Always on My Mind

Our thoughts can become focused on so many different things. New restaurant in town? Check out the menu and head there soon. School? Classes, friends, exams, the future. The job? Tasks, schedules, guidelines, expectations. Newborn baby? Long nights. Short years. Favorite book? Can’t put it down. New home? It’s the dream one!

True love? Always on my mind! As it should be.

One of the aspects of having a child that cannot take care of themselves is making sure their needs are being met. I think it is safe to say that universally, moms and dads approach parenting differently. In one family, the mom may be the disciplinarian and in another, it may be the dad. In one family the dad orders the pizza and in another, it may be the mom. Family dynamics vary and there isn’t one that is solely correct.

However, it seems when it comes to emotional connections, most of us Mama Bears are just wired with a heightened sense of responsibility. Caution. A sixth sense. An internal clock. A duty that won’t go away. Dear dads, this does not in any form or fashion suggest you are not connected to your child emotionally. Or in any other way. I watch men in both of our families and am in awe of the example they set. All I am saying is this, in my personal experience, I cannot let go or ignore some things as well as my Mr. Man. Maybe it is just me. Part of being a parent is becoming selfless. Responsible for what God has entrusted to your care. And, whether you have toddlers or your children are grown with children of their own, a parent is always a parent. Our families are of utmost importance no matter the age. Agreed? Thought so.

Here’s the thing I’ve come to realize. Jacob is always on my mind. Not every second of every day. But a large portion. Every day there is a mental checklist. Responsibilities to be carried out for his well being and sometimes for ours. I am making sure he is being taken care of, he is where he is supposed to be, he is safe, he is fed, he is comfortable, he has taken his medicine, he has a sitter scheduled when needed, he goes to bed, he is well, he is…, he is…, he is…. Get my drift? It is hard to be fully present when the checklist consumes our minds. Thankfully, we have a plan in place where there are others who step in for me from time to time. I can be away and return home realizing I didn’t worry about him while I was gone. Yes, I thought about him and may have called to check in. On my mind but not consuming my thoughts.

The main lesson in Marriage 101 is put your spouse first. Before your job, before your favorite team, and even before your children. As a spouse, we hope our partner is always thinking of us. Right? We’ve seen families where the children are the center of the universe and often it isn’t pretty. What happens though when demands of that child or children require more than the usual attention? Beyond the 20 years when they hopefully set out on their own? When they are not capable of following the path of self-sufficiency? How do you find that balance of investing in your mate or yourself?

I remember early on coming to the realization that often a child with special needs is being raised by one parent. Sometimes the all-consuming nature of raising that child, sadly, can destroy a marriage. Every marriage takes work. Every marriage is hard. I’ll go out on a limb and say that every marriage that produces a disabled child has to work extra hard. If your husband or wife got to the point that they couldn’t help carry the load, share in the decisions, decided to throw in the towel, I am truly sorry. My heart hurts for you. Let others help bear the weight when you feel it heavy on your shoulders. There are also those that are single and made the conscious choice to adopt a special needs child. And, what about families where the mom or dad of the child has passed away? Hard scenarios that seem impossible. In any case, we have what it takes to ‘just do it’ when it comes to raising our child(ren). Use every resource available to help you navigate your situation.

I like what the Bible says in Philippians:

Rejoice in the Lord always; again I will say, Rejoice. Let your reasonableness to known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there any excellence, if there is anything worthy of praise, thing about these things. Philippians 4:4-9

It isn’t normal or healthy to constantly fix your mind on your child. The mental space dedicated to them can completely take over snuffing out potential for relationships with family and friends. The emotional toll will drain and exhaust you. Yes, I’m telling you, it will. I have learned to be intentional with respite care. Plan date nights. Call girlfriends. Sign up for a class. Take up running. (Not happening.) Reach out to others. Develop a hobby. Memorize scripture. Throw a tea party. Escape in a book. Meet friends out for dinner. Schedule a game night. Take care of yourself!

Always on My Mind is a love song we’ve heard for decades. The story of ‘well I did something stupid but you were always on my mind’. Meeting family needs is a balancing act. Give your loved ones the attention they deserve but remember to be your best, you can’t obsess. Think about these things.

Do Try This at Home

So many of the things that bring Jacob pleasure require batteries. Through the years we have spent a small fortune on batteries. We use rechargeable ones as much as possible. I am not exaggerating when I say Jacob is a battery expert. Not as far as what type of battery performs the best or the longest. But he can detect WAAAAYYYYYY before we can when a battery is weakening. If he were able to keep data, he could have a job as a toy tester!

At least 15 years ago there was a V-Tech toy that he loved. It had this one button that when pushed, would say, ‘ya wanna be a V-tech star?’. It was his favorite and he played it all the time. It is the first toy I distinctly remember him wanting batteries replaced before we thought necessary. And in his determination, would not leave us alone until his mission was accomplished.

There are numerous toys and musical books that he’ll bring us, or a sitter, and pretty much demand that we replenish batteries. One thing he loves, that falls in the toys category, are musical books. You know those books with a strip on the side that has various pictures that can be pushed to play sounds that coordinate with the story? Yes, those. They are powered by tiny button cell batteries. Often the books will wear out (or pages get torn up) way before the musical strip. Jacob expects the strip to perform a certain way and when it doesn’t, he wants the batteries replaced. Like, NOW! I cannot count the number of times that we (or his sitters, at our suggestion), have had to hide the book and/or musical strip to distract him because it obviously still worked and replacing those button batteries isn’t a quick fix. And, when we have changed the batteries, it sounds exactly the same. To us.

Jacob has loved a keyboard for as long as I can remember and has had a nice size one, on a stand in his room, for many years. Obviously he cannot bring it to us when the batteries need replacing. At times, we have used an adapter to plug it up but found that rechargeable batteries worked better than an adapter that he can easily unplug or dislodge. So, when his discerning ear told him new batteries were needed, he’d come get us taking us back to his room pointing at the keyboard. Easy to understand and remedy.

Recently though, instead of taking us to his room, he would appear with a battery in his hands. One (of six) he would have removed from the charging station. His way of saying, ‘please, put fresh batteries in my keyboard’. Again, easy to understand and comply. The only time it’s frustrating is when you’ve just replaced batteries a few hours before. Seems battery performance is not always the problem!

Left On/Off button missing.

Bringing us a battery means, ‘I need you to come fix this’. Sometimes, it clearly wasn’t the keyboard batteries but him having removed a button rendering him unable to play a certain tune or sound. Whether the removal was on purpose or not wasn’t clear but replacing it becomes urgent. Numerous times I have crawled around on the floor, looking under furniture and every other place searching for a really small silicon button. Surprisingly, I could pop the button in and he’d be satisfied.

By now you know that Jacob is gifted with an extra portion of tenacity. He gets something on his mind and his focus is sharp, steady, and unrelenting. That is a such a wonderful trait to have. But, can certainly be an unwelcome interruption when we have something else going on. He does a couple of funny things to get your attention. First, he will lean in and kiss you. Bless his sweet heart. Well, of course I’m going to stop what I’m doing. Who can say no to a, ‘I’ll be your best friend if you help me’ kind of kiss? Not me, and he knows it! Second, if I’m reclined in the recliner, he is going to reach down to release the lever to lower the foot rest. Of course, I cannot be of any use to him in a reclining position. Now it’s his turn to help me so he’ll do what it takes to get me up and moving faster!

Such was the case recently. Mike and I were watching TV in the den. We had both already been to his room, at his request, to fix something. More than once. Often we’ll take turns coming to his rescue. We heard Jacob heading back to the den, I looked around and Mike had thrown a blanket over his head. I died out laughing!! It was quite a good camouflage in his attempt to hide from Jacob. Now go ahead and admit it—you’ve probably hidden from your child for various reasons. Won’t mention names, but I’ve heard stories from J & A about them hiding in their laundry room to eat sweets they didn’t want their kiddos to know they had! So next time you need to hide, you might want to try this at home. Maybe throw a blanket over your head. It didn’t fool Jacob (or Gracie) but it’s worth a shot!!

This week, Jacob removed a button from his keyboard again. In the past, I have been able to locate and replace it. Not so lucky this time as it was no where to be found. And replacing batteries was not the answer. He got so frustrated, that I had to remove the keyboard from his room to redirect his attention. The next day while he was away, I fashioned a button out of putty. I knew it wasn’t going to make a connection but also was quite certain the other times I put the original button back in place, it wasn’t doing anything either.

Left On/Off putty replacement button.

Keep in mind, neither Mike or myself can operate the keyboard. Yes we can turn it on and off but that is the extent. Jacob can push buttons to find the built in songs he wants but we have yet to be able to repeat his actions. So, we’ve never been positive how a ‘missing button’ would affect his concerts. Either way, the button was a decent match and I couldn’t wait to see his reaction. When he came home, I complied with his new battery request. Didn’t point out the new button but he seemed pleased as I watched him turn on the keyboard. For a solid two hours he played it with great enjoyment. At this point I’m feeling pretty good about the fake button and thinking I’ll paint it later to be an even better match. That evening, Jacob’s sitter came over and we left for a date night. Arriving home, she told us he had removed the button and she wasn’t able to find it. Neither could I. Here we go again …

Seems I need to be prepared to hide under a blanket or dash to the laundry room. Which would you recommend?

I Don’t Like You

But I love you.

Ever felt that way? There are days that Jacob just puts me to the test. I’ll do something that obviously he doesn’t like, doesn’t agree with, or just makes him mad and he reacts. Negatively. Can’t make everyone happy all the time. I am bound to get a reaction out of him. And it is usually physical. He may bite his hands or stomp around fussing. Or, direct his frustrations toward me and may grab me, pull on my clothing, dig fingers into my arm, slap (not with open hand force)/swipe at me, etc. All annoying things that I could do without!

If you had siblings, cousins, or neighbors that you played with as a child, you probably played some sort of chase or game to antagonize the other. If I remember right, there was something we did chasing each other—getting a good tap in and saying, “touched you last”. Jacob has a thing about having to touch us last. He has to get the last lick in. Not that we are punching each other but seems his nature is, ‘I have to touch you last’. Sometimes it is funny.

But not always. There are days he absolutely brings out the WORST in me. That’s the brutal, honest truth. Seriously, I take all I can and then I don’t like who I become. Please tell me I’m not the only one who can become a dreadful being no one wants to be around. And especially not claim as their mom! Shameful when I realize my behavior has set a really crummy example. I let him get the best of me and it is maddening. He knows which buttons to push. Don’t your children know those buttons?

Last night he got me good as we were getting him ready for bed and I walked out of his bedroom MAD. (Brutally honest.) I may or may not have slammed his door on my way out. This morning I felt like his mood matched the one I was in last night. It was a painful reminder and I deserved his attitude. He proceeded to show out. It didn’t take long though and he calmed down and seemed to be in a better mood. But as I was trying to get him moving toward the garage, he had to get in one more swipe at me. ‘Touched you last!’ This time, I was able to laugh it off. He deserved some grace.

“I don’t like you, but I love you.”

Could be Jacob singing to me or me singing to him. You pick. I have a feeling he thinks it as often as I do. Thankfully love runs deep and we don’t have to always like each other.

Updated with photo added March 9th. We went out to eat last night and this was from my fortune cookie. I literally laughed out loud. Some would say Confucius is trying to tell me something. I think God has a sense of humor. Mike assured me Jacob will let me back in.

When the Spirit Moves

Attending church has always been important to our families. Being active in a Bible Study or Sunday School class equally as important as attending a worship service. It’s a time of learning, worshiping, sharing, growing, building relationships, etc. The word fellowship is used in the Bible and honestly is one of my favorite parts of being involved in a local congregation. The friendships developed there run deep and offer a support system like none other. Simply put, we need our church family. And family they are – not by our blood but by the blood of Jesus making us brothers and sisters in Christ.

When Jacob was just a toddler we realized he probably wouldn’t be able to participate in a traditional Sunday School class setting for long. He was loud, demanding, wouldn’t follow most directions, would be a distraction, etc. And yet, it didn’t make sense for him to stay in the preschool area. Even if those parents would have been accepting, it wasn’t a good idea for anyone. We knew a change was in order but knew it was going to be terribly hard for us to leave our church family. The church we had grown up in. Where we were baptized. Where we met and married.

It was time, though, for us to consider another church. One that had something specific for those with special needs and different abilities. At the same time, Jacob’s dentist invited us to attend his church because he knew we would be welcomed there. Turns out the church we were considering was the same church his dentist invited us to visit. Afraid of the change, we nervously visited for the first time when Jacob was 4 years old. And, turns out, it was a perfect fit.

In the beginning, Jacob went to the same class as other children his age. The teachers were wonderful, accepting, and loving. I don’t recall at what point but we decided to try out the Special Ministries class that drew us to the church. Jacob was the youngest one in the class but oh how he loved it. They had a record player. Remember those? And Jacob would listen and dance and put the needle back to a certain song to dance and twirl some more. There was a classmate that seemed to think he was in charge of Jacob. It was always funny how he would try to boss Jacob around. (You can imagine how that went over since Jacob rarely followed directions!) It really bothered this young man for Jacob to not let a record play through. Once when he was totally exasperated, he said, “shame come to you Jacob. Shame come to you!” We got the biggest chuckle out of that and repeated it often. Although Jacob wouldn’t be shamed, it was comical to repeat the phrase. It was an incredible setting knowing our son was being taught God’s word and loved on by Godly teachers. Teachers who committed their energy and hearts to providing a safe environment and an amazing class for Jacob and others like him. Teachers who demonstrate the Special and the Ministry aspect of the class.

Through the years this is still Jacob’s Sunday School class. There is no aging out. There are teachers who also remain in that class for YEARS! Just one big happy family. The record player was eventually put away and Jacob started bringing his own cassette recorder to listen to music. Then he graduated to a MP3 player. However, live piano music was always preferred. Jacob had a definite opinion about who should play and it could be an issue if the correct person wasn’t present to play for him. There are funny stories of how he has tried to make certain teachers play. Even if they couldn’t, they’d give it a good effort to prove to him they weren’t capable of much more than chopsticks.

Obviously, Jacob likes hearing the lesson even when he doesn’t appear to be listening but he LOVES the music portion of the class when someone plays the piano and the class sings. The teacher takes requests and everyone has their favorites. Although Jacob cannot verbalize a certain song, they soon realized he definitely has a favorite. Swing Low, Sweet Chariot. It became Jacob’s song and everyone knew it. He would twirl and dance and worship in his own way. And when he was done, he’d enjoy the others, sometimes singing in his own language. Obviously worshiping God through song and dance.

Here is Jacob’s interpretative dance of Swing Low, Sweet Chariot. Watch as toward the end, he goes to sit in his chair. The next song was Stand Up, Stand Up for Jesus. And, Jacob chose to remain in his seat. I suppose he just wasn’t feeling it at that point. I think we should all be more like Jacob and dance before Jesus when the spirit moves.

Jacob is . . .

One reason for starting a blog about our autism journey was for others to get to know Jacob.  Friends and family hear bits and pieces about Jacob but don’t get to spend enough time with him to truly know him well.  Some acquaintances know a little, but not much. Then there are those friends of friends or blog followers who know nothing about Jacob but what they may read here or on Facebook.  Well, he is too cool of a guy for y’all not to know more about this extraordinary fella.

THIS IS WHAT AWESOME LOOKS LIKE!

While I never want to embarrass Jacob (not sure that is possible), I do want to be real. So that includes the good, the bad, and the ugly.  A sweet friend recently reminded me that that is life!  We all have the funny stuff and the hard junk.  So very true.  In today’s post though, I want to strictly focus on the good.  What makes Jacob so amazing?  I look at him and my heart explodes.  I am so very thankful God trusted me with such an incredible son.  One I get to call my own!  Jacob is as special as the day is long and the most awesome guy.  Here are just some of the reasons why:

Jacob is smart.
Jacob is brave.
Jacob is funny.
Jacob is tough.
Jacob is strong.
Jacob is honest.
Jacob is sneaky.
Jacob is sensitive.
Jacob loves lights.
Jacob loves music.
Jacob is observant.
Jacob is tenacious.
Jacob is handsome.
Jacob dances freely.
Jacob is determined.
Jacob is resourceful.
Jacob is a free spirit.
Jacob is uninhibited.
Jacob loves repetition.
Jacob enjoys solitude.
Jacob gives great hugs.
Jacob is one-of-a-kind.
Jacob is curious and nosy.
Jacob has a sharp memory.
Jacob sings in his own way.
Jacob makes joyful sounds.
Jacob likes to hear my voice.
Jacob is a Child of the King.
Jacob kisses me unprompted.
Jacob is not easily influenced.
Jacob has an ear for perfection.
Jacob is good at hiding objects.
Jacob likes for us to sing to him.
Jacob has a child-like innocence.
Jacob doesn’t have a mean bone in his body.
Jacob can stack the most unusual shaped items.
Jacob makes good eye contact to get my attention.
Jacob is great at spinning things, including himself.
Jacob smiles when he wants to, not for a camera shot.

JACOB IS MINE! JACOB IS LOVED!! JACOB IS A GIFT!!!

As a believer, I know with 100% certainty that my sons are a gift from God. A blessing from above. And I am, without a doubt, a better person because of them.

Be My Valentine

From “The Valentine Letter” by Jeff Davidson

“I know how much you long to hear your son speak. I know the depths of your desires to just hear him say, ‘I love you mom’. I know how frustrating it is for both of you.

Well, tonight when he lay in his bed, I heard something you didn’t mom. I heard him go on and on to me in his spirit about how much he loves you, he needs you, and how you are his world.

He and I speak of you all the time. While this world has robbed him of his ability to communicate to you, he speaks clearly through his spirit to me. We share a language not of this world.

In that language known only to us, he tells me of his love for you all the time. His body and mind may be disabled mom, but there are no disabled souls.

You are his valentine every day . . . not just today.

He loves you mom. You give him life. I like to think you got that from me. I know a thing or two about unrequited, sacrificial love, and laying down your life.

And one other thing dear mom. Never forget. Never doubt. Never ever forget or doubt. I love you too my daughter. I chose you. I called you. I created you. My eyes saw your unformed body when I knit you together in your mother’s womb. Your frame was not hidden from me. And you and your child are fearfully and wonderfully made.

I gave you this life because you are strong enough to live this life.

I cherish you. I’ll never leave you. I’ll never forsake you. I will never stop loving you. You are not alone.

Be my valentine.

Your Dad,

God”

I needed this today. Maybe it will touch you, too.

At Your Service

Young families quickly discover the value of having family and trusted friends close by when it comes to caring for their child(ren). Whether it is an initial period to avoid daycare or for occasional date nights, parents need relief and children need to learn to be away from their parents.

We were blessed to live near both of our families when our boys were little. Happy memories were made, for all of us, as they spent time with their Granny & Granddaddy and Mamaw & Papaw. We are so very thankful for those times! And certainly appreciate the invaluable investment of time in their lives.

As Jacob got older, we needed to secure sitters for him whenever we wanted to go out to eat, to a movie, a concert, etc. Hiring a sitter made sense as we didn’t want to burden family. (They NEVER acted like keeping Jacob was a burden but I knew we couldn’t always rely on family.) Also, I didn’t want to take advantage of his brother as a built-in sitter. However, when he was a teenager, he agreed to watch Jacob in exchange for cash (our offer, not his request) so it was a win/win for him and for us. That wasn’t a weekly occurrence but did allow us to participate in a Supper Club with friends. Other family members pitched in from time to time, allowing us simple freedom. We also had dear friends who willingly stayed in our home to give us a break. And then, there were often events that only one of us would attend because we didn’t have anyone to stay with Jacob. Taking him would have caused much distress for him and everyone around us. I hear this very thing over and over again from other parents in similar situations. Having a child with severe disabilities means life-long help and it can be exhausting and over-whelming.

No parent feels comfortable or should even consider leaving their kids with someone they don’t know or haven’t gotten solid references. When Jacob turned 21 we were able to connect with a sitter service. After an initial evaluation/consultation to determine our needs, a sitter, that was employed by the company, was sent to our home to stay with Jacob. Our lives changed dramatically at that point. It was fantastic to be able to line up sitters for us to do whatever we wanted to do. It might be just to go to work and not have to get Jacob dressed and out the door. It might be a date night. It might be a weekend get-away. Through this service, we’ve had some sitters for over 10 years that we trust completely. Sitters that Jacob is happy to see and happy for us to leave! On the other hand, we have had sitters that after one visit, I had to ask for them not to return. That’s okay as it is a process finding a good fit. There have still been times when there isn’t a sitter available. Not a huge deal and we make the best of it.

I cannot leave out one long-term sitter Jacob has had for over 25 years. She is a blessing to us and considers Jacob ‘her boy’. She has spent many weekends with him and helping out more times than I could possibly count. He loves it when she is here because she pretty much waits on him hand and foot. Nothing but room service with a smile for her boy! Practically breakfast in bed! (Against my wishes, but, we need her and I think she needs us.) To have someone in Jacob’s life who ‘gets’ him and loves him deeply, like her own, fosters an eternal, grateful heart.

If you are a family with special needs, I’d encourage you to check into what is available in your area. Using a sitter service means they vet the applicant, do a background check, know their strengths and weaknesses. I totally understand that it is hard to drive away from home leaving your son or daughter with a person that isn’t family. Especially when it involves your vulnerable child. But, do your homework and get started finding someone to provide respite care. It is a lifeline you may not know you need.

Not one of Jacob’s sitters has ever shown up at the door, taken a bow, and said, “at your service”. And yet, the ones that have been in our lives for years now, have that very attitude every time they are in our home. They are ready and willing to help out and literally do whatever it takes. In an emergency, I know I can call on them. Their mission is for Jacob to have a good day and us to have enjoyable time away. They are not family but I count them as such. I consider them a godsend with all sincerity. And I thank the Lord for giving them a heart of service.

Godsend definition, an unexpected thing or event that is particularly welcome and timely, as if sent by God. Urban Dictionary: When a situation is tense and unexpectantly something or someone arrives that completely eases the situation. In other words, a life-saver.

Over the last year alone, Mike and I have been able to enjoy several 4-day vacations because we had sitters we could count on watching our son. That, my friends, is an invaluable gift, a godsend, that I do not take for granted.

Scrawny Surprising Strength

Once a caring friend asked if I was afraid Jacob was going to hurt me. “I am more afraid of accidentally hurting him”, was my answer. Jacob isn’t a big fella, he barely weighs 100 pounds. He has been described as scrawny, thin, and underweight. I am continually thankful to God that he isn’t over 6’ tall like his brother. But, seriously, his strength is deceiving. Just ask the trained dental staff when he goes for a check-up twice a year!! I know the words scrawny and strength don’t seem to go together – actually contradict each other. That’s why I threw the word surprising in there because Jacob’s strength surprises anyone who spends much time around him.

Sometimes I find myself using the term ‘strong-arming’ when I’m describing an interaction with Jacob.

strong-arm (strông′ärm′) Informal adj.
Using physical force or coercion: strong-arm tactics.
tr.v. strong-armed, strong-arm·ing, strong-arms
To use physical force or coercion against.

Whether it is dressing, shaving, brushing his teeth, taking medicine, etc., if the mood strikes him and he decides not to cooperate, he will grab my forearms and lock his. I am left struggling to accomplish the task at hand. I know. I know. It can’t be that hard to break free. It is. It just is. I have had bruises on my arms from the strength in his fingers. Surprising strength.

One particular morning I was in his room to get him ready for the day and sure enough, strong-armed. His television was on and I really don’t know if it was a news feature or a regular show. But, I do know this, it was about a family who had adopted multiple children with special needs. We have adoption in our family so just the word made me pause and pay attention. Add in special needs and I thought, I want to hear more. The story that unfolded was moving beyond belief as THREE of the children had no arms. It was inspiring to see how they had worked so hard to overcome such tremendous hardships. Hardships most of us will never know. I am positive it was no accident that I heard that story that morning. And God spoke to me clearly. I was convicted right then and there to be thankful that Jacob has his arms. And can use them as he desires as some of his peers don’t even have that ability. His strength can be an asset that will come in handy through the years.


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

When someone handles us roughly, our first response is to fight back.
That is what I mean by being fearful of hurting him. Human nature provides an adrenaline rush to defend ourselves. And yet, that rush shouldn’t be necessary for daily self-care. I really want to just diffuse a situation to redirect him and make sure neither of us gets hurt. He uses what he has to communicate and strong-arming is a language we both understand. Got that loud and clear.

Water Woes

One morning a while back, when I went in to wake up Jacob, I found he had been up playing during the night. Video tapes were strewn around the room and his bathroom light was on. Upon entering his room, I thought I heard his sound machine playing a gurgling waterfall sound. Oh NOOOOO – he had both faucets on in the vanity area. Double sinks with the hot water running! And, no doubt they had been running most of the night. Thank goodness neither sink had the stopper engaged or we’d have had other problems for sure.

I headed to Lowe’s looking to purchase something to childproof the faucets. Came home with a gadget that turned out to be pretty worthless. We tried rigging up different things to outsmart him but obviously he is smarter than the average bear parent. We needed a solution to make the faucets hard for him but still accessible for us. I wondered about replacing what we had with motion sensor faucets like a public restroom might have. Seems like that would be super nice! The thought of cutting off water at his vanity was frustrating but obviously we can’t let water run all night.  The ideal world of Jacob turning water on and off appropriately isn’t where we live.

We weren’t really sure why he was turning the water on. Just to hear it? Maybe so. The real thing is better than a sound machine. Note that Jacob doesn’t like to have his hands washed. So don’t assume he was cleaning up during the night. (Actually, he is most opposed to that process and each time I help him in washing his hands, it is a bicep exercise for me just to keep them under the water.) Often, though, there would be a cup nearby. We wondered if perhaps he was trying to get a drink of water. So, it dawned on us to leave a cup of water on his vanity. That doesn’t mean he might not still try to turn the water on, but he has quick access to water if he is thirsty. And, often the cup is empty the next morning. It is pretty much the only time he will drink water willingly so that works great for late night adventures.

As he is prone to do, Mike researched and ordered another gadget to try. I’m happy to report this device has worked well for us. So, if you have had an indoor waterfall problem at home, whether with your challenged kiddo or loved one with dementia, you might want to give this a try. Isn’t it great someone thought to invent the very thing we needed? Yes, indeed!

Disappearing Act

When you have a non verbal child, one great fear is of them being on their own, separated from us, in unfamiliar surroundings and not being able to communicate.  The few times Jacob has left without my knowledge, have seared a fear in me that I haven’t forgotten.  And, I still shudder at the ‘what-ifs’.   

The first time he walked out of our home alone he was 8 years old.  He decided to head down the street.  I suppose just to enjoy the neighborhood scenery.  We quickly found him not far away and knew immediately that installing keyed dead bolts that he could not open, would be necessary.

The second scare came when we were on vacation with family.  Jacob was 10.  Part of our group had gone downstairs, some to the pool and others headed to the beach.  My sister-in-law and I remained in the condo with Jacob to join them later.  As I walked out of the bedroom, I saw the condo door wide open and ran to look down the hall.  Both ways – Jacob was not in sight. He had disappeared and a pool was nearby. Panic set in!  Hurrying down the stairs, calling his name afraid of what I might or might not find.  Got to the pool and there was Jacob standing beside it just watching everyone play. 

By then, we realized the importance of identification on Jacob and ordered a ID bracelet for him with our contact info.  He wore it for years but when it got to where he could undo the clasp, and had outgrown the size, I’m ashamed to say we became lax.  Those two scares had made us diligent to have doors locked that he couldn’t open.  Plus we always communicated in the school/day services setting that he might leave a building if left unattended.  He wasn’t what some would call a ‘runner’ – dashing out every time he saw an open door.   The times he ventured out alone seemed to be curiosity driven.

The third scare came years later.  It was 2010 and we were in Alabama babysitting our young granddaughter (and 2 grand dogs).  I placed a phone call to a friend, who was dog sitting for us in our home, speaking to her for several minutes.  When I returned to the living area, the front door was ajar.  Jacob and both pugs were no where to be seen.  It was late enough in the evening that the sun had set.  So we had darkness going against us.
Even though our granddaughter was sound asleep in her crib, I didn’t feel like we could both venture far at all. Imagine the  distress!  And ALL of the things running through my mind.  Every scenario was bleak. Even if Jacob could hear us calling his name, he couldn’t respond.  Would an understanding soul find him and realize he needed help?  What if one of the dogs got hit by a car.  How would I explain that?  He appeared to be a functioning (maybe a tad tipsy) adult, would he be ignored to wonder alone into the main road or the lake?  Would Jacob just open a door and walk into another home?  If so, would he be harmed because home owners thought he was dangerous?  Which way did he go?  Walk along the street either direction?  Cut through yards between homes?  We were in a neighborhood we had only been in a few times and certainly didn’t know a single neighbor.  I did not have a picture of Jacob with me to even show someone my missing child.  Imagine the terror.  Imagine the panic. Imagine the adrenaline rush.

Thankfully, this post has a happy ending!  YAY!!   The dogs were together exploring very close to their home and were easy to corral.  Mike found Jacob two houses down on the front porch of an occupied home.  All the homes on the streets were off the ground with many steps leading up to the front door.  So there was not a lot to see street level, except stairs and shrubbery, making it harder to look quickly.  Jacob had carefully gone down the stairs to leave the house and up the stairs a few doors down just looking around.  It felt like hours but truthfully it was only a few minutes. 

Jacob wears a Medic Alert bracelet at all times.

Believe me, that night the ‘what-ifs’ were terrifying.  I could not sleep. I was so afraid that Jacob’s escapade excited him enough that he might try for another adventure.  As soon as we got home, a new Medic Alert bracelet was ordered and he’s worn one ever since.  I also printed flyers for our street and distributed to each home.  They included a photo of Jacob, an explanation of his behavior, and our contact info.  Now, I also keep a flyer in my car if the need ever arises. 

This is the top half of flyer that neighbors are given. Bottom half has contact info including our home and email addresses, phone numbers, and Jacob’s physician.

Time after time I’ve been keenly aware of God’s protection over Jacob.  My heart overflows with gratitude that the Lord of all the universe puts angels around us.  Just think – we are in the presence of angels and they are here for our good! Thank you Lord!