A long time ago someone suggested a communication device for Jacob, called Go Talk. It was a simple tool, easy to carry around, had limited space but was a good start.
He used it a little but not a lot. I didn’t try to go back to find our pages of photos that went in the 9 squares.
Fast forward to late 2017, we heard of an updated version called Go Talk Now. It was software to be used on a device and offered almost endless possibilities. We decided to give it a try and set up the Home Page on an iPad dedicated to his use.
Jacob was very curious about it. Mainly because he could push a button and get a response. We customized it to suit his needs. (It also has a keyboard that could be added if he were interested in spelling out words.) For now, these are some of the pages on it. When he presses Can I have something to drink? on the Home Page, it goes to this screen.
Each button has a male voice saying either the words on that button or the name of the item.
So when he presses I’m hungry, it goes to this screen with four options:
And here is the Breakfast page, each one talks to him when he presses a button.
Each button pressed, either takes him to another screen, or responds with the appropriate command.
‘I feel’ gives him these options:
Has he used the program appropriately? YES!! Does he use it daily for communication? No. Sometimes, he brings it to us and sometimes, he puts it away:
Yes, in the pantry where he has also stashed his tennis shoes.
These are some of the other pages:
Does it bring him a great amount of pleasure? YES, indeed!
He will go to one of his favorite ‘pages’ and pick something to listen to while he’s eating. Such as Down on the Corner located on the Dance Songs page.
Shortly after we started using one at home, his Day Program purchased one for his use there. Again, not used all the time but is available for teaching and fun when he wants.
This is a really great one. The Friends button has photos of sitters and friends from church. He doesn’t get to see them often, but he can tap on their photo.
One of his favorites is the Family button on the Jacob’s Favorites page. Unfortunately, I haven’t taken advantage each time family members were in our home to have everyone on it, but there are some. It has a voice over, saying their names when he pushes their picture. Some then recorded something special for him—such as one of our granddaughters, simply said, “we love you Jacob!”
But the one he likes the most is what he hears when he presses this button:
Before it finishes saying Granny and Granddaddy, he pushes it a second time to hear Granny singing:
He thinks it’s the best song ever. I think he is right.
As you can see, Go Talk Now is a wonderful tool for him and a blessing that he enjoys it so very much.
On February 18, 1978, my dad walked me down the aisle and gave me away. To the fella that just a few years before, he had determined was too old for me. I couldn’t dig up the cassette recording (yes, it was that long ago) of our wedding ceremony. But, our vows, went something like this:
Minister: “Do you, Mike, take Terri, to be your lawfully wedded wife, to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward as long as you both shall live?” Mike: “I do.” Minister: “Do you, Terri, take Mike, to be your lawfully wedded husband, to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward as long as you both shall live?” Terri: “I do.” Then, we each repeated the ring portion: “With this ring, I thee wed, and all my worldly goods I thee endow. In sickness and in health, in poverty or in wealth, ’til death do us part.”
Having worked with over 800 brides before my retirement, I heard a lot, A LOT, of wedding ceremonies. Sometimes I would be pre-occupied with whether or not an attendant was about to faint, or the commotion stirred up by a flower girl or ring bearer. But there were many weddings that I was able to fully listen to the ceremony. Some were so beautiful, personal, and tender that my eyes would water. I remember once when the minister was telling the groom to pursue his bride every single day. To run after her and never let her wonder about his devotion. So many words of wisdom imparted on starry-eyed love birds. Words that were good reminders for me, as well.
There is so much more, SO MUCH MORE, to a wedding than the photographs, flowers, and food. While those contribute to the special memories, they are not what marriage is all about. I do not know the exact words we said but I do know that Mike and I made promises to God, with family and friends as witnesses, that we would be there for each other.
Just 17 short months after that day, Jacob was born. Seems that is when the journey began that would really put our vows, our promises to the test. I think it is safe to say we experienced better and worse, richer and poorer, sickness and health.
Every parent knows that dreams often change when it comes to raising a family. Mike had three siblings, I had two. I loved the idea of a large family. And then we heard words describing Jacob that made me rethink having four children.
With our wedding being just days after Valentine’s, those two special occasions sort of merge into one celebration.
As I’ve said before, Jacob isn’t fond of a big party. Too much of what some people feel is a good thing, is indeed, too much for him. But this year, he had the best Valentine’s Day and the week leading up to it, he has ever had. Without going anywhere. And it had very little to do with me and everything to do with you who have loved him in so many ways.
He got a package one day with a new shirt. And an early Valentine’s super fun pop-up card.
A few days later a friend was here and he was obviously happy to see her. He twirled while he ate cinnamon biscuits for breakfast. And danced the La Cucaracha while she joined in. Made for unexpected fun with someone besides parents.
On another day, he got 4 cards plus his Sunday School lesson. He enjoyed, absolutely enjoyed, every single one. He likes to compare the different stamps—a flag, an owl, a globe, he looks at his address and the return one.
Some cards are simple and some are elaborate, some have surprises inside, some are shiny and some a matte finish and they are all equally exciting. He will enjoy them until they have greasy fingerprints from a bologna sandwich, a chocolate smudge from candy, or spaghetti sauce from lunch and I have a feeling he will feel the love!
Jacob will not experience the love and commitment that comes from a spouse in marriage. He won’t know the love a parent has for a child. However, he knows the love of God. He has felt the love of family for his entire life. And, because of you, he experiences the love of friends near and far that bless him and us in beautiful ways.
We had no idea, NO IDEA, what our future held (who does?) when we repeated our vows, ate wedding cake, and scurried away from the church, amidst rice pellets, that winter day. But, we did have what we needed. A deep love. A love that comes from our faithful God. A love that has carried us through every season.
What’s love got to do with it? Everything.
There Is Love (The Wedding Song) sung for us by Bucky Owens
He is now to be among you at the calling of your hearts. Rest assured this troubadour is acting on His part. The union of your spirits here has caused Him to remain, For whenever two or more of you are gathered in His name, There is love. There is love. Oh, a man shall leave his mother, and a woman leave her home. They will travel on to where the two will be as one. As it was in the beginning, is now until the end, Woman draws her life from man and gives it back again And there is love. Oh, there’s love. Well then what’s to be the reason for becoming man and wife? Is it love that brings you here or love that brings you life? For if loving is the answer then who’s the giving for? Do you believe in something that you’ve never seen before? Oh, there’s love. There is love. He is now to be among you at the calling of your hearts. Rest assured this troubadour is acting on His part. The union of your spirits here has caused Him to remain For whenever two or more of you are gathered in His name There is love. Oh, there is love.
Jacob is unpredictable on some many levels. Even food, but typically he loves, LOVES, cheese toast. Occasionally, he will want to wait and eat it later but that is pretty rare.
Or eat part and then save a little for a snack:
I always make six pieces. Yes. Six. As long as I can remember, he folds the piece in half and takes a bite out of the middle first. Does that to all six pieces and then starts on the rest.
One morning a couple of weeks ago, I made cheese toast on homemade sourdough bread and set the, now cool, pan on the counter. Went to his room and told him breakfast was ready. He hopped up and followed me into the kitchen.
He reached for a piece and started on it before I could even get a plate. No problem, who needs a plate? We’ve gotten to where, the pan is his plate when it comes to toast!
I opened the refrigerator to get juice and turned and saw this:
I could read his mind: ‘Excuse me, mam,’ ‘I didn’t order this.’
“But, it’s a favorite. You always like cheese toast.”
‘I took a bite, and it just isn’t what I’m hungry for.
“But sir, I made that for you and you like it any time of day. Morning, noon, or night.”
‘Not today. I don’t want it.’
“Okay, so what would you like for breakfast?”
‘What I really want is Chicken in a Biskit crackers.’
“And, that is what you can have sweet buddy!”
Some days, you just want to switch things up a bit. He was happy and so was I.
Who—whoever you are What—whatever your current situation When– whenever you have wished for a change Where-wherever you find yourself
Today is a new day. And, it is a gift!
You can do with it the same as you would if it were a beautiful package wrapped in shiny paper and tied with an enormous bow. You can set it aside to open later. You can throw it in the trash. You can give it back and continue with what you had. Or, you can thank the giver and tear into it excited to see what it holds.
At Christmas, as we finished lunch, our youngest granddaughter said, “Nannie, when can we open presents?” She was excited about what each gift held. With the expectation that it would be something pretty good.
It is safe to say she didn’t decide to open it another day. Or toss it in the trash. Or pretend she wasn’t interested. She was all about checking it out right then and there.
Even if mornings aren’t your ‘thing’ and it takes you a while to embrace the day, if you will accept it as yours, you’ll enjoy it a whole lot more.
So, it seems that on Tuesday, Punxsutawney Phil said there will be 6 more weeks of winter. I’m not positive Phil has been accurate each year but for a groundhog, he seems to know his stuff. Where we live the winter has been mild and it seems spring is already trying to make an appearance. But for some, that prediction of more winter might have been met with groans and dread.
We don’t always get what we want. We all have hard stuff. If you haven’t you will. That is life.
Some days I am overwhelmed from the start. Some days I truly think, I cannot continue ‘like this’. That is when a change needs to occur.
Insanity Is Doing the Same Thing Over and Over Again and Expecting Different Results. Some attribute the quote to Albert Einstein but seems no one is positive. All I know is it makes good sense. If your days aren’t going well, try something new!
Take steps toward change. You have been given another day. Another chance to do something with your gift.
Keeping Jacob home and both of us being retired now, the truth is, almost every day seems like Saturday. And while many Saturdays were work days for me in the past, there is something great about a relaxed Saturday. Those are like the very best kind of presents. And I like to tear into it and enjoy it to the fullest.
So we’re not giving up. How could we! Even though on the outside it often looks like things are falling apart on us, on the inside, where God is making new life, not a day goes by without his unfolding grace. These hard times are small potatoes compared to the coming good times, the lavish celebration prepared for us. There’s far more here than meets the eye. The things we see now are here today, gone tomorrow. But the things we can’t see now will last forever.
2 Corinthians 4:16-18 The Message
Every minute of every day is new. We’ve never lived it and won’t again. Thank God for giving you this very moment.
Maybe write EDG somewhere as a reminder.
Each Day is a Gift!
Matt Redman and Steve Angrisano wrote a song called 10,000 Reasons. Part of the lyrics come to my mind when I think about God giving me a new day:
The sun comes up It’s a new day dawning It’s time to sing your song again Whatever may pass and whatever lies before me Let me be singing when the evening comes
Bless the Lord O my soul O my soul Worship his holy name Sing like never before O my soul I’ll worship your holy name You’re rich in love and you’re slow to anger Your name is great and your heart is kind For all your goodness I will keep on singing 10, 000 reasons for my heart to find