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 Andrea A.
Tell us a little about yourself and your family.
My name is Andrea, I’m a psychologist and I moved to the United States 6 years ago. I’ve been married for 6 years now to my husband Henry and we have a wonderful little rascal name Mattias. He is 4 years old. We are the typical Latino family living in South Florida. We are a Christian family who loves to serve our community in any way we can. When we are not working or serving, we love to be just the 3 of us in our home, or go to the beach anytime we can. Having all my family abroad makes everything harder but this little family of ours is exactly what my soul needs. Besides being outdoors with my family I love to read, music and photography. Teaching is my passion.
What led up to your child’s autism diagnosis and how old were they? What were your initial thoughts and feelings?
Being a psychologist myself and my mom being an autism specialist since 1983, was like a no-brainer. We started seeing little hints here and there when he was around 6 months old, especially in the eye contact department. When we felt “ready” to go through an evaluation process, Mattias was around a year and 10 months, almost 2 years old.
I think nothing in this world prepares you for any diagnoses that imply your own flesh and blood, let alone your only son. Although all the signs were there, and I talked to myself about it, deep inside I was hoping and praying for a very different outcome, especially because his pediatrician at the time, was completely oblivious about his condition. He kept telling us that our son was completely normal and we were just wasting our time. Oh! I prayed hard he was right.
When the team who evaluated Mattias broke the news to us I felt numb, I was in shock I guess. My mind was racing 1000 miles per hour but honestly, I wasn’t thinking. I do remember the feeling of loss, like right there, everything I dreamed and hoped for my son, was over and gone now. Saying that I was extremely sad and depressed is an understatement.
“I felt hurt, angry at God, and disappointed in myself and my own body.”
I felt guilty trying to remember every day of my pregnancy and childbirth, looking for that “thing” I did wrong: “Was it something that I ate?”, “Was it my morning sickness medicine?”, “Did I expose myself every time I had to get gas?” and well, the list goes on and on. I also remember feeling ashamed. Feeling ashamed with my husband, as my duty as a wife, was providing him with a healthy son, and I ‘failed’ him. It was a hard weekend, I couldn’t get back to work and spent most of my weekend laying in bed with zero desires of doing anything.
I forgot to mention that my 29th birthday was just a day before his diagnosis. My husband had planned a surprise birthday party for me, and for the 1st time in 2 days I had to get up, get ready and pretend nothing was happening. It’s crazy how the simplest things like getting in the shower and applying make-up, become daunting tasks when you are depressed. It took me a few days to ‘digest’ the news and our new reality, but I knew that the longer I stayed in that dark places, the longer it would take for me to get out.
This is when I truly understood the meaning of ‘mother’s love’ when I decided to bounce back for the sake of my son. It was one of the hardest things I had to face, but a mother does anything for her child. Laying in bed crying won’t fix my son so I knew I had to make an effort to get up, dry the tears and start working towards a ‘treatment’ plan like special education, getting his therapies, etc. etc.
What does autism look like for your child? What does a typical day or week look like for your child? (School, Therapy, Routines, etc.)
Thank God, my son’s autism is very mild and he is considered very high function. He is a sweet and loving 4-year-old with the same attitude, challenges, likes and dislikes of any 4-year-old. He loves to be around strangers and always likes to say hi to everyone. He doesn’t get bothered by noises, changes in lights, touch or changes in his environment. He is being subjected to the same standards as any other typical kid.
We acknowledge his condition but he receives the same treatment. We expose him to everything we know can bother him so that he can develop strategies on how to handle those situations. He is extremely resilient and learns fast too. He does attend a special need class because we know he still needs the extra help. He also attends therapy during school time. His routine is pretty much getting ready for school and he’s there from 7:50 am to 2 pm. After that, he goes to a nanny until 5 pm when I’m off from work. Because he received all his therapies on a regular school schedule, our routine is very typical, not different from any other families.
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?
I believe this world is still not 100% ready for people with special needs and there is still a long way to go to have an inclusive world. I also believe there is a lot of ignorance around autism especially when people still believe that it’s linked to vaccines. My mom and I come from a third world country where vaccines are not mandatory. Many of my mom’s autistic students were not vaccinated (at least 67% of them) but people still insist. Thank God that we live in the States and this is one of the few countries where you can tell that people are tr toying help our special need community. We get special passes when we go to Disney and other kids attractions to help make our experience more pleasant and less challenging. I think our biggest victory is when I have the chance to educate someone about autism.
What is one thing you wished more people understood about autism? How can they be more supportive?
Autism is not a disease, it is a condition. Autism can’t be cured just for the simple fact that our kids are not sick. Hence, your kid can’t get autism just because he played with mine. As parents, we want to be treated normal, sometimes people don’t know how to act around us, and we just want to be treated normal.
Some people say things from a good place, but it can be extremely annoying…things like:
“Oh, but he looks so normal!”
Well, he looks so normal because he IS normal, maybe you are referring with being “typical”. Autism is a mental condition, so on the outside, all autistic kids look normal. My son physiologically is 100% healthy and normal.
“Oh, but my child does the same.”
I know you are trying to make us feel better, but we don’t need it. My child has a diagnosed condition, what your child does is just a behavior. I know kids can be shy just like autistic kids or have certain behaviors they can share with autistic kids but it’s not the same. Trust me, I wish my son’s condition was just something temporary, but it’s not and we are ok with it.
“Maybe it’s what you are cooking for him, have you tried to go gluten-free?”
I know (trust me) that there are certain things in our food that can lead to changes in typical children’s behavior but autism is different. It’s true you can improve their quality of life by improving their meals but it won’t take the autism away.
“Well, maybe you will think twice before getting another child vaccinated”
I don’t even want to go there.
And the list goes on and on. The majority of these expressions are not bad intended but it can be annoying rather than soothing or comforting. What can you do?
- 98% of us parents feel more than ok to answer your questions and curiosity about our child. Education is the key to inclusivity.
- Don’t assume for us: “Oh I didn’t invite you and your child because it’s a noisy place and I thought he won’t like it.” Typical parents tend to ostracize special needs parents from simple events such as a birthday party, thinking you are doing us a favor. No! Big mistake!!! Let US make that decision. Send the card, I’m the one who can actually assess the situation and I’m the one who can determine if my child can attend or not. Once again, we just want to be treated normal.
- Talk to your children about special needs and let them be around your kids. 100% of the special needs spectrum is a condition, not a disease that is contagious. Your child won’t get Down syndrome or autism just for playing with one, NOR will they act or behave like our kids either. Kids can be very emphatic and they can pick up when things are not ok. Educate them.
- Don’t judge: Parenting is hard for sure, but for us, it can be even more difficult. We might not be the pinterest moms but be assure we are trying the best
- Don’t feel sorry: We get it, it sucks! Trust me! We know! But it is what it is. I get the “You are so strong and courageous, I wouldn’t be able to do it” ALL THE TIME. At this point, it’s almost annoying but is well intended. Well, I didn’t believe I could either but when life puts you in my situation you honestly have no other choice but to pull through.
Do you have any recommendations for resources that have been helpful to you, your child, and your family? (Support groups, Educational Websites, Books, etc.)
Ummmm…contact any local/government resource. Special needs can be a very expensive journey and getting government support can help tons. I haven’t had to pay the 1st therapy for my son since his diagnosis and that is a huge blessing. Trust me! You don’t need the financial burden on top of everything that is going on.
Any last thoughts or words of encouragement for families whose child is on the autism spectrum or has a special need?
Just keep swimming…
Andrea thank you so much for sharing your family’s journey and advice with the Sincerely, Mrs. Mommy Family!
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