TIME

August 2007.
That's when I first started this blog.
That was exactly four years ago.
That was three years AFTER "the diagnosis."
That's a total of 7 years of dealing with the crap that is AUTISM.

If you need a refresher, here is the link to my first post ever.
http://asdqueenbee.blogspot.com/2007/08/first-official-post.html

I just turned 40. Reaching such a significant milestone made me stop and take a look back at my life a bit. Where have I been? What have I done? Reading my first post on this blog makes me cringe. At the time I was about to enter the lowest of my lowest points in my life. I had no idea I was drowning. Looking back at all the posts since then makes me want to cry along with that girl typing away. In a way, I needed this blog. I needed to vent and express all that I was going through. It's not that autism has gotten easier. Actually, I still can't put my finger on exactly what IT is. Autism still sucks. I still have low points. The difference is that maybe now I can handle it a little more gracefully. Just a little.

My husband and I have realized that this is not a short-term issue. We have realized that we have spent the majority of our 30s swimming against the current, not making it very far and almost drowning. It's hard to parent and live when you are exhausted from "swimming." We all know that 80% of marriages of autism parents do not make it. Who wants to be a statistic? Sometime last year my husband and I took a step back and decided that we were going to keep swimming, but we would do some things differently. We were going to take self-imposed timeouts to play. Adult play. You know, dining? Movies? Something OTHER than autism? What a concept! We rallied our troops and realized that we have a LOT of family support in terms of babysitting. At least more than the average person. Instead of staying home after the kids have gone to sleep, we go out. We have actual adult conversations. We have wine. Lost of wine. Sometimes, we even travel. Gasp! Yup, travel.

It could not have come at a better time. Taking these timeouts has made us more patient, loving and level-headed. We are not letting the anger consume us anymore. We are allowing it to fuel us to continue on a more positive path. Positive. Did I just type that? Wow. Of course, we still lose it from time to time. We cry, we scream, and we curse autism. It sucks you know. But all I am saying is that it has gotten...BETTER.

I have met a couple of moms recently who have told me they look up to me. Me? Really? Why? Don't they know I am a mess? Surely they don't mean me. But, it seems as though I have grown out of a lot of the autism grief and started controlling it instead of letting it control me and my life. It has been quite an eye-opener. I was also talking to a very old friend today. She reminded me just how far I have come. "You are smiling again," she said. "There were a lot of things you use to say years ago that made me realize just what a bad place you were in and I just listened and supported you." If you read the first line in my first post from 2007, it says "Flash that million dollar smile." It was a reference to a high school yearbook phrase used to describe a photo of mine from 20 years ago. Phew! That was a long time ago. For a long time there, I did not know where that girl went. Where was she? Who was this other person taking over her body?

I owe part of my "improvement" to Quinn's birth too. Quinn is such a happy little boy. He lights up any room with his smile and attitude. We worked hard for Quinn and although it has been tough and he is not exactly out of the autism window yet, he helped put things into focus. Knowing Kai and Quinn will potentially have each other as companions for life puts me at ease a bit. Comparing Quinn's life to Kai's I have been able to make level-headed decisions that will benefit them both and ourselves. I am also more focused because of them.

Kai is always improving. He is currently attending an amazing summer camp where he has learned how to swim underwater! My little Nemo! He is reading at an upper 2nd-grade level and doing 1st-grade math (although he is going into 4th grade). He speaks more fluently now and exhibiting a lot of new cognitive skills. Yes, he is still following a holistic protocol, attends an ABA-based school, does hippotherapy and attends a weekly social group. But, I don't know what has worked or what has not worked. I do know that besides all the treatments and therapies we have thrown his way, TIME has helped and been key. Is there a common denominator here?

TIME
It has worked for me.
It has worked for Kai.

I hope the 40s bring more positive into my life than it did in my 30s. I am welcoming it with open arms because frankly, my feet hurt. They hurt from kicking so much ass lately. Oh yeah, you read it correctly. Cheesy, but I mean it. Bring it on. I am ready. New decade. New me. For me and for my kids because now, I am smiling again.

Oh, and in case you were wondering about the adorable PEACE LOVE AUTISM logo I used above for this entry, here is the scoop:

My "sister" blog, PUZZLE PEACE NOW, is owned by my best friend and partner in crime. It is all about what brings we ASD parents "peace" on this crazy journey. She is also a very talented blogger unlike myself (please spare comparisons..be nice!). Also, you can pick up one of those logos as your very own CAR MAGNET! Time to lose that old school blue puzzle one you have on your car and pick this one up! Hurry! Go read!

Preventing Autism 102

Quinn is about to turn 2. By the time his big brother Kai was 2, we were starting on our journey into autism. We can't help compare. Autism is too serious not to.

Quinn's c-section started off perfectly. He was somehow lodged in so deeply they had to use a vacuum to assist his exit. That is, a vacuum-assisted c-section. He did not cry right away. All you have when you are laying there is waiting to hear the baby's cry. I waited, waited, waited and there it was WAAAAAAAAA WAAAAAAAAA WAAAAAAAAAAA. What an incredible feeling! I can finally take a deep breath and relax. I made it. 

And just like that my bubble was popped. 

The neurologist on call stuck her face too close to mine to say: "Mom, we are going to take him for some testing and observation." Huh? What is going on? Of course, I was half drugged and out of it. The surgeon finished my surgery, as I stayed there helpless. The hubby had instructions to follow Quinn at all costs.

All I wanted was to hear him cry and know he was OK. Now, this. In the recovery room, I stayed with one of my friends. We did not talk about the birth in detail. She was not saying much, and I was this drunken woman trying to slur my words and make sense. When was this woozy feeling going to leave? My husband finally appeared after what seemed like hours. He promised they would bring the baby soon. I asked him what had happened. He said, "Something is wrong, we don't know what." I asked " Down Syndrome?" (because my BIL has DS) and he said, " I don't know." Speechless. I still felt drugged from the surgery, but I knew this sucked.

To fast-forward through the drama that was the delivery, here is the shorter version. When he was born they felt his head was too big, his ears too low, had an undescended testicle, and because he has a patch of blond hair on one side, something could be wrong. They took precautions, did a sonogram and drew blood for genetic testing. All eventually came back normal. He had a little bit of jaundice and had to go home with a bile-blanket. He had to go in daily to get his blood tested etc. I was anxious for this to be over to finally enjoy my baby! Well, he is going to be 2, and I still have not been able to rest and enjoy him like a typical mom.

He has always been way below the average percentile. Steadily growing but way low in height and weight. It felt like it took forever for him to reach 10lbs. Trying to join programs like My Gym or Gymboree was useless because he was never in his age group and could never participate.

He did not sit until he was about 11 months, babbling started at 12 months, pulled to knees at 21 months and just now at 22 months started to crawl. It has been a long year of OT, PT, and ST. He has been to three pediatricians, an orthopedic surgeon, a hematologist, urologist and a neurologist. All testing comes back normal, and the only explanation is that he is hypotonic: low muscle toned. In my research obsession, while reading on autism for Kai, I found an article that most kids with autism have an MTHFR mutation. I had Quinn tested for it, and it was positive. Took it to the neurologist who was more insulted that I had found that before he did than worried about what it could mean. Really, dude? Ultimately, the hematologist said most people have a mutation and don't know it, was not concerned and sent me on my way.

We live day in and out watching for autism clues. We worry that he doesn't point although his occupational and physical therapists both assure me that he could not possibly point because that entails isolating his finger and he is not there yet physically. It seems that he is delayed in all areas equally. He is not a cuddler who lays his head on your shoulder or chest often. The only other thing of concern is crossing of his legs when on the high chair and mounting his middle finger on his index finger on occasion. Subtle. Does it mean anything? Who the heck knows? Maybe I am looking too much into every single thing.

Here is what we know: He is awesome! He is a very social baby. He loves to smile at everyone, wave hello and goodbye, sign for 'all done' and 'more', loves hugs, kisses and has amazing eye contact. Does not cry at sudden sounds, is OK with change, eats pretty much anything, loves getting messy and textures. He notices small sounds and is always happy. The best part of my day is going into his room in the morning. He always has a huge smile for me and is so genuinely excited to just be. Yet, we cannot sleep at night because we are afraid his delay might be autism. We won't know for at least another year.
Right now, he got accepted into an intensive early intervention program. It meets for 4 hours, twice a week. It's a baby boot camp to get him up to par with his peers in the hopes he can start a typical preschool at 3. The rest of the days are filled with two 1/2 hour PT sessions, two 1/2 hour OT sessions and one 1/2 of speech.

He eats a mostly organic diet free of gluten, casein, sugars or anything processed, takes nutritional yeast supplements, is on probiotics, vitamin D, folate, cod liver oil and flaxseed oil. Other than his delay, he is very healthy. He has never had an ear infection and he has been sick perhaps five times total. By sick I mean two days of sneezing or coughing and maybe a runny nose. He almost had a fever one time when it reached 100, but it went away as soon as it came.

As parents of 8-year-old Kai (ASD), we cannot help but micromanage Quinn's everything. We are doing everything and anything to prevent autism. Dodging the autism bullet is not easy when it seems you are genetically predisposed to it. At this point, we are still running and exhausted!