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 8 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.
When did you find out the gender of your baby? How did you feel? Was a girl your preference?
I found out the sex of my baby about two months before she was born when I had my second sonogram. I was so excited when the doctor said it was a girl. I even asked her if she was sure it was a girl. I wouldn’t have minded having a son but if I was only able to have one child., I would have wanted a daughter.
How did you feel the first moment you were able to hold her in your arms?
I had preeclampsia during my pregnancy and I couldn’t leave the hospital bed until 24 hours after giving birth. Storm Asenath was in the neonatal intensive care unit so I couldn’t hold her until she was almost two days old. When I was able to hold her I was happy and relieved everything was over with. She was the cutest and tiniest baby I had ever held.
Storm is a very unique name, can you explain the meaning behind her name, Storm Asenath Miracle?
One night when it was raining really hard my ex husband said “If we ever have a daughter we can name her Storm.” Asenath is Joseph’s wife’s name (Genesis 41:45). When I was younger I said if I have a daughter I would name her Asenath. I had a complicated pregnancy and during one of the emergency room visits my mom said, “This baby is a miracle baby. Miracle should be somewhere in her name.”
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 a lot at two yrs my mom was really 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 her 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. She 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. The speech specialist mentioned she may have autism and referred Storm Asenath to a team of doctors for a battery of tests.
What led you to think it was Autism?
I wondered if Storm Asenath might have autism when she
- a. around age two stopped saying the ten words she knew.
- b. broke the corners off her crackers before she ate them.
- c. instead of playing with her toys, would line them up in a row.
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). She also has sensory processing disorder.
Where you shocked?
No, I wasn’t shocked I was relieved to finally have an official diagnosis. Instead of wondering I could now start getting her the services she needed to improve.
What were some of the things that went through your mind?
Honestly, when she was diagnosed not a lot went through my mind because I finally had an answer to my question, does my child have autism. In fact, the doctors that diagnosed her made the comment , ” You are handling this really well”. I guess I didn’t react the way most parents do when their children are diagnosed.
How did you feel? Where you angry? Where you sad?
As far as my feelings go the day she was diagnosed, they were no different than any other day I had in the last thirteen months. I had been sad since the specialist told me she was cognitively delayed.
How did you begin to deal with your feelings?
I am not sure I have fully dealt with my feelings. I don’t cry daily like I did at first.
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.
Describe some of the challenges she currently has as an 8 yr old.
As an 8 year old she has difficulties:
- 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
Describe some of her biggest improvements over the past 5 years.
Storm Asenath has accomplished so much in the past five years but some of her major accomplishments are effective communication, decrease in hyperactivity and less meltdowns. Verbally, she does not have the vocabulary of an average eight year old because of the autism but, she can now communicate using sentences and questions that she has formed on her own. This is a HUGE improvement because echolalia is common in children with autism. Echolalia is one of the most salient aspects of communication disorders in autism. Echolalia is the immediate or delayed echoing or repetition of whole, unanalyzed expressions or reciprocation. A child may speak in sentences but (s)he will repeat sentences (s)he heard someone else say. The decrease in her hyperactivity can be noticied by her being able to stay seated without popping up and down for more than a hour. I am happy to report she was able to watch an entire Disney movie in a public theater full of people. Also she can go to a variety of places in one day and not have any meltdowns.
Describe your biggest challenges in raising Storm?
Three of my biggest challenges in raising Storm are staying on top of her academic progress, figuring out all the things she still can’t express, convincing others she is capable of doing much more than they think she can.
How do you feel when the general public doesn’t know how to respond to Storm?
When Storm was really young I would feel stressed and embarrassed when she had her meltdowns in public. People would automatically assume she was misbehaving and needed to be disciplined so I had a card made that I would pass out when she had public meltdowns. Thankfully, she has very few meltdowns now. When she does I am no longer embarrassed and I do not care about the stares.
What are some things you do to help educate others about Autism?
When Storm Asenath was first diagnosed I tried to educate myself as much as possible about autism. After I educated myself I passed out autism info sheets to all of my family and friends. I carry autism information sheets in my purse. I give them to people in the community I meet and talk to that are interested in learning more about autism. I have also written articles about autism that were published and discussed the topic of autism on a local radio community forum.
I hear you have been very instrumental in raising awareness in your community, what are some of the things you’ve done?
I have written letters to my city council representative, state representatives and U.S.Congresswoman. A couple of years ago I met with the mayor of DeSoto, Texas to discuss raising awareness. This year I wrote him and asked if he would issue a Proclamation declaring April 2 as Autism Awareness Day in DeSoto, Texas. He went a step further and issued a Proclamation declaring that April was Autism Awareness Month in DeSoto, Texas.
Tell me about Asenath’s Place:
I live in an area that is like an autism desert. I formed Asenath’s Place to help fill some of the needs of children with autism. Asenath’s Place is still in the beginning stages but once everything is completed Asenath’s Place will be a developmental and learning center that focuses on children with autism.
What is your long term goal in raising Storm?
My long term goal is that Storm Asenath’s accomplishes everything she is capable of accomplishing.
What do you see in her future?
I try not to think too hard about the future but whatever Storm’s future happens to be, I will be proud of her.
I know Storm is an amazing little girl. If you had to describe her using three adjectives, which ones would you choose?
Storm Asenath is smart , sweet and sensitive.
Give me your opinion on what you think causes Autism?
In my opinion everything is a result of genetics. I know it’s not this simple but it could be that we (the parents) of children that have autism are recessive carriers of some of the genes that causes autism. It has to be some combination of genetics and environment. I do hope, whatever the cause(s) of autism are, we find it before the number of American children with autism is 1 in 2 on the autism spectrum.
What are some things you’ve done that have been instrumental in Storm’s improvement?
- Praying for her
- Working really hard with her
- Giving her a lot of verbal praise
- 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
There are millions of parents faced with the challenge of Autistic children, can you give them three pieces of advice?
1. When telling others about your child’s diagnosis say “My child has autism”. Don’t say,” My child is autistic.” You want to control the autism not let autism control your child. (There will be many days when it feels like autism has your child).
2. Do not compare your child to other children on the autism spectrum
3. Remember this quote by Joan Rohde~ “The truest measurement of my growth and accomplishments is in remembering where I came from where I’ve been and where I’m going.”
Give me the top 10 warning signs of a child with Autism?
I wouldn’t really say the following signs are the top ten signs of autism but they are ten signs that I think are really important.
- No speech, non-speech vocalizations or delayed development of speech
- Echolalia (repeating something heard at an earlier time) a lot of times the child will say the phrase and it has nothing to do with what is being talked about at that moment
- Uneven development – a child may be delayed in some areas and on track or even advanced in other areas
- Lack of interaction with other children
- Preoccupation with hands or flapping of hands
- Spinning in circles or spinning objects
- Confusion between the pronouns “I” and “You”
- When picked up, offering no “help”
- Walking on tiptoes or posture/ gait disturbances
- Lack of interest in toys or only interested in part of toys
Your final thoughts:
Caring for a child with autism has rewards but it can also be isolating and overwhelming. Parents/ guardians of children on the autism spectrum can not raise their child alone. We need your help! If you have a family member or friend with a child on the spectrum you can do one or all of the following things for them:
- call, text or email them and let them know you are thinking about them
- visit them
- offer to run errands for them
This interview was conducted by SaRatta Reeves and the interviewee was Sabrina Reeves Partee