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.

Beach Woes

We're leaving for the beach in a few days and I'm starting to reminisce the previous summers leading up to this one. The summer's that Jacob was scared of the beach and everything pertaining to it. We missed out on a lot of beach fun because of his anxiety about the sand and the water. Last spring I was introduced to the movie "Temple Grandin" and it changed my outlook on Jacob's anxiety. Temple was a girl with autism and her story is remarkable, but what I learned so much from her story wasn't about her, it was about her mom and her mom's perseverance to make sure Temple was able to experience the things that every child experiences and loves. She talked about how her mom encouraged (aka forced) her to do things that she was fearful of. Temple eventually was so grateful to her mom for forcing her to do things she wasn't comfortable with. Now she has taught herself to try things even if they scare her because she might end up liking them or at least be able to tolerate them. So last spring, against everything that I had been doing with Jacob, I decided to force him onto the beach. I remember my dad carrying him across the sand, Jacob kicking and screaming the whole way, me and my mom crying and Caleb just watching as if we were strangling his brother. I debated the whole way whether or not we were doing the right thing because it felt like we were just torturing my 4 year old innocent son for no reason. It was so difficult to see him be so fearful of something that most kids love. We spent about 30 minutes out in the sand trying to get Jacob comfortable by building sandcastles like "Max and Ruby" (Jacob's favorite cartoon). He eventually quit screaming long enough to look at the sandcastle and smile for a moment. The next morning we woke up and Jacob said "I go make sandcastle's like Max Ruby." I was amazed!! So off we went back to the beach and although we had to carry him across the sand and place him on a towel so the sand wouldn't touch him, he had fun. We went home from that trip in hopes that Jacob would do even better the next time and a week later he was begging to go back!! So, my parents and I made an impromptu decision to take the boys back to the beach and we left 3 hours later. Jacob, without hesitation ran onto the beach like he'd never had a fear about it before. I couldn't believe my eyes and honestly could barely watch him enjoy it from the tears welling up inside. This year as we prepare for the beach I've had to make a calendar so he can visually count down the days till we go so he'll quit asking me when we're leaving. I never dreamed he would be begging me to take him to the beach!! So, from now on I've promised myself that I will make him endure things at least once so that maybe, just maybe, he'll learn to overcome his fears and learn to love it!!

A Free Day

I just woke up at 7 a.m.!! This never happens in our household because Jacob's normally awake and in our bed repetitively asking for things by 5:15. Thank God for grandparents that offer to let him spend the night when I need a break! I get overjoyed when I wake up at 7 a.m. and I realize that I have a day free of the autism struggles. It's not that I want a day free from Jacob though, just autism. It's a day for me to rest, recoup, refocus, and FINALLY clean my house!!! I feel like having a free day from Jacob allows me to get my life back in order so I can be a better mom to him.  There's days that I wake up and imagine to myself what Jacob would be like without autism. He's such a sweet and funny little boy but what would he be like without autism. For one day I'd like to witness him having fun with no hindrances or hesitations, eat whatever he wants and not have sensory or diet issues.  I wonder how different he would be. Nevertheless, he is who he is and I love him for that. He's taught me more about life than anyone could and more than he'll ever know!

My Disclaimer

So, I'm writing this as a disclaimer. On this site I'm going to be very open and honest. Half the stuff I might say on here may sound harsh and unfair or downright mean but this is a website for me. It's a place I can come and rant without judgement so that other special needs parents may be encouraged. It doesn't mean I don't love my child dearly and it doesn't mean that I won't care for him and give him everything that's best for him. But life with a special needs child is anything but pretty and if I'm purely honest it's just plain hard! I've written the words to a song below that reminds me of my life with my sweet, loving, hard headed, annoying, loud, disruptive son. Love you Jacob!!

Life ain't always beautiful
Sometimes it's just plain hard
Life can knock you down, it can break your heart

Life ain't always beautiful
You think you're on your way
And it's just a dead end road at the end of the day

But the struggles makes you stronger
And the changes make you wise
And happiness has its own way of takin' it sweet time

No,life aint always beautiful
Tears will fall sometimes
Life aint always beautiful
But it's a beautiful ride