“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.