Letter to William

Dear William,

I’m writing this to you even though you can’t read yet. Maybe you’ll see this someday – maybe you’ll read it to me.

Did you know that every time I look at you, my heart just about bursts because of how much I love you? Did you know how breathtakingly beautiful you are no matter how messy you get? And that your daddy and I still can’t believe what a gorgeous little miracle of a person we’ve produced?

You’re three years old – turning four next week. You still can’t talk much and you aren’t all that keen on toilet training. This is because you were diagnosed on the autism spectrum just over a year ago. Right away, your dad and I started to figure out the best thing we could do for you. Your name went on the waiting list for Queen Alexandra’s program and you started treatment with a private agency in the meantime.

During the year that you waited for a place at QA, your nine hours per week of therapy helped make some small improvements. But throughout the course of that year, you made no progress with toilet training and learned perhaps three or four intelligible words. That’s not your fault and it wasn’t your teacher’s fault. You just weren’t getting enough time with her to learn what you needed.

Your dad and I were overjoyed when Queen Alexandra finally had a place available for you. You started there September 3rd of this year – we were so excited for you!

Even after two weeks, I could see a change. You started to talk to us, putting two and three words together in short sentences. You’re also starting to use the toilet without having a screaming meltdown (at least not every time), even if you do still like to poop by the front door for some reason. I’m sure I’ll laugh about that one day.

You can now wave back when someone waves to you – and today when your teacher left our house, you said, “See you tomorrow!”

If you are reading this letter, William, you’re probably thinking, “Big deal.” But trust me – it is a big deal. I was starting to think you’d never talk at all.

I know that it’s because of your teachers at Queen Alexandra that you can do these things. I also know that if we lose this program, there’s a good chance you may return to being a lonely, frustrated little boy and then my heart will break.

There are only two years left before you start Kindergarten, little one. You’ve no idea how much sleep your dad and I are losing these days, how often I cry out of sheer frustration and fear. The thought of you going to school and feeling isolated, angry, maybe being bullied and unable to keep up with your classmates is just unbearable to me.

I want to keep you safe forever, but I also want you to be able to make your way in the world. One day, I won’t be around anymore and then you’ll need to be able to survive on your own. Good thing you have a little brother who worships you.

The one constant thought in my head these days is that the whole rest of your life will be affected by how well your autism can be treated now. Those are some pretty high stakes.

That’s why I’m fighting so hard for you now, trying to keep your school open. You deserve the best treatment and as much of it as you need. Your dad and I are going to move heaven and earth for you and if we still can’t save your school, then we’ll find new teachers for you who you’ll love just as much.

I hope by the time you may be reading this that you can tell me how the story ends, and that it’s a happy ending. Either way, I love you so much I almost can’t stand it sometimes. I’ll never give up on you, no matter what happens.

Love,
Mom
xoxoxo

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Letter to Ryder


Dear Ryder,

As I sit down to write this letter I already feel the emotions start, as tears stream down my cheeks thinking how very hard you work every single day just to have a normal life.

I reflect on how you struggle to accomplish life goals at such an early age, never taking a break, never complaining you don't want to.

I have watched you in the last 3.5 months make leaps and bounds in your E.I.B.I Program, from the 1st day you started to feel at peace with yourself as well as others. I sometimes forget that you don't understand things and I feel so frustrated but then realize how you must feel. I am so sorry that you have to go through all this.

If mommy and daddy could take all your pain, frustration, loneliness and fears away we would, that is why we are fighting for you and will do anything it takes to get you the continuous help you deserve. I am very saddened to think we may have to leave this province that all of us were born in and move to a new province to get the help you so desperately need and deserve.

We know you are worth any sacrifice we only wish our government would feel the same way. Through the past few months I never felt so alone in a fight. How distant just a few people can make a person feel. I sometimes wonder, is this how you feel all the time?

Just know that we will always be here through the toughest time and emotional times, and those are frequent, but this will make us all stronger. I wish other people could see the difference your program makes and that sometimes things like money isn't everything.

Instead we need more compassion for those that can't ask for help. Mommy, Daddy, Paige, and all of your family will fight for you just as you do every single day for your future.

We LOVE you SO MUCH.

I will make you this promise you will never be alone and you will always have strength behind you. I know how brilliant you are and the world will see it as well. You have a purpose in life and I know you will show others as you do us what that purpose is. Be strong lil one, I know we ask a lot of a 3.5 year old and its not FAIR you have to go through so much just to have a typical life.

We see how awesome you are and what a fantastic sense of humor you have. Keep smiling buddy because you are a shooting star so very bright.

LIVE, LOVE & LAUGH is our family motto.

Love,

Your momma.

Letter to Brett

To Brett,

Although I always will love you sometimes it is so very hard. When the melt-downs occur (and they are often) I try to remain calm but sometimes after a sleep deprived night it is difficult to be patient with you.

I watch what your peers are doing and not doing and it breaks my heart that you are not at that place. What I wouldn't do to read a book to you from start to finish and have you engaged, what I wouldn't do to play a game of Candyland with you, what I wouldn't do to have you demand a toy in a store and whine until you get it, what I wouldn't do to hear you say "I love you" for the first time.

Love your Mom

PS: Please Minister Polak and Premier Campbell reconsider your decision. I am begging you to give our children with autism a better future.

Information Piece

Taking Away From Autistic Children September 21, 2009

Families with autistic children need at least $70-$80,000 a year to provide their children the adequate services they need. What happened to Premier Gordon Campbell's promise to keep up health care, education, and children's services? Gordon Campbell, we need to talk.
As a parent of a child with autism enrolled in the EIBI program, I have seen significant changes in just three months. Prior to the EIBI program we attempted the private therapy method but with much less success.

The funding method:

The government sends you a cheque every month which totals $20,000 a year. You have to hire a program manager from Vancouver at a minimum rate of at least $100 an hour. Then you have to hire your own BA (Behavior Assistant). Your program manager is required to train your BA, this could be as infrequent as once per month. Online conferencing may be an option, however if you only have access to a dial up connection Internet training doesn't work. Your child will now become a guinea pig for your BA to learn from as they learn from the Program Manager. You now are required to pay for WCB, get a Revenue Canada business number and do payroll. The funding allows you to spend up to 20% for materials used for therapy. If you use money for materials, you dip into your budget for the therapy itself.


During our time working with a private therapist we averaged 7.5hrs a week for therapy. That was all we could afford. After three months, we only saw our program manager twice. There was little improvement to my child in the three months. He still wasn't talking, interacting with peers, still had lots of temper tantrums, and the list goes on.

The EIBI method:

The government gives this program $70,000 a year directly to the EIBI program. All the staff is provided and there is no paperwork involved for the parents. Your child has access to a speech pathologist, an occupational therapist, a physiotherapist, your program manager and a multiple of educated and trained BA's. All of these people have received post graduate education working with families and children as well as specific training for working with children on the Autism Spectrum.

By the first day, my son learned to point to items that he wanted instead of whining, crying, taking my hand and dragging me to an item that he wanted. Within two and a half weeks with the EIBI program he started to talk, temper tantrums dropped significantly and there were improvements on a daily basis with communication to get things he needs instead of just screaming.

"My child now interacts and plays with other children, and tries talking to them. Eye contact has improved, vocabulary has increased and we hear many spontaneous words when before there were no words at all."

Our BA attends pre-school with him, which is extremely important as my child now interacts more with other children. If no EIBI program is available, my child will have to be withdrawn from pre-school. I live in a rural area and all EIBI employees come to my house every day for three hours and sometimes twice a day. We receive 15-20hrs of therapy a week, and the EIBI program provides all materials required for therapy.

In Conclusion:

The government is arguing that by closing the EIBI program down they can help more children with autism and increase their funding from $20,000 to $22,000. They won't be helping more children because all children in BC that have legally been diagnosed with Autism are entitled to the autism funding.

It is the same children receiving the money and of course the children about to be diagnosed will as well. The $2000 increase won't make a difference in the child's therapy, because they are adding on the harmonized sales next year, and that money will barely cover it. So the government is making you think you are getting extra, but it is just ending up back in their pockets. So they are not helping more children at all, they are hurting the very fortunate children that are enrolled in the EIBI program and trying to cover up their efforts to "save money."

"We want to keep the EIBI program operational and have it available for ALL AUTISTIC CHILDREN across BC."

Samantha & Dru Warden (parents)

Letter to Sweet-Bear

My sweetie bear,

I love how you love cuddles, kisses, how you drop everything and run to the door when I tell you “Daddy's home”!

I hope one day you will learn how to kiss us on the cheek and say “I love you too”. I love your charm, sense of humour, your giggles and goofy faces. I hope that sparkle and light in your eyes never goes out.

I love your ability to show your feelings and how you try to make your needs known without the words to express them. I hope your expanding vocabulary grows and grows until you are understood by all. I love how quickly you forgive me when I lose my patience with how difficult the “simple” things in life can be with you.

I hope you will have patience with me while I try and help you to make sense of the world, so poorly fit to your way of thinking. I love your stubbornness and your innate sense of what is right and wrong for you, though I don't always understand why. I hope you use them as your guide whenever Mommy and Daddy can't be there for you.

I love to hear about all the gains you've made when I talk to your therapists at the end of the day. I hope you know we're proud of you every single day, proud of all the hard work you do to learn what comes so easily to others. I love how you prove me wrong every time I'm ready to throw in the towel, believing we will never achieve a certain goal or skill.

I hope you know it is frustration at my own shortcomings, NEVER YOURS. I love all your special gifts and talents, and there are many. I hope you know how clever you are and that with hard work there is nothing you can't accomplish.

I love that you are Canadian, and are being raised in a safe, beautiful country. I hope the people in the province of your birth will stand up and make it known that you belong, that you deserve a shot at a happy, fulfilling life. I love knowing that even if Campbell doesn't keep his promise to you that we'll persevere....though I will be your therapist more hours in the day than I can be your Mommy.

I hope I will not fail you and that when you grow up you will understand I did my best for you.
I love you more than words could say, you are a joy. I hope you feel loved and included---you deserve all the best things in life!

Mommy XOXOXOXO