Not Knowing When to Hold ‘Em or Fold ‘Em

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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.

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School Prep

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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

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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

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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.

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A New Year, with new possibilities

A lot has happened since my last post. After diagnosis, J and I decided to take a few days off from all spectrum related research and just enjoy the holidays with our monkey. We had a wonderful Christmas Eve at home where we spent the day in our PJ’s and watched (or tried to with our little one) some Christmas movies. It was wonderful, and when we went back to work, we felt refreshed and ready to continue on this ASD journey.

We live in Ontario, Canada, so the next step after a diagnosis was to have an Autism services assessment appointment to figure out if Monkey will be eligible for IBI services, that are funded through the government.In Ontario, there have been many changes to this funding and a new Ontario Autism program which is due to launch in June 2017. There was some transitional funding that we were hoping to take advantage of, but we learned because Monkey will not be turning 5 until November 2018, we are not eligible for it (only to those turning five before March 31, 2018 are). Which means that if she is eligible for IBI services, she will be put on a wait list that is a minimum of 6 months long, but since nobody knows if this program will even launch on time, or can answer any question about wait lists, it is more likely to be 8-12 months.

Can I tell you how excruciating it is as a parent to know your child needs something to help her become better, but then be told: sorry – you can’t use it now (when she is at an age that IBI is best proven to work for). The system is so broken. J and I have talked, and since the therapy is expensive ($45-50 an hour x 18-20 hours a week = you can do the math), we have decided to dip into the equity in our house in order to fund therapy while she is on the wait list.

We have been back and forth about the issue – maybe giving her a few hours a week will help, or we can learn things and take a course and do it ourselves for a while – but it all came down to this: we want to do everything in our power to help our little girl, and if means going into debt – so be it. Not every parent will come to the same decision as us – but we have made our peace with it and are moving forward. I feel like when you are a special needs parent – you can’t just be a good parent – you feel pressure from all sides to be an exceptional one. I want to get her help in the shortest amount of time, and sadly that means I need to enlist the help of a professional. As a type-A person, I need to know and see that she is making progress through goals and milestones reached. 

As full time working parents, and with my completing my MBA on a part time basis, there just aren’t enough hours in a day to do it all. Short term financial pain for long term gain is what is needed, but even though we have made this decision, I still feel guilty that it isn’t me, but someone else who may produce these changes in my daughter. Only time will tell of course. 

Further along the track we go…chooo chooo.

Diagnosis

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Last night we met with our Psychologist to get Monkey’s final assessment report. While none of the information in the report was terribly shocking (as we were witness to all aspects of the assessment), there were a few surprises. She has been officially diagnosed as having:

  1. Global Developmental Delay – She is significantly delayed in language, fine and gross motor skills, and cognitive development (about 1- 1 1/2 years behind where she should be.
  2.  Autism Spectrum Disorder with Global development delay and language impairment

We were expecting the ASD diagnosis , but not GDD. Our psychologist explained however that the developmental assessment that she did (as she did 3 different ones) looks at development on its own, and does not take the Autism diagnosis into account. Even keeping this in mind – it still means that she is further delayed than we though, which is distressing.

Our psychologist did mention however that the behaviours that she did see Monkey make mean that she is a very good candidate for IBI/ABA because she shows some rigidity, but not a lot, and she can be motivated to do tasks when there is a reward she really wants in the end. We live in Ontario, and the next step is to apply for Ministry funding of IBI therapies. The issue in funding however, is that she needs to be deemed serious enough to need IBI, but not so severe that she might not make the “proper” gains. I find this appalling and ridiculous – so while I am thankful to live in Canada where funding is available, there are so many families who simply won’t qualify for it. IBI is really the only proven treatment for Autism – especially in the toddler/preschool age group. Right now, all of our eggs are literally in this basket.

Unfortunately, IBI/ABA is not covered through either of our health benefits, and it comes at a significant cost. IBI typically ranges from $45-50 an hour, and 18-20 hours a week, which means it would cost anywhere from $800-1000 a week. To put this in perspective – we pay $1000 a month for full time daycare.

There are so many unknowns right now – but we want to get Monkey into IBI as quickly as possible. We are toying with the idea of starting her with a small amount of ABA (5 hours a week or so) just to get her in something. Anyone out there recommend this, or should we wait to see if we have been approved for funding? We are gearing up for the holidays and now that I am off work for two weeks, I know I will be spending much of it researching and trying to figure out what to do. The more answers we get lead to more questions…..

Grief

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Since Monkey’s diagnosis I have had ebbs and flows of different emotions. Some days I feel completely overwhelmed, break down and want to hide in a hole. Other days, I spend my days researching treatments, autism therapies, and contact as many people as possible  and try to educate myself and help Monkey out as best as I can. I think that my husband J and I have done a pretty good job of staying positive for the most part and throwing ourselves into research – but there are bad days too.

Yesterday, we attended a birthday party for a very good friend’s daughter. I find it hardest when I see just how different Monkey is from neurotypical children her age. I see all of the different milestones and things that other children can do and I grieve for the child I thought I would have. Every major milestone or Facebook update I see with my friends’ children I wonder if Monkey will ever get there. I realize that I am grieving for a non-existent future experience, but some days feel like I am missing out. I realize now that this is an experience that all ASD parents go through and that it is alright to grieve and is a completely normal response. Every parent that I have met so far on a similar path has told me this – but I still feel like an awful mother and am filled with guilt when I feel this way.

Then – I shake myself out of it (or try to) and tell myself that Autism is something she has – but she is not defined by it. She is still the most amazing little girl who loves to dance, gives the most wonderful hugs, and has a smile that can light up the darkest room. I have joined a lot of Autism parent support groups on Facebook – and I came across this and thought it was perfect.

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

So, we will continue to appreciate the small victories and the amazing little girl that we have – because she’s awesome.But, at least for a little while I know that I will still dream about what could have been – but I will stop and bring myself back to the present – because there is a little girl who needs cuddles, tickles, and kisses and puts a smile on my face every day – and she needs me to be the best version of myself that I can – for her.

Assessment and Next Steps

 

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Well, monkey had her assessment with the psychologist last week. I was looking forward to her going through it as well as dreading it at the same time. This is it. This will tell us where Monkey falls on the spectrum as well as what she needs to help her meet her individual needs and thrive. There were highs and lows with the testing, and we actually saw a couple of behaviours we haven’t seen before, so that was interesting to see.

Day 1 – The first test was the Bayley III screening test which is designed to measure the cognitive and motor development and test behaviour of toddlers up to 42 months of age. This involved a bunch of short game-like tasks involving puzzles, dolls, identifying photos, and eventually gross and fine motor skills. One thing that Monkey did was pick up a plastic teddy bear, hug it and say “my baby”. She has likely seen this somewhere, but it was the first time I have seen anything like that as she has been disinterested in stuffed animals, dolls, or any other pretend play that involved taking care of a “baby”. I admit I was shocked when it happened, and it warmed my heart a little. We could clearly see where she had difficulties with certain tasks and in particular receptive language. This test was almost two hours long, and she would not sit still (she never sits still) – so we were literally bribing her with Goldfish crackers in order to get her to sit and stay focused on a task.

Day 2 – This involved a LONG parent questionnaire about all of Monkey’s behaviours and histories. Luckily, my mother was watching Monkey so we could do this in peace and without interruptions, because it would have been so much more difficult if we hadn’t. My hubby and I were pretty much on the same page for most things and our psychologist was amazing at explaining the question if we didn’t understand.

Day 3 – This was the day of ADOS. This was only about an hour in length, and less structured than the Bayley test, and it seemed to suit Monkey a little better. Since it was mostly observational, and had some toys and activities that Monkey liked – it was not too stressful (with the exception of group singing, which we already know is one of her sensory triggers).

After the tests had been completed, but not scored, we asked our psychologist her thoughts on where she thought Monkey might be on the spectrum. Obviously, she could not give us an exact area per say, but said she was advanced in some areas, and moderate to severe in other behaviours. However, the main thing was that there was no doubt that she was on the spectrum. We were prepared to hear that information – but now I have more questions and worries than before knowing that it has been diagnosed.

Next steps: we are meeting with a Family support coordinator next week from our local Autism community chapter to figure out where we go from here. The one thing that strikes me about ASD diagnosis is that there is no manual. Nobody tells you what to do – it is up to you to navigate the system, sort through the crazy amounts of information, and try things to see what sticks. This will be a long journey with a winding path, but having someone at least give us some direction will help. Off we go – I better pack extra goldfish crackers.

Community

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More than anything in my brief time being exposed to the Autism community is the amazing people that I have come across. Many of these people I haven’t met, but have reached out to me via this blog or in other ways. I have been overwhelmingly been welcomed and been given advice by people I would have not otherwise met. Just recently I saw a posting in a local Mommies chat group on Facebook of someone asking for help as their child was just diagnosed as on the spectrum and had no idea what to do next. The outpouring of support and comments was so wonderful to see.

When your child is diagnosed with Autism there isn’t a handbook or list of things to do next, and sifting through all of the information between ABA/IBI, Occupational Therapists, Speech therapists, and IEP‘s is overwhelming. I noticed that one of the people who commented relayed her experience with her 4 year old daughter, and since he daughter was a similar age, I sent her a private message to ask her a few questions. M was so warm and understanding, and after exchanging a couple of messages, she offered to meet me for coffee to go over everything that happened with her daughter. This was a complete stranger that recognized exactly what I was feeling and was so kind to share her experience.

I met M for coffee and we talked for TWO HOURS! I have never met this person before, but she brought along all of her daughter’s forms and the process that she went through after diagnosis and it really was eye opening and information that likely would have taken me much longer to figure out on my own. I will be forever grateful to M for meeting with me, and I hope that one day I can pass the torch to someone else who might be in my shoes down the road.