Getting back in shape

Tommy was improving a lot on his gross motor skills before he got sick with the RSV, but he had a regression due to the many days he was hospitalized without physical activity. He lost completely his balance for a few days and his balance it is not still as it was before. He also lost part of the muscle tone he gained after he started to walk. I never thought being on the the bed for many days would affect his gross motor skills so much.

According to our PT during her last visit, Tommy can reach normal muscle tone, but his trouble is keeping it. I am trying to keep him active as much as I can to get him back in shape. Today, I took him to the park and I got so happy because he used the swing for older kids for about 15 minutes and he didn't fall off and he could swing himself very slowly. He couldn't do this 6 months ago, so not everything is lost. He is gaining new skills somehow.

Tommy is simultaneous Bilingual

The dream for a great future for our son has never changed. Maybe along the way, we have to do modifications or adaptations to our expectations, but we always keeps our high expectations for him. The fact he has a genetic disorder doesn't discourage us that one day our son will fluently speak in English and Spanish. We were discouraged to teach Tommy two languages by a speech pathologist who did an observation on Tommy's speech development when he was 6 month old —an observation instead of an evaluation because he was too little for doing an evaluation. But nothing stopped me to keep improving Tommy's bilingual skills.


Tommy currently has the faculty to simultaneous translate from one language to the other, for example: When we ask him '¿Quién es mi niño?' (Who is my boy?) and he verbally has answered in English 'me' (yo) a few times and signs 'me' most of the time. The sign for 'me' was taught in English, never in Spanish. He doesn't answer the question in Spanish, but he knows the meaning in his dominant language, English. This confirms that his brain is making simultaneous translations. He also follows instructions in both languages. See the video below. 


Why do I teach two languages to my son?
Tommy is member of a multicultural family; therefore, he is simultaneously learning two language at the same time since birth and it is not by choice. When a child learns two languages since birth, he or she is considered simultaneous bilingual.


My family speaks just Spanish and my husband's family speaks just English. I cannot dinned one family or the other to communicate with him. Strong family ties are important for a child development; therefore, we won't exclude our son of enjoying his multicultural background just because he has Trisomy 21. 


Does bilingualism create language confusion?
The fear of many parents and speech/language pathologists is that the child would experience language confusion due to the exposure to two languages. According to a current research in this matter by Kendall King and Lyn Fogle at the Georgetown University, "the ability to switch back and forth between languages, sometimes called code-switching, is a a sign of mastery of two linguistic systems, not a sign of language confusion." Click here to read the full story.


Why bilingualism is beneficial for my son who has a genetic disorder?
I have solid reasons in thinking that bilingualism is beneficial for my son based on scientist researches. As we know, a person with Trisomy 21 is at a greater risk for dementia and Alzheimer. A recent research has found that being bilingual may delay Alzheimer's and boost brain power. According to a recently publication in guarduan.co.uk:

Learning a second language and speaking it regularly can improve your cognitive skills and delay the onset of dementia, according to researchers who compared bilingual individuals with people who spoke only one language.

Their study suggests that bilingual speakers hold Alzheimer's disease at bay for an extra four years on average compared with monoglots. School-level language skills that you use on holiday may even improve brain function to some extent.

In addition, bilingual children who use their second language regularly are better at prioritising tasks and multitasking compared with monolingual children, said Ellen Bialystok, a psychologist at York University in Toronto.

"Being bilingual has certain cognitive benefits and boosts the performance of the brain, especially one of the most important areas known as the executive control system," said Bialystok on Friday at the annual meeting of the American Association for the Advancement of Science in Washington, DC.

...switching between different languages seems to stimulate the brain so that it builts up a cognitive reserve. "It is rather like a reserve tank in a car. When you run out of fuel, you can keep going for longer because there is a bit more in the safety tank." Click here to read the full story.

What is the personal experience of other parents raising a bilingual child who has Trisomy 21?

"We went against the speech therapist’s advice because it was clear to us that our daughter understood both languages although she couldn’t, at the time, say a word. Actually she mostly made sort of barking noises J. I am totally convinced that using 2 languages constantly actually helped in the forming of the synapses in the brain. Bilingual children talk later anyway…I have 4 and my daughter is the youngest so I do have some personal experience. The older 3 all speak 3 or 4 languages and she is happy to read/write/watch tv etc. and chat in 2 and really enjoyed learning a third while she had the opportunity.

We live in a bilingual environment so there was no actual “learning” going on , just normal everyday behaviour i.e. everyone in the family and around us moved from one language to the next without thinking.

Often you are advised to have each parent speaking their own language…we didn’t nor did we sign. It all took time. BUT we got there in the end and she’s really pretty fluent in both and totally comprehensible."

~Harriet L.

My son bilingual skills has brought me to search for more information about bilingualism in Kids with Trisomy 21. There are not much information about bilingualism in kids with Trisomy 21 (T21). Howsoever, there are good enough information for me to continue teaching my son two languages at the same time.


There are much work to do in discovering better teaching methods for simultaneous bilingual children with Trisomy 21. Right now, most parents in the journey of teaching two or more languages to their children with Trisomy 21 just have the support of each other because the lack of understanding for many professionals that don't belive biligualism is benefitial for kids with Trisomy 21 because of the speech/language challenges. Howsoever, there are more professionals getting interested in bilingualism in kids with Trisomy 21. I think in 20 years from now many things will change in the benefit of multicultural families who are raising simultaneous bilingual children with a genetic disorder.

Enjoy the video of Tommy's bilingual skills

I have become a member of an 

online group of parents who have 

bilingual or multilingual kids with Trisomy 21.

"The sky is the limit."

Eligibility Meeting for Service through the School District

During the transition process, the evaluations are important to determine if a child will be eligible for services through the school district. In our case, things turned quite different due to Tommy being sick for many days so he couldn't attend to the evaluations. The school was also close for many days due to the winter storms. Therefore, the School district decided to take information from the progress notes and interview to our current therapists and us.


The eligibility meeting was held yesterday, February 16th, at 2:00 pm with the school district coordinator, the school psychologist, the school speech-language pathologist, a special need educator, a friend of mine, my husband and I. We went over the results of the Tommy's evaluations to determine what services he qualified for and how he qualified. It took about an hour and half to go through everything. The meeting was smoothly thanks to the pastries our friend brought to the meeting. The pastries broke the ice and honestly, they made feel more relaxed. I am thankful and please with the School District team for keeping everything according to the state law and beign flexible in gather as much information as the could even when Tommy was ill.


The psychologist who did the Developmental Assessment of Young Children (DAYC) got enough information from the progress notes, the developmental summary my husband and I do every 6 months and an interview with our current Developmental Therapist. Due to Tommy doesn't cooperate with his Development Therapist during her visits twice a month, some cognitive skills were considered inconsistent forcing the evaluator took points out. But due to my blog and videos I have, I proof he has these skills. Even the evaluator didn't give him points for the skills Tommy showed inconsistency with our Developmental Therapist, he didn't qualify for services in the area of cognition.


The Physical Therapist and the Occupational Therapist in charge of the physical evaluation got general information for the Peabody PDMS-2 and DAYC tests from our current Physical and Occupational therapists. According to the physical evaluation, Tommy needs services for gross motor skills because he has a significant delay in gross motor area. Meanwhile, Tommy's fine motor skills qualify in an average range. This means, he is not eligible for services in the motor area because he has to qualify in gross motor and fine motor together to get services in the physical area. But, the evaluators requested a re-evaluation because they need more specific information to complete the Peabody test. This left the door open for Tommy to be eligible in the coming weeks.


The Speech and language evaluations were measured by the REEL, GTA and PLS4. According to the results of the REEL test based on a questionnaire we did with the evaluator days before Tommy got sick, Tommy's language comprehension is in the average range. The evaluator was needing more information to complete the GTA and PLS4 tests; therefore, the speech and language evaluation was complete with Tommy a day before the eligibility meeting. Tommy didn't cooperate with the evaluator even she tried hard. Therefore, his combined score for receptive and expressive language skills went down making him eligible for Speech and language therapy services. Tommy's scores according to the REEL were consistent with a private pay evaluation we did when Tommy was 13 month. The REEL were used in both evaluations, so the evaluator realized the gap between Tommy's receptive and expressive language is consistent by keeping almost the same score, which is good.


Tommy will be re-evaluated for gathering more specific information about his gross and fine motor skills. He will also be re-evaluated for oral motor macanism because the speech and language pathologist couldn't gather any information because he didn't cooperate with her. The school district will also evaluate him for sensory issues because the evaluator concern on Tommy's odd tongue movements. Even, we did a private pay evaluation about a year ago and it shows he doesn't have sensory issues, I know deeply in in my hear he does. I am glad the school district pay attention to the possibility of Tommy having oral sensory issues.


We are happy with the results because they show how capable and smart he is. It is not my love to my son that talks about the many skills he has. But we are hoping he doesn't pass the fine motor re-evaluation, so he can get services in the gross motor, which is the area where he truly needs services. We are thrilled Tommy is doing so well!

Developing memory -Recognizing neutral colors

I started to introduce colors to Tommy since he was a baby because of my nature as a graphic designer. He currently recognized de neutral colors: black, white and gray. He also recognizes that Panda bear and zebra are two color animals, black and white. He is developmentally doing many things, even he is not able to verbally express himself, yet. But the fact, he understand what I teach him give me hope. One day he will fluently speak both languages, English and Spanish. Meanwhile, I keep helping him to reach his full potential.

Pouring -Pre-writing skill (Part 2)

By August last year, Tommy was practicing to pour from one cup while he was having fun because he laughed when he spilled the water.  I wasn't expecting him to improve this skills until he got older because of the hypotonia (low muscle tone). By last December, I noticed Tommy began to pour form one cup to other one while playing in the bathtub with a minimum spilling. He has gained a better eye-hand coordination because this activity.

Tommy pouring at his 34 months

Related Topics:
Pouring -Pre-writing skill (Part 1)

Nesting by size

Stacking by size

Wordless Wednesday!

Welcome Home!

Our scary days are over, Tommy is back home! But he went through a dramatic change since the first day he was taken to the hospital on the ambulance. It was hard for him to ride by himself because I have to drive my car. Once we were in the emergency room he had oxygen and machines hooked up to him and unknown people around him. A few minutes later, he was pocked in his fingers, toes, heals and arms because it was hard to get blood. But he is brave, he didn't cry at all, even I could see he was having pain every time the needle got into his skin.They took a sample from his nose and it came back positive for RSV. So the pediatrician in charge told me that Tommy would require more care what they could give him there. Therefore, he had to be transferred to a bigger hospital.

He was transported in a helicopter from the hospital near my house to the local Children's Hospital without me. The reason Tommy was transported on the helicopter it was because the Children's Hospital staff didn't want delays because of the storm that happened earlier that day, so they didn't know if the routes where cleared off enough to send the ambulance. Once he was at Children's Hospital, he went to the emergency room without anybody he knew because I was driving to get there. When I got there, they said he will be admitted to the hospital. When he saw daddy that night, he was happy. But he had to sleep at a new place he wasn't familiar with, but I stayed with him. But I think what truly scarred Tommy was on Saturday 22nd, the day he was transferred to the Pediatric Intensive Care Unit (PICU). Because of he felt asleep, I thought It will give me time to go home to take a shower and change my clothes. I left around 1:30 pm, so I got home around 2:15 pm. I was on the car at 3:00 pm to go back to the hospital waiting for my husband who was locking the door; then, our house phone rang. It was from the hospital telling us Tommy waked up and they were having problem keeping him calm down. They said that he looked everywhere around and didn't see us, and then, he went crazy trying to take the mask and all the stuffs he had over. When we got to the PICU, it was a very sad scenario. His condition was worse, so they made the decision to sedate him. Talking with other parents and the nurses, Tommy's fights was just a typical scenario of kids that get RSV and the sedation helps them to rest and fight against the virus.

After all the dramatic changes he experienced, he lost his balance for a few days because of spending more than a week on the bed. This happens to any adult or child who spends a week on a bed without physical activity. I requested a physical therapy as soon as I noticed his balance was completely off. A Physical Therapist came to see him on Friday 28th and he couldn't walk by himself. She said this is very common and told me how to help him to get his balance back and he was walking again on Monday 31st.

The poor guy went through too many changes at the same time and he is little to understand why he was there, so it affected his behavior for a few days. He was in a bad mood after he went back home, but he is back to his normal life. He is happy, exploring and learning new things since he came back and his bad mood went away. So we are extremely happy he feels safe again!

We couldn't be strong in those difficult moments

if we wouldn't have your support.

Our precious child is with us again thanks to

your prayers and the great care from the nurses and doctors.

_____________________

RSV is a serious respiratory virus that can be life threatening for children at risk. So it is very important to be informed, recognize the symptoms and know if your child is at risk of getting RSV. But even healthy kids over 3 can get a bad RSV. I met one little kid who was already three years old and didn't get into the consideration of a high risk for RSV, but he was rushed to the hospital in helicopter and transferred the PICU right away because of his critical condition. His case may be rare, but this proofs RSV is a serious life threatening virus that can severely affect any child. I will soon write about RSV and its consequences after it is over.

Elmo saved the day!

When Tommy was a newborn he didn't pass the newborn hearing test, which is required in our state for all newborn. The pedriatic audiology who tested Tommy at that time told us he wasn't concerned because it may be just fluid in his ears and it would go away in a couple of months. After this, we had to take him for a retest three months later and he didn't cooperate, so the audiologist couldn't complete the test, but she could test one ear. The audiologist got enough information from one ear to make sure he was hearing and because of his age at that time she wasn't concerned of not having results from both ears. We were not concerned either because Tommy was responding to his name since he was 4 months old and it was enough proof for us he was hearing.

Tommy has a high risk for hearing lost because of his genetic disorder, so he has a hearing test every year. Last year, he cooperated better than in the previous test. Both ears could be tested and the results were normal hearing.

This year, it was time to take Tommy to his annual hearing test and my husband took him for the appointment on January 17th at 9:15 am. Everything was going fine that morning until the test started. The test results were showing concerns for the audiologist and her assistance. After doing the test twice, he failed the test. They were questioning my husband and my husband began to be concerned about Tommy's hearing. Suddenly, Tommy said 'Memo' (Elmo) because he wanted his Elmo doll. Then the audiologist asked to my husband if Tommy liked Elmo and husband said: YES! The audiologist decided to test Tommy again using a test with the same sounds, but with an Elmo video instead of the dolls she was using. Since the Elmo hearing test began until the end, Tommy listened to all the sounds. The hearing test results were NORMAL HEARING.

I can imagine how many thoughts were through my husband's mind thinking something was wrong with Tommy's hearing. Tommy's selective hearing would have caused a lot of trouble because he could be misdiagnosed. This situation also proof what I have told my husband that Tommy has a selective hearing because my husband complains Tommy doesn't do what he asks for. According to the book The Wonder Years by the American Academy of Pediatrics:

"You'll find it amazing, however, that your three-year-old won't hear you when you ask him to put his toys away or get ready for bed, and yet he hears the start of his favorite song. Psychologists call this "selective listening" because in many instance, as child is making a subconscious choice not to respond; he inadvertently chooses to react to some things that he hears and to ignore others."

Tommy is going through a typical stage of a child development, so as parents we have to be patient and reinforce his listening skills toward what we ask for. A few thing we will be doing to guide his attention to what we tell him:

• To turn the TV or the radio off before requesting something to Tommy.
• To make eye contact when we are talking to him to reduce distractions.
• To say his name clearly and loudly when we will ask him to do something.
• To stop what we are doing and go close to Tommy and then talk face-to-face.

We all love Elmo!

Elmo saved us time, money and worries

by helping Tommy to past the hearing test.

In my way for a full recovery

We cannot explain our feeling of relief and happiness knowing that Tommy is alright. He is getting closer to a full recovery after almost two weeks of scary and stressful times.

The pediatric team met to analyze Tommy's case last week. They decide to do a breathing treatment, the same uses for asthma, to help Tommy opens up his lungs faster. After three days of intensive treatment, it wouldn't work and Tommy was getting extremely tired because he couldn't sleep thru the night because the nurses were waking him up every three hours, then his respiratory rate when crazy because it was constantly fluctuating.

The pediatrician in charge was following Tommy's case very close, she came on Sunday morning to know if the breathing treatment was working. She was hoping Tommy's respiratory rate was stable, but I told her it wasn't improving. She immediately noticed Tommy was looking very tired because around his eyes were red and puffy. She asked me if he was getting more sick and I told her he had three days without sleeping. So they realized it was being too much and then they tried to do the respiratory treatment without waking him up and Tommy could sleep; then, his respiratory rate when up and he began to keep it up. The poor guy was restless and he is not used it because he sleeps through the night since he was 2 months old, so the lack of sleep was shocking for his body.

The doctors were worried after 10 days Tommy was still needing oxygen, so the hospital met a team of pulmonary doctors to analyze Tommy's case because it may be the possibility of he could have a pulmonary issues because of his genetic disorder. But after doing new x-rays and revising his medical history through an interview with me, they got into the conclusion he doesn't have pulmonary issues. The two pulmunary doctors, who talked to me, agree he had a very bad RSV and it took him longer to recover. They told me it is not the first time they have seen a case like Tommy's. One of the pulmonary doctors said he will be fine in 2 or 3 days and it seems he was right. Tommy was without the oxygen most of the day yesterday and they just put 0.5 liters of oxygen when he went to bed. He has been out of oxygen the whole day today and he is keeping his respiratory rate up, so they will let Tommy sleep without oxygen tonight. If he doesn't need the oxygen tonight he will be realized soon.

Thank you so much for all your emails,

prayers and support. They mean a lot to us.

You can see the power of your prayers

in Tommy's pictures and videos.

Teaching healthy habits to Elmo

My best friend, Elmo, is with me everywhere I go

Dr. Tommy

Dr. Elmo

Someone needs a hair cut

I am a happy guy again thank to your prayers

and the intensive care from my nurses who

will remember me forever because

our constant fights.

I am in my way for a full recovery