What Autism Awareness Month Means To Me...

It is April and that means that it is Autism Awareness Month.  I have changed my facebook profile picture to a "Light It Up Blue" pic and ordered my new Autism Awareness Button.  I have even put a cool new Autism Awareness decal on the back glass of my suv.  I am doing all the things an autism mom is supposed to do for the biggest month of the year for a parent raising a child with autism.  Although we should promote awareness every day of every year (which I do always), there is a certain excitement that goes along with April.  It's almost like it's our chance to educate, advocate, and share our children with the rest of the world for thirty days of acceptance.  But what happens after April 30th?  Do we go back to our old ways of apologizing for our children's behavior?  Do we go back to explaining to strangers why our child is headbutting a table in a resteraunt? 

April has opened my eyes that we are only given thirty days to connect with the public.  This is our one opportunity as parents of children with autism to really have our voices heard.  If we only have thirty days to focus on Autism publicly...what should we say?  A blue light bulb is not going to explain to a stranger why my son doesn't know his own name or why public places cause him to have meltdowns.  So...if we only have thirty days...what do we want people to know?  I am not sure people care about statistics or that they care if autism affects more boys than girls.  People want real life...they want explanations...people want clear cut answers...not guesses or perhaps.  For thirty days...the public needs truth, feelings, and emotion...it is the only way to touch people's hearts and we all know the heart controls the brain.  We need to start educating and advocating through people's hearts...then the rest will follow.

This is an abstract list of things I think need to be shared with the public...not statistics...not blue light bulbs...not a puzzle piece...real life things...things that touch people's heart and make them want to understand.

1)  There is nothing in this world more innocent and pure of heart than a child with autism.

2)  When you see a child in public who appears to be misbehaving or having a tantrum...don't judge.  That child probably has autism.  If you aren't sure...just look at his mother's face...if it is tired and creased with worry...then you will know.  Listen to her voice...if it is soothing and calming...then you will know.  If she appears to have zoned out the rest of the world and only sees her child...then you will know.   Don't make assumptions.  If the mother is doing all she can to calm the situation and the child is oblivious to her and the rest of the world...then you will know.  Do not assume.

3)  Don't say..."He doesn't look like he has autism".  This is the number one no-no for a parent raising a child with an autism spectrum disorder.  Autism doesn't have a look...it isn't tangible...it isn't something you can grasp...and it doesn't have tell-tale physical features.  In fact, most children with autism are some of the most physically beautiful children in the world.  A parent of a child with autism has had to learn to accept a professional diagnosis given to their child and everytime a stranger discredits that diagnosis the parent feels like they are at square one.  The correct response to a parent when they tell you that their child has Autism is "Tell me how I can help".

4)  Don't assume that a diagnosis of autism means my child isn't smart or that my child has mental retardation.  These are stereotypes.  Most autistic children have average to above average intelligence...they just have to go about learning a different way.  I like to compare autism to the poem by Robert Frost..."The Road Less Traveled".  People with autism take the road less traveled.  They don't take the easy road that is from point A to point B.  They take the road with lots of turns and twists and curves.  It takes them twice as long to get to their destination but the outcome is the same.  The experience and scenery on the road less traveled is completely different from the beaten path, but the outcome is exactly the same. 

5)  Children with autism aren't blind, hearing impaired, or feeling impaired.  They cry just like you...they hurt just like you.  Ignorant remarks and staring don't just affect and hurt the parents raising an autistic child but the child hears them, as well.  Children with autism have enough challenges to face than to be the focus of public scrutiny and ridicule.

6)  All children with autism are not in special education classrooms.  Don't think teaching your household about autism doesn't apply to you or your children because you don't think you will ever come in contact with a child on the spectrum.  A lot of children with high functioning autism and aspergers syndrome excel academically and are educated in mainstream classrooms.  This does not mean that they still don't have social deficits, sensory issues, and difficulty making friends and interacting.  If you educate your children to be tolerant of people's differences you could be helping a child with autism be accepted by other peers and you would be helping remove the social stigma related to autism.

7)  Don't insist on trying to cure a family member or friend's child with autism.  As far as we know there isn't a cure and right now all we have are treatments and therapies that help to develop communication, aggressions, anxiety, and social skills.  Know that a parent of a child with autism is making every effort to help their child to grow and develop into the best adult that they can be.  Giving parenting advice or behavioral advice is not appropriate to a parent raising a child with autism.  They are getting all of the advice they need from pediatricians, therapists, behavioral specialists, and special education teachers.  Don't add to the list because I can assure you that this parent is already up to their eyeballs in advice.  A "spanking" or "time-out" is not going to cure autism.  Making a child "face their fears" is not going to cure autism.  Let the parent do their job.  If you want to support them...offer a hug or a shoulder to lean on.

These are the things that I think people need to hear.  They need to hear it straight from the heart.  The heart speaks to the mind and if we start addressing people on an emotional level then they will start to understand autism on an intellectual level.  Tolerance and understanding are not going to happen through statistics, numbers, facts, slideshows, articles...they will come about from love.  I will continue to "light it up blue" because it is Autism Awareness Month, but I'm sure as I have ever been that we have got to start getting into people's hearts if we want true awareness.

"Imperfection Is Beauty"

“Imperfection is Beauty”

By Jessica Hill

　

　

“Isolation,”, they say, “is what he will crave.”

although I haven’t talked to my friends in over a week.

“Spinning and stimming will keep him calm”

But, serenity is what I so desperately seek.

“Order and routine must be kept”

as I am searching for my keys and my phone.

How can I raise this autistic child

when I am a mess all my own?

I have read all the symptoms, stories, and books,

but where is the manual for coping with dirty looks.

“This child will scream, cry, and wail.”

But that is what I do on the inside, just no one can tell.

“These children need to take sensory breaks”

But, what about the mother whose had all she can take?

“Mothers are chosen for these children who are special and dear.”

But, why would God trust me when it’s Autism I fear?

I’ve read all the rules and seen all the signs,

but I’m barely keeping it between the lines.

“These parents must be patient, faithful, and strong”

But, most days it seems like all I do is wrong.

“This child won’t be verbal. He won’t express his needs.”

I may not always understand but I will follow where he leads.

　

　

　

　

　

　

　

　

　

　

Sometimes I Forget...

My oldest son is so high functioning on the autism spectrum that I actually sometimes forget he has Asperger's Syndrome.  I am quickly reminded of this if I break a routine or try something different during the week that we don't normally try.  Routines are the biggest tell-tale sign that my son has Asperger's.

I am also reminded with a simple response.  This afternoon, after picking the older boys up from school, I head to the bank machine instead of going straight home (which I will probably pay dearly for later...but anyhoo).  After taking the cash out of the ATM, I asked the boys would they like a milkshake which they both bobbed their heads up and down for yes.  As we were sitting in the drive-thru line at McDonald's the lady at the window snapped at me and snatched my debit card.  I looked over at my Aspie and said, "She needs an attitude adjustment".  He looked over at me and replied, "She sure does".  He was quiet for a minute while we waited for our food and for one moment in time I smiled and thought..."this is so nice and everything seems as it should."  For once I was actually having a conversation with my son about someone else's social graces and he was commenting on the lack there of.  This is progress, I thought.

He then turned his face up at mine and smiled and said "She needs a dose of John Cena.  John Cena in 2003 challenged Brock Lesnar to a WWE match that he called "Attitude Adjustment" and at the end of this match he would use the term "FU" and people thought it was inappropriate.  So after years of giving people "attitude adjustments" there was so much scandal about the "FU" at the end that he finally stopped using the term at all.  Now he is just famous for slogans like "U Can't See Me" and "WordLife", but "attitude adjustment" was actually the first slogan that John Cena was ever associated with." 

This entire monologue went down with me passing a drink across the backseat to his brother and distributing food.  The lady at the drive through was oblivious to his speech and as far as I know had no idea who John Cena was.  I was, more than anything else, just trying to figure how we got on a four-hour dissertation on John Cena when I was making a mere comment on the drive-thru ladies lack of customer service skills. 

As I was pulling the car away from the window, he cranked up for round two.  "Mom, did you know that John Cena was in Hannah Montana and Fred: The Movie?"  No, no son, I didn't know that.  We drove home and for the next 15 minutes we were all filled in on John Cena's entire wrestling career, guest appearances, and special wrestling techniques. 

Sometimes I forget...but I am quickly reminded.

It's My Party And I'll Scream If I Want To

It was dreaded and I held my breath and prayed about it.  A simple two year old birthday party.  But the two year old isn't simple...in fact...quite complex.  How do you throw a birthday party for a little boy with Autism?  I read and researched some articles online...but still relating everyone's experiences to my own personal experience is sometimes not easy to do.

I kept it simple...a few friends and family.  They all gathered in the living room.  Logan stayed in the kitchen.  While all of his cousins were running around playing hide and seek or playing with his toys, he was standing at the refridgerator rearranging the magnets. 

Time to sing "Happy Birthday"!!!  We had to drag him to the table and everyone gathered around.  He smiled...no tears, thank goodness!  But obviously quite awkward with everyone staring.  He actually attempted to blow out his own candles.  I was amazed.

Next up...presents.  We had to keep dragging him back to open the presents...he was more pre-occupied with the Spongebob tablecloths that were blowing in the breeze on our back deck.  Finally, once he was engaged with opening the first few presents he got the hang of it. 

Then the madness ensued.  His cousin, who is five days younger, started to play with the new toys and Logan went ballistic.  He physically attacked the child...scratching, shoving, pushing, and pulling.  This went on over and over and over and then it would happen for no reason.  All this child had to do was walk across the room and Logan would run over and slap him in the face.  His senses were beginning to overload and the party was beginning to take it's turn to the dark side.

Once he was removed from the situation for the 4th or 5th time, he began to meltdown.  Screaming, headbanging, slapping, and hitting me and himself.  I took him out of the room again to calm him.  This finally cued everyone in that the party was over.

Lesson learned:  two year old birthday parties for autistic children may be more about the parent than the child. 

Note To Self:  Next year's birthday should be about better planning and sensory control and if that doesn't work maybe birthday parties are overrated?

"Somebody Needs A Nap"

Here we go again...Logan has taken his shoes and socks off and thrown them on the floor in Target again.  I know this because as I have walked up and down the last four aisles at least three people have stopped me and said "Your son doesn't have any shoes or socks on" and "poor fella...did Mommy take you out today without any shoes or socks?".  With gritted teeth, I whip my cart around and backtrack (like I do everytime) and follow the trail of ankle socks and tennis shoes until I find them all and chunk them in the back of the cart...no use putting them back on him and pressing rewind.

Just a small list today...deodorant, mouthwash, Tylenol, and a new calendar for Landon's baseball games...shouldn't be too hard right?  I stop the cart to get the Tylenol and as I am trying to decide whether we need extra-strength (yes, yes, yes...extra-strength!) or coated capsules, the head-banging begins.  I hear the first thud against the cart handle and turn around and there he goes...banging away and then the screaming ensues.  I casually put my hand on the bar to brace my baby's forehead from being busted open and continue to look for the Tylenol...no big thing...we do this every week.  Hurry up...hurry...which one...pick one...if you don't hurry he is going to start biting himself!  Name brand or store brand...hurry...before someone sees him and comes over to "lend a hand".  Crap...too late!  An older lady with silvery-blue (yes, I said blue) hair is heading straight for us.  With a slight hunch in her shoulders, she bends down and attempts to look my son in the eyes and he fails to meet her stare.  I continued to look the shelves over...maybe if I ignore her she will go away.  No such luck.

"Hey there, little man...what's got you so upset?  Looks like somebody needs a nap."  She did it...she spoke those dreaded words...the ones that make me crazy.  Uggggghhhhhh!!!!  Lady, it is nine o'clock in the morning...he does not get a nap until after lunch.  I held it in...and swirled it around on the tip of my tongue before I bit down and clamped my mouth shut.  Go away...that's right little old woman...walk away.  I do not need to be brought up on elder abuse charges today. 

I slowly looked over my shoulder and she was still standing there staring at my son and he was still banging and screaming away.  She caught me glancing and then started the lecture...I am sure you know the one I am speaking of...the one I get from someone everytime I take my son into a store.  It starts out like this..."You know when I was coming up children didn't act like this.  If I had misbehaved this way when I was a girl, my daddy would have walked me outside and snipped of a branch of a mulberry bush and tore my tail up.  We knew better." 

Breathe...breathe...breathe...calm down...count to ten.  That's it...turn around and tell her like you rehearsed it..."Ma'am, my son is not misbehaving.  He has Autism, a developmental disability that affects one in 110 children.  What looks like a tantrum to you is actually a sensory meltdown.  But, thank you for your concern.  Have a nice day". 

She wrinkled up her face and turned and walked away.  As she was leaving I could hear her say under her breath..."Autism...pffffft...never heard of such a thing".

Now...where are the calendars?

 

The Cold Hard Truth

This blog was written when I first got the diagnosis of Autism for my youngest son.  I transferred this blog to Diary of An Autism Mom...

Well, after a devastating year of appointments, specialists, evaluations, and therapies, we were told last week that my 20 month old son has Autism.  It shouldn't have been a surprise.  He is the baby of four boys with the oldest having Asperger's Syndrome.  I should already know the signs and symptoms but to really wrap my head around having two children on the Autism Spectrum Disorder is disheartening to me. 

He was diagnosed with a trisomy of the SHOX gene of the X chromosome in September but it is a very rare mutation and he is only the 6th person reported to have this mutation.  With nothing to compare his symptoms to other than the genetic disorder I had sort of placed all of his developmental delays and sensory components on the fact that he had a chromosome problems. 

When the panel of child psychologists and therapists rendered their very grim diagnosis I felt like the room was spinning and it was like everything was moving in slow motion.  Autism...again...it can't be.  But it was and it is.  Now learning how to cope with a child that isn't high functioning like my twelve year old son.   Although socially and behaviorally dysfunctional, my oldest child is very smart and considered to be academically gifted in school.  We are at least able to communicate with him about his diagnosis and point out things he needs to work on.  Not sure now how to deal with the diagnosis of classic Autism in my baby considering they told us his social, cognitive, and adaptive skills are that of a 12 month old. 

But I will find a way...I will not hide under the covers...I will march on.  I will educate myself and others.  I will continue to find every outlet for my child.  I will promote as many therapies that accomodate his weakness and will congratulate his strengths.  I am going to make every effort to try to ensure he will have a fighting chance once he enters the school system.  And I will pray.  That is all we can do as parents faced with the hard cold truth about Autism.  We fight and we pray and sometimes we laugh and cry.  At the end of the day we lay our head down and close our eyes knowing we have done all we can do for our children and somehow that will be enough.

Life With Spongebob

Raising an autistic child is difficult...no scratch that...perplexing and eluding.  Some days are great and others...well, not so much.  From meltdowns to clothing issues to food textures to public outings to changes in routines...it is like running in a hamster wheel.  I run and run and run but yet I am in the same place. 

My youngest child is two and has classic Autism.  One thing with Autism is even when the child is verbal their communication is limited.  They have what is considered literal language.  Therefore, a few weeks ago we told him that his favorite cartoon character's name is "Spongebob".  But...the quotations were put around the wrong word.  For the only word my son heard was "name".  Now...he believes his name is Spongebob and calls himself such and he calls his mother, Spongebob, and his dad, and his brothers, and anyone else.  But he only associates the word Spongebob with the word name...for example...if I were to poing to his dad and say "What's his name?", my son would reply "Spongebob" and he does this whenever we ask him someone's or his own name.  Word associations...simple things that we take for granted.  Same thing with the question "What do you want?"  I answered this question for him once and said "Juice".  Now he thinks the only answer to the question "What do you want?" is "Juice"...even if he wants something completely different.  It is frustrating...mentally he is wanting a certain toy but he is telling me "juice" and when I hand him a cup of juice he throws in in the floor and begins to scream and headbutt. 

It is almost like being a foreigner in a strange land...where no one understands you.  You have needs and wants but no one can accomodate you.  For as challenging as this is to me, I can't begin to imagine what it is like for my child who can't communicate his feelings to me.  It is so hurtful and sad most days...but then there are those days when I can ask him what his name is and he shouts "Spongebob" and I see that little face and it doesn't matter.  He is my Spongebob and no one can take that away.

"While You Were Staring"

While You Were Staring

By Jessica Hill

　

While you were staring

you could have picked up my purse.

I dropped it while my son was crying

And while you’re at it

could you muster a smile,

because my son is really trying

While you are huffing

and rolling your eyes

Could you understand that

loud noises catch him by surprise

While you were judging

my parenting skills

you failed to realize

how my son really feels

While you were whispering

“that child is a brat”

You missed what

caused him to behave like that.

If you would stop

and take a minute

to open your mind,

a child who is lost

in a world of sounds, sights, and smells

is what you would find.

Lending your hand or an understanding smile

would make the life easier

for someone raising

an autistic child.