The Granny Diaries

Do You Know Doh?

I signed up for a simple three week class.

I've done this before and found helpful advice but nothing that was earth-shattering. 

This time was different, maybe not earth-shattering ( no rumbles of the fault lines here in SW Ohio) but certainly soul-awakening.

I was supposed to learn about publishing in the art world.  Instead, I learned what I want from my life.

Most folks know that I have four children and that one of them, Alex, has a challenging life path.  I have spent many years working toward creating a fulfilling and meaningful life for him.  I was a disabilities advocate, lectured medical students about the impact of care on the family, wrote for and edited a statewide newsletter.  Several of my articles were reprinted through the local Down Syndrome Association. 

Later, I wrote for Christian publications.  But it all came to an end when Alex's needs required my full attention.

Many of you also know that my marriage of 38 years is coming to an end.  It has not been my choice but I have come to accept that it is unavoidable.  I have learned that I can and will survive (apologies to Gloria).  Part of my healing has come from looking at myself, my strengths, and my possibilities in the future.

Which brings me back to doh, hoh hoh, hoh! (apologies to Julie Andrews)

Jenny Doh, of Crescendoh!

Jenny is offering "The Keys to Publishing & Building Creative Momentum" as a 3 week class.  Our first assignment charged us with creating a statement of intent for publishing.

 

It took a few hours, but I managed to generate a list.

That was the easy part.

Then we were asked to use her "wheel" method of planning to picture how all of this fit into our life and activities.  I have used the "circle of influence" style of mapping for Alex's needs for many years with the professionals in his life.  I had a difficult time breaking from this method so I created a hybrid.

I like what I see.

Of course, it had to be fabric and thread.  (I gotta be meeeee! Apologies to Frank.)  Note:  All apologies due to the fact that I am singing these songs off-key as I type.  Loud.  The dogs are hiding.

There is still time to join the class.  Check it out.  I am enjoying the sense of community in the group.

But I saved the best news for last!  I have been accepted into my design program at UC Blue Ash.  This old dog is going to learn some new tricks starting in the fall.  I think I am more excited about going back to school than I was when I first entered UC 40 years ago.

So I close tonight with one last song:   "Ch, ch, ch, changes...."

Thank you David Bowie.  Say "Hey!" to Iman for me.

 

 

Four Grand Weekend

The only photo of Miss Cora actually standing still. 

The pacifier must be the secret.

 Maggie was just as busy but the way to her heart is a fire truck. 

She says M&Ms are good, too. 

 I have no explanation. 

Lucy can always find her pose, even with a plastic eggplant.

Even Ethan was worn out by Saturday night.  

 
 Alex had a nice visit with SIL Emily. 

Even the Meerkat seemed to enjoy himself.

It was a great weekend!  

We Interrupt This Craft Binge for ... Life!

I was going to post about several topics this week.

• The nature of Indie Craft and art induced flashbacks to the years 1968 - 1973.
• The many bags I am about to place in my Etsy shop.
• The Irish history of the Gorman,Hartman, Herancourt, Nelson, and Jones families.
• My new favorite books
• Favorite blogs

Instead, I was hit by the A-bomb.

As in Alex.

I know, he looks like he wouldn't hurt a fly in this picture with his caregiver.

Don't let appearances deceive you, he can erupt with very little warning.

And most days I can feel guilty with very little warning.

99.9% of the time, his care-giving staff are excellent.  When he was very sick a few weeks ago, they provided round the clock care, cleaned up various bodily fluids emanating from various bodily orifices, and took him to the doctor and the hospital. They oversaw blood and other tests. They did not complain (to me).  They were there 24 hours a day.  They deserved a humanitarian award.

Wednesday, something went wrong.  It would not have been a big deal for most twenty year-olds, but it was major for this one.  This time it involved two police cars.  We usually only have one.

Statistics vary for the incidence of childhood autism spectrum disorders.  The numbers don't matter because in this case, misery does not improve with company.  Many families spend years beating themselves up trying to figure out how this happened to their child, and their family even though it doesn't help. Families of children with significant disabilities have incredibly high divorce rates.  Autism does not impact just the lives of those who have that diagnosis, it impacts whole families.

This week's episode of Parenthood just scratched the surface of how siblings are affected.  Max's behavior would be a picnic for my kids.  We would happily trade the bites, screams, and isolation they endured for a pirate costume.

In Alex's case, we don't have to look for answers.  He was born too early.  He was a surviving twin.  He had major surgery and lost part of his bowel before he was four days old.  He was born with bilateral microphthalmia; his eyes did not develop.  He is blind.  He has seizures.  He has OCD.  He has Cerebral Palsy.  His back is twisted.  His brain cannot process information properly.  Alex was not expected to survive.

And when things go wrong, I blame myself.

Don't get me wrong.  I know that it was Alex and not me taking swings at the football coach.  Years of therapy have helped me put things in perspective, but when these things happen, I still feel the shame I felt at his birth when I could not keep both babies alive and well.  The shame of not being more aggressive with my doctors when I knew something was wrong.  The shame of not giving Alex a better shot at a normal, happy life.  It takes a few days to exorcise those emotional responses.  Even when I know...

There was a meeting at the school yesterday that was scheduled before any of this hulabaloo started.  We were trying to figure out what Alex would be doing next year.  This big team of educators, caregivers, and therapists took an hour out their day, after school hours,  to make plans for my child. 

How do you thank people for this sort of kindness?

At the end, several folks on the team listed all the progress that Alex has made this year.  They wanted me to know that it was not all police cars and aggression.  They wanted me to know that he can get a drink at the fountain without pounding the students ahead of him with his cane.  He has actually entered a shopping mall without screaming.  He has attended several classes in the regular special ed classroom.

These things may not seem important to the rest of the world, but for us they are miracles.  It was easier to put away my nonproductive negative emotions after hearing their words.

I ask again, how do you thank people for this sort of kindness?

We thank you, caregivers. 

We thank you, educators! 

We thank you, therapists!  

Thanks for making Alex's life more interesting, productive and happier! 

I thank you every one!

Craft Binge: Days 2-4 or The Best Laid Plans

My sewing room cheering section

It's been a challenge to stay on task the past few days.  The weather has been delightfully springlike.  I had breakfast with a good friend, dinner with another friend, and have been checking in on Alex.  I have retrieved keys for folks, lugged potted plants, and baked cakes. Still, 1950's Barbie, My Littlest Pony and the rest of the gang have been waiting to greet me as I resume work on the ice cream cozies.  The pile is growing but I have been distracted by the "Aha! moments" that make me want to reach for sketchbook or another pile of fabric.

I am thinking that these flowers in black and white could become necklaces.  Or pins.  Or get pinned to a bulletin board.  Or left in a box for my children to throw away when they send me to the nursing home.

So I can watch The Wheel of Fortune with Alex and the other old folks in the Home.

Weekends with Alex, Pat, and Vanna

This summer our son, Alex, moved into his own house.  It's a rambling cottage with a wonderful sun room, bedroom, music room, kitchen/great room, two porches and a basement.  Alex has a full time staff to help him navigate life.  As you can tell, he is not your run of the mill 20 year old. 

Alex has a list of things that bother him.  Medical settings would be at the top of that list.  That's why I am dreading tomorrow morning's jaunt to get blood drawn at the hospital.  We plan to do a hit and run at the crack of dawn because he can't have any meds or breakfast until we are done and Alex really does not like changes in his schedule.  I tried to bribe him with breakfast at the IHop, but he really wants to get back home as soon as possible for his usual meal of strawberry yogurt and peanut butter toast (three pieces, liberally coated, cut in half, straight, not from the corners) and ice water with a straw.

The school calendar dictates the boy's life from Monday through Friday. Alex's weekends are a bit less scheduled except for 7 PM on Saturday.  No matter what else happens, Alex and his father sit down to a fast food dinner and join the millions of folks in nursing homes across America to watch Wheel of Fortune and Cash Explosion, our local lottery show.

We wouldn't know that it was 7:00 without hearing Pat and Vanna in the background.  Alex only eats dinner when Wheel is on the television.  This is an Alex rule and is one of the reasons he lives in his own little house with a full time staff.  I have watched enough Wheel of Fortune to last keep me satisfied until I check into my own room at the nursing home. 

Good Night, Pat!  Good Night, Vanna!  See you in the morning, Alex!