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!

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!

 

The Right to Raise Autism Awareness and Acceptance

I would like to share an experience I had and tell you why I think it happened.

April is National Autism Awareness Month so I was wearing an autism awareness bracelet.  As I was waiting in line to check out at my local craft store, the person behind me noticed the bracelet and asked if I had a child with autism.  I laughed and said my “child” is 36 but still has autism.  She started to YELL at me because *my* generation didn’t do enough to “cure” autism and how dare I wear that bracelet because I didn’t do “diddly”–she just wouldn’t stop.  I actually started to cry.  I have been going to this store for over 20 years, including those years I served as a local chapter president of the Autism Society of America, purchasing yards and yards of puzzle ribbon to use for Autism Awareness ribbons.  This was the first time I have been accosted for trying to create awareness for autism and told I had no right to do so, and I was shocked.  The young woman left in a huff, left her items and accused me of not caring enough about my own child to “cure” him.

I had never met or seen this young woman before our encounter.  If she had known me, she would have known my husband writes much about autism for his profession, I have been active in the autism community both as an ASA local chapter president and an advocate and our family does what it can to promote awareness and acceptance.  We have a pretty good life, in spite of having a child with autism.  And yes, my son is not cured.

I would pose this question to you–what happens when you do everything you can–fight, try new “treatments”–and your child is still not cured?  And if your child is not cured, are you supposed to write your kid off, resign from parenthood as a “failure”, and slink away into the sunset?  This is the impression being given to many young parents of children with autism; if they fight the medical establishment, try untested “theories” and are as angry as possible, their child will be “cured”.  If you don’t fight hard enough, your child won’t be cured and it is your fault.  It is almost as bad as the theory of the “refrigerator mother” touted by the late (and wrong) Bruno Bettleheim.   And autism celebrities seem to be telling us bucking the system gives you an “advantage” in finding a “cure” and certainly gives you the panache the media likes to highlight, but what happens when that doesn’t work?

We tried diets, vitamins, drugs, behavior therapies and many other things.  Our son began an early intervention program at 27 months, very early for the 1980s.  Some things helped, such as a form of ABA (applied behavior analysis), sensory integration therapy and intensive speech and language therapy, and some things did not, such as vitamins and diets.  Our Kiddo is better in many ways than we thought he would be, is nonverbal, uses American Sign Language and tests in the mentally challenged range, eventho we know he is much smarter.  He is certainly not “cured” in a real sense, but is able to function in many situations; however, he will never be able to live independently. At 36, he still is learning something new every day and is proud of himself when he does.  I suppose, since I accept my son for who he is and what he needs right now, my views are different from those with younger children.  This doesn’t mean I have given up or I am happy I have a child with a disability.

We fought, as many did in our generation, to get services in the public schools and in 1991, autism was officially “allowed” as a disability to be put on IEPs (individual educational program) to qualify for those services.  We are still fighting in our state to get quality services for adults with disabilities.

The young woman I encountered was not the first person to deride me for not “curing” my son.  As a local ASA chapter president, I did not bring my son to chapter meetings, simply because I wanted to focus on the meeting and not on him.  On one occasion, I had to bring him early to set up before our meeting because my other sons had events at their high school and my husband was seeing patients (he’s a physician in private practice)later than usual.  He would be able to swing by to pick him up before my meeting started.  Our Kiddo helped me set up the meeting room by arranging the table, bringing the chairs, and setting out the snacks.  He wore his lately acquired letter jacket and was very proud of it–what better place for him to try out the social skills we worked so hard on, right?  Wrong, apparently.  A young couple who were attending our chapter meeting for the second time were offended I brought a MONSTER–my son–as he was not cured and told me so, in front of my son and other chapter leaders.  The young couple told me I had no right to be president since I was a “failure” and by bringing him, I was not encouraging them or giving them “hope.”  They wanted me to lock him up and not bring him out in public.  When my husband came to pick up Kiddo, I was shaking–and my friends were horrified.  I soon resigned, after my commitments to chair a fund raiser, simply because I didn’t feel I should be berated by parents who have not walked a mile in my shoes with no concept of what was to come and no desire to.

How about another view of autism?  After doing everything you can, you have to accept whatever happens at the end.  It may not be a complete cure and you have to come to grips with that.  With 20/20 hindsight, it is easy to tell young parents to try everything but keep in the back of your mind, it may not work–and you have to be okay with that.  It is not so bad, but it is different.  We bring Our Kiddo out in the community as much as possible since he is not a “failure” as those young parents felt him to be, but a “success” of the spirit–his and ours.  We are proud of the things he CAN do and focus on those things, rather than what he CANNOT do.  My husband and I feel we have a good life, an intact marriage, three great sons and are happy, for the most part.  Our two other sons are wonderful, bright, talented young men and love their brother but it is tough.  We wish Our Kiddo did not have autism, but he does.  This is NOT the life we signed up for when we decided to have children, but it is the life we have.  Our family’s mantra is “when God gives you lemons, make lemonade–or an Old Fashioned”.  It takes time to get to that place, and no one expects parents with newly diagnosed children to come to this quickly, but it is a healthy option.  I believe it was Abraham Lincoln who said, “People are just as happy as they make up their minds to be”.  We have made up our minds to be happy and Our Kiddo takes the lead as the happiest.

Every month is Autism Awareness Month at our house!

Now What?

I have had an idea for this particular blog post since I decided to write more posts than usual in April, National Autism Awareness Month. I would write about finding adult programs after aging out of public school.  I would write about being careful about guardianship and health insurance (read: MEDICAID) and SSI and all sorts of issues you younger parents haven’t BEGUN to think about, because really, why should you? I would tell you to become political. I would tell you to begin to network (if you haven’t already) with other parents of children with autism (or whatever disability) close in age to your child so when the time comes, you have people who can come together for the good of all of your children. All those things are still valid, in my mind, but the one that strikes me as most important RIGHT NOW is to become more political. And I will tell you truly…it doesn’t matter the political party you belong to, it matters how that party and those running for election views those with disabilities, adults or children.  I do not vote a straight political ticket, I vote for those whose ideas will be best for Kiddo.

Now the time to write this particular blog has come and our family has been hit over the head by our state’s financial stalemate; the giant game of Chicken our governor and the state legislature have been playing since last summer.  We are a state without a budget, and our state has not being paying their bills because of it.  Things (agencies)can only run for so long without money changing hands….it’s so bad, state custodians in our capital can no longer charge cleaning supplies at local hardware stores and have to use their own cash-money to purchase floor cleaner…UNBELIEVABLE!

It affects us and Kiddo because, since January, his program has been reduced from three days a week (we wanted to have flexibility for him) to two days. And I was informed this afternoon, most likely, his particular program will be cut to one day if things don’t change soon.The support staff is not being paid and are quitting or being let go or put on furlough.  No one can blame them for quitting and the good ones find jobs and go; I would! Our state’s new-ish governor has lost many former supporters because of this situation.  Our state’s representatives (the majority of the other political party) have lost many supporters as well.  In the meantime, those who are the most vulnerable are the ones suffering because of their political shenanigans.

Kiddo, as do many adults with autism, thrives on routine and this has been a punch to the gut.  I am sure I will be blogging about trying to make his life as easy and as normal as possible in the months to come. Hubby and I, and Kiddo’s brothers, will have a Meeting of the Minds over the weekend to come up with something to keep him on track.  Just when we think everything is settled…….sigh.

I will leave you with one of my favorite quotes about how to view the treatment of those most vulnerable in our society. It says a lot about my particular state’s government, I am sad to say 😦

“It was once said that the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadows of life, the sick, the needy and the handicapped.” Hubert H. Humphrey

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!

 

A Bucket Full of Pinecones

Last spring and summer was a strange and difficult time for our household, as well as a very happy time.  Our Kiddo had health and behavior problems.  The Youngest  graduated from grad school.  The Middle Boy came home with a master’s degree as well and a desire to go to law school.  The whole family was back home and would be together for the foreseeable future. It was a period of readjusting to each other as well as handling some challenges.

Our house, itself, also had its share of troubles–from a leaking roof to an invasion of raccoons.  Those problems were easier to handle then Our Kiddo’s issues and we quickly resolved the roof leak and captured four raccoons–and two opossums for good measure.  In addition, our wildlife guy–he handled the critters, NOT Kiddo–suggested cutting down or at least trimming a good number of trees and bushes.  We had always liked the “cottage in the woods” look our house had but certainly didn’t want any more raccoons if we could help it.  We decided to cut down all the trees except for the glorious Ponderosa Pine in front of the house–we would have Wally-the-Tree-Guy trim that one in half so the branches wouldn’t be anywhere near the roof.

After Wally cut down the trees, bushes and trimmed the pine tree, we didn’t have much to do to clean up–except for the pine cones.  There were pine cones everywhere, in the ground cover, on the sidewalks, in the flower beds with the hostas and day lilies.  Getting the time to pick them up–the hundreds all over the place–just wasn’t going to happen with Our Kiddo’s problems taking up so much of my time.

During this time, we also played the “what’s wrong with Kiddo” game.  He was down to 112 pounds–why was he losing weight?  Why was he screaming in pain but not being able to tell us where he hurt?  Why was he not the happy guy we love?  From April to August, we tried to get him back on track.  Since he was having behavior problems, it was very difficult to keep him on the schedule he thrived being on.  He didn’t want to do his academics or the art work he so loved to do.  He loved to be outside but we kept him inside a great deal because I didn’t feel we could trust his behavior.  He was able to do some of his envelope stuffing jobs but it was torture to get him to stay on task for the two or three hours it took for each.

I kept a record of his behaviors and we tried to see a pattern somewhere. He had some medical tests, a visit from the paramedics and a trip to the Emergency Room which still did not give us a clear diagnosis.  Then, we finally got an answer. He had bulimia (he was “stimming” by vomiting after eating large amounts of food) and migraines.  Treating those things–the bulimia, behaviorally, and the migraines with diet and when he seemed to be in pain with medication–made a difference.  He seemed to be back on track, weighed 135 pounds and was almost his old self.

This leads me back to the pine cones.  All summer, I worried our postman or a delivery person would trip and fall or step on a pine cone and hurt themselves.  Each time I went outside to weed, I promised myself I would get out to the yard and take care of them.  Every time I watered or got the newspaper, I vowed to do it that weekend.

The last week of August, I knew I had to do something.  I wanted to plant bulbs to take the place of some of the now missing bushes, but I needed to weed in the front yard first.  I knew I had to get the pine cones out as well.  Our Kiddo had been spending more and more time outside, when it wasn’t too hot or wet, and seemed so much better.  I didn’t want him in the house by himself, so I got us each a bottle of water, opened the garage door and out we went.

My plan was to have him sit on the bench on our porch, sipping his water but then I thought perhaps he could pick up some of the pine cones.  The lawn waste bag was next to the garage and I went in to get a bucket.  I motioned for him to come over to me and pointed to the pine cones on the ground.  His first response was to kick the stray pine cones back under the tree, into the ground cover.  I laughed and told him no, he had to put the pine cones into the bucket and picked one up myself to show him.  Immediately, he began to put pine cones in the bucket.  I told him he could sit on the sidewalk if he wanted, throwing pine cones in the bucket while he sat.  I watched him for a while as I weeded the area he had just cleared of pine cones.  Soon, the bucket was filled and he brought it to me.  I showed him how to dump the bucket into the lawn waste bag and he smiled, took the bucket back and began again.

I weeded and he threw pine cones in the bucket, dumped them and started over.  We had been working together for about an hour when I had an especially tough weed to pull.  I put my back into it and turned around to not see Kiddo–where did he go?  Before I could move to look for him, he came strolling out of the garage with a smile on his face and a big handful of gummy bears–his favorite treat for reinforcing good behavior.  He had worked hard and now it was time for a treat–and he got it himself!  We continued for another hour or so and Kiddo got every pine cone we could see.  When we finished, he went again to my secret treat stash on a shelf in the garage for his gummy bears.

When Hubby got home that evening, I showed him what Kiddo had done.  Hubby’s first response was to kick one of the stubborn pine cones we had overlooked into the ground cover, just like his son!  I laughed and showed him the huge bag Kiddo had collected and told him what he had done.  I explained, rather than having to constantly supervise him, he worked independently.  Working independently has always been difficult for him, and yet, after a difficult period in his life, he learned something new, did the job without a lot of supervision and was even able to enjoy what he was doing.  How great was that?  After a rough patch, Our Kiddo showed us, once again, not to count him out.

As the parent of a nonverbal person with autism, I have learned to readjust my dreams for him–but doesn’t he have a right to have dreams for himself? Dreams, perhaps, we’ve never thought about?  After a very difficult time with him, I am again excited to think of other things for him to do, things we’ve overlooked in our quest to find him some meaningful work.  And we’ve tried many, many things.  Perhaps, he knows what he would like to do, we’ve just not hit upon it yet.

Our Kiddo and his peers have a right to their own dreams.  It is our duty as parents, educators and advocates to try to help them turn those dreams into reality.  We must think outside of the box and not be satisfied with what is considered the standard for those with disabilities.  We must try new things, not give up even when it seems we should, and forge on.  Who is to say we won’t find their dreams in a bucket full of pine cones?

Every month is Autism Awareness Month at our house!