How Do I Explain It to Her?

She's almost ten, and she doesn't understand. Why is she different? Why does she still love and need her stuffed animals? Why isn't she interested in boys, or Miley Cyrus or Ke$ha (shudder) or makeup or Abercrombie & Fitch? (not that I would buy her clothes there...ever!) Why is it so hard for her to read? Do math? Talk quietly?

Why do her cousins tease her for things she cannot control?

She's almost ten, and she doesn't understand. Why is it so hard for her to control her frustration, disappointment, anger? Why does she clam up when she gets really upset? Why do her words fail her? Why does she see a speech therapist, reading tutor and feel so "little" (her words,not mine).

She wants to be a big kid. She wants to do the things they do. Sleepovers, going to the movies with friends. After all, she's almost ten. She watches Nickelodeon and the Disney Channel, and though I explain until I am blue, blue, blue in the face that those kids are fictional, their life is not reality, she still aches. For what she doesn't have. Maybe won't ever have.

She's small. She still wears dresses almost always, and has since she was a toddler. It's just what she likes. But she wants to be older, and look her age. She needs help to brush her hair, hates to take a bath. Her self-care skills still need...coaxing.

She's almost ten, and she doesn't understand. Why autism? Why her?

I can't explain it to her. I wish I could. I am in my forties.

And I still don't understand.

Tina blogs here, and at Send Chocolate Now. Autism Sucks is her brainchild. Want to write? email her! autismsucksblog, just add gmail.com

Why Autism Sucks: Chocolate Chips, Cheap Wine and a Big Ball of Poop

When you cap off your night with two glasses of Merlot and a bunch or raw chocolate chip cookie dough, chances are the day has been rough.

Autism. Really. Sucks.

And my rose-tinted glasses are frequently cracked.

Some days, they simply cannot be found. And I don't even bother to look that hard.

Why did autism suck today, you might ask????

Well, there were the typical, every-day reasons. My non-verbal, six-year-old son screamed in frustration about something that still is a mystery to me. He carried out his current stim with just as much intensity as he did the day before. I literally had to sit on him in order to cut his toenails.

And, for some reason, for the first time in, well, a long time, he pooped in his pants.

His swimsuit, to be exact.

At a city pool.

Thank GOODNESS (I won't say "God" because I am not in the mood to bring God into any of this), he was OUT OF THE POOL. And I noticed it as soon as it happened./

But when the "bright side" of things is that you didn't have to tell a life guard to clear the pool on account of your six-year-old's poop ...... well, is there REALLY much of a bright side?

Oh, and let me not forget, I was at that city pool with my autistic son, and my four-year-old daughter, and well, NOBODY.

My son has done great taking himself to the potty at home since we really hit the potty-training business just after his fourth birthday. And I am so glad. But, STILL, STILL, I can't count on him to communicate the need to go when we are out in public.

And the kid is a pee fountain.

I take him to pee more frequently than a chain-smoker lights up.

We had been doing so well with not having accidents, until recently ....

And when the accidents start, they seem to come in big numbers.

But, REALLY, POOP???? And at a pool????

I am Ms. Automatic-pilot when there is such a situation. I am not good at many things, but if there is an autistic child with a poop crisis in public, I am your girl.

So, when I saw the face, and confirmed the existence of a wet, messy poop, I just went into action.

I took both kids to the bathroom immediately and got my son to the potty where he finished his business. I checked out the swimsuit and realized it was NOT worth saving. Good-bye new swim trunks. I cleaned up his messy bottom and took him straight to the shower, where I scrubbed the both of us down with soap as if we were about to perform surgery. I went back to the bathroom stall and cleaned up the toilet. And, because all of the spare clothes for my son were in the car a good distance away, I let him wear my tee-shirt. (I had my swimsuit on, people, so don't get any ideas).

It was all a pain. A great big pain. Shouldn't we be well past this?

I certainly let my son know just how unhappy I was with the circumstances. He wasn't very happy either, my poor boy.

It makes me frustrated.

And it makes me sad.

Sad for me, because, yes, I sometimes allow myself a bit of self-pity. I had no idea this would be what I was in for when I first learned I was pregnant.

Sad for my son, because, after all, he deserves the most sympathy. He is the one who struggles to understand this world, and without the benefit of ANY language.

And sad for my daughter, who sat through this whole ordeal on a bench in the bathroom by herself.

She is plenty old enough to understand that her brother should not be having these problems.

She is sophisticated enough to realize that her mother is S-T-R-E-S-S-E-D. And, that, in turn, brings stress to her life. She actually worries about me. My four-year-old daughter worries about me.

Oh, lord, just pile it on.

I am so very, very sad for my daughter because there are many moments in her life, just like this one today, where she sits or stands alone, waiting .... just waiting.

Waiting for me to tend to her brother's problem, need or outburst.

Waiting for me to prompt whatever form of communication I can get from him, even if it is just eye-contact, a nod of the head and a "yeah."

Waiting for me to finish working with him -- because I feel so much guilt if I don't spend at least some time trying to help him accomplish something, even if it is as simple as focusing on a puzzle.

It simply is not fair. There should be someone else on the scene. Someone focusing on her. Or sharing the responsibility of focusing on her brother so that I can sometimes get to focus on her.

Oh, how I would love to just focus on her.

But, even when I get a moment to do so, I am so tired.

So very, very tired.

I am not what my kids deserve.

Either one of them.

And I just don't know if I ever will be.

I have my doubts.

But, man, can I clean up the poop in a crisis.

Is there a career in that, by the way, because I sure could use a job.

Leah is a single mom of two children, one who has autism and is non-verbal. She writes at fruity pebbles for dinner.

The Road Less Travelled 1 - The Tale of a Boy & his Journey into Autismness

Part 1:

When our first child was born, we were the same as most new parents: filled with love, hope, joy and dreams for our son. Little did we know that God had planned a very different journey for us. Far from the smooth highway we veered onto the rugged back roads and broken dusty trails. The first of the section is fact. The second part, in blue italics, contains the less rational emotional journey.

The Early Years Birth to Three Years of Age:

• High Blood Pressure last trimester - medically controlled by Labetalol. My mother-in-law suffers a cerebral haemorrhage when I am thirty weeks pregnant. We travel interstate to see her and land smack bang into family politics, making life nasty and hellish. On our return, my previously perfect blood pressure has skyrocketed through the roof. Rushed off to BP specialist and medicated. Weekly visits. Informed it is MY BP, not pre-eclampsia.
• Admitted seven days overdue, blood pressure dangerously high again. Controlled, induced ten days over. Twenty-four hour labour, attempted forceps, foetal distress, meconium passed not inhaled, emergency caesarean section. Blue baby. Apgar four at birth, nine at five minutes. I cope, after all that is what women do. I have run the gauntlet and survived, and so I cope. And thank God for a brilliant obstetrician without whom we both would not have survived.
• Slightly jaundiced baby. All well within 24 hours. He is cute, but I am waiting for this overwhelming rush of maternal love. It finally kicks in around Day 3, about the same time as my milk. And the tears. Then I get mastitis. Twice. Gotta love this gig.
• Early childhood nurse picks up torticollus and craniosynostosis (or cranial stenosis as it was back then). Turns out he was wedged like a cork in my pelvis the last trimester which resulted in weakened muscles on one side of his neck, tightened on the other. Craniosynostosis/Craniostenosis is when premature synostosis of cranial bone sutures occurs, normal head growth is inhibited. Various characteristic anomalies of the head develop as a result, and in extreme cases, the development of the brain and sensory organs is hindered. Google is not my friend. My baby may have to have the sutures in his skull cut open. His forehead is pushed forward on the left and his skull is flattened at the rear. His brain is being crowded. He screams in terror when they lock his head into position to take an x-ray. I cry.
• By twelve months old, (when I am two months pregnant) we are given the all clear. Physiotherapy, posturing, tummy time and sleeping position regulating has strengthened his neck muscles, allowed the pressure to be relieved on the flattened plate of his skull, and the bones to realign. It is pure luck that the plates have not fused. We rejoice that our gorgeous boy does not need surgery on his delicate skull. I did not know how I was going to handle it if they had said "surgery". All the tears when we made him lie on the side he was not comfortable in, all the battles when he tried to roll to the other flat side were worth it. He is going to be okay.
• He starts saying words quite young. The ECN does not believe he is saying "Mama" at four months, she says he is babbling "Mumumumumumu". Until he does it in front of her. Until he deliberately and clearly calls Mama when I leave the room. Looks for me. Waits. Then yells quite annoyed: "MAMA!" She also denies the night terrors in a child under 12 months old. So we video them. Again she admits her mistake. By twelve months, he has over thirteen words including a favourite: cheesestick. Sentences are being formed. He is a joy, and apparently quite forward in his speech according to the ECN. But he is lagging in the physical development side, but we are told not to worry.We can only stop the terrors by latching him onto the breast. I feed to thirteen months when I am nearly through my first trimester and sick as a dog.
• He is a very Mum focused child. Clingy, but a happy, laughing boy with it. Sleeps through except for night terrors sometimes. Captivates many with his engaging smile. Loves blowing raspberries to strange women over Dad's shoulder. He has the best laugh and an infectious giggle. Hubbie could have had lots of phone numbers with this one as his wingman. So engaging, he loves people. Had the whole plane playing peek-a -boo on one of our flights north. I think he is used to being with me, which is why he cries on the rare times he is not.
• Commando crawls from 5 months, crawls on knees 11 months, finally walks 17 months. Finally! Thought I would be carrying two babies around. ECN says the lateness is nothing to worry about.
• Loves being a big brother. Constantly monitoring adventurous Boy 2. He loves his baby. Sits and chats whilst I feed Boy 2. Never a hint of jealousy, none of the anger or tantrums we were told to expect. Is very protective of his little brother.
• Sensitive little man, is upset if people yell or argue. Does not like loud noises but is not exposed to them often.
• At almost three he begins to change. Coincidentally it occurs with his MMR injection. He becomes extremely attached to me screaming whilst I shower. His speech changes to an  indistinct, slurred, monotone. Obsessions come out and eye contact is avoided. Meltdowns run for up to two hours. My child vanishes and a new one is revealed. The doctor later says it is at this age that these signs emerge. I am lost in a fog of grief. After a long battle my Dad has lost his fight with cancer. I am not mothering my children, I am merely managing. The baby sitter mentions autism. I tell her to mind her own business, silly little know it all. My son is nothing like Rainman.  

This is the beginning of our journey, in my heart I knew something was wrong but could not face it. As my grief grew more manageable, I started look at the issues. My first concern was his speech problems, and the unexplained changes. It was to be my starting point.



  also blogs at Meaninless Meandering From a Madmother. This entry is the first in a series telling of our journey.