So, so tired....

We are on day 5 of Dylan's medication change and it's been hard in a lot of ways.  

He's sooo tired.  Dr T. warned me that the would be but he's so sleepy.  He's okay mid-day but in the morning and evening, he struggles to just stay awake.

We've had a few REALLY major meltdowns that we hadn't seen since we started the Risperdal.  It broke my heart when he had the first one....all because his quesadilla fell apart.  It lasted 25 minutes.  Not good.

His temper has definitely been short.  Things that hadn't been an issue the last couple months have been setting him off.  His focus just seems off.

Fingers crossed that once we have this switch done, we'll get back to a better place.

I just love my boy!

Stomping my feet with my hands on my hips....

And saying, no yelling, 

"IT'S NOT FAIR!"

And quite frankly, I don't care if I sound like a 5 year old right now. 

(and I'm sure that my serious lack of sleep is playing a part of me just not caring what I sound like right now!)

Dylan has his appointment this morning with Dr. T. (child psych).  I went into it feeling really good and hopeful that MAYBE we wouldn't have to keep going monthly since things have been going so great.  The Risperidone that we started Dylan on a couple of months ago has been working GREAT and we've been so excited and very relieved to see the positive changes happening.  He's been handling situations with ease that before would have been a challenge.  He handled staying 4 nights with my parent while we are at Mayo Clinic with Kira and did fabulous.

The downfall of the medicine is that it makes me hungry......all.the.time.  I felt like we were doing a pretty good job of offering healthy options....lots of veggies.  We made a lot of changes and I was really feeling like we were handling it well.

Today we got there, he weighed Dylan and as we were talking he was looking at his growth curve and then it happened.....he moved his computer over by me and I knew what was coming or at least I thought I did.  I was NOT expecting to see a 10 pound weight gain in 2 months. (this is where I was working hard to keep the tears from falling because I KNEW what was coming).  Yep, we have to stop the Risperidone.  Dr. T. knew I was fighting tears and apologized but I knew where he was coming from and I agree that it's too much of a weight gain but IT'S NOT FAIR.

We talked about our options and agreed that we didn't want to wean off one medication before starting another because we know how D is with no meds at all. We have a plan that will hopefully work well.  

It's frustrating for me but even looking past how I am feeling, I want to do everything I can to make sure that Dylan continues to feel good about himself and all the great things that are happening with him right now.  I am hoping that he will breeze through this change with little problem.  I want him to continue to have all the successes that he has been.  Dr. T stressed that it could be tricky to find another med that will be AS effective as the Risperidone was but he's committed to do everything he can to make the best choices possible for D.

So that's where we are at.....I'm trying hard to not stomp my feet with my hands on my hips and yell "it's not fair" but it's hard today.  Really, really hard.........

I, Cori, vow to NEVER.....

Publicly discuss when Dylan has a  really, really good day because when I do, all holy heck breaks loose within hours.

WOW!  The last couple days have been rough.  Hoping it's just the change in schedules with school coming to an end, being outside a lot or something that he will adjust to soon because I'm close to losing it! :-)  Not really but it's rough on all of us when we have days with lots  of tantrums and hitting.

On an upside, his IEP is finally final.  The meeting was interesting and I had an advocate come with me.  It was extremely helpful to have her there.  In the end, the changes that we wanted made were made and most of the team agreed that they were reasonable changed.  We will meeting in November to look at his services and see if we can reduce anywhere.  I would love for him not need as many services once he's adjusted.  Time will tell.

FINALLY FINAL!

Dylan's IEP has been finalized!

FINALLY!

Today was a GREAT day!

Today was a GREAT day!  Yes, I felt like I needed to say that twice!!

I had Dylan's conference this morning and it was so reassuring to hear his teachers talk about the differences they have seen since we started his medication.  For me, I HATE to have my kids on any medication long-term even though medications have been a part of our kids lives for a long time.  But I am seeing the "good" more and more everyday.

At Dylan's conference today, his teachers showed me a video of Dylan dancing and playing rhythm sticks at circle time while listening to music on a CD.  I know for a lot of kids this wouldn't be a big deal but there are 3 things in that sentence that brought tears to my eyes.

1) Dancing

2) Playing rhythm sticks

3) Listening to music on a CD

All three of these things have been known to send Dylan running to his quiet area in the room....always taking time to calm himself down and sometimes, really struggling to re-enter group time.

He was doing it and I have gotten teary-eyed many times today as I thought about the video.

Tonight was martial arts.  Dylan loves martial arts and usually does pretty well while he's there.  There are nights that he struggles but for the most part, he does really well.  The past few weeks the kids in his class has been goofing off, not paying attention, etc but for the most part, Dylan has handled it well and not gotten to involved in all of that.  He's not perfect but he REALLY likes martial arts. ;-)  

The kids tonight were really out of control and my heart swelled as I watched Dylan doing EXACTLY what he was supposed to be doing and encouraging the others to do the same.  They were supposed to be running in place while waiting in line...the other 7 kids were rolling around on the floor, brothers were punching each other, etc. (and for the record, their instructor did know what was going on but was watching to see IF they would pick up on his instructions of what they were supposed to be doing....he's great!).....Dylan was jogging in place and said, "Hey guys!  We're all supposed to be running in place."  The instructor noticed and pointed out that D was being a great leader.  Dylan's behavior was pointed out several times during class and he was BEAMING!  He was SO proud of himself.  

And this Mommy was pretty darn proud too! :-)

"The" meeting....and our weekend.

Yesterday I had "the" meeting with the school district about Dylan's IEP.  I was very relieved that I had a parent advocate with me from WI Facets.  I couldn't believe how nervous I was going into this meeting.

We weren't asking for major changes to his IEP.  We were not comfortable with the way that parts of the IEP were written.  At his meeting on April 20th, the team determined that Dylan have an aide available 33.5 hours a week (which is basically "Bell to Bell") was appropriate.  When who ever looks over the IEP's downtown wasn't willing to approve that, we talked about them leaving the IEP as it was but adding in that there would be a review of services at the end of the 1st quarter (November).  We were perfectly fine with all of that.

What we weren't feeling good about was the fact that it was written in the IEP that on November 8th (1st day of the 2nd quarter), Dylan's aide services were to be cut in half.  We never agreed to that.

As the meeting go started yesterday, I made it clear that we had no issues with meeting to review his services in November but we needed come up with a better way to write the parts about after the 1st quarter. We also wanted something added that would make it clear that we would review all 3 areas of aide service: in the classroom, in specials and transitions/recess.  There is also the possibility that not all areas will have the same amount of service after the 1st quarter......we wanted it to be clear that just because we could determine that there is one area that we decide to change services in but others need to stay the same.  It was a lengthy discussion and I felt like we went in some circles before everyone was on the same page.

I am not waiting to get the "final draft" of his IEP to look over before it's officially final.  I was not going to sign anything yesterday until 1) I can show it to Jason and 2) I can be sure that all the changes we talked about are made and 3) the advocate can also look it over.  I'm pretty sure the team wasn't real happy that I wouldn't sign yesterday but one thing is for sure, this whole "thing" with D's IEP has opened my eyes.  Kira's IEP's have always been fairly straight forward....his, not-so-much.

In other news... :-)

We were in Iowa over the weekend and went to a family picnic on Saturday.  I was absolutely SHOCKED at how well Dylan did.  He was interacting with people APPROPRIATELY and really enjoyed himself.  I have no doubt that his meds are really working and we are seeing some very positive results!  YEAH!

I know this is how it goes.....

But I cannot even put into words how frustrating I am finding things lately.

Just when I dare think that things are "evening out" and getting easier, we have a couple of days like we have had yesterday and today and it's a smack back to reality.

I really thought that things were getting easier with Dylan and we were seeing a more consistent, positive behavior pattern.  I know that this isn't a sprint.....it's more like a long distant journey with hills and valleys.  I get that but it's so frustrating.

Dylan has been very defiant the last couple of days and very in everyone's space and face.  It's been challenging at home and it's been challenging at home.  I feel very much at a loss right now as to what to do.

I feel like I am in a constant state of trying to figure out what triggers what behaviors and right now, I feel like that's looking for a needle in a haystack.

Don't get me wrong.....we have seen some great changes since starting the Risperdal with him and I am so very thankful for that.

Tomorrow is a new day.