Vacation Exasperation

Last week I shared about some sweet vacation memories. I referenced one that didn’t bring back good memories. Actually brought back crummy ones.

The way it played out was interesting in that Jacob’s behavior wasn’t unusually different. He was pretty much being ‘himself’. It was just considered ‘inappropriate’ by the viewing audience under the circumstances. And, upon reflection, the one trip that could probably be blamed as the main reason I came to dread going anywhere ‘new’ with Jacob. The entire trip wasn’t ruined but I let everything that happened involving Jacob totally dampen my memory.

When Josh was a tween and teenager, we’d let him invite a friend to vacation with us. One summer he and his friend were going to camp out a few nights while Mike, Jacob, and I had reservations in a nearby resort area with cabins. We had learned from some previous trips that cabins are a better choice than a *hotel room.

The first evening there we went to a restaurant to eat. Mike, Jacob, myself, Josh and his friend. We took Jacob in his wheelchair knowing that sitting at a table in a restaurant was probably going to be difficult for him but I felt we could manage. Turned out my optimistic attitude quickly unraveled. Taking him in became a bad, bad decision. One I realized I shouldn’t have considered possible. He was agitated, frustrated, destructive, loud … The stares were awful. Whispering. He was disturbing everyone in the dining area where we were seated. Hindsight tells me it probably wasn’t as awful as I remember. I just knew it bothered me greatly and felt like my whole family and our guest were affected negatively. It wasn’t worth staying so one of us left with Jacob for the rest to finish the meal. That was hard. People don’t mean to be cruel but you feel like they are thinking ‘can’t you control your child?’ ‘you are ruining our evening!’ Don’t worry, our evening was ruined as well. Those times, those memories are sad.

Word to the wise—if you find yourself a spectator in a similar situation, respond with love. Use it as a time to teach your children that some people are different. Ask if there is anything you can do to help. Be nice. Be kind.

The last night of that same trip, Mike, Jacob, and I had to stay in a *hotel as the cabin was booked. I was on edge from the time I walked in the room. Could not help it. Jacob doesn’t understand, or if he does, won’t obey simple instructions such as, ‘please be quiet’ or ‘use your inside voice’. Just because he is non-verbal doesn’t mean he is quiet. No, quite the opposite.

That evening, he listened to music and I was constantly turning the volume down. That is one thing he will usually do when asked, but literally 30 seconds later he pretends we aren’t paying attention and turns it up, maybe even louder! I was trying really hard not to disturb the guests on either side of us. Praying he’d tire and fall asleep early. He did settle down and slept okay.

The problem started the next morning. He awoke with a start and from the minute his eyes opened he was LOUD. LOUD! And not the sounds of happiness and enjoyment, humming in his own way. He was fussing. Deep guttural moaning. Did I say LOUD? It wasn’t long before he had obviously disturbed the guests on one side of our room. Separated by two sheets of sheet rock, someone banged on the wall. Then started calling our room and hanging up. Banging the wall some more. And it seemed the more they did, the louder Jacob got. I just knew any minute the hotel manager was going to pay us a visit. I was frantically packing our things as quickly as I could to get out.

Mike decided to step next door and explain that we were sorry but Jacob couldn’t help it and we would be checking out soon. When he knocked, a teenage boy answered the door, and it seemed before Mike could even finish his statement, the wise young man said “my sister is an idiot!” When I heard what he said, I could have hugged that teenager. Disclaimer: I don’t like the word idiot. Or stupid. None of us should call our siblings (or anyone else) an idiot but his reaction was an unspoken apology that truly decreased my stress several notches. As we checked out, they passed us in the hall and for a brief moment I saw embarrassment and understanding on the girl’s face.

Those few minutes cured me of agreeing to stay in a hotel with Jacob. I realize something like that may never happen again. But, I haven’t been willing to find out.

The moral of the story is: you never know what is causing someone to behave in a way you don’t understand. Err on the side of empathy and your kindness will go a long way towards lessening another’s pain.

Vacation Evaluation

It’s the middle of summer and if you haven’t been on vacation yet, you are probably dreaming about one. I started mentally evaluating our vacation history. When I think about vacationing with Jacob I automatically feel stress. Part of that is all the planning that goes into a trip. And all the uncertainty. When you have little ones, you end up packing ‘everything but the kitchen sink’ because you never know what you might need. For some reason, I have approached taking a trip with Jacob like that all of his life. We didn’t aim to take a vacation every year but we made an effort to get away fairly often.

VACATION: an extended period of leisure and recreation, especially one spent away from home or in traveling.

STAYCATION: a vacation spent at home and involving day trips to local attractions.

NEARCATION: taking a vacation to a location relatively close to home.

But when I took time to reminisce, there were many great memories!! Really only one that stood out as bad and I’ll tell about that next week. My mind goes back to the times we vacationed when our boys were young. Traveling with Jacob is easy more times than not. By traveling, I mean the ride in the car or van to and from the destination. That’s his favorite part.

For many years HIS place was the front seat passenger. He loved it and we let him have that spot. That was back when all vehicles had a cassette player. Jacob was in charge of the music. We might as well enjoy it! There were certain songs we’d hear, what seemed like thousands of times, before he’d tire of it and pick another one to repeat. Such as, I’m My Own Grandpa, John Jacob Jingleheimer Schmidt, and It Ain’t Gonna Rain No More, to name a few. Hearing them over and over again brought him so much joy. He was the co-pilot until one day that became dangerous (another blog post for another day). So, often the best part of a trip for Jacob was the ride.

We tried a few beach trips. Jacob didn’t love the sand but he’d find something to entertain himself. Recollections from his toddler years are sweet.

One beach vacation led to the scary moment when Jacob walked out of the hotel room alone. LINK: https://problemfreephilosophy.blog/2019/01/17/run-away-pain/
But we counted it as a great vacation. My brother’s family went with us and with our boys together, it was a blast. Jacob mainly watched video tapes in the room. That trip it seemed Fun with Music was his tape of choice. And his song of choice was Why Should I Worry from Oliver and Company.

Why should I worry? Why should I care? I may not have a dime But I got street savoire faire!

That trip, THAT song was stuck on continuous loop in all our heads!! And it’s a good policy to adopt. In the same category of Jacob’s problem free philosophy. Scripture cautions us against worry. Jacob reminded us of that, even though none of us had street savoire faire!! Or even knew what it was!!

We also took some mountain vacations in Tennessee, New Mexico, and Colorado which were all enjoyable. Both in the summer and in the winter with snow on the ground. He has been on some exciting trips making great memories.

For one of the Colorado trips we had a portable DVD player in the van (before vehicles came with built-in players) and he watched Cat in the Hat no less than 48 hours total. Which, you guessed it, we heard it and had all memorized every sentence. The sun did not ____, it was too wet to ____, so we sat in the house all that ____, ____, ____, day. I bet you can fill in the blanks if you’ve heard it repeatedly!!

And then there were trips to Disney. Were we crazy???? Disney = crowds! Why would we expose ourselves or Jacob to that nightmare? Many years ago I had heard that Disney worked extra hard to accommodate those with disabilities. Prior to our trip, I contacted a representative and got the information we’d need to essentially fast track. Which meant short wait time for rides and front row viewing at parades.

It was wonderful! Each Disney employee we encountered truly went above and beyond to help us. One trip was especially great because we let Josh invite a friend, PLUS we took my 82 y/o grandmother. Jacob was 19 then and he and my grandmother rode in wheelchairs. Although both were mobile, it made it easier to move around the park quickly. It was a fantastic trip for everyone.

Jacob has never been on an airplane or cruise around the ocean. But, I think the trips he has taken, have left him with wonderful memories. One place, in particular though, is probably his favorite. For many years, my family had a place in the country about an hour from our home. It wasn’t fancy and didn’t offer any spectacular things to do. It was just somewhere to go and relax. Often Jacob would get out his suitcase and we knew exactly where he wanted to go. We’d have to avoid talking about it in his presence until we were loading the car because he was ready to leave the moment he knew what was about to happen whether we were packed or not. I’m sure when he thinks about trips he has been on, his mind goes there first. Given the choice, I think he’d vote for a nearcation.

In all of this, I’d encourage families to just try. One of our Colorado trips, I secured a sitter through an agency prior to our arrival. There were a few outings Jacob wouldn’t be able to participate in that made hiring someone to help out a wise decision. Get this – the scheduled sitter had reviewed my notes about Jacob’s likes and dislikes and walked into the condo with a dozen fresh eggs from her farm. All because I listed scrambled eggs as something he loved. That’s part of my sweet memories of taking a chance and being so glad I did!! My regrets involve too often taking the easy way out and not exposing Jacob to more. Go where you can, when you can, and make memories! Vacations don’t have to be abroad. Be intentional about spending time with your family. Who knows? You may learn all the words to someone else’s favorite song or movie!!

The BIG 4-0

Jacob Michael Pigford arrived on 7-9-79 at 4:43 PM.

And our lives changed forever. For the better. Just like no one can really understand how great being a grandparent is until you are one. I couldn’t imagine what being a mom was going to be like until I became one. It’s the one thing I really wanted to ‘be’ when I grew up.

Last week’s post was about the first twenty or so years. Even though by then Jacob should have graduated from high school, we were still more or less in a toddler stage. A tall toddler. Puberty hit and it was hard but we made it! There weren’t big family birthday parties every year. And many, many years I forgot to even take a picture of him or us together. We celebrated by singing Happy Birthday and Jacob opening a few presents. Some years instead of a cake, he had favorites like brownies, donut holes, Monster Cookies, or cinnamon rolls. Each year he had some sort of musical toy as one of his gifts.

Below are some pictures of a few birthdays from the last twenty years. A note about one of the images below, the one where Jacob is on his bed and Mike is reading to him. I had commented on Facebook about it being Jacob’s birthday. We were overwhelmed with the number of friends that sent Happy Birthday greetings to Jacob. That night, Mike read every single comment to him while Jacob laid very still, taking it all in. Listening to every sweet wish. It was a precious moment that brings back teary eyes.

Seems once Jacob hit ‘adulthood’, I became better able to cope with passing years. The markers were no longer a factor but there was that reminder that as he was getting older, so were we. Cruel reality. It is a hard fact of life for families with special needs. The huge question, what will happen to them when I’m gone? Knowing none of us can predict the future, I’ve been able to take one day at a time.

When Jacob couldn’t handle the crowd of the *Joy Prom back in the spring, Mike made a comment about ‘he has us’. It was right then and there that I realized we could have our own dance party. This year was one of those decade birthdays for Jacob. It had been many years since he’d had a party so this seemed like a good year for a big one. Family, teachers, and his main sitters were invited to the celebration which took place the Saturday before his birthday.

Party Time!!

Jacob is turning 40!
We hope you can come, we most certainly do.
No presents are necessary, he’d just like to see you.
A simple party with music to twirl and dance.
If you’d like to shake a leg, now this is your chance.
We’ll sing Happy Birthday and give him his space.
Hoping the party will put a smile on his face.

Jacob’s mom

His Mamaw said, ‘I think we will always think of Jacob as young and little.’ And she is right. No way could my first-born already be turning 40. Ready or not, he is and we celebrated how special he is to so many people! Friends and family came just for our boy and he loved it. While I didn’t get pictures of all the friends and family that came, suffice it to say, I couldn’t have hoped for a better turnout for Jacob. From 2 years old up to 84, he was surrounded (as close as he will allow) by hearts of love. It was absolutely perfect for him.

We got there early to set up with balloons, some of Jacob’s favorite foods, and fun music. One of Jacob’s sitters went with me to keep him occupied and entertained. We brought his wheelchair and it worked perfectly to zoom around the building while the party room came to life. When he was given the opportunity to just roam where he wanted, we quickly realized he was aiming to escape. Remember, autism doesn’t typically love to be the center of attention.

Once everyone arrived, he was hesitant to come in the room. Seemed to prefer to stand in the hall and peer in. I decided that he’d join us once we started singing Happy Birthday. Surely, he couldn’t resist that. So, his Sunday School teacher starting playing the piano and we started singing loudly all toward Jacob in the hallway. I was wrong. Our singing didn’t lure him in to a cake with 40 candles burning. Yes, we sang to him from the party room while he was out in the hall leaning against the wall amused at our chorus of smiles. It was sooooooooo Jacob!! Once the commotion settled, he came back in and twirled at the end of the room to music his dad had downloaded. He had his own space and could enjoy the party goers from a distance.

And then the PRESENTS! He loves to open presents. It was hilarious. He’d throw tissue paper over his shoulder and quickly pull out the bag contents and move on to the next. He got so many fun shirts, a Kalimba (thumb piano), new MP3 player, and candy, chocolate, candy, chips, and more candy. Somebody Everybody knows Jacob loves candy!! And get this – one was a bag of Macaroni and Cheese Cheese Puffs. Yes, his guests knew his tastes! Again, it was perfect. My heart was overflowing. His celebration was fun and I do believe he loved every minute of it. Thanks from the bottom of my heart to all of those that made it so very special!!

The day of Jacob’s actual birthday, he got to stay home, sleep late, play music, bounce on his bed, and watch TV all day. That morning we sang Happy Birthday with a single candle in Applesauce Muffins (a favorite). Then that evening, I made Macaroni and Cheese and in went more candles. Mike and I plus two granddaughters sang Happy Birthday a second time! Perfect ending to the Jacob Michael Pigford four day celebration!! Josh’s family gave him the fun jar (they made) full of yes, candy! Plus the shirt, which may be my favorite shirt ever and sums it up so well. I am so glad he is mine! So very thankful Jacob has been loved so well for 40 years and I have no doubt that he felt it in a big way this year as did we.

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17 NIV

*Ice Cream is Good Medicine – April 2019 post https://wordpress.com/block-editor/post/problemfreephilosophy.blog/565

Birthday Boy!

Jacob’s birthday is a week after mine. The summer I was expecting him, my parents gave me a birthday card and in it my mom had written, “today or someday very soon you will be a mom and you’ll know the joy you’ve brought to us.” Eight days later I was handed a 7 lb. 15 oz. beautiful baby boy and was truly overcome with joy. We were young and naive but definitely oozing with love. Giddy over our son.

As most parents do, probably all first-time parents, I began to watch for milestones. Communication, Sensory, Motor, Feeding. Jacob met some but was basically delayed overall. Before his first birthday I was concerned and questioning his pediatrician. By his second birthday we knew. Our fears were confirmed – there would be major delays.

But, delays didn’t matter, we celebrated birthdays BIG. I took a cake decorating course because I wanted my children to have FUN cakes. Special moments and wonderful memories. Both of our families lived nearby and they were all invited to shower Jacob with love. And they did! With love and loads of presents. They enjoyed the parties and Jacob enjoyed them more.

As he got older though, I used his birthday as a marker for what had or had not been accomplished. And frankly, it was depressing. Some years I could see no improvement in any area. He was stuck mentally with no verbal language. He could understand us and follow through on some things. I would try my hardest not to let it get me down. He deserved to be celebrated!! And yet, there was looming sadness. Guilt smothering me. I had a wonderful son we all loved deeply and nothing made me happier than to do something for him. Still, I wanted so badly to prove the doctors wrong. Surely they made a mistake.

I don’t remember what year but I finally went to my family doctor as I could not shake the low spirit taking over. While I spoke and tears ran down my face, he suggested I had seasonal depression. It had nothing to do with the ‘seasons’, as in winter, spring, summer, fall – but the season in my life reoccurring each year. By April I’d start feeling the gloom, I dreaded Jacob’s July birthday. Couldn’t accept him being another year older with no progress to note. I was prescribed an anti-depressant that I didn’t want to take but was desperate to get out from under the dark cloud. And, as Dr. W predicted, it did help me get through those few months. Once his birthday had passed I could move on, wean off the med and everything return to ‘normal’. And try as I might, by spring of the next year no matter what I did to prepare—positive self talk, prayer, reading, confiding in a friend, therapy, gratitude journal, etc. I’d need to get back on something. I was ashamed. How could I let a birthday, Jacob’s birthday, depress me terribly? I could not help it and couldn’t help it for a number of years. A roller coaster of emotions knowing what I needed to do but every year hoping I could avoid medicine to cope.

I share this now for you, my small blogging audience, to get a peak into what an adorable child blessed our lives in the summer of 1979. Looking back at these pictures reminds me of all the fun. Goodness God gave us the most awesome gift. And we were surrounded by such supportive families. But also, I want to speak to those who struggle with depression, whether seasonal or not. Don’t let it stop you from enjoying the blessings. God is able to hold you, to carry you when you can’t walk. Look around and accept His open arms. You are not alone. And you are not the only one who may have dreaded another special event. God understands.

I wasn’t able to locate pictures from every year of Jacob’s first two decades but hope you’ve enjoyed these, even those poor quality ones! Stay tuned for next week’s post – the birthday boy celebrates a BIG ONE!