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!

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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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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.

Signs and Stigma

 J and I have begun telling our immediate family and close friends about Monkey’s suspected diagnosis and how we are moving forward. The reactions have been a bit of a mixed bag to be honest, but the one constant out of all of them has been “She is still so young, she will catch up”. While I agree that those very words went through my head at times, deep down I think I knew that Monkey was different from the time she turned about 2.

I have mentioned this before, but autism is different in every person who is diagnosed, so these are really just her own unique signs, but these ones are pretty constant.

  1. Reciting lines from her favourite cartoons (mostly Bubble Guppies and Peppa Pig). This is called echolalia, meaning that she will recite lines from these shows even months after watching a specific episode
  2. Related to the first one is generalized echolalia. If we ask Monkey something, she often repeats it right back. Our speech pathologist says that she does this because she doesn’t truly understand what is being said.
  3. SLEEP. She is generally a fairly good sleeper (about 80% of the time), but she take HOURS to go to sleep. She is generally scripting from shows or books but will take 2-3 hours to fall asleep. I know she is not getting the sleep she needs, but right now we are unsure how to help the behaviour.
  4. Repetition – this is in a variety of forms. I have noticed that she will line up certain toys in a certain order, and if I change that order she gets very upset. She also must close an open baby gate if she walks past it.
  5. Not responding to her name. At first, I thought this was just a regular toddler thing, but there are times when she doesn’t seem to understand that it is her name.
  6. Loud singing. She absolutely loses it during Happy Birthday or any kind of group singing and is sensitive in this sensory way.
  7. Crowds – If she is in a stroller or wagon she is ok, but otherwise if we walk somewhere with a crowd, she immediately retreats and wants to leave
  8. Playing with other children – She is ok playing with 1 or 2 other children, but any more than that and she retreats and plays by herself

I could go on, but these are some of the things that she does that are red flags for an autism spectrum diagnosis. Some people assume what this will be “fixed” or “cured” because she is so young. While we will do everything that we can to help her get the help she needs, I know that this is a life-long condition. Nobody is cured from autism, but rather uses tools to help them function with their autism. Once we figure out exactly where Monkey is on the spectrum, we will have a better idea of how to help her specific delays and encourage her strengths. It is hitting me that this is a life-long condition that will evolve as time goes by. So, obviously, the therapies will need to be constantly monitored and changed as she gets older. It is overwhelming to think about. Right now, my focus is ensuring that we can do everything we can to have her start school next September. It is hard not to wonder farther out from that though. She will be different, but not less.

How We Got Here, and What’s Next?

So, a few weeks ago we got confirmation from both our pediatrician and speech pathologist that Monkey showed signs of being on the spectrum. In order to get a conclusive diagnosis though, you either need to see a developmental pediatrician or a psychologist. We live in Ontario, Canada which means that our health system fortunately covers this service, however the wait-list for the assessment and diagnosis is substantial. We were officially referred at the end of September and were told that it would likely be at least a year before the assessment could actually start. ONE. YEAR.

Given that Monkey is supposed to start school next September, that did not sit well with me. Thankfully, both J an I have good jobs with amazing health benefits, and I found out that we can get a private assessment with a psychologist which would be fully covered. A private assessment is almost $3000 – so certainly not a small sum of money. But, it is imperative to us that we get a clearer picture of where Monkey is on the spectrum and how to best support her.

The hardest thing for me is the unknown. Anyone that knows me knows that I am a planner. So not knowing how she will do over the next year and weather she will even be ready to start school worries me. All we can do is take it one day at a time.

Last night, J and I met with a psychologist to get the process started. She wanted to know everything about Monkey’s behaviour and things we have noticed that she does. Based on what we have told her, she told us it is likely that she is on the spectrum, but high-functioning. When people hear the work Autism…often they only think of those with significant developmental delays and  flapping arms or non-verbal. The reality is that there is a huge spectrum and some people may be quite advanced in some areas, but lacking in others. The main thing to remember is that Autism is different in every person. In the community, there is one quote which I have seen countless times:

“When you have met one person with autism…you have met one person with autism”.

Some will require assistance for the rest of their lives, others will be able to function with support, and finally other people on the spectrum will go on to have careers and families. I am now realizing how much I have to learn about Autism Spectrum Disorder (ASD) and the community.

Monkey has her first assessment appointment in late November, and the entire process should be completed before the year is out. I am feeling a bit better knowing that we are moving forward with this.

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