The Dreaded Question

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.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.
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.

A June Moon

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.

Hello, How Do You Do?

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!!

Driving Under the Influence

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.

Step Into My Office(s)

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 …

As thought by Jacob Pigford.