Here at Abington Speech Pathology and RemoteSpeech, we are at the forefront speech-language pathology, providing patient-centered treatment. We work with families and caregivers, educators, other healthcare providers and more, to strive for an integrated network of support. Oftentimes, we share our perspective as speech-language pathologists, and from a clinical perspective. For this article, in honor of Autism Awareness Month, we sought a unique approach- the perspective of a mother.
We sat down with our own Clinical Director Jamie Cohen, to gain a unique perspective. Jamie is the mother of Shane, a young man who was diagnosed at age 3 with Autism Spectrum Disorder (ASD).
Jamie shares intimate details about her experience as a parent. Jamie hopes that these insights might provide a relatable experience to parents in her situation. We too, at Abington Speech Pathology, hope that Jamie’s testimony might provide comfort for others that might find themselves in a similar circumstance. Jamie’s courage and candid ways of sharing are certainly something worth celebrating for Autism Awareness Month! We hope that you enjoy Jamie’s story.
TELL US ABOUT YOUR SON’S DIAGNOSIS WITH AUTISM SPECTRUM DISORDER (ASD).
Shane was diagnosed with Austim Spectrum Disorder (ASD) at age three. Actually, his initial diagnosis was “PDD NOS”, (Pervasive Developmental Disorder Not Otherwise Specified), which is a term that is no longer used.
WHAT WERE THE EARLY SIGNS THAT CAUSED YOU TO SEEK HELP?
I worked as a Speech-Language Pathologist for many years before I had children. Shane was my third son. As early as 6 months, I started to notice that Shane’s development was not progressing the way it should. It seemed different than what I had observed with his two older brothers. He wasn’t hitting key “milestones” and the slower development did not seem typical.
He was always an affectionate baby and was engaged with myself and his brothers, so Autism was not really on my radar at that time. And, because this was 18 years ago, Autism wasn’t on the radar of most doctors at the time either.
By the time Shane was 3 years old, the gap between him and his peers was getting bigger and bigger (and my concerns grew just as quickly). Shane wasn’t talking very well and was only using very few words. My husband and I reached out to his pediatrician and asked him what he thought. Shane’s pediatrician suspected Autism, but wasn’t certain, and was not confident in diagnosing him as such. We reached out to a new Doctor’s office that opened near us in California. This new Doctor specialized in developmental delays in children. We had Shane evaluated, and that is when he received his PDD NOS diagnosis. Years later, we moved to Pennsylvania and his neurologist changed his diagnosis to Autism Spectrum Disorder.
HOW DID YOU FEEL WHEN YOU RECEIVED THE DIAGNOSIS FOR ASD?
Our world and dreams for Shane were crushed. We were told that he would never talk, be independent, or have executive functioning. A lot of doctors in those days painted a horrible picture of life for children with Autism Spectrum Disorder. Today, it’s much different. The parents I interact with at my office usually do not get such a “bleak” diagnosis for their child. Parents and therapists are much more knowledgeable and hopeful than they were 18 years ago.
WHAT WAS THE PATH FOR TREATMENT SHANE’S ASD?
Shane started receiving early intervention at 12 months of age. We started with Physical Therapy since he was not yet walking or cruising furniture. Then, because he was not yet using many words, I requested a speech and language evaluation. He started speech therapy at approximately 16 months.
When he received the official diagnosis for Autism around 3 years of age, the initial recommendation was 40 hours of therapy (which included speech therapy, ABA, OT, and PT).
We had Shane evaluated by the school district and he was placed in a language-based preschool. Here, he received speech therapy, OT, PT, and ABA therapy. Privately, we added additional speech and OT. We tried many other things over the years including diet, supplements, music, and Equine-assisted therapy.
HOW LONG DID SHANE’S TREATMENT LAST?
Shane continues to have different therapies to this day. but they look different than when he was little since his needs have changed. Early therapy focused on getting him to talk, walk, learn concepts, etc. Today, therapy focuses on more functional things like identifying important signs and being independent at home. Shane will graduate from the Adult transition program from our home school district and begin an Adult Day Program this June.
PRIOR TO RECEIVING TREATMENT, DID SHANE EXPERIENCE ANY ADDITIONAL CHALLENGES?
Shane was always sweet and easy tempered. But, he was also very quiet and didn’t talk. The fact that he didn’t communicate was difficult.
HOW DID SHANE RESPOND TO TREATMENT?
Shane responded well to treatment. His speech developed slowly over time. Today, he can have a conversation with you. He tells you what he wants, doesn’t like, etc. He is still very quiet compared to his older brothers. We joke that he is a ‘man of few words.’
WHAT WAS THE MOST CHALLENGING CIRCUMSTANCE RELATING TO SHANE’S ASD THAT YOU CAN RECALL?
Based on his diagnosis, it was challenging watching him interact with typical kids. Kids his age were not always receptive to him since communication was his biggest challenge.
WHAT IS THE MOST MEMORABLE MILESTONE YOU CAN RECALL?
The most memorable milestone was hearing Shane say ‘mommy’ and ‘I love you!’ Also, the first time he told a white lie! Telling a white lie requires a skill called executive functioning. My husband and I were so proud of him (but, of course, we had to explain to him that it was not ok to lie to us or anybody).
HOW HAS SHANE’S ASD MOST IMPACTED HIS LIFE?
Shane will never be able to live on his own. He will need to live with us or in a group home his whole life. He will not be able to drive a car. It is likely that he will never hold down a typical job. Although he will never have those experiences, he does & will lead a very fulfilling, happy life. Shane enjoys spending time with family, friends at school and with our dogs.
HOW HAS SHANE’S ASD IMPACTED THE LIFE OF YOUR FAMILY?
We decided early on that our family was going to try to treat Shane just like his brothers, as best we could. He was going to go with us everywhere and try to participate in sports and other activities. Shane was not a lover of sports but loves to draw and dance. He loves superheroes and going to the movies. He’s funny and makes us laugh every day. He also has the sweetest heart and is so kind and loving. Shane is everything that we were told he would never be!
WHAT ADVICE DO YOU HAVE FOR PARENTS, WHO HAVE CHILDREN THAT ENDURE THE SAME CHALLENGES?
I often share my story with the parents we see at the clinic, I tell them that we don’t know how far your child can soar. I tell them that we need to always raise the bar for our kids.
About Jamie Cohen, M.S., CCC-SLP
Speech-Language Pathologist/Clinical Director
Jamie is the clinical director and treating speech-language pathologist at Abington Speech Pathology Services Inc., Laguna Hills Clinic.
Jamie is licensed in the State of California, and is ASHA certified. She earned her Master of Science degree in speech-language pathology from Brooklyn College and has been practicing in the field of speech pathology for over 25 years.
Jamie has extensive experience in various areas of the speech, language and hearing disorders/mechanisms including Apraxia, Articulation, Attention Deficit, Auditory Processing, Augmentative Communication, Developmental Delays, Neurogenic Disorders, and Sensory, Social and Behavioral Deficiencies. Jamie ‘s special interests include treating children with apraxia and autism, as well as working with children from birth-5.
Jamie’s proven clinical experience is a result of working in private schools, public schools, and early intervention settings.
Jamie’s passion for helping others coupled with her enthusiasm for working with young children serves as the foundation of Abington Speech Pathology Services, Inc. Laguna Hills Clinic’s core values and standards. Jamie’s determination and true desire to change the delivery of speech-language therapy into an enjoyable experience for children and their parents has been proven to be successful and is the goal for every child’s treatment program.
Jamie is also a parent of a child on the Autistic Spectrum so she can fully understand how hard it is to be at the beginning of what may seem to be a daunting journey. She has helped many parents work their way through the initial diagnosis and come out on the other side, stronger and full of love for the child that they have been given to parent.
Jamie and her husband have 3 grown sons. When she isn’t working, she enjoys reading, cooking, knitting, shopping and spending time with her family.
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