A few years ago, my son's occupational therapist at the time, who herself had a son with special needs, offered these words of wisdom: "Get your team together -- those doctors, therapists, caseworkers etc who will collaborate with you in helping Max reach his potential." It took me a while to understand, and to fully appreciate, those words.
Max sees several specialists on a regular basis. In addition to his pediatrician, he is also followed by a gastroenterologist, a neurologist, an opthalmologist, a pulmonologist and a surgeon. He currently receives OT, PT and Speech, on a weekly basis, as well as feeding therapy. When Max became sick this fall, and required rehospitalization (for the first time since NICU discharge), we chose to be admitted to Childrens Hospital LA. And, it was at that time that my husband and I decided, with our pediatrician's support, that we would transfer the majority of Max's specialists to Childrens Hospital. And, in so doing, we were creating our team of doctors who could work together to address Max's somewhat complicated medical needs. (Our pediatrician, who we absolutely love, likes to use the phrase "He has too many issues to go anywhere else....")
So we have this medical team; but in addition to that we also have a wonderful group of therapists who are involved in Max's life on a weekly basis. These people have had an incredible impact on Max's development, and have greatly improved his quality of life. while doctors sometimes have a tendency to see only the diagnosis, or the immediate medical concern facing them, these therapists continue to treat my son as a whole child, and that is such a blessing.
But, of all these people, I would have to say that the people who have been the most significant members of our team have been Max's special ed teachers. The teacher from his early intervention program is now a family friend, and continues to be involved in Max's life. I credit her with Max's very early enjoyment of "school". Through her use of sign language, she helped Max develop confidence in his ability to communicate his needs through sign. For me, Max's ability to communicate offered a glimpse into his mind and that was of great comfort.
His current teacher, a wonderfully gifted woman, has offered me the opportunity to witness a different side to my son's personality. With her guidance, understanding and insight, I am beginning to see a more mature little boy; one who is capable of reaching out and having his own special relationships with significant people in his life.
Thank you, one and all, for reminding me that I am not on this journey alone!