Your Suggestions Requested: How to Support a Family That's Coping with Autism?
Monday June 30, 2008
Yesterday, I received this email from a reader:
I was hoping you could help me....We have a couple that we have grown extremely close to over the past few years. They have 2 little girls, age 5 and 7, with autism. My husband and I yearn to support them and I am having trouble finding information on how to do so (we do not want to "pity" them but encourage them). We try and praise them and let them know how much we respect how strong they are and want to help them. They are definately still grieving, as you put it, and we want to help and support them as best we can. I am just having trouble finding resourcess on how to best do that. Any help would be appreciated.My three best suggestions were pretty simple:
- Plenty of positive reinforcement is great: if you see a positive change in a child, be sure to let her parents know right away!
- A non-judgemental listening ear is critical. In fact, by providing another place to vent, describe, discuss and debrief, you may be the one who helps to save a marriage!
- Babysitting is probably the best gift you can give a couple with children on the autism spectrum. Time away and time together for a couple with two autistic children is absolutely precious.
Comments
Ask the parents themselves,
What can I/we do that would be helpful to you?
Every family has different needs and every helper has different skills. If you love to bake/cook, ask if you can drop off dinner one day a week and which day of the week would be the most needed. If you are great at organizing spaces, offer to help redo a room - maybe their office space needs your help. A neat clutter-less environment helps keep stress down and mental focus high for both parents and kids.
Some children may love to swim in their pool so you can be outside watching their child swim while the parent indoors does housework,paperwork,takes a much needed nap, etc. Or if there’s not a pool, maybe play outside w/the child - kicking a soccer ball, running through sprinklers, climbing a tree, doing messy artwork that would be too messy indoors - for a couple hours while the parent gets things done.
If the parent knows you well and you think you can handle the child, plan a trip w/ them to the beach or local waterpark, bowling alley, playground or arcade for an afternoon.
Many kids with disabilities, just like typical kids, will behave better without mom around. You may be surprised that they are easier to deal with than you imagined. And tell mom everything that happens when you return the child(ren) because mom wants to know exactly what you’ve observed without her there - what manners and abilities her child is not displaying when mom is around. When mom hears what her child is capable of, she knows better what she can expect from that child and how far she can prompt him/her.
new parents who are still in the grieving stage often only focus on all the ‘cants’ within autism and being their parents. sometimes we need to be reminded of all the ‘cans’ that are around us and within our children. some times not talking about autism is ok too
they’re still kids never the less. bring up some great things you see in the children.
I wouldn’t so much talk about how strong they are, for they may feel it’s your expectation of them and they may be less likely to ask for help. let them know they are strong, but it’s ok not to be strong every single minute of the day, and you’re there to help. we all know we’re strong, maybe stronger than we thought but I know many times I don’t wanna have to be all the time and it’s one thing I never like to hear. you’d be that strong too, if it were you in my place
so throw in there a good cry is ok, and weaker days are ok too.
baby sitting is a good one, even if it’s just one child. it is true even our children do not react the same with other people and my son is also one of them. even if you were there for the mom to take a hot soaking bath without having to worry about the kids would be a great thing.
It’s sad they are still grieving
Ask their needs
1. Praise them not on strength but on just what good parents they are. I love that
2. If you can handle it offer to babysit one Saturday of every month for date night
3. Christmas gift card to toys are us or a teachers in a basket with some sensory toys
Re did
1. Ask their needs
2. Praise them not on strength but on just what good parents they are. I love that
3. If you can handle it offer to babysit one Saturday of every month for date night if that’s imposable offer to bring dinner and a movie
4. Christmas gift card to toys are us or a teachers supply store in a basket with some sensory toys.
5. If they do floortime or sensory offer to learn it. Be careful with sensory do not use any weighted items heavier than five/ten pounds.
I also have two children who have autism. I started a blog to share information, encourage support and the like for people who are facing the very same struggles. Feel free to email me and view my blog. http://fearlessfemales.blogspot.com/
Thanks. Holly
Hi,
one of the best approaches is to have knowledge of your subject, then you can teach others what you know and how to deal with it (in addition to building your own confidence regarding how to deal with it). If you visit the following site you will find fact sheets on just about every ‘condition’ you are likely to come across -
http://www.oaasis.co.uk/
Armed with such knowledge, you can then (with confidence) deal with it yourself and help others to cope with what they have to deal with. I learned a long time ago that my child is not a problem, but has a problem. If everyone accepted the same life would be so much easier to cope with for everyone who has a child with special needs.
Good luck and congratulations for seeking advice.
Cheers
Tezza
I have two boys, my youngest is on the Autism Spectrum. We have a tremendously supportive family and close circle of friends. Like so many of the suggestions given, our support circle has gone out of their way to be encouraging with their words and actions. They have not only recognized how tough things can be but encouraged me for decisions and actions we have taken. They listened while we processed and listened while we continue on this journey.
Helping out in tangible ways like meals & babysitting is awesome. They have also learned about my son & how best to love and encourage him. They engage him in activities and conversations that are of interest to him. They ask us how to best support him. They have supported our decision to engage our son in a special diet - they ask what foods to have for him, so he feels included & like one of the gang.
They look for articles & tv shows that talk about autism. Sometimes they considerately ask if we are interested in the informaiton. Sometimes they tell us what they learned.
Not to be flippant, but tell them to snap out of it.
The autistics they are living with will have to put up with the family and the rest of the world all of their lives, which is no easy chore considering how crazy the world is.
All the family has to put up with is two autistics.
While it is natural for the family to “grieve” over the fact that they have two autistic kids, it looks petty and silly from the standpoint of autistics who will have to “grieve” over the fact that the majority of the entire world will not be autistic.
My best advice as a mother of a child on the spectrum is for those not affected by autism to ask questions. I’d rather our close friends ask questions on autism than act fearful of my son’s behaviors or constant questions and curiosity.
The thing I needed the most at least at first was being able to talk about my son’s form of autism. I need someone to share joys, hardshios and new skills that he is learning. I was always afraid I’d talk about him too much and run people off. Reassure them that you want to be there to listen to all they have to say and that you won’t get tired of listening to them.
Also, make sure to let them know they are good parents it is easy to feel as if you are doing all the wrong things. My son wasn’t formally diagnosed until he was almost 4 and I felt as though I should have had him diagnosed earlier. My sister was great for letting me know that I was doing a lot more right things than wrong things where my son was concerned.
i have found that doing research on the autism or spectrum will give you a better understanding of what people go thru on a day to day basis! most people say they understand but don’t really have a clue! if it were me, i’d do the research and be willing to talk,because we all need to vent, but no one wants to listen!
What i have noticed over the past seven years is many people shy away from families who are going through this because they are actually afraid to become involved. People frequently do this when they just don’t know what to do or say. It’s sad, but I feel they just think that well, that family is different from us now they will find new friends who are going through the same thing, and somehow that makes their fear and actions justified. That’s what happened with my so called friends. You really find out who your friends are. I have only one true friend who has stood by and actually become like a sister to me. And guess what, she also has an autistic son. Before the boys were born, there was a group of nine of us.
I believe every family with a child diagnosed on the spectrum, to be heroes. It takes certain courage, strength, love and ability. I feel these qualities raise these families a notch above a “typical family”. I am proud to be my child’s parent.
I have three boys of varying ages with an autism spectrum disorder and one with mental retardation due to an early birth. I think the biggest gift to me was finding qualified caregivers who were compassionate and wanted to know what my husband and I needed. Also, because kids on the autism spectrum are also quite variable, get down on their level- get involved with them. If they like checkers, play checkers, if they like Star Wars facts sound interested, if you aren’t sure how to interact with the child/children, ask the parent for suggestions. Sometimes just listening to the parent, and the child are the biggest help of all.