Ladies Who Lunch

In Loving Memory of JeriLynn

To the casual observer that afternoon, we were just another table of ladies of a certain age catching up.  Possibly old friends from PTA or Little League or Band Moms or any of a number of activities our kids could have participated in together in their school days.  Caryn* and I were the first to arrive, both of us being close to the chic-chic place Jeri had chosen for lunch.  Judy ran in, thinking she was late, with Jeri right behind, and Frannie was late because Frannie was always late.

We hadn’t seen each other for a few years and had much to talk about.  If you had been eavesdropping at this point; you would have had your first opinions confirmed.  Our jobs and our husbands—or ex-husbands—and our kids were topics of conversation as well as what to order for lunch. Salads with dressing on the side, coffee or iced tea and possibly blowing the Weight Watchers points with a real entrée were the topics we began with that afternoon. We are typical of ladies of our age in many ways and our conversation showed it.  We were loud; we were silly, we were happy to be together after years being apart.

The five of us are interesting gals—we always were.  One was a postmaster, another head librarian for a town, one taught foreign languages and another taught children with learning disabilities.  I was the music/arts educator of the group. All of us worked at least part time while our kids were growing up and had some help—or no help—from our kids’ fathers.  Our hubbies were scientists and physicians and English teachers and construction workers.  The ex-husband wasn’t worth mentioning but the grandparents who helped out were! Caryn had one child but the rest of us had two or three—all boys.  And we each had one son who had autism, all very close in age.

Jeri and Frannie started our autism support group in 1986 when there was none–and I mean NONE—in the area.  Breaking new ground, they started something from nothing at a time when autism was a rarely mentioned and certainly did not seem to be as prevalent as it is now.  They met each other at the early intervention/pre-school program their sons, Joshie* and Pete, attended together. They had a need to compare school districts and treatments as well as have some sort of support system. And it was great to talk to someone who really understood the rather bizarre world of autism!  It was a good idea and the little support group soon became part of our state’s society.  Judy and Caryn had been early board members.  I joined the group a few years later, became a board member a few years after that and president a few years after that.

Unlike days past, we didn’t have an agenda for this lunch.  I remember a lunch we had on a Saturday afternoon which took an Act of Congress to pull off and schedule.  During those times, there were coffee meetings and phone meetings and meetings before and after our meetings.  We planned conference topics and fund raisers and talked about our state society’s politics. We plotted who could go to the national meeting or the state meeting or if it made sense to take our families that year and get rooms near the pool.  Some years we did and some years we didn’t but we talked about it! We could never just enjoy each other and relax.

It was Jeri’s idea to get together this time.  She was determined we see each other. We tried before, during the school year, and decided with several of us teaching or working with kids, it was a lost cause.  That was why we were together on a beautiful summer afternoon, having lunch and catching up. It was nice, very nice, to catch up because, just as happened when our sons were younger, we had many things to talk about no one else could understand.

Those of us with other sons spoke of them.  Several boys were still resentful of their brothers needs despite the Sib Shops we so careful researched and took them to.  Most had their own lives, occasionally coming home from college, being swept up in the autism world when they did. These are good kids we’re proud of and not perfect by any means, but they’re good people.  We took joy in all of them and their achievements that day, knowing we all had some part with our Sib Shops and family Christmas parties and pool parties.  We tried to give all of them as “normal” a childhood as possible with friends who could understand and it was wonderful to hear what they were up to.

Then the conversation took a funny turn.  Despite not seeing each other for years, all of us picked up right where we left off in conversations, interests and sharing aspirations for our sons with autism.  It was so supportive, so welcoming, and so comfortable to be able to just be me and not worry about explaining every blessed thing and being with people who could understand.  A peace came over me, like no time had passed. It was as if it were the old days, when the kids were in school and anything was possible. There was such a sense of friendship, of comradely, acceptance and understanding at lunch that day. I wish I could have saved the feeling somehow to bring out when I needed it.

We started to reminisce once our food came about all the treatments we tried with our kids, the crazy ones as well as the more conventional ones.  Vitamins and behavior techniques seemed to help some as did vestibular stimulation and reading programs.  Diets worked to a small extent but not as well as you would think.  We laughed about one “theory” which was very popular during our sons’ elementary school years and the amount of money it would have taken to do it…..and was disproved soon after.  One or two of us confessed to trying something but not telling the rest because we were embarrassed—rose colored glasses—and we laughed and laughed.  No one else could understand why someone would try something like that, but we did.

Soon it was time to leave and we vowed to do Lunch again.  It is to my everlasting regret we did not because Jeri is no longer with us.  She is with us in spirit, I think.  Her sense of fun and silliness and stubbornness and love for her son Pete I will hold in my heart for the rest of my life.  I knew the rest of us will as well.

Every month is Autism Awareness Month at our house!

*All names slightly altered except for Jeri’s

 

Listen Up, Teachers!

I’ve mentioned I am a *retired* local ASA (Autism Society of America) Chapter Prez..  I still get autism calls because my phone number is out there on some forgotten website in the cyber-sphere, collecting cyber-dust I would imagine. I spent an hour and half today with one such Autism Call from a Young Autism Mommy and I have to tell you….I am livid.

I really thought with autism in the news and much more *popular*,  all these antiquated and tired views and reasons for autism would be retired.  I really thought the treatment I received thirty-plus years ago because I *caused* my son’s disability would not be happening to the Young Autism Mothers (my daughters-in-autism) of today.  I really thought folks (especially educators) knew about some of the challenges of parenting a young child with autism, such as  lack of sleep, the screaming, the feces smearing, the temper tantrums from even slight changes in their lives, the food and feeding issues, the lack of fear of dangers, and the sheer exhaustion and guilt that goes with all of it…because, well, autism seems to be much more prevalent and trendy than Back in the Day. I was wrong. My Young Autism Mommy has been guilted so much, she is afraid her child will taken away from her by the school district.

Her Little Boy was diagnosed with autism a few months before his third birthday last year, weeks before the District’s Early Childhood Screening. She was able to get a last minute appointment for the screening and, armed with the appropriate papers from the diagnosing physician, off they went. She was told Little Boy was eligible for all services and was given the option of having him begin right then because they had space for him in an afternoon class. She was also told they would be doing a Case Study (For those of you not familiar; Case Studies are done every three years throughout a special education student’s school career and can include behavior, academic, speech, physical, occupational and social evaluations) during the summer no matter if he began the EC Program immediately or waited until the fall.

She and her spouse decided to wait until fall since Little Boy was in a Montessori Preschool in the afternoon with teachers who loved him and he loved them too.  Since the EC Program he would be in was only half-day, they reasoned that in the fall they could keep him in the Montessori program he loved for half the day and do the therapeutic Early Childhood Program the other half. As well, she was promised the Case Study could be done during the summer. As you can imagine, nothing went according to plan.

They tried to bully  her into enrolling him right away and when she refused (beginning a school program the last 6 weeks of school with a young child with autism….were they NUTZ?), they became belligerent.  They told her he would NOT be able to start school in the fall until the Case Study was finished and oops, they misspoke, couldn’t do it over the summer. They scheduled him for the morning program, as she requested so he could continue with his Montessori Pre-School. Then just before school began at the last minute, decided he would be in the afternoon program afterall.  The Montessori School didn’t have room for him in their morning program so Young Autism Mommy and Young Autism Daddy decided to try the EC program alone.  It took the District four weeks to do their initial Case Study (their home visit didn’t go well). Then, it was as if the District had never heard of autism when Little Boy had daily meltdowns, lost what speech he had, had to be put back in diapers, flapped his hands (loudly) when he was required to sit for any length of time and ate crayons behind his teacher’s back. He’s now improving, behavior-wise, but they have to get these things under control before real learning can begin.  Transitions are hell for children with autism and you would think the school district would have a plan for children such as Little Boy. Apparently, not. And the District is blaming his family environment for the regression.

I am going to Young Autism Mommy’s first spring IEP meeting with her.  I haven’t gone to an IEP meeting since Kiddo aged out but I feel so outraged by her treatment, I am going.  Don’t think me gullible; I am meeting her and Little Boy at our local McDonald’s Playland next week, a week before the IEP meeting, to meet her and her child to see if this is the real deal.  My instincts tell me it is.

We’ll decide what she wants when we meet at McDonald’s and what Little Boy really needs.  If I do end up going to the meeting, I will explain it’s Young Autism Mommy’s show, not mine. I will be there for moral support and to *translate* from education-ese to regular English anything she doesn’t understand.  Young Autism Mommy is going to need to step up and not be emotional……in a way, the District is manipulating her by frightening her by their vague threats.  If she’s frightened, she is less likely to push for what Little Boy needs and is entitled to. And if Little Boy doesn’t get all the services he’s entitled to, it’s less money for the District.  (A quick IEP tip from Your Autism Cuppa here–it’s all about money so you should follow the money!)

I’ll try to write about what happens at McDonald’s next week.  The more things change, the more they stay the same!

Every month is Autism Awareness Month at our house!

 

Childhood

I can see that day–that perfect day–as if it happened last week or last month.  That perfect day in my boys’ childhood.  That normal, perfectly ordinary day.

It was a Monday in late October.  One of those days that is bright and warm during the day and cold and crisp as it begins to get dark.  It was like so many Mondays at that time in our lives; busy.

I was in graduate school and arranged to have early days on Mondays most semesters.  Our Kiddo had swimming class and The Middle Boy and The Youngest had piano lessons on Monday afternoons.  Rather than have their sitter take them to their activities, I wanted to take them as much as I could.

This particular Monday, my friend, who also had an autistic son in the swimming class, arranged to take Kiddo with her son.  I would pick them up and take them home.  I dropped The Middle Boy and The Youngest at their piano teacher’s home and went back to our house to get things ready for dinner.

I had baked chocolate chip cookies the night before and made ice cream sandwiches with the cookies and put them in the freezer.  I set the table and folded napkins.  There was homemade ice tea in the frig and all that was left to do was put the chicken and potatoes in the oven so that we would have only thirty minutes to wait when we got home.  I punctured the potatoes and sprinkled some salt, pepper and paprika on the chicken.  The salad could wait until we got home.  A very simple meal but one I knew my family–and all three boys–would eat.

Looking at my watch, it was time to pick up The Middle Boy and The Youngest and grabbed my purse and got in the car.  I never listened to the radio when driving with my kids–I wanted to hear what they were saying and pay attention to them!  I pulled in front of their teacher’s house and the boys tumbled out, and she waved to me.  They were happy–good lessons for both–and had had a chance to play with her daughter’s Game Boy.  They enjoyed the Game Boy part of waiting for their lessons; since I was such a mean mother I wouldn’t allow them to have one.  Each was arguing about some point of one of the games and the bickering and teasing continued down the street as we headed to the Special Rec Swimming Center, where Kiddo had his swimming class.

It was near dusk, and rush hour.  Traffic seemed to crawl.  Nevertheless, we were five minutes early picking up the boys.  I always parked very close to the entrance of the swimming pool and in that cool, crisp air we could feel and smell the warmth and chlorine–the air was heavy with it.  I looked out of the car window and could see the lights begin to come on outside of the building.  I could see the children–the children with autism–begin to leave the pool area and go to the dressing rooms.  It would be a few minutes before The Kiddo and Joshie would be ready–I could see their aide lead them to the changing area.

I ran in and led Kiddo and Joshie by the hands to my car with all of their swimming stuff as well.  I put the boys in the car and opened the trunk to put their bags in.  It was then it hit me–what I was doing, picking up kids and carpooling–was something very normal, something people with Neuro-Typical children take for granted.  I wouldn’t get to do a lot of this in my life with Our Kiddo and I should savor it while I could.

I can still smell the cool, crisp air, the chlorine, see the petrified French fries on the floor of the backseat of my car and hear The Middle Boy and The Youngest bickering about their video game.  I can see Frannie’s face when I dropped off Joshie with his soggy gym bag.  I can remember Hubby complimenting me on the ice cream sandwiches and asking me if there was anything new.  I remember my answer as well–not anything new, honey, not a blessed thing.

Every month is Autism Awareness Month at our house!

April is the Cruelest Month

Back in the days before Autism had an awareness month, I loved April.  I loved the newness and the green smells and the budding of the trees here in the Midwest. I loved watching daffodils and tulips peek out of the earth before they sprang up in all their glories. I loved the noticeable lengthening of the days and the sunshine on my face, giving me a glimpse of what May and June promised to bring. I loved watching the rain come down, in light showers or in downpours, and leaving the grass green in its wake. But now April is Autism Awareness Month and I am often taken off guard by what that means.

April was not always National Autism Awareness Month. The first official autism awareness month was October.  It is the month of my birthday and it was fine with me to have Autism Awareness Month in October.  But October is also National Downs Syndrome Awareness Month and the autism community didn’t want to share their awareness with another developmental disability. Also fine with me. So National Autism Awareness Month was shifted to January.  That lasted for a few years.  January is right after the big winter holidays and we were told by those in the ASA office it was difficult to get people enthused about autism awareness right after the holidays. And so April was designated as NAAM and it has been for 20 years or so.

I suppose the reasoning for choosing April for NAAM is because the weather is usually better across the USA and there is more time to plan something great when school begins in late August or early September for  April. We can have Walks and do things outside for Awareness and it’s easier to travel.  Our Kids are in the swing of school programs and many teachers and administrators are inclined to do things as part of an established curriculum for Autism Awareness Month, both for our ASD kids and their NT peers.  Pennies are collected, puzzle pieces art is displayed and Best Buddy programs are highlighted. It’s always fun to see what our local ASA chapter comes up with every year or what autism books will be part of the National Autism Awareness Month at our village’s library.

It’s a bit melancholy for me, having April as NAAM.  I’ve always thought of April as a new beginning, a renewing of life. And it is.  But knowing how far we’ve come and where we still have to go for awareness and acceptance makes me want to cry.

Every month is Autism Awareness Month  at our house!

Running on Empty

I just got off the phone with The Youngest.  He was whining and I just wanted to slap him upside the head for it, too.  He probably has a bit of ADD but has a genius IQ so perhaps we (and his teachers) didn’t think it mattered when he was a child, comparatively speaking.  He’s an *absent-minded professor-type* and called because he forgot (again) something he needed at his office at the community college where he is an adjunct.  Did he expect me to find it  and drive it over or email the information or???????? No, he did not. He wanted me to tell him how to not be so absent minded in the future….whine, whine, whine! I put on my best educator/behaviorist hat and proceeded to tell him what to do (well, he asked LOL!!!!!!) and he did not like it. Sigh.  I would have cared, I really would have, but I couldn’t this time. I am running on empty.

This has been a crazy week for me, work-wise, with the upcoming weekend just as nutzie featuring several social obligations for Hubby and me as well.  I had a big community arts summit meeting Thursday morning and baked blueberry muffins under duress because MY OVEN DIED ON GOOD FRIDAY WITH GUESTS COMING FOR EASTER DINNER. Ahem, where was I? Oh yes, now I remember, the top oven of my double oven died two days before I had to feed 15 people on Easter Sunday. Hubby and I went out on Easter Monday, bought a new one and it was to be delivered this week.  In the meantime, I used the grill in a snow-shower and in a rainstorm and made lots and lots of soup. Could the oven have been delivered Monday or Tuesday or even Wednesday? Oh no, they called as I was leaving for my Thursday morning event (after baking those damn muffins I agreed to bake the night before and burning my arm because the damn thing was on it’s last legs) wanting to come over THEN.  Nope, I told them, and they promised to deliver the oven as their last stop of the day. Okay with me (it shouldn’t have been…it was finally installed at 8 pm. SIGH!).  But I wept all the way to my morning meeting.  I am running on empty.

I am weepy, I am crabby, I am impatient.  I swear this is not my usual MO.  But this is what happens when the minutia of life and other people depending on  me to solve THEIR problems and dealing whatever Autism-Crap is happening with Kiddo and not getting enough sleep or self-care.  I am the Fixer.  I am the Chief Case Manager for Kiddo.  I am the Equipment Supervisor of this Household and when something breaks, needing to be repaired or replaced, I am the one who compensates until whatever is fixed or delivered, no matter what is happening in my professional life or my life-life. And I have to figure out how whatever is happening can have the least impact on Kiddo for the least amount of Autism-Crap.  I am running on empty.

I need sleep. I need a mental vacation.  Hell, I could use a REAL vacation but I shouldn’t be greedy, should I?  If I had enough reserve of strength from some where deep inside to draw from, to reach into when the piddly crap of my life takes over, I would be fine. Every time I have been able to store up what I think is plenty of reserve and need to tap it, it seems to not ever be enough. I am always close to empty.

I am never completely rested.  I am never truly at My Zen Place (what I jokingly call it when  I feel cool, calm and collected) any more. Coffee and chocolate are not helping me get through the night (or day) anymore. Is it because my other kids are back home? Maybe. Maybe it is because I didn’t feel I had to solve their problems when they had their apartments in grad school and now I do. My bad, I suppose. It’s hard to break a 30+ year habit of always stepping into the breach.  And 14 year old ovens break at the most inconvenient times, too. But I am the one who feels I have to do it all, solve it all and manage it all. Old habits are hard to break. So I am running on empty.

I have often told young parents having a child with autism is like running a marathon, not a sprint. I’ve been running one for over 36 years and I am beat. Always running on empty.

Every month is Autism Awareness Month at our house!

The Sleepless Sisterhood

For Laurie and Ellen

 I read many child rearing books when I was pregnant.  Being the eldest of six, I knew what to expect about diapers and feedings and teething but was worried I wouldn’t be the Perfect Mother I dreamed about being. After Our Kiddo was diagnosed with autism and all hope of perfection was gone, there were many things I felt no one else could possibly be experiencing.  I was ashamed and did not know where to look to ask questions. There are still no parenting books for children with autism, at least, not the kind I wish there had been when Kiddo was young.

What I wanted was a Dr. Spock-like tome, to tell me what was normal for a child with autism, what was normal simply because he was 7 and the wisdom to know the difference.  Dr. Spock told us to trust ourselves because we know more than we think but for a parent of a child with autism, or any disability, how could we know anything?  Where is our Dr. Spock?  I wanted to have an expert tell me to trust my gut and be creative but there wasn’t a book like that anywhere.

With normal mothering, the generation before helps the young mother, not just with advice, but with building her confidence and self-esteem and perhaps some babysitting. No mother or aunt or sister or cousin came before me parenting a child with autism.  I felt alone and afraid and a failure.  How could I explain Our Kiddo’s feces smearing to my sister-in-law when her kids were so perfect?  How could I explain to my mother the reason I was so tired was because Kiddo hadn’t slept for days and was why I was taking a nap at 11 am?  Whom could I ask about perseveration and flushing unripe pears down the toilet so often I knew where my plumber vacationed every year?

I dreamed of a scenario—a kitchen table–where parents of younger and older children and adults with autism gather.  There is coffee and tea and a great big bowel of M&Ms.  There is laughter and some tears, handholding and grateful thanks.  And we all leave the table; if not happy, then comforted, knowing others have gone before us and others follow us and accept our help.

Some autism-related behaviors are so unspeakable, so unnerving, so disgusting and exhausting; no one talks about them at all.  It wasn’t until Our Kiddo was school age and I met other parents, I felt a little better. Joining a parent support group, I begin to share.  The sharing began in frustration to show others how “bad” I had it but I didn’t know other parents had the same problems. Once it came out, relief came and a sort of camaraderie—a very odd camaraderie—began.

Many of us are ashamed and disgusted and terribly hesitant to ask other parents for help with our children’s feces smearing but many have had this problem.  You don’t know it until it is blurted out. Then the gates open and we babble, grateful to know we are not alone and begin to make jokes about poop with the only other people in the world who can understand and not be disgusted.  I was stunned to know these weren’t unique problems.  I see the same look and hear the same tone in young parents now when I first tell them they are not alone.

I knew a child with autism who had to see a train—or wait for it–when crossing a certain set of railroad tracks. It sounds “charming” but the mom and dad had to wait for a train to pass, each and every time they had to cross those tracks several blocks from their home, or be subjected to a screaming, flailing fit.  They kept a train schedule for both the commuter train and the regular freight trains so they could avoid or not avoid those tracks. Going to the grocery store or park or school or grandma’s became a plotted out adventure and exhausting. And yet, this is “normal” for many families with kids with autism and would be nice to know something similar can be part of your child’s behavior. And it isn’t unique to your child or because you are a bad parent.

Rituals of any sort can be frustrating, such as the child who HAD to ask everyone to name greeting card companies instead of saying “hello”.  What do you do?  When does it become something maddening?  Those parents would try to tell new people he would meet beforehand about this “quirk” so they could be prepared. They insisted he “allow” people he knew only one or two companies and be done with it–“you know Grandma knows more than two, Justin!”–and would give strangers a laminated list to read, which he allowed, when meeting the first time.  It was through frustration and many difficult situations they came up with this solution, a good one in my opinion.  It would be nice to have a boilerplate solution in place to start with but who could predict this?

Autism is a spectrum disorder and while those of us with lower functioning children or higher functioning children can complain about the other not understanding, but the truth is, sometimes there is overlap with quirks. Between all the other things, dealing with behaviors and odd quirks make our lives a challenge no matter the functioning level.  We are tired because our children have not slept with any regularity for years—and I mean years.  The higher functioning kids can fall back to feces smearing if there is a change in their lives or a frustration. The lower functioning kids can sleep well for years but illness or some little change can derail their sleep pattern.  It takes a well thought out behavior plan to get them both back on track. And it is normal.

We—and our children—are more alike than we are different.  We all know the frustrations of this disability and even share our solutions with each other. If we let them, other parents can be our biggest allies and our best friends.   After all, we all belong to the same Sisterhood.

Every month is Autism Awareness Month at our house!

One More Thing

It is what has become, a very typical Monday afternoon.  The dishwasher is churning away, there is laundry in the washer and dryer and I am at the kitchen table, typing away on my laptop.  Our Kiddo is somewhere, giggling, and that can’t be good.  He spent the morning working on his academics and started to watch “Toy Story” yet again.  He had lunch and then decided to go into the basement rec room to play with his new set of giant dominoes.

He has been a pill lately–booby trapping my kitchen cabinets by pulling the contents to the very edge of the shelves so when they are opened, stuff falls out on top of you.  Because of this little “trick”, I had a glass kitchen cabinet door shatter just before Christmas and several of my stoneware bowls and plates have broken as they bounced out of the cabinets.  This seems to amuse him and he giggles and laughs when someone is caught by falling Pfaltzgraff.  “ We” are not amused in the least.

He has given himself several eye infections by, well, you don’t want to know.  Let’s just say I don’t have towels of any sort in the boys’ bathroom or powder room now and wash bath towels on a daily basis.  Add this to the fact we don’t have toilet paper out in the open in any of our bathrooms, and ours is not exactly a “NT-friendly” place to go to the bathroom.

We adapt and try to outfox whatever his latest fixation is.  I am having the powder room and the boys’ bathroom cabinets resurfaced and having permanent child locks put in.  I hope this will put an end to some of his bathroom misbehavior and when they finally come to do the work, have a behavior plan ready to be put in place. He wears a pair of trendy looking blank glasses when it looks like the eye is bothering him and that seems to help with his eye infections.

We have a second refrigerator and a set of panty shelves in the garage to hide food we don’t want him to have, or we don’t want him to eat at one sitting.  It seems like I ration his food, but that is really not the case.  He is now on a special diet for his migraines which no longer allows him certain things the rest of us still want to have.  He will drink a gallon of fruit juice at one sitting or a whole case of soda pop if I don’t watch him.  There will be no juice or pop for anyone else, and that is just not fair.  He enjoys food and eating, and even cooking, but needs to eat everything he likes when he sees it instead of waiting.  I buy things he likes in bulk and hide it until I want him to have it.

He is able to live at home, in a “normal” way, and I am grateful he is able to be with us.  There are times when it seems to me this is such a crazy way to live.  We adapt, we outfox, and we change our lives and our diets for him until I think we can’t do anything more.  There are days when I think I can’t do one more thing to adapt for him—that one more thing will push ME over the edge.  And then………I do one more thing.

Every month is Autism Awareness Month at our house!