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.

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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.

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

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!  

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? 

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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

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!

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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.

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.  

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 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

Gestures become your language,
When you have no words to use.
However, creativity and resourcefulness can be abused.
What better way to avoid leaving home,
But to hide things to prevent being able to roam.
For this reason I have come to believe,                                                                                      That stalling is his calling.

NO SHOES NO SERVICE said the post,
Hiding shoes, his specialty to boast.
If it is his own you seek,
Here are some suggestions to take a peek.
The toy box is a favorite place,
Check the bathroom sink or tub to help solve the case.
On the kitchen table they are plain to see,
But why look there before you flee?
And, in the pantry, that’s a good spot.
If you’re hungry, you’ll hit the jackpot.
He’s quick to throw things under his bed,
Hoping you’ll search the closet instead.
He is most amused to watch me crawling.
I am quite sure, stalling is his calling.

To go anywhere we need our keys,
Hiding them has become his expertise.
I watched as he took mine from the bar,
Unbeknownst to him, he was on my radar.
He casually walked over to his dad’s work bag,
Then dropped them in, though he couldn’t brag.
Had I not witnessed his sneaky move,
The next day we’d be stuck at home though he wouldn’t disapprove.
I have frantically looked for my keys in a drawer.
Knowing I’d just had them a few minutes before.
Only to find them in a cabinet above.
Keeping my irritation in check is a labor of love.
The signs are all there, stalling is his calling.

Jacob is watching, you better believe,
Without my purse, I cannot leave.
He’s found creative places to stash it away,
My favorite is the salad spinner he chose one day.
I’ve spent minutes backtracking my steps,
To spot it in a laundry basket all unkept.
Shoved in a kitchen cabinet has been attempted.
Paying attention to his clues is highly recommended.
Occasionally he simply moves it from one place to another,
Throwing me off and making me late, oh brother.
I am positive of this – stalling is his calling.

He wants his sound machine before going to bed,
But carefully hides it to stay up later instead.
Shaving is no fun so can we put off doing that?
The pantry again is where it’s at!                                                                                                 He’s hidden the pill crusher with his meds inside,
To keep from taking it until I could find.
And try reading the yellow pages for a few more minutes.
The interesting information you’ll find is without limits.
While usually his motives are to delay,
Most could be chalked up as child’s play.
He is often watching as we search the house,
With his eyes following but quiet as a mouse.                                                                          And while he cannot speak, his mind is turning,                                                                            ‘I think they’re on to me’, he is learning.                                                                                     ‘Oh no, she’s getting warm, it’s right in front of her.’
‘Oops, wrong turn, cold, cold, and even colder.’
Or, counting in his mind how long it takes,
And patting himself on the back for our mistakes.
Our frustrations are probably entertainment for him.
Truth be told, afterwards we can also laugh at them.
Yes, stalling is his calling.

After reading this poem you will probably agree.
His techniques are demonstrated with great glee.
He has got it down pat and is happy as can be.
For he has perfected his stalling degree.

#stallingishiscalling

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“A DOG is the only thing on earth that loves you more than he loves himself” – Josh Billings

Anyone who knows our family knows we are dog crazy and have loved many dogs over the years.  This post, however, is dedicated to Barkley and his love for Jacob.  And Jacob’s love for him.  Pretty much all of Jacob’s life we have had at least one inside dog.  Most have been curious about Jacob and shown him some attention.  Especially when he’s in the kitchen because of the strong possibility he will drop something while he’s eating. But it’s quite hard to tell how Jacob feels about them. Being non-verbal makes sharing emotions difficult.  And, in addition, there is often a disconnect in autism.

We adopted Barkley when he was 7 months old.  He fit in perfectly with our family including another golden retriever.  The top two pictures were taken just a few weeks after getting him.  There are several (not shown) photos where Barkley is on Jacob’s bed watching him.  Look close at the upper left and you’ll see Jacob’s expression showing he is happy about his company.  My favorite, though, is Jacob beside Barkley with his head hanging off the bed.  If you only saw that one, you’d not know who imitated whom but clearly Jacob copied Barkley.  I LOVE this! Jacob was thoroughly enjoying having him in his room.  Lower left is Barkley by Jacob on his bed at our cabin in the country.  Sweet memories repeated often.  Then, Jacob and Barkley interrupting my laundry day by playing on the bed.  The last one was a common occurrence of Barkley near Jacob in case he dropped a crumb, and Jacob propping his feet on him.  This was taken two months before Barkley’s death.

On the eve of Thanksgiving 2013, all of the Pigfords were gathered at our country cabin when Barkley let out a yelp and within minutes took his last breath. Dying of heart failure from a murmur he never outgrew. We were in shock and completely devastated. But, I really had no idea how Jacob would react. He basically hung out in his room that trip so he wasn’t aware of the crying, anguish, and heartache we were experiencing.  Would he show any emotion?  How would he let his feelings be known?  Exhibit negative behavior?  Could he understand he was gone?  On that bitter cold Thanksgiving morning, we buried sweet Barkley there in the country.  Coming home without him was terribly hard.  Tears flowed as I drove and talked to Jacob about why I was so sad. I wondered if and how Jacob would miss him. Barkley had been a constant in his life for 8 years.  I quickly made copies of photos of Barkley and put them in two small photo albums for Jacob.  It wasn’t until later that I came to really understand that their relationship was indeed special.  Now 5 years later, Jacob still looks through those photos weekly and usually stops at one or two wanting us to talk about the picture.  It is a precious time of remembering a most special boy who crossed The Rainbow Bridge too soon and how Jacob had connected in his own way and obviously loved him very much.

Thanksgiving is about expressing gratitude for all of our many blessings.  Today, I am thankful God gives us pets to love and care for, while they in turn show us pure, unconditional love.  A love that is one of life’s most beautiful gifts. Loving us more than they love themselves.  A love with no limits for Jacob.  For which I’ll always be most grateful!

HAPPY THANKSGIVING!! 

About a year ago, I came home from a holiday market with a 2018 calendar of photographs showcasing beautiful scenery from around our state. The photographer is a former high school classmate of mine. Within minutes of me walking in with it, Jacob had to see and started flipping through the pages. He loves slick finish and colorful pages so this was super appealing to him. Over the next month before it was put on our refrigerator for the new year, he’d often find it to look through. Studying some pictures for minutes and others only seconds. Once it was hung up in use, he never pulled it down or even seemed to notice it.

Then earlier this fall I attended another market where that classmate had a booth. I proceeded to tell him how much Jacob enjoyed the calendar. As I purchased the 2019 version, he handed me a 2018 one to take to Jacob. Upon arriving home, I immediately took it back to Jacob’s room.  You can see in the top row of photos how he is studying each page. What a simple gift that made him so happy.  He held it looking from month to month with such careful thought.

Of course, it wouldn’t do that Jacob now had his own to thumb through. It wasn’t long before he found the new one I had put away.  He pulled it out of the bag and had to examine it, too.  I have found him several times with the 2019 one in his lap. (Bottom row of photos.) Obviously he realized it contained a different set of impressive pictures to enjoy.  Makes my heart smile at how a small thing can bring him so much pleasure.

For the beauty of the earth, for the glory of the skies, for the love which from our birth over and around us lies; Lord of all, to thee we raise this our hymn of grateful praise.  

“Sign me up for a trial.”  Said no one.  Ever.  Or, at least not me.  The testimony of a friend who lost her young child to drowning relates that she is confident when she gets to heaven and God explains the ‘why’ that she’d be willing to go through it all over again. That has stuck with me for over 30 years.  When I get to heaven and God’s plan is unfolded before me, I pray it reflects my faith when it comes to the ‘why Jacob’, ‘why me’, ‘why our family’, all of those ‘whys’ that come more often than I’d like to admit.  I truly believe with everything I have that God orchestrated our family to bring glory to Him. And yet, some days I don’t want to take the test.  Please not another rough day driven by autism.  Hard, hard circumstances can make us crumble.  But, remaining diligent pays off.  I wrote this in my Bible but didn’t jot down the author: ‘Make up your mind before anything happens that you will count it all joy for you are joined with God. Joy is an experience that is happening on the inside. Blessed is to have God’s life—God’s character. God is able to teach us more lessons in the hardships than the happy times.’  I like that – MAKE UP YOUR MIND!  Life with Jacob can be one trial after another.  But, through it I’ve learned patience, forgiveness, creativity, compassion, tolerance, empathy, peace, humility, and so much more.

A chorus we sang in church years ago became my theme song.

God will make a way
Where there seems to be no way
He works in ways we cannot see
He will make a way for me

He will be my guide
Hold me closely to His side
With love and strength for each new day
He will make a way, He will make a way

I remember discussions about giving up the dreams we had for Jacob.  What would he ‘be’ when he grew up.  Mike would always say, “I just want him to be happy”.  His happiness, his joy is mine.  Both come from Christ alone.

You may be in the middle of the hardest ‘test’ you’ve ever faced. I can promise you God will be with you.  He’s been with us all along.  He knows it isn’t easy.  His arms are open wide to carry you when you can’t stand.  James 1:2-3 – Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance.  And, from Romans 5:3-4  – Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. 

Make up your mind and HE will make a way.

Jacob doesn’t care for pound cake.  Jacob doesn’t like lemon.  Therefore, Jacob won’t eat Lemon Pound Cake. Or will he?

We left a neighborhood that we loved to be closer to the day services program that Jacob attends.  Within a few months of moving in we decided to participate in a Neighborhood Night Out and open our home.  We’d met a few neighbors but wanted to get to know more and thought this would be a great way to make new friends.  In the invitation that went out, I enclosed a card with Jacob’s picture and just a little about him with our contact info.  This was mainly for security sake in case anyone ever saw him out alone, they’d know he would need help and immediate attention.

Because it was a community sponsored event, I invited the Mayor of our city and the Chief of Police.  They were gracious enough to stop by along with quite a few families on our street.  I prepared the refreshments and one was a cake I’d made for years.  A cake Jacob had NEVER shown any interest in.  A Lemon Pound Cake.  Jacob wondered through the house a few times just to check out our company.  As he casually walked through the den in the middle of our guests, he quickly snatched a piece of cake off a lady’s plate!!!  I was horrified but she wasn’t bothered at all.  I had the thought, ‘he’ll taste it and set it down because he won’t like it’.  I was wrong.  He came back through the room and grabbed another piece from another lady!  Good grief.  The little sneaky thief.  At least the Chief of Police had already left and didn’t witness Jacob stealing cake.  Everybody got a big laugh out of it and honestly put me at ease.  Having knowledge of Jacob before they walked in had given them an idea that he might behave differently.  And he did.  It was quite the evening making fun memories and paved the way for some special relationships.  A little about the two ladies Jacob stole from:  Victim 1) first to welcome us to our neighborhood and was already aware of Jacob and had a tender heart just for him.  Victim 2) I had never met until that evening but when she walked in the door she proceeded to tell me about her two boys.  Both with autism.  Think what you will but I believe it wasn’t a coincidence that these two ladies were in our home when Jacob decided to sample someone else’s cake!  Sweet friends that still laugh with us about Jacob stealing cake right off their plates.

And get this –  Jacob has’t eaten Lemon Pound Cake since.  Guess it was one of those times that it was more appealing on someone else’s plate.

NOTE:  Again this week we hosted a neighborhood party.  I love it when Jacob ventures out of his bedroom as it gives people an opportunity to meet him.  However, we’re always on edge, just a little, wondering what he might do.  I am pleased to announce he did not steal food.  However, a friend coughed and well, last week’s post tells what happened next: Hold that sneeze!

No coughing or sneezing allowed!  Seriously????  Jacob cannot stand it.  Not sure if it startles him, hurts his ears, germ phobia (NOT!), or what.  All I can say is if you do either, there is a good chance you’ll receive his wrath.  He has a radar and if he is in another room but hears either, he will come find you.  You’ve been warned.  He may quickly grab your shirt to startle you or he may give you the stink eye letting you know he means business.  Funny thing is he’s trained me so well that even when he isn’t around, I realize I try to stifle a sneeze or hide a cough.  Okay, so that is not funny.  Now obviously this isn’t healthy but you do what ya gotta do to keep Jacob happy!