TV & Cheese two of my new favourite words

Over the past week John & I have noticed that Andy has really increased his babbling. 

As you can imagine when you have a child that's non-verbal you quickly develop an ear for all of his sounds and words.  We're constantly examining them and questioning whether we hear a difference, doing our best to not 'overthink or overestimate' what new words or sounds we're hearing.

Recently, we've been waiting and demanding Andy to use words that we know he's confident in using.  Such words like apple, open, mom, book.  Andy used to get very upset at anyone giving attention to his mouth, his sounds or his words.  We've been working, along with his IBI instructors, on making this fun.  We've done simple activities like sticking our tongue out and laughing because we're 'so silly' and then getting Andy to do the same.  We've managed to make this game so much fun that Andy is starting to initiate our little game.  Andy's been starting to independently use 'apple and open'.

So, today when Andy suddenly came out with "TV" both John & I stopped, looked at each other to make sure we both heard the same thing and then did our best not to overreact (like jumping for joy).  The irony is that Andy was actually asking for 'playdough' and got the words mixed up.  However the exciting thing is that 'TV' is a new word that we've never heard before.

Apparently Andy wasn't done showing off his skills for the day.  I may have mentioned before that Andy is a camera ham.  He loves it when we take pictures of him, so much so that he often brings us the camera to take a picture of him (cutie patootie that he is!).  This afternoon when he handed me the camera I said "one, two, three, cheese!".......and Andy said "CHEESE!".

Seriously this kid amazes me more and more everyday.  His ability at the age of 3 years to move forward and learn new skills constantly even though there are constantly obstacles in his way.  Andy is my hero!

Back to giggling & games

Life has been busy in the land of Andy!  We seem to have his ear infection under control we have our happy go lucky boy back:)  Andy's back to giggling and playing games. 

The most exciting part for me this weekend was the 'reintroduction' of a game that I haven't played with Andy since he was about 15 months or so.  I used to sit Andy on the couch, then slowly walk away while turning around every once in a while to "make sure he was still there" then I'd suddenly turn around to give him a tickle attack.  I am smiling right now remembering the hours we used to spend playing that game and can still hear his giggling from all those years ago!

So we've changed the game a bit...I now just have to slowly say, "I'M GOING TO GET YOU!" which sends Andy into giggles as he turns on his heels trying to run away from my tickle attack.  The best part about this little game was that Andy never lost interest in playing the game.  His focus was completely centered on playing an interactive game with ME!  It was pure joy...and laughter!  I look forward to many more hours like this to come.

An especially nice treat considering I'm now on my countdown to back to work..only 25 days to go!  What a change that will be for our family.  We have another big change that'll be happening in Andy's life.  On February 8th we'll be losing Meaghan, first teacher crush, as she goes on to a job that she interviewed for months ago. 

Andy behaves the same way with Meaghan as he does with John & I, which is HUGE for him.  It has been such a pleasure to watch their relationship grow and flourish.  So I will openly admit that when this unexpected change came about that I was sent into full blown panic mode, this would be the reason that I didn't blog about it 'til now, I didn't even tell anyone aside from John at the beginning.  I needed time to digest, panic and figure out a 'plan b'.

Here's what I've come to realize... Meaghan was meant to come into our lives.  She took the time to form an incredible bond with Andy and that was a beautiful thing to watch.  I think that Meaghan was with us (though too short) so that we could see the potential of having the RIGHT person work with Andy.  So, we will miss Meaghan terribly, but we wish her well and are still grateful that she came into our lives.

We also now have a 'plan b' for Andy's new instructors and both John & I are thrilled with who will be stepping in.  I'm sure as we go you'll hear about some stories with Ambar & Erin.

I think one of the life lessons that I'm being taught through this journey with Andy is that everything really does happen for a reason.  I apparently keep having to learn this lesson over and over, but perhaps one day thanks to Andy I'll actually learn it and when another bump in the road happens I remember to have a little faith and not panic!  Maybe....one day....haha

2011 Biomedical Conference

John & I are planning on attending.  In fact, I've been invited to be part of the parent round table.  Anyone else want to join us?  There's a group discount for tickets...

 

2011 Autism Conference and Children's Health Fair 

Join us for our 2nd Annual Biomedical Conference!

Featured Speakers:


Dr. Julie Buckley, MD 

A graduate of the University of Miami School of Medicine and of the Jackson Memorial Hospital/University of Miami Pediatric Residency Program, Dr. Buckley implemented an integrative/functional medicine approach into her pediatric practice after her daughter regressed into the world of autism at four years of age. An international speaker, she has written Healing Our Autistic Children, released in 2010, and is co-founder and President of the HEAL! (Healing Every Autistic Life!).  She is also raising a family with the help of a wonderfully supportive family.

Dr. Wendy Edwards, MD 

Dr. Wendy Edwards started her professional career as a nurse working at the Hospital for Sick Children in Toronto.  She completed her medical school training at McMaster University in 1993 and then returned to Sick Kids as a pediatric resident.  In her final year of residency training she was chosen to be chief resident at the hospital.  For the last 13 years she has been working as a consultant pediatrician in Chatham-Kent.  Her special interest in autism stems from the fact that her youngest son was diagnosed with this in 2003.  She lives in Chatham with her husband, two sons and several well-loved pets.

Dr. Sonya Doherty, ND

 

Dr. Sonya Doherty is a naturopathic doctor and Defeat Autism Now! practitioner specializing in biomedical treatment of Autism Spectrum Disorder, ADHD and other developmental concerns.  Dr. Doherty completed her naturopathic training at the Canadian College of Naturopathic Medicine in Toronto, ON, and has been a board certified ND since 2003.  Her personal experience with ADHD motivated her to focus on biomedical treatment of developmental issues.  Dr. Doherty is the mother of three young children and is a passionate advocate for supporting development for all children.

The conference will feature seminars by our exciting and dynamic speakers as well as a parent round table hosted by Dr. Buckley and Dr. Edwards.  Come hear about ground breaking research, exciting new treatments and inspirational parent stories!

The 2011 Autism Conference will also have a Children's Health Fair that is free and open to the public.  To become an exhibitor at this exciting event, contact info@treatautism.ca.

Hosted by: THE VITAMIN STORE AND NATURAL CARE CLINIC

Like a kid in a candy store

On Wednesday I got to visit Organic Garage, a family run grocery store in Oakville, Ontario, for the first time.  I didn't have high expectations.  This was not the first time that I've made a special trip to go and check out a health specialty store only to be disappointed.  Wellllllllllll....not this time! 

Seriously, I was like a kid in a candy store!  I was extremely impressed at the variety in choice of products as well as the knowledge of the staff.  I have found many new gluten and cassein free products.  I'll share some of them with you now and as I get to taste test them with Andy I'll add my review to my page Fav Food Products.

Some of the ones I'm looking forward to exploring in the next few weeks are:

• Road's End Organics
• Annie's Homegrown My girlfriend's kids LOVE their Bunny Fruit Snacks
• Orgran
• Live Food Bar
• Organic Works Andy scarfed their Cinnamon Buns (both John & I drooled a little over them too!).  We're trying their Cinnamon Raisin bread this week.

As I was going through the check out I notice a little package that I thought Andy might find interesting called "Crunchy Quinoa & Almonds Quin'Bites" by Your fitness dish so I added it to my basket.  They're a hit and are they ever tasty!!!  I don't care what diet you're on, you will love them!

GFCF Doesn't Work?!? I disagree...

Andy has been on the GFCF Diet since June 2010.  We have seen dramatic changes thanks to this diet as I've blogged about many times before.  With all good things once you've been doing them for a while sometimes you take it for granted. 

I am a FULL supporter of the GFCF diet but sometimes I wonder just how much gluten or casein would be enough to impact Andy?  Can his system handle a piece of cheese here and there?  A cookie perhaps?  Well we need to wonder no longer in this household!

In the past week, our family has been under siege by germs between ear infections, sinus infections and head colds there's plenty to go around.  Needless to say our family's usual rhythm has been off.  John & I are quite in sync as a couple and can usually count on each other to be 'on the ball' however throw two colds in the loop and we're not quite as sharp as we usually are.

A few days ago shortly after lunch Andy was looking for an extra little something to eat.  I told John that he could give Andy one of the GFCF cookies I made for him earlier.  A few moments I look over to see Andy sitting at the table eating a cookie....NOT his special GFCF but one of the chocolate chip cookies that a friend sent for  my hubby.  FULL OF BUTTER AND WHEAT AND EVERY OTHER GFCF POSSIBILITY ESSENTIALLY!  Yikes!

After doing a double take, I look over to my hubby and I'm pretty sure I said something like "Seriously??".  This clues him into what he's accidentally done and tries to fix it by then going and getting Andy the original GFCF cookie to give him.  In the meantime Andy happily finished his first 'illegal' cookie and even more happily accepted his next cookie!  He was in heaven and we just had to laugh.

The only question we had left was what would the effect on Andy be?  If any? 

There were a few...

1. That afternoon that Andy had that yummy cookie he would NOT listen.  He had no interest in playing with me or any focus.  He had mommy all to himself for almost two hours because daddy & Em were napping and normally he would loved it.  Unfortunately he wasn't able to focus or sit still to have fun.
2. TODAY...Andy has had FIVE poops and counting.  It's right back to that same sickly 'sour milk' smell that used to be an every day scent in our house.  John said if he hadn't been here to witness it himself today he wouldn't have believed it.

So I can tell you that our resolve and belief in the GFCF diet has just become even more solidified!  And to all those people that still try to say that it's mumbo jumbo....to be polite I'll just say that I disagree!

Facing Autism in New Brunswick: Autism and the Media: Anti-ABA Activist Michelle Dawson Is Back In The CBC Spotlight Denouncing ABA

I wanted to share this post from a blog that I've been following for a few months. I share Harold's confusion at CBC's willingness to spotlight such an inaccurate activist.

Facing Autism in New Brunswick: Autism and the Media: Anti-ABA Activist Michelle Dawson Is Back In The CBC Spotlight Denouncing ABA

The Autism Vaccine Debate

I just read this article online earlier and thought that it was worth sharing with you.  I will add the caveat that I am not necessarily the biggest fan of Dr Wakefield, but I do believe that BOTH sides in a story need to be shared. 

So do me a favour, take a moment and read the following article, try to keep an open mind.

In the Vaccine-Autism Debate, What Can Parents Believe?

Last week, parents were told a British researcher's 1998 report linking the MMR shot to autism was fraudulent -- that this debate about vaccines and autism is now over, and parents should no longer worry about giving their children six vaccines at a single pediatric appointment or 36 by the time they are five years old.

Is that the whole story? Dr. Andrew Wakefield's study of 12 children with autism actually looked at bowel disease, not vaccines. The study's conclusion stated, "We did not prove an association between measles, mumps and rubella vaccine and the syndrome described [autism]."

Dr. Wakefield did something I wish all doctors would do: he listened to parents and reported what they said. His paper also said that, "Onset of behavioral symptoms was associated, by the parents, with measles, mumps and rubella vaccination in 8 of the 12 children," and that, "further investigations are needed to examine this syndrome [autism with gut disease] and its possible relation to this vaccine."

Since when is repeating the words of parents and recommending further investigation a crime? As I've learned, the answer is whenever someone questions the safety of any vaccines.

For some reason, parents aren't being told that this "new" information about Dr. Wakefield isn't a medical report, but merely the allegations of a single British journalist named Brian Deer. Why does one journalist's accusations against Dr. Wakefield now mean the vaccine-autism debate is over?

One of the actual parents from the study, who talked to Generation Rescue, wondered the same thing:

How could the BMJ [British Medical Journal, publisher of Brian Deer's article] scrutinize what Brian Deer has said without looking at our children's medical notes which they are not allowed to have? This needs to be challenged.

Another parent of one of the 12 children put things even more strongly:

To hear that my son's gastrointestinal condition has been extensively refuted, by unqualified and ill-informed individuals who have never laid eyes on him, looking at and mis-interpreting scanty medical notes without the courtesy to ask for our version of our son's early childhood, flies in the face of everything that the medical community and its professional bodies seek to represent. This is especially curious as gastrointestinal issues in autism are well recognized and documented and are included in the UK government's own best practice guidelines for early investigation and treatment.

American media, why aren't we hearing from these parents? If Brian Deer's allegations are actually false, if the Lancet 12 parents stand with Dr. Wakefield, then what exactly are moms and dads supposed to think about last week's media circus?

I know children regress after vaccination because it happened to my own son. Why aren't there any tests out there on the safety of how vaccines are administered in the real world, six at a time? Why have only 2 of the 36 shots our kids receive been looked at for their relationship to autism? Why hasn't anyone ever studied completely non-vaccinated children to understand their autism rate?

These missing safety studies are causing many parents to approach vaccines with moderation. Why do other first world countries give children so many fewer vaccines than we do? What if a parent used the vaccine schedule of Denmark, Norway, Japan or Finland -- countries that give one-third the shots we do (12 shots vs. 36 in the U.S.)? Vaccines save lives, but might be harming some children -- is moderation such a terrible idea?

This debate won't end because of one dubious reporter's allegations. I have never met stronger women than the moms of children with autism. Last week, this hoopla made us a little stronger, and even more determined to fight for the truth about what's happening to our kids.

Unplanned family outing....amazing doctors!

An unplanned family outing today...and not one that we were hoping to make, but definately one for the books!

As mentioned yesterday our kiddies were not feeling well.  This morning we woke up to find BOTH kids in worse shape and a call to the doctor's office was in order.  My mommy instincts were telling me that it was worth braving temperature of -19C thanks to the wind to avoid the 'weekend rush'.

We moved to this area over a year ago and a few months ago managed to get accepted into a doctor's office.  This medical practice is like none we've ever experienced.  It's a new model that Ontario's trying out to attempt to solve the issue of not enough doctors. 

At Brantford Medical Clinic, there are seven doctors that practice together.  You are allowed to see any of the doctors so that one is always available to you!  Not only that they are connected with the Brantford Urgent Care Clinic which is located in the same building. 

As registered patients (and YES they are still taking patients) you also have the ability to call and request a same day appointment....around here it's pretty rare that you'd ever get in to see your doc on the same day they're so overbooked.  If a doctor is not available to see you in the clinic, then they will book you an appointment in the URGENT CARE upstairs!  Many of the docs work in both clinics and have access to your own files.

So far we've met 5 of the 7 doctors belonging to this practice (when you have kids you tend to be there more often then usual).  We cannot say enough about how IMPRESSED we are with the caliber of doctors, nurses and receptionists that are working at this clinic (both of them).  I called at 8am for an appointment for both kids and we were in seeing a doctor shortly after 10am.

When you have a child with special needs, especially one on the Autism Spectrum, you have a long 'wish list' for your dream doctor. 

For us our list looks something like this:

• good with kids
• knowledgeable doctor
• aware of Autism
• open to the Biomedical Approach
• willing to listen
• willing to look outside the box

Sounds a little like a Mythical Creature doesn't it?  We've heard rumours that these incredible type of doctors exist however this was not the experience we'd had with our previous doctor's office.  To say that my old doctor 'gave me the gears' when I originally told her that we were seeing a DAN Doc (Defeat Autism Now) would be a MAJOR understatement.

Well, I can tell you that it seems we have found several of these mythical creatures working at our new doctor's office!  All of the doctors that we have met at this new clinic have been great with kids, knowledgeable doctos, aware of Autism (current issues), willing to listen, willing to look outside the box....AND OPEN TO THE BIOMEDICAL APPROACH!

We are so grateful to have continued to find incredible people to join "Andy's Team", we are truly blessed.  Right down to today ordering a new prescription for Andy (ear infection) in a chewable form as he absolutely refused to take the liquid bright pink berry kind! 

Medical professionals like this are examples of excellence in their field.  Two of the doctors have even requested the address for this blog to read more....thank you doctors!  You have made our wishlist a reality.

A proud mommy even if I feel like ripping my hair out today!

Today was a miserable day in our house.  There were many tears and tantrums. 

Emily is cutting a new tooth and Andy seems to be fighting an ear infection.  Thus we will be getting to spend tomorrow at the doc's office tomorrow. 

On days like these, when I feel like I'm about to pull all my hair out, it's important to take a moment and look back at how far we've come.  I may have been close to losing it today, but really it wasn't so bad. 

I know why the kids were off, I know there's easy fixes coming, I know that this is not what I have to deal with every day....and before I couldn't say that. 

Now, those days are really few and far between.  So take a moment to take a look back on how far we've come....I am such a proud mommy (even if at times I want to pull my hair out!).
________________________________________________

When Andy started IBI in September, 2010 he had very few words.  Mama, bye (approximation) and baby were about all we would consistantly hear from him.  Occasionally he'd use a few words once...like 'up' or 'ilk' for milk. 

We've now started to keep a monthly list of Andy's words...to remind us how far he's come.

November 2010:

• Blue (approximation)
• Ball
• Up
• Happy
• Pee Pee
• baby
• Blue block
• Open (approximation)
• Ham

December 2010:

• Ball
• Block
• Up
• Open
• Pee
• Push (approximation)
• Apple
• Bye bye
• Eat
• Twinkle (tried hard)
• Banana (approximation)
• Baby
• Emily
• Mama
• Mommy
• Spider (3 times in one day - Itsy Bitsy is a powerful thing!)

January, 2011:

• pee - not just repeating it, but initiating it during potty training
• green - even with a 'g' sounds when a speech therapist was visiting!
• yellow (approximation)
• blue
• diaper (without the 'd')
• rain
• Itsy bitsy spider
• help (approximation)
• clap
• happy
• ball
• moo
• baa
• lalala
• bow wow
• blueberry - twice in one day (approximation)
• BOOK...several times!
• want book (approximation)

 To keep up to date on Andy's Word List then make sure to check my page titled "words".  I update it regularly:)

You never know when the door will open a crack...

Not knowing when the dawn will come

I open every door.

Emily Dickinson

We have high hopes and big dreams for Andy.  Since we don't own a magic looking glass (if you have one feel free to lend it to us), we don't know what the "magic" answer is to unlock Andy's autism world.  So in our own way as a family we do our best to "open every door".

Today the door opened a crack...

Andy seems to be fighting a cold today so he's a little off.  Also, today was his first full day at preschool (it went great) so he was quite tired when he came home.  Knowing that Andy was tired we had a pretty chill evening ahead of us before bedtime.  Andy surprised us with not one but two things he did during dinner.

Andy out of the blue reached out for Emily's (baby) spoon from her food bowl.  John & I did our best to not react and watch out of the corner of our eyes just to see what he would do.  I personally though he was going to test out what she was eating in case he liked it better than his dinner.  Instead, Andy reached over to FEED EMILY!  Never would we have even thought he would have the awareness or taken the initiative to feed Emily, who had been protesting because I tried to take a bit of my own dinner before going back to feed her!  We did our best to acknowledge what a great thing he did without going over the top, otherwise Andy seems to get too embarassed and won't repeat things again.

But our little man wasn't done there...at the end of his meal he wanted to get down.  Andy tried using hand over hand to let me know that he wanted to get out and for me to undo the buckle.  Always trying to give Andy an opportunity to use words, I paused and removed my hands and asked if he wanted me to OPEN the buckle.  Taking a few moments to think about it and said "OPEN!".

Earlier today I had a conversation with someone about timing.  The just of the conversation was how no matter what you believe the reason (God, timing, coincidence) things tend to happen for a reason.  Over the past few days I've had some frustration building up in me towards other people not being 'on board' or doubting our path that we've layed out for how we're going to tackle Andy's autism. 

I'd like to add a side note that this frustration is not directed at any of our beyond supportive family members or close friends.

And then, like today, the door opens another crack and I know that we're on the right path.  I look forward to the day when I can say that we've managed to not just open the door a crack, but throw it WIDE OPEN!

A smart man!

I read a quote the today on Twitter that I can truly says sums up our attitude about Autism....

"For years we have heard the experts say that autism is a lifelong disability...This simply is not true anymore."

Bernard Rimland

And who is Bernard Rimland?  This was the first question that popped into my mind...with the follow up thought of 'man that guy is smart'! 

It turns out he's a psychologist who founded the Autism Research Institute and more importantly a father to a high functioning son with autism.  What a great quote to find and realise that it comes from the man who founded the organization that supports our protocol that we're following to treat Andy's autism through diet, supplements and IBI therapy!

I read this quote to my mom and she asked why it wasn't true anymore.  Good question...here's my answer, there are simply no boundaries in sight anymore for how far Andy or any child with autism can go.  It is possible to fully recover (not cure) your child. 

Does it mean that we think Andy will suddenly wake up one day and not have autism? 

No, it doesn't...but do we think that one day it will be almost impossible to detect?  YES! YES! and YES!

Like I said...what a smart guy!

A friend like Henry

AUTISM is political. 

Yup, no matter how you slice it and how much you try to avoid it, somehow autism always comes back to politics.  It's everywhere in the media, often a debate by the water cooler and more than anything amongst the autism community itself (especially about vaccines, causes and treatments).  I thought that I could stay out of the 'political' debate side of autism, but I'm learning that the deeper and farther we get on this journey that it's simply impossible to avoid.

Today, I'm not going to discuss politics.  Instead I'm going to talk about LOVE! 

The love of a parent, a family, a sibling and a dog.  Sometime before Christmas a very dear friend lent me a book called a friend like henry by Nuala Gardner.  When Andy was first diagnosed I saturated myself in books, articles and anything else I could get my hands on.  John & I admit freely that we were completely ignorant when it came to autism. 

In the past few months, I've shied away from reading books by many parents.  I found that I was getting buried under negativity.  So it took me a few months to read this book but I wasn't been able to put it down once I started!

Nuala writes the story of two parents battling our common mortal enemy of autism in every way they can possibly imagine...but what was their son's best answer?  A dog - a golden retriever named Henry to be exact.  It's a beautiful, honest story of a boy, Dale, trapped in his autism world who's drawn out with the help of Henry.  The parents use Henry to reach Dale, spend time with him and teach him skills (like caring for someone else) and emotions.

I can tell you that I cried and laughed with this book many times over.  I appreciated the honest way that Nuala told the story as a mother that loved her son with all her heart, even though she was often doubted that she knew what she was doing or even knowing what to do next. 

I loved this book!  I feel like I've made a friend in Nuala that's been down a road that I've just begun to go down even though I'll likely never meet her.

I recommend a friend like henry by Nuala Gardner to anyone who has someone in their life with Autism, who wants to know more about Autism or if you simply are looking for a good read. 

There's also a movie that was released based on the Gardner family story called After Thomas (I've included the link to the movie trailer) that I've yet to see but I look forward to tracking it down soon!

Here's a link to a clip of an interview with Nuala & Jim Gardner that you might interested in.

Happy reading!

The Guilt Factor - The Autism At Home Series

When a child is diagnosed with autism, parents develop a new vocabulary.  Conversations contain words like ABA, receptive and expressive language, discrete trial training, eye contact, floor time and biomedical approaches.  Parents share their joys, their fears, their strategies and their dreams.  In fact, almost everything is easily discussed except one thing – THE GUILT FACTOR.
While it’s proven time and again that parents are NOT responsible for their child’s autism, many parents have this nagging little feeling somewhere deep inside that they are to blame.  If they don’t feel they caused the autism, they typically feel that their child would be doing better and progressing faster if they just put more effort into it.
One can only equate it to preparing for the Bar exam.  No matter how much you study, you could always do a little more.  Simple every day activities result in great emotional stress for an autism spectrum parent.  It’s not long before the “guilt factor” spills over into every area of life.
HOW THE GUILT FACTOR IMPEDES YOUR LIFE
Your autism spectrum child is interested in animals.  In a completely “non-typical” method of conversation, your child names all the farm animals and wants you to repeat it back to him.  Again and again and again!  You do so and the guilt factor sets in.  “This is so inappropriate” you think to yourself.  “I should take this opportunity to teach my child how to converse appropriately.”  But you know that if you don’t comply to your child’s wishes he’ll have a meltdown, and you’re busying making dinner, your two year old is crying because she’s hungry and your eldest needs help with her homework questions.  Disheartened, you continue the banter with your child, blaming yourself for not doing a better job.
The telephone rings and it’s your friend.  You’re thoroughly enjoying the conversation but just then you notice your child repeatedly spinning the wheels on a toy truck while making a strange noise.  “I shouldn’t be talking to my friend.  I should be teaching my child how to play with that toy” you silently berate yourself.  Then your child begins to run up and down the hall and you silently reprimand yourself.  “I must get off this phone.  Time is precious and I should be engaging my child”.  Feeling discouraged, you’re torn between hanging up on your friend and redirecting your child.
When picking up your child from OT, you chat politely to the other parents.  One mother mentions that her daughter has extra speech therapy.  Another one talks about the social skills group she enrolled her son in.  Another one declares that she just signed her child up for Karate with an aide to help him.  Despair and guilt wash over you.  “These parents do so much” you think to yourself.  “How do they do it?  Where do they find the time?  I should do more.  Perhaps I should have signed my child up for Karate instead of swimming.”  As the guilt factor sets in, you shamefully accuse yourself of being a bad parent.
It’s been a long day and you’re exhausted.  You’ve been to work, dealt with tantrums, spoken to three teachers, rearranged your child’s therapy schedule, cooked dinner, bathed your children, cleaned up and prompted your child through simple activities.  As you plop on the couch to watch some TV, that feeling of guilt washes over you.  “I shouldn’t be relaxing.” You say to yourself.  “I should be re-writing my child’s program.  I should be researching new methods of treatment.  I should be going over my child’s IEP.”  But your brain can’t take one more thought about autism and you guiltily sink into the couch and think “Tomorrow, I’ll tackle it tomorrow”.
KEEP IT IN PERSPECTIVE
Paradoxically, parents of autism spectrum kids are one of the most proactive groups that exist.  While they commonly feel they’re not doing enough, these parents should be honored and commended.    They’re able to cope with more in a day, a month and a year than most can conceive of coping with in a lifetime.  Their resilience, creativity and persistence help their children progress and reach potential that nobody thought possible.  The great strides that have been made in the autism community are largely due to parent driven establishment.  The next time the guilt factor sets in, keep it in perspective and remember the following points.
1. You’re not alone
You are a great parent.  You are your child’s best advocate.  You have a lot on your plate.  Your days are often filled with a great deal of mental anguish and emotional stress.  You help your child through small activities that most parents don’t even think about.  You fight for services for your child.  You fight for the best class placement.  It can be tiring.  It can be exhausting.  As you look around, you often feel that other parents are doing a better job.  Realize they think the same of you.  The guilt factor impedes their life too.  Parents of autism spectrum kids have a common bond.  They understand, they empathize and they spur each other on.  If you declare “My 6 year old dressed independently today” they rejoice with you, because they too appreciate every milestone, large or small.
2. Organizations
Parents of children with autism have been the catalyst of some of the largest and most successful establishments for helping those on the spectrum.  This is on a worldwide basis.  A large number of autism schools have been driven by parents.  Special education distributors and manufacturers often have parents at the helm.  Researchers and educators are often parents.  Increased services in schools and communities are the result of parent driven efforts.  Non profit establishments have teams of dedicated parents who are committed to helping those on the spectrum.   You might not be part of one of these establishments but you have made a difference.   It’s the combined unity of parents and a strong voice when advocating for your child that calls these organizations into being.
3. Relationships
When your child is born you are instantly a parent.  The role of a parent is to love, educate and support your child.  You provide your child with values, teach right from wrong, build their self esteem and guide them to become happy, independent adults.   When you have a child with autism, you become a teacher.  The role of a teacher is to educate a child.  Whether it’s a small task or a large task, teachers use every opportunity to educate a child.  As a parent of a child on the spectrum it’s difficult to maintain a balance.  While you want your child to learn as much as possible, you also simply want to be a parent.  The next time the guilt factor sets in because you’re not teaching your child at every moment, release it immediately.  Your child loves it when you’re just being a Mom or just being a Dad.  While it’s perfectly fine to teach some of the time, a healthy balance leads to a healthy relationship between you and your child.  Enjoy those moments with your child.  Even if they aren’t typical interactions, they’re certainly fun!
4. Acceptance
On asking adults with autism “What’s the single piece of advice you would give to parents of autism spectrum kids?” the answer is almost always a unanimous “Unconditional love and acceptance.”  For just a moment, view your child’s perspective.  Almost every action gets corrected.  Almost every behavior is modified.  Method of play is considered inappropriate.  Self stimulatory behavior is often halted.  Your child is constantly being told to think, talk and act in a way that is foreign to his inner nature.  It can’t be easy to keep one’s self esteem intact.  I certainly advocate teaching as many skills as possible to help your child function in life.  However, it’s essential your child knows you believe he is perfect just the way he is.  It’s simply unfortunate that others might have difficulty understanding him.  Your child should intrinsically know the reason he’s learning new skills and altering his behavior is not because you want to change him, but because it will help others relate to him, grant him acceptance and allow him to lead a more productive life.  The next time you feel guilty about not correcting your child’s behavior or mannerisms, remember that delighting in your child’s unique qualities is just as important as teaching appropriate actions.
The next time the Guilt Factor impedes your life, simply acknowledge its presence.   You don’t feel guilty because you’re a bad parent.  You feel guilty because you’re an outstanding parent.  You’re a parent who loves your child dearly.  You’re a parent who is so committed to helping your child learn that you feel bad taking time for yourself.  Your hard work, dedication, energy and eternal giving are unbeknown to most and recognized by few.   I acknowledge you and say “Well done!  I know how committed you are and what it takes.  You are an exceptional parent and I recognize your greatness!

© Jene Aviram

Please share the knowledge. Sharing is caring! = )

Thank you Sandra Boynton!

We love Sandra Boynton in our house!

If you're not familiar with her then let me introduce you...she's a children's writer of beautiful board books.  They have fun little rhymes with short sentences.  Short sentences are key when reading a book to Andy.  I'm not exactly sure when we introduced Andy to her books however I do know it was before the age of 1 year old.

Andy's favourite book is MOO BAA LA LA LA...it's a sweet book that goes through several animals and their sounds (ie. A cow says...moo!  A sheep says...baa!)  I cannot count how many times I've read this book but if I was given a nickel for every time I've read it or recited it I'd be a rich woman many times over!

In an attempt to allow Andy more opportunities to speak I make sure to pause before saying the animal sound.  He started by just staring at me, then pointing at MY MOUTH for ME to speak.  I took this as a good starting point.  Then Andy started to OPEN AND CLOSE his mouth, mimicking my mouth.  This was an even bigger step.  Then Andy started to make some sounds after pausing, but they really weren't sounding like the animal sounds at all.

Well....as of a few weeks ago Andy is now making almost ALL OF THE ANIMAL sounds!  This is a HUGE deal.  The bigger step was that today he also made those sounds in front of his 'teacher crush' during his IBI session today!!

So, thank you Sandra Boynton...I may have read your book more often than anyone around and swear I here it in my sleep, but I am forever grateful to allow the opportunity to hear my little one's voice!

Tales from the GFCF Kitchen

In June of 2010 Andy started on the GFCF Diet.  I have since been experimenting almost on a daily basis with cooking and baking gluten and cassein (dairy) free.  It's actually quite a daunting diet to get started on especially since these ingredients seem to be hidden in almost every product out there. 

Once you have understanding the ingredient lists down it's not so bad.  Part of the problem is that many of the products and recipes that are out there simply taste AWFUL!  When we first started the diet we bought many 'premade' products.  I can tell you that John & I were disgusted by the taste of many products.  Although we were seeing the changes in Andy, we didn't think that it was necessary to torchure our child at the same time!  If you're interested in the diet make sure to check out my page of Fav Food Products that I update regularly.

Along with being on a search for tasty pre-made products for those times when I don't have time to make things from scratch, I'm also on a search for the tastiest recipes.  Many of our friends and family have been our guinea pigs (although Andy is the Official Taste Tester)...my biggest qualification for a 'successful' recipe or product is if it passes the test with people NOT on the diet.  If they're not on the diet and they don't notice the difference (or they like it more!) in taste or texture.

Since I know that I'm not the only mommy out there on this baking mission I thought I should start sharing my TALES FROM THE KITCHEN!  Tonight I tried a new mix from Only Oats called Grandma's Oatmeal Cookie.  At the beginning of the month I tried their Decadent Chocolate Muffins and was thoroughly impressed.  I have to say that I'm currently undecided with about the Oatmeal Cookies.  I notice that they seem to have an aftertaste that seems a little bitter that I can't quite place.  Now, I may be overthinking this one because I make a pretty mean GFCF Oatmeal Cookie myself....however, Andy will be the deciding judge tomorrow at snack time.  I'll keep you posted!



I added a drop of Dark Chocolate (dairy/cassein free)

ANDY APPROVES....mommy is still not convinced, but I'm not the one that matters really!

Next steps...

I haven't posted in a few days, I can't really explain why. 

I think I've been enjoying the 'quieter' moments after the holidays.  Doing my best to try and help our family ease back into the hectic schedule that is our weeks when not on holiday time! 

Andy has transitioned exceptionally well to his new preschool.  We continue to be impressed at the staff's willingness and interest in being directly involved with Andy.  The kids at the school are getting familiar with Andy as well.  We've noticed that they are quite open to him.  In fact, I was talking with the Director and she told me that during circle time when they were doing a 'turn taking' song FOUR KIDS picked Andy...it got to the point that she had to tell three of the students that he'd already had a turn. 

As we're always wanting to look forward to Andy's next steps - we've already started planning for Junior Kindergarden.  This is a crazy concept in some ways - but Andy turns 4yrs in September.  Actually we're registering Andy this month!  Yikes!  I feel like my little baby is growing up too quickly already! 

To help Andy prepare for JK as of next week he'll be trying out a full 6 hour day program at preschool - from 9am to 3pm.  Truth be told I'm nervous about how these full days will go as there's a minimum 1 hour quiet time that's a ministry guideline for his age group, but at the same time I'm excited for him. 

Andy seem to truly love this school, he comes home happy and has taken to running into the classroom as soon as John drops him off.  And as long as Andy's happy...so are we!

New year, new goals Part 2

Remember I said I was going to sign up to be a Rescue Angel??  Well it's official as of today I'm signed up and ready to go!  So I guess this means that I need new goals eh? haha

Rescue Angel

Alisa Foster
St. George, Ontario

Profile for my child, Andy, born in 2007:
Major symptoms:
loss of speech, loss of eye contact, loss of play skills, stims: jumping, hand flapping, toe walking, sleep disruptions (night terrors), constant diarrhea, manic laughing, no focus, meltdowns everyday, limited eating: focussed on milk/yogurt, narrowed food choice to 5 items
Therapies that were helpful to us:
Started seeing DAN Doc in June 2010, began GFCF diet immediately, meltdowns stopped within 1 week, nightmares disappeared. Started probiotics and diarrhea settled - was regular within two months. Started supplements under DAN Doc's guidance - eye contact started to return, stims started to settle, eating variety increased, personality started to emerge, sleep disruptions stopped. Began IBI in September 2010. Now Andy is using full eye contact, playing with other kids, learning skills every day, starting to use words and no longer has meltdowns or diarrhea.

New year, new goals

I haven't posted for a few days because I've really been enjoying pondering my last post.  I am still amazed at the difference in Andy in these few short months.  I actually just said to someone today when I was talking about our holidays that I felt like for the first time we got to experience a taste of what a 'typical' family gets to experience over the holidays with young kids!

Andy started back at preschool today after an over two week hiatus.  I was particularly nervous at how Andy would deal with being back to a stricter routine again as we've had lots of family time these past few weeks and he was up for almost an hour & a half last night.  Apparently I wasn't the only one thinking this way as Andy's Resource Teacher through Lansdowne Children's Centre was waiting for him along with his Resource Assistant (like an EA for preschool).

Of course because we were ready for an upset, Andy sailed through his morning back to preschool with flying colours!  In fact, they were commenting on how well Andy seemed to be at listening to instruction and doing many more things independently.  This was exciting to hear as John & I had noticed a leap forward in Andy's skills over the holidays so to hear that they've crossed over to a new environment without mom & dad there for support is fantastic news!

Here are some of the comments from his communication book....

• Played with A & T (yeah to playing with kids!)
• Did a great job listening to instructions
• Sat still during "taking turn song"

It's so exciting to read these kinds of comments!  Andy seems to be doing so well at this new preschool that in two weeks we will actually be increasing his time there from two mornings a week to two FULL DAYS a week.  I think it will help us continue to lay the groundwork for school without making it overwhelming.

Andy still has a long way to go and still has many challenges every day - but as John says...this kid is picking up steam!  Go Andy, go!

So, now it's a new year and time for some new goals...this time for mommy. 

1)  I have listed this blog as of yesterday on Autism Blogs Directory.  When I first started this blog it was to share Andy's story with friends and family (as well as a journal).  As we continue on our journey I'm discovering that we've been one of the lucky ones that has located many resources in a very short period of time.  I think there's now a responsibility to share our story with others...maybe we can help someone else...or maybe they can help us.  Take some time to peak at some of the blogs, they're some great ones.

2)  Rescue Angel - this one I'm still working on but I'm close.  I'm registring myself as a Rescue Angel with Generation Rescue (Jenny McCarthy's organization).  It's a list of local parents that are following the biomedical approach to treating Autism.  Although it's not been long I've done this at the urging of friends as well as our Naturopath/DAN Doc.

3)  Public Speaking - I'm going to start to share our story more publicly...in fact, I'm speaking at a conference in May this year....I'll keep you posted with info!

So really my 'big' mommy goal...to continue to learn as much as possible, to help another along the way whenever possible...and to enjoy Andy & our family as much as possible.

All the best in the new year!

What a difference a year makes

Take a peak at Andy Christmas 2009....

When I look at this picture, I see my baby boy.  My baby boy who was spiralling out of control and we had no idea how to stop it.  Every day he was losing a skill, an ability...and saddest of all his personality.  Every once in a while we'd catch a glimpse of him but not often.  Heart wrenching when your love is so deep for you child and yet there's nothing you can do to help him.

Now take a peak at Andy Christmas 2010...

When I look at this picture, I see my 'big' boy.  Who's grown up more in the past year then most.  Who has faced more challenges and surpassed them.  I see a boy who is back to gaining skills every day.  Who is full of possibility and strength...and most importantly I see his personality.  Andy is full of humour - he's a ham for the camera, he loves his family, he's enjoying playing with friends and looks forward to learning every day.

I think what I see most when I look at Andy now is HOPE!  So unlike last year, I can honestly say that I look forward to seeing what the next year has to bring...because what a difference a year can make.