Posts Tagged ‘Minnesota’
10 Truths I Know About My Son’s Autism and Sleep
The number one question I am most commonly asked is…does your autistic son sleep? And if he does, give us your secrets. The questions pour into my inbox during all hours of the night. I’ll look at the time stamp and see 3 and 4 am. I’ll read the words of desperate parents wondering if they are going to survive the sleep deprivation. The answer is yes. He sleeps now. But he didn’t for nearly six years. And, most importantly, I understand. Sleep deprivation or irregular sleep is really hard.…
Read MoreWhen Your Home Isn’t Your Safe Space
I am a home body. I always have been. I love being in the comfort of my home and it’s definitely my first choice when it comes to weekend plans. And I guess in a way, that’s a good thing, because Cooper’s autism brings a high level of isolation. Some could say I even settled into the isolation faster than my spouse. He is a social butterfly. Just like our other son. Lately though, the stress of being home is catching up with me. And it’s not just the isolation…
Read MoreWhen a Doctor Told Me I Wasn’t a Terrible Mother
So, here’s a thing that happened the other day. I took my son Ivan to the dermatologist to have a look at his moles. We have a history of melanoma in the family and it seemed like the responsible thing to do. Are moles Ivan’s biggest challenge or at the top of our medical list? Heck no! Ivan is totally blind, nonverbal, in a wheelchair and he has uncontrolled epilepsy resulting in multiple seizures a day. We see about a dozen different specialists and dermatology is definitely at the very…
Read MoreMy ‘Ah-Ha’ Autism Moment
On my drive to work this morning, I was considering different topics for my February writing challenge topic and I landed on the ‘ah-ha’ autism moment. You know the one? The exact moment you realize that your child really does have autism. And it’s really serious. And you can’t hide it anymore. And your child is different than their peers and siblings. For me this wasn’t the moment our doctor first mentioned early intervention or even when he was diagnosed with autism. Yes, those moments were hard and stung. But,…
Read MoreFebruary Writing Challenge: My Ah-Ha Moment
Thank you to everyone that submitted a post in December and January. If you sent me one and I haven’t published it yet don’t be concerned. I received so many and it takes me time go through them all! Which is an excellent problem to have. This February I would like you to write about your autism ‘ah-ha’ moment. This might not necessarily be the moment your child was diagnosed. This is the moment when you realize that your child REALLY is autistic. And it’s not going away. I’ve had…
Read MoreQuestions About My Autistic Son’s Future
I’ve been on this thinking, planning and talking about the future kick. I get like this every so often. I have periods where I think about the future and prepare with energy and urgency. And then I’ll have periods where I refuse to even think about Cooper growing up. I have to block it out. It’s simply too much. Lately though, I’ve been really curious about the future. The sadness and fear have taken a back seat to my general curiosity about severe autism in adults. What does it look…
Read MoreThe Secret World of Autism
I am often asked to write about autism. Especially in preparation for Autism Awareness Month. Prior to my son’s diagnosis, I never knew this month even existed. That’s how it typically goes I guess. People don’t pay attention until it’s their life. I get it. That was me pre-autism. Now, my whole world is an Autism Awareness Month. When I am asked to write about autism I struggle with finding the right words. Autism makes up a million different stories of hope, love, adversity, struggles and beauty. How do I…
Read MoreMy Son, You Are So Much More Than Autism
Oh, my little pumpkin, what a strange, crazy, exhausting ride this autism thing has been. How did this happen? You were my surprise baby in every way! It was a struggle to get pregnant with your brother. We tried for two years then with the help of fertility pills I finally got pregnant. My doctor told me if I ever wanted to get pregnant it would have to be very planned because I would have to be on fertility pills. I don’t ovulate. Sixteen years later at age 41…SURPRISE! I…
Read MoreIt Happened This Year…I Got a Miracle
It happened this year… I got a Christmas miracle! When you have a kiddo with autism, or delays of any kind, there’s this period of grace. It’s the season of life where adults (for the most part) have or gain some knowledge. It’s the season of life where older kiddos are curious and learn something new. It’s the season of life where kiddos of the same age and younger don’t have a clue. At family gatherings, kiddos just play. Side by side, sometimes joining in, most often not. Fun is…
Read MoreStop Acting Like Autism is a Death Sentence
I’ve been writing publicly about autism for five years now. Meaning, I’ve opened myself up to the world to educate and share our journey. And with that level of vulnerability comes support and scrutiny. At this point, there isn’t much that I haven’t heard. My son has been called ugly. I’ve been called fat. I’ve been told I should’ve aborted Cooper. He’s been called a retard. Dumb. Ugly. A mistake. A freak. He’s had death threats. Hell, so have I. I’ve been told that Cooper and I are stealing Medicaid…
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