Ramblings of an Autism Mom Around Acceptance

My favorite topic to blog about! I’ve been noticing a trend. Every morning for the past few weeks I wake up to dozens of emails from parents looking for hope, help and guidance.

I TOTALLY UNDERSTAND.

I did the exact same thing when Cooper was younger. I would stay up late…usually after some sort of meltdown or a particularity hard day. And I would search for a blog where the child reminded me of Cooper. And  I would reach out. And in a really weird way I would feel guilty for reaching out to a stranger. But it was so much easier to say all of my worries to a stranger. If I said them in real life it felt too real. I felt like a traitor. I felt weak and embarrassed.

First, keep emailing me. Keep reaching out. It’s good for you and and it’s good for me. I enjoy hearing from you.

Second, I spent the day thinking about how I got to the well rounded peaceful place I am today. BAHAHAHAAAA! That was a joke. I am a mess. But I am a mess who smiles and laughs and is mostly at peace with her place in life.

How did I get here?

I gave into Autism.

Let me say that again. I gave into Autism.

I gave up the perception of what I wanted life to be. It was really hard at first.

I wanted to go out to dinner and join friends at events and go on family vacations…but, unfortunately, we couldn’t do those things. And the second that I accepted that I was able to relax and find peace.

Check out my video. I give more details. Hugs to all of you!

Seeing Your Words on a Computer Screen

12924577_1297285863615204_7815923785730277894_nI wrote a post a few weeks ago about depression. I didn’t really share it around. I kept it kinda private. It’s very hard to be honest in real life about depression. Even today as I read my repost on Breaking the Parenting Mold I struggle to believe I really wrote those words.

They are pretty raw. And vulnerable. I am almost embarrassed by them. And worried that people are going to judge me.

But, sigh, they are the truth. And I worry about sharing them.

Here is the post: The Stigma of Being s Special Needs Mom with Depression

Grief is a very large part of my life. I spend much of my day managing grief. Pretending it’s not real. Accepting it. Justifying it. Burying it deep down inside.

I had a pretty great conversation the other day about ‘choosing joy‘ above all things. Waking up and deciding to be happy. I want to do that every single day. I strive for that my friends.

This week I am doing great. Last week was pretty good too. Cooper is healthy. The appointments are down. We survived conferences and therapy and his last round with the GI doctor. We survived a broken kindle and Halloween. He is sleeping in until 6 am these days. He is eating. He is giving more and more hugs these days.

Today I am OK.

But the depression is always there. Brewing under the surface. I can feel it at all times. It’s a weight on my back.

As I drove into work today I was chuckling thinking about my two sons trick-or-treating last night. They were each a riot in their own way. And I will tell Cooper’s Halloween story here when I have time.It’s pretty great.

My mind started to wander as I thought about winter approaching. And Cooper’s birthday. He is going to be 6.

Cooper’s birthday is a very low time for me. He is a December baby. Add in two holidays and the stress of autism and expectations and you have the perfect combination of parent depression.

December is bad for me.

Age 6 and no words. I will start repeating it and analyzing it. I’ll do it for miles while driving. I remember thinking that at age 2, 3, 4 and 5 that soon he would be talking. Everybody talks. Everybody speaks.

What does 6 and nonverbal look like? What does 10 look like? And I’ll keep going. A teenage and nonverbal. A man and nonverbal.

It will cycle through his life. Flashes and glimpses of his future. Until I put a stop to it. And fight to stop thinking about sad things.

Today I am OK.

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Follow me on Instagram to see a glimpse into life with a nonverbal ASD child.

 

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.

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