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:

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!

Bright Lights

A few days ago when I went to pick up Jacob, he was slow to get in the van. Kept circling it, tried to open the doors of the car parked next to me, just generally taking his sweet time. At one point, I said, “come on Jacob, get in, we’re going to go see Christmas lights tonight.” That was simple. He hopped right in. A staff member who witnessed this, even commented about I had said the magic words. (Too bad that won’t be an option again until next December.)

As promised, we took Jacob riding to look at lights. Leaving home, he wanted the DVD playing to watch a movie but was a good sport when reminded the purpose of the trip.

None of my pictures are like seeing the displays with your own eyes, but I’m only sharing to show a little of what brings my boy joy. These are within a few miles of our home.

He smiled and sang and twisted around to look again. It was about a two hour car ride that gave him many more minutes of memories to dream about.

Frankly, we have very few lights in and outside our home at Christmas. Jacob does have some lights in his room year ’round but it seems like the ones designated to Christmas decor never work like they are supposed to. In turn, we get terribly frustrated at what is supposed to be fun.

I’ve said the devil is in those strands of Christmas lights because they give us fits and bring out the worst in us! (It’s no wonder when you think about it though, devil and darkness go hand in hand!) And while I joke about satan’s role in the lights, remember only Christ brings the true light of CHRISTmas.

I cannot imagine having thousands, maybe millions, of lights to ‘take care of’ each year. Check for blown fuses, loose wires, clean connections, install/hang/inflate, run extension cords, weather proof, etc. It’s a job that takes months!! I can imagine this though, if you are one of those that has made it your yearly tradition to share the joy through lights, you deserve a major award in my books!! The lights cost you time and money. And probably some frustrations as well. But oh how they bring smiles for days to young and old.

Thank you for bringing bright lights in all colors, shapes, and sizes to Jacob’s life.

The Wonder of Christmas

That’s a phrase we hear often. And while Christmas can feel and seem magical to most anyone, wonder makes me think of a child’s excitement, their bright eyes, the element of surprise.

And even though we have a ‘man child’ and sometimes my expectations are that Jacob will exhibit that wonder, often Christmas comes with disappointment because it doesn’t feel like anything special for him. LINK:

The church we have attended for years, just celebrated 50 years of their Christmas production. FIFTY! It is one of those ‘can’t miss’ events for our area. It became so popular early on, that they have 5 presentations over 3 days to accommodate the crowds, even though the Sanctuary seats over 2000 people.

As I’ve mentioned in the past, crowds and Jacob don’t mix. But after seeing the Christmas program in the early 80s, we felt sure he would enjoy it. It is a mixture of secular songs, garland and twinkling lights, enormous Christmas trees, time tested Carols, and always a nativity scene depicting the birth of Jesus.

At some point, a choir member friend suggested we bring Jacob to dress rehearsal. While it might not be as smooth as the first ticketed performance, he’d be able to experience a beautiful program catering to all the things he loves. And for several years, we did just that. And it never bothered him, or us, even once if they had to stop for a do-over of a certain piece. Jacob could squeal with delight or self stem and no one would notice or care.

Not surprising when anything good helps others, word of mouth spreads to the ease of attending dress rehearsal. The church became intentional about making that night easier for those that would have trouble standing in a line for an hour and sitting on a crowded pew. Senior adults and special needs folks were some of the main people a dress rehearsal’s atmosphere would welcome.

However, dress rehearsal started to get crowded and we started asking ourselves if it was still a good option. This year, Mike had the idea to take Jacob but sit up in the balcony. Obviously, it might not be ideal seating for some folks. I was even skeptical that Jacob could enjoy and feel all the excitement. But was open minded enough for us to give it a try. And I am so glad I did!! It was PERFECT! In all the years we have taken Jacob, he enjoyed it the most and so did we. There were a few times in the past, that we’d have to leave early. Not this night. It felt like this 270 voice choir was singing to an audience of ONE—my one and only Jacob.

Christmas with Jacob can be hard. Sad. Frustrating. Different. But that evening made it one of the best ever. It was happy and magical and filled with wonder.

He was mesmerized. I can’t explain the feeling of joy in my heart as I watched him watch the program. And what a program it was!! Toy soldiers, candles, ballerinas, trumpets, a bagpipe, shepherds, a manger, baby Jesus. Over 60 in the orchestra with that many on the drama team as well. It was spectacular in it’s presentation and simple in it’s message. Jesus came to earth, our greatest Christmas gift.

I was so proud of Jacob. I do believe I was the most relaxed I’ve ever been in a public place because he had his own space. The only moment he even started to fidget was when the pastor spoke briefly about the Christmas story. Jacob caught my eye and was waving toward the platform as if to say, “enough of that, get on with the show. MORE MUSIC!”

The show ended with a powerful rendition of Amazing Grace! Jesus came to offer us HIS amazing grace. May your heart embrace the greatest gift ever given this Christmas.

A Walk in the Park

Park, make that Parking Lot. That afternoon, as I approached the parking lot of Jacob’s day program, I saw commotion toward the right side. As I slowed to turn in, I realized the commotion was my son and two staffers. They were basically trying to keep him safe and out of the street. I pulled in, threw the van in PARK, rolled the window down, and opened the sliding door. “Hey Jacob, you need a ride?”

I went on to ask what was going on and one lady said Jacob had wanted to go for a walk. And walk they did, taking a stroll all over, spanning two small parking lots. In buildings and around buildings. He had enjoyed the sunshine, twirling and singing. With ‘body guards’ on each side, as it can take two staff members to constantly redirect him away from the street.

As I stopped, Jacob got in the van as if he was ready to go home. But, rather than sit down, he exited out the other side door! I jumped out and one of the other ladies quickly tried to catch him. He moved between cars, again toward the street. Arms jerking and elbows flying.

I had a hard time getting a good grasp of his arm to get him back to the van. On his own, he moved toward the vehicle fairly quickly. And opened the passenger front door. That was not an option. LINK:

I explained that we were going home but we’d take him riding in just a little while. (This was true. Hi dad and I had already discussed an errand that would take us riding for about an hour.)

He climbed in the van and allowed me to engage the safety lock on his seat belt and we headed home. It was a wild few minutes that ended on a good note. But the what ifs lasted a little longer.

Some days, Jacob likes to go on a walk. Exploring. I’m thankful he can enjoy those moments! I just always have to be at the ready not knowing what he has in mind for the ride home.

As promised, we got to go on a long ride and he was happy the entire time. And so was I!

Precious in His Sight

This Christmas memory is from 2017 but is a lesson that bears repeating.

Our two youngest grands chose to stay with us a few days during their Christmas break. We did all kinds of things and had a lot of fun.

One afternoon we met cousins at the theater and saw the movie, They Followed the Star. That night I was getting Savannah to bed and laid down with her to say goodnight. She was in a chatty mood and quickly the conversation turned to Jacob. She told me that sometimes she is nervous around him and went on to remind me about a time he scared her. She was with me that day. I knew exactly what happened. I saw her frightened face and heard her cries. Oh how I hoped she had forgotten the incident, but it was still in her memory.

We talked about how brave she was then and still is, and how it is okay to have those feelings. I gave her assurance of our presence/protection. As best I could, I tried to explain how Jacob has a harder time expressing his needs, his wants, when he is in pain, or when he is afraid.

I talked about how God made us all different. “I don’t know why God chose me to be Jacob’s mom or us to be his family or why He made Jacob like he is, but, it was part of His plan.” Sweet S (then 8 years old) said, ‘Mary & Joseph wondered why God chose them to be parents to Jesus, too. Just like God made us different, we can all serve God in different ways.’

I have to tell ya—what I thought was going to be a sweet goodnight hug and kiss, turned into a most wonderful Christmas gift. Snuggled beside her in the dark, tears streamed down my face. She gets it. A tender, compassionate heart. Combined with discernment beyond her years.

It is hard to know my son has hurt or scared people. And, unfortunately, he will again in attempts to communicate. I never want anyone to be afraid of Jacob but sometimes his actions make others want to run the other way. And yet, God can use a painful time to bring awareness and understanding.

May we all choose to not focus on the differences that scare us but on how we can serve the perfect ONE who made us all precious in His sight.

Count Your Blessings

One of the constants in our family is Jacob’s unpredictability. From minute to minute I can never be sure if he is going to be calm, relaxed, and happy or agitated, wired, and mad.

Contemplating his next move!

Recently when I went to pick him up there were a number of clients sitting outside at the pick up spot. The Clear a Path post explains the sense of dread that washed over me. LINK:

Pictured is that spot with no clients congregating (as I wouldn’t post pictures of people without their permission). So, in this case, use your imagination to see the amount of space at the entrance/exit minus the two steps down. The area isn’t large and quickly gets small when numerous people are hanging out.

As you can imagine, I went into overdrive worrying about how many of those people Jacob would ‘pick on’ as he came out. He would have no choice but to walk between them. He swung the double glass doors open and walked out to their comments, “bye Jacob”, “see you tomorrow Jacob.”

In my mind I thought, they are going to wish they hadn’t been nice because Jacob is about to ‘give them what for’. Did he? NO. He. Did. Not! He walked right between them never giving them a look. It was as if they weren’t even there, as if they were invisible.

I was shocked and thrilled. It truly felt miraculous. They weren’t invisible to me. They were real and had precious hearts and I wanted so badly for them to know how much I appreciated their kind ‘good-byes’ to Jacob. To thank them for their sincere spirits.

Outside, looking in, others could think that Jacob walking calmly from the building to our van, through a sea of people, was not a big deal. A small accomplishment. Inside, looking out, I can testify that it was huge. HUGE.

This I know, the size of the blessing doesn’t matter. A tiny one or one unusually enormous. Look and you’ll see them all around. Count your blessings, name them one by one.

My heart is filled with Thanksgiving. May blessings of all shapes and sizes fill yours.


Why, Oh Why?

I’m not a morning person and neither is my boy. I woke him up and left the room. Next thing I knew I was hearing loud noises. LOUD. It sounded like he had started a demolition project. I hurried back to his room to see he was lifting television equipment and slamming it back down. Pulling wires and shoving cords and generally in a frustrated state. I got everything back to where it belonged and made sure a program he enjoys was on the TV.

Half an hour later I returned to get him dressed for the day. He was uncooperative pushing me away with his hands and his feet. I put my game face on determined he wasn’t getting the best of me. And while I was frustrated, it didn’t last long and he was ready to go.

Jacob was very cooperative leaving home and seemed to enjoy the scenery as I took a longer route to give him a little more riding time. Once at the center, he got out fairly quickly and walked right up the steps. And then, proceeded to bother the two guys sitting on the bench that he scared the week before! ARGHHHHH…… I jumped out of my vehicle and managed to redirect him into the building. ONLY for him to turn around and yank an earring off the staff member at the check in desk. She wasn’t fazed. I was. Finally after shaking up everyone in his path, he headed toward the kitchen and I back out to the parking lot.

Why, oh why? One day he is almost perfect and the next day just the opposite. I can take him slamming equipment. I can take him pushing me around. I cannot take him being a bully. I get a lump in my throat and tears in my eyes knowing I don’t know how to make it better.

Why, oh why can a few minutes one morning affect your whole day putting you in a downhearted funk? I was unmotivated to start anything on my to-do list that day. A heavy cloud was smothering me. I wondered around the house trying to pick one thing to do. Either a necessary chore or a just-for-fun project. Nothing. Not one thing interested me.

I sat back in my recliner and fought back tears. At one point, our Golden girl, Gracie, came up beside me and laid her head on my arm, searching my face with her big brown eyes. She has such a sweet, sensitive nature. And as I reached to scratch behind her ears, she started licking me. Covering me in puppy kisses. Oh, how God uses His creation to feed our souls.

In an effort to shift my attention, I picked up a book I’ve been reading and opened to my bookmark. My eyes read this sentence, … trust totally in the Lord’s feet. IN the Lord’s feet? Hmmmmm….. I did a double take and reread the sentence – I would lay my worry and trust totally at the Lord’s feet. AT, not IN. Ever skim a page and miss important parts of a sentence? (An indication of my mental state.) In this case, I felt I did need to trust IN. He would carry me, HIS feet would take me where I needed to go.

It was a day where I didn’t accomplish much but I was in a much better frame of mind when it was time to pick up my fella. All because I recognized God speaking to my heart through two unsuspecting sources—our dog and a fictional book.

Why so downcast, oh my soul? Put your hope in God.

Psalm 42:11