In honor of National Autism Awareness Month, we are featuring interviews with Mothers’ who have a child on the Autism Spectrum. Todays’ interview is with Chelley Brown.
Tell us a little about yourself and your family.
I am a single mom of four ages 9 to 15. My son that struggles with spectrum issues is 11 years old. I am a full time working mom (I teach first grade) and I get lots of support from my parents.
What led up to your child’s autism diagnosis and how old were they? What were your initial thoughts and feelings?
When I got pregnant with Jayden, I was on the patch. I kept using it because I didn’t know I was pregnant. When I found out, the OB sent me for an ultrasound at the hospital. They told me that they could see that the sac was not developing normally and that to prepare for a miscarriage. I was about 8 weeks. He was born right on time at 39 weeks. My mom noticed some oddities in Jayden when he was about 6 months old. I had been a stay at home mom with my first two children and allowed my guilt from working and struggling to breastfeed for the first time with Jayden, get in the way of fully noticing that these issues were not related.
At his one year checkup, the pediatrician began to agree with my mom about his development. He was not talking, he wasn’t interested in being social with people, he did not like to be held, and he would sit and stare off all day into nothing. The doctor ordered a bunch of tests. Shortly after, I left my marriage and my parents and moved out of state. This slowed down the diagnosis portion because I had to begin again in a new place. I was referred to an early intervention program and it was a game changer! I can’t speak enough about these programs. Once we got the initial evaluation, we went through a year and a half of testing, consults, and therapies.
I went back to work but luckily, I had a great support system. A friend and neighbor of mine agreed to be my nanny, taking care of Jayden and small household chores for a small fee. He had a support team through the intervention program which included 3 people that came to my apartment weekly to work with him. This was probably the toughest bit for me. Week after week people came to be with us for hours, putting us under a microscope and I just felt helpless but also felt like I couldn’t dare fall apart in front of them or I’d be blamed for all of it. The worst part was that my son was a year old and I had never heard him say “Mommy”. Even now, just bringing up the memory of that pain grips my heart and brings tears I thought were long gone. After about 6 months of “treatment”, they had narrowed it down to a general delay that he would outgrow or autism. I preferred the delay. I was terrified of autism because so much of it was unknown. However, I was also relieved because I could finally put a name to what I was facing. Later on, doctors determined that he has Asperger’s.
What does autism look like for your child? What does a typical day or week look like for your child? (School, Therapy, Routines, etc.)
When Jayden was younger, he couldn’t talk or cope with many things. So he screamed. The speech therapist would come three times a week and spend time showing the nanny, myself, my boyfriend and his mom how to engage Jayden to encourage him to learn. This included not giving in to the raging screaming which had been known to last for upwards of 2 hours. He would grow frustrated when we didn’t understand his baby babble. He was almost 3 and had a vocabulary of about 7 words.
He had an occupational therapist come in once a week to help with his sensory issues. She is the one who figured out that we needed to use plastic utensils to avoid a meltdown, he had an issue with the metal ones. She also showed us how to give him a bath and which clothes to use because he was so sensitive. Her little tweaks brought a world of change to our hectic lives and I often wondered how she knew my son better than I and of course, the work guilt came back. Slowly, I learned to read his cues with her help but it took forever for the guilt to stop.
Now that he is older, a typical week is much easier. I leave for work before he is out of bed (awake but not up) and he gets dressed on his own. His brother waits for the bus that picks him up at the door and he goes to a horrible school because it’s the only place nearby that offers any kind of support for the educational plan he has. He hates it which makes me very unhappy with it. He gets his therapy at school. It includes speech (yes, still) and social-emotional therapy with a counselor. He doesn’t need occupational therapy anymore because he can tell us now what sensitivities he is having and we can address them. After school, I get him off the bus and he does homework on his own except the occasional project. After that, it is just maintaining his stress until his nighttime routine.
On Thursdays, his friend from church (a young lady who has been a huge blessing to us) picks him up and takes him with her while she serves. He absolutely loves it. On Sundays, we go to church. It’s a big church which means loud music and lots of people. It’s a struggle for him at times. Sometimes we need headphones, sometimes he has to stay outside until they turn the lights down. The friend from church knows all these things and she stays near him to assist because, during that time, I lead a small group. She is amazing.
During his downtime, he looks up and memorizes all the Godzilla and dinosaur facts that were ever known. He can identify the family (and sometimes the exact dinosaur) from fossils that look like ultrasound photos to me. He wants to be one when he grows up. Yes, I know. No, I don’t have the heart to tell him he can’t anymore. He still has meltdowns, he still struggles with social skills and awareness. But he is alive when I was told he wouldn’t be. He can speak and recite all these facts when I worried that I would never be able to talk to him. I guess a typical week is never really typical.
Can you share one of the biggest challenges you, your child, or family has faced in regards to autism? Can you also share one of the biggest victories?
One of the really big challenges is that the other children in the family take a backseat. They feel left out, undervalued and unloved. It is difficult at some stages of development for them to understand that one child can need so much. It takes a toll. Furthermore, as a Single Mother, I constantly feel like I am juggling who’s turn it is to have my attention. They outnumber me so it’s like a rotation almost. Oh, it’s this kid’s turn this week, I’ll get to you in two weeks. It’s really hard.
As for Jayden, there are weeks when I can almost forget he has Autism. It is a combination of everything working that week and being used to doing the things we normally do so I don’t think about it. But just when I get in the groove, Autism smacks me in the face. Here’s an example. About a year and a half ago, I lost my job to downsizing. The following week, I was able to start a new one. It was my first day and I didn’t want to be late. Jayden’s bus was late so I told him I needed to go but that his brother would wait for him. If the bus wasn’t there in ten minutes call his Papa. I took a paper and wrote the number for him and handed him the phone. When he didn’t take it, I looked over at him and he was frozen, eyes wide like a deer in headlights. My 10-year-old (at that time) was terrified because I had given him instructions that he could not process. He didn’t know how to dial a number or what to do after that. I had forgotten that six years prior, we had to teach him to smile. I had never taught him what to do with a phone. I got a huge Autism slap that day.
As far as victories go, my faith teaches me there is victory all around me so now that I live out this relationship with Christ daily, there is triumph daily. Did we wake up? Yes! Everything else? Victory! I know that Jesus has overcome the world and everything in it, including any struggle we may face with Autism. I try my best to praise during the hard times for the hope that I have in Christ. It isn’t always easy but it is always right and it always works.
What is one thing you wished more people understood about autism? How can they be more supportive?
Help us with the other kids, please!!! That’s probably the top one for single moms. Changing plans for a family living with autism is super challenging. I understand this is sometimes unavoidable so simply being aware of that can help at times. Also, the mom guilt is real. Autism mom guilt is supersensory real. It helps when people don’t add to it, real or imagined, it hurts big time and isolates the family further.
Do you have any recommendations for resources that have been helpful to you, your child, and your family? (Support groups, Educational Websites, Books, etc.)
The Bible. Have a New Kid by Friday by Dr. Kevin Laman. This is not only a book but if you have Rightnow Media it is on there as well. It is not geared towards autism but the emphasis on consistency is key, and it also helps the other kids who are in the household but not autistic. Early Intervention Coalition if the child is younger than 3 – this is crucial. If the family is in a supportive church environment, that’s always a great resource. They can lift up a family any time of day or night just on their knees. That kind of resource is invaluable.
Any last thoughts or words of encouragement for families whose child is on the autism spectrum or has a special need?
Don’t give up. I know it’s exhausting sometimes, I know it hurts, I know its hard. We have these children for a reason. We are already equipped to handle this so let’s just make the best of it. There are times autism really shines and gives you a whole new outlook on some super bland things. Look for those moments. Cherish them, remember them so you can pass them along to the next family who is in need of those very special words that will bring hope and joy.