A Mother and Son's Journey: Over the Rainbow
by Paulina Tavera
I share my story with you to share some insights on our journey through the Autism Spectrum Disorder (ASD) and to give hope and courage to families and children who battle the disparity and loneliness that this journey encompasses.
It is funny how life works to prepare you for things to come. My college degree is a BS in Psychology with a strong emphasis in Child Psychology and Social Interpersonal Skills. I love children and their wholesomeness. I had worked and financed my own college education at Louisiana State University. My junior year, I studied Italian Art, Architecture and Political Science abroad in Italy. After graduation, I joined the working force in the Hospitality Industry. I never went back to school to get my Masters or PhD. For over 10 years, I traveled internationally and domestically working for hotels, resorts and the gaming industry like Hilton, Hyatt and the Atlantis Resort in the Bahamas. I lived in some extraordinary places and met amazing people from all over the world. In 1996 Hyatt Hotels and Resorts awarded me with “Sales Manager of the Year” (Worldwide) and I was nominated again in 1997. In 1999, I changed careers into the Pharmaceutical industry since I needed a less traveling career for my family. It gave me the chance to give back to the medical community that I had connected with through my studies. Thank goodness that I had all of these grand opportunities in my life. Since my journey began with my son, I have not had the ability or the time to do things for myself, for my family, for my friends or the ability to do things like typical families. At present for the first time, I can actually step back to share and appreciate the miracles of this journey.
Many of the accounts are shortened. There are many more facts and traumatic experiences, and yes, even funny experiences that I can laugh about now, but definitely not then. For the purpose of this story, I wanted to share some of the highlights of our journey to help you appreciate the outcomes.
As you read this story, know that we all handle adversity in different ways. There is no right or wrong way. Matthew’s father is a good father and we have tried to the best of our ability to deal with this journey. He has taken every opportunity to be there for his son by driving across states to see him every other weekend and through financial support. No one should ever pass judgment on how people in general and parents perceive or face adversity. One never knows how one will respond until you have been called to “walk the walk” and “travel an unchartered journey.”
Matthew, my son, was born 9 years ago in Orlando, Florida at the Celebration Hospital. It was my lifelong dream to have a family and to be a mom. Even a year before we started planning to have a baby, I took extra care of myself: exercising, taking prenatal vitamins, no coffee, and so on.
I had the best and most wonderful pregnancy… Yes, I am one of those positively happy radiating girls that loved everything about being pregnant always enjoying the good with the uncomfortable.
The most amazing moment in my life was the moment Matthew was born. His eyes were open and his steely blue newborn eyes locked eyes with mine. From that moment, we had an amazing soulful connection and little did I know that this moment marked the beginning of our journey. It was going to be the most difficult, humbling, vulnerable and self- examining journey of our lives.
Matthew was a very happy new born, but he did not sleep… four to five hours max at night. Between breastfeeding for about 9 months and the sleep deprivation, I was noticing little things, but I could not put my finger on it. He had the typical milestones in his infancy: lifting his head, rolling over, crawling. Yet when he was about 6 -8 months old, he could not hold his own bottle. When I took him to a “Mommy and Me” class he did not do the things that the other babies would do and he would not interact with the other babies. I could not take him to the grocery store because he would “go ballistic” or have terrible melt downs. I had to guard his naps and sleep with military timing. He would not sleep in his car seat in the car, but would only nap for short periods of time at home in a dark quiet room. I also noticed that if the sheets were too dark or had too much color it would bring about unrest and melt downs. I had to make sure that only light pastel or white colors were used to help him be more relaxed.
He was a delayed walker. He crawled “tippy toed” and could not stand anything on his feet especially shoes. We took him too many pediatric orthopedists most wanted to do surgery or just let him be this way naturally. Then I found a wonderful orthopedist who wanted to cast him for 9 weeks so we could stretch out his achilles tendons. Every week we had to go back to cut the casts off to recast him as his tendons stretched. It was an utter ordeal because he could not stand the sound of the cutting machine. At 16 months old, he took off across the kitchen floor and began walking.
At home he could not stand the sound of the vacuum cleaner…. Matthew would just “go ballistic”. He would babble the same sounds “Ba Ba” or “Da Da”, but never “Ma Ma”. If I asked him to point or pick up something, he did not understand. He would just sit there with his thumb in his mouth like Maggie, the little baby on the Simpsons cartoon. Pediatricians and other moms would just tell me, “He is fine”, “He is a boy” and “Boys develop and mature much slower.”
Matthew had what I called the “Dr. Jekyll and Mr. Hyde” syndrome. All was fine for a little while and then all terror and hell would break loose for hours. Most families with children on the Spectrum know what I am referring to. It was truly “hell”. People in grocery stores, doctors offices would look and stare judgmentally at me like I was a bad mom and I could not control my child. I even had a police officer approach me at Target once and he asked me to get Matthew and leave. All I needed to get was a gallon of milk. I left feeling helpless and mortified.
The time had come for me to go back to work. Finding a place that could handle him was difficult. Finally, I put Matthew in a Montessori type day school at the age of two years old. His teacher told me that he did not turn around when his name was called. Yet he could hear things like a plane getting ready to fly over before anyone would hear it. He would call out very loudly “Bane Bane” and about 3 minutes later an airplane would go flying over. At this point, he was maybe able to communicate about 10 words total. Still the pediatricians would tell me, he was fine.
The nights were the most terrifying and bewitching. It was “hell”. The bewitching hour would strike at approximately 1:33 am every night. He would scream, throw, hit uncontrollably for about five (5) hours every night. I would try to sing to him, to rock him, to stroke his sweet hair and everything I could think of to soothe this exasperated child. Out of exhaustion, he would finally pass out and fall asleep. I would get an hour or two hours of sleep and off to start the day to bring Matthew to school and get myself to work. I also noticed that the “Dr. Jekyll – Mr. Hyde” day episodes and night terrors were more severe when I tried to go the grocery store, a play date, the doctor, get gas or go run any type of errand. The older he got the stronger and the harder it was to hold him down at night so he would not hurt himself. One night he was such a “wild child” that he tried to break through the glass sliding doors to the pool with his body. I had to hold him down wrapping my legs and body around him with all of my strength, crying, praying, asking God for help, asking anyone for help … to help my son. “Give me his pain, God. I can take it. Just give Matthew peace!” This was always my plea to God.
One night I was so desperate and sleep deprived, I did not know what to do anymore. In a moment of Matthew’s sheer uncontrollable terror and my crying, I started spinning in circles with him. You will not believe it, but he began calming down! Not understanding why, this became my new way to calm him either by spinning or swinging. This cycle of night terrors and sleep deprivation lasted for over 6 years. I think I got my first consecutive two nights of uninterrupted sleep in 2007. Later I would find out why the spinning worked and its importance.
Matthew often just lined things up being Cheerios, cups, shoes, toys, and as he got older it was cars, balls, trains, food cans in the kitchen. He could watch the same show over and over. We spent hours in the pool and he was an active water baby and swimmer. He would get easily frustrated when he could not communicate and throw everything around including the box of Cheerios all over the place. Matthew had sensory and food texture issues; therefore also affecting his nutrition and growth. He had no “fear” and had no innate sense of danger such as the hot stove, cars, knives, scissors, height and so on. He had to be “watched like a hawk” 24 and 7. Matthew did not understand “no” and he was more behaved with other people, but when he felt he was in his Mom’s safety, he would unleash the fury and frustration that was tormenting him. He knew he was safe with me and could release his pent up anxieties. By this point I was emotionally exhausted, spiritually depleted, and my soul was drained. I had totally lost myself: friends did not understand, pediatricians did not understand, even Matthew’s father (my husband at the time) did not understand and was in denial of Matthew’s needs. My husband checked out of our marriage. Matthew was locked in his mind and body. I had to find a way to reach him. I knew he was there by the way he was at times able to connect with me and others.
Matthew’s dad and I tried to work things out. He had been commuting long distance with his job from South Carolina to Florida for the past 3 months. Still in Orlando, FL, I quit my job getting ready for our move to Hilton head, SC then Matthew’s dad was let go from his job. With no insurance, Matthew got sick and I had to take him to the doctor. Having been a pharmaceutical representative, I took him to a pediatrician that knew my story and said that he would see Matthew as cash pay. Matthew had a total melt down at the doctor’s office because he wanted to go outside and play in a beautiful water fountain. His frustration began and in the examining room, Matthew went “ballistic” like a caged animal. The paintings on the wall came crashing down with glass everywhere. The kind pediatrician was lying on the ground holding the door with his body so Matthew could not get out while trying to examine him. In total tears, as I was picking up the broken pieces of glass so no one would get cut, I remember telling the doctor this is what I have been trying to tell everyone about the “Dr. Jekyll – Mr. Hyde” scenes. In distress, I cried and sobbed uncontrollably. I was mortified. The doctor called his nurse and had her bring Matthew outside to the beautiful water fountain to calm him down. He did. The doctor gave me the name and number for the “Early Steps Program” for the State of Florida to set up an appointment for an evaluation.
At this point my marriage had been hitting an all time low of failure. I made the decision that our child needed my undivided attention. That week we had Matthew tested, it was the end of February 2004. They said he was still too young to be fully diagnosed, but he was certainly speech delayed and with developmental delays. He would need Speech, Occupational and Sensory Integration Therapy.
On March 31, 2004 our house was scheduled for the sale and closing. We had nowhere to go, no insurance and for the first time ever, I without a job. I applied for Medicaid for Matthew. Due to his age within 30 days, Matthew was accepted on Medicaid. I found out that there were only 3 other States at that time with the same type of federally government funded Early Intervention Programs that correlated with the state of Florida so his evaluations could transfer over to one of these states. Surprisingly, Louisiana was one of them. I called my elderly parents in Baton Rouge and they took us in with great love and support.
On the late afternoon of March 31, 2004 after the house closed, Matthew and I were on a one-way ticket flying to New Orleans, LA for the next leg of our journey.
In April 2004, Matthew was tested again in Louisiana for the Early Steps Program. My case worker in Florida had contacted my case worker in Louisiana to get Matthew started. Yes, he was eligible for Speech, Occupational, Nutrition, and Sensory Integration Therapy. He was accepted into the Early Steps Program, but he would age out of the program at three (3) years old. We had three amazing therapists that came to my parent’s home about 4 times a week to work with Matthew individually on different days. My mom and I would sit and observe the sessions to learn more on how to help Matthew and to continue his therapy throughout the week. We learned about joint compressions and other inputting stimulus to help calm him down. The neurons in the brain especially for children with sensory issues get backed up or stuck like a traffic jam on the freeway causing the sensory overload meltdowns. When the child gets the vestibular input like jumping, spinning, swinging, crashing, this helps to get the “traffic jam” of neurons going again and helping to reset the sensory overload in the autonomic nervous system (ANS) and allows the brain cortex to register more information.
One day the nutritionist met with me and brought me information about Autism. It was the first time that Autism had ever been mentioned to me by anyone. I read through some of the literature and the outcomes were very limited and depressing. She also told me that if Matthew ever got the diagnosis that I should never let it be written in any of his medical or school records because insurance companies would not pay for the therapies. She had known of too many horror stories of other families that were faced with this. This stuck in my mind.
Matthew’s dad had come to Louisiana to try to work things out once again. Several months later we bought a beautiful home in a great family oriented subdivision near my parents and moved out of my parent’s home. Things were looking up… we all had jobs with insurance, we had a home, my elderly parents in their late 70’s were helping me with Matthew and having the opportunity to be grandparents. It took me four (4) months to find a job. In July 2004, I began working as a Pediatric Sales Representative for one of the best top pharmaceutical and nutrition companies in the US. As I got to know the medical community in Baton Rouge, I became very close with one of the offices and I saw a lot of literature in the office about Autism and Developmental Delays. I made an appointment to see Dr. Charlie Daniel for a consultation.
After sharing all of my information and evaluations about Matthew from his lack of sleep to his limited verbal communications and the “Dr. Jekyll - Mr. Hyde” outbursts, Dr. Daniel said to me in the most loving, positive and reassuring words of hope, “The worst is now over! You now know what “it” is. Matthew is Autistic. Now you can help him.” A rush of emotions came through me ranging from relief, to hope, to desperation to fear …. To ...”what does this truly mean?” The way he told me made the biggest difference in the world. He gave me the strength to find help for Matthew.
Dr. Daniel referred me to a Pediatric Neurologist for a formal diagnosis. Matthew was diagnosed as Speech Delayed with High Functioning Autistic-Like Features. Through some follow up visits ADHD, was also added.
As I researched, read and talked to people about Autism, the prognosis was “doom and gloom”. People did not understand it and some well educated people were fearful of Autism. Most people associated Autism to the movie, Rainman. I stopped reading about the multiple stories of negative outcomes. I knew better! God did not give me this amazing Angel to end up in a home. I relied on my own knowledge and degree of Psychology and Child Development. Knowledge is power! The brain is an amazing and ever connecting vastness of neurons and functions that can be retrained to connect in other areas. Much research has been done on patients with head trauma and injuries where the person cannot walk, talk, has had memory loss or had lost other functions. With therapies such as Speech, Cognitive, Occupational, Physical, the brain can be rewired, retrained and the neurons can begin to fire to help the body gain certain functions. Many people have been through intense therapy and are now able to walk or talk again. The outcomes vary from total recovery to recovery with some limitations. Now I had to find out what therapies and resources are available that would get Matthew to the “Next Level”. Once we reached that “Level”, we would be able to search out other resources and therapies to get him to the “Next Level” and then to the “Next”.
On July 27, 2004, Matthew aged out of the Early Steps Program. He was now 3 years old. Where do we go from here? There was no continuation of resources. Where were we going next for help?
I found out through the State Education Department that I could put Matthew in a Public Pre-School for children with developmental delays. Meanwhile, I was paying out of pocket for his Speech and Occupational Therapy where he was going 4 days a week.
As I was trying to get Matthew in this Public Pre-School and the therapists made their own lengthy and extensive evaluations, I was called into a meeting with a panel of seven (7) therapists and educational professionals. They were going to admit Matthew, but into their Autism program. I was told that Matthew would never be potty trained and would probably eventually have to be put in a home. I told them with all due respect to their qualifications as professionals that I wanted Matthew to go into the Developmentally Delayed program. I saw progress when he was with children that were more typical. He tended to mimic them, physically and verbally (echolalia) and would develop more socially acceptable behaviors then if he were with less functioning children.
The panel was rather insistent that I sign the report. In that moment, I remembered what the Nutritionist had shared with me and what I had studied about Cognitive Development. God gave me a burst of unyielding definitive wisdom, I told them I WOULD NOT. He was diagnosed with Developmental Delays with “Autistic like features” and he was only three (3) years old. He was being condemned from a future without any opportunities or resources to grow. I would NOT sign and would NOT put him in this class. It would be like me accepting defeat before I ever even gave this Angel a chance to develop with the right resources. In my sleep deprived and an “out of character” indignant state of mind, I abruptly got up and walked out. I had no clue where to go from here. About an hour later, the social worker called me back to let me know that the panel had reviewed Matthew’s evaluations and the case I made regarding Matthew’s progress; therefore, they would admit him into the Developmentally Delayed program. Wow!!! God answers prayers.
Within a couple of months, he was potty trained. Thanks to his wonderful caring teacher and the other support staff at the school, this goal became a reality. His teacher thought using a digital communicator would help him. But through Speech at school and the private therapy after school, he learned to say words. He was now at about 25 words total, but yet to still utter the sound “Ma Ma” or “Mommy”. OT was giving me ways to help Matthew at home to get the vestibular “input” that he needed and this would help with his behavior and his super activeness. He never stopped. At the age of 2, he had been given Clonidine to help him slow down and sleep at night. It was a huge help, but giving it to him was another ordeal. It had to be crushed and put in a tiny bit of milk or a bite of ice cream, cool whip or something that he could deal with the texture. He finally learned to swallow pills at 8 years old.
Every Mother’s Dream Come True:
For my new job I had to go away to a 3 week training, home for a couple of weeks and then 2 more additional weeks of training in New Jersey without being able to come home, a total of 5 weeks away from my family. There was great effort in planning to get Matthew to his school, therapies and keep him on track with his routines. I returned home late on a Friday night after my 5th week of training. On Saturday morning as I Iaid on my sofa exhausted and joyfully watching Matthew line up his Thomas the Trains, he began to play somewhat appropriately with the trains. Then all of a sudden, he began screaming and shrieking uncontrollably in pain. As I checked his body, I realized that something was wrong with his knee. If he bent it slightly, it looked like part of his bone was poking out. Matthew’s father rushed us to an Urgent Care where they took x-rays and gave him Demerol to ease his pain. Matthew had an incredible thresh hold for pain and the Demerol was not affecting him. The x-rays revealed that Matthew had a sewing needle or pin lodged into his knee cap. The people who lived in the house before we bought it, sewed quite a bit. As Matthew played on the wood floor, the needle had penetrated through his knee cap. In utter hysterics and pain, we were rushed to the Emergency Room where Matthew had been scheduled for emergency surgery to remove the pin. As the ER nurses were trying to calm down this wild child in pain to take his vitals and put an IV in his hand, Matthew cried out in hysterics “Ma, Ma, Ma, Ma” as he reached out to me for comfort. My soul broke open with utter joy, love, helplessness, compassion and tears! Matthew knew who I was this whole time and he could finally call me “Mama”.
The surgery was a great success! The surgeon took the pin out and he gave it to us in a plastic specimen jar. I still have it to this day. After a few hours, the anesthesia had worn off and we were able to bring him home. Do you know that when we got home, my “little monkey” started jumping up and down on the bed? He behaved as if nothing had happened that day with the surgery and all. Again, I was emotionally drained, but at peace because he could call me “Mama”. It was November 2004 and Matthew was 3 ½ years old. This was a long awaited miracle. This natural and innate acknowledgment many families and especially Mother’s of children with ASD painstakingly wait and pray for.
One Step Forward, Two Steps Back:
Matthew was showing progress. It was always a struggle. He would start learning something, his routine would change or get out of whack and he would regress or “short circuit” back two steps and to suddenly regain control to keep learning and progressing forward. Christmas time was the worst. School would let out for the holidays and his routine would change. Children with ASD do not respond well to interruption of routine. I dreaded the idea of summer. He needed to stay in school all year round. This is a well documented characteristic of the Spectrum. Matthew was approved to have summer school at the Public Pre-School, but I found out that he would be put in the Autistic class. This lasted about a week. Matthew had worked so hard through therapy to “not flap” his arms, to “not chew on his shirt collar”, to “not hit”, to “not hurt himself”, to “express his basic needs” (potty, thirsty, hungry) by either verbally saying it or pointing at picture books. In one week, he began flapping, hitting, throwing, and basically mimicking lots of bad behavior. I pulled him out immediately. With prayer and patience, I was able to place him in a private catholic school summer day care program. Matthew thrived and learned socially acceptable behaviors. Now I was paying out of pocket for the private school too. Public school was no longer an option.
Matthew was admitted into St. Aloysius, my old Catholic School and Church, in Baton Rouge, LA. The principal and I had a sincere and heart- to- heart conversation. I explained my situation. How I truly believed that Matthew would learn more socially acceptable behaviors from his peers in the Pre-K 4 program. We agreed that we would be honest with each other if for any reason that this opportunity was not a good fit for Matthew or the children in his class. Great things were happening! Matthew was learning to swing with other children at recess, to throw rocks like the other little boys, to play in the dirt, to share, to sit down at circle time (in front of the teacher), to sit in Church, to learn about right and wrong, to learn and use the “Fruits of the Spirit”, to begin fitting in. Matthew’s Speech and OT therapists would reach out to the teacher and share some techniques on helping and communicating with Matthew. Soon Matthew began to fall apart chewing on his uniform shirt collar, running off, not following the teachers commands and so forth.
Hurricane Katrina had devastated the New Orleans area and the devastation parlayed into Baton Rouge changing life and the routine of daily functioning for everyone. The Private and the Public schools in Baton Rouge were overflowing with displaced children from Hurricanes Katrina and Rita devastated areas. The last straw came when Matthew ran out of the class and his teacher could not run after him. The teacher’s aide had not yet arrived and she was in turmoil about what to do… Should she leave the classroom filled with twenty plus 4-year olds or chase after a special needs child? Matthew became a safety risk. The only way Matthew could stay at St. Aloysius was if we could get him a paraprofessional or a “Shadow” to follow him and help him with the one-on-one instruction. Matthew’s father and I tried our best to find someone that was available or that we could afford. It would be approximately another $40,000 dollars a year to hire someone to “Shadow”. This would be in addition to the private school tuition, Speech, Group Speech, and Occupational Therapy that we were paying for.
We found a wonderful Montessori School where Matthew thrived and learned through on-hands teaching and a small size classroom with a ratio of 10 children to 2 and sometimes 3 teachers. At the Montessori Children’s House, Matthew learned self-help activities from putting on his own shirt, getting dressed, cleaning up after himself, sweeping, pouring mixing, hand eye coordination, playing with blocks, counting, music, art, science, reading, animals, geography and many life changing opportunities were introduced to him. The teachers were willing to incorporate some of Matthew’s therapist suggestions with vestibular input into the school day. Montessori teaching is based on a child experiencing and learning at their individual pace through tangible experiences through the senses of touch, feel, smell, sound, and taste. Montessori celebrates, embraces and reaches out to empower the children’s individual differences and not their sameness.
Once again, my husband had checked out of the marriage. This time, it was for good. Now it was just Matthew and I in our home. My two good childhood friends and my neighbors were more than willing to help me with Matthew and tried to understand his state of mind. Just to be able to connect and share a social moment with them was a desperately appreciated need on my part. Many afternoons we watched the kids play outside as they would try to engage Matthew in play. They never judged Matthew or me. Many days they were my glue and strength. Although, we could not partake in all of the activities like the other typical kids, Matthew learned to socialize and he learned to enjoy going to a birthday party, but he did not know what to do once he got there, so a meltdown usually ensued. I do not know if they truly realized how much their friendship and understanding meant to me. Even my two closest girlfriends, they tried to understand to the best of their loving ability. We all have boys born about a month apart. The toughest part was when they would share things their boys were doing like T-Ball or going to an LSU Football game. When I shared my joy of Matthew’s accomplishments, they were so basic and minute that is was difficult for them to relate; for example, Matthew had understood and followed a two-step direction: “Matthew go to the table and sit down” or “when he began to understand what is a “happy face” and a “sad face.”
A Defining Decision:
Matthew’s behavior was becoming more unruly and safety was a great concern. I had researched and tried to find ABA therapy for Matthew. Applied Behavioral Analysis is the most costly therapy and the one therapy that has been proven to provide a significant improvement in communication, verbal, social, cognitive and behavioral skills:
The Applied Behavior Analysis (ABA) approach teaches social, motor, and verbal behaviors as well as reasoning skills (1). ABA treatment is especially useful in teaching behaviors to children with autism who may otherwise not "pick up" these behaviors on their own as other children would. The ABA approach can be used by a parent, counselor, or certified behavior analyst.
ABA uses careful behavioral observation and positive reinforcement or prompting to teach each step of a behavior (2). A child’s behavior is reinforced with a reward when he or she performs each of the steps correctly. Undesirable behaviors, or those that interfere with learning and social skills, are watched closely. The goal is to determine what happens to trigger a behavior, and what happens after that behavior that seems to reinforce the behavior. The idea is to remove these triggers and reinforcers from the child’s environment. New reinforcers are then used to teach the child a different behavior in response to the same trigger (3).
Some ASD families I had met had the economic ability and the financial funds to fly in ABA teams from New Jersey, New York, Florida, California, North Carolina to work with their children, to train individual therapist, to work with the families and to turn their home into an ABA experience providing about 40 hours of ABA weekly. ABA is a one-on-one therapy that costs between $30,000 to $40,000 per year or for school tuitions with ABA can run between $16,000 to $25,000 per year. ABA therapy has been shown to be significantly effective when a child is in intense therapy between twenty five (25) hours to forty (40) hours per week. The earlier the therapy is introduced the greater opportunity for positive outcomes. Early intervention is the KEY!!!
At best, the ABA approach can help children with autism lead more independent and socially active lives (12). Research suggests that this positive outcome is more common for children who have received early intervention. This may be due to critical brain development that occurs during the preschool years and can be affected by training (3, 13).
My mind was made up! I was going to invest into Matthew’s therapies as if he were going to college to get an Ivy League education … now at the age of 4 ½ years old. College is not an option. He will go at the age of 5 and again at the age of 18. Our time and window of opportunity was running out. We were already behind in finding out about his Autism and he was coming to the end of his pre-school formative years. This is the most important developmental “window” for early intervention. For months I researched, called, networked wherever I could to find the availability and feasibility for ABA. My friends thought I was crazy that I would move some place without any support or knowing anyone. My parents were my biggest supporters. Through networking, I found out about the only ABA program in South Louisiana (at the time). Dr. Jonathan Knowles from Louisiana State University had a thesis regarding ABA. Through the Baton Rouge Speech and Hearing Foundation and a medical grant, there was a small program with approximately 6 children. There was such a great demand for ABA; they opened up the program to add another class with 6 more children. In general, the thesis consisted of 15 hours of ABA per week in conjunction with Group Speech so the children could put to practice what they were learning individually within a group and social setting. The program was 3 days per week and at the age of six (6) a child was aged out of the program. Through the Grace of God and meeting the right Angels, Matthew was accepted into the program. The Montessori Children’s House made a special exception to let Matthew attend on Tuesdays and Thursdays. On Monday, Wednesday and Friday, Matthew would attend the Baton Rouge Speech and Hearing Foundation. Meanwhile, I was still paying for Matthew’s medications, Speech, OT, private school tuition, extended care, sitters, ABA, Group Speech and trying to hold on to our home that I dearly loved and especially my support system from my accepting neighbors.
The Gamble of My Life
No longer could I make the ends meet and keep the little sanity and common sense I had left for Matthew’s better welfare. In my lonely struggle to make all of the right decisions for Matthew’s better welfare, I had to sell my home on my own through “For Sale By Owner” and moved back into my old room in my parent’s home where I had grown up. Humbling? Numbing? Determined? Yes, the gamble of my family’s life and my son’s future was on.
The Pay Off:
Matthew began to take Adderall for his ADHD. Many people do not agree in giving children this type of medication because it is a type of “speed” and a “controlled” substance. In the first couple of weeks, Matthew’s mind was able to slow down enough to begin gaining new vocabulary and begin putting two words together to express himself. This medication gives Matthew a quality of life that outweighs the risks.
As always, I would sing and speak to Matthew non-stop and answer on his behalf as if he would answer me in a conversation. One week after he started his ABA therapy and routine, we were driving down our neighborhood parkway. As usual, I was talking to him non-stop, and I saw a man walking his golden lab in our subdivision. Then it happened, our first conversation ever with my 5 year old son.
Matthew said, “Look. See man. See doggie.”
I said, “Yes, I see the man walking his doggie. I wonder what the doggie’s name is.”
Holding my car steering wheel so tight and looking through the rearview mirror, I asked Matthew, “Do you know what the doggie’s name is?”
Matthew said, “Uummm, Daisy. Doggie name Daisy”
I asked, “Is Daisy a girl dog or a boy dog?”
Matthew responded very matter of fact, “Girl. Daisy girl.”
Matthew did not say another word. I was frozen in a state of shock as I tried to replay and mentally record our first conversation. I did not know that he knew about gender or names. He had been listening and paying attention to the world this whole time. It was a miracle!
After almost a year and a half into the ABA program, Matthew aged out at the age of 6. Now where do we go?
Matthew was developing a personality with social and verbal communication skills. In addition, he was displaying residual effects from ABA. Every ABA expert I spoke with had only read about this scenario. Most therapists only had experience with the “Early and During Intervention”. Finding someone with this personal knowledge was rather difficult. Our next challenge was getting Matthew to understand a hierarchy of order and respect in life. Essentially, in ABA, the therapist says this is blue. The sky is blue. The child then has to say what the color is, blue, the sky is blue. After much repetition, if the child has tried to answer or answered they get a positive reinforcement such as a reward, i.e. Look at a favorite book, play a game, play with bubbles, play with a certain toy, etc. In Matthew’s situation, he had incorporated this technique in daily interactions. I would tell him, “Matthew it is bath time”. He would respond, “No, you take a bath and then I take a bath.” My motto then became “Break the Will, but not the Spirit”. Now it was time to teach him about respect for authority figures like mom, dad, grand parents, teachers, and so forth.
Matthew was accepted into Trinity Episcopal Day School, one of the most wonderful and elite private schools in Baton Rouge. They knew he was speech delayed, but I dare not breathe to anyone about his Autism because of the lack of social understanding and acceptance. By this time, I would not let my parents or anyone talk about Autism in front of Matthew. I did not want him to use this as an “excuse” or “a crutch” to do less. I knew that Matthew would have to work twice as hard in life to prove himself to others. I did not want Matthew to be treated any differently than anyone else; therefore, no concessions were made on his behalf:
Patience and understanding = Yes
Concessions or to be treated differently = No.
From this point on, Autism was referred to as the “Big A” in front of him. Those who know me well, know that I lovingly refer to it as the “Big A.”
A Personal Perspective of the Spectrum:
Matthew was very interested in music, piano, drums, math, computers, geography, animals, art, science, the human body, languages, swimming, swinging, and so much more. His favorite shows were Thomas the Train, any animal show, and still to this day Clifford the Big Red Dog. Academically, he was developing and learning off the charts. He was my walking birthdates’ calendar. He would ask everyone he met when their birthday is and he would remember. Socially, he connected much better with older kids and adults and had issues relating with his own peer group. He started to show signs of depression. It was time for Social Skills classes. Matthew was on a waiting - list for a social skills class for over a year. It never developed.
It’s Bigger and Better in Texas:
After four (4) years of being divorced and being Matthew’s sole voice and advocate, I was reconnected with Mark, an old high school classmate from Baton Rouge High Magnet School, a school of the Arts, Humanities and Sciences. I love to say that I met him as a boy (from about 14 years old to 18 years old), and 25 years later, he finally asked me out. I have gotten to know him as a man: a wonderful man and father. Mark never blinked an eye or was phased by Matthew’s situation. Mark is lovingly inquisitive and willing to navigate the unchartered waters with me on how to help Matthew get to the “Next Level”. Through our long distance dating and many visits to Austin, I visited with the elementary school that corresponded to Mark’s home. They had an amazing understanding, resources and staff on campus that would be able to work with Matthew in class without pulling him out or signaling him as different. He was evaluated and approved for Speech, OT, Social Skills and ABA/Transition Therapy It was the blessing Matthew needed! Mark and I decided that Matthew and I would move to Austin, TX so we could give Matthew this opportunity as he entered the second grade. Meanwhile we would work on figuring out our future with our boys and eventually becoming a blended family. Mark’s sons have been such a guiding light and an inspiration for Matthew. They are willing to explore these unchartered waters as a family. Matthew does not feel like a lonely only child. He finally has two big brothers he adores and looks up to.
In the beginning of Matthew’s third grade school year, he was released from Speech and OT which is almost unheard of to be released from two (2) therapies at one time. This was due to his significant and amazing progress. Matthew is in a typical classroom with inclusive kids. He has friends and play dates. He faces the same social drama with his own peer group. Academically, he has an amazing ability to learn and earn the grades. Socially, he can be awkward, but mostly with his own peer group. He wants friends to play with him at recess. He gets lonely and I have to remind him that he needs to reach out too to ask. Friendships are a two-way street. He has a much better rapport with younger children, older kids and adults. He loves dogs and all animals. He can carry very interesting conversations with many revealing facts. Many times people question his facts, but upon “Googling” the topic usually we end up learning many new facts and truths that Matthew has already learned. He has an amazing aptitude for geography, maps, math, numbers, spelling, animals and finding out unique facts. His heart is wholesome and tender. He strives to understand, to be understood and to fit in. In a moment of frustration, he tries to speak up and to state his case, his voice will tremble and his lips will quiver, but he has tremendous strength and courage. He has great manners using “please” and “thank you”. He continues to try to learn when to say “yes, sir”, “yes, ma’am” or “no, sir”, “no, ma’am”. There are many social rules that are unspoken and he works hard to maneuver and fit in. He gets depressed and very sad at times which breaks my heart. Many children and families do care, but by the other side of the same coin, there are some whom show no compassion or willingness to understand or reach out. Matthew feels it and wants no part of that. What is scary is that “1 in 100” Children are on the Spectrum.
At times Matthew continues to argue mostly with me, his Mom, about the things I direct him to do like clean up your room, help unload the dishwasher, put the dirty clothes in the hamper, do your homework, etc. He even likes a girl in his class. He loves football and has his favorite teams. He loves basketball even more and is a phenom shooter. Unfortunately, he lacks the self confidence in team sports, but that is our next step to get him some private coaching lessons to build up his self esteem and develop leadership skills. He would love the UT or San Antonio Spurs coach. He watches all of their games. Our goal is to get him involved in a basketball camp this summer. We also role play with him to understand the emotional side of what is a friend and to put himself in their shoes how would they feel about situations. I am very proud of Matthew! I tease him all the time that one day he will be a successful business man like Mr. Bill Gates or Mr. Donald Trump. Matthew will let you know exactly where you stand and why. If he does not like the way things are going, he will dismiss you and “you are fired”. He will look at my weekly work production reports and analyses them within seconds to let me know who is doing what and why. He is usually on the mark. Today upon meeting him, most people do not realize he is on the Spectrum or they do not believe where he came from on the Spectrum. When we left Baton Rouge, Matthew’s long standing Speech therapist of 6 years said that she was honored to have been part of this transformation. She had read about it and studied it in theory, but to actually be a part of the grueling work and dedicated efforts was a testament to the positive results of Early Intervention.
My Biggest Fear:
Since I have been working on Imagine A Way, Matthew hears me talking. He asked me the other day what is Autism. I answered him honestly and I told him if he ever meets friends at school that are a little different socially and others may not understand them, he needs to be a true friend by standing up for them and helping them to guide them in school. I am dreading the day he asks me if he is on the Spectrum and why he is different? I am praying for the right words to come at that devastatingly truthful moment. I know that he feels different from the other boys at school.
Imagine A Way:
About a year ago, I met Joel and Carolyn Price through Mark. When we met we knew each of us had a story to tell, but most importantly we needed to help other families and children on the Spectrum to get them to the “Next Level.. The Prices had a vision to help other ASD families and to not let children fall through the cracks because of lack of funds or resources. Imagine A Way is trying to help one child at a time and more if we can get the funds.
It does not have to be “doom and gloom.” The reality is, there is painstaking work that each child and family must do. As parents we have to be their vocal advocates and it is impossible to do it all on our own. It truly does “take a village to raise a child” and even more with these Angels. I have to wonder what more Matthew would have progressed to get to the “Next Level” had we had “Imagine A Way.”
I paid with the loss of a marriage, my home, my own memory, sleep deprivation, my hospitality career, my love to socialize, to travel, to dance, and my self-esteem. It was a high moral, physical, spiritual and emotional price to pay. I do not wish it on anyone.
For the first time in many years, I find myself in a place that I can give back to the community to help families starting out on their own ASD journey: over the Rainbow, over the Spectrum. The basic core therapies of Speech, Occupational, Physical, Sensory Integration and some instances Pharmaceutical are all essential to the positive outcomes to help these children on the Spectrum from Autism, to Aspergers to ADHD. As a community and as a society, we all must take ownership in these children’s futures to function independently, socially active and happy lives.
If there is one thing you can take away from Matthew’s true medically documented story, it is…
Early Intervention is the KEY and this is how WE begin to IMAGINE A WAY.