Confessions of a Special Needs Parent

Parenting is hard. I think we can all agree on that. You are raising a tiny little human from birth to adulthood without an instruction manual and silently praying they turn out sane and happy.

Now imagine if that tiny little human has a diagnosis of some sort. Autism. Cerebral Palsy. Traumatic Brain Injury. The diagnosis could be physical, emotional or neurological. It could be obvious. Or maybe it’s invisible to the outside world.

Scary right.

You aren’t a doctor. Or a therapist or a physiologist. There is no instruction manual. It’s just you knowing in your gut that something is wrong. It feels like a roller coaster. It feels out of control. And just like parents of typical kids…you have no idea what you are doing. But yet, you are entrusted to raise this tiny little VULNERABLE human.

At first you don’t want to acknowledge it. Then, you don’t want to believe it. And once you get over that hurdle you want to talk about it. You need knowledge. You need to vent. You need a friend. You need people to understand.

Parent Shaming

You turn to your spouse. Your family. Your friends. Whomever will listen. You need help. You need someone to hear you. But the conversation seems awkward. Strained. The friend looks at you funny. You see judgement. Doubt. They don’t relate. They don’t understand.

You try in the break room with co-workers. You try to vent during happy hour. But it never seems right. The looks make you feel shameful. No one gets it.

So, you stop talking. You silence yourself. You start to wonder if you are complaining. Maybe you are just bad at the parenting thing. Maybe, just maybe, you are making some of it up in your head.

You start to doubt everything.

From that moment forward you struggle silently. You keep your mouth shut.

When you do mention any of your struggles you feel the need to put…’but I love my child’…in every sentence.

I want to tell you that this is wrong and it is an inevitable part of raising a special needs child. It happens to me frequently as a writer and a mother. So, in retaliation, I asked special needs parents to confide in me. I asked for their secrets. Their confessions. I asked their deepest, darkest thoughts. I did this because you and I need to know that we aren’t alone. Our feelings are normal. I also want to shed a little light on what it is like to live in a day in our life.

On your darkest days I want you to read these words from your fellow parents. And you will know that you are not alone. What you feel is completely normal.

Go easy on yourself. Feel every feeling. Be upset. Be sad. This life is hard. And then learn to laugh. Because that’s the only damn thing that will get you through.

I promise you with every ounce of my heart that you are going to survive this.

225 of you sent me confessions. These are my favorite.

My Favorites

”I love my daughter to the end of my entire being. I prayed so hard to become a mom and she is who I got and I love that I was blessed to have her, but sometimes, I really hate that this will be my life forever. I have people who encourage me to see the beauty in autism. But the life I live everyday isn’t always beautiful.”

“I’m scared I don’t love my son enough. Through the trauma of the diagnosis and the daily difficulties we face I sometimes fantasize about running away. I wish my life was different.”

“The bad days are so bad. And the good days are bad too. It almost seems unreal. Why is this so hard?”

“I’m addicted to over the counter sleeping pills. My anxiety is so high over not sleeping that I have to take a sleeping pill just to fall asleep. And I don’t even care.”

“I haven’t told my boys (ages 6 and 4) that they have autism. I know it’s coming. I am terrified.”

“I’m not planning for college. Instead I’m planning a way to pay for her care for the rest of her life.”

“I have to message this one because it is so dark to me and the thought scares me and breaks my heart simultaneously. I fear my son will require constant care for his whole life and I’m scared one day I may resent him for it.”

“It’s all my fault. #AUTISM”

“I hate people who say it’s a blessing. Autism is a curse. My son is higher functioning, so was diagnosed later (his early symptoms were to subtle to get anyone to listen). No child should have to go to treatment all day instead of playing. I will never consider having another child, I love my kids, and EVERY DAY is a struggle for them, and us. Every time I call their names and get no response, I crumble inside.”

“I know in a weird way I should be thankful that my son is so severe that he won’t know he is different. He won’t know he is being bullied. And in a way it provides me comfort. But in a way it crushes me even more. My son doesn’t have any idea what is happening around him. How can I live with that?”

“I fake everything. I am always smiling. I am always laughing. People say I am the strongest woman they know. LIES. I am heartbroken. I love my kids. I love my husband. But I am a different person. And no one understands. I feel like a shell of the woman I used to be.”

“I was telling my best friend I don’t want to have another child because I’m scared they could have special needs or have them worse than my son (even though I want more kids more than anything!) And she said “but that’s just hard on you because you have to do a lot for him…would you change anything about him?” And I had to answer no I wouldn’t change him, but the truth is…I would. I would change EVERYTHING!”

“Some of the sounds my son makes actually haunt me. I have to wear head phones at times.”

Confessions On Parenting

“I have resentment towards my child.”

“Sometimes the pain makes it hard for me to even look at my daughter.”

“I relive my pregnancies trying to figure out what I did wrong.”

“I always tell my son he can do anything, that we can do anything. Sometimes I’m actually not sure if he can but we keep trying anyway. (he has proven me wrong many times)”

“I have a “sad” moment every single day about the things that my son will miss out on because of his non-verbal, severe autism. I do everything I can to help him, but it never seems like it’s enough. I allow myself one good, gut-wrenching cry a week. If I didn’t limit it, I wouldn’t be able to function. He was diagnosed 2 and a half years ago, and it hasn’t gotten easier.”

“I am jealous of parents that have kids that aren’t severe. First I was jealous of parents with normal kids. NOW I’m jealous of autistic kids that talk.”

“I’m cheating my other children.”

“Sometimes I put him in his room for an hour with the tablet and just cry by myself while I clean up the terrible messes he makes at home. I know he’s safe and I have a second to myself to just have a pity party. It’s terribly lonely. Even though my husband understands, he doesn’t truly get it. I have to worry about all the quirks, preferences, schedules, and everything else. It’s very weighing! And as much as parents to typical children say they understand and support me, it doesn’t really help. There’s no end!”

“I hate when my son doesn’t have services because I have to deal with his behavior for the whole day.”

“I see no future for my child and it breaks my heart daily.”

“I love my child but there are days when I really don’t like him.”

“I’m tired of all the damn therapy. I don’t know if it’s working. I think we should give up but society won’t allow it. So, we keep doing it. And there is never a break.”

“Its hard for me to reach out because feel like I won’t be accepted because my son is high functioning. I feel shunned like people won’t think I can relate because my sons disability isn’t as obvious as others. But the older he gets the more his differences are obvious to everyone around. I get “he doesn’t look like he has autism” or “he will outgrow it” and it’s frustrating explaining things because it’s not visible.”

“I let my NT 3 year old have a NUK and sleep in my bed because I have so much guilt.”

“I feel like I’m never enough. I can’t do it all but I pretend I can and it’s exhausting.”

“I spend days wondering if I can handle having this child with me until I die. I don’t think I can.”

“I am a failure because this is so much bigger than me. And I am not strong enough.”

“My kid deserves a way better parent. I do everything I can and it’s never enough. He always needs more. I have nothing left to give.”

Confessions On Marriage

“I am angry at my husband because he gets to have a job. I have a college degree too and I can’t work because no one else can take care of our son.”

“I am jealous of my kids dad. He spends his time with our two younger children while I am forced to miss every event because of our autistic daughter. It’s not fair.”

“I know my marriage will not survive this.”

“I hate my husband. He helps with our son but he doesn’t help me emotionally. And that’s almost worse.”

“Autism destroyed my marriage. Now I am divorced. And I know I will never meet anyone because of my son. I tried dating and the men couldn’t handle it. I am going to be alone for the rest of my life. Wait, that’s wrong. I’ll have my son.”

“I am never going to stop grieving and my husband hates me for that. And I hate him in return. I don’t understand why his heart isn’t broken.”

“I think my wife is autistic too. I am surrounded by loneliness.”

Confessions On Life

“I give up almost everyday. Actually that’s a lie I give up everyday! Sometimes as soon as I wake up.”

“I fear I won’t survive this.”

“I just gave myself the nickname….crybaby quitter.”

“I feel like I fail in every other area of my life (marriage, home, friendships, other children etc) in an attempt to parent my ASD kiddo.”

“I feel hatred and jealousy towards women who have a bunch of kids (4plus) and there all typical … I only have 2 and ones autistic . I know its terrible but it makes me sad and resentful. Always makes me wonder why my son and not theirs.”

“I killed myself as a single, working mom to get degrees to take care of them without help only to have my child with autism take away my career and I love him but I am mad at him for it.”

“I avoid taking my son to peoples houses. Not because of how hard it is in me. I wish. I’m embarrassed, and so sick of having to try to rationalize things. He pooped on my friends floor once because he didn’t like their toilet. He chews up their stuff. Drops expensive things. They don’t understand autism and I feel judged and so embarrassed.”

“I am a preschool teacher and it’s so very hard because I see what your “neuro-typical” children can do and I feel such a huge amount of resentment and wishes of my own daughter being able to do the same things I teach every day–writing your name, etc etc.”

“In the past I have contemplated suicide.”

“I see and know mother’s who drank and did drugs while they were pregnant and their kids are normal. It makes me crazy. I hate them for it.”

“I secretly cry every day. My husband has no idea. He thinks I’m taking a bath over doing laundry.”

“I lost my relationship with God because of this.”

“Every day is exactly the same. There are so few moments of sunshine that I can’t stand it. I need it to get easier.”

“I have a co-worker who does nothing but brag about her niece who is the same age as my daughter (5) and how she’s reading, does this and that, basically the sun shines on her ass and she’s perfect in every way. I get so heartbroken by her bragging, inside I’m dying a little bit each time and I just have these feelings of “I wish my daughter could do that.”

“Sometimes I just sit and cry because I don’t know what to do.”

“The weight of the guilt is more than I can handle.”

“My youngest has severe, nonverbal autism. My confession? Some days I am just tired of changing diapers, giving him a shower, brushing his teeth, clipping his nails, shaving his face. I’m tired of getting him dressed, tying his shoes, cutting his food into bite sized pieces. Tired of monitoring his screen time. Tired of the stimming. Tired of not being able to just run to the store when we run out of milk. Tired of not being able to stop for dinner on the way home from our other sons’ games – tired of it always being the McDonald’s drive thru and always having to tear chicken nuggets into four pieces before handing him a bag of fries and chicken pieces- half of which will end up on the floor of the suburban. The thing is — feeling tired of these things– even though I’ve been doing it all for over 19 years now- brings me guilt. I have a handful of friends who have had to bury their children. There is no greater pain than that- and what they wouldn’t give to tend to their children rather than mourn them the rest of their days…So most days, I’m good. But some days, I’m not… and the guilt is stifling.”

On Family

“My parents told me my son is spoiled and just needs to be disciplined. They blamed me and my husband because of one overnight stay with them that was “full blown Autism.” March 7th will be one year since I’ve seen or spoken to them other than an email and one family gathering. I chose my son and husband.”

“Mine is a little different because I’m not technically his mom…Mine is I was done having babies 17 years ago and I shouldn’t have to be doing this. I absolutely loathe my daughter at times for not being a mother. I’m supposed to be the Grandma that spoils them and sends them home. Instead I’m feeling all of the same things as you … I wonder how long I can honestly care for him. He’s five now and I’m already exhausted, what happens when he’s 10 or 15, etc.”

“It drives me crazy when people complain to me about their kid talking too much. Do you know who you’re talking to?! I would give anything (ANYTHING!) to have me son talk my ear off!”

“I’m terrified that my husband’s parents are going to love the ‘other’ grandchildren more than my son.”

“I hate my parents and sister for not helping me. I hate listening to them talk about their ridiculous problems. If they only know that every day of my life is a war. And they don’t care to find out.”

“Before my daughter was diagnosed I was crying to my mom about how lost and heartbroken I was. She looked at me and started crying and told me ‘this was hard for her too and that she didn’t like to hear about it.’ That night I googled narcissistic personality disorder. I will never forgive her for not helping me more.’

“I have four siblings, three of which live with 10 minutes of me, and I wouldn’t trust any of them to care for our son should anything happen to us. We have a meeting with a financial planner next week, and I’m not looking forward to the conversation of who i would want to be the guardian. Can I say ‘none of them’?!”

“I hate my siblings for taking their kids for granted.”

On the Future

“Why me? Someone tell me…why me? What did I do wrong?”

“I am 5 months pregnant. I just found out I am having another boy. I am devastated because I know that autism happens less frequently in girls.”

“I will never have another child. I actually made my husband get a vasectomy. I could never do this again.”

“I hope my daughter never has to live without me, it may sound selfish, but I’d rather live with the heartache of losing her than not knowing if she is properly cared for and hurting and not able to express herself.”

“I grieve over the life I should’ve had.”

“My heart breaks when I think about huge milestones that we will miss. Graduation, Prom, Senior Pictures, College, Marriage, Grandchildren. I’m never going to have any of it. I should’ve had more kids. But the fear was too great.”

“I wouldn’t wish autism on my worst enemy. I cringe and get jealous and emotional when I see a “normal” kid my sons age. When I see them talk or do normal three year old things that mine should but doesn’t it stabs me like a knife inside. It kills me.

This is a glimpse into the private world of special needs parenting.

“How do we advocate for something we hate so much? I hate my son’s disability but I will travel to the end of the world to help him. I am motivated, energized, devastated and heartbroken all at the same time.”

A huge thank you to all the amazing parents that shared their thoughts with me for this post. You are helping so many.

We aren’t all that different from parent’s of typical kids. We struggle. We laugh. We love. We survive. It isn’t always beautiful. Often it can be scary. But the world should NEVER doubt the love that we have for our kids. It is fierce.

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.

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