Wednesday, September 25, 2013

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!

Tommy 'The Super Boy' Keeps rocking! (Part 2)

In my post from yesterday morning, I mentioned that Tommy's private paid OT thinks Tommy has the cognitive understanding of how to form letters, but his fine muscles don't respond as the should due to hypotonia (low muscle tone). Yesterday afternoon, I checked his daily report when he came back form school and his regular ed teacher sent his paper where he has been working on tracing the letter "T" for Thomas.

I haven't been working on tracing with Tommy as I should, so I can not take credit for this! He has learned it in his regular education class and with the reinforcement of our private paid OT, who
Tommy sees every two weeks. Due to his hard work on tracing, I will be getting more educational tools to work on tracing letters.

T H E   S K Y   I S   T H E   L I M I T !

Tuesday, September 24, 2013

Tommy 'The Super Boy' Keeps rocking!

Tommy is judged due to his dual diagnosis, but he is in this world to change minds. He is standing out by himself by showing that labels don't stop the amazing human been he is. He is going against his labels and he is ready to show us the true "Tommy."  Therefore, I am sitting back to watch him shining.

Sept. 19
"Tommy counted up to 14. He did it unprompted while playing during quite time." 
~Tommy's Paraprofessional at School 
She was so excited, surprised and happy for Tommy. She is becoming a witness of what I keep saying. Tommy knows a lot more of what he lets us know.

Sept. 19
"I know Tommy understands how to trace letters. He takes my my hand and follow the lines. He has the understanding of it"
~Private Paid OT
She is meaning that Tommy has the cognitive understanding, but his fine muscles don't respond as they should. Tommy feels more confident if he holds her hand, and then, he traces the letters. I know Tommy has the cognitive understanding for fine motor skills, which I have known for long time. It feels good other person can also see it. I have even cried with Tommy because I see his frustration, specially, after he regressed so much in fine motor skills.  I do believe what she is saying!

Sept. 20
"Tommy was saying the colors. We were walking to the bus and he started to say purple as we walked past the big purple truck. And then, I started to ask him what colors were and he named them."
~Text message from Tommy's Daddy.
My husband was very excited and proud of Tommy. I bet Tommy was so proud showing off to Daddy how much he knows. Tommy and Daddy has a special bonding!

I have the privilege of raising one of the most amazing kids in the world. A kid that shows me in very simple ways that miracles happen almost every day. I just feel my soul and my body are together again. It was very hard to witness Tommy's regressions and isolation, but I just feel joy for my son today. My action plan is working!


Wednesday, September 18, 2013

Tommy 'The Super Boy' receives the Good Student Award

Tommy's regular education teacher gives the 'Good Student Award' daily at the end of each day to the one student who shows excellent behavior and has worked very hard.  Well, Tommy earned it yesterday. According to his Regular Education Teacher: 
"Tommy has really been interactive and engaged in lessons this week.  He is flexible even when routines may change a little... He was very happy (clapping, smiling, and even jumping up and down a little) when given the award.  His smile definitely lights up the room!"

The reason I highlighted the words from his teacher about Tommy's excitement is because my son is a child who feels excitement for his accomplishments and deserves, as any other child,  to develop into a good man who follows his dreams. I have the privilege of raising 'a super boy' who stands out by himself with his charming personality and not by prejudgment based on his labels of Trisomy 21 and Autism.

I am his mom, but I don't own his life. I am just God's instrument to shape him into a good man and responsible citizen because he is a human been, as you and me, since the moment he was conceived. I don't judge him for his genetic disorder and just love him for who he is, my son. I AM VERY PORUD OF TOMMY!

Friday, September 6, 2013

"Play to Talk"

We started on September 2011 a new path with Tommy by dealing with his diagnosis of sensory processing disorder, and then, Autism, which isolated him from the world. Today, Tommy's isolation and withdraw seems just a bad dream thanks to the work of two dedicated child Psychiatrists, as well as, the guidance of expert moms on Down syndrome as well as expert moms on Autism, who I have personally never met; and recently, the implementation of an individualized neuro-developmental program, which evaluation was done online. Technology has open a door to get in a world of possibilities for my son's recovery. Neither his pediatrician, Neurologist nor conventional medicine has been involved in getting Tommy out his isolation. Why? When I turned to them looking for help, I didn't have answers for my questions or the guidance I needed to help my son. Here is when I discovered that the science field is divided, but the information is out there for the benefit of our kids, even when not all doctors are updated about it.

We have strongly been focused the whole summer on decreasing steaming behaviors and increasing interaction with the help of the book "Play to Talk." This is a great book written by Dr. James D. MacDonald, which provide strategies for in-home therapy by caregivers. The strategies are based on interaction because the most the child interacts, the closer the late talker child is to communicate, and then, to talk. This book gives ideas of simple forms of play to develop a play plan that can be done at home with your child during the family busy routine. This book has an assessment for your child, as well as an assessment for you because communication happens in two ways, so it is important caregivers and parents analyze how they interact with the late talking child for the child willing to communicate with them as communication partners. It also makes emphasis about how the environment influence in the child's withdraw, so you can understand why your child behaves different or withdraw in different environments, which helps to facilitate interaction in unfamiliar places. It also has recommendations to develop properly interaction with toys, which is crucial to get a child out of isolation. The books is written in a simple and practical manner for parents / caregivers to understand and follow through. I highly recommend this book!


Before reading Play to Talk, I realized Tommy is able to say many words and phrases, but not able to communicate, which is very typical for kids with Autism. I follow the work of Dr. Stanley Greenspan (rest in piece), who wrote the book The Child with Special Needs —a book I have mentioned previously in other post. Dr. Greenspan makes emphases in how Speech Therapist and parents rough a child to talk when the child is not developmentally ready and this is what causes 'echolalia' in many kids with Autism or other special needs. The child won't talk if he or she is not able to interact, it is just as simple as that. Dr. MacDonald also make a huge emphasis on this. Dr. Greenspan and Dr. MacDonald have help me to bring Tommy back from isolation through their books.

By the end of the summer, we are THRILLED that we see a child who is interacting with estrangers and participating in his regular education class. It feels good when he spontaneously uses his words to request iPAD, or when he goes to Daddy and gives Daddy a big hug and says: "MY DADDY." Or suddenly, he opens the freezer and request ICE CREAM. And recently, he has been requesting "KETCHUP" to put on his chicken. We have a lot to do in the communication area, but we are seeing "communication" coming along now that we have increased and regulated interaction.  When I say "regulated," it means to pay attention how I interact with Tommy by WAITING for a any kind of response from him. Just "WAITING" for any kind of response is making a huge different for  Tommy willing to communicate. SPOKEN LANGUAGE IS NOT NEED TO COMMUNICATE!


We get a note, almost everyday, that Tommy has participated with his regular 
education class.  Not bad for a child who used to isolate from his classmates.  
A child who cognitive skills are judged by his communication issues, but suddenly
he is showing at school he knows more than what was expected.

I realized that I am the link between Tommy and the world. So I made a portrait of Tommy, which is a summary of him showing how he is as a whole child. I described his skills and pointed to his needs rather than strengths or weakness as usual in a child's IEP.  I brought the summary with me to his IEP meeting two weeks before the end of the school year 2012-2013. This helped to establish a good Social IEP annual goal that supports what I am doing at home with the neuro-developmental program. By the end of summer school this past June-July, Tommy got 66% out of 80% for his social interaction IEP annual goal. This summary also helped me to go back in Tommy's development and make emphasis in non-verbal communication a his need due to his Autism diagnosis. So the IEP team agreed and they set an annual communication goal focused on non-verbal communication. I am putting the puzzle together and I am making Tommy's IEP part of my action plan. I recently update this summary and I will  share it with relatives, so everybody can understand Tommy as a child with skills and needs. My son is not defined as a dual diagnosis because a diagnosis is a label  that can be teared off and it is not the essence of a human been. For example: Tommy's asthma diagnosis was teared off by the same pulmonary doctor who diagnosed him. This doctor couldn't find any "symptom" that showed Tommy was asthmatic during a follow-up appointment, so he gave me a letter realizing Tommy from his asthma diagnosis.

We cannot get teared off his genetic disorder, but we can maximize his potential! Play to talk gave me the strategies I was needing to recover my son from isolation. I took me 2 and half years of dedication and sacrifice. Today, I am just happy because he is developmentally progressing!