My name is Joshua Belden. I have a 7 year old daughter, Hanna, who has autism.
If you look at most of the autism related organizations out there, it is painfully clear something or should I say someone is missing…the dads! I am used to being outnumbered by women at certain events, but this was never more evident than last January, when I was asked to speak at the TACA Volunteer Leadership Conference. I bravely marched in with Justin Alderson, Co-Founder of Hope 4 Hanna and the greatest friend someone could ever hope for, and found………
100+ women….and one man. No, this is not a typo.
Somewhere between the pink feather boa and the “crying stick,” our nerves subsided, and we launched into our prepared presentation on fundraising. But the 100+ “warrior moms” had something else on their mind that day. And 100+ women get what they want.
They wanted to talk about dads. What motivated me to get involved? How could they get the men in their kid’s lives to buy in and do more? Moms shared stories of dads in total denial -living in utter disconnect with their affected kids. Some moms just cried for help, overwhelmed by the insurmountable number of daily tasks required to manage the home and life of an ASD family with minimal help. A few shared that the dad in their child’s life was helpful. Very few.
Needless to say, I felt I was taking one for the collective male team that day (you can thank me later). But the bigger picture was clear: What are we doing? How can we effectively and meaningfully contribute outside of ‘bringing home the bacon?’ How can we improve?
Please understand: I’m not slamming dads. After all I am one. I know that many dads are warriors for this cause. But there is a perception held by many of our women that we are either completely absent from the process, aren’t doing enough, or aren’t doing the right things. I won’t go in depth about the differing roles, shortcomings, or struggles unique to dads….that complicated topic will have to wait for my next blog!
I merely want to assure all the mom’s reading this (and those 2 or 3 dads), that dads love and accept our ASD kids as much as moms do. They are a significant source of pride and joy for us. Please be patient with us as we figure out our roles and remember that dads celebrate, grieve, interact, connect, contribute, offer support, and love our kids differently than moms do. We have different motivators, needs, interests, and strengths. I know you have heard it before, but men and women are REALLY different!
Those different strengths, when harnessed and combined, can turn an ordinary couple into an unstoppable dynamic duo! I have found nothing in this world more powerful than two united, motivated, and engaged parents pursuing a similar goal. In my humble opinion, this makes all the difference and can drive change in significant ways.
Like every parent of a child with autism, my wife Lene and I were buried with decisions needing to be made after Hanna’s diagnosis in 2006: IEP’s, medication, dietary changes, funding issues, choice of interventions, speech, OT, ABA, PECS, etc. The sheer number of choices was overwhelming!! We buckled down as a team, spent many stressful nights strategizing and scouring TACA’s website for resources, and made the best decisions we could for Hanna. Fast forward two years and we had settled into a routine (or as close to a routine as one can get when navigating the ever changing tides of autism). Hanna’s interventions were going well and we were working our plan.
One night we were sharing a bottle of wine (one of many over the years) with our best friends Justin and Kristen Alderson. We all enjoyed running in races and triathlons and thought it would be fun to host a Run/Walk in our hometown of San Clemente, CA. In our discussions that night, we came up with the idea of putting on a race for a cause – autism. This would be a perfect way to provide hope to our household, utilize our talents for something with a bigger picture and hopefully unite and educate our local community around autism. What better gift for our daughter Hanna then to ensure she grows up in a community that understands and embraces children like her.
It was 2008, and with our best friends by our side, the four of us co-founded Hope 4 Hanna. Incidentally, Justin and Kristen DO NOT have a child on the spectrum. I told you, the greatest friends you could hope for.
We spent a year working with the city of San Clemente to develop a racecourse and venue for our resource fair, and getting the word out in the community. Our goal: To raise money for needy families living with autism, to promote awareness and tolerance, and to fund organizations with similar goals. It was important to us to create and fund programs and activities that were not covered by insurance, school districts or regional center. We knew many children needed treatments their families could not afford or access.
Since our “big idea” in 2008, Hope 4 Hanna has raised almost $200,000 and met our goal of funding organizations that support families living with autism, including TACA. The outpouring of positive support from our community has been and continues to be amazing. They have really stepped up and taken this challenge seriously and we are so grateful.
This year, we have renamed our event The 3rd Annual Trace 3 San Clemente 10K/5K/.5K Kids Run and Resource Fair, which takes place this Sunday, October 9th! In addition to the 2010 line up of events, 2011 features the family friendly Walka for TACA Superhero Challenge. Starting at 10:30 a.m., the Walka for TACA Superhero Challenge will offer an easy walk route, fun superhero obstacles, resource fair, parade of costumes, live entertainment and kids’ fun zone. If you are interested in attending, more info is available at hope4hanna.com and tacanow.org.
So where is this dad today? Five years into autism, and 3 years into Hope 4 Hanna, my perspective on everything has changed. My view of friendships, politics, school districts, marriage, insurance, family, kids misbehaving in public, parenting, etc. What hasn’t changed? My capable, loving wife Lene, and my best friends Justin and Kristen. Without these three special people, I would have never considered such a huge endeavor… So thankful I have them, and so glad I did!
Great post, Josh! Yeah, I have been in a unique position over the past year and a half because I have been un-employed. This has allowed me to be a huge part in my 2 year old son’s daily life. He was diagnosed at 18 months as being on the spectrum with PDD NOS and sensory processing disorder and speech delay. We also have a 4 year old daughter who was born with spina bifida. She basically only has bladder issues, but that has crept up this year during potty training so being home has allowed me to help my wife with not only my ASD son, but my daughter and 10 year old step son as well. We just found out last week that he has tourettes, ADD and sensory issues, but is not on the autism spectrum.
If, I had been working during this time frame, I would have not understood exactly what my wife goes through on a daily basis. Because I am here going through it with her, I definitely get it. Now don’t get me wrong, I need to work and want to work, but I feel like I have been truly blessed during this time of unemployment. We actually crated an autism non profit in July 2011 with my brother and sister in laws, who do not have any kids on the spectrum.
I do believe that most Dads do care and do want to be involved in their child’s life and deal with the ASD as well. Honestly, I think that the fact that many are removed from the situation that transpires during the day, due to working, puts them in a position where the Mom has to deal with certain things, but that does not mean that the dads are not willing or capable of doing so as well.
Great story! My son is 2 years old and just got diagnosted with autism 2 months ago, Our life, our diet is changing completly.
Josh is exceptional. Dads everywhere just stepped up a notch with him as their spokesman.
Thanks, Josh, for being a Dad.
My husband was struck by the same thing when we went to a presentation while dating and he asked, where are all the men? Bowled him over. Now he’s a stepdad who has taken the role of a full-time dad. Goes to appointments, meetings, etc. So glad to see you writing so well about this topic! Autism is a career-killer for women but it also affects men’s careers too. Sharing the ASD load will greater ensure family survival, both economic and emotional.Well done!