Friday, February 28, 2014

Guess who's three!

It's been way too long since my last post and it's not for lack of trying. I've been constructing about three different ones in my head for weeks and just haven't had the time.

But now, I'm making the time because Wednesday was Tera's third birthday.  It's one of the most conflicting days of the year for me because I fall head over heels in love with my little girl again, I get to celebrate the anniversary of the day we met her, and also the day we became parents.  But, to be perfectly honest, it's also
the anniversary of one of the hardest days and week of my life.  It was the day that Down Syndrome came to mean something completely different to me, to us as parents, and to our family and friends.  We were no longer just people who had heard of or knew about Down Syndrome, we were now a family "affected" by Down Syndrome.   And at that time, I had no idea what that meant.  We were terrified and sad and worried about the little girl we just barely knew that had already been separated from us and hooked up to tubes and wires.

Fast forward three years and here we are.  I won't lie and say I'm not still scared sometimes, because after only three years into this journey, we still have very little idea of what the future holds for Tera.  This Tuesday marked the end of her Early Intervention services and as of Wednesday, she was eligible to start Early Childhood.  Last Friday Tom and I sat down with eight other professionals to listen to their suggestions on the best placement for Tera and to write the goals for her very first IEP.  Let me take a second to explain that from birth to three the plan is called an IFSP (Individualized Family Service Plan) because the therapies and strategies revolved around Tera's needs and the needs of our family.  At three, she changes over to an IEP (Individualized Education Plan) and she will become part of the public school system.


The meeting lasted almost two and a half hours and went pretty well.  I had tried to prepare myself as best I could for hearing that Tera is delayed in everything and I thought I was handling it pretty well until the program direction brought up the possibility of Tera being placed in the SEDOL school (which is the most restrictive option) because of safety concerns (her ability to walk up and down stairs, her tendency to dart off, not always following directions, etc).  After we explained that Tera does tend to "rise to the occasion" and will typically follow her peers, they didn't push it.  I also tried to make it clear that if she is in a room of kids performing below her, there is a very good chance she will regress.  I was happy that it was only brought up and that everyone else pretty much agreed that placement wasn't necessary, but I really hadn't prepared for it even being brought up.

She now has a thorough IEP with about seven goals that will continue until next February at which point we'll meet again and decide if she's met those goals and establish new ones, or if they need to be modified or continued.  Yesterday Tom did a walk through of the classroom and met with the teacher.  He did say he was a little surprised by how advanced some of the kids seemed to be (in comparison to Tera).  It's another thing I'm now slightly worried about, but I have to remember she'll be the youngest one in there, and they've all had a some time to adapt to the routine.  We also somehow have to train her in one week to leave a hat and gloves on and carry a backpack.  I'm a little more concerned about that part...

So as of right now, a week from Monday, my little girl will start preschool.  She will be on a van from daycare that will take her to the school, she will get off the van and into the building and start a routine I know nothing about and I'm kind of scared about the whole thing.  Our plan is to have Tom follow the van from daycare to school to watch to see how drop off takes place.  We're too worried about her freaking out leaving us to do the drop off ourselves because she's had some issues separating from us in the past six months (mostly into places she's not familiar with which of course this is).  I feel more confident in her transition from the daycare van and teacher to the new school, it just makes me worry because I won't be there to see it the first time.

There is really nothing I can do to prepare myself for how this goes, I'm just going to have to relinquish control and hope that everything goes the way it is supposed to.  And that she just blossoms suddenly in her new environment and proves to everyone that she is the delightful, smart, charming, sweet little girl I know she can be.

But it's really hard knowing your baby is starting something new, something for big kids, when she still seems so little to me.  I know she has to grow up and on some days I wish for it to happen sooner so some of these "stages" we're going through right now would be over and life can be "easier".  But I know I've hoped for that in the past and now I look back on those days and I miss them sometimes.  No parent has figured out how to stop time yet and I'm pretty sure I won't be the first one.

So I will take some time this weekend and try and enjoy the fact that she now has school supplies she has to bring, and pick out a snack for her to carry with her in her new Scooby Doo backpack, and that she will have this whole new experience to enjoy.  I will try not to cry (too much) on that first morning, and I'll try not to wait too anxiously by my phone for Tom to let me know it all went okay, and I'll try to wait patiently to call daycare when she should be back to make sure she really is back and safe and sound.  And we'll see if I am successful in any of those things...


Thursday, February 6, 2014

Bedtime. The dreaded, horrible, no good bedtime...

Wednesday night:
I'm currently listening to my child scream and cry hysterically from her room.  We put her to bed an hour ago.  We went through this for the second half of last week and then thought we had come across the solution: a light outside her bedroom.  It seemed to work like a charm.  We were able to put her bed after her nebulizer Saturday, Sunday, and Monday without incident.  Last night I had to go back up twice and then was finally able to sneak out.  Of course she then woke up later that night and Tom spent 45 minutes trying to get her back to sleep again.

Tonight we're right back to where we were last week.  She's literally screaming herself hoarse and almost to the point of throwing up.   If we go in there, she goes right back to bed and puts her head down and seemingly falls asleep.  But the second we try and leave her room, she's right back up again.  We've tried everything we can think of.  The light, soft music, no music, a stuffed animal, her weighted blanket, no blanket, sitting with her, letting her cry, giving her water, rocking her, etc.  We're at a loss and after spending an hour (so far, and what will probably be closer to two all said and done) we're exhausted.  It took me an hour to get to work this morning in the snow, it was a very busy, exhausting day, and then I came home so we could give her dinner, Tom could bathe her, I could pay bills, and now this.

I would venture to say, and I will grant you I'm being dramatic because I'm frustrated and tired, that there are few easy parts of this child.  She's not a bad kid by any means, she has her moments like most almost three year olds, but there aren't many things I would say are easy about her. Ok, she's a good eater, which from what I've heard can be an equally frustrating thing for a lot of parents of same-aged children out there.  And I'm not even claiming that she's the only one.  To all you other frustrated parents out there (and I know there are many) we understand.

The good old days.  She actually slept better as an infant...
The truly difficult thing for me to handle sometimes, is that it's not just that she doesn't do well at most other people's houses or in unrestrained areas of the public, or the new nightmare that is bedtime, or the throwing of things constantly, or her seeming inability to sit still, or that she's sick frequently, or that she has special
needs that need to be addressed by therapists which require evaluations, paperwork, emails, and appointments.  It's not any one of these things or more that I'm not remembering right now, it's all of it together.  And once again, I'm not by any means trying to say that she's not like a lot of other kids, I'm just saying it's hard.  Sometimes, it's really hard and I truly don't know how to handle it.  Like bedtime right now.

Thursday night:
I do believe we've come to the conclusion that she's scared.  But we don't know what else to try.   Eventually, after an hour (or so it seemed) of crying last night, I went back up stairs, rocked her back to sleep, tiptoed out of her room, and she slept the whole night.  Tonight I decided to try going to sleep with her in her bed (yes, we were both in the toddler bed together again).  After about a half hour and deciding she was sound asleep, I crawled as gracefully as I could out of her bed, walked out of her room and downstairs.  There was no sound.  But within ten minutes she was awake again and Tom is up there once again trying to get her back to sleep.

I know I've said this before, but we're out of ideas! Anybody? Anything???