Tough parenting
The Life He May Never Get To Live
My son, Rowan, will be two in January. At four months old Rowan was diagnosed with Tuberous Sclerosis, a 1/6000, rare, genetic disease that causes epilepsy, tumors to grow in all major organs and development delays including autism. My love for him is bigger than life itself. I want nothing but greatness for him, for him to flourish in every way imaginable. And here it is ladies and gentlemen…the “but” we’ve been waiting for: But… But I hurt FOR him. I cry FOR him. I think about the life he…
Read MoreNothing is Normal About Today
I spent this Thanksgiving in Baltimore, split from those I love. Instead I spent it with my son and with families that feel the same aching, haunting pain that I do. We sit as strangers, yet we know each others stories better than our own relatives. For at today’s table, we are reminded of that, as our chairs remain vacant at the homes we have left behind. As life continues stirring around us with no one really understanding what we feel. Expect these strangers I celebrate with today; they do,…
Read MoreIt’s Okay To Not Be Okay
I know a lot of friends are waiting to hear about our day at the Mayo Clinic. I have so much to say. And tomorrow I will do a video. But tonight I am sad. And I’m just going to be sad for a while. Autism is so unbelievably hard. Some part of me always believed that this was going to get better. I thought maybe, just maybe, someday, he’d snap out of it. He’d start talking. He’d tell me about his day. He’d call me mom. I thought someday…
Read MoreI am my Autistic Son’s Person
I am my seven year old autistic son’s person. I have been since the day he was born. He looks for me in a crowd. He seeks me out in our home. He demands me. He is always touching me. If he is wandering he demands that I am the person that follows behind. If I take a break to relax than he is clinging to me until I get up. And until recently he never developed relationships with other people. He didn’t see the value. People in our lives…
Read MoreYou Are Not Failing As A Mom
When I think about my life with autism and motherhood, I like to believe that I take chaos in stride. I try to find joy and approach most struggles with optimism. That’s just me. And honestly, the only way I can survive with my sanity. In saying all that, sometimes it all gets to be too much. Lately, I feel like I am waving the white flag. Surgeries, birthday parties, Pink Eye, pee, messes, snow pants, dogs, jobs, and overall feeling like crap is taking it’s toll on this mama.…
Read MoreThe Emotions That Accompany Special Needs Parenting
One of the main reasons I started blogging about my life with an autistic child was to help other parents learn to talk about the emotions that go into raising a child with a lifelong disability. I knew what I was feeling and I knew I couldn’t be alone. Yet, it felt that way. The Roller Coaster If you are anything like me the whole thing feels like a rollercoaster. In the beginning you would’ve done anything for your child to not be on the spectrum. Maybe you were in denial.…
Read MoreThe Emotional Weight of Autism
I am the mom to an amazing kiddo. He is almost seven. He also happens to be autistic. We have a bond that is indescribable. I am his voice. He is my purpose. I can read his mind. I can understand every scream, grunt, flap and hum. I know what he needs when he points to his Kindle. I know when he’s hungry and thirsty just by the look on his face. I just know. It’s my job to know. It’s my life. Parenting in general is not easy. We…
Read MoreWhat Having A Child With Autism Has Taught Me
When my son was first diagnosed on the spectrum I immediately dove into research. That’s the kind of mom I was. I wanted to be educated. I wanted to help my son in every way possible. Of course I took a few days to be really sad. I’m not scared to admit that. The diagnosis, although not unexpected, hit me like a ton of bricks. I remember I felt like the rug had been pulled out from under me. I didn’t know what to do, how to act, or where…
Read MoreWhen Your Child’s Disability Consumes You
A reader asked me yesterday…’My son has autism and I’m not depressed. I know that. But I feel like his disability is consuming me. Help me please. Why is this happening? I don’t even recognize myself anymore.’ I reread her message over and over again. I related to her with every fiber of my being. At 34 I have been on the Autism journey for almost five years now. I work. I have two kids. I have friends and family. I have a full, busy life as most would say.…
Read MoreAutism and Regression
Hey all. Yesterday we had a heartbreaking day and it hit our family pretty hard. And to make it worse it seems that something is super ‘off’ with Cooper. We can’t seem to get him regulated and as we sat and analyzed his behaviors last night we realized he’s been off for over a week. And for the life of us we can’t figure out what’s changed in his world. This regression is dramatic. And a huge shock. This is one of the hardest parts of raising a nonverbal kid.…
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