Tears

I started crying today… while speaking to a friend who knows about my life and my kids but doesn’t REALLY know because, well, you know.. its not her life. I started to cry. I started to cry because she said to me, “Do you realize,          you have a case.”

I didn’t want a case. 

I didn’t want it to come to a case. 

I just want people to do the right thing. 

Why is it so hard for people to just do the right thing?

I am going to call the woman she asked me to call, not because “I have a case” but because the woman she wants me to call, she lives a life like mine. She will understand the terms when I say them. She will know what I mean by the words “I don’t want a case.” She will talk to me about her experiences at one of the schools that is being offered to my child. She will listen and understand. 

If and when all of that is over, and I want or need to do more, that contact can help me there as well. She has sued the district several times and won. She is a lawyer. She helps people all the time. She can help me. 

If I may have just been given the saving grace of God for my son, why do I feel so unbelievably afraid?

 

~me

Why is it so hard?

Why does it all have to be so hard? 

I am pretty frustrated at the moment. I think I’m upset because up until now, we’ve actually had it pretty easy. We have gotten what we needed for our son with some elbow grease but not needing advocates, and lawyers, and what not, you hear so many people complaining about in the Special Education community. 

I am not saying we have not had to hold our ground and not let the school district push us around, but for the most part, when we showed muscle, they backed down. 

My lil man, well he is now transitioning to middle school. He is almost done with the 5th grade and we are trying to work with his IEP team to find the right fit for him next year. This time however, we are dealing with ego’s and agenda’s that have nothing to do with our son. His current SDC teacher has been pushing the district to create a program for kids with behavior issues in the middle school (and possibly high school environment) for 3 years now. What an admirable thing in my opinion. I think there SHOULD be a program like his in the middle and high schools. Absolutely. I just don’t think my kid should be in it, and especially because it will be at that school. Yes, I said “that school.” I have heard horror stories about how the student body treats kids with special needs, and how the administration doesn’t really do anything about it. It is a culture at some schools, to treat Special Education students with lack of empathy and no respect, and thus, the fight. 

I think this program my son is in now, the one they want to start in the middle school, has done wonders for him. I also feel like it has possibly restricted him in some ways the past couple of years. However, because I can not clone my child and run him through both paths at one time to see which one is best, I have to trust my gut. 

The current program was a pilot program. My son has been in it for several years. Five to be exact. First through now 5th grade. The program has adapted and changed along the way. However, at some point we feel it has failed our son. I can’t tell you the exact moment it happened. I don’t think it happened intentionally. I surely, don’t think it happened with malicious intent. I do not blame the teacher or administration for the fact that it happened. However, I am a realist and I can not ignore the fact THAT IT HAPPENED. Somewhere along the line in this pilot program, my son missed his window to seperate himself from the group of kids. They all came into the program together, they are all giving the same guidelines, homework, and treated the same… Somehow.. his IEP turned into a GEP (GROUP education plan). ONE out of the 5 of them moved to full time mainstream only,  ONE. There was a moment when our son could have been moved, we asked that he be moved, they chose NOT to move him. We didn’t fight it, we should have fought harder. We didn’t. 

So now, here we are. 

At a point where I have never been more perplexed about what to do in my life. 

I do not know WHAT to do. Literally. I am frozen. I am frozen in fear, I am frozen in worry. I am frozen in self-doubt. I am frozen in blame, and shame. I am frozen in every single possible emotion that is available to me for I feel as though my child’s ENTIRE future is riding on this ONE decision: What program is best for Steve, at which school and at what level of engagement. 

There are times when I just want to explode. Like literally, internally com-bust, the pressure is so much. Pressure from so many sources. My kid, even though he has no clue he is doing it, pressures me into doing what is best for him since he can’t do that himself. My ex-husband, again unknowingly, puts pressure on me to do all the research and to “know everything” and inform him as to what is the best path. My ex-in-laws and the family…. I can’t even get STARTED on how much pressure they put on me.  My own family who literally has NO CLUE about what I am even going through raising my two kids with ADHD (and my son who also has autism). The pressure from the school and the IEP team who only shares PART of the information with me, then expects me to make corrections and additions. None of this even compares to the amount of pressure I put on myself. 

I just do not see why it all has to be so hard.

There is a child, who is named Steve, who has learning disabilities, several of them. Steve needs help with his education. Period. Why is it so hard to find what is best for Steve?

It all seems so simple to me, so why do we all have to make it so damned hard. Well you see now, his teacher , who is the leader of his IEP team, wants him to continue in HIS behavior program because that’s how he positioned it to the district, THESE KIDS, need this program, they are all moving on to middle school and will not survive without it. And while yes, my son DOES have some behavioral issues, they are now 90% or more concentrated in the area of academic unpreparedness (remember i mentioned ego’s and agenda’s, yeah that!). Steve no longer, rolls on the floor and can’t sit still and listen to the teacher. He does listen for the most part, at least that’s what his daily behavior report is telling me. He now has a harder time staying engaged and focused in class and getting his ideas in his head out onto paper. The “behaviors” have come to virtually none in a day, or even several weeks. So I am not seeing how a behavior program is suited for him anymore (especially when said Behavior program, is at a school that does not take seriously the treatment of its Special Education members, as I’ve been told by MULTIPLE people). 

Would this program be a better option if it were located in the ONE middle school in the district that has the BEST handle on special education I have ever seen (I’m not kidding, EVER SEEN!). Absolutely, however… isn’t there always a “however,” – that school already has a Special Education program for Autism. 

So I look into THAT program since my son also has an autism diagnosis. 

Only problem, that school wants and needs the recommendation of his IEP team for the program. The IEP team who told me, they didn’t even know a single thing about that program in the district and who are pushing their OWN new program and who basically told us that if we opt not to put our son in this new program, that his life will be completely ruined and he may even get kicked out of school because that is what has happened to some of the other kids they’ve seen. Yeah, THAT IEP team. You think THEY will make the right choices for my son? (ok I’m taking a breath now… breathing innnnnn breathing ouuuuuuuuuuut… sorry about that! I digress). 

Ohhhhhh… But wait… I thought WE were “members” of the IEP team? Do “We” not get a VOTE on this? And As his parents, shouldn’t our vote count MORE than your vote? It is just so darned frustrating. 

Why does it have to be so hard and complicated?

 

~me 

 

The IEP Prayer

We all do it right, the IEP prayer the night, week, month leading up to an IEP. You know the one, “Dear Lord, please open the teams mind, heart and soul in order to do the best they can for MY child.”

Wait… am I the only one? Can’t be. Please tell me I am not alone here. 

Anyway, here I am again… praying. This one… though… honestly… I’ve never prayed harder. 

This IEP, on Thursday, this one… it is a transitional IEP. Steve is winding down his time in elementary school and is about to head off to middle school. WOW, that’s scary. It is scary not just because the time has flown unbelievably fast bye my eyes, but scary because Brooklyn’s been in middle school now for two years and I feel as though I have a pretty good grasp on what life is like there. To be honest, that scares the CRAP outta me for Steve. 

Generally, Steve needs low levels of support. He can dress himself, he can use the restroom on his own, can get his own lunch from the shelter while at school, and so on. However, when it comes to his academics, well this is where his need for support lies. I’ve seen the work load handed to 6th graders out of the gate and I’ve seen Steve’s current work product sent home. Steve still needs support a lot of it, but not in the ways many others need support. Steve is an individual…. I guess this is why they are called Individual Education Plans.  So, lets be honest, it all starts with his executive functioning skills, or lack there of. So that’s what sent me off on my latest IEP prep spiral, how do I help him with his deficits with executive functioning.  

What’s that? Com’mon first you don’t know the prayers and now you don’t know the spiral? I can NOT be the only one this is happening to, Honestly, TRUTHFULLY… hello… Bueller.. Bueller… Is this thing on?

Well yes… It is true… for this IEP the usual spiral turned into the DEATH SPIRAL, but….ok so, well,  I ended up spending well over 150 hours researching, learning, figuring out, and taunting myself with the most amazing information I could find. This time, one thing seemed to lead to another. More great information after more great information. I stumbled on the holy grail of missing puzzle pieces, I met other mom’s in other parts of the country who have legal support on speed dial. Man oh Man I was gonna get this one RIGHT! Mama here was a dog… with a bone. Nothing you are gonna do can stop me. I am going to be the best, most informed parent at this IEP meeting that you have ever seen! (Really, you still don’t recognize the spiral?… Fine!)

It helped, it really did. I did learn a lot of new things, like how to write better IEP goals. I look back at my son’s previous IEP’s now and cringe. I wonder, how did I think this was okay. How did I think this was going to help him? It really is remarkable. How once you know more you DO more. How once you see something you can never “unsee” it ever again. This is how I feel about my son Steve’s previous IEP’s. I see the mistakes now, clearer than EVER.  

I know, don’t beat yourself up “mom, ” you didn’t know. 

That leads me to this… the BIGGEST thing I learned through this years IEP prep… you know all those people you thought were the experts and were going to lead you out of the darkness and we’re going to solve all your child’s academic problems he has….. you know… THE TEAM….. what I learned is THEY DON’T KNOW SHIT! Yes, I said it, and I mean it. I am not saying however that the fact I just stated, is their fault. 

I believe that every Special Education Teacher out there wants the best for their kiddos. I know that to be true. What I do not believe is that the districts feel the same way. I believe, the government (federal, state and local) feel educating “those kids” is costly. Especially those “autistic ones” with all the different problem. If they are all “snowflakes” and we have to treat them all individually, that’s going to get expensive, quick.  On top of that they can’t put our kiddos in an “autism classroom” and just have a new way of “dealing with them.” It is not how this works. So therefore, it becomes messy, complicated and expensive. In addition to that, I sure do not see the SpEd teachers be able to go back to class, learn about the newest disabilities emerging and how best to tackle the issues associated with them. THIS IS FALLING UPON US PARENTS TO DO… and this is why I am acknowledging here and now… the “team” is not your child’s savior… YOU ARE… I AM! Hence the 150+ hours of research, reading, educating MYSELF, first. 

I’ve taken the reigns. I am going to walk into that IEP this time like a boss, because, I am. You’ve heard it a thousand times, I had heard it a thousand times, “no one advocates for your child more than YOU”… I guess I never knew what that meant until now. Now I know, now I see, and I can never UNSEE again.

How am I going to do that, advocate better, you may be wondering. Well for starters, I am going to pray (you knew I’d get back there at some point I hope). Truly, I am going to pray. I am going to pray that the “team” opens their hearts, their minds, their wallets, and their spirit to do what is in the best interest for my child even if it is HARD, EXPENSIVE, and has NEVER BEEN DONE BEFORE.  I am going to ask for what I truly want for my child, what I as his mother, his advocate, KNOWS will be helpful and supportive in his academics so that he can be successful. I am no longer going to allow them to paraphrase my parental concerns. I am going to hand then a typed up page of EXACTLY what my concerns are for my child especially with regards to his academics and I am going to ask that these concerns be entered into the record verbatim this time so that our REAL concerns are documented. I am going to ask for goals that are academic based and have supports built in. I am going to ask for a LOT of accommodations knowing that some may be handled in other areas or ways, but what I have learned is, if it is not written down they do not haveto do it. So, write it down and when we feel he no longer needs that support (to get to PE and get changed in a specific allotted amount of time, for example) then the accommodation can be removed. I am going to speak to my child, his father, and together we as a family will create a VISION for his future, we are going to ask the team to join us in making this vision a reality. I am going to ask questions, LOTS of questions. For example, if my son is in a behavioral program at school why is there no BIP in place? A Behavioral Intervention Plan is not written out for a child in a behavior program is kin to saying oh we know this kid is allergic to peanuts but I was out that day and a sub cook from the other kitchen filled in. PUT IT IN WRITING. 

The DEATH SPIRAL has to have been for something, it was. I have learned so much. I have read so much. I have watched so many YouTube videos, I have written so many notes that my hands are very confused and thought they forgot they had to know how to do that; you know, hold a pen. After all of that spiraling,  I fall face first into the dirt from exhaustion and can learn no more for this round, I create the bullet pointed notes to take into the meeting, it is then I realize….. I’ve come full circle. 

It all comes back to, my child has major executive functioning deficits that keep him from his full learning potential and now I need the team to build the bridge to success for him. 

So… here I go again… 3 days until the IEP…. I’m starting the prayer again… Dear Lord… please help the IEP team open their hearts, minds, wallets and souls  in order to do the best they can for my child. 

Say it with me, will you?

~me

 

 

 

Bigger Life Teaching Moments

So…. I have to tell you about the conversation about politics Steve and I got into this morning in the car. it started when he started calling the presidential candidate DT names, I think it was something like… he’s a stupid asshole who makes fun of people.  WOW… Umm…. Lets talk about this buddy!

It gave us a chance to have a discussion about how being kind to people is important even if they do not see things the same way we do, or would like them to. BIGGER LIFE TEACHING MOMENT, I kept telling myself while breathing deep cleansing breaths.

During the conversation, it twisted and turned as it often does with someone on the spectrum and we got onto the topic about race… I said to Steve… you DO know that there are people out there who do not like other people simply because they are black, right? His answer: No mommy, that was a LONG time ago. That’s over.

God Bless him… but yeah NO BUD, that’s still happening today.

Then I told him… there are people who absolutely will NOT vote for Hillary simply because she is a WOMAN.

MOM, now you are just LYING.

Then I said… there are police officers shooting black people,  there are black people shooting police officers, there are terrorists from other countries killing Americans and there are American’s hurting people here and in other countries just because they can’t see life from the other’s perspective.

WHOOOOOAAAAA mom… you just gotta stop. JUST STOP MOM. JUST STOP!

**mind**blown**  

Then I reminded him just before he got out of the car… just remember bug, KINDNESS COSTS NOTHING… be kind to everyone including those who disagree with you. Kindness costs nothing. I will say these three words until I am blue in the face… KINDNESS…. COSTS… NOTHING!

Now, I sit… and wonder…….. how long before I get an email from a teacher about the lessons HE taught everyone at school today.

Just now, I checked the behavior tracking app….  it is 2:34 and he has 100% at school today.

Empathy

Last night my son and I decided we should go spend some time with his puppy at his dad’s house. The puppy had been home most of the day alone for a multitude of reasons that don’t matter to the story. So off Steve and I went for yet another meal out this week to have dinner with the pup. 

The pup while playing outside must have either eaten or got bit be a bee and she started swelling up. While I was starting to kind of freak out a bit realizing that I am going to have to 1) find an emergency vet 2) take Steve with me and 3) his Dad has no chance in hell of helping in anyway since he is at the UCLA game with our daughter. 

At first Steve had trouble helping me. The puppy DID look “creepy weird” as he said. She did. Period. But I guess my sense of urgency got through and he snapped into “do what mom needs mode.” Did he go anywhere near the dog, no. Was I able to rant out commands and have him follow along, yes! 

Steve, put on your shoes. Steve, grab my purse. Steve, lock the door. Steve, unlock the car. Steve, buckle up and hold her tight. 

Once at the doctor he leans over and kisses his puppy as they are about to take her back. “I love you puppy,” he says. 

While waiting, he realizes the UCLA game is on the TV. He connects. He knows his dad is THERE. He knows he can’t be here, if he is THERE. He calms more staring at the screen. 

When he asks if he can use my phone to play, I had to say no. Something I NEVER would have even thought of doing even a year ago in a situation such as this. My battery was at 23 % I needed to save it for the moment I could reach his dad. I said No. He said ok,turned and stared at the game on TV. 

Another dog soon came out and was slowly meandering his way around the waiting room. A pug who may as well had been a baby pig, so short compact and round. Steve starts to run over. About to stop him, Steve stopped himself and looked up at the owner and said, “I am sure he is sick or he wouldn’t be here, would it be ok if I pet him?” Wait… Whaaaaaaaat? Is that…. EMPATHY????

Steve sat and played with the dog, Pumpkin. Never taking my eyes off him standing over him for the split second thought of a mean move… Steve just kindly, gently rubbed Pumpkins back. Then I hear Steve, so why is he here? Our dog, well my dog and my sisters dog, this is my mom but she doesn’t live at dads house anymore so it’s really OUR dog but mom helps out with her sometimes….. I just dropped into the chair, yep….that’s my Steve. 

In came another dog after Pumpkins departure and again I hear, I know he’s not well or he wouldn’t be here do you know why MY dog is here….and another, and another and another. 

We were there for a couple of hours time and  time again, Steve floored me.  Always supportive to the animal. Always kind to the owner, asking permission before petting. Always wondering and asking if his puppy is okay. 

So… Whoever says autistic people have no empathy… They can kiss my ass!!!

My little man was one of the kindest most empathetic and supportive people in the world last night, especially to his incredibly scared mother. 

~me

I am PUSHY

Yesterday a break down happened at Steve’s daycare. Well, was it REALLY yesterday or has it been going on non-stop since he was 6 years old and I just found the time and the strength, knowledge and vocabulary to discuss it? 

We have worked very hard with Steve over the years. Pushing him to do things he didn’t want to do. Pushing him to do things he didn’t think he would like to do. Pushing him out of his comfort zone… time and time again. Everything from trying to use a cup instead of a bottle to playing soccer among his peers. You name it, we’ve tried it. 

IT IS NOT ALWAYS RAINBOWS AND UNICORNS PEOPLE. 

But we try. 

You see, we try these things to prepare Steve for the real world. Like it or not, I will not always be here for him. I can’t tell the future so as I do with my neurotypical child, I prepare him the best I can to be the best that HE can be. Do I know what that looks like? No. Do I know what occupation he will be attempting? No. Do I care? NO!  So… I push. 

I AM PUSHY.

So… clearly you say, there must be a point to this. Yes. I have pushed my kid to be inclusive. To NOT stay in the shadows. To not play alone under the bleachers by my feet but to play in the park where all the other kids are. To get out there and run on the soccer field with his peers, even if he isn’t always in the exact right position all the time. To be a PART of society. To find that there is something out there bigger than just ourselves. Join in, and most importantly, do not be afraid to try new things. Sometimes it works out (the California Screaming Roller Coaster at California Adventure park in California)  and some times it may not (taking a bite of calamari – I get it bud… I think its nasty too). 

So yesterday while in daycare, the daycare woman said to Steve, “look, sometimes when people see other people struggling they like to kick them harder. It a bummer, so just come in with a smile on your face and just go off to be alone if you need to, but never let them see you upset,” I LOST IT. 

I’m sorry, I said… did you just tell him to exclude himself from the rest of the daycare? How about you instead talk to the rest of your class, how about you talk to them about not making fun of people who are different than them. How about you talk to them about INCLUSIVENESS instead of expecting my son to just “deal” with being excluded. How about you teach them that KINDNESS COSTS NOTHING but being rude to a classmate because he may have more sensitivities than you is wrong.  Yes Steve, we can go HOME now. 

8 months… we have 8 months left with this provider before Steve moves up to middle school (which in and of itself is already about to kill me). 

INCLUSIVENESS!

Please teach inclusiveness – whether it be the color of your skin, your neurobiology, your love for one kind of person for another, your hair color, or height for example. 

 

KINDNESS COSTS NOTHING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

~me

IEP vs 504

I’ve had quite a few people ask me what the difference is between a 504 and an IEP is.  I know that before a 504 was graciously given to my son, I had never heard of one. I also know that had he not been given one, we may not be where we are today. 

So, when this came across my Facebook feed today I HAD to share it!!! 

I think this is a good outline to begin learning, please also note, I have been told, PE is an academic class and may be addresses on both of these. 

Happy reading!

IEP vs Section 504 Plans Infographic

~me