Christmas Time

We are one week away from Christmas and I'm pretty sure we just had thanksgiving when I wrote last. I must get better at doing this more frequently! (I think I've said that before)

December is my favorite. I really enjoy everything that is involved with preparing for Christmas. Even though it is by far the most hectic time of the year. I try hard to have a healthy balance of making things fun for Adrianah while teaching her the importance of being generous and stepping out of our comfort zone to give of our time, talents and gifts to bless others. All the while, celebrating and being in awe of the hope and light that came to such a dark earth when Jesus came. The best gift of all.

Christmas for Landon is a completely different experience. It's hard not to feel sad for him when we think of all that he doesn't get to experience. Christmas lights are such a special thing to see and every year we go for a drive to find the best houses in town. I'll often turn around and glance at him and he's just sitting there enjoying the Christmas music and has no idea what we are enjoying. There are so many things that I'm aware that he doesn't get to see but for some reason it's more sad at Christmas time. His only experience of our Christmas tree is that it feels kind of prickly and it makes jingly noises when he runs into it. I wish he could see how beautiful it is when it's all lit up. He has a few ornaments that play a song or have bells on them and those are special to him. He still enjoys things about Christmas it's just so much different than the things we all get to enjoy. Thankfully he loves Christmas music and that is something that we can enjoy together. Even if he wants to hear the same song over and over again.

 I'm not totally sure what he understands about Christmas because I'm not able to have a conversation with him about it. I think he's starting to realize that certain things go together, like when the big chair gets put away and the tree gets set up we listen to this kind of music. He remembers that we did this last year and will request songs or things that we did around this time last year. (ie, the big box in the video at the bottom) It's pretty amazing what he can remember. It's interesting though because he never asks or says anything about presents. Most children make lists of things they want for Christmas and are counting down to the moment they finally get to open their gifts. Landon doesn't even know that he can ask for things and we could totally get away with not buying him anything at all. He wouldn't even know what he is missing. We would never do that though. We brainstorm ideas of what he might like. He's not into any of the toys that other 6 year old boys would like. He would love a leaf blower or wood router or some kind of crazy loud machine. So for Christmas this year he's getting an air purifier for his room because he'll love the humming noise from this little machine. When picking out the air purifier we looked up reviews of each one and picked the one that got the worst reviews because it was too noisy! He'll love it! His stocking is going to be full of electric toothbrushes and ripple chips. No action figures or chocolate for this kid.

We also don't need to hide his gifts, even though it may somehow make us feel better if we did. Every time we walk into the garage and see the things we bought him just sitting out in the open it stings a little as it's a small reminder that he can't see. You'd think after 6 years it wouldn't be a surprise anymore, but once in a while we still get hit with the shocking truth that our boy is blind and it feels like a punch to the gut. Not sure that will ever go away. We found out that he was blind on Dec 8th when he was only 11 weeks old. Adrianah was 1 1/2 years old and watching her eyes fill with wonder when she saw lights, trees and presents and knowing that Landon wouldn't experience Christmas that way made it bitter sweet that year. As Landon gets older though he brings so many new amazing aspects to Christmas and it reminds me to turn the lights off and focus on the true meaning. To listen to the carols about Jesus without any distractions. My boy has no idea how much he is teaching me. So grateful for him.

Anyway here is a little video from last year that I hope puts a smile on your face.

Merry Christmas from our goofy family to yours!

Big Changes

Another month and a half has gone by since I wrote last. A lot has happened in that time and there has been some big changes. Both of the kids are back in school, praise God!  I was so relieved when I found out that the kids could go back to school as it was a very long and hard summer for Landon. He really relies on a routine and I was already worried about how summer would go before the strike came into play. Needless to say the extra month of summer break was hard on everyone in this household. Thankfully his autism program continued through the summer so at least he had 2 hours of that everyday, but I knew that that was also coming to an end. The autism program is an early intervention program so each child graduates from the program when they turn 6. As Landon's 6th birthday was quickly approaching and there was no end in sight to the teachers strike, I was concerned he would soon be without anything to do during the day. Thankfully the strike ended and Landon's first full day of school was on his 6th birthday.

The day after his birthday we had a meeting with the behaviour consultant at his program to discuss his time there coming to an end. Landon had been going there since he was 3 1/2 and I was starting to worry about how this next chapter would go, as his autism funding would drastically drop and he wouldn't be getting even close to the same amount of therapy as he had been getting for the last 2 1/2 years. So this meeting was to help give us an idea of what to do next. I knew I had a lot of work to do but found out that I have more to think about than I even thought.

The behaviour consultant confirmed some concerns of mine about Landon. I always thought that Landon was more difficult than other children on the spectrum and often wondered if there was another issue that needed to be addressed. At the meeting we discussed that they believe he may have something else going on and that we should have a mental health assessment done on him. She believes that he may have an Obsessive Compulsive Personality Disorder. At least that's what I think she called it, it's all kind of a blur to be honest. OCPD is not the same as OCD. I don't know too much about it yet but as she was talking to us about it, it all made sense. Landon often obsesses over a specific task or thing in our house and there is nothing we can do to get him to stop doing it. For example, this summer he really wanted to climb on the stove, open the microwave, knock on the inside and then shut the door all while saying the same couple phrases. Over and over and over again. It is not something we wanted him to do as he could easily burn himself if I was using the stove plus he was breaking the stove door as he was standing on it and we knew it was just a matter of time before he pulled the microwave door right off. I don't think I'm exaggerating when I say he went over to the microwave close to 100 times a day. He was obsessed. That is just one example of the many things he obsesses over. He's not able to move on to a new task unless we say the exact phrase in the exact tone that he is expecting. If we force him to move on, he breaks down. He can't handle it and doesn't know how to regulate his emotions.

So anyway the gist is we have to get him assessed...again. As I was sitting there listening to her tell us about this and use phrases like "Landon's the kind of child that should be getting 40 hours of therapy a week", I tried my best to look composed as in my head all I could think was that I can't believe we are having another discussion about a third diagnosis. We have had so many meetings with doctors and professionals since landon was a newborn and all of it kind of blurs together. Each meeting they give you the bad news and then pile on a bunch of information. It's hard to walk out of meeting remembering much of what they said. I have three vivid memories of the 'big' meetings where we found out he was blind, that he was autistic and now that he may have a mental disorder.
"I'm not convinced that he can see", is how the opthamologist at the children's hospital put it.
At Sunny Hill I remember feeling overwhelmed when the assessing dr said, "You're going to have to find a therapy team that is experienced in autism therapy as well as visual impairment."
And this last meeting, "I'm going to refer you for a mental health assessment".

I felt overwhelmed and heartbroken for my son as my deep down fear, that he might be too much for me to handle when he's a full grown boy, is now a legitimate fear. He is so strong and can be quite violent now and he's only 6. What am I going to do when he's 16 and towering over me? Will he be dangerous at school and not be allowed to go? Will I have to make the painful decision of putting him in a home after he hurts me or his sister badly? All of these questions flood through my mind. It's hard not to go there. To let your mind think of the worst case scenario. I trust God though and know that whatever it is, He will help us through it. He's already gotten us this far! So now what I need to focus on is getting him assessed and finding a behaviour consultant that is specialized in mental health and visual impairment, and that is also willing to travel to our small town. That's a tall order.

A couple of days after the meeting, I was in a dollar store with Jason while the kids were at school. It was the day before Landon's birthday party and I walked past the party supplies and realized I had nothing for the party. If you know me well, you know I love to plan a party and I love to hand make decorations and I usually go over board. I just really enjoy it! This year though I was completely consumed in what we had just recently found out at the meeting and had forgotten to do things for his party. The last few years we have rented out a gym at the town rec center because Landon loves to play in a big gym. It's usually just family that comes: few cousins and mostly adults, because Landon has no friends. This year though, most of our family wasn't coming to his party so there was only 4 other people coming. I got hit so hard with the reality of everything as I stood there staring at the party supplies. I think I stood there paralyzed for 5 minutes before I started to pick stuff out for him. I picked out things for the 3 goody bags I would need. All girl things for his sister and two cousins which was another reminder that my son had no friends. I'm sure there are some boys I could have invited but Landon wouldn't have played with them anyway. I got everything I needed and when I got into the car with Jason I burst into tears. He looked at me confused because what on earth could have just happened in there? My heart broke in the party section of that dollar store. My sweet, blind, autistic, obsessive compulsive son has no friends and barely anyone is coming to his birthday party. My poor boy. The funny thing is Landon didn't care. I don't think he understands what a birthday is but he likes playing in that gym and he likes hearing people sing happy birthday. He enjoyed his birthday party and it was a nice surprise when his EA from school showed up with a perfect gift for him. I wish I could have enjoyed it more. That I could have just seen the joy on his face and not seen what was missing. It's hard not to want normal things for him though. A party that is full of kids, where I can watch him run around shooting nerf guns with his friends. That's just not the way it is for him. So for now I'll just watch him giggle when his daddy pulls him on a mat around the gym, and I'll take pictures while he's clapping at the happy birthday song and I'll smile while he lays on the floor with a singing birthday card over his face.

So anyway, that's where we're at right now. I would say Landon is doing really well with all of the big changes in the last month. He's accepted the new routine of a full day at school and not going to the program anymore. He is slowly adjusting to his new classroom and teachers. Spending a little more time in his new class each day. He is starting to learn Braille and from what I've heard he is doing really well with it. I am super proud of him and even though I may feel sad with the circumstances of his life, he brings me so much joy with one smile or infectious belly laugh.
I still believe he's a gift and I know God is going to use him to do big things. He already is.

Low tide.

Wow, long time no posty! I haven't written since the kids were in school, which feels like forever ago! You'd think after such a long summer break that I would have many fun things to write about but all I feel like writing about is how difficult this summer has been. I'll try to put a positive spin on this somehow. 

Jason went back to work yesterday after 2 weeks off at home. I'm pretty sure he was looking forward to going back though. It was so nice having his help the last couple of weeks! I pretty much got to sleep in almost every morning! I'm so glad I married a morning guy! 

Anyway....Landon's autism program goes through out the summer so we planned to do things locally so he wouldn't miss out on much therapy. If you're a friend of mine on Facebook or Instagram you would probably think we have a lot of fun as a family in the summer. The photos that I post give the illusion that we are having a great time, and we do, sometimes, but it's more like 25% fun and 75% stress/disappointment/frustration. Once in a while, like 1 in 10, we have an awesome time and so that's why we continue to try and do things that "normal" families do. Last week, after an epic fail at the water slides, I said to Jason "We need to stop trying to be normal! It's not working for us!". He completely agreed with me. That was just us feeling completely defeated though and just a few days later we were blessed by a nice time in White Rock. 

It was the last day of Jason's holidays and we were on the fence about going to White Rock. Should we drive all the way there for a potentially terrible time? The amount of public melt downs and stares from strangers that we've dealt with over the last couple of weeks made us want to stay home. We decided to make our decision based on the tide. If it was going to be low tide when we wanted to be there, than we would give it a go. We checked out the tide chart and it was predicted to be at its lowest exactly when we wanted to get there so we went for it. The nice thing about going at low tide is that there is so much space on the sand that we can set up far away from other people and not worry about their reactions to Landon's strange behaviour. (You'd think by now it wouldn't bother us what people think of him but there's only so many times water can roll off a ducks back before the duck is surrounded by said water.) Landon knew right away that this wasn't the same beach that he was expecting so as soon as we got there we set up Landon's chair and gave him some ripple chips (his favorite) to help him feel safe and relaxed in this new place. He sat under a towel chomping away for about 30 minutes before he decided to check out his surroundings. He took one step off the chair and quickly sat back down. Which I didn't mind as it gave Jason and I a chance to eat our fish and chips at the same time! 

We thought he would love splashing around in the shallow water but he did not love the feeling of the mushy sand. He got pretty upset and wanted to be up in our arms and not on the gross feeling ground. Jason and I looked at each other knowing that this could be the end of our time there if we didn't get this figured out fast. I set him down on the hard sand away from the water and started to make splashing noises with his bucket. We over enthusiastically laughed and cheered at the sound of the splashing, trying to encourage him to enjoy the water despite the mushiness. He slowly made his way into the "puddle" and enjoyed it for a little while. He then requested his chair and sat/played on it for the rest of our time there.

Adrianah had a blast collecting shells and protecting her new crab friend, Crabby, from the seagulls. Jason had a nap on the blanket (his favorite activity) and I enjoyed walking through the tide pools looking for sea life. We had a really nice time on the beach. 

phone pic

                            

What made this day particularly great was the end of it. Normally we leave somewhere because Landon is having a melt down and we want to flee the scene so we are very happy when we get to leave on a high note. We packed up our stuff as the tide was coming in and we went for ice cream. We don't take him into restaurants because, well it just almost always goes terribly wrong. One of us inhales their food while the other sits in the car with Landon and then we switch. We're drive thru people now. Anyway we took our chances and took him into the ice cream parlour/bakery. I was amazed as Landon was happily standing in line with us. I'm watching him closely, wondering what he's going to do next, and after he takes a sniff of the place, he asks for a cookie! Sure thing buddy, you're definitely getting a cookie! Jason and I are both smiling as we make our way through the line up and order our cones without one of us having to take him outside. Jason is feeling brave at this point and suggests we go take a seat by the window. I shoot down the idea right away because I was afraid of messing with a good thing but then Jason spotted it....there, by the window, with a ray of light shining down from the heavens, was a stand up air conditioner right beside 4 comfy chairs. We both laugh and take Landy over there. Now, if you know Landon, you know that he LOVES a good air conditioner. He wants ours on all year long and he can hear one a mile away. We sat him down beside it and he immediately forgets about his cookie and happily says "I hear the air cishoner!". Jason and I continued to smile as we enjoyed our ice cream as a family. It was the perfect end to our day and his holidays. 

phone pic

phone pic

And that's why we will continue to step out of our comfort zone and pursue normalcy as a family, because the little successes feel like gold medals to us. 

Going away

Last weekend Jason and I went away to celebrate our 10th wedding anniversary. It was an incredible four days away and we felt blessed beyond words. 

I was a wreck for the few days before going though because I was so worried about leaving Landon. I wasn't worried about Adrianah because she knew exactly why we were going and she understood that we would be back in a few days. The communication barrier between us and Landon is definitely getting smaller but it is still very difficult to explain situations to him. I was worried sick (literally, I felt like barfing) at the thought of him not knowing why I wasn't coming home. People kept asking me if I was excited to go away and I couldn't say yes. I was more concerned about him than I was excited for the break and time with my husband. For years Jason and I talked about going to Jamaica or somewhere tropical for our tenth, but when it came down to it-I didn't want to leave for longer than 3 nights. We've only ever been away from the kids for two nights together. Jason has gone away many times on work trips so the kids are used to him being away sometimes, but I rarely go away overnight. I wasn't worried that the kids wouldn't be taken care of while I was away, we were leaving them with family that love them very much and that our kids love in return. I knew they would be in good hands but I couldn't shake the feeling that I didn't want to leave. The day before we left I was thinking about how other parents can leave their kids for a week every year and I was freaking out over a measly 4 days! What was my problem?! Then I figured it out. I was placing my own abandonment issues onto Landon and the thought of him feeling like I was abandoning him made me bawl my eyes out. So I prayed about it, because that's all I could do. Oh and I wrote out an excessively long list for the babysitters.

 We had asked our family (thank you, thank you family!) to each take a day/night at our place to make it easier on Landy. I wanted them to all be on the same page when communicating to him when we would be back. He does well with the 'First-Then' strategy so I knew he would best understand if everyone told him- "First Grandma Holly on Thursday, then Auntie Anne and Uncle Canaan on Friday, then Grandma Patsy on Saturday, then Mommy and Daddy come home on Sunday". He's good at remembering what comes next so he was expecting the babysitter shift change each day.  

When it came time for us to leave my mom was doing her best to ease my mind and Jason was being patient with me as I nervously ran around the house making sure everything was in order. I hugged and kissed Landy goodbye (Adrianah was at school) and we drove away. I cried for about 10 minutes but Jason prayed I would have peace and from that moment on I was able to relax and trust that they would be fine. 

I was mostly concerned about the mornings and was hoping that Landon wouldn't wake up too early and that he wouldn't get upset when it wasn't Mommy or Daddy's voice that would say good morning. On our first morning Jason and I slept in until 10:15 which hasn't been done in years! My mom called shortly after we woke up to tell us about the amazing morning they were having. Landon got up at 7:30! Even Adrianah knew how much of a miracle that was because when Landon happily greeted the two of them she said to my mom "That must have been God!". Hearing that really put my mind at ease and Jason and I had an amazing time together. 

We explored Botanical Beach and were amazed at the sea life that were in the potholes. We enjoyed an awesome lunch at a middle of nowhere restaurant and just had fun doing things we never do. In the evening we got all dressed up, met up with a local photographer and did an unofficial vow renewal on the beach. It was sunny all day but the clouds rolled in and we had stormy weather during our entire photo shoot. At first I was disappointed that we wouldn't have the sunset but the stormy scene was absolutely perfect for us. We stood there in the (cold) wind with crashing waves and grey skies and shared our hearts with one another. It was so appropriate for us because if I were to sum up the last decade in weather terms, I would say it was thunder showers with a few sunny breaks. We were both nervous about having our pictures taken (because we are awkward) and to have someone there while we read our letters to each other but it was the highlight of our weekend. These 10 years have not been easy and there were times we weren't sure we would make it. I feel blessed that we are still able to look at each other in the middle of a storm and feel more love now than ever before. We know it's not going to be blue skies from here on out but with God's help I look forward to celebrating in another 10 years. Maybe by then I'll be able to go away for 5 nights. 

Oceans- Hillsong United

Don't wake me up before you go go

I am not a morning person. At all. I have always struggled with getting out of bed in the morning, unlike my husband who gets up at 4:15 to drive for over an hour to work. He puts me to shame. He's a superhero and his superpower is getting up early. If I wake up when his alarm goes off I usually thank Jesus that it's not for me.

Landon is trying to turn me into a morning person.

It's a good thing he's cute

It is very common for blind children to not sleep through the night. It is hard for their body to know that it is night time without the visual cue. It isn't unusual for a blind person to take Melatonin to create a sleep schedule. Melatonin isn't ideal though as it doesn't last through the entire night so staying asleep until morning is an issue because if they wake up in the night and don't see that it is dark out they can think it's time to get up. I imagine that a visually impaired child that does not have autism could be told that it's still night time and could probably fall back asleep. Not the case with Landon. You see it is also very common for children with autism to have trouble sleeping at night. With their never ending supply of energy it can be a struggle, to say the least. So as you can probably imagine, Landon's night time routine is not the greatest.

If Landon is asleep by 9 we think of it as a success. There have been numerous times that we have gone to bed listening to him jumping around in his room. I can usually stay awake until I know for sure that he is asleep but there have been times I just couldn't keep my eyes open anymore and so I fall asleep praying that he doesn't escape and leave the house (we have locks up high on our doors now so that's not a real concern anymore).

Once he is asleep we never know when he will wake up. Every night is different. It is not uncommon for us to hear him singing or playing with a toy at 2am. I don't mind those nights because he almost always falls back asleep. Every night/early morning when I hear him open his door I cringe and look at the clock. Normally, his wake up time is somewhere between 5:30 and 6:30. I count myself as lucky if the clock says 6:30 instead of 5:30. Every night I wishfully set my alarm for 7am in hopes that he won't wake me up before then. It does happen on occasion and I love those days. Unfortunately though, as often as he sleeps until 7am, he will throw in a 4:30 wake up. Not my favorite.

I'm sure some of you are thinking, "What's the big deal? My kids do that too".  Well here's where I think it differs.

 When I hear him come out of his room and I go to see him, I will approach him with an extra soft voice to test out his mood because I never know if he will be happy to hear my voice or scream at the sound of it. I'm always so relieved when he says "hi mommy". Some days he wants me and some days he wants daddy. Some days he's happy to go back to his room with some milk and a toy and other days he wants to go jump on the trampoline before the sun comes up. Hearing me say "Sorry, Buddy, it's too early" is not his favorite thing. He just does not understand why I won't fill water balloons for him or why he can't play on the piano at 5am. I try and keep him quiet and am sure everyone in this tiny sleeping town can hear him screaming at me. I've learnt that the less I say, the better. Sometimes I'll just sit beside him on his bedroom floor silently waiting until I think he is ready for me to speak. I'll quietly offer him something and he'll either accept it or start screaming and hitting me again. Most of the time I don't take it personally and continue to try and help him but once in a while I will just sit there on his floor and cry. Like I said before, I'm not at my best in the morning. 

Landon's sleeping has been especially out of whack lately. We're not quite sure what is going on with him right now but it seems to also be affecting his day time. He's napping on the couch beside me right now as I write this. I know that this nap will only make bedtime more difficult tonight but I'm just letting him sleep this one out. He was having a rough day so far so he must need it. Plus he's just too cute when he's sleeping. 

Cute, right?

Anyway, this is an area that I wanted to share because it's another part of this autism package that people don't see. It's why I have big bags under my eyes and it's why I yawn like crazy when I'm out past 9. It's the reason I pray, a lot, in the wee hours of the morning and it's the reason I listen to songs like the one below. So if I yawn in your face during a conversation, please don't be offended, I just need a nap. 

Cast My Cares- Tim Timmons

Waterfall

I've sat down to write a couple of times since the last post but it was after a long difficult day with Landon and I just couldn't bring myself to publish the debbie downer post that I had written. I'm sure I'll share one like that sooner than later but for now we'll keep it on the light side.

We had a busy Easter weekend as I'm sure most of you had as well. Jason and I were so pleased that we had two successful outings with Landon. We went to an Easter Egg hunt at a corn maze/farm and took him to Bridal Falls. There was a little bit of yelling when we first got to the corn maze but thankfully there was a swing set and a huge bouncy pillow that he absolutely loved! We knew he wouldn't care about the egg hunt or the bag of treats but were hopeful that he would be happy with the other things there. He happily jumped for close to an hour with daddy while I took Adrianah on the egg hunt. We might just have to turn our yard into a big bouncy pillow!

Taking him to Bridal Falls was a much bigger deal than the farm though. Anytime we had ever thought about going there we quickly laughed at the idea. With Landon's love of water and loud noises we have always opted out of taking him near a waterfall or down to a river. Obviously. He asks for the bath/pool/water balloons/hose etc every day and a waterfall would blow his mind! We imagined that he would not be satisfied to just hear it from afar and it would become a battle of keeping him away. It wasn't something that we wanted to try because if he gets upset up at the waterfall, it would be a long hike down to the car with a flailing child. I guess we were both feeling brave that day and figured even if it goes poorly we will have a story to tell about the one time we took Landon to the mother of all water sources.

Landon doesn't really know what a waterfall is but when we told him we were going to a waterfall he was intrigued. Maybe it was our overly excited voices that convinced him he would like it. He did very well walking up the trail to the falls. I think it helped that he could hear the water from the parking lot. Jason took him to the stream and he was enjoying sticking his hands in the water even though he occasionally asked us to make the water warm for him.

 Jason was feeling much braver than me at this point and decided they could make the final hike up the steep rocky hill to the top where the waterfall was. I nervously followed behind them and took pictures as I tried not to fall on my own. It was so awesome to see them sitting at the base of the falls while Landon leaned down to touch the water. It made the stressful moments so worth it. At the time, I probably would have said otherwise as I watched Jason climb back down the mountain with Landon on his shoulders. I think Jason had to completely tune me out as I was 10 feet behind him yelling..."Jason...Jason...stop...Jason...wait for me....Jason...This is crazy....Jason.....Be careful!". I was freaking out. Just ask my sister in law.

I really like this photo of the two of them in front of the waterfall. It makes me feel happy that he was able to get so close and experience the power of it but at the same time I feel sad about the fact that he can't see the beauty of what's behind him. I like to think that the sound of it falling is just as impressive to him as it is for us to see it. Anyway, I think we'll definitely be going back, maybe not right up to the top, but we'll go back.

Big Sister

Adrianah was a baby when she became a big sister. At 16 months old she had a hard time understanding why I was in the hospital for a few days with another baby. She was ticked right off and completely ignored me when I came home with Landon. I think she felt betrayed. Little did we know it was just the start of her having to put her needs aside for her brother.

People must think we have twins when we are out with the two of them. Landon is taking after his 6'7 daddy and has been the same height as Adrianah for well over a year. Adrianah often asks me if people think they are twins because she loves the idea of people thinking she has a twin. Even though he is just as tall and much heavier, she still treats him like a little brother and doesn't mind doing things for him or giving him a horsey ride. I know she wishes she had a sibling that she could play with more often. Landon usually likes to do his own thing but when he does want to be around her, it's all on his terms. I absolutely love seeing them have fun together.

It's not easy being his big sister, but she rarely complains, because she loves him very much. I often feel sad for her when I think of all that she has to deal with at just 6 years old. Sometimes when Landon is upset he will specifically want to be with or hear Adrianah's voice. She usually is happy to be there for him but sometimes his demands are just too much for her as well. She's learnt to accept that in order to keep a meltdown at bay she also has to sacrifice some things. There have been too many times to count where she has had to leave a fun event early or miss out on one all together, turn her music/tv show off because he can't stand the sound, or simply play by herself, again, because Landon's needs are taking up all of my time. He yells at her and hits her when he's upset and often during a car ride she's huddled against the car door on her side so that he won't be able to reach her when he's swinging his arms and legs her way. I'm constantly apologizing to her on his behalf and she's always very forgiving. I sometimes worry about how this will affect her but I believe that it is creating strong character in her. I can see it already.

There are things that Jason and I like to do with her to make up for all that she misses out on. When we can, we like to take her on little dates and even if it's just Jason and her walking to the library, she feels special. Going to the movies is obviously something that we don't get to enjoy with Landon so it's something we can do just for her. Last spring we made the bold decision to take the kids to Disneyland. We knew that it could potentially be a disaster for Landon but we were willing to take the risk because it would be something that Adrianah would always remember. Thankfully, with help from Grandma, it went fairly well over all. We planned the trip around Adrianah's birthday and I was so happy for her because she still refers to it as the best day ever. Even though she will one day think back on her childhood as having its difficulties, I hope she is able to remember moments of feeling special in the midst of a family life that revolved around her little brother.

I feel so blessed when I think about her and her huge heart. She is very compassionate and understanding. I'm so proud of who she is already. She's the perfect sister for Landon.

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