All posts by Veiga

Thank you!

I am not going to say that our journey has been easy, it is never easy receiving a diagnosis for a loved one, any kind of diagnosis, and every person copes in a different way. What may be painful to me, may not be painful for someone else. The way I handled my struggles everyday may not be the same way you would, but I am so glad that in this journey I have family and friends I can count on and that respect my way of dealing with it.

“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.” ~Albert Schweitzer

I am not sure I have thanked everyone that has supported my family through this journey. If you are reading this you are a member of “the sweetest gift family” 🙂 So here is a small gesture of gratitude to all our family and friends that have been by our side every step of the way. Some close, some from far away. We are truly blessed for having you all in our lives. THANK YOU is not enough, but it is all we have.

“Make it a habit to tell people thank you.  To express your appreciation,  sincerely and without the expectation of anything in return.  Truly appreciate those around you,  and you’ll soon find many others around you.  Truly appreciate life, and you’ll find that you have more of it.” ~ Ralph Marston

Here are some pictures of our “The Sweetest Gift Family”, because we are not just a team!!! I will update this page with pictures as we get them! By the way, you can still get a t-shirt, just send a message to info@thesweetestgift.org

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Arkansas – USA
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A week at the beach

The morning after the walk my parents, Guto and I went to Florida to enjoy a week at the beach.

Guto behaved so well the whole trip on our way to Florida, despite taking us over 5 hours to get there. We got to the hotel and got settled hoping Guto would go down for a nap, but since his schedule was all messed up the last thing he wanted to do was sleep! We ended up going for a walk on the beach and explored our surroundings. Guto played for a little while at beach and after bath he was done. He didn’t even get to see my Brazilian friend Karen, her husband and two kids, who came to visit us since they lived close by.

Guto didn’t seem to like the beach as much as he did in August when we went to Clearwater. He loves the water, but he didn’t want to stay in it for to long like he usually does. He seemed to enjoy the pool a lot more than the ocean this time. So we didn’t spend as much time at the beach as we were hoping we would. My parents and I love the beach, but Guto doesn’t, at least not as much on this particular trip.

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We didn’t mind that he didn’t want to stay on the beach, we loved seeing him having fun at the pool and that was all that mattered. My boy had a blast. Even without eating much during that week, I am not sure why his appetite was so poor, his energy level was high. We would have a full day playing on the beach and the pool and he would still have energy to jump on the bed at night and fight to go to sleep. I could tell by his eating habits and sleep patterns that his routine was definitely messed up, but he was on a good mood so we were not too worried.

On the day before our scheduled departure, hurricane Matthews arrived on the east coast of Florida. Lucky for us we were on the opposite side and we were able to go to the beach on that Thursday morning, but then we got rain and a lot of wind that night.

We had planned to spend Friday morning at the pool before getting on the plane in the end of that afternoon, but with Matthews close by we decided to change our plans and we ended up spending the day at the mall and the airport. As always, Guto surprised me having a great time just playing and running around. I thought he would get bored and be upset, but he was content just playing and running around. I could tell by the end of our trip that he was getting tired of it since his behavior started to get more aggressive, but luckily we made it home without any issues, except for a couple of bruises and a lot of good memories.

The Walk!

My parents got here at the end of September and it is always wonderful to have them around. I thought I would have tons of spare time with them being here to write the blog and catch up on things, but was I mistaken! It seems like I was even busier than ever.
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We participated for the first time in the Autism Speaks Walk a couple of days after they arrived. It turned out to be a beautiful day. I wish we had got to the Clinton Library earlier, but it was not easy to get Guto out of bed that morning. He woke up a bit indisposed and we were afraid he might actually be getting sick. But when we got there and Guto saw the stage it didn’t take long for him to go up on it and try to get into everything he could.
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The organization was great. There were a lot more people than what I expected. I loved seeing all the families supporting their loved ones. I am not sure if it was because there were so many people, but Guto was not on his best mood and just wanted to stay in the bouncy house. Therefore I didn’t walk around to see all the tents and people that were there, but as far as I could tell everything was a success.

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My heart was full to see family and friends together supporting us. Our team was awesome as you can see in the picture. There aren’t enough words to say how thankful I am for everyone that came (from close by and far away) and helped to make this day even more special. The actual walk was pretty short and afterwards most of our team went to Café Bossa Nova for lunch. Nothing like celebrating this great day with family, friends and good food.

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“There is nothing more beautiful than someone who goes out of their way to make life beautiful for others.” – Mandy Hale

PS: more pictures to follow

First big event

Life can be crazy busy, and even working only on weekends the last few months have been full of activities and I haven’t found the time to update the blog. It is like that saying “time flies when you are having fun!” . But here I am to resume the blog update!!!

One of my best friends here in the US got married on September 23rd. It was a small wedding, but the idea of having to keep Guto still for a while just made my body shake. The first thing that I thought was “I am going to ask my in laws to keep him, this way we won’t have to worry about him getting in the middle of the ceremony and we would be able to enjoy the party”. It just so happened that my in-laws had already planned on going out of town that weekend so I guess it was meant to be a test for us! That’s one of the downsides of living so far away from my family. But we made it work.

We managed to get everybody ready on time for the party, including Guto! We were invited just for the reception because the actual ceremony was just for close family members. We got to my friends house at the time she asked us to. All the guests were supposed to wait for the newlyweds outside the house to welcome them. When it was thought they were getting close, everyone went outside and got ready. It took a little longer for the newlyweds to the reception than expected. I won’t lie, it was making me very nervous as I knew Guto was not going to stay still for long. He was getting inpatient and just wanted to walk around, especially on the street.

Luckily they had a drone flying around to wait for the couple and that kept Guto entertained for a while. It was beautiful when they got to the reception. Guto liked the petals that were thrown at them. They also had a friend playing the “piano,” which was another thing Guto enjoyed. And we all enjoyed watching him dance.

I am sure the picture that was taken of everyone there was not exactly what my friend had in mind as Guto would not stay still and would stop in front of everybody. I am glad my friend is so awesome and didn’t care. She even told the photographer, as she was asking us to pick him up and take him out of the front of the picture, to just go ahead and take the picture anyway.

Overall he was pretty well behaved. I believe that he behaved as most typical toddlers would in an event like that. He just got mad when I wouldn’t let him get inside the pool, but I was able to distract him with music, which as before, we all enjoyed seeing him dance until it was time for us to go home. In the end, we survived taking him to our first wedding!

Survivors faces
Survivors faces

What to do when your friend’s child is diagnosed with autism

 It still not easy to say “My son is autistic”, not because it is hard to accept it, I made peace with that long time ago ( I wouldn’t have a blog if I wanted to hide this, right?), but because I never know what people’s reaction will be. And some of them can be very hurtful.  I am blessed to say that 98% of the time I had a supportive reaction, and had more good surprises than bad. So thankful for having so many loving, compassionate and respectful people around me.

*This post is from the blog “Childshould“.

Your friend or relative’s child was just diagnosed with autism, and it’s awkward and uncomfortable and you don’t know how to respond.

I get it.

No one does.

Here are some basics, both from my own experience and from hearing many autism families share on various message boards about what was helpful and unhelpful in the very beginning.

Do:

Call your friend. Texting doesn’t count! (Younger parents—I know you disagree on this. Take it from a forty-year-old. A real live phone call goes a long way!) Ask her how she’s feeling. Let her know that she can vent or cry to you. We are all afraid of being downers to other people. Knowing someone can handle the hard stuff means everything.
Bring over a cup of coffee. Or a casserole. Or a bottle of wine. Or fourteen Cadbury bars. I’ll always remember the friend who came by with Starbucks when she heard. The little things really do count the most at these hard times.
Keep inviting your friend to all things you would normally do together. Storytime on Tuesdays? Invite her. Playdate after school? Invite her. Your friend will decide if an outing is too much—but the worst thing is for her to feel isolated or rejected by the lack of invitation.
Treat her child the same way you always have. If this is your nephew and you have always had free reign to correct his behavior, keep it up! We want our kids to have as typical a life experience as possible, which means typical experiences with every day people. Unless or until your friend asks you to treat their child differently, just keep up business as usual.
If you can offer to babysit, do it. You cannot imagine the to-do list that was just dumped on your friend’s lap. Diagnosis means endless phone calls to insurance companies, state services, school districts, early intervention, speech, PT, OT, endless coordination of appointments, reams and reams of paperwork, and a whole reorganization of life as she knows it. And all of this has to be done while she is feeling grief, fear, and confusion—and still parenting and working and cooking and cleaning and all the daily stuff of life. Even if you can supervise the kiddos downstairs while your friend starts her list of phone calls upstairs, it will help. A lot.
Do know that your friend is genuinely mourning a loss. I know it’s taboo to say that early diagnosis is a time of mourning, but honestly, it is. Imagine going from typical parent dreams—that our kids will be athletes, valedictorians, successful spouses and parents—to simply wondering if they will ever live on their own, hold down a job, or even speak. There is grief there. Treat your friend as you would any person going through a tough time.

Don’t:

Don’t use a bunch of platitudes to try to make the person feel better. “It’ll be all right, it’s all good, everything happens for a reason, you’re the best person to handle all of this.” These things don’t make us feel better. They might make you feel better to say, but they make us shut down the actual expression of our feelings, our fears, and our intense new stress.
Don’t say, “I’m sorry.” Honestly, this doesn’t bother me personally. (I agree with the writer) When people say, “I’m sorry,” I assume that they mean they are sorry because it must be stressful and scary and hard—which it is. However, I know that many, many autism parents hear this differently and find it very offensive. Not worth the risk.
Don’t avoid your friend, assuming they want space. If you give someone space without first asking if they want space, they basically feel rejected and isolated. Everyone wants the choice of space. No one wants space forced upon them. Invite your friend out as you normally would, and do not take it personally if she can’t participate for a while.
Don’t stop bringing your child around the child with autism. I had regular weekly playdates with two friends and their kids for the two years prior to diagnosis—and literally never saw again afterwards. Both sent texts: so sorry, hang in there, and then had excuses every single time I texted for our typical playdates. I got the message pretty quickly—but it was still shocking, and still stung like crazy. Your child will not be stunted by hanging out with an autistic child. In fact, your child will definitely have autistic peers in school, so might as well start their education (and your own practice of inclusion) now.
Don’t humble-brag/compare/complain about your neurotypical kids. “I’m sure he’ll start talking. It’s just like how we never thought Billy would win gold at State, but then he did!” No. It’s not.
Don’t assume there is some huge, glowing autism community that has scooped up your friend and given her a fabulous social life. There isn’t. This disorder is wildly isolating for families. Plus, even when we meet other autism parents, the spectrum is so huge and our experiences so different that it’s still often hard to connect. The lucky ones will find a few great people along this road, but in the early days, we really need our long-time buddies.

Now call your friend and get to Starbucks and put on your listening ears. She will remember it forever. I promise.

The Sweetest Gift T-Shirts are in!

I am so excited to say that our t-shirts will be arriving soon so we can start our fundraiser to raise funds and help promote awareness to one of the most important causes we know: AUTISM AWARENESS! Our t-shirts are just too cute not to get one! All profits from the sales will be directed to Autism Speaks to help on their search for the causes and most effective treatments for autism and provide information, tools, and resources to improve the lives of individuals and families affected by autism. We have 2 t-shirt styles (see below). On the front you find our logo and on the back the logo of our sponsors. A huge thanks to all of them for helping us to make this happen.

You are welcome to join us at the Arkansas Autism Walk that will take place on October 1st, 2016. Our team will be proudly wearing this T-shirt 🙂

We will start mailing t-shirts around September 15th. After this date, if you live in the Little Rock area,  you will be able to purchase the T-shirt at any Moose Cleaners location.

Please share with your family and friends so we can make this a successful campaign! I would like to take a moment to thank all the people that believe in this cause, and a special thanks to our sponsors: Moose Cleaners, Pafford Air One, Cafe Bossa Nova Restaurant, Magic Press Corporation, Red Door Book and Veiga Racing for Autism.

 

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Color/SIze



Say a little prayer…

A photo by Aaron Burden. unsplash.com/photos/df47UDrfi8I

There are moments in our lives that help us realize the importance of things we usually take for granted. Life itself, for instance, have you stop to think how fragile and special it is?

I have to admit I have been mad at God for quite some time, or maybe not mad, but I have been questioning him for a while. Like this past weekend when one of our little patients passed away or when I first got Guto’s diagnose.

Some of you already know that I am a RN at a Children’s Hospital CVICU (CardioVascular Intensive Care Unit). I have the opportunity to work with some of the most amazing people I have known and some of the most incredible families and patients. We do everything we can to always have the best outcome possible, but some things are out of our hands and sometimes we have to deal with situations that are so difficult that is hard to cope. This last weekend was such a hard one for me and my co-workers.

Some things are hard to understand and accept, like diseases in children. I still have a hard time believing that my loving God would want a innocent child or a good family going through such a hard time. Not that I think anyone deserves bad things, but with good people it is even harder to accept some of the hardships they go through. Believe me when I say it is a hard time not only for the child but for the families too. During the time I have been working I had the opportunity to see some really happy and some not so happy moments. Like when a patient finally received a call saying the heart they had been waiting for 8-9 months is finally available, and when you see a child opening their eyes and smiling for the first time after an open heart surgery. Or when you finally say “see you around” to a patient going home after in the unit for many months. Those are the moments that make my job worth it. But then there are those few moments that make me question my decision to be a nurse. Every time we see a family say goodbye to their loved ones after a long journey of surgeries, procedures and ups and downs and so many prayers. When you see the despair in a parent’s eyes after knowing their little one will need a complicated procedure or surgery. Those moments are so hard to comprehend that it is beyond explanation.

Every time I go to work I pray that I can make a difference in the life of the patient and family I will be caring for. I pray that God gives me the strength and knowledge to make their lives a little easier and happier.

The families and patients have taught me so much. I am so thankful for all of them. Some of them have impacted my life more than they will ever know.

As I came home from work last weekend all I could think of is how blessed I am. I can’t understand why bad things happen to good people, then I read something in one of my patients webpage that made me think. “We may not know WHY now, but we have faith in God’s plan that there is a reason for all seasons of life.” If they can see a loving God without questioning in such a hard time, so should I. And for some reason those words put my heart to rest, and all the anger I had, somehow went away.

It made me think that even with all the struggles we will have to endure in our journey called life I still have a child that can breath on his own, a child I can hold and kiss, a child that smiles, a child that can walk, run and jump, a child that I can put to bed, I child that I can take to school, a child that can snuggle with me when we sleep, a child that I can feed, a child that I can hear laugh and cry, a child that in his own way can show me his needs. And more than anything, I have a child that I can love unconditionally.

For all of this and so much more I am blessed.

Today I ask all of you to say a special prayer to the parents, the little heroes and the little angels I work with. And if it is not too much to ask, say a little prayer for me too.

“Be joyful in hope, patient in affliction, faithful in prayer.” ~ Romans 12:12

We got a logo!!!

The Autism Speaks Walk is just around the corner and we finally got our logo figured out thanks to my wonderful friends Rodrigo e Luciana Barranco from Magic Press Corporation. I sent them some ideas of what I had in mind and they were able to deliver exactly what I wanted. Hope you all like it as much as we did.

We decided to go with the butterfly because we feel the symbology behind it is just perfect. It represents something that is unique and without a doubt every person with autism is unique. It is like they say if you know one person with autism, you know one person with autism. There is no one like the other. Guto is unique in so many ways, and he is beautiful just the way he is. The butterfly is about the transformation. Transformation that not only Guto is going through, but all of us around him as well. The butterfly antennae have hearts to represent our unconditional love for that amazing boy. We will always be there for him no matter what. He is our most precious gift from God. He is The Sweetest Gift of all!

We also used the puzzles because in my opinion the puzzles represent the pieces we need to figure out what autism is all about. It does not mean that my son, or another autistic person, is a puzzle in any way. My son is not missing any pieces, he is complete. Like I say before the puzzle represents the disorder and not the person.

So here is the logo we will be using in our blog and the T-shirts for the Autism Speaks Walk. Let us know what you think!

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Autism Symbols

Getting prepared for the Autism Speaks Walk is something that is helping to keep my sanity. Our team is called “Veiga Racing for Autism” and the name was picked mostly by my husband. Racing is his passion and he promised me to help raise awareness about autism through his racing, which we thought was a good fit.

After deciding on the name we had to start thinking about a logo, and that’s when I started to research about autism symbols. We have an idea about what we want to use, but we need to have something that will make it easy for people to know what we are supporting. I also need to figure out a logo for this blog, so the research seemed appropriated.

What I found was quite interesting and also made me think about the meaning of the symbols used to promote the cause. The most known symbol for autism is the puzzle piece and here is what I found out about it.

The origin of the puzzle piece, the primary symbol for autism, goes back to 1963. It was created by Gerald Gasson, a parent and board member for the National Autistic Society in London. The board believed autistic people suffered from a ‘puzzling’ condition. They adopted the logo because it didn’t look like any other image used for charitable or commercial use. Included with the puzzle piece was an image of a weeping child. The weeping child was used as a reminder that Autistic people suffer from their condition.

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It has been a long time since The National Autistic Society had a different vision on autism and changed their logo to a more positive one. The new one is a heavily stylized symbol of two figures reaching out to each other.

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The puzzle ribbon was adopted in 1999 as the universal sign of autism awareness. Although this image is a trademark of the Autism Society, the organization has granted use to other non-profit organizations in order to demonstrate unity and advance a universal mission as opposed to any individually held interests or promotion of a single organization.

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The Autism Awareness Ribbon — The puzzle pattern reflects the complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope — hope that through increased awareness of autism, and through early intervention and access to appropriate services/supports, people with autism will lead full lives able to interact with the world on their own terms.

I found out a lot of people dislike the puzzle piece symbol or the Autism Speaks slogan “Until all the pieces fit”. They believe the meaning behind it is negative. Like a symbol of isolation, or that the person is too mysterious to be understood, or even that they are not a whole person, that they are broken.

To me the puzzle piece symbolizes autism, the disorder, not my son. It symbolizes the mystery of his condition and not him. We are all still trying to figure out so much about ASD and that is the puzzle I am trying to complete. “Until all the pieces fit” means that I will fight and look for answers until I stop breathing or until the ASD puzzle is complete! It doesn’t mean I want to fix him, after all he is not broken like some people think!

I really liked what one parent said the puzzle piece meant for him. He said that his son was the piece missing in his life in order for him to be complete. My son for sure came to complete my life!!!

Whether the puzzle piece is seen as a symbol of diversity and hope or a motif representing isolation, the design has a major place in the world of ASD. It is by far the most recognized symbol for autism awareness. I did find a couple of other signs and the meaning for each are really interesting.

The rainbow-colored infinity symbol represents the diversity of the autism spectrum as well as the greater neurodiversity movement.

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The butterfly symbol represents something that is already unique and then it transforms into something even more beautiful. This has parallels with people living with autism, where we cannot judge what someone would be like in the future as transformations happen throughout their lives as they mature. As they blossom from their cocoon, their true colors of what they are surface and show their true beauty.

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There is a whole bunch of other figures that combined with the puzzle pieces somehow symbolize ASD and bring awareness to the cause.

Now I would like to know which symbols do you know and what do they mean to you?

 

Sources:

Autism Society: http://www.autism-society.org/about-the-autism-society/history/autism-awareness-ribbon/

The Art of Autism: http://the-art-of-autism.com/the-autism-puzzle-piece-a-symbol-of-what/

The many faces of autism: http://manyfacesofautism.weebly.com/autism-awareness-symbols.html

Autism Society Manitoba: http://www.autismmanitoba.com/news.php

KGB Answers: http://www.kgbanswers.co.uk/what-is-the-meaning-for-the-butterfly-symbol-in-autism-awareness/22806011

 

Spreading the news…

Autism Speaks is promoting a walk in Little Rock on October 1st and our family is planning to participate in it. I sent a request for a package to help promote the event and one of the suggestions to help build our team was to send an e-mail to family, friends and even a message on FaceBook informing everybody about it.

As I finished writing  the email to send to everyone I didn’t realize how hard it would be to hit the send button. Not because I am ashamed, but because I am terrified. I am terrified of the future, of how people will react, of how people might treat him after knowing his diagnosis. I am terrified people will walk away from us and I will feel even more alone than I already do. I am terrified of people judging him and even judging our parenting… I am completely terrified.

As I share the news with my peeps I know I am letting my guard down, and that I might get hurt, but at the same time it is the only way I can get help. How am I supposed to get support from friends and family if they don’t know what I am going through? As hard as it was, I forced myself to do it. I started by sending a message to some of my family members by telling them in a few words what was going on, and them invited them to know more by following the blog.  I decided that I should go slow… And little by little I was able to send messages and e-mails to a few groups of friends.

I was surprised with some of the responses and lack thereof. Some people didn’t even acknowledge my message. I wasn’t expecting to get a response from everyone, but there are some people that really disappointed me! Sometimes silence can do more harm than good. I understand some people don’t know what to say, but a “I am here if you need me” or “I am praying for you” would do. Some friends on FB only sent me an emoticon, and that was enough, no words needed. Maybe they didn’t know what to say either, and yet they said something by their action. Then there were those friends that took the time to write a line of support or even a long e-mail, which were really comforting to read. I almost forgot the ones that not only showed support, but also asked questions about it. It was nice to know that some people really care and want to learn more about the subject so they can offer more help.

As I sent the messages I realized how difficult and bumpy this road will be and I am terrified I won’t have the strength and knowledge to help him go through it…

“I thought I would have to teach my child about the world. It turns out, I have to teach the world about my child.” (Unknown)