Ben Quotes

While drawing:

Ben: See what I drew?  It’s a self-driving helicopter.

Ben: See this guy?  See his eyes?
Meg: Yes.
Ben: His eyes are like that because he got up too early and he’s tired.  But this guy, he’s fine, because pirates are made for nighttime adventures.


Preface: We told Ben about self-driving cars, which he thought was pretty cool.  A couple weeks later, at a random moment in the car…

Ben: I’m really disappointed.
Meg: Why?  What’s wrong?
Ben: I’m never going to get to drive a car, because cars will drive themselves! *bursts into tears*


Sigh.  I <3 him.

A whole new world…

Paul’s been at his new school since January, and if you read my last post, you know that Aladdin’s “A Whole New World” has been the unofficial theme song of this transition.  Basically, my face has been like this since the switch:


I could be either one of them, though I relate a bit more to Aladdin’s goofy factor.

Wonder and awe.

It’s been great.

And starting this week, we’ve entered a new phase.  Paul has started (mostly) full day kindergarten!  He’s at school until 2pm on Monday and Friday, and 3pm on Tues, Wed and Thurs.

He only has one therapy appointment a week. ONE.  This hasn’t happened in 4 years.  4.5 really.  It used to be that we’d have about 4 therapy appointments each week, sometimes 5.  That was on top of preschool or half day kindergarten.  So now I’m all smitten looking at my google calendar, like the way Aladdin was when he was looking at…whoever that girl is.


I do miss Paul, but it helps that I know he loves school.  He giggled for no reason the entire way home yesterday.  And he makes such happy noises when he sees his teacher in the hallway.

I’m realizing that come Fall, both Ben and Paul will be in full day Kindergarten.  What will I do with myself?!  It’ll just be me and Xander all day from 8:30-3.  That’s 6.5 hours, every day.  Oh the things I could do!  My imagination mainly focuses on vacuuming the car and getting a shower in before noon.

This Summer will be a special time.  I need to soak it in before we start 12 years of them being gone all day during the week.  Sigh. My big boys are actually becoming big boys.

A New School for Paul!

After a full semester of school- and all the good, bad and ugly that went along with it- we decided to request a transfer for Paul.  That’s a bit of a risky decision because technically, the district could force transfer him back to his original school since that is the one we are zoned for.  Our city has experienced so much growth- the schools are bursting at the seams, and while the official story is that they would do a lottery if they needed to force transfer a child, I really really don’t think they’d do that to Paul (or any other kid with an IEP.)  In the slight chance that they did, I’m pretty sure I could get Paul out of it, since the Director of Special Ed went through the ups and downs at Paul’s last school with us, has been incredibly supportive and got the transfer request approved within a few hours for us.

Paul started at his new school on Monday and it is like a whole new world! (I may or may not have been singing Aladdin’s “A Whole New World” in the car on my way to pick up today.)  Each day I am concerned I’ll hear something negative when I pick him up, but I haven’t.  It’s not that the other school was all negative all the time, but it sure felt like I heard a lot about what Paul couldn’t do, with an underscore of annoyance that he was in gen ed more than they wanted.  At his new school, they really believe in him.  He is in general ed a lot more, and I didn’t even request it- it’s what they proposed.

The general ed teacher has a very well rounded class.  She has time for kids to play, teaches social skills, and does lots of stations for academic work.  Stations are great for Paul because they are usually hands on and can be easily modified for him.  They are taking the initiative to modify what they need to and are arranging for classroom buddies to rotate in and do that work alongside Paul.  He gets to go to music class twice a week, and they are even having him join another kindergarten class for their library time since his day ends before his own class goes.  I find that I’m the one saying “It’s ok if you need to pull him out of her room during that time” only to be met with, “No, he’s doing great; he can do it.”  It is so refreshing!

Paul seems to enjoy it more too- it’s pretty early on, so I’m not sure if it’s just the novelty of something new, but Paul has been in a great mood all week. It can be easy to dismiss the feelings of a child with a disability, especially when that child is nonverbal, but Paul is smart and pretty perceptive.  I had been wondering if he’d tuned into any negative attitude or annoyance at his presence at the other school, particularly while he was in the general ed room.  He just seemed quick tempered when he’d come home, and easily frustrated.  But he’s very happy now, and I’m hopeful it will continue.

So that’s a Paul update.  He’s doing great.  I was a little nervous making this decision (Ryan was much more confident) but it was absolutely the right one to make!


An updated photo of Simeon!

Somehow, some way, someone got an updated photo of Simeon!

Here he is as a baby:


Here he is as a little bigger of a baby:


And now as a big 9 year old:



I know a lot of people would think that he doesn’t look very good in this photo, but he actually looks much better than I expected.  He’s not in a crib, he’s in actual clothes with no visible sores and doesn’t appear to be in pain, and while he’s leaning on something, perhaps for stability, his legs don’t look tight, though his hands do a bit.  I mean, he’s not in great shape and he needs a family badly, but I’ve seen children look much much worse for living in an institution for 9 years.

He is listed with an older sister.  We really don’t know much about her.  We also don’t know if they can be separated if someone was able to adopt just one of them.  We need a miracle for this boy and his sister.  We have prayed for so long- 6 years.  Multiple families (I think we are up to 3 or 4) have committed to adopting them, but it has always fallen through.  Please remember them in your prayers.


Prayers for friends


Please pray for college classmates of mine.  They welcomed a beautiful baby girl into the world last week.  Little Louisa has spina bifida, and they just learned that she also has a genetic condition that can cause serious issues for her in the future.  Please pray they have strength, comfort, and peace.



Happy Metcha Day Paul!

Real quick- we haven’t met again about the IEP, but I am in a very good place about it.  Sometimes just the reality of all of this – the things I don’t know, the few things I do know, the conflicting opinions, the forces outside of all our control – they just become overwhelming.  But I’ve got some great stuff put together, and more importantly, I know that the whole team means well.  Truly.  I just have to remember that there can just be other factors at play when it comes to schools.

But on to more important things…

We met Paul four years ago on October 4!  Here’s some photos from that day.


They put him in one of the only blue outfits they had and brought him in so meet us.  Ryan held him first, while I took notes on everything they were telling us about him.  I really wanted to hold him, but it’s important to get that information then, because you may never hear it again.  15 months and 15 lbs.  Fairly awake at first, but likely on sleep aids.  He never smiled, but he had the same sapphire blue eyes that sparkle now.

A few minutes after we first laid eyes on him they asked us what we were going to name him, wrote it down on some forms and our facilitator went off to file papers for court.

(It happens that fast.)

A lot has happened in 4 years- lots of medical care, therapies, preschool and now kindergarten.  He instantly gained, not only a mom and dad, but a brother about his age, and then a baby brother later on.

He helps me vacuum and is the only one in the family who puts his shoes where they belong.  He’s often requesting me to sing songs, shaking his head no until I get the one he wants (right now the hits are Panis Angelicus and O Beautiful for Spacious Skies.)  And he’s usually up for cuddles.  He’s just getting to be such a big boy; losing his baby face and acting more mature.  He’s a delight.

Paul has made me such a different mother than I thought I would ever be.  He makes me crazy one second, but melts my heart the next.  He’s taught me about what’s important in life.  About how to work hard, like he does.  He’s made me think and rethink all my parenting and discipline instincts.  I know more about medicine and special education that I ever thought I would.  I just think I approach the world differently now, and it’s a really good thing.  And I owe it all to Paul.




IEP- am I unreasonable?

I am far behind over here.  I still haven’t written about our summer birthdays or updated you on the house which was painted about a month ago.  And, well, this post isn’t going to move me forward with either of those things.

This post is more just…me just needing some support.

You may remember last year, during IEP season, we worked to get Paul in General Ed for some additional time.  It was set to be the first hour of the day, from 8:30-9:30, and then recess, snack, and the lunchtime recess.


Except for the first two weeks of school-there was some confusion and he was in general ed all morning except for 1/2 hour.   They even did push in services like OT, PT, ST.  It wasn’t really what we were going for.  I picked up on this and then chatted with the special ed teacher.  I only have a glimpse of how this got confused.  The minutes were messed up, but not the Gen Ed minutes, only the Special Ed minutes, so they must not have looked at all of it.  And they certainly didn’t read the notes where it clearly laid out when Paul would be where.  Twice.


But ok.  So we scheduled an IEP to amend the minutes.  I observed Paul a couple of times so I could see how he was doing, particularly in the Gen Ed room.  After observing, I wrote out a few behavioral suggestions, along with a list of probably 20 sensory or fine motor activities his aide could do with him to “break up” the desk work.  The half hour of more intensive work from 9-9:30, mostly at the desk, was behaviorally problematic.  Paul was clearly bored and frustrated- becoming vocal, not wanting to sit at the desk, not wanting to do writing (hand over hand, or otherwise).

Then we had the IEP.  It was supposed to just be about amending the minutes, but when I was told how everyone was going to be invited, I knew something was up!  Lo and behold, the Gen Ed teacher recommended moving him out of the room from 9-9:30 and instead have him back in later (around 11, maybe?) for a snack and read aloud time.

So his Gen Ed minutes would stay the same, just at different times.

And I’m not trying to be a pain in the ass.  Really.

But I’m having some problems, and I never sign anything at an IEP meeting, so nothing is set yet.

First- yeah, Paul will be an angel during snack and read aloud time, because there’s food.  I haven’t really gotten an answer, despite an e-mail and a phone conversation, about how much of that time is munching on crackers and how much is work.  But I don’t want him to only behave when there’s food.  I want him to behave, period.  And he has to be taught how to do that.  We lose our opportunity to modify his behavior if we only allow him in Gen Ed when he poses no challenges.

But even more than that, I really want to believe that we’ve worked reasonably hard for Paul to be successful before we change up his schedule.  And I’m just not convinced.  They’ve been providing him with alternate sensory/fine motor activities for 2 weeks.  And the only things they’ve actually tried were things provided by me, along with Paul’s private OT, and their OT (her ideas were along the same lines as what we gave.)

I’m not the educational professional here.  Where are all their ideas?  When a child with DS and/or ASD is bored and frustrated doing desk work, what do you do?  SHOW me that you’re doing your job.  If you haven’t tried anything else, then tell me what you’ve at least thought about trying and why you didn’t do it.

I’ve got more ideas.  A whole page of ideas, and in 4 different categories- support ideas, new sensory/motor ideas, ways to modify the work, and behavioral support for the staff.  So what are they thinking of?

And just 2 weeks.  To me, that is not long enough.  It takes 6-8 weeks to modify behavior.  I think that’s how long we should work at it, and if he hasn’t improved in that time, then we can explore our options.

I mean, honestly, am I unreasonable?  It pains me to call another IEP meeting.  I’m a considerate human being.  I understand how busy they are.  I don’t like taking up more of their time.  But really,  have we made a solid effort to help Paul be successful?  I don’t think so.

And this negative behavior?  It needs to be dealt with now.  Not later.  Now. Because the kid is strong, and it will get harder.  And he is clever and could just become more challenging.  And above all, he’s smart, and we should all get to see that.

So tell me your thoughts.  And if anyone could shed some light on the expectations of each of the teachers when Paul is in Gen ed, I would appreciate that.  I am just not clear on what the general ed teacher is supposed to be doing with Paul.  Does she modify work, or is it solely the special ed teacher?  I know you can write in the IEP consult between the teachers every week.  I think because Paul has an aide with him, he is just sort of floating along in there, with the aide taking care of everything, and the teacher just letting that happen.