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

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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 Almost Teen Girl And Her Issues

fiji

(Photo is of a Cabana I wish I was in, right now, in Fiji with my cabana boy Matthew sipping Pina-Colada’s)

I don’t know why I have such a hard time with my girl. Maybe I am just supposed to be having a hard time with my girl. She is after all, about to turn 13. I’ve heard this is when it is supposed to start. But is it? Is it just now starting?

I feel like Brooklyn and I have been at odds since she was born, like LITERALLY. I have been blessed with overly large breasts and my whole life I said, “Well, at least I’m made for breast feeding!” Out came Brooklyn and guess what… she wouldn’t, couldn’t, didn’t breast feed. Finally after fighting with her and my breasts for a long torturesome 8 weeks with Lord KNOWS how many “lactation specialists,” I said I give up and gave the girl a bottle. She won battle #1. She has won every battle since. At a certain point I just can’t fight with her anymore. 

She doesn’t do it on purpose. Truly, I know this. My heaven’s though…. sometimes I truly feel like she’s out to kill me. I can laugh about this since this girl is also the girl who wants her mom by her side as much as possible. 

So here we are… on the brink of her teen years. She is a smart girl, but she has challenges. We now know she has ADHD and more truthfully, ADHD with Anxiety Disorder. She worries… about EVERYTHING. No matter what you say, she has 4 reasons why that won’t work already lined up and 8 more are coming right behind it, yes, even if NONE of them are even a tiny bit logical. That is frustrating as all get out. 

For example, if you say, “Brooklyn, talk to your teacher about not understanding that math problem.” She will say “She won’t talk to me, she’ll be to busy with every one else’s problems, then Johnny will step in front of me, then it will be time to go to the next class and then Mr Broo will be mad because I was late.” – Um WOW.. you know all that now at 6:30am and you have not even been to school yet? “Yes, MOM, jeez, you jut don’t know.” That’s usually when I start rapping “Parent’s Just Don’t Understand” by Will Smith, she huffs, puffs, rolls her eyes at me and slams the door. I start laughing. Apparently though, its not a laughing matter because then I hear “IT’S NOT FUNNY, MOM!” To which her autistic brother looks at me and says, “Its kinda funny, mom!”

Other times, outta the blue I will say things like, “Brooklyn, you know it has been found that people with ADHD do better in neat and highly organized space. So why don’t we fix your room so you can be in a better space to help you.” Sometimes, she yips YEE HAW cuz she knows that means we get to go shopping for new buckets and bookshelves and what not. However most of the time, it is ok fine, we do it and within a day or so its all a chaotic mess again. 

Mind you, I am not the neatest person in the world. I’m messy. I always have been. For me, its a matter of being lazy. I do it… but when I have to (like if someone calls and says hey we’re stopping by in 10 minutes!). However, for Brooklyn, it is much much more. She has executive functioning issues that keep her from being able to see past this very minute. I try and help her, “Hey Brooklyn, lets set up a daily to do list to help you stay on track so you don’t forget about that Science experiment that’s due in a month.” We spend the time together setting it all up but then in a week I ask, “how is that working” and find out – she never used it. Maddening. 

I have tried, and tried and tried. I am out of options. I do not know what to do. I want to give up. Like, all the time, I want to give up and just walk away. Parenting a child with special needs is hard, real hard. Parenting TWO kids with special needs is damned near impossible. Doing it alone with no help from your ex-husband (which is pretty much one of the reasons – biggest reasons- he IS your ex-husband) is damned near impossible. 

I want to give up. 

Brooklyn and Steve are at their dad’s this weekend. I had a moment, was on my computer and realized I had not looked into the grade portal in a while. Knowing Brooklyn was out sick this entire week from school, which in middle school is a death sentence anyway, I knew it wouldn’t be pretty, but I was not prepared for what I saw. WOW, those grades are TERRIBLE…. like SO TERRIBLE that she could get put on academic probation and not be able to perform in the show choir competitions, kinda terrible. Which if you know ANYTHING about Brooklyn…. telling her she can’t sing… you may as well stick a knife in her heart. How the HELL did that just happen. I swear I JUST looked at this portal a couple weeks ago. 

So now, here I am, beating myself up again. 

You know, mom, that EVERY kid you know at this age (which is a lot) is working harder than she is. You know, you’ve given in and let her be on her phone, watch youtube too much. You know, you’ve “suggested” she study more but have not pushed her. You know, you’ve given up… why are you so surprised she’s here? Yeah the whip is pretty long this time. 

I want to give up even more. I want to hop on a plane to Fiji, lie on the sand with a pina-colada and a cabana boy named Matthew. I want out. 

Oh wait, I can’t hop on a plane to Fiji. I can’t sit on the beach drinking Pina-Colada’s and I really can’t have my cabana boy named Matthew. 

WAKE UP WOMAN…. you’re a mom!

So, I have a decision to make. Am I going to blame the girl and her issues or am I gonna wake up, pull my head outta my ass and help her? Clearly, she can’t do it alone. Nor at 12 should she have to. I guess her biggest issue… well… IS ME. 

I don’t know how. NO, I mean I REALLY don’t know HOW to pull it together. How I can be that amazing SpEd Mom to BOTH of them at the same time, especially without Hermoine’s magical time turner thingy jiggy (man I could really use some magical powers about now, JK ROWLING if you are reading this).

BUT I HAVE TO…. for if I don’t… who will?

Time to print some more “To-Do Lists” and “Reward Charts” and try again. 

~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