One day I woke up and he was different

Our journey has been pretty comfortable the last few years. Not that it has been easy but we have gotten to know one another and we are close. There is a friendship, I know when hes going to break, I know when he needs a break and without words we are able to communicate. I, most of the time had not let him get to the point of no return and I certainly never felt like he was out of my control. He wasn't too hard to handle or difficult. Things hadn't always been so smooth but I think after getting to know my child, understanding autism and his reaction to things you kind of grow to know your child better than you even know yourself. One day things were just different.

Different.. not in a good way. He was very combative, he was angry, any little thing would set him off. He was not the little boy I mentioned above. It was like all those years getting to know him and being so close.. it was all over. I was lost. I was emotional.. I didn't understand. I worked the past 8 years trying to battle through and figure this out to get to the place where I didn't know him anymore. Hell was real. I was getting hit on not just a daily basis but around the clock. I was starting to fear him a little bit. That look in his eyes, it was not my child. I started to feel not less for him but I just felt completely distant. I would spend my nights crying, I felt so depressed, so helpless. It was enough that he had to battle autism but now hes battling himself.. everyday he was miserable. There was nothing I could do, or anyone could do.

After about 6 months of going through the over thinking process.. trying to fight the tears, trying to evaluate what was going on I decided to get some help. I just couldn't fight this anymore, or him, or the school notes, emails, I was beyond clear thinking. I was just very lost. I reached out to a friend. An online friend because I believe those are sometimes the best. Those who have went through what you have been through, those who don't judge and would do anything to try to help you. To be there for you. We started brain storming together. I talked. A LOT. She listened, she gave me ideas, and I put it to work.

Next was his appointment with developmental medicine. I laid the cards out. They were all there. I explained to her what was going on and that I was considering medication.. I guess its time for meds. She looked at me and said wait I've been following Tyler since he was diagnosed. This isn't Tyler. Things don't seem right. She gave me a script for blood work and an EEG. I was sure it would all come back normal. I mean I really thought it was something. It was something medical.. but I am always the one over thinking things and I just needed to except Ty was going through some changes.. except he WASN'T!

I was making dinner that night when I saw the number pop up on the screen. It was only a day later.. they said it would take a week.. the test results. She spoke sweet and calmly while inside me the world was spinning. She confirmed that he was having seizures. In this one hour eeg it wasn't just one or two it was several and several more during this one hour. He was battling constant seizures. The seizures you can't see. They were taking place in the front temporal lobe. This is point blank where the behaviors were coming from she said in different words. Those strange shaking of his hands and weird movements I noticed weeks ago were in fact seizures. It took me a while to digest. I couldn't believe that I waisted all my time trying not to see his doctor for fear of medication when the answer actually was medication. Finally an answer. Finally my eyes were open and soon his would be too. Soon he wouldn't be so upset, he wouldn't be so unhappy. Part of me was still in shock and sad that he had a new diagnosis but the other part of me had a huge smile on my face and the beautiful feeling of relief. There is a light at the end of tunnel. He is going to be okay! I'm going to get my little boy back!

So after one failed medication we have found the right one.. all is well in the land of Tyler & he is back. My boy is back! He's not aggressive, hes not hitting, hes not angry. He is just the opposite. He is smiling, he is hugging, there are kisses, he is happy. My boy is happy again!

Please if you see a big change in your child and they don't seem right take that as a hint, a notice, a cue.. they are trying to tell you something! Just because a child cannot speak doesn't not mean they aren't trying to tell you something.. Dig deep. You will get answers.

We won't be coming to your Birthday party.

Every year it seems there is something to be missed. The feelings never change. A bit a disappointment, a bit of anxiety, and a bit of just not knowing how to handle this next decision.

It would seem simple. I hear them... well why don't you just take him and see how he does. Thank god for their logical thought process so now I can put my mind at ease. Of course they don't get it. They obviously don't know or understand the magnitude of a simple decision. When your child has reached his limits of being able to try and see, these things just are no longer simple.

Imagine taking your 4'6 112 lb child into a room that exhibits flashing lights, filled to the brim with people chattering, and so much in general just going on. Me, myself I could barely stand that kind of overload.. So honestly I can't process what or how he must feel. I envision the possible scenerios and none of them go well. At this stage in the game its just not possible.

This isn't about me. I say that because the first thing people think when I decide not to take my child somewhere is that I can't handle him in this situation. First off, its not that I can't handle him. I assure you after 8 years of blood, sweat and tears I can handle anything this boy throws at me. Everyday is a journey where this is most possible. But its not about me, and what I can handle. Its about him and what he can handle. Its about not putting him in a difficult situation and watching it all come down. What is it worth.. Is it worth me saying we did it, we tried it? Is it worth him becoming agitated and hurting himself or ending the night in tears? How is this helpful?

I don't want to hide my child from the world, or the world from my child. That is not my idea. There are plenty of wonderful things we can do together that don't end in tears and lost time. We go to the movies, shopping, to visit friends. We have a lot of fun together. But places that are overwhelming and overstimulating you won't catch us there. It does more damage than good and I don't feel it is necessary to subject him to that kind of torture for my own peace of mind or to make other people happy.

Its about him. He is much more important than any party, or trip I think I am missing out on. Yes, sometimes it sucks that we can't do everything the other kids are doing. It sucks that we miss birthday parties, trips to the zoo, or the beach. But its just not our hand in the cards. Our hand consists of quiet weekends at home, day trips to the movie theater, occasional camping trips, and what Ty likes. Not what the world has defined as normal child activities.

We do what creates his happiness because ultimately that is what is important. 

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!