Ashley Manuel, of Batavia, with her first self-published book, “I Hate Autism Not My Child”. Manuel says her book is a parent’s point of view, a mom raising a child with special needs.
Bringing up children has its challenges each and every day. When you add a diagnosis of autism to the family dynamic, things change for the entire family. From simple things like attending a sibling’s sporting event or sleeping through the night. The family unit, as a whole, must come together as a group to help out each day.
Ashley Manuel started journaling to help with the emotional aspect of bringing up four children, and a diagnosis she hadn’t planned on.
“Well, what kind of started it is, when he (Nicky) was diagnosed (at age 3), I was lost, and scared. I was already a mom of three, but then having a child with special needs kind of rocked my world, and I didn’t know what to do, so I started joining all these mom groups,” says Manuel.
After being involved in the mom groups, Manuel realized she didn’t feel the same way about autism as other moms in the group.
Ashley Manuel with her son Nicky who is currently 7 years old and nonverbal. He was diagnosed with autism at age 3.
“I noticed that there was all this acceptance and awareness and kind of celebrating, and I was feeling very different from that. I was struggling really. So, I started therapy, and the therapist says to start journaling. Just start journaling all the things you don’t say out loud in every place that you want to say it, even to my husband (Nicholas), I really didn’t let him know how much I was struggling with it. And so, I started journaling and for a long time, and eventually they started becoming chapters of how autism creeped into every aspect of my life, even with his siblings and marriage and the world around me and how they perceived my son. So, I started categorizing them into these little sections, and I never thought it would go anywhere, honestly, until one of my friends, Deborah Foley, I told her about it, and she’s an author, and she’s like, you have to publish this after she read it.”
Foley is now on her fourth book and writes young adult novels.
“I said, I don’t even know where to start. I don’t know how to go about it. I don’t think it’ll be accepted very well, and she was like, I don’t care, we’re doing this, and even if you don’t publish it, guess what? You have it right, and it’s yours. So, we started the process, and it took a very long time, and a lot of editing, because I am not good with grammar or editing. It was mostly word vomit onto a page into my computer.”
Putting the chapters together with Foley, Manuel could see the book taking shape. She says she then felt scared and vulnerable about putting herself and her words out in public, but Foley continued to encourage her.
Nicky with his dad Nicholas
“She was like, you can do this. I know you can do it. And she kept pushing me. And so, then I said, well, I got to have one other person read it, you always want that good feedback. So, I let my husband read it, and in 16 years, I have seen this man cry maybe twice. In 16 years, he’s just a pillar of strength. He’s calm as a cucumber all the time. Nothing really shakes him. Oh my gosh. He wept. He was like, it’s so good. It’s so good. So, I thought, okay, If I got you behind me, I’ll do it. I’ll put it out there.”
Manuel says she went through KDP (Kindle Direct Publishing), which is self-publishing through Amazon. She says the only hard part of that is you have to market the book yourself.
Link to Ashley Manuel’s Author page below:
” I Hate Autism Not My Child” can be found on Amazon.
Manuel says her book is a parent’s point of view, a mom raising a child with special needs.
“This is a love letter to other parents to say it’s okay to be human and it’s okay to not love and celebrate every part of what comes with autism.”
How did you come up with the title?
“I have to be honest, it’s the second chapter in the book, and it’s how I felt, you know, there’s a fine line in the autism community. And some people think that autism is who you are. They’re defined by it, right? Other people feel that, no, I am Nicholas, and I happen to have autism, and I see that line, and I’m fully aware that the title is not, and already has been not really accepted very well.”
Manuel says when she started creating the book, the title of Chapter 2, “I hate autism, not my child” made her very emotional.
“When I typed it into my computer, I remember weeping. And the first time I said it, I remember weeping because it comes with a lot of guilt and it comes with a lot of shame, but it also comes with being human and saying, this is hard, and I’m struggling, and we need help. Parents, all the time I see in all these groups and everything, they’re struggling, and this is hard for them. And it’s okay to say, you know, I hate this sometimes. Doesn’t mean you hate your child, right? You know, in fact, we probably love our children. That is my golden child, you know, I have four of them, and you know that they are like, oh, Nicky’s your favorite, you know? But he’s the one who most needs me. And I feel like every parent, when you have multiple children, whoever needs you the most in that minute or that day or that, you know, that’s who you have to focus on. And unfortunately for them, for my girls, which is also a chapter in the book of being a sibling of a kid with special needs, he needs me the most all the time.”
Manuel says she has had talks with her girls and has apologized to them for the things they might have to miss out on.
“Our whole family really goes around autism and Nicky’s disability, so going anywhere or doing anything as a family, there’s a lot of preparation, sometimes we just can’t go, a lot of times we go into it unknown and then we leave early, and my girls have to endure that, you know they’re having fun, their safe, but then they look at us and it’s kind of that face, and it’s like sorry we gotta get out of here, we gotta go.”
Nicky with his siblings
Manuel says her three girls, Leilah(15), Miyah(13) and Stellah(10) are very understanding, and they get it.
“They are just amazing, amazing siblings to this little boy. I’ll take my last breath on earth with peace because I know that they’ll watch over him and make sure he’s okay, wherever he is, he will have them always. They showed me how to play with him, they were just silly and loud and included him and got into his world and his space, it was magical to watch, and they still do, it’s such a blessing. I hear so many parents worried if they have a child with autism wondering if they should have another one, can we handle this, can we add another onto our plate. You are going to have absences, you are going to have a lot of attention to the child with special needs, but that sibling is a blessing. In turn, my girls are compassionate, empathetic, they know autism. They see special needs kids in their school, and they instinctively look out for them, they include them, they say hi. It’s not odd to them, it’s just autism. They know it, they love him, and he loves them, his laugh is the deepest and the loudest with his sisters, I can honestly say they are his only friends.”
Manuel says navigating the school system with a child with special needs is also difficult and challenging.
“You don’t know the laws. Just being a parent, I ended up hiring a parent advocate, which was a dream come true. I really advocate for that. Hire a parent advocate.” Manuel says a parent advocate is usually free through the NYS or the school.
After first learning of a diagnosis, Manuel says it’s important to find your people.
“Stop googling. That will only lead you down a rabbit hole of being scared, right? Find your tribe, find a safe person, find somewhere where you can be yourself and say the things that you want to say.”
Manuel says she is part of five different Facebook groups that give her a place to share with like-minded people.
“The reason why I like them is because they give their honesty in it. They talk about the struggles that they’re going through, and often you’ll see in the comments where they’ll give tips or tricks that have helped with those struggles, or just encouragement, and that’s really what you need to hear. Most of what you want to hear is a parent raising a child on the spectrum is that you’re not alone.”
Manuel’s advice is not to plan any further out then one year.
“Live in the moment. You’re doing good, and you’re doing great, and it’s okay to be human, and it’s okay to feel like this, and it’s okay not to celebrate everything about autism, because being a parent, from a parent’s perspective, it’s not always great, it’s not always wonderful, it’s scary and it’s lonely and it’s painful, it’s very painful.”