In honor of Autism Awareness Month, I interviewed my friend Harmony. Harmony is a single mother of two beautiful girls, and her oldest daughter, Linda Sue, has Classic Autism. As a mom of two young boys, I'll be the first to admit the possibility of having an autistic child scared the shit out of me. Since Harmony is such a badass, I asked her to help myself and other parents learn a little more about what it means to have a child with Autism.
How and when did you first find out that Linda Sue (Lu) had Autism Spectrum Disorder?
In August of 2010, Lu had her “screen by three” screening for Kindergarten readiness; she was almost four and I had a three week old baby with me. First, she wouldn’t go into the screening without me and then once there, had a hard time completing any of the tasks. I can’t remember exactly what she scored but it was horrible, something like three out of twelve. We were then sent into another room to talk with the head nurse for MPS. She attempted to do a vision and hearing test and that was a no-go. I remember holding the baby, watching my three year old run in circles in the room while the nurse was talking to me and just being very sad. By this time, I knew that there was something a bit different about my Lu. We’d done some ECFE classes and I got to see her around other children and she just didn’t act the same as they did in a classroom setting. After the screening and at the advice of the school nurse, I made an appointment with our pediatric nurse practitioner and she referred us to a testing center. She warned us that we might hear the term autism and to not be scared. My (now ex) husband and I had already been discussing the possibility and I’d been doing some reading on autism so I felt pretty prepared moving forward
Four months later, in December, we finally had our first appointment and in we went for a half a day of tests, which thankfully all felt like play for my Lu. In January of 2011, I made my way back to the center and met with the doctor. We had a diagnosis: classic autism and developmental delays with expressive and receptive language.
After the diagnosis we headed back to the school district for their testing (this was a long ass process) In March of 2011, we finally had both a medical diagnosis –and- school diagnosis and a week later, she started in ECSE (Early Childhood Special Education) Lu rode a tiny bus to a preschool that would begin our journey within the Minneapolis Public School's Special Education Department.
It must have been a scary time. How did you break news to family and friends and how did their reactions affect you?
As soon as we started the process after the initial kindergarten screening, I had talked with my mom and the rest of my immediate family about what was happening. I’m very lucky to have an incredibly supportive family that did not question or second guess the doctors, school district or us during this time. Some folks meet resistance because they don’t want to believe anything is wrong with their kid/grandchild/niece etc. My now ex-husband’s family was equally supportive. We felt wrapped in love as we navigated through this process.
After everything was official, we decided the best way to let our friends know of the diagnosis was through Facebook, but we didn’t want to just do a standard status update so we sent out a message with the news and a few links about autism and what it is. Everyone was very supportive and we received messages back filled with love and support and encouragement and my mom helped out by letting the rest of our large extended family know
Did your life change dramatically after her diagnosis?
Life didn’t change too dramatically regarding my parenting as I was already doing things to help her; she hated loud noises and would get visibly anxious and upset when it was too loud so I’d use my hands to cover her ears (eventually I bought her ear protection which have proven to be a life saver). As a mom, you know your child so well and you just naturally make accommodations as needed. I think what changed the most was now I had a reason why my kid didn’t always seem to hear me or want to play with other kids or couldn’t figure out how to climb the climbing structures amongst the many other things that set her apart from her peers.
Once you start down the autism parenting path, you are thrown into a different world with a new vocabulary to learn and a whole system to figure out and therapy options and acronyms to learn.
And then there’s the approach you take to dealing with autism. Armed with Google search I encountered the world of people who want to "cure" their child with autism. I read about intensive one-on-one therapies that lasted upwards of 40 hours a week and restrictive diets (Gluten free and casein free) and even people condoning dangerous bleach enemas (please don’t ever ever ever think it’s a good idea to put bleach into your child’s body cavities.)
I continued reading and educating myself, listening to my child (all behavior is communication; even if she wasn’t actually saying much, she was saying quite a lot) and have created our own path which doesn’t involve any sort of cure.
So yes, life is dramatically different now because I’ve become an expert and advocate for my autistic child. I never imagined this would be my path when I was pregnant with her eight years ago and just starting my parenting journey.
Did her diagnosis affect your decision to have another child?
We already had another child when the diagnosis came down but you best believe, I was vigilant and watchful for any early signs or indicators of autism with my second because if she had any, we’d start down this path a lot sooner now that I was aware of the signs.
Speaking of the two of them together: how are they different when they’re together/apart?
Cadence has been a giant help to Lu; they are best friends and Lu has learned a lot from her little sister: how to play with another child, how to take turns, how to watch out for each other. Some of that is taught at school too but having a sibling in the house all day, everyday really has taught Lu so much.
Lu also talks more when she’s with her sister and is more imaginative in her play; there are lots of smiles and laughter and fighting. Mostly, it seems like a typical sibling relationship.
Cadence seems to be pretty much the same when Lu is or is not around. She is a leader and it shows; she directs play often and gets upset when Lu is done playing and just walks away (we’re working on that behavior and trying to get Lu to tell Cadence when she's done playing "it’s rude to just up and leave…" etc)
Navigating the world of meltdowns with both girls in the house has been a challenge. How do I explain to my four year old what is going on? Why her sister hitting and throwing things at mom?
A lot of your life is dedicated to making sure your kids succeed (just like any mom). What do you do to take care of yourself?
I started running a couple of years ago and it’s become my therapy. I force myself to make time for friends, which is hard because I have the tendency to isolate myself and I have regular check-ups with my doctor.
What words of advice do you have to someone who has just found out their child has autism?
- Find your support group. Find people who will support you and be positive and will listen to you and will let you cry and grieve and then be there when you are ready to move forward. Also, listen to your gut and listen to your child; you know them the best! If a suggested therapy feels wrong or is not a good fit for you and your family, don't do it! There is no one right way and you have find the right way for you.
- Realize that it's okay to make decisions and later change your mind; that’s totally part of the journey.
- Once you realize that all behavior is communication, the better you’ll be able to “hear” your child, no matter their verbal skills.
- Hone those critical thinking skills because you will wade through a lot of crap, pseudo-science and “recent studies show” articles.
- Understand that most people’s advice (this included!) is coming from a good place; try to be gracious even if they have no idea what they are talking about.
- Fight the urge to isolate yourself. I have turned down many invites because the idea of managing Lu’s behavior was too overwhelming and I’d not have any fun anyway. While that’s valid and understandable and necessary, don’t decline every invite. Find solutions, have people over to your place so your kid is in her space and more comfortable or attend small, intimate gatherings which won’t be so overwhelming.
- Learn the triggers that send your kid into the downward spiral. Stay calm (I’m still working on that one! It’s freaking tough when all hell is breaking loose to remain calm hahah)
- And always, always be kind to yourself and practice forgiveness (this is easy to forget and easily one of the most important)
You’ll cry (at the drop of a hat) and laugh (poop smeared carpet is fucking funny) and become tougher than you ever imagined.
What is one thing you want other people to know about autism
This is way harder to answer than I thought it would be... An autism diagnosis is like taking a sharp left in your life path through unknown and unplanned for territory but eventually, the path starts to veer a bit back to the right. You’ll never get completely back onto the path you had envisioned before your child was born but you’ll be moving forward, creating your own road.
If you think your child may have ASD or are looking for Autism resources, here are some links you may find helpful
Find out more about Harmony and follow her along her running journey at Blind Girl Runs