Neurotypical Mom, as a Special Needs Mom your world is foreign to me. Rotating seasons of soccer, cool moms club, overnight parties, and college sororities comprise a universe outside my own. Church youth camps and activities that have the word “team” in them are just painful reminders that I have a special needs child. Your child is included, mine is not. And I must find a way to turn these negatives into positives for the sake of my child’s future.
Raised competitive from a small town with sports and cheerleading in a world that didn’t include Autism makes it even more difficult to confess these surprising emotions. I’m not a whiner but what I want to do is shout “It’s not fair!” The only ones that hear or seem to want to understand this alien and painful feeling are what I’ve grown to refer to as special needs moms.
Q: Could you go into detail on other types of relationships (friends, co-workers, acquaintances, etc.) that you have had? Do you have a specific example of a misstep? Or situation that you were able to handle because of something you had been taught?
A: Years ago, I was asked to help lead songs for a college-age Bible study (I was 30). Eventually, some of the women in the group went to the leader and told him they were uncomfortable with the way I looked at them. I was asked not to come back. I was in complete shock, and kept trying to figure out where I went wrong.
Please help us welcome Ethan Hirschberg to the Aspergers101 family of bloggers! Ethan will offer his insights to living on the autism spectrum first-hand and we think you will be inspired, informed and delighted as much as we are! In his first blog with us, his Mom answers questions basic to families facing the diagnosis of autism.
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).
Question: 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.”
Question: 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.”
Question: 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
Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses.
Others with sensory processing disorder may:
- Be uncoordinated
- Bump into things
- Be unable to tell where their limbs are in space
- Be hard to engage in conversation or play
Adrienne Gaither, OTR, C-SIPT with the Autism Community Network in San Antonio Texas, addresses questions on Sensory Processing and how the disorder may apply to your child diagnosed with an Autism Spectrum Disorder.
What is Sensory Processing Disorder (SPD)?
Watch the rest of this medical vlog series:
- What Causes Sensory Processing Disorder?
- What are the symptoms of Sensory Processing Disorder?
- Is Sensory Processing Disorder Treatable?
- Do all children with SPD have Autism?
- Autism Intervention: Parent Mediated Approaches
Having a life means facing our fears and going out
There comes a time in every Aspie’s life, that having a life means facing our fears and going out into the world. I love to sing, do stand up comedy, go to restaurants and sometimes (although very rarely) I even want to go to a party. Does this mean I don’t have Aspergers? Of course not! People with Aspergers want to socialize, but years of getting it wrong may knock the desire to try right out of us. It is never going to be easy.
Performance, on the other hand, may be quite comfortable for many aspies, because people stimulate the amygdala in our brain causing a rush of adrenalin, perfect for belting songs on stage, or short bouts of witty banter. But authentic communication in a crowd—and by a crowd I mean more than one—very difficult. We get overloaded, awkward, bombarded, confused. Rocket science may be simple, but social conversation is an unfathomable mystery for many of us. Here are a few basics to help you in social situations:
- Keep in good mental and physical shape, through healthy diet and exercise
- Have interests and activities that raise your self-esteem. If you like and value yourself, others may follow suit.
- Manners are the oil which make situations run smoothly. Please, thank you, hi, how are you, nice to meet you, goodbye, have a nice day, may all seem trite and meaningless but they are cues, transitions so that things can flow. Consider them signposts or turns in the road.
- Always ask how the other person is, and it helps to throw in a “how is your family?” (or pet, or girlfriend, etc.)
- Don’t go on and on about yourself or your interests unless asked, and not for more than a minute.
Children and teenagers with Asperger’s Syndrome often struggle with the social skills necessary for success in school and social settings. We interviewed psychologist and acclaimed expert on Asperger’s syndrome, Dr. Tony Attwood, for our documentary on Asperger’s.
Dr. Attwood offers proven tips and advice to help bolster the social skills as we approach back-to-school.
Steps that parents may take to help their kids with Asperger’s include the following:
One of the most challenging aspects of supporting college students diagnosed with Asperger’s Disorder is the need for follow-up with professors, college staff, and others. Follow-up is important to ensure deadlines are met and that assignments are turned in according to each syllabus. The fast pace of college, combined with the severe anxiety and executive dysfunction common to the spectrum, create the perfect conditions for students with ASD to forget deadlines or avoid high pressure academic or social situations on campus.
I’ve known dozens of students with ASD who promised: “I will work on my speech for Communications class this evening after dinner.” And they mean it sincerely when they say it. Stress and commitments mount as the day moves forward, however, and by dinner time students who made the promise may feel overwhelmed and overstimulated and avoid the assignment. Some may become focused so intensely on another subject or topic that they forget about working on their speech.
One year ago, Aspergers101 launched a Summer Series on Autism in conjunction with the San Antonio Public Library System. WOAI-TV live-steamed all four conferences and area experts on Autism participated in a panel discussion at the conclusion of every power-packed workshop.
Kicked off by Ron Lucey with the Texas Governor’s Committee on People with Disabilities and announced by Ramiro Salazar, Director of SA Public Library System at the Press Conference, it was a huge endeavor that allowed free access to information on Autism.
This is community and teamwork at it’s finest!
We want to share all four sessions with you.
The topics are as follows:
- Diagnosis 2. Social Development 3. Choices in Education and 4. Independent Living
Press Conference Announcing Aspergers101 Summer Series with the San Antonio Public Library Asperger Syndrome: From Diagnosis to Independence.
May 3rd 2017 10:30a San Antonio Public Library Downtown
SUMMER SERIES VIDEO LIBRARY
Do you suspect someone you love has autism or Asperger Syndrome? This program explores the signs, the medical explanation, and the hardwired facts. Topics discussed: signs of autism, the importance of diagnosis, grief, and moving forward with awareness. Hosted by Jennifer Allen, Founder of Aspergers101 and her son Samuel Allen. Special guest: Dr. Berenice de la Cruz, Ph.D., BCBA-D, Chief Operating Officer, Autism Community Network. MORE: the San Antonio Public Library and Aspergers101 announced a partnership and upcoming four-part educational series that will focus on understanding and excelling with high-functioning autism or Asperger Syndrome. A well-known team of autism experts (many of whom live successfully on the spectrum) will participate in discussions about important related topics. A question and answer session with the panel experts will follow each night. The series will be presented by Jennifer Allen, Founder and CEO of Aspergers101. Aspergers101 is a local nonprofit dedicated to empowering and educating individuals with high-functioning autism and Asperger Syndrome, their advocates, and the community.
#1 Diagnosis (May 9th 2017)
Download the pdf Powerpoint Presentation on “Diagnosis” here: Diagnosis
#2 Social Development (June 13th 2017)
Download the pdf Powerpoint Presentation on “Social Development” here: Social Development
Message From the Texas State Capitol
Revolutionary Employment Program Introduced