Managing Expectations

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Time is flying by – I always seem to say this, but when every week is being counted down and attributed to a new pregnancy related milestone – it seems that time moves even faster somehow. I am 29.5 weeks pregnant, and in the third trimester – which is crazy! Suddenly, I am freaking out with J and telling him about all the stuff we still have to do – and not a lot of time to do it in! We are not unique in this situation – it is so much more stressful preparing for a baby when you already have another child to worry about.

My belly pretty much announces itself wherever it goes now, and well-meaning people often say congratulations and then ask if it is my first. I say, no it’s my second, and then they ask how old our first child is. My standard response is “She will be 5 when the baby is born”. Right after this they often say “Oh that will be great! She will be able to help out and be a great big sister!”. Despite my last post, I will often just smile and nod and talk about something else. After all, going into all of the details for a short conversation sometimes seems like overkill. Then – I wonder what will happen – how Monkey will react when the baby arrives and she realizes that it’s a permanent situation. Monkey is very drawn to babies – every time she sees one she says “awww…..it’s a baby!” and is always curious to look and say “baby mommy!”. We have had a baby boom in our extended family recently and there have been no hints of jealousy from her with J or I holding another baby – just curiosity. I do wonder what will happen with the day-to-day however when we bring this new baby home and suddenly both of her mom’s and dad’s time will become stretched. I know this is a worry even for a neurotypical family – how I wish I could tell Monkey that I will always be there for her and that I will do my best – but it might not be enough. J and I have started with trying to explain to her that the baby will cry, and need feeding and diaper changes – but I don’t know much she understands.

I am thankful that she will still have her routine of school and therapy so that her world won’t be completely thrown upside down – but I am trying to manage everyone’s expectations. I am trying to prepare Monkey with the changes about to happen with our family. I am trying to manage my own expectations about her reaction to her new sibling. I am trying to manage expectations of myself when this new baby arrives. I am trying to figure out how the relationship between J and I will change and how to give ourselves to two children when there are some days we feel stretched in dealing with just one of them.

I don’t think that these fears and thoughts are unique to us – but they are worries just the same. I know like anything there will be good days and bad days and sleep deprivation and exhaustion. I am also trying to manage my expectations of the unknown – will this child be on the spectrum, or not? J and I found out this baby will be a boy (uncharted territory for us), and given that Autism is diagnosed more often in boys – a moment that should have been exciting and momentous had worry attached to it. We have made peace with that now, but I would be lying if I didn’t acknowledge out initial thoughts.

We are excited about this new little one and about completing our family. Our journey with Monkey teaches me every day that expectations of what things should/will be like are not a great way to spend your time. There are days along this journey that we stumble, and others that are filled with so much joy and happiness that we think will burst. We just need to enjoy the ride and look ahead – even if that means hairpin turns and steep drops come out of nowhere. After all, even when you know they are coming doesn’t make you any more prepared for them. Just breathe and take it one day at a time…

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Being Comfortable with Being Uncomfortable

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It was a big day around here today! Monkey started Senior Kindergarten and man was this year’s experience totally different than last year’s. She is at the same school, and luckily has the same teacher so she happily greeted her teacher and said “I go to school!” and waved bye and said “Bye Mommy!! Bye Daddy!” as she went inside. It was so wonderful to see. I can tell you that last year the exact opposite happened, so I was thoroughly relieved when things went so smoothly today.

It got me thinking to the growth that I myself have made over the last year and how I approach things so differently now. There was a time after Monkey’s diagnosis where I only let certain people in on what was going on (close family and friends, people who interact with her, daycare staff, etc.). It was a long time before I would mention to fellow moms on the playground or co-workers the fact that she had autism. If we were at the park or in the grocery store, occasionally other parents would ask “How old is she?” and after I told them would say things like “Oh that is such a fun age!” or “I bet she never stops talking”. My previous reaction would be to smile and nod, but now my standard response is something more like “actually she is on the autism spectrum so she is not developing like other kids her age, but she is learning every day, and loves (x,y,z) right now!”.

Usually after saying this, I can visibly see that the other person is uncomfortable. I have heard things like “I’m so sorry” or “Oh”…with usually no further attempt at communication with me. I get it – at the beginning it was uncomfortable for me to say the words out loud (especially to a complete stranger), but then I realized that I need to be comfortable with others being uncomfortable, and maybe instead of brushing off their comment, can use the opportunity to educate them, it might mean that they will have a different reaction next time. It has been almost 2 years since diagnosis and I am just starting to become comfortable with this. I am going to stop caring about others being uncomfortable because in the end I have to create a world where Monkey is accepted for who she is and will thrive.

I have also come to terms with the fact that when people have these knee jerk reactions, it doesn’t mean they are bad people – they are just ones not educated in this particular area. Instead of hiding, educating them is the best way I can think of to deal with the situation. Creating a dialogue is my goal – making their discomfort a short-lived thing.

Birthday Parties – The Double Edged Sword

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I could write for days about the subject of birthday parties. When we plan a party for Monkey’s birthday I don’t have to worry about a possible meltdown or her being overwhelmed because I plan everything to the last detail – the menu, location, number of people invited, etc. in order to make her have the most positive experience. J and I know her best and make a highly controlled event that we know she (and us) will enjoy. Other birthday parties have us saying a small prayer when we walk in and hope for the best.

It is nothing against other parents of course…J and I made a pact long ago that birthday parties were a two-parent event because we never know what to expect. We have had great experiences, where Monkey has enjoyed herself thoroughly, eaten pizza and cake, and come home happy, and we have had other experiences…like today’s.

I should mention that since Monkey started school this year, we haven’t had a single birthday invitation from her class – not one. I wasn’t terribly surprised, as I do not believe in inviting the whole class (that can be prohibitively expensive), but also as a child on the spectrum, Monkey doesn’t really know how to form a friendship with another child. She is learning social cues and expectations, and now will play with other children, but more often than not, she prefers to be by herself, or engage in parallel play with other kids. It is difficult – knowing that engaging with peers is difficult for your child, but also desperately wanting them to be included.

On the last day of school – we got a birthday invitation from another child that Monkey has shown a strong bond with. I opened the envelope and had tears of appreciation that another child in her class wanted Monkey at his party. I quickly RSVP’d that we would be there, probably spent more on a birthday gift than I should have and off we went. The party was a semi-structured martial arts birthday where the first half was instruction and following directions, and the second half was free play. J and I didn’t really know how it would go, but we decided to try anyway (we always have to try).

The first half went better than we thought it would. School has certainly helped her follow routine-based activities (like waiting in line, sitting cross legged on the floor with peers, etc.), but not all of the activities were followed in the same way as other children. J was there assisting her and guiding Monkey through movements and such – it all in all went as well as it could have. Then the kids were called for pizza and cake – no problem there – those are Monkey’s favourite foods after all. But, other kids got a little rowdy and the noise was a little too much to bear. Add in waiting in a long line to wash hands and not wanting to wait in line for the bouncy castle, along with not following the safety instructions – she ended up in full meltdown mode (think crying, screaming, kicking, the whole shebang). We made a quick exit and left the party 20 minutes before it was supposed to end.

The events that always impact me the most are birthday parties. It is one thing to live in our little bubble, knowing the great progress that Monkey has made since starting therapy and her diagnosis. It is another thing entirely when you find yourself in a situation with other typically developing children your child’s age and the differences become so clear to you. It is only natural to compare your child to another who is  similar age (or younger) when you are faced with it head on.

J and I were silent all the way home – and I fought back tears until I got into the house and they could flow freely. I was angry, upset, and honestly a little jealous. I was jealous of the other parents who could drop their child off for a party and pick them up later without worrying about behaviour issues. I am jealous of other parents who can speak and reason with their child knowing that it will actually go somewhere. I am jealous that other children seem to make bonds so easily…then after acknowledging these feelings, I cried more because I felt like an awful mother for feeling this way at all.

I want Monkey to be included and to participate in all of the things that other kids her age get the opportunity to – but I also know that it might not always turn out the way I want it to. I just hope this isn’t the last birthday invite we’ll get (friends and family aside or course). I am holding out hope that somewhere out there is another little girl or boy who can look beyond the surface of Monkey’s behaviours and see her for the little light that she is.

I hate autism today, but you had better believe that we will keep trying to take part in these experiences – I refuse to let autism rule our lives completely…on we go.

New Beginnings

Well – it seems keeping up with this blog has been somewhat of a challenge recently (I feel like I say that every time). Things have been going well with Monkey – her language is improving and she is using 5-6 word sentences on a more regular basis, she is also looking to share things with us a lot more. For example, she will say “Look Mommy, an airplane (or bus, truck, train, etc.). She is also answering yes/no questions and starting to understand “Wh” questions (what/where/who) about pictures or things we show her.

We are thoroughly enjoying our summer, which started off with a surprise trip to Great Wolf Lodge for a night, and lots of fun at pools, splash pads, and the science center. This is the first summer in 3 years that I am actually enjoying in the fullest because I graduated from my MBA in June. I honestly didn’t believe that it would happen – but I did and I am thoroughly enjoying spending time with family and friends.

As referenced in this post, J and I have been discussing a lot over the last year whether we want to have a second child. As I have mentioned, it is a difficult decision – while there is no definitive “test” for autism, in general, once you have a child who is on the spectrum, the chances of having another one on the spectrum can be anywhere from 20-25%. There are other unknowns too – if they end up being on the spectrum, they could be on the more severe end – it is a lot to consider. Not only that, but we don’t know how much support Monkey will need as she grows. She may end up being able to live on her own, or with some support, or she may need to live with us for her whole life – it is simply too early to know at this point.

It’s funny – but when you have a child with special needs, you think about the future constantly, not just in the way of wondering what job they will have, or if they might have a family of their own someday, but you think about your own mortality a lot. J and I have had conversations about what we will do when we are gone. We have family who adore Monkey of course, but deep inside of me I felt like I can’t bear to leave her alone. At the same time, is it fair to another child to have them end up being their sibling’s caretaker if they need to? It is not an easy decision.

However, you can’t use logic with a matter of the heart. After many many discussions, J and I decided that yes, we are ready to have a second child – no matter what happens. I am happy to say that we are expecting #2 in early January 2019. I still have all of the worries (even more so with Autism in our lives), but I place my hand in my belly and wonder all of the same things as any other parent would, but mostly “I can’t wait to meet you”. There is a good chance we might be dealing with a diagnosis all over again, but if there is one thing that I have learned, it is that you cannot let fear control your life.

I think that Monkey will enjoy having a sibling, though we are nervous about the changes that are going to occur for her because of it. She does love babies though, and gravitates towards them whenever we see them – it melts my heart. I am hoping that I won’t be so consumed with milestones and development with this little one that I miss out on the parenting experience in the early days – that would be tragic. But, realistically I know that I will be over-analyzing everything and just take it one day at a time. We can;t wait to have a tiny little babe again to hold and snuggle (even if it means much less sleep!) I will do my best and try to not miss it – and just take it one day at a time.

We don’t know if this little one will be on the spectrum or not – but I can guarantee they will be loved no matter what, and we are excited for this new chapter.

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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.

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

memory.jpg

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.