Sinking

This post isn't about Ben.  It's about me.

Something is happening to me that I don't understand.  Emotionally, I am sinking further and further into some kind of unfamiliar dark and gloomy pit that I can't seem to claw my way out of.  To say I feel sad is an understatement of huge proportions.  I cry.  A lot.  I don't want to get out of bed in the morning.  I get angry quickly and feel horrible about my anger afterward, even if I had the right to feel angry.  I snap at people who don't deserve it and get way more upset about little things than I should.  I get a tight feeling in my chest and I feel absolutely helpless and hopeless sometimes.  And right now, just trying to write about it and explain it, I am crying so much I can barely see the screen.

And I have no idea what to do about it.

A very supportive little FB group I'm in has mentioned that every mom of a kid with Autism suffers from some kind of depression.  That statement completely caught me off guard and I found myself holding my breath as I re-read it.

See, I don't get "depression".  I am Danica, and I am too strong for that kind of "crap".  I deal with things and buckle down and take care of business and move on and solve the problems and figure it out, even if that means cutting people out and off or accepting that sometimes things and certain people just suck and I have to move past them.

At least, that's what I thought I did.

Right now I'm too weepy to do any kind of buckling down or moving past.

This is the point where I need to clarify that I love my son more than anything and feel blessed to have him in my life.  I love his smiles and laughter, his funny ways, his sense of humor, his imagination, his loving little spirit, his determination, and the fact that I am the one he still needs and snuggles with when the going gets tough for him.  He is my most important purpose and priority and he is totally worth the effort, stress, and anxiety that comes along with an Autism diagnosis.  I'm worried about not being a good enough parent, though.  But that's always a worry.

I also feel I need to reassure everyone that you will not see me in the newspaper headlines.  I will not do anything crazy or horrible, and  no one will call you to interview you about whether or not you knew I was off my rocker.  I promise.  I'm not so bad off that I can't see this happening and that I don't know something is up.

I have been steeling myself against the possibility that it may be more than feeling a little blue and that I may need to mention this to my doctor, should I ever get a chance to do that.  I will surely have another sinus infection soon and that may give me the opportunity.  It doesn't sit well with me, though.  Not that I judge others for needing meds or help, but I simply thought I didn't have "that problem."  I'm not supposed to have it.  I don't have time to have it, and I certainly don't want to have it.  I am learning, though, that I am not always so strong as I'd like to be.

Worth a Thousand Words

Yesterday, Ben's daycare sent home a photo that made me stop in my tracks, and if I need to express any one particular thing about Autism, this picture summarizes it perfectly.  It shows so much more about how Autism affects my child than I could ever effectively write or say.

Unfortunately, I can't share it with you.  There are other children in the picture whose parents I don't know, and I do not feel comfortable showing their photos here, because I would be a bit ticked if perfect strangers put my kid on their blog.  You know, do unto others and stuff.  And I can't crop them out because they are crucial elements in the picture.  Without them, the difference isn't there.  So, we are all just going to have to make do with whatever words I can scrounge up to describe a picture that most accurately illustrates Autism that I can't show you but need to share with you.  Irony, anyone?  Or is it not ironic, but just confusing?

At any rate, imagine in your mind fourteen five-year-olds dressed in florescent daycare shirts all posed around an inflatable pumpkin at the pumpkin patch.  They have been told that this picture is a souvenir of their field trip for their parents, and everybody stop picking your nose and say cheese.  Thirteen of those children are smiling brightly, showing all their teeth.  One of those children has that "Who farted?" expression.

Then there is Ben.  Ben is in the middle of everything, wearing the same shirt, sitting right in front of the inflatable pumpkin, with kids on either side of him and slightly in front.  He is not looking at the camera.  He is sitting sideways.  He is not looking at anyone but is instead contemplating something he is holding in his hand, perhaps a leaf or piece of hay.

He is with the others but separate from them, all at the same time.  He is in his own world right in the middle of theirs.

This is what Autism does.  This is what Autism looks like, at least from my experience.

Actually, there was a time a few years ago when he wouldn't have even been in the picture.   He wouldn't have been able to tolerate sitting so close to other kids, though he has always been affectionate with us and has sat with us.  This shows improvement, and I am thankful for it, but the difference and the struggle are so evident in this picture that I tear up when I see it.

What I hope you will take away from this little experience of mine is that Ben doesn't want to be alone, but because of this syndrome, he just is.  He is separate, apart, and different, but if someone takes the time to make the effort required to enter his world, he is well worth it.  I promise.

Please reach out to children with Autism and please teach your children to reach out to children with Autism or any kind of difference, instead of just ridiculing or ignoring them.  They are worth it.  I promise.

Back to the Grind

Summer time is pretty sweet and laid-back around here.  Ben and I fall into a routine of sleeping later, playing, the park, the DH Discovery Center, the zoo, feeding ducks, and splashing in the kiddie pool.  We did do extra therapy this summer (two sessions of OT, one of ST, and one of PT each week), and we do keep a routine so that he won't get upset and feel distressed, but it is nothing like his school routine.

Ben's school routine this year consists of Daddy driving him to school, riding the bus at 1:30 to his daycare, and then one of us picking him up from daycare.  Wednesdays include OT.  He also attends just daycare for a week before school starts while I am at in-service.  Getting back into the routine has always been difficult for him, even when he didn't have as many transitions as he does now, and the first few weeks had always required us to pry him off of the floor, kicking and screaming, and drag him out of the door each morning, only to have to leave him at school or daycare while he sobbed, screamed, and took off his shoes.  After a few weeks, he calmed down at home but then would still have the fit at school.  It was painful at best, and we all dreaded Ben's morning transition.

But this year has been different!  Thank goodness!  He handled the first week of daycare like a champ, no fits and no problems!  He was clingy with his dad the first day of school, but handled it like a champ as well.  We are now officially three weeks into school, and mornings have been very smooth, except for an occasional clothes issue.  I never imagined it could go this well.

Was it magic?  Did I find a magical fairy wand to wave at Ben to make mornings better for him?  Unfortunately, no.  If I had a magical wand, everyone would know because of all of the frogs suddenly hopping around.  We did, however, find some tools and tricks of the trade that have made school and morning transitions much easier for Ben.

After Ben was diagnosed through the school district (after our original private diagnosis), they enrolled us in their Parent In-Home Training program, and we were blessed with visits from a wonderful PPCD teacher, Ms. D, who introduced us to social stories.  Social stories are little home-made books that show Ben doing something, one step at a time.  Each page will have a picture taken of Ben doing one step of a process that is described in a single sentence.  They can be spiral bound or put together with rings from an office supply store.  We have separate ones for pottying, hand-washing, getting dressed, picking up toys, going to school, going to daycare, eating in the cafeteria, etc. 

Want to know a secret?  At first, I thought this sweet lady was crazy.  I could not see how this was going to help my son.  Despite the fact than Ben loves books, I just could not buy into the idea that he needed a book to show him how to potty or go to the cafeteria.   We had books about pottying, after all.  "The Potty Train", "The Potty Book for Boys", "Potty Time", etc, and they had not done a bit of good, so I certainly did not believe these little construction paper photo books were going to make a bit of difference for Ben.

Until they did.  Because they really, really did.  Being able to see himself doing the scary and/or confusing process  step by step has made a world of difference for him.  His self-help is gradually improving, and it has helped him with going back to school and daycare and falling back into that routine.

Another tool we are using (that I was also skeptical about) are picture schedules.  Ben's teacher uses them at school to help the students negotiate their routines and to teach them how to transition from one center and activity to another.  Our picture schedule at home consists of a piece of laminated card stock with self-stick Velcro on it.  Picture symbols representing pieces of Ben's day have pieces of opposite Velcro so they can be easily put on and removed from the schedule.  We have generic symbols for pottying, dressing, eating, a school bus, picking up toys, etc, but we also have little photographs of me, his dad, my parents, school, daycare, our vehicles, and his therapy clinic.  Each evening, Ben and I sit down together and arrange his picture schedule for the following day, and then we go over it together the next morning.  He also likes to look at it with his dad when he comes to take him to school.  It's not a magic wand, but it does help him understand and deal with the parts of his day better than I ever imagined it would.

We also visited his daycare a week before he returned to meet his new teacher and see his new classroom, and also to take pictures for a social story.  And we attended the meet and greet at his school to visit his teacher (he will have wonderful Mrs. S. again just like last year when he began this school in January).  Mrs. S had readied his cubby and desk so that he could see them.  Last May, she had also sent home a social story about his new, longer school day and the additional situations of lunch in the cafeteria and the routine that will follow, and she really deserves a great deal of credit for how well Ben handles school now.  I believe her classroom is a much safer and more comfortable environment for him than his old classroom at his former school, and I do believe that is part of the reason he does not fight it or dread it so much.  We are really fortunate to have her as Ben's PPCD teacher.

I also involved Ben in choosing his backpack, lunchbox, and school supplies, and we had daily conversations about returning to school, as well as reading children's books about going to school (Berenstain Bears, Curious George, "The Kissing Hand", and a new Skippyjon Jones story "Class Action") and, of course, the helpful social stories.

I am very proud of Ben and the growth he is showing this year, and I am sooooooo happy that he is no longer so upset by school that he needs to fight against going.  I am learning to try tools before being skeptical of them, because you just never know what will help your child until you try it.  But if you see a magic wand lying around somewhere, let me know.  Ya know, just in case someone needs to be turned into a frog.

A Questioning Boy

Ben is asking questions!

"What does a squirrel say?"

"What are you going to do after I go to sleep?  Are you going to play?"

"What song is that?"

"Where are we going?"

"What is a solar system?"

"What are we going to do today?"

"Where is Daddy?"

"What are you cooking for me?"

"What is that?"  (Which started out as, "What that is?" and was so cute I could hardly stand it.)

And he always asks these questions (and many more) with this look on his face that is a mixture of curiosity and amusement, like "A ha!  I now have a way of obtaining information from you!  Over and over again!"

Why is this significant, since 'all' kids ask questions? 

Because I was afraid he wouldn't.  Ever.  I have mentioned before that Ben didn't talk until he was 3&1/2 and that, when he began talking, there was an explosion of words and sentences.  We went from no verbal communication to a ton of it in just a month.  But there were no questions.  There were lots of words and sentences, but even when he wanted something he would say, "I need juice," for example.  We modeled questions and tried to prompt him to say, "May I please have some juice?" and sometimes he would phrase it that way to ensure he got what he wanted, but he did not form questions on his own until now, almost 2 years later.

I was so thrilled he was talking that I didn't give this issue much thought until his diagnosis last summer, but when I began to read up on the subject I discovered that many children on the spectrum never ask questions.  Often, they are so locked in their own world that they don't ever realize or become aware that they can ask questions to get information, and sometimes they aren't even aware of and connected to others enough to want information from them.  This is when I began to worry about Ben's lack of questioning.  I longed to hear the endless string of "Why?" questions that cause some parents to complain.  I longed for my child to be curious enough to reach out for answers, and I was afraid he would not be.  Ben is fairly high-functioning, but sometimes the Autism slaps me in the face.  Sometimes, it's visible and undeniable.  He didn't ask questions when other kids his age were full of them, and that was clear and alarming.

This question-asking, as simple as it may seem, gives me a huge amount of hope that he will NOT be limited by this syndrome.  It gives me hope that he is connected to other people and that he is present and aware here in the world with the rest of us.  He is reaching out to others for information that he wants, and he makes eye contact when he does it.  He now has the ability to reach into the world and connect to it and to everyone else, and that reassures me so much there aren't words to describe it or measure it.  A simple question from him gives me hope that he will be able to complete his education and go to college and have a career he loves and sustain relationships with others.  It gives me hope that this is the tip of the iceberg and that his communication skills will continue to flourish.

He is not yet asking all of those "Why?" questions, but that may very well be next.  I welcome them and look forward to answering every single one without complaint.

An Act of Kindness

A few months ago, I posted about a very large, messy accident Ben had involving a Pacific Ocean of poop in one half of my home and then, a while after that, I posted about our long adventure with potty training.  I briefly mentioned borrowing my parents' carpet cleaner to cope with the messes this adventure often left on the carpet.  Today, out of nowhere, I was given the gift of my very own fancy, powerful, glorious, brand-new carpet cleaner.

The most surprising part of this gift is that it did not come from my doting parents or my generous extended family who often thinks of us and gives us nice gifts (like Ben's new black ocarina that he is ever so fond of--thanks Aunt Judy!), but from someone who has never met me or Ben.  This person knew my mom in high school and reads my blog about Ben, and she very thoughtfully and sweetly decided to give me a carpet cleaner that she had bought but never used and had never even removed from the box. 

I never know when Ben will have an accident.  They generally happen at an inopportune time, but he can't  help that.  He is getting better about potty training, but those accidents still happen from time to time.  He is also still struggling with his motor skills, which results in messes as he spills things.  Once, before he became verbal and couldn't communicate his wants and needs with words, he pulled a large pitcher of iced tea from the fridge to show me he wanted some and accidentally dumped the whole thing on the carpet in the dining room one hour before his birthday party.  And, of course, there was also the incident of the perfectly straight black crayon lines.

My parents have always willingly loaned me their carpet cleaner and have allowed me to hold it hostage keep it for long periods of time, but now they can keep theirs and I will have one whenever I need it for crayon, iced tea, grape juice, spaghetti sauce, poop, chocolate Carnation Instant Breakfast, and whatever else might happen to land on the carpet.

To the person who gave me this gift:  thank you for helping to make my life easier and taking some of the stress out of helping Ben with his struggles.  I appreciate your thoughtfulness and generosity more than I can express, and I am very touched that you thought to give me such a big gift that will help so much around here.  Thank you for thinking of us, and thank you for your kindness.

"Different, not less."

Since it is summer break, I occasionally have a bit of this enigma some people call spare time, and in order to spend some of this glorious spare time, Ben's dad rented the movie Temple Grandin and we finally got to watch it.  I have read articles by Temple Grandin and watched her speeches on line, but I had not had the chance to see the movie until now.

I am not a professional movie reviewer, and my taste in movies is probably questionable at best, but you should really see it if you haven't.  You really, really should.

If you aren't familiar with Temple Grandin, she is a woman with Autism whose mother was told to institutionalize her when she was diagnosed at the age of four in the 1950's.  The doctor called it "infantile schizophrenia" (which really made me angry) and thought that children with it could never talk or take care of themselves or learn.  Her mother (played by Julia Ormond in the movie; Claire Danes plays Temple) refused to follow this advice, worked tirelessly with her on speech, manners, rules, and many other issues, and had Temple attend a boarding school and then college.  Temple is very successful; she has earned her PhD in animal science and is a professor at Colorado State and has famously redesigned slaughter houses to create safe, humane, environments for the animals that are also more efficient and has written many books about that and also about Autism, including The Way I See It.  She is an inspiration in herself, but this movie is really something.

I cannot get over how well it was done, and how thoughtfully she is portrayed, both as an awesomely successful woman and as a person with Autism.  It shows her social awkwardness, her differences from other people, the bullying and teasing she was subjected to for being a "freak," and the way other people couldn't understand her interests and focus, but it also showed how she thinks in pictures by presenting a series of photographs to represent that and it amplified different sounds to show what would be uncomfortable and frightening to her.  It showed her sensory issues, like the "hug machine" she designed and built for herself because she needed the pressure of a hug to calm herself but couldn't tolerate human touch, and also her inability to eat food with texture, other than that of yogurt and jello.

It also showed how much of a difference small gestures of kindness by others made to her life.

I spent a large part of the movie comparing her to Ben, for some reason, perhaps because I am constantly trying to understand the differences in symptoms and gauge Ben's.  There were a lot of differences because he is very high-functioning and she is more classically Autistic, but there were a great number of similarities, too: the intense focus and inability to be side tracked, the lack of understanding of social cues, and the need for pressure, which Ben satisfies with back rubs, a bean bag chair, or his weighted blanket.  But I absolutely began to cry during the scene of the movie where she leaned toward her mother without touching her so her mother could hug her.

Ben does this.  Not with me or his dad or his grandparents, but he definitely does it with people he doesn't know as well or see as often.  Ben has always been affectionate and loving, always, but with less familiar people, he is more guarded in many ways.  He also gives what we call "head kisses."  If you ask him for a kiss and you are not immediate family, he will most likely lean toward you with his head down so that you may kiss the top of his head.  He complies, but in a way that is comfortable for him.  I don't know why that scene made me cry, maybe because it was at the end of an emotional movie, or maybe because it reminded me so much of my sweet Ben, but it did make me cry.  The movie as a whole gave me a great deal of hope for Benjamin.

See the movie.  It's incredibly well done, Claire Danes does an outstanding job, and it is a very helpful tool for spreading some awareness that people with Autism are different, but definitely not less, than others.

The Long and the Short of It

Hi!  I haven't been here in awhile, despite my good intentions.  It's just that when school let out I lost my motivation.  I'm trying to find it, but I lack the motivation needed to do so. Ha ha.  Ha.  I see Canada and Russia have visited this little blog quite a bit.  Other countries too, but not as much as Canada and Russia, so hello there to them. 

You know how when you find out you are going to be a parent, you read all of those books about all of the things you should worry about when you try to raise your child?  And you know how those books tell you there are BILLIONS of things to worry about?  Like what might happen to your child's brain if you don't nurse them until they are old enough to tell you they would prefer a juice box, the two hundred kinds of harmful plastic that everything in the world is made with yet will give your child cancer if they use a sippy cup made with it, and the lead paint that used to be on your window sills but was scraped off twenty years ago?  Come to find out, they managed to leave out some things, like SHORT SLEEVE PHOBIA.

Sleeves, specifically short ones, caused quite a ruckus around here for quite awhile.  Ben was used to wearing long ones, so when the Panhandle weather decided to swing warm, he did not want to wear short ones AT ALL, and then just when I got him sort of used to the idea of short sleeves, the weather would swing back to cold and he would get to wear long ones again.  That may not seem like much of an issue, but trying to put a short-sleeved shirt on that child made him scream, cry, and wrench the shirt off of himself as if it had a prickly thorn lining.  And this didn't happen once or twice, but every day for about a month.

Last spring, we had one instance of not wanting short sleeves and then he got over it.  Last fall, we had a few mild instances of not wanting long sleeves and then he got over it.  I was completely unprepared for the battle that short sleeves turned into this spring, and also the emotional wretchedness that came along with it.

I knew this was because of the sensory issues that plague most children on the spectrum, and I knew that to Ben, the sleeves were scary and/or uncomfortable because they were different from what he had been wearing for several months.  I don't want my child to be alarmed, uncomfortable, or scared, but at the same time, I don't want him to get used to avoiding uncomfortable things completely.  Lots of things are going to be uncomfortable to him, and lots of new things are going to be scary, but I was faced with this quandary that parents of children with Autism end up in: give in or push the issue?

I kind of wanted to give in.  Maybe Ben could just always wear long sleeves, even though the temperature does hit over 100 here in June.  Maybe being too hot would make him want short sleeves.  Maybe giving into this one thing wouldn't set the stage for having to give into all things because he screamed and cried and didn't want to try them.

But they are just sleeves.  Not snakes, not sky diving, not asparagus.  Just sleeves.  My main goals for Ben are for him to grow up to be functional and happy, and giving up and letting him wear long sleeves when the weather clearly called for something else just didn't seem in step with helping him reach those goals.

His wonderful occupational therapist was a bit stumped by it as well.  She suggested we trim the sleeves of the shirts bit by bit to get him used to it, but I had an issue with chopping up perfectly good clothing.  I searched online and found nothing but either what the therapist had suggested or just ignoring it and letting him burn up in long sleeves in Texas.

So I did something else.  Something that I do not recommend trying at home.  Something that I hope came from my love for Ben and faith in his ability to adapt and not from some horrible motherishness on my part.

I hid all of the long-sleeved shirts and all of the long-sleeved jammies, announced that they were gone because the weather was warm now, and MADE HIM WEAR SHORT-SLEEVED PAJAMAS.  He screamed, cried, removed the T-shirt over and over, and I hugged him to me and rocked him in the recliner under his weighted blanket and just let him scream it out while desperately hoping I wasn't scarring him for life.

The next morning, he woke up all smiles, did not mention the horrid T-shirt his mean mother made him sleep in, and calmly picked out a short-sleeved polo shirt with a dinosaur on it to wear to school that day.   He now occasionally mentions wanting long sleeves when he gets dressed, and almost always asks for long-sleeved pajamas, but aside from tugging at the shirt a bit when he first puts it on he is fine.  He even wears sleeveless shirts on occasion.

Did I do the right thing?  I have no idea.  Would I recommend it to others?  Probably not.  But, as I am learning more and more, every child with Autism is different, has different issues, and needs different things.  I didn't know what to do, so I did what occurred me and it just happened to work out this time.  I am happy he gets dressed with minimal problems, but I am totally dreading the fall.  I did my best, and no matter what happens or comes up in the future, I will do my best for Ben, even if that means not knowing what to do and just having to feel my way through a situation.

Below is a series of pictures illustrating what occurs when I ask Ben to smile nicely for a picture to document the occasion of wearing a sleeveless shirt, or to document any occasion for that matter, simply because he thoroughly enjoys refusing to cooperate with me.  He's a mess, but I sure do love him.