#MicroBlog Monday

This gem came home from school this week.



He was asked to write a story about his family, which he did. He wrote about his Homecoming Day celebration.

It's just a few sentences, a story telling about his day.

Still, my heart is full. :)

Stop by Mel's for more #Microblog Monday posts.

#Microblog Monday - Homecoming Day!

Today is Sh.awn's Homecoming Day! On this day 8 years ago, after 90 long days in the NICU, we finally got to bring Sh.awn home from the hospital!

I love celebrating this day because it is super special to me. One of my boys finally came home from the hospital after months of thinking that it would never happen. He was here, and I could hold him whenever I wanted. For as long as I wanted...

For the first time, I truly felt like a mom. It was glorious!

This day is special to our family, and we are going to keep on celebrating Homecoming Days until they decide they no longer want to. I'm hoping that will be forever. :)

Head on over to Mel's for more #Microblog Monday posts.

Sh.awn's Day

Yesterday was Sh.awn's Day. 7 years ago yesterday, Shawn came home from the NICU. He was 90 days old.

7 years ago yesterday, after spending so much time in the between--parents yet unable to be care takers--we actually had a child in our home.



I honestly didn't know what to do with myself, especially because I am not exactly sure I truly believed we'd ever get to take them home.

~~~

Yesterday we celebrated Sh.awn and his Homecoming.

He reveled in the chance to call all the shots for the day, eat cake, and open a present.

He loved the idea of a day all for himself, something that is extra nice when you are a twin.

And while it is important for me to give Sh.awn a day to feel special, we celebrate Sh.awn's Homecoming Day because I am so very thankful we have him in our lives.

Happy Homecoming Day, Sh.awn!

#Microblog Monday

Today the big boys go back to school after a three week vacation. It's been a nice break, but unfortunately, it's been long enough for us to get out of our routine. Yesterday at lunch we talked about finally getting the chance to go back.

J is nervous; his stomach hurt last night, a symptom of his worries. He was almost as nervous as he was before the start of school. Thankfully, he seems a little better this morning. Excitement has mixed with the nerves now.

~~~

Sh.awn was visibly upset yesterday while we talked about returning to school. He knows he'll be working with his new aide, and he struggled with the emotions of the new situation. For the first time, S's old aide, whom he LOVED, will not be there today.

"But why does she not want to be with me any more?" he asked. "Is it because I wasn't good?"

Oh man. Talk about ripping my heart in two.

Of course I explained again that this change had nothing to do with him. I even reminded him of his new aide and talked about how nice she is. He said he understood, but still.

My heart aches. My poor boy.

For him, this change is nothing less than a break-up, one in which he had no idea was coming until it happened. I'm sure it's hard for him to take it any other way than it was something he did when things like 'higher pay' means absolutely nothing to him.

All he cares about is that a person he loved left him.

He didn't say much about it when he woke up today. I didn't bring it up with him either. I know he knows, and I don't want to set the course of his day negatively because I upset him before it started. I simply kissed him on his cheek and wished him a good day like I usually do before I head out to work.

I hope that his day goes well. I hope that he is reminded how kind this new aide is. I hope he quickly learns to love this aide. It won't replace the loss he feels about his old aide leaving, but maybe it will help ease the sting.

Stop by Mel's for more #Microblog Monday posts.

#Microblog Monday - Snuggles

I'm lucky in that my boys love to snuggle. It is not unusual for one to crawl up on the couch next to me and wrap their arms around me.

I love it, and oh how I hope they never outgrow it.

There is something, though, about snuggling with Sh.awn. Holding him always, always makes me fall asleep. I don't know how to explain it, and it is something that doesn't happen with my other boys.

Of all my boys, he is the one about whom I worry most.

He challenges me (and my parenting) the most.

It could be argued that he also brings me the most frustration as a parent.

And yet, he is the one who calms me, who can bring me back into the moment, just like that.

When I snuggle him, all is right in the world...

Oh how I love this sweet boy.

~~~

Stop by Mel's for more #Microblog Monday posts.

The Boys Are 7!

The big boys turned 7 on Monday. It truly blows my mind. 

Ja.son

Sh.awn

They are so big and smart and funny and amazing--everything I was afraid to wish they'd be when they were tiny premature newborns. I am beyond proud of how far they've come. I know they'll accomplish great things in their future, too!

I am always taken aback by how much the drama behind their birth still affects me. The stab of emotion isn't as strong as it used to be, nor does it last long, but I'd be lying to say that it isn't still there. Even with all of the good that we have in our lives, there is still that small twinge of sadness about what might have been.

Bittersweet

Ja.son has slowly adjusted to life without his glasses. He struggled the first day. He asked for them once the second day. Today, he didn't ask for them at all.

Sh.awn, however, is still struggling with the change. He frequently reminds Ja.son to go get his glasses. He argues with Jay when Ja.son says he doesn't wear them anymore. I guess it makes sense; Sh.awn is the one who saw the glasses all the time. It must be so strange to see such a huge change in the familiar face.

As much as I hate those glasses, I must admit that this new milestone is a little bittersweet for me. The glasses were a visual link between the boys, a small sign that yes, they are more than brothers when there is so little else that implies they are twins.

Sure, they still have a few parallels to their lives. The CP is one. When they are both in their walkers, it's obvious the two of them are connected in some way. But really, that's the end of their similarities.

The boys have always been very different. Aside from the brief time during their very early days, they look different. One is tall and lean with a mass of coarse, thick hair. The other is more average in size with fine, straight hair. They have always been different in their strengths and interests. One likes numbers and math. One likes to read. Their differences go on and on, and for the most part we celebrate them as individuals.

The differences ended when you looked at their faces; the glasses and even their scripts were the same. They both had them, one of the few remaining things they still shared. To some extent, the glasses became a symbol of their twinness.

Each is his own person, yes, but they will always be twins.

I've always thought that being a twin is something interesting and unique. I hate that this feels like yet another way they've been cheated from the specialness of their birth.

I don't know. Maybe they could care less.

Maybe this is something that bothers me a whole hell of a lot more than it will ever bother them.

As much as I am happy that his eyes have done just what we wanted them to do when he first got his glasses on his first birthday, and even thought it may be silly, there is that part of me that is feeling melancholy nonetheless.

Day 7

My love affair with the boys' teacher continues. You guys, I am so, so grateful this woman is in their lives. Seriously.

She emails nightly. She send me pictures. She tells me my boys are amazing, even during the really difficult days.

She is awesome (and obviously brilliant because she likes my boys)!

~~~

I got a response to my letter to the district. The boss of the person I had been dealing with replied Tuesday morning. She apologized for not telling us that the person was hired and what the plan for training/transition would be. She ended by saying she was working on scheduling the meeting we asked for...

So, I guess that is good.

I was pretty clear in my intentions for the meeting: 1) we are looking to avoid a future situation of a long line of different aides working with our son (limit who his subs are), 2) we plan to push to include transition/overlap time between aides when changes must occur, and 3) we want to receive written notification when major changes to staffing will occur.

Seeing how well Sh.awn has done since the aide madness has ended has made me even more adamant that these things must be included in his IEP. Must. There can be no alternative.

He has had 6 full days now without a single issue at school. The teacher has raved about him every single day. She's said things like, "Today was Shawn's best day EVER!!! I don't even know where to start..." this week. The principal even called to say that she was amazed at the change in him, it has been that significant.

Not only that, he has been a changed kid at home, too. He has been the Sh.awn I know and love again!

To top it off, all this has happened and he is sick. You can tell by looking at him that he doesn't feel well. Still, he has been a rock star.

He went from a kid with a referral to the county behavior specialists to help manage his frustrations/outbursts, to a kid who has not raised his voice in 6 FUCKING days at school. He went from being so difficult at home that we were all miserable to being able to count on ONE hand how many times he has gotten into trouble at home in an ENTIRE week.

Oh, how my poor boy suffered. I will not allow that to happen to him again. Ever.

Having consistency and someone who understands his needs has made all the difference. (The new aide has been fully transitioned in. The old aide, D, is still there, but she is not directly working with Sh.awn at all at this point. She hasn't done much more than observe for the last two days, and she still has two more full weeks left in the class to "train" the new aide.)

I think I'm starting to breathe again, too.

Technically

It's interesting what happens when things are based on that word "technically."

Technically, I had eggs and milk for dinner. So what that those eggs and milk were part of a delicious cake and ended up with little to no nutritional value added to my diet?

We are now in another battle with the school district. Less than four days after we signed the IEP, the school district decided to pull the aide Sh.awn has had for the last several months, the one who has helped him overcome some pretty challenging physical and behavioral obstacles, and move her somewhere else. They did so without any warning on our part, and didn't even let Sh.awn or the teacher say goodbye to her.

Poof. Just like that, she was removed from his life forever.

The district is now saying this aide was always "temporary" for Sh.awn (news to us) and she is needed elsewhere. The district's solution is to give Sh.awn a temporary aide, one who does not know him at all, for "a few weeks" while a "permanent" aide who they "think will be a good fit" completes necessary paperwork and is hired. If the old aide was always considered "temporary," then why was no permanent replacement hired? It isn't like they didn't know that one would be needed. Why take the one he knows before a replacement has been found?

It has even been suggested that Sh.awn's teacher take time away from her entire class in order to train the current temporary aide. (Not her job at all, and frankly, as a teacher this upsets me on a whole other level.) I can only guess that she would have to do that yet again when the permanent aide has been hired.

How can that be fair to Sh.awn, especially when it is well known that he needs structure and routine in order to thrive in his academic setting, to force him to undergo transitioning through two new aides? How can that be fair to the teacher or the rest of the class?

This is going to be a huge setback for Sh.awn, who will feel it the most, and also for all of the students in his class. We have the unique perspective of seeing both sides of this issue. We see how it impacts Sh.awn when he does not have consistency. Behaviors that had been eradicated for the most part, have now returned and will likely continue for the foreseeable future without a consistent permanent aide to help him succeed. We also see how it impacts Ja.son, along with the other students in the class, when the teacher is called away from the class to help an aide learn how to help Sh.awn. Ja.son's education will be disrupted as well.

It is behavior like this that gives schools and school districts a bad name.

Technically, the district has provided an aide. Technically, that is all that is required of them.

Technically, this is all just shitty.

The adults responsible for moves like this should be ashamed of themselves.

Sigh.

When We Do Things, We Go All Out

So how many people do you need at a kindergarten IEP meeting times two? Let's see...

1) Kinder teacher (for S and J)
2) principal (for S)
3) vice principal (for S and J)
4) psych (for S and J)
5) OT (for S and J)
6) PT (I have dubbed her Bitch 2. Ahem. for S and J)
7) Speech (for S)
8) Vision specialist (ended up being worthless - for S)
9) Resource Teacher (who will take over as case manager - for S and J)
10) Behavior Specialist (for S)
11) Behavior specialist's administrator (to write the behavior goal - which he's already met, but we're leaving for the year just in case - for S)
12) nurse (Behold Bitch 1. Double Ahem - for S and J)
13) district special ed coordinator (for S and J)
14) OI specialist (from district level - for S and J)
15) some other lady who I can't even remember and I'm too tired to go look - she was district level, though. Not sure how. The district was totally out of compliance in a big way, so she was making sure they stayed in compliance now. (for S and J)
16) my husband
17) me

It was INSANE.

INSANE.

Total meeting time for both was 3.5 hours. Sh.awn's was at least 2.5 hours. Maybe more. Ja.son's was under an hour, I know for sure.

I tell you, when we do things, we go all out. There's no half-assing it around these parts, no sir.

Sigh.

There was so much info, and while I'd say overall it was okay I guess, there were some things that are bugging me and I'll need to address. Some of the assessments were done when Sh.awn was struggling so much and are basically invalid (and wrong in some cases) in my opinion. I still have to figure out how I want to handle that.

 

I think they are well intentioned for the most part. The principal redeemed herself somewhat. They are going to make actual modifications to the kinder room (new faucet and adaptor for the toilet) to allow Ja.son to be completely independent. Two, the nurse and PT, did piss me off, however, so they are in my watch list. I asked Is.aac if he got the same vibe from them, and he agreed that they were just plain bitchy. I may have got a bit sarcastic and said that perhaps his father and I have a better understanding of our own child than they did and to back the fuck off. You know, minus the fuck part because I know how to be civil.

 

The thing that upsets me most is that he was assessed at the start of the school year when he was having all kinds of behavior issues. That reflected in him not cooperating in some of the big testing (IQ for one). Sigh. He is a different kid in school now, so they'd get a totally different picture of what he is capable of doing if they did the testing now. In fact, they had to rewrite just about every goal they came prepared to offer because he'd already reached them or was just about to all on his own just since school started. (which...um, underestimate my boy much?)
 

We didn't sign anything yet. (They practically crapped their pants when I told them we'd not sign and were taking it home to discuss in private. lol) We'll get our copies tomorrow (they had computer issues and the program kept freezing). Is.aac and I will take the weekend to talk it out with each other and see if there is anything we'd like to tweak.

Sigh.

I'm exhausted. My brain has been fried.

 

Oh, I am not proofing this, so forgive whatever errors you see.

IEP Tomorrow

Our IEP meeting is tomorrow.

I'm overthinking it, I know, but duuuuudddeee. No one wants to go into a meeting to hear about her children's shortcomings. It just plain sucks.

I want to go in there and be pleasantly surprised about how supportive everyone is. I want to hear how they think my kids are awesome and how they can't wait to get started helping them achieve and thrive at school.

I suspect that it won't go that way. I'm 85% certain that I'll have to fight. I'm not feeling like I am at the top of my game so having a fight ahead of me is just overwhelming.

I'll just have to see how it all plays out.

I hate not knowing. Sigh.

Is.aac and I have talked; the plan is set. We'll go in with me being bad cop, and him as good cop. (He's the one who will have more contact with them with drop off, etc.) We have a signal to let the other know our thoughts without saying.

Sometimes I wish I drank alcohol. This would be one of those times when I could use it.

They're SIX!

Today my boys turn six years old. It's unbelievable, really. It seems like just yesterday they were born.

~~~

Goodbye to FIVE, the year of:

• Starting school
• the never ending Sick
• 5 lost teeth and visits from the Tooth Fairy
• playing in the mud, dirt, and sand
• swimming therapy
• learning to read and write
• crafts
• trips to Disney, Sea World, hotels, and the zoo
• big boy beds
• finally putting those pull-ups behind us
• disabled parking placards
• hugs and kisses,
• and so much more!

Five, oh five...this has been a magical year.

 

 

Happy Birthday, Shawn and Jason!

I can't wait to see what year six has in store for you ... and us!

Could It Be?

He finished the week with glowing reports every single day. I am wildly proud of him. He has tried so HARD every day and is giving school all he's got. They're finally seeing it.

Dare I hope?

It has been a long six weeks, you guys.

I'm relieved and anxious and happy and afraid all rolled into one. What if this is only a temporary thing? We are not to the point that I can let down my guard, but maybe I'll get to that point soon.

Hopefully?

This weekend we are going to focus on celebrating the successful week. Sh.awn, and the rest of us for that matter, has earned it.

 

SO Hard to Be This Helpless

I can not tell you how incredibly hard it is to know so solidly in your heart that your child is smart and amazing while watching people at his school scramble.

To know what they are likely thinking.

To feel so helpless to do anything about it except continue to fight until they see what I see...what I know.

He is capable. He just isn't showing them he can do it at school. I can't blame him. It's easier not to, right? Plus he's always been so astute at reading people. He knows when people don't expect much from him.

I am not exaggerating when I say every adult in the school knows about my boy. I don't fool myself into believing that is because he's so damn cute.

The boys' teacher emails me updates every day. We've been going back and forth with ideas on how to best help Sh.awn figure out this new world of school for weeks now.

That's translated to the teacher (and aide #4) tweaking things daily, trying to see what works and what doesn't.

We had a break through on Monday, his teacher and I. She put it into action on Tuesday.

That has brought two amazing days in a row for Sh.awn. He's done more work in school in the last two days than he's done the entire school year thus far.

Now they finally see what I've been telling them all along.

Dare I hope that we have turned the corner?

Oh please let it be so.

Makes Me Sick to My Stomach

More school woes.

Our transition to kinder this year has been far from smooth, and frankly, this just takes the cake for completely inappropriate behavior. I am insanely angry about something that was said to my mom by the principal one day during pick-up this week.

Sh.awn is having a hard time in kinder. He's been acting out and overwhelmed with what is happening at school. To be fair to him, he's had 4 aides over the last 12 days* (two days of which he missed because he was sick). Adding that to the whole new situation of school, and it is no wonder he is struggling.

Anyway, during pick-up, the principal walked over to my mom and told her that she had a former student who looks just like Sh.awn. She wanted to show my mom the boy's picture. My mom was trying to get my boys in a fairly chaotic hallway and sort of mumbled a reply. The principal left and came back with a picture of a boy who was maybe 10 or 11 years old who had Down's Syndrome. The principal then went on and on about how much the two looked alike. My mom felt the only resemblance the two had was maybe their dark hair.

The only conclusion I can come up with as a reason she would show my mom such a picture is if the principal feels Sh.awn is mentally disabled. While we may find learning disabilities, he is by no means mentally disabled. I am majorly upset and highly insulted that this principal would say something like this.

I wrote her a letter because I think it is important that I let her know that this was by no means okay. Plus, I wanted documentation that the event occurred. It was hard, but I even think I succeeded in taking out most of the anger.

But still. Seriously? Why would anyone think something like that was okay to say or do?

Sigh. I just don't know what I am going to do about our school situation. It is bad and just doesn't seem to be getting better. The whole thing just makes me sick to my stomach.

*The school district had not hired an aide for Sh.awn until the first day of school. When school started, they had a temporary aide who was working with him and a few other kids at the same time for the first two or three days. The principal "helped" out with Sh.awn while that aide was with the other students. Then he was assigned a temporary full time aide. He was given a third aide who was ineffective. Now we have an aide who I assume will be here for the long haul. She's been with Shawn for three days. It has been a nightmare.

 

Yesterday

The idea of a chair has been floating around in the background for some time now, but I've always resisted taking that step. It isn't something that is absolutely necessary exactly, but it is something that might make him feel more independent while he is at school or out and about town. My fear, though, has always been that he'd get stuck in a chair and never get out. I worry that he might think rolling around is a whole heck of a lot easier that walking around, and he'd just give up on walking all together.

So when the idea of a wheelchair was brought up, I'd push it away. Let's get him as firmly established with walker as we can before school starts. Let's build his stamina so he can walk longer distances before tiring. (He can walk, but he tires easily.)

So yesterday, I felt a bit blindsided about testing the chair. "Hey, we have a chair here for a demonstration we're doing on Saturday. Why don't we just try Sh.awn in it today?" For the life of me, I couldn't think of a way to say no at that moment, because really, there was no reason to say no except that I'm uncomfortable with the whole idea.

But it isn't about me, it's about him.

My feelings really aren't what matters here. It's about him and his needs. I agreed to let him try it.

Seeing him yesterday, in the wheelchair, hit me harder than I expected. I was not prepared (again...ever?) for my reaction when I saw him in it. It took everything in my being not to burst into tears. My mind raced with "Oh shit, oh shit, oh shit," while I desperately tried to reel in my emotions.

It's about him, I reminded myself again.

After a deep breath, I allowed myself one text to Is.aac that included the picture I posted here and a frowny face. Then, I squashed the impulse to crumple into a weeping mess, put on my game face, and did my best to encourage him as he maneuvered around the room.

He could have cared less one way or the other. He was fine in the chair. He was fine in his walker. He was just plain fine. He acted as if the entire event was no big deal.

Because for him, it was no big deal. All he wanted was to get to the next toy in the room; he couldn't have cared less about how he got there.

I was am the one with the hang-ups. As much as I try to be upbeat and positive about everything when it comes to the boys, I sometimes fail miserably. Yesterday was one of those days.

I can't say that I am in love with the idea of getting him a wheelchair. I can't say if it will even come to be that he gets one.

All I know is we'll do what needs to be done for him because he is the only one that matters in this equation.

Mostly Wordless Wednesday

Still wrapping my mind around this. Man, it's hard.

More

It started off innocently enough. We had just started out on a thirty minute drive on our way to the boys' swimming therapy.

"Mommy, look! That man has canes!"

Sure enough, he did. He's a neighbor, who lives a few streets over from us. We've passed him many times before, but today it finally clicked in his head.

"Why does he have canes?"

I thought about it for a few seconds before I answered simply that it was because he used them to walk.

"Why?"

"I'm not sure why he needs the canes to help him walk, kiddo. I think it's pretty cool that he is walking with them, though. Don't you think?"

"Uh, yeah..." he said. Then he added, "Why do I need a walker to walk?"

There it was.* I don't know why I am always so unprepared for this type of question. It isn't like I shouldn't know they are coming my way. But to be honest, he has never really asked me why he doesn't walk. He doesn't see anything wrong with not walking without his walker, I do know that. For him this is normal even though he knows other kids do walk without walkers. (Hello, he has the constant reminder of Jack to help with that.)

Both boys know they have CP and have a vague sense of what that means. I've told them about being born premature (although Ja.son does NOT like talking about how he was sick and in the hospital for a long time. He wants to talk about his life once he was home) and their rough beginning.

Still neither has ever asked for more about the differences, namely their lack of walking.

The plan has always been to follow their lead on things. We'd wait to really talk about CP and its implications for their lives when they wanted more.

Today was a day for wanting more.

More they got.

I hope I did it justice.

~~~

*Why don't they ask these questions of their father?!

Weekend Leftovers

Today we celebrated Sh.awn's Homecoming Day. We made the day all about him and his choices. He LOVED it. Ja.son, however, wasn't nearly as enthused. His feelings could be summed up by this one picture:

He struggled with why they both didn't have a Homecoming Day today, even though he knows that he gets to have his day only nine sleeps from now. He told me repeatedly throughout the day that he wanted exactly what Sh.awn got, which brought up several pretty interesting discussions.

This is exactly why I love the idea of Homecoming Day. Yes, we celebrate because the day is the anniversary of when each came home from the hospital, but it is also a day to focus on each boy individually. That kind of thing is hard to come by when you have twins.

~~~

Thank you to Mel for highlighting two of my posts on the Friday Roundup! I'm so humbled and appreciative!

~~~

My cat is not well. We've had her for ten years, and she was somewhere around four-ish when we got her...

I am really worried about what this will mean. I have to call Monday morning to get her in to the vet.

~~~

My grandmother went back to her pulmonologist on Friday and was given the all clear. Finally. She has a little bit of scarring, but other than that she is healthy.

Her doctor was pretty surprised to see how good she look and even told her so. He gave grandma the impression that he didn't think she'd be alive for much longer when he saw her last August.

She's one tough cookie, my grandma.

~~~

It's tax time. Whoot! I love doing our taxes!

That's not strange or anything, is it? :)

~~~


Stop by Danifred's for more Leftovers.

Happy Homecoming Day, Sh.awn!

On this day five years ago, our little Sh.awn came home from the hospital! We were so excited to get the chance to finally be parents without the watchful eyes of the hospital personnel.

Picking him up without having to juggle wires was pure bliss. Sigh. I'm pretty sure all I did that first night was feed him at the expected three hour intervals and stare in wonder at him the rest of the night.

Happy Homecoming Day, Sh.awn!

It blows my mind to look at how tiny he was -- and he was
four times his birth weigh here!

Tomorrow, we get to celebrate! :-)

For those of you wanting to take a trip down memory lane, I wrote about his Homecoming here. (Try not to focus on the look of panic and disbelief we have on our faces in every single picture. I'm certain we both thought they were going to change their minds at any second and tell us he had to stay. lol)