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?

It's time...

So where was I all this time? Well, when I last blogged I announced I was pregnant. I had another baby boy, Quinn, in May 2009. That in itself was full of challenges. The past year and a half was mainly about my pregnancy, transitioning into life from 1 to 2 kids and all that it entails.

School started as usual that fall and Kai began 2nd grade. He had a new teacher who I really liked, but I began to get fed up with the administration and the lack of attention to "our" ASD kids. I spent the last three years trying to do things for the kids at the school. I attempted to organize a parent support group, became room mom and helped organize their parties and anything needed. I chaperoned field trips, volunteered more often than not and each time I was welcomed with a slap in the face, attitudes, and red tape. By the time January 2010 came, I was done. We started paperwork to get him out of the public school system and enrolled him in a private school. Did I mention that the last straw was when I encountered resistance to bringing in an air purifier to my son's room? Yet another lifestyle change came our way. We now have payments we did not have before given the school is 30 minutes from our house! It had to be done. He is 8. We refused to let him rot in the public school system and not give him a chance at a better education. I cannot waste time fighting for his rights so that by the time he is 20 and too late I might have made a dent in all their red-tape bullshit. Not happening. Not on my watch. 

This last March we switched doctors to one four hours from our house. So far, so good. He also started hippotherapy and has been doing a social skills group once a week as well. We have all been busy making sure the kids' needs are met.

Quinn has been a blessing and a joy to our entire family. He is a very happy, social and laid-back baby. He just turned a year old and does have some motor skill delays (no crawling, pulling up or walking), but no autism. He started to babble at 11 months, said "momma" at 12 months and is beginning to wave bye-bye. Late, but it's there. He has great eye contact too! We have taken every known precaution before and during the pregnancy and this past year. Only time will tell if we beat the autism monster or not. Kai loves to steal Quinn's toys, and Quinn just adores to watch all he does intently.

I recently took a leave of absence from my job to care full-time for Quinn and truly dedicate this next year to catching him up with his therapies and at home care. This should leave more time to blog. I am glad to be back. I have missed it!

Hope everyone has a fantastic summer!

I'm baaaaaaaaaaack!

Well, sort of.

I will tell you all that I made a new year's resolution to start blogging again and well, as you can see, it's June! Better late than never?

There is so much to tell that I do not know where to start. A lot of significant changes in our lives including a brand spanking new baby brother for the little monkey! Needless to say, I have been busy.

I plan on reviewing where I left off and just picking it up with our day to day new adventures. I will fit in a review of our lives since December 2008 up to now. Let's see how I can make it a short one! Yikes!

I might also start a new blog to pair up with this one for the newest member of our family. Maybe.

Thanks for reading and for the messages I have received all this time during my hiatus.

Preventing Autism 101: Planning for our GREEN baby

We wanted a brother for Kai since he was two. Things did not pan out just how we dreamed of for a while. Five years later Quinn finally joined our family. It was a long, stressful, and painful journey. What matters now is that Quinn is here and we could not be happier. He is an amazing little boy. His smile lights up our day. Always smiling, always eager to play and learn. He loves his big brother and I cannot wait until I see them play together.

Preparing for Quinn, however, took a lot of effort. I am not talking about a lot of trips to Babies R Us. I am talking about being physically, mentally and environmentally ready for Quinn to join us. Because I already had Kai who has an autism spectrum diagnosis, I had to take as many preparations as possible to ensure that the things I could control were under control: my body and the environment in which Quinn would live. This was important. Kai's blood tests and urine toxic metals test showed elevated levels of mercury, thallium, tin, aluminum, and arsenic. This meant that Kai's body could not naturally detox itself from all of these chemicals we all come into contact with daily. If there was any chance Quinn's would be the same, we were going to take every precaution to make sure his exposure was significantly minimized.

I visited the holistic doctor who was then treating Kai. I tested myself for toxic metals and even did several rounds of chelation. Gasp! My levels were normal or as the doctor put it, I " had as many metals as any human being who had been walking on this earth for thirty-something years had." We slowly changed our way of living to exclude harsh chemicals from our daily lives and got used to doing things differently. We started in the kitchen. We reduced the use of the microwave, stopped storing items in plastic, got rid of aluminum foil, started using glass and wax paper. More importantly, we changed our diet to consist mostly of organic foods. Quinn would have glass bottles, and everything else would be BPA free and free of anything else that would be considered toxic.

We painted his room in a zero VOC Sherwin Williams paint and allowed daily periods to air out anything left in his room by opening the windows. Additionally, we invested in several air purifiers to put in his nursery and throughout the house. His crib was made of solid wood and painted with non-toxic paint. We passed on any area rugs for his room because those tend to be highly toxic to any environment.

Once that was done, we found ALL ORGANIC fitted sheets, crib mattress, swing, bassinet, bassinet sheets and the bassinet mattress! Phew! That was a pain to search for and choose! It's not that we don't want him to live in the real world. He is going to be already exposed to all of the crap in our environment every single day. Why add even more environmental insult to a potential genetic predisposition we can somewhat control?

As for me, I took my prenatal vitamins, avoided ALL fish (no matter just how low the mercury levels were) and stayed as healthy as I could. I had a fantastic pregnancy with no complications and somehow only gained 13 pounds (maybe the extra 10 I had going into this was a factor?).

One of my best friends held a baby shower for us: a gorgeous, glorious green-themed shower and that set the tone. We were now officially ready to meet Quinn. Will he beat the odds and escape autism? I don't know. I do know that I will do my damn very best to try! I will journal his journey in this world. His quest, against all odds.

Update on us...it's been a while!

It has been a crazy month!

Had a lot of work that kept me busy and added to my already high stress.

I finally feel like these last two weeks I have been able to rest, and I am looking forward to this faux South Florida "winter" break. :)

A lot to post about but where to even begin?

I will begin with the little monkey.

- Reports after reports from teachers and therapists all said just how well he's been doing compared to before treatment with the new doctor. 

- Got a phone call finally yesterday that yes, his stool sample came in and instead of a +3 he is now at a +1 with yeast which means they are not colonizing successfully like before. Have an appointment for next week to probably repeat the yeast protocol. Not looking forward to it though.

- Back to the school and therapy news, he has been using the learned phrases from ABA and using them in real life scenarios. An example is when he said, "He is riding the bike" to tell me that a child that was at our house was using his bike/tv toy and to get him out! lol

- Some skills have come naturally to him. Simple things like putting his socks on perfectly, shirt and shorts are all great breakthroughs. Such little things that we all take for granted.

- He is riding his razor scooter much faster now and balancing quite well compared to last month too!

- While at his holiday party at school he grabbed my arm and said "Mommy, go home now please." Not that he wanted me to go home, this meant LET'S go back now, please. I almost packed up and left just because he formed the sentence on his own without it being taught to him. We didn't leave though. Made him stay. Mean mommy. :)

- So, overall, he has been a doll behavior wise and back to his usual laid back, smiling, singing and dancing adorable monkey with all sorts of new skills to show!


On to something else, CHRISTMAS IS COMING!! Woohoo...yes, I am excited. We'll see how excited after Thursday, but it's been a full year, and my hopes are high once again. Last year he conquered opening gifts with A LOT of prompting, but he did it. He showed particular interest in the gifts, but it was a success to have him rip the paper open even if he did run away afterward.

What started out as a frustrating task of putting the ornaments on the tree ended up being very enjoyable. He put on at least three ornaments on the tree. He had done so last year as well so when he initially refused I thought he was regressing! But, turns out he just wasn't as into the Nemo ornament as I was. As soon as I showed him an old one he did it with no problem. Yeh!

I have finished wrapping the gifts. All of the toys have been taken out of the box, filled with batteries and are ready to be played with right out of the wrapping! I labeled the outside of the wrapping with his name and wrote the word TOY really big. I also added the corresponding #s to see if I can get a pattern going to show him that a- it's a gift FOR HIM, b- it's a TOY and c- there is a limited amount he will have to open. I also numbered them from least enjoyable (a spinning top) to the one he is going to go insane for (the leapster). Only because if he gets the Leapster first, the other toys do not stand a chance! ha ha ha ha

I took the contents out of one of the gifts this afternoon and left it unwrapped by the tree to "test" him. It's too much all on Christmas morning anyway so this is his early bird one. He bit! Boy did he ever! He ran to the box which is way bigger than him, brought it over to me and said: "Mommy, open golf please!" (It's a mini golf kiddie set). I was so excited. I rushed to get the contents I had hidden and brought it out for him. He proceeded to help me build it. Wasn't too hard but it was such a nice feeling to have him next to me "building" something.

Ok, almost done I promise. One more BIG announcements:

1- I am 5 months pregnant! Yes! Very exciting. It's another boy, so there is a lot of worrying going on, but we are doing our best to make this a healthy pregnancy. Taking my prenatal vitamins (which have been very tough for me), probiotics, eating as much organic food as I can, planning a toxic-free nursery and well, you get the picture. REALLY trying to keep those darn "environmental insults" out of our lives. Due date, May 10th! Woohoo!!!



Have a GREAT holiday everyone and as always, thanks for reading!

Have a GREAT holiday everyone and as always, thanks for reading!