Stay at Home Moms

Anyone have a " special needs" child?

I know there is a special needs board and I do go on there but lately I seem to spend most of my bump time here. I pregnant with a little girl who has Spina Bifida and im due in a few weeks. Just wondering what a SAHM day looks like when your child has a disability 

Re: Anyone have a " special needs" child?

  • DD has a bone disease that will cause her to break very easily and also may cause her to lose her hearing at, or around, puberty.  That said, she's just barely starting to crawl (scooting is more accurate and very slowly) so aside from being careful (which you would be with an infant, anyway), nothing is really different.  That will change when she becomes really mobile, though, and I'm just going to take one day at a time.

    Welcome to the board. :) 

    Warning No formatter is installed for the format bbhtml
  • Sorry to hear about your LO.  

    My oldest was born with a very serious, rare skin disorder that prevented her from going to daycare so I SAH out of necessity.  It was a hard transition.  There were tons of therapies (pt, ot, nutrition) plus doctor appointments.  Very intensive for me and my H but because I SAH I got the brunt of the day-to-day stuff.  I think every situation will be different and wish you the best.

    image
  • Loading the player...
  • Now, my day as a SAHM looks pretty "typical."

    When he was first born (with EA/TEF), we spent many weeks in the NICU going through diagnostic testing, surgeries and after discharge we spent MONTHS going to follow up appointments.

    It was very frustrating to have to put a normal life on hold for awhile so that we could make sure that we got through the hard parts while he was still young.

    Nowadays, he's up at 7:30am, he takes his daily meds, he gets a sippy of almond milk, chills on the couch watching Thomas while I make breakfast, and then the rest of the day is up to us.  

    I have a couple of friends that I've met through my EA/TEF Family Support Connection whose kids also have spina bifida.  Most of them are highly functioning.  There is a boy who is 11 years old now, and despite his many trips to CHOP for treatment (not spina bifida related), he is a very happy, thriving little boy.  

    Congratulations on your LO!!   

    Prudence
    Lilypie First Birthday tickers
    Otis
     Lilypie Third Birthday tickers
    Hank 
     
    Lilypie Kids Birthday tickers
  • My 2-year-old daughter has been diagnosed with developmental expressive language disorder, motor hypotonia, and developmental delay.  She has delays in her speech and language, fine motor, and gross motor skills.  She gets speech and occupational therapy 4 days a week, so we are pretty busy.  Plus we have appointments with various other specialists.  Since she needs to get treatments at three different locations, we can't put her in daycare yet so I drive her around.  I also like giving her lots of language stimulation to work on her skills.

    In the mornings we go to therapy.  We come home for lunch, and she naps for about 3 hours in the afternoon.  Then we play, make dinner, and DH comes home.

  • DS2 (22mos) has CP. He has outpatient and EI therapies and we have 3-4 therapy sessions per week (outpatient) and 1 session per week (EI - but 2 therapists come at the same time). So for us, our schedule is:

    Monday at 5pm, Tuesday 10:30 and 4:30, Wednesday 9am, and some Fridays at 4:30 are his therapies. At opposite times we do typical stuff - run errands, play at home, eat meals/snacks, nap. I don't normally take both kids out of the house for fun stuff like library time or the park because it just really isn't feasible for me and I always feel like I'm ignoring DS1 because I have to be with DS2 to physically help him with stuff. 

    If I have a doctor appt I try to schedule it for a Thursday and if that isn't possible or I need to get something else done that is easier without kids I get a babysitter. If I go to the gym then the boys go to the daycare in the gym.

    Really, outside of the therapy appointments I feel like a pretty typical SAHM.

This discussion has been closed.
Choose Another Board
Search Boards
"
"