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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When I talk to my friends who have kids that aren’t on the spectrum, the same sort of comraderie about the full moon just isn’t there. They claim their children don’t act any differently that week. So what makes our kids so absolutely crazy that one week each month? They must be werewolves? Right? That’s got to be it. I know, I know. There’s probably something scientific about the magnetic pull of the moon, etc., but werewolf is way more fun, isn’t it?

This monthly craziness made me totally identify with fellow author Kerry Ann Butler in Wit and Wisdom From the Parents of Special Needs Kids. Kerry Ann talks about how her son seems out of control during the time of the full moon.

The tribe has a choice name for her [the full moon] as well, but I will let you use your imagination for what we call her. I will give you a hint: she is as old as her profession. She is the reason my sweet boy will wake up at 2:00am laughing at her and then me because I actually say, “Go back to sleep. It’s still nighttime.”There is no time for sleeping when the moon is full and BSC-time [batshitcrazy] is to be had.

What I find absolutely awesome is that the professionals that work with Kerry Ann’s son get it too. They don’t look at her like she’s crazy when she mentions this particular phase of the moon.

*If you’d like to read more from Kerry Ann Butler, she can be found as co-author with her husband Paul at The Butler Way. 

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Friday

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

At the same time, no one is talking about the toxic spouses. Often times, when you have one of those toxic leaders, you will find a spouse with them who is toxic. You know the ones. The rules don’t apply to them, or their kids. Case in point: a group of kids was playing in the street in front of our house. Their ball hit out house twice. Twice I told them there is a playground and green space on every block – go use it. It’s against post rules to play in the streets, not to mention a serious safety issue. Not every one drives 15 MPH on post all the time. So, kids didn’t stop.

So I called the barracks police. Kids told parents. Parents were mad, and one mom came over pissed. She said that not all the kids live on the same block and not all of the parents want their kids crossing the street to play because they can’t see them, so they play in the street. Yes, because this solution makes sense. Play IN the street where you can get hit by a car, rather than on a playground where there are no cars. The kids’ parents I guess can’t take turns supervising the kids in a safe environment, but want to be helicopter parents and have their kid play in the street so the kid can be seen at all times. At the same time, teach your kids the rules don’t apply to them. Yes, that makes perfect sense.

And the reason she was most mad? Because I called the barracks police to handle it instead of finding out where the kids live and talking to their parents. Yes, because I’m going to track down where a group of about eight kids live. That’s exactly what I want to do with my evening. Her justification was that they didn’t damage our house. Yes. Because THAT was the point.

So, now I’m the bad guy because I didn’t want my front window possibly broken while we were sitting in front of it. I’m the bad guy because I had the audacity to make sure that a rule that applies to EVERYONE was enforced. I’m the bad guy because I’m a stickler for safety.

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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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Not only do I read for dietary necessity, but also for nutrition. I like to know what we’re eating. Sometimes I think about it after I’ve gotten a product two or three times and think, “well no wonder it tastes so awesome. Sugar is the second ingredient.” Then I look for an alternative. This doesn’t happen with obvious foods either. Have you ever looked at your favorite salad dressing’s ingredients?

Does my family still eat things that are junky? Sure we do. We like chips, chocolate, and candy just like anyone else. So how do I balance it? Well, I stay away from sticky fruit snacks. Sure they say they’re made with 100% fruit juice to make you feel better as a parent about buying them, but they stick to your kids’ teeth and are more likely to cause cavities than that chocolate bar. I let my kids have the chocolate bar. Don’t believe me? Ask your dentist. Their answer will let you know if they want you to fund their child’s college education or not. For chips, I generally only buy Utz. Why? Because I love me some BBQ and sour cream and onion flavored chips on the occasion I do buy them. They are the ONLY brand I’ve found that the flavored chips don’t contain MSG. The boys like Pirate’s Booty, and a couple other organic and gluten free snacks. I just make sure they know that organic doesn’t make them automatically healthy. They’re just a better option if you’re going to snack is all.

During the summer, we eat a lot of fresh produce. I can’t keep tomatoes, berries of all kinds, and corn on the cob in the house. The boys love the taste of the produce in season. I find myself often buying produce at least twice a week to restock. I am by no means complaining. They know what a serving size is, and that a serving size of berries makes them feel fuller than a serving size of cookies. I let it be their choice, so there’s no power struggle.

Let’s face it, there’s a lot of junk in our foods. We can’t trust the FDA to regulate foods to be healthy for us. They seem to pander to the food industry’s bottom line instead. It’s up to us as consumers to read the labels and decide what our families will consume.

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School Transitions

I suppose, I should introduce myself a little bit… My name is Cheryl and I have 2 girls, Lauren who is 4 (turning 14) and Jillian who is 2.5 (turning 30). Their attitudes have a lot to be desired sometimes. While they’re not driving me to the brink of alcoholism, I also have a husband who likes to hang around my house and play video games. Well, I guess he DOES bring in the bacon, so, I’ll give him props for that (props…)

Now, I’m not a military wife. I grew up in a military household though. Between 3 members of my family, we had the navy, army and air force covered. I’m not here to talk about THEM though, because obviously if you don’t know me from my blog, you’ll soon find out that everything is always about me.

The thing that brought Amanda and I closer together was the fact that we’re both bumbling our way through raising children with special needs. While Amanda’s children are on the autism spectrum, my daughter Jillian has Cerebral Palsy. And just like no 2 kids are the same, nor are 2 diagnosis’ (even within the same category) are the same. But that’s the thing about most special needs parents, regardless of what our children are affected with, we can relate, empathize and sometimes sympathize with each other.

Lately, Amanda and I talk throughout the day on messaging client or via texting. (Thankfully her cell phone company doesn’t charge her an arm, leg and kidney to text to Canada). I had mentioned a few days ago that a friend of mine remarked how she LOVED parents of special needs kids. WE are the people who know how to talk to her son, and we know how NOT to do it too. So, here’s my topic for today. How to talk to my child with special needs, class 101. (Ok, really, it’s not a class. I just liked how that sounded). (Also? Most of these techniques can be applied to “typically”- oh how I hate that word- developing children as well. Call it a two-for-one deal, if you will)

• Please don’t look at me and ask “What’s WRONG with your child” and ignoring my child like she’s not there.
• If a child is in a wheelchair, get down to their level and look into their eyes.
• If a child is non-verbal, they usually have another way of communicating, even if it’s just a smile.
• Please don’t ever say “Oh, I’m so sorry” because that makes me want to say “Oh, I’m so sorry your face is ugly”. Most special needs parents are NOT sorry their child is in their lives.
• Please don’t stare. I bet you wouldn’t like it if I started gawking at you with my mouth open.
• If you’re curious? Ask a question.
• On that note, we are also human, so, if we snap at you, it’s usually unintentional and we’ll feel guilty about it later.
• If your child points, stares or asks questions about my child, be open about it. If you don’t know, ask. Don’t shush them and then walk briskly away with pity in your eyes.
• (this goes for ALL HUMANS) if you see a child having a temper tantrum, you don’t know the whole story. Don’t judge and say “wow. She has NO control over her kids”.

So, there ya have it. My version of what is acceptable to do or say with special needs children. Often? A smile goes A LONG way. I know that if I’m having a challenging day, having another person just simply smile at me improves my mood tenfold. If you’re a special needs parent, do you have anything you’d like to add to the list?

*I’m not responsible for any peeing of the pants while reading Cheryl’s blog. Yes, I think it’s that funny sometimes.

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I'm Published! Wit and Wisdom From Parents of Special Needs KidsPressing Life QuestionsAnd The Band Plays On...

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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