A Third Grade Angel

This video reminds me of a little girl in my son's class who helps him with social skills at school.  Every afternoon she comes down to my son's contained classroom to color with him, play with him, and even read to him.  He lights up at the sight of her but he has never told me about her....because he can't.  I do hear about her from his teacher and how wonderful she is and how much she looks forward to helping him in the afternoons.  I have wondered what her parents think of her helping my son out and if they have any idea of how special she is and how much this means to me.  Kids don't typically notice my son for how wonderful he is.  They just notice that he can't communicate with them and that he doesn't interact with the way they would expect.  They are tolerant of him but aren't sure how to interact.  But Katelyn is unique.  She's as a third grader who sees beyond the usual expectations kids have of each other and meets my son where he is and stays there with him.  This is an amazing ability for a young child since usually those who try to interact with my son soon give up.  I am grateful for any effort a child makes to talk to my son and understand the challenge of trying to interact with a child who won't look at you, won't talk to you, and has no idea of how to play with you.  But Katelyn is more persistent than that and though I have yet to meet her, I know she is an exceptional little girl and I'm so grateful for her for being in my son's life.
I visited my son's special education room on Valentine's Day and had lunch with my son and his friends who also spend most of their day there.  Its a small group of about 4 kids with their one on one aides and the special ed teacher.  They all had pizza, fruit, and cookies for dessert.  I was witnessing my son in his world that he can't tell me about.  One thing I love about my son is that he is himself no matter where he is and just because I was there he was still himself for his teachers.
As we ate pizza I chatted with the other teachers.  It was nice to hear about the cute things my son has been doing in class or with his peers.  One thing I noticed was how much of a conversation we could have as adults.  The other kids ate quietly while the adults talked.  All of these kids had severe language delays and the contrast to a typical scene with third graders screamed in my ears louder than their silence.  Such a different world and for a moment I was reminded of that.
My son's special ed teacher then turned the subject to Katelyn.  She showed me a Valentine's Day placemat she helped my son make.  It was a butterfly made out of hearts and glued onto a piece of paper that was laminated.  She said that she met her mom and she shared with her mom all that she was doing with my son.  Her mom mentioned that every time they are out shopping and she sees Toy Story stuff Katelyn thinks of my son and starts talking about him.  The Toy Story movies and characters are an obsession for my son right now.  That warmed my heart.  My son's teacher said as she shared more about what Katelyn is doing with my son it made her mom cry.  I guess she does know how special her little girl is.  I hope I get to meet her.  I'd especially like to meet her mom and just thank her for her little girl and what she is doing in my son's life.

When I think of the next generation of therapists and special education teachers I think of her and hope.     

Socially Alienated - Living off the social "grid"

I remember when my son was just a baby going to play groups with him and watching other mom's talk while their babies crawled around the room exploring toys and watching each other.  I resigned from my corporate job that I loved to be a stay at home mom and I was really missing that connection with other adults.  But at these playgroups, my son would always begin fussing and he would be so clingy that I couldn't do anything but sit and hold him.  It was difficult to have any conversation over his crying.  He was about 9 months old at the time and after several attempts at playgroups, I realized that it was easier to sit home where he was happy rather than try to have a conversation over his crying.  I didn't know that he had autism at the time but his consistent crying and fussing in social groups was a clear indication that he was different.

I gave up on those early play opportunities and chose to invite over one or two friends who had kids and kept these play times at my house where my son was the happiest.  It was here that I watched their kids learn to walk and then run even before my son knew how to crawl.  My two best friends both had boys within 3 months of my son's birth and while they discussed milestones and first words, I watched my little 13 month old struggle to do the things a six month old could do. 

Then it was time for pee-wee soccer and t-ball.  We passed on those opportunities as well.  For a child who has severe delays with gross motor skills and cannot communicate or interact these weren't activities that would even be possible for him.  So we'd hear from friends of how well their little ones did in those games.  It felt like they were pouring salt into our wounds.  Did they even know how much it hurt to not be able to go to these games on Saturday mornings with everyone else?

It came to the point where my friend's kids abilities exceeded my son's abilities.  There was little we could do all together and whatever we tried to do we'd be alone in the far corner of wherever we were so my son wouldn't stress out.  Over time I saw my friends less and less.  I don't blame them but it is just something that happened.  We'd get together when we could but we were so restricted in how we could get together that the opportunities didn't come up as often.  They were meeting and hanging around with the parents of the kids that were at the playgroups and at t-ball.  Their kids played together and did sports together and suddenly they were getting together for more play dates and birthday parties and Sunday BBQ's.  We were left behind and I knew that from hearing them talk about their weekend in casual conversations.  We'd also see pictures of their fun and "normalcy" through emails and Facebook that we wished we could be a part of.  


We'd try visiting playgrounds to meet new people and kids.  This didn't work either because my son wasn't comfortable climbing on the equipment and with his balance and coordination it was just dangerous.  I'd try to force him to climb a ladder to go down a slide but all he'd do was cry at my effort to make him have fun.  And if there were a lot of kids on the playground he'd run as far from them as possible.  He'd prefer to be circling the fence that surrounded the playground which was always far away from everyone else.  So while other parents stood watching their little ones play on swings, monkey bars, and slides, I followed behind my son as he circled the perimeter.

There was one time at the playground where a kid was wearing a shirt with the number 10 on it and my son actually went up to him and pointed to his shirt and yelled "TEN".  The boy wasn't sure how to respond to that so he looked at my son, looked at me and continued to play.  My son was obsessed with numbers at the time and continued to follow him...up the stairs and down the slide while constantly trying to get another glimpse of the number 10 on his shirt.  I was so happy...he was using the equipment!  It totally freaked the kid out and he went crying to his mother but if only he knew that was the first time he actually noticed another child on the playground.  I was so proud of my son and wished all the kids on the playground wore a number.

There were BBQ's and birthday parties we were invited to but it increasingly became more difficult to attend these.  We were the ones furthest away from the activities trying to keep our son from either bolting outside or away.  We'd try to keep him with the group but he'd fuss and pull away as if we were torturing him.  I guess we were by forcing him to be with people.  Anytime we went to a social event, he wanted nothing to do with it and would escape and try to wander away.  Both my husband and I would have to take turns watching him.  He couldn't be left alone for a second since he was (and still is) so tactile and would get into everything.  At other people's houses we couldn't let him drop their breakables or tear through their drawers or cabinets.  Whoever had the duty of keeping him safe would end the evening completely stressed and exhausted.  We learned quickly which homes were somewhat safe for him to visit and which ones we completely avoided.  We also decided to never go to any outdoor event again after almost losing him.  I thought my husband was watching him while he was thought I was watching him and that's how we almost lost him.  It was a friend who noticed him running into the woods.

So our possibilities for socializing became very narrow.  We had a lot of requirements.  "Is it an outdoor event and if so will it be fenced in?  Does your home have baby gates and childlocks?  Do you keep breakables and houseplants around the house?  Are all your electrical outlets covered because he likes to obsess on plugging things in and out of them.  Is it okay if he puts all your kid's toys in his mouth because he doesn't know what else to do with them.  Do you mind if he stuffs everything he can find into your DVD player while obsessively turning it on and off?  Because if all that is okay then we will be able to actually come and perhaps socialize.  Otherwise you'll just see us chasing our son around so he doesn't get into anything or break it.  Oh, well never mind, its too tiring and stressful to chase him at your house so we'll just stay home at ours so we can relax."

And then there is school.  Our son was in a contained classroom with other peers who also have disabilities.  I was eager to meet these parents and form relationships with them because of course I'd have so much in common with them.  Well in the special needs world there isn't open houses, school plays, or anything like that.  There is HIPAA.  HIPAA is what prevents teachers from telling you the names of the kids your child hangs out with all day in school.  What I got instead were daily notes for my non-verbal child on how his day went and what he did with his "friends".  I'd get notes like "He was so cute today.  He gave his friend a hug." or "Today he said hi for the first time to his friend." It was a long time before I figured out which specific "friend" I kept reading about that he really liked.  This "friend" held his hand while they did circle time together.  This "friend" and my son always liked to sit beside each other at snack time.  And this "friend" always gave my son a hug when he was having a bad day.  I finally figured it out when I forgot one day to pack my son's snack and when I entered the school I saw the cutest little boy with down's syndrome sitting beside him doing arts and crafts.  His eyes were on my son trying to get his attention and when he looked up at him he would light up with a smile.  And then I noticed that my son smiled back!  A real connection!

So I learned to be more aggressive in learning who these kids are.  Other parents get to find out who their kids are hanging around by listening to them tell what happened in school.  Their kids can SAY the names of their peers who they like best and who they don't get along with.  I have no idea if a kid is behaving in ways that I wouldn't want my son to be exposed to because he can't tell me.  At least with a verbal child they can tell you.  So I learned to linger in the parking lot of my son's preschool and wait until other parents arrived to drop off their kids.  I'd walk him in at the same time they walked their kids in and left when they left.  I'd begin with talk about the weather and soon we talked about our kids.  The next thing I knew we were getting together for play dates.

When my son entered kindergarten things changed and more isolation set in.  He now rode the school bus to school and I wasn't able to meet parents as easily.  So what I had to do was have a birthday party to have these kids (and their parents) over to my house.  I want to know what these parents are like and what their kids are like.  So I asked my son's teacher if I could send blank birthday party invitations to his classmates.  She got the parent's permission first and then I sent in invitations with our information.  She filled in their names and sen them home.  She said 10 invitations would be enough to cover all the kids.  We got 10 RSVP'S!!!

It worked and they all came!  And the best part was meeting these other parents with the same social challenges that we had.  We talked while our kids ran around safely in our fenced in back yard.  We had gluten free and casein free food and cake for all the kids.  And no one passed judgement when a few kids needed their diapers changed.  There was handflapping, repetitive phrases, and even personal space being invaded.  While my son went to the furthest corner of our yard to escape another child joined him to do the same.  HIPAA didn't win this time.  Its rare moments like these where being in the presence of other families with kids who have special needs that makes you sometimes like "living off the social grid".  There are no rules, disapproving facial gestures, and best of all there is freedom.


Those of us raising children with special needs are often feeling alienated by our children's disability.  If our kids can't handle the stress of navigating a social environment, we are forced alienate ourselves from many of these opportunities.  We are also alienated by our friends when our kid's disabilities get in the way of being able to socialize.  And lastly, we are alienated by the system which tries to protect the privacy of our children and their disabilities.

We live off the social grid of society.  We struggle to stay connected.  We work harder to get there but when we do we are stronger.