Post-NAAM and Pre-Mother’s Day Thoughts

Well, National Autism Awareness (Acceptance) Month has come and gone for 2016.  I always learn something new during the month of April. This year, I learned some think it should be National Autism Acceptance Month. Sigh. I suppose.  But, in order to have acceptance (and to accept and to be accepted and to learn to accept) there must first be awareness.

There are still plenty of people out there…they must live under a rock, but I digress…..who don’t know what autism is. And there are plenty of people out there who THINK they know what autism is, and they truly don’t. There are all sorts of misconceptions of what autism is…and isn’t. It is our responsibility, I believe, as Autism Parents to help others in our communities and in our extended families understand autism and our children. A month once a year seems like a good idea, and speaking as someone who lived *back in the day* having a child with autism with NO National Autism Awareness Month, I can you, IT IS a good idea!

As far as autism acceptance  is concerned…..we must first accept OUR OWN CHILDREN.  It is difficult to expect others to *accept autism* when we do not. Does that mean NOT trying new things to help our children  be the best they can be, autism or not? NO!  Does that mean giving up? HELL NO! My Kiddo is 36 years old and we still try new things all the time! What it does mean is loving the person and accepting the disability as fact. We can all get crazy with the *autism cure* stories but there comes a point when striving for a complete cure is counter-productive to our child. They are whom they are…accept it and move on. Accept it and move on.

Mother’s Day is this Sunday here in the U.S. My first Mother’s Day, Hubby asked me what I would like for my gift.  I remember telling him I wanted some time to myself, and not much else.  Our Kiddo was about three months old that Mother’s Day. I was nursing and always seemed to smell like sour milk and spit-up.  The luxury of going to the bathroom or having a shower or shaving my legs without an interruption sounded like such a big deal. Feeling and smelling clean for a change made me giddy and, as I got into the bathroom that Sunday morning knowing Hubby would handle the baby, I thought I could handle being constantly “on call” for his childhood because his childhood wouldn’t be forever. I didn’t know how long it would actually last.

That first Mother’s Day, my mother and mother-in-law told me, as my kids got older, I would have more time to myself and I would have more freedom.  I believed them; why wouldn’t I?  But, now I’ve been a parent of someone with special needs for over 30 years and I’m still waiting for some time for myself.  It piles up, that lack of “me” time and it festers and eats away at you as a person.

Mother’s Day is different things to different mothers.  The pictures of loving children with their adored Mother, with their flowers and breakfasts in bed and trinkets made of gold spray-painted macaroni conjure a certain image of a typical motherhood. While I have received my share of flowers and pasta bedecked items, it is not the motherhood I have often experienced.

Special needs mothering is motherhood in its most condensed, purest form. Most of us in the autism and special needs trenches have to be hands-on at all times, and have been for many years. We don’t get a break and we are tired. All. The. Time. We are vigilant and detail oriented because if we aren’t, something important may fall through the cracks and our child will suffer for our relaxation of the moment. Our motherly love transcends the type those typical mothers feel…it has to. Our kids, to outsiders, may seem unlovable or impossible to love…but we love them. Unconditionally. And the only other people who understand and *get* us are other special needs mothers.

Happy Mother’s Day to all my fellow Autism and Special Needs Moms. I wish  a nice afternoon nap for you on Sunday. Or, if you aren’t able to take a nap, some chocolate (hid it from the kids!) or a glass of wine or a nice cup of coffee (tea?)or some dandelions in a juice glass hand picked by your child or…..a gold spray-painted macaroni trinket!

 

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A Different Person

Having a child with a disability is different from what I expected.  During the diagnosis process, there was much said about what Our Kiddo’s language delay could be from.  There were power struggles.  There were accusations.  I always felt once we had a name for his problems, our families would run to help or give the outward appearance of support, or at least respect.  What I didn’t expect was what we got.  I became a very different person.

True autism, not the autistic-like behaviors which occur with real neglect, cannot be caused.  Talking too much or too little to a child will not cause autism.  We did not know then, as most young parents do not know, nothing we were doing was causing Our Kiddo’s language delay.  We were very unsure of our own parenting skills–perhaps some of what was being suggested could help Kiddo.  We tried to implement some of these “suggestions”, such as not giving him anything until he asked.  It did not work and frustrated both Kiddo and us as well.  Nothing a normal, concerned parent can do will cause autism–you cannot set out to create a child with autism.  Cold, unfeeling, frigid mothers do not cause autism.  We know many things do not cause autism.  We just do not really know what DOES.

The person I was before Our Kiddo and before my marriage doesn’t exist.  I like to think I am a better person but some days, I am not so sure.  I was quiet and shy and liked to assess a situation before opening my mouth.  Despite the fact I have been a performer for almost all my life, my everyday behavior was not flamboyant and at times, mousey.  I was a “Pollyanna” and always tried to see the good in a situation and the good in a person before passing judgment.  I took folks at face value and didn’t spend my time worrying about what they were doing when I wasn’t around.  I always assumed people thought the best of me because I was a good person, honest, helpful, intelligent and loving.

The knowledge someone could think I was a terrible mother has never left me.  I know I am a good mother but being told over and over something I did caused my son’s problems left me always questioning myself.  I have worked to build my self-esteem but sometimes, I lapse and worry I am not doing enough or not doing the right things.

I didn’t expect to justify every choice.  Or to be expected to tolerate people calling each other “retards” in my home, in front of me, in front of Kiddo.  It amazed me when a fringe relative called us “cursed” one Christmas, being told ‘cursed” is not what they meant by their mother-in-law and, in addition, I was imagining their forcefulness.  It is as if having a child with a disability automatically cancels your subscription to polite society and folks think they can say whatever comes to their minds.  I’ve had relatives ask things like–does he have a lower hairline because he’s “retarded” (my side) to asking if we have had his hearing tested (Hubby’s side).

I am a different person.  I can only put up with so much nonsense and then I blow, sometimes quicker than I should.  I am not shy when it comes to Kiddo’s rights, especially at family events.  I use my performer’s voice, posture and flamboyance to explain autism–and my son–to the world.  As far as being “Pollyanna”, I take joy in the small achievements Kiddo makes every day but I am realistic.  I take strangers at face value but never family–I have learned the hard way, through 30 plus years–it is those relatives who don’t seem interested who can throw me for a loop with their ignorant comments.  It is mind blowing being called a terrible mother–or other crass comments– still be married to Hubby and handle the challenges of living with a child with autism. Sometimes, I don’t know how I do it.

It is so important to support parents of young children–in a positive way–when autism or any disability is suspected.  Young parents are unsure enough without having everything about their parenting and character called in to question.  Grandparents and other extended family members must try to step back and assume the young parents are doing everything right, until proven wrong.  The residuals of doubt and hurt in a parent will linger long after the “all is forgiven” is spoken aloud.

We have to live with autism. I was told at various times in Our Kiddo’s life, we would have to live with our choices for him. Some meant it as a reassurance and some meant it as a criticism of what we did and did not do for him as far as treatments and therapies were concerned. Many in our families made it so much harder–harder than it needed to be–living with Kiddo’s autism. But  I am living with it….living with autism….and my darling son….and learning and embracing it and making it my own. But I am living with it…on a daily, weekly, monthly and yearly basis…it is terrifying…but there is nothing else to do…what choice do I have?

Every month is Autism Awareness Month at our house!

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

 

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!