Special Needs Parent Guilt: Let’s Talk About It

by Andi SlighJul 30, 2014How-Tos, Special Needs Parenting12 comments

Special needs parent guilt is an all too familiar companion to many moms & dads. Guest blogger Andi Sligh has 6 ways to combat special needs parent guilt.

Andi Sligh from Bringing in the Sunshine is today’s guest blogger. She’s here to talk about a subject many of us fight daily: special needs parent guilt. She offers six tips for combating its whispers when they rears their ugly heads.

Special Needs Parent Guilt: Let’s Talk About It

Eleven years ago, when my daughter, Sarah Kate, was born ten weeks premature, I blamed myself. A year later, when she was diagnosed with spastic diplegia cerebral palsy, I blamed myself. Six years after that, when my son, Nathan, was born with Down syndrome, I blamed myself.

I’m not blaming myself anymore.

It’s not because I don’t think I could have done things differently, and it’s not because I’ve found someone else to blame. Things could have gone differently, resulting in different outcomes, but they didn’t, and our life as a family with two children with special needs (and no typical ones) is enough.

Assigning blame is fruitless.

All of those times that I wished I’d done this or that (or not done this thing or another) accomplished only one thing: pain and anguish for me, the mother of these wonderful, perfect children. A mom in pain is a mom who can’t give her best to her children.

Those fleeting moments when I wondered if the ob/gyn on call should have done something differently, or when I contemplated whether or not those brand-new full-body scanners at the airport were safe when I was (unknowingly) a few days pregnant? A waste of energy and more pain and anguish for me.

Don’t feel guilty about causing your child’s disability.

In today’s medically advanced world, we live with a false sense of security, especially when we are young(ish) adults who’ve never faced tragedy or incurable illness. We believe that if we do the right things we’ll be okay, and our kids will be okay. It’s not always true, and often there’s no reason why.

Speaking of doing the right things … you’re doing them.

The days when you work on the activities that the therapist recommended, and the days that you toss the worksheets aside and let your kid binge on TV or ice cream instead – you’re doing the right thing. The days you push your kid to do more, and the days when you let him slack off because you just can’t deal – you’re doing the right thing.

Don’t feel guilty about not being a 24/7/365 therapist.

Sarah Kate had major orthopedic surgery in the spring, and she still isn’t fully rehabbed. We are using an extensive home program as a supplement to her office therapy visits. One recent Sunday afternoon, we tried to get her to ride her bike. I went with her first, but capitulated when I saw fear and tears. A short while later, my husband – the “tough” one – tried again. He had only marginally more success.

After a few minutes, he came back inside and said something so simple yet so profound: “We need to let this go and have her work with the therapist instead. She just isn’t going to be able to do it for us.” I knew instantly that he was right. Our job as her parents is to guide and comfort her and catch her if she falls. Taking on the role of full-time therapists, as well, doesn’t always work.

If you’re feeling guilty today, stop.

Whatever you’re doing, and whatever you did, is okay. Take a deep breath and just love your child, and that will be enough.

How Do You Stop Special Needs Parent Guilt in Its Tracks?

Andi offers some excellent advice. But perhaps you’ve discovered some other ways to keep it at bay. Leave a comment if you do. You can also connect with Andi online to keep up with her family and their adventures.

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By Andi Sligh

Andi Sligh is an ordinary mom living an extraordinary life on the gulf coast of Alabama with a daughter with cerebral palsy, a son with Down syndrome, an adventurous husband, a wild Westie, a rescued Schnoodle, a camera, and a worn out pair of running shoes. She blogs it all at Bringing the Sunshine, tweets a little @AndiSligh and recently published There’s Sunshine Behind the Clouds: Surviving the Early Years as a Special Needs Mom, a free ebook for parents at the beginning of their special needs journey.

12 Comments

Andi at Bringing the Sunshine on August 9, 2014 at 2:36 pm

Thank you so much, everyone, for your great comments – it truly is so hard not to believe when you are a mom that maybe – just maybe – it is your fault. I think a tiny dose of that feeling gives moms the fuel to push on to make sure that our children get and do everything they should. Perhaps it’s just nature’s way of shaping us into “momma bears”. But as we all know, everything is intensified when you have a child with special needs, and instead of a tiny dose of fuel we get a heaping helping of guilt that’s not good for us.

Carolina – You can contact me through my blog at bringingthesunshine.com. I’m thrilled to hear from another CP/DS Combo Mom! 🙂

Carolyn – I’m probably what you would call “overbrained,” as well. I was always in the gifted program at school and became an engineer. My in-laws couldn’t blame me, though, because my husband was also gifted and an engineer. 😉 But in all seriousness, it is a shame how some families react to the news.
bridget on August 8, 2014 at 2:23 am

Wise tips. Letting go of blame and “what if” is very freeing. Definitely no time for it with all the demands placed on us. Thank you for sharing and snd sharing your beautiful kids with us.
colleen on August 7, 2014 at 10:51 pm

I have no “typical” children either. I have two daughters with mitochondrial disease and a son with autism. There have been many times I felt guilty. There were many times I thought well mito can be maternally inherited (there’s wasn’t….well found out both hubby and I are carries for a specific gene variant). The times I feel guilty are when I let other people’s ignorant thoughts in my mind…..like “well it wasn’t very smart of them to have another child, they should have known better”. I hurt that my children hurt….but I never feel guilty for actually giving birth to them.
Carolyn Gabriel on August 6, 2014 at 2:44 pm

My in-laws blamed me, said my son had DS because I was “overbrained”. People would look at me so compassionately. The speech started “it’s not from our side”. Years later I learned of this. Who cares! I went to see my 53 year old son at his group home. He wasn’t home. I left him a note. I asked how he was doing. Lady said HE IS PERFECT! I told her I KNEW THAT! And he is perfect (except for perhaps over eating). Strange how our insecurities catch us when we are vulnerable. I wondered at first if it was ‘my fault’ because I had Betty Davis eyes and she had a DD child. Later learned the child had been adopted! So, here I am. My son worked hard to accomplish what he has in life. I am still ‘overbrained’ (high IQ) which doesn’t do me a lot of good, because it’s SOCIAL QUOTIENT that enables us to get alog in the world. My son and I have high social quotients.

After about 50 years my sister asked ‘would you do it again?’ Unequivocally YES but it would have been nice to have some information (1960). What concerned me the most were the health concerns. My son is 54 in October.
Jolene on August 3, 2014 at 3:45 pm

Hi Tammi,

Hang in there mama! Sometimes our kids need a break from therapy to play like other kids. Is your daughter’s therapist able to come up with exercises disguised as play? Sometimes that works, too.

Jolene
Tammi on August 3, 2014 at 7:38 am

Crying as I read this !!! Most deffo how I’m feeling about now, my lil girl has gdd n suspected cp n simply doesn’t seem
To wanna do her excersises n standing x mayb it’s coz she’s gettin stronger n her own personality x but thank u for ur insight x
Jolene on August 2, 2014 at 3:47 pm

Grandkids are the best, aren’t they Laurie? Have a wonderful and tiring day with them!
Jolene on August 2, 2014 at 3:46 pm

Thank you, Carolina. To contact Andi, visit her blog at http://www.bringingthesunshine.com/. It sounds like the two of you have much in common.
Jolene on August 2, 2014 at 3:43 pm

Good for you, Miz Kip. Thanks for a peek into how you conquered guilt. You’ll be a better parent for it!
Miz Kp on August 1, 2014 at 6:08 am

Hi. Found you on Love that Max. I did feel that I did something to cause my son to have autism when he was first diagnosed but that guilt quickly went away as I became more educated about what autism is. Although there have been many causes spoken of in the media I don’t blame myself anymore. Great tips and thanks for sharing.
Carolina Fernández on July 31, 2014 at 6:17 pm

Hello! I was very impresed by your history sínce my son juan was born 10 years ago at 26 weeks and eh has a left hemiparesy and five years later my lovely daughther Carol was born with ds!!!!!!!

Hoy many times i thought things like The one You just taludes about. Should be very happy to get in contact with you,

Best
Laurie Mitchell on July 31, 2014 at 9:59 am

My first grandchild has special needs. She is the light of my life along with my three other grandchildren. The word “Special” truly describes her. She is special in so many ways, most especially her boundless love for her family. Thank you for sharing your blog. I will be seeing three of my grandchildren on Saturday for a week. I will leave very tired, but happy and grateful to have these threee precious children in my life.