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)
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