Myrtle Beach

Erick and I are preparing to leave to go on a couples get away and it seems that the closer we get to leaving the more excited I am, but I'm also starting to panic a little. I've never been away from either of my children for this long and although I need a break, I have a feeling that I'm going to miss them terribly. How is it that the one thing we feel the need to get away from is the exact thing that makes us want to come home? It's the strangest feeling I've ever known. Some days I wish that life was like the story of Benjamin Button. I wish we'd start off old and wise so we would know how to appreciate things when we grow younger. It seems the older I get the more I miss certain aspects of my younger days. I know that one day I will miss my children being young, cute and not so innocent!! Right now it seems like the days are long and full of whining and fussing. People tell me that one day I will wish I could come back to this time and maybe I will, but right now I'm not sure why. I guess it's like childbirth. The older your kids get the harder it is to remember the pain of childbirth. So, the older your kids get the harder it is to remember how time consuming they are and the fact that when they whine all day all you want to do is lock yourself in a closet and let them fin for themselves. So, why in the world do I feel panicky? Like they say, the bond between a mother and child is not explainable. I can't wait to get away from them tomorrow but I'm already counting down the days till I can see them again...I love them, what can I say? 

Backpacks and Robots

A few days ago Jacob and I sat down at the computer and I let him pick out his backpack and lunchbox pattern. He quickly chose the robots and thought that he could have these things immediately. I tried to explain to him that they'd be here in a few days but I'm not sure that he understood cause he just kept asking for them. A day or two passed and he seemed to have forgotten about them. I was hoping he'd still be excited when they came in the mail. He was napping yesterday when his lunchbox was delivered so I unwrapped it and set it on the counter all nice and neat so he'd see it when he woke up. After his nap he came downstairs and I quietly called his name while pointing to the lunchbox. As soon as he saw it his face lit with excitement and he jumped up and ran to grab it. He said "THANKS!!! I like it!!!!! My eyes welled up with tears. He probably sat for 30 minutes just checking it out and playing with it. I wish I knew what he thought about seeing it on the computer screen and then it showing up at the house a few days later. Hopefully one day he can explain, but for now, I think his smile says it all!! 

The Change

If you had told me 6 years ago that I would one day have the desire to work with special needs kids, I probably would've laughed in your face. It's not because I disliked them, it's more of I didn't know how to act around them, what to say and how to be. The past 6 years of my life has changed me. When I see a special needs child now, all I want to do is go talk to them and hopefully, somehow, make their life a little better. I guess that's what being a special needs mom does to you. It seems to give you compassion for people that are different.
      I was knocked off my feet when I found out Jacob had autism. I felt like all I had ever hoped for was being torn out of my arms slowly by some dreadful monster. All I could do was sit and watch as my sweet son struggled with life. I went through bouts of hating God, hating people who had typical kids and blaming myself for my son's struggles. It wasn't a very pretty time for me and there are still some days that I deal with these emotions. I call it my "grieving" day. I don't think the grieving process ever goes away, you just learn to deal with it and move on.
      Jacob's taught me more about life and love than anyone else could. I guess the main thing he's taught me is to look at the simple things in life. He doesn't worry what others think of him, he just is who he is and that makes me so happy. It reminds me of the "Friends" episode where Phoebe is running through the park with Rachel. Phoebe looks ridiculous in the way she runs with her arms flapping all over the place and Rachel's embarrassed to be seen with her. At the end of the episode Rachel realizes that it's more fun to run freely like Phoebe does and not get so worried about what others think and so they sprint off together looking ridiculous, disregarding all the crazy stares. I feel like I'm watching me and Jacob when I watch that episode, probably because Jacob actually runs like that, but mainly because he seems so free to be himself. I wish I didn't have the "what does everyone think of me" mentality. I wish I felt free to be me.
      He's also taught me that just because life doesn't turn out like your picture perfect dream when you were little, doesn't mean that it's not wonderful. My life is absolutely nothing like I thought it would be, or should be, but it's still great. Is it hard? Heck yeah, But I'd rather have Jacob with autism than not have him at all.
      He's also given me the opportunity to know and understand completely what unconditional love is all about. As a little girl you think unconditional love is beautiful and lovely. I've come to realize that it's not like that at all! Unconditional love is hard, frustrating and makes you more mad than you ever thought you could be. I've never known anyone else who can make my blood boil and make life sugary sweet all in a matter of seconds.
      I know that Jacob will continue to teach me things about myself and the life that God has given me. I'm learning to roll with the punches and live life to the fullest with one of the most precious kids I've ever met!
     

My Wish

Around the time that Jacob was born the song "My Wish" was released. I loved the song and naturally I thought of Jacob every time I heard it. Those words have become common thoughts and worries for Jacob. So, I've deemed it my song for him. I want so much for him! I don't ever want him to be discouraged because he's "different." I pray God gives him strength to endure laughter, stares, awkward moments and silence. I wish I could keep him in a bubble forever so he'd never experience the pain that others can bring him. However, I can't do that so I pray for strength and endurance for him! Love my sweet Jacob!!


I hope the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you,
And if one door opens to another door closed,
I hope you keep on walkin' till you find the window,
And if it's cold outside, show the world the warmth of your smile,

But more than anything, more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

I hope you never look back, but ya never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get
Oh, you find God's grace in every mistake
And always give more than you take.

But more than anything, more than anything,
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, your worries stay small,
You never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
Yeah, this, is my wish.

The Little Things

We've just been back from the beach a few days and Jacob's already asked to go back. I am still amazed that just last year we had to force him onto the sand and watch as he struggled to feel comfortable. Having a child with special needs makes you appreciate the little things in life. With Caleb being a typically developing kid I'm aware of this even more. Caleb's accomplished tasks make me happy but Jacob's accomplished tasks move me, excite me and bring a tear to my eye. In some ways I feel like I've been blessed to be able to feel that proud of my kid!! I know that all parents are proud of their kids but having a special needs child and a typical child I can say with complete confidence that the proud feeling that I have for Jacob is stronger than that for Caleb. I guess it's because Caleb's accomplishments are just natural at this point and Jacob's had to work hard on overcoming his inhibitions. I know this may sound cold towards Caleb but I know that in a few years this will probably all change and I will be overly exuberant about Caleb's undertakings. For now I remain overly excited about the accomplishments of Jacob and that feeling will probably never change!

Where am I?

Most of the time I feel so cut off from the world. People are talking and having conversations about what's going on around them in the world and I have nothing to add to the conversation. Sometimes all my mind thinks about is autism. What causes it, how to cure it, what would help Jacob improve, how can I get Jacob to eat new things and how can I help him overcome his fears. It makes me feel very isolated from normal conversations. Having a child with autism already ostracizes me enough, why does my own brain have to do it too!  Every time I open my mouth I feel this voice in my head saying "quit talking about autism, everyone's tired of it." Even though I hear this voice it seems I can't stop! My mind is saturated in it. When I'm not thinking about autism it seems like I'm only thinking about household chores and what to cook for supper. I'm assuming that one day I'll feel like me again and that I will join society again and feel normal. I keep telling myself that autism is not my life but the more and more I live, the more I realize that it is. I've come to terms with it, now I just need to learn how to live without it consuming every thought and moment of each day. I hope one day I can join in in regular conversations like a normal human being.

Welcome To Holland

Someone posted this on the local Autism Support Group Facebook page and I thought it was such a great way to describe what being a special needs parent really feels like. Sometimes it is harder than this story portrays but nonetheless it's a good story. So...enjoy!!


WELCOME TO HOLLAND
by Emily Pearl 

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel - It's like this .....
When you are going to have a baby it's like planning a fabulous vacation trip - to Italy say. You buy a bunch of guide books and make wonderful plans. The coliseums, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says "welcome to Holland". "Holland!!!","what do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy! all my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible disgusting place full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books and you will learn a whole new language, and meet a whole new group of lovely people you would never have met otherwise.

It's just a different place. It's slower than Italy, less flashy than Italy but after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has Tulips, Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy and they're all bragging about what a wonderful time they had there. The rest of your life you will say "Yes, that's where I was supposed to go. That's what I had planned".

The pain of that will never go away, because the loss of that dream is a significant loss. But if you spend your whole life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.