Progress: Improving Auditory Processing

We are so excited, we are seeing a lot of progress. Miss C., Tommy's private paid OT, and I have been very focused on helping Tommy with his sensory issues. Miss C. checked Tommy's file last week and realized Tommy has met all the goals. Tommy really likes her, so he works for her without struggles. She is wonderful! Se has suggested to decrease therapy services. Which it will work great because I won't feel overwhelm with all the other things I am planing for Tommy. I truly appreciate my boy's therapists because I can talk to them specifically about Tommy's issues and get solution on how to help him. Even we won't see Miss C. every week, we will still see her often.


I have set personal goals for Tommy to achieve out of the school settings. Because a child's environment is not just about home and school. It is more complex than that, specially with a child who has sensory processing disorder.


Improving Auditory Processing
Tommy didn't have serious auditory processing issue previous to the hospitalization. I got really concern because we went from a child that we didn't work so much on language comprehension because he was doing good on this area, while in the early intervention program, to a child that bearly responded to his name. This was chocking to me! 


Currently, his auditory processing has enormously improved. I saw Miss C. giving instructions to him while in the therapy session last week and I felt my heart went back to its place. It was a relief! He followed her directions really good. This is how Tommy was. I am glad that other person, who doen't have a background while he was in the early intervention program, is also seeing what I was used to.


Tools that are being used to improved auditory processing:

• The Listening program.
Tommy uses the listening program once a week at the therapy center. As well as, working with private paid OT on targeting his vestibular system. The auditory, the vestibular and the visual systems are interconected. So his private paid OT has been working on organizing his vestibular system because it will simultaneously help to organized his auditory and visual system. But she also targets the auditory and the visual system independently. 

• Different people reading the same material.
I ask to our relatives, who help us with baby sitting, to read the same books to Tommy. The mixture of enviromental sounds or voices are audio sources and information in a kid's world. Hearing the same word coming from different people's voice or source sound help a child recognize the speech pattern. It's like teaching the same and different. When you show a picture of a white cow and a brown cow, the look different, but they are the same animal. It is the same criteria with sounds.

• Audio Books.
They are great to expand imagination, as well as, generalization. One of Tommy's favorite story is the Three Little Pig. There are two people reading the same story in the CD we have, so it applies the concept of The same speech sound different voice. He listened to this audiobook many times before I presented to him visually. He loves so much to hear the story, that I just tell him 'go to your room that we are going to listen to The Three Tittle pigs.' In not time, he is sitting on his bed to listening the story. He has made connection between the audio and the paper book. Grandma has helped on this because she did a puppet show for him about the Three little Pigs. Last night, I put the book on the bed, and he saw it, he said 'The Pig', meaning The Three Little Pigs. His favorite part is when the pigs say "Not by the hair of my chinny chin chin." I will be working with other audio books over the summer. 

• iTunes.
We have a huge selection of kids songs saved in our computer. When I am busy doing things around the house, I pick any song and we sing and dance if possible. One of our favorite, it is a bilingual song (English and Spanish) 'Somebody is hungry'. Tommy listens to the song from the computer, but also from my voice, while I incorporate hand play that I make up. Meal time is a good time in our house to listen to music.

• Song games.
This type of game are wonderful for body awareness and auditory processing. Our favorite one is Ring around the Rosie. We do the version that is in the  book, "Gymboree-The parents' guide to play". We also do Turn around which is also in this book. I got a new CD created by a group of Occupational Therapists to work on sensory processing while improving fine motor and gross motor skills. I am waiting for the CD to come in the mail. I will give more detail after we learn a few song games. 

I use technology to do 'mammy's therapy time' because I work full time, so I need tools that make my life easier and the therapies efficient, as well as, taking in consideration what things are appealing to Tommy. Since he was very little he has shown interest for electronic devices, so anything that it is electronic is very appealing to him. For example: He has been successful several times putting the Elmos' DVDs on. The TV and the DVD are already set, but they are off. So my smart boy knows it! He turns them on, and them, hits 'play'. He already broke a DVD player because he stocked many DVDs in the compartment trying to watch the Elmo's DVDs —Daddy did the same thing when he was a child (Like father like son). Other example, the first time he used an iPad, he impressed his OT and me because he knew what to do. So I just follow my boy's lead. In the future, I will write a post about the iPad and sensory processing as a tool to help my son.

This picture says more than what you see.

The swing does not have a tube around,

this means Tommy has gained enough

strength in his cord muscles. Before there was

 a tube around because he could fall.

Now, he can keep his body in a nice straight posture.

When he gets tiered, his torso gets a C shape.

But he corrected himself often. 

In this picture his OT is working on the vestibular system,

as well as, the auditory system and language.

THE SKY IS THE LIMIT!

________
Thanks to my mother-in-law, our audiobook library has increased.

A Sunny day

Looking at the windows this morning and seeing the sun shine passing thru, it was like a new start to me. There were not worries about T21, it was a day that we enjoyed each other as a family.  A lot of laughs, shopping, walking and eating.

How much things has changed since Tommy began to win his battle against the sensory issues. We are all enjoy his progress and celebrating any of his small or big accomplishment. I truly feel a relief in my heart. We enjoy seeing Francis growing up so fast and showing us how smart and independent he is for being a 11-month old baby.

Our day was very patriotic because we had a lot patriotic activities to get ready for the 4 of July. I created a sensory box on Saturday night based on the 4 of July theme. As a fun way to work on tactile sensory processing. We also song 'God Bless America' several times during the day. We played keeping a white balloon up —Tommy is getting really good on this, followed by his little brother. Tommy got annoyed when Francis interfered trying to get the balloon. The white ballon it is because the colors of the American flag. We read the book 'F is for Flag' that talks about the American flag, and we also did some coloring on the back door. I did a lot of therapy time while doing this activities, but it was so much fun that I didn't think of therapy.

I got inspired for other moms in creating a

visual attractive sensory box. 

The color for today was white.

 So I chose white marker and balloon

for our fun time.

We decided to go to a shopping center, which is about 30 minutes away, to check on some shoes because  Tommy's snicker look warm out and Francis didn't have shoes. The babies shoes from Tommy don't fit him anymore. I found some Tommy's old shoes but they look too warmed out. So we went to the store we can get the brand Pediped. When we got there, we were very excited to get a nice pair of shoes for the boys. While in this store, we got Francis' shoes size and the lady told us Francis was ready for more sturdy shoes than the ones I was thinking of. But they didn't have the colors we like, so we didn't get the shoes. So we left and visited other stores. We ended in the Nike store. My husband went to the kids section and he got in love with some shoes for the boys. But the best of all, the boys got in love with the shoes, too. Tommy got very excited when he tried them on. It was so cute how he showed his excitement. He began to walked on tip-toes and suddling he began to jump with a big bright smile —He was just making sure the shoes were resistant to him. So we knew! He liked the shoes. Meanwhile, we were trying to get the right size for Francis. I thought the shoes were not developmental accepted for me because he is still a baby and he needs a softer sole, well we put the shoes on him and it was just like the magic shoes. He walked realy good with the shoes and because of the grip on the rubber sole, he wasn't falling. He even was very speedy walking on those shoes. So I checked them to see if they will pass my createria about apporpate shoes for the boys. They have rubber sole, they bend easily, there is enough room around the feet so the shoes are not too tide, and the back of the heel is sturdy. So the shoes met the criteria, but the best of all, they were on sale. Both boys left the store waring their new pair of shoes with a big wide smile.

We went to eat lunch to one of our favorite restaurants. The best of all, they sale gluten free and organic meals. Tommy was so hungry that he didn't wait for us and went to pick a table and sat to wait for his food. Francis was exploring around the restaurant and showing off his new shoes —well, he was getting used to the idea of wearing shoes. While we were eating, he didn't want to be fed, so we let him to eat by himself.

Here is Tommy eating his meal. 

A lot of veggies with brown rice and ginger sauce.

 Here is Francis trying to eat with a fork.

But it didn't work out as he was expecting.

Here is Francis getting to the idea of 

wearing shoes while walking.

When we came back the boys took a nap, while I worked in the garden for about 45 minutes. It was too hot, but I could get some work done in the garden.  Today was a beautiful sunny day, but a little hot. Regardless the heat, we enjoyed our Sunday.

A little angel's voice

I truly enjoy being a mom. It is a role a wound't change for anything, this has complete me as a human been. There is always excitement in our house with the boys' accomplishments. I should celebrate them in every possible way. Both of my pregnancies had scary moments at some point. We were told that I could lose my unborn babies. But today the story is completely different! I am happy with the opportunity God has giving me to enjoy them and fight for them. 


So here is one more accomplishment to celebrate. Francis is talking! I couldn't be more excited when I heard my little angel's first words. It is like an angel whispering in your ears. His voice is beautiful! Francis' language development is developing very fast for his age. Here are some of the speech and language milestones at the end of his 10 month:

• He has 14 words. Here is the list of his words at his 10 months.

1. Mama
2. Mommy
3. Dada
4. Daddy
5. Hi
6. Go
7. ¡Qué, qué¡ (what, what!)
8. 'Booh' for pick-a-booh
9. Abooh for Tommy.
10. No
11. Clap (Taah)
12. Bebé (baby)
13. Ya, ya (This means all done, an informal way in Spanish)
14. Beah for Bear 

• He is using some of his words to communicate. For example: When he is done eating, he says 'Ya, Ya'. When he wants mommy to hold him, he says 'mama'.
• He is using 'mama and daddy' properly. 
• His babble begins to sound like sentences, and in between, you can hear some of his words.
• He follows simple instructions. For example: I put his shirt around his neck and I tell him, take you shirt off, and he does it.  Or when, I put his shirt over his head and I say: pull your shirt down, he does it.
• His speech is very understandable
• He combines his words with gestures. 

Enjoy the video of my little angel's voice.

THE SKY IS THE LIMIT

Building memories with a little extra (Part 2)

Wow! We wish we could stay longer in Florida because more than the emotion of going on a tour, we enjoyed each other some much as a family. This has brought a positive effect on all of us. Watching Tommy being confident, exploring, happy and enjoying the noisy environment made us realize he is beginning to heal. Skills I thought were lost began to reappear during and after the trip. In our vacation, we heard Tommy's voice more than ever. He said many words and even new words in English and Spanish. Some of the words I remember he said are: door, 'boca', galletita, ocean, dolphin, gorilla, drink, eat, bear, elephant, run, bye, hola.  One day, he passed by Francis and told to Francis 'I am Tommy Lane.' Which is curious because I randomly ask him 'Who is Tommy Lane? and point at him you are Tommy Lane. I do it just as a silly game. Other day, he made up a song while he was taking his bath. He surprised me! Because I could recall the events had an effect on him to pretend he was a singer –Elmo's DVD, American idol, he saw a singer in Panama city in a restaurant we went to eat dinner and he also saw a singer at Sea world. The night before, he took his clothes off by him self, saw I made a big deal of it. I clapped at him, hugged him, kissed him and made a lot of happy noises. I told him you did it! He said to me 'I did it' (it is not the first time he has said it to me when he has accomplished something). So the next day, he expressed it with a song!

Enjoy the song 'I DID IT' by Tommy Lane, Future American Idol!
He performed at the bathtub in a room at the Embassy Suite Hotel
in Orlando, Florida!

Saying 'boca' (mouth)

Here is Francis showing his moves at Sea World

We truly enjoyed this trip, specially, Tommy. He enjoys the evelevators, the hotel and even the halls at the hotel. He trully knows how to have a good time.

Here is the video of the moment we all were waiting

for,face-to-face, Tommy and Elmo. 

You can see the paparazzi (mom and dad) working together to capture the moment!

 

We all love Elmo!

Having fun the night before going to Walt Disney World

Yes! Tommy drove, but Daddy took over after 

crashing many times!

 

Tommy attacked me with kisses

I love this picture because it shows how we are as a family

I love this video of Tommy because he showed good manners while coughing,

 greeted at the camera and answered my question.

THE SKY IS THE LIMIT!

______________
Tips for families with a member with developmental challenges:

• I know that thinking on vacations is something many of our families with a child with developmental challenges cannot even think about it because of the high medical bills and private paid therapies. But there is always a way to make things can happen. The website www.autismtravel.org gives good ideas on how to organize a family vacation with your love one with developmental challenges. 
• Depending on the child's diagnosis and medical issues, it would be good considering the services of a travel agency for people with developmental challenges.  I personally don't have experience working with this type of agencies, but I want to share the information with other parents. Hammer Travel is a travel agency dedicated to help adults and children with developmental challenges to enjoy a vacation. To get more information you can visit their website: http://hammertravel.org/

Building memories with a little extra (Part 1)

There are families that prefer to wait until there kids are older to plan family vacations, but when it is a family as our, that have a little extra, a family vacation is a need. We don't have much free time in our typical routine. After I leave from my work, I run to do what ever therapy, chiropractor visit or anything needs to be done to help Tommy overcome his challenges. I don't go to bed until 10 pm or 11pm depending on how things are around the house and wake up the next day at 5:45 am to get to my work at 7:00 am. So I am on the run all the time. I don't have the time other typical moms have, but I make it works. Our first years as a family, we spent a lot time with our son's therapists rather than with our own families. On top of that, we have extra worries and stress about our son's development than with our typical child, as well as, medical check-ups and appointments, which are time consuming, but we truly believe in monitoring Tommy's health makes a huge different in his quality of life. So to function as a family, we need a relief. I hope and pray other families with a child with a genetic disorder can have the same opportunity than us to have a family vacation every year.

Planning a family vacation with a child with developmental challenges may be more challenging. So we want to share a few tips when planning a family vacation with a child with a genetic disorder, sensory issues and food sensitivity based on our experience.


Tips for a route trip:

• Choosing a season. We always choose to take our vacation in Spring because touristic places are not too crowded and the weather is nice comparing with the summer that can get too hot.  Our kids suet like crazy.
• Choosing the vacation destiny. Plan your family vacation in a family friendly place because you always will find people willing to help. As well as, considering your child's preferences. Tommy is an animal lover, Elmo's best friend and He loves being on the water. So we considered these things while planing our vacation.
• Previously expose your child to the environment he or she will be having fun. I got books to talk about the ocean and sea creatures. So he was ready for the beach! I also got new books to bring in our trip about topics he is interested on. He is very interested in Cowboys, so I read his new book.
• Booking the hotel close to an organic grocery store. Our favorite organic store is Wholefoods Market, they have many locations around the country. So you can get food your child can eat. We chose Embassy Suite Hotel and the closest Wholefood was about 2 miles or even closer. 
• Packing food that the child can eat during your route trip. A few examples are: rice chips, oat cereal, apple sauce. It will depend on the child's food sensitivity or allergy..
• Getting thermo coolers. We had a small thermo cooler bag to transport our supplements. As well ad a tote bag to trasport cold food such as goat milk if you are doing a route trip. 
• Checking the menu of fast food stores, if possible before going on vacation. You may be surprised. We found some food for Tommy in fast food places. But I don't recommend this, if the child have food allergy. In our next vacation, I will call some fast food places to get detail information about the food labels.
• Packing a few a familiar toys, books and if possible a few home made toys. A small blanket to play hide and seek or peak-a-booh in the car. Tommy and Francis had so much fun being cover by the blanket.  Play simple games while on the route, such a pat a cake or singing your kids favorite songs. We had fun!
• Bringing technology on your vacation. If possible borrow a TV for the car, bring your iPad, download your kids favorite music to your iPhone. The cable to plug the TV to the car, can also be used to plug the iPhone and listening to the iTunes. 
• Smaller Strollers. Umbrella strallers are ideal. Walmart carries one that support up to 100 lb at an economic price.
• Small vibrating massager. I brought a small massager, so before going to bed, I gave massages to Tommy to help him to get calm. I just did it the nights he was very active and didn't want to sleep.

Enjoying the beach at Panama City, FL

 

Celebrating Daddy's Birthday

Sea World

Tommy got captivated by the sea creatures

Bush Garden

Look at his smile. It was the exact moment he saw at Elmo from far away.

The moment arrive. We all were excited when Tommy met Elmo

You can tell how happy he was after meeting Elmo

 He couldn't take an eye out of Elmo 

He enjoyed the gorillas. He even was thumbing his chest as a gorilla.

Tommy regularly doesn't drink plane water. But he did it at Bush Garden.

We are extremely blessed that Tommy is an adventured and risk taker, as we are.

He loves the change of routine. In fact, he is a happier child when we take him on vacation. 

He has traveled since he was a year old and we don't know other child who loves to travel more than him.

We have so much fun that we decided to stay one more day. We have a great time! 

I will post more photos and a few videos of our super boy in his trip to Florida.

THE SKY IS THE LIMIT!