A Letter to my son Daniel: It’s hard to believe you are already fourteen months old, as it feels like just yesterday I was holding you in my arms for the first time. I know you are still a baby but I hope to read you this letter one day when you can better understand it all. Watching you grow and reach exciting milestones this past year has healed my heart in so many ways and brought so much joy to my life. You are always smiling and laughing and…
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.…
With the flip of a page our Speech therapist asked our son Jojo simple questions as part of an assessment update. The first ones he nailed, naming objects like girl, ball and horse. Then it was, point to the spotty dog IN the box, the teddy UNDER the bed, the dolly with PINK pants. With each line of questions the answers were less correct. These simple questions, that a three year old would know, yet my boy who is turning five next birthday can’t answer. The therapist closed the book…
Exactly one year after we received our oldest son’s diagnosis of autism, the four of us are on our way to celebrate a cousin’s birthday. It’s a children’s birthday party, and I’m terrified. Weeks before I had tried to insist to the mother that the dates that were picked wouldn’t work for us, but I was just trying to shield my child. Now here we are, parked in front of their house. I’m always anxious when we stray from our routine, or should I say from Zachary’s routine. As a…
I am the parent who is judged. And the parent that I used to judge. I’m the bad parent that can’t control her child. I’m the parent with the backpack leash. I don’t care if you silently mock me or condemn me to parent hell for my child wearing it. You’d surely condemn me if he let go of my hand and darted into traffic, which he would try to do, because he doesn’t understand danger. Two years ago my sister and her daughter came to my house. Her daughter…
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…
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…
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,…
I’ve learned that girls with autism are better at masking their symptoms than boys. They are able to watch social situations between people, and then copy what is being done. So, when they have their own situation arise, they are often just using what they have learned from seeing other people interact. Also, girls with autism usually have special interests but they are more in line with typical girls their age. But when you look closely, they are much more intense about them than typical girls. Before my daughter Lillian…
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…
