Creating a Vision

Some parents want to retain their child because they think that it will “fix” them…

Often, parents who want to hold their child back do so, so that he/she can be the star of the class…

I hope you felt heard, because when parents don’t feel heard, they become militant and make trouble for us…

These words were actually spoken out loud.  To me.

Yes, that’s me you hear, laughing hysterically all the way from Montana.  That’s how funny this is to me.

Maybe the person who uttered those things (the first during the IEP, the second during a conversation at pickup the next day) forgot that I purposefully adopted a child with Down Syndrome.

And I didn’t do it with the intention of “fixing” him.

As if he needs to be fixed.

10917413_810496832140_6341374727576169602_n

Adorbs.

 

The kicker is that I didn’t even make a case for retaining Paul, but only mentioned it when inquiring about their thoughts on his future placements.

After trying to explain several times that if I did want to discuss it more seriously, it would be in an effort to provide Paul with more time to gain foundational skills so that his education can be more fruitful.  What good is it for him to be with a peer group when he all he does is parallel play, with limited interactions with his classmates?  How will he learn how to manipulate small toys, tools or utensils when he is only interested in balls and bubbles?  What chance does he have to learn much of anything when at the first instance of frustration, he acts impulsively and can’t cope?

I still believe I wasn’t understood at the end of the conversation.  I honestly don’t care though. It was very clear that one of two things was happening (or perhaps both; I suppose it could be both):

1.  This person has some extreme experiences or background that is tainting her view of all parents and she is projecting it on me.

2.  She was, perhaps, trying to train me to not speak up much in future meetings to make her life easier.

But, whateves.  Like I said, I’m laughing over here.

It has caused me to think about my expectations, and that’s a good thing.  I’ve thought about them before- for me, so many of my hopes for Paul have already been realized.

He is in a family.  He is loved.  He, in turn, loves.  He knows of God and he prays with us and receives grace.  He receives medical and therapeutic care and is healthy.  He smiles, laughs, kisses and enjoys other people.  He delights in simple things (such a beautiful way to live.)

What a life he has!

But we’re entering into the school world and I guess I just don’t know what my vision is for his education.  I want to have a balance between being realistic and being optimistic.

I know he is behind; I know that even if he was retained at some point, he’d still be behind.  He is the lowest functioning child in his special needs class.  I can see a difference between him and other children his age (or younger) with Down Syndrome.  I expect him to be under our care in some way, shape or form for the rest of our lives.

But does that mean he won’t ever learn to read, even basic words, or just learn sight words?  Will he be able to write at all?  Maybe his own name?  I don’t want to just roll over and let him become more and more behind his peers, because I don’t know and can’t trust what all the “experts” think of and expect from Paul.

Even though my most deeply held and fundamental hopes for Paul and his future are being realized everyday, issues of his schooling and education are also important.  And they aren’t my wheelhouse.  I need to educate myself and create a vision for Paul that is realistic, but also reaching.  Paul has already overcome so much in his short life.  A fear of mine is that people will put him into a box and limit what we can expect for him.  I’m afraid I could be one of those people.  It wouldn’t be the mark of a good advocate.

So that is my task-create a vision.  It won’t be set in stone; it can be fluid over the years, continually being adjusted the more we watch Paul grow up.  Before I even realize it, it’ll be Spring 2016 and we’ll be talking about Kindergarten, which from my viewpoint right now seems like the “big leagues.”

So, wish me luck!  And as always, suggestions welcome!

 

 

The IEP

Why am I googling “How to survive an IEP?” the day AFTER I had an IEP meeting?

Boy, that makes it sound dreadful. But it really wasn’t!  Overall, it was a very good meeting.  Paul (and our family) has been blessed with a caring team of professionals.  They have a positive outlook on Paul and are quick to notice the ways he has improved and gained skills.  Of course, we also can look candidly at the areas where he needs continued work.  As the parent who is obviously the most invested, emotionally and otherwise, in the child, there can erupt moments of sadness or grief during these discussions.  Thankfully, I really only had one eruption, but I didn’t cover the room with ash, so it wasn’t too bad.

I took a little time early yesterday to prepare- brainstorming a slew of different goals that I could have for Paul, but highlighting only a couple in varying categories (fine motor, gross motor, social/behavioral, communication) that I thought were most important.  It felt good when so many of our goals and ideas overlapped.  And every once in a while I could add a suggestion or two, so I actually felt like a knowledgeable and contributing member of the team.

So, we walked away with great goals for Paul.  Several that I had set in my mind to work on this Summer.  Though, it’s sort of laughable- I am not sure what I will accomplish this Summer considering the discomforts of the third trimester and having a new baby showing up.  But we can be optimistic.

I was surprised to learn at the end of the meeting that the one concern I did bring up isn’t technically part of Paul’s IEP, and that is the particular time and class placement.  The preschool constitutes children that are 3-5 years old.  There are 4 classes- two in the morning and two in the afternoon. It seemed to me that the class time and age group (though the ages can be mixed, so perhaps we should call it more of a “peer group”) could have an impact on the effectiveness of the education offered to a student.  However, it’s not included in the IEP, and therefore, I’m not clear on what role or weight my voice carries in the decision.  Though, to be honest, I’m really not clear on what weight my opinion carries in the IEP either.  Still, at least I know I belong in that decision making; class placement might be another story.

Here’s where I’ll go into some of the details.  This is really more for my own benefit since the meeting is fresh in my mind, but if anyone has any input I happily accept it.  Feel free to not read on, because it might be cumbersome.

Still, we had a good discussion about it.  Up until the day before the IEP, it was looking like Paul would stay in the morning class.  His preschool teacher knew this was our preference since Paul still naps in the afternoon from 1-4.  She mentioned she was about 90% sure he would stay in the morning which is where the younger kids generally begin, and said that he would be sort of like the “big boy” in class, but at the same time, it looked like his skills would blend well with the incoming kids (Paul is definitely the lowest functioning child in his current class, all of whom are moving on to the afternoon, with one even moving on to typical preschool.)

But then that changed the day before yesterday.  His teacher apologized and said that she spoke to the director and was told that because Paul will head to Kindergarten the year after next, he needed to move to the afternoon.  I was very glad she told me this the day before our meeting because I got to think though how I’d get to approach the topic.

Realizing that there could be reasons for moving him to the afternoon kids (other than being on track for K the following year) I wanted to ask at the meeting about why that decision was made.  I was simply told it was for the sake of social modeling and to prevent reversion.

I expressed some concern that since Paul still takes a significant daily nap that he might not be the best learner during the afternoon session.  A tired Paul is not cooperative, alert, attentive or particularly happy.  I want to be sure the time of his class is conducive to learning, because he has a lot to learn and it takes a great deal of effort and time for him to acquire skills.

There were some ideas to the contrary:

On the topic of reversion: I wish Paul was attuned enough to his peers to notice, and mimic their behaviors, good or bad.  Unfortunately, he doesn’t do any of this, so reversion or picking up negative behaviors (think hand flapping, or something) isn’t really a concern with Paul.

“It’s good to get him adjusted to a new schedule because in Kindergarten, he will have school for twice as long.”   Well, he doesn’t need a year to adjust, and there’s a big difference between just turned 4 and just turned 5; he likely would drop the nap by the time kindergarten started anyways.

“If he’s in a younger class, it’s sort of like ‘the squeaky wheel gets the grease.’  Paul may get less assistance if other, younger, children are demanding time from the aids.”  That’s true, but at the same time we are really only guaranteed the services that are outlined in the IEP, so I want to be sure he is in his most cooperative and receptive state for those.  (I’ll admit this reason is somewhat compelling though, because the reality is that Paul gets a lot of assistance from aids. Even though there’s no guarantee that support will be there for him in such abundance, it has been, and he’s benefited.)

And then somehow the director who was sitting next to me must have read my notes on my computer where I wanted to bring up various possibilities of Paul’s future placements, asking about a third year of preschool or 2 yrs of Kindergarten, so she brought up that subject for me.

Insert eye roll here.

It’s important to think about when he is older because he will only receive services until he is 18, so he may miss out during his last year of high school.”  Yes, it’s prudent to think about that.  At the same time, if Paul is best suited now to repeat one of his early years, I don’t want the *possibility* of him missing out 15 years later to dictate the decision.  A lot can change in 15 years and Montana has already come close to passing legislation to extend that upper age limit, plus, they can (and maybe do?) receive federal funds through IDEA up until students are 21.

In the end, the only compelling reason was this: that some of Paul’s more primary goals for the year involve social modeling from his peers and the younger morning class next year is shaping up to be more “low functioning” with severe autism, so they may be unable to provide the social interaction with Paul that he would need to make progress.

So it was left open ended, that we’d think about it. Paul’s preschool teacher and I are probably the only ones on the team actually thinking about it (I had a great conversation with her the next morning), but such is life.  I will review his goals this weekend, but I anticipate that it will be ok to start him in the afternoon.   Still, we are banking this entire plan on the flexibility and adaptability of a 4 yr old.  

Paul is purposefully frustrated by us every day, at every meal and playtime, to help him learn new things.  It really shouldn’t fall on him to accommodate a team of adults.  There are benefits that make it worth it to give this a try, but if he can’t adjust or is just miserable, we’ll need to step in to take the burden off of him.

I would love some sort of plan set up to ensure that, if the afternoon just doesn’t work for him after a 6-8 week trial, we have greased the wheels to move him to the morning to ensure he can learn more effectively.

Does anyone know of a way I could accomplish such a “plan”?  I’m not clear on what a “parent IEP attachment” is (if you know, teach me!), but no matter what it is, I don’t think it applies here because technically AM/PM isn’t part of his IEP.  Any idea of something we can put into writing? I am not looking for something legally binding or particularly formal, just something that I can submit to have on record, and that can be in some way acknowledged by his team.

 

7QT- Is this nesting?

Yesterday I had about as productive of a day as I possibly could in my current “7 months pregnant with two almost 4 yr olds” state.  Let’s do some quick takes about it.

1. Kids were not only fed all their meals, they were also on time to both preschools.

2. While they were gone in the morning, I took to stashing some less popular toys in the (locking) cabinet and vacuumed the floors.

3. During naps, I cleaned out some shelves in the kitchen and went through the pantry to make a donation bag for Goodwill and organize all the stuff on the floor.  (Note: our pantry not only houses food, but also cleaning supplies and a bin of seasonal decorations, along with a host of other random things.)

4. I also went through a closet and did the same thing. (No, I’m not stretching these out at all.)

5. AND  I sorted through bags of clothes I plan to get rid of, separating them into a “ThredUp” bag and three “Goodwill” bags.  I haven’t been brave enough to do the whole capsule wardrobe thing, but getting rid of about four bags of clothing is a step in the right direction, I think.

6. In the evening I hung up three photo ledges on a bare bathroom wall and decorated them.  The decorating was so creative that it actually covered up a part of the wall that was not painted.

7.  And at the end of the day, I had 6 bottles of wine, 1 bottle of sparkling cider, and one teeny tiny bottle of single malt scotch sitting on my countertop, waiting to be taken by anyone who wants them.

I will point out just a few more things.

-Strangely, I was not exhausted last night.

-I do think I deserve a medal.

-I don’t think I’ll be quite as ambitious today.  Because this.

Though I do have to bake 2 pies this morning.

Speaking of pie, I have seen both raspberry and blueberry pie recipes calling for cinnamon.  Is that weird?  It seems weird to me.  Please comment about this because I need direction.

Happy Friday.

And you should know that the liquor on the counter still waits, so come get it!

AND there is a post on baby boy’s name- if you are some baby naming wizard (or not!) please read and tell me what to do.

Linky: http://thisaintthelyceum.org/sqt-i-did-more-than-i-thought-this-week/

What’s in a Name?

I guess I didn’t realize people thought we had a Papal theme going with our kids’ names.

I mean, sure, Benedict is pretty obvious.  He was born during Pope Benedict’s pontificate and before we were really into the BBC’s Sherlock, so this isn’t some ode to Benedict Cumberbatch.  PS If you haven’t seen that show, you are missing out.  It’s on netflix!

As for Paul, honestly Pope John Paul II didn’t really enter our thoughts.  We just liked the name and his little Ukrainian face just screamed “Paul” to us.  Like a little old man…
IMG_2761

And then, of course, our minds went to St. Paul the Evangelist.  I thought it was fun to have a child who was named after the founder of Western Monasticism, juxtaposed with another child named after the apostle who travelled among all the gentiles in the work of evangelization.

But I’m a nerd like that.

This next name is proving to be a challenge.  With each child, I seem to find that the names I liked before, aren’t the names I tend towards now.  The boy we were planning on adopting in Ukraine was going to be Joshua, but now I’m not so into that name.  Conversely, names I liked but was a bit hesitant about, I’m really into now.  Like Ben’s middle name, Xavier, for example.  In 2011, it seemed like it was a bit too much for a first name, but now, if I hadn’t already used it, I would jump on that for this kiddo.

Here’s a running list of names that I would be fine with.  None of them excite me too much, but they don’t disappoint:

Simon
Leo
James (no “Jim”, just James)
John (this is a bit much with a Benedict and a Paul though…)
Gabriel
Daniel (don’t love “Dan” or “Danny”)
Dominic
Andrew
Blaise
Adam
Sebastian
Samuel
Sean
Nathaniel (my brother’s name; does that make it weird?)
Titus (Paul’s companion in the Scriptures; that’s kind of cute, right?  But I think this name could be ripe for teasing…)
Maximillian (will have to figure out how to actually spell this one)
David (don’t love “Dave” though)
Ignatius “Nate”
Theodore

But so far the top choices after consulting with Ryan are

Michael
Nicholas
Alexander “Xander”

The search is still on.  I will probably start looking outside the Catholic name thing and just assume that if we end up with a more modern name it will mean he will just have to be the first saint of his kind.  That’ll probably happen, right??

7QT

1. Yesterday was a lovely day.  In the morning I went to a bagel shop with 2 other moms whose kids go to school with Paul.  I must admit, it’s nice to spend time with some moms who understand the blessings and the challenges of having a child with special needs.  Hoping to cultivate more of these friendships.

2.  Speaking of special needs- IEP’s!  Last year and this year’s IEP meetings were/are nothing for me to fret about, which is great because I’m not really that knowledgeable.  Next year will be…interesting.  I should start educating myself now.  Please, if you have any good info to share, please do!

3.  My in-laws are back in town!  They were in Florida for the Winter, but got back to Montana earlier this week.  The boys were so excited to see them (I think the feeling was mutual)!  I think we’ll give them a few more days to settle in at home before we drop the kids at their house and then flee to Cancun or something. ;)

4.  I am 29 weeks today.  A few times a week either Ryan or I (or both of us) express disbelief that we are actually going to have a baby soon.

5.  Give me your best boy names!  We generally like names that give a nod to our Catholic faith.

6.  Running low on thoughts.  One pic of Paul:10410954_830536502480_3421045435727625467_n

 

 

 

 

7. And one of Ben. 
11209608_831929081740_7108622993868272710_n

 

Linking at This Ain’t the Lyceum!

A brief PSA

People may say it’s because I’m “offended.”

I’m really not.

But I’ll be the first to say that many are.  Lots of people in the special needs community get terribly offended when they hear the word “retarded.”  They have their, likely justified, reasons.  I’m just not.  I’m still relatively new here, you know?

But I will give out this helpful public service announcement:

When you use the word “retarded” derogatorily (and honestly, with its connotation, it’s basically always derogatory), it just reflects poorly on you.

That’s it.

You don’t come off well.

You could, and likely are, a wonderful, hilarious, kind, loving person.  You probably love people who have special needs and don’t think negatively about them or ever make fun of them.  You’re great. But you’re using words and making jokes that most mature and self-reflecting people gave up before they went off to college or joined the adult world.  So, it’s really just for your own benefit that you stop.

It’s not for me.  It’s for you.

7QT

1.  What once was a dungeon like room with a couple different colors of dark blue paint across the walls (don’t ask) is now a pleasantly bright yet neutral green.  Ben’s room is complete!  At least the painting part anyways, and he has moved back in there, so we’re doing well over here.

2.  I out-stubborned Paul yesterday.  After a 48 hour liquid strike, because I refuse to give him a bottle, he drank from an adaptive cup.  He could do this all along, mind you.  He does it for his OT at preschool and his ST, too.  But he wouldn’t for me, little stinker.  But last night, he broke down and gave in.  It was a messy 10 minutes or so, but he drank about 12 oz of milk and juice.  One step closer to saying “bye bye bottle!”

3. Yesterday I was awakened by the sweetest sound- Ben chanting the Our Father over and over again in his room.  Shortly thereafter he was yelling “Mommy and Daddy, I have to go potty!”  But the first part was real sweet.

4. St Francis DeSales really has some gems.  How I wish I could be like this!  I’ll work on it.

peace

5. Paul loves hide and seek!  It is so funny!  He will always hide with Ryan when Ryan and Ben play.  And when he finds Ben, he always yells loudly, followed by a few “bah bah bah” which is his go to babble right now.  He seems to understand the concept of hide and seek better than Ben in some ways, since every time Ben hides, he yells out where he is.

6.  Belly baby is doing well.  He had a quiet day or two, which made me wish he would give me some good kicks like usual, and then he didn’t disappoint.  The following day he kicked me to no end.  He knew what I needed. I think I’m like 27 weeks or so?  I’m losing track.

7. So many beautiful new children listed on Reece’s Rainbow.  Check out the “newly listed” section, pray for them, donate, and heck, adopt one!  Since the RR site is being slow right now, you can also find a lot of them here, on our facilitation team’s site: http://www.handofhelpinadoption.org/search/label/Children