I originally started this blog a few years ago to chronicle Noah's daily struggles with autism. It was a dark time in my life - a time when I felt that things would never get better. It was a time when I felt that all my hopes and dreams for my son and for our family had died. In my efforts to help Noah recover from autism, I began a journey that inadvertently led me to rediscover myself. I learned how to laugh again. How to dream again. How to live again. How to love again.

Autism Schmaustism. He's still our son.

This is a blog celebrating our family. Our kids. Our life.

Wednesday, June 17, 2015

Long Overdue Update!

Hey y'all! It's been an entire YEAR since I last updated this blog. I can't believe there was once a time where I blogged daily. I think Facebook has ruined me for blogging because it's so easy to just post a quick update here and there.  My blog posts always turn into novels. ;)

A year ago, I posted my educational plans for the kids over the summer. Well, that turned out to be a big wash!  My niece, Hannah, came to stay with us for six weeks over the summer and we decided to can the school and just enjoy our summer break. We had a ton of fun, so it was worth it!

So what's happened in the last year and where are we headed? Here's an update on each of the kids:

1. Noah turned 13 last October. THIRTEEN!! Y'all, I have a teenager! Noah's doing really well. Not a lot of progress, but zero regression, so it's all good.

We stopped doing biomed with Noah 7 years ago, although we continued to do therapies here and there, as our budget allowed. And, if you remember, Noah had a horrible reaction to a chelator that he was on for nearly a year when he was three. It's made us a bit wary about trying biomed again. But once Noah turned 13, something clicked inside me and I found the oomph to try again.

Next month, Noah will start seeing a MAPS (biomed autism) doctor, and we'll start from scratch. The thought of six people having to hold Noah down to take blood terrifies me, but it has to be done. We're also going to test for Lyme, which is something that's been on my radar for a while, but I've always avoided because drawing blood is so traumatic for Noah. However, we recently realized that Lyme is a spirochete and Noah has brain calcifications from a congenital TORCH infection, one of which is also a spirochete and a cousin to Lyme. We don't know which infection Noah had at birth, but it doesn't hurt to rule it out. And if it comes back positive? Well, my brain can't even go there right now...

Noah is also going to see a new neurologist. He hasn't been in years, but we're suspecting that he's having absence seizures, so I'm having to put on my big girl panties and take Noah in. We've had such horrible experiences with doctors in the past, and Noah is the worst patient EVER, but we need to find out what's going on, so off to the Neuro we go.

We're also starting Gemiini with Noah. Have you heard of it? It's the video modelling program that has all of us parents of nonverbal kids in a tizzy. I'm praying it works. I would love to hear Noah's sweet voice.  We're also continuing with RPM, and my yearly goal is for Noah to point completely independently within the next year.

And, finally, we're starting the whole family on the Paleo diet starting August 1st. I've been doing the Whole 30 since May, in preparation of breaking my sugar and froo-froo coffee drinks. I've been trying lots of new recipes and the kids have been really receptive. Except Noah. The stinker. He is a carb junkie through and through.  So we've got our work cut out for us, but we're going to do it. The older he gets, the more I realize that I just have to try harder, you know?

2. Eli will be 12 in September and, poor thing, his life is about to get turned upside down. We are pretty much 100% certain that after all these years that his issues stem from PANDAS.  It's a neuro-psychiatric illness that comes from untreated strep, and he has every single symptom. He could seriously be the poster child.  Eli is even worse with blood draws than Noah, and I'm totally making Sim go with me to this appointment because there's gonna be A LOT of blood. We're testing Eli for PANDAS, along with Lyme, food allergies, and strep. I would love to do the 23andme  genetic test, but these initial tests are going to break us, so that one might have to wait a while.

3. Nandini is 10 and we received some big news on her last Fall.  After talking with her neurologist, we discovered that Nandi's brain cyst is not in her temporal/parietal lobes, but in her FRONTAL LOBE.  Nandi had been home for 7 years at that point and this whole time we thought her cyst was somewhere else. No one ever corrected us. Y'all, frontal lobe damage is some serious stuff and it explains a whole lot. But it's also scary as all get out and I cried in the bathroom for a long time after we found out.  It really affects her ability to empathize with people, understand consequences and cause and effect, and it really, really, really impacts her working memory. As in... she has learned the same math facts over and over since she was 5 and still forgets them after a one week break. As in... it took her 7 months to read her first book and after a week break, she forgot how to read.  As in... she mastered all of her spelling words three separate times and can no longer remember how to spell them.

I'm taking her to the same neurologist that I'm taking Noah to next month and I'm so excited. The doctor just moved to Plano and she has CP herself! Her entire clinic is only for kids with cerebral palsy and she treats the whole child, so I have high hopes that she'll be able to direct us to some sort of cognitive/memory training.  Nandi presents as a child with at TBI, but because it's not a true TBI, she doesn't qualify for a lot of trials and studies. So our fingers are crossed that this neuro will help point us in the right direction.

4. Naveen just turned 6 and has been home for three years. Can you believe it? Where did the time go?  Naveen is doing great. He is the only kid that, so far, is not showing any sort of learning or cognitive delay (fingers crossed), but he's also totally not interested in learning much of anything right now.  haha.  He's a bright light in all of this and I'm so glad that we said, "YES!" when we heard about him.  He still takes medicine for his kidneys and goes for checkups every 6 months, but he's basically in the clear health wise. Hallelujah!  Naveen is a very shy kid, but he had a big breakthrough this week and went to VBS for the first time. Well, we've tried each year and he's cried and cried and I didn't make him go. But this year, I put my foot down. On the first day, I picked him up and he was so happy and said he had such a good day and that he only cried three times. lol

5. Sim  doesn't like me to talk about him because he's a super private person, but he's doing well, too. After a 4 hour RT commute to work each day, he was able to get a job a bit closer and now commutes 1 hour and 15 minutes each way.  He had to switch positions in order to do it and it cut away all of his overtime. Basically a third of his salary. Ouch. But on the plus side, he's home by 4:45 every day and that is nothing short of a miracle. It's totally worth it!!

6. Me.  Well, I had a wake up call last summer. I started having dizzy spells and couldn't remember things. My arms were going numb, and I completely failed the "finger to nose" test.  My doctor asked me to repeat four numbers and I got them all wrong. The skin had started to peel off my fingers and feet and I was losing my balance. I couldn't drive. I was terrified. Do you know what it turned out to be?  STRESS.  I thought the doctor was wrong. I mean, how could stress cause all those symptoms? But I went away for a few days after that and all my symptoms vanished. They returned when I got home.

So I had to make some pretty big decisions - or at least they were big to me. My biggest fear in the entire world is that something's going to happen to me and the kids will be without a mom. Just the thought paralyzes me. And I knew that if things didn't change that it could easily become a reality.  So, I decided to let certain things go.  I stopped stressing over the kids and their school. We still do it, but I stopped telling myself that it was my fault and that I wasn't trying hard enough. I stopped telling myself that I was a failure because I couldn't teach them what they needed to know. I started accepting that there are factors beyond my control when it comes to my children and their brains and their issues. I decided to forgive myself and not put so much pressure on myself.  I decided to take some pressure off me and increased the chores that the kids do and decided to teach them how to cook so they could help me in the kitchen. I let them watch a little more TV than I should so that I can lie down on the couch and rest when I get tired. I made a conscious decision to stop sweating the small stuff. And you know what? It worked.  It's not all sunshine and roses. I still have to remind myself to slow down... a lot. But it's good to know that it's manageable and that it's something I can control myself.

And that's pretty much it. I know I should have included pictures to break up all these words, but maybe next time.

Hopefully, I'll be back in a few weeks to discuss test results and what not.  Thanks to everyone who's emailed over the last year and asked how we're doing. I'm really sorry if I didn't reply. Someone emailed me about FAS and I wish I could remember who it was. There's a really neat story that goes along with that  and maybe I'll share that soon.