eLumanated Volume 1, Part 2: Helping Our Colt (a Twice-Exceptional Child)
eLumanated is eLuma’s newest series, which showcases parents and professionals in their efforts to elevate the lives of students with disabilities. As a progressive therapy provider, we recognize that no two students are the same and that there are many different approaches to the same diagnosis. Join us each week to check out different perspectives and experiences related to raising exceptional children, organizations that facilitate their success, and insights into effective interventions.
This week, Christa Milner, founder of My Place To Be, returns with part II of her three-part series, in which she’ll share insights on raising a twice-exceptional child, challenges and triumphs along the way, and creation of her non-profit organization that provides a safe place for socialization and support for children with autism and their families. If you missed it, please check our Christa’s first post eLumanated Volume I: Raising a Colt (a Twice-Exceptional Child). We also invite you to check out My Place to Be to learn more about this unique organization.
Helping Our Colt
By Christa Milner
The one thing I have found in the past 17 years raising our Colt is there is no clear path for intervention. There’s no definitive treatment prescription or guaranteed method. Finding effective intervention results from numerous trials and errors as well as continuous prayers that you find what works for your child’s unique challenges. In order to be effective, treatment involves not just direct work for the child, but a tremendous amount of exhausting hours for the entire family. Our journey through various intervention models and treatments doesn’t follow the “traditional” autism intervention route as we have tried many distinctive approaches to help our son.
For our family, effective intervention started with preschool. As I explained in the previous post, Colt was a very active child who was always on the move. Once we had him placed in a preschool that understood his challenges, we participated in a home visit. The school’s social worker came to our home and observed Colt in his natural surroundings. We live in a unique round home that has a circular hallway similar to a small track. Every evening, Colt would ride his tiny bike around and around the hall–it calmed him, and our family learned to ignore the noise. During the social worker’s visit, Colt rode his bike around and around, moving constantly as he always did. She politely asked us if we had heard of Sensory Processing Disorder and if we had considered occupational therapy (OT). She then provided us with the phone number for a professional who would change our lives forever–our first occupational therapist, Miss Holly.
The Occupational Therapist
Miss Holly is an expert in sensory processing disorder. When we met for Colt’s evaluation, she noted significant delays in his sensory integration in seven sensory areas. I could write a book just on how awareness of Colt’s sensory processing deficits allowed us to devise strategies to help him through school. When we first started, our goal was to reduce his tendency for “flight or fight” reactions so that he could sit and pay attention in class. Colt’s first IEP goal was to sit in circle time for five minutes. No, my child could not sit for more than five minutes! We participated in weekly OT sessions for years, starting at age three through eighth grade. We were lucky to qualify for services for such a long period of time paired with a good team that understood Colt’s anxieties as a result of his sensory overload. In addition to sensory integration goals, his OT services addressed handwriting and fine motor skills.
After Miss Holly had worked with Colt for a while, she introduced us to listening therapy, or Therapeutic Listening, which utilizes sound-based frequencies paired with sensory integration activities. In listening therapy, Colt wore a special set of headphones that played an electronically-modified sound spectrum that naturally synchronized sounds, rhythms and patterns to help organize the nervous system. While listening to the music, he was encouraged to move around and play but could not look at any screens. We started at age three with 20-minute intervals twice a day. Although it was not his favorite activity, we saw improvements, including decreased intensity and frequency of meltdowns as well as decreased hyperactivity. We continued into kindergarten decreasing to one 20-minute daily interval until Colt plateaued in progress at age five.
A Missed Opportunity
Since our family was so focused on improving Colt’s self-regulation, speech therapy wasn’t even a consideration when he was younger. Now, I realize how much speech therapy would have benefited him by improving his communication skills, which likely would have significantly decreased his “behaviors.” Several times, we requested an evaluation for speech therapy when Colt was in elementary school. However, since his articulation was age-appropriate, his IEP team did not recognize the need. However, in addition to day-to-day communication, Colt also struggled significantly with social skills and pragmatic language, resulting in difficulties making friends and interacting with his peers. But he never qualified for speech therapy when he was in public education.
When we began to homeschool, I fought our school district for speech therapy. I was Colt’s advocate and had to be persistent, explaining relentlessly at an IEP meeting all the reasons why he required speech therapy. After all, it was likely that Colt would still be in the public school system had he had the necessary interventions to help him use language in order to communicate his thoughts and wants and needs so that his anxiety and aversive behaviors were minimized. I’m glad that I didn’t back down, was confident enough to express my frustrations, and strong enough to state my case because I won that fight and was finally able to have speech therapy added to Colt’s IEP in fifth grade.
Once he began participating in speech therapy that addressed his communication skills, specifically his pragmatic language, we began to see improvements in his ability to communicate his basic wants and needs. Thanks to a couple years of social stories and social skills intervention, I considered Colt an expert in telling you what he should do in every social situation, making it appear that his social skills were also age-appropriate. Unfortunately, most standardized tests that measure social skills and pragmatic language don’t differentiate a child’s ability to tell the examiner how to handle a social situation versus actually applying those skills in a real social situation. So even though Colt appeared to know how to handle various social situations, he continued to struggle significantly every day with things such as establishing eye contact, greeting his peers, initiating interaction, and participating in activities with his peers.
The Benefits of Speech Therapy
Looking back, I have come to realize three major benefits of speech therapy for Colt. The first benefit is that Colt’s behaviors diminished quickly because he was able to properly express himself, which decreased his frustration, and we started seeing a more positive response when dealing with scenarios that had been so challenging in the past. Second, speech therapy reduced his anxiety because he began to understand his peers and process their messages more effectively, which was calming and relieved frustration. Third, as Colt’s speech and language expression and comprehension improved, so did his academic performance. As Colt has gotten older and is facing bigger demands while transitioning to adulthood, we have noticed some setbacks, especially when interacting with his typical peers. Colt is now in his seventh year of speech therapy and has come so far, but he still has a lot of work ahead of him.
In addition to various occupational therapy and speech therapy interventions, we also pursued psychological treatments to address Colt’s anxiety and Obsessive-Compulsive Disorder. We have been in and out of treatment since Colt was three-years-old when we started with a behavioral psychologist. Since we didn’t see much benefit at that time, treatment was put on hold, but when Colt was diagnosed with Asperger’s syndrome, we began to see a psychologist again. This time, the benefit was more for us as parents and gave us strategies and tools to help Colt. After a couple years of direct counseling, Colt needed a break, but in the last year, we have begun to see an amazing psychologist, Pam. This time around, we are seeing huge benefits. I believe the justification for treatment and reason for progress this time is that Colt is mature enough and ready to implement the strategies Pam puts in place for him. I also think that since Pam was recommended by Colt’s physician with whom he feels comfortable, he is more comfortable and receptive with Pam. When Colt is comfortable with those who help him, he grows and learns and reaches new heights.
Natural Diet & Lifestyle
Finally, in addition to skilled interventions, we follow a natural diet and lifestyle that is beneficial for Colt in various ways. When we restrict gluten in his diet, Colt’s anxiety notably decreases. We have also implemented different vitamin regimens–some with great results and some with little change. We have utilized essential oils for years and use blends that help with anxiety, relieve panic attacks, and help balance him emotionally.
Overall, these treatments have been the most successful for our family. The thing with treatment in general is that it usually works when you are diligently utilizing the tools and implementing the techniques. But sometimes, especially with children on the autism spectrum, a treatment that has worked so well may all of a sudden become ineffective. When that happens, we must adapt to the moment, modify our approach, and continue on. As Colt gets older and starts making his own decisions, it becomes more difficult to control his nutrition or make him to utilize the tools that have been recommended. But we still support him with those choices and gently coach him to use what has worked in the past, understanding that we also need to allow him to make the choice that feels right for him.
Christa Milner is the mother to an amazing teen with autism as well as the founder of My Place to Be, a non-profit organization that provides social-emotional learning programs and support for children with autism and their families.
We are so happy to have Christa as a guest. Please join us next week for Volume III of her three-part series.