Lonely

Raising special needs children can be a lonely business.
My immediate family and friends are amazingly supportive and do their best to understand. But sometimes when you need to talk about really heavy stuff or just really gross stuff that autistic kids do it's hard to relate to people who don't live it.
Lots of times people will say "oh all kids do that". It is technically true in some cases and I completely understand the intent with telling a special needs parent something along those lines. People really want to make you feel better and they say it so you can feel like your kid is doing something a neurotypical kid does. 
The difference in an autistic child is that they may do that specific thing fifty times in an hour or have a really hard time transitioning or in the worst case scenario have a meltdown that becomes out of control. You see, the actual thing by itself isn't always terrible, it's just that this behavior is exacerbating a parents very deep feelings of stress. Depending on the day, the behavior can make you sad or mad, embarrassed or just hopeless. It can be the proverbial straw that broke the camels back. 
So when a person says all kids do that particular thing it basically shuts down any helpful conversation and downplays the serious emotions that accompany these situations. 
And I get it, it's hard to know what to say sometimes. It's just an example to illustrate how hard it can be to relate. It's really a sticky situation on both sides because no one wants to offend and I myself don't want to be overly sensitive. Knowing that people are usually good at heart and doing their hardest to be kind is understood. It's just the reality of our situation and it gets murky. 
My best friend has always been easy to talk to about the tough stuff. 
Late last year she moved out of state and left me missing my coffee buddy. She spent a lot of time with us and the boys and totally got it. Since she was a nurse it was ok to talk about scary or gross stuff because honestly, nursing can be both a lot of times. When she left a lot of emotional support left, support that you can't quite replicate over the phone. Over time I've started branching out a little in talking to other autism moms, doing a moms night out and having coffee with a few that live in my town. These women have been a lifeline of sorts, they deal with the same school districts, the same doctors and school psychologists and IEP teams. The insight, support and ideas are really invaluable. 
We also joined a special needs soccer team that E-man participates in on the weekends. Having activities in our community with "our people" is great, seeing kids and families of all abilities is in it's own way validating our lives and experiences. We really aren't alone.
The online autism community has also been helpful these past few months. In the same way that soccer validates my feelings, a mom on twitter getting excited that her kid read aloud or another mom who is lamenting a tough day makes me feel less alone and less ashamed that I get mad, sad, angry or frustrated with my kids. 
My friend leaving ended up opening me up to people and experiences I may have missed out on if she hadn't left me for the Big Apple.
It's a true blessing in disguise (and now I have a really good excuse to visit New York!).
It looks like my world is becoming a little less lonely and starting to feel a tiny bit bigger. 

The Boys

E-man and Little Buddy have been a handful lately. LB has graduated to this stage where he wants to throw everything. He especially loves forks, he'll gather up a few from the drawer when I am not looking and while running throw them up in the air to watch them fall. One night he was doing that and E-man found some tent poles he was running around with and I was worried Martin would come home to find me impaled to the wall. 
When the kids develop this off beat pattern with an object my job is to figure out a way we can make it a game or somehow direct the pattern of play into something that might happen in real life. Stuff like play eating with the forks, having a doll use the forks or anything really that won't injure him or anyone else is preferable. LB is having none of it, so when I take the forks away it's on to a new object to throw and the whole cycle begins again. It can be a real struggle to try to figure out what to do with these items to redirect his attention away from throwing them. 
On top of that LB has had some eye issues the past couple of months when he started crossing his right eye in. After taking him to two specialists the conclusion that was drawn is that his eye sight is fine but he needs to wear a patch on his left (good) eye to help strengthen his weaker eye. Thankfully it's only for 2-3 hours a day, but man that 2 hours (the most we've been able to get him to keep it on) is that longest evvveeeeeeeerrrrrrrr. However his tolerance of it is getting better, but I can't leave him alone with it. 
On the other hand, E-man is doing pretty well and has been fairly happy lately. The challenging thing that has come up with him is actually at preschool. While there he has an IA (instructional assistant), two times in the past month when the IA used the restroom E-man has tried to elope from the classroom. Thankfully he never made it much past the outside of the door (which opens up into a gated playground). At his last IEP meeting I let the team know I wanted to be notified of this behavior and I want it documented each time. After that meeting is when these two times occurred and it makes me wonder if they happened previously and I was just not told. I feel like I am learning a big lesson here. Things may go on that I will never find out about and if it is something I need or want to know I have to not shy away from making these needs known in the future. At that last IEP we discussed how E-man's strengths tend to be in the cognitive realm, which can be a double edged sword. He is smart, which obviously is good but it can make it tough to get him to ask or engage you in some way if he can figure out how to get what he wants on his own. With him I feel like I need to be two steps ahead in any situation. 
They are handfuls now but I am learning ways to help me deal with the stress and one big one is exercising. I know, I know, it's annoying to hear but it is very true. I didn't really realize the impact it had on my ability to cope until I was majorly slacking off and suddenly everyone seemed unbearably annoying. It was a good realizations and I have come to a few new conclusions about my health and well being I want to detail in another post. So until then I am doing burpees for my sanity.

Christmas

Christmas crept up on us this year, I picked up a bunch of lactation hours for December and the hubby was extra busy at work too. By the time Christmas rolled around I wasn't really excited about it. So what do you do to get in the holiday spirit? Get a tree, decorate it while cooking something delicious (beef soup that night) and listen to holiday music. 
That did the trick and the boys loved the tree, E-man helped test the lights and hang ornaments. Little Buddy ran around excitedly, inspecting ornaments but he lost interest pretty quickly. 
Christmas is a little strange for us because there is no way to know what the boys understand. For example, Santa might just be a big red dude who shows up at parties for them. E-man loves him though, his preschool teacher sent me pictures of him sitting on his lap all excited. LB hasn't shown much interest but it was the same with E-man a few years ago. I don't think we will go out of our way to sell the whole Santa idea anyway. For two kids who can be quite literal convincing them that Santa is real then later having to explain that he's not and that they can't tell other kids seems like it would just be confusing. So we will just enjoy the jolly man who likes to party.
We also did gifts a little differently this year. Instead of wrapping up everything we set it all up so that when they walked out of their rooms the living room had a bunch of cool stuff in it. To them a wrapped box doesn't mean much and neither of the boys find much excitement in unwrapping a gift. After setting it all up I videotaped them waking up and walking in the living room, it was adorable.
In addition to our Christmas at home there were three holiday gatherings we attended this year. Lots of effort was made by grandparents to E-man proof their houses. It was sooooo very much appreciated. It's always a lot of work to go to any get together with the kids but the extra security measures made it easier and more enjoyable to just hang out. 
The holidays seemed to be a hit this year and I really enjoyed the time off Martin and I had together. I'm hoping to keep up my blogging a little more in the future, thanks for sticking around and reading about our little family. Hope all of you have a wonderful 2014.

Escape

A few nights ago we were hanging out after dinner with the kids. 
I went to use the restroom, Little Buddy got upset that I left and started crying. Martin was consoling him in the hallway when E-man quietly slipped out the front door and into the night.
I came out into the hallway and took LB, Martin went to the back of the house. I noticed I couldn't hear E-man at all. I scanned all the rooms and couldn't find him. Starting to get nervous I went back to the front room and noticed the front door open the tiniest bit.
My heart dropped, running for the door I opened it, he wasn't on the porch. I screamed his name.
I stepped back in the house yelled for Martin and not waiting for a response I left LB by himself in the living room and sprinted outside. My first thought was the park near our house, he knows the general direction and that was the most likely place he would go. I ran into the front yard and onto the sidewalk, in my peripheral vision I saw a blur of orange, I turned and there he was. E-man in his red Avengers t-shirt, dark blue pants, barefoot in the middle of the street a few houses down. It was almost like he had a spotlight on him from the street lamp nearby. He was laughing and looking at his shadow on the ground. I called for him and he looked up, smiling. I ran for him, as I ran to get him he started running towards me. I scooped him up whispering his name and thanking God he was ok. I carried him all the way home.
When I got in the door LB was crying, Martin was still in the back of the house. Shaking, I told him what had happened. 
The whole rest of the night I couldn't take my eyes off E-man, I kept hugging and kissing him. Trying to explain to him that he had to stay home where it was safe. He would smile at me, hugging me back. After both kids went to bed I had a complete meltdown. It felt as if the old wound was ripped open again. It feels like we get to a certain point with them and something new happens that kicks us to the ground. I felt helpless and alone.  I think I felt even worse about it because I have been keeping up with the news story of the 13 year old autistic boy in New York who walked out of school and has not been found for going on 7 weeks now. For some reason this story has haunted me. So when E-man slipped out fear enveloped me even after he was safe at home. That night I had to keep reminding myself that he was ok, sleeping peacefully in his bed. The what-ifs were plaguing my mind. What if he had gotten farther, what if a car hit him, what if he had drowned, what if he had been taken by someone? I couldn't stop the negative thoughts. It bubbled up and I just cried and cried, Martin holding and comforting me. I was so tired, I AM so tired of worrying.  
I guess the good news is that over the years enough scar tissue has built up that when something reminds us yet again in a big way that our lives are different, the recovery time is faster. Let yourself feel bad for a little while, pick yourself up and start troubleshooting. I realized after the commotion that I had forgotten to lock the front door when I got home with the kids that afternoon, so when E-man tried the door he was able to get out. Since LB was having a meltdown, Martin couldn't hear him leave and was obviously occupied. This led us to ordering some door alarms, so now we have the welcoming sounds of a convenience store. Whatever works, right?
Doing some research I found a really great website that provides a tool kit for help in preventing an autistic child from wandering and what to do if an event like that occurs. It feels better to have some information handy, and it discussed figuring out why your child might wander. Some children are fascinated by water or street signs and go looking for them. E-man loves parks and he hates to hear LB crying, so put that together with an unlocked door and he's off. 
In total he was gone for maybe 5 minutes, it could have been much worse. I have to keep telling myself that now at least we can work on prevention and vigilance. To use it as a lesson and build a plan that is tailored to keeping him safe. But the worry is there, it will always be there.  

Hodge Podge

It has been decided E-man will take a bus from his preschool class to therapy three times a week.
Oh lord help me.
I have never really wanted either of the boys to take the bus. Since they do not really answer questions I can't ask them how the ride went or you know, "did the bus driver seem drunk?" type of questions. Although my mother in law pointed out that E-man can't tell us what is happening at school either, so that line of thinking really is not very logical. For me worrying usually wins over logic (I am working on it though).
When we started preschool last year I was available to do all the driving. It was pretty simple because Little Buddy had therapy in home and preschool wasn't that far from our house. This year everybody is in a different town at different times of day. Preschool days I spend just over three hours in the car going back and forth. 
To make it more complicated I started training to be a lactation consultant and in order to be certified you have to do so many hours of breast feeding education. Obviously when I'm driving all over town, getting training hours can be difficult. 
Deciding that E-man would take the bus was really tough. I feel like I'm having to decide between what is good for my kids and what is good for my career. 
To be honest it sucks.
I feel selfish about the decision. But at the same time I am pursuing a career opportunity that I am excited about and feel that I would be good at doing. There has to be a better balance between my mommy self and myself as an individual. Part of that will have to be accepting help where available and hoping E-man transitions well. 
I did my homework on this option as well, I spoke to a few moms and the staff at the therapy school about the bus and got a lot of positive feedback. So that is where we are at as of right now, I turned in the paper work so in about two weeks he will start riding the bus. So I will have plenty of time to continue doubting myself.
In other news, I had a meeting with the staff at the therapy school and the subject of kindergarten came up. At this point E-man is minimally verbal, which for him means he uses words but they are almost always prompted. That will have an effect on what kind of placement will be available to him next year. The options as I understand them are 1) Regular Kindergarten placement most likely with an aide 2) Special Day Program 3) Homeschooling Program with a mix of therapy during the week. Our goal for E-man is to get him ready for option 1, which will include a serious push for more language from him. It can be hard though when it feels like the harder you push the more he resists. I really would rather he not go to a special day program, I have heard a lot of not so great things about them and I am not sure it would be appropriate for his needs. I can't completely rule it out until I have gone in to see it for myself, so that is the plan once the school district allows us to do that. Option 3 is interesting to me but I have to learn a little more about the programs in our area and how that would work for E-man and our schedule. So it's kind of a lot to process at the moment. Little Buddy is still chugging along doing therapy, no big changes in placement or IEP meetings to worry about until he turns 4 years old. We are also juggling the ever changing laws on what insurance covers, the state covers and the school district covers therapy-wise. Right now the state is covering co-pays  which for each kid is $30, so $60 total per day. It's a long story but we will be paying our co-pays starting next year, it's just an extra headache figuring out what exactly each entity is doing or planning on doing, especially when they are not always clear on it themselves! 
Anyway, that's our lives right now. It feels like a lot of juggling when you throw in trying to keep up on house chores and working out regularly. Honestly, there have been many days in the past few weeks I feel like I am barely keeping my head above water.  So that is the reason for my hodge podge post today, I needed to get it out of my head. Blogging is almost like having a pensieve, though not as cool. Yes I just made a Harry Potter reference. You're welcome.

The Movies

A few weekends ago we took the boys out to their first movie at a movie theater. It was a sensory friendly showing of Monsters University, meaning they turned up the lights a little and turned down the sound. Kids who needed to move around were allowed to do that, parents trailing after them. Nobody got upset when a kid cried or yelled out, when E-man got antsy towards the end and groaned rather loudly, other parents just smiled. 
There was a group there together with several autistic kids, the coordinator of the group helping the other parents and talking with the staff at the theater. She passed a Mom who was following her son on the stairs, the Mom apologized that her son was in the way. The coordinator told her, 
"There are no sorries here".
I overheard this and smiled. 
Another Mom was walking around with her son who looked to be around 5 years old. He scooted into our aisle in front of me, I greeted him and he looked back with a little glimmer in his eye. His Mom and I started to chat. She confided he was nonverbal and his comprehension wasn't that great, to which I replied,
"I know how you feel".
"Thank you", she said, turning to catch her son.
The boys had so much fun, they wiggled around a little and ate a ton of snacks. It was such a thrill to watch their little faces light up with excitement.
You know what I felt in that theater?
Love.
I felt the love of all those parents and grandparents and friends who were there to have their child experience something many of us take for granted. A simple morning at the movies. 
I felt the tools we use everyday to help guide and mold the boys come to fruition. My pride for E-man and Little Buddy swelled so much I felt I might burst. 
It seemed fitting that the movie we picked (spoiler alert!) was about a character that everyone underestimated, but ultimately went a different path and was successful.
It made me so happy to be there, I welled up a couple times.
Here was a place for my boys to be exactly who they are, no explanation, no stares, no pity. Just acceptance. A year ago this kind of family outing was just a dream, something we would get to eventually. And here was the day, we made it. And it felt good.
I think about all the dreams I have for my boys, things far off in the future. Will they get there? Will they have the same dreams? 
I wanted to clarify my last blog entry. In that post I oversimplified how to be happy.  I don't suffer from chronic depression, so saying being happy is as easy as deciding to be sounds naive. I realize its not that easy, there are days I'm so overwhelmed I don't feel like looking for happiness. But I try my best most days, looking for bright things to at least dull the worry of being a special needs parent. 
That day at the movies gave me hope. 
Hope that when the boys decide what it is they want to do in life they will work hard and achieve it. I also hope they know Martin and I will do anything for them, support, guide, push, love, dream for them. These boys are my heart, I didn't think it could get bigger. What I'm learning is that as they grow and change my heart does too, right along with them.

Time Frames

A few days ago was the third anniversary of when E-man was diagnosed with autism. Two weeks before that was Little Buddy's third birthday. Three years ago we were overwhelmed. A second baby and autism! I look back now and realize how far we've come physically, emotionally, mentally and spiritually. 
Autism was the catalyst for us to get healthy, invest in our marriage even more deeply and rely on loved ones more than we had ever before.
Martin and I are going to be celebrating eight years of marriage soon. Eight years ago I couldn't have guessed we would be here, so far from where we grew up and raising two special needs children.
Of course there were and will continue to be bumps in the road. What has helped me immensely is deciding to throw out the mental timetable I had for certain things.
Hoping the boys would talk by the time they were a certain age, be fully potty trained by a certain date all puts added pressure on an already stressful situation. With three years under my belt, I now know we can have goals to work on but setting them in time frames that may be unrealistic is unfair to both us and our children. Don't get me wrong, they have both made tremendous progress with the help of therapy. My focus now is that we are consistent in working on goals so they will happen eventually, without  so much stressing on the "when". 

Throwing out the time frame also addresses the "I'll be happy when" syndrome. The "I'll  be happy when I weigh X", "I'll be happy when I make X amount of money", "I'll be happy when the Sharks finally win the Stanley Cup" type of thing. I've realized I'd rather be happy, grateful and amazed at my life now. 
Having goals is great, but at the expense of not being happy until they are accomplished? Not so great. 
So our little family will just keep plugging away at our goals, happy, proud and thankful for each other.
Why wait?