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.

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Knowledge is Power - IEPsEleven Years

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.

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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.

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Ridiculous School Lunch Policies

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.

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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.

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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.

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The Little Things

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.

Parents don’t just want a choice of schools based on academics alone. What about special needs kids? I don’t just mean autistic kids like mine. I mean ALL special needs kids. I’ll bet you didn’t know I was labeled special needs and had an IEP in school. Yep. Most people only think education and developmental deficit when they think special needs, IEPs, and 504 plans. Don’t forget the other end of the spectrum. Those of us who go through school in the gifted program also are labeled and have IEPs.

We as parents just need more choice period. Since several federal laws were enacted, there is an attitude of teaching to the “lowest common denominator” in a classroom these days. Don’t believe me? Ask some teachers. I know several, and they’ve been instructed by their admin (from several states and areas) to “aim for the middle and hope for the best.” Really? Is this what our education system has become? That’s not how I remember it when I was a student.

I think vouchers should be open to ALL families of special needs children regardless of income. Why? Because even if you have a decent income, a lot of that may be being spent on therapies, equipment, etc. that your child NEEDS. A parent should not have to be forced to choose between therapies for their child(ren) and the best education they can get.

Sure there’s always homeschooling, but PA has some of the strictest homeschooling laws. They certainly don’t make it easy. Not all parents are cut out to homeschool either. By the same token, I’m sure there are kids out there who just don’t do well with homeschooling either.

Sure, there’s also private school, but if your child has any sort of special education plan, they’re not required to accept your student, regardless of your ability to pay. They may also not have services available that your child may need to get through a school day.

We need more educational CHOICE for ALL. Right now, the choice mostly lies with the affluent with neurotypical children.

Regarding the weather, sometimes you just miss the mark. I know we don’t have a lot of snow out there right now. I can see that. But did you hear the freezing rain pinging off your windows from about 1:30-3am? I did. That’s under the snow. You only called a 2hr delay. The forecast is calling for a mix of precipitation ALL DAY. By tomorrow, forecasts are predicting 1/2″ of ice or more. Do you really think it’s safe to have buses out there today?

While we’re talking about schools, colleges and universities – you suck. You don’t exist in a vacuum. You all too often have commuters who attend your campus. Just because conditions on your campus may appear fine, or because it’s such a small are your crews have everything cleared and treated, that doesn’t mean your commuters, faculty, and staff can get there. This poses a huge safety issue because these people think they *have* to be there if the university is open. My husband is one of them. I’ve long thought you need to rethink your policies on closings and delays based on campus conditions only. Safety first people.

Thank you,
Concerned mother, wife, and citizen.

Logisitically, this is going to be a nightmare without several months notice. It’s often very hard to get in with new doctors, especially the specialists. Hell, we’re STILL waiting for the Intermediate Unit to evaluate our 3 year old to see if he needs early intervention services (I’m thinking he does since he’s severely OCD). His initial referral was April. His speech evaluation that he failed was the end of June. I’m supposed to get a call this month, but it’s the 20th, and I’ve called and was told December, and they’d call me back this month with a date. I have yet to get a date. My biggest concern is that I’ll have to start this whole process over if we move, and we’ve already had to wait 6 months with at least another 2 months to go.

And housing. This is the only place I’m told in our state with officer housing. There’s only one other Army place we’re aware of in the state that has any military housing – period. If we leave this area, we’re definitely going to be on the economy. Do they not know what the housing market is like? Do they not know how hard it is to find places to rent? This is certainly not the time to be buying a house and trying to flip it in 3 years.

Is it just me? Is it because I’m married to a logistician that I think like this? Honestly, I don’t care about pack dates. Shove our stuff in boxes and let’s go. That’s the least of my worries. It’s the doctors, specialists, finding a school district that can meet our son’s needs, and a place to put our stuff on the other end that’s concerning me.How do you other milspouses cope with this? My husband is even antsier than I am.