“Hello fellow Spectrum families! My name is Beth Steggall and my husband Matt and I have a handsome little guy Owen. Owen is three, and suffered a brain injury at birth which resulted in him having a seizure disorder and cerebral palsy. He later developed craniosynostosis resulting in cranio/facial reconstructive surgery at 6 months of age. Among these disorders Owen also has speech, physical, and developmental delays. When Owen turned two he qualified to participate in the inclusion classroom setting with TEIS (Tennessee Early Intervention Services). We were so excited that he was able to begin services here, because he was really struggling with social anxiety in pretty much every setting. Once Owen started services we all began to see significant changes in behavior. Our early interventionist recommended that we have him evaluated through CAPS (Child Adolescent Psychological Services) on Ft. Campbell, because she felt he was also demonstrating autistic behaviors.
Matt and I really struggled with identifying and labeling Owen’s behavioral issues. Was it disability or was it autistic behavior? Owen has extreme texture problems to the point he would make himself vomit and gag on non-preferred textures. He still refuses to eat anything wet to the touch and is extremely sensitive to people touching him outside of our immediate family. He has rhythmic self stimulatory pattern behaviors involving clapping and biting his own hands. If we ever have to step out of his routine in any fashion, it is misery for everyone around him. All of these behaviors are classic spectrum behaviors. Owen struggles with effectively communicating his wants and needs because of his speech deficit, yet cognitively he identifies and knows he can’t express what he wants. (Owen was also non-verbal until age three and his speech is still a huge work in progress.) Dr. Clark at CAPS diagnosed Owen with a spectrum disorder PDD-NOS (pervasive developmental disorder not otherwise specified), which qualifies Owen for ABA and respite care services.
Owen receives speech therapy, occupational therapy, physical therapy, and ABA therapy weekly. All of our therapists have been such blessings, but ABA has hands down been the biggest. After interviewing multiple ABA candidates, we ultimately went with Pastiche Partners out of Nashville, Tamar Robinson and Jane Barnes have been a God send. Our ABA therapists have done everything from grocery shopping with us, going out to eat with us as a family, and assisting Owen in both private and public school settings-there are no limits to the areas in which they will assist. All of these areas are the most problematic for our family. Owen was completely non-verbal until we has ABA. Essentially the ABA therapists’ facilitate the means and the knowledge on how to effectively address problem behaviors and how to address them with spectrum challenged children. (Inadvertently our typically developing 2 year old daughter Quin as well!) ABA has ultimately provided for Owen the function and benefits of speaking, and appropriate responses to non preferred places, people, and things. With the collaboration of our ABA therapist I confidently say that Owen’s problematic behaviors, social anxiety, and social inequities have improved 100 percent in comparison to that of a year ago. Instead of just winging it all the time we now have a game plan and know how to effectively “handle” our child, and if we are struggling with him, Tamar or Jane are just a phone call away.
Our biggest struggle at this point is really been receiving the appropriate services and placement options within the public school here in Clarksville. I cannot even begin to tell you the non-compliance regarding special needs children and the district here. (This subject is an entire different conversation.) The most effective and beneficial thing for Owen has been exposure. Exposure to those settings and situations that he struggles in most. We have him enrolled in the public school three days a week and then in private school two days a week. It has been vital that we expose Owen to typically developing peers in an attempt to bridge that gap regarding Owen‘s non-verbal issues and social inequities. We were able to do with the assistance of our ABA therapists and their willingness to assist Owen in this setting and with his bathroom needs. Every opportunity we have to consistently expose Owen to typically developing children in a controlled environment i.e. church, private school, and play dates, we do. Consistency and familiarity to these peers and environments have been vital in Owen’s developmental success.
It is definitely a struggle from day to day but our Owen has overcome some many battles and has done it with great ease. He is the sweetest, most compassionate, and loving little boy. My biggest advice is to just “find your child’s happy.” Owen’s happy is watching The Backyardigans or Yo Gabba Gabba, playing iPad, and being outside. He doesn’t really have an imagination and that is common with spectrum kids. Our normal isn’t everyone else’s normal, and that is ok. The best thing you can do for you as a parent and for a family with a spectrum child is, accept it. Accept that our lives our different, our children’s behaviors will be different, but just facilitate the means to curb our children’s inequities with the resources available. Owen is an awesome kid, I truly wouldn’t change him if I could. Matt and I just embrace his deficits and focus on his strengths, and reassure him it’s ok to be unique.”