The ball is rolling....

I got "the call" today from the special education teacher assigned to Dylan's evaluation.  Funny part is that it's the same teacher that Kira had for 2 years before she started kindergarten.  I really liked her....this definitely takes away the question of will I like the person taking all this information about my child?  I know I do.

I spent a good chunk of time tonight typing up a lot of information to share next week when we have the intake meeting.  I've been through enough of these meetings that to know that I get frazzled, nervous, whatever and I forget to mention things.  Not to mention I'll be having the meeting at our house with 2 kids home!  I need to be organized and feel ready to go.

I'm still waiting to get the report from the child psych.  I NEED to have this report to share at the intake meeting.  He dx'ed Dylan with ODD so I need this report.  He was also going to talk about why Dylan needs to have services in place.  I NEED this report.

Deep breath......

A superhero glove and a really cool pencil......

Writing is something that has been difficult for Dylan for a long time.  He has a tremor in his hand that not only frustrates him at times but just makes some fine motor skills more difficult.  I've been looking for quite awhile for any tips or tools that might help him.

A friend referred me to National Autism Resources for something completely different and I came across a Handiweight Glove .......and thought that maybe it would be something that could help.  I did quite a bit of research and found alot of feedback that it really made a difference for kids who had hand tremors.  It also provide propriocentive input and increases kinesthetic awareness both of which are things that we are working on with Dylan.  I wasn't sure how D would react to it so we called it a superhero glove and that worked! :-)  He hasn't been feeling great the last few days but he wanted to try it out this morning so off we went.

Kira used this pencil and grip for quite awhile when she was just starting to write and does now when her hand gets tired.  It allows them to now have to hold the pencil so tight.  Dylan decided he wanted to try it today...who was I to say no!!  He said that he liked it more than the other pencils.  I just wish the pencils were refillable but luckily they are pretty cheap.



I've thought long and hard...

I've thought long and hard about if I want to make this blog public or not. 

Keeping it private has nothing to do with being embarrassed or nervous about what people think.....it was a lot just for me.  Me needing time to process the information that we've been receiving and trying to wrap my mind around it all.  Me trying to figure out how to best help Dylan and how to make things work the best for him.  Me trying to figureout how to help Dylan.

I've decided to make this blog public for now.  That decision can change at any time. :-)

Reading blogs has been a way for me to find new ideas and really just feel comforted.  A for me to realize that all the emotions I've been feeling are normal.   And a way for me to feel hope on some days that have been rough on this Mommy's heart.

If even one person comes across this blog and I can help, I want to do that.  If I can encourage even one person, I want to do this.

So if you're reading this, thank you.  Leave a comment, I'd love to know that you were here!  Because this blog involves one of my kiddos, I have to approve comments before they are posted. (there's that mama bear again!) :-)

Like I said above, I think this is going to be a wild ride! :-)

Progress!

Yesterday I finally made some progress!  I got a call back from one of the many people I had left a message on Tuesday and it was actually the right person.  Relief!

What I found out was that yes, we do have to go through the whole evaluation process again.  I was pretty sure that was the case but a part of me was really hoping that maybe, just maybe there would be a way around it.  So the wheels are turning and this time it's not me running in a hamster wheel! :-)...not yet anyway.

I requested that Dylan be evaluated for qualify for services in 3 different areas: autism (duh!), OHI (other health impairment) and EBD (emotional behavioral disability).  I would prefer that he qualify under autism or OHI since he's pretty young to have the "label" of EBD already but because he's been dx'ed with Oppositional Defiant Disorder, the EBD is a reasonable thing to look into.

I am so thankful that I was able to connect with an advocate from WI Facets.  The advocate that I spoke with on the phone was extremely helpful and has left the door open for future communication as we begin this process again.

I have already started making my lists for the intake meeting that I hope will be helpful me to have written down as i get overwhelmed and emotional at these meetings and I hope that it will be helpful for the team evaluating Dylan to see exactly what we are concerned about, what some of Dylan's triggers are along with what has been helpful (or not helpful) when he's upset.  I'm also starting to make lists of what adaptations we are startng to use.

I am determined to go into this round of evaluations very prepared to advocate for Dylan like I never have before.

I'm just a hamster in a wheel.....

SERIOUSLY!  How on EARTH can it so hard to find out who you need to talk to??  I feel like I spent all day on the phone being told, "Oh you need to talk to......and here's their number."  Can someone PLEASE just give me the right number?

All I want is to talk to the person who can tell me if we have to go through a complete evaluation with Dylan again or if there is a way around it.  THAT IS ALL I WANT!

I'm pretty sure I know that answer and I'm not going to like it but give me the answer!

Today was a good day....

Today was a pretty darn good day.  We actually made it to church this morning and Dylan was excited to go to Sunday School.  The room that he is in has a rocking chair in it and according to his teacher, he spends a good part of the hour in it.  Today was no different but she said that he was actively participating in the the group conversation.....which made me really happy.  He was in a great mood when I picked him up too.

We headed out to lunch afterwards and he did well.  He was a little antsy and loud until the food got there but nothing that felt out-of-control.  

I think it helped a lot that we were able to get send the kiddos outside for awhile this afternoon.  They weren't out long but the fresh air did them all good.

Dylan was really snuggly today and really only had a couple of times that he really fell apart.

Tomorrow we're going to do some baking and he's REALLY excited about that! :-)

Today has been hard...

It's noon on Saturday and it's been a hard day.  Dylan has been extremely aggressive and unable to keep his hands to himself.  It's been hard for me as his mom but I know that it's been tough for him too.......in the book I've been reading 10 Things Every Child with Autism Wants You to Know they talked about "can't" and "won't" ....the 2 words are NOT interchangeable.  I need to go re-read that section in the book already.....even though I haven't gotten all the way through the book yet. :-/

Last night a bedtime was day two of the medication that we are trying with Dylan.  Dr. T stressed that it's not a medication that we will see an immediate change with.  He said that it's something that after a month or so, we should be able to look back and either say the things have improved with his temper/fuse or they really haven't.  He's on the lowest possible dose so we may have to tweak things a bit but for now it's a wait and see time.  Have I mentioned that I'm not always the most patient person in the world!

Even with the "hard" stuff right now there is good.  I LOVE how for the last 3 mornings, D has crawled into bed with me after he gets up for some snuggle time.  I will take the snuggles whenever and wherever I can get them.

Love my boy!

Something about hearing.....

"I'm going to go ahead and put this in medical records" makes everything feel real.

Don't get me wrong...I hadn't been doubting that D had Aspergers but knowing it's officially official brought up a lot of emotions that I really wasn't expecting.

Yesterday was Dylan's appointment with Dr. T, the child psych.  I really, really liked him and felt like he listened to what our concerns were and offered a lot of good help.  It's funny how I could tell exactly what he was doing as far as Dylan was concerned the minute we met him in the waiting room...the questions he asked him, etc.  I will say that Dylan didn't hold back...he showed the good, the bad, the ugly and the really, really ugly.  If we had been anywhere else, I likely would have been holding back tears and been incredibly embarrassed by his behavior but I was almost relieved...I wanted the doctor to see what we struggle with....not just hear me say it or read it in a report.

We were there for close to 2 hours.  It was a good mix observing, talking and interacting with Dylan.  Dr. T. had a resident with him who spent a lot of time interacting with D.......good thing because otherwise I would have had a really hard time talking with the doctor.

He agreed 110% with the dx of Aspergers but he also strongly felt that D has Oppositional Defiant Disorder.

We spent a good chunk of time talking about what supports we need to try to have in place for D before he starts kindergarten in the fall and thankfully, he is going to write a letter for me to share with the school district as we work to have services in place.  I fear that this may not be an easy task but I do know that I will fight for what I KNOW he needs to succeed.  Ready, set, go! :-)

Like so many things we've gone through with Kira, we can't go around this journey....we have to go right through it.  I know it's not going to be an easy one at times but we're going to take it one step at a time and put one step in front of the other.  It's not what  I would have picked, obviously and I know there will be times, as there have been already, where this Mommy's heart will break......but we'll figure it out.

I'm reading a book right now called Ten Things Every Child with Autism Wishes You Knew and it's been really eye-opening for me.  One line has really stuck in my head though.....

"........when your dreams break into a million pieces, you can either fall apart or get yourself a new dream."

I am not saying at all that I'm falling apart because of either diagnoises......maybe a little sad and yes, I've cried some tears but I'm not falling apart.  I am realizing, like I said before and like Dr. T said, it's going to be a long road and it's going to be a few steps forward and lots of steps back but we'll get there.......wherever "there" is.

All over the board......

I know it's been awhile since I posted....I can tell you that it means that my mind has been spinning and honestly, I've tried to blog but I just haven't been able to get the words down on the page.

This week on Wednesday is Dylan's appointment with the child psych.  That alone brings up a lot of feelings and emotions for me.  I can safely say that when I dreamed of having kids, this was yet one more thing that wasn't in my picture....not even the big picture.  I never imagined that I would be taking my 5 1/2 year old to see a child psych.  I'm sure that any parent who has feels the same way.  I realized last night that I hadn't really done more than look glance at the paperwork they had sent.  I got it out so that Jason could have some input on the "important" parts.......atleast we agreed on all the answers.  That's a good thing, right?  Tonight I'll go through the rest which is all pretty basic info.

Dylan's days continue to be very up and down.....it feels like she doesn't have any "in between" days....they are either really good or he's a mess.  

We were working on his Valentine's for school and I'll admit that I wasn't really looking forward to that project because writing his name (or anything for that matter) are far from his favorite things to do.  He recently got a B-Calm of his own so I decided that it was good time to try it.  I was hoping that it would help him focus a little more on what he was doing.  It did work and I realized after the 1st few, he wasn't going to be a "quiet" activity for him.....but if this is what he needed to do for all 20 Valentines then I was just going to go with it.

Yep....everytime we worked on them, he did that exact same thing.  

I do have to say that he's been using his B-Calm a lot and I've noticed when things get a little crazy around her with his sister crying, he tends to go for his B-Calm more instead of laying on the floor with his hands over his ears.....and that's a good thing.