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.

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.

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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.

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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!!

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

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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

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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!!

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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

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.

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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.

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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.

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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!

Jacob really has no self-care skills. We have to help him in all areas. Two of those are brushing his teeth and shaving his handsome face. It is a really great day when he is cooperative and those can be done sufficiently by either me or his dad. Seriously, it feels like I’ve won a major award and he deserves a trophy! Typically he resists in every way he can and it requires a team approach. And, sometimes Jacob still gets the best of us more times than not. We are definitely hands on. Both hands. Need more hands. Anybody give us a hand?

Recently we had a problem. On the very same day we, the parents, became ‘afflicted’. I woke up with poison ivy on both arms. Specifically concentrated around my wrists. Then while Mike was walking our golden girl, she spotted a cat and as she yanked the leash, it wound around Mike’s finger causing a spiral fracture. His hand looked awful and felt pretty bad, too. As a whole neither of those problems would or should keep us from doing most anything. In the scheme of things they were minor. But when it comes to Jacob, they felt major.

If you’ve read much of the blog you’ve probably seen more than a time or two mention of the fact that Jacob will strong arm me. Could be out frustration, fear, stubbornness, anxiety … who knows? It just means when he is trying to keep me from doing something, he will grab my wrist (ouch! poison ivy!) and squeeze, digging his fingers in, and lock his arms to keep me from accomplishing the task at hand. Often to remedy that situation, Mike has to intervene and hold Jacob’s arms so I can continue. This is mainly when it comes to the above mentioned shaving and brushing teeth nightly routine.

Realizing we were both practically out of commission, Jacob had us right where he wanted us. The honest truth was he got lucky and we didn’t force those two tasks because he would have inflicted pain on us purposefully or not. I was able to get him to cooperate a time or two but needed Mike’s help to really do a good job.

And then, it hit me. Maybe I could shave Jacob while Mike distracted him doing something he really loves. If that was the case we might all survive with no additional damage. So, as is Jacob’s habit most nights lately, he wanted an ice cream sandwich. Mike started helping Jacob and I turned on the electric razor. Have a bite, shave a little, have a bite, shave a little. It was pretty funny actually. I wasn’t able to give him a perfectly clean shave but I got him looking good enough that he didn’t resemble a hobo when he went to his day program the next day. I was super pleased we had gotten him presentable and no one suffered in the process.

Who would have ever thought to mix shaving and eating but it helped us when we needed it. Desperate times call for desperate measures so don’t go sending the sanitation police over here. It worked great that night, thank you very much. The idea popped in my head and it didn’t come from nowhere. God cares about the little details in our lives, you better believe it!

WE’RE IN TROUBLE NOW

I worked in the yard with watchful eye,
Poison ivy to be pulled from the fence up high.
Being as careful as could be, unfortunately it happened to me,
The poison spread on my covered arms, running free.
I’m in trouble came to my mind. Oh good grief!
I’ll need to quickly find some sort of serious relief.

He walks the dogs in the early morning,
A canine or feline may appear without warning.
Our dogs will not have it, their signal is clear,
‘Stay away, I’m telling you, do not come near.’
A jerk on the leash caused immediate pain,
A broken bone quickly registered in his brain.

My parents will have to take it easy he thought,
I’m sorry they’re hurt. But not tooooooo distraught.
Maybe for a few days they will leave me alone.
I’d hate to be the cause or hear them moan.
It didn’t last long enough I am sorry to say,
But ice cream while shaving made my day!

It had been years, YEARS, since we’ve taken Jacob to a movie theater. He loves music, colors, and animation. Typically, he gets plenty of that at home. The big screen is fun but not when you are worried about disturbing others around you.

Recently we learned that one of our local theaters, offers sensory friendly movies 1 or 2 times a month. Sensory friendly is advertised as lights up/sound down experience. You don’t have to sit through 20 minutes of previews before the feature you came to see finally shows. It is a relaxed setting for those with sensory sensitivities or other disabilities to attend without figure pointing. I so appreciate that someone decided that there was a segment of the population who needed and would enjoy that small change that could make a big difference.

We took Jacob to see Aladdin earlier this month. I knew it wasn’t animated but felt the singing and action could keep his attention. Being our first time, we got there early and planned to let Jacob just stay in his wheelchair. (Where he feels most secure.) While we waited for the show to start, he was very content. I was excited thinking of how great to have discovered something to do with him. Many families came in and most were a parent or two with young children. A perfect setting for a Saturday morning adventure.

Mike sat to Jacob’s left and there was a wide empty space to Jacob’s right. The movie started and Jacob was fascinated. I was sure I would spend more time watching Jacob than the movie. My heart was happy that he was so interested. About 20 minutes into the movie though, he got bored. First, he turned around and reached for the family in the row behind him. Mike quickly intervened and apologized. They were kind and not bothered. Mike moved Jacob’s chair up so he couldn’t touch them. Then Jacob decided he would bother his dad. He proceeded to pull on his shirt, his hair and do whatever he could to annoy Mike. Fairly quickly, Mike moved Jacob away from us to an empty space hoping he’d focus on the movie. Nope. Jacob strained toward the family in the row in front of him. At that point, we knew the movie wasn’t going to hold his attention and we didn’t want to wrestle with him for 90 minutes.

As soon as Mike told Jacob we were leaving, Jacob calmed immediately. Disappointed it wasn’t a winner for Jacob, we were okay, ‘at least we tried’. On the way home, Mike said they’d drop me off and then he wanted to just take Jacob for a long ride in the van. They both enjoy the scenery and it was a beautiful day to do it.

An hour and a half later, they came home. Jacob’s shoes were covered in dust, his face red, and he was sweaty. Not exactly what I expected from a ride through the country. Seems Mike decided to go to a nearby park and see if Jacob might like to walk around. And he did! They had thoroughly enjoyed their outing and Mike had made their own fun. The morning didn’t go as I expected but the end result was what I hoped. Jacob had a great morning!!

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I am so very thankful that Jacob has a dad who invests time in his life. Through the years I’ve known too many families where the dad literally walked away. Could not handle parenting a child who needed some extra attention. Not my man. On the heels of Fathers Day I want to say he is the best and exactly what Jacob needs. Yes, Jacob hit the jackpot when it comes to his daddy!

Jacob communicates in many ways. Actually, he is communicating in one way or another in everything he does. He has always loved music. The radio, a toy, a cassette tape player, CD, MP3 player, or a television program. He finds joy and happiness in tunes. I think we’d all agree music is a wonderful way to communicate.

Years ago, Disney produced a series called Sing-Along Songs. Pulling from different Disney movies, each was a collection of songs with lyrics printed making it easier to ‘sing along’. They came out on VHS tapes when he was about 10 years old and were perfect entertainment for him. I think we had every single one of them. Some of his favorites were Fun with Music, Zip-a-Dee-Doo-Dah, The Bare Necessities, and Under the Sea. There were a few that we bought multiple copies preparing for the day his favorite would wear out.

While Jacob might have trouble inserting a tape (cassette or VHS), he has no problem pushing buttons to operate the player. Fast forward, rewind, pause, and play. He was very adept and would often focus on one song or even just a phrase and play it over and over again. It was quite amazing how he knew exactly how long to hold a button down to get it to the point he wanted to hear. Not surprising as he has a great sense of timing.

One of his favorite tapes was the one titled, Under the Sea, featuring different songs with water themes. It had a couple of numbers from The Little Mermaid. When you hear something repeatedly two things can happen. One, it seems your senses are dulled and it gets to where you don’t notice it any more; and two, repetition can have the reverse effect and plant a song in your mind where you can’t get it out of your head. For the most part, I’m able to tune out, not really paying attention to what he listens to. Maybe I’ve had too many stuck in my head.

One day however, I realized how intentional he was being in his selection and repetition. It’s a favorite funny story about Jacob playing a phrase over and over again. Using the rewind button for one certain part. Our other son and his fiancée would often hang out at our house. They were in college in a neighboring town and it wasn’t unusual for them to spend free time with us. On this particular afternoon they were at our house and Jacob was happily playing in his room. Listening and watching a video while he danced. At some point I zeroed in on what he was repeating and the song went like this:

You’ve got to kiss the girl. Why don’t you kiss the girl? You gotta kiss the girl. Go on and kiss the girl!

Oh my goodness. It was hilarious. He was clearly giving his brother advice. And was going to keep on repeating it until he was sure it sunk in and he took action. Now I wasn’t monitoring the situation to embarrass them but Jacob was and he was trying to make a point.

There you see her
Sitting there across the way
She don’t got a lot to say
But there’s something about her
And you don’t know why
But you’re dying to try
You wanna kiss the girl
Yes, you want her
Look at her, you know you do
It’s possible she wants you, too
There is one way to ask her
It don’t take a word
Not a single word
Go on and kiss the girl
Sing with me now
Sha-la-la-la-la-la
My, oh, my
Look at the boy too shy
He ain’t gonna kiss the girl
Sha-la-la-la-la-la
Ain’t that sad
Ain’t it shame, too bad
You gonna miss the girl
Now’s your moment
Floating in a blue lagoon
Boy, you better do it soon
No time will be better
She don’t say a word
And she won’t say a word
Until you kiss the girl
Sha-la-la-la-la-la
Don’t be scared
You got the mood prepared
Go on and kiss the girl
Sha-la-la-la-la-la
Don’t stop now
Don’t try to hide it how
You wanna kiss the girl
Sha-la-la-la-la-la
Float along
Listen to the song
The song say kiss the girl
Sha-la-la-la-la-la
Music play
Do what the music say
You wanna kiss the girl
You’ve got to kiss the girl
Why don’t you kiss the girl
You gotta kiss the girl
Go on and kiss the girl

Kiss the Girl Songwriters: Alan Menken‎, ‎Howard Ashman

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If that wasn’t communicating, I don’t know what is. Way to go Jacob!

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 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.

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!

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.