10 Ways YOU can help a family living with autism
By Lisa Ackerman
(Start today by forwarding this blog with a personal note: “Your family is important to me. How can I help you?”)
Children’s activities sure can keep you on the go! Like other moms, I spend countless hours each week driving my kid back and forth, juggling between my responsibilities and getting him where he needs to go. Every parent I know is committed to making sure their child is participating in activities that will help them grow into a well-rounded adult equipped to live a productive and happy life. Parents will run themselves ragged to help their child succeed in the present and prepare for the future. In that way I am like all those other mothers and fathers.
But there the similarities end. While many of my friends are driving their kids to basketball practice, music lessons, cheer tryouts or science camp, I (and other parents of children with autism) am taking my kid to therapy sessions, follow up doctor’s appointments, medical evaluations, IEP and school district meetings. Very little of this process seems normal and it often feels incredibly isolating.
Typically, when a child “makes” the team or joins a group, they are welcomed into a busy new community. Kids bond and cheer each other on. Parents make new friends, arrange carpools, plan fundraisers and attend games or performances. For many of our kids in the autism world, there are no teammates cheering your kid on at the doctor’s office. No parents sitting by your side in the school office while you fight for your child’s right to educational support.
We all knew having children would be a life changer. Having a child with autism is something altogether different. Families living with autism fight time from sun up to sun down – there is just never enough time. Because of the developmental nature of autism, parents feel a sense of urgency to help our children achieve as many gains as possible to maximize their chances for a healthy future. So we continue to squeeze in more therapies, more interventions, and more evaluations. Like all parents, we fight for time in our daily and weekly schedules. But unlike most parents, we are also fighting against an unrelenting developmental clock.
If you have a friend or family member affected by autism, you often know they are struggling but don’t know how to help. The greatest gift you can give is you. Remind them often: I’m here and I care. Whether the autism diagnosis came yesterday or ten years ago, we need to know we are not alone. Here are some ideas on how you can make a difference for families with special needs children.
1) Pledge to NOT disappear!
Staying friends in the long term is important. Having children on the autism spectrum is lonely and most of us don’t ask for support. Let your friend know it is important to YOU to stay in touch and ask them which way is best. Text? E-mail? Facebook? Phone? Learn the family’s routines to better understand how to help (i.e. Thursday is come home early from school day). Even a simple note in the mailbox can remind a stressed out parent they are loved and not alone.
2) Offer to run errands.
Families living with a child on the spectrum face different challenges than others. “Running into the store” or otherwise changing a child’s routine is far more stressful. Your offer to help is invaluable and helps a child with autism avoid trigger situations.
Errands could include:
• Pick up the special needs child at speech therapy and bring them home.
• Pick up the typical children at school and bring them home.
• Drop by or send a text message: “Need anything from Target?”
• Drop off bills or make a post office run whenever you are heading there.
3) A “honey do” list helper.
We can really be behind on basic household maintenance! If hammers are your thing, offer to help with the basics (fix a window screen, repair a leaky faucet). If your friend’s child is at risk for wandering (a big issue with autism), safety proof doors/windows and install alarms.
Invite and keep inviting the family to social events. Don’t be sad if they have to cancel or have a scheduling conflict – keep inviting them over. Just the invite alone is a lovely way to reach out and remind someone you care.
5) Kid time!
Making friends is easy for many kids but children with autism often struggle. Your children can be great peer models & invaluable play time friends. Adults can help to make this meaningful and purposeful. First, ask if your friend is interested in play dates. It might be just what that parent needs as well! Then prepare your child for the new friendship.
Some important tips:
• Your typical children can provide a beautiful source of caring & friendship. Let them know a special friend needs their help.
• Your child doesn’t need training – being a friend comes naturally to kids. Adults will help with tips (turn-taking games, trampoline jumping, two-player video games).
• Some great books at the library you can read to your child prior to the play date:
~ Andy and his Yellow Frisbee – by Mary Thompson
~ I love my brother!! – By Connor Sullivan
~ Ian’s Walk – by Laurie Lears
~ What’s Wrong with Timmy? – by Maria Shriver <http://www.amazon.com/exec/obidos/search-handle-url/index=books&field-author-exact=Maria%20Shriver&rank=-relevance%2C%2Bavailability%2C-daterank/102-5762772-7729728>
6) The ultimate gift – babysitting:
Finding someone you trust who bonds with your child can be a huge challenge for our families. Babysitting is one of the greatest gifts you can give. Start off by building a relationship with the child in his/her home with the parents present. Slowly increase the amount of time you spend with parents away. Know the child’s likes and dislikes and other special tips. Have parents prepare a visual schedule for when they leave/return so the child knows what to expect. Tag team babysitting is also a great way to stay fresh and be fully engaging. The parents will cherish this gift!
7) Food delivery:
Meal preparation can be a huge challenge as many children living with autism have food allergies. Get a list of their specific allergies and see if there is a restaurant or Whole Foods Market nearby that has specific items the child and their family can eat. A little bit of allergens still hurts – so be diligent and ask. Know the “tough schedule days” and plan meal delivery ahead of time! Be sure to clear allergies and preferences before you purchase a meal.
8) Know a congressional representative?
Our local and federal representatives need to understand how autism affects families. The families themselves are often overwhelmed and unable to contact legislators to explain challenges or how a potential law might impact them. Be their voice!! Discuss upcoming legislation with parents and learn their views. Help organize a letter or call-in campaign to address key issues. Peruse related websites to guide you on autism issues. Ask the family “If you had the ear of a legislator – what would you say?” Encapsulate that information and you will be a hero for the child you love and countless other families facing the same challenges.
9) Fundraise for their “cause”:
Families rely on organizations, like TACA and others that help them on a regular basis. Ask them who they support and join that group. Set a goal, run a race or participate in an activity to raise much-needed funds in honor of the child you love. Display photos, tell the story of the child you know and why you are involved. Share with everyone to help raise funds and spread awareness.
10) Help organize:
Filing and organizing is at the bottom of the list for most families living with autism. Give us our kitchen table back and offer to copy, organize and file important records for future appointments.
An important point to friends and family members wanting to help:
Families with autism hear conflicting information from all sides on a daily basis. Forward articles and share current news but hold back your opinions and advice. Send a link with a nice note: “I thought this might be of interest to you. I think about your son/daughter often and hope you are having a great week.”
A special note to parents loving a child with autism:
It is ok to ask for help. Helping is what community does for each other. Send your family and friends this article with a personal note: “I could really use your help with #2 and #9 (or whatever numbers you are struggling with).” Feel free to add something that this list didn’t cover. The greatest gift people can give is to love and care for one another. Let someone do this for you. Accept it and remember, when you have more time you will pay it forward to another family in need.
In the spirit of autism awareness month, pledge to make a difference! Even if it is once a month – you can help affect change in a positive way for families loving a child with autism!