When the Autism Super Mom Gets Depressed
There is a stigma around depression. A really, really ugly one. And I think there’s especially a stigma around mothers who have depression. If you’re depressed, you’re weak. Broken. You are medicated. You cry a lot. You sleep a lot.
This isn’t true. At least not for me.
I have a wonderful life. Two beautiful children. Three wild dogs. A wonderful and supportive partner. A beautiful home.
I’m not weak. I am strong. I am freakishly independent. And I am not broken…at least not completely. I am not medicated. And on a humorous note…I rarely sleep.
In saying all that….
My six year old son has severe, nonverbal Autism. It’s the kind of Autism that no one talks about. The kind that isolates families. The kind that doesn’t sleep. The kind that forces me to fight for every possible service and basic right. The kind that completely and utterly depletes me. The kind that is heartbreaking.
Some days I am amazed that I still have a job. I am amazed that I shower and wear makeup. I am amazed that I still smile.
I can say that I am heartbroken. I love my son more than life. He is absolutely amazing. I am sad though. He has never spoke to me. Or played a game with me. He has never pooped on the toilet. He has never dressed himself.
My life is hard. I am not complaining in anyway. Everything I say is factual.
I just came out of an extremely low few days. Sadness is not an accurate description. I would say I was depressed. Although the old saying is…’if you can ask if you’re depressed than you probably aren’t.’
It usually centers on Cooper’s health. His history involves many years of chronic ear infections and severe constipation. Cooper’s pain tolerance is so high that his pain manifests in him not sleeping, eating, and eventually hitting and aggression. If these behaviors start, it’s a puzzle to fix him. And doctors and yelling and begging. And me saying the sentence, “Quality of Life” so many times I could barf.
I have a child in pain and I can’t fix him. That’s heavy. Then add in no sleep. Teachers and therapists telling me he’s acting different. The pressure is on.
And I love him so unbelievably much.
Then I start to spiral.
I’m a ridiculously strong mother of a severely autistic child and I get so depressed that sometimes I can’t see straight. Or think straight. I push every single person away from me. I become a martyr that will save my child. And protect him.
And oh my God is that lonely. There are days when I can’t stop thinking about how I’m going to die alone caring for this boy.
As mothers, we’re supposed to be invincible. As a caregiver, it’s even harder.
I was given a battle in the form of a child. A fight that I didn’t ask for. A fight that I will fight until the day I die.
And in the process, I lost who I was and a whole lot of hope and sanity.
I believe I went a little crazy. I sat across from Cooper’s dad yesterday and apologized for being heartbroken. And for fighting this fight in this way. It’s the only way I know how to do it. And I apologized for not being strong enough. For being broken.
I’m not a doctor or a therapist. I’m not an expert in autism. I wasn’t given a special class on how to handle autism. I was thrown into it. And I’m doing the best I can. And sometimes maybe I come onto strong. Or from the wrong angle. Or maybe too aggressively. But it’s the only way I know how to be.
Caregiving for a special needs child has given me a depression I don’t want to admit is real. Because if I do, I’m showing a weakness I’m not allowed to have. In a way, I’m admitting how hard it is.
We don’t have time to be sad. We don’t have time to get help. We give so much of ourselves to these little humans and to our jobs and spouses that we couldn’t possibly take a moment to be sad.
Caregivers are seen as strong. As fighters. As invincible.
The funny part is a true caregiver doesn’t have time to seek out counseling. I’m often asked by people who truly care about me how I’m handling Cooper’s diagnosis.
I don’t have an answer.
I survive mostly. Every few days, there’s a new behavior. A new appointment. A new form to complete.
But God I am sad.
I am so sad. There are days and weeks where I’m fine. There are days and weeks where it’s hard for me to get out of bed. But thankfully I have two little boys that need me to get up.
There are times where I can’t hear another child’s voice. Countless nights where I dream of him talking. Times when I agonize over Cooper and all the things he’ll never do. Times where I will actually rip up paperwork and say F*ck it.
There are minutes where I stare at Cooper and wonder what he’s thinking. How I would do anything or give anything for him to talk to me. Engage with me.
There are times when I’m changing my almost six-year-old’s diaper and I tell myself I’m a failure. I will get poop on my hands. And poop on my floor. And more recently poop on my bedding…three nights in a row.
There are times when I need a break from Autism. And there are people who have made me feel weak because of that.
They are assholes.
There are times when I’ve blamed God. I’m so unbelievably angry that he gave me this child. What did I do to deserve this? Why me? Why my family? I am working on the God thing. I am. It’s coming along.
There are days when I break down and cry and wonder how I am going to help this kid. How am I going to know if he’s in pain? How do I get doctors and therapists to listen to me?
There are days when I blame all the family and friends who don’t help Cooper. Who don’t take the time to get to know him. They are also assholes. And that’s part of the journey. Recognizing that not everyone can be part of my autistic kid’s life.
Blah, blah, blah.
Depression is real.
Recognizing depression is good. And being a caregiver is so hard. It makes me feel invisible. I guess that’s why I write. I need someone to know what I’m doing for this little boy. Not to get a thank you or a pat on the back. I just need someone to know how hard it is to keep going every single day when all I want to do is give up.
I don’t have time for therapy. And I don’t need medication. But as a caregiver, I need to stop being so hard on myself. I need to take a break once a while. And admit when I’m heartbroken.
I admitted it yesterday to a very important person. He held my hand, told me I was doing a great job, and I immediately felt better. The weight had been lifted a little.
I’m not sure if the depression will ever go away. To be honest, I wonder if it’ll get worse as Cooper gets older.
The milestones are only getting bigger. Who knows? Only time will tell I guess.
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.
I have felt, do feel everything you are feeling. My husband feels it too. I’m sending you so many hugs. You need a girl’s day out. Get a sitter and do something for you. I know it’s not easy, but if you have anyone at all willing, do it. You need it. No judgement here, but fixing that God thing will bring you more encouragement than anyone or anything. God has a wonderful purpose for you, for Cooper, for your family. I’m following you, just started, the main reason is to offer you hope and encouragement and to tell you, you are not alone.
Tears!!! Thank you for being my thoughts on paper, I appreciate you!!!
I understand totally. And the journey will get a little easier. My son is 14 it has gotten a tad easy because i dont care what others think strangers or family when he has melt downs. I only have GOD ,my mom and stepdad who has helped me his dad abandoned him when he was diagnosed at 3. I have no other physical support. I am a college student and i work fulltime no childsupport as of march 17. Depression, anxiety,migraines and ive been ceilbate,no dating or sex of any kind since “06”. Im so lonely but i have given up all hope of ever dating. But i will still keep myself up to keep up with my soon he is also adhd,expressive speech and language delay ,global delays with autism,gi problems. hang in there your boys are beautiful and you look great despite your challenges.
Same thing for me . Crying right now because nobody understands this ????
Hi dear,
Totally cud relate n thought it was my thoughts being penned down .. somehow feel there is no help in d universe … much love to u n ur son
Reading this makes me feel so much less helpless. Nobody in my social life, or anyone really outside of my home, knows my struggle. I’m only 18, and on the path to get a college degree so I can maintain myself and my family.
I have a autistic baby brother that I take care of during all hours except school. My brother is 5yrs old right now, and has been developing a worse and worse attitude and lack of composure. He’s verbal luckily, but the conversations we have are hopeless arguments where usually, I am trying to calm him down from his fits.
Some days are just very difficult…. Today is definitely one of them. I just want him to end up okay. I don’t want to see him grow up into a world that can’t accept him, and a world that he can’t function in.
I just don’t know what else I could give him, or do for him to help him become a normal child. This is all happening while I’m trying to become a “real” adult. It’s very difficult. But I find comfort in knowing I’m not the only one trying to figure this life out.
Thank you for writing this.
– Will S.
Thank you for this. Depression is real. Know that you are so strong. I get through a lot of my days telling myself that God gave these children to me instead of another mommy because he knew I was strong enough to do this. Every. Day. Not easily, not without depression, and often not without wine – but doing it. I don’t think the majority of moms of typical children understand the isolation – the feelings of having all eyes on your child- the heartbreak- the so unbelievably tired.
Tired of the therapists, tired of constantly searching for what your child needs, tired of experimental diets, rewards charts. Sensory everything, the looks from other moms, the friends who don’t ever know quiet what to say and feign interest, tired of paying unreasonable amounts for another quack who has all the answers, tired of juggling insurance hoora and endless forms that lead nowhere and end up not cover anything. tired of the meltdowns, tired of crying for their uncertain future, tired of mourning the typical vacations and school days that will never happen – just so damn tired.
Thank you I’m having such a bad day today and it always makes me feel guilty that I feel this way but you made me feel less alone ❤️
I get it. I felt like I was reading a part of my life in this(the depression).
Although I come from a totally different perspective as I have a medically complex child the end result is the same. Nobody can ever understand it unless they have lived it. It’s the loneliest existence in the world. If you ever want to chat, vent, anything please reach out to me. Because I understand.
My little girl who is 12, has had everything taken from her. She’s got a rare disorder that we have to travel 750 miles to see her specialists. She had brain surgery and spent almost two months on hospital with complications. Because she is no longer able to do the things she could everyone has abandoned her as a friend. God has a plan for our kids. I hold on to that hope. Praying for you and Cooper. I’m always hear to listen.
I am going through this as I read this and you are so right. My daughter is amazing and I love her with every ounce of my being. At times I cry myself to sleep because I cant do enough for her and I feel like the most horrible mother in the entire world. And the very next morning I push it all away and fight another day.
Thank you, thank you so much. Struggling to support my daughter with a three year old non- verbal autistic child and I am floundering really, but so grateful for your honesty and truth. The road ahead is so rocky, I know, but I feel empowered by your bravery and compassion.
I love that you share your story and that you are so raw and real. There is nothing quite so heartbreaking and isolating as feeling like no one understands. Your blog will help so many Moms. When I watched your video where you share your experience with the angry parents who yelled at you in the special needs park, my heart ached for you …and for me…and for all Mothers who have felt despair over a situation with their kids, and at the same time I felt connected – a kinship if you will, with my fellow Moms who passionately and fiercely love, nurture & protect our kids, then worry that it’s not enough. The Lord is close to the broken-hearted and saves those crushed in spirit.
I so appreciate your honesty. I can relate as I also have a child with autism. I will say that the best thing for me was to seek therapy. I only see a therapist once a month or so. But, it has changed my viewpoint and lifted me from a dark place. I always said that I had no time to see a therapist and that I needed to prioritize my son’s appointments but then my husband’s job allowed him to come home early a couple days per week, giving me a window of time. I encourage you to find an hour per month to talk to a professional. I still spiral at times but not as frequently. It can also take a few tries before you find the right therapist. I also play(ed) the martyr but making my needs a priority has only benefited my familly. It’s hard to explain but I think you should make yourself a priority. It’s the only way to sustain this effort over time.
I too have a son with ASD. I stumbled across your story by accident. I have been really sad, alone and just isolating. I am trying to do everything I can within my day and power for my son. I do feel nobody understands, and that the heartbreak can be so overwhelming! I get to the jumping off point in my mind at night late.
Being mom consumes me.
Thank you for sharing
Thank you thank you for this article on depression!! Tonight my dear you just saved my life … I am forever grateful to you! It is so hard, to know it is someone else out there feeling this way I am able to cope . Thank you for being brace enough to share .
Thank you so much for sharing your story and being honest about your feelings. Raising a child with autism is so hard…my daughter is almost 5 and the struggle and depression is real. Some days I don’t know if I can do it anymore..I feel alone..no one understands what I go through . Everyone I know has “typical” children ..all enjoying their typical lives..going on vacation, spending time as a family and here I am living in a big therapy session…just struggling to get my daughter to look at me. Seems so unfair. Thanks for sharing your story and allowing me to vent. Sending big hugs..let’s hope it gets a little easier for us!
I have a feeling you came upon this story NOT by accident. 😉 ?
I definitely relate!!! I have a 13yo son with autism, ADHD, Tourette’s. I have battled anxiety, depression, OCD all of my life. Once my son came along my mental health issues magnified. Staying busy, medication, physical activity, a relationship with God all help me get through this journey. Some days are definitely better than others. I truly 100% adore my son despite his problems. He has taught me so much about love, acceptance, patience, advocating for what’s fair. Thank you for sharing this article. It lets me know that there are others going through almost the very same things I do – feeling like I’m a failure, wondering if I’m doing enough and everything I can for my son, depressed, mentally and physically exhausted, neglectful of myself, etc. Please please please try to find some “me” time for yourself. How will you take care of him if you continue to neglect yourself? You have to stay healthy for him. If you ever want to chat, please feel free to email me.
Kate, you are a strong person and you are not alone. Your reaction to your situation is normal, but people don’t usually talk about it. As a fellow autism mom, I appreciate that you do because of all the other people who feel alone in our life struggles. PLEASE see a therapist! It will be helpful to be able to vent to a professional and maybe get their perspective. In my work, I see many people who feel down due to life’s stresses. Counseling really helps a lot of them keep from worsening and it helps them feel better. People are not meant to be isolated from one another but modern society means we don’t all live near family and friends and we don’t all feel responsibility over our neighbors like we used to. You should at least be able to talk to someone in person if you find a counselor.
Thanks for being so honest and transparent. I needed to know that i wasn’t alone and I hope you know you aren’t either. Blessings and hugs from a fellow autism mama
Yes, yes, yes.
Reading your words is like hearing my self-talk. Except you are ahead of me in your self-awareness. When ‘my Cooper’ Julius was six I was more confused than you are. So in that way I must say you are doing GREAT. A different kind of great in a different kind of world. But still very respectful stuff.
My Julius is now 15.5 years old and despite our (mine and in the last few years his stepdad’s) extreme dedication and effort he has now been placed in the care of a disability support organisation . We visit him three times a week, Skype every day… and still try to be strong every day… and cry every day… and despair ‘why can’t the psychologist get it ?!?’…
it is a very tough journey but we DO grow through it more than our peers typically grow through their somewhat ‘easier’ parenthoods. They wouldn’t like hearing this but you and I know what I’m talking about 😉
I remember being most impressed by a documentary on autism called ‘Extreme Love’. That’s what we feel. That’s what we give. And in glimpses that’s what we see in our boy’s eyes.
Do continue to be strong, even when, if you are like me, you wish you could be allowed to be weak. Just for a few days.
Much love and best wishes to you and your family from Tasmania, Australia
I am not as strong as you are.
I have 2 sons ages 3 (non verbal) and 5 (only repeats words). I’m breaking apart at the seams. I do need help. I do need medication. Although I have yet to seek it out.
As I’m loosing my shit completely to day, I reach for my phone to Google “Autism and depression” or something of the like…and I stumble upon this.
Thank you for your honesty. Thank you for sharing a part of your life. I think reading this has helped me realize how much stronger I need to be.
I am completely without words. I am a single mom dealing with my son having autism. It’s very hard when teachers or family keep asking does he have a problem, or is it something wrong with him. I can’t count how many times I have cried because none of my siblings kids have any disabilities.A lot of them don’t understand and I’m tired of explaining especially if I’m not done healing from this. None of them can relate or help. My son also can speak about 5 words and that’s it, I barely heard him say mom, it been about two years. I don’t know what he’s thinking. Is he happy with me or sad I just don’t know. Im still trying to seek more help for him. While he have autism, I don’t trust no one with him, so having a hard is hard or even a social life. I’m so happy I came across your post.
My son is on the Autism Spectrum. I get the depression thing. I like you am not on meds, my sleep is messed up, and trying to figure out how to help my son consumes my life. I get jealous of parents that complain about their children’s mild behavior issues. I always think that they couldn’t survive one day in my shoes. I love my son deeply, but I too get depressed. I get overwhelmed. I feel guilty because I think I am not doing enough. I look at him sometimes when he sleeps, and I cry. All I can think is how can I help him. What can I do? How does this get better? I read countless books, we are on a specialized diet that consumes my day with cooking, we attend music therapy, and I am always feeling bad because it is not enough. I can’t express to you how much it hurts, but I don’t need to express it to you. You get it. I have made peace with God. We talk every day. Talk to Him. It will help. It is okay to tell Him you are angry. It is okay. God bless you. Lord Jesus I pray for Cooper may you help him, and help his amazing mom. Lord help my son too. Please help my son to be healed. You are not alone, and neither am I. Thank you for sharing your life and struggles.
I feel the same I’m tied so tied .I got 4 half year old with altisic .and a 1 half year old .I feel like a prisoner in my own home can’t go out unless my mum’s with me .I love my kids so much but I hate this life .I wish god didn’t give me this life .I’m tied !!@
You are describing me, thank you for putting how I feel in written words..
i recently found your blog, you have a beautiful son and family and your are a great mom, your love for cooper and your family shines through his smile and your writings.
I too have an autistic boy, he’s 5 plus, minimally verbal mainly in the forms of echolalia, doesn’t say mom yet, still in pull ups too, we are working in potty training with small but huge progress.
Thank you and keep writing for all of us ❤️
What I just read could have been written by me. I was diagnosed with major depressive disorder, and I have so many of my own demons to fight like I’m still struggling to heal from those bullies who made my life hell in high school. Fast forward to now with my mildly autistic son with severe ADHD which makes that combination complex. He will be 14 soon. He is verbal and speaks in sentences, he goes to the bathroom on his own, and dresses himself. But last September I had no choice but to move him to a residential school without him coming back. He is getting the best help as it is in order that maximize his potential. Services are impossible to get. He was stagnating. We spend thousands of dollars on therapy for years that did nothing. My already severe mental health was declining. I have a typical daughter who needs me too by the way. I feared psychosis or something of it. I knew snapping was on the horizon so he had to go before anything happened. My life is calm now. I gained over 100 lbs over the years of caring for him and I was getting heartburn sleep apnea and hated how I looked. I have now lost a good 20 alone and will keep going and those issues are gone just from that alone. I see him for a few hours once a week. he is so happy and is doing well. And if you have to make a difficult decision to do something like this as he gets older and needs anything that can not possibly give them there is that option. Coppers needs will be met. Your needs will be met because you can take care of yourself and I can fully be there for my daughter. I know you have a typical son as well. You deserve to have your own life because you need it. No one has the right to judge you if you end up having to do what I did. We ALL have our limits!
Where did u take your son where u only see him once a week ? Do u feel comfortable leaving him wherever it is for him to get better ? Does he like it ?
I am so alone in this. I hurt for the same reasons as the words you wrote. My husband is unsupportive. Instead I am provided judgments and some responsibility. I have no family that I want included because of substance abuse issues. My son is struggling and my hurt is a crumbling factor in my stregenth. I am so sad, angry with those that look and dare to try and parent my son. I am so tired and drained of not being able to work. How can I when my child is not able to tell me if something was wrong or had happened. Doctors referrals are a huge mess as they don’t communicate and are seperate entities.
I wake up many days ok and just surviving. Some days I wish to not be here anymore. I get angry at myself and pray for help. It’s overwhelming. It’s hurting me so much and literally I give give give to keep the family together.
You are only human. Moms cannot cure autism, but love does wonders. Let friends, counselors, esp. teachers……help……lean on them. It’s OK. I have leaned on helpful teachers, and now one is my son’s respite care. Don’t even think of giving up. Just give out a little grief or let yourself cry….then pamper yourself. You are a beautiful person. I turn to Psalms 23 and Phillipians 4 when I need God to help me. You can do this, and you get wiser with each passing year. God bless. I give you a hug right now. Jane
Thanks for being so honest. It takes super strength to do the best we can for our kiddos during the times when it’s emotionally excruciating to carry on. I’m a single mom to 6, 8, and 9 year old kids who are all on the spectrum. It’s a shit show some days. Cheers to you for fighting the good fight.
I stumbl
Wow. So powerful. This brought me to tears because I can relate. You are amazing. Thank you so much for sharing.
Omg I totally feel everything you wrote. It’s so hopeless at times. I wish I could be there for Cooper and you for my little boy Jake. Jake is 3 yo and we are doing everything we can to help him but not seeing much progress especially the language and following instructions part. Not sure about your husband but mine is quite annoying to say the least. With Jake’s situation plus our other 1 yo son he would still spend a lot of time in the bathroom or on his phone or would come home late from work often. I don’t know I feel so overwhelmed and hopeless about Jake’s condition at times. I love him so much so it hurts deeply. I at times feel suicidal, want to leave my husband, or simply have an affair just to get back at life. But of course I’d not do none of that because I love my kids so much. But still I feel irritable, hopeless, and suicidal at times. Hang in there with me’ let’s keep fighting this battle with faith in God, love for our children, and compassion on ourselves first and for most. Love you and your boys mamma!
Hi sorry for your troubles i just have an idea that works for myself when required for one of your problems – enemas – it all comes out where and when you decide. Actually sounds gross but cleaner once you get the hang of it. Hope this could help a little.
Sorry kids have to sit still for that!! I hadn’t thought much
I have been in various states of depression over my ASD son also. I do have respite care, get counseling, and take medication. I go after every state and federal funded program for him in my state. I know how it feels…..the envy of other friend’s children, and the loneliness and the worrying over their future is debilitating. Support groups exist for depression and for special needs moms. You have to force yourself to care about you too. Thankyou for your honesty. It has helped me realize how garden this life can be. But, the autistic are honest, sweet, loving individuals. In a lot of ways, I prefer my son’s personality to many cruel boys his age. There must be a place in this world and people’s hearts for the autistic. Keep the hope and the love for him, and you can’t go wrong. Much love to you, Jane.
Sorry for the typo’s ……..how hard this life……not how garden this life!