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!

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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!

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!

 

One More Thing

It is what has become, a very typical Monday afternoon.  The dishwasher is churning away, there is laundry in the washer and dryer and I am at the kitchen table, typing away on my laptop.  Our Kiddo is somewhere, giggling, and that can’t be good.  He spent the morning working on his academics and started to watch “Toy Story” yet again.  He had lunch and then decided to go into the basement rec room to play with his new set of giant dominoes.

He has been a pill lately–booby trapping my kitchen cabinets by pulling the contents to the very edge of the shelves so when they are opened, stuff falls out on top of you.  Because of this little “trick”, I had a glass kitchen cabinet door shatter just before Christmas and several of my stoneware bowls and plates have broken as they bounced out of the cabinets.  This seems to amuse him and he giggles and laughs when someone is caught by falling Pfaltzgraff.  “ We” are not amused in the least.

He has given himself several eye infections by, well, you don’t want to know.  Let’s just say I don’t have towels of any sort in the boys’ bathroom or powder room now and wash bath towels on a daily basis.  Add this to the fact we don’t have toilet paper out in the open in any of our bathrooms, and ours is not exactly a “NT-friendly” place to go to the bathroom.

We adapt and try to outfox whatever his latest fixation is.  I am having the powder room and the boys’ bathroom cabinets resurfaced and having permanent child locks put in.  I hope this will put an end to some of his bathroom misbehavior and when they finally come to do the work, have a behavior plan ready to be put in place. He wears a pair of trendy looking blank glasses when it looks like the eye is bothering him and that seems to help with his eye infections.

We have a second refrigerator and a set of panty shelves in the garage to hide food we don’t want him to have, or we don’t want him to eat at one sitting.  It seems like I ration his food, but that is really not the case.  He is now on a special diet for his migraines which no longer allows him certain things the rest of us still want to have.  He will drink a gallon of fruit juice at one sitting or a whole case of soda pop if I don’t watch him.  There will be no juice or pop for anyone else, and that is just not fair.  He enjoys food and eating, and even cooking, but needs to eat everything he likes when he sees it instead of waiting.  I buy things he likes in bulk and hide it until I want him to have it.

He is able to live at home, in a “normal” way, and I am grateful he is able to be with us.  There are times when it seems to me this is such a crazy way to live.  We adapt, we outfox, and we change our lives and our diets for him until I think we can’t do anything more.  There are days when I think I can’t do one more thing to adapt for him—that one more thing will push ME over the edge.  And then………I do one more thing.

Every month is Autism Awareness Month at our house!

 

 

Wild Flowers

I love to garden.  I love to plan in the dead of winter. I love to buy seeds and prepare the soil.  I love to go to the nursery to pick out the plants in my plan and even go a little bit by “instinct” some years.  I even love to put the plants in the soil and water them faithfully the first month or so, until they “take” and I can relax and enjoy.

Several years ago, Hubby and I took our family went to a wonderful indoor zoo in Minnesota.  We all became fascinated with their butterfly garden and decided we would try to replicate it in our Midwestern garden.  As the official family gardener, I began to do research as soon as we got home that August. I also learned the plants I would have to include would also attract hummingbirds as well.

We made a list of plants we would want to include, decided where in the garden we locate these plants—and chose the area right under our kitchen window so we could watch—and looked for feeders to entice the butterflies and hummingbirds.  After the lists were made and feeders bought, there was nothing to do but wait for fall and winter to pass so we could begin our plans in the spring.

That first year was truly an experiment. In the past, I had always planted things in my garden I was familiar with, knowing what to expect and when.  With this garden, it was more of a question of following what I had read and waiting and watching.  I was pleased with the cone flowers and bee balm and yarrow and black-eyed-Susans.  It surprised me to have the phlox—plants I have been growing since I was a little girl—not do well and develop powder mold.  It delighted me to have the mini-roses—a type of rose I had not tried before—do very well.  And the daisies–THE DAISIES—took over!

Every year since that first year, I have added to or taken out plants.  My goal is not have to do a thing, once the initial weeding is done in the early spring.  And every year, it is closer to being the fact.  And the butterflies and hummingbirds are coming, more each year.  I have not had good luck with milkweed but my phlox have gradually improved.

The last two years, I have tried something new, something which goes against my planning of this garden and in doing so; I have improved it and have attracted more of those beautiful flying critters.  And it is more breathtaking than ever.  I plan to continue with this strategy.  I decided I wanted more of a wild look, more of a random feel and more of a surprise for ME.  I simply left the plants I had already planted where they were and bought wildflower seed mixes intended to attract butterflies and hummingbirds.  Two years ago, I scattered the seeds in a bare portion of the garden and got some interesting plants such as asters and marigolds and one VERY BIG sunflower.  Last spring, I bought roll out flower mats and cut them in smaller sections and dispersed them in a very unmethodical way.  I had cosmos and lots of asters and more sunflowers than I thought could fit in that area but…I got my surprises last year and I was very happy.  And there was a little bit of a surprise I hadn’t expected as well.  Our entrance in the front of our house is formal, with hostas and daylilies and pots of pansies and geraniums.  And one, lone Queen Anne’s Lace alongside the hostas, looking out of place, but beautiful. Hubby asked me if I wanted it pulled and I kept telling him I liked there.  I don’t know how the Queen Anne’s got there—a seed carried on the wind?—but I liked it where it is.

Our children with autism are like those wildflower seeds. We’re not sure where they came from or how they happened to be with us, as part of our families–but they are part of us. They add their own special beauty to our perfect lives despite our plans. And it’s okay to enjoy their unexpected beauty.

Every month is Autism Awareness Month at our house!