Why I Gave Up Hope
I just changed my six year old’s diaper. It was messy.
There was poop dripping down his leg. It was on his jeans. His socks. The poop got on my hand, couch and carpet.
As I was changing him he gave me a swift kick to the groin that took my breath away.
This is the side of autism that no one talks about.
I almost started to cry. I’ve been awake since 3:30 am. I haven’t slept through the night in months. I’m exhausted.
And I let myself think, just for a second, ‘why me, why us, and why my kid. Why.’
And I let myself go down the rabbit hole of feelings that accompany raising a baby with special needs.
I let myself sink right into it. The self pity. The why me’s and the this isn’t fairs.
And my personal favorite, the, I’m not strong enough to do this for the rest of my life.
I wondered what I did to deserve this. I made it all about me for a second. Which I never do.
And for one brief tiny second I let myself picture what this will be like when he is twelve. I pictured Cooper as a teenager. Then a man.
Only for a second though. I let the feelings last as long as it took to wrap the diaper in a Target bag and throw it on the front porch.
As I shut the door I caught a glimpse of the neighbor kids building a fort. Two boys. Both Cooper’s age.
They waved and shouted hello. My son should be out their playing with them. These boys should be my son’s friends. They should be having play dates. But they are not.
Cooper doesn’t play. He doesn’t have friends. He doesn’t even know these boys exist.
I breathed a sigh of exhaustion as Cooper non-verbally screamed at me to put another diaper on him. And then, just like that, I snapped out of it.
The feelings were gone. All of the sadness and depression and jealousy just left.
How you ask? Well. Truth?
I gave up hoping for life to be different a long time ago. I gave up hoping that his autism would go away. I just gave it all up and I I let myself fully accept reality.
Before you line me up for the firing squad hear me out. I had to give it all up.
I was living in this exhausting fantasy world that so many parents of newly diagnosed children live in.
My heart truly believed that his autism was going to go away. If we just did more therapy. More teaching. More of everything…he would one day be fine. And then, well then, we could take a sigh of relief and look back on all these hard times and smile.
Cooper would be talking. He would be in a typical classroom. He would have friends and playdates. We would all be fine.
That fantasy world almost killed me. The hoping.
I couldn’t take the pressure of it anymore. The pressure of hoping he would talk. Of hoping he would be potty trained. Of hoping he would turn out normal. Of hoping that he would grow up and get married and have babies. Of hoping that one day, just maybe, he wouldn’t be autistic anymore.
I would tell myself I was hoping for first words, friends, games and hugs but what I was really hoping for was that his autism went away. And I was too scared to say that out loud.
The hope was a cover up. And it was killing my reality.
I had turned into this person that I hardly recognized anymore. I was treading water basically.
I was waiting for words. For a conversation. For it to get easier.
I was waiting for something that most likely wasn’t going to happen.
I was living in this constant game of waiting for life to get better. I’d have these thoughts like, once we start ABA then this will be fine. Only, it wasn’t fine. Or, once we get him communicating then this will be better. Only, it still wasn’t.
And before I knew it I looked around and my son was almost six and I felt like I’d been hoping and waiting for so long that I was missing the amazing kid in my life.
I was slowly going insane.
Hope. It’s a funny thing. Never give up they say. Keep trying. Stay positive. But, what if the hope is killing you.
I found out that Cooper’s autism was severe when he started Kindergarten.
Age five was a tough year for my ‘hope.’ My baby was so different. He was in special education. School wasn’t fun for us. It was IEP’s and stressful conversations.
I spent every single day waiting for a phone call telling me something bad happened. I spent every day hoping he would just make it through the day.
I would spend days hoping that Cooper could go on a field trip. Or participate in a school play. I would see his classmates. I would see what it ‘should have been like.’
And then I stopped hoping. Just like that. I realized to keep my sanity I had to give up hoping for things like play dates and friends and field trips. I had to let go of the hopes for school dances and sleepovers. And sports.
Giving up hope damn near killed me people. I won’t lie to you.
I felt like a terrible mother. But I couldn’t take the alternative any longer. I was living in a constant state of denial.
Do you know what it does to a mom when she is continuously asked by friends and family if her son is going to talk? Or use the toilet? Or learn to read? Or move away after High School?
Daily people were asking me what the future looked like. And they’d always say something like, ‘well, HOPEFULLY, he improves.’ ‘Hopefully he starts talking.’ ‘Hopefully, he improves enough to attend public education.’
I would stare at these people. And I would be dying on the inside. I would always smile and say, ‘hopefully someday.’
And then one day I just stopped. I started saying ‘probably not.’ And now, I say, ‘no.’
Cooper will probably never talk. And he will probably live with us forever. And my favorite, Cooper’s autism is for life. It’s not going away.
And the relief I felt from those sentences. It was so freeing.
I realized I was keeping this false hope up to make everyone else feel better. I wanted to give them an answer that made them happy and comfortable. And it was at the price of my heart.
So, I stopped. I gave up the hopes of my perfect, normal child. And as soon as I did that I was able to accept life for what it was.
Giving up hope saved me and our family.
Cooper and I have beautiful moments. We laugh. We hug. I tickle Cooper. He blows raspberries on my back.
We go swimming and wrestle. I lay with him before he falls asleep. I laugh at his trains. I sing him song after song.
I jump with him on our trampoline. He even communicates with me using his speech device. And oh his smile people. It’s the best.
And slowly, those things started to make me feel OK. Not quite so sad.
But I had to give up on the hope that we would have someday have a conversation. I had too. I just had too friends.
The hopeful waiting is gone now. I don’t spend nights thinking of what if’s anymore. Now, I live in reality. And yes, it can be a sad place. But, it’s OK. We are OK.
And if someday my beautiful, funny, amazing little boy starts talking I will be the first person to shout it from the rooftops.
I will experience the joy in a brand new way. But I’ll be dammed if I am going to spend my life waiting.
Instead, I am loving the kid that I have. No more hoping for a different one. Because he is the funniest, cutest, most amazing little boy.
Autism does not change that.
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 don’t think it’s giving up hope- it’s just accepting who he is. I think it’s a good thing ❤️
“I am loving the kid I have now” I love that your finally at a place where your focusing on the now and the positives of the moment…..I’m like 60% there but I hope to be there soon:)
You’ll get there. I promise. It took a long, long time for me. 6 years. Hugs friend.
Yes I agree, I’ve never given up hope but I’ve had to give up my expectations of my son, and that’s how I’ve learnt to cope with it all in the last six years. If any of my friends are conversing about their hopes for their child’s future I just move on or don’t join in. I don’t expect my son ever to have sleepovers, best friends, a lover. But I hope he will in my heart.
What a beautiful post and an interesting point of view. Thanks so much for sharing.I read many, many years ago, an article written by Dear Abby about a couple who had dreamed of going to France, but the train had taken them to Italy. They grieved and were so sad about missing France and all their dreams of France, but one day, when they gave up those thoughts and dreams of France it allowed them to enjoy Italy and realize that Italy is a wonderful place to be, too.
I hate that goddamn story. Sure, it’s like ending up in Italy instead of France, except you only have Francs, and there is no way to exchange them for Lira. And you’re not in Rome, or Milan, or Tuscany, but some tiny little town with a handful of people who only speak Italian, and you don’t know Italian. Oh yeah, and you can’t leave and go home, because there’s no way out of town. Sure, you can survive, but you don’t know how to farm, or build, so you learn as you go, with people you can’t have a conversation with. And sure, there’s a phone that you can call your friends and family, but they can’t tell you how to get home, and most of them can’t come and help you either. You can make the best of it, and have a fulfilling life, but that story is garbage.
I like this story, but I would substitute Afghanistan or Syria for Italy. Somewhere where things are just plain scary at times.
Why can’t you still love and appreciate Italy for all its wonders and beauty whilst still hoping to get to France someday?
Very true friend. But all the stuff that goes along with Italy can be very, very challenging and exhausting.
Awww mama! You have hope, but it is a hope that is more healthy for you and Cooper.
I know exactly how much it hurts. I feel your pain… I think there is so much pressure on parents with autistic child from everywhere. All the therapies and options…. the sooner you start…etc. And then you hear about NEW ways, new approaches etc… you start wondering what IF I don’t do enough, what IF we try this, then…. I hate the word “treatment” or “cure”. All this can give false hopes and lead to anxiety and makes us to stop enjoying the MOMENT we have TOGETHER with our autistic children…. It can be such a relief to just STOP worrying about the future and accepting the NOW. Enjoying the smiles and laughs and crazy stuff that others don’t get. Enjoying the special, different ways together. It’s not about loosing hope, it’s about living the moment. Accepting the different. ?❤️?
I don’t know what hope is anymore
Oh. I’m so sorry. I’ve been there. I really have. Message me on my Facebook page if you need to chat. Or vent. I’m here friend! Hugs.
❤❤❤ accepting… I’ve often had similar feelings and thoughts. My little guy is 4… i like the ending to this post… “if it happens I can experience the joy in a brand new way” — no matter what, I’m a true believer that every single person is here to make a difference. My little guy has taught me so much already. Good job, mom!
my first daughter was diagnosed on her 3rd birthday in feb 2016 and then my second daughter was diagnosed at 18 months in November 2016. I have been on an emotional roller coaster that I am really reluctant to share. I am angry a lot of the time and too live in the pity party of 1 – and it makes me crazy. I love my little girls I think they are amazing but I then also feel like wtf girls aren’t supposed to get this let alone my only two children both have it! And yes for me too the future weighs heavily – I am going to be 40 this year so I feel a ton of pressure to get things right and now. I came across your blog this evening and I am so glad I did. Thank you for sharing truths.
This was spot on! And it was beautiful. Thank you so much for sharing. Hugs to you.
This post was just what I needed today…Thank u for posting…I shared it
…I am an Autistic Mom of a 3 yr old little girl, my Gia. She was diagnosed last June and it has been a very challenging and isolating experience…
I have fought so hard to get her speech therapy and OT therapy and into a school.for special needs…But where are the other Autistic parents? I can’t find a single one in my community. Web sites and message boards and articles galore but where can I connect w other autistic parents even an online group? I would really appreciate any thoughts or tips. ..
Thanks for reading.
Angie
My son was 6 and I got ABA therapy I took him to the bathroom every 30 min and after 2 weeks he started to go by himself I help with the wiping or get wet wipes it’s great
If you need someone to talk to, I wrote a comment on your FB post as well. I get it…all of it. Even doing the blog thing myself…but never have time to write!! Contact me if you would like to connect. Hell, I know…what autism parent has the time for friends…that seems so damn normal, lol. But sometimes, we need them…especially ones that really understand the depth of this life…all the ups and down…the chaos…all the things people don’t talk about. The stuff we just have to quietly accept as “our norm” which is so far from normal, ha. I hope to hear from you. =)
Cooper is capable of communicating. Evem if its from device but it is communication. You didn’t loose hope. It’s OK to have hope. Hope of him learning. He is progressing. Even though he uses device, communication is communication. And he can say yes.
If he likes wrestling, he might be able to do some wrestling lesson.
Don’t forget. He keeps learning new things which is really cool.
I came across your page and I can relate. I have a 4 year old son with severe non verbal ASD. He is still in diapers. He was diagnosed at 19 months and has been in various therapies since. I also have the “someday he will”… thoughts but I also do know there is a very real possibility that he may not do these things. I also get flack from family “oh the pre-school he goes to is not right for him, because he is not improving” “you don’t discipline him enough this is why he acts this way”….ughhhh. It is also hard because whenever I say things that insinuate that our son may not improve, my husband gets angry with me, for him I think its harder to believe that he may not have a son to do all of typical father/son stuff with… but I am also a realist.
Thank you for this…I have an almost 17 year old son severely affected by autism (we added epilepsy at age 14) and this is a lesson for me, even after all these years. I STILL find myself wishing things were different. Isn’t that sort of insane? I mean…I’ve been in this world, in one way or another, for 15 years. How can it still break my heart to get a class ring announcement in the mail, addressed to a 6 foot 3 inch baby boy who wears diapers and plays with Thomas trains? How can I STILL look at “normal” families and envy them? It truly does drain one’s energy to dwell on these things, and your post is reminding me of that fact. My struggle every day – every minute – is to accept and say “this, too.” Thank you again. <3
I feel like I could have written this. I don’t really see it as giving up hope but accepting that the victories my kiddo will have will be considered small by many though huge in my eyes. I had to let go of what society said I should be trying or doing for my child to make him better. I realized that I could be a better mom to him if I wasn’t pushing for what society tells us is normal. In the long run I want him to live a happy life. Now that I am happy, he is happy too.
My son will be 15 in June & we still go through this. He’s still non-verbal, trouble using the toilet, sensory issues, refuses to eat most things, etc! I learned long ago as well that although everyone does hope that these things will at least get better we are pretty sure none of it will go away. My two daughters & I have accepted this; we have to remind other people that at his age it’s not likely that things will change that drastically. He is who he is & we accept that & if they can’t then that is on them; not him or us!
Sending love and Hugs
Our little one is only two and have been diagnosed with moderate/severe autism. Some days I really want to know when does the sun break through but then my munchkin comes running in yelling and showing me his trains and i just let it go and love him for who he is. I thank you for this post. I really needed to read this to know that we are not alone on this journey.
I agree with some of the previous comments, I think its just finally accepting who they are. But please please don’t give up hope on achieving his goals! My son has autism and his goals in IEP and in ABA we work hard to reach them and maintain them. Please never give up on your son, your his advocate, his voice. I invite you to read ” The Reason I Jump” it was written by a Japanese teenage boy with Severe Autism. It really gives a huge insight on what ASD kids are thinking.
My 6 year old son kicked me in the face today, while having a meltdown when I changed his diaper. He was so off this morning it took me and the aba 2 hours to get him ready to go to school and all I could pray for was that we actually made it to school, so I could have those 3 hours of a break to cry. My son is considered “high functioning” yet he still doesn’t use the potty at 6 and has sensory meltdowns daily. This was nice to read,especially today when it feels so lonely.
Hugs to you! I totally get it.
Thank you so much for posting this. I felt as though I could’ve written this myself. ❤ the tears and fears are enough to handle, let alone the hope, which honestly is just easier to let go of.
I have 2 sons that are Autistic. My 15 year old (will be in Feb) is now doing great, but my youngest (13 yrs) is regressing. I go through a rollercoster ride every few years where they both seem to switch roles in life. It definitely keeps me on my toes. After having a daughter who is top of her class and now an extremely smart college kid… I often wondered what “I” did wrong and why God chose me. I had to stop thinking like that and live in the moment with them. It has been hard, but I have accepted my boys are my boys and I am here for them. I’m not saying I don’t think about the future and having to have my youngest live with me for the remaining of my days… we just take it one day at a time. I will pray for you and Cooper and hope one day he will too find his voice. xoxox
I have been there, too. I was still changing diapers when my son was 6. He is 9 now and is mostly toilet trained (needs help wiping sometimes). Keep hope for progress, not perfection. My son was non-verbal at one point, but now he can speak a few sentences and communicate needs/wants. Much love and hugs to you! 😀
This has me crying. My 5 year old has adhd, spd and 2 speech disorders. We are not going to have normal. Socially and educationally we struggle, he is self conscious violent and easy to upset – he’s also the most loving boy imaginable. I wish I could magic it all away for him. I would swap in a heartbeat to make him happy.
You are my doppelganger!! I have a cooper who is about to turn 5. Even you website is similar to our fundraising efforts called ” Help Cooper Find His Voice” and i feel the exact same as you…..weird!
I can’t tell you how many times i was where yu were. My Son was on one of the spectrums the violent side. My son has been hitting my Daughter and I since he was little, he was seen by so many different doctors it wasn’t funny. With no hope in sight we started to put him in the hospital sometimes for our safety. It was THE HARDEST moment of my life to do that, asking God Why Me Why my Son. It took over 3yrs of intense RTF but as hard as it was it saved all our lives. He is 19 now the aggressive behavior is at bay and now our hope is for him to Graduate at 21. He is verbal but with speech delay ….my thoughts consume my mind alot of what will his life be when i’m gone what will happen to him??? So the future still consumes your mind 🙁 always trying to find a light at the end of the tunnel it could be alot worse for any of us but somehow i still feel alone in this journey of my Autistic Son
Reblogged this on yowriterblog.
Thank you! I needed this!
I still have hope. My son is 26. My hope is not that he will magically be cured of autism. My hope is that he will talk one day. My hope is that he will have meaningful connections in his community that care about him…especially when I’m gone. I hope he will be happy and have joy and peace.
I hoped and worked to help my son overcome challenges in his life. I did not succeed. My hope has changed over the years. But I still hope.
Thank you for your honest words.
I just wanted to say that what you wrote was beautiful. Hope evolves… It is quite a journey that’s for sure
I can relate. I think that I finally have given up on the what should have been’ s as well as the what will be’s. This journey has been the most challenging and heart wrenching of any in my life. I spend a majority of my day worried about the future and I can rarely find the joy in today. It has been 7 years for my family and it never seems to get easier. I think it gets harder. Yes. It’s harder. Thank you for writing such a heartfelt blog. Cooper is lucky to have you for a mom ?
I feel like I just read MY life story. I am the mom of Aidan, a 15 yr old with Autism. I too, at about the same time…..gave up hope. What a freeing experience that was. I felt “trapped” in this “I hope”, world that I think deep down inside, I always knew that he was going to be what he was/is forever. Sure, he eventually started using the bathroom and I could rid myself of diapers and pull ups, but he still has an occasional mishap now and then (more often than I would like, but oh well….) Yes, he says things like ” I want Milk” or I want Chips”, but he is never going to have a meaningful conversation with me or anyone for that matter. He will always go to a special school, he probably will never have a job, and he will never be able to live by himself. I, as a mother who has come to terms that THIS IS THE WAY IT IS GOING TO BE…..I am content. Sure, I have my days, as I am sure you do also…..but I look at myself in the mirror and say “it could be so much worse”. I thank god for him everyday as he has taught me how to be patient, how to love more than I ever thought was possible and how to be accepting of things I can not change. He loves with his whole heart….and I know he loves me and that is enough for me. I praise you for your courage to let go of hope…..and learn acceptance and peace! God bless!
This is lovely, and I understand. And it’s applicable no matter where your kid is on the spectrum. I’m totally in love with the kids I have now that I’m not insisting they are going to be “just fine.” We are lucky in some ways and not so much in other ways. Good luck to you!