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United Airlines, Autism, and Discrimination

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Eggs can be so mean.

Eggs can be so mean.

 

For days now the dominant story in my feed is about the family  who was escorted off a United Airlines flight because their autistic daughter was perceived as a potential threat to passenger safety. The family is now suing the airline for discrimination.

 

I’m sick of reading about this, mostly because everybody has an opinion they want to share. Was it discrimination? Was the mom being too demanding? Who’s to blame?

 

Who cares? If you weren’t there to hear the 30-minute discussion between the mother and the flight attendant, then your opinion is pointless. If you aren’t an autistic person, or the parent of an autistic person, then your opinion is pointless.

 

Don’t despair! There are LOTS of newsworthy things to ponder and pontificate about. To make it easy, I thought I’d make a list of things that would make for great conversations about autism:

 

1. You could talk about all the fantastic autistic people you work with at your job.

 

2. You could talk about all the excellent supported living options available for disabled people.

 

3.  You could talk about your favorite autistic authors and poets.

 

4. You could talk about the great work your autistic community leaders are doing in your area.

 

5. You could talk about how much they celebrate diversity at your child’s school, and how diligently they educate ALL the children about different abilities.

 

6. You can talk about the insight you’ve gained about disability rights and equality from your autistic friends.

 

7.  You can talk about how your local police and fire departments have special training to support autistic people. As a bonus, you can talk about how well they support people with mental illness.

 

8.  You can talk about the neighborhood watch you created that pays particular attention to the fact that one of the neighborhood children is autistic and has wandered on a few occasions.

 

9.  You could talk about your son or daughter’s autistic friends that hang out at your house all the time.

 

10.  You could talk about all the times you’ve offered support to friends with autistic children; your offers of babysitting, friendship, or just a friendly ear.

 

If you can’t talk about these topics because they don’t exist, then maybe that’s a great place to start a conversation about autism. Or perhaps exploring some of these options will give you more insight into disability and discrimination. Or maybe you’re a white male and already have a lot of knowledge and opinions about discrimination. That’s great! We definitely don’t have enough white men talking about discrimination. Or women’s reproductive rights, for that matter.

 

Either way, perhaps making sweeping assumptions about an incident that just lends a negative stereotype to autism families only really serves in taking away attention from more pressing issues.

 

Issues like autistic children being bullied at higher rates than non-disabled children.

 

Issues like family supports that are terribly lacking in many communities.

 

Issues like higher rates of depression among autistic people.

 

Issues like aging out of support services.

 

If you really want to talk about autism and discrimination, contact me. Better yet, contact one of the many autistic bloggers who write about this topic.

 

You know who they are, right?

 

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10 Things Autism Families Want Teachers to Know

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Parents of autistic children want the same things other parents want for their typically developing children. We want our kids to learn, grow, and be nurtured in a quality school with good teachers. We also want our children to have the supports necessary to give them equal footing (to the extent possible) in the classroom.

 

Although there are federal and state laws in place to guarantee the rights of our children to receive free appropriate education in the least restrictive environment, most people would be surprised to know how much support varies from one school district to another.

 

While we hammer out the details of the IEP for our kids each year, we know the truth is that success often hinges on how capable and willing the teacher is to teaching our children in a way that respects their differences.

 

Special needs parents talk to each other a LOT, and there are some universal truths that we want teachers to know.

 

1. We don’t punish our child when we he gets a math problem wrong. Please don’t punish him for making mistakes with social skills and behavior. Help him learn those skills in a positive way, not a punitive way.

 

2. Just because you’ve heard of Temple Grandin or John Elder Robison doesn’t mean you know everything you need to know about autism. Parents can offer a wealth of knowledge and resources, so try and be receptive.

 

3. I know you’re very busy managing the needs of all the children in your class. I realize that my child’s needs are sometimes greater than those of other children. If you communicate with me frequently, I can help you make things more manageable.

 

4. Behavior is communication. Instead of reacting, take a moment and figure out what is being communicated by the behavior.

 

5. If you feel the need to tell me that my child argues with you or speaks to you like you’re equals, then you don’t know enough about autism yet. Ditto if you tell me my child was playing in the bathroom sink.

 

6. Read the IEP and behavior plan and follow them. Parents agonize over getting the supports right for our children and we don’t appreciate IEP violations. Neither do your administrators.

 

7. Try and remember that we are utterly exhausted and often feel like a giant, exposed nerve. We know we shouldn’t have to fight to get our kids the supports they need in school, yet we end up doing it year after year.

 

8. We know the value of a good teacher more than anyone, and we will bring you gifts throughout the year to keep you happy.

 

9. We also know pretty quickly if we’re dealing with a teacher that isn’t inclined to do more than absolutely necessary to help our child learn. It will be a long, unpleasant year for you.

 

10. Our children are much more sensitive and aware than you may think they are. We would really appreciate it if you can help them feel accepted and part of the group, instead of different.

 .

There are so many talented, caring teachers out there, but there are just as many who aren’t as knowledgeable about autism and special needs as they could be. Parents want to work with you to make it a successful year. A big part of that is respecting our child’s differences and understanding that they don’t have to be like everyone else to be valued.

 

Make no mistake, there is a lot of effort and learning involved in supporting our kids. But most parents will make it worth your while by plying you with coffee, cookies, and Target gift cards.

 

My kid was arguing with another student in class and instead of doling out punishment you distracted him and redirected him to something else? I really hope you like brownies.

 

If parents and teachers engage in a partnership of learning, we can help make every year successful for our kids. Remember that they’re working hard just to get through the day and they need to trust that you will help support them. We need to trust that, too.

 

All Children Can Learn

Two Children, One Spectrum: Social Skills

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two children part 9

 

I hope everyone had a great holiday season and found the time for some rest. I guess I wasn’t ready for the holiday break to be over, because I’m a week late in getting back to this!

 

Today is the last topical post in the series, and next week we will have a final wrap-up post.  If you’ve missed any part of the series, you can find all previous posts on the tab at the top of the page. Today Jen, from Anybody Want a Peanut, and I are discussing social skills.

 

Connor:

Social skills are really damn hard. They always have been for Connor. Hell, they’re hard for me. But because of the ADHD, he is very outgoing and always looking to play and interact in some way. Unfortunately, he’s always had a difficult time getting attention from peers in appropriate ways.

 

Although he’s been attending a weekly social skills play group for five years, the skills are slow to acquire. It takes so much practice to generalize the skills to the “real world.” He is so great at being friendly and asking others to play. Things become challenging when the other child wants to do something different from what Connor wants to do. He doesn’t get mad, he just doesn’t understand the give-and-take of friendship. He’s not yet learned the concept of reciprocity. Sometimes I remind him to show interest in his friends by asking them questions like, “What did you get for Christmas?” or “What’s your favorite movie?”

 

He’s just not there yet. But I see him growing and maturing and he is getting closer.

 

Another challenge in playing with peers is that he gets upset if he isn’t winning. Whether it’s playing ball or a game, he will often get upset or, worse, resort to cheating to win. We work at home on being gracious when someone beats you at a game, but it’s definitely proving a hard concept to master. Worse, when he does win, the self-congratulatory procession is excruciating. He screams out, “I WIIIIIIIIN!!!” He then does a victory dance, a few laps around the living room, and sometimes a cartwheel or two.

 

Yes, there are challenges. But more importantly, there are successes. Connor is open to every kid he meets and will play with anyone. He’s also drawn to smaller children and children with disabilities (kids in wheelchairs or on crutches). He’s almost always happy and smiling, and no matter how many times he’s been in trouble for some infraction, he keeps going back and trying again. That’s the quality I admire most about my boy, he doesn’t give up.

 

In fact, the other morning I dropped him off at the all-day after-school program and had to run home and come back because I’d forgotten something.  When I arrived I was surprised to find him sitting next to Aiden, playing his DS.

 

We’ve been hearing about Aiden for two years. “Aiden’s mean to me! Aiden pushed me! I can’t stand that Aiden kid!”

 

Since I know it takes two to tango, and my kiddo is no innocent when it comes to disagreements, I’ve continuously advised him to just stay away from Aiden. So this morning was quite a shock to see them together.

 

“You guys getting along?” I asked.

 

“YES! And I finally got a DS for Christmas,” Aiden replied.

 

“Yeah, now we can trade games on days when we can bring our DS,” Connor chirped.

 

I was content as I drove to work this morning and thought about the trial-and-error that is friendship. It occurred to me that, although there are challenges, it’s a learning process for all the kids, not just mine.

 

Moe:

Moe likes other people but doesn’t know how to interact. When he gets excited, he can be aggressive so he doesn’t get a lot of opportunity to just be with other kids. He doesn’t play games, and tends to just grab things. With one on one support, he will play simple games like rolling a ball back and forth.

 

He likes interaction, though, so this is something we struggle with a lot. How do we give him appropriate opportunities to interact with the world while keeping him, others, and property safe?

 

Join us next week as we wrap up the series with our thoughts, fears, and hopes for the future.

Two Children, One Spectrum: Medication

two children part 8

 

This is part 8 in a series about two children on the autism spectrum. You can read the rest of the series by clicking here.  Today Jen, from Anybody Want a Peanut, and I will be talking about the topic of medication.

 

Moe:

About a year ago, we had several false-starts with medications to try to help with some impulsivity and aggression, as well as sleep. Melatonin had stopped working even in pretty high doses, and Moe was both having trouble falling asleep and waking several times a night. We believed this was getting in the way of his ability to learn, and the whole family was struggling. We hoped better sleep would also have positive impact on behavior and allow him to possibly attend school and be safe around his sister. We started with Tenex, and eventually tried Clonidine and Intuniv (I may have that order wrong). All of these had initial positive effects, but after a couple of weeks seemed to make things much worse. Moe was actively aggressive in a way we had never seen and we stopped the medications. I swore never again and we took several months off.

 

But earlier this year, around the time Moe’s back molars came in, he started having serious aggressive and self-injurious behaviors. When he started banging his head so hard he gave himself large bumps on his forehead, we knew something had to be done. And even when the teething pain stopped, the behaviors continued. We found a new, much more knowledgeable doctor, and eventually agreed to try Risperidone, which has helped tremendously. Although we still deal with aggressive behaviors, they are greatly reduced and the SIBs have all but disappeared. This class of drug, however, can have serious side effects so we watch very closely.

 

Risperdal has also helped with sleep although we do still have to give melatonin a few times a week. Moe still has some aggression and impulsivity that we track for patterns. He has a lot of hyperactive behaviors, especially late in the day, but want to address this more with activity and exercise before we try different medication.

We do not use other biomedical or dietary interventions with Moe. We have so much to track and manage already, and to us, the evidence is not strong enough to add another level of complexity to the mix.

 

 

Connor:

Connor has been on medication for ADHD since he was 4 years old. While I understand that medication is a touchy subject for many people, and it was an incredibly difficult decision for us to make, his quality of life was impacted enough for us to pursue this option.

 

His attention-span is so short and he has extreme difficulty paying attention and following along in class. The ADHD meds have helped him a great deal, although when they wear off he is almost more hyper than he was to begin with. That’s known as rebound, and it makes for very tense homework sessions in the evenings. The alternative is even worse, because it would mean that he couldn’t get through the school day. What works best for Connor currently is an extended-release med in the morning and a shorter acting med in the early afternoon.

 

In addition to ADHD meds, he also began taking a medication to help curb the aggression. Risperdal was ineffective, and we worked with his doctor until we found one that worked for him, which is Lamictal. It’s generally a medication for seizures, but is used off-label for aggression. It seems to help give him the ability to pause and consider his actions rather than just instinctually lashing out when upset. It has made a huge difference in his behavior at school and his ability to get along with other kids.

 

Of course, medication is a very personal decision to be made together with your child’s physician. Usually medication isn’t the only approach that people use. For instance, Connor goes to a social skills playgroup every week, and has for years. They help build up skills in a group setting, teaching them how to understand and express their feelings in appropriate ways, as well as many other skills regarding making friends, having conversations, taking turns, etc.

 

We hope you’re enjoying the series and finding it worthwhile to learn about how two children on the spectrum can be so unique. We’ll be back next Tuesday with the final topic before our wrap-up, which will be about social skills. 

 

Happy Holidays!

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.

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