The Truth about Being The Perfect Special Needs Parent

The truth about being the perfect special needs parent?

Wordle: Perfect Special Needs ParentThere isn’t one. Seriously, there is no such thing as a perfect parent, much less the perfect special needs parent. I should know – I’ve spent years trying to live up to this nonexistant ideal. Because these amazing guys? They really needed perfection. Seriously.

Who else but a perfect parent would be able to understand their many nuances, challenge them, love them, push them, adore them, be everything to them?

What I found?

Is that I couldn’t.

The flu taught me trying to be perfect is a sickness itself

Over the last week, I’ve had the flu. Nasty, horrible, so weak I couldn’t get out of bed for days … and I worried about so many little things anyway … and then I found myself picking apart the appointments I still needed to make, an appointment I realized we had missed … I was so upset when I realized we missed this appointment, so embarrassed when I considered having to speak with that office and explain that I had forgotten to add the appointment to my calender.

I ended up so upset over this horrible, inexcusable mistake on my part that I called my husband into the room … the one with social anxiety issues … and begged him to call the office for me. Of course, he looked at me like I had grown two heads.

The fact is … I messed up. I do it sometimes, you know … I’m not perfect – by any stretch of the imagination. As much as I intellectually know that being perfect is vastly overrated, I still find myself wanting to be that mom anyway.

You know what I mean … the mother who magically handles all the appointments, all the social engagements, all the dinners and laundry and yes, even the dishes … and still has the perfect attitude about their child asking a million questions … over and over and over …

I feel the sting of that shortcoming. I still hurt deep inside, because I want to be the perfect mother for them. I want to be the best example of a parent for these amazing guys.

I want to be all things … everything … that they need

The truth?

Is that I’m a little broken inside. I do the best I can … but sometimes …

  • I forget things
  • I yell when I should be more patient
  • I beg for “no more questions” after that hundredth question and wince when it’s asked anyway
  • I don’t get the dishes done for days at a time
  • Laundry? You mean that pile of non-moving almost-living clothing that’s taking over the laundry room? Yeah … not moving
  • I pick the easy road instead of the one we should be walking (constant correction is tiring, after all)
  • I’m not perfect.

There.

Being a special needs parent is tiring

For years, I have juggled specialist appointments, therapy appointments, research, work (when able), school (when mostly sane), and the nuances of four, not three, with special needs in this house. Four, because I’m lying to myself if I don’t count my husband’s needs in there. (I’m not honest enough to count myself as number five…but that is another post!)

The truth is this.

As many times as I make peace with the fact that I can’t be a perfect parent, a perfect special needs parent … it is still something that haunts me. My identity is caught up in how well I parent my kids, and after all these years I still don’t ever feel like I do that as well as I should.

Finding Peace in Imperfection

We all want to be special enough, strong enough, wise enough, patient enough, to feel like we are perfect enough … to handle the storms of life.

We can’t be. It isn’t possible.

It is, however, possible to admit that, to lean on others. Perhaps my own greatest weakness, the thing that stops me from being the kind of parent I want to be … is the simple fact that leaning on someone else is exceedingly hard for me to do. Essential, though … it is essential to being the best parent we can be.

I find support in my faith (yeah, it’s shaken a bit but that’s okay too), I find support in my husband and even in my kids, and I find support in writing, in being … in being just good enough to make it through one day at a time.

And when that isn’t enough, when writing about life doesn’t grant me the peace, when praying about my fears and shortcomings doesn’t help me find serenity … I turn to those who understand. And I find comfort in those who don’t understand, but care anyway.

Life isn’t about being the perfect parent, or the perfect special needs parent, no matter how much I might sometimes think otherwise … no, it’s about finding the strength to back away from perfection sometimes.

It’s about remembering that sometimes we find our greatest measure of peace in allowing someone else to be strong for us for a little while.

What about you?

Do you try to live up to the idea of being perfect?

Are you the mother or father of special needs kids who sometimes, just sometimes, feels overwhelmed because you just can’t do it all well enough? 

I know that some don’t like to use the term special needs parent but I think it’s apt – because we end up living so much of our lives trying to live up to the challenges of those special needs–whatever diagnoses make them up–that we cease to be just a mom or just a dad any longer. 

I would love to hear your thoughts on this – do you feel like being a special needs parent is a challenge, a reward, something to dry and be perfectly? 

Katrina Moody

Katrina Moody

Graphic Designer, Wordpress Addict, Blogger at Kat's Media & More
I'm a special needs parent before just about everything else in life, but also a passionate advocate for my three boys and husband, who all have a bit of awesomeness about them. Awesomeness = Axenfeld-Rieger Syndrome, Autism, Epilepsy, Dyslexia, Cerebral Palsy, and more. It all adds up to some awesome kids and an amazing family.
Katrina Moody
Katrina Moody
  • http://www.notarealprincess.blogspot.com Amy D (

    I think we all feel that we need to be better than perfect. We have to because our kids need more. More than what any one person could ever give. but maybe if I am better, work harder, do more, than they wont struggle as much as they do. More often than not, I fail at being a mom. I struggle with this daily. I try not to beat myself up about it, but I do. Thank you so much for sharing this post. It helps to know others deal with the same things I do, and that I am not alone. ((Hugs)) to you

  • Sylvia

    Katrina, being a mom can be really tough at times to begin with. Adding even one special needs child can make things so, so tough. You have an incredibly unique and difficult situation, and you are an inspiration in the midst of your circumstances.

    I wish I could come give you a little respite, or even a hug. You are right–no one is perfect, and no one parents perfectly. My own mom was prone to depression, and happened to be very disorganized. But you know what? She loved her 4 children as much as any mother could, and that is what she left as her legacy. She died when I was 21. I look back on those 21 years as completely perfect. Seriously!! You are there caring every single day. You are loving that brood and doing everything thing you can. Sometimes that gets tiring, and they may not be able to communicate to you how much you mean to them. But you mean everything to them–your husband and your kids!!! Loving them is enough, even on the days when the laundry piles up, appts. get missed, and everyone eats cereal for supper. You are there and you care, and that is huge.

    When my kids were little (and they all came within a span of 5 years), I was often overwhelmed. We had moved to a big city, and my husband traveled every week. My grandma had moved in with us when I was pregnant with my 3rd (who ended up brain injured/oxygen deprived during birth). She was 96 at the time. She was needy, but very lucid. Some days I would sit in her room and cry. I would ask her how others did everything. I would tell her how ill equipped I felt. She would tell me over and over and over: “No one does it perfectly. If you see someone who looks like they are doing it all, they are faking or cutting corners somewhere.”

    For some reason, we women seem to feel like we have to define ourselves or leave some kind of mark, or rise up to some nebulous level of expectations that come from who knows where. There is so much coming at us that makes us feel the need to “be” or to measure up, or whatever. I sometimes get so, so tired of it.

    I can tell you this. I am so far from perfect it’s not funny. My house is currently in disarray. My kids are all behind on this week’s school work. My special needs son is behind because I feel like the tyranny of the urgent too often squeezes out his needs. I am grieving over leaving a very legalistic background, and I haven’t found my feet. As a result, I have really cocooned myself, and now I’m trying to figure out how to get back into life somehow. I tell you those things only to let you know that you don’t have to feel bad about yourself. You are there, sacrificially loving your family!! These feelings that we have to be perfect are just feelings we have that keep us down. We do not have to be perfect. We just have to be present, and enjoy the gifts we find in each moment. My own mom wasn’t perfect, but she really was!!! I have a strong feeling that is how your family feels about you.

    You are doing so much. I love your tweets, and I love reading your thoughts, even though I don’t usually leave myself much time to comment on blogs. You inspire me. Hugs.

  • http://stuckathomemom.com/ StuckAtHomeMom.com

    Well, let’s see, Right now I have poop in my freezer and counter that needs to be shipped to a lab. The dosage of my daughters meds were upped and I didn’t realize I’d run out early so she didn’t get it today because they are making it now. I have 3 nephews and 2 nieces with birthdays this month the cards are sitting next to the check book. I’m online right now trying to help my sister find a job – I can’t find any for her and I haven’t finished cleaning out the basement or finished the dry walling which I started both this summer. And I still haven’t heard from the state on my daughters benefits and I have no idea where I put the contact paper work.

  • banana_the_poet

    Interesting post. I have always tried to do the right thing. I never tried to be perfect because I had it impressed upon me from an early age I would never be good enough so perfect has never been within my sites.

    But maybe my constant struggle to be ‘good enough’ equates with your struggle to be perfect. Maybe they are different words meaning the same awful feeling of not measuring up.

    I am forever trying to cope with a little voice in my head that tells me I have failed.
    I have a Utopian vision of a tidy house, everybody well fed and happy and moving forward while I achieve some small goals for myself.
    It NEVER happens. The goals for myself being the bits always left out and the tidiness being the next to fall by the wayside.

    Today I started facing up to the fact that I cannot have a life and try for these ideals. I’ve tried for over twenty years and it is time to change the pattern. Sprog is twenty and beginning to carve a life of his own and I have to try and acknowledge I’ve been a good mother. Somebody told me that today – actually they said I was a brilliant mother – and it would be nice if I could process that and actually believe it – but I’m not there yet.

    So it was a HUGE coincidence to read your post. I hope I’ll make inroads into a more relaxed less self-blaming life in the future and I hope you do too. It is hard though. Only one way to get there – keep trying – that is one thing we are good at isn’t it? We’ve been doing it for years. X

  • http://www.elastamom.com Tiffany

    This is so true and something I think we all struggle with. Thanks for sharing!

  • http://www.aspieside.com aspieside

    Very true & we do all struggle. Here is my whole post on my struggles http://aspieside.com/2011/10/07/medications-for-mom/ It caused me anxiety! After accepting my own needs for help (meds!) I feel much more relaxed. We can’t be perfect. All we can do is try our best. And in our kid’s minds we are perfect :)

    But you forgot perfect hair, makeup clothes, matching accessaries etc for your description of “perfect mom” ;-)- Who has time for that??!? LOL

  • http://theinvisibledisability.com LoCo_Mommy

    Wait, were you at my house this past week? ;)

    Not only am I an overachieving Type A personality, I’m also an Executive Assistant in my, er, “real” job. My whole life, both professionally and personally, is structured around appointments and meetings. I plan events both at work and socially. My son, who is apparently VERY popular, has more parties and playdates than I ever did growing up.

    I end up having to dictate the household flow because otherwise, nothing would EVER happen in our house. Husband, God love him, pretty much leaves it to me to handle. He says I’m good at it and he, well, sucks talking to people. Sounds like a compliment but not really. LOL

    So I’m always on the go – and even when I get home, it’s not like I can automatically relax. As soon as I’m home, it’s time to catch up with the kids, get dinner ready, get ready for bed (since I have routines with both)…and then sometime after 8PM I have some time. By then I’m too exhausted to do much else than watch TV and surf the web.

    I try very hard to keep all the balls up in the air, so speak. And I try not to take it personally when I forget something, but it’s really hard. Like I failed at the great test for “Mom of the Year” (is there such a thing?)…I’m learning to let the little stuff go. So I empathize with you! We’ll get through it…

  • http://www.CarolinaHeartStrings.com Carolina HeartStrings

    what is your child’s special needs? Mine is autistic. There is no perfect – specail needs or not. Patience is key for certain and thinking “outside the box”…. It’s a challenge for sure.

    • http://katscafe.org Katrina

      Hey there – I have three pretty amazing guys who all share the diagnosis of Axenfeld-Rieger Syndrome … which is a rare genetic disorder … and are also on the Autistic spectrum, have Epilepsy, and have many other assorted diagnoses among them, including everything from Cerebral Palsy to Dyslexia

      We lead one of those full and busy kind of lives here! Thanks so much for asking – and I totally agree with you – there really is no such things as perfection – special needs or not!

  • http://jontybabe.blogspot.com jontybabe

    You are so right. There is no such thing as a perfect parent but as special needs parents we think we should be beyond perfect. We are human and we have limitations. Be proud of the great things we do and don’t focus on what we don’t or can’t. Great post. x

  • http://myaspielife.posterous.com Doug Sparling

    I think it’s a paradox. You can only be the perfect parent by being imperfect. My wife is also a mum of three special needs guys, and with me, four (but I’m pretty low maintenance). I think being a special needs mum gives you special super powers. If all the world were so “imperfect,” it would be a much better place.

  • http://www.entrepreneursuccessprinciples.com/ Edmund Lee

    Lovely post Katrina. Thanks for opening up and coming from the heart. I can definitely feel the energy and sincerity through the words in your post.

  • http://littlemammasaid.blogspot.com/ Emma

    Well said Doug!
    Another very honest post Kat. God my house is a pigsty, I feel like I am neglecting my other son, I can barely keep on top of all the phonecalls and chasing ups and appointments, can’t manage to fit in all the flaming physio and exercises to improve Little H’s vision in the space of 24 hours and have been known to regularly forget his tube feeds! At least the older one asks when he is hungry!
    But like the previous comments have said. We love our kids and that is the most important thing of all. They wont remember the cobwebs or the creases in their clothes (I hope) :)

  • Vincent

    Perfection is not what we can achieve but we do try to reach it. Every one of us make mistakes, parents too, which makes life interesting and worth living. If everything is perfect then life would be boring. Just my opinion.

  • http://www.funny-facts-finder.com/funny-food-facts/ Matt Clarke

    Kat, I think you are a very inspiring person. The truth is that ‘perfect’ is impossible to achieve. Unless you are talking about something quantifiable, like a test score, perfection is completely subjective. Everyone’s view of perfect is different, and from my perspective you are a lot closer to perfect than most people I know. Thanks for sharing and just continue to be who you are.

  • http://1000giftideas.com/ Naxysch

    Katrina my dear I think you are a perfect parent! And yes a perfect wife! You are doing a really great job here, You handle them and you share your experiences with us which really makes other parents know that there are others who feel just the way they do! That really is a great support and relief! Truly, hats off to you!

  • http://www.lipstickandplaydates.com Lipstick and Playdates

    I am chronically tired and have perpetual brain fog. I can be tough on myself, but fact is I’m doing the job of 3 parents. It helps to know there are others out there in the same boat.

    • http://katscafe.org Katrina Moody

      It helps me as well, so I’m so glad that it found resonance with you too {hugs}