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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Young Autism Mommy Update

A week or so ago, I wrote about a Young Autism Mommy who called me by mistake.  I met her and her ADORABLE Little Boy last Monday at the local McDonald’s playland. Her Little Boy was a very *busy*, very *active* very *typical* of many an almost-four-year-old. And yes, I could tell he had autism just by looking at him. No real eye contact. No real communication other than taking his Mommy’s hand to show her what he wanted.  Some communication is better than none but it still is very stereo-typical of many people with autism.

All Young Autism Mommy wants is to feel respected at her IEP meeting and wants to know what to expect. She feels she was blind-sided a bit when, after the Case Study was finished, she had her first IEP meeting. When she was told she had to sign it before anything could be implemented (not true….you can initial the items you approve of and not initial things in dispute and then sign the new, REVISED document after the revisions. An IEP can be revised at any time during the school year as long as BOTH the school and parents agree to the revisions), she signed against her better judgement.

Her IEP Meeting is the week after Mother’s Day. We’ll go out for coffee the week before so we can go through what needs to happen this time. I’ll suggest to her speech therapy and OT total minutes per week for a half day program.  I’ll also strongly suggest the district hire an autism consultant to help get the most out of what is available in the district.  And since I know *where the bodies are buried* in her district, so to speak, I can honestly say this district has hired an autism consultant in the past–ten years ago, to be exact–because I am the one they called for referrals. School Districts just love precedent!  Ho-boy, this is gonna be fun!

Every month is Autism Awareness Month at our house!

 

Autism Land……Again

It’s been a jam-packed Autism Fiesta lately…and not on purpose as part of our observance of National Autism Awareness Month.

Kiddo’s migraines have been sunlight triggered the last few mornings and after his meds are on board, he’s fine the rest of the day…..but it sets the tone.  He’s more OCD-y. He’s sneakier.  And he absolutely looks for his opening and takes it.

I have had a busier than usual few weeks…so of course, that’s when the Autism-Fairy visits us  at her most intensive.  I’m stressed. I’m vulnerable.  I’m tired and weepy.  Not good if I’m trying to give the appearance of *normal*.

Because the next few days were to be take-out and leftovers, I thought I would make one of the family’s favorite meals on Friday.  It’s a chicken in wine dish I learned from my mother-in-law and it’s a winner.  Only problem is it has to be made the day before so the chicken can marinate in the wine.  I browned the chicken, put it in a white casserole pan, poured the wine and the rest of the seasonings over it all and put aluminum foil over. Then I put it in my kitchen refrigerator. I thought Kiddo would not be able to see through the pan or the foil so, silly me, he would not figure out what it was.

Kiddo was home but the rest of the boys were not…..I made sure to put the pan in the frig when he wasn’t in the kitchen.  And then went upstairs to fold my underwear and get out clothes for myself for each of five events taking place this weekend….I’ve learned to do this so I have what I need even if I have to deal with something and forget.

I came downstairs and The Middle Boy was in the family room, sitting next to Kiddo…who was chewing something.  I asked TMB if he know what he was eating…he didn’t…..and I smelled Kiddo’s breath….chicken in wine……RAW chicken in wine!  I sobbed and took the pan and hefted it to the frig in the garage…..I should have done that to begin with but the pan is heavy and the wine sloshes….if one of the other boys had been home, I would have asked them to do it for me BUT I didn’t want to lift it, didn’t want to slosh it and didn’t think Kiddo could be that DAMN SMART to figure it out…..if he smelled garlic and olive oil, there was probably Grandma’s Chicken in Wine someplace. I felt like a failure because I didn’t think of all the contingencies. And I was worried he would have some sort of salmonella-type GI reaction.

I had lunch with one of my Autism Mom friends, Gigi (not her name), yesterday….this was one of my events (not really an event, but it is to us since it takes months of planning to figure out when & where!).  She reminded me we old time Autism Moms carry this guilt around with us from the days we had home visits and everything we did as far as parenting was concerned was questioned.  I had to agree…..a part of me worried someone would call me out for taking the easy way by putting that marinating raw chicken in the kitchen frig.  But how can we think of everything ALL THE TIME?  ALL THE TIME? The answer is…we can’t…we are only human. I know I’m human but think of myself as Super Autism Mom….I am, but sometimes, I’m not.

Everything is back to normal here.  I am on my way out to the final event of the weekend in about an hour.  And Kiddo?  Suffered no ill effects from his raw chicken partaking.  He is fine. HE IS FINE!

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

 

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!

 

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!