Autism Awareness and the Mother’s Perspective
April is World Autism Month!
Last week, Ashley, OTA, shared with us the role of Occupational Therapy in the lives of children who have Autism and this week we have another great way to celebrate Autism Awareness Month!
We have asked 10 questions to four different people, who either have a family member or work with a child on the Autism Spectrum. We hope the insights from a sister, mother, ABA therapist, and Au Pair give a unique perspective on what their experiences are loving and working with a child who has ASD.
It is said, “if you meet one person with autism, you have met one person with autism,” and we believe this is so true!
What is Autism?
Autism spectrum disorder (ASD) refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. Since Autism is a spectrum disorder each individual has their own set of strengths and challenges, they can range from high functioning to severely challenged. Some may require significant assistance while others may be more independent and in some cases living on their own completely.
Did you know?
AUTISM AND SGF
Two of the families gifted by Specially Gifted Foundation have a child who is on the Autism Spectrum. Read the Wilson Family’s Story or Malautea Family’s Story to hear about their journey with the sweet boys Waylon and Noah.
Additionally, a Speech-Language Pathologist and Occupational Therapy Assistant offer great resources in our Facebook Group, Specially Gifted Parent Resource Community, every third Thursday of the month. Currently, there are two videos that cover Early Signs of Autism and therapy services offered by the school systems in Georgia. Please join and invite others who could benefit from asking questions to these knowledgeable professionals!
Read more about Therapy Thursday here.
AUTISM AWARENESS AND THE mother'S PERSPECTIVE
1. What is your child’s name and describe his personality to us?
He is the sweetest, most loveable little boy. He loves to be outside in a big open space just to run and “be free”. He laughs like no other. He has the cutest belly laugh. He loves to play, especially swing.
2. What were some of the things you noticed that prompted you to have him screened?
I knew he wasn’t meeting the typical milestones for children his age. His pediatrician spoke with us about getting him Speech Therapy because he wasn’t really talking/babbling. She also requested Occupational Therapy. It really wasn’t until I spoke with a former coworker of mine. I had two coworkers that helped. One homeschooled her children so when I noticed Waylon wasn’t meeting milestones I asked if she knew any good educational things online to help. She told me to go speak with another Coworker. The other coworker had noticed when she took Waylon’s Santa pictures that he showed signs of autism. This particular coworker has two children with autism. One was an adult at this time the other still in elementary school. So when I went back to work I found her and told her the message was relayed to me to see her if I had questions about Waylon. She then told me about her children and asked questions like: Does he like watching the ceiling fan? Does he not really give you eye contact? Does he like to line up things? I can’t remember all the questions. I answered yes to all but lining things up. At that time Waylon hadn’t started lining things up. As I answered yes to each question I began to cry. I had no idea what Autism was/is nor had I known anyone with it. She told me that it was ok to cry but to not think his life was over. It wasn’t life threatening he would just need accommodations and therapy.
3. How old was he when diagnosed? What was your response to the diagnosis?
Waylon was 2 years and 2 months when we got the diagnosis. I knew in my heart this would be the diagnosis. Though I held out hope I was wrong.
From the moment the pediatrician mentioned getting him tested until the day he was diagnosed I felt like I was on this journey alone. Everyone made me feel like I wanted my Waylon to have this diagnosis. They kept telling me give him time, he will talk when he is ready, he will do this or that when he is ready.
So, when the day came and I drove to the clinic in Woodstock, just me and Waylon, I held tight to hope. Hoping that maybe just maybe I was overreacting. We spent about an hour for the whole evaluation. The doctor came back in to tell me, yes Waylon was being diagnosed with Autism.
As my mind is swirling as to what to do next, how to help him, how to fix it, how to “cure” it, the doctor, still talking, saying things as to where to go to find the next step, what therapy he is going to need and what therapy would be the best for him. She suggested ABA and then told me that she provides it in a clinic there, who to call to walk me through insurance and that he would qualify for SSI disability.
I was still trying to wrap my brain around his diagnosis and the fact I financially couldn’t afford to take him to Woodstock daily because she said he would need as much ABA that insurance would pay for. I remember when I finally left. I put him in the car, climbed into the driver seat. I remember calling my husband crying telling him that Autism was the diagnosis.
4. What were some of the programs and supports that you used to help him grow and develop? How do you handle being his advocate?
The Dr. that diagnosed him told me to go to Autism Speaks and apply for the “First 100 Days” folder. It was a folder walking you through your first 100 days after the autism diagnosis. It suggested self help books, therapy books, etc. I lean strongly on the doctors, therapist, fellow parents for support.
After Waylon was diagnosed I learned that I had a friend who has a high functioning child. I also had another friend who has a child that is older but similar to Waylon on the spectrum. I have actually met that child many many years ago and knew there was a disability there but never asked for the diagnosis.
It actually took me until December 2018 to really grasp the “advocate” part. I was always scared that if I said no in a therapy session, or refused to allow the therapist to do what they went to school to do no matter if I felt it was harming Waylon or if I saw Waylon be so upset from something he would be physically sick and terrified. I allowed an OT to strap him in a chair (before he was even diagnosed) for a session.The whole time he was crying so hard he was gagging. The whole time she kept telling me he was fine because she wasn’t physically harming him. I did it one or two sessions and then told her we wouldn’t need her services. I could see with my own eyes that yes she wasn’t physically harming him but I couldn’t handle watching my baby(because he was still a baby) cry like that when the speech therapist never needed to strap him into a chair to keep him in the area.
Early 2018 I did it again. This time he had aged out of the other speech therapy and needed another therapist. So I found one recommended by his pediatrician. The first visit the therapist took us back showed me the room and the little “bamboo” chair she uses. She explained to me that sometimes she would hook the belt around it if they get to flopping around so they wouldn’t fall out. She made it out as a “security” thing. Waylon would visit her twice a week for a month. I began noticing he would start to whine as we pulled into the parking lot. Then it went to crying when we went into the building. When she would bring him out at the end of visits she would tell me how he did and would say, “Oh I had to buckle him in.”
After every visit he would come out of her tiny room red eyed and red faced from crying so much. The very last visit we did, The therapist came to the door to get him and he immediately started crying. She came and “half dragged” him to the door. As she was putting in the codes to go back he turned and looked at me with a look that was like “Mama please, please help me, please don’t make me go back there.”
I remember calling my husband and crying to him about it, telling him how I don’t want to make Waylon do this therapy anymore that he couldn’t be learning anything if he is terrified and crying.
So I called and told them he wouldn’t be back.
That was the next to the last incident that I trusted the “professionals”. He got sick with flu and pneumonia December 2018. I took him to his regular pediatrician on a Thursday after the urgent care diagnosed him with the flu on Tuesday. His pediatrician just said he was a little dehydrated from pushing fluids and if he isn’t better to call her office when it opens the next day.. That week up till that Friday was a nightmare. Friday morning around 3am I couldn’t take seeing Waylon so sick. I once again asked family members their opinion, if I was overreacting. One told me to take him to the ER if I felt like he was worse. So, I did and by 9am we were being admitted to ICU and Waylon spent 3 days in Rome, and was airlifted on the 4th day to Scottish Rite in Atlanta where he spent the next 2 and a half weeks on a BiPAP ( a noninvasive ventilator). He had a chest tube put in to drain fluid off his lungs for 3 days.
Long story(sorry) short that regular pediatrician was the last time I didn’t speak for my son. It is very scary to watch your child almost die because you were worried if someone thought you were over reacting.
5. What was the biggest obstacle you've overcome in his life?
I believe my biggest obstacle is, and I know this sounds funny but patience.
Out of the therapies, the life threatening time in the hospital, school, the covid-19 pandemic patience is my biggest obstacle.
I haven’t cleared that obstacle yet but I am trying with each day.
6. What is the biggest obstacle he has overcome in his life?
I don’t think he has obstacles.
He has hills or mountains but he tries every day at climbing them.
I say that, because since we have started ABA(we started in Feb 2021) He has made so much progress. His eye contact is getting so much better. His communication has improved a lot. His meltdowns from frustration aren’t as intense.
It’s been two months and progress is showing so much that doctors, therapists, and teachers are noticing.
7. How did you manage parenting your other children while still providing additional support for him?
I have two other children who are my bonus children (legally step children but I don’t like that term). When I got pregnant I worried at how close they would be with Waylon just because they don’t live with us full time and the age gap is there. The oldest is now 18 and graduating High school and the youngest is turning 15 next month and in high school.
When Waylon got his diagnosis I was at a loss at how to explain to them and teach them when I didn’t understand autism myself. So I did a lot of research. Reached out to my other parents. Joined a lot of Facebook groups and thought,
“They are smart, they love their brother and we will take it day by day.”
I choose to answer any question that I have and I try my best to find examples of what I am explaining. The past couple years hasn’t been as hard because my oldest had a classmate that is on the lower end of the spectrum and has characteristics like Waylon. I would just explain to him and his brother “you understand how his brain is thinking, he sees the world the same as Waylon. He is just older and verbal.”
Waylon adores his older brothers.
They don’t show him much difference as he is a child with autism, that is non verbal. They still pick at him and on him. They are amused at his tantrums when he gets frustrated when they move a toy he has lined up or if he wants something a certain way. I have to get on to them sometimes and remind them “hey that’s actually mean”. They are always trying to help when he starts melting down and we don’t know why or they will share their phones with him if we are in the car and his tablet wont work.
They are truly a blessing and I am so thankful God chose us to be a family.
I also learned that the age gap doesn’t really matter when it comes to siblings.
8. What advice would you offer to parents who have recently become a part of the ASD club?
Take a breath.
It’s just a diagnosis.
It just means you are about to learn to see the world from a different point of view than you are used to.
Never be scared to ask for help or to ask questions.
Trust your gut.
Always choose what’s best for your child no matter what relationships it might end.
Take time to grieve the diagnosis, there is nothing wrong with taking time to be mad at the world. Just know when to let it go and move on. The diagnosis is just a label, doesn’t mean that’s all they are. Our child’s progress may always be in little steps but that is ok too because it’s still progress.
God chose us to be a parent to a child with Autism because we are strong no matter if we feel like it or not.
Last, be thankful.
9. What is your favorite part about being his parent?
Getting to love him.
Knowing God blessed me to be his mom. Hearing him laugh has to be my absolute favorite thing about being his mom.
No matter the long nights or how exhausted I am when he laughs, like belly laughs, I forget all the hard parts of autism.
10. What would you like to tell the world about Autism?
I would love for more people to learn about it. To learn that not every two children are going to be alike. (I think that is right) Autism is a HUGE spectrum.
Just because a child can talk or play sports does not mean they don’t have autism.
Just because it isn’t “noticeable” doesn’t mean they don’t have autism.
I would love for there to be more acceptance.
I want autism no matter where on the spectrum to be so normalized that you can sit in the middle of two people that have autism. One being higher function the other being extremely low functioning and it wouldn’t matter. It wouldn’t make you turn your head in the store if you heard a low functioning child having a meltdown because it can’t mentally process all the sounds or light.
I would love for people with autism not to be judged by what they can’t do but what they can do.
Don’t put them in a box, don’t underestimate them. If the sky’s the limit for a person without Autism, then the sky’s the limit for someone with autism.
In conclusion, feel free to add any additional information or comments.
I want to thank you for wanting to share my story. I always get asked about Waylon’s story, Waylon’s journey. It is nice to share my journey. Though I shed many tears putting my experience in words to be shared. (i’m always emotional) lol
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