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Holiday Affirmations

It’s the holiday season and I know you’re stressed. I’ve been reading all about it on Twitter and Facebook. It’s not just the decorating and gift-buying and cooking and schedule changes for the kids, it’s the inevitable friend or family member that leaves you feeling slighted, judged, and unappreciated.

 

We all have at least one of those in our life. But I want you to know, even if you don’t hear it from the ones you’re with during the holidays, that you are awesome. I’ve made a list of all the things you should be hearing from your loved ones as thanks to you for making space in your busy life for me and my Connor stories.
affirmations rev 1

And try to remember that it’s temporary. You will get your sanity back in January!

Two Children, One Spectrum: School Support

two children part 7

 

Welcome to Part 7 of our series, Two Children, One Spectrum. Jen, from Anybody Want a Peanut, and I continue to describe the similarities and differences between two children diagnosed on the autism spectrum. Today’s topic is about the kinds of support our boys receive in school.

 

Moe:

School was a disaster for Moe. I could write an entire blog about how the school failed us and our ongoing issues with our district. So for now, we home school Moe. We run an ABA-based program out of our house, with therapists coming to work with him throughout the day. It is a highly scaffolded curriculum that combines early academic skills (sorting, matching, letter recognition) with behavioral and communication goals. Because both I and my husband work, we also hire very well qualified caretakers to be with him. Our wonderful nanny continues the programs throughout the day but also takes him out—to lunch, to the store, the park, etc.

 

This program has its benefits and drawbacks, but right now it is the most flexible option we have and it is one hundred percent tailored toward Moe.

 

The flip side of this is that no one denies his need for services. They may not always be appropriate or effective services, but because of the severity of Moe’s disability, we rarely have to “prove” his need for most services like special education.

 

Connor:

Appropriate school supports are critical for our kids to succeed in school. Getting those supports is sometimes very difficult because the system is set up in a way that keeps parents in the dark. I can’t stress enough how important it is to be familiar with ADA, FAPE, IDEA, and your district regulations.

 

Connor is in a regular classroom throughout the day. He is pulled out several times each day for motor time in the resource room. This is critical for him because of the severity of his ADHD, and the fact that schools now provide only one recess break each day. Don’t get me started on how insane I think that is, or how we’re pushing our kids way too hard. I’ll save that for another post.

 

He also has an aide come into the regular classroom to assist during math time. He needs the personalized attention because he has trouble keeping up without it. He also has preferred seating near the teacher, extra time for tests, and homework accommodations.

 

Due to behavior challenges, his IEP also includes a BIP (behavior intervention plan) where behaviors are outlined along with the protocol for positive behavior support. The trick with the BIP is that the school will take a punitive approach to any behavior not specifically outlined in the BIP, which generally means taking away recess time. Yes, the idea of taking recess time away from an ADHD kiddo is insane. I’ve spent the last few years fighting at every IEP meeting to end this practice. The best I could do was to get them to include in the IEP that he would never lose ALL of his recess time, and would only lose up to 10 minutes, if needed. I am not happy with this at all, but I’m also aware that you have to pick your battles carefully.

 

He’s also received ESY (extended school year) the last couple of summers. I was told that he did not show the required measure of skill loss to qualify, so we tabled the meeting and agreed to reconvene. I brought in stacks of paperwork from the state and the district that outline all the criteria for determining ESY and, wouldn’t you know, they agreed to provide it. Academic performance isn’t the only factor for determining ESY eligibility. If behavior is anticipated to deteriorate because of the routine change during the summer then they must consider ESY.

 

One last thing I want to mention is that you have the right to request an independent educational evaluation (at the school’s cost) if you don’t agree with the school’s eval. We did this a couple of years ago and it was very helpful. We did not use someone from the school’s list, but chose our own. I’ve found that a third-party eval can be a very effective tool in planning goals and supports for the IEP.

 

We’ll be back next Tuesday and cover the topic of medication. Thursday will be Christmas, so we will reconvene the following week with the last two topics.

 

If you like the series, be sure to share!

Two Children, One Spectrum: Independent Skills

two children part 6

 

This is part 6 of our series about two different children on the autism spectrum. I’m again joined by Jen, from Anybody Want a Peanut, who writes about her son, Moe. Prior posts in this series can be found at the tab at the top of the page.

 

Today we’re talking about independent skills.

 

Connor:

Connor is pretty independent in most things. That’s not to say that he’s proficient at things, just that he can do them independently. Take tooth brushing, for instance. He can brush his teeth independently, but most of the time he chews on the toothbrush while he jacks around doing other things. When I tell him that I need to brush his teeth for him, he gets mad and defiant about doing it himself.

 

We’ve worked hard to build his skills with the mindset that he’ll be independent as an adult. He’s currently working on learning to do his laundry independently. The biggest deterrent seems to be motivation. He isn’t naturally motivated to do most things, so we have to motivate him with a token system. The tokens can then be traded for electronics time. I’m slightly worried that when he’s grown and doesn’t have us handing him tokens for things, he might not be inclined to have clean underwear or fresh towels.

 

One thing we’ve held off on is letting him be independent in the community. He’s only 9, but other kids his age roam around on bikes and walk to and from school. He’s expressed interest in doing this, but I have to go with my gut. He’s just not mature enough yet for that much freedom and he’s easily distracted and prone to lose track of time. It would be so easy for him to get sidetracked on the way home, and I’m not ready for that kind of stress yet.

 

One area that continues to be a challenge is that Connor has almost no ability to entertain himself. Aside from watching TV or playing Minecraft, he cannot keep himself busy with toys or games. When he runs out of tokens he literally follows us around, begging us to play and entertain him. Although there is plenty of play time together, it becomes impossible to get any household chores done because when play time is over he has no idea how to keep himself occupied.

 

Moe:

Moe does not have a lot of independence. I read a lot about how we aren’t supposed to be “helicopter parents” with our kids but with Moe, we are in full hover mode all the time.

 

At home, Moe requires full support to get dressed, put on shoes, brush his teeth, etc. He can help and likes to do things himself. He seems to be wanting this more and more, which is great. Moe can get undressed, for example, and if I put a shirt on top of his head, or orient his pants the right way, he can put them on. He is physically quite capable, but doesn’t necessarily have the attention or planning skills required to, say, get a complete outfit from the closet and put it on.

 

Moe loves to be out and about, and is generally a great shopping buddy. But he will also run away, or grab things off the shelf, so someone has to have a hand on him at all times. His nanny and ABA therapists have worked on some of these skills. At the grocery store, for example, Moe is now able to help push the cart or even walk alongside the cart but he is never out of arm’s reach, just in case.

 

Even at home, Moe’s impulsivity means he can’t have free access to rooms. It is frustrating for him, I know, to have to be watched, touched, or assisted all the time. He can’t understand it is for his safety and the safety of others that we have to be on him all the time. It is exhausting for us as well so we try our best to have the house be a place that is relatively Moe-proof. His room and the backyard are places of relative freedom for him.

 

Moe is not toilet trained and still wears a pull up. This is very challenging for all of us, though sometimes it weighs on me more than others. 

 

Like Connor, Moe has trouble entertaining himself with anything other than TV or the iPad. He has almost no independent play skills. This may be the most challenging piece for all of us. 

 

 

Join us on Thursday when we discuss school supports.

Two Children, One Spectrum: Behavior

two children part 5

 

 

This is part 5 in the series Two Children, One Spectrum. If you’re new to the series, you can catch up here:

 

Part 1: Two Children, One Spectrum: A New Series

Part 2: Two Children, One Spectrum: Communication

Part 3: Two Children, One Spectrum: Feeding Issues

Part 4: Two Children, One Spectrum: Sensory Issues

 

Today Jen, from Anybody Want a Peanut, and I will be writing about behavior issues.

 

Moe:

This is by far our biggest challenge. Moe has many, undesirable behaviors. We are on constant vigilance in our house.

 

Moe can be aggressive, especially when he’s frustrated or we say no, though sometimes it seems to come out of nowhere. He scratches, pulls hair and bites. These are usually directed toward an adult, but Moe has been known to grab or even bite the dog or his sister. Jelly, who is five, loves Moe, but is also scared of him and we spend all of our waking time running interference between Moe, Jelly, and the dog.

 

Moe is also impulsive, so will, for example, walk into the kitchen and just start splashing in the sink, or go to the bathroom and pump all the soap out. For this reason, every room in our house has some kind of lock on it. Other than the main family room, the only room Moe has free access to is his room.

 

Moe doesn’t really play and it is hard to keep him engaged in an activity for more than a few minutes. We are constantly exhausted with his energy, but he is usually well behaved when we are out. This can be stressful too, but we are generally able to do things like go out to a meal as a family. When we are home, however, Moe gets bored, and that boredom often manifests itself in impulsive or hyperactive behaviors, like running up and down the hall, crashing into walls, or climbing. I had no idea that “bouncing off the walls” and “climbing the walls” could be taken so literally.

 

Moe also has trouble sleeping, although thankfully that has gotten much better because of medications. For many years, however, Moe had serious trouble falling and staying asleep, even with melatonin.

 

Connor:

I’ve been putting off this topic because I don’t like thinking or writing about behavior. It brings back fresh, painful memories that I’d rather keep buried, not that they’re ever very far away from my conscious thought.

 

Beginning at age 3, Connor had challenges with aggression. I can’t even write it in a straight-forward manner. Let me try again. At age 3, Connor became aggressive. His aggression was infrequent at home, but was very frequent in the daycare, and later, the school setting with peers. He had no ability to handle his frustration and would immediately hit, push, or kick another child that did or said anything that made him angry or upset. Over time, the aggression became a regular occurrence, resulting in him being kicked out of three different daycares and two summer camps. Can I blame them? No, I suppose not. But I do wish they had a better staffing ratio to actually serve children with disabilities like they say they’ll do.

 

There were no services available to us. None. I even called Easter Seals and was flatly denied because they would not serve a child with a history of aggression. The only alternative was a special needs daycare that cost just over $1,000 a month. We scraped by. I wondered constantly how other people manage in these situations when they simply don’t have the means to shell out that kind of money.

 

With maturity and medication, we eventually got the aggression under control. But it took years; painful, guilt-ridden, gut-wrenching years. Between the guilt of not being able to make my child stop hurting others, and the terrible knowledge that he couldn’t control it and was constantly labeled the “bad” child, we all suffered.

 

And that’s all I have to say about that.

 

There are other behaviors to mention. There was and still is a lot of scripting. TV shows, movies, commercials, etc., he repeats lines that appeal to him for whatever reason. If I ask him why he does it, he can only tell me that it’s because he likes to do it. Fair enough. It’s mildly annoying, but livable. Sometimes it’s even rather funny when he tells me I should buy Oxi-Clean so we’ll have whiter whites, or begins singing the good neighbor/State Farm song at just the right time.

 

The other major behavior is arguing. Connor tends to argue or debate almost anything. Sometimes it’s from a desire to better understand the request, but other times it’s a desire to have control over the situation. The desire for control sometimes stems from anxiety, but not always. This is the one behavior I understand the most because I’m very similar. It’s difficult to articulate, but the best way to put it is when I “comply” with a request or demand, it’s like a little piece of me was taken away. Connor isn’t able to articulate it, or even explain why he does it, but that’s my best guess as to what’s behind that behavior.

 

Last, but not least, is sleep. He’s always had sleep issues and still does. We use Melatonin, but there are still many nights that he simply can’t fall asleep. We’ve developed a routine where he must stay in his room, but doesn’t have to sleep (because we certainly can’t make him). Often he’ll pull out one of his Minecraft books and read, and that’s okay with us.

 

Next week we’ll return and cover the topics of independent skills and school. Feel free to write about your child and link your post in the comments.

Just A Short Delay

Sorry guys, I’ve been sick this week. The series will resume tomorrow.

I feel kind of bad that you came here just to read this, so here’s a picture of a puffin.

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Two Children, One Spectrum: Sensory Issues

Posted on

two children part 4

 

Welcome to part 4 in our series about two children on the autism spectrum. If you’ve missed the previous posts in the series, you can get caught up here:

 

Part 1: Two Children, One Spectrum: A New Series

Part 2: Two Children, One Spectrum: Communication

Part 3: Two Children, One Spectrum: Feeding Issues

 

This week Jen, from Anybody Want a Peanut, and I will be talking about sensory issues that our boys have had.

 

Moe:

Moe is a sensory seeker. Even as a baby, he would stare at ceiling fans and would be calmed with white noise or even a loud hairdryer. (Of course, many babies are.) Around the time he was diagnosed at age 2, Moe would spin a lot and stare at lights. We had a toy, the Incrediblock, where the top would spin when he pressed a button. He would play with that for 45 minutes at a time. He would stim on any toy with sounds and lights for a long time. Of course at the time, we didn’t call it “stimming.” We just thought we were lucky to have such a focused kid! And we were, but we also didn’t recognize that this was something that could have bigger implications.

 

Today, Moe swings, jumps and climbs constantly, craving whatever sensory input he can find. He will literally bounce off the walls running from one end of the hall to the other, crashing at each end. He loves water, which can be both calming or stimulating depending on his mood. Moe is pretty good about requesting sensory input, but the line between “want” and “need” can be blurry. Moe loves the iPad and TV (two of the only activities he’ll do independently), and he’d have those, plus a noisy toy all going at once if I let him. But he can also get overstimulated (and drive the rest of us mad) so it is a fine balance.

 

Moe almost always has a chewy around his neck, usually a bandana with a knot in the middle—a great suggestion from Moe’s first, and still our favorite, Occupational Therapist. I’d suggest it for any kid who chews on his clothes. Everything goes in his mouth, from paper to dirt, and as we’ve already discussed, great food! I think the fact that he likes strong flavors has to do with his sensory processing (though I suppose that’s probably true of everyone).

 

The plus side of having a sensory seeker is that he is also a kid who likes to snuggle and hold hands. Some of my favorite times are when we are on the couch, watching TV, and he’ll lace his fingers between mine. He likes his feet, knees and head squeezed, wiggles into tight spaces, and although we’ve never done a strict brushing  protocol, he does enjoy that kind of input.

 

 

Connor:

Connor is interesting when it comes to sensory issues. When he was smaller, he screamed at the sound of the lawnmower or hairdryer. He would often become overwhelmed in crowded situations where there were too many people and too much sound. He also hated, and still hates. to get his hands dirty.

 

With time and maturity, he’s much less sensitive to crowds and noises, and I can dry my hair without a screaming fit from the next room. He is still a sensory seeker though, when it comes to physical input. He is always on the go, and frequently spins, climbs, and tumbles to get the input he needs.

 

His physical sensory issues are most noticeable when he’s sitting still to do his daily reading. He’ll frequently ask me to rub his leg while he reads because it give him the pressure he needs to keep from squirming around constantly. Electronics tend to be a calming focal point for him. He can watch TV, play on the iPad, or play Minecraft on the computer and lose himself for hours.

 

On Thursday, December 11th, we’ll be back with the next topic in the series: behavior. Feel free to write about your child and link up in the comments.

The Twelve Days of Autistic Christmas

Posted on

This was originally posted last December, but it seems like a good time to dust it off for the holidays!

 

The Twelve Days of Autistic Christmas

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