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?

Mother's Day

I don't think I truly appreciated my Mom until I had my kids. It didn't kick in right away because I was so overwhelmed with my newborn. After things calmed down I started to realize all the struggles I was having, my Mom had too. 
What was shocking to me was the love. You expect to love your children, you're told it's a love like no other. When you finally experience it, it is so intense it overtakes you. Realizing that my Mom feels that way about me was like a light bulb going on. 
When I was little I felt like my Mom knew everything, I felt safe, warm and loved with her. She would pack me and my brother a lunch to eat when we played outside. She showed me how to make mud pies with real mud. 
She was everything.
In junior high I was bullied and one day after school I was really upset.
She took me to out to Foster's Freeze to talk about it. I don't remember what we said but I remember feeling better after.
High school was tough, by then I thought I knew it all. We were still close but I was quite sassy and ran my mouth a bit. 
A mother-daughter relationship can be so complex. It was love-hate around that time, it was hard sometimes figuring out how to be together. As I got older I realized I wasn't right all the time. It starting dawning on me that she had good advice and my best interest at heart.
In college I decided to move out with Martin and when I told her she cried. 
She said she would miss me. My first night out of my parent's house Martin was out of town. 
I told my Mom and she came by to chat and brought food. When she left I cried because it turned out I missed her too.
Bringing up my children has shed a light on what she sees when she looks at me, the worrying, caring and frustration she feels for me. I get it now. 
What I want to say is thank you Mom. Thank you for everything, and I mean everything. Every wiped butt, every nose cleaned, every tear dabbed, every hug, every kiss, every talk, every laugh, every fight, every phone call. EVERY SINGLE THING.  I appreciate you and I love you.

Happy Mother's Day! 

As time flies

The month of February has been a little kinder to us than January. I realized the other day that's its been a year now that Little Buddy was diagnosed with autism.

What a year it's been! 

LB has made so many gains with over a year of therapy under his belt. 

The beginning was rough for him and the focus was on him tolerating being with someone other than me for a short period of time. 

It was baby steps at the beginning, it started with just an hour (with me in the room). I slowly faded out and the length of time increased. 

From there they worked on play and social skills and back and forth games. As the hours increase his therapy has become more complex.

Currently he is receiving five hours a day of in home therapy. The afternoon hours were just added a couple weeks ago so that has been an adjustment.

When I think back to a year ago, his progress is amazing. Eye contact has improved, answering to his name, pointing at desired objects with consistency, acknowledging other people a bit more (although he's not too friendly yet) and the most exciting of all is that he is starting to talk! 

Of course his most often used word is "no", he also says "go", "side" (for outside), "Mama", "baby" and "mo" (for more). His verbal imitation is picking up too. 

The language is starting to click for him. With that said, he does get very frustrated when he can't communicate what he wants. 

The other night I had a friend over and he was crying and yelling, obviously upset about something.

I tried every trick, his favorite snacks, a drink, games, books and just holding him. None of it worked. 

As I was trying not to have a breakdown myself my friend pointed out that even though it's hard for him it's probably a good thing that he's understanding that he needs to communicate his needs to me.

It sounds strange but it's true.

When we were very first meeting with the clinical staff of the school we were warned that at some point tantrums might start happening. This is because the kids have made the connection that information has to be communicated to a person but they can lack the language to convey the message. As language picks up the tantrums usually improve. 

So even though I was about ready to rip my own hair out I could see why the meltdown was really a stepping stone towards better communication. 

Thinking about the last year and how quickly it has gone by makes me want to slow things down. I get so caught up thinking about the future, I often forget to appreciate things now. The bigger LB gets the more it hits me that I won't have another two and half year old running around the house again  (on a side note, I told Martin I had a dream that we had a third baby. His response "Ok, ok I'll go get the snippety snip").

So I'm trying to appreciate them because it goes so fast. 

Parents of older kids have told me to enjoy it. When you think about it people are only children for a very small period of time, being mindful and present in their growth  can be a challenge. 

To that end I do want to document their quirks with pictures and descriptions in some kind of album.

I never kept up with their baby books. In all honestly when I couldn't fill out the "milestones" sections with certainty that went out the window. 

For a time I didn't put a lot of thought into it. Lately it feels like I need to record what they are like. LB likes to nuzzle my face with his face. Resting his cheek against my cheek, or pushing his forehead to mine, giggling, sometimes giving me kisses too. He's done this since he was very little. I know one day he won't be so affectionate and I don't want to forget these sweet moments. E-man is very interested in helping in the kitchen, a fact I want to have photographic evidence of for when he's older. After all, these small moments make up our lives. It is becoming apparent to me that there is no way I can remember it all. The best I can do is to take pictures and make notes to pore over when the boys are big and smelly. 

Rough Start

Leading up to the new year we had a lot of different illnesses running around the house. Every week it was some new infectious bug that kept the kids out of school and Martin and I exhausted. That added in with the regular holiday stress we were tired.Shortly after the New Year Martin's Grandma passed away. This was and is very difficult. His Grandma felt like the glue that held his family together through thick and thin. We were devastated. 
There has also been a change in my family that makes me incredibly sad, I can't go into detail because I don't want to air anyone's dirty laundry. Nevertheless it's something I worry about. 
All of these family troubles have made it a rough start for this year.
I worry for people, more than I probably should. I want to fix problems for people that I can't and shouldn't. This is a hard lesson for me and one I'm still trying to learn. 
I've got problems of my own to focus on but I can't help aching for the people I love when they are struggling. It's easy to let it all get overwhelming. I'm really not sure what the point of this post is today. I just needed to get it out of me. I don't have an easy answer for any of it. 
All I have for now is hope that things get brighter, that the people I love will get through the darkness. 
I hope, I hope, I hope.