My Great Story Video Project: Great Expectations (Chris Burke)

Who doesn't know Chris Burke from the TV show

"LIFE GOES ON."

He is a true story of what high expectations can do for a

person born with a genetic disorder. He said it in the video:

"I want everyone to know, it is about having
goals and dreams."

He couldn't say it better. When I got the prenatally diagnosed

I kept those dreams for my son regardless the diagnosis.

My dreams back them were:

He will one day become bilingual, he will attend to college and he will find his other half.

A few weeks ago someone asked me what are my goals and dreams for Tommy. I answered:

My goal is that he become independent and my dreams that he attend to college and he can find his other half. 

He is already bilingual. Loves to watch Plaza Sésamo (Sesamo Street in Spanish). Yesterday, we were pretending that the stuff animals where talking to Tommy. So the tiger asked him: Como estás? Tommy answered: MUY BIEN! (Perfect Spanish accent). 

Those goals have not changed and won't change.
For many people this may not be realistic

because he has DS and Autism. I cannot diny that he has these labels because I live it 24/7, 365 days all year around and every year that will come. But I am the one who lives with him, so I am the one who expereince and witness many things that the rest of the world doesn't.
The other day we were reading a book about fall. 
The book has questions at the end. So I asked:
What does come after fall?
Tommy answered:
WINTER.

THE SKY IS THE LIMIT!

Update about Tommy

Today, We meet Mrs. F. She will be Tommy's private paid Speech therapy. She has experience working with kids with a single diagnosis for Autism as well as a single diagnosis for Down syndrome. So it was easier for her to spot  that Tommy's Down syndrome diagnosis is not the challenge. All the challenges that she observed are due to his Autism diagnosis. Finally, I found a Speech therapy that truly understand Tommy's challenges. She could observed that definitely doesn't have struggles with articulation. She also was lucky because Tommy showed to her he can say many, but many words. So she agrees with me that we have to work on what it is developmentally appropriate for him; therefore, playing skills are huge factor for Tommy able to communicate.

Mrs. F.'s intervention will incorporate Tommy's routine with visual support. Which it is something I like because I can make flashcards base on Tommy's environment and I will be also available to use them as part of Tommy's neuro-developmental program. I was able to get Tommy engaged in 'people play' with the neuro-developmental program. Now, he is allowing his brother to have 'people play' with him. This is the first stage of the developmental ladder for communication skills. I have tried to get him engage to play with toy and I have a slow progress on this stage, so I realized that I was needing a professional to train me on the second stage of the communication ladder because engaging a child with Autism is harder than engaging a child with Down syndrome. So I am applying the principals of the neuro-developmental program with the guidance of a Speech therapy. Mrs. F. has experience on playing skills as the first stage of communication skills.

We will also incorporate more neuroscience in our intervention, this time with a Neuromuscular specialist so we can finally get the root of the problem. I have realized that there is a lot it can be done with ADVANCED MEDICINE if Tommy gets the diagnosis for Mitochondrial dysfunction that will definitely benefit his outcomes for Autism as well as Trisomy 21.

There are also two international specialist who are successfully working together in helping kids to recover form Autism. They do not live in the USA. One live in Europe and the other one in South America. Most of their work is not translated into English. Howsoever, they have information in Spanish for my benefit. All the kids treated under their protocol have fully recovered from Autism. So now I am in the quest on how to work with their protocol from the US.

I have put the puzzle together for my son to overcome Autism, the challenge sometimes is MONEY and TIME. But I am making it work!

The sky is the limited!

Mikayla Holmgren dances to greatness regardless she has DS

This girl has it all. She is pritty, self-confident and talented! Nothing is stopping her to reach high in what she does really good, dancing.



Things are cahnging and will keep changing for our kids with Trisomy 21 because we parents, throught many generations, have empowerd ourself by biliving in our kids in firts place and letting the labels in second place. Enjoy Mikala's story!



Mikayla Holmgren dances to greatness - KMSP-TV



THE SKY IS THE LIMIT!

A little help from above...

Sometime we may think God doesn't listen to our prayers. It isn't that he doesn't listen, he just wait for the right moment to give us a proof how much marcy he has for us.

Having a child with special needs brings challenges and sometimes unexpected expenses. In my experience with Tommy's Down syndrome diagnosis, I can say we have been very blessed. Tommy doesn't have heart surgery or any type of surgery. Developmentally, he was doing really good. Howsoever, we cannot say the same about his Autism diagnosis.

I remember one time in a meeting with the school staff where I expressed my concerns about Tommy possibly having Autism, one of the person in the meeting said that the Autism diagnosis won't help to get him more services. About three years have passed after that meeting, and I can say: I am glad I followed my mother instincts to evaluate Tommy and his Autism diagnosis was comfirmed.

Today, God has proofed me that I am not walking alone in this journey. Tommy got a Grant from East Missouri Autism Project for Occupational Therapy. Howsoever, there was an issue. It is a small grant and the provider I previously chose is out-of-network with our insurance company. And the Grant was combined with health insurance. There was another issue, the provider I chose has high rates, so Tommy wouldn't get many sessions from it. On top of this, we would have to paid out of pocket and then East Missouri Autism Project would reimburse us. At the same time this was going on, by casualty (divine intervention), I found out about a place that provides Aqua therapy and gets funded through East Missouri Autism Project. So I called Tommy's case manager in the Department of Mental Health who is coordinating the grant to switch providers. But she said it wouldn't be possible because they don't fund Aqua therapy. She said to try to get a provider in network with our insurance company so Tommy could get Occupational Therapy. I tried to find the providers in our area who could come to the house and do the therapies at home. There are just three providers close to where we live. Two out of network and one in network. There was one provider  that called my attention who is out of network with our insurance company. But I decided to contact them any ways. They were willing to work it out to see if the insurance company will accept a GAP EXCEPTION Because they understand that kids do better when services are provide at home and parents get trained to support their kids special needs, so at the end there are better outcomes in benefit of the child.

The insurance company has agreed in a pre-certification that they will fully cover Tommy's speech therapy and the therapies will be provided at home with the out-of-network provider. Tommy will also get Physical and Occupational therapy at home from the same provider for a very low copay. After we meet the deductible, they will probably cover for all therapies. We got this due to new laws that has been implemented in our state to support kids diagnosed with Autism.

Probably God thought that this was not enough. So the Grant from East Missouri Autism Project has been approved and it is in the process for Tommy getting Aqua Therapy at the same location where he receives private paid swimming lessons. The funding is approved, I have to finish filling out the paper work and Tommy will put in a waiting list to start his sessions in January. The services for Aqua therapy will be for about 7 or 8 months due to the rates per session are a lot lower than traditional therapies.

In the past years, I kept in the back of my mind that maybe that person in the meeting was right. I was not getting the services Tommy was needed or the funding for those services. But I put it in God hands and kept praying. Every time that I had to make a phone call in the last weeks related to Tommy's grant, I prayed for God's divine intervension. And now, his Autism diagnosis has gotten more services for him.

THANKS GOD TO LISTEN TO MY PRAYERS!

Autistic mute discovers he can sing

You would never imagine that the song you are about to listen

in the video above, it is from someone who has never

spoken a full sentence and is still non-verbal! 
His name is Kyle Coleman who is 25 years old. 
He was diagnosed with Autism at the age of three.

This is exactly what I see on Tommy. Tommy can memorize songs. If someone who doesn't know him, hears him singing, that person would think that Tommy is verbal. Specially, when he is singing a song  and he suddenly changes the lyric. The new words  that he has introduced sometimes rhymes with the song.  My neighbor was the one who noticed it last year. He keeps doing it that even his  Aids at school have noticed it. Just last Sunday, I heard him singing:

Blue Bird, Blue Bird in the tree...

and he suddenly changed it to:

Blue bird, blue bird in the window

(while he was looking outside through the window). 

All kids like music, as well as, most kids with Down syndrome respond well to music, but they don't develop "affinity" as kids with Autism.

Here is where I see Tommy's Autism diagnosis being stronger than his Down syndrome diagnosis. Tommy has totally developed affinity with everything related to music including his voice for singing. He has a melodic voice for signging and can copy the high pitches on a song, including the ones in The Star-Spangled Banner. The way to get into his world is through music. The best way for Tommy to learn language is through songs. The best way to introduce a new concept is through songs. This is why at home and at school we sign for everything we are teaching to Tommy. Even for route counting, school uses song so 

Tommy can count at the tune of the songs. He is even learning the Pledge of Allegiance through the song of Lee Greenwood! When he was learning to recognize sight words, he could recognized them by picking the cards; howsoever, I knew he could say the words. So I began to sing the words and Tommy immediately began to read his high frequency words. We are also using visual resources to support what we teach through music, but the first choice is music. 

You may have seen this video before,
But you probably didn't pay attention on the way
 Tommy is reading. He is signing the words!

I will never let you down

"I will never let you down" were the words I promised to Tommy when he was an unborn baby. I promised this to him on October 31, 2007. It is going to be exactly seven years. I keep that promise stick to my heart, it is what give the perseverance I need to find ways to help Tommy.

Today, I received a phone call from United Mitochondrial Disease Foundation. For the first time, I talked to someone knowledgeable about this issue, and for the first time, I felt I am being understood. The possibilities Tommy can have mitochondrial dysfunction are there. Now, I found the right sources that will lead me to an answer. This foundation will put in contact with other moms, who are passionate about this topic like me.

God is listening to our prayers!

A roller coaster of emotions

In the last 2 months, it has been like a roller coaster of emotions for me. Many family events that truly made me tumble, I guess because there were too many at the same time. My mom had a car accident and her ankle got split. She couldn't have surgery right way, so she had the surgery on September 26 (Exactly, a month and a day after the accident). She is recovering really good. A week after my mom had the accident, my grandma began to have issues with her heart, which ended in a stroke. Days after the stroke, she got diagnosed with a sever pulmonary illness. I  talked to her oh Thursday, she is in a good spirit and feeling better. There also some issues at my husband's work that are keeping us a little concern.

At the same time all this was happening, God began to make his wonder by listening to our prayers to heal Tommy. We are just blessed that we find a doctor that goes beyond the standards as well as a great therapy for Autism, Mendability. I truly cannot put in words what I am experiencing with Tommy. I just can say that He is rediscovering the world. I know that there is still a lot to do to help Tommy, but I think the window to pull him out of Autism may not be locked anymore. This has been like the light of a candle among all the darkness around me.

While I am so happy for Tommy, I am a little concern for Francis. He is developing seasonal allergies and possible food allergies/sensitivity. It just started two weeks ago. This is when sometimes I think things happened for a reason. If I wouldn't know about Autism as much as I know now, I wouldn't be aware that if Francis is developing those conditions there is common factor which is the underline cause candida overgrowth/internal inflammation.

• Seasonal allergies causes inflammation in the lungs that lead to Asthma. Sesonal allergies is a symptom of candida overgrowth. I noticed Francis different wendsday night. He was extremely tiered to the point he felt asleep on the floor (not normal for Francis). I am glad that it was raining and the storm woke him up, so he came to our bed. A few minutes after he felt asleep, I realized that he was wheezing, Not good! He was in the yellow zone, the warning zone before an asthma attack. Because I already when through this with Tommy, I knew what to do and the wheezing went away.  
• Food sensitivity has a slow reaction, which began to create internal inflammation in digestive system. But this internal inflammation may be caused due to candida overgrowth that leads to yeast infection, which causes Licky Gut Syndrome. This is when antibodies pass to the blood from the digestive system straight to the brain. This is the reason why Licky Gut Syndrome is linked to Autism in a developing brain.
  
  My charming boy!

ACTION PLAN

1. Prayers: They always are the number one in the list of my action plan. I feel much better knowing that my mom is healing really good and that my Grandma is feeling a lot better. I will keep praying for everything is not going in the right path, so everything comes back on track.
2. Hard Work: I will keep my hard work with Tommy, but I am keeping in mind that I will accomplish as much as it is possible and when it is not possible, there are many things I can do in our daily routine to keep stimulating him. I am so glad that we decided to transfered him to the new school. He is adjusting really good! 
3. Be proactive: I am a little concern for my precious boy Francis, but at the same time, I know what to do and how to treat it before it becomes a problem. We will hire the Nutritionist that helped a lot when Tommy was in his first year of Autism diagnosis. Nutritional intervention may be necessary depending on the food sensitivity test results. The only issue is that Francis is not a good eater as Tommy. I will also make an appointment with his pediatrician to request a Stool Analysis Test to get the treatment. I am 99.9 %, it will come back positive for candida overgrowth. I know how candida looks like. Francis has also complained several times that his tummy is hurting. My mother's instincts never fails.
4. Resting: I am resting more by trying to go earlier to bed or taking short naps on the weekends. I need to recharge more that before of the roller coaster of emotions. I have to keep myself healthy to keep going in my journey with my boys.

THE SKY IS THE LIMIT!