Saturday, November 30, 2013

A very sad "all gone."

Thanksgiving. The time of year you spend with family. Also the time of year that missing family members stand out even more than usual.

Thursday was great. We host holiday things in our home because there is no way in hell we could take our demon seed anywhere else and expect to leave with their house still standing. Whoever shows up, shows up. Whoever doesn't, doesn't. We're cool with that. all of us. or so I thought.

Until Alex dropped a bomb on Friday.

Friday, Alex's Mommy and Sister came visiting. Everything was good, we visited- she bitched about Daddy visiting, I bitched about Daddy not visiting. Then we grabbed the kids and sat at the table to eat pizza. Me, Mommy, Sister, and Alex sitting at the table. Mommy was telling me about when Daddy came to "visit" Sister and they made him take Sister somewhere to actually spend time with her instead of harassing Mommy. He took her to Chuck E. Cheese and came back swearing it would never happen again because it was a 2 parent job. I asked Sister if her Daddy took her to Chuck E. Cheese and if she drove him crazy (yes and yes), I asked her if it was fun (yes), and then I hear a quiet, unhappy voice beside me, "all gone."

Shit. He knows. Why did I think he wouldn't notice? or care? What do I even say to that?

I look over at my sweet boy with his downcast eyes watching his fingers run through the ranch and over his pizza before grabbing a piece of pepperoni to pop in his mouth. He doesn't look at me, he doesn't say another word, his expression is blank and I can't tell what he's thinking.

Sitting there looking at my boy, no doubt whatsoever that he knows, I remember when Walter had no daddy. I remember the hurt, the anger, the confusion, the blame... and I wonder, is Alex feeling that? Does Alex wonder if it's his fault? My fault? Do I need to explain to him that he is absolutely perfect and daddy's douchebaggery is completely on his own self-centered self? Do I need to reassure him of how much I love him and that I will never leave him? Do I need to remind him that he is loved? Cherished?

I want to call his daddy and tell him what I want to tell him. I want to tell him what a piece of crap he is and to get over here and at least show his hateful face, give his son a hug, maybe even clip his son's freaking nails while he's at it. I want him to know that his son knows and the feelings his son is feeling because he can't spare even a few minutes on his way home from work, even though we are on his way home.

but I seriously doubt it would make a difference. And even if it did, a wise woman once told me that no judge would force visitation on a parent who didn't want it because if they had to force it... you would never want a child in that situation. It would not end well.

I don't need to reassure Alex that his is loved and wanted, he already knows.

My heart aches and the only thing I can do is match his careful expression, his quiet, even, matter of fact, unhappy tone, "yes, buddy, your Daddy is all gone."

Friday, November 29, 2013

Who the hell is Dave!?

I actually hesitate to post this level of parental fail on display for the entire world to see but, when has that ever stopped me? whatever. Here we go...

This is the story of how Dave came to know where we live.

Remember back in the beginning of summer I didn't know if it was such a good idea for Walter to get paid for doing nice things for people? And I decided that teaching him to be nice and helpful was all well and good but that he shouldn't be punished for helping by making him deny a reward that was offered? and working to earn what you want is just as important? That was fucking stupid.

The boys really like this Black Ops II game. They want everything that comes with it. Walter comes to me a few weeks back and says, "Mom, I want a mic for the game." I said, "Hell no." So Walter went and did some work for that mom who wanted to pay him for stuff and she bought him a mic as a reward. I would love to tell you how happy I am about that but that would make the difference between premeditation and temporary insanity. Sure wish someone had mentioned it to me before Dave came into the picture.

I was downstairs doing laundry Wednesday when I heard the Goofy Child talking on the game. He was talking to Jack. Who the hell is Jack!? Walter says Jack is an 8 year old kid and Goofy has been playing with him Wednesday morning and afternoon. Walter says he's got this under control, Walter says he's checked Jack out and Jack is cool. Ok, then.

I'm listening to the Goofy One, sounding desperate, shouting, "Jack! Jack! Don't close the door, Jack! Dave's out there! We gotta get Dave! Dave! DAVE! Jack! I said don't close the door! Dave's back there! Let him in!" I walk over to the TV and watch as Dave comes running and makes it into the door just in the nick of time. The zombies did not eat Dave. Dave was saved thanks to the Goofy Child's heroic determination to not leave a man behind. Proud mama, right here. Those are some awesome social skills, epic empathy. I couldn't believe what I just saw. Maybe this mic is a good thing.

Walter's got this. What can go wrong?

The neighbor mom comes knocking. She has a few minutes and thought she'd visit. I'm talking to the neighbor mom, uncomfortably aware that Walter is in the kitchen with us, while the Goofy One is downstairs with Jack and Dave. I put off the nagging feeling until I just couldn't take it anymore. I told the neighbor mom that I hesitate to let Goofy use the mic because how do you know who they are talking to? scary. I told her about Jack and Dave and she thought the same as I did... maybe Jack and Dave will be good for him. Maybe he needs this. Walter jumped in to explain all about how you can tell the difference between kids and adults and blah blah blah and he talked to Jack that morning. Jack is fine. Ok, fine. So I'm a little paranoid. Fine.

The Goofy One comes upstairs and I ask him about his friends. I'm still nervous about you know, possibilities so I want to make sure he knows about internet safety. I'll use his friends to explain. "Goofy," I say, "If Dave asked you where you live, what do you tell him?" Goofy doesn't even hesitate, "house number, street name, city." "No, buddy, you do not tell anyone your address." talktalkconversation. "Well, where does Jack live?" Goofy says, "I don't know." "Where does Dave live?" "He lives in St. Louis like me. and, he lives on *street name* like me! He lives in front of us! He told me." Walter asks, "Did you tell him first or did he tell you first?" "I told him then he told me."  Oh, good Lord.

*hysterics*

Dave does not go to Goofy's school. Dave is 13 like Walter. Dave knows who Walter is because Goofy told Dave all about him. At this point, Walter's head is on the table, his eyes closed, the look on his face is effing priceless. I made sure to rub it in that Goofy just gave every detail of who Walter is and his street/town to a potential pedophile. Walter was not pleased. Yeah? well, welcome to the club. I want to know who the hell Dave is and Goofy IS NOT using that stupid effing mic ever again until SOMEBODY talks to Dave. and I swear to God, if Dave is not found and verified, I will crush that damned thing and NO ONE will ever use it again. I don't even care.

Walter and Goofy go downstairs.

Walter and Goofy come back.

Walter looks a little sick.

Goofy wants to know if he can use the mic yet. He needs Jack and Dave.

Walter sends Goofy on an errand and  waits for Goofy to walk away and says, "Mom, there is no Jack and Dave." WTF does that mean!? Apparently, Goofy named his friends whatever he wanted to call them. They are really Christopher the 8 year old as Jack... and who the hell is Dave!? Walter swears there is no Dave. Goofy comes back in time to swear he plays with him in the back yard. I have to ask- "Goofy, my love, my sweet boy... can other people see Dave?" Well, of course they can. Ok, I'm going to err on the side of caution and assume Dave is not the new Fido and send Walter back down to fucking. find. Dave. NOW.

Walter finds the 3rd person in the game. The 3rd person is not Dave. The 3rd person is Legit Wasted. I'm pretty sure Legit Wasted is not 8 years old. Christopher aka "Jack" added Legit Wasted aka "Dave" to their game. Well, then, go ask Jack. Christopher the 8 year old is really Christopher the 10 year old, and Christopher the 10 year old does know Legit Wasted. He's played with him for a while, Legit Wasted is 12. BUT no one knows Legit Wasted's name. I'm a little concerned.

Actually, I think I might be having a heart attack.

I feel an ulcer growing.

But I'm still kind of giggling over "Jack" and "Dave" and I'm wondering what the boys think of their names, since they have to know the Goofy one was screaming THEIR names. Could you imagine? ok, a little more than "kind of." It's freaking funny, man. Just as funny as his cousin asking him repeatedly at Thanksgiving dinner, "Why do you keep calling me Stephanie? That's not my name." hilarious.

Finally, Walter gets ahold of Legit Wasted. Legit Wasted is a 12 year old boy in South Carolina and he has no clue what conversation the Goofy One was having because they only talked about zombies.

I have no clue what conversation *I* just had with the Goofy One.

Yup, I'd say his ability to hold a real conversation, recall and relay information, and retell a sequence of events is right on target, wouldn't you? Nothing to be concerned about here. Good Lord.

Here's the moral of the story: Do not trust a 13 year old to monitor internet safety for a younger sibling and be sure to talk to your children about what information they should and should not give online BEFORE they give the wrong information to the wrong person. Even if they "don't have" internet access.

Tuesday, November 26, 2013

Evaluations all over the place... and results.

The weekend was good, so good. I needed that. I thought, for a while at least, the darkness was gone, the storm was done. Until last night.

Last night, my good mood plummeted to the ground in a fiery crash- vacant hopes and broken dreams twisted into a heap of unrecognizable wreckage, the smoke rising from that burning pile of useless rubble was a dark cloud of anger and despair. Hopelessness, impotence. hopelessness...

Report cards are in.

The Goofy Child's ability to complete his work neatly (handwriting) is an "area of concern." His reading "needs improvement." His writing (content) "nears expectations" and everything else is fine. He's reading at a level 3 and by the end of term 2, level 6 would be meeting expectations. ...as expected.

Here's the trouble... He's behind...but I'm afraid not enough to qualify for help. Specific Learning Disability is one of the few that seem to require a severe discrepancy between ability and performance. If I remember correctly, Missouri's Department of Elementary and Secondary Education said 1.5 years. Nowhere near 1.5 here. If he doesn't qualify for an IEP yet, there is nothing I can do but sit and watch him fall further and further behind.

Letter reversals. I swear by all that's holy, one day, I think I'm going to snap. or cry. I think I'm about at the crying now.

I took Goofy to his Occupational Therapy evaluation today. She asks if I'm considering dyslexia because she noticed some letter reversals (congratulate me: I didn't say a word beyond "yes.") She thinks his constant movement (understatement) is more ADHD than sensory, maybe we ought to look at changing his meds. She thinks fine motor is a bigger issue than sensory. but, no, she doesn't think he needs a physical therapy evaluation because she thinks those troubles are sensory. I feel like my Goofy Child did when I accidentally connect my t and i, "what IS that!? What does it even say!? I CAN'T READ IT!" He starts OT every other Thursday beginning Dec 12. Which is also the day she'll give me a written report- maybe I'll understand that better.



Then came The Results.



Good News:


It's NOT *just* ADHD...

It's *SEVERE* ADHD- combined type with executive function deficits and a resulting IQ in the 5th percentile. Not because his IQ is in the 5th percentile, but because his ADHD makes it *look* like his IQ is in the 5th percentile- or, borderline intellectual disability.

Which, in her opinion, more than qualifies him for an IEP.

woo.


Bad News:


Absolutely every single one of the 25 suggestions listed...

are already being done.

with the sole exception of psychotherapy.


I cried my way home. Tears of relief. Finally, I have everything I need to get the child an IEP. Maybe once we have the IEP, we can still make goals for reading and writing. He can get OT through school. It'll be ok. Everything will be ok now.

Except... we've gone from Alex being pissed about me leaving for 2 1/2 evenings per month, dropped down to 1 1/2, went back up to 2 1/2 (with the 1/2 being the middle school PTA meetings every other month) and then said to hell with it, let the boy suffer, and added OT every other week and psychotherapy (potentially) once a week for a grand total of (potentially) 8 1/2 nights per month. Go me. awesome parenting strategy.

As for his reading trouble... it must be the ADHD. Writing? Must be the ADHD.

Writing doesn't matter, anyway. Her mother has horrible handwriting. It's ok. Even though it's the one area everyone agrees is a major concern... no biggie.

...why, yes, that is an alcoholic beverage beside my computer... how did you even know!?

Eh, whatever. OT already has at least one good idea- highlight the bottom part of the writing line to show him where to keep the lowercase letters :) Love it.

Monday, November 25, 2013

Stress Relief: Laughter. Who knew?

Friday afternoon, I got the phone call I've been waiting for. The results are in. I find out what they are Tuesday afternoon.

I knew with complete certainty that this is going to be a very long weekend. A weekend, not filled with anxiety over what could possibly happen, but with dread over the inevitable conclusion that my child is fine. The imagining of her sitting there across the table from me, showing me in black and white and maybe some colorful graphs the unarguable, indisputable evidence that his problems are all my fault. I worry too much. I help him too much. His delays are because of my bad parenting, his struggles are because I didn't push hard enough, I didn't expect enough. If I had only believed in him more, if only I had listened to the experts with degrees instead of thinking I knew so much... My chest still gets tight over those expectations but that's not what happened this weekend. This is...

Saturday morning, bright and early, the hellpups were ready to play. Running and jumping and shouting and waking the entire house up with their mischievous antics and excited yelps. Walter gave in and got up pretty early. The first thing he did was come running up the stairs to hit the power button on the radio and turn it all the way up. "Jingle bell, jingle bell, jingle bell rock..." Walter looked at me, I looked at Walter. Walter grinned at me, I grinned at Walter... we both looked at the Goofy One... his foot kicking to the beat of the song. If there is anything the boy loves more than Halloween, it's Christmas. Walter danced with Alex and the girl danced alone :)

We cleaned the house, we laughed, we planned the holidays, we moved furniture to make room for the tree. I am enthusiastically talking to Alex about Santa, trying to get him hyped up about it, not that he really cares- which is the problem, you see, because Christmas is effing magical and he must be as excited as the rest of us- when the girl comes running up, shoving her body between my chair and Alex's. She was NOT being left out of this discussion...

I asked her, the same as I asked Alex, "Are you going to see Santa?"
Her little 2 year old body tense and clenched with excitement, she shakes her head yes.
"Are you going to sit in his lap?"
"NO!"
"You have to sit in his lap! You have to tell him you were a good girl and tell him what you want for Christmas!"
*excitement* *clenching* *enthusiastic nod*
"Are you going to sit in his lap!?"
*excitement* *clenching* *enthusiastic nod*
"Are you going to tell him what you want!?"
*excitement* *clenching* *enthusiastic nod*
"Are you going to tell him you were a good girl!?"
*excitement* *clenching* *enthusiastic nod*
"*suspicious glare* ...were you a good girl?"
*excitement* *clenching* *enthusiastic fist pump* "NO!"
I laughed so freaking hard. At least she's honest, right?


Saturday went and Sunday came... and things stayed the same. The radio on, Alex and the girl just dancing away- spinning, spinning, spinning, little bit of an awkward shimmy in the girl's spin. Alex is a great dance teacher, just sayin'. The Goofy Child continued his ridiculousness, as evidenced in this status update:

Oh, man. I love my Goofy Child.

My brother bought the girl a Barbie- the one with the nightgown- last night and bought swords with ninja turtle masks for Goofy and Little D.

My brother says the Goofy One loves his new weapon. The girl is running around with the mask and sword while Goofy has the Barbie. He's raising her skirt saying, "Ooooooo, she's going to blind you!"

Lesson Learned: I will never again tell my children that that will make you go blind.

Later, getting back into the school night routine, it's bath time... The Goofy Child plays in the bath tub until he yells at me that he's done and I go wash him. Tonight, the water is taking forever to warm up, "Did you use all of the hot water!?" "Well, I was cold." uhg. The logic. Too freakin much logic. I turned it all the way to hot to get it warm enough to wash him and did a quick job of it. Blow drying his hair, he says, "Mom, um, I think I used all of the electricity. That's cold."

Bed time comes and I'm sitting there, as usual, my music blasting in my ears, with the girl tucked up beside me, both of them screaming their freaking heads off, when the hilarity of the situation hit me. Huh, I think to myself... how can I just sit here and not listen to "my" children howl in torment, their screams of protest at this cruel, cruel world being ignored by the person who should care the most!? This is not right. This is not being a good mom or grandma. Their screams should be recognized. Their complaints should be answered... So, I did what any good mom/mawmaw would do, I got up and danced my heart out, I lullabied the hell out of them until they begged for mercy and swore to lay quietly. "...find out games you don't wanna play."  Mama wins. and, no, dear husband, I don't care if I am supposed to be the adult here.

Here it is, Monday morning, one day away from the appointment, and I'm still in a good mood. Tomorrow I'll probably cry but one way or another, the answer won't tell me anything I didn't already know. 1. I suck at parenting or 2. my boy's got issues. Either way, my kids are as they have always been and life goes on. I'm ok with that. They're pretty great.

Friday, November 22, 2013

This is our autism.

Usually, I don't talk about what the entire world is talking about because I really either don't care or don't have anything to add that hasn't already been said. I get tired of reading the same thing over and over. It gets to the point that if I see an article is about the topic I've had enough of, I won't read it. ...unless something in the delivery or the author really calls to me.

Today, I have something to say.

Almost 2 weeks ago, Suzanne Wright, co-founder of Autism Speaks, wrote a call to action. This started a shitstorm in the autism community. Autism Speaks is as triggering as vaccination, causation, cure, and person first language. I try to stay away from all of the above.

...well, not person first language. I will totally argue my right to say that my son is autistic. To recognize that his autism is as much a part of him as his gender and his race, and in no way should he ever be made to feel that his neurology is a disease, a birth defect (you can't see me fuming at that, Mr. Ford & Associates, but I am.), that there is something wrong with him, that he is the reason for my heartache or despair. That he is less valuable as a human being, a drain on the "normal" people, or that he needs to be eradicated. He is not an epidemic or a national health crisis. He is not missing or broken, he is not breaking up our family, he is not causing me any unnecessary stress. He is Alex. He is my son, he is wonderful, he is a pain in my ass, and he is autistic.

Oh, look at that. I already summed up my argument against, not only Suzanne Wright's post, but also against Autism Speaks. Our life is lived moment by moment, but not in despair. I do live in fear that I will lose my son, he is a wanderer, but I am not mourning what is not already lost. Alex is not lost. *yet* *knock on wood* Mentally. Alex is not lost mentally, not trapped in his own world, not absent from reality. He is right here, he can easily be "found" if you care enough to look.

I do not support Autism Speaks. I, personally, find the message they are spreading about what autism is to be disgusting and I want no part of it. I do not care if you support Autism Speaks. This is a personal choice. Look at it and decide for yourself. I will not try to convince you not to support them, you don't try to convince me to support them, and we'll call it even.

The autism that Autism Speaks portrays is NOT our autism.

The autism that many bloggers are portraying in their arguments to Suzanne Wright- the always happy, joyful, never a problem autism- is NOT our autism.







 
This is our autism.

All of the moments that are huge, and all of the moments that are just... normal. He's living his life just the same as you are. Moment by moment. Day by day. The clock keeps ticking, memories keep being made. Life keeps being lived.

This is our autism. 

A mixture of both worlds; the terrifying picture of a family in crisis- afraid to sleep, afraid to look away for even a moment, worried about what comes next- and the beautiful picture of a happy, smiling family living a charmed life.

I think you call that a normal life. At least... it is for us.

Yes, we need a national plan. Medical. Educational. Home. We need to make sure all of our children are getting the services they need, that our families and our schools are getting the support and education they need. That the adults are getting the services and supports that they need. Yes, we need help NOW. Real help.

But we also need a more realistic view of autistic individuals. Adults. Teenagers. Children. Toddlers. They are not the sweet little angels some make them out to be, and they are not the devils others make them out to be. Reality is somewhere in the middle.

Thursday, November 21, 2013

Parenting and Responsibility

Now, this post is probably going to get me into a lot of trouble with a lot of people but, today, I don't even care, it's not like it's not all true. If anyone should happen to be reading and don't like what I have to say, please do not call my husband to tattle on me. That is annoying. If you have reason to be offended, you probably have my phone number. If you don't have my number, there's a reason for that.

I am indignant. I am mad. Still. Even after talking to that lovely man at the middle school.

Ok, so, what started my descent into airing the family's dirty laundry for all to see? This...

I went to pick Walter up from tutoring as I always do. Walter looked upset when he got into the van and he says, "that woman." Huh? That Woman was upset that Walter was not picked up at 3:55. She wanted to know where Walter's parents were after tutoring, Walter told her that I had to get his brother off of the bus and it would probably take about 15 minutes. She said that was unacceptable because tutoring ends at 3:55 and I should be there at 3:55. He repeated that I had to get his brother off of the bus, she told him that school starts at 8:00 and asked if he would leave the house at 8:00 to be there on time, she said that I should leave earlier to get there on time like any responsible parent would.

Now, I really don't think there's a way to misinterpret "like any responsible parent would." Not for Walter, and not for me. and I am mad.

I bust my ass for these kids every. fucking. day.

I have been with my husband for almost 7 years now. I helped him bury his daughter, I was there the whole time. I was there for what came after. I have helped him decorate her grave every year and tried to incorporate her into every part of our life. I have helped him raise his boys since they were 13 and 11 years old. We have been through nightly homework battles, refusing to go to school, sick cats, the loss of a first pet, the fighting over chores, the missed buses, the asthma attacks, alcohol abuse, drug addiction, rehab, teenage pregnancy, teaching them to drive, making sure they got to work every day, first tattoos, first dates, THE talk... I have been there every step of the way and I didn't back down no matter how hard they pushed or how loud they yelled. Through it all, their mother couldn't take care of them because she has substance abuse issues and a tendency to make bad decisions that take her away for 6 months to a year at a time.

I had a niece that lived here for 2-3 years because her mother was sobriety challenged, between homes, and wasn't able to provide for her. For the time she was here, I made sure she had a place to sleep, a place that was her own, I got her up in the mornings and made sure she went to school, I enforced the chores and rules, I helped with homework, I did the day to day care.

I had a friend of the oldest living here for almost 3 years because his parents couldn't handle him and just tossed him out. I made sure he did what he needed to do. I made sure he got to school, I made sure he got to and from work, I made sure he had a roof over his head, food in his belly, and the knowledge that someone cares enough to do so.

I've had my nephew every other week for the past 2 years because there is no one in the family who is suitable enough and/or available to take care of him while my brother is at work. That boy knows he's loved here. He knows there are rules, expectations, routines. He knows when he is here, he is home and that will never change.

My grandbaby has been here since July because her parents need a chance to get on their feet and get stable enough to give her a good home and take care of her. She has stability. Security. Routine, structure, the adoration of 3/4 uncles and devotion of grandparents all around. She is an important part of this family and never has to question if she belongs.

On top of all of THAT, I have the three kids I gave birth to to take care of. Walter's father bailed as soon as he heard "pregnant" and Alex hasn't seen his father at all since last May... And *I* am the irresponsible one!? Are you kidding me? *I* cared for all of these kids. Their parents trusted me enough to be a *responsible* caretaker that they left their kids in my hands while they got their shit straight and I think I did a damned good job.

I am doing the best I can. I'm not perfect, and I'm damned sure not a saint, but there is no way in hell I could be called irresponsible.

When I signed Walter up for tutoring, I told them that I would be late because of Alex's bus and asked if Walter would have a place to go every day for 10-15 minutes. The secretary told me that would be fine. Like any "responsible" parent would, I notified office staff ahead of time and made arrangements for the time between when tutoring let out and when he could be picked up- before I even turned in the permission slip.

I went up and talked to the principal today. He does not think I am irresponsible. He understands the reason I am late, that it was approved ahead of time, and he says those few minutes are NOT a big deal. The teacher who made the comment is upset that there are parents who are abusing the tutoring, using it as childcare and not picking their kids up until 5:30. Because of this, the teacher isn't able to be home for her own kids. While I can understand her frustration, I am not abusing it. I have a valid reason for being 10, never more than 15, minutes late to pick my son up. I thought, since she has worked in the Special School District for more than a few years, if she saw Alex's Behavior Intervention Plan with the documented behaviors of dropping and eloping, and the Notice of Action for a Physical Therapy evaluation because of his difficulty with stairs she would understand why I can't let anyone else get him off of the bus outside of the times I have absolutely no other choice, but the lovely man said she doesn't need to know my reasons. I have reasons and it was approved ahead of time and that is enough. Works for me.

Before you judge someone on what you think you know, think twice because they don't usually tell you everything.

Wednesday, November 20, 2013

The Eye of the Hurricane

Yesterday morning started with the usual hustle and bustle, madness and mayhem that normally begins before the sun rises. The bickering, the torment, the thread of blood and tears. and then... for just a moment the world stopped and I was able to catch my breath.

Sitting on the front porch, waiting for Alex's bus. My baby in my lap, just rocking. side to side, side to side. Slow and easy. Breathing in the cool air, feeling his solid body in my arms, his baby soft cheek, the smell of lavender in his hair... my baby. just rocking with his mama.

Too soon, the bus comes and I reenter the insane asylum that is our home. Craziness and missing backpacks. get that child gone and collect the things I need to take to school. We're getting ready to go when both of the girl's parents end up in my kitchen. and I go alone. ye-ah, with nobody else. I love it. I get home and realize... I have no kids! omg, I have no kids! I look around and think... The Goofy Child's psychological evaluation is done, speech eval is scheduled, OT eval is scheduled, I read what I need to read, I know what I need to do and my timeline... I AM FREE!!!! WOOOOO!

For the next 6 weeks or so, I don't have to think about IDEA or the procedural safeguards or IEPs or 504s or related services (which, yes, in Missouri therapy is a related service. Alex's IEP says so ;) ) I'm done until after Christmas break. Done. What a relief that is. I look ahead at these 6 weeks or so, and I feel light. I feel like the storm has stopped and I have time to step out into the sunlight and thank God for a beautiful day.

I go on to link some Jellies and then clean the house like I haven't been able to clean it since school started. I've got my music on and I feel good, just doing my thing. Noon came, the parents had things to do, and the girl stayed so I dropped my wild and crazy partying for nap time.

The girl is in her bed, I am in my chair. She's laying there, looking at me quietly, I kick back in my chair, cross my feet, cross my arms, tilt my head back, close my eyes and listen to the music playing lightly in my ears, not blasting like it usually does. "Today I'm not doing anything. I just want to lay in my bed..." YES! It feels good to do nothing. I crack my eyelid and peek at the girl who's looking at me like I've lost my freaking mind. Aren't I going to make her close her eyes? Tell her to go to sleep? Nope. I'm going to sit here and listen to my music.

She's laying there, I'm sitting there. We're both relaxing. As I relax, and just let my mind wander... I'll be damned if it didn't start exploring the procedural safeguards and listing the things I need for the formal written request.

Next thing you know, I've got pieces of IDEA, the procedural safeguards, printed articles, sticky notes, a highlighter and an ink pen scattered around me as I quickly search for what I am looking for and add a few more sticky note tabs. Then it clicks. I know exactly what I'm missing... Missouri's plan for compliance. I need state regulations. The state law for special education. And, I found it. Missouri State Plan for Special Education. I also found a letter from Missouri's DESE to OSEP asking for clarification on Prior Written Notice and OSEP's response.

 and that's when it happened...

That's when I got it.

You don't sign the IEP as a whole (not here), you sign the Notice of Action. Goals do not require a Notice of Action. Change in services require a Notice of Action.  (I'm pretty sure Alex's teacher said that...) You sign the Notice of Action... and this is where you can note your parent attachment- *woot*

but then, damnit. One thing led to another and Prior Written Notice IS a Notice of Action. They don't have to give me a Notice of Action (Prior Written Notice) before the IEP meeting. They have to give me a Notice of Action (Prior Written Notice) 10 days before they intend to take or refuse to take actions related to the identification, evaluation, or educational placement of my child. Which they say is 10 days after the IEP meeting. That sucks. But, at least we still have access rights... right? I hope. We'll see.

The sunshine was nice while it lasted.

Sunday, November 17, 2013

PTA Dropout

At least I'm consistent, right?

Ok, so, this is what happened, I started out wanting to go to all of these things and wanting to be part of all of this stuff and to do anything I could to help our schools and help our kids... I really wanted to get out of the house for a few hours/month.

By the time October rolls around, when it came time to go to the PTA meeting, I was sighing. I just didn't want to go. I thought maybe it was just part of the depression, I just needed to do it and it would be FINE. So, I grabbed my purse, threatened my devil's offspring and dragged my feet all the way there. I have no idea what happened in this meeting. There were kids and chatty women and people trying to be all nice and strike up conversation with me and I know I came off as a bitch and I am sorry for that, but I didn't come to socialize. I came to be aware of what's going on in my kids' schools. To help where I can. If someone is trying to talk to me about other things, I miss every single thing that just happened across the room. I missed every conversation that was related to the reason I was there, and I still have no purpose. I'm not participating in anything, there is nothing for me to do. By the time I left, I was dreading the next meeting even more, so, no, not the depression.

November was the first meeting of the middle school PTA. I walked in and was welcomed with a smile, offered a seat... which sounds like a small thing but it's not. There was a whole lot of chatting here, too, but the chatting was related to what was being discussed and not distracting at all. There weren't small groups talking about their own things while only a certain few discussed business. Everyone had a part. Everyone had a voice. Everyone was heard.

I've gotten a little hyper-vigilant when it comes to disability and inclusion. a little too watchful, a little too ready to be angered. Not that it isn't worthy of being fought for, but sometimes it's not needed. Like, sometimes people of different abilities are very much considered in every decision. Like in the middle school. I'm not sure how much I can say and how much I can't so I'll just say that just when I think I have a grip on people, they surprise me all over again, and Walter's principal is a good man.

I learned a few things at this meeting. One of them being that the school is not responsible for the self contained classrooms. The self contained classrooms and anything that's needed for the Special Ed kids has to be taken care of through the Special School District. Kinda like the girl. She's here and I take care of her but her parents are responsible for making sure she has what she needs. I found out that this is what happened with Alex's touch screen computer in first grade. They promised me touch screen because he could use it at the time. then they didn't follow through- they had the equipment but it wasn't hooked up. One of my lists of complaints included the touch screen, they said I was bringing that problem up to the right guy because one of the SSD big-guys was there. I didn't get it at the time but now I do- the PTA provided the touch screen computer, the SSD didn't hook it up.

I learned that the regular school district's money cannot be used in the self contained classrooms. That the PTA can raise money for the SSD kids because those kids belong to the PTA, too. and they are eager to do so. The PTA can do their part, but then it's the SSD's responsibility to do their part.

This meeting was wonderful, relaxing, a joy to attend. and it made my reluctance to attend the elementary PTA meetings even heavier. more obvious. I could have just soldiered through it. Until I got a text message almost at the end of the middle school meeting, "Are you on your way home?" My husband doesn't text me while I'm out. ever. This is scary. I text back, I tried calling- nothing. I raced home and found my husband in the bathroom with Alex.

Alex strongly objected to my being gone. Objection painted all over the place. Shit, alright, I have to figure this out. I must pick and choose and cut my commitments somewhere.

I quit the elementary PTA. When the time came, I just didn't go. I'm thinking of what else I can do. The support group offers child care... he can go with me. ...and be watched by complete strangers who may work in the school but still don't know my baby. But this could help ease him into being more comfortable with more staff members 1 1/2 hours per month... but they're strangers!!! How can I just leave him with someone? what if he needs me? What if they don't know what they're doing? I'm sorry, I don't mean to offend anyone, I know you want the line cut out, but there is a difference between high functioning and low functioning. sometimes a big one.

I told him where we were going all day long. We packed up and left, I told him where we were going. I left him in the room with a person he was happy to see and eager to hug. I looked back at his sad little face sitting in the chair, his anxious eyes on me, while he fiddled with his teething ring before I turned from the door and I tried not to cry.

That was the longest hour and a half of my life. I loved the conversation and sitting with the ladies, but I watched the clock, waiting for the second I could run for my baby. Listening for evidence that something might be wrong, trying to hear anything that could indicate Alex needed me.

The special school is thinking about changing the PTA meeting time from afternoon to evening to try to get more parents involved. I'm excited about that, good thing I already dropped the elementary. Now I need to figure out a new plan for Alex... maybe if he continues to come with me to the support group, he'll be ok with me leaving him home for an hour or two one night every month and one night every other month. Right? That sounds good...

Until the clock dings, the meeting is over, and I walk in to see my baby terrorizing the place. Rubbing his face on the trampoline and then jumping up and running and vocal stimming and wanting to grab books (most likely to throw them), the aide looking shell shocked and staying no more than a step behind him (she learn that the hard way, I wonder?), I try to walk him out and he's dropping and pushing and vocal stimming and Good LORD!

On the way home, God smile down on us and had the perfect song playing... I blasted Avril Lavigne, "Chill out, what'cha yelling for? Lay back, it's all been done before..."

 
 
By the time we got home he was manageable.
 
The next morning, he still refused to look at me or talk to me.
 
That evening, He was using one of his rare words about support group, "again." With his half-fisted hands in the air, flying around his head, barely able to contain his excitement, huge smile on his face, eager look in his eye, he wants "again."

This might work :)

Saturday, November 16, 2013

Guest Post: IEP a teacher’s perspective …the word is Humanity

You've been with me over the past weeks, or even the past years as I've gone through IEP meeting after IEP meeting- some good, some bad, some leaving me celebrating and some leaving me in tears but through them all, the emotions leading up to each and every meeting have never changed. IEP meetings are hell for the parents, there's no question about that. But, I did have a question.... what are those meetings like for the teacher? What do the teachers want to say? I asked some teachers. This is my friend Lori from I'm Bob.

In addition to being a rock star mommy to Bob and the teenager, blogger at I'm Bob, and President of Bob's Facebook Fan Club, Lori has a Masters Degree in education and spent more than a decade of her life dedicated to teaching our children.

Lori wrote this post and graciously allowed me to publish it here for you...


  IEP a teacher’s perspective …the word is Humanity
 

It has been a year and a half since my last IEP meeting. A year and a half since I sat across the table from parents to discuss their child’s future. A year and a half from feeling the gut wrenching hurt of telling a parent where and how their child struggles and how ineptly as a school system we are going to try and remedy this. It has been a year and a half that I have not seen a parent cry or sit there like a deer in the headlights while the committee *the team* explains their child’s educational plan. It’s been a year and a half since I was in a classroom molding young minds, don’t laugh, moreover doing what I love. Because a year and a half ago, my son was diagnosed with autism and I left the children I advocated for, to do so for my own.

On this incredible journey, and it is incredible, along with awe inspiring and humbling as a human being. I have searched out others going through the same. In doing so I have found a wonderful community of mothers and fathers, writers, advocates, and truly kind and inspiring people.
I read their blogs, no I devour them. This time of year the majority of them center around IEP meetings for their children. They never cease to amaze me. The amount of knowledge that abounds from the parents. How well they are prepared for these meetings with enough ammo to take out a third world country in the battle for their child’s future. However, from my experience in a small town, very few, if any had the skills these other parents have, with the exception of one mother who struck fear in hearts of administrators and counselors alike, she always made me smile at her tenacity and knowledge of her child’s plan and rights. She truly was one bad ass!

One of my favorite momma bloggers….HomeStyle Mama with a side of Autism....had this to say in one of her latest blogs.

I guess I can’t blame them for their assumption that I, as the parent, would be ok with sketchy details and minimal information because I’m starting to learn that a lot of parents aren’t demanding details, and not just on the IEPs. They are so busy with their lives, so trusting of the schools to do what’s right, that they don’t want to be involved or don’t know how to do it. Yes, I know that’s a blanket statement and not true for everyone but all these years that I couldn’t do it, plus what I’m seeing in the schools now that I actually have a chance to show up leads me to believe it’s true for more than some. Everyone has their reasons, and I’m not saying they’re wrong.

Parents who are less versed in the process and understanding of their child’s IEP, do just that. They trust. They trust in *the team*, to do what’s best for their child. As a teacher, no as a child advocate, if you sit across the table from a parent who needs your help for the betterment of their child’s education, for God’s sake, help them. Help them understand their child’s plan, help them know their rights, just help them period. Exercise your God given gift of humanity; kindness or compassion for others. Speak for those who do not have the knowledge or experience to navigate this difficult system.

Just help….it’s the right thing to do.

Love and hugs,
Lori
Aka former teacher, advocate, Bob’s mommy

Friday, November 15, 2013

Meeting With Alex's People

One of the questions I had in the meeting with Alex's principal, assistant principal, and his teacher yesterday morning was if I needed to be ready to discuss a change in placement. "Discuss." I love that word. It sounds much more civil than what I'm willing to be ready to do... Not threatening at all. "Discuss." Like a cooperation. "Deceptive." Ha! It matches.

Here lately, a lot of people have been mentioning the middle school in conversations about Alex. The principal in the whole request for physical therapy, the middle school nurses eager to get their paws on my baby, the teacher at the IEP meeting... why does everyone keep talking about the middle school!? I'm telling you now, he's not going there. No. Not gonna happen. uh-uh.

Disclaimer: my paranoia about Alex being kicked out of his school could have something to do with my surety that I've been driving the man insane... or my husband's constant warnings that I'd better back off before they ban us both... maybe I ought to rethink my approach. Doesn't matter how good the school is, rules are rules, man. but I'm working on tact- I said "discuss" and asked if someone was still "not a good fit" even though those weren't the words I wanted. *progress* anyway,

And so, this song goes out to the lovely and talented Special School Principal...

 

...so talented. seriously. He can derail any of my arguments quick as lightning. Fast like faster than a speeding bullet fast. "Oh, you have a problem? Come on in, have a seat, let's talk. Hey, look at this really interesting thing." *derailed* and I don't even notice until way later- crap. he did it again. mhmm, I have got to keep my husband away from this man, I'd never win anything ever again. Luckily the distractions were held like the ace up his sleeve until the part where we sort of came to an agreement... kind of. well, we each knew where the other stood, but we'll get there...

When it comes to change of placement, I was willing to, at the least, read up on Least Restrictive Environment, the provision of a Free Appropriate Public Education, and the fact that the severity of his disability has to be considered in deciding placement, to get any and all outside evaluations I would need to back up my argument, and at the most, to stand in the special school parking lot with my mp3 player and crappy, crackly external speaker raised, screaming my song, "And I am telling you, I'm not going. You're the best principal I'll ever know. There's no way I can ever go... No, no, there's no way... No, no, no, no way I'm living without this school, I'm not living without you guys. I don't wanna be free, I'm staying. I'm staying! And you, and you, You're gonna love me!" I'd do it. I so would. If that's what it takes to keep my boy in the best school he's ever been in... I am not above trying anything.

...even begging. Begging is always an option... That might go over better than what sounds like a cat on a ride in the blender serenading him from the parking lot. *sensory nightmare*

Fortunately, there's no need to go that far. There are no change of placement plans in the near future. *PRAISE THE LORD!* (and *suspicious glare* considering no one is making eye contact with that denial...)

The main reason we were gathered, though, was to discuss staff change and behavior reports. I told you the other day, but let me refresh your memory... Last year (top), this year (bottom)


 
 
See it? Major progress. Major progress because he has the same aide as last year, I'd bet anything on it. This means, I want it again next year. Someone, anyone. Well, not anyone. I don't want Aide1 because she had him last year and I don't want anyone spending too much time with him and getting too big for their britches. Alex does want Aide1 and he's not backing down. That child just doesn't make any sense! I tried to talk to him (there's not talking to him, boy is stubborn!) I told him I don't want Aide1 next year, I want teacher and/or Aide2. He disagreed. He wants Aide1.
 
Side note: they don't have to have words to talk back. Alex uses facial expression, nodding, shaking his head no, slapping the table 3 times for "more", and using echolalic words/phrases- and he wants "more" of Aide1 because she makes him "happy." I argue that that doesn't even make sense because Aide2 is his favorite! Isn't she his favorite? Nod, but he doesn't want her. See? unreasonable brat. I threatened a full out hair pulling cat fight with Aide1 over who the "mom" was and he just laughed. Typical male. Loves to have women fighting over him.
 
Not that our planning makes a difference, we don't get a real choice in staffing decisions (as it should be), we can just ask and see what happens, but the time spent talking and letting him have a voice in making the decision (even though his choice so is not going to happen this time, I'm pulling rank.) is a priceless gift. Alex's communication is new and has been gradually growing over the past few years until today when we can sit at the table and have a full conversation when he's in the mood. I'm loving it.
 
This is the thing I love about Alex's principal... He's listening. He hears, he sees, and he's willing to try doing whatever Alex needs, there's no arguing with the charts- this is impressive. BUT, he's learned from past mistakes and refuses to promise me anything regarding who will be with Alex next year. It's not what I wanted to hear. I wanted promises, a plan, and if I got them, I wanted them documented in his IEP (Individualized Education Plan, with emphasis on Individualized. as in designed to meet individualized needs.) or his Behavior Intervention Plan (which is also in his Individualized Education Plan). I want one familiar person working with him every year whether it's the teacher, this year's aide, one of last year's aides or someone he worked with the first year, I want one person he knows, I want overlap between old and new, and I want the promise written in stone.
 
But he knew better. He knows me better than that. He knows the unpredictable nature of staff change better than that. He will not make a promise he's not sure he can keep. (*this is me happy dancing- PROGRESS!!!!*) But, he has another idea... They are planning on improving their introduction letters at the beginning of the year. He's working on giving us more warning about changes. This is awesome for ME.... Alex...? not so much, I don't think. He said he'll think about it and wants to get together later in the year to discuss it. (*wondering if his "discuss" is the same as mine...?*)
 
We'll see what happens.

Thursday, November 14, 2013

Guest Post: The Table

You've been with me over the past weeks, or even the past years as I've gone through IEP meeting after IEP meeting- some good, some bad, some leaving me celebrating and some leaving me in tears but through them all, the emotions leading up to each and every meeting have never changed. IEP meetings are hell for the parents, there's no question about that. But, I did have a question.... what are those meetings like for the teacher? What do the teachers want to say? I asked some teachers. First up, my friend Shanell from GoTeamKate.


Shanell Mouland is a teacher/blogger from New Brunswick, Canada. She can be found blogging here, on Facebook here, and on Weebly here. When she's not blogging, she living and loving life with her wonderful husband and two gorgeous girls- Grace and Kate.



The Table
 
 
I dread making the call, you know. The one where I have to tell a parent I need to organize a meeting to discuss their child's individualized education plan. If I am being honest, I will often ask the homeroom teacher to make the call, for fear that my voice will shake. The call, for me, is often more painful than the meeting. I guess I empathize with those parents and the anticipation of something can often cause more angst than the thing itself.

I am a special education teacher and I also have a daughter with autism. I guess I have a pretty unique perspective because I sit on both sides of that table.

When I sit on the parent side of the table, I am ready for a fight. I come armed with legal documents and a fierce attitude. My mantra keeps repeating in my mind: My child is paramount and her needs must come first.

I stare at the people around the table and wonder if any one of them has any earthly idea what it is like to have a child with a disability. Do they understand that we wake up and go to bed fighting? Do they care?

I won’t elaborate because you know all about this side of the table. You could write the book about this side of the table.

I would like to share with you a little perspective from the other side of the table. I can’t promise all of the educators you deal with feel the way I do but I can share my experience and you can take it for what it is; one teacher’s take on the IEP process.

Like I said, I dread making that call. Want some seriously honest and potentially career damaging testimony? I always feel like I am faking it.  Who the hell am I to call these people and ask for a meeting to discuss crucial goals and outcomes for their child? Am I seriously considered the ‘expert’ in the room? Me? The one who left the car running in the garage last week? The one who went to work wearing two different shoes and only one was a heel. These people are going to let me weigh in on what is best for their child? I cannot screw this up.

  I have the formal education; the Master’s degree, a stack of books beside my bed to supplement that knowledge and a desire to do a good job but I have never felt truly prepared for one of these meetings. Even though I recently, ‘joined the club’ when my daughter received her diagnosis I still don’t feel like I truly deserve a seat at that table. Here is why:

I am not an expert on autism, or special needs education or the school system. I am expert on my daughter, and her behaviours and needs and I hope in some small way this knowledge transfers and allows me some understanding of what your child needs.

I am not an expert on child development or current and progressive autism therapies or inclusion but I aim to be and I want this to be encouraging for you. I am not an expert on parent/teacher relationships or teacher/student relationships or any relationships for that matter but I implore you to trust that I have the best interest of your child at heart.

When I sit across from you with my notes and documents I am nervous and I fully realize the significance of this meeting for you. I fully realize that the things that come out of my mouth might not be what you want to hear. It is ok to tell me that. I will stutter and become flustered because I have a lot invested in this meeting but I understand that I will never have near as much invested as you do...

Until I am sitting on the other side of the table.

Wednesday, November 13, 2013

Goofy: Serial Killer in the making?

Oh, Lord. I knew. I posted a status update and I knew someone, somewhere would be horrified by my parenting choices. But I figured it was worth it because *I* thought it was funny as hell. They must have missed the post where the child named his hamster Jason Freddykrueger Screamwoods.

"We got a phone call from the school today. My husband hid in the bedroom with his phone so I wouldn't know he got the call and jump in to take over.

The counselor's problem: Goofy threatened to kill a kid today.

The threat: "Let's play Jason! I'll kill you and you kill me!"

Goofy doesn't see a problem but thinks whatever it is is my fault for recording the movie for him *because Dad says it's the movie's fault.

My husband thinks the problem is my parenting.

I think the problem is I didn't get written documentation of the "incident." How am I going to prove that my kid is so not normal when they don't send me documentation!?

I am GOING to the school tomorrow."


Let me note here that the post is partial sarcasm and total humor. Those 2 guys both really swear it's my fault, the counselor was  actually upset, I would love documentation of this because IT'S NORMAL!!!

So, let's move on to the comment...

"Wait - your schoolchild has seen Friday 13th? That's 18-rated for a reason.
Kids don't need to see this stuff because it comes out in their behaviour.
It's not the killing each other I have a problem with - all little boys do that - it's the serial killer reference point. If he was talking about Jason and the Argonauts, please forgive me."

Serial killer. hm. there's a thought. and here I always thought he would be an arsonist since he's also obsessed with fire... just like every one of his brothers before him. Oh, wait... and his uncle... his 2nd cousins... great uncles... shit, I wonder if that could possibly be normal, too?  No matter, let's move on to the question...

Yes. and not just "schoolchild"... my "7 year old" loves the movie. Also, as indicated in Jason the Hamster's name, Freddy. and anything zombies. Zombieland, Walking Dead, I don't even know what all he's watched because I can't watch them. Don't worry, he doesn't love all the classics, Michael Meyers is a douche.

He plays videos on youtube, one of his favorites is Jason and Freddy fighting and then Carrie comes and kills them both. Not that he knows who Carrie is yet, she's boring. His favorite video game is Black Ops 2: Nuke Town. (surprise: it's zombies)

I understand the worry, if this had been Walter, I would have freaked out and worried about his mental health. I would have been on the phone looking for some sort of therapy to fix my serial killer in the making. (not exaggerating. been there.) but Goofy is boy #5. We've been through this many, many times and I have learned it's normal...ish. especially when you only have older brothers who have older interests and an older brother with much younger interests.

Goofy has 3 teenage brothers and he has been watching "scary" movies with them for years. Not to mention, it's only been 13 days since Halloween but I do see his interests switching... last night, he was watching Minecraft with Christmas music. Even if his interests didn't alternate with the seasons, Jesus is always the ultimate hero because, in the words of my Goofy One, nothing is bigger, nothing is more powerful, and "nothing is scarier than Jesus." True story. Even demons tremble and beg for mercy at the sound of his voice.

Don't worry so much. Even if your child has strange and worrisome interests, you need to look at the whole picture before jumping to conclusions. Ask them.

Tuesday, November 12, 2013

Goofy's evaluation

Goofy's evaluation was wonderful, there was one part I just had to shake my head at- we were sitting in the room, talking, when my husband mentioned my Goofy One's tendency to fall out of chairs. She said that's common with ADHD (it is.) because she's heard of ADHD kids all the time that will just be sitting there, not even moving and next thing they know, they're in the floor. My husband told her that Alex does it too, just out of nowhere, *thump*. She said, yeah, that's probably the ADHD. I'm sorry, I had to laugh. It's common with ADHD (40-60%) and it's common with autism, but it's neither. It has it's own name under Sensory Processing Disorder- Proprioceptive Dysfunction. Proprioception is the ability to sense the position, location, orientation, and movement of the body and its parts. I'll leave it at that so I don't get sidetracked and move on to the evaluation.

I was so nervous, afraid that now that we have a chance to get an answer, the answer would be along the lines of woman, you're crazy. knock that shit off.

Yeah, crazy... LIKE A FOX! hahahaha.

ok, anyway, "crazy" as in "obsessive hoarder of all school papers" did come up but she was very nice about it. Said things like, "wow." (without the doubtful tone and the "um..." that usually follows it) and "very organized." (*snicker*, I'm sure she changed her mind about that once she dug into my binder) She made copies of some of the things I handed her and wanted to look through this year's work on the lunch break, so I'm excited about that. It's looking like she's actually willing to listen and look at everything. I asked her if her evaluation would fit the requirements of an independent evaluation for school. She said the SSD uses their evaluations all the time. Awesome news. I was wondering if, even though I would be getting personal answers, I would be wasting our time as far as getting him help at school.

We go up to the room for the interview that involves all of us and she's asking really great, really detailed questions and she's taking notes on everything. She mentioned a very good point that makes me feel better about Goofy's developmental milestones (sitting, rolling, etc..) I feel horrible because I can't remember any of it. I have no clue what happened when, all I know is that he talked early. She said, "well, did the pediatrician have any concerns? They should have asked at the check-ups what he was doing." Oh, duh! They would have! and there were no concerns. ever. He was a perfectly "normal" baby.

up until Kindergarten. Then she wanted to know what happened in Kindergarten the first time. Calamity. That's what happened the first time in Kindergarten.

Then we moved on to the 2nd kindergarten. all of the evaluations, the come back laters, the results- or lack of results... everything.

She wants to know about now. what my concerns are at home, what my concerns are with school. I remembered. I remembered everything. I divided the question into lists- social, developmental, behavioral, self care, and school. Making lists, I was able to tell her everything. In making the lists, in remembering why I'm looking for answers, I realized, no matter what the results of the evaluation are... I'm not crazy. I am looking at real issues and trying to find help. With my husband chiming in, both of us being on the same page for once, I'm seeing more clearly that I am seeing something. I don't know what it is, but I know it's there.

She gave me two more questionnaires to fill out. The first was a lot easier to fill out because it stated in the directions exactly what each circle meant (always- with no help or reminders, sometimes- partially without help or reminders, never- always needs reminders or help, etc...) and I have to wonder if I ever read the directions on the ones I've filled out in the past. damnit.

By lunch time she decided she would like to talk to the school. She asked me to sign a release giving her permission to talk to his teacher. I signed it. and then I asked for a copy.

She said she can't tell me I'm not crazy without scoring the tests and a lot goes into the scoring. She said she can't even say if there is a possibility of something without scoring the tests. It will take about 2-3 weeks to score them and write up the report, then she will call us in to discuss the results.

I'll still need to get a speech evaluation and an occupational therapy evaluation because she doesn't evaluate those but we are so close. I just know it.

When I got home, I was tired. so freaking tired. my brain was fried and I was ready for the day to be over.

But then...

Alex came home. and in Alex's backpack were the behavior reports from last year (top) and this year (bottom) that I've been waiting for...




(picture's not great, but you get the idea) and now I'm excited. I can't wait for this meeting, it's going to be GREAT! but, that is for another day.

Monday, November 11, 2013

Goofy's evaluation: pre-game jitters.

Today is Goofy's psychological evaluation.

I'm nervous because almost 3 years of searching has lead up to this moment. This evaluation. The FINAL answer. It will set the path for where we go from here.

I'm nervous because I have been a crazy woman these past 2 years- fighting and yelling and demanding and well, you've been here. you know. I've been insane.

...what if I'm wrong? No, he can't read very well. He's getting some words but not grade level. and yeah, he has trouble writing but what if that's just fine motor skills? What if his trouble is typical? not uncommon? What if his trouble is a lack of appropriate instruction instead of a disability? What if it's my fault? What if I'm looking for something where it doesn't exist?

I don't really believe any of that to be true but still, I'm nervous because... what if?

Either way, this isn't the end of the road, one thing is for sure- my baby can't read, writing isn't working for him. One way or another, school evaluations will go on.

Any prayers, nice thoughts, or good vibes today would be appreciated. If you want to pray that we don't walk away with a diagnosis of Munchausen Syndrome by Proxy, I'd be grateful ;)


Friday, November 8, 2013

The best 3 minutes of my week came from Walter's "broken" finger.

I was putting quite a bit of effort into doing absolutely nothing today until I got a phone call from the middle school. The nurse is pretty certain Walter broke his finger. I call the girl's parents and throw a hoody and some shoes over Alex's pajamas, toss some toys, fruit loops, and Ibuprofen in my purse and race to my poor, broken baby.

Sitting in the nurse's office, waiting for Walter to get back with his stuff, the nurse is gushing over how awesome Alex is. She asks where he goes to school, "Will he ever come here?" God, I hope not. Someday, I am going to remember that you really shouldn't say those things out loud. Judging by the looks on their faces, I'd better start explaining.

No, I do not ever want Alex back in the regular school. The school he's in has everything he needs. In the school he's in, he has access to the entire school. He's able to go to music, library, PE, recess, the cafeteria, he is able to do actual work in the classroom. Alex's school is a school made for him and kids like him. Back in the regular school, he would be completely set apart from his peers because he is unable to do the things they do, even on a modified curriculum.

Alex's staff is amazing. Every time I go in there, I see staff walking the halls with kids. I don't know who they are but I see the way they treat the kids and I like it. I sit in the office and I see kids come in with their staff and listen to them talk to the secretaries.

I see the morning rituals of parents handing their kids over to staff, I see the principal running to help parents be ok with leaving their upset children in the hands of his staff, reassuring them that their child will be ok and if they're not, they will call them. I see him working so hard to try to do everything he can to put us at ease, to work with us, to take our concerns into consideration and then do something about it.

I see the assistant principal- the old one discussing Pinterest with me to help me relax before an IEP meeting, the new one doing everything he can to help us walk down the hall and not one single person there judging any of us. Not our parenting, not our kids.

Walking to and from my car, I can see the kids on the playground. Just a bunch of kids running wild together in a safe place.

In the support group, I hear what the other parents have to say, and the other parents love this school as much as I do.

Alex's school is just a regular school with exceptional staff, a school that has been modified to fit him.

The other nurse said, "I've heard that school was a good one." It is. She said, "I heard other parents say that if you have a chance to get your child in there, you'd better take it." You should. Alex's school is a good school. I don't ever want to leave there.

and, no, Walter's finger isn't broken. They think he dislocated it and then it popped back in on it's own. He's going to be hurting this weekend, though. Sad for him, but I feel good. :)

Thursday, November 7, 2013

Alex's IEP meeting

The day before the IEP meeting, I just couldn't find a care about anything- not even the fact that we lost our cat. Completely apathetic. I prayed for help... and I got it. Just not the way I wanted. The day of the IEP started wonderfully :/ I went to bed at a decent time so I could be fully rested. Then I had a dream...

Natalie, skip it. Serious.

Alex had impetigo. As much as I doctored it, it just kept spreading and spreading until it covered his whole body and he turned into a zombie. Now, you know zombies aren't safe friends to keep around, but this is my baby. I need him to be ok as a zombie before he runs off to do zombie things. I kept him in the back yard until the other kids wanted to go out, then I walked him to the front yard so the other kids could be safe and to see if he was ready to wander off with the other zombies. He hasn't figured out yet that he eats people and I'm kind of worried about that because how will he survive as a zombie if he doesn't know how to eat? about the 3rd or 4th yard trade between Alex and the other kids, he started wandering along the fence, exploring things. This must be a good sign, right? I'm wondering if he's almost ready, thinking the wandering must be a good sign, when he yanks the cat off the fence and blood and gore and the horrific cries of the cat slam me out of dreamland and into panic. at that moment, I was done sleeping. DONE. I didn't want anymore. Unfortunately, it was 12:28am so being DONE wasn't an option.

This morning, anxiety is still high. so high.

Driving to Alex's school, I'm considering things like... if they keep the full 60 minutes of OT, are they still going to add consult minutes? If they don't add consult minutes and we added 2 new goals for OT, how is he going to work on bilateral integration in the classroom? should we trade one of the new goals back to bilateral integration? because I'm not willing to give that up.

Bilateral integration is important for a lot of things. Using an ipad, feeding himself, dressing himself... which is the #1 reason I made my own goals to keep working on his bilateral skills. I want him to be able to dress himself. He's already mastered moving his limbs to aide in dressing, he's almost conquered pulling his pants up, he totally rocks taking his clothes off, but the next step is to use both hands together to put socks and other clothing items on. They said we can't do those because they don't fit in with the school day. Goals have to fit with the school day. Now, the bilateral integration goals fit with the school day- carrying his tray, zipping his backpack... things like that. I need bilateral integration. I don't care how they work on it, but I need that skill and I need OT to work on it because it's important. This is one of my very few lines in the sand.

I'm not really nervous about this meeting because we've already discussed everything, now we just need to make the plan. I am nervous about seeing the person who still wants to talk about the things I said but that takes a back seat to how to keep 60 minutes (my line in the sand for OT and speech) and get 15 minutes of consult time for OT. I'm desperate enough for this that the plan I came up with was to take the extra 30 minutes of speech and split it between OT and ST for consult minutes.

Alex doesn't really need the extra 30 he has for speech. Nice, but not necessary. If I remember correctly, there should be no documented need for those 30. It started in 1st grade, the regular school messed up big time that year. In one meeting, where I was letting them know how they messed up, by the time I got to the speech therapist, no one in the room was happy and the assistant principal was in shock. That's when she had to admit that she had been following the ESY schedule instead of giving him his full 60 minutes, to fix it, she doubled his time to 120 minutes/week. That was eventually brought back down to 90 but I cannot remember an evaluation resulting in a need for more than 60 minutes. 60 is my line and I am willing to trade.

but trading is not necessary. Consult minutes do not come out of anyone's minutes. They don't have to be found or traded. Now I don't know what to offer. I don't know what leverage I have to make a deal.

 "The only deal you'll find, I'll gladly take your soul."   -Avenged Sevenfold. ;)

I breathe and have faith that we'll figure it out.

Before the meeting, I was able to talk to Alex's teacher. There is no IEP signing. This is bad news for me because if there is no IEP signing, there is no place to note attachments. She said if I disagree with the IEP, I just send it in as an attachment, we have another meeting and then it goes to due process. This also isn't good because I fell for that last year. The regular school "lost" my entire packet that was the formal written request for evaluation- including Goofy's private evaluation, my request for prior written notice, and my request to inspect and review all educational records with respect to the identification, evaluation, and educational placement and the provision of FAPE for my child before any meeting- until the day of the eligibility meeting. and I'm supposed to trust that they wouldn't "lose" a parent attachment? Yeah, that's so going to happen.  and I need to figure out a way they can't "lose" the new formal written request for evaluation. I still have a few days to figure it out and today is about Alex.

This meeting was great. perfect. Alex's teacher printed up an extra copy of what she was reading so I could follow along. I also had the ones she sent me ahead of time that were already marked where I needed to pay attention to make sure my concerns were addressed. Unfortunately, I didn't make a list of concerns. All of my concerns are already in the IEP because I had an active role in making it. I should have probably written a summary of what we talked about. I'll remember that for next time.

The good news is, I think we changed something in OT's goals to bilateral integration for self care. She said they could totally work on socks and putting pants on. Alex takes his socks off all day long. Ok, I have no clue what all is changing but it's all stuff that I like and the teacher said she'd send me a new copy to look at before the next meeting so I'll really know what we're doing.

ABA- I love ABA. She's looking at his behaviors. His Behavior Intervention Plan is still accurate, no need to reevaluate. His behaviors are great, it reflects the classroom support or something like that, which, no. it doesn't. It's not the classroom whatever, it's the staff. She's going to send me a copy of last year's chart as well as this year's chart to talk to the principal about because the supports have always been the same. The difference is staff change. The difference is the difference one person can make. I need that one person again next year. whether it's Aide 1 or Aide 2 or the teacher, I need one person to stay the same and here is the proof in charts that it works.

Music therapy was the hiccup. Not that I care about music therapy, but I care about being a hypocrite or holding staff to different standards. There was a thing earlier in the week... I always tell you to ask nicely the first time. well, I did. and then it went beyond the first time into ugly places that aren't fun to go into. I was upset about prior written notice and what exactly prior written notice is. I am entitled to prior written notice within a reasonable amount of time before the school proposes to initiate or to change the identification, evaluation, and educational placement and the provision of FAPE (including related services. which, I haven't figured out if therapies are a related service or if they are special education in Missouri because if they are spec ed, Goofy qualified for an IEP last year based on the OT eval). IDEA and the procedural safeguards specify what should be included in prior written notice. Without prior written notice or any warning, she proposed to cut music therapy to no direct minutes and keep the 60 consult. The reasoning was good- the progress levels were significantly higher in the classroom and other therapies than they were in music therapy. I agree that cutting music therapy, based on the collected data, is a good move. But. I should have gotten prior written notice. that pisses me off. and since there was no one there who would be useful in this, temper tantruming would have been pointless.

Which really upset the OT. not that she said so, she wanted to, but she didn't. She started to say that my quick agreement based on the data and conversation is the reason she likes to discuss this in person but that's not it. Whether the music therapist had been there or not, even if I had cared if he had music therapy, looking at the data, I would have agreed to cutting it. I need the information. Without the information, I cannot make an informed decision. Still to this day, I have not seen any data that would suggest converting OT time from direct to consult would be beneficial for Alex. Show me the data and we'll talk. Until then, I have a whole list of goals we can work on once he makes sufficient progress on these 2.

All in all, it was a good meeting. A lot better than I expected.

Next up, Goofy's Psychological Evaluation.


Monday, November 4, 2013

Life Altering Sameness

Life is good.

Life is good.

Life is good.

That's my new mantra. For the past week or so, my mantra has been a count down to Monday. 5 more days. 5 more days...

Change is coming Monday... 4 more days. 4 more days...

After Monday, things will be easier... 3 more days. 3 more days...

After Monday, I will have time... 2 more days. 2 more days...

Monday is going to be life altering... 1 more day...



Monday came...

and Monday went...

and nothing changed.



I looked at my husband,

my husband looked at me.

I glared at my husband and started lining up alibis. He swore he had nothing to do with it. Or, well, not much...



Hang my head, breath a sigh, and put my big girl panties on. I can do this. Just a little bit longer.

We finish the Goofy One's homework and mark off our visual schedules chore by chore, task by task.
"Did you eat supper?"
Goofy: yes.
Girl: solemn look and a vigorous nod.
"Did you put your dish in the sink?"
Goofy: Yes.
Me: *raised eyebrow*
Goofy: OH! *runs off to do it*
Girl: solemn look and a vigorous nod.
Me: *raised eyebrow and a glance at the table*
Girl: *looks at the table* OH! *runs off to do it*
Little moments.

It's bed time. baths have been had, teeth have been brushed, all little creatures smelling of shampoo and lavender, Alex is arguing with me over bedtime again, "No wan' to. No wan' to." Little moments.

The Goofy Child and the Girl engaging in a shushing fight that looks like it may turn bloody without intervention when I flip off the lamp and settle in for a long wait. The Girl rolls over and hugs my hip, "Mawmaw?" Yes! Mawmaw! "Yes, Mawmaw's here. Go to sleep." Little moments that tell me Life Is Good.

The little moments are life altering.

Saturday, November 2, 2013

Rage Against The Wrong School.

I don't think I was too clear in the last post about where my rage is directed.

Alex's school makes mistakes. I rage. They work with me. We're good. (at least, from my point of view. I'm not sure if they get over it as quickly. one person still wants to talk. not looking forward to that, but 'own your actions,' right?) My tendency to lash out when they step over my invisible lines doesn't come from their actions, alone. Unfortunately for them, they are suffering the backlash that comes from the regular school.

Alex's OT is perfectly willing to work with me. Once I stated clearly why I was offended and asserted my need to be involved in the process and my need to have real information, she was more than willing to really talk to me.

I guess I can't blame them for their assumption that I, as the parent, would be ok with sketchy details and minimal information because I'm starting to learn that a lot of parents aren't demanding details, and not just on the IEPs. They are so busy with their lives, so trusting of the schools to do what's right, that they don't want to be involved or don't know how to do it. Yes, I know that's a blanket statement and not true for everyone but all these years that I couldn't do it, plus what I'm seeing in the schools now that I actually have a chance to show up leads me to believe it's true for more than some. Everyone has their reasons, and I'm not saying they're wrong.

Alex's IEP meeting is November 7th. Goofy's Psychological Evaluation is November 11th.

After Goofy's Psychological Evaluation, I have to request evaluation for SSD services. again.

Goofy's school psychologist is driving me mad.

Every time I see him, he's all, do you need the procedural safeguards? and then he's pushy about it and looking at me like I'm insane when I tell him I don't need them, like he's trying to tell me something, you know? I don't need a copy of the procedural safeguards because, aside from the copy I just gave Alex's principal, I have 3 more sitting right here on my desk. Two of them are well used, highlighted, sticky noted copies of our rights. ...but what is he wanting me to see? What am I missing?

I go through and I read, I mark, I google, I print up articles, I make notes, and I get MAD.

I've read the procedural safeguards every year since I received my first copy when Alex was 3 years old but I never understood them until Google, Wrightslaw, nichcy. Knowing your rights and understanding your rights are 2 different things. I'm still learning and the more I find, the angrier I get. So angry until I get so tired. beat down, outnumbered, worn out. Fighting a fight that I can't win.

Now I have a new question to find the answer to. Alex's IEP won't need a parent attachment because we made new goals and we will figure out at the meeting how to get consult minutes, hopefully without taking any direct minutes. She can have the social worker's 15 minutes per week if time is an issue. What does Alex need with a social worker right now? But Goofy's will.

If IDEA does not require a parent's signature on the IEP, and I can't figure out for sure if Missouri does, how can I take the IEP home to look over it and see if I need to ask for something or write a parent attachment? Where do I make a notation about a parent attachment so they can't just throw it in the trash? How can I note my objections?

Funny, Alex has his own advocate provided by the state- just a phone call away- for free and I don't need them, while Goofy desperately needs one but doesn't have autism so doesn't qualify for Alex's services.

Friday, November 1, 2013

*freight train*

Remember the other day when I said, "With Alex's school, I haven't even tried fighting because I don't need to."? Yeah, well, eventually, I'll learn to keep my freakin' mouth shut and stop tempting fate to mess with me.

It started Wednesday afternoon. I got an e-mail from Alex's OT with some disturbing news that sent me into panic mode. She wants to change some of his direct minutes to consult minutes and then she didn't respond to my panicked e-mail asking wtf she was talking about. I spent all afternoon terrified that the answer I would get is that Alex isn't making enough progress to warrant continuing OT (which I have heard of happening from other parents these past few weeks) and I didn't know how to fight it. All I could do was hold back my tears and pray to God that they weren't giving up on my baby, that they didn't see him as a lost cause. I started mentally cataloging all the many, many ways he's made progress over the years with OT. Not leaps and bounds, but progress. Hopefully enough to keep OT.

until my heartache turned into fury.

The paper that was sent home was NOT prior written notice, which turns out to be not what I needed anyway. The Notice of Meeting, or the invitation, must tell parents:
  • the purpose, time, and location of the meeting
  • who will be at the meeting
  • that parents and public agencies have the right to invite other people with knowledge or special expertise about the child, including related services personnel as appropriate, and that the party inviting the individual makes the determination that the invitee possesses the requisite knowledge or special expertise regarding the child
  • that the parents may request that the Part C service coordinator or other representatives of the Part C system be invited to attend the initial IEP meeting for a child previously served under Part C of the Act in accordance with §300.321(f).
because knowing each of these elements in advance of the meeting gives parents the opportunity to prepare and more fully participate in meeting discussions and decisions.

Instead, what I got was pure ridiculousness.

I'm furious. They tell us that what they are offering is the real deal, act like it's a back alley kind of favor and we should be grateful that they are even offering this much out of the goodness of their hearts, but instead, we are being ripped off. What they are selling is nothing more than a cheap imitation at full price. How can we be expected to sit back and be patronized when they tell us how important it is for us to be involved in our children's educations, what a vital part of the educational equation we are, how we are valued as important members of our children's team while we know they sit back and laugh at how we fell for it every. single. time?



"You held me down, but I got up
Already brushing off the dust
You hear my voice, you hear that sound
Like thunder gonna shake your ground
You held me down, but I got up
Get ready cause I’ve had enough
I see it all, I see it now"

I know my rights and I'm not falling for this shit again.

I'm going to fight this. The first thing I did was go back to the post McClain Special Needs Advocacy posted on my page about a Parent Attachment to the IEP. I Googled for more information and sat back to consider how to go about it. I remember reading on her page that when you do the parent attachment, you need to make a notation beside your signature on the IEP.

Now, this is a conundrum. I still haven't figured out exactly where you sign the IEP. Last year, I was determined not to sign it. I was going to wait and have a chance to read it over and THEN I would sign it. That never happened because there was no signing anything. ever.

except...

mother... you have got to be kidding me!!!

They wouldn't.

The only thing I have ever been asked to sign is the attendance sheet before the meeting.

"Oh, it's nothing," they said. "It just states that you were here for the meeting," they said.

So I asked around to some of my local parents... same thing. several different schools. No IEP signing. Just attendance. "Huh," they say, "that's odd. We've never had to sign an IEP."

So, I ask my good friend Google. and yup, They did:

The cover page records the name and address of the family, the purpose of the IEP meeting, and the people in attendance. Often when the cover sheet is presented:
  • IEP team members are introduced. Each person's relationship to the student should be explained. Parents and legal guardians are introduced as participating members of the IEP team.
  • The purpose of the IEP meeting is explained. For example, the meeting's purpose might be an initial IEP, an addendum to the IEP (e.g., parents or educators may want to add services or other changes), an annual IEP, or a transitional IEP (e.g., for students age 14 or 16).
  • Parents or legal guardians sign the cover sheet at the end of the IEP meeting. This signature determines if they AGREE or DISAGREE with the contents of the IEP.

sneaky bastards.

Now, I am really pissed. I feel violated. How many times am I going to find out I have been lied to? How many different ways are they going to take our rights and crush them right along with every dream we ever had of being a true part of the team? Vacant hopes of them just accepting us as partners of equal standing without having to fight and push and force our way in? Of being heard without having to scream and yell and demand to grab their attention long enough to be heard?

 
 
"I walk the fields through the fire,
Taking steps until I found solid ground
Followed dreams reaching higher
Couldn't survive the fall
Much has changed since the last time
And I feel a little less certain now
You know I jumped at the first sign
Tell me only if it's real"

My heart has been ripped out, my grudgingly offered tiny nugget of trust thrown back in my face, my faith in my team's willingness to do what is right for my son has been mocked... I'm wondering if they are pretending ignorance just to be able to fuck with me, guaranteeing I have no weapons to fight with and guaranteeing they get their way, or if they really don't know what our rights are (I don't even know which one would be worse) while the violation of our rights is glossed over and ignored, waved off as insignificant... and I need to watch my mouth.

At least they heard me.