The non-WonderMom

If you're a regular reader of Andy's blog, you've noticed that I haven't posted in a week.  It's been a long week, I have personally been mentally exhausted.  I have been feeling beat up, exhausted and sad.  The combination of my return to work and insane pace that we've had as a family over the past year has finally caught up with me.

Without mincing words, it has kicked my butt.  Yup, this girl who many have mistakenly referred to as Wonder Woman has crashed big time.  

Why am I sharing this tidbit?  The whole reason that I started this blog was to share Andy's story with our friends and family.  As I continued on this rollarcoaster ride I knew I wanted to share our journey with other families.  Hopefully some of the entries would give those parents the feeling that they weren't alone and share some resources we've found along the way.

Over the past few months, I've had more than one person refer to me as WonderMom.  I quickly let them know that I'm not even close to a superhero by declaring many of my faults but I thought it might help to do it a little more publicly.  So, my loyal readers, this post is about me - the non-WonderMom.

Here are a list of all the things that you may not know about me:

1. I usually have piles of laundry, mostly clean, in our laundry room (thank goodness I can close the door).  There's usually so much laundry that most of our closets and dressers are empty!
2. I never make our bed...or anyone's elses in the house!
3. On my days off, I rarely make it out of my pyjamas (Andy's IBI IT's can attest to that).
4. I have at least 30 extra pounds that I can never seem to focus on taking off.
5. My hubby often makes dinner for the two of us because I am too focussed on the kids to realise we haven't eaten.
6. I rarely get to see my friends or my family to just hang out. (I'm hoping to improve on this over the next few months).
7. I haven't completed a scrapbook since Andy was born...no, my kids do not have baby books!
8. I have several incomplete projects hidden all over the house.
9. Did I mention that I hate cleaning and will use any excuse not to do it???

This post may be considered a little self-indulgent...but what I'm really trying to let you know that I'm not  WonderMom and I'm okay with that.  Personally, I think that ALL PARENTS ARE SUPERHEROES. 

For now the closest I'm going to get to a superhero is my gorgeous friend Melanie who could easily be a lookalike for my favourite superhero, Wonder Woman!

What has Autism taught you? Part Three

A good friend of mine, Kristy, sent me this answer to my question that I asked last month.  I'll let you know that it brought tears to my eyes.  We are so lucky to have so many good friends surrounding us...it helps us get through the tough days.  Keep sharing your thoughts and sending them my way if you feel like it.  It means a lot to us.



Hey you...I have spent a long time thinking over your question about what has Autism taught me...and I think that I am finally able to put my thoughts into words...so here goes.

Autism hasn't taught me anything. In fact, I am more confused by the spectrum now than I was 3 years ago.

Andy, however, has taught me that you cannot define a person with a label. Andy has taught me that the human spirit knows no boundaries. Andy has taught me that children are resilient, strong, determined, stubborn and successful. Andy has taught me the true meaning of unconditional love. Andy has taught me that some things are really, really worth fighting for.

I have learned more from my little buddy Andy about autism than I ever could have from any article or textbook. I have watched this amazing little boy grow, persevere and absolutely smash through the boundaries of this disorder.

Andy's mom has taught me patience, acceptance, love and that knowledge is power. Andy's mom has taught me that she will not be defined by autism, nor will her son. Andy's mom has taught me that she is a fighter and she is someone that I am proud to call a friend and blessed to have in my corner. I am a better person for having you in my life.

I didn't get into what I have learned from watching your amazing husband with Andy...that would be a whole other paragraph I am sure. You two really have (and continue to) teach Simon and I a lot about really striving to be the best parents you can be.

                                                                       

Carly's Voice - Changing the world of Autism

Nobody will ever convince me or John that it's ever too late for Andy.  Nor will they ever convince us that those assessments that say he's severely delayed are the final answer.  Carly is proof that there is so much more to someone then just the label of Autism. 

Remember that April is Autism Awareness month.  It's a month about Acceptance and Understanding. 

Take a moment to watch this video. 

Take a moment to share Carly's story with someone you know. 

And most importantly, take a moment to celebrate Carly and her family's success and joy in finally getting to know each other.

Probiotics – One of the Greatest Contributors to our Health

Probiotics – One of the Greatest Contributors to our Health

One small step for toilet training..one giant leap for Andy!

Yeah, that's right I'm making my own twist on Neil Armstrong's famous line of ""That's one small step for man, one giant leap for mankind."

Many children with Autism have difficulty with mastering (or some even beginning) toilet training.  Knowing that it would likely be a long ride we started introducing toilet training over a year and a half ago...and to answer your question...no Andy has still not mastered it.

At the beginning, Andy was petrified to even sit on the toilet or a potty.  We tried to figure out a way to make it a positive experience for him.  Knowing he LOVES baths, we used to sit him on the potty seat on the toilet while we were running the bath.  This technique actually worked really well. 

We then started to add the potty routine into different times during the day.  Andy was not quite so easily swayed by this new routine.  I freely admit that we resorted to blatant bribery... a mason jar full of  Skittles were the highest reinforcer.  You can only imagine how quickly all of our friend's kids couldn't wait until they were at Andy's house to go to the potty! lol  I actually felt bad when they realized we'd removed it.

Andy was moving along pretty quickly in toilet training and then it seemed to just plateau.  He just stopped moving forward and on many days he was regressing.  Andy used to do everything in his power to avoid the potty.

1. Andy would flop himself to the ground.
2. Andy would run away.
3. Andy would scream...and scream some more.
4. Andy would hit or kick.

This behaviour is indicative of Andy attempting to control the situation.  When he is using this type of behaviour to control it usually means that somewhere along the line Andy has been allowed to slightly change the expectation and get away with less...which means it's time for a shift in power or power struggle for lack of a better term for mommy or daddy.  John & I have talked about it at length and we feel that it was a combination of Andy reacting to me returning to work and several people doing a potty routine their way in several different environments.

This all came about a month ago within two weeks of me returning to work.  The first thing we did to tackle this problem was completely unplanned...one Friday morning when I was on a day off I brought Andy to the potty.  He protested the entire time I was taking him to the potty, he then sat on the potty wanting to continuously flushing the toilet and then screamed at me for 45 minutes!  The kid has lungs. 

During that 45 minutes, I detached the flusher from the toilet so that his stim of flushing could not continue.  I stayed as calm and firm as I could on the outside, even though I was pulling my hair out on the inside.  I placed him back on the toilet every time he climbed off.  I continued to remind him every few minutes that he was expected to go pee.  I occasionally helped him use some of his relaxation techniques like squeezing hands, singing a favourite song or a hug.

The end result...Andy decided (and it was definately his choice) that it was no longer worth all the energy that he was using to fight against the expectation of going pee.  Andy accepted that mommy was not going to change or alter the expectation of going pee.  Andy decided that it was time he went pee...and pee he did!  I cannot believe how much he'd been holding in.  The funny thing is that after he went pee, he looked right at me and had a HUGE GRIN on his face.  He was proud of himself and his accomplishment.  He was quickly rewarded with several cheers, high fives and hugs by mom.

Those 45 minutes were the turning point in Andy's toilet training.  We then decided that consistancy had been compromised that it wasn't doing Andy any favours.  I made up a list of expectations for Andy's Toilet Training routine and posted them in each washroom in our house so that anyone could follow the same routine.  I also requested that everyone, including preschool and IBI, take Andy to the washroom at the beginning and end of each activity or every 30 minutes.  As the weeks went on we noticed a slow but steady improvement with Andy's attitude towards potty training.

Today was the paydirt... it happened during Andy's IBI session.  Here is an exerpt from the IT's session notes:

TOILETTING – while sitting at the table doing programming Andy pointed to the bathroom and said ``Ahhhhhhhhhhhhhhh``, IT presented him with an array of 3 pecs and Andy handed ``POTTY`` to me!!!! (prompted vocal attempt) He jumped out of his seat, ran to the bathroom, and had a successful void :) - AWESOME PROGRESS!

Astronaut Andy reporting for duty!

So maybe toilet training is not exactly equivalent to walking on the moon for some people.  But to be honest sometimes I feel like Andy's challenges that his Autism keeps presenting him is even harder.  Somehow my kid keeps figure out how to walk on the moon...even if it's at his own pace!

JK - Part Four (Case Conference)

Last Wednesday (April 6th) was Andy's Case Conference where he gets presented to the school board in preparation for Junior Kindergarden.  If you're a frequent reader of my blog then you'll know that we've been prepping for this meeting along with Andy's Team for quite a while (JK).

Getting Andy ready to start into the public school system is a new experience for us, not just because he has special needs but mainly because he's our oldest and we've never had to do this as 'parents'.  I'm lucky that I grew up as the child of two parents that we're great teachers and  I, myself, taught French for a year.  So, unlike many parents I am fortunate to already be familiar with a lot of the school terminology, positions and even have access to some great people for resources.

If there's one thing I am not afraid to do is use whatever resources I have access to so I can help Andy.  Prior to the meeting I was able to talk to my mom's good friend, Joanne, who spent almost her entire career in Special Education.  She was able to prep me on what to expect out of the meeting...and even what not to expect!  She guided me on some great questions to ask, including an iPad pilot program that some School Boards are doing.  She referred me to PPM 140 which is a Ministry of Education Document that gives schools in Ontario guidelines for students on the Autism Spectrum.  Both John and I really appreciated her help ahead of time because it made us feel prepared going into the meeting and to be organized ahead of time so that we could take full advantage of the people present at the meeting.

John said that day that sometimes he wonders how we're going to get all the things accomplished that Andy needs to make him successful in school.  Today we were presented with part of the answer...we're not the only ones that are helping him succeed. 

Remember that saying that it takes a village to raise a child?  Well take a look at Andy's village that were present for Andy's Case Conference.

• Superintendent of Special Education
• Principal of Special Education
• System Special Education Resource Teacher (System SERT)
• Speech & Language Pathologist (SLP) from the School Board
• Special Education Resource Teacher (SERT) from his future school
• ABA Program Lead from the School Board (ABA is Applied Behaviour Analysis)
• Kindergarten Teacher from his future school
• Preschool Executive Director
• Preschool Classroom Teacher
• Resource Teacher from Lansdowne Children's Centre
• Speech & Language Pathologist (SLP) from Lansdowne Children's Centre
• Occupational Therapist from Lansdowne Children's Centre
• Family Support Coordinator from the Autism Program at Lansdowne Children's Centre
• Assistant Director from Teach to Learn
• ... and John & myself!

After the meeting John and I had a chance to go out for breakfast and recap the meeting.  Overall, we were very impressed.  We felt that everyone presented a united assessment of Andy's needs and that the School Board really heard what we were saying.  We were impressed at how well run the meeting was and that immediately resources were identified (and permission given) for Andy's school to access them.  We were pleased at the quality of follow-up questions the Principal of Special Education was asking to each profession and then following up with us as the parents. 

While we've never been a part of that type of a meeting, we walked away feeling that we had made the most our time and the rest we needed to wait and see as to what happens next.   We will be waiting to hear whether Andy will be assigned a full-time Educational Assistant (EA) however we feel quite positive that he will.  The good news is that students with similar needs to Andy's in this School Board have been assigned a full-time EA.  We are keeping our fingers crossed...

Autism doesn't have a "look"



What has Autism taught you? Part Two

The following answers are from some of my fellow Mommy Autism Warriors....

Marieke -

I have learned that the label of Autism does not define my child and he is teaching others that the limits others have put on him by their inaccurate perceptions are limitless. That a family's love, acceptance, perseverance and faith has no boundaries. That there is hope and if a child can see that you have hope in them, they will trust you and that trust will see you through on a journey where you are walking hand-in-hand. And lastly, hell hath no fury like a Mother scorned by the Government!

Lindsay -

Autism has taught me to appreciate all the little things that we take for granted. It has taught me patience and perseverance! Never giving up because if I do he will!

Hailey -

Autism has made me a better person in ALL aspects of my life. It has taught me to never give up, and always keep learning.

Julie -
I have learned that people have to have HIGHER STANDARDS for kids with autism: This is lovely but...

I have learned that people have got to STOP judging families: Mrs Judgy McJudgerson

I have learned that people can say very annoying things that turn us mamas into crazed lunatics nice things you say that annoy me

What has Autism taught you?

I posed this question to many friends and family a few weeks ago and was quite interested in the answers I got.  Check this link if you're wanting to see my answer. 

If you haven't answered this question already, then I'd love to hear your thoughts as well.  I'll repost them as the month goes on in honour of Autism Awareness Month.  Here are some of the responses...more to come!

Steph -

Autism has taught me that no child has any limits! Children are unique and amazing. Big ♥ for my Andy pants.

Alana -

That with hope, faith, patience, practice love and determination, even autism can't hold Andy back! I am so happy of all the progress that little man is making! Love u all!

Autism Understanding and Acceptance Open Letter to the World

Awareness is not enough.

We (The Autism Community) need for you to know what Autism is.
We can only achieve that through Autism Understanding and Acceptance.

Awareness of autism has risen dramatically in the past few years, and awareness is certainly a good place to start. Increased awareness has helped parents get earlier diagnoses for their children, and it has helped secure funding for research. However, it hasn’t done much to change public perception of what autism really is.

This is a call out to the world to understand the people and the disorder.
This is a call out to the world to accept the people and the disorder.

You can not understand or accept the people until you understand and accept the Autism they have.

Autism is a part of who they are.

The media has focused almost entirely on children with autism – but children grow up. In a society where one in 110 children is diagnosed with autism (the latest figures from the Centers for Disease Control), no one can afford to ignore the significance of this disability. People with autism are children, teenagers, adults, men, women, scientists, programmers, engineers, unemployed, in care homes… too many of them continue to be bullied, to be judged, or to just be ignored.

Each person is unique. Each person has their own unique set of strengths and weaknesses just like you or I.

The charities, the organizations, the groups, the parents, the people with Autism themselves...we ask you... no, we need you to know what Autism really is.

Today, we ask for your Autism Understanding and Acceptance.

This is what Autism is to me...

Autism is the monster that took our beautiful son hostage.

Autism is what has consumed our family for the past few years when we should be rejoicing without worry in our young family.

Autism is one of the most misunderstood and ignored disorders to the general public (those not affected by Autism).

Autism is my mortal ennemy and I, along with my family, will one day be victorious against!

Autism will not win because although Autism is all consuming, it is NOT Andy.

Andy is love. 

Andy is success. 

Andy is our hero.

Andy is our son.

Nourishing Hope

Today I am getting to participate as a parents speaker at a conference in Mississauga, Ontario with Nourishing Hope. 

As most of you are aware Andy is on the GFCF Diet and I have a goal of making sure that we are not simply eliminating things from his diet but also making sure he is getting as many nutrients as possible into his body through supplements or alternative food sources.  Julie Matthews from Nourishing Hope is one of the few nutritionists that I have found out there that really talks about this balance.

Lucky for me, Julie's in my area for a conference and I've been invited through my Naturopath Dr Sonya Doherty to be join a parent panel.  I am so looking forward to soaking up every bit piece of information that I possibly can. 

What a great way to celebrate Autism Awareness Month!

April is Autism Awareness Month

I have to be honest that before Andy our family did not recognize the importance of this month.  In fact, John & I openly admit that prior to Andy we were ignorant about Autism and all issues related to it.  I think I can now easily say that we've quickly become Autism experts, as every family does who has a family member with ASD. 

About a month ago I asked friends and family a question and I got some amazing answers.  I look forward to sharing over the month however, I think it's only fair that I answer this question myself first.

What has Autism taught you?

Through Andy and his Autism we, as parents, are being taught a whole new outlook on life that we didn't expect to learn.  We're being taught a whole new vocabulary from a language we didn't know existed (IBI, SLP, SERT, PT, OT, stim).  We're being taught that it is up to us as parents to be advocates for not only our child but every child out there that's been taken hostage by the Autism Spectrum.  We're learning that we must stick together and always stand up for what we know as parents is right for our child.

Through Andy, we're learning to appreciate and treasure moments that before we would have taken for granted.    We're learning that nothing compares to the joy in our hearts then when we see Andy master the smallest thing that another child could do without even trying.  We're learning that there are NO boundaries for any child no matter what the assessment or diagnosis says.

We're learning that the love of a family makes anything and everything possible.  We're learning that the love of a child makes every sacrifice worth it.  We're learning that there is truly no greater gift in life that you can give then your love and devotion to a child.