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Alopecia Autism
Awareness!

 

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Kickin' Cuz We Care

August 22nd, 2015

Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art. My name is Rachel and I am Isaiah's mom. Isaiah was medically diagnosed with PDD-NOS(Pervasive Developmental Disorder-Not Otherwise Specified), in other words, an autism spectrum disorder. Isaiah was 18 months of age when I noticed something was changing in him. He started hiding in small spaces, spinning in circles, lining up his blocks, screaming for no reason and banging his head against walls amongst other behaviors I could not explain. I would call his name and try to get his attention and it was as if he was looking right through me into nothing, as if he had shut down mentally, emotionally and verbally. We had his hearing checked which then followed with him having tubes placed in both his ears. This definitely helped Isaiah. He noticed the birds in the air and the music when it played, but he still did not acknowledge my existence.

Birth to 3 came into our home when referred by his pediatrician when Isaiah was almost 2. Isaiah went through Speech and Occupational Therapy every week. I did not hesitate asking their professional opinion and was told they could not diagnose Isaiah, however if I wanted him to see a specialist they would provide the information. The waiting list was 6 months out and at the age of 2 and a half Isaiah was officially diagnosed with PDD-NOS, ASD at the Waisman Center in Madison Wisconsin. Isaiah turned 3 and transitioned from the Birth to 3 program to the Fox Valley Autism Program, an in home intensive therapy program with therapists coming directly into your home, 4 hours a day, 5 days a week. They designed plans around Isaiah specifically. Isaiah continued with the program until September 2013, when he graduated the program.

Isaiah is now 7 and a tower of information, love, respect, kindness, humor and creativity. Without the help and support of his therapists, doctors, teachers, family and family friends, Isaiah would not be where he is today and I do not look back and think "what if" because as a parent I had one choice and I chose to be Isaiah's voice when he did not have one. As parents we are advocates for our children and it is our responsibility that under any circumstance we provide them with the tools to create their best possible future. Stepping aside as a parent and realizing I could not do this on my own was very difficult. That lasted one second. Isaiah's lifetime has been given to him in the gift of all these people that helped raise him these last 5 years. "It takes a village" is one of my favorite quotes because it most certainly did with Isaiah and it was worth every moment. Thank you to Isaiah's village!

My hope through this awesome kickball event is to not only create awareness for autism and a safe fun place for Isaiah to meet many new friends, but to also reach out to parents out there who are struggling with a diagnosis of an autistic child or are struggling to get their child tested because the reality of that possibility is their biggest fear. Let us be your village. Thank you to Autism Speaks (www.autismspeaks.org) for the above information on all the technical explanations of the disorder.

Why?

September is Alopecia and Autism Awareness month and to prepare we are kicking off our yearly kickball tournament to help raise funds and awareness about these causes.  

 

Through our Kickin' Cuz We Care for Alopecia and Autism kickball tournament, we hope to educate participants and spectators about these causes, make new friends and raise funds that can be donated to 2 great organizations, the Children's Alopcecia Project and Autism Speaks.

AutismSpeaks.org

Contacts & Information:

24h

Host: Amanda Suprenand & Rachel Nielsen - kickincuzwecare@gmail.com

         

 

About Autism:

About Alopecia:

ThankYou

Alopecia is considered an auto immune disease and mistakenly attacks healthy hair follicles causing the hair to fall out. This can happen with clumps of hair falling out in patches on the head to full loss of hair over the entire scalp and body hair. Alopecia cannot be “cured” but it can be treated with possible hair regrowth.

 

In the 1st grade, Kameryn started losing patches of hair on his head and continuously more patches, along with losing his eyelashes and eyebrows till the summer after his 3rd grade year when he had lost all of his hair on his body. We took him to a specialist at Children’s Hospital where he was diagnosed with Alopecia Universalis, which is the complete loss of hair over the entire scalp and body, including eyebrows and eyelashes. The doctor did give us some options as to how to try and treat his Alopecia, Rogaine, steroid creams, shots into the scalp, and Biotin but still stated there were no guarantees his hair would grow back and if it did it come back, that it would stay. We had tried these treatments except for the shots, thinking they were too painful for a child 10 years old to go through, and there was no change in his hair regrowth. Since we were not seeing any new regrowth, we decided, along with Kameryn, not to continue with the steroid treatments and see if his hair would grow on its own. It has been a little over a year and have only felt a few areas that have had a tiny bit of hair growth and then it disappears again, but we are hopeful that it will all come back and stay for good.  

 

Not knowing about Alopecia and feeling all kinds of emotions before Kameryn was diagnosed, we decided to look to see if there were any other kids or support groups in the area for children with Alopecia, so that we can pass on the information that we found to others who are feeling the unknown. In doing more research we found Children’s Alopecia Project (click on link below for more information), there mission is amazing and they hold multiple functions, including Alopeciapalooza, to help raise awareness and raise self-esteem for children living with Alopecia, a BIG Thank You to the organization!! We were able to go to Alopeciapalooza last year in Michigan, there were fun team-building events, speakers (some with Alopecia), supportive workshops and lots of water/land activities to help take away from focusing on the hair and instead focusing on their self-esteem. Alopecia is never easy on children or their families, but it becomes easier when you know you’re not facing it alone.

 

Thank you to everyone for all the resources given to help make this kickball event possible!!

 

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