Autism Questions and Answers

So the other night I had the twins with me in the car, when I went to pick up sausage orders that needed to be delivered for a fundraiser that Jake's dance school had put together. I left the boys in the backseat, while I loaded up the trunk and chatted for a minute with some of the other moms who were doing the same. A little girl (about 4 years old) who was also waiting for her chatty mom, nodded over to Owen and Will and asked me "what are they doing in there?". I told her that the boys were watching videos on their iPads/tablets. She (very jealously) asked if the boys had their very own iPads, to which I said 'yes'. But before she could turn to her mom and before her mom could give me the stink-eye for having given her daughter a reason to beg for one, I decided to explain to this little girl, that the boys had autism and they used their iPads for more than just watching movies.

Once you go there, you have to commit. And brace yourself. When a child learns that there is something different about my children, you can pretty much guarantee that the questions will be peppered like a machine gun.

- what do they use the iPads for?
- what do you mean they can't talk?
- well how do they tell each other things?
- that means they can't tell each other their secrets! (horrified)
- why does Owen look scared?
- why would he be nervous because I'm looking at him?
- why does he gets scared of people he doesn't know?
- so he can't talk AND he doesn't understand all words?
- well how do they play if they can't talk?

...and so it goes.

I welcome the questions now. Six or seven years ago, I may have hid from them. It is still painful sometimes to talk about the boys' challenges, because I feel disloyal to them somehow. Like I'm betraying them by pointing out their differences, particularly to another child. If the conversation lasts long enough for me to get a word in, I will follow up my Q&A Period with a bragging session. I especially like to note the look of shock when I tell people that Will can read and write, or that Owen, however quiet he may appear - can communicate using proloquo2go and some sign. He's really smart!

However uncomfortable it makes me feel and lord knows, I don't even know what the twins are thinking when they're hearing us have these conversations about them, answering their questions means I am raising awareness and dispelling ignorant assumptions. Hopefully I might be normalizing autism so that that child won't think twice about seeing another child with autism in her class and might even seek him out as a friend.

My openness isn't restricted to kids. Grown-ups -- ask me questions. I'd rather you ask, than assume and not be right. Just be considerate of the fact that these are my kids. And how might you feel if I asked you similar personal questions about your own children? I can usually tell when I meet adults, that they want to ask questions, but are afraid to. So I usually try and initiate the conversation first to break the awkward ice. I can also usually tell which adults are asking out of compassion or seeking understanding, and which are asking for entertainment (for lack of a better word). Sometimes it feels like these people are asking for the answers so that they can complete an exam, as if my kids are science experiment lab rats. We're talking about my children here. Please have some sensitivity or at least some common sense.

I may have posted this on the blog before, but it's worth it. These are a couple of video clips I found that you can show to your kids. They aren't perfect and neither do they represent all kids on the Spectrum.



And as explained by my hero, Temple Grandin:




Ask away!

Disappearing on World Autism Awareness Day

Our family didn't need to see a Facebook event reminder, or a newspaper headline to remember that today was Autism Awareness Day. It would be fair to say that we are made aware of autism on a daily basis. It would also be fair to say that we make other people aware of it regularly. This could never be more true than it was today.

Our lovely, usually passive, often lazy, reliably predictable seven year old child, Owen, decided to remind all of us just how much autism has affected our lives. It hasn't just seeped into our lives quietly and  imperceptibly. It slammed into us head on today so that we were forced to stand up and take notice.

Jonathan gave me the day to work down in the basement office. I was working on a scrapbooking project for the twins' upcoming school fundraising gala. I was grateful to be allowed a chunk of a day where I could close the door and just get stuff done. Without interruptions. Without having to worry that if I looked away, someone might get into the food cupboards, or make a humongous mess, or have a toilet training accident, or try to ride our blind and deaf pug like she's a horse.

Jake and Will asked to have a bath in the middle of the afternoon (a favourite pastime in our home for the boys), so Jonathan left Owen watching a Sesame St. video in the main-floor family room while he ran upstairs to run the bath. How long does it take to turn the faucet on, plug the plunger into the drain and lay out a couple of towels?

Rewind an hour or two. Jake had been playing outside on the driveway.

Why is this important? It shouldn't be. It wouldn't be in anyone else's house. We've got a nine year old who, like other kids his age, is allowed to come in and out of the front door without having to make a grand announcement about it to his parents. But in THIS house, we have a nine year old who is fiercely proud of this bit of independence, but we also have two seven year old little boys who are likely envious of their big brother's free coming and going's, but they aren't allowed to do the same.

Why?

Because they have autism. Because they don't understand the safety rules. Because their parents are paranoid that because they are non-verbal and trusting, they might wander off with a stranger. Because they are non-verbal, we can't ask them if they understand the rules and the guidelines and the limits to where they can go and if they'll come back. Because their behaviour is unpredictable, we don't know if they might chase a car that drives by, or run up to a stranger to sniff their clothes or touch their shiny hair or push them off their bike so they can have a turn.

Because of this, because their busy parents can't hang out in the playground and the driveway all day, the twins were indoors on a day where they probably wished they weren't. And Jake got to play outside. And when Jake came inside and settled in, he didn't make a grand announcement about it.

And we didn't latch the door after he came in.

As simple as that. The door wasn't latched.

Back to my question. How long does it take to turn the faucet on, plug the plunger into the drain and lay out a couple of towels? -Long enough for Owen to seize the opportunity, put on his light blue rubber boots and make a run for it.

The $110 a month security service we installed after Will's first runaway mission a few years ago didn't help us today. Because it wasn't activated. You don't activate an alarm during the day when you are in and out every 20 minutes when it's so nice outside. The chime that went off on the main floor to alert us of the door's opening, wasn't heard by myself in the basement office, or by Jonathan who was hearing the rushing water from the tap upstairs. In the less than five minutes for Jonathan to come back downstairs and see the front door wide open, Owen was gone.

Sprinting downstairs to pop his head into the office to see if Owen was with me, I learned Owen had run. The playground five doors down was my first thought and Jonathan's too. Off he went running. I sprinted up to the bath and dragged Jake and Will out of it, begging Jake to hurry so he could get on his bike and start searching the street. Will wasn't happy to leave the tub and I had to drag him outside to the driveway, where I saw the neighbours running along the sidewalk, peeking into backyards and alerting others to join in their search. With no luck at the playground, Jonathan took off into the provincial park, headed for the Bow River. My heart sank watching him go and I started to shake.

Owen has never run. It has always been Will we've had to keep an eagle eye on. Owen whines after having to walk more than 10 steps. He begs for piggy-backs and opts for the wagon. It's never Owen. This is bad.

I got Will into the van to begin my own search. Jonathan came back through the gates to the park with his arms up in the air, shaking his head no. Oh my God. If he's not in the Park and not at the playground, where the hell is he??? God forgive me. I thought, if he's not at the riverbed, it's because he's already floated down the Bow. Black Fear.

My neighbour told me I needed to call 911 before going off on my own search. I did and I heard a voice tell me that I had to wait because operators were busy on other calls. Are you kidding me?!?! Police were dispatched, they kept me on the line, asked me to stay put. Did I know what Owen was wearing? -Oh God, I couldn't remember what shirt he had on. I'm a terrible parent. I remember telling her that he was toilet training and we had had to change his clothes several times that day and I couldn't remember. Did he have a buddy who's house he probably went to? -No. He has no friends on the street. I started to bawl. I was crying in fear that Owen wouldn't live to have a true friend. She asked if I had other children. -Yes, he is a twin to a brother who also has autism and a younger brother to Jake. I heard her gasp, then try to cover up her surprise by saying that we have our hands full and she can tell that we are wonderful parents. Ya. Really wonderful. We don't latch doors and our kids disappear right under our noses. She promised me that several cars were patrolling and searching for Owen. That they were usually successful and found missing children very quickly. Usually.

Fifteen minutes, 30, I don't know how long. It felt like a lifetime. The police officer told me that they had received a call and they believe they have found a boy who fit our description. I remember hanging on her every word, waiting for her to tell me he was okay. She asked me to hang in there with her while she waited for more information. I waited. I was rewarded for my patience. "A woman phoned police to let us know that she picked up a little boy who fits Owen's description. We're sending police to meet her and they'll let us know shortly if it's him."

It was. Owen was found about one and a quarter miles away. The kid who hates to walk. In his light blue rubber boots. He was seen crossing a four lane busy road by a passerby, who fortunately, was not a psycho-sicko and who had previous experience working with kids with autism. She pulled over, picked him up and waited for the police. God Bless Her. I hope she knows we are eternally grateful. I also hope she knows that the best way to get rid of the stink is to just roll down the windows. Our toilet-training Owen pooped in her car. Oops.

I squeezed him so hard I think I scared him enough to not run ever again. I lectured him and told him that he can't ever scare Mommy and Daddy like that again. He shook his head no, as if to say that he should never run away again, but he had a smirky grin that told me who knew exactly what worry he caused and he seemed quite pleased with himself.

He is now sound asleep in his bed, curled up like a turtle with his comforter over his head. He will most likely sleep soundly, with only memories of an adventure dancing his head. He won't realize that his parents are in bed on the other side of his wall. Wide awake and trying to distract themselves from allowing their minds to replay the day's nightmare. Reminded yet again that if you try and pretend that you are a normal family, doing normal things, autism will remind you of why you cannot. You must always remain vigilant and alert. You must have three sets of eyes, three sets of ears, twenty sets of hands and quick feet. You must have loads of money to pay for the expenses of GPS bracelets, security systems, reinforced locks and doors, special windows that don't open all the way, the salary of extra aides to help shadow your children's every move and the therapy to teach safety, even if it takes 5 years of repetition teaching. You must have the patience of a saint, the energy to exceed that of your children and the courage to take on every challenge. You must have the ability to put yourself fourth and use your mind-over-body ability to suppress the need to pee, shower, or eat -because you're not allowed to do these things, lest you take your eyes off of your child.

I suppose that besides the lessons in safety that were reinforced today, autism also delivered us a gift. A reminder to be grateful for the boys that we have. For every moment that we have with them. Because as I tucked them in tonight, the thought that I may not have had my child to put to bed this night, was not far from my mind.

We are very aware.

Light It Up Blue

It's a big day. 

TO LIGHT IT UP BLUE
(taken from http://www.lightitupblue.org/)



On the night of April 1, prominent buildings across North America and the world including the Empire State Building in New York City and the CN Tower in Toronto, Canada will be lit up blue to raise awareness for autism and to commemorate World Autism Awareness Day on Friday, April 2.

And we’re aiming to light the world blue, too – city by city, town by town – by taking action to raise awareness about autism in our communities.
Other things you can do to Light It Up Blue

* Wear your Autism Speaks puzzle piece pin every day throughout the month of April, and tell people about autism if they ask about it.
* Change your Facebook profile picture to the Light It Up Blue logo and tag at least 10 of your friends.
* Post on your blog about how you are “lighting it up blue” to raise autism awareness.
* Add the Light It Up Blue logo to your e-mail signature … and type your e-mails in blue!
* On April 2 wear blue clothing and ask your co-workers, schools and friends to wear blue too. Take pictures and add them to our Flickr gallery.
* Bake puzzle piece shaped cookies and frost them with blue icing, then bring them to your school, work or place of worship to raise autism awareness.

For every family who tomorrow, may learn that their child is one out of the 110 children who will receive the diagnosis of autism, for every child who faces an unknown future in a world that has not yet figured out how to support them, for every adult on the Spectrum who struggles with acceptance, for every person who still uses the word Retarded and thinks that it's an acceptable word to describe people with autism, for every employer who still doesn't see the potential in hiring a person who has autism, for every professional who is challenged with the task of telling a parent that they suspect their child has autism, for all of these people and all the other zillions who are indirectly affected, please show your support of the Light It Up Blue campaign and help us to Shine a Light on Autism. Raising Autism Awareness is not just to show support, but an opportunity to eradicate ignorance.

Light It Up Blue

Note: If you live in Canada, on Thursday, April 1st, 2010 The Globe and Mail
will publish a special information feature for Autism Speaks Canada.
Please try and take a look if you can. If not, please visit http://www.autismspeaks.ca/ on Thursday if you missed the paper version.

It could have been our story

I wrote this little message to my friends on Facebook, on June 4, 2007:

I'm posting this to 'vent'. I've got a blog to do this stuff, but right now this seems easier.

We have had a really scary weekend. As our friends know, our 4 yr old twins have autism. There's always something new to worry about with our boys. With Will, one day it might be that he refuses to walk because he needs/wants to line his toes up together and won't take a step, the next day he may decide that he's set rules up around food and he won't take a bite. This weekend he thought it would be fun to run away to our nearby provincial park & the Bow River.

I'll leave out the details, but you don't have to be a parent to know how terrifying this was for us. Jonathan was in the washroom, home alone watching the kids yesterday when Will made a run for it out the front door. By the time Jonathan discovered he wasn't in the house, he had to leave the other two boys on their own so that he could run & search. He made it all the way to the Bow River and fortunately, a group of women stopped him before he could go right in. They contacted the police and Jonathan had some explaining to do when he got there. Will was oblivious to all of the excitement and his only scars were the smattering of mosquito bites he got from being in the bush.

We've got an alarm system that was installed for this very reason. Sometimes Will gets up while we're sleeping and we don't hear him and he wreaks havoc throughout the house. He's got a chime that goes off when his bedroom door opens so that we hear that he's awake and all of the exterior doors have an alarm when they are opened as well. But it's summertime and our windows are all open to keep us cooled in the heat and the birds are louder than the alarm so we are not hearing it.

We woke up this morning to find no Will in his bedroom. No Will anywhere and the front door wide open. This time we think he only had five minutes on us and Jonathan sprinted into the Park while I drove the neighbourhood, looking for him. Lucky for us some cyclists on their way to work on the paths along the River, found him and stopped him.

In only his PJ bottoms, a non-verbal little boy running in bare feet. He's safe and already trying to pry open the lock on the back door to get into the backyard as I sit here writing this. New locks are out on the table, ready to be drilled into the doors and a call to the security company is on today's agenda to figure out how to make our alarms louder.

The worry never ends.

When it was written, Will had yet to come his closest at causing this family a lifetime of heartache. He succeeded in reaching the rushing river and jumped in, lured by his fear and the rush of adrenaline he thrives off of. Again, someone was watching over him (and us) and a man walking by saw him go in and he jumped in after him.

I don't tell this story without emotion or off-handedly. It remains a reality in our life and it rears its terrifying head every now and then when we least expect it and become nonchalant. It is the fear that makes my blood run cold and the nightmare that wakes me, while I'm left with the chills, remembering how I just jumped in a river and came out without my little boy in my arms.

My thoughts have been preoccupied the past two days, as the story hit the news of a missing 7 year old autistic boy who went missing in Nova Scotia, without a winter coat, after wandering off into the woods, following his dog. James Delorey went missing Saturday afternoon and although it was happening on the other side of Canada, I'm sure anyone who has a connection to someone who has autism, was glued to the story as I was.

He could have been Will. He could have been Owen.

He's non-verbal. He doesn't respond to his name. Lost.

His mother must have lived in terror. How can you get through the night knowing your baby is out there in the woods in the dark. In the freezing winter cold.

When we hear of stories like this, it's almost automatic to create a detachment so that you can 'cope'. If you don't learn the details, you don't have to feel bad. If you listen to the facts and turn your brain off to the imaginings of how the players in the story are feeling, then you don't have to feel anything at all other than interest. I try. I try so hard to not care. To not pay attention. To not dwell on the details. To leave the news in the newspaper and walk away unaffected. But that's not who I am. I'm a try their shoes on kinda person. Sometimes I wish it weren't so, but it is.

So when I heard about James, I immediately ached for his family and for him. I imagined the worst, but I hoped for the best. I joined the facebook group created to share information and coordinate the prayers for his safe return.

Today our prayers were answered and James has been found. His dog, Chance, came out of the woods this morning and returned home. Rescuers were able to follow his tracks that led to an unconscious and severely hypothermic James. Barely alive, but alive. He is currently in hospital, in critical condition. 

I watched his pictures flash across the screen and had the vague thought that he had that sweet look that my boys have, that many children with autism seem to have. A look that almost seemed familiar to me. 

Then an image of James flashed of him wearing a graduation cap.

James

It reminded me of Owen's graduation cap that he wore in August when he graduated from his school program:

Take a closer look.

Owen's therapist came to our house tonight for a session, quite shaken up. It seems Owen was James' classmate this year, here in Calgary. Before his family moved back East to Cape Breton, Nova Scotia.

It could have been our story. This one's too close to home.

Please, please, please say a prayer for James and his family. And for all families who live with these truly founded fears. Pray James' story doesn't repeat itself for anyone else and that he comes out of this healthy.

For more on this story: click here.

Take a Peek Through Our Window

This morning I was up in my bathroom, brushing my teeth. I looked around my bedroom and thought to myself, "I've got a kick-ass bedroom". We've got the master bedroom of the house and it really is awesome. It's huge and takes up the whole depth of the house. It's blue.. a dusty blue that I love. We've got the most comfy king size bed that hubby invested in last year after our sleeping in a smaller creaky mattress that we'd had for 15 years. We've got cable tv on a decent sized tv (but I'd appreciate it if someone would buy a remote for it) and we've got a massive walk-in his and her closet. A huge bathroom with his and her sinks, a soaker tub, decent shower and even a built-in separate toilet with a door so I can brush my teeth without seeing hubby reading his sports mag on the throne. I even have the best chaise longue that sits in my window.

So why am I bragging about my bedroom? There's a flip-side to all of this. I NEVER GET TO USE IT! This isn't going to turn into an x-rated post, don't worry. I just realized how many little things make my life different than the lives of my friends and while brushing my teeth, I had a new reminder.

- I spend no time in my bedroom or anywhere upstairs, unless I'm cleaning, because I need to shadow the twins at all times. I can't shower unless the kids are asleep, in case they roam the house, break into the cupboards, or make a run for it. We have to sleep with the bedroom door (and one ear) open throughout the night in case Will decides to take a run to the river. In other words, it's like living in the newborn stage six and a half years later.

- we had to install a security alarm system in our home, not to prevent burglars from coming IN, but to keep Will from running out. I can't remember if I've blogged about it before or not, but we have gone through some pretty terrifying experiences with our little runaway. One time Will woke up before the rest of us and left the house in his pyjamas, running all the way to the Bow River (it isn't a teeny stream, either).

Fortunately some guys cycling on their way to work caught him before he got in. Another time, he ran away right under our noses and this time he made it IN the river. A stranger walking by happened to see him go in and he jumped in afterwards. So scary. Hence the alarm that now goes off everytime the exterior doors AND Will's bedroom door is opened or closed.

- I have a child who hasn't eaten solid food in two years. Prior to that, Owen's foods were self-limited already to just a handful of different items. But since all foods stopped, he has been on a special, gluten-casein free meal supplement drink. It doesn't come cheap. Neither do his diapers and pull-ups and wipes. It's an expensive thing, having kids. But I do realize I'm preaching to the choir here... sorry..

- There are things that I think many other families take for granted. It can definitely be a struggle to pack up the kids and go grab groceries. It can be embarrassing if your kid cries in a store. But when you've got twins who are both too big to put in the cart and who both take off and bolt in opposite directions, shopping is not an option. Owen and Will are both hyper-sensitive to loud noises and we can't pinpoint what acoustic environments can send them into a melt-down tantrum. Owen drops to the floor into a turtle position, shoulders up and arms covering his head and specifically, his ears.

OR he does the opposite; screams and cries and crumples to the floor in dead weight. If Owen drops to the floor, Murphy's Law can guarantee that Will will likely take this opportunity to bolt. Trips to the grocery store are not an embarrassing inconvenience, but a safety concern. I remember an occasion where hubby was out of town and it was in the heat of the summer. The kids were practically living in the backyard, so they could escape the heat and play on the waterslide that we had set up. The city was doing some cable work in our backyard and had upset several wasps' nests. I am allergic and was unaware if the boys had inherited my allergy, so was obviously in a panic. I was desperate to get to the store to buy some wasp killer, but knew I couldn't go with the twins. It was the most frustrating feeling to know that I couldn't run a simple errand. This little rant didn't even include the fact that Owen refuses to set foot in a public washroom (this one many of us can relate to as well, I'm sure). Really limits the length of time we can be out in public if we can't use the bathroom.

- Will's OCD can drive a family crazy. When Willy's going through a phase of high anxiety and sometimes this can last for months, his Obsessive Compulsive Disorder can get out of control. He can be playing in the other side of the house and hear the television or radio turn on and he'll sprint through the house to scream for it to be turned off. If he hears you say the word "to/too/two" he will run and plant himself in your face and insist that you repeat the word back to him. Again. and Again. and Again. and Again... If you turn the lights off, he wants them off. If you throw his comforter across his bed, he wants it left folded a specific way on the footrest. He refuses to get out of the tub until the last drop of water has gone down the drain. He won't let you wear short-sleeved shirts in winter, because he'll tug at the sleeves to pull them down to your wrists. If you typically wear your hair down, he'll try to pull out your hair elastic to make it right. He carries around armfuls of stuffed animals and if they are wearing t-shirts he brings them to you to take them off.

Then put them on. Then take them off. Then put them on. Then off... Any effort made to stop the behaviour in its tracks or not fulfill his irrational request will guarantee a tantrum that will not stop or disappear. Will can be put to bed after one of these episodes and wake up at 4am, immediately searching for the stuffie's t-shirt, or standing above your bed asking you to say the word "two". He doesn't forget.

- Owen's latest stim: ripping and eating paper. His target: every dvd and cd insert he can get his hands on and every book or photograph he can find. This has meant that my library room has become Owen's favourite place to be. You can shadow a six and a half year old as much as possible, but they always find a way to evade you. The result is the destruction of at least 60 of my books and countless photographs. I can't begin to tell you how devastating this is to me, but I am certainly grateful for digital photography. I'm not even mentioning the damage he has done to Jake's room and his bookshelves. It's difficult as the grown-up to not get angry at the situation, but how can you expect an eight year old to be understanding when his brother has destroyed his dvd's and books.

For the record, we are continuously working on teaching the boys the skills they need to tackle each of these issues. But this is just a taste of the extraordinary little quirks that you'll be witness to if you look in our window. I don't tell you this to whine, as much as to explain why we might be a little more harried than the average parent, or unable to come to the phone, or broke because of the extraordinary expenses, or on edge because we're exhausted from the constant battle, or we have no drink to offer a guest because we couldn't get to the store. Have a little compassion for the people around you, because you never know what's going on behind the curtains unless you peek through their windows.

Gluten-Casein Free Diet Explanation

I have avoided this blog post for a long time because I have always found it so difficult to explain. Before I continue, I must preface it by saying that I am not one of those autism moms that insist that it is going to work for every person with autism.

We were at our wits' end a year and a half ago. Owen had quit eating any and all solid food and his pediatrician had put him on Pediasure as a meal replacement. His body was covered in eczema and he had dark circles under his eyes. Will was a crazy man. His hyperactivity was at an all-time high, he hadn't slept through the night since he was born, his tantrums were out of this world and his focus was non-existent. We had been going through a few months of trialing meds and were currently using Ritalin (which I hated with every fibre of my being, not to mention how he must have felt on it). Will had an absolute addiction to carbs and had since he was born, and Owen could survive entirely on milk. Both boys would often get flaming red cheeks and ears following different foods, though we could never pinpoint the cause.

We thought we would try the diet and see what would happen. For Owen, we switched from Pediasure (dairy-based) to a rice-based meal replacement ($$$). Within a couple of days we saw the physical changes in his body; the eczema cleared up and so did the dark circles. He became sharper and more alert, losing the autistic "fog" he seemed to have (lost in his own world). Will became a different kid, or shall I say the best version of himself. Within two days we realized he had to be immediately taken off Ritalin. The hyperactivity disappeared; he sat beside us on the couch to watch tv- he had never sat to do anything before! (leisure-related). He slept through the night. The second night, the third night.. and we never looked back. He virtually toilet trained himself within the next month. He laughed. He started talking.

Did I ever tell you the story of my random dinner with the unforgettable Temple Grandin?



I'll have to save the story for another day, but I will say that it was, for me, like hanging out with Ghandi. She is brilliant. This woman holds a PhD and what I found so interesting, was her response when I asked her what she thought about the Gluten/Casein-Free Diet for people with autism. She told me that when science cannot support a method of treatment or intervention, she launches into her own interview with parents that she's met all over the world at various autism conferences and such. If she can find three people who can satisfy her science brain by answering her very tough questions, then she's convinced it's worth a try. As far as GFCF is concerned, she says she's interviewed hundreds who have succeeded. "It can't do any harm to try and I think it would be stupid not to". Her words, not mine.

I stumbled across a wonderful blog called Pray for Nathan Dorje. Nathan was born with a genetic mutation that caused a brain malformation called severe holoprosencephaly and was later diagnosed additionally with hydrocephalus. It wasn't expected that Nathan would survive, and if he did, he would likely be a vegetable and not have a meaningful life. A few years later and Nathan has so far proved them wrong, though he still faces many challenges. His prognosis is currently uncertain, but in the meantime, his family rejoices in their little boy and they blog to share his story.

His mother, Marcela posted her explanation of the GFCF Diet. I thought it was a wonderfully concise summary of what I could not explain myself.

This is a very extensive topic and requires a lot of education so I thought maybe I’d share a little bit about how we came to understand the relationship between health, development, and diet.

About a year ago I picked up Jenny McCartney’s book about her autistic son. She talks about curing autism with diet and she made clear correlations between the gut and the brain. I’ll try to simplify, but in a nutshell, the proteins in milk and wheat are quite large. When the milk/wheat is digested, it breaks down into smaller components, and the peptides that you get for them are very large. These large peptides have a tendency to perforate tiny holes in the intestines, causing something called “leaky gut”. Through these tiny holes, toxins, peptides, and other elements escape into the bloodstream. The immune system sees them as “offenders” as they are ‘out of context’ – they’re supposed to be in the digestive tract, not floating around in the blood stream. So the immunoglobulins (IgG) attack those substances, causing an allergic reaction. This allergic reaction releases histamine, which is a neurotransmitter that prevents the creation of other neurotransmitters including dopamine and serotonin, which are essential for proper brain development.

Another thing that happens is some of those peptides travel to the brain and in the brain they function like an opiate (like the drug opium) causing a hazy, foggy feeling that prevents proper brain processing and interaction (like being drugged).

Also, if there is constant inflammation, the immune system is always in overdrive, which in and of itself has serious consequences. Eventually they become immuno-suppresed, which leads to other problems.

Also, substances like milk and wheat feed fungus like candida, which releases a nasty toxin into the bloodstream.

I am trying to keep it simple so in a nutshell, wheat and milk are very difficult to process, even for healthy people, and can wreak havoc on children that already have compromised central nervous systems.

There are many books / studies talking about the connection between the gut and the brain. Without a heatlhy gut the brain is functioning at a much lower rate. That was my next step. Even though Nathan has CP, not autism, I made the connection between “compromised nervous system” and gut and a light went off in my head.

In the autism world they recommend the Gluten Free Casein Free Diet (free of milk and wheat). That seemed like my next logical step as they see miraculous recoveries in children with autism using this diet. Even though the symptoms in autism and CP are quite different, they are both CNS disorders so I figured that it was a good connection.

We went cold turkey. One day Nathan was eating cheese, chocolate, milk, and whatever we wanted. The next day he couldn’t have any of it. He had a rough couple of days but we stuck to it and on his 4th day he was okay with the new diet.

We cook everything from scratch. We don’t use anything with preservatives, or anything that may contain hidden traces of milk or wheat. Breakfast tends to be GFCF cereal (with rice milk) or GFCF pancakes (these are sold pre-mixed at health food stores). Lunch is usually vegetables, a grain like brown rice, quinoa, or millet, and a protein (fish, chicken or beef). We buy everything organic for him. Dinner is usually something similar to lunch. He gets 2 snacks which are usually fruit, or carrots, or millet with avocado, or rice cakes, or oatmeal. Nathan can’t chew well so everything is pureed.

The first 3 months were tough because he was detoxing. He was sick a lot. But then we added some of the same supplements used in the autism world (B vitamins, multi-vitamins, etc) and his immune system recovered. Starting Feb 09, Nathan has only been sick twice for a couple of days, he has much more energy, he is more connected, he understands more, he is trying to do new things, he looks rosy and radiates health, he is stronger. Just a couple of weeks ago I was able to see the true power of the diet. We had to break the diet because we are in a foreign country and it took us a little while to figure things out. So for 2 days he was allowed milk and wheat. On the 3rd day Nathan was pale, spacey, very low energy, and irritable. I could see instantly the poor effect these foods had in him. We want back to the diet and after 4 days of detoxing he was back to being connected, healthy, and happy again.

I cannot recommend cutting out milk and wheat enough, our kids have enough going on and don’t need more obstacles to their development.

If you are interested in hearing more about the controversy, here is a decent article that sums it up nicely: CLICK HERE.

Three to four months ago, we re-introduced dairy back in to Will's diet and have seen no negative effects. If Will even takes a nibble of wheat-bread crust, we immediately get a crazy person back in our home. Every moment of this experience has been worth it to have the kids I have today. I believe they feel better, therefor they are happier. I wish any other parents trying to figure it out, the best of luck.

Raising Kids With Special Needs - Bill of Rights

I stumbled upon this beautiful piece today, from a blog entitled To The Max: Take That, Cerebal Palsy!. Max's Mom, Ellen, wrote this wonderful document and has given me permission to share it with all of you. Besides her blog, you may also find her writing for 5 Minutes for Special Needs.

We, the parents, in order to form a more perfect union, establish justice, ensure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.

a Forwarded Message from Thoughtful House

I received this email in my inbox and thought I would forward it on to anyone who is interested. I will be setting my pvr for sure...

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Thoughtful House on NBC News

Thoughtful House
Story Scheduled to be Broadcast this Weekend
August 25, 2009




Dear Friends,

As some of you may have already heard, the NBC television network is producing a special on Thoughtful House and Dr. Andrew Wakefield. We are sending along this note to make you aware of the extent of coverage on various programs and the scheduled broadcast date. First, though, we thought it was important to help everyone understand our decision to cooperate with the reporter, Matt Lauer, and his producer, Ami Schmitz.

In our estimation, there has not yet been any fair coverage in the mainstream media of Dr. Wakefield or the work of Thoughtful House. While we have a large community of supporters that know Dr. Wakefield's credibility and the accomplishments of Thoughtful House and our excellent physicians and clinicians, including Dr. Bryan Jepson, Dr. Arthur Krigsman, and Kelly Barnhill, CN, CCN, many of us in the Autism Advocacy Community spend most of our time communicating with people in similar situations. Our challenge has always been to reach out to a greater population that might not know or understand what is happening with regard to the autism epidemic and the lack of government research into potential causes, which includes looking at vaccine safety. We thought that if we ever were able to communicate with a fair-minded journalist working at a media outlet with both credibility and reach then it was likely to be worth the risk trying to tell our story.

We have taken that chance with NBC. While we initially declined their invitation for a story, we were persuaded to move forward when Matt Lauer was proposed as the correspondent. His reputation for being objective and thorough prompted us to reconsider and ultimately to open our doors. In March, TV crews from The Today Show, Dateline, and NBC Nightly News began gathering material at Thoughtful House in Austin. This involved taping long interviews with Drs. Wakefield, Jepson, and Krigsman, some of our therapists, administrators, and, more importantly, a few of our families. The crews traveled to London to report on the Lancet controversy and interviewed many of the central figures relevant to that part of our story. They also taped interviews, presentations, and families in attendance at the Atlanta DAN conference. Dr. Wakefield was flown to New York by the network and received what he described as a "tough but fair" interview in a one-on-one with Today Show host Matt Lauer. The person we have dealt with throughout the course of this project is Mr. Lauer's producer, Ami Schmitz. Ami has a long resume as a medical journalist and was formerly Dr. Timothy Johnson's producer at ABC News. In our assessment, she has been thorough and diligent in gathering information, documents, and asking the kind of detailed questions that have been glossed over or conflated in previous reporting. We believe, based upon hours and hours of working with Ami, she is writing an even-handed report, which will be narrated and hosted by Mr. Lauer.

Nothing is certain, of course, so we are taking a risk. However, we believe the potential reward is worth that risk; it's entirely possible this will be the first time this subject matter (autism, Wakefield, Thoughtful House, vaccine safety research) has been considered objectively in mainstream media. If that is the case, we have the possibility of communicating with millions of people and that will be nothing but positive for those of us dealing with autism in our own families. We will find out this Friday, August 28. A portion of Mr. Lauer's interview with Dr. Wakefield will be broadcast in an 8-10 minute segment on The Today Show. Either Saturday or Sunday, the NBC Nightly News Weekend will also broadcast a lengthy piece on Thoughtful House and vaccine safety. Coverage will culminate on Sunday night, August 30, at 7 pm EST, with an hour-long broadcast hosted by Mr. Lauer on Dateline NBC. This is scheduled to be adjacent to the Sunday night NFL football game on NBC, which means there is the potential for a large audience. In fact, the cumulative audience for all of these programs means there are likely to be no less than 5 million people who learn about autism and Thoughtful House and, quite possibly, as many as 20 million viewers will see the various broadcasts.

Consequently, you see the reason we decided to cooperate with NBC. The program might just be a game changer in the conversation we are all having in our communities with our governments, health care providers, insurance companies, and overall policies within our culture that marginalize families dealing with autism. We all started off several years ago on what many of us believe is the correct course for treatment and research and it has led us to this moment, and we believe we've made the right decision.

We would like to ask all of you that are active in the autism community to hold all judgment and wait to see the final broadcast. NBC has dedicated substantial time and resources to this story and the producer has made every effort to interview people from all points of view. Our hope is that a fair story will be told and you may submit feedback to the network after the shows have aired. Please do not attempt to contact them prior to the broadcast.

Please share this information with your friends, and if there are any last minutes changes, which we are told is always possible in the news business, you can rely on us to bring them to your attention.

Sincerely,

Anissa Ryland
Director of Operations
Thoughtful House Center for Children

Autism Awareness #8 - Sleep & the Lack of It

Sleep and the lack of it, once dominated nearly every conversation that we had. Get us together with other parents of children with autism and we could talk about our sleepless night stories for hours.

I am thrilled to say that (for now) those nights are but a distant memory. Every now and then someone gets sick and we wake to the sound of Will or Owen singing or kicking the wall and a feeling of dread sinks to the pit of my stomach. Fortunately, it is merely a shadow of the nights we used to have and it passes.

I thought I would copy two of my archived posts about our sleep issues with Will to offer a glimpse of how difficult it can be on families. For any teachers or therapists reading this, I beg of you to have some compassion towards parents who are living through this. Please excuse our absent-mindedness, our emotional outbursts, our short tempers or the fact that our kids are not dressed or brushed. We are hanging on by a thread. Not to mention that our kids' behavioural issues are likely stemming from exhaustion.

Here's a glimpse at our past:

Thursday, January 11, 2007

Sleepless Nights with Wild Will

No fun pictures for today's post. Just some whining and complaining. Can't help it. When your head is filled with cotton, you can't help but waanh a little bit.

Autism or not, I know there are parents everywhere who have kids who don't sleep well. You can tell which families have got'em. They're the ones with the heavy bags under the eyes, the shirts that are on inside-out, the permanent coffee cup glued in their palm. They snap too much at their kids, they choose tv over playing at the park and they generally look like hell. I sympathize. We've got one. Sometimes two (and on those days we don't even make it out of the house in the mornings for people to see if we fit the description).

We should have known from their birth that this was going to be a lifelong battle. I remember after the twins were born, listening to other new moms brag how their kids were sleeping through the night at three months old and secretly hating them. I remember trying all the same things I had done with Jake and wondering why it wasn't working with Owen and Will. I'm not saying that there IS a reason for their insomnia, I'm just saying they were different. I assumed it was because they shared a room and woke each other up all night, or because they had some digestive issues that caused feeding issues that caused them to wake up to feed more often that caused our sleep deprivation that caused our insanity........ Okay, I can't go back there. Many of you can remember those days with me and will recall that it was definitely not a memorable experience to be with myself or Jonathan during that first year and a half. 1 to 3 hours of sleep for 18 months would destroy the strongest of men. We somehow survived it.

But that's my point. I thought that those newborn days were long over. I was wrong. Now I don't have a newborn whose mewlings cries may have been annoying at 3am, but are not nearly as anxiety-ridden as when your bedroom door gets slammed open at 3, your lights all get turned on, your taps are running full, your other 2 kids are crying because they were awoken the same way. You follow the trail of lit lights downstairs to find a bag of bread torn open with its slices all over the floor and your water cooler depleted of half of its contents. Oh! Is that your sleeve of newly developed photos floating in that 6 x 6 ft giant puddle on the floor? The Wiggles are blaring full blast from the tv, your back door is wide open - freezing air blowing in and where is the culprit?? He's got one foot on the front steps after having figured out how to unlock the front door. Middle of winter. An Alberta winter. It means cold. And if I hadn't woken when I did, Will would probably be on his way to take a dip in the freezing Bow River.. his runaway destination.

There are periods that can last a couple of months where I think "we are so lucky that our kids don't have sleeping issues". When the world is right. When we get 7 to 8 hours a night and our kids hop into bed happily by 8 o'clock and sleep right through. How could I have forgotten that those times can quickly disappear and turn into this?

We are now going on Week 3 of Will's insomnia. Sometimes it shows its ugly head at bedtime. Hour after hour of listening to Will kick the wall and vocally stimming his "oo-oo's and ee-ee's" all night long that can suddenly turn into screaming or crying. Seeing his light flick from underneath the door. You can't help but laugh when you hear him knock on the door from the inside. The worst of it is, you can't check on him. If you do, he knows that you'll come back again and again. So you try to stay out. But if you don't check, you're running the risk of finding a bed or a heating vent full of poo (sorry for the weak stomachs out there) and that usually means a huge cleanup and a bath. You may also risk missing a near accident like the other night. Jonathan abruptly opened Will's door because he heard that he was making a ruckus. Will panicked and leaped off the 6-drawer dresser he was standing on, smacking his cheek. -We somehow avoided a trip to emerg for that one.

But the worst is definitely the wake-ups in the middle of the night. You think you've escaped it. After a long day, the kids have been in bed since 7 or 8 because they couldn't keep their eyes open and you crawl in around midnight. 1 o'clock and BAM! The lights go on and so goes the rest of your sleep. When Will wakes up in the middle of the night, it's not a situation where you can cuddle with him in bed until he falls back into la-la land. Will is up. It's like his brain thinks it's daytime. You can guarantee that you'll be up with him at least until 4 and maybe you can catch a few more hours before the rest of the house has to get up. Just like the newborn era.. Jonathan and I usually argue every single night about whose turn it is to stay up with Will. It's a miserable time. Being a reader, I wouldn't mind the extra time to sit up with a book if I knew I didn't have to chase Will. But you can't sit still with that boy because he destroys everything. He won't sit still and he won't stay in one room for longer than 5 minutes.

Last night was the worst. And the reason for this complaining session. Jonathan was out of town and Jake was out for a visit at Sally and Greg's for the evening. I was looking forward to spending some quality time with Owen and Will. As soon as their therapy ended, no later than 5 minutes after, Will took a leap off the coffee table and knocked his hip off the wood. He yelled so loud! The poor little man bruised himself (yet again) and I felt pretty bad for him. The upset from his hurt turned into a full eruption of a tantrum that lasted an entire hour. There was a point last night, when I was kneeling on my kitchen floor, trying to keep my balance as Will threw his whole body weight against me, clawing at my eyes and mouth, trying to bite my hand, all while trying to butt his head up under my chin.. all at the same time.. I had a pot of Kraft Dinner overflowing and sizzling on the stove beside me.. Owen sitting at the table - crying because he wanted his dinner (yaay! as an aside- at least he wanted to eat!).. I looked into Will's eyes and it was like he was torn between wanting me to console him while wanting to take out his anger on me at the same time.. I suddenly saw him 10 years from now. 10 years stronger. 10 years bigger. 10 years angrier. It scared me. I am grateful right now that the tantrums at home have significantly decreased since we moved out here. But when they happen, it's a reminder of how strong and aggressive Will can be. Hopefully as the years go on, he'll learn skills to help him cope with his frustration so that I won't be lying flat on my kitchen floor.. 10 years from now.. after being knocked over by him. Or Owen. Or Jake. Scary.

But as I was saying. The tantrum lasted quite a while and after figuring out that a really, really deep pressure hug was doing the trick to subside his sobbing, Will finally got a hold of himself again. He disappeared in a flash and I assumed he was off for some time to myself. By this point, Owen had huge alligator tears rolling because he could see his box of Kraft Dinner sitting on the counter, but couldn't understand why it wasn't in his mouth. I decided to leave Will be and feed Owen. It's always a trade-off. Could Will be doing damage while I'm sitting here with Owen? So after Owen ate (a whole bowl!), I went up to check on him. Couldn't find him anywhere! Finally realized that the pile of bedding on his bed was Will sound asleep. I wish I had taken a picture. He was so peaceful.

Now here presented the real problem. It was only 5 o'clock. I decided to let him sleep. I thought that I could handle a 3 or 4 o'clock wake up if that was going to be our fate. So Jake went to bed, Owen went to bed. I cleaned up and thought I would get myself to bed as well so that I could get some precious hours in before the wake-up when BAM! 9 o'clock and guess who's up?

I realize this story is way too long and boring, so I'll cut it short. As long as you get the gist of what a night in the life of Stacey and Jonathan is like. It's not sexy and it's not glamorous. It's cleaning poop out of heating vents, it's cleaning up minor floods, it's coaxing Will down off of the top of the wall unit and it's staying up with him from 9pm to 3am, only to have Owen wake up for his day at 4am. Nights in this house are hell.

So again.. excuse my whining and complaining. But I'm back in newborn mode. And for those who were around back then, you probably know to steer clear this time as well. :) It's 7 o'clock.. gonna try for a bedtime and a full night sleep. Wish me luck!

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Wednesday, May 23, 2007

Sleep Deprivation

Will isn't sleeping. Again. We always seem to go through phases with him and before the time change, we had a run of at least a month where he slept from bedtime right through until about 6 o'clock. The time changes have always affected my boys, particularly so with Will. This move to Calgary has only enhanced the difficulty in this transition. It's only late May and the days are getting longer and longer. It isn't dark until 10:30pm which means Will won't sleep. There are darkening shades, a pull-down shade and a curtain on his window but it makes no difference. Something in his brain tells him it's light out and he won't sleep. Bedtimes are becoming more and more difficult because he is fighting it all the way - somersaulting across his bed to kick his heels into the wall, jumping off his dresser, standing in his windowsill, all while yelling the whole time. Not fun.

Lack of sleep for Will means a miserable, moody, inattentive, sleepy little boy all day long. The tantrums have come back and their intensity has kicked up several notches. He bursts into tears for no apparent reason and gets lost in his stimming when he should be attending to task. All behaviours to be expected when you're sleepy.


So off to his pediatrician yesterday. The result was the doctor's recommendation that we try putting Will on Melatonin.

---and here I decided to put aside my laptop and go to bed. It's now four days later that I finish this post---

So here is the scoop on Melatonin:

According to Newsweek® magazine -

"Melatonin is the all-natural nightcap. It's secreted by the pineal gland, a pea-size structure at the center of the brain, as our eyes register the fall of darkness.

"At night melatonin is produced to help our bodies regulate our sleep-wake cycles. The amount of it produced by our body seems to lessen as we get older. Scientists believe this may be why young people have less problem sleeping than older people.

"Studies suggest that... supplements can hasten sleep and ease jet lag, without the hazards or side effects of prescription sleeping pills."

It may have many other uses and has been reported to make people feel better, strengthen the immune system, and reduce free radicals in the body. Current research is underway to determine its effect as an anti-oxidant, immno-modulator in cancer, delayed sleep-phase disorders, and jet lag. Tests are still under way so there is much to still be learned about it and its effects on the human body. Travelers and people suffering from mild sleep disorders.

According to the article, a typical comment from discussion groups on the Internet is, "'Folks, I've tried it and it's great. It has ...restored my sleep cycle, given me lots of energy.'" (6 Nov. 1995, p. 60-63)

From http://en.wikipedia.org/wiki/Melatonin:

The Melatonin signal forms part of the system that regulates the circadian cycle, but it is the CNS that controls the daily cycle in most components of the paracrine and endocrine systems[8][9] rather than the melatonin signal (as was once postulated).

Nobel Prize laureate Julius Axelrod performed many of the seminal experiments that elucidated the role of melatonin and the pineal gland in regulating sleep-wake cycles (circadian rhythms). In humans, melatonin is produced by the pineal gland, a gland about the size of a pea, that is located in the center of the brain, on the dorsal surface of diencephalon.

Normally, the production of melatonin by the pineal gland is inhibited by light and permitted by darkness. For this reason melatonin has been called "the hormone of darkness". The secretion of melatonin peaks in the middle of the night, and gradually falls during the second half of the night. Until recent history, humans in temperate climates were exposed to up to eighteen hours of darkness in the winter. In this modern world, artificial lighting typically reduces this to eight hours or less per day all year round. Even low light levels inhibit melatonin production to some extent, but over-illumination can create significant reduction in melatonin production. Reduced melatonin production has been proposed as a likely factor in the significantly higher cancer rates in night workers,[10] and the effect of modern lighting practice on endogenous melatonin has been proposed as a contributory factor to the larger overall incidence of some cancers in the developed world.[11] As inadequate as blood concentrations may be in brightly-lit environments, some scientists now believe that people's overnight output of melatonin can be further jeopardized each time they interrupt their sleep and turn on a bright light (suggesting that the lower brightness level of a nightlight would be safer). Others suggest that such short exposures do no harm.[12]

So the long and the short of it is that as of last Thursday night, we have been giving Will the melatonin supplement every evening, an hour before Will's bedtime. It's an over-the-counter supplement and Jonathan picked it up in the form of a chocolate-flavoured strip that dissolves on the tongue. The first couple of nights were a total battle and Will kicked and punched while we tried to keep it in his mouth. His exhaustion and lack of sleep were at its peak and Will konked out early both nights, but was up by 1am and was wide awake to start his day. Brutal.

The last two nights have been a little better. I managed to get the whole strip to dissolve, Will fell asleep at a decent hour, but he has still been waking up sometime between 4:30am and 6am. Not as bad as 1am, but still not a great night sleep for Mom and Dad. At least Will seems to be coming back to his old self. His staff say that he was "on" throughout the day and was able to focus and attend to task.

Here's a scary glimpse of what it is like to live with the fear that Will's sleeping habits put on us all. We have installed a security system in the house. Not to keep burglars OUT, but to keep Will IN. There are alarms/chimes on all the exterior doors and we also installed one on Will's bedroom door. Each time the doors open, the chimes go off and the idea is that Jonathan or I should hear and know when Will is out of his room or if he has opened a door to outside. The problem of late is that we are soooo tired from our own lack of sleep that we are somehow sleeping through the sound of the alarm going off. So we are not exactly sure what time Will has been getting up in the morning. We get up to find Will's trail of destruction throughout the house and we can tell he's been up for ages. This morning I heard the chime sound just before 7am. I hollered to Will and he scooted into our room and hopped into bed with us (so cute too because he crawls right in the middle and pulls the blankets up under his chin, then checks to make sure that Jonathan and I both have our blankets pulled up as well). I was thrilled because I thought that he had slept through the night and he was in a great mood. Michelle burst into our room looking for Will. She had just woken up to find the main floor freezing cold and our back door wide open- the wind blowing in. Michelle ran outside to find that the side gate was also open, which means if Will had run out, he was long gone. We all know now that Will was tucked in safely under my covers, but you can imagine Michelle's panic. Yes, Will's safe. But at some point in the night.. or in the morning.. he was up and on the loose. I don't want to think about it anymore.

So that's that. Tonight is a new night and we'll see what happens. Wish us luck!

-----------------------------------

I must say that all of these issues absolutely disappeared within the week that we introduced some major dietary changes. I'll save those changes for another Awareness item. To any of you parents suffering through your own sleepless nights.. we are an example of people who came through the other side of it!! I'm sure I just jinxed it and we could go through the same phase again, but at least now I believe it won't always be so bad. It can get better.

Autism Awareness #7 - Parents - We are enough

My cousin, Jennie forwarded me the most beautiful quote. I wanted to share it with all of the other parents out there who may be struggling, particularly my fellow Autism Mommies...

Sol Lewitt to Eva Hesse:

Just stop thinking, worrying, looking over your shoulder, wondering, doubting, fearing, hurting, hoping for some easy way out, struggling, gasping, confusing, itching, scratching, mumbling, bumbling, grumbling, humbling, stumbling, rumbling, rambling, gambling, tumbling, scumbling, scrambling, hitching, hatchiiing, bitching, moaning, groaning, honing, boning...searching, perching, besmirching, grinding grinding grinding away at yourself. stop it and just DO...trust and tickle something inside you, your "weird humor." you belong in the most secret part of you. don't worry about cool, make your own uncool...if you fear, make it work for you -- draw and paint your fear and anxiety. and stop worrying about big, deep things such as "to decide on a purpose and way of life..." you must practice being stupid, dumb, unthinking, empty. then you will be able to DO! i have much confidence in you and even though you are tormenting yourself, the work you do is very good. try and do some BAD work. the worst you can think of and see what happens but mainly relax and let everything go to hell.

This ties in nicely to the conversation I had with my social worker last night. I am so, so, so very blessed to have L as our family's advocate. She is such a beautiful and compassionate soul who goes above and beyond everyday in her work. When we were discussing something to do with our therapy contracts, I was beating myself up for not doing something I should have, but forgot to. She stopped me mid-sentence and gave me a proper tongue lashing. I'm paraphrasing, but she said:

"Do you think that those Oil execs in Calgary, driving around in their expensive suits in their Lexus or Hummers, with their screaming, bratty, spoiled kids in the back seats, will ever experience the universe's moments of beauty? While they are patting themselves on the backs, thinking of themselves as heroes for pulling off multi-million deals for stripping the Earth, do you think they have ever taken the time to see the beauty in their children's simple accomplishments? Our society looks at celebrities with hero worship, when they've all got their trainers, their personal chefs, their nannies and their personal assistants, do you think they have the time to feel the fierce pride in their children from across the room as their nannies hold them? Parents with children with special needs are the heroes in life. Not just for what you do for your children, which I (she) thinks is above and beyond what other parents would do, but because parenting these kids has given you opportunity to experience life's joys in ways the others will never get to. You will be judged as having been the best you could be for your children, so please stop thinking otherwise."

All parents are experts in beating themselves up. It's so easy to preach and say that we shouldn't be so hard on ourselves, but I think it's instinctive to feel that way because we want so MUCH for our kids. I think that it's particularly difficult for parents with kids with autism. There is so much contradictory information out there right now on what we can or should be doing for our kids. We are in a limbo state right now. Because we still don't know the cause of autism, we don't know what we should do about it. There are a million different kinds of interventions that range from behavioural, to bio-medical, to sensory, etc. Just coping with the day to day of parenting our children can take 150% so how can we be expected to do research on top of that AND attempt new strategies AND advocate AND try to give back to the community and raise autism awareness? It's becoming even more difficult now that autism is so often in the news. When you hear the Jenny McCarthy's who would accept no less than 1000% effort by following her own experienced strategies, it makes the others who may not be taking the same route, feel that they are not doing enough.

I say that the only failure one parent can legitimately feel is if they choose to do nothing at all to support their child, because of their own selfishness or laziness. I won't judge and define what would qualify a parent as being selfish, or lazy, because I'm sure that deep-down, those parents know who they are. But as long as we are all looking out for our child's best interest, to the best of our abilities, we are enough.

Back to Jennie, she also forwarded me an email last week from a friend of hers to whom she had referred my blog:

Hey Jennie,

Realized I hadn't replied to you after sharing your cousin's blog.
Thanks so much. I can honestly say that this is the first blog I've
read in a long long time that made me want to keep reading. I really
like her attitude and can see that she's doing A LOT of good.  She
puts me to shame really.  I've had friends tell me over and over
again that I should be doing just this - creating awareness, telling
our story so other's have a better understanding of what it all
really means.  Even rallying the troops to take action against our
governments complete disinterest in these children.  I just never
felt I had the time.  Between caring for Garrett, getting him to his
daily therapy sessions and working obscene hours to pay for it all, I
thought that was enough of an excuse.  But here, your cousin has
three children - two of them twins on the spectrum!  I have no
excuse. Fortunately I can continue to duck the extra work and just
point people to her site from now on!

I typically tend to steer clear of books or blogs written by other
parents.  Sometimes it's depressing (we're taking this a day at a
time and don't want to speculate too much on Garrett's future).  In
other cases - Jenny McCarthy for example - it's extremely off
putting. In her case she makes gross exaggerations and clearly
doesn't understand autism the ways she claims to. Don't get me wrong,
I think the only way I got through the first week after our diagnosis
was by reading "Let me hear your voice," a book written by a mother
of two autistic children that chronicles her journey through self-
education, trial treatments and eventually "recovery" for her
children. (I could write volumes on why I put the word recovery in
quotes but for now I'll leave it at that).

I did read much of your cousin's blog, however, and it's absolutely
perfect.  She's a great writer/story teller.  She's done a great job
at giving people a window into her whole experience.  And clearly
she's helping - early signs etc.  I recognize so much of our
experience in her account of the early days, the nagging suspicions,
the testing etc. It was all very similar for us. I'll definitely be
tuning it in future.

Thanks!

I am not posting this email for self-promotion. Rather, I felt a bit sick after reading it. I don't blog
to make anyone feel guilty that they are not doing as much as I am. The only difference between
me and other autism parents, might be that I blog. I'm bragging about all that I do so people know about it. I will never know all that the next mom does, unless she decided to blog about it. We don't go around showing off and spouting off our list of accomplishments and efforts (okay, so maybe some of us do!). What I'm trying to say is that I don't want to hear another parent feel badly about their own efforts. It's all relative.

You may not have the same support that I have at home from family or friends
You may have a child/or children whose needs far outweigh mine
You may have a job that takes you out of the home
You may have your own personal health or stress issues that I don't
You may have a social life that allows you to escape the world of autism every now and then

I don't know what separates us, but we all live with different circumstances. No two children with autism are alike and my twins are a testament to that. So why should parents feel that we all should be putting forth the same effort?

As L was trying to explain to me. We are enough because if you are even reading my blog and opening your mind to other's experiences and continuing in your efforts to learn more to help your children, then you are doing more than the average parent. We are enough for our kids.

Just as our children are enough for us. No matter their challenges.

Just please don't tell me you are doing nothing. That is not enough.