Boston Babies

Local parents with disabilities?

Just wondering - are there any Boston area moms or dads living with disabilities (or chronic illness?)

I've asked at a few local groups and I've heard of a few come through over the years but haven't found any group or meet-up specific to parenting with chronic illness/disabilities besides support groups for people living with mental illness.

I'm physically disabled and use a wheelchair. I have several other friends with kids in chairs, but no one local. I figure there must be others! 

 

 

Re: Local parents with disabilities?

  • Hi, I have rheumatoid arthritis.  It is pretty well-managed with medication. When I was off the medication during my pregnancy and while breastfeeding, it was horrible. I eventually had to stop breastfeeding so I could take my medication and enjoy my new daughter. 

     What type of modifications have you had to make to care for your children?  I think there is a definite need for more education and adaptive gear for people with disabilities and illnesses.  For example, what about clothing without snaps and buttons? Or play surfaces for children that aren't down on the ground?

  • Hi Again,

    I just looked at your profile- I'm an earthy, crunchy mom too.  And I work in your field of study (sort of).  I work for a non-profit that works with the states on air quality issues.  We do cloth diapers and all that jazz too.

     

    -Alli

  • play surfaces are a huge thing! I'm moving and excited about the playground there, but my biggest fear is her going to the top of a slide and refusing to come down. one of my friends kids lost her paci at mcdonalds playland when she was 8 mo pregnant so she couldn't crawl into the ball pit to help find it. Stick out tongue

    I got KAFOs (leg braces) that will be HKAFOs after I deliver (hip, knee, ankle, foot orthotics) so I can stand to get her out of the crib. I'm having bars installed on her wall near the crib to pull up on like what handicap bathrooms have. 

    plenty of other modifications too - like getting a different wheelchair with different positioning to  be able to hold the baby easier.

    Plus I need a childcare plan for hospitalizations. I'm trying to justify a breast pump to the insurance so I can pump while hospitalized and pump & dump if on meds short term that aren't safe. I need a milk stash for when I'm too sick.

    I should make a list some time of everything.

  • Hi I don't have disabilities but my Daughter does. We're having the hardest time finding support in our area. 

    I have a ton of experience in fighting with healthcare about getting a breast pump. If there is a lactation center at the hospital you're in they should let you borrow one or rent one during your stay(s). Mine was covered after my daughter was born I had them write me a prescription that said I needed one due to latching difficulties (which was the truth). I know other women who got theirs covered with the same type of prescription even if the baby didn't have latching issues. 

    Diagnosed with ML type II at 1 year, a progressively destructive disorder. Baby Birthday Ticker Ticker check out my blog http://mommaskye.blogspot.com/ Expecting a little boy! Diagnosed with ML type II at 19 weeks Pregnancy Ticker
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