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Speechless

I know I have spoken many times in the past about Michael’s amazing bond with Jordan. I have always noticed how she takes care of him, like a second mother. But sometimes, she leaves me speechless. Last night was one of those times.

Keep in mind their ages. Michael is 9. Jordan is 8.

So, the last few days have been pretty stress filled around here. Everyone has been gearing up for the new school year. Everything is all new for all three of them.

Last night it came to a head. At bedtime, Michael was suddenly extremely anxious and upset. He kept telling me he missed his friend Ozzie, a friend that made a big impact on him back home in New Jersey. He said, “Mommy they will all be strangers. I won’t know anyone. I am so scared”, as the tears streamed from his eyes. My heart was breaking, as I tried to soothe him to sleep. I tried my best to reassure him that all would be fine. I reminded him that Jordan would be with him on the bus as well. I sat on the floor next to his bed and rubbed his back.

(Note: Michael and Jordan share a bedroom)

Jordan was laying in bed, quietly listening to my exchange with Michael. When he finally sarted to calm a little, he started to doze. I kissed his cheek, kissed her cheek and quietly walked out of the room.

Within about 5 minutes I could hear the two of them talking. Michael was crying again.

Here is where my speechless part enters:

A moment later Jordan walked out of the room. She said, “Mommy, since Michael is still scared, I will sleep on the floor next to his bed.” I walked upstairs to find that in the few minutes I heard them taking, she had taken her blanket, pillow and stuffed animals off her bed. She set them all up on the floor right next to his bed, and was planning to camp out there for the night. I didn’t know what to say. It took a minute, but my brain kicked in. I told her how sweet that was of her, but I wanted to be sure she also got a good night’s sleep. So we put everything back, and I tucked her in to her bed. I again sat on the floor next to Michael, again rubbing his back, until this time I knew he was sleeping.

I walked out once more and all I could think was, what an amazing and caring tiny human she is.

I will write about their first day, another time. I wanted this post to be about them.

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Mahalo

I know I have been pretty quiet lately. With the move this summer and an impromptu visit to my mother’s, I just haven’t had a chance to sit down and write anything. That is until now.

This past weekend Michael had the amazing opportunity to be involved in the Surfers Healing one day surf camp. For those of you not familiar with it: It is a one day camp in which wonderful volunteers give their time and show autistic children how to surf….YES…SURF! I have tried to get him in, in the past. I was always too late, and the drive for a wait list spot was just too long. This year, a few months back, a friend had posted that there was a camp in Virginia. I knew we would be living here by then. So, there I sat. Finger poised….waiting for registration to open. As soon as it did, I got him in. I was so happy.

I had been showing Michael the video on the Surfers Healing website. I was trying to prepare him for it. He was very excited and was talking about it…a lot.

Fast forward to last Saturday. His scheduled surf time was 10:30 am. We arrived at the beach about 9:30. We parked the car and walked over. I could see in the parking lot, lots of other families who I assumed were also attending. When we walked to the beach, the first thing I noticed was the “red carpet”. The stairs that lead to the sand had a red carpet (made out of wood planks and sort of red astro turf-ish type material that you could walk on, all the way to your registration point) That was so great for kids who have sensory problems walking in the sand, as Michael once did. We checked in and then were given a wrist band with our group number. We were told that there was lunch being served at a few different times  during the day, and that we were welcomed to eat. I had forgotten our beach umbrella. Much to my relief, they had a bunch  set up for anyone who wanted to seek some shade. We set up camp under an umbrella, and waited.

One of the volunteers, named Linda, saw us sitting and came over to chat. She talked to Michael and told him how much fun he would have. He was engaged and excited. Linda told me that she had been volunteering for Surfer’s Healing for 10 years now, and that this was the first year that the Virginia camp was 2 days. That way they could accommodate more children. She said there would be somewhere around 400 children who would get to surf.

At 10:30 we heard our group number called. We got to where they were fitting the children for live vests. They checked my wristband, and took Michael by the hand. While they took Michael in to be fitted, there was a little boy also getting fitted. He was not happy. He was crying, and that set Michael off. I was holding his hand and telling him everything would be fine, that the boy just didn’t like the life jacket. Michael was visibly upset now as one of the volunteers talked to him. He kept asking, “But what if I get scared”, and he also started to cry. It was tearing my heart out, but I let the volunteer do her thing. She kept reassuring him that he would do great and love it. Once he was fitted, another volunteer came over and led him to his surf instructor. All the while, they were talking to him making him comfortable. He was met with Kalani Brown, one of the many volunteer surf instructors and his surfboard. Next thing I knew they whisked him to the water’s edge where there even more volunteers waiting. He got right on the board and Kalani paddled them out. The pictures that follow will show you some of what I watched that day.image

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I had tears in my eyes watching him out there. He LOVED it. He got to go back out there 5 or maybe 6 times…I lost count because I was just so amazed at what I was watching. Each time they rode that board back in Michael exclaimed, “AGAIN, AGAIN, AGAIN!!!”

When he was all finished he got a medal. “A real metal medal, mommy!!!”

If you ever have the chance to sign your child up for this, you will not regret it. It was run so very well.  It was also a free event.

I just cannot say enough..other than Mahalo (Thank You in Hawaiian) to Izzy Paskowitz, and his amazing group of volunteers for making this such a wonderful experience for all.

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For more information about Surfers Healing, here is their website and Facebook page.
http://www.surfershealing.org/

http://facebook.com/Surf2Heal

The Final Countdown

So, today is June 1.

The official move countdown has begun, for me. I have had “The Final Countdown” stuck in my head all day. In just 30 days we will be in our new home. It is the move Jason and I have been toying with, and talking about for years. It is the move we both have wanted for so long.

All of a sudden it is becoming very real. We are leaving our life behind. We are leaving our friends behind. Last week as I started taking down decorations and pictures I was hit with overwhelming sadness. This was our first home, where our children have grown up.

I know, I know…people move all the time….so I have been told. Somehow, hearing that doesn’t make me feel better. It sort of reminds me of when people say…”Things could always be worse”, when you are having a bad day. It is dismissive, and not helpful. The whole experience is becoming more overwhelming than I ever thought it would be.

The kids seem to be dealing with it pretty well for the moment, so that allows me a sigh of relief. At least for now. I know it will be bumpy and a learning curve for them as well.

For now I will mark the days off the calendar, and continue to prepare. July 1 will be here in the blink of an eye.

Our everyday

It is THAT time of year again.

It is almost April, and that means you will see and hear all things autism for a WHOLE MONTH.

However, autism doesn’t begin and end in April though. For many of us, autism is year round. Autism is our everyday.

Autism is not a thing to be feared. Our loved ones need to be embraced. They need to be accepted. They need to be understood.

Do you not know much about autism? Do you have a question about autism? Ask an autistic. Ask a parent, sibling or caregiver of an autistic child. My bet is that if you did, your questions would be welcomed because:

Autism is our everyday.

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That beautiful face you see up there, he is my son Michael.

Does he have ups and downs? Of course. We all do at one point or another.

But…he is happy. He is smart.  He has a magnetic personality. He has a smile that can melt your heart. He is one of the most caring and empathetic people I know. I love him more than life itself, as I do all three of my children. He is a face of autism. He is our everday, and I wouldn’t change that for the world.

#AutismIsOurEverday

***Want to learn more about autism? This link is a great reference: http://m.wikihow.com/Explain-Autism-to-People

The view was amazing

Friday was “Dress up as your favorite book character day” at school. Michael wanted to be Baby Bird, from the book Are You My Mother. I posted this picture last week:

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He didn’t want a real costume so I made him that. He loved his wings, and was so excited to go to school and show them off.

What I didn’t realize until he got home from school, was that he really WAS going to get to show them off. Jordan began to tell me that there was a contest in school. Children were picked from each class and brought up on stage. Well….Michael was picked!

A friend of mine, Jessie, saw the picture I posted and sent me this message about what her son Owen said:

“I think Michael should have won the contest.  I dont know his last name, but he was at our bus stop.  It wasn’t just his costume, it was the way he walked across the stage, he did so well”.

As I read that message to my husband, I could not hold back my tears. What a sweet thing Owen said. He has a heart of gold. And…AND, I imagined Michael walking across that stage…beaming..so proud of himself.

I have been crying an ugly cry, with happy tears, while writing this.

I wish I had gotten to see that moment. But, thanks to Owen, I got to see it through his eyes…and the view was amazing.

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***Many thanks to Jessie for sharing her conversation with Owen, with me***

Life is a Wiggle

Yesterday was IEP day. It always causes me anxiety and stress. It was the reason that this meme was born:

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In the days leading up to it I try to mentally prepare myself for it. I have to admit, I can’t say I have really ever had a bad experience. For that, I am grateful. I really do feel that his team has always had his best interests at heart.

It is just the whole process that puts me on edge. It makes me feel..anxious, uneasy and uncomfortable. I have always attended the meetings alone. Unless of course you count last year. Jordan, my 6 year old at the time, had to come with me. I jokingly called her my “Little Enforcer”.

Yesterday’s meeting went well. He got the services I believe he needs.

The part that gets me, is hearing about where he struggles. It is not something I talk about here often. He does struggle, in so many areas. It is hard to listen to. I know it is coming, but it never makes it easier to hear. Of course I hear the good things too, but it is the struggles that stay in the front of my mind. I left and felt, for lack of a better word, Blah all day. I spent most of it in a sort of fog.

Then, he got home from school. He got off the bus and flashed his handsome little grin at me. “Hi mommy! You know, it is raining out!” He proceeded to walk to the car giggling, and trying to catch the raindrops on his tongue. I just watched him and smiled.

We got home from the bus stop. “Mommy, will you come watch Angry Birds Tunes with me?” Of course I did. And he laughed, his most contagious belly laugh. How could a person not feel better after hearing their child snort from laughing so much.

Yep…some things are more difficult for him, and they may always be. I don’t know what the future holds and I TRY not to think ahead too much. BUT, he works so hard. He has made such progress over the last few years. I have to remind myself of that on days like yesterday. There will always be hiccups, but he is healthy and happy. I really can’t ask for more than that.

As I was writing this, I saw my friend Jane post a picture of the fortune her daughter Janelle got in her fortune cookie. I loved it, and thought it was fitting here:

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We were lucky

Many of you know that I am not only any autism mom, I am also an allergy mom. My older son has life threatening food allergies.

Thanksgiving day 2007:
David was four years old. My friend and her family came over to spend the day. We had finished eating dinner. A while later David told me he was hungry. We had granola bars in the cabinet. We always had them. He loved them. I told him he could have one. He unwrapped it and took a bite. Within a minute or two he began to tell me he didn’t feel well. His tummy was hurting. He laid down on the couch. I walked into the kitchen to get him some ginger ale, and while I was in there I heard him start to cough. I ran back to him. His eye was almost swollen shut, he was coughing uncontrollably and starting to vomit now as well.

I HAD NO IDEA WHAT WAS WRONG WITH HIM.

It happened so fast. I racked my brain trying to figure what could have happened. Then it hit me…Could it have been the granola bar? I read the label. PEANUT BUTTER granola bar. He never had peanut butter before. Panicked, I called the pediatrician. Of course it was the on call service because it was Thanksgiving night. We gave him benadryl as we waited for doctor to call back. Now hives were popping out all over his little body. One dose of benadryl down, and it came right back up. I was trying to clean him up and gave him a second dose of benadryl when the doctor called back. I explained what happened, and he told me to get to an emergency room right now.

I drove him there….DROVE HIM. I wasn’t thinking. I just put him in the car, and drove as fast as I could.

When we got to the ER they shuffled us through so fast. They insterted a picc line in his arm just in case he had a “rebound reaction”. A what??? This was all new to me. We spent a few hours there while they monitored him. The ER doctor began to explain that WE WERE LUCKY. Hearing that made me break down. My adrenneline was pumping so much, that when the dust settled, I realized just how bad it really could have been.

WE WERE LUCKY. In the days that followed we saw his pediatrician and we went to the allergist. We learned he is HIGHLY allergic to peanuts and tree nuts, among other things.

I also found out, after his diagnosis, that I am allergic to tree nuts. I was 35 years old. My whole life, I never knew. I just suspected it and just stayed away from tree nuts. I never saw an allergist until that day. My parents never knew. Again the allergist used the word “lucky” to describe MY life experience as well.

We both left that visit armed with Epi-Pens. I left that visit hoping we would never need to use them. To this day, we haven’t. I am hypervigilant. I have to be.

To people that think food allergies are a joke, or are not that serious: Watch your child go through what mine did, after ONE BITE of a peanut butter granola bar.

WE WERE LUCKY.

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This is me and David. He is 10 now.

#FoodAllergyLivesMatter
#FARE
#LoveRemembers2015

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