I have to start off by thanking Janina Freeland, thank you! I reached out to her not knowing if she would be willing to share their family’s story with us. Not only did she agree, but she gathered more families to talk to. Thank you to the Swingle Family, Rayburn Family and the Rucki-Stanley Family. I didn’t know what to expect when I started this, but I can safely say I’ve learned so much along the way. Each child with Autism Spectrum Disorder is different. Each family is different. However there are similarities between them, most importantly, people with ASD are highly capable individuals. They hear everything, and are usually in tune with their environment. It’s the lack of communication skills and our perception that they are “in their own world” that can misguide our thoughts. They have the same feelings as other kids their age, they lack the ability to express it. Also, they all know to stay positive, have patience, don’t worry about the future just enjoy now, don’t take anything for granted and have faith. Which seems like very good advice for all of us. Janina reached out to me after our interview with more thoughts. Her daughter was diagnosed with ASD, but she is more than that. The family is more than that:
“Being an autism family can definitely feel lonesome at times. Sometimes I feel like we have a spotlight over us. When we go out to a restaurant, anything can happen. One day it could be perfect and the next time it could be a disaster. Usually preparing for a restaurant or family outing will take a lot of preparation. We have to know exit routes, if there is wifi available, noise level, if we could get a booth, and if they have quesadillas. It sometimes feels like we are going on a mission when it is simply just going to dinner. We have to be prepared if people stare at us because she is being too loud and how to calm her if something upsets her in a restaurant. We have to teach our younger daughter to ignore the stares and not feel upset when Ava is reacting to something. In the end, taking Ava out and exposing her to situations only makes her better. It may be difficult the first time for her but if she is not exposed to the world, she will not be able to function in it when she gets older.
Ava enjoys singing happy birthday and eating birthday cake. It is her favorite event. She enjoys our family being together. When all her family members leave after celebrating a birthday party, she makes us all stand in a parking lot, restaurant, wherever and do a large group hug.
Ava loves Legoland. Her favorite ride is the spinning horse ride and she will go on about 10 times in a row until you stop her. Legoland is very accommodating to autism. They have “Hero Pass”, which allows children with autism to get on the rides without waiting and they offer “cool down” rooms for families if the child is getting over stimulated. Legoland is definitely one of our favorite family outings because it allows us to be comfortable and know that the staff is trained to assist when needed.
I will usually drop whatever I am doing if Ava wants a hug, a tickle, a kiss, or for me to sing a song with her. If Ava wants interaction, the world around me will stop and I will enjoy every second of it because I don’t know when the next time she will feel that sense of closeness with me.
Anyone who meets Ava, falls in love with her free spirit. She is who she is. She has taught me that life is too short to worry about things I can’t control. She has made me a stronger person, caring teacher, and someone who can find the good in a bad situation. I owe a lot of who I am to Ava. I don’t remember the kind of person I was before she came into my life. All I know is I am better than who I was.” -Janina Freeland
“The disorder of Autism is on a spectrum for sure, but I’m not sure the parenting of an autistic child part is. The loving, caring and daily practices the parent of an autistic child undertakes...there’s no spectrum. Every bit of it is REALLY, REALLY hard!” -Katie Swingle
“Challenges, there are so many. But I personally try to focus on the positives and gains, otherwise you can be overwhelmed with responsibility.” -Trish Rucki
“We struggled with the diagnosis at first. We went through a grieving period for the loss of the child we were “supposed” to have...Then we had an epiphany: God has a plan! Why not us?” -Holly Rayburn
I sat down with Mom, Janina and little sister, Kendall. Full of smiles, Janina’s sense of humor and Kendall’s eagerness to tell me all about her sister were apparent. They were both very open and honest. I’m pretty sure if time permitted, we could’ve sat for hours and talked. This is a glimpse of their life, their “normal.”
As a baby, Ava hit all of her milestones. At about 18-20 months, she stopped waving at people. One day she wouldn’t say goodbye anymore. When she started in a 2-year old class, she wasn’t interested in the other kids or what they were doing. They started noticing her repetitive speech, she could recite an an entire episode of Dora, however couldn’t express simple things that she wanted. Janina knew something was off after spending a vacation with family and seeing how Ava reacted to her cousins of the same age. This began the long process of finding a diagnosis. They started with USF Early Steps and everything started to fall into place.
Ava is on the Autism spectrum and language impaired. Janina explained how Ava can say, “I want a cookie.” But if you ask her how her day was, she will say “How was your day,” because of her echolalia. Repeating is her form of learning.
Janina and husband Brian both work. “My work is my biggest support. If I didn’t have my teacher friends, the principal and all of the people there, I would be extremely stressed out. My administration supports me. Our family is our support. Ava comes first, they know that. I’m very fortunate to have that sort of work environment. We have a village of people that help get us through the day,” explained Janina. “Ava is extremely routine oriented. She does not deviate from routine very well. Miss Marie comes to the house everyday and does all of her morning activities with her, getting dressed, bathing, drives her to school, etc. At school, they incorporate her speech and behavioral therapies into her day. After school, she has someone pick her up. We have a lot of people help out especially if Kendall has an after school activity or something like that. If there is going to be a change, we have to prepare and show Ava what will be different for the day. She has to visually see on a calendar what is changing. Even if we’re introducing a new dinner to her, she needs to know about it ahead of time.” Brian talked about how the challenges are always changing. “Having a child with special needs really tests your multitasking skills, quick thinking skills, communication skills, de-escalation skills, patience, character, and bottom line - your guts (the stuff inside you and what you are made of). Do you have the stuff that it takes because it is not going to be easy.”
Janina talked about Kendall’s role. “Kendall is very helpful. I’m very lucky to have her, because if something’s going on, she just steps in to help, she doesn’t even need to be asked.” Kendall continued, “When I’m crying, Ava will say, ‘hug!’ Or if Ava is crying, I help her. I say, ‘Calm down, you can do this.’ I offer to help her but if she does something on her own, I’ll say, ‘Good job, Ava!’ and give her a high-five.”
When asked how having a child with autism has changed their life Brian explained, “Having a child with autism didn’t change my life as much as others probably. I am not a good person to ask. I am a realist and look at life as, it is what it is...you always have choices on how you live it, you decide that and not the environment or the people in it. You want to be happy, be happy - you want to feel sorry for yourself and be sad, then be sad. Ava is definitely in her own world and she lives it the way she wants 100% of the time without hesitation so I have learned from her on this aspect very much and try to do the same.” Janina said she doesn’t take things personally, she doesn’t take some things seriously. Have fun with life and don’t take anything for granted.
The misconceptions people have are many. Janina went into detail, “If you see Ava having a bad moment, I don’t want people to think that’s what autism is. Autism isn’t just all about the meltdown at a store. It’s a very big deal that she’s in a store, it took a lot to get her there, she’s not comfortable. We try to work through the meltdown, if someone sees that, they might just judge my parenting skills. Just understand that we’re working through something. Ava is capable of so much more than we give her credit for. She may seem like she doesn’t know what is going on at times but she hears everything. Ava is just like a typical 12-year old with teenage feelings. She may not be able to express them verbally but she feels the same emotions. She understands everything going on around her. People think that she doesn’t know when we are talking about her, but she does. She is very in tune with her environment and sometimes her ‘in her own world’ mentality is mistaken for not understanding what is going on around her.”
Janina finished by talking about going to Tiger’s World. She’s able to workout and process thoughts from her day. On the first day she walked in, she saw this, “Don’t pray for an easy life, pray to be a stronger person,” and now she lives by it.
When Dexter was 2 years old, he stopped responding to his name and making eye contact with people. His speech and communication skills were not developing normally. After visits with his pediatrician and a neuropsychiatrist, he was diagnosed with Autism Spectrum Disorder at a moderate level. Dexter is currently 5 years old and attends Achievement Academy. He has plans to attend an Elementary school with nuero-typical kids his age next year where he will also receive one on one time to get help in any areas where he struggles at his new school.
Dexter’s Mom talks about some of the challenges. “Because of his limited communication it is difficult to understand his needs at time, he tends to get very upset because he can’t express what is in his mind. This can be especially hard when he is sick and can’t tell us what is bothering him. I feel as though he doesn’t feel pain to the same intensity most people do. Or when I pick him up from school/daycare and ask how was his day. I don’t usually get an appropriate response, But I still ask everyday waiting for the day he responds back to me. Oh what a day that will be.”
A typical day for Dexter is attending the Achievement Academy for PreK, Monday-Friday. One on one Speech Therapy (ST) and Occupational Therapy(OT) one time each per week. 8 hours of (ABA) Applied Behavioral Analysis each week at Holladay Child Development Services in Lakeland. One 30-minute Outpatient ST and one 30-minute Outpatient OT each week at Pediatric Therapy Services in Lakeland.
“He also attends a Wonderful Daycare in Eagle Lake, Safe and Sound for after school care, school breaks and summer. They have been wonderful to Dexter and our family. Special thanks to Mr. Zach, Mrs. Carol and her husband, Mrs. Janet and Mrs. Dianna,” his Mom, Trish explained. “Between myself, Derrick Stanley(Dexter’s Dad), Gomer (My Mom, Pat Grier), and Uncle James Rucki and additional support from Papaw (Derrick’s Dad, Dave Stanley) make all this, as we call “Crazy Normal” happen. It really does take a village. We also have amazing support from our employers in support of our special needs. Thanks to Steve and Kathy Daniels SRD Construction and Denise Overlock at Cora Health Services. Between school, therapies, both his dad and I work full time jobs. It can be hard to find family or one on one time with Dex. But every Tuesday between ABA and ST we go the the park for 30 min. That’s our special time every week.”
When asked about the biggest misconception people may have, Trish responded, “I think that most really don’t understand what Autism really means, including me. Though I live day to day as a Autism Mom in an Autism Home, each day can be different. I’d say that the biggest misconception about Autism is that people think a person with Autism doesn’t crave acceptance/attention or doesn’t care to want friends. While I think this is true for some autistic persons, it is also true for some nuero-typical person’s too. This is especially NOT true for Dexter, he loves people and his friends. We have been lucky enough to encounter all positive experiences so far with his peers, teachers, therapists etc.”
How has being a parent of a child with autism changed your life? “Lol, how many ways I could count that Dexter has changed our life. He is a blessing in so many ways, he is so sweet and such a happy boy. I appreciate all the small things in life about raising a child that I think some parents can take for granted or not celebrate in the way we do. Each milestone he reaches is extra special because we wait so long for it that when it happens, it’s like a little miracle. Good news is they keep coming for Dexter. And though this may sound like a complaint, it’s quite the opposite. I don’t really have any ‘me’ time or ‘Us’ (as in Dad and I) we spend our extra time dedicating ourselves to Dexter’s growth and development to give him the best independent and functional life as possible. The good side, I spent a lot of time with Dexter at all these therapies which has given us a very special and close bond.”
At age 2 ½, T.J. was diagnosed with Autism Spectrum Disorder. “We noticed T.J. had delayed speech, wasn’t hitting certain developmental milestones, like pointing and making eye contact, and he wouldn’t answer to his name,” said his Mom, Holly. After talking to the pediatrician about it, they started an 8-month process of screenings and evaluations to finally get an answer.
T.J. is now 4 years old and has a moderate to severe diagnosis. He is non verbal. Without being able to speak, he is presented with the challenge of trying to express himself. Holly talked about how he has learned to work around this. “He will take my hand and lead me to things he wants. He cups your face and smiles really big or kisses your face to show affection. He will bring me the remote when he wants to watch Disney or walk me to the back door if he wants to play in the backyard.”
An average day for him consists of attending school at the Achievement Academy. There, he receives speech, occupational and physical therapy. He learns by being shown step-by-step with multiple repetitions. Holly says his teacher, Mrs. Robyn does a “fabulous” job of not only helping T.J. but helping all of the kids work to reach their potential. After school, T.J. visits with his Mimi, Cathy where he likes to help with her poodle and laundry. In return, Mimi (his paternal grandmother) reads Llama Llama, Red Pajama to him. When it’s time for Holly to pick him up, they like to stay active. “T.J. is very outgoing and loves to be outdoors playing with his sister. He also loves to paint and watch The Lion KIng,” explained Holly. T.J.’s older sister is Milly and she’s 6 years old. “She loves her little brother to pieces.”
I asked Holly what is the biggest misconception people have about children with autism. “The biggest misconception people have is that children with autism are unable to make connections with others. T.J. has a special way of showing his tenderness with lots of hugs and kisses. He enjoys parallel play, which is playing next to someone but not necessarily with them. To him, it means just as much. I wish people would ask more questions about T.J. and how autism has presented itself in our daily routine. They would see that it is not much different. T.J. enjoys the same activities as other kids his age like puzzles, books, cartoons, gymnastics, boat rides, and beach trips.”
How has having a child with autism changed their life? Holly responded, “Having a child with autism has given our family a next level understanding of children with special needs. We view the world much differently now. My husband and I have learned that we are T.J.’s voice, his biggest advocate. We struggled with the diagnosis at first. We went through a grieving period for the loss of the child we were “supposed” to have. Why did this happen to our family? Then we had an epiphany: God has a plan! Why not us? We are a capable, loving, supportive, motivated family. We are working to continuously improve our understanding of autism and T.J.’s special needs. T.J. is perfectly placed in our loving home.”
Gregory is officially diagnosed with Autism Spectrum Disorder, Apraxia of Speech, ADHD and Dyslexia. “My husband Matt and I knew Gregory had developmental delays early on. Certainly, by 18 months we knew he was different from other children his age. He was not talking at all and was babbling very little. He didn’t seem to be interested in playing with peers and when he did, it was often aggressive. He was officially diagnosed with Autism at age 3,” explained Katie.
Gregory is on the high functioning end of the Autism Spectrum which in the past has been known as Asperger’s Syndrome. “He is highly intelligent and intellectual. He loves to learn and has amazing memory skills. However, he lacks in many basic social skills.” Understanding social cues that other children his age already pick up on such as recognizing when someone isn’t interested in talking, how to politely end a conversation, what topics to discuss with “strangers” versus someone we know well, or monopolizing conversations with his peers or others about only his interests - back and forth conversation is difficult for him. Katie continued, “He gets fixated on one topic and it’s hard for him to let go or move on both in conversation and hobby. Another example is sarcasm. It’s very difficult for him to understand or recognize sarcasm and often asks sheepishly if he supposed to be laughing at something or not.”
The ability to organize thoughts, start and complete a task, prioritize and stay focused is known as executive functioning skills.
“These skills are non-existent for my child without his medication. Executive Function is one of the biggest challenges for children at all ends of the Autism Spectrum. They need to be constantly reminded either verbally, using a written task list, or hand over hand what to do next. Once his medication begins to work, his mind and body settles and he’s much more capable and amenable to following my verbal instructions. Luckily in our situation, his medication regimen has been so successful he is able to follow directions and stay on task throughout most of the day without help,” explained Katie.
Gregory is 10 years old and attends a mainstream 4th grade at a local private school with no need for modifications or accommodations. Years of speech therapy, occupational therapy, ABA therapy, and most importantly in terms of academics, specialized tutoring for his dyslexia have helped him excell. “He is on the honor roll and absolutely loves his school and teachers. He does have a few friends, peers who are friendly towards him, patient with him, and accept him. On the other hand, because of his rigidity, he sits alone at lunch because he prefers one chair in the entire lunchroom which seems to be the only place he is comfortable enough to eat. He does play alone at times at recess and such but does not seem to be bothered by this fact. I think it bothers me more and I am working on that.”
His ability to attend private school both here and in their previous home in Tallahassee, where he went to a specialized school for his dyslexia, have been aided by the Florida Education Savings Account otherwise known as the Gardiner Scholarship.
I asked Katie what is the biggest misconception people have? “The biggest misconception is definitely that children on the spectrum are dumb, stupid, weird or even sometimes described as that terrible word still thrown around, ‘retarded.’ Therefore they may ostracize him or I fear ignore his skills and gifts that are present just under his different and sometimes difficult surface. I do know my son is far from dumb. In fact he is brilliant! He definitely has social deficits. My husband and I regularly worry and wonder what our child’s future holds. Will he be able to live alone? Be independent? How will he ever get through a job interview?”
How has having a child with autism changed your life? “I can’t think of one area of my life; personal, professional, marriage, parenting, and friendships, anything that having a child on the Autism Spectrum HAS NOT changed. It has been a complete and utter life altering experience I never asked for or believed I would be able to handle. I will never say Autism is a gift or that our family has found purpose in this struggle. That isn’t true. Who wants to see their child suffer and have to work so hard for abilities, skills and experiences that come so naturally to other children? It’s agonizing! BUT now, observing my son at 10 years old, with huge academic accomplishments under his belt, working successfully at making friends, even speaking (something we were told he would never do) I do allow myself to marvel at how far we’ve come despite all the negative to make life enjoyable and dare I say at times peaceful…”