April Fool’s Day and Autism

It has been a very long time since I have written anything and this blog post has been in my head for a year since last April Fool’s day, so I have to get it out there.

Last year, my then 8 year old son with aspergers didn’t want to go to school on April Fool’s day. When asked why he told me someone was planning an April Fool’s joke on him. It was his classroom aide of all people. Perhaps she should have know how the unexpected can affect those she deals with who have autism, but it is hard to remember that what is so small and insignificant and funny to many people, is much more anxiety producing and hence not really very funny to others with invisible disabilities. I can hear many people out there saying, “these people just need to have a sense of humor.” Well, it isn’t that easy. Last year, I reassured my son and sent him to school. His aide told him a small joke and he thought it was funny and we moved on.

Little did I know that this April Fool’s thing would continue on until the last two weeks since my son has been stressing out about going to school on April Fool’s Day. One unpredictable day equals 2 weeks of stressful anxiety for him. Is all this stress worth him learning to “have a sense of humor?” I am leaning towards not… Since we did not do anything fun for spring break this week because I had to work, I am contemplating keeping the kids home on April Fool’s Day and having a Family Fun Day instead! Since it is also the day before 2 days of standardized testing for him, I am even more convinced it is the right thing to do for our family, but standardized testing and autism/aspergers is a whole different topic that maybe I will broach her sometime.

Be sensitive to your audience this April Fool’s Day!

I talked to my son again this morning about how he was feeling about tomorrow (4/1/15) and he is still anxious.  We talked about what happened last year an he recounted a very simple, common school practical joke and said he ran out of the room.  He said he was frustrated, mad and confused.  Those are big emotions for an then 8, now 9 year old.

Anyone else have any April Fool’s Day and Autism stories to share?

Posted in Uncategorized | Tagged , , , , , , , , , | Leave a comment

Books on Girls and Autism/Aspergers

Parenting Girls on the Autism Spectrum by Eileen Riley-Hall, mother of 2 girls on the autism spectrum, l with aspergers and 1 more severely affected.  She has terrific insight into how boys and girls on the spectrum are different.  She also goes through the various stages from getting a diagnosis to working with the schools and more.  There are lots of practical tips for working with girls of the spectrum.

Aspergers in Pink by Julie Clark.  Like the above book, this is a great personal story of autism presents itself in her daughter and how she has worked through the various stages of diagnosis, education, etc.  I could really relate to her experiences working with public education.  While it is primarily memoir, she summarizes  what she has learned along the way in succinct bits of wisdom for others at the end of every chapter.

Twirling Naked in the Streets and No One Noticed: Growing up with Undiagnosed Autism by Jeannie Davide-Rivera.  An autobiographical account of her life understood in hindsight through the lens of her later in life diagnosis.  It is a great eye opener and much needed testimony on how autism can affect all aspects of a person’s life at all stages of life.

Aspergers and Girls article by Tony Attwood, Temple Gradin, Teresa Bolick, Catherine Faherty, Lisa Iland, Jennifer McIlwee Myers, Ruth Snyder, Sheila Wagner and Mary Wrobel.  Each author is either a person with autism or an expert in the field and has an article on a particular topic.  Some articles are better than others.  The ones on friendship and puberty really felt like they talked down to girls with aspergers and presume complete incompetence and lack of knowledge when most girls with aspergers are very intelligent.

Aspergirls by Rudy Simone.  While there is good information and personal testimonies of women with aspergers in this book, the tone of this book felt odd to me.  She often says that all women with aspergers are different, but the presentation of various traits of aspergers feel like they are being presented as absolutes.  In the brief testimonies you get glimpses of the true diversity of women on the spectrum.

Posted in Uncategorized | Leave a comment

Books for kids with Autism/Aspergers

The busyness of life has taken over and I have had little time to develop any profound thoughts to write about.  I have, however, continued to read and watch any possible thing I can about Autism/Aspergers, so the next few posts will talk about these books and movies.

Ethan’s Story: My Life with Autism by Ethan Rice.  This is a nice book written by a boy with autism describing himself to his friends.  It starts out with the basics that all kids are different and he is tall.  Then it touches on the autism differences.

I Love Being My Own Autistic Self: A thAutoons Book by Landon Bryce.  The cartoon characters in this book represent people at various points on and off the autism spectrum.  It introduces the various difficulties autistics face.  It also gets into the philosophical viewpoints of these characters and how they feel when people other people talk about various issues such as autism being a fad or needing to be cured.  It can be a bit dense for the younger reader, but is a great introduction to Autism.

All Cats have Asperger Syndrome by Kathy Hoopman.  While very cute, it makes some very general statements about what autistics are like.  Since all autistics are different, not all of the statements apply to everyone.

Emotes books by by Matt Casper and Ted Dorsey.  The two we have read are Cant Looses his Cool and Drain and the Mystery of Sleep.  My son loves the Emotes characters that he was introduced to at school.  Each character represents an emotion and how that emotion can take over and how to deal with it.  They are very well done and a great starting point for talking to kids about emotions.

Posted in Uncategorized | Leave a comment

Starting over: summarizing my philosophy on raising a son with autism

So, after much turmoil, I have finally been granted a new case manager to manage my son’s iep and adaptations at school!  I could have done without the guilt trip they gave me before granting my request, as I feel bad enough probably hurting someone’s feelings; but, it was not a good fit for us and I need to do what is best for my son.  One short phone call with the new lead, confirmed that it was the right thing to do.  I was really impressed with her communication, knowledge of autism and related terminology, initiative to investigate trends in behavior in order to identify causes and pushing to re-evaluate now rather than wait for the official time because of the struggles she is seeing.  Big change from the we need to wait and see how he adjusts that I was getting before.

I have asked for a meeting with the new team to get to know each other and talk about the philosophies we have and what the new people will be working with him on so we all start out on the same page and have all the information about what is going on.  My task, therefore, is to summarize my philosophy on working with my aspie son in a few succinct phrases.  So here goes:

1)  “He would if he could” – He is not choosing not to do something because it is a non preferred task, but rather is frustrate and unable to do the task due to some lacking skill and we need to work with him to develop this skill and get through the frustration.  (This is a basic assumption of functional behavioral analysis)

2)  “Behavior is communication” – If he is not using his words, it is because his words are failing him at that time.  We need to listen to his behavior and get him what he needs.  Do not push him to use his words as this just escalates the situation more.

3)  “Stimming is a coping mechanism and shouldn’t be discouraged” – If you are interested in getting him to stop stimming, you need to look at what is going on that is requiring him to cope using stimming and eliminate the cause.  Just letting him stim is ok too; he is dealing with the situation in the way he knows how.

4)  “He is different, not less and ok just the way he is” – He is in big need of self esteem boosting.  We will work with him to learn new skills to cope, but in no way imply that being autistic is wrong.

5)  “He does not need to sit still and look at you to be listening” – In fact he is probably listening to you better when he is pacing and averting his gaze because he can focus on what you are saying rather than his body’s need to move or the visual stimulation he would be getting by looking at you.

6)  “Presume competence” – He is capable of much more than he is able to communicate to us.  I have a hard time explaining this one since he is verbal and can tell us a lot, but I do think it is an important concept in autism awareness and advocacy.

I am sure there are other important ideas I am leaving out; feel free to share more ideas in the comments.

Posted in Uncategorized | 1 Comment

Helping teachers get to know your autistic child and the fallacy of high functioning

With a new school year upon us, I have done a lot of work to help new teachers and people working with my son with aspergers understand him better.  I decided to create a document to help describe his challenges and some ways to help him through them.  Not wanting to focus solely on his difficulties, I tried to include an intro of his strengths.  As I was writing the document and adding more and more things, I was amazed at the long list of challenges he faces, despite being on what some call the high functioning end of the spectrum.  With such a list of challenges, I don’t think anyone could say this is high functioning.  He probably will learn to function in a society dominated by non autistic people, but he will probably also still have to deal with all these difficulties and work hard to implement ways he has or will learn to deal with them for his whole life.  In order to make his life and the life of all autistics easier, understanding and acceptance of these differences and not demanding that they adjust to fit in with the rest of the neurotypical is essential.  We do this for all sorts of other handicaps, hopefully with more awareness and education, this will happen for all the autistics out there as well.

I am sharing my document here in hopes that others with autistic children may find it useful:

A little about A A loves to learn and is very curious and bright.  He is very active and in constant motion.  He is shy at first, but opens up once he gets to know people and is very loving and caring.  He loves to be with friends, but also needs time alone.
Things A may have a difficult time with Successful ways to work with him
transitions follow a schedule
give warnings of when a transition is coming (10 minutes, 5 minutes, 2 minutes, 1 minute)
allow him extra time to transition if he needs it
if he is missing time at an important activity, let him “make up” the time doing that activity later or at home
sitting still position his desk in an part of the room where he can move and not distract others (for example to the side)
use a ball chair
allow to wander the room (he still is listening)
schedule his breaks around his most difficult times of day
have an area of the room he can go to for a break (maybe keep his sensory items in a box there)
eye contact don’t demand (he is still listening)
ask if he understands
have him repeat if necessary
expressing his frustrations in words let him take a break when frustrated
don’t try to talk it out (he just gets more frustrated)
tell mom about the situation and she will talk to him later when he is better able to process
leaving a project of interest unfinished leave enough time to finish all projects
give advanced warning if there will not be enough time to finish a project
make sure he knows the plan of when the project will be finished
give warnings of when the stop time is coming (10 minutes, 5 minutes, 2 minutes, 1 minute)
changes give advance notice of when a change is coming (like moving desks, etc)
if at all possible let his situation remain unchanged and just change those around him
give him choices around the change (for example: who he would be like to be next to when the change occurs)
homework allow him a weekend to finish any homework assignments (he is fried by the time he has gotten through a school day, needs a break and is not able to do homework in the limited evening hours)
organization he needs reminders and supervision to make sure he gets his papers into his folder (not just crumpled in his bag)
he needs reminders and supervision to get needed items like reading books in his backpack to go home
oral stimulation let him have gum accesible
remind him to use gum if you notice him putting things in his mouth or chewing his clothes
sensory seeking allow him to push on things for sensory pressure
allow him to touch your hands and arms if you are comfortable with that
have a box of sensory items (squeezy toys, scented marker, etc) available for him in his break spot
loud noises when possible warn him if alarms will be going off (tornado/fire/lockdown alarms)
have him use headphones to reduce the noise during alarms or assemblies
yelling use a regular or quiet voice as much as possible (he shuts down when someone is yelling and will refuse to comply)
making decisions give him extra time for decision making
brainstorm ahead of time possible topics/ideas for projects
allow to finish later or take home if he has a block and isn’t able to decide
regulating emotions give him space to calm down on his own (avoid talking to him as that fuels his frustration)
try offering a snack (he has a harder time with emotions if he is hungry)
focus and task completion give rewards for finishing (for example: if you finish it quickly you can have time for _____)
give reminders to get him back on task
migraines allow him to go to the nurse to take tylenol when he has a headache
if he seems to be unusually lethargic or hiding his eyes from light or showing other signs of pain, ask him if he has a headache and remind him to go to the nurse for tylenol
things being taken away this generally makes him less complient and can spiral him into a meltdown so should be avoided when possible
Things other teachers have done Redirected with the use of the whiteboard (we wrote a question, he wrote back)(distraction)
stop watch to show how much time he owed doing a certain activity if he did not transition there right away, then he would spend that much time with the activity later
giving him tasks to do helps his mood and self esteem
Things that motivate A humor
a friendly competition
getting to write about topics of interest (currently ninja turtles, ninjago)
earning things he wants (computer time, candy, small trinkets)
What A’s mom needs open communication
notification by email or phone when Adler has an off day so we can discuss it later and figure out how things could be changed to avoid similar problems or help him think of ways to deal with the problems
when possible, notification of when there will be a sub or changes to the regular class schedule

I believe this document has helped his general ed teacher understand him a little bit better, but like all people there is a need for trial and error with different methods of working together.

Unfortunately, despite this document, the beginning of the school year has been off to a rocky start.  This, however, is, I believe, due to issues with his special ed support; so, I am now off to fight my next battle in that realm.

Posted in Uncategorized | Tagged , , , , , , , , , | 1 Comment

Why does something small set off an autistic child?

As back to school time approaches, I have been thinking about all of the anxiety that a typical day includes for an autistic child.  Because they process things differently, every experience takes a lot of effort.  Going to school requires separation from their home where they hopefully are comfortable and understood, entering into a loud and crowded environment where they are over stimulated, many transitions, being quiet, sitting still, the possibility of unanticipated things happening and more things that do not always come naturally or easily for an autistic child.  No wonder their bodies are on high alert.  That is a lot of stress and anxiety just to process a typical day.  So, when an autistic child looses it, it may seem like a small thing to everyone else, but for them it is the straw that broke the camel’s back.  They are no longer able to find a solution to any problem that comes up and they meltdown and then calming down is not a skill that comes naturally either, so the meltdown last forever.

To help people who don’t have autism understand what a typical day may feel like, I offer this senerio.  Today you have a very important meeting at 8:30 and you need to meet with your boss at 8:00 to go over the plan.  Due to the stress, you couldn’t sleep last night, your alarm doesn’t go off, you overslept and you have to rush to get out the door.  When you get in your car, it won’t start.  You find a neighbor to jump start your car.  Finally, you are on your way, with 30 minutes to make a 45 minute drive.  Of course you get stopped by every light before hitting the freeway and in an attempt to make up time you are speeding.  Wrong day to do that, you get pulled over.  You miss your 8:00 meeting with your boss for which you call while still en route and profusely apologize.  Despite all the delays, you run into work right at 8:30 and make the meeting.  Everything worked out ok, but how do you feel?  Your nerves are fried, right?  Your heart is beating 100 beats a minute, right?  You’re mad for getting a ticket.  This is how an autistic might feel on a typical day.  Then, after your meeting, your spouse calls and says he/she can’t pick up the kids after work.  You can’t possibly leave early when you screwed up this morning.  You yell at your spouse instead of thinking of alternatives like finding a babysitter, working from home in the evening or coming in early the next day.  Can you imagine if you felt like that every day?  Now can you relate?

I try to remember all the challenges my son faces when he is having a meltdown.  It is not always easy to remember and I want it to be easier for him, but all I can do is try to understand, be patient and help him calm himself until he learns the skills to do it himself.  It does not help to get mad at him because that will only make things worse; he can’t help it.  It doesn’t help to get mad at the situation because that won’t change how things are.  He is slowly but surely learning the skills he needs to make it through life’s stresses; it will just take him a lot longer than a non autistic because there are more things that do not come naturally or easily for him.  So, please remember to be kind to kids and parents when they are dealing with a meltdown, they are doing the best they can.

Posted in Uncategorized | Tagged , , , , , , , , , | 1 Comment

And We All Meltdown

Yesterday was a challenge to say the least.  The morning started pretty normal, kids fighting over the space my son with aspergers created for himself to hide out.  My daughter loosing her tv privileges because she wouldn’t listen when I told her she need to get out of his space.

Then everyone happy as they decided to listen to music, each blaring a different cd in the same room at 6 in the morning (I am sure the neighbors in the adjoining townhouses were thrilled with that).  I tried to get them to turn it down, but decided it wasn’t worth the fight after a few attempts.

I couldn’t get my son to eat breakfast, he wanted to eat school breakfast in a few hours when it was served.  Again, not a battle worth fighting, so we left for school with only a few grumbles about not wanting to go because of a boy who has been teasing/laughing/bullying him.

This is our first official incidence of bullying due to his autism and he has just told me about it over the weekend.  My son will sometimes go into his own world: wandering around, pushing on things for sensory stimulation, imagining entire scenes in his head, making sound effects to go along with the scene.  He needs this time to decompress from the demands of the day.  We call it playing with his imaginary friends.  Well, this older boy in the before school program has taken to telling him imaginary friends aren’t real and you can’t play with them and getting other groups of kids to laugh at him.  As a mom I was crushed and felt so sad, just knowing that this won’t be the last time he will encounter this type of meanness.  The whole weekend was a loss for me as I have been struggling with depression due to many simultaneous stresses in my life right now and I was able to get very little done.  I talked with my son about it and he decided over the weekend he did not want me to talk to the staff about it since the year is almost over and the kid will be in another school next year, however, it must have happened again Monday because he now changed his mind that he did want me to talk to them about it.  So with promises to email the staff later, off to school and daycare we went.

His day at school was up and down with him unwilling to participate in some activities, yet doing others.  The real hell broke loose when I picked him up.  He wanted to go right to the store to buy something.  Knowing, as most parents of autistic kids know, that no will set off a meltdown, I try to avoid it by saying not today since we had a school event for his sister and his baseball practice that night.  In this case not today was not good enough to avoid the building meltdown.  The kid bolted.  I followed him to several areas of the school, letting him know I was not going to chase him and I was going outside with his sister who was with me. He did follow, but still would not come near me or go to the car.

Knowing that anything I did  would only escalate the problem, I let him hide out in a corner to calm down.  His kindergarten teacher from last year wanted to help, but any contact with him would have made him lash out or bolt, so the only thing we could do was wait him out and let him calm down.  She and the janitor did have to ask him not to kick the glass windows and he did throw some rocks at me, but for the most part we were all safe.  His sister, for once, was being very patient in waiting and playing around me while we waited for about 40 minutes for him to even be approachable.  She played on some rocks and had me help her climb a tree.   At this point he was calm enough for me to explain to him that this was not going to help him get what he wanted and that we should go home and make a plan for him to earn what he wants on another day.  I was able to walk in the direction of the car and get him to follow me a bit though he was still refusing to leave.

We sat on a bench and cuddled for a bit, but then he got upset again because it was not his day to control the tv (we have to switch off to avoid fighting over it).  He felt since his sister lost her privilege he should gain it, but we talked about that not being the way it works.  This reminded his sister she was upset, so she started to cry on the bench next to me as my son stepped away to have his space again.  Now having two loosing it, I want to run away myself.  His wonderful teacher leaving for the day wants to know what she can do to help, but I have no idea what would be helpful at this point and I tell her this with tears in my eyes as I am feeling so helpless myself, but am trying to keep myself strong to get through it.  We just need time.

After a little while longer, my son is calm enough for us to start walking toward the car and have him follow.  All the while he is screaming he is not going home and he wishes he had a gun to shoot his head off.  I assure him we will wait and sure enough he follows us and angrily gets into the car.  We are finally able to get home about 50 minutes after I first arrived to pick him up.  I am now fried and have to try and figure out if given his state if we are going to be able to get his sister to her kindergarten round up while at the same time getting him to baseball.  I am unsure he will be able to handle it?

We give him some space at home.  My daughter and I play outside for awhile and he is able to calm himself.  He decides he does want to go to baseball.  I explain to him that I cannot leave him there if there is a chance he will get so upset again and he assures me he won’t.  I can tell the switch has been flipped as he is his normal happy self again, so I try to figure out how we are going to swing being in two places at once.  I verify the time and location of baseball with my sweet neighbors who offer to help.  We leave the kindergarten roundup at a break and run him to the first baseball practice of the season where my neighbor will keep an eye on him while I run my daughter back for the rest of kindergarten roundup.  Everyone got to do what they were supposed to do and we all survived!

After the kids are in bed asleep, I come downstairs for some me time to find that his sweet teacher has texted to let me know she is thinking of us.  We have a nice texting exchange where she tells me I am an amazing mom.  Well, this is the last thing I feel like, exhausted and depressed are more like it, but it is nice to know that at least one person is not judging me harshly because after all I just had an entire school of students, teachers, staff and many parents witness me have an hour long waiting game with my son.  I can only imagine the thoughts that went through some people’s heads.  However, I know I am doing the best I can and am trying to be as patient as I can with my struggling autistic kid.  I wish there were some tried and true methods, but we all just learn what works as we go along and it gets harder, not easier as they get older since I can no longer pick him up and he has more struggles to deal with.  I thank his teacher profusely for working so hard with my son as I know he can be a lot of extra work, but most of the time he is a great kid.

I am reminded that I really need to get some more support for myself.  I am waiting to hear back about my application to get some respite care and both of my kids are just about to get set up with mentors.  Hopefully this will give us all some special time and a break from each other.

Some may be asking why I am sharing this story.  Well, for one it is cathartic for me.  Secondly, I want people to understand how hard it is so they may be less judgmental of anyone they see going through a hard time.  Finally, I hope that by sharing I may provide someone the reassurance that they are not alone in dealing with meltdowns, feelings of helplessness, depression and let them know they are doing just fine.

Posted in Uncategorized | Tagged , , , , , , | 2 Comments