door. This act, sent Jacob spiraling. He tried hard to keep from getting in the van and he didn’t want to wear a seat belt. His cooperative mood quickly disintegrated and became volatile in seconds.

It was a struggle to get him in the church. Finally we got him to his Sunday School classroom but he didn’t want other people in it. He ran across to another room and just sat down on the floor. It took three of us to get him up. I felt eyes boring into me. What was wrong with our son? Why was he crawling on the floor? Once we got him back in his room he started grabbing people. Why was he grabbing people? We had to leave. Even walking down the sidewalk he was fighting us. Autism. Today I hate it. I really truly do. Don’t get me wrong. Those around us were kind. How can I help? One staff member walked all the way to the van with us. Is there anything I can do?

It is just hard. I needed a big sign—THIS. THIS IS AUTISM.

Autism is called an invisible disability. At a glance an outsider will not know something is wrong but upon observation will quickly jump to the conclusion that something isn’t right and judge accordingly. Sometimes I jump to my own conclusions and let those unspoken words sting. However, please understand that we have soooooo many amazing moments. It just so happened that Sunday morning was not one of them.

Jacob couldn’t deal with it today nor could we. The best thing for all of us was to escape to the comfort and security of home and that is just what we did. The day got 100% better once he was in his room surrounded by the things that make him happy. God calmed Jacob quickly and he enjoyed watching the Weather Channel and listening to his music all afternoon. Oh that it was always that easy.

When the day was over we could say it was a good day.

This is the day the Lord has made, let us rejoice and be glad in it. Psalm 118:24

That is my favorite verse. Thankful that no matter what, His mercies are new every morning. And here two years later, Jacob had a good day from start to finish. I can certainly rejoice in that!