My parents have been my rock throughout my journey with Autism. Both of them have helped me so much and I can never thank them enough. All I can do is love them! My mom and dad are the best parents that I could’ve ever had. They love, support, advocate, and care for me and my brother. If I can be half of a person that they are, I’ll be just fine! Before I publish my next blog post about some of my challenges during the winter holidays, I interviewed my mom and asked her a few questions about her personal experiences with caring for me (a teen on the spectrum).
This idea came from one of my viewers via Facebook. If you have any ideas, please comment on any of my social media pages or email me, which can be found here. Thank you to all of the viewers who submitted questions!
When did you find out that Ethan was diagnosed with Autism and how did you feel?
“I found out when Ethan was two and a half. Ethan had started seeing a speech therapist when he turned two because his speech was very slow to develop and no one besides his very close family who saw him frequently could understand him. During one of his speech sessions, the therapist recommended that he get evaluated to determine if there was a ‘more global explanation’ for his difficulties. A full developmental evaluation was performed and during that appointment, we were told about his diagnosis. I was shocked and yet at the same time knew that this explained the other difficulties that he was having. I immediately went into treatment mode to get him started with all of the therapies that he needed. It wasn’t until six months later when I was able to stop working and focus solely on Ethan that I began to deal with my feelings regarding the diagnosis. I cried, worried, and grieved a lot and spent many very late nights on the computer doing research. I was heartbroken because I wasn’t sure what his future and quality of life would be like. I was very lucky to have lots of close family and friends to help me get through this very difficult time.”
What made you suspect that he could be on the spectrum?
“I noticed lots of little things while Ethan was an infant but didn’t put everything together until Ethan’s speech therapist nudged me into it. When Ethan was three months old, his pediatrician had to be changed because the doctor talked loudly and Ethan would just scream whenever Ethan was in his presence. My mom and I also attempted on several occasions to get handprints and footprints of him in those little clay keepsake kits, but Ethan would always clench up his hands and feet and we could never get good imprints. There were many other instances throughout his first two years which made me realize that he was a very sensitive child, like not liking certain foods, not liking to walk on grass or sand, etc. Between the age of one and two he started walking on tiptoes, was more rigid, would withdraw when new people would approach him, and began to have a lot of extreme tantrums, much more than a typical toddler. While Ethan was delayed in a lot of areas, he also had many skills so I didn’t quite put everything together until an outside source urged me to take a closer look.”
What has been the worst part during Ethan’s life?
“There were two worst parts that I recall most. Between the ages of three and five, it seemed as if every single day was full of many tantrums and meltdowns, a lot of stimming, a lot of frustration and anxiety on Ethan’s part, and constant struggles over much of the day. The other extremely difficult time was when Ethan was around seven and eight years old. This is when he was at his most aggressive stage. Our younger son was two and three years old at the time and we really feared for his safety many times. I was often covered in bruises from being bitten or hit because I was the main target of his aggression. During this time, Ethan was also realizing that he was very different from his peers which caused him to get very depressed. This exacerbated his aggression and also led to many episodes of Ethan crying and saying that he just wanted to die. It was devastating to witness repeatedly. With psychotherapy, medication, and his ongoing services at school, home, and some additional behavioral intervention, we were able to get through this very difficult time.”
What has been the best part during Ethan’s life?
“Again, there are two times that come to mind. The first is when Ethan was thirteen and in the process of completing preparation for his Bar Mitzvah and the Bar Mitzvah itself. Ethan was feeling confident, accomplished, and loved by his community. On the day of Ethan’s Bar Mitzvah, which was the culmination of many years of study and hard work, Ethan absolutely shined. It was so special to see him feeling so confident and proud of himself. I think he was really able to feel the love and support from his entire family and community. That feeling lasted for a very long time. The other moment was this last year in high school when Ethan really became comfortable in his own skin and accepted who he is. For the first time, he put it out for the whole school and then the whole world to know the he had Autism. In the past, he only allowed me to tell close family, friends, and school personnel. This acceptance has led to so much empowerment, so many good things for him, and has given him direction in his life.”
How is it like working with a special education team at school?
“We were very lucky to have the best teams working with us in preschool and elementary school. I always felt as if these people valued my input and had Ethan’s best interests at heart. I knew from the time of Ethan’s diagnosis that these people would be closely involved with Ethan’s life for many years and so I always made sure that our meetings were friendly, respectful, and professional even when we disagreed. In middle school, things were tougher as the teachers and special education team did not understand Ethan as well and therefore didn’t understand his needs. My advocating skills were definitely put to the test as well as my skills at maintaining a respectful and professional environment in all meetings. In high school, things have gone well thus far. This has been a time of teaching Ethan how to better advocate for himself and teaching him that in order to get what he needs, he needs to be open and honest about his strengths as well as his weaknesses and difficulties.”
What should parents expect during the first Individualized Education Plan (IEP) meeting?
“The first IEP meeting is overwhelming because there are so many people from the school’s side, as there is an administrator, teachers, and every discipline represented like speech, occupational therapy, adaptive PE, etc. There is so much information being given to you by every discipline (test results, current levels of performance, goals for the next year, any behavioral plans developed, etc) and it’s hard to process all of it so quickly. They want goals made and decisions finalized and you’re still trying to figure out what’s what. It’s important to remember that you know your child best because it can be tempting to just accept what is being said during this initial meeting. I have standard rules now for all IEP’s. I always ask for all reports to be given to me at least a few days before the meeting so that I can read and digest the information and develop any questions I have or points that I need to make. I ask if the different specialties have proposed goals in mind already and if so, I ask for those in advance as well. I also never sign and finalize an IEP while at the meeting. I tell them that this is my standard policy and then I take the proposed IEP home to reread it and look more closely at it to determine if we missed anything or if something needs to be changed. It also helps to have your spouse or a friend along with you at the meetings for additional support.”
What is your advice for other parents that have children with Autism?
“This is a lifelong journey and there are many ups and downs along the way. Notice and celebrate the small improvements and victories along the way. Know that the difficult times will pass. This is a motto that I strive for everyday: “Life isn’t about waiting for the storm to pass, it’s learning to dance in the rain” - Vivian Greene.”
“Be cautious of the internet. It can be a great friend and lead you to many helpful things. It can also lead to long nights on the computer in search of every possible way to help your child, many of which are unproven and cost a lot of money with little result. Use your time and money wisely.”
“Surround yourself with people who know what you’re going through. No one really gets it like other parents who have been there as well. They can be a steady source of support.”
“Don’t hesitate to ask friends and family for help when you need it. I have difficulty with this, and I wish I had done this more when the kids were younger. Even if someone cannot watch your child, he/she can go grocery shopping, fix a meal, do laundry, or take a sibling to school or out for a few hours. They can bring you coffee and a muffin and provide adult conversation for a couple hours. The list is endless. People want to help but don’t know how to.”
“Make a special effort to take care of yourself and your marriage. It is so easy to focus solely on your child, as there is always an endless list of things to do or work on. I fell into this trap early on and everyone in the family suffered as a result. ‘Me time’ and ‘Couple time’ is ESSENTIAL!”
“It’s so easy and natural to get upset or mad when people give you dirty looks, follow you around the store, or make hurtful or mean comments to you or about you/your child. I try really hard to use these encounters to educate people, as the behavior often come from ignorance or insensitivity rather than outright nastiness. I explain why my child is acting a certain way, why I am not leaving the store and reinforcing the behavior, or why a particular comment is misinformed or insensitive. The more people who understand Autism, the more it helps our children.”
“Remember that, while Autism is a part of your child and your family, it does not make up the entirety of your child and family. Don’t allow it to completely limit and define all of you. Yes, there are things that your child may not be able to do in a ‘typical’ way, and family outings may look different than you imagined in your mind, but find a way to still do family traditions, special moments, and milestones in a way that works for your family.”
Thanks for reading and look forward to an interview with my dad sometime in the future!