“I like to compare the job of a father to that of a long-distance runner. Fathering is a marathon—a long and often trying journey—and we must be disciplined if we hope to finish successfully.” – Ken R. Canfield
Our focus at Abram’s Nation is not just to create practical solutions and impactful products; we strive to create a community where a family can turn during their journey and connect with someone who has been through the thick of it. As we continue to honor our community of dads, we recognize a few who are sharing their experiences and advice for all dads of kids with special needs. If you’re struggling to run your marathon, there is a community of dads ready to support you!
Meet our second dad, JJ, who along with his wife, Marisa, have raised two wonderful sons – Henry (8) and JR (15), who has Angelman Syndrome.
What was it like finding out your child would have special needs?
JJ: Initially, it was very devastating. You are grieving for a child that you are told will never have a quality of life. These expectations are coming from healthcare providers that are experts in their fields. There are other emotions such as anger, sadness, loneliness and numbness that come in different waves. Your spouse is going through the same emotions, but often at different times, so it is difficult on your marriage.
How have your expectations of fatherhood changed?
It’s tough to say, as JR was our first-born son, so I didn’t know any different. I would say that I initially thought that I would not have as many opportunities as a “typical” father. However, with time and growing up with my other son, I appreciated JR for who he is and what he can do, as opposed to what he can’t do and my dreams of who he might have been without his syndrome.
What changes have you seen in yourself?
I definitely see more patience in myself, although this is continuously tested.
How do you and your wife remain close and connected?
Our relationship has been tested, as both JR and Henry have a lot of commitments and need our attention. As well, I have responsibilities for my job. I would say we try to find time, even a few minutes, to connect, but it is still a challenge.
What is the biggest lesson you have learned from having a child with special needs?
Treat your special needs child as age appropriate, not the age you think they are cognitively. Also, a special needs child demands a lot of time and attention so make sure all members of your family, regardless of the amount of time, get your love and attention too.
What is the biggest surprise about having a child with special needs?
JR surprises me every day with what he is able to accomplish, not matter how big or small. Considering he is non-verbal, we don’t always understand what he is learning each and every day.
What is a misconception you want people without a special needs child to know?
There is no such thing as a “normal” child. All individuals have their challenges and crosses to bear, so we should not judge one another and hold our children to a standard of what is “normal.”
What would you say to dads who are struggling with a new diagnosis for their child?
Don’t be too proud to reach out for help. Find a support group of other fathers that have a child with a similar diagnosis or seek out a counselor. Rely on your faith as a “rock” in your life. Make time for yourself and your health. If you have a spouse of a significant other, prioritize being present with that individual.
Thank you, JJ, for being part of our Abram’s Nation community and a resource for all of your fellow dads out there. If you were inspired by JJ’s experiences, would you like to share your story and advice for other dads? Please click here to introduce yourself! We look forward to connecting with you and hearing your story.