Stories from friends

It is so wonderful to know that we are not alone on this journey.  It helps so much to hear stories from friends and share in their struggles and victories.  Sometimes, though, they recount experiences that I find so painful, so frustrating, that I wish I could just swoop in and take all their troubles away.  These are two such stories, from two of my in-real-life friends.  I share with their permission, and will let their stories speak for themselves (in italics).  The first is from a mother whose daughter has been diagnosed with an Autism Spectrum Disorder.

Have you every physically felt your heart break?  I did last weekend…

We were up at the Lake and three older kids came near where we were so ”Amber” starts doing the edging closer thing.  I could see how much she wanted to join in and didn’t know what to do.  She poked one of them and made him jump and everyone  laughed.  There she was laughing her fake loud laugh and saying over and over that she really got him.  I motioned her over and quietly reminded her of the questions to ask when meeting people.  She tried, but it was so painfully obvious it wasn’t working.  While the kids weren’t mean I could see they thought she was strange and they weren’t comfortable with it so they left.  I was physically pained and wanted to leave but thankfully another child arrived soon after and she was several years younger so they got along well.  God was looking after us both.

This is such an awful time now that she’s almost 13.  She doesn’t know how attractive she is to boys.  She’s like an 8 year old in this hot little body.  Boys are showing interest when they see her but after talking to her they leave soon after.  I’m terrified she might discover one day that her body is attractive in a sexual way and that there are ways this can be a tool to get attention.  I’m scared she might decide negative attention is better than none and do things she wouldn’t do otherwise.

Thankfully her self esteem is still good and she’s not interested in boys but I have to prepare for worst case scenario, lol!

… There really aren’t words to make the pain go away…I just cry in the shower.  I find solace that these are the kids who are going to grow up and do wonderful, innovative things to make the world a better place.

And another story that makes me SO MAD that I could… I could… I dunno… do something bad!  It is from a friend of mine who has one neurotypical older son and a younger son with Williams Syndrome… a lesser known Syndrome that is not readily apparent when you meet her child because he is so social and engaging.  This mother has encountered prejudice from insensitive people who had no clue that one of her children has special needs.

I had to really push for my son to be in an inclusive preschool setting and finally by the time he was 4 we made it happen — w/ a FIGHT  … I know what you mean about feeling self conscious about how the other parents feel… it’s uncomfortable for me STILL (even after almost 3 years of inclusion) being around other parents knowing some must have strong opinions.  I know some do b/c I’ve heard a few say things not knowing that I have a child w/ disabilities.  People are ignorant.  Hopefully time and change will improve that…

A few years ago I was in a playgroup for my oldest child and there was this stay at home Dad in the playgroup and I don’t even remember how they started talking about kids w/ special needs in school — but someone made some comment about how kids w/ special needs are put in “regular classes nowadays” and this Dad said “YEAH, whatever happened to the good ol’ days when those kids were in their own special room down at the end of the hallway”.  

I was mortified, my blood started to boil — but I didn’t say anything.  I think today I would say something to someone now!!  But back then my son’s diagnosis was still so fresh and I was still adjusting to the whole thing myself.   I’ve also had a mom tell me the reason she put her son in private school was b/c of how much public school’s have changed these days and one of her examples was how a special needs child was in her son’s class and how this child was “disruptive” and her son could not concentrate and therefore he did poorly in school.  

Another time I was out w/ some other moms for dinner and it was just before a new school year was about to begin and we were sharing info on the teachers our kids had been assigned, etc… and upon hearing which teacher one of the kids got, one mom responds by saying “that teacher is awesome, BUT I heard she’s the teacher that’s going to have the special kids in her class this year so she’s going to have a tough year this year w/ her class”. 
 
I can tell there’s this overall feeling from a lot of parents that when they learn their child has been placed in the “collaborative” class (the one that has the special needs kids in it) — I think they feel like their child’s education is automatically going to be hindered.  It’s sad.  However, I would like to believe that there are SOME parents out there that understand the value of having special needs children in the regular classroom w/ their own kids.  Anyway… sorry for the negative stories.  But yes… these stories stick in my mind and keep me very guarded around other parents when I’m at school functions.  People need to be educated on the positives of inclusion.