Raising My Autistic Child: A Journey
Understanding Autism in Children: A Mom's Story and Perspective
Parenthood and Autism: The Realizations
Parenthood is a beautiful, yet bumpy journey. It is filled with both dismay and reward. Some of us have bumpier rides and have to take alternate routes at times. However, it is still a journey and it is personalized for each of us.
When we drive, we are obviously on a voyage towards a destination. Whenever we run across a detour we simply use our resources to get around them. The question is, what if there are no real resources? This is what I was faced with in the initial years of my son's development. My son was born in 1998 and autism was just barely starting to filter into mainstream media. Although autism was starting to buzz in pediatric offices and journals, parents were faced with unanswered questions as opposed to trustworthy concrete answers, therapies and medical support. Insurance was and still is the other issue. It is very difficult to find true coverage for any autism related services if you are above the poverty level and out of pocket services are costly.
The first major roadblock is the realization that there is no real cure for autism. Not only has a true cure not been identified, science has not officially pinpointed an absolute cause, an exasperating realization for any parent. Sure there are gluten free diets and mercury reducing therapies, but autism is not a cookie cutter type disability and neither are the treatments. These therapies might reduce the symptoms for some, but not all. So, whom do you turn to? For me, it was the Internet and boy did I surf for answers. And I found many other parents seeking as well. We looked to those that had traveled ahead of us and relied on their experiences, trials and errors.
Writing the series ahead has not been an easy task for me and it is far from finished. My journey will continue past the text in these hubs and I hope to share in that continued journey as long as possible. The development of this series has rekindled many memories of sadness, anxiety and depression. The developmental years are especially challenging, but calluses grow and so does our determination and empathy. Nobody in his or her right sympathetic mind would want any child or parent to face any type of conflict or disability. Life is cruel enough as it is. However, it is what it is and we must look forward as we learn from our past. I pray the forthcoming series helps enlighten those who are entering a mutual path of guiding their children through the rigors of autism. Remember, you are not alone and knowledge truly is powerful. Pace yourselves in your journey and realize that you are in it for the long haul.
Pregnancy and The Early Signs of Autism
Baseballs and Baby Blue Booties
When a mother hears the news that she will be blessed with another child her heart and mind instantly race with thoughts of wonder, hopes and dreams. We immediately begin picturing relationships and scenarios that the future would hold. We were overjoyed when we learned he was a boy. My maternal inquisitive mind raced, not unlike many others... What will my child look like...act like? How will he treat me and in which ways will he make me proud? Will the baby really be a boy this time? One my husband can connect with? I can already see them playing baseball together, joking and teasing me. Will he be a loving brother, or one that makes dating difficult? Will my children be close and share a loving relationship through adulthood? Most moms know what I am talking about. We imagine all of these wonderful scenarios, such a magical part of pregnancy.
It is a beautiful part of pregnancy to dream the future of the child one holds and nurtures within. The anticipation of birth is an important part of the bond prior to the arrival of one's child. When your bundle of joy arrives you finally get to delve into those eyes, count fingers and toes and identify similarities and characteristics within one's family. Your mutual journey with your child begins...
Celebrations and Question marks...
Antonio III arrives...
Tony was an August baby, he arrived through a normal full-term delivery and nothing was odd or different about him in any way. He was beautiful, he was perfect and he was ours. He developed normally and went through all the same developmental stages his sister had. But the closer he got to 12 months I began to notice his subtle tendency to be slightly despondent and agitated when things didn't quite work out. He hardly played with me and seemed more interested in whatever item he was fixated on as opposed to his silly mommy's gestures and sounds. Eye contact and giggling were still present, but it seemed like I couldn't maintain his attention for an extended period. Also, his sister had walked a week before her first birthday and he walked slightly after 13 months. I simply dismissed these subtle flags as character traits. After all, every child is different. Plus, I had read somewhere that boys develop differently than girls.
Little did I know our lives would soon be changed forever...
Chapter 1 - Mourning the Living...
Where does a mother begin describing her journey, one traveled on a speed bump filled road, cracked with heartbreak, hope, defeat, success and the need to advocate. Perhaps the best way to begin would be with the startling words that led me across the threshold of despair, into one of hope and perseverance.
There came a voice, I heard it and it was clear as day, it was firm and declarative..."Mourn the child you thought you were going to have."
Mourn? Yes, mourn. I had to mourn the loss of a living child. Think about that for a minute. It's a hefty and jagged pill to swallow, but if I wallowed in what I did NOT have how was I going to nurture what I did have? So, I screamed, I cried and I lay slumped in my shower and as I watched my grief stream down the drain I began to realize that I had to be my son's biggest advocate. I could not wait for autism research to meet his needs. I needed to help him....now.
Chapter 2 - Mapping Our Future…
A Jump Forward
My son is 16 now. He was diagnosed with PDD-Autism-NOS at the age of five. I on the other hand knew he had autism shortly after his first birthday. Call it mother’s intuition if you will, but most moms just know when something isn't right. As a parent I have dealt with severe and violent head banging tantrums, developmental delays, odd behaviors, a mix of teachers, frustrating ARDS, IEP’s, dismissive pediatricians, reluctant diagnosticians and more. I took to the Internet early on and researched anything and everything related to autism. I even ended up with 18 hours of special ed. college courses and became certified. Not necessarily to teach in that realm, but to understand their perspective and to apply my knowledge with my own son.
A Retrospective, Back to the Beginning
Analysis begins with questioning. I've always been somewhat naturally inquisitive. Motherhood only enhanced my need to answer my inquiries. It was becoming more and more evident to me that something was very wrong with my son. Everyone disagreed with me...EVERYONE. I was constantly evaluating myself and wondered if I was being overly concerned. It was almost as if they brushed off my concerns and ignored my questions. I needed acknowledgment from those around me that they where witnessing the same things. Nothing...I got nothing and I was beginning to feel very alone and confused.
Eventually others began to agree. This was not without elders stating my son needed discipline and a swift spanking. However, I found my defense and advocacy through Isabel. Isabel is my first cousin and she had moved in with us about one month before Tony's birth. The idea was for her to live with us as Tony's nanny for at least 3 yrs. None of us had realized what was truly in-store for us. God is truly a master planner. Needless to say, we were blessed to have her as Tony's live in nanny for close to 11 yrs. Tony would not be where he is today without the love, guidance and support Isabel provided Tony as well as for our immediate family. Isabel was steadfast with Tony's needs and yanked me up whenever I slumped. She was Tony's living guardian angel and quite frankly one for me as well. Needless to say, Isabel and I faced constant questioning from family members. Questions from family members were addressed to her because they didn't want to approach me directly (we don't want to offend the mom right?). Others suggested that she and I were confusing my son in regard to a maternal role model. I know our family members meant well, but it led to quite a bit of questioning and hurt feelings. Fortunately, Isabel and I had a steadfast strong bond and a unwavering determination in helping and guiding Tony through the rough spots. I truly love Isabel as the sister I never had and we are also blessed to have her as a Godmother to both of our children. The love, patience, tears and perseverance she displayed towards Tony those 11 years is undeniable.
Mama finds momentum
Those of you that are moms will understand this next segment. Whenever we have a newborn it is almost as if we become one with our baby. We learn to anticipate their needs before they cry. We become a living clock for feeding, carrying, changing and bathing. We develop little cues so our little one will know what we are up to. This is what a mother of a child of autism HAS to continue to do if they want to stay ahead of autism symptoms. You have to anticipate what your child is going to need or expect. Yes, you have to become a mind reader of sorts. I know, not exactly an easy task, but you need to train yourself to identify the antecedents that provoke tantrums and distress. You need to stay ahead of the game if you want to gain progress. Learn your child's expectations, study them and sincerely try to understand their point of view. Perspective is everything - theirs NOT yours. The hard part is getting over the power struggle. If you have the type of attitude that states, "You will sit when I say so" then you are up for a steep uphill battle. Now before you throw your hands up in the air I want you to consider something. Once you begin to effectively analyze your child's needs you can then begin to develop control and expectations for your child.
Let's look at this from a different perspective. If an elderly person such as your grandmother wanted something would you do everything in your power to make that happen? If a 4-month-old baby needs a teething ring would you deny them their source of comfort? We need to learn to respect and honor the things that other humans need and expect, within reason of course. Once you learn what comforts them you can begin preparing a plan for reward. Cause and effect is EVERYTHING when it comes to autism. Something causes their behavior and it is usually something that they expected to happen. The main idea here is this. If you begin to thoroughly understand what your child expects you can then begin to set up an effective pattern. Eventually you will learn the art of bargaining. Plain and simple - you want this? You have to do this first. I'll show you how I did this in another chapter. Essentially though - this is what is going to help you develop communication, expectations and overall development within your child. You need to find what they like and what soothes them. This will be the key for you to move forward.
Chapter 3 - A Bumpy Journey: Then and Now
As Tony entered his toddler years it became undeniable to me that he was in the spectrum. These are the events we encounter followed by where he stands today...
Is he deaf? We actually believed he was possibly deaf. He was a master at ignoring us. A hearing test proved otherwise. This made me realize he was being selective in his hearing and chose to go into his “zone” and block us out. Why? This was the question and breaking the “sound barrier” was my challenge. Tickling was my weapon - he still loves being tickled to this day. "Tickle again" was one of his first words after he had lost his initial speech.
Does he “see” me? The lack of eye contact was heartbreaking. He looked past us, through us, yet I needed to gain visual feedback. I wanted to delve into his eyes and “see” what he was thinking, feeling, questioning. I made constant quick and goofy gestures at him and would tell him, “I know you see me” in silly and animated voices. One day, he finally cracked a smile, looked at me, touched my mouth and wandered off. A breakthrough that left me in tears of rolling hope. He looks right at me now and even gestures to me. Now he is the one making faces and gestures at me to make me laugh – it’s an incredible milestone. There are times when he does revert to his lost upward angled gaze. These moments usually occur during times of stress, frustration or a long and challenging school day. It also emerges when he plays on the swings, scooter or bike. However, this particular gaze now includes a subtle but gentle smile. We are very blessed to have a happy and patient child. Yes, patient.
Power struggles – He had an incredible stubbornness as a toddler. His fantastic elementary special ed. teacher worked rigorously with him by applying schedules, rewards and custom made picture books. She was very animated, fun and the fact that she was pretty didn't hurt a bit at all. Tony was enthralled and quickly adapted to her schedules and rewards. Her efforts and passion are forever embedded in our hearts. He actually accepts changes in plans now. As a toddler, changes would result in anguishing and violent 3 hr tantrums that would challenge anyone’s sanity and health. I worked diligently and methodically at reducing these tantrums (I'll touch on tantrums a bit later).
Patterns and Possessions – Tony would create and display obsessive pattern creations. Toys and objects were grouped by size, color and shape. If one was removed he knew EXACTLY which one was missing. At the age of three he had a large collection of Hot Wheels. He would line the entire edge of the kitchen counters with them. This collection was over 50 pieces and he would place them in the EXACT order every time he set up his convoy. If I removed a car, he KNEW exactly which one was missing. Not simply because there was an obvious gap - he would specify by saying, "where is yellow car?" He still has an incredible memory. He still creates patterns and groups today, but he is not as obsessed about it. However, I did go outside to check on him on a recent Saturday and he had lined up all of his stuffed animals by size on the trunk of my car. He said they wanted to watch him ride his bike.
Master Puzzle Solver – He is a master at jigsaw puzzles and completes them with incredible determination, precision and speed. His love of puzzles was evident at an early age. Now, at 13 he loves his Lego kits. He takes them apart and pieces them together on a regular basis. He does this rather quickly despite the tedious detail. Also, once he begins a puzzle he will not stop until it is completed.
Fixations – He has a fixation of fans and vacuums. This began by age 2. We could not leave a room until the ceiling fan came to a complete stop. At 13, he takes vacuums apart and puts them back together again for fun. He is in charge of vacuuming and is VERY good at it. He truly loves this responsibility and I must admit, so do I! If we go to a store that sells vacuums he must check them out. It is what it is. He has already picked one out for Christmas. Yes, we have a LARGE collection of vacuums. He can tell you the brands and their respective features. He doesn't communicate as well as someone with Asperger’s does, but he becomes enthralled when showing off his collection. His favorite hobby is watching vacuum videos on YouTube. You’d be surprised to see how many there actually are. Apparently it is not an uncommon fixation.
Covering ears – At about 2 he began to cover his ears on a regular basis. Loud over stimulating places provoked a tantrum. He still covers his ears today, but I bought shooting range ear protectors. He puts them on in loud restaurants, the school gym and cafeteria. This technique and strategy has been a Godsend and I highly recommend it. My husband and I each keep a pair in our cars. He has an extra pair at school and keeps another pair in his backpack. Most people seem to believe he is listening to music. Incidentally, if we have a thunderstorm he puts on the iPod headphones on first and then covers those with his headphones. Smart kid.
Tantrums - Tony would have the most heart-wrenching and violent tantrums. These tantrums were a true test for all of us. These finally stopped at the age of 8. I will be doing a chapter dedicated to tantrums with the steps I took to reducing them - one at a time. I am still amazed today that his severe tantrums have stopped. In fact he does not tantrum or even scream today.
Loss of speech - Tony's language developed slowly and then stopped at about 14 months. He then slowly began developing language again at 3-4, stopped, and then continued again at age 5. I will dedicate a chapter on speech development later on in this series.
Echolalia during the toddler years. He would repeat everything - verbatim. He would repeat immediate speech as well as quote entire conversations from the past. He hardly does this anymore. However, I do catch him talking to himself and when I question him he gets flustered and denies it. (Echolalia gets its term from the word echo. Children with autism are known to repeat. For example, I would ask Tony, "Do you want milk?" and he would immediately repeat "Do you want milk?" Not only would he repeat it he would say it with the exact same tone and rhythm.)
Memorization - Tony memorized movie scenes from videos in English, Spanish and French. He self-taught himself to adjust the languages with the remote control at the age of 4. He is still obsessive with movies and if he enjoys a scene he will repeat the scene incessantly.
Physical attributes/athleticism - Tony would shoot perfect robotic basketball "nothing but net" shots - one after another. (I regret not having filmed this.) This was also at the age of 4. He still loves basketball and has pretty good precision shots, but struggles with dribbling while running. He also plays baseball and rides a scooter and his bike. Although Tony is assigned to the Life Skills Special Ed. unit in middle school he attends regular P.E. class.
Imitates Speech - Tony is quite good at imitating speech patterns and tones of family members. Impersonations are dead on. He started doing this at about 3. He is especially good at accents that various family members and teachers have. We live in South Texas and we have a high population of Spanish speakers. Incidentally, he is bilingual in Spanish and English. Therefore, he imitates a Spanish speaker speaking in English and vice versa.
Solitude - Tony likes his space and prefers solitary play. He hardly ever socialized as a toddler, but he enjoyed being in the same room. He has become more social today, but spends the majority of his free time alone. However, many are surprised that he can be a little clown when he wants to be. He enjoys making others laugh and has been caught making faces in classroom windows. Mind you - he attends the same school I teach at. This makes for very interesting conversations.
This series is to be continued...
Autism Resources and Organizations
I'd like to thank autismkey.org for providing the following list of resources
US Autism and Asperger Association (USAAA)
USAAA provides education, research, support, and solutions through conferences, newsletters, and resources. www.usautism.org - 888-9AUTISM
Autism Treatment Center of America – Son-Rise Program
Innovative training programs for parents and professionals caring for children challenged by Autism, Autism Spectrum Disorders, Pervasive Developmental Disorder (PDD) and other developmental difficulties. www.autismtreatmentcenter.org - 1-413-229-8063
Center for Autism and Related Disorders (CARD)
Is among the world’s largest and most experienced organizations effectively treating children with autism and related disorders. www.centerforautism.com - 818-345-2345
Autism Society of America
Provides information, education, supporting research, programs, and services for the autism community. www.autism-society.org - 800-3AUTISM
The National Fragile X Foundation
Uniting the Fragile X community to enrich lives through educational and emotional support, public and professional awareness, and advance research toward improved treatments and a cure. www.fragilex.org - 1-800-688-8765
Questions & Answers
© 2011 Marisa Hammond Olivares