A Letter To Teachers

Open House for Kindergarten... They didn't see me coming. I was already tired before we got there. 

I LOVE teachers. I'd lose my sanity without them. I want my kids to be educated and KNOW I can't be the one to do it.

I LOVE teachers. Seriously. 

But listen. 

I  have what the school calls an "exceptional" child. It's not just a long day at school. It's a long day at home. 

When he's at school, I am at home trying to figure out our next move, 

next IEP, 

next meds to try and fail. 

Next doctor. 

Next list of things to try. 

To try and make things better. To try and not see my son suffer when his emotions shatter... daily. 

To try and find time for balance and support for his sisters and our family as a whole. 

So, it might not be fair to have the burden of teaching, learning, understanding, compassion, assistance and more... on the shoulders of a teacher alone. Even more a Regular Education teacher without knowledge or training in the Special Needs that must include in their classrooms.

 But sometimes if feels like the system does expect them to represtent with or without supports. 

I feel at once guilty for even asking for more help and understanding and also am frustrated when I don't. 

What do we do? How do we bridge the gap of understanding. How do we communicate with the person our child relies on to help navigate the days. 

 As a "Special Needs Parent" I am instructed by well written books to:

Be positive

Don't show emotions

Bring Food 

Volunteer

Be Helpful and Nice 

Use the "nice thing, critisism or request, nice thing" sandwhich - EVERY time. 

Be willing to comprimse. 

Be educated on the laws

Be educated on the cirriculum

Be your childs best advocate

Keep your files organized

Make sure everything is in writing

Etc... Etc.. Etc...

If you are wondering "what the heck is she tring to say?"... And perhaps you should be. I am trying to say that I come to school with baggage. I spent years searching for answers and trying to understand my child. Myself. My family. I send them to school because I am supposed to, because they need an education. But the system is not set up for my children. It's not an easy thing to figure out. 

I come with baggage. With exhaution from our journey. You tell me I "HAVE to believe its going to be a good year in order for it to be so". But I am on a long journy with hills and valleys. And nothing will get done if I just "believe" it will. 

I have to work on it, 

research it,

implement it, 

teach others about it,

try things,

fail,

recognize successes,

work on it some more,

and.....

I have to keep going.

WE are not trying to be difficult, depressing or pessimistic. 

If we were we'd just give up and not fight so hard. We are so optimistic we can do amazing things for our children, that we sometimes BREAK in the weight of our optimism.

We are a team. You and I. We are working together for my child to be "OK". But I bear the whole burden of what we do. I go on from teacher to teacher, school to schoool, therapist to therapist. 

I am willing to try and follow all the rules mentioned above. I will try to make it easier on you. 

But I just want 2 things....

Compassion and Communication. I will give you the same. And then we can be a good team.

Mom-Centric Advocacy

I  know I am missing some supports/ providers from this list. What am I missing??? 

Also, is it just me, or does the support focus 98% on the child in question, not supports for the caregivers? 

*sigh*

My Boys :)

There is light and darkness in all of our lives. My guys have faced and still face their own. They even struggle with each other sometimes ;), But unconditional love is a powerful thing. And I am grateful for it. I can't imagine my life without these two...

...

Project 52 - Week 6 "hands"

I don't know if it is is trying to get attention by acting out or if he just feeling attached to the little things he keeps "finding", but my kindergartner has turned to stealing...

His hands get him in trouble a lot, with his impulsiveness. He throws things, hits, pushes, hugs and loves on pets and people without concern about how appropriate it might be.

Its just like a compulsion. He gets consequences for these actions but doesn't seem to have the self control to recall the social "rules" about these things before the does them.

Just like lots of kids struggling to learn the rules, but a little harder.

So here he is, attaching special meaning to a trivial little object and tucking it away...

~

Raising Einstein

“Few are those who see with their own eyes and feel with their own hearts.” - Albert Einstein


I found this quote the other day and instantly found consolation.

We've been struggling with Wild Man's kindergarten experience. Its been a daily challenge to adjust and modify and advocate changes just to see if things will get better. Never knowing exactly what will do the trick. Just learning as we go. There is no other way to figure it out because there has NEVER been another him.

We have had hard days and better days, never easy days.

But this quote reminds me of how worthwhile our efforts are. I am reminded that even though every thing is HARDER for him (and us), it actually is a gift to raise one of the "few". We call our [special needs] kids "special" or "exceptional" for a reason. They really are.

Amazingly special and astoundingly unique. Einstein's mother went through it.

Whenever people try to console me about living with aspergers, they always go to the famous aspies "bill gates has aspergers and look how amazing he did, Einstein too!" and all I can ever think about is how on earth did their mothers survive, how did they cope, what resources did they have??? 

Because,

seriously...

 raising Einstein couldn't have been easy! 

Am I Normal?

Sometimes I feel like I am fighting an endless battle. The battle is trying to figure things out. Find the truth, seek the answers, make everything "exactly right". 


I have been admonished on this point and, rationally, I know, that we can't have perfection. So why do I so desperately want it? Why does it drive me out of my skin when my kids are just like me, demanding things be "just right"? 


On my journey to find answers about Aspergers, in order to raise my son "just right", I have fallen down the hole of self discovery. I am shocked at some of what I have stumbled over. 
I found a blog with a post that had a link to a quiz. I don't play farmville, but his game I did play. I am looking for answers you know. So I answered the 150 questions and hit "CALCULATE".  What did it say? 


You are likely an Aspie. 
Oh, okay. 


When I got my Fibromyalgia diagnosis, which I knew was coming, I was broken down. Lost and emotional and lonely. Perhaps my physical state and pain were factors. The same when I speculated that I must have OCD or be Bipolar (as I was diagnosed at 17) or whatever other mental condition I read about that spoke to my oddness and just might explain my DRASTIC under achievements. Or freaking out because my anxiety was too much and I couldn't breathe. 


But this was different. 


I wasn't upset, overwhelmed or over dramatizing... none of it. It was all more "matter of fact". More of an possible explanation. 


More comfortable than any other diagnosis I have ever tried on.


Since taking the "aspie test", I have taken the AQ here with similar results. I have pondered seeking an evaluation and diagnosis. I have looked back on my life, with a new perspective. I can feel my lingering angst over my childhood fading....  


Perhaps I should freak out, cry, get all "why me" on this thing. But I feel more normal now than before. I feel like my son is more normal than I thought. 


Maybe we can be us and be okay.

First Day of (Pre)School (how we got his IEP)

It has been a long time coming. That sounds like an exaggeration considering we are talking about a 4 yr old boy. But really a year in the life of a young child is a long time.


We got our IEP. It felt like it was by the skin of our teeth. Lucas "presents" as a normal (albeit wild and over dramatic) 4 year old boy. You have to see past all that to understand what is going on with him. Anyways. It was a challenge to try to explain WHY he needed help in school. His diagnosis by an experienced psychologist was our salvation in this matter.  I trust the one who has actually worked with kids like him to tell me if we're crazy or there really is something going on.


However, the timing was awfully close. The full report from the psychologist arrived at the school the morning of the IEP meeting. It basically changed what they were thinking. After 4 hours of reviewing his evaluations and what he didn't qualify under, he ended up qualifying under "AU" for Autism Spectrum, but it doesn't matter, as long as he qualifies. It is "individualized" after all.


His plan for now includes attending the special needs preschool at an elementary school in our county. He is starting with 3 days a week and half days at that. The bus picks him up at 6am and drops him off around 11:30. The teacher is working on the goal "he will pick up his toys after play". It's a place to start.


We were freaking out about kindergarten and how we were going to decide if he was ready. The director of the EC Department (exceptional children) assured us that he was getting his IEP at the best time (preschool) and that going into kindergarten we would be able to make it fit his needs.


Basically, they said, not to worry.


Well, thanks and that is wonderful, but my JOB is to worry. That's how we got here, getting services now, me being a worried mom TWO YEARS AGO. Worry works when it leads to questions and answers and ACTION.


So, for now. Our little man is in school. Today he got on the bus for the first time, with his tiny little book bag and huge grin on his face. I couldn't be prouder of him and us.

Turning a photo into a reminder

I have been struggling with how to cope with my little man. Especially since I don't completely understand him yet (as if we ever could). But this photo gave me moments of peace, just watching him be still and being able to see in his eyes. 

The psychologist who diagnosed his aspergers, told us his melt downs weren't just tantrums or him being defiant. They were him being shattered. 

Oh my heart. 

So I put these words here to remind me. He is not a bad kid.

A diagnosis

My son has Aspergers.


He isn't any different today than he was a week ago, but now he has Aspergers. Now he has an explanation. It's like putting glasses on. I keep looking at him thinking "of course, it makes so much sense...".

We didn't rush to this diagnosis. It's been a long year since we started seeking professional help. It's been a long 3 years dealing with his "quirky" behaviors. I knew in my gut that he was different. I knew he saw things different, felt them different, understands things different.


He's always been him. Now we understand why we don't understand. Now we can learn how to understand.