Helping families fight the loneliness of autism
Families living with autism deal with debilitating isolation and loneliness. Do you know one? There are things you can do to help.
Wednesday, September 14, 2011 - 00:29
Raising kids is hard, but raising a child with a disability like autism is even harder.
I know this because I have five children — two of which (my adopted-from-birth twin sons, now age 16) have a diagnosis of autism, fetal alcohol disorder, developmental delays and speech, communication and language disorders.
Soon after the boys began exhibiting autistic behaviors (tantrums, screaming, self-injury) friends began to drop away. Attending church became impossible. People said hurtful things. When people found out the twins were adopted, they asked, "Why don't you give them back?"
Many mothers of kids with autism don't get to be soccer moms, see their child perform in a play, or take them to loud family events. Eventually, they find themselves isolated and alienated, even from family.
Parents living with autism are exhausted. Fielding questions and stares, working through red tape, advocating with the school is hard to do when you've been up all night protecting an autistic child.
Here are 10 ways you can help families living with autism:
1. Don't give advice. If they want it, they'll ask for it.
2. Offer to help with things like laundry and housework. Children with autism require 24/7 supervision and depending on the day, housework sometimes just doesn't get done.
3. Don't judge them or the house they live in. At my house, I can put everything away only to have the boys get into every box, bin and trunk and strew things all over the house. No amount of discipline cures this. It's just a fact of our lives.
4. Cook a meal, mow the lawn — any mundane yet necessary home tasks that may help lighten the load.
5. If you feel you're able, offer to watch the kids so mom and dad can get away even if it's only for an hour.
6. Offer to help the family attend church services. My husband is a minister and while the boys do fine at church now, in the beginning it was very difficult, and we created PALS (People Assisting Little Souls) to help them.
7. Don't leave the children with disabilities out of parties. My boys were never invited to birthday parties when they were small, and it was hurtful. Work with the parent to accommodate the special needs children. They can arrive early or late depending on their need.
8. Offer to help them go to the store. I always took a friend with me. I couldn't have done it any other way.
9. Encourage parents raising autistic kids to ask for help. Nobody is an island. If they don't get relief, they risk burning out and becoming depressed.
10. Meet the family at the park and help them supervise their special needs child or children.
These are only a few ways people can reach out to families living with autism. Do you have any ideas?
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