Thursday, January 23, 2014
Wednesday, October 12, 2011
Here's Some Great Info!
From the book:
“Ten Things Every Child With Autism Wishes You Knew” by Ellen Notbohm
It begins……
As a mother of a very young child with autism, one of the first things I learned was that on some days, the only predictable thing about it is the unpredictability; the only consistent attribute-the inconsistency. There is little argument on any level that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal”, but his behavior can be perplexing and downright difficult.
Autism was once thought an “incurable disorder”, but that notion is crumbling in the face of knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging aspects as par of their fulfilling and dynamic lives. Some even seek to do away with the notion of “cure”. In a widely read New York Times article in December 2004, Jack Thomas, a 10th grader with Asperger’s Syndrome, got the world’s attention by stating: “We don’t have a disease, so we can’t be ‘cured’. This is just the way we are.”
Jack and I are on the same page here: when “neuro-typicals” frame the challenges of autism in neuro-typical terms, they unwittingly close the door to the kind of alternative thinking that has everything to do with how far those with ASD can go.
This is the mantra of my column, “Postcards from the Road Less Traveled” (Autism Asperger’s Digest). In a 2005 column, I asked parents to jot down brief descriptions of some of their child’s most challenging behaviors, and then to rephrase them in the positive. Is the child stand-offish, or able to entertain herself and work well independently? Is she reckless, or adventuresome and willing to try new experiences? Is she obsessively neat, or does she have outstanding organizational skills? Does she pester you with endless questions, or does she have a curiosity about her world as well as tenacity and persistence? Why do we try to fix the kid who “perseverates” but admire the one who “perseveres?” Both are forms of the same word meaning “refuses to stop.”
Here’s the one I hate the most: Does your child “suffer from autism”, or does he “live with autism?”
Choose “life” over “suffering”.
The column is called “Postcards from the Road Less Traveled” because my editor, Veronica Zysk, and I thought the connection to Robert Frost’s poem was apt.
Two roads diverged in a wood, and I –
I took the one less traveled by,
And that has made all the difference.
One reader disagreed: “Postcards are from people who are having a good time on a trip. I’m not sure if that’s what you want to portray.”
I think postcards are so much more than that. They let loved ones know you’ve arrived at a certain place safely. The say, “I am thinking of you even though I am far away”, and they share the sights you are seeing with that someone so they can be with you across the distance. They may recount trip-related woes and how you resolved them, hopefully with a bit of humor.
So my answer to that reader is yes, that is exactly what I want to portray, in the column, in this book, and in all my dialogue with parents and teachers. I am having a good time on this trip. The trip has been fueled by hope, possibility, undreamed-of accomplishment (his, mine and my whole family’s) and “return on investment”. But we did not start out from there.
We started with a basically sweet-tempered but nonverbal child who would lapse into baffling episodes of hair-tearing, cat-scratching, furniture-throwing violence; who wore clothes only when socially necessary and who physically backed away from many classroom and playtime activities with his hands over his ears; who laughed at all the wrong times and didn’t seem to experience pain or cold in a typical way.
Bryce was identified with autism by a public school early intervention team at the age of three. I went through five stages of grief in the time it took to end the initial meeting. My older son had been identified two years earlier with ADHD. I already knew about the therapies, the social challenges, the never-ending vigilance-and the exhaustion.
Raw fear motivated me in the beginning. I could not bear to imagine Bryce’s fate as an adult if I did not do everything within my power to equip him to live in a world where I would not always be around. I could not rid my head of words like “prison” and “homeless”. Not for a nanosecond did it occur to me to leave his future to the professionals or to the ephemeral idea that “he might outgrow it”. His very quality of life was at stake, and failure was simply not an option. This is what got me out of bed every morning and drove me to take the actions I did for him.
Jump a few years ahead with me now to the turn of the century. At the school assembly, adorable first graders step to the microphone one after another to answer the question: What would you like to be in the new millennium? “A soccer star!” is one popular response. “A pop singer!”; “A race car driver!”; “Cartoon artist, veterinarian, firefighter”!
Bryce has considered the question carefully: “I think I’d just like to be a grown-up.”
Applause breaks out and the principal speaks deliberately. “The world would be a better place,” he says, “if more people aspired to what Bryce aspires to.”
Here is the gist of what I know to be true. Your child’s autism does not mean that he, you and your family will not lead full, joyous, meaningful lives. You may be scared, but dare yourself to believe this….with a caveat. How much of that full measure we achieve with our kids is greatly dependent upon the choices we make for and about them given their individuality and uncommon character. A memorable passage form Nora Ephron’s story Heartburn has the protagonist asserting that when your dream breaks into a million pieces, you can either fall a part, or you can go get yourself a new dream.
Some of you will be reading this as newcomers to the world of autism. To you I say: autism itself is not awful. Not understanding it, not having people around you who understand it, not getting the help that is surely out there for your child – that can be very awful. You are at the beginning of your journey, and we won’t deny that it’s a long one, will we? And you would not begin any long journey without first learning a little bit about your route. That’s what this book is for – to point out some basic signposts you will likely pass along the way, so that when you do, they will have a familiar look to them and be less foreign and frightening.
Some of you are already well-acquainted with the challenges of autism; sport a few scars too, I’ll bet. This book can speak for you and your child when so many need to hear your message: teachers, parents, siblings, in-laws, babysitters, coaches, bus drivers, peer parents, friends of siblings, clergy, and neighbors. Pass it around. Watch the dominos fall.
This book will equip those around our children with simple understanding of autism’s most basic elements. That understanding has a tremendous impact on the children’s ability to journey towards productive, independent adulthood. Autism is an extremely complex disorder but throughout my experience, I saw its myriad characteristics fall into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. All are crucial. Here’s why:
Sensory processing challenges: It’s inescapable. A child cannot be expected to absorb cognitive or social learning, or even “behave”, when his environment is a constant bombardment of unpleasant sensations and nasty surprises. Your brain filters thousands of multiple-sensory inputs (what you see, what you hear, what you smell, etc.) simultaneously, but his does not. It can provoke the equivalent of twenty-four-hour “road rage” as all those signals jam hopelessly in the brain stem. Think of how you feel trapped in the stifling fumes and racket of traffic with no ability to affect your situation.
Speech/language delays and impairments: Without adequate means of expression, needs and wants will remain unmet. The inevitable result is anger and frustration, not learning and growing. The ability to communicate, whether through spoken language, pictures, signing/semaphore or assistive technology is a bedrock.
Social interaction skills: Elusive and ephemeral, these skills change from culture to culture, and from setting to setting within a culture. But the lack of them can isolate a child to a devastating degree. The child with autism, who truly doesn’t “get it”, paddles against a brutal current in first comprehending, then executing.
Whole child/self-esteem issues: Every last person on the planet is a package deal. We want to be accepted and appreciated for what we are as a whole, not a bundle of traits and quirks to be cherry-picked at will by others. The child with autism does need skilled guidance to achieve a comfortable place in the larger world, but working toward that goal with positive energy and optimism is not the same as “fixing” the child. They already possess much that can be celebrated; we must now go out and love and guide them with the same acceptance of whole self we want for ourselves.
Bryce’s successes are firmly rooted in that solid sense of self-esteem, his hard-won comfort with his physical environment and his ever-expanding ability to express himself. With those pieces in place, social and cognitive learning followed. As his life became easier, so did mine. Each passing year brought deeply gratifying triumphs: the day he swam to a trophy finish in a city-wide swim meet, the day he sang and danced his way through Charlie and the Chocolate Factory as Grandpa Joe, the day he rode his two-wheeler for the first time, the time we worried no one would come to his birthday party and forty people showed up, his elation at making it through his first Scout campout, and his utter euphoria after successfully working up the nerve to ask the girl he’d admired since kindergarten to dance at the sock hop.
And the truth is, in time I came to realize that I would not change him even if I could. I wouldn’t take his autism away. I wouldn’t have him be anything other than exactly what he was.
Though the four elements we’ve just discussed may be common to any children with autism, keep in mind that it is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly, every parent, teacher and caregiver will be at a different point in their understanding of the spectrum. Child or adult, each will have a unique set of needs. Like the millions of pixels that comprise a television image, each person involved is a complicated composite. That’s why there is no single recipe for success and why guiding, educating and appreciating the child with autism will be a continual work-in-progress. There will be little time off for complacency. The famous opera diva Beverly Sills, mother of two special needs children, once said: “There is no shortcut to anyplace worth going.” True – but there is the joy of discovery in the journey. The guidebook is in your hands. Let’s get started.
HERE ARE TEN THINGS EVERY CHILD WITH AUTISM WISHES YOU KNEW:
# 1:
I AM FIRST AND FOREMOST A CHILD. I HAVE AUTISM. I AM NOT PRIMARILY “AUTISTIC”.
My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you individualized by one trait? Are you heavy (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about.
As an adult, you have some control over how you define yourself. If you want to single out a sing characteristic, you can make that know. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it”, my natural response will be: Why try?
# 2:
MY SENSORY PERCEPTIONS ARE DISORDERED.
This means that the ordinary sights, sounds, smells, tastes and touches of every day that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you, but I am really just trying to defend myself. Here is why a simple trip to the grocery store may be hell for me.
My hearing may be hyper-acute. Dozens of people are talking at once. The loud speaker booms today’s special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!
My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia – I can’t sort it all out. I am dangerously nauseated.
Because I am visually oriented, this may be my first sense to become over-stimulated. The fluorescent light is not only too bright, it buzzes, and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing – the space seems to be constantly changing. There are too many items for me to be able to focus (I may compensate with “tunnel vision”), like glares from windows, moving fans on the ceiling, and so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.
PLEASE REMEMBER TO DISTINGUISH BETWEEN WON’T (I CHOOSE NOT TO) AND CAN’T (I AM NOT ABLE TO).
It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “(*&%^%%^&_)()_(+**(^&^”. Instead, approach me and speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.
I AM A CONCRETE THINKER. THIS MEANS I INTERPRET LANGUAGE VERY LITERALLY.
It’s very confusing for me when you say, “Hold your horses, cowboy!” When what you really mean is, “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is, “This will be easy for you to do.” When you say, “It’s pouring cats and dogs”, I see pets coming out of a pitcher. Please just tell me, “It’s raining very hard”.
Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are usually lost on me.
# 5:
PLEASE BE PATIENT WITH MY LIMITED VOCABULARY.
It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused, but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong.
Or, there’s a flip side to this: I may sound like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, television or the speech of other people. It is called “echolalia”. I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.
# 6:BECAUSE LANGUAGE IS SO DIFFICULT FOR ME, I AM VERY VISUALLY ORIENTED.
Please show me how to do something rather than just telling me. And please be prepared to show me many times. Lots of consistent repetition helps me learn.
A visual schedule is extremely helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities and helps me manage my time and meet your expectations.
I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.
# 7:
PLEASE FOCUS AND BUILD ON WHAT I CAN DO RATHER THAN WHAT I CAN’T DO.
Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing”. Trying anything new when I am almost sure to be met with criticism, however “constructive”, becomes something to be avoided. Look for my strengths and you will find them. There is more than one right way to do most things.
# 8:
HELP ME WITH SOCIAL INTERACTIONS.
It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, I might be delighted to be included.
I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to ask, “Are you okay?”
# 9:
TRY TO IDENTIFY WHAT TRIGGERS MY MELTDOWNS.
Meltdowns, blow-ups, tantrums or whatever you want to call them are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, and activities. A patter may emerge.
Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment.
Parents, keep this in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders and gastrointestinal problems can all have profound effects on behavior.
# 10:
…….PLEASE LOVE ME UNCONDITIONALLY.
Banish thoughts like, “If he would just ----“, and “Why can’t she ----“. You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it!
Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? It’s also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh.
They had autism too.
The answer to Alzheimer’s, the enigma of extraterrestrial life – what future achievements from today’s children with autism, children like me, lie ahead?
All that I might become won’t happen without you as my foundation. Think through some of those societal rules and if they don’t make sense for me, let them go. Be my advocate. Be my friend, and we’ll see just how far I can go.
Tuesday, October 11, 2011
The Impact On Siblings Of Children With Autism
Now that my youngest is 9-years-old he is becoming more acutely aware of his brother's differences. He struggles with his repetitive behaviors. He struggles with the crazy sounds his brother makes. He struggles with Anthony's need to watch him at all times while he plays the Wii so that nothing gets scratched. And on, and on, and on...
While these idiosyncrasies are not something we can change in Anthony, we can help our 9-year-old with coping skills. So this has now become my new pursuit. What do I do? How do I help Gianni deal with these irritants in a healthy way?
I have assured him that while we know these things with Anthony can be very frustrating, we still love Anthony dearly. I have expressed to Gianni that I too get very depressed and angry at times about this autism that is so much a part of his big brother. But how do you help a 9-year-old, who is trying to find his own identity and place in this world, cope with the fact that he has now become the "big brother" in many ways.
I crawled into Gianni's bed with him last night and just held him. I offered some ideas as a starting place. Maybe he could keep a journal. Writing down things that happen during the day. Maybe we could create signs for him to hold up to Anthony when Anthony is repetitive or obsessive. We have also expressed this issue with Gianni's school and they have been very gracious in allowing Gianni to see the school counselor when he needs to vent. We have asked his teacher to be mindful of his moods and emotional state each day. We are looking into dance classes for him as a release. Most importantly though, we are keeping a crazy strong sense of humor in the home.
So, we'll keep searching and moving forward. As always, I welcome any thoughts or suggestions. Keep it positive please. :o)
~Susan
Sunday, December 20, 2009
OBSESSIONS
I don't care that he washes his hands obsessively, dries them off in a ritualistic fashion, brushes pencil eraser shavings off in a pattern of three strokes, constantly rubs his hair and then fears baldness as a result, says the word "excuse me" until it sounds just right, BUT..........
IT'S THE FRIENDSHIP OBSESSIONS that get me crazy!!! In his world, friendships are EVERYTHING! He will do whatever it takes to keep his friends. He has no self-worth. It's all tied up in having a friend. He is constantly checking in with people: "we're still friends right?" He's afraid to tell any of them "no", or they won't want to be friends with him anymore, and for Anthony, that would be the equivalent of death.
My biggest fear with this is that he will especially obsess over a child who clearly and verbally has told Anthony that they don't want to be his friend. He has a new child in his class right now who is very aggressively against Anthony, and has even stated "I like everyone. It's you I hate". This makes Anthony want to come back even harder, and work more tirelessly to get this kid's favor. Why won't Anthony just say "forget you! who needs you!", and walk away? Why won't he heed my many prompts to find another person to play with? Why is it so important to him to change someones negative opinion of him to a positive one?
To top it off, his teacher has asked for my help, but is rejecting every suggestion I have! I wanted his behaviorist to come in last Friday to observe: "NO! It's a Christmas Party and she won't get an accurate view of the problem!" I WAS THERE!! There was so much obsession going on I was close to tears!!!! I asked his afternoon aide to stand closer to Anthony while out on the playground, but because she's just an "access aide" and not a "1:1 aide" this is not possible.
I'm working so hard here not to be a defeatist, throw my hands in the air and say "I GIVE UP!!!!"
Here's my latest plan: Has anyone heard of the "Bill of Assertive Rights"? It's all about helping a person not to be passive or aggressive, but to work on learning and exercising their rights as a human being. It's about understanding what you have the right to and what you don't have the right to. For example: I have the right to my opinions, ideas and beliefs. I have a right to be happy. I have a right to tell you how I feel. I don't have a right to yell and scream at you.....and on and on.
So first, I need to get him to understand that learning to be assertive is about empowering him to protect his rights and establish self respect. I'm going to start by using puppets and dolls to show him the differences between submissive and aggressive behavior, and then begin to introduce the idea of assertive behavior.
I've found an acronym K.I.T.E. This is part of assertive training for children:
K= Know what you want
I=Use "I" messages vs. "You" messages (to prevent the other person from feeling attacked)
T=Tell others what you want firmly and repeatedly (you don't always get what you want the first time)
E=Expect change/Evaluate effectiveness
This is all of course at the very early stages. I don't know if or when there will be any improvement in his emotional/self respect status, but I think it's really worth a try. With Anthony, it will definitely take a lot of repeating role play and replays, and even scripting what he might say when confronted with negative speech.
I'll try to come back on here frequently to keep a log of our efforts.
Wish us luck! :o)
Susan
Monday, October 5, 2009
What do we do with "Middle School"?!
Thursday, September 3, 2009
"The single greatest trend I've seen as a consultant to hundreds of schools over the past ten years," Borba says, "is the marked increase in anxiety and anger in our children. We shouldn't kid ourselves: the steady onslaught of stress and violence images is taking a major toll on our children's emotional and moral well-being."
What can parents do? Teach children the critical virtue of self-control so they know how to handle their emotions appropriately when faced with frustrations. In Building Moral Intelligence, Borba gives parents the following five strategies to teach children self-control so they can calm down and learn to handle their anger.
1. Model coolness when facing problems. Showing you can keep your cool, even in crisis, is an important way to help your children learn self-control. You send a clear message: "It may look like a crisis, but by staying cool, I'll be in a better position to solve the problem." Example is always the best teacher: "I need to take a deep breath and stay cool before I call the bank. I can't understand how my account is so overdrawn."
2. Develop a feeling vocabulary. Many kids display aggression because they simply don’t know how to express their frustrations any other way. They need an emotion vocabulary to express how they feel, and you can help your child develop one by creating a "feeling word" poster together. Here are a few: angry, upset, mad, frustrated, agitated, furious, apprehensive, tense, nervous, anxious, irritated, furious, ticked off, irate, incensed. Write them on a chart, hang it up, and when your child is angry, use the words so that he can apply them to real life: "Looks like you’re really angry. Want to talk about it?" Then keep adding emotion words to the list whenever new ones come up in those great "teachable moments" that come up throughout the day.
3. Identify anger-warning signs. Explain to your child that we all have our own little signs that warn us we’re getting angry, and that we should listen to them because they can help us stay out of trouble. Next, help your child recognize what specific warning signs she may have that tell her she’s starting to get upset. For example, "I talk louder. My cheeks get flushed. I clench my fists. My heart pounds. My mouth gets dry. I breathe faster. "Once she is aware of her signs, start pointing them out to her whenever she first starts to get frustrated: "Looks like you’re starting to get out of control." "Your hands are in a fist now. Do you feel yourself starting to get angry?" The more we help kids recognize those early warning signs when their anger is first triggered -- usually when they first show signs of tension and stress -- the better able they will be to calm themselves down and learn to regulate their own behavior.
4. Use self-talk to stay in control. Experts suggest that another way to help kids stay in control is to teach them to say affirmations-simple, positive messages-to themselves in stressful situations. Here are a few kids that can learn: "Stop and calm down," "Stay in control," "Take a deep breath," and "I can handle this." Suggest a few phrases to your child, then have her choose the one she feels most comfortable saying; help her rehearse it a few times each day. You might post the words she chooses throughout the house as a reminder. The more your child practices the affirmation, the greater the likelihood she will use it during a difficult situation in which she needs to stay cool and in control.
5. Teach abdominal breath control. Learning to breathe the right way -- especially in stressful situations -- is one of the most effective ways to stay in control, and so it’s an important technique to teach kids. Experts advise you to teach the relaxation method with your child sitting in a comfortable position, her back straight and pressed into a chair for support. Then show your child how to inhale slowly to a count of five ("one Mississippi, two Mississippi," and so on), pause for two counts, and then slowly breathe out the same way, again counting to five. Repeating the sequence creates maximum relaxation. The trick is to help your child learn to breathe very slowly and deeply and then practice it over and over in a calm, relaxed setting so that she can remember to use the technique during a stressful time.
Teaching kids to use self-control is just one of the many attributes of Dr. Borba's new book. The book covers this and literally hundreds of other ideas, stories, techniques, tips, and parenting strategies to help parents build moral strength in their children. Borba's practical, step-by-step advice will guide parents along their most important role: raising good, moral human beings.
Tuesday, September 1, 2009
So to preface this post, I need to explain that I'm reading a book titled "Excuse me your life is waiting" by Lynn Grabhorn. It teaches that we are all "magnets" either bringing negative or positive things into our lives by the feelings and energy that we're putting out. If you walk around in your daily activities with a very negative attitude and approach to things the thought is that you'll receive nothing but negative experiences. "The electromagnetic vibrations I send out bring everything into my life. Good or bad. No exceptions." So in essence, like attracts like.
So great! So I like this idea and the first day I try it I'm really getting some positive things to come into my life through my business and with my relationships. Great! It works, and I'm only in chapter one! This is for me!
Then it happens......as it always does. My 11-year-old son with autism announces today, as we are leaving for school, that he'd like money to go to the book fair. Sure! I want to promote reading rather than the Wii or DS, so I give him $10.00 to buy a book. He's already packed about 10 books in his backpack loading it down to the point where I wouldn't want to carry it around, but he's fine with it.
On our drive to school he is happily discussing one of them from the back seat. It's going to be another great day I think. We're off to a good start.
We walk up to the gate and are greeted by the usual joyful exuberance of Ms. Gray. She's so wonderful to my son. She seems to have a genuine interest in him and his well-being. She throws her arms around him in her usual upbeat manner.
Anthony proceeds to tell Ms. Gray that he's going to buy a book at the book fair today. And that's when it all turns to poop! My stomach! It wrenches and tightens up inside of me! I know that my sweet little boy is about to explode not caring who sees! Poor Ms. Gray stands in a helpless state as her happy Anthony becomes a raging ball of fire!
We tell Anthony that we'll go to Barnes & Noble, something I had already told him the day before, but he doesn't hear us! He throws his backpack down shouting "I'm outta here!". My mind goes through so many different emotions and fears all at once, as I try to run after him to bring him back. "Oh my God, Susan! Everyone is watching! Once again you and Anthony have become the entertainment for the group. I want to run away and hide, but I can't! I need to hold it together! I need to be the "eye in the middle of the storm". This is not a little 3-year-old whose tantrums are expected as the norm. This is an 11-year-old boy who comes up to the shoulder of my 5'6" frame! They see right through me! They know that I'm a terrible mother. That I don't have a handle on my son! I can hear the screaming internal judgments coming from my little audience! "Why can't she control her kid! My God! He's acting like a baby! Where's the discipline in that family?".
I can't listen to that now. I've got to get ahold of Anthony and bring him back to the gate; back to his backpack he threw to the ground. I quickly tell him "Anthony, we will not be doing this today" (brilliant right?). "You will go back and pick up your backpack and get to your classroom, and we'll go to Barnes & Noble to find a book later".
I watch him slowly walk through the gate and up the walk. All the while realizing that it's my fault. I set him up for this meltdown by not making sure the book fair was still happening. If I'd check before we left the house this morning I could have avoided our "little show".
Then there's the pain and intense disappointment I know my son is feeling, and I collapse into myself as I walk back to the car.
So much for being a positive "magnet" today!
I call the school to warn them of his turmoil, and they assure me that they know all about it! He's already tantruming again in the classroom and needs to be removed to calm him down. They don't seem happy at all. "Perfect" I think to myself. "Now I've got them angry with me as well".
It's now 12:30 pm as I finish my thoughts here, and you know what I think?
Who gives a damn! Who cares what the rest of the world thinks? This is my SON and this is how he expresses himself. He does not worry about the outward appearances that we all get so caught up in. I can guarantee you he's not sitting at his desk right now thinking "boy I wonder what people are thinking of me. I'm so embarrassed." Nope! I'll tell you what he's thinking: He's thinking about Barnes & Noble! His main objective is to GET THAT BOOK!! His heart and mind are so pure. He doesn't put on any pretenses. He doesn't wear one face in public and then another, much different one at home. He is who he is. He is "perfectly Anthony". There is no guess work with him. You will always know right where you stand with him. No guess work involved.
He spends so much of his time trying to peer deeply into peoples eyes (literally getting close to their eyes to find the true mood of them). Why does he do this? Because the "normal" world wears so many different masks. We have masks for work. Masks for home. Masks for friends. Masks for acquaintances.
Anthony wears no mask. His honesty is brilliant and his heart is true. His expressions are strong and very clear to navigate.
Today he has been MY teacher. I will take off my many masks. I will walk exposed for the world to see me in all my fears and feelings of inadequacies. Today I will know my friends who are true. My friends who will not run and hide. Today I am purely me. Today my son will have no guess work around my feelings, and he will feel safe.
~Susan