Jacob's Social Story

 For those of you wondering exactly what a social story is and for those of you that want to write a social story for your child, but not sure where to get started; I've listed below the pages of Jacob's newest airplane social story for you!! Remember that the pictures need to be as specific as you can get them and you need to include as much detail as possible, especially on the things that might be an issue with your child. This one is kind of long, but it required pretty specific details about every step you take at an airport. I also decided to get this one laminated and bound so that it would last through the next 4 weeks and the trip itself. Keep in mind too, that even though you need to be very specific, it needs to be put into words that your child will understand.  So in this story you might think I worded stuff weird or different but it's because I know what Jacob will understand and what he won't. If you have questions or advice let me know!!

This last page is obviously Jacob's check list and with everything he checks off he will get a reward. I started with things that don't make him anxious, mainly because I want him to realize that he gets a reward for checking stuff off before we actually get to the harder tasks like "waiting in line at security" or "going through security." My hope is that he will be used to getting rewards and will push through the hard things to get his reward.

I'm Leaving On A Jet Plane

    The title of this post alone scares the crap out of me. Although I'm excited to have the opportunity to go see my sister and the new little bundle of joy, (which is finally a girl, I might add) I'm terrified of what that means for Jacob. I contemplated leaving him at home and only taking Caleb. Although, for the last year Jacob's been begging me to go see his cousins, Gabe and Zane. He would never forgive me if I left him at home but took Caleb. Just the thought of leaving him behind is simply not an option anymore.

     I've been trying to cross every "t" and dot every "i" to make sure that I prepare him for the trip. Does this mean that the trip will be a success? Yes, if success means we will fly there and fly back. No, if success means that we'll travel without meltdowns, hindrances and lots of tears. However, there are lots of things that I can do to help with his anxiety and frustrations with the process of flying.

     The first thing that I did was I bought a shirt for him that says "Sweet, Funny, Smart, Autistic." Then, I bought one for me that says "Keep Calm I'm an Autism Mom." Did I buy the shirt so that people would feel sorry for us, NO!! I bought the shirts because of all the sweet onlookers, with their precious judgement's, that watch when Jacob melts down. I wanted to buy a shirt that said "Autism: smiles are welcome, parenting advice is not." I decided though that I wanted to ease people's minds, not immediately offend them. Let's just face it, it's embarrassing when your typical child acts out in public and people stare. Try taking your special needs kid out in public, who by the way, can have overwhelming outbursts at things that you would never think of, in moments that you would never see coming. These kids aren't trying to act bad, they simply do not know how to process their fear, anxiety, apprehensiveness or frustration. Then add on top of that, that they refuse to be hugged or comforted...sounds fun, huh? Then I get to deal with all the stares and judgement's from people who are most likely nice people, but to me they are enemies, satanist, anti-Christs...OK maybe I went a little too far with that one, but, you get the point!!

    The next thing that I decided to do was write him, what is called, a Social Story. This is a home made story that I typed out on the computer and added real pictures to. The story starts off telling about how we have to drive to the airport, talks in detail about security, lines, sounds & airport procedures. All these things have pictures to go with them so that he will no exactly what to expect. Letting him know in advance what will happen, helps with his anxiety because he can remind himself of the book and remember that, for instance, "Metal detectors keep us safe, they are not scary." The last picture in the book is a picture of his cousins. That way if he get's overwhelmed we can look at their picture and remember why we are doing what we're doing.

    The next thing that I'm going to do is make him a check list of all the things we have to accomplish that day. Every time he gets to check something off his list, he will get a reward. Most likely the rewards will be white chocolate covered pretzels...YUM!!! I might make me a checklist so I can eat them too! This will help him visually see how many steps we have completed and how many more we have to go. Plus, it will keep him thinking about his reward when we come to something that may cause fear for him.

    Before we leave, I'm going to let him watch some video's on YouTube about airplanes and we'll find some flight noise simulator's to help him listen to what type of sounds the plane makes. That way he will be familiar with them and hopefully won't be fearful of them in real life.

    The last and most important thing that I've done is make sure that we have lots of electronics on the plane. He will be able to swap out between the tablet, DVD player and old cell phones. Now I just have to pray that the electronics don't die before we land.

    Lots of patience, prayers and perseverance is what's going to get us through this trip. When I began to tell my mom all the things that I had planned for preparing Jacob, she said "You sure are smart!" I couldn't help but bust out laughing because that's the last thing that I thought of myself. My response was "I'm not smart, I'm fearful." I've decided to go through life experiencing everything that we can experience, even if that means it being hard and un-fun at moments. The more that Jacob experiences the better off he is and that makes me one happy Mama!!

Ten Things I Love to Love about Jacob

I've been thinking a lot lately about all my posts and although I created this blog to share the reality of autism and the struggles it entails, I feel like I should give you guys a different side of the autism story. The parts of Jacob's story that make me proud, happy, smile and most of all blessed. So here are ten things that I love about Jacob:

10. I love the fact that when I'm cracking and peeling my boiled eggs in the morning he comes and tells me that the eggs are hatching.

9. I love how excited he gets when he finally accomplishes something he's tried and tried to do. Especially when he asks for my help and I encourage him to do it on his own. When he finally get's it, he's beyond excited for himself. He also loves to tell everyone about it.

8. I love how Jacob can spot something that he loves from a mile away and I still never see it. For example, in the car he'll say "I see a blue zebra!!" Now, I know that you're thinking that there aren't blue zebra's around, but let me tell you friend, if Jacob says he see's a blue zebra, by god there is a blue zebra somewhere! You may never find it or see it, but HE does and that's all that matters.

7. I love Jacob's sense of humor. Humor is not a strong suit for kids with autism. They usually don't make jokes and they certainly do not understand jokes...not so for Jacob!! He loves to make you laugh and he loves it when you joke around with him. In fact, joking around is one way to get him to obey and mind. Even when Jacob was younger he loved to answer questions wrong on purpose. For instance, we could say "what color is your hair?" and he would say "purple!" He would then bust out laughing and say "that's not right." My favorite joke that he's ever told was "knock knock, who's there? Cockadoodledoo! Cockadoodledoo who? I'm a CHICKEN!!!!" Lots of laughter followed this one!

6. I love watching Jacob learn. It's very fulfilling!

5. I love how honest he is. I remember when his aggression was a lot worse than it is now and Erick would be scolding him for hitting Caleb. Erick would discipline him and then ask him "Are you going to hit Caleb again?" The answer was always "yes." I mean, obviously we wanted the answer to be "no," but Jacob was just answering the question honestly!

4. I love watching him run. It is so ungraceful!! It reminds me of Phoebe on Friends. She didn't care what other's thought she just loved running crazy cause it made her feel good. Watching Jacob run all crazy makes me feel good.

3. I love that Jacob lives for the small things. He doesn't ask for all the latest gadgets and toys. He's completely content with the small things.

2. I love watching Jacob overcome obstacles and hindrances. It's more of a blessing than anything else I know.

1. The thing I love the most about Jacob is the fact that having him strengthens my faith. Not because anything that I've done but it's Christ lifting me up and reminding me that HE is Lord over all, even the parts that are hard and messy. I'm reminded daily that this fight is not my own. I am nothing without Christ. I am a horrible mother, a horrible wife, a horrible friend. I'm selfish, I'm lonely, I'm rude, I'm self seeking, I'm arrogant, I'm impatient. I'm weak. If you see anything else from me, then it's because of Christ.

2 Corinthians 12:9-11

But he said to me, "My grace is sufficient for you, 

for my power is made perfect in weakness." 

Therefore I will boast all the more gladly about my weaknesses 

so that Christ's power may rest on me. 
That is why, for Christ's sake, I delight in weaknesses, 

in insults, in hardships, in persecutions, in difficulties. 

For when I am weak, then I am strong.

I relate so much to the following song. It's a fun uplifting song but the chorus is oh so true!!

Where would I be without you?

I'd be packing my bags when I need to stay

I'd be chasing every breeze that blows my way

I'd be building my kingdom just to watch it fade away

It's true

That's me without you.

Check it out and enjoy!!!

That's Me Without You!!

A Little Blessing Named Sarah

    I've never been to the beach so many times in one summer than this summer. The boys and I were there a total of four times over spring and summer. One time it was with their daddy and the other times my, very incredible, parents accompanied us. My main reason for planning these trips was to fill up the long endless summer with fun stuff to do so that Jacob didn't get cabin fever and go all crazy on me. We had some crazy moments throughout the summer but it seemed these trips came at the most perfect times. Another reason I am drawn to the beach is because it's one of the few places I feel like we can go and blend in with everyone else. Jacob, to everyone else looks like a typical 6 year old boy playing on the beach with his family. They don't know he has differences about him and I feel free.

    One late morning while standing on the beach watching Jacob play, he was so full of excitement and holding back nothing, I quietly told my dad "I love being here, because I feel like this is one of the few places that I feel normal." He smiled and agreed and we basked in the moment of "normalness" for a moment or two. Not long after our conversation I looked over to the right of me and noticed a mom and her three daughters, and what looked to be their grandma. I watched as the girls played in the water, jumping over the waves and splashing around. Then I noticed that the mom wouldn't let go of the oldest daughter. She seemed to be steadying her while the waves were coming in and every time a big wave would come she would hold on to her with a death grip as the other smaller girls were playing freely.
    This little girl captured my attention with her cute little green bathing suit and her pink sunglasses with the elastic strip attached to them so they wouldn't fall off. She was smiling bigger than any of the kids out there.  I immediately knew that this little girl had a special story just like Jacob has a special story. I wasn't sure of her disability but it was very evident that there was a special need of some sort. I tried to refrain from staring but I'm so drawn to these kids now, that it's hard to get my attention off of them. I thought about striking up a conversation but then I decided to let them be, and let them feel as normal as possible too.
    About that time the little girl in the green bathing suit came over and gave me a huge hug and her mom quickly followed her. The mom leaned over and tried to get the little girl to say hello and I could tell it was a struggle for her. I asked the little girl her name and it was hard for her to tell me that her name was Sarah. I asked the mom about Sarah and she informed me that Sarah had autism. Of coarse we quickly struck up a conversation about autism and all the things that autism moms talk about...I'll spare you the long drawn out details. I found out that they lived only about 45 minutes from us and that they have considered moving to Auburn. We talked for a long while until all the kids were getting hungry for lunch and we parted ways.

    After leaving the beach that day I thought back to the conversation I had with my dad. It reminded me that although we have many struggles, there are families out there that have more. This little girl was almost 8 years old and could barely say her name. We are blessed that Jacob not only can say his name but he knows how to spell it and he can carry on a fairly normal conversation. He can tell me when he's hurt and he can tell me that he loves me (over and over and over again). It was a subtle reminder of how blessed beyond measure we are with this little boy named Jacob.

 

My Therapy Session

   The days seem to be getting longer and longer. Even the 2 weeks until school starts seems to be an eternity. I know that Jacob has been in pain from his ear infection and that's why he's been aggressive, loud and whiny. Knowing all of that still doesn't help the frustrations that I feel about his behavior. It also doesn't help the shrieking cries that come from Caleb getting beat up on. The constant abstract and very loud noises that have been coming from Jacob's tiny body are wearing on my nerves. The constant hitting on, not only Caleb, but me as well have made me angry and downright exhausted. I feel like the last positive bone in me is being invaded by overwhelming feelings of inadequacy.

   Lately it seems like I'm doing everything backwards with all my relationships. I keep speaking when I need to be quiet, I'm quiet when I need to speak. I'm disciplining when I need to be gentle and gentle when I need to discipline. I'm mad at jokes and laugh at serious issues. The big one is the fact that I'm angry when I need to teach. Maybe it's because there is so much chaos around me I don't even have time to think rationally about anything. I believe a lot of Jacob's frustrations stem from me feeling inadequate and wanting to quit. Life would be easier if I just quit trying to move forward. Can I just stay right in this moment? I don't wanna stay in this moment because it's so great, I just want to stay in this moment because sometimes it hurts to move forwards. It hurts to make progress because when you make progress, you start to evaluate where you are and you realize how far you still have to go. Sometimes I don't think I have the energy to move forward. Sometimes when you are so excited about the fact that you are moving forwards, something or someone will stop you in your tracks and make you aware that you still have such a long road ahead.

   After a 2 weeks of Jacob regressing a little because of the ear infection, it's hard to keep your chin up. It especially doesn't help when you are in the waiting room and someone moves away from you and says "Let's move, he's making my ears hurt." or a little girl tells him that "you don't understand because your brain doesn't work right." While both of these statements were probably true, it doesn't negate the fact that it hurts and just reminds me of how much different we are from everyone else. The couple in the waiting room were probably really nice and didn't mean any harm from their words but in my weak mental state I could guarantee they were just trying to prove a point and that they were thinking evil thoughts. I probably should get on some type of medicine that would magically make me think people were staring because Jacob is so cute and not that they were thinking horrible thoughts of me as a mother. I really have no idea what the people in the waiting room were thinking of Jacob hitting his head against me and acting like he was raised at the zoo. However, if they could have seen him before we got out of the car they would have gotten a totally different picture of us. He was giving me kisses over and over again and telling me how much he loved me. As for the comment that the little girl made, she wasn't trying to be ugly at all and I explained to her that we say that Jacob's mind works differently not that it doesn't work right. It still reminded me that he's different.

   I took the boys to Birmingham to visit the McWane Center with Erick's older sister yesterday. We had a blast and even though we had a lot of issues with Jacob it was one of the best trips I've been on with him. Yes, he still runs and does his own thing and I end up looking for him at least half the time we're there. He got on an elevator all by himself, it closed and we had no idea which floor he would end up on. It was interesting to say the least. Yes, he played and looked at everything differently than the other kids and the things that interested him weren't always the actual exhibits but things like the garage door that was closing the hallways to exhibits that weren't currently open. No, he didn't always understand that he had to take turns and that there were other kids that wanted to look at things that he was looking at. All in all the trip was a success and I really appreciate my sweet sister in law putting up with all our bumps and bruises of the day.

Life with autism is painful, hurtful, emotionally draining, physically draining and just plain hard sometimes. Most day's I'm tough, resilient and can take the blows. Then, there are the days that you just wanna lay down and die from the pain of moving forward.