14 Things I Want To Accomplish In 2014


1. Stretch myself to run a distance longer than the half-marathon. I am registered for the Around The Bay 30K race at the end of March.

2. Publish the book I wrote for 2013 NaNoWriMo. It may not be a best-seller (or maybe it will – who knows?), but I want to end 2014 being able to say that I’m a published author.

3. Sort out, for once and for all, my messed up relationship with food. For thirty years I’ve been flip-flopping between eating disorders and I’m tired of it.

4. Bring to fruition everything I have set in motion to get funding and support for our non-profit youth recording studio.

5. Get my home office space properly organized. That includes getting a new office chair so my ass stops sliding onto the floor.

6. Declutter my house and get rid of clothing, toys and things that are no longer used.

7. Run a half-marathon faster than 2:15:00.

8. Establish a habit of going to bed by 10:30 every night.

9. Stick to my training plans, without making excuses about the weather or how hard it is to wake up early in order to run or go to the gym.

10. Learn to cook more things from scratch. This year, I learned how to make great Hollandaise sauce and cook fish. Next, I want to conquer Alfredo sauce and find a semi-healthy recipe for cheesecake.

11. Make more effort to stay in contact with my brother. He is a really awesome guy and I miss him. I want him to be a bigger part of my life.

12. Complete another two credits for my post-grad writing certification. I am working on my third right now, and I want to have five done by this time next year.

13. Spend more time with friends. Virtually all of my friendships are conducted via the Internet. While that is highly convenient for my introverted self, it is good for the soul to be in the same room as a friend having a good chat. Preferably with wine.

14. Be comfortable being me, instead of trying to be a person I think other people want me to be.


What are your goals for the next year?

This is an original post by Kirsten Doyle. Photo credit: joesive47. This picture has a creative commons attribution license.


Diagnosis Day: 8 Things I Wish Someone Had Told Me


Do you ever look back on a particular day in your life and wish things had gone differently? If only you’d said this thing, or if only you’d done that thing. We all know, of course, that those “if only” scenarios don’t do us one whit of good in terms of the outcome, but that doesn’t mean we’re not allowed to think of them. Sometimes we can use those lessons in the future, and sometimes we can help other people going through similar things.

One of the most pivotal days in the life of an autism parent is the day of their child’s diagnosis. When I look back on that day, I remember shock, tears, and a sense that a giant constrictor had wrapped itself around me and was squeezing me so tightly around the chest that I could barely breathe.

Realistically, there’s no way to completely cushion a blow like this. But maybe – just maybe – there are some things that would make it easier to bear. Here are the things I wish I had known when I got the diagnosis.

1. The doctor does not have a crystal ball. Any dire predictions that he makes for your child’s future are not set in concrete.

2. If you Google too much too soon, you can drown under the weight of the information overload.

3. Your child is first and foremost a child. Don’t let your child become the diagnosis, the whole diagnosis and nothing but the diagnosis.

4. You may feel as if your reality has shattered, but all that’s happened is that your reality has changed. You have to give yourself the space and time to get used to your new view.

5. Now more than ever, you need to nurture your relationship with your partner.

6. Apply for all the funding and services you can, even if you think odds are stacked against you. There’s always the chance that something will stick.

7. Don’t be afraid to cry. Even if it’s in front of the kids. It’s OK for them to know that you’re human.

8. Know that you can do the whole special needs parenting thing. You may not feel that way in the beginning, but you will. You don’t have to know all the answers – because let’s face it, none of us ever does – just know that you will be the parent your child needs you to be.



5 Websites That Every Autism Parent Should Bookmark


If you are the parent of a child who has recently been diagnosed with autism, you’re probably floundering a little bit. You are going through a major reality shift, and you are wondering, What next? My biggest piece of advice for parents in this situation is to avoid the temptation to Google “autism”. That is a sure recipe for information overload, which can compound any feelings of helplessness and anxiety that you may already be experiencing.

Give yourself at least a couple of weeks of breathing space (or longer – my doctor imposed a Google ban of 30 days, which I am absolutely convinced helped me enormously). When it is time for you to start looking up stuff, start with the following information. It will not only help you now, it will stand you in good stead throughout your autism parenting journey.

1.  Wright’s Law is aimed at parents in the United States who have special needs kids in the special education system. Although a lot of the information is specific to American laws, a great deal of it applies elsewhere. This site will give you some very good information and resources about your child’s rights, and your rights as a parent.

2. If your child is in the Toronto District School Board, this is the site you want. If not, look up the website of whatever school board your child is being, or will be educated in. Once you have found the site, navigate to the Contacts page and bookmark that. It is likely to contain the phone number of at least one individual whose job it is to deal with special education matters.

3. This is the Health Canada resource site for autism. Most governments have sites like this, and they include fact sheets, and information that is specific to where you live, like funding and services that are available.

4. The Geneva Centre for Autism provides some good information about what autism is and what it means to families who are affected. You can use this not only for yourself, but to pass on to friends and family members who you feel could benefit from the information.

5. If you’re in Ontario, you need this site. If you’re elsewhere, look up the site that contains information about special education laws and processes in your jurisdiction. This will tell you what you and your child are entitled to and how to navigate the maze of educators and policy-makers, what forms to fill in, what you can request, and much more.

As a bonus, here are a few posts I have written in the past that may be of help to families affected by autism.

1.  Tips for parents whose kids have just been diagnosed.

2. Some possible early signs of autism (emphasis on “possible” – typical kids may experience some of these as well).

3. A fantastic guest post by autism parent and educator Jennifer Krumins, on how to approach life as an autism parent.

4. Tips for parents who feel a little lost when it’s time to draft an Individual Education Plan.

5. How to keep your neurotypical children safe and reassured when their sibling is having an autism meltdown.

 (Photo credit: Sonia Belviso. This picture has a creative commons attribution license.)

New Autism Diagnosis? 5 Tips for Parents

It’s a scene that many parents are all too familiar with. You’re sitting in a doctor’s office and you’ve just received news that your child has autism. You did know, of course, that something was wrong – after all, that’s why you had your child assessed – but you’ve been in a weird twilight zone of denial, in which you have managed to convince yourself that this thing that’s wrong with your child is just temporary, that it’s nothing a bit of speech therapy or O.T. won’t cure. And now, here’s this doctor telling you that your child will be living with autism for the rest of his or her life.

You can barely listen as the doctor goes on about how your child’s trajectory through life will be atypical, delayed, and fraught with challenges. You are too stunned to pay attention to anything but the hopes and dreams you had for your family crashing all around you.

How do you cope? How do parents find out that their child has a lifelong developmental disability – one that will in all likelihood necessitate some level of permanent care – and then go on to live some kind of a normal life?

Tip #1 – Remember that the doctor does not have a crystal ball

The doctor can’t just say to you, “Your kid has autism. See ya!” He has to talk to you about therapies, strategies, next steps – and that inevitably involves talk about how he sees your child’s future. But the thing is, many doctors tend to be a bit pessimistic, and they will give you the worst case scenario.

When we were getting my own child’s diagnosis five years ago, the doctor could not have painted a bleaker picture of the future if he had tried. We heard all about the stuff my son would never achieve, experiences he would never have, things he would never be able to do, the intensive level of care he would need for the rest of his life.

The doctor was not trying to be mean. He wasn’t trying to be negative. He was just presenting what he saw to be the reality. He had no way of knowing that in the first year of IBI therapy, this kid would make 23 months worth of gains. He did not know about the mathematical aptitude or unique problem-solving skills, and he could not predict that given the right educational environment, my child would be able to soar.

Anything the doctor tells you about your child’s future is just a guess – an educated guess, but a guess nonetheless. Don’t let bleak predictions make you give up hope.  Your child needs for you to believe in his or her potential, and to be frank, if you have a bit of faith, it will do your own spirit the world of good.

Tip #2 – Watch out for information overload

Human beings are curious by nature, especially when it comes to the wellbeing of their offspring. I would venture to say that most parents, on receiving their child’s autism diagnosis, go home and make a beeline for the computer so they can Google “autism”. I know I did.

The Internet can be pure crap, though. A Google search for “autism” yields over 76 million results. If we very generously assume that 10% of the information on the Internet is completely solid and scientifically proven and not the subject of any debate or controversy, that leaves you with seven million pages of “good” information.

It is a daunting task, trying to filter out the seven million pieces of “good” information from all the junk. It can make the most hardy of souls feel like they’re drowning.

Information is all well and good, but it has to be consumed in manageable doses, especially in the beginning. The diagnosing doctor will give you fact sheets and other information. That is all you need in those initial days while you are trying to adjust to this new reality.

Tip #3 – Get your name onto waiting lists and find out about funding

Your doctor will probably give you the names and phone numbers of local services, like speech therapy, O.T. , and autism intervention services. If he doesn’t, call him back and ask. Then call and enroll for the services. Some areas will have one central place that organizes all of the services; in other places it is more fragmented. No matter which way it works, it is better to start services as early as you can, and unless you live in some kind of Utopia, the places you call are bound to have waiting lists.

At the same time, find out about funding. If you live in a country with socialized health care, as I do, then many of the services for your child could be covered by the government. You may be entitled to disability tax credits and funding for respite care or specialized equipment. Your local autism foundation should have information about the available funding, and they may even have experts who will help you fill in the forms.

Tip #4 – Don’t let autism define your child

This may seem self-evident, but in the wake of receiving the blow of an autism diagnosis, it is hard to think of anything else. Parents of newly diagnosed kids often go through a kind of grieving process as they come to terms with the loss of what they thought their “reality” was. You may find your heart breaking every time you look at your child.

But remember that the diagnosis itself has not changed anything. Your child is still the same person he or she was yesterday, or last week, or last month. Your kid may have autism, but he or she is first and foremost a little kid, with those little quirks and personality traits that guarantee uniqueness.

Autism will always be a part of who your child is, but it is far from being the full picture.

Tip #5 – Take care of yourself and your relationships

When I saw my family doctor shortly after my son’s diagnosis, he gave me a startling statistic: about 80% of couples who are parents of kids with special needs or chronic illnesses split up within two years of diagnosis. It is easy to be on the outside looking in, and say that parents should draw strength from one another, but the truth is that something like this puts a huge strain on many relationships.

The thing is, each parent is thinking about autism, and how they can help their child. This becomes the singular focus consuming both of them, so much so that neither of them has room for anything else. And so they neglect themselves, and they neglect each other. It’s not their fault – they are just putting their child’s needs ahead of their own.

Do we not deserve to be happy, though? Yes, parenting our kids is the most important job we’ll ever have, but we are also individuals in our own right, and if we neglect ourselves and the relationships with the people we care about, we will drown.

So make sure you take time to be with your partner, just because. Spend time with your other children. Nurture your friendships, and most of all, take time out for yourself.

And don’t feel guilty about taking care of yourself. You deserve it.

(Photo credit: Kirsten Doyle)


Autism funding – not a game for the faint-hearted

When George was first diagnosed with autism, I remember being overwhelmed by many things.  The overload of information, the attempts to separate the good information from the inaccurate yet guilt-inducing nonsense, the diagnosis itself, the fact that in an instant, all of my preconceptions of what my family’s life would be like were shattered, the confusing labyrinth of autism funding.

Somehow I navigated my way through the confusion and the funding.  It’s so easy to say that in one sentence, but the acquisition of funding was a long and painful process, one that was so complex that thinking about it made my head hurt.  Trying to figure out how the funding worked was like trying to memorize pi to 59 decimal places while simultaneously doing long division in my head.  In the end, once I had been told that I qualified to apply for funding (see?  You have to qualify just to apply), I took the application forms and all of my information to the good folks at Respite Services.  The Respite Services guy, with endless patience, helped me fill out the forms.  He wrote down lists of what supporting documentation I would need to send with which forms, where to send them to, in what sequence to send them, and what I would be able to actually use the funding for.  If it hadn’t been for the Respite Services guy, I would still be wandering around in the metaphorical maze looking like a lost fart.

If I’m to be completely honest, I still don’t really have my head wrapped around the funding.  Some of the funding is used for things like educational materials, specialized equipment or support aids, parking costs for medical appointments, anything that I have to actually purchase as a result of George’s autism.  Other funding is used to pay respite workers to come to my house and work with George.  Some funding is deposited into my account on predetermined days, other funding is reimbursed when I submit invoices.  I couldn’t tell you, though, which agency provides what funding or what all the acronyms stand for.

Anyway, I recognize that I am extremely lucky to have any funding at all.  Once our funding was first approved a couple of years ago, we hired a respite worker.  George had actually known her for some time – she used to work at his daycare and kind of transitioned into babysitting for us occasionally.  When the funding came through, she agreed to come to our place every Sunday morning to work with George.  She would play with him, give him some lunch, talk to him – all geared in a way to develop his speech and social skills.

This arrangement worked very well for a couple of years, during which this wonderful lady became a friend to our family as well as a respite worker.  Sadly, she became ill a few months ago and had to step back from respite work in order to focus on her health.  It was a blow to our family, but we completely understood.  We still keep in touch with her, and she has visited us a couple of times to say hello and see the boys.

We did have to get a new respite worker, though.  I had never actively recruited for one – our previous worker kind of came to us through circumstance.  So when the need arose, I called up my friends at Respite Services and told them I needed a worker.  They asked me a bunch of questions.  On what days would I need a worker?  What goals would they be helping George to achieve?  How energetic was George and what kind of things did he like?  Was he allergic to any foods?  Did we care whether the worker was a man or a woman, what age they were, or whether they spoke with an accent?  Some obvious questions, some fairly obscure ones.  In the end, we came up with a profile, and the Respite Services people sent out a notification to the workers they had on file.

Two weeks later, I got sent an email with four matches.  I read through the resumes, and immediately eliminated one because the worker had indicated a preference for working with adults over children.  I contacted the other three and last week, I met Catherine.  You know when you like someone instantly, the moment you first meet them?  That was Catherine.  She was cheerful and outgoing, and both of the boys liked her on sight – and they are pretty good judges of character.  We spoke with her at length, and agreed on regular days and times for her to work with George.  And she will be starting with us on Wednesday, when George gets home from the therapy centre.

We are looking forward to this new chapter in George’s life.  We are looking forward to seeing him interact with a new person, and we are excited about seeing the ideas that Catherine might come to the table with.

The jury will be out for a while, until we as a family have gotten to know Catherine better (and she us – we may be really groovy people, but she could turn out to not like us!), but we are hopeful.  And in the life of an autism family, hope is essential.