5 Things I Have Learned as the Parent of a Special Needs Kid
This past weekend, we got the news that Willie will be moving group homes. Again.
A couple of years ago Willie turned 21. Because of his age, he had to leave the group home in Statesville he had lived in for most of the time since his time at the PATH program in Butner. The Statesville home was for adolescents. Willie was now classified as an adult, and had to find an adult home.
Working with his the company that provides his care, we found a home in Catawba County, near Maiden, NC. That has been where Willie has lived since. It has been a struggle.
The team at Maiden had a lot of turnover and was led by an administrator who said all the right things but did almost nothing. Not a great combination. The staff working with Willie were constantly new, poorly trained, and inexperienced. Willie thrives with structure. He needs boundaries and expectations. One of the things that we have always said about Willie is that he will push new people. He wants to see what he can get away with. He wants to see what they can handle. If he trusts that someone knows what they are doing, he can be the sweetest dude on the planet. If he thinks that you are confused or incompetent, he will become aggressive.
You know that phrase “if you can’t handle me at my worst you don’t deserve me at my best”? Willie was doing that way before it became cool.
All this came to a head when Covid came. The isolation, the PPE, the staff turnover. It was all too much. Willie lost it, and ended up being taken to the Emergency Department in Catawba County after the police were called to his home. On Willie.
Luckily, there was a police officer who had a special needs cousin. He was able to help diffuse the situation and get Willie to a safe place, where his mom could join him. The company cleaned house, and has brought in dedicated and competent leaders. Willie spent some time at NC Start, a special program designed for folks like Willie who are in crisis. It helped.
And. The team at Maiden is still understaffed and under-resourced. They are able to meet Willie’s unique needs, but only just. There has been a need to find a place better suited to care for Willie.
And after months of looking, we think we found one. It is another home with the same company, but this one is designed for guys like Willie, especially those transitioning from state run programs like PATH. The staff and support should better be able to meet Willie’s needs.
One of the big bonuses is that it will be a house full of guys in their 20s. Right now, Willie lives in a mixed gender house with folks in all age ranges. We think that one of the reasons Willie may be struggling is that he doesn’t always look around and see people like him. Now, he will get that. I have joked that he now gets to live in a place with a bunch of other young guys, just like I did in college and his brother and I did in the military.
Willie gets to live in an autism fraternity house.
Willie was diagnosed with autism at 18 months old. He has been receiving some kind of therapy, intervention, or care since he was 15 months old. Meeting his considerable needs has been one of the biggest challenges of our life as parents. William and his disability has defined the life of our family as much as anything else, including my 12 years in the Army and experiences in Iraq and Afghanistan.
Parenting is challenging. It is the hardest thing that many of us will ever do. You are responsible for the life, welfare, direction and care of a whole ass person. It can be overwhelming.
And as immersive and stressful and joyful and life altering as being a parent can be, having a special needs kid turns it all up to 11.
Life teaches us who we are. Parenting shows us who we are. We can all talk about our values and ideas and priorities. Being a parent strips away all the bullshit. You live your values by what you teach and show your kids. And boy howdy, that can be a shit show.
Being the parent of a special needs kid does all that. Every day.
These are the 5 things I have learned as the parent of a special needs kid.
1st Thing I Have Learned as the Parent of a Special Needs Kid
Life is hard. But not equally.
One of the things I have said a lot over the last year is that hard times are never equally hard. The pandemic has been a major, worldwide event. I am nearly 50. And in all my time on earth, this is the first major event that everyone in the world is dealing with at the same time. Covid has traveled to every continent, and every corner of the world has been affected.
And while we are all sailing the same stormy sea, we are not all in the same boat. Differences in leadership, resources, and approach has meant that all of have had very different experiences of Covid. I have a friend who moved to New Zealand just weeks before the first lockdowns here in the US. She and her family are now able to live a life that is, for all practical purposes, the same as it was before Covid. They live with a risk so minimal it is practically nonexistent. Most of my extended family lives in Texas. Just this week, scientists announced that Houston was the first city in the world to report cases of ALL major coronavirus strains. And the governor announced that Texas was open for business - no masks, no restrictions, and seemingly no awareness or regard for people. Same disease. Different experiences.
One of the things you learn pretty quickly as a special needs parent is that you are navigating all of the challenges that every parent faces. Like all parents, you worry about keeping your kids safe, about how to guide them to a successful future, and you wonder how you can help them find long term happiness and contentment. You worry about schools and their health and whether or not they are eating enough of the right foods. You fuss over hair and bath time and finding their favorite toy when it gets misplaced. All the pressures that attend parenting are there.
And yet your lived experience is very different. When Willie first went to PATH we spent weeks jumping at every sound, ready to react to close the door or clean the mess. We had to adjust to not being on edge every second of every day. It was a huge adjustment. One not too dissimilar, in fact, from coming back from war.
As parents of a special needs kid we have had to recalibrate every aspect of what parenting looks like. We had to readjust our expectations of what success is. We have had to learn to give ourself grace. Because parenting a kid with a profound disability can be frustrating, and draining, and it can sap the energy and optimism of even the healthiest person. Because life is hard and parenting is hard and having a special kid makes it all harder.
Every time I got to the end of my rope with Willie. Every time I was frustrated and tired and annoyed. Every time I wondered whether I could take the next step or get through another sleepless night, I would remember something.
I would remember that life is hard. But it’s not hard equally. And as tired as I was caring for William, it was nothing compared to what it was like to BE William. To be constantly bombarded by sensory input. To have the wiring of my brain just laying about randomly scrambled. To never be certain where I was in space. To be overwhelmed by big feelings and not having the words to be able to even process them, much less express things like “this hurts” or “too loud” or “want more” or “I love you.”
Life is hard as Willie’s dad. It has never been, it will never ever be, as hard as being Willie.
2nd Thing I Have Learned as the Parent of a Special Needs Kid
The world is full of some amazing and wonderful people. And some real assholes.
Barb and I get all the credit for being Willie’s parents. And that is awesome. We have certainly been the ones who have been on the journey with him for the longest time. And to take full credit for how far Willie has come and for who he is would be to shortchange some truly remarkable people.
It would neglect Ms. Belcher, his preschool teacher at Fort Bragg, or Ms. Mayes, his teacher at Fort Bragg, who loved Willie and pushed him and showed him how to navigate school. They taught us what it meant to work as allies within the system.
Giving us all the credit would pass over Dr. Lin Sikich who first met William at a clinical trial at UNC when we were still at Fort Bragg and who took him on as a patient after the study was over because she knew she was a better option than the military doctors at Bragg. Giving us credit would ignore Lin’s amazing assistant (and our dear friend) Kate who showed us what lay ahead, and who held our hands (literally) as we went through IEP meetings and learned how to advocate.
It would pass over teachers like Gina and Julie and Kendra who come to work every single day to make life better for kids that a lot of people wish weren’t in the building. Giving us credit would minimize the impacts of speech and physical and occupational therapists like Ruth and Jordan and Kimberly who got excited for every single step forward. Giving us credit would overlook all the counselors and the school administrators and the regular ed teachers that got it.
Giving us credit would bypass Camp Royall, the most amazing place on earth. The one week in our lives we could be a “regular” family knowing that Willie was being cared for by people who loved him almost as much as us, and who moved heaven and earth to give kids like Willie summer camp.
Giving us credit would ignore the dozens of staff members at PATH and at Willie’s group home who have cared for him, and bathed him, and fed him, and who have been there for him day after day and night after restless night. All for $10 an hour.
It would pass over people like Michelle and Tonia and Sarah who have steadfastly been in Willie’s corner, advocating and searching for ideas and interventions that can make his life better.
EVERY special needs parent has this list. Hell, every parent. Raising kids is a team sport and we all have a list of the amazing people who come into our lives and gave a shit about our child when they don’t have to give a shit. The people who show up and then show out. The people who have fought with us and carried us and built us up. It’s just that when you have a special needs kid, your list grows and grows.
We are Willie’s parents. And we wouldn’t be without them.
You meet some incredible people as a special needs parent. You meet some assholes too. You meet people who stare and whisper. You meet people who will tell you that your kid needs to “get his ass beat” to learn some manners. You get people that will tell you that you are a failure and that your kid is disabled because you did something wrong, or because God has judged you, or because you haven’t done enough.
These assholes make a lot of noise. They get a lot of attention. They’re assholes. That is what assholes do.
The good news is that when you are a parent of a kid like Willie you learn that there’s a lot more wonderful people than assholes.
3rd Thing I Have Learned as the Parent of a Special Needs Kid
Progress is best measured in small increments.
Willie is 22. He is nonverbal. He has made some approximate vocalizations over the years. But most of what passes for “verbal” communication sounds a whole lot like whale calls.
He has never said please. He has never said thank you. He has never said stop.
He has never told us that he loves us.
And that has been hard at times. Willie has been getting some kind of intervention since he was 15 months old. For two decades we have done everything that we could possibly do. We have used devices and therapy modalities. We have tried every diet imaginable - gluten free, casein free, organic, whole food, raw. We have used oils and mists and incense. We have tried prayer and laying on hands. He has seen dozens and dozens of doctors. The list of medications he is, or has been, on is pages long.
I would honestly be scared to know how much money we have spent on Willie and his needs over the years. Enough that our entire adult lives have been spent in financial stress.
We have tried everything except chemical chelation (too scary) and having him sleep in a bariatric chamber (we could never afford it). Anything else that has ever been claimed as an autism treatment or cure? Yeah. Been there. Done it. Bought the t-shirt. Probably bought two.
And he still didn’t potty train until he was almost 11. He still needs help to dress and bathe and to eat. He probably always will.
When you have a special needs kid you stop thinking about big milestones. You don’t think about college graduation or grandkids. You don’t even think about reading or addition and subtraction. With Willie, I don’t even know that he will ever really know the alphabet, and I am fairly certain that even if he does know it, he won’t be able to tell us what he knows.
The normal signposts you look for as a parent - the things that tell you what you are doing is working, that your kids “get it” - all of these are gone. They vanish in the fog of disability.
You learn to focus on small victories. Today he helped his teacher take out the recycling. Last night he slept for 7 hours. Today he brushed his hair for 2 strokes by himself.
These are tiny steps forward. And every one of them is a joy.
Sometimes we all get too caught up in the big picture. We want to know when the pandemic will end and what life will be like in a year or 5 or 10. Who our kids will be. Who we will be.
Having a kid like Willie makes you slow that down. I can’t think about those things for him. None of them are guaranteed, or even likely. What I have is today. This moment.
Did Willie have a good day today? That is the only question that has ever mattered.
Having a special needs kid helps you see that progress is best measured in small increments.
4th Thing I Have Learned as the Parent of a Special Needs Kid
I have a hidden talent. I have learned over the years that I am not the only one with this talent. Even though there are a lot of us with this talent, it remains hidden.
I have veteran radar.
I can pick out a fellow vet in just about any social situation. It doesn’t matter what branch they served in, or when, or where. I can just look at someone and know. And not just the guys in wrap around shades and bushy beards and Grunt Style t-shirts. I know that the guy in the corner of the coffeeshop was in, and I can tell when that mom loading groceries in her car served.
Lots of vets can do this. There is just something about the way people in the military carry themselves. And even after 15 years as a civilian, it is often a comfort to be around someone who just gets it. Who knows some sense of what it is like to serve in uniform. Who knows what it really means to hurry up and wait, to be yelled at behind some bullshit, and to feel the comradeship of service with others.
There is something reassuring about finding that kinship in challenge. Having that community is vital to maintaining a sense of connection to something that defines your reality.
This extends to being a special needs parent. Like most autism parents, I can spot a child or adult with severe autism a mile away. There is always that moment when you lock eyes with their caregiver and give the little “heads up” nod. You know that struggle, you know that feeling.
When you are a special needs parent, people whose children are more typical often want to give you outsized credit. “It must be SO hard having a kid like Willie.” I mean, yeah, it is. But we are doing it. Every day. “I could never handle that.” Shit. You think I thought I could when I was 26 and he was born? If anyone had told me what I was in for I would have freaked the hell out. You get used to it. You do what you do for your kid.
And while these parents mean well, it can also be exhausting to always perform the role of a special needs parent. It can make you feel like you have to have superhuman patience and energy. And it can be draining to have to constantly say stuff like “he is worth it” and “he is the one teaching me” not because those things aren’t true (they ABSOLUTELY are) but because damn it, it is tiring.
When you are with other special needs parents you can be yourself. You can be honest. You can talk about how terrible it is to have to wipe a 12 year old’s ass, or give a grown man a shower. You can talk about how frustrating it is that Walmart caused another meltdown. You can talk about being tired to people who know what that really means. And you get to talk to people who know the joy of a kid pulling up their socks for the first time at 15 or who just learned to flush the toilet at 13.
You have people who will walk with you in the pain and the stress and the constant fear. Also the joy and the relief and the happiness that can come every day too.
You have your community. Your people. And that matters.
5th Thing I Have Learned as the Parent of a Special Needs Kid
The limit does not exist.
Okay. I admit it. I will be completely real with you. I love the movie Mean Girls. I think it’s great. One of the best teen movies ever. And I know that some of it is dated and some of it is problematic. And I will still watch it every time I come across it.
One of the climactic scenes of the movie is when Cady (Lindsay Lohan) stays true to who she is by… solving a math problem.
The limit does not exist.
Of all the things I have learned as a special needs parent, this one is the most true. The most consistent. The most real.
The limit does not exist.
There is a tired beyond tired. There were entire YEARS of his life that Willie never slept more than a couple of hours. There is a fatigue that comes from physical, mental and emotional exhaustion that I can’t explain. I never went to a military school that caused me to be that tired. And I went to survival school. Having a kid with special needs will push you to your breaking point, and past it. And you will still find a way to function, to care for them. You will find a way to do things you didn’t think were possible. You will look back and wonder how you did it.
The limit does not exist.
There is a fear beyond fear. To be a special needs parent is to always be afraid. Afraid of the present. Afraid of the next meltdown or struggle or frustration. Fear of change. To be a special needs parent is to be afraid for their safety. Willie will run out into traffic without fear or awareness. He is nonverbal and has to be bathed by others. I am sometimes gripped with the fear of how easily he could be exploited. Being a special needs parent is to constantly be afraid for the future. What happens when he leaves school? What happens when he is an adult? What happens when Barb and I die? To be a special needs parent is to find new and novel fears. And to worry. ALL the time.
The limit does not exist.
There is a love beyond love.
Through it all, through the tears and the fears and the pain, through the fatigue and the worry and the money, through the small wins and the losses that feel enormous…
Through all of that comes a single truth. The only truth. I love this child. I love who they are. I don't love autism. I don't love how much he has had to struggle.
But I love William.
I love the way he grins when he thinks he has gotten away with something. I love his random belly laughs. I love the way he leans his head in and places it on my shoulder. I love the way he closes his eyes and looks away when you tell him something he doesn't want to hear. I love the way he fights just to make it through the day.
I love Willie because when he smiles, it strikes a tuning fork somewhere deep inside my soul. And my soul smiles back. And because of that soul smile I know that I will fight any fight, bear any burden, and pay any price to help make his life better. Without hesitation.
That is the depth of my love for him.
The limit does not exist.
We all have someone or something in our life that causes our soul to smile. Maybe it's a special needs kid. Or even a regular kid. Maybe it's a partner or a friend or a soulmate. It could be God or your calling. It may even be an idea or a passion.
Whatever it is, let it fill your days with purpose, your head with resolve, and your heart with love. Let it provide connection and community for you. See the joy in small moments, and the giant leaps forward that come from little steps.
Find what makes your soul smile. Nurture it. Even when it is hard, you will find a path. Even when it feels impossible, you have the strength to take another step. This is the power of a soul smile. It is the power of love to change us and, in doing so, change the world.
The limit does not exist.
Willie taught me that.