Part two of our special series on parenting a child with behavioral needs

By Jami Ingledue

I feel like I’m drowning in the ocean – like I’m unable to catch a break or catch my breath. Like even though the waves are calm right this second I can’t relax because any second now -whether I relax my vigilance or not – a new wave will crash over me and pull me under – Jennifer, mother of 10-year-old with autism and anxiety

Parenting is demanding and overwhelming under the best of circumstances. But parenting a child who has behavioral health needs such as Autism, ADHD, depression, anxiety, OCD, feels like you are drowning, all of the time, relentlessly.

We are hyper-aware, constantly on edge, waiting for the next crisis.

This is perhaps the biggest weight that threatens to pull us under. We must be on the lookout for the next trigger, the next possibly explosive situation, the next anxiety attack, the next unexpected change in schedule that will derail everything. Will I get a text from my daughter today, having another panic attack in the bathroom? Will I get a call from the school today, telling me my autistic child has run away again, or destroyed something? Will I have to start monitoring every pill again to make sure he’s taken his meds, every bite of food to make sure he’s eating?

We are constantly engaged in an inner war: our maternal love and instinct versus our own self-preservation.

Every parent negotiates this to some extent, but for so many parents of kids with behavioral health needs, we are pushed to the absolute limit, over and over again.

One reason for that is because for so many of these kids, we are their emotional whipping boys. They often fight so hard to hold it together at school all day; when they get home with us, where they feel safe, they completely lose it. It’s a terrible thing to love your child and look forward to seeing them, but also dread what hell the evening will bring.

But when they lash out and act horribly, when they are the most unloveable, that’s when they need love the most. So we let them hurt us. Again and again we come back and say, hurt me again. I can take it. You can’t carry these emotions right now, so I have to carry them for you. And even though I might be silently howling with rage and hurt and weariness, my god the weariness—I have to take my own emotions and push them to the side, shut the door on them for a while. I have to take myself out of the equation, so that I can focus on what my child needs at this moment, what will make her feel safe and loved and bring her back from the brink.

Until we can’t take it anymore. Until we shut down completely. I have spent entire days where I could not speak or make eye contact with anyone. I was completely closed up, shut down. Like a clam who closes for self-protection. Sometimes we have to take this time for ourselves so that we can recover. We are constantly managing the balance between giving our kids what they need and keeping ourselves from going under completely.

We don’t have the luxury of staying angry. We don’t have the luxury of hating the one who is breaking our heart. After all, our kids ARE our own hearts, out walking around in the world.

We are exhausted from always giving everything we have, keeping nothing for ourselves or our spouse. So just when we need support and connection the most, we are withdrawing and pulling away, because we are so weary and have nothing left for spouses and friends.

We are so tired of being the strong one. Being the one that fixes everything. Being the one that has to take care of everything, solve everything, figure everything out. We need someone to fix us once in a while, to nurture us.

We feel so, so alone. Other parents can’t really understand ASD meltdowns or suicidal ideation or bipolar phases. It’s hard to hear about other kids’ accomplishments: the honor roll, sports achievements. We’re just happy our kids have stopped cutting, or can now take a shower or even use the bathroom on their own.

We feel like we’re failing all of the time. We’re failing our special needs kid because he’s not getting better, we’re failing our other kids because we don’t have the energy to give them what they deserve. We’re failing our spouses because there is nothing left for them. We’re failing ourselves because all the hopes and dreams we had for our own lives are left far, far behind. We are just trying to survive. Every day. And being in survival mode is no way to live.

We grieve the kids we thought we’d have, the life we thought we’d have. We fantasize about a different life, about running away, about having nice “normal” children or no children at all, and we feel guilty for it. For many of us, it will never end. They will always need support, even after we’re gone, and this thought keeps us up at night.

Parenting a child with behavioral health needs has been the hardest thing I’ve ever done, but it’s also made me a better person in every way. It has broken my heart open so that I feel only love and compassion for kids and parents I see struggling, never judgement. I have become more evolved, as a parent and a human, so I can take myself out of a situation and see it clearly: what emotional need does this child have in this moment that is not being met?

But being stronger swimmers won’t keep us from being pulled under. If you see a parent struggling just let them know they’re seen. Offer them some sorely-needed nurturing. Invite them for lunch or a drink. Let them feel safe enough so that they don’t have to pretend everything’s fine. Don’t exclude them because they have the “weird” kid.

To parents who are drowning: I see you. I hear you. You are not alone. Let’s find each other and we’ll stay above water together.

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If you are a parent in need of support, come join our “Behind Domestic Lines” Facebook group, a safe community for parents to share their experiences and support each other.

 Also see Part One of the series: ‘What I Want Parents of Normal Kids to Know’