My promise to my son

The day that I got the test results of expecting a child with Trisomy 21, I promised to my son I will never let him down. I worked hard with him during the early intervention program and he was doing many things age appropriate.  But something changes after he got hospitalized almost three years ago. When I called to the hospital saying that my son regressed after the hospitalization, they told me they see it quite often and they did not suggest any help, just to wait if it would improve. Basically, it is what is expected because he has  Down syndrome. As I promise to my son that I will never let him down, I made a decision that I will find the answers and if possible the cure.

Until today, I haven't stopped looking for those answers to my questions. Last weekend, I was watching a medicine documentary, they showed a typical teenage girl who began to lost her balance, then her motor skills; after this, language skills, vision and goes on. Pretty much what I observed in Tommy. Like a lightning, my brain made the connection.  I found the last piece of the puzzle. So I went online and I found the relation between Autism with my son, which it could be minimized if doctors paid more attention about cellular dysfunction in kids with Down Syndrome. I contacted one of my blogger friends who knows a lot of about this topic and she gave me a starting point. It is frustrating that I have had to spend 3 years of exhausting study, to the point of obsession, because doctors didn't have an answer to my questions. 

Now, I feel more empowered than ever before. I know I am going in the right direction. I have also found a pediatric neurologist and a scientist researcher that will contact to guide me. When Tommy began to regress, I promised that I will find the way to get him out of there. I won't stop until I can complete my action plan. And then, I promise to you (kids with Down syndrome and Autism) that I will find a way to share what I have found with many families as possible. 

THE SKY IS THE LIMIT!

HUGS to treat Autism

When autism stroked my son, it was devastating. I was watching, day by day, how my son was getting into his inner self and I couldn't stop it. He didn't want to be around me, he didn't like me; which hurt me so bad. I didn't know what to do, but I followed my mother's instines to "hug him as tight as I could." So I began to hug Tommy very tight more often than ever before without knowing this will  truly help.

Later, I learned about Oxytocin, known as the 'LOVE' hormone. According to an article published in Autism Speaks: "Oxytocin has long been of interest to autism researchers. In 2010, Autism Speaks funded the first clinical trial using oxytocin nasal spray to treat children with autism. The success of this pilot study led to government funding of a much larger clinical trial – currently in progress at centers across the country." But one way that the brain realizes Oxytocin is through 'HUGS.' In kids with Autism ordinary hugs are not enough, they need to be "TIGHT HUGS" due to many kids Autism (not all) have sensory processing issues. 

Then, I watched the Neurodevelopmental Program Introductory DVD, where Linda Kane talks about giving tight hugs to a child with Autism as many times possible to change the behavior of rejecting being hugged. So I kept going with my tight hug's therapy. 

Even a hug machine was invented by Temple Grandin, who has Autism, so it could help her to get calmed. 

"A hug machine, also known as a hug box, a squeeze machine, or a squeeze box, is a deep-pressure device designed to calm hypersensitive persons, usually individuals with autism spectrum disorders. The therapeutic, stress-relieving device was invented by Temple Grandin in college.^[1][2]Autism and autism-spectrum disorders have profound effects upon both social interactions and sensitivity to sensory stimulation in persons with such conditions, often making it uncomfortable or impractical for them to turn to other human beings for comfort. Grandin solved this by designing the hug machine so both she and others could turn to it for sensory relief, whenever needed or simply desired."

A hug machine or Oxytocin spray won't replace the comfort of human contact between my son and I, because hugs are what have helped me to get closer to him. My husband told me the other day, Do you remember when Tommy used to not like you? I felt good when he said this because it is part of the past. I have completely worked it out on my own by educating myself on my son's diagnosis. Today is a different story. Tommy and I have built a trusting relationship! Tommy communicates with me because he knows I give him the opportunity to communicate by waiting as long as he needs to give me a response. I use a lot of body language with him, to tell him that I am entusiathicly waiting for his answer. Many of us don't pay too much attention about our body language and our own communication skills as a communication partner when dealing with a child with developmental challenges, which plays an important role in enticing the child to communicate with us. 

Hugging is one of the most powerful body language to get into the world of a child with Autism because you  say without words, how much you love them not matter what, how important they are for you. Do not expect that a child with Autism will hug you because they struggle to show affection, not because they don't have feelings. They don't know how to express it and the best way for them to learn how to express affection is if they get affection from people around them. One shouldn't request a hug to a child with Autism, instead just give him or her a tight hug over and over again, then over time, you will see a difference. I tried it and it worked!

Today, we see Tommy that is beginning to use more spontaneous gestures and verbalization to communicate. One example: On Sunday, I put him to choose between his new pajamas with a bear design or the pajamas with a motorcycle design. He smiles and took time to respond. While he was taking his time, he kept looking at the two pajamas and smiling at me, and suddenly, he gave me his answer: Dinosaur! He didn't want the pajamas I showed to him, he wanted his favorite dinosaur's pajamas. Another example: When he came back from school, the day before yesterday, he went to the dinning room, came back to the living room and said to Daddy: I want chips and cookies! Something simple as a tight hug has a biochemical reaction in the brain, which can change the world of a child with Autism.

Previous to Tommy's Autism diagnosis, we felt we had a child that was a super baby because he was doing outstanding regardless his genetic disorder. We didn't have many therapies and we didn't have medical expenses. But when he got diagnosed with Autism, it is when our journey truly began because having a child with Autism is very expensive and many of the treatments are not covered by insurance companies. If you try to work with a DAN doctor, you should be aware that the bills can get around $1,000 (out of pocket) per visit. Why not to spend time in a hug treatment, which is not expensive at all, it can be done easily in your daily routine and it truly helps a child who needs deep touch pressure. 

We are really focused on helping Tommy to reach his full potential, regardless his DS-ASD diagnosis. Our son's recovery isn't happening overnight or just to wait and see. What I have realized is that treatments focused on neuroscience (neuroplasticity and neurogenesis) and biochemical medicine, including Oxytocin, is what is working for him. All the treatments we are doing are non-invasive, it means not conventional medication (drugs) and we are seeing more and more progress. We still think he is a true SUPER BOY because he is blooming and changing peoples mind, regardless his challenges and he keeps being healthy to the point he's considered one of the healthiest kids seeing at our Local Down Syndrome clinic, which I thank GOD everyday for this.

The sky is the limit!

Articles about Oxytocin and Deep pressure:
Calming Effects of Deep Trouch Pressure in Patients with Autistic Disorder, College Students and Animals by Temple Grandin, Ph. D. 

Study Provides New Clues to Oxytocin-Autism Connection by Autism Speaks

Paul Zak found that Oxytocin is realized by hugging. Here the link to my post I wrote a year ago about Hug therapy, you can see a video of Paul Zak explaining his discovery about Oxytocin after 10 year of study. 

How to build your own hug machine

Treating Sensory Processing with Craniosacral Therapy.

After 2 years of an intensive study, on my end, about what happened to my son after January 20, 2011, I truly feel Tommy is starting to recover to whatever happened to him. In my search for answers, I have also found ways to help him. A way we are helping Tommy to heal is a combination of Craniosacral and massage therapy.

"CranioSacral Therapy(CST) has been proved to be one of the helpful alternative therapy for autistic children. It uses gentle hands-on touch to decease counteract stress and strain on central nervous system. This CST Therapy must be administered by trained experts, like chiropractors, massage therapists, or physical therapists.

Cranial Osteopathy was developed at the beginning of the 20th century by Dr. William Garner Sutherland, an osteopathic physician, who founded himself in the year of 1872. The Cranial Therapy was not accepted by people for 40 years until some highly sensitive computerised medical diagnostic equipment confirmed that Dr. William Garner Sutherland has been right.

The Therapy is based on the idea that the entire nervous system of human body is in constant rhythmic motion, once some of the movements are restricted, symptoms like headaches or depression would raise. While working with an kid with autism, the initial focus often is on the cranium to locate an area that has the greatest motion response to the Craniosacral rhythm. Delicate release and pumping techniques are used to create more motion in that area." Please click on "Autism World" to read the entire article.

One thing I have to say, the times we have taken him for a session and he had had a cold, while she works moving the fluids, Tommy releases mucus effortless without sneezing and she does not apply deep pressure, just very gentle touches. He seems to heal faster and in a shorter period of time, comparing him with Francis who takes longer to completely heal from a cold, who is not in CranioSacral therapy.

What I like about Tommy's massage therapist is that she is also a mom who has kids with sensory issues. So she understands us as a family. I enjoy every time I go there because I really feel comfortable with her talking about my feelings and fears. So I feel more than getting massage therapy for Tommy, I am also getting counseling services for Free. She has become a very important member of Tommy's team.

Advice to Parents
If you have a child with Sensory processing disorder and/or Autism, CraneosSacral therapy is a good way to help the child to calm his or her sensory system down. And it is a good way for you to relax and recharge your batteries. You can take advantage that you are there an get a massage for you, too. There are some organizations that may fund Craniosacral and massage therapy for kids with Autism.

If your child has sensory issues and you suspect he or she also has Autism. Have your child being evaluated for Autism! Not all the states recognize Sensory Processing Disorder as a diagnosis itself if it is not linked to Autism, making more difficult getting the help your child needs at school such as a sensory diet. If there is not a diagnosis schools are not entitled to provide services. 

There are many grants and programs out there, but they are unknown. Work closely with your Service Coordinator from the Department of Mental Health. The most involved your Service Coordinator is involved in what's going on in your child's life, the better she or he will understand your child needs for services. I don't believe labels define a child as a human being, but the more labels a child has the greater it will be for your child to get state or federal funding for traditional and alternative therapies, especially if your child has serious health issues. Due to Tommy has been blessed with an overall good health and we are family with dual income, we barely qualify for government funding for Tommy, but I will keep finding ways to put in place everything my son needs for his developmental growth because this is an area where he is affected the most due to his regressive Autism.  I don't think of the label like a death sentence, I am taking advantage of the label!

THE SKY IS THE LIMIT!

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

Francis, my Little "da Vinci"

It is too early to know if Francis will follow my footprints as a Graphic Designer, but he definitely is creative with a great imagination, this is why I call him, my little 'daVinci.' Since the beginning of this year when he was about 19 months, he began to scribble shapes. The first shape he scribbled/drew was a diamond, and as soon as he finished it; he called me while pointing at the diamond: 'Mom, a kite' — I think that he randomly drew the diamond while scribbling. Several months have passed since then, and he has gained more control over his scribbles, so he has lately been scribbling/drawing 'whales and sharks.' One time while scribbling on the easel, he said: I't's a shark swimming in the castle.' It was a very long sentence with a great imagination.

A whale drew by Francis

A shark drew by Francis

He has recently discovered how to trace letters. I don't have anything do with this. I just gave him the crayons, so I could focus on a project I was doing from work this past Monday, September 23. A few minutes passed, so he came back to show me that he wrote the uppercase letter 'V', lowercase 'u' and the lowercase 'l.' He has mastered to trace the uppercase letter 'V' and the lowercase 'l,' but I am not sure about the lower case 'u.' Now he asks us to 'write' letters, so he can watch us tracing them.

The letter V traced by Francis

The letter 'u' traced by Francis

My boys are discovering the importance and the enjoyment of writing, which it is very interesting to me because it is happening around the same time, even when they have not worked together on tracing. Tommy has worked on tracing at school or the therapy center where Francis and I are not around. Because they both are intersted on 'tracing' I will definitely be looking for tracing educational tools that suit their deferent learning styles/needs and I can work with both kids at the same time. I know kids should be kids and Francis just turned 2, but I cannot stop him. It is better that I follow his lead! I am thinking on Hand Writing Without Tears, but it is quite expensive and I am not sure if Francis will like it. If you have any suggesting please email me or comment in this post.

THE SKY IS THE LIMIT!