**Note: I send all of the moms that agree to be interviewed the same 10 questions. Some moms choose to answer the questions one by one, and others choose to answer them in paragraph form. You can find the interview questions here. Normally I would break apart what they send me into answers to my questions. But I have decided not to do that going forward. My purpose with Meet A Mom Monday is to give special needs moms a place to tell their story, to have a voice. If you would like to tell your special needs parenting story, please email me at firstname.lastname@example.org.
This week’s mom is Laurel who has an older child with autism. I love the way she tells her and her son’s story, and I think you will too.
I was born into a family with special needs. My uncle, only 8 years older than me, had severe autism and was nearly non-verbal. Of course, “autism” wasn’t a thing and the doctors told my grandma to put him in a state hospital, but she refused. I call my grandmother a pioneer of special education in outstate Minnesota, because she had to fight, and sacrifice, and even pay for, her son’s education. She was active in the ARC and is still on the board of directors for the group home that he moved into as an adult. Sadly, my uncle passed away at the age of 42, but I really feel that he had a huge impact on the lives he touched. He taught us compassion, resilience, flexibility, and above all, to love one another unconditionally.
Because of my experience with autism, I could tell right away when my son was born that he wasn’t like other babies. Even brand new babies seem to be hardwired to try to engage with other humans. They make eye contact, they watch your mouth when you speak, they hang on when you pick them up. Dan did none of those things. He was more engaged with the ceiling fan. He rarely demanded attention. When he started making sounds, rather than mimic speech, he made the sounds of machines and motors.
My family and I knew what was going on, and thankfully my doctor and my school district listened to me. I know some people are not so lucky, but we have been getting services for him since before he was a year old. We’ve had, at various times, PT, OT, speech, PCA’s, Head Start, ECSE, ECFE, SSI, CDCS, and a bunch of other alphabet soup. In the process of advocating for my son, I have been active in helping other parents as well, through various organizations, formal and informal. One of the hardest things was that I felt it was almost like some kind of scavenger hunt, trying to get services but not knowing what was even available.
My son is 20 now, and will be “graduating” next spring. One thing some people don’t realize is the extent of grief we may feel about the expectations for our children. The first wave comes when you realize your child is different. (Read “Welcome to Holland” if you are not familiar.) As the child grows up and moves through the school system, the grief comes back in waves, every time his peers reach a milestone year and he gets more and more “different”. My son never went to prom, or walked across the stage, or learned to drive, or went on a date. Yes, he still might, but every time I see someone younger than him working at a store, or getting married, or doing things out and about in the community without a chaperone, I feel sad again.
Dan is an awesome person. He loves to help out younger kids or those less able than himself. He’s excellent at math (Remember Rainman?) and also has phenomenal verbal and memorization abilities. When he was about 5, he memorized all the license plates of our family and friends. He is quick to point out a misplaced apostrophe or a spelling error on a sign when we are driving through town. My son is just really sweet and good, seemingly incapable of doing anything bad on purpose or even telling a lie. (Have you noticed this? People with autism are often incapable of lying.)
With his developmental delay and lack of social skills comes a childlike innocence but also a dangerous vulnerability. He looks normal, and he can kind of hold a conversation, so people might not realize that he has autism. I get concerned, out in the community, that he might inadvertently offend someone and get punched in the face. He really wants people to be his friend, and that leaves him vulnerable to maltreatment or exploitation. Now that he’s an adult, what if someone takes offense when he tries to talk to their kids? It’s true, I don’t worry about him getting drunk and vandalizing the school, or getting someone pregnant, or doing drugs, but there are other things that could happen to him that feel even scarier.
If people out in the community have questions, I’d prefer they come up and talk to us, rather than just stare and wonder. I often had trouble when he was younger and wouldn’t do what he was supposed to. People, even family members, would get on my case for not being able to control him. I was really afraid for a while, not knowing what we were going to do. Around the age of 10 is really bad for many boys. They get an extra boost of testosterone and can be extra difficult, even assaultive. Thankfully, he grew out of it. So my words of wisdom are, “This, too, shall pass.” When he was a toddler, I worried that he would never learn to talk, but he did. As a pre-teen, his violent outbursts frightened me but he learned to control his emotions, too.
Besides that, I encourage parents to trust your own instincts and learn to advocate for your kid and your family. Sometimes you go to an IEP meeting or something, and you feel like you’ve been thrown into the lions’ den wearing a pork chop necklace. Don’t be afraid to ask questions, make demands, be the bitch if you have to. Don’t let them bully you. You can always tell them you want to take it home and sleep on it. If you do feel like you’re in over your head, ask someone to come with you. A friend, a counselor, an advocate from PACER, an attorney. Use the resources that are available to you. Ask the other parents. Google it. Remind the caregivers to focus on your child’s strengths.
Above all, take care of yourself first. Create a menu of self-care; you have to be healthy yourself before you can take care of someone else. You know what they say on the airplane: Put on your own oxygen mask before trying to help those around you. Don’t forget to enjoy your child. This, too, shall pass.