From Where We Stand: Perspectives on Fathering a Child with a Disability

Most parents of children with disabilities would agree that at some point along this journey they’ve felt alone, isolated, confused, and scared. Fathers are no different, and many say they share a unique set of concerns, different than mothers. Research shows that disability support services focuses primarily on the needs of mothers, and are predominately provided by women.

This Father’s Day it’s important to recognize the contributions and needs of all the dads that share in this unique journey.

Below are the perspectives of fathers of children with Down syndrome. Make sure you read to the end, to get tips and resources from dads to dads in similar situations.

Read Related Post: Mother’s Day Advice From Moms Who’ve Been There

Brian Herndon, Associate Professor of Elementary Education at John Brown University

“It is interesting being the dad of a child with Down Syndrome. The overwhelming majority of people that I interact with in the disability community are mothers. There seem to be very few, if any, fathers who are actively advocating for their child(ren) with disabilities. I am part of a couple of Facebook pages that are specifically for dads, but they are, honestly, pretty generic. There is one that is called Band of Brothers, and mostly dad’s just post cute pics of their child doing fun things. The Kansas City Down Syndrome Guild has a dad’s group, but I never got involved in it. I get posts and updates, but I don’t do anything with it.

I think I’m a bit of a different kind of dad though because I am also an elementary school educator. So, children are an area of expertise for me. I have never been one to shy away from being around children, even babies. I knew pretty early on that if I didn’t speak up for my child and become knowledgeable about the law that no one else would. My wife would speak up, but I knew that schools would shoot her down pretty quickly and she wouldn’t really know what to do from there. She’s a tough woman, and she would have figured it out for sure. But, she is very comfortable with me being the one to be the strong voice when it comes to schooling and inclusion.”

Erik Weiner, Disability Advocate who’s worked on key disability rights legislation in his state

“Being a father to a child with a disablilty can sometimes be a lonely journey. Not from the aspect of being alone from your spouse but sometimes from the special needs community itself. I remember when we first found out that Devan was born with Down syndrome. Being the type of person that I am I started to reach out to as many groups as I could. As the days and weeks went on I found that many times the groups were mainly run by women and a lot of times when I would ask questions or tried to participate in an online discussion my questions and statements went unanswered. I felt like being a man/father my concerns for my child weren’t “good” enough that it was up to the mom to ask those questions. I will say that there were a few moms that reached out to me and because of that I have formed some great resource/friend relationships. As I moved on in the journey I did find support groups from men but never fully pursued active participation with them for some reason.

All my life I have been in one way or another involved with individuals with all types of disabilities. Whether it was through school, coaching, or personal experiences. So the idea of disability or an individual with a disability was not a new concept. What WAS a new concept was now I WAS that parent with a child with a disability. From the moment we were able to take Devan out on family outings I immediately went into “on guard” mode. Meaning I constantly was looking for someone to give her a second glance, to make a face, laugh at her, to have some say “looked at that retard”. I was on edge and looking for that fight. Not that I was ashamed of her or who are family was, but because I knew there were not so nice people out there. People that don’t see her the way I do. Slowly and I mean very slowly I have been able to push that “feeling” down. Because I truly don’t feel it will ever go away; just stored away in an “in-case of emergency break glass” kinda of thing.”

Mitchel Rothholz, Disability Advocate who brings over 34 years of association management experience to the Down syndrome community

“Fathers sometimes feel isolated because they are trying to figure out their role.  I encourage dads to connect with each other so they have someone going through similar challenges who they can talk to. Attend meetings of your local interest groups, attend the National Down Syndrome Congress (NDSC) convention, volunteer to be a parent-to-parent counselor or work on a committee, visit legislators. Once you engage you will get the bug and realize you are not alone. My wife, Julie, and I complement each other and play off of each of our strengths.  Julie and I have been group facilitators for the sharing sessions at NDSC, and it is interesting to compare notes of what each group discussed. Both are trying to figure out the foreign language they have been thrust into and trying to do what’s right for their kids. Navigating all of the issues can be daunting.

There will always be ups and downs in raising any child, but in raising a child with an intellectual disability the challenges can be amplified.  This is why this is a team sport with each parent supporting each other.  Identify your strengths and take on responsibility for key aspects regarding the needs of your child.  Kids with Down syndrome are no different than other kids – they will find your weak points and exploit those.  Stay strong, consistent, coordinated and support each other.”

Resources For Dads:

https://www.dadsnational.org: D.A.D.S or Dads Appreciation Down syndrome assists and supports fathers of individuals with Down syndrome

National Down Syndrome Congress Convention’s Dad’s Sharing Session. Every summer, during the NDSC’s annual convention, Dad’s breakout by age group to discuss issues common to us all.

Check out your local Down syndrome organization for a local dad’s group. Many are active in their local community.

The Arc also provides Father’s groups in many cities throughout the nation.