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

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

Letter to Kevin

At the age of three and a half, Kevin still didn’t speak. He locked himself in a world where he only perceived the existence of his close family members. He never looked into your eyes when you talked to him. Just by looking at him you could tell something went wrong.

At the age of four, Kevin was diagnosed autism and started getting early intervention. It has been a journey with tears and joy since then. With intervention from professional teams, step by step, Kevin has been making tremendous progress. He talks in full sentences; he looks into your eyes and smiles at you to invite you to play with him; he has even learnt some of the alphabet. He didn’t fail us!!!

Kevin is close to five now. Five to six is the critical year to a child’s brain development as scientific researches have indicated. The professional team at QA is working on helping Kevin understand abstract things those that are well understood by his same age peers. This level of understanding will determine his ultimate social and academic learning ability and therefore will have life long effect for him.

Please do not fail Kevin and allow Kevin to continue his development with the help from QA’s professional team. Reversing the EIBI funding really means everything to Kevin’s future.

Letter to Isaac

Isaac Sebastien Richard, 4 years old

To my beautiful, intense, capricious, brilliant little boy.

You have taught me a great many things about the world, about being a mom, about perspectives, about humility, and about true love.

About the world I have learned that there are people who will help us and support us, and there are those that will be unable or unwilling to step outside of themselves and stand up for you.

About being a mom, you have shown me what I am made of. I have learned I can be a great observer, a resourceful person, a steadfast mom dedicated to you. I have also learned the true meaning of the word patience.

About perspective, you have showed me that there are many ways to see and feel the world, and from your perspective the world can be a fascinating and horrifying place.

About humility, you have helped me be a better person, opening my eyes to the importance of sharing and connecting with others, and how far a little humility can go.

About true love, you have taught me that my love for you is like no other, and nobody can take that connection away from us. I have grown to love how you find perfection in your repetitious ways; I admire your brevity and honesty with people; I respect how brave you have to be every day to connect with people outside of our bubble, and to try new things.

You are momma’s hero.

Chris's Letter to Families

I am an adult with a diagnosis of Asperger Syndrome, one of the disorders on the autism spectrum. This is my message to you children with autism.

All of us on the autism spectrum have different strengths and limitations. Growing up for everyone is a journey. Our journey is unlike the journey all other people take. No one has to "learn" to breathe. We all do this naturally, without thinking.

Other people can learn many things easily, effortlessly, and naturally. Others can learn to look at people’s faces, and to look them in the eye, and to pay attention to them, and to talk to them, and to tell them what they need and want.

Other people can have relaxed conversations with their family and new people they meet. This allows them to make friends. They seem to do this without any effort, just as easily as they breathe.

Other people’s parents seem able to make them feel better. And other people understand how to make their parents and brothers and sisters feel better. This is because other people have shared emotional and psychological needs. That is something you might not understand until you are older. This also means when others make a mistake, they know how to make things right.
But most of all, all these things mean that other people understand each other.

Very often, other people don’t understand us, and we don’t understand other people. This can change. This is changing today. But everyone still has a lot of very, very hard work to do. You have a lot of hard work to do too, even though you are still very young. We need to learn all the skills we can. We need to work hard in school to get a good education. We need to work hard to learn good work habits.

Why do we need to do this?

We need to do this because we might never be as good as other people are at making friends. But, we have a lot of other things we can learn to offer our family, and friends, and society. We can learn loyalty. Many of us can work longer and harder than other people can. Many of us can develop amazing skills that can help other people. Our skills, and talents, and education, and training can help us to contribute to society and to help other people.

We also need to work hard to learn to get along with other people. This is something we will always struggle with. It’s easier if we get help when we are young. It is much harder if we have to try to pick up these skills as adults. Some of us are never able to learn these skills, because we were not able to get the help we needed when we were children.

I hope that all of you are able to get the help you need, and that you are able to have the success and happiness in life that I now have. I hope you won’t have to work as hard as I did to get this happiness.

I want you to remember two names for me. One is Gordon Campbell. The other is Mary Polak. These people are deciding your future right now.

In the past, a very good program was created to help children who are on the autism spectrum. It is the best program there is for helping people like us. Now, these two people are about to take this program away.

Your parents and I are working very hard to convince these two people to keep this program. When you grow up you will know whether we succeeded or not. You will know whether these two people helped you or not, or whether they took away the best program there was to help you grow up and lead a happy, productive and meaningful life.


Chris McIntosh

Letter to Crofton

Dear Crofton,


When I was pregnant with you, it was the happiest time of my life. You were planned and wanted. I LOVED being pregnant. I felt so healthy and I took very good care of myself for you. Not one cup of coffee, kept active, got lots of sleep and didn't give into unhealthy craving choices. I couldn't wait to meet you!

No parent plans on having a child with Autism. I didn't. I pictured our days filled with spontaneity....play dates and exploring beaches and picnic lunches. I pictured frequent visits down to your Auntie's house playing and getting to know your cousins. It never dawned on me that by 19 months you would be having interventions. I felt a sense of sadness that I still can't describe to this day when I realized our days would not be spent as I had thought. Instead of spontaneous beach adventures, you had a 20 hour/week intensive intervention schedule to maintain if you were ever going to have a chance at a future that didn't need to be funded by a government.

But sadness subsided quickly for me when I saw the developmental hurtles you jumped over in your first week!! You LOVED your workers and it was so obvious that they LOVED their job and judging by the progress I saw you make so quickly, they were obviously very well trained, which brought a desperately needed sense of security and hope to my saddened heart.

When I look at you now, and the amazing boy you have become, it's hard for me to even really remember the challenges that lay before you. This early intervention program gave you the ability to start kindergarten on time and on par with your peers. You went from a completely non-verbal, non-social child to this amazingly articulate and thoughtful little boy who loves to be a part of everything! I am so proud of you Crofton, for all the obstacles you have overcome and how freely and openly you express the love in your heart.

The EIBI program changed your life. This program gave me the chance to be your mother, not just your care-taker. I am mortified that it is being shut down. 20 hours a week is scientifically proven to be the minimum amount of intensive intervention hours required (before the age of 6) to make any substantial difference in the quality of life for a child with Autism. When the government announced the shut down of these programs on the standpoint that it isn't fair to the other children who aren't in the program, I was enraged. By privatizing these intervention services, children will be LUCKY if they get 6-7 hours a week. It's just not enough. How is that fair?

You were blessed to get into the program. I was so excited when your spot at QA came up and you were taken off the wait list. When I think about all the children who will never get the chance to enter into this life-giving program, my heart aches. It aches for the child who will never experience their full potential and it breaks for the parents who's children weren't given the same chance at life as you were.

I want you to know how proud I am of you, my sweet boy.

With all the love in my heart,

Mum

Letter to Cooper

To my most excellent and special little dude. There is nothing in this world that could have taught me more about pure love and about tolerance than you. I am so very proud of you every single day.

There are many seemingly harmless things in this world that are so very terrifying to you. Yet, you persevere and try hard every day to get over and past those fears and push yourself to be the best person that you can be. I love watching the joy on your face when you are riding your bike so fast I worry. To think there was a time that we thought you would never enjoy that experience. I love seeing you smile around people that have made you feel comfortable over the years. Another very simple thing that we weren’t sure you’d ever accomplish.

Every day you wake up and immediately start working hard. I know that every time you step out of the safety and acceptance of our home you are scared and anxious and that it takes every bit of energy you possess to just get through the day, trying to be a “good boy”.

You work harder than any other person I know, my sweetie! I know that going to school is so very hard on you, as you are still so afraid of the unpredictability of your peers. You get so anxious that you don’t know what to do, and sometimes hit out or yell at your “friends”. They become a little wary of you, and that hurts your feelings, but you don’t really know why. It breaks my heart to see you go through this each and every day, but I hold hope that one day you’ll figure this out much like you learned to ride your bike and now do so with such pride in yourself.

I am moved by the developing love you have for your little sister. She basks in your attention, and I am so proud of the empathy that you are starting to show her, and how careful you are learning to be with her. I love how you are also learning from her.

Your honesty never ceases to amaze me. You are so succinct in what you think and have no hesitation whatsoever to express your thoughts and feelings. While on one hand, this can be socially unacceptable, I am in awe of the idea that you will be able to move about this world without having to play the “games” that so many of us do with regularity. You are free in a way few can understand or emulate.

I am amazed by how very smart you are! You are in such a hurry to be an adult, and I think this may be because you are so bored with the limits placed on a 5 year old child. While I am amused when you say “Mom, I’m really an adult stuck in a kid’s body”, I also feel pain for the frustration this must cause you every second.

While you talk non-stop, and “make Mommy’s ears tired”, I am counting my blessings every single day. So many of your peers at the Queen Alexandra are not able to communicate on even a basic level, yet here you are with the vocabulary and apparent knowledge of a Philadelphia lawyer.

I get frustrated when I have to constantly negotiate with you and try to stay 5 steps ahead of you, but would have it no other way. I just hope that one day we can have actual conversations. That would be so nice and I really look forward to it.

I love how you now love to cuddle with me. I love to feel you all curled up in my lap, warm and snugly. I love smelling your hair and breathing you in. There was a time I wondered if we would ever share that, and it is the most special thing of all.

You have taught me so much. You have taught me that we don’t all fit into a perfect little box, and that this is OK. You have taught me that it’s OK to just be yourself. You have taught me that I am strong and patient and kind. You have taught me that I can be a warrior for you when I need to be. You have taught me that there are many ways to express love and emotion, and all of them are acceptable. You have made me slow down and really notice all the small things around me, as they can be very big things to others. You have taught me that I can get by on very little sleep!

Cooper, having you is like having my heart walking around outside of my body. I couldn’t love you more, or be more proud of you. You have already accomplished so much in your short life…so much more than many of the adults you aspire to be.

You have been dealt a very serious blow as of late. You don’t really understand what is happening, but you do know that someone is trying to take away something that has helped you immensely and makes you feel safe. I have, thanks to this, for the first time seen you express righteous anger. This makes me hopeful that one day, you will be able to take care of and advocate for yourself and possibly others.

You are the best parts of me and your dad, and such a character in your own right. I am so very glad to know you and share in your life. I am unspeakably proud to be the mother to such an amazing little boy who is going to grow into an amazing man.

I love you ten million gazillion, little man! Always will! Big squishy hugs and love from your Mom!

Letter Allison and Nathan

Nathan Forget,

Four and a half years old

Son of Trevor and Kathleen Forget

His future laid to rest in a Cadillac
RIP

Allison Forget,
just turned 3 years old

Daughter of Trevor and Kathleen Forget,

Rest in Peace, the future of this Sweet Angel,

You were always important to me.

You were always worth it.

Editors Note:

Words and pictures by Kathleen Forget.

Note: the children have not died. Katheleen obituary-like entry about her own children reflects how strongly she feels about the EIBI cuts - they are like a death sentence. Nathan is especially at risk as he has been diagnosed with severe autism.

You can read more about the Forget family in a recent newspaper article by clicking here.