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Five Benefits of Growing Up With an Autistic Sibling

December 15, 2011 4 comments

Dana Fialco collaborated with her sister Tara, who has autism, and their parents to create the “Starabella” three-book audio series. Visit her online at www.starabella.com.

Every sibling relationship is unique, but having an autistic child in a family can impact the entire family dynamic. While much attention is paid to the challenges and difficulties faced by parents and siblings of autistic children, growing up with an autistic sibling also offers many advantages and hidden treasures that can help shape an individual’s life and character. Here are five benefits of growing up with an autistic sibling:

1. Perception. Having an autistic sibling means growing up alongside someone who sees the world in a unique, individual way – a way that is often different from the mainstream population. It also means living day-to-day with someone who behaves somewhat-to-very differently than the general population. The sibling without autism learns very early on that the world we live in is not black and white; there is not necessarily a right and wrong way to do all things. With solid parental guidance, siblings come to learn that individuality is not scary or wrong, but valued and beneficial to society. The neuro-typical siblings go into adult life with open minds and the ability to see the world from many views. Not only does this shape an individual with compassion, empathy, and acceptance of differences, but it also inspires innovation and creativity. The siblings can become real thinkers who see beyond face value, as well as diplomats who can navigate and reconcile conflicting points of view.

2. Perspective. Growing up with an autistic sibling means watching your sibling face each day with more courage and strength than most of us can fathom. Whether facing ridicule and cruelty from others or simply trying to get by in a world that was not built to accommodate their needs and way of thinking, kids with autism experience constant challenges. It’s difficult to witness this on a daily basis and not grow up with great perspective about what actually constitutes a problem. Granted, a pitfall of some siblings is to decide that their own real problems or feelings do not warrant attention or concern. However, with maturity and proper guidance from caring adults, the siblings can grow into adults who can balance experiencing their feelings with not overreacting to trivialities or falling prey to self-pity. This perspective allows them to remain calm during difficult situations, and to be thoughtful rather than reactionary.

3. Leadership. Siblings of autistic children often have to mature very early – arguably, earlier than should be required. By necessity, siblings often must assist their parents in helping, providing care, and teaching. These households can be chaotic, and siblings must develop a real inner strength to deal with the chaos, emotions, and frequent uncertainty. In families, siblings often collaborate – working on projects, carrying out chores, or playing together. Siblings often see each other’s capabilities and way of thinking from a different perspective than their parents or teachers. Whether older or younger, the non-autistic siblings naturally gravitate to leadership roles in the sibling relationship. They learn to stand up for their sibling to others, and advocate for their sibling’s potential to be seen and met with proper challenges for growth and success. Whereas this can present difficulty for some, in the end, it shapes strong adults with tremendous potential for leadership. They can grow into leaders who are comfortable navigating uncertainty and still delivering results; they become comfortable leading and motivating others, and they learn to see and foster the potential in those they lead. They see differences in working styles and ways of thinking as welcome attributes rather than frightening, difficult to manage, or unacceptable. The siblings become strong, compassionate leaders who are natural innovators, protectors, and advocates.

4. Courage. By necessity, growing up with an autistic sibling teaches a child to have the courage to stand out. Venturing into society with someone who does not necessarily conform or can have unfiltered reactions means there will be moments when the entire family stands out, whether they like it or not. For children and teenagers this can sometimes cause embarrassment. However, it is an important part of their development that will yield rewards their entire lives. It helps the siblings learn to be themselves and express their ideas, and not be swayed by the crowd. It helps them see public perception for what it is, and to know when to take or leave an outside judgment or opinion. A lifetime of developing strength and compassion provides the courage and pride to face the world head-on.

5. Creativity. Many of the other listed benefits have underlying tones of creativity, or produce creativity as a byproduct of the other attributes achieved. Siblings often have a unique way of communicating – sometimes even developing a shorthand or symbiotic relationship. Learning to communicate effectively with an autistic sibling takes a great deal of creativity. Autism manifests differently in each person, and there is a broad spectrum. However, communication and social awareness are almost always affected in some way. Siblings grow up learning how to organically communicate, reach, and connect with their sibling. Because those with autism often have unique and varied ways of thinking and seeing the world, their neuro-typical siblings often benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to benefit from a very creative point of view. Simply being so intimately engaged with a person lacking the tools to temper individuality through conformity stretches the mind and creativity of a sibling. Many people with autism also have some extraordinary abilities. Not all are creative, but some do have creative talent, be it visual arts, music, writing, or simply expressing a worldview that is unique and insightful. An added benefit to creativity is when a sibling grows up in a house filled with this art. Even a non-creative interest exposes the siblings to aspects of the world that they would not normally delve into, and can feed creativity. If the siblings happens to share a creative interest, both or all the siblings’ creativity and awareness grows together. Some siblings even apply their creativity to solving scientific and sociological puzzles, including the puzzle of autism.

Of course, all family dynamics and ways of growing up present their own challenges as well as benefits. Siblings of autistic children naturally develop the tools to see the challenges thrown their way in life for the gifts they can be. They develop the strength and creativity to use those gifts towards compassionate, collaborative, individualized success.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Despite the System

December 6, 2011 10 comments

This is a blog post by Barbara MacArthur. She was diagnosed on the autism spectrum in her mid seventies and her son Howard also has autism.

My husband and I split up before our son was born.  He left the city and I had no idea of his whereabouts.  He had given up his job and later I found he had left behind a lot of debts which were nothing to do with me, but being a muggins I managed to repay them as I continued to work until a couple of weeks before the birth. I did not tell anyone that I was pregnant as I was lucky it did not show and I was afraid of losing my job.  (I had to leave a couple of weeks before the birth, as there were no special arrangements in those days).

We heard no more from Derek until one day, having taken Howard out in his pram; he pulled up in his car. I thought he wanted to look at the baby, but instead he asked me to the movies. It was the last thing I wanted to do. I said no, and he went, and that was the last I saw of him. At the time these events felt tragic, but now Howard, who is 57 and still living with me, and I smile at this. I thought Derek was strong and dominant. I thought I was weak and feminine. I see now that I did not know who I was then, and that I was the strong one.

When he was a child, Howard, was diagnosed as profoundly autistic and asthmatic.  “Just one of those things,” the doctors said. One told me he was “a write-off.” Another advised, “Stop sacrificing yourself, put him in an institution and forget him,” but having Howard adopted was an option I never considered. It seemed such a ridiculous suggestion, and I was sure I could work to support us.

I always had to work, there was no choice.  My husband never supported us and I did not know where he was. Howard was a bonny baby and weighed 28 lbs when he was 6 months old. Social security money would have been insufficient to keep him.  He always had a large appetite and his extra-large size clothes were expensive.  In 1973 my son received an official letter to say my ex-husband had died inManchester.  He had never remarried so my son was his only relative, but nothing was left except just enough to pay the burial expenses.  It was very sad because he was well educated and handsome, and had served as an officer in the Royal Artillery during the war.  Unfortunately, no widowed mother’s allowance, because I had divorced him in his absence (by newspaper advertisement) to make sure I could keep my job – married women were always the first to be made redundant.

In those days there was no allowance for one child or for a handicapped child or lone parent. I had to smile when I was refused a mortgage because my husband’s signature was needed in those days, even though he had left his job, I still had no idea where he was and I was in full-time employment.  I managed to get enough cash to buy a very old house with a dodgy roof, no bathroom and an outside toilet. It was cheap because of its condition, but it was all I could afford, and it took me ages to clean it up, get rid of the cockroaches, beetles and mice.  Somehow I managed to carry out some essential repairs myself until, over the years I saved enough to pay professionals for proper improvements and repairs.

Once, when my son was very small, I did give in to pride when I was on my uppers and applied for help from a charitable organization which had been set up to give financial and other support to unmarried mothers.  They had extended their remit and had given regular financial help to widows, widowers and single dads.  I felt so embarrassed when they turned me down flat in such an unpleasant way telling me in no uncertain terms that my it was my husband’s duty to support my child and me – as if I did not know that already!   Unfortunately, the phrase “Tell me about it!” had not yet been coined. Life is so funny – thank goodness I could see the funny side of it.

The stigma of being a divorcee with a child with learning difficulties was very strong, and we were regarded as less than second-class citizens.  Because of his hyperactivity, screams and tantrums, people thought he was a naughty child with a bad mother. In supermarkets he would go behind the counters and switch any switches on or off, or pull trays of goods to the floor. Could you blame the staff for threatening to ban us? When I took him to the beach he had to be watched all the time.  He had a habit of plonking himself on girls’ tummies when they were sunbathing. And if the bus home ever deviated from the usual route he would try to jump off while the conductor and passengers would remark: “Why don’t you control that effing boy! Women like you shouldn’t be allowed to have children. You should be sterilized.” Even doctors did not seem to understand autism and no facilities or support was available. I came to believe that what people said must be true; sometimes I used to feel that people were stepping all over me with heavy boots, and that I was beaten down into the pavement.

I am proud of my son for what he has achieved.  He will always be autistic and be considered by many as being ‘eccentric’ or a ‘bit odd’, but he is popular and has a tremendous sense of humour.  He is great company, enjoys his hobbies and is kind and affectionate. He is an extremely happy person.

A few years ago my son, Howard, and I signed on for part-time computer courses because we were both computer illiterate.  A Disability Officer at the Jobcentre referred him to the classes and I joined too, partly because I felt my son needed a ‘helper’ to cope with his learning difficulties.   I need not have worried.  We both became hooked on computers and ended up by both signing on for a full-time course at a local College in 1998.  My son became so proficient that the tutors nicknamed him ‘cyber-junkie’ and the name has stuck.  We both lost education in our youth – me at the age of just 14 because my school was destroyed by explosive incendiaries during World War Two – my son because he was refused admission to any school until he was 10 years old because he could not speak until then.  As the local Education Department put it in their letter to me “the medical officer and the educational psychologist have decided that Howard has such a disability of mind as to make him incapable of receiving education”

We completed the second year of full-time studies at college.    An assignment Howard chose to complete was about shopping on the Internet (5,000-plus words plus illustrations) and he named it ‘Window(s) Shopping’.  Despite his slight speech impediment he gave a great 20-minute presentation of the subject in front of class and tutors. It was very enjoyable for everyone.  I chose to compose an assignment about elderly people surfing the Internet and I called it ‘Cyber-Wrinklies’.

I used to be a full-time carer for three people – my elderly parents and my son.  My parents gave up their Council flat in Llanrumney and lived with my son and me for 16 years when we cared for them.  In July 1982 I was lucky enough to be able to take early retirement, as it really had become a 24-hour a day job at home. Some years ago my parents died within a month of each other – both in their 90s, in our home, leaving just enough money to cover cremation expenses. They had dreaded the thought of going to a nursing-home, they went suddenly and without pain, first my father with a heart attack and then my mother with a massive stroke.

My son and I were both thrilled to gain our Computer Science qualifications and continued our studies.  Howard graduated from University in 2003 – Computer Science. We are both very happy and have made lots of friends through our IT interests. Our life was transformed. We owe a lot to the tutors and staff at college and University and those who have set up these educational schemes.

Howard and I complement each other in that we have similar interests — computers and bookshops, for instance — yet we go in different directions. Howard loves downloading train simulators from different countries of the world on to his virtual railways. He has become hooked on music from YouTube. Howard loves Enya. I like downloading photos of tropical blue seas, palm trees and beaches. I like looking at different websites and what is going on in the world, especiallyUSpolitics. Howard is wary of the telephone, young children, noise, dogs, yet we both love heavy metal (noise) like ‘Queensof the Stone Age’, ‘Rammstein’ and Dave Grohl. Howard used to tease me because I loved all Leonard Cohen CDs, but later he became hooked too.

We are both loners – I suppose that is the autism in us.  It was not until my father was quite old that it dawned on me that he always had the classic symptoms of autism.  He had no formal education and joined the Royal Navy at the outbreak of the Great War (WW1) when he was just 16; he was well read and considered very clever, but extremely eccentric. When I thought back to my childhood I realized that I was ‘different’ but I was not diagnosed as somewhere within the autistic syndrome until I was in my mid-70s.

Now I am 85 and still Howard’s only carer, though he needs guidance more than care these days. I tell people that as I get older and less strong physically, we “prop each other up”, but that is partly to raise Howard’s self-esteem. He likes to consider himself my “nurturer”, a word he found on the web. I joke sometimes about pensioners who say they are lonely; I wish I had the chance to be lonely. I enjoy time on my own, always go to bed late and sometimes get up in the early hours and, if I am lucky, watch a late-night film drama. Tonight as I write he is in bed and I have just put out the rubbish bags. He helped earlier by emptying waste-paper baskets around the house, so it is team work. But he is often in his own world in his mind.

We lead a happy life. Coming back from town this morning we were dodging the traffic and continually laughing for no particular reason. But I worry what will happen to Howard when I die. My ex-husband died of cancer inManchester (this we learned by letter in 1973). We have our own home and Howard would want to remain here. There must be many carers in similar circumstances throughout the world who lay awake at night wondering what will happen when they are gone. Howard loves his home and is happy here; it would break his heart to be moved.

We were very lucky as we survived DESPITE the system – not because of it.  I hope eventually all of you will be lucky too.

Diagnosing Psychiatrists: Making Doctors Work for You

November 28, 2011 11 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

Since my early adolescent years I have been a reluctant guinea pig for the psychiatric industry. I have been repeatedly misdiagnosed, overmedicated, poked and prodded. I’ve had Bipolar Disorder, Generalized Anxiety Disorder, Major Depressive Disorder, etc… I’ve been on every sedative, stimulant, anti-psychotic and anti-depressant on the market. I’ve endured unbearable side-effects and withdrawal symptoms. I’ve taken drugs to treat the side-effects of drugs that I was taking to treat the side-effects of other drugs! More than once, I’ve wanted to beat a shrink to a bloody pulp, but was too comatose to do so. After a few years of seeing these quacks, I went from an admittedly eccentric kid to the drooling, incoherent lovechild of Charlie Sheen and Anna Nicole Smith.

How exactly did this happen? How did one doctor after another diagnose me with such a wide variety of mental illnesses? Several decades ago a diagnosis of Bipolar Disorder, then called Manic-Depression, typically resulted in commitment to an institution. Now Bipolar Disorder is often nothing more than a trendy label, worn with pride by actors, artists and the like… ” I’m into sculpture and Kabbalah, I smoke American Spirits and I’m Bipolar.” Give me a break!

I was once seeing a psychiatrist who eyed me suspiciously for signs of mania during my every visit. I finally asked him, “How many times do you have to see me before you realize I’m always like this?”

“Well,” he said, “Maybe you’re the kind of bipolar patient who is always manic and never depressed.”

“Are you saying I’m unipolar? Is that actually a diagnosis? Maybe I’m just hyper…”

As many of you know, I’m autistic. This diagnosis is unquestionably valid and has radically altered the course of my life and the way I view myself. How did I go through a decade of constant psychiatric treatment without anyone catching on? Well, for starters, there are a limited few pharmaceuticals approved for the treatment of autism.. There are literally dozens of medications used to treat the symptoms of Bipolar Disorder. You do the math…

This rampant tendency towards over diagnosis belittles the struggles of people who actually have these disorders, and instead of treating symptoms, often creates them in individuals given extremely powerful and dangerous drugs without due cause. I never had an anxiety disorder until I became dependent on anti-anxiety meds called benzodiazepines, which were originally prescribed to me to treat the agonizing side-effects of an anti-psychotic. I guarantee that anyone prescribed escalating doses of sedatives will develop some major issues. But the more issues you have, the more issues you will seek treatment for. The psychiatric industry doesn’t stand to make much money from a patient without psychological complaints.

An equal but opposite problem is caused when perfectly valid treatments are withheld from patients for irrational reasons.  Most doctors receive the majority of their pharmaceutical knowledge from representatives of the pharmaceutical companies. Also, many doctors receive kickbacks from big pharma for prescribing their meds. Because of this, tried and true treatment options are passed over in favor of “the next big thing.” However, these new pharmaceuticals have not yet been proven to be any more effective than their more affordable predecessors, if, indeed, they are any different at all.  The pharmaceutical industry is a lot like Hollywood; the latest blockbuster is usually just a sequel or remake. Drugs that have worked for decades are often tweaked, reformulated, renamed and presented to the public as something revolutionary (this is the case with a myriad of extended release medications, whose instant release counterparts are often just as effective for a fraction of the cost).

When seeing a shrink, it is important to check out the office swag; if the clock on the wall, the paperweight on the desk, and the pen in the doctor’s hand are all labeled with the name of a certain drug, chances are you will find that name on you prescription. Sadly enough, that doctor probably found the same name on their ticket for an Alaskan cruise.

If you find any of this alarming, you probably haven’t been lobotomized by the psychiatric industry or are currently too overmedicated and uniformed to know the difference. If you are seeing a psychiatrist or plan to do so, please, save yourself money and heartache; do your research! No one should go through the hellish and unnecessary experience that I did. Are you sure your diagnosis is correct? Are you taking the most effective, affordable, and time-tested medications?

Ask plenty of questions. Make suggestions. No patient should ever be afraid of their doctor. Remember, your doctor works for you!

I am by no means an opponent of pharmaceutical intervention, and have received enormous benefit from the right medications.  Unfortunately, the road to psychotropic success was unnecessarily long and painful.

It seems the psychiatric industry suffers from some nasty symptoms, including reckless disregard for the safety of others, lying, lack of remorse, and consistent irresponsibility.  According to the DSM-IV, these symptoms indicate a diagnosis of Antisocial Personality Disorder.  Now, I’m not a doctor (I just play one in real life) so I can only suggest that the psychiatric industry be given a diagnosis of APD and prescribed…  a dose of their own medicine.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Understanding… The bigger picture

November 26, 2011 10 comments

This post is by Stuart Duncan, a work from home father and whose wife is a stay at home mother with Fibromyalgia, which adds a whole other layer of difficulty. They devote as much time to their children as possible because they feel that their children need love, guidance and support far more than they need a new shiny bike. They can’t provide all that they wish that they could but their family is what it is, they push forward as best they can. You can read the original post here.

For the last couple of years, I’ve really been pushing the idea of taking awareness of Autism and upgrading it to understanding and acceptance. I truly believe that, while awareness is a great start, it’s simply not enough in that, being aware of something doesn’t necessarily mean you understand it. And what most autistics need is some level of understanding and, of course, acceptance of who they are.

Understanding of…

The thing is, you don’t have to necessarily understand every nuance about Autism… it would be nice. If everyone just instantly knew all about Autism, acceptance would be a breeze. But you don’t have to.

What you do have to understand is that there is a reason.

When you see someone acting strangely on the street corner, when you see someone being mean and rude in general, when you see someone hitting themself, when you see a person being… not what you expect… there is a reason.

Perhaps the person has a disability/special need, perhaps the person had a really bad day (fired, family member died, lost everything), perhaps the person simply is the way they are… it is not personal. It’s nothing against you.

All you need to do is understand that there is a reason. Rather than say “that person is weird” or to think about how what they’re doing affects you… instead, ask yourself what the reason could be. Perhaps it’s bigger than you think. Perhaps it’s not. But there is a reason.

It’s not always Autism… so it’s not just for autistics that I push for understanding.

But I do know this. If people stop judging and take a moment for greater understanding when they see an autistic acting “against the norm”… then perhaps those people will take a moment for greater understanding in all circumstances.

Don’t let someone lashing out at you affect your day. They had a reason and it wasn’t you. Don’t let someone acting strangely affect how you see people. They have a reason… they’re not strange.

Greater understanding… it starts when you stop taking it personally and judging the person for it.

Acceptance

With understanding comes acceptance… once you come to understand how a person is, how they think and who they are… you accept them.  You may wish to avoid the person who lashes out at strangers when they have a bad day, but you accept them for that.

Same with people with special needs, or even just regular every day people who go about their life differently than you do.

They have a reason for being who they are just as much as you have a reason for being who you are. And if you understand that, you can accept that.

I want for people to accept me for who I am just as much as I want for people to accept my children for who they are. Not because one has Autism and not because one does not. But because they are who they are.

Just One

If you can gain understanding and acceptance for just one new person, someone you see as different than yourself, someone you do not yet know… then you can do it for anyone and everyone.

It doesn’t matter if it’s Autism, Tourettes, Down Syndrome, political differences, religious differences… anything! If you can gain greater understanding and acceptance of anyone… you have the tools necessary to do that for everyone.

Be quick to to understand…. not judge.

Be Aware – For Parents

November 24, 2011 7 comments

This post is by Tim, a freelance writer and designer who works for Myself, a business that has been thumbing its nose at The Man for six years now. He’s both a stay-at-home (sounds better than ‘kept man’) and a work-at-home-and-anywhere-else-I-can-get-away-with-it dad. You can read the original post here.

[This is Part III of today's three-part series, along with Be Aware - For Family and Friends and Be Aware - For Everyone, for World Autism Awareness Day.]

Be aware that you are not alone. Be aware that there are entire communities of us – locally, online, everywhere – joining together for solidarity, support, and advocacy.

Be aware that we’ve got each other’s backs.

Be aware that not only is grief a normal part of this, it is required. Give yourself permission to go through it.

Be aware that your child is the same precious soul as the newborn baby you once held.

Be aware that some days you’ll feel like you can’t do it, but you will.

Be aware that we’re now free from being average, and are instead free to kick butt.

Be aware that autism allows amazing gifts to be expressed that otherwise would not be.

Be aware that your child will achieve something after trying so hard for so long, and you’ll feel like you all won the World Series. Be aware that this will happen regularly, and often when you least expect it.

Be aware that some days you will float on air and feel like anything is possible.

Be aware that often it is also a desperate marathon. It can feel like 26.2 miles over and over again, and you’re wearing six layers of drenched corduroy, while carrying a dump truck on your back.

Be aware that you only have to go one step at a time.

Be aware that being angry or afraid or frustrated or burned out or desperate is completely normal. If you feel completely crazy, be aware that someone else is too; it’s only when you either feel sane or feel nothing that you might want to worry.

Be aware of words like hope, advocacy, determination, community, faith, love, and perseverance, and don’t forget them.

Be aware that one thing unites us and transcends everything we disagree on – the children we love.

Be aware that there are people preying on our fears and becoming rich off of that. Be aware that there’s a special place for them, and it’s not a particularly nice one.

Be aware that autism is never the same from day to day or person to person.

Be aware that our children grow into adults and that we must fight for the rights of all.

Be aware that autism will lead you to some of the kindest, most skilled, and compassionate people in the world.

Be aware that by accepting the challenges you will experience an even greater joy when they are overcome.

Be aware that life can feel like a constant fight against somebody or something; be aware for whom you are fighting and draw strength from that.

Be aware that everyone we meet is fighting a great battle in their lives, regardless of who they or their children are. Be gracious, and model that for your kids.

Be aware that the sun does come up every morning.

Be aware that you are stronger than you think you are.

Be aware that some days all you can do is just roll up your sleeves, hike up your big boy or girl pants, and dive in.

Be aware that love is always the best therapy.

Be aware that you should never say never.

And be aware that I wouldn’t trade my life for anything.

I Wish

November 23, 2011 11 comments

This post is by Luau, who writes at Run Luau Run. He is the father of two beautiful daughters, Katie and Brooke. Brooke has autism. You can read the original post of, ‘I Wish,’ here.

After my run this morning, like any obsessed runner I went over to the computer, before showering, to upload my run data.  As my stats wirelessly uploaded from my new toy (the Garmin 610), I manually entered my run into dailymile and then meandered over to Facebook to see what my far-flung friends were up to.  I can across some pictures of a dear friend who had recently taken a trip with her family to North Carolina.  Though we have not seen each other in what has to be over a decade, I have always felt a certain closeness to her and her husband.  Simply put, they are good people.

As I scanned through her album, I got lost in the joy and apparent ease their children and her husband’s brother’s children had with each other.  It seemed so…easy.  I have to admit that there is a part of me that is jealous of what they have.

Don’t get me wrong, I wouldn’t trade Brooke for anything, and quite honestly, if someone walked up to me right now and offered me a pill that would “cure” her autism, I’m not sure what it is I would do.  That being said, I wish it was easier for her.  I wish that social interaction and connection were not something that she just doesn’t quite get.  I wish that Katie didn’t have to feel embarrassed when Brooke made awkward social bids.  I wish that I didn’t have the mindset that I have to anticipate some of those awkward bids and feel the need to cut them off at the pass.  I wish, I wish, I wish…

Everybody has issues.  Everybody has problems.  I listen to the local moms complain about this and that.  Some of them feel silly to me, but the truth is, their problems are real to them.  Everybody has issues.  Everybody has problems.

Ours are just different.

I just sometimes wish they weren’t.

Sound of a Sunset

November 22, 2011 8 comments

Big Daddy brings his unique view of fatherhood, and the world at large, to life on this frequently updated and hilarious blog. His tales and cartoons from the lighter side of raising a child with autism always spark laughter and plenty of comments. By telling funny and off-beat stories from his life, Big Daddy shows that raising a kid with special needs is not all doom and gloom. To the contrary, it can be quite humorous and inspirational. You can read the original posting, ‘Sound of a Sunset,’ here.

Griffin makes a lot of noise.  No. I mean A LOT of noise.  If he is not sleeping there are always loud sounds emanating from him.  We have the maniacal laugh and other verbal stims.  There is the sound of him slapping his torso for hours on end.  Most of all there are the questions.  If he weren’t so cute I would swear the relentless questioning is some sort of KGB plot to drive me insane.

Sometimes, I want to tattoo, “Yes.  I like elevators and Wilford is awesome,” on my forehead to at least cut out 15% of the questions I get every hour.  “No.  We are not moving,”  and “To the bathroom.  I am going to the bathroom,” would eliminate about another 9%.

Considering the relentless noise, when Griffin is quiet we get nervous.  It sneaks up on you.  Like the other evening when Mrs. Big Daddy and Lil Sis were out and the boys were left at home.  I was doing a crossword and heard Griffin go to the kitchen with the stated purpose of getting a drink of water.  I heard him fill his cup and then …. nothing.  For about 45 seconds I heard nothing.  He had not left the kitchen.  He wasn’t giggling.  I got no questions.  Silence.

I went to the kitchen to investigate and there stood Griffin, staring out the window at a magnificent sunset.  He turned to me, as lucid and “in our world” as I’ve ever seen him and said,

“Daddy.  That’s a beautiful sunset.”

It was, without a doubt, the most beautiful sunset I had ever seen.  Before I could answer him, Griffin was off to his room to start giggling and, I’m sure, to think of new ways to ask me the same questions I’ve already answered thousands of times.  In the meantime, I stood in the kitchen, crying, for what seemed to be an hour.

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