It’s easy to feel alone.
Some parents will never understand why you can’t attend a birthday party. Family members won’t understand why Christmas, Thanksgiving, and Halloween can cause you dread weeks before the holiday even approaches. Play dates will sometimes have to be canceled because when you made the date; your child was in tiptop shape, but this morning…not so much.
People in the store may just think you’re a bad parent when your child is in the shopping cart screaming incoherently about something that even you don’t understand at that moment.
You have to have the blue cup for the morning juice, and the red is for dinner only. The green spoon is for cereal, the purple is for oatmeal, and the orange is for everything else. You can’t have more than three meatballs in their spaghetti, all the doors have to be opened and closed three times (or five, but not four), and sometimes shoes are just not going to happen. You will get stared at, even by those who love you, as they watch these rituals take place.
Having a child with special needs can make you feel very alone as a parent. As much as we want the best for our children, it’s very easy to overlook the isolation we can feel as caregivers.
Self-care is critical, and it’s something that has taken me a long time (almost five years) to accept as not being selfish. But when I’m counting cups, and steps, and planning outings in stages of “what-will-cause-a-breakdown-ness”; if I’m not at my best, I will forget something. I will lose my temper. I will not have the patience my child needs.
Self-care is pretty easy to break down in three simple things that will help ease the loneliness.
1. Ask for help
It’s easy to feel alone and like no one gets your struggles. There very well may not be anyone in your immediate circle that does. That doesn’t mean that they won’t help. If you call your parents/grandparents/aunts/friends/cousins and say you need an hour or two of “me” time, I’d be hard-pressed to say you couldn’t find someone. Leaving a special needs child with family can be taxing, however, and may be counterproductive if you’re going to worry the whole time. Check care.com for nannies and sitters who specialize in special needs if you aren’t 100% sure you have someone close to you who could handle it. Or, try a late night “me time.” After your child is in bed, ask someone to come sit with them and go to a movie, get an appetizer, or just drive around and sing to yourself for an hour. Whatever works.
2. Join groups
Thanks to the internet, there are tons of online communities for everything from cat lovers, farmers dating, and parenting children with special needs. They have helped me a lot in times of sheer “how will I make it another day like this.” If you’re fortunate to live in an area that has in-person groups, give it a try! They’re not for everyone but you may get a sense of self after hearing others struggles and solutions.
3. It’s okay to mourn
One of the first things a family therapist ever told me was that it was okay to be sad about the family I won’t have. It’s okay to feel sad that we can’t celebrate the same as other families, that we can’t have family nights at Denny’s, that we can’t just pack up on Sunday morning and go to the park. It’s okay to mourn those things. Getting through that will help you appreciate what you do have. You have a family. You have children who you love and they have skills and talents that others don’t. Be grateful for those things.
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