MAD MOM ABOUT AUTISM: The Long Road to Recovery for Alano

OPERATION RECOVERY 2010 (...in more ways than one)

2010-01-10T20:44:00.000-08:00

It's been more than ten weeks since I last posted. Talk about life getting in the way! One could easily fill a simple blog post of what can happen in ten hours time, a novel of a blog post of ten days worth BUT to write about what's been going on the past TEN WEEKS??!! It's the culprit that is life. It's not just the air I breathe and the beating of my heart. Sometimes I wish it was that easy.

Three holidays came and went, although quiet and somewhat somber for the first time. A few weeks after my last blog post, my grandmother past away right before Thanksgiving. We were planning to be at my sister's place this year. Instead, it was spent without my mother, who was away for the first time in Dominican Republic for her mother's funeral. My in-laws came over with home-cooked Thanksgiving dinner in tow, thank God. I really wasn't up to traveling anywhere since I was doubly upset for not being able to fly out to be with my mom, because of my foot and for the lack of funds to get there anyway. We did have a nice time thanks to my understanding in-laws :-). Soon after was Travis's birthday at the end of November, which was a good time with some cousins that were over that day.

Then came the surgery which was not scheduled until December 3rd. Boy was that a trip for me! I stayed for two nights at the hospital and adjusted to the big, bulky cast I had to wear for a few weeks until I get the lighter, stiffer version. Alano was well aware that I was away. When the boys came to visit me at the hospital with my mom, Travis and my mother-in-law, I had instant tears when I saw their little faces. Alano had the most amazing look of surprise and immediately wanted to climb up on my bed so he could rest his head on my tummy. It was utter bliss but sadness still lingered in my eyes. I told myself that I had to pull through and get home so I can get this recovery thing going already and take care of house and home and my family! Recovery in a hurry...what an oxymoron. No such thing. Everyone has a different definition of what recovery is to them. But in actuality, it's what we accept as being recovered. I put some thought into this just recently and felt that in my conclusion, in order to be REALLY recovered, there are a few steps to take to get to the total completion of recovery. Is it totally physical, emotional and mental? Or is it that we pick one or two of this group? Can I say now, after I'm about to end my six weeks of recovery of the foot surgery that I'm actually recovered? No I'm not and no I won't be. At least not right now. Could I look at Alano the same way when I say that all I want is for him to speak and therefore he's recovered? No I'm not and no he won't be. At least not right now. But there's a thing called hope. And also change to go along with it. I got to rely on both for things to happen.

Christmas and New Year's Eve was just as quiet and pleasant. Spent the first eve and day with both my family and in-laws. At least the boys got some nice presents from everyone considering how tight our belts were this year. Spent the last eve and first day of 2010 with just the four of us. It was just right! I also celebrated my birthday on the 2nd by going to see Avatar on New Year's night. What a blessing and privilege!! Please do see it if you haven't already!

As you can see, life was what life is and it was lived these past ten weeks. It was my time to deal with my health, something that I had a hard time taking in since I knew I had to put Alano and his time aside with the Path Family Center. But a most unbelievable breakthrough happened two days before the surgery at the monthly meeting I had at home with all of Alano's therapists. I gave the occupational therapist (OT) a Path Family Center business card, the last person to be informed about Alano getting his biomed treatment there in the group. Not only did she hear of the place unlike the other ladies, she was excited to know that I became a member and that I know what biomed treatment is about...just like SHE DID!!! I was gasping the whole time while she explained how she tried to educate other parents about biomedical intervention and of the new center but THEY were the skeptical ones!! AYAYAY! Then she stayed at the end of the meeting to tell me that she had a bad vibe with the speech therapist (ST) and that was the clincher for me. This was something I wanted to do for a long time but was reluctant from losing her since it took three months to find a new OT after the first OT's schedule didn't work out. We all discussed and concluded that Alano had some feeding issues that might possibly be affecting his speech delay. The OT recommended a speech pathologist (SP) who is a specialist at feeding problems. My hope is that she will be able to help with Alano's speech and feeding much better than what I felt the ST did very little of, if at all. We got into bringing more of a sensory approach to his ABA sessions so I put in a request for more time with the OT as well. This was all reinforced by the advice I got from the consult I had (and managed to keep an appointment for, nine days after surgery) with the ABA/special ed teacher & consultant at PFC. It was so worth the effort that from that day on, I buckled down and made the decision to change Alano's IEP (individualized education plan). I finally had the courage to have the ST replaced and got the paperwork going for the new SP and more time with the OT...all before the end of the year :-D!

Other than that, I did get the ball rolling with Alano's first round of bloodwork before Thanksgiving. As of tomorrow, he's going in for the second round, the ION Ig blood test, first thing in the morning. It's going to be a killer for my little guy since he needs an entourage of people to hold him down with Travis. But also, he's been going through a nine day bout of the stomach virus! Plus we have to get a urine sample by attaching a urine bag tonight when he goes to sleep (that's going to be a project) and if possible, a stool sample to send out as well. I can only hope we'll have something substantial to send for tomorrow lol! As for his progress?!! AWESOME!!! I rarely say this overused word but it really has been a beautiful experience to see him grow from the therapy so far! This child of mine loves loves loves counting from one to ten and singing the alphabet song! There was a show on TV about rockets that he was watching intently, especially the countdown from ten to one. Ever since then, he would repeat "1..2..3..2..1.." and wait for me to say "BLAST OFF!!" like a gazillion times after! But I was nudging him back to counting his numbers fully again and the pronunciation of 1-2-3 became much more crystal than the others but he tries everyday. Alano's therapists kept praising him for mastering all his tasks and they cannot believe how meticulous he is with detail and order! I couldn't believe it! Although he's been sick since the first, he's trying the best he can, even if he's getting changed 6 to 7 times a day. There is an issue with this stomach bug thing and how long he's had it. I was worried that I haven't taken him to his pediatrician this whole time, knowing that I wanted this virus to let it run its course (no pun intended 8-P!) and to take care of it as naturally as possible with the BRAT diet (bananas, rice, apples & toast as every parent knows!). I also read that it could take up to ten days depending on how bad the child has it. *SIGH*...at least Alano will see the nurse at PFC tomorrow and Travis will be able to address these concerns to her. Most recently on Friday night, we put the radio on in the boys' room and we were just hanging out and bopping along to the club music. I was standing with the crutches trying to do my crippled moves lol when lo and behold, Alano comes running over, grabs two fistfuls of my pants, looks up at me and started dancing as if he knew how to dance formally his whole life! And he was cracking up too! I wanted to fling those crutches across the room and dance the night away with him <8''-}!! Then this past lazy Sunday morning, Alano climbed up onto my bed with this adorable book he's been hooked on lately called Cleo's Counting Book. He loves pointing at the numbers and at the cute cat name Cleo too :-). All of a sudden, his first random three letter word came out! "CAT" he said!!! Over and over, he kept going and he soon had Travis and Legend as part of the grand audience! It was an absolute joy!!

I promise not to let another ten weeks go by so I shall be back before the month is over. The ION test will be the tell all of Alano's problems so I'm pretty excited about it! I've got my own appointment for hopefully good x-ray results that will lead to a stiff cast-off, walkable brace-on event by the end of this week...*sigh* 8-]! Woo freakin' hoo LOL!!

Alano and I, we're both armed, geared up and ready to go, camouflage down and all, to begin Operation Recovery 2010!!! Here's to a good year ahead for us and for our family!

Have a Happy New Year and thank you for reading!

P.S. when Alano feels better, we hope to have an new YouTube video for all to see very soon 8-D!

Our Road To Recovery Begins: Alano's Biomedical Treatment & My Foot Surgery

2009-11-02T19:56:00.000-08:00

Here are some pics from the Halloween birthday party I had for Legend & Alano. Starting at the top going down: My husband Travis with the boys on the night of October 12th. Alano was fascinated but also acting shy & scared at the same time when he saw the #2 candle with the flickering flame! Then he tried to get a decent shot of them on Halloween while they went out trick-r-treating (Legend is a Hot Wheels race car driver & Alano is SuperBoy 8-D!). Up above is their delicious ice-cream cake at the party. Down left, I'm holding Legend with my mummy costume on, basically a roll of toilet paper and some gauze tape wrapped around my head! Above that, I'm holding Alano while in my robe as he continued to show his awe for the candle!

The party was just what the boys needed. Although my dad was sick and my sister Tania was working, I was happy to have my other sister Rosa over with her family, as well as my aunts, uncle and in-laws. The decorations were fun to put up to make it festive & a bit on the scary side with cobwebs & spiders everywhere! But I have to say thankfully that I'm glad the boys weren't born close to Halloween! It was a cool idea but not to do every year. I believe the day belongs to the kids only. But then again, I haven't been out in so long that EVERYTHING really has been about the boys...and nothing else, until the sixth month mark hits this month that I've been on crutches with an unresolved ankle injury. Now I can finally say that surgery is going to happen sometime before Thanksgiving. Yep, I'm a Mad Mom with a busted ankle but I can still go about my mad ways! I'm trying to avoid the story because it's really complicated, long and has nothing to do with writing about Alano. Then I had to take back these words and realize that yes, it has EVERYTHING to do with not just me & Alano but with Legend & Travis as well. The fact that my injury happened a month after Alano's diagnosis wasn't just coincidence, it was nothing short of a miraculous blessing in disguise. To try to keep it short and sweet, there was no accident, no fall of any kind, it was purely spontaneous and the last unexpected thing to happen ever in my life. In a month's time (May '09), I started with a dull pain around my ankle, which progressed to limping everyday as the pain got worse to having an inverted right foot with a cane for support. After realizing it wasn't an ordinary flare of arthritis, I saw the following people in order: my PCP, an orthopedist (who I learned later didn't specialize in foot/ankle injuries), a podiatrist (who put me in a cast for a month so he avoided the operation...THANK GOD!), another orthopedist whose specialty is the foot & ankle and a new rheumatologist. This period lasted from mid-June to September, with multiple x-rays and two MRIs thrown in. I had a spontaneous rupture of a tendon and two ligaments in my right ankle, from what you won't believe when you read this...symptoms of prednisone withdrawal. It struck me not once, but twice...first my esophagus last year and now my ankle. This is a horrific thing to really get into but the best thing I can do is post a link to a website that has at least 1,500 stories similar to mine and WORSE. Go to Medications.com to read as many stories as you can to get the jist of it. I do have an autoimmune disorder called mixed connective tissue disorder (MCTD) which includes lupus, rheumatoid arthritis & scleroderma. I've been suffering for the past 15 years or so, very slowly and subtly, with only joint aches and pains as my main culprit. But emotionally, my extreme weight loss and difficulty in gaining the pounds back is what affected me the most. Two pregnancies later and the discovery of my savior med low dose naltrexone (LDN), I am much better than I have been in years BUT this ankle issue is killing me...and baffling the hell out of my doctors. The end result is that the foot/ankle orthopedist wants to do foot fusion surgery, not the simple cut the tendon/ligament loose and resew them again surgery I expected. My right foot is so inverted at this point that I have no choice but to get the metal screws in and get my foot straight again. I am absolutely scared but relieved at the same time. So I'll be casted up and homebound until well into 2010...and that is fine by me (for now). I just hope to be able to walk on my own again, pick Legend up from school, pick Alano up to simply carry & comfort him, to take the train or bus anywhere I need to go by myself, to be ME again.

Alano's biomedical treatment will finally start as early as next week at the Path Family Center (PFC). We will sign up to become official members at the center when we attend the meeting of the Staten Island chapter of the National Autism Association (NAA) this coming Thursday night, which will be held monthly there as well. Starting next week, we have a schedule of seven classes to go to that will involve multiple trips to Staten Island in the course of two weeks. The orientation last month was such an eye opener, the newly built, three story center was incredibly beautiful just on its own! There was an immediate sense of comfort, like I was meant to be there. After seeing the PFC team each speak their stories of how they were led to become a part of the center, I was like a balloon filled with tears, ready to burst but I kept calm. I was inspired most by Elisa Moller, a nurse at PFC who became one solely to help her son continue in his recovery of a long battle with autism and to help other families do the same. She went through the ordeal almost ten years ago, a time that I couldn't fathom thinking that ASD (autism spectrum disorder) existed at that time. Travis and I left that night, after meeting Carla the nutritionist & Katherine the ABA/Special Education teacher, two wonderful ladies, with the feeling that this is where we belong as a family. The trip and toll to drive over the Verazanno Bridge multiple times will be daunting but we have to do it! It is embarrasing to complain about a mere $10 toll but it adds up and having to leave the boys with my mom is a lot for her as well. Let me just say, as I have said countless times before how blessed we are to have my mother in the apartment right underneath us! I can't get over it. God does absolute wonders for us! After the classes are done & lab tests are prepared and sent out, I hope to be able to make the trip, cast or no cast, to have the consults with the PFC team for Alano's lab results. Then comes the three month protocol which will be something to look forward to.

I sure make everything sound easy in this blog, don't I lol??!!

AAAAAAAAAAARRRRRRRRRRRRGGGGGGGGGGGHHH!!!!

THERE!!! I'm freakin' out of my mind but I hide it VERY WELL!!! Writing is a cherished outlet of mine, whether by keyboard or by pen so this is therapy for me! It's going to be a tough road for me but also for my little "pollo" but we'll make it together, with the help of Travis & my mom...and Legend too. Legend made my heart smile the other day when I was wracking my brain over the class schedule from PFC. He came over and was curious about what I was doing. When he found out it was "for Alano's therapy", he went to get a piece of paper and started to draw out what looked like a chart. He then wrote these scrambled up words that looked like the exact chart I write in Alano's Food, Mood & Poop Diary. He saw it once a while ago but was so impressed by it that he remembered what went where! Then he grabs my schedule sheet and proceeded to draw two cute figures, Alano & himself, holding hands and then asked me to write above the figures "Alano & Legend Best Friends Forever". It was just one of those beautiful moments when you can't believe that a five year old understands and is able to express their true feelings 8-D! Alano is doing okay so far with the ABA therapy that started last week but he then got really sick with 102 degree fever for two days and ended up with chest congestion...and so did Ledge. He's still irritable as of today but hopefully he will be able to get through his normal 15 hours of therapy this week...and for the next year of his life!

I leave you with a five minute video that we shot of Alano at the end of September. This is to show how delayed he is with language. He really tries hard to speak as you can tell and it's been like this for the past year. It's so funny when you see him hesitate for a second and looks directly at the camera, as if he knows he's being filmed! Then you'll see a weak imitation of me trying to be the screaming chocolate character from his favorite Spongebob episode lol! The next time we do another film is at the end of the year, hopefully we'll see a difference in him 8-).

ALANO - 9/29/09

2009-11-02T17:37:00.001-08:00

When An Offer To Help Becomes A Gift of A Lifetime

2009-10-11T16:06:00.000-07:00

Tomorrow is Alano's birthday! Two years really flew by but so much has happened in such a short amount of time. The transition from a working to stay-at-home mom, the adjustment of raising a toddler and newborn, the nine month long search for an apartment near Legend's school, his first time in pre-kindergarten, the big move "back" to the building I grew up in (with my parents living downstairs from us) and then the diagnosis that altered the course of our lives (including the decision to leave my 16 week business class after eight weeks) and the ankle injury that came out of nowhere. Then Legend having to start kindergarten in another school as well as preparing for longer hours of extra therapy for Alano was a trip for us. I don't know how we did it by we sure pulled through it all. It's not just the events we're dealing with, it's whether we change or stay the same, after all is said and done, that matters. My family and I are a lot stronger than we thought so far...*whew* thank God!

Then came the second week of posting daily requests for help with Alano's microloan on Facebook and Twitter. It was daunting to ask friends, family members and strangers alike to chip in a few dollars for his loan everyday but I had to try. It was even more difficult when admittedly, I expected to get a huge response from my own family over everyone else and it didn't happen right away. Seeing Alano's post about having an autism spectrum disorder and needing money to get biomedical treatment must've been overwhelming and awkward for some I'm sure. Others could've just missed the posts by simply not being on the websites as often. Maybe no one knows what a microloan is and didn't understand what "making a loan" means. Then there's the thought of putting in a $5 loan that makes them think they're being cheap and therefore won't do it at all. I can understand all those feelings because I've been there myself! I have a hard time giving money to charity because I always feel like I have to give something substantial like $50 or so to feel like I gave SOMETHING but in actuality, I can't freely give that much unless it hits me personally in some way. In this case, I do personally know someone other than my son who has autism. I have known him for a long time. He's my husband Travis's first cousin Peter. Since I met him when he was in his pre-teens almost 15 years ago, I honestly have not sat down and had a conversation with him but I would try to say a few words here and there. Now imagine that back in the mid 90s, I had no clue about autism, as well as the rest of the world, it seemed at that time. When I found out Peter had autism, I didn't know what to say and how to act around him. I just knew that he didn't speak much and was to himself at every family gathering I've been to. I never stopped to think about what autism was and what he was going through all these years. Now I look down at my ankle and wonder wow, I can't believe it took an injury to discover this life that he had to live as a child growing up with autism. The only one in a large family but was surrounded by people who love him regardless. Now that he's in his mid 20s, he is independent and out on his own. Now I have so many questions for him and I'm curious to know his story. I don't know if my husband's family sees the connection. I only know for now that Alano is going to get all the help I can possibly give him so he too can grow up to be independent, just like his second cousin. After a few great lenders chipped in, I got an email from a friend who offered to help. This was not just making a loan, this was an offer to raise the funds in FULL! After that, my jaw was hung open for two weeks straight and my heart became swollen with hope but also fear of how I was going to repay this person. Of all the people who I met and have known all my life, I never expected someone who I knew briefly in high school to do what he did. Immediately when I got on Facebook, I remembered seeing his profile and saying what's up. I thought of that picture in my high school yearbook of the both of us standing together outside the school with another friend when the picture was taken. I had to make fun of his balding head right off the bat! He smacks back with "that's what happens when you have three kids!". I remember being amazed that he turned out to be a family guy with a lovely wife and three beautiful children. Then he offers to collect a donation from each of his co-workers at his job, a deed he has done a few times for his friends in the past. It was really hard to believe it at first and I felt awkward since we haven't seen or spoken to each other since that day we got our picture together over 17 years ago!! But he was on a mission and as much as I tried to, I couldn't say no. I just said do what you can and I will be so thankful for it. Two weeks later, he collected over a $1,000!!! Then he puts in a chunk of his own money since he felt bad that he couldn't get the full $1,500! I was ready to faint over the phone when he told me. Travis was speechless about the whole situation. We knew that God was at work on this man, just like He was with our apartment, just like He was with my injury, just like He always has in our lives. I am so grateful, so thankful, so moved by my friend Enzo's generosity and selfless effort to do what he did for my son. When we met in person this past week, it was as if we've hung out together so many times, especially for our boys! His two younger boys (he has a daughter who's the oldest) were close in age with my boys and they all hit it off like cousins! They were wild and got us all crazy that night but they had a blast! They also have a cute dog that Alano loved to play with! His feeling from all this is that he was truly blessed to have three healthy children and that his heart would give out when he hears of friends with children who are suffering in some way and tries to help out in any way he could. As for the rest of the money, my brother-in-law Michael practically swooped in to give us the rest! He is such a blessing for that! He could relate since his nine year old daughter (from his first marriage) was once diagnosed with PDD as well and through early intervention, she was able to speak finally and didn't need further treatment!

If it weren't for Facebook, yes I will be forever grateful for this website! If it weren't for Lend4Health once again, I will always thank them 100 times over, but mostly if it weren't for a friend like Enzo, Alano wouldn't be able to get the full biomedical treatment right away and it would've been delayed for a long time. Friends like this are a keeper! I am honored to have him and his family as a part of our family, for LIFE!

Much love to you always Enzo!

To update on who Alano will get the biomedical treatment from, I decided to change DAN doctors, thanks to my Rescue Angel friend Beth once again (who I MUST meet in person really soon)! Unfortunately, Elaine Hardy in New Jersey is too far away. The new doctor and NEW center will be in Staten Island which is only a half hour from where I live! His name is Dr. Michael Gabriel of Gabriel Pediatrics. He actually had built and recently opened up a center for children under the spectrum disorder called the Path Family Center. It will have so many things going on like classes, meetings and get togethers with other local families, a sensory gym, a hyperbaric chamber and much more. Alano will not only be seeing Dr. Gabriel but also a nutritionist, nurse and a teacher in the ABA/ special education field. They will all be a part of his treatment, all under the DAN protocol. I look forward to going to the orientation next week!

Legend's turning five this Wednesday so we got two cakes in two days, one that may have to be gluten-free casein-free (if I can get the ingredients tomorrow!) and then about three dozen cupcakes to bake for Legend's class the next day 8-P! I decided to do a Halloween theme for their combo birthday party coming up on the 24th. It will be small and in my apartment with just the immediate family. I wish I can invite everyone I know with their kids and have it at some party space for rent but the food, decorations and costumes is the most we can do. It will be fun to see them dressed with their few cousins coming over. I also have my costume planned as well...you shall see! I will have pictures to show in my next post.

Happy second birthday to my special little guy! And to my big five year old boy too!

Thank you Lord for making every word in this post possible to write, AMEN!

Make a Loan for Alano Right in My Blog!

2009-09-19T20:26:00.000-07:00

Thanks to Tori, I am able to post the ChipIn widget below from Alano's profile. You can make a loan directly by clicking on the ChipIn button below, which will bring you to the secure Paypal website. Then you can pay by credit card with or without an account. It's that easy! Remember, no amount is too small! Thank you :-D.

2009-09-19T20:20:00.000-07:00

A Great Big Thank You to Generation Rescue, Lend4Health & Spongebob :-)

2009-09-19T00:52:00.000-07:00

It's been a month too long! I had to post a picture of Alano and his new haircut given by his "Titi" Tania just over a week ago. Look at those cheeks! That smile lights me up everyday!

I was doing a lot of researching and waiting the past few weeks.
I finally found the right DAN! doctor and got an appointment in November. Unfortunately, she is almost two hours away in New Jersey but I think she will be worth it! Her name is Elaine Hardy from Holistic Family HealthCare based in Hackettstown. She's a nurse practitioner who follows the Defeat Autism Now! (DAN!) approach to biomedical treatment. I was recommended to see her by a great friend, a Generation Rescue Angel from GenerationRescue.org. Her name is Beth, another Bensonhurst, Brooklyn girl like myself! This Rescue Angel program is such a blessing and finding her out of all the people listed nearby was just meant to be. We've connected on Facebook and now I get to share information with her as well as all the other "biomed" moms in her community! I have to say thank you Beth in this blog for being a great friend and an "Angel" in Alano's life! We shall meet very soon!

The waiting part was for Lend4Health, an incredibly wonderful non profit started by Tori Tuncan. Alano's profile is now posted along with sixteen other children, who are all under the autism spectrum or related disorder, to have the opportunity to obtain a microloan for funding the high costs of biomedical treatment through a community of friends, family members and just about anyone who can lend a hand to help a child on their way to recovery! I was so happy to see Alano's profile and now it's a matter of hope that he will get the funds he needs. Please CLICK HERE to see his profile and give whatever you can! You can do it through Paypal via the ChipIn widget posted or pay by credit card without an account. Donations/gifts can be given too so please contact Tori for more info or email me. I do encourage making a loan instead since you will be repaid. Then it can be passed along to another child in need and it just keeps on giving that way. If you check out the breakdown of how much the appointments are, the lab tests needed and other things like supplements, etc., you would be able to understand the frustration I feel about the health insurance industry and why autism cannot be covered like most other disorders. This is just the beginning...

Hmm so how does Spongebob relate to all of this? A beautiful story happened over a week ago that involved Alano, an episode about selling chocolate bars and the window that opened up and let in a flood of emotions for me and my husband Travis. I was sitting on the couch in the living room while I was watching Alano play with his cars on the coffee table. Travis was in the kitchen and Legend was in his bedroom at the time. We just watched the Spongebob episode called Chocolate with Nuts, one of my favorites! I am flabbergasted to this day that I would even say those words lol! The character whose home Spongebob and Patrick first go to as door-to-door chocolate bar salesmen opens the door to hear that they're selling chocolate bars. He repeats it quietly and then screams it out loud, to the point of being tortured by the word, and runs after them throughout the whole show! Alano is so intrigued by this guy and cracks up when he sees him everytime! I can imitate the way he screams but softly of course. So it's just me and him in the living room and I started to have a little fun with him by screaming like the crazy chocolate guy. I did it like five or six times and each time, Alano had this huge smile, like the one in his pic above, and knew exactly what I was trying to do! I pretended to go after him and he was laughing. Then he comes over to the couch and starts climbing up to sit down. He was not facing me which killed me soon after but then it was quiet and the moment came: "Choc-o-lit"! The exact syllables came so sweet and softly out of his mouth that my jaw dropped in awe! WAS THAT YOU ALANO??!! I then screamed, "Trav, did you hear that?!!" and he did because it was one of those 10 second you could hear a pin drop moments of silence that was God-given to Alano to be able to say a hard, triple syllable word! Out came the waterfall from my eyes and Travis ran over to praise him, smiling from ear to ear. Legend came over and was amazed too! We couldn't get him to say it again, like at all that day but it was truly an open window that gave us such hope for things to come. The achoos after sneezing are no doubt a constant joy since that is the only phrase he would repeat at least three times or more after we say it to him! Thank you Spongebob and thank God for chocolate lol!!

Alano had his second evaluation last Friday and was officially diagnosed with PDD-NOS. He did improve in many areas but he really needs a lot more therapy. Soon he will have an ABA as well as doubled time in speech, special instruction and continued occupational therapy. It's going to be a trip next month and a long year for him. Worries of sending him to a school next year when he turns three are lingering but I can only deal with the present for now. I have my own physical therapy to attend to next week so it's a lot to juggle right now. With Legend being in kindergarten for six hours a day, I can tell Alano misses having him around. Summer was a great time for him but now that fall and winter are here, it will be nothing but therapy everyday and hopefully sometime outdoors for him and my 4 1/2 year old nephew Danny, who my mother takes care of and brings to school three times a week so he's around to play with him more so than Legend, even if he doesn't have the same patience that Legend does. So in between thearpy, it's just me and him and I enjoy every minute of it. Along with Travis being home twice a week and my mother coming up almost everyday to help clean, cook and take her grandkids out, I couldn't ask for a better support system in my life!

'Til next time, I will write with an update about Alano's microloan and how I will be celebrating his second birthday and Legend's fifth birthday too *sigh*! God bless!

Alano: From "Another Ledge" To A Personality All His Own

2009-08-16T13:10:00.000-07:00

On the left is Alano, just taken yesterday. He turned 22 months old this past Wednesday. The pic above is from our Virginia Beach vacation taken back in May. Legend is two months shy of turning five in October. Alano and Legend were born two days apart, the 12th and 14th in that order. We didn't plan it that way, that's for sure! Obviously, the combo parties will be a part of their lives up to maybe when Legend is about eight years old and Alano is five, if I'm lucky! But I do wish I can throw separate parties for them, especially Alano. God knows that is just the beginning of our financial woes when it comes to raising two children.

Alano came into the picture at a rough time in our lives, mainly for my sister who was going through a divorce, with her son Danny in tow, that wreaked havoc for each of us. I was working at my last job while my mother was taking care of both Legend and Danny, who were only three months apart. As soon as I found out I was pregnant, I was ecstatic but my family struggled to be happy. Both my parents and in-laws reminded us how financially distraught we were and that another baby is just crazy to have. Travis and I were in awe, still fresh with memories of our Paris trip in January of 2007. We didn't care but at the same time, I felt a pull in my heart from the thought of how a second pregnancy didn't make everyone as happy as it did with the first. But as the months came and went, everyone was anticipating for the big news, whether it's a he or she. Travis and I were of course hoping for a girl but another boy would be great for Legend to grow up with. Soon after, the name Alano sat on everyone's lips, strange to some but all in all, it had to be different like Legend! The idea of my parents having three daughters and then three grandsons was a thrill for them! I was like YES, HAND-ME-DOWNS lol!! And room-sharing! And it was just my mission to help them become best friends, like two peas in a pod. Finally, when Alano came into the world, the moment we met was a vision that I will never forget. Legend's doctor was different from Alano's. As soon as Legend came out, he was cleaned up right away and had to be weighed, a pretty good 3-4 minutes before I got to hold him. Alano's doctor was au naturale with him! As soon as the little guy popped out, she placed him on my belly, feeling clammy and warm on my skin, and he happen to be busy ballin' out loud until he got quiet from the sound of my voice, just as his left hand happen to grab hold of my left arm, his first grip on me. He had the expression of awe and wonder as I kept saying "Oh my God!" over and over. What a picture that was! It was amazing.

For months after, everyone would say, "He looks just like Legend! It's a mini Ledge!" Alano sure did look like him but by the time he turned one, the hair as well as a few facial features turned out to be the opposite. Legend inherited a lighter version of my dark curls and Alano got Trav's straight dark hair. As for the milestones, Alano met them all, at the same time as Legend. The only thing that we started to notice was how "mama" and "dada" seemed to come out of his mouth only once in a while. But we didn't think it was a big deal then. Then came the move to the new apartment we're in now. It was an adjustment for the boys since they had a hard time sleeping in their new room. Alano was getting over yet another cold & cough case, for which he was given Albuterol through a nebulizer. It was his third time this year. No ear infections but then we found out much later that he had mild cases of it by the ENT doctor. When it came to breastfeeding, I supplemented with formula for the both of them. I only lasted four months with Alano and almost six with Legend. I remember how much more difficult it was for Alano since he wouldn't feed as often. I've had breakdowns a few times and would give him formula instead when it was time for nursing. I gave them both soy formula since they couldn't tolerate the milk version. What a mistake that was but I can't beat myself up for it. Alano was all in all a boy growing big and strong, just like his big bro. He fell in love with cars just like any boy would. He watched all the same Noggin & Nick Jr. shows. They were growing up together so well. Sure Legend had his peeves like Alano touching his toys but he loved his little brother and would always be a great helper when I needed him! I remember when Travis & Legend came to the hospital to see us the day after Alano was born. It was Legend's first time meeting him and it was just the four of us in the room, while I had the window side with the grand view of the East River and a nice seating area for them. It took a while for then three year old Legend to come in to the room. As soon as he got comfortable, he finally sat on the ledge and would look over at Alano sleeping peacefully in his bed. He was scared but so curious to see what came out of Momma's belly. Now, the two of them dance together, play cars together and give each other the sweetest hugs, when Legend feels like it of course!

Who would've thought in a year's time that I would have three therapists come over every week to see him and put him on a gluten-free, casein-free diet for the almost a month now.
I couldn't fathom to spend the amount of money that is necessary for a DAN (Defeat Autism Now) doctor, biomedical treatments, supplements and so forth! And worst of all,if someone told me that my son Alano would not be able to say I love you when he's two years old, it would've killed me.

Now I'm out for the kill of this disorder!

Sure it's harsh to say kill but it's a war with the parents and Travis and I intend to fight hard and fight to the finish! The GFCF diet so far is taking a killin' on our wallets and it is so difficult to make three tasteful meals a day for this kid but we're 90% there. Alano surprisingly loves it and so does Legend! The rice & almond milk, GFCF versions of Honey Nut Cheerios and Rice Krispies, cookies, granola bars and muffins that taste like cardboard have all been agreeable. The brown rice bread with dairy-free butter or gluten-free jelly is great too, even with gluten-free peanut butter. But we do throw in soy yogurt which coud be a no-no but for now, he likes them all. At this age, Alano is a big eater as it is so it's easy to feed him new things since he never rejects anything. Gone are the days of pizza, Mickey Dees (McDonald's lol), ice-cream, eggs, farina and my mom's rice pudding. The adjustment took a toll on us more so than it did for him, thank God. We just have to keep persevering until he's 100%. As for supplements, I give him his liquid multi-vitamin and a scoop of probiotic powder daily. A small drop of liquid B-12 w/folic acid is added too but this is all guesswork really. Alano may need so much more and we can't find out until we have him tested in what's called biomedical intervention. From his urine and stool to his blood, we can find out about every allergy to food and otherwise, every vitamin he's missing, down to the GI tract and the good vs. bad bacteria balance that is needed. So much more and only with a doctor who most likely won't take insurance. God, to able to win the lotto right about now would be a dream...

*SIGH*...this is a trip in itself. But on the same token, watching Alano grow and thrive seems to help us forget he has PDD. Yes, he's got the stimming behavior, the "I don't hear you calling me but I do" response to his name, the tip-toe walks, the occasional spinning, the cluck-cluck dance he does while he holds his bottom lip in with his teeth to give the lucky person the best nuzzley kiss anyone has ever seen! Yes, he may be immature in his behavior with toys and slow to learn but I love my little "pollo" (Spanish for chicken) just the same!! And to think I nicknamed him pollo right when he was diagnosed. Then he performs the dance and Travis and I smiled and couldn't believe he was acting like one lol! Legend knows his "brain doesn't feel good" so he understands why the therapists come over everyday and he doesn't talk yet. YET IS KEY because it's a sign of things to come...his voice first and foremost. I pray to God that Alano has a chance just like Jenny McCarthy's son Evan had a chance to recover. I love my son's "quirks" and babbles and almost-sounds-like-a-word chatter but I will love it even more to let them go for a simple "Momma, I love you".

Hopefully I will write next time with news of a new DAN doctor and a chance to raise some money to afford to pay for the appointment by doing Ebay...if possible! Thank you for reading :-).

When Alano Was 18 Months Old: My Heart Already Knew...

2009-08-07T10:14:00.000-07:00

Hello all. This is my second blog as part of a "madmom" series of blogs that will conjunct one day into a website. You can find my first blog here at http://www.madmomaboutbrooklyn.blogspot.com.

Where do I start? Writing almost four months later from that fateful day is disheartening. It was a day of shock and an overwhelming feeling of helplessness. It was the day that my youngest son Alano was evaluated by a team of therapists and a psychologist here in our apartment. Two days after he turned 18 months old, they unofficially diagnosed him with PDD, pervasive developmental disorder. First thought was of my health history. The autoimmune disorders I have from half a lifetime ago and I'm thinking that although it didn't affect my first son Legend, I was horrified by the thought of Alano getting sick because of me. My husband Travis was in disbelief as well. All we could do is nod our heads quietly and accept what they said. According to the evaluation, Alano's overall behavior and thought process was that of a 10 month old. Plus the very reason we told his pediatrician what our main concern was from Alano's last checkup: the fact that he hasn't spoken any words yet. He sure babbles a lot but even momma and daddy came and went from him when he turned one last October. We probably heard it from him less than a handful of times since then, but not directly to Travis or myself.

I already knew in my heart that he needed help. There seems to be like a barricade, more than one, of some kind in the brain that is preventing Alano from maturing with each month and trying to speak but will only utter to us sounds deep within his throat and hand gesture along like he really has something important to say! I also thought okay, maybe it's too soon to tell. He needs more time. Maybe we'll wait until he turns two. But when I brought it up to his pediatrician at his 18 month well visit, she didn't waste no time and gave us two agencies to call right away. The agency applauded our efforts to contact them at just the right time in Alano's life, at the earliest age possible. They told us that a lot of parents would've waited until their chidren were like two or even three years old! Some pediatricians don't advise the parents to have their children evaluated until that time. It's the craziest thing to think that I just happen to mention it but not wondering how serious it really was. I think back now about the idea of taking advantage of the early intervention program as the greatest thing we ever did for him. Not only is it free until Alano turns three but they come to our home at the time that's convenient for us. We have a speech therapist, special instructor and an occupational therapist that had to all be approved by the city for a specific block of time and days in the week. It is truly a blessing, but it wasn't easy in the beginning. The way God makes things work in your life, the way He lines the events together and although they can be unrelated to each other, they will intertwine and bring in a hurricane of sudden changes and emotional confusion much like it did in my family.

After Alano's diagnosis, which by the way will be official by the end of this month, it was not written in stone until the three month trial of therapies was over. According to his therapists, they will recommend more time with him as well as adding an ABA (applied behavioral analysis) teacher which I found out to be the best of the best therapy Alano can get. As for the occupational therapist, I actually didn't have one for two months since I had to replace this really nice woman who unfortunately had a block of time that was only during Alano's nap time. The process to find a new one was horrendously long and tedious! Finally, a new therapist will be here next week but will not be part of the trial. Alano has been such a trooper and actually loves having them over. He goes to his chair by the table in his room and sits there as soon as they show up! It's like being homeschooled which I can only guess what that's like. But he does have his bad days when he's not in the mood or doesn't get his way. I secretly have the monitor on to listen in on the sessions and he can get wicked with his anger lol! So far, it has helped him tremendously in a short period of time. Just the other day, Travis and I were trying to get him to say balloon while he was walking around the living room, holding a balloon by his cheek. He looked at us and actually blurted out "dadoo"! We flipped out with happiness! He wouldn't say it again but he had that window open and we got him at just the right moment.

As for the hurricane of sudden changes thing, I got a direct hit by the eye so to speak. Right when therapy started for Alano at the end of May, I was suffering from a painful and twisted right ankle. The two therapists would always wonder what's going on with me with the cane I had to hobble around with. I for one didn't even know myself since I didn't fall off anything or tripped anywhere since the pain started a few weeks prior. By mid-June, I was told via an MRI by an orthopedist that I had torn tendons and ligaments. Talk about spontaneous injury! God found a way to keep me home, casted for a month, having it removed at the end of July only to find my foot was frozen in an inverted position and not knowing if it was healed. A two and half month ordeal that I used by surfing the massive waves that is the internet, the only way I stayed connected to the outside world, to research about PDD and autism. All the information I found about the GFCF (gluten-free, casein-free) diet, biomedical treatments, the story about Jenny McCarthy's son Evan, her website Generation Rescue and the Angels who volunteer to become the best help ever and the dedicated doctors of DAN! (Defeat Autism Now!), my heart was racing and my eyes were ready to give out amost every night when I read something new and encouraging about children recovering-YES RECOVERING-from the horrible beast that is called autism! That it's possible to hear Alano speak one day, to go to public school like his big brother, to be able to express himself freely and become independent. Travis and I thought how else could we have known about all this if it weren't for my broken foot? I didn't know an inkling about autism before I realized Alano was taking too long to speak. I heard about Jenny McCarthy's plight to save her son all over the news and magazines for years but never actually paid attention until I got her latest book, Healing And Preventing Autism. I also got another book called Children With Starving Brains by Dr. Jaquelyn McCandless, a woman who specialized in the psychiatry and neurology of women's issues and sexuality, then became an advocate for children with autism when her granddaughter was diagnosed with the disorder.

I will continue to write about my precious little boy, how his big brother Legend is dealing with it, the GFCF diet we implemented, the downside of the high costs of biomedical treatments and health insurance not covering any of it. As for my foot, the saga continues with seeing a new orthopedist next week and hoping to finally get some answers. For more about my foot story, please go to the link of my other madmom blog which is in the beginning of this post. Thank you for taking the time to read this! Hopefully, you will bookmark it, leave any comments if you like and come back for updates about Alano's road to a hopeful recovery. If you know someone with autism or don't know what it's about, please bookmark and tell them about the following websites below. It contains all you can possibly learn about the disorder and how to get help for your child and for your family! God bless!

http://www.autism.com (Defeat Autism Now!)
http://www.generationrescue.org (Jenny McCarthy's organization)
http://www.talkingaboutcuringautism.org (TACA)
http://www.starvingbrains.com (Jaquelyn McCandless, MD)