Tired

I'm tired today. I've hit a wall in dealing with Autism. More to the point, today I don't want to deal with it at all. I don't want to have to transport Seth to 4 therapies a week. I don't want to have to explain his behavior when we are in public and he melts down. I don't want to continue with potty training when it seems like a hopeless cause. I don't want to be the advocate, the educator and all that goes along with being a parent of a child with special needs. I want a normal life. Whatever normal is.

I have never thought of Seth having Autism as a disability. He can walk, run, and feed himself, and he can learn, he just does those things a different way. So for me Autism is not a disability, but just a different way my child has developed. But in reality it is a disability. It's hard to deal with and frustrating. We have days when we see progress in every area, and then the next day....Nothing. We don't even go back to square one...we go back to minus square 10. And we start all over again. We do the same things we've done and repeat and repeat and repeat. Would I change Seth if I could? I don't know. For the moments in time when he wants to cuddle and when he gives kisses and when he says things out of the blue, we know they are real and heart felt.

So for tonight, I go to bed and get some rest and in the morning I wake up and start over. I become the Mom of a child with Autism. I become the advocate, the educator, the transporter to 4 different therapies a week, and we continue potty training, knowing that one day all the pieces of the puzzle will fall together and it will be worth it all!

Surgery Day

Well Emma Claire had surgery this morning. She had her tonsils out and tubes placed in her ears. She is in her room now and doing fine, but I was sure worried. Having been in the medical field as an MA for 20 years I was well aware of the potential for problems with anesthesia or bleeding or any of the other risks. I am so thankful that Emma Claire had none of those problems and everything went well. We are in her room now and she is in the hospital overnight, but she is awake and talking a little bit and watching TV. She has even had her first cup of Sprite! Thank you Lord for watching over my little girl and keeping her safe and having your hand on her through the surgery. I'm ready for a quick recovery!

The Rules

I like rules. I like order. I like knowing that if A happens then B will happen. The only problem with liking rules is the rest of the world doesn’t always agree with me. In my house rules are difficult. I have a child with Autism that does not have the listening ability for verbal communication. He does well with pictures and sometimes will do as he is told, but other times he is totally oblivious to what is happening around him. I have a daughter who believes “I am 3 and it’s all about me!” and tries to live that motto daily. Then I have a 2 year old that just kind of follows the group. He is cute and handsome and he has been known to use that to his advantage. I mean really could you be firm when those beautiful brown eyes and long black eye lashes are looking at you? Then I have a husband that is loud. He’s a yeller. It worked for his mother therefore he thinks it should work for him. But it doesn’t always work that way. And lastly there is me. I like order. If I say do this it should be done. If that task is not done then there is a consequence. And when order slips out of my hands Chaos ensues! It’s not a pretty picture really, and I hate it!



In our house we have a few basic rules.
1. Obey the first time.
2. Do not hit each other.
3. Do not back chat.
4. Be respectful.
5. Pick up toys and books.
Basically that’s it. While our rules are simple it still seems my kids have a hard time grasping them. I know they are toddlers but at some point they have to learn right?

So as I was taking my lunch break today here is what I have concluded. I’ve been reading all the wrong books on how to get my children to mind. I’ve been reading about how to “Have a New Child by Friday”, I usually start reading on Thursday and pray for a miracle. I’ve read “How to make Children Mind without Losing Yours”, good book, but I still think I’m close to the mind losing. I’ve read books by James Dobson, I’ve read book about Autism and behavior. I am all read out! But my conclusion today was this…it’s time to get back to “THE BOOK”. The only book that really gives me the wisdom I need to raise a child in this world today. I’m going back to the Bible. I don’t know why I have thought of that as a “last resort” when it should have been the first book I went to. Those other books are good. They are informative and I have learned from them, but when I want real wisdom, Godly understanding…I should have gone first to the Bible.

So for our house rules they are being revised.
1. Obey the first time. Ephesians 6:1-2 “Children obey your parents in the Lord, for this is right. Honor your father and mother which is the first commandment with a promise.”
2. Be Respectful. Leviticus 19:3 “Each of you must respect his mother and father, and you must observe my Sabbaths. I am the LORD your God.
3. Pick up toys and books.

For now we start with that. I think all rules could be covered by those verses, and the kids are little after all so we start small. I deleted a couple, because I believe if you learn to be respectful you will learn not to hit or back chat. As they get older the number of rules will increase, but for now we are back to basics!

Running in the fast lane may get your run over

I run in the fast lane of life. I'm not a party girl, I'm a mother of three small children, one of whom has special needs. Here's my week, Monday: work, therapy for Seth, dinner, baths and bed for the kids. Tuesday: work, dinner and bed for the kids, begin weekly laundry. Wednesday: work, dinner, laundry, cleaning and bed for the kids. Thursday: work, therapy for Seth, dinner baths and bed for the kids. Friday: work, therapy for Seth dinner and bath for the kids and then bed. I'm exhausted just typing it. The weekends are chaos and then Monday comes and we do it all over again. In April we add another therapy for Seth when he begins horseback riding therapy again. Yes I live in the fast lane. Would I trade it? No way no how! I love my life. I may be exhausted tonight but my life is amazing. There are weeks when my best friend pops over and helps clean(she loves to clean) and do laundry and for those hours I am grateful. But today I just feel totally overwhelmed. Seth has been having a rough couple of days. He has gone for so long without a meltdown that these last few have been especially rough. I'll be flat out honest...Autism stinks! It's sad to see him so overwhelmed that he can't function and NOTHING I do soothes him. Nothing anyone does can soothe him, we just have to wait it out. It's hard, but once it passes he will cuddle with us and try to relax his body to calm down. I hate it! I wish he didn't have to deal with this ugly thing called Autism. I wish his brain worked just like the rest of us. I wish he had it in him to be social, to speak when spoken to, to answer questions, to be a "regular" child. I wish I could take it away. But I can't. While we have times where we see his progress, there are still far too many times when he is unreachable. I'm his Mother, I should be able to make it better. That is what Moms do, but Autism doesn't let Moms do that. Autism stinks!

Having said all that I will say this. I love my sweet little boy more than anything in the world. And while there are times that he is unreachable I know he is in there and I know that one day he will be reachable. God is faithful. God doesn't allow us more than we can bear. God is my strength in all things....and finally God is bigger than Autism!

Yes I run in the fast lane, and today I feel like I've been hit by a train,(that's a story for another blog) but I know that God is with me and He gives me strength to make it in the fast lane!

The Good Ship Lollipop...Dec 27, 2009

Well as days go today wasn't a bad day. I had time to go to the Children's Museum and see the Barbie exhibit. I will go back and get some photos! It was too cool! Next to Miss America, Barbie is my favorite!

After my trip downtown I had to take Seth to therapy. Everything went well until we were ready to leave. His speech therapist came to get me and Seth wanted to go potty. Off we went to watch Seth sit on the potty. At this point this is all he does. Then getting ready to leave he threw himself on the floor and refused to get up. He wanted a lollipop. I told him and his speech therapist told him if he got up and acted like a big boy he could have a lollipop. Did he do this? Of course not, that would have been too easy. We made it to the lobby and the major tantrum began. This was not Autism related but he sure wanted me to think it was. He threw himself on the floor again and screamed for a lollipop. I had already told him that he was not getting a lollipop because he did not make a good choice. Finally, I had to hoist him on my shoulder and carry him out...litterally kicking and screaming. After being buckled into the car seat he began to scream, very loudly "I WANT A LOLLIPOP!" Calmly I told him, No. He only screamed louder. For the next 20 minutes he screamed for a lollipop. He ran down all the colors and he wanted and finally, tears running down his face he said " I want a dark green lollipop for heaven's sake." Now tell me, how do you NOT laugh at that. It seems so odd to me that this child has struggled so much with language and he comes up with this. He knows how to use phrases in context and usually at a moment when we least expect it.

One day he's telling a joke, the next he wants a dark green lollipop, for heaven's sake!

When a Joke makes you cry...Dec 2009

Our conversation goes pretty much like this...

Seth: Knock Knock

Mommy: who's there?

Seth: Sethie

Mommy: Sethie who?

Seth: Sethie me Mommy!

Now to many that would be a silly knock knock joke. To me it a moment in time to be cherished. A moment in time that made me almost cry. Now I know it was just a knock knock joke, but for Seth it was a venture into my world, not the world of Autism that normally contains him. He took a step across that line and told a joke!

Just when I think I'm getting a handle on Autism, just when I think I understand more....Seth tells a joke!

O what a happy day!

October 17, 2009

The first words to the song "My Savior and My God", an amazing song that tells how much we don't understand the grace and the love of our Savior. Tonight I can't stop thinking about that first line..."I am not skilled to understand, what God has willed what God has plannned....I find myself wondering more and more what His plan is for me. I look at my family and know that He planned for this to be an adventure, I mean come on, a husband and three children, to me that is nothing but adventure! I know that is His plan. My thoughts tonight go deeper. I don't understand His plan in allowing me a child with Autism. A child that is sweet and kind and good. A child that loves his family and loves to play. A child that is smarter than I can even being to understand and a child that can't express most of this to the world. He is my heart. He is my world and I adore him, but I am not skilled to understand. I think over and over again that God must have confidence in us to raise this child, but sometimes it's hard to remember, especially on days when nothing goes smoothly. My other two children are also my heart and my world...they can just express themselves more easily, and express themselves they do!

And tonight while I am feeling overwhelmed by the life God has planned for me I am grateful that He understands and He has a plan!

Sept 2009

What a great day we had today! It was the 9th Annual Autism Awareness walk here in Indianapolis. It was good to be with a huge group of people who live our life daily. It was good to be with a huge group of people who didn't need explanations of behaviors, that understood flapping arms and covered ears and never looked twice at a child throwing a fit that the parents can't control. It was good to be with others just like us!

My emotions are running high tonight. I think it's been an emotional day. I was so proud of my son. To see him walk the mile with Daddy and take steps that mean something to the cause of Autism Awareness. I know he doesn't understand what today was about but it made me proud nonetheless to see cross the finish line!



I'm a blessed woman tonight! God is always good to me, but today He gave me a glimpse of the bigger picture. I have always known we are not walking this journey alone...but today I saw it first hand! To all who love someone with Autism this day was for you!