Sophia’s First Words

I have always known Sophia to be extremely intelligent. The difficulty for me as her father has been the frustration of trying to prove her abilities to others. Sophia has always been able to communicate to us by the different tones she uses with her voice. To others listening to her I can understand how the sounds and pitches Sophia makes may just seem to be meaningless noise. To me one sound means “change my diaper”, other sounds can mean “the battery on my DVD is flashing can you plug it in?”, “I need someone to flip me”. There is a definite sound for “Jackson” and “I Love you”, “Mommy” and “Daddy”. It is funny sometimes Catherine and I will finally sit down to watch TV together and we can here Sophia calling. Immediately Catherine and I know by the tone whether it is for Mommy or Daddy. Sometimes Sophia is too tired to speak with her voice so she will answer questions with 1 blink for “Yes” and 2 blinks for “NO”. It all depends on her mood at that time.

This has been our challenge since all of the specialists want to see Sophia communicate in the same manner every time they see her.  Sophia is only 2 years old and anyone who has had a child knows how hard it is to get any child to follow the rules at that age. Sophia is a real character and when you ask her really simple questions that bore her she will just roll her eyes at you. Many of her therapists attribute this to Sophia’s nystagmus…….but Catherine and I chuckle inside because we know what she is doing. If Sophia really wants something she will lock onto it……..and no matter if the Sky is falling and how hard you try to get her attention she will just ignore you. She is just such a sweet little girl who knows what she wants!

I started to battle the system for a communication device for Sophia before she was even a year old. Over and over I would breach the topic and things would become quite heated. We tried to convince them of just how smart Sophia was and that she could do much more than they understood. On every occasion I was told that realistically these processes for communication devices are not started until a child reaches 3 years of age. To me as a parent …….that is way too long. After all children try to communicate very early on in life even though it may not be words or sentences. For us……. Sophia having the ability to clearly communicate to her parents was extremely important. We needed Sophia to be able to tell us what was wrong………… for her own safety. What is hurting? Is it her stomach or her teeth? Is there a plug blocking her airway?  Nevertheless we were informed that we must wait till Sophia is 3 years old!!!!!!!

Last week we called a “Team Meeting” with our Early Intervention services. We kind of felt after having them for 2 years in our home we have come to a plateau. We have a great group of people working on Sophia, and we know just how much they deeply care for our daughter. However we wanted to see Sophia “pushed” a little harder. We often find we as her parents are trying new therapies and ideas on her and we  wanted EI to bring new ideas to the table that challenged Sophia as well. One of her therapists finally agreed to bring in an eye gaze communication device. We were told many times that even at 2 years old Sophia would not be able to grasp the concept of this device. Well, …….the other day as the representative for Tobii was setting up the equipment he made the big mistake of leaving the unit on…………………..before he could get the equipment stabilized on the stand Sophia was not only activating the device but she was going in and switching screens and finding other programs. They actually had to block the sensors until they were ready  to prevent Sophia from having access. The truth is………the night before I had a conversation with Sophia and I told her how important the next day was. That this was her opportunity to show everyone just how smart she was at 2 years old. Sophia did not disappoint…..and she proved to everyone just how much of a normal little girl she was! We will now be getting  a rental to make sure the Tobbi is the best device for Sophia!

Comments

  1. Terry Gaynor says:

    Vin, that’s amazing!!! It’s great that they are developing software to enhance communication skills. I can’t wait to see her use it! I was laughing at the rolling her eyes when bored, she definitely is a character lol! I hope you went shopping!!! She wants another LaLaloopsy doll! PS I’ll come by next week to bring her one, I can’t this week because I have a cold 😉

  2. Teri Taylor says:

    She’s amazing. And this equipment is awesome!!!! Now I know what we need to work on next!!!! TAKE THAT GIRL SHOPPING!!!!

  3. Laurie Peters says:

    What a beautiful story. I have a 2 1/2 year old, Lydia, with SMA, type 2, also and once she gets her mind set to something it doesn’t change either. I am so happy to hear that she proved them wrong!!!! Go Sophia

  4. Not sure if you’ve seen our site lately. Look like ours we be coming shortly as well
    It’s pretty cool though and great to see her using it.

  5. You guys that IS fantastic! Vin and Catherine the sound of your voices say it all. What a priceless feeling to have Sophia communicate in this way. You need to take that little lady shopping! Love to you guys! Technology opens the doors for so many different reasons. What a blessing.

  6. Christine Hicks says:

    I am absolutey amazed by Sophia as always. What an amazing little girl. Oh
    and she definately gets the eye rolling from our side of the family LOL

  7. Michelle O'Dwyer says:

    Oh wow, that is incredible! Sophia is a genius, there is no question about it. Now LET’S GO SHOPPING!!! LOL!

  8. janet apfel says:

    I cant wait to take Sophia shopping….so adorable. Priceless and your voices tell all the love you have in your heart. I had no doubt Sophia is brillant! Congratulations and keep up the good job. Love aunt Janet

  9. YESSS~~!!!
    Continue to do this~parents know what their own child can do~!
    Offering choices, and letting them ‘communicate’ in any way they can:
    as you do…is so great for Sophia!
    ~*~*~*~THE POSITIVE RESULTS ARE EVIDENT~!!!
    LOVE,
    michele

  10. Cassandra Martin says:

    I waited all day to get home and watch this! So wonderful. Sophia, you are so smart! We can’t wait to meet you next time you’re in WI. Big hugs from all of us!

  11. Jen Peters says:

    That was great, so excited for you and Sophia!!!

  12. Jennifer Calafiore says:

    This is great! I cried the first time Hayden got to demo the eye gaze. It will open a whole new world!

  13. WOW! I really didn’t realize how amazing Sophia’s first words were until I watched other videos of Eye Gaze and other similar eye tracking programs…the training on these things take days, weeks, months!!! This video in really incredible! I saw on one video, and you guys have probably already thought of this but in a video of a boy named ‘Aiden’ they created new fields for him to express his feelings, sad, happy, etc. I was thinking how great it would be to do this for Sophia an maybe even put body areas so she could tell you if her tummy hurt, etc. I am a new Mom of a now 11 month old, she was our 4th and final attempt at parenthood. So, her middle name is Grace. We are so blessed to have these angels amongst us and in our care for however long we have them. I know as a new Mom though (my Katelyn Grace has had some health issues, all minor) but the hardest thing for me is not knowing what hurts and the feeling of helplessness that goes along with that. I hope this new machine opens up new doors and breaks down the barrier to communication. God bless you and your family. Tricia

  14. Christine MacPherson says:

    This is so wonderful! Go Sophia! So happy for her and your family! I am sure you can’t wait to hear what else she has to say!

  15. love it!

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