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The thing about moms of special kids…

7 Feb

Here’s the thing – t doesn’t matter if your child has autism, or Down Syndrome, or Sherlock Syndrome (as in our case) – every mom of a child with special needs has her moments.  When the cape is on fire, the balls she’s trying to juggle get dropped, and the horrible ugly truth comes out.

I know, we’re not supposed to show these sides.  We’re angels, superwomen, amazing.  We’re so much more patient and calm – I mean, you see us be patient and calm All. The. Time.  We seem to face all the challenges in a way that others – those without someone special in their life – couldn’t possibly ever imagine dealing with, mere mortal that they are.

Here’s the thing –

We’re humans too.  We’re mortal.  We say bad words, in front of our kids.  We yell stuff like “Dammit child!” as our special little kiddo sits in a puddle of milk, smearing themselves with honey, or pees on the carpet – again, or is chewing up a twenty dollar bill, or whatever gem they decided to try out that day.

We’re not perfect.  We have bad moments.

And yet, somehow, we’re expected to be above all that.

If we’re pissed off about something that happened to our child in school, we’re not allowed to publically vent about it.  That would be Wrong.  That could affect how the school treats our child.

If our child is throwing a tantrum in public, we’re not allowed to even look perturbed, or else we’ll hear the whispers of “Oh that poor child, why is her mother SO MEAN?”

We’re told we’re the “experts” on our child – until we meet with a school.  Then we’re told that we must do things their way, because they know better.  That is, until something goes wrong and they start grilling us with what might be causing the behavior.  Or we meet with a doctor, who implies that somehow, we’re just imagining things, our child is fine.  Until two years later, when you finally find a doctor who will actually treat you like an intelligent person and doesn’t gaslight you and states “Why yes, your child is this way, having these problems.”

We spent so much of our time trying to balance life out – school life, home life, our life, kids lives – and it’s impressive to watch the juggling routine – until we end up with too many things to juggle and they all fall down – then suddenly, we’re open to any and all criticisms.

We’re damned if we do, damned if we don’t.  We can’t complain, then we’re ungrateful.  We can’t question authorities, because then we’re being uppity.  We can’t show that we’re stressed because we might then be a bad parent.  We can’t ask for more help because then we’re being unreasonably demanding.

We can’t win.

And then one day, we lose our cool.  Usually, this is preceded by a child’s tantrum, screaming, getting thwacked in the face yet again, a meltdown in the middle of a busy store, with everyone staring.

We crack.

We cry, we vent to those we can.  Those few safe people who get it.  Sometimes, we crack enough that we share our frustrations with the world – or at least Facebook.  Only to have it bite us in the ass.

“You can’t say that!!!!”

Why not?

Why can’t we say we’re tired of things?  Why can’t we complain when we think our child is not getting what she deserves?  Why can’t we have a moment to stomp our feet and say “It’s not fair!”

“You can’t say that!”

No, we can’t.  Because if we complain, and there is fallout, our child is the one to suffer.

So we take on that suffering for our child.  For our family.  We cry privately, sigh, dry our tears and find our brave stoic patient faces again.

The thing is – that with everything else going on in our lives, it sometimes becomes too much.  But we have to keep doing that.  Because the thing is – we have no other choice.

The thing is, we do all this, put up with all of that, because we love our kids so very much.  We know the obstacles they face, the confusion they deal with, the struggles they have.  We know that many people in the world will never accept them.  That there will be people who should be taking care of them and they will slack off.  We know that we’re the only person fighting for them.  We know that our child needs us so very desperately, and we can’t tell them “Sorry, it’s not worth the hassle.”

So we take it all in, make it ours.  When they are in pain, we’re in pain.  When they’re being mistreated, we’re being mistreated.  When they don’t sleep, God knows we don’t sleep.  When they’re unhappy, our hearts break.  In a way, they become a part of us, our shadows, always there, by our side.

The thing is, their life is our life.

And that is a little crazy-making.

So allow us our vents, our outbursts, our moments of anger, our times when we’re not angelically patient, the times our capes slip off and we don’t handle things with grace and humor, but with curse words.  Loud curse words.

The thing is, we’ve earned those moments.  By God, we have earned them.

 

 

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30 Responses to “The thing about moms of special kids…”

  1. Terri Weiss (@maple_fan) February 7, 2013 at 5:41 pm #

    Awesome, honest post. Vent on when you feel the need just like EVERY OTHER PARENT DOES, and thank goodness you have this blog.

  2. megsutton0629 February 7, 2013 at 5:45 pm #

    Thank you for putting everything I’ve been feeling the past few weeks into words. ❤

  3. Anne Liptak February 7, 2013 at 5:51 pm #

    agreed! we can’t always be supermom…

  4. Sharon Hoover Weidemann February 7, 2013 at 5:57 pm #

    Love it. Truth. I’m right with you.
    Sharon

  5. Wendy Carroll February 7, 2013 at 6:08 pm #

    Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you! Thank you!

  6. walkingrunningstumbling February 7, 2013 at 6:20 pm #

    Reblogged this on Walking Running Stumbling and commented:
    An excellent post about when special needs parents burn out occasionally. I can’t put into words how much I can relate to this post.

  7. Renee Anne February 7, 2013 at 6:38 pm #

    OMG yes! Why is it okay for every other parent to vent but not parents of children with special needs? Personally, I think parents of children with special needs need even more time to vent and scream and be angry because the problems can be so much more complicated and complex.

  8. Lyn Fattorini February 7, 2013 at 7:29 pm #

    Thank you. You have validated many of my thoughts. I see other mothers of children with special needs, who appear to be coping fabulously, which means I hide my stress and ‘inadequacies’ from even them. I have an extremely boisterous 7yo son with Down syndrome and hearing issues, who is a real challenge to handle in public. It has really hindered my ability to take both of my young boys out together. I’ll print out your post to remind me when needed that I’m ‘normal’, and my vent/meltdown/tears are only a ‘normal’ reaction to an ‘abnormal’ life. Thank you again.

  9. Theo Madeley February 7, 2013 at 7:52 pm #

    Amen.

  10. Beyond X and Y February 7, 2013 at 8:02 pm #

    Good for you now go and have a glass of wine and a hot bath and breathe. You deserve it.

  11. Adrienne February 7, 2013 at 9:12 pm #

    We HAVE earned those moments, it IS hard. I hate being called a saint, an angel, a hero, whatever. I’m not. I’m an ordinary woman and mom. Utterly, completely ordinary. I’m great at some stuff, and terrible at some stuff, and at most stuff, I’m competent, just like almost every other parent. I take my kid to therapy instead of soccer, and things are hard, and if I want to piss and moan, well, it probably prevents me from throwing more coffee cups than I otherwise would!

  12. kimmiej7k February 7, 2013 at 9:21 pm #

    Amen! I’ve learned there are few people I can truly vent to without fear of judgement or being told ‘my (completely average, normal) child does the exact same thing…I know how you feel’ when they clearly do not.

  13. babazoobee February 7, 2013 at 10:04 pm #

    yes.
    Thank you.

  14. Beth February 7, 2013 at 10:44 pm #

    We all thank you! What more can I say? So many people say “oh, you’re so patient. You must be a saint.” And all I can think of is” you should’ve heard me the other day….”

  15. Marie February 7, 2013 at 10:46 pm #

    Thank you so much for your honesty, I have 2 special needs grandchildren and I have driven special needs children on my School Bus for many years.You all deserve to Vent, Cry, and Meltdown,(swearing is even aloud)….You are human too, with the Biggest Hearts, All those people who comment don’t have a clue of what you deal with 24/7 God Bless all of you because you are Angels…

  16. charlie February 7, 2013 at 11:51 pm #

    I would give anything to be there to give you a big hug and a break. You don’t even know me, but my heart goes out to you. You have my utmost respect and admiration. Having been blessed with a granddaughter with special needs, I have a realistic idea of just how difficult it is to meet all of the challenges you do every day. Please speak to us on this blog however you choose. And continue to speak up in the defense of your child’s best interest. Remember, the words a person says to you, or the way they treat you, is a reflection of their character, NOT YOUR VALUE. So spew out your frustration to those of us who care…and regain your strength to face another day…of being human.

  17. Jessica February 8, 2013 at 12:06 am #

    It’s really a shame that you are assumed to be blessed with overwordly patience with a special needs child. Whereas society allows you to reach a place when you just feel like handing your child off to just about anyone (a friend a while ago said “children traded for lawn mover, anything is of interest” Then you knew that the children were being more than a handful). Here you can apply to become a – and there’s no applicable translation other than supporting family – for a weekend a month or so you take in a child with special needs to give the family a break.
    If I could I’d come to your home and pitch in, too and I agree with venting, allowing yourself to vent. It’s really not fair for anyone to expect that having a child with special needs is a walk in the park. .

  18. Betz February 8, 2013 at 4:12 am #

    Amen!

  19. User February 8, 2013 at 8:30 am #

    This must be shared on FB, so i shared it. Must read for parents. Thank you Phoebs!

  20. Millie Hill (Hannah's sister in law) February 8, 2013 at 8:37 am #

    Phoebe, I thought of you as I tried really, really hard to speak patiently and thoughtfully with my students and child yesterday. 🙂 You write so beautifully, thank you.

  21. Jo-Anne Ward February 8, 2013 at 10:05 am #

    Oh great: NOW you tell the rest of us you are mortal, merely human. What’s the excuse for parents of regular children who stumble when parenting has moments of insanity ?

    • phoebz4 February 8, 2013 at 10:51 am #

      That even so-called “normal” children can test our patience and drive us along the Cliffs of Insanity. That you’re human and mortal and have moments too. Because even the normalish ones can make our eyes cross and head ache. Especially when they’re 3…or 13…or 16…

  22. Becky Dean Lehto February 8, 2013 at 10:16 am #

    The best post I have read about being the mom of a special needs child EVER!

  23. Amy SIlverstein February 9, 2013 at 1:42 pm #

    Amen.

  24. lespriing February 11, 2013 at 12:48 am #

    Thanks for writing this! From mom to 8, three of them who have Down syndrome, thanks.

  25. eclark61393 February 11, 2013 at 5:24 pm #

    I am so thrilled that I read this post, I am not a mother of any children at all but I still appreciated your post. Going into special education I always get the comment of “good luck”, and to me its hard to accept. Yes i know it will be hard, just like you have proven above, but in the end it is all worth it. I am so excited to help those who can not always help themselves, and show them that they too should have dreams. I love the end of your post, because after studying special education for a bit now you realize you do need time alone, you do need a break, you do need to vent….and that is totally okay!

  26. lipstickandplaydates February 17, 2013 at 7:23 am #

    So agree. We have one of hardest–but most rewarding–jobs on the planet.

  27. Peggy February 23, 2013 at 9:43 pm #

    I don’t have a special needs child and feel like this sometimes. I can’t imagine your stress! Thanks for sharing

  28. Kylie March 4, 2013 at 6:37 pm #

    I’m hearing you, Phoebe! *hug* I also feel like you’re talking to me. I have a special needs child (autism) and I’m struggling to cope with anything of late. I’ve hit meltdown/burn out mode, I’m tired and stressed, but as you and I both know, we just have to keep going no matter how hard and seemingly impossible that is. I vent, I cry (far more than not – every day), I swear… I’m human (the “super woman” cape is well and truly sitting in a crumpled pile somewhere at the moment). One day last week I swore in front of my 2 youngest kids and one of them said “Mum, can you please stop swearing”. I felt like I’d been slapped in the face. I felt ashamed of myself and promptly burst into tears. I’m getting teary again now just writing that. But I’m doing the best I can with what I have right now and that’s all I can do.

    Thank you for writing such an honest post, Phoebe. 🙂

  29. Anna | decibelsofhope May 6, 2013 at 10:51 am #

    I love the honesty and the sincerity of this post…It’s nice to know I don’t have to get into the shower to cry…You rock, Phoebe!
    …i have a deaf daughter by the way…Thanks for an honest to goodness post!

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