A Letter To My Other Son…The Sibling To A Special Needs Child
My little peanut,
Today is your fourth birthday bud. How can that be? I look at you running and jumping with your friends and it’s hard for me not to cry. You are amazing. I am so proud to be your mom. I need you to know that.
I want to tell you a few things. I know you won’t understand them now. And that’s OK. But someday, when mom is old and grey, I want you to read this letter.
I want you to know I am sorry. And I am so unbelievably thankful that you are Cooper’s brother. You need to know that.
I have a secret. No one knows this. I cried the day I found out I was pregnant with you. Actual ugly tears bud. I have never been more afraid in my whole entire life.
Your brother was two. And I was failing as his mother. I couldn’t fix him. I was chasing doctors and therapies and coming up short. I felt like I was failing as a wife, a friend, an employee and a mother. My world was crashing down around me.
Autism was right around the corner. Severe, nonverbal autism. The scary kind.
I lived every single day with a dreadful feeling in my stomach. I knew the bottom was going to fall out of the perfect life I fantasized about. I could feel it happening. It was only a matter of time until we had the label.
But I was faking it and making it. I kept the perception up. And then I found out you were coming. It was a Saturday morning. I’d been awake all night. Your dad was at work. And I had a hunch. I peed on a stick and the thing practically screamed YOU ARE PREGNANT.
I was so scared buddy. I hadn’t slept in 2 years. My world revolved completely around your brother. Much as it does now. Not a lot has changed in that department. Hell I think the first year of your life I nursed you in every waiting room in Duluth.
For the next 9 months I would lay awake at night when I should have been catching precious sleep googling ‘odds of having two kiddos with autism’.
I was so scared Sawyer.
And then it was January and you were here. And, oh my God baby boy, you were perfect. You were the most perfect baby. And I can say that because your brother was so challenging. You slept. You ate. You laughed. You were content.
I want to tell you something.
You saved me buddy. I want you to know that. Not a lot of kids can say they saved their mom. But you did.
You saved me…in every essence of the word. On the days when autism had me down. On the days when my heartbreak over your brother’s disability was more than I could handle. You were there. Laughing and smiling. Learning to crawl, walk, jump. And speak! Oh my God the first time I heard you say ‘mama’ I couldn’t stop crying.
You also brought me out of the Autism world and back into reality. When your brother was diagnosed I jumped head first into the rabbit hole of his diagnosis. It became my whole entire world. It’s all I could think about. And then you were here.
You reminded me that there was so much more in this world than just ‘Autism.’ You reminded me that I needed to be a parent first. You reminded me that I had two beautiful boys that needed my attention. So, I thank you sweet boy.
You gave me all the milestones and memories that a mother should have. You have given me more joy that I can put into words.
You were so easy that you allowed me to focus on your brother. On his autism. And for that I am sorry. I am so sorry his disability overshadowed you.
And on the other hand watching you pass your older brother cognitively, socially, emotionally and physically has been crushing. You are my little reminder of what Cooper isn’t. There are days where I miss your brother so much I can’t stand it.
But that doesn’t mean I love you any less.
I think of the all times we almost downplayed your development because your brother learned to use a straw. Or touch a raspberry. Or point to his nose. Such simple things. We never meant to do that buddy. We just knew you were fine. You were thriving. Your brother wasn’t.
I want to say I am so sorry. You were born into this. Having a brother with severe special needs has to be terrifying. And frustrating. There are days when the only interaction you have with Cooper is a kick in the face. I can’t even imagine what you must feel. I’m a grown up and it’s hard.
Autism is such a mystery to you. I can see it in your face. There are days where you will look at Cooper and ask him a question and he will squeal in delight. Those are the good moments. And I know they are few and far between.
I want to thank you too. You can challenge your brother in a way that I can’t. You bring him out of his shell. You force him to interact. You push him and wrestle with him…just like brothers should. And I remind myself that to you he isn’t an ‘autistic brother.’ To you…he is simply your brother.
I want to say I am sorry that this is happening. You are the most social kid that I know. You come to me to meet those needs because your brother ignores you. You demand me to play with you.
And often I am too tired. The exhaustion is real. While you are sleeping in until 8 am I am awake with your brother at 4 am. We live a whole day before you even wake up.
Part of me wishes you didn’t know the word ‘Autism.’ And then a tiny part of me is thankful that you know hard times. That you know sadness and disabilities and differences. I feel like it’s almost a gift.
But I feel like I’ve been robbed too. I’ve missed so much of your life.
Last month I forgot the year you were born. We were at the doctor having your well-child visit. And the receptionist asked me your birth date. I said January 20. And she said ‘year?’ I just stared at her. I looked at you. I looked at her. And I burst into tears. I truly didn’t know the year you were born.
My life is split up into three parts. Before Cooper. Before an Autism Diagnosis. And After the Diagnosis. Where do you fit into that buddy? I don’t even know.
Your daddy giggled about my forgetful brain and attributed it to lack of sleep. I can’t forget it though.
I think of the times I shushed your beautiful chatter and nonstop questions because I had been listening to your brother scream for hours and couldn’t take one more sound.
What kind of mother does that? But I know that you will understand. You will be quiet. Your brother won’t.
And oh the guilt. It’s hard to put it into words.
The other day you grabbed my face during a social worker visit and looked right into my eyes and said, ‘Can we talk about Sawyer for a little bit mom?’ I will never forget the way you held my face with both of your chubby hands and asked so sweetly Sawyer. And I told you we would after the social worker left. We would talk about Sawyer. Only we didn’t because your brother needed me.
I want you to know I am so sorry for that moment that you will never remember.
I want to thank you sweet boy. Our life is hard. It is even scary sometimes. It’s exhausting. And you get the leftover shreds of a mother after autism is done. And I am sorry.
Some days I think I am creating a monster because I spoil you so terribly. You see your brother doing so many things that you can’t. So, I give into you all the time. I hold you and coddle you. I let you stay up later at night so we can have a few minutes without autism.
Our life doesn’t make sense. I get it kiddo. I truly do.
I am so sorry that 5 times a day I say to you…’because he’s autistic.’
Or the times I told you that you had to walk because I had to carry your brother. It started when you were 2. Your brother was 4. You would scream at my feet with those little arms in the air and your brother would kick at you from my arms. We would be in the midst of autism meltdown so fierce that I would have to walk and hope that you would follow.
Those moments are burned in my brain buddy. Oh the guilt.
And I remember last summer you looked at me and asked if we could go to a fair. And I explained how daddy was on a fishing trip so we couldn’t go because Cooper wouldn’t be able to handle the noise and lights. You grabbed my hand without missing a beat and told me you’d carry Cooper. You were three. I think my heart burst into a million pieces.
There are moments when I will look at you and wonder if you will take care of your brother after I am gone. Will you love him like I do? Will you shave his face? Will you dress him? Will you change his diaper if needed? Will he live with you?
How can I ask you that Sawyer? I want you to go to college. Get married. Have babies. But part of me has this favor to ask of you. I need you to love your brother after I am gone.
The pressure of that is unbelievable. But it’s a real conversation that you and mommy and daddy will have to have. Someday we will have to talk about it. But not today.
Today you are 4 sweet boy. And we are celebrating everything that is Sawyer. Today Autism is not the priority.
I am watching you play and thinking about all the things I want to teach you.
I want to teach you kindness. And love. And patience. I want to teach you that disabilities are not scary. And I want you to fight for what is right. I want you to fight for your brother. I want you to change the world.
But most of all I want you to be happy doing whatever it is you want to do. And to have no animosity against your brother. I want you to accept Cooper and truly see all the joy he brings to our lives. I want you to be brothers in every essence of the word honey.
And I want you to know I love you so much. Thank you for being with me on this journey.
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.
Photos were taken by Melanie Houle Gunderson (first photo) and Kacie K. Photography (featured image, second and third photos)
What a precious, sweet, treasured, deeply-loved little boy.
I cried as well … while eating my scrambled eggs. The tears wouldn’t stop rolling even as I continued to go on abt eating my eggs. This is our story. I said many of these words just yesterday to my Mom. My sons are alittle older, 17 and 12. So although we have walked every step u have now we are on to things like social groups ? friends? And dating ? And vocational rehab ? And college ? But our story has unfolded just as u have so eloquently written. Beautiful words.
You grabbed my hand without missing a beat and told me you’d carry Cooper. You were three. I think my heart burst into a million pieces. This made me cry. at such a young age he knows.
Wow your words amaze me im all new ti the autism world have a girl with chromosomal duplications and she was prem too but even her learning difficultires didnt prepare me for this. The poop smearing the drawing on walls no matter how many times hes told not too hes 4 i watch other kids his age and cry and let myself sink into the whole what did i do to deserve this. My daughter feels left out as her brother takes up pretty much every min of my day i eventually pass out with tiredness after a day with autism she voices how she feels left out all the time and when i try to spend time with her its like she doesnt want to she punishes me with words. My new relationship i feel will fail as much as he tells me everythin will be ok i know it wont and its not. I feel the pressure of the words i heard ‘hes like this cause of you’ ‘its your fault’ its all i hear then also the words ‘u exagerate it’ i live this life i never knew until i had to live it and the judgin makes me not wanna do trips coz by god both kids kick off and if he doesnt have a melt down his sister will act up just to get all attention. Im tired all the time sometimes i forget to eat im so tired
Lovely story
Oh my. Your writing is amazing. And yes, I did cry reading this. I can understand. I really can. We managed to get pregnant when Seb was 13 months. Back then , we had no idea about Sebastian’s autism. Seb was just sensitive, bad sleeper, … Gabriel, his younger brother is perfect, just like Sawyer. Thanks goodness and universe. It must be hard on siblings. And just like you, we ask the same questions. Love to you and your family.
I cried reading this. You are so eloquent. Sawyer is just the cutest boy ever (besides mine, natch).
???
Love this, so beautifully written, honest and true. Happy birthday Sawyer! ???
This sounds more like you are “sorry” your 1st son was born. He didn’t ask to be autistic. Sounds more like you are sorry of what y’all are missing instead of the gift you’ve been given.
You are the first person out of 8,000 that’s read it that way. Interesting. I love my son. All the stuff that accompanies autism is amazingly unbelievably hard. How old is your autistic child? I’d love to know your trick!
God bless you mommy you beautiful boys could not have been blessed with better parents then you and Jamie I’m so sorry anyone could say anything to you that nasty you Rock girl so keep on keepinnon you got this sweetie. Much love from Btoken Arrow Zollshoma ??❤️
She’s not sorry Cooper was born. If you think this woman doesn’t love and treasure Cooper, you CLEARLY haven’t followed her long. Why would a mom be a tireless advocate for a kid she doesn’t love? Why would she spend every waking minute thinking of ways to improve his quality of life if she “regretted” his birth??
Listen, I have two sons, both neuro-typical. And even I can see that what she’s saying here is that she’s sorry for what Sawyer has had to endure. That it’s an effing unfair hand they’ve all been dealt BUT that she also hopes it teaches him compassion and empathy and patience. Which I am sure it already has. She’s saying she’s sorry for what will no doubt be a life filled with challenges that aren’t necessarily Sawyer’s responsibility. She’s human. She feels bad for the effect it might have on her youngest. That doesn’t mean she doesn’t love and value and delight in her oldest. Period.
AMEN SISTER! Thank you! People can criticize me. Be mean about my parenting tactics. Or the fact that I feed my kid sugar cereal. Or that my carseats are disgusting. BUT NEVER EVER EVER EVER question my love for those boys. Nope. Hugs to you!
Findingcoopersvoice is my Autism Mom Mentor of sorts and we text each other about things quite regularly. She has helped me in immeasurable ways, and I find your assertion quite staggering and frankly offending. NEVER have I met a more caring, compassionate amazing advocate for her son than her. We all get to vent, but we don’t get to judge. I won’t judge you for Mom Shaming, but I ask that you not judge my friend.
Hugs friend! You are the best! And I plan on guiding you right towards a glass of wine of these days!!
This comment is unhelpful to basically…everyone. Kelli Smythe, please look for your #1 SANCTIMOMMY COOKIE (made with the breastmilk!) in the mail. I baked it in my organic, gluten free kitchen and it is being delivered to you via rainbow farting Pegasus.
I have never loved any written words more than this comment. I actually printed it!!! THANK YOU!
you win the internet today!!
She does. She wins the whole entire internet award!!!
This is the best thing that’s ever happened on the internet. lol you’re awesome!
What a self righteous, asinine thing to say! How can you presume to know how much this woman loves her son?? BTW, when you’ve cleaned poop off your walls and carpet for the fourth time in a week, please get back to me about what a “gift” autism is. YOU SUCK.
p.s. Kate, if you want to delete my comment, please go ahead, but I couldn’t not say something. I just couldn’t.
No deleting coming from this end. The funniest part about all of this is this morning was a rough one for me. Cooper pooped all over my couch and floor. It got all over my hands. The dogs stepped in it. And as I cleaned it up I looked at Cooper and thought….you are the cutest dang thing. And then I cried. It was a tough morning. This comment was a tough one to read. Everything I do is for that kid. Anyway. THANK YOU!
Kelli your comment is such a shame.
Coopers mom should be commended and celebrated for how much she loves her children. If you read her blog, you will see what an incredible mother she is. Honesty like this, show other autism parents like me, that it’s ok to be human and to find things difficult.
I wish you nothing but peace and happiness, as often what we put out is a reflection of how we are feeling ourselves. Please think before critisising others. Until you spend a day in their shoes, you can’t ever understand. Be kind.
Love, love, love. Hugs!
Love your comment and it’s great to see that Coopers mum who walks this path of parenting is honest and true about how things really are. I find many of the Autism sites everyone makes you feel bad if you wish your child never had autism. Well I can tell you my granddaughter has Aspergers she is smart, funny, loving and all the other wonderful things you can say about a child you love but I truly wish she didn’t have Aspergers because it would make her life easier and that of her mum and her siblings.
Amen!! Absolutely. Hugs to you.
This is a letter to Sawyer. A beautiful, happy, active boy who has a beautiful loving mother! I think that you missed the point of the letter. I heard from a mom struggling to juggle the needs of a special needs child with the yearning to create a normal life for her other child. She is very hard on herself! Please re read it with an open mind.
You have obviously not lived this life. Or u would feel her words.
Clearly you have NO CLUE what it is to have Multiple children and One or TWO of them in my case who have Autism to varying degrees… You truly have NO idea the DAILY we go thru… The highs the lows, The happiness the sadness, the sleepless nights the other kids feeling “left out” bc so much has to be given to the others… You have No idea how your reply Seriously hurt and ticked me off at the same time… Not too mention how you just made her, Myself and I Know soon many other parents in the same Boat feel!! Before you DARE criticize another, I humbly invite you to come stay with my family even for just a 24hr period and I Guarantee you will leave with an entirely New perspective and Mind set,. And Most importantly RESPECT…
You took the words right out of my mouth. Thank you. I couldn’t have said it better myself.
It’s been more than a year since the comment but still…to Kelli Smythe: bite me. Autism is no gift. And it is absolutely normal to grieve for what your children will miss, and what you will miss. Not doing so would indicate serious problems that would require the help of professionals in the mental health industry. I have three kids on the spectrum and it is damn hard! I love them with all my heart, but that does not make it any easier to raise them, and it certainly doesn’t make it any easier on their sibling who is not on the spectrum and also did not ask for them to be born with autism.
My oldest hates autism and wishes he didn’t have it. He is the gift. His siblings are the gift. Autism is not the gift. Without it they would still be smart, and funny, and caring. Maybe they wouldn’t see patterns as easily, but they also wouldn’t be unable to handle crowds, and wouldn’t have so many food texture issues, and would be able to tell me what they think and how they feel, play with other kids, and look forward to the kind of life so many “normal” people take for granted.
Every child on the spectrum is different, and every parent processes and handles the challenges differently. No one has a right to judge another autism mother’s journey. And if you don’t have a child on the spectrum, then why are you even on this website? There are enough critics to suck the joy out of the world, and joy is in increasingly short supply. Don’t be that person.
Delete this if necessary. Just had to get that off my chest. God bless you and your boys!
Wow. Your comment is in no way a reflection of how Kate’s put her beautiful story into such eloquent words and more about your lack of intelligence and reading comprehension. You, my friend, are an entire a**hole.
Please friends. How could one possibly criticize such a pure, raw and honest expression of joy, pain, love and anguish? Every word is perfect and yes, I am certain that there is sorrow and regret and determination and love at every moment for both children. Such is the life of a parent of a child with special needs. All of those things exist in every moment all at the same time and their incongruity opens up yet another flank in the multi-front war we are fighting. No one can criticize – we can only share and listen. We are all in uncharted waters.
AW!!! Great comment. Thank you!
Yes !
Thank you so much for this. And yes I definitely cried. I am a mom to a 4 year old severely autistic nonverbal little boy. And he is my world. My absolute everything. My husband and I have been thinking about having another one and we are so scared. This was really eye opening for me. So thanking you for sharing your experience with the world. My prayers are with you and your family
Truly heartfelt and beautiful. I have a 6 year old son with severe autism my other son is almost 4, I know the daily struggle all to well. Your letter touched me is so many ways.
Such a lovely letter to Sawyer! They’re so lucky to have a mom like you! I’m sure he loves his brother very much and will learn to appreciate all the little things that make Cooper so special. I too have a sibling on the spectrum and I can relate. If you ever have some quiet time you should listen to this podcast:
http://traffic.libsyn.com/byyoursideac/BYS_013.mp3?dest-id=28541
three sisters (including me) with brothers on the spectrum. We’re all much older than Sawyer, but we discuss our past and present experiences and hopes for the future.
I am the elder sister of a 61 year old woman with autism. I beg you, do not place on Sawyer so much weight. It almost destroyed me. Make sure you make provisions for Cooper’s future yourself and do not leave that difficult task to Sawyer alone when you are gone. I cannot express strongly enough how painful and frustrating it was when that happened to me. I care about my sister, and I am her legal guardian, involved in her life, but I still remember the bewilderment I felt as a child when my sister’s doctor urged on me the responsibility of being the sole helper/friend/playmate for my sister. Sawyer is a child. Let him be a child, please, not just a quasi-adult guardian of his brother. And when he expresses negative emotions towards his brother some day, and I would bet that as he grows older he will, please treat those emotions with understanding.
I love your comment. Thank you for sharing it. I think about it all the time. Hugs to you.
I would just like to second Sis2Lis comment. The current generation of Sibs (brothers and sisters of those with disabilities) have it a bit easier than those of prior generations, in that we are more free to discuss our family situations, disabilities have more awareness in the world, lawyers and financial planners have more tools at their disposal like special needs trusts and ABLE accounts, etc. But it can still be an incredibly isolating and overwhelming experience to be the Sib. I would urge you (in your copious spare time..haha) to find some resources specific to Sawyer, whether it is a SibShop, age-appropriate books that help you start discussing the situation, or just bookmarking the future planning sites to revisit when Sawyer starts asking deeper questions. There is video of me at 4 that show I have understanding that my brother is different and wonder about its impact socially, and I was clinically depressed by 10 in part because my questions, frustrations, and fears spiraled without a place to examine them.
I’m really not saying this to make you feel guilty or to transfer my feelings about my parents to you. You’re in an impossible spot with not enough hours or energy. I get that deeply. But you do have enough love, and there are resources out there for the Sibs, so I’m hoping that you connect with them. SiblingSupport.org is a great place to start. (And maybe you give a little poke to AS for the Cooper-centric edit of your blog? So glad I clicked through to the full version where your love for Sawyer really shows through)
Thank you for writing this!! I feel like I could have written this myself. Our son Owen has severe autism as well & we also have two “typical” children, one who is 4 & 15 months older than him, and one who is 11 months old & 2 years younger than him. I worry about him more than my other two & that is because I know they will be ok, but I also worry how his disability affects them. Thank you for writing this!! From one autism momma to another!!
The most beautiful, heart breaking letter I’ve ever read, literally have tears rolling down my cheeks, Your boys are both so very special in their own unique ways, Sawyer, beautiful name for the cutest little man, you are an everyday day Mum doing your utmost best in a life changing situation, having kids is life changing full stop, you write from the heart & it’s a whole world of emotions to read, I wish all the best for you all xxx
Thank you so much! Hugs!
So beautiful. We have a 5 year old son with autism and another son due in two weeks. I cried reading this and can relate so much. Thank you.
I got teary reading your letter to your younger son, so beautifully written and I know your son will treasure this. I believe growing up with a special needs sibling makes one a more compassionate person. For me having 2 sons that were both special needs early on there wasn’t that stark comparison, I don’t know what normal is to be honest. Thank you for sharing <3
Your letter is my life. I am the younger brother, now 29. This letter is very powerful and brought me to tears. Thank you for writing and sharing it. Truly save it and give it to your son when he is adult enough to understand.
Your comment. My heart is melting. Thank you.
I read your letter and I am still crying and the comments. We love our children and it’s just so hard and autism hurts it hurts so so bad.
Yes we do. We love them so much. And autism is so damn hard. It’s not and either or. Its both. Hugs to you.
Beautiful! I wish I could put my thoughts into words as beautifully as you do!
This makes me sad that my autistic son will never have a sibling. And I will never know what it’s like to experience many milestones. I’m just not sure if I’ll ever be able to make peace with that. It’s so hard. I am grateful for my son. But I get sad about so many things because of autism.
I totally get it friend. Completely. Hugs to you.
Dear Mom,
I read your letter today.
You should know that the person I am today is because of you, and because of my brother.
Know that I never resented the focus on him. Not really. I watched, and learned, what it means to love someone. To nurture them. To not only care for him, but to allow him to care for us. Not in the traditional sense, but in his way. Love is not a spoken language. He makes me laugh, deep belly laughs, and smile till the creases in my face hurt. He is pure, and the euphoria we feel when he is happy and with each small step forward is unlike any other joy. Being with him simplifies life to what really matters. Cynicism and self-absorption fade away. We experience life in full colour. Those are the times that make the grief, the stress, the anger at the world’s injustice seem unimportant, if only for awhile.
And those times you spoiled me? These helped me to learn to appreciate the sweet moments, and to take nothing for granted. That the chaos of life is tempered by levity.
You wondered how I would feel about my brother, now, as an adult. You never had to tell me what my role would be; I knew. There was no doubt. As I grow older, and you grow older, I worry too about outliving my brother, just as you do. He factors into my every decision. But it is not a sacrifice.
My best qualities are inextricably linked to my brother. I have an empathy and interest in others I would not have, without him. I understand the difference between treating someone equitably and treating someone equally. You taught me this.
In a way you could say my brother keeps me out of trouble. I don’t waste time on the wrong people. I have a list of qualities I look for in a partner because I am looking out for someone who will love us both. This may also seem like a sacrifice but it is not. I want a partner who sees the innate value in others, and who can move beyond fear to meeting him where he is.
He is a gift. He is the reason I now teach children with autism. When I was offered the job, I wondered if it was a good idea. Would it be too hard to work all day, sharing in the pain and joys of other families, to come home to ours? But then I realized: would anyone else love these students the way I do? Six years on, I have no regrets. And I want to change the world for my students. Which is why I am now getting my doctorate in autism education. Because the world is changing and everything he has taught me can be passed along to others. Because he really is the greater teacher.
I know there is a grief so deep in you that it is hard to get out of bed sometimes. But we are so much more whole than we would be without him. There is lightness that permeates the darkness.
He may not say it, and I definitely don’t say it enough, but thank you. I love you, for all that you have done. I am happy to help. I am grateful to help. I have been preparing for this for as long as I can remember.
Don’t worry, Mom, I got this. I got you.
This made me cry. I am sobbing. Are you the sibling to a special needs child?
Yes I am. My brother has Autism. Your letter could have been from my mother. Thank you for putting it into words.
Oh Kara! I loved it. Can I share it on my Coops Facebook page? I’d love too. If he’s, I’d love to know a little bit about you and your brother. You would help so many people. And it can by anonymous of course. But I’d love if a picture!! Let me know. Email me. swensonkate@yahoo.com
I also want to second this beautifully written piece. In case I accidentally came across judge-y or bitter in the comment above, this is the antidote. This is the beauty of a well supported Sib. Thank you for sharing.
I understand that feeling, Amy. I am miles down this road of autism…my son is 32. I wanted another child, but my then husband told me that he didn’t know how he would treat our son if he had a “real” child. He already pretty much ignored him, so that was the day I knew I would have an only child. It took a long time for me to find that peace…we divorced (he had a bucket list to fulfill and we weren’t on it) and I moved to a town with a wonderful special needs community. I have peace, and my son is thriving. I’m seeing milestones that I never thought I would see! Best part…He has friends and a social life that wears this 60 yr old mama out, but I wouldn’t change a thing!!!
[…] Kate Swenson is the mama to two rambunctious boys, one with nonverbal, severe autism. She shares a glimpse into their life in an honest and uplifting way at findingcoopersvoice.com and on Facebook here. Below is an excerpt of a letter Kate wrote on her son Sawyer’s fourth birthday. Read the full letter here. […]
Hi I can so relate to your story!!! My older son is 10 and on the spectrum and my 6 year old is typical. It’s so not easy! I work so hard to help my older one that my younger one, demands my attention as well. I have hired a babysitter for Saturday’s for my older one, so my 6 year old and I can spend the day together. My 6 year old is very happy with this arrangement! But if I’m honest I’m so tired. I wish I would have had my boys in my 20s. I feel like my energy is gone, but I just keep going. Sending good wishes your way 🙂
Hey! I love that you understand. Hugs to you!
Cooper needs to live in a servicehome when he turns 18. you cant ask this of sawyer, ita not fair at all.
Hey Sanda! Thanks for your comment. That’s a definite option. The reality is coops will live with a long as I can care for him. And at 18 his brother will still be in high school. The post is more emotional. A mom writing to her son. Not so much what will actually happen. Thanks for stopping by! Please continue to comment.
[…] few days ago I shared a letter I wrote for my son Sawyer. You can read it HERE. It was a toughie to share. It was brutally honest. It was real. And I really put myself out […]
I honestly have to say I cried the whole time uncontrollable, my son was diagnosed with mild Autism in September of 2016, before hand we knew he had a delay in speech we discovered it right before he turned 2 years old . At the time we thought that was all because he had months of speech therapy and he showed a great improvement due to reaching his goal but not for his age, so we did not think or want to think there was more to his delay. However as months went by we started to notice certain characteristics and behaviors in him that flagged us and made us realize that there was more than just speech delay. After so many therapy visits and follow ups, finally the Neurologist told us it was time to run some diagnostic and blood test, but that he believed that our son has mild autism. Well all the test came back negative so we thought that was wonderful news and got ourselves ahead and immediately thought well our son does not have this disorder, but later on at the follow up visit the Neurologist reconfirmed even though the test were negative my son had characteristic and behaviors of autism. Well at the time I took it in well and said well since the beginning we have been taking the proper steps early on with the therapies and taking time with him at home teaching him, words, how to use words, getting him educational toys, books, taking more time with him so we are ready for this, but reality hit me after reading your story I broke down, I want to be strong at all times and not show my children and family any weakness through this process of really accepting it, but I’m hurting not because he has it but because I love him so much and we live in a cruel world and I just want to be there every moment and second of his life, I feel if I’m not there someone is going to judge him, mistreat him and not understand him because of the ignorance unfortunately many adults have to this disorder. I praise you for being so strong and for sharing your personal story of your family’s life not everyone has the courage to do it. Thank You!
These are constant fears of mine. My SN daughter has a twin brother who is typical and then we had a surprise baby a year ago, also typical. We didn’t know that Harper had any issues until they were about 1, so I didn’t really appreciate all the normal/typical things that babies do until having our third – and she has absolutely saved me. She has the happiest spirit and I thank god every day for giving me such a light. And I feel that her happy spirit is exactly what our family needs to help cope and keep perspective on the difficulties we will face with Harper.
Hugs to you friend!
This is beautiful – and honest and raw and it made me cry huge sobbing tears. I have a 17 year old severely autistic son and while he is my second born (my daughter is three years older) so much of this is applicable to her as well. Their birthdays are one week apart – in fact, my due date was her third birthday but, because we learned my son had severe brain damage and I started not eating or sleeping, he was induced a week early. My daughter is an adult now and is off at college and I feel like I missed so much of her life. I also feel like that constant concern about whether she will care for him while I hate to even think about it, is there all the time. I just started a blog and am still trying to figure out how to put myself and my family out there. Thanks for showing me the beauty in vulnerability.
You are well spoken, eloquent, and everything you say is raw and comes from the heart. People relate to that. You really should write a book about your experiences (even if it takes years to do it). I guarantee it would be a best seller.
Hey Kate! Found your Facebook page today, then your blog and now this post. I read this letter from the perspective of a sister of a 15-year-old boy with severe, nonverbal autism. There’s 10 years and three sisters between me and my brother, and I know that after 15 years of everyday autism, my parents feel the weight of these words– particularly my mom. I know because in adulthood I’ve become my mom’s biggest supporter. We siblings of autism grow up knowing exactly what it is you go through, and we love our siblings as they are, just like you do. We went through the years and years of diaper changes (they passed!), the destruction at every turn and the public meltdowns. My brother has drawn blood on my arms and face, kicked and bit to the point of bruising, and created holes in every surface of my parents’ home with his head and feet. It’s h-a-r-d. But I love him still. And when my mom needs to cry on the phone to me about something insensitive a friend said about her parenting, or a hard day at his school, or even how she fears the future, I listen to her without judgement or pity because I totally and completely get it. I’m writing this to you to say that while you may worry its an undue burden to be an autism sibling, we got it the same way you did. We’re in it with you. It’s hard to see the grace in it sometimes, but I promise its there. And there’s no resentment (none that lasts after the short little selfish pangs, anyway), only love and support. My mom is my hero. I’m sure you’re Sawyer’s, too, and I know for a fact that you’re Cooper’s. I hope that’s encouraging in some way. Hugs to you!
Beautiful! I have a 15-year-old son with special needs and a daughter who is 16 months. I love this letter. Thank you 🙂
Omg I literally cried reading this. Instead upon this website during a google search glad I did this will be bookmarked. This is beautiful
This post has me in tears because as the sister of a special needs brother, I have to just say thank you. My brother passed away two years ago and that moment was the beginning of a brand new life for my parents and I. It was the first time we realized how altered our life had been up until that point. The guilt you feel, I get it. I’m 24 now and any moment my mom and I are alone she apologizes over and over again about how I didn’t have a normal childhood. Your son’s experiences will be different but they will make him stronger, kinder, and a more concious human being. He’s going to be just fine and if anything, he will become a better human being because of his brothers illness. Thank you for this post.
I found this in a web search of, “I wish I wasn’t autistic” and right now I feel bad about being autistic and i wish I was never even born. My mum had to work a 78-hour week with three jobs to pay for my therapy. She had to let my grandparents raise me 6 days a week so she can work. I wish I didn’t cause her so much trouble. She could have gotten her degree much faster and easier. She could be living the dream right now, rich, having fun. I wasn’t even supposed to be here in the first place, I was a mistake. I realize that I’m on the opposite side of the spectrum of Autism described here, the very bright, capable, camoflagable-type, but I indeed feel sorry for myself and my mother. I was crying when I read this and it made me think of my 6 year old brother, and myself 15. He has exceptional social skills for his age, even though he isn’t very smart academically. Whenever I see him socializing with his peers normally, seemingly catch on to nonverbal cues that I can’t even recognise, and just be developing typically social-wise, I think about how much of a horrible kid I must have been to my mother, even though she said I was, “The sweetest baby ever! You never cried at all and you never talked and you just slept, and you were reading with a word chart and sign language at age 2, and you read biscuit books to yourself at night at age 4, reading at a 2nd grade level!” I would think about how my life would have been developing typically. Probably waaaaay better. My mum was probably hiding all the little things she hates about me even though she is notoriously known for her apathy.
This was not meant to offend anyone, this is just my personal input and how I relate to this.
Kate, you should be a writer, you have a way with words and the boys so lucky to have you, and you having them. Sawyer is such a sweet boy. Thank you for sharing your most private thoughts…I think this group has been a blessing for so many of us, to learn about Autism, to help so many not feel alone and have support, a community or village, or tribe. You have been so generous with us and know how much appreciated.
Funny how I bumped into you page, Cooper had locked you out, and you were waiting for Jaimie to get home…… and now I’ve learned so much. Prayers go out daily for you and your family.
Reading your words was like an echo from my own heart. I also have a child with autism, and then a second child who does not have autism. There have been many times when I had to tell her she couldn’t sing because it would cause a meltdown. Or she would have to walk next to the basket at the store while her much older brother rode standing on the front because that’s what it took to get through the grocery trip. So many things to be thankful for, to feel guilty over. I just have to hope and pray she knows how loved she is, how much she is appreciated, and how much her brother loves her, too.
My life and experiences have been very complicated, bits and pieces mesh together and dissolve, it’s very rare I’m able to find someone with a similar situation to mine, whether older or younger, so I don’t usually go too far into details past. “Yeah he’s 6’5″ 210, and kicks like a mule” But there are so many things I could talk about, so many things I want to explain to people, especially the ones who preach without experience.
But this is what I feel is most important to tell you, and your son when he reads this article.
I’m the middle child between a girl 3 years older than me, and my non-verbal autistic brother who is a year younger.
What you’ve written here, I can very easily relate to both sides, both as a care giver and the forgotten child.
There are some stigmas you might not be aware of yet that he’ll face.
When I grew up, the schools upon learning about my brother, continuously tried to pin me as autistic.
Autism awareness has come a very long way, but regular teachers, who are not properly educated to deal with special needs children, are often entirely ignorant, and not able to properly deal with those connected to them either. I also understand where the guilt as a mother comes from, and I can’t say I have never blamed my mother for her mistakes that could have been avoided, but I know that she was still learning too.
For some reason my mother did not know the school my older sister and I went to would not accept people with disabilities, enrolled him without ever mentioning his disability. She had to move him to a different school upon finding this out, But the damage was done. The school, the parents of other students, the other students, all of them knowing about my brother, this lead to nearly my entire primary school life, to be a constant source of pain.
For the year I attended that school without him, I had never had an issue, never had a fight, I was a little sensitive perhaps, but not anything out of range to be a regular 5 year old.
But that starting point on my first day of grade 1, all the way to my parents divorce, turned me into a very jaded and cynical person. It wasn’t even until the year of the divorce where the bullying and fighting died down a bit, but it never really went away until we left the area in the last month of grade 8.
I was scared, I was terrified of losing the only one or two friends I’d ever had, the ones who stuck by me even if I didn’t really like them that much. But I gained so much more.
I was suddenly the super interesting popular new kid, never having any sort of positive attention for so many years made this extremely terrifying, I started having a shaky and happy set of confidence, I started feeling I could be myself, there was no more weight of this hatred towards me that I could never understand.
There were even girls that were interested in me, quite a few of them actually, and one of them walked with me to my house one day while I was in the bliss of being interesting.
My brother, wearing nothing but a diaper walked up to her, said “princess” and kissed her on the forehead then walked away.
My heart dropped further than my stomach, she stood there terrified and confused.
I was angry, angry at how stupid I was for believing I could have normal interactions with people.
I didn’t even want to walk her home, I just wanted to die. I walked them home, we never talked about it on the walk, we never talked it later on, and for the most part, we just never talked.
I knew from that point, that even if I was ever happy, I’d have to be very careful.
I don’t advertise my brother, not because I think people will be terrible, but because I’d rather know how people really are.
We ended up moving a second time, but this time around most everything that ended up going wrong was only my own fault, and that was a very big relief.
With work, I knew I could fix myself and my own faults.
I’m still working on those. 🙂
PS: my sister has two young boys, both of the pregnancies terrified the entire family, especially her.
both my nephews are happy young boys, though I have concerns about what they think of their 210 6’5″ uncle who walks around in nothing but his boxers.
I’m terrified of having kids myself as well, and that’s a stigma I don’t think will ever leave me, no matter how rational I am about it.