Revisiting Self-Care for the Special-Needs Parent

child-screaming-with-stressed-motherFor those parents out there who may not know what it’s like during a day in the life of a special-needs parent, humor me for a moment while I describe an actual scenario:

The school year has started, and the release note from the psychiatrist has not yet arrived to authorize the school to administer that second dosage of medication that will help your child focus and concentrate in the afternoon. You know he will fall apart without his “brain vitamin.” Your HMO doesn’t allow faxes to the school, so it has to be sent by snail mail to your house for you to hand-deliver to the school staff. To top that off, there has been a budget cut for teachers’ aides in your son’s school district, so you know there will be one less aide in your son’s special-needs class. That means a specific reading program cannot be implemented for his dyslexia, unless his teacher completely rearranges her schedule to accommodate his one-on-one needs and the school district provides support during this time. You reluctantly act as an intermediary between his teacher, who is taxed to capacity, and the school administration, sensing you have stepped on a political landmine that you want no part of. Every school year brings new challenges to advocate for your son’s individualized education program to be upheld.

Furthermore, your son can’t find his socks, which you asked him to put on 20 minutes ago (about five times). He hasn’t touched his breakfast. You know you have a long drive after school to drive your son to vision therapy so he can work on his visual processing. You will be stuck in traffic on the way home. You look at your do-to list; it is a mile long. On top of the list is finding a team sport that your child can participate in without being too overwhelmed given his neurological challenges with visual processing, attention-deficit hyperactivity, and, according to some “experts,” mild autism. You don’t really agree with the last diagnosis, but because your son has sensory processing issues, he has strands of what could look like autism. You shiver as you recall the judgmental parents who stared at your son at the last soccer enrollment, wondering why he couldn’t follow through with multiple-step auditory commands. You scratch your head in disbelief, appalled at the ignorance in some communities and the lack of appreciation of diversity. You must call the tutor who teaches the expensive multisensory reading and get that set up, at least until the school gets its act together to implement the program during the school day. You know your son will be exhausted today, and tutoring is the last thing he will be able to do. His brain will have been pushed to its limit by school pick-up time. Then you start to worry about your older middle schooler’s homework load. He may be a “typically developing” child, but he has entered adolescence and you are worried he feels like he isn’t getting enough attention with all of his little brother’s activities.

You recall the movie Finding Nemo and picture the scene where Dory and Marlin are happily exploring the deep ocean where little light punches through the depths, and, unbeknownst to them, an anglerfish suddenly presents a mesmerizing glow and gifts the fish with its deceptive little barb. Marlin and Dory are transfixed and feeling transported to another world—until the hungry anglerfish projects its mouth, filled with serrated teeth, and begins to take chase. Marlin announces, “Happy moment gone.” This is how summer has transitioned to the beginning of the school year for you.

Sounds like a choose-your-own-adventure novel gone awry? Welcome to the world of the special-needs parent. It’s hard enough being a parent to a “typically developing” youngster, but factor in the element of “special needs” and you have chronically stressed-out parents. It is imperative that all parents practice self-care, but it is even more essential for special-needs parents.

Don’t get me wrong: As a parent of two (one of which has special-needs challenges) and as a psychotherapist, I know that parenthood can be completely enriching and truly the most wonderful thing since sliced bread. But I also know that far too often, many parents do not discuss the myths and expectations of parenthood and how these standards are so very high that they are, simply put, unrealistic. When a parent is faced with the added demands of raising a special-needs child in particular, the added burden of medical, financial, and educational worry is profound. Many special-needs parents are so taxed to capacity, just going through the motions of survival, that self-care becomes the last item on the list of things to do.

I have found in my practice—and in my life—that the following self-care strategies have been life-saving and essential for reducing stress and finding some semblance of balance on this journey called special-needs parenting. Parents of “typical” children should find some of these strategies helpful as well.

  1. Befriend other parents who have children with special-needs challenges. They get it. Keep authentic friendships with those who may not fully understand the ins/outs of special-needs parenting but who are supportive and who can lend a helping hand.
  2. Educate family and friends on the specifics on your child’s challenges and discuss how they can be supportive, nonjudgmental, and how they can offer tangible practical help (i.e., trade off play dates for babysitting so you can go on a date with your partner). Talk about invisible issues (i.e. ADHD, autism, learning disabilities, etc.) and how they impact your child so that friends and family can be prepared to understand why your child may not be able to handle the bright florescent lights in Target without having a meltdown. No, it’s not your lack of parenting.
  3. Practice ongoing deep breathing, yoga, or exercise of any kind that lifts endorphins and puts you in contact with mental wellness and social support. With the chronic levels of cortisol and adrenaline in your system with chronic stress, your body needs relief and discharging of these harmful chemicals. Likewise, stay on top of nutritional supplementation. Get a physical. Make sure you have a good multivitamin with omega-3 fish oil to protect brain health. Be sure you are not vitamin deficient (very common).
  4. Take time for you. Yes, may be stretched to the limit with work (if you haven’t had to quit your job to care full time for your special-needs child), shuttling your child to appointments, tending to the needs of others in your family, and the usual ins and outs of life (laundry, food preparation, etc.). However, it is vital that you make yourself a priority. You must schedule self-care time or it just won’t happen. This can look simply like an hour where no one is bothering you, curled up reading the latest gossip magazine. Or it could be as decadent as a facial or massage. Having a friend or relative watch your kid(s) for an hour or more is heaven-sent.
  5. Take care of good “sleep hygiene.” Yes, that’s the latest clinical term for getting a good night’s rest. If you are getting less than five consecutive hours of sleep (approximately a full sleep cycle), your brain is being depleted in serotonin, the neurotransmitter that regulates mood. See your doctor or naturopath for interventions, including melatonin supplementation.
  6. Journal, paint, or dance the stress out. Studies show that creative expression helps enhance well-being and reduce stress. If you don’t have someone to help you with the kids during that hour of “me time,” have them join you. Invite them to join you in practicing with a stress-relief yoga video or child yoga video with animal poses (assuming they are physically able; otherwise, they can observe mom/dad practicing self-care and learn through your example the importance of self-care for all family members).
  7. If you suspect you might be depressed or anxious, contact a skilled, licensed psychotherapist who can provide supportive therapy. Look into support groups for special-needs parents in your area. Reduce isolation.
  8. If it is feasible and safe, get a dog or cat. Pets reduce stress, lower blood pressure, and generally bring about unconditional love and family cohesion. I often wonder if it’s my family that rescued our rescue dog or if she rescued us. Pets add a whole dimension of unconditional acceptance and love, in addition to reducing stress (most of the time).
  9. Get in touch with nature. There is something so meditative about being surrounded by the beauty of creation. Do a walking meditation or hike in your neighborhood. If you can go to the coast, experience the ocean breezes and sensory comfort of air, sand, water, and wind. Whatever nature surrounds you, find comfort in the beauty of other living things. Likewise, tap into your spirituality and allow that to guide and comfort you. You might find this in nature, on a walk, or in a church, mosque, or synagogue. Wherever spirituality is for you, allow it into your life.
  10. Compartmentalize. Your to-do list is a mile long always. Just tackle one or two things per day, then reward yourself for any accomplishments. Without your advocacy, your child wouldn’t be the rock star he/she is. You are tireless in your endeavors. Reward yourself for being a rock star mama/papa. Know when to stop checking things off the list, lest you burn yourself out. Give yourself permission to watch those shows you recorded after the kids are asleep. You have earned it!
  11. Find the positive in the struggle. You would never wish pain and struggle upon your child or family. And yet there are many silver linings in the challenge of special-needs parenting. Generally, your family members are more likely to be compassionate, tolerant, embracing of diversity, authentic, mature, empathic, and wise beyond their years in unquantifiable ways. Focus on humor. Focus on the magnitude of love in your family. It is profound.
  12. Let people who don’t get it fall by the wayside. They will either be supportive and unconditionally there for you as a friend, or they won’t. Don’t frequent that supermarket in which the clerk glares at you disapprovingly because your child can’t hold it together in a long line and starts licking your arm because he needs sensory input. Trust me, no one is going to get it unless they have a child with sensory processing issues. Spend your time and energy wisely, and seek out services and businesses that are nonjudgmental and special-needs friendly (i.e., certain pediatric dentists work with special-needs children). There will always be ignorant people in the community who will be quick to blame you for your “lack of parenting ability” because you don’t know how to “control your child.” Those people don’t know that your child has some invisible neurological challenges which are not obvious on the surface. It gets easier to let it roll off your back with time.

I hope the above suggestions for self-care are helpful to you. As a mother and a psychotherapist, I must practice what I preach as well. Here’s to self-care!

© Copyright 2013 GoodTherapy.org. All rights reserved. Permission to publish granted by Andrea Schneider, LCSW, therapist in San Dimas, California

The preceding article was solely written by the author named above. Any views and opinions expressed are not necessarily shared by GoodTherapy.org. Questions or concerns about the preceding article can be directed to the author or posted as a comment below.

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  • Deb

    Deb

    September 3rd, 2013 at 3:41 AM

    This sounds loike good advice for almpst every parent out there, but especially for you as the parent of a special needs child.

    One of the most profound things that struck me is that as a parent I don’t pay too much attention to the kids that are around all the time, I don’t know all of their ;learning styles and I certainly don’t know all of their parents well. But in your case with a special needs child, I would think that this relationship would be a whole lot more critical, and that it is good for you to connect with those who have the same things going on at home and who know a little more about the things that you have to struggle with. I think that making those connections with families who also have special needs children could be the lifeline that many are searching for, for they are the voices that can give you advice, help you through those daily challenges and give you hope when you feel like there is none.

  • josie

    josie

    September 4th, 2013 at 3:53 AM

    I speak for many special needs parents when I say that they have to be wondering when they have the time to do this. When is there the time in their day to attend to their needs when so much of their time is spent taking care of the others in their lives?

  • Andrea Schneider

    Andrea Schneider

    September 6th, 2013 at 4:17 PM

    @Josie…that’s the point…parents all need to make time for self-care…or risk imploding :)

  • Linda

    Linda

    September 15th, 2013 at 10:32 AM

    #11 is my favorite! We can get so obsessed with the things we have to do that we forget that we have grown and changed and so has the rest of our family – and so much of that change is positive! I also find that in order to get the help our kids need, we have to play to the weakness, but there is so much positive that we don’t talk about since it would risk our child’s needed services, that we can forget about those silver linings. I love my kids, and I would give up those special needs if I could, but I can’t, so I am going to enjoy everything about them as often as I can!

  • Donna L

    Donna L

    August 24th, 2014 at 8:22 PM

    Wonderful post! I used to think that I “didn’t have the time” to take care of myself, exercise, eat right, or practice some sort of self care….but after FORCING myself to do it for a while, I realized that I couldn’t find the time because I was so dang exhausted from NOT practicing self care! It’s a vicious. You don’t take care of you because you don’t have the energy, and you don’t have the energy to take care of you because, well, you don’t take care of you….right?

    As a mom of five (three special needs), I started to get really, really sick. I ended up with a diagnosis of diabetes, fibromyalgia, arthritis, IBS, and all sorts of other things. I was taking 30-40 pills a day to keep up. I believe, it was because I let myself get so run down, that my body just gave up. And you know what, I couldn’t even take care of my kids properly by then. So, not taking care of yourself isn’t serving you OR your kids.

    I have two at home now (both special needs) and am raising a rambunctious 5 year old grandchild. I have taken better care of myself in the past 3 years than ever in my life….and I feel better now than ever in my life (at 50, I have more energy than I did in my 30s). And yes, sometimes things don’t get done, and sometimes other people have to pitch in, and I can’t work with the school or other organizations as much as I did before. But I was killing myself before.

    I hope parents can find some time to take care of themselves. Each and everyday….even just one small thing. Just pick on thing (like putting lotion on, every single day). That doesn’t take much time. Show yourself some love each day, and build on that <3

  • Kassandra

    Kassandra

    November 6th, 2014 at 4:38 PM

    Raising 3 children ( 2 special needs boys ) has been very challenging ! I’m the only advocate and my husband lives a different way ( denial? ) than I do! My body has completely broken down and my mental state too! People and family just don’t understand or they say they do! My strength will bring me back and I’ve been meditating and using healing stones ! And breathing! Everyday brings a new stressful challenge ! Even with help from a sitter, there’s really no escape ! It’s always on your mind ! I pray I can stay healthy so I can raise this beautiful family god has given me!

  • Tiffany

    Tiffany

    August 31st, 2015 at 6:23 PM

    I am a registered yoga instructor, currently in the Master’s in Science program at The University of North Texas. I am interested in staying a yoga and relaxation company for caregivers of special needs family members. What is do you all think of this idea? I am currently a case manager for 5 group homes and I think assisting the caregivers in relaxation and meditation, along with inner strength would be a great idea.

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