Lowering my Expectations

Cooper and his choo choosI am sitting here trying to decide what to write about.

I could write about the event I went to this weekend and how seeing hundreds of ‘normal’ happy children takes a lot out of me. How I had to text Jamie a few times for support and yet again realized how alone I am in my feelings about Cooper’s future. He will never feel how I feel about our situation. And I will never feel how he feels. Maybe its a man/woman thing. Or an outlook on life thing. I guess I don’t know. But I do know that it’s so dang lonely.

Or I could write about the whining that is getting worse every single day. Now granted we all sick so that doesn’t help but it’s almost too much to handle. Coops will see his Leap Pad hidden on top of the fridge or he will want a different cartoon on. Or I filled the wrong cup with milk or his train fell off the track. Whatever is may be. It could by anything. But, it’s loud and extremely wearing.

Or I could write about how when Cooper’s plays trains my heart nearly bursts with love. His joy is infectious.

After saying all that I decided I wanted to write about expectations and acceptance.

My sister has told me numerous times throughout my life that my expectations are too high when it comes to certain subjects. I need to lower them. And, she is definitely right about that. I think that is part of growing older and maturing. You need to learn to accept people for who they are and realize it is what it is.

At some point, I may (must) have to lower my expectations about Cooper’s future. I’ve watched hundreds of videos on YouTube and Facebook of kids with Apraxia. When I first started watching them my heart broke with every word. I will honestly say tears fell with almost every video. Most of the kiddos were struggling to make simple sounds. I could usually understand around half of what they were saying. They sounded odd. (Many kids with Apraxia sound like they have accents.) I would email them to Jamie and beg him to watch. And then I would wait for his reaction.

The videos all had one common theme. HAPPY parents and PROUD kids. The moms and dads would be beaming about the words. They would be almost giddy. The kids would be so excited that they were speaking and being understood. There was no sadness. So why was I crying?

I remember thinking, ‘oh my God. Is that Cooper’s future? Why are those parent’s so happy?’ I didn’t get it at the time. I was too new to this process. I still ‘expected‘ this to turn out fine. I thought at the time, ‘I’d rather he didn’t speak than sound special.’ If he sounds like that he will be teased and bullied. What kind of future would he have?  I stopped seeking out those videos for a long time. Almost a year I guess. How silly of me.

Now, I get it. Shame on me. Those mama’s prayed for words. Just like me they begged and bargained and hoped and prayed. They lost sleep at night with the worry. And just like me they ran themselves ragged with therapy and appointments.

So, when their kids started talking it didn’t matter what they sounded like. Because they were communicating. I get it now. Those kids had something to say and they were excited to say it. What I wouldn’t give for that moment and to be able to make a video of Cooper’s words.

Although Cooper hasn’t been diagnosed with Apraxia yet, I think I need to lower my expectations. And that is a tough pill to swallow.

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8 thoughts on “Lowering my Expectations

  1. Wow Kate! I too, have completely lowered my expectations. It really helps when you see another specialist that looks at you with the same puzzled expression that the previous specialist had. I think it is a coping mechanism as well. We have to do what will get us through. I am all for positive thinking but we have to survive to be strong for our boys.

  2. I completely agree with your decision. When my son was first diagnosed with autism, I cried, lamented, did the whole ‘woe is me bit’ and spent many a night laid in bed considering his possible future.

    Eventually, I learnt to let it all go. To drop ALL expectations. It was the best, most liberating decision I’ve ever made.

    Now I’m free. Free to love my son just the way he is-he’s amazing!! And free to celebrate every little achievement he makes.

    There’s no point in trying to live in the future-it hasn’t happened yet and none of us can predict the outcome.

    Much love 🙂 xx

  3. Been there, done that. I watched lots of speech videos on Youtube and apraxia blogs thinking, ‘is that what it’s going to be like?” But then, when I recorded his first speech video, I was sooo proud. And when I look back at that video I’m amazed by how excited we were just that he was making sounds, because now he’s saying words. And I’m sure in a year the video I took the other day will amaze me because he’ll be saying phrases. And so on.

    I’ve struggled so hard with comparing him to other children. It’s hard. I think it’s in a woman’s nature to compare ourselves, and our children to see where we measure up, if we’re succeeding or need to be doing more. I have to remind myself that I’m doing the best I can for my son and to focus on his heart, on his strengths, because that’s who he is. He’s not just a kid who can barely talk and struggles to climb things on the playground. He’s a lot more than that. And that’s who I want to see when I look at him. I want to focus on his progress and his strengths, not his delays and his weaknesses. But always a battle, especially at play dates when we’re around other children.

  4. Letting go of expectations can be really difficult. I remember when we finally had a start on diagnosis I was finally able to make new expectations. We made a list of ten goals with the objectives on how we would help our son meet the goals. We work on at least one aday. We actually started with getting dressed. His three year old sister already dressed herself, he struggled with the fine and gross motor skills. We worked on it for weeks and celebrated each step of the way. Make attainable goals for your son and find joy in each of his successes. It is tough letting go of old expectations, but do you know what. My son is happy where he is at and while he doesn’t have at on of friends the kids still love him because he is such a happy guy. Hang on there.

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