I'm a mom with a 2 1/2 year old boy who has down syndrome. I am posting and blogging for the first time.
My son was diagnosed with down syndrome five days after he was born. My husband and I were in shock and I never truly had a chance to grieve the boy that I thought I was going to have. Through the whirlwind of the first few months, I was left with barely enough time to breath much less process what my son's diagnosis meant and what that would mean to our family life. Every time I told someone my son had down syndrome, the words were followed by silent tears that rolled down my cheeks - tears that I could not stop even if I tried. Now there are no more tears, just a little boy who loves being a younger brother to his older sister and a reality that is truly normal.
I am blogging to share things that have helped us and my son and that would be potentially helpful for other parents with a baby that has been diagnosed with down syndrome or other special needs. Of course, my suggestions are merely that - suggestions.
So I will start at the beginning.
First, we use a spiral or hardcover notebook and 13 pocket expanding/accordion file.
The notebook we bring to every doctor's appointment, from the pediatrician to the cardiologist, ophthalmologist and every other "ologist" in between. We enter the date of the appointment and the purpose. We also write out a list of questions that we have for the doctor so we will not forget to ask anything and provide space for the answer. If it is our first visit we make sure to get a business card that we later tape onto the first page. If the doctor has more than one office location we make sure to note that too. We also used the notebook for our meetings with the state social worker (called a support coordinator) who we met and subsequent therapists.
The expanding file (you might want two) I made labels for each type of doctor (heart/ear/eye) and also for each therapist (physical therapy/occupational therapy/speech) and a separate label for our state agency. The expanding file is so helpful because all the documents we receive from each doctor's visits and the progress reports from the therapists are all together. It's also where we put our Individualized Family Service Planning reports that we receive from the state support coordinator every 6 months.
Using both these methods have been very helpful since we can easily reference in our notebook what doctors we've seen (each doctor always asks about the others) and what treatment if any our son is receiving.
Well, this is much longer than I anticipated for my first post so I will end here.
My son was diagnosed with down syndrome five days after he was born. My husband and I were in shock and I never truly had a chance to grieve the boy that I thought I was going to have. Through the whirlwind of the first few months, I was left with barely enough time to breath much less process what my son's diagnosis meant and what that would mean to our family life. Every time I told someone my son had down syndrome, the words were followed by silent tears that rolled down my cheeks - tears that I could not stop even if I tried. Now there are no more tears, just a little boy who loves being a younger brother to his older sister and a reality that is truly normal.
I am blogging to share things that have helped us and my son and that would be potentially helpful for other parents with a baby that has been diagnosed with down syndrome or other special needs. Of course, my suggestions are merely that - suggestions.
So I will start at the beginning.
First, we use a spiral or hardcover notebook and 13 pocket expanding/accordion file.
The notebook we bring to every doctor's appointment, from the pediatrician to the cardiologist, ophthalmologist and every other "ologist" in between. We enter the date of the appointment and the purpose. We also write out a list of questions that we have for the doctor so we will not forget to ask anything and provide space for the answer. If it is our first visit we make sure to get a business card that we later tape onto the first page. If the doctor has more than one office location we make sure to note that too. We also used the notebook for our meetings with the state social worker (called a support coordinator) who we met and subsequent therapists.
The expanding file (you might want two) I made labels for each type of doctor (heart/ear/eye) and also for each therapist (physical therapy/occupational therapy/speech) and a separate label for our state agency. The expanding file is so helpful because all the documents we receive from each doctor's visits and the progress reports from the therapists are all together. It's also where we put our Individualized Family Service Planning reports that we receive from the state support coordinator every 6 months.
Using both these methods have been very helpful since we can easily reference in our notebook what doctors we've seen (each doctor always asks about the others) and what treatment if any our son is receiving.
Well, this is much longer than I anticipated for my first post so I will end here.
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