The Story of an Angel

angeloftheisland:

Another year goes by. Our baby girl joined and left us 13 years ago today. Always remembered and loved. This is her story.

Originally posted on An Angel's Island:

The summer of 2002 started out like any other. Everyone was excited for a couple of reasons. #1 Matthew would be starting school in September, and #2 we were expecting our second child. We were in the process of selling our home and trying to find something bigger as the home we lived in only had 2 bedrooms and with a new baby on the way, we definitely needed something a bit bigger.

Our excitement would be short-lived. On July 12 I was scheduled for a routine 20 weeks ultrasound. My sister had missed so much of my first pregnancy as she was attending university away, I wanted her to come to the ultrasound with me. My pregnancy had been great, no morning sickness, no spotting, no need for concern. Of course, I went in myself initially and she could join us after the technician did all the measurements. Things…

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Getting Settled…and a Whole Lot More

Love seeing my boy so happy. It’s like his first trip to summer camp, a new job, and Disney World all combined into one for him. Thanks Matt for letting me see the beauty of the simplest things through your eyes. The friendships you share, the outdoors that you love so much, the animals that are like your own and the joys you find in everything you do. You make me stop and appreciate things I always took for granted. I love that you share that with me and thanks for introducing us to such a wonderful group of people who have your back. You’re truly blessed.

That was my Facebook status last night after coming home from Two Rivers Wildlife Park and nothing could be more true.  I am truly in awe watching my son in his Happy Place.  He has spent every night except 2 staying in his trailer since it arrived on site 13 days ago.  This is certainly much more time than we originally thought he would be there overnight.  He’s been doing well and there have been minimal issues so we’ve just been going with the flow.

I’ve always been eager to share Matthew’s successes and advancements.  I feel I’ve been equally as forthcoming with his challenges.  I try to keep it real.  It’s not always about the sunshine and roses.  If I want to educate and advocate it can’t be all good all.the.time.  You have to know about the bumps.  You have to know about the hurdles.  You have to know about the lessons that bring him (and us) past the bumps.  These past couple of weeks have certainly seen many lessons.  And I think that’s what makes the successes so much more magnified.  Working beyond the hurdles and finding a way to turn them into teaching moments (that we can all learn something from) can be a challenge in itself at times but if this is going to work we have to be open to the bumps and be willing to learn what they have to teach us.

Fact:  Matthew has very little concept of time and money.  We have known this for years.  It has been a permanent issue on his IPP(IEP) for as long as I can remember.  I’d be lying if I said there has been major advancement in these areas.  He just doesn’t get it.  Two hours for Matthew may as well be 2 days.  $20 could be $2 or $200.  I can remember when he was younger; we used to try to explain time to him by comparing 30 minutes to an episode of Sponge Bob Squarepants.  That was all well and good until the tv show started doing 2 15 minute episodes/show.  Then it turned into whether we were talking about a ‘short’ Sponge Bob or a ‘long’ Sponge Bob and that 2 short ones was the same as 1 long one.  We tried egg timers, we tried counting down (15 more minutes, 10 more minutes, 5 more minutes, 2 minutes to go…) but then it was still hard for him to transition to another task.  If Matthew had to be to work at 9:00 and he looked at a clock (ha ha ha) and saw it was 8:50, that would mean nothing.  He wouldn’t comprehend that he best get on his way down the hill because he only has 10 minutes to make it in time.  How was this going to work if he was staying at the trailer by himself?

Issue 1:  We could send a text but sometimes he doesn’t see them for hours so Mike decided to teach him how to turn the alarm off on his phone.  How important it was to get up when the alarm went off couldn’t be stressed enough.  Mike set an alarm for when it was time to get up and set another for when it was time to head down the hill.  In between it was time to get breakfast, his cup of tea and get ready for work.  This was fine and dandy until Sunday night when we were home and he was there and we found out he was working a later shift Monday morning, but his alarm was going to go off for early shift.  It wasn’t worth trying to get into deleting the alarm over the phone.  The joys of it all.  We managed and so did he.  At the end of the day that’s all that matters.

Issue 2:  The first week, Matthew wanted to experience everything he could all at once and he wanted time to just stop; especially in the evenings.  Sitting around the bonfires has easily become a favorite part of life at the park.  You know yourself how quickly time can get away from you when you’re sitting around a campfire enjoying yourself.  Matthew has always needed his sleep.  As a youngster, 12-13 hours sleep was a regular night – once he fell asleep.  Even through his teen years 10-12 hours/night wasn’t out of the question.  He’s been going on less the last year, for sure, but he still needs a couple of days/week that he’s able to recharge.  He wasn’t giving himself that chance at the park.  He went and went and went and a week in he crashed.  Every night we’d tell him at his normal ‘heading to bed’ time to get going he was still doing his own thing up to 2 hours later.  It caught up with him fast.  Physically, he was exhausted and his body started to let him know that in a big way.  After a couple of days at home he was much better and went back to the park a little wiser (I hope).  This is something that we have all encountered before.  Matthew is 18 and we are his parents.  What do we know?  Certainly not what’s best for our 18 year old son.  Pretty much the same as what did our parents know when we were that age.  We had to learn the hard way, as did/will he.  It just reiterates that he needs a couple of days every week to be home and well, just be.  Staying at the park is wonderful for him and an experience that will benefit him in more ways than one but he still needs that time away from it all, as well.

I can remember when Matt was in grade 8.  His teacher was hell-bent on throwing Matthew to the wolves so he could become independent.  That was her only goal as far as he was concerned.  He had to start showing some independence.  All supports that were put into place for him were withdrawn and he was pretty much left to fend for himself.  Left to be independent.  She was going to work miracles with him and use him as her example.  He had the ability and she felt (without out and out saying so) that he was being coddled.  She soon found out that he was not, in fact, being coddled; he was being supported.  Supported because there were many areas he was unable to execute the skills necessary to be independent.  (Can you tell this word and the connotations she attached to it really annoys me?)

INDEPENDENT can be defined as – not depending on another for livelihood or subsistence.
“I wanted to remain independent in old age”
synonyms: self-sufficient, self-supporting, self-reliant,standing on one’s own two feet

“her grown-up, independent children

Is anyone truly independent?  This definition doesn’t specify whether the “another” is a person or thing.  If we looked at it applying to depending on both another person or thing, how can any of us say we are independent?

I could go back as far as Maslow’s Hierarchy of Needs.  We all have needs.  We depend on certain things for livelihood and subsistence.  Our basic (physiological) needs are air, food, water.  Once these needs are met we have others:  safety and security, love and belonging, esteem, and finally self-actualization.  We may find ourselves at different levels on this pyramid at many times through our lives and we may never meet the need of self-actualization or if we do, something may happen to see us revert to a lower stage and need to start building again.

My point is – none of this can be done independently.  We all need other people and things in our lives to survive and be successful.  We need the basics (food, water, air).  We need to feel safe and have shelter, we need to be loved and feel as though we belong, we need to feel good about ourselves and others, and finally there is a need to feel that we are the best that we can be.  Not everyone successfully reaches all these needs, like I said, and it would take me much too long to get into the philosophies behind it all but suffice it to say that we all need at least the first 3 levels of needs to be met just to survive a comfortable existence.

I can’t imagine achieving any of this independently.  I depend on air.  I depend on food, I depend on water.  And that’s only the beginning.  I depend on knowing what time it is so I can get to my job, I depend on my job so I can collect my paycheque, I depend on my paycheque so I can pay for food and water and my home, I depend on food and water to keep me alive and I depend on my home to keep me safe.  All of this depends on me knowing what time it is.  By me knowing what time it is my 2 two primary needs are met.  Then I have to understand the concept of money so I’ll know if I have enough to pay for the food, the water and my home.  See where I’m going with this??  I certainly wish Matthew’s grade 8 teacher did.

We are all interdependent.  Period.  Yes, some of us are more self-sufficient than others but none of us are truly independent.  We all rely on something or someone.  I may have exaggerated the definition somewhat for the point of illustration but when you get right down to it, it is what it is.  Matthew’s understanding of time and money are crucial components to him being able to have his needs met (according to Maslow).

Ok, I’m done with my tangent.  This has been what it’s been like getting him settled.  There have definitely been more successes than challenges.  He’s keeping the trailer spotless, he’s very comfortable, it took him no time at all to have it feeling like ‘home’, and most importantly – he’s happy.  They say a picture  speaks 1,000 words?  Well, almost 1800 words in why don’t I finish off with a picture of Matthew that speaks 10,000 words to me.  This is one of the most genuinely happy pictures of him I have ever had the pleasure of taking.

Matt and Maggie

Until next time…

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Local Businesses & Community Groups Step Up for Matthew and Two Rivers

idea

Four months ago we knew the summer was approaching fast and we had to try to find summer work for Matthew.  We knew where he wanted to work but the funding had to be there for that as Two Rivers Wildlife Park is a local not-for-profit organization that relies on community support, government funding and the hard work of many volunteers to remain the successful oasis that it is.

We found out many of the summer grants had an application deadline date of February and we had missed out.  EmployAbility Partnership was all set to get him into a program until they realized he was still going to be a student at the end of the summer.  Their programs are geared towards those who have completed school.

Four months ago we came up with an idea.

What if we could get a local business or service group to come on board and sponsor Matthew at the park for the summer?  With over 1,000 hours volunteered at Two Rivers Wildlife Park he had certainly proven he is committed and dedicated.  If he wasn’t able to gain employment this summer we’d have to try other avenues as he needed some type of income.  The cost of fuel, the clothes, the footwear, the mileage on the vehicle; it was all adding up quickly.  And he deserved to get some type of remuneration while doing something he loved.  Matthew had totally gone above and beyond over the last year ~ even surpassing any expectations his father and I had set for him.  His achievements just kept on keepin’ on.

We knew he was going to be spending his summer at Two Rivers with or without a pay cheque.  He would easily turn his 1,000 hours into 2,000 or more by this time next year.  As a family we decided to forego any  summer plans away from home so we could be here to make sure Matthew got to and from ‘work’ daily once school finished up in June.  It’s the middle of the winter and he’s already talking about how he can’t wait for this summer so he can spend all his time out there.

How could we make this happen?  Well, I guess we could try doing what we do best.  We write.  We tell stories.  People were introduced to Matthew and Two Rivers earlier when my blog post An Open Letter to Families in Cape Breton and Beyond was viewed over 13,000 times in a number of days.  The feedback was amazing.  Local media wanted to tell our story.  We were introduced to people near and far who shared Matthew’s passion for animals and for Two Rivers.  We also heard from many families who live with autism who wanted to share their loved one’s stories.  The buzz that our story generated showed us that people cared, that people were interested and that Matthew was doing as much good for Two Rivers as Two Rivers was doing for Matthew.

With all this in mind I sat at my laptop one Saturday morning and started to develop a proposal that would hopefully find its way to a local group or business willing to form a partnership.  This partnership would directly impact Matthew and Two Rivers Wildlife Park.  Indirectly it would benefit the thousands of people and families that visit the park as well as the group or business we would partner with.  Our partner would see first hand how their contribution would allow this young man to pursue his dream of a possible livelihood at Two Rivers.  Matthew has much knowledge to share and now very eagerly awaits his opportunity to teach complete strangers that visit the park all he can about his world beyond the front gate.

One idea we had for our partnership included a local business donating a trailer that could be placed on the grounds of Two Rivers allowing Matthew to stay a few nights/weeks.  This would allow him to gain independence as he would be away from home but still be in the company of park employees who live within the park’s perimeter.  Travel expenses would dramatically decrease as transportation costs would be cut in half on the days he’d spend overnight.

Our proposal included a copy of Matthew’s hours to date as well as a map view showing the distance between our home and Two Rivers.  Also contained was a collage of pictures showing Matthew on site at the park, at our local volunteer fire department where he is also a member, our family participating in 2 fundraising walks for our local autism society, and Matthew receiving his PEERS certificate last year as he successfully completed a program designed to teach those living with autism how to successfully make and keep friends.  To finish off the package we included a copy of the Cape Breton Post article which told the story of Matthew completing 1,000 hours of volunteer services.

Before we ventured on our way, we showed our package to a few people who gave us a big thumbs-up.  They felt we had done an excellent job outlining our request so early one morning Mikey went on his way with a duo tang containing our proposal for each business and group we wanted to start with.

What happened next was nothing short of amazing.  Mike phoned me at work and told me that he had just dropped off our package with the manager of Stones RV in Sydney.  Tom Buffett briefly skimmed though our proposal as Mike gave him the Cole’s Notes version of why he was there and within that 10 minute encounter Mr. Buffett showed great interest.  Of course, being the middle of the winter he would have to wait until the spring to see what he would have available.  He would also have to speak with his head office in New Glasgow but he didn’t see any reason why he couldn’t find something for Matthew.  Good grief, Charlie Brown…what just happened??

Over the next couple of months we eagerly sat tight on this news and worked out the logistics of this possibility with Two River’s manager, Johnny Huntington.  He was thrilled with the idea that this could happen and started planning a location and setup scheme that would see that Matthew’s needs could be met if he were to take up temporary residence during the summer.  There were a lot of factors to consider and thankfully we had a team willing to make sure that if this became reality it would be a successful venture.  Matthew would know nothing about this just yet.  We wanted to make sure this could really happen before we shared the news with him.

To add to our excitement and to help pass the long winter months, Matthew had quite the honor bestowed upon him on April  21.  He was nominated for and subsequently received the Cape Breton Regional Municipality’s Youth Volunteer of the Year Award.

Award pic

What an amazing evening this was!  To see his many hours of volunteer service recognized on such a level was truly humbling.  Not that Matthew has done any of this for what he would get from it, but in turn it has showed him that by working hard you can achieve great things and be recognized for dedication and commitment.   Achievement takes on many forms.  Everyone has challenges and everyone excels at something.  Whether it be academic success, athletic success or humanitarian success to name a few, everyone has something to contribute.  Finding your path in life is sometimes easier for some than others but I truly believe that everyone has something to contribute.  When a passion and a love leads you to finding your place it’s definitely a bonus.  During the short time that Matthew has been involved with Two Rivers Wildlife Park, he has found his place.  He has found his calling.

As the calendar pages changed the time was getting closer and closer.  Mike touched base with Mr. Buffett at Stones RV and plans were set in motion.  They would deliver and set up the trailer, we would have a sign made and displayed next to the trailer showing Stones RV was a proud sponsor of Two Rivers (big shout out to the Cape Breton Regional Fire and Emergency Service Training and Prevention Divisions for covering the cost of the sign), and Stones RV would be tagged on all PSA announcements run on 3 of our local radio stations throughout the summer.  Thanks to The Cape 94.9CJCB and 98.3 MAX FM for coming on board with this project and being such a huge supporter of Two Rivers and Matthew.

Finally, the day arrived.  Yesterday turned into a flurry of activity as the trailer was delivered and everyone was sitting around waiting for me to get off work so we could take Matthew up and give him his surprise.  Unfortunately, Mr. Buffett was not able to stick around as he had other deliveries to make but I am hopeful he’ll be able to visit Matthew at some point through the summer and that the pictures showing Matthew’s excitement will make their way to him at some point.

As park employees began to gather in the trailer we heard the tractor approaching.  My heart was ready to burst from my chest.  When Matthew got out of the tractor and came around the corner I opened the door and of the trailer and said “Welcome home.  How do you like it?”  Once he realized what was happening, that this trailer was for him, the look on his face said it all.

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After standing there spellbound for a few minutes the guys inside yelled at him to come see the inside.

4

With a grin from ear to ear we showed him the layout of the trailer and explained all that had gone on to make this happen.   I don’t think I ever heard the words “Thank You” so much in my life.  His excitement was palpable.  A quick trip home to gather up some necessities gave him a chance to process the enormity of all that just happened.  It certainly didn’t take him very long to settle in and have the place looking like ‘home’.

outside view tiny garden the matt cave

With his first night under his belt I can’t wait to hear how he got along.  There will be a transition period for sure, but with the help and commitment of his friends at the park I can only predict that this will be a summer worth remembering for Matthew.

Everyone reading this needs to know that this happened because of the enormous support shown to Matthew by the local business and groups I have mentioned above.  It truly does take a village to raise a child and we have certainly been very fortunate to live in a wonderful community that has stepped up to help Matthew achieve the dreams that were so close within his reach.

And for the icing on the cake, saving the best for last, Matthew’s volunteer hours will be declining by 40 hours/week effective July 1st.  Why is this the icing on the cake, you may ask?  Well, let me tell you; for the next 8 weeks Matthew will be a true, bonafide employee of Two Rivers Wildlife Park.  They successfully applied for a grant that would give Matthew his first job ever!

For some kids, their biggest dream is going to Disney Land.  That was never a dream of Matthew’s.  It would be the total opposite for him – not enjoyable at all.  The crowds, the congestion, the rides, the hustle and bustle; that’s not him.  His dream is Two Rivers Wildlife Park.  A gem of its own right here in our community’s back yard.  Hopefully you and your family will have the opportunity to visit the park this summer and see for yourself why this special place is our son’s equivalent of Disney Land – Two Rivers is his Magical Kingdom.

Until next time…

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Dreams DO Come True

two rivers

“one year ago I walked in to the doors of TWO RIVERS WILD LIFE PARK. as some one with a dream. and that dream was to help out the critters at the park by becoming a Volunteer. see I love animals so I thought that would be a great place for me and I was right on so may levels. I learned so much and done so much. and made so many friends. I have some NEWS that I’d like to share with every one that’s been following my story. As of July 1 I’m no longer going to be a volunteer at two rivers . . . . I GOT MY FIRST SUMMER JOB AT THE PLACE I LOVE MOST. July 1 I’m going to be the newest STAFF MEMBER OF TWO RIVERS WILD LIFE PARK!!!..i’d like to thank my mom and dad and Johnny Huntington for making this happen!”  ~ Matthew Hilliard, May 19, 2015

Pretty much sums it up, doesn’t it?

By the time July 1st rolls around Matt will have just about, if not over, 1400 hours under his belt volunteering.  It’s the next 320 hours that will be making him gleam.  Typing that seemed funny.  A mere 320 hours compared to 1400.  There are just over 4 groups of 320 hours in the 1400 that he’s completed in almost 14 months.  Averaging 100 hours/month plus school, plus his involvement in the fire department.   Seriously, that makes me shake my head.  A lot of hours for someone to dedicate.

Now he will be able to say that his first job, his first real, paying job is where he said it would be.  It will be exactly where he wanted it to be since he was a little boy.  I think that’s quite an accomplishment in itself.  Actually getting hired at the place where you hoped and dreamed to work many, many years before.  Imagine that.

Can you or I say that?  Some can, but I suspect it’s not the majority.  The only other person that I can remember actually doing what she said she was going to do with her life from the age of 5 is my sister.  She was going to be a nurse and she never swayed from that for one minute.  And one helluva nurse she is.

As nursing was and is a passion for her, wildlife has always been a passion for Matthew.  Maybe they are 2 people who truly followed through with their dreams regardless of the hurdles.  I couldn’t imagine going through the years of university and training and long hours and horrible shifts and awful circumstances that my sister encountered over the years.  But she wouldn’t trade it for anything.  She continues to better herself, she’s constantly reevaluating her goals and making sure that she remains on top of her game.  She loves her career and anyone who knows her or has been in her care will attest to that.  Her’s isn’t just a job, it’s a calling.  A calling that she followed from the young age of 5 years old.

It’s not a whole lot different for Matthew.  He’s not years into his career yet like his aunt is but the enthusiasm and determination that I saw in her all those years ago is being mirrored by him now.  She proudly displayed her candy-stripper’s uniform as she volunteered at our local hospital many years ago as eagerly as Matt wears his Two Rivers Volunteer shirt and hat today.  As humbly and professionally as she carried herself through the hospital corridors he now walks the grounds and trails of the park.  The similarities between the two are quite amazing as I sit here and think about it.

And perhaps this is all what makes it so easy for Mike and I to do whatever it is we can for Matthew to help his dreams become reality.  Mom and Dad certainly went above and beyond for both Allana and I but with her going away to university and needing to fulfill her dreams hours away from home it was a little (ok, a lot) more challenging for them with her than it was with me.  I stayed home to go to university and let’s face it; the costs associated with my degree and her degree where at opposite ends of the spectrum.  While we both did our part contributing to our education by getting the necessary financial assistance that we could it also required the less-than-glamorous summer jobs of doing whatever we (or Dad)  had to do to make it all happen.

I watched as my parents did without and scrimped and saved to give each of us what we needed because they saw the desire, especially in my sister, for her to “be” something.  And not just ‘something’.  A nurse.

She wanted to make a difference in people’s lives.  She learned how to help people through birth, death, illness and recovery.  Life.

Matthew’s passion isn’t that far off track from my sister’s.  He has witnessed birth, death, illness and recovery, as well.  With animals.  In less than ideal conditions.  He’s learning his craft through hand’s-on experiences.  While he may not go to university or become a veterinarian he is certainly following in her footsteps.

 The similarities can even go as step further as they both share another life-long dream turned reality in that they are both volunteer firefighters.  My sister celebrated her 5th birthday with a firefighting themed birthday party and as soon as age permitted, she was accepted as a member of the fire department that saw many family members before and after her commit their time to.

This certainly isn’t the angle I expected this entry to take but the more I wrote and the more I thought of the parallels the more blown away I became.  Why didn’t I put all this together before?  It’s really freaking me out as I sit here.

I’ve watched my sister embrace her dreams, get a position in her field and work her way up.  Even though it’s been and taken her years, it seems like it was just yesterday that it all started for her.  All I can hope for Matthew is that his first summer job is the beginning of as many years of enjoyment in a position that he loves as much.

I’ll keep you posted.

Until next time…

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Memory Lane

When you start on a journey you never fully know where you’re going to end up or what you’re going to run into along the way.  There could be hurdles and obstacles that make you reevaluate your route and then there can be parts of the road you’re travelling that show nothing but sunny skies and clear pavement ahead.  And that’s certainly the way it should be, I think

My Mom and Dad always taught me that nothing worth having comes easy.  How true those words are.

I’ve spent some time over the last couple of weeks reliving our journey.  I’ve done something that I haven’t done in a long, long time.  I reread my blog.  I started at entry number one and I’ve laughed and cried and laughed and cried again.  I didn’t realize how much I had forgotten; how much has happened over the last 8 years ~ well, 24 years, really.

I had the opportunity this past week to have two very in-depth conversations with two people from different areas of my life.  I value them both more than they realize, as each has had such a profound impact on my life.

One goes back to the days before Mikey and Tracey were married.  She saw us sit in her living room for nights on end over many years.  We talked our way through hard times and good times and times we’d rather forget all about.  Many nights we were sure she was the only ally we had.  She definitely is one person who has seen us at our lowest but has been there to watch us climb to the top of some very high mountains.  We chatted about that in great detail recently.  Who would have thought 25 or 26 years ago that this we call life would have taken the twists and turns that it has?  I remember being a very young, naive  girl sitting in her living room.  If she had a crystal ball that she could have looked 10, 15, 20 or 25 years into the future and we could have seen what paths we were going to travel I think I would have laughed in her face and taken off for the hills.  Even though there were a few years that saw our friendship sit simmering on the back burner, I always held a special spot for her in my heart.  It’s hard in this day and age to find truly genuine people and we are so fortunate to have had the chance to rekindle our friendship with her.  It’s like nothing has changed, but so much has.  I am certainly not the naive young girl I once was.  Outside of our immediate family, she is probably one of the few people who have been there through all those years to witness Mike and Tracey develop into Team Hilliard and all that has come with it.

The second person I had the chance to chat with recently has walked a long part of our journey with us but in a much different way.  I had talked with her on the phone many times before we actually met face-to-face.  She was a professional involved in Matthew’s life.  Her decisions, her involvement had a great impact on Matthew’s academic life.  We were new to the world of autism.  We were new to the world of dealing with a special needs student in the classroom.  We were again, very naive.  We didn’t know anything.  TA’s?  Modifications?  Adaptations?  IPP’s?  Psych-ed assessments??  What??  Our heads were spinning.  I learned very quickly that I had a lot to learn.  Mike called her, I called her and we asked questions.  More questions than we probably should have but it was the only way we were going to learn.  Then one day, when push came to shove, I had to go and meet her.  I’ll never forget it.  Mike had to work and there was no way I was going to talk to a ‘professional’ by myself.  So I enlisted the help of my Daddy.  I didn’t need him to come to talk, I just wanted someone else present.  Someone to be there so I wouldn’t be intimidated.  Yes, she was great on the phone but face-to-face in her office I was worried that being on her turf it would be her way or the highway.  So in Dad came, and let me tell you, I couldn’t have been more wrong about how I thought that meeting was going to go.  She was kind, she was compassionate, she was genuinely concerned about Matthew, about us and our well-being.  There were decisions that had to be made concerning Matthew’s transition to a new school and at the end of the meeting I had heard what I thought I wanted to hear but I had to be sure.  I said to her that I had to go home and tell Matthew something.  I wanted to hear from her what exactly I could go home and say to him.  She stated, emphatically, that I could go home and tell Matthew that what he needed to happen was going to happen and would stay in place as long as he needed it to be in place.  This lady changed our lives.  She was there, at that new school, to meet with Matthew on his first day, she continued regular follow-ups, she took the time to get to know him and us and she learned what made him tick.  She, without a doubt, saved him.  He didn’t fall through the cracks, he didn’t miss out on anything he needed to succeed and she made sure she kept informed as to his progress.  She was (is) my ‘academic world’ angel.

As with our first relationship that I spoke about, there was a period of time that life went on its way and we didn’t need to be in such constant contact with this angel.  That certainly didn’t  prevent me from touching base with her a couple of times through the year to let her know how Matt was dong and what accomplishments he’s made.  She was always so thankful.  I was of the mindset that I’d be the first to pick up the phone or email if there was an issue, so why shouldn’t I be as quick to communicate when all was well, too.  I know she appreciated it and I was just as appreciative to be able to relay to her when all was going well.  A few years back I told her that when the day came for Matthew to walk across the stage to receive his high school diploma, I wanted her to be sitting right beside us.  She played such a huge part in his schooling.  Well that time is quickly approaching and when I was talking with her this week I reminded her of this.  I couldn’t help but smile when her response was “I’ll take the Kleenex.”

These two people have had a vested interest in our family over the years.  I wanted them to be there to see Matthew after he received his Youth Volunteer of the Year Award from our municipality this week.  It wasn’t just about Matthew or our family.  There are many, many people who have been an integral part of our journey and they should be able to celebrate that as well.  Mike and I never could have done this by ourselves.  We never ever would have gotten through some of our darkest days without so many people that have come into our lives.  Our family, our friends and those people who helped and became friends.  Because of Matthew we have been blessed to have so many people enter our world.  To try and name them all or talk about them all here would be next to impossible but as I relived the last number of years this week these two people, in particular, stood out in my mind.

Although, due to circumstances beyond their control, neither were able to see Matthew this week, their hearts were with us.  So many others were able to watch our boy receive his award from afar.

If I have learned anything from this little trip down Memory Lane I have realized that I truly appreciate the impact that every one (and I mean every – single – one) involved in our lives over the last 24+ years has had.  We’ve crossed paths for a reason.  And you have all helped mold me into the person I am today.  The struggles, the joys, the laughs, the tears ~ some of these I have experienced with many of you.  You have seen us through many different facets of our life and it is my hope that you will continue to be there for many more.

We have to all cherish the time we have with those closest to us and be open to let those in that we don’t always think will end up being vital.  Sometimes it’s the people we least expect to have such a profound impact on our lives that end up making the biggest marks on our heart.

To the two ladies I hold close in this post, I thank you.  I don’t know if you’ll ever even read this ~ that’s not why I’m writing it anyway, but I need these thoughts in print.  You have been there for us.  You have especially been there for me.  I will never forget that.

Until next time…

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Window to Our Hearts

** I originally wrote this almost 5 years ago but I’d like to share it on this first day of Autism Awareness/Acceptance Month.

***Sorry it’s double-spaced I don’t know how to fix my format so the Enter Key just single spaces :(

Window To Our Hearts

He looked at me tonight and asked

“Why was I born this way?

“Why do I live with autism,

Each and every day?”

My heart sank to a place

It’s never been before.

I prayed for words to help me

Because I wasn’t sure.

“Why do you think the grass is green?

And why is the sky so blue?

Why do leaves change colour each fall

And then next spring grow new?”

“That’s easy, Mom,” he said to me

“I’ll tell you why it’s so.

Our eyes are windows to our hearts

Where our love will grow and grow.

If we couldn’t see the grass turn green

Or the sky light up so blue

We’d never take the time to see

The beauty of our world so true.”

My heart soared to a place

It’s never been before.

I had the words to help me

And this time I was sure.

“Autism is like the grass and sky

And leaves that turn each year

It makes us take the time to see

Another beauty that’s so near.

Each of us is different

And we all have much to give

Our eyes are windows to our hearts

Where the love within us lives.

Like the grass is green

And the sky is blue

And leaves turn colour each fall

Autism is a beauty lying within you.

You see the world so different

Through your eyes so pure.

That window to your heart

Has taught me much for sure.”

I looked at him tonight and said

“I know why you were you born this way.

You live with autism to show the world

How to love each and every day.”

Tracey Hilliard

Oct 22/10

Autism Awareness

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Please Don’t Bash Others ~ Regardless

I read an article today from a fellow autism-mom that made my heart sink.  I don’t know her personally and I’m sure there were reasons for her post, but regardless, it made my skin crawl.  It hurt me and it angered me.  I really don’t want to encourage anyone to read it, but in order to get the point of my feelings you may feel the need to skim it here.

I couldn’t just let it be.  All the high-five’s and kudos she was getting from other autism mom’s and family members wasn’t the way I felt at all.  And while I may be in the minority, I had to tell her how I felt.  I did send the following to her, privately, and as of this posting time I have not received a response.  I’d like to share it with you now.

Hi Shanell. We have not communicated before although I have been following your page for a while (I don’t comment a lot on pages).

Please understand that as a fellow Mom who lives with autism in my world I respect every word that comes from your mouth (as I hope you would do for me). I must say, however, that today I did not agree with you. Today I shed tears of hurt, disappointment and shame when I read your article titled ” Somebody Living with Autism Wants You to Read This”.

Allow me the opportunity to explain. Autism has been a part of our life for 18 1/2 years. My son, Matthew, lives with aspergers syndrome. We did not hear the word ‘autism’ until he was 8 years old, although we always knew there was something. At first, we attributed his ‘quirkiness’ to being an only child. He didn’t know how to play with other children because he didn’t grow up around children his age. He was thrown into a world of adults from the get-go. He was an old-soul in a young body. When he started school he was happier by himself, he became agitated when he was asked to share, he didn’t care about ABC’s and 123’s; he was an outdoor’s boy who just wanted to explore. He fell behind academically from the beginning. At first he was diagnosed with ADHD and thankfully, a mild medication allowed him to focus and get through the remainder of his school year. There were still concerns surfacing the following school year which were answered after a series of psycho-educational testings. A nonverbal learning disability showed us why he was having issues with printing, fine and gross motor skills and transcribing. Modifications and adaptations to his curriculum helped but there were still yet many unanswered questions. Privately, he was diagnosed with ASD, specifically, aspergers syndrome. He was in grade 3. What the heck was ASD? I knew nothing about it, I knew no one who lived with it and all I could think of was “Rainman”. That was my introduction to autism. I was alone and afraid and angry.

To say I lived, breathed, ate and slept autism from that moment on was an understatement. Not only did I have to educate myself, my husband and my son but I also had to educate those family members and friends closest to us. We were it. We were the only ones in our circle to have autism affect us. No one knew anything about it. I made it my mission to learn everything I could and then it became our way of life, but not before many trials and tribulations (some of which we all still live with to this day).

My parents (my father in particular) were very old school when it came to children and disciplining them. My father had a hard time wrapping his head around Matthew and his ‘quirkiness’ and then accepting the fact that his ‘quirks’ had a name. It was hogwash and he just had to be disciplined. I searched and I searched and I searched for something – anything- to be able to show my father to help him understand. It wasn’t easy. He was a hard guy to sway. However, eventually I did find an article and from the moment I started reading it, I knew it was the one for him. It was specifically for grandparents and I only wish now I had saved it. He got it. He finally understood that we were not allowing Matthew to behave in a certain way or that he just needed a good talking to. My Dad finally got that Matthew was this way because that’s the way he was. Point blank. It wasn’t a bad thing, it wasn’t a good thing, it didn’t make him any better or worse than other children, it just was. Period.

Is it that easy with everyone who doesn’t understand? Of course not. Are there those who are ignorant (in the negative sense of the word) and who are unable to understand the voice of reason and education? Of course there are. There are no amount of articles, no amount of statistics, no amount of educating that will enlighten them or make them understand – and that’s because they are closed minded individuals.

We want our children to be accepted. We want them to find their rightful place in this world and we want for them what any parent wants for their child.

We don’t want them bullied, we don’t want them ostracized, we don’t want them disrespected and we certainly don’t want them to be made to feel as though they are any less of a person. At least I don’t want that for my son.

Why was it ok for you to feel as though you could bully, ostracize, and disrespect another human being today? I know your article didn’t specify anyone in particular, but even so, in general terms, why do you think it was ok for you to do what you are so set against others doing to your child?

In my mind, every good article, every good, positive form of advocacy that you have shared was totally negated today by your harsh words.

Yes, we all get frustrated, yes we all get angry and want to bang some people’s heads up against a wall and yell at the top of our lungs to stop being so mean and cruel and disrespectful but to call out a population today the way you did that will never care anymore about Kate or Matthew or the millions of others that we stand beside who live with autism did more to hurt you (in my opinion) than it did to help Kate, Matthew and all the others.

Sure, there are oodles of people on your FB page and on your blog applauding your words because they too felt the way you spoke of hundreds of times and are thrilled that you lashed out because the people you lashed out on are the scum of the earth because they couldn’t care less about ‘getting’ our kids or the lives that we live. And at first I thought “Wow, she’s having a bad day, what a shame.” But then, the more I thought about it the more upset I got.

What did you accomplish today? Did any of those vile individuals message you to apologize for their ignorance? Did they offer to learn more about living with autism? Did they offer to spend time with your family and understand the world according to Kate? Did you feel relieved and like you proved something by attacking others with you words? I’ll leave that for you to answer, as I truly have no idea.

We all deal with things our own way and I’m not saying your article today was right or wrong for you. It was obviously something that you felt you had to do. I just wonder how many others out there read it, like I did and thought it was nothing more than hypocrisy.

Your article did do something positive for me. It showed me that the way I advocate for those living with autism works for me. It showed me that making another human being feel belittled and “less, not different” is not the way I want to live my life or show my son how to deal with things. I’m thankful that when Matthew reads my blog in years to come I don’t ever have to worry about him asking me why I was mean to those who didn’t know any better. I’m thankful that I can continue to advocate in a positive light and after many years of dealing with ignorance that I finally realized that those people will not change regardless of what way I try to approach them.

So, while at first I shed tears, as I finish these words I realize that I shouldn’t shed tears, I should just continue to do what I am doing. I truly hope you will get to that point sometime. It’s hard with a young child, and although the teenage years pose a whole new set of issues, I am confident that Matthew is finally finding his way in the world and making many of those paths as he travels them.

I wish you well and look forward to continuing following you and your family on your journey, I just had to say my piece even though it may not be among the views of the majority.

With much respect,
Matthew’s Mom,
Tracey

Until next time…

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