Summer vacation

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In my opinion “summer vacation” is a four letter word. A word you spit out anger and frustration. Anyone who knows anything about Autism knows
that autistic children need routine and predictability in their days. If you’re lucky they do get that from September to June in school. And then comes July and August. Two months every year that turn your child’s structured world into upheaval. They get bored and frustrated and aren’t quite sure what to do with themselves. I know for my son he is used to having lots of things to do. Field trips,music,PE and so on. Now he’s stuck hanging out with mom every day. Not quite as much fun as hanging out with a class full of kids I’m sure!
Thankfully there’s day camp a couple times a week. A chance for him to hang out with his peers in a safe environment and get away from frustrated mommy. Parker is atypical in that he loves to be around people. He’s happiest when we have people over that he can socialize with. It’s really great. So much better than the days of isolating himself all day. But I don’t have enough friends to come over and hang out every day! So I’m so grateful for day camp and for knowing Parker is having some fun!
We have some family camping trips on the horizon and as much as I dislike camping I love that Parker and my other children have so much fun. For them I can sacrifice not sleeping in my comfy bed for a few nights.

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Cross roads

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My husband recently started working out of province. Effectively I’ve become a single parent for half of every month. It’s a change we are slowly starting to get used to. My typical kids have adapted quite well to it. But I think the hardest part has been parenting my son with autism on my own. It’s hard. Really hard. Especially when he is having a really bad day, like he has been the last few days.
Summer break is always a challenge. Parker does well with a scheduled,routine,busy day. He enjoys going to school. He gets bored when he is home. So boredom=acting out. Acting out= hurting mommy. It’s hard to keep your temper in check when your son is throwing things around the house and hitting you, knocking your glasses off your face and trying to bite you.
So here we are at the crossroads. Do we stay living in BC with the meager funding for intervention we get. Or do we make the move to Alberta. To the promise of better funding and more services for Parker. But by doing so, leaving all our friends and family behind. It’s a tough choice. But one we have to make. I need more resources to help me learn how to deal with Parker’s unwanted behaviors. I need to not get out of bed every morning dreading spending the day with my son, because nothing I do seems to make him happy.
I need to have hope for my future and for Parker’s future and I hope my family and friends can support whatever decision we make, and come visit often!

All great changes are preceded by chaos~ Deepak Chopra

Yesterdays

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This quote was a good reminder for me today. After having such a down day yesterday, it was good to remind myself to not let my bad yesterday make for a bad today.

If I constantly look behind myself at all the mistakes I made the day before, I would probably spend most of my todays feeling guilty and missing out on all the wonderful things happening around me. Like Parker waking up happy this morning. Or missing his cuddles and watching in pride as his big brother helped without complaint to get him ready for school. I would have missed out on the cuddle time before bed, where we looked at pictures on his iPad and he consistently chose only the pictures of me to look at ❤

If I had been wallowing in self pity about how bad yesterday was I would have missed some awesome stuff. As they say “Find joy in the little things, because sometimes we don’t realized that those little things are truly monumentous things.” And I for one am not willing to miss any of my monumentous moments in life.

Courage does not roar. Sometimes courage is the quiet voice at the end of the day saying “I will try again tomorrow”

It’s been one of those days.

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Today I’m angry. I’m angry at autism and what it has robbed me of. I’m angry, because my 8 year old still isn’t potty trained. I’m angry because he literally tore his room apart because he didn’t get his way. I’m angry because I have essentially been dealing with the terrible twos for nearly 7 years. And I’m angry because I’m just not dealing with it better.

I’m having one of those days, the ones where all you see is the negative things in your life. You can only see the obstacles in front of you, the things you are continually doing wrong. I should be old hat at this autism stuff by now. I should know exactly how to communicate with my son and avoid having him melt down over things.  On days like this ( my pity party days) I look to the future and think, how in the hell am I going to make it? How am I going to keep raising this child day after day after day, when it never feels like it’s getting any easier? What am I doing wrong?!

I know as women, we rarely say to each other how we honestly feel. We never say “Man, I wish I could just run away” or ” Being a mom really sucks ass” I think we are afraid of being judged by other moms or maybe someone will think we are mistreating our kids. I’m not sure why we hold it all in, pretending everything is just fine. I think as mothers we put way too much pressure on ourselves to be everything to everyone all of the time. We are only one person, and there are only 24 hours in a day. We don’t have super powers and we can’t run on will power alone.

Maybe it sounds selfish and needy, but sometimes I just want someone to say ” Hey you need a break, let me take over here for a while” I must admit to being bitter when I hear about my sister in law’s getting a break from their little ones because my mother in law has picked up their kids for the day. Nobody (except my folks) picks up Parker to give me a break.  I’m not sure if they are afraid of him? Or think he’s too much work ( he’s no more work than a typical 3 year old would be, he’s just taller). I know he’s my child and it isn’t anyone elses responsibility to care for him, but really, if you are going to do it for one person would it not stand to reason you should make the effort for everyone? If my 69 year old dad can take my two sons camping for 3 days, is it really so much to ask for an afternoon off? My parents are not his only set of grandparents, he has two more sets!

My husband recently started working out of province. For two weeks of every month I am a single parent. And it’s not easy. Especially since he is a great father and husband who is very hands on and helps me out a lot. To not have that extra set of hands around is taking some getting used to. And I’m not sure I will ever get used to it, I know for sure I won’t ever like it. It’s a means to an end, a way for me to be home because getting child care for Parker is becoming an issue. I’m grateful that I have a husband who is willing to sacrifice like he is doing. I’m grateful there’s work out there that pays well enough to make this a viable option for us. But I’m also terrified about what is going to happen as Parker gets older. Am I going to be able to handle him all on my own when he’s taller and much stronger than me? Am I going to be able to handle being the sole parents half the time? Or am I going to screw everything up, not be able to balance everything, the needs of my other two children and my own needs? I’m terrified of giving up working full time because I know I’m going to need a break and generally right now my break is going in to work. What am I going to do when I don’t have that?

I really don’t know the answer. I have to keep putting one foot in front of the other, hoping that one day I will look around and see that it wasn’t as bad as I thought it was going to be.

 

*Choo-choo, the pity party train is leaving the station, fingers crossed it’s a looong time until it makes a stop around these parts again*

 

 

 

BFF

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Ask anyone you know what a best friend is and they will likely tell you the following;

1-my best friend is someone I can talk to about ANYTHING

2-a best friend is someone who understands how you are feeling without you having to say one single word

3-my best friend is there for me no matter what.

4-my best friend knows me better than I know myself

5-my best friend will hold me while I cry

The list could go on forever, our best friends are our “Best” Friend for a reason. They are the relationship we value above all others, the one with the most history and memories attached, and the one you just could never replace. My best friend does all of the above things for me. I can cry and scream and rant, and my best friend never leaves my side. I can forget to do something I promised I would do, and I’m forgiven. When I need to sit quietly and just think things over in my head, my best friend is there incase I need to talk it over. I’m so lucky to have such an amazing best friend in my corner, I’m also lucky that I can call this best friend my husband.

When we met, we were just 18 and 19 years old. The connection was pretty instant, right from our first date to becoming engaged 10 months later. Alot of people said we wouldn’t last. We knew soon after we got married that we wanted to have children, and a month after our 2nd anniversary we welcomed our first child. I recently spoke to a good friend of mine about how your relationship with your partner changes the instant you have a baby. You not only love them because they are your partner, you love them because every time you look at the baby you created together, you see tangible proof of the love you share. You love them because they are there beside you, helping you navigate this new experience, with no complaints.

The two of us have both changed alot in the 16 years we’ve been together. We’ve become stronger people, we’ve gone to school, dealt with job losses and job changes, financial woes and of course parenting a child with special needs. But when I look back on all the challenges we’ve faced in our past I see that we have always faced them together. Holding eachother up when we need, and comforting eachother when necessary. Each of us knowing just what the other needs without having to ask. Because we are best friends. We talk about our feelings and our fears, we are always honest with eachother. I know I could not be the parent to Parker that I am without my husband by my side. I could not make it through some of the tougher days without his shoulder to cry on. I can’t imagine a future that doesn’t have him in it.

My husband is an amazing dad. He puts in the extra effort that alot of other men don’t seem to. Even when he is tired and just wants to relax, he is the one who will get us all motivated to go out and spend a fun family day together. Some of our best memories are on days when I just wanted to loaf on the couch at home, but he pushed us out the door and got us to all have fun together. Would it be easier for him to just say “fine I guess if you don’t feel like going we’ll stay home”? Yeah probably. But he loves us all enough to know what’s best for us sometimes, even when we don’t see it.

I know there are going to be alot more challenges in the future for us. Our kids are growing up and Parker is getting bigger and stronger every day. There are new hurdles to jump, sometimes daily. Something new for us as parents to learn, and as Parker’s teachers to learn. I know alot of it isn’t going to be easy. I know I’m probably gonna cry and yell and get angry. I’m going to make mistakes. But I also know that my best friend is going to be there right beside me, knowing exactly what I need, letting me talk about anything that is on my mind, and holding my hand the whole time. It doesn’t get any better than that.


The amazing Dr. Seuss

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When I had my older two children, I’d read to them every night before bed. Usually it was The Berenstein bears. I knew all the goings on of Mama, Papa, Brother and Sister bear. It was such great way to relax and wind down with the kids and finish the day off on a positive note and a great way to spend some one on one time together.

Fast forward a few years and I’m now parenting a little boy with Autism. For alot of years he didn’t like to cuddle or be in the room with other people. He wouldn’t make eye contact and because he couldn’t communicate he would scream. ALOT. He also would not sit with me and let me read to him at bedtime. I admit I felt a little ripped off. Here was my last baby, and I didn’t get to finish my day with him the way I did with his brother and sister. I knew it was because he just couldn’t physically sit still for that long, but it was still a little sad.

Now fast forward to 2 days ago. To me reading him the same book 5 times in a row. And to him sitting beside me on the couch listening each and every time I read it. And then not only sitting there, but signing “More book please mommy” after each reading! To say we’ve made progress may just be an understatement. To say it took us a while to get here would be another one. But I think the moment was just a little more special having waited so long to enjoy it. I often feel like a new parent, telling my friends about the amazing things my child has done!

It’s so exciting to see him growing in the way he is lately. To see him becoming a sneaking boy who hides things he wants, or use the communication tools he’s learned to express his needs. I definitely need to learn to not underestimate him. He surprises me daily. Now when I say “ABCD EFG HIJK LMNO” Parker says “P!!” Thank you Dr. Seuss!!!

Autism-A four letter word.

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I didn’t intend for my blog to be about Autism. I thought I might have alot of pithy things to say about an amazing array of things. I was wrong. Autism shapes every single one of my days. Our having to deal with Autism and its consequences has shaped me into the person I have become today. So it only makes sense that I just might have alot to say on the subject and other subjects too. I may whine, I may bitch, but I will always be open and honest about my triumphs, my sorrows and my hopes and dreams when it comes to parenting my special, amazing, wonderful, frustrating, energetic son.

I have ALOT to learn about autism still. Even 5 1/2  years after my son’s diagnosis. Just when I think I have it all figured out, something changes, and I’m back at square one. I admit that I get frustrated alot. I’m a perfectly flawed human being who also happens to be a mom. I’m gonna screw up, I’m gonna yell once too often and I’m always going to love my children at the end of the day (and hopefully make it there in one piece)

While I know that inspiring hopeful stories are always in the news, those aren’t real life. It isn’t all butterflies and fluffy clouds and amazing medical breakthroughs. Some days, it’s crap on the bottom of your shoe and dark clouds rolling over head and the same stimming behaviours day after day . You can’t happy thought some stuff away. You can’t smile and say ” Well tomorrow is another day” because right now, this sucks and I want to run away from home!!!

I will admit to feeling sorry for myself some days. On days when people who I expect to understand what I’m going through let me down. On days when I just want someone to say,”You’re right this does suck”, but no one is around to listen. I will admit to being selfish sometimes. Some days, I just want to think about me, I think most moms have days like that. (Dads too) But I firmly believe all of those feelings are healthy and need to be expressed. Holding in your fears, worries, and disappointments isn’t healthy.

Tonight I found something I had written a couple years ago~

“Tonight I watched a movie, I finished it feeling inspired, happy, hopeful. This great well of “god i need to do something like this” took me over. What can I do that could compare to what this man did for his autistic son? What can I do to make a significant difference in my son’s quality of life? The questions are many, the answers?? Too few.
I’m not a stupid person, I know this. But when it comes to figuring out or knowing how best to help my son on a day to day basis, in order to help him achieve his max potential. I feel stupid, dumb, completely senseless. There is no guide book, no website you can turn to that lists step by step the ways in which to reach your autistic child. What works for one parent will send another parent’s child spiralling out of control. But here I sit. Yearning for a direction. Wanting to do more than I know I have done and should have done in the past 3 years since my son’s diagnosis.
Why haven’t I done more up until this point? Was it in hopes that the people we hired would perform the miracle I was hoping for? Was it laziness? Using my excuses of work, homelife and the craziness of having three kids be my out for not doing something? Was it fear? Scared to take the risk and do something and have it fail? Yes, I believe it was all of these things and many many more.”

When I read what I wrote more than 2 years ago, I think I sound defeated and while to a certain degree I still feel some of those feelings,those weren’t feelings I ever felt I could share with anyone, hence them remaining unread by anyone for so long. I don’t think there’s shame in saying that you can’t handle it, or crying because sometimes it’s all you can do. I think the shame is saying you have it all under control when you don’t. We are all too worried about other peoples perceptions of us. Worried about what people see when they look at us. Having a child with autism definitely teaches you humility and teaches you that if people are watching, not to give a rat’s ass what they think because you are doing the best you can. I don’t believe in miracle cures, but I do believe in working every day toward a full independent life for my son, what ever form that may take. I believe  that he’ll get there in spite of having me for his mom haha.

I also believe that one day I will stop being surprised by people’s lack of understanding. I’m not there yet, but I’m working on it.

(PS the movie I was referring to was  The Horse Boy http://www.horseboymovie.com/)