No more video games

We had an unbelievably difficult night last night.  We went to church like we do every Wednesday.  We went to the sanctuary, already full of loud and buzzing kids to sing music that is too loud at times.  Sometimes he does ok, but sometimes it is way too much.  Last night was a night when it was was too much!  He snuck out and went and got my phone out of the car.  He came back in and while fully singing the songs he played free flow on my phone, it keeps him calm.  But that was not acceptable to the Children’s minister and all hell broke loose before I could get over to the other side of the room. He grappled my little man to the floor and took the phone. This resulted in a full blown meltdown right in the middle of the sanctuary, with punching and screaming and the whole bit!  I managed to calm him down and we went to class! 

But alas I should have known better, he wasn’t really calm and about 10 minutes into class all hell broke loose.  Because I teach in the next room over, a little girl knocked on my door and said you’d better come quick he’s not doing so good.  It’s really bad.  I ran to the next room and the teacher has his arms restrained in an attempt to stop him from hurting himself.  She’s crying and he’s pissed!  I take him out to the hall and try to calm him down, I took my hand off him for 1 second and he was gone.  He took off running down the hallway at mach speed.  I went after him, but the little man is fast as llightning.  He got down a flight of stairs and into the parking  lot before I could get to him.  Then he started bobbing and weaving thru the cars in the parking lot towards the busiest road in town at dusk.  I shouted for him to stop several times to no avail, and good lord I was not catching up to him.  Panic was starting to set in, if he makes it to the road he’s going to get hurt.  I yell “Roo, Freeze!” He stops. Thank God.  He turns and runs to a big tree in the middle of the church yard and curls up in a tight little ball.  “I hate Evan!!!”  “I hate church”  We sit and we rock until true calm has set in and I scoop him up and we go home. 

Dad is none too impressed with his little man when we get home and he has packed up all his video games and removed them from the house.  No more video games!!!  Roo is beside himself.  He NEEDS them!  Dad tries to talk to him, to tell him why he couldn’t have the phone at church, why he can never run out in the parking lot like that again, why Ms. Amanda was crying, why Mommy was so scared.  He was having none of it, all he could focus on was no more video games. And he cries himself to sleep! 

It’s not a dirty word!

Use your big boy words…we say that a lot at our house. 

My son is highly intelligent, he can tell you everything you never wanted to know about maps and animals.  When he starts to recollect an activity he participated in or a story he read or heard, be prepared for the long road.  He has to give every detail, every tiny little nuance to make sure he explains it right.  It’s not enough to say that his class had a visit from a DARE police officer and they talked about safety.  He has to describe him, his uniform, where he stood, where all his classmates were sitting, what they talked about etc…

But when he is anxious or nervous, he reverts to baby talk.  I have to admit it gets on my nerves to say the very least and my first reaction was to correct and scold.  Your a big boy, your too smart to talk that way. As of late, I have realized that he is communicating to me something that he cannot express with his vast vocabulary.  I am scared, I am anxious, I am nervous, I don’t feel like I’m in control here, I don’t know what to do next.  That realization has changed how I deal with him.  Yes, I still remind him to use our big boy words.  But I am also very conscious of him and that he’s anxious and uncertain.  Depending on the situation I try to assist him to help him realize what is going on and what could come next. It is something we are working on. 

But yesterday this whole scenario came rushing back to me.  As I am at a training meeting for work, some of the ladies start discussing their kids.  You know, the normal, how many? How old? Boys? Girls? Interests? Cute stories? etc.  I am quiet and listening watching each mother as they beam with pride, secretly praying that my Roo is not in the principle’s office as we speak, hoping beyond hope that he has a good day.  Worried that I’m two hours away and can’t get to him fast enough.  And now its my turn and I give all the info. 3 kids, 2 boys, 1 girl, 14, 7, and 6.  Then the topic changes and we have now moved on to ordering lunch and one gentleman asks if they can take something off his lunch cause the texture bothers him, and another lady starts ranting about her nephew who has “sensory issues” and what a load of crap it is and how what he really needs is some disciplinee, and I can’t be quiet.  I have to defend him, the nephew, cause I get it.  But then I am challenged as to why I think I know so much about a kid I have never met and I have to say it.  I have to say that my kid is the same way.  My kid has sensory issues.  My kid is ….. I pause.  I am in a room of people I don’t know.  How are they going to take this? Will they get it? Will I be another mother who doesn’t discipline her children?  Will they see my boy differently?  I am anxious, nervous, I feel like I’m losing control, I don’t know what to do next!  And I see a vision of my sweet Roo come rushing to me, “Use your Big Girl words momma.”  My kid is Autistic. 

Why I even cared what a room full of strangers thought is beyond me.  I am not one to care normally.  I am who I am and often say things that are best left unsaid.  It bothered me all day.  Why was that so hard to say.  I say it everyday, I am not ashamed of my son.  On the way home I really started to think about it to process all the different times I have shared this nugget of info to the world and how I have presented it.  And now I think I should be ashamed.  Not of my kid, not of the fact that he is autistic, but of myself.  Because, when dealing with family and some others who don’t get it I avoid it at all cost.  I don’t want to hear another lecture about what a terrible mother I am, or how there was none of this autism stuff when we were growing up and how a good swat on the rear end will cure it.  I don’t want pity from stranger or friends alike.  I don’t want unsolicited advice on why he is the way he is and how to fix it!!  I know why he the way he is!  So when we go to places like my in laws or church we are careful to never say that word.  You know the word. The A word.  Why?  So what if their opinions are bridled with spite and unbelief.  So what if they don’t agree with how I raise my son?  So what if they don’t believe in Autism.  

I am not going to beat around the bush any longer.    My son is truly a beautiful boy and I am his momma for a reason.  He is smart, funny, and a little quirky.  He is Autistic, and no that’s not a dirty word! 

He doesn’t qualifiy!

It’s been awhile!  I haven’t had anything to say that hadn’t already been said or needed to get anything off my chest bad enough to write it down. But the stress of the last few months has finally taken it’s toll and it needs to go somewhere. Everyone seems to be writing about autism awareness or whatever way they want to word it.  And, while I do believe the world needs to be educated on the kiddos and adults who are living with it everyday, that is not entirely what I want to say. I feel like many many others have done a fantastic job of that, and I will bow out gracefully and leave them to it. 😉

We have been struggling to say the very least with a school system who is doing everything in their power to drive me crazy.  Their complete lack of compassion or empathy towards children with “disabilities”, as they like to put it, is sickening and disgusting.  With all that has been going on in National news, you’d think they could pull their heads out of the sand long enough to make a rational decision about how to deal with and educate the children in their district.  But sadly, their lack of empathy and understanding of these little one is ridiculously non existent and, quite frankly, just down right sad.

Our journey started in Dec of Roo’s kindergarten year.  I guess I shouldn’t say our journey started then, I guess I should say our realization and diagnosis of just how special Roo is started then.  He had a wonderful teacher who was quick to notice some of the quirkiness that is my Roo.  She didn’t name it but she did point us in the direction of getting it named.  And once diagnosed by a professional she smiled and nodded in agreement.  I went gung ho.  I read everything I could get my hands on, researched all the different things I needed to do to help him succeed.  I started searching for a way to cure him and then realized that a cure wasn’t what I needed.  I contacted all the right people and tried to get services put in place for my son and kept hitting brick wall after brick wall.  He’s to high functioning, he’s too smart, he’s too capable. He didn’t qualify. I was upset and didn’t understand, but he had a phenomenal teacher who got it and made modifications and he had a tremendously successful year. 

Then came first grade, honestly I wasn’t prepared for the hell that first grade would be come.  The teacher assured me that she was specially trained in autism and they were going to have a great year.  I had created a letter explaining Roo’s quirks, what helped, what made it worse, what he could and couldn’t eat.  She threw it away, although I didn’t know that till almost the end of the year.  She did everything in her power to get him out of her class, as did I to no avail.  Needless to say it was a huge relief to see that year come to an end.  Some people just are not meant to teach.  And even then with all the problems, he didn’t qualify for services.  By then end of the school year I was bound and determined to get Roo in the right class the next year.  I promised to stay camped out on the principals desk till I got my way and she took me seriously.

Second grade starts and we have Mrs. Miller.  YAY!!!!  In our neck of the woods, Mrs. Miller is the teacher to have.  She specializes in teaching kids at their pace and in the way they are comfortable with. She has been amazing!!  She has single handedly made sure that Roo can function in her room, his grade are over the top, and he genuinely loves her.  There is a sign on his bedroom door that says no girls, except Mrs. Miller. 🙂 But the tides turned when we returned from Christmas break.  His behavior became increasingly alarming and destructive.  And the school principal has been an all out rampage to get him on an IEP.  I have to admit, at this point I was not receptive.  I may have even thrown their own, he doesn’t qualify crap right back in her face.  They threatened to call the police on him if we didn’t get his help for his aggression.  We decided to take him to the Autism Center here and get some help.  They have assigned him a Case Manager and a Therapist.  We see the Case manager weekly in our living room and the Therapist monthly.  They think he is gifted, a genius.  I bring this to the school’s attention and they say of course he is we have always thought that.  Really!! Then why have you never expressed that to us till now.  Then they send a letter home stating if i take him out of school for therapy that he will be considered truant.  Seriously!!!!!  And, that he has to have an IEP to protect “him”, really them!  I get over myself and start doing the leg work to get him and IEP and I am met with — yep, you guessed it!! HE DOESN’T QUALIFY!!! He’s too smart! He’s too capable!  Seriously!!!!!  My anger is getting the best of me, my desire to punch someone is trying to override my need to hide my crazy!  Mrs. Miller is still the best teacher in the whole world and still goes over and above to accommodate my Roo.  The principal and the school system as a whole is ridiculously lacking!!!  But now the fear has set in, what will happen next year?  Mrs. Miller won’t be there to accommodate him, and we could just very well have a year like we did last year.  I am not overly impressed with any of the teachers available for third grade. And it’s a whole new building, with a new principal and new sights and sounds and smells. 
Of course this momma bear has not given up the fight, I will stand on my head to get my son the accommodations he needs to succeed.  The school has not heard the last of me yet!!!