My little project

I have always liked things organized and in place, as well as, planning my next project. My husband gets a little overwhelmed with my little projects, because it is constantly. I really don't know why, but my mind never stops. I always have the question 'What if...?' so I go and try what I am thinking. Which I think Francis is getting this from me. So my new little project is to create a place for the kids to play during winter and a work station for Tommy's Individualized Neuro-developmental Program (INP). The only place in the house for my project is the basement, which in the process to get done some day. Meanwhile, I will be using the basement for my active boys to play during this coming winter, so my play/intervention room is looking really good.

An overview of my play/intervention room

Art Station

Sensory Play

Music Station

Active Play

Dramatic Play

This area needs to get more organized

Academics

This area needs to get organized and 

bring more toys

There are four therapeutic tools that I need in our play/intervention room. Those are:

• A trampoline with protective net. Our mini trampoline is getting too small for Tommy. This trampoline is for just one kid, but my boys want to jump on the trampoline at the same time. Both of my boys don't need the bar anymore because they can independently jump on the trampoline. The locks for the bar are not working anymore, so we need a replacement. I searched online and the "Little Tikes First Trampoline with Safety Enclouser - 7 foot" seems to be the perfect size to put in the basement. I am putting this trampoline in our Christmas wish list.

• A hanging seat. There are two hanging seat that I like from IKEA. One is EKORRE and the other one is IKEA PS SVINGA. Both seats help to develop balance and body perception. So either or works fine for Tommy's INP. But the IKEA PS SVINGA seat will force Tommy to use more his cord muscle and arm muscle for our sensory activity. I will also put these seats in our Christmas wish list. 

• Doman's Brachilation ladder. (monkey bars). The brachilation ladder has to be custom-made, so I was planning to build it myself, but I don't have the equipment. So I began to ask to my friends for help, and I got a volunteer who will build the ladder for Tommy. I am so excited about it. I will use the Doman brachilation ladder design as a reference, but I will adapt it to our available space and Tommy's preference and needs. 

• A huge bean bag.  The bean bag will be made by me. I got the fabric on sale from Jo-Ann Store plus an extra 15% OFF of the total purchase, so I paid $21.41 including taxes and shipping.  I still need the fiberfil that I will get from Walmart. Every 10 lb box costs $10.77, so I will spend a little over $30 in fiberfil. The total amount to make the bean bag will be around $60, which I will save around $100.00.

Doing Tommy's INP is something that I enjoy, something I have passion for, something that I take seriously and something I have fun with. I think when I talk about Tommy's INP, people think in "work," but it is completely the opposite. I am having fun doing it because it also involves a lot of play. The best of all, we are seeing real progress. The poor guy got sick yesterday. He had a horrible stomach pain and for the first time he used his voice to yield "mommy" as his way to ask for help. This program is not just healing Tommy is also healing me. Because it makes me happy to see him progressing.  My husband has also joined to work in Tommy's INP in the mornings before Tommy goes to school, so he has became my allied in my fight against Autism and T21. This program has also helped me to find a balance between my kids developmental differences and including Francis as a key partner in Tommy's INP. This program more than helping Tommy is making us stronger as a family.

Here are the boys enjoying the play/intervention room

the first day I finished it.

Working on the sensory ball

Future Professional Baseball Player

THE SKY IS THE LIMIT

Tommy's vision

On Saturday, we had a follow-up appointment with Tommy's Developmental Optometrist. She mentioned that Tommy's vision is improving due his eye muscle are getting stronger. Currently his eye sight prescription, commonly known as 20/20 vision,  keeps the same. But we are hopping this will also improve in the future. Vision is more complicated than what I thought, eye-sight involves just a portion of what vision is.

Unfortunately, I have not time/motivation to work on the activity that the Developmental Optometrist recommended to do at home because it is boring for Tommy (and me). So I have to work with what motivates him. As she recommended, we have been working on tracking with index finger. I found the Barn Door 4 app that has a lesson that targets tracking/eye-hand coordination and give progress statistics. We are using this app a couple of days a week, which I think it has help to get Tommy muscle stronger. Howsover, I give the credit to Tommy's INP (Individualized Neuro-developmental Program) because this is what we have been done in regular bases to improve his vision.

THE SKY IS THE LIMIT!

Tommy is my strength

I have never doubted about the mission God has given me to raise my son, it is not an easy one, but he gives me  the strength I need to keep fighting for my son, the courage to advocate for my son and the wisdom to help my son to recover. God has been side by side with me in these long 2 and half years. He knows my suffering, as well as, my determination. So he knew I would be fine raising Tommy. At the beginning I didn't understand why me, but now I do. Because along my journey, we will touch others and will change their minds. Look at the Tommy's task that he did with the regular education class:

Facts are talking by itself, I am just stepping back and watching. God will do the rest. Tommy's work at school is the confirmation of what I witness, but this time others are the one witness what I do. Tommy is the one who makes me stronger!

THE SKY IS THE LIMIT

Tommy's handwriting keeps improving

Today, I was very surprised with Tommy's handwriting skills. Specially, because he lost many fine motor skills that he gained during the early intervention program. His progress in the area of fine motor was very little in the past 2 and half years. It was hard to see how he was regressing, rather than progressing as other kids with the same genetic disorder. We had have to rework on many skills Tommy completely mastered during the early intervention program because these skills were gone.

Until this year, I saw improvement in his attention span that I knew he was ready to rework on fine motor skills. So I put everybody on the same page (school, private paid services and our in-home intervention). I have been working on strengthening his fine muscle through the neuro-developmental program, but we haven't gotten into writing yet. Once in a while, I use the apps Letter School or Injini to work on letter formation, but I am not consistent. But School is doing a great job with his fine motor skills. I am more focused on his neuro-developmental program, which I think it was the missing piece in our in-home intervention. Two weeks after starting this program, Tommy began to show a big progress that I marked it in the calendar (June 16, 2013) and many skills are starting to come back quicker and new skills are starting to emerge. Getting the right support has been crucial in the progress of my kindergartner.

He didn't follow the direction of writing the sentence,

but it is so cute how he writes his name.

This proof what his private paid OT commented to me,

he understands the letters formation, but he struggles due to his

hypotonia (low muscle tone).

Tommy's tracing is in orange

(I think that the handwriting in purple is from his paraprofessional)

Even Francis has joined us to get

Tommy's upper body stronger to improve fine motor skills.

This was just free play between them, but this is a type of activity that I will keep

encouraging between them because it is activity that has been recommended by 

Tommy's private paid services, and previously, during the Early Intervention Program. 

They just know that it is fun, but not that they are working on strengthening Tommy's muscles.

Yahoo! Big math day for Tommy

It is amazing how much Tommy knows, but he is locked inside himself. But I am figuring out how to unlock his potential. It feels great when other people also witness what I do. I have been immersed in learning about child development and how math is an important path to independence, a subject that many kids struggle so much, but even more kids with Trisomy 21. So I have a new goal in my action plan to help my kids to achieve a solid Math foundation. I am in the first stages of creating a rich/fun math environment, and it seems is starting to work for Tommy.

THE SKY IS THE LIMIT!

Tommy's stamina has improved

Yahooo! Tommy's stamina has improved, according to an email his teacher sent to me this afternoon. We have been targeting his stamina trough nutrition since January 2012. The poor guy was so weak after the hospitalization that he couldn't complete his therapy sessions at school. I will talk in future  about the antibiotic that made his hypotonia worse. I am collecting informationa about it. Along my journey, I have discovered people who didn't have hypotonia ended with low muscle tone due to antibiotics. After a year and 1/2, it feels great that my consistency is giving results. I just keep praying for wisdom and guidance from above to find what truly will help my son to a full recovery.

"Tommy’s continues to be a treasure around here! He is making progress with his goals and his stamina seems to be up from the beginning of the year. He’s staying awake all day, every day, which is great to see." Email from Tommy's teacher