One of THE most frustrating elements of having a child with no verbal language is the guessing game. When you cannot figure out what they want, what they need, how they feel, where they hurt, it can become terribly overwhelming. After this many years, I can often ‘read’ Jacob and then there are obvious signs that go along with a headache, bad sore throat, etc.

But, there are also those times when something will happen and I have absolutely no way to figure out how or what. He’ll get an awful scrape on his arm. Was he trying to reach for something behind his dresser? Did he fall? Or a nasty bruise will show up. We can all have a bruise appear and can’t figure out what caused it. My instinct just doesn’t want him to be hurt or have had awful pain. I feel like the answer to most of my questions is, ‘I don’t know and don’t even have a clue.’ Oh, how I wish I did. I can only guess.

Recently Mike went in to check on Jacob early one morning as he does every morning between 5 and 6. He discovered Jacob had been sick during the night. My heart sank. I felt so sorry for him. Parents, you know that feeling of walking in to realize your child (often still in a crib) had been sick during the night. Talk about an awful feeling. I felt so very sorry for him. When your child is sick, so are you. That’s just the way it is.

The afternoon before when I arrived at his day program, a staff member walked out and said, “Jacob, was feisty today.” Interesting word and not often used to describe my boy. When we got home, he didn’t want a snack. Then he wouldn’t eat anything for supper. Both of those aren’t completely unheard of with Jacob. Unusual but doesn’t make me think, ‘oh no, he is sick.’

But, bless his heart, he was indeed sick. He apparently had a stomach virus that was really hard on him. Therefore, hard on us. I convinced Mike to go on to work. “We’ll be fine,” I said. And at the same time saying to Jacob, “it’s going to be okay.” Turns out, we weren’t at all okay and within a couple of hours, I called Mike to come home. That’s how rough it was. Without going into the messy details, suffice it to say, the washing machine ran non-stop that day (and the next). And, there was a lot of cleaning going on of everything and person in sight! Everything.

Feeling crummy meant it was hard to get him to drink much. I didn’t give up for fear of dehydration and thankfully, was able to get him to drink enough water and diluted juice (he will not drink soft drinks) to ease my mind at least a little. Was he going to be sick again? Oh, the guessing game. He was pretty quiet all day, watching some TV and listening to music. There is a saying – Give a sick man medicine. Give a sad man, music. Seemed the virus had to run its course but I think the music helped his feelings.

That day if I said “bless his heart” and “I feel so sorry for him” and “it’s going to be okay” once, I said it a dozen times. I just cannot stand for him to be sick. Fortunately as the day went on, I could see him perk up. He decided he would eat a little and moved around the house more. Good sign.

Knowing he had not slept good the night before and he hadn’t slept during the day, I wanted to get him to bed at a decent time. It was a pretty exhausting day and felt we all needed an early bedtime. Around nine, I started to his room and told him it was time to get ready for bed. What happened next, was fantastic and quite comical.

As I approached Jacob, he pushed me, using both hands, back into our den. He showed me the recliner and made me sit in it. He handed me a blanket (to get comfortable and cozy). He pulled the lever on the recliner to make sure I was nice and relaxed with my feet propped up. Once he was satisfied that he had thwarted the bedtime mission, he went back to his room, closing the hall door behind him. NO KIDDING! I laughed out loud. Little rascal was definitely feeling better. Thinking that was such a clear signal, I had to grant him an extended play time, so Mike and I sat in the den talking. A few minutes passed and Jacob eased the hall door open and ever so slowly peeked in to see what we were doing. Then he hurriedly closed it and went back to his room.

Bless his heart. Obviously, he was NOT ready to go to bed and wanted me to chill out while he played a while longer. I didn’t have to wonder and figure that one out. The day ended without another round of the guessing game. And Jacob had put a smile on my concerned face and sick heart.

Mother’s Day is coming up soon so I volunteered to write something about Jacob for this blog. I’m better at writing short smart aleck comments on Facebook, but I will give this a try.

Jacob loves both Terri and me, but I suspect he favors her a bit more (okay, a lot more). Why? Cause she’s the ‘Go-To Gal’. He knows she will take care of his needs. She has always been the one to keep thinking what we can do to make Jacob’s life just a little better. If there was some treatment that she read might help, she would push for us to try it. If the school or the day program needed to tighten up, she would (or sometimes have me) let them know it. She’s the glue that holds our family together when it comes to Jacob and I am thankful for her. It’s been a journey that I wish we didn’t have to make. But Jacob, I’m sure, is glad that he has had his mom to be his ‘Go-To Gal’ to take care of him.

My gift to Terri in the last year, to give her a break from Jacob (and me), is planning guy trips for us to visit different State parks in Mississippi. I reserve a cabin for a weeknight, since it does not require a two night stay like on the weekend. We load up with all the necessary junk food needed to survive for a day and drive to the park (which is probably Jacob’s favorite part of our adventure).

Once we arrive, Jacob will usually grab the bed he wants and have me turn on the TV. He’ll start playing with his toys and watching TV, if there is something on that strikes his fancy. I think he just likes the idea of being in a different room than his bedroom.

I will usually go outside and just stare at the park lake until the sun goes down. Sometimes he will come outside and get me to walk around the cabin and then head to the car. Yep! He may decide before we have spent the night that he is ready to go home to his room, his bed. I have to explain that we are staying for the night. He usually accepts this and heads back into the cabin to resume playing.

When bedtime comes, we each have our own double bed. For some reason, he prefers for me not to sleep in the same room with him. Maybe, he believes Terri’s accusations of me snoring are true. (I don’t snore but in honor of Mother’s Day, I’ll let Terri think she knows what she’s talking about.) Either way, he will get in my bed and politely try to pull me out of the bed and into another room. In many cabins, the only other room is the kitchen which I prefer not to sleep in. I have to convince him that I am not going anywhere and he FINALLY accepts the fact that I am not leaving.

All in all, I think and I hope that he enjoys our outings. From what the Go-To Gal says, it has been a gift of needed respite for her. And I know I enjoy it because we’re getting to do something together as a Father and his son.

Thanks for letting me share a little bit about my life with Jacob. I look forward to Terri resuming the Blog posts!

We all have situations or circumstances where something happens and emotions buried deep come bubbling to the surface. That often happens when we are going about our business and something or some one will remind us of a loved one or a friend who has died. Or perhaps a traumatic event we’ve tried to forget. Before you know it, we’ll go back to feelings of pain and sadness that seem to have come out of nowhere.

When I was pregnant with Jacob, another couple that were close friends of ours were also expecting their first child. Our due dates were close and it was nice sharing pregnancy stories with each other. Jacob was born the 9th and our friend’s daughter was born seven days later on the 16th. We lived in the same neighborhood and were members of the same church. We hung out a lot together. I considered her Jacob’s first friend. They were side-by-side buddies in their strollers whether we were window shopping at the mall or navigating an outdoor flea market. Good times and great memories.

With Jacob being my first born and not having much contact or experience with babies and toddlers, I have to admit there was some comparing of developmental milestones on my part. But not much. I accepted the age-old explanation of girls just develop faster than boys. As time passed, we left the neighborhood and that church. Mike and I searched out a church to meet our needs. The friendship remained but the contact lessened. Several years passed, and then, to our surprise and delight, they started attending our church and got involved. By then Jacob was going to the Special Ministries class so he wasn’t in groups with his first friend. But us parents picked up right where we left off and were able to enjoy our families seeing each other more once again.

Through the years I watched as kids Jacob’s age participated in everything from academics to sports and to Bible Drill. And although there was a twinge of sadness that he wasn’t able to do those things, I could genuinely celebrate accomplishments of others his age. Until one year. It was 1997 and he would have been graduating from high school. His first friend, born a week after him, would be graduating.

Our church does this really great thing called Senior Recognition Sunday and that includes a Hall of Memories for graduating seniors. The students are celebrated with a meal, an opportunity to set up a booth with their memorabilia, a worship service where they are applauded and challenged. The church bulletin has pictures of the graduating class from that year. It is a well deserved, great day.

On a May Sunday in 1997, we sat down in the Sanctuary where we always sat. I knew it was Senior Recognition Sunday. I knew if things had been different, Jacob would have been ‘one of them’. As the service started and the seniors started processing down the aisle and to their designated seats, I was hit hard. HARD. It felt like a semi-truck of emotions barreled over me. OUT OF NOWHERE. Tears started pouring down my face. I leaned over and told Mike that I needed to leave. He motioned for Josh to come and picked up Jacob from his class. I was sobbing by the time we got to the car. They were bewildered. I couldn’t even get out why I was crying. We were part of the way home before I could speak, “It made me so sad when I saw Amy walking in.” “Jacob should have been part of that group.” That day I cried a lot. If I had any idea I was going to be so overcome with emotion, we probably would have stayed home that day. But I didn’t. Out of nowhere.

Milestones that won’t be reached can stir up such sad emotions. That is normal and that is okay. I had a pretty hard time when that same young lady was about to get married years later. Thankfully when feelings come out of nowhere, God is there and understands. He wipes my tears and mends my heart.

Thankfully, seat belt use became accepted, if you will, when our boys were young. It wasn’t law yet but would become law soon. My generation didn’t grow up using them but I found it extremely comforting once we were on board. I remember if we dared to start backing out of the driveway before our younger son was buckled up, he would literally panic. It was a good habit to form from an early age.

Buckle up for safety, buckle up. Buckle up for safety always buckle up. Pull your seat belt snug, give an extra tug. Buckle up for safety, buckle up. Buckle up for safety, always buckle up. Show the world you care by the belt you wear. Buckle up for safety, EVERYBODY, buckle UP!

Beginning with car seats and progressing out of them as he got older, Jacob has always been buckled up. It wasn’t as if he was ever allowed to climb freely about the seats in the car. Yes, from day one, he was secured in a seat belt. *Until he decided it wasn’t necessary. He doesn’t have the fine motor skills to actually insert the buckle to make it click. But he can unbuckle. Sorta like he can’t really dress himself but he can undress. It goes without saying, for his safety, that of our family, and those in vehicles around us, wearing a seat belt is non-negotiable. Without fail, we buckle Jacob in as we get into the car. And, I often find myself singing the last line of the above jingle as I’m doing it.

*Until he decided it wasn’t necessary. REALLY? Of course, it is necessary. However, at some point years ago, Jacob realized he could unbuckle his seat belt. Probably most of you with children have had a time when one would discover they could do the same. And that was great if you had safely arrived at your destination and were ready to exit the vehicle. But, not okay if you were traveling.

We found ourselves needing something to keep Jacob’s seat belt secure while in a moving vehicle. At first, Mike rigged a small container that would snap over the buckled belt latch with Velcro. It worked pretty well. But wasn’t universal to different vehicles. We then ordered a device manufactured for seat belts. Again, it worked on some but not all depending on the style of the latch. A few years ago, we tried a different style and it has worked great 99% of the time.

What about the other 1%? Depending on Jacob’s mood, he has been known to shimmy under a latched belt to free himself of its confines. YES. HE. HAS. This has only happened when he is highly upset or agitated. He will slide down to where the belt moves from across his lap, further up his torso and chest, to his armpits, shoulders, and then over his head. It seems like he is going to get stuck around the armpit area or even strangle but somehow he manages. Hopefully, I catch on to what is happening by a glance in the rear-facing mirror. But he can also do it in record time. What comes next is scary. He will literally lunge toward whoever is driving and grab them. It is dangerous, to say the least. Remember he is already in an agitated state. Whether it is both of us or just me when this starts – quickly pull over and get him back in the seat (after an intense struggle). Then get home as quickly as possible.

If Jacob is happy and cooperative as we get in the vehicle, I’ll often choose to not use the seat belt safety lock. I like for him to be able to undo the latch when we arrive at our destination and leaving the lock off, allows him some control and freedom. When in use, it requires a straight edge (like a key or craft stick) to release the latch. Not hard but does take an extra step. Funny thing is, sometimes even when it seems all is right in his world, he will get in and then reach for the lock wanting me to put it on his belt. I don’t know if he is thinking, “I’m in a good mood but that could change so I better be locked in.” Or, “sometimes I do something I regret and having the safety lock may prevent that.” Maybe, “I don’t trust myself to behave today.” Whatever he is thinking, I’m definitely going to grant that request.

Whether a really short distance or a trip that takes hours, Jacob usually enjoys going for a ride. So, that’s an activity we can do to give him pleasure and expand his world. A safety lock helps us to be able to continue those outings. I’m so thankful for those things, no matter how small, that make our lives easier and provide an extra measure of security.

BUCKLE UP FOR SAFETY, EVERYBODY, BUCKLE UP!

Over a decade ago, the Youth Minister at our church rallied a team to host a Joy Prom. A prom for the special needs community. An opportunity for them to not only feel special, but to get dressed up, pampered like royalty, and dance the night away. All in a safe environment where they wouldn’t feel different but accepted whether they were in a wheelchair, used braces, or had their own one-of-a-kind rhythm. We took Jacob the first couple of years. He was able to spin, twirl, and dance to the music with people nearby but still giving him space. As great events do, the crowd grew and quickly it went from a few dozen attendees to around 500. Isn’t that amazing? I love how students, their parents, teachers, and more all come together to make it such a wonderful night. They think of everything with careful attention to detail and the honorees love every minute. It brings them so much JOY!

Fast forward to this year, the theme was Glow the Night Away and Joy Prom was in its 12th year. We decided to give it a go and take Jacob. Late that afternoon, I went back to his room and told him we were going dancing. He jumped up and wanted to hear more. I showed him some clothes I thought he could wear. (Some of the guys wear suits or even a tux. However, that is not Jacob’s style.) He could not have been more cooperative as I got him dressed and his hair combed. He was obviously excited. And was lookin’ gooooood! Then, while I got ready, he sat in our bedroom waiting patiently to go dancing. He was happy. I was happy. We were all happy.

When we got to the church, he hopped out of the van and took Mike’s hand, ready to go dancing. As we approached the check-in location, we could see the line was long. And getting longer by the minute as vans and buses dropped off attendees. We had intentionally arrived a little late hoping to avoid a long wait. Because it is next to impossible to stand in a slow-moving line with Jacob, Mike walked around outside trying to keep him occupied until we could get in. We left his wheelchair at home thinking he would want to be able to twirl and dance. Lesson learned, we can only wait in a line if he is secured in his chair. One attentive volunteer realized that we couldn’t keep Jacob in the registration line and asked how she could help. I didn’t have an answer but appreciated the offer! I slipped in another door and asked about bypassing the check-in and photo booth set-up altogether. Originally I had hoped (unrealistically) to get a picture of Jacob at the really cute photo booth. However, I wanted more for Jacob to get into the dance area and hear the music.

After waiting a few more minutes, a dear friend came out and motioned for us to come in. We were handed fun glow-in-the-dark bracelet/necklaces but Jacob wasn’t interested in sporting any accessories. The large room was PACKED! There were tables with chairs on either side and the middle section was shoulder to shoulder people dancing their hearts out. It was dimly lit (making the glow stuff look really cool), the music was loud, and there were probably 500 people in the event room. Unfortunately, Jacob was interested in only one thing, getting out as fast as he could. I quickly tried to take his hands and dance. Not having it. We managed to get from one door to another across the room in probably a minute and he was done. He was frustrated and showed it. The only thing we could do was make our way out and leave.

On the way home, we stopped and got him one of his favorites – fast food hamburgers. I wondered if he was disappointed in the evening. He had been so excited about dancing and so cooperative until we actually got there. He really had no idea of what to expect and wasn’t prepared for the crowd. I know I was disappointed. Probably way more than him. I love, love, love, that our church (and other organizations) host a prom for those that can’t or weren’t able to attend one in high school. I see what a big deal it is for so many. They get dressed UP! Hair done, manicures, the works. It makes my heart so happy. I so wanted Jacob to have that experience and was really bummed that we didn’t last five minutes at the Joy Prom.

Autism steals so much when it comes to socialization. It is flat out hard for Jacob to be around a lot of people. When our home is full of guests, he can retreat to his bedroom. When he is in his day program, he can get away from the group and hang out in his own space. I was sad and felt a pity party coming on. And then, as Mike always does, he helped me change my perspective to look at it another way. He commented that he had felt like Jacob because the crowd was even too much for him. Thankfully Mike didn’t yank a guys glow-in-the-dark necklace off, like Jacob did! He noted that an introverted person would not have enjoyed being tossed into that atmosphere. And he was right. I hadn’t thought of Jacob as introverted but everything points to that. Autistic or not, he is withdrawn and sometimes a room full of people just becomes overwhelming and draining. Mike said, “it’s okay that he wasn’t surrounded by a bunch of friends, he has us.” That is all I needed to hear. He.Has.Us. We can have our own dance party.

Was going to the Joy Prom a waste of our time? No. 1) Showing up was one way of saying thank you to the hundreds of volunteers that give their time to set up, decorate, direct traffic, provide food, chaperone, work, work, and work some more. 2) A number of our friends that never get to see Jacob, got to speak to him. I loved that and so did they. 3) A teacher Jacob had in elementary school, who hadn’t seen him in 30 years, got to talk to him. 4) I enjoying seeing several of the guys and gals, who are Jacob’s peers, all ‘gussied’ up. And, 5) Jacob looked so handsome and exhibited more patience that usual. He tried, so did we, and I’m glad we did.

At home that night, Jacob asked for an ice cream sandwich on his Go Talk. I was so proud of him because the easier thing for him is to open the freezer and point to one. That alone was cause for a celebration. So, I got one of him and one for me and we sat together having a great time. It’s funny how ice cream makes everything better.

About four years ago, two girls were adopted into our family, bringing our grandchildren number to three. They don’t live as close as I’d like but we see them as often as possible. And, we take every opportunity to have them in our home for however long their parents are willing to let them be away! Over spring break, two grands came to stay for several days. When they are here, it is safe to say, I cannot help but be on edge because of Jacob’s unpredictable behavior. They are really great with him but he isn’t always happy for the intrusion in his life. One morning he was up at 7 AM and ready to head out the door. Mike joked that he was in a hurry to get away from all the girls.

When grandchildren are in town, we are busy with nonstop activities. Making a point of cramming in as much fun as possible in the time we have. I have such fond memories of time with my grandparents that I want them to remember our times together as well. For most outings, Jacob is either at his day program (happy to have his own space) or he is home with a sitter. This visit, though, we chose to take the girls AND Jacob to a Disney on Ice show. We decided to go in two vehicles. Not knowing if Jacob might have a meltdown, I could remain with the girls and Mike could leave with Jacob, if necessary. Plus, Jacob does not like anyone riding near him in the van. He is comfortable with his chauffeur/driver and a co-pilot, but no one else.

On the way to the coliseum I talked to the girls about what we might expect out of Jacob. Remember, he is unpredictable. He might squeal. He might grab a person’s arm, hair, clothing, glasses, and/or jewelry if they are all up in his space. He might self-stem twirling his hand and fingers. He would ride and remain in his wheelchair (because we learned a long time ago that he is most comfortable in a large crowd if secured in a chair). He’d take the elevator and we’d probably take the stairs. I was just trying to prepare them so they’d not be caught off guard as they’ve rarely seen Jacob outside of home.

We got to the venue with plenty of time to spare, found our seats, and hit the concession stand. Early during the show, one grand leaned over and whispered, “Nannie,” she had my attention and continued, “I would be proud to call Jacob my son.” Just like that. Struck to the core. This young, teenage girl. Wise beyond her years. Where did that come from? Most everything embarrasses a teenager. But, obviously hanging around Jacob didn’t bother her at all. My granddaughter said what may be the sweetest thing anyone has ever said to me. It wasn’t like she was trying to give me a pep talk perhaps sensing I was frustrated. I wasn’t. We were having a wonderful time. It was totally unprompted and I was the one caught off guard. The only conclusion, that made any sense to me, was that she was seeing Jacob as a really cool dude. One she loved because he is her dad’s brother. And realizing she could be happy having a son like him one day. My heart exploded. Thank you Lord for bringing this jewel into our family. Her eyes saw Jacob with such acceptance. Before she knew her Uncle Jacob, God was preparing her to be gentle and sensitive to him. I hope we’ll make many, many more wonderful memories. I believe we will. But, I don’t know any can match her loving comment.

That night Mike sat with Jacob in a special needs section and we sat a couple of rows back. We could watch the show and see them clearly. It was such a great outing. The girls got to witness Jacob really having fun. He loved every part – the lights, the music, the skaters, the snow flurries. Smiling and enthralled. Enjoying the exact same thing they were enjoying. Aware that in some ways, he is much like them. I’d say Disney on Ice was a win for all of us!

I am proud to call Jacob my son. It seems, a certain teenager is proud to call him her uncle. And, I am certainly proud to call her my granddaughter.

April 2, 2019 was Autism Awareness Day. The blog below was posted on Facebook two years ago. It was a hard post to share then but did so feeling like others need to know the bad that comes along with the good. To give understanding the next time you may be a witness to such odd, erratic behavior. Autism is a roller coaster ride. This year the day was uneventful. YAY! Those are my favorite. I did wear blue in honor of my boy, he happily attended his day program and I went to work.

The clip art below is a pretty good summary of a description of autism. I do like the logos and clip art that feature colorful puzzle pieces. The word autism and puzzle go hand in hand. For those on Facebook, this is a repeat but perhaps you can pass this along to someone you know who is living this story. For those not on FB, here is my autism awareness post.

Sunday, April 2, 2017: This morning, Jacob was quite cooperative getting ready to go to church. But once we were in the garage, he didn’t want to get in the van. He went from side to side examining the garbage can, contents of the recycle bin, and anything else of interest. At one point Mike thought Jacob had gotten in and raised the garage door. Quickly he realized Jacob wasn’t in the van but was going to run out of the garage so he reversed the door and grabbed Jacob as he was dashing under the door. This act, sent Jacob spiraling. He tried hard to keep from getting in the van and he didn’t want to wear a seat belt. His cooperative mood quickly disintegrated and became volatile in seconds.

It was a struggle to get him in the church. Finally we got him to his Sunday School classroom but he didn’t want other people in it. He ran across to another room and just sat down on the floor. It took three of us to get him up. I felt eyes boring into me. What was wrong with our son? Why was he crawling on the floor? Once we got him back in his room he started grabbing people. Why was he grabbing people? We had to leave. Even walking down the sidewalk he was fighting us. Autism. Today I hate it. I really truly do. Don’t get me wrong. Those around us were kind. How can I help? One staff member walked all the way to the van with us. Is there anything I can do?

It is just hard. I needed a big sign—THIS. THIS IS AUTISM.

Autism is called an invisible disability. At a glance an outsider will not know something is wrong but upon observation will quickly jump to the conclusion that something isn’t right and judge accordingly. Sometimes I jump to my own conclusions and let those unspoken words sting. However, please understand that we have soooooo many amazing moments. It just so happened that Sunday morning was not one of them.

Jacob couldn’t deal with it today nor could we. The best thing for all of us was to escape to the comfort and security of home and that is just what we did. The day got 100% better once he was in his room surrounded by the things that make him happy. God calmed Jacob quickly and he enjoyed watching the Weather Channel and listening to his music all afternoon. Oh that it was always that easy.

When the day was over we could say it was a good day.

This is the day the Lord has made, let us rejoice and be glad in it. Psalm 118:24

That is my favorite verse. Thankful that no matter what, His mercies are new every morning. And here two years later, Jacob had a good day from start to finish. I can certainly rejoice in that!

This poem was shared with me many years after Jacob’s diagnosis. From time to time I think about it and how wonderful it captures the feelings of my naive first-time mother frame of mind. Life rarely turns out like we pictured. Right? Right! There are no guarantees. But I do believe that changing our mindset can have a powerful impact. We all have a choice, whether we choose to take the road to negativity or determine to strive for the power of positive thinking. While I’m not always successful, it is my goal to choose the latter.

WELCOME TO HOLLAND

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Frankly, there was a time when I mourned that my life, my family, hadn’t turned out at all like I imagined it would. And part of that grieving was wishing all families had a child with a disability. It is embarrassing to admit that I let my mind go there. Maybe that was part of the bargaining or anger stage of grief. How awful to think I would ever want another family to experience pain. It shows that I felt so terribly isolated and thought if we were all in the same boat, there would be more understanding. Slowly and thankfully, as I focused on the blessings, the beautiful things, my mourning turned to gladness realizing God did not make a mistake.

I’ve never been to Italy or Holland and probably never will. But this I know, God meant for me to be right here, right where I am, right now, all along. Even if it is a different place. Because when He sets the detour sign, embracing it makes the trip worthwhile.

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.

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!

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.

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?