Category Archives: Blog

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!

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Survivors faces

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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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)

Just breath…

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I know I haven’t posted anything lately, but I have a good excuse. We were out of the country for a month and the return to reality hasn’t been as smooth as I thought it would be. So let me try to update everyone.

We were gone to Brazil from the middle of June through the middle of July to visit family and friends. Guto did a lot better on the flight than we expected. Everything was going smoothly and he fell asleep after a couple of hours. But then he suddenly woke up somewhat in a panic and cried nonstop for almost 1 hour. We were not sure if it was because he woke up and got scared, since he didn’t recognize where he was, or if his ears were bothering him. Fortunately he finally calmed down and slept pretty much the rest of the way. On the way back he was a champ and slept on Joe’s lap almost all the whole way.

We had a busy month with him while we were there! We threw him a Mickey Mouse themed birthday party, had him baptized and got to spend lots of quality time with family and friends. He especially got to spend a lot of time with his six year old cousin Giovanna from Hawaii. If you don’t believe in love at first sight you should have been there to witness it. They clicked the moment they saw each other and Guto even went to her to giver her a hug. He had NEVER done that before! The two of them were together almost 24/7 and needless to say this momma had teary eyes almost everyday watching them play together.

The time we spent there went by so fast, but it was amazing, specially for him. We feel like the trip made a huge difference in his personality. I don’t know if it was the fact that he was constantly stimulated being around people most of the time, all the new places he got to see, or perhaps a combination of both. He even went on a helicopter ride around my hometown! It really was a memorable vacation for all of us, but as they say all good things must come to an end and so did our trip.

We got back in the middle of July and I had to get back to work a couple of days later. Joe was not as lucky as he had to get back to work the very next day to get things back in order. It was great being on vacation for a whole month, but there was a price to be paid being gone so long. There were a lot of fires that needed to be put out at Joe’s business, but he is managing to get things under control again. The house is still not quite back to normal as we still have stuff from the trip around the house that need to be put away.

We got home on a Thursday and Guto went back to daycare (Mother’s Day Out) the following Monday. In the past he would start whimpering as we got to the school parking lot and then he would start crying whenever we tried to drop him off. Well, he only cried for a little bit when we dropped him off on Monday and when Joe went to pick him up the teacher was bragging about how well he had behaved and pointed out that he didn’t cry the whole time he had been there! Joe dropped him off again on Wednesday and he had a wonderful day without any issues. He had speech therapy on Tuesday with a new therapist because his regular therapist was out on maternity leave and he didn’t cry at all that day either. This is solid proof that the trip did him some good and he is definitely making progress!

One week after we got back he had two more evaluations done, which included the Early Intervention Program to help pay for his medical bills and a meeting at the Dennis Developmental Center to get a definite diagnosis on his condition. I guess I was hoping against all odds that somehow I could have been wrong all along and that we were just dealing with some sort of delay that would right itself off over time. But on July 22, 2016 we got the formal diagnosis that we had been dreading all along. I know it was something that we were expecting, but it still wasn’t easy having Guto labeled as an autistic child. We were given a packet filled with information about ASD and programs that we should apply for in order to get financial aid because this can get expensive very quickly as we already found out.

Today we had a meeting with the Early Intervention Coordinator and a couple of team members from the clinic he currently goes to and based on his most recent evaluations his speech therapy sessions were increased from 60 minutes to 90 minutes per week and he will start 90 minute sessions weekly for occupational therapy as part of his curriculum. They gave us another huge packet with more papers to fill out. We never imagined there would be so much paperwork involved, but it’s just one of those necessary evils that we must deal with in order to give Guto the best possible tools to deal with his condition. I don’t think overwhelmed can begin to describe the feeling I have right now.

All I can think about is to tell myself “Belle don’t forget to breath, just breath.”

Image Source: Unsplash

Ready or not, here we go!

As a birthday present I got a phone call from Becca telling us our next appointment had been scheduled. I was so happy! We were finally going to see a neuropediatrician. Nothing against the other professionals that had assessed Guto until this point, but since autism is a neurologic disorder, it just made sense to me that to have a accurate diagnosis he needed to be evaluated by a neurologist.

On May 12th we meet with Dr. Scott, MD. We can’t say enough how much we really liked her. She not only honestly answered all the questions we had, but she was so patient. We spent close to 3 hours with her.

Dr. Scott was able to change to July the multidisciplinary evaluation appointment that Becca had originally scheduled for September, which worked out great since we are going to Brazil for a month and the appointment will be a week after we return. She said she could not give any definite answers to us, as far as a diagnosis, until we had an evaluation with a speech therapist and a psychologist. She talked to us about treatments and programs we could start looking into just to get more informed. Some of them only would work if we got a formal diagnosis, which is why, she said, it is important to close the diagnosis as soon as possible.

After all this, that is no doubt in my heart about his diagnosis. I was already very certain, but we always have that piece of hope in us that wishes that someone will see something you are not seeing and tell you that you are wrong. I think it is kind of funny how some doctors don’t want to worry you saying “we are not diagnosing him yet” but deep down you know they already know the answer, and so do we.

One thing she said that stuck in our minds was along the lines “Are you ready to embark on a challenging and complicated journey raising an autistic child?”

The unknown is always scary, but we know we won’t be alone. So…

Ready or not, here we go!

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Image Souce: Unsplash

On the right track

The staff at the clinic was extremely nice and helpful. We were told at the clinic that Guto should have been qualified for therapy based on the speech evaluation he had undergone in January and they couldn’t understand why he was denied the therapy recommendation. They checked with their superiors and found out we were able to qualified for speech therapy without needing a new evaluation, since our previous evaluation should have already qualified him. An addendum was all that needed to be done. They also told us about the early intervention (EI) program available through the government and they helped us get the process started, since it would take a few weeks to complete the requirements. We told them we wanted to start the therapy as soon as possible and that we were willing to pay out of the pocket until all the paperwork for the EI was ready. They told us that as soon as they had the addendum they would call and schedule to start his therapy.

A week later we got a letter on the mail saying we had an appointment at the clinic. It was not as soon as I would like, but at least we had a date scheduled for what I thought would be the beginning of his therapy. We got a call on the day of the appointment and were told they would have to reschedule due to the therapist assigned to Guto having been involved in an auto accident. We were told someone would call us back with a new appointment date, but two days went by and nobody called. We ended up calling the clinic ourselves only to find out that the appointment was only to set up an interview to see if we would qualify for the Early Intervention program. I asked about getting his therapy started and they said they needed a referral from his pediatrician in order to schedule such appointment. What??? Almost a month after the original interview and they still had not sent the request. I didn’t even know one was required. So much for the early intervention! I think I lost my mind that day and I just couldn’t stop crying. Why did it have to be so hard to get help. It was just a simple speech therapy, not a complex surgery. Why so much bureaucracy? Why did it have to take so long?

I remember it was a Thursday afternoon. I knew Guto’s pediatrician was at work then, but she would not be back to the clinic until the following Tuesday and I was pretty sure she would not get to sign the required form if they faxed it to her that day. I am so glad I have a wonderful husband that was not only worried about our son, but now was worried about me too. Instead of taking a chance, he had the clinic fax the form directly to him and he personally made sure the paper got signed that day by taking it to the pediatrician himself and then delivering the form in person to the clinic. Now we just had to wait for the call back from the clinic with the day we would start therapy. I made Joe call them everyday to ask about the appointment and it still took them a whole week to schedule his first therapy session. He was going to have two 30 minute sessions a week. I think he should have qualified for more, but it was all we had until the next evaluation when he turned 2.

To our surprise during the week we were waiting for the therapy to be scheduled
we got a call from the Dennis Developmental Center (DDC), which was highly recommended I had spoken to in regards to autism. I was feeling hopeful again because the waiting list was between 9 to 18 months and we got him in within 2 months. How lucky we were!!! I felt like someone up there was surely looking out for us.

Our appointment was scheduled for April 20th, which was one day after Guto started his speech therapy. However, the therapist just watched him for a while to figure out his needs, since she was not the one that evaluated him before so I don’t think that session really counted.

When we went to the appointment at the DDC we met with a social worker (Becca) and she was very sweet. She took all three of us to a small room and I was surprised to see that they didn’t have many toys to keep Guto busy or even to see how he would behave.

During the appointment we mentioned how blessed we felt to be able to get the appointment so early. She said we sent our application at the right time and it must have been meant to be. She also confirmed that the waiting list was actually closer to 18 months due to the number of people they had to assess and their limited time and number of professionals available to do the evaluations.

She sat across from us and Guto started to play with the few toys they had. He was not happy being there and tried to scape a couple of times. She didn’t interact with him that much because this interview was more about us. She asked a lot of questions about Guto’s behavior and medical history and she kept a watchful eye on him during our interview.

We found out that this was just a screening assessment. I guess due to the number of people they have looking for answers, they need this kind of screening to see who really qualified for the type of thorough assessment they provide. Fortunately we did qualify for it and were told she would call with the date for the next step, which was going to be an appointment with the neuropediatrician.

I remember feeling somehow relieved again. Now my baby was going to be seen by a doctor and he would be assessed by a multidisciplinary team specialized on autism.
I told Becca how worried I was since everything was taking such a long time I didn’t know if I was doing enough to help Guto, but I just didn’t know what else to do, everything was so new to me. And her words made me fell so good. She said. “You are great parents, you did everything you could have done. Don’t worry: You are on the right track!”

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After literally losing my mind and after all the frustration we experienced, I believed her words and I finally started to feel I really was on the right track and that somehow everything was going to be allright.

Image Source : Unsplash

Grief

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I was not aware of this, but I had already started my grieving process when I first faced the possibility of having a special needs child. Here is a little bit of what I am facing:

According to Wright (2011) here are the stages a person goes through after a loss:

Shock & Denial: A person may deny the reality or gravity of their loss at some level to avoid pain. Shock provides emotional protection from being overwhelmed all at once.

You may ask why I am talking about a loss since I did not lose a child. Well, I didn’t lose a child, but I lost most of the dreams I had for him. I had to bury the life I had imagined for him to try to start to build a new one. And that’s what I was grieving, the loss of the dreams I had for my child.

Pain & Guilt: Shock wears off and is replaced with suffering of torturing pain. It’s important to experience the pain fully and not somehow hide it, avoid it or run from it. You may have guilty feelings or remorse over things you did or didn’t do. Life feels chaotic and scary during this phase.

Oh the guilt, that is a good one. Deep down I knew I had not done anything to cause it, but I had to try to understand why it had happened to my baby. I had to have done something wrong otherwise why would this have happened? I was blaming myself for it. Why did I have to have a child through IVF, maybe that is what cause it. Why did I have to be a mom after 35, maybe that’s the reason. Why did I eat that sushi (which was cooked) when I was pregnant? Why did I vaccinate him? … and so many other things that would take forever to write here.

Anger and Bargaining: Frustration leads to anger. May result in trying to negotiate with one’s self (or a higher power) to attempt to change the loss that has occurred. You may rail against fate, questioning “Why me?” You may also try to bargain in vain with the powers that be for a way out of your despair (“I will never drink again if you just bring him back”)

I was angry, very angry, especially with God. Why would He do something like that to this innocent child? Why him? I just couldn’t understand. I really hope one day I can. We may not know the answers, but He has a reason for all of this, and I need to trust Him.

Depression, Reflection, & Loneliness: A long period of sad reflection overtakes a person and the magnitude of the loss sets in. During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things and focus on memories of the past. You may sense feelings of emptiness or despair.

I think I am still in this stage. It comes and goes even though I already reached the acceptance stage long ago. I think being away from my family doesn’t help much to pass this stage. Thankfully I do have wonderful people around me that help me get through it every time I see myself getting into this phase again. I am not going to name everyone because I am afraid I will forget someone.

The Upward Turn: Life becomes calmer, more organized as one starts to adjust to life with the loss that occurred. Your physical symptoms lessen, and your “depression” begins to lift slightly.

Once we got the evaluation done and figure out what needed to be done the burden I felt got a little lighter, I wasn’t as angry anymore.

Reconstruction & Working Through: As a person starts to become more functional, realistic solutions seem possible for life after the loss. You will start to work on reconstructing yourself and your life without the old reality.

I guess here would be when we start to make new dreams, and start to build the future with our new reality.

Acceptance & Hope: The last stage – a person learns to accept and deal with the reality of their situation. A person is more future-oriented and learns to cope. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward.

Acceptance came early on, there is nothing we can do to change what life has brought us, so we have to accept it and from that day on we just have to learn how to deal with it. We are still learning, and we always will. Nothing is black and white with austism, so from now on we will take one day at a time and cherish every single improvement. As for the future…. we will build it as it comes, right now we will focus on the present!

“I do not want to foresee the future. I am concerned with taking care of the present. God has given me no control over the moment following.” Mahatma Gandhi

Image Source: Unsplash