When the Spirit Moves

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

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

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

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

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

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

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

Jacob is . . .

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

THIS IS WHAT AWESOME LOOKS LIKE!

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

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

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

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

Be My Valentine

From “The Valentine Letter” by Jeff Davidson

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

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

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

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

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

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

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

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

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

Be my valentine.

Your Dad,

God”

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

At Your Service

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

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

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

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

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

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

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

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

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