Photo by dedicatedrider (photo taken about four months ago)
Today we're talking to this mom about her experience and daily life.
dedicatedrider, you're a busy stay-at-home mom with a 20-month old son, an 8-month old son, and a third child on the way. In addition, your oldest son Philip was diagnosed with Down Syndrome at birth. What is your daily life like in general?
Probably not as different from most people's as you might think. I take care of my boys, take care of the house, and in my spare time, I get on CafeMom.
What special challenges do you face daily due to Philip's special needs?
Due to his developmental delays, Philip only just started walking about two months ago, and even now, he still needs to be carried when we're out of the house. It can be a bit of a trick to carry two children at once.
However, Philip is actually the easier of my two children. Philip has always been a quiet, independent, easy-to-please child. My second son Marshall is a very high-demand child, having to be held almost constantly, crying, shrieking, etc. Marshall can be just as happy a little boy as his big brother, but he becomes unhappy and fussy very, very easily. They are both very young. This could change in the future, but at this point in life, I find Marshall to be much more difficult a child in comparison to Philip.
Does Philip have regular medical or therapy appointments inside or outside your home?
Philip had weekly appointments with an occupational therapist before we made a recent move out of state. The move was in the past month, so I'm still working on getting everything set up and arranged since our move.
In any case, occupational therapy was one day a week, an hour session. It's pretty low key, mostly therapy through play. His occupational therapist used play to help him with the two things that we'd set as his goal in his IEP. She worked with him on fine motor skills, such as isolating a single finger to press a button and stacking blocks and on speech, through reading books, singing songs, and teaching sign language while playing.
I always sat in on sessions at least to observe and often participated, as well as kept the therapist up to date on the new progress Philip made throughout the week when she wasn't present.
How are you coping with these challenges on a daily basis?
My life isn't much different than the lives of other mothers.
In the last 20 months, you've surely learned a lot about Down Syndrome. What's one thing you'd like other moms to know about raising a child with DS.
Children with Down Syndrome are a whole lot more like typical children than they are different. There may be unique challenges to daily life because of their diagnosis, but there are unique challenges with most children.
Do you have any favorite groups here on CafeMom where you have found a place to talk to other moms about Down Syndrome or raising a child with special needs?
There are many groups here on CafeMom that pertain to Down Syndrome. Larger groups will generally gain a quicker response for someone in a hurry to get answers to questions. All are wonderful and hugely beneficial for anyone to find answers to questions, or support. One non-specific Special Needs group that I've found to be especially close-knit and welcoming is Moms Helping Moms with Special Needs Children.
I'm always happy to talk to other moms about Down Syndrome or answer questions. Just send me a message.
What about you? Do you have a child with Down Syndrome or special needs? What is your experience and daily life like?