Tiffany E. Ly – Living With Autism
Six years ago, I became a father for the very first time. Life was great. I started a new job with decent pay and great benefits. My career was on an upward trajectory and my family life was filled with new joy, hopes, and ambitions. Everything in my family life was normal and it was pretty much the beginning of my picturesque family. I was living the Canadian Dream. However, unbeknown to me, my daughter, Tiffany E. Ly was born with Autism Spectrum Disorder (ASD) and Rett Syndrome. My picturesque family life would completely change and take a sharp turn in two years time.
For today, instead of sharing my usual personal finance post with you, I will be sharing a very personal story. With this story, I hope that it can provide you with a glimpse through the window of a family living with Autism Spectrum Disorder and Rett Syndrome. The struggles that we, as a family experience on a daily basis, the challenges that my daughter faced and the obstacles that she must overcome just to live a normal and ordinary life.
Tiffany E. Ly aka Little Miss Dimples.
Little Miss Dimples
From the time of her birth till about eighteen months of age, Tiffany was developing normally just like any other babies at her age. She would charm everyone that she met with her infectious and cute little dimple smiles. She became known as Little Miss Dimples and continued to steal people’s hearts with every encounter. As a parent of such a happy and charismatic toddler, I felt very blessed and very fortunate to be her daddy. I started to dream of what she can become when she grew up (I secretly want her to become an investor). This was one of my greatest joys of being a new parent.
Signs Of Autism
After about eighteen months of age, I started to notice that I was losing my little girl. She started to make less and less eye contacts with others. She would not respond to her name when called. She stopped talking altogether and even lost the few words that she had learned. Her encounters with others were no longer full of laughter and smiles. There were only stress and tears. It took our family about six months to obtain a clinical diagnosis and confirmed that Tiffany had Autism Spectrum Disorder and Rett Syndrome.
New Life With Autism
After my daughter’s official diagnosis, my wife and I were devastated and we fell into depression for a few months. Our days were no longer filled with laughter, joy nor hope (even till this day, I still find it difficult to talk about my daughter’s disorder). There were only tears, denial and the question of, “why does it have to happen to us?” Not being able to communicate and meet our daughter’s basic needs were the most difficult challenge that we had ever faced in our lives. We felt really lost and had no idea what we needed to do help our daughter.
Seeking Government Help
We started to search and apply for government programs to try to help improve Tiffany’s mental development delays. For kids diagnosed with ASD, the most effective therapy to improve their delayed mental development is Intensive Behaviour Intervention (IBI) therapy. To qualify for the government IBI assistance program, Tiffany will have to pass a one-hour assessment from a group of ASD assessment specialists. She will receive the government subsidizes IBI therapy if the specialists believed that it will benefit her.
Unfortunately for Tiffany, she did not perform well during that one-hour assessment and failed due to two reasons. The first was a Rett Syndrome diagnosis, which the government has now classified under a non-ASD disability. The second reason was the severity of her disability was too severe and the specialists don’t think that she’ll benefit from the IBI therapy. A kid can also fail the assessment if that kid’s ASD severity is deemed too mild or too high functioning. Personally, I think that these criteria are too subjective and a one-hour assessment is too short of a period to come to any conclusion.
The Cost Of ASD
Being rejected by the government’s IBI therapy program was another setback for our family. This meant that in order for us to help our daughter improve, we’ll have to exhaust our own resources and pay for whatever private therapy that we can afford. The going market rate for IBI therapy starts at $40 per hour and the minimum recommended therapy is 10 hours per week to be effective. Hence, Tiffany will need about 40 hours of therapy a month, which can cost about $1,600 per month to start. Did I mention that these are after tax dollars?
The therapy cost is only part of the equation. Other costs like time are taken off work for the parents, regular specialist appointments, special dietary requirements, one on one care at day cares and so on, can eat up your monthly pay cheque in a hurry. To put this into perspective, these costs add up to another additional 1.5 mortgage payments for our family on a monthly basis.
Autism In Mind Office
Autism In Mind (AIM) Children’s Charity
Fortunately for us, we found a local organization, Autism In Mind (AIM) Children’s Charity located in Markham, Ontario that specializes in providing support and services to families living with Autism. Within this organization, we found a closely knitted and passionate community where families work together to support and help each other navigate their lives with Autism.
With the help of AIM, Tiffany was able to receive the therapy that she needed about two years ago. Our family was able to receive a subsidized IBI rate that we can afford on a long-term basis. Tiffany is slowly improving her communication skills and learning how to communicate with others using her eye gazing device. She’s also working on everyday basic life skills.
Becoming A Volunteer
Life with Autism is tough, even with the financial resources and the money discipline that our family has. It can be even more difficult for families with less income and financial resources compared to our family. I really want to give back to my community and assist the families that really needed the help to get by. Hence, two years ago, I decided to volunteer to become a board member at AIM. I want to make a difference for the kids and families living with Autism Spectrum Disorder.
We #AIM To Make A Difference
At AIM, we #AIM to be the voice for our kids that can’t speak for themselves. We #AIM to help kids with Autism being accepted as productive members of our society. We #AIM to help as many kids as we can and give them a chance to live a normal life. We #AIM to make a difference. You can make a difference too. Read on to see how you can help families living with Autism Spectrum Disorder.
Money Raised during last year’s STWM event
Scotiabank Toronto Waterfront Marathon (STWM)
Last year, AIM became one of the official charities participating in the Scotiabank Toronto Waterfront Marathon (STWM). For our first year of participation, AIM was able to raise more than $11,000 to help kids living with ASD. For our second year, we are raising the bar and set a goal to raise $25,000 for the STWM event. The more money that AIM can raise, the more kids and families AIM can provide services and support to.
There are ways that you can help and make a difference in the lives of families with Autism. You can:
- 1) Become a generous monthly donor for Autism In Mind Children’s Charity, or
- 2) Donate to Tiffany E. Ly’s Daddy’s Scotiabank Toronto Waterfront Marathon fundraising campaign, or
- 3) Join the Autism In Mind Children’s Charity’s STWM running team and run in the Scotiabank Toronto Waterfront Marathon or
- 4) Show compassion and acceptance towards families living with Autism
To walk the walk (I can’t run because I have bad feet pain), I will personally donate $300 to start. I hope that you can open your heart (and your wallet) to donate any amount that you can. If you donate at least $20, you’ll get a tax receipt for the 2017 tax year (for Canadian residents).
Thank you for your generous support,
Leo T. Ly
– Board of Director @ Autism In Mind Children’s Charity
– Supporting voice for families living with Autism
About Leo
Thank you for sharing your story, Tiffany is really cute. That is very good of you to be involved with the board for the Autism in Mind Charity.
Glad to hear you found a great community to help you with her and that she is turning around. Kids are everything. Wish you all the best and tossed something towards your cause. Keep it up Leo the world needs more people like you!
I’m so sorry to hear about the difficulties you have gone through in your personal life. I can imagine how much of a shock it is to receive a diagnostic as such for your daughter. It’s good though that you found support in the charity, to support you to fight forward.
I have several friends with children that have autism, and I hear about their struggles often. I knew the therapy was often and pricey although I had no idea just how much!
Thank you for sharing your story. My son also has autism. I realized it when he was about 2 and wasn’t speaking. He also had some quirks. I always try to help others with autism–it can be a tough diagnosis at first!
My sister has Williams Syndrome and Aspergers a form of autism too. She goes to a special needs school, uses a wheelchair and has the developmental age of a 3 year old when she is 8. I identify with your journey and I am very proud of your journey and that you are now giving back to the community that helped you with Tiffany.
Thanks for sharing Leo!!! I know that couldn’t have been easy to share with everyone on the internet. My SIL is on the autism spectrum as well and we’ve been responsible for her care for the past five years since her mother passed away. There are definitely some challenges along the way but it is totally worth it in the long run 🙂 I’m happy to chat if you ever need a resource.
She is so adorable. My friends little girl is Autistic and non verbal. She was on the wait list for IBI when the Government stopped it for children over six. Her Mom is struggling with her in school and does not know what to do next. I will have to share this post with her.
I admire you for sharing this write-up. Sharing the awareness is definitely one of the things that we really need to impart to people. We cannot avoid it but being able to know how to deal and help those who have autism should be our fare share. Your little one is so adorable too!
Thank you for sharing your personal story about parenting a child with autism. The challenges autistic children and their parents face are often misunderstood. It’s important that the general population be educated about and have a better understanding of autism.
Firstly, thank you for being so brave to talk about your baby girl’s disorder. It’s great that there are organisations who are willing to help people with autism like AIM. Hopefully by the time this comment is posted, Tiffany’s conditions will have got better – she is just so adorable and doesn’t deserve this. May everything nice comes with you and your family.
Thank you for sharing your story. There is more awareness required to help the child with autism and also, the ways we can support the families. I am going to share it so that I can also help in spreading awareness in my circle.
I cannot imagine how you and your wife felt when you realized what was happening at your daughter’s 18 month. You documenting your journey is a very helpful resource to others who are going through something similar and uncertain about their next steps.
Sarah
http://Www.Hitcontinue.eu
Thank you for sharing this. I work in a all inclusive nursery where a lot of the children are on the autistic spectrum. I can relate to the struggles you are going through, but Tiffany will still develop and life will get easier as time goes on. Keep going, it sounds like you are doing a wonderful job!
What you are going through is what my mom with through in the early 90s with my brother.Autism wasnt as big as it is now and its so many more children being effected by it now and its crazy. My brother is 29 and there wasnt much help for my mom, not many non-profits, groups, special therapy or anything so be really grateful that in this time there is more help than ever because my mom was lost and confused. This epidemic shouldnt be as big as it is to be honest.
Thank you for sharing your story.Your kid is really sweet.But,I know as parents that it is not easy to accept the truth of autism.But,seems you all are doing well.And thanks for sharing all these information including financial options that are available for kids with autism.
Thank you for sharing us your personal story. No matter how much challenge we face, still life is beautiful because you have your little miss dimple with you. Your journey will be exciting and full of stories 🙂
It is great that you were able to find the Autism in Mind Charity to help your family out. I know diagnoses like that can be hard, but your daughter is very beautiful and I’m sure she will grow up to do great things! Thank you for sharing your story
Thanks for sharing your story. I can relate since I have an adult child with autism, though every story is different. My son is 19 yrs old now and only got confirmation of his diagnosis just over a year ago. It took over a year to get his diagnosis. The reason is that he is a bright high functioning autistic with a non-verbal learning disability that has very slow processing speed and very diminished executive functioning, combined with a social anxiety. And since he has been homeschooled his entire life, we were ignorant of the reasons for his many behaviours but as things got worse, we knew we had to investigate.
It is very challenging to deal with and requires a complete rethinking of ones role as parent, reseting expectations and how to accommodate his needs in balance with the needs of the rest of the family (we have 2 younger kids 15 and 11, also homeschooled).
Since his recent diagnosis, we have been playing catch-up in tracking down resources to assist him. Due to his age and because of his high level of function, he has been excluded from accessing many services that may be available for younger cases. Though there are not many for adults, especially higher functioning autistics, we have been blessed with being able to connect with a series of supportive services. The road is challenging but thankfully the resources are slowly growing, though somewhat disjointed and spotty.
Anyway, thank you for sharing your story. One key is to stay connected and well networked, which requires a lot of research. Thank you for doing your part in make services available for those in need.
P.S. should anyone else need guidance in finding these resources for the same situation as us (in Canada, most in the Toronto and some in the Ottawa areas especially), please post and I will endeavour to provide any info I can.
As a relatively new father myself, it’s been absolutely the best thing that’s happened to me having a little girl who is now 19 months.
I recently watched this video on TED that may or may not help. But, I think it’s something that you might want to look at too. I know I’ll try and take this video into account should our daughter be diagnosed with some disorder or disease later in life.
https://www.ted.com/talks/heather_lanier_good_and_bad_are_incomplete_stories_we_tell_ourselves
Thanks for sharing…very insightful…