Inclusion Opportunities

Today Diego participated in the 4th grade Field Trip to the Symphony Orchestra Concert with his 4th grade peers, not only from his school, but from several schools in the area. He had a very good time and enjoyed his field trip, bus ride included.

I want to see today's experience multiplied as many times as possible.

Kids with special needs are just as part of our community as you and me. Even though in some instances it's nice to have special events for our special kids, the truth is that all events should be able to accommodate the participation of everyone in the community, including our special needs population.

In some instances it can be more complicated than others, but they deserve it and we owe it to them.

I'm very happy to say that I am chair of the Parent Liason Committee at our district's Special Education Parent Advisory Council. Our main goals are to raise awareness and promote inclusion. I have so many plans in my head and I'm sure they will come true.

As an optimist, which I'm proud to be, I know that most people just need information and a sense of awareness to realize the above mentioned. That we are all equal is in our constitution and to be treated with respect is a human right. That is why there is no doubt in my mind, that if we start creating a sense of community with our children, helping them see that we are all equal, we will have a better future.

Some children from other school who were sitting close to Diego today were very interested in "this special friend" who had a "very cool gadget" (his communication device). Even though they didn't know what autism was when I asked them, they were perfectly fine watching Diego's silly movements and wanted to know his name, his school and if he could talk.

It is our responsibility as adults, to teach our children to accept, love and care for their friends with special needs.

two new and nice pictures

Even though Diego is very used by now to have his picture taken, it's not always that we get a good picture. Diego isn't sure of how to fake a smile. I find this, very authentic in a way. I mean, he smiles when he's happy not when we put a silver object in front of his face and ask him to smile. He knows he has to do something with his face, so at first he used to close his eyes shut and tight when we asked him to pose. The results were funny pictures of Diego with his eyes closed. Then, he realized that maybe the eyes should be open, but he needs to do something with his mouth, so he started to stick out his tongue. This was a while ago and he was still young, so he looked really really cute. Now, he knows everyone say cheese and smile, so he opens his eyes really big, says cheese and shows his teeth :) Not quite a smile, but he's getting there!

These two are recent. When we took the cowboy hat one, he was being very silly and laughing at we don't know what, so he took a beautiful picture with his beautiful smile and dimples. The other one was posed and even though he said his usual "cheeeeeese", it came out pretty nice!

Diego in 2009!!

Diego is being having a great year. He is very stable, comfortable and happy all the time.

Diego just turned 10 years old, and he's almost as tall as me. I believe that last time we measured him, he was 5 feet tall! (I'm 5'3.5") I'm not going to say his weight, to respect his privacy :), but let's say he is a big boy!!

We are living in a different state now, and Diego had to go through the process of a move, new house, new school and new surroundings. This all happened last summer. After that and for the following 4 or 5 months (that felt like 4 or 5 years), Diego was in a rollercoaster ride, with some ups and many downs. I will never know for sure if all the changes were to blame, or if it was just an internal process, with the toxicity playing a role in his discomfort.

Whatever it was, it's in the past! Diego is doing great and he feels so good!! It's really a joy to watch him.
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He's using a communication device that resembles a PDA. Really cool! He uses it very efficiently and we are expanding on it very often. For example, Diego uses the device to ask to go to places and pushes the button that says "Let's go!" and then he selects where he wants to go, like "Chuck E Cheese". However, if he wants to ASK where are we going, he selects the same button. That is when, we realize that we need to keep on adding to the device!! Diego is communicating not only by expressing his wants and needs, but by asking questions!!! Maybe you don't realize it, but this is GREAT!!! He also uses it if he wants to play games, like spying colors, or if he just wants to let us know that it's raining outside!! "Rainy" :)

He's been doing great in school, and we are planning activities which are more age appropriate for him. His showing us he can take up more academically and socially, so we just need to keep up with him!!

Everyone around him is very loving. This is very important to me. See, when a child is a little toddler or a young kiddo, you just love him because he's very cute. I was always worried that as he grew older, the cute factor, that used to charm everyone around him before, would go away. Well, maybe it's because I'm the mom and I see him mom eyes, but Diego remains being as cute as always, and he shows everyone how loving and well behaved he is.

I'm very happy to have built a community of friends in our new place, where everyone include him and relate to him so naturally. Diego loves being around our friends and I even had to add a button to his device that says "Friend's House" because he loves going to visit people!

Our new goal is teaching him to type. That way he can tell us anything he wants without being limited by the buttons I program in his device. He is doing very well and I get super excited when I see him writing words in dictation!!! I guess I never realized that we could get here and do things like this already!!

I remind myself every day, that with Diego, the sky is the limit. This child has tremendous potential and he surprises me constantly with the amount of things he understands and knows.

I love you Diego. I believe in you!!!

1 in 97 children diagnosed....

Just a few days ago, the "new numbers" of the autism incidence hit the news. I was very surprised with how unemotional I was about it. I mean, it's scary..., alarming..., an epidemic! I know. But then, I think of how broad the spectrum is, and what these numbers really represent. The Autism Spectrum Disorder (ASD) is the term used now, to encompass all the different disorders including PDD and Aspergers Syndrome to mention just a couple. Well, a child with a diagnosis of PDD or Aspergers looks very different from my child.

The study goes as far as saying that 40% of the children diagnosed with ASD at an early age, loose their diagosis years later. Some wonder if they were diagnosed correctly to start with, while others point to the treatments that made it possible to recover the child.

You see, Diego has the classic form of autism, he is non verbal and to be honest, he could be the poster child of a kid with developmental delays, if you watch him stemming all day long. Diego received an early diagnosis and early intervention started even before that. We have followed all the treatments, studied the research, the latest interventions, the diets, the protocols.

I'm sure Diego has benefited tremendously from all of it. But Diego isn't even close to lose his diagnosis. Diego doesn't look like many kids with autism do.

My point is, it's hard for me to relate to the new numbers, when so many of the kids being diagnosed with the same diagnosis that my son has, don't really seem to have anything in common with him.

I believe in treatments. I believe in diets. I believe in recovery. But I have learned that as each child is different, the results of the treatment are also different.

I believe that whoever came up with the conclusion that this disorder is a SPECTRUM, was very right. The manifestations are different and the results to interventions are different.

Well, enough said about that. Let's brief you on what's going on with my little one (really, not so little anymore!!!)

2007 Update

It's been a while since we updated the blog. This time I'm going to try the "mom approach" instead when writing the posts....

GENERAL
Diego turned 8 and we celebrated his birthday in his school. He blew his candle very well and enjoyed wearing the birthday hat. He handed out birthday hats and treats to his friends and had the best time opening presents when we got home. (He had been asking for presents for a while, so he was very happy to see the presents at last!)
He has put on more pounds just by eating his rice and chips. His food variety remains the same, but we need to monitor the amount because we don't want him to be too overweight. He is so happy eating a good plate of meat, rice and beans!!
Diego is a happy boy, who enjoys tickles and still loves Barney. His interests are expanding some lately and he has shown that he likes Bob the Builder, Sesame Street, Teletubbies and instrumental music. He loves to listen to music in the car and classical music interests him also.


SCHOOL
Diego is in 2nd grade, in his same ASD class and he has a new teacher. His IEP goals are focused on his visual strenghts and he is using his communication book very successfully as well as he is learning to read many words even while he is non verbal. It's amazing!
Diego's behavior is so good. He is so obedient and a real good boy. He does wonderful in the field trips, and they have had many this semester, including Community Based trips.
The only times he shows discomfort are due to his detox process and we all support him and sooth him with rubs and kisses which he appreciates.

THERAPIES
Diego has resumed his Verbal Behavior program at home. We are using an ABA student who is doing her practicum as well as the services of a CABA who is being funded with the Medwaiver. This gives the program great dynamics and Diego is getting new goals as well as mastering existing ones constantly. He is very happy during therapy almost all of the time and is very motivated by it.
We will resume Speech Therapy in home too. This service comes and goes as the availability of therapists allows it, but is always a good addition to his overall services and we keep the goals of this therapy in harmony to the VB program and the goals at school. Diego is ONE, so we need to work as a TEAM!
He continues with RDI and guided by the lovely therapist that is in our lives, we try to make every moment and RDI moment. We feel so connected with Diego and RDI has helped so much in this!

BIOTREATMENT
Diego continues his biotreatment following the Metabolic Protocol. I believe it has been 3 years now. We have added the use of head patches with the clay from the clay baths for metal detox, and I have seen a difference. Diego seems more clear headed after the head patches. He is more aware and the most exciting thing of all, is that just this past week, he has started to imitate new sounds! This is HUGE!! Diego remained non verbal and was able to repeat only "mama", but now, new sounds are emerging and he notices it, and is so proud of himself!! We are ecstatic! receiving with optimism all these new accomplishments!
We continue with the clearings, the supplements and the detox baths.
Diego has shown improvements in his lab results and it looks like we are on our way to stabilizing his levels while getting rid of the metals. We still have a lot of work to do, but we are moving in the right direction.

Catching up to Summer 2007

Summer is almost here!

School is over and the summer school will start next week. Summer School for me is what they call ESY - Extended School Year -. It is supposed to be a continuation of my regular year in which I will continue to work in the same goals that were established for me in my most recent Individual Educational Plan (IEP). The classes will go on for 6 weeks from 8 a.m. until 12:30 p.m. ESY will be in a different school and with a different teacher - this makes it difficult because it requires an "adaptation" process - but my friends from school (plus many others) will be there and I usually "adapt" to people soon - the difficult part is for them to adapt to me, since they don't know me and don't know my likes and dislikes - but Mama will try to tell them all they need to know about me.

This first part of the year has been good for me. I finished 1st grade and did good in school. I was selected Citizen of the Month again and this time my Papa came with me to receive the award. I did very good!




I have really learned how to use the computer and absolutely love it. I don't type (yet) but with the use of the mouse, I'm able to browse my way into anything I like!. My Mama says that is how they discovered that I can READ many things, because just by looking into the google history or the favorites, I can go from one site to the next, usually of my best pal Barney the dinosaur.

Also, I am enjoying music more and more each day, but now I am humming to the melodies, which is my very special way of singing.


I have been progressing a lot in self-help skills and I'm pretty independent in many things in which I needed some assistance before like dressing, bathing and cleaning myself.



However, the most amazing progress I have made is very recent. I am using a Communication Book that my therapists and my mom created for me. It has over 300 pictures and words of the things that I use everyday to communicate. It helps me to indicate when I'm hungry, or thirsty or when I want to go out or even when I want to go to the bed. I have many pictures in my book of friends and family, so if I want to see one of them, I just point to them, and I express what I want!



Well, I am sure this summer will be LOTS of fun. Yesterday I spent over 4 hours bathing at the beach and you can see how tan I look. By the way, did you notice I'm loosing my teeth? I have 4 missing at the same time! I let my Papa take them out when they are loose - it doesn't hurt!

Easter 2007

This year's Easter celebration were very special! My aunt, uncle and my cousin Alejandro came from Puerto Rico and we spent a few days together! We went to Miami and saw many people from our family. They were very happy to see me use my communication board and to have so much fun at the pool.

Then we came back to Tampa and I enjoyed getting into the bed with my titi and tio. We celebrated my titi's birthday and my parents' anniversary. Also we took Alejandro to Universal Studios. We all had fun!

Merry Xmas and Happy New Year!

Happy Holidays!

1. First, I have to say that I was delighted to have my abu's coming to visit us this Christmas. I didn't let my abu rest for a second and I was hugging her and cuddling her every moment. I even made her get into the playground with me.
Here are some pictures of the exciting things we did.

Here we are cuddling in the bed

In this picture we are at MOSI

2. Christmas day was super exciting. I received many gifts and had a blast opening them and finding cool stuff. My mom tells everybody I was super good on Christmas eve when we went to our friends house for dinner.

3. Then, my titis and my cousins came to visit and we all spent New Year's eve and New Year's day together. We had a party at my house and everybody had fun.