Tag Archives: ASD

Time to Know the Why

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Your challenges change over time. The same is true when raising a child on the spectrum. Yes, I no longer need to worry about The Boy bolting into a street or into the crowd at a mall. I no longer have to worry about acquiring words and peeling meat sticks so he will eat some protein.

363px-Decorative_toilet_seatI do have to worry about the increase in anxiety. I have to worry about how seriously I need to take the screams of “I hate my life!” and “Today is my last day!” I do have to worry about just how to handle a meltdown when my son is bigger than me, in a public venue, and out of control.

Saturday, the recording of toilets in public spaces issue reared its ugly head again. I should have known it was coming. His dad cancelled on him for Thanksgiving, and hasn’t called in several months. And the talk of toilet models and interest has increased exponentially. I should have known, but I didn’t. And I had to put my foot down and remind him that we don’t record toilets in public bathrooms. Suffice it to say, it didn’t go down well. Heh.

After he had calmed a bit on the way home (a two hour trip to our favorite town which was supposed to include a stop for me at a stationary store so I could give The Man some ideas for Christmas, but was cut short), part of The Boy’s plan was to show me how I was mistaken by showing me videos that others had taken in public restrooms. Ahem. Yes, he is indeed a teenager.

He calmed, but didn’t let it go as easily as he has in the past. He’s of an age where he is questioning authority. But autism mixes it all up because parts of him are teenager, and parts of him are 10 year old boy, and parts of him are too smart for his own good.

When we got home, I let him settle, and then we talked. We talked about how Mom and The Man make the rules, and it isn’t a democracy, although I will always listen to him. We talked about why some people might not understand his recording in a public bathroom, how they might misunderstand and be afraid. How they might call the police, and how the police might not understand. We talked about how The Man and I don’t want him to be in that situation. We talked about some of the things he had said to me when he was angry were not nice, and that everyone says things they don’t mean when they are angry, but that apologies are necessary afterward.

He still has a burning need to record toilets as they flush. I can’t erase that. But if he’s of an age where he can try to prove me wrong in some of my judgments, he’s old enough to listen to why I make the decisions I do.

(We also talked about how next time we go somewhere, we make mom’s stop first.)

Turning it Around

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Sometimes what makes me most proud of The Boy is when he is able to turn it around. Heading for a meltdown, but able to stop, relax a bit, refocus, and get back to work.

when the school calls...A couple of weeks ago, I was at my desk at home, preparing to go to work. I got a phone call from the school, and it was the counselor (not a usual person to call). She explained that The Boy was in her office because he had gotten upset in Language Arts, and had become destructive, throwing things, and sweeping things off of desks.  This is not typical for The Boy unless he is very upset.  The counselor said, “He thought maybe he should call you,” and I replied, “Ok…” I was sure he was going to ask me to come pick him up, which I don’t often do, as that would teach him that he can escape the tough stuff. Besides, I have to work, and don’t get paid unless I do, so there’s that.

“What’s up, Bub?”

“Today is the same as yesterday,” he said.

“Does that mean that Friend-Who-Is-A-Girl is not at school today?”

“Yeah. She moved,” he said, whining.

“I don’t think so, Bub. I think she’s just on vacation or has a cold or something.  But here’s the thing.  I know you’re upset, but throwing things and knocking things off of desks is not a good way to handle your anger, right?”

“Right.”

“And going to school is your job, and you need to be in class, right?”

“Right.”

“So what’s the plan? Are you going to take a breath and go back to class?”

“Yeah, I think I can do that,” he said, and handed the phone back to the counselor.  She didn’t sound at all sure that this was a good idea, but I know my son.  Once he has decided upon a course of action, he does it.  And he did.

The TA emailed me later that day to explain that there had been a substitute teacher in language arts, and she had been called away, so she didn’t want to leave him in class with someone who didn’t know him, and that after we talked on the phone, he had an excellent rest of the day.

I think many of us have a hard time “turning it around”.  It’s hard for me to focus on the positives of a situation that is making me tear my hair out, or to switch gears right in the middle of something.  But I am so proud of this young man being able to do this.  Proud and hopeful.

Proud

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The Man and The Boy are a sight to behold.

When we end up going somewhere in two vehicles (which happens more than I’d like, but what can I do), The Boy will always choose to ride with The Man in his truck.  They talk about vehicles, and The Man makes the stupidest, corniest jokes that only 13 year-old-boys might find funny, and they crack each other up.

They don’t wrestle as much as they used to, because The Boy is quite simply too tall, and they could injure each other easily. But they are quite comfortable with each other, and it makes me smile.

The Man has learned a lot, especially in the last two years. He questioned much more at first, but now he seems to get it. He still gets annoyed, as I do, after listening to forty-five minutes of descriptions of the dome light of every known make and model of car. But he doesn’t lose his patience. He seems much more ready to understand that a meltdown is not misbehavior.

My BoysAs I write this, I am looking out our back doors, watching The Man teaching The Boy how to drive the lawn mower, while sitting up on the back of the seat because The Boy can no longer fit on his lap.

And earlier, I watched him tear up at a news story about a special needs family fighting to get treatment for their daughter. I know his perspective has changed, and I know now we are an “us”.

I am so happy for The Boy, so happy for us. And so proud of The Man.

Not Easier, Just Different

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Mom & The BoyThe other day, I pulled out all of the scrapbooks and went through them, remarking at how little The Boy was, and reminiscing. I think some people look through old photos and are wistful for easier times…

I don’t know about other parents with kiddos on the spectrum, but I don’t miss those times. They certainly weren’t easier.

Back then, I had to deal with diapers, until the age of five.  Now I have to deal with the toilet clogging on a regular basis (Thank you, Intestinal Surgery!)

Back then, I had to deal with The Boy wandering and getting lost in department stores.  Now I have to deal with getting him to get some fresh air and come out of his room.

Back then, he was obsessed with Wubbzy and Mat Man.  Now he is obsessed with Sonic the Hedgehog, and the dome lights of cars.

Of course, our history isn’t entirely one of struggle. Luckily, the blessings of that little Boy continue to make him my joy today.  He is still (even at thirteen!) affectionate, at least at home. He still has a wonderful sense of humor, and is a lot of fun to be around. He is still able and willing to participate in the world around him (as soon as he finishes his game).

Nope, I don’t miss those days — OK, maybe I miss the smell of a baby, the giggle of a toddler, and the ability to pick him up and carry him out if he started fussing. But I don’t miss not having a single clue about autism, or a single person to talk to about it. I don’t miss the what-ifs and constant worry that is only lessened with experience and time.

I’m not saying it’s easier now.  It’s just different.  And now, even if I don’t have all the answers, at least I have a clue. 😉

Conversation Starters, Spectrum Style

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Our kiddos on the autism spectrum need practice with social skills.  I tend to let The Boy relax when he gets home because I know he’s worked hard all day, staying quiet when all he wants to do is make silly tuba noises, paying attention when all he wants to do is draw, and doing his best to get his work done all damn day.

But, neither does he get a free pass.  We still have homework to complete and projects to do at home. And summer is not a free pass in this house, either.  Especially if there is no camp.

I have always taken summer as a wonderful opportunity to target areas in my own learning, or develop new ways of doing because we run out of time during the school year.  This is so ingrained in me, that I’ve been planning with The Boy for all of the areas we can practice skills because we just don’t have time, and The Boy does not have the energy or patience after a long day of school.  I was reading a blog post on Momastery.com I found through Pinterest that looked like an activity that had potential not only for social skills and conversation practice, but could also provide an opportunity for me to get inside The Boy’s head a bit. The Holy Grail for autism parents.  But as I read, I realized it wouldn’t quite work for us, because open-ended questions often do not get answers from The Boy.  There are just too many possible answers, and he freezes.  He needs selections to choose from –  multiple choice, if you will. And then I remembered this other game of question and answer, a get-to-know-you game where possible answers are provided…

We’re pretty used to modifying activities and assignments around here, so I’m sharing with you an activity (free printable) I developed, “Planting the Seed – Conversation Starters for Kiddos on the Spectrum“.  Check it out, download it, tailor it to your own kiddo and then come back and let us know what you thought and how it worked.

dandelions_black

Some Rough Days

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The Boy has been having some rough days at school this week.  Lots of talk about people being absent from school, and students who have “left” school and may never come back.  None of it is true, but he has emotional reactions to these “events” and we are left to try to figure out what is at the heart of it. Add that to lots of perseveration on his favorite topics, and anyone can see he’s anxious about something.

His teacher emailed me the other day commenting that he seems to let one small correction bother him, and then add real infractions to ensure he gets “punished” or sent home, or some judgement that seems worthy in his mind.  I let her know that this is a common occurrence at home, as well.  Yesterday, I could tell she was frustrated because her email started with “Another bad morning today…” at 10:07am. Rather than respond, I let it ride. She’s young, and doesn’t seem to have the patience the job requires all the time.  Maybe she just needed to vent. I wanted to remind her of Rule Number 1: Behavior = Communication, but I didn’t.  People don’t like it when you tell them how to do their jobs.

crabby

And sometimes he’s just crabby… Kiddos on the spectrum are allowed to have emotions, too.

I’m not sure what’s going on with The Boy, but he seemed much happier yesterday afternoon than he has been in about a week.  I hope that whatever has triggered this latest round of rough days has resolved itself, but only time will tell.  The Boy and I did talk yesterday evening, and I got the sense that we had turned a corner.

Sometimes we figure it out, and sometimes we let it ride and walk on eggshells for a bit. As our very favorite teacher always used to say, “Tomorrow’s another day.”

Acceptance

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Sometimes, I look back on my time being a single mom rather fondly.  Doing it on my own was something I needed at the time.  In many ways it was very liberating, and I bonded with The Boy in a way I never could have as a married parent.  And then I remember how lonely it was, as well, when I thought it would always be just the two of us.  When there was no one looking out for me besides myself, money was tight, and I had to fill every adult role. Being ill was completely out of the question because there was no one to take care of either of us.

And then I remember even further back when I was married the first time, and one of my friends tells a story about a time soon after The Boy was born when I was so ill that I called her to take me to the hospital.  She tells the story because I have absolutely no memory of it (funny how the brain works). Yes, I was married at the time, and when my friend tells the story, she says that when she arrived to pick me up, she watched the ex step over me, lying prone on the floor, on his way out to his grown-man basketball league.  I guess I was dehydrated, for which I have gone to the emergency room a couple of times in my life, and apparently he had no inclination to take me to the hospital himself, regardless of the fact that I was very visibly ill, and we had an infant at home.

Some single moms get very vocal and agitated when married moms say they feel like single moms.  I’ve been in both positions and try not to judge.  Life as a single mom can be very, very difficult, and life as a married mom can be very, very difficult, as well.  Both positions can also be incredibly rewarding and satisfying.  And unless you are living someone’s life 24 hours a day, you really have no idea of another person’s challenges.

I find the same type of vocalizing and agitation in the autism community on various topics, and judgement all around. Words like “aspie” and “high functioning” can cause full-throated arguments, as can person-first language, vaccines, Autism Speaks, and even the varying parts of the spectrum and who has it “harder”.

I don’t often swear in my writing, but I call bullshit.

EarthEveryone, EVERYONE on this planet has their own struggles, some more visible than others.  Everyone also has their own opinions.  And there is very little in this world that is truly black and white, right and wrong.  Our diversity and duality make us human, and dare I say, interesting.  We don’t have to agree to like each other, learn from each other, or coexist.  We don’t have to compete for whose life is the hardest – there is no trophy.  But I have learned that experience is the best teacher, and if we can be civil to each other long enough to listen to one anothers’ experiences, there is a lot to learn about our kiddos, ourselves, and these interesting people with whom we share this space on Earth.

No Program Extension. Now What?

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I found out the week before break that most likely, The Boy’s pilot program for “high functioning” autistic middle schoolers will not be extended into the high school, as we were previously encouraged to believe.

So now what?

He is currently bussed across the district for his program, and has a community of friends in and out of the program. If they do not extend it into the high school, he will have to go to high school here in his own community, where he knows absolutely no one, and if the high school over here is anything like the middle school was… Let’s just say that’s not going to happen.

what nowThe Man and I have been looking to buy property and build a house out towards The Boy’s school anyway, but so far have not been in the right place at the right time to make that happen.  Moving out that way would make his current school his home school, and the high school I’d like him to go to his home school, as well, but we’ll just have to wait and see.  And unfortunately, we only have another year to make all of this happen.

And then I begin to think, “Could I make homeschooling work with a full-time work schedule? Maybe with the help of Grammy?…” I think I’d be killing myself to make it happen, and The boy would miss out big-time on socialization with NT peers, but I’m not ruling it out.

Part of me is saying, “Well, maybe there are decent schools in Florida, where we want to move eventually, and maybe we should fast-forward the timeline…”

Ugh.

Being forced to make major life decisions like this because a school district can’t do the right thing and commit to the needs of its students really bites.

Book Club Discussion: The Reason I Jump, “Never-Ending Summer” Part II

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I’m continuing the discussion here today because The Reason I Jump is an important book.  Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, hireasons thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

Question 32 asks about what those with autism see first when they look at something.  Naoki reinforces what I have heard in many places, that those on the spectrum see the trees first, and then the forest; the details before the whole.  He also says they tend to “drown” in the particularly striking characteristics of those parts, and it tends to be harder to see anything else. If someone you love is on the spectrum, you will have, no doubt, experienced the attention to detail.  The Boy is always drawing my attention to some small part that I never would have noticed without his help.

Question 33 asks about appropriate clothing, and why this can be a struggle for those in the spectrum.  Naoki says they know and understand why we wear the things we wear, but that they “forget” what is appropriate, and how to make themselves more comfortable. He also explains that those who choose to wear the same thing each day (we have had our battles with this, for sure!) feel like their clothes are an “extension of our bodies,” and a guard against changing situations.

Question 34 asks about perception of time. Naoki says, “the fact that we can’t actually feel it makes us nervous,” and this makes perfect sense to me.  Timers help many on the spectrum have a sense of passing time, especially those that are visual in nature. And because the future is uncertain, it is a cause for a great deal of anxiety.  This is one of those answers in this book that just “clicked” for me, a true “A-ha!” moment.

Again, this book is a source of inspiration and wonder for me, and may be the closest I’ll ever get to reading The Boy’s own mind.  Not every person on the spectrum is the same, but these answers are food for a great deal of thought, and foster greater understanding and patience between me and my son.  I highly recommend this book.

5 Ways Those that Diagnose Autism Could Better Help Families

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If you read any narratives or stories about how children or adults have been diagnosed, you will begin to detect a pattern.  And it’s not a good one.  “Your child has autism.  Have a nice day, and don’t forget to pay the lady on your way out.” The Boy was diagnosed eight years ago, and unfortunately, this pattern does not seem to have evolved at all over that time.  It’s absolutely criminal.

In order to get a bona fide diagnosis (one that will qualify your child for an IEP), you must see a certain type of mental health professional.  Psychologists are doctors, too, and I don’t understand how sending someone off with a diagnosis and little else is aiding anyone’s mental health.  Because there are only certain professionals in any community that can even provide this diagnosis, I suggest that they could be doing so much more, in collaboration with the people and groups that can actually provide services that will help a family navigate a diagnosis of autism.

  1. The Psychologists and doctors who provide these diagnoses need to form a relationship with the local schools, and there needs to be a liaison from the school district that is willing to be the point of contact for parents with questions about how a diagnosis of autism will affect their son or daughter’s schooling.  It is not sufficient to have a list of names and phone numbers on a piece of paper to hand to people, but rather a name and phone number (lists are intimidating and unreal, while a single name is much easier to humanize), and an assurance that this person will be contacting them to see if they need help.  Don’t put the burden on the parent who has never even contemplated some of the next steps.  Put it on the professionals who are in a position to help.
  2. In many states, a student is automatically placed on a social worker’s caseload when the team develops an IEP.  A social worker should also be a point of contact as soon as a child is diagnosed.  Too often, parents not only need information, but they need help processing the diagnosis themselves, and understanding what it will mean for their lives, both short and long term.  There are also inevitably parents who will be in denial, as well.  Having a community of professionals reaching out to you, providing support and information can only help.
  3. The psychologist should also provide more than a pamphlet or business card with the local Autism Society’s number on it.  Again, there should be a liaison from the local chapter of the Autism Society who offers to mentor parents, and again reaches out to the family, even if they don’t make the phone call themselves.
  4. When The Boy was born, the hospital put together a “parenting” group of several families who had had a first child around the same time, run by a more experienced, volunteer set of parents who would host monthly meetings on topics that are commonly on brand new parents’ minds.  Why not form a similar support group for parents of children who are all diagnosed around the same time?  Just like those with brand new babies and no instruction book, parents of kiddos on the spectrum are just as bewildered, and to have a group of other parents who are going through the same things would mean a world of support to these folks.  If our hospital could put it together for new parents, I don’t see why mental health professionals who diagnosis spectrum disorders couldn’t do the same.
  5. Parents should also be connected with an advocate, even if the child is still a toddler.  While it is a great idea to have a personal connection to the school system, one has to remember that schools don’t have much money, and if they can save money by not offering a service, they will.  Indeed many times, parents aren’t even aware of the types of services schools can and should provide.  I worked for a school district that encouraged its special education teachers to gloss over any mention of extended school year services (ESY) during IEPs, and as a result didn’t run any type of an ESY program.  A personal connection to an advocate will begin the process of educating the parents about their own child’s educational needs, sometimes in spite of what the school may say they need.

I think we have found that it really does take a village to raise a child, even more so a child on the spectrum.  Why do we continue to make every parent with a newly diagnosed kiddo re-create the wheel?  The trails left by those who have gone before are there – I know because we made them.  But they need guides to find them, and it begins with the conversation that happens immediately after the psychologist says, “He has autism.” Maybe there are some health professionals already doing this.  I sure hope so.  If their aim is to truly help those in need, one would think they would have already thought of these ways of connecting with others in the community who can provide a support network – ready guides to help parents of the newly diagnosed to find the paths blazed by those of us who have already done it the hard way.