All posts by Veiga

One step closer…

Photo by S&B Vonlanthen on Unsplash

Hello everyone, I know I haven’t written in a long time, but I haven’t found the time and sometimes even the strength to write. However, today I had to take a moment to update our blog. Today was one of the days we had been waiting since day one of the autism diagnosis. The day you get a call and hear “After scoring his evaluation we found out he doesn’t need more of this intervention.”

This time of the year is when Guto is due for his yearly speech therapy re-evaluation. His therapist had started his eval on Monday. We talked about his evaluation score on Wednesday and had to wait on his Montessori School teacher’s eval to finish his scoring, so I have been preparing myself for the possible final score since Wednesday.

When his therapist told me on Wednesday that he may test out of speech, a mix of emotions took over me. I was extremely happy with that possibility because it proved that everything  we were doing up to this point was apparently right and had helped our son. We have always had so much support and this would change what has become our normal. I don’t like change, especially when things are working. You don’t change a team that is winning, right? I was beyond happy to know my son was progressing so well that having speech therapy was one less thing he needed, but at the same time I got scared, and anxious.Today I got the confirmation, Gustavo officially tested out of speech. My boy is improving tremendously, and he does not need speech therapy right now. I know this may change in the future (he will be re-evaluated in 6 months), but for now I am trying to enjoy this milestone. The reality is that we live in a crazy, unpredictable and sometimes cruel world.  It scares me to think that he may not be able to express himself if something bad happens to him or if someone makes him feel worthless.
He is going to start kindergarten in August and I know how kids can be cruel. I guess I will try to worry about that whenever the time comes, but for now I will just enjoy more time with my boy, especially now that I gained an extra 120 minutes a week with him since he is not gonna be in speech therapy anymore!

 I may be a little scared about what the future holds, but I am so proud of him for all the effort, sacrifices  and progress he has made. He is truly an amazing gift!

“Success is no accident. It is hard work, perseverance, learning, studying, sacrifices and most of all, love. (Pele)”

April is Autism Awareness Month

Dear family and friends

It is amazing what time can do to our lives. This time last year I was living one of the most difficult moments of my life. It was around this time that we faced the possibility of Guto being on the autism spectrum. Until we got his first evaluation the internet was my best friend, and also my worst enemy.  It was during my search for answers and in the need of finding positive information and support that I came across some wonderful people. People that had been through what I was living, the same doubts and the same despair. They were able to comfort my heart and helped me to see beyond the A word. They helped me to see my son again. Sometimes we get stuck on the problem and we forget to look at the bigger picture. We see things in one way and with that we build a completely distorted image of a situation. And when we get in this hole it is good to have people that can help pull you out of there, shake you up and bring you back to reality.

This wonderful group of people that helped me through this difficult time got together to do more good. They started a Foundation to be able to help more people like me, more people like them, more people like our kids and I am so honored to have been invited to be a part of it. I am trilled to announce the Arkansas Autism Foundation (AAF). You can learn more about the foundation and follow our work on our facebook page HERE 

The AAF, in collaboration with Goodwill, will host its first annual Autism Festival and Walk on May 13th. As some of you may already know, we have a team in Guto’s honor, “The Sweetest Gift.” If you happen to be in Little Rock on May 13th we would love for you to join our team and come walk with us to help us raise awareness to autism.  You can donate or get a t-shirt to help our new foundation, just click HERE. You can also help by sharing with your friends about our Foundation. The more people knowing about it the better. Someone that needs help may be closer than you think!

Here is what our t-shirt looks like 🙂

Thank you so much for your support and I am hoping you can walk with us on May 13th 🙂

How do we know


These past couple of weeks have been quite emotional. I don’t know if it is because it was during these period last year that we started our journey into the Autism world.  I started questioning myself. If what I am doing is right, if I should be doing more, if I am neglecting my son somehow.  

Every individual is unique. It doesn’t matter if they are neurotypical or not. Every autistic individual respond differently to therapies, they have different progress and different limitations. I realize that the worst thing you can do is to compare you journey with others or expect things to be the way you imagined it would be. That will drive you crazy and take you to a very dark place, just like did to me. 

Thankfully I met some awesome people along this journey that brings me back to a good place. People that have been there for a long time and people like me that are still adapting. Social media is a life saver, I don’t know what I would do if I didn’t’ have the support I found through it.  

And thankfully I have good friends around me that remind me that I am doing the best that I can with the resources and knowledge that I have.  

I know I have to respect my son’s speed. The results you see depend on so many things not only on the type of therapy he receives. It is much more complicated than that. I need to keep that in mind, always. 

But how do we know what we are doing is good enough?  

Getting ready for Autism Awareness Day

World Autism Awareness Day is an internationally recognized day observed on April 2 every year, encouraging Member States of the United Nations to take measures to raise awareness about children with autism throughout the world. It was designated by the United Nations General Assembly resolution “62/139. World Autism Awareness Day”, passed in council on November 1, 2007, and adopted on December 18, 2007.

Every year, autism organizations around the world celebrate the day with unique fundraising and awareness-raising events. We couldn’t be left out of this movement, you all know how important this is to us. So we designed a very cute T-shirt to raise awareness and to show our support.

According to The Autism Society, the autism awareness ribbon is multicolored, with a puzzle pattern in different shades of red, blue and yellow. Even though blue is the color most people wear to show their support, blue is not the official color for autism. It just happens to be the color that the organization Autism Speaks choose to spread awareness through the Light it Up Blue campaign. Since a color spectrum has a range of many different colors, we believe the colors to define support and awareness to autism should be endless.

The puzzle piece is still the symbol most organizations use. Although there are some conflicting opinions on this subject, we decided to use the puzzle pieces in our campaign as we already explained our view in regards to this on a previews post.

We picked a few colors for you to choose from. Royal blue, as it is the most known color for autism awareness and because we respect the work Autism Speaks does on spreading the word about Autism and all they do for families like ours. The other colors were individual picks of my family members.

Hope you all like the color selection and the design we picked. It was done with a lot of love and hopefully will be as special to you as it is to us. Please share with your family, friends, co-workers and everyone you can think of.


Our campaign ends on March 6th and the estimated delivery is March 22nd. So you will have plenty of time to get ready. Now choose the one you like the most and get ready to show your support on April 2nd! Click here to get your T-Shirt!

Our goal is to not only raise awareness, but also raise acceptance and help to spread information in order to better educate the public at large.

Thank you in advance for your support. We could not do this without you!

The Sweetest Gift Family keeps growing!

I love when friends send us pictures with our T-shirts! I know it is not a big deal for many people, but to me it says I was thinking about you and I am here for you!

Talking about T-shirt, we are already preparing a new T-shirt for this year. You still can by our first design, just send a e-mail to info@thesweetestgift.org and let us know you are interested. Also if you have a t-shirt and haven’t sent us a picture please send it so we can add you to the family album!

So here are the latest addition to our family album with our very first T-shirt.

Curitiba-Parana-Brazil

Florida-USA


A special thanks to Rodrigo and Luciana Barranco from Magic Press. They were the ones that designed our amazing logo. We love it!!!!!

Let 2017 begin!

I know it is almost February, but since this is the first post of 2017 I need to start by saying:

HAPPY NEW YEAR!

As usual, our lives have been crazy! I got the flu the weekend before Christmas and Guto was sick for the last 2 weeks of 2016 and has had a cough and an ear infection for the past couple of weeks….. so I am still trying to get our lives back on track… Poor boy can’t get a break. So with all this going I had set the blog posting aside for a while. I never thought it would be so hard to manage all this: work, family, home and a blog.

So let’s get started and talk about what has been going on and what we have already planned for this year…

We spent 2 weeks at home sick (Guto and I) and that was horrible. We were both miserable. During the time I had the flu, Guto had a different kind of virus, he wouldn’t keep anything down, so now my picky eater is even pickier. I can count on one hand what he has been eating lately. We have been working with his OT to improve his eating and we are having new goals set for speech since he met all the ones they had set on the last evaluation.

With the holidays and him being sick we haven’t had much therapy time the last few weeks, and I can definitely tell it is affecting him. His behavior has been much more aggressive lately, he gets frustrated more easily and has screamed a lot more when asking for things instead of trying to use the words he knows or taking us and pointing to what he wants like he usually does. It is so frustrating.

He should start “school” in August, which will be great because he will be getting more therapy time. We are also on the waiting list for the autism waiver, which will provide him ABA therapy. I really hope it won’t take much longer for us to get this. I read wonderful things about this type of therapy, even thought the videos I watched were a little disturbing to me.

There is so much awaiting us in 2017. I want to learn more about autism. I want to be able to bring not just awareness about it, but acceptance as well and I believe the only way to do that is to have as much information about the disorder as I possible.

I guess this is all for now. I don’t think I have said this before, but thank you for reading this blog and keeping us in your thoughts and prayers.

May 2017 be a year of learning, inner peace, acceptance, joy, and most of all love! May we learn not to take for granted the little things we have, which may be the most important. May we be surrounded by family and friends and may we make more friends along the way. All the best to all of you!

Let the year 2017 begin!

Image source: Unsplash

2016 in review

As I sit here trying to recover from this Influenza that took over my body, and watch my sick little one, who has a different virus than mine, using his energy to keep jumping, I try to go back and put into words how this year was to me.

I can say without a doubt that 2016 was one of the hardest years of my life. I know I’ve been through some dificult times before this year, divorce, moving to another country, broken heart, fertility issues and treatment, miscarriage… and the list goes on and on, but nothing compares to that moment when you realize your child has a diagnose that could potentially interfere with his life forever and not only that, the struggle in getting the help he needs in order to have a more normal life. Perhaps even harder than the diagnose itself, was the burocracy and sometimes the lack of compassion from others. Nothing makes you feel more hopeless than looking for help and just getting obstacles, things that are completely out of your control, and there is nothing you can do besides wait and hope for things to work out in your favor.

Although there were a lot of hard times following Guto’s diagnose, there was a lot of learning as well and I think that’s what 2016 was all about: LEARNING

This year has taught me a lot. PATIENCE is for sure the number one lesson of 2016. Me, a person that hates waiting, really had to learn to do just that! However, the rewards were completely worth the wait. The first time Guto said mamae, or I love you, or gave me a hug willingly. I would have waited for all this forever if I had to, but I sure am glad I didn’t have to wait that long.

I learned a lot about myself, I learned that I can be stronger than I ever thought I could. Learning what a mother is capable of doing for her child. I learned so much about people… about frienship, loyalty, respect… some in a good way… some not. I learned about priorities and learned about AUTISM, though I know I still have a lot to learn.

I learned that crying is not a sign of weakness, but a sign of strenght. I learned that sad cry is as important as a joyful cry and sometimes it is the only thing you can do to keep you sane. I learned that getting overwhelmed or tired doesn’t make me a bad mom. And that it is ok to ask for help even though it is not always that you will find someone willing to help you out and sometimes you just have to suck it up and keep going.

I learned that expectation is what really makes you frustated, and sad. The smallest achievements are sometimes the greatest and all of them should be celebrated.

And I learned more about love. Love that cannot be measured. Love that has no words. Unconditional, pure love.

So looking back at 2016, althought it was a a year with some great challenges it also had a tremendous amount of joy and happiness. And that’s what I will be wishing for 2017, that even with all the hardships we might have to endure, we will never forget to count our blessings. I feel so blessed for being Guto’s mom. Our family is blessed for having such an awesome boy we can call ours. Just watching him jump and smile close to me makes me realize just how perfect he is.

May your holidays be full with blessings and may you heart be full with love and peace. From my family to yours.

It is gonna be OK

It is amazing how God works in our lives and puts people on our path without us noticing. A few years ago, I met Luciana, whose daughter is autistic, on Facebook when she sent a message to a group of Brazilians that live in Arkansas. She was trying to get her daughter an appointment at the Autism Clinic at the hospital I work. Some of the people I know replied to her in an effort to help, and of course I did as well. She told me a little bit about her daughter and how great the doctors were there and that she really wanted to bring her little girl here, but the waiting period for and appointment was extremely long and she was afraid she was not going to be able to get in. I tried to help her getting an appointment, sent e-mails, called the local phone numbers I had, and even talked to people I knew. Unfortunately, we were unable to make it happen. If I had only known God was crossing our paths to prepare me for what was yet to come.

A couple of years passed by and then, here I was, my turn to be desperate and looking for answers. One of the first persons that crossed my mind when I found out about Guto’s diagnosis was Luciana. I needed to contact her again. And that’s what I did. I sent her a message and told her what was happening and how glad I was that God had put her in my life a couple of years before. She was awesome. She completely understood exactly where I was coming from since she had been through the same thing. She made me feel so much better and gave me so much hope. She told me about the things she had done and doctors and exams she had been through. And she reminded me of how lucky I was to be in a place where they had so many resources. I felt a sort of relief and a sense that “everything will be ok”. I am so thankful for her.

Last week she sent me a message and I had to ask her if I could share it with you all. It made my heart so full and I am so glad she allowed me to. Here is what she wrote me:

“Today is a very special day. It is the first stage of Larissa’s literacy graduation. (There will be two events on consecutive days). Four years and eight months ago, even in my most optimistic dreams, I could not imagine that moment. Not the way it’s happening. At that time, Larissa was diagnosed with autism. It was the same month she turned 2 years old. I can say, without fear of making a mistake, that it was the worst month of my life. But the crying didn’t last long. I had no time to cry. I had to run. Run to look for therapies, doctors, drugs, exams. Run to study, study hard. While seeking for help, I called the mother of an autistic boy who was 9 years old. I called for information, tips and clarifications. I had seen a lot on the Internet and was between optimistic, confused and mostly scared. This lady, even though she was very kind, was a bucket of cold water. She was bitter, unaccepting, apathetic. She told me something I’ll never forget: “I was once like you, but there is no way, it’s genetic like Down Syndrome, it might even improve somewhat, but it will always be the same way.” At the time, I was in shock and I just wanted to cry. Then I thought to myself “Was that it? Could anything else be done?” I listened, and listened and came to the conclusion she felt hopeless (I had not finished the call yet). She was not a bad person and was not being cruel. In her opinion, she was doing me a favor by putting my feet on the ground. When I hung up the phone, I no longer felt like crying, no anger, no pity, nothing … I did not judge. I did not suffer what she suffered, nor did I go through her problems. Who am I to judge someone? Ah … but if she only knew, if she could imagine what would happen in the future … Larissa had therapies (speech, OT and PT) 3 x per week. I decided to always be her “psychologist “, this way she would have therapy all the time. She had orthomolecular treatment, a strict diet, lots of stimulation at home with me and Bira. She scored a 71 on first assessment scale of autistic symptoms (ATEC). She has had many other evaluations done by a multidisciplinary team, but I mention this one because it is an evaluation filled out by the parents. Although she already had a few months of therapy she still scored a 71, so I’d risk saying that if we had done it before, it would have given us a higher value. 71 is a value that indicates moderate to severe autism. By this scale, those who score above 10 are already in the Autistic Spectrum. Below 10 are considered recovered from the symptoms (not cured since there is no cure for autism as far as we know). Today it is with great joy that I can tell you Larissa scored a 6 in her last ATEC evaluation! Look, it was not easy at all, it never is. It still isn’t easy today and it may never be. It is not easy for the so-called “normal”, so imagine for those who have some limitations. But I say with the conviction of one who has studied the subject for almost 5 years: autism is treatable! And looking at everything that has happened in over four years (and a lot has happened), I am thankful and always thank God. Larissa is a Greek name that means: the one that brings joy. And how happy I am to be her mother! It’s for her today that I say: Daughter, this graduation is not your greatest achievement, because you had so many in this period… But it’s such a happy moment for you and for all who love you, that we will forever keep it in our hearts.Congratulations Larissa, you deserve this diploma.”

larissa_fotor

Larissa congratulations on your victory. This is one of many to come! You have so much potential and so much to show and teach the world. You are a star! I am so proud of you!!!!!

I have no words to say how happy I was to be remembered during such a special moment. And how hopeful I am about Guto’s future. I am so thankful that, different from Luciana, I found someone that gave me hope and showed me autism may have its challenges, but it also has so many beautiful and joyful moments. I hope one day I can be to someone what Luciana has been for me. The light at the end of the tunnel, the hope needed, the optimistic side of a dark moment. I remember she told me “You will cry a lot, I still do and it is ok to cy, you need to cry. Just don’t give up and everything will be OK.” You know what, I believe her!

Echolalia

As I told you all on my last post, Guto’s vocabulary had grown quite a bit. I am not sure how much of it he really understands what he is saying and how much is just repetition. Here is some known forms of communication that usually go along with autism.

Echolalia or scripting

Echolalia/Scripting is the repetition of phrases, words or parts of words. Echolalia may be a sign of autism, another neurological condition, a visual impairment or a developmental disability. Almost all toddlers go through a stage in which they “parrot” words and phrases that they overhear. Mimicry is an efficient way to experiment with different sounds and practice emerging social language skills. This is a normal and critical stage in language development.

Immediate Echolalia/scripting
When a person repeats back something that he or she has just heard, that is immediate echolalia. For example, if a parent says, “It’s time for a bath,” the child may repeat, “Time for a bath.” It is believed that by repeating back the words, the child is demonstrating that she can hear accurately, can physically produce speech and can remember it long enough to reproduce it. The next step is comprehension of speech, which may take months or years to develop.

Delayed Echolalia/scripting
Many people like to memorize and recite “catch phrases,” or sometimes whole paragraphs – perhaps scriptural verses, inspirational or historic speeches, or funny scenes from the movies. As long as the phrases are repeated in an appropriate social context, this is a widely accepted social behavior. Delayed echolalia is the repetition of phrases after a period of time – several minutes or a year after the phrase was originally heard – and the phrases may pop up any time, any place.

Echolalia/Scripting was once thought to be non-functional, but is now understood to often serve a communicative or regulatory purpose for the child.

 

Sources:

Autism Speaks

Speech Therapy Update – 6 months

I have been writing about random things regarding Guto trying to get a picture of what his behavior is on different situations in an attempt to show how different he really is from a typical child. I have never been around any autistic person so I am trying to give everyone an idea of what it is for us, as you may not have anybody close to you in the spectrum either. Since we have started therapy 6 months ago, I think it is time for a more medical type post.

Guto started speech therapy in mid april of 2016, he was getting 60 minutes a week of therapy. Not long after he started, in mid June we went to Brazil so he was out of therapy for a month. A couple of weeks after we got back from our trip he started going to therapy for 90 minutes and got a new therapist since his initial therapist was out on maternity leave.

After only 6 months I can definitely see a gigantic progress on Guto’s communication skills. When we started therapy he had less than 5 words in his vocabulary and now here is the list of words he is saying, though some words his pronunciation is not 100%, but you can definitely understand what he is saying.

– he can count to 10 (in Portuguese and English)
– he says the colors blue, yellow, orange, black, pink and green
– he sings the ABC’s
– Mickey Mouse – Miska, Muska, Mickey Mouse 🙂
– Goofy
– Agua (water in Portuguese)
– Mais (more in Portuguese)
– Acabou (all gone in Portuguese)
– Ball and Bola
– Macarrao (pasta)
– Vovo (grandma in Portuguese)
– Thank you
– Okay
– Sapato (shoes in Portuguese)
– Tomate
– And his latest word was Mamae (mommy in Portuguese). I almost had a heart attack when he said it for the first time! <3 In therapy he is combining two words like blue ball. He is making some sounds like tchu tchu when playing with a train, or bi bi with a car. He is imitating a lot more and "singing" some songs. He is the cutest thing singing twinkle twinkle little star and he loves the Jacarelvis DVD. His eye contact is getting better with other people, I never had any issues, I never noticed poor eye contact since he always had good eye contact with me. He answers to his name (Gustavo and Guto) almost half of the time! He has been more aware of his needs. This is a big deal since he would never show signs of thirst or hunger and that really scared me as he would go hours without eating or drinking unless we offered him something. Now he will take us to the kitchen and show us what he wants to eat and say water when he wants something to drink. Everyone is very pleased with his progress so far, I am so thankful for his therapist, she has been awesome. I know a lot of people are against the use of electronics for long periods of time, but I do believe a lot of Guto's progress were also made through the videos he watches on his ipad or the TV show he likes. No doubt he spends more than 30 minutes a day (what is recommended for his age) on those kinds of activities. To me all of these small steps are amazing and every time he says a new word or does something he was not doing before is a big celebration. I can't wait to see the changes he will have in the next 6 months.