10 cool things about Landy

His love for music.

If you know me, you know that music is a huge part of my life. I am so glad that this is something that Landon and I have in common. We discovered his love for music at a young age as it was something we could use to help him when he was upset. We have music playing almost all day long and he picks random songs to be his song of the day that he will insist we listen to on repeat. Thankfully I like his taste in music...mostly. 

His natural musical talent. 

There are not too many things that bring me more joy than hearing Landon harmonize along to a song. I had always hoped that he would take after me in that department and not his daddy. Sorry Jay! He definitely has an ear for music and I never tire of seeing him playing around on the piano. It's so cool to see him find notes that work together and figure out chords. He will sometimes start playing along to a song that we are listening to and I can't help but stop whatever I am doing to turn and listen. I can't wait to see what he does with music in the future.

His sense of humor. 

He loves to make people laugh. When he figures out something that makes someone laugh he will do it for that person every time he is around them. Right now he does a funny face that makes me laugh and he will randomly come up to me and put his face right in front of mine until I laugh at it. It is so darn cute when he tries to be funny. He will purposefully say the wrong answer sometimes and then laugh because he thinks he's hilarious. I love that he laughs at his own jokes.

He uses echo location.

When he was a toddler he started to click his tongue for echo location. When he's not totally sure of his surroundings he will click his tongue to get an idea of what is around him. He can tell if he's in an open space, if there are walls near by, or if he has walked passed a doorway. It's pretty amazing when I am walking down a hallway with him and he can tell when we walk by a room. He likes to stop and listen to the different sounds that his clicking makes bouncing off walls or going into the open room. He's so good at navigating his way around that it can be easy to forget sometimes that he really can't see where he's going. It's amazing to watch.

His memory.

I am amazed at the things that he can remember in detail. We will often hear him replaying a conversation that he had with someone earlier that day or months before. Some conversations he finds particularly interesting or funny and he will repeat them often. Sometimes he wants you to play along and recite the other half of the conversation but you have to say it exactly the way he remembers it or he'll make you do it over and over and over again until you have it right.

His love of water. 

It is a rainy cold day today but if I set up the kiddy pool, Landon would be in that thing all day. He would probably also ask me for some water balloons. Going swimming is the only thing that we can do as a family and know that Landon will have a great time. Its also nice that I don't have to fight him to have a bath because he would have 3 a day if it was up to him. I'm so looking forward to warmer weather so we can spend all day in the yard and he will be a happy boy!

He is fearless. 

This is also something that I find terrifying as a mother but I love that he is not afraid to climb and play like a typical boy. It's hard to watch as he figures out what he is capable of, because my first instinct is to hold his hand and walk him through it. What I've learned about him is that he is more aware of his body and his balance than a sighted boy, so he is quite careful. He taught himself how to swing and he loves to go really high. I am confident in his ability and I can relax now as I watch him climb and do the things that little boys love to do. 

He doesn't get dizzy.

I am certain that Landon would make it into the Guiness Book of World Records for most consecutive spins. He spins the most when he hears something interesting or is listening to music. He loves the little spinning seats at the playground and he could go around and around for hours. I get dizzy watching him.

His hearing.

He has a heightened sense of hearing to make up for his lack of sight. Sometime he will stop in his tracks and you can tell that he is hearing something- I will listen to try and figure out what he hears and then notice that there is a leaf blower being used across town. It makes it hard to get away with things though. He loves to turn all of the fans on in our house and if we ever try to quietly turn one off he will quickly come from the other side of the house to turn it back on. We will often fake cough over the sound of flipping a switch so that he doesn't hear it! 

He likes to cuddle. 

I feel very fortunate that Landon can be affectionate because it is common for children on the spectrum to not want to be touched or show affection. When he is feeling ok, he likes to climb onto our lap and have a cuddle. He gives a really good hug and he lets me kiss his cheeks many times through out the day. In fact, he will try and bribe me with a kiss on the cheek to get what he wants. Even though he is a very big boy, I still love to hold him in my arms like he's still my baby. He's taking after daddy in the height department so I'm not going to be able to do that for too much longer. I'll get as much cuddles in now while I can! 

I also wanted to give a little update on how it went with Landon's shots last week. Thanks to those of you that prayed for us, I couldn't believe how amazingly well it went! It is usually so hard to take Landon to the doctor. When we have tried before, it has gone so poorly that we were referred to have a pediatrician come to our house to see him. Even then, Landon wouldn't let the doctor do any kind of check up. Landon was due for his kindergarten immunization at the beginning of the school year but I put it off knowing that it would be a struggle. The day started off well because Landy slept until 8 am which is a miracle in itself! With a little bribery (first Nurse then Auntie Anne's house) we were on our way. I kept telling him over and over, on our way there, that we were going to see the nurse because I know that if we just show up at a new place without warning he won't even go in. He walked into the the health unit and sat nicely in the waiting area for about 5 minutes. I was happy that it was going so well already. I think it helped having a man with a sniffly nose in the waiting area because Landy enjoyed copying him every time the man sniffled. He did protest a little as we had to move into another room but he got over it quickly. "Thank you, Jesus!" ran through my mind continuously. I brought a few things to keep him occupied. The nurse was nice and calm which was perfect because an over powering personality can really throw him off. They decided to do the two shots at once while I bear hugged him and it was over before we knew it. He cried a little from the pain but was happy again in a few moments. He even sat in the waiting area afterwards for 10 minutes while we waited to make sure there was not a bad reaction to the vaccine. We walked out hand in hand and I was laughing at how easy it was!

That's it for today.
-Esther

Bomb Squad

Before we had kids, I imagined the things that we would be able to do as a family. I dreamt about the fun activities that any kid would love to do. I had no idea that as a family we would miss out on so many family events or that going to a friends birthday party would be more stress than fun. Quite often we just decide that it won't work for us and we decide to stay home. Other times we decide to give it a go and hope for the best. Once in a while we feel so blessed because Landon had a great day and we were able to stay for the whole thing. We leave there feeling happy and can't stop talking on the way home how awesome that was! Most of the time though, we leave early feeling very discouraged and defeated. Yesterday was one of those days.

We were excited about the carnival that our church was putting on because we had a great time at the last one and this one was going to be bigger and better! Landon loves a bouncy castle and is usually happy to stand near the bouncy castle and listen to the fan that blows it up. At the last carnival he stayed in one spot, spinning and jumping to the glorious sound of the high powered fan (he loves any kind of machine that makes a steady sound). We were stoked when we walked into the carnival yesterday and saw how many bouncy castles/blow up activities that were set up. Jason and Landon quickly found a good fan to spin by (he can spin for hours and not get dizzy) and I was able to take Adrianah into see some circus acts. After the show we came back out and I was happy to see that Landon was still doing well and was enjoying a snack. It's funny that I can get so much joy out of seeing him happily eat his fishy crackers at a crowded event. It had been an hour and we were still there! Things were going well!

Iphone pic from the carnival

Unfortunately, his mood can change within seconds. I was sitting with him now as Jason had somewhere to be, and I could see he was starting to become a little more testy.  I know that we are not far away from a melt down so I'm trying to offer him things to distract him from whatever it is that is setting him off. I'm trying to be calm but I know that if I don't get a handle on it right now it will turn into a big fight. As he's starting to get louder I can feel more eyes looking our way. I held my phone to his ear so that he could focus on a song and I thought he was starting to calm down as he continued to eat his apple sauce. I looked away for a second and felt his applesauce land on my foot and it splattered on his pants and the floor. Ok, no big deal I just need to clean it up. I'm still trying to look calm as he's getting louder and trying to lick the apple sauce off of the bottom of his shoe. Clearly, I think that's gross so I try to stop him. Bad idea. Fine, he can lick the sauce off of his dirty shoe while I clean the floor. His sister is trying to help by pulling his foot away from his mouth but he is not happy about it. I can tell at this point that there is no going back. He is done and we need to leave. I clean the floor, pack up his stuff and head to the door. Meanwhile poor Adrianah is in tears because she doesn't want to leave. I always feel so bad for her because she has to miss out on the fun because of her brothers behaviour. She's usually very understanding. She's amazing like that, but that's a post for another time.

Reading that little story might not put into perspective of what it feels like in the moment. Before I try and explain I want to make clear that I'm not trying to make my son look bad and I'm not looking for sympathy. I could go on and on about his amazing side. My boy is a sweetheart and it's the autism that makes him act this way.

When I speak of a melt down for Landon, I don't mean a two year old tantrum where there's some crying and maybe some flailing. I'm talking ear piercing screams, punches being thrown and head butts to my nose. His meltdowns make other kids tantrums seem adorable. I usually tell people that it feels like I'm trying to keep a bomb from exploding at all times. Sometimes the clock is running down and I can see that I have 10 seconds before the explosion. I'm trying to figure out which wire to cut before it's too late. Sometimes, I'm lucky and snip the right one in time but more times than not...kaboom. You know in a movie when the hero walks away from an explosion like a boss? That's what I do at home, I mean without the hair blowing in the wind and cocky grin. I simply walk away and let him do his thing. He just needs time to get over it and there is nothing I can say or do that will speed up the process. In public though, I pick him up and leave. I strap him into his seat while he screams in my face and I drive home while he two foot kicks the back of my seat. It can make us completely forget that for the first hour, we had a great time. So that's why we usually don't go.

Years ago, before autism affected our lives, we were at a park and a family sat and ate their picnic lunch while their child was freaking out on the ground. I remember thinking that they needed to teach that kid a lesson. I had no idea what I was talking about. When I think of that family now, I have so much respect for them as they most likely were dealing with autism and they didn't just pack up their picnic and run away. We are not there yet. We are still sensitive to the many glares and stares that we get in public. I know I look like a crazy woman and a terrible mom when I am dragging Landon by his jacket into school sometimes. I've had people stop in their tracks and stare with their mouths open. There have been a couple of strangers though that have gone out of their way to tell me that I'm doing a good job. Those little words can really help. If you see a mother or father struggling with a strong willed child, be encouraging or simply smile. It goes a long way.

So there's another little glimpse into our life. Next time I'm going to brag about him. Tell you all about his musical talent and his sense of humor. He really is so incredible and I want everyone to know that side of him too.

PS. I get to take Landon for some shots tomorrow. I'm really excited about it....not. Pray for us.

The start

Today I tried to find a blog to read that I could relate to. These days you can pretty much find a blog for anything. I was hoping to find one written by another mother that has a child that is blind with autism. I found plenty of blogs by autism parents but only found one by a mother with a blind and autistic child. It was so nice to read another mothers words, that I really understood. The stories of her son made me laugh and cry because they are so similar to our stories. It inspired me to start a blog of my own. I've had a blog before but I kept it light and only talked about the hard stuff in small doses. I plan to be real this time and to be honest I don't really know what that will look like. I feel the need to really show people what it is like to have autism in your home. One thing I've learned from all of this is that the world is very uninformed about Autism., let alone blindness and autism combined. The spectrum is so wide that it is impossible to know how to help each child. We are still learning how to help Landon and just when we think we have something figured out, he changes on us. It is a rollercoaster ride, to say the least! Along with giving some insight into the unique world that we live in, I hope that this blog can eventually reach another mom like me- a mom that is google searching for a blog that she can relate to.

So to start this off, I'm going to try and do a short version of this blind autism story:

When Landon was 6 weeks old we were starting to worry as he was not looking at us and around that time his eyes started to bounce around and roll so far down that you couldn't see his pupil. We asked our doctor about it and she immediately set us up a with an opthamologist. Within a couple of weeks and different tests at Children's Hospital we were told that he had Leber's Congenital Amaurosis. Apparently Jason and I both carry a rare gene that we did not know about and Landon got both from us. We were shocked. We never would have guessed that our sweet baby would not be able to see our own faces. There was a lot to learn. He was delayed in most areas- as simple tasks, like sitting up, are motivated by sight. He hated being propped up on the couch because it was uncomfortable and he didn't get the perk of having a better view point. He was doing very well though despite the struggles. We were quickly learning that blind children are absolutely amazing and can pretty much do anything, it just might take them a little longer to get there.

At 14 months he had a large list of words that he could say. Things started to change after that. He was using less and less words and was screaming more. By 2 years old he wasn't speaking at all. It was very difficult to figure out what he wanted because he didn't have the luxury of simply pointing to it. He didn't even know if what he wanted was right beside him or 10 miles away. He was frustrated. We were frustrated. At his 2 year check up we asked the doctor if we could get Landon assessed for autism. It took a full year to get a diagnosis. He was for certain on the spectrum. Even though we knew that this was the case, it was so hard to sit there and listen to another doctor giving us yet another life changing diagnosis.

2 1/2 years later and I'm still not used to it. I can honestly say it is harder than I had thought it was going to be. The lows are very low but that makes the highs feel very high. When he is feeling ok he is such a happy, funny and talented little man. He brings us so much joy and I couldn't love him more.

So there's our story in a nutshell and that's all I have for now.

~Esther