A few weeks ago our family visited The Great Wolf Lodge in Bloomington Minnesota. This was a big thing for our family. Huge actually. Just like most kids, our boys love swimming. They love lazy rivers and wave pools. They love going places. And they love the idea of staying in hotels. But, and it’s a huge but, it’s not that easy for our family. Our oldest has autism. And while he loves to swim, it’s often overwhelming for him. Waterparks are crowded and loud. There is a lot of…
This year, we stand on the edge of the end of your 5th year, right on the precipice of you turning 6. It has been over 3 years since I last heard your voice elicit words spoken from your heart as you yelled goodbye to your beloved garbage trucks as they turned out of our neighborhood out of sight. Now, you rarely glance up to watch the garbage trucks when they come by. Most days, I really cannot believe we are here…I thought we would have heard those words again…
I’ve been thinking a lot about hope lately. And the right amount to have. Which is a funny thing to think about really. Because, how can one have the wrong amount of hope? My son has autism. And somehow, no matter where I am on the ‘hope for his future’ spectrum, I seem to have the wrong amount for some people. If I hope for words, I am told I should really be hoping for communication. If I hope for independent living, I am told that I’m not accepting reality.…
I’ve been called negative. Depressing. Dark. I’ve been accused of not loving my child. Of being weak. Of being a bad mom. All for saying severe autism is hard. And scary at times. I’ve spoke up. Spoke out. And refused to give up. And I’m here to say it’s paying off. This kid. This amazing, funny, smart, kid. He’s thriving people. Anti-anxiety medication and an amazing ABA team have helped him more than I can even put into words. But I’ll try. Because that’s what I do. He’s so happy.…
To the boy that grew only in my heart, I still think about you sometimes. Not as often as I did in the beginning. But sometimes when things get lonely and dark you wander into my mind. You stand there smiling at me. Sometimes you talk to me and tell me all the things you love. Sometimes you show me your favorite toys. Sometimes you teach your little brother things and I watch him look up to you in awe as you take care of him. Sometimes you play with…
My son, you are different. Different in the most best possible way. I realized that today. You are not like the other kids. And there is absolutely nothing wrong with that. Not in anyway. You are the brave one. Because you have no fear about being exactly who you are. We were at the park. The cool one in the neighborhood. At least that’s what your brother says. We finally convinced you to walk over there. You were scared at first. We had to make some new turns. Go farther…
You’re missing out. Parents of special needs kids say this in their head all the time. At least I do. You’re missing out on having her read all but a few words. You’re missing out on giggly girl sleepovers. You’re missing out on having her on middle school honor roll. You’re missing out on her excitement from passing the driver’s test. Prom. College, moving out. Wedding. Children. So many things to feel bad about missing out on. Milestones and rites of passage that just don’t apply in your situation. But…
Yesterday, I walked into my living room on a mission. Which isn’t a rare occurrence. My hands were full. Dirty laundry. Photos. A bag of rocks. A few dozen Pokémon cards. I was in my own world. To be honest, I believe I was muttering something about how no in my house picks anything up. And then I heard… ‘M. O. M.’ It still stops me in my tracks. Cooper saying mom. Cooper saying anything. We have one word right now. After 8 long years. And it’s absolutely beautiful. Of…
Being a mom of three is hard work, especially when you are a mom of a very special little boy who happens to have Autism. As of now Connor is almost 3 years old. It doesn’t seem very long ago when we were at his 18 month well child. My world turned upside down as his MCHAT scored him high risk for Autism. I don’t typically cry and part of me is really embarrassed that I cried, especially since I had a feeling anyway. He showed all of the signs.…
Severe Autism… I did a brief radio interview recently explaining our version of autism. I discussed the isolation, the lack of help and support, and the lack of understanding and acceptance for severe autism. Tim Nicholls, who is the policy manager for the national autistic society, responded to my radio interview yesterday. I’ve listened to his response. I want to talk about this part that he said below… “It doesn’t need to be something that is always holding them back, with the right support, depending on their needs, children with…
