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.

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Photo Credit: Melanie Houle Gunderson

I want to tell you something.

You saved me buddy. I want you to know that. You were the best thing that ever happened to me. 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.

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Photo Credit: Kacie K Photography

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.

I know you didn’t ask for this. I didn’t either. But you have been given a responsibility. Some call it a gift. Some call it a box of darkness. You are a sibling to a boy with severe autism.

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Photo Credit: Kacie K Photography

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  • rgemom

    February 6, 2017 at 6:58 pm
    Reply

    What a precious, sweet, treasured, deeply-loved little boy.

    • Sonya
      to rgemom

      February 10, 2017 at 2:14 pm
      Reply

      I cried as well ... while eating my scrambled eggs. The tears wouldn't stop rolling even as I continued to go on abt eating […] Read MoreI 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. Read Less

    • Rosalie
      to rgemom

      April 14, 2017 at 1:42 pm
      Reply

      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 […] Read MoreYou 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. Read Less

  • Julie

    February 6, 2017 at 7:25 pm
    Reply

    Lovely story

  • Radka

    February 6, 2017 at 10:04 pm
    Reply

    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 […] Read MoreOh 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. Read Less

  • L

    February 7, 2017 at 2:06 am
    Reply

    I cried reading this. You are so eloquent. Sawyer is just the cutest boy ever (besides mine, natch).

  • larva225

    February 7, 2017 at 12:55 pm
    Reply

    ???

  • lucycoe

    February 7, 2017 at 8:39 pm
    Reply

    Love this, so beautifully written, honest and true. Happy birthday Sawyer! ???

  • Kelli smythe

    February 8, 2017 at 2:28 pm
    Reply

    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 […] Read MoreThis 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. Read Less

    • findingcoopersvoice
      to Kelli smythe

      February 8, 2017 at 2:48 pm
      Reply

      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 […] Read MoreYou 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! Read Less

    • jesselam
      to Kelli smythe

      February 8, 2017 at 6:35 pm
      Reply

      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 […] Read MoreShe'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. Read Less

      • findingcoopersvoice
        to jesselam

        February 8, 2017 at 8:48 pm
        Reply

        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 […] Read MoreAMEN 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! Read Less

    • pianoplayinmama
      to Kelli smythe

      February 8, 2017 at 6:52 pm
      Reply

      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 […] Read MoreFindingcoopersvoice 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. Read Less

    • Teresa Kelly
      to Kelli smythe

      February 8, 2017 at 7:41 pm
      Reply

      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 […] Read MoreThis 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. Read Less

    • L
      to Kelli smythe

      February 8, 2017 at 8:41 pm
      Reply

      What a self righteous, asinine thing to say! How can you presume to know how much this woman loves her son?? BTW, when […] Read MoreWhat 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. Read Less

      • findingcoopersvoice
        to L

        February 8, 2017 at 8:45 pm
        Reply

        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 […] Read MoreNo 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! Read Less

    • 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 […] Read MoreKelli 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. Read Less

      • Love, love, love. Hugs!

      • Beez
        to picklehead1wigglebum1mum

        February 12, 2017 at 1:16 pm
        Reply

        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 […] Read MoreLove 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. Read Less

    • Shelley Johnshoy
      to Kelli smythe

      February 9, 2017 at 10:10 pm
      Reply

      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 […] Read MoreThis 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. Read Less

    • Sonya
      to Kelli smythe

      February 10, 2017 at 2:16 pm
      Reply

      You have obviously not lived this life. Or u would feel her words.

    • Jennifer
      to Kelli smythe

      February 14, 2017 at 1:36 am
      Reply

      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 […] Read MoreClearly 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... Read Less

  • D.C. Houder

    February 8, 2017 at 7:10 pm
    Reply

    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 […] Read MorePlease 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. Read Less

  • Leah mercauto

    February 9, 2017 at 2:54 am
    Reply

    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. […] Read MoreThank 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 Read Less

  • Ashley

    February 9, 2017 at 4:19 am
    Reply

    Truly heartfelt and beautiful. I have a 6 year old son with severe autism my other son is almost 4, I know […] Read MoreTruly 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. Read Less

  • Lizze

    February 9, 2017 at 4:58 am
    Reply

    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 […] Read MoreSuch 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. Read Less

  • Sis2Lis

    February 9, 2017 at 6:40 pm
    Reply

    I am the elder sister of a 61 year old woman with autism. I beg you, do not place on Sawyer so much weight. […] Read MoreI 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. Read Less

    • findingcoopersvoice
      to Sis2Lis

      February 10, 2017 at 4:18 am
      Reply

      I love your comment. Thank you for sharing it. I think about it all the time. Hugs to you.

      • Kalyn
        to findingcoopersvoice

        February 12, 2017 at 3:20 pm
        Reply

        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 […] Read MoreI 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) Read Less

  • Melissa

    February 9, 2017 at 6:54 pm
    Reply

    Thank you for writing this!! I feel like I could have written this myself. Our son Owen has severe autism as well & we also […] Read MoreThank 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!! Read Less

  • Zoe Dennison

    February 9, 2017 at 8:29 pm
    Reply

    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 […] Read MoreThe 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 Read Less

  • Kristen

    February 9, 2017 at 9:29 pm
    Reply

    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 […] Read MoreSo 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. Read Less

  • Lisa Geng

    February 10, 2017 at 1:25 am
    Reply

    I got teary reading your letter to your younger son, so beautifully written and I know your son will treasure this. I believe growing […] Read MoreI 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 Read Less

  • Jeff Channy Rasmussen

    February 10, 2017 at 2:43 am
    Reply

    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 […] Read MoreYour 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. Read Less

  • Bassy

    February 10, 2017 at 3:18 am
    Reply

    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 […] Read MoreI 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. Read Less

    • findingcoopersvoice
      to Bassy

      February 10, 2017 at 4:08 am
      Reply

      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.

  • nicole lemcke

    February 10, 2017 at 3:31 am
    Reply

    Beautiful! I wish I could put my thoughts into words as beautifully as you do!

  • Amy

    February 10, 2017 at 3:31 am
    Reply

    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. […] Read MoreThis 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. Read Less

  • Kara Dymond

    February 10, 2017 at 3:51 am
    Reply

    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 […] Read MoreDear 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. Read Less

    • findingcoopersvoice
      to Kara Dymond

      February 10, 2017 at 4:17 am
      Reply

      This made me cry. I am sobbing. Are you the sibling to a special needs child?

      • Kara Dymond
        to findingcoopersvoice

        February 10, 2017 at 12:17 pm
        Reply

        Yes I am. My brother has Autism. Your letter could have been from my mother. Thank you for putting it into words.

        • findingcoopersvoice
          to Kara Dymond

          February 10, 2017 at 12:35 pm
          Reply

          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 […] Read MoreOh 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 Read Less

    • Kalyn
      to Kara Dymond

      February 12, 2017 at 3:26 pm
      Reply

      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 […] Read MoreI 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. Read Less

  • Sara Green

    February 10, 2017 at 4:12 am
    Reply

    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 […] Read MoreI 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!!! Read Less

  • […] Kate Swenson is the mama to two rambunctious boys, one with nonverbal, severe autism. She shares a glimpse into their life in an honest […] Read More[…] 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. […] Read Less

  • Jen

    February 11, 2017 at 8:56 pm
    Reply

    Hi I can so relate to your story!!! My older son is 10 and on the spectrum and my 6 year old is […] Read MoreHi 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 :) Read Less

  • Sandra

    February 12, 2017 at 11:54 am
    Reply

    Cooper needs to live in a servicehome when he turns 18. you cant ask this of sawyer, ita not fair at all.

    • findingcoopersvoice
      to Sandra

      February 12, 2017 at 1:13 pm
      Reply

      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. […] Read MoreHey 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. Read Less

  • […] few days ago I shared a letter I wrote for my son Sawyer. You can read it HERE.  It was a toughie to share. […] Read More[…] 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 […] Read Less

  • Yolanda

    February 13, 2017 at 2:20 pm
    Reply

    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 […] Read MoreI 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! Read Less

  • Amanda Strasburg

    February 22, 2017 at 7:52 pm
    Reply

    These are constant fears of mine. My SN daughter has a twin brother who is typical and then we had a surprise baby a […] Read MoreThese 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. Read Less

  • Stacey Cummings

    March 17, 2017 at 1:49 pm
    Reply

    This is beautiful - and honest and raw and it made me cry huge sobbing tears. I have a 17 year old severely autistic […] Read MoreThis 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. Read Less

  • Kellie Honaker

    April 14, 2017 at 3:44 am
    Reply

    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 […] Read MoreYou 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. Read Less

  • Chelsea

    April 14, 2017 at 3:11 pm
    Reply

    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 […] Read MoreHey 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! Read Less

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About Me
About Me

Hi, I'm Kate. I am the mother to a little boy with severe, nonverbal Autism. This is a glimpse into our heartwarming, sad, scary, funny, loving and secret world. Check out my video tab to hear me ramble about Autism.

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Confessions of A Special Needs Parent
Confessions of A Special Needs Parent

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