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Article of Interest - Autism

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Bridges4Kids LogoFriends & Family Speech: A Mom's Perspective On Autism
Penny Ray, Mother of a Child with Autism, April 2005
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Hi. I’m Penny Ray, and I am my kids’ mom to 7 year old Mikaela, and 5 year old twins, Alex and Alyssa. Alyssa was diagnosed with autism almost four years ago.

As I reflect over the past four years, I’m struck by how much families like mine need families like yours. If we don’t have your help, your support, the costs grow in many ways.

You see, the experts agree: The more involved the parents, the better the outcome for the child. And the experts agree that 30 or more hours a week is better. However, no one is supporting the families to make this a reality for the children.

WE have no family within 600 miles, and we have three children who need our attention. I’m not a native to Michigan, and didn’t have a network of support before autism. Neighbors were casual friends, and having the glaring problems that come with an autistic child made us very different as a family. Activities that were normal to them were impossible for us. And almost no one saw how much of a burden we were carrying. We were isolated, sleep deprived, and stressed.

One thing that people often don’t realize is how we can’t let the child with autism out of our sight, because of safety issues. In the blink of an eye, a child can poop and paint an entire room with feces, or open a door with multiple locks and be halfway down the block. Doing laundry or the dishes is impossible when you can’t keep the child in one place more than a few seconds. Gardening or yard work is also impossible when you can’t turn your back on your child for even the briefest of moments.

It’s like having a newborn and an 18 month old and a 5 year old all in one—and with no OFF switch. We are years past the newborn stage, yet we never know when we’re going to get six hours of sleep in one stretch. I know we’re one of many families who have children who are known to get up in the middle of the night and stay up for several hours. We can’t leave them alone, awake in the night. We have to watch our kids constantly and try to stay three steps ahead of them, and yet they can hurdle baby gates, open doors and run, pull fire alarms, and climb on top of vans quicker than we can turn around.

Special diets mean cooking from scratch, and chauffeuring children to therapy takes time away from siblings and routine chores, too.

Research takes a lot of time. We parents must keep up with the latest information and research on a wide variety of autism-related topics, including education, sensory integration, diet, biomedical, social skills as they apply to autism. Conferences provide wonderful hands-on information, but they are expensive, sometimes require overnight stays, airfare, rental car etc and require that I find some sort of child care.

My house is a mess, I’m always behind on laundry, and I never seem to have enough time. A lot of parents wonder why I’m not working on the house when the children are in bed. We often go to sleep when the children do (because we aren’t getting enough sleep through the night), and chores pile up as a result. I often feel quite overwhelmed by my circumstances, and as I talk to other parents of children with autism, I realize that this feeling common.

And you’re wondering, what does she do when the children are at school? Why isn’t she cleaning, shopping, researching, doing laundry then? Alyssa, who is almost six years old, has never received more than three hours a day in services from school, and this year, I am responsible for her transportation. Volunteering at school during that time takes time away from home.

There’s an ARMY of these children coming, which means an ARMY of families like mine, who need support. We’ve all seen the rising numbers. When these children become adults, many are going to require support, at a huge cost to society. We know that intense early intervention works, and we know that using parents as part of therapy gives a better outcome. In order to do that, we need help that we’re overwhelmingly not getting. So, your support now means fewer individuals need support later, as our children enter adulthood, saving money for society, and giving our children a chance.

I want to encourage you all to THINK OUTSIDE THE BOX, and I want to share some ways that you as friends and family, can help families like mine.

Obviously, we need your financial support. Most therapies are not covered by insurance, many of us do not qualify for any sort of assistance, and the weight of the financial load on us is gigantic. I think of costs in terms of “Alyssa hours”. When our clothes dryer died, I cringed over how many “Alyssa hours” a replacement cost.

We need your time.

Offer regular, weekly time to babysit siblings so Mom or Dad can work one-on-one with the autistic child. Or volunteer one-on-one time an hour a week doing arts and crafts with the child.

Offer several hours each week to the family as a volunteer therapist for the long term.

Siblings are often overlooked, and feel left out as they watch a parade of tutors come to give attention to the sibling with autism. Your time to make a sibling feel special is especially appreciated.

Offer to baby sit all the children in a family. Every once in a while may not seem like much to YOU, but to US, it’s a huge gift. One wonderful couple from church gives us a night out every once in a while for a much needed date night. Last Christmas, knowing we wouldn’t spend “Alyssa hours” on ourselves, they bought us tickets to “The Glory of Christmas” and a gift certificate to a Northville restaurant while they baby sat the children, to give us a magnificent night out that we wouldn’t have had.

A woman from church tells us to choose a Saturday in December so we can complete our Christmas shopping while she baby sits.

We need spiritual support. Pray for us. If you don’t know what to pray, www.childrenofdestiny.org e-mails daily prayers for friends and family.

Again, offer to baby sit so that we may nurture ourselves spiritually. We had a “40 Days of Purpose” program at church, and there was no way we could participate because of childcare problems. But a woman from church called and offered, “If you’ll choose a 40 Days Small Group on Saturday or Sunday, I’ll commit to watch your children during this 6 week study.”

Last summer, we were invited to participate in another small group. The family with an in ground swimming pool hosted, and they found a newly graduated special ed teacher with experience in autism to swim with our children while we studied God’s word. And they surprised us by paying the sitter.

Accommodate us whenever you can. The Children’s Minister at our church allows me to bring GFCF (Gluten Free-Casein Free) “safe” snacks for Alyssa’s entire Sunday School class. Community Bible Study was not accommodating, however, and we were unable to attend.

Offer to be a shadow for a child at Sunday School. Alyssa escaped unnoticed from her class one Sunday, and for her safety, we never leave her without a shadow. One sweet woman at church shadowed Alyssa every Sunday morning for two years. When she took a break, four more women stepped forward to help on a rotating basis.

And yes, my small group from church is here, watching your children in child care today. This is the second time they’ve offered their time in child care at an autism-related event.

Help us at home: One neighbor took a basket of unmatched socks home and returned it the next day full of matched pairs. Two other neighbors have been helping me get organized, to dig out of my clutter.

A helping hand could be a simple as a call before you go to the store to ask if we need anything.

Offer your outgrown or discarded toys. They might be a great fine motor activity, or contain pieces we can use in an ABA (Applied Behavior Analysis) program.

Offer to gather items for us. When the ABA consultant gives us a list of items we need for our next set of programs, the child can’t begin the programs until we come up w/ the items.

Accommodate us in your neighborhoods. We have been looking for a house in a school district more familiar with autism. We have encountered association after association that bars us because we require a fenced in yard for safety and as a visual boundary for our child with autism. This is discrimination.

We need your action, politically. When someone contacts you and asks you to write a letter or call your senator or other lawmaker, DO IT. We DESPERATELY need YOU to help us educate school board members and legislators, and to demand change in the way children with autism are identified and educated. There is not enough OUTSPOKEN OUTRAGE at the way our children are being ignored, and as a result, lawmakers simply do not know about our situations, and about how much the costs will rise in a few years because these children are being ignored today. My school district STILL offers only 2.5 hours of early intervention a WEEK. Many schools would rather teach the child coping skills than work to remediate skills and recover the child from autism, giving parents no choice but to spend time and money to do the work at home or in private settings. Our children don’t have time to wait for the schools to get with the program!

With all the wonderful examples from our own situation that I’ve just given you, I’ve painted a pretty rosy picture. I want you to know that the obstacles and needs outnumber the help we’ve received about ten to one.

And I return to what I began with: costs. There’s a study from Eastern Michigan University that says for every dollar we spend on early intervention, we save seven dollars later. If we as a society don’t help families like mine in big ways and small ways, we’re all going to pay the costs in a few years. If you think Social Security is in trouble now, wait until this explosion of autistic children reaches adulthood. Think about it. We can pay now, or we can pay later.

As a parent of a child with autism, I’ve had to learn to take offers for help when I get them, and to ask for help when I need it. Parents, have your list ready, so that when someone says, “Call me if I can help,” you can answer with, “Thanks for the offer. I need a sitter for a conference next month.”

The bottom line is that we need one another. Society needs for parents to be able to work with our ASD children, and we parents need the support of society in many ways in order to do that. Parents, learn to speak up, ask for help, and friends and family, look for creative ways to help us out. And when we both do just that, everybody wins, especially the children.

Thank you.

    

Also see Penny's book reviews: Eating Gluten-Free With Emily: A Story For Children With Celiac Disease and Making the Most of Plan-Do-Review

 

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