And sometimes that line is dashed, dulled or moving.
She’s only two-years-old. And as often– and as readily– as I ask her to get her fingers out of her nose, I ask her to watch/teach/cajole her brother. The absurdity of it hit me yesterday in line at Target. Francie played at the petri dish of germs (a.k.a., water fountain) near me as I waited for the cashier to finish totaling our usual order: frozen waffles (breakfast), frozen chicken nuggets (lunch) and fruit snacks (bribery). Will took off for the automatic double doors. Out came my matter-of-fact request, “Francie, please watch your brother.” A seemingly simple request. But so difficult that sometimes I can’t even manage it.
This is not an essay about how my devilishly handsome, 4-year-old son is broken. It’s not a “poor me” piece about how hard it is to raise a child on the autism spectrum. And it’s also not a one-sided praise piece of my daughter. If you spend any time with Francie and me you’ll know I make no secret of it that she was born to challenge me. My girl, my arch rival.
Will is not ‘neuro-typical’. Either is his sister. Her words, thoughts, comparisons are advanced. (This is where you mutter, ‘like mother, like daughter’. ha!)
I know that because of Francie I will be on a news clip in 30-years. The internet will show one of two things: Either me, beaming with pride, as she heads a crew of astronauts into space. Or me expressing shock– not that my daughter was able to orchestrate a multi-billion dollar drug ring out of Eastern Europe— but that she got caught.
She’s a dare devil and a cuddler. A fashionista who refuses to brush her hair.
And as capable as my Francie is… I know I’m asking a lot from a little girl who isn’t even three.
I am asking my daughter to understand what it means to be autistic. I am asking her heart not to break when Will (whom she calls, ‘Brother’– although from her mouth it sounds more like ‘Brudder’) ignores her frequent, pleading attempts to play. Right now, when she throws her arms around Will, and he doesn’t squeeze back, Francie just hugs tighter. But I can’t expect that she’ll never give up.
Francie and I talk about it. We have talked about it as long as the word “autism” entered our home. She has heard that Will’s brain works differently than her brain. She has been told that it isn’t that he doesn’t want to answer her, but rather that sometimes he can’t answer her. I remind her daily that Will loves her. I make them tell one another. She looks into his dreamy brown eyes and passionately declares, “I love you, Brudder!”. And Will, often avoiding eye contact and speaking flatly says, “I love you, Francie”.
I have started looking for children’s books that explain what it means to be on the autism spectrum. But yuckity, yuck, yuck… most of them show an odd, angry and withdrawn weirdo. And I can be certain that is not what Francie thinks of Will.
Francie thinks the sun shines because of Will. And when you hold someone up high, it makes you feel even more special when you can tell them what to do! ha. My girl loves to correct her brother. Many, many times each day, I remind her that I am the mother; she is the toddler. Francie knows the punch-line by heart: “Who likes a tattletale?”, I ask. “No one,” she says plainly.
And so here is where the parenting gets tricky: I ask her to take care of Will… but I can’t allow her to tell him what to do. I don’t want her reminding him that his prized possessions (stuffed animals, Lovey and Zoe) have been taken away because he refuses to use the potty. It infuriates me. He doesn’t need to be scolded twice or humiliated.
I ask her to stick by his side, but then expect her to disappear when it’s time for him to work. Francie loves his ABA (applied behavioral analysis) facilitators who are always (yes, it seems like always) at our home. And I realized I’ve been expecting a toddler to know how to politely excuse herself before she’s done having fun– so that she’s not in the way of her brother’s lesson plans.
But yet as honest as I am with Francie, I’m leaving out the truth. And that is: I need Francie. I need her help. I need her to make sure that she always takes care of ‘Brudder’. It’s a lot of responsibility to place on those tiny toddler shoulders. But hey, we’re talking about Francie here. It’s why she’s my confidant. It’s why she’s learning to communicate like me– with the crisp sharpness of sarcasm. It’s why I need to know that she can roll with the punches. Because I need to know that Francie can take care of Will.
And I pray that someday Brudder will take care of her…. because I’m hoping we’re preparing Francie for amazing adventures.
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.
Catie is great at teaching, riding her adaptive trike, being funny, keeping the peace between her siblings, and just being nice. That is how her younger sister proudly describes her. Catie participates in gymnastics and challenger soccer. Catie loves to read and write. She wants to be a teacher when she grows up.
Catie also has ataxic cerebral palsy. It makes it feel like she is wearing socks on her hands while trying to button buttons, tie shoe laces, write with a pencil, and other fine motor skills. Ataxic cerebral palsy is an interruption of muscle control resulting in balance and coordination difficulty. Sometimes she stumbles, so to prevent that she uses braces on her lower legs and a walker. Catie attends therapy to make the muscles stronger and improve her motor skills.
Think of the brain as a series of pipes. The brain damage or cerebral palsy is like a clog in the pipes. The brain then will create new pipes or pathways in the brain to accomplish what it needs. It’s why Catie was able to learn to walk. Her brain created a different path around the damage for her to learn to walk.
Catie was born with cerebral palsy. It makes her sad when she focuses on the ways she is different from other kids. The beginning of each school year brings some anxiety for Catie. How will the kids react to seeing her with her walker and braces? Catie and her mom talk to the class about ataxic cerebral palsy, what it means in her life, and invite her class to ask questions. Kids at Catie’s school are eager to help her when they can. That is not a big surprise as she has always made friends easily.
Catie’s mom is proud of how she perseveres, which means she keeps trying when things are difficult. She believes Catie’s mind is like a treasure chest. She has a wealth of knowledge and understanding locked away in the box. Doctors, therapy, medicine and hard work are the keys to unlock the box. Some days it feels as though they found the right key to open the box and other days it feels as though they have no keys and the box is locked tight.
Maddox was born with cerebral palsy, an autism spectrum disorder and Duchenne’s Muscular Dystrophy. Maddox has high muscle tone (too much tension in his muscles), particularly in his right side caused by his cerebral palsy. That is why he walks with a walker and uses a wheelchair for distance. His Duchenne’s Muscular Dystrophy is a “low tone” disease. The MD will cause muscle degeneration over time and he will become wheelchair bound. Maddox is also on the Autism spectrum, which for him means eye contact is difficult and he needs structure. He can also get stuck on topics and sometimes repeats things.
July can pull Maddox in his manual wheelchair. She can also open doors, drawers and do light switches. Maddox can brace on her and pull himself to standing. July also has a calming effect on Maddox. July allows Maddox to be the kid with the dog, rather than the kid in the wheelchair. Maddox has lots of friends at school who love to assist him when he needs help.
Maddox plays soccer with Sporting Blue Valley in their TeamSoccer program. He plays Challenger Football and rides horses at Heartland. In the past he has been the 2012 Goodwill Ambassador for the State of Kansas for the MDA, the Fire Fighter Ambassador and this year he was an area Shambassador for shamrock sales.
Maddox loves transportation, geography, museums and national landmarks. He is a huge fan of Abraham Lincoln and has been to ten Lincoln National Landmarks.
If Maddox has an interest, his family helps him figure out how to make it work. When Maddox wanted to play soccer and football, his mom found teams that play on fields which accommodate his walker. When the family wanted to travel to Vietnam, they didn’t let it stop them that Vietnam is not very handicap accessible. If it is something worth doing, they just do it. They refuse to let disabilities stand in the way of having a great life.
When you were about 11 years old, what did summer vacation mean to you? Did it mean freedom – you and your friends, riding bikes all over the neighborhood? Staying out until dusk, riding around until your parents yelled for you? Riding a bike is pretty much a childhood benchmark, a shared history…..but not for every child.
Meet Abigail, an 11 year old spark plug. Abigail has Down Syndrome, but that doesn’t define her. She is a loving, playful child that treats everyone as a friend. When she was little Abi had a bike with training wheels, but she has since outgrown it. Abigail needs an adaptive bike for balance because even the slightest bump can cause a fall. Still, if you ask Abi, she’ll tell you how she wants ride all over the place, all the time…just like every other child. Variety’s generous supporters and partners have made her wish come true. Still, there are so many other children like Abigail. If you would like to help get other kids riding, contact us for information.
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
Variety Gold Heart Pin sales resume at local KC Theatres today!
Due to popular demand, Variety Gold Heart Pins featuring the Minions return to all B&B and Cinemark theatres Theatre locations today. For $3, you can bring home an adorable keepsake while supporting kids with disabilities.
Gold Heart Pins will remain on sale through July 16, which overlaps with the opening of the new Minions movie on July 10!