Parenting a Child with Special Needs
Many parents experience times of fatigue, loneliness and high levels of stress.
It is not uncommon for parents to put their health on the back burner as they care for their children.
This often leads to a lack of energy and feeling anxious or even hopeless at times.
Special needs parents face an entirely different level of stress as they navigate not only the typical responsibilities of parenthood, such as feeding, clothing, and general care of their children – but they also deal with a unique set of challenges related to the special needs of their child.
READ: NOT WHAT I EXPECTED: HELP AND HOPE FOR PARENTS OF ATYPICAL CHILDREN
As children grow and become more independent, typical mothers get some relief from providing constant care and support to their children.
Special needs parents may be faced with a lifetime of caregiving for the complicated medical and other needs of their child.
We all know how important self-care is to maintain a sense of well-being.
Special needs parents, in particular, need to find realistic ways to practice self-care since there is a higher likelihood of caregiver burnout.
RELATED: SPECIAL NEEDS PARENT ISOLATION
Parents of children with special needs tend to face a continuous barrage of challenges from isolation, financial strain, exhaustion, guilt, and hopelessness.
Over time, if these circumstances are not addressed, the stress of special needs parenting may turn into depression.
Special needs parent depression is more common than you think.
After all, parenting a child with special needs has been compared to the stress of a combat soldier.
It’s no wonder that we may experience symptoms similar to PTSD as parents of children with special needs endure chronic stress and overwhelm.
READ: THE ELEPHANT IN THE PLAYROOM: Ordinary Parents Write Intimately and Honestly About Raising Kids with Special Needs
If you are a special needs mom struggling with depression, I want you to know that you are not alone.
Even in this day and age, there is a stigma surrounding depression and mental illness. It is often associated with weakness.
You, and I, are anything but weak.
It is especially difficult to admit that we, as mothers, struggle with depression.
You see, we are the caretakers. We are the ones to make it all better for our kids.
How can we possibly need help for ourselves?
There is danger in thinking this way.
If we just continue on without getting help for ourselves, we risk a complete and utter breakdown.
And then how useful will we be to our families?
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Here are some signs of special needs parent depression:
- unhappy most of the time (but may feel a little better in the evenings)
- lost interest in life and difficulty enjoy anything
- more difficult to make decisions
- difficulty coping with things that never used to bother you
- exhaustion
- restlessness and agitation
- decreased appetite and weight loss (some people find they do the reverse and put on weight)
- takes 1-2 hours to get to sleep, and then wake up earlier than usual
- lost interest in sex
- low to no self-confidence
- feeling useless, inadequate and hopeless
- avoidance of other people
- irritable
- feel worse at a particular time each day, usually in the morning
- suicidal thoughts
If you experience a handful or more of these symptoms on a regular basis, it is a good idea to speak to your doctor.
We all have bad days and want to just power on and do what is best for our kids.
But let’s face it. Taking care of a special needs child is hard work.
Whether we want to believe it or not, taking care of ourselves is critical to the well-being and success of our children and families.
You may not even realize that what you are feeling is depression and that there is support for you.
You may be surviving, but just barely. I urge you to at least ask for help.
This special needs parent journey should not be taken alone.
Please reach out if you are feeling overwhelmed.
You can always connect with me via an email and I’d be happy to support you.
I’ve been there and I’m sure I’ll be there again.
READ: SUPPORT FOR SPECIAL NEEDS PARENTS
Be sure to share about special needs parent depression on Pinterest so you can help other parents of children with disabilities cope with the stress and overwhelm:
68 Comments
I can’t tell you how timely and needed this was today. Feel epicly alone right now, even though I have people along side of me. None that can fully understand because none walk in my shoes. Single mom, with several adopted special needs kiddos. From adults to minors. All who’s global needs range far and wide, and in directions that weren’t all expected once upon a time when they came home as kiddos with stories and paper work and visible diagnoses/labels etc… SO much more to their bigger pictures as they’ve grown up, not grown up, and become the treasures I love so very much.
But oyvey…
Yes, it’s so tough to feel alone, even when people are around. I get it. I’m glad I was able to give you what you needed to hear. You are not alone. This is hard. So very hard. My husband describes it as high highs and low lows. Hopefully you have some high points soon.
So needed this today my girlfriend of almost 6 years has been having a really tough time lately and I took her wanting to run away and feelings of usefulness as wanting to leave me. I feel horrible for the way I acted but there were things said and done on both sides and so far she refuses to go to the doctor her son is 14 and I treat him as my own I don’t want to lose either of them
Hi Scott – thank you for my comment. Keep being supportive of your girlfriend. I wish you the best.
I cant believe i have found something that just make me happy in a sence i suppose, I have a child on the spectrum, has melt downs all the time, no one will no even the specialised people that are suppose to help you, however this year turned worse for me as my anxiety became worse but instead of my partner helping me he had me arrested infront of my child who had these special needs, making horrible accusations just because he could not lead the life we lead amd wanted me and my child out of our home, my child was handed to his father and now i’m fighting a custody battle. Now my child who has needs is all over the place, i cant get to see him to help him. Please help advice and guidance required.
I am deeply struggling with depression —— my daughter was only 10 hours old when she was injured by a vaccine. She cannot eat food and has a severe allergic disease. I had to learn how to be a mom, to a screaming, arching baby in pain who would scratch at my chest and wake every 30 mins.
We didn’t think it was going to be long term initially – I was coping ok then. When I found out this is life long, I broke down. My family didn’t like the way I was handling it. My father accused me of making up symptoms; my mother attacked me on more than one occasion.
I gain a beautiful little girl who is so full of light, but who takes medication and doesn’t sleep, cannot eat, has liver issues…. I lost my career and my entire family.
I need specific help —- I cry every day. I have so much guilt for what happened to her … nothing really helps
Great read!! So relatable.
I needed this today. How do I follow your site? I can’t find a button for following
Hi Kesi – I am glad that this spoke to you. Know you are not alone. If you wish to follow, then I would grab one of the ebooks so you can opt in to getting the newsletter and following the site. If you do that, you will also get an option to join my special needs parent support facebook group which is a great place to connect with other parents who get it.
This article definitely rings true in so many ways but I have to point out that there are alot of dad’s out there who also suffer from depression due to caring for a child with special needs. Some men are in fact the primary care givers in the household. And even if one parent is not the primary carer for the child they are still affected in the same way.
You are 100% correct. I do not mean to exclude dads at all. I know that they may be the primary caregiver and are also affected. The majority of my readers are moms. I know that it is important for ALL parents and caregivers to be aware of burnout and depession. Thank you for pointing this out.
Excellent post but please don’t just make it relatable to moms. If anything, men are even more susceptible to Special Needs Parent Depression, Dads are often seen as the “heads of the household” and as such likely to try to “shoulder the load.” That’s not even taking into account that men are far less likely to seek help for depression.
I know it wasn’t your intent to be exclusionary but a broader perspective was needed here.
You are 100% correct, Bud, and I apologize. I tend to write toward my target audience which is primarily moms. But, in this instance, I do not want to exclude dads at all. I will be more mindful of that. Thank you so much for sharing your perspective.
Don’t get me wrong, these articles are great. I enjoy reading them as my wife and I have a special needs child. But why are they always written to women, moms, etc. Its really aggravating that it seems like no one cares that men have similar or same issues but are not talked about.
I would like to get a level of understanding from the writer, do you have a husband that helps with your special needs child? If so, what was that like. If not, i can understand how your writing this.
Hi Nathan – I would not say that I don’t care that men have similar issues. I realize that they do. It’s just that I write from my own perspective and my primary audience for my blog is women. So I tend to write to them because I write from a mom’s perspective. My husband does definitely help. I am very lucky. I have actually talked to him after I have gotten responses from men about possibly sharing his perspective as a special needs dad. It’s something we all need to be more aware of since there seems to be less out there from a dad’s perspective. Thank you for sharing your thoughts. I do appreciate it and it’s made me be more mindful of ALL of the parents of special needs children.
I really would like to thank you for this post. I am so lost i dont recognise myself everyday is a complete struggle from morning till night some days are harder than others some days i could just give up completely. I have asked for help from professionals and nothing happens
Hello – I am sorry that you are not getting help from professionals. Maybe you just have not found the right ones? I usually have a checklist and bring it with me. I am actually planning to add a checklist to this post so people can use it for this very reason. Did you join the Facebook group? There are people there who “get it” and can certainly relate. It makes it somewhat bearable to know you aren’t alone. Please do join if you have not done so already. I plan to share the checklist there and add it to my post soon.
The last few weeks my anxiety level has been ranging from bubbling just under the surface to full blown anxiety attacks. This was a very opportune time for me to find your article. Thank you for giving me an awareness on my own personal crazy. I tend to feel the brunt of my child’s life rests on my shoulders even though I am married to a loving husband and father.
I definitely feel very enmeshed with my children’s lives and sometimes it’s just too much to bear. I’ve experienced full blown depression and panic attacks. I think awareness is the first step to getting better. I am glad you have a loving husband and wish you the best!
It’s hard to be the parent of a special needs child, it can drain you. We need to be able to take care of ourselves and not be ashamed of not being “perfect” all the time.
Hi Wrae – It can 100% drain you. I carry a lot of guilt because I often feel like I’m not doing a good enough job at this special needs parenting thing. Writing this was therapeutic – check it out: https://lifewithasideoftheunexpected.com/special-needs-parent-guilt/
Thank you so much for sharing this! I am a simgle mother, I struggle with my own health problems and have suffered from anxiety and depression my whole life. I take two antidepressants and an anxiety med and I still feel lost and burnt out. I don’t have any real friends outside of family and family is always busy. Sometimes I just want to give up and run away.
I think we all have times where we want to escape – special needs parenting is not easy! I hope you can join us on the FB group. It makes it a little bit better to have support from others who “get it”
Great timing for this article. All three of my boys are special needs in different ways: oldest is severe ADHD and highly gifted (2e) with anxiety and dysgraphia, middle man is gifted, anxiety and incredibly shy and hyper-sensitive, littlest is gifted and has chronic Lyme disease which we have been struggling with for over a year. I am very active in the elem school and work from home and seem to be struggling so much more lately to keep it all together. I have my own health issues rhatbhave takem a backseat for years as I spend my time devoted to advocating for the needs of my three amazing little boys. Sometimes it’s more than overwhelming. Bc is my own health issues I cannot take anti-anxiety/depression meds so finding a way to make time to find a way to quiet my brain is not so easy. I always remind myself that it could be worse… many parents would give anything to trade spots with me and that’s what keeps me going. Mammas unite and know that we are in this together 🙂
Excellent article! Even worse is whe we adopted my son and found out he was fragile x…my husband couldnt handle it and left us…justin was just 3 years old…he is now 23 and i have gone through this jouney alone with no support….has been very difficult…and yes..i am on prozac! Lol
I’m so sorry your husband left. I cannot even fathom that, but it showed his true character. And yours as a loving, caring mom (even on those most difficult of days!) You are not alone.
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My son was diagnosed 2.5 years ago with a rare form of epilepsy. In those 2.5 years he went from a normal happy brilliant (could read at age 2, started doing math and recognizing geometrical shapes at 3) little boy, to not knowing his own name. I don’t know if he recognizes us anymore and I can’t remember the last time he called me mommy. I live with this overwhelming sadness because I miss him. We have been in and out of the hospital the last 2.5 years and I never know what the day will bring. And it’s weird but I live in this place where I can’t move. Many kids grow out of what my son has and some don’t. So I feel like I am just on hold in my life trying a million different treatments and strategies to help my son and never knowing if any of it is going to work and if I’ll ever see my son again. I just don’t always know how to deal with the hope of having him back or the disappointment that he may never be the same. Sometimes I feel like it would be easier if I could give up hope and move on from this limbo but my heart and soul will not let me. I can’t help but have hope that he might come back to us one day or at least a resemblance of what he used to be. I tried some anti depressants but suffered horrible dizziness from them and now I no longer have insurance and we can’t really afford any doctor bills plus I’m not really a big fan of taking meds for myself as I have had some side effects but it has felt good to let out a little bit. It’s also hard for me to talk to people about this bc I feel like everyone is looking at me waiting for me to break and if I show my struggles people are going to think I’m having a break down. Which I’m not. I am just sad. He is my oldest. I have 2 girls as well. I found out I was pregnant 2 months before all of his problems started and since then it just feel like the rug has been pulled out from under us. I don’t know if I’m depressed or if this is normal for our situation but I’m glad I was able to share with you all.
Hi Amber – you are not alone in these feelings. I think we all have times where we feel like it would be easy to give up hope. Have you joined the Facebook group for support? It may help to connect with others who get exactly how you are feeling.
To Amber – it sounds like both – you are depressed and this is VERY normal for your situation. You are having a normal reaction to a very unique, not normal set of circumstances. Your body, mind and spirit are telling you to be alarmed because things are not the usual experience. When you feel these “symptoms,” it means your body and brain are working properly. I know that the symptoms are uncomfortable and that is hard. Managing these symptoms can be tough. It is ALWAYS OK to have hope. It is ALWAYS OK to do everything that you possibly can in order to help your son. Please try to remember to love him as he is now as much as you loved him then. Enjoy every single accomplishment. And when you find something that doesn’t work for him, it is not a failure. You have successfully found something that doesn’t work. Time to move on to the next thing. I am so proud of you. You are doing an awesome job. Keep the faith, Mom.
To Laurie – thank you so much for this post. Special needs parenting can be so tough sometimes and I have a son who’s smile lights up the universe. Truth – He is amazing and my treasure. Also a Truth – I am WIPED OUT. Always on alert. Always fighting for him. I have recently started a new blog – livingthespecialneedslife.com. Laurie, I would love for you to visit and comment and join our conversation. Please join us.
Hi Mara – thanks for your comment. Yes, wiped out from always being on alert and always battling. I get this! I will check out your new blog. Best of luck with it!
What I find difficult was the social isolation, all our friends left. My husband & I only have each other. My husband’s family we chose to not see anymore because they are angry abusive people. His cousin was treated terribly by the extended family because he has a disability so protecting my twin boys from that was a good decision. My family lives hours away. My colleagues look at me like I have 2 heads because I look for things to celebrate in children & people. Unfortunately because they don’t understand my journey they don’t understand why I talk about meeting emotional needs of children, no blaming, teach skills & problem solve. They tease me because they think I’m not like the rest of them, that I would never use the work f*ck even though I do like other people. They think of me as some holier than thou person because of my journey I’ve learnt to look beneath behaviour to see what is happening with my children. I also have major problems from a spinal fracture that limits how many hours I can move in a day. I watch the world go by. I spend my time supporting the students I teach & my twins & hubby. Being a parent of children with special needs changed my entire life. I am in service to my children, the students I teach, yet I am a target for ridicule because of how my boys special needs taught me to treat & handle people differently. My peers don’t understand me, make fun of me & socially exclude me. My walk is lonely. It’s nothing I can change, but it’s a journey that is mostly in solitude. It’s made me strong but also has side effects that most people don’t talk about.
Hi Shell – other people will never be able to truly understand your journey. It’s unfortunate that they ridicule, but you know deep down that you are doing what is right for your children and it sounds like all children. Hold that close to your heart. I am sorry things are tough for you and you are socially excluded and also have your own physical struggles. I hope the online community can help you feel less lonely. Thank you for sharing your comment.
I feel the same way. We are alone and can not count on anyone but ourselves. Bottom line is no one gives a crap about us. I can truly say, that if anything would happen to our small family (it is just my husband, my son and me) no one person would even notice. All we have is each other. We are socially excluded from the neighborhood and the school. No one ever calls us to see how we are doing. I say to hell with them all.
I am so sorry you feel alone. Have you been able to connect online? I think it’s so important to connect with others who “get it”.
It doesn’t help that they look at family members in isolation and don’t take into account the cumulative effects of multiple conditions in the same family into account or how much emotion and physical support or demands is received/required from wider family. It feels like until you hurt yourself or your children no one wants to know
I’m sorry Joanne. There is so much to consider when special needs are involved. Families are all affected in different ways. I hope you are able to find some support.
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Thank you for putting this issue into words, so beautifully. I hope you don’t mind if I share your perspective? I write a blog about my son, ” (You Can’t Stop the Waves, But You Can Learn to Surf”) but it is mostly a way to update people on his progress. I do like to include thoughts about my own challenges every so often, but I try to keep it positive because my audience is mostly friends and family. Still, I am working on opening up more so that they better understand me as well as my son, and also so that my photography clients know that I can relate to them. And by the way, you are doing great!
I don’t mind at all – please do share! I think it’s so important for people to know they are not alone and that there is hope. Thank you so much for your comments. I find that I am in a much better place when I do allow myself to open up. It’s hard to go it alone on this journey.
This really hit home for me and my husband. Our youngest son was diagnosed at age 3 with Autism and has been in special education all of his life. The challenge we had when he was younger was trying to keep him safe and healthy all the time..he would not be aware of his surrounding and he couldn’t communicate his pains. He is now almost 19 and I can say that probably the journey to get him through his teenage years was harder. He would consistently get ear infections, stomaches, headaches and we couldnt figure out what was wrong. We finally took him to an allergist and he was diagnosed with having severe allergies to almost everything- outdoors, milk and pet dander. His ear and stomache issues result from his allergies. We have him on meds but they are costly and when he turned 18 his insurance got cut off. we decided to get his disability reevaluated. The neurologist told us he has an I.Q of 95, Has ADD and is autistic. Despite all this…he is a straight A student and is very handy when it comes to electronics. We still struggle with communication but the medicine for Add is helping him have a voice.
Thank you for sharing, LaFrieda! Keeping our kids safe and healthy is our primary concern. I wish you well in this journey.
Thank you for your story! I honestly thought I was the only one going through these feelings of depression.. some days are hard that I don’t even wanna get up from my bed, but I know I have 2 amazing kiddos counting on their mommy to do the impossible. Some days I feel like I’m superwoman and can do everything (perks of anxiety) but then theirs the days I feel like I’m drowning, isolated, useless, guilty. My son suffers from autism, I’ve just been at it with him for 2yrs now, it still feels like the day they diagnosed him.. He’s in OT, Spch, Phsy therapy in the process to see if qualifies for speech technology to communicate with me (yes he’s also none-verbal,) managing the correct medication for him has been difficult but finally there.. I can see it can get overwhelming sometimes and when I’m group or simply waiting for my son to come out of his session I tend to make friends and ask them there stories and compare things our children do to see if they’re alike in some way (nope lol) I mean I have a great support system my family. But sometimes that isn’t enough for a special needs parents, their is stuff we don’t wanna share, feelings that ppl won’t understand and might judge us for it. We are expected to have our act together put aside anything that’s wrong with us, because our special needs child needs us and we can’t break down.
So thank you! Glad to know I’m not the only one 💕
You are definitely not alone, Naomi. I have a whole special needs parent support group on Facebook full of other parents who “get it” – if you haven’t already, grab the free ebook on the post and you will get an invite to the group.
No matter female or male taking care of a child with disabilities is whirl wind of grief, anxiety, and depression. There’s nothing exciting watching your child suffer or go through rough times. There really is no relief the constant stress of health care, child care, education, physical, occupational, speech, or whatever else comes along it’s hard. It’s harder for longer period of time. Then the stress of transitioning from home to school to
Community. It’s all so uncomfortable, no matter how strong we look we are all saying make it stop,
Make it easier, but it’s never the case. Our self care lacks due to the overwhelming amount of stress we deal with daily. Self care is needed but almost never available. We learn this through how people react and offer help around us. Eventually it becomes a normal for us. Is this a special needs parent issue or a social issue for lack of awareness?
Hi Brittoni – yes, I have found that special needs parents often lack self-care and it takes a toll on our health.
I am a SN momma who deals with anxiety and depression (without the added pressures of SN parenting). You have mentioned a Facebook group, but I can’t seem to find anything about it. Help?
Hi Robyn – if you grab a copy of the ebook, the link for the Facebook group will be emailed to you. Hope to see you there!
I really needed this. I am struggling and I could not figure out why. My son is 19 yrs old with multiple disabilities. I usually am very strong and good with my emotions but for the last couple of months I have been struggling again. I do not t really have anywhere anyone I could to turn to, so I battle all this on my own. I have tried to reach out to people but they make me feel worse, eventhough they think they are helping, so I don’t speak out much. I kinda keep it inside. This article helped me understand myself and out my dream of thinking back on the right track. So I thank you!!!
Hi Jennifer – I am glad it helped. I have learned to keep reaching out because I can not do it on my own.
“If you are a special needs mom struggling with depression, I want you to know that you are not alone.”
You can say “Parents” as many times as you want in this article, but it only takes one instance of this to make me realize that again, nobody gives a shit about dads.
Hi there – when I first wrote this, I also had a dad react similarly. I took his comment to heart and changed it to parents where I could. I also told him that I write from the perspective of a special needs mom. So that’s who I mostly relate to. That does not mean I don’t care about dads. I even wrote a post specifically for dads after the initial response. Feel free to check it out. https://lifewithasideoftheunexpected.com/parenting-a-child-with-special-needs/
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Thank you for putting this out there. I came online to try and find some kind of inspiration to pick my self up.
This is a really hard season in my family, my marriage is crumbling, my family and friends don’t check in anymore, my life have just been to hectic and complicated that people are pushing themselves away. They ask how I am, I say not good, and that’s it, no one cares, no one replays back or checks back in.
My 7 year old has spina bifida and MANY other medical conditions related to and not that make things even more complicated then most with it. My middle is healthy, my youngest (19 months) also has an unknown genetic condition with many medical things going on as well. I spend my days with tubes, feeding tubes, Injections, Blood checks, tests, sedations, out of town doctors appointments 3-5 days a week, new diagnosis weekly is seems, adding more and more to list as a mom. I can’t stop, no one else can keep up like iam, no one else can do this job for my kids. I have no other option, and I’m doing it with what feels like by myself.
Hi Danielle – I am so sorry that things are so difficult right now. I often find solace in my online “family” of other parents who “get it” because it’s just so hard to feel truly supported in real life. People don’t get it, or don’t know what to say – but, either way, it is lonely a lot of times. I hope you join the online community of parent support. It really has been a lifesaver to me.
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AAAAAAAAAAH, so nice to just sink in and feel UNDERSTOOD!
Amen, and yes,
and thanks,
and love,
Full Spectrum Mama
Thanks for stopping by 🙂
I’m drowning. There is not one person on this earth who would be enough. I’m not enough. I’ve fought for close to 15 years and I’m dead inside. Living life like an out of body experience. Like I’m watching from outside myself. My whole family is drowning and every day dies a little in a way that no one on earth would believe. There and two with complex and chronic issues that have no treatment protocol because they are not understood and when doctors don’t understand and can’t easily diagnose and treat the most common reaction is not care and concern it’s a sort of dismissive annoyance towards, guess who, the mother. Well after warrioring for more than a decade with poor results one realizes how worthless they are and even the children and spouse loose respect for the unsuccessful and disliked mother who is always fighting for answers, treatment and accommodations for their babies with absolutely no success. The saddest existence imaginable. . beaten down to the point of non existence.
I am so sorry, Sam. I know that many others can relate to how you are feeling. I do hope you will reach out and join our Facebook group so you realize that you are not alone.
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