On The "Mommy Instinct" and Autism
Jenny McCarthy used the term "mommy instinct" to describe how she knew exactly what was wrong with her son Evan - and how best to find and obtain the ideal treatments for his autism. But McCarthy is far from unique in her belief in special mommy insight. In fact, the idea is everywhere - and it's turning us moms into a sort of parenting superhero - assuming that we can live up to the challenge.
Not long ago, in a conversation with an acquaintance, I was discussing possible school settings for my son, Tom, who had been diagnosed with a form of autism. "But you know what he needs," she said. "you just have to advocate for him! You can make it happen!" Now, I know she meant those words to be supportive and encouraging. But to me it felt positively scary.
I DIDN'T know (and don't always know now) just what Tom needed. Would inclusion be best? What about a support class? A better aide? Maybe biomedical interventions really would help - or not!
"Just advocate?!" Short of hiring a high powered, high priced lawyer to fight not only the school district but also the county - and then hiring a full time advocate to sit in Tom's class and point out problems - advocacy wasn't going to have much impact. And since I didn't have the money (or the energy) to fight in court over the quality of a 1:1 kindergarten aide, there wasn't a whole lot I could do.
"You can make it happen?!" Um, no, I couldn't. I couldn't "cure" my son's autism, fix the American school system, or even be certain that the treatments and settings we finally DID choose were best for Tom. They seem pretty good - but who knows what would have been better? I guess only supermom would know.
At the time of that conversation, I was too chicken to say what I really felt - that I DIDN'T have that "mommy instinct" that would provide my child with all he needed. I just nodded and smiled and felt insufficient, overwhelmed, and terrified that I'd be "found out" as an ordinary, un-super mom.
Over time, I've come to the conclusion that the "mommy instinct" may be much less common than we think. Sure, we moms can tell without looking when our kids are sneaking treats. We may know that something's wrong when our child has "stomach aches" before school every day. But I just can't believe that "mommy instinct" can diagnose illness... recommend treatment... preview the future... and provide for every contingency. Any more than I can believe that mothers, by virtue of their special powers, can single-handedly advocate their children into physical and mental wellness.
After all - there's got to be room out there for the guys to exercise their "daddy instinct," right?!
Comments
I have felt exactly like you after watching Jenny McCarthy on Oprah- I don’t have the money to have my child go to a special school, I don’t have money to hire an attorney either. I am crossing my fingers and hoping and praying that my son who is 4 with low functioning Autism will eventually learn something in his school.
After watching Jenny I felt like a loser..like I wasn’t doing enough since her son is OK or better now.. I tried my hardest to help my son, but it’s like she has cured her son- I, too, have my son on the GFCF diet- he has been for a year, no difference- and he’s in various therapies and public school full time 1/2 day aba and 1/2 day in a “regular” class with an aide- the school tells me it’s the best.. but really how do I know?
Hmm I live in the Uk so I did not see Jenny on Oprah. I do not however feel that it is fair for anyone to go on National TV and say hey look I did this and cured my son of autism. Maybe it was not quite like this but you get the picture.
I have been living with this autism for 20 years now so I have been around the block and some. In the UK we have a state system that quite frankly stinks but that is a different issue. We also have to fight for our children and there are no where near as many interventions pedaled at us in the same manner as they are in the US. I am actually grateful for this because I would not have known where to begin at the point of diagnosis. For startes we lost 10 years between our raising concerns and our middle son finally getting his dx. Again in a way I am grateful because he was passed the age for intervention - or so we thought.
I have found that life with autism in never a straight line, nor is it a curve. There are peaks and troughs which present as times of progression and regression. I have seen this happen with both of my sons. There are times when we are having a progression when I wonder if one or the other is growing out of their dx, but when we have a regressive period I know for sure that this is never going to happen.
What am I trying to say here. I think that Jenny is going to have to wait and see how things with her son work out here. Those of us who have adults with AS/HFA have found that they do tend to become more autistic as they hit puberty. This is when intervention is most needed because this is when a child can be lost to autism altogether in my opinion and remember I am just a Mom. Now that my son is 20 I feel as if he is now becoming less autistic but this is really because he is adapting and learning to live with his condition. He found himself and is now quite happy with who he is.
I have a ten year old yet to hit puberty but who also made HUGE gains from the age of 3 to 5 and then regressed between 6 and 7. At the moment we are sailing along in pretty calm waters but who knows when the next storm will blow up.
And yes daddies do count to. I would have been lost with our ‘daddies’ instinct.
Daddy’s have instincts! We also have doubts. Sometimes there is no “best”. Sometimes it’s just a choice between different approaches of good or OK.
He found himself and is now quite happy with who he is.
Much more inspirational message to me than what I’ve been hearing a lot lately.
Thanks.
Thank you for saying out loud what I have been feeling for so long!!!
Even before I ever dipped my naive little toe in the sometime raging waters of ASDs I didn’t have that infamous mommy instinct. In my early mommy years, I used to sit around and listen to fellow moms expound about what was going on with their kids … “Oh, it’s gas…” “Oh, he’s teething…” Blah, blah, blah. Really? How are you so sure about that? I always wondered …
My kids were loved and very well cared for. Through trial and error I figured things out. BUT, with something as complex as the severe autism I’m dealing with with my four year old, trial and error just doesn’t always work.
To me it’s bitterly ironic that as a mom I’m supposed to just know … just figure it out …
I hate to admit it, but sometimes I just can’t! I need help …
So when Oprah lauded Jenny and Holly for being warrior moms, I knew that she wasn’t a mom herself … or she would also laud all of us who are confused and sometimes need some guidance…
This warrior mom knows that she can’t win the battle alone …
Wow … I feel better after venting about that! Thanks!
Judith
http://parents.com/autismville
I’ve got to say, I’ve got tears in my eyes after reading your article and the above comments.
“The warrior mom knows that she can’t win the battle alone…” really says it all for me. What a crazy, sometimes seemingly impossible, sometimes miraculously rewarding, often just plain tiring journey this has been (and continues to be) for me and my family.
My son is 6 years old and has just begun kindergarten at our local public school. When he rode the bus for the first time, I breathed a sigh of relief. But when the principal and the teachers and the specialists began calling me two days later looking for the answers to their questions– “You know him best! You have that mom instinct. You lead the team, tell us what to do!” — I almost started to panic. I don’t have all the answers!! I need the whole village’s input to do this, raise this child.
My turning point came literally three days ago when, in speaking with a friend about my feelings of confusion and failure at not knowing how to help my son make this kindergarten transition, I realized that there’s nothing wrong with *me*. I don’t need to know everything, I’m not supermom. (Hear that everyone?? I’m NOT supermom!!) I just need to do the one thing I know I can do better than any other mom out there– love *my* child, and keep trying to do my best for him.
Thank you all for expressing so eloquently what I’ve been secretly thinking about and struggling with. I am glad you are out there and that you truly “get it!”
Cathy
No matter what anyone calls us, we are people that LOVE our kids with and without autism. Parenting is difficult in the best of circumstances for those of us who really love and care about our kids.
For me it is about sharing and trying to learn what has helped others. Just the fact that more and more of us are connecting/networking will benefit our kids and their kids and so on. Just the fact that we are starting to knit things together to find patterns that could help each other now could lead to finding the root cause of autism. I think most of us know that diet isn’t the “cure” or we wouldn’t be having the conversations.
I appreciate very much Carole your insight into the progression, regression experience because I’ve noticed this in my son. It is good to know that someone else is experiencing this. You are the first person I’ve connected with that has mentioned this. Thank you.
I am EXCITED that more and more people are talking about autism. At this point we are all searching for answers. The main thing is the connection and the communciation.
My son is 9 and is in his 4th school. We’ve found a school that realizes that it is important to become educated because this dx is one the rise in our community. The teachers are taking classes, the school board is progressive and thoughtful. I realize I’m very fortunate because someone in the past has spoken out, been a warrior, had the money, whatever it was that got the school system to this point.
All we can do is the best that we can do. It sure doesn’t help to beat ourselves up about not knowing something.
Thank you for all for writing about your experiences and thoughts. I search daily about more information about autism so I can be as informed as I can be. I’m not a super mom, I’m a mom who cares and loves my kids, just like everyone else.
www.thecanvasgrey.wordpress.com
I trust the “mommy instinct” — when I have it.
I knew something was wrong with my son from the start, but the first doctor thought it was more of a “nervous mommy” problem than instinct. David was 18 months old when I found a doctor that listened. Of course, now I feel I should have trusted my own instincts more and pushed harder.
I wish I had such instincts when it comes to what’s best for David, who is now 21, but I’m trusting teachers and experts unless that little bell goes off in my head.
I’m glad Jenny McCarthy is bringing attention to autism, but I wish she didn’t make it look almost as if everything’s all right now. For some of us it will never be “all right.” We’re just learning to be happy with the way things are.
I had the instinct to be aware that there was a problem with my middle son. Despite this it took the professionals ten years before they listened to me. My two were diagnosed within six weeks of each other one aged 13 and one aged 3. Despite the instinct of knowing that there was a problem I really needed hands on help and advice after the diagnosis and that was when I found out that it does not exist. Part of the reason my eldest never made the return to school was because I did not know what I was fighting for. I gave up fighting and home educated and found that I had accidentally did what was right for him. I was told that the best thing for my youngest who was none verbal was to get him into a Nursery which we did. Within six weeks he was beginning to speak within three months he had made up all of his ground verbally. However I now wonder if this would have happened anyway and I think perhaps that it would of. This is the thing with any interventions we may opt for; we will never know for sure if it was the intervention of if the time was just right for our kids. By the time my son was five I was beginning to wonder if they had gotten it right. However a move into year one schooling proved to me conclusively that there was no doubt. With the change came the regression and this is how it has continued for both of mine. When they are under pressure, stressed, out of their depth the autism becomes much more evident. They lose skills and take a backwards step. The thing is with my sons it is often sometime after the stressful time that the regression cuts in. I saw this when my Dad died. They both appeared to cope really well with his death even though he played a big part in their lives. It was six months later when the cracks began to show and we had a really rough ride.
Yes I have pretty much learned to read my sons now but mainly because I was forced to. I try something and if it works great I stick with it. If it fails I rethink and try again. However I no longer feel a failure if I do get it wrong, because I now know that many of the professionals who are often paid mega bucks also get it wrong, and can also never be sure that their interventions are going to work. As parents we may have a vested interest because they are our kids, but some help would be nice now and again without being made to feel that we have screwed up.
If you have a question and don’t know what to do - ASK SOMEONE. READ A BOOK. Don’t have a pity party.
My son was diagnosed ASD over a year ago, and I’m still actively turning myself into an Austism expert. I’ve read every book, contacted every organization, taught myself the therapies, we’ve tried the diets, supplements, medications, seen many doctors. And I hired the high-priced attorney to sit in on our IEP meeting and make sure my son got the best Public School program he could get - and I’m a single mom who makes $28,000 a year. What else could I possibly spend my money on?
I’m sorry, but anything less than that doesn’t just make you an “un-super mom,” it makes you a bad mother.
What on Earth is more important in your life than your child’s well-being? Get up off your butts and educate yourselves and save your children!
Jeez! It isn’t as if you are a good or bad mother because you are unsure…It is just that many mothers knew something was wrong long before the medical establishment was willing to accept it.
In the time we were waiting for “professional” recognition, many of us moms were doing exhaustive research to figure out what IT was. That does not make us supermoms, per se. What makes us all supermoms is the fact we are working our tushies off being mothers, wives, sisters, daughters, maids, chefs, laundress’, trash man, computer researcher, floortime, behavioral, speech, occupational, physical therapist, all-night nurse, all-day babysitter, and we have not run screaming into the night, never to return; despite a deep-seated desire to do just this - Calgon, take me away!!!!
Thanks to what I learned, my daughter’s future has changed from institutional to unlimited (so far, she is
. What I know, for sure, is that although she will always have autism, it will be up to her who knows. She is not dependent on any drugs to control her behavior, she has learned how to manage herself and her behavior.
I don’t need to tear anyone down to build myself or my daughter up. That said - when I find somebody succeeding, I listen to what they have done and decide if it is safe; if it is, and I can afford to, I try it — nothing ventured, nothing gained.
We are all great moms, we just have different levels of ability and financing…
One thing that was missed was denial. I had it, had no idea what autism was or what my child would need. I cant say I did or didn’t have ‘mommy instinct’ since I wasn’t sure that my son exactly had anything. He did have something- choices for our kids doesn’t end at age 5 either- it’s pretty much life long with a child who has any disability.
I also have to say since each child is so different, just how is a parent suppose to know just the right road to take? The right choices? If you choose the wrong ones does that make to less of a mommy with instincts? I’m not sure if “mommy/ daddy/ parent instinct” may be much less common than we think. I believe if anything, it’s played up too much and a possible result is the parent feeling like a failure.
We’d all do what was needed no matter if our children had autism, down syndrome or was typical and just having problems. We’d do this because we were good parents- not super human parents
I suspected something was not quite right with my grandson when he was almost 2. He was not talking (not even babbling). He did not look at me or anyone in the eye and he did things over and over. I went online and googled both symptoms and up came autism red flags. I mentioned this to my daughter and she followed up.
Now my grandson is on a GFCF diet and supplements prescribed by a DAN doctor. He is in public school 5 days a week and is progressing daily.(VA schools are way ahead of the pack) He is not yet 3 and we have high hopes. It takes a village to raise a child. Everyone involved with a child should be aware of any kind of unusual behavior. Good luck to all of you.
Your article put into words what many of us parents have felt. Well said! In fact, I would have gone on the talk show circuit to explain just what you explained, but I don’t have the time and money. Maybe if I did, I’d have been able to find my mommy instinct. Instead, I had to muddle through just like you and the rest of the parents of children with autism. Nobody has all the answers to our questions or problems, and I challenge anyone’s mommy instinct that tells them that someone can cure their child’s autism.
I concur w/ everyone who commented. I watched Jenny for a few min. and had to stop. My reality is far from hers. I am a single parent who hasn’t the funds for a special private school or even to home-school. I rely heavily on prayer and educating myself. After having some loud and heated discussions w/my son’s school, he is receiving services I am well pleased w/. But w/ these kids, the battle never ends. It justgoes through lulls. Thank God for my child teaching me to fight.
I don’t think the problem is having a mother’s instinct, and Jenny McCarthy has been a God send in giving her testimony about autism. Yes, it’s difficult to watch someone with more resources get what they need and help their child when you don’t have the same resources and the same interventions do not work for your child. It isn’t fair, but that doesn’t mean that she was wrong in stating what worked for her and her son. I wish it were true for my son too, but that doesn’t mean she’s wrong for speaking about her intuition. Yes, after watching her, I felt like I needed to do more to help my son, and I do. However, I know I am limited by not being a celebrity, and that’s the case for any disorder. Celebrities have access to resources that the common people don’t have access to. Wealthy people can pay high prices to send their children to special schools, employ nannies, nutritionists, etc., but that says more about our government, health care and educational systems than it does about Jenny. It’s not fair, and it needs to be changed. We should all have the same access to interventions for autism regardless of our economic status. However, what I also got from Jenny’s testimony was that even though she is this great beautiful celebrity, this road has been absolutely hell for her. How validating! She said that when she got the diagnosis, she died inside. She said that she had to quit dating and focus on her child. She had to change her life. How validating! I have personally seen my mother’s intuition activated on numerous occasions, but it is not always activated. I feel like the more my son is in danger regarding life or death, the more activated my intuition is. I feel that it’s a primal instinct and that it is from God, and keeping my son alive is the most important thing that activates mother’s intuition. Choosing between different types of therapies may be important for my son’s quality of life, but it may not necessarily activate the life and death mother’s instinct. Remember, Jenny’s son had some horrible seizures where his heart stopped beating. Also, if a mother has a child who dies, that doesn’t mean she wasn’t following her mother’s intuition. There are just some things that we will never be able to answer on this forum or in life. I don’t know the scientific explanation for mother’s intuition, and everyone is entitled to their opinion, but I just don’t think attacking mother’s intuition or Jenny McCarthy is the answer. I personally believe that all mothers have intuition, and some are more in touch with it at certain times than others. Some mothers trust themselves and the fact that they have intuition more than others. This doesn’t always mean that there’s no confusion especially in treating autism, and it doesn’t always mean that you’ll get the results you want. I think we all just really need to do the best we can. I’m sorry that you feel guilty. What I saw from your experience was that you didn’t have the same resources to fight autism that Jenny has regarding income, etc. If you know you are doing the best that you can then that’s all you can do. Sometimes your best is you giving more and sometimes it’s you giving less.
Interestingly, I even nedumala about it …