Reflecting

As I sit here and think about the wide range of emotions I've had the last couple weeks, it's pretty crazy.

FRUSTRATION has been one big one.  I've literally spent hours on the phone with our insurance company, doctors offices, etc....then through in the emails to various people.  I have felt like I've been running in circles in some instances.  I really have.  In the end, somethings have worked out while others are still out there in limbo....if you know me, you know that I don't do great with limbo.  Not one of my favorite places to be. 

In my previous post I wrote about the frutrations I have experiencing trying to get in with a child psych...well, that one worked out.  We have an appointment with the person who was our first choice!  It's not until February 15 but after the envelope of paperwork I got today, it's probably a good thing that it's a ways off! :-)  Have I mentioned how much I HATE paperwork?

Right now I am also in the process of trying to figure out the next steps to get Dylan set up with an IEP.  Asperger's is NOT an automatic IEP...we still have to prove that he needs one.  I feel very strongly that he does.  Several other professionals also feel this way...now we just have to convince the school district of the same thing and honestly, that's not an easy thing to do at all!  I have contacted CESA for some help with this.  I honestly don't feel like I can do this on my own.  Dylan had evaluations done at the beginning of this school year and didn't qualify for services...well, he did but our team determined that the areas that qualified him weren't impacting his education or while he was at school.  I so regret not pushing harder during the meeting but honestly, i was feeling so overwhelmed at that time that I couldn't really  think straight. 

I have real concerns about him going into kindergarten without an IEP.......

That also brings to me to our work at figuring out which elementary school he'll be going to.  Our home school may not be an option because of one of the special education teachers there who Kira had for a year and I cannot even stand the thought of Dylan having this teacher in his day...and I cannot even think about having to deal with her.  We had such a negative experience with her a year ago that we've made the decision that if she is still there, Dylan will need to go to another school.  I'm goign to check one out that isn't far from us soon. I was supposed to go today but my sweet boy got sick at school so I had to go pick him up just at the time I was supposed to meeting with the principal.  I'm confident that we'll find a good match for him.  Fingers are crossed tightly that this teacher will just retire....that would be good for any child that has to come into contact with her.

So that's where I am today.........

Brick walls....

I feel like I am spending a lot of time running into brick walls lately and it's getting extremely frustrating.

Dr I. asked that we take Dylan to see a child psychologist just to get confirmation of Aspergers as well as to make sure that there are no other issues that we should address.  After finding out on Friday that we didn't get an appointment at the clinic we were hoping for....there are so many kids waiting to be seen that they only offer a certain amount of people who go through the intake process appointments and D wasn't one of them.  This fact alone stirs up more than one emotion for me. It's sad to me that there are so many kids who need these appointments....so many families struggling.  While it's frustrating that we weren't able to get an appointment, it make me realize that there are kids out there (and yes, I really did alread know this) whose needs are far "worse" than my Dylans.

That doesn't mean that I'm not feeling extremely frustrated that we still don't have an appointment set up anywhere for Dylan.  We need to get him seen and after much checking this weekend, we have 7 doctors that our insurance will let us pick from.....5 of whom are at the clinic that we didn't get an appointment at and the other 2 are a considerable distance away.  I have a feeling that in the end, we will need to take an appointment wherever we can get one and HOPE that it's not a regular appointment that we have to travel for.

The fact that we have been so fortunate to NOT have to travel, other than to Mayo, for any of Kira's appointment over the lat 8 years is not lost on me one bit.  I know many families who travel great distances and spend night away for appointments on a regular basis.....I get that.  It's just amazing to me that living where we do, this is an issue with our insurance.

In the end, it is what it is and we'll do what we need to do to get Dylan seen.  We are at a stand still with the school district until we have the Aspergers dx on paper.....and a this point, I just need that.  I need to be able to move forward with getting things set up and in place for him for next fall.  I realize it's several months away but I know the process and I know how long it can take.

I'll end with a big AHHHHHHHHHHHHHHHHHHHHHHH and move on with my day!

Just tell me what you need......

After our appointment with Dr Iyama, I called that day to get D's information through the intake information.  On Friday, I got a call tha he hadn't been given an appointment with the child psych we had hoped for because he didn't accept our insurance.  I thought that was weird becaue we have a plan where we can pretty much go anywhere but I called the insurance company to check again.  Sure enough, when the very helpful lady did her search, the clinic showed up as fine.  I ended up spending most of the afternoon going back and forth between the insurance company and the doctors office.  When I called the doctors office to make one last attempt to figure out what was going on, I got a very nice guy on the phone who quickly figured out that it wasn't that they don't take our insurance at all.....there was no insurance information in the computer at all for Dylan so it looked like he was uninsured!  Ugggg....please tell me why the other 3 or 4 people i had tolded to couldn't figure that out.  I was so frustrated that something like that hadn't been checked when I called the very first time.  So in the end, we had to go through the intake process again and are back to waiting to hear if D will get an appointment.

We went to a waterpark this weekend to celebrate Kira's birthday.  It's always hard to tell how Mr D will do in a setting like this.  He can be having a great time and then all it takes, sometimes, is one thing and he falls apart.  Well, he had a GREAT time.  It helped that it was a small waterpark and it really wasn't busy either.  He absolutely LOVED the big waterslide and I won't even try to guess how many times he walked up all the steps and came down with the biggest grin ever.  As I was thinking about it, I realized that the water slides are just the kind of sensory input that he craves...fast, rough and over and over and over again.  He could also jump and hang on Jason and I and we could handle it a lot better being in water.  It's no wonder he was in heaven.  My biggest concern with him and the fact he would just take off when he wanted to go to a different area so we had to keep a REALLY close eye on him.  It was a good weekend.

As I've been thinking about Aspergers and how its impacting Dylan over the last week, I've had a lot of different emotions.  I've felt very frustrated that we didn't get the help we needed from the school district after we had him evaluated.......I just feel like they didn't listen. 

 I'm angry that because of ONE PERSON, we are having to look at a different elementary school for next year for Dylan.  At the risk of sounding like a 5 year old, it's just not fair. It's just not fair that this one person is allowed to continue to be in the lives of children, let alone kids who have special needs.  But in the end, I am going to do what is best for Dylan and if that means that he has to be at a different school for a few years, we'll figure it out.

And even though it's a relief to know "what" is going on, it makes me sad.  It makes me sad to know that it's not something D will outgrow.  It's not going to go away.  It's going to be a lifetime "battle" that he will have to fight.....we will have to fight with and for him.  You can be damn sure that we will fight and we will figure out how to best help him when the challenging times come.  Damn sure.

A few days have past......

And I've officially hit my "look for all the info I can and try to come with a bunch of new ideas to try" mode.  It's not a bad place to be but am a little on info overload so I took a little break.  I have a few books on my Kindle and am taking notes/jotting down ideas as I go.  Once I get a few, then I'll start figuring out which ones to try first.

I've REALLY been working hard on keeping my temper/yelling in check.  Looking back, I'm embarrassed when I think about how much yelling was going on.  It's been hard at times and I can easily describe myself as feeling like a pressurer cooker at times........but it's getting better and I catch myself really quickly now.

Tonight was a rough night.  Kira was off and her "mood" was setting Dylan off.  It absolutely breaks my heart to see Dylan take of running with his hands over his ears when Kira or Eva start crying.  I am glad that he has started heading to the basement to his rocking chair instead of hitting stuff....most of the time anyway.  Rocking is definitely something that calms my Dylan.  We used to joke about how much he rocked but it all makes sense now.

It doesn't change a thing but it changes everything.......

I'm going to be honest. 

I REALLY don't know where this post is headed...actually I don't know where this blog is headed.  If you're reading this, obviously I decided it was going to be a blog for others to read.  So bare with me as I work through many different emotions and feelings that are running through my head right now.

I've known in my heart for quite awhile that something just wasn't "right" with Dylan.  I've had a lot of people tell me that he was just a "spirited" child.  I've had a lot of people tell me that he was just a stubborn kid.  But I knew.  I'm his mom and I knew that something wasn't right.

On Friday, January 6......I finally knew that I wasn't crazy.  I finally knew that I wasn't a mom who just didn't know how to parent her child.

Dylan has Aspergers.

It changes everything and it changes nothing.

Dylan is the same as he was when we walked into the doctor appointment.  He's still my sweet Dilly Boy who loves to snuggle in the recliner with me and watch videos from when he was a baby.  He's still my boy who loves cars, monster trucks and race tracks.  He's still the boy who can make me laugh one minute and make me want to pull my hair out the next minute.  He's my Dilly Boy.

As I watched him interact with Dr. I, I got teary-eyed more than once and I had to bite my lip to not say a word more than once.  I wanted to say, "Stop talking and listen Dylan.  Stop talking."  I wanted to say, "It's okay to pretend that the dinosaur is a puppy.  It's okay."  But I wanted answers more so I let him be him.  It sucked to watch...it really did.

We are waiting now to hear about an upcoming appointment with the child psych to have him spend some time wiht Dylan to be sure that every possibility is covered.  Dr I wanted him to look at the "emotional" part of things to make sure that nothing is missed.  I love that about Dr I...she doesn't rush and wants to make sure that every possibility is looked at.

So we wait.....but changes are happening.

Hearing Dylan talk to her was an eye-opener to me about how I am parenting him.  TOO MUCH YELLING.  Yes, it's my frustration coming out but it's not working. It's not working for me.  It's not working for him.  It's not working for our family.  It needs to change.  It's hard.  It really hard.

I haven't been sleeping well the last couple of nights.  I close my eyes and it's like watching the last few years in slow motion.  It's seeing the times I yelled at him and knowing that he wasn't being naughty....he wasn't processing that what he was doing was "wrong" or bothering someone.  It's seeing the times I put him in time-out for situations that he likely wan't able to process what was going on.  It's seeing the times that I walked into a noisy, stimulating situation and got so frustrated with him because he "just couldn't behave."  It's seeing times that he ran away with his hands over his ears and I got frustrated.  It brings tears to my eyes and makes me feel like a terrible mom. (My head knows I'm not a terrible mom but my heart...well, that's a different story right now.)

I'm looking to the future with uncertainity and hope....weird combination I know but that's where I am right now.  I have a feeling this is going to be a wild ride!