So, in Part One of My Life As An Autism Mom, I talked about the challenges of being an autism mom and what that journey has taught me.
I felt I needed to do a part two so I can further discuss what I am still learning on my journey being a parent to an autistic child.
Autistic folks take things very literally. Like when I want Trey to speak louder, and I tell him to “open his mouth” to project his voice when he is reading; he will literally just open his mouth. He also suffers with echolalia, which is where the child repeats things people say and has a hard time with two-way communication. Trey will often answer a question with that same question or just repeat back a response you gave him. Trey struggles to give authentic answers and we often have to do what I call scripting, which is me providing Trey with examples of appropriate responses to the questions. I’ve been practicing this with Trey for a few months now and am finally seeing improvement in his ability to come up with spontaneous responses.
Trey also struggles with following multi-step directions. I have to be sure to keep my sentences short and only give him one direction at a time. Information overload is a thing that autistic children or adults struggle with and it’s important that we accommodate this challenge by slowing down, simplifying things, and making it easier for them to understand. Repetition may also be part of what you do when talking to someone with autism, which comes naturally for me anyway since I’m a mom. I recognize that I must exercise patience with Trey when it comes to completing tasks. He is not going to get it just based on context clues. It’s very laborious “spoon-feeding” words and acceptable responses to him but the autistic brain works differently and that’s a fact. I cannot expect him to just understand things the way me, my husband, and my other son do because we are neurotypical. Trey struggles with receptive and expressive language that just comes naturally to us. Every day he struggles a little less and the progress he makes is what I hold onto.
You also must be an advocate for your child/children with autism. NO ONE can do it like you can. From my experience, the school system will only do as little as you allow them to. Meaning that if you want them to do more, you have to be in constant communication with them. I speak to Trey’s teacher and speech therapist weekly. For me, those are the two most important professional supports in his life right now and I have to make sure that they have Trey’s best interest at heart and that they are working together. We communicate over email, and I have met with them at school. Don’t just wait to meet or communicate with these professional supports at the annual IEP meeting. Your children are in school 185 days a year (if they are in NC) and you want your intentions made clear to your child’s IEP team all 185 days. You need to maximize as many of those days as possible to help your child reach his or her potential.
I cannot speak about anyone else’s experience, but I’ve learned a thing or two from my own and I truly believe that autism does get better with time. As the child grows and matures, they overcome old challenges but then are faced with new ones. As an autism mom, I feel more confident in confronting those new challenges. I do admit that I come from a place of privilege in that I’m educated, financially secure, and have the support of a two-parent household. This of course helps A LOT. However, I do think that anyone is capable of being a fierce advocate for their autistic child and being sure that they get their child’s needs met. It’s always possible if you put your mind to it and you have the potential to remove any barriers your child faces.
I could go on and on, but I have kept you long enough and I hope that you find value in my story and experience. I am only an email away so don’t hesitate to reach out if you have any questions. We are all at a different part of our journey so if I’m further along than you, reach out for resources and know that I’m always willing to help. I am also open to resources from those who are dealing with the challenges of having an autistic teen like mine.
Be good to yourself and others and take care!