Riding The Roller Coaster….
I got a call yesterday afternoon from Cooper’s school. It was a man asking me about our experience with Fraser. He said he didn’t have any specific questions and would like if I just spoke freely about our experiences. I told him an overview of our story and that we loved Fraser. It has changed our lives. He was the sweetest man and said he was at a loss for words at the love we have Cooper. He then went onto tell me that his autistic nephew is 11 and nonverbal, but communicates with an iPad and is doing wonderfully.
And my stomach dropped.
I immediately wanted to get off the phone with him. I was actually sitting in the parking lot at Fraser and I felt like I was suffocating. I wanted to get my kid and leave. But, I couldn’t get him off the damn phone. He was being so nice and I knew if I said anything I was going to start crying so I quickly mumbled that I had to go.
I grabbed Cooper quickly and left.
And I called my husband. And I immediately burst into ugly tears. I act so tough. I act like I don’t care that Cooper doesn’t talk. I act like I accept that he ‘may’ never talk. But that is a load of bullshit. I do care. I choked out the story about the 11 year old nonverbal boy who uses the iPad.
I am a monster. I don’t want that. I don’t want a nonverbal 11 year old. I didn’t even really think that was a possibility. I’ve never really accepted that Cooper might NEVER talk. Like, never, ever. It’s so heavy that I can’t even process it all at once. I have to break it into time frames. Like, elementary age, teenager, adult, etc. And then I’ll be gone. Who will take care of him when I cam gone?
So, as you can imagine, I spent the evening pretty low.
And then this morning we had an appointment with a pediatric ear specialist for Cooper’s chronic ear infections. And he brought me right back up to the land of the living. Or, at least if I was normal it would have. He wants us to go to a pediatric neurologist to get an MRI of Cooper’s brain. His exact words were, “After spending 20 minutes with Cooper I don’t understand why he isn’t talking. His vocals are great. His eye contact and socialization are great. And most importantly, he understands everything we are saying. Let’s make sure we aren’t missing anything and hopefully get this kid talking.”
First, what an amazing doctor. Second, let’s slow down on the bi-polar express please. I can’t handle the ride anymore. One day I’m up and then next I’m down. It’s exhausting. Wouldn’t it be easier to just not hope anymore?
I left there and went right to meet with Cooper’s therapist. She gushed at how well he is doing and thriving. I know I should be happy. But here is the deal. Yes, Cooper is thriving in this setting. But this isn’t a real life setting. Real life isn’t going for a walk every few minutes when life get’s stressful. Or playing with squish toys.
I know I blogged about this before. I know I need to be thankful for the strides that he has made. But sometimes they aren’t enough.
I snapped Jamie when I got to work. I really am sorry that I am heartbroken. I just can’t help it anymore.
No, real life isn’t going for a walk every few minutes or squish toys. Real life *is* knowing how to regulate yourself and he is learning that from going for walks and squish toys.
It’s okay to be sad, lonely, and frustrated. It’s okay to take time to wallow a bit. It’s okay to be heartbroken. I hope you have someone near you who can just sit next to you or maybe hold your hand. Not to whisper great words of encouragement (though hopefully those come later) but to just sit and allow you to be sad and heartbroken- to hold out their hands and hold the pieces of your hard so that when you’re up to it you can start to put them back together again.
Being sad and heartbroken is okay. It sucks those days are necessary, but it is okay. It’s hard to see where they might be ten years from now when all we have for context is how they are today. The ups and downs of this life are crazy. Just know you’re not alone.
Hugs friend!!
“Yes, Cooper is thriving in this setting. But this isn’t a real life setting.” I totally get it. My kid also does great at therapy and in special education school. But out in the real world, it’s an absolute disaster. I can’t imagine how my heart will ever be whole again. I’m with you sister.
I don’t really think about the future for my son, I just take it day by day. Maybe my kid will be able to communicate better at some point, but I can’t bet the mortgage on it. With my own disease (where I didn’t respond to medical treatment ever) I found that too much hope IS a killer. Low expectations are how I get by best. My husband can only cope by having HUGE amounts of hope. You’ll find the style that works best for you.
Is your son nonverbal? I feel like we are soul mates!!!!
My son has some words, however, he can’t do much meaningful communication. He makes a LOT of nonsense noises (I believe this is verbal stimming), he has lots of echolalia, and most often he’ll choose not to use his words at all. Doctors tell me it’s “fantastic” that he has some vocabulary, but if he can’t effectively communicate 95% of the time, it’s really not all that helpful.
I cannot imagine your pain of never hearing your son say a single word…my heart bleeds for you and Cooper. I think about you guys all the time.
Sometimes I think I should stop blogging and just direct everyone to your blog, because you’ve basically already said everything I have to say…except you’ve said it better. My biggest emotion is that my heart is BROKEN…and broken in a way I feel not many people can understand. A lot of ASD moms I talk to don’t seem to have this same kind of brokenness that we have. I’m so thankful to have found you…you’re my link to sanity!
Oh mama. I just saw this comment. You made me cry. Yesterday Cooper had a really ‘autistic’ day. The first one in a long time. It crushed me. I am not lying when I say my heart actually broke. I sobbed. And then sobbed again this morning as Cooper sat on the floor next to me playing blocks. I wish I could truly describe what it is doing to me. Or I guess what it already did. I don’t think I will ever be whole again. And then I think….God, I am such a freaking baby!! I have a kiddo that’s healthy. I should just get over it. But I can’t. I can’t move on. It’s like I am stuck. Hugs to you!!!
Thinking of you. I am still often “sad” but sure “tired” or “ok” is what I say. The world is a cruel place for kids who are not caught up on things society views as important. I just keep praying. It never feels like enough.
One more thing: Samantha from The Light Is Too Loud (https://thelightistooloud.wordpress.com/) was a totally non-verbal, rather violent autistic child…with speech therapy she found her words, I think around age 7-8. She still has many challenges but is fully and eloquently verbal, going to college, is married, and has made several YouTube videos that you can see on her blog. She believes many nonverbal autistic children will reach an age where they find their words, just like she did, and urges parents not to give up hope. It’s an interesting blog if you have time to read it.
I am going through something similar. Just wanted to say I really resonate with your blog and have laughed and cried while I read it. You and I think the same way about things.