The Struggles From the Inside & Outside: An interview with Crystal M.
April is Autism Awareness Month, and our DEI Committee took the opportunity to feature one of our Logistics Specialist at Loyal Source, Crystal M. They recently sat down with Crystal to discuss being a parent to a child on the autism spectrum. She opened up about the the struggles from the inside and outside she and her son face, and how they cope with these struggles together.
First off, how are you doing?
I am well thank you for asking. I am currently mentally in a good space awaiting for our new baby’s arrival and anticipating how E will take on his new role of big brother.
What were some of the programs and support that you used to help E grow and develop?
Currently I have E attending speech and 0ccupational therapy. This helps him with speech and sensory issues. Having a strong collaboration and communication with his therapists is essential to his success. Art is also something he enjoys and helps with his expression.
Creating a daily routine allows him to thrive. Everyday when he wakes up he already knows what he needs to do next, brush teeth, bath time, breakfast, reading time, play time etc. I have created a clock that I divided up in sections with pictures and colored them. Each section represents what activity it is time for. For example, a book for reading time, a sun and tree for outside time, and a bed for nap and bedtime.
Consistency is a key role in his development.
What has been the biggest obstacle you’ve had to overcome in E’s life?
Communication will always be my biggest obstacle. Especially since he is so young. I worry when it’s time for him to go to school or even his adulthood. My biggest concern as a parent is to make sure he is able to communicate one way or another.
You see and hear about so many tragedies that have happened with non-verbal, autistic, and deaf individuals all due to them not being understood since they do not communicate how society defines as normal communication. (Verbal)
The second biggest obstacle is learning his mannerisms and educating my family about his way of expression. Trying to make them understand that what may seem as a tantrum, anger or misbehavior is really E being overstimulated, experiencing sensory overload and not having the capability of expressing himself how someone non-divergent would.
How do you manage parenting your other child and your new bundle on the way while still providing additional support to E?
I try my best to plan and include all the family in activities that we can do together. This allows everyone to understand, witness and learn how to handle and cope with E when he is dealing with his emotions or communicating.
I also create mommy and me dates with each of the kids. For example, I will plan a mommy and me movie date, or Starbucks date just my 11-year-old and I. My husband does the same. We also do these individually with both kiddos. This allows us one on one time with each of the kids so that no one feels unheard or left out.
We also have our “3-thing rule” during dinner time each evening. Every evening we ask what was one good thing about your day, what was one not so favorite, and what how was your day.
What were some of the things you noticed in E that prompted you to have him screened?
During playtime I would notice that he would line up his toys in a particular order. When his brother would try to play with him, E would become upset if his brother took apart his line-up order.
Another was when he would not respond to his name. As he got older I would say around the 1.5 year mark, I noticed that he would not verbally speak compared to others of his age. He would seem frustrated when he was trying to communicate something to me.
Before screening him, I took it upon myself to teach him basic sign language. Once he started learning this form of communication, I noticed his behavior was improved. He wouldn’t become as frustrated or upset as he would in the beginning.
What is your favorite part about being E’s Mom?
Being his number one support system, and that goes for all of my children. I take pride in knowing that I was chosen to guide them, pave the way for them and support them in anything and everything they do.
In particular to E, my favorite part is learning something new every day. Autism has granted both of us the opportunity to learn new ways of coping with our emotions, new ways of communicating, and spreading awareness to others.
How does E communicate with you?
Our main forms of communication are both verbally and sign language. We have taught him how to sign for basic needs such as eat, play, drink, bath, sleep, please, more etc. E is able to understand verbal dialect, we utilize sign language for him to communicate with us.
When communicating with him we use a combination of both. As we are speaking to him, we are also performing sign in order for him to make that connection between the word and sign. He is starting to mimic this as well. For example, he would do the sign for more or eat as he says the word more or eat.
What can others/I do to help you?
Become open minded and educate yourself and others to become aware of not only autism but of the entire neuro divergent community. Don’t be so quickly to judge or label someone as acting out, crazy, or throwing a tantrum.
Not too long ago I noticed a mom with her autistic daughter at the airport gate. We were waiting to board our flight and her daughter was experiencing an overstimulation episode. There was so much noise around that she was crying uncontrollably. You can tell the mom was overwhelmed to the point where she looked like she wanted to cry too.
Everyone was looking at her, some were shaking their heads back and forth while others rolled their eyes. One even made a comment like “she needs to control that girl because her crying for this entire flight is not it.”
I went up to mom, come to find out she just recently learned about her 5 year old daughters diagnosis. I had a pair of E’s sensory headphones. After talking to the mom, I advised her that the headphones might help cancel out loud noises that might be bothering or scaring her. I showed her some breathing exercises I learned that helped calm down E when he was experiencing an episode. Her daughter calmed down and you can tell the relief mom had.
It was so sad because I can relate to her. The emotions that we feel at that moment have more to do with not wanting to upset, burden or inconvenient outsiders than they have to do with dealing with our child’s actual episode.
We worry as moms that we are going to be judged for bad parenting.
I feel that currently we have a stigmatism that what is not considered as “normal” in our society is labeled as weird or different. In truth we are all different. Some of the most intelligent scientists, celebrities, friends, and family are autistic or neuro divergent.
How can I explain autism to my children?
I would start by first explaining to them that autism is viewing the world in a different perspective than they do.
When I first explained to my 11 year old E’s diagnosis I shared the strengths, abilities, and interests of autistic individuals. I explained E’s strengths of organization, matching things, recognizing colors and sign language. I then shared his sensitivity to verbal communication, difficulties with social skills, and his beginning adherence to routine, playing with others, eating, and expression.
Making sure that autism is not viewed in a negative light was every important to me when explaining this to my oldest. I advised patience is key. And, like E, we are all learning something new every day. I emphasized that E learns differently just like everyone else learns in a unique way.
What advice would you give other parents?
Breathe, cry, go through your emotions. It is normal and okay. You are human! Ask for help when you need it. Join Facebook groups the amount of support from parents is overwhelmingly incredible. When I started joining these groups I started to feel less guilty and stopped being so hard on myself thinking I was failing as a parent. The suggestions, advice that other parents had were amazing. I learned coping mechanisms not only for myself but for E too.
We want to thank Crystal and our DEI Committee for taking the time to conduct this interview.
At Loyal Source we continue to raise awareness for Autism not only in April, but year round. Our biggest fundraiser of the year, Derby Day 4 Autism takes place the first weekend in May and raises money for UCF CARD – Center for Autism and Related Disabilities through their supporting nonprofit PALS -Providing Autism Links & Support. You can learn more about PALS in our blog interview with Judee Samuels, from PALS and UCF CARD.