Different, not less.

As I sit here writing this, Monkey is doing water play in the kitchen. I filled a big red bucket with water and put objects of different shapes and sizes and textures in it, then let him have at it. He loves it, and it saves my toilet from over flushing. An added bonus is that I will have nice clean kitchen floors after mopping up the water that he spills. This week we have spent time researching locks and child proofing devices that will prevent Monkey from leaving our apartment and from flushing the toilet and running the taps in the bathroom. I do think we’ll have to leave instructions for any adult who comes into our home, but at least our bathroom and front door are autism proof. Or Monkey proof, anyway.

I’ve mentioned on facebook that April is Autism Acceptance month. Various autism communities have different means of expressing this. Some call it autism awareness, but awareness is just the first step that leads to the ultimate goal of acceptance. Awareness is tolerance and education and understanding. Acceptance is compassion and patience and love. I don’t want to send my kid out into a world that merely tolerates his differences; I want to send him into a world that celebrates everything that makes him who he is. Autism, in this house, is not a disease or a condition that needs to be cured. It is a part of what makes Monkey very uniquely HIM. It is as part of him as his multicoloured eyes, and sandy brown hair. We don’t love him despite autism, we love him exactly as he is.

imageIt isn’t just that this month we go all “autism pride”. We live our lives like this every day. Every day we advocate for our son and tell the world to love and accept him when they stare and judge. Every day we are faced with recognizing the things that make Monkey different. Every day we watch him try to overcome the hurdles of typical communication and social skills. Every day we attempt to prepare him for a world that is not perfectly shaped for him. Every parent strives to make their child ready for the world, to teach their child how to be themselves and to be whoever they want to be. That is all we are doing as well, but also trying to teach the world to be open to new things, to accept that some people think and learn and behave differently from the rest of us.

So this month is when we autism parents shout out loud (or, louder than our usual). Now, it is time for me to put an end to the water play and take my children outside to spread a little acceptance.

30 Things I’ve Learned in 30 Years

Today is my 30th birthday. I’ve noticed that there are a few ways people react to turning 30. There are those who cringe, and who are apprehensive about entering this new decade. Then there are those who are apathetic, and claim that it’s just an ordinary day and no big deal. Lastly, there are the people who are happy to leave their 20′s behind, whether that is because they identify more with those in their 30′s or because they are ready to move on from the things that the last decade held for them. Personally, I’m happy to be 30 now. I’ve felt for a while that once I hit my 30′s I’ll be a legitimate adult and I will have it all together. That is totally not the case (and I’ve discovered that there will likely never be a time in which I feel like I have everything together). I’ve now been on this planet for three decades, and while I still know pretty much nothing about anything, I do think I’ve learned a few good things along the way. For fun, I thought I’d make a list of 30 things I’ve learned in the past 30 years. Of course, I realize these things only apply to me, but maybe others might be able to relate.

1. Being an adult is a lot more work than kids think it will be.
2. Extravagant vacations and fancy nights out are fun and exciting, but it’s also okay to prefer quiet nights at home with Netflix and pizza.
3. Everything has a way of working itself out in ways we don’t expect.
4. Remembering your roots is the best way to find yourself when you feel lost.
5. No matter how far apart you are, you always feel better when you hear your mom’s voice.
6. It doesn’t matter how old you get, you always need your mommy.
7. When you find a group of friends who accept you for who you really are, who support you through your most difficult times, and who make you want to be a better person, hang on to them. Good friends are hard to find.
8. Loving what you love because YOU love it, and not because it is “cool” or “trendy” is one of the easiest ways to be true to yourself. It also helps to find friends who have the same crazy passions.
9. It is okay to be a geek. You can be girly and geeky at the same time. There are no geek rules.
10. If you aren’t loving a book you are reading or a show/movie you are watching, it’s okay to stop before finishing. Life is too short to spend leisure time doing things you don’t love.
11. Good skin care goes a long way.
12. Life is hard. You don’t have to be okay all the time.
13. Even with the most meticulously laid out plans, life still happens however it will happen. You can’t control it, and you can’t plan for it. It’s best to learn how to cope with the unpredictability and roll with it. (I’m still learning this one)
14. Taking care of yourself is really just as important as taking care of other people. After all, who will take care of them if something happens to you? And how will they learn to take care of themselves without your example of self-care?
15. You are important.
16. There is always something to be grateful for.
17. Kindness and consideration for others will go a long way.
18. Pay it forward, always. When you are blessed, go be a blessing.
19. You don’t know how strong you are until you are faced with something that requires you to be strong.
20. A long hot shower, some comfy clothes and a mug of tea can cure a myriad of ailments.
21. Sometimes the best therapy is hugging a cow (or a dog, or a cat, or a horse).
22. Comfort over fashion is a lot more sensible than those really cute but really painful boots you bought on a whim.
23. It’s okay if your favourite movie is a cartoon.
24. When you reach the point of needing to dye your hair to cover greys, it is not nearly as fun as dyeing your hair just for kicks is.
25. When going to the grocery store by yourself feels like a vacation, it’s probably time for a break.
26. You’re the adult now. If you want to make pancakes for dinner, you totally can.
27. You’re never too old to laugh at fart jokes.
28. Bladder incontinence is a real thing, and it happens even to the best of people.
29. You don’t have to like something just because other people do.
30. Teenagers are still scary even when you haven’t been one for 11 years.

The other “A” Word

imageI’ve been thinking a lot about the first time we heard the word “autism” in relation to Monkey. From the day we self-referred for a speech assessment, I had dreams that they would tell us our son was autistic. It was a manifestation of my anxieties. In sleep, my fears and worries would present themselves in dreams, while awake I tried to prove that my worries were unfounded. I think most parents go through this period of denial when dealing with a situation like this. You try to tell yourself that you’re just being silly, your kid is totally normal, and you’ll hear as much from professionals. For some, this denial lasts a long time (for many, it lasts until the diagnosis), for others, they know and accept the diagnosis before it is even given.

Shortly before Monkey’s first speech assessment, my good friend was visiting with her husband and daughters. She’d long been my sounding board, especially in regards to parenting. She knew my worries, and she knew my son. She encouraged us to get Monkey assessed, and always supported me, calmed my fears, reminded me that no matter what, Monkey was still the same sweet kid he’d always been. The day before the assessment, she told me not to be alarmed if they mention autism. And that was all she said about that. Afterward, she mentioned to me that she had suspected Monkey had autism (she has personal experience with ASD, it wasn’t just something she was throwing around).

At the assessment, all of Monkey’s quirks were on display, we filled out paperwork that highlighted the areas he was behind, we explained his repetitive behaviours, we watched as the speech-language pathologist tried to engage with Monkey and get him to speak to her. She pointed out red flags and said the word I’d dreaded to hear. She couldn’t tell us whether or not she thought Monkey had autism, but she recommended getting him on the wait list for developmental assessment and autism diagnosis. The choice was up to us, but she encouraged us to do it. We did.

From that point, autism consumed us. We read hundreds of articles of information on autism. Dozens of blog posts from parents who had gone through what we were going through. We read a dozen books. It was clear to us that our son had autism. We made a decision to accept the inevitable and not hide in denial until we got a diagnosis. Early intervention was important, so we did everything we could.  Now, a year has passed, and many people have worked with Monkey. All of them have said they highly suspect autism. We’ve made such great strides in Monkey’s development, and I think this is mainly because we chose not to hide our heads in the sand, but instead embraced the new “normal” for us.

But still, the “A” word has been hard to hear. It is still hard to say sometimes. When trying to get pregnant, I used to pray that God would give me a baby. I’d tell Him I didn’t care if the baby wasn’t perfect. I’d take anything He could give me. I’d love a baby with health issues, I’d love a baby with down syndrome, I’d love a baby who was deaf or blind. I’d be a great mom, God, just please give me a baby. Little did I know He would take me up on that offer, and give me a son who was deemed different, who was developmentally delayed, whose brain worked differently than mine. Maybe God knew I’d love Monkey no matter what. Maybe He knew that I would find the strength to be his mommy. Or maybe He knew I needed Monkey, and Monkey needed me for a mommy. Autism isn’t a blessing, but Monkey is. I wouldn’t trade him for anything.

Preserving Privacy

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I’ve taken a bit of a break from blogging, because I had been spending some time thinking about what it means to preserve my boys’ privacy. While they are young and don’t really care or have a say in what I post here, I recognize that they still deserve the respect of some privacy. The Internet is a wonderful thing, connecting us to people who live far away, and keeping ties in relationships despite physical distances. At the same time, though, it opens us up to over sharing, which I am definitely guilty of. It is one thing for me to share all the details of my own life, because that is a decision I have made for myself, but to share all the details of other people’s lives, without their permission is something else altogether.

So I’ve been thinking about how to maintain a bit of privacy for the boys, while still sharing our lives. Not much will change for you, the lovely reader of this blog, but I did have to change some things about how I present myself, and what I share here.

I am back, officially, now, and hope to fill this blog with more stories and encouraging words and I hope you come along!

Also: if you’d like to receive more updates from me, follow me on Twitter, and like my Facebook Page! There is a link to each in the sidebar, as well.

Cheers!

A few days before Christmas, I started feeling kind of sad. There are things i had imagined about this season, with kids, that just aren’t coming into reality. For the most part, I am okay with the adjustments we have to make to our lives in order to keep Monkey feeling safe and preventing meltdowns. Normal life is good, we’ve started figuring out what works and what doesn’t, and we do alright.

imageThis year was pretty good for us. Our expectations were set pretty decently, so no surprises and no disappointments came. We didn’t force Santa pictures, though Little Bear LOVED Santa. We didn’t force opening gifts, though little Bear loved that as well. We kept crowded parties and activities limited to those we felt were important, though the few we went to, little Bear loved as well. Monkey hated Santa, and struggled with feeling overwhelmed by gift opening, and melted down at the preschool Christmas party. christmas morning was very low key. Hubby and I decided that we would exchange our gifts on Christmas Eve so we could enjoy it, and then focus on the kids on Christmas morning. That was perfect. Christmas morning we let monkey go at his own pace. he opened two gifts, and then was uninterested. We ended up opening the rest of his gifts for him. He really enjoyed playing with his brother’a new toys.

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He did enjoy his “big” gift once I opened it and set it up for him. then we went to nana and Poppy’s house for the rest of the day. He does well there, but it was still a bit much for him. He did a lot of scripting and stimming, which he usually does when he is overwhelmed.

He spent a good portion of time opening and closing the closet door, which is a stimming behaviour for him. and he didn’t eat much (a bowl of raspberries and some jello), but it was enjoyable nonetheless.

The he part that is hard for me is that Bear loves all of it. He loves all the Christmas things, the chaos, the presents, the people. I want him to have the things he loves, but without Making Monkey sacrifice. The balance is so difficult and I worry that Bear will have to miss out on a lot because his brother has special needs. And yes, I mourn the life I had imagined. My reality is so different than if imagined. I love my kids, of course, that shouldn’t even be a question, but I had so many big plans.

 

 

 

Learning About My Monkey

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Most at days I still feel like I am walking in the dark, trying desperately to figure out my child’s sensory needs, or deciphering the meaning behind his echolalia, or understanding what he is trying to communicate when he is not using words. I try everything I can think of, I take up people’s suggestions and see what works for my own little kid. I have learned to listen to what isn’t being said, and to understand that what I know about my kid right now is only a small percentage of who he really is.

I read a lot of articles and blogs about autism. From professionals in the field who write about therapies and new studies to moms of kids with autism who share their own knowledge and experience. I’ve learned a lot this way, and also through our own trial and error and suggestions from the various therapies we go to.

Sometimes it feels strange to read something and think of my child in a clinical way. most of the time, though, I am just very grateful to have some insight into the way my kid thinks and the way his brain works. Developmentally we know he is not at the same level as his peers, and we’ve come to accept that. We understand that he is just not going to do things at the same rate as other kids his age. His interests are a bit young for his age, and his abilities are also slightly delayed. At three years old, this isn’t a big deal and it is hardly noticeable (and to be honest, it is kind of nice that he and his baby brother can play with the same toys and we don’t really have to worry about hiding small pieces or keeping the baby away from Monkey’s toys). it will probably become more noticeable as he gets older, though.

We’ve decided not to try and force interest in things that Monkey isn’t interested in. In the same manner, we have accepted that he is a bit different from who we imagined he would be, and while we could try and change him and teach him to fit some mold we’ve designed as neurotypical adults, we want him to just be who he is. We were blessed with a son who burst through our expectations and became this element in our lives that changed us and the way we think, the way we parent, the way we behave.

Recently I posted about my struggles with disciplining Monkey, and just a few days ago, I learned something about impulse control and how/when it develops in neurotypical kids versus how/when it develops in delayed kids. That changed my way of thinking, and I’ve been attempting to react accordingly. just another puzzle piece in the bigger picture of my kiddo.

we have been having a bit of a rough time the past week or so. It just feels so chaotic and confusing for us as parents. Monkey hasn’t been handling all these changes in his routine very well, since Christmas festivities have messed things up a bit. Today I read something about extreme dysregulation, which is basically an outward response to a problem with fesling out of control when things are not routine. it often exhibits itself in emotional outbursts, but can’t really be sorted out with traditional discipline. We’ve noticed the past few days, and even beyond that, Monkey has become more physically aggressive, more difficult to deal with in general. We’ve tried time outs to no avail. When I read this about dysregulation, it was like a lightbulb went off. Suddenly I had another piece of the puzzle that will help me get to know Monkey.

Disciplining a Special Needs Kid

One thing we have always struggled with is discipline. We read the book 1-2-3 Magic, and tried that method, but the whole idea of getting a warning when we started counting was lost in Monkey. it is very hard to know how to discipline a child who doesn’t understand reason, or who’s communication is delayed. We also have no idea what he’s actually capable of understanding. He knows the rules, and is, in general, a good kid. He has typical tantrums over stupid things, and has naughty behaviours like any other kid, but we still struggle with discipline.

how do we know that he understands us when we put him in time out? at this point, time out is mostly for us. We are humans, with human limits, when Monkey pushes us, we often need a few minutes to cool down. Monkey also needs a few minutes to decompress and reset. Time out works for all of us.

We never really know if we are doing the right thing or not. And we often talk about worrying about what happens when Bear is old enough to feel he is being treated differently. Obviously, even if they were both neurotypical, they would still be two different people who require different things from us as parents. But I never want Bear to feel like he is getting the short end of the stick because his brother has autism.

before having kids, we thought we knew a thing or two about discipline. We watched Super Nanny, after all. We knew about time out and naughty spots and reward charts and age appropriate chores. But this was never in our realm of knowledge. So we’re learning, and figuring it out as we go. we just want to be sure we aren’t pushing too hard or being too lenient. We want Monkey to know the rules and understand that his actions have consequences, but we never really know if we’re doing it right.

Cooties? What cooties?

Photo by Jacquie at JPhotographer

Photo by Jacquie at JPhotographer

Yesterday we had a play date here with my good friend, J and her two little ones. Her kids are the same ages as mine, so it is nice to just let the kids be kids and do kid things while we have weird, disjointed conversations. When we can converse between interjections from the kids, potty breaks, diaper changes, snack preparation, and refereeing toddler fights, we are grateful for adult conversation.

These play dates started about a year ago, when our wee ones were tiny. J has been with us while we’ve dealt with speech issues and discussed autism and all the things that go along with it. She’s heard all my fears and frustrations, and has gotten to know my kids really well. A year ago, Monkey would retreat frequently and struggled to play with J’s daughter, Avi. He didn’t interact a lot with her, despite her pleas to play cars with him, or go see the toys in his room. it has progressed slowly as the kids became more familiar with each other, and as we worked with Monkey on social interactions. Avi always wanted Ty to hug her, and to play with her, but she was good about not pushing him (not too hard, anyway, she is three, after all).

Yesterday was so amazing I had to hold back tears. Monkey has always had a hard time socially. He wants to play, but his communication issues have made it hard for him to join in. He usually watches other kids play or plays beside them. He’s been warming up to Avi for a while, and yesterday they played together really well. During lunch he gave her yogurt, and while playing, he told her to “sit” So they could play together. It was great! These are the things we work so hard to help Monkey do. Seeing him actually playing with someone his own age was so wonderful.

It gives me so much hope for the future, knowing that all our hard work is not for naught. and with friends like Avi (and J), Monkey will have friends who are willing to wait for him to be ready to play with them. There is something so sweet about the innocence of a three year old. No judgement, no preconceived ideas about “normal”, just a little girl who thinks her friend is great, and who loves him despite his objection to endless hugs, and despite his inability to communicate with her. That three year old little girl has given me more hope than she’ll ever realize, and I hope someday I can tell her thank you. She is one of Monkey’s first friends, and without even knowing it, she has helped him in so many ways.

Introducing: Mr. Fish

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Gift buying for a preschooler is tough, even when you have a typically developing child. Three is such an “in between” age, they’re too big for baby/toddler toys, yet too little for some of the bigger kid toys. It’s tougher still when your preschooler is developmentally delayed and has extremely limited interests. You don’t want to just buy stuff just for the sake of giving the kid a gift, but it is hard to come up with yet another vehicle themed toy that will thrill your little guy.

Monkey’s interests are pretty limited, though he does play with other things on occasion. His three favourite things in the world are cars, music, and animals. Which of these is top of the list changes week to week. We had already decided to get him cars and trains for Christmas, so we wanted something different for his birthday. After a trip to the Children’s Library where he, yet again, spent the majority of the time standing in front of the fish tank, making kissy noises at the fish, we decided to take a risk and get Monkey a fish for his birthday. We knew very well that it could have been a poor decision, but we felt it was a chance we should take.

Monkey loves animals more than any other kid I’ve met. It helps that he was born into a home with more animals than people (at the time of his birth, we had two greyhounds and two cats. Presently, we have one greyhound and one cat, though we often talk of expanding the menagerie). His first word was our dog’s name, Ozzy. He could name half a dozen different animals before he could say “mommy”. This is a kid who gets joy out of a visiting house fly. To say he is an animal lover is an understatement. We often talk about his future and take guesses at what we think he will be good at. Most of the time, we think he’d love to be a veterinarian. It makes sense, too. There is no guessing with animals. There are no expectations, no questions to answer, no judgement, and no facial expressions and body language to interpret. They just are what they are.

I’d had a betta fish years ago, who lived to be a few years old, and I felt it would be a safe first pet for Monkey. I was pretty excited about it as well, as I love betta fish, but I knew this was to be Monkey’s fish. I bought the tank, the stones, the plant, the heater, the food, and then, a few days before his birthday I bought the fish. I tried to keep it hidden in the bedroom, but he found it within half an hour of coming home from daycare. He gasped and said, “a fish!”. It was the best reaction. I kept telling him it was HIS fish, Monkey’s fish, and he understood. The next morning he brought out his pillows and blankets and laid on the floor in front of the fish tank and told his brother, “See it? See fish? It’s Monkey’s fish!” Sometimes he climbs up and just watches the fish swimming around. He helps feed his fish, and says, “feed fish?” When the fish eats his food, he says “nom nom nom”. He loves the bubble nest the fish has built.

It was a complete success. The best gift we could have given him. Something that makes him feel important and gives him a sense of responsibility is so valuable. And he just loves it. So there we have it. Fish doesn’t have a name, so we’ve taken to just calling him Fish or Mr. Fish. When Monkey can choose a name, we’ll let him, but even our cat is called Kitty (she does have a name, but Monkey calls her Kitty, so now we all do).

Christmas Traditions

imageI am really big on traditions. In fact, when I told my mom that one of the things that drew me to the Catholic Church was the deeply rooted Traditions, she said, “that doesn’t surprise me. You’ve always been very into traditions”. And it’s true. I don’t really remember presents I got on Christmas, or what anyone said and did, but I remember the traditions. I remember the apple cider while we decorated the Christmas tree. I remember the new pajamas on Christmas Eve, I remember driving down Thoroughbred to look at the lights (non-locals, that is a street in the area I grew up that had MASSIVE outdoor lights displays, all in one neighborhood. There would be lines of cars driving through to look at the Christmas lights). I remember family dinners and playing games as a family (I miss that so so much). As we got older, things were different, but there were still these things. They didn’t change.

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And now, as the one with young kids, I’m passing on these traditions to my own kids and starting new ones. We give the boys new pajamas on Christmas Eve (and are starting a new tradition where they also get a new Christmas movie and we make a night of it), we take the boys to see Santa, we have hot chocolate and watch the snow fall (or, we will when the snow falls… supposed to snow next week!), we decorate the tree after Monkey’s birthday, we bake cookies together and read Christmas books together. And today we celebrate the Feast day of Saint Nicholas. This morning the boys woke up to find oranges and (chocolate) coins in their shoes, and candy canes hanging on the tree. We talked about how Saint Nicholas was a real man who gave gifts to poor children to help them, and how we celebrate that generosity today when we give gifts to others.

And most of the time, after putting out effort to make Christmas mean something to my young kids, I feel sad. It doesn’t really feel like Monkey understands. I lay in bed wondering if he’s absorbed any of it. I know he loves his “tomorrow” (chocolate advent calendar which he thinks is called “tomorrow”, because whenever he points at it and whines, indicating he wants more, I say, “tomorrow”). I know he loves the lights and the cookies, but does he know it’s special? Is it special to him? I don’t know. And it hurts my heart a little bit. I wonder if he’ll understand next year, the joy and anticipation of Christmas. Will he grasp The love and the giving and the happiness of the season next year? I don’t know. I hope so.

I read this blog post by A Diary of a Mom, where she talks about her daughter Brooke (who has autism) finally showing that she gets this whole Christmas thing. And I thought, there is hope. This isn’t all for nothing, because even if he doesn’t let on that he’s grasping this stuff and tucking it away in his mind, maybe he is. So I carry on with my silly traditions. And I hope that one day I can learn what they mean to him, and share them with both my kids. And maybe my silly little brain will just have to expand to a new idea, something better and something real for us. Sometimes traditions are made new to adapt to new people. And that’s okay.