I’ve written this post for Jacob. It’s really not right for me to assume what he’d want to communicate. Who am I to know what he’d ‘say’? However, after all these years, I have an idea. I think a pretty accurate one and believe it would go something like this:
Today is my dad’s birthday. I want everyone to know he is the best dad ever. I am one lucky dude for sure.
Before I was born, my dad already had my name picked out. If he had a son, he wanted to name him Jacob. So when the doctor said “it’s a boy”, my dad was super excited! His firstborn, called Jacob.
We would have so much fun. Camp in the backyard with flashlights. Teach me to ride a bike. He imagined we’d go to ball games to cheer on our favorite team and ride motorcycles one day. Maybe we would learn and play golf together. And I might graduate from the same college and become an engineer like him. Parents dream big dreams for their children and he probably did for me.
Instead, a neurologist told him I wouldn’t grow and learn like most children. It was a sad day and I watched tears roll down his face. But you know what? My dad has never acted disappointed in what I can’t do. It seems his mission in life is to help me do my best. He tries to set me up for success. I know he wants happiness for me most.
The involved dads help out with their young children. They may feed, give baths, and brush teeth. Read a book before putting them to bed and say night-time prayers. What they don’t do, is consider they may be doing those things for the rest of their life. But my dad has continued to do those things and even more to meet my needs for 40 plus years now. Over and over again. Including praying with and for me every single night.
Dad, today on your birthday, I want to say thanks for always being there for me. Today I want happiness for you the most.
May you have all the chocolate you can eat. Enough for you and enough for me (because you always share).
As you are out on the golf course today, I hope you have a really Happy Happy Birthday Dad!
Fairly often when I drop Jacob off in the mornings, the entrance to his building may be blocked or crowded. Not that he can’t enter. But there may be 2, 3, 4, 6 people either in the doorway, at the check-in desk, or in the only available hallway.
It may be staff congregating, parents, or clients arriving. Herein lies a problem. Jacob has an aversion to walking between people. Or, sometimes even walking past a person who may have their back to him and not causing any interference whatsoever. I’d chalk it up as social anxiety. Perhaps. Why is that? Your answer is as good as mine. I don’t know for sure but I do wish it wasn’t an issue for him. It is hard to avoid in so many situations. But, I can tell you this—it helps to clear a path for Mr. Pigford.
By observation, you can determine which people ‘know’ Jacob. They may have experienced his wrath. They move out of his way. It’s sad for me when I see peers scurry away. “Here comes Jacob.” But the truth is, he has gotten his point across to them and they’ve learned to respect his space.
We are taught to use good manners. Hold a door open for someone approaching. Unfortunately, that is not the thing to do when Jacob is headed for the door. Over and over again, I have witnessed a nice mannerly person open the door for him only to receive a very unfriendly ‘thank you’. YIKES!
I feel like I am always apologizing for his behavior. Coffee in your hand? Hold on tight, there’s about to be a spill. “I’m sorry.” Purse on your arm? Not for long as he may grab it and toss into the bushes. “I’m sorry!” Arm full of papers? Watch out, they may go flying. “I’m so sorry!” Nothing between you and him? He’s probably going to pull on your clothing. “I’m sorry!” “He popped buttons off your shirt?” “I am so sorry, bring it back and I’ll sew those on for you!”
Very often I have a feeling of déjà vu as I watch Jacob when people are nearby. Sometimes I’m almost holding my breath. Sometimes praying. It’s like a movie I’ve seen before. I know how it is going to play out. And it’s probably not going to be a happy ending. I can’t decide whether to intervene and warn his intended victim or see if perhaps it doesn’t play out like it has other times.
The good thing about stepping aside and letting Jacob open a door for himself is his focus shifts to the job at hand rather than the person. (Not that he can’t multi-task but your odds are better if he has one hand on the door.)
Doorways are not the only time he may act out. A crowded hallway can feel as threatening to him. You know how dignitaries have security that practically circles them making sure the ’common’ folk don’t get too close to touch? Jacob needs his own shield or security detail to keep everyone at a safe distance. Or maybe porcupine quills …
When Jacob was little I made him a small book out of fabric. It was before everything kids owned had a monogram or applique. He loved that book. That was close to 40 years ago and would you believe we still have it? Check it out. More like a rag now as it was washed so many times. He hasn’t cared a thing about it in decades but I can’t bring myself to throw it away.
Often children attach to something that becomes their security blanket. Their emotional support. My sister’s silky nightgown became her daughter’s must-have blanket. My granddaughter had a small ‘lovey’ that was her comfort at bedtime. I can’t say Jacob HAD to have the book to go to bed at night, but it was something he held tightly and seemed to know where it was at all times.
There is another thing that he did get attached to many years ago. A toy called Disney Tunes KidClips. Each came with various clips, one song a piece. All were Disney related. The name of this blog is because of his attachment to the Hakuna Matata clip from the movie, Lion King. No matter how many different clips we tried, he always went back to Hakuna Matata.
For more years than I can remember, that toy went with him when he left home. In the car, to his day program, to church, etc. It definitely served the purpose of a security blanket of sorts. Thankfully, it had no volume controls so the sound level wasn’t too bad, or so loud to totally annoy those around him.
Although, in his Sunday School class, it was frustrating for his classmates to voice prayers. “Lord, help my sick”Hakuna Matata, what a wonderful phrase, “brother to get well soon.”“I pray for my grandma”Hakuna Matata ain’t no passing craze. “who has to move.”It means no worries“My dog”for the rest“ran away.”of your days. It’s our problem-free philosophy. “In Jesusname,”Hakuna Matata! “Amen” His whole class was great about having the lesson and prayer time with Jacob playing Hakuna Matata as the background music.
And while it was a sturdy toy and a battery would last a LONG time, they did eventually break or wear out. Or, he’d lose one. Or hide one. And yet, he HAD to have it to carry when he went somewhere. We needed to make sure to have a back-up or four or ten. At some point, they were no longer manufactured and became harder and harder to find. We would scour Ebay to be sure we always had a decent stash. Even then, sometimes there would be mild panic when we couldn’t find one. If we didn’t have a back up we were in trouble. Have you ever experienced a ‘security blanket’ missing moment with your child? Yes, like that with Jacob. Not pretty.
We are nothing if not prepared!! But, perhaps our stash has gotten out of hand.
We kept a tracker fob on the current one he was using because it wasn’t unusual for him to hide it while at his day program. Maybe stick it on a book shelf. A desk and cover it up. Under the couch (a favorite). Then when it was time to leave, multiple staff members would look everywhere with no success. BUT, I knew better than to drive away without it because the next morning, he’d conduct a frantic search for it in the van before leaving home. The tracker with app came in handy more times than I can count.
Then something changed. I’d go to pick him up and one of his teachers would say, “Jacob hasn’t played with his Hakuna Matata all day.” Often it was exactly where he set it down when he entered the building. They were realizing that he may have lost interest in it. At home, he has so many toys and things to keep him entertained that he rarely played with it there. But away from home, it was the one thing he wanted nearby. We decided to do a two week test. Send it with him and note whether or not he looked for it, picked it up, carried it around playing his favorite song.
After the testing period, his teacher said, “you know how kids outgrow their security blanket at some point?” “I think Jacob has outgrown Hakuna Matata.” “He doesn’t need it here anymore.” WOW! Just like that! It was hard to believe he really didn’t ‘need’ it. We decided then to quit sending it. And you know what? My boy has grown up and will go days without it.
I have no idea if he will find a new ‘security blanket’ and if so, what it might be. But for the time being, he’s sure of himself and manages fine without one. Good for you Jacob!!
Families with special needs have to complete a ridiculous amount of paperwork. We go through yearly evaluations that seem totally unnecessary. Often answering the same questions over and over again. No, he still can’t do this, this, or that. He hasn’t been hospitalized. Yes, he still needs help doing this, this, and that. I get it. Sorta. I understand there is a small chance that a new insight, a developed skill, a different answer might influence a person’s eligibility in a program. But, come on, I want to say, ‘nothing has changed—make a copy from last year and I’ll sign it.’ But the question that has brought me to tears, the one hard, dreaded question that gets me every time is, “does Jacob have friends?”
I remember when Mike and I first got on Facebook, we were literally comparing and competing with each other to see who could get the most friends. All in good fun, right? And honestly, we all have some FB ‘friends’ that don’t even really know us. They may know our mom or dad or dog. But 808 real friends? Hardly.
“If you have two friends in your lifetime, you’re lucky. If you have one good friend, you’re more than lucky.” ― S.E. Hinton
I watch guys that attend the same day program as Jacob and there is a camaraderie among them. Obviously friends. And then when I’m asked the hard question, it seems Jacob doesn’t have those relationships. It would stump me. It would make my eyes water. It would frustrate me. I’d think ‘No, and quit asking me that same question.’ The truth is, he can make it hard to be his friend. He doesn’t want people around him. Most are afraid of him. Friendship requires similar likes and dislikes. Something in common. Communication. Trust.
See, I had a certain view, my own definition of what it means to be a friend. Neighborhood pals. Someone from school to play soccer with on the playground. A person you’d go home with after church and spend the afternoon building forts. Someone who would invite you to their birthday party. I’d picture Jacob’s brother with his gang of friends hanging out together every chance they got. Before and after they could drive, seems they spent every waking minute possible together.
I’d think back to friendships I’ve had that have stood the test of time. And how I aim to be intentional to be a good friend, to make new friends, and develop genuine relationships. Friends are so important. Friends are supportive. Friends know us and love us anyway. A life without friends seems dreary indeed.
Then. Then it dawned on me. Jacob doesn’t have friends in the typical sense but he certainly has friends. I’m sure he considers our family members, friends. His sitters are people I believe he counts as friends. Teachers through the years are definitely friends! We’ve had neighbors who have wholeheartedly ‘friended’ him. I became keenly aware of how blessed he’s been to have long time friends in his life and they are all family, sitters, neighbors, and teachers. I think if Jacob could talk, they are the people in his life he’d name as friends. Those are all people that he looks forward to seeing. I’m sure his heart his smiling when they are around.
When I think about what being Jacob’s friend means, in many ways, it is a one-sided, out-of-balance relationship. There is no confiding with the other of secrets or fears. No going on adventures. No sharing dreams. But there is understanding. There is trust. There is a pure heart with no agenda. And I am reminded that friendship means loving another person at all times.
4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres. 8 Love never fails –
1 Corinthians 13:4-8a
I realized Jacob has the best sort of friends. They are there for him whether he can be there for them or not.
We are blessed beyond measure by our friends and those that are Jacob’s friends. I’d call them angels on earth.
I was in the parking lot at the front door of Jacob’s day program building. Staff saw me pull in and called for my fella, “Jacob, report to the front. Jacob, your mom is here. Report to the front.” While waiting, I watched a lady and her son arrive minutes after I did. They had come to tour the facility. I suppose looking for a good fit.
As Jacob came to the double glass doors to exit, they were approaching from the outside to enter. All of a sudden, Jacob turned around, pulled his pants down and MOONED them. Yes. He. Did. I was horrified. What kind of greeting was that??? ‘WELCOME! You’re going to love it here!’ I couldn’t see the look on their faces but my vivid imagination pictured a lady that was probably shocked and her son that was probably laughing.
I could not get out of my vehicle and to the doors fast enough. At the same time, three staff members were scrambling to get to Jacob. Had it been anyone but my boy, I might have thought it was funny.
In his defense, it wasn’t like he had the thought – ‘I’ll turn around and pull my pants down and show my skinny behind.’ No doubt his thought was, ‘I need to go to the bathroom before I leave this building.’ When ya gotta go, ya gotta go!
I was apologizing and trying to get Jacob’s pants up at the same time. It all happened super fast as we successfully hurried Jacob to the restroom. The lady was understanding and well, the young man was humored. What guy doesn’t find mooning hilarious?
It was a Wednesday in June When I saw my son moon. I wouldn’t have looked to see, But he belonged to me! He had to go, and couldn’t wait, All we could do was cooperate. It could be called Indecent Exposure. But some had trouble keeping their composure.
In the frenzy, I barely looked at them or made eye contact. Afterwards, I couldn’t even remember what they looked like. So, I have no idea if they enrolled in the program. I was almost afraid to ask. Crossing my fingers that they weren’t offended. Maybe Jacob even made that young man’s day. At least I hope so.
When Jacob was little, the television show, Captain Kangaroo was popular. I looked back to check the air dates. It was the longest running children’s show in its day from 1955 until 1984. Funny that it was on the air from before I was a tiny tot to the time I had toddlers of my own.
The show started with the Good Morning Song. It was a fun song with a catchy tune and quickly I ventured off the original lyrics and made up my own version. Every now and then the song comes to mind and I’ll sing it to Jacob. Doesn’t matter to him that I can’t sing. He’ll want to hear it several times until he tires of my rendition.
Hey, good morning, Hello how do you do? Wake up the sunshine, I want to share this day with you.
I started blogging to share stories about Jacob. I want the universe to know he is a really awesome guy. That is still my purpose. And, because autism is on the rise, I believe there is an audience that could be helped in knowing they are not alone. The spectrum of autism is as varied as the people with the diagnosis. But we all, as family and friends, want so desperately to make life better for those affected.
I follow various bloggers for different reasons. I love DIY, cooking, and art, to name a few. You have probably been overwhelmed at some point by the number of emails in your inbox when you follow a blog. So, I want my blog to be unique. And it is because it is our story. No one else has lived it. Your story may be similar for sure. But there is only one autism story for me to tell. Ours. What am I getting at? Here goes…
It still sounds odd for me to say, “I am a blogger.” It’s a pretty popular thing to do these days, but is altogether new to me. When you set out to blog, the format offers some interesting tools. Tools that I suppose can be useful in growing your audience. If you understand their purpose and how to implement. Those seasoned bloggers already know this but if you are ‘green’ like me, you might not realize there are various stats available to you as an administrator. Things like traffic to your site, number of views or clicks, most popular day, number of words per article, etc. One of the most enjoyable statistics for me, is the Countries information. It shows how many views per country on any given day.
Like it or not, my world is quite small. I truly forget about what is happening on the other side of the planet from us. Recently I was surprised by the number of views Problem-Free Philosophy received around Jacob’s birthday. I realize some of those could be hits that would be considered spam. But overall, when people from countries around the world read my story about my boy, I am blown away.
I want to say welcome aboard with all the southern hospitality you can imagine! Thank you for taking time out of your day to peek into our world. For allowing me to share a few minutes of my thoughts, from my heart, each week. My aim is for my words to give you encouragement and hope. Maybe some amusement and laughs. Perhaps you’ll have some questions answered or a post may raise questions. Or think about someone you know who might like to follow along. Yes, I am writing for my son but for the sons and daughters of others families as well. When I think about the last 40 years, I realize how blessed I am that Jacob is mine. I am determined to make each day of his to be the best it can be. Your presence through cyberspace, has helped me see things differently and smile on the inside!
So here’s a BIG shout out to you all. The United States and United Kingdom view this blog the most. It was truly exciting for me to know that on the day we celebrated Jacob’s birthday this year, that people in these 42 countries knew it was a special day, too.
In order of views on one day.
And, maybe even silently wished him a Happy Birthday.
Thank you for stopping by. Had I known you were coming, I would have greeted you with a song:
Hey Good Morning, hello how do you do? Wake up the sunshine, I want to share this day with you!!
It was a regular day, about 15 years ago, and I was taking Jacob to his Day Hab program. I don’t recall why he wasn’t picked up that day as 95% of the time they provided transportation to and from our home. Either way, I had just turned out of our neighborhood and probably wasn’t going 20 MPH when things turned dangerous. Jacob reached for me. And, it wasn’t in an endearing way.
Note: When he is agitated he often takes it out on us. That usually means pulling on us in some fashion. Grabbing and pulling our arms or hands is usually his first M.O. If that doesn’t get our attention he will reach for the neck of whatever clothing we are wearing and proceed to pull using every muscle. Or better yet, put his hand/arm all the way down wearer’s shirt. Yes, he does. Could be the front or back but it’s a maddening act that he knows gets attention. It is simply impossible to ignore him when his arm is down your shirt. More than once, he has reached for the neck of a shirt I had on and in the process either broke my necklace or gotten his fingers caught in one of my earrings. Frustrating doesn’t begin to describe it! And you can imagine if you are driving when this occurs it could be bad news!
Back to my story. As he reached for me that morning, instead of pulling on my arm, he grabbed the steering wheel and in the process knocked the gear shift out of drive! MY STARS! It scared me to death. Well. Almost. We didn’t wreck but we could have. As it was, I only ‘appeared’ to be under the influence!
There wasn’t another car in the oncoming traffic or in my lane. I am positive angels were watching over us and had an imaginary road block set up. I quickly pulled over into the gravel parking lot of a horse stable and just sat there shaken and shaking. We were in Mike’s small truck and there wasn’t a full back seat option that would work. I turned around and we went home. I knew in my heart that was the last time Jacob could be a front seat passenger.
Fast forward to present day. One afternoon recently, I was at Jacob’s Day Services program to pick him one. As I was waiting on him, I stood in the parking lot talking to another parent. Jacob came out and circled the van. He often takes his time like he is playing a game about which side to enter. He opened the driver’s door and closed it. He opened the front seat passenger door. Hmmmmm … Sometimes he does so looking for a certain DVD to hand me. Not this time. He climbed in! UH OH!
He proceeded to throw out a couple of store flyers that were in his way. I talked a bit longer and then asked him to get out and climb into the back to his regular seat. NOT having it. He dug his feet into the floorboard and stiffened his legs. He was determined to ride shotgun! I couldn’t physically pull him out. I considered getting one of the male staff members to help me. How were we going to get home if he didn’t behave?
I decided to get in the van and see what he would do. Wait him out. Thinking he’d realize he never rides up front and would make things ‘right’ and move to HIS third row. “You’re not going to be able to watch a DVD from the front seat Jacob.” My reverse psychology had no affect. He wasn’t moving. I buckled him up and warned him, “if you touch me I am pulling over.” He reached toward me as if to see if I meant business. But quickly went for the dashboard controls instead. I turned on some music and that made him happy.
Slowly, I pulled out of the parking lot. Praying. Lots of praying – #JesusTaketheWheel. Literally. We had 1.5 miles to get home. We would pass the city police station. Maybe I should pull over there and ask for help. How odd would that be? Walk into the lobby and hit the microphone to connect with someone on the other side of the locked doors, “excuse me, my grown son won’t get out of the front seat. Could you send an officer out here to assist me?” I decided against involving the law. There was one busy intersection to cross. I drove super slow inching along and gripping the steering wheel ’til my knuckles turned white.
Thankfully we made it home without incident. (Again, angels watching over us!) Jacob never reached for me or the steering wheel. He did adjust the music volume and each time I reminded him to put his hands back in his lap. He was actually perfect. I’m quite certain that I held my breath the five minutes it took to get home. I’m not kidding. I was terrified that he would cause an accident. When I told Mike what happened, his eyes got big and he said, “that’s not good.”
Oh how I wish we could go back to the days of him riding up front and controlling the music. However, Jacob’s behavior is unpredictable and can be off the charts. The good thing is, these days he can watch a DVD for entertainment and that seems to be better anyway. Since that incident a few weeks ago, he has not attempted to ride in the front seat again, yet. And to stay a step ahead of him, I try to be sure that door is locked just in case.
Arriving home, I breathed a sigh of relief. And whispered a prayer of praise for our protection. Once again, I wasn’t pulled over for driving under the influence. Jacob’s influence.
This is Jacob. I cannot talk or put my thoughts down on paper. But, my mom knows me better than anyone so she decided to tell this story from my perspective. I approve of this post.
When I turned 21 I was no longer able to attend public school. (I got to stay longer than most.) I didn’t love school but in high school I had a friend, Mr. F. He was retired military who was on mission to help kids like me. He was the very best thing about those years.
A state Support Coordinator was assigned to me when I aged out of public school. They were the liaison who helped make sure my needs were being met. After high school, my parents enrolled me in a state run program referred to as Day Hab. There were some nice staff members there and I was content attending for many years. At some point my Support Coordinator suggested we visit another program. If I understand it right, they are required to let you know your options, or I think that is what Mom said. We weren’t unhappy where I was but my parents thought it’d be a good idea to at least explore what else was available.
We went to a Christmas Open House to look around. It was a non-profit that had added a day program that fall. As soon as we walked in, a man said, “Hey Jacob!! Glad to see you buddy!” It was a guy that had previously worked at the Day Hab center so it made me feel good that somebody knew my name. Plus another fella, about like me, walked up and took my hand. They both made me feel accepted. It was a pleasant atmosphere with music playing, which I really liked. And a large building with lots of rooms to explore, including a kitchen. My parents made the decision to move me to the new program, Day Services. I’m pretty sure they were way more nervous than me about how I’d transition.
My new adventure started in February 2013, which is where the title of this blog post comes into play. The program had adult clients of all ages and abilities. They offered various activities and some community vocational training for those capable. Early on, the Day Services manager commented to my mom that I wasn’t interested in participating in some of the in-house work opportunities that others were enjoying. They did things like shredding documents, sorting, stuffing envelopes, etc. It was nice that many of my peers were good at those things but it didn’t interest me. I’ve heard of work ethic but don’t think I have (or even want) one.
However, the manager of the program had a really cool office with a COUCH!!! It had other stuff, too, like a desk, chairs, work table, and equipment. My very favorite thing to do each day was hang out with the manager. I liked him but I liked his couch better! It was nice and comfy and fairly quiet in the office. It was then that my parents realized I aspired to be in administration. (Does an administrator need a work ethic?) I made a point to remain in that office as much as possible. Unfortunately for me, it was just that, an office. Therefore, used for things other than me chilling out. Imagine that! They had staff meetings in there. And meetings with prospective families. SO, when a meeting was scheduled, they would have to convince me to hang out somewhere else in the building. They had a lot of great rooms, just not another one like my favorite spot.
After asking me to vacate the couch fairly often for meetings, they realized that perhaps I needed my own space. My own office space, if you will. Thankfully they realized being surrounded by people all day was not my choice way to spend my time! Actually it was draining for an introvert like me. So, they made use of a small room, that wasn’t much bigger than a closet, for me to call my own!! Whoooo HOOOOOO!! From that moment, everyone knew that I (that’s Mr. Pigford to you) had my own office. I was on my way up.
Within my first year in the ‘new’ program, they expanded into a building next door. I was sorta bummed out about the change. I had just gotten used to one building and now I was being moved. What about my own office??? I like to visit other staff members but they have jobs to do so I really needed a room to call my own. And, what do you know? YES THEY DID! Once again, I had my own office and it was bigger and better than before. It had a couch and my music. Two necessities if you ask me. Later, colorful canvas pictures and string lights were added. Pretty sweet set-up for sure!
I hate to be stingy but I really don’t like for other people to hang out in my office. (Of course, when I’m away, they can pretend it is theirs.) When I am there, it’s okay for visitors to come in for a few minutes and then I have to gently escort them out. I need a sign: One is enough. Two’s a crowd. I try to be nice about it. Good thing is, it’s in a great location because I can hear and see what is going on around me and join in when I am feeling brave.
I’ve recently come up with a new idea. Hear me out. I like to go in the manager’s office. She (different person in charge now) is teaching me patience by requiring me to wait if she is on the phone or in the middle of an email. I’m trying really hard to show I am learning but some days waiting is too much. I am welcome there and feel it’s okay to just make myself at home. I’ll let you in on a secret. Shhhhhhhhhhhhhhh. They have a special snack closet and they stock it with my favorite snacks. Good stuff!! BUT, it is kept locked because I can’t be trusted not to help myself! However, I just happen to know the key to the closet is in the manager’s desk drawer! Don’t tell but that is why I like to visit her office on a daily basis.
I really like her office so this is the idea that I’ve been thinking about – ready? I wonder if she’d want to trade. After all, my office has a couch but her office hides the key to my heart, I mean snacks! This is why I need to be in administration so I could approve of these changes! Maybe one day …
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.
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!!
