We Take Nothing for Granted in our World

Last night, my five-year-old graduated from preschool. It was a super big deal in our world. He wore a cap and gown. He practiced a song for weeks in the car, the shower and before bed. His grandparents came to the ceremony. He stood in front with the other kids and got his diploma. Jamie and I sat and watched.

My baby boy. Achieving milestones. Growing up.

Now, we prepare for Kindergarten. We will set a day for school shopping. We will pick out his backpack and supplies. We will get his haircut. We will talk about the bus ride on the first day.

I have never in my life been more excited to do something with my child. And I won’t take one second of it for granted.

Sawyer, my rock. The one who keeps me deep rooted in reality. The one who has given me every conventional experience a mom is supposed to have. The one who is so easy. The one that everything just comes natural for.

He has no idea how special he is to me. He may never know that some days, some moments, I want to thank him just for being mine. For giving me a preschool graduation, school shopping and a first day of school photo.

Such simple experiences. Ones that are often taken for granted.

We never experienced any of this with Cooper. And while I’m not supposed to compare, or probably even admit my feelings, I always do. Because it’s real. And I know other moms and dads have felt it too.

The experiences missed seem to add up ever year.

It’s hard. It’s so hard that I want to scream sometimes. And it’s no ones fault. There is no blame. There is no anger.

It’s just admitting that missing out is hard. It’s as simple as that.

At age seven, our autistic son, Cooper attends a full-time, center based, autism program. It’s been a blessing. It’s been life changing.

But with that comes saying goodbye to the typical path. It means he isn’t in a grade. There are no school photos. No traditional school based milestones. There are no summers off. No first and last days of school.

There is no PTA. Or volunteering in his classroom. No field trips to chaperone. No programs to watch.

There is therapy that teaches him safety and how to use a speech device.

Our world with him is different.

He should be starting second grade. We should be preparing. Buying supplies. Learning who is teacher is.

I want the people outside of our world to know that not every child’s education path is the same. First days and last days of school aren’t always special. Some kids don’t have yearly school photos. There are no choir concerts or plays. No art projects home. No wondering what you are going to do with one more colored picture since your fridge is already full.

Cooper’s path through 3K, 4K and Kindergarten were not joyous. While he had some absolutely great teachers, some were not. That is a fact. In many ways, he fell through the cracks. Only we didn’t know it at the time.

I was a first time mom. I assumed every educator had Cooper’s best interest at heart.

I didn’t know what was supposed to be on an IEP. I didn’t know what his rights were. I wasn’t prepared to have to fight for basic things. For inclusion. I didn’t know the immense pressure I would feel.

When I look back, I remember the feeling of dread. Was I going to get a bad report that day? Would something terrible happen? Did his teacher’s like him?  Is he safe? Are they giving him a drink when he requests one? Is he scared?

Would I be called in for an emergency meeting? Would my kid be labeled the bad kid? Or the weird kid?

Would there be an event for all the other kindergarteners that my son would not be included in?

I never heard about his day. I never felt included. Special Education felt like the outsiders. I tried joining mom-groups at his school only to feel like an outsider. Nothing they spoke about ever pertained to my child.

I remember attending a school board meeting and watching a 5-minute compilation video and not seeing one child from the special education program.

I remember Cooper refusing to take a school photo and not being in the year book.

I remember attending and volunteering at the Christmas party, only to have to ask where my son was. And finding out there was no aide to take him around.

I remember learning that not all children are included. As much as we all say we believe in inclusion, and that it’s the goal, sometimes it doesn’t happen.

I don’t remember any special moments from kindergarten. I remember feeling robbed.

And while I agonized over ending it, pulling him and putting him in an autism focused program was right.

I’m writing this post for a few reasons. And one of them is NOT to be negative about special education or teachers. They are saints. But our program wasn’t good. And the holes we identified were a huge problem. One that I know we will encounter again and again throughout his life.

I am writing this because I am so thankful. Thankful for my son’s autism focused program. Thankful for options. I’m thankful for Sawyer and the huge deal we made about his preschool graduation. I’m thankful for all the amazing moments he has given our family.

I am writing this because I’ve learned that when you are not on the typical path you need to make your own milestones. Cooper may never take part in a choir concert or be ‘student of the month.’ But I can promise you that we will still celebrate him in his own way.

I’m already thinking about his graduation. Will he even have one? Or will it just be a transition from day treatment to being home every day? At this point I don’t know. But I can tell you I will be throwing a damn huge party when it happens.

And lastly, I’m writing this piece because I have two photos on my wall. Side-by-side. Both 8×10’s. Both school photos. One of Sawyer from preschool this year. The other one is of Cooper at age four from his Pre-K program. I look at that photo every single day and I wonder how we got so far from the typical path. And how time seems to be frozen where we got off.

Those photos are a reminder to celebrate the boys that I have. And take nothing for granted.

I’m acknowledging that it’s hard for every parent that has ever felt this way. I understand friends. It’s ok to say it out loud.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.