Now, I can breathe. I can concentrate on what’s important. I can concentrate on the day to day bullshit that we always have. The therapies. The behaviors we’re working on with the boys – the ones we’re trying to instill and the ones we’re trying to eliminate. The doctor appointments. Trying to figure out why Aaron is losing weight. What the hell we’re going to do all summer. You know, the usual.  I like the usual. Usual is good.

Now that our conflicts are resolved and I don’t have to worry about my older child’s safety as far as transportation every day, I can worry about more important things – like curtains. Like who the hell makes a window less than two feet wide and I don’t even know how long because I didn’t measure, but it’s going to need at least an 84″ curtain. We have one of these windows each in our bedroom, Aaron’s bedroom, the kitchen, and 2 of the bathrooms. Then I have to find a way to dress the windows on the doors in our bedroom and Zach’s bedroom. Why? Because I get migraines, and I need a cave when I get one, and in Zach’s room because I don’t want the light waking him up at the butt crack of dawn. I love this historical house and the huge windows, but at the same time it’s a pain.

But after all we’ve been through lately, bring on these first world problems. PLEASE. We need piddly stuff I can fix fairly easily for awhile. I think we’ve earned it.

We also met a nice neighbor. She brought us cookies to welcome us to the neighborhood. She didn’t even take them back when we told her we just moved from the other side of post. I really like her, and she’s not a Kool Aid drinker. They’re Air Force, which totally explains it. I think I’ve also made another friend through our ordeal. Even though it was all a pain in the ass and totally unneeded stress, it wasn’t all bad since I did meet a couple nice people in the process.

I think this is where I’m going to leave this chapter of our lives and move on with the rest – until the school decides to be asshats again. Six more weeks has become my mantra.

Oh yes, he did. 

There. Now I feel better. I’ll never understand why people have to lie instead of just doing their job the way they should the first time. I’m assuming the lying was an attempt at ass covering after an ass reaming. Note to schools, never mess with parents. You never know who they have in their back pocket. Especially parents who know their rights, and know that you can’t tell them you will not hold another IEP meeting because you just had one. If I request another IEP meeting, you’ll have one in the next 30 days and like it. Just sayin’.

Without further ado, the star of our Fridays, and hosted by Sunday,

This feeling of the unknown also carries over to Kindergarten. Our younger son is transitioning from preschool to Kindergarten. I think the biggest challenge (besides getting the accommodations he needs) is to get the school to see past the autism to see the bright and sweet boy he is. He’s going to need challenged, or he’ll find his own way to stay entertained. It’s going to be interesting. Add to that his multiple food allergies, and this mama is just a tad freaked.

I was OK with the food allergies while the symptoms were all GI. We were out in public a few weeks ago, and the 5yo had a contact reaction. We were at an indoor play place. There were three birthday parties going on while we were there. There were children with food on the play apparatus. I have no idea what caused the reaction. The school serves peanut butter and jelly every day as one of the lunch choices. Elementary kids are not clean little people. So they could have a peanut free table for our son until the cows come home, but that doesn’t eliminate the threat of a kid who had one of his allergens on their hands and then left residue in the bathroom, on a door knob, or elsewhere in the classroom. Even if they have the kids wash their hands, unless the teacher is going to inspect every set of hands, I’m worried about another contact reaction. Peanut butter doesn’t always come off with a regular hand washing if it gets stuck in your cuticles or under the nails, as I’ve learned when I have baked with it in the past. And a citrus fruit allergy. There is citrus fruit in place you’d not thing it would be. Is everyone going to read labels, check for may contains? So many uncertains.

From what I’ve gathered so far, there is no formal process for middle school transitions. I need to get on this because we need to know what building my older child will be in next year so when we write his IEP this Spring, we can write an appropriate IEP. Otherwise, I”m going to have to pull everyone in next September.

For Kindergarten, I’m going to have to see what the school feels falls under FAPE. What do they feel is the least restrictive environment? Can they accommodate my child’s needs so he can be the most successful student he can be?

These are just a couple of the things that keep me awake at night.

I’ll start with Zach, my Aspie. He’s currently a 5th grader.

A. Tools/Assistive Devices: Zach has fidgets and a chewy of his choice written into his IEP (I will be pushing harder for more socially acceptable gum as he transitions to middle school next year). This is the first year he hasn’t really utilized either, but he has expressed that he’d prefer to chew gum like he was allowed in a previous school in 2nd grade. It was a class wide thing his teacher did when the class did writing prompts that he found helped him. This school wouldn’t allow it though despite the research proven it helps kids concentrate.

He has a notebook to write down thoughts instead of blurting them out in class. Also to draw and doodle because it helps him listen when the teacher is talking, and it gives him something constructive to do when he’s done with his work.

A checklist of what needs to come home every day on his desk.

This year’s teacher puts homework online, and she has gone the extra mile to put the spelling words for the week online with the homework since we have an issue with “forgetting” the list. I think it’s more because spelling is really easy for Zach and he finds the homework part tedious.

When there is a substitute, someone from the office checks in periodically. We’ve had issues with subs not having control of the class, and Zach will try to resolve an issue on his own when adults won’t intervene, and not always in an appropriate manner.

He is not to miss more than 5 minutes of recess for any reason. If it’s absolutely necessary that he miss recess, he may walk or jog around the perimeter of the playground, but there MUST be physical activity or he can’t settle to concentrate.

B. Services: We’re fortunate enough to get ABA therapy both through the school and our insurance. He gets about an hour a week through the school and about 2-4 hours a week depending on what we feel is necessary privately either in school and/or at home.

Aaron is 5 and currently in preschool. He is dx’d as “low functioning autism, but verbal.”

A. Tools/Assistive Devices: Aaron currently doesn’t really have a lot in this area currently, but we will be asking for A LOT for Kindergarten. His current class is about 15 kids to 4 adults. The environment will drastically change with 30 kids to 2 adults next year. Aaron does have an iPad that we use at home, and his speech therapist has used as a positive reinforcer and as a therapy tool.

B. Services: I’m going to group these by at school and outside of school. At school Aaron gets OT and speech therapies. His IEP says 1 hour per month of each. Yes, per MONTH. Ridiculous, I know, and I’ve been told, that’s about what I can expect anywhere. However, I think he currently gets a bit more since his classroom is set up in a way that both are integrated into his time in class. So, if the SLP is working with one child, and that child is conversing with Aaron, she’s also going to prompt him to interact appropriately. Both of the school therapists have been eager to continue what we’re doing privately.

Private OT – Aaron has made HUGE strides. His focus and our ability to help him calm using the sensory techniques the OT has taught us have been awesome. A 170 improvement from where we were. My complaint is that she was temporary and the facility won’t have another pediatric OT for months. Activities we have done in OT are practicing buttons, tying shoes, playdoh, putty, picking up beans and beads with tweezers, writing, flicking paper footballs, cutting with scissors, rice container, bean container, bead container, swing, brushing, joint compressions, tunnel play, drawing, coloring, mazes, dot to dots, lots and lots of writing and hand work. Aaron went into therapy using both hands. We had to choose a hand for him to write with based on which one was stronger. We went for 1 1/2 to 2 hours a week depending on what was open as far as sessions from August until January while they had a therapist for Aaron.

Private Speech Therapy – 30min-1hr a week. It depends on the schedule and how well Aaron is in a groove. Our therapist lets him set the pace which I like. She still  pushes, but knows when enough is enough. She also works with the school district, so I’m hoping for continuity of care when he starts Kindergarten next year. Aaron has worked on time of day- day vs. night, describing objects beyond shape, color and number, answering WH- questions, following multi-step instructions, describing a scene, and conversing for more than just a few turns, and ending the interaction appropriately instead of just stopping or walking away. The WH- questions has been huge.

ABA therapy – All privately provided by our insurance currently. Aaron gets roughly 4-5 hours per week at school and home. One day a week is at school, and one is at home since he currently only attends preschool 2 days per week.

I don’t call this a victory, but it is progress. Some schools will state they have water for sale. That’s great, but that’s a restriction. Not all students can afford to buy said water. Then you have that one teacher who’s on the rag and bitchy during her turn to supervise the kids at lunch. She now can’t tell a kid, “No,” when they ask to use the drinking fountain, no matter how much she wants to do so. At least it’s not in her best interest.

Oh wait, I forgot about the 100% juice substitution. I was told last year that my lactose intolerant child can get 100% juice to drink instead of one of his fruits on his lunch tray. Yes, that means he can forgo food for a drink. They are teaching our kids to consume liquid calories.

Having drinking water available still doesn’t solve the fact that our kids who are lactose intolerant are forced to buy a milk with their lunch, charged for it, but can’t drink it. They also cannot trade it with a friend since there are so many food allergies now, there is no trading at lunch anymore. This is wasted milk. I find this deplorable when so many of these kids are coming to school hungry. You want to know how to save money in the government? Stop reimbursing schools for thrown away milk. Let them offer rice or almond milks instead. No, DO NOT offer soy. Enough ingested soy can mimic estrogen, and I DO NOT want my son drinking soy milk as an alternative to cow’s milk. I’d rather he drink calcium fortified orange juice before soy milk quite frankly. Do your research, but that’s probably asking too much of a government organization like the USDA with such antiquated practices when it comes to school lunches.

This nonrestricted access to drinking water at lunch is indeed a step in the right direction. I do wonder why it took until 2011 for it to happen. Abdominal cramps, diarrhea, and vomiting are all enough of a reason that a child should be exempt from drinking milk. It’s not like the child is faking these symptoms, and the symptoms will hamper the child’s learning process if milk is ingested. Just because a child doesn’t need an epi pen doesn’t mean their dietary needs aren’t serious. You would also think the schools would take these intolerances more seriously when family doctors and allergists are filling out the paperwork for the cafeteria saying the child cannot drink milk, but it doesn’t seem to matter.

If more people would take the time to educate themselves rather than shove antiquated policy down our throats (policy that can be changed), we could worry more about what our children are learning in school, and less about if that school lunch will make them too ill to learn due to a government agency’s ignorance.

My son is lactose intolerant.

The dietary forms state “The School/school district does not make milk substitutes available to students with non-disabling special dietary needs. We do however have soy milk, bottled water, and orange juice available for purchase daily.”

So what IS disabling? Unless they’re going to move class to the bathroom, I consider diarrhea and stomach cramps disabling (sorry, son).

It’s not like he asked to not be able to not be able to digest milk well. Just because it’s not a full blown allergy and he can still eat cheese (which most people don’t realize most cheeses are low or lactose free) and yogurt. ice cream is Russian Roulette. Some are OK, and some are not so much. I let him make that call now that he’s older.

But to drink a carton of milk with his lunch IS disabling. It would definitely give him digestive issues.

So now the school wants us to pay extra for that.

What do lactose intolerant kids who are getting reduced or free lunches do?

Oh wait. I was told last year that he can substitute one of his fruits with 100% fruit juice. So they can forgo a food for liquid. Yes, that makes perfect sense. Because our kids are all fat anyway, right? Sure, let’s ply them with liquid calories instead of food.

*eyeroll*

You know it’s a new school year when your brain is ready to explode from ridiculous policies that are attempted to be imposed upon you.

I will be fighting this. It’s the principle of the matter.

It’s not like I’m asking the entire school to use mouthwash before they talk to my kid. Just give him one of those waters or OJs instead of milk.

What we as parents have now that our parents didn’t is more of a choice. There are now charter schools in addition to the traditional private and public schools. We also have cyber charter schools, and homeschooling your children doesn’t have the stigma attached to it that it once did. We also have states like right here in Pennsylvania where school vouchers are back on the table. I would love to see a voucher program put in place. Create competition amongst the schools to make them compete against each other for students.

There are still some people who feel that homeschooling is not the right option for kids, and the tired old argument is the socialization issue. I just don’t see it. The kids we see who are homeschooled have livelier social calendars than those of us tied to the public school system. The homeschoolers have a more flexible schedule that allows them more hands on experiences and outings. Also, kids who know the material can move right along instead of sitting and twiddling their thumbs waiting for classmates to catch up like they do in a regular class room. Besides, when do kids get to socialize at school? They can talk to each other on the bus, at lunch, and at recess. The socialization opportunities aren’t as great at least at the elementary level as one would think. We even found out that classes are now made to sit with each other at lunch, so if you have a friend in another class, you won’t see them until maybe recess or if your parents schedule something after school.

The best part, we are FINALLY past the behavior chart/sticker chart phase. The child will be 10 years old in about a month, and we’ve been doing reward systems since he was 3 1/2. We’re DONE. I did the Snoopy happy dance in my head when we crossed that off the IEP.  I also heard about all the stories Zach tells in school. His Aaron anecdotes especially. Wonder if he’s mentioned the blog. Glad he doesn’t know the name.

Now, we just need to get Aaron’s school on board. Which, was also discussed briefly while we were waiting for everyone to arrive yesterday. I discussed with the school people what services he’s receiving (or lack thereof), and what they can expect from the agency that services the kids of special needs when they get these kids for Kindergarten. It’s not pretty folks. At least not in our experience. Someone else at the meeting who worked for this other agency at one point said I’m not the first parent to express this point of view. It’s nice to know I’m not the crazy one. Sometimes it’s good to have the confirmation that it’s really not me.

So, I’m sticking to my guns that my child will NOT be mainstreaming unless this current school can prove to me that he’s miraculously made such strides in 8 sessions of 2 hours and 45 minutes each – since January. They’re going to be hard pressed to do as much since Tricare has approved 3 sessions a week of speech and OT as soon as we’re off the waiting list. Consensus seems to be if Tricare approved that much, the kid really needs way more help than he’s already getting, and he is NOT ready to mainstream.

We’re also currently waiting to meet and greet with a 2nd BCBA for Aaron so we can choose who we’d like to work with him. We all liked the one that was here last Saturday. We have another coming next week. I’ll also have the BCBA observing in Aaron’s school as my eyes and ears on a professional level to confirm what everyone else thinks – the preschool is on crack and trying to figure out what to do since their funding got cut like everyone else’s. My child will not be a budget casualty.

So really, what it took me 400 words to say was elementary school good, public supported special needs preschool sucks rocks.

I need to call and check on ABA, but it should be all set if I have papers for everything else. I’m going to call and see so we can get that going ASAP. I need eyes in the classroom with my 4 year old that know what they’re looking for as far as what services are really being provided. There was some defensiveness from the current speech provider at the school who was calling to touch base with me (ie. push me to say I’ll mainstream him), when I said he’ll be getting ABA and as soon as we get someone they’ll be in the classroom to observe so there’s continuity between school and home. What I really meant is, “I’m not seeing the progress you claim you’re seeing, and I want proof you’re actually following his IEP because I don’t believe a word you say since your funding got cut, and you already dropped the ball on getting him speech therapy when he failed his speech eval last JUNE, and it took a nasty phone call (that was never returned) to get him that full eval and into school in JANUARY.”

Now on to tackle the 9 year old’s 5th grade IEP next week. FIFTH GRADE. I can’t believe I’m going to have a kid in 5th grade. It’s bittersweet for me as I read around about IEPs. The majority of what I see is that IEPs tend to tank in 6th grade. I hope that’s not the case and that next year isn’t our last year of good education in the school system for him.