Special Needs Motherhood Is Lonely Work

I have amazing friends.

I do.

They are generous and encouraging. They are willing to overlook how many times I ignore their text messages.

They make me food, pour me tea, and offer me wine.

They are the difference between me completely losing it, and me just partially losing it.

They love me, well.

And the truth is, they have absolutely no idea what it’s like to raise a child with special needs.

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It has become increasingly clear that my youngest son has some neurological differences, beyond dyslexia and processing delays. My days have been a haze of  his increased anxiety, meltdowns, mania, and depression.

The more he struggles, the more I realize I have been clinging to the idea that I will still have a “normal” experience of motherhood. I have been reassuring myself for years, that no matter how tough things are with my oldest son, I still will have the chance to experience motherhood the way my friends do, because of my youngest.

That I will have a child who easily fits in and freely socializes.

That I will have a child who eats food without anxiety.

That I will have a child, joyful to be with friends, easily enjoying the day.

But more and more, this is just simply not my reality.

I am mourning the loss of motherhood as I hoped it might be. 

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Special Needs Motherhood Is Lonely Work

Please know, I realize this sounds a bit narcissistic.

I realize it’s horribly selfish to be whining about my lack of a “normal motherhood” when my sweet son is struggling just to make it through the day right now.

I realize that normal never really is anyway, no matter what the brain function.

But in all honesty, I see my friends’ children on Facebook, and feel a pang of envy.

I leave every girls’ night out, a little bitter that they all are going home to children that are already asleep, and mine will not only still be up, but struggling, out of routine and anxious due to my short absence.

I feel a deep, almost visceral sense of loneliness, when I hear other moms talking about their children – their struggles, their education, their crushes, their room decor, their hobbies, their sports, their birthday parties, their lives.

The older my children get, the more apparent the differences become.

And the older my children get, the more lonely I become.

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My children are both struggling, and often in pain right now. It is inescapable. 

On my worst days, my heart feels so broken I can barely breathe.

On my best days, my heart feels so broken I can barely breathe.

The only difference between the two, my best and my worst day, is how I respond to the loneliness that inherently comes with the circumstances I am facing.

At my worst, I am focused on all the differences, on all the seemingly unfair, on all the things I might be able to do to “fix” our lives.

At my best, I am encouraged by all of you. I am aware that no matter what it may feel like, I am not alone in this. I am aware that so many of us tell the same stories, feel the same feelings, and pray the same prayers.

Being a mother of children with special needs can be lonely work, to be sure.

But it is also inspiring work.

It is work that matters.

It allows me to celebrate progress with abandon, because every single victory matters.

It gratefully brings me closer to moms, that I will likely never meet in person, but nod knowingly with every day online.

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Motherhood brings out the absolute worst in me.

Motherhood also brings out the best in me.

It’s true for all of us I think.

We are more alike than we are different, us moms.

And this is the antidote to my loneliness. Because we all hurt when our children hurt. We all dream of a bright future for our little ones.

We all hope.

We all struggle.

We all want to give up sometimes.

We all love with everything we’ve got.

Special needs or not, a mom is a mom.

I am grateful to be in such good company.

14 thoughts on “Special Needs Motherhood Is Lonely Work

  1. One of the hardest things for me personally is that Ethan is not just blind, he’s autistic. He’s not just autistic, he’s blind. So all those great groups out there for blind or autistic parents don’t help. Each disability feeds the other one and makes it that much more difficult. All those “autistic kids are visual learners and make pictures in their brains” articles don’t apply. No one is quite sure what to say to me and I definitely feel like we’re the ugly stepchild of the disability family.

    And most of my friends do have NT kids. However, because of his school he met a girl who became a friend. They wanted to hang out (share the same space, but I’ll take it!) so the mom and I got them together. We had SO MUCH in common and it was such an amazing relief to talk to someone who GOT IT. We only see each other a few times a year, but each of us comes away from it totally recharged. Maybe find an fellow-autism-mom IRL?

  2. Thank you Shawna for putting words to an experience I share but have not talked about. I long for birthday parties, cheering on at sports games and going to school performances. And I shudder when my younger son occasionally shows similar behaviors to his older brother because he is meant to be my “easy” child. It is not selfish or narcissistic to reflect on your own experience – if we do not meet at least some of our emotional needs, how can we possibly meet the needs of our children?

  3. This post captures what I feel. It is so hard and the psychologist even pointed out that the older our son gets — he’s 14 — that the differences will get only more pronounced. I see other moms posting their kids’ stuff on FB and there’s just a pit in my stomach. When I post stuff about my daughter when she wins academic awards and does well in her athletic pursuits, I feel like I’m ignoring him (I do post stuff about him when I can…obviously not the panic attack he had at the mall today, but when he shows how big his heart is when he does special things for our pets) I also feel bad when other moms talk about their kids when they get together; I feel like I’m on the outside looking in and frankly no one wants to hear about it.

  4. Other than being a dad as opposed to a mom, this pretty well sums it up to a “t”. Before Kristin, I felt like a sinking ship, weighed down by impromptu school visits to put out the fires and constant battles at home that i could barely understand why they were even happening. The quiet time I did have was spent trying to solve the puzzle that is my son, desperately trying to find the piece I clearly must have missed…trying to come up with a way to make it up to my younger boy that was far too often told “sorry buddy, I have to deal with this”.

    Single parents of challenged kids trudge a road wrought with fear, confusion, frustration, jealousy and loneliness but there is also indescribable triumph when all the pieces come together for even just a moment and we see our amazing little people “get it” (whatever that it may be). It reminds us that they will succeed and it is through their successes that we finally see ours.

    Thank you to all of you that have tried to prop me up on this journey and carry me when i could no longer carry myself. Most of all, thank you Kristin for walking into this often intimidating world of mine and offering to not carry me but to share the struggles, failures, victories and hope with me.

  5. “I leave every girls’ night out, a little bitter that they all are going home to children that are already asleep, and mine will not only still be uP”. My heart bleeds for you, since I haven’t had a night out since before I was pregnant (that is the reality of special needs parenting, not this pity party)

  6. Yes, this is so spot on. I’m a single mom, I struggle when I see my dear friends posting about their daughters helping in the kitchen, or doing cute crafts, because these things are too much of a struggle to be done in the limited time and patience I have on weekends and holidays.

  7. Well- right there with you. I feel like I have lost all my friends- it’s so hard to keep up with people when you’re dealing with meltdowns or preventing them. Friends often don’t understand when we need to cancel or never plan get togethers… Hang in there – I love your writing

  8. This was a beautiful! It really helped me…I especially loved how you said that motherhood brings out the best and the worst in you….so true for every mom…but for us special needs moms, the best WINS…we are fighters!

    Thank you for helping me see that what I experienced when my son (now 17, Aspergers/ADHD was diagnosed at age 8) was normal…I had to mourn that dream of what I thought my life would be…but it’s actually turning out better in ways I never imagined. I have 3 special needs kids God bless you!

  9. Dear Shawna, I have been where you are and wanted to just say I’m raising my coffee mug to you this morning! What I (eventually) discovered is that it’s ok to grieve my expectations of motherhood that aren’t to be. Only when I own the grief and let myself feel it can I fully embrace the beauty – and it sounds like you’re doing just that. Bless you and your family.

  10. Thank you for your vulnerability. Many of us identify with your feelings and yet, because of the isolation resulting from our circumstances, grieve silently. Though parenting a special needs child is unique, all moms long for the same basic desires for our kids. Thanks for the reminder.

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