A recent conversation with Marj about rejecting autism and autism parenting as a "tragic battle" evolved into this interview. If you don't know Marj already, she is a proud SAHM two two boys with autism, ADHD, OCD and a variety of other acronyms. Eleven-year-old Luke is obsessed with all things Star Wars, the Titanic, catastrophic weather events and electronics. Ian is nine, nonverbal and was a fish in a former life. Marj lives vicariously through her computer, is the Queen of Procrastination and goes to Eleven.
Tell us a little bit about yourself and your kids.
I am 39, a SAHM of two boys and have a degree in special educations, even doing my student teaching in a school for autism. When my boys were born I decided to stay home for a few years because I knew the time was short.
I saw signs early on in infancy that raised red flags. Luke is eleven, diagnosed with PDD-NOS, ADHD, OCD and a variety of other acronyms. Ian is nine, nonverbal and has an autism diagnosis, as well as ADHD, MR and a seizure disorder. Both boys have piles of medical issues, significant food allergies and are always on the go, go, GO. They also have sleep disorders. Basically, our lives are never boring.
What is a typical day like? Do you have typical days?
Typical day? HAHA. A typical day for us is all about maintaining a Schedule, heading off meltdowns, and making it to the end of the day. We are always in survival mode. I get the boys off to school, run errands, attempt to put the house in order and catch up on any sleep I missed -- since a typical night has me awake several times with Ian, sometimes with Luke. Some nights Ian will sleep two or three hours, some nights eleven. When they arrive home from school in the afternoon we are outside trying to expend as much energy as possible. It's all about sensory. Ian often takes several showers a day. On weekends we have therapy, playmates a.k.a. structured therapy play, and we also hit the indoor pool. We try to keep as busy as possible, downtime is our nemesis. Although in the evenings after dinner we like to snuggle, play games, do crosswords together, etc.
Has your approach to autism parenting changed over time?
I would say so. I used to think I could just take "typical" parenting and adapt that to what we needed. Often times that has worked. But what I realized is that autism parenting, while still parenting, does take a little more flexibility, imagination and problem solving. I used to think everything was a big deal, now I realize you have to pick your battles, so to speak. I have learned to try to not be a therapist and just focus on being a Parent. It was hard to understand that my kids needed downtime and didn't need to be doing therapy 24/7. They need time to be kids! I had to show them some things so they could be a kid, though. Now if I try to do too much I get "talk to the hand" or "UH UH" complete with emphatic head shaking. Ha ha!
What do you want people to know about your approach to autism parenting?
Parenting is parenting. And while we do need to do a few things differently, we also need to learn to relax more than other parents. We have to stop thinking that we need to change every little behavior. Sure, it takes them longer to learn some things but sometimes they are just being kids. I have learned to take things in stride and not to sweat the small stuff. I have learned to celebrate every little milestone, every step, and be appreciative for every day with them. Is every day easy? Heck no. We have some pretty significant issues to deal with. We are still working on toilet training and sometimes it is, um, totally gross in our house. We have holes in the walls. Broken furniture. Most people say, "I don't know how you do it" but honestly, it's no big thing. I am a parent. Sure it's hard sometimes, but isn't parenting in general?
Are you ever taken aback by other folks' assumptions about autism parenting?
Yes. I get so many apologies, pity, negativity. It hurts me, honestly. I know this is a hard life, but my kids aren't dying of an awful disease. Sure, they have challenges but we don't need people to feel sorry for us. We also don't need people to think we spoil them, allow them to behave a certain way. Most importantly, we do not allow excuses and we don't use autism as an excuse for their behavior. Sure, once or twice I have explained to someone who was highly disgusted or annoyed with my kid that they are working on learning a specific skill and they are autistic, meaning we need some patience and practice. I remove them from situations if necessary.
For some reason, the only thing we see in the media, online, on websites, in newspapers is sad, negative examples of autism. How hard it is. How sad the parents are or how awful it is for their family.
Look, I am the first person to admit we have challenges and obstacles. But I also believe parents sometimes need to adjust their own perceptions and viewpoints. Our children feed off do them. I know sometimes self-injury is tough to deal with. But I don't let that rule our lives. I parent, just like other parents. We have a family life, just like other families. Adjusting your thinking brings you hope. Helps you to realize that no one's life is The Cleavers. We all have our burdens. We all have challenges in our lives. Your life is what you make of it. You can accept what you have, move on and focus on helping your children reach their potential or you can be sad, cold inside and not enjoy your life. For me, it was a very easy decision.
Do negative media stories about autism and autism parenting ever affect you or your mood?
Yes! Because I think it perpetuates stereotypes! Sure, my life is difficult. I don't get out as much with my friends, my non-autism friends don't always understand why I can't go out at the drop of a hat or I can't go to a certain restaurant with my child and have to find a sitter. But I want people to realize that every child with autism is different. They all have unique gifts. They all are intrinsically beautiful and worthy of love and respect. They are children, first and foremost.
Due to media negativity people tend to make assumptions about our life. And it couldn't be further from the truth. Again, everyone's experience is different. We are all at different stages of mourning and acceptance. But you must move on at some point in your life; your kid needs you. They need you to focus. You are totally missing the big picture if you haven't accepted them for who they are and are still hoping against hope for something that will never happen.
My focus? Plan for the Worst, hope for the best. Also? Humor helps. I tend to be sarcastic and joke a lot. I choose joy. :)
What do you want people to know about your kids?
My kids are amazing. And they will do amazing things. They aren't spoiled, they aren't freaks, they aren't contagious. They don't need pity. They are also not faking it. I have actually had people accuse me of having my mindset because my kids weren't autistic enough, like there is some type of hardship Olympics. Thats when I tell them about the poo, the holes in the wall, the lack of sleep, the ruined furniture and floors. Believe me, we have plenty to deal with. We just choose to focus in other areas. I have been accused of being abusive towards them for vaxxing, or not trying certain interventions. It's unreal. I am just trying to parent, to the best of my ability, jut like everyone else.
Do you have role models, or can you tell us who has helped you shape your approach to autism in general?
I follow blogs of autistic adults and read everything I can get my hands on. The one thing I notice from some of the more prominent autistic adults is that many of them had parents who placed no limitations on them and wanted them to succeed to the best of their ability. I want that for my boys. I also want to respect them and see where they are coming from. This is crucial to other parents, too. They need to see it from both sides.
I am lucky to have a very large and close family. They are such an amazing support group for us. I have also been fortunate to have other parents locally that have been through all of this, navigating the system long before me. Forging the path, so to speak.
My father was my biggest cheerleader. He accepted our children from day one, always focused on the positives, always treated them like "normal" kids. I think he would be my role model. One thing I have learned from my family is to be accepting of everyone.
Lastly, the online support world has been amazing, though I have found my share of negativity. In cyber space, I have also found amazing websites, blogs, parents, information. You know, that whole "takes a village"thing? Strength in numbers? We are all in this together. Other parents are an important resource.