Little Red Envelope

The Puzzle

Friday, December 16th, 2011 | About Autism | 1 Comment

I have always loved a good puzzle.  There’s something about the slow, methodic process of putting a picture together out of chaos that appeals to me.  The symbol for autism is a multi-coloured puzzle piece, and it seems incredibly appropriate.

When I first heard the word autism in reference to my son, I shrugged it off.  I knew almost nothing about autism, but surely that couldn’t be what was going on with my Tyus.  Now, more than four years later, I have found the piece that I was missing back then – I know what autism is.  Unfortunately, a much more important piece is still out there waiting to be found.

Tyus has had a rough couple of months.  I keep waiting for that “aha” moment that has always come in the past, but so far the solutions are elusive.  We have often gone through phases with our boy where we were trying to conquer some problem or ease some tension, and those answers have slowly emerged.  This time, we have tried everything we can think of and we have learned almost nothing.  Some nights he sleeps, others he lies awake for hours.  Some days the report from school is positive (“We were so proud of Tyus today.  We went to the high school and he sat with his friends through a play that was almost two hours long!”) and the next it is poor (“Tyus didn’t do much work in the afternoon.  He was just done.  We spent a lot of time in the soft play area”).  Some evenings he easily copes with stress and others he is set off by small disturbances.  He has had as many as three good days in a row, but then the bad days come back.  We look for patterns, but none present themselves.

I keep waiting for that loss of hope that I’ve felt in the past, but for some reason it hasn’t come yet.  It surprises me that I’m not crying more.  I am frustrated, that is certain.  But hopeless?  Not yet.  It is starting to feel as though everyone else is entering the acceptance phase of this new, unimproved Tyus and I’m still in denial.  I don’t believe that this boy I’m living with right now is my son.  He is a sadder, much more troubled version of my sweet little ray of sunshine.  My son is in there and I am just waiting for him to return.  I will find that puzzle piece.  I really think I will.  I grow weary of our little experiments: maybe if we cut back his sugar…what if we give him more iron…he has an ear infection, so once that clears up…but I’m not willing to give up yet and accept that he will be in and out of anguish for years to come.

He’s only seven and three months ago he was a happy little ball of energy.  He is still made up of the same stuff that he was then, so there must be some way to find him again. I am willing it to happen with every day that passes.  I am searching through a pile of sky-blue puzzle pieces and they all look the same.  They all hold a faint bit of hope.  Each time you think, maybe this one will fit, and you turn it three times before you toss it aside.  It is exhausting, but for some reason you keep looking.  One of these has to fit, right?

It is out there, our puzzle piece.  I am certain of it.  When I look into the eyes of that little boy, I am determined to find it.  I remember that feeling so well – that moment when every curve sits perfectly in place and you breathe a heavy sigh.  The burden of finding that piece is lifted and you wonder why it took so long to find.  And then, you begin another search.  I know that with autism we’ll always be looking for solutions.  But, maybe that’s why I was chosen to be Tyus’ mother.  I am patient and determined.  And I do love a good puzzle.

Why Autism Doesn’t Suck

Friday, April 8th, 2011 | About Autism, Things My Son Has Taught Me | 3 Comments

Different means nobody’s ever the same.  All bodies are different and so are all brains.  Different is what makes the world so great.  Different is never something to hate.

-Jamie Lee Curtis (Big Words for Little People, HarperCollins 2008)

I recently watched a video about autism that infuriated me.  It was a collection of mothers talking about their autistic children and the struggles of raising them.  I considered posting a link to it here, but it was so negative that I think your life will be better if you never see it.  Not one positive thing was said about autism.  I am here to tell you about the beautiful side of my son’s disorder.

Autism is not without hardships.  At no point will I ever lie to you and say it’s easy.  Why do we want to believe that easy is better?  Sometimes the most difficult things, the things we fight for the hardest, are the most rewarding.

My son is teaching everyone around him how to be more tolerant.  There are a group of grade one kids that light up every day because he enters their classroom.  His siblings are growing up knowing that different can be a very good thing.  I have learned to look at people with disabilities and their families in a new light.

My typical children can do things that Tyus can’t, but he also has skills that they lack.  He has an amazing set of physical abilities and he is extremely empathetic.  He is enthusiastic about school and the people he loves.  And I would be very happy if either of my other kids ever listened as well as Tyus does, or were half as compliant.

Tyus never does anything wrong just because he wants to be bad.  He has not one spiteful, rude bone in his body and the only attitude he gives me is positive.  He never lies or tattles and he’s never in a bad mood.

Because of autism, I am so appreciative of the gains Tyus makes.  I compare him only to his former self and I celebrate the things that he can do because they are just as worthy as the things other children learn.  I’m a better mom to my other kids because of what autism has taught me.  I use wonderful teaching strategies that I’m only privy to because of the professionals that have taught me about how Tyus’ brain works.

Autism is not a curse.  It has made me a better person and a better mother.  It has had a positive impact on my family that is beyond value.  It has brought my husband and I closer together.  It is teaching everyone that Tyus encounters that differences are not always negative.  I owe a great deal of gratitude to autism and it upsets me that so much negativity is associated with it.

I hope that Tyus grows up knowing that autism isn’t a bad thing.  I hope that you believe it, too.  Autism is a part of who he is and it makes him different, but not worse.

Signs

Monday, February 1st, 2010 | About Autism, Things My Son Has Taught Me | 6 Comments

The autism community is keen on early diagnosis.  Research is showing that early intervention makes a huge difference to our kids, and professionals are trying to find ways to help paediatricians and families detect the first signs sooner.  According to renowned researcher Lonnie Zwaigenbaum, whom I recently heard speak, diagnosis is, on average, still happening between the ages of 2 and 3 years, but many children show clear signs by 12 to 18 months.  In my opinion, the one thing that slows down diagnosis more than any other is parents.

When you have lived with a child for a year or more and everything has gone normally in terms of development, it is understandable that many parents are in denial that their child has a problem.  When Tyus was over the age of 2 years, he still sat and read a book with me like other children his age, as you can see in this video.  You may have (or know someone who has) a child who is showing some signs of delay, but you aren’t sure what the signs of autism are.  You might notice some of the early indicators noted by organizations like Autism Speaks or Autism Society Canada.  If the child is over the age of 2, however, it’s hard to remember at what age they began to babble, even if you noticed there were some early delays.  So, here is my list of things to look for in a toddler:

• would rather play alone than with other children
• doesn’t play “normally” with other kids (may be aggressive, aloof or inappropriate)
• makes little or fleeting eye contact
• draws away from or seeks physical contact (hugs seem painful or the child “rams” into things or people)
• difficulty controlling emotions
• echolalia (repeating words or phrases previously heard – for example, from movies, books or other people)
• repeats certain actions over and over (like hand flapping or spinning)
• can be over- or under-reactive to situations
• focuses excessively on certain things, people or activities (obsessive interests)
• walks on tip-toes or in an otherwise strange manner
• reacts negatively to changes in routine
• strange reactions to stimulus like lights, sounds, smells
• seems to have a very low or very high tolerance to pain
• may have exceptional abilities in one or more areas
• picky eating habits
• poor sleeping habits including trouble falling asleep or waking during the night

This is by no means a comprehensive list.  All people with Autism Spectrum Disorder are different.  Tyus didn’t show all of these signs.  If your child shows even SOME of these signs, or you know another child that does, I cannot stress to you how wonderful diagnosis can be.  I often say that labelling a child autistic is not what makes them different, autism is.  In other words, naming the disorder doesn’t change the child.  The child can only receive your help and the wisdom of so many people once you accept the truth of their complicated mind.  I know children right now that are being expected to be something they can’t because of people who read that list and think, “no, that can’t be it”.  It can and it’s ok.

Eating

Tuesday, January 19th, 2010 | About Autism | 2 Comments

One of the quirks that comes along with an autism diagnosis is problems with eating.  Looking back, this was the very first sign that Tyus would eventually land on the autism spectrum.  From the time he was less than a year old (about the time that food started to have lumps) Tyus was picky.  I recall babysitting another little boy his age and sitting them facing each other so that Tyus might be influenced by his friend eating a weiner.  It turns out that peer pressure has no effect on kids with autism, and so Tyus has still never eaten meat.

A lot of things can influence the problems our kids have with eating.  Sometimes, because of sensory issues, it is a texture problem.  Sometimes it is a problem with rigidity: the food must look the same and have the same packaging as it did yesterday.  Sometimes a child has rules, like everything must be orange or it is inedible.

I cringe when I think about the things I did in an effort to get Tyus to try new things.  I forced food into his mouth, I fed him only one thing until he ate it, and I made him sit in his high chair for hours when he wouldn’t eat his lunch.  If I knew then what I know now, I would never have done those things.  What I have learned is that none of those things work.

The most important thing to understand about the eating problems of children with autism is the difference between picky eaters and problem feeders.  The old stand-by of parents with picky eaters, “They’ll eat when they are hungry enough”, isn’t necessarily true of problem feeders.  Many children have become tube fed or hospitalized because they simply will not eat.

Tyus’ program at school includes a therapeutic snack portion led by his wonderful occupational therapist in which the kids are exposed to a variety of new foods in combination with their old favourites.  This year Tyus ate a dried apple ring at one of these sessions and it has gone on to become a new staple in his repertoire.  It was his first new food in years.

There are a lot of challenges associated with autism that you don’t know about until you are surrounded by them.  We are always working on exposing Tyus to new foods, but in the mean time we buy peanut butter in the jumbo jars and take bagels everywhere we go.

Sleep: an autistic dream

Thursday, November 19th, 2009 | About Autism | 1 Comment

One of the little known facts about autism is that it is often accompanied by a lack of sleep.  Kids with autism don’t produce melatonin as easily as the rest of us, so it often takes them a long time to fall asleep, and if they wake during the night, they have a difficult time getting back to sleep.  Add to that the fact that they don’t care at all that they are supposed to be tired, and you have the ingredients for some very restless nights.

We give Tyus melatonin from a capsule that you can buy at your local health food store and he is asleep within half an hour.  Without it, it would take several hours for him to achieve the same result.  In addition, Tyus takes an iron supplement which has drastically affected the length of his sleep.  We still have many nights where he is up for hours while everyone else attempts to dream, but things are much better than they used to be.

Many children with autism also  have trouble sleeping because of anxiety issues.  They have a lot to worry about, what with being different than everyone else, and often it keeps them up at night.

Sleep affects everyone’s cognitive ability and their ability to cope with stress, but for a child with autism, these things begin at a more difficult level and a lack of sleep just adds fuel to the fire of frustration.

So tonight when you lay your head on your pillow, be glad that your body produces a little substance that tells you it’s time to be sleepy and helps you drift off into la-la-land. I will be silently wishing for a sleep-filled night for my son and thinking about all the moms I know who will be seeing the clock before morning comes.  We all have dreams, and for many of us who live with autism, sleep is the biggest dream of all!

What, exactly, IS autism?

Wednesday, November 11th, 2009 | About Autism | No Comments

*This is the first in a series of posts under the category “About Autism”

I am often asked the above question.  I thought it might be helpful to my faithful readers and any occasional visitors if I tried to unveil some of the mysteries of Autism Spectrum Disorder (ASD).  Autism Society Canada defines ASD as a neurological disorder resulting in a developmental disability that affects communication, social understanding and behaviours, activities and interests.  I like that definition and it says a lot.  The following is my more comprehensive, but hopefully not too complicated, version.

The reason that autism is called a spectrum disorder is because the individuals who are diagnosed with it vary broadly in their presentation of symptoms.  There are, however, some common traits, and these are those things mentioned in the definition given to us above.

There is always a communication component which can vary from completely non-verbal to echolalia (repeating something that has been previously heard, more about this in a future post) to fully verbal, with many other variations that fall between those cracks.  Often even those with the ability to vocalize cannot carry on a typical back-and-forth conversation.  My son Tyus is non-verbal and communicates using pictures.

There is also always a social component.  Individuals with ASD often have difficulty making eye contact, reading facial cues and coping in social situations.  Children often have trouble relating to their peers and engaging in appropriate play.  Tyus rarely plays with other children and doesn’t understand many common social rules.

The final component that Autism Society Canada refers to is behaviours, activities and interests.  Individuals with ASD often engage in repeated behaviours like hand flapping, spinning or hitting themselves.  They often have very restricted interests and prefer to do the same thing over and over.  Another common thread is a rigidity to routine – it is difficult for many individuals with ASD to cope with changes in their environment or daily schedule.  Tyus is very physical and likes to climb and jump.  He often puts things in his mouth and loves to chew.

When you first hear the word autism you may, like many people, think of the movie Rain Man.  Many of the characteristics of ASD are depicted in that movie, but I think it is very important to recognize that Autism Spectrum Disorder is a diagnoses that covers a very broad range of gifts and difficulties.  Individuals with ASD are all very different.  So, no, Tyus can’t go to Vegas with you to count cards!

Almost all of my experience with people who have ASD is with children, and most of that is with Tyus’ classmates.  I am not an expert, but I have learned a lot in the last couple of years.  In future posts I plan to delve into the less-known characteristics of autism that I think you will find interesting.  In the mean time, I hope I have answered the title question for you.  If you still want the quick and dirty version, try this:  It’s a brain thing that makes it difficult to talk, make friends and act ‘normal’!