20 years of Jonathan

 

It's Jonathan's birthday today; he is 20 years old.  

 

Can you believe that cheerful butterball (who actually did have a neck, despite appearances to the contrary) has turned into this tall young man?

 Jonathan Sept. 8, 2022 - photo Jeannie Prinsen

Having Jonathan in our lives has given us a different perspective on life than we might otherwise have had. Garbage trucks, geese and seagulls, brooms and shovels, lines of laundry all have greater significance because of Jonathan's interest in these things. Everyone he meets is a friend, and the simplest pleasures give his life meaning and joy.

 Jonathan 2017 - photo Jeannie Prinsen

I wrote the following poem, "Lakeside, with Jonathan" about five years ago and was honoured to have it published in the literary journal Relief. I think it describes Jonathan better than almost anything else could. Happy birthday, Jonathan.

 

Lakeside, with Jonathan

 To the waterfront at Lake Ontario Park we go,
you leading the way to your favourite place: down,

down stone steps to the little cobble beach, where a shelf
of flat rocks stretches into the water. Cross-legged

on a rock, you gaze at the lake, its wind-ruffled surface
dancing with a million bright diamonds. You call out

to the gulls that wheel across the sky, and watch
a half-dozen geese skim the water then swoop

swiftly up and away. You look around
with a smile and say Happy.

This is as abstract as you get, you whose mind anchors
firmly in the tangibles: supper, school, garbage truck.

No bedtime confidences for you, no heartfelt talks
of dreams or hopes, just the familiar, daily repetition.

I could choose to grieve what’s not, or let you teach me
that peace abides in the way water swells and breaks

again and again on the shore, that the seabirds speak
to you as they cry overhead, that the windmills

over on the island are your friends, tall and steady
in the sunlight, their long arms waving hello.

 

A review of Aching Joy: Following God Through the Land of Unanswered Prayer (by Jason Hague)

Parents of autistic children are always looking for companions on the autism journey. Jason Hague's newly released book Aching Joy: Following God Through the Land of Unanswered Prayer provides that kind of companionship.


Jason writes in a vulnerable, honest way about his struggle to accept his son Jack's autism diagnosis and to form a real connection with Jack. But beyond the specific details of the Hague family's life, the book is really about deeper issues that we can all relate to:

• how to balance hope and realism
• how to accept the what-is without sinking into dull resignation
• how to acknowledge struggle without trying to fix, escape, or seek pity
• how to foster the potential in our children without making their achievements all about us. 

For Jason, faith in God is what helps resolve these tensions. However, faith is not presented as a panacea or a source of glib inspirational quotes (Jason specifically mentions the cliche so many of us love to hate: "God never gives you more than you can handle"), but as an anchor in times of real challenge and wrestling.

It's also clear throughout the book that autism is not an enemy. Jason doesn't talk about finding cures or reasons or about "fixing" Jack; rather, he emphasizes over and over the need to connect with autistic people, to participate in how they see the world (something he and his family do consistently, in beautiful and often funny ways), and to foster inclusion and acceptance. I have to say I just LOVED getting to know Jack in these pages. He is such an interesting boy, and I could see so much of Jonathan in him.
 
Toward the end of the book, Jason says, "My story was a messy one ... [but] if I can help other parents -- especially dads -- identify what they are feeling instead of telling them the way they ought to feel, they might, in the end, be better equipped to love their children the way they ought to. They might, in other words, become better fathers." 

I have little doubt that those who read this book will come away with new information, new insights, and a renewed sense of what we all share, regardless of the unique circumstances we face.

Twenty years ago today

Twenty years ago today, this beautiful girl was born. 

In this post I'm going to share Allison's birth story. It's a good story -- and I love hearing other women describe the delivery of their babies, so maybe someone out there is interested in reading this. But if that's not your thing, feel free to scroll on by.

My due date was August 16, 1998. We didn't know if our baby was a boy or a girl -- we had deliberately chosen not to find out in advance -- but we had names ready.

I had a good, uneventful pregnancy. I gained a lot of weight (40+ pounds), and Richard teased me a bit about the fact that for a brief window of time, I weighed more than he did: 172 to his 170. I certainly felt huge, and there was a big "bump" pressing against my rib cage on the left side; my doctor said it was probably the baby's bottom or foot.

In late July, my blood pressure was a bit elevated, so the doctor suggested I go to the clinic at the hospital for some blood work, just so they'd have a baseline in case there were any problems closer to my delivery time. 

So on Tuesday morning, August 4 (the Monday had been a holiday or I would have gone then), I went with Richard to have some blood drawn.

Afterward, as we were walking back down the hall toward the lobby, my water broke and fluid gushed all over the floor. Rich ran to get me a wheelchair, got me to the car and home, and I took a shower and changed clothes.

I was having some contractions, but they were fairly mild at that point. Richard and I had some lunch and then decided to play a game of Scrabble.

Partway through our game -- this was probably around 2:30 or 3 in the afternoon -- I said, "I think we should go to the hospital." The contractions were 5-10 minutes apart by that point, and I was having trouble concentrating on Scrabble words. It's true what they say: as labour progresses, you start to have tunnel vision so that the only things you can focus on are what you're feeling and what your body's doing.

We drove to the hospital and went up to the delivery floor. (Interestingly, this is a different hospital from the one I had to go to for the blood work; the two hospitals handle different clinics and procedures, but they are both a five-minute drive from our house.) 

I told the staff at the nursing station that my water had broken hours earlier and contractions were coming closer together. A nurse -- I remember she had a lovely French accent -- helped me on to a bed so she could check me out. The contractions were beginning to be quite strong by then.

The nurse looked me over and said, "Hmm ... I can really see the outline of the baby. You've lost a lot of fluid. We may have to do an amnioinfusion to replace the fluid so the baby's heart rate is stable during delivery."

"O-kay," I said. (Whoa. They never mentioned THAT in prenatal class.)

Suddenly a huge contraction overwhelmed me. "All right, she's got the urge to push," the nurse called out. A doctor and (I think) a resident came over. 

The doctor was African; he said something to me, and I was embarrassed that I had to ask him to repeat what he'd said because I couldn't understand him. "Has your amniotic sac ruptured?" he said again.

"OH YES," I said, "several hours ago."

The resident did an internal exam. "I feel a small part," she said. "Maybe a hand?"

The doctor checked. "That is a foot," he said.

(No wonder there was so much fluid loss: the baby's head wasn't downward, so there was no cork effect to slow down the flow. And that funny bump that had been knocking against my ribs for the last few weeks: that had been the baby's head.)

After the doctor said that, everything was a blur of activity. Another doctor appeared and they all talked about me and around me. The doctor who had arrived last handed me a clipboard with a release to sign. He told us the baby appeared to be in a footling breech position and that delivering vaginally would likely be quite difficult, and they were recommending an immediate c-section. I signed.

I was wheeled into surgery, contractions coming fast and hard, and was given an epidural. The doctor kept pricking my feet and asking me if I could feel anything -- and just like that, I couldn't. I wasn't able to see anything because of the drape they'd put up, but I felt a lot of pushing and pulling. Richard was sitting by my head with a surgical gown and mask on.

At last the doctor said, "It's a girl!"

"It's Allison!" I said.

At 5:41 p.m. on August 4, 1998 -- twelve days early -- our baby was here.

The details still feel so fresh even after twenty years. Allison's birth wasn't anything like I expected it to be: I didn't listen to calming music or pant through contractions or struggle through exhausting hours of labour. It was intense, fast, and a bit frightening, and the six-week recovery from major surgery was not at all what I had been anticipating. 

But Allison arrived, safe and sound and SO cute with her huge blue eyes.

Today we look back on that day with joy because it was the day a beautiful soul entered this world. She has grown into an intelligent, kind, and gifted young woman. We can't wait to see where the coming years will take her.

Happy 20th Birthday, Allison!

Five Minute Friday: ROUTINE (a trip to the doctor)

I'm joining the Five Minute Friday community today (and yes, I know today is Saturday!) writing for five minutes on a given prompt. 

This week's word is ROUTINE. I went over the five minutes because I wanted to describe a particular episode that illustrates our autistic son's love of routine.

*********

People with autism, at any age, often have a particular fondness for ROUTINE. Jonathan (age 15) in particular thrives on routine in his life. I thought I'd illustrate that by writing about this week's trip to see a doctor.

Jonathan fell and got a mild wrist fracture last month. We saw a pediatric orthopedic doctor in late February, and she gave us a removable wrist brace for him to wear and wanted to see us again in three weeks. So we went back this past Thursday.

The clinic is familiar to him; it's the same place he goes twice a year to see the pediatric neurologist who follows him for his seizure disorder. It is in one of our local hospitals, not far from our church, so we usually park in the church parking lot and walk the 4-5 blocks to the hospital.

Jonathan insisted we take the exact same route we always do -- pretty easy, since it's the most convenient route.

When we arrived at the front entrance, Jonathan excitedly noticed the shovels and brooms over in a corner outside the hospital. He is quite fixated on shovels and brooms, so he hurried over to check them out. He had to move one of the brooms slightly so that it was leaning against the wall just the way he liked it.

When we entered the hospital, we were met with tantalizing cafeteria aromas. "Smell soup and sandwiches!" Jonathan said loudly, for everyone to hear. I agreed it did smell very much like that.

We went into the clinic to check in. The receptionist we got was particularly friendly and greeted Jonathan by name. As he often does, he said a few random things (loudly) like "HOT CHOCOLATE!" She laughed and said that sounded really yummy.

We got settled in the waiting room, and Jonathan immediately wanted to get out the mini DVD player  and the Wiggles "Rock-n-Roll Preschool" DVD we'd brought. This is the DVD we brought last time we'd gone to the doctor, so of course it made sense to bring the same one this time.

While we waited and quietly watched the Wiggles, Jonathan kept a furtive eye on anyone in the waiting room who was eating or drinking anything. He is extremely interested in putting wrappers in the garbage or empty coffee cups and lids in the recycling, and thinks nothing of going up to a stranger and grabbing their granola-bar wrapper or water bottle right out of their hands. So I monitored his interest in these fascinating goings-on and made sure he knew these were other people's things and he could not have them.

The nurse came to call us in. Jonathan jumped up and said, "HOCKEY GAME TONIGHT! HOT CHOCOLATE TONIGHT!"

We went into the examining room and waited for the doctor. Jonathan started to climb up on the examination table to lie down, but I told him that would not be necessary for a wrist exam. The doctor came in, checked the wrist, and assured us it seemed to be all healed up, so we started getting ready to leave.

Then the true crisis happened: we could not find one of Jonathan's mittens. Part of his love of routine is wanting to wear the exact same mitts, hat, and coat all the time; he has been wearing these same gray mittens for 2 or 3 years because he almost never loses anything. I knew I'd put his mitts and hat in the bag with the DVD player, but now only one of his gray mitts was in there. I checked the examining room and the waiting room, but no luck: the mitten was gone. 

"GRAY MITTS!" Jonathan yelled. 

"I think it's gone - do you want to wear my black ones?"

He put one of my black mitts on for about two seconds, then yanked it off. "GRAY MITTS!"

"I guess we'll have to find it later," I said. We left the clinic, Jonathan still complaining vocally.

We got back to the car and I drove him to his school (he was arriving about an hour late because of the appointment). His Educational Assistant came out to meet us, and Jonathan immediately yelled, "MITTENS GONE!" 

I told the EA about the lost-mitt crisis and said I had put the rejected black mitts in Jonathan's backpack.

When I picked Jonathan up at the end of the school day, he was wearing the black mitts without complaint. Soon he won't need to wear mitts at all, and by next winter he'll have forgotten about the gray ones altogether.

I HOPE.....

*******

Five Minute Friday: TIRED

Today I'm linking up with Five Minute Friday, where we write for five minutes on a given prompt. This week's word is TIRED.

*************************

The picture below shows a plaque that I made when I was a teenager, and that I still have.

At the time, my dad was sawing wood, and this thin slice of a log ended up on the woodpile. I took it inside, dried it, and then simply used a pencil to draw a picture of a pathway and mountain and write these (now faded) words:

"They that wait upon the Lord shall renew their strength;

they shall mount up with wings as eagles.

They shall run and not be weary,

and they shall walk and not faint."

Isaiah 40:31 (King James Version)

This was my favourite Bible verse in those days, and I still consider it one of the most encouraging passages in the Bible.

Two of the verses before it say,

"Do you not know? Have you not heard?

The Lord is the everlasting God,

the Creator of the ends of the earth.

He will not grow tired or weary,

and his understanding no one can fathom.

He gives strength to the weary

and increases the power of the weak."

Isaiah 40:28-29 (New International Version)

 
Tired ... weary ... weak. These are familiar words. I often get tired of the demands of parenting. I get weary of repetitive words and activities. I feel weak when I stop and think about the overwhelming prospect of a lifetime of caregiving.

But in this Bible passage, God seems to be speaking directly to me -- saying, "Yes, I know you get tired and weary and weak ... but I do not. I understand what you are going through. I never sleep. I made this world, and I will help you. I will strengthen you and give you what you need to keep going."

When I made the plaque 40-some years ago, I didn't know what challenges the coming years would bring -- and maybe it's just as well. But I think I had a sense even then that reliance on God to renew my strength was going to be an important theme in my life. Today, I draw encouragement from the One who never grows tired or weary.

Five Minute Friday: PURPOSE

Today I'm linking up with Kate Motaung for Five Minute Friday. This week's word is PURPOSE.

**************

I know there are many people who search for years -- a lifetime, even -- to find their purpose. Why did God put them on this earth? What is their calling? How can they find out what they are really meant to do?

When I get up in the morning, I do not need to look far to find a purpose. Sometimes, one of my purposes has crawled into bed beside me and is laughing when I open my eyes.

My purpose is to be a mom to two kids. At the moment, two teens. They are both on the autism spectrum and have some significant challenges -- yet they are as different from one another as night is from day. Allison (18) is quiet, introverted, a gifted writer and thinker. Jonathan (14) is loud, smiley, and snuggly, and still loves Barney and the Wiggles.

I don't know what the future holds for them. Then again, I don't know what the future holds for me or my husband. That's in God's hands. Right now, my purpose is to be there for my kids, day by day. It's difficult at times -- but it's also kind of simple. Supporting them is the priority. What other people think, what other parents are doing, what other kids their age can do or are doing: none of that matters. 

My purpose is not out there somewhere; it's right here. Today I pray for God's strength to fulfill it, and to keep fulfilling it for as long as He is giving it to me.

photo by Michelle Vandermeer, June 2014