Once I had the chance to breathe, I was able to look up various websites that specifically apply to down syndrome. Two websites are nationally based - the National Down Syndrome Congress (www.ndsccenter.org) and National Down Syndrome Society (www.ndss.org). These websites were good starting points to just learning about down syndrome but frankly, after surfing through the sites, I was just overwhelmed. For me, it may have been selfish but I just needed to focus on my son and not statistics.
So that is what I did - I just focused on being a mom to my two kids and meeting their needs as best as I could. Of course, that did not mean I didn't seek advice or help for my son. In fact, our physical therapist was very helpful in suggesting tools for him.
One of the tools that our physical therapist recommended and that I would recommend to any parent of a child with down syndrome is Hip Helpers. These are shorts that are made of the same material that you associate with tight biker shorts, but what is so great about them is that the inseam is sewn up so that the baby's movement is restricted to spreading his legs only hip width apart. The shorts really helped since my son has low muscle tone (something that is apparently a common for babies with down syndrome). Check out www.hiphelpers.com. Even now, when my son's flexibility seems a little too much, I slip the shorts back on him for a couple of hours to help him.
Something else that I just love is Baby Signing Time. These are dvds where sign language is put to music. Since my son loves music this has been a great help. The tunes are catchy and help the entire family learn sign language. We initially bought this for our daughter but continued using it with our son. The dvds are sold on Amazon.com as well as on www.babysigningtime.com. Knowing sign language has been a tremendous help in communicating with our son. Even as he has started speaking, we still use sign language to aid us.
Tuesday, April 19, 2011
One day at a time: My first post
One day at a time: My first post: "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 s..."
Monday, April 4, 2011
My first post
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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