Autism is a Spectrum Disorder: Every Child will be at a Unique Point on the Spectrum
“It is stunning really to have a Day/Month dedicated to your daily struggle.”
April is World Autism Awareness Month. It is a month-long campaign dedicated to raising awareness about the high rate of Autism Spectrum Disorder (ASD) and explaining how everyone can get involved to encourage early intervention and more funding. In addition to the educational value of this month long awareness campaign, it is also an opportunity to support all parents raising an autistic child. The uniqueness of each individual with ASD makes the journey for each child and family different.
Along with my desire to get involved in this ASD awareness campaign, I want to express my love, support and hope for children and parent’s of children with autism by sharing my personal conversation with Leslie Williams, my dearest friend. Leslie is a mother of three beautiful children—Hannah, Jake, and Noah.
Here is a snapshot of how Autism has impacted Leslie’s family, and the ongoing journey with her 4-year old son, Noah.
Denise: To start, what are your thoughts and feelings surrounding “World Autistic Awareness Day/Month?”
Leslie: It is stunning really to have a Day/Month dedicated to your daily struggle. Autism is unique in that there are no two kids with the same behaviors or the same limitations. Noah, like many other kids has sensory processing issues as well.
“Sensory processing (sometimes called “sensory integration” or SI) is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.” http://www.spdfoundation.net/about-sensory-processing-disorder.html
This makes errands, soccer games, church, and any event where there is a crowd, stressful for him. I think that would be the one thing to stress– for the public to appreciate what these kids struggle with and to better understand when they have a neurological meltdown or don’t respond as expected. For example, a person with SPD (Sensory Processing Disorder) finds it difficult to process and act upon information received through various senses, which creates challenges in performing countless everyday tasks. Like when strangers approach Noah; he isn’t going to engage in a conversation. He can’t answer the, “How old are you little boy?” question directed at him, and as he gets older, these situations get even more difficult.
It’s difficult to explain a neurological deficiency. So, hopefully, the more awareness and understanding there is at large, perhaps the easier it will be to function in everyday situations.
Denise: Having two children prior to Noah, do you think there were mother instincts/wisdom in your early questions about Noah’s development?
Leslie: No. Noah met every milestone and developmental marker until 18 months. He made eye contact, he laughed, and he had language. After about 18 months he slowly lost these abilities. Sadly, it kept coming back to, he is the third child and we are all catering to him. He will be fine. He knows the alphabet; he will talk when he wants to.
Brian, my husband, was the first to pick up on it. Since I was with him all day, I think I was too close to the situation and didn’t see how far he had regressed. I didn’t know Autism could work that way. Since I was home with him I didn’t have any outside caregivers to raise any red flags. I think if Noah had been in a daycare situation it would have been clearer that he was falling behind. In fact, it was our effort to have him participate in our local Mothers Day Out program that indicated he couldn’t function with a group of eleven other almost 3 year olds. His behavioral issues became glaring at that point. He wasn’t able to sit in a small group, he didn’t listen to instruction, and he couldn’t walk in a line from the classroom to the playground—all very simple, intuitive tasks for typical kids.
Denise: I remember you sharing your disappointment and frustration in seeking the right path for Noah once he was diagnosed. I know it took a lot of time, observation and trial and error. What route did your path take you?
Leslie: The journey from diagnosis to finding therapy for him was long and frustrating. It takes months to first rule out any vision or hearing issues that may be the source of the issues. Then, you have to find a psychologist to diagnose your child. As soon as he turned 3, we began the process of getting him enrolled into the developmental delayed public pre-school (DD Pre-K) program in our hometown of Norman, Oklahoma.
I have to say, the speech therapist and the teacher at the school were my first support system. Both were first year teachers, which is remarkable to me when I reflect on their wisdom. The school’s speech therapist got me an assessment with special services and it was decided for the next school year Noah would transfer to an autism program in a different school. Slowly I worked out private speech therapy and occupational therapy for Noah.
Recently we have had to also add food therapy because of his severe aversion to food. Noah’s speech therapist, Sarah Baker (owner of the Baker Speech Clinic in Oklahoma City) attended training so we wouldn’t have to find yet another specialist to treat his food issues. When she offered to attend the training, which meant driving from Oklahoma City to Tennessee for a four-day seminar, I remember thinking what a blessing it was to have finally found a dedicated health professional. I felt I had finally found my ally in helping me steer Noah’s treatment.
I did expect more guidance and involvement from Noah’s pediatrician. But instead, I got lucky in finding the best person for his speech therapy through a referral from another mom in Noah’s first DD Pre-K.
Denise: What does a typical day of preschool look like for Noah?
Leslie: Currently his public pre-school is priceless. (The private options for school don’t exist in our town. The closest school offering ABA therapy (specific therapy for Autistic children) is 30 miles away and $20,000 a year.) Noah’s DD Pre-K is five days, three hours a day at the public school. His class is small and he functions well in circle time and walking through the halls, etc.. All of his teachers do such a wonderful job of encouraging and motivating him.
Noah’s one-to-one time spent in Speech Therapy and Occupational Therapy at his public DD Pre-K School is limited; therefore, Noah also has additional private appointments after school. While at OT, after school, he primarily works on listening therapy developed by Sheila Frick and Jean Ayres. (www.sensationalkidsot.com.au.therapeuticlistening.htm) He then has additional Speech Therapy with Sarah Baker on other days, along with the above mentioned food therapy (S.O.S. therapy developed by Kay Toomey, Ph.D.) once a week. Some days are long and exhausting, and do not feel very “typical.”
The weekends are more relaxing. We have fun on the trampoline and play-set outside working on motor skills. In the summer, Noah “swims” everyday. I read another mom’s comment that she loved to watch her Autistic daughters swim because they appeared typical. This is true for Noah.
Hannah, Jake and Noah
Denise: What does a typical day or week look like for your family? What can all parents take away from your experiences?
Leslie: I am not sure the average person knows what Autism really means for a family. I have a typical 14-year old daughter, and a 9-year old son who are very active in sports, music and school functions. And I have a typical husband who works many hours away from home. As I mentioned, there are a lot of appointments, as well as different schedules and individual needs. In addition to all that, I work with Noah a lot at home in order to reinforce all of the skills his teachers and therapists are working so hard with him to perfect.
Initially, our daily communication focused around using the PECs (Picture Exchange Communication) method. It puts communication in picture form and allows the child to show you a picture when they are unable to say the words. Slowly, Noah has been able to verbalize more and we don’t need the pictures as often for simple communication. It is helpful to keep our pictures handy for morning and evening schedules. I also use them for introducing something new, i.e. potty training.
I push him as much as he will allow everyday. We are currently working on potty training for the 4th time, and how to recognize a question and answer it. He is currently learning to answer, “Yes” or “No.” It’s that basic, it requires a lot of energy and diligence.
It took almost a year to say, “My son has Autism.” It is a life-changing diagnosis. No one can tell you how far he can go, how he will interact with his family, how much language he will develop…. Every morning when I wake his beautiful face up, I say a silent prayer for him to say, “Good morning momma.”
I have no limitations set for Noah. I push him at every turn. I expect success. It’s so rewarding to see his progress. For example, when he doesn’t just echo what you say, but has his own words to express himself! Hope carries me through the rough days.
I am not sure what parents can learn from my personal experience… always HOPE, learn ways to work with your child, read books that attempt to answer your questions, and utilize other people’s wisdom… these things have helped me on this journey.
I worry for Noah every day. I pray each situation isn’t too stressful for him. And, there doesn’t seem to be enough time to call friends I should. I want them to know, I appreciate when they do call.
For more information about Autism and how to get a free copy of The Autism Speaks 100 Day Kit, click here.