Some challenges are hard to write about because they expose the raw we carry inside. But sometimes we have to talk about what it is like parenting in the trenches — whatever that means for you — because what I am writing here is about you, the parent, and how you are dealing with the extra needs in your family.
Parenting kids with high needs affects everyone in the family. Whether it’s a child with a disability, with mental health issues, or with trauma (or a combination of those), the reality is that at some point — and as hard as it is to admit — there might come a time when mama needs help.
It is so easy to focus on what our children need, to allow a schedule to become dictated by their therapists, specialists, or counselors. As parents we do everything we can to meet their needs, sometimes even at our own expense.
Now let me pause for a moment and acknowledge there are many special needs parents out there who do not feel they live with extra needs, or they feel their kids with disabilities are no different than their typical kids; these words might not be for those parents. But this is for the parents out there who feel wrecked, who feel like they can barely go on, who wish that someone out there cared enough and had the courage to enter into their pain, those parents who have many times locked themselves in the bathroom and sobbed.
Parenting children with high needs can be so incredibly hard and painfully lonely.
My middle daughter not only has cerebral palsy, but like many other adopted children, she lives with trauma from spending the first four years of her life in a Ukrainian orphanage. She is not the only one living with the trauma, it affects everyone in the family. We have surrounded her with love, affirmation, and support, yet so often I’ve felt incredibly inadequate and have struggled to pull myself together as challenges come our way. Nothing has broken me more than parenting a child from a hard place.
And there came a time when she was really struggling emotionally, and we were all gasping for hope. Hope that things would get better tomorrow, yet tomorrows seemed to offer no reprieve. And one day my oldest daughter said, “I feel like our family is falling apart!” And that statement was all it took for me to break down, sobbing, and realizing I needed help, because I felt so broken. So very broken.
I was not living, I was merely surviving.I could not keep living like this, my family could not keep living like this.
Then one day as I talked to one of her therapists over the phone she said, “I see trauma symptoms in you too, I was wondering if you would be open to doing neurofeedback, the tension you are living with is not helping you or your daughter.”
Just the day before I’d told my husband I felt like I had post traumatic stress disorder (PTSD) and perhaps I needed to see a counselor. That call confirmed I needed help.
So I want to talk to you, my fellow parent who feels wrecked, it is okay to ask for help.
There was a recent study done (September 2014) that looked at the mental health of parents of children with a “special health care need.” These parents are those who identified themselves as having a child with a “chronic disease or disability” or “emotional problems.” The results of the study were as follows:
“Cross-sectional analyses indicated that parents of a child with special care needs reported poorer self-rated mental health, greater depressive symptoms, and more restrictions in instrumental activities of daily living (IADL). Parents of a child with special health care needs had greater increases in depressive symptoms over time and greater declines in instrumental activities of daily living than parents of typically developing children. Perceived control was a robust predictor of all health outcomes over time.”
And I think we need to start talking about this. This is a big deal!
What happens in our home — the stress, the extra needs, the lack of sleep, the limited support — it affects us.
We are more likely to struggle with depression, anxiety, and poor mental health. So what are we going to do about it? We do whatever it takes to care for our kids, but will we do whatever it takes to take care of us? Our kids need us.
So friend, pick up the phone and make an appointment to see a counselor. I’ve been there, and seeing a therapist, even if only a few times, does a lot to my heart. And especially if you feel like you do not have close friends that are willing or able to walk this journey with you, get a counselor! It is so important to have someone to talk to. You are worth it!
Pick up the phone and make an appointment with your doctor. Get on meds if necessary. I’ve been there, it is humbling, but it can make such a difference. For a while my anxiety was becoming debilitating and I had to ask for help. There is no shame in battling your own mental health issues, and it is so important to have a clear head as you parent your kids. Friend, you are worth it!
Talk to friends and family about needing help. Sometimes help comes from the most unexpected places. You are worth it!
Find something that gives you life. Whatever that is, make time for you. You need time for yourself, you really do. Please do not feel guilty about a girl’s night out, do not feel guilty if you enjoy time away from your kids, it is okay. Go, have fun. You are worth it!
And I want you to know I am praying for you, you are not alone, I know what it is like to feel wrecked.
And don’t forget that taking care of us is the best thing we can do for our kids.
Your kids need a mama ready to face the world and it’s challenges, and sometimes mama needs help to get there. It’s okay. You are worth it!
Editor’s note: Listen to the podcast on Mental Health Issues in Parents of Kids With Disabilities
Special Needs Parents, Are You Surviving?
I created a guide with 13 practical ways to help you find peace in the midst of chaos, opt in to make sure you get a copy of this freebie!
This is sooo what I needed to hear from another “wrecked” person. After 8 years of dealing with a beautiful, troubled, chronically ill child I feel like I have reached a breaking point. I see my family suffering because of it. Life is so hard sometimes.
Stacey, praying for you now. And yes, ask for help, YOU ARE WORTH IT!
We are in way over our heads at my house after 7 years of trying to find solutions and continually implementing new strategies. It’s been 7 years of trying to help my stepson, but instead — he has not felt any improvement and his issues have had a landside effect on the rest of the family. The siblings are suffering, my husband is suffering and I am suffering. I guess my question is: how do you even find the time to seek counseling for yourself? Between all of his appointments, and then family therapy to deal with him, homework, housework, etc. I don’t think I have 10 minutes leftover for individual therapy. It’s not a good situaiton.
thank you.
You are welcome.
Beautifully written and soooo true for me! This is definitely my biggest struggle. Thanks for writing about an issue that we don’t discuss nearly enough.
Jennifer we don’t, and I think when it comes to our own mental health, we fear the stigma, or we want to believe we will be okay, that it’s not “too bad” but our emotional stability really matters, it matters for us, and it definitely matters for our kids because they need a mama that is not merely surviving.
Thank you for writing from your heart!
I have recently started reading your blog posts.
The first one I read, I cried because it was as if you were writing from my heart!
And I just read this one sitting at my work desk…
And cried…because…you get it…boy do you get it….
Thank you that even in the midst of and in spite of, all the challenges you are facing, you choose to reach out your hand to write and encourage all us Mamas…that need help too.
Praying for you all,
Andrea
Thank you Andrea, we all need to know we are not alone, that it is not “just us” and especially to be reminded that there is HOPE and that we can do something about taking care of us.
This didn’t just make me tear up…it had me crying, hard tears…this past year I have said to my husband so many times, “I’m SO tired of simply surviving! I want to just be able to live and enjoy life- instead of simply surviving” Not all days are bad- it’s just hard. Thank you. I’m glad I follow you…
I’m glad you are here too, you are not alone!
spot on! Anxiety runs high in families without special needs. Now that the three older boys are on their own and only the special needs kids remain the loneliness is sometimes overwhelming! Somedays are better than others! Spring Break has been hard just trying to be patient that many days in a row, but we have made it until Friday–just a few more days to go! God is faithful–his word is truth! These are two things I KNOW!
Sheila yes! Summer break is hard too.
Our daughter didn’t sleep through the night- not even once- until she was 5 years old. Five years of unbroken sleep is hard on anyone, definitely took its toll… Found out at age 8 that she has an extremely rare genetic disorder that’s causing her special needs. I have two other kids to care for as well, and my husband is gone Monday-Friday, so I often feel very alone and broken. I know I need help on some dark days but have no time- I’m lucky to get a shower before work.
You are not alone! Praying for you, that you can find resources to help (respite programs, a friend, a supportive church family).
So thankful I came across your post. Just recently our support group took a caregivers test on our own stress and brokenness. Our family has had too many of those rages in the can than I care to speak of and I can feel the pain especially the little one. We have been there too. Almost broke up our family. We now both see a counsellor separately and are working on dealing with our own stress and finding ways to take care of us.
Jenn, thank you for sharing, really, it is so important we talk about this, that we remove the stigma, and make it okay to ask for help.
Thank you so much for your wise words. I had this discussion yesterday at work when people were complaining trying me to do their work they had no time to relax and I slipped for the first time not biting it back that they had nothing to complain about. They replied it was my choice to have children. I said yes, but I didn’t choose to have a severely disabled child, I didn’t choose not to have slepta full night in years, I did not choose my marriage breaking under the strain of constant appointments and fights for my son’s rights.
Thank you for being honest and speaking up for all of us.
Thanx for helping with this. I myself struggled with this and it is still an ungoing journey. I have a lot of friends with special children that has been running this race for over twenty years and I have learned a lot from them. Speaking to someone helps and someone that has gone through it so much more. Taking it day for day and moment for moment. And its ok if you dont make it or perfected it today. Tomorrow is a fresh new start. Dont be so hard on yourself. The best gift you can give your family is to forgive yourself and love yourself. To all our special mommies.
Thank You for sharing! I’m patiently awaiting my first appointment with a Counsler and I feel that it is way over due! My daughter is 10 years old! #TheStruggleIsReal
Praying for you Heather, I am a big fan of counseling!:)
Thank-you for writing this. I’m a stay at home mother of five (four under four), two (twins) have spastic quadriplegic cerebral palsy and I homeschool my oldest. Never did a counselor even come to mind until now. It truly is a very lonely existence most times, but I am definitely looking into someone to talk to. Thank you again.
Thank you! After 18 years, I am learning to take care of me too. Still hard and the guilt is sometimes unbearable, but taking it step by step. Blessings to you and your family too!
Thank you for saying this. No one is our advocate.
Great blog.
Do you know if your child was exposed prenatally to alcohol? Our child was misdiagnosed with RAD and presents with very similar behavioural stuff which you write about but our child has Fetal Alcohol Spectrum Disorder. Most children with this are misdiagnosed. Just a thought.
Great blog though so thank you it is how I feel so often raising our child.
Lee, we do not know for sure as we have no background on her bio mom, but we have seen a geneticist for this 🙂
Thanks once again for putting a subject out there that needs to be talked about, Ellen. We don’t necessarily all have the same struggles, but we all have them.
As a worker with a Foundation that specializes in helping parents who have kids with Cerebral Palsy and Traumatic Brain injuries, one of the things I remind parent when they call us for help is that if Momma is not happy (or healthy) then the family will generally come to a grinding halt. It is important that there are moments of respite for parents.
One of the questions I ask the families who call in seeing if they qualify for equipment or therapies is: What is YOUR greatest wish for you right now? I ask that because I think it is really important for the parents who are asking for help for their child, to also know that there are others out there that understand that sometimes, asking for respite care for yourself is one of the best things you can give your child. There is no shame is taking a “time out” in order to prioritize, catch up on sleep or even have a few days of getting your soul back on track with love and peace. Respite allows that to happen.
Thank you for writing about the need to ask for help and the importance of doing so; sometimes all we need is someone telling us it is OK to do what is best for us.
A few days to get my soul back…oh my….sigh !
I encourage every mom or other extra needs caregiver to visit A Mother’s Rest. This non profit was created exclusively for these parents, and by a “wrecked” mom…thanks very much for sharing with your readers.
I think when we are so caught up in just surviving we forget there used to be an easier time, that once we used to have a life that didn’t revolve around melt downs, therapy, gluten free diet etc , you all know what I mean! For me, I feel like I am so caught up in survival that I have lost my confidence in myself.
Your post was timely as I was looking for a therapist. I have spoken to him only over the phone but already I can feel the difference, I so need to off load!
Thanks again Ellen for reaching out across the globe!
Jenni, praying that you find the time with the therapist refreshing and helpful!
I sat and cried at my desk most of the day today. Then this… these beautiful words from someone who understands the things I have been trying so hard to say. Thank you, thank you. With one daughter adopted from foster care with attachment disorder and a biological daughter with depression/self-harm/ADD and anxiety issues, I am just so tired. Tired of feeling like a failure and tired of feeling judged by all the other Moms out there who just really don’t have a clue what it’s like to live this every day. Again, just thank you for sharing.
Thank you for your blog, I love it! This post was exactly what I needed. I just shared with close friends some struggles with our adopted child and they just don’t get it. They kept comparing him to their “healthy” bio children which is sooooo completely different. Ended up making me more frustrated. So thank you for THIS.
We adopted three children from foster care. We were told that the two oldest had some special needs. Wow! What an understatement. The oldest had been hospitalized three times before we even came into the picture. The youngest was supposed to be healthy and neuro typical. Arriving with breathing treatments four times a day, prednisone, and three inhalers dud not say healthy kiddo to us. We tried to start seeing a therapist. Neither of us could continue because of the amout of appointments three kids have. In the midst if this my Mom has been diagnosed with cancer and heart failure. I really feel our world is not just falling apart it’s being shredded into tiny painful pieces. I wish I could figure out how make my life work as easily as it sounds like it should in your article. We don’t have any friends anymore. Family is either too far away or too sick to help. I really wish it was as easy as just getting a prescription and chatting with my doctor. I have the meds but they only help so much. My doctor just keeps saying ” I don’t know how you do it. Try and just breathe deep. Your doing okay so far.” It’s nice to hear but doesn’t really help. The adults are at constantly fighting. The kids needs have taken everything including our jobs. Nobody wants employees that have ‘sick’ kids. We’re drowning but my kids are getting the medical and educational help they need. I hope this article helps some people. I wish it had a miracle solution for me.
This post made me cry. Single mother to a disabled child. I totally get that his needs have always come first. Mine on back burner. I do however see someone and did have to go the medication route for the anxiety and depression. And how lonely it is. Not only all the specialists, therapists, school needs take up time but it is physically exhausting most of the time as the years go on. 14 and half years into this journey and I would not trade my son for the world or any of what he has as it makes him who he is and he is the love of my life, my joy and blessing…but I do wish we had more time for family functions, friends that could or would stop by. The loneliness is what I struggle with the most.
This is completely true. I wish others understood how difficult it is to watch your child struggle. I have a 13 year old boy and twin girls that are 10. One of my twins is in special ed and struggles emotionally. She endured multiple surgeries and trauma at birth and on. My other two children are over acheivers and excel in everything. It is heart wrenching to watch my other little girl have such a hard time daily. It is such a strain on our family. As a mother I always feel guilty and sad. We did 5 rounds of in vitro and i feel like I was too determined and should have been happy to have the one I already had. I am a christian and I know God makes NO mistakes and it was His plan! Your post helps give me a little validation! I have no one to talk to that understands. Thank you!
Cary
Cary, you are not alone!
While I’m not the parent of a special needs child and I cannot personally relate to having a child with special needs, I do have the limited experience of being a wife to a husband with special needs, though they are more physical and less emotional. That being said, there are days where I too feel overwhelmed, exhausted, and burned out. All I can tell you is that you HAVE to take care of YOU. If you don’t, you won’t be able to do your best for others. I’m also going to share this article in hopes some friends who do have children with special needs will read it and feel encouraged. 🙂 Thanks for sharing!
Christina, I just want to say that it has been so fun getting to know you through social media, I love the perspective you bring as a spouse!
Tears streaming as I read this…..I am worn out, struggling, and feel as if I am drowning every single day. With a chronically-ill child who has Down Syndrome and autoimmune encephalitis that has completely changed her causing all kinds of Neuropsychiatric issues, I feel lost, alone and worn. I read this and saw myself….the sleepless nights, the rage, the depression in my little girl……the physical, emotional, mental and spiritual weariness in me…..thank you for writing and putting into words things I haven’t been able to. Thank you letting me know I am not alone and that asking for help is not failure but taking care of myself for my family. Thank you Ellen! God Bless You!
Tamara, sending you big hugs and I am praying for you right now.
Thank you for this. I do see a therapist but I have never felt so alone. I an a single grandmother raising a 12 year old boy with many emotional issues, adhd, rad, ptsd, anxiety, mood disorder. I have never done anything so difficult. My friends have moved on, my family is so critical, I know I should be more patient with him but after writhing ask day I am exhausted just thinking of dealing with his meltdowns and rages.
Teresa, praying for you right now.
Retreat retreat retreat 🙂 I can’t make it any easier for parents!
Thanks Ellen. My 17 yr old son with autism & mental health issues was asked to leave school today because they feel like they cannot meet his needs & due to his lack of attendance. I feel this is yet another blow to his ability to have a normal life because he has little education & his self esteem is so low already. Maybe I should have pushed for another chance but it has been going on for so long and they have tried lots of options already. My heart is hurting for him and there is not a thing I can do to fix it
Diane
Diane, is that legal? Does he attend public school?
Thank you for re posting… this is such a good post for our families out there.
Ellen,
What a beautiful post. Funny thing is I preach and teach the concept of good self- care to families that have a loved one with mental health issues and yet I am the one that needed to hear this today. It has been a long haul, and I am tired and need a little extra help myself.
If you would ever have the time, I would love to hear more about the delicate balance of telling your story without sharing your child’s story. I struggle with this in my writing.
I want to share my journey and be vulnerable with others to point them towards help, hope, skills, and God. I know hearing those that have gone before me on this path has helped tremendously. But at the same time, I want to show my child respect. Any words of wisdom?
Maree
Although our special needs child is now an adult, and lives in a wonderful Minnesota group home, I concur with all Ellen has said. I identify with the pain and frustration. The crying out to God for direction. I found help and solace in counseling for myself. I looked forward to going and seeing someone who was there for me. Thanks Ellen.
How do I even begin to thank you. This is me. This is for me. This is my life right now. Feeling totally overwhelmed and cracking. And while I hear “you’re not alone” I FEEL ALONE. And I want to run away. I think of it and dream of it and long for it. Far, far away.
Thanks for writing about this. I think it might be time for meds. But I am supposed to be strong. Yes, humbles is the word.
Donna, we are supposed to be real most of all, and real takes courage and real asks for help. Sending you hugs.
A friend sent me this link today perhaps in response to a blog posted I today written at the end of January unloading some pretty heavy stuff into the world after just going through one of my most challenging experiences caring for our medically complex 6 year old. I suppose also when you find yourself standing in the kitchen crying on your typical 15 year old’s shoulder while expressing all your frustrations, and hearing him in response questioning God’s goodness, it might be time to talk to someone outside the family. Thanks for acknowledging how hard this kind of life is and encouraging us to get help.
Rachel sending you hugs!
Oh, my gosh!! Thank you for this article! After 19 years care giving for my special needs daughter, during which our marriage fell apart, we divorced, and now I am also a live-in care giver for my father with Alzheimers, I so very desperately need help! I finally decided to go to a counselor ~ just to blow off steam with frustrations on daily life: never leaving the house or having help. Do you know what she told me in the very 1st intake appointment??? “Stop playing the victim”! I have been flying solo for years, never asking for help! I sincerely do NOT feel I play a victim. There is only so much a soul can handle completely alone.
I felt like the whole world misunderstood me and the fact that I just need to not feel alone. I decided to not “complain” or ask for help or go to a counselor again, and then this wonderful article appeared!
Thank you for just understanding!!!
Oh my, since our adoption of 4 special needs, from hard places, traumatically affected little people, my life has been spinning totally out of orbit. THere is no normal, and then I made the mistake of thinking I could homeschool them and our 3 typical children too-talk about overload!!! So, 6 years down the road, I am pretty much a wreck, I am on meds, we moved so I need to find a new counselor, my adrenals are shot, I have zero energy, now I have a son on a candida diet, so there is even more work to do in the kitchen, and we have no close friends or family near us to help-I FEEL SO ALONE-yet my husband tries, hard to be helpful, but he doesn’t walk in my steps all day long, and it is HARD!!!!!!
I can’t even find the time to listen to your podcasts, although the 1 I did watch was very helpful-
thanks for sharing, it always feels good to read about someone else’s hard places!!! We tend to think we are all alone
Sending you hugs, you are not alone in how you feel.