My Worry as an Autism Mom and Why It Never Rests

Parenting a child with special needs is so much more than helicopter parenting. It is never taking your shoes off, being ready to run, casing every room, knowing every exit and danger, being drenched in sweat, never sitting, searching your child’s body for marks or bruises, up all night worrying, parenting. It consumes me at times. And deep down I worry that it is destroying me.

It’s not like it happened overnight. It was an evolution. I am a pretty chill person. My kids fall and I wait for the severity of the scream and their reaction before I dive into mom mode. I believe in walking it off. Letting kids fall of bikes. Leaving a little skin on the field.

That’s the person I am…or was…or trying to be with my 4 year old. But as much as I wish I could just relax and sit back and watch Cooper play I know in my heart it isn’t possible.  He is constantly in danger.

I am an autism mom. I am caring for the most vulnerable of children. I am his eyes, ears, brains. I am one step ahead of him at all times.

And because of it I am slowly driving myself bonkers.

My worry never stops. At any given time I can tell you all the given dangers in a room. I know when Cooper has something in his mouth. I know when he is going to run. I know where he is going to dart to. I count the exits. I know every item that can be thrown. My shoes are laced up. I am in comfortable clothing. And I am ready to chase my kid if needed.

Trying to describe the emotional weight of caring for an extremely vulnerable child is impossible…but here is my attempt.

To The Parent of a Newly Diagnosed Child:

Hiya there friend,

Your child has just been diagnosed with Autism. I heard about you from a friend of a friend. Or maybe you found me on Instagram. Or you emailed me at 1 am as you were frantically googling autism in the middle of the night.

I see you. I understand what you are feeling. I was you. I am you. You are going to look to me for hope. You are going to search through hundreds of blogs until you find the one that sounds like your child. Maybe that’s Cooper. And maybe it’s not.

I know you are in shock. Even if you knew deep down that something was different about your child you are still in shock. Hell, Cooper was and is completely nonverbal and there are days where I still think he will snap out of it.

When I walked out of Cooper’s diagnosis appointment I felt every single emotion possible. We waited for 7 months for that appointment. The day came. The appointment happened. We got the diagnosis. We left. I cried. Everything was immediately different yet exactly the same. I was not the same woman that walked through the front door of Fraser.

I was an Autism parent. A special needs parent. I had a label. I was immediately different from other parents. I felt like it was tattooed on my forehead. I immediately questioned everything I did during my pregnancy. I hated my body for failing this child.

I felt every single emotion possible. As I am sure you do too. But they are flying at you so fast you can’t actually make out one from another. It’s a flood.

Relief. Sadness. Confusion. Isolation. Fear. Embarrassment. Anger. Desperation. Grief.

I wanted to take my beautiful baby and run away to a cabin in the woods. I think I actually tried to figure out a way where we could move to a remote part of the state. I wanted to hide. If I hid him this would be fine.

I could outrun Autism. I knew I could. No one had to know.

This is called fight or flight.And it’s the grossest feeling ever. It’s not logical.

I get it friend. You are an autism parent now too. A special needs parent. You are in a group. A group that you don’t want to be part of. And you feel more alone than ever.

I know how you feel. All these emotions are flying at you and you don’t know how to manage any of it. And to make it worse you still have this super challenging child. Then add in everything you’ve ever heard about autism from Google and your mother’s sisters friends daughter. There are buzz words like Medical Assistance, Social Workers, Case Management, Financial Aide Workers, and IEP. The list goes on.

The advice is pouring in. Random friends of friends are emailing you. Your Aunt is tagging you in an autism post on Facebook. GO GLUTEN FREE. CUT OUT DAIRY. VACCINATIONS, VACCINATIONS, VACCINATIONS, PROBIOTICS, ETC., ETC.

But the oddest feeling of all is how the world keeps going on around you. You are different. But yet your child is not. They are the same.

You went to the appointment. You got the diagnosis. You left the appointment. You told Grandma and Grandpa. You tried to answer questions. You cried. You hugged your spouse. You talked about the unknown future. You drove home. You fed your child dinner. You gave your kiddo a bath. You put him or her to bed.You hopped on Amazon and ordered 5 books on autism. You joined a special needs parenting group on Facebook. You googled ‘Autism and Hope’. You got into bed. You cried some more. You thought about the day.

You spend hours wondering if the psychologist was wrong. You immediately Google, ‘Autism Misdiagnosis’ and find a wonderful blog post about a child cured from Autism. And you think, ‘this is going to be fine. This will be fine.’

Then your child will completely and utterly throw you for a loop. Or maybe you will see them next to a peer and the blatant differences will scream at you.

This is real. This is happening. And you can’t outrun it.

You will look at your baby and see the exact same child you did pre-diagnosis. Nothing has changed.

All of a sudden you hate the term Autism. You think if you hear it again you might scream.

Can you say it out loud yet? Can you say, ‘my child is autistic.’

It took me a year to be able to say my son has autism to a group of people. Even to this day it still sounds odd when it comes out of my mouth.

This will sound crazy to you but a day will come when you will tell someone that your child has autism and it will be a good thing. That sounds ludicrous right now. Just believe me. The day will come and you will say it and you will see understanding in a strangers eyes. And you will be thankful that you can explain to people why your child is hitting them self in the head. Or rolling on the ground screaming.

In a super weird completely messed up way that word is now your ally. But you aren’t there yet. So don’t think about that please.

If you are anything like me your first thoughts post diagnosis are ‘what now? You need a plan. A focus.

The night after his diagnosis I needed to research. I needed to stay busy. I needed to fix my son.

I want to tell you that I did it all wrong. I put way too much pressure on myself and my marriage and most of all Cooper.Well, maybe not all wrong. But I was so panicked. I didn’t have the best support system and I isolated myself. Cooper’s dad would say I became a martyr.

So, here is my advice to you as a newly diagnosed parent:

  1. Grieve. Feel every single feeling.
    Be sad. Don’t force yourself to be happy. Don’t lie to yourself either.  You pictured your child in one way and now you know that may never happen. Do not let anyone tell you that you shouldn’t be sad. Or that it could be worse. Do not listen to any stories about people that have it worse. Do not feel guilty for being sad. If I had a quarter for every time I felt sad and heard a story about a mother that lost her baby or childhood cancer I would be a zillionaire. People do this because they don’t know what to say when talking to a grieving person. Feel every feeling friend. Just sit in it for a little bit.
  2. Take time to process.
    Nothing is going to change right away. I thought that our lives would change immediately once we knew if our son was autistic. I was wrong. It took months for us to see any effects of the diagnosis.  There was no medication. No magic pill. Honestly, there was no hope given. There was a label. A diagnosis. A heavy title. And I felt every ounce of its weight. By the time we hit the car I was already on Google trying to find out how to fix this. As a result I did too much too soon and it left me feeling extra anxious. I was making phone calls and raising expectations. I wanted to do as much as possible. How does that old saying go…I was throwing stuff at the wall to see what would stick. Don’t do that. Just process.
  3. Wait to tell people until you are truly ready.
    I told way too many people about Cooper’s autism appointment. I immediately regretted that because I didn’t know what to tell them after. I was scared. And was too sad. I also had no answers. I didn’t know how to answer people’s questions. Still to this day people ask me if Cooper is going to talk. Or they ask what his future looks like. HELL IF I KNOW. I wasn’t prepared for people’s questions and they made me feel so much worse. I was too sad to help them understand Autism.
  4. Don’t expect anything to change right away.
    I really believed in my heart that our lives would begin to change the second we got the diagnosis. If the universe had any idea what it did to me to physically go the appointment they would’ve saved me right away. But life doesn’t work like that. Nothing changed. We walked in there with Cooper. We walked out with Cooper. We told close friends and family the news. That was it. We knew nothing more, nothing less.
  5. Find other Autism parents.
    Finding other parents changed my life. Blogs helped. Facebook groups helped. I joined an Autism support group. Reach out.
  6. Get ready for a fight.
    I know this sounds funny. But it’s true. You are now the sole care advocate for a vulnerable child that most likely can’t communicate. You are going to fight battles that you didn’t even know were out there. You can do this.

Grief is not linear my friends. You are going to have highs and lows. Cooper will be 6 on Tuesday. The severe parts of his Autism are getting more evident. His sheer size alone is a lot. I still grieve. Just when I think we are settling into a routine or have a win a new behavior will develop. Kicking. Pushing. Putting small objects in his mouth. Tearing apart beds. Knocking over lamps. Climbing on cupboards. The list goes on. We add in therapies. We change strategies. I have one meltdown to every five of Coopers.

And you know what, that’s OK.

I want to tell you that you have the strength to do this. You will become stronger than you ever thought possible. Your skin will get so unbelievably thick and you will become the strongest advocate for a vulnerable child. That’s pretty amazing if you ask me.

You don’t have to fight Autism. Or carry the torch against it. But you do have to fight for the best services possible for this little person that is completely and solely dependent on you. And good god friend you will feel isolated and alone because of this child.

I know it’s not the life you planned for. I won’t blow smoke up your butt and say that this one is better than the one you pictured. I won’t lie to you ever.

But what I do know is that you can do this. You are not alone.

 

13606606_1381994731810983_7112512195913157613_n

 

 

 

A Letter to the Family and Friends of An Autism Parent

Dear friends and family,

13606606_1381994731810983_7112512195913157613_nI am sitting here thinking about our relationship. And about how much I love you. And how I rarely see you. We joke that it’s because life is so busy. We have jobs and babies. Life is crazy. And how some day it will be better. We will have more time. One of these days we will actually get together and do something.

I’m not sure if that’s entirely true though…at least not for me. We are different. We are friends. We are family. But we are different. And we dance around it like it’s not true.

I want to say I am sorry. I am sorry that I don’t make plans with you. I am sorry that I won’t commit to doing anything. And mostly I am sorry that I cancel.

I feel it too. God I feel it. I feel the strain between us. And I miss you.

I know that I am not the woman you remember. I am different. I used to be so much fun. I was up for anything. I know that many of you questioned if I had Post-Postpartum after my son was born. I heard the whispers.

Just to be clear….I didn’t have it.

I didn’t fit into your world anymore. I would like to say that it evolved slowly over time. But that is not true. It happened all at once.

It happened the day Cooper was born. Before that we were the same. College, wedding preparations, baby preparations. I was you. You were me. We were young. We were blissful.

Then wham. I was different. I had a label. I was an autism parent.I immediately carried it on my shoulders. The weight was more than I could handle at times.

When our children were younger it was one thing. My baby didn’t sleep. Yours did.  He never stopped crying. He was chronically ill with ear infections and constipation. I was tired. I couldn’t speak about anything besides how my child was NOT autistic. I saw how you started to miss me. I saw how I started to slip away. Don’t think I didn’t know it was happening. I was part of every second of it.

But I could pretend then. We would trade stories of other mothers we knew who went through the same thing…and it turned out fine. They were fine. I was going to be fine. This was going to be fine.

You’d find a blog post or a news article and send it my way. We agreed it wasn’t autism.

Then the differences got more noticeable.

My life was suddenly doctors and therapies. I couldn’t relate to you anymore. And you most definitely couldn’t relate to me.

It was like I was in a movie. I watched myself turn invisible right before your eyes.

My child was different. Yours was not. Your child met milestones. Mine didn’t. Your daughter said her first word. Mine didn’t.  Mine screams and hits. Yours does not.

That is the blatant truth. We can dance around it. You can say that you are OK with Cooper. I hear it all the time from friends and family. I know you love him. We all do.

But my son is different than yours.

And I want to say that I am so sorry.

It’s truly not you. You are a wonderful friend. And I love you. But I slipped away and I don’t know how to come back.

I am sorry we don’t come and visit. The preparations for a visit to someones house are epic. Do you have a fence? Do you have WiFi? Do you have other children? Pets? Do you care about messes? The list goes on. Snacks? Sippy cups? Milk? In a sense I still have a newborn. A 60 pound newborn that can do some serious damage.

And I believe it when you say that you love Cooper. You don’t care.

But I do. I care. I care about parenting in front of you. I care that I can’t sit and talk to you because of Cooper. I care that I wake up at 4:15 am. I care that I got poop on your floor while changing my 6 year old.

The truth is….I care friend. We are different now.

You don’t have a label. You are not in my club. You are different.This is why I turn to other ASD parents. They get it. They are my people.

And now my baby is almost 6. We still don’t visit. You still wonder why.  And my friendships and relationsips still suffer. Some of you held on and for that I am so unbelievably thankful. You still text. And call. And some even visit. You force me to do things. To get out of the house. To have a life.

Thank you. If I haven’t said it to your face I want to say it now. Thank you for being my friend. Thank you for showing up.

In the back of my mind I wonder how long you will hang on. When will it be too much?

I know it kills you when I always say no. And even worse when I cancel last minute. I want you to know that I am always tired. Sometimes I can’t even put into words that level of my exhaustion. It’s more than physical. It’s pure mental exhaustion.

I want you to know that I wake up every day happy and with the best of intentions. And by the end of the day sometimes I can’t see straight. It takes all the strength I have to shower and go to bed. That was actually a joke. I rarely shower. It takes all the strength I have to just go to bed. To shut my brain off. 

I will go on Facebook and I see that you signing your daughter up for gymnastics.Or maybe it’s t-ball this time. I guess whatever activity a 5 year old does these days. I will see their smiling faces.

I will feel the pain in my stomach. I am over here researching special needs strollers for children. I am trying to figure out how I am going to pay for it. And how I am going to be strong enough to bring it out in public for the first time. How do I find one that won’t stand out. Or make us look too different.

What you are doing isn’t wrong friend. It’s amazing. I am so happy for. Your children are beautiful. You are beautiful.

I’m just not there.

I need you to forgive me.

I know I don’t always answer your texts right away. I rarely check voicemail’s. And I often don’t call back.

I need you to know why.

It’s not you. It’s me. What a cliché right?

I know you don’t know what to say about Cooper. You don’t know what to ask. Or how to help. I feel it too. And that’s OK. There is no right or wrong.

I am letting you off the hook friend. Autism isn’t your world. It is mine.

But you need to know there are other reasons.

There are weekend days when Cooper will whine all day long. It will start at 4 am and go until 9 pm. There is no break. The sounds are so loud. They are nonverbal. They are high pitched. It is more like screaming. It is anxious. It is loud. By the end of the day I am an open nerve.

If you truly know me you know that I always have music on. It’s always playing on my phone. It’s constant. I do it for two reasons.

I can’t take the silence. I can’t take the lack of conversation with my almost 6 year old.  And I can’t take the sounds that are constantly coming out of his mouth.

When the day is over and Cooper is in bed I will stare at him. I will sit by him and wonder how we made it though another day. A day exactly like the one before. And it will be the exact same tomorrow. I will feel more exhausted than I ever thought possible.

I will go in my living room and sit in my chair in silence. I will think about how he is living completely inside his own head. Isolated.

I am isolated too.

His disability has isolated us both.

I sit and enjoy the silence.

I do this because I can’t take one more sound. This is when I should turn to friends. But I can’t. I can’t go out. Because I know it will start all over the next day. And the next.

This is isolation of epic proportions.

I want to thank you for standing by me. And I want to ask you to not give up on me. Your children are going to continue to grow and thrive. There are times where I think Cooper and I will be in the same exact spot. Please remember us.

We are trying so hard to fit into your world. And I love you.

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.

98a9c2dbff2b28b9231023b370270c0d

 

 

 

 

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.

img_6771

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 third 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.

14237493_1443644222312700_3777058677139407192_n

I Am So Proud Of Cooper…

img_6738As someone affiliated with Autism I have noticed if I browse through Pinterest or Facebook or any of the dozen support groups I am part of there is often a common theme….having a special needs child changes your life. Or defines you as a parent. Or teaches you lessons and makes you a better person.

I’ll be honest. I don’t feel that way yet. I haven’t ever actually. Every day is more like an episode of Ground Hogs day. He typically wakes up before 5 am. My anxiety about him waking up kicks in around 4 am. He will crawl into my bed and immediately snuggle me. It’s nice. I love it. Until he starts rubbing his feet on me. He can’t stop moving. I typically last 15 minutes and we are up. He immediately wants milk…that needs a laxative it, a snack…which has to be in a bowl. He needs the Kindle immediately. He wants the TV on..hopefully there are no WiFi issues for Netflix. If there are he watches the DVR. Either choice takes 5 minutes of choosing a program non verbally. I shush him 47 times because his brother his sleeping. I then lay back down. He will come in my room every 20 minutes like clockwork to change his show or because the Kindle locked up. He needs more snack. He pooped. Peed through.

And so the day begins. The same way it did the day before.

Every day is the same.

Kindle, trains, videos, DVD’s, VCR’s, so much poop, fighting over food, being chased by diapers, repeat. I typically ask him to turn down the sound on the Kindle over 100 times. No lie. By 5 pm I am screaming it. I’m not saint. I am human. I have a breaking point.

And to make it worse…I will beat myself up emotionally because I don’t feel like I’m doing enough. Or making a big enough difference. Why don’t I feel special. Or like I am changing the world by raising this kid. Why hasn’t he changed my life yet.

My point is that the special moments are hard to come by. I often forget that Cooper is a real kid. Yes, you read that right. I am honest. With no communication and very little interaction I just forget. So when I received a note last week from one of Cooper’s therapists I literally dropped to a chair to read it. And then I read it again. And again. And sent it to Cooper’s dad. And then I ugly cried.

The kid she described was so different than the kid I knew. Maybe I forget that he is out in the world for 8 hours a day….interacting. He isn’t a robot. He is a kid.  How did I not know that my kid is growing up? He is developing. Slowly. Ultra slowly. But still developing.

I give up every single day people. I start off strong. But by the end I am worn down and sad and exhausted. And with kindergarten starting I am sinking a little lower.

I think this note means more to me than anything so far in my sweet boys life. Cooper made a difference in someones life. He touched them. I am so proud of him.

Here is her note.

img_6667

“Kate! Thank YOU! I was so humbled to receive the card and gift card from you. Hearing from you this morning made me realize, a few days in, that I have somehow MORE to say that didn’t make your card. Babbling is a real skill of mine.

There is so much I will miss about working with your Cooper. It’s hard to communicate my daily joys with him via take home note (I often do not have time to write them until we are out at big gym) but there is so much that I looked forward to when he walked into the room. So much of Cooper cannot be reduced to a form note, so I hope you don’t mind if I tell you a little bit about our days together that never made those notes.

We started nearly every day with him running across the room and literally jumping into my arms or lap for a hug. No matter what my morning was like or my mood, I was so changed by those hugs and his head curled up on my shoulder.

Every day for the last few weeks he asked me for a laminated Thomas picture by saying “choo choo!” and imitating someone pulling a train whistle. It was the absolute cutest. His ingenuity and problem solving when it comes to nonverbal communication always amazes me. He loves when I whisper the Elmo song in his ears so he can be tickled by my breath and when I blow on his hair. I taught him to use his iPad to request “I want to see” if he wants to look out the window with me at the light rail and trucks. He loves to identify everything driving by with the words on his iPad and loves when we count or talk about the colors of cars.

Cooper put his arm around another child during music group the other day. It is someone he frequently has a mutually aggressive relationship with so it was really amazing to see them sitting so kindly together.

Cooper loves to sing a number song and then indicates it is his turn when he wants me to switch from “1 little 2 little 3 little numbers” to “1 little 2 little 3 little Coopers.”
He loves to look at himself in the mirror and dance and he loves alphabet puzzles. I taught him that his name and my name start with C, and now whenever we come to that piece, he looks at me expectantly. He loves animals and labeling them with his iPad on hallway walks. He loves hearing what letters various things start with, like “w is for window” and “d is for door.” He knows the intonations that accompany facial expressions and thinks the gravelly angry “GRRRRR” voice is the funniest. If we could sing “baby bumblebee” forever, I think he’d be happy, but is very partial to Pete the Cat as well. Sometimes when it seems like he’s been in the bathroom for an awfully long time, I peek in and he’s standing at the door listening to music playing in the other room. He particularly loves “Make a Man Out of You” from Mulan.

When Cooper and I take hallway breaks, he loves to be rolled around in a barrel. He also likes to peek back through the window into the classroom before we go back, and finds my staff photo on the sheet outside the door and points at both it and me. I am continuously amazed by the extent of his understanding.

We used to build tents out of giant mats and he and I could sit in there peacefully for 20 mins. Same with sitting under a giant blanket. He was never content to be in there without me, always pointing at me with the clearest message that I was supposed to sit in the 800°, airless fort too.

I am so proud of Cooper. I am so proud of the few things my inexperienced self taught him. I am so proud of the battles we fought that felt sometimes like they would never end and of his inability to hold a grudge. It amazed me every day that he saw you walking down the hallway and ran to you. His level of love and compassion amaze me and move me.

It has been a strange few days realizing that my life at Fraser will consist of a lot of kids cycling through my life. It has been hard realizing that someone with a sentimental heart like mine will have a difficult time working in a career where I grow to love kids and then they move on. I ache to help them all, but mostly so, I ache to soothe parents like you that worry you are not doing enough. I know finding babysitters and helpers and nannies must be difficult, and that you have to feel isolated and limited. I hope if there is anything ever that I can do for you, you remember how much I love Cooper, and that the privilege has been mine this entire time.

I chose years ago to work with kids with autism, but for me it is a job, and one I can leave at the end of the day. I don’t know if I’m articulating well, but I know your day to day is so so hard and you are thanked so infrequently and that you can’t clock out at 4:30 every evening and take a nap. I know how much your life has changed because of Cooper and I just want you to know that you are inspiring.

I found your blog via FB and it’s made me equally laugh and come close to tears. I have never heard anyone talk as honestly as you do and I know you are a beacon of hope and faith for so many parents. So often, as a society, we don’t like to talk about the true emotion and challenge that comes with autism. It is so much easier to just post inspirational quotes.

Over the years I know so many more people will fall in love with your son. He is SO. DAMN. CUTE. And he is so sweet and inquisitive. He has so changed my life and I can never thank you all enough for that.

Sorry for throwing so many words at you twice in a row now! I’ve never been the best at getting to the point. My mom kindly calls it “diarrhea of the mouth.” Nothing like a mothers love!

Part of me wanted to write all of this down so I never forget the little joys he and I shared every day. All of my coworkers in room 8 referred to us as “best buds” and it is sad to see my little friend go. Thank you for being gracious and allowing me to stay in touch with you all! Your family is so special to me. Happy Labor Day! Hope Coop lets you have a drink or two and watches some Little Einsteins. ❤️❤️

 

caa5533ac588ddfd8489b75d60ff0000