Autism Spectrum Disorder

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Georgia and Nick: Autism

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When Georgia and Nick’s son Lincoln was a year and a half, he was ahead in his speech, and in lots of different ways, he was a smart kid doing really well. The older he got, he started showing signs of Autism. He lost more and more speech and stopped interacting with his loved ones. He began showing sensory issues, like having a hard time being out in public, which are all signs of being on the spectrum.

“I didn’t really want face that he was showing signs of Autism, but I just didn’t have a choice. When he was two years old, we were at Nick’s family’s house. Lincoln’s first word was ball, and I remember saying, “Come get the ball! Come get the ball!” and he couldn’t say the word ball. That was the moment when I knew something was up and that he had lost so much speech that he couldn’t say that word anymore. That’s when I knew I had to get him checked out, and it was shortly after that when we had him diagnosed.

At first it was just getting to understand that even though I knew my kid, I felt like I didn’t know my kid. After that diagnosis, I didn’t know what to do. For me, the challenge in the beginning was knowing what to do to help him, because I had no idea. We went to early intervention, I absorbed as much material as I could; I got every book I could get, and I had wonderful neighbors who had kids on the spectrum who guided me as to some of the things that I should do. I really just consumed information. I started doing floor time therapy with him two-to-three hours every day. For a kid who doesn’t want to play and interact with you, it’s a little bit tricky. In the beginning, what was so hard was trying to figure out the right therapy. Then this miracle happened, and the state of Utah started a lottery to cover behavioral therapy for kids on the spectrum because they hadn’t covered Autism on insurance before. They decided to do this lottery, and my son was a winner; he won the lottery! We got free therapy after that, and it made a huge difference. He’s really not the same kid. He was low-functioning and had stopped talking almost entirely. He’d say mom and dad, but other than that, he stopped talking and was retreating into his own world. Now, however, most people can’t even tell he’s on the spectrum. The therapy has done so much. He has got his own little quirks, but every child does, and I love him and those quirks about him. In fact, in some ways, I feel like he’s an easier kid than my other children because he’s so predictable. He’s honest and has such a good heart; he’s an amazing kid, and I wouldn’t change him.”

 

 

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Sandra: ADNP syndrome

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After Sandra’s twins were born, they noticed one of the twins, Tony, wasn’t developing typically. Through testing, they discovered several brain abnormalities, heart abnormalities, vision, behavioral, feeding, and many more complications. Sandra’s genetic team told her it was unique to Tony- but Sandra thought differently. Tony went undiagnosed until he was six years old- but through some major research and dedication from Sandra, she found a genetic research study, and Tony was subsequently diagnosed with ADNP syndrome.

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Kayla and Josh: ADNP syndrome

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Kayla and Josh started realizing that their son Parker was falling behind in his development. They went to a geneticist, and through genetic testing Parker was diagnosed with ADNP syndrome- a genetic mutation which can include developmental delays, Autism, and distinct facial features. At the time, he was the 85th person to have been diagnosed in the world. Kayla and Josh open up about the joys and sorrows they have experienced raising Parker, and how they feel blessed they were chosen to raise him.

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Courtney and John: Autism and Mood Disorder

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Courtney and John noticed their daughter Bella didn’t interact well with other children. She didn’t speak until she was three, so they thought her behavior problems such as biting, scratching, and hitting were because she was having a hard time communicating. Bella received some assistance in her early years, but at 9 years old a series of events led Courtney and John to check Bella into a psychiatric ward. Her stay there was life changing for all three of them. Bella received an Autism and mood disorder diagnosis. From there there were able to get the proper treatment, direction and a plan of action.

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Will-Sibling: 3 Siblings with Disabilities

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Will has 3 siblings, all of whom have a disability. His sister, Heidi, has Down syndrome; and is brothers Barrett and Fritz have Autism.

Will opens up about how it’s been being their sibling.

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Bijan and Zach: Twins with 22q11.2 deletion syndrome, or DiGeorge syndrome, and Autism

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Bijan was pregnant when she was told one of her twins had some abnormalities. They declined an Amniocentesis, and decided to keep the pregnancy. Once born, they found their son Jackson had 22q11.2 deletion syndrome- DiGeorge syndrome.

Their sons are now 3 years old. Jackson’s twin, Walker, was recently diagnosed with Autism.

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Jennifer and James: Adoption of Four Special Needs Children.

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Jennifer and James have 10 children, four are biological and six were internationally adopted. Four of their children have special needs including Down syndrome, Autism, Reye’s syndrome, and Moyamoya disease.  Jennifer and James have a truly inspiring story and so much love in their family.

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Christine: Autism

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Christine’s daughter Skylynn was diagnosed at 2 years old with Autism. When Skylynn was first diagnosed, Christine found out that neither her insurance company or the state she lived in would cover the cost of Autism therapies. Christine began to fight for insurance reform and has a truly inspiring story of her journey to getting legislation to pass that insurance companies be required to cover Autism therapies. Skylynn is now nine years old and although she is considered to be severely Autistic,  she has changed her mother’s life for the better.

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Autism. When Skylynn was first diagnosed, Christine found out that neither her insurance company or the state she lived in would cover the cost of Autism therapies. Christine began to fight for insurance reform and has a truly inspiring story of her journey to getting legislation to pass that insurance companies be required to cover Autism therapies. Skylynn is now nine years old and although she is considered to be severely Autistic,  she has changed her mother’s life for the better.">

Posted March 2017 under Autism Spectrum Disorder, Child Diagnosis.

Blanche- A Grandma’s perspective: Autism

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Blanche is a woman in her mid-70’s whose husband had passed in recent years. Blanche has a grandchild named Bobby who came to live with her when he was six years old. Blanche noticed Bobby’s problems, but did not realize the extent of them until he started living with her. A definitive diagnosis of being on the Autism spectrum was not made until Bobby was in his 20’s. Raising her grandchild has proven to be difficult, however, Blanche has found joys in the changes of her life. 

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Blanche is a woman in her mid-70’s whose husband had passed in recent years. Blanche has a grandchild named Bobby who came to live with her when he was six years old. Blanche noticed Bobby’s problems, but did not realize the extent of them until he started living with her. A definitive diagnosis of being on the Autism spectrum was not made until Bobby was in his 20’s. Raising her grandchild has proven to be difficult, however, Blanche has found joys in the changes of her life. 

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Posted March 2017 under Autism Spectrum Disorder, Child Diagnosis, Grandparent.