Raising a Special Needs Child with Valerie Muck

Valerie Muck, a retired United States Air Force Senior Executive, highlights National Disability Employment Awareness Month and discusses challenges she faced and overcame in raising a child with special needs. Valerie’s son Steven is an adult with CHARGE syndrome. In this episode, Valerie shares tips for employers, caregivers, parents, friends, co-workers, and neighbors when it comes to addressing special needs issues. A special guest, Valerie’s son Steven, discusses his views on special needs issues. 

 

Episode Highlights: 

• First, Emily Harman introduces Valerie Muck. 
• Then Valerie talks about the struggles of dealing with her miscarriages. 
• What are some of the difficult issues that Valerie and her husband dealt with while helping their son Steven?    
• Also, what type of toll did Steven’s surgeries take on Steven and the family?  
• How did the attention paid to Steven impact Valerie’s daughter? 
• And Steven’s medical bills were in the 10s of thousands of dollars.  
• Has Steven been able to make friends? 
• Once Steven turned 21, what was his life like? 
• People with disabilities are often isolated by the lack of employment opportunities.. 
• What is Valerie’s biggest fear for Steven when she and her husband are no longer able to care for him? 
• Furthermore, parents are the biggest advocates for their children. 
• Then Steven talks about special needs issues.  
• Finally, Valerie talks about balancing her successful career and her family. 

3 Key Points:

1. EMPLOYERS: October is National Disability Employee Awareness Month. This year’s theme is ‘The Right Talent, Right Now’. If you are an employer / business owner, please assess your organization and consider hiring a person(s) with special needs. Diversity and inclusion can make your team stronger!  
2. CAREGIVERS/PARENTS: You are the biggest advocate for your child / family member. There are multiple resources out there; however, finding the right resource(s) is challenging. Valerie didn’t have search engines (e.g., Google, Bing) when her son was born. Finding the right resources was strictly through word-of-mouth. Valerie still puts a lot of stock in word-of-mouth. Reach out to caregivers / parents that have already gone through, or are going through, the same challenges that you are facing. You might pick up some sage advice and, conversely, you might offer some sage advice. Pay it forward!
3. FRIENDS/CO-WORKERS/NEIGHBORS: If you know somebody that has a child or family member with a catastrophic medical condition, please reach out to them and offer help. Valerie spent many hours in hospital rooms or doctors’ waiting rooms.  Offer to give the parent / caregiver a couple hours of respite care so they can go home and take a shower. Offer to bring them a nutritious meal (hospital food and fast food is not always high on nutrients). Offer to mow their lawn. Offer to just lend an empathetic ear. Sometimes just having somebody to talk to is a way to break the monotony. The smallest acts can have a profound impact on the family. As they say in the Air Force, be a good wingman!

Tweetable Quotes:

• “The biggest thing that I would tell parents off of some of the things that we went through is you are your child’s advocate. Nobody else is going to advocate for them.”
  – Valerie Muck
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• “CHARGE syndrome. CHARGE is an acronym. It is C H A R G E. The “C” is for Coloboma…”H” is for Heart…”A” is for Atresia…”R” is for retardation…”G” is genitals…”E” is for ears.”
  – Valerie Muck
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• “People are special in their own way, even if they have special needs.”
  – Valerie Muck
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Resources Mentioned:

• Valerie Muck Linkedin
• Valerie Muck email
• Campaign for Disability Employment (CDE)
• CHARGE Syndrome Foundation 
• AbilityOne 
• National Institute for the Blind 
• Source America 
•  Valerie mentioned a poem that has impacted her perspective.  It is titled ‘Heaven’s Very Special Child’ by Edna Massimilla.
• Emily Harman
• Soul Pajamas
• Onward Instagram | Twitter | Facebook
• Onward Podcast Facebook Group
• PodcastPress