The Dark Side of Autism

It's not that I have forgotten about this blog, that's not why I stopped posting. I stopped posting because when things are hard and bleak it was just one more thing pulling at me.

Here's an update in our world.



The Doodle is now 10 and for the most part, his seizures are under control with medication but his Autism and OCD is off the charts. As he gets older, he continues to regress and it's still very  hard to teach him things--especially patience. We had a serious cancer scare in 2013 and almost lost him.

He's still not potty trained and still doesn't speak one word but he does give some of the best hugs I've ever had so we have that going for us.

Jimmy is 17 and is a Junior in high school now. We couldn't be more proud of the kind and compassionate man he has become!

I've been busy over the last few years--I wrote a book about our story, published by Morgan James, The Dark Side of Autism

YOU CAN PURCHASE THE BOOK HERE ON AMAZON

If you've read the blog at all, it is a combination of stories and experiences raising a very special needs boy. Hopefully, some parents and/or caregivers will relate to my frustration along this incredibly difficult journey. It's a raw, heartfelt story of coping and acceptance at it's core. Without giving too much away (lol) it's not a feel-good story with a happy ending so be prepared.

Nightmare on McDonald Avenue

You've heard of Nightmare on Elm Street right?  Well taking the Doodle trick-or-treating turned out to be a weird, twisted sequel I'd like to call "Nightmare on McDonald Avenue".

No patience.
No parking.
Too many people.
A forgotten cell phone.
And a crabby Doodle dressed as a Fireman.

So after getting dropped off by a frustrated husband because he couldn't find a place to park--for a night of pure terror and chaos in the streets of the McDonald area with thousands of people pushing their way around the neighborhood, standing in line after line at house after house to get the token piece of candy, I was ready for a Xanex. 

Oh but the Candy.  The Doodle doesn't even eat candy and could care less about it.  Had they been passing out chips and salsa the night may have taken a turn for the better but he did not understand the concept of walking door to door to get something he doesn't care two craps about dropped into his Thomas the Train bucket.

He liked walking to the door, but he expected to stay awhile - maybe get invited in for a snack of Doritos and a turn at their universal remote.  He didn't like walking up to the door and then having to leave. He cried at each house. He was very disapointed.

So we left after 5 houses.  But now Jim was gone with the car since he couldn't find parking and the plan was I was supposed to call him to come back and pick us up.  But, with no cell phone--it became a true nightmare.  Did you know they don't have pay phones anymore?  Not like they used to anyway.  We walked a few blocks over to the Market and they almost laughed at me when I asked where the pay phone was....By now the Doodle was ready to go home.  And I can't let go of his hand for one second because he would bolt.  So they felt sorry for me and let me use their phone to call Jim. 

We waited for what seemed like an eternity for Jim to pick us up in front of the market.  And we chalked this Halloween night up to a huge learning experience as I binged on the candy from the Thomas bucket on the way home and thought about how the Jehovah Witness people are on to something with regard to not celebrating Halloween.  Sometimes I kick myself for even trying...then I look over at my giant 12 year old and think about how this must really suck for him.  He could have been trick or treating with his friends in his weird Coach Frank tennis suit costume that no one could figure out.

Autism is lonely. But any holiday or special occasion really reminds me of how lonely and cruel it truly is.

Through My Eyes by Scott James

My new favorite and inspiring video/song.  This song is sung by a young man with Aspergers--and has been widely recognized in "our" community.  The Autism Community.  Interesting to hear, from someone on the Autism Spectrum, what it might feel like to be different.

http://youtu.be/UGCrzmJfwcE

'Through My Eyes' - Lyrics

See the world through my eyes

It changes shape and it changes size

It's not quite the world you see

If you could find a way to look around inside my mind

Maybe you would understand me

-Chorus-

I'm not blind, but I can't always see

I'm not deaf, but things can sound strange to me

I'm not trapped, but it's hard to feel free

Imagine what it's like to be me

Imagine what it's like to be me

It's hard for me to try to think things through or talk like you

Everything can be a blur sometimes

But if you walk along beside me, hold my hand and guide me

Together any mountain we can climb

(Repeat Chorus)

I'm dreaming of my future and it's brighter than you know

I'll get there on a different road when I am ready to go

I don't need pity, I don't need tears

I just need someone to help me understand my fears

Tell me you believe in me, let me know that i'm OK

Help me feel safe in the world, and I will find my way

(Repeat Chorus)

Imagine what it's like

Imagine seeing the world Through My Eyes

(Lyrics by Valerie Foley, Music by Fiona Johnson, Video by Phil 'Putnam' Spencer)

Eye Contact Speaks Volumes

For being autistic, this little Doodle has one of the most intense gazes I've ever seen.  My friend was over the other day and said he communicates so intently with his eyes.  And she's right.  He may still be nonverbal, but that doesn't stop him from speaking to us with his eyes and gestures.  He is masterful at letting us know exactly what he wants when he wants it.  He'll take your hand and lead you or grab your face until you look at him and he knows that you get what it is he wants.  If you happen to not understand him, he's tenacious and makes sure he can get you to figure it out whether it be with pictures, pointing or screaming if you're taking too long.  No words necessary.

If he could talk he'd probably say: speech can be so overated.

July 4th - Our Own Kind of Fireworks

Every day is like the Fourth of July when you have a child with Autism.
Spectacular colorful explosions in the form of salsa flying and fantastic displays of emotion rather than blowing up fireworks in the sky.
Similar.  But different.
It was hot here--so we hung out in the back yard and played in the water.
We skipped the fireworks for obvious reasons.
Crowds.
Fear.
Noise.
The over-stimulation factor.
The irony of the predictable amount of unpredictable; our life in a nut shell.
On the bright side, the Doodle is really getting good at throwing a ball.

What I'm Reading

There's a reason for everything, right?  Yet, I struggle every day with wondering why. If I could just understand the reason, it would make this easier.

I'm still trying to find the hidden blessings in the autism--and come to terms with it.  I'll be honest. I can't always see the positive aspects and "blessings" of this disorder.  Maybe reading this will help me open my mind and understand why other people can see the Good in autism when I want to be rid of it.

We are still nonverbal - completely.

We still have behavior and OCD issues.

We still have seizure activity.

But, we still have hope.

Doodle-proofing

It's kind of like child proofing but different because we're dealing with a very ingenuitive 4 year old who has the attitude "where there's a will, there's a way".  He's got a handful of things he obsesses about--so we have come up with creative ways to divert him.  The problem is once you eliminate one thing from his determination, he is quickly onto the next thing. It's a rarity that he is just calm and sitting.  He is constantly on the move and repeatedly into something he's not supposed to be.  Toys?  Nah.  He'd rather pull the lid off something in the refrigerator or stick something in the microwave and turn it on.  I just put a padlock on the tv cabinet with the dvd player because he could masterfully operate all of the electronic equipment.  I had to move our tv/dvd in the bedroom way up high and get rid of our armoire that I loved because he could reach in there and destroy things. 

Our remotes are all kept out of reach.  The DVDs are hidden.  The pantry now has a lock. Our sliders all have tension rods in them.  We tie the refrigerator closed with a red ribbon which must be tied in a double knot or he can get it open.  We block our front door with a couch.  The stereo and cd player have been purposely unplugged and the pine cabinet it sits in has been nailed shut.  Come to the front door and it might take a minute while I move the fancy furniture arrangement which acts as a barricade to keep him from escaping.  I've asked Jim if it might be possible to bring home some cement K-Rail from one of his jobs because if the Doodle really puts his back into it, he can move the furniture--yes, he's strong.

Besides salsa and taking the lids off of drinks and dumping them out, his absolute favorite thing to do now is to run out the front door and try all the car doors to see if by chance any of them are unlocked.  He loves to sit in the car and press all the buttons and flip the mirror down and check himself out and it's a big Christmas bonus if we've left the remote for the garage in there.  He likes to get all the garage doors opening and closing at the same time; it must make him feel like he's in charge of something grand.  He likes to play Chinese fire drill and get out and run around the car and get back in and climb over the seats and get out and get back in and so forth.  It's not hurting much--but I fear he is going to slam his hand in the door because car doors are heavy for a four year old and I know it's a matter of time. What's that you say?  Try locking the car doors.  Uhm, yes.  We do that.  He now will go into the drawer where we keep our keys or even into my purse in order to find the keys and he runs outside with them--hitting the buttons on the key-faub-remote.  Sometimes he gets lucky and hits the unlock button, other times he just sets off the alarm.  Regardless of which thing he is ocd'ing about--I am constantly yelling "No, No, No, No, No".  The word "NO" does not phase him.  Neither does: Stop, Put it down and Get Back Here.  What happened to the good old days when he would walk around pushing his little cart and obsess about that?  At least that was just one thing to obsess about and it was managable and harmless.

I'm not sure what this all means.  I keep waiting for him to grow out of "it".  But I know he won't.  The OCD is part of him just like his brown hair and green eyes.

I can't fathom the joy that these odd things bring to my son.  He'd rather turn the lights and equipment in our house on and off than play with fabulous toys that he has which he has no interest in.  Obsessive Compulsive Disorder--just one more special little gift from the family of autism we get to enjoy.

The Witching Hour

It's 11:30, do you know where your little witch is?

One of the little gifts of autism that keeps on giving for us is the insomnia and bad sleep patterns.

We've been through it all in the middle of the night:  sleep apnea, night terrors, infantile spasms, teeth-grinding, bed wetting, seizures. 

Sleep is no longer restful for me; not when you wrestle a 48 pound back-kicker all night to give you an inch of your pillow back.

It's hard to get this little guy in bed and asleep by 11:00pm.

The 7:30pm and 8:00pm catnaps don't help either.

If he goes to bed, say 9:00pm, he's up at 11:00pm and it's even worse than keeping him up late.

"He walked into the party, like he was walking on to a yacht.

His (witch) hat strategically dipped below one eye, his jammies were apricot.

He's so vain.  He probably thinks this post is about him, he's so vain."

Autism is Lonely

I can honestly say I've never felt more alone than I have in my cocoon of autism.

But, on the bright side, in the last week I have connected with two other moms with children on the Autism Spectrum.  The autism spectrum is so very wide and vast and different--it's hard to find someone who may have a child that is the same age and with the same issues.  But we're all connected and get it, you can see that by the identifying us with the same exact look of exhaustion and pain on our faces.

Today I met my new friend for coffee and she was so very kind.  She shared so much with me, and that takes a lot.  She opened her heart and her life to a complete stranger and I did the same. 

It's completely different talking to someone and knowing that what you are saying is being heard loud and clear, and the best part is that there is a level of empathy there that others cannot comprehend unless you have been in our shoes and have to experience what we experience on a day to day basis.  It felt like a huge weight was lifted just knowing she understood what I was saying and not judging me.  I didn't have to choose my words carefully or not mention something.  Today I could just be me, the Angela with the autistic son and the stressful life filled with worry and about a hundred other emotions.

Like it or not, Autism is my (new) world.  And as much as I've tried to hope that one day the Doodle will magically get better, I need to be prepared for the fact that he may not.  And that's ok to.

Is lonliess in God's plan? 

I know that he has a plan for us.  He has a plan for the Doodle and while I hate to accept it, at some point I must surrender and realize that I have no control over the Autism severity that the Doodle has.   There's `lots I can do and try to do and hope that they might improve and help his "condition" but is there really a complete cure for autism. I wonder.

10 Clowns Don't Make a Circus

Went to the grocery store with the Doodle tonight. 

Thought ah, what the heck, my Friday night is shot--I have no life, why should I keep all the excitement of picking out ripe avocados and peanut butter to myself. 

It's not an easy decision you know.  Creamy or chunky.  It could go either way.

So I threw a hat and a sweatshirt on the Doodle since it's been freakishly cold around here in the middle of, ahem, summer.  And I told him to get his shoes.  Of course he ran in into the bedroom and picked out the rain boots and who am I to judge?  Maybe he has the sixth sense of a meteorologist and a built in Doppler radar and can detect when a storm is coming. Besides, the blue and yellow boots complimented his multi-colored striped pajama pants well. 

So off to the store we went.  What other kid starts clapping his hands and shrieking when you pull into a Safeway parking lot?  I looked in the rear view mirror and saw that giant smile on his face and knew I had made his night.

It was only going to get better for him, I could see the look of excitement and anticipation on his face.

He must have a photographic memory along with his keen sense of direction because he definitely knows his way around the super market.  He knows exactly where the chips isle is.  Maybe he can smell them.  It doesn't help that they put bags of chips, namely Doritos, at every checkout stand, end cap, sale station and deli section of the store.  Now that I told you about this weird Doritos phenomena, watch...the next time you go shopping you will see Doritos are everywhere.

So, first off, we head to the chip isle as he so eloquently points and grunts toward to get his Blue Cool Ranch Family Size bag of Doritos fix.  It's like Christmas in August for him.

While shopping, I can't help notice all of the people staring at us.  I'm generally used to it, but tonight it hit me, maybe I shouldn't dress the autistic kid in weird clothing combinations.  Maybe it was the Jester Fleece Hat with the Bells that made a statement without saying a word as we jingled our way through the store.  Or maybe it was the striped pants and the rain boots.  I'm sure it wasn't the flapping of the arms or the yelling when he didn't get his way, or the way he tried to grab onto other people's carts as we passed by them in the isles and stared at them with that intense look of a midget Jester.  Or maybe it was how he dove his hand into my shirt when we were waiting for our turn in the check out line.  All I could think was what a great show the security bubbles in the ceiling were getting of my bra.

So the question here is am I making it worse for the Doodle (and me too) by dressing him in silly, funky outfits?   Maybe Safeway shoppers just weren't ready for the Jester hat.  It's not like when I dress him in cute normal clothes, people think he's not autistic.

Diversions and the Garden Hose

Jim describes living with autism like trying to plug up a leak in a garden hose. You plug up one hole and the water will shoot out somewhere else.

How do you get a melting down autistic boy with OCD to stop obsessing about something? Easy. You divert his attention away and give him something else to OCD about.

When the Doodle is going nuts and is on his 9th bag of Doritos and 2nd jar of salsa, we tell him he gets to pick out a DVD and then after he has picked out nineteen DVD's and each time you put one in the machine and start it and he screams his version of NO at you, and you just can't take anymore then you take him outside to play with one of his carts. When he throws a giant fit outside and runs away and doesn't want to come in, we tell him he's going to take a bath. How then do we get him out of the tub since he doesn't want to get out of the tub? Hmmm. I guess I should have thought through a little better because he's still in there. I know, I'll entice him into getting out of the tub with a bag of...Doritos.

Say It Aint So

"Popular estimates of the divorce rate of parents of children with autism are 80 percent and above," said Lori Warner, director of Michigan's Beaumont Hospital's HOPE Center, which works with children who show signs of autism.

"Parents of children with autism are at higher risk for anxiety and depression," Warner said.

No shit lady.

I can attest to both of those opinions, it does put a strain on your marriage (and most other relationships); especially if one person feels like they are taking on the brunt of the care and the other one doesn't help out so much. Or care as much. Or get involved as much.

And you do get worn down to the point of depression because you can never fully understanding the WHY in this. You can't help but feel responsible. Even if you don't feel responsible for the autism condition constantly asking yourself how you could have prevented it? You feel responsible for bringing this little person into the world who now has to cope with all of these challenges for the rest of his/her life.

One of my favorite Hollywood couples just broke up. I thought they were the perfect couple and had it all. The Queen Spokesperson for DAN! Doctors and Autism advocate and America's funny guy announced their break up over Twitter.

Just two months ago, on Valentine's Day, Jim Carey hired a plane to write "J Hearts J" across the Los Angeles skyline to his girlfriend Jenny McCarthy. He had said that her son, Evan, taught him how to love.

Jenny McCarthy has openly discussed that the stress of their son's autism is why she and her first husband, John Asher, divorced in 2005.

But this time around seemed different. She seemed to have nothing but support and love from Jim Carey. She was so involved in autism awareness and Jim Carey was always by her side.

She concludes that she cured her son of autism with diet, detox and therapies; which would mean that the speculation that the stress of autism contributing to the break up is a bunch of hooey. Right?

Like the Weather

We've had a rainy couple of weeks around these parts. We live in the Sonoma County Wine Country in not-so-sunny California. This Spring has been a wet one, and I'm not complaining because we definitely need the rain.

But Spring here is tricky. It rains and rains and then all of a sudden there is a break in the clouds and the sun pokes it's head through long enough to remind you what it is like to have it's warmth on your face...what it feels like to go outside in shorts and no jacket. Suddenly you find your self opening your windows to let the fresh air inside, you start taking walks, working in the garden and firing up the BBQ and just as you begin to make plans for a bike ride or weekend picnic, it rains again with no end in sight.

We had a few beautiful, warm spring days and then it was so cold it was dumping hail. You can't get too comfortable or confident with the weather because one thing we do know about it, it's going to change. Again. It's as if mother nature is just messing with us.

And today as I watched the downpour from my kitchen window quickly change to sunshine, I thought about how similar Autism is to the weather. It's unpredictable but expected. Constantly changing but always the same. Bright with patches of darkness. Hopeful, yet sometimes very bleak. Stormy, wild and turbulent with heavy gusts.

Meteorologists refer to repeating weather as a weather pattern. It is common for the weather to become locked in a repeating pattern for a period of a few days. I live with a similar weather pattern in the form of a 3 year old with OCD tendencies. We go from several days of being locked on the channel changer to several days eating Doritos or throwing things out the front door. If you ever come by and there are carts and toys and other miscellaneous items strewn about on the front porch and walkway, that's what that is all about.

Being the Doodle's mom is an adventure, you might say I'm a "storm chaser". Chasing after his fits and tantrums and the aftermath of his hurricane like actions. Then when you add in the extra trails of trying to take a decent picture of him, well, then it's more like a Survivor Challenge. Like the weather, you have no choice or control. In some ways, you are completely helpless and at the mercy of the "storm". Some days are worse than others and all you can do is accept it for what it is.

So as I thought about all of the things I could be doing if it wasn't raining and as I wished for the rain to stop I remembered one of my favorite quotes, "Without rain, there would be no rainbows".

PECS

No, I'm not talking about these kind of PECS, although they are quite remarkable.











I'm talking about these kind of PECS.
If you ever come to my house you might see a bunch of these laying around, hanging on the walls, stuck to the refrigerator and in every room. We're trying out a Picture Exchange Communication System with the Doodle. They've been working on it with him at school and during his Shape appointments but it hasn't worked out too well at HOME as in the every day.

PECS is a way for nonverbal children to be able to communicate what they want or need by identifying a little picture icon and exchanging it for what they want. It sounds wonderful and in a perfect Doodle world would be an ideal way for him to communicate with us.

Sigh.

But we don't live in a perfect Doodle world. We live in OCD Land where the PECS icons have become an obsession. We've tried putting them in a binder, on a board, on a laminated sheet and all the Doodle wants to do is play with them and move them and reposition them and wad them up and see if he can rip them or flush them down the toilet. He got to be so crazy with wanting control of the PECS that the system became a bit of a nightmare here at home because there were too many pictures, too many choices and too many NO's.

He would see the binder on the counter and either climb up there and get it himself or insist on wanting it. Well of course I'm going to give it to him, because I think, OH GREAT. HE'S COMMUNICATING WITH ME. HE'S GOING TO GIVE ME A PICTURE RIGHT NOW OF WHAT HE WANTS.

But he can't decide. There's too many choices, too many things...and he'd rather just play with it and destroy it or throw it on the ground.

So the binder got to be a bit much and we had to hide it from him. Then I'm sitting there scratching my head and wondering how productive this can be if I have to hide it from him? Because if I hide it then no one is communicating anything with it. Maybe it's too soon.

How they do the PECS at school is more for a schedule of what is next, not so much choices...big difference.

He has a little laminated Velcro schedule that sticks to the wall out of his reach and it has the things he's going to do at school. So when it's circle time, with direction, he can go to his schedule and with supervision of the icons, take the circle time icon off the little board and walk over to circle time and sit down with the little picture in his hand. Same goes for lunch, bus, outside play. And that is working well. There. At school.

So I am now trying to figure out a way to replicate that same system here at home, but where I can control the icons and what they are. Because right now, if he gets his little hands on the outside icon, and he hands it to me...no matter what time of day or night or what the weather might be, he expects to go outside. And it's pretty hard after he's gone to the trouble to dig out this little icon picture of "outside" and he's communicating and requesting what he wants and then I have to tell him No. He gets really mad and even more frustrated because he really, truly does not understand why I'm telling him no and he expects instant gratification especially when he's "working" for it.

Betsy had taken several pictures of his favorite foods too: Very Vanilla Soy Milk, Cheetos, Spaghetti O's, Cereal, Gold Fish Crackers, Yoplait, etc. (I know, the breakfast of champions right?) The problem with the pictures of food is if he can see them on the card he expects that we have it and that I will give it to him. NOW. But, maybe I haven't been to the grocery store in a while and God forbid we're out of Doritos, the BLUE KIND and the Doodle brings me the Doritos card! What now? With a normal child you can reason with them, redirect them, offer them something else, satisfy them with a game or bubbles or the RED Doritos. Throw autism in there and you get to run to the closest 7-11 at 8:00am or the rest of your day (and his) will be a disaster.

So I've been busy devising my plan for PECS in our home. I have printed up hundreds of icon pictures and designed cute little framed boards to be hung out of his reach with pictures of basic things he does. I bought a laminator and I'm throwing caution to the wind and hoping he will get it without constantly melting down about this.

I'm hoping after some time, he will really get it and understand it and feel better about communicating with us. And then we will all be more:

So Close

Just when I think the Doodle has no idea of what is going on, he surprises me. He flirts with me. He hams it up for the camera. He knows if I'm gone because my mom tells me he goes and checks outside from the window to see if my car is parked in front.He cracks up watching his silly shows, does he really get it? He knows when he's not supposed to do something, I can tell because of the way he looks at me. He puts the phone up to his ear and then gets embarrassed. He can point to almost all of his body parts. He can open a can with a battery operated can opener. He can expertly operate a throttle on a dirt bike. He can peddle his bike. He's learning more signs. He's making more sounds. He gives himself time outs. When he wants something he goes and gets it or points. He loves to help and get things out of the refrigerator, pantry, drawers. He likes to help bring the groceries in. When you ask him if he wants to go bye bye or outside, he gets his helmet and shoes. He even knows the dog is there, although he refuses to acknowledge him.

He copies things he sees on t.v. He cleans up when you ask him to.

He gets things. He understands almost everything we say. It just has to be on his terms when he wants to. And I wish I knew what it was that isn't connected up there correctly in that little noggin of his that makes him process information differently, slower, delayed. I wonder if he can only hear certain sounds or key words and that's why sometimes when I tell him to "look at me" he leans in to give me kiss, as if I've said, "kiss me".

He's super affectionate and makes great eye contact; always has. It's why the fraud Dr. Julie Griffith, San Rafael, CA told us he wasn't autistic...the other day his little 4 year old cousin Zoe came over and he kept hugging her and trying to kiss her. Then he accidently lost his balance and all 44 pound of him tackled her.

He's always had a delay when you ask him to do something. I can say, "where's your nose?" and he stares at me with a blank look although I know he heard me. Then if I say, "where's your tummy?" He waits a second and then points to his nose. It's as if he's one command behind. Now when I ask him to do something or show me something, I know I have to say it at least two times before he gets it.

We're so close but yet so far. Welcome to autism.

Praying for a Cure

I recently got into an online discussion with a fellow blogger about a completely hypothetical topic that has been popping up on several blogs about autism. Now keep in mind this is completely fantasy and I know it, and hopefully these other bloggers know it too.

The argument is about what if there was this (hypothetical) magical pill that you could give your child to cure autism...would you give it?

So I was reading this woman's post about how she probably wouldn't give it to her child because it would be too scary for the autistic child to suddenly be "normal" after being autistic and that normal isn't all it's cracked up to be and how autistic people can lead happy and fulfilling lives and how you can be normal and get worse things, like cancer; and basically how terrific autistic children are and how she doesn't feel the need to try to "fix" her child because they have accepted the child, embraced the autism and love her all the same (I'm paraphrasing here).

While I completely respect her opinion, I felt compelled to chime in on the comment board because it really struck a cord with me.

First of all, autism is anything but beautiful. I don't care who you are. The child is beautiful; the child's soul and heart and spirit...all beautiful. But to talk about autism as this wonderful and precious gift, I think, is in some way trying to be almost righteous about it. Like, isn't my child special, he's autistic? As if autistic children are the "chosen" ones.

I know that some autistic people live happy and healthy lives. But talk to any verbal high functioning autistic adult who can put into words what it is like to be autistic and most will tell you how they cannot self regulate easily, have problems communicating, experience great feelings of turmoil, usually feel out of sync and uneasy in their own skin.

Would I give the Doodle a magic pill to cure his autism? ABSOL-FREAKING-LUTELY.

Without question or hesitation. And it has nothing to do with loving him any less if he was autistic or "normal".

As a parent, you want what is best for your child...

Is autism in the best interest of children? Life is hard enough for "normal" people, but a person with special needs, inability to communicate and developmental delays has to work so much harder and for obvious reasons has much more frustration in a "normal" world. Autistic children have it harder in school and as adults functioning independently. Some autistic children are violent and hurt themselves and others and have no self control. Some autistic children don't know the feeling of love and can't stand human touch. They go their entire lives locked inside themselves. Some autistic children (and adults) need to be institutionalized. And I'm just scraping the surface here.

With autism comes health issues...I won't list them all, but if the Doodle's seizures are part of his autism and his coordination, speech and muscle tone and sleep would be normal if the autism was gone, I would give him the pretend pill. I want to fix him! I'd do anything to fix him! And I am in no way ashamed to say that. It doesn't make me any less of a mom to want my child to have a chance at life; to be able to go to college or fall in love and have children of his own if that is what he wants for himself.

But that's just me.

White Boy Can't Jump

But he can march

And bounce on his butt

And do some dancing tricks

And take a bow.

We got the Doodle a little trampoline today with a balance bar at the urging of his Physical Therapist. For some reason, he can't jump. So we're hoping that the little trampoline will build up some needed muscle tone in his legs and help him with coordination and strength. The Doodle still can't walk up and down the stairs with any kind of ease or confidence. And if you saw him run, well. That's all I can really say about that.

Like most challenges the Doodle is faced with, we have no idea the cause of his uncoordination.

Is it the autism? The seizures? The medication? Or something else we haven't discovered yet?

The Pink Elephant

"Misfortune shows those who are not really friends."
- Aristotle

Having a child with special needs I am often faced with reflecting on who my true friends are. Coincidentally, the invitations stopped rolling in around the same time as the diagnosis came in.

It is understandable and makes perfect sense. Having an autistic child, especially a non-verbal child in a helmet having seizures with bad behavior, tends to bring down the mood of most celebrations.

Jenny McCarthy says, "...when you get sick with a disease or cancer, people visit you and bring you soup...when you have a child with autism, people avoid you in grocery stores."

It could be my own insecure paranoia but taking the Doodle to a party is like showing up with a Pink Elephant (in the room)...except, I'm usually chasing my pink elephant around because he is out of control, stemming or OCDing and way over-stimulated and then no one is having fun. Especially me.

My pink elephant has a sixth sense. He knows exactly when and how to push the right buttons, yet knows I cannot react the same way to him as I can when we are at HOME. He knows that the "Time Out Swing" is no where in sight and takes that as a full opportunity to really act out. He can completely read my mood and he feeds off the rise in my blood pressure. I've left several parties in tears, asking myself why I bothered to go because it is a cruel reminder of how much my life has really changed. We're no longer normal; we're the entertainment.

It's easier to stay home. I've got the Jerry Seinfeld rolodex of excuses. And, sadly, it takes tragic and life-altering events in life to really see who your true friends are.

I get it about parties and not knowing what to say about the kid in the helmet or how awkward it might be to try to pretend not to notice, yet not be able to break the stare out of morbid curiosity. Why do I know? Because before I had a child with special needs, I was thatt clueless person. I was that person so very grateful to not have to deal with that. So please consider this post anything but righteous. It's just the way it is.

But what about reaching out to a friend who is having a hard time? Does my child with autism now define me? Is that all people see now when they look at me? I'm a package deal with my challenging 44 pound side-kick.

Besides the lack of invites, my phone isn't exactly ringing either. I'm going to take some responsibility in this because that was the intention of this Blog. I created this blog for people who wanted an update on the Doodle's seizure disorder and autism diagnosis because I was too tired and upset to talk about it all day long. I created this blog for selfish reasons, so that I did not have to talk to people and tell the same painful story over and over and over. It was my first step at sheltering myself from my "friends" and even family.

But the friends who talk about me and our situation behind my back because they are too cowardly to say things to me directly....the friend who happens to be a NURSE who never once reached out during our many hospital stays at the very hospital she worked in, the friend who was constantly putting her child who is the same age as the Doodle on the phone so that I could hear her speak in full sentences when my son can't speak just to make me feel badly. Those aren't friends and it took until now to realize that.

I do have a few true friends. I proudly count them on one hand minus three fingers.

Happiest

 

Besides changing the channels and eating Doritos the Doodle is happiest playing outside. Sometimes he plays like a true "normal" little boy might play and sometimes I forget that he's autistic. I forget that he can't speak. I forget that he has severe sensory issues. I forget that he's not potty trained and that he still drinks out of a bottle. I forget how difficult he can be. Then, every once in a while, I catch a glimpse of myself in the reflection of his shiny black helmet and it makes me remember...I have a very sick little boy with epilepsy; and I think to my self, who really cares about the autism? The autism is so secondary now. His health is what is really important, not his development or speech or behavior or quirks. I can live with and manage those. We will get by. It's the seizures I have the hardest time with.

When I look at this little man, I see a little boy with so much promise and potential and I remember how much he has taught me about acceptance.

Contributing to the Delequency (Edited)

...of our minor. Oh how I love it when the Doodle learns something new and takes an interest in something other than Doritos but then I ask ourselves...why?

Why did we teach him THAT? Have we learned nothing about living with autism?

Because when the Doodle learns something new, it's OCD time. Jim, oh my dear Jim, has really done it this time. He has taught the Doodle to operate the remote control for the TV. Now, we cannot watch any program, his or ours, without having to change the channel and press the pause button over and over and over and over. We haven't taken the remote away cold turkey. How could we? That would be just mean. Just look at that face, changing the channel makes him so happy. How can I take something from him that gives him such true pleasure that isn't really hurting anyone? It's just the TV for goodness sakes. I think to myself, self, I need to lighten up. But then I watch something come over him and he gets overstimulating and then no one is enjoying themselves anymore...especially Doodle Bug.

So we have to hide the remote now and while millions of other people across the world are partaking in the glory of the almighty TIVO and fast-forwarding through the commercials or pressing pause to get a snack or take a whiz...we cannot. We have to suffer through television like we did in the old days; pre-DVR.

Besides Jim, I like to blame those foolish British idiots nice looking award winning and talented Australian gentlemen from the Upside Down Show. The entire show they are telling the children to press the pause button and the rewind button and the right side up button--blah blah blah.

It is clear to me now why it is the Doodle's favorite show, it's all about the remote and controlling things.