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Category Archives: Spectrum/Parenting blogs

Dear Reader

Dear Reader

Dear Reader,

 

Or should I say, friend? If not friend then surely fellow human, at the bare minimum. Just know that you are more than just a reader of words. You are a fellow soul who found, perhaps, at least some enjoyment from the stories I’ve shared with you.

 

My sincere goal was to share moments from our lives as they intersect with autism and ADHD, and maybe, just MAYBE someone else might find a laugh, or information that would be helpful in their lives. I wanted to show autism in a different light; one that finds laughter and joy in the chaos, one that is not doom and despair, but simply new challenges to overcome with some laugher along the way.

 

It never came to mind to discuss our race, religion, or cultural backgrounds. It was never pertinent to the story. But I tell you now, Dear Reader, that my family is biracial. The particulars  don’t matter, of course, just that we are. The stories you’ve read about Connor, they are about a boy with two races.

 

And so I ask a favor of you now, Dear Reader. If anything I wrote made you laugh, or cry, or look at someone or something in a new light, please allow me this one favor of you. Regardless of how you chose to vote in this election, please reach out and call your state representatives about the President-elect’s appointment of Steve Bannon as his chief of strategy. Please call on your senator or representative to condemn the appointment of a known white nationalist and bigot. Please do this for children like mine, who deserve to have public leaders that respect and celebrate the wonderful diversity of America; diversity that also includes disabilities.

 

The following link is a site with a call script, for those who aren’t sure exactly what to say when calling their government officials. You can also just speak from your heart, as long as your voice is heard.

 

And THIS is the link to a site where you can look up your state’s elected officials.

 

Thank you again, Dear Reader, for spending some of your time here. I think you know me enough by know to know I wouldn’t ask this of you if I didn’t feel it was frighteningly important. So please, share this with others who might also lend a voice.

 

Those who do not share my opinions, I wish you the best on your journey. There is no ill will here, none given, and none taken.

 

All my gratitude,

 

Flannery Sullivan

We Rise

I’m still here.
Are you?

*********

We Rise

Why I’m Lucky To Have A Special Needs Family

Last night I was sitting outside on the porch, enjoying the fresh air and only slightly cool breeze that is a Texas winter, and had a rare, contented moment of thinking, “I love my family. I am SO lucky.”

 

  

For the ordinary person, that wouldn’t be an unusual feeling to have, but having a child with special needs means that sentiment doesn’t fit into society’s narrative of what it’s like to be a special needs family. I should love and be devoted to my family, but I shouldn’t necessarily consider myself lucky.

 

“That’s not true,” you say. “I wouldn’t be surprised to hear someone say they felt lucky in their special needs family.”

 

But way deep down, you know there’s that tiny, dark place where you think, “I feel so lucky to have “healthy” children. I am so grateful they don’t have a disability.” Because to many people, someone with a disability is an “other.” Her child is different from my child.

 

But I tell you, I am lucky. To an extent, most of us special needs families are. This isn’t the part where I say, “We’re not lucky because of the disability, we’re lucky in spite of it.”

 

And I’m not going to run through all the valid attributions of “being lucky to have my child alive” or “being lucky to have a child at all, when many can’t”.

 

What I’m referring to is the unavoidable and essential ability to view things through someone else’s eyes (to the extent that you can). With autism, you must learn very early on how to ferret out the antecedent to a meltdown, or you won’t know how to avoid future meltdowns. Was it a sensory response? Was he overstimulated? Is he coming down with something? Are his clothes uncomfortable? Did the change of routine cause an anxiety overload? You think of little else for days or weeks on end, not because you want to, but because you become obsessed with trying to understand your child.

 

When you’ve finally uncovered that the sound of your hairdryer is causing your child major anxiety, you set about changing the environment so your child won’t be caused distress. Most of us will close doors and get our child noise-canceling earphones. We know that avoiding hairdryers for the rest of their lives isn’t reasonable, but making small, doable changes is reasonable, and you are able relieved to ease your child’s pain by just that small accommodation.

 

In short (lie; this is terribly verbose), you learn how to critically examine cause and effect, and analyze the interactions of different experiences on mood and behavior. Because you have to.

 

This brings me to my hypothesis: most “typical” people don’t have to think in those terms on a constant basis. I would venture that the “average” person goes about their day, giving little thought to whether the sound their shoes make on the tile floor is bothersome to someone, or whether they’ve properly prepared to use their hairdryer.

 

The reason this acquired necessity makes us lucky is because it gives us an enhanced way of viewing the world. You many not understand why that enhancement is as valuable as it is, so I’ll try to illustrate it.

 

Imagine if you worked at a convenience store, and one evening a young ethnic man comes in and holds a gun to your head, demanding all the money you have in the cash register.

 

Now, some of you would try to calmly do as he asks, hoping and praying that he just doesn’t kill you. Some of you might actually try to fight him, or grab for a weapon behind the counter. Either way, no matter which way you responded, you would probably feel angry and want him put in prison for a long time. He’s a criminal. He’s a scumbag who steals from hardworking people instead of getting a job.

 

And maybe he is those things. But how many people would take the step beyond to wonder what conditions came together to make up this man’s life, leading him to commit those crimes? And to have the wherewithal to know that asking those questions, caring about those possible conditions enough to give them careful thought, doesn’t mean you’re excusing the behavior, or the need for a consequence. On the contrary, having those thoughts leads to discussions. And discussions lead to careful inquiry about important circumstances that shape people’s lives, like poverty, racism, classism, disability, gender identification, sexuality, family dynamics, community, and health resources.

 

The next step in this process is to consider: if we know that human beings growing up in certain environments are more likely to have some kind of negative outcome, which ultimately affects society as a whole, then how do we begin making changes right now that will create positive long-term effects in our country? With the knowledge of how conditions shape human behavior, do we reconsider how we approach the big topics we wrestle with as a nation, like wage equality, access to women’s health services, investing in impoverished communities, mental health services, and access to higher education? Do we look at the utter failure of our prison systems to “rehabilitate” criminals, as evidenced by the high rate of recidivism? Do we think about whether spending federal dollars upfront to avoid future criminal behavior by investing in people and their environments, rather than spending it to house them endlessly in prisons that are perpetually bursting at the seams? Do we then apply this advanced level of critical thinking to the choices we make politically?

 

 

As exhausting as it may be to analyze things to this extent, it’s the very reason I feel lucky to have a special needs family. The training I got from my son has given me a lot more anxiety, that’s true. But it’s also given me the ability to think far ahead about the cause and effect of conditions on human beings. And it’s given me the invaluable knowledge that it’s essential to our long-term survival to see the kinds of changes needed to elevate us as a species, rather than remaining unconcerned for those “other” people until they come to us to commit a crime.

 

I am lucky. My life and my thoughts are infinitely more challenging and complex, and it’s worth it. If it wasn’t for my son, maybe I would be someone who thinks we need more guns, more prisons, more walls, more police, more us vs. them.

 

Instead, I’m someone who wants more access to healthcare, more education about diversity, more community centers, more access to housing for the homeless, more benefits for veterans, more mental health resources, more kindness, more love — because I know that these are the kinds of supports that shape positive outcomes that ultimately affect all of us.

 

In this season of holidays and politics, I hope you all find yourself with loved ones that make you feel lucky, while you also consider (perhaps a little differently) what each of the politicians want us to have more of in our country and communities.

 

  
* It’s possible I only followed the first part of these instructions. 

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

How I Became a POW in the Bedtime Wars

As I look backward through the smudged glass of my memory, I see very clearly that bedtime has always been a problem. For a while there were night terrors; countless hours where I sat with my back against his bedroom door, crying silent tears as I watched him wander his room aimlessly, screaming and crying for no apparent reason.

 

As he grew, we went through a phase where he ended up in our bedroom every single night, usually sometime between midnight and 5am. And always, always he appeared at my side of the bed, inches from my face, with an exceptionally loud, creepy whisper, “Mommy. Moooooommy!” Sitting bolt upright in panic, I would scoot over to make room for him in the bed. Fearing I would eventually have a heart attack during one of his middle-of-the-night creeper episodes, we helped him transition to having his very own Buzz Lightyear sleeping bag in the corner of our room, where he could come in quietly during the night and bed down.

 

Recently I realized that he’d not been in to sleep in our room for almost two years. Somewhere along the way we slipped into a normal, stable sleeping pattern. Things were humming along and life was slightly less complicated for a while.

 

But now Connor is approaching the age of 10, and things have changed again at bedtime. Sure, I could blame the autism or the ADHD. I mean, I’m sure those things don’t help to make bedtime easier. But somehow I think this has more to do with the slow, steady progress toward becoming a pre-teen, and I’m feeling my sanity start to wither and shrink, like an old prune.

 

It should be a fairly simple routine. At about 8:15 p.m., either my husband or I tell Connor that it’s time to brush his teeth and get ready for bed. In response, we generally get a very sullen “okay.” But then…he continues playing on the iPad, or on his computer, or watching a TV show. I stand there and watch, and watch, and watch…

 

And then we tell him again. And again.

 

He ambles off to chew on his toothbrush as he dances around in front of the mirror, flexing imaginary muscles and making faces at himself. The Husband and I are distracted with bills or laundry or kitchen clean-up. Eventually we notice that the boy never came back out. I go off to look for him and find him on my bed, watching TV.

 

“What are you doing?!”

 

“Watching TV.”

 

Did I really expect a different answer?

 

“I told you to go brush and get ready for bed. Why are you watching TV? I am SO mad!”

 

“Wait, why are you mad? I’m just watching The Amazing World of Gumball?”

 

“Because you’re supposed to go to BED.”

 

“Oh. Can I have just a few more minutes?”

 

“NO! You just took a few more minutes! Let’s go right now.”

 

If I don’t grab the remote and turn off the TV, I can be assured that I will stand there for at least 3 minutes while he fondles it slowly, turning it over, looking around leisurely for the off button, dragging out the seconds so he can see what marvelous shenanigans that stupid blue rabbit gets himself into.

 

So I turn it off and usher him out of my room and toward his room. But he stops, saying “Wait, I forgot something!” And he runs off to grab his paper ninja star, or his Diary of a Wimpy Kid book, or a football.

 

“You don’t need that for bed,” I tell him. And I somehow get him into his own room.

 

As I collapse on the couch, I hear his door open. “Don’t mind me, I just need another drink of water.”

 

Motherfucking fuck!

 

“Get your water and GO.”

 

But, you see, it takes a few minutes to jump up and sit on the counter, sift through all the cups to find just the right one, and then get the water out and pour it, ever so slowly, into the cup. During the filling of the cup, I’m certain that three more hairs have gone gray and I’m close to having an embolism.

 

Boromir knows...

Boromir knows…

 

I begin the litany of threats regarding the future availability of electronic devices and he starts walking toward his room, tossing over his shoulder that I’m “mean” and “not fair.”

 

Since I can’t stop myself from daydreaming about running away and living in the wilderness, enveloped by peace and quiet and filth, I turn on Mick Dodge. My soul needs to be soothed by visions of the rainforest.

 

Then I hear noises coming from the boy’s room. I open the door to find him playing with trains on the track he has just constructed across his bedroom floor. I can tell by the screaming in my head that I’m beaten. He has squashed any authority or parenting ability I ever thought I had. His stamina is truly a wonder to behold. Finally I stammer, “You don’t have to sleep, but you have to stay in your room. Do not come out.”

 

Twenty minutes later I’m wondering how Mick will find out who’s been stealing his tree stashes, when the boy appears before me again.

 

“Mom, I got my Newton’s cradle all tangled up, can you fix it?” He holds up the cradle which is, indeed, tangled into a jumble of string and silver balls.

 

Please God, strike me with lightening right now. Do it. End this farce.

 

IMG_4122

 

“I’m not fixing anything tonight. You are supposed to be in bed, not playing with that. I will deal with it tomorrow because right now I don’t give a hot damn about fixing it!”

 

“Ummmmmm, you said ‘damn’! And why did you say ‘hot’? Why is it a ‘hot’ damn?”

 

I narrow my eyes to a slit and hiss, “Get. Out. Now.”

 

He storms off, slams his door, and then begins wailing about the Newton’s cradle.

 

“I NEED IT FIXED! SANTA GAVE IT TO ME FOR CHRISTMAS, IT MUST BE FIXED. WHY WON’T YOU JUST FIX IT?!”

 

My left eye is twitching, I can feel it. There’s an underlying panic inside that I barely keep at bay, but it threatens to rear up and take over. If I can’t get an almost-ten-year-old to bed, what the hell am I going to do when he’s a teenager?

 

Maybe Mick Dodge will let me have a little space in the rainforest, far away from Newton’s goddamn cradle and the sounds of a growing boy railing against the injustice of bedtime.

 

But probably I’ll still be here, with a full head of gray hair and a constant eye twitch. Oh yeah, and a tangled mess of string and metal balls, too.

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!

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