Autism Is not something Owen has, yet it is not foreign to my family. My husband works with autistic children and adults so it’s not something I am completely unfamiliar with. However, I didn’t gain a true appreciation for autism and the struggles that come with it until Owen was diagnosed with sensory defensive disorder. Sensory defensive disorder affects Owen in a lot of ways. He gets overwhelmed easily by certain things such as personal space, light touch, the inability to manage his frustrations, and the inability to regulate his body temperature. If we take him somewhere that has too many lights or sounds he has a meltdown. Of course, I didn’t learn any of this the easy way. I learned it all the hard way, by having him in situations that caused his meltdowns because at the time I didn’t know any better.
Children with autism can also have sensory issues. However, sensory issues are not the only struggles they have. Dealing with Owen’s meltdowns has given me a much different perspective on the battles mothers of autistic children face. Meltdowns are hard. They are exhausting. They are challenging, and honestly, they make you question if you know what the hell you're doing. I wouldn’t even say the meltdowns are the worst part. The worst part is people's reactions. People who have no idea your child isn’t throwing a fit because their a typical two-year-old, rather, they are completely melting down because they cannot regulate the input of stimulus they are receiving. They have no control over their outbursts.
Learning & Connecting with others
One of the things I am most grateful for since starting my blog is the ability gives me to connect with people. Through my blog, I became connected with Bri. Bri is an adult with the same syndrome my son has (Beckwith-Wiedemann Syndrome). When I connected with her Owen was one year old. To be able to talk to an adult who has the same rare disease like my son is so comforting. I can see someone defy some of my deepest darkest fears that I have for my son. Connecting with her gives me hope. Bri and I met in person this past summer at a BWS conference and quickly became friends, which is why when her son was given a diagnosis of autism, I knew I wanted to do a blog with her about it.
I knew that Bri could give a first-hand account of the struggles that come with autism. A look into what a mother goes through. I decided to send her some questions with the hope that by sharing her family's story, someone may feel less alone. We want other families to know that it is okay to mourn the life you thought your child would have. The life that you pictured without their diagnosis. It is healthy and healing. Our hope is mothers will know that they are doing the best they can, and yes, you are doing more than enough!
When did you first start thinking Soren might have autism? What signs did he show?
I'd say his age was 2.5 when I accepted that he had autism, although I sensed his sensory sensitivity right away when he was born. He had a harder time breastfeeding. At the end of each day as an infant, he cried for hours and hours which a lot of people attributed to colic. I also attributed it to him being just overstimulated and needing to process all the stimuli that were overwhelming for him. As Soren grew into a young toddler, he had problems swallowing foods so we went through feeding therapy. He still only eats certain foods as his palette is just very sensitive. He also had delayed speech, so we started seeing a speech therapist when he was about 2. I didn't start thinking about autism until his speech therapist had been working with him for quite a few months and she noticed he had similarities with her other clients that had autism. His behaviors, according to our speech therapist, also aligned with some behaviors associated with autism. He is very routine and has a tough time with change and transitions. He notices when things are placed in different areas and often corrects it by placing them back to where they were original.
What avenues did you go down to try and find information about autism?
We used the government-funded Early On program - which is where we found his speech therapist. I also talked with his pediatrician and had him pre-screened at age 2, which was deemed low risk. We were referred to a food therapist from his pediatrician as well. Through Early-on we were linked with a team as he became 3 so we could have him tested educationally and get the best preschool placement for him. We had him undergo different tests with different specialists outside of our speech therapist. We were scheduled for his first IEP evaluation for March 17, 2020. Michigan closed schools on Friday, March 13th and with schools closed, Early On programming shut down as well. So, literally only a couple of days before his IEP evaluation, it was postponed indefinitely due to the COVID-19 shutdown.
What are some of the daily struggles Soren has because of autism?
Verbal communication, however, I'm thankful he's great at communicating non-verbally. He's not afraid of grabbing my hand and showing me what he needs but he cannot verbalize what it is he needs or feels. This is hard because right now I know I'll never know if someone made him feel bad, sad, or hurt him if I'm not right there with him because he cannot tell me.
What was the hardest part of receiving Soren’s autism diagnosis?
Our family had to mourn the idea of what he may be like as he grows up. I dealt with a lot of guilt and worried that I could have done something during my pregnancy that caused his autism. I worried if I was doing enough as a mom to aide him fully in his development. Mom's guilt is real. What I always try to tell myself is that I am doing plenty for my son and there's nothing I did that caused him to have autism.
How does his autism affect your families day to day life?
We work hard to make each day into a stable routine that our son can expect. We do go outside the routine here and there but do so gently. There are certain parts to the day he can always expect to be there and happen. When things happen outside our family's control, it does cause for a tougher time with redirecting and transitioning him. Babysitters don't exist. We used to try to have high school babysitters, but it never worked out well. Even having adult babysitters that he's known his whole life watch him is very tough on him. My husband and I get very little time outside our home just the two of us. We started only having people watch him after we tucked him into bed for the night. This way he didn't know we weren't home and there was someone else in the house. It sounds strange, but it was the only thing that worked for a while so we could have our own time together outside the home. The people who have been able to watch him the best have been both our sets of parents. Right now with the COVID-19 social distancing - we have no one who can help or can and all his programming has shut down.
What are you hoping the world learns from Soren’s story?
That you are not alone in your journey. That each child with autism is different. Just like those with BWS, autism is a spectrum. You are doing all you can to advocate and care for your child. Listen to your gut and your heart. You are your child's best and biggest advocate. I pushed for a food therapist because I was the ONLY one who noticed his struggle. Many people didn't agree with me and I had to push hard to get a referral for food therapy. Once in food therapy, the therapist told us that she was grateful our son was in therapy. She saw so many symptoms of silent acid reflux as well as developmental delays in terms of the way his tongue was supposed to work.
Why do you think awareness of autism is so important?
Awareness is important because it helps each family learn better techniques to help their child. It allows them to connect and bond with others out there going through a similar journey. Awareness helps teach our society more about autism and how the two can help others they may know or how to welcome and interact with those with autism.
How does Soren’s autism affect you as a mother? Can you describe your worries and fears? Your joys? Struggles?
Before my son was born, I was told I was one of the most patient and loving people by many of my friends. I also worked with children with autism as a Community Living Support for 4 years in my 20s. So, I thought I had patience down. Once Soren was born, it tested my patience and love in a way I'd never experienced before. There's something different when it's your child and you can't clock in and then clock out and have only an 8 hours shift a day. It's 24/7! Needless to say, I failed in the patience department. A lot. I was so overwhelmed when he was first born and also had post-partum anxiety. I yelled locked myself in my bedroom closet away from my child for a moment's peace. Now that he is a toddler, I had to learn that Soren does better with gentle teaching and discipline (which honestly I did better with as a child too and as an adult). I have to be very calm when disciplining or teaching him. As someone who thought I was so great at being patient....being calm while doing so with my son was way different and harder! I worry I'm not doing enough, or that I don't know enough. I'm worried I will let my son down and others will be unkind to him and he will feel bad about himself. However, there are joys with autism. On Monday, March 30, he said a full phrase! It was incredible to hear him say full words in his sweet voice. I cheered him on and he kept repeating the phrase. I feel joy anytime I see him experiencing joy and feel joy when a developmental leap happens!
What do you think would be helpful for mothers receiving an autism diagnosis for their child?
Know that it's okay to cry, feel upset, and even disappointed. You are allowed to have your own emotions about this whole diagnosis. Don't stress yourself out by googling. I have a generalized anxiety disorder and when I focus on news like this, I start to google crazy and it overwhelms me and feeds my anxiety. Find the support and resources that work best for you as a mother and for your child. Not every resource that is out there or support group for autism will be the best for what you need and that's okay. Find the places, groups, and people that are. Lastly, you are an incredible mother. You were chosen to be your child's mother for a reason and you are doing an incredible job. You also are a person outside of being a mom. It's okay to take time for yourself. It's okay to have work, a hobby, a passion outside of your child and it's also okay to have a hobby that includes your child's diagnosis!