11 Truths of Special Needs Parenting

It’s been ten years since our son Aidan was diagnosed with Autism Spectrum Disorder. Since then, no single thing has impacted our family more. We are defined by our experience as a special needs family. There’s no way around it. There’s been no miraculous story of our child’s recovery. There’s been no “cure.” Just ten trips around the sun as a family on a unique and challenging journey.

Nothing fragile has survived.

All that’s left now, is made to last.

In 2016, my wife Annette and I founded Care For Us, a nonprofit organization that provides free individual and group counseling for caretakers of special needs children. Through our own experiences as special needs parents and in our engagements with countless families on the same walk, we’ve learned some foundational truths about what it takes to live this life without falling apart.

Spoiler alert. It’s not easy.

In an acknowledgment of the journey many of us are on, and the miraculous people we’ve learned from walking it with us, we wanted to share a few things so that others might be able to thrive beyond what the limitation that their unique journeys might allow, if not for a healthy mindset, and a few nudges from those further down the path.

So, here they are. Our 11 Truths of the Special Needs Parenting Journey. 10 is tidier perhaps. But tidy really isn’t our style around here.

1-Acknowledge that this is your journey. You didn’t ask for it, but it’s yours to walk. And it’s going to be a long, long walk. Find comfort in surrendering to the task. Denial only puts distance between you and those who need you to walk it with them.

2-See yourself in the service of others. See yourself in your children. This work is exhausting. If you can’t see the care you give to your children as a form of caring for and honoring yourself, your tank will run dry quickly.

3-Don’t run from the suffering. Cultivate the ability to be with people who are beyond your help. If a cure for what impacts your child is possible, great. Do what you can with what you have to pursue it. But if you secure your fate to a cure, an end through which all your troubles are over, you’re investing everything in a potential child and ignoring the one you have in front of you.

4-Caring for yourself is caring for your children. There are nearly endless obligations to help your children. Most parents if given the choice to invest in care for themselves or care for their children will always choose the latter. Extreme selflessness sounds admirable. Trust me, it’s not. Because hero’s don’t scale. And you’re going to be at this for 60 or so years.

4.1. If you don’t know how or where to start, you can start with us by clicking the link at the top of the page.

5-Seasons of hardship expire. Behaviors rarely last forever. And when they do, your ability to deal with them adjusts to accommodate them. Seeing any given difficulty as temporary is important. Extending periods of acute hardship forward in perpetuity in your mind, will break you faster than anything.

6-Celebrate every bit of progress. No matter how small and no matter how long it takes, take the time to acknowledge the wins. It takes no effort to notice the losses. They’re everywhere in this life. If you aren’t intentional about noticing the wins, they get crowded out.

7-Lift up your partner. Be kind and caring towards those on the journey with you. This life is hard. Let their mistakes slide. Appreciate the effort they give. And find ways even out the load. The life itself needs no assistance pushing people down. So, lift them up. No one else will know how.

8-Make your world as big as you can. Be open an honest with your journey as you are comfortable with being. Lights on, windows open if you can stand it. No one worth anything sees shame in what you’re dealing with. Never forget that this journey, well walked, is an example to others of how to live a purpose driven life. So, find purpose in your example. And fight the urge, at any cost to close in on yourself.

9-Fight the Good fight. Know your rights. Know what’s best for your child. But make a conscious choice to fight FOR things instead of against them. Things rarely change for good by forcing action. Things change for good by eliminating resistance to action. Nothing eliminates resistance like leading people to what right looks like and making it easy for them to follow.

10-Find your faith. Whatever it may be. You have to see your journey as a part of something bigger than yourself. Bigger than those walking it with you. Bigger than your child. None of this started here, with you. And none of it will end with you.

11-Be grateful for every second of it. Be openly, irrationally and vocally grateful for the experience of raising your child. You have to say it before you believe it. You have to believe it before you see it. But the simple act of giving thanks is illogically magical. It’s a universal truth of the human experience.

 

For more on our story, click the video below. For information about how to connect with or support Care For Us, click the menu above.

 

Gracist

A woman once asked my wife, if we knew then what we know now about our severely autistic son Aidan, would we still have gone through with it. It of course being him. The answer to that question for most emotionally healthy people, is of course, yes. The woman didn’t really know any better, I guess. She was young. With no family yet. And she didn’t really grasp the fact that she was asking another woman if she’d rather her child had never been born. My wife gracefully brushed it off, only bringing it up to me in passing the next day. Continue reading “Gracist”

Our Story: Part 4

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-Sean and Annette Hughes are the founders of Care For Us, a non-profit organization dedicated to helping special needs parents and their kids be the best they can be. This is Part-4 of a series chronicling their story. For previous posts click here.

Her Story

The days after Aidan’s diagnosis were a blur. I felt sick to my stomach every day. I avoided seeing or talking to anyone because I couldn’t speak without crying. I was counting the hours until Sean would get home. When he did I could immediately see a difference in Aidan. He was very relieved to see his daddy and I realized how confused he must have been. My oldest cried every night he was gone but he understood where he was and that he was coming back. Aidan would start crying and wander around saying “where he go, where he go.” He had regressed very quickly with Sean gone. So when he ran to him and said “daddy’s home” my heart leaped and for one brief moment I wanted to believe it was all a mistake and that he would be fine now that his daddy was home. That’s not how it went though.

The next few weeks were filled with trying to keep things as normal as possible for the kids. It was the holidays after all. We did all the things that Christmas that I didn’t  think we would have been able to do with Sean gone and me with a baby, 2, and 4-year-old. On the outside things looked pretty normal. On the inside we were trying to make sense of our new normal. Yes, he was still our same little boy that he always had been, but he couldn’t talk anymore and he couldn’t sleep anymore. It would take hours to get him down and some nights he would just wake up in the middle of the night and be awake for the rest of the day. We didn’t know this was a common issue with kids on the spectrum. It was one of the many things no one thought to explain to us. We were left to figure it all out for ourselves. Even then, only seven years ago, the medical community was still very divided on the medical issues associated with autism. So we turned to the internet-scary- and to other parents who were farther along on their journey.

We had early preschool screenings, ABA screenings, pediatric specialist appointments and we had to fit it all in before Sean headed back to Iraq. Doing it on my own would have been next to impossible in my exhausted state. Just figuring out the insurance aspect of it alone was a nightmare. We were fortunate because of Sean’s active duty status that we had Tricare. It covered everything. It was figuring out how to enroll in the specific programs that took skill and patience. My son would need speech, ABA, OT, and PT. I remember thinking over and over again that without insurance, this would be impossible for anyone. What in the world do the people who don’t have it do? Who is looking out for them? How about the single moms? Or the families where both parents worked multiple jobs? It broke my heart just thinking about it.

We were able to get through it though. And soon after Christmas Sean went back to Iraq.

It took three months from the time Aidan was diagnosed to when his first early intervention services began.  He started special education preschool six weeks after his third birthday. It took another month to start speech and occupational therapy and another month after that for ABA therapy to start. It had now been over a year since I said the word Autism out loud. A whole year had gone by before I felt like he was getting the help he needed. I’ve heard over and over again people talking about the over diagnosis of autism and criticizing the push for diagnosis from over sensitive parents and the stigma of labels, blah blah blah. Here’s the truth. If you don’t get your child in need diagnosed, you cannot get services. So pushing it off, to see if they will “outgrow it,” only means your child is not getting the help they need to be the best person they can be. Let someone qualified tell you they don’t need help.

As for labels? Labels are what you make them out to be. My son was diagnosed with autism. It does not define him. It is not all he is or all that he can be. It has impacted all of our lives, but that does not have to be an absolute negative. Not getting him the services he needs would be.

Soon, my husband would be home for good. And the rest of our journey could begin together. this was our new reality. My only regret, is that we could have started sooner.

His Story

It was really hard being back. Hours earlier I was planning missions in a war. Now I was laying with my son, trying to get him to sleep. Which he just wouldn’t do. It would take hours. I would lay with him and he would thrash and flop around. He wouldn’t talk to me. He wouldn’t talk to anyone. I would lay there in the dark, slowly sinking into the darkness with him.

By the time he finally slept, the whole house was dark and it was the middle of the night. But I was still wired. I was out of sorts from the time change and all the other differences. I couldn’t sit still. I would walk down the street to the park to run laps or do table jumps long into the night and into the morning. One night, while doing box jumps onto a concrete picnic table, I missed and ripped open my leg. I jumped for a little while longer until I realized how bad it was. There was blood everywhere. It was splashing in a puddle on the table as I jumped into it. So I stopped. I limped over to my car and drove myself to the hospital. They stitched me back up and I was back at it the next night. I was trying to be happy to be home, but I was stuck in between. Lost.

We got through what seemed like an endless list of appointments. It was good to stay busy and keep my mind off things. And it was good not to miss Christmas. I can’t imagine how that would have been without me there. After it was over though, it was time for me to go back. I don’t remember saying goodbye to the boys. But I remember my wife dropping me off in the minivan we had bought just before Ryan was born. It was the middle of the night, on the beach behind my command in Coronado. For the rest of my life I will remember the window of the car rolling up after I kissed her goodbye. I have trouble remembering a lot about that time. Large blocks are just gone. But not that.

Back in Iraq, I settled back into the routine. I stayed busy. I tried to keep my mind off of my family. We kept working nights and doing our thing. But I couldn’t sleep. At all. The fatigue started to get to me. I could feel myself shutting down. I remember one day, a slow day where we didn’t have any work, I looked at my side arm in my desk drawer and for just a second and wondered if that wouldn’t be better for everyone. I was too tired. And going home would be no relief from any of it. The thought passed though. And I never had it again. Not before. Not since. I only bring it up to make the point of how far I’d dropped from where I was. That was the bottom.

It wasn’t long after that day that one morning, while trying to fall asleep in my blacked out trailer, I noticed a stack of CD’s piling up next to my bed. The church Annette started dragging me to before I deployed was sending me recordings of the weekend messages. I hadn’t opened any of them. In an act of thorough boredom and fatigue, I opened one up and put it in. When it was over, I put in the next one. And then the next one. It was hard to describe how they made me feel. I didn’t buy the message. I never had. But something felt comforting about watching them. I didn’t feel alone. And the darkness felt less so. So I kept doing it, until finally, I drifted off to sleep.

I kept it up for the rest of the deployment. I had a couple of dozen backed up since I left. So I would watch them and fall asleep each morning. And each day sleep got easier. Until finally, it was time to go home. For good.

Part 5 –>

Our Story: Part 1

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-Sean and Annette Hughes are the founders of Care For Us, a non-profit organization dedicated to helping special needs parents be the best they can be for their kids. This is Part-1 of a series chronicling their story.

Her Story

Most of 2008 was just a blur. By the fall, my son Aidan was 21 months old, his older brother Bennett had just turned three and I was just ending my first trimester, pregnant, with our third. I was exhausted.

My favorite time of the day was nap time. I woke up every morning thinking, just make it to nap time. Around then, I started to notice changes in Aidan. The first was that he wouldn’t sleep.  He had been an easy sleeper up until then but something changed rapidly. It wasn’t that he didn’t want to sleep. It seemed like he couldn’t. He would stare at me as if trying to tell me something was wrong. His eyes said, I’m so tired momma but I can’t sleep. It broke my heart. I also noticed he was starting to grind his teeth. His acquired language was starting to slip and he had taken to grabbing my hand and pulling me or pointing to the things he wanted. He started calling his brother by his own name instead of the precious Bee Beet he had been calling him for months. He would only occasionally come when I called his name. I was starting to get concerned. But I was also exhausted.

I was on my third pregnancy in four years. We had moved cross country twice. I had recently lost my mother-in-law to ALS and my husband had been recalled into active duty in the Navy. We also found out he would be deploying to Iraq soon after the baby was born. It was a stressful time to say the least. So when the fears that something was wrong with my sweet boy would surface, I would quickly chalk them up to exhaustion or paranoia.

The spring of 2009 brought our third son. Did I mention I was tired? Aidan’s symptoms had become more pervasive. On Easter Sunday my sister asked me, with some concern, when Aidan had started walking on his toes. It had been about a month. By then his jaw clenching and other sensory issues seemed to be getting worse. Then I told my sister and my mom that I thought he was autistic. My mom looked at me like I was crazy. She told me, “don’t even say that”. I thought to myself, why because saying it will mean it is true? It was the first time I said the words out loud to anyone except my husband. Aidan was now 26 months old and I had silently known for months that there was something terribly wrong with him.

I kept checking the autism websites and watching the checklist of symptoms grow and grow. My husband would tell me I was crazy. He would go sit with Aidan and play with him. I would watch him engage with him. They would sit and sing and talk and play and then I would tell myself I really was crazy. But I knew. His speech growth was at a complete stand still. He would open his mouth to say words he used to say and he would look lost. It was like he was a stroke victim. The words just would not come. The darling little “excuse me” he used to say when leaving the table was now “snee snee” and bee beet, Aidan’s word for Bennett, was no longer being said at all. In desperation I would tell him a million times a day I love you, just to hear him say the one phrase he seemed to be able to still manage with ease. He looked lost and confused. He looked scared and there was little I could do to help him make sense of his world.

In the late summer of 2009 my husband left for a six-month deployment to Iraq. I was exhausted and terrified that I would not be able to handle my new reality. I was feeling so guilty that I had still not made the time to get Aidan properly diagnosed. Five precious months had gone by since I first said the words autism out loud. Five months of watching him regress daily. Five months of arguing with my husband that something was wrong. Five months of no early intervention. Those five months are still a source of great guilt for me. I will never get them back.

His Story

Even now, seven years later, I remember the overwhelming feeling of accomplishment I had on the way home from the hospital with my third boy Sean Ryan-called Ryan. We had been pretty busy. He was our third in a little over three years. All three pregnancies had gone pretty smoothly. Annette was a champ through it all. As I drove the minivan out of the parking garage at the Balboa Naval Hospital, I took inventory of it all. We had three healthy boys, a roof over our head and I had a job that provided for us. We’d been through some really rough times, but most of that was behind us now. We’d made it. My family of five was ready to thrive.

It wasn’t easy to get there though. Five years earlier, I had transitioned out of the Navy after back to back deployments in Operation Enduring Freedom. I had a really hard time with the change. My mother had been diagnosed with ALS so we moved back to the east coast to care for her. She died a few months after we got there so we moved back to California less than 18 months after we left. I struggled to transition into a new career when we returned. I was horribly unhappy in my work. Whatever I did felt petty compared to the life in service in a time of war. I was detached. I had been in the Navy my entire adult life. Now I was lost.

With our first two kids, I had a really hard time adapting to parenthood. I had no patience. I was under so much stress trying to balance starting a new career and trying to keep my extended family together while my mom withered away. It felt like I was angry all the time. Bennett, my oldest was a mess. He wasn’t hitting any of his milestones and he was almost impossible to handle. It felt like all I did was yell at him. But then, not too long after Aidan, our second was born, he started to come around. He started talking and then he didn’t shut up.

I have to admit, when I got called back into the Navy just before Aidan’s first birthday, I was relieved. The boys were doing great, work was going to be stable again and things all felt like they were starting to come together. When we found out we were pregnant with Ryan, even though we didn’t plan it, I was excited. So when the pregnancy went without a hitch and he was a healthy fat blonde baby, all seemed right with the world. Which brought me to that memorable minivan ride as a first time family of five.

I found out shortly after that I was going to have to deploy to Iraq that summer. I knew I would eventually have to go and that it would be tough for Annette with a four-year old, a two-year old and a six-month old, but I also knew it was time for me to get back into the fight. I hadn’t felt whole for a long time. I was back where I belonged. And I was ready to get through another tough trip out to the sand box.

Before I left, Annette told me that she was starting to worry about Aidan. He wasn’t really talking any more than he had been for a few months. I noticed that he stopped running over to me to greet me at the door when I got home from work. She was worried something was wrong. But she was always worried something was wrong. She spent years being worried about Bennett, and he was turning out fine. It always bugged me how much she seemed to blow that kind of stuff out of proportion. Every headache was a sinus infection. Every bruise was a broken bone. And now around every corner, our kids were messed up in some way. Things were getting better and we just needed to get used to things being ok again.

Leaving them on the tarmac in San Diego to head off to Iraq was one of the hardest things I’d ever done. It broke my heart. I’d never deployedscreen-shot-2016-09-27-at-9-11-54-pm with kids. And I didn’t know how to shut off the sadness. All I could do was go numb. My friend Dan, who had left on the first flight a few days earlier had gotten his legs blown off that morning. They let us know in the ready-room for the flight. I couldn’t tell Annette. It just would have worried her. The last thing I remember was that Aidan kept trying to run away from us, out to the flight line where the planes were landing. He wouldn’t stop until we closed the door to the plane and rolled off. It was a tough day.

Part 2–>