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!
I’m right here with all of you. Severely autistic 9 year old plus two younger ones (what was I thinking having more kids). Because of how Medicaid works or doesn’t work in my state, our option to get therapy for our son was to divorce so we could income-qualify or re-enlist in the military so the federal government would pay for it. We chose to re-enlist. But honestly I feel too old for this lifestyle. The moving process has been extremely stressful, we still have an empty house to sell, and the endless amounts of intake forms, evaluations, and appointments we went through for his initial diagnosis have only started over again. I’m overwhelmed. I’m depressed. I have to see a counselor because I’m losing it. All of my kids will have to come with me to that appointment and I’m dreading it. Taking these screaming, crying, out of control kids into a military building full of uniformed personnel is so embarrassing, but I need medication before I drive off a cliff.
Thank you for echoing my feelings and experiences here. It helps to know I’m not alone
Thank you for this. I needed to read it today. We finally went for testing today and while he may get the help he needs, the preschool he currently attends may no longer allow him to attend because they personally do not provide them. After months of therapy and finally getting him to a point that resembles being potty trained, I now face him losing this routine he has come to love and enjoy. I know that there are others who have it so much harder than what we do, but I’ve allowed myself tonight to cry and be annoyed. Tomorrow I will wake up and continue to do what I have done for nearly 5 years: give my child 100%.
You’ve done your life’s work with this article alone, let alone the behemoth efforts for your son and family. It’s really touched me and I know I am not alone.
Supremely appreciative of your honest, well written feelings. I am the parent of a 6 year old boy with autism and 10 year old girl with down syndrome. I have felt everything you described….and I so get the poop thing. Love the irony of the people who need therapy not having time for therapy. That is so true for every special needs mom! Love your writing. Please keep writing!
Very relatable for me too. Blah.
Thank you for sharing your hardship and helping others to consider how hard it is to raise a child with special needs! Been batteling with depression from it…
You are wonderful. You are doing the very best that you can, that’s all we can do. Cooper knows it, it though he may not be able to verbalise it. No one can really appreciate the struggle apart from other parents of ASD children. I have read hundreds of articles about coping with autism and yours is by far the one that has resonated with me the most. Sometimes I go to bed thinking I can’t take anymore, but then I get up the next day and do it all again. I blamed God too. Keep your head held high and recognise that you are a fantastic Mum to your boys and I know that you will keep on going, even through the toughest days. We are all with you.
My heart is heavy reading your words. Thoughts I won’t allow myself to think, but feelings all too familiar.
In this moment, you are a voice for many Mamas of Autism. ❤️
This article echoes my sentiments. Thank you for sharing. Past few days haven’t been easy. Reading this brought tears to me and somehow I felt a little better after that.
I’m in tears you described my pain said my words of my struggle with my son. I feel so alone with dealing with his autism. Thank you for writing this I know I’m not alone.
I wish all of us mothers in the comment section can have a girls’ day out.. My heart is aching while reading your blog, it is exactly what I’m feeling. My son has got severe autism based on CARS rating scale. Sleepless nights, and exhaustion throughout the day took all of my enthusiasm for life. I come from a country with very little support for kids with autism. I am socially isolated now, I cant even start narrating my story to friends who dont understand what autism really is.
Anyway, I just want to say, I love you all. You are all beautiful. Perhaps, we can all come together and just smile and be happy amidst our depression. Take care.
Oh my goodness! I feel like I’m reading something I wrote myself, except that my 5 year boys name is Jagger, and he does poop in the toilet! You’ve explained the intense, unceasing love and the incredible overwhelming guilt/shame that I try to fight constantly! I am starting a business growing organic vegies for income and for Jagger’s future career. I broke my spine a year ago and can’t go back to work as a nurse yet (if ever). Although the market garden has given me hope and something to strive for, I am ofcourse, even more overwhelmed! I also have a 23 y o son with moderate/severe brain damage who lives in his own place but often needs help, a severely adhd 14 y o boy, a faetal alcohol syndrome 12 y o foster daughter (had for 6 years), and a high achieving 13 y o girl who probably doesn’t get the attention she deserves. I have also been diagnosed with adhd and depression. My father says I’m ruining my children’s life with my anger, yet he is a bully. One of my sisters hasn’t spoken to me in over ten years because I wrote her an angry email and the rest of my siblings seem cold/distant/disinterested Or judgemental. I try not to cultivate friendships because I have so very little to give. I am a single parent but have a wonderful partner who craves my attention and happiness. Just like everyone here, I am doing my very best! In fact considering everything, I’m doing really amazingly!……so why do I feel so sad, hopeless, overwhelmed, lonely, misunderstood, vulnerable, ugly, and like I’m failing at everything? And why am I the one complaining about life when it’s me and my body that caused Jagger to suffer autism and thyson to have adhd?? Are we genetically flawed? Should I feel bad that we are using government funds to help? Should I feel bad for being a drain on the system? Or should I realise that my children and I are valuable members of society and can have a fulfilling and productive life while contributing to society??
I do know the answers…. The only way is to keep going….Jagger is more deserving of happiness, and is generally happy. He has much to offer society, as do my other children, as do I. It’s just hard sometimes to see Jagger as the amazing spirit that he is, and not see him as someone who is disabled.
Thank you. This is just what I needed to read. This is how I feel. Every. Single. DAY!!! My 5 year old daughter is completely non verbal and oh how I dream of her voice. Here’s praying Cooper and my girl find theirs x
THANK YOU! There is most definitely comfort in knowing we’re not alone! I, too, have a severely autistic, nonverbal 5 yo boy (who doesn’t poop in the toilet nor does he show any interest OR even acknowledge that he’s ALREADY poopy). Oy. Some days I wonder if it’ll ever click with him. The lights are always on, but not always is someone home. It’s almost as if I’m trying to communicate with an alien from another planet. Zero comprehension. It’s such a lonely existence. I do feel blessed as my older brother is mentally handicapped, so my mother is someone who I can vent to & lean on (& vice versa). Having a network of others who can relate to one another is such a HUGE BLESSING. We’re truly not alone in our feelings of hopelessness, frustration, depression (sometimes suicidal thoughts), anger, jealousy of “typical” children, etc etc etc… thank God we have eachother & can share our stories so that others can find comfort in knowing, that they too, are not alone. God bless you & your beautiful family & God bless to every ASD mom who is reading this. May God give us the strength, patience & wisdom to raise our kiddos to reach their full potential. So super important to take care of YOU, as well. A friend once told me something that I’ll never forget, “take care of #1 so you don’t step in #2”. There’s so much truth in that. If we don’t take care of ourselves there’s no way we can effectively take care of others. I love you mommas! God bless. X
As I sit trying to find something online to relate with, I have found it. Sending hugs. Today is a hard day, and nobody understands completely, except another mom with a child with autism!
I have a child with ASD. Pkease, please, please look into biomedical treatment for him. Our kids are physically sick and the combination of those symptoms is what causes the behaviors. There’s no guarantee everything will get better but I think it’s worth a try.
I just found out my child is autistic and this is exactly what I have been feeling.
I relate so much to this article I have a daughter with severe autism who’s 8 years old thanks again for writing this it made me feel better
I searched for an article tonight to help me feel better. My depression has gotten the best of me and I feel like I can’t take one more day of winter, inside with this 2 year old. He probably thinks the same about me. You have inspired me, broke my heart for you and Cooper. No one ever prepares us for how hard this is. Karson is my 2 1/2 year old, autistic grandson. He lives with my husband and I. He is not completely nonverbal but has a hard time communicating because his speech is way behind. He is full of energy and love. I’m not old but never thought I’d be raising a toddler at 45. I have a chronic inllness and MS. I’m tired, and hurt much of the time. However, I know that we are the only ones who can or will give him the attention he needs. You see, my son is Karson’s dad and works a very full time job. Karson’s mom left when he was not quite 1. She was never emotionally or completely physically there for him. She has her own issues and now has a 9 month old baby. I went to help her when Karson was born, thinking I would be there for 2-3 weeks. She had a c-section and then got hooked on the pain meds which my son and I took away from her. She didn’t want to get up with him, she had no confidence and no will. Weeks turned into months and months to now years of caring for him. My son was a great father and husband, but when she left she broke his heart. He became emotionally detached from Karson. I think he was depressed too. Then he might his current wife, she had no plans of being a mom or a stepmom. They now have a child together and another on the way. Karson gets left out. Granted he’s a lot to handle sometimes but he still deserves his entire family. I get anxious and depressed trying to figure out whether I should tell all of them to step up or not. I don’t want Karson to feel
Like he’s a burden. But I need a break at times. I know you can identify. You just need a mental health break before you explode. I wish they would recognize that. They don’t have a clue how hard it is with a child who doesn’t sleep well, barely eats and bounces of the walls at times. So, I have to tell you thank you for taking the time that I know you don’t have to write this blog and inspire others to keep fighting the good fight. I pray that we will make it all worth while. God Bless You and your Family.
Thank you for this. It sums up how I am feeling at this very moment. This morning I cried in front of my husband because I am at my breaking point. I don’t cry in front of anyone especially my husband since he is going through this too. He has enough to worry about but today has been bad. Full of anxiety and meltdowns.
I *needed* to read this. I needed to know I’m not alone in these feelings and the spiral I sometimes feel but keep buried. Thank you so much.
I am so sad today, I feel for you .
Thank you for your bravery and kindness in writing this article.
I’m there too and am always being told “I wish I could do more” and that hurts when they really don’t, but say this meaning they aren’t going to be there.
To then get an email with an article of a single mother with 5 kids and the message, “see, you can do it”
I have 0 support, and have no friends.
I find myself jealous of people who aren’t affected by this and get soo much help.
And the feelings make you look crazy if you dare talk about it loneliness is brutal
I understand the pain of the silence
Thank you
Your words and thoughts and feelings are exactly the same as mine. Thank you for expressing all of these scary emotions and sad feelings so eloquently. Reading this post made me feel understood, validated, and much less lonely than I’ve felt in a while. Hang in there, and I will, too!
I can’t hold back the tears from my eyes… This exactly is what I’m experiencing right now. This speaks about me and my son with severe Autism Spectrum Disorder. You’re not alone on this journey. May God always bless you and your son.
I’m living your parallel life… I found your blog when I googled, “autistic son upset all the time”. Thank you for making me feel like if you can do this, I can do this. Somehow knowing that others are surviving makes me feel a little less alone in this world…
It’s both sad and a relief to know I’m not the only one. Hang in there Autism Mommas.
Thank you for writing this. It brought me to tears and I love you for that. It gets lonely in our world sometimes. Knowing I’m not the only one means so much to me.
That’s how i’m feeling right now. I’m broken. I know I would never commit suicide but some days all I can think is about dying. I feel like a failure. I cant relate to any other moms either.
Mari, I just realized that you are the reason that this article came up when I Googled “Autism parents suicide”. Just like you, I know in my heart that I would never actually take my own life, for many reasons, but on nights like tonight, when things are hard, and I feel so sad and alone, all I can think about is how much I hate life. Some days I feel grateful to God for my life, but I am just so tired of living it the way that it is. It feels like a punishment. I have two kids with autism and one with severe ADHD. I’m divorced from a man who doesn’t help with our kids at all (other than financially) and hasn’t even seen them in 5 years. We are the only ones who truly understand what we go though. God bless you, and every other Mom here who has ever felt this pain…
Kate, I wish you’d post specifically about the relationship with God issue. I feel like I’ve lost mine as well. I’m divorced and destitute and my son is much like Cooper. Why me? Why him? I feel like life is just a punishment because there is something inherently bad about me. God wants me to suffer, and life is just waiting out the clock until it can be over. I don’t know how to get past it. I wish you’d talk about how you’ve done it.
Hi Lauren, Thank you so much for reaching out. It’s funny you should post this comment today. We actually just joined a new church and I told the Pastor I need to have a one-to-one session and ask all of my questions. I need to understand why. And how not to be angry. I’m going to tell him how for years I was so mad at God. He told me that my thoughts and questions are all normal. He hears them often from parents like me. Trust me when I say, you will get past this. I promise.
You have well portrayed it of a mom’s feelings and needs with a special needs kid. Thank you for writing. All the love and strength.
That’s the story of my life ,we are living in constant pain.
Recently I joined the online program called Son-Rise program at Autism Treatment Center of America. This is a good program especially for nonverbal. I have a high functioning son. Their program is understandable and has real benefits. It costs $600 but is worth every penny. You may see drastic improvement in 9 months.
The sonrise program being 600.00 – is it mailed to you?
i think your blog is one of my favorites because I see so much of myself in you. I have held up for years now without medication, but my 1 glass of wine or 2 started to be an entire bottle. My husband and I are now expecting our third and I’ve decided that when the baby is born I will no longer drink after a hard day. I am going to give medication a shot. I don’t think meds means admitting defeat, it’s just -for some- a necessary step for living your best life and being your best self for your kids and I can’t wait to give birth so I can give it a fair shot. I read a book recently called “The Day My Son and I were Born” and the author desribed her depression and her reluctancy to try medication. By the end of the book she gave it a try and the way her life turned around inspired me.
I loved reading this. I have my own child who struggles. You are strong – and you can handle this. You are not alone. There are many of us who struggle with our non conforming kiddos. Thank you for your beautiful words – and your story. You are beautiful.
Hi Kate…. I just read your post about depression and I can definitely relate to it. First of all, I want to say that you’re an excellent writer! 🙂 Your posts are a blessing to those of us who are experiencing the pain of having an autistic child (or grandchild, as in my case).
My 3.5 year old grandson Daniel is also non-verbal and was recently diagnosed with severe autism and ADD. I am his GA GA grandma who would literally die for him tomorrow if it would cure his autism. I’m not kidding….that’s how much love I have for him.
I too suffer with bouts of depression because it’s like having to accept the death of a future that I dreamed for my grandson. When he was born, I immediately opened a 529 College Savings Account for him but recently, I concluded that I am kidding myself and will no longer deposit money in it.
When I’m depressed, I eat and have gained 5 lbs in the last week. I too have cried myself to sleep. It’s not fair and is cruel. However, I do want to mention that Daniel constantly has a smile on his face and is a very happy little boy. If he can be happy, then I should do the same, right?
Kim
Thank you for sharing your experience! I am autistic and so is my son. Our sensory issues clash all day long. By the afternoon I am so drained and defeated. I love him to pieces but every single day, almost every single activity is a challenge. I can’t go anywhere with him alone because if he has a meltdown I cannot carry him and keep him and myself from getting hurt. He hits out 1 year old all day long. My husband can only work weekends because he’s the only one who can physically handle him. I feel like a failure because I struggle so much with his screaming all day and hitting, his ignoring me. It’s just really hard. I’ve been feeling very isolated and your post helped me feel less alone.
I read this and thought of my wonderful wife. Our 4 year old son is in the process of being diagnosed with what we think is autism, though we are not really sure what is going on with him. My wonderful wife takes care of our son each and every day. I have a question for you. What would make the most impact on cheering her up? She is very depressed and I want to help any way I can. I help with the day to day stuff when I get off work but I just want to help fight off the depression beast. Any suggestions? Any advice will help.
Thanks,
Phil G.
Thank you so much for writing this article. I felt so alone today, with so much emptiness and reading this gives me strength and lifts me up. We too have an autistic boy, even though he’s non-verbal, he’s able to keep himself busy and out of trouble most of the day, he can dress himself, ride a bike, but can’t tell me what he thinks, and even more heartbreaking, I don’t think he actually wants to tell me what he thinks. I kept thinking that this is going to get better, and it does so incrementally slow. He’s 12 and somewhere between a non-verbal 2-3 year old. He developed all his milestones early, walked when 10 months, old, spoke single words, and even sang songs, until 2 years old, regressed into autism, (suspect: vaccines) have video of him talking and engaging with us, playing with us; In so many ways we are lucky as it always could be worse. This is normal for us now, our family will never be a typical family ever. We learned to love him for the way he is, but we are so sad to loss of the potential had he been a typical child. We feel that we are strong but definitely loosing strength. We’ve heard so many promises that with this he could better with that worse, so we tried it all. Nothing but clean diet and engagement with him worked much.
Dear Cooper’s Momma,
My ASD kid is higher functioning but suffers from psychiatric issues due to PANDAS. Because of the Autism label doctors and insurance continue to deny him treatments he needs, like IVIG. He has gut issues and his autoimmune attacks cause rage, aggression, anxiety, depression, threats of suicide, and in the past he has been psychotic at times. I know none of this can compare to the difficulty of raising a severely autistic child. I have a good friend with a higher functioning ASD kid and a lower functioning one. Her struggles with the lower functioning one are like nuclear warfare type situations, so scary, sad, sometimes so violent and there is so much fingerpointing and blame and she has to YELL and demand to get him proper medical treatment. Please find a doctor who can figure out Cooper’s puzzle piece- why he keeps getting ear infections and constipation. Often if you can treat the medical conditions in Autism it actually leads to some improvements in behaviors, skills and sometimes speech. We found chronic infections in my ASD kiddo and treating those helped increase his behavior, social skills, ADHD symptoms and overall health. He is now in high school in the Autism program with an aide and has friends he eats lunch with. In first grade when he couldn’t seem to figure out playing with other kids I would never have thought that is possible.
Another thing to consider is looking at genetic testing, like a whole exome test. Medical technology is discovering some severely ASD kids actually have genetic syndromes that are similar but seperate and that’s causing all their symptoms and delays. There are some medicines in the pipeline for some of these. With my kiddo we found out he has mitochondrial mutations and so giving him certain supplements and vitamins that help with that is working well. I should mention my other son has PANDAS, the autoimmune condition, but not ASD. I kept trying to figure out why. Now we know.
Love Cooper right now like you are- you are amazing. We must always love our kids, but keep digging. Everybody should find out why their child has developed Autism, or why they have some of the underlying health issues they do. We likely won’t cure Autism, but this can help us find effective treatments that help and increase their quality of life.
My son is 13 yrs. old in less than 2 months. He is a beautiful person but he was born w/Down Syndrome. It affects every single thing about him, his developement, his health, mind and his physical body. He can talk but he can’t really communicate…his thoughts, his feelings, his pain, his anger. Anger makes him hurt himself, pain or emotion make him hurt himself. Hitting, pinching, scratching, bitting himself. He knows every part of the routine about using the bathroom but he is still in diapers, seeming unable to control blader or bowel. I was burning out when he was 5 &6…. my marriage feels to be hanging by a thread – for the past 3 years or so. Deppression, anxiety, hopelessness, fear & exaustion landed me in hospital last Nov. for a week. I have new meds. out of that. Friends and extra help rallied for a while but that can’t last ! Life goes on – for everyone ! I’m alone again, managing behaviour, trying to feed, cleaning the poop from bumb crack, scrotum & almost teen penis – wearing my blue gloves, holding the adult wipe I never dreamed I’d be holding !!! We started working on the alphabet at 1&1/2 yrs.thought we had it there by grade 4 ?!! Just finished grade 6, still come & go. No family to lean on. So so so tired. Lonely. But maybe now, not so all alone. Ty❣️
I’m in this dark place tonight. I needed to read this. I needed to see that my thoughts are, also, someone else’s words. Thank you so so very much.
I found your blog today after a particularly rough night….you see my son is 27 and I’m 51 and so I’ve been doing this a reeeeaaaallllllly long time now…..after a huge meltdown of him slamming his fists into things and telling me to f*ck off; which pushed me off the deep end……I found myself fighting tears thinking “oh my God….I can’t keep doing this alone until I die!” I have lots of friends, but none who really understand this life I live or how I feel somedays. Today I found myself seeking out others, and here I see so many parents feeling just like me. Thank you for expressing your feelings and making a place where others can also. If anyone knows of an online support group where parents can just connect to one another – let me know!
Thank you for committing to writing the truth many parents are too scared to admit to themselves, let alone others. I can totally relate as we too have a severely autistic son who is non verbal, has many challenges (including suspected ADHD, SPD, poor sleep and violent tendencies) and has pushes me to the brink regularly. Help from those who know him is sparse and unless you live it day to day, you will never understand it completely.
Keep fighting the good fight super mamma.
I honestly dread the future . I don’t know how it will turn out for my autistic son. But I trust that God is and will always be with us as we bring up our son.
There are some days where I say and ask many of the same things you have done here, and I feel a sense of guilt for doing so. Thank you for helping me to NOT feel alone. I am a single, divorced Mom of an autistic little guy, and I push everyday…..the struggle is REAL. I take any positive and healthy support I can get, once I get over the fear of reaching out for being judged as weak. Thank you!
I read your story and understand completely. I’m a single mom of 5 1/2 nonverbalal boy. I understand your depression, yoyr sadnesd for wondering what is he thinking or feeling. What I too wouldn’t give to hear my son’s voice, connect for playing. I’m inspired by you that you won’t give up and fight for your son to give him the best you can. I do all of those things but I like to know I’m not alone with all that you described. ?
Yes. I have written about special needs parent depression as well. It is a real and challenging issue that is not spoken about often enough. I find that knowing I’m not alone helps a tiny bit. But it is still a struggle. Sometimes I feel every emotion of grieving all in one day. Thanks for sharing and being real.
Thankyou so much for writing this so well. You have literally just saved my life, now I will go to sleep and try again tomorrow.
Thank you for this post. I Googled ‘depressed autism moms’ while having a very low moment. I feel like I just read my journal. I too have a severe non verbal son on the spectrum, who is my heart, but requires all my energy. I feel like I just read my journal. My family has also become isolated. I to am depressed, but medicated. I don’t know how you do it without medication. When I tell people “I didn’t have to clean up poop today, so it’s a good day” I get an uncertain look from them in response. I get anxiety when I think my son is starting to get sick. Nothing worse than a non verbal kid who can’t tell you what’s wrong, and going to the docs where the nurse can barely get a temp reading or weight from my son. It’s nice to know that somewhere out there someone else is also going through what I go though on a daily basis, have the same thoughts about worries, and I’m not alone in my personal struggles. You are not alone, and I am not alone. You are doing a phenomenal job of being a caretaker and advocate for your son, and so am I. Today I took a shower and put on makeup…
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Thank you for sharing! My heart goes out to you <3 I have very good news for you though...there is a cure for autism! Check out "Gut and Psychology Syndrome" by Natasha Campbell-McBride. I would even be willing to give you the book for free - I believe it would help you a lot 🙂
Thank you for sharing! My heart goes out to you <3 There is good news / hope for you tho...there seems to be a cure for autism! Check out "Gut and Psychology Syndrome" by Natasha Campbell-McBride. I would even be willing to give you the book for free 🙂 It would help you a lot!
Hi Kate – you are a wonderful writer. You put into words how I feel, and how I’m sure so many parents of kids with autism feel. I took a bad dive 2 years ago, started drinking and didn’t stop until I realized drinking wasn’t a ‘therapy’. My tipping point was when my son turned 21, was done with school, and suddenly had nothing to do…oh, people who are supposed to be the experts will tell you there are things for your adult child to do, and you look and look, but little to nothing surfaces. No one answers your calls. State depts are notoriously uninterested, and usually unreachable. Other parents in the same situation are just like the other survivors in your lifeboat…we all cling together but don’t know what to do. Depression became my normal. I would love to write for you, but it wouldn’t be pretty. It doesn’t get easier – it changes, but you can never stop being there, right there for your child or your adult child. The best part for me has been my strong friendships with other moms -and the humor we share that we know no-one else could understand. Those are my go-to peeps. They laugh with me, and don’t look away when I cry.
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I can relate a lot to this. It is nice to know I am not alone, but I am still depressed even now. I do feel guilt for it and do feel i am a burden to those around me when i am down and exhausted from the depression. I try to fake a smile, but it is hard because the heartbreak is real. My child unlike yours can say basic words. However, he has little understanding of spoken words towards him and does not like to talk unless being prompted to and often can only say a sentence comprised of 1 or 2 word that may or may not be what he is trying to express. He spends 60-80% of his time just stimming and inside of his own world, instead of playing or interacting with the world and people around him and he has not been able to learn anything past that of a 2 year old. He is 4. He also has physical issues, lacking strength to even stand on one foot, jump without falling over for any length of time or even peddle a trike made for toddlers. All together all of his issues leave me feeling like a failure, without any hope. My husband feels the same and offers little to no support as i feel he resents me greatly for having an autistic child, telling me often how he should have never let me talk him into having a kid. To make matters worse, we have a 2nd on the way that was an accident due in a month from now. There is no joy or excitement for it, as both of us fear it will be another autistic child or our first child will react vilently towards it, possibily injuring it. People tell me it will be okay or it is a blessing to have an autistic child, but i feel nothing but pain and guilt. I wish i were as strong as you. I wish things were very diferent. I dont know why I write. I guess because i dont think anyone would understand in real life or be tired of hearing it by the 2nd time i bring it up. People dont like someone who is negitive all of the time, even in so-called autism support groups 🙁
I could have written this myself. I have two nonverbal autistic little girls and man is it rough. I feel so alone. I sit and cry most days in my car bc no one understands. My family sucks especially my mom sometimes. She doesn’t listen to me and just makes me more angrier and upset. My oldest daughter is 7 and it has been a never-ending struggle with her lately. There are days I don’t think I can even make it through the day. The constant battles with school, services, insurance, etc… is exhausting. It shouldn’t be this hard. 🙁
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Whewww! Reading this just had me crying like a baby. I know this is an older post but it’s still so relevant. My son is almost four and it’s been a rough journey but I love him so much and I will never stop fighting for him! I just don’t want to lose myself.