In some ways, Jacob is very much like a child. And in some ways, he is like a typical teenage guy.
How you ask?
He likes loud music. Not necessarily the genre that most teens might like, but he likes it LOUD!
He has odd eating habits. Healthy choices aren’t of interest to him.
Usually needs a shave.
He’s content wearing the same thing for 4 days in a row.
He likes to sleep in.
He can be rude to his parents. Wait. WHAT????? Surely, not Jacob.
I’m sure not suggesting that all teenagers are rude. Or, that rudeness only comes from that age bracket. We know that isn’t so!
He will insist, with urgency, that we come to his room. Upon getting there, he will quickly close the door in our face. YES. HE. DOES. Rude, but actually funny at the same time. It happens fairly often, too. He’s trying to make a point that can probably have multiple meanings.
Sometimes though, we are needed. It may be to plug up music. Or turn on a lamp. Or change batteries. Or maybe adjust the speed or turn off the ceiling fan. When we have completed the tasks, he is quick to show us the door.
He is not partial to only us when it comes to being rude. I know, right?
Anyone who has been in our home, for any length of time, and ventured into Jacob’s bedroom, has experienced him showin’ you the door. Some are lucky enough to stay longer than others.
We have learned to tell new sitters, not to take it personally, but that he doesn’t want them to sit in his room. That’s not why he has a nice comfy chair. You are allowed to come in, but when your service has been rendered, he will show you the door.
Friends may want to stop in to see Jacob. Thinking they’ll sit in his room and chat a little. Before long, he is showin’ them the door.
If it’s someone he loves, a family member, sitter, or long time friend, he may offer his cheek for you to kiss him. But, he is just being polite before showin’ you the door!
Years ago, our youngest granddaughter was staying with us and at some point, she said, “Nannie, I need you to go out and close the door. I need my privacy.” At the time, ’privacy’ seemed like a really big word for such a little girl. But, she knew she wanted to be alone.
Indeed, Jacob’s way of saying, ‘I need my privacy’ is showin’ you (and us) the door!
When the dentist checked him though, she decided a x-ray was in order to determine the next course of action. Jacob was wrapped snug on a board, so it made the most sense to keep him secure and move him to the machine. Literally, all hands on deck, we picked him up and carried him through the office for the x-ray.
He was a trooper even though it probably seemed like a wild ride!
The decision was made that the best course of action would be to extract the tooth. That was almost 6 months ago. Circumstances caused us to postpone the appointment twice. Not even once did he appear to be bothered by the broken tooth. Had he been, we would have gotten an appointment for him ASAP.
The day came when we couldn’t put it off any longer. Although, I acted cool, calm, and collected, because I didn’t want Jacob to sense my concern, I wasn’t on the inside! It was an act. Unfortunately, it was a tooth where a root canal had been done many years before. It wasn’t as if we could sit down, wiggle the tooth, and expect it pop out like a baby tooth. No, it was much more complicated than that.
Jacob started out really great. However, before it was over, he pretty much freaked out. I cannot think of much worse than watching your child have to go through something hard. Helpless to mainly watch, Mike and I looking at each other, over Jacob, with pain in our eyes. Knowing he is wondering when will this end?!?! Oh, that one of us could have taken his place. I felt like freaking out, too.
For such a procedure, it took everybody coordinating efforts to get the job done. Starting with us at home, giving an initial sedative before the appointment. All hands on deck, once again, with professionals bending over backwards to make it as painless as possible for Jacob. Two physicians along with their assistants. With two parents looking over their shoulders. What doctor welcomes that? These do as they realize Jacob needs us. Even so, I wouldn’t like it if I were in their place.
I have no doubt that every single person that God placed in our path that day served a purpose in the success of the necessary work. At one point when it wasn’t going as smoothly and quickly as we hoped, I texted my family and zoom friends asking for prayers. They became part of the ‘all hands’ group.
The oral surgeon warned of bleeding, soreness, swelling, and bruising. Suggested an ice pack (which would have only been possible had he come home heavily sedated). She was correct about the bleeding. Not to get graphic, but he doesn’t have the mindset to catch a bleed so it gets all over him, us, bedroom, everything.
So thankful Mike and I are a team. Even though we wish doctors, dentists, and oral surgeons made house calls, we have each other to be there for Jacob. It is a gift to be able to offer reassurance, that we are nearby, by talking and singing to him. And while I believe that we are a comfort, it’s still really hard to watch.
He slept a lot that afternoon, which was timely since the numbness would be wearing off. Had trouble eating and drinking at first. An ice cream sandwich finally did the trick. He was pampered with lots of room service.
That night he slept much better than I did. It felt like I watched him on the monitor all night! Around 4 AM he was really squirming and I was prepared to go in but he finally got still and fell back into a deep sleep. Pain meds every four hours helped a lot.
Early the morning after, I went to a local bakery and bought two dozen-donut holes. It’s a favorite treat that he doesn’t get often. Fresh and super soft, they almost melt in your mouth. He was pumped when he realized what I bought. I pinched them in half and he slowly ate 24 donut holes! You read that right. Twenty-four!
His day got off to a good start as far as we were all concerned! He was hesitant to eat much the rest of that day and for several days. His Granny said he was holding out for more donut holes!!
Today marks four weeks later. Initially, he had a tiny bit of swelling and no bruising. He appeared to be sore for maybe a couple of weeks. I still notice him moving food around in his mouth sometimes. It was a doozy as procedures go. Glad I hadn’t realized beforehand exactly what we would face.
But more than that, I am extremely thankful that it was the hand of God that guided all of those ‘hands on deck’, in the different roles they played, as they cared for my boy and served our family.
In January, the blog post, Picked by God (https://problemfreephilosophy.blog/2020/01/09/god-picks/), featured Jacob’s grandmother, referred to as Mamaw. I referenced what a tough time she’d been through recently. A couple of weeks ago, one of the aides that helped take care of her said she knew Mrs P was declining when she didn’t respond to her, ‘see ya later alligator’ with an ‘after ‘while crocodile’.
Last week, on Jacob’s birthday, she took her last earthly breath. It had been 13 months since an early morning fall in her kitchen, resulted in broken vertebrae in her back. From that point on, she never returned to her home, never stood on her own, never made her famous potato salad or deviled eggs. Never, never, never. Her life took a drastic turn. And she went through terribly hard times we’d never wish on her or anyone.
But today, I want to focus on the wonderful life she lived!
A friend once said that flowers and words are for the living. A year and a half ago, I wrote this poem for her birthday. To take the opportunity to say what I could, while I could:
In just 30 years I’ll be your age. By then, you will have been in heaven for many days. Before you go, whether today or years from now, Thank you for being the best mother-in-law since I took the vow. Your spirit of fun in all you do. The crazy times, oh I didn’t have a clue. Remember Lauri asking how to spell my name? T-e-r-r-i-b-l-e, you told her without shame. Your big pots of spaghetti were always a hit. We looked forward to those times, I admit. Quick to offer to keep our boys, And you never seemed to mind all the noise. A generous heart with all you had, Giving to others made you glad. Your green thumb was a natural gift, Transforming your yard so beautiful and swift. Moving furniture around was a favorite thing to do, Not sure Mr. P enjoyed it nearly as much as you. You were good at painting a room or even the ceiling, Although that paint spill in the den left a bad feeling. Of all the endearing, special traits you display Your laughter is one that can brighten any day. Another year older Momma Louise, Won’t you have a good birthday, please?
This week I shared the poem at her funeral but subbed the following lines for the last two:
My heart is sad, now that you’re gone. Thankful for the promise that I’ll see you before long.
The last time Jacob saw his Mamaw was in December. On Christmas day, we took him to visit her in the nursing home. She was very glad to see him. It was hard for me to figure out how Jacob felt about it though. Mainly because he’d never seen her in a bed. Never seen her ‘look’ sick. I’m sure it was a little confusing for him. It was a visit we were uncertain about, but glad we chose to take him.
Oh, how she loved Jacob. She had a digital photo frame that stayed on her bedside table. Her eyes would literally light up at pictures of Jacob. Always asked us how he was doing. Quick to explain, she couldn’t really say he was her favorite because she loved all of her grandchildren. BUT, he was extra special.
Jacob knew her love for him was deep and wide. Without expecting anything in return. Mamaw was ‘for him’ and did indeed delight in his existence.
It was extremely sad for me that she passed away on his birthday. Quickly, Mike said, “well I think it proves one thing, he was her favorite”. I’d agree that he was that day for sure.
How we will miss that sincere, unconditional love. But, oh how thankful we are that she is more alive than ever because of her faith in Jesus Christ. And Jacob will see her again one day. We will, too.
Special addition birthday update: Thank you so very, very much for celebrating Jacob with us! His day started with mini sprinkle cinnamon rolls –
Last year, Mike found this song and downloaded through Amazon Music. I can’t give anyone credit other than it is listed as Hip-Hop Personalized Birthday Songs by Singing Birthday Card. It’s was fun to play it multiple times for him to twirl and his parents to dance! In your best hip-hop beat, give it a try and continue for three minutes!
Jacob, hap, happy birthday Jacob, hap, happy birthday I bet you thought that I forgot this year But I got you a very special gift this year
Jacob, hap, happy birthday Jacob, hap, happy birthday I realized your birth day was near So I got you a singing birthday card this year
Don’t miss it – I was chillin’, right? I was relaxin’, right? Then I looked up and I got this funny feelin’ right? Like I was missing something Like I was forgettin’ something
I shook my head and then my eyes And figured it was nothing Then I looked up and saw the calendar on the wall And for a minute, I could think of nothin’ else at all In a flash, everything came clear, It’s your birthday, I won’t forget this year
Awright, I ain’t forgetting, yo I ain’t regrettin’ yo I hope you’re ready for the kind of trend I’m setting. yo Ain’t no exception, You get a singing birthday card no matter what month it is So I decided that I’m turning over a new leaf Being forgotten really causes people too much grief In time, I got my brain in gear It’s yo birthday, I’ll still remember next year
Know what I’m saying? A singing birthday card to you In your mailbox, addressed to you Know what I’m sayin?
That’s right, y’all Singing birthday card!
He loves unwrapping presents so that part was super fun. And fast! Musical toys, a pinata, bed sheets (he lives on his bed and loves, LOVES fun sheets), and a special t-shirt.
Lasagna was next and he was pretty excited about that and enjoyed two BIG servings!
He was all about seeing what was inside the pinata. It’s called a pinatagram and had a variety of fun candies. He sampled the Laffy Taffy and decided he liked those best.
And finally an Ice Cream Sandwich Cake to finish off the spectacular day.
It’s a good thing his birthday only comes once a year. We’ve had way more chocolate and sprinkles and ice cream and cheesy breakfast pizza and lasagna and it was all his favorite!
Jacob had several calls from friends and family to sing Happy Birthday to him! Two were FaceTime calls which were perfect. All very special. And so many birthday wishes via Facebook. SO. MANY.
Last night, on Jacob’s birthday, we had an unexpected call learning of the passing of his Mamaw. Mike and I had already decided to wait until today for him to go through his cards as we’d had a full, full day and knew he’d might enjoy them more later. That call confirmed that the celebration was over and we’d resume today. I’ll blog more about his sweet Mamaw another time.
This afternoon was time to focus on birthday cards!! Look at all the cards!! Three musical cards! So much fun. So much love. So much everything!
What a week celebrating with candles and songs and presents and company and calls and messages and favorite food.
We are blessed beyond measure at the love poured on our family. Our boy. Thank you from the bottom of our hearts. I think mine might explode.
My boy forty-one, how can it be? Today is his birthday. Whoopeee!!
Unwrapping the gift is present enough. Sometimes that’s more fun, than all the ‘stuff’.
He is often slow to embrace anything new, More of the same can be the right thing to do.
Music and batteries make him a happy guy. The question now, is what to buy.
He is most mesmerized by a burning candle. But the constant supervision is too much to handle.
Cheese and chocolate are favorite foods to eat. A gift that includes one or both of those can’t be beat.
His birthday celebration started days ago, Lot of singing and special treats, his pleasure did show.
For many years, his approaching birthday made me sad. Not any more. That is history. And, my heart is glad!
Happy Birthday Jacob! I love you so very, very much. Thank you God for this gift, wrapped in your special touch.
His birthday celebration started four days early, with some aunts, uncles, and cousins over for Chocolate Chip Cookie Cake (with M & Ms and sprinkles) and Rainbow Ice Cream. He had to get close to get a good whiff of the chocolate and his Uncle Randy followed suit.
Jacob had oral surgery three days before (notice slight swelling in his right jaw), so I’m studying him when he starts to eat. He loved everyone singing to him! It was perfect.
The following morning (yes, Jacob slept in the shirt he had on from the previous night), Jacob was looking for his cookie cake. It wasn’t where he thought it should be, so he handed me the next best thing – a candle! Sweet fella, wanted me to light the candle and sing Happy Birthday to him again. Of course I did and it started his day off with a smile.
The next day I decided to cook Chocolate Chip Pancakes (yes, notice a theme of chocolate chips!) for his breakfast. Burning candle and singing were included at no additional charge. Again, he loved it. And I sang Happy Birthday over and over again while he ate almost 5 pancakes. He appears to be contemplating his next move. Trying to decide if he’s had enough. Melted chocolate on both hands and his face were signs he happily enjoyed his breakfast.
Yesterday, it was a jumbo bowl of mac and cheese for lunch. With a candle and song:
Being home so much now, has allowed for daily celebrations the past week. I don’t know when we’ve lit so many candles and sang Happy Birthday so many times. It’s been great!! He’s already gotten cards in the mail and a couple of gifts. Stay tuned as I’ll blog about the rest of the Birthday Boy’s day, very soon.
One of the more frustrating aspects of Jacob’s personality is patience. Or the fact that he has a short supply.
I’m not good with being patient. I don’t want to wait. That time I’m waiting could be used for something else.
Author unknown, but I’m pretty sure Jacob has thought it. And I might have, too.
Definition of wait: to stay in a place until an expected event happens, until someone arrives, until it is your turn to do something, etc. : to not do something until something else happens. : to remain in a state in which you expect or hope that something will happen soon.
I really love it when I do catch him in the act:
We aren’t born with it are we? Children are like that. “I want it.” “I want it NOW!” Hopefully, their parents, teachers, and families are able to show them they don’t always get what they want. That they can’t always get what they want. The Rolling Stones said it like this:
No, you can’t always gt what you want.
You can’t always get what you want.
You can’t always get what you want.
But if you try sometime, you find,
You get what you need.
Songwriters: Keith Richards / Mick Jagger
Somehow we have not been successful in teaching Jacob how to wait. I’m not sure what I could have done differently to help him learn. But I hope and pray we are giving him what he needs.
I have been very frustrated lately about Jacob’s demanding nature. Very, VERY. The world revolves around him. He expects us and is counting on us, to help it spin smoothly.
In all honesty, who enjoys waiting? We have been known to take an alternate route to avoid waiting at a railroad crossing. What about scheduling a doctor’s appointment with the shortest wait time in mind? Or paying for Amazon Prime because we want it in two days instead of waiting (gasp) seven???
There are hundreds of verses on waiting in the Bible. Last week, I was reading about waiting on the Lord. And I realized, actually was reminded, that I am often demanding, too. Oh, how impatient my patience can be. Jacob has taught me a lot and one of them is wait on God. He will give me what I need, when I need it. His timing is perfect. Mine isn’t.
The saying, good things come to those that wait, isn’t a specific Bible verse. But, it does summarize what I need more of – to just wait.
In the late 80s, Mike and I attended a Discipline Them, Love Them conference. The author, Betty N. Chase, spoke from a book she had written with proven steps to help parents use Biblical principles in helping grow self-esteem in their children while teaching life-long skills and learning lessons. With better parent-child relationships the goal.
We signed up for the conference with our boys in mind. I thoroughly enjoyed it from beginning to end. She spoke about games and chores and spanking. Consequences and time-out and boundaries, plus a lot more. During a break I had the opportunity to meet her and ask a question that seemed unique to me, “we have two boys. The oldest is non-verbal and very low functioning. The other is ‘normal’. How do I use the strategies on both boys?” Her answer wasn’t profound but helped me tremendously. “Your boys may be as different as night and day but so are most siblings. Find what works for each and put that in your toolbox.” She gave me permission to parent them differently and not pressure myself to compare Jacob and Josh.
Josh was easy to discipline. I felt like he tried to be the ‘perfect’ child because he saw the constant challenges with his brother. Of course, he wasn’t perfect but he understood consequences clearly. It seemed with Jacob that the ‘if you do this, that will happen’ worked occasionally. But more often, no matter the consequence, he wasn’t phased.
Discipline with Jacob is just different. He hasn’t told a lie. Or, stayed out past his curfew. The thing that gets him in the most trouble would be his expectations. And the behavior that occurs when things are not going his way. Those times when he slams the laptop shut when I’m in the middle of something. Grabs my arm when I’m slicing vegetables. Pulls me from a phone meeting to his room. His demands of ‘drop whatever you are doing’ and ‘do what I want right now’, often lead to time out. I know, Time Out? He’s forty years old, how could time out possibly be the chosen tool?
Some kids do well with time out. Almost a welcomed respite to slow their minds and bodies down. Screenshot below is a prime example of him chilling when he was having trouble regulating his behavior.
Over 30 years ago we were at a family gathering and my niece, Natalie, got in trouble and was told to ‘go stand in the corner’. That was time-out before parents called it such. As she pouted and tried her best to cry crocodile tears, her great-grandmother thought she looked so cute that she wanted to take her picture. Yes, she did. “Natalie, turn around and smile!” That time-out sort of lost its effectiveness!!
Another time in more recent years, our youngest granddaughter was staying with us. Her parents had suggested a time-out if she didn’t obey. I don’t recall the offense but needed her to understand she had to do as asked. I placed a small children’s chair in the hallway, explained the why, and told her she had to sit there until I came back. In less than 5 seconds, “NANNIE, you have really hurt my feelings!” “NANNIE, I don’t like it here.” “NAAAAAAAAAAAANNNNNNNNNNNNNIIIIEE!” It was super hard to let time-out play out like it was supposed to for that little angel!
Time-out has worked fairly well for Jacob. Sad to say, we have to use it more often than I like because his skill of waiting doesn’t exist. I can be stirring spaghetti sauce, replying to a text, watching TV, or doing a thousand other things and he will come and get me to do something for him. It is often something that may have already been done multiple times that day. Demanding I drop whatever I’m doing is his M.O. Demanding as in, will not leave me alone until I am complying with his command. Sometimes I can, sometimes I cannot. Sometimes I don’t want to because I already have!
Unfortunately, sometimes it means he has to go to his room, find something else to do, so his focus shifts and he lets up. When his patience has run out and mine has run thin. That is often when a time-out is next.
I’ve not escorted him to his room and said, “Jacob, turn around and smile!” I’m not joking around and he isn’t either. Actually, he is mad! It’s hard to admit, but sometimes, my heart, my feelings, and even my arms are bruised in the process. I am bothered that I have to enforce and he is bothered that he isn’t getting his way. Probably, his feelings have been hurt in the heat of the ‘battle’ as well.
But, I know for a fact, he likes it in his room. Loves it. He just doesn’t love that I didn’t respond appropriately to his, “I want it NOW!” When kids that don’t get their way, well they fuss. And he can certainly put up a fuss to rival the pros.
Being home for getting close to four months, translates to more demands with more time-outs. Some days I get bummed about it and frustrated that he can’t practice patience.
And here he is this past Monday. He could not figure out what he wanted to eat or to watch or listen to, etc. He was most irritable and unhappy. I let him get the best of me. Exasperated, his relentless demands called for the two of us to be separated!!
Then I heard him in his room singing and realized it was actually what he needed.
And what I needed, too. Somebody, please put me in time-out!!
There is no solid cure for autism. There are methods, tools, programs, resources, medicines, etc. to make the life of a person living with autism, better for them and their family. As with everything, what works for one, may or may not work for another.
When you have a non-verbal child, you are desperate for a way to improve communication. In 1992 (going way back), all evaluations listed Jacob as extremely low functioning with an expressive language of a five month old (approximately). He would communicate by bringing an object such as a cup, video, or a book OR by taking you to a item such as the refrigerator, pantry, or car. We attempted sign language with little success.
That year, when Jacob was 12 years old, we heard of a tool called Facilitated Communication.
We made a crude letter board that Jacob used to communicate. Lightweight and easy to manage, we actually had two styles:
These are some of the conversations I documented in the spring of 1992 before the above article was written. The capital letters show when he pointed to a letter on his board. Otherwise, he pointed to a word or phrase on the board.
Mike (M): “Jacob, what do you want?” Jacob (J): G E T V I D E O M: “which video?’ J: S E S A M E S T R E E T M: “which Sesame Street?’ J: no answer M: “Is it Four Exciting Adventures?” J: Yes M: “type it” J: F O U R E X C I T E A D V E N T
Terri (T): “Jacob, what do you want?” J: I want D A D D Y S T A Y A Z G H Y T: “Jacob, I didn’t understand the last word, tell me again.” J: I want S E S A M E S T R E E T
M: “Jacob, Papaw is in heaven and someday I will be and you will be, too. In your mind, do you want to give your life to the Lord?’ J: Yes M: “Do you love Jesus?” J: Yes M: “Does Jesus love you?” J: Yes M: ”What do you think about this?” J: E X C I T E E X C I T E A D V E N T U R E
M: “Tell me what you want? J: I want eat M: “What do you want to eat?” J: I don’t know M: “Try to think of something and I’ll get it.” J: C H E E S E S A N D W Josh (Jo): “He wants a cheese sandwich!”
T: “Jacob, tomorrow is Sunday. Where do we go on Sunday?” J: C H U R C H T: “What do you talk about at church? J: F R I E N D G O D C H U R C H
Jacob had torn a book and was chewing paper. I turned off his TV and told him no video for 15 minutes. Later, he brought me a video.
T: “Jacob, what were you doing that made me have to turn to TV off?” J: C H E W P A P E R T: “That’s right, are you going to chew paper again? J: I don’t know
T: “What’s wrong, why are you biting your hands?” J: I don’t know T: “Are you sad?” J: S A D T: “Is is because you have to go to school today” J: S C H O O L
At bedtime, I pointed to the letterboard and spelled, I love Jacob.
J: I L O V E M O M
T: “Jacob, what do you want to talk about?” J: G R A N N Y T: “Where does Granny live? J: C A M H OU S E T: “Who else lives at the camphouse?” J: G R A N D A D D Y T: “What do you like to do at the camphouse?” J: G O L F C A R T
T: “I love you” (I pointed to the letters as I said it.) J: I L O V E D A D D Y M: “Who else do you love?” J: T E R R I M: “who else? J: I L O V E J O S H
These were over a two week period. Were there more? Yes! A lot more. What did this do for us? It opened our eyes to how much Jacob understood. To how much he paid attention. That he had a larger vocabulary than we imagined or had been indicated during an evaluation.
Leading up to our trip to the Facilitated Communication conference, we had friends and family from far and wide praying for us. For Jacob to be receptive, for us to have open minds to see and learn how we could help. I cannot count all the groups who had us on their prayer list. It was a phenomenal display of support.
Did Jacob continue to communicate in this manner? No. At one point, he rebelled. Got tired of the letterboard and refused. Jacob has his own language and good or bad, he prefers it. There have been some other tools we used and currently use. That’s a post for another day.
A while back I slipped into our church and sat by a friend. In conversation he asked, “how’s Jacob doing these days?” I explained that he was home with a sitter and updated him briefly about day to day life. He leaned in and said, “when I think about Jacob, I think about the whole church celebrating him saying, ‘I love you’.”
He was referring to the Wednesday night reaction of the church’s congregation as they were updated on this very answer to prayer. A congregation made up of dear friends, some acquaintances, and others that had never met us. Celebrating our boy and our joy! THAT, my friends is what support looks and feels like.
I was 18 years old when I found out that my nephew, Jacob, was diagnosed with autism. I remember feeling terribly devastated for my sister and her husband, Mike. And, for our entire family. Back then, autism was a foreign word. I had never heard of it and I’m not sure my sister had either. All we knew was that this sweet baby boy wasn’t going to have a normal life. The hopes and dreams that my sister and brother in-law had for their first born son were changed in an instant with a diagnosis that seemed hopeless.
I found this hard to deal with as a young adult. I was scared of the unknown. I didn’t understand autism and I definitely didn’t understand what having a child with autism would be like. I very seldom kept Jacob. Mainly because he was non-verbal and I was terrified of not knowing what he wanted or needed. It was a struggle to have a ‘relationship’ with him because he didn’t show any signs of affection and didn’t make eye contact. I loved Jacob but didn’t really know how to show him or how to love on him.
Over the years, Terri and Mike have had sitters to keep him for them to be able to have a life outside of autism. They had planned a trip to visit their other son, Josh, and his family. When at the last hour they found out their sitter was sick and couldn’t help with Jacob, as planned.
My sister reached out, asking if I would be willing to stay with Jacob that particular weekend. My first thought was ‘oh gosh, I don’t think I can do this’. However, I immediately felt, in my spirit, that God was telling me, yes, I want you to do this. My hesitancy was not because I didn’t want to stay. But, that I was nervous about being responsible for making sure Jacob was happy and felt secure.
One of the characteristics of autism is routine and structure. Jacob doesn’t like crowds, loud noises, and any changes in his everyday life. He can get very upset when he’s frustrated. Being non-verbal, he can’t tell you what he wants. And, frankly, it can be quite scary not knowing what to do when he is upset. I knew I had to be obedient to God leading me to do this and I knew that I could trust God to be with Jacob and me every moment of the weekend.
I arrived at their home and Terri had written out a step by step guide with instructions and great details for any possible scenario. It was meant to, hopefully, provide me an answer to every question and give me the confidence that I’d need to take care of Jacob.
One of the instructions was to make sure I removed Jacob’s sound machine every morning once he woke up. He loved to hide it from his caregivers so he could be entertained as they frantically looked high and low for this machine that he HAD to have to be able to sleep.
On the last day of staying with Jacob, I woke up early and peeked in to check on him. He was fine and content. I made my way to the kitchen to make him breakfast. All of a sudden it hit me! I had not put the sound machine away! I made a mad dash back to Jacob’s room to find him sitting on his bed acting as if nothing had happened.
But it had ……the sound machine was NO WHERE TO BE FOUND! I panicked looking high and low and everywhere in between to find this valuable object. I knew that my sister would be back that afternoon. Knowing that they would be faced with a search to find where he hid the machine, well, it stressed me out……. I looked and looked and looked some more to no avail.
When Terri and Mike returned home, I had to confess that, indeed, Jacob found the opportunity to hide the machine and it was nowhere to be found! Luckily, they had played that game before and, yes, it is obviously a game to Jacob. He enjoys watching us play hide and seek with whatever he has decided to hide! In his little solemn face behind those deep blue-green eyes, I believe Jacob was laughing! Because he was able to ‘pull one over on us’!
Another part of his daily routine noted in the instructions, was for one or both of his parents to say prayers with him at night. My eyes fill with tears as I recall this special memory with Jacob.
I had gotten him ready for bed and told him it was time to go to sleep. And then crawled in his bed to say a bedtime prayer. Out of the blue, Jacob reached over and grabbed my hand. With tears, I whispered a prayer thanking God for the opportunity he had given me to spend the weekend with Jacob.
You see…… my intention was to help Mike and Terri by keeping Jacob so they could go out of town. But in an instant, I saw clearly that it wasn’t just about staying with Jacob for a few days. God gave me the opportunity to see that although Jacob was born with a disorder called autism, and at times it seems he doesn’t understand or relate to everyday things, he showed me, with a little gesture, that he loved me being there. That he felt comfortable with me staying with him. But more importantly, he showed me that he knew the beauty of the moment….talking to our Heavenly Father, our maker and creator.
This happened over 10 years ago and it will always be one of my most favorite memories of Jacob.
But, I have to share one more blessing that happened this year. Jacob was visiting his grandparent’s house and I went back in his room to tell him hello. As I leaned over to talk to him, he leaned in and kissed me on the lips! THIS absolutely thrilled my soul.
As I stated earlier, at times Jacob doesn’t show emotion and he doesn’t like hugs. Ordinarily, one really doesn’t know if he even knows you are there. But this one time, THIS time, he decided to kiss me! My heart was so blessed!
Thank you Shellie for sharing these unexpected blessings! Your story will bless others.