Tears of Joy

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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

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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.

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…..