As a SN family, do you have support? What type?

[HarperRose]

I wrote a blog article about support last night. I wondered: What is YOUR experience with support and your child/ren with special needs? Do you have family that helps out? Respite programs? Friends? What's the best kind of support for your family? What would you like to have for support that you don't have now?

Our experience:

We've had respite programs in the past, but not currently. I'm not aware of any in my area.

Family does not help, largely due to distance, but also because they just don't quite know how to work w/ my oldest.

We don't have friends that help out, but we do have friends who are supportive emotionally and accept our family the way it is.

Best kind of support for us: babysit the kids for a few hours so my husband & I can get some time to ourselves and watch the littlest for me so I can work.

[bandgeek]

My mom is absolutely wonderful.  She's has been able to watch DD many times, even just for a few hours.  She's not experienced enough to do a whole day or a weekend, but I don't doubt she could learn if it was totally necessary.  I have a handful of friends that would jump in if I asked them to.  In fact I did have one friend keep DD overnight before so I could go to an amusement park.  She has a DD with the same diagnosis, so she was able to handle everything. 

We also get 91 hours a week of in-home nursing care.  We have 3 nurses.  One works 55 hours a week, the second one picks up the rest, and our third is our back-up in case the other 2 can't work.  The first nurse is one of my best friends.  She's done some off-hours work as a favor before.  And our kids play together, so if I'm at her house and the kids are playing, I can run up the street for food and leave DD with her, without her even batting an eye.  If DD is in the hospital, she will come sit with her if I have to be somewhere else.  The second nurse isn't really my "friend" (we are friendly enough, but we don't hang out off-hours) but her DS and my DS have been friends for about a year (since before she became our nurse) and we are comfortable calling each other up and saying "hey can you keep my kid for a couple of hours?".

I do feel like I have a big family of helpers surrounding me so it's awesome. :-D

[HarperRose]

Originally Posted by bandgeek 

My mom is absolutely wonderful.  She's has been able to watch DD many times, even just for a few hours.  She's not experienced enough to do a whole day or a weekend, but I don't doubt she could learn if it was totally necessary.  I have a handful of friends that would jump in if I asked them to.  In fact I did have one friend keep DD overnight before so I could go to an amusement park.  She has a DD with the same diagnosis, so she was able to handle everything. 

We also get 91 hours a week of in-home nursing care.  We have 3 nurses.  One works 55 hours a week, the second one picks up the rest, and our third is our back-up in case the other 2 can't work.  The first nurse is one of my best friends.  She's done some off-hours work as a favor before.  And our kids play together, so if I'm at her house and the kids are playing, I can run up the street for food and leave DD with her, without her even batting an eye.  If DD is in the hospital, she will come sit with her if I have to be somewhere else.  The second nurse isn't really my "friend" (we are friendly enough, but we don't hang out off-hours) but her DS and my DS have been friends for about a year (since before she became our nurse) and we are comfortable calling each other up and saying "hey can you keep my kid for a couple of hours?".

I do feel like I have a big family of helpers surrounding me so it's awesome. :-D

Wow, you have an AWESOME network! That's so great! 

I'm kind of jealous. :p LOL

[AllyRae]

We have 2 children on the spectrum and one with an immune deficiency and food protein allergy.  Other than some really awesome therapists for the two on the spectrum, we go at it alone.  We don't have family in the area, our county's tapped out on respite, and there are no real close friends or anyone to take them for a break.  It's ok for the most part although a break or some additional help would be awesome some days.