With April being Autism Awareness month, I thought this was the perfect time to do this interview. I’ve been following Nicky on Instagram for the past two years. She has an inspirational, positive feed (Nickys Day) showcasing her days as a mother of a child with Autism. Her son, MJ is 12 yrs old. I can tell from his photos that he has a loving, sweet disposition…that face!
So let’s jump right in. (I’m AP and she’s NB)
AP: Nikki it’s so great to finally speak with you, I feel like I already know you from your Instagram feed! Why don’t you go ahead and tell us why you started your blog.
NB: My son MJ is 12, he’ll be 13 in May. He’s funny sweet and loving. He’s an amazing kid. I’ll just be honest, I didn’t know a lot about autism when he was diagnosed. I’ve been blogging for two years, because now I can talk about it. I thought about how I felt and decided if I can help someone else then I’m going to do it I want to give other parents hope. There is light, they just have to hang in there.
AP: I feel like I’ve learned a lot about you listening to your interview on The Skinni podcast. There you talked about what it felt like when MJ first received the diagnosis of autism. Can you talk to us a little bit about that?
NB: The first time you hear it, you think your life is over. You think, why is this happening. I went into a shell, trying to process and accept. I let myself cry for a day and then it was time to move forward and help my son.
AP: How did you do that?
NB: I was doing research and wondered, did I miss something? But I knew I had to do what I could do. Looking back I didn’t reach out for help, I didn’t feel like anyone could understand. You feel helpless. But day by day it gets better.
AP: I am an SLP who works with many children who have autism. I’m so interested in your point of view (as a parent), about the IEP process and working with the school. Most SLPs participate in 60 to 80 IEP meetings every year. It’ll be so beneficial for us to hear what it feels like sitting on the other side of the table.
NB: This is the first thing I thought of when you asked me about doing the interview. Thinking back to when we were at MJ’s first IEP meeting…you all use a lot of terminology. Expressive, receptive, echolalia. I figured that one out because echo was in the word. But a lot of these terms were new to me. Social language, semantics, apraxia, syntax. And what does four out of 10 trials mean?
AP: I know, it’s a lot of information.
NB: MJ’s first SLP said to us, ‘he may never speak. And if he does it might not be intelligible speech.’ She explained the process well, but there was no hope.
A parent might be sitting in front of you nodding, but inside they’re thinking oh my God.
(Anne’s Note: You guys, this makes me cry! I want to make sure I offer hope and support to all the parents I work with.)
AP: As a mom, what would you like SLPs and special education teachers to know?
NB: Tell us what you actually do. We want to know what happens while you’re with our child, so we can implement it at home. I need to see it.
It’d be great to have a 20 to 30 minute training on this. Handouts explaining the terminology, so we can look at them at home. A weekly progress checklist or even a text. I know you all are busy and I know about the caseloads, I’m a middle school teacher myself.
If you don’t tell me, I don’t know. It’s not like he’s going to tell me. So many more things happen at school than they do at home. When we say our child is different at home, he really is. The MJ at school is not the MJ at home. To him school is for work, home is to relax.
You do start to feel Hope. Especially when the school shares his progress. One of MJ’s SLPs typed his first sentence and sent it to me. THOSE are the things that help you keep going.
AP: Now that MJ’s got his big 13th birthday coming up, what are your hopes for him when he goes to high school?
NB: I want him to be safe, continue to make REAL friends, improve in social skills, and continue to learn as much as he can. He’s a genuinely happy kid and I want that to continue. JOB SKILLS would be amazing as well.
I think I can speak for all of us when I say thank you to Nicky for letting us learn from her journey. I truly admire her for her candor, optimism, determination, grit and fierce love for her son.
You can find Nicky on her award winning blog Nicky’s Day with Autism . To hear more, catch her interview on shazon.com
If you’d like to learn more about autism, look at these statistics from autismspeaks.org:
- Autism now affects 1 in 68 children and 1 in 42 boys
- Autism prevalence figures are growing
- Autism is one of the fastest-growing developmental disorders in the U.S.
- Autism costs a family $60,000 a year on average
- Boys are nearly five times more likely than girls to have autism
- There is no medical detection or cure for autism
I hope you found this information helpful and inspirational. Every child needs a powerful, caring team of adults working together to empower him with education, love and knowledge.
Together we can change lives,