What Does a Special Needs Parent Need From a Friend?

I feel like this title could be a song on Sesame Street…haha.  I think one thing that people don't want to ask about, or maybe they don't know how to ask, is what the parents of special needs kids need.

Here is my list.  Please know this list is not the same for all special needs parents.  Ask your friend what they need ❤️

1. Patience - We are usually way absorbed with Olivia and now Christopher added on top of that.  Just trying to continually think about all the things to do with spina bifida see my post here on our extra SB life bonuses.  Then we have normal life/ toddler stuff plus baby stuff.  We want to be friends, really!!  (Hear the desperation?!)  Please ask us to hang out a few times, or send that text again if we miss it, or the email, FB message, etc.  That being said, don't be surprised if it takes us a while to get something on the calendar. (And yes, we need to calendar it.....)

2. Please don't stop asking us to do things.  Due to the sheer exhaustion each day, (bath time takes a lot for a 25 lb kid that can't stand or walk on her own, just saying) we kind of like to just sit around at home.  Wait, you like that too??  COOL!!!  Come on over :)  Bring the kiddos!  We have a guest room and they can totally sleep.  We can play Cards Against Humanity and we will can drink beer!  We actually go out a lot but so often we don't do it with other people, unintentionally, Haha.

3. Please understand if I don't respond to the new trick/ therapy/ thing/ toy that is amazing for special needs kids.  This one is tough and I feel bad, but honesty really is the best policy.  I do find out very cool things from friends and I do love reading new info.  That being said, I prefer to read them on my own time/ not have to respond right away.  Many times they come when I just can't think about that at the moment so reading it on my own time allows me to take it in and truly read what you are sharing with me.  FYI usually I don't respond except with a "cool" or "awesome".  It's not you, it's me ;)

4. Listen, just listen.  Sometimes life is crazy and overwhelming.  Dr. appointments, physical therapy, occupational therapy, daily life, can all get to be a lot.  So I vent.  It is normal to want to help by finding solutions to problems.  While your suggestions are welcomed don't be offended if we don't take it.  Sometimes we just want to vent. 

5.Please encourage your kids to play with mine.  And they don't need to "be gentle" any more than they would with other kids.  I want Olivia to have experiences with both abled and non-typically developing kids.  I want her to see the excitement when your kiddo runs around the room, as that may motivate her.  I want her to see that she can have fun, no matter the pace.  And I want her to feel the love of friends, because we all know how critical friends are.  Like you - you are FUNDAMENTAL to our lives ;)  Just saying'.  I want Olivia to have that too.  If our kids get along and make each other happy, please just let them play.

6. Know our kids are just the same except different.  She has feelings, can hear when we talk about her, and understands EVERYTHING.  But she does take longer to learn new physical tasks your kids (and probably you) take for granted.  At times the world if overwhelming for Olivia and I don't blame her.  She wants so badly to be like her friends and that takes more energy than her little body can exude some days.  Not all days - but many.

7. Your friendship.  When I am around friends that truly care about me and my family my cup rennith over - you know who you are.  Thank you to all those that fill my cup (over and over again) and help us get through the crazy and normal days.  WE LOVE YOU!!!!! XOXOXO



So I think that is it.

What do you need as a parent of a kid with special needs?

Be Happy.  Laugh.  Enjoy Chaos.