April 2nd is World Autism Awareness Day. It is an internationally recognized day which encourages member states of the United Nations to take measures to raise awareness about children with autism throughout the world. We at expressions bracelets have a very special reason to wear blue that day. My niece Storm has autism and she is the reason eb donates a portion of each sale to raising awareness. Each year, we choose a few autism awareness organizations/charities to donate funds to help them spread the word.
This year, I want to share an interview I did with Storm's mother, my sister, in 2014. We did a few updates to catch you up to date on this amazing little girl. Here's the interview:
In a world where so many things are taken for granted, it is not often that parents realize how TRULY blessed they are to have children without special needs. But on the flip side, those parents that DO have children with special needs are VERY special parents that have been blessed with a gift that most cannot care for. I know of one very special parent that has sacrificed life as she once knew it, to care for her daughter. I admire her more that words can express. She was chosen by a higher power to give birth to a very special little girl, my 11 yr old niece, Storm Asenath. This is a candid interview with my sister, Sabrina. In this interview she speaks openly about her and her daughter’s battle with Autism. It is time to listen.
How was Storm’s first year of life? Did she develop on track with other children her age? If not, what was different?
Storm Asenath’s first year of life was mostly normal. She started crawling and walking at the appropriate month. She also babbled a lot. The only thing that concerned me was after she started holding her bottle around six months, she suddenly stopped holding it and she never really started holding her bottle again.
When did you first notice signs of a possible developmental disorder?
My mother was the one who noticed her speech wasn’t on track. My sister and I were early talkers so when Storm wasn’t talking at age two my mom got worried.
When did you know it was autism?
During her two year old check up I asked her pediatrician if autism was the possible cause of Storm's speech delay. I completed a short autism checklist but, she didn’t have enough of the signs on the checklist to be considered as possibly autistic. She qualified for speech therapy, I asked one of the therapist if she might possibly have autism. The therapist said she had some of the signs of autism but, she also did other things that were not typically seen in autistic children. After months of extensive therapy she had not made any real progress so I had her speech evaluated again. This time the speech specialist mentioned she may have autism and referred Storm Asenath to a team of doctors for a battery of tests.
What was Storm’s diagnosis and when was it official?
Ironically, Storm Asenath was officially diagnosed in April, during Autism Awareness Month. On Wednesday, April 8, 2009 at almost 3 1/2 years old she was diagnosed as having autism and attention deficit hyperactivity disorder (ADHD). After Storm participated in a pilot program for newly diagnosed autistic children I learned she also had sensory processing disorder.
Describe some of the challenges Storm had as a toddler.
Just about everything was a challenge. Some of the few were:
•She knew very few words so she couldn’t tell me what she wanted.
•She had a hard time being still for more than two minutes at a time.
•She really couldn’t go anywhere because, everything overwhelmed her and she would have meltdowns.
The last time I interviewed you Storm Asenath was eight. Describe some of the challenges she had as an 8 yr old.
- Remaining calm and not becoming overwhelmed
- Concentrating and focusing
- Remembering to walk and not run and jump when she goes from one room to the next one
Storm Asenath April 2014
Describe some of the biggest challenges Storm currently has as an 11 year old.
- Difficulty completing some basic things by herself
- Focusing and concentrating for long periods of time
- Major academic challenges
So far what have been your biggest challenges in raising Storm?
Three of my biggest challenges have been staying on top of her academic progress, figuring out all the things she still can’t express and convincing others she is capable of doing much more than they think she can.
I know Storm is an amazing tween. If you had to describe her using three adjectives, which ones would you choose?
Storm Asenath is sweet, funny and curious.
Describe some of her biggest improvements over the past 3 years.
Storm Asenath has grown up a lot during the last 3 years. Literally, she is now 5ft 3 in!!! Some of her biggest improvements are participating in church, helping me shop for groceries, getting her teeth x-rayed during her dentist visits, sitting still long enough to have her blood pressure taken during check ups and speaking to others before they speak to her. Storm's two accomplishments I am most proud of are being a junior bridesmaid in my sister's wedding in 2015 and making her first TV appearance on Good Morning Texas last year!!!!
What are some things you’ve done that have been instrumental in Storm’s improvement?
- Praying for her
- Using the strategies given to me by her speech therapists
- Using the information I learned when I participated in a program for children with autism and their parents
- Homeschooling her
- Challenging her to do things she doesn't want to do
- Giving her choices
- Working on her social skills
- Working really hard with her
- Giving her a lot of verbal praise
- Treating her like a "normal" child first then modifying my expectations to fit her capabilities
Read the rest of this incrediible interview blog in Part 2.