Imagine your daughter never getting invited to birthday parties, never driving, never graduating, never getting married, never living on her own, or pursuing her dreams. Well that's profound autism. This is Ava. She was born two weeks early, but healthy. After a few months we noticed she didn't smile or laugh often. She didn't seem interested in what was going on around her. She crawled and walked at the right times, but never babbled or started saying any words. We were worried but everyone said all kids are different. Then she was 18 months and we knew something wasn't right. We went to a pediatrician and she referred us to early intervention. They came, suggested different games, nobody mentioned autism. Then she was referred for an IHCAN assessment, which is the assessment for autism, but still no one actually said autism. We continued with the early intervention and waited for this assessment. It took a year. The waitlists were long. They did their tests, then sat us down in the family room and told us our beautiful daughter had autism. That she would be different. We were crushed. We didn't even really know what autism was. So of course that night we googled like crazy. She was 2 and 1/2, and they told us that developmentally she was 11 months. We were terrified. We didn't know what this meant for her or our family. Could we even handle this? Could we be strong for her? We were given false hope by the centre she attended for therapy. They basically said it wasn't a big deal, that with their therapy she would be cured. They didn't actually say cured, but they sure implied it. So she went there for two years. No real progress. We didn't understand. They had no answers. We felt duped by this centre. We wasted precious years because they say the earlier the intervention, the greater the progress. We feared for her when we got to old to care for her. What would happen to her when we were gone. She would wind up in a group home. That fact is always in the back of our minds. We wanted more for her, but we had no direction and no good programs here. Then she started kindergarten and with many ups and downs, we finally had a great thing going there, in the sense that she was happy. But they weren't really providing her with therapy. Now she is 8. She is maybe 3-4 developmentally. She has an older sister and a younger brother. We're a busy family to say the least. She has a beautiful spirit and a gentle nature. She is non verbal, does not understand social situations and has no concept of danger. She will run in to a busy road. She will leave the house, go anywhere with a stranger. We have to constantly watch her so she doesn't escape. We have to trick out our home so she can't get out in the middle of the night while we're sleeping. She wakes in the middle of the night most nights and stays awake. We need to stay awake with her. We're chronically sleep deprived. She is not potty trained. Her interests are still extremely limited. She doesn't notice or interact with the world around her very often. We are stared at everywhere we go, people make unsolicited unkind comments because autistic children do not look like they have special needs. She is so many more things of can't do's, but I have a hard time talking about the negatives. She is also funny, smart, mischievous, cuddly and beautiful. It's a very unique life we live, mostly misunderstood by people. People don't understand autism yet. It's also lonely. People you know get scared off. But there are some amazing people that have stepped up and helped us tremendously. That treat Ava like everyone else. We love those people.
We attended a conference last year and met a behavioral analyst with a method we really believed in. Luckily he was moving to Penticton and we were able to hire him. We are now working hard with him (he comes up with the programs and the strategies for Ava to learn life skills and succeed, teaches us and we implement them) to help her come out of her shell and learn what other kids learn naturally, along with language. She is doing some remarkable things with this new therapy, but it is costly. We will do anything to try and provide the best possible future for Ava. We want her to succeed and hopefully one day be independent. That's our greatest wish. I want her to be able to tell me when something hurts and what it is. I want to know her thoughts, her wishes. Our greatest chance is frequent, intensive therapy. We do the bulk of it at home, but would like to supplement with behavioral interventionists as well. The more we can do, the more she will succeed. She is only young once and these years are so critical to learning.
So what does one year of behavioral intervention look like? Well we don't know. We really want to find out. We do know that the work we as her parents have put in has gotten great gains in just a few months, such as words, listening, focus and wanting to be around us and play. Her interests have grown and she is finding ways to communicate with us better. Every tiny step is a big cause for celebration in our house. So add in therapists who can do more of what we do, and there is no limit.
Why $20,000? Well the work of therapy in the world of autism is incredibly expensive. When your child is under 6, they receive $22,000 per year, which sounds like a lot, but doesn't actually get you as much as you hoped. After 6, they get $6,000 per year, which is definitely not enough. We are thankful we receive something, but it becomes an either or situation with choosing therapies. Why does it go down so drastically? Because they go to school, which doesn't help with autism, where they are not receiving any actual autism therapies, but rather they are encouraged to fit in, sit still and learn the curriculum. They are not getting 6 hours a day of any autism specific therapy. They do get a 1:1 CEA if they are needed (which Ava needs), and they do a lot of work with her, not entirely curriculum based, but still not ABA. The nice thing about school is the hope she will learn to socialize. To put it in a different perspective, it has been calculated to cost $80,000 per year for autism therapies. That is shameful, but there is nothing we can do about it. Not having the money hurts. Knowing the advantages your child won’t have is heartbreaking. We are fighting for the government to finance this, as this money now, will save hundreds of thousands or more down the road.
We are currently using our $6,000 to pay for the behavioral analyst. He costs $9,000 per year (trust me, worth EVERY penny). At a minimum, hiring behavioral interventionists costs $240 a week ($20/hr), hopefully 12 hours per week (which sounds like a lot, but the recommended is over 20 hrs/week), which works out to $12,480 per year. Finding the right one that Ava accepts is another matter and that may cost up to $300 a week ($25/hr), adding up to $15,600 per year. See, ridiculously expensive. On a different note, we purchase a lot of things to help her. Therapy toys, iPad, with communication app on it, swimming therapy, art therapy, music therapy. So as you can see $20,000 won't get us an entire year, or pay for all our expenses but it can still get us a large amount of time with intensive therapy which is what she needs. We don't have that kind of money, $20,000 isn't going to pay for it all, but it certainly provides more than we currently have. My heart is breaking that I can't offer her more, that I alone can't offer her the chance at a full independent life. I need help. We need help. We will go down every avenue to try and get her the help she needs even at the expense of my pride and dignity. She matters too much not to try. Who wouldn't do absolutely everything for their child?
I don't expect everyone to donate money, but I really hope everyone could at least share this. This campaign, if successful can mean the difference between Ava living in a group home with caregivers, and being independent. Please, I am begging for your help. If you can't donate, please share. She is 8 years old and deserves the most fulfilling life we can provide for her. I know she is not special to you and she’s just another sad case that needs money but I will try anything, including trying to convince you. Please understand, I don't think there is anything wrong with my daughter, her innocence is a wonderful thing. I don't want to "fix" her. I just want her to be able to be part of the world around her, and as independent as possible. I do not want to strip her uniqueness away. Thank you again from the bottom of our hearts. Our success will be your success.
A friend told me to throw in some incentives. Things like, $100 donation gets a video of Ava during a therapy session (more exciting than it sounds), $50 gets video of Ava saying a new word, and $25 or less gets a video of Ava just being a laughing funny goof. More than $100 gets all 3!! Thank you again.