I wish..

Some days just completely destroy me. Its one thing after another. I know there are all these memes that go around in the facebook world that us autism moms and dads are so tough. We indure all things are we are pretty much unstoppable. But its just not the case.

So often Typical parents and even family member's will say to me things like.. I don't know how you do it, your so brave to take on all you do, or wow you sure have a lot on your plate.

Sometimes I cannot do it all. Sometimes I hide behind closed doors. Sometimes I want my child to be normal. 

Sometimes when I see my niece doing sports, or seeing in choir I hurt. When I see children younger than Tyler reading and writing. When they are forming sentences and having sleep overs. Sometimes I watch him sleep and just cry. Cry because of all the things he is going to miss out on. All the conversations we will never have.

I have trouble making friends, and doing things outside our normal home and routine. Things I wish he could do. We could have so much fun. We could go to get togethers, parks, outings of all sorts without him becoming hostile as he goes off his normal routine. 

We could have normal conversations he could tell me things he likes and hates. He would tell me what he wanted to do today and where he wanted to go. He could tell me kids that get on his nerves and who his best friends were. He could help me plan his birthday party and pick out his favorite theme. 

I sit inside this dark place sometimes and just wish I could change everything by the snap of my fingers. It isn't always like this but yes us autism moms and dads wish our children didn't have the struggles they do. They wish they could have the life of what your normal is. We wish we could have conversations and cerebrate without having to pre-plan every moment. 

I love my son. I just wish his happiness wasn't a struggle, and knowing his thoughts were visible. I wish we could have a more in depth relationship. I wish he could tell me how his day was and just everyday things that typical parents take for granted. 

I feel envy towards others and how easy it comes for them. I wonder while they don't know the slightlest clue of what we go through on a daily basis they are so easy to judge this life they don't understand.

Four months I will never get back

I consider myself a damn good mom. It wasn't always this way though. We've been through a lot. We have conquered many things in our journey together. 

This one part of our journey is hard to think about let alone speak of. Its almost like a piece of hidden past that no one dare bring up or go near. Its something I push to the back of my mind in order to forget. It was only a nightmare. It couldn't have been real. 

And this folks is where I fell apart.. When Tyler was first born I was a good mom. I was married things were going well. It wasn't until I realized what I was up against that it all fell apart. I ruined my marriage, I ran away from everything I once knew. My family, my friends, my life, it just didn't exist anymore. 

I ran away inside and became the mom I never wanted to be, or thought I could have been. When my son was diagnosed there was no support, no awareness, no help, or any kind of anything.. there was just me and doctors giving me no hope. There was just me and Ty and me wondering if I could take on the world..

Autism hit me hard and sent me into a very dark place. Almost like a mid-life crisis. I was in a world I couldn't face. After splitting up with my husband I spent a lot of time running and doing what I wanted to do. I cared more about myself than I did my son. This went on for a while. I was running away. I had lost my heart. I had lost my soul. I had lost myself.

During this period of time my son was intubated. It was a rough winter and he wasn't breathing well. I remember being outside of his room looking through the glass. I remember it was over Christmas. A Christmas we would never get back. I felt disgusted with myself. I wondered was this it for Tyler? Was this it for me as a mom? Had I really failed? Who was this person looking back at me in the mirror. I spoke to God that day after not speaking to him for a long while. I begged him to not let me be a replica of my past.

Mothers like this person I began to really hate. Maybe it is because I hated the person I was. I had a father who was never there for me. A mother who moved away from me and left me with my grandparents. I had felt abandoned most of my life. I won't do that to my son. Tyler doesn't deserve that kind of life.

Something was said to me that really pierced my heart and made me ultimately wake up. My ex husbands father said this to me one night.. you done playing mom? I would go over for nightly visits and stay til he had fallen asleep. I said excuse me? He said it again are you done playing mom? It was at that point I said to myself yes I am DONE playing mom. That is what I spent those four months doing, playing mom. I wasn't being a real mom to my son. A real mom puts all her selfish needs above her child. Not when it is convenient to her.

Fast forwarding a few months I was given a second chance. A chance to be a mom again. The mom I wanted to be. 

He became my life again. He showed me what forgiveness is and how important I was to him. He showed me my heart and showed me what unconditional love it. I spent all my time searching for this love, the love that would make me feel whole again. I never knew that love, is the love I had left behind.

Looking back now during this time that I lost myself I can still cry, I can still hate myself. To me it is like a nightmare that wasn't real. That could never be me. Even though it was only for a short period of time I still feel very guilty for ever allowing myself to turn my back on my child. This child who is my everything.

This was me finding myself. Without Tyler I would never be the person I am today. If I could change one thing about our life together it would be that I would have been a better mom. Four months I spent running, four months I spent with my back turned, those four months I will never get back.

Nothing left to give

Some days I feel so alone. Who is there to talk to?
Who is there to listen? Who is there that understands?

I live in a society where my child isn't worth your time.
I live this life where being strong is viewed as being a bitch.
How much of life can I take on and how strong can I be before I break?

So much judgement when people look at me. Have they once considered
all that I go through on a daily basis? Do they consider how difficult it has
been for me and Ty with everything he has been through? Or do they even care?

It is sad that I feel so alone that I cry when no one is around, that I am so broken.
Who would once look beyond my perfections and really be a true friend to me?
Someone I can confide in and trust.. Someone who will not say mean things about
me when I'm not around..

I have this good heart that no one takes the time to know or to understand. I am left
feeling emotionless at time because I have nothing left to give.

Different

This year is going to be different.
This year my son is going to speak in sentences.
This year my son is going to grow in so many ways.
This year I am going to push him harder than I have before.
This year we are going to find the things that make him the happiest.
This year I am going to do my all to make sure he gets all he needs.
This year I am going to stop holding my son back.
This year I am going to let my son shine.
This year everything will change.
This year is about new beginnings.
This year I will not longer be afraid.
This year WILL be different.

Celebrating the imperfections

The past week has been very difficult.

We have had an extreme rise in meltdowns. Extreme rise in attitudes. Extreme rise in neediness. It has been difficult but that is what we deal with. We have our greatest days and those days when we can't wait for bedtime. I have not been praying for my son, and my family like I should. I started crying yesterday from missing my family back home so much. I can honestly say after 7 months I haven't really had a good cry. I am one of those people who will keep everything in as long as possible. Yesterday I broke down after listening to a beautiful song by Jesus Culture called "Your love never fails". I know that no matter what is going on in my life God has a plan for us and I need to start praying that he shows me the way and to be grateful for what we have, and all that my son has accomplished through this.

Tyler is showing me how smart he is. He is breaking out of his shell. For a child who had little to no improvement the first 4 years of his life has shown tremendous change in the last 3. He has gone from no words to showing me small sentences.

He was whining for me to get up this morning saying HELP PLEASE.. I held my ground. I said no, Tyler tell me in your words what you want. I said I want.. He looked at me and thought to himself for a moment. Than he says I.. want.. Ice-cream!! I had to let him have some ice-cream after that even if it was 11 am. I am really pushing him here lately for words. I know he has it in him!

Heart break

Woke up this morning to hear of 19 firefighters losing their lives.

As I lie there listening to the news I just imagined what I would do if my husband never made it home. I can honestly say I have never known love til that of a fireman. All he gives of himself to his community, and to his brothers with an unexplainable passion. They are a completely different breed. At times I don't understand what makes them the way they are. Why would you want to purposely put yourself in harms way? They make the decision each day when that page or alarm goes off to rush in while others are running out. They make a decision that saving someone's life is more precious than their own.

I think about the families affected by this tragedy. All the wives, all the children who received the news that their husband, or their daddy would never make it back home. It is so devastating the heartache their families, and friends are going through today. God be with them and show yourself to them in this time of need.

Communication

The day my son was diagnosed they told me many things. They said your child definitely has Autism, he may never be potty trained or talk, he may need care for the rest of his life. You need to prepare yourself for that. I think this is one of those heart breaking moments you will never forget. Knowing that your child is different and may never be able to do things the other children are doing or will be able to do.

At that point in time I knew what Autism was but I didn't quite understand it. But I knew I couldn't sit around and sulk in self pity. I began my search for extra therapies, and pushed his school to the limits. Since they didn't see it fit to give him extra help or therapies. You know because the school isn't a "daycare" Yes you heard me right. DAYCARE. Hmm do you ever wish you could go back in time. I would have so much more to say to those people now. I would love to meet with all his teachers, aides, and therapists so they could see just how far hes come.

Anyhow, Tyler will be 7 in a short month. This has been the year of the Tyler. He has mastered so many things. He can write words. He can identify words, and pictures. He is learning to say short 3 word sentences. He is learning to communicate.

I think I take for granted all he can do and how well he does communicate. I get so frustrated though, it seems the older he gets the harder his own frustration becomes when he cannot communicate to me what he wants or needs. He just gets to the point where he has had enough.I just wish there was something I could do to help. I am trying to learn his cues. I try to listen very carefully to his words. It is so difficult. I feel like if I was better he wouldn't have such a hard time. What am I doing wrong? What could I do to better? What is he trying to tell me? Please make me understand Ty.