Jacob 1 Mom 0

Dr. Seuss said it and now it’s my turn to repeat:

The sun did not shine. It was too wet to play. So we sat in the house. All that cold, cold, wet day.

We were in the middle of a chilly week here in the south. Cold weather adds a hindrance layer for us with Jacob. He won’t wear a hat or gloves. He is particular about which jacket suits him. I cringe when I see his bare feet on the cold ceramic tile floor but if he keeps taking socks off ….

This particular day was just as Dr. Seuss described it. But, I had not planned for us to sit in the house all day. Even though I am a home-body through and through, sometimes there are errands to run, work to be done, appointments to make, and places to go. So, I woke Jacob up and broke the news to him, “yes, you are going to SV today.”

And then continued on with our regular routine of getting him dressed and ready, with his stubbornness slowing me down. He did choose his royal blue shoes which I thought was a fun choice on a drab day. Only thing we lacked was getting a jacket on. Simple enough.

The jacket was in a basket in our bedroom where clean laundry was ready to be put away. When I picked up the jacket, he snatched it and threw it across the room. I was unfazed. He became obsessively interested in what was in his dad’s basket of clean clothes. One by one he picked up an article of clothing (which automatically unfolded it), examined it closely as if he’d never seen anything so amazing and then tossed it aside. Trying to be patient, but not wanting to refold laundry, I started insisting we get the jacket on and head out the door.

And, he started insisting we not! I’d get one arm in, with him spinning in circles, for him to jerk it out. We danced around with me determined he was wearing that jacket rather than be out in the cold and rain. Short story is, finally the jacket was on and zipped.

Once in the garage he wouldn’t get in the van. Often when that’s the case, I’ll sit in the driver’s seat until he decides he has stalled enough. I had to lock my door because his mission was to annoy me every way possible. Finally, after much crazy stuff in between, he climbed in the back as if to say, ‘alright, I’m ready to go.’

It was a ploy! That’s exactly what it was! I’m telling you my son cooked up a ploy. He would not let me fasten his safety belt, so I stepped out thinking I’d go back to my seat until he calmed down. He agreed that I’d had a grand idea and quickly climbed out as well. And as I made my way around the van, he quickly got into the front passenger seat.

The morning was not going so well. We are now 20 minutes into our garage stand-off. The front seat is never a good idea for him but I’d be insane to go anywhere with him riding shot-gun, particularly on a day like that!

I got out and told him to do the same. He wouldn’t. I knew there was little he could ‘bother’ where he was, plus he was safely in a closed garage (with his jacket on—for what’s it worth). I went in the house and texted his dad. “I didn’t take Jacob. He is currently sitting in the front seat of the van and I’m inside. He was awful for a solid 20 minutes and he finally got the best of me.”

I sat there stewing and 10 minutes later went back and told him to get out and come inside. “We are staying home today.” He complied. No surprise there. I basically warned him that I was in a bad mood, because of his actions, and he best make the most of getting to ‘sit in the house on the cold, cold, wet day’. Which was easy because it’s what we all want when there is such dreariness out the window.

I was mainly upset because he used negative behavior to get what he wanted and he won. I’m a sore loser.

I made a cup of hot chocolate with whipped topping needing a hug in a mug. You know what he did next? While sitting at my desk, enjoying my treat and getting some work done, he came over, leaned in and kissed me. Little rascal! How am I supposed to stay mad now?!?!


Death Grip

At bedtime, we ‘deactivate’ Jacob’s room. Turn his television off at a power strip. Put his MP3 player in his closet. Roll his keyboard out into the hallway. Check under the bed for miscellaneous toys and video tapes. Turn his overhead light off at the fixture. Lock his closet door. All of this is because we learned a long time ago that he might very well play all night if he had something to entertain him.

One night recently, after Jacob had gone to bed, I heard him playing with a toy. This particular night, we both had failed to check under the bed. As lights went out and we said, ‘good-night’, I imagine he probably waited until he thought we couldn’t hear and then happily pulled two toys out from under the bed. Both made by Leap Frog, a tree house with various singing creatures and a musical spinning ball.

Hearing a song, ‘Hey, I’m Lily, let’s sing!’, I eased his door open and there he was, sitting on the bed having a great time with a favorite toy. The tree house.

The ball was laying at the foot of the bed away from Jacob. I grabbed it and put it in the closet. One down, one to go. I reached for the tree house toy. It has a handle making it perfect to grasp tightly and hold on. Which he did with deceiving strength. For too long, I would reach for it and he’d quickly move it away from me. This went on for a few minutes. I was amused at how determined he was for me NOT to take it away from him. I was tempted to let him keep it but knew if I did, we would both pay for that mistake come morning.

Finally I got a good hold on it and was able to loosen his grip. While I moved toward the closet, he jumped off the bed and put both arms around me trying to keep me from opening the closet door. He had a bear hug squeeze on me for sure. I got to the closet, opened the door, dropped the toy in and locked the door.

All this time, Jacob has a death grip on me. Both of his arms around me squeezing with all his might. I was telling Jacob he needed to go to bed. And, trying to move toward his bedroom door. He continued to hold me with everything he had. I wasn’t sure if he didn’t want me to leave the room or he was hoping I’d give in and let him have the toy back.

Jacob isn’t a big fella but he is a strong one!! I felt like he was never, ever going to let me go. While I was wondering how long he’d hold me hostage, it was one of the best hugs I’ve ever gotten from him. Even if it felt like ’til death grip do us part.

Security Manager

One of the things about our home that is probably different from most of our friends, is that we often have interior doors locked. If a room is off-limits to Jacob, it is kept locked. That is basically all bedrooms except his own room.

Pictured below is why, my sewing/craft room should be locked! This particular day I discovered him sitting on the bed here, enjoying looking at a book. But, these forms of entertainment are only fun for so long!

Or it could be something that is harmless and he enjoys, such as pulling out every photo album in the house. It’s a shame that he can’t have access to those as he loves looking through pictures. He destroys the photo albums and it’s up to us to put it back together. Digital photo frames have been a great answer to allowing him to still enjoy photos without creating such a mess.

Watching for the next image.

Sometimes it’d be nice if we could lock our kitchen . You know those alarms on refrigerators when the door is left open? Seems they aren’t actually loud enough to alert us. We have rigged up refrigerator and pantry door locks from time to time. You just don’t think about what damage can be done when he has access to those.

Once we were outside and came in to the refrigerator door being wide open and our young golden retriever, Gracie, helping herself to a bag of grapes YES—I am FULLY aware of how dangerous that can be. And YES, we had to induce vomiting. Times like those make you understand the importance of either locking or don’t leave him unattended.

And then all the exterior doors are kept dead bolted as well. Out of habit we are constantly turning that deadbolt key. LINK: https://problemfreephilosophy.blog/2019/01/17/run-away-pain/

He has started a new thing lately. As he walks through the living area, he checks the front door to be sure it is locked. Not only do we have the fear of him leaving the house unattended, but of him opening a door and one or both of our dogs heading to the street with him. I have no idea what prompted this security check but he is on it.

I like to think he has given himself to job of home security manager. He is constantly checking lights to be sure they are working and doors to be sure they are secure.

And if they aren’t, we’ll be notified either by him or the after effects of his checking! Anyone hiring?

Picked by God

December 2003

Jacob’s Mamaw celebrated her 92nd birthday this week. She has been a widow for 27 years. The last several months have been extremely hard on her. She has a sitter for 30-40 hours a week to keep her company and help meet her needs. In the past, when we’ve suggested a sitter, she would always balk and say she didn’t want or need anyone staring at her all day!

Here’s where Jacob comes in as her companion sitter also stays with him one day a week. He is their common bond. Jacob is the key to her heart and the ticket to the sitter being accepted. Which means the sitter staring at her all day became a moot point.

July 1983

Often their daily talks revolve around Jacob. While dementia has set in and Mamaw lives in the past more than the present, her heart clearly remembers Jacob. Usually the sitter has a current photo of Jacob on her phone and that will spark conversation. Recently, it was recorded and this is how it went (sitter’s comments in parenthesis):

Mike and Terri take up a lot of time with Jacob. (Yes, they do.) And, that’s why God gives special kids to special people (mmmm hmmmm). And, He chose them when he got ready to send Jacob out, for them to get him because they would take care of him. (Yes ma’am, they take good care of him.) Anybody else would have put him in a home and left him there. (No, Jacob is WELL taken care of.) I know. (Yes, ma’am.) Growing up, they went through everything trying to care for him. A lot of people would have stuck him in a home and forgotten about him but they didn’t. (No, they didn’t.) So, God picks His special people.

Note: Mamaw was a young adult in the 50s when it wasn’t unusual for children with disabilities to be institutionalized. I cannot imagine and thankfully it wasn’t common practice by the 70s, but explains her thinking.

It’s probably no surprise, the onset of tears that followed when I received this recording. Mamaw has had tough, tough days and we’ve heard her say things that we know aren’t really ‘her’ talking. But, without a doubt, this was her speaking from deep in her heart. If you could have heard it, you’d have heard conviction in her voice. She spoke with strength and without hesitation. It reminded me of the grief our parents felt when they heard words like mental retardation and autism describe Jacob. And how, as a parent, you’d do whatever you could to keep your child from experiencing pain and heartache.

And another day, Mamaw talking about Jacob:

I hate it so bad. He’s really a sweet, lovable boy. He’s just all messed up but you know, that’s God’s will. God knows he’s like that and He is taking care of him. We have to respect that. Mike and Terri were two people that were chosen to give him to because they could do what was right.

She has suffered a lot and we would give anything to make her days better. Yet, without knowing, she made my day 100% better. Her confidence in God’s perfect plan was an inspiration and precious reminder.

See, God gives special people to us in the shape of parents, grandparents, and great grandparents. And, children, siblings, aunts, uncles, and cousins. Family. In their own ways, they bless, support, and encourage us. Yes, our family tree was designed, picked, watered, and pruned by God. And it is perfect in all it’s beauty.

“The heart of a man plans his way, but the Lord establishes his steps.”

Proverbs 16:9

It’s a Fact

These are just some of the fun facts about my boy.

Number of words he has ever spoken, 0
Number of soft drinks he has ever had, 0
Number of seconds before Jacob will put his arm down your shirt, .5
Number of siblings, 1
Number of broken bones, 1
Number of 5Ks Jacob has ridden in jogging stroller, 2
Number of adults programs he has attended, 2 Number of trips to Disney World, 3
Number of nieces, 3
Number of houses Jacob has lived in, 3
Number of fast food burgers Jacob will eat in one sitting, 4
Number of schools he has attended, 4
Number of pieces of cheese toast for a meal, 6
Number of hours for Jacob to drink a half gallon of Chocolate Milk, 6
Number of scrambled eggs he eats in a meal, 6
Number of mini chocolate candy bars allowed in one day, 6
Number of Disney Tunes Kidsclips toys in his stash, 10
Number of 1st cousins, 13
Number of years with same sitter, 30
Number of VCR tapes, between 75 & 100!
Number of miles Jacob has ridden on longest day trip, ~1200 to Denver
Number of pajama bottoms he has destroyed with his fingers, lost count.
Number of times he has walked into a room naked, I’ve tried to forget!
Number of mini chocolate candy bars he wants, too many to count!
Number of times my heart has exploded when I see his eyes search for me, Infinity!

Number of hairs on his head, only God knows. And you can be sure HE does!

Isn’t it great how God made us all unique, one-of-a-kind? You are a special masterpiece made by God. It’s a fact!