GOODNIGHT

Watching Jacob sleep is a time of reflection on the past. What are his best memories? Which birthday cake was his favorite? Did he miss his brother when he moved out? Does he dream about times with his grandparents? Does his mind take him to a favorite place to be?

Look at the present day: What made him happy? Did he eat a good lunch? Did someone make him sad? Did he give someone a big smile? Does he have a headache? Which video is he on a mission to find? Was he uncomfortable? Did he scare someone?

And wondering about the future. So many unknowns. I truly don’t know where to start. What will happen to my special needs child when I’m gone is the million-dollar question for so many parents. And a reality we’d like to escape but wouldn’t dare.

If you are a parent, you have memories of watching your child sleep. There is something so very peaceful about the steady rise and fall of their chest. The slight movement of their eyelids. The steady breathing. I’ve had the privilege of watching Jacob sleep for more than 4 decades. And it hasn’t gotten old yet!

Not wanting to disturb him, I don’t sneak into Jacob’s room much at night. But I do watch him through our monitors.

And study him with a smile on my face and a bigger one in my heart. Thanking God for entrusting Jacob Michael to my care.

I have decided to put a pause on my years of blogging. It may be that I’ll pick it back up in the future or this may be a permanent end. I will not be renewing the WordPress blog host so this will disappear soon.

Thank you all for following our journey. For reaching out via text, comments, the blog contact form, or Jacob’s Facebook page. Truly I’m overwhelmed at the encouragement that has always come at the perfect time and the countless expressions of love showered on us. You’ve been a most wonderful community of strong support. I will continue the Facebook page: Jacob’s Problem Free Philosophy when I just HAVE to tell a story about our boy.

Lullaby and goodnight
Now the day time is over
Time to slip off to your dreamland
I will keep you safe and warm
Lullaby and goodnight
There is nothing to fear
Lullaby and goodnight
When you wake I’ll be near
A version of Brahms’ Lullaby

May your heart smile knowing the enormous blessing you’ve been to our family.

Goodnight. Sleep tight. Now, this blog posting is over.

July JOY

We celebrated my July 1st birthday during an out-of-state get-away with friends. Playing games, enjoying the beauty of God’s earth, lots of laughs, and delicious food. Cheesecake. Scrumptious Cheesecake!! And, more rainbows than I’ve ever seen. It really was a great, great day.

Then I got one of the most amazing birthday gifts. On July 3rd, I became a great-grandmother to twin girls. I’m totally in love! Yes, you heard that right!!! They are 11 days old today and doing quite well for their darling preemie selves. I cannot wait to snuggle with both in a rocking chair while reading them a story. What an adventure awaits our family to see them grow, learn, and mature. Praying they learn from an early age how very much their Heavenly Father adores them.

On July 9th, Jacob turned 43 years old. Still seems impossible but I was there, it is true. He had cinnamon rolls with chocolate milk for breakfast. He was a very happy birthday boy. The rest of the day mainly consisted of chocolate!!! And toys.

Moving right along, on Tuesday, the 12th, my mom prepared a Shrimp Boil belated birthday lunch for us. Shrimp with potatoes, sausage, and corn! It was delicious and the two of us being together in the kitchen made it even better. Then, THEN we had a Fresh Peach Dessert. Angel Food Cake with ripe peaches. Perfection!

It had been a while since Jacob had been to his Granny’s so he thoroughly enjoyed himself. He was nosy as could be opening every cabinet door and every drawer. He picked the spicy sausage out of the shrimp boil and drank chocolate milk that his Granny had gotten just for him.

This is Jacob’s “I don’t want to leave” posture.

Next, our other son and his bride will celebrate their anniversary this weekend. So proud of them and their commitment to each other. They’ve taken what God has given them and been wonderful stewards. I’ve told them many times that they’ve done more ‘parenting’ than I ever dreamed of.

Then, comes July 18th. One year ago on that day, my dad took his last earthly breath and woke up in heaven. In some ways, it still doesn’t seem real to me. But, it was his best day ever.

Can’t leave out more family- our brother-in-law and nephew share their birthday next week. Happy Birthday S and Z!

It has been four weeks since I’ve gotten a blog out. As you can see, we have had a lot going on not counting projects and all the other things we can’t escape. Seems life is a speeding train or roller-coaster ride right now!

When I reflect on the last few weeks, my heart smiles at the blessings of friends and family who have shared in our joy.

COVID Caught Us

Dodged it for over two years and then it snuck up on us. All along I had been quite afraid of us getting it simply because the thought of Jacob being hospitalized was an awful fear.

We were happily living life and not aware of any of our close contacts having covid lately. Falsely believing it was history, masks were put away, and sanitizing wasn’t the first thought after being in public.

After a few days of all-day headaches, a nagging cough, and a scratchy throat, I decided to visit my doctor. When the check-in nurse asked if I wanted to have a covid test, I answered, “sure, I’ve already had at least 4, might as well check”

Mind you, we had a supply of covid tests at home. It never crossed my mind to check. Felt like I either had strep or a sinus infection. Imagine my surprise when I got a text notification of the results:

I texted my man in shock that I had tested positive! And immediately started worrying about Jacob. His care requires direct close contact. My doctor instructed me to go home and quarantine.

The sore throat was my main complaint making me crave smoothies and ice cream.

Two days later my man tested positive. At that point, we felt like it would be miraculous if Jacob avoided it. In our case, Jacob’s swab proved he also had it so all three of us were taking it easy with differing but minimal symptoms.

Thank the Lord, we managed very well with only mild fatigue and a lingering cough sticking around for a short while. We had everything we needed!

Jacob was really good and easy those days. Mainly enjoying mail, magazines, and chilling out in his room listening to music and watching tv.

Within days of my positive test, many of our friends, some family, and acquaintances also got the latest variant. We were part of an uptick and hope it was enough to keep us well for a while!

It did take a few things from us: 1) We had bought tickets to see a Christian Comedian in our area and didn’t get to go. 2) Much to my dismay and my husband’s joy, we didn’t get to participate in our annual neighborhood garage sale. 3) We missed a graduation celebration that was a really big deal. 4) And, a granddaughter’s flute recital. Bummed out but not beat down.

We have so much to be thankful for personally knowing too many who had a tough case. And pray for the families of those we knew who weren’t spared, exchanging covid for their heavenly reward.

No matter what surprises are thrown your way, it helps to slow down and take time to find the positives in your situation. The convenience of ordering groceries online comes in super handy during quarantine! A friend dropped off a meal that lasted for days. Highlights were a Chicken and Rice Casserole and a Coconut Cake that both hit the spot. Taking it easy at home meant more naps and reading time.

And puzzles! I had quite the collection and figured there was no time like the present to exercise my brain.

Jacob loves the door puzzle. He watched it come together and studied it closely upon completion. I plan to try to hang it in his room for continued enjoyment. (Side note – Jacob loves that t-shirt and pulls it out to wear often – in case you noticed.)

Sometimes being forced to change plans and stay home can be a blessing.

Give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:38

God is good. God is good all the time. All the time God is good.

Communication Cans

Recently Jacob has started getting a can out of the pantry and bringing it to me. The first time was a 2 lb. can of whole kernel corn. That’s right. Okay, maybe he will eat it. I pointed to some other options but he was set on the corn. So I opened it, spooned out a little, added some seasonings, and heated it. That didn’t take long but by the time I offered it to him, he acted like I was crazy. I convinced him to take a bite and he literally spit it out and handed it to me.

The remaining corn went in a container and into the freezer for soup I’d make another day.

The next two times he’s done it, he brought me this:

I suppose, there were no more cans of corn!

Now, I know without a shadow of a doubt that he doesn’t want Rotel Tomatoes. And I don’t believe there is any dish where I use them as an ingredient that he will eat.

The first time I assumed, he was looking for a can of something else. I offered him pineapple and he pushed it away. Seemed a Hershey bar was really what he was hungry for—what Rotel had to do with that is a mystery.

Then a few days later, here he comes with the Rotel, again. We went and looked in the pantry and I got out the pineapple chunks.

Bingo. I opened the can and spooned about a third in a bowl, rinsed the syrup off, and he got busy. Repeat twice and he had eaten the whole can for an afternoon snack.

Communication comes in all forms. The easiest thing for Jacob is to find what he wants and show us. Sometimes it takes a time or two before we can figure it out.

He Doesn’t Miss a Thing!

When Jacob seems aloof and a million miles away—you can be sure, he knows what is going on!

Jacob’s current MP3 player is working really great as far as his enjoyment. The player holds 445 songs. There are days he happily lets it play through and he hears a variety. However, most days, he wants to listen to song #1 over and over again. And he needs us to help him get back to that song. The odd thing is, as soon as we do, he will walk away, clicking through to another song, but he is usually content to settle with our help for a few minutes.

Ignore date – I’ve listed when we started using this one.

There is a problem though. He is hard, HARD, on his things. We will see him via the monitor just toss a player across the room. Steady it on something to push it off. No wonder they don’t last. His brother was in town a couple of weeks ago, he’d been upstairs and commented that there is a graveyard of those very players. He is right. I’ve lost count of how many we have bought.

But even when it seems to be playing just fine. Jacob will be sure it needs fixing. Several times a day, he will bring it to us and tap the back, wanting us to ‘do something’. He does the same with his player at his day program. He will get very frustrated if we don’t proceed to work on the player.

Not long ago, he had taken me back to his room and opened a drawer. He hands me this screw.

He has determined that might help in its repair. Now his dad has taken many of these apart but they don’t use a screw this big. We don’t know where it came from, how it got in his drawer, or what is missing a screw! Jacob knew it was in his chest of drawers and quickly had a solution. Taking it from him and showing him it didn’t fit in the player seemed to appease him.

And then, there is this toy. Touch Magic Ocean Music School. He has probably had it 8-10 years. It is a really nice toy—can be annoying if he has it in the van and pushes the same button over and over again but that hasn’t happened much and is a small issue for the amount of pleasure it has brought him.

For some reason though, he constantly wants us to replace the batteries. He will bring it to us, flip it over and tap on the battery compartment. I will flip it back over and touch a button to show that it works just fine. Not to him. I admit there have been times, I would have to hide the toy but he couldn’t or wouldn’t relent until there were different batteries in place.

On a particular day, he was bent on new batteries. So to check, I pressed a button to listen. Then I did as it said, and pressed the trombone. It started playing. And then, THEN, the toy we’ve had for years said “it is time to replace the batteries.” Yes. It. Did. We’ve never been patient enough to let it play more than a few seconds to determine, that it did NOT need batteries. Whether Jacob had heard that OR was ahead (since he is a battery expert) he seriously knew the toy wasn’t performing as it is supposed to.

He knows his toys. Perhaps we should listen more and react slower.

Lastly, Jacob’s main sitter has been with him for years and can usually figure out what he wants. We got home one night and she said, “Jacob brought me a reminder card and wanted me to do something with it.” “I wasn’t sure if he wanted me to call the number on it or what.” “He also showed me the VCR as if it went with it.”

Okay, here is the thing—Mike uses that card or one like it to clean the head on the VCR. Yes. He. Does.

Yesterday Jacob needed me in his room and as I entered, I could hear a video playing but the image wasn’t showing up on his television. I commented that there was a problem and we’d need dad to look at it. He hit rewind on the VCR and I thought that might be the fix. Shortly afterward, I heard Mike say, “you are SO smart“! Looked in and Jacob had once again, taken the card from a drawer and handed it to his dad knowing he needed to work his magic for a video to play. We were so impressed.

Whether Jacob is looking out the window, twirling in circles, or self-stemming, seemingly in his own world, he doesn’t miss a thing!!

Season of Stress

We’ve gone through a rough patch with Jacob over the last month. Seems he would wake up mad. To say, ‘he got up on the wrong side of the bed’ is an understatement. The word rage comes to mind.

Recently, I had a check-up and was explaining to my doctor that I felt like I had wrestled a bear that morning. It was only 10 A..M. and I was exhausted. Dr. C started talking about how stress makes inflammation worse. My mood, emotions, and posture all reflected a sense of defeat. “We have to look at what can help you. Since your situation isn’t going to change, you might need a medicine to help you have better days.” Honestly, I do not like being told I need to swallow a pill to help me parent.

I’ve read that mothers of autistic kids can have stress levels equal to soldiers in combat. Sounds like an exaggeration, doesn’t it? Key word – CAN.

Stress will compromise my health.
Stress will make me sick.
Stress will cause physical pain.
Stress will shorten my life.

Some days I would agree that autism seems like a war zone. Jacob isn’t throwing punches but I still feel battered. It hurts deeply to love him so much and not be able to fix what is causing his behavior.

And then I notice my behavior isn’t great either. Sad. Depressed. Neglecting self. Apathetic. Tired. Becoming negative and someone I don’t like. Surprising myself at something I would say. Less compassionate. Less tolerant. Less understanding with family and friends. Shorter temper. The reality is, that in my case, there are seasons when medicine is a wise addition to self-care.

Sometimes I will choose to not do the right thing or what needs to be done because I don’t have the energy to follow through. I have to accept that I am not superwoman. Don’t have to be. Shouldn’t try!

I read a devotional in New Morning Mercies, a book by Paul David Tripp, and on this one day, in particular, felt like it was written just for me. The last chapter says this:

Paul is arguing that God’s gift of and sacrifice of his Son is your guarantee that he will grace you with every good thing you need until you are finally free of this broken world and with Him forever in eternity. You do not have to wonder about God’s presence or his care. You do not have to fear that he will leave you on your own. You do not have to wonder if he will be there for you in your moment of need. When you give way to these fears, you commit an act of gospel irrationality. If he gave you Jesus, he will give you along with him everything you need.

I was reminded that in the midst of calmness or chaos, whether serene or stressed, I am never, ever alone. I have Jesus.

In my worn-out state, I always wonder what Jacob might be feeling and/or thinking to make him lash out. Is he stressed with his mind in turmoil?

One hard morning, it was just the two of us in the van, I sang this chorus to him on our way to his day program:

Lord, You are more precious than silver.
Lord, You are more costly than gold.
Lord, You are more beautiful than diamonds, and
Nothing I desire compares with You.
Lynn DeShazzo

Even though my voice cracked and my eyes filled with tears, I could sense him relax.

Thankfully, the past week has been smooth sailing with precious Jacob. We have definitely enjoyed peaceful days.

Even when I don’t acknowledge it, I am certain that we have been given everything we need. (Remember need and want are two very different things.) Thank you, Lord, that along with giving me Jesus, you daily supply my needs!

Assignment

Jacob opened the refrigerator and pointed toward the top compartment on the door. I reached for the bologna, sliced cheese, and mayo to make him a sandwich. He watched as I got the loaf of bread, put it all together, cut it into quarters, and plated it up. He took one bite and handed it back to me.

“But Jacob, this is what you wanted. This is what you picked to eat.” He was not having it. He started waving around hoping I could read his signal.

I opened the freezer and pulled out two packages of frozen Sausage Biscuits. He watched as I put them in the microwave and selected 1 minute, 20 seconds. Seems I read the signal correctly. While they heated, he casually thumbed through a magazine. Once warm, I stuck them back in the freezer for a quick cool down so he could eat soon. That didn’t take long. I opened a package and cut it into bite-sized pieces and put it on his plate. He immediately handed it back to me.

He was frustrated. So was I. He opened a drawer and handed me a snack-size Hershey bar. “No, you chose bologna cheese. You’ve got to have something to eat other than chocolate.”

Jacob goes to the refrigerator and again, points to the sliced cheese. I point to the already made bologna and cheese sandwich. He is adamant that he doesn’t want it.

And then, then I catch where he looks. At the oven. CHEESE TOAST!! That day, I totally missed his cue. He will often point to the cabinet for me to get a pan. And usually wave in that direction. I did not see him waving toward the oven.

What is it like for him to not get his point across? To not get what he is ‘asking for’? When his attempts at communication fail? To be misunderstood?

Bless his sweet, silent heart. I made him six pieces of cheese toast. He patiently waited for them to cool. And then he dug in. He was practically humming he was so happy. He folded and ate the center out of each piece as he ALWAYS does, spreading his toast across the bar. Then he proceeded to eat every single bit, crumbs and all.

And as he did, I have a feeling he was thinking to himself, FINALLY!! Mom understood the assignment!

So Good!

One of Jacob’s favorite meals is lasagna. He will eat Stouffer’s when the mood strikes, but homemade is always preferred.

A couple of weeks ago, we were having Supper Club at our home and providing the entrée. I decided I’d make two kinds of lasagna. Not that we needed both but knowing leftovers would be welcome, it was the way to go.

I have two beef lasagna recipes that are both delicious. Here is the recipe for the beef lasagna I prepared for friends. I don’t recall where I got this recipe but it’s fun to make because it has ‘extra’ ingredients. Don’t be intimated by the ingredients list!

LOADED LASAGNA

1 1/2 lb. Ground beef
1 c. chopped onion
1 c. chopped bell pepper
2 cloves garlic, crushed
1 (28 oz.) can tomatoes
3 (8 oz.) cans tomato sauce
1/2 tsp garlic powder
1 Tbsp basil
2 Tbsp oregano
1/2 tsp seasoned salt
4 bay leaves
Salt and pepper, to taste
*1/2 lb. fresh mushrooms
2 Tbsp butter, melted
9 lasagna noodles
1 egg, beaten
2 c. cottage cheese
2 c. Mozzarella cheese, shredded
1 c. Swiss cheese, shredded
1 (14 oz.) can artichoke hearts, drained
1 (6 oz.) can ripe olives, drained and sliced
1/2 c. grated Parmesan cheese

Cook beef, onion, bell pepper, and garlic cloves in a large Dutch oven until meat is browned. Drain. Chop tomatoes adding to the meat mixture along with the next 7 ingredients. Reduce heat and simmer for 1 hour. Remove bay leaves.

Slice mushrooms and saute in butter; drain. Set aside. Cook noodles according to package directions; drain. Set aside. (I usually remove noodles and lay them in a single layer on wax paper.) Combine egg and cottage cheese, mixing well; set aside.

Spray a 9×13-inch pan with cooking spray. Spread 1/3 of the sauce in the pan. Arrange 3 cooked noodles on sauce. Layer 1 cup of Mozzarella cheese and all of the cottage cheese mixture over the noodles.

Top with 3 more noodles. Spoon 1/3 of sauce over noodles and top with mushrooms, artichoke hearts, and ripe olives.

Layer the remaining 3 noodles, Swiss cheese, remaining Mozzarella, and the last 1/3 of sauce in the dish. Cover and bake at 350F for 45 minutes. Uncover. Sprinkle with Parmesan cheese and bake an additional 15 minutes. Serves 12.

Jacob was quite happy that we had leftovers! A day or two later, he had finished two good-sized servings and reached for his IPad. Pushed a button marked, So good. And we heard a male voice say, “that is so good“. It was the best moment!! I was so glad my sweet boy was enjoying every bite of the lasagna I made with him in mind. And he used his device appropriately to tell me!!

The chicken lasagna dish I made is my favorite. I try to eat gluten-free and discovered this recipe about 6 years ago. It has a lot of steps but everyone who has tasted it really likes it. Here’s the link if you are interested: https://low-carb-news.blogspot.com/2014/08/chicken-mushroom-bacon-lasagna.html

*Note: because the chicken lasagna also called for mushrooms, I omitted them when I made the beef one this time. Jacob likes it either way but since the chicken one called for mushrooms, I decided not to include them in both. Not that readers care but a couple of people who were in attendance that night might catch that!

Honestly, I didn’t offer this one to Jacob because he is such a fan of the beef lasagna. After all, according to him, it is soooooo good!!

Has Anybody Seen…

Jacob came home from his day program and before he got to his bedroom, pulled his shoes off and gave them a toss. I was positive both were in our den. Later I went to put them away and could only find one.

Where they usually land when he gets home.

He has several pairs of shoes. But this pair is a favorite. Probably ours more than his because of the ease of slipping them on. I did a quick search to no avail. Decided he’d have to wear a different pair the next day and I’d focus on finding them over the weekend.

Which I did. Major search. Not find the missing shoe. Anywhere he had access to, I searched high and low! No kidding. I had a flashlight looking under beds and couches. On closet shelves and behind furniture. In drawers! Cabinets.

We were trying to remember where I bought the shoes. His dad was searching Amazon to see if a replacement was available. See what I’m talking about?! We really hated to lose those shoes. Could one have possibly been thrown away? We went to Walmart to check the shoe department. NO luck.

I had resigned myself to the fact that the missing shoe was long gone.

I don’t recall how many days (or weeks) had passed, but early one evening, Mike and I were watching TV in our bedroom, and I had my phone on Jacob’s room monitor.

When what to my wandering eye should appear?
It looked like a shoe just laying on the floor.
I jumped from my chair to be very clear!
Indeed, that missing shoe was right by his door.

I don’t know when I’ve been so shocked to see something that had been missing. I really felt like I covered every possible nook or cranny where he might have hidden it. How could it just show up? How I wish I’d been watching to see where he got it before he tossed it toward his closed door.

You all know Jacob has hidden things before. Not long after the shoe was discovered and back in use, I feared one was missing again. I went to pick Jacob up one afternoon and D at the front said, “it’ll be a minute. Jacob took his shoes off and they are looking for them now.” Uh-OHHHHHHHH. I wasn’t surprised to hear he was in his sock feet. And was perfectly okay with that. But I was a tad concerned that we’d come home without one shoe because – he finds joy in hiding things. Has anybody seen Jacob’s shoes? Happy ending, both shoes were found and so far, both are in circulation!!

Funny how a shoe could make me so happy. It was really worthy of a celebration!

Awesome Aunt

While growing up, did any of you have thoughts of who you might live with if something happened to both of your parents? Just me? It wasn’t in a morbid sense of mind. It was having a plan!

The family I wanted to live with was my cousin’s. She’s less than a year younger than me and I loved spending time with her. I declared that we’d make perfect sisters. (Nothing against my own who is 4 years younger! But you understand, that gap is huge when you are 12.) Her parents, my aunt and uncle, were amazing. Had similar values as my family. I guess being at their house, felt similar to being ‘home’.

That plan never became a reality but it is a sweet memory to hold dear. My precious uncle was taken way too young by pancreatic cancer but my aunt is still an important presence in my life, my family.

Recently, she dropped off a few things at our front door. One was this book:

She thought we might enjoy it so was passing it along. She, nor I, had any idea how much Jacob would love it, though. It is Jacob’s ‘kind’ of reading material. Every page is slick. Pictures galore. Some full spreads of color.

Jacob will slowly turn the pages. Sometimes he will point to a picture and want me to tell him about it. Sometimes, parts of his meal will get lost in the pages. Some nights when it is time to go to bed, he will hold on to it tight, not ready to give it up.

It is so obvious how her simple gesture has brought him so much pleasure.

And, my heart smiles big that the story of Billy Graham, one of the most influential Christian leaders to ever live, has a place in our home.

I want to be the kind of awesome aunt that she is. Generous. Thoughtful. Prayerful. A Fighter. Warm. Hopeful. Courageous. Hospitable. And so much more!

Aunt C, I am so very thankful that I get to call you mine. Even if you do love to tell the story of me crying so bad in the car when I was little that you wouldn’t have had children if you hadn’t already been pregnant with D.

We all love you so very, very, very much.