Hand to Hold's Official Blog: Written by Parents for Parents

Taking Care of YOU with a Special Needs Child

It’s 5am. Tears well in my eyes as I fill the tub, holding a squirming, poop-covered toddler. I can’t believe this has been happening daily for a month now. What if he never outgrows this phase? How am I supposed to get through the day if I’m already falling apart? No matter how hard I try, it seems like we’re constantly taking two steps forward and three steps back. I’m such a failure. I need help. But everyone expects me to be the strong one – I have to be the strong one. I should be able to handle this on my own. I can’t look at Seth and not cry. Can he see it in my eyes? Does he know how I feel right now? Can he tell how raw resentment boils through my blood as I curse the universe for being so unfair to him? Great – now I feel even more guilty. I should be grateful we’ve come this far. He doesn’t know any better. Why can’t I just be a better mom? A good mom would never think like this…. 

From over my shoulder I hear “Take a break – What can I do to help?”, as my husband taps me out of the situation as if we were in a wrestling ring. I go out onto the front porch and cry. I cry for my baby. I cry for how our lives “should have been”. I cry because I have no clue what the future holds. But then I remember that I’m doing all I can. When the day is done my son is safe; he’s thriving; and most importantly, he’s loved.

A year ago I would have told my husband I didn’t need any help – that I could handle it. I’d wash our little man, get him dressed, and then find an activity for him to do while I bounced between steaming the carpets and bleaching the walls. This would have been the scenario I started my day with, and it would have sent me into a downward spiral. Depression would take over and guilt would set in. And then I’d get angry. Really angry. Angry with myself, angry with my son, angry with my husband; angry that everything I’ve tried has failed.

I used to think I could do it all on crazy-daymy own. I thought I could be the perfect “Pinterest mom”; finding creative hand-crafted activities for my son that would keep him intellectually stimulated while I used my homemade eco-friendly cleansers to keep a spotless home. I would cook everything from scratch and be the perfect wife to my amazing husband. In my perfect world, we’d make it to every appointment on time, always pristinely dressed and at some point, our doctors would say all of my son’s symptoms were in my head. I refused to ask for help. I thought admitting I wasn’t perfect was a sign of weakness.

Then it happened: I went to hug my son and he cringed. HE CRINGED. And I completely fell apart. I was so stressed out from running around, stretching myself in so many directions that even my 3-year-old autistic son walked on eggshells around me. I could feel my husband slipping away from me and my life felt like it was on the verge of shattering. It felt like we were just going through the motions, surviving from one day to the next. None of us was living a life of pure love and excitement for what the next day had to offer. My burden was all consuming. I felt crushed by doctors, specialists, medications, special diets, therapists, evaluations, family, holidays; not to mention the regular household necessities like grocery shopping, cleaning, cooking, etc. I felt like there were never enough hours in the day to get it all done. It wasn’t until a friend sat me down and convinced me that if I didn’t take care of myself, I couldn’t take care of anyone else. In that broken moment, I was determined to reclaim my life. But HOW?

ADMIT IT – you’re not perfect. And I’ll tell you a secret – nobody else is either. You can’t do everything and please everyone one hundred percent of the time. There’s not a concrete answer for every problem and you know what? That’s okay.

It’s ok to admit you need help. To a friend, a family member, a co-worker, an online support group, a doctor or even your pet. Talk to your partner about how you feel and why. They can’t read your mind and they’ll never know what’s going on if you don’t tell them. It’s ok to be vulnerable. Be honest. Speak the truth – even if your voice shakes. Life with a special needs child can leave you feeling devastatingly isolated. You need to know there is an abundance of support out there; even though, at times, it feels like your world is completely separate from the one spinning around you. There IS someone out there who will listen. And there IS someone out there who understands. 

Playing with Seth

YOU TIME – Here’s the part where I’m “supposed” to tell you to set an hour aside each day to spend alone, finding your chi and relaxing. I think we all know the truth by now and most days that’s just not going to happen. But what you CAN do is set an hour aside every day to be with your child. I know what you’re thinking “But I’m with my kid all day – every day”. But this is different. Every day at 10am, I enter my son’s world. His crazy, little, quirky world. I leave our problems at the door and give him everything I have to offer. I am not trying to analyze, I am not trying to “fix”, and I am not trying to teach. Sometimes he doesn’t want to play with me, so I watch him. I sit for an hour and watch him march to the beat of his own drum. It’s cathartic. It’s fun. And you’re creating memories with your little one that you will never forget. If you change the way you look at things, the things you look at change.

SIMPLE PLEASURES– Find something that makes you happy and go with it. For me, it’s coffee. Instead of buying shoes, or collecting purses, my main vice is grabbing a cup of Starbucks coffee on the way to the therapy or doctor appointments. It is something I look forward to and it is just for me, I don’t have to share my little piece of heaven.Little Comforts

Some of the best sleep I have is after I journal. Writing down emotions is the greatest form of therapy you can ever have. And guess what? The only cost is a piece of paper and a pen. Write anything. Two-words or two thousand. A lot of the time I don’t realize what is truly bothering me until I read what I’ve poured out onto a piece of paper. And there’s no need to keep it. I toss plenty of mine into the trash and the weight of those untapped emotions seem to go with it.

FORGIVE – Free yourself of guilt. Forgive yourself. Remember that knowing your limits is NOT the same as failure. You need to know that tomorrow is a new day. That you are not alone. That it’s ok to be sad and it’s ok to cry. You are only one person. A person with emotions, passions, and limits. A person who needs to be rested, fed and healthy to be able to care for anybody else.

Cristal Grogan About Cristal Grogan

Cristal Grogan (MD) is the mother of Seth, who was born at 29 weeks weighing 2lbs 4oz due to severe preeclampsia, HELLP, and IUGR. As a military wife, Cristal and her husband were living in southern Spain at the time. Seth’s NICU stay was complicated as he battled NEC, ROP, IVH, PDA, Sepsis and PVL, but Seth defied all odds. He is now a happy and healthy 3 year old avid reader living with Autism and SPD. After navigating through the NICU life in a foreign country, amidst a language barrier and lacking proper resources or support system, Cristal swore to become involved in the preemie community to make sure no other parent was left in the same desperate situation. Currently, she is the Administrative Assistant for Preemie Parent Alliance and social media volunteer for It’s a Preemie Thing. In her personal blog, she describes the daily life of a military family with a special needs child.

Comments

  1. Thanks, Cristal. It’s a struggle. But I know I need to be gentle with myself. (And my kiddo needs it too.)

  2. AWESOME article, Cristal! Can’t wait to share it with others. I love the idea of setting aside time in the day to be with your kids, because it’s true some days can just fly by without any real, slow, quality interactions. And I am totally with you on the Starbucks – simple pleasure that makes my day!!
    Thanks for this!

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