Basketball Magic
I am sure a number of you have heard about this story, but it's definitely always worth sharing! A young highschool boy with Asperger's Syndrome steals the show during a his highschool basketball game. A must see! http://www.youtube.com/watch?v=ngzyhnkT_jY
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Shonda Schilling 's Frank Account Of Son With Asperger's Syndrome
Just found another book to help families coping with Autism to shoulder the weight of their added responsibilities and challenges. “The Best Kind of Different: Our Family’s Journey with Asperger’s Syndrome” is written by Shonda Schilling. In more than 200 pages, Shonda tells us about their third child, Grant, now 10 yrs old, and how their family struggled while learning to cope with his Aspergers.
Baseball fans will know Shanda’s husband, Curt Schilling. Wkiipedia tells us that Curt is a former American Major League Baseball right-handed starting pitcher. He helped lead the Philadelphia Phillies to the World Series in 1993 and has won World Series championships in 2001 with the Arizona Diamondbacks and in 2004 and 2007 with the Boston Red Sox. Curt retired in 2008 because of injuries.
Shonda, who graduated from Towson State College majoring in journalism, writes it exactly how it is. Even though they had all the comforts of life to raise their four children, the overwhelming hardship of raising a child with Aspergers and the struggle to keep their family intact was just the same as everybody else.
The National Institute of Neurological Disorders and Stroke (NINDS) gives the following description for Asperger syndrome (AS). “It is a developmental disorder. It is an autism spectrum disorder (ASD). The most distinguishing symptom of AS is a child’s obsessive interest in a single object or topic to the exclusion of any other. Their expertise, high level of vocabulary, and formal speech patterns make them seem like little professors. Other characteristics of AS include repetitive routines or rituals; peculiarities in speech and language; socially and emotionally inappropriate behavior and the inability to interact successfully with peers; problems with non-verbal communication; and clumsy and uncoordinated motor movements.”
Grant was only diagnosed at the age of 7. “You go through different stages,” Shonda Schilling told FoxNews.com. “You mourn the child that you thought you would have. You’re sad because you’re afraid of the future and you feel guilty. You feel guilty because you’ve just spent the first seven years of his life yelling at him when he had no idea why you were yelling at him.”
All of the Schillings’ children, including Grant, are enrolled in the public school system in a Massachusetts town. Their lives have all been affected. Shonda revealed that her son Gehrig became anorexic while the family was dealing with Grant’s Asperger’s diagnosis; that she and Grant both wound up on medication, one for depression and the other for ADHD; and that she and Curt got counseling to save their marriage.
Shonda said:“This book shares our story and admiration for any parent faced with a diagnosis within the autism spectrum. Through our family’s story, I want other families to know that they’re not alone or isolated. The book is a celebration of children, and how wonderful they are, no matter their differences.”
What do you think must be the most challenging aspect of raising a Special Needs child?
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From Considered Weird to Considered Wonderful –Temple Grandin, PhD
In 1950, she was diagnosed with autism and her parents were told she should be institutionalized.
Sunday evening, March 28, The Coffee Klatch had a special evening session with the prominent author and speaker, Dr. Temple Grandin. This remarkable woman is among the few accomplished and well-known adults with Autism having made a mark around the world. What an honor to have her accept TCK's invitation!
She speaks around the world on both Autism and cattle handling. She used her talents to design livestock-handling equipment which is being used by half of the cattle handling facilities in the United States. Dr. Grandin has worked as a Professor of Animal Science at Colorado State University.
Temple Grandin, PhD, is a very popular lecturer on Autism and Asperger’s. I have listed at the end some of her 2010 speaking engagements at the Autism Conferences. Parents, teachers and individuals dealing with Autism and Asperger’s love her books and rush to hear her conferences.
Her latest book is The Way I See It: A Personal Look at Autism and Asperger's published in 2008 with a forward by Ruth Sullivan, the first elected president of the Autism Society of American. Also included is an exclusive interview between world-renowned psychologist Dr. Tony Attwood and Temple Grandin! This last book is a collection of short articles she’s written over the years for various publications.
Dr. Grandin cannot emphasize enough that a child with symptoms of ASD must receive Early Intervention Care. She even says, if parents cannot afford professionals for the many hours of intervention required each week, to enlist the help of grandparents. The child MUST receive this early help!
"I have read enough to know that there are still many parents, and yes, professionals too, who believe that 'once autistic, always autistic.' This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can" (from Emergence: Labeled Autistic).
Dr. Grandin is also the author of Thinking in Pictures, Animals in Translation, and Unwritten Rules of Social Relationships. Furthermore, HBO produced a full-length film Temple Grandin, which premiered on Saturday, February 6th on HBO.
Dr. Grandin has been featured on NPR (National Public Radio), major television programs, such as the BBC special "The Woman Who Thinks Like a Cow", ABC's Primetime Live, The Today Show, Larry King Live, 48 Hours and 20/20. She has been written about in many national publications, such as Time magazine, People magazine, Forbes, U.S. News and World Report, and New York Times.
You may hear Dr. Grandin at the following Autism conferences. Register quickly because some of Dr. Grandin’s speaking engagements are already sold out.
May 6-7, 2010
Future Horizons Autism / Asperger's Conference -
New York 2010 (With Carol Kranowitz)
Nassau, New York
To register please contact 1-800-489-0727 or
Nashville, TN - SOLD OUT
June 18 - Portland, OR
July 15-16 - Denver, CO
July 8-9 - Seattle, WA
July 22-23 - Dixon, IL
Have Dr. Temple Grandin's teachings had an impact on your life?
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New to site but not new to Autism...
Hello all,
Just wanted to introduce myself and tell a little about us. My name is Apryl and full time mom to 2 smart, adorable boys both of which have been DX with ASD's but both are on different ends of the scale.
My oldest, Mikey almost 8, was DX at 4 1/2 with Asperger's, ADHD, Anxiety, Auditory Sensory Issues, mood disorder's, sleep issues and possible Bipolar type 1. He is on the higher end of the scale. Sees a therapist for his moods and social issues. Attends mainstream class but does have an IEP in place and receive's help with math and english/writing.
My youngest, Bradley 6, was DX at 3 with Asperger's, ADHD, Anxiety, Phobia Disorder's, OCD, SID, PDD-NOS, developmental delays, Anger Issues, TIC's (both vocal and motor), tremor's, Speech Issues. He is on the low to middle end of the scale. We went through several IEP's during his first year in school, he was in a mainstream Kindergarten class but his sensory issues made it impossible for him to stay mainstream so he went full time SPED class which he excelled in. He receive's Speech, OT, and help in all areas and excelled in reading this past year. Outside of school he receive's OT and sees a therapist as well. He has also been excepted in the Marcus Autism Center and may receive a new DX. Just a wait and see deal. His SPED teacher is wanting to see how he does in mainstream class this coming year, I'm hopeful but nervous too!!
I'm sure I'll need help with an issue and this seems like a good place to ask for some support!!
Glad to be here :O)
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Snapshot...The Day in the Life of a Family Living with Asperger's (Intro)
My son, L., is soon to be 9 years old and has officially been diagnosed with Asperger's and ADHD. His life, our life, has been a roller coaster of highs and lows. There's so much we've experienced and learned that I wish I had written it all down as it was happening. Unfortunately, when we're in the midst of crisis, evaluation, diagnosis, meetings, and so on, all I can focus on his surfacing for air.
This past year, L's 2nd grade year, has been especially challenging and revealing. As we go along, especially in dealing with the school system, I hope to better document our journey.
How many times have you struggled; not knowing what to do; where to go next, to whom to talk, to finally be given an answer or shown a pathway, typically by another parent, that could have saved so much time, money, and heartache?
Currently, L. is very high functioning, with areas of more involvement and deficit. His primary struggles are poor executive functioning (self-regulation, impulse control); perspective taking (theory of mind); rigid thinking (literal); social relationships with peers; pragmatic language skills (reading facial expression). His strengths are in his curiosity for all information and new topics; absolute love for school and learning; loyalty to those for whom he considers family or friend; and a great memory.
L. currently has a 1:1 full time in school, in his regular ed. classroom.
Stay tuned for more specific information and personal events about life with a child with Asperger's.
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Snapshot....Independent Education Evaluation (IEE)
Independent Education Evaluation (IEE)! Why had I not heard about this until a desperate moment when I called a neuropsychologist for urgent advice about my son's down-spiraling behavior in school? Of course, I'm sure it's noted in the packet of IEP rules and reg.'s that we get at every IEP meeting, but it's not something I go through every year or each time I have an issue with services. As a teacher myself, and having worked in the special education field, I keep mistakenly thinking that I can navigate my way through this process with little assistance.
Anyway, my 2nd grader, L., with Asperger's had started on one of his bad cycles, as I call them. At home, but most horrifically at school, he was increasingly agitated, rigid in thought and behavior, seemingly defiant, and the list goes on. He is always like that but it was exacerbated. At school, he was with an experienced teacher, who at the beginning of the year knew little about Asperger's, but took it upon herself to learn about it. Though L. can be frustrating and trying, she truly appreciated him and was genuinely interested in his way of thinking and perceiving things. So, when she started to express a concern over his behaviors, beyond the typical daily issues, I got scared. She could see how anxious and agitated he was becoming and out of the best interest for him, would leave her class with the school secretary to take him outside and walk/run around the school.
So, one day, Teacher pulls me aside when I stop at school to give me the most recent update. For the life of me, I honestly can't remember what it was she said to me now. I've learned that I have to let go of all the negative once it's dealt with or it leads to an unhappy life. So, whatever it was spurred me to call the number of a neuropsych. L. sees a neurologist, but I was feeling like I needed more guidance about how to deal with his behaviors and what to tell the school.
Within 5 minutes, Neuropsych noted that though L.'s classroom teacher seemed phenomenal, there seemed to be little to no support for staff and child. True! She thought that Luke's issues sounded complicated and recommended an IEE. This would allow someone outside the school district to evaluate L. and make recommendations based solely on need and not on what the school system was capable of providing. Sounded good to me, but how much was this going to cost? Well, the school system COULD pay for it if warranted. Time to write a letter. Note: Put everything in writing.
Here's what happened:
1)Sent email to Special Ed. Director of the school district requesting an IEE and that the school district pay for it because "current evaluation is incomplete and/or lacking in that the effects of L.'s sensory issues and Asperger's like behaviors have not been addressed by a professional/expert in the field that can also address the pervasive educational implications." (sent on Monday night).
2)By Tuesday morning at 9, I had received an email from the school principal asking if we'd like to have a 1:1 for L. What?!!! I had mentioned this before to the team; predicting that the only solution would be to provide another adult in the classroom. Now, that a letter was written asking for an outside source to evaluate the situation, it was being offered.
3)My understanding is that after I wrote the letter requesting for the IEE, they had 10 days to respond. They either had to respond with a YES or a NO and it would go to due process.
4)They quickly responded with a yes.
5)So out of 1 email we got a 1:1 and an IEE payed for.
By the way, the IEE turned out to be very helpful and revealing to us, the parents, and for the school.
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Interview and Giveaway with Ellen Notbohm, autism mom and author of "1001 Great Ideas for Teaching and Raising Chldren with Autism or Aspeger's"
During the first week of school last year, Nick’s Kindergarten teacher walked up to me, and almost under her breath like we were about to share a secret she said, “Do you know of any good books on how to teach a child with Autism?”
And sheepishly I said, “No.” Quickly followed by, “Not off the top of my head, but let me look into it.”
I was disappointed that I didn’t have a go-to book to recommend. I should have immediately known what to suggest to her – something that would be succinct, easy to understand, quick to read, effortless to implement and even more important – well organized so that she could go back week after week and year after year to look up what she needed.
Well, it took me all school year, but I finally found my go-to book: 1001 Great Ideas for Teaching & Raising Children with Autism or Aspergers by Ellen Notbohm and Veronica Zysk – Not to mention a foreword by Temple Grandin, PhD who says the book is “Genuine, commonsense advice that all parents and educators can quickly and easily use!”
And who argues with Temple Grandin? Surely not me.
I asked Ellen Notbohm, who has also authored 10 Things Every Child with Autism Wishes You Knew, 10 Things Your Student With Autism Wishes You Knew and The Autism Trail Guide: Postcards from the Road Less Traveled, if she was available for an interview, and I was thrilled to have her say yes. I mean, really, this is a woman who has 1800 great ideas on how to help my kids – this rates right up there with a new handbag and a kid-free vacation for me!
Now, normally I’d say you should take notes, but with 1800 ideas jam packed into this book, Ellen can’t possibly rattle them all off here (no, really, she can’t). But, good news: Future Horizons has offered to give away a copy of her book! Look for details on how to win at the bottom of this post – or if you aren’t that patient (like me), hop on over to FutureHorizons.com and buy your own copy now.
Either way, you are in for a treat!
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Hartley: Welcome to HLW3B Ellen! I am so pleased to have you here today! Aside from being an award winning author and successful journalist, you are also the mother of sons with Autism and ADHD. Will you tell us a little about you and your family?
Ellen: And I am so pleased to have the opportunity to connect with HLW3B readers – thank you. My family lives in Oregon where my husband and I met while performing in an opera. My older son is a sports whiz who teaches and coaches children at a local community center, and my younger son is an aspiring filmmaker entering his senior year of high school. He’s interning this summer at the film school he’s attended in past years. Beyond my autism books, I’ve authored numerous family history articles for Ancestry magazine, am at work on a historical novel and have belonged to the same knitting circle for 22 years. I also enjoy baseball, chopping wood and griping about gardening.
Hartley: I have to start by saying that I was immediately drawn into your book 1001 Great Ideas because it is so simple to read and easy to apply. As the mother to three boys, two with challenges (but all *challenging*), it is easy for me to see how many of the ideas can stem from your own parenting experience, so aside from those experiences as a mother, where else did you get your inspiration?
Ellen: The book is set up to be the kind of reference a parent or teacher can go to for quick ideas on a specific issue, without having to read cover to cover. As my sons moved through school and through their developmental phases, I could see that that was the kind of help most frequently needed by both parents and teachers. Many of my sons’ teachers wanted to do everything within their power to help but didn’t have working knowledge or training in how the brain with autism learns – cognitively and socially. By accumulating the experiences of many teachers and parents in one book, everyone benefits from an aggregate body of knowledge.
Hartley: My favorite chapter is the one on Sensory (no shock there, right?). And I’d like to state for the record, I think “Twelve Signs of Sensory Overload” should be printed on posters and hung on classroom walls everywhere. Really. But for those who haven’t read the book yet, what other fresh sensory ideas does the book offer?
Ellen: Our overarching approach to sensory “therapy” is that we may be guided by an occupational therapist – and that is extremely important – but 99% of sensory activities are going to happen in the home, on an everyday, ongoing basis. So it’s important to realize that opportunities for sensory activities are all around us, all the time, and that sensory activities can and should be fun. Fun is the medium through which children learn best. Fun sensory activities don’t require expensive equipment or toy purchases (although the right ones can be good investments), but can be found in ordinary items such as boxes, balloons, bubbles, kitchen gadgets, straws, water, sand and sand alternatives, homemade clay, etc. The book offers hundreds of these kinds of ideas. Not only are they good for our kids but c’mon, admit it – it’s fun for us gr’ups to have an excuse to indulge our inner child. I loved playing with mud, shaving cream, rocks and other “stuff” with my kids.
Hartley: I also like the chapter on behavior – because that is the primary challenge at my house – so the advice is greatly appreciated! I was intrigued by the section “Don’t ask why”, honestly because I always assume if I could figure out why, then I could stop the behavior from happening. But, that is never the case. For my readers who haven’t got their hands on a copy of your book yet, will you give us a brief explanation of why you don’t ask why?
Ellen: Because your child may not be able to understand or articulate why. Asking a child to identify motivation for an act assumes a level of self-awareness and vocabulary that may be far beyond his or her current stage of development. Think about it – many adults are not capable of identifying reasons for their behavior, accepting responsibility for their behavior and taking steps to change behavior (hence the same old New Year’s resolutions, year after weary year). It’s far more constructive to first of all, ensure that the child understands what s/he did (don’t assume), involve him or her in a discussion (not lecture) about how to avoid the behavior in the future, and agree on consequences should it happen again.
Hartley: Your chapter about the relationship between parents and teachers is terrific as well – I believe that being able to see our children through the eyes of a teacher – and they through our eyes – can benefit both sides and help maintain a healthy team relationship. Give my parent readers your best tip on how to start fresh with their child’s new teacher this fall – and my teacher readers how to best get to know their new students with autism this coming year.
Ellen: The answer lies in your question – “start fresh.” Parent and teacher must give each other the courtesy of a clean slate. Parents, don’t overlay previous experiences, bad or good, on this new teacher. Teachers, you may have had previous experiences with children with autism, but this one is unique. Don’t overlay expectations for behavior problems , genius or social shortcomings on this child. A positive, team attitude and daily sharing of information between home and school is the foundation of setting the child up for success.
Hartley: For new parents, who are just starting out on the IEP/Special Education path, what is your best advice for laying the foundation during that first meeting as a means to establish a positive ongoing relationship with their child’s school?
Ellen: Approach your IEP/Special Ed team as just that – a partnership, not an adversarial face off. Keep in mind the definition of a team: all members working together toward a common goal. The goal in this team effort is the child’s success. It requires each member fulfilling their role, free sharing of information by all team members, leaving egos and personality differences at the door, respecting and working through the differences of opinion that will inevitably occur. In 1001 Great Ideas, we answer this question at length in a section called “Creating Positive Partnerships.” I also address it in Chapters 1 and 2 of Ten Things Your Student with Autism Wishes You Knew (“Learning is Circular” and “We are a Team).
Hartley: There are obviously too many Great Ideas in your book to go through them all – but which one stands out the most to you? Why?
Ellen: The hands-on, how-to tips and tactics in the book are action-oriented. But Veronica and I believe that attitude precedes and underlies action. My favorite Great Idea is the parable “A Word About ‘Normal’” at the end of Chapter 5 (“Thinking Social, Being Social”). In it, a middle school speech therapist advises a mom that, by looking around the school, she will see many kinds of “normal” – nerdy normal, artsy normal, techie normal, sporty normal, etc. The right social circle is the one in which a child can feel safe. Respecting a child’s individual social self as the right one for him liberates us from defining “normal” in any single way. [This is also available on Ellen's Facebook page]
Hartley: Thank you Ellen for taking the time to talk with me here today! I am very excited to share your book with my sons’ teachers (yes, all of them!) this coming fall – especially the Kindergarten teacher who asked me for a book – she gets the first copy! Truly, you are providing parents like me a fantastic resource that will help our children be more successful at home and in the classroom, and I personally thank you for that.
Ellen: It’s my honor to be part of the team – thank you!
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You can enter to win a copy of Ellen's book here, www.hartleysboys.com
Thanks,
Hartley
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Enabled Kids - Time to Grow
Our good friend Mari Nosal (M.Ed., CECE) just recently finished a poem that she shared with us on our blog, Enabled Kids. It talks about graduation and her son with Asperger's Syndrome. It would be really great if you could take a look and tell her what you think.
You can see the post here: http://www.enabledkids.ca/?p=665">http://www.enabledkids.ca/?p=665</a><br><br>Thanks everyone, and let us know if you have any questions or comments :)
-Enabled Kids
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FREE social skills group for adults with Asperger Syndrome!
I facilitate a FREE social skills group for adults with AS every 2nd and 4th Tuesday of the month in Akron, Ohio. Contact me at dianaray@theartofliving.us for more information and to reserve a spot in the group. We've been meeting since January 2011 and are still having fun while learning social skills!:) diana
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Haydn's World
Haydn's World is a blog that I write where I tell stories about my adventures raising my six year old son with Asperger Syndrome. Here is the first post. Sort of an introduction to how we do things in Haydn's World...
My son is way too cute to be my kid.
My wife says she sees my face in their. But I only see Daddy when he is about to
get into trouble. He gives me a little sideways glance and a crooked
smile, the "Imp Face," and I feel like I'm looking in a mirror. (One
that makes me appear to be much better looking and significantly
younger, of course) Otherwise, I don't see it. He is four years old,
wicked smart, silly beyond silly, probably quite a bit like most of the
kids you know or have known. Except for one thing. His "super power,"
as we like to call it. He has Asperger Syndrome (AS from now on, to
avoid embarrassing typos).
I am not going to spend 500 words trying to give you a detailed
definition of AS... Just Google it, read a hundred articles about it -
then I'll show you a kid nothing like the ones you read about. Once
you've met one kid with Asperger Syndrome... you've met one kid with
Asperger Syndrome. Just like any other child, mine didn't come with a
handbook, and I haven't found one in any book store.
Here is what you need to know for now:
Asperger Syndrome is a neuro-biological disorder on the higher end of the autism spectrum.
Kids with AS tend to exhibit serious deficiencies in social and
communication skills. They can also play piano with their feet, and are
very adept at juggling and like to watch gladiator movies. OK, that
last part may not necessarily apply to all Aspies (that's what they are
calling themselves these days), but I just wanted to see if you were
still reading. Some important things to understand right from the get go: - I am not an expert on AS. I am not trying to tell anyone how to raise a child with AS.
- I like to write, and my life has a little extra flavor from time to
time, so I am going to fill up pages and pages with my rambling nonsense
for the enjoyment of anyone who wants to take a look.
- Everything I write about is personal: My life, my family. No
preaching. No Aspie whisperers here. I am not claiming to be the man
with the answers.
- I am not going to ramble on about all the folks in history who MAY
have had AS (funny how they are always of major historical significance,
it's never the royal piss boy, or ye olde poop sweeper).
- I am just a dad raising a little boy who is a treasure to behold,
and I feel like sharing my experiences. He is an amazing kid... who
just happens to have Asperger Syndrome.
And here is a warning to potential readers:
If you are of the politically correct way of thinking, or
are particularly sensitive about anything, thanks for stopping by, but
you don't belong here. I am not shy about poking fun at myself, my life, or anything that floats across my radar.
Anything. I mean it. Anything.
As many of you are probably aware, being
a parent of an Aspie is just like being a parent of any other kid.
There is only one difference. EVERYTHING. Just kidding. This is all I
know, as far as being a parent goes, so there is nothing different, or
unusual about it.
I hope it will be as
entertaining to read about as it has been to live it.
By the way, if anything I write here helps a parent with a child like
mine, that would be great. But that would be a "happy accident," if I may quote the late, great Bob Ross.
I have no plan or outline for this
little endeavor. I just want to tell some stories.
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"Time To Check Places..." (Easter Weekend 2010)
My 4 year-old son, Haydn, is playing amongst his cousins in the backyard at Grandma's house. It's the Saturday before Easter.
That's what four year-old aspies do... they play among or near other kids. Social skills, like one-on-one conversation, and playing with their peers are a real challenge for these little guys. Haydn does little fly-by encounters, he runs through the games and tries to get involved a little, but on his own terms. Fortunately for Haydn, he is getting ABA, Occupational Therapy, Speech Therapy, and basic social skills training as a part of his IEP at school, so he is getting a little better at playing with others. A little. He has come very far, but still has a long way to go.
Anyway, I am sitting on the deck with my sister, Heather, and my Mom, as Haydn does his little kamikaze runs into the basketball games and other backyard shenanigans, when he suddenly breaks out of his flight pattern and runs straight to the shed (which is also an entrance to the garage). Under the railing of the deck I can see his little Imp Face eyeballing me as he grabs the doorknob.
"Haydn. What are you doing over there?"
"I need to check places."
"Let go of the doorknob, and go play with the kids. I don't want you going in there." You have to be very specific with an aspie
"Ok."
Sprinting back to the other kids with a smile on his face, I can tell this is not going to end anytime soon. I rejoin the conversation with the ladies, and out of the corner of my eye I see it: a blonde streak heading for the shed again.
"Haydn. Didn't I tell you to not to open the door?"
"Yes, Daddy-o." That's it. That's all I'm going to get. Still getting to know Haydn's alter ego, Captain Literal .
"Then why are you holding the door knob?"
"I need to check places."
"Go back in the yard and play with the kids please."
"OK." Off he goes, soon to return.
Hours of this game. Five minutes of conversation interrupted by this wacky little monkey who needs to "check places."
Over and over and over.
Finally, I decided it is time to use one of the oldest Daddy tricks in the book. I will give in, allow him to check places, and by eliminating the challenge and game-like element of this nonsense, he will get bored and go play with the kids. Reverse psychology 101.
Start engraving my plaque: "Father of the Effing Year 2010.
"Haydn."
"Yes Daddy-o?"
"Would you please go check places for me?" Blue eyes widen.
I have his attention, my plan is working beautifully.
"I would really like it if you would go check places for me."
He starts doing what I call his Stiminy Cricket happy dance, hands flapping (A little stimming. We'll talk about that at a later date), his little mind no match for the awesome might of my Daddy genius.
"Nothing would make me happier than having you check places for me. I really need to know if it's alright in there."
I'd like to thank the Academy...
Off like a shot, he runs to the door, blows through it like a toddler tornado, disappears into the dark bowels of "places," and reappears about a minute later.
According to my plan, the novelty of the game wears off, Haydn goes to play, and I can finish my conversation.
WRONG.
I have told a child who interprets everything literally, that I WANT him to check places. That nothing would MAKE ME HAPPIER than having him check places.
I am an idiot.
I have let the lion out of the cage and covered everyone in barbecue sauce.
Guided tours to go check the places commence shortly thereafter, and continue through the rest of the day and will continue all day on Easter Sunday. All of the kids and all of the adults, receive the privilege of going to check places.
By the way, when you go check places, you walk into the garage with Haydn in order to look at a single light bulb hanging from the garage door opener, and bask in it's awesomeness.
Doesn't sound too exciting, but you do get to hang out with the cutest, funniest, most interesting little dude you'll ever meet.
Until next time,
Gotta go - Time to check places...
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The Literal Contrarian (Or, how to lose an argument to a 4 year old aspie... every time
This is a story I wrote about my son, Haydn about a year ago. He has come a long way since then...
But it is always fun to take a trip back and remember the good old days of madness, clueless parenting, and laughs, laughs, laughs. (not all that different from today when you really think about it)
Enjoy...
The Literal Contrarian
As I have mentioned before, Haydn is learning conversation as a second language, and the more insight I can get into his way of thinking, the easier it will be for me to help him. Our disagreements have peeled the curtain back a little bit more...
It's a fairly simple scenario. I want Haydn to do something. Haydn doesn't want to do it, so he must argue with me. (Like father, like son)
"Haydn, I need you to finish your puzzle. When you finish, we can go to the mall."
"Daddy-o, time go to the mall now?"
"No, Haydn we'll go in a little while... after you finish the puzzle."
"Wanna go in a BIG while??!!!"
There it is. End of discussion. “A BIG while?" Where do I go from there?
How about this one:
"Haydn, you can't have any more ice pops today. You are going to eat them all up, and we won't have any for tomorrow."
"Gonna eat them DOWN today??!!!"
I don't even know what that means.
If my son disagrees with me, he simply takes the literal opposite meaning of part of what I have said, and throws it back at me. He unloads this potent piece of verbal artillery with an odd, rather loud, question/exclamation inflection.
A quexclamation...
I can't ever predict what part will get turned around on me. Sometimes it's a verb, sometimes a noun... it could be anything. And that is what makes the quexclamation a most lethal way of arguing. There is no anticipating the response. No preparing any type of retort. It is one of the few times that Haydn is completely focused on the topic at hand, and he is so serious and forceful in his quexclamation, that I soon come to realize that he has to be right and I clearly must be wrong.
So what did we learn today?
Haydn's quexclamations show us that he is even more of a literal thinker than we had considered. He sees things strictly at face value. There is no reading between the lines with this kid. In fact, if it's not RIGHT ON THE LINE, he will probably miss it. On the other hand, his vocabulary is pretty substantial, since he seems to know the opposite meaning of at least one word in every single statement I make to him. He is a master of adverbs and adjectives and is a very quick thinker who can manufacture a contrary quexclamation almost instantly.
Over time, we will help Haydn understand, in his own way, the subtlety of language, and I have no doubt that one day he will be able to work and manipulate the language to express everything that is going inside that magnificent little mind of his.
Some day soon, in the not too distant future.
But for now the real question is...
How does one argue with someone who wields the quexclamation so effectively?
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Control Freak... or all I got for Christmas is some OCD (December 2010)
My son, Haydn is a control freak.
He has a diagnosis of Asperger Syndrome, and of course, OCD is riding shotgun with his diagnosis.
OCD is a nice medical, technical, smarty-pants term... But I am not a medical, technical, smarty pants kind of Dad.
So, as I said before...
My son, Haydn is a control freak.
During dinner, I decide to offer Haydn a biscuit. The following conversation ensues:
"The biscuit is not for the boy!"
"That's fine Haydn."
"I'm not going to eat bis..."
"I don't know what that means Haydn."
"This is not the biscuit room!!" (That's one way of putting it...)
"That's fine Haydn. But, I want you to keep the biscuit on your plate. You don't have to eat it, but it stays on your plate."
A ten to fifteen minute stand-off follows until the innate need to feed diffuses the argument and he eats his dinner with the biscuit riding side-saddle on his plate. (Can't make this stuff up)
Haydn - 1... OCD - 0
Haydn tries to have a certain amount of control over as many elements of his life as he can. The "Biscuit Incident" is a perfect example. He doesn't want to eat the biscuit because it isn't pasta or an ice pop (like any other five year-old). Then he uses his Haydn-spective and decides that since the biscuit is something he won't eat, so there is no reason for it to be on the plate.
But it is not only the layout of a dinner plate that Haydn feels he must control. He tries to control topics of conversation. His pragmatic language skills are not great, so by keeping you on a topic of his choosing will eliminate the unpredictable and make things easier for him. In fact, he can take any conversation, and within one or two exchanges bring it to the topic of his choosing... usually fans. He dressed himself in nothing but gray or black for over a month without our noticing. (Hey, at least he was dressing himself). He likes to keep the balance of random objects (both lamps on or off if two are in a room, or both visors up or down in the car...). He tries to travel the same the path when he walks through a park, zoo, or mall. He wants the order of the play list when he is listening to his music to stay the same. He tries to maintain a certain predictability to his life which seems to calm him. It is my thought that eliminating the unpredictable elements in his life makes it easier for him to deal with the intense sensory stimulation and social challenges he must deal with. Unfortunately for him, his Daddy-o does not let him have any of these things, so Mr. Haydn needs to find other ways to cope. Which leads to some difficult situations from time to time.
When he gets himself worked up over something like this it, can be a bit of a trick to get him off topic and out of the mental loop he settles into. Since we can't just beat him with a stick (joke...) we need to use calm, repetitive statements, always keeping an even keel and under no circumstances should we yell. It just hurts his ears. (Having released the Kraken on him a few too many times in the early days, I can tell you it just makes him cry and draws him into his own head, and leaves me feeling like a total jerk)
Often we just remove him from the scene of the crime and let him reset himself (that's the big one - more often than not, he can do it himself if we can get him into a quiet corner, or a different room).
Everywhere we go, I try to be conscious of the doors we go in, the paths we take when we walk around, even the route we take in the car. I mix things up as much as possible, avoiding any patterns or schedules whenever I can. He is getting pretty good at handling the change-ups and mix-ups I throw at him, (He doesn't really have a choice. The rule is - deal with it, or we go home) he has really learned to adapt on the fly and we have been able to avoid any problematic situations.
But, during the weeks leading up to Christmas...
Daddy-o screws up.
Haydn and I spend a few nights during the weeks preceding Christmas running to the mall and doing some shopping. We park in the garage, run into the mall, grab a few things and leave. During a two week stretch we probably spend two or three nights a week getting the last minute stuff done. Five, maybe six trips. I do not pay attention to the routine, do not mix things up, and every time we enter, Haydn hits the handicap button to open the door (and loves it). Two days after Christmas, Haydn, Mommy and I go to the mall to exchange a gift. I park in the same spot, we enter the same door, and...
The button doesn't work.
Haydn pretty much loses his mind over this. He starts to cry, yelling at the two of us;
"We need to push the button."
"I have to use my button hand."
He throws himself on the floor, against the wall, and will not move. He keeps yelling and crying and really makes a good show of it, when Mommy steps in and:
"Haydn, do you have a boo boo?"
"No I do not, Mommy."
"Haydn, are you hurt from the button not working."
"No I am not Mommy."
"If you don't have a boo-boo, and are not hurt, then why are you crying?"
"I want to use the button door."
"Well, the button is broken, but we are inside the mall now. Do you want to stay and have fun, or should we go home because the button is broken?"
"I want to stay."
Mommy saves the day, and Haydn learns a little lesson.
And the button is no longer an issue.
This particular incident is an important reminder to Mommy and me, that for the time being, we must always keep an eye on Haydn's behaviors. It did not take long for the button hunger to sink it's teeth into him. He settles so quickly and easily into routines that if left to his own devices he will embrace them and become dependent. From the outside looking in it probably looks like over-parenting and micro-managing, but it is critical to put an end to potentially harmful behavior before it becomes ingrained in his thought process.
"The Incident of the Broken Handicap Access Button," (sounds like a bad Hardy Boys title) reminds us that although we have had many successes, and we have had a lot of laughs, and our little man Haydn is doing extremely well, we can not get lazy, because it is so easy to stumble and veer off track. Everything we do now, is to help him five, ten, twenty years down the road.
All important things to consider. However, there is one thing, as a result of this experience, that haunts me at night and irritates me to no end.
We live in the 21st century. Shouldn't ALL doors open and close automatically? Can we please, just lose the damn buttons?
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The Incident at The Children's Place (Fall 2010)
Hi there boys and girls. Here is a little story about a temporary loss of self control, some suspect daddy-ing and a little Greek mythology thrown in for good measure. A little exercise in madness I like to call:
"The Incident at The Children's Place"
It's Thursday night and it's time to take a little trip out to the mall to buy some warmer clothes for Haydn. We walk into The Children's Place and Haydn immediately needs to use the potty. Mommy starts looking for clothes while we go check out the bathroom. He goes into the stall alone, comes out and washes his hands. Now it's time to go shopping.
We walk out of the bathroom and I turn to the left and look for Mommy, when what to my wondering eyes should appear?
Absolutely nothing.
All the lights in the store black out for a few seconds.
I spin around and find my son peeking out from behind two big stacks of boxes and a cart overloaded with mops and cleaning products. His hand is on a large breaker switch. Somehow, during the nine and a half seconds I was turned away from him, he has found and turned off the main power switch for the entire store. An impressive bit of work, and definitely one of those moments where being cute saved his life.
"Daddy-o, are you mad?"
"Yeah, a little bit. I think you and I need to leave the store right now."
"Daddy-o, you're mouth is closed."
That's just so I don't say something I'll regret
"Haydn, we are leaving this store NOW."
"Daddy-o, are you mad?"
"A little bit, and getting madder. Let's go."
Under normal circumstances I would take Haydn home. Do not pass GO, do not collect $200. I generally give him a great deal of freedom when we go out, but he has to follow the rules and behave appropriately. I may give him one get out of jail free card from time to time, but rules are rules and he knows he has to follow them. Or we go home. Every time.
But today, Mommy is with us, and he really needs new school clothes, so I must improvise and use my superior Daddy skills to handle the situation.
He gets in the jog stroller, and I silently push him to the car.
Why do I suddenly feel a little like Sisyphus pushing that big old rock up the hill?
When we get to the car, I strap him into his seat, settle into the driver seat and plot my strategy.
The rock is rolling smoothly towards the top of the hill...
"Daddy-o, I want to go back in the mall."
"Haydn. We are not going to talk for a few minutes."
I stare at the wall of the parking garage and ignore him. I realize that, although this behavior is unacceptable, it was an isolated incident - a momentary loss of what is normally excellent self control. I just need to be firm and we will have a quality conversation concerning the incident and...
"Daddy-o. Please help me."
I am still ignoring him, staring at the wall and playing the role of the pissed off Daddy.
"Daddy-o. Please help me with the seat."
A little slower, but the rock is still working it's way up that hill...
I turn around and my son is hanging out of his car seat. He has positioned himself into some sort of twisted car-seat yoga pose - He has one leg strapped in his seat while he balances gingerly on his free leg. His hands are pushing against the front seat in what appears to be an attempt to keep from falling over and preventing his extremities from popping off his body and bouncing all over the car. And, of course, he has a big old smile on his face.
(Must be strong! Resist the cuteness! You are the Daddy, you can do this...)
I reach back and set him free. He pulls his trapped leg loose and climbs into the passenger seat. During his “workout," I have formulated my strategy, and I am prepared to Daddy the crap out of this kid. I will wield my spectrum-child mastery, work in a little pragmatic language work, and remind him of the ramifications of public switch-y-ness.
"Haydn. Do you know why we came out to the car?"
He reaches for the rear-view mirror and starts flipping it up and down.
"Haydn. Hands still. Do you know why we came out to the car?"
"Yes, Daddy-o."
That’s all I’m going to get out of that question. Once again his literal mind rears it's ugly head... as he pushes the power button on the stereo with one hand and pretty much every other button with the other.
Our rock appears to be slowing down considerably...
"Haydn! Hands still. Please tell me why I got mad in the store."
The hazards are now on and Haydn is repeatedly pushing in and ejecting the cd.
"Haydn! Hands still. I want you to look at me, and please tell me why I got mad at you in the mall."
Or just honk the horn and flick the key chain why don't you. Not trying to get anything productive done here.
Not a lot of movement by our friend the rock at the moment...
"Haydn! Hands still.”
That part is from school and actually works. Nothing I have come up with today has accomplished much of anything... might as well steal their moves.
“I know that looking at my eyes makes your head hurt. You can look at my nose..."
He puts his finger right up my nose.
"Please don't touch my face. Hands to yourself. You know the rule. You just need to have your face looking at mine. Look at my eyebrows or forehead..."
He pokes me right in the eye.
"Hey Daddy-o, you have two eyebrowses."
"I'm well aware of that, Haydn."
Down goes Frazier! Anybody seen my rock?
Twenty minutes of this Spectrum Sisyphean Challenge has officially gotten the best of me, so I do my best to salvage the situation.
"Haydn. Look at me for a minute. I got mad and we left the mall because you CAN NOT EVER..."
"Play with the lights. I'm sorry Daddy-o."
I'm not sure that I even had anything to do with this resolution, but at least we can get out of the damn car now.
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Halloween 2010 - Trick or Treat... or Train Wreck
"Trick or Treat!"
"Thank You!"
"Happy Halloween!"
This is the script for Halloween this year. I suppose my first clue that this is something Haydn is not particularly comfortable with, should be the fact that he has created a script. He tends to script and break down into steps any activity that stresses him out. It eliminates as many unpredictable elements as possible, and helps him finish what he starts. (One of the primary rules in Haydn's World: Finish What You Start!)
Halloween is not, nor has it ever been a holiday that Haydn particularly enjoys. It also turns out that Halloween is not a holiday that his Daddy particularly enjoyed. I didn't like to wear costumes (neither does Haydn), I hated masks (as does Haydn) and I didn't like to trick or treat because, among other things, I do not like candy. (Strike three... storm clouds on the horizon). So Haydn has been dealt a double whammy as far as Halloween goes: A genetic predisposition to dislike costumes and trick or treating (my blog - my science), and Asperger Syndrome and all the social anxieties and sensory issues that go along with it.
So, of course, I want to put him in a costume and take him trick or treating.
My plan for Halloween this year is simple: The entire weekend is dedicated to creating the most fun Halloween ever - each step priming Haydn for an awesome trick or treating extravaganza.
The first thing on the itinerary of Halloween Awesome-ness 2010, is a visit to the Halloween Street: A place where most of the houses are decorated and the street is closed to traffic for safe Halloween fun. He loves it. There are ghosts and skeletons, there are houses with lawns full of Disney characters. There are smoke machines and strobe lights, even a Willy Wonka themed house. The place is awesome. Mommy loves Halloween and takes charge of the evening, and Haydn has a fantastic time.
The next day is Halloween. Haydn and I go out for breakfast, then go to buy our pumpkins. We walk through the store and go out back to find a canvas for our jack-o-lantern artistry. I don't see any pumpkins at first. I see a lot of gourds, squash, and other pumpkin relatives on the first few tables. There are some plants, a few little trees, but nothing we can carve. I peer over the winter plantings and I see a table about twenty feet away, littered with objects of that familiar orange color. Success!
The pumpkins look great from across the yard, but seem to be losing their pumpkin-ness the closer we get. We arrive at the table, and piled carelessly at the end are the "pumpkins." They are lumpy, a little squishy, and seem to have some real wear to their hides. It looks as though these miserable "pumpkins" have been braving the elements for months, waiting for someone to give them a home. There are a couple of roundish ones, a square one, and several that appear to be dying of some kind of pumpkin melanoma.
Haydn eyes the table of misfit "pumpkins" and starts his analysis:
"Daddy-o, that pumpkin looks wet."
"Thanks for noticing Haydn."
"We need to get a sphere pumpkin."
"I don't see any, but these look like they will do the job" (liar)
"Why is that pumpkin brown?"
"That's a pie pumpkin, we can't make a jack-o-lantern out of that one." (lies, lies, lies...)
"We going to make a jack-o-lantern out of these pumpkins?"
"We are certainly going to try little man." (why is there never a fan around when I need one?)
We pick the only two that can stand under their own power and load them into our shopping cart. We park the shopping cart by the side of the building (shouldn't have to worry about anyone making off with our cart of slug bait) and check out the rest of the farm. There is a little petting zoo, and some photo cutouts, and a little haunted house - if you dare...
We chase each other around and laugh at the haunted house. We take some pictures, and talk a little about the Hoberman Sphere. (another story for another day) Haydn feeds a few goats, and with the exception of a brief investigation into the electrical workings of one of the barns, we have a very "neuro-typical" morning. We pay for the "pumpkins," pick up Mommy, and go to Grandma's house to carve and paint them.
Incidentally, I did learn one very important thing about Halloween: Buying "pumpkins" on the morning of Halloween saves you exactly no money. I spent $35 on a couple of lumpy orange footballs. Just a little shopping tip for all the families out there.
We set up shop at Grandma's house and get to work on the "pumpkins." He draws a face and we carve it up. We pull the guts out of the pumpkin, he throws a little at me, and a pumpkin guts skirmish breaks out. We all have a fun afternoon. Probably not too different from your Halloween. Mommy creates her annual masterpiece, and now it's time to trick or treat.
He doesn't want to wear the costume.
Hey genius, remember how much we all love Halloween?
He just isn't having it. Instead of leaving well enough alone, I convince him to wear his awesome Iron Man suit with the light on the chest, and tell him that I will wear the mask. We are dressed as Iron Man and his hat rack. We gather up his entourage at our apartment, and Mommy, Daddy, Haydn, Grandma, Grandpa, and Nanny are ready to trick or treat. We decide to take him primarily to homes of people he knows, get him some candy, and get him home.
He goes up his first apartment:
"TrickorTreatThankYouHappyHalloween!"
A little nervous. No problem, a little pep talk, a few minutes of re-focusing and he is ready to go. Now the Halloween magic will begin.
We go to a few apartments in our complex and he does a great job. There are very few kids moving at his snail's pace, so he tends to have the porch to himself. Confidence building, Haydn decides he wants to go trick or treat at the house of his bus aide. Instead of taking him directly to trick or treat at a friendly place, I decide to have him work his way down the street. (You would think I never met this kid before...)
We approach the first house. He slowly walks up the path to the steps and I can see him reciting his little speech under his breath, steeling himself to the task. He gets to the steps and about ten kids run by him and storm the door. To his credit, he makes it up the stairs to the landing, where he freezes. His eyes start darting around, looking for something to focus on, anything but this Halloween nightmare he has walked into. We lock eyes for a second and I see he is overwhelmed and extremely anxious. He does not know what to do next.
"It's ok Haydn. You can do this."
Nothing. He looks so lost up there. I just want to grab him and give him a hug, but I can't do that. If I go and rescue him, I am reinforcing what he is already thinking: That he is currently in a situation that is too difficult for him, and he can't handle it on is own. I don't think there is any situation that he can't handle, and I want him to feel the same way. Some scenarios may take more work and preparation, but he can do anything. Of course, he didn't even want to do this, so this whole train wreck is my fault.
I have to try to get out him of the moment so he can get himself back on track.
Steps. He knows steps. Everything he does in his life, he breaks down into steps. Whenever he has to so something that is difficult for him, he breaks it down into steps, and he gets through it. (not bad for a five year old)
"Take a breath and remember Step 1."
His eyes slow down and he looks right at me. He is quietly talking to himself - most likely running through the steps required to successfully trick or treat.
"You can wait until everyone leaves if you want to. Then do Step 1."
I figure he will stand behind the door and wait for the madness to calm down, but instead, he gets in line behind the other kids, waits his turn, and gets his treats.
Working within a group of his peers is very difficult for him. It's one of the biggest challenges for a child with Asperger Syndrome. Interpersonal communication is also very tough, as is any situation where spontaneous conversation or social interaction can spring up, (pretty much everything about Halloween and trick or treating is a straight up nightmare for the poor kid), and he managed to get himself back on track in the middle of the madness, and finish what he started. And he's only five years old! (dramatic musical crescendo... close-up of Haydn's smiling face... Cut to proud Daddy)
This is a very significant achievement for him, and I want to let him know how awesome he is, and how proud I am. I want to give him a big hug, or a high five, a kiss, a giant fan...
He thanks the lady at the door, and turns to walk back to his entourage. He has a little spring in his step as he walks down the steps. I think he knows that he has achieved something significant. I think he realizes he should be proud of himself. I think he wants to share this moment with his Daddy. He is walking towards me and I can't wait to pick him up and give him a big hug.
He comes to the end of the path and stops right in front of me for a second and looks me right in the eyes (He doesn't lock eyes with anyone very often, so when he does it's pretty powerful), then...
He runs to Grandma for a hug. He grabs her hand and leads her away from me, and this accursed porch.
I think next year we'll skip the trick or treating.
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Some Thoughts on Stimming (winter 2011)
This is a little story I wrote last winter about my son Haydn and his stimming. I preface this one with his:
I am not an expert on Asperger Syndrome, or anything related to it (Pretty obvious, I would think... but, I just wanted to clarify). I am just trying to figure this thing out with my son, and I like to share our adventures. I hope you enjoy this little sojourn into the world of 'stimming.'
"Stimming" (in quotes for the last time in this story) is fairly common to the autism spectrum. There are a hundred different definitions in a hundred different books and they all are probably correct. I don't believe a simple definition can sum up everything that stimming is, and does, for people on the autism spectrum.
Here is a 'text-book' definition:
Stimming is a repetitive body movement that self-stimulates one or more senses in a regulated manner.
That's a pretty broad definition. Nothing about the how or why of the beast. Nothing particularly helpful at all.
Now that we've confused things nicely, let's talk about my son Haydn's stimming.
Haydn (for those who are new to "Haydn's World") is my five year old son. He is always silly, often brilliant, and way too cute to be my kid. Two years ago he was diagnosed with Asperger Syndrome. Along with his super-power (that's what we call it) come the usual band of villains - sensory processing disorder, pragmatic language deficiency, o.c.d., proprioceptive dysfunction, social anxiety... stop me if you've heard this one before. One of the coping techniques that seems to be easy for little guys like Haydn to pick up on, is stimming.
Haydn starts stimming at a young age. He takes the lids off of boxes and containers and spins them like a top. He grabs his little trucks and cars spins their wheels endlessly. My initial reaction is, "My boy's a genius. He can make a toy out of anything!" (Ah, the days of my blissful ignorance)
The spinning progresses to where he begins to disassemble toys in order to find a part to spin.
Small warning bells going off now.
Haydn is about two and a half to three years old, when light switches make their entrance. He NEEDS to flip light switches. He cannot help himself. I think he uses the light switches as a tool to calm himself while he gets acclimated to a new environment. He walks the perimeter of every room, hugging the walls and checking out the switches, everywhere he goes. He walks from room to room, and flips light switches on and off, slowly working his way through the entire house. It takes about fifteen minutes and then he is ready to barely engage the people in the house.
We have spent hours upon hours working on controlling this impulse, and after about three hundred years we have helped him to understand and regulate it a little bit. He no longer walks the perimeter of new rooms, and he does not flip switches. Every once in a while he falls off the wagon, but he more or less has this one under control.
Because stimming is a significant part of his behavioral make-up, he and I have talked about it at length (simple terms, he is only five) and I have tried to explain to him what it means, and why he does it.
But every time you think you've got it figured out... something new pops up.
More overt physical stimming has revealed itself as Haydn has gotten older. He has started "flapping his wings," as he calls it, when he is a heightened sensory environment (any place that is very crowded or loud). He is starting to wiggle around and hop around more, and sometimes, he spins himself around (and around, and around...) in circles when he gets overly excited.
On a very rare occasion, he will kick it old school and take it to the light switches, or grab an object and give it a good spin. More often than not, he will just sit and WATCH a fan or toy spin, all the while making grand proclamations concerning the awesome-ness of that which is spinning, and always making sure to tell us four or ten times.
The stim-beast is always lurking in the shadows of Haydn's life, and will make an appearance anywhere, at any time. He and I recently went to a favorite store of his to look at some potential gifts for Christmas, and he spent the first few minutes staring at a spin-art toy as it circled round and round.
"Haydn, what are you doing over there?"
"I'm stimming on the spin-art, Daddy-o." Of course you are...
He's becoming very self-aware in his old age.
In Haydn's world there are two types of stimming. There is stimming that can be ignored, or passed off as "normal" behavior, (looking at fans, watching wheels spin, spinning yourself in circles, snapping his fingers, etc.), and there is stimming that is stigmatizing behavior - "STIGMING." (my word, learn to love it)
In Haydn's World, appropriate stimming is not discouraged. I know that when he starts to stim, there is usually a pretty good reason for it, and finding the cause of the stress is more important to me than the behavior. I will talk with him, and try to pin-point the source of his stress, and when we find it, figure how we can deal with it. Haydn, like most Aspies, has some pragmatic language deficiencies, so getting to the point can take a little time and patience, but we usually get our answers. As far as behavior goes, if any other kid would do it, Haydn can do it. It's that simple. If it looks a little odd, we try to get it under control. One of our principal concerns in Haydn's World, is perception. We are constantly attempting to decipher how Haydn perceives things and, help to shape how everyone else perceives him. I find it unfortunate that I have to spend so much time worrying about what other people may think, but as a child, how you behave pretty much defines who you are to your peers. They are too young and too impatient to take the time to learn what a wonderful person you are... most judgment seems to happen in those first few minutes.
So stimming is acceptable in our world. As long as he doesn't freak out the neuro-typical kids (the typpies (rhymes with hippies), as we like to call them) or their moms (usually more of an issue than the kids at this point), he can do whatever he needs to do.
Stigming, is the type of behavior that will make another five year old stop and stare. Flapping, twitching, flipping switches, EXCESSIVE spinning in circles, eating paper (I guess he's got a little goat in him), anything that will make another kid (or his annoying parents) stop what he is doing and start nosing around in Haydn's business, or worse, ask him what he's doing. (It's cool if the kids ask, but I usually tell the parents not to stare or they will catch what Haydn has and give it to their kids... They never seem to get the joke).
Haydn is pretty good at controlling his impulses, but he IS only five years old. This type of self control is extremely difficult, and as he gets older, some of these behaviors, particularly the wing flapping are popping up a little more, so we've been working on some anti-stigming moves. The basic rule is: "Keep it low and slow." By this I mean, he needs to try to keep his movements down near his waist, and try to control them enough to slow it all down. If he keeps it "low and slow," it probably won't be noticed as readily.
It's been surprisingly effective...
We are walking though the main concourse at the Bergen Mall and Haydn is clearly having a moment. He is jumping and spinning a little more than usual, and the wings are primed and ready for take off.
"Haydn, are you alright?"
"My ears are bothering me Daddy-o."
"Would you like to get out of here for a minute?"
"No!" God forbid we leave the mall.
"What should we do?"
"Do you like the lights in the old gym?" Whoops, lost him.
Suddenly, the wings are out and Haydn is cleared for take-off.
"Are you sure you're OK, Haydn?"
"I'm not leaving the mall!" There he is! Back in the conversation
"I'd like you to try to keep the hands under control if you can."
"Do you like the Hello-Goodbye song?" Excuse me? The Beatles?
"Love it. Why don't you try to make a fist and hold it down low, when your wings start to flap. I don't want you to accidentally hit somebody in the face and give them a boo-boo."
"OK, Daddy-o." No reaction. Still flapping.
Haydn is a good boy, and the last thing he wants to do is hurt another kid. I don't want make him too self conscious of his stigming by making a big deal about the actual behavior. I just want to find something that motivates him to keep things under control a little, without embarrassing him.
The crowd is buzzing and the wings are really a-flapping. I try to help calm him down again.
"Haydn why don't you try making a..."
He starts to jump and hop and appears to be ready to flap his way to ceiling. It looks like he is actually going to explode out of his skin. Then he just stops. He starts to talk to himself very quietly. Knowing Haydn as well as I do, he is probably running through the steps necessary to calm himself down. Or he could just be talking about fans.
He keeps talking quietly under his breath, slowly lowers his arms down to his waist, and locks his fingers together. He looks at me with bright blue eyes...
"Hey Daddy-o, I locked up my wings."
"That's terrific Haydn. I am so proud of you."
There you go. He does it once (pretty much on his own!), he can do it again.
I watch him walk with his hands locked up for a few seconds, hopping and skipping a bit, huge smile on his face. He slowly releases his fingers and...
The wings have been put to rest.
"Hey Daddy-o, can we go to The Mickey Store now?"
"Of course, anything you want kiddo."
Haydn, the wing tamer, and his very proud Daddy-o walk into the Disney Store to check out some toys. It looks like Haydn is starting to develop a better understanding of who he is and how his mind works. He is getting better at controlling his impulses, he is figuring out how to solve these problems on his own, he is growing up right before my eyes, he...
Rips a label off of a Buzz Lightyear suitcase, stuffs it in his mouth and starts to eat it...
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The Science Fair (Winter 2011)
"What are all these kids doing in my store?"
Haydn and I walk into The Lakeshore Learning Store, a store that specializes in toys that Haydn loves. Puzzles, art supplies, learning and science toys, all kinds of building toys, they have it all and they leave them out for the kids to play with. It's never too crowded, and since we go there so often, the whole staff knows Haydn. On Saturdays they usually have craft sessions, which keeps the other kids busy while Haydn checks things out and plays with the toys.
Today, however, is the Science Fair, and there are parents and kids everywhere.
Haydn is not happy about this. The store is usually pretty quiet, and Haydn can explore and play at his leisure. Today, his routine has been completely disrupted. The store is nothing like he anticipated, and there is very little chance of anything going according to his plan. This disruption of the status quo is exactly the kind of thing we want for Haydn. Routines are like a narcotic to him. Once he finds one he is comfortable with, it can be very difficult getting him to deviate from it. So we pretty much smash routines on a daily basis. It annoys him to no end, but in the long run he will be better off.
Of course, I had no idea that there was going to be a Science Fair today. Another one of life's happy accidents.
After a quick trip to the bathroom, Haydn decides he wants to check the back of the store for a little while. It is a technique he has developed to ease himself into an unpredictable or challenging environment. He likes to find a quiet place (usually near the back, or a bathroom) and start exploring, gradually working his way into the crowd. It does not take too long anymore, and it seems to help him control some of his more typical aspie behaviors (flapping, spinning, hopping, etc.)
He rummages through some boxes in the rear of the store and drags out a horribly uncomfortable, blue rock of a chair - faded vinyl, lumpy, stained and scratched up. I can't believe they have the nerve to put a price tag on the thing. Of course, Haydn loves this piece of vinyl nastiness. He settles onto his new throne and prepares to "make some decrees." (Thanks, Mr. Jim)
Haydn's decrees are powerful statements delivered in his "serious voice" (not much different from his regular voice, just filled with a supreme authoritative conviction) with a strongly pointed finger for emphasis. He is totally serious when decreeing, and will get the decree hand, "THE DE-CREER," if you will, right in your face.
Still working on "de-creer" etiquette...
The topics of his decrees vary: ranging from the fairly dull and boring, to the fairly dull and boring, but they are delivered with such panache, that for a brief moment, his observations about lights, fans, and bathrooms can seem as important as the state of the union address.
Well, at least they are to Haydn...
"Hey Daddy-o, that looks like my school calendar!"
"Look at the fish by June!"
"Those are compact fluorescent bulbs in the lights up there. Yes they are."
"Hey Daddy-o, don't go in the private room!"
"Daddy-o, I think a girl sings the song in the speakers."
"I think they have the space mobile here."
"I like this blue chair. Yes I do."
After about twenty minutes, feeling a little over-decreed, I decide it's time to check out the rest of the store.
Haydn is sitting on his awful blue chair holding the "school calendar."
"Haydn, would you like to go up to the front of the store and check out the experiments?"
"Yes I would."
He continues to sit and read his calendar.
"Haydn, it's time to go to the front and check out the experiments."
"OK, Daddy-o. Let's check it out." Captain Literal strikes again
Thus begins the long journey to the front of the store.
"Daddy-o, can we buy my chair?"
"I don't think so. It's a pretty nasty looking chair."
"I love this chair. Yes I do. I think we should buy this chair."
"Not today, Mr. Haydn."
"Is this the mister chair?"
"Let's forget about the chair and go to the front of the store."
"It's OK Daddy-o. Let's go check the front."
We try to work our way towards the front, but we must pause to spin a few globes and talk about where New Jersey and West Virginia are located. We simply have to check the solar system models out and talk about our favorite planets. He insists upon a quick check of the magnetic writing boards, then a little gear spinning, followed by a few minutes chatting up the staff (We come here quite often and everyone knows Haydn).
Everything I love about this store is preventing me from getting to the damn Science Fair. The toys are fantastic, and even I can't resist stopping and checking them out as we walk. I look away for a second and the little imp tries to make a sneaky retreat to the back of the store and his awful blue chair.
"Haydn. We are done with the back of the store. It's time to go to the front."
"It's OK, Daddy-o. You don't have to be mad."
Not sure where the 'it's OK' thing came from
"I'm not mad, I just..."
Am I really about to try to reason with this kid?
"Let's get moving. Walk with me please."
Finally, we get to the front of the store and the "Science Fair." There are three tables are set up with microscopes and magnifying glasses, magnetic experiments, a volcano... lots of cool stuff for a little five year old to destroy.
"Hey Daddy-o, what's in that water over there?"
"I don't know, Haydn. Walk over and ask that guy over there."
He runs over to the table, puts "the de-creer," right in the young man's face...
"Excuuuuse me! What's in that water?"
"That's called space..." Too slow, he's already on to the next table...
I stop him for a minute.
"Haydn. You can not put your hand in other people's faces. You have to keep it low, so you don't poke them in eye. A gentleman always keeps his hands low."
For some reason the gentleman thing seems to work
"It's OK, Daddy-o. Keep... The... Hands... Low!" Little mini decree...
I turn him loose and try to fade as far out of the picture as I can. I don't want to play any role in his peer play time if I can help it. He always makes sure he can see me, but I am hoping to otherwise be ignored.
He sets up at the next table and looks through a two-way magnifier.
"Wow! That's a great big spider!"
"Hey Daddy-o! That's a great big spider!"
"That's great Haydn. May I take a look."
"No. This is just for Haydn. Whoa! That IS a great big spider!"
Haydn observes and exclaims, exclaims and observes, and lets the whole store know of his discoveries. Suddenly he stops, sprints back to the first table, and whips out "the de-creer." Again...
"Excuuuuse me! What's in that water?"
"That is called space sand. Would you like to touch..." Still too slow... he's gone again
This is, of course the funniest thing ever. Haydn is laughing so hard he starts to spin and almost knocks over a sand box full of dinosaur skeletons. After the impact, he picks up a skeleton, turns to the boy next to him...
"This is a Styracosaurus fossil. It's very small. It's not a real fossil. Styracosaurus is a big dinosaur."
A couple of boys are now interested. He reaches into the sandbox and grabs another.
"This is a Dimetrodon fossil. Dimetrodon is medium. He is not really a dinosaur."
One of the boys grabs a fossil and Haydn tells him,
"That is a Brachiosaurus fossil. Brachiosaurus is a great big dinosaur. He eats green plants."
I am so proud of Haydn. Although he is not really engaging in a back and forth conversation with the other kids, (OK, more like he is delivering a lecture - but let me have my moment) he is relaxed, talking about something all little boys like, his eye contact is pretty good, and they are all loving it.
Class is in and Haydn is teaching the other kids about dinosaurs, basically running the sandbox. He looks very grown up to me right now. A big boy.
Then my Little Professor reaches into the sandbox, grabs a sieve, holds it up over his head and dumps it.
"Daddy-o! I made a waterfall!"
"That looks like sand Haydn. Be careful with that thing."
"It IS sand. I made a SAND waterfall! Yes I did."
Sand is flying all over the sand box, a little on the other kids, a lot on him, but amazingly not on the floor. He is still leading the way, (goodbye Little Professor - hello Mr. Imp) and has all of his recruits making sand waterfalls. Unfortunately, the other kids are a little more wild with their sieves and the cascades are starting to sand up the floor a bit.
Having stirred up enough trouble at the sandbox, Haydn suddenly drops his sieve, spins around and runs back to the first table. Again.
Here comes "el de-creer,"
"Excuuuuse me! What's in that water?"
"That is space sand. Would you like to touch it?" Quicker delivery. The kid is getting better.
Haydn cracks up laughing again. Apparently there is nothing funnier than asking some poor soul the same question over, and over, and over again.
He shuts down the comedy club for a few minutes and heads back to the magnifier table, where a girl, about two years older than Haydn, is looking at some slides. He wants to get in on the action and look at the bugs, but is not sure where to start. I consider coaching him a little, but I don't want to embarrass him in front of the other kids. Besides, the only way to get good at social skills is to practice, practice, practice.
"Excuse me girl, do you like the spider when it's big?" Awkward, but effective
"I don't like spiders. I think spiders are gross. Spiders scare me."
"It's OK. That spider is not a real spider." Kind of sweet...
"Would you like to look through the left side, while I look at the right one?"
"Yes, I would like to look through the left side."
"What's your name?"
"My name is Haydn. I like this great big spider." Still a little awkward - but awesome
"My name is Kelly. I think I like the bee better than the spider."
"Do you like the space sand?" uh-oh
"I don't know what space sand is, Haydn."
And he's gone. Back to the first table.
Again.
"Excuuuuse me! What's in that water?"
"That's space sand..." The kid finally loses it, the power of "de-hand" overwhelms him, and he laughs so hard his eyes tear up.
Haydn is laughing too, but notices that the guy behind the table has tears in his eyes. He stops laughing.
"It's OK sand guy. Don't be sad."
"Thank you. I'm not sad. I'm OK. You're just very funny."
Haydn stands there for a minute with a very serious look on his face, happy that the space sand man is OK, but clearly confused by the tears. These are the times when I wish I could sneak a peek into that little mind of his, and see how he processes things. To really get some insight into the inner workings of the Asperger mind. Maybe he is pondering the paradox of laughing with tears. Maybe he is putting that powerful intellect of his to work, trying to solve the riddle of human emotions. Maybe. But for now I can only wonder...
He relaxes after a few minutes, looks right at me, flashes that impish grin, then quickly turns away...
"Excuuuuse me! What's in that water?"
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