Respite

 

It is rare in daily life that we take a break. Of course, we take vacations, and days off, and spend time away from work and doing the things that we want, but it is nearly impossible to take a break from the world of autism. There are always assessments, paperwork, appointments, report cards, meetings, behaviour plans, and scheduling (oh the scheduling) that have to take place in order for our life to run the way it needs to. So, even though we take vacations, those days are planned and Autism is always along for the ride.

Last year, through a stroke of luck I managed to get tickets to see Hamilton on Broadway (I could start a whole other blog about my love of musicals and theatre, but alas, not the subject of this post). It was almost a year in advance when I purchased them, but J and I decided that this would be a good opportunity to see if we could take a short trip (4 days) with just the two of us.

We saved our pennies for this – every paycheck $75 was put in an NYC fund and I am happy to say that money paid for our hotel, flight, and spending money while we were away. As soon as I bought the tickets I felt guilty – though I knew that I could sell them on the secondary market if need be. Putting Monkey in therapy is costing us close to $2800 a month and we are using the equity in our home to pay for it. Booking a vacation seemed selfish and extravagant and there were times when I was going to cancel the whole thing. But, we budgeted, and we both really wanted to take this trip (our first real vacation in 3 years).

We went last weekend and I can tell you that it was worth every penny and than some. J and I spent quality time together – and we even had a day where we could be completely spontaneous, which is a luxury. Monkey is the centre of our world (and always will be), but we needed a break from everything – from work, school, paperwork….and autism. We spent some time at the Museum of Natural History and I thought of Monkey every time I looked at their amazing exhibits with ocean life, animals, or dinosaurs – but we were able to enjoy those things without having to have a backup plan in place due to a meltdown or sensory overload.

We spent time together just wondering through bookstores, having a leisurely coffee, or a fancy dinner without worry of having to be back at a certain time or being conscious of timings. It was liberating. We tried as best we could to keep autism out of our conversations and I would say we did a pretty good job overall. Of course, we missed our Monkey as well and on the flight home we were both looking forward to giving her a big bear hug.

I was nervous about leaving, as Monkey is pretty set in routines so having someone else care for her while we were gone was making me nervous. The key was to keep her busy. My wonderful mother-in-law and sister-in-law took her swimming, took her for ice cream, and thoroughly spoiled her with favourite foods and lots of fun. She did incredibly well and it gave us the peace of mind to know it may be something we can do every so often.

We came home refreshed and happy to have done something just for ourselves, and now I don’t feel the slightest bit guilty about it. I think we all needed a break – a break from routines, from therapy, and from scheduling. It was only 4 days, but it was enough to recharge our batteries and move forward.

To parents walking a similar journey – take time for yourselves because you can’t pour from an empty cup. Heck, to all parents of small children – even a weekend away by yourselves will likely do wonders. Make it a priority if you can.

We received the wonderful news that Monkey’s name has come up on the wait list and we will be receiving funding for her therapy, and increasing her hours (from 15 hours to 24 hours a week). This is a relief and we know that she is ready for the increased therapy because we put in all this work over the last year. We are currently putting together her behaviour plan to be submitted – but it a relief to know that we won’t be going further into debt and can start paying off what we borrowed. Heck – maybe this means we can add a little more to that vacation fund.

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To Newly Diagnosed Families – Lessons I Have Learned

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We have been on this Autism journey for about 18 months – 18 months since we first heard the words “your daughter shows many of the signs of Autism Spectrum Disorder”. It has been about 14 months since her official diagnosis. We measure our lives in BD and AD (Before Diagnosis and After Diagnosis). Honestly, I almost can’t remember a pre-autism diagnosis world right now since so much of our life revolves around therapies, appointments, funding, paperwork, school meetings, and phone calls about autism.

I still remember the day we first heard the word autism. Even though I suspected the diagnosis prior to the appointment, having a medical professional say the word out loud was life changing. Everything moved in slow motion and we were given pamphlets and websites to visit sent on our merry way – on a journey that we knew nothing about. Then, you have a series of nothing but questions – everything from how to help her in school, how to increase communication, and how to help her work through behaviours. Then you lie awake at night and think about the big questions – How will this affect her future? Will she follow a typical path in school? How will we change as a family? How can we help her? Will she need special care the rest of her life? After those questions you go into the deep dark feelings of anger, resentment, and guilt. You wonder why this happened to you, wondering why other families don’t have to deal with this, and grieving the parenting experience you thought you would have.

These are all normal – I truly believe that every newly diagnosed family goes through these emotions and experiences. After 18 months I am not an expert about everything related to autism, but there are some lessons and things that I have learned that I would like to share with newly diagnosed families.

  • IT WILL BE OK. This is lesson number one. It seems completely overwhelming right now and you think you aren’t doing enough – but you are. There will be times that this journey will frustrate you – but just remember that your child is still your child and their diagnosis is words on a piece of paper. Use this to empower you – there will be good days and bad days but it will be ok – you will be ok.

 

  • EDUCATE YOURSELF. Scour websites and information about Autism. I recommend looking in your community to see if there are any Autism groups or organizations to start. Note that these are NOT equal. There are a lot of quack sites that are preying on uneducated parents claiming they have a “cure” for autism. In Canada, some great websites are Autism Ontario or Autism Canada.

 

  • THERE IS NOT ONE RIGHT WAY. Autism is a spectrum disorder, and how it affects your child will be differ in every case. You will need to figure out the best combination of therapies and activities for your unique amazing child. Just because something works for another family, doesn’t mean that it will work for you – but be open to it and listen to your gut if things don’t seem right. At the beginning, you will want to try everything, but you quickly learn that you have finite amounts of time and money and need to figure it out.

 

  • YOU ARE THE EXPERT. You might not know everything about Autism, but you are the expert on your child. Do not be afraid to advocate for them and point out that there will be some things that won’t work – that is ok. As time goes on, you will become more comfortable in doing this – and you will know when to get your claws out or reign them in.

 

  • IT IS OK TO RELY ON OTHERS. I have written about this before, but as a special needs parent you feel guilt for not trying to do everything yourself. You will do as much as you can of course, but do not feel guilty about not being a behavioural expert, or skilled in speech language therapy. It is ok to rely on the expertise of others because sometimes you just want to be a parent and not a therapist – and you shouldn’t feel guilty about that. It truly takes a village.

 

  • YOUR CHILD WILL STILL GROW AND CHANGE. It might not be at the same speed as neurotypical children, but your child will learn new things and conquer skills that they previously didn’t know how to. You will still beam with pride with every new accomplishment. Your child is amazing, and happy and loving and needs you to be their parent and their biggest cheerleader.

 

  • CELEBRATE THE SMALL STUFF. No matter how small – celebrate it because it means your child is making progress. Have they figured out their colours? Can they move through something with less prompting? Have they figured out how to put their shoes on? These are all amazing accomplishments – be proud!!

 

  • FIND YOUR TRIBE. Not only your existing friends and family, but find other parents with children on the spectrum. Autism can be incredibly isolating sometimes because you feel like you are going through it alone. Find the group of parents through Facebook or parent support groups. These people will understand and let you vent, celebrate, and cry without any judgement. It is truly liberating.

 

  • TAKE TIME FOR SELF CARE. This might mean scheduling date nights for you and your partner, making sure you get workouts in, getting a massage, etc. You cannot pour from an empty cup – and let me tell you Autism can be very demanding – and there will be times that it completely takes over. But, don’t let yourself become your child’s diagnosis. Go on a date with your spouse/partner and try not talking about autism – have a girls night – go do a workout. It is ok to make yourself a priority some days. Don’t feel guilty about it.

 

  • LASTLY, AUTISM IS WHAT MAKES YOUR CHILD HER/HIM. Autism is a part of my daughter, and part of what makes her who she is. There are times it makes things difficult for her, but there are also gifts if you look for them. If your child didn’t have autism – they wouldn’t be them. The challenge lies in navigating a world that isn’t geared towards them – and that is not their fault. You will learn more from your child along this journey than any other resource. They will amaze you every day and you will learn to be grateful for the experience.

 

I am be no means an expert, and I am still at the beginning of the journey, but these are a few things that I have learned which help our family deal with Autism in our daily lives. There are good days and bad days, there are days that you will think you are making tons of progress, and there will be others where skills are regressed. Be gentle on yourself – you are learning too, and there will be successes and mistakes. On thing will never change though – that there is a little person who thinks the world of you, and as long as you are together – it will be ok.

A New Year and New Possibilities

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I know it has been a while since my last post. I am not making excuses (really, I swear). I am going to try and post a little more regularly, as I find if anything it helps to get my own feelings out into the world (and for family and friends to catch up).

We had a wonderful holiday with lots of time spent at home together. It was the first opportunity that I have really had all year to relax and decompress. Thankfully, the university closes for two weeks over Christmas break, and I started the new year feeling rejuvenated. Monkey thoroughly enjoyed the break (even with the frigid GTA temperatures), but by the second week I could tell she was antsy. Like many kids on the spectrum, Monkey thrives on routine and so when that is disrupted, she often doesn’t know  how to handle things, and her behaviours tend to be more frequent and longer. This might mean, outbursts over things she normally doesn’t give a hoot about, or dealing with a few more tantrums than usual. Her holiday ended up being three weeks however, as she came down with the flu. I have to admit that it was hard seeing her so out of sorts, but I thoroughly enjoyed getting cuddles on the couch for a few days.

Monkey was so happy to go back to school, and has been interacting with her peers more and more and I think more than anything, happy to be back to her routine. With the new year, J and I thought back to this time last year – where it was very different. Last year we were dealing with the diagnosis like a bomb just went off in our world and we were trying to make sense of the pieces.

One thing that has not changed is that we are still on the waiting list for government-paid ABA services. It has officially been 13 months, with an expected 18-24 month overall wait. During this 12 month period, we have racked up about $15,000 in debt paying for therapy (not including the original $11,000 we got from the disability tax credit which was retroactive to Monkey’s birth). While this is money we did not plan on spending, I can tell you that it has been worth every single penny – and where Monkey is now from a year ago is night and day.

Here are just some of the changes that have occurred during this time:

  • Completely toilet trained (night and day) – and requires little assistance now, except some prompting through the bathroom routine)
  • Can communicate all of her wants using 2-3 or 4-5 word sentences
  • Answers questions we ask (not all of them, but many!)
  • Follows directions pretty well (“put on your boots” or “tidy up”, etc.)
  • Says hello when seeing new people
  • Eye contact with us has improved immensely
  • Can sit and focus on table work for up to 20 minutes at a time. When she started, she would not even sit and focus for 2 minutes
  • Can name her numbers up to 60
  • Knows her alphabet
  • Uses her utensils fairly well (hey, she’s still 4)
  • can draw lines and circles and colour in lines (with thick borders)
  • Will share things she notices like “it’s an airplane” or “there’s a firetruck”
  • Vocabulary has increased immensely

Of course, there is still a long way to go, but this is pretty phenomenal. We are happier because we can communicate with Monkey better, and she amazes us everyday with what she can do. The echolalia and scripting is still very much a part of our lives – but every day she learns to communicate more and more.

How have I changed in the last year? I was reflecting on this earlier today and even I am a different person. First off, I am an organizational ninja – in future posts I will share IEP binders, Monkey’s portfolio with all of her documents/reports/service providers to prove this. I generally consider myself an organized person, but when you are dealing with an autism diagnosis – tracking appointments, paperwork, and funding requires a whole new level of planning. I have also learned to appreciate the small stuff – in fact I need to appreciate it in order to not dwell on the bigger things. While some might say, don’t sweat the small stuff – I know that every day little victories are what adds up to long term change.

Most importantly – I have actually made time for myself. This was difficult in the beginning, but I know that in order to be the best wife and mother I can – I have to take care of me first. This means working out regularly, eating well, having girls nights and time for J and I to connect. I know that life is easier when I prioritise myself – which might seem odd given the narrative in our society that parents (mothers especially) need to sacrifice everything for their families. At least for me – I know that this doesn’t work.

I have learned that even when things seem impossible – you can get through it. Monkey’s diagnosis came at exactly the halfway point of my MBA program. I will be honest that there was a point where I thought I would not finish – that I would be a bad mother if I continued studying given the needs of my child. But – even when things seem impossible you can surprise yourself. I decided to continue, and if it weren’t for J’s support I would likely have quit a long time ago. I am now studying in my final semester and I know that this degree belongs to him as much as it does to me. The hard life experiences I truly believe are the ones in which you learn the most from.

I have learned that life’s circumstances can also give you some of the greatest gifts. There is a group of fellow mamas I have been introduced to that all have children on the spectrum. I turn to these women to vent, to celebrate successes, and just to chat with because they all get it. I don’t need to go into explanations – I can just share my emotions and discuss the hard stuff because they are all going through the same thing. Having a group of people who understand, listen, and celebrate with you without judgement has been liberating (and a glass or two of wine doesn’t hurt either!).

I have the best partner that I could ask for – I knew this when I married him, but with every new obstacle or stop along this autism journey – he provides support, a shoulder to cry on, and perspective – he proves every day that we are a team.

I have learned that we are strong, capable and ready to face what this next year is going to throw at us – together. Bring it On.

 

Trying…Failing…and Trying Again.

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Clearly these posts are becoming less and less frequent, though things have been busy (that’s always my excuse, I know). My final exams for over for the term and I have three more work days before I get 2 1/2 weeks off (working at a university most definitely has its advantages).

Lots of updates on Monkey. First of all – we have a 4 year old (how the heck did that happen?). This was the first year that I think she understood that she was being celebrated. We sang happy birthday, and she had a big smile on her face and wanted to get to the cake part as fast as possible. She is still not interested in presents…but baby steps. We had a small birthday party (with 9 other kids) and had it an an indoor playground which offered private birthday parties. Having the run of the place, and controlling the amount of children I think was vital for Monkey to have a good experience. She gets overwhelmed when there are too many children or too much noise, so I think this is important to consider for future birthdays. She had a blast though, and it was so great to see.

A couple of weeks ago, Monkey’s JK teacher e-mailed us to inform us that Monkey was going to be receiving the “kindness award” at a school assembly. This made my heart swell. I am so worried about everyone showing her kindness and empathy – yet here is our little girl being kind and showing the world that. She took a group shot with a few other kids from her class and held up her sign proud with a big smile on her face – it was wonderful to see. Her holiday concert is next week (though we have NO idea how this is going to turn out – but it will be an adventure!)

Autism Ontario runs special events all year rounds for people on the spectrum and their families. These are often subsidized and allow families like ours to participate in events that we might not otherwise be able to participate in. One of these was The Santa Train, which allowed us to try meeting with Santa in a different way compared to a standard mall visit. The train ride was about 75 minutes long, and included live musicians singing Christmas Carols, a train ride, cookies, hot chocolate, and a personal visit with the big guy himself for every child. Monkey still wasn’t keen on sitting in Santa’s lap – but man she was beaming when she met him. She asked for “cake” for Christmas which made all of us (including Santa laugh – sure thing kid! In short it was wonderful, and being with other Autism families didn’t make us self conscious when our kid was climbing all over her chair or getting up to walk around because everyone around us got it, and understood. We didn’t bat an eyelash when there were children around us having trouble waiting in line or took a little longer getting on or off the train. Everyone on the train just wanted to enjoy the event free from judgement and glares. It was wonderful and a memory that I will hold very dearly.

I can tell you that other than her first couple of Santa visits (the first at 3 weeks old, the second at just over a year old), the last two years have been a disaster. Last year, we even did a Sensory Santa event in the hopes that it would be a more positive experience. We didn’t try to force Monkey into doing something she didn’t want to do, but we did ask her to try it. Some might wonder why we bother with this knowing full well that there is an 80% chance it will not go well. Here is the thing: Autism may win out most of the time, but we have to try even if we think the probability of failure is high – even if all other signs point to it not being a good idea. We have to try because I just like any other parent wants my child to participate and feel included. We want to give our daughter the lesson of always trying even in the face of fear or failure because that is the only way to grow as a person. With the same sentiment, if we only do “safe activities” how is our experience with Autism supposed to grow?

Don’t get me wrong – I know that there are definitely things we will not be attempting anytime soon, but as Monkey grows up, I want to continue to push her boundaries and our boundaries little by little. 80% of the time, it might fail and autism may win out, but I am going to get back up and try again – because the times that it does work are so worth all of the failure and effort.

I am not sure how much posting I will do over the holidays, so let me take this time to wish you and yours a wonderful festive season and best wishes for 2018. We are looking forward to seeing Monkey learn and grow next year, and can’t wait to see what she does next.

Just Keep Swimming

persistence

It has been a while since my last post. Things have been a little crazy and I am almost at the point where I can breathe a little bit. I started a new job in mid-September at it involved a very steep learning curve (which is still every day really), and a busy time of year. On top of that my school term is in full force, and we have been keeping on top of Monkey’s transition to school along with appointments to therapy, the speech language pathologist, and occupational therapy. It has been a lot and I am definitely tired, but I need to get through the next few weeks and then the Christmas season will be upon us and we can relax a bit.

Lots of updates on Monkey. She has been using a lot more spontaneous language and her echolalia has been going down quite a bit (all good things). After two months, I think she is finally settled in school and enjoys it – I can hear her singing songs that she learns at school and the communication log we get from her teacher always say she had fun laughing and playing. There is increased social interaction with her peers – in fact one of her Educational Assistants showed us a super cute picture of Monkey and a friend holding hands walking down the hall – so adorable!

In order to help the school, we decided to record Monkey’s ABA table sessions so that they could get an idea of the types of things she is working on and how to hold her attention to tasks. When we got these videos J and I were blown away by our amazing girl and her beautiful brain. She has made so much progress in 8 months that it is unbelievable. She can count from 1-50 (and can generally name random numbers thrown at her), knows her letters, can sort categories of pictures, can finish sentences of common phrases, points out objects to us (like an airplane or a truck), and can actually sit and focus for 15-20 minutes at a time. Her SLP has worked with her to get proper pronunciation of words, and her OT has worked to get her to start pre-writing skills. It really is a village of people. At the beginning of this journey there were times that I felt guilty that I was not able to help her – that I should be doing more and learning and researching new treatments/therapies.

Here’s the thing: you don’t have to do everything – in fact you can’t do everything. I can tell you without a doubt that Monkey has made more progress because of the people we have surrounded her with – way more than we could have done ourselves. Raising a special needs child can be isolating – especially when you have not had exposure to the diagnosis before. I cannot tell you how amazing it is to speak with people that “get it”. Who understand your struggles and see the light in your child and their potential. I am so thankful that we have amazing professionals working with Monkey. While we still try and keep therapies consistent at home and model as best we can – I have learned that some days I just want to be her mom and not her therapist. Sometimes being silly, making funny faces, and having impromptu kitchen dance parties is therapy in itself – for all of us.

We are walking (sometimes running) along this journey and while we don’t know where the path will lead, we do know that each person we meet along the way moves us forward to better connecting with and understanding our Monkey better. In spite of it all – work, school, appointments, new jobs, setbacks, meltdowns, just keep swimming, because 10 steps forward and 4 steps back still means you are ahead of where you started.

Memories and Milestones

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It is the time of year where I start thinking about making memories with my family and celebrating milestones and special events. Tomorrow, we plan on making our yearly trip apple picking which Monkey is a huge fan of because it involves dragging her in a wagon while eating apples to her heart’s content. While she doesn’t take part in the picking (despite the forced photo op that I try and complete every year) we still do it. We go to a lovely little orchard with dwarf apple trees and a small little playground for Monkey to play in afterwards. Every time we go, I see other families with children running up and down the rows of trees picking apples and placing them in buckets and every year, I hope that Monkey wants to participate and do the same. We try and get her out of the wagon to walk and pick apples, and she will generally do it once or twice then demand to sit back into the wagon and wheeled around. In order to keep the peace while out and public and avoid a meltdown, we just give in. We fully realize that others might look at Monkey and think she is too big to be wheeled around, but it is a small adjustment we make to try and make some family memories.

There are lots of events that happen at this time of year: Thanksgiving, Halloween, Monkey’s birthday, and Christmas all fall in the next 3 months and I start thinking about milestones and memories. Monkey can’t answer a question like “what do you want to be for Halloween?”, so we take a guess based on her interests in things like tv shows or books. She likes to pretend she is a pirate, so this year that is what it will be I think, but I don’t really know. I still try and make an effort to make sure she is involved in activities that typical kids her age would be – but it is hard to go through effort every time and have Monkey seem indifferent to it. I know if course, that this is just Autism, but it doesn’t make it any less painful or frustrating.

Monkey doesn’t really understand the concept of birthdays or presents yet. You could give her a pile of wrapped gifts, and she doesn’t really know what to do with them – she loves playing with toys of course – she just needs to be shown how they work. But, having her open presents and have a look of amazement of what Santa has brought on Christmas morning – she doesn’t have these reactions. We have tried reading books, watching cartoons, or even using our birthdays as examples of what to do – but she loses interest and moves on quickly.

Does that mean I won’t plan a 4th birthday party, or make a cake, or wrap gifts from Santa, or take her trick-or-treating? While that might be the easy way out making memories and celebrating milestones is incredibly important to me. I am holding out hope that maybe one day she will get it and be interested in these activities – but until then I know that I am making memories and spending time together because it’s fun. And for now, that is enough.

A Letter to Monkey’s Kindergarten Class (Part 2)

 

JK.pngHey Guys!!!

This time is so exciting for you! You are all reaching an amazing milestone – some of you are starting Junior Kindergarten!!! I see the excitement and nervousness on your faces. You guys get to play and learn new things! But, I know that you might be nervous because this school seems so big and you are surrounded with people you don’t know. I promise that you will make new friends and have fantastic teachers to help you along the way! I am so excited for you and all the things that you will learn and amazing things you will experience this year! Those of you that are older are starting Senior Kindergarten and are already experts in your class – it is exciting to start another school year and learn even more!

I want to introduce you to my Monkey. See that little girl over there who might be playing by herself? Or having lots of fun playing and running? That is my Monkey. You will notice she is always smiling and pretty happy. You might ask her name – and she might ignore you. It is not because she is mad at you, but rather because she is too busy playing and looking at things around her. You see Monkey has Autism Spectrum Disorder (Those are a lot of big words aren’t they?!?!), well let’s call is ASD. You see, my Monkey does some things that might be a little different for you. You will notice that she usually has to hold some small items in her hands (like beads) or has trouble sitting down during circle time or following instructions. You see, it is not that Monkey is being “bad” but rather that she is has trouble focusing on one thing. She usually needs to be doing a lot of things at once! You see, Monkey’s brain works a little differently than yours or mine. There are some things that come easily to you that she has some difficulty with – but at the same time, there are some things that she can do that are pretty amazing!

Monkey loves Peppa Pig and Peg + Cat (maybe you like those shows too!) – and sometimes she doesn’t know what to say when you ask her a question, so she might use lines from those shows or repeat what you have said. It might seem a little odd, but she is still learning how to communicate with people. Her absolute favourite thing in the world is being outside and running and jumping (I bet you love that too!). She loves being chased and running after others – so you guys can have lots of fun playing during recess.

Can I ask a small favour from all of you? It would be really awesome if you could keep talking to her and playing with her (even when it seems like she doesn’t want to play with you or ignore you). I know all of you are learning to be patient (waiting is hard work!!), but I would really appreciate if you could always be nice to Monkey and keep trying to talk to her. I know that your parents have taught you to be kind, and I know that you will do your hardest to be nice to everyone in your class. You see, Mon key is very special to me, and even though she might speak or act differently from your other friends, she also wants to feel included and wants to have fun and learn at school. I can’t be there with her, so I am asking all of you to do that for me if it isn’t too much trouble.

Thanks guys – I know you will all have an amazing year, and I can’t wait to see how all of you learn and grow.

Thank You,

Monkey’s Mommy

 

Diagnosiversary

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It has officially been 1 year since we received Monkey’s diagnosis. I remember this day like no other. I remember the doctor taking us through a long checklist of items and then explaining to us that Monkey exhibited many of the signs of Autism Spectrum Disorder. I know he said things after that…but I was in shock and did not really listen to anything else. In that moment everything changed while still remaining the same. Everything changed because in that moment the life I had imagined and planned was gone. At the same time, our Monkey was the same happy go lucky child she is. Looking back, I have to admit that this provided comfort.

After receiving the diagnosis, I poured myself into reading books, blogs, websites, Facebook groups and anything else to figure out what we were supposed to do. I am a planner and I needed a plan – I needed to “beat” this. In those early days if I am being honest, I looked at Autism as a problem that needed to be “fixed”. I know so much more now and I realize that Autism gives and takes like everything else in life. As much as I realize that our Monkey is more than autism, I also know that autism is what makes her who she is. She is autism and autism is her. There are good days, and bad days, highs and lows, triumphs and pitfalls, but throughout all of it I am learning so much every day. I am learning to see Monkey’s beautiful brain and her unique gifts.

There are also things that I would not wish on any other parent. The most painful part of autism for me is not being about to speak to my daughter. Not being able to hear all about the adventures and activities of her day, not being able to get an answer to simple questions like “what is your favourite colour” or “what was the most fun thing you did today”. Not being able to know what your child is thinking is torture. It is the thing that I hate most about autism. I would take every meltdown and sensory issue in stride if I could communicate with my child. I hope and pray every day that we get there.

At the same time, our little Monkey is working so hard. She is settling into school and a new routine fairly quickly in Kindergarten and the school staff have been amazing. They write us little notes about how her day was every day, and I cherish every word because it gives me a glimpse into what she can’t tell me. ABA therapy is going well, and she is conquering new programs and skills so quickly. Her therapists are amazing and even though we are going into debt to pay for it – it is completely worth it.

It has been one of the hardest years of our life as a family, but we came out the other side. I know that we have many more years of research, advocating and learning ahead of us but I know that if we can get through this first year we can get through anything. A year ago we were in shock and grief, but 365 days later we have hope – and that is the most powerful tool in our autism journey.

A Letter to My Daughter Before Starting Kindergarten (Part 1)

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My Dearest Monkey,

I put you to bed tonight and after our stories and songs, I laid in bed with you, snuggled you and breathed in the smell of your hair and hugged you close. You turned around to face me and gave me a big smile. I then watched as your eyes became heavier and heavier until you eventually closed them. I lied next to you and gazed at you wondering how your Daddy and I could have created something so beautiful. Sometimes I look at you and I am transported back to the times where it was just us – feeding you in your room at 3am while the rest of the world slept. As exhausting as that time was, those were the times where I could just watch you and take you in and relish in taking care of you while the world stopped.

I remember the day you were born like it was yesterday. After 19 hours, my labour was not progressing and we decided to do a c-section to get you out. I was terrified – and a cold sterile and bright lit room was not how I initially imagined my birth would go – but like everything else you do – you needed a spotlight. I think back now and I laugh because it was your way of announcing “Here I am!”. After you came out, they put your head next to mine and I kissed you and rubbed my cheeks against you. Your dad and the midwife took you to recovery and by the time I had joined you both – your dad was cleaning off his chest because you had decided to poop on him during skin to skin. I finally got to hold you and if I am being honest I thought something was wrong with me, because I didn’t feel that wave of emotion and love….I was just terrified. In the first couple of weeks after bringing you home, I was so caught up in feedings and weight gain and diaper changes and getting my milk supply up, that I didn’t appreciate the beautiful baby I had grown and brought into this world. One day, I looked at you as I was feeding you at 3am and looked at your little lips and your hands and your perfect button nose…and I fell in love. Head over heels. It took me a couple of weeks, but from that day on I just stared at you every chance I got- because you were perfection.

As you grew up, my days were filled with thinking about all the fun things we could do together as a family that would put a smile on your face. You have the best smile in the world. I challenge anyone to look at you smile and not smile themselves…it is impossible. You are the happiest little girl I have ever seen – and when I lay my eyes on your million dollar smile, my heart is full.

Next week, you start Junior Kindergarten. I don’t know how time went this fast. This is a milestone that I knew was coming but can’t believe is already here. Somehow, this is hitting me harder than when you started daycare because I think starting school really is the start of you being more independent and needing your Daddy and I a little less every day.

My darling girl – you can do anything. You have worked so hard in the last 6 months and come so far. I know there will be times that you will get frustrated and want to give up, but your willingness to keep trying and practice amazes me. I have seen glimpses of how your mind works – like memorizing lines from books or tv shows you haven’t read or seen in months. Your mind is as beautiful and unique as you are – please don’t be afraid to show it. You might think differently than others in your class – but you are important and you are not any less because of it. If anything – it makes you extra special. You love learning new things – and even if it takes you a few more tries than the others – it means you really want to get it right. I know making friends might be difficult for you – but you will meet one or a few that understand you and love running and playing just as much as you do. Don’t be anyone other than you – because you are amazing.

Your Daddy and I are so proud of you. You are strong. You are resilient. You are unique and special. You are perfect.

As you go  into this new place – we will be here for you, supporting you and cheering for you every step of the way. So go and discover, learn, and grow because you my darling girl are about to set the world on fire. You have already taught me so much more than i have taught you, and I know that you will continue to do this with everyone you meet. Just flash that million dollar smile – nobody can resist it.

Love Always,

Mommy

XOXOXO

The Pressure to Keep it Together

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It’s been a while. I had my major research project for my MBA to do which took over most of my spare time, and now that it is submitted (cue joyous shrieks!!) I can come back to blogging again. We have been all doing well – Monkey has been making huge strides at therapy and is safe to say that she is officially potty trained! We of course expect some accidents here or there – but this major goal for the summer has been accomplished!!! She still needs assistance in the bathroom in terms of wiping, etc, but she will get there eventually.

Monkey has been spending a lot more time focused at the table for tasks, which is great. She can now count to 40 and is beginning to use a few new phrases and some new spontaneous language which is great. Her echolalia is still pretty strong, but she is making progress so we are pretty excited about that. J and I are also currently taking a More Than Words workshop offered through our regional provider and we have learned some new tactics to engage with Monkey and have more meaningful interactions with her.

Things are on track for school – we are supposed to have a follow up meeting with her school the last week of August to give them an update on her new skills and what they can expect. I am also hoping she can visit the classroom and meet her teacher. I am quite nervous about school actually – this will be a whole new environment with all new people for her, and I am worried about her transition. Monkey needs routine (as many kids on the spectrum do), and a whole new environment coupled with new people, and a brand new schedule might be a little more for her to handle. She will be going to JK four days a week, and her therapy centre two days a week (one day during the week and one day on the weekend). It is important for her to continue with therapy because she really has made some amazing strides this summer by having longer days there.

Her school made Monkey a social story, which I just got laminated and bound and goes over the school, her teacher and staff, the bathroom, and what she can expect. We plan on reading it to her often in the hopes that she can connect the story with her space in September. All in all – we are doing all that we can – and then some. But, it can all be so overwhelming. I constantly battle with what else could I be doing – is it enough? I feel immense guilt for being in school part time right now as I feel that my focus isn’t completely on Monkey. I know that every parent feels this way though at some point – and I have to trust that J and I are doing he best that we can.

We often get asked how Monkey is doing from family and friends and we are happy to brag about all of the things that she is doing now and how she has come so far. I met up with a dear friend a few weeks ago, and we went through this conversation and she asked “How are you doing?” I assumed this was the superficial – what’s going on type of question, so I responded that we are keeping busy. She stopped me and said “No, I mean how are you handling all of this? Are you getting all the support that you need?”. To be honest, I stopped, and I broke down in front of her – because that is the first time since Monkey’s diagnosis that anyone has asked me that.

When you have a child with special needs you feel like you are always fighting. You feel that if you let your guard down, you are being selfish – you are not doing enough. This is the pressure to always keep it together – but it is ok not to sometimes. It is ok to scream and be frustrated about wait lists that aren’t budging, if your child has a rough day, or if your debt levels rise in order to pay for therapy – because you are human. There are so many people who have said to me “I don’t know how you do it – you’re amazing”.  I do it because I have to, and any other parent would do the same if they were in that situation. I think all special needs parents (hell all parents – especially mothers) become their child’s diagnosis. Of course, it has a huge affect on their lives, but people forget about the person behind it all. The fact that someone asked me how I was – made me think about how I haven’t asked myself that question in a long time.

So, my only advice to those of you who might have someone in your life with a special needs family member – ask about them. Ask how they are – don’t ask what you can do, but just be there – and listen. This journey can be quite lonely at times because there are others who don’t understand your experience. Sometimes listening and validating that it is ok to not have everything together all the time is human. Remind that person that they still exist beyond their child.

Next week J and I have taken some vacation time – and we don’t really have any plans. We just want to be together as a family and not worry about shuttling to therapy appointments, or work and just see where the days take us. (I am sure that we will hit up every splash pad/pool in the area). We are going to slow down and soak in every minute with our little Monkey and not worry about anything – just be.