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

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...

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)