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… 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!


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.

Gallows Humor and Chuck Norris Jokes

The older The Kiddo gets, the more I laugh……. laugh at our crazy life…..laugh at his autism-y quirks….laugh at all the stuff, if someone else was telling me, I wouldn’t believe but if an Autism parent was, I would.  Let’s face it, folks, some parts of our life are hilarious! Well, maybe not totally hilarious but darn funny….a day later and after the fact……..the next year and after you’ve moved…….or after the carpet is cleaned. Poop stories are especially funny a decade or so later.

A friend of mine told me she had a wonderful nursery for her two sons.  The eldest *Joel,* is NT and she had such a great time picking out great furniture for his baby’s room…..a beautiful set of changing table, rocker and crib, all a beautiful, sturdy white wicker. It was such a lovely cocoon of calm…..the baby’s room was her favorite room in the house. When *Jonah* came along (with autism), she regretted that damn wicker furniture every single day because he was a smear-er….a feces smear-er….and she couldn’t keep it clean. She finally gave up, went to Wal-mart and bought the cheapest and easiest to keep clean crib she could find. She pitched the wicker set….no one would want it anyway! *Sophie* and I couldn’t stop laughing when she told me about the wicker crib….. her story about questioning a Wal-mart employee about the durability of the finish when using Lysol caused me to laugh so hard, I hiccuped!

When my boys were in Junior High and High School, Chuck Norris jokes were popular.  If you’ve never heard of them, here are a few for your enjoyment (and the reason for me telling them will be apparent in a bit):

There used to be a street named after Chuck Norris, but it was changed because nobody crosses Chuck Norris and lives.

Fear of spiders is arachnophobia, fear of tight spaces is claustrophobia, fear of Chuck Norris is called Logic.

Chuck Norris and Superman once fought each other on a bet. The loser had to start wearing his underwear on the outside of his pants.

When the Boogeyman goes to sleep every night, he checks his closet for Chuck Norris.

Chuck Norris doesn’t wear a watch. HE decides what time it is.

Chuck Norris doesn’t read books. He stares them down until he gets the information he wants.

My Kiddo, like many people with autism, has OCD issues.  And also, like many people with autism, it appears he isn’t paying attention to his surroundings but he is, and don’t you forget it.

I’ve mentioned in a previous Blog we re-did our kitchen a little over ten years ago and decided to resurface our cabinets instead of gutting the whole thing, mainly because we didn’t think he (WE) could handle two or more months of upheaval. The cabinets and floor plan are essentially the same as before. It was a mistake to do that because he………wants things the way they were ten years ago.  I have beautiful solid surface counters but need to have heat resistant pads on the counters near the stove and oven when I cook so it doesn’t crack if I accidentally put something on them….and Kiddo moves them….when I’m in the middle of cooking…… soon as I leave the room……answer the door or the phone…….check my email….change a load of laundry….or in the middle of the night. The Kiddo wants things a certain way in our home.  He is willing to wait for minutes, hours or even DAYS to change things in the kitchen or living or family room back to the way HE thinks they should be. This where the Chuck Norris jokes come in……Chuck Norris doesn’t sleep, he waits…..and that’s Our Kiddo……when he sees something he wants to move back to the way he thinks it should be…..Kiddo doesn’t sleep, he waits!

One Violet at a Time

Come into my kitchen and pull up a chair. I’ll pour you a beverage…what would you prefer? Coffee or tea?  Decaf or herbal?  Soda?  Oops, sorry then, no soda! I do have some adult beverages; what would you like………wine or beer? There’s always water……I have both Still and Carbonated.

Now that we’re settled, let’s talk.  You wanna know about my kitchen?  My KITCHEN? I suppose there’s no harm and really, my Life in Autism can be explained a bit more clearly if you understand my kitchen.

The kitchen is the heartbeat of our home and of our family. It’s the same for any family, really, even those not affected in any way by autism. The kitchen for the family with a member who has autism can be both the best room in the house and the worst room in the house.

It’s the worst room in the house, especially if early on there are food issues (and their corollary: food fights) or, you are in the midst of the Autism Diet Wars.  We tried anything, food-wise, that tempted Our Kiddo and would have some sort of nutritional value because as a three year old, he ate like a 15 year old. Chicken nuggets, fish sticks, pizza, chips and grilled cheese…..and not a drop of green to go with those french fries!  He wouldn’t eat a salad but he would eat corn on the cob and carrots until he was orange. We congratulated ourselves when he ate chicken gumbo soup after we sneaked in some pureed green beans–YEAH US! Trying all of those damn Autism Diets left us weary and not worrying about what he ate anymore because, when every meal becomes a battle ground, just tain’t worth it!  We did find a helpful diet for him, but it wasn’t until his mid-20s and that’s a story for another time.

It’s also the worst room if your Autism Kiddo has OCD issues like my son.  We call it the *Kiddo Feng Shui* but it’s really maddening to have him move stuff simply because he wants straight lines to line up or objects to touch.  He’s been known to unload a dishwasher full of dirty dishes and put them away (P.S. Those *child-proof* locks for dishwashers don’t work…don’t waste your money).  He’ll use a bowl and spoon for his breakfast oatmeal and put them back in the cabinet and flatware drawer(eewww). Don’t worry, we’re a lot more on top of the dish situation than we used to be, so your glass is perfectly clean. For a while, he would open cabinets when I wasn’t around, pull the glasses or mugs or dishes to the very edge of the cabinet so that when you opened them,  you had to watch for falling pfaltzgraff! If there is something he likes, such as orange juice or cookies or soda pop(don’t start), he’ll drink or eat it all, so we have pantry shelves and a second refrigerator in the garage. We’re lucky he’s afraid of the garage or there never would be any Cheerios!

It’s the best room in the house because our family has shared a lot in that room.  We eat dinner together (once again, like old times) at least five days a week and it’s nice to be with each other.  When they were in grade school, often all my Kiddos did their homework at the kitchen table eventho they had nice bedrooms and nice desks and we have a nice study. My Kiddo still does the academics program I have created for him almost every day at that kitchen table.  Four of us drag out our laptops and work at the table occasionally but it’s usually the dead of winter when that happens for some reason!

My kitchen is warm and welcoming and makes me feel good, even when things don’t always go the way I want them to. It’s also the best room in the house because of the way it’s decorated.  We re-did it about ten year ago, resurfacing the cabinets, getting new appliances, painting and getting new counter-tops.  We contrived a clever way to display the hundreds of pieces of depression-ware my Grammie D left me. But instead of getting the greenhouse window I wanted and desired, we put brass brackets on either side of the windows above the sink and put glass shelves across the windows as a compromise.  Hubby and I bickered and bickered and bickered…..I wanted the top of the line, very expensive counter-tops…and I did get them only to *lose* my greenhouse window battle with the Great Hubby!

I had wanted to have herbs and mini-roses or something like that on those glass shelves and still, after ten years, it hasn’t worked out. The mini-roses just don’t do well in that window and I have *officially* given up. The herbs, well, the herbs would do well if My Dearest, Eldest, Most Excellent Kiddo would leave them the heck alone!  Basil is eaten, mint is chewed, rosemary is stripped of its leaves and left looking like a stick tree and sage is thrown away in ripped strips. For whatever reason, Kiddo doesn’t like herbs there.  Since I fought for this compromise, I needed to have some sort of plant life sitting on those darn glass shelves and I do….African Violets.

My Grammie D was the first disabled person I knew. Of course, since she was my Grandmother, I didn’t realize she was disabled until high school. She was an amputee, having had a birth injury which caused her leg to be crushed, and her leg being amputated at the age of nine was the best solution for her to have a near *normal* life.  She earned a college degree in the early 1920s when women often didn’t finish high school. She had a career, played tennis, married and had two children (one was my mother)and then had another career during the depression when her husband lost his job.

Grammie D knew all of my children, passing away when she was almost 96.  She loved them so much and was so proud of her great-grandsons. She gave me some good advice when it came to The Kiddo I think.  She told me to always expect much of him and he was more capable than any of us realized. And not to sell him short and be patient.

Grammie loved African Violets and when I tried to think of something to put on those damn shelves, those shy little flowers came to mind.  And, knowing Our Kiddo takes a while to get used to things, I put one Violet on the shelves at a time. For seven weeks.  I now have seven, beautiful, healthy (mostly) African Violets that he leaves alone. Progress!

Sometimes, living with autism, we have to be patient. It’s often a matter of one violet at a time.

Guilt Go Away!

I am the Mom of a young man in his 30s who has autism and is lower functioning. We’ve fought the good fight, we’ve done everything and anything we can to help him but…he still has autism. My husband and I and our other sons are at peace with his autism because to accept The Kiddo, autism and all, is to love him. Please understand; we are not happy he has autism and our lives are not AT ALL as we had planned. But this is our life, so we accept and move on and take joy and happiness where and when we can get it.

It’s actually freeing to accept our Kiddo and his autism. Yet others in our lives can’t seem to leave well enough alone and *pick* at us. It is those on the periphery of our lives, the In-Laws, the extended family whom we almost never see, and those with the *perfect* children, who seem determined to upset our carefully filled applecart with their supposed *good* intentions. They wonder aloud, in front of us, if they should invite him to his cousin’s wedding. They brag about their children or grandchildren and are bored by our autism stories, telling us they are so tired of hearing about the Kiddo and his darn autism. They *forget* to have enough chairs for him to sit at table for a holiday meal, telling us they didn’t realize we would bring him. They banter the *R* word about within our hearing, never realizing it is not only insulting to us, but to Our Kiddo. They chastise and lecture and tell me if I really wanted to, I would be able to attend a bridal shower or concert or picnic or some other event no matter I was not able to find a respite worker to cover. They offer up yet another autism therapy they’ve recently heard about (and we’ve tried ten years ago) inferring we are failures as parents because we’ve given up hope since we’re not jumping on it THIS MINUTE.

Do I feel like a failure? Nope! What I do feel is guilty. You think you know why, but you are wrong. I do not feel guilty for anything I’ve done or have not done for my son. I do not feel guilty for taking time for myself or for my marriage or for our other sons or for my own career. I do not feel guilty for not being able to do extra things for family members or for not taking trips we’ve been badgered about. I do not feel guilty for not attending events the Kiddo hasn’t been invited to because he has autism and the extended family is uncomfortable, even after 30 years! I do not feel guilty because I’ve stopped calling or emailing any news about Our Kiddo and his brothers to those who feel the need to interrogate me or question my motives. I do not feel guilty for loving The Kiddo or for accepting his autism or for being proud of him for accomplishing things others may find insignificant. And I do not feel any guilt, whatsoever, for remaining close to those in our network of family and friends who have been supportive and kind to us in our now three decades long autism journey.

What I do feel guilty about is not telling those perfect and condescending people in our lives to take a flying leap. I should have done it when I wanted to long ago but stopped myself because I didn’t want to seem petty. But the only person trying not to be petty is me. I thought, over time, they would change or understand or want to understand, but that bunch has no desire. Understanding requires a bit less selfishness and a bit more kindness and compassion for others. I thought they would see our struggles and give us a break. I thought they would include us, all of us, in family events and holidays. I thought they would admire us, not belittle us, for putting our autistic son and his brothers’ needs ahead of theirs. I thought they would eventually see I wasn’t a terrible, neglectful mother but just a Mom trying to do the best for her autistic son. I thought they would eventually love The Kiddo and see what a good person he is, despite having autism and love him as much as we do. Hah, was I wrong!

I’ve wasted enough time and energy feeling guilty and sad about Our Kiddo’s autism, defending our family’s choices and my character. I’m moving on, letting go of the guilt and being happy. And I will happily tell anyone where to go who feels the need to make ME feel guilty about anything.

Trying to Keep Up

Since I decided to begin this Blog, I have made five Blog entries (including this one) in the last fives days.  I won’t be able to keep this rate up……sorry……..because………drum roll please…………I have a life!

What am I talking about? Am I being snarky? Back in the day, during those first Dark Days of Autism and  my perception of what it would mean to me, Hubby and the Three Kiddos, I never imagined being able to do anything but be an Autism Mom.  I didn’t imagine I’d be able to return to my profession, have a regular trip to the hair salon, have lunch with the girls, go out to dinner with the whole family (much less on a vacation) or feel like an intelligent human being who could speak of  things other than autism treatments and why I liked them, or don’t like them.

I learned early on to pace myself, autism-wise, or I would fall part.  That’s part of the trick of autism parenting, no matter what you believe right now or what anyone else tells you; parenting a child with autism is like running a marathon and NOT like running a sprint. You can’t do everything you think might help; just do the things that make sense to you, you are able to do and you can afford.  There’s a sense of urgency we are all made to feel by relatives and school personnel and, if we’re to be honest, by other autism parents. We have to do what’s right for us, for our child and family and not what others tell us is right. When we begin to *grow-up* as an Autism Mom or Dad and not listen to peer pressure, that’s when things get easier and we no longer feels as panicky.

In order to be a good Mom to Sonnyboy # One (and #Two and #Three), I had to get away from autism and from all of them. I started out by asking my Hubby to watch the kids once a week so I could go to the grocery store by myself.  It was usually a Wednesday or Thursday evening after dinner.  For sixty to ninety minutes, once a week, I could gather my thoughts in quiet and think without interruption…bliss!  That helped my mental health and it got easier for me to do what I needed to do….therapy-wise and advocating for Sonnyboy #1  with the school district, dealing with #2 and #3 and their giftedness (whole ‘nother set of problems and not as fun as you would think), and just plan ol’ autism work!

As Sonnyboy #1 grew and got easier to work with (and live with) and his school district and I came to (finally!) a meeting of the minds, that meant I could go back to school.  And I did.

Next week, I’ll go back to my teaching and consulting.  I also work for my professional society’s website and write a weekly article for their HomePage and that begins next week too.  I had lunch with friends a few weeks ago. We just came back from a lovely vacation in the Northwoods at our usual cabin and had dinner out more times than I remember. My haircut and roots touch up is scheduled for Friday. All those things I thought I’d never be able to do, I am doing, and maybe taking a little for granted. This *normal-ish life* took years to achieve and we are grateful for it.

I hope to post here about one a week, or once every other week when things get hectic and will be thinking of you when I am not around. In the meantime; just keep doing what you’re doing, do what’s right for your kids and love them as much as you are able, even when they are not so lovable. You’ll be able to have a *normal-ish life* too, sooner than you may think!