Friday, March 26, 2010

Black and White

Lately I have been thinking a lot. I know it's dangerous.... but just read on....

Amelia is turning 1 next week, so I'm having that time of reflecting on the past year and remembering when she was just born. How different everything was then. When Amelia was born Charlie was 1 1/2. We knew something wasn't quite right with him, but me just having a newborn I was in denial. I kept telling myself that he was just unique, and every child is different. Shoot, My siblings and I could not be any more different! Charlie was just a different child, and that was okay.

Watching Charlie grow up was quite the experience. After having Amelia and spending this past year watching her grow and develop I have realized how much we missed out on with Charlie. I remember when he turned 1 he got the "Kung Fu Panda" movie from Brian and I for Christmas. He LOVES the movie, and would sit down and watch it from beginning to end. He would not move, at all. We as new parents thought this was normal and didn't think about it. He can still sit through a whole movie today if he likes it.

Now Amelia on the other hand, she has the attention span of a 1 year old. She puts EVERYTHING in her mouth, and LOVES to explore. She is constantly keeping us on our toe's, and she is always getting into something. Charlie never did this. He has always loved his routine, and never explored much. I remember Brian's parents telling us when Charlie first learned how to crawl at the age of 13 months that we were in for it. That he was now on the loose and was going to get into EVERYTHING. He never did. Sure he got into their tuber wear cupboard, but that was about it. Now with Amelia since she is walking she gets into EVERYTHING. And I mean everything. If she can reach it, she's in it. If she can climb up on it, she's already on it. While it's exhausting, it's absolutely wonderful.

Having a baby that isn't on the spectrum is a whole different experience. We sometimes find ourselves looking at each other saying "What do we do with her?" We are not used to so much interaction, that we get lost with her. She's not like in the aspect of is that all Charlie wanted to do was to cuddle up on the couch, or stack things. She mobile baby, and you better believe that she is exploring the world at her finger tips!!

Now that Amelia has found her new independence she is really starting to open Charlie up. He is starting to explore a little more with her, and try new things. It's a little bit at a time, but I see him looking at her and watching her. Kind of like he is studying her moves and actions and taking notes.

Charlie will be 2 1/2 on April 18th. He can only say a handful of words, and communication is still next to nothing. While we are working on it, and it gets better everyday, it is still hard. He is slowly learning how to ask for things with Actions, and is starting to use words. Most of the time it's jibberish, with a few select words you can understand. Great example, I was talking to Brian in the car last night about something Charlie had said early that day when he said " insert jiberish here and here and here GOOD GIRL and more jibberish" . At the moment it was quite amusing, I had been telling Brian that Charlie told Nanny "GOOD GIRL!" While she was chewing on a toy. I had tried explaining to Charlie that Nanny wasn't a "good girl" but indeed a "bad girl" because she was doing something naughty. Of course he had that blank stare that he gets, it's like he's looking through you, not at you. and then he just walked off. So when Charlie chimed in, in the story, it's like he was trying to tell it himself. It was very cute and a moment of clarity. It was wonderful.

Brian and I live for the moments of clarity with Charlie. It makes the bad days worth it. Every time he says a word, it's like hearing him say "dada" for the first time. My heart drops and I can't help but start to cry. It's such a victory moment.

Wednesday, March 24, 2010

Growing Pains

This morning was a little rough for Charlie. He woke up at 4am crying. I was stuck in dream land, so Brian got up and tried to calm him down. Before I woke up, I heard Charlie crying in my sleep but I was dreaming about him. I had this horrible dream that I was stuck in a maze, I could hear Charlie's screaming and crying but no matter which way I went I was at a dead end in the maze. When I finally woke up and realized that Charlie was crying in real life, I shot out of bed and came out into the front room. It was a pitiful sight.

Brian was sitting in the recliner with Charlie and had started the movie Cars. Charlie was sitting on his lap crying. Brian looked at me with a stressed out look and said "I don't know whats wrong." Charlie put his hands towards me (YAY!! Huge step!) and picked him up. We went and sat on the couch. I laid him down, with his legs across mine and started rubbing them. I have no idea how I knew that is what was wrong, but I did. I rubbed his legs, and feet. I did rotations with his feet to loosen up his ankles and he calmed right down. It was just awesome that he knew what he wanted and he was trying to communicate with Brian, but I think Brian was just to tired to try and decode what Charlie was asking.

The rest of the morning has had it's up's and down's. He is defiantly testing the waters as a 2 year old. I LOVE it!!

Also this morning the "First, Then" FINALLY Clicked. Last night before bed he DESTROYED his room. I was too tired to fight with him to clean it up, so I told him last night that in the morning before we played we had to pick up all his toys and put them away. So after his nice warm bath, we went into his room this morning and I said "Charlie, First we pick up the toys, THEN you can play with these Easter eggs". I was expecting a full out tantrum, complete with hitting and kicking. I was so surprised when he just started picking up his toys. I had to remind him a couple times to keep him focused on the task, but he completed it all by himself with no tantrums!!

I was so proud of him in that moment. I kept encouraging him and telling him what a great job he was doing. You could tell he was proud of himself too.

I feel like my dream I had this morning was a reflection on how I feel about Charlie and this journey we are taking. It's a maze that I am going through as a parent to find my child. I can hear him, but can not see him. While I feel like every turn I take is a dead end, and gets us no where, it is leading me a little bit closer to finally seeing Charlie for who he really is. A bright, beautiful, brilliant little boy, who is simply just lost in the maze of autism.

Tuesday, March 23, 2010

The hard part of being a parent

Everyone will agree that it takes a lot of patience and hard work to raise a child. It's even more challenging when your child is a special needs child. Whether they have Down Syndrome, a Birth injury, Speech Delay, or whatever, it is harder.

My current problem with Charlie is that he is 2 1/2. So not only is he trying to figure out our complex language that we call English, but he is also trying to figure out how to deal with things that frustrate him. Lately he has taken to hitting. It is frustrating to everyone involved, but mostly to Charlie. I know that when Charlie hits me while it's not okay, I understand that he is frustrated, and he is trying to tell me something, and my job as his Mother and Teacher, I have to figure it out and arm him with the words/tools to tell me what is wrong. Unfortunately Little Miss Amelia is getting the brunt of Charlie's frustrations. I try to stop the problem before it starts, but there are times where he hits her because she is just simply there.

I understand this is a normal 2 year old behavior. They are trying to figure out the ways of the world, and hitting, kicking, and biting is all part of it. But how do you discipline a child that doesn't understand WHY they can't hit? I have posted on Facebook my dilemma and I have gotten some great answers. Some friend suggested giving him something else to hit. Telling him he can't hit Amelia and redirect him to the pillow or punching bag. Some said to give him time outs, make him say sorry, and hug Amelia. While I agree these are all wonderful ideas, I don't know how well they would work with Charlie.

I know that what I am currently doing is not working. Here is a typical scene. Charlie is "Playing" with his cars and Amelia walks/crawls up to him. Usually before she has a chance to reach he yells "NO!" and then slaps her. While he is doing a great job telling her no, the hitting part is obviously not okay. So usually I remove Amelia, Calm her down, and give her her own car. I then try and tell Charlie that we don't hit. Hitting hurts and it's not okay. When he is a repeat offender I will put him in time out on the third time of hitting. I try to give him room to think about his actions, but it doesn't seem to be working. Yesterday I had a moment of when I just saw red. Same scene, but Charlie hit Amelia with a car. I was so frustrated at that point that I told him we don't hit and then I spanked him. I felt SO horrible. I didn't spank him hard, but he was shocked and ran. I know that it was VERY wrong of me. And I told him I was sorry. It defiantly doesn't take back what I did, nor does it make it okay. But at least I am honest with myself and know what I did was wrong. After all, why would you hit a child and tell them "No hitting!" Totally doesn't make sense!

I know there is something I am missing here. There has to be a way for him to understand we don't hit. He is so incredibility smart that I am amazed with the things he can do. There just has to be a way to get it to him. To relay the message. But how?

Another issue that we are having, that we didn't realize until recently is that we provide Charlie with more one on one then we do Amelia. It really is heart breaking. We have been working with Charlie so hard to get him to talk, communicate, and function, that we have put Amelia on the side. This is also SOOOO not okay. I told myself when I had her, that she wouldn't be forgotten. I would spend equal time with each child. Unfortunately the ugly truth is, is when you have a special needs child, they tend to require more attention. I am thankful that Brian and I are more observant about the whole picture, and when we realized Amelia wasn't where she needed to be, we equally split the attention and started working with her. Now I don't want you to think we neglected Amelia, because that is FAR from the truth. For us it was easier to grab her something, or anticipate what she wanted, instead of waiting for her to ask for it. We weren't allowing her to get upset, or have the opportunity to learn. If anything we were a little over the top.

Stepping back and looking at the situation, Amelia is a product of her environment. We are changing this every day. I do not want Amelia to grow up thinking she is less than Charlie, or she isn't good enough. I have gotten the kids on different nap schedules, so there are at least 2 hours during the day they have alone time with mommy. We play, learn, and have fun. At night they both go to bed around the same time, but Brian is home so they get alone time with either mommy or daddy. We switch every night so they feel like they get equal time.

Being a parent is hard work, especially when you have more than one child, but I must say, that it is COMPLETELY worth it. Nothing is better than snuggling in bed with your children and husband at night watching a movie.

Sunday, March 7, 2010

Flower pedals on the ground

Here in Oregon it seems like spring has come early. Flowers are blooming and the sun is shining. Our neighbors has a Chinese cherry blossom tree, and the flower pedals tend to blow in the wind. Yesterday Charlie and I were outside doing a little bit of yard work and soaking up the sun's rays when he noticed the pedals gently rolling down the street. He stood there going "OoOoOoO!!" and pointing to each pedal. He never did touch them, but would crouch down and would take a closer look at each one. You could tell he was examining each one as it rolled on by. Sometimes he would walk with it, and sometimes he would just sit there an watch it roll on by.

I love how it's the little things that he notices. I have never sat and watched the pedals from tree's roll down the street until I did it with Charlie. It was such a beautiful experience. It's the whole "Stop and smell the roses", I get so carried away with life and making sure that Charlie's day is the same with no changes, that I forget to stop and watch the pedals with him.

I really loved sitting on the side walk with him yesterday. Just Charlie and I watching the beautiful pink and white pedals, and smelling their lovely fragrance. For that moment in time I wasn't worried about a thing. I just let it all go and enjoyed the moment. I didn't think about what would happen if a loud car drove by, or if he would get obsessed. In the moment I forgot his downfalls as a little boy with Autism, and embraced his spirit as a little boy with special talents.

Yesterday taught me a lot about Charlie and who he is. He isn't a little boy with Autism. He isn't lost, or behind. It's the world that is lost and behind. Charlie is too smart for the world. He knows how to stop, and look at the little things, to take in each movement of the pedals and to let the beauty of it all take him in. Charlie is teaching us to slow down and take in each movement of our life, and is teaching us to let life take us in. Enjoy the beauty that is around us, and to "stop and smell the roses"

I can't wait for the summer to begin so Charlie can teach me even more about him.

Tuesday, March 2, 2010

A quote..

This is from "A Thorn In My Pocket" By Mrs. Cutler

In this chapter she is talking about how she is about get on stage and do her first lecture. She is trying to find an opening statement that the mothers in the room would relate too. She sets up different ones, and then she says this

" Maybe I should come right out with it, and talk about the screaming fits, the spitting, the pitying glances of other children's mothers at birthday parties, and the everlasting guilt gnawing away on you. Yes and panic."

"You and your child will roll in the undertow, sand filled breakers slamming you forward, sucking you back, scraping your knees raw, filling your eyes, your nose, your mouth with gritty salt water. Then what?"

"You'll survive, that's what. You'll find your footing and stagger up onto dry land holding on tight to your child. You'll limp but you'll make sense. There'll be good days and nightmare nights, moments of great pride and days when you want to slink out of sight. But it won't be raw knees in the undertow"

Whenever I read these lines my nose starts to sting, and the tears start to fall. This is exactly how I feel. It just brings me back to that wonderful picture I took at the beach and how much it just represents our life.

Monday, March 1, 2010


Ugh. So Charlie is sick. It started yesterday afternoonish, around 4. He woke up from his nap with a runny nose, and has been miserable since.

This morning he was up at 5 am. It was constant screaming, yelling, kicking, hitting, and tears. It was a constant battle with Charlie today. More so then usual.

It is now 1:02 am on Monday morning, and I am awake. Charlie keeps stirring and has had a rough night so far. He wakes up about every 30-45 minutes just screaming. I do not know if he is in pain, or if he just is having problems breathing.

It's gonna be a rough day tomorrow..