Expectations

Since the day we found out we were expecting baby #2, we were nervous. Nervous and worried because once you have one child with autism, your chances are higher of having a second. However, we knew that was a possibility and we went for it without looking back. Then we found out baby was a boy, which increased the chances even more since autism is more prevalent in boys than in girls. Yes, we were nervous, and yes, we still are!
We watch Tucker everyday to look for signs and symptoms of delays. There have been times that Jeff and I have been watching Tucker and we will see things that make us wonder if we will be going through similar days that we have with Ledger. We don’t even need to discuss what we’ve seen. We just have to look at each other and it’s easy to figure out what the other one is thinking…uh oh.
However, there are other days that we exchange looks and it is not an uh-oh or here-we-go-again glance. It’s a proud mom and dad exchange. That happened for us today when we watched Tucker toddle across the great room pushing his walker! So far he is doing so awesome meeting the targets that he is supposed to be hitting. For now…however, we know, as autism parents, that delays and regression may set in at a later time.
Raising a second child after a developmentally delayed child, I just kind of expect things to be delayed again. It hasn’t made me any less proud of either one of my boys, it just makes me very aware of every look, movement, noise and curiosity that the boys go through everyday. If I have high expectations and they aren’t met then I feel concerned and disappointed. We’ve learned to live without expectations and simply enjoy the times that we survive through something that would be expected of neuro-typical children. We have hope going into everyday that our boys will surprise us and make us proud, and everyday they certainly do that…both in their own unique ways.

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Carly’s Cafe

Carly’s Cafe

Just recently, we’ve noticed that Ledger has been super sensitive to noise.  We’re trying to figure out whether it is the volume of a noise, or the pitch of the noise.  Sometimes something that you think would bother him doesn’t at all, and then something that really shouldn’t could cause a complete drop-to-the-ground meltdown.  We’re learning through trial and error what some of those things are.  I need to do certain chores when Ledger is at intervention for the morning.  Everyday tasks like making a smoothie in the blender, vacuuming, using the dust buster, or even drying my hair are not easy noises for him to tolerate.  So I choose, for my sanity and his, to do them when he is not in the house.  Some people believe that the more exposure he has to something may help him overcome any difficulties he may be having, and to an extent I would say that I sometimes agree.  But it’s not always that easy either…

I think this video needs to be seen by everyone.  Its purpose is to show the world how Carly, a teen with autism who communicates through typing, views a simple everyday experience like going to a coffee shop.  It is so eye opening and really makes you think about how overwhelming a “simple task” can be to someone who has autism. Click on Carly’s Cafe and take a look… 

Understanding Autism

Check out this short and sweet post…well said Dad, well said!

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Understanding Autism

Looking at my son he plays as any child does, just in a different spectrum of our world. Being a part of his learning and development is the best part of being the parent of an autistic child. None of us are the same, we are all different in many ways. My son does not care what race, color, creed you are. It makes no difference to him what your political views are. He just knows what kindness and love are. God, I wish the rest of us could learn by his example. If we did this world would be so much better off.

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Our Water Warrior

On Sundays, we have Ledger registered for swimming. He loves the water! Maybe it’s because we put him into swimming since he was 6 months old. But lessons haven’t been as much fun as you’d think.
In the beginning, he was in the programs where I would get in with him. He seemed to enjoy this and I did too. Then he was old enough to go into the pool without me. We registered him and thought it might be good for him to be with peers his own age and give him some independence in the water. Well – he had independence alright! He was completely fearless of the water, and didn’t follow any instructions. He would wander off in the pool (sometimes to the deep end) and often just spin and flap in the water. The instructor showed a lot of patience with him and tried to include him in every task. But as she lined up the other swimmers on he edge of the pool to kick their feet, Ledger would quickly hop down and bounce away from the task at hand. Every week we left feeling that he was taking the instructor away from the other swimmers and that maybe we would be better off looking into some private lessons.
So we called to ask about private lessons. We explained our scenario and our reasons for needing the private lessons. We arranged for a 4 week lesson which cost a fortune. We hoped that we would see some improvement with the one on one approach. Not so much. To be honest we were more frustrated with the private lessons than we were with the class. The instructor that they put with Ledger was quite young and told us he didn’t have any experience with autism. Nice of him to tell us and of course we understood why he seemed a bit timid and held back. He was just a kid and completely unsure of how to handle Ledger.
Then we heard about Making Waves…a special program for special people with disabilities. It is run by med students who are looking to gain some experience with children who are differently-abled. We could not be happier to have heard about this program. There is one med student per child and they are beyond patient with the children. For 1/2 hr a week they volunteer to spend time in the water with these special children. It is not a lesson, per say, but exposure to the water. No pressure, no standards, no objectives or targets that the children have to hit. Because of that, it allows the kids just to focus on becoming comfortable in the water. Of course, Ledger was already there. But for the first time this week we saw something we hadn’t seen before. Ledger was fully submersing in the water, and on purpose! He was kicking, waving his arms, and actually trying to swim!
Our little swimmer! Jeff and I couldn’t be more proud. But the best part of all was seeing the pride and joy in Ledger’s face! I mean seriously, how many kids actually smile under water?? I think it’s time to consider that backyard pool babe…💕

A typical day…

So, our day…it can start anywhere between 4:45-6:30. I think it goes without say, that anytime after 6 is an awesome start! Ledger is typically a good sleeper! However, he has a hard time falling back to sleep if he wakes up early, so once he’s up our day begins!! He is getting better at letting me crawl in with him (in an effort to keep him from running wild through the house and waking up his brother) but rarely relaxes enough to actually fall back to sleep.
The rest of the morning is what I would refer to as routine…eating breakfast, getting dressed (we all bath and shower at night in this house because the mornings are too hectic) and preparing for the day. Ledger goes to intervention every morning which we refer to as ‘school’. He has been going for over 2 years now and has no issues going in every morning. It wasn’t always that way though. Trouble with transitions has almost vanished for Ledger. That has been the biggest gain that we can see from school. Two years ago we couldn’t visit anyone or have anyone visit us without Ledger having a meltdown. Now he’ll go pretty much anywhere and enjoys when visitors come to see him.
While Ledger is at school, Tucker and I run around to get errands done or sometimes meet up with friends of cousins for play dates. He is one of 9 babies in my extended family this year 🙂 (how sweet is that?). After running the roads we pick up Ledger and head back home for lunch.
The afternoons can be interesting. We’re never quite sure how things will go. Normally Tucker will take a good nap. Ledger would play downstairs in his swing all day without saying a word to anyone if we let him. But that’s just not an option. We know when he needs some down time, and he gets his fair share, but we also push him to see if we can get him to interact, play, or even talk to us through different activities. The other day for example, ewe built a fort and sang some songs in the fort. If Ledger wants us to do something, he’ll come and grab our hand and try to pull us to what he wants. As great as it is that he wants us with him, we don’t go with him unless he uses his words with the actions. We often have to give him the words like “Let’s go Daddy” or “Com’on Mama” in order for him to speak. He is pretty good with repeating what we say, but it is often just echolalia as opposed to recognizing that speech will get him what he wants. Either way, hearing him say the words is important to us in our house.
Supper time is whole different post. It is hectic, it is loud, it is a nightmare in our house. Talking with other moms I hear this is typically a stressful time no matter who’s kids you’re trying to settle down to feed so I’ll touch non that another day.
Night time is fairly routines, calm and ‘normal’ so to speak. The kids have free play time after supper, then we do baths (when it’s bath night), snacks, jammers, and teeth. I try to get stories in when the night feels right, but depending on activity level, sometimes it’s a battle we choose not to fight. Bed time is generally between 7-8pm, and yes I know that we are very lucky to have this bedtime. Many children with autism have a hard time with sleeping. Thankfully, this is one challenge that we don’t often struggle with.
So that’s our day, in a nutshell. Of course, sometimes our afternoons involve visits with or to grandparents or next door neighbours, which we are always grateful for! To us, that’s our ‘typical-not-so-typical” day!

Date Night

Friday night, Jeff and I had a date night!  It is something that we don’t get to do very often, so when my mom told me (not asked) she was minding the kids on Friday so we could go out, we jumped at the opportunity.  We looked forward to it, and hoped for no snow so Jeff wouldn’t have to work!  

We decided to go out for dinner and a movie.  I went out earlier in the day to buy myself a new top 🙂 and Jeff went out after lunch to get himself a haircut.  When we were dating, almost every Friday night we went out for dinner and it was great “us” time (we left the partying & dancing with friends for Saturday nights!).  When Jeff came home from getting his haircut, it was like a blast from the past…He walked into the house with a beautiful bouquet of red roses, and said “Happy Date Night”!  It was so thoughtful and it made me realize that he was looking forward to our night out just as much as I was!  

The boys were excited and happy to spend some time with their Nana and we were very grateful to spend sometime with each other.  It’s so important, whether you have children with special needs or not, to dedicate time to each other and your relationship…it’s good for the parents – and the kids – and the grandparents too!   

Thank you

Wow. I can’t believe the response I’ve had to the blog! So many great family and friends (and even some strangers!) are offering kind words and support. It’s funny because I got a lot of emails saying “thank you for sharing” but really it should be me thanking you for reading! Like many other ‘autism moms’ we put our stories out there to share with others so that people will start talking, sharing, learning, and ultimately accepting, autism. And with saying that, not every post is about autism per say…but, just like in our lives, autism never does and never will go away, so the experiences that I share will always have autism present, even if I don’t mention it.

For those of you who shed all the tears, you need to toughen up! Lol sheesh! Just know that I am trying to capture the good memories and I’ll know that they are happy and loving tears. I’m blogging so that I can share my memories, feelings, sometimes frustrations, and of course, love for my boys.  Maybe someday they can read these blogs and together we can remember some of the times we’ve shared. 🙂

One of the messages that I received talked about how happy they were that I was sharing our story and how brave I am. Yes, it took a lot to share my blog. I held my breathe as I posted the link on my facebook page, and then I walked away from it all to watch a movie with my husband.  When the movie was over, I started to read some of the thoughtful, and supportive messages that I received from family and friends that we talk to everyday, but also from some of who that we think of lots, but don’t hear from as often.  Some of you said that you had heard about Ledger and think of him often, and we thank you for that.   I can’t imagine our lives without all of our friends and family and amazing support system that we have.  So being brave and sharing the blog…It’s like a personal diary but putting it out there for the world to see.  So why did I do it?  To share with you…our friends, family and anyone else out there who is looking for more information on autism.  I read blogs on how other moms are surviving, so I hope maybe I might be doing that for someone else.

For those of you who are now “followers” – thank you!  It’s great to know that you interested in our story and my boys.

Staying Focused

Have you ever read a quote before that has stuck with you? Maybe it’s something you’ve watched, or even something somebody’s said to you. I’m sure it’s happened to you a time or two.  It has definitely happened with us.  When Ledger was diagnosed we started reading up on how we could help him, help ourselves, and even help others to understand autism.

In theory, helping others to understand is simple. Talk, talk, talk. Talk about the many strengths and challenges and know that no two people with autism are the same.  Unfortunately, some people still have difficulty understanding the disability.  And to be honest, even I have days when I don’t get it!  I’m by no means an expert.  But by sharing our experiences, and reading about the experiences of others, we can help educate ourselves on some of the strategies that could help.

To help Ledger, we remind ourselves often of a phrase we read early after diagnosis. Your child will only stay as calm as you are.  Jeff is much better at this than I am.  He is very laid back and has such a stress free personality.  Me on the other hand…I need to remind myself of this often as I can easily get caught up in the moment – not one of my greatest qualities!

Another article I read was in regards to being stressed and how to lower your anxiety level.  In order to do this, the article suggests to focus on the being rather than on the doing.  I know far to often I get overwhelmed and stressed about what he is/isn’t doing at any given time.  For ex… He’s wasting too much time with Tucker’s baby toys;  I need to sit with him and work on his letters;  He needs to stop repeating his favorite line from Thomas and Friends; or even, did I challenge him enough today to give him even the smallest gain?  Going back to that quote, I’d like to start focusing more on just being with Ledger…even if that is joining ‘his world’.  He doesn’t always want to come into my world and often shuts me out with a breakdown.  So today I went into his world.  Tucker went down for a nap and Ledger and I made a fort under our stairs.  Okay, I made the fort – Ledger tried to tear it down multiple times during construction, but once it was done he loved it!  I put blankets and pillows in there and he let me climb in and cuddle close.  We sang “you are my sunshine” and he filled in the blanks as I left out the missing words.  I smiled and he smiled and we were just us…without doing anything.

Doing things with Ledger is often challenging and exhausting.  Being with Ledger is the feeling that words can’t express…It’s the love, the pride, and the joy, that I always wanted from my expected life.

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Comparison

Aw! Aren’t the things our babies do just so cute? I mean really, they truly are amazing to watch! To see them explore their own curiosity is something that I could never get tired of. Tucker is 8 months already (where the heck is the time going?) and he is getting busier everyday! He has already had his first haircut, he’s crawling and now pulling himself up on low tables. Like any other parent we are very proud and love to see him trying new things everyday.

Today I got an interesting email from babycenter…

Put two parents in a room together and sooner or later they’re bound to start comparing their babies’ accomplishments. This game of one-upmanship (which some doctors call the Baby Olympics) may heat up now because individual children start developing at very different rates. As babies begin tackling more complicated skills such as walking and talking — which can take months or even years to master — they all start developing at their own pace. As long as your baby is making steady progress, you have nothing to worry about. And if anybody suggests otherwise, tell her that Einstein didn’t talk until he was four years old.”

That’s right folks, it happens. The dreaded comparison. As a mother of a child who stopped hitting the milestones, I can tell you that I can’t stand it when people compare babies. With Ledger I used to read all the books and emails coming in and around this stage for Tucker (8 months), Ledger slowly starting to miss the milestones. It’s worrisome but of course , at the bottom of all of those “you’re baby should be babbling, toddling and waving” emails, it always says that all babies develop at different rates so not to worry if he/she just isn’t there yet. But, we, as parents, grandparents, aunts/uncles, still feel the need to compare one child with another.

Like I say, as a parent with a child who missed a lot of his milestones, and is still “not there yet” with some of them, it’s difficult to hear comparisons. I’ve lived through the worrisome, and still worry everyday as to whether or not Tucker will start missing them too. We all want our kids to hit those milestones and of course we want to share how proud we are. Keep in mind though, that if someone is sharing a special moments that their child is experiencing, they want to share that moment for that child. They may ask how your child is making out, and then again maybe they won’t. Don’t compare your child with someone else’s. Instead, take the time to praise every child’s individual gain because we are all proud to share those special moments, even if they are years behind…