I Let Him In: When Depression Comes Knocking at a Special Needs Parent’s Door

doorknock

This was not an easy post to write.  It was even harder to hit the publish button.  But when I decided to put myself out there, I did it with the intention of letting others know they are not alone in their journeys.  This is one snapshot of mine.  

I’ve said before that depression is much like an old lover.  One you’ve successfully managed to get out the door – along with all of his things – and begin a new life.  A life in which laundry gets done, friends get visited, lists get checked off, balanced meals get cooked, and the things you enjoy get enjoyed.  But something or a lot of things happen.  Usually in succession and often involving sleep loss, grief, financial or marital stress, etc. — and, under the weight of exhaustion, your resolve weakens.  That’s when he comes looking for you.  Whispering in your ear.  Telling you all your efforts are futile.  Crooning the familiar songs he sang to you before.  Knock, knock, knocking at your door.  Until you open it and invite him to come inside — and his seduction is complete.  And the next morning –every morning you wake beside him– you know you knew better.  But now his clothes are in the closet, his toothbrush beside yours, and he is ingrained into your life once more.

If you read me, you may have noticed you haven’t been reading me much lately.  I’ve noticed too.  I’ve noticed lots of things.  When I do, I race off to WordPress and create a post, give it a title, and even jot down some of the words that are clamoring to be released. But is isn’t long before he begins whispering to me. This post will take a lot of time.  Of course, if you write it, you’ll likely infuriate someone and will feel the need to respond.  Which will just upset you more than you already are.  You’re tired.  Tomorrow –you’ll write it tomorrow.  Of course, I don’t.  It doesn’t get written.  Thoughts and emotions keep pounding, and everything just gets louder. From the dishes being unloaded to the dog’s incessant barking to my children — Bronwyn just being five and Callum being a verbal stimmer. It’s all so very loud.  And all I want is to sit on a porch overlooking the mountains on a cool early morning and hear…nothing.  Nothing but the wind blowing and perhaps a little rain or moving water.  No voices.  No screaming.  No phone ringing.  No cacophony of everything I need to take of.  To sleep.  To read.  To write.  To recharge.  Because I am simply depleted.  I attempt to get my head together and manage to accomplish a thing or two.  But my constant companion draws me back in to myself.  His incessant whispering for me to lighten my load and sit down for a spell.  To put it off for another day.  To pull the covers over my head and attempt to hold the world back.  Yes, he knows how to talk to me.

My heart aches.  My fears bully me.  And even my bones feel tired.

I’m starting to see the things I feared and knew were coming.  I see my sweet little boy, excited by the mere presence of other children — but oblivious to their activities and play.  He jumps, laughs, and flaps away — and has no understanding that he isn’t a part of it all.  Part of me is grateful he doesn’t yet understand– while the other part of me just hurts.  Everywhere we go, we take two cars.  There are few things that we can confidently plan as a family.  It’s too crowded, too bright, too large, too hot, too long.  Too everything. People not seeing the delightful child he really is hurts. His sister having an uneven share of our time and attention hurts.  The looks we get hurt.  His discomfort hurts the most.

Sometimes the view from this ride is beautiful.  Sometimes, it’s fun.  But right now it is making me sick.  And I just want so very badly to be let off.  I want the support of my father, my stepmother, and my grandmother.  I want them to tell me it will be okay.  But they’re dead.  And, every time I get on the highway or have a strange pain, I fear dying myself.  Not for me, but because who will take care of him?  Who will fight for him?  And how – how – do I ensure that his sweet sister will understand that I love her equally though I cannot give of myself to her equally?  Some days – or weeks – it’s too much.

And, in my darkest moments, I fear that I am not enough. That I’m doing this all wrong.  Making the wrong decisions.  Not doing enough.  Doing too much.

Yes, I have been to see my doctor.  I have taken antidepressants.  They helped marginally, but my hair started falling out (a truly unfortunate side effect for a depressed person if ever there was one.)  So the doctor and I are trying again with another antidepressant.  Trying because there is no other choice.  For the alternatives to managing this are unacceptable.  My babies need all of me, therefore depression can be allowed none of me.  There simply isn’t enough room for him in my house.  I’ve told him he must leave.  To pack his stuff and get out.  Good riddance and all that.  So far, he hasn’t budged and has turned into a squatter instead.

But I know something he doesn’t.  I know the unconditional love and trust of two children who depend on me.  I know the maternal bliss of snuggling against their sleeping forms in the wee hours of the night.  And I know that, in this battle between him and me, who I’m really fighting for.  In nature, whoever gets between a mother and her young is always at a disadvantage.  He’d do well to remember that.

“Now the standard cure for one who is sunk is to consider those in actual destitution or physical suffering—this is an all-weather beatitude for gloom in general and fairly salutary day-time advice for everyone. But at three o’clock in the morning, a forgotten package has the same tragic importance as a death sentence, and the cure doesn’t work—and in a real dark night of the soul it is always three o’clock in the morning, day after day.” 

― F. Scott Fitzgerald, The Crack-Up 

If you liked this post, you might also like:

Somebody’s Knockin’

Why I Won’t Be Getting Mother of the Year: Layers of Understanding

DIY Special Needs Enrichment, Therapy, and Play on Pinterest

DIY Special Needs Enrichment, Therapy, and Play on Pinterest


53 thoughts on “I Let Him In: When Depression Comes Knocking at a Special Needs Parent’s Door

  1. Lisa

    I get all of this. Kudos to you for speaking out,and for sharing your story. It is hard to kick that creep to the curb, but sounds like you’re taking all the right steps to do so. Hope the new meds work for you. ((Hugs))

  2. Sylvie

    You are brave, and honest and I admire your thoughtful and loving reflections about your children and your struggles with the journey. As a mum with a similar family composition but a little further down the road (both kiddos are almost at adulthood) I send you most heartfelt wishes for pockets of peace along the way. Take good care, for yourself, as much as you do your children. It will not stay this way…our one constant with our kiddos is change. All the best.

  3. Rachel Cotton

    This wont be a long post, but I totally get you on the hair, and not at all depressive. I think anyone wouldn’t like their hair falling out, and yes especially hard if you are already depressed. Love your profile pic, you have such shiny hair, when i was reading this post I wanted to stroke your lovely hair and tell you it will be ok. But I can’t and uh, it might be a bit weird… I’m a bit tactile for people 😉

    Thinking of you x

  4. Katie

    God bless you for writing your inner most thoughts and feelings because most of the circle (family and close friends) want to believe that you have it all together all the time. Isn’t it nice to lay in the bed once in a while and wallow? Moms of typical kids get to scream and cry so why can’t Moms of special needs kids get to take a pause and feel the pressure? Feel the bad and move towards to good because if we live for those happy,unexpected joys that our “littles” revel in that we didn’t plan, speculate, or research we find ourselves enjoying the simple things. Prayers and thoughts for you & your family…

  5. Alisha

    Hi. I read your blog sometimes, even though my three year old son isn’t autistic–he has a rare chromosomal disorder, is non-verbal, g-tube fed, global delay, the whole works, so he has some “autistic features” whatever that means, really. First of all, thank you for sharing your story with the world–you are articulate and honest and smart. I wish I had more time to respond to your last post (I’m in a class right now, so I should be doing work). I just want to tell you that you are not alone. I have struggled with depression since childhood, and meds, exercise and keeping busy does help. But in my darkest moments, I feel that I am so fundamentally flawed that my son’s chromosomal snafu is because of my own lack of worth. It is terribly unfair that you suffer from depression on top of caring for a child with special needs, when such a job requires endless patience and optimism. Please keep trying with the meds, and just know that there are others out there with you who understand.

  6. Heather

    Been there…thanks for sharing. We get up and keep doing what we are doing because we are the Moms and we love our kids! You are enough because you love both your kids and advocate for them. Wishing you peace and to see the joy in your kids eyes :)

  7. Cheryl

    I know exactly how you feel. He got in my door, too, and I’m the process of pushing him out. Like you, the majority of my support system passed away, leaving my husband and I with no respite care. We’ve been this way for 5 years now. It’s exhausting. Fortunately, I have an aunt who reminds me on a regular basis of all of the good things my parents would tell her about all I was doing for my son. She seems to know when I need to hear those words again. Replay the words of support from your father, step-mother, and grandmother over and over, for they are still true. On the last Mother’s Day with my dad, he told me I was the best mother ever. I can still hear his voice telling me those words, 5 years later. And they still work magic :) My best to you.

  8. Graham

    I, as a (now single) father of a very ‘happy flappy’ girl with Angelman Syndrome +ASD I felt every word, the guilt, anger at the hurts,and indescribable bliss. As you know sometimes we have all of these feelings at once. I agree and reflect Sylvie’s comments above and more power to your elbow for the effort and bravery it takes to write about how you/we feel.
    Love and Peace X

  9. Kathy R.

    You are not alone. Depression SUCKS, robs you of perspective and makes you feel unworthy. But you will make it! My depression is under control, most of the time, and my illness makes me more compassionate about the needs of those around me. May you find a new med that works, and find the energy to love yourself. Thank you for showing others that they are not alone either.

  10. Debbie

    such an incredible post – such courage to be so open. my heart aches for you and all the special Moms out there (and Dads). I try to tell my daughter I understand, I am here for you – but unless you walk in those shoes, you truly don’t understand. You can only help be a grounding force and a source of strength.

  11. Laura

    I have so been where you are right now. I can at least tell you, that from my experience, your daughter knows how much you love her. My son is 16 now, and although he is higher on spectrum than your little man, I had very serious worries when he was diagnosed at age 4. My daughter was only a few months old at the time. Would I be able to give her enough attention? How could she possibly be okay?

    But she is. She’s compassionate and kind, thoughtful and strong. I am unbelievably proud of her.

    I am also proud of my boy. He has worked so hard and overcome so much. He has a very hard row to hoe. He once told me, after he spent some time in a sensory classroom with some non-verbal children, that he thought he might be here to speak for the kids who can’t. Still makes me cry.
    Maybe he is and maybe he isn’t. But he is making his way. And so is she. And so am I.

  12. Lynne Pardi

    Beautifully articulated, Leigh, despite your obvious pain. I completely understand, and I’m praying for you.

  13. Terri

    Oh, honey, you are not alone. And you’re a little ahead of the game in that you know who he is. The first time he arrived at my house — after my first child was diagnosed but before my second child was diagnosed — he was unnamed and invisible, though insidious, for over a year. While diagnosing my second child, he came with such stealth that I contemplated packing it all in, divorcing my husband, and going to live the life of a wanderer in Europe. With help, I named him and started to give him his walking papers. He goes for awhile, but he hasn’t completely packed his bags. He likes to sneak in and open them not at 3 a.m. but at 8 a.m. after everyone has gone to work or school and. I’m. just. so. tired. I have better tools now than I did when my children were little and I just wanted to run my car into a tree — not to hurt any of us but just to maybe get me a little time in the hospital so that I could sleep.

    Do what you need to do to roust him; he has no business messing with you and, therefore, your precious babies. You are not alone.

  14. MarthaB

    I am one of the many mother’s of a special needs child that totally gets this. Early on I was given advice from another mother who had looked at places for her young special needs son to live. She decided that no matter how hard it was, her child would be best off with her and loved. No worker/ therapist can provide the unconditional love a parent has for their child.

    I also saw a quote that I have to remind myself of from time. “World’s OKest Mom.” While we wish we had perfect “normal” children and an easier life……it’s ok to do the best you can every day and just continue walking the journey one step at a time.

  15. Cathy K

    I get it. I know the ride (http://autismhomerescue.wordpress.com/2012/07/05/the-ride/) and the depression and the persistence and the exhaustion. And I just want you to know you are beautiful, you are brave, you are enough. A friend of mine with two on the spectrum once said, “Take a soft blanket, put it in the dryer, wrap up in it when you are feeling lonely or sad or scared.” It helped. So I’m sending a virtual blanket, a big hug & lots of prayers too. Thank you for sharing this today.

  16. Jackie Huffer

    Thank you for being vulnerable and allowing us all in. Your post couldn’t have come at a better time to help me put words to my feelings. You are awesome, and your babies are lucky to have you.

  17. Mama D

    You are brave to say aloud what so many of us just whisper. Both of your children know that you love them, and Bronwyn will come to understand (if she does not already) that the fact that Callum needs more of your attention does not mean that you love him more. And do take care of yourself, too…there’s a lot of truth in the old adage “If Mama ain’t happy, ain’t nobody happy.” Give yourself permission to be less than perfect, because we ALL are.

  18. Stephanie

    I can relate to this all to well. It is very brave of you to put this out there, it’s also very much appreciated.

  19. His mom

    Wow. You did it again. Read my mind. Kinda nice to know i am not alone… Even though i already knew that. Thanks

  20. Dixie Redmond

    Oh, Leigh, I get this. It is a tough season right now here, too, and the old black beast is sitting outside the door. I loved reading the comments here because I got some ideas for me (warm blanket straight out of the dryer). Sending you a warm blanket hug.

  21. Jessica

    Oh I get this, far too well and I’m so sorry you are going through it Leigh. I’m glad you decided to give your thoughts words and I think, unfortunately, so many moms will relate.

  22. Jan Velasquez

    Keep. On. Publishing. Hit that button, that only hits him in the face. It builds you up. And is someone, anyone takesw offence, there is the surest count that some one HAS READ what you wrote, took time to snark, took time to PUSH THE BUTTON. Perhaps they did a little thinking too along the way. Just don’t stop. keep on, keeping on. An inch, a foot , a yard it is all progress. Any forward momentum is NOT LOOSING GROUND. i AM CRONIC DEPRESSION. i WILL NOT STOP, i WILL NOT LOOSE GROUND. i WILL KEEP PUSHING BACK. I can not afford for that guy to make any headway. I will not let him be the winner over me. We will fight foreve, together, and not open the door to him again……even if there is ice cream and cookies involved. It will never be worth it. We both know that.

  23. Sandy Tilton

    Well said Leigh. I’m in the mountains now but surrounded by a lot of family. I love them, I am happy to see them but I just want a little quiet. Quiet and a nap.

  24. Allison

    You, my dear, are absolutely brilliant. You have reminded me of the need for self-care. If you lived here in Seattle, I would be taking you out for pedicures. For that matter, if you are ever in or near Seattle, look me up. My kiddos are now 12 (NT) and 15 (ASD) and all I can say is that the journey just keeps getting better!

  25. Bethany

    This is my first time reading your blog and this post is the exact message I have been avoiding posting on my own blog because I can’t bring myself to write it. I feel like it would be cathartic, and would help my friends and family to support me. I’m also sure it would help others who are in the same boat, as your post has touched me. But I haven’t screwed up the courage yet.

    I have a 4-year-old daughter with special needs. For the first 3 years of her life I didn’t even realize I was depressed, just thought parenthood was a heck of a lot harder than I expected. I’ve been on meds for a year and a half and they’re working, but once in a while, he sneaks back in, especially in the late afternoon if I’ve forgotten my pill in the morning. I sure hope you find meds that work for you, and alternate help as well. Exercise and gardening in the sunshine help me immensely.

    So I want to commend you on your courage in “coming out” about your depression. And I wish you the best in your fight.

  26. Liane

    I get this. Oh, do I get this. Please know you are not alone. Thank you for your courage and honesty. xo

  27. cd

    Your words could be my own words–I have walked this path too–for a very long time actually–finding a way to replenish yourself is critical, yet almost impossible to find time for. Draw strength from those around you–let the pain rise and fall as it needs to as you follow the path that is in front of you. Parenting is never easy–parenting with such unclear guidelines and answers is maddening! Yet, somehow we do it–one day at a time.
    Bronwyn will learn many valuable lessons from this journey as well–and she will likely be better because of it.

  28. Lisa

    Sending you all kinds of virtual love like hugs and understanding nods. You came up with a great metaphor for this stuff so you can look that old guy in the eye and say “I’m so good at life that I know exactly how to describe you and how you suck the life out of people.” Because you are, you know, “good at life.” It’s a phrase my 16-year-old uses a lot about people she admires (and if you get the “professional human” phrase from her than you know you’ve made it – yeah, don’t ask me to explain). Anyway, you are more amazing than you realize and I so get what you’ve written. So there you go, you are, for me anyway, at that “professional human” level. Thoughts & prayers your way, Leigh. Keep pressing on.

  29. Kristi

    At times I feel that my severely autistic daughter is “A Tortured Soul” and I want to give up on her and give all my attention to her nuerotypical sister. I get feedback, results, emotion, growth and love from her. Afraid to take antidepressants that it could make it worse.

  30. April Till

    Your post, “Somebody’s Knockin'” inspired me to find the strength to come clean about the depression that comes with the territory a few weeks ago. I am still wrangling with the restructure that comes with the territory of trying to mesh the depressive side with my normal nature. When I get my perspective ready, that ‘ll be my next post. Thank you for sharing because there is solidarity in knowing that there are others like me fighting the same battle. If you want to hear from a fellow mom in the same boat, here is my own talk about depression on my little journal: http://higgle-e-piggledy.blogspot.com/2013/06/stress-one-eyed-demon-his-friend-fifty.html.

  31. Naturally Educated

    I enjoyed reading this and can relate to some of your struggles. I have three children. My oldest has Down syndrome and sensory issues. There are definitely some hard days. So many extra things to consider and do in daily life. Hoping you get a few good days soon!

  32. Deborah

    As much as I hate someone else feeling the same emotions I do it also makes me feel better to know I’m not alone. Thank you for having the courage to share your feelings, this is how I feel just about everyday and I just take it one day at a time, being grateful for what I have :)

  33. Cindi

    Thank-you for sharing this. I am right there with you on this one right now. Struggling to overcome it for the same reasons too. My kids.

    ((hugs)) you are in my heart and my prayers

  34. Jim Hooker

    Leigh, I met you & your family thru my daughter after hearing her brag about her special friend Leigh. Now I have always admired her choice of friends & after meeting you it only confirmed this impression. I have known your adversary, Mr D. & whipped his butt & am betting that you will do the same. Raising children can be tough under the best of conditions, but doing it with a child with special needs must be a real challenge. It takes a special person to do it. God must have seen something really special in you to have chosen you to be Callum’s mother. God bless you & your family.

  35. Sherry

    Thanks for sharing your feelings. All of them! Happy, anxious, depressed, annoyed, excited, etc. One thing I can’t stand is when people make things that are very difficult sound so rosy! You are real, and remind me of that whenever you write. Share when you are able and want to. Your reality is your family. We can wait!

  36. Samantha Evins

    Keep taking deep breaths, keep trying to find the right medication to help you kick “him” back out the door, keep reminding yourself that you really are an incredible mother. Lots of prayers and love all the way from Australia x

  37. Anni

    Thank you for writing this. It helps me when, after I put the kids down for the night, I give in to tears for as long as possible, then I wash my face, find something fun to do like cook something yummy or watch HGTV and watch home makeovers etc…it’s no cure or substitute for the right meds, but it holds me over for another day.

  38. Fuzzy Cabbage

    You are so brave to share your innermost feelings with the world and to allow your vulnerabilities to show. There are a lot of people out there who can relate to the feelings you are experiencing, and you have given them comfort by letting them know they are not alone. And it is more than evident that you love and care for your children dearly. They are lucky to have you. Sending positive energy your way and hoping things lighten up for you soon.

  39. Amanda Daybyday

    Yes!!! For me, the fear of dying plagues me. Not so much for myself. But for my kids. The responsibility for them weighs heavily on me. All the time. It keeps me up at night.

  40. Teresa

    He has knocked on my door many a time. MANY a time. I’ve been in the hospital and lost all functioning, it got so bad. Depression robs you of everything if it gets too far. I’m so thankful that I’m on the other side of it now because I spent more than a year under that dark cloud and it sucked the life out of me. I totally get not wanting to write during that time–I did the same thing. Went on a hiatus. And then I wrote about it, just like you have here. Stay strong and brave, like you are here. There are so many people who suffer from depression and don’t think anyone else understands it. Your words will mean something to someone.

  41. Sandra

    You are so brave for writing & publishing this!
    i pray that depression will leave you & your family alone, get out once & for all.

  42. Belenda

    Thank you for sharing this Leigh, maybe not enough to help ease your depression but it does help this parent. I struggle with this every single day. It has not been an easy road the past 10 years, taking care of parents in failing health (now deceased,) the birth of my son Aidan during this time and then his eventually diagnosis with Asperger’s and a husband who had went through a number of surgeries and his ensuing depression. There have been numerous days (months) that I felt like I am stuck in the whirlpool of a drain emptying out of a sink. I have tried numerous antidepressants, talk therapy. After several years of trial and error my doctor and I seem to have found a regement that seems to keep my depression manageable. It isn’t an easy road and I comment you for sharing your struggle with us. Hang in there and keep trying, you know exactly what keeps you going and motivates you to fight your way through the darkness.

  43. MrsC

    Thank you for sharing this. I am struck by how, even in your pain, you express the insidiousness of it so well. Bear in mind that just because “he” took advantage of you when your guard was down, that doesn’t mean he will win the war.

    Thinking of you.

  44. Katie O

    So nice to know we’re not alone.
    You described our struggle beautifully.
    I am the mother of three, oldest has Autism, youngest is hypotonic at 2, doesn’t speak or walk yet.
    Everyday is a struggle and the outlook isn’t very promising most of the time, but it’s critical to focus on the positive- the progress, the developments that you thought you’d never get to reach, how much worse others in your same shoes may have it-
    The progress often occurs so slowly, or subtly that it goes unnoticed. But I find it comforting to take pause and note how much life has changed from just 6 months ago, etc.
    My son has grown tremendously.
    My daughter crawls and babbles and laughs. 6 months ago, that was not the case.
    We all get stuck in the rut of how much this sucks and how dire the prognosis seems.
    It’s healthy to acknowledge the predicament we find ourselves in but didn’t volunteer for, but then we must shake it off, and focus on what’s really important and what really feeds our souls, and that is the job of loving our kids “the mostest.”

  45. Aron Smith

    It takes a lot of guts to fight against autism and help your child lead a normal life. Thanks a ton for sharing this inspiring story.

    As a father of a 5 year old autistic boy, I can understand the pain and struggle every parent goes through everyday. But it is the struggle we go through and our love for our child, that makes them very successful in their life.

  46. Casey

    Thanks for sharing. Even though I know it isn’t my fault, and depression runs rampant in my family ( especially the women), sometimes I feel so much shame. It’s hard to admit, even to myself, that I need help again. I am very independent, so I feel like I’m failing everyone when I need help. Why do I need medication to be a good mom, or a good wife? Why can’t I be the best me, on my own? Thank you for sharing with us, and putting it into words.

  47. Cheyenne

    My, this was inspiring. I wanted to comment and let you know that I’m currently writing a play about autism, (I’m a senior in high school), and I’m going around asking moms for stories and words of advice for the play. Although these words are your own and I don’t plan on using them in my play, you’re still helping me to tell my story. Although medical definitions tell you something about autism, they’re merely one-layered and lack the humanity that stories like yours have. So I wanted to thank you for helping me in my creation of the mother character, who is just as important as the child himself. If I could ask one thing, would you mind helping in one small aspect of my play? I’m including a scene at the end that uses the names of real mothers that I’ve met through blogs and online, (with their permission of course), and a single word that they’d use to describe either autism itself, (from their own or their child’s perspective), or one word to describe their child. It’s an artsy approach that I wanted to include to illustrate the realness of these situations, regardless of the fact that the rest of the play was a made up story with made up characters, developed to tell a story. I thank you so much for your hope and for your bravery. I’ll remember you as I write my play and need motivation to make someone proud. Stay strong.

Comments are closed.