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!

Sentenced to the Dentist!

If you don’t have disability in your family, you may have never thought of the potential challenge for both the disabled and those serving them for a routine check-up. Hopefully this post will give some insight and help others along the way.

Jacob has been to the same dentist office since he was 3 years old. It feels odd to walk into a Pediatric Dental Clinic with your grown son. However, it’s what we’ve done because they’ve lovingly met our needs all these years. Truly a tremendous blessing to have dentists, hygienists, assistants, and office staff who are trained in serving those with special needs. If you know someone who fits this job description, tell them THANK YOU!

I wish I could say Jacob has grown accustomed to the routine and it isn’t a problem. That would be false. He hates it. I suppose no one loves having their teeth cleaned but most can appreciate the benefits and wonderful feeling when it’s done. It is a real aversion for him. I start dreading these appointments a couple of days before. *He doesn’t know until an hour or so before getting in the car. Why the dread? I’m glad you asked!

  • UUIt is hard on Jacob. He tosses and jerks as much as he can. It’s a natural reaction to not wanting to be there and have someone’s hands in his mouth. He’s bound to be tired and sore from the self-imposed workout!
  • It is physically hard on us. Sometimes we work up a sweat just getting him out of the car upon arrival. Once inside, it is not like we are in the waiting room and Jacob goes back. We have always gone back with him for check-ups and any dental work. In the early years, his dentist would joke that I could probably give injections as I had watched so many.
  • Once Jacob was taller and stronger, we agreed for him to be wrapped in a papoose. It immobilizes him so he calms down. I sincerely wish it wasn’t necessary but I don’t believe we could accomplish anything without it. Leaving his arms free is dangerous for him, for us, the hygienist, and the dentist as sharp instruments are involved! At his most recent appointment he sat on the floor when we got into the room. Mike and I lifted him up and he grabbed a bench almost turning it over. It literally took five adults to get him to lie on his back in order to be wrapped. Within seconds of securing the wrap, he was able to relax. Some. Not to say that he was happy, it just made for easier cleaning even though he might still jerk his head and clamp his mouth shut. As mentioned before, we are there with him the whole time helping to keep him still and often singing to distract him.
  • When Jacob is doing everything he can to keep from cooperating, I am concerned his behavior may scare other patients there. I don’t want their check-up to be traumatized by him fussing and flailing around the room.
  • It is emotionally hard on me. I’m quite certain this is strictly a mom thing but I always leave his appointments physically spent and emotionally drained. Even if it is a ‘no cavities’ visit. Because Jacob cannot brush his teeth, all of his life one or both of us have taken care of his dental hygiene. And he basically resist us, making it his mission to be difficult 90% of the time. Even if I think I’ve done as good as I possibly can brushing his teeth, I always feel it isn’t good enough. If his gums bleed, if he has a cavity, or if I see plaque, then it is my fault. I don’t dwell on this thinking but it is very real every six months, no matter.
  • Because his communication skills aren’t good, I must pay close attention to dental health. If he has a toothache, it may be really hard to figure out. I may think he has a sore throat and instead it could be a toothache or vice versa. It’s important to watch for signs that his mouth is bothering him. And since he doesn’t willingly just let you take a look, it is tricky to find answers.
  • We have to use medicine prior to an appointment to help with his gag reflex and hopefully help him chill a little. It’s a balance finding the right dose so he can relax but not so much that he is dizzy afterwards.
Mike singing to Jacob.

*Back to Jacob doesn’t know where he is going until about an hour before. On the afternoon of his last visit, within a few minutes of knowing he was going to dentist, I caught him hiding my car keys. I quickly retrieved them and returned them to my purse and zipped it closed as he typically has trouble with zippers. I did a few other things to get ready to go including getting him in the van. Went back inside to grab my purse and it wasn’t on the bar where I left it. Did a quick search but knew exactly what had happened. Jacob ‘hid’ my purse trying to stall our departure. Much to his dismay, it did not work!  I didn’t need my purse since Mike was driving. When we got home, my purse was on the sofa in the den and easy to spot, I just hadn’t taken time to look there before leaving.

After the visit, all was forgotten as Jacob was treated to his favorite burgers to enjoy once we got home. He had chocolate milk and Disney Hakuna Matata close by. Plus a note from his Granny. His teeth were clean and we were happy it would be six months before a repeat.

Dental visits are something I wish we could put off. But, that isn’t an option. We truly adore our dentist. Her dad was Jacob’s first dentist and while Jacob has never loved going, he has always known he was loved while he was there. When she took over the practice, it was a smooth transition with the same atmosphere we’ve appreciated all these years. It’s not the dentist, it’s the sentence of having to go at all!

You Can’t Hurry Love. Or Jacob.

This goes hand in hand with the Stalling is His Calling post. Some people like to be on time. Some don’t mind being late. But, if you are reading this, you have an awareness of what it means to be early, on time, or tardy. Jacob has indicated he has a sense of time. But that doesn’t mean he cares about being ON time. It’s safe to say he is quite apathetic when it comes to a schedule. This creates a conflict for me as I’m one who likes to be on time. I have not found one thing, NOTHING, that will make him hurry. No bribe. No song. No promise. No chocolate. “Speed it UP!” If he is rushed, he can make everyone miserable. I’ve learned that it may take an hour, or more, to get him up, dressed, fed, etc. before leaving home. So, I allow that time. Some days that is more than enough and some days not nearly.

I have to remind myself that all things happen in God’s time. A delay I wasn’t pleased about may have been just the thing that kept us safe that day. Often I’m guilty of being in a hurry rather than ‘stopping to smell the roses’. Jacob gives me ample opportunities to practice patience. And, I’m not sure but is there such a thing as too much patience?

No you can’t hurry him. No, you just have to wait. He won’t make it easy, it’s a game of give and take. You can’t hurry him, you’ll just have to WAIT!  Just trust in God’s time, no matter how long it takes!