Raising a Child with Special Needs: What About Your Needs?

Stressed mother on phone with son nearbyIf you have a child with special needs, a typical day might begin something like this:

You wake up before your alarm goes off. Your mind is racing. You can’t stop thinking about the most recent troubling report that you received from your child’s teacher or doctor. Diagnoses, prognoses, and possible treatments swirl endlessly in your mind. As you sift through the details, you begin to feel a deep sadness and worry for the child who you love so deeply. You find yourself feeling like no one understands what you are going through. Maybe you’re even jealous of friends whose children don’t have such struggles—why your child? Suddenly, sadness, worry, and jealousy give way to an incredible burst of anger at the lack of adequate, affordable services available to your child. As the anger begins to subside, a sense of helplessness, and even paralysis, takes hold as you wonder how you will ever be able to help your child unlock the incredible potential you see in him or her.

Days that begin like this are also often consumed by shuttling children to and from appointments with doctors and therapists, conferences with teachers, maddening phone calls with health insurers who are concerned only about their bottom lines, and disappointing meetings with education officials who don’t have the knowledge, funding, or resources to help children like yours. As the day comes to an end, you realize that, once again, you’ve gotten none of your own work done. You’ve used the last of your vacation days for the year and it’s only March. And speaking of missed work, you wonder yet again where you’re going to come up with the money to get your child the help he or she needs. Exhaustion and ever-present worry settle back in, and your thoughts begin to race again.

If this sounds painfully familiar, questions about you and your needs probably feel decidedly less familiar.

It may feel a little selfish to think about your own needs in light of the daily struggles your child faces, but you might find it useful to reframe that thought—tending to your own needs might actually allow you to give more of yourself to your child. If you lose yourself in the mix, you will feel overwhelmed, spread too thin, isolated, and maybe even hopeless. This is not a good position from which to advocate and fight for your child, or to enjoy spending quality time with him or her. On the other hand, if you manage to carve out a little time here and there to take care of yourself, you may be better able to handle it when things get really tough. Clichéd as it may be, if you take better care of yourself, you can take better care of your child.

So, how can you put yourself back on your priority list? First, start small. If you’ve been neglecting your physical and mental health for a number of years, then planning to go to the gym daily, cutting out all culinary indulgences, and taking regular long weekends away at a spa is probably not reasonable or possible. Instead, read up on simple meditations and breathing techniques and practice them when you can—maybe in the waiting room while your child is at an appointment. Next time you wake up to racing thoughts, implement the meditation and/or breathing technique you found most useful.

Not into meditation? Try something more concrete—commit to getting a little exercise. Once or twice a week while on a lunch break, or while your child is at school, take a brisk walk, bike ride, or squeeze in a quick trip to the gym. Swap out one burger or fast-food lunch for something healthier that you still enjoy. These ideas may seem at once miniscule and monumental—too small to create any kind of real change, but too big to implement. Just give it a try. You might find the opposite to be true. One small change might be easier than you imagine, and it might also feel much better than you imagine. You might even be inspired to look for another small change to make.

Emotional support is also critical. You probably do a fantastic job of making sure your child has access to all of the emotional support he or she needs, but again, you may not think much about your own need for support. Consider looking for a support group for parents of children with special needs. Even the most well-meaning parents of typically developing children may not be able to provide the kind of support you need. They might not fully understand the scope of your child’s challenges, or they might find it too awkward to talk with you about something this big without being able to offer some practical help. Having a dedicated time and space to be with other parents who walk in your shoes can therefore be deeply healing.

In addition to the emotional support that a support group can provide, you can also get some practical ideas and suggestions from other parents. If a support group seems like too much, consider striking up a conversation with another parent in the waiting room of your child’s doctor or therapist—you might find you have a lot in common and decide to go to coffee together. Finding your own therapist may also be beneficial; therapy can provide a valuable source of support, help you develop coping strategies, and allow you to carve out a weekly hour dedicated to you and your needs.

Finally, don’t forget fun with other adults. If you are able, splurge for a babysitter and go out with your partner and/or friends. If you can’t afford it, try to work out a babysitting exchange with another parent. Maintaining adult relationships that are not with your child’s teachers and service providers is an important part of maintaining your sense of self. Regardless of whether you are single, married, or in a relationship, you deserve to have relationships in which you aren’t a caretaker. You deserve to have relationships in which your needs are just as important as anyone else’s.

All children need their parents, but your child probably has more needs than most, and he or she may need a great deal from you for a very long time. This is all the more reason to make sure you prioritize your well-being. Nurture yourself. The road ahead may be long and uncertain, but if you take care of yourself, you’ll be better able to manage the unexpected twists and turns, and you’ll find it easier to enjoy the many sweet moments with your very special child in between.

© Copyright 2013 GoodTherapy.org. All rights reserved. Permission to publish granted by Sarah Noel, MS, LMHC, therapist in Brooklyn, New York

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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  • bradley

    bradley

    February 27th, 2013 at 11:16 AM

    Oh my gosh talk about parents whose needs usually go unmet and that is those of families with special needs children. These are parents who for the most part are so tireless and so giving of their time for someone else that they never have or take the time to make their own needs a priority and typically go day after day with never a word of thanks or praise. I am spo proud of these parents and respect them so much that I wish that more families would take them in their arms and tell them just how much they mean to their children that they are caring for. Their needs go unnoticed by pretty much everyone, so if you know someone who has to live with this and magae a home like this day after day, cook them a meal, lend them a hand, and tell them from time to time just how special they are to care for another so selflessly.

  • Lori Oliver

    Lori Oliver

    October 2nd, 2018 at 3:15 AM

    Well said. You could be my hero. I raise a 28 year old who has Cerebral Palsy. I’ve raised her by myself with next to no support from family or friends. How I wish they felt like you.

  • seth

    seth

    February 27th, 2013 at 12:53 PM

    sister has a child with aspergers. and although its not as bad as it seems she does struggle with it. it makes me sad to see how in the pursuit of making things better for the child she often ignores her own needs and even goes to the extent of harming herself indirectly – by not getting enough sleep or eating at the right times.

    that she was a carefree young woman who preferred to live life on her own terms before doesn’t help. going to have a conversation with her about this and will share this article too. just hope she takes the advice and starts to look after herself better.

  • Scott

    Scott

    February 27th, 2013 at 11:29 PM

    I would guess there is a flip side to this over working from parents of special needs kids. Yes they devote all their time and energy to the child and the needs but do you think this could cause a feeling of not having done enough for themselves down the line? That could then bring in a sense of oh-I-gave-you-too-much towards the child!

  • Cassie

    Cassie

    August 12th, 2017 at 9:38 PM

    I’ve been raising a I smeared poop for 8 years all over my face down to my toes kind of kid alone for 8 years. She’s 16 now, Now I just get spit on and told to go f myself while she has broken 8 televisions, 15 tablets and I stopped counting cell phones. Why do I buy that? Because if she doesn’t get a receipt at the gas station or I accidently used the black charger instead of the white one, or God forbid her toes hurt because she actually pulled all her toenails out, there is major drama. Yet I’m supposed to be OK? And so is she. Yet, we aren’t.

  • Cassie

    Cassie

    August 12th, 2017 at 9:40 PM

    Sorry, it’s just the joy of Smith-Magenis Syndrome and it turning me into a a freaking lunatic.

  • Tristan

    Tristan

    February 28th, 2013 at 3:53 AM

    The sad thing is that most people who are caring for a special needs child don’t even see what they want and need as important anymore. They only see what the child needs.

  • Kristen

    Kristen

    February 28th, 2013 at 9:17 PM

    I definitely need to work on maintaining ‘adult’ relationships …

  • maribel

    maribel

    February 28th, 2013 at 10:50 PM

    having lived with a sibling with special needs for many years I can attest to the fact that when something such as this ocupies your mind it can be very hard to concentrate or even give energy to any other facet of your life…its like you are being pulled in one direction and so everything else seems to be moving away from you…while it can take some time to get used to devoting energy to other areas could actually help the problem area too…have seen this work and is something that I would encourage people to do.

  • pamela g

    pamela g

    March 1st, 2013 at 3:57 AM

    As the mom of an autistic son, I cannot tell you the heroes that I have met in my life who constantly amaze me with their strength and tenacity. I get up some days and wonder how I am going to make it, and then I think about some of these other families that I know and the feats that they accomplish each day without and ounce of selfishness and I know that I too can do this for me and my family. I don’t feel like I am having to give up any of my own needs because taking care of my son is like taking care of myself by extension.

  • gary

    gary

    March 1st, 2013 at 11:37 PM

    not going to lie here.it feels terrible to be me at times with all the stress of looking after the needs of my child.but the only thing that keeps me going is my love for him and the thought that no parenting is easy or simple it is only levels of difficulty that is different.and I am only growing stronger by coping with an enhanced difficulty in my life.stay strong all.

  • Maranda

    Maranda

    March 2nd, 2013 at 9:38 AM

    It would help if society as a whole seemed a little more concern about special needs kids and their own unique needs, but somehow this is something that most of us choose to not to see.

  • eagle

    eagle

    March 5th, 2013 at 7:31 AM

    No Scott, the feeling is always about the child. I have made it through my childhood and early adult life successfully. My child on the other hand is struggling. It is about the children. I wish I could take off some times and be alone for a day or two. I can’t. I have a disabled spouse too.

  • Sarah Noel, MS, LMHC

    Sarah Noel, MS, LMHC

    March 6th, 2013 at 9:01 PM

    Thanks for reading and commenting. It is so nice to see the support and concern that is expressed here. @Seth, your sister is lucky to have a loving, concerned sibling like you. @Kristen, Maribel, Pamela G, Gary, and all of the other parents and loved ones of special needs children, you have my utmost admiration and respect.

  • julie

    julie

    June 15th, 2013 at 1:11 AM

    I understand the need as most parents like me. But telling us this kind of thing just adds more stress to ‘Oh my gosh I gotta do this too???’ And I promise you never have time. You know what never gets talked about? How many extended families have abandoned parents like me. Our sisters and brothers and our parents have run from us. THOSE are the people that need to hear things like this. They are some of the most unstable crayons in the box and cannot handle their own family when they need them most. Or direct this to people in the community who DONT have kids with special needs. Who could reach out to people like me who feel invisible.

  • Linda Haydens Mom

    Linda Haydens Mom

    June 15th, 2013 at 3:49 AM

    Babysitting is a huge obstacle and growing larger by the day. Finding anyone willing to care for a ten year old in adult diapers and down syndrome has never been easy and a mom with a touch of social anxiety can only hear Polite/sympathetic versions “no I don’t think my daughter is up for that” before one stops asking. Respite care or access to willing qualified people would have helped me and my family have some normalcy. It has taken 10 years to look in the mirror and see that I needed a haircut and a kayak. They have booth helped me get my groove back :)

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