I appreciate it when people recognize how much work it takes for me to care for son. Ronan is 13 years old and has non-verbal regressive autism. He needs 24/7 care. From diapering to redirecting to reducing behaviors to managing his medical issues, including seizures, it’s more than a full-time job for me. Some friends see that but they don’t always know how to pitch in. That’s okay. Some days it’s daunting even for me to think about everything that needs to be done let alone plan and implement and hope that everything goes smoothly! There’s more than enough to do to keep Ronan happy, healthy, and safe though, so when someone expresses that they want to help my family, I humbly and gladly take it.
When I’m asked, “Cathy, what can I do to help your family?” I share a few ideas from this list. Posted two years ago, there are tons of ideas to choose: 30 Days of Autism Action Ideas Even though there are plenty of ideas on that list, I thought I’d expand on a few of them this year:
1 – I think that many parents appreciate being able to take a break every now and then, but parents of a child with autism may not be able to. If their child wanders or elopes, that parent cannot take their eyes off their child. If their child is non-verbal or non-communicative, the parent may not want to leave their child in the care of someone else, especially if it’s a new person. If a parent is able to take a break, it may be because the person they’ve entrusted their child to is a reliable family, friend, or a hired caregiver. If you’d like to offer to be that family’s reliable help, learn what needs to be done and offer to be that person. Even if it’s coming over a few minutes at a time, learn the routine. Learn the stims. Learn the triggers. Learn the signs if the child uses sign language or become familiar with the communication device if they use that. Learn how to help, and do just that. If it’s too much to handle, because some of the care the child requires just might be, don’t give up on helping. Find another way to be there for the family.
2 – I have very kind-hearted friends who tell me after they’ve made a donation to an autism organization and that they’ve donated it in Ronan’s name. Donations are great! But some organizations don’t give back to individuals in need. Learning that the money won’t go back into the community or to a family affected by autism can be disappointing. So, before you give away your hard-earned money, ask the family where they think a donation will be best served and consider following the family’s request.
3 – If you do make a donation, and if it was to a local autism or special needs support group, ask about volunteer opportunities. Do they have any classes or seminars where you can learn more about autism? If they train volunteers to be able to work with someone with autism, get some training. If they need sponsor to help with events, chip in! Give your time, provide supplies, or share a small donation. Many support groups are run by parents, parents of children with autism. To have outside help, even if it’s just a little bit of help every now and then, can go a long way.
4 – Find out what books, movies and magazines an autism family supports and offer to send a copy of that book or that movie to the public library, to a nearby university library, to your church library, or to a local autism classroom teacher. Offer to supply a year’s subscription of that magazine that the family enjoys. If they already have a subscription, offer it to another family who may benefit.
5 – Reading books and getting newsletters from local groups can be a great way to get a peek in at what life can be like for a family caring for someone on the autism spectrum. If after you’ve become more familiar with the diagnosis and feel called to act further, why not get political? When autism services, education, or funding is on the agenda, attend your school board meeting. Find out what the parents are saying, listen to what the teachers are requesting, and take note of which board members listen and which ones do not. Support the members who believe in the kids and who are fighting for their rights. Call out the members who are not—politely of course. Become familiar with the local politics and keep going. Join the families at the state house when they rally together. Make contact with the federal representatives involved with autism policy. With the autism rate as high as it is, which stands at 1 in 68 according to the CDC, autism policy is being discussed not just in your own community but across the entire nation as well.
6 – If you see someone’s child having a meltdown in public, before making a comment and before thinking about stepping in, gently ask if the parent/caregiver needs assistance. I have needed help from complete strangers in the past when Ronan had a meltdown. It was one of the most humbling experiences to have to ask for help. It may be humbling, but without the stranger’s help, I wouldn’t have gotten Ronan through the door that he had earlier refused to go through. As Angie suggested in a comment on the original post, instead of giving them a weird look, give them an empathetic smile instead.....you have NO IDEA how those positive little things help brighten the situation, and in turn how much worse they make the situation if it's a negative response/comment/etc....
Those are just a few more suggestions on how to help a family affected by autism. Keep in mind that those suggestions don’t have to be done only during the month of April. Your contribution, be it time, providing adaptive equipment or making a small donation to a support group or to a family in need, can be shared year round. So if someone says yes, please help! Ask them what they need. Then give. Give what you can. Do what you can. Do so with hope, with happiness, and always with love. Our children do so well when they are surrounded by love.
Cathy Jameson is a Contributing Editor for Age of Autism.