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!

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!

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.