My Son Has Autism: The Hepler Family Shares Their Autism Journey
As April continues so does Autism Awareness Month. Each week I have been trying to share with you amazing stories of kids with Autism. This week's story is no exception. I would like to introduce you to the Hepler Family and their son Ethan.
It’s a boy!
Ethan was born in 2004, at 39 weeks weighing a whopping 5 lbs 4 ounces! He had perfect Apgar score and we went home together when he was three days old.
Everything was fine when he came home as he thrived and was a very content baby. He started to have respiratory problems at six weeks, when he got RSV, followed by ear infections, allergies, asthma, eczema, and digestional problems. We treated these illness as most first time parents would, following the guidance of our pediatrician, and rotating antibiotics to resolve the ear infections and upper respiratory infections. Despite his health problems he was a happy baby and seemed to be on track with his developmental milestones. Ethan played with his toys, started forming words and learned to walk just like any other child. He loved to play with his cars and throw and chase a ball while yelling “BALL”.
When he was 15 months old and behind on his shots due to ongoing ear infections and upper respiratory infections, I received a letter from our daycare provider stating that Ethan could no longer attend until his vaccinations were current. Since he had been sick a lot it was hard to schedule shots since a compromised immune system can cause problems. Being on multiple rounds of antibiotics is not a good time to have shots. He was fever free and between antibiotics when I took him in to receive his MMR, DTP, and varicella vaccinations after consulting with our pediatrician. I reluctantly held my son down as he received four shots. I took him home, gave him Children’s Tylenol (as recommended by our pediatrician) and laid him down. The next morning he was running a temperature and was covered in a rash. I took him into see his pediatrician and she confirmed he had an allergic reaction to one of the vaccinations. I took him home and treated the rash topically and allowed him to rest.
Ethan never was the same…
What’s wrong with our baby?
Over the next 3 months he started to slip away from us. He spent time spinning his trucks wheels or staring at his toys like he didn’t know what to do with them. He stopped interacting with us and lost the few words he had. He quit giving us eye contact and didn’t respond to his name. He became very quiet, withdrawn, and did not seem to care about the world around him. Don’t misunderstand us, we are not one of those parents of an autistic kid that thinks vaccines should be banned. Based on what happened to Ethan, we do know there is a proper time and delivery method to give vaccinations to kids. Never do it with a compromised immune system.
Age 2-3 years:
Fearing he could not hear us and that his speech was affected by his numerous ear infections, we went to see an ENT and he had his tonsils removed and tubes placed. Then we started with a referral to Early Childhood Intervention (ECI) to receive occupational, physical, and speech therapy until he aged out at age 3. After we received the referral to ECI we started seeing Dr. Rolf & Pia Habersang. They completed IgG testing and asked us to remove dairy from his diet. His mood improved, sleep improved, skin and eye allergies cleared, and no more ear infections! We received the results from the blood work and determined that he had the highest allergy to casein (dairy), followed by gluten (wheat). We then started our path on being a GFCF (gluten free/casein free) family.
After about three months of being GFCF Ethan had responded to the changes in his diet. The following areas improved:
• Physical signs of allergies (runny nose, watery eyes, ear infections, and eczema)
• Eye contact
On August 17th, 2007 our lives changed forever. Shane, Ethan, and I went to see Dr.Habersang again to report his progress while on the GFCF diet. Dr. Habersang told us that the information and assessments on Ethan conclude that he had moderate to severe autism with a non-verbal learning disorder. I felt like I had swallowed a softball and I watched all the hopes and dreams I had for him flash in my mind. I know my face was reflected in Shane’s when we squeezed each other’s hands and his eyes were filled with tears that would surely stream down his face if he blinked. Dr. Habersang then said, “He is the same little boy that you both walked in here with today.”
He was right. It took Shane and I a while to grasp that but, Dr. H was right. He was still our little boy; he just had more challenges than we had anticipated. With our road map in hand Shane and I went to work on building a program for Ethan. He could no longer attend his Montessori program because he was unable to toilet train, so I enrolled him in a public school program suggested by our service coordinator at ECI. To my surprise Preschool Programs for Children with Disabilities (PPCD) were only half-day programs. Without adequate child care I had to go from full-time to PRN. Ethan also needed more expensive food, dietary supplements, additional therapy and specialized toys. As you can imagine this financial stress combined with Ethan’s uncertain future caused strain on our marriage. Ethan’s treatment plan consisted of 15 hours of PPCD a week, where he started to communicate with his teacher and us using Picture Exchange Communication (PECS), six hours of speech and occupational therapy a week after PPCD, two hours of hippo therapy a week before PPCD, one hour of aqua therapy a week, and one hour of gymnastics a week. He was also going to ICAM for heavy metal detoxification and management of various homeopathic remedies, including probiotics, digestional enzymes, and methyl b-12 injections. During this time Ethan continued to change and develop. He loved riding the horses, splashing around in the pool, and jumping around with his friends at gymnastics. His first teacher was Miss Kenit and she was wonderful to Ethan. She learned about autism and worked with his team at school and in the community to help ease his transitions and continue to build upon his PECs communication. It was sad for all of us when Ethan aged out of PPCD and left Miss Kenit behind. She invested a lot of time, love, and patience into Ethan. She gave him the foundation he currently uses to communicate, started potty training him, taught him manners, and helped socialize him to the world around him.
It was time for Ethan to enroll in kindergarten but, we were hesitant due to global developmental delays. Shane and I looked at various settings and decided a private school program called Hands on Achievement where he was already receiving outpatient occupational, physical, and speech therapy at Specialized Therapy Services would be the best bet for him. It was a small program; he received all his therapy in a classroom setting between 8:30 – 3pm Monday – Friday. He continued to build on his PECs vocabulary and eventually got an augmentative communication device called a DynaVox . He really likes technology and Shane got him his own touch screen computer with adaptive keyboard and mouse. Soon Ethan was multitasking with his DynaVox, computer, and headphones listening to his favorite soundtracks from Disney movies like Cars and Lady & the Tramp. He had an awesome team at Hands on Achievement that contributed to his academic and social growth. When he was around six years old his teacher Miss Alex told me she thought he could read! He proved he knew his colors, shapes, alphabet, and numbers by using his DynaVox to express himself when Dr. J completed a battery of intelligence tests designed for non-verbal children. He knows so much more than I gave him credit for I thought to myself! He also learned to ride a bike, color, dress himself, and follow simple one step commands.
Ethan is nine years old and attends Amarillo ABA from 8:30am – 3:00pm Monday – Friday. He is a handsome, sweet, happy little boy who communicates using his iPad mini with Proloquo2Go software. He tells us what he wants and we are working on finding out how he feels. Prior to receiving ABA therapy he was very prompt dependent for everything he did. He would not simply initiate something without bringing you his iPad and use your finger to communicate what he wants. He uses and recognizes over 100 pictures universally. Amy and her team at Amarillo ABA have been teaching Ethan to use his iPad for spontaneous conversation and more recently to use the keyboard to spell what he wants. Shane and I are so proud of the progress he has made. We continue to reinforce vocalization and have hope to hear his voice again in the future. He continues to struggle with toilet training due to his digestion issues, also known as “leaky-gut”. Dr. Habersang and ICAM have tried various digestive enzymes, probiotics, and additional diets that focus on specific carbohydrates such as the GAPS diet, with little to no success.
Our dream will always be for Ethan to fully recover and live a normal life however, the reality is that Ethan will probably need assistance for the rest of his life. We are going to enjoy our little boy and celebrate his milestones every step along the way. Shane and I have been involved with putting on the autism walk in Amarillo since it started in 2010. We hope that by sharing Ethan’s story we can contribute to the awareness of autism spectrum disorders and encourage parents to educate themselves before vaccinating a child with a compromised immune system.
“If only my child would speak to me.” Communication is such an important piece when it comes to interacting socially and getting our needs met that these parents fret for their child’s future. So what is a parent to do?
Here are nine things to think about.
1. Set realistic expectations. Accept the fact that your child’s language is non-verbal for now while you strive to teach him/her to communicate verbally. I encourage you to take a deep breath and relax as you ask yourself if you can truly accept the fact that your child is non-verbal at this time. If you can temporarily let go of the expectation for the use of words and focus on the other ways he/she can communicate you may be surprised by the results. Children pick up on our tensions, disappointments and anxieties more than we think and this negative energy can inadvertently set up roadblocks for them. Always shoot for the stars but know you can’t get there in one leap, focus on the baby steps and celebrate them as you go.
2. Motivate your child to use language (with or without words). You need to make your child ‘have to’ and ‘want to’ communicate. Make your child see the value in communicating, and don’t let him/her well meaning older siblings speak for him/her or anticipate his/her needs. The worse thing a parent can do is to enable their child’s muteness by granting their wishes before they attempt to communicate them. Strongly encourage your child show you a picture, sign or gesture of what he/she wants or tell him to say it before you give it to him. The trick is to find the right balance between pushing and helping without causing them too much frustration.
3. Understand that direct teaching is required. The communication challenges that children with ASD face are more complicated than just the development of language. The basic issue is often a lack of understanding that language, verbal or non-verbal, is necessary to communicate with others in the world around you to make things happen. Children who have no developmental delays are typically eager to communicate with others telling them anything and everything but this is not the case for children on the spectrum. What comes naturally for most children has to be taught to a child with ASD in a very structured and explicit manner.
4. Have patience and duplicate therapies. Early intervention is great but things still take time. Pay attention to your child’s therapists, observe and learn what they do then copy it. Maybe your child’s therapists or teachers are using visual pictures or picture schedules to communicate with your child like the Picture Exchange Communication System (PECS). Whatever they are using to get her to communicate, motivate him/her to use the pictures/sign-language/gestures/words at home as well in order to get him/her needs met.
5. Don’t compare! Try hard not to contrast your child to others and remember that there are many ways to communicate. We are so conditioned in our society to expect certain things as typical. If your child were deaf you would be equally upset but you would know there was another way to communicate and would simply teach yourself sign language. It is important to play detective and discover your child’s best way of relating and communicating and use it as a foundation to grow language on. Your child is unique and has his own language, discover what that is and learn it. Once you do that, it will be easier for him to learn your way of communicating in order to join your world.
6. Remember the baby years. Having a non-verbal child is just as frustrating as when you had an infant that couldn’t tell you what he wanted. BUT then again, this is to be expected from an infant. Spend some time pondering how you came to learn and interpret what your baby’s cries were telling you and stay focused on acquiring a similar understanding of your child’s current expressions, grunts, and atypical vocalizations.
7. Think outside the box. Expand your definition of communication. It is important to experiment with other modes of communication and add them to the systems that are already in place – you never know when you will strike gold. Augmentative and Alternative Communication (AAC) devices have been proven to be helpful tools for supplementing and expanding ways for children on the Autism spectrum to communicate but always discuss your plans with your child’s speech therapist first.
8. Document your child’s progress. Maintaining a journal may seem like just one more thing to do but having the ability to go back and read what your child has accomplished in the past six months or year helps. Reflecting back in time is a great way to stay positive and hopeful when you can see the progress that was made.
9. Understand the connection between language and behavior. Children on the spectrum often tantrum because they can’t communicate effectively to get their needs met. Just think how frustrating it would be for you to hear a language that is foreign and then feel pressured to use it before you comprehend its usefulness. This can be extremely frustrating and often leads to heightened anxiety and stress causing behaviors that are sometimes difficult to deal with. Even children with some language ability resort to anger and meltdown when they can’t communicate their needs effectively.
Always remember that there are many ways we communicate – using words is only one of them. Be prepared to find more patience than you think you have and adjust to the possibility that it may take longer than anticipated – BUT remain forever hopeful. I have worked with many parents who worried about never hearing their child’s voice only to be pleasantly surprised even if only by a few words.