Surfers Healing 2011

I've neglected you again, dear blog followers. Life is like that sometimes. Those little things running around that I keep calling my children sometimes trump sitting down at the computer for periods long enough to type out a blog post. I may have found a way around that, but we'll see.

So, onto my post!

On August 22, 2011, Wrightsville Beach, here in the awesome state of North Carolina, was overtaken by one of the most beautiful things I have ever witnessed. Almost 200 children (all with some form of ASD), their parents, some amazing surfers from all over, and a giant group of volunteers descended upon that beach before the sun had even finished rising. They were all there for Surfers Healing, an awesome, wonderful, believe it or not life changing event.

What is Surfers Healing? I thought everyone knew. I had heard about it years ago, but I never thought much of it. Not until Henry came along anyway. Then I learned that not many people really knew what it was. Surfers Healing was founded by Izzy and Danielle Paskowitz. Their son Isaiah was diagnosed at the age of 3 with autism and, like so many other autistic children (yes, I said "autistic" and I realize this goes against other posts, but we'll go there another day because people change and sometimes they go in circles. Anyway!)......like so many other autistic children, Isaiah found peace in the ocean. Izzy, a former competitive surfer, got Isaiah out on his board and it made a tremendous impact. Thus, Surfers Healing: A Foundation for Autism was born.

This was an amazing day. We got there around 8:30 in the morning. I expected Henry to be in full on meltdown mode because 1) it was morning, my boy doesn't do mornings. 2) It was different. My boy doesn't like different. But, there must have been a peace over everyone because there were no tantrums and there was no stress. We were a little early, so we registered and Henry played. I watched the surfers in the water. I don't think I would call it practice because these guys and girls know what they're doing. Maybe getting ready is a better way to put it. It was beautiful.

Henry played in the water until it was his time to surf. It took me a while to stop and realize how relaxed we all were. We didn't have to worry about the "what ifs" that go along with having a child with autism. What if he throws a fit? What if he disturbs someone? What if he runs over someone's belongings? Yep, ALL parents worry about these things, but throw autism into the picture and you have to worry about it constantly. It's not if they take off and run over someone's stuff, it's when they do it. Nope....no one here cared. I don't mean that in a bad way. They empathized, they understood, but there was just a knowing that no one parent here would be judging another. Our day was great from there, from that moment that I realized that we were going to enjoy a morning on the beach and nothing that happened that may be out of the ordinary, was going to be out of the ordinary. So we played while waiting for Henry's surf time. 

The event started out with a prayer circle. I watched everyone get in a circle. Then I watched as that circle kept growing and growing, and growing some more. I would have had to either stand way back or have a wide angle lens to capture it all. 

We enjoyed some more time on the beach, and then the 9:30 surf times were called. That was us! So, we got in line at the life vest station. Henry was still doing great. He didn't fight because he had to wait for something. Henry is just like his mother, we aren't a patient family. It's one of our shortcomings. He did great though! Then.....oh then. I realized that I wasn't going with him! *Gasp!* You mean they weren't going to let me hold his hand the entire time?! I knew this, but it didn't hit until then. He went with his first volunteer who fitted him with his vest. They then stood there while waiting for the next surfer to be ready. They played and sang songs. Henry loved it. 

It was time! Henry's surfer was ready and he was going to surf!!! Henry's surfer, Cari talked to him some and then they went out into the water. My little buddy was a natural at this! There were no tears and no fears. Luckily, he has been raised around the ocean. I guess that's a perk of his Daddy being in the Navy. Some children were afraid, but these volunteers were amazing with helping to calm them down and get them out there. Families drove for hours to go to this camp, so some of the children had never seen this big ol' body of moving water. I can't imagine what that's like, but I think if I weren't also raised around it that I would be scared to death of it too. Meanwhile...back to the post (my ADHD is showing!) Henry was in the water and on a board!! They caught some waves, they chatted, they laughed and had a good time! I think he was in the water for half an hour or so. At least it seemed like it. He had a blast! The board they were on said something about a surf school. He read it to Cari and they joked about it because he found it funny. 

He was in Heaven. I just knew that when he got out of the water that he would be so upset! He proved me wrong! He was in such a good mood that it just carried on and on through his entire day. We stayed a couple of hours longer until Henry started getting tired. Then we started home. He walked to the van, holding his Daddy's hand, still smiling and talking about "surf school". The entire ride home he smiled, occasionally letting out the biggest laughs ever. He was still on cloud 9. It didn't end there! It went on for days! In fact, here we are, well over a week later and we are still hearing about surf school. 

Surfing had some sort of impact on Henry that I can't explain. He is talking more. He is happier. He has slept better on most nights, needed less "apple ju squeeze" (that's apple juice, please to those that don't speak Henrenese), and just has this happiness radiating from his little body. It's amazing. I want to start helping this organization in anyway that I possibly can. Fundraisers (attending and possibly holding), plugging, whatever I have to do, I will do it. I want every kid with autism out there to have a chance to do this. I want to shout from the rooftops how great Surfers Healing is. I've gotten a pretty good start by telling everyone we know and every stranger that doesn't care about it. I'll be "harping" on it even more in the future. So get used to that. I've been looking for something that would draw me in and that I could get involved in. I found my something in Surfers Healing. 

If you're able and have it in your heart, please consider taking a moment and visiting the Surfers Healing website to take a look around. http://www.surfershealing.org Please consider donating to this amazing cause if you can.

Things that Autism has taught me

Having a son with autism has taught me many things. I want to have these things written down somewhere so that I may look back on them when I need to. Sometimes I get caught up in the negatives. I am hoping that looking back on what I have learned will help get me out of those slumps when they hit. This will just be a random list. It may, at times, seem like rambling. I'm sure you can forgive me just this once, right? :)


I have learned PATIENCE. A whole new level of patience that I never knew existed or thought only belonged to the Duggars. Years ago, I would have been the mom who lost her mind. Because of Henry I have learned that I do have it within me to patiently try to deal with things that come up.

I have learned ACCEPTANCE. Accepting autism was hard for me. I remember jumping into things looking for that magical cure that doesn't exist. "Not my baby boy", I thought many times. He will not live this life. Now I know that he does live it. He lives it every, single day of his life and so do I.

I have learned TOLERANCE. I'm still working on that one, but I'm getting there. I do still want to kill people when they make ignorant comments. I just don't think about it as much now. Who am I kidding? Maybe we should scratch that one for now. Let's change it.

I have learned that those who don't accept my boy are MISSING OUT. They're missing out on what a great kid they can be. Someday, when Henry is the scientist that discovers something amazing or the artist whose work sells for millions, they will wish that they were nicer and more willing to learn about him.

I have learned that GOD did not "do this to me" or to Henry. I did this. I know when my boy regressed and I know what caused it. I also know that it happened because I did not stand up for what I believed in. Its ok. I've come to terms with it and I forgive myself. Now, we only move forward.

I have learned that THERAPY WORKS. No. Henry still isn't at the point of communicating everyday things, but he is trying. He has so many words now. His receptive language and understanding is getting so much better. Just today, I told him that we pee pee on the potty and he told me "no no no potty". I'll take sassy if it's all I can get.

I have learned that my feelings will be HURT. Not long ago, Henry said "I love you" in a way that he really meant it. He said it to someone else. That hurt more than I could have ever imagined. It hurts that he is always an angel for other people, but when its us here at home, he hits and squeezes and kicks and screams. But then a good friend, said something very comforting to me and it was that....

I am Henry's SAFE PLACE. When the rest of the world expects a well behaved child and sneers when he isn't that. I am the place that he can go when he feels the need to break down. I am the person he can go to and cry. I am the person he feels the safest with in doing that. When people stare because he is shaking his head from side to side, he always looks up at me like he is looking for reassurance. Shake away, baby. Shake away. Mommy won't let anyone say a word.

So this is where we are

I haven't updated in ages. We stay pretty busy these days. Henry is now receiving ABA therapy with a wonderful tudor 5 days a week for around 3 hours a day. We are still doing the occupational therapy, but have knocked it down to 1 hour once a week and the CBRS (play therapy for cognitive and social-emotional issues) is now at every other week for 1 hour. By the time the weekend rolls around, all of us are exhausted.

Its all helping though. Mostly the ABA, in my opinion, but I'm not ready to drop the others just yet. Henry is saying a ton of words now with prompting and quite a few with no prompting at all. He identifies many objects now and he is requesting drink ("apple juice", everything is apple juice) and food (by saying "eat"). He also asks for cookies fairly often. :)

Just this week we wrapped up the assessment for the NC pre-k exceptional children's program. He was accepted into the program and will start this coming up August. I could have had him start on his birthday, but there is only a week of school left at that point so I don't see the need to start then. The IEP is made. He will receive a 1 on 1 assistant until he adjusts to the classroom because, as you can imagine, he was very overstimulated during the time that he spent in the classroom the other day. They will provide his occupational therapy there at the school so at that time, we will no longer be doing it here at home. I hope to continue ABA after school. If it is all too much, I will then make a decision as to what his helping him along more.

I feel that him going to preschool will help our entire family out. It will provide mama with a break during the day. Henry will be able to learn to enjoy time with others or just people watch, as he loves to do. He will get time to play outdoors on playground equipment. This is something that I haven't been able to do because I can't figure out how to keep up with 2 toddlers on a playground. They both run in opposite directions and they both climb the highest thing they can find! I will be able to spend a little more 1 on 1 time with Avaleigh. I'm sure by now she thinks that therapists are just a part of everyday life. My guess is that her little world might be thrown for a loop when there aren't people showing up all day to work with "them". Yes, she thinks everyone is here to see her! I feel a little guilty because I had plenty of time for just Abigayle and myself, and this will give me plenty of time for just Avaleigh and myself, but I'm not sure how I'm going to work in time for just Henry and I. I'm sure I will work something out though.

We also just started a new metabolic supplement, but not much to report on that so far since I just began giving it to Henry today. I guess we will know soon whether we were ripped off or not, but there's no harm in giving it a try. I'm not trying to cure my boy by any means. I'm hoping that this will make him have better days without so much anger and frustration. I will report later how that is working out for us.

For now, this is all I've got! One day I'll find that balance between blogging and real life, but until then, sporadic posting is enough for me.