The Faces of the Autism Spectrum: Meet Jesse!


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Introducing Jesse

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I’d like you to meet Jesse. He’s an amazing six year old boy that has fought hard to be where he is today. At his 12 month appointment I told his pediatrician that I was concerned that he wasn’t even attempting to speak. I was told that he was a boy, he was an only child, and that he would talk when he was ready. The same thing happened at his 15 month appointment. At his 18 month check up, I was still concerned and also pointed out that his toenails were curved upwards. They looked like little cups. I was told that it was a normal part of development and to quit worrying. The doctor even waived his file at me and said “This is one of the healthiest kids we have in the practice! Quit worrying!”

Two weeks later, Jesse had a seizure while sitting in my lap on the living room floor. I called the doctor’s office and described what happened and was given an appointment with the first available pediatrician. We saw a doctor I had never seen before but he immediately agreed with the concerns I had about Jesse’s lack of speech. He ordered a full round of tests in order to find out what caused the seizure and put in a referral for speech therapy. Even at his speech evaluation, I was told there was no way he was autistic. Between 18 months and 2 years, Jesse declined developmentally. While there was some small progress made in speech and we had started using sign language to communicate, more and more behaviors were popping up that caused a concern. In September, my husband came from for R&R to celebrate Jesse’s 2nd birthday. While out to breakfast one day, we ordered Jesse a pancake and when I cut into it he had a total and complete meltdown.

At his next speech session, I told his therapist about the meltdown and showed her his toenails. They were curved upward because Jesse was toe walking. I remember her nodding and I knew it was time to push forward with getting the diagnosis.

It’s amazing how this all lined up for us. That doctor that I saw after Jesse’s seizure was a developmental pediatrician and an autism expert. Within two months we had completed the evaluations and been given the official diagnosis of “Infantile Autism“. I was told to immerse him in therapy and hope for the best but to be prepared for the worst. I ignored the part about being prepared for the worst and began to prepare for battle.

Jesse added ABA therapy, Occupational Therapy, Early Intervention, and also began a developmental preschool that included him in a class with typical peers. He quickly became the busiest two year old I have ever met.

I’ve had to learn to find my voice. Sitting back and letting things happen were no longer an option, I have a child that can’t advocate for himself so I had to learn how to do that. I’ve had to argue with therapists when I felt they were out of line, I’ve had to request meetings with principals and directors and wave laws around in front of them so they knew they couldn’t just let Jesse slide through the system. The picture I attached was included in a letter sent to Congress in a plea for them to include ABA therapy coverage for all military members. I have become an advocate for Jesse as well as the autism community in general and happily support others that are on this journey.

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Jesse is currently in a mainstream kindergarten classroom. He’s reading, writing, doing math, has a quick sense of humor and the greatest laugh I’ve ever heard. He loves everybody, especially babies, and happily hands out hugs – even if you don’t want one. We are still using ABA therapy, speech therapy, and occupational therapy and he’s now the busiest 6 year old I know.

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It’s important for you to know that he’s also the happiest 6 year old I know. He struggles with textures when it comes to food and clothing and he’s very sensitive to loud noises or crowded situations. He becomes over stimulated easily and doesn’t know how to properly bring himself back to center. He wants to be a friend to everybody and doesn’t understand when that feeling isn’t mutual. He wants to hug everybody he meets. He repeats scenes from his favorite shows at inappropriate times and he’ll talk forever about dinosaurs if you let him. He needs warnings when the situation he is in is about to change. He’ll learn quickly weather or not you really mean no if you say it so say what you mean and mean what you say. He claims to be allergic to homework and naps. As of right now, he wants to be a lion when he grows up – since he knows he is going to get “fur” and larger teeth, it just makes sense. He loves to run so much that they use it as a reward at school. When he finishes his math, he gets to run laps! He loves the beach, the sun, the sand — three years ago he wouldn’t touch sand, now he makes sand angels every chance he gets. He ate turkey on Thanksgiving for the first time last year, and yesterday on Easter he ate ham for the first time. His milestones might happen later than most, but they are happening and I know they will continue to do so.

But he’s happy.

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If you are interested in sharing your journey with Autism to help raise awareness of the diversity of the Autism Spectrum Disorder, please email your story and pictures to april @ picturedmomentsbyapril dot com.  Thank you!

The Faces of the Autism Spectrum: Meet Owen!


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Meet Owen!

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“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.”

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