All during April, Aiming Low Does Good is participating in Autism Awareness Month.
One of the things we’ve learned already this month is that there is no singular definition of or typical experience with autism. Each journey is different. Today we want to share with you one mother’s journey.
Katrina Carefoot writes for the award winning website Fickle Feline which she founded in 2004. Her candid writing and bare bones honesty have won her accolades from both the Mental Health and Autism communities. She is an Autism advocate and is currently documenting her Autistic son Max’s journey for a book she is writing on how to achieve a best outcome for Autism through early intervention and intensive therapy. Katrina thinks raisins are just rotten grapes and is not afraid to share pictures of herself looking completely ridiculous. She hates her cat and very much looks forward to the day that her two year old daughter turns 18 and moves out.
This is her story.
Without fail, the first thing I hear each morning is my son Max yelling “mommy, daddy, open the door, Max poop”. Every day, before I have even put a foot on the floor, I mentally kick myself for not getting up earlier than him to avoid all of this. If only I had gotten up, I could have woken Max up and positively reinforced the fact that he had not woken up and immediately stripped off his pajama bottoms and pull-up and dropped a deuce on his bedroom floor. Instead, I selfishly remained in a blissful slumber, allowing my five year old son, who has Autism, to once again repeat this undesirable behavior and further ingrain it into his daily routine.
For some reason, this responsibility rests squarely on my shoulders. Apparently I am okay with this, because rain or shine, it is me who is on her knees cleaning up feces every damn day. Perhaps it is a self-assigned punishment I have taken on to fully embrace mommy martyrdom. This is not the only time I will fail my son today. This is not the only time I will feel a deep sense of shame for not being good enough, strong enough, or energetic enough.
I let him watch his favorite television show every day (Elmo “Happy Holidays”), so that I can sit and drink tea and surf facebook. He is allowed to wander around the backyard moving rocks from one end of the yard to the other while I make dinner. I don’t make him sit down to eat his breakfast, he wanders around the house, circling back to the kitchen table to grab another bite every few minutes while I flat iron my hair. And sometimes he goes up to his bedroom to sit on his bed and rock back and forth while he plays with one of his many toys that lights up and recites letters and numbers while I fold laundry or some other unimportant task that really should take a back seat to me spending every moment I have to engage him.
The list of imperfections in my mothering is long and growing by the day. There is always something I could be doing better for Max, that would help him develop faster and acquire new skills. The pile of Autism related reading materials on my nightstand stands taller than my lamp (and are gathering dust due to inattention). I probably don’t show enough physical affection. I often choose to do housework instead of sitting with him for floor time. I feel a huge sense of relief when I drop him off at school in the morning. I feel dread when I see the phone number of his school appear on my caller ID during school hours. All told, I am completely imperfect at mothering my child with Autism.
I should point out that I have never felt ashamed of Max. To the contrary – I am the first to celebrate his wins and give him high fives. I am proud of him to the point that I imagine people are sick of hearing about how well he is doing. But I don’t feel like I am the reason he is having progress. That lies in the hands of his therapists. I am just his mom, and maybe that is really what he needs me to be. I want so badly to be a mom who can do it all, that is on top of everything and exuberant and has enough to give to everyone, especially him. It isn’t realistic though. And wasting energy feeling shame about my imperfections takes me even further away from my goal of helping Max have a happy and fulfilled life, whatever that looks like for him. I wonder if I am the only mom who feels this way, or if it just a part of initiation in the “moms with kids with special needs” sorority? Or maybe, all moms feel this way, just a little.
Tomorrow, I will wake up before Max. I’ll do better. Maybe. Tomorrow…
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We are humbled that Katrina offered to contribute and support our efforts this month. Do you want to get involved?
This month we’re raising money for Autism Speaks.
And giving away a brand spanking new Blackberry PlayBook tablet.
Get on the bus… here.
About Aiming Low Does Good
Thank you for being a voice for your child and for all the kids (and adults) who NEED voices that are LOUD and PROUD.
We are celebrating with you!
Twitter Name: Anissa Mayhew
I want to be the mom that does it all, too. it doesn’t seem fair that I can’t be. I know, I’m expecting to be supermom and it’s silly but I still want it. I want to be able to do it all for my kids and deal with their issues and help them make progress and still be “normal” and be the bets wife and mother and…yeah, I know. Unrealistic. But it’s there.
Twitter Name: thedgoddess
Thanks for this. Because we ‘Mums of Autists’ know that there are interventions and strategies that could make huge huge differences to our children we somehow then get the impression that we SHOULD be doing absolutely every songel one of these just because they are available, and ‘Every mother wants to do what’s best for her child’ right? But when it comes to it there just is not the time or the MENTAL and physical strength to do everything and so then, suddenly, we feel we are failing our children. Despite already doing ten times as much as many other mothers feel they need to do for their children.
I hear you sister!
Helen (British, living in Sweden, 6 year old Robin is HFA and 2 year old Joseph is just 120% two year old)
You make such an important point, we are the mothers. We have to take on all these other roles of teacher and advocate and therapist but we still have to mother our children. I know we feel we should be doing something someone else has told us to do with our kids every waking minute but don’t they also deserve to be kids? We can’t do everything, we can try, we can do our best, but we can’t do everything.
It can take a while to learn that, especially when we see or hear of someone else who seems to be doing just that. Frankly I don’t believe it, something has to give somewhere.
No more self-flagellation for not being perfect, that helps no one.
Twitter Name: penbleth
I could have written this post. We do what we can with what we have.
Twitter Name: liz sturrock
Thank you for reading everyone! I was worried all of the comments were going to say “you should be ashamed of yourself! you are a terrible mother!!)
Also, thank you SO MUCH to Aiming Low for allowing me to share a bit of my story.
I definitely think this is true of most Moms, I KNOW it is for this one. Great post!
As someone who knows you IRL, you are most definitely not flawed! I think you described pretty perfectly how most mom’s feel. Any mother that doesn’t admit to putting the TV on so they can make dinner or just go to the bathroom in peace is a liar or a masochist.
Maybe you are flawed, but no more than any other person is flawed, y’know? Two of my three kids have Asperger’s (well, one is diagnosed with such, the other is just my speculation at this point). Two of my three have mood disorders (my daughter got the double whammy). There are just not enough hours in the day to do everything that could be done to mitigate and compensate for their conditions. No matter how much I try to do to help any or all of them, I fall short.
If you were a perfect parent to our autistic child, I might have to hate you. I look bad enough on my own, I don’t need other people doing it all properly to bring my status down even further ;-)
Twitter Name: MamaKaren
I COMPLETELY relate to this piece and love it. My son is not autistic but has Mecp2 Duplication Syndrome which share many of the traits of autistic children plus it’s own set of challenges. Perfect piece, thank you!
A beautifully written post that I think ANY mother can probably relate to! It sounds to me like you’re doing an awesome job as Max’s mom. As mothers we are burdened with so much and we are the first ones blamed. It’s a tough role. I have a very challenging child and I have been told by family members that I’m the reason she’s so difficult (!). Although she isn’t technically special needs, she has her own special needs and I try to stay strong, knowing I am doing an awesome, albeit imperfect, job as her mom.
This, exactly.
Twitter Name: mariamelee
I love this so much I cannot even express it adequately.
There is a whole lot of stuff you can do, but not all of it work. In my experience, most of it doesn’t. We find our own ways to help our children, and I think one of the most important is to remember that this is his experience. You have your own and you have deal the best that you can with it.
The bottom line is, at some point you’ll realize that any progress to made has already been made and it’s time to learn how to live with what you’ve been dealt.
It’s not an easy road, but you have to gentle with yourself. You’re one person and you have other responsibilities as well. Some of these are even to yourself.
I hope you can find your peace.
Twitter Name: msmegan
First off, yes, I’d say that Most moms feel that way time after time – that we don’t do enough – that we should be more – whether we have a child with special needs or not.
I am a teacher for children with Autism and my perspective and attitude towards parents has changed drastically since I’ve become a parent myself. While I was always empathetic and tried to be understanding – I admit now that I didn’t fully understand until I was a parent myself.
We always have the best intentions and KNOW what we SHOULD do…but there are a million things to be done every day and million battles to fight here and there…we simply can’t do it all. But like you said – accepting that instead of beating ourselves up over it is better for everyone. We do the best we can and love with all our heart.
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I’ve been blogging for Autism Awareness all month long.
Twitter Name: zewsb