The Uphill Battle of Being a Caregiver

I cried on my way to work this morning. Not because I was sad.  I cried because being Cooper’s mom turns me into someone I don’t like. I feel trapped. And alone. And so utterly overwhelmed. And like I need to make threats to make his life easier. I don’t ever feel like I’m doing enough. Or the right thing. The special education system is a constant uphill fight with a 200 lb pack on your back and no food or water. Nothing comes easy. Not one part of it.…

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The Story Behind the Photos

Six months or so ago my dear friend Alicia put something into motion.. She saw a Facebook post by a photographer asking for people to nominate extraordinary special needs families. This amazing photographer, Kacie K Photography, understood firsthand how challenging and upsetting something like having your pictures taken can be for an autistic child. And for their parents and siblings. Unbeknownst to me, Alicia nominated our family. Here is her letter to Kacie K Photography: Kacie, First of all thank you for providing the opportunity for a family to have a photo shoot…

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What I am Missing….

I spend a lot of time thinking about all the things I’ve missed with Cooper. I know…he doesn’t know…he’s happy…he’s not missing out…blah, blah, blah. Those three things top my list of ‘What not to say to an Autism mom.’ But I know. I see it everyday in Sawyer. I know what I am missing. It’s a whole life. It’s language and emotion and socialization and laughter and interaction. I am missing it all. It comes in waves. Sawyer and I were looking through his baby book last night. We…

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For An Autistic Kiddo…

I often question how much I should push Cooper. And motivate him. And I really ask myself how much I should expect from him. If I completely lower my standards than I feel that I have given up on him. And his future. But I also can’t expect him to behave like a typical kid. Those skills are not there. I had Cooper’s yearly evaluation at Fraser last week. It went pretty well. He has really, really improved in the last year. I heard a lot of comments on how…

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We've Been Hiding Out

So where have we been?!?! Soaking up summer the good old fashioned way! Cooper is done with preschool for the summer and is only attending Fraser. Which is still five days a week. He is also getting speech 1x  per week and OT 1x per week. He handled the transition like a boss. As rigid as he can be that kid can go with the flow on so many other things. We found out that Cooper knows all of his letters and numbers up to 10. He also knows his…

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The Truth about Special Needs Parenting

There are no medals given out to special needs moms. It’s not like you do all this and at the end you get an award. There are very few breaks. Very few kudos. And in my world even fewer thank you’s. For some moms there are no hugs. Or kisses. But you do it. You keep fighting. It’s a mixture of hope and desperation. And not a day goes by when you don’t wonder…‘Am I doing the right things for my child?’ And here is the truth. I didn’t get a…

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An Honest Look at Playing with Cooper

I took this video of Cooper last night. We were ‘playing’ trains. I have so many memories of setting up this train track with Cooper and thanking God that he played with something. And telling therapists that he was fine because he played with toys. I was lying to myself. Lying to them. I set the train track up. I put all the trains together. If one thing is off he will destroy the track and throw every single piece. There is no putting things in the trains. No stopping…

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Trusting the Process

Cooper started Occupational Therapy last night. More therapy. More forms. More time. More time away from Sawyer. More everything. I want to be positive. I want to trust the process. I want to believe that it will work. But…. I kinda, sorta think I have the only kid that therapy won’t help. Less than a year ago we were doing speech 3 times a week and OT as well. We were doing social groups and ECFE and IEPs and parent groups. And it didn’t work. I think it actually did more…

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Coming out

Today is World Autism Day. Whoops. Dropped the ball on that one.  I didn’t even know there was such a thing. But I probably should know that…MOMMY FAIL. I am staring at Facebook right now and trying to decide if I want to post anything. If I do, then everyone knows that my son has autism. If I don’t, I feel like I am shaming it. Such an odd feeling. What if people look at it and feel bad for me. For our family. I don’t want that. But everyone should know…right? I’m not embarrassed.…

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We Are Moving Forward.

If you talk with a parent of a special needs child they will talk about their journey. And the diagnosis. For some people they are shocked when the diagnosis comes. For others, it happens more slowly. It evolves I guess. Whichever path you are on there will ALWAYS be parts that hurt. Look at me. I am doing better every day. I really am. But I still have very lows moments and days. Moments where I cry in private. Moments where I watch Cooper closer than I’ve ever watched Sawyer.…

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