I Haven’t Forgotten

And doubt I will. It’s like this, in Jacob’s lifetime we have been blessed with so many people who have supported us in beautiful, memorable ways. Truly I am blown away by the kindness and goodness of those around us who love us without limits. Cherished is what they you are.

And while we have both received authentic encouragement and valuable wise counsel, some words have been so powerful, they will not be forgotten. This spring we attended an event where the emcee listed the many people who had made the evening possible. There was a round of applause in appreciation of their efforts and the concert continued. At some point later, he returned to the microphone and said, “well, I forgot to name one person, perhaps that is why you shouldn’t thank anyone.” Laughter erupted and the one person not mentioned earlier got their own round of applause. All of that to say, this is not an all inclusive list of people deserving a thank you. I would most certainly forget someone! Today’s post is about three friends who have made a difference in my life. Beautiful thing is, they did it without even trying.

I’ll start from way back over 30 years ago. One of our neighbors had 3 young children and I had two. She was at our house one day and I was frustrated about Jacob (who was no longer a toddler) eating with his hands instead of using a fork. He was absolutely not interested and I was not making any progress. She kindly said to me, “you know it’s okay if he eats with his hands. Whether it is pancakes with syrup or green beans. Let him do it. For your own sanity.” Goodness I needed that. Obviously I wasn’t seeking permission but what a gift to be reminded that my sanity was important. It was probably one of the first times I considered that taking care of myself would help me provide the best care for my family. Through the years I haven’t forgotten that comment and no doubt that friend is part of the reason I am somewhat sane today.

Next. It was 2006 and I had an appointment with my pastor. We were meeting to discuss an upcoming wedding that he would officiate. I came with my prepared notes to make sure he knew the outline and plan. The details were covered and I gathered my things to leave. And then he surprised me, “what’s it like? What’s it like to have a son like Jacob?” A simple, simple question. One I struggled to answer. Not because I couldn’t, but because I didn’t recall anyone every asking. In those words. I was almost left speechless by his sincerity. By his curiosity. By his genuine heart. By his willingness to ask a question that others have no doubt wondered but were hesitant to voice. To this day, as I type this, I am reduced to tears. This blog wasn’t born from that question but is pretty much an answer to it. I have expressed my appreciation to him for his interest in my family. It is a question that touched me deeply. It is a question I haven’t forgotten.

And more recently – a long, long time friend has blessed me through the years with short, unexpected Facebook messages. This friend and I grew up near each other in a great neighborhood where days were spent riding bikes, playing kickball, and walking to school. Endless games of chase, boys against girls, and tattle tales (as I’m often reminded). The kind of childhood you look back and say, ‘those were the days’. Every now and then I’ll get a message from this friend that basically conveys, ‘you can do it’. And as God does, he uses my friend to send me those just when I need them. A recent message, though, went straight to my heart. Part of it said, “You don’t fully appreciate how rare you are, and how qualified YOU are for YOUR life.” Okay people. I am sure you’ve read enough here to know how unqualified I have felt at times when it comes to raising Jacob. What mom doesn’t have those feelings? Tears flowed. I will never forget those words of encouragement. Healing words to my soul.

As mentioned earlier, there are hundreds of people in our lives that have cared for us over and over again. Those have truly been the hands and feet of Jesus and I am forever grateful. In being real and honest about what autism looks like in our family, I put myself in a vulnerable position. Part of that is in hopes of helping others. And honestly, part of it is therapeutic. The comments received through Facebook, texts, emails, and even sweet notes in the mail, are each an amazing gift. Each are so very helpful and so very appreciated. You never know when a comment will become etched in one’s mind. Your words may be exactly what someone needs to hear whether you realize it or not.

Lord, I remember what you have done. I remember the amazing things you did long ago. I think about those things. I think about them all the time. Psalm 77:11-12 (ERV)

Through blogging, I’ve learned that putting stories on paper helps me to see God’s hand over and over again. I think about how He has used you to speak love and support to me. I wish I could thank everyone that has touched my heart both knowingly and without awareness. Please know that I hold comments closely and they are fuel when I’m running on empty. Thank you doesn’t seem sufficient but it is what I have to offer.

“I Don’t Like That!”

I have been known to totally change my plans to allow Jacob to stay home with me on a rainy day. If it is simply spotty showers, that is one thing and I don’t let that stop us. But, if it is a deluge and going to be stormy, that’s another story all together. Apparently weather can have a negative (or positive) affect on our days. It is believed that joint pain, head aches, depressed mood are all on the increase on gloomy, rainy days.

I’ve never been positive if Jacob is bothered by the weather but some indications are he is. I think barometric pressure is a real thing and seems it can influence his mood. Once, I was on my way to meet a friend for lunch on a particularly stormy day, I got a call from the director of the day program Jacob attends. He was having an unusually bad day and they had not been able to figure it out or do anything to calm his mood and shift his focus. That day, I really felt like the weather did a number on him. And is part of the reason I like to let him chill with me during threatening weather.

Jacob has some odd aversions when it comes to rain. He will not wear a hat. He will not wear the hood on a rain jacket. Nor does he want someone to hold an umbrella over his head. Go figure. Now obviously, I can just let him get soaking wet. But NO. I really can’t! However, the positive side of that is, he will walk faster than normal to get out of the rain. Jacob doesn’t really run, but his pace from the van to the building on a rainy day, almost puts him in a sprint. Staff at his day program get tickled at the speed he exhibits to get out of the rain.

Another reason I try to keep him home when we are facing a high alert weather day is I don’t want him away from me if a tornado warning is issued. I know, I know. Moms just want their chicks nearby. I love a rainy day, IF my loved ones are home with me. Weather warnings or fire drills with dozens of special needs people can be tricky. Some are compliant and will follow orders. And some won’t. You guessed it. Jacob is in the ‘won’t’ category. I don’t want to put his life or a staff member’s life in jeopardy because he refuses to comply in an emergency situation.

I am so thankful that weather forecasters these days can help us better prepare for serious outbreaks. To be able to hear where a storm is headed down to the streets in a neighborhood, is super helpful. Only God knows the weather pattern, but through technology they have more at their fingertips to help keep us safe.

Home page on his Go Talk. Each button is linked to other pages.

Recently, I kept Jacob home because the forecast looked really threatening. Our weather radio went off NUMEROUS times that day, tornado watch, flash flood warning, severe thunderstorm, etc. At one point, our county went under a tornado warning. According to the news, it looked like it was headed toward towards us. Our neighborhood siren went off. I knew I had to get Jacob into our safe place. I grabbed his shoes, his iPad, a favorite toy, and DVD player. I secured our two dogs near us then Jacob and I went into a large closet. I grabbed a folding chair and sat in front of the closed closet door. Praying the tornado would pass without touching down and we wouldn’t be ‘imprisoned’ long.

For a few minutes, Jacob sat on the floor playing with the musical toy. Then he decided he’d been there long enough. He kept reaching for the doorknob behind me trying to open the door. Seeing he wasn’t making much progress, he sat back down on the floor and grabbed his Ipad. It has a program on it called, GoTalk. Jacob uses it randomly for communication. It has numerous pages of buttons he can push to ask for an item, express how he is feeling, see pictures of family and friends and more. The buttons are programmed with a male voice to match the picture, word, or phrase.

He hurriedly found a page and pushed a button, “I don’t like that.” “I don’t like that.” “I don’t like that.” “I’m sad.” “I’m sad.” “I don’t like that.” Over and over again. Bless his sweet heart. I told him I didn’t like it either and was sad we had to wait out the storm. Overall, he was a good sport, only trying occasionally to see if he could get pass me. Unfortunately for him, “I don’t like that” and “I’m sad” were not the passwords needed for freedom. Thankfully, the warning was lifted without incident and his sadness turned to joy that he wasn’t imprisoned in a closet with me any longer.

It certainly isn’t the first time we’ve been under a warning and had to get in the closet. It is the first time he’s been able to ‘say’ what he thought about it!

Dearest Juliet

A while back I wrote a post about the sitters in our life. https://problemfreephilosophy.blog/2019/02/07/at-your-service/
It was a tribute to those that have been a wonderful blessing to us. And provided much-needed service and respite to our family.

I didn’t go into detail then about the very first sitter sent to our home by an agency. She deserved her own post. Dearest Juliet arrived at our home with the flair of Mary Poppins. She had the most beautiful spirit and smile and laugh. She put me at ease right away. And Jacob was drawn to her for multiple reasons. She was raised in England and never lost her accent. He’d reach for her mouth to get her to speak just to hear her voice. We would often joke that he liked her more than us. Notes and information on Jacob were kept in a red notebook that was provided by the agency. Sitters were to use it to document their time in our home. It wasn’t unusual for Jacob to hand us the red notebook and show us the door. Clearly wanting us to leave and his favorite nurse to take our place.

Tragically, Juliet was stabbed to death in her home eleven years ago. She lived alone with few earthly possessions. After her death, Mike and I, another special needs family, and a couple of her friends cleaned out her home. It was something we could do for her as she had done so much for us.

Her death shook me to the core. I’d lost grandparents and a best friend. But not through murder. I became afraid. I’d sit in a recliner and work sudoku puzzles for hours. Insomnia sunk in. I couldn’t concentrate on anything. How in the world would Jacob grieve his favorite nurse? Evil is in the world and he was about to be affected directly. In cleaning out her home, we collected photos and made an album for him. One he still pulls out every now and then to remember. It gives us a chance to talk about how much we miss her. She had lived an interesting life with much excitement but also much hardship and tragedy. More than once I suggested she move in with us. That is how much we loved her and considered her family. She was gone way too soon but was a believer so we are assured we’ll see her again one day.

It was late afternoon on a Wednesday when I got a phone call from the agency that employed Juliet. “Terri, sit down, I’ve got some terrible news.” Frantic to remember everything about her, I wrote the poem, “She was His Nurse”. Too overcome with grief, I could not read it at her funeral. However, years after her death, I was asked again to read it in public. This time at the trial of the two young men that broke into her home, stabbed her over thirty times leaving her to die and then stole her car. It was hard. So. Very. Hard. But I was determined to stand up for her for all the times she stood up for Jacob. They needed to hear what they had taken from us. From the community. From the world.

She wouldn’t want to be called an angel but she seemed like one to us. Dearest Juliet, you are not forgotten, my beautiful friend. Dance with the saints, rest in heavenly peace, and worship the King.

The Guessing Game

One of THE most frustrating elements of having a child with no verbal language is the guessing game. When you cannot figure out what they want, what they need, how they feel, where they hurt, it can become terribly overwhelming. After this many years, I can often ‘read’ Jacob and then there are obvious signs that go along with a headache, bad sore throat, etc.

But, there are also those times when something will happen and I have absolutely no way to figure out how or what. He’ll get an awful scrape on his arm. Was he trying to reach for something behind his dresser? Did he fall? Or a nasty bruise will show up. We can all have a bruise appear and can’t figure out what caused it. My instinct just doesn’t want him to be hurt or have had awful pain. I feel like the answer to most of my questions is, ‘I don’t know and don’t even have a clue.’ Oh, how I wish I did. I can only guess.

This is how we all felt that day!

Recently Mike went in to check on Jacob early one morning as he does every morning between 5 and 6. He discovered Jacob had been sick during the night. My heart sank. I felt so sorry for him. Parents, you know that feeling of walking in to realize your child (often still in a crib) had been sick during the night. Talk about an awful feeling. I felt so very sorry for him. When your child is sick, so are you. That’s just the way it is.

The afternoon before when I arrived at his day program, a staff member walked out and said, “Jacob, was feisty today.” Interesting word and not often used to describe my boy. When we got home, he didn’t want a snack. Then he wouldn’t eat anything for supper. Both of those aren’t completely unheard of with Jacob. Unusual but doesn’t make me think, ‘oh no, he is sick.’

But, bless his heart, he was indeed sick. He apparently had a stomach virus that was really hard on him. Therefore, hard on us. I convinced Mike to go on to work. “We’ll be fine,” I said. And at the same time saying to Jacob, “it’s going to be okay.” Turns out, we weren’t at all okay and within a couple of hours, I called Mike to come home. That’s how rough it was. Without going into the messy details, suffice it to say, the washing machine ran non-stop that day (and the next). And, there was a lot of cleaning going on of everything and person in sight! Everything.

Feeling crummy meant it was hard to get him to drink much. I didn’t give up for fear of dehydration and thankfully, was able to get him to drink enough water and diluted juice (he will not drink soft drinks) to ease my mind at least a little. Was he going to be sick again? Oh, the guessing game. He was pretty quiet all day, watching some TV and listening to music. There is a saying – Give a sick man medicine. Give a sad man, music. Seemed the virus had to run its course but I think the music helped his feelings.

That day if I said “bless his heart” and “I feel so sorry for him” and “it’s going to be okay” once, I said it a dozen times. I just cannot stand for him to be sick. Fortunately as the day went on, I could see him perk up. He decided he would eat a little and moved around the house more. Good sign.

Knowing he had not slept good the night before and he hadn’t slept during the day, I wanted to get him to bed at a decent time. It was a pretty exhausting day and felt we all needed an early bedtime. Around nine, I started to his room and told him it was time to get ready for bed. What happened next, was fantastic and quite comical.

As I approached Jacob, he pushed me, using both hands, back into our den. He showed me the recliner and made me sit in it. He handed me a blanket (to get comfortable and cozy). He pulled the lever on the recliner to make sure I was nice and relaxed with my feet propped up. Once he was satisfied that he had thwarted the bedtime mission, he went back to his room, closing the hall door behind him. NO KIDDING! I laughed out loud. Little rascal was definitely feeling better. Thinking that was such a clear signal, I had to grant him an extended play time, so Mike and I sat in the den talking. A few minutes passed and Jacob eased the hall door open and ever so slowly peeked in to see what we were doing. Then he hurriedly closed it and went back to his room.

Bless his heart. Obviously, he was NOT ready to go to bed and wanted me to chill out while he played a while longer. I didn’t have to wonder and figure that one out. The day ended without another round of the guessing game. And Jacob had put a smile on my concerned face and sick heart.

The Go-To Gal

Mother’s Day is coming up soon so I volunteered to write something about Jacob for this blog. I’m better at writing short smart aleck comments on Facebook, but I will give this a try.

Jacob loves both Terri and me, but I suspect he favors her a bit more (okay, a lot more). Why? Cause she’s the ‘Go-To Gal’. He knows she will take care of his needs. She has always been the one to keep thinking what we can do to make Jacob’s life just a little better. If there was some treatment that she read might help, she would push for us to try it. If the school or the day program needed to tighten up, she would (or sometimes have me) let them know it. She’s the glue that holds our family together when it comes to Jacob and I am thankful for her. It’s been a journey that I wish we didn’t have to make. But Jacob, I’m sure, is glad that he has had his mom to be his ‘Go-To Gal’ to take care of him.

Heading out!

My gift to Terri in the last year, to give her a break from Jacob (and me), is planning guy trips for us to visit different State parks in Mississippi. I reserve a cabin for a weeknight, since it does not require a two night stay like on the weekend. We load up with all the necessary junk food needed to survive for a day and drive to the park (which is probably Jacob’s favorite part of our adventure).

Once we arrive, Jacob will usually grab the bed he wants and have me turn on the TV. He’ll start playing with his toys and watching TV, if there is something on that strikes his fancy. I think he just likes the idea of being in a different room than his bedroom.

I will usually go outside and just stare at the park lake until the sun goes down. Sometimes he will come outside and get me to walk around the cabin and then head to the car. Yep! He may decide before we have spent the night that he is ready to go home to his room, his bed. I have to explain that we are staying for the night. He usually accepts this and heads back into the cabin to resume playing.

He picked the one near the window.

When bedtime comes, we each have our own double bed. For some reason, he prefers for me not to sleep in the same room with him. Maybe, he believes Terri’s accusations of me snoring are true. (I don’t snore but in honor of Mother’s Day, I’ll let Terri think she knows what she’s talking about.) Either way, he will get in my bed and politely try to pull me out of the bed and into another room. In many cabins, the only other room is the kitchen which I prefer not to sleep in. I have to convince him that I am not going anywhere and he FINALLY accepts the fact that I am not leaving.

All in all, I think and I hope that he enjoys our outings. From what the Go-To Gal says, it has been a gift of needed respite for her. And I know I enjoy it because we’re getting to do something together as a Father and his son.

Thanks for letting me share a little bit about my life with Jacob. I look forward to Terri resuming the Blog posts!

Out of Nowhere

We all have situations or circumstances where something happens and emotions buried deep come bubbling to the surface. That often happens when we are going about our business and something or some one will remind us of a loved one or a friend who has died. Or perhaps a traumatic event we’ve tried to forget. Before you know it, we’ll go back to feelings of pain and sadness that seem to have come out of nowhere.

When I was pregnant with Jacob, another couple that were close friends of ours were also expecting their first child. Our due dates were close and it was nice sharing pregnancy stories with each other. Jacob was born the 9th and our friend’s daughter was born seven days later on the 16th. We lived in the same neighborhood and were members of the same church. We hung out a lot together. I considered her Jacob’s first friend. They were side-by-side buddies in their strollers whether we were window shopping at the mall or navigating an outdoor flea market. Good times and great memories.

With Jacob being my first born and not having much contact or experience with babies and toddlers, I have to admit there was some comparing of developmental milestones on my part. But not much. I accepted the age-old explanation of girls just develop faster than boys. As time passed, we left the neighborhood and that church. Mike and I searched out a church to meet our needs. The friendship remained but the contact lessened. Several years passed, and then, to our surprise and delight, they started attending our church and got involved. By then Jacob was going to the Special Ministries class so he wasn’t in groups with his first friend. But us parents picked up right where we left off and were able to enjoy our families seeing each other more once again.

Through the years I watched as kids Jacob’s age participated in everything from academics to sports and to Bible Drill. And although there was a twinge of sadness that he wasn’t able to do those things, I could genuinely celebrate accomplishments of others his age. Until one year. It was 1997 and he would have been graduating from high school. His first friend, born a week after him, would be graduating.

Our church does this really great thing called Senior Recognition Sunday and that includes a Hall of Memories for graduating seniors. The students are celebrated with a meal, an opportunity to set up a booth with their memorabilia, a worship service where they are applauded and challenged. The church bulletin has pictures of the graduating class from that year. It is a well deserved, great day.

On a May Sunday in 1997, we sat down in the Sanctuary where we always sat. I knew it was Senior Recognition Sunday. I knew if things had been different, Jacob would have been ‘one of them’. As the service started and the seniors started processing down the aisle and to their designated seats, I was hit hard. HARD. It felt like a semi-truck of emotions barreled over me. OUT OF NOWHERE. Tears started pouring down my face. I leaned over and told Mike that I needed to leave. He motioned for Josh to come and picked up Jacob from his class. I was sobbing by the time we got to the car. They were bewildered. I couldn’t even get out why I was crying. We were part of the way home before I could speak, “It made me so sad when I saw Amy walking in.” “Jacob should have been part of that group.” That day I cried a lot. If I had any idea I was going to be so overcome with emotion, we probably would have stayed home that day. But I didn’t. Out of nowhere.

Milestones that won’t be reached can stir up such sad emotions. That is normal and that is okay. I had a pretty hard time when that same young lady was about to get married years later. Thankfully when feelings come out of nowhere, God is there and understands. He wipes my tears and mends my heart.

Buckle Up for Safety

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.

Auto Belt Lock

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.


Ice Cream is Good Medicine

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.

I Would be Proud

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.

Autism Awareness

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!