This is Beautiful. From a 10-year-old Boy with Autism.

I was scrolling through Facebook today and this post jumped out at me. Let me preface by saying that at one point I liked so many autism type blogs and organizations that now my whole damn news feed is autism. I’ll be honest. That’s depressing. I’ve actually started unfollowing some. It just got to be too much.

This one jumped out at me by the National Autism Association.

A mother writes, “My 10 year old son with Asperger’s was asked to write a poem for school titled ‘I Am‘ he was given the first 2 words in every sentence. This is what he wrote…” Here is his poem.


My heart breaks reading this. I can’t imagine what these kids and adults with autism feel. The loneliness. The feeling of being different. What it’s like to always feel out of place, like a castaway.

As parents we would do anything to take away our children’s pain. And the sad truth is that isn’t always true.

If could crawl into Cooper’s brain and world I would in a heartbeat. There are times when I sit next to him and try but my little peanut doesn’t stop moving. Since the day he was born I’ve never had him for more than five seconds. That’s tough. So I need to remind myself that when he shows me a train or a video I need to stop and pay attention.

When The Caregiver Gets Depressed

IMG_4978There is a stigma around depression. A really, really ugly one. And I think there is especially a stigma around mother’s who have depression. If you are depressed you are weak. You are broken. You are medicated. You cry a lot. You sleep a lot.

This isn’t true. At least not for me.

I am not weak. I am freakishly independent. I am not broken…completely. I am not medicated. And I rarely sleep.

In saying that….

I just came out of an extremely low few days. Sadness is not an accurate description. I would say I was depressed. Although the joke is…”if you can ask if you are depressed than you probably aren’t.”

It usually centers on Cooper’s health. His history involves many years of chronic ear infections and severe constipation. Cooper’s pain tolerance is so high that his pain manifests in him not sleeping, eating and eventually hitting and aggression. If these behaviors start it’s a puzzle to fix him. And doctors and yelling and begging. And me saying the sentence, “Quality of Life” so many times I could barf.

I have a child in pain and I can’t fix him. That’s heavy. Then add in no sleep. Teachers and therapists telling me he is acting different. The pressure is on.

And I love him so unbelievably much.

Then I start to spiral.

I am a ridiculously strong mother of a severely autistic child and I get so depressed that sometimes I can’t see straight. Or think straight. I push every single person away from me. I become a martyr that will save my child. And protect him.

And oh my God is that lonely. There are days when I can’t stop thinking about how I am going to die alone caring for this boy.

As mothers we are supposed to be invincible. As a caregiver it’s even harder. I was given a battle in the form of a child. A fight that I didn’t ask for.  A fight that I will fight until the day I die.

And in the process I lost who I was and a whole lot of hope and sanity.

I believe I went a little crazy. And as I sat across from Cooper’s dad yesterday I apologized for being heartbroken. And for fighting this fight in this way. It’s the only way I know how to do it. And I apologized for not being strong enough. And for being broken.

I am not a doctor or a therapist. I am not an expert in autism. I wasn’t given a special class on how to handle autism. I was thrown into it. And I am doing the best I can. And sometimes maybe I come onto strong. Or from the wrong angle. Or maybe too aggressively. But it’s the only way I know how too.

Caregiving for a special needs child has given me a depression I don’t want to admit is real. Because if I do I am showing a weakness I am not allowed to have. And in a way I am admitting how hard it is.

We don’t have time to be sad. We don’t have time to get help. We give so much of ourselves to these little humans and to our jobs and spouses that we couldn’t possibly take a moment to be sad.

Caregivers are seen as strong. As fighters. As invincible.

The funny part is a true caregiver doesn’t have time to seek out counseling. I am often asked by people who truly care about me, ‘how am I handling Cooper’s diagnosis?’ And I don’t have an answer.

I really don’t.

I survive mostly. Every few days there is a new behavior. A new appointment. A new form to complete.

But God I am sad.

I am so sad. There are days and weeks where I am fine. There are days and weeks where it’s hard for me to get out of bed. But thankfully I have a little two little boys that need me to get up.

There are times where I can’t hear another child’s voice. Countless nights where I dream of him talking.  Times where I will agonize over Cooper and all the things he will never do. Times where I will actually rip up paperwork and say Fuck it.

There are minutes where I stare at Cooper and wonder what he is thinking. How I would do anything or give anything for him to talk to me. Engage with me.

There are times when I am changing my almost 6 year olds diaper and I will literally tell myself I am a failure. I will get poop on my hands. And poop on my floor. And more recently poop on my bedding…three nights in a row.

There are times when I need a break from Autism. And there are people who have made me feel weak because of that.

They are assholes.

There are times when I have blamed God. I am so unbelievably angry that he gave me this child. What did I do to deserve this? Why me? Why my family? I am working on the God thing. I am. It’s coming along.

There are days when I break down and cry and wonder how I am going to help this kid. How am I going to know if he is in pain? How do I get doctors and therapists to listen to me?

There are days when I blame all the family and friends who don’t help Cooper. Who don’t take the time to get to know him. They are also assholes. And that is part of the journey. Recognizing that not everyone can be part of my autistic kids life.

Blah, blah, blah. Depression is real. Recognizing depression is good. And being a caregiver is so hard. It makes me feel invisible. I guess that’s why I write. I need someone to know what I am doing for this little boy. Not to get a thank you or a pat on the back. I just need someone to know how hard it is to keep going every single day when all I want to do is give up.

I don’t have time for therapy. And I don’t need medication. But as a caregiver I need to stop being so hard on myself. I need to take a break once a while. And admit when I are heartbroken.

I admitted it yesterday to a very important person. And when he held my hand and told me I was doing a great job I immediately felt better. The weight had been lifted a little.

I’m not sure if the depression will ever go away though. To be honest I wonder if it will get worse as Cooper gets older. The milestones are only getting bigger. Who knows? Only time will tell I guess.






Love This

I needed this today. I got so sad and frustrated today I blamed Cooper in my head and heart for making life so hard. Truth is that he has no idea. It’s not his fault. He’s just a sweet, happy, challenging little boy who’s sleeping in my bed as I type this. He will snuggle me until hopefully 5 am when it will start all over. It’s exhausting I tell you. But it’s no ones fault. 

To the Parents of Special Needs Kids: I See You

I want to give a shout out to the parents living every single day with a broken heart.

Parents who are caregivers for life.

Parents who wash their child’s feet and picture what this will be like when they are 25. Or 40. Or toenails. Or haircuts. Or when their child needs to start shaving.

To the parents that worry about life after High School. And their own retirement. And after they die.

Parents who fight with doctors. And schools. And fight for some form of simplicity and joy.

Parent’s that fight for any scrap of normalcy.

Parents that drink coffee all day. Parents who physically collapse at the end of the day. Parent’s who make daily lists with things like: Get prescription, call the county, call social worker, email the school, order diapers, attend family therapy, find a new GI doctor, charge the IPad, charge the Kindle, etc., etc., etc.

Parents that can’t describe the shrieks that come of out of their own child’s mouth. Parents that can’t describe the haunting sounds that they hear all day. Or how many times they say, ‘turn the iPad down. Or parents that actually cry when the internet is down. Or the battery on the iPad dies.

Parents who wake up every morning and have no idea how they are going to get through all of the appointments and work and life.

But they do it.

I see you. I see that you are dying. And I understand. Trust me when I say I know the agony that is literally eating your heart and stomach.

I get it.

I see that you are operating off of no sleep. And you know what real exhaustion feels like. Because it’s not just being physically tired. It’s so much deeper than that. It’s caring the weight of a special needs child. It’s in your soul. It’s indescribable.

I see you smiling when people stare at your child. I see you.

It’s opening up their backpack and seeing work that the teacher has clearly done. Knowing that your child would never color like that. Or cut pieces of paper.

It’s seeing your child’s school picture and seeing that their disability is no longer hidden.

Your child has special needs. It’s right there in an 8×10. It’s wanting to rip up the picture and run and scream and hide.

It’s getting angry at the teacher for the bad picture knowing in your heart that getting pictures of your kid is impossible.

It is crying the whole entire way to work and wiping off your eyeliner before you walk into your desk.

It’s putting your headphones on because you can’t talk about autism for one more second.

It is getting emails from the school about Fun Runs and Movie Night and Play Dates and knowing your child won’t participate in any of them.

It’s wanting to volunteer at the school but knowing when you see all the normal children you will feel like throwing up.

I see you. It takes an unbelievable strength to have a special ed child that is part of public education.

I am so sorry. It is terrible. You you hate yourself for being jealous of everyone else.

It’s joining groups like the special education advisory council because you don’t fit in at the PTA. It’s feeling like Special Ed is tattooed on your forehead. It’s feel disabled yourself.

It’s hating the other parents and the children.

It’s real. And it is so raw.

But you go. You go to the events. You attend the meetings. But you do it all with a lens of special ed. There is a constant reel running through your head saying, “my child can’t do that. We can’t do that.”

That takes real strength.

It’s the pit in you stomach when the teacher emails pictures from school and your child is never in any of them. And you get it. You really do. Your child is too disruptive. They are too difficult. They are lost somewhere in a dark room.

It’s not being able to say how your child is doing in school.

It’s wondering every day if you should quit your job and home school your child.

You are raising an invisible child.

And you wonder if you should give up. 

You get it. I get it. We together get it. It’s the world that doesn’t.

It hurts. Oh my god it hurts so unbelievably bad.

And you look normal every day. You get up. You fight a whole battle before work. But you make it there. And you smile. You laugh.

I see you friend.

It’s hearing other children talk to their parents and laugh and smile and enjoy typical activities.

This is for the moms and dads that put on a smile every single day and pretend that it doesn’t matter.

It’s hating their small little voices because you have never heard your child’s.

This is for the parents that give up every single day and wake up the next morning to try again.

That is strength my readers. Walking through every day with a broken heart and breaking down in your car.

I just want you to know that you didn’t do anything wrong. I think that every day. Not a day goes by where I don’t blame myself for Cooper’s disability. I must have done something wrong.

And the never ending feeling of not doing enough. I feel it too.

And knowing you will carry this weight until you die.

I get it.

I just want to say….I see you. And what you are doing is incredibly amazing. And you are doing it all with a broken heart. A broken spirit. And the weight of the world on your shoulders. That my friends is strength.

You are fighting giving up. And I am so proud of you.




Having the Only Autistic Kid at the Party

Morning all,

My blog post was featured today on Break The Parenting Mold. Break the Parenting Mold was founded by Jen Kehl and Kristi Rieger Campbell in 2016. It began with the dream of bringing a large amount of resources together to help parents of children dealing with special issues.

Anyone that follow my blog knows that I am utterly obsessed with this video by Kristi Rieger Campbell. I watch it all the time. I can’t even watch it right now because I will start crying. That woman is my spirit animal.

Anyhoo, give them some love. Great resources. Here is a link to my post, ‘Having the Only Autistic Kid at the Party.‘ So excited!

I wrote this a few years ago: “You will be crushed the first time you notice people staring at your baby. And you will be crushed the first time you noticing kids teasing him. The hurt is inevitable and it’s not going away. But don’t hide. Autism is already lonely enough.”

Holy crap that is still true. Cooper still flaps and jumps and rolls. And holy moly is he loud. We have taken nonverbal to a whole new level. But he is happy. And he finds joy every single day. And we keep going. We go to parks and stores and do our thing. And we put on the thickest skin you could ever possibly imagine.

The Uphill Battle of Being a Caregiver

img_6835I cried on my way to work this morning. Not because I was sad.  I cried because being Cooper’s mom turns me into someone I don’t like. I feel trapped. And alone. And so utterly overwhelmed. And like I need to make threats to make his life easier.

I don’t ever feel like I’m doing enough. Or the right thing.

The special education system is a constant uphill fight with a 200 lb pack on your back and no food or water. Nothing comes easy. Not one part of it. And I feel like an animal that has been caged into a corner to protect its kid and I need to fight my way out.

Dramatic? Maybe. But it’s the truth. Not one change or decision in Cooper’s special education life has come easy. Every part is 23 phone calls, 17 emails, 5 people, a dozen dead ends, and then picking yourself up and starting over.

This is the part of being a caregiver that is the hardest. Fighting for services. Fighting for equal and fair rights. Fighting for a sense of normalcy.

And it’s not always the people. We have dozens of people in Cooper’s life that are amazing. They are working to help him and give him the best options around. I think it’s more the system. The system is broken.

So what happened.

Cooper’s bus driver pulled up this morning and greeted us with a smile. He is the nicest man ever. He told me that Cooper still doesn’t have a ride home. He’s like, ‘I can take him. I’ve asked the officer every day if I should bring Cooper home and I get no response.’ He’s like, ‘I obviously won’t leave him but you should call in and see what’s going on.’

This came after Cooper woke me up at 4:45 am. And after I had a standoff with Sawyer over his breakfast that involved a time out, a thrown remote and a brotherly brawl.  And after I got Cooper dressed for his school pictures knowing that he probably won’t take one. And won’t be in the year book. And after I wrestled Cooper’s kindle out of his strong, sticky hands and after he gave me a kick to the stomach so on point it took my breath away. And after we waited in the front yard for the bus for 12 minutes because it was late. And no one on this earth will ever understand what a bus being late does to an autistic kid.

So, when the bus driver told me that Cooper STILL didn’t have a ride home after I’ve made 7 phone calls and sent 3 emails, and filled out a form, all starting two weeks ago, I knew I was going to lose my shit.

I piled Sawyer in the car, put a movie on, and made the call. And was promptly transferred 3 times after explaining the situation 3 times. And I was friendly all three time. I know that being nice and sweet will get me farther than being a bitch. I’m not an idiot.

It just doesn’t make sense to me.

My kid, a student in the school district, needs a bus ride home. He’s not a gremlin. He doesn’t need to be levitated. Or have a limo bring him home. He needs the damn bus to bring him home on Tuesday’s and Thursdays.

Yes, I called 2 weeks ago. Yes, I called a week ago. Yes, I filled out the form. Mind you this form is only needed for special education students. Yes, the form was signed by his case worker. I didn’t even know we had a case worker at school. Yes, the form was given to his teacher. Yes, I called three times last week and yesterday. Yes, the bus driver confirmed to me that he can bring Cooper home.

Her answer, ‘we still do not have transportation home for your son ma’am.

And then I lost it. I demanded to know why this is so difficult.  I’ve been calling for 2 weeks. I’ve spoke to a dozen people. I told her I’d go to the damn school board if my kid didn’t have a bus ride home today. I can’t make one more phone call about this or ask one more time. He is a kid that needs a bus. Put him on a bus.

In my head I was thinking I will go so far up the school board ladder I will be camping in the damn president’s front yard. Try me lady. I cannot leave work early again to pick up Cooper from school. I have a job. That I’m going to lose.  I just can’t. I also need to him to be on some sort of set schedule. This needs to happen. Please, please, please get my kid on a bus home. Please, help me. Wah, Wah, Wah.

And my voice broke.

As I hung up she reassured me she’d take care of it immediately.

And then I dropped Sawyer off at daycare. He clung to me and screamed and cried and said he missed me and wanted 7 more hugs and 2 kisses. His words, not mine. I felt terrible.

And I got in my truck and completely lost it.

Why? I want to know why it’s so hard for these kids. I want to know why I have to become absolutely batshit crazy to get any sort of response. It just doesn’t make sense to me.

I am a calm person. I am a problem solver. I am patient. I love my son. I love his people. So why?

I had a phone call within 30 minutes saying that Cooper’s transportation was all set up and good to go.

And that’s great. So happy. So relieved.

But why does it need to get to this level?

Why does being his mom bring me to this level of crazy that I didn’t even know was possible. With Sawyer I feel like it’s all so easy. Good things happen for him. He’s an easy going kid and he’s popular. He’s happy. He loves his daycare. He will go to kindergarten. He will play sports. He will make friends.

With Cooper it’s just different. And that’s so not fair. His life is hard. He is hard. Being his mom is hard. And the system is hard.

The system is broken for caregivers. I’m not saying I know how to fix it…but I know there needs to be a change.


I Do It For Me

14249202_1443892728954516_912775185_nWell, he’s off to his first day of school. The bus driver and aide were amazing. They pulled up, opened the door, and shouted out….’is there a Cooper here that needs a ride to school?‘ Cooper of course turned and ran the other way laughing and giggling. So, in true Swenson fashion, I brought him flailing and kicking to the bus. He was in good spirits though.

I gave the aide a handful of starburst for the ride. Also, true Swenson fashion. We believe in bribery here.

I’m super worried about his first day. He doesn’t do well with new situations or new people. He also did not have a bond with his teacher. Not in any way. That scares me. Lots of firsts for him as well. All day school, multiple classrooms, school lunch, trying to eat ‘typical’ food and drink from a straw, a bus ride home. So much change. Fingers crossed.

I can’t imagine being nonverbal in a new setting. Not being able to speak or ask for help. His only form of true communication is screaming and sometimes hitting his head or kicking. How, as a mom, do I know that the teachers are going to love him and be patient with him. I don’t. I have to trust that an autism, special ed teacher is doing this profession because they love children. And love helping them succeed. I have to pray. Because that kid can’t tell me how his day went. He can’t tell me if he was ignored. Or bullied. Or yelled at. I am at the mercy of the school.

And that my friends is damn scary.

I hugged Cooper goodbye this morning and whispered in his ear….’Be brave sweet boy. You got this.’ And he laughed and laughed and gave me a good squeeze.

I know he will be fine. In 2 weeks this will be good. He will make it.We will make it. But until then we are on a roller coaster ride. I know his sleeping will suffer. He will regress in potty training. He will lash out. His aggression will soar.

It should level out though.

2 weeks. Fingers crossed.

I took pictures this morning of his first day. I wasn’t going too. This is his 3 year of school.

I laid in bed last night and scrolled through Facebook and looked at all of the adorable kids starting school. Huge smiles or tears or whatever. New clothes. Proud parents. So much excitement. Cooper doesn’t care. I’m not entirely sure he even understands.

So, last night,  I told myself I wasn’t going to make a sign. I wasn’t going to put it on Facebook. I wasn’t going to make a big deal about it. Because, I was just doing it for myself. And I knew it would be a fight.Getting the pictures would be impossible. I’d get stressed. He’d get stressed.

I kept thinking, ‘why do normal things for my autistic kid?’ No one cares. He doesn’t care.

I woke up this morning and I felt terrible.

I felt like a terrible mother.

And I made the sign. And I took the dang pictures. And they turned out perfect. 66 tries and a package of Starburst can get you anything in this home.🙂

He’s adorable. God he’s cute.

So why? Why do it?

I do it for me. I take these pictures for me. I throw the birthday parties for me. I pretend for me. I selfishly pretend that he is going to be ok….even just for a few pictures.

My baby started kindergarten today. We did it. No need to pretend about that.

I am the mom of a kindergartner. And that is why I made the damn sign.