As Fall Begins in Earnest

I begin teaching tonight…one class, no biggie…..and then next week almost everything else begins.  My tutoring students start next Monday and then I never know when I’ll get a inclusion consulting call, so my consulting times are built into my life. I’m busy, with writing for my professional society’s website, and the other interests keep on coming.  And of course, My Kiddo is still around.  I haven’t really said anything about adult issues, and won’t, not yet because it’s kinda depressing.  Rest assured, one of these days I will.

This fall, things are a bit different because my other Two Kiddos have flown back into the nest. Son #2–a scientist–has a new gig within a 15 minute commute from the Family Hacienda, so it makes sense he moves back in to save enough money.  Enough money so when he DOES move out, he is out FOR GOOD.  He already knows what those stipulations are….and he does help out with His Big Brother, so….so far, so good.  Son #3 just got his Masters (Son #2 has a M.S.) too and is back here, perhaps for a few years, while he saves to pursue a doctorate. He’s a classical musician, freelances and is an adjunct at a community college.

It’s been weird to have the Whole Gang back together, let me tell you.  And the reason I am vague about almost everything here–except for the actual details of our Autism Journey–is because of Kiddo 2 and Kiddo 3.  When I told them I was going to Blog about our family and about autism, both asked me to not mention our names, exact location or anything that could be Googled and traced back to them. And I have to honor their wishes.

Their lives have always had an autism connection.  Son #2 took his first steps in the waiting room of the clinic where his older brother had private speech therapy.  Son #3 saw Santa the first time at a ASA (Autism Society of America) local chapter holiday party.  I suppose, I’ve always felt a bit guilty THEIR lives were not *normal*.  There were Sib Shops programs and we regularly got together with other autism families with kids their ages so they could play with people who would *get* them. And, when we could, we tried to make sure they felt like their own person. It is for them I am vague because they deserve some privacy.  They are wonderful young men and the Best with their brother but they are not saints.

We begin the fall with a whole new situation here……laundry will be an issue, I can already tell……and I am sure there will be a few hiccups. But I am happy they feel good enough about our home and family to come back when they need to….makes me feel we’ve done something right!

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!

 

 

Down the Autism-Brick Road

I have been in the Autism-Biz for about 30 years.  I don’t count the time before we realized anything was wrong because that was Happy-Land and Baby-Land and Everything-Is-Great-Land.  I remember, vaguely, how it felt to have a perfectly formed little boy whom everyone thought was adorable. Those are misty memories and that young mother I was,  was a wimp.

After our diagnosis, then what? You must think back in the days before autism was trendy (yep, being flip but just follow along here)there were no therapies and certainly no therapies such as we have today.  You would be wrong. Many of therapies in use now (they usually have different names) were in use back then. And we must have tried them all!

There were plenty of treatments to sort through and Hubby and I came up with a system how to decide what try.  He is a scientist and I am a teacher so we divided the therapies–anything medical or diet related, he would research and anything educational or speech related, I would.  However, if one of us came across something promising in the other’s category, we would ask them to research it. We had a *smell test*…if it didn’t smell right to us, we wouldn’t try it.

Since hubby was in grad school and we lived in a university town, there were many wonderful programs Son One was eligible for.  Early intervention and multiple times a week speech therapy (his former speech therapist developed her autism protocol using her work with our Kid), Early Childhood Education were all the basics we had in place.  We tried Son-Rise therapy–which meant we spent hours in a dark bathroom.  We tried  sensory integration therapy and music therapy and play therapy and social stories, all of which helped a bit.  What really worked for us is now called ABA.

Vitamin therapy was a disaster for a lot of reasons. He ended up in the hospital with one…..that story will be a future blog post. He refused to take another, very expensive vitamin powdered version we decided to buy instead of the huge tablets, no matter we sprinkled it on his favorite chocolate pudding or apple sauce or orange juice…what a mess!

We must have tried five different diets.  The elimination diet was six of the longest weeks of my life because with three kids, the younger two being gifted and questioning, we had to put ALL of them on the diet.  And the now common GFCF diet, which is now pretty standard to use for kids with autism, was miserable. Whatever we tried, diet-wise, didn’t work. But try it yourself, it might work for you.

Believe it or not, when the Kiddo was in his late 20s, we decided some of his acting out behaviors seemed to be pain related and tried an anti-migraine diet and…ta-da….he is 95% better than he has ever been!  Being tenacious has paid off, big time, with the diet issues. We didn’t give up, so you shouldn’t either!

Ummmm, YUCK!

Those of you with a squeamish stomach should probably move on.  This will not be for the sensitive!

I have been pregnant fours times, carrying three pregnancies to term. Each time, I knew I was pregnant within days of conception for a very simple reason…I started to vomit!  Each morning, I lost my cookies but was fine come 11 am. Odors set me off or looking at pictures of something.  It could be food, it could be laundry detergent, or it could be a hot day with mowed grass especially fragrant.  I kept a plate of saltines and a bottle of ginger ale at my bedside and would nibble a cracker or take a sip before I got out of bed and that seemed to help.  But by 11 am, I was back to normal and could go about my business. Tough to do when you have toddlers and a teaching schedule!

When expecting Son #2, Son #1 was about two and we were beginning rounds of testing  to get a diagnosis.  But a funny thing happened around that time, something so odd and so shameful, I told no one about it;  Son One began to smear feces.

I woke up one morning and  couldn’t get out of bed before I started to heave from a horrid smell.  I ran to the bathroom, went about my business and then peeked in to Baby One’s room.  I started to gag….my Lord!  Baby One was covered in poop and so was his crib and the wall next to the crib.  I went into my room, found a red bandanna, tied it around my face and then started the clean up process.  I ran a bathtub of bubbles before I got the Baby, grabbed him, stuck him in the tub, scrubbed him from head-to-toe—did I mention he was frightened by my Old-West- Train-Robber look?–so he was screaming.  I dressed him, and brought him into the TV room, turned on Sesame Street and got the cleaning supplies.  By now, I was dry heaving under the bandanna.  I stripped his bed and threw the soiled linens in the bathtub while I cleaned the crib and wall.  I took the bed linens to the washer and started a load and then began to sob.  I made him breakfast and got him from the TV room. I thought this was just a one-fer, I didn’t know this behavior would continue.

A few weeks later,  I put Baby One down for an afternoon nap and, since it was after 11 am, was able to do some housework with cleaning supplies that would make me nauseated in the mornings .  I began dinner and then washed the kitchen floor.  I wanted to finish the floor before I got him up, so eventho I could hear him rustling around, I finished. Big mistake.  He was sitting in the middle of his crib, happy as a pig in…..well, you know! My husband didn’t quite believe me at first, because it seemed so bizarre.  One night, we heard Baby One giggling (yes, you read right, GIGGLING) and when we went in to check, guess what we found him doing?

It was right around this time I stopped calling family regularly.  I was so ashamed and really, whom could I talk to about this?  Would my Great-Aunt Pat  or Cousin Charlotte or my Mom or Mother-in-law know why and what to do? They already questioned me as a mother and this would cause them to think less of me.  I told no one and my husband and I did everything we could think of to stop it.

Now the feces smearing didn’t happen all the time, so we never quite knew what would trigger his desire to do it.  I checked on him often when he was napping.  We tried to get him on a BM schedule, something we were trying to do anyway to have him toilet trained (hahaha, the was a joke on us….he wasn’t completely toilet trained until he was six) before the new baby arrived.

Throughout his childhood, he had bouts of smearing, most intense right about the time he was finally toilet trained.  After that, it was occasionally, usually if he was too lazy to get up to go to the bathroom.  We used a behavior technique called *over-correction*, which meant in this instance we made HIM strip his bed and put his linens in the washer, after we gave him a COLD (he loves hot/warm showers so a cold one would get the crap off but not give him pleasure) shower. He was about 12 when we resorted to that and I am happy to say, that really put an end to this behavior.

Knowing what I know now, it is common for many, many children on the Spectrum to be feces smear-ers.  Doesn’t even matter their functioning level, they just smear.  The whys don’t even matter…for every Kid, there is probably is a different reason. It’s not unusual AT ALL and in later Blog posts, I’ll discuss some ways of handling it so it GOES AWAY!

 

It’s About Who?

I remember being stunned the first time I was told, “It’s not about you and your feelings. It’s about your child.”  Eldest Son was almost two, not talking and the consensus  opinion–from the In-Laws–was he was having ear infections I was not having treated.  He had “fluid in his ears” and I couldn’t be bothered to take him to the doctor, so the story goes, and I was selfish and neglectful….blah, blah, blah.

Before the character assassinations began, if they had asked me if I thought he was having trouble hearing I would have told him no, he hears stupendously. Why would I say that?  Every time I opened  a bottle of my favorite soft drink in the kitchen, he would come running from the next room because he heard the carbonated hiss of the bottle opening.  If I opened a box of cookies or a bag of candy, he would suddenly appear.  Lest you think we were eating primarily sweets and soda as our diet, I would tell you it was only on special occasions and rarely for him.  But he was a charmer even then and he would bat his big brown eyes at me and flirt relentlessly until I gave him a sip or a piece of candy. If I did so, he would take what he wanted, smile at me and leave.

He was also what we called a “commercial detector” and would run into the TV room if he heard one of his favorite commercials (anything with a catchy jingle at that point) to see and hear it.  He’d step in front of the TV screen, watch it and go back to his toys when it was finished.

Bowing to the In-Laws wishes, we took him to have his ears checked and lo and behold, not only did he NOT have an ear infection but his ears were the most perfect ear drums of a two year old the doctor had ever seen! We also took him for a specialized hearing test at a local university. The results were inconclusive because he wouldn’t cooperate. The examiner knew he could hear just from observing him but since he wouldn’t cooperate, there was some concern. And so,  our Autism Journey began.

Of course, it wasn’t about me, it was only everyone’s concern with his development. But what WAS about me was the easy jumping to conclusions that somehow it was MY FAULT he wasn’t talking and how that made me feel.  I was a nervous first time Mom and any variation of his bowel movements or a head cold sent me to the phone and my pediatrician.  I still do not understand how it could be perceived I would not call that pediatrician if I thought he couldn’t hear.

And so it went, any time a family member had a *brain storm* as to why he wasn’t talking, I was automatically assigned the blame.  Could he be malnourished? Me, of course, not feeding him properly! He had quirky diet issues common among many kids with autism. Since we were two years away from that official diagnosis, how would I know?

My self-esteem as a parent took a heavy toll.  I stopped calling family because I didn’t want to get the third-degree as to his not talking and what we were doing about it.  Considering it was me making appointments, taking him to early interventions and all sorts of therapy, I needed all the strength and self-esteem I could muster. And listening to someone tell me I was a horrible, neglectful mother didn’t do anything to help…..me or my son. If it was truly about HIM, then why berate the one person who was trying to get him help?

Your Autism Cuppa

Over thirty years ago, my eldest son was diagnosed with autism.  Well, not exactly “autism” but he was  close enough to have the doctor tell us if we needed him  to be officially “autistic” to get services, that’s what he would call him.  He’s now, a string of DSMs later, officially “Autistic,” so that’s that.

Before the diagnosis, our friends and family tut-tutted about his development–he wasn’t talking so we must not be talking to him enough. He had trouble making eye contact so there must be something we were doing–or not doing–to cause it.  He rocked and banged his head and stayed awake for days and smeared feces–my fault, my fault. And most of all, it was my fault.  No one else in either of our families had trouble with their babies, so it must be me. Me. Me. Me.  And their criticisms weren’t about me, I was told, but about my First Born–so my feelings being hurt, well, too bad.

After we got the diagnosis–Pervasive Developmental Delay, NOS with autistic tendencies–I thought I would be vindicated.  Nope.  That’s when the real criticisms started. And our families withdrew from anything having to do with us.  There were no Mamas, Grannies, Aunties, Sisters or Cousins who could relate to having a child with differences, or REAL differences, so there was no help or compassion for me or my husband. We were called selfish for having other children. And those children turned out to be GIFTED so we truly were on our own.

Many times during those early years, I wished for what all  my friends with neuro-typical children had–a circle of older parents and family I could sit  around the kitchen table with and talk about my children.  Instead of criticism, I would get understanding.  If something seemed odd to me, I would be reassured it was normal. And someone would occasionally tell me I was doing a good job.

I have made many Autism Friends through the years as a former Autism Society of America local chapter president.  But Son #1 was in Junior High by that time and when I had really, really needed a Sis or a Cuz or an Auntie to hold my hand or help me–literally–get through the night, it was too late. I was coping very well, thank-you-very-much,  without that Circle of Family I had wished for.

Recently, I thought it might be nice to BE that Mama or Granny or Auntie or Sis or Cuz I had envisioned three decades ago and decided to start this Blog.  Maybe I could help all those young parents still finding their way.  Maybe I could give someone hope to know it gets better (or easier) and you CAN have an intact marriage and your NT Kids WON’T be screwed up (too badly LOL!) and maybe your career will be okay if you only work part-time or……….you fill in the blank.

So, pull up a chair.  Pour yourself a cuppa and sit down.  Relax.  Your Autism Cuppa is waiting for you right here.