I have often contemplated if having a special needs kid makes for a special dad. I’d like to think so, but the truth is I still burp, need deodorant and annoy my wife, so it is likely that I am ordinary. But maybe that is what makes me special – the fact that I am ordinary.
How dads navigate the path of special needs is a miracle. Now, there is plenty of attention given to moms of special needs and that is very deserving of course. The problem is we dads sometimes disappear into the background. People forget that…
We hear and see the same things;
We will grieve for the rest of our lives;
We experienced the loss of a dream;
We held our breath many times waiting for a sign of life after the resuscitation of our kid;
We ponder endlessly about the future;
We feel anxiety about how the world will treat our kid;
We are frustrated with doctors, wheelchair suppliers and government bureaucracy;
We wonder if our marriage will make it and if our relationship will ever be the same;
And we still wake up in the morning years later, shell-shocked, wondering if it is all a bad dream.
I don’t think any dad of a special needs kid would profess a particular uniqueness, but we would describe an enlightenment that we have been awarded because we are on this journey. We know stuff, stuff we never thought would occupy our mind. None of us signed up for it, in fact if given the option I wouldn’t sign up for it again because I am weak – but I would never ever want to live life without my daughter, Sunny, just the way she is… Do you see the paradox?
special needs dad the mighty
I sometimes see other dads and their kids playing and I feel this ache, like a heavy piece of lead has lodged in my heart, stopping the blood flow. It isn’t that I am jealous because I love my daughter; it is the constant reminder of what is not. The “what I have” is precious, the “what I don’t have” is simply unbearable.
But when the alarm goes off in the morning, the world doesn’t wait and I am forced into the magnetic field that insists life moves on in the same direction despite the ache. I still have to go to work and contribute, which feels so odd when my parallel world seems like a different planet. I force myself to engage in incidental conversations in order to embrace the benign clockwork of life despite the sickening feeling of chaos – because I know if I don’t, I will drown in myself.
So what does it feel like to be immersed in the normal when there is nothing normal about my life? Bloody weird. It feels like breathing water instead of air.
I want ordinary but I don’t know how to be ordinary anymore. I guess that makes me special. Problem is I didn’t want special, I wanted the mundane, but I know myself well enough to know that if I had the privilege of mundane I wouldn’t even know how lucky I was. The irony is, for us to be truly aware of a privileged life, we have to experience the opposite and for our family, the “opposite experience” is not rewindable, it is permanent.
So I reluctantly embrace the title of “special dad” because being an ordinary dad seems like bliss, and relief from that lead in my bloodstream would be nice. As for my daughter, oh God I love her – and I would poo poo this blog entry and dismiss it as blah blah because no philosophical evaluation will ever change what it feels like to hold my daughter Sunny and kiss her cheeks.
This post originally appeared on JayMcNeill.com.
There’s no way you’d spot us in a crowd. We don’t have a secret handshake. But somehow, special needs parents always manage to find each other. Maybe it’s that unmistakable look of exhaustion and resolve many of us wear. Whatever it is, I’ve been part of this family for 20 years.
Even after all this time, I still sometimes stop myself and ask, “How in the world did I get here?” When my son was initially diagnosed with autism and epilepsy years ago, I didn’t know anyone else with a child like him. That was back in the dark ages, before the Internet. There were no websites or blogs to turn to for information and support. There was so much I didn’t know and so much I was desperate to learn; I could have used advice from a seasoned elder.
Now I’m that mom. The one with some mileage on her. There’s no road map to navigate raising a child with special needs, but here are some pointers I wish I’d had when I first set out on this journey.
1. You are the expert on your child. No one else. Not your child’s doctor, his teacher, his neurologist and certainly not your Great Aunt Gussie who raised 10 kids of her own. Listen respectfully to them, but remember they are experts in their own spheres, not yours. All of them –therapists, family, friends — go home at the end of the day. You are in it for the long haul, and you know your child better than anyone.
2. You are parenting a person, not “treating” a cluster of “symptoms.” When your child is first diagnosed, you’re going to hear a lot about the deficits — all the things your child isn’t doing. Don’t lose sight of the fact that behind the “special needs” label there is the same wonderful child you had before the diagnosis, who needs your guidance and love. There’s a saying so popular in the autism community that it is practically a cliché: “Once you’ve met one person with autism, you’ve met one person with autism.” Your child is unique. Yes, you will get all caught up in searching out treatments and therapies, but please take the time to enjoy him right now, because he won’t be a child forever. Don’t let your fears of the future rob you of the pleasures of the present.
3. People will stare. This will eat at you in the beginning. It’s natural to feel uncomfortable, resentful, even mortified. It is also a natural instinct for people to look at anything that’s a little out of the ordinary. Your child’s quirky behaviors in public may draw attention, and what if they do? Stop worrying about it so much. Who cares what strangers think? And I can promise you this: You will learn to never, ever judge any other parent whose kid acts up in public. Eventually, you will figure out how to handle people’s inappropriate questions. I’ll never forget how taken aback I was at a wedding 15 years ago when my husband’s uncle abruptly asked, “Is there any hope for your son?” Sometimes, people may imply that you just aren’t trying hard enough. Or they will offer unsolicited advice or press the latest miracle cure on you. Worst of all, they will talk about your child right in front of him. Don’t let them. And don’t you do it either. Your child may not be verbal (yet), but his ears are working just fine.
4. Take care of yourself. Really. I’m not talking about a trip to Canyon Ranch. A study released a couple of years ago found that autism moms have stress levels similar to combat soldiers. I know there’s nothing you wouldn’t do for your child, but you count too, and you’re no good to anyone if you don’t stay healthy and strong. Physically and mentally. Medication is there for a reason. No, not for your child. For you. Don’t be afraid to ask for help if you need it. Because as all special needs parents know, we need to live forever.
5. You will meet some of the best people you never wanted to know. Other special needs parents will not only validate your feelings and prop you up, they’ll be your best source for information. They are the ones who really, really get it. Embrace those fellow travelers — they’re your lifeline. Especially the wise-cracking ones. Your sense of humor will save you.
6. You and your partner/spouse/significant other are a team. Your child has no one else who loves him more. No question, having a child with a disability is stressful, but it’s imperative that you work together. Feelings can run high; you may each react differently to the diagnosis or disagree on treatment. Don’t focus on what might have been; focus on what you have together. Check in with each other frequently; keep talking about what you are feeling and experiencing.
7. Focus on your other children. When a child is diagnosed with a significant developmental problem, it affects the life of every single person in the family. It can be a big adjustment for siblings. Find ways-frequently-to give them your undivided attention. Let them express the full range of their feelings, in their own words.
8. There will be people who tell you that autism is a gift. Or that God singled you out to be a special needs parent for a reason. Don’t believe them. You weren’t singled out or chosen. What you are doing is rising to meet challenges and simply doing what every good parent does: giving your child everything he needs to thrive. My son has many abilities and strengths; he can be warm and funny and empathetic; he has an amazing memory; he’s a whiz with video games. But I’m not going to lie: Those early years with him were hard and scary. So is reaching the age of 20. His disability isn’t a gift. What is a gift is the joy he and his older brother bring to our lives.
9. Celebrate your child’s achievements, regardless of how they stack up against those of siblings, peers, relatives, fuzzy memories of your own youth or dreams you may have had for your child before he was born. Because there will be many. We waited years to hear our son’s first sentence, and it was a gem: “Mommy, snuggle me.” Your child is going to surprise and delight you, and you will never take any of those hard-won milestones for granted.
10. You will learn with utter certainty what matters most. Parenting a child with special needs will teach you about patience. Humility. Determination. Resilience. Acceptance. You will love your precious, beautiful child more fiercely than you ever thought possible.
This post originally appeared on Kveller.com as part of their series for Jewish Disability Awareness