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!)

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!

Henry Heroes

We Got By
with a little help from our friends! Henry was home for two weeks of spring break, which is a long time for an autistic kid to be without a schedule. Also, various nuances led me to suspect that I was not going to be receiving any outside help...and unfortunately my intuition was correct! Henry's TSS had car trouble and never appeared, his BCM was only available once for a 60 minute period, and the promising young man I was recommended to for some Henry-sitting did not return my call. I am my own Cassandra sometimes, alas!

So, I turned to my friends and boy did they ever come through! Words cannot express how grateful I am. Here is a photo gallery of Henry's spring break featuring many heroic Henry helpers:


Started off the first week with a trip to a local mall, where Henry has a fun routine of fountain watching, cinnamon sticks eating and carousel riding. My friend Alex T came along with us for that one!


Henry on the carousel. Many thanks to the kind carousel attendant who let me ride for free when Henry refused to let me leave his side!


We visited friend Renee D and had a little conversation and applesauce. Henry was feeling a mite camera shy that day!



Went to the zoo with another Camphill Special School parent, Lainey M, and her daughter Leta. Leta and Henry really liked riding the kiddie train together (about their only moment of shared enjoyment, but better than nothing!)



Visited my friend Katie and "helped" her study for her Taekwondo examination. She passed, due I am sure to Henry's silent coaching. Actually, Katie was a trouper and entertained us TWO times during the break...a purple heart of friendship for Katie!



We had a wonderfully happy and enjoyable visit with old friend Nicole N who recently moved. Nicole and I met when our oldest boys were 4 or 5 months old. We enjoyed seeing her adorable apartment and took a lovely walk in her new neighborhood, with the high spot for gourmandoise Henri being a visit to a superb little cafe for a snack.



Another vacation hit was a visit to the Please Touch Museum as guests of my friend Sarah B. Henry really loved it, especially the huge water world room and the incredibly beautiful and gleaming carousel. I may have to buy our own membership to this place, even though the rest of the kids visiting it seemed to be about 3 to 6 years old! The staff there were wonderful and not at all fazed by my super stretched out little kid (Henry is 16, and 6 foot 4!)



Road trip to Boston! My sister and brother-in-law Carol D and Charlie R warmly welcomed us for a two night stay in bean town. They had an incredibly busy weekend already in motion but generously made room in their lives for our visit. Here they are with Henry at the Arnold Arboretum.



While in Boston we had dinner with old college friends Ned B and Sue S and their handsome trio of sons. Their oldest son Nat has some similar challenges to Henry and those two really seemed to bond over hilarious bowls of ice cream! Who knew ice cream was so mirth-making?!



Sue, Henry and Paul enjoying that after ice-cream rush.



Henry and his brothers and Boston cousins. Smells like teen spirit (I hope!)



Stopped by my brother Jim and his wonderful family in CT on our way home. We got to join in a family cookout to celebrate my nephew N's birthday. This may seem tame to you, but we live far from all family and these little mundane familial events are a big treat for us! My parents live not far from Jim and came too, and it was great to see everyone. Henry observed the elaborate martial arts action displayed by his brother H and cousins but decided he was on the side of whoever would give him more potato chips.



A little brotherly love from twin P.



Home again, we went to the Morris Arboretum with my friend Kim P, who was an admirable lookout during Henry's illicit water-feeling activity!



We had an unexpectedly fun trip to a fabric store with my friend Eliza A. Henry enjoyed walking through the colorful aisles and his joy was complete when we discovered they sold Rice Krispy Treats by the checkout counters! Eliza also stopped by another time during the break and we had tea (with chocolate milk for you know who!)



We ran an errand for my friend Pat F, and we delivered a package to her sister Joan's house. Henry really liked Joan's taste in art, as well as her husband's taste in apple pastries (he made himself right at home!)


Henry and I had a double playdate with Camphill parent Carol L and her sweet daughter Sammi who is Henry's friend from school. We visited their gorgeous home and then went to Longwood Gardens together.



Henry absolutely adored Longwood (may have to get a membership here too.) Watching the Versailles-like fountains and feeding the giant catfish were wonderful. There was some whining (S) and vomiting (H...argh!) but overall, this was a great expedition.



We stopped in for a quick visit with my friend Gretchen W at her doll-making studio. Henry loved this little visit, and obviously felt right at home with Gretch, whom he had never met before (she's just that kind of person!) Somehow he just knew she has pretzels and ginger ale in there!



Also got to drop in and see buddy Mary W who was busy preparing for a fund-raising gala with a Wizard of Oz theme. Hen was not so sure about being in the land of Oz.



Of course, the biggest Henry Hero of all is his father Paul! Paul made sure to come home early as often as possible and take Henry on tandem bike rides (something he adores!), drove him around, encouraged us to visit the shop (always a pleasant little diversion) and did a million other Henry things as well.

A few people, like Fay S and Elisa A, made plans with us that fell through due to weather or other unforeseen issues, and several others made outing suggestions that did not work due to scheduling conflicts, but I am happy they tried. Thanks too to all who could not join us in real time but sent love and encouraging words. For those who gave us the priceless gift of your company, well, thank you a million times! Henry and I simply would not have made it (so happily) through these weeks without your tangible love and support!



♡♡♡...

A Scary New Leaf

After the Seizure
So, it looks like our sweet Henry has begun a new adventure, and is taking us along for the ride! Grand Mal seizures. Actually, the medical profession does not call them that anymore (they are now generalized tonic-clonic seizures) but I like the old name which means "big bad" which is perfectly apt! Henry had his third big bad seizure on New Year's Eve day. This time, despite the ferocious intensity of the whole thing I was fairly calm. 911 was not called, I knew what to do for him: Henry's neurologist had given me the parameters for when I needed to call for help, and when just to deal.

Interestingly, the last two seizures began in the same exact spot in the kitchen (and at around the same time of day!) Making me very very leery of Henry ever even going NEAR this spot again! You should see me shooing him away from it now, as though it was the fault of the location (some supernatural vortex hanging in the air only he can see?) as opposed to what I am sure it really was: random chance. Silly of me, but I confess it still makes me nervous.

The good thing about the last two seizures happening in the kitchen is that I am almost always in there. Both times my "child-in-danger-radar" worked flawlessly. I sensed something amiss and leaped up and grabbed him before he hit the ground. People who have lost control of their musculature are a dead weight and as he now outweighs me and tops me by four inches this is no joke. I have two close autism mom friends who work out rigorously in order to deal with their children, and obviously this is what I now need to start doing, too. Alas for lazy (in body) me! We are all, reluctantly, having to turn over new leaves.

After a big seizure most people are somewhat groggy and disoriented and Henry is no exception. He got up from the floor and staggered right for the stairs to go up to his bed. Actually, this was probably more dangerous than the actual seizure itself as he had very poor balance and wavering muscle control. But he had enough muscle, and enough body mass to resist my trying to get him onto the couch. Bed was what he wanted. I got one of my other sons to help me half-carry him up the steps and get him into the bed. (Here he is in his little safe harbor, resting up.)

If you ever see someone having a seizure here are a few tips:
~gently roll them onto one side if possible (this helps clear the airways)
~put something soft under their head (making sure not to obstruct the airways)
~loosen tight neckwear, if any
~don't try to restrain them, but move any sharp or hard objects away from them if possible.
~call for medical help.

For more information on seizures click the Mayo Clinic seizure page.

Aesthetic Ecstasy

Henry before the throne
of the Third Heaven of the Nations' Millennium General Assembly. Oh, how he loved it! He loved the whole museum (the Smithsonian National Art Museum and National Portrait Gallery) actually, dashing around in high spirits, laughing with excited glee. If the museum director had been there I would think it would have warmed the very cockles of his heart to see such whole-hearted (whole-bodied?) aesthetic enjoyment. Kudos to the Smithsonian museum guards, who seemed to "get" the situation at a glance and were very cool about Henry's unusual museum behavior. Despite some parental anxiety (will he body slam the Edward Hopper in a transport of joy?) watching his delight made me see the work in a new way, myself.

No man remains quite what he was when he recognizes himself.

-- Thomas Mann

The Glitter Hand

Paul recently brought home a bag of shimmering, all-holiday, glitter for some project.

Henry has been enjoying playing with the glitter That body bend, with right hand back behind the head the left hand up near his face is a particular stim of his. It shows he is fully engaged, completely absorbed by whatever he is thinking about or playing with. (One of his doctors once affectionately dubbed it "La Cucaracha"!)

Henry especially likes to pour the glitter onto his left hand...

The Glitter Hand in action!

Okay, now THAT is fun! There's been a whole lot of sweeping going on, as you can imagine. But no problem. Contemplating Henry's delight in this simple activity fills me with a (brief, but deep) sense of peace and joy.

To see a world in a grain of sand,
And a heaven in a wild flower,
Hold infinity in the palm of your hand,
And eternity in an hour.

William Blake - Auguries of Innocence

Aftermath

Recovering from the Seizure
My poor baby. In fact, we are all of us recovering from Henry's latest seizure.

Had not realized how shaky I was feeling till I saw this shot. Straight out of the camera!

Thanksgiving Day Drama!

OH DEAR
Early this morning I was doing a little last-minute cooking prior to driving (several hours) to my brother Jim's house for Thanksgiving. I'd just finished the sweet potato casserole and was starting in on the icing for my sister-in-law's birthday cake WHEN Henry came into the kitchen and started to shake, stumble and fall. Paul and I instantly recognized this as a grand mal seizure (he had one in September) and we were able to catch him before he hit the ground. He turned blue for a moment so I called 911, but as soon as we turned him on his side, cleared his airways his color came back but by then the ambulance etc was on its way. So, lots of big, eye-catching drama on our street this morning!

A few hours were spent in the hospital, and now we are home again and Henry is taking a nap. Apparently seizures really knock the stuffing out of you. They certainly do out of the sufferer's parents...Paul went and took a nap himself. No traveling to family today (they live several states away!) I feel particularly bad about my sister-in-law's birthday cake lusciously sitting on my kitchen counter, far from the birthday girl!




We'd hoped his first seizure, back in September, was a one-off. But now it seems that's not the case. Thinking ahead to all the doctors and specialists we will be seeing, yet again, makes me feel pretty tired myself. Apparently autism goes very often with seizures, and the teen years are a key period when they might manifest. Never a dull moment with Henry! ;-)

Hard Times with Henry

Poor Henry and Poor Us
We have been having lots of trouble with Henry lately. Aggression, rage, anxiety, general misery. It's hard to describe the suddenness and intensity of Henry's rages and mood swings. Paul has been absolutely heroic about coming home from work to help me; particularly stressful for him as he is working like a dog to keep his business afloat. But at age 15, Henry is six foot three and 195 pounds and there is no way I can cope with him for long periods on my own (and I have the bruises to prove it!) Keeping him gainfully occupied (like they do at his wonderful school) is somewhat helpful to his mood stability, but it's difficult for me to devote every second of my day to this as I have two other kids and the usual housewifely duties, not to mention the fact that there is no way I can manage this young man physically by myself in most situations. And it has become impossible to find Henry sitters or helpers...anyone know any former NFL linebackers turned autism aides? We are working to find some drug combo that might help too, but so far no good although there are a few more to try. (That is a torturously slow path, however, as you have to carefully withdraw from one drug before slowly building up with another. And repeat...)

It's amazing to me how there is almost a conspiracy of silence about what seems to be a pretty common phase many autistic teenagers go through (just google: autism teenagers aggression). Good news: it is natural. Bad news: it can last several years. I suppose people don't want to scare other people whose kids are younger, especially as some kids won't go through it. But I have always preferred to know what might be coming at me. So here I am talking about it. :-0 I guess my other motive is to explain to people why I have seemed to have perhaps gone underground, disappeared from the "social scene" and have become worse at than ever at returning phone calls, emails, registration forms etc. We are kind of in lockdown mode over here. I am sore, tired, in a state of constant high alert and busy in way that is simply hard to describe. Here are a few pictures:

















This is when I usually get hurt...when I stop him from smashing himself in the head. Usually it is two-handed, here is the more elegant one hand version. Some kids with autism have to wear special protective headgear as many have deafened and blinded themselves, so I ALWAYS intervene when the self-injurious behaviors begin, and that's often when I become the target of aggression. If you can't smash the one you want, smash the one you're with! ;-)













My poor guy! He doesn't know what's hit him. It's heart-breaking, and we are just hoping we can keep it from becoming bone-breaking, too.