Parents of developmentally disabled children suffer from a very difficult form of depression called chronic grief. The loss we have suffered cannot be relieved by the normal grieving process.
Why? Because it is ongoing; there is no closure. We may feel good most days, but we suffer constant triggers - IEP meetings that detail our child's limitations, seizure activity, judgment in public, isolation from family and friends, social media posts featuring children achieving milestones - and with each trigger, our loss is experienced over and over again as if it's new.
According to psychiatrists who specialize in chronic grief, the root cause is the gap between our reality and the expectations we had for our children and our experience as parents. We imagined something very different from what we've received. Our reality seems cruel and unfair for our children and for us.
This loss is even harder to accept because of the stigmas surrounding our ability to allow ourselves to feel the loss we've suffered as parents. We're told we must be grateful for what we have, so to grieve our loss feels selfish.
And then there's the guilt. Most parents of autistic children feel like there's something they did to cause their child's autism. Some parents are very public about it - vaccines that changed their child overnight, for example. Others keep their guilt secretive. Maybe you worry it was caused by fertility treatments, or you took a risky pharmaceutical drug while pregnant, or you knew autism ran in your family but chose to have kids anyway. Maybe it's even something highly unlikely to have caused autism, but it haunts you anyway, like that coffee you drank or sushi you ate while pregnant, or all those drugs you did in college. And even though literally a million other parents did exactly what you did and their kids don't have autism, still ... the guilt remains. And it's crushing.
It's important to acknowledge that you're experiencing this grief. If you aren't aware of it, you could suffer emotional pain the rest of your life. It could cause physical illnesses, make you more susceptible to disease and maybe even cause premature death. Ironically, as a lifelong caregiver, that's the last thing you want.
The experts say time will not heal this broken heart. Action is key.
What are some actions you can take? Here are some the experts recommend.
1. Change your habits. Stop thinking and talking about life before your child's regression. Stop focusing on your child's limitations and reduce the amount of time you spend complaining about it to others, including posts on social media.
It's important that you don't shame yourself for this behavior. According to Psychology Today, the intense yearning of chronic grievers brings them as much pleasure and reward as it does pain. MRI scans of chronic grievers show thinking about your loss activates the nucleus accumbens, the brain center responsible for pleasure, rewards, and addiction. Basically, you've been self-medicating your pain. However, like other self-medication substances and behaviors, your short-term gain is making things worse in the long run.
Instead, do these two things. First, reach out to other parents and experts to find ways to eliminate or reduce your child's problem behaviors. Second, focus on your child's strengths and nurture them. If you need help changing your thought patterns, seek professional help.
2. Redefine normal. Your child may never have a career, get married or have a family. But that doesn't mean they can't enjoy a happy, fulfilled life. Look around you. How many people do you know who have all of these things and are absolutely miserable? A so-called normal life doesn't guarantee happiness. It's not even the source of happiness. Happiness comes from within, doing things you enjoy and being at peace with who you are. Instead of grieving the loss of normal milestones, focus on helping your child pursue what makes them happy and develop their skills.
You also need to focus on your own acceptance of your child exactly the way they are. You can't expect others to accept your child as "different, not less" if you are constantly comparing them to others.
Finally, you may need to take an emotional deep dive into your own self-worth. Your child's developmental disability may be triggering traumas suffered in childhood that make you feel like you're a failure, or not good enough. These traumas may make you feel like you deserve the shame of having a child who isn't normal. Until you address these deep seated traumas, it will be difficult to accept your child's diagnosis. If you're having trouble doing this, seek professional help.
3. Focus on yourself. Who were you before your child regressed? What did you sacrifice to take on your caregiver role? If you've placed yourself into the role of a martyr, you need to change it. Sacrificing yourself hurts you and your child. Our kids aren't stupid - in fact, they're very perceptive, many of them more perceptive than neurotypicals. They will pick up on your resentment and it will damage them emotionally.
The answer is to find ways to go back to doing what you love. There are support systems you can put into place. Find other parents of autistic children who do the things you used to love to do, like compete in 10K races, have thriving careers or travel. Ask them how they did it. They will gladly share their secret, because at some point, they were exactly where you are right now.
4. Expand your spirituality. Autism is an earthly problem. Spirituality expands your life beyond this dimension and provides relief to your pain. It doesn't matter how you do it - whether you prefer organized religion, spending time in nature, meditating ... heck, try an ayahuasca healing ceremony if that's your thing. It doesn't matter. The point is that most people find relief from grief by tapping into a higher power. Find your path to that higher power and make time for it.
Heather Anderson is a blissfully happy autism mom and lover of life in Southern California who is on a mission to help autism parents rediscover their happy place.
Please join me on this beautiful autism journey. The Autism Oasis is a fun, supportive and educational community where your personal development is just as important as your children's. You are more than just a caregiver!