154. Early Childhood Orientation and Mobility for CVI and Multiple Disabilities with Michaela Smith
Topics:
cerebral visual impairment, cerebral palsy, early intervention, independence, cane, multiple disabilities, early childhood, orientation, mobility, specialists, visual impairment, inclusivity, special education, parental involvement, pediatric visual impairment
Embarking on the journey of early childhood development is akin to setting sail on an uncharted sea. For children with Cortical Visual Impairment (CVI) and multiple disabilities, navigating this vast ocean of learning experiences can be particularly challenging. In the realm of visual impairment, the significance of early intervention cannot be overstated, and one critical aspect of this journey is the development of Orientation and Mobility skills. In this enlightening blog post, we delve into the intricacies of Early Childhood Orientation and Mobility, guided by the expertise and passion of none other than Michaela Smith.
Imagine sitting down with someone who, inspired by her child's Orientation and Mobility (O&M) specialist, took it upon herself to become one. This is not just a story; it's a profound testament to the transformative power of empathy, understanding, and the ripple effect of inspiration.
In this captivating blog post, we dive into the remarkable story of Michaela Smith, a dedicated mother turned O&M specialist whose journey is a beacon of hope for families navigating the complexities of Cortical Visual Impairment (CVI) and multiple disabilities. Michaela's story is a testament to the notion that sometimes, it takes walking in someone else's shoes to truly comprehend the challenges they face.
Michaela Smith: A Beacon of Expertise
With a master's degree in COMMS and four years of experience as an O&M specialist in the Cleveland Independent School District, Michaela brings a wealth of knowledge and compassion to the field. Currently pursuing a Ph.D. in special education at Texas Tech University, her commitment to continuous learning and growth is evident.
As a mother of three, one of her sons navigates life with autism spectrum disorder, while her youngest battles cortical visual impairment and multiple disabilities, including cerebral palsy. Her decision to become a COMMS professional was not just a career choice; it was a heartfelt commitment to improving her son's quality of life and extending that support to other families facing similar challenges.
Michaela's passion lies in advocating for and promoting the importance of early intervention in orientation and mobility for children with CVI and multiple impairments. Her dedication to making a difference in the lives of these children and their families is both admirable and inspiring.
From Frustration to Understanding: A Personal Evolution
As a mother of a child with autism and another with a visual impairment accompanied by multiple disabilities, Michaela's journey through the special education system has been multifaceted. She candidly reflects on her initial experiences, acknowledging the frustration that arose from a lack of understanding. However, her perspective evolved when she transitioned to the other side of the IEP table as an advocate and specialist.
Michaela emphasizes the invaluable nature of experiencing both sides of the IEP process. Initially "just the mom," she grappled with frustration stemming from unfamiliarity. Now, as a professional, she has a profound understanding of the intricate workings of the system. This dual perspective has shaped her advocacy approach, blending the empathy of a parent with the knowledge of an expert.
A Personal Touch: Going Beyond Professional Boundaries
Michaela's advocacy style is driven by an unyielding passion for ensuring the best outcomes for students and their families. She acknowledges being "a little too hands-on," a trait she attributes to her personal experiences. This hands-on approach stems from her desire not only to advocate for the students but also to support and understand the challenges faced by their families.
In Michaela's world, professional boundaries blur as she builds deep connections with the families she works with. All her parents have her cell phone number, fostering open communication that goes beyond the typical questions related to visual impairment or Orientation and Mobility. Michaela's unique approach allows her to connect on a personal level, sharing in the struggles and frustrations that parents of special needs children often face.
Michaela's ability to empathize with the mothers she works with sets her apart. Her dual role as a professional and a parent gives her a unique insight into the struggles faced by families navigating the world of special education. By providing a safe space for open communication, Michaela creates an environment where families feel heard, understood, and supported.
Tailoring Instruction to Individual Needs
It is important to recognize that each child is a unique individual with their own set of abilities and challenges. Michaela highlights that when working with higher functioning cane users who are already independent travelers, the teaching approach may not differ significantly from that of their peers.
However, when it comes to younger children in the early intervention program, she emphasizes the need for a different teaching approach. In Texas, where Michaela works, orientation and mobility specialists also serve children under the age of three. This aspect of their work fuels their passion. She believes they teach differently compared to peers who have not experienced working with children with multiple disabilities and visual impairments in the early intervention program.
Philosophy of Inclusion and Intervention
Michaela believes that every child deserves comprehensive intervention from an early age to give them the best chance at a fulfilling life. She rejects the notion of judging a person's level of independence solely based on their ability to become independent cane travelers or hold a job. Instead, every person's personal best level of independence, regardless of their abilities, is equally beautiful and valuable.
Furthermore, Michaela highlights the importance of parents witnessing their child's growth and improvement, particularly when faced with uncertainties and limited prognoses from doctors at a young age. Michaela's personal experience with her own child, who uses a wheelchair, emphasizes the significant progress that can be achieved through early intervention.
Expanding the Scope of Orientation and Mobility
Michaela acknowledges the controversy surrounding the expansion of orientation and mobility services to children with multiple impairments. Traditionally, orientation and mobility teaching originated from serving veterans and gradually extended to different levels of need. Now, it has reached early intervention programs, catering to babies with multiple impairments.
Michaela believes that this expansion is necessary and deserves recognition. O&M should not be limited to certain populations but should be inclusive and adaptable to meet the diverse needs of all individuals, regardless of their impairments or level of independence.
A Personal Understanding of CVI
Michaela acknowledges her personal connection to CVI, as her own child has been diagnosed with this visual impairment. While she clarifies that her expertise lies primarily in orientation and mobility (O&M) rather than being a teacher of the visually impaired (TVI), she has gained an exceptional understanding of CVI, particularly when it comes to early concepts and fundamentals.
Living through the journey of exploring her child's visual abilities, identifying strengths and weaknesses, and working through her child over the years has provided her with invaluable insights. She emphasizes that she has witnessed her child's progress and changes in their CVI range, documenting these milestones and comparing them over time. This firsthand experience brings a unique perspective to her work.
The Value of Early Intervention
Michaela points out that her experience is not typical since most children with CVI do not receive a range of interventions until they are older. Typically, interventions are implemented during the school-age range for these individuals. However, she stresses the importance of early diagnosis and early intervention, as she has witnessed firsthand how essential it is for children with CVI.
Having tangible proof of the benefits of receiving services early in the child's life, she passionately advocates for the necessity of early intervention. She believes that early implementation of services, even at the early intervention stage, can make a significant difference in the lives of children with CVI, allowing them to reach their fullest potential.
Long-Term Perspective and Insight
One of the unique advantages of having a child with CVI as they grow older is the ability to observe their progress over the long term. Michaela highlights the importance of this aspect, as it is not common for children to receive a range of interventions at such a young age. Having the opportunity to witness her child's development and compare his CVI ranges over time has been truly remarkable.
This long-term perspective reinforces Michaela's belief in the significance of early intervention for children with CVI. It serves as a tangible reminder of the impact that timely and targeted services can have on a child's visual abilities and overall development.
The Frustration Unveiled
Michaela expresses a sense of frustration rather than specific challenges in her work with children with CVI. From her experience, she finds it obvious when a child is struggling to see, based on her knowledge of CVI and its characteristics. What frustrates her is that the condition often gets missed, raising questions about why teachers or doctors didn't recognize the signs earlier. This frustration stems from the knowledge that these children have missed out on crucial early intervention that could have made a significant difference.
Michaela underscores the importance of early intervention in CVI, especially considering the brain's ability to develop new pathways and improve vision over time. She also highlights that CVI is now recognized as the most prevalent visual impairment, making it all the more puzzling why it is still missed so frequently.
When her child was born, he started experiencing seizures, leading to an MRI and EEG at a larger hospital. It was during this process that a neurologist discovered brain damage, which could potentially affect her son's vision. While this revelation was unexpected, it prompted her family to seek early intervention, including visits to the ophthalmologist. Surprisingly, the eye doctor found no issues with the child's eyes, highlighting a potential lack of understanding of CVI among some eye doctors.
Michaela emphasizes that she does not intend to criticize the medical field but rather suggest that some eye doctors may resort to labeling children with CVI as legally blind or diagnosing them with CVI simply because they cannot find any apparent issues with their eyes. She believes that a lack of comprehensive understanding of CVI within the medical community may contribute to these missed diagnoses.
Michaela also notes that children with CVI and multiple disabilities often face additional challenges in receiving the necessary attention and support for their vision issues. Professionals in the medical field tend to focus on addressing the primary health concerns associated with other disabilities, overshadowing the visual impairment aspect. For instance, children with conditions like cerebral palsy, seizures, failure to thrive, feeding tubes, or nonverbal communication often have their vision concerns overlooked due to the prioritization of their overall health.
Discovering Hope: A Child's Journey with CVI
Michaela shares a powerful experience of a student with Cortical Visual Impairment (CVI) who transferred into their district with a history of minimal early intervention and visual impairment (VI) services. Michaela and the VI specialist conducted a unique test in a quiet, dimly lit bathroom using red lights to assess the student's visual responses. Despite initial skepticism, the child did show some tracking, challenging the belief that he saw nothing. During an IEP meeting, the parents, previously told their child was visually impaired, were emotionally moved to tears upon learning about their son's actual visual capabilities. The story highlights the impact of misunderstood CVI, the importance of early intervention, and the progress made in improving the child's visual experiences, underscoring the significance of educators and specialists in guiding families through such challenges.
Michaela’s Advice to Becoming a Better O&M Specialist
Michaela’s advice resonates with courage and compassion. It recognizes a common obstacle – fear of the unknown. Working with MI VI children in early intervention can be complex and intimidating, especially for those unfamiliar with the unique challenges these children face. However, the reassurance lies in understanding that, despite their complexities, these children are still babies with a fundamental need for love.
The call to not be afraid encourages a hands-on approach, emphasizing the importance of overcoming hesitations in dealing with MI VI kiddos. By dispelling fears, specialists can create a nurturing environment that fosters the physical and emotional development of these children.
At the core of this advice is a reminder that, beyond diagnoses and complexities, these children are individuals who crave love and connection. Understanding this basic human need is the key to building trust with both the MI VI children and their parents.
Michaela's dedication to early intervention and inclusive education stands as a testament to the transformative power of personalized teaching methodologies. The conversation not only underscores the importance of tailoring instruction to the unique needs of each child but also advocates for a broader understanding of orientation and mobility services, challenging preconceptions and fostering a more inclusive environment for visually impaired individuals.