twitter facebook stumble upon rss

Three Ways You Can Help a Mom With Autistic Children

sign up for the momlogic newsletter Tweet This

momlogic's Vivian:

As we've seen from a series of downright upsetting events in the news, the stress of raising an autistic child can be overwhelming enough for moms to snap and do the unthinkable. In the past two weeks alone, THREE autistic children were murdered by their moms.

Three

With three daughters on the autism spectrum, Kim Stagliano knows these stressors quite well. "When you are diagnosed with something like diabetes, there is a plan," she says. "Autism is very different. Your suggestions, your access to services and the budget availability is subject to where you live and who you happen to see. There's very little handholding, and that's why parents are under so much stress. You [must] always be hyper-vigilant of [the autistic child's] safety. They might step right into traffic, because they don't have a sense of danger. So every moment is fight-or-flight. There is very little letting your guard down, because if you do, the results can be catastrophic."

Another stressor: The simplest of social situations can easily become a minefield to navigate. "When you go into a grocery store with a child in the terrible twos and your kid has a tantrum, you get knowing smiles from other parents," says Stagliano. "Autism is invisible until you see the behavior, which sometimes seems really odd. They have meltdowns regardless of age, and you don't get the same kind of sympathetic looks from others when the child is 16. It's debilitating. And a look of surprise from others when these things happen might be enough to break your heart."

Through Age of Autism, the online newsletter she edits, and a book chronicling her personal journey with her children, "All I Can Handle: I'm No Mother Teresa" (due out in November), Stagliano hopes to provide support for other moms of autistic children.

If you know a mom with an autistic child and you'd like to help, Stagliano says these three simple gestures can go a long way:

Give Her Some Time
Autistic children are usually most comfortable in their own homes, so offer to go to her house and insist she leave and take some time for herself. "It's like triage," says Stagliano. "Even if she goes to Starbucks for an hour, a break will be a huge help."

Know What She's Dealing With
Take the time to read a book about autism, such as "The Autism Book" by Dr. Sears, so you'll have a better understanding of what she's going through when discussing her issues.

Food = Love
Stagliano says that the simple act of dropping off a dinner -- or the means to a dinner -- will mean the world to the mom of an autistic child (who has so much to juggle). "Some autistic kids are on gluten-free diets, so even dropping off a gift card to a natural-foods store for $20 shows you care and that you are thinking of her," she says.


next: Is It Possible to Talk to Your Kids Too Much?
67 comments so far | Post a comment now
Kim Stagliano August 10, 2010, 9:43 AM

Autism Dad - consider me duly spanked! You are quite right. My husband is my ROCK and he can do anything I can do for the girls, short of giving birth to them way back when. He changes menstrual pads, cooks meals, cleans up after them - like the dedicated pro he is - and I’m sure you do too.

So… DON’T FORGET DAD! Especially as autism typically strikes boys and it’s damn hard for Dad to see his son suffer or lag behind his peers.

Thanks, Autism Dad. Peace.

Kim

Kim Stagliano August 10, 2010, 9:49 AM

This post was to help Moms (and Dads, ahem) deal with the stress of autism - isn’t it sad two commenters had to come in and add to our stress. Some people fake cancer - I doubt they’d go into a cancer-related post and say, “Oh the bone pain wasn’t so bad at MY house and I think you’re all just faking to get free wigs!”

Think about that…

KIM

Catherine August 10, 2010, 10:17 AM

Darn it, I didn’t know that I had a choice in my daughter’s diagnosis - can I trade her severe autism for ADHD please?

I’d be more than happy to parent a child with ADHD and without a school IEP and medications and special diet and 30 hours a week of therapy so that I could go back to my teaching job and have a life outside of autism.

I don’t think that I would mind parenting a child who can have regular play dates and be on a sports team and have dance recitals. Or even, have a birthday party because she enjoys having people at our house and has friends to invite.

I guess I made the wrong decision when I asked the doctor to diagnose her with autism. I guess I should have been more informed!!!

Ann August 10, 2010, 10:27 AM

Until you have a child with ASD, you have NO CLUE! Mary, the tantrums probably do not happen at your place because you are not the parent. Our kids are with us most of the time and they tryu to see what they can get awau with. My son TESTS me all the time and does not get his way. ANY kid (asd or nt) acts different when they are at school, at friends, at therapy…
I would love to have you spend a week 24/7 at my house on your own .

AutismDad August 10, 2010, 10:35 AM

Thanks, Kim. I didn’t mean for my post to focus only on the negative. It was a fantastic article. I wish everyone in the world could read it. :)

To Mary and Jamie: It is simply not the case that parents of autistic children, as a rule, are looking for a diagnosis to excuse bad behavior or that they are seeking a diagnosis just to obtain medications.

My wife and I were most certainly NOT seeking a diagnosis at all! I have a PhD in psychology and, quite frankly, I saw the signs of autism about a year before our son was diagnosed. I simply didn’t want to believe it. With every fiber of my being, I wanted to believe that our child didn’t have autism — even though my professional training told me that he did.

As long as I live, I will never forget the moment when our son was diagnosed. My wife started crying — and I mean BAWLING. It was the loudest cry I think I have ever heard. In that awful moment, every dream I ever had for my son went out the window.

I looked down at our 4 year old son who was playing on the floor three feet away. He never even looked up. On the way home, I asked him how he thought his mother felt in the doctor’s office and he said “I think she was happy”.

He’s 8 years old now and, on a good day, you might not realize that there is anything wrong. On the bad days (of which there are still many), I feel like my guts are being ripped out.

Jamie and Mary, perhaps if you had been there in that doctor’s office that day and seen a 6’3”, 200 pound, athletic man crying like a baby you might not be so ignorant as to think this was something we wanted so we could avoid the responsibility of parenting.

Jessa August 10, 2010, 12:05 PM

I thought this article contained excellent suggestions on how to support autistic mothers (and fathers!)
To Mary and Jaime RN,
Just like the others, I am shocked to read what was stated in your comments. I am not a parent but I am a former behavior therapist who has worked with autistic children and their families for years.
First of all, Mary, the child who visits you is compliant with you because you are not the parent. You don’t have to place demands onto this child 24/7. Especially if the child is coming over to play! If you are associated with fun, chances are you will not see many of the behaviors. I’ve worked with parents who struggle with their children because they are the ones who have to get them to eat, to sleep, in the car, to go potty, to get dressed, to bath, to go to school, etc. Everyday! And for some parents, is a battle every time. As a therapist, I had to place demands constantly and I got to see the tantrums as well and I never “baby” the kids. We do get compliance eventually but the difference between myself and the parent is that I get to go home at the end of the day. The parents don’t get a break at all. I feel for these WONDERFUL parents who literally work their butts off for the well-being of their WONDERFUL children. And they do work harder than other parents.
And Jaime, as a social worker now, I am appalled to hear that you think parents are just trying to get the meds and diagnosis. Not to say that there are no parents who are like that, but these parents come to you for information and assistance! Not to drug up their children if it is not necessary.

Kristine August 10, 2010, 12:31 PM

Great article! The stress of raising a child with autism is mind-blowing. Most of my day is spent keeping him alive- the vigilance required to keep him safe is more than we can manage some days. Think physical skills of a 5 year old (yes, he can open locks with a key, run, climb- just like a 5 year old) and combine that with the judgment of a 1 year old. Other time of my day is spent driving around the city to therapies so that we can get the simplest word or glance. Then don’t even get me started on all of the advocating both medically and educationally that I do. The school would rather throw a dozen severely disabled kids in a class with an inexperienced teacher and call it an education- when it’s more like bad church nursery. Then we must deal with the public (thank you to Mary and Jamie for illustrating my point). I used to be that judgmental person too when I had my two perfect children. Enter autism. Karma- watch out. I have had exactly three people ask me how my son is doing, what they can do to help, or just generally show any interest in him or us. In fact, not only do people not help- they actively run in the other direction while judging. And they prefer to help “safe” charities or “real” sick kids who could die.
I don’t know ANY kids who have a diagnosis of autism who are “quirky” or spoiled. Even the most verbal, highest functioning child I know with autism is still disabled quite a bit. Nobody *wants* their child to have speech therapy. Nobody wants their child to need an IEP. I know many more parents who are in denial and not getting their children the support and help that they desperately need for fear of stigmatizing them.

Robin August 10, 2010, 12:42 PM

I am going through Nursing school right now and I can’t wait to be there to help parents through this journey. Of course since I have a child on the spectrum I can relate more than the mean spirited people I have read on this post. Open your mind and understand no one want’s this to happen but it does. Be thankful its not you.

Lisa M August 10, 2010, 12:51 PM

A friend shared this article with me, via facebook.

I would like to direct my comment to the author of the article.

Currently there a huge push in the disability arena to use people first language. Professionals, teachers, ect across the board are being taught to use this type of dialog.

This means, putting the child before the disability. So you would say, child with autism, rather than autistic child. There is a wide belief that this will help encourage the world to look at our children before they look at their disability.

To the other folks that have commented.

Seriously, there is such a huge struggle with stigma and the perception of being judged for parents who have special needs kids, that I would rather assume that every parent has a genuine concern and love for the child, so they can seek appropriate help from a professional that can determine the best form of action—- rather than accuse a parent or cause the child more heartache.

If it is a true diagnosis or if the parents just need some help, hopefully seeking help will get them the answers that they need.

Who would want anything less for our society? By being negative and spreading more stigma around social/emotional issues is nothing but deterring folks from getting the help they need. No matter what the cause.

Mary August 10, 2010, 12:52 PM

Again, I am not saying that there are not issues out there. You people want to make me the monster here. I am saying that kids are OVER DIAGNOSED. Not every kid who does not fit the cookie cutter image of whatever book is on the best seller parenting list this week is a bad kid, or needs to be medicated. Kids don’t play anymore unless it conforms to a schedule. Scheduled play that is in a regulated play environment.

Let them go outside on their own and PLAY. Together. Let them get dirty, climb trees, and maybe even cross the street now and then. Hell, we came home when dinner was ready and that was it.

Not one kid had ADD/ADHD/Autism etc, know why? No one invented those terms. The parents left kids alone to be kids and didn’t stress kids out the way they are now. Parents cause half the problems kids have now.

Shelly August 10, 2010, 2:16 PM

Mary,

You should try educating yourself on what the entire autism spectrum is. Many children on the spectrum would not be safe outside playing without close parental supervision. Two examples I know of personally (1) 22 years old, in diapers, non-verbal, cognitive skills of a toddler and (2) 16 years old, in diapers, non-verbal and self-mutalating, cognitive skills of a toddler. What a relief for parents to know that the only thing wrong is that these kids haven’t gotten to go outside and get dirty.

If you would take the time to do some actual research, rather than pass judgement, you’d see there is a lot more behind this sickening epidemic than what you’d like to believe. We have the sickest generation of kids ever in the USA and your attitude certainly doesn’t help.

If only it were as simple as you’d like to believe.


Kristine August 10, 2010, 3:21 PM

Mary- You are wrong, actually. Kids are not over diagnosed. Do you have some data to back up those statements or “just a feeling you get” from some kids you think you know?
It’s attitudes like yours saying that it’s parents’ faults and kids need to get dirty and PLAY and have discipline that makes me sad and angry. I think partly because I used to have that attitude too and then I got a big fat slap of reality when I had a perfectly healthy newborn have a serious regression into autism. Now he is minimally verbal and severely autistic 5 year old. Did I mention that I have two other kids who are totally typical- they have friends, are on the swim team, and they get out there and play? I did everything right for my son with autism- I nursed him for 18 months. I carried him around and played with him and put him on his tummy to sleep- just like I did with my other two.

Because I have a child with autism I know many other families with autistic kids- all over the spectrum. Some of them might look totally normal and even have a conversation with you. But I can assure you that in my years of knowing probably 100 kids with autism, I have never met even one that was actually really just a spoiled brat or needed to get out and play. (I have known spoiled kids, but most of them did not have a diagnosis.) And autistic kids can act in a fashion that is “bratty” but that doesn’t mean that they just need fresh air and less tv.
Research shows that there is a real increase in autism and ADHD. I could point you to fifty articles that say just that. You are right on one thing though- when I was growing up, autism was rare and practically non-existant. Educate yourself. You are way off the mark.

Kim Stagliano August 10, 2010, 4:41 PM

Lisa M - I agree with you. While there are some adults with very high functioning ASD who prefer to call themselves autistic or even auties, and some with Asperger’s call themselves Aspies or Aspergians, many folks use
“autistic” the way they use diabetic. Or in the case of a headline or in writing, sometimes just for brevity. I made sure the subtitle of my book was “A Life Raising Three Girls with Autism” after the editor had added “Three Autistic Girls.” I agree with you. But Vivian doesn’t live in our disability world - and I know she was just trying to write a strong headline. No fault there - I do it myself when necessary. Thanks for sharing the concept though. We’d never call a cancer patient “cancerous,” would we? :) Kim

Mary August 10, 2010, 7:59 PM

This is getting pretty old. You can stop with your studies and facts. It’s not personal as you’re making it. Let’s try this one last time. I did not say Autism does not exist. I did not say there are not kids with issues. It just seems odd that in the last 5 years there are all these kids with Autism. Ten years from now it will be something else.

I know several teachers who do complain about having to spend extra time with kids like this. Again, you’re going to take this as a personal attack on your child. Look at it from the teacher’s point of view. Sure, they smile and say nice things on parent night, they have to.

I’ll be the monster if you need me to be. If calling me names makes you feel better, so be it.

Cindy August 10, 2010, 8:39 PM

It scares me to death that Jamie RN and Mary have these opinions. I am a former teacher and the grandmother of an autistic child. Jamie and Mary, I used to hold some of your same opinions until I have experienced the truth of autism. The parents of an autistic child have been through so much and spend hours learning how to deal with difficult behaviors and teaching their children to talk, feel and respond as naturally as is possible. Walk a mile ….just walk a mile… you simply don’t get it.

Cindy August 10, 2010, 9:08 PM

You’re right there are more children with autism. That’s why we need to learn to deal with it. I do, believe me, see it from the teacher’s point of view. I’m not sure what the answer is for public school where money is getting more and more scarce. I just know that we all need to understand and believe the parents when they tell us there are problems.I hope and pray autism will be gone in 10 years - but I know of no misdiagnosed cases.

John Stone August 11, 2010, 3:36 AM

I don’t know what specific cases Mary and Jamie RN may have come across. Extrapolating from their experience, let alone their attitudes, would be unwise. Difficult to credit their claims anyway. Unlike them we know Kim Stagliano exists.

Writing from the UK where govenment is vastly hostile to diagnosing disability because of the cost (and in the case of autism because of the embarrassment over vaccines) and hot on parent blame, it hasn’t stopped autism diagnosis mushrooming - it happens because the neurological impaiment is so distinct that diagnosis is unavoidable.

In the UK we have the interesting example of the new rate of 1 in 60 cases being buried for half a decade because of the embarrassment. How the state would like all these cases to go away!

John Stone UK editor www.ageofautism.com

Beth August 11, 2010, 4:49 AM

I’m a mom with a 6yr old beautiful child with autism. From a personal experience, getting the official diagnosis really didn’t help us much since our insurance wouldn’t pay anything for autism treatment. So I refute the comments of Jamie that parents wants to get a diagnosis to excuse themselves for parenting. We paid everything out-of-pocket. Those tons of speech, occupational, ABA and all other treatments.. we paid for it all. And for Mary, you really should read up on special education laws. Special ed teachers doesn’t complain because it’s they’re job. I can understand if you’re referring to a gen ed teacher but remember, if the school did a good job in planning and designing the child’s IEP and if the school administrators supports special ed in school, that should never happen. Special ed teachers are amazing and they love their job. They felt honored to be of help and make a difference in a child’s life.. that’s a fulfillment on their own

evelyn August 11, 2010, 7:31 AM

Nice article. Thanks from a mom w/ 2 kids on the spectrum.

Bethanne August 11, 2010, 7:57 AM

Once again the same argument. If anyone says that a child MAY have been misdiagnosed they are ignorant and not supportive. But we have to question that if there are children being diagnosed as having autism/spectrum issues who in truth do not, doesn’t it put added stress on our school system and any organization that assists in the field? Can’t someone question this issue of misdirected concern and diagnosis without being blindly condemned a a heretic? It certainly doesn’t help those who truely need the support and services if we can’t, now does it?


Back to top >>
advertisement