Down syndrome teen gets driver license

The philosophy of our family is "The sky is the limit". It is the way Clayton Marr, a teenager with courage and perseverance, got his driver license regardless his diagnosis of Trisomy 21 (Down Syndrome). He doesn't know limits and he got really high by reaching his goal and becoming the second – and youngest – New Zealander with Down syndrome to get a driver's license. Read the full story in Stuff, a newspaper from New Zealand.

COLIN SMITH/Nelson Mail

WHEEL EFFORT: Clayton Marr, 19, of

Waimea West, who has Down syndrome,

proudly displays his driver's licence.

As this teenager got the support from his family to try, Tommy will have the same support and encouragement from Adam and I to reach very high. Things have changed for our kids with T21! It is our duty as parents to learn from parents as Jeff and Sophie Marr to help our kid to achieve their independence. Clayton Marr has proved to us that "The Sky is the Limit."

Improving Gross Motor Skills

Because of Tommy is motivated to get mobile again, we are giving him more opportunities to get around with his bike and we are taking advantage of the nice weather. We took him to ride his bike this evening around the block, which has 8 houses, where the side walks are connected with a route that goes to the garages behind the houses. It is an easy and save way to go around the block over and over again while Tommy speeds on his bike. He was so excited chasing us. he didn't want to ride the walking bike a while ago; however, he didn't want to leave the bike this evening. He is getting very motivated to walk, he has done a couple of independent steps and we are encouraging him to keep trying.

Tommy's maniac face trying to get me

A little bit tired after two rounds

Tommy "The Explorer" in New York for St. Patrick's Day

Tommy is a lucky guy! He has been in more place than my husband and I when we were his age. We went last year to visit Panama, my mother land. Tommy "The Explores" went to several providences and met a lot of people. It was a great way to celebrate his first birthday. This year, we did a shorter trip to New York City to celebrate his 2nd birthday, but it was very excited as our first trip. Tommy enjoyed the trip to New York, the best part for him was riding the airplane. He loves the turbulence!

Tommy "The Explorer" in his way to New York

Tommy "The Explorer" goes to Time Square,

the first night in New York

New York is an amazing and exciting place, but what I liked the most is his people. New Yorkers were very friendly, specially to Tommy. It was amazing how a little kid in the middle of millions of people was like a celebrity! Everywhere we went someone smiled at him or say something to him. One day we were walking at night and Tommy was sleeping on the stroller, I saw a lady coming and she said to her husband: "Ohhh, look at that baby, he's so cute". The day we were celebration his birthday in T.J. Fridays, an old lady came to our table and she said to me: you don't know how lucky you are, he is extremely cute. Of course, Tommy has the biggest smile in his face. The day we went to Central Park, I heard an old man saying: "Waooo! He is a happy child". When I look, it was a homeless man. We smiled back to him very proud of our child and he said "he is a very happy baby". The homeless man talked to Tommy while Tommy was smiling and laughing at him. Other young Hispanic lady sat beside us one day we were taking our lunch and she said to Tommy: "Que Dios te bendiga" (May God Bless You) and she look at me and said: Tines un bebé hermoso, que Dios te lo bendiga" (You have a gorgeous baby, May God bless him). This people where God messengers for me, telling us: your son will be accepted and included because, as our first pediatrician said, "this guy has a great personality which will help him later in life."

Tommy 's greeting smile to New Yorkers

Tommy "The Explorer" have a great time in New York. Traveling is something he truly enjoys. We will keep planning a family vacation every year as much as possible because it makes us to enjoy each other and get out of the routine, while we area creating family memories and making our family ties stronger. We cannot enjoy a family dinners at the table as other families because of my husband work schedule. But when we are on vacations, we truly enjoy eating together as a family.

Tommy "The Explorer" eating breakfast

with his family

Tommy "The Explorer" hanging out with Daddy

Tommy "The Explorer" on the Subway

Tommy "The Explorer" still sleepy,

but eating his breakfast at the St. Patrick's Day Parade

St. Patrick's Day Parade

Tommy "The Explorer" watching

St. Patrick's Day Parade

Tommy "The Explorer" visits

Central Park Zoo. He was saying mooo, mooo

but the cow went away.

Tommy "The Explorer" feeds the animals

Tommy's favorite bird at the Central Park Zoo.

He thought the Toucan was his favorate toy stuffed animal.

His toucan stuffed animal makes a noise Tommy imitates

He did this noise as soon as he saw the Toucan in the glass cage.

Tommy was fascinated with the pigs and ducks.

Tommy "The Explorer" had a great time, so do we!

We love you the way you are

Since I was pregnant, we loved our son without limit. When we knew about his genetic condition, we supported him because he was part of our family even although he wasn't born. We provided a healthy diet to strength his development during his fetus stage. We stimulated him with a prenatally stimulation with sensory stimulation; even thought, we didn't know Kids with Trisomy 21 (T21) may have sensory processing problems. But we unconditionally supported our unborn baby loving him the way he was. Two years have passed after our son was born and we haven't let the syndrome taking our son over because it is something he has, it is not what he is. We enjoy our son not matter what. He is smart, happy, cute, funny, persevering, hard-headed, healthy; in other words, he is just a perfect child!

Raising our child with T21 is what "normal" is to us (the word "normal" is a tricky word). It is stressful some times, but it is rewarding all of the time. After all, it is what parenting is all about. What it is normal for us may not be normal for others. He is not walking yet, but he enjoys many things as other toddler, such as: brushing his teeth on the step stool, learning to watch his hands, helping to dry his hair after bath time, helping to put the dirty cloth in washer machine, sliding in the slide as any toddler, playing his little trumpet and blowing bubbles, pretending he is a boxer, scrabbling, riding his tricycle, saying (signing) "mine" when we take a toy away from him, saying mama or mom when he needs help and then some. It doesn't stop him to impress us of how toddlers can be young genius. As my husband says: "The sky is the limit". Our son doesn't know limits and we don't limit him, we just believe in his potential. It's the way we are, this is our NORMAL way.

We are not worried about the future because we cannot know the future. But we can influence the future if we give him all the skills he needs in the present. I do believe all kids with or without the syndrome have abilities. How we stimulate our son today will help him tomorrow. Stimulation is A LOT OF LOVE, FIRST CLASS CARE, GOOD NUTRITION, PLAY TIME and a LOVING FAMILY. After all, STIMULATION is the most important for any child. We keep dreaming about our son's future. We will be there to support him in every stage of his life, not matter how long it will take us to get there. The most important is to get there. We have seen people with T21 being successful in our society that let us to see the new generation of people with T21 with more opportunities and inclusion than ever before.

We put in practice what we have learned in the Catholic faith, Not to Judge Others. If we judge our son's abilities because he has T21, we are dining him to growth as a person. Instead judging him, we give him the opportunity to try. He will do everything he wants to, but it may be in his way and own pace like all of us. We will give him the opportunity to drive. I have known about a teenager with T21 who is learning to drive and other young people with T21 who are driving. It took me 2 years to drive, ha, ha ha. It wasn't because I am not smart. In fact, I didn't study during my first school years because the teachers' explanations were enough. I was an honor student during my entire school years. I was the valedictorian when I graduated from the University with the highest GPA among all the Faculties. I graduated from my master with a A+; even although, my English wasn't that good. But, I also do things in my way and own pace.

Dealing with the fact our son has Trisomy 21 is not what gives us a hard time. Dealing with the fact there are sources out there that can help our son even more, but we cannot afford all of them is what make us frustrated and sad sometimes. If we would be rich or win the lottery, it would be the only way we can afford all of them. But we see the big picture, as parents, we are already doing everything we can. We already know all those sources and we cannot get them right away, but it could be possible we can get them later because Tommy is still little.

God has blessed us in all ways with our son and we are witnesses of the marbles God can do. We thank God every day for giving Tommy a good health regardless the syndrome. We believe God have chosen us to parenting his little angel because he knew we would unconditional love our son because any scarified would be enough and any challenge would never be a predicament.

"⁴Love is patient, love is kind. It does not envy, it does not boast, it is not proud. ⁵It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. ⁶Love does not delight in evil but rejoices with the truth. ⁷It always protects, always trusts, always hopes, always perseveres.

⁸Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. ⁹For we know in part and we prophesy in part, ¹⁰but when perfection comes, the imperfect disappears. ¹¹When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me. ¹²Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

¹³And now these three remain: faith, hope and love. But the greatest of these is love."

1 Corinthians 13:4-13

Keeping the faith in God and the hope in our son are the most powerful therapies for our souls. When we knew about our son genetic condition, I didn't ask God for a miracle. I asked God for Wisdom to find the right tools and the best way to stimulate my son and put in our path people who would believe in our son's potential. I asked for strength and comfort to surpass any challenge may come. We have accepted the mission God has given to us; we don't want to change it because we love our son the way he is.

Happy Birthday, Tommy!
We love you the way you are.

Tommy's Birthday Party

Tommy will turn 2 this week and we had a small party with our intimidate family yesterday. We have been very busy that we didn't have the energy to plan a big party as we did last year. Tommy's 2 birthday party was fun and cozy. I am making a tradition in our family and the tradition is that every birthday party will have a theme; therefore, the decoration, cake and outfit have to be according to the theme. The theme this year was "Tommy, the bug catcher". His cousins dressed up as a butterfly and a lady bug. I designed Tommy's t-shirt and my mom gave him the outfit. My sister-in-law help to decorate the living room very festive and creative. My mother-in-law did a caterpillar cup cake, which was the attraction in the party. Tommy's great-aunt did a delicious fruit salad and my husband was the chef, the barbeque was amazing. Tommy got nice presents and we are so excited to play with them this morning. We have a great time yesterday!

The Lady Bug, the Bug Catcher and the Butterfly

Polo Shirt Design by a proud mommy

Cup-Cake by my mother-in-law

Birthday Cake by a local bakery

Happy Birthday, Tommy! We are very proud of you.

You are an amazing child.

CHiPs returns / El regreso de Patrulla Motorisada

New Words!

This is very exciting! There are new words: apple, car, bye bye, hola (hi in Spanish). We are having just a little bit of trouble keeping Tommy saying the words he knows.  He says them for a while and he completely stops saying them for weeks and even months until we hear them again. According to our ST, this is very typical and we should keep repeating these words.

We are working with him in cause and effect, if I say something and I can get this. We are using his milk as a motivator. For example: We say Tommy say the word "milk". If he says something close to milk or at least a sound we give him the milk. We tried today and he said "kah" and when I repeated "milk", he said: "me". Translation: Milk. Then, we gave him the milk. We have to do it for a week until Tommy gets used to it. Our ST suggested a voice activated toy as other way to motivate him to keep saying the words he knows. We got one for his birthday and we are exiting to see how it will work. 

We have slowed down in working with the sings, but he has learned two new sings: me/mine/my turn and cracker. He is using mine very often when we take a toy away from him. He uses the sign for "me" when we sing Pat a cake; when we read Panda Bear, Panda Bear what Do You see? to complete the end of every sentence in English and Spanish; and when we ask to him ¿Quién es mi bebé? (Who is my baby?). I haven't seen him signing for "my turn". He signed cracker while I was putting his pajamas on tonight. After that, I asked him several times "sign cracker" and he did. We haven't worked on this sign, but he learned it by watching the videos. I will keep teaching new signs to him, but our focused is to motivate him to say the words he has said. 

May My Son be a Mystery Diagnosis?

It is the first time, I am going to write about my suspicion that my son may be a mystery diagnosis. I decided to talked about it as a way to begin my celebration of the Genes Day, The World Down Syndrome day on March 21st. 

When I emailed to our families and friends announcing I was expecting a boy with Trisomy 21, I explained to them that the doctor's diagnostic was very optimistic. Now, the therapists confirm this optimistic diagnostic every time they say Tommy is accomplishing some age appropriate milestones. When I met our Developmental Therapist, she made a comment that I will never forget. She said that Tommy's main problem was more physical than cognitive. A few days ago, I was talking to our Developmental therapist about enrolling Tommy in a preschool that has a program for special need kids. She said I should be careful what school to chose because she was concerned they won't be able to understand Tommy's needs because Tommy's cognitive level is for a 2 year old kid; even although, he is not walking. This has increased my suspicion that Tommy may be a mystery diagnosis.

This is the picture of the ultrasound during the amnio.

For my surprise, I am not the only one that it is suspecting this. I went to a meeting last year with Moms who have kids with Down syndrome and one the moms met Tommy before the meeting. When we were talking about our kids, she asked me: Does he have Mosaic Down syndrome? A Pediatric Nurse who has worked with Kids with Down syndrome saw pictures of Tommy and I explain to her how Tommy was doing. Her first question was: Does he has Mosaic Down syndrome? One day, I was talking with the PT, who does the Aqua therapy for Tommy, about Tommy's progress and She asked me: What is his diagnosis? Does he have Mosaic Down syndrome? I was surprised they knew about Mosaic Down syndrome because this form of Down syndrome is not well known in the world. Since I was pregnant, I had the suspicion that my son may be a mystery diagnosis, but by then, I didn't know there are three forms or variations of Down syndrome. The three genetic variations that can cause Down syndrome are:

Trisomy 21. More than 90% of cases of Down syndrome are caused by trisomy 21. A child with trisomy 21 has three copies of chromosome 21 — instead of the usual two copies — in all of his or her cells. This form of Down syndrome is caused by abnormal cell division during the development of the sperm cell or the egg cell.

Mosaic Down syndrome. Children with mosaic Down syndrome have two distinct cell groupings. In some cells there is a total of 46 chromosomes, which is the “typical” group. In other cells there is an extra copy of the chromosome 21, making 47 cells total for this group.

Translocation Down syndrome. Down syndrome can also occur when part of chromosome 21 becomes attached (translocated) onto another chromosome, before or at conception. Children with translocation Down syndrome have the usual two copies of chromosome 21, but they also have additional material from chromosome 21 stuck to the translocated chromosome. This form of Down syndrome is uncommon.

According to the International Down Syndrome Association (IMDSA), approximately 1 in 27,000 people are diagnosed with mosaic Down syndrome. Approximately 15% of individuals diagnosed with Trisomy 21 Down syndrome are misdiagnosed and actually have mosaic Down syndrome. There are many individuals who are never diagnosed with this condition. The differences between the Trisomy 21 and Mosaic Down syndrome are unknown because there are not enough scientist researches studying this type of Down syndrome.  

The possibility that Tommy was misdiagnosed is there because there were not enough tested cell to determinate if he has Mosaic Down syndrome. Retesting him is the only way we can confirm my suspicion. Right now, the most important for us is to stimulate our son as much as we can because the extra chromosome is there. One day we will talk to our son about his genetic condition. When this moments arrives, we will talk to him with the right information and not with a mystery diagnosis. 

There are many genetic disorders in the world that we even don't know, but as humans we should celebrate diversity. Diversity enriches our lives. Recognizing our similarities and understanding our differences is the best way to defeat prejudice and intolerance to create a more peaceful world where we all are included.

Celebrate Diversity!