The battle against Autism has been raging ever since the first serious diagnosis in 1943. The silent yet mentally deadly disorder has been known to permanently damage the nervous system, impairing the ability to interact and communicate. In today's society, different stories have been emerging from different families fighting the disorder. More than 1 in 68 children are affected with the disorder and adults and the elderly also have to face the diagnosis. Each story differs due to (in some cases) the inability to have access to proper medication or therapy, financial aid, or simply just the mental shock and struggle that comes with it.
The fight against autism will continue to wage on, but one of the best ways to defeat autism is to educate oneself about the disorder itself and to spread awareness about it. Children's author and novelist Coach Elaine Hall quoted:
"It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village."
But this fight will not be independent. One child with autism cannot expect to fight independently and expect improvement. Improvement is never by mere chance, instead, it is the result of multiple forces working together. Choosing the way we look at this situation puts us in control of the battle, and becomes the result of multiple hands working together.
In honor of Autism Awareness month, I talked with a nine-year-old young lady named Thomais Moshopoulos along with her mother Yadira. At 30 months old autism became a part of Thomais' life, and later dyslexia became one too. The duo is now active participants in autism awareness events, and they have continued to spread awareness and empowering girls with autism. The Teen Magazine has now had the chance to interview Thomais' mother Yadira about their life with a child with autism and dyslexia, and how they have fought and been involved in this fight against autism.
How would you describe autism and dyslexia? What would you like our readers to know about it?
Autism has the capability to become a silent destroyer in our homes. I say this because if a couple is not in unison, dilemmas have not been solved, emotions are not expressed, finances are not stable. And if one of the partners still has the need to live life as a single person and autism creeps in silently, quietly, stealthy in their home; it takes a big miracle and huge effort to keep the family unit together. Autism disrupts the day-to-day, the minute by minute in a home. When the worst of the symptoms or behaviors of autism become a reality in your child, there is no you as a person, there is no you as a parent, there is no you as a partner in a marriage. Life becomes your child if you decide this. Autism can limit life if you allow it to do so. I have seen how autism has limited the life of many. On the other hand, as we are witnessing, autism is just a word in many cases and has opened the doors for many to have jobs and to create a quality of life in their existence.
Dyslexia adds a major disruption to the learning process whether it is academic or day-to-day activities. A person with dyslexia will not know how to respond to the rhythm of a classroom because they cannot follow a reading, they cannot read out loud, they cannot read signs, and in many instances, behaviors and interruptions are used to compensate for not being able to read. Task avoidance is another tactic to hide the fact a person cannot read. If a teacher is not trained to recognize the signs of dyslexia, this student can be wrongly labeled as a behavior case or another of the many labels that presently exist and the student will go to detention, the student will be bullied, the student will be mocked. The big problem is the student will not be serviced adequately by the school system and it all begins from the fact that laws and funds are not in place demanding teachers are trained to recognize the signs of dyslexia. This is a huge problem throughout the United States, not only in Florida.
Also, dyslexia can become a powerhouse in an individual who receives training, who receives therapies, who has in place specific supports that allow for the creation of an incredibly accomplished person. But most of the time this person did go through a very challenging stage; a period of time when they wondered who they were, what they were, and why everything was so difficult.
(For mother Yadira) What was your initial reaction when you learned your daughter had autism? What advice do you have for parents who are coping with the diagnosis?
My initial reaction was a relief because I knew. I got confirmation that explained why my daughter, in a period of two months, changed drastically. From my child who was learning three languages, repeating everything, who had eye contact, who smiled, who interacted with other kids, who liked to play at playgrounds. What made the process even more manageable was that I was told by two developmental pediatricians that autism is medical; you address the medical issues and your child will come back.
I read a lot. I interacted with many parents. I got online and found countless groups supporting the message I had just received (which was a very positive one). I said, "I'm going to fight this." There is a reason why my daughter all of a sudden stopped being a child and became a vegetable, an unplugged individual who couldn't think, who could not speak, who could not say "I'm in pain" or "good morning" or "I am happy". All she did was scream, sleep less than 5 hours for 3 years, and be afraid of anything that was to happen in our day today.
Any parent who receives the message completely different from the one above needs to erase those words and must go see another specialist who will provide scientifically proven methods, science that reaffirms quality of life can be achieved by addressing health and the medical issues many of our children face. A diagnosis cannot be seen as a death sentence. We are living in the year 2018. There is so much information available. The fact is you need to go get it because no one is going to do this for you. You may say, "but I didn't sign up for this, I just want to be a parent!" However, the reality is that you are going to be a parent and the parent of a child that has specific challenging needs who bottom line, must be loved.
How have you and your family's life changed? In what ways have you learned to cope with the hardships that come with both autism and dyslexia?
I did what I wanted when I wanted. Prior to becoming a parent, I had experienced the good and the ugly life can offer. It was the best training ever. Why? Because I had been me. I had survived and enjoyed so many situations having lived in 6 countries and traveled to another 27. My child was the greatest present I had ever received. I always wanted to be a mom and it happened. I was ready to embrace everything motherhood offers without regrets. So, when my child's regression was taking place and she was presenting obvious signs of autism, my reaction was: OK, this is not right, this is not normal. Let's read. The internet and social media opened the doors to a plethora of realities and I paid attention to the positive outcomes. Our family suffered immensely. We, the parents, were not strong as a couple. I veered all my attention and concern and energy towards my daughter. I did not pay attention to the marriage, my husband, or myself. For me, it was the logical move. As a family, that was a choice that brought about drastic changes. I abandoned the marriage, took our child from Greece and came to the U.S, seeking better services and therapies. It was very painful for all. Again, I could only do what was best for my child.
So, coping with hardships in my world means staying positive, facing the struggles, and realizing that there is always a solution for everything. it is not always easy. With autism plus dyslexia, it is very difficult but it is not impossible. Presently, my daughter has a very healthy and positive relationship with her dad. We all have worked very hard at it. She is capable of being a participant in this process. We are working on putting aside the pain and hardship. Her future is our priority and she needs both of us.
What advice do you have for families out there struggling with this battle against autism?
1. Go through the morning, punch a wall or stomp your feet. Stop mourning!
2. Talk to others who are going through the same. Do an initial comparison of what your child can or cannot do.
3. Read a lot, so much research is available. It takes time, so you must have to make the time. The more you read, the easier it can be to decided which path to follow.
4. Ask yourself: Do I love my child? Why do I love my child? How can love guide this process? How can I accept this new reality?
5. Create your tribe, yes, that group of people or that person you can go to and vent. Stay away from negative thinkers or those who do not know a bit about your reality.
6. Your days should become a play session. Make your child laugh. Allow your child to make you laugh.
7. Be patient-- the biggest test ever!
8. Decide if you want to be a parent or an individual. If you can't be a parent, embrace what it means and do not wait to seek help as soon as possible.
9. own every experience with your child (or children). Do not blame others, make a plan for every outing and be flexible!
How have you two overcome some tough obstacles during your journey? What do you believe is important while spreading autism awareness?
Owning the experience allows us to overcome the tough challenges. Yet poverty is the greatest challenge when you have a diagnosis because it limits the capability to gain access to therapies and services that do provide short and long-term quality of life. In my opinion, it does not mean that everything becomes an impossible but many times it is harder and it takes more patience and it takes more work. It takes trying over and over and over and over. If you want to succeed, you must be willing to keep trying a hundred times when in some cases other people only have to try 5 times.
The word fighting says it all when you have to fight autism. You have to be focused, concentrated, look at the weak point, and attack the weak spots! How do you do it? Research and talk to others who are doing the same! Savor all victories; it is your victory and that of your child. When there are setbacks, take a deep breath, cry if you need to, and get back into your fighting stance and do it all over. My daughter is a result of this and more; now that she can speak again, I have asked her: "Why do you love me?" Thomais replied back, "Because you always fight for me!"