Ice Cream is Good Medicine

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.

I Would be Proud

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.

Autism Awareness

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!

No Guarantees

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.

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.