I’ve had quite a few conversations with fellow special-needs parents over the last few months, which have made me introspective about the things I’ve learned in my years of disabilities parenting. I sat in a pediatric rehab unit gym this morning and watched Truman crush it at occupational therapy, and I had the idea that perhaps I should write a post specifically about what I learned, what I did, and what I’d recommend based on my experience.
My attitude toward unsolicited advice of any nature is “No thanks.” And also, “Please leave me alone,” and yet, here I am, typing away, with the important distinction being that a bunch of people HAVE asked me for advice. And there’s the fact that I’m not tying you up and forcing you to read this. Feel free to keep scrolling. Or go read something else! You do you, sis.
Before I begin, a caveat. No two kids with special needs are alike in their abilities or circumstances or needs. What has worked for us may not work for you. I do not claim to be the expert on everyone’s situation. I know essentially nothing about raising a medically-fragile child or handling seizures or Oppositional Defiance Disorder or so many other things that so many other parents face. I can only tell you about my experience. And if you want to read it, go for it.
So, in no particular order, here are some possibly useful things for people facing disabilities parenting to know:
Getting a Diagnosis is a Good Thing
Sometimes people don’t want to get their child assessed because they don’t want to know. They don’t want the label or the stigma. They want to ignore the issues and pretend they aren’t there, which I get. It’s human to hope that a kid will outgrow their deficits.
Jack was diagnosed with his rare syndrome at seven months, and with autism at two and a half; both these diagnoses left me utterly gobsmacked. He was our completely precious baby boy! We loved him perfectly! How could he have these huge lifelong issues?! When he was little, I didn’t like telling people about his diagnoses because I wanted them to see Jack as I saw him–for who he was–not for his disabilities. But time taught me that the more that people know about a kid’s special needs, the more understanding and helpful they are. When we have more information, we as humans are more aware and less judgmental.
An example of this happened at the park when Jack was about three years old. The playground was crowded that day and Jack was at the top of the slide, ready to go down. Meanwhile, there was a backlog of kids on the slide. It was a child’s version of a traffic jam. Waiting has never been in Jack’s wheelhouse, so he started kicking the little girl who was closest to him. He was above my reach and I watched in horror as his sneakers made contact with the top of her head, her back, and her arms. The girl’s mother started shouting at Jack to stop.
The clogged slide cleared out and as the girl slid down and out of Jack’s reach, I apologized to her and her mother and told them about Jack’s autism. The mom instantly transformed. She went from angry to compassionate in a split second and said, “Don’t even worry about it. She’ll be fine. She sees worse with her brother every day.”
I wasn’t trying to excuse Jack’s bad behavior. If my child were being kicked by Jack’s huge hobbit feet on a slide, I’d be upset too. I was trying to provide context, even as I worked to fix the situation, and this mother responded with so much grace and forgiveness.
In the same vein, having a diagnosis opens doors for accessing school, medical, psychological, and supported-living resources which can dramatically help your family. When each of my three boys who are on the autism spectrum were diagnosed, I felt strongly that nothing had changed. They were the same boy before and after the diagnosis. What changed was that we as parents were now empowered to get them the help they needed, which leads to this point…
Behavioral Health Resources are a Critical Piece of the Treatment Puzzle
There is only so much that a school, or early intervention, or a pediatrician can do to help a kid with behavioral health issues. I was resistant to the idea of having my kids see a psychiatrist because I didn’t want to medicate them. I’m going to be frank with you, here. No one births or adopts a baby, kisses their heads, and thinks, “I hope one day I can give you mood stabilizers, SSRI’s, or antipsychotic drugs.” It’s no one’s dream. But the reality is that these types of medications are a gift from heaven which can help your child cope, function, and thrive.
If you don’t see prescription drugs this way, again, try all the oils. Try all the natural treatments. Use whatever alternative approaches which strike you as viable. If they work, great. But if they don’t work, it’s okay to go outside of your comfort zone and try engineered, tested, and controlled medications.
It’s silly that in the year 2019 we still have biases against medication for mental health issues, when we don’t judge people who use insulin, chemotherapy, or blood pressure meds. I mean, really. Why do we hold internal resistance to pharmacology which improves people’s lives? My dad, a gastroenterologist, was a major fan of prescription drugs as modern miracles, which is evident in one of his favorite catchphrases: Better living through chemistry.
His theory was that we don’t have to suffer needlessly through pain or other symptoms which Western medicine has the ability to alleviate. I have always felt that my pioneer forebears would totally have gotten epidurals if they’d had that option. I’m 100% certain they would have used antibiotics to treat their kids’ ear infections and strep throat. I descend from people who believe that modern medicine is proof that God loves us. The end.
And yet, because Jack’s brain and metabolism is so radically different that most people’s, we have had limited success with his medications. They provide subtle help with his mood and behaviors. They do heal his ear infections and treat his chronic gastric concerns. They weren’t a magic bullet that cured all our problems, but they were and are a part of the treatment that help Jack live happily.
Medications have been life-changing for my other sons. I can honestly say that anti-anxiety meds have saved us and allowed my kids to live the big, amazing lives they were meant to live.
Therapy is Really Important
For the last fourteen years, we have been continuously involved in regular therapy of one sort or another. Behavior therapy allowed Jack to be potty trained and to peacefully coexist with his then-infant brother. It didn’t magically fix all our problems, but it gave us the tools and steady growth to face them for another day.
My younger boys have participated in social skills classes, speech therapy, and occupational therapy, as well as working on occasion with a psychologist to learn strategies for progressing. There was a season of my life where therapy controlled our family. It was omnipresent. It was expensive. It was exhausting. But without it, we wouldn’t be here. My boys changed through therapy. Our family learned from therapy. It held our hands and led us out of darkness and hopelessness to a big, bright, better present.
Don’t Compare Yourself to Other Parents
This is stupid cat-poster advice that is actually life-changing, if you can fully absorb it, believe it, and practice it. And it’s the sort of thing people probably said to me over the years, but which I didn’t internalize until I had my first legit spiritual journey a few years back. I didn’t want to compare myself to other parents, but I did it anyway, both subconsciously and overtly.
I used to hold so much contempt for parents of neuro-typical kids. I realize that this makes zero sense, but I would look at people and think, “Do you even know how lucky you are and how easy you have it?” This is a terrible way to look at people, on many levels, most especially because you really don’t know what a person is up against simply by glancing at their life from the outside.
I even compared (and condemned) myself in relation to other special-needs parents. They seemed savvier than me. They had more energy. Their kid was special, but not aggressive/nonverbal/beyond-the-pale special. Their houses didn’t look like an orphanage because their kid wasn’t utterly trashing the place. Their kids could read and talk, didn’t smear poo, didn’t hurt siblings, could travel by car without kicking out windows or attacking the driver.
The bottom line in that no comparison is healthy. It really is the thief of joy. There is nothing positive that comes in comparing lives because all of us are living a divinely-curated experience to maximize our individual growth. When I decided to offer my broken heart on the altar, God allowed me to see that my life was exactly what I wanted and needed, and which would effectively unleash my personal potential.
With this perspective, how could I possibly want anything other than my particular life? And how could I possibly compare my unique kids to other people’s kids, who have their own set of personal hurdles to overcome? Recognizing my life as my ideal growth model was a game-changer. I have a sinking feeling I keep using this phrase. Ugh.
Give Yourself Permission
a) To Grieve. Your child is beloved and amazing, but they’re not what you expected. You have to allow yourself room to mourn what you hoped for in your child’s life. Read that stupid “Welcome to Holland” poem, cry, stress-eat, and scream. This is an important space to occupy before you can more forward.
b) To Care for Yourself. Everyone will tell you to put the oxygen mask on yourself first before helping others. The analogy is overused because it works. Special-needs parents’ needs tend to come last because everyone else’s needs are so pressing. But in order to continue to care for your people, you need to be healthy, present, and okay. Jeff and I religiously held a weekly date night for a season during the worst of our child-raising years. It was difficult arranging and paying for childcare, but it saved our sanity and allowed us to breathe before returning to the crucible. Eating ice cream at the end of the day, retreating to Netflix for a blissful hour, or engaging in a hobby that has nothing to do with kids or disabilities isn’t just refreshing, it’s restorative. Remember the self-care, guys. You need it.
c) To Set Boundaries. You may need to step back from outside obligations which you once handled easily. You may need to limit exposure to family events or other large groups. You may have to change the way you interact with the public–because of behaviors, sensory sensitivities, or potential exposure to illness. These things are all par for the disabilities-parenting course. It may be hard for outsiders to understand why you are drawing back or setting limits or changing the way you do things. But you have to keep your family’s mental health intact, and you can’t do it while projecting an elaborate facade of normalcy. Which leads to…
So you don’t want to write about everything that’s ever happened to you and put it on the internet. I can’t relate to this. Haha, I’m kidding. I actually really dislike the fact that writing and posting about disabilities parenting opens me up to criticism and judgment. But I do it anyway because God told me to do it, and when I whined about not wanting to keep doing it, God told me to keep doing it.
While I complain a good deal about writing things I don’t necessarily want to write, I can honestly say that I’ve absolutely learned the value of being vulnerable and humble.
Vulnerability opens us up to connection with other people. David Sedaris said, “Usually it’s the worst thing you can admit about yourself that most people can relate to.” I believe that people read this site because I don’t hide the difficult things. I have accepted that being open is scary, but it’s how we connect to, teach, and lift each other.
Humility is vulnerability’s less secular sibling. To be humble is to open ourselves up to what God has planned for us. I did not start my SN parenting journey in a humble place. I thought (wrongly) that God expected me to figure it out on my own and that a good mother earned her blessings and salvation through “successfully” raising her children. I want to shake younger me’s shoulders and say, “Sis. Duh. It doesn’t work that way. Go take a nap and snap out of it. Then we’ll talk.” At which point, we would have a heart-to-heart about humility.
When (about three years ago) I turned everything over to God and begged for Jesus to save us, THEY SHOWED UP AND CAME THROUGH. Everything changed for me. I reaped the power of my covenants. I tapped into the strength of the Savior’s Atonement. My Heavenly Parents released a deluge of revelation, peace, and wisdom into my heart and my mind. All of this changed my parenting life. And me.
Some Things Aren’t Going to Get Better
While my younger boys have had tremendous growth through meds, school, therapy, and just plain maturing, Jack’s trajectory is different. For some kids who are more profoundly impacted by their disabilities, there isn’t necessarily going to be a day when they stop having toileting accidents, or stop running away, or stop knocking holes in walls.
I once had someone tell me that it doesn’t get better. She was a mom with an adult son who was strikingly similar to Jack. This was actually THE MOST FREEING advice. It allowed me to let go of chasing endless leads which led nowhere. It let me stop spinning my wheels. It gently allowed me to realize that Jack’s life wasn’t going to be in our home, and that was okay.
Puberty is a reckoning for special needs families. Once-difficult behaviors become outrageously impossible. Kids become bigger, stronger, sexually inappropriate, and unmanageable. This may not apply to you, but I’m writing it for those who see their family in this description. Don’t think you can parent away the effects of puberty plus mental disabilities. There are some things you can’t fix. I know you already know this. But I’m here to lovingly say, “You can’t fix everything.”
To Be Continued…?
I’m not sure that I’ve covered everything I should have in this (super long) post. It’s broad and vague, and yet weirdly specific in other areas. Sheesh. If there’s something you think is missing, leave a comment and I’ll write an Unsolicited Advice Part II.
Meanwhile, it’s March now, which means winter is dead (to me, anyway) and I’m looking ahead to spring.
Cheers, dear ones.