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!

Disney Cupid Shuffle...

We survived Disney again!

Phew! Did not think we would but we did! Of course, now I don't think I want to go back for a while. The thing is, it was exhausting to go with both kids. Quinn is too small to truly enjoy it and having him in the stroller just slowed us all down.

Kai loved it of course. He visited his usual faves: Small world, carousel, teacups and the character meet and greets. We also stayed at the Nickelodeon Suites (do not recommend), and he met the characters there as well.

I was reading over my last Disney blog posts, and we have sure come a long way! Kai is just such a different child now. So much more aware and mature within his autism. Meaning, he is nine but acts like a four-year-old instead of a two-year-old. I can say we are now seasoned Disney parents. I have also become inspired to write a Disney 101 for parents of kids with autism so look out for that sometime in the near future. (I would say soon, but with my record, that could be December!)

The thing I will remember most about this trip though has nothing to do with Disney. 

While getting ready for dinner one night, I heard someone in the other room singing "to the right, to the right, to the right, to the right." I stopped what I was doing and run into the other room. When I asked the other adults about it, they shrugged their shoulders and said they thought "it was perhaps the tv." I insisted that it sounded like Kai. I pulled Kai over and asked him to do "to the right, to the right." He looks up at me, smiles and starts singing and dancing! If you don't know because you have been living under a rock, go to YouTube and search CUPID SHUFFLE. Yes, that is what he was doing! Who taught him that? Where did he pick it up? I instantly remembered that he had been working on a secret project for the end of the school year show. I e-mailed the teacher about it, and sure enough, she confirmed they had been working on it for a while.

That same night, hours later, as we got back from dinner, just as we are literally stepping out of the car we heard the cupid shuffle playing loudly by the hotel pool. I rushed Kai over, and he stood there frozen with a huge smile on his face. He could not believe his eyes. There happened to be a Girl Scout party at the hotel pool with a DJ, and about 80 little girls were doing the cupid shuffle right in front of us. We could not enter because it was a private event, but we had a front and center view from the corridor. We started dancing along with them as we both smiled ear to ear. What a great moment! Completely random, but oh so fun! His eye gaze kept shifting from them to me as he danced.

A couple of days ago we attended the actual end of the school year show where he did a great job on the stage performing it for everyone. It was amazing to finally see him participate in something most kids have been doing since Kindergarten! He is now in 3rd grade. Most enjoyable of all was to see him beaming and doing it without assistance.

So there you have it. Something always comes from these trips I love to love and love to hate. We always have a lot of firsts while in Orlando and not sure why that is. The magic of  Disney? Who knows. I do know I will remember that moment forever.

Disney bound...here we go again..

Not sure what I was thinking...

A big group of our friends is driving up to Orlando to celebrate one of the girl's birthdays. 27 of us to be exact: 14 adults, 13 kids.We waited until the last minute to make the decision. We figured we would "try." Worst case scenario, we can hide in our rooms and give the kids free range of the I-series: iPad, iPhones, iPod and I-DONTCARE!

I rearranged our schedules today so that my husband would pick up Kai and so Quinn's therapies would dwindle from 3 to just 1.

Of course, I should not be blogging. I should be packing. Procrastinating the inevitable, I guess. Just the thought of the amount of packing we have to do makes me nauseous. Traveling with an almost 9-year-old on the spectrum, a 2-year-old with developmental delays, a Disney hating husband and an SUV packed with every single thing you can imagine is just NOT easy.

For starters, both kids are on a mostly organic,  gluten, soy, peanut and casein FREE diet. This means we take everything AND the kitchen sink. OK, not really but almost. Yes, there are things you can now get at most resorts for them to eat, but you still need most of the stuff because of the "what if" factor. What if they don't have it or you can't dine at the time they have? The kids can't wait or starve because we all know that equals: tantrums! Shoot, I have a tantrum too if I can't eat. Of course, I am a mom. I am entitled to one too right? And mostly because it's my job to pack all of this stuff. But I digress....Luckily, the hotel we are staying at has a full kitchen. Phew! I hate having to take the toaster oven each time in the past. What a pain. This time I can leave the pots, plates, etc. behind! I still need to take a GFCF loaf of bread, their hummus spread, pasta noodles, tomato sauce, goat milk, bananas, cereals, chicken nuggets, waffles, crackers, tater tots, pizzas, applesauce, baby food, baby bottle, ice packs, cooler, lunchboxes, etc. and that's off the top of my head. It also means I have to not only prepare breakfast in the morning, but precook and pack what the kids will be having for lunch each day to take with me in the morning. Nothing spontaneous here like a hot dog or cotton candy! Oh no! Not us.

Traveling with the baby who is only crawling right now means taking a bag of toys to spread out through the room. The hotel says the crib "is not guaranteed" and "we can only request one upon checking in." This means we have no choice but to take the portable crib with the corresponding mattress, sheets and the baby's mobile. Phew. Then there is the topic of CLOTHES. I will spare you my story on how much I like to take on trips. Really. It's better not to tell you about it. Let's just focus on the baby wearing 4 outfits a day. Oh yes, at least 4. There is the morning outfit, the nap pajamas, then the afternoon outfit and the night pajamas (thicker). It's only 4 if he didn't poop, pee, drool or dirty one of them during one of those meals I so lovingly prepare at 7:30am. In which case, backup outfit # 5 appears. Yes, I do not like toting around a dirty toddler. Which leads me to BIBS! When traveling with a teething baby, you are guaranteed soaked bibs or shirts. We established I don't do dirty babies, so I have to carry at least 5-6 per day and a bunch of the disposable ones for meals.

Then let's talk about my monkey. We have to make sure the chargers are packed, the Nintendo and charger, the Leapster and charger and the DVDs for the car. It's that or "charge it!" said by him at least 30 times in a minute until it's charged. Good times.

Last fall we made a similar trip with the same group of friends, and we vowed never to do it again. They all sat around, drank piña coladas and beer, read books as they watched their kids splash in the water and called out orders and scoldings from their chairs. My husband and I had one kid each. My husband shadowed the ASD one, and I watched the then 15-month-old who refused to peacefully nap under the umbrella and sheet we had prepared for him. How do normal people do it? Wow. I cannot imagine not having to worry about meals because you can just walk into a restaurant and eat or wait for a table to be ready to do so. Only having to pack your clothes. Nice. Walking around without having to be physically prompting the kids and actually having your personal space at all times. Speechless. Heaven.

Personal space? what's that?

So why do it? Why put ourselves through the misery? I don't know. I know I space out vacations enough to forget about the bad experiences and just reminisce looking at the old photos of the beautiful ones. Perhaps that shimmer of hope that maybe this time, it will be different. This time it will be worth it.

I know the last couple of times Kai has done amazing at the park (Magic Kingdom). We have been able to diminish the negative autism behaviors down to the bare minimum. It will be the baby's first real trip since he slept through the last one at eight months. We will also try to visit Universal. Our hotel, the Nickelodeon Suites, has an extensive pool and water slide area that will be our refuge the next four days.

For old times sake, these are the links to my last two blog posts on Disney trips:

http://asdqueenbee.blogspot.com/2008/07/big-disney-news-and-more-updates-on-us.html

http://asdqueenbee.blogspot.com/2008/02/not-so-magical-disney-trip.html




Not sure what's in store for us but, I need to end this post so that I can go pack.

Will check back once we return.

May the Disney pixie dust be with us!

Tootles!

The new program

Quinn (23 months) started a new program. It's a program designed as an early intervention for kids with delays. It is in a beautiful building and set up like a preschool. They do circle time, table tasks, play time, independent work, computer time, snack, music circle, teacher time, art session and playground time! They even have a parent support group meeting 1x a week with a psychologist! They rotate these meetings in 15-20 minute intervals. He just completed his 2nd week this week. 

He did not cry on his first day. He smiled and waved at everyone happily! He transitioned beautifully and had great eye contact with all his teachers. The second day was tougher on him. He was still a good sport but a lot more hesitant during the second half of his day. 

This week he did great. In table tasks, which is puzzles and fine motor skills, he seemed to be less resistant. His weaker areas are anything having to do with strength and coordination. His favorites are circle time and story time. He is captivated by the songs and the instructor. Kai (8) would have never sat for that long or kept his eye gaze at the teacher for that long!

Since he still not walking it is tiring to take him from rotation to rotation all day. The program runs for 4 hours twice weekly. Parents are required to be there the entire time. It is tiring for me because a lot of times he is working with the teacher, and I end up just sitting there. I am sucking it up because the program is nicely run and has so much potential to change Quinn's life! For everything I did not get with Kai, life is throwing me a bone (somewhat) and offering Quinn so many amazing opportunities.

Also, we are still doing physical therapy 2x a week, occupational therapy 2x a week and speech 1x. Psychiatric sessions for me are daily! Just kidding, that's what blogging is for right?

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!

An update and a little more...

I was hoping that taking that leave of absence from work left me more time to blog. Ha! Right! That seems not to have worked out considering my last post was in August. I was way too optimistic and unrealistic. From now on I will cut myself some slack and blog when I can. Period. I had also hoped to separate both kids blogs, but that does not seem like it's going to work either. It will be one blog and one blog only. I will also blog about my life or my attempt at one and not just autism. It's a brand new ME!

Quinn (1) is making steady improvements in the motor skills area. With the help of PT, OT and ST he keeps improving on a daily basis. Not crawling or walking yet, but he is taking steps with support and also goes into knees and hands with little help. Fine motor skills are also emerging left and right. For example, he now holds his sippy cup proudly. He also signs "All done" and for "more." He is a super happy baby; everything is funny, everything makes him laugh. What a joy!

Kai (8) is also improving by leaps and bounds. At times, though, it's hard to remember that when he is scripting the entire Pillow Pets commercial or Elmo Holiday DVD. Urgh! He is reading at 2nd grade level (he is in 3rd grade) and doing double digit addition- even carrying over 1! He loves school and has started to use better-structured sentences unprompted! Imagine that! We are still using the doctor that is four hours away: ruling things out and going back to the beginning by carefully testing and acting on blood/urine/stool results. He is still on a GF/CF/SF/PF mostly organic diet. Up next, we will be going back to the "toxic metals" chapter. We had dropped that to focus on gut issues. Now that his yeast is under control and testing is back to normal we are ready for this stage again. 

He continues to attend hippotherapy and a social group both once a week. He has visited Sea World, local fair, the movies, bowling and even sleepovers with his social group. He LOVES it!

Both kids had a fabulous Christmas. Quinn seemed interested in the gifts, and Kai wanted to open all the presents- even if they were not his!

OK, off my soapbox for today.

Here is hoping everyone has a fantastic 2011!
May the force be with us all.

The magic of TOY RUS...

                                                                                                       NO, not Toys R Us, but TOY and then RUS (two words) TOY-RUS. That's what my monkey calls the store. He finally connected that if he asks for a toy, he can be driven to a store to buy it. Given that he has never really asked us to buy anything for him and we have missed birthday and Christmas gifts because of autism, we are enjoying this TOY RUS phase. He's been to Toys R Us before but never really paid much attention. Last month during a random visit, his eyes lit up, and he did not even know where to begin. He was very excited to look around and pick out a toy (or two). So what if they are all baby toys and he is eight years old? He gets it. Finally.

During the days that followed after that visit, he kept asking for TOY RUS and LADY BUG TOY over and over. I searched online for a ladybug toy and could not find what he wanted. The following week I took him again. I warned him it would be a quick five minutes (another new concept he now gets). I said in my best Tarzan autism speak "Five minutes, ladybug toy, and then bye bye." He just stared at me. Once inside, he happily walked ran in with me. I took him to all the sections he had previously visited with no success. Finally, I remembered one more area we had not looked in yet. Imagine my surprise when he picked up, not a LADY BUG TOY, but a LEARNING BUG TOY. I didn't understand him correctly. It is, however, shaped like a ladybug. He was so happy to hold it and walked to pay for it with me with no problem. So cool! I was delighted, he was happy, and the world made a lot more sense. A regular outing for us: no tears, no tantrums, no autism woes. Wow! He asked using his limited speech, and he received. Never mind that I didn't initially get the name right. I beamed knowing this exchange happened.

During the next month, he asked for TOY RUS every day after school. Of course, I din't take him every day, can't go bankrupt on this hobby now. But I do drive him once a month or so for a treat, and he always has the best time.

Lately, he's been using movie, online, and TV scripted lines and plugging them in at appropriate situations. When I pulled up he said: "I can't wait to play again!" As I took a little long putting stuff away in the car he said: "C'mon everybody, let's go outside!" As we walked towards the door he pointed and exclaimed "This way!" and "Let's go!" Once we got home, he said: "Here we are!"

At this rate, if TOY RUS keeps getting us such communication results we just might have to go once a week! He loves getting a new toy, obviously, but I can also tell he enjoys knowing that we now understand his requests. 

I might be too much of a dreamer, but this just might be a spectacular Christmas: one we have been dreaming of for a long time. 

A girl can dream, can't she? Is it December yet?