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

 

 

 

Seismic Shift

I can not tell you when it happened. Not a specific date, or time. I can only tell you that something has happened. Part of me is scared to death to even say it out loud. For YEARS… and I mean YEARS I have been working, intervening, helping, pushing, guiding, loving my son who was diagnosed on the Autism Spectrum, and who also has ADHD. 

Sometimes, believe it or not, it is very hard to tell the two things apart. I feel the two within my son work hand in hand (or in some cases, in polar opposition to one another). Some days have been tougher than others. However, most days have been tough. 

They say he is “high functioning.” I hate that term. I find that some people just need more support than others for different reasons and different things. This is no different than in the neurotypical world. Some of us need alone time than others. Some of us need cuddle time more than others. Some of us need to be touching our significant other when in their presence, and some of us don’t have to touch at all. Does that make any of US “less” functioning than the others. We are just all very neurodiverse. 

So, I don’t know when this shift happened. I am not sure I even know WHY this shift happened. All I know is, it seems as though a shift has happened (can you tell I’m still processing that this shift has happened). 

My son has decided on his own, to take control of his body, mind, spirit, learning and needs. Yes. I said that. He has articulated his needs in ways I didn’t know he was able to (especially since the beginning he couldn’t speak). He has decided that it is time to step up and “Do this thing!”. 

Here is just ONE example of what I mean by this shift:

In the past, in order to get ANY homework done, he needed someone to be sitting next to him, constantly redirecting him to sit down and do his work. Steve, sit down. Steve, do your work. Steve, read this question. Steve, common you need to read this question, then answer this question. Steve no, you can not bring your toys to the table, Steve…. and so it went. This happened all the way up until the the teachers gave up giving homework out for the last couple weeks of school last year, Third grade. 

After declaring his preparedness to learn this year, Steve was handed his first homework assignment of the year. Without the help of an aide, Steve went straight to daycare and when told it was homework time, sat right down and did his work. He didn’t complete it but made a solid effort and articulated to the daycare person, he was going to complete the rest at home. 

We got home, he sat down at the table while I was preparing dinner, he started to finish his assignment. We then ate dinner and left for his sister’s gymnastics lessons. Knowing he still had to do 20 minutes of grade level reading, pulled out his book and asked, “How long does it take to get to gymnastics?” I replied, “about 10 minutes.” He responded, “Ok, I’ll start reading now then can we sit in the car until my reading time is up? Then my homework will be done and I can start my screen time I earned.” My response…… was a wide opened mouth with no words. 

When we got home from the gymnastics lesson, after the reading was complete and the earned screen time had been used, I asked a question that I thought for SURE was going to push Steve over the edge……… but I asked it anyway. 

“Hey Steve, how about we start filling in those dates on the timeline project due Thursday now, so you have left to do tomorrow since you have soccer practice?” – I held my breath…. expecting the meltdown ANY second. 

Instead, I got a resounding, “Sure Mom, that sounds good.” We did half of the project. Now he only has to write a paragraph about what he wants to be when he grows up. Secretly, I’m thinking he’s gonna be one hell of a lawyer, but I’m sure he’s going to say video game designer or something. 

Again, I don’t know how it happened, I don’t know WHY it happened, and I am sure never going to ask how long its going to last. “Carpe Diem” to quote one of my favorite movies of all time. I am just going to seize the day with a giant smile on my face. 

#SoFreakenProudOfSteve

~me

HOMEWORK

My little man, Steve is a creature of habit. Well, more like a structured individual who needs routines to be successful. That’s more Autism speak now isn’t it.

Steve has been out of the “homework” routine for a while now so a NEW routine has taken hold.

The NEW routine would be do the bare minimum homework at daycare so it is done then when Mom picks me up I get “screen-time” (his most preferred item)  until 7:30pm when it is VIDEO SCREEN CUT OFF TIME.

That NEW routine was working just dandy for us all. Until it wasn’t.

Realizing lately that he’s not being pushed enough (see the post about pushing him here: https://adventureswithbrooklynandsteve.wordpress.com/2015/04/13/time-to-push/) I decided this NEW routine needed to go back to the OLD routine. The old routine was 1) Screen-time in the car on the way home from daycare if had earned it with good behavior at daycare. 2) No TV or screens of any kind until at least 30 more minutes of homework if he had it or reading had been done. 3) Video Game/Video Screen Time until 7:30 if all the above was completed. 4) Watch some TV then off to 5) Bedtime rituals (you know… brush teeth, bath, get dressed for bed, nightly talks etc).

Well last night – push came to shove when the teacher decided it was time to push the kids too and he gave them TWO homework assignments.

The amount of time it took Steve to do the actual work of the assignments was about an hour.

However, Steve being Steve, he found a way to turn that hour into 4 and a half hours with tantrums, meltdowns and a whole lot of tears and whining. Fits at daycare with his behavioral aide, fits at home with me before dinner, after dinner. Calm down breaks and such. He even ended up having to get up earlier than usual this morning to finish the homework.

But here’s the thing… thanks to my 2+ years of ABA training… this time was different…. not different for Steve as much as it was different for ME. I now know how to determine WHY Steve is doing these things. Is he trying to get attention, is he trying to avoid the work, things like that. Once you understand the why’s it is much easier to stay calm cool and collected. For the first time in having our homework meltdowns… I didn’t get upset.

Why is that such a big deal?

Well, it is such a big deal because 1) you can stay awake and aware and be able to collect ABC data. 2) you can stay calm and keep from having a stroke at 45 (that IS kinda important afterall) 3) you can talk about things with your kid more rationally after it is all over.

Case in point, in our nightly talk when all was said and done last night I was able to talk with Steve. Here is how that conversation went:

ME: Steve, the actual work… was it too hard?

Steve: No.

ME: Do you know how long it took you to DO the actual work work part?

Steve: No

ME: Well, I can tell you because I know you saw me taking notes, The actual WORK WORK part only took you about an hour. 60 minutes. That’s it.

Steve: really? I think I cried longer than that.

ME: Yes, you kinda did. Well not so much cried that long, but between the tantrum with J (aide) and the tantrum here, the calm down time in your room, the tantrums AND the home work it was over FOUR hours. 4 buddy… 4.

Steve: ohhhh so I didn’t get my screen-time tonight because I wasted all my time to play?

ME: Yep buddy… that is right!

BY GEORGE… I THINK HE’S GOT IT.

I am happy to report… this morning Steve got up right when his alarm went off, got dressed and came out to the table. He sat down and we finished the homework just as we talked about doing last night before falling asleep.  Steve then had 30 minutes of time to play this morning before we had to leave for school.

Image is of Homer Simpson exclaiming DOH when he realizes just how dopey he’s been.

DOH