potty-training-basics-2160x1200.jpgMan oh man – I feel like I could write a novel on this subject. We have been struggling with getting Monkey potty-trained for well over a year. Last summer, J and I took a week off from work and decided to do potty training bootcamp (aka the three day method). We had a bit of success, but it was not at all consistent, and after huge amounts of accidents, J and I got frustrated and gave up. Because Monkey’s communication level at that time wasn’t really there, she didn’t know how to communicate that she had to go. We were using potty chairs at the time, and sometimes she made it on her own, but it was a crapshoot. There were days she would make it at daycare, and other days when it was accident after accident.

J and I should have stayed the course, but it was too stressful on everyone, so we decided to put it on hold. I know we should have started earlier, but one of our goals for the summer was to make sure Monkey was potty trained in time for school this September. Our ABA therapists had us take some data to figure out how often she was going, and a plan was built around that. I know that toileting a child on the spectrum can be challenging – and I am not an expert on the subject, but this is what worked well for us, and I wanted to share so I could help others.

Monkey’s first full day was at her therapy centre and she was put on the toilet every 10 minutes. We had a special “bag of fun” made up which was only used in the bathroom and contained some highly motivating items for her. These included: bubbles, blue balls (she LOVES balls and anything dark blue), favourite books, a soundboard which made noise, her toy cellphone, and gave a list of some favourite YouTube videos like baby shark.

She was put on every 10 minutes, which we were nervous about because we didn’t want her to associate the bathroom with things she didn’t want to do (which is why the highly motivating items were included). She would get the most highly motivating item (an m&m) when she used the potty successfully. The was only put in pants and underwear, and pull-ups were only used for naps or night time sleep. The first day she had 4 accidents (but started realizing that she was wet). The second day at daycare we were nervous about ,but she only had two accidents. Gradually we began to increase the time interval and still rewarding with the m&m and giving lots of praise when she used the potty.

After 4 days, she initiated a couple of times, and managed to hold it and make it to the bathroom in time. After a week, the accidents had stopped and she was using the toilet regularly (not initiating all the time, but could go about 45 minutes when holding it). It has now been 2 weeks…and (knock on wood)…she is potty trained. She has initiated a little more often, but we are still working on that part. We had a long drive in the car yesterday (about an hour each way), and there were no problems. She has even woken up in the morning with her diaper dry a few times – after a 11-12 hour stretch of sleep!

Clearly, she was ready for this, and it was hardly painful (unlike the last time). Last summer, we did not have Monkey’s diagnosis and that is likely why we were pushing potty training. I have learned now more than ever to trust my gut to figure out when she is ready for things. It is natural to compare your child to other children their age for milestones, but this is also dangerous. She will have her own timeline for doing things, and it doesn’t make them any less amazing when she does. She has come so far in a few months and her communication skills are improving every day.

J and I will be attending a “More Than Words” workshop, geared towards getting children on the spectrum to have more functional communication. We will be working with other parents and a speech language pathologist to have some training workshops, and some sessions with Monkey to apply the skills we have learned. We are hoping to learn new tactics and skills so we can communicate with Monkey a little more.

We are so so proud of this major skill though! This is huge, and I am happy that come September she should have mastery of it. One major check off the list!!! Now to wean her off the m&ms…..


What I Can’t Stop Thinking About

This is an incredibly personal post for me, and I have thought for a while about whether I should even include it on here, but since this in a place to help me work out my thoughts and feelings in a somewhat anonymous environment, except for the 3-4 regular readers I have (Hi Mom!), here goes nothing.

I think that many woman of a certain age (but not all)  have a time where they look around and see nothing but babies and pregnant women. I never really noticed it before until J and I reached a point in our relationship and marriage where we wanted to start a family. All of a sudden I felt I was surrounded by pregnant women or babies in strollers all the time. All I could think about were babies and a pregnancy. It didn’t take very long for us to become pregnant, and before I knew it I was growing a little life inside of me and we were excited/terrified/looking forward to the future of our little family. Until the very end, I had a picture perfect pregnancy. Very little nausea, minimal aches and pains, and other than being a bit uncomfortable by the end, it was a great experience. I had to be induced due to a medical complication (cholestasis), but the induction didn’t go as planned and I ended up having a C-section after 19 hours of labour.

She was finally here – 8 lbs of hopes, dreams, and love. After we got out of the newborn fog, seeing all of the new things she was learning every day and interacting with her kept my heart full. Seeing the man I love become a father made me fall in love with him all over again in a way I didn’t know was possible. Life was perfect. If I am being completely honest with myself,  I was starting to feel concerned about Monkey not reaching milestones from about 14-16 months onward. She did not walk until she was 17 months old, her babbling had decreased a bit, and she started to repeat a lot of phrases from 18 months onward. She wasn’t formally diagnosed until she was 3, because she met all of the checkpoints on the developmental checklists with our doctor. Our doctor told us, she is just a late bloomer…she will get there. I wish I had gotten her assessed earlier, but I can’t live in the past and need to be here in the present moment as much as possible.

Here is the thing: I see myself surrounded by babies and pregnant women again. I think about having another child all the time. I know that there are certain things (like my masters degree) that have to be finished before I even entertain the idea (I know my limits), but now the decision is so much more complicated. Once you have one child with Autism, the chances of having another child with Autism are 20%. 1 in 5. That is a very real possibility that we need to contend with. Not only that, but there is a possibility that our next child could be on the severe end of the spectrum. I don’t know if J and I could handle the assessments, the wait lists. the IEP meetings, the ABA and the financial implications all over again. I don’t know if I have enough fight to start from the beginning while still fighting for everything that Monkey needs. J has expressed this fear to me and being the worrier that he is, I can understand where he is coming from.

Our basement storage area is exploding at the seams because I won’t throw any baby items away. Clothing, bottles, bibs, a stroller…all things that Monkey doesn’t use anymore, but things that I can’t bring myself to sell or donate for the possibility that we might need them again one day. I know that if Monkey was neurotypical, we would be having another child. Autism has robbed out family of so many things…and it may rob us of having a second child as well. If we choose to go ahead with it, does that make us selfish? If our child does end up being neurotypical, how will his/her upbringing be impacted with an older sister on the spectrum? Once J and I pass on, is it fair to them if they end up becoming her caregiver? Then of course, there is the thing that we don’t want to think about…what if our next child is on the more severe end of the spectrum and will need full time care for the rest of their life? There are so many things to consider.

Trying to use logic with a matter of the heart is so difficult. I always thought that I would have two children – having a close sibling relationship is something that I was so happy I had growing up – are we taking that experience away from Monkey? There are so many questions and things to consider, and we don’t have the answers or a decision yet. This is yet another way that Autism impacts families and a reality that we need to live with every day. For now, I will finish my degree and we will wait, but I am not getting any younger. For now we need to concentrate on getting Monkey ready for Junior Kindergarten in September – a stage that I have a LOT of other worries about, but that is another post. Right now, I am using this Disney song lyric to push me through:

“No Matter how your heart is grieving, if you keep on believing, the dreams that you wish will come true”.

Tears of Joy



Earlier this week we were having some major behavioural issues with Monkey. They tend to be exacerbated when she doesn’t sleep well the night before (because…toddlers.). Picture, screaming, hitting, whining, and anything else even when we asked her to do simple things. Luckily, the past few nights have meant better sleep, and she wakes up happy and is much more adept to following instruction.

Most of Monkey’s communication is echolalia and scripting from television shows, books, or what other people have said. There is very little functional communication with us, other than asking for things. She will say “More water”, or “more watch peppa pig” for example. We have been trying to shape this behaviour and asking her to say “I want” in front of her requests. She does this fairly well now, but still needs reminders every now and again. However, there is very little conversational communication with us – which is usual for a typical 3.5 year old.

Last night after bath time I was changing her into PJ’s and brushing her hair. She grabbed my phone on the dresser and said “Let’s call Amma” (what she calls my mother). I was stunned for a minute, and we went on Facetime with my mom..the she said “Let’s Call Baba” (what she calls my father). Then my dad came into the screen and they were laughing and playing and making silly faces. After a while she said “Let’s call Mamoo” – (what she calls my brother). I was absolutely floored. The fact that she knows who these people are and said this spontaneously means the world to me. This was the first functional communicative sentence that she has made without prompting!

After the phone call, she went to brush her teeth and said “I’m brushing my teeth”. The fact that she used a proper sentence and pronouns is HUGE! We showed her lots of praise and J and I looked at each other with shock and joy.

J put her to bed last night, and I asked for a kiss, and said “goodnight, I love you”. Normally, J has to prompt her to say “I love you Mommy”. But she said it on her own with no prompting. This was the first time that my child said “I love you Mommy” on her own. She has said this to me before, but to say it with no prompting or simply repeating it back shows so much progress. I closed the door and wept tears of joy for a good 10 minutes. 4 months of therapy and thousands of dollars aside…our Monkey is able to communicate with us more and more every day.

To some this is a small thing, but when you can’t communicate with your child – it becomes a moment that will be etched in my memory forever. I know she is smart and that her vocabulary is expansive – we just need to help her to bring it out. There are days that we struggle – but the good days and the good moments are the things that pull us through.

Tough Love

I remember when Monkey was about 4 months old and the sheer exhaustion of having a newborn started really weighing on J and I. We were getting no more than 3 hour stretches of sleep a night and there were at least 5-6 wake ups and she would take forever to get back down. Couple that with 20 minute micro naps during the day and the banshee screaming that would take place during the late afternoon/early evening and we were at our wits send. We knew we needed to sleep train…for everyone’s sanity.

We researched various methods and decided on one that would work for us. I remembered when we tried it that first night and within 20 minutes I was ready to break the nursery door down with an axe and break in…but we resisted knowing that in the long run, it would help her (and us). Sure enough, after a trying couple of weeks,  we were all sleeping better and Monkey was only waking up 1-2 times to nurse and then go right back to sleep. All of us were happier because we were better rested and could enjoy each other’s company that much more.

Fast forward to today, and lately we are dealing with a lot of attention seeking behaviours from Monkey. Both at daycare and at home in the forms of screaming, crying, as hitting when demands are placed on her or when we say to to things that are asked for. After speaking with the Behaviour therapists, we agreed that we needed to put in a plan of action. Monkey needs to know what is expected of her, and what the boundaries are…not only for safety, but also to function in every day life. 

Today Monkey was eating dinner and after dinner I offered a cookie as a special treat. She wanted to get up and eat the cookie somewhere else, but I said that the cookie would need to be eaten at the table and sitting down. She refused, so I took the cookie back and a tantrum ensued. 

J and I looked at each other and agreed that we were not backing down on this: there was an EPIC tantrum. Our therapists mentioned that when we started ignoring unwanted behaviour, she would go through an extinction burst – or previous reinforced behaviour that would increase because the normal action wasn’t working. 

We ignored her, and didn’t make eye contact..and she screamed and wailed and cried for almost 15 minutes. There were periods of calmness however (which means it is an attention seeking behaviour thing rather than a full meltdown). Once she quieted down…after 5 full minutes we lavished her with attention and praise. She asked for a cookie to which I said ok, but you have to sit down first. She sat down and ate it with no problems. 

It was almost exactly like sleep training…I wanted to give up and scoop her up, but I know that in the long run this is best. There will be lots of times where people will say no or ask her to do activities that she might not want to do, and she needs to know how to handle them in a functional way.

So right now, it is tough love, and it is HARD, but I am trying to remember the place we want to get to after the hard part. The tomorrows are always the things that will get me through today.

I See You

This goes out to all of those parents whose children have special needs – not just autism but all physical and developmental delays and exceptionalities. I want you to know that I see you.

I see the tiredness in your face from yet another sleepless night. This tiredness comes from not just a night or two of bad sleep but weeks and months of not sleeping more than a 5 hour stretch (if you’re lucky). I see you when you get up at the crack of dawn every morning ready to do it all again.

I see you reading articles and books, posting in online support groups and trying to gather as much information as possible at all hours of the day. I see you trying to figure out what therapies and supports would be best for your child all while figuring out how you are going to afford it all.

I see you filling out piles and piles of paperwork. All of this paperwork translates into meetings and assessment after assessment. I see you trying to juggle home life, work life and this new life that requires you to juggle everything without letting any balls drop.

I see you become the best damned project manager there is – there is no amount of training that can prepare you to be a special needs parent, but when you are forced to become one I see you struggle but find a groove to make it work and thrive.

I see you have conversations with other parents, and I see you quietly stop talking and look down at your feet as others talk about milestones or amazing activities their children are doing. I see you fight back tears as other parents complain about their children that talk too much or how exhausting it is that their children always need their attention. You see, they don’t know what it is like to desperately want a meaningful interaction with their child. It isn’t their fault of course – but I see you giving them the benefit of the doubt.

I see you celebrating small victories and I understand how amazing it feels when you have moments of connection with your child. I see you riding these highs and giving you strength to keep at it tomorrow.

I see the bad days too. I see you hiding somewhere to cry – away from your child and your partner because there has been just one bad moment more than you can handle in a day.

I see you and your partner have some difficult conversations. Some days, you are just going through the motions, and others you celebrate together. If you are lucky (as I am) this experience will bring you and your partner closer together than ever before and you will learn more about each other through this  – no matter how well you think you know them.

I see you at the park, or the grocery store, or a birthday party trying to have a normal family outing, but knowing full well that this normal experience could change on a dime – and being prepared for this at a moment’s notice.

I see you hearing the silence. This is a part of the journey that is sometimes the hardest. The silence is from friends and family members who don’t talk about your child and your experience. The ones that tell you that you are over-reacting and that your kid will grow out of it. Or, even worse, they pretend that it doesn’t exist. You wonder how they can pretend that something doesn’t exist when it consumes your every waking moment.

Don’t focus on the ones that are silent. Talk and laugh and focus on your true friends and family – the ones that will be there for you no matter what. Look around you – you know who they are.

Most of all I see your love. Your love is what drives you to get out of bed everyday and try again. Your love is what your child sees most – even on days where you think you could have done better. Your love is the strongest weapon in your arsenal.

I see you – and you are not alone.

Not Knowing When to Hold ‘Em or Fold ‘Em


Monkey is our first child – so every new parenting experience has an autism lens. We don’t have any experience parenting a neurotypical child so (like any first time parent) everything is new and we deal with things as we get them. Given that pretty much everyone around us is neurotypical, it makes parenting that much more of a challenge. There are some things that we deal with that others deal with too (because…toddlers), and there are other things that we deal with that people don’t have advice for – because they don’t have the experience of parenting a neurodiverse child.

Lately, I have been dealing with a lot of hitting behaviours from Monkey. It seems that she is doing it for attention, and I am trying to follow the behaviour plan given to us by our Instructor Therapists, but it has been increasing and I am not sure what to do about it. The more I say “no” or try to not give her attention, the more the behaviour is increasing. It is mostly with me rather than my husband J for some reason. We had a crazy weekend with a family wedding, other events, and not enough sleep, so I have no doubt this is contributing to it, but  I am trying to balance the therapy goals with parenting and it is HARD! On top of everything – J and I never know how much of Monkey’s behaviour is the fact that she has autism – or the fact that she is three – it is hard to figure out sometimes. Let’s face it – three year olds aren’t exactly sunshine and rainbows all the time!

While I know that friends and family mean well by offering suggestions based from their experiences – I know that often these will never work because they are giving advice from their own experience without the lens of autism. I do know that consistency is key when dealing with parenting on the spectrum – but I also know that it might not always work out perfectly – and that I need to be easier on myself. A couple of slip-ups are ok as long as MOST of the time, we are being consistent in our reactions to less desirable behaviour.

In terms of school stuff, we are meeting with her therapy centre to work out goals to have her best prepared for the start of Junior Kindergarten in the Fall. Every day I wonder about how she is going to do – how will she adjust to a new routine? How different will she be from the other kids? How behind is she developmentally and academically? Will she deal with bullying? There are so many unknowns. I just don’t know and it makes planning for the future that much more difficult. We don’t know if Monkey will be reliant on us for the rest of our lives, or if she will be able to lead an independent life of her own, but it is something that I worry about every single day. I try to live in the present as much as possible, but there are always little voices in my head wondering what the future will bring. We are doing our best to calm those voices, but some days are harder than others to do this.

School Prep



Yesterday we had our initial intake meeting or case conference at the school Monkey will be starting at in September (I still can’t believe she will be in JK this year).  Around the table we has the Principal, Vice-Principal, SERT (Special Education Resource Teacher), a Kindergarten Teacher, an resource teacher from the school board, staff from Monkey’s daycare, one of her ABA therapists , a person from the regional supports team and us – Monkey’s parents. So, it was quite the meeting. We discussed Monkey’s behaviours, and I even made an “All About Me” handout which explained some strategies to communicate with her, interact, and outline where she needs assistance.

While she has made huge improvements in her communication and skills, there are still areas that need to be highlighted in order to get the support that she needs in the classroom. There have been lots of instances where she has shown escape behaviours (it is common for her to run down long hallways and escape when demands are placed on her), and also hitting other adults as well as peers (not hard, but generally to receive attention). We are working diligently to reduce these, but she still needs substantial help in these areas. Toilet training is still being worked on, and about 90% of BM’s happen on the toilet, but pees are another story. We are working with an Occupational Therapist to work on her dressing and manipulating clothing as well as toileting, and is one of our primary goals to master before school starts.

Based on these, and the fact that Monkey has a diagnosis, there will be an Educational Assistant (EA) in her classroom to help her throughout the day, but will not be dedicated to her only. Our goal was to get 1:1 support, but we also know the realities of the education system and the fact that special education funding is getting pulled back every year. We wanted to give the most accurate portrayal of Monkey without anything sugarcoated – because these educators will need to deal with the good, bad, and ugly so honesty was important.

I am excited for her to start this new chapter, but I am also terrified. I want to see her gain new skills and love school and learning, but I also know that the things that may come easier for other children will not be easy for her. I am terrified for school bullying – I am terrified that she will feel like an outcast and won’t fit in with anyone. But, I also know that this is necessary for her to figure out who she is and find the things she is passionate about.

We meet with the school again near the end of August to give them updates and what skills she will have gained over the summer to give a more accurate picture before school starts. I know that the school will then decide whether a 1:1 EA is needed, but you had better believe that I will fight for one if she needs it – because that is my job. If that means I come off as a giant bitch then so be it – because I will do whatever I need to to ensure her success and support.

After she has been in school for a month or so, an IEP will be developed with her teacher and the SERT at the school. Multiple people have told us that we do not sign until we are happy with it. Our therapy goals over the next few months will be geared around her starting school and getting her ready to interact with peers and activities in a classroom environment. And just in case, I had better sharpen my mama bear claws too.

Two Worlds

Love it !:


It has been a while since my last blog post. Part of that is that there were a lot of things going on, not only with Monkey, but also personally and with life in general. I am completing a MBA part time and the end of term is always crunch time for me. Add it all of Monkey’s therapy appointments and other things and it can get down right overwhelming. In any case, school has started for the term, but I am a little more relaxed and can hopefully get back into writing a little more regularly.

Autism Awareness Month was important to us this year, and I grappled with the decision of “going public” so to speak on Facebook as only close family and friends knew about Monkey’s diagnosis. I spoke with J about what his thoughts were about sharing Monkey’s diagnosis, and he challenged me on it. He said, “technically, it isn’t our information to tell…it’s hers. She needs to provide consent. How will she feel about it in a few years?”. I thought about that, because those are certainly valid points – and being careful on social media is key these days. But, then I said – what message are we sending to her if we “hide” this? That she needs to be ashamed of her Autism, or that her behaviour is “weird”. He agreed, and I started month-long educational posts for the month. I got a lot of great feedback, and some from people that I haven’t heard from in years. They were thanking me for information, and answering questions that thy were afraid to ask.  I am glad that I did it, and now know at least a little more intimate slice of our lives.

Monkey has come so far in two months of therapy. She is engaging in more social play with her peers, participating in group activities, and her spontaneous language skills have been improving and increasing. She has been working so hard, and we are so proud of her. I was thinking the other day about how I will never know what autism feels like – as much as I want to and desperately research…I will never truly understand it. While thinking about that – I thought about what I was asking of my little girl. I am asking her to live in two worlds at once. To live in her neurodiverse and colourful world which she understands while at the same time being in our world where everything seems a little bit different and confusing. Take that in for a second…imagine having to do that every single day – it would be exhausting.

But every day she manages to do it – all with a smile on her face. The more I think about it, the more I am amazed by her. I get glimpses of her world every day, and the moments that she invites me in are the ones that I cherish.

Celebrating Small Victories


Monkey has been in therapy for almost 2 weeks now – and we are already starting to see improvement. We get daily reports from her Instructor Therapists and there are more and more successes every day! She can now sit in circle time with her peers, imitate actions and is even motivated to start table work which is great! It helps that Monkey is HIGHLY motivated by Goldfish crackers, so using those are a great reward for her. I remember initially reading about ABA/IBI therapy and getting a little turned off because at the beginning, it is a lot like rewarding a dog through training. But, I understand it now, and since it is something that motivates her, right now they will be used heavily, and she will be weaned off of them once she begins to make her way through the various ABLLS programs.

Monkey has always liked to stick her finger in our noses and say “nose” or in our ears and say “ear”, but when we asked her “Where is your nose/mouth/ear/head?” she would not respond with anything. She started the same thing yesterday, so I asked her “Where is your nose?”, and she pointed to her nose! I then followed up with “Where is your mouth/ears/feet/hands?” and she pointed to all of them. I looked at J and we both had tears in our eyes…because she was interacting with us and answering questions  – which she has never done before. Of course, there is a long way to go, but I am going to celebrate this small victory!

This Saturday J and I will be going in for a bit of parent training ourselves so we can be as consistent as possible at home. Monkey is going to be off therapy for a week (due to March Break), so we want to ensure that we are following therapy guidelines as much as possible. I cannot wait to celebrate all of the other small victories!

Overwhelmed is an understatement

So, it’s been a while – over a month in fact. Between working full-time, doing my MBA part-time and figuring out all the options for therapy for our Monkey over the last 6 weeks things have been nuts! So, where are we at? We heard back from the regional provider that Monkey was deemed eligible for IBI funding, which was a relief. But, it also meant that we are on a wait list. A list that can take over two years (maybe longer) before her name comes up. In addition to this, there are all sorts of changes going on in Ontario with the launch of the Ontario Autism Program and nobody knows what is going to happen – even though the program is due to launch in June of this year. Yes – that is three months away. It is very disconcerting to say the least because, as with everything else about ASD it leaves us with more questions.

Some good news though – we applied for the Disability Tax credit through the Canadian government and got approved, which allowed us to receive the credit retroactive to Monkey’s Birth. In addition to this, we also received increased funding for the Child tax benefit, also retroactive to her birth. This leaves us with about $10,000 to get therapy started. This is a relief, but since we want to start her in as many hours as possible, with 15 hours a week, this means that this money will last for approximately 4 months. So, we are still moving forward with using some the of equity in our home to pay for therapy. Likely, or tax refunds will help ease the burden as well for at least a little while.

I find myself feeling guilty over money right now. We had booked a family trip to Great Wolf Lodge months ago before Monkey’s diagnosis, and if I am going to be honest it seemed frivolous to spend that money. I am finding myself equating amounts of money to hours of therapy. We are not extravagant people by any means, but even ordering take-out for our family (which might be equivalent to $50), I find myself saying – “that could pay for an hour of therapy.” I am trying to not be so hard on myself – and we generally manage our finances fairly well – but this guilt is overwhelming. In addition to this, since last July I have lost 40 lbs (done in a healthy way!) and i need new clothes (pants falling off you is not exactly professional in the workplace). I allowed myself to buy a belt because I figured it would at least keep pants up, even if I look a little frumpy. I know I need to allow these things – and with everything else if I am too tired to cook, it is alright to order out – we are doing everything we can.

We have found a wonderful therapy centre that Monkey started at this week. They will be coming to her daycare for 2.5 hours 4 days a week and she will do 4 hours in the centre on Saturdays. Once the summer hits, she will move to two full days at the centre and three days a week at her daycare. I am looking forward to seeing results from her therapy. Our daycare has been wonderful and accommodating and the centre director and staff have been wonderful as well. I feel very happy and relieved with our decision and the fact that we aren’t in limbo waiting for something to happen.

Through all of this – the thing that is getting me through is a smiling exciting face who screams “Mommmyyyyyyyy!!!!” when she sees me. I have to stop myself sometimes for impromptu dance parties or tickles because they fuel me to move forward more than anything. I will hold this little hand and guide her as best I can – but in reality I know she will guide me where she wants to go, and I will always follow her lead.