Twelve Weeks!

Today marks twelve weeks since Jacob has been home. His day program didn’t close until nine weeks ago. But, I kept him home initially because he was struggling with the time change. And then just knowing he couldn’t abide by social distancing and washing his hands appropriately was reason enough to keep him in.

There’s a reason we don’t know the future. Agree? If someone had said, ‘listen, the state is about to shut down. Schools will close. There’ll be travel restrictions. No movie theaters, eating out, etc.’, would I have kept Jacob home starting the 5th of March? Probably. Though there has never been a time, before, when Jacob was basically home-bound for three months! And in the current situation, we are, for the most part, home-bound with him. There wasn’t really anywhere to go anyway so it worked out fine.

Here’s the deal though, Jacob has been a champion! In the first few weeks, sweet friends would reach out, “how are y’all managing? Is Jacob doing okay?” “I know this is hard, what can we do for y’all?” Jacob was made for this! In the April 9th blog post #stayhomeflattenthecurve, I mentioned how his anti-social temperament is working to his advantage right now. And what helps him, helps us.

What does he do all day everyday? If you’ve followed this blog long, you probably know the answer to that. Keyboard, MP3 player, musical toys, videos, television, snack, eat, and snack some more. Often, I’ll check him on the video monitor and he will be bouncing on his bed! He has been most content. When he is content, so are we.

There have been a few times when I definitely felt like he was tired of us. And, honestly I’ve been tired of him. But 99% of the time, we have gotten along great. In the first month, there was only togetherness. I got out of the house maybe 2 times for a short period of time. Next month a few more times. In these three months, he has seen a sitter twice, his grandparents from a distance, once; taken a neighborhood stroll, and various scenery from rides to get out of the house. No wonder he is tired of us!

Two weeks ago, I hit a wall. I was spent physically and mentally. It was maybe, maybe the third time in 12 weeks that I had the thought, “I’m not sure how much longer I can do this.” I’ve been doing ‘this’ for 4 decades but not under the current guidelines. I had to allow myself a break. Thankfully Mike has been working from home and we can tag team when needed. It feels odd to schedule a best time for me to run an errand so he can watch Jacob, but hey, at least errands are ‘okay’ at this point in the game.

We have so very much to be thankful for in this uncharted territory: 1) we are not alone. All of our family and friends are also learning a new normal. 2) we have everything we need with food to spare. Our jobs look different but we still have tasks to complete and people who rely on us. 3) technology has enabled good ways to connect that help combat feelings of isolation. I am making it a priority to Zoom with friends and FaceTime with family on a weekly basis. Social media has provided platforms for Bible Study, learning, and needed challenges to stretch and grow us. 4) the slower pace has afforded time to finish projects and learn new skills. I can’t rush Jacob no matter how hard I try and now I haven’t had to! 5) my dear fella has been exactly where he is most happy. His own little space surrounded by things that bring him joy and parents who are making the most of this season in our lives.

This week we went riding two days in a row to deliver some sweet treats to friends. Sometimes on these excursions, he is happy just looking out the windows. Sometimes, he requests a DVD to watch. The first day was literally 3 hours making 9 stops. He watched the DVD, SING, through twice even humming along during parts. It was a great outing that he enjoyed from beginning to end.

The second day we needed to finish what we started. I ask if he wanted to go for a ride and he jumped up and headed for the door. That day we had 4 stops to make. About half way through, I saw him do this:

Bless his heart, he was over going for a ride! We made a point the get him burgers and fries (making it a 5th stop) as he had been a really great sport.

All that to say, I might have freaked out if I had known we would be together for 12 weeks, at home, with little outside activity. I am surprised at how well we’ve managed! We’ve just gotten word that his day program is open and ready when we are. Again, not sure how that will work for Jacob, but I am up for whatever the next 12 weeks bring because that sweetheart son of mine has been better than okay.

Strong-Arm

strong-arm (strawng-ahrm)
Adjective
using, involving, or threatening the use of physical force or violence to gain an objective
Verb
to use violent methods upon, assault
to rob by force
to coerce by threats or intimidation, bully

dictionary.com

Once a friend asked if I was afraid Jacob was going to hurt me. A fair question. My answer, “I’m more afraid I’m going to hurt him.”

I clearly remember being in junior high school and not wanting to walk past the special education classroom. I imagine most of you, if you’re honest, would say you had similar feelings, too, at one time or another. They were different from me. I was way more nervous and afraid than I should have been. The not knowing and understanding created uncertainty. Not being around them created unmerited fear.

I KNOW Jacob. I know he isn’t going to rare back and hammer me with his fist. Or throw a chair at me. Yes, he has accidentally hurt me. Once we were practically wrestling trying to get him to stay in the bedroom and go to bed. In the darkness of his room, he reached for me as I was moving toward him and his finger found my eye! I’ll spare you the painful details and not share the creepy picture, but, it hurt like crazy and it looked even worse. Imagine me trying to convince the MEA physician that my adult son had poked me in the eye. And that it was strictly an accident!

I’ve mentioned before about guys and gals that attend his day program being afraid of Jacob. It stings but it is their reality and I definitely get it. He has scared them one too many times by grabbing at them. Not hitting or being aggressive. But it can feel like an attack from a bully and can definitely make anyone uncomfortable.

Jacob isn’t a big fellow. I am continually thankful to God that he isn’t over 6’ tall like his brother. We celebrated when his weight hit 110 pounds. But, no kidding, his strength is deceiving!! Just ask the kind dental staff when he goes for a check up twice a year!!

I have often used the term ‘strong-arming me’ when I’m describing Jacob. Whether it is getting him dressed, shaving his handsome face, brushing his teeth, you name it; he will grab my forearms and lock his and it is really difficult to do a thing! I have had bruises on my arms from the supernatural strength in his fingers. I know. I know. It can’t be that hard to break free. It is. It just is. Remember, I don’t want to turn ninja and hurt him!

One morning I was in his room and sure enough, strong-armed. The TV was on and I don’t know whether it was a news feature or a regular show but it was about a family who had several adopted children with severe physical disabilities. THREE of them had no arms. It was inspiring to see how they had overcome such tremendous hardships. I was convicted right then and there. To be thankful Jacob has arms he can use that serve him well. And that he is strong.

“I cried because I had no shoes until I met a man who had no feet” .

Helen Keller

Puts things into perspective when you stop and think, right?

I am not afraid of Jacob but am concerned that the reflex of my initial response could injure him. After all, no one wants to have a finger jabbed in their eye. I mainly want to just diffuse a situation to redirect him and make sure neither of us gets hurt.

strong-arm (strông′ärm′)
“Leave me alone.”
“Don’t straighten my shorts!”
“Stop that!”
I don’t want that for breakfast.”
“I’m not ready.”
“Don’t touch me.”

-Jacob Pigford

He uses what he has to communicate and strong-arming is a language we both understand.

Once There Was …

an MP3 player who was well loved and brought great pleasure to its owner. It was loved so constantly and so hard that it couldn’t help but show some wear and tear. And try as it might, it wasn’t strong enough to keep serving it’s master day in and day out.

Because it was this young master’s main source of entertainment, his parents were always on the lookout for the next one. Knowing the day would come when, tragically, the MP3 player would most certainly meet an untimely death.

It’s owner, Jacob, would become very attached and as other things through the years, would struggle a great deal with accepting a replacement. Sometimes even if it was an identical match.

From the moment a new one is placed in his hands, it no longer ‘looks’ new. It will have been taped trying to hold the cover in place. The adapter secured with tape. And, more tape to lock the SC card in it’s slot. Everything taped! And, that’s the first day before it is handed over to our boy.

Often, Jacob will remove a knob and then be extremely frustrated with us when said knob doesn’t perform as before. Or snap the cover off, only to be bewildered when it won’t make music. Even though there is no CD in use, the player will not operate without a cover.

Once a text was received, with this picture, from his sitter:

Yes, it literally looks like the player exploded. Never fear—there was no heat or sparks associated with the damage. It was dropped one too many times and well, you can see the result. The industrious sitter did his best to perform surgery on the player but it was never the same.

I’ve lost count of how many players have been purchased through the years. Whether at a box store, direct website, Ebay, or other online source. Of course, the style he uses, the features that work well for him, are not always easy to find. Like other attachments he’s had that eventually need to be replaced, it gets harder and harder to find what we are looking for. And, like other things, I have a feeling that one day, his focus will shift to a new form of entertainment.

We keep a stash of ‘expired’ MP3 players knowing a spare knob might be needed, or a cover replaced, or perhaps a new handle snapped in until a new one is delivered.

But in the meantime, we will try our best to continue providing the service he expects from Mom and Dad. Time to pull out the next one, tape it up for battle, and go through the adjustment. Even though the player can’t possibly live Happily Ever After, our aim is just that for its master.

Greeting Card Granny

Jacob does love him a greeting card. He likes other mail, too, like flyers and catalogs. Anything colorful and bonus points for a slick finish!

His Granny is his #1 provider of mail. She sends him cards a lot!

It’s funny because he isn’t always ready to open it when I show it to him. He enjoys studying the envelope (ignore my feeble attempt to blur info), her writing, their return address, the color, the stamp. He’ll rotate it to different positions to see what everything looks like upside down. (I suppose that is what he is doing. I really don’t know!)

And then, I’ll find cards in random places around the house. He used this one in re-decorating for Easter. Doesn’t every bunny need a card balanced on it’s head?

Under his bed is a favorite place to ‘keep’ cards handy just in case he wants to read one.

It isn’t unusual to have several on a kitchen counter. And, almost always one or more nearby during a meal. Sometimes, he has to hold one while he is eating. Unfortunately, there was a really cute spring card he received from them a couple of weeks ago that he HAD to have in hand while he ate lasagna. Only problem was with each bite, lasagna got on the card. It was such a mess, I had to toss it. (Sorry Granny!)

With Mother’s Day in a few days, I wanted to focus on one way my Mom has loved Jacob so very well.

Jacob does not seem to keep tabs on where all his cards are at all times. I think he just knows another one is coming!

Cards can share so many sentiments. I don’t know if Jacob is all that interested in the words printed from the manufacturer.

I do know it makes him happy to have a card signed,