This is a hard post to write because it’s a big issue, it’s something I am constantly working on, an ongoing journey that changes along with the needs of my family. This is not a post about parenting kids with disabilities, or about parenting adopted kids who live with the trauma from their past, or even a post about parenting children with mental health issues. But it is a post about parenting in the trenches, whatever that means to you, because mainly this post 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 that do not feel they live with extra needs, or they feel their kids with disabilities are no different than their typical kids; this post is probably not for you. But this post is for all 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 she lives with the 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. She has mental health issues, along with the trauma we have reactive attachment disorder (a “symptom” of trauma) and we have depression and anxiety that could be related to her disability, or her trauma, or both. And nothing has broken me more than parenting her, dealing with the behaviors, the manipulation, the survival that she lives with no matter how much we love her.
And it was just a few months ago when we finally came undone, when after weeks of challenging behaviors my daughter unbuckled herself and raged in our van, kicking at the door, shouting hate at us, hitting her head as hard as she could, all because we were going to take her to a party and she decided she did not want to go. And my youngest daughter cried silently in her car-seat, closing her eyes as tightly as she could, and my oldest broke down, “I feel like our family is falling apart!” And that statement was all it took for me to break down too, 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.
Weekly calls to her pediatrician and weekly intervention did not seem enough. She wasn’t sleeping so we were not sleeping either. And then one day as I talked to one of her therapists she said, “I see trauma symptoms in you, I was wondering if you would be open to doing neurofeedback too, this tension you are living with is not helping you or your daughter.” Just the day before I had told my husband I felt like I had PTSD and perhaps I needed to see a counselor. That call confirmed the fact that 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 will do whatever it takes to care for our kids, 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!
Latest posts by Ellen Stumbo (see all)
- My Child Is a Person, Not Just An Inspiration - October 4, 2017
- Why Women’s Conferences Need to Consider Moms of Kids With Disabilities - September 20, 2017
- Siblings: So Full of Love - August 19, 2016
Wow! I came upon this and it hit me hard. I already had anxiety and depression before I had children. I refused all psychotropic medications when I was pregnant. My first was in the NICU for 10 days after birth due to apnea and he had rocker-bottom feet (congenital vertical tallus). He had casts off and on for four months. I had post partum depression after that. At the age of 3 he was diagnosed with Autism. I had my daughter around the same time. He is now 8 and she is 5. She is very gifted and has no medical issues. I am a special education teacher. I decided to go back to get my Master’s Degree in Education with a specialization in Autism and Developmental Disorders. I was diagnosed last May with Lupus. Later that month my mom was diagnosed with Non-Hodgkins lymphoma stage 3 while my dad was recovering from hip surgery. I was overwhelmed. Then in July I found out I was pregnant with a surprise baby. I went off the meds. September my aunt died and in November my father in law passed. I had my healthy baby in March. I still finished grad school and I graduate next week on August 11th. I am very tired and have severe PPD. I feel my comments will be lost in all the other ones, and that is ok. I guess I just needed to let it all out.
No… it was not lost… I opened this thru a link and your message popped straight up for me… thank you
Thank-you for posting this. I’m also in my PhD and my kiddo has ASD. It’s a lot and living in a DV survivor shelter, dealing with trauma, being told “everything” is urgent, never seeing friends or getting out… it’s hard and I get it.
Dearest Ellen,
I do not know quite how I stumbled upon your incredible, real and raw, article, but by the grace of God I did! First of all, THANK YOU, for addressing the real and vulnerable things we as parents of special needs face. It’s not always joy or peace or even good some days. Secondly, I wish, oh how I wish, this was around when I was in the thick of it 18 years ago! I have felt very alone many times through out my sons journey. Being born at 23 weeks gestation and having a brain hemorrhage, leads to many difficult years. Cerebral palsy held us hostage on many occasions. I would LOVE to start some sort of place that Mom’s could go to and just cry, talk, and get resources. Just a place that they knew we all understand! Anyway, I am praising God tonight that He brought me to this page and article. May God continue to use you and show you where you are needed, all for His glory! God bless my dear!
Dondi, thank you! Keep dreaming! Dream of what that place would look like, what you would do, how i would be set up. dream and pray and ask God to show you how to make it happen. It is a real need, and what a great way to offer encouragement and support.
Thank you for writing this. I agree with you that help is needed when dealing with special needs kids & it’s a good idea to get that help. I was never able to do that when I needed to the most. My husband that falls in the Autistic spectrum was not someone I could leave the children with. He didn’t know how to handle the situations that would occur with the kids when they were young. I had no family nearby & I often found them not supportive because of the lack of contact, knowledge & not realizing the special needs of my kids. They might think the kids just needed to be spanked or not realize that sounds in the store were what caused my daughter to act out. They would think she should be able to go to stores & restaurants & act like most kids. I wouldn’t take her to places she couldn’t handle or take her out of a restaurant to escape the noise until food arrived.
The cost of care is expensive. Good care is very hard to find. Finding someone to watch your children while you get care for yourself or a child can be a real challenge. I’ve wasted a lot of money on professionals that weren’t helpful. I was told by a psychologist that my kids ate too much fast food when in fact they were mainly eating whole foods prepared at home and no fast food. I was never ask about their diet. I was told by a psychiatrist that my daughter just need to play the Simon electronic game. He never addressed the issues her teachers had said where causing a problem.He just thought the game would improve her memory…the sound of the game bothered my daughter a lot. I had a pediatrician tell me my son just needed to be spanked when he got very upset in her office & lost it one day.The last thing he needed to be taught was to act out physically when mad. I disagree with spanking & that type of acting out on a parents part would have just escalated his behavior. That might have been our last visit with her. I had a daughter I tried to get help with on issues surrounding autism. She was evaluated for a whole day at a great cost to me. I had to get a trusted friend to watch my son. At the end of the evaluation I was told that my daughter needed to come in 1 time per week to work on handwriting for a whole year. She had very good handwriting & I sent them a copy. She didn’t at the evaluation do to the anxiety it produced. They essential cut contact & cancelled the plan after I sent a sample of her handwriting. There was no suggestions or follow up to address the main issue I had brought her in for. At the point I wasn’t trusting that they would be of any help.
I agree with everything you wrote. I just spent so much money & time when I could, when I was not to overwhelmed, when I found someone that could watch both kids or one of them and got no where. I mainly made it through. My kids are late teens now, but it would have been so much easier if I could have found more support & good professional help when I needed it. Cost for many will be a huge barrier, finding someone to help with kids or kids & finding competent help. Parents of special needs kids have a lot of trouble providing each other with support when they don’t have time or energy. I was lucky to have made a very good friend that was dealing with the same issues as I was. We ended up living 2 state away by the time our oldest kids were 3 but the phone calls & support were life savers. She also dealt with many of the difficulties I did. She was once told by school officials that work with special needs kids to lock her son in his room all day by himself as punishment for some form of bad behavior at school when he was 6 years old. He falls in the Autistic spectrum… She ended up homeschooling him & he’s turned out to be a great young adult. Getting help from professionals was just not possible or affordable for her. She did a terrific job on her own with no emotional support from her husband or parents & often having to deal with their criticism while working with a special needs child. Everyone blamed her for her sons behavior even though it was most likely genetics & appears to have been passed on from her husband that also falls in the autistic spectrum.
I agree with you that getting help is important but I think that can be very difficult. I just wish there was a way to help Moms or Dads that are struggling that are not going to be able find or afford any useful professional help…Moms & Dads that are also fighting with spouses & their parents about the needs of the child on top of all the other stresses. All of those things are a great barrier to getting help & I believe affect a huge population of parents of kids with special needs.
Thank you for the article. I do have a learning disability so if I type something incorrectly, please forgive me. But thank you for speaking from your heart. I parent foster children that come from all walks of life and it is a really challenging job to do, I will love them for ever even if they don’t always want it. But also we had a birth daughter that passed away but had a brain injury at birth which presented many issues in her life. I cherish all the days we had with her. I’m proud to be these children’s mother, hard at times but will always be there.
I am a single mother with 3 children, all who have disabilities. My oldest has Asperger’s; ADHD; ODD; anxiety; and depression. My middle child has Autism; food allergies; multiple learning disabilities; anhidrosis (doesn’t sweat); hypermobility (loose joints); arthralgia (joint pain); and GI issues. My youngest has ADHD; ODD; anxiety; low-grade depression; and emotional disorder with mixed disturbances of emotions/conduct. About 3 years ago I learned I had an anxiety disorder. I literally had a full blown panic attack at work completely out of the blue. Nothing crazy was happening, nothing disturbing or upsetting. Things were going perfect. I was taken to the hospital via ambulance because my work thought I was possibly having a heart attack as my left arm and hand we’re going numb and I started breathing really heavily. Turns out it was a panic attack. A few weeks later I had the same thing happen once again and I was shaking uncontrollably for two days straight and couldn’t sleep. I went to the hospital again, and again was told it was a panic attack. The Dr at the hospital asked me if I was under any type of stress or new stress. In my mind, my 3 kids with disabilities wasn’t a stressor anymore as I’d been dealing with it by myself for about 10 years. With the help of a friend, I came to realize that this was my stressor and for some reason finally decided to rear its ugly head as anxiety in me. After trying 3 different meds that didn’t work at all, my insurance finally approved the latest med for anxiety. I am on the lowest dose possible, and have been for almost 3 years now and it works like a charm.
I work full-time at a public high school, working with kids with special needs, and I am in graduate school (for a whole year now) full-time working towards my Master’s Degree in Special Education. Such a rewarding career that I never thought I would see myself doing. Thank you for this wonderful post as it helps to know I’m not alone and that I did need to seek help and I’m so glad I did!
Ellen, thank you so much for this article, I have sort of kept myself together for 17 years with my son with cp, a husband and 2 typical daughters, but then the unexpected happened, my husband had a major stroke and now I take care of 2 special needs people, this is breaking me EVERY DAY! Once I got overly angry at my sweet typical 7 year old I slammed a butter knife on my glass cutting board, shattering it to pieces, my 12 year old sat at the dinner table crying while i ran around with the broom sobbing and saying I couldnt take it anymore, that day was the realization that I was not well. This is going to be a long journey, and I so glad I have people like you to open up to. God bless you?
Laura, you left this a few months ago, but I want you to know that today I am praying for you.
Ellen, I have 2 children that have physical disabilities (16 & 9), due to Cerebral Palsy. The youngest has had many more medical issues we are dealing with and sees 6 specialists for all these. The first three weeks in September, I went to work in tears as mornings are very stressful in our house and now we are looking at taking him to Children’s Hospital Of Philadelphia for more answers. I struggle many days just to put my feet on the floor and face the day. There are many people, including my own family, that don’t understand what parents of Special Needs children go through on a daily basis and it is frustrating. I’m a single parent and I find it very difficult to ask for help as I don’t want others to feel burdened. Some days it is challenging to get through the day with appts, PT, gym time for me, homework and such but I somehow do. I am one of those parents you mentioned that does everything for my kids and if there’s time left, some time for me but it makes me feel guilty. I’m sure some counseling would be a good idea but how does one fit that into a schedule that goes all day?
This article hit the nail on the head. Thank you so much for sharing it. I think the explanation is really clear on how a parent can feel. My hope is that this will really speak to the ones that just don’t get what a parent with a special needs child goes through physically and mentally.
This article is so well stated. The heart of this read was palpable as the content is so straightforward and expressed so poignantly.
I, as a Christian, do not understand why the churches of those of us who attend regularly, are not aware of these challenges that many of us face and if they are, don’t reach out to a group of people who are desperate for some much needed relief of any type!
Honestly, the ‘modern church’ in my humble opinion, are as consumed with ‘entertaining’ the body gathered more than pairing people with others who have needs of epic proportions on their plates every single day of this life.
Where’s the preaching from our contemporary pulpits that expresses what all our bibles say and that is to mimic the early church where everyone shared whatever they had so that there was no lack in the body of Christ.
Lord help us all to look and act MORE like Him when it comes to the needy right under every church roof that exists here in the USA particularly us special needs parents!
Rant over.
I myself have used the term PTSD and I believe that is exactly what we suffer from. I too am in the same situation and it has not been easy. I also write a blog and I suggest Faye never reads it because with the lack of sleep and limited time I am lucky to get anything written. It’s a grammatical mess.
Thanks for the great post!
I started my own blog for exactly the reasons you have spoken about with raising a child with additional needs. I have been depressed, suffered anxiety and felt so alone – still do. I really connect with what you have described – it is hard to get help, admit you need help and to see how life can drain you. Thank you for such an honest post I will come back and read more!x
THANK YOU SO for such a well thought out article! PTSD here at one time. I found a counselor could not counselor a life for me, meds were not the answer. A girl’s night out was fun but just running from the issue…i needed some life that was of my choosing and under my control and just for me. I committed to an “obligation” that was creative and a joy for me, away from the family for a couple hours each week. At the house, i decided i deserved flowers, the more the better, and the best way to have them was in containers so I took up container gardening. Now, I can savor one bunch or many and it always gives me joy. Additionally, I take one prescription VERY SERIOUSLY…that of filling my day with laughter. I work at it. It is a game-changer.
Ive never read anything that had touched me like this article has today. You said it all. I had my son shortly after my 20th birthday. He was born with 6 birth defects 3 months premature. Hes two years old now requiring 5 different life supporting machines. mentally, emotioanlly and physically disabled requiring my everything. i appreciate your post i really do. thank you#
Thank you so much for this. I know God lead me to this. I appreciate you and pray you are blessed for your words!!
I am so glad I read this! My life is a wreck right now. I have three beautiful children. My oldest is 9 with ADHD. My youngest is 10 months old. My middle boy, he is 5, and he is my special needs baby. He has ADHD, ODD, OCD, mood disorder, palilalia, and emotional disregulation, severe eczema and other issues. He refuses to use the potty, he is completely oppositional. He also has crying fits and meltdowns where he is crying and screaming for hours. I am just barely surviving. It is hard when I feel so alone. I quit my job when I got pregnant with my youngest so I could take care of my special boy while being high risk during pregnancy. Its been a rough few years.
Thank you for writing this, it is all too true. I recently found betterhelp.com. being able to ‘see’ a therapist via email on my schedule has been a huge weight off. Its a great option for anyone struggling to fit their own therapy needs in.
As the mother of a multiply disabled child for 31 1/2 years, I can tell you that we all need special considerations whether we like it or not.
Thanks for writing this Ellen. You said what so many of us feel. I have found that with a prayer and a plan, I was able to keep putting one foot in front of each other. Recovering my son from autism is the hardest thing I ever did. You are so right that we need to make sure we are okay so we can continue the mission to help our children. Hope you will check out I KNOW YOU’RE IN THERE. On my website you can preview the book. Contact me if you would like me to send you a copy! Love what you do for others!
I feel like,it all the time. I have an autistic godson whom his mother did not want he is 22 now and time consuming with my mom that is 87 I feel very lost and alone most of the time. No one understands the pain I feel and the loneliness I feel . the melt downs are taking there toll . thank you it helped me feel not so alone
You are an amazing woman to step up to the plate and do this for your grandson!
I would of preferred you said parenting a child with special needs rather than high needs. What exactly is high needs? I just feel that some parents might read this and think my child doesn’t have high needs like yours but I still feel like this and blame themselves. But hey, maybe I am not looking after myself and feeling over sensitive!! I did enjoy, empathise and learn from your story and thanks for sharing.
Debra, I used the terminology of the study I quoted where they included children with disabilities, children with chronic health issues, and children with mental health issues all as “high needs.”
Thank you for your heart to share. It’s 4:15 am and my 30 year-old son has been admitted to the hospital for the second time this week. He has uncontrolled seizures Fragile X and autism. Tonight he almost ended up on a ventilator. I’m tired. I’m wrecked. I sent my husband home to try and get some sleep. He works at this same hospital and I’m sure to him it’s the last place he wants to come back to during his non working hours. We remarked that our most intimate times of conversation are usually during these trials of our son’s hospitalizations. It is lonely though. People care. They pray for us and I know they earnestly wish there was something that they could do or say. But what can they? It’s our journey, our heartache, our lives. Some days I allow myself to have a meltdown , some days I cry in the shower, some days I let myself think I have this all under control. Most of the time I just have to lean hard into JESUS because there is nothing else sufficient but his grace.
Lisa, I wish I could reach across the screen and give you a big hug. Praying for your family today!
im a single dad with a special needs son. Thanks for the article I know I need to ask for more help I tend to forget about myself. Thanks
Yes, dad needs support and help too. Praying for you today Calvin.
Thank you so much for your honesty! I am finally just now coming out of the deepest, darkest depression that I have ever experienced! I have felt many of those feelings and have done a lot of crying in my bathroom! I have a son with Asperger’s & ADHD and a daughter with ADD & Anxiety issues! I have felt physically and mentally exhausted for such a long time that I have finally decided to get help for myself! I started seeing a therapist and it has already seemed to have helped! I had a breakthrough back in February which lead me to write my first blog about my experiences about being a special needs mom! I wish I could find a friend like you(here in my home town)someone with the same experiences, thoughts, heartache because I have felt alone for a very long time and its a lonely experience to go through by yourself! I’m so glad that you were brave enough to express yourself! I will continue to work on myself and I thank you for you heartfelt story, it was refreshing to know I’m not the only one out there going through these same experiences and feelings! Thank you again, Margo
Margo,
I just want you to know I will be praying for you and that God puts a friend in your path. I am here if you ever need a shoulder to cry on or need to vent. I live in Ohio, wasn’t sure where you live. Nicole
PA! I’m going to start back at our local Autism Society meetings hopefully I will meet up with someone there! Thanks for your prays!
Margo, you are not alone, and I am so glad to hear you are taking steps to get help, it is so important for us as parents to do so. Praying for you today!
Thank you!
Thank you so much for your honest thoughts. Our family has been on a journey for many years now with my older son who has OCD. I am exhausted. He will see improvement for a short time and then it flares up again. It does affect the whole family. I have seemed counsel and I am on medicine for depression and anxiety. I too believe I struggle with PTSD. I pray everyday for strength and guidance for helping my son live a normal life free from this disorder. Thank again for your encouragement to take care ourselves. I do need to make more time for me. God bless.
Tori, praying for you today!
Ellen, your post goes to the heart of a special needs issue that is my passion–PTSD in kids with special needs a PTSD in their parents. In fact, DifferentDream.com just started a series about PTSD in parents and the response has been overwhelming. Thank you for being transparent and putting this issue in the forefront where it needs to be. When you want to talk about treatment centers for your daughter, I’m just a phone call away.
Thanks Jolene!
I love this. I am thankful to hear that there are others that lock themselves in the bathroom & cry on occasion, other kids that have meltdowns in the car, & even others that have typos. Yay! I’m not the only one! It’s good to not be so alone in this.
Yes Stephanie, you’re not alone!
I thank you so much for sharing what many of us are feeling. Thanks for your honesty. I come across too many people who live in denial or who don’t understand. My older daughter has cried many times in the van and feels like our family is falling apart when my daughter with severe anxiety, autism and mood disorder is screaming, kicking, etc. And I cry all the way home. I am encouraged to seek counseling after reading this today.
That is great to hear Nicole, I’ll be praying for you!
Im sorry but I had to stop reading once you said “WEATHER its a child with a disability”….
I fixed the type-o for Ellen. Hope you can finish the post now and hear her heart of compassion and grace for others.
Really?? Get over it!
That was for Faye
Faye Rose, you missed the apostrophe in “im” and forgot the comma after “Im sorry.” Also, there should be a comma after “said” and punctuation, including “….” goes INSIDE quotes, not outside. You know, since you feel so superior in your writing skills.
I’m also big on spelling and grammar, but everyone makes a mistake once in a while, even you.
As for the post itself, I thought it was beautiful and truthful. I’m feeling the same way these days. Thank you, Ellen, for saying what the rest of us need to hear.
Where’s the “like” button? 🙂
“LIKE!”
I think this was a very truthful article! If Faye was that hung up on a type-o, then she sure never parented a special needs child. My child is now and adult that still deals with problems, but we are past the “raging” years when I thought I wouldn’t make it. Thank you Ellen, for letting parents know they can hurt, sob, or whatever when they are suffering. I remember screaming at the top of my lungs alone in my car after dropping my child off at school, praying they would be able to stay. Nothing in my life has been as hard as those years!
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WOW! What a callous & harsh comment. Here this woman is discussing the stress levels in her life as a special needs parent (who lacks great amounts of sleep, mind you) and you make this type of comment about a typo? YOU have just embodied the very picture of ignorance, if ever there was one.