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!

World Autism Awareness Day: An Ordinary Life

If movies and television are to be believed, it would appear most of us who have children with challenges spend their days trying to find a cure, putting that cure—whatever it is—into practice and generally being unselfish and saint-like. Interviews of Celebrity Moms from The View to Ellen prove those truths. In the media, Celebrity Moms leave no stone unturned looking for a cure or an answer, look great, write books about said cure and have their nannies to help them—doesn’t everyone?  It’s an unrealistic view and it doesn’t help anyone in the real world. And in that real world—the world in which you and I live —no one could spend that much time doing what is purported they do without having scads of help.

When Our Kiddo was a young child, most of my days were taken up with ordinary things—islands of busyness with his autism of course—but those day-to-day things which make a life.  When The Middle Boy and The Youngest arrived, I had more of them. While taking him to physicians, I still had diapers to change, laundry to do and bills to pay.  When he was in pre-school, I did my grocery shopping or wrote my Christmas cards and then picked him up. I did research about childhood development while he took afternoon naps or cooked something for dinner, depending of course, if I had had time to go to the library in those days before the internet. I read in bed or when the kids were playing in the park.  I took recycling to the recycling place when I took Kiddo to swimming class. Like moms everywhere, I was a champion multi-task-er.

We can all bustle about but the truth is we are probably not as obsessed as you would think because we can’t be.  It takes energy to raise a child with autism as it does any child and we have to pace ourselves.  Many young parents of kids with autism feel guilty because they are not able to put in the time they think they should. There is a panicky feeling when you can’t seem to do everything you think you should be doing and I certainly understand. We are only human, after all, and only someone with superhuman stamina can live up to the expectations others have about what we should be doing. We can grouse about having to do laundry or any of the sundry tasks life makes you do when you have children—disabled or not–and a home and a family.  I certainly remember being unhappy having to do chores when I could be doing something to help Our Kiddo….but, someone has to do towels.

There is a mood now of how serious autism is.  We must be serious and single minded and self-sacrificing or must not understand the gravity of it. How can you get your oil changed or go to the dentist…your child has autism!  Autism is “trendy” now and I have come upon many young parents resentful of me, of our family, of our choices because they don’t think we did enough.  By that I mean, they think things should be easier for them now because we paved the way.  Our Kiddo should have been cured and research should have been in place so their child didn’t ever have to have autism. We did pave the way, things are better and autism is more in the news by what we did, but it doesn’t seem to be enough.  They wanted us to do more. What they fail to realize is they are in the same place we were 30 or so years ago, having to advocate for our child as well as raise him!

Our Kiddo isn’t cured but we have a good life—an ordinary life–in spite of his autism. What more do people want?

Autism awareness month is every month at our house!

Coming Out of The Frig for the Month of April

I have a child who has autism. I suppose he isn’t really a child, but a man. I’ll let you in on a secret–having a child with autism is not the end of the world.  It is difficult, that’s for sure, but loving Our Kiddo and doing the best we can for him has been the easy part. He’s a happy guy and we are grateful, knowing our work with him has paid off for the most part. The really hard part of the whole autism experience has been many don’t understand and don’t WANT to understand autism–unless it fits in with their own version. Some have their own agendas and no interest in helping or understanding those of us on the autism front lines. Let me explain what I mean.

The “Refrigerator Mother” theory was the misguided notion of Bruno Bettelheim, one of the early autism “experts” who many believed had the answers for this very puzzling and misunderstood condition. The real tragedy of autism, the difficult part to grasp to those not familiar with this disability or its ramifications, is the blame assigned to the mothers and families of these children.

Bettelheim believed, to simplify the theory a bit, the reason certain young children have problems with communication and forming normal human attachments and relationships was the coldness and lack of nurturing of their own mothers.  Their mothers, he believed, were cold and unable to love their child for a variety of reasons including resentment for having a child.  A mother could seem perfectly nurturing and warm to the outsider, but if her child developed these autistic symptoms, she was really cold and unable to mother her child properly.  We were dubbed, “Refrigerator Mothers” along the way. The theory has been disproved long ago but the fallout still lingers in many ways in the community at large, and surprisingly, in the autism community itself. Today, I’m coming out of my Frigidaire to tell you the real story of autism, the story most don’t know and many are reluctant to tell.

Of course, everyone claims to know Bettelheim was wrong and yet…. if we really did our homework, researched hard enough, sacrificed enough and tried more therapies our kids would be cured.  Since they’re not cured, it’s our fault.  As amazing as it sounds to the outsider, instead of rallying ‘round the young family in their time of need, it is considered just fine to question their motives or throw accusations of neglect at the parent of someone with autism.  We are expected to take it…we have an imperfect child and these well-meaning people are just trying to help.  Deep down, folks still think we caused our child’s autism.  And it isn’t just a fluke or an isolated, flaky neighbor.  It is professionals, parents of other people with autism and your own mother-in-law! Though it is easy to blame, it is nothing we did or did not do that caused our child’s problems; it is autism, and not poor parenting.  When we need the reassurance of those we love and professionals we put our trust in, our parenting and love for our children are called into question.  There is much estrangement in the families of those with autism because it is inconceivable to many, especially in the older generation; a disability such as this can just happen with no one understanding why.  Much time and energy is still spent on blaming the parents, especially the mother.

The blame begins almost from the time we suspect something is wrong with our child.  There is denial on our parts, quite normally, as we decide what to do.  Someone, usually a family member, suggests we are not talking to our child enough or perhaps talking too much.  The accusations of neglect swirl around us and we bring the child in for a first evaluation.  A professional confirms we should be talking more/less and making the child do the communicating. Don’t give him what he wants until he TELLS you what he wants, we are told.  This happened with our child and I can say with authority and all my experience in the autism community, it still happens today.  Even professionals heap the blame on at first–we must be doing something to cause our child’s lack of speech or useful language or odd behaviors.

As we trundle along on the autism road, we try everything we can to help our child.  At first, we want a cure, something to make our child “normal”.  We try things that are standard; we try things that are not so standard.  And we listen to everyone–our families, neighbors and the checkout girl–tell us what to do.  We spend hours and days in a darkened bathroom because it echoes and it is supposed to help our child focus on us and communicating their needs.  We do intensive one on one therapy.  We take the child to speech therapy as many days a week as we can afford and he is taught sign language. Even though he has the ability to hear and make sounds we are told some communication is better than no communication. And we are questioned about the wisdom of sign language by well-meaning family members.  We try other things, like vitamins and other supplements and spend money we don’t have on things we are not sure of.  We eliminate dairy and wheat and eggs and fruit and meat and anything that tastes good and our child won’t eat anything we give him.  When nothing seems to work, we are told we didn’t try the diet/vitamins/darkened bathroom long enough.  And when our families call and ask “is he talking yet?” and we tell them “no”, we are blamed for not trying hard enough.  And we are called selfish for having other children.

At a certain point, we forget about “normal”, and just want “better”.  We fight with the school district.  We fight with the therapists.  We fight with physicians and insurance companies.  We attend workshops, sib shops and autism support groups and discover our experiences are no different from other parents.  We make lifelong friends and stop telling our families about our child’s treatment program.  Every time autism is in the news, we hear about it, and have folders full of articles we have been emailed.  We don’t argue anymore, we just nod our heads and leave the room as soon as possible.  We deal with our child’s autism “melt downs” and challenging behaviors such as feces smearing and not sleeping through the night for days on end.  Our siblings tell us our child seems good and having a kid with autism is no big deal, while their children in the next room talk about “retards” at the top of their lungs.  If we say anything, it makes trouble, so we don’t and die a little inside.  And we are blamed for giving up.

Our autism community is divided because no one knows what causes autism but everyone has their theories.  And there are factions who believe their theory is the only correct one.  If yours doesn’t jive with someone else’s, *they* must be wrong.  The ones who believe autism has an environmental cause pooh-pooh those who believe it to be genetic.  Those who are in the genetic camp distrust those who believe it is caused by vaccination injury……and so on and so on.  We constantly question other parents motives and commitment to their child because of this lack of trust fostered, whether we realize it or not, by Dr. Bettelheim.  We are blamed for our children’s autism because of him and that’s just not fair. Until we, the autism community, understand this, we will continue to have autism tragedies in the news when parents feel hopeless, not knowing where to turn or who to turn to without being judged. It is not the same in other disability communities. The friends I have who have children with Downs Syndrome have such a galvanized community–the same goes for the Cystic Fibrosis community or any number of other childhood disabilities and illnesses.  We are always at each other’s throats and it the reason, I truly believe, we don’t have as many services and supports as the others.

My son is a charming, well-mannered person of whom we are very proud. There has been no miracle cure for him nor are there any crusaders to take up his cause.  He isn’t making baskets for his high school’s basketball team and he is not suddenly speaking after some quirky therapy.  We began interventions at 27 months—early for the 1980s—and he had intensive speech therapy, sensory therapy and behavior therapy and it’s been hard work to get him this far. He makes progress, day by day, month by month, and year by year and sometimes regresses.  We try things and abandon what does not work and forge ahead, just as we have since his diagnosis.  He has improved but he is not cured.  He is a good person, a happy person with skills he worked very long to master. He’s proud of himself as well. We think that’s good enough for right now.  No matter what other people think we should or should not have done.

Want some ice?

Autism awareness month is every month at our house!

Clearing the Air Before National Autism Awareness Month

April is National Autism Awareness Month and I plan to do a lot more blogging here during those 30 days.  It’s also a busy month for me, with many professional commitments, personal commitments and even family commitments clogging up my time. But I think it’s important to create awareness and I am making the commitment this year to take out all the stops, just do it and blog at least 15 times on autism awareness. It’s about every other day or so…..it’s a reasonable goal and I think I can do it, fingers crossed!

But first, I want to clear the air and get a few things off my chest. Especially because there are number of people out there…perhaps you know a few……who think there is no need for Autism Awareness or a special month for Autism Awareness and heaven forbid, no need for a World Autism Day (April 2, in case you didn’t know)! These are the folks who love to take the time to remind me how lucky I am and how autism is all a scam. Their lives are so much more important than yours and mine, they feel much more deeply, ya know. My late Mother used to say there were always people around who played a giant game of *can you top this*. Autism is never *bad* enough for these guys and whatever is happening with them is ten times worse!

So pull up a chair, get out the popcorn and watch Your Autism Cuppa vent for all she’s worth!

To My Mother-In-Law: I know you love Our Kiddo, I really do, and I know you want to help.  But having a son with Dyslexia is NOT the same as having a child with autism. Your dreams for F had to change but he was able to have a job (in construction, not the profession you wanted for him)and a family and Kiddo will never be able to have any of that. I long ago came to grips with it, why can’t you? And why do you have to keep nagging me about it?

To My Sister G:  I am not lazy because I chose not to home school our boys; it was a decision we made and does not mean we were going along with the crowd. Having a child with autism, we wanted  professionals working with him.  We moved where we finally did because of the excellent, nationally recognized special ed program as well as gifted programs for The Middle Boy and The Youngest.  I had regular bedtimes for my kids not because I was the *Nazi Mother* you thought me to be, but because The Kiddo needed structure. Three little kids screaming for ice cream at 2 am, like yours did, seemed stupid.  And no, Kiddo’s hairline is NOT CONSIDERED LOW and it does NOT mean he’s retarded, it just means he has his Father’s hair.

To My Sister-In-Law with the Perfect Kids: Your kids always needed to be the center of attention. They did tricks, imitated television commercials, elbowed  and pushed each other down when it was time for the yearly Easter Egg Hunt and were generally loud. They turned out to be loud adults who think nothing of screaming across the table at a formal dinner and who have inflated opinions of their own self worth.  You saw no need to explain The Kiddo or autism at any time while you were raising them and as a result, your children and now your grandchildren have no understanding of The Kiddo, his brothers and our family. Autism is an inconvenience to you so you see no need to invite The Kiddo to family weddings, Christenings or housewarmings. Even holidays when you are hosting you discourage us bringing him….Way to promote Family, folks!  Autism is not so bad, you say.  If it isn’t so bad, why can’t the Kiddo come to your flippin’ barbecue? And does everyone have to call everyone else a *retard*?

To My New Neighbor: When you moved in to our favorite neighbor’s house, we looked forward to getting to know you.  Linda* (not her name) understood Our Kiddo from the beginning and when you moved into her house, we wanted you to understand too. To welcome you to the neighborhood, I brought blueberry muffins and a children’s book about autism over so you could explain to your kids, on your own time, about Kiddo.  So when the police showed up to ask us what was happening, I had to wonder….did you even listen to a word I said about his severe migraines and his screaming in pain?  We are very lucky the police know Kiddo and know about his autism and know about his health issues with migraines (he has passed out in pain several times and we’ve called an ambulance, so they really do know).  What I don’t understand is why it’s okay for your teenagers to be dibbling their damn basketballs on your driveway, under out bedroom window, at 1 am on a Wednesday night. Next time, it might be time for us to call the police!

To Baby Sister K: When you told me you were tired of hearing about autism, I wanted to applaud. You see, I am tired of talking about autism. I am tired of having to explain, yet again, why we have a toilet paper dispenser in our powder room.  I am tired of explaining his migraine diet and why we are doing it and not the other autism diets. And we’ve been doing it since 2008, can’t people remember and do they have to make me feel like I’m taking some sort of consistency test ? I am tired of clarifying, again, what a respite worker is (a babysitter for an adult, often with specialized training working with the disabled) and explaining the day program we’ve had to cobble together because of our state’s piss poor services for adults with disabilities. And when you, with a straight face, complain we are not holding up our obligations to your aging father, I want to laugh in your face; we send money and that’s good enough for right now.  When I don’t have to explain WHY we can’t do something or you take my word for it we would, if we could, but we can’t, that’s when I’ll make the effort to help more. Until then, I’ll be talking about autism.

To My College Friend L: I’m sorry you were not able to get pregnant.  I am sorry you were married to a string of losers who took the best years of your life.   After your fertility doctor told you to forget about any sort of pregnancy, you seemed to think the best thing you could  do after was to call me and scream. You screamed that it was not fair I had children and you did not. You screamed that I didn’t deserve my boys. You screamed I was a lousy mother and a terrible person. When I reminded you Kiddo has autism and being a mother isn’t all it’s cracked up to be sometimes, you screamed back you could have cured him by being much more awesome than me. Really? Are we 21-ish and still making mac & cheese in a hotpot?  The truth is, L, you aren’t mother material, even if your child was perfect. You are selfish and self-centered and only look at things from your own point of view.  And you’re inflexible.  Having children means thinking about another person and putting them and their needs first even if that means putting yourself last.  And being the Mom of someone with autism can mean putting your life on hold for years while you get them the right sort of help and in the right sort of programs.  Sorry, but that’s not you, honey.

To Hubby’s Aunt Felice: When you told me I was selfish for having two more children after Our Kiddo, I wanted to laugh.  Selfish for having two more children?  When I was expecting The Middle Boy, we were only just beginning to think something could be wrong, so why would we not want to have another child?  In the midst of the diagnosis process in the mid 1980s, Hubby and I decided to get pregnant with The Youngest and stay with our plan of having three children, no matter what. And are happy we did.  As far as being selfish is concerned, you have nine children.  I would never venture to say you were selfish for having nine children but perhaps you feel you can say it to me simply because Our Kiddo has autism. When you have a child with autism, people feel they can say anything they want, no matter how hurtful.  But really, nine children? And you call me selfish?

Autism awareness month is every month at our house!

Catching Up With The In-Laws

I called My Mother-In-Law this morning. I meant to find out what she’s doing for Easter (and invite her if she didn’t already have plans), see how her sister (and Hubby’s favorite Aunt) is doing after a cancer diagnosis (chemo and she has a new BOYFRIEND at the age of 83!) and to catch up with family news. I did, indeed, ask those things.  But I spent the first ten minutes of the conversation crying and sobbing because of something My Mother-In-Law said.

In years past, I would have been crying because she was being thoughtless. In years past, she WOULD have been being thoughtless, but not this morning. This morning, the second thing out of her mouth was to ask how The Kiddo’s birthday had been. She had sent The Kiddo a birthday card, as did my Father, but the rest of the extend family did not acknowledge his birthday in any way.  They never do, so why I expected this year to be different, I don’t know. But when she asked, it just hit me how much The Kiddo is ignored in the greater extended family and how really painful it is.

In mid February, I blogged about February Funk and explained how I’ve managed to stay somewhat sane, despite parenting someone with autism for over thirty years. The abridged version is……I don’t feel sorry for myself (i.e. no *Pity Party*) except for one day a year, The Kiddo’s Birthday. Then I cry, do a bit of whining and do birthday-type things with The Kiddo, The Middle Boy and The Youngest along with Hubby and move on, get over it and that’s usually that. But when My Mother-In-Law mentioned his birthday this morning, I lost it.  The five of us have what we’ve come to call *Birthday Row*, all five of our birthdays come one a month, starting with mine in October, for five months. We have birthday traditions which have evolved as they have gotten older and reached adulthood. We laugh, go out to dinner,  have birthday cake (chosen by the B-day person) and presents when we get home. We’re happy with our celebrations and with our family…and those who love us.

I told My Mother-In-Law I so appreciated her sending a card (and how much it meant to me) and then, the waterworks took over.  I  blubbered that The Kiddo is a real person. I sobbed that he’s talented and smart in his own way.  I cried that he’s a good person, a kind person, and if his own aunts and uncles and cousins (who have spent over thirty Thanksgivings and Christmases and Easters, not to mention 4th of Julys with him) can’t seem to treat him and see him as a person, what was the point of our family attending holidays with the whole family?  She asked me what I meant, and I told her he is ignored when we bring him to family functions. I told her many of his cousins use the term *Retard*…not referring to him (at least I THINK it’s not)….but using the *R*word to refer to those deemed, perhaps, stupid or *not cool* or some such. It’s really an insult to The Kiddo and all those with intellectual challenges. These folks don’t edit their observations in front of The Kiddo or his brothers or even their aunt and uncle (Hubby and Me). It’s hurtful.  I told her her next-oldest grandson brags he’s her first grandchild and when I reminded him The Kiddo is, he rolled his eyes and said, “you know what I mean.” My Mother-In-Law was not pleased about his comment, let me tell you! I suspect Cousin T said this because his whole family is uncomfortable with autism or any  illness  indicating some sort of weakness or deficiency. Quite ironic since one of his sisters is a social worker and another is a special ed teacher…you wouldn’t know it from their behavior to our family though.

I had always had close relationship with my own cousins, despite living across the country. We gave each other small birthday gifts or sent a card or somehow connected in those days before email and texting.  I wanted the same kind of relationship with their cousins for my own sons and started, beginning with baby gifts, sending something for birthdays. I really didn’t expect reciprocation for my boys but I did expect the occasional birthday card.  I did expect some sort of thank you.  They could have called, if their mother didn’t want to nag them to write a thank-you note.  They could have told me they liked what I sent them for their birthdays when we saw each other at holidays or said something to one of The Boys or Hubby (who is exactly their Blood Uncle) but they did not. Still, I thought, it’s good for my kids to help choose and purchase gifts for their cousins and we made a special shopping trip, twice a year,  to the mall.  I always sent gifts until one year The Middle Boy wanted to know what I thought his aunt and uncle would be getting HIM for HIS birthday…even though they had never send him so much as a birthday postcard.  I vamped and said it was sure to be something wonderful and  bought him something myself, sent it to our house and then made him write a thank-you note and did the same thing for The Youngest and The Kiddo that year. It was so sad to think my child was not thought about after he spent an hour picking out *just the right* Hot Wheels for his younger cousin.  After making sure I remembered all those children’s birthdays that year, I stopped sending gifts. Stopped. And that’s when all the nastiness and *R* word use began. All that hurt inflicted because of Matchbook cars and barrettes.

Having to watch my first born son, whom I wanted and loved from the very beginning, being treated as a non-person is probably one of the biggest sorrows of my life. And watching his brothers having to deal with being told our family isn’t whole or healthy or *good enough* is an equal sorrow. My Mother-In-Law asked what she could do this morning.  I told her to not let the family get away with excluding The Kiddo or saying unkind things to Hubby or Me or The Middle Boy or The Youngest. She promised me she would.  In a moment of weakness, I either made things better or destroyed a relationship with my Hubby’s sibling and their family. Either way, I don’t care at this point. But I did care; I did care A LOT.