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.

Halloween and Celebrating Small Victories

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Halloween was a few days ago. And if I am being honest, I was looking forward to it and dreading it a the same time. I was looking forward to trick or treating but also worried that Halloween might be too much for her. I know that she can be sensitive to certain sounds and lights, so I avoided any house that had even somewhat scary decorations just in case. Her costume for daycare was a cowgirl (jeans, a plaid shirt, boots) and a cowboy hat – which I am very glad I purchased for $2 at the Dollar store because she never wore it. Of course, go figure she has been putting it on since Halloween (toddlers and their logic…haha). Her costume for the evening was a monkey (hence her nickname) which I purchased off a local buy/sell page for $5. I did not want to commit to spending any more on a costume that I wasn’t even sure she would wear.

While she didn’t like the process of getting into the monkey costume, once she was in it and saw herself in the mirror she was smitten (and making hilarious funny faces at herself). Sometimes Halloween for children on the spectrum can be a bit much – maybe they don’t want to wear a costume, or they don’t want to give eye contact and ask for candy, or they are non-verbal and may seem miserable but they are actually having the time of their lives. We started at a few houses, and I had to prompt her to say “trick or treat”, “thank you” and “Happy Halloween”. One benefit to someone with echolalia is that after a few houses, she was golden. She absolutely loved it and would smile with anticipation at every door and she melted hearts with every “Happy Halloween” as she was leaving. We had a really great night, and while we were only out for 30 minutes, I was so proud of my little girl and excited that she was having a great time.

Other families might not even blink over this, but I consider it a huge victory and one that I should celebrate. I can’t wait until next year 🙂

Tonight was hard…

Tonight started off like any other night. We had dinner, played, then it was time for bed. I changed Monkey into her pyjamas and we went to the guest room to jump on the bed – all standard normal things. We bathe monkey every other day, so J had started the bath because she was due for one. I said, oh I already changed her into PJ’s…let’s just wait another day. 

By this point she had heard the water running in the tub and was eating excited for her bath (she loves bath time). When we started draining the bath, and saying “sorry hunny, not tonight”. What then occurred was a full blown meltdown. Now, toddlers have tantrums all the time but this one was different. My heart broke for her because I realized just how important routine is to her. If she thinks something is about to happen, and that gets disrupted we enter meltdown zone. 

It took her almost 30 minutes to fully calm down and all I could do was hold her. We both had tears streaming down our faces, and then finally I started reading a book and she calmed down and we played a little and I put her to bed. A million thoughts went through my head. Before knowing she was in the spectrum I would have let the meltdown happen and I would have not given into it because I didn’t want to reward the behaviour. 

Does this mean I cut her some slack? Does his mean every time she has a tantrum I will be giving in because it is difficult for her? Am I going to raise an entitled person if I give in every time? Parenting is hard enough, but parenting a kid on the spectrum has its own challenges. As with everything i guess we have to take it one day at a time. 

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.

The Supposed To’s, jealousy, and guilt

I am still dealing with a lot of emotion surrounding Monkey’s diagnosis. As any parent does, you have ideas of what having a child will be like and the relationship that you will have with them. Of course, reality is so very different than our thoughts but there are still some times where I would dream about Monkey’s future and wonder what subjects she will like in school, what her friends will be like, or what she might do as a career one day. Since getting the diagnosis and starting his journey however I find it difficult to think about these things.

I worry about putting these feelings down in print as I worry that societal expectations deem that these feelings are hurtful or that I should be counting my blessings instead. But, since this place is a tool to help me deal with my emotions I am going to be honest here. Of course, I love my daughter immensely and she has completely changed our life in all of the good ways. I can’t imagine our life without her. 

I get caught up in the supposed to’s. For instance, by now we were supposed to be able to have conversations with her. We are supposed to have lots of pretend play. We are supposed to be dealing with lots of simging and loudness (that we get…haha) and getting glimpses of her interests and funny sayings. When I see other kids her age converse with their parents in these ways…I get jealous. The thing I desperately want more than anything is to be able to talk to her, and have her respond to my questions. It sounds like such a simple thing, but I wish for the day when that happens.

At the same time I have these jealous feelings, I also have immense guilt. Since getting her diagnosis, I have been reading a lot of other blogs from parents of children on the spectrum. I feel guilty because some of these parents are dealing with children on the more severe end of the spectrum, who may be non verbal or have significant delays, and the things that they are wishing for are the things that my daughter can do. I read their experience, and I think to myself, I should not be feeling this way. Some others have it so much harder than I do…I should be counting my blessings.

Of course, I do count my blessings…every day, but I think these feelings are natural ones to have and I need to work through them. I need to give myself time to grieve the loss of the supposed to’s so that I can be ready for figuring out how to communicate and connect with my daughter. I still yearn for the day when she asks me a question, but until then laughter, tickles, and hugs will have to do 🙂