Parents with Children Who Aren’t Special Needs Don’t Understand.

I have a lot of friends.

That’s probably because I’m loyal to them and true to myself, but that’s a blog post for another day.

Some of my dearest friends aren’t understanding my current position, and that hurts.

“Why can’t Josh watch Tori while you go out to my late-night birthday party?”

“Why can’t you just leave Tori to cry herself to sleep and get her out of your bed?”

“Why don’t you ever go out to visit anyone after 6 pm?”

I’ve been faced with a lot of those questions lately, especially as Tori is getting older.

Here’s the thing: Tori’s sensory disorder makes things different. There’s a difference between catering to your child and making sure your child feels secure and continues to trust you.

Since Tori was six weeks old, the only way to ensure she slept soundly is to make sure she’s cuddled around Mama. At first I did this because it made breastfeeding easier. I was also doing it because I needed to sleep more than twenty minute stretches at a time in order to go to work in the morning.

As time went on, both Josh and I realized that the only time this child would get any actual sleep is when we held her.

Yes, I tried leaving her in her crib. (No, I don’t believe in cry-it-out methods). I tried putting her down drowsy, doing things in the room . . . the way this child would cry was *not* a normal cry. No, folks, she was truly distressed.

In the meantime? Yes, it’s disappointing I can’t go out and party with my friends on occasion (although I’ll readily admit I’m ready to leave that part of my life behind). Yes, I’m disappointed that if my friend is having people over at 8 pm that I can’t be there because I’ll be in bed. Yes, Josh feels terrible that he’s unable to help me nighttime parent.

But you know what? Tori will only be this age so long. Before I know it, this time in her life will be a distant memory. It won’t be long before she’s cursing me and wanting to move out of the house with one of her boyfriends.

:: sigh ::

What will last a lifetime? The sense of security and love that I’m giving her.

Simply put, the next time someone gives me shit about staying in and cuddling with my daughter instead of hitting the town, spending money I don’t have, and getting drunk . . . they can kiss my ass.

Preschool Already?! Eek!

Last Wednesday our beautiful daughter started preschool. I’m so proud of her. I’ll have to tell you all about the first few minutes of her first day shortly – but first some background.

You may remember the blog post I had a little while ago fearing that Tori has autism. We’ve learned a lot working with Tennessee Early Intervention System (TEIS) through the recommendation of Tori’s pediatrician. What we have found is that Tori does not have autism, but has a delay in her communication development and in her social skills – and she has a sensory processing disorder.

As far as the delays, we’re not concerned about them, per se – I didn’t start talking until I was nearly two years old, so Tori having very few words at 19 months doesn’t worry me yet. We’re not surprised about her social delay because she stays at home with Dad during the day and doesn’t have the opportunity to meet friends.

But what about the sensory processing disorder? What it means, in a nutshell, is that Tori senses things differently than we do. She enjoys rocking, bouncing on the couch, and being tossed around up-side-down because she loves the motion and its sensory input. She doesn’t like having water in her face during hair-washing because the sensation is too much for her. She doesn’t like having her fingernails clipped because of the sensation of having the ends or joints of her fingers squeezed. She used to crab-walk on some surfaces because she didn’t like the textures of linoleum, hardwood flooring, or grass against her knees.

What this boils down to is that Josh, Tori, and I will be working with an occupational therapist to help her acclimate to these sensations so that they don’t bother her as badly. Our goal is to make her more physically comfortable in the world around her.

That brings us to the original point of this post – Tori’s first day of preschool.

We walked her in for her first day at Project Help and then went back to the observation room they have behind a double-sided mirror. We watched as she sat down quietly for her snack, waited her turn, and then went off to play. She immediately made friends with the little boy sitting beside her and started mimicking his actions – they looked like they were doing the wave! The little boy raised his arms in the air and lowered them – then Tori did – then he did again – and so did she.

We didn’t stay very long and left so that I could get to work. At the end of her morning, Josh picked her up and got that day’s report card. She did exceptionally well her first day! Yesterday she wasn’t feeling very well so she didn’t do as well. They reported that she was fussy and cried a bit, but I’m not surprised. I’m sure that the days will get easier as she’s there longer.

She’ll be going on Mondays and Wednesdays between 8:30 and 11:00 a.m. While she’s there, Tori will have peer models that will help her with her social skills and communication. They’ll also work with her on her sensory issues there. Josh and I are very excited to be working with the teachers at Project Help! (Pictures of Tori on her first day of school are soon to follow.)

Many Questions

I think we’ve become paranoid.  I hope we’ve become paranoid.

It seems like no matter where we look, there is always another reference to autism.  A boy I used to babysit is high on the autism spectrum.  There are commercials for autism awareness, charities . . . one of our favorite shows, Parenthood, portrays a couple raising a teenage daughter and an autistic son.  I’m resenting so much autism awareness.

Does that make me terrible?

I’m resenting autism awareness because now I look at my daughter every day and wonder if she’s showing signs.

We had thought that Tori had said two words around 11 months old, but she hasn’t said them since.  Language regression can be a major red flag.  I think, however, that Josh and I have talked about it and decided that we only thought she was saying those words.  Maybe she was just making sounds but had yet to make the connection.  Regardless, here she is at over 15 months old and she has yet to say anything.  Instead she points and grunts at everything.

To be fair, I didn’t talk until nearly two years old . . . and until I did talk, my means of communication was pointing and grunting.  So . . . maybe that can be explained away.

But she’s also making repetitive movements.  She obsessively rocks and bounces her back against the back of the couch.  I do mean obsessively.  Sometimes her rocking becomes quite intense.  I looked at some videos of autistic children stimming – and in some of them I saw the same movements my beautiful daughter makes.  That makes me more concerned than anything, I suppose.

Last Thursday Josh and I took Tori to her 15-month appointment.  We were certainly hoping that doc would listen to our concerns and then say, “Oh, you’re fine!  Kids do that.”  Instead he furrowed his brow.  He used the words “red flags”.  He referred us to TEIS – Tennessee Early Intervention System.  We’re supposed to get a call from them sometime this week so that they can do an in-home assessment on Tori.

For now I’m trying to remind myself that autism, a spectrum disorder, can be really mild.  There are a lot of autistic people on the lower-end that are more than high functioning – they are intelligent, wonderful, delightful people to be around.  I’m trying to remind myself that early intervention is key – that autism, when diagnosed and treated early, can be a bump in the road but nothing more.

I’m also trying to remind myself that I’m likely paranoid from all the images I’m seeing in regards to autism.