Common Experiences of Parents with Neurodivergent Kids
This article is not meant to place blame on the child or on the parents but to bring awareness to how hard it can be for a parent of a neurodivergent child, as well as the child. Living in a neurotypical world is really hard on our kids and it is important to recognize that while it is harder on the child it is also hard on the parent. We want what is best for our children and we want them to have a life that they love. I want to be clear that the struggles that these children are dealing with have more to do with the neurotypical world being hard to navigate for them and not that it is necessarily the symptoms of their neurodivergence causing these issues. This blog is meant to bring awareness to the need for parents to take care of themselves so that they can be as loving and accepting of their children for who they are and fight for their child in the system wherever it is needed. If the parent isn’t well the kid won’t be well either.
1. Grief and Denial About the Diagnosis
When we think about grief we think about feeling sad that things are bad or that someone is dead. In reality, we also grieve things being different than we expected them to be or even just change no matter how happy we are about the change. For example, someone who has a c-section may have sadness about not having been able to have had a natural birth this doesn’t mean that the person is sad that their child was born just that the birth happened differently than they expected and they have feelings around that. Often when a parent is given a diagnosis or they even start to recognize that their child is neurodivergent there is some sadness there. This does not mean that they resent or dislike their child just that they expected it to be different. Often once the parent gets to the other side of the initial grief they are able to accept their child and their differences. This does not mean that the parent might not be faced with how these differences impact the way the world interacts with their child repeatedly as their child gets older but it still does not mean that the parent does not love their child for who they are. It doesn’t mean that they even wish their child was someone else.
Denial can also be a part of this experience. When we look around us the world is not created for a child with a neurodivergent brain. Often accepting that their child is neurodivergent means accepting that things might be harder for their child in the long run. This can be a hard thing to face because as parents we do want our children to be happy and in our brains, we often equate a happy life with an easy life. Even though this is not necessarily true. Allowing yourself as a parent to really look at these feelings will help you get back into a place where you can really be more present and aware of who your child is.
Often a hard part about this can be that both caregivers may be in different places. One parent may be ready to embrace their child’s neurodivergence and figure out how to live their lives in a better way. But the other parent may not be ready for that and may not be willing to accept that their child thinks differently. This can put the parents at odds with each other about how to parent their child.
2. Facing Their Own Possible Neurodivergence
Often when your child is newly diagnosed sometimes, we start to look at their behaviors and the things that were included in the diagnosis and we see some similarities in our child and ourselves. Or when we start learning about our child’s diagnosis we start seeing ourselves in other neurodivergent diagnoses. This can be very overwhelming because at times it puts certain parts of our lives into perspective and makes us wonder what things could have been like if we had been recognized earlier. Or what it would have been like if you had realized that you think differently than other people. Often the hardest part of recognizing your own neurodivergence is realizing how much you have hidden in order to get by. There may be some sadness or anger aimed at a world that you’ve never felt you fit into until they had more information about themselves.
3. Never Feeling Good Enough
Parents face a lot of judgment in our culture and when your child doesn’t act the way that others expect them to or when they have invisible struggles that other people don’t understand the judgment can be even more extreme. When your child doesn’t act the way that everyone else expects you get a judgment from strangers in public and the neighbors. Just generally from strangers around you who don’t know what your child is going through.
You also get a judgment from medical professionals and even professionals who are supposed to work with disabilities. One very typical comment parents hear is that the child is just spoiled and needs better boundaries set. This of course is blaming the parent for something that the child can’t help and that boundaries are not going to help with. So the parent hears judgments and comments from everyone else around them but they also have a lot of internal judgment. Often even If you know that your child thinks and acts differently it’s hard not to blame what’s going on with your child on you. Often as a parent, you compare yourself to what you expected to be like as a parent, and when your child is different you parent differently. Also, the neurodivergent community has a lot of options and a lot of people who have strong opinions. This leads a parent to a place where they are often questioning themselves.
4. Constant and Consistent Feeling of Being Overwhelmed, in a Practical Sense
Often having a neurodivergent child comes with a lot of support for the child but utilizing that support can be a lot on the parent. Often there are multiple appointments a week that puts a lot of pressure on the family. Yes often those appointments help the child but it can be a lot to navigate the scheduling pressures of regular appointments and a busy family and schedule. There is also a struggle to maintain basic self-care for the parent and child. Lack of sleep is consistent and there is often worry about whether or not the child is getting enough of the right nutrients. With a lot of kids, there is also a constant worry about safety. Some kids run into the street if they are not kept close by or maybe self-injurious and this can put a lot of extra pressure on the parent and the family as a whole. It is normal to feel completely overwhelmed and to have multiple health issues come up because of this chronic stress.
5. Lack of True Support
We talk a lot about how it takes a village to raise a child and this is definitely true. Often extra support can be really important when you are a parent of a neurodivergent child just so the parent can take a deep breath here and there. Unfortunately, the opposite is what happens. Instead of getting extra support when your child is struggling often, your support network disappears. Friends who may have been around during the pregnancy may not know how to help a parent whose child isn’t sleeping or whose child seems to be struggling in this world so much and because of that may just slowly disappear. Or they may not understand what it might be like for a parent who is only getting two hours of sleep and so they may get their feelings hurt when their friend doesn’t call back. When you are in survival mode all the time it can be hard to maintain typical friendships. The people who understand what you are going through are just as busy and stressed as you are so it can be hard to really find the time to connect.
Other families can rely on family, but when your child is neurodivergent this may not be appropriate or available. Your child might struggle too much for a grandparent to watch or the grandparent may not understand what is going on for the child. They may suggest things like spanking or not feeding the child if they don’t eat what is provided. Both of these situations can result in the parent feeling even more inadequate and alone.
This situation has been exacerbated since the pandemic. There used to be skilled help that was hard to find but you could get eventually but these people have disappeared or found other income. In the past reaching out for this type of help was really hard in the first place because our kids can be so vulnerable to abuse from others.
6. Not Feeling Heard
The last common experience that a parent of a neurodivergent child might experience is not feeling heard. This happens with professionals and friends and family. Often it starts in early infancy, the parent will bring up concerns with their child and friends and doctors will often brush it off. This continues to happen as the child gets older. Where even though there is a known connection between sleep and neurodivergence often doctors don’t seem to understand when they hear that a child only sleeps 2 hours a night. It feels very gaslit to tell a doctor that your child seems inconsolable for half the night and then have them tell you to do your best. Often there is no recognition that this is a hard experience to watch your child suffer at times and not know what to do or how to help.
If you have a child who is neurodivergent, I want you to know that you are seen, that there are people out there that know that this is a hard experience. But that I know that you love your child more than anything in the world and that you do everything you can to help them have a happy life. If you are reading this to learn about a friend or family member's experience I hope that this helped you to know ways that you can be a support to them and how you can be present in their lives so that everyone can be happier and healthier.
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