“Special Needs Dads”–does anyone even utter that phrase, that title, the recognition of THEIR journey, their ache, their stress, and their infinite love for their special children??
I have gathered for you some advice from seasoned, experienced and grounded fathers, who, if they could sit across the table with you, would share these words:
From Joe Platnick, father to son, Stephen, age 19:
It’s probably going to be a wild ride
Since our son Stephen was diagnosed with autism 17 years ago, life has been a wild ride, like a roller coaster with its ups and downs. Parenting any kid is challenging, but the highs and lows can be amplified when you’re parenting a special needs child. They can also come along when you’re least expecting them and may be in the form of battles with insurers, a bad teacher, lack of funding for what’s necessary, long waiting lists for services or medical issues There’s not really any way of avoiding these, just be prepared and do what you need to do in your personal life to deal with the lows, whether it’s your faith, meditation, counseling or something else that works for you. Hate to start out my post by being negative…but have provided some positive suggestions below for dealing with this.
It’s a marathon, not a sprint
Once your kid is diagnosed, it’s only natural to do the equivalent of a sprint. Sprinting has many examples and may include exhausting yourself researching your kid’s disability, learning everything you can about special ed law, or going to every event and conference related to your child’s disability. While it’s important to do these things, particularly after the initial diagnosis, pace yourself and don’t burn yourself out so you’ll have the mental and physical energy to do all the right things for many years and for what will probably be the rest of your life. You don’t want to be that guy we’ve all seen at the olympics who runs out of gas at mile 20 and finishes the marathon doing 10 minute miles.
My wife Kathy, who always has great advice and perspective, talks about the importance of on- and off-ramps as you go through life’s marathon with a special needs child. Sometimes to maintain your stamina, you need to take a break from your personal life and go to the off-ramp. For many of us that can mean not replying to text or emails for several days, missing a party or two, or not being very sociable because you’re burned out. Taking that break is okay and sometimes necessary to recharge your batteries when times are particularly challenging, so don’t beat yourself up over it.
Keep a family-centric perspective
For our family, it’s always been a philosophy of doing what’s best for the family unit–not just what’s best for one family member. Over the years Kathy and I have known several families where one parent has focused exclusively on the special needs child, while ignoring other family members to the detriment of the family. There’s a reason the divorce rate is so high for parents of special needs kids, and this is one of the contributors as we’ve seen with several families.
A few weeks ago I heard a great message at church from Pastor Jim Stewart about Marriage in Real Time. One of the marital challenges he talked about was one spouse dumping their hopes, dreams and desires (and the resulting expectations) on the other, without developing a consensus together. This was such a great comment as we’ve seen special needs families where a wife or husband has unilaterally come up with their own hopes, etc. for their disabled child and expects all the other family members to comply. Worse yet when other family members don’t agree or perform at the level expected by that spouse, there’s often resentment and hostility throughout the family–a recipe for family strife and discord.
Having lived through this journey for many years, there are many pieces of advice I could give…but these three have been the most impactful on our family. I am happy to field any comments or questions about the above or other related topics…so feel free to reach out at jplatnick@cox.net.
From Rob Seely, father to Reagan, age 14:
- Don’t look too far into the future; there are so many things you may not have to experience. Your fears may not come to fruition.
- Don’t let the highs get you too high; and the lows get you too low.
From Mark Ryan, father to Trevor, age 28:
Your child will take you on a wonderful journey in life and open doors you would have never passed through.
You will meet some of your best friends.
Your child will teach you more about yourself and what’s important in life. Things that you thought you were so important take a back seat.
You will see life in a whole new way and that will be one of the best gifts for you.
Remember it’s not your child’s fault that he or she has a disability. Don’t forget that.
Most importantly, keep a sense of humor. My son was 3, we were in line at the grocery store, and he grabbed the woman’s breast next to me. He refused to let go and she just stood there. I grabbed his arm and shook it while he clung to it. Still to this day, 25 years later, I cant stop laughing.
From Khaled Al Khatib, life partner to Danielle, whose only son, Kai, age 14, has special needs:
Approach every situation with patience and love. It’s very hard to be patient, I know. Yet doing this will crate good energy with your child.
Look at your child as a teacher. What am I learning here? How can I grow?
Be present.
Set your priorities. I believe in family first. Other things will follow.
Coming in with a step-father role: Initially I was scared. Scared that Kai would not like me, or would not want me in the family. I had a big learning curve to understand him and work with him. We formed our own little bond over time, because Kai easily opened his heart to me. I have been intrigued by his loving and playful nature, and his challenging ways as well.
From Andrew Greskovics, father to daughter, Gigi, age 18:
You will have to go through the pain. No way around it. If you need help:
A) Religious person – Put your trust in God, etc.
B) Non-religious person – Talk to your family, friends, exercise, take walks, learn how to meditate, yoga, etc.
C) Do both…. :^)
“It is what it is”…Don’t try to figure it out and don’t feel sorry for them. Interact with them just like any other person.
Find time to do typical things with your typical kids.
Give your spouse a break. Take your special needs kid for a day so that your spouse can recharge his/her batteries.
Try to look at the positive things. For instance, no one is as loving and caring as my PW daughter. She has the most positive outlook out of all our children (even though she has so much against her).
Find time to take care for yourself. If not, you can’t take care of the family. Gym, sports, hobbies, etc.
Be stern with them but understand that there are times were you will simply cannot get anywhere with them. Put them in their room and let them cool down. Tough love.
After a while, things start to make sense and it becomes normal and fulfilling.
HAPPY FATHER’S DAY to all you amazing Special Needs Fathers out there! We recognize ALL you do, and we thank you for your steadfastness, support, involvement and provision. We are so grateful!
Hal Bogotch says
Thanks so much to Jessica Patay, Joe Platnick, & the other dads who contributed/commented! My daughter will be 17 years old this month (Aug. 2021). Not one single day has been easy. I face each day, take risks, make mistakes, & try to make things a bit better for my family. Connection seems to be an ongoing challenge. Also, lately, the thermostat. Love, courage, strength, patience, & mindfulness to all.
🙂