Preconceived Christmas

Christmas, the most wonderful time of the year. And yet, for many, the holiday is hard. For some people it is, and always has been, a dreaded time of year. Depression, negative memories, chronic illness. For others, it may be a rough season but they believe things will get better in time. They may have a new circumstance that makes joy and happiness hard to grasp right now. A recent death of a loved one, job loss, disease, other heartache. However, they are able to hang onto the ‘this too shall pass’ belief. Things will get easier.

We taught our children from a young age that the focus of Christmas is the Christ Child. Jesus is the Reason for the Season. That the traditions of Christmas reflect our beliefs—the tree, the lights, the songs, the star, the angels, the gift-giving and receiving, all are symbols of our Christian faith. Our preconceived notion is to include all of these and more to make it as meaningful and magical as possible. The wonder of those things is part of the enjoyment. However, pulling Jacob into those traditions can be another story. And that’s okay. It is still a celebration. Our family doesn’t have to do things like other families. I know and accept that, even if sometimes I am envious of the apparent ease in how those traditions seem to be carried out beautifully with other people.

Jacob has Christmas lights blinking in his bedroom all year long. He has a Christmas tree in his room each December. He will not help decorate but usually enjoys the ornaments just as they are placed. (Some of you realize he does toss random items on our trees adding unique designs.) Occasionally, I’ll find a majority of his ornaments scattered on the floor. He listens to Christmas music and watches Christmas DVDs whenever he is in the mood. So in some ways, Christmas is in the air around our home year-round.

For me, I find the gifts are often the tricky part of Christmas. We cannot put gifts under his or our family tree because he would open everything (whether it has his name on it or not) right away. We aren’t able to include him on gift giving choices or ideas. And, buying gifts for Jacob can be difficult. The things that bring him pleasure are mainly music and chocolate. Chances are, if he likes it, we already have 2, 3, or 4 of them. He has no wish list. And yet, I put thought into what I buy for him hoping it will be something he’ll really like. He will enjoy. He will choose to wear. There is great satisfaction in finding something that is a win in his eyes. For him, opening a gift is probably as much fun as the gift itself. Although, he does open gifts with anticipation that surely the inside is even better than the packaging. Often the gift itself may be a disappointment. One might think that an adult who behaves as a child might exhibit the joys and excitement a child would. Not Jacob.

I have learned that expectations often lead to disappointment. Expecting is one way of hurting ourselves. We’ve been on this autism roller coaster for close to 4 decades. Why do I even let myself expect a different outcome? ‘This too shall pass’ probably isn’t happening. Christmas Day this year was harder than usual for some unknown reason. I was excited about making mini cinnamon rolls Christmas morning and singing Happy Birthday Jesus. I was excited about his presents. I wanted him to be excited too. He wasn’t. Didn’t care. Oh how I wanted him to care. He quickly opened his presents and that was that. He was done and Christmas was over. It was basically a big let down. I bought him things with intention and deliberate thought hoping he would find enjoyment and pleasure in what I chose. Maybe I need to focus more on the thought and let myself enjoy the reason for my choices and not so much on the gift he may or may not care one bit about. His favorite thing this year wasn’t a gift but a Bronner’s Christmas catalog that came in early November. And everyday, EVERY DAY, he flips through the pages and points to a picture of an ice cream cone and wants us to talk about it. He won’t eat one but he likes to hear about Dairy Queen ice cream! Just so you know, the keyboard toy that lights up did hold his attention a few minutes so I’m counting it a win. Plus he is having fun with a couple of musical toys given to him by a sweet friend. There were certainly things he enjoyed.

The VERY well worn Bronner’s catalog that Jacob favors.

I’m putting it all out here and showing my selfish nature in the name of transparency. Keep in mind, Jacob cannot talk. Because of this, I’ve not heard him say the words “thank you” in his 39 years. No – “this is perfect, Mom”, or “I’ve always wanted one”, “this is the best present ever, I love it”. No big bear hugs. No huge grin. No signing those words nor using an electronic device to tell us what he’s thinking. It feels so one-sided and it gets old. Very old. Christmas Day, I could not help it, tears flowed. All because I wish things were different. Normal – whatever that is! Wanting his expression to show he felt the magic and meaning of Christmas. I invited myself to a pity party for one. I didn’t party long but I needed the good cry. It is okay to give yourself permission to acknowledge hard stuff. ‘This too shall pass’ isn’t in the Bible, but the promise of God never leaving us is repeated throughout. Look around and know you are not the only one. And this isn’t the end. HE has more in store and it is way better than anything we can imagine. Don’t give gifts for the bear hugs or thank you notes. Give freely from your heart to bless others as you have been blessed.

I really like this quote I ran across a while back :

“Blessed are those who can give without remembering and take without forgetting.” Elizabeth Bibesco

Don’t Peek He’s Gonna Streak!

There is no reasoning or logic with autism.  Where did Jacob get the idea that not wearing clothes is an option? There is nothing I can say that will make him think otherwise.  Sometimes it is amusing and the only thing I can do is just shake my head.  Other times, it is flat out maddening how he’ll refuse to leave an article of clothing on.  How hard can it be?  Wake him up, get him dressed, give him meds, get him in the van, drive to SON Valley.  Some days it just doesn’t work that way.  He can take all clothes off but he cannot put one article of clothing on.  There are times when that fact alone is overwhelming and we just stay home.  Although he isn’t allowed to even pretend nudity is okay!  Believe me, I’m putting clothes on him lickity split!  Just last week I got him dressed in sweat pants and a sharp looking hooded sweatshirt.  He wasn’t exactly keen on the shirt – he snatched it from me and tossed it across the room but wouldn’t settle on anything else so I convinced him to wear it.  Thirty minutes later I went to tell him it was time to go and he waltzes out of his room with only pants and shoes on.  It is 35 degrees outside and he has removed the sweatshirt and undershirt and was all set!  At least, his lower half was clothed! He didn’t get to stay home that day. He chose another shirt, was content to wear it, and kept it on all day!  Score!  

Jacob follows some instructions well.  Some. If we are about to go somewhere or when it is time for bed, I’ll say, “go use the bathroom”, and chances are he will follow through and head that way.  I have to be careful when and where I say it though, because if we are in the kitchen, he may have his clothes off before he gets through the den.  Sometimes he will take everything off, just to take care of business.  Clothes just aren’t important to him and he doesn’t have the mindset that there is anything wrong with not wearing them. Don’t get me wrong, this is not an everyday occurrence and I am truly thankful it isn’t a daily battle.

There are two times of day Jacob is more likely to be in the buff:  1) first thing in the morning after he wakes.  He often chooses to be free as a bird after going to the bathroom.  Underwear has been spotted in various places around our home, such as the kitchen table, den floor, on a lamp shade, etc.  You get the idea. It really is comical to walk through the house and find his clothing in random places. But don’t ignore underwear on the table.  It can only mean one thing – he is presently commando and needs help!  It is not unusual for him to come find us with nothing on and a pair (or two) of underwear in his hand.  And then, 2) the other time of day streaking is a strong possibility is in the evening around bed time.  Why wait until you’re near pajamas when you can drop your clothes wherever you are, right? 

Often when we have guests in our home, I feel the need to forewarn them just in case the mood strikes him.  And struck it has. I never like to hear, ‘Jacob doesn’t have any clothes on!’  But this is our life and thankfully understanding family and friends surround and support us. 

 I often think of the song Ray Stevens released in the 70s making streaking popular. Good thing Jacob isn’t streaking in public places!   https://www.youtube.com/watch?v=XtzoUu7w-YM

I have been thinking we need a sign at our front door.  After all, signs are used to communicate a variety of things.  Warning:  Wet Floor; Beware of Dog; Watch Your Step; Danger: Hazardous Material; and my favorite from a local neighborhood – Slow, Retirement Living, Drive Carefully.  Thinking this might be helpful posted at our home and would offer an explanation:  

Warning:  A Streaker Lives Here 

#dontpeekhesgonnastreak

Jacob’s Jam

In our home, my craft/sewing room is next to Jacob’s bedroom. So, if Jacob is home while I’m working on a project, there is a good chance I am hearing whatever he is doing. Whether watching TV, a video or DVD, playing selections on his keyboard, music on his MP3 player, battery operated toys – he is usually busy and sometimes has multiple things going at the same time. (I know—talk about sensory overload.)

Recently as I spent several hours working, Jacob was mainly playing his MP3 player.  It has a wide variety of music genres downloaded. When Jacob listens to music, he will often play one song (or even just a few lines from a song) over and over and over again. And, again. You know how you’ll hear a song and can’t get it out of your head?  That happens a lot around here.  Today the song he played first and repeated at least a half a dozen times was, “My God is So Great”. It was sung by children and I had a flashback of our young granddaughter singing that song and doing the motions for “My God is so great, so strong and so mighty, there’s nothing my God cannot do, for YOU!” It was a sweet time of God using Jacob to remind me of His power. And it helped me to hear it over and over again. Truly a worshipful moment for me as he played several songs not knowing he was leading me to sing them in my heart – “God is So Good”, “Oh How I Love Jesus”, and “Heavenly Sunshine”.   All while Jacob had the best time bouncing on his bed and twirling around his room, worshiping in his own way.   And what great songs to be on continuous loop!

Before Jacob’s jam session was over, he had added some secular pieces to the mix with what seemed to be his favorite— “Have Yourself a Merry Little Christmas” by none other than, The Chipmunks.  Jacob does love those crazy chipmunks!

May your heart seek to know the greatness and the goodness of our God, born the Christ Child, the One we celebrate this Christmas season.

Jacob’s Great Gran

Only the best Grandparents, get promoted to Great Grandparents!

Today’s post is by a guest contributor. Big round of applause for my Mom and her willingness to share a fond memory about Jacob.  Mom gave me her notes on this three weeks ago and in my excitement to get a draft to her, I accidentally published it for the world to see.  So chances are, you may be reading this for the second time.  That’s okay!  It is a good one and I think you’ll enjoy it again.  

Great Gran

I’m Hilda Jo, Jacob’s Granny.  Today is my Daddy’s 109th birthday.  He is celebrating in Heaven as he has for 20 years now.  Jacob was his first great grandchild and so with his birth, Daddy was promoted to Great Gran status.  And, as he loved his children and his grandchildren, he most certainly loved Jacob BIG.  As all of our family members learned about Jacob’s limitations we all hurt beyond expression.  I’m thankful to say that we never felt that our family was being punished but this was part of God’s perfect plan for our family to include this special person.  And all of us sure do LOVE Jacob Michael Pigford!!  

He likes for me to sing this to him – “I love Jacob, I love Jacob, I love Jacob Michael Pigford”.  And one time is never enough! 

Back to what I intended to write about Jacob and his Great Gran, my Daddy.  Most of the time, Jacob doesn’t seem to be paying attention or even acknowledge hearing what we are saying.  When Jacob was young, Daddy would always try to get Jacob to sit in his lap so he could hold him close, talk to him, and, of course, sing to him!

Soon after Daddy’s death, Terri took Jacob to their home to see Mother (Jacob’s Great Grandmother) and hopefully help him understand that his Great Gran was gone.   She had told him that Daddy had died and was now in Heaven.  Not knowing how much Jacob understood, we were somewhat nervous about how he would act since his Great Gran wouldn’t be there.  However, those nerves were unwarranted as Jacob just acted in a manner totally normal for him. 

Now Jacob loves looking at pictures and Mother had a LOT of pictures.  He could really entertain himself looking through her photo albums.  Of course, he’d look and look and look some more then just leave them on the floor when he had finished, which was the case this particular visit.  Mother, Terri, and I were busy talking in the kitchen while Jacob enjoyed free access to the albums. I don’t recall anyone else being there that day. At some point, Terri went to check on him and pick up the albums when she noticed that each one was opened to a picture of his Great Gran.  What a thrill to our hearts!!  Jacob had gotten quiet and we weren’t sure where he was or what he might be getting into.  Terri found Jacob sound asleep on Mother and Daddy’s bed.  He wasn’t in the habit of always taking a nap during the day either.  Especially not at someone else’s home.  I truly believe Jacob was showing his love for his Great Gran in the way he knew how and understood that he was gone.  What a peaceful picture of Jacob at total rest where his beloved Great Gran used to lay his head.

Jacob 1998

Jacob has proven to us so many times that he is very smart and understands everything we say.  Even when we don’t think he is listening.    

Thank you for letting me share this very special memory,                Hilda Jo Woods