This post is going to step on some toes. I don't really care because it's not meant to bring harm to anyone. I'm only pointing out something that I have noticed. Something that us parents of children with autism (actually all parents do it, but all children aren't who this blog is about) keep doing to one another.
It was about a month ago, give or take a few days. Henry was having his therapy, which has been dropped to two nights a week. He is in preschool now so we don't do it as often. His therapist has a little dry erase board that Henry loves. She writes, he erases. It's their game.
On this day in particular the therapist had been writing words and Henry was actually saying them! Some were sight words, others were not. He even did a few 2 word phrases. As you can imagine, I was so stinking excited! Just like any excited mother (neuro-typical kids or not) in this day in time, I immediately posted about my genius son** on Facebook. Sort of kidding there. I didn't post that he was a genius, just what he had done and it probably had a million "!!!!" somewhere in the post.
Boy, was my excitement shot down with the quickness. I got a few yays and "way to go"s, but what stood out the most were the "It's typical." "Kids with autism do that early"s. To be honest, as proud as I was of my boy, my heart was broken and my spirit was shot down. Why? I don't know. I'll never understand what goes through other people's minds.
You know what though. It wasn't fair to me and it wasn't fair to Henry even though he may not have had a clue what was going on. Had my child been neurotypical, his first time reading would have been an amazing thing. There would have been cheers all around. Since he has autism though, it was almost as if I shouldn't have been excited. I should have just been expecting it because you know...kids with autism read early. It's nothing special.**
I won't let that happen anymore. Ever. I will from now on rejoice in everything that I feel needs rejoicing. Screw what the books say about autism. My bubble was burst. I'm sure I've been guilty of bursting bubbles myself. The only way to stop it is for us parents to stop it. We have to stop acting like our children are different than others, we have to celebrate EVERYTHING, we have to stop telling each other how to do things.
Is it possible for us to connect with each other, support each other, and pat each other on the back without pulling statistics and research into it? Is it possible to just give each other our moments?
**If something had this by it in this post, it was sarcasm. No, I don't think my son is all knowing genius. But if I did, would you let me have that or shoot it down? Who would it hurt?
Thursday, October 6, 2011
Sunday, September 4, 2011
It's building up
Well, something has been building up. I had a post about something entirely different planned for tonight or tomorrow, but I've decided to write about our weekend and how it has felt. In our last post, everything was wonderful, but I can't lie and say that it is always that way.
The day after I wrote that blog post there was a different feeling in our house. Something on edge, something uneasy. Something building up. On the 1st and 2nd, Henry was just acting differently. I can't even pinpoint what it was. Maybe it was just mama instinct. He was a little more whiney than normal, but some of it was his new faux-crying (which I need to get on camera for you guys because it's awesome). Then on the morning of the 3rd, he was very upset. Everything bothered him, even the normal things that made him happy. We had his little sister's birthday party planned for the evening, but we hadn't begun to prepare yet so I don't think it had anything to do with it. Around 9am or a little after, my husband left to go pick up some inflatable bounce castles and things erupted.
I was cleaning up from breakfast and heard my smallest scream. This wasn't a normal "Bubby's bothering me" scream, this was loud. I looked over the bar and Henry had her in the floor pulling her hair. Normal brother behavior, yes. But he wouldn't stop. He kept going straight for her every time I let him go. He really had it in his mind that he was going to hurt her. It wasn't my boy. His eyes weren't the same. I took him into his room and tried to calm him down, but he kept trying to get out and get to his sister again. This all turned into the first time I have ever had to hold my baby down. It took 20-30 minutes of wrangling him before he finally wore himself out enough for me to let go. I would try to hold his legs down and he would scratch at his face and sit up with no effort at all in order to get to my face. So I had to hold his entire body to keep him from hurting his sister, myself, or himself. It was the hardest thing that I have ever had to do. The longest half hour of my life. He finally fell asleep for a couple of hours and all seemed to return to normal. He even did great at the party that night! Maybe he just needed some rest.
This morning was right back to the same though. He was fighting his sister and us. We went to church and I just had a gut feeling that I needed to stay with him and keep my eyes on him. Sure enough, he tried to hurt a kiddo there. He's smart about this and I don't know where he got it or if it's an instinct thing. He grabs these kids from behind and tries to pull them to the ground. It's awful and I'm left feeling like a bad guy over the entire situation.
The looks from other parents are so hurtful. The blank stares when you apologize and drag your son off to hold him down again are downright heartbreaking. The whispers that you catch the tail end of when you turn back around would bring tears if I weren't a strong mama.
We had another birthday party to attend today. I really wanted to go because the birthday girl has some pretty awesome parents and a few of the other guests are just as awesome. :) My intention was to enjoy the party and keep an eye on Henry. I did enjoy the party and what little small talk I could get in. I just forgot how much work it is to actually "keep up" with Henry. Sometimes I forget that he never stops, ever. He runs in his sleep! Maybe I had a momentary lapse in judgement. He only tried to get to one kiddo there and I was able to grab him up before there was even an issue. That's why I stay RIGHT with him. Not in the other room, not across the room. Right there. No one wants to have "that kid", the one who beats up all of the others. Nope, not even us mothers of special little guys want that. I won't let autism be an excuse as to why he hurt someone else. My goal is to just not let it happen in the first place. I was just apparently slow a few times today. Luckily, no one at the party batted an eye at Henry or at the mother who wouldn't just let her kid play. No one even seemed to notice when he jumped into the pool with his clothes on...yes, that was another slow mommy moment. I really enjoyed it, but it has been an exhausting few days. I feel guilty for sometimes thinking "I wish things were just normal for us." because I know that this is our "normal" and that I need to embrace it more and learn to love it, good and bad.
Henry starts preschool the day after tomorrow so I'm trying to relish these last few days and not wish that bedtime would come. I have a lot of fears about the coming days, but I'm sure that my sweet boy will prove my mind wrong once again and everything will go as smoothly as it can. At least I'll hope that's how it goes.
The day after I wrote that blog post there was a different feeling in our house. Something on edge, something uneasy. Something building up. On the 1st and 2nd, Henry was just acting differently. I can't even pinpoint what it was. Maybe it was just mama instinct. He was a little more whiney than normal, but some of it was his new faux-crying (which I need to get on camera for you guys because it's awesome). Then on the morning of the 3rd, he was very upset. Everything bothered him, even the normal things that made him happy. We had his little sister's birthday party planned for the evening, but we hadn't begun to prepare yet so I don't think it had anything to do with it. Around 9am or a little after, my husband left to go pick up some inflatable bounce castles and things erupted.
I was cleaning up from breakfast and heard my smallest scream. This wasn't a normal "Bubby's bothering me" scream, this was loud. I looked over the bar and Henry had her in the floor pulling her hair. Normal brother behavior, yes. But he wouldn't stop. He kept going straight for her every time I let him go. He really had it in his mind that he was going to hurt her. It wasn't my boy. His eyes weren't the same. I took him into his room and tried to calm him down, but he kept trying to get out and get to his sister again. This all turned into the first time I have ever had to hold my baby down. It took 20-30 minutes of wrangling him before he finally wore himself out enough for me to let go. I would try to hold his legs down and he would scratch at his face and sit up with no effort at all in order to get to my face. So I had to hold his entire body to keep him from hurting his sister, myself, or himself. It was the hardest thing that I have ever had to do. The longest half hour of my life. He finally fell asleep for a couple of hours and all seemed to return to normal. He even did great at the party that night! Maybe he just needed some rest.
This morning was right back to the same though. He was fighting his sister and us. We went to church and I just had a gut feeling that I needed to stay with him and keep my eyes on him. Sure enough, he tried to hurt a kiddo there. He's smart about this and I don't know where he got it or if it's an instinct thing. He grabs these kids from behind and tries to pull them to the ground. It's awful and I'm left feeling like a bad guy over the entire situation.
The looks from other parents are so hurtful. The blank stares when you apologize and drag your son off to hold him down again are downright heartbreaking. The whispers that you catch the tail end of when you turn back around would bring tears if I weren't a strong mama.
We had another birthday party to attend today. I really wanted to go because the birthday girl has some pretty awesome parents and a few of the other guests are just as awesome. :) My intention was to enjoy the party and keep an eye on Henry. I did enjoy the party and what little small talk I could get in. I just forgot how much work it is to actually "keep up" with Henry. Sometimes I forget that he never stops, ever. He runs in his sleep! Maybe I had a momentary lapse in judgement. He only tried to get to one kiddo there and I was able to grab him up before there was even an issue. That's why I stay RIGHT with him. Not in the other room, not across the room. Right there. No one wants to have "that kid", the one who beats up all of the others. Nope, not even us mothers of special little guys want that. I won't let autism be an excuse as to why he hurt someone else. My goal is to just not let it happen in the first place. I was just apparently slow a few times today. Luckily, no one at the party batted an eye at Henry or at the mother who wouldn't just let her kid play. No one even seemed to notice when he jumped into the pool with his clothes on...yes, that was another slow mommy moment. I really enjoyed it, but it has been an exhausting few days. I feel guilty for sometimes thinking "I wish things were just normal for us." because I know that this is our "normal" and that I need to embrace it more and learn to love it, good and bad.
Henry starts preschool the day after tomorrow so I'm trying to relish these last few days and not wish that bedtime would come. I have a lot of fears about the coming days, but I'm sure that my sweet boy will prove my mind wrong once again and everything will go as smoothly as it can. At least I'll hope that's how it goes.
Wednesday, August 31, 2011
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.
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.
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.
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