Showing posts with label autism mom. Show all posts
Showing posts with label autism mom. Show all posts

Tuesday, August 5

No Words

My son Henry has severe autism with profound intellectual disabilities. One of the main challenges we face is that he can't talk. He is able to communicate some simple needs and wishes but these are pretty basic. Before you even ask: why yes,we have whole-heartedly tried a multitude of different kinds of trainings, interventions, diets, supplements, augmentative speech devices, PECS systems and etc in fact so very many that I am not going to bore you or myself by reciting them all. We have brought Henry to all kinds of speech therapists and centers and famous special needs specialists many of whom told us confidently "Oh, well, those other people are just idiots, I will have him talking in 6 weeks (or whatever) no worries!" raising our hopes again and again only to have them all admit defeat, despite combined intense and best efforts. So, please, no comments asking me if I have tried X and such therapy or X and such diet, okay? Thanks in advance! :-)

So, when Henry gets unhappy and frustrated we very often cannot understand what it's all about. Is he sick or hurt? Is he sad? Is he frustrated because he wants us to do something we are not doing? Is he bored or lonely or missing someone? Is it just an adolescent upswell of non-localized emotion? We usually have no idea and we have to ride it out while trying to:
a) Keep him safe and unhurt (he will often start hitting himself in the head)
b) Keep ourselves safe and unhurt (I am a favorite rage target, alas.)
c) Keep the house and furniture from being destroyed (this IS why we can't have nice things, LOL sob)
d) Keep the neighbors from freaking out (we live next door to a sweet, timid three year old who scares easily, and across the street from an anxious elderly lady. And Henry is very very loud.)

...and at the same time we are breaking our hearts and frantically flipping through our mental rolodexes, trying to figure out what could have caused the outbreak or what we can do to calm the storm so that we can help him.  Sometimes we all feel crushed, baffled, alone and in despair. But, poor guy, it is very very hard to have no words.

If you feel up to reading more, two other bloggers have recently posted some great stuff about what it's like to have a child with profound autism:

David Royko

Autism Daddy

Saturday, November 30

Henry and Art

Henry came home from his boarding school the previous Saturday for a full week of Thanksgiving vacation. We started his break off by going to the Astrid Bowlby exhibition and Gallery Talk at Gallery Joe last Saturday night:

It was a packed house



Henry attended his first art opening on his ONE MONTH birthday, and it has just gone on from there, so it's an atmosphere he is comfortable with and also seems to naturally enjoy, at least for short periods of time.

The next day we visited my studio at PAFA:

We looked at my new piece (on the right) hanging in a small group show 

and we also visited the PAFA vending machines...very much appreciated in every way.

 These big boxes that light up, and hum, and show you lots of snacks and then you GET one of the snacks and you can eat it! It is like the most perfect kind of art really, when you think about it...

Not so sure about this one and what it wants from him? :-)

Henry is a catalyst for re-examining preconceived notions of the world, that's for sure. We took in a few more shows:

Hen responded positively to The Artist's Response to Tonalism show

Judging by the number of stims per square inch, I think his favorite was this small piece by Al Gury

And he was as good as gold in the other galleries as well. Another nice thing is that most museum/gallery goers seem to be generally sophisticated/broadminded and savvy people, we rarely get more than a brief glance and a friendly smile when Henry flaps his hands (stims) with excitement, or gives the occasional happy little skip (which can be a surprising move enacted by a six foot five inch young man.)  I guess it is pretty well understood that art-loving comes in all shapes and forms...

Wednesday, November 27


Feeling thankful for friends who rallied to my cry for companionship on a long day of solo Henry-tending! First, Home Depot with Sarah Barr:

Next, we visited a lumber yard with Alex Tyng:

Lastly, a long drive on a rainy night, going nowhere in particular but Mary Walsh to chat with made all
the difference!

All full of gratitude for friends and ready for Thanksgiving!

Saturday, December 22

Bringing Henry Home

"You ARE taking me to that place where I can raid the fridge all day, right?"

Henry was waiting for us when we got to his school house this morning. He grabbed Paul and me each by a hand and headed out the door with us in tow, shoes forgotten. Now home, the air is already filled with the sounds of Barney, and he's polished off a nearly full box of Utz pretzel rods (spirited away while we were not looking.) Vacation time: 6 hours down, 330 to go! (I think I am a little pre-tired this time. :-)

Monday, November 26

Henry at a Party

Henry joins in...
So, Paul and I were invited to an artist friend's party in the city last weekend. My first thought was no, can't do that, Henry will be home. Second thought, might be nice to have a destination for our nightly drives with Henry. We don't have to STAY! Hen actually really enjoys walking around in cities looking at different things, smelling new smells etc. So, even if we lasted only two minutes in Patrick's apartment we could still go for a night walk in Queen Village. 

I checked in with my friend Pat, who confirmed no dogs would be present (Henry has a morbid and overwhelming fear of dogs, yes Jane, even your very sweet old Labrador who wouldn't hurt a fly) and that sure, Henry would be welcome. 

Well, after a certain amount of trepidation and waffling we decided to go for it. And Henry had a great time! So did Paul and I, more unusually.  Henry was pleasantly delighted with the snacks and the music. He'd sit on the various sofas in turn, grinning and stimming and rocking lightly in time to the music. Then he'd get up and amble about quietly looking at things, lights, even sometimes smiling gently into people's faces and standing near them, then ambling off again. He was in party mode! He did quietly polish off a medium sized bowl of potato chips (next time we'll bring a bag of chips with us!) but otherwise was well behaved. That meant Paul and I could relax (to a greater than usual extent) and enjoy ourselves too.

The really nice thing was how cool everyone was. I'd occasionally make a quick Henry explanation to someone I didn't know and people were nice but, blessedly, not overly interested! It was great to not have to trot out the whole Story of Henry six million times, just say a few words and hear in return "Oh yeah, he has autism? Okay, cool." and that was that. I was reminded of how truly accepting of differences many artists are. A relief. Nobody seemed phased or disconcerted in the least.

Anyway, I guess this seems like a long post about not very much, but it was a first, a leap, taking our 18 year old to a non-family unfamiliar-surroundings grown-up party with us.  Only after two hours had passed did we look at our watches and think about moving on, simply because we were tired from a long week on Henry duty. But now I'm thinking, maybe we can try this more. Have six foot five inch boy with autism home on holiday break, will party!  Some times, anyway. (Thanks again Patrick King!)

Monday, May 21

Henry's Senior Service Project!

Henry's 12th grade class at Camphill Special School made a path to the creek for the whole school to enjoy. They really worked hard! Henry is a good man with a wheelbarrow.

Henry and his classroom teacher, the energetic Andreas S! Henry used to be shorter than Andreas not long ago...

Proud moms: my friend Carol L and me.

Bell-ringing during one of the celebratory group songs (not Hen's passion obviously!)

Henry and his good friend Sami!

They are so sweet together! He is really going to miss her next year!

"Little" brother Hugh is almost as tall as big brother Henry!

Henry, so glad and proud! Great work sweetie!

Monday, April 16

Let Us Try

"Let us try what Love will do." ~ William Penn
(from this evening's walk with Henry and Paul.)

Monday, April 9

Henry is Home for Spring Break!

The Henry is in the House!
Henry came home yesterday from his school, for two weeks of Spring Break. Here he has torn Mommy away from the computer and gotten agreement to a late night  car ride...ah the joy! Being driven in the car for hours listening to loud music is his favorite past-time. If only I could get my school work done at the same time!

Sunday, February 26

A Visit to the Cloisters

Some pictures from last week's excursion with Paul and Henry:
Henry loved it, immediately "getting" the reverent mood of the place. He is pretty good in museums generally, and really liked this place especially. 

That's some amazing wood crafting!

The joy of fountains!

"What do you mean the Cafe is closed?"

Great light!

In awe!

Like father like son!
I grew up in the neighborhood of this wonderful museum and it remains one of my favorite places. For more information: http: //

Sunday, August 7

Cheese Sculpture

Turn your back for one minute in this crazy house and people are making art out of whatever comes to hand! In  Henry's case, a purloined hunk of aged, extra-sharp Cheddar. Notice the fine "tooth-mark" detailing characteristic of this artist's technique. ;-)

Wednesday, August 3

Henry is Home!

Henry is home and sporting a summery close-cut hairstyle thanks to the supremely talented Adriano! I keep hearing other Autism Parents lament how their kids resist haircutting but Henry never has done that for some reason! I admit to missing his flowing golden locks when he gets buzzed like this, but Paul likes this look better. Henry doesn't seem to care either way! ;-)

Thursday, April 7

Henry's Spring Break

Henry comes home

As usual, Henry's recent two-week spring break reminded me of Hemingway's words: The world breaks everyone and afterward many are strong in the broken places.  Sometimes while I am squaring up to a six-foot-five 250-pound young man in a rage, I get a sudden objective flash of vision of myself doing this, and I am momentarily shocked at how strong I have learned to be. (Not always though. Sometimes I turn weakly away.)

All in all, this was a nice sojourn with Henry. Overall, his aggressive behaviors seem to be diminishing. What is increasing is his deficit in finding ways to entertain himself. So, there was more driving Mr Henry around than ever before (one activity that soothes and pleases him seemingly endlessly is being driven around. A shame that the gas prices are going up! ;-)

Here are some random photos from his break. We had many happy times:

We also had some dark times:

But we got through these rough patches. What helped was the love and support of friends and family. In no particular order here is a gallery of Henry Helpers and Friends:
Henry's favorite person on earth: Miss Janice!

Wonderful Ynnon brightened our days

Peter was a huge help with his twin brother. Here we are delivering some of my work to the Philadelphia Sketch Club. Peter drove, parked and Henry tended with grace.
Taz and Zai: but Henry is not at all  interested in new babies

Shaking hands with his emergency care coordinator Joel (the guy whose number to call if there is a huge emergency involving hospitals and/or police)
Hen and his neurologist, Dr. McHarg

It's hard to take Henry clothes shopping without help. Thank you Janice!

 One thing people don't hear much about is the occasional intense loneliness of being a special needs parent. You are often cut off from a lot of normal interaction others probably take for granted. So it was a special blessing to have several visits from friends and family over this vacation:
Our dear friends Andy and Diane Strauss

The Downs brothers  Tony and Paul measure up to each other
Friends we rarely get a chance to see Paul and Rose-Helene Spreiregan

My girlfriends were the best support imaginable. Bouquets to all of them:
We visited Sarah on her birthday

There was a lot of driving involved! Mary accompanied me on the night shift



Carol heroically did day AND night shifts

Sarah and her delightful, intrepid children came with us for a long nature walk

We had mixed feelings when it was time to say Goodbye: