Freaking Out in Autism-Land

This has been the busiest ten days of the year for me.  A week ago, my class presented their final projects for the semester and this past Saturday night, I gave a semi-important lecture for a local arts organization (in a blizzard here in the Midwest…..a blog post for another time).  I’ve been working toward my class’s projects (and showing them) since August.  I’ve been working on my lecture notes (and all the fancy Power Point pix for the lecture) since I was hired in mid-August.  But there are always last minute additions and when you practice the lecture text aloud, often you have to change them, right? After my class was finished,  I had Monday and Tuesday to grade the projects and submit grades to the most complicated grade submission program on the planet. I figured I had all of Wednesday to finish the lecture and edit the pix. So I could, ya know, take a breath and relax before I had to pump up my adrenaline for the lecture on Saturday.

Wouldn’t you know there would be Autism Issues…it was totally predictable….in the midst of it all? Now, I have to admit, this was not the Kiddo’s fault AT ALL, it was mine.  But because of his Autism and the OCD component of his Autism, I had to haul my Tuckus into gear to make all right with his world…..Autism-Land….or there would be hell to pay.

On Wednesday morning, I had the bright idea to water all my somewhat neglected house plants. I’ve been busy and just didn’t have time to do my usual plant grooming but, I thought, why not just water ’em and pluck off the dried up leaves? So, Kiddo was at his day program and I watered plants.  Just before he was supposed to arrive home, I decided to go upstairs to my room and water those plants. I  watered my bedroom plants and then tried to close (and lock) my bedroom door…….but it was stuck and I slammed it shut……big mistake!

Some of you might remember I’ve mentioned Kiddo has a collection of about 15 musical snow globes.  We had special shelves built on the wall in his room about ten years ago….and they’ve worked great…up until now.   When I slammed the door (his room is next to ours), four of the globes FELL OFF THE SHELVES AND SHATTERED ALL OVER THE RUG, BROKE TWO OF HIS LAVA LAMPS AND RUINED HIS TV!  As I realized what had just happened, I heard his bus, so I closed his bedroom door and got downstairs to meet it.  He, of course, wanted to take his backpack up to his room and hang it up on his closet door, as always.  But Kiddo hates disruption in his room; I even have to make sure the door is shut when I change his bed linens or he has a hissy fit. I grabbed the backpack, told him to have a clementine (his absolute favorite snack) and ran upstairs to further access the damage.

I can’t even begin to tell you the damage.  The rug was gross and stained…..and there was glitter (or something) all over because these were, you know, snow globes. Something smelled foul and I realized his collection of Troll dolls, right underneath the shelves with the globes, were soaked with whatever rancid water was in the broken globes.  Right around this time, The Youngest came home to check something on his laptop before going back to teach. I asked him to help me move the TV shelf but he told me he didn’t have time to change…..and this would be messy!  So I told him to turn the family room TV to PBS and their children’s programming…..as he and I were talking in the kitchen, The Kiddo went up to his room behind our backs, opened the door……and began screaming….bloodcurdling screams and wouldn’t go in.  The Youngest and I got him downstairs, I made him a multi-course lunch and encouraged him to eat it in front of the TV (we never, ever do that…but needs, must). The Youngest had to go back to work so it took me about 30 minutes to get The Kiddo to calm down.  I decided I had to get ‘er done and not let him see anything until the Clean Up was finished. SIGH!

It took me almost eight hours to clean up the Flippin’ mess, from the time I slammed that lousy door to being able to let him back in.  I picked glass shards out of the carpet with my bare hands.  We tried to move the TV (and took all the books off of the shelf ) and the shelf fell apart. So, The Middle Boy and Hubby went out to Target and got him a new shelf and TV (an LED which is certainly safer than his old tube TV), and I was on my hands and knees cleaning the carpet with my carpet spot cleaner.  I threw the Trolls into the washer (and they came out great, who knew?) and rearranged the books and VHS tapes (he’s learned to use them …….we’ve tried getting him a DVD player….our Kiddo is an old school-technology guy) and put those damn snow globes on a very, very, VERY sturdy shelf on top of another book shelf. The room looks great, the new TV is safer for him and the carpet looks better than it has since the last time we had the carpets cleaned.  Hubby hooked up the new TV to the video/DVD player and things are organized better for him. The Kiddo sauntered into his new and improved room with a big smile on his face.  All was right in Autism-Land. GGGGGGRRRRRR!

We all agree this was a good thing, in the long run. Why the universe conspired to choose the one day I had to do my own stuff to make it happen, I’ll never know.  I was so tired, my eyelids hurt and I sobbed when I went to bed.

In case you were wondering,  I finished the lecture on Thursday afternoon. It went great but I never did get my *relaxing* time as I had wanted. ‘Cause why should anything be different….I’m living in Autism-Land!

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The Holidays are Coming

When I began this Blog, my thought was to share some ideas and perhaps a solution or two from my experience as a Long Time Autism Parent. Since it’s right before Halloween, I’d like to share some of my thoughts about holidays.

Ask anyone with a disabled child, and they will tell you the most difficult time of year is fall. School begins and the holidays approach, commercials bombard us with pictures of the “ideal” family and what we should be doing, buying, feeling, etc. Our “normal” extended family reinforces the idea we will never experience and feel what we should. Our worship community may or may not include us in the celebrations. We’re lucky if they do and if they don’t, we may be lucky anyway.

Schedules are different, food is different and we, as parents, are different in our stress level. Perhaps, we have things under control during the regular year but as soon as the first pumpkin appears in the stores, things go to heck in a hand basket. Grandma insists one little cookie won’t wreck the diet that seems to be helping. The school district takes every holiday–known and unknown–and wrings every day off it can, disrupting the rhythm of the days and the change back to Standard Time doesn’t help either. We may be trying to figure out how to afford the therapist AND Santa this year. As soon as Halloween is over, our neuro-typical kids rev up the “gimme machine”, which doesn’t re-enforce their disabled sibling’s behavior program. None of these things help matters with our kids in day to day living. And we must live in the day-to-day, in addition to getting ready for the holidays.

Our Kiddo is in his 30s and our holidays have evolved into a time we love and look forward to, but that was not always the case.  If I had known then what I know now, things would have been different.

One good thing for us has been the “social story” way of managing holidays with someone with autism. For years, I explained what was happening to Our Kiddo as the seasons changed, using pictures, story books and decorations to do so. I have long had–because of my profession as an arts educator–a collection of decorations for every holiday and decorate our whole house. For the last several years, I have put up our decorations, without some of the stories and he has done just fine, acting appropriately for each holiday situation. Seeing the silk wreath of brightly colored autumn leaves means ‘turkey” to him and the familiar jingle bell wreath for his bedroom door means “Christmas” just as hearing carols does for someone else.

Music was important to us at holiday time and we began to seriously collect Christmas music the weekend Our Middle Boy was born. To keep my mind off being in labor, we browsed at a record store and found a Swingle Singers Christmas album. We brought the album home with the baby and the Kiddo settled down and rocked to the music—it was like magic! Our holiday collection of albums and CDs grew and grew and grew. We add to the collection every year and look for unusual things all will enjoy or giggle about.

We celebrate our own holidays with our boys in addition to the extended family events. It was important to us to give our sons a sense of our own family, and having our own holiday traditions helped. Such as, if we are not hosting Thanksgiving, we have “faux” Thanksgiving and we may or may not have turkey. It may be before Thanksgiving or right after.

Many parents struggle with gifts for our kids with autism–what to do, to buy or to suggest. Some are unhappy when Grandma gives what she thinks our children should have instead of what we suggest. I, too, have long struggled but have come to grips with some strategies for looking at the folks giving him gifts. I was delighted when one of Our Kiddo’s uncles gave him a huge tin of gummy bears–something he LOVES. His Uncle F was thinking about what he would like. When Grandpa gave him yet another cashmere sweater, eventho I have told him over and over he is tactile defensive, only wears acrylic sweaters, not to mention he is a slob and needs something that can be washed regularly, I didn’t think about the actual usefulness of the gift. I thought about Grandpa giving him the same gift as all his siblings and cousins, trying to treat him the same way because he is his grandchild as well and that touched me. One of his Grandmas gets toys appropriate for three year olds and I am fine with that. Another Uncle got him a Lava lamp one Christmas and a disco-ball the next–Our Kiddo’s room is groovy! Of all the gifts, my favorites have been from his Auntie C–musical water globes–and he displays them proudly in his room. Even if the clothes can’t be worn, or the toys are not what he likes, I am fine with it because they have thought about him. For so many years, the extended family has not bothered with him because he is difficult or they have to think outside the comfortable box they are used to getting gifts–shopping for him is work. Some still behave that way, thinking no one will blame them for the glaring oversight. But, to ignore Our Kiddo, is to ignore a family member at the time of year we hold the concept of “family” in high regard. I still struggle with this, after so many years because he is my son, he is worthy of note and IS part of the larger family.

Speaking of Santa, all of us have had to come to the conclusion the Mall Santa will not always work for our kids. Our ASA chapter used to hold a holiday party every year and a chapter dad would dress up so we could finally have those Santa pictures. It was wonderful and HE was wonderful and had the patience of Job. Our other kids knew who it was and we have wonderful pictures of them with “Santa”, some very silly, but very much a part of our holiday traditions. We laugh about those parties, filled with pizza and cookies and Santa bringing gifts we brought. It was so much fun and so normal to have a holiday party with Santa.

Many parents have their ASD kids on highly structured diets. It is a real power struggle to have others accept the idea of the diet, whether one is cutting out dairy or wheat or limiting sugar. When others host holiday meals, that’s when the trouble begins. You can ask for the variations, bring the food yourself or feed the kids before you come. In any case, someone will be upset. We have to do what is best for our situation, that particular year. Some years, throwing the diet out the window may be the answer and others, coming after dessert for the gift opening only may work. I can only tell you we’ve done all of the above and then some–I don’t have the answers for what is best myself.

We still use the New Years holiday to center our family, spending it much the way The Hubby and I did when the boys were young. We couldn’t get a sitter for New Year’s Eve one year and spent the evening playing board games and talking about each child, our wishes and hopes for each and plans for the coming year. We started out trying to make a special time from an unfortunate situation and it evolved to include a wonderful dinner, games, movies and everyone enjoys it. The Boys play games with us (sometimes bringing their Significant Others), Our Kiddo watches the Marx Brothers or Fred and Ginger with us and we have a good time, together. It was, and is, the only holiday, all year long, that is truly our family’s holiday. Even if we have plans for New Year’s Eve itself, we try to have “our” time set aside sometime within those few days for this tradition. This has been a way of holding our family together when all sorts of outside factions seem to rip it apart.

Don’t Hate Me!

Now, hold on……what I am going to say may cause you to hate me. And truly, you may think I am bragging, but I swear I’m not.  And you may THINK this is a great thing but……well, alright, I’ll just say it…….I have a CLEANING LADY!  Whew, glad I got that out.

Now the reason I have a Cleaning Lady may cause the romantics out there to tear up a bit and trust me, it is romantic in a way, but actually having someone come in and clean the house in a household with an autistic adult family member ain’t no great thing!

Hubby and I have been together for 37 years and married for 36. For our 25th wedding anniversary, we decided to have a huge party at our house (really, in the back yard) because the following week we were hosting my parent’s 50th wedding anniversary party at their favorite restaurant. Each couple wanted their own celebration, so we agreed and sorted this out a YEAR before, with dates and venues chosen.  The invitations were sent out and……I FREAKED!  And the reason I freaked out was because my house…..my WHOLE house…..was never all clean at the same time. As I tried to calm my mind down long enough to decide where to start cleaning (and to get Kiddo out of the house long enough so I could do it), Hubby asked me what I wanted for an anniversary present.  I said flippantly, ” I want to have someone come in and clean the damn house,” so he arranged for us to have a cleaning lady come in every four weeks….and she and her crew are STILL coming! Told ya it was romantic 🙂

But it isn’t that great, folks, because I can’t *just* relax and have her come in.  My Kiddo hates change.  Usually, our schedules are such The Kiddo is not at the day program when they come so I have to strip his bed with the bedroom door closed and sneak his clean sheets out of the linen closet…I feel like I’m doing something scandalous!  When we first had Juana come, we would prep the Kiddo by telling him Juana and the girls were coming and bribe him  with chicken nuggets from Wendy’s (those are the big guns, folks).  We told him he needed to be good so he could have Wendy’s after they left. And 50% of the time he was the smiling, perfect gentleman and 50% of the time, he was a jerk!  One month, I forgot to do my cleaning lady Social Story with him and….he was perfect!  I started NOT doing the prep work with him and he did better than fine…..we wonder if knowing they were coming was worse than just having them come…..maybe the anticipation of change was more difficult than the actual change.

In any event, there are some months I think the whole thing isn’t worth it but….I like a clean house.  So does The Kiddo.  And isn’t a cleaning lady better than a pair of silver candle sticks for your 25th anniversary?