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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A Modest Proposal

Today I read an article in my local *newspaper of record* about the new Sesame Street character, Julia (or is it Julie?), the little girl with autism.  This wasn’t the first time I read about the Sesame Street character but this article spoke of why they chose to have a girl character, why they created her more for autism awareness for NT kids and a few other issues. Now  let me be clear…I am grateful for all the autism awareness on television from Sesame Street to Parenthood to The Big Bang Theory.  I think the characters are interesting, if a bit sanitized for the general public.

But back in the day, when “Rainman” came out, there was a bit of belly aching from some in the Autism Community for lack of realism but I was grateful there was a movie with a character who had autism!  I actually knew the Mom of the person the Rainman character was based and the character’s behavior was based on a real person with autism, so why some criticized the lack of realism I never  understood. There have been other movies since with characters who have autism, again, sanitized and  perhaps a bit romanticized but……again, I’m just happy Our Kids are represented in the cinema.

Anyway, today over my morning coffee, after reading that article, I got to thinking…..instead of having a character with autism on a scripted show, wouldn’t it be more interesting to have real people with autism on a reality series? So here is my proposal:  Make it a cross between “Survivor” and “Big Brother”  and  perhaps a little, “So You Think You Can Dance?” Instead of parents of kids with autism, make the contestants extended family members of people with autism (I’d like to nominate several of my In-Laws), arrogant special educators and para-professionals (nominated by parents of their students), neighbors of families with an autistic family member and those older ladies in Target and Costco who think they  know how you should handle your kid when he has a melt-down in the middle of the store.  And of course, we can’t forget those folks with perfect children who are so precocious you feel inferior just standing next to them.  I’m sure most of you have several people you would happily nominate!

I imagine there should be about 25 contestants to begin with, in a lovely perfect house, with lovely and perfect furnishings…and part of the *goal* of the show would be to keep the house and furnishings lovely and perfect! We would start out with 5 kids, beginning with one or two newly diagnosed (perhaps 2 or 3 years old but a newly dx-ed 10 year old might be interesting),  one or two elementary school age and then a boy (has to be a boy) entering puberty.  The children with autism should cover the spectrum but a *night time howler*, a *feces smearer* and someone non-verbal should be included. It goes without saying they should all be on different diets. As contestants are voted off, a new child with autism will join the house, and each child will be slightly older until there are at least three adults with autism (covering the spectrum) as well as the children.

While the children are at school, the contestants will be expected to clean and cook and if there are any problems at school, they will be expected to drop everything to handle the problem. They will be made to feel guilty if they are not able to fly  right over even if they are in the middle of cooking something needed for a special diet which will be ruined if they leave it.   After school, they will be expected to shop, run errands as well as take the kids to any therapy or extra-curricular activities. All this will be happening while trying to keep up with their own jobs via phone, text or email.

As each new person with autism joins the house, the jargon will change….IEP will stay the same but *Staffing* will become *M-Team* and ASD (Autism Spectrum Disorder) will become plain ol’*autism* etc.  The contestants will not be notified of the changes and will be expected to figure it out contextually.  And as the new autistic people join and are older, contestants will be expected to find adult day programs and the funding for the adult day programs.

Did I mention there will be surprise inspections which will be part of the elimination process? And those Inspectors will be the *voted off* contestants who will feel free to criticize their former colleagues…LOUDLY! I’m not sure what the ultimate prize should be at the end and I’m not sure how I would *pitch* the idea to begin with.

But I do know when someone tells me they understand my situation or can empathize or thinks it’s all Rainbows and Unicorns, I want to tell ’em if they think it’s so easy or they could do a better job, they can take over any day.  The “So You Think You Can Survive Raising a Kid With Autism?” show would be a great outlet for those folks. But it’s not practical…..they wouldn’t last a day!

What do you want to know?

For Hannah

It is evening and I am finishing the dishes. An ordinary weekday night, with no meeting or class or event we must attend. I am going to settle in with a favorite TiVo-ed television show or maybe a book or maybe email a few friends after the dishes are loaded in the dishwasher. Hubby has a game on and it might be nice to join The Kiddo and The Middle Boy and The Youngest and watch it together. The phone rings and all hope for any of that is gone—it’s an “autism” call.

I was a local Autism Society of America chapter president for over six years and took these calls on an almost daily and weekly basis. It was more often when something about autism was in the news. Now, I am retired from the chapter but I still get an occasional call. I feel obligated to at least point the caller in the right direction, whether giving them information about the current support group or an agency or a physician who might be helpful. My phone number is out there, on some outdated website, but I don’t want the caller to be frustrated with a worthless call—I want to help them in some way.

After explaining I am no longer active with ASA as a chapter president, I tell them I still may be able to help them and ask—what do you want to know? The question or concern is addressed and then I explain I am the parent of an adult with autism and they have further questions. One of the reasons I started writing this blog was to answer some of those questions.

Often, they want to know about a school district or a physician and I can help them quickly. Sometimes, they want to know where to get help for a grandchild or a niece or nephew or are moving and want to know the best place to live in our area. They want affirmation of what they are doing—I try not to judge but do try to be honest. They want to know how to handle a school district or what recourse they have if they are not happy with a teacher or treatment. I try to be honest and try to be calm. And I try to be supportive. Sometimes, they just want someone to listen to them.

Many want to know how Hubby and I have stayed married when the divorce rate for couples with a child with autism is so high. Its luck, I think, and how we look at The Kiddo in the grand scheme of our family. We are all on the “Kiddo Team” not on the Hubby or Me team and we do not blame each other. Blame can swirl around us and our family but we do not blame each other and are united. We respect each other after a long time of dealing with autism and feel much the same way about a lot of things. We work through the problems together and that has also brought us closer. We go out together regularly and when our kids were really young, had a “date night” with movies and popcorn or music on our stereo. We try to be a couple and not just Kiddo’s and Middle Boy’s and Youngest’s parents. Make time for each other because if you don’t, there won’t be time.

Others want to know about our other kids and how they are doing. Both The Middle Boy and The Youngest have Masters Degrees at this point, with more education probably to follow. They both have had their own issues and we worked through them just as vigorously as we did for The Kiddo. They are kind, responsible young men and are more mature and understanding than many of their peers by having a sibling with a disability. Are they resentful of all the time and energy we had to spend on The Kiddo’s and not on them—maybe. But during The Kiddo’s  illness a few years ago, they both spent time in the hospital with him and helped us talk through the treatment we should use. We came together as a family and it’s obvious they love him unconditionally. So I think I can answer this way—they are doing well for the most part.

Some want to know if I have any life outside of autism and I tell them I have always worked around my own career and I do what I can to stay involved in my profession for my own sanity. I’ve worked at least part time since The Kiddo was born. At various times, I have worked full time or had three part time jobs or been in graduate school and have worked in Hubby’s office as well. Now, I tutor NT kids, teach an arts specialty class of adults, speak about art and autism and am a moderator for my professional society’s website. I have been supportive of  those in the arts with developmental disabilities and have been helpful, through my professional organization, to facilitate dialogue between both of my worlds. I take the occasional class as well to keep my own “chops” current. It is a matter of stepping away from autism so I can be fresh and not resentful, myself, rather than any selfishness on my part. How can I be there for The Kiddo if I am soul-sick and needy? My art and years in the arts are part of me and I cannot give them up, even for My Kiddo.

I am not as involved in autism advocacy as I have been in the past simply because I don’t have time. I choose to do what makes me happy now and where my talents lie, whether helping a choir of disabled adults from New Jersey when they visit our state or telling others about our life with The Kiddo. We have always tried to put a face on autism to help others understand and this has become my passion.

The parents who call me by mistake also want to know—does it get easier and the answer is “yes.” You have to be willing to do everything you can for your child and then be at peace you DID EVERYTHING you could, no matter what others say to you. No guilt for whatever happens because, despite what some may tell you, you really can’t control the outcome. Most all children with autism get easier to live with and work with and some may even have some degree of independence, but some do not. You have to be okay with that and know it may be a possibility.

We are still here, still fighting for our son and others like him. We have more time in our lives for things other than autism and get more sleep and are able to be a bit freer so we are a “success” in that regard. And I hope that gives people hope. But we will always live in the autism world.

So, what do you want to know?

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.

You Are a GREAT Parent!

One of my Nephews is having a kinda FB war with one of my kids.  He decided to taunt my kid with “my Mom is better than your Mom” crap and my kid wasn’t buying it.  My kid responded with “it’s easy to be a so-called *great parent* when all your kids are normal.  When you have a kid with autism, it’s a whole other thing.”  The Nephew responded with, “you people always bring up autism. I bet it’s not that big of deal except for you losers.”  Now the cousins aren’t speaking–too bad but to be expected.

My son is right–anyone can look like a great parent (from the outside) when there are no challenges.  If your kids hit all those milestones when they should, lucky you.  But you haven’t begun to be a *great* parent because–you don’t have to be.

How can you consider yourself *great* when you haven’t had to tote your kid (and his brothers) to a therapist’s office three times a week and still try and get a decent meal on the table within minutes of arriving at home? And what about the Team of Professionals it takes to coordinate your kid’s education–ever try to get five of them in a room at the same time when it’s not IEP season?  Toilet training?  It’s *fun* to get it done when he’s two or three years old  but when you’ve spent time EVERY DAY until he’s six or seven working at it so he can be toilet trained, it takes a certain kind of determination that makes a parent not just *great* but bordering on Sainthood.  I know you like “organic” and “whole foods” and “gluten-free” and use other food buzz words that make me laugh, but when foods you choose for your kid can make his autism worse or just getting the kid to TAKE. A. BITE. requires the planning of a four-star general, any preferences you may have for your perfect children and their diets makes me want to throw up a little in my mouth. How can you be considered to be a great parent when the biggest challenge you’ve had with your children is them not making Varsity on the first try?

Parenting is not for wimps but Special Needs Parents are a special breed of strong-armed, strong-stomached, strong-willed Warriors who try every day to do the best they can for their kids—ALL OF THEM—and second-guess themselves at every turn.  They take no time for themselves, or very little, and feel guilty for anything they do not related to their kids. When no one notices their sacrifices, it’s fine, until someone makes a crack, like Nephew did.  And then all bets are off.

Anyone can parent someone without problems; it’s only when there are problems you see what kind of parent they are—and what kind of person they are as well. Special needs parents are GREAT PARENTS! We’ve had to be because there is no other way to parent someone with challenges.