Kid Update

Since it is almost Mother's Day I thought I would discuss the accomplishments and gains that my offspring have made lately. 


E-man has been doing really well at school, his verbal imitation is slowly beginning to turn into spontaneous language. The words he says most often without prompting are "Mama" and "no". 
The other day during dinner he said
 "Mama?"
"What's up buddy?" I replied 
"Da."
"You're all done?"
"Ah da"
Addressing me and requesting something is HUGE for him. It was a really proud moment. Hearing his little voice brings me so much joy. I actually look forward to the day he's talking so much I just want him to stop! I give you permission to call me out on that one when I start complaining about it. 


He has finally grown out of his obsession with Backyardigans and now enjoys Yo Gabba Gabba, though not with as much zeal as he had for Backyardigans.  We have also been working on putting socks and shoes on by himself, brushing his teeth, and using a fork regularly. I catch myself doing things for him because I'm used to doing it all and I have to remind myself to let him learn how to do it too. The other day when we were brushing teeth I got all excited thinking he could try the sonicare tooth brush I use. Turning it on and hastily putting it to his lips I thought, this will be great! His teeth will never have cavities! As soon as it touched him he freaked and ran away. The rest of the morning he kept glancing at me and then would run for fear I'd try to use the medieval torture device on him again. 
What I should have done is just let him see the sonicare and touch it without turning it on. Gradually over several days letting him get used to it and eventually brush his teeth with it. 
So it's a learning process for everyone. 
Another big thing for E-man is preschool for the fall, we found one that works well with the program he is in. We went to go visit and everyone was really nice and didn't seem at all worried about the whole autism thing. 
I actually saw a kid I recognized from E-mans's school who looked like he was doing just fine. It made me feel
like this place would be the right fit. 


LB has been doing great with his therapy at the house. It took a little while for him to get used to me "dropping him off" in the front room with his teacher. Now he runs in and plays and interacts pretty well with them. His receptive language has been increasing. He understands outside, let's go, book, ba-ba, snack, and cookie. His eye contact and name recognition has improved quite a bit. He babbles a good amount and about half the time will try to repeat back parts of words. It's actually really interesting to see the differences in both boys. Where E-man has always had a slow but steady pace of skill acquisition, LB makes leaps and bounds then cools off for awhile. 

Both boys have had forward motion in their progress. There are still problem behaviors we are working on but I feel like the gains overshadow the downsides at this point. 
It's exciting to be scouting out preschools for E-man and watching LB blossom with the help of therapy. 
Sometimes it feels like I blink and 6 months have sped by, the kids growing and changing throughout. 
I think my best bet is to try to savor the small moments and cherish the memories.

ZZZZZZ

Before having children I had no idea what sleep deprivation was. I might have tried to convince you that I slept bad and really needed a nap, but I was just being dramatic.  Obviously having 2 kids and going through the whole newborn experience gave me a new perspective. We survived though and I'm glad I'm not waking up every 2 hours to nurse and change a diaper. What we are dealing with now is something called "night waking". It's a symptom of autism that many exhibit where the child has trouble going to sleep or staying asleep. The cause is not known, although there are some theories that there might be a disturbance in melatonin production. We have had mixture of both, E-man started waking up randomly a few months ago. It will be a couple weeks of waking up around 2 or 3 in the morning and being wired, usually taking another couple of hours to fall back to sleep. Then we will have a few weeks of fairly normal sleep with the occasional early bird wake up call. Now LB is starting to do the same thing, taking over an hour to fall asleep or waking in the middle of the night.  When the crazy sleep cycles coincide, I start to get a little crazy. For example, last night LB woke up from 1am-3am and then E-man was up bright and early at 5:45am.  Sometimes I wonder if I should go to bed when they do but I really enjoy the time I get to spend with Martin just hanging out.  It feels like a constant struggle with some new problem to figure out. There are days when I'm doing great and feel like I have a handle on it. Then there are days it feels like I'm just barely hanging on. What I'm realizing is that this is a marathon, not a race. I've got to keep my steady pace to keep it all going. So the plan for now it to keep moving, one foot in front of the other. I don't care how long it takes or how exhausted I am, I'm going to keep fighting.

Milestones

Today is my 30th birthday. The strange thing is that I'm excited to be turning 30, and there a a lot of reasons for the excitement.
A few months ago I was really down in the dumps about all the autism stuff with the boys and I had a conversation with Fiona, one of my BFF's who also happens to be my trainer. 
She gave me some great advice. Holding on to the pain and sadness was bad for me, poisoning my life. Her advice was to put it down and trust that God knew what he was doing with my life. As an example she explained its like in Lord of the Rings when Gollum keeps holding on to the ring and it ruins his life (I know this is a dorky example but since I'm a nerd it was quite effective). 
That advice really helped me to stop wallowing in the sad part of autism. I'm not saying that I don't allow myself to get upset, I just let it be a few moments instead of all day or all week. I started to feel so much better emotionally and mentally. 
However, I wasn't putting my 100% best into exercising and eating well. I'd put the work in for a few days only to sabotage it all in a weekend eating crap and being lazy. The lesson hadn't fully sunk in. Recently
I was talking to  Fiona, confessing that I wasn't working as hard as I should and she pointed out that even though mentally I felt better I hadn't really "put it down" because part of healing also means taking care of yourself. What a revelation!
I was not connecting the dots at all.
In order to make sure all aspects of my life are productive and happy I need to take care of myself first. 
The thoughts and feelings that were improving needed to turn into action in order to be fully effective.
Going into my 30's I feel hopeful.
I'm healthier than I've ever been in my life, I have goals for myself, my kids and my marriage. There is purpose to my path forward. 
I feel blessed that even when I stumble, I have a great support system and that I am proving to myself that I am strong and capable.
So bring it on 30's!!

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.