Safety Dance

My husband and I are going on a vacation to Las Vegas soon (it's ok to be jealous) and I have been preparing and planning as usual for this trip. Both boys are going to be watched by my mother in law and sister in law plus a teenage niece. So part of my planning involves writing out our typical routine for bed time, nap, meals, just the usual stuff that goes on around here. In my instructions I wrote about "safety". Now these are two women who have raised 6 children between them so I know they can keep a kid alive and well fed. The difference here is keeping a child with autism safe. Kids with autism frequently walk (or run) away from their caregivers, typically to go inspect something they find interesting or just to run like a bat out of hell, because why not? Another layer to this problem is that if they get lost, they typically don't answer to their name and have a difficult time communicating (even more so when non-verbal) that they need help. 
Let me give you an example. Martin and I decided to take E-man and Little Buddy on a walk. We packed them in the stroller, put the dog on a leash and we were on our merry way. 
We came up behind a park by our house, both Martin and I were distracted by the dog because he managed to tangle himself up around the stroller. Meanwhile E-man vaulted himself out of the stroller and ran right into the street, in no less than 8 seconds. While we were distracted with the dog, he saw the park and not knowing that there was a curve in the sidewalk to get there he just went the most direct route he could see and went for it. Martin dropped the dog's leash and ran after E-man and caught him and thankfully there weren't any cars coming. You know that feeling when you've narrowly avoided getting in a huge car accident but the adrenaline is still pumping, your heart and chest actually hurt and all your muscles are tense? Yeah, that's how it felt when that happened. 
So if two of us are with him, are extremely aware and vigilant about keeping this boy safe, and things like this still happen, you can imagine that leaving them with other people is stressful. 
My "safety" section ended up being an entire page of information. I wrote about what to do if they take them to various places and what we do around the house like locking all doors (yeah we aren't trying to creep you out when you visit and we lock the door after you walk in), blocking the side of the house that has a gate to the outside, etc. 
While I was writing all this out I realized how much of my time and energy I take to think about protecting E-man and how this gives me great practice because I'll be doing the same things for LB. 
I've been accused of being paranoid for various things in my life, usually when it involves germs (can't help it I'm a nurse). However I've also been described that way when I started thinking something was amiss in E-man's development. When it turned out my suspicions were true I decided I need to trust myself on how to raise my kids. It can be hard to convey the anxiety and preparation it requires to take the kids anywhere, especially by myself because of the flight risk E-man can be. So what can you do to help if you are hanging with a family who has a kid with autism? If you are making plans it is always easier for us to hang out at our house and we can enjoy your company much better, and we are very grateful for accommodating us. If we are out at a social gathering, offering to run around with (basically follow) E-man, it can be a nice break. Friends and family have been really supportive and we've had many successful gatherings. 
It may take a little more work, but I'm determined to keep doing things I enjoy. So I have to let go a little and trust the people around me to take the reins when a break is needed.  It's definitely a work in progress but you know what? I'm still packing my bags for Vegas!

The Unknown

Little Buddy and I are nearing our last appointment with the Infant Start study at the MIND Institute. This is the study that does parent training for children at risk for autism. I feel like it was a positive experience for both of us and has helped LB increase his ability to use body language and verbal skills to communicate. When we first started I was hoping it would be some kind of magic bullet that would prevent him from developing full blown autism. That was probably naive of me, but honestly I was desperate. In hind sight I think it probably helped him not regress further, which by itself makes doing the study worth it. I am relieved to be done, driving a total of 2 hours and 40 minutes for a 1 hour appointment every Tuesday was beginning to take a toll. The timing of everything is actually working out well, he got his official diagnosis a few weeks ago, thus making him eligible for more therapy hours at home. The extra hours will start pretty much right after we are done with the Infant Start study. 
Having done this process once before with E-man makes this time around a little easier. We were completely expecting the diagnosis and were able to bounce back much faster than the first time. 
The most difficult challenge is the unknown. I suspect it's the same for all parents. Will they be happy? Will they be successful? Will they eventually be ok with out us? 
Right now there is an added layer of stress because of layoffs coming at my husband's job and uncertainty with my schedule for work due to some staff changes that were very unexpected. I know we will be fine, it's the not knowing that kills me. In any situation, the anticipation of a problem or change is excruciating for me. I've always been a planner, have had back up plans for potential problems that may arise in any given situation. 
I think this time in my life is really testing my ability to cope with the unforeseen. It's definitely most stressful regarding the kids. 
Will they be able to have conversations, make friends, poop in the dang toilet?! It's overwhelming at times and I get tired. I am hoping over time my ability to cope with the unknown grows. Until then, I'll be taking it day by day, week by week. 

Keep it up!

The past few weeks have been busy for us with the normal routine plus a stomach bug and the never ending cold mixed in. A few weeks ago
E-man's school gave us some homework to do with him and while this adds to the chaos I'm still glad to do it. It gives me a chance to see how E-man is doing and figure out how to use his strengths to provide more learning opportunities throughout the day.
The assignments include stuff like matching objects (2D and 3D), practicing making different vowel and consonant sounds, fine motor exercises, throwing a ball back and forth and my favorite, turning on music and dancing! 
To make sure that we are running the assignments correctly we video taped ourselves and sent it to his clinical supervisor at the school.
Along with that video we sent an additional video of regular play time where we were bouncing E-man on a big exercise ball and stopping and having him request more "bounces". It was actually really exciting because he was saying "buh" for more bounces and had eye contact while requesting it!
The response from the school was so great. They noted that we ran the drill perfectly and E-man did a great job following direction.
They were especially excited about the bouncy ball video, requesting that they have permission to show it at conferences! 
A huge gain for him has been putting his socks and shoes on by himself. I try to help him as little as possible and he's getting better and better. 
The fact that he's been saying mama with purpose towards me and often are my personal favorites of his recent gains. He's also been attempting to imitate the beginning part of the words I use when speaking with him.
The progress has been tremendous. There are still many things to work on, we need to be more vigilant about sitting down with him to do quieter tasks, which can be a challenge because he likes to be super active.
Making sure he is "checked in" when asking for items or when he is asked to do a task. His inclination is to look away while doing these things and not be fully present, so we are encouraging more eye contact during these activities.
Overall I feel like he's making great improvements, I'm so proud of him. It's incredible how much work it takes for him to do simple things most take for granted, even myself. I try to really appreciate and celebrate every accomplishment E-man makes because it's not just us and his teachers doing the work, he does too. It is truly inspiring.

Autism and Parenting

I think being a parent is like going through an obstacle course and just trying your best to make it to the end. The end being your child growing up to be self sufficient, well rounded, with common sense and compassion.
Being a parent with a special needs child is like going through that same obstacle course, but with a blind fold.
You are at the starting line with all the other parents, preparing yourself for the long journey. That's when the twist comes along. Figure out this course, use every sense you can rely on but your sight. Sounds daunting right?
Believe me, it is. 
You start fumbling around, trying to get your bearings. Determining the location of booby traps, getting through complex puzzles that come your way and realizing who you can really depend on. This road can not be travelled alone, you have to put your trust in others to help keep you going.
The blessing is that things start to become easier and hard won victories are celebrated.
What I've come to realize trekking through all this is that my boys will be ok, my husband and I will be ok. Everyone has a twist in their obstacle course. Big, small, now or later a twist comes out of the blue to knock you on your ass.
The important thing is that you get up and just keep going.
Our journey isn't worse than any others, it's just different. 

Personal Growth

I've been on a personal journey to get healthy for about a year and a half. Actually, let me back up. It really started about 3 years ago when I reconnected with an old friend from high school who ended up having a career in personal training. After a few months of catching up over the phone I expressed a desire to get healthy/lose weight, which of course I had said a million times before but never really meant it. 
She said four simple words that changed my life forever: "I can help you". 
This was the beginning to a conversation that has lasted for 3 years. I started out with a new eating plan and was quickly derailed by getting pregnant with Little Buddy. Of course I took that as an opportunity to eat what ever the hell I wanted and gain 40 lbs, not the best course of action obviously. 
Two weeks following the birth of LB, E-man was diagnosed with autism. 
It was very hard coping in this new reality with postpartum hormones running around, I was a wreck to say the least. A month went by and with gentle prodding from my friend we started our getting healthy campaign. I've since lost 60 lbs, have run a 5k and I am training for a 10k currently. 
I can't say it's been easy, I've had ups and downs and without the help and support of my long lost pal I wouldn't have kept it up. If you've ever watched Biggest Loser you'll be familiar with the idea that contestants go into it thinking "I want to look good, I want to be healthy for x, y, z" and it ends up being a very emotional, mental and spiritual journey. 
I've really had to look at myself and why I let myself get so overweight. 
The simple answer was that I stopped caring. A consistent thought in my head regarding my health was "whatever, I don't care" and then consume whatever I could get my hands on. Why did I stop caring?
I think there are many reasons, family turmoil, feeling too comfortable in my relationship with my boyfriend (now husband), not wanting to be seen and basically hiding behind the fat.  I have to say learning these hard truths have been so worth it thus far. The things I've discovered about myself and the strength I possess are revelations, which my friend saw in me all along. 
Recently with LB meeting criteria for autism combined with the holidays I had the old apathetic feelings creeping back. I only gave a half hearted attempt at eating well and exercising. I stewed in self pity and  lacked motivation to even clean the house properly. 
Realizing that I would undo all the hard work I had put into the last year and a half, my husband and I put together a plan to get our shit together for 2012. We created goals to work on and I joined an online group of parents with kids with autism that wanted to "decrapify" their lives as well.
Of course my trainer/best friend has helped pull me out of my slump and kicked my booty in the right direction.
All of these things combined have helped me get back on track and excited again to get to my goal weight. I think taking care of myself will help me be a better Mom, wife, sister, daughter and friend. 
The journey is still going, I'm still learning about myself and the weight loss/getting fit is actually just a bonus to the real prize- loving and accepting  myself.

E-man rises

In light of everything going on with Little Buddy I wanted to create a separate post detailing how E-man is doing. 

E-man as I had mentioned in a previous post has started using verbal imitation. A few examples of the words he's attempting to imitate are cheese, cracker, cookie, and popcorn. As you can see he is highly motivated by food! At this point I think he has a glimmer of understanding that words can help him get what he wants. It was a similar process when we were trying to teach him to point for what he wanted instead of hand leading. 
It started out with modeling the pointing, using hand over hand to create the point with his hand, prompting him to use it and slowly fading away the prompt. This process took about 6 months of repetition and using highly desired objects (food most of the time) until he finally got it on his own. 
Occasionally he'll still need a prompt but that's usually if he's distracted by something else going on. 
Another huge accomplishment is his ability to imitate. Typically developing kids naturally imitate and use that as a method of learning. 
E-man had to be taught to imitate and it took just over a year to meet that goal.  This is huge because it leads to so many more learning opportunities and we see him applying this new skill all the time. 
His attendance to his surroundings and people around him has also greatly improved. He looks up at me all the time to "check in" and the increased eye contact is so special because I can read how he feels so much better! 
Teaching him to point,  learn imitation and increase his awareness really helped me understand that E-man can make these gains but it will take quite some time and effort to get him to his goals. You know what? I'm perfectly fine with that. As long as we get there and he's able to accomplish these milestones it doesn't matter how long it takes. Obviously we can't do this on our own and the school that he attends deserve much of the praise. 
An eye-opening lesson for me is that all of this gets my husband and I closer to understanding and knowing his personality. It's in there but it needs some coaxing to come out. It literally fills me with pride when he accomplishes new skills and is willing to try more to get to his goals.

Before I really understood what autism was I assumed that the children were not affectionate and did not connect in a meaningfully way with people. I now know that is quite to the contrary!
He loves his hugs and kisses, laughs when Daddy is being silly, and can be quite mischievous. He'll laugh when he takes something from the kitchen that isn't a toy, put on his devil grin when he bothers his little brother. It's so exciting to see him blossom. 

I really feel like seeing how far E-man has come gives me so much hope with Little Buddy's future. E-man can blaze the trail for his younger brother. He'll teach this little family that with hard work and determination the sky is the limit.

Getting to a better place

So much has been happening for our little family unit recently.
On Friday Little Buddy had his 18 month check up with the Infant Sibling Study. They administered something called the ADOS, which is a diagnostic tool for autism. What they found is that currently Little Buddy "meets criteria" for autism.
I questioned the use of the phrase "meets criteria" instead of just saying "diagnosis". The explanation is that there are those that question whether a child can truly be diagnosed before the age of 2 years, so as of right now they say "meets criteria". This is only frustrating because services may be delayed if there is no formal diagnosis. Currently he is receiving 3 hours a week which I'm glad to say he is tolerating well. For now it's up in the air what exactly will happen but I'm confident we'll be able to increase his hours at some point.
All logistics aside, I wasn't surprised with the results of the ADOS. Little Buddy has slowly but surely been blossoming with autistic symptoms. Does this mean that I am any less devastated? No. I am that plus so many other emotions. It's hard to put into words that I am full of hope and sadness, gratitude and pain, relief and anxiety. I have tough moments when I want to cry at the injustice of it but I look at the faces of my little boys and they are so beautiful. They are healthy, happy and so very much loved. I can find many things to be thankful for that the brightness can dull the anguish. It will be a tough road for my husband and I but we can and will walk through the fire.