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.

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Just Keep Swimming

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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.

Toileting

 

potty-training-basics-2160x1200.jpgMan oh man – I feel like I could write a novel on this subject. We have been struggling with getting Monkey potty-trained for well over a year. Last summer, J and I took a week off from work and decided to do potty training bootcamp (aka the three day method). We had a bit of success, but it was not at all consistent, and after huge amounts of accidents, J and I got frustrated and gave up. Because Monkey’s communication level at that time wasn’t really there, she didn’t know how to communicate that she had to go. We were using potty chairs at the time, and sometimes she made it on her own, but it was a crapshoot. There were days she would make it at daycare, and other days when it was accident after accident.

J and I should have stayed the course, but it was too stressful on everyone, so we decided to put it on hold. I know we should have started earlier, but one of our goals for the summer was to make sure Monkey was potty trained in time for school this September. Our ABA therapists had us take some data to figure out how often she was going, and a plan was built around that. I know that toileting a child on the spectrum can be challenging – and I am not an expert on the subject, but this is what worked well for us, and I wanted to share so I could help others.

Monkey’s first full day was at her therapy centre and she was put on the toilet every 10 minutes. We had a special “bag of fun” made up which was only used in the bathroom and contained some highly motivating items for her. These included: bubbles, blue balls (she LOVES balls and anything dark blue), favourite books, a soundboard which made noise, her toy cellphone, and gave a list of some favourite YouTube videos like baby shark.

She was put on every 10 minutes, which we were nervous about because we didn’t want her to associate the bathroom with things she didn’t want to do (which is why the highly motivating items were included). She would get the most highly motivating item (an m&m) when she used the potty successfully. The was only put in pants and underwear, and pull-ups were only used for naps or night time sleep. The first day she had 4 accidents (but started realizing that she was wet). The second day at daycare we were nervous about ,but she only had two accidents. Gradually we began to increase the time interval and still rewarding with the m&m and giving lots of praise when she used the potty.

After 4 days, she initiated a couple of times, and managed to hold it and make it to the bathroom in time. After a week, the accidents had stopped and she was using the toilet regularly (not initiating all the time, but could go about 45 minutes when holding it). It has now been 2 weeks…and (knock on wood)…she is potty trained. She has initiated a little more often, but we are still working on that part. We had a long drive in the car yesterday (about an hour each way), and there were no problems. She has even woken up in the morning with her diaper dry a few times – after a 11-12 hour stretch of sleep!

Clearly, she was ready for this, and it was hardly painful (unlike the last time). Last summer, we did not have Monkey’s diagnosis and that is likely why we were pushing potty training. I have learned now more than ever to trust my gut to figure out when she is ready for things. It is natural to compare your child to other children their age for milestones, but this is also dangerous. She will have her own timeline for doing things, and it doesn’t make them any less amazing when she does. She has come so far in a few months and her communication skills are improving every day.

J and I will be attending a “More Than Words” workshop, geared towards getting children on the spectrum to have more functional communication. We will be working with other parents and a speech language pathologist to have some training workshops, and some sessions with Monkey to apply the skills we have learned. We are hoping to learn new tactics and skills so we can communicate with Monkey a little more.

We are so so proud of this major skill though! This is huge, and I am happy that come September she should have mastery of it. One major check off the list!!! Now to wean her off the m&ms…..

What I Can’t Stop Thinking About

This is an incredibly personal post for me, and I have thought for a while about whether I should even include it on here, but since this in a place to help me work out my thoughts and feelings in a somewhat anonymous environment, except for the 3-4 regular readers I have (Hi Mom!), here goes nothing.

I think that many woman of a certain age (but not all)  have a time where they look around and see nothing but babies and pregnant women. I never really noticed it before until J and I reached a point in our relationship and marriage where we wanted to start a family. All of a sudden I felt I was surrounded by pregnant women or babies in strollers all the time. All I could think about were babies and a pregnancy. It didn’t take very long for us to become pregnant, and before I knew it I was growing a little life inside of me and we were excited/terrified/looking forward to the future of our little family. Until the very end, I had a picture perfect pregnancy. Very little nausea, minimal aches and pains, and other than being a bit uncomfortable by the end, it was a great experience. I had to be induced due to a medical complication (cholestasis), but the induction didn’t go as planned and I ended up having a C-section after 19 hours of labour.

She was finally here – 8 lbs of hopes, dreams, and love. After we got out of the newborn fog, seeing all of the new things she was learning every day and interacting with her kept my heart full. Seeing the man I love become a father made me fall in love with him all over again in a way I didn’t know was possible. Life was perfect. If I am being completely honest with myself,  I was starting to feel concerned about Monkey not reaching milestones from about 14-16 months onward. She did not walk until she was 17 months old, her babbling had decreased a bit, and she started to repeat a lot of phrases from 18 months onward. She wasn’t formally diagnosed until she was 3, because she met all of the checkpoints on the developmental checklists with our doctor. Our doctor told us, she is just a late bloomer…she will get there. I wish I had gotten her assessed earlier, but I can’t live in the past and need to be here in the present moment as much as possible.

Here is the thing: I see myself surrounded by babies and pregnant women again. I think about having another child all the time. I know that there are certain things (like my masters degree) that have to be finished before I even entertain the idea (I know my limits), but now the decision is so much more complicated. Once you have one child with Autism, the chances of having another child with Autism are 20%. 1 in 5. That is a very real possibility that we need to contend with. Not only that, but there is a possibility that our next child could be on the severe end of the spectrum. I don’t know if J and I could handle the assessments, the wait lists. the IEP meetings, the ABA and the financial implications all over again. I don’t know if I have enough fight to start from the beginning while still fighting for everything that Monkey needs. J has expressed this fear to me and being the worrier that he is, I can understand where he is coming from.

Our basement storage area is exploding at the seams because I won’t throw any baby items away. Clothing, bottles, bibs, a stroller…all things that Monkey doesn’t use anymore, but things that I can’t bring myself to sell or donate for the possibility that we might need them again one day. I know that if Monkey was neurotypical, we would be having another child. Autism has robbed out family of so many things…and it may rob us of having a second child as well. If we choose to go ahead with it, does that make us selfish? If our child does end up being neurotypical, how will his/her upbringing be impacted with an older sister on the spectrum? Once J and I pass on, is it fair to them if they end up becoming her caregiver? Then of course, there is the thing that we don’t want to think about…what if our next child is on the more severe end of the spectrum and will need full time care for the rest of their life? There are so many things to consider.

Trying to use logic with a matter of the heart is so difficult. I always thought that I would have two children – having a close sibling relationship is something that I was so happy I had growing up – are we taking that experience away from Monkey? There are so many questions and things to consider, and we don’t have the answers or a decision yet. This is yet another way that Autism impacts families and a reality that we need to live with every day. For now, I will finish my degree and we will wait, but I am not getting any younger. For now we need to concentrate on getting Monkey ready for Junior Kindergarten in September – a stage that I have a LOT of other worries about, but that is another post. Right now, I am using this Disney song lyric to push me through:

“No Matter how your heart is grieving, if you keep on believing, the dreams that you wish will come true”.

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.