“scream rooms” and shock therapy being used on Autistic children: Do you know what your school’s doing?

scream rooms autism
What equates a torture device? Something that makes someone go crazy? I’ve come upon two organizations in the last few months who use torture to get what they want (and really in the end they aren’t getting what they want). You may think this doesn’t happen any more, it’s 2014 for goodness sake. Well, that’s what I say, except, it is real, and although we feel we’re such a progressive society, there still exists this idea that you can somehow work the Autism out of a person.

What if your child was confined in this?
scream room in Deer Valley (Phoenix) schools

I hope if you’re a parent of Autism you continue to read this, so you can be aware and advocate for your child. If you’re not a parent of Autism, I hope you read on because we need you to be another voice for our children, our teens, and adults who aren’t being treated as “typical” human beings.

The photo above was the latest shock, a “scream room” in the Deer Valley public school district in Phoenix, AZ. I was livid when I saw the photo and read the article. A padded, completely closed-off cell in a public school? My blood boiled, feeling angry, scared for the children who must have been frightened out of their minds when placed in an isolated space. I’m claustrophobic, and being in there would drive me absolutely nuts, and it would be a million times worse for an Autistic child. I can’t even wrap my mind around it.

Just for some perspective, we used to put Jeremiah in his room when he was having a really difficult time. He was able to calm down in his space. I hadn’t put him in there in a while, but he was having behaviors I couldn’t handle, so I wanted him to calm and settle in his room.

This time it wasn’t the same. We’ve done it twice and won’t do it again. Why? He was in there less than three minutes and he went out of his mind both times. He screams often, happy screams, screams when he’s mad, but this was a whole new level, he was furious. He screamed up to the moment I opened his door, then he shut himself off from the world, this faraway look in his eyes. Some with special needs may have this look, but Jeremiah doesn’t, so it scared me. I held him, but he climbed out of my arms and just sat there on the couch, staring. Why did I even do it a second time? I’m human. I wish I wasn’t. If being in his room with toys, windows, a comfortable bed affected Jeremiah so negatively when he was in a disregulated state, what would it be like for an Autistic child to be placed in a “scream room”?

In 2012, after this report came out about the “scream room” in Phoenix, Arizona, house bill 2476 was passed, in part it says, “Beginning in school year of 2013-2014, disciplinary policies for the confinement of pupils left alone in an enclosed space. These policies shall include the following:

  1. The appropriate criteria for confinement,
  2. The size of the room in which the confinement will occur,
  3. The maximum number of minutes that the pupil will be physically prevented from exiting the room in which the confinement occurs,
  4. The method in which the pupil will be monitored by an adult who’s in close proximity to the room in which the confinement occurs and who is able to see and hear pupil at all times. (/An adult cannot see into the “scream rooms” in the Deer Valley school district./)
  5. A process for prior written parental consent before confinement is allowed for any pupil in the school district.

I’m not a professional at reading senate bills, but it seems to me that no criteria has been put in place, except that parental consent is required. The bill does not define the amount of time a child can be confined, nor the size of room the child can be restrained in. Autistic children hit themselves, pick at their bodies, pull their hair. This is called self-injurious behavior. This is cause for confinement under the house bill in Arizona.

I found another explanation of the house bill herewhich explains the school has permission to use confinement if the child poses harm to himself or others, even if a parent has NOT given prior consent. The administration then needs to notify the parents the day the confinement takes place.

In my opinion, which I stand strongly on, the use of a secluded room is unacceptable, it’s a cruel punishment that should never be implemented. Never.

In a February 2014 ABC news report by Angela M. Hill and Matthew Mosk, they say, “The Senate findings mirror those in a 2012 ABC News investigation which found that thousands of autistic and disabled schoolchildren had been injured and dozens died after being restrained by poorly trained teachers and school aides who tried to subdue them using at times unduly harsh techniques.”

The report also mentions the case of eight-year-old girl, who has “attention and hyperactivity disorders” from Minnesota who was closed in a room alone forty-four times in one year. This took place in spite of her parents and behavior consultant opposing the strategy.

A dismal eighteen states require parental notification when a child has been restrained in a school setting.

This video was released in 2012 of a teen boy named Andre, being shocked thirty-one times at the Judge Rotenburg Center (JRC) for developmentally disabled students. WARNING: This video is graphic, it may be disturbing to some and is not suitable for all audiences.

Why did the staff use shock therapy on Andre? Because he wouldn’t take his coat off. He had to wear someone else’s clothes that day, and was embarrassed, therefore insisted on wearing his coat, which the staff did not approve of. This “situation” took place in 2002, and went to trial in 2012.

Over at the Autistic Self Advocacy Network, Shain Neumeier says of the JRC trial, “After several more hours of jury deliberations the next day, the parties agreed to settle for an undisclosed amount of money…Ever since their clients signed onto this agreement, the defense attorneys have insisted that JRC and the three individual defendants were not liable, and have defended Andre’s treatment as reasonable. They went so far as to say they were glad that the tape was shown in court, allowing the jury to see that Andre was receiving proper treatment at JRC.”

I’m shocked, literally pained, and appalled by all of this. If this is happening in one school district or “center” it’s taking place in others. These are not isolated instances.
how does your school treat children w special needs

One message we should get from this is strong and clear, we have to constantly be advocates for our children, teens, and adults if they move on to day camps or other living arrangements. Whether it be at school, church, a therapy office, or daycare, we have to be aware of what’s being done to those with Autism. Don’t just call or email your school and ask if they use isolation rooms, scream rooms, or if they seclude children with special needs, take a tour of the school while children are in class. Ask questions. Talk with other parents of special needs children. Emails and phone calls won’t get you answers, you need to be present. Pick your child up sometimes, don’t only rely on the bus system. Talk with teachers, paraprofessionals, and aides. Know what everyone is doing with your child.

In response to these atrocities being used on people with special needs, some say, “But it worked for my child,” “It worked for me,”  or “I work with the special needs population and I’ve seen it make a difference.” I say for everyone it did help, it harmed several more. The question should be asked, “Would you do this with a typical child [or person]?” This question was brought to my attention by Heidi Lostracco on Speak for Yourself. I think the answer in these cases, with both “scream rooms” and shock therapy, would be a resounding, “NO!” And if it’s not okay for a typical child, it’s not okay for a child with special needs of any kind.

Please share this with others so everyone can be aware of what’s happening to children with special needs. They don’t have a voice, but you do.

What do you think of the implementation of “scream rooms”? What would you do if you found one in your child’s school? Would not signing a consent form be enough to ease your mind that your child wouldn’t be placed in one?

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Well Child Check Up…

In the post below, Ms. Ipockolypse says, “You would think the doctor’s office that diagnosed my son with ASD would know that we are not going to get him to stand still on the scale (though this went relatively well), or that we are not going to get him to stand with his back against the wall long enough to get his height.”
When I came across this wonderful explanation of what happens when you take your Autistic child to the doctor, I had tears (from laughter) springing from my eyes.
Although the reasons she wrote this aren’t worth chuckling about, it happens to many of us on this Autism journey, and how she portrays her experience is just laugh worthy. So enjoy.
Have you had a similar experience with your child in a doctors office or hospital? Why do you think it is that those who diagnose our child, or those who are in the medical field sometimes know less about Autism than we, the parents, do?

The Ipockolypse

I hate that doctor’s offices make me cry. Whether the doctor is delivering good news or bad news, before the appointment is over I am a ball of ugly crying in the corner.

My son finally had his 4 year well child check up. He is well over halfway through the age of four, but finally we have our appointment.

Of course, the first part of the appointment was an absolutely disaster. You would think the doctor’s office that diagnosed my son with ASD would know that we are not going to get him to stand still on the scale (though this went relatively well), or that we are not going to get him to stand with his back against the wall long enough to get his height. And taking his blood pressure… are you kidding me? This has never worked for my son, it’s not going to work now. And…

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great special ed teachers = priceless

great special ed teachers = priceless
There aren’t many things greater in life than knowing your child is in capable, caring, and safe hands when you drop them off at school. That feeling is multiplied exponentially when your child has special needs.

I know how wonderful Jeremiah’s preschool teacher (his aides are truly amazing also) is because I know what it takes to understand, help, befriend, and teach my son. I know how it can be daunting for others to simply watch Jeremiah and feed him snack. I know Ms. Gina goes far above what’s expected of her.

As school ended this past year, we met with Gina for a parent/teacher conference. During the conference, she said, “Since this will be Jeremiah’s third year in my class, I’m going to change my room around. It’ll be a challenge for me, but I’m going to do it.”

She knows Jeremiah is used to the room after being in her class for two years, but every year after the one coming up, he’ll be in a new environment. New teachers, new classrooms, and possibly new paraprofessinals*.

Even though it’s going to stretch Gina, because she likes the way her room is set up and never alters it’s basic layout, she’s doing this for Jeremiah. One child who’s in her class for three years. She cares that much about him, his development, and preparing him for his future.

I’m extremely grateful for our kids school,

for the principle who hires quality staff and promotes inclusion for special needs students, and for that staff who puts students needs first. The peace I feel when my child goes to school is unparalleled. Although he has special needs and is nonverbal, I’m confident he isn’t being abused, talked down to, thought less of, belittled, or placed in a corner. Having a a great special ed teacher is priceless.

*Jeremiah’s preschool is on an elementary school campus. His preschool is specifically for children with special needs and kids who are high risk. The elementary is a public school, which includes special needs children in the regular classrooms.

You can find out more about Jeremiah’s school in these posts:
Out of My Mind (I highly recommend everyone read this book)
What is Inclusion?

*Paraprofessionals, as defined by specialchildren.about.com: “A paraprofessional — often referred to as an aide — is a special-education worker who is not licensed to teach, but performs many duties both individually with students and organizationally in the classroom. Your child may be assigned a one-on-one paraprofessional as part of his or her IEP, or interact with a paraprofessional assigned to the classroom.”

Does your child have an awesome special ed teacher you’d love to brag about? What about their school? Does it make you feel at ease when you leave your child in capable hands?

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watch for clues: understanding your Autistic child

watch for clues- understanding your Autistic child
Jeremiah saw his pajamas laying on our bed, grabbed them and brought them to me. Someone who doesn’t know him or doesn’t spend time learning about him might say, “Oh, he wants to go to bed.” Another person might not have a clue what Jeremiah is doing, so they take his pjs and put them on the couch or away in a drawer.

Most parents know their kids and can read their cues, they know when they’re tired, hungry, want (or need) to go outside, but when your child is nonverbal the cues can be misconstrued. In giving me his pjs, Jeremiah was communicating he wanted them on. He likes the comfort they give him, warm and soft, but it was also getting close to bedtime and routine is very important to him. Was he ready for bed? Probably not, but he knew what came next in his routine.

Living in a nonverbal world, unable to communicate those desires, needs, feelings, and opinions can be extremely frustrating. As a child’s parent, care giver, teacher, or therapist we need to do our best to understand what that child is communicating.

Here are some situations that have come up with Jeremiah that some may not understand, and some have even taken us a while to clue into:

  • When Justin runs the water to give the kids a shower, Jeremiah walks into the bathroom and backs up to Justin, who is sitting on the edge of the tub. Jeremiah wants Dad to take his clothes off so he can get in the shower. Someone who isn’t aware of Jeremiah’s routines may have no idea what he wants.
  • You might have an Autistic child who’s intensely frightened of showers. Oh, that used to be Jeremiah, he went through a long phase of despising them. Whenever we turned the water on in the bathtub, he would cry and get so upset. It honestly took us a little while to connect the two, no point in mentioning exactly how long, it’s kind of embarrassing and why I’m writing this post. If a parent (clearing throat, us) wasn’t paying attention, they may not know why he was crying.
  • Jeremiah recently discovered he loves oranges. Yeah, kind of strange for a kid who has Sensory Processing Disorder and is extremely picky about the texture and taste of food. We give him as many oranges as he wants, but one day we got busy, as every family does, and when we went in the kitchen, we found this: oranges In his own nonverbal way he was saying quite clearly, “I would like some oranges people.” Yeah, we got it. A little late. Someone else might think he was only lining up the orange balls, because why in the world would a child who has Autism eat an orange???

Not all nonverbal communication is this clear, but we’re really lucky when it is. Here’s an example of one that wasn’t quite so concise:

  • One cool spring day, Jeremiah brought me his PECS picture to indicate he wanted to go outside, but he wasn’t able to. It was cold after some warm spring days, I had things to do inside and couldn’t go out with him. He was frustrated. He brought me the PECS picture again, and I said, “Not now, it’s too cold.” I put the picture on the counter, not on it’s usual velcro spot on the door to indicate, no really, I mean it, we’re not going outside. He then brought me his snack PECS picture. Okay, I was working, and would get it in like twenty seconds, but anyone who has a nonverbal Autistic child knows that twenty seconds is an eternity to that kiddo. I placed the snack PECS picture beside me on the desk and kindly asked him to wait. He put it in front of my face again and I said, “Wait.” He gave up and left, I soon followed and walked by the back door, the door to the backyard. There by the door lay both his PECS pictures for his snack and “outside”. I got his snack out, handed it to him, and he stood by the door. Mama got it. I also abandoned my project of the moment and allowed him to go outside. His smile was priceless. That smile when the ones he relies on most in his world “get it”. That feeling that he’s understood, heard, and cared for because he got what he really wanted.

It’s so important to be aware of your child as much as possible. There will be times when you aren’t attentive to their movements and expressions, but when you can, it will teach you so much about your child.

don't lose those moments you can build on

Give your child opportunities to engage in activities or eat foods you wouldn’t expect them too. Last fall, Jeremiah watched as his sister ate her almonds. Up to that point his diet consisted of gold-fish crackers, occasional fresh raspberries, and had just added gluten-free pancakes packed with supplements. I saw how interested he was so I placed a couple almonds in front of him, and HE ATE THEM, and more! Oh jeez, can you say breakthrough? Can you say excited?? People really have no idea how exciting our Autism lives can be. Thrilling when your child eats a new food, looks at a new toy, or gives someone a hug, or simply looks someone in the eyes. If I hadn’t been paying attention, I would have missed a huge opportunity.

Because Jeremiah was attentive to new foods, Justin saw him staring at some cheese on his plate, so he give him a Jeremiah-sized handful. Well, Jeremiah’s allergic to cheese, and we knew this. It causes so many issues with him, including, but not limited to, him losing skills when he eats it. Oh, I wasn’t happy, not one of those proud Mommy moments. In the days that followed we (and Jeremiah) paid dearly for that small handful of cheese.

I couldn’t keep quiet about it, so I mentioned it to Justin again, asking why he gave it to him. He gave an answer I really had to contemplate and is really a basis for part of this post. Justin said, “He was so interested in the cheese and I want him to be interested in other foods, so I gave it to him.” Then it made sense to me. I asked that he agree to NOT give Jeremiah cheese again, but that we would pay extra attention to foods he showed any interest in.

Another is boiled eggs. Yeah, really plain and weird texture. At first he just played with them. Our response was to keep them away from him because he would pop half of it in his mouth, pop it back out and place it back on our plate. One day Justin jumped at it, sliced that sucker up and Jeremiah ate it! Woo hoo!! He’s been eating them since.

It’s good to step a little out of “normal” sometimes.

Life can become so routine, we don’t try new things, they eat the same food, we aren’t able to go many places. I encourage you (this is even a post for myself) to try. Go. Do. Stretch yourself and your child a little. Don’t make them completely uncomfortable, but you can try taking them to the park, giving them a new food (with warning), or play with a new toy alongside them. You never know, maybe, just maybe.

If someone had told me a few months ago that Jeremiah would be eating eggs, oranges, and almonds today, I would’ve said they were crazy. They wouldn’t have been. But, if we hadn’t paid attention, and if we don’t continue to, we would lose those moments we could build on.

Are there things your child does that you don’t think someone else would understand? If your child is nonverbal how do they communicate with you? Do they use gestures or take you to what they need?

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are Autism behaviors annoying?

Are Autism behaviors annoying
An interesting conversation arose between me and a family member about Autism. I’m sure whether you are Autistic or have a child with Autism, you’ve had some interesting conversations yourself. This exchange began with me talking about my son, Jeremiah who is four-years-old, has Autism, and is nonverbal. I said, ”I had a dream that Jeremiah could write letters and say them.” Joan* responded, “I pray that every day, that he’d be able to do those things and more.” I said, “I would love for him to be able to communicate and not be irritated.” To which she added, “…and annoying.”

I interrupt this conversation to talk about this first point, “…annoying.”

(More was discussed beyond this, but I will save that for another post.) So, annoying, yes certain aspects of Autism are annoying, especially when the child can’t communicate. But heck, aren’t we all annoying at some point to everyone around us? Doesn’t something bother you about each person you know? Okay, probably not, but we each have our unique personalities and can, quite frankly, be annoying. I’m not, but hey, you need to work on your issues. 😉

Now, Joan wasn’t saying Jeremiah’s annoying in a mean way, she loves him, but she knows that when I’ve had it up to my eyebrows with everything in my life, including moments with Autism, she will watch the kids (she runs an in-home daycare) a little extra for me. She knows that some things Jeremiah does can bother others. He bothers her too, and she has a LONG fuse. But, I’d say 98% – 99% of Jeremiah’s “annoying” behaviors are the result of him not being able to communicate, coupled with his sensory needs.

Jeremiah’s a REALLY good kid other than he exhibits what we see as negative behaviors when he can’t communicate and when his sensory needs over or underwhelm him.

For example, when Jeremiah doesn’t have his PECS* card for “food” available, he opens the dishwasher to climb on the counter to get his snack. He doesn’t open anything else, he doesn’t make a mess, he simply gets out the goldfish, and is usually found out before he opens the package. Getting him off the counter is “annoying” to me because I have to lift him off the counter, and I have back problems, so it hurts, and doing this consistently on “bad” days, coupled with other behaviors, is hard. But, we can see that he’s climbing on the counter because he’s hungry (always) and wants to eat, but wasn’t able to communicate his need in a timely manner, if at all.
there is a purpose behind the Autistic persons behaviors

Another example would be when he screams (happy screams) at THE TOP OF HIS LUNGS when he’s inside the house. Can you say, “ANNOYING!!!?” Yeah, it is, to the extreme. Why is he screaming? We don’t know. I would bet it has something to do with sensory issues and communication, depending on the moment. Problem is, he doesn’t stop if you ask, he may for a moment, but he’ll do it again. So, he’s trying to communicate excitement, sharing that he likes something that’s going on, or a way he feels, he may like the way it tickles his throat, it may be his only way to say, “I’M RIGHT HERE PEOPLE, HEAR ME ROAR!!!” He’s a boy after all. 🙂

Those things that annoy some of us are our child’s way of saying something: they’re get excited when the sun is shining, they want to play at the playground you just passed by, flourescent lights irritate them, they hear humming in their ears, they’re saying “hi” (Jeremiah does this by hitting – we’re always teaching him to be gentle, but we need to acknowledge that he’s saying “hi”), and so much more.

Really so much of what I want for Jeremiah is based on two key things I’ve talked about here, I want him to be able to communicate and I want to help him with his sensory needs, or for him to know what to do for himself. And in the end, I want Jeremiah to be happy. That’s my desire for him.

In the beginning of my Autism trek, I was surrounded by people with more of a “poor us” mentality, parents want to “cure” their child, people who wanted to know how we could “fix” Jeremiah, it wasn’t so focused on the positive attributes of Autism.

I’ll be discussing more of that mentality next week, because the conversation I had with Joan moved into the area of “fixing” or “getting rid” of Autism.


*Names have been changed to protect privacy.

*PECS stands for Picture Communication Exchange System which uses photos as a way to communication.

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get the right response (Autism)

get the right response
People with Autism are intelligent, but sometimes as a parent of an Autistic child it can be difficult to see at times.

When we ask our children to do something and they don’t respond, it’s not a lack of intelligence, but the Autistic child’s brain taking time to process everything. Temple Grandin has said…

The Autistic brain doesn’t process verbal and visual cues at the same time.

When Jeremiah was younger, I talked to him in full sentences, I wanted to treat him just as we had our daughter and she was able to understand complete sentences. At some point, I realized he wasn’t processing what I was saying, so I shortened those longer phrases, if I wanted him to do something, I said, “Get off the table.”

Use short sentences ending in the action you want to take place.

Despite the change, I was still having trouble getting him to do what I asked. When Jeremiah was three-years-old, we had a Developmental Specialist and Speech Pathologist coming to the house to work with Jeremiah. They said many times kids (not specific to Autism necessarily) only hear the last one or two words you say, so they suggested saying, “Get down,” instead of , “Get off the [insert whatever your child constantly climbs on],” or “hands off,” when they’re, let’s say, hitting the t.v. instead of, “Stop hitting the t.v.”

keep it simpleWhen you say, “Stop hitting the t.v.,” your child may only be processing the last word, “Blah, blah, blah, t.v.” Whereas, with saying, “hands off,” they can begin to learn what you want them to do.

These short sentences don’t need to be used in all your communication with your child, only when you need them to do something specific. When they’ve done what you’re asking for a while, you can start using longer sentences and see how it works. Once in a while your child may ignore you, have difficulty processing, or not be focused, so you can occasionally go back to those one to two-word sentences.

Wait for your child to process what you said

When you ask your child to do something, wait for your child to process your words. Give them time to filter what you said. We don’t see, hear, or experience the world the way they do, and they have multiple sensory stimuli coming at them that a neurotypical person doesn’t notice. You can SLOWLY count to five or ten after you’ve given a direction and maybe that’s what they needed, more time to process what you said.

The Autism Site has a great article and video about how people with Autism process the auditory and visual at different times, thus creating confusion.

Move YOUR body

It’s also important to move YOUR body when you ask your child to do something. When your child is hitting something or someone, touching an item they’re not supposed to, climbing on a piece of furniture you don’t want them on, it doesn’t suffice to call across the room, “Get down!” or “Hands off!” you will need to move. If you don’t, your child won’t take you seriously.

I’m not saying you need to be overbearing and mean. Simply tell your child what you want him to do, in an authoritative, but kind voice as you move toward him. If you don’t move and you repeat your request over and over,

your child will sense you’re not serious and will continue the behavior.

Use hand-over-hand to teach your child

With kids who have Autism it often helps to teach them with hand-over-hand movements. This is not to be done in a controlling manner, or to keep their hands “quiet” when they are stimming or clapping. I feel it’s imperative we listen to Autistic adults, and many have been harmed by hand-over-hand teaching. Here’s an example from Julia at juststimming.com. Jess who writes Diary of a Mom also wrote about “quiet hands” here.

If your child doesn’t understand, or has difficulty following directions such as, “hands off,” when you’re asking her to stop touching the t.v., you can gently put your hands over hers, move them off the t.v. while giving the direction. Or, if your child is being rough with an animal, you can put your hands over theirs and pet the animal gently with their hands, while saying, “Be gentle,” or “Soft.” Be sure to use the same word each time.

Some of you may be saying, “But that’s not teaching my child manners.” You can use full sentences, pleases, and thank-yous in all other areas when speaking to your child, but when you want to teach your child basic instructions, it’s okay to skip the manners in those situations.

Be consistent

Parents of Autistic kids know how important consistency and routine are for their children, if not, you now know. 🙂 In teaching your child what’s expected, consistency is EXTREMELY important. I can’t emphasize this enough. If you let up and don’t make your child do the things you’ve deemed important (making sure to take Autism and sensory needs into consideration), your child will revert back to what makes them feel more comfortable; walking around the house with food, jumping on furniture, hitting things.

I’m aware of the need for consistency in our home because when we go without it, Jeremiah reverts to old behaviors. Whenever Jeremiah is sick, he takes steps backwards, and this is to be expected. Whenever I’m sick and unable to keep up, he reverts to old behaviors. It makes sense, but reitterates the need for consistency. We get tired, family members get sick, we go on vacation, routines change, and old behaviors emerge, but trying to stay consistent will help get your child back to what they can do.

Praise specifically and genuinely

Praise your child specifically and genuinely when they do what they’re supposed to. Praise them when they do what you’ve asked, such as, “Thank you for being nice.” Even in those moments when your child is simply doing something you haven’t asked them to, like sitting down at the table for a meal, or jumping on the trampoline instead of wandering through the yard. (Wandering isn’t a problem, Autistic people experience a far different world then neurotypical people, they hear, see, and feel what we don’t, so in wandering they may be meeting several needs. but you want your child to expand their play, interactions, and experiences, thus praise when they do so.)

There can be so much correction and direction given to children with Autism, we need to make sure they know when they’re doing a good job.

I can’t speak for every Autism parent, but I know I’m often tired. It takes love, work, work, and more work to help our kids and we can fall into patterns of not noticing when our children are behaving because those are the times when we let up. I know I tend to notice more when my child is creating chaos. We may be exhausted from life and constantly directing that we forget to tell our child, “Thank you for staying down,” or “That was great listening.” I know I have to remind myself continually to not get absorbed in what Jeremiah is doing wrong, but in focusing on what he’s doing right. In the post More Perspectives on Applied Behavior Analysis you can watch the video which speaks perfectly to this exact scenario.

Jess of Diary of a Mom says, “…Always presume competence and to understand that our children, whether we believe that they are or not, are taking it all in, remembering it, storing it, processing it in their own time.”

You can print this list and place it on the fridge to help you remember the key points in this post:
tips to getting the right response

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I’ve written about getting the right response in relation to adopted and foster children in Keep It Simple: Simple Language = Understanding

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6+ ways to help your child when they can’t communicate (Autism/special needs)

6 ways to help your child when they can't communicateHow do people; therapists, family, teachers, and friends view our child who is nonverbal? Do they truly understand our child? How does our child feel when they can’t communicate what they desire or need? Can you imagine the frustration of not being able to tell someone you’re hot, hungry, want to go to a certain restaurant, play with a certain toy, that you can’t find your favorite blanket? Can you imagine?

What is it like to parent a child who is constantly misunderstood and underestimated?

Over at Emma’s Hope Book, Ariane wrote an important piece about one of her daughter’s experiences when Emma couldn’t communicate. Problem was, the teacher should have known what Emma desired. You can read about the situation in the post, Picture Day Moments. It’s a great read and you can share it with others to help them understand Autism.

In that post Ariane writes, “Teachers are trained in a definition of autism that is incorrect.  A definition that assumes intellectual disability which is connected to an inability to make oneself understood, low IQ, problematic behaviors, unable to read aloud and therefore cannot read, a whole series of assumptions are being made daily about Emma and kids just like Emma, but

those assumptions are based on a false premise.”

When we attended our last Individualized Education Plan (IEP) meeting, I asked the school therapists and teacher if they could imagine NOT being able to communicate. I shared how frustrating it would be to not be able to tell anyone what you wanted or needed. They didn’t have much to say, either because they’ve never had parents ask them such obnoxious questions (I am the Queen of questions), or because they didn’t understand what I was saying. Most therapists and the teacher in the room are fantastic with Jeremiah, but I wanted EVERYONE in the room to understand why Autistic kids demonstrate “behaviors” (I strongly believe many “behaviors” are linked to the inability to communicate).

There was a specific person in that meeting I was trying to reach. Because of the “therapy” she did with my son, he stopped signing one of the only words he’s ever signed, and did so consistently before she “therapied” it out of him. He also stopped using a word (one of the very few words he’s ever used) we’d been working on, well, for years. You can read more about that experience here.

Kindly educating others helps them see the beauty in Autism
In that IEP meeting, I was making an effort to educate the educators on Autism and my son. We need to share what we learn and what we know about our child with everyone in our child’s life. We don’t have to be the know-it-alls, but we are the ones living it and researching it (share articles and pages from books you read), we didn’t sit in a room and learn from a speaker or text-book, and others can gain insight from what us parents have experienced.

Share everything you can about your child:

  • Stories about what they’re doing and interested in at home.
  • What your child is playing with.
  • How their play/behavior is changing.
  • What behaviors they’re displaying (discuss what you think is causing the good and the negative behaviors).
  • What your child likes.
  • How your child is communicating and changes taking place. I mention the word “changes” a lot because our children are constantly in transition, what was true yesterday or last week may not be true today, so it’s essential that we have constant open communication with everyone in our child’s life.

In the end maybe we can avoid those Picture Day Moments Ariane wrote about.

My hope is people would learn more about Autism, understand more about Autism, and accept Autism. My hope is that strangers, acquaintances, friends, therapists, family, and teachers would understand our children and people who are nonverbal. Sharon Draper wrote an awesome book, Out of My Mind LINK, that I think everyone should read, it was an eye-opener for me and showed me so much about individuals who are nonverbal.

Emma’s Hope Book is a great resource for parents of Autistic children, and a great website to share with others who are involved with anyone who has Autism.

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my thoughts on Applied Behavior Analysis (ABA) – Autism

my thoughts on ABA
*The opinions expressed in this post are solely mine and based on our experience.

When the words “Your child has Autism” are spoken, most parents begin searching for ways to help their child. The psychologist offers advice, doctors suggest medication and therapy, friends refer to characters in movies or geniuses, other Autism parents recommend solutions that worked for their child. But one of the most common therapies you’ll hear about is Applied Behavior Analysis (ABA).

Autism parents invest tens of thousands of dollars per year on ABA, and many children spend thirty to forty hours per week in this intense therapy.

When I learned what true ABA is, I wasn’t a fan. Many therapists sit children down in a chair across the table and work intensely with the child. They will also focus on one skill such as putting a shirt on dozens of times in one session. This may work for some kids, but what about the ones who are constantly on the move, e.g. my son, Jeremiah? Jeremiah has learned to sit for longer periods of time, using fidgets* and routine, but working on something he’s not interested in (there aren’t many things at this time) would prove futile.

Some therapists use a reward system to get the child to perform, they may say, “After you put the puzzle together you may play with bubbles.” Jeremiah wouldn’t have been able to follow a similar direction until very recently. Even at this time he’s not quite there. Directions that are part of his daily routine are more at his ability level right now.

For example, because we’re working on “First/Then”* concepts at home and at school, he’s grasping what it means. I can take his doodle pad (which he loves and always has with him), and say, “Eat your snack first, then you can have your doodle pad.” But, to have him engage in an activity he doesn’t like, most anything besides puzzles, work boxes, peg boards, or coloring, you would have a meltdown with a crying, screaming child.

Frankly, I don’t want my child crying and screaming because someone wants him to learn his colors, look through a book, or get himself dressed. We push through on certain hygienic rituals like brushing teeth and taking a shower whether he’s crying or not, some things have to be done. The world can thank us later.

But, him crying and screaming because someone is making him learn to put his pants on or be involved in a group activity is not what I want for my child. I agree with constantly working with a child (with plenty of uninterrupted free play in between), we do this. We could work on education more, such as talking about colors and the like, however, we work on letters, shapes, and numbers on his doodle pad that he always has in hand.

Every time we get him dressed we walk through with words what he needs to do (in the beginning we used a lot of hand over hand teaching and less words), “Shirt over your head, arms in,” “Put your pants on, lift your leg, put your leg in.” It’s taken a while, but he is now helping to pull his pants on and has been taking them off for quite some time. 🙂

This is Jeremiah’s childhood and I want him to enjoy it like any other kid. I don’t want him miserable, working on the same skills over and over, hour after hour. Many ABA therapists will repeat the same skill over fifteen times in one session and I believe I’m being conservative with that number.

all children deserve a childhood

A family member recently asked me if ABA can work for some and not for others. Sure. ABA can produce skills, but in our case it hasn’t. We’ve used a modified form of ABA, but more on that in a bit. The true, follow the guidelines ABA has actually caused our son to lose skills. I’m sure many parents who stand behind ABA are shocked to hear this. You could say it was because of regression that he stopped using these skills, but he lost two, and they’ve never resurfaced.

When Jeremiah entered preschool he was using the sign language for “more” and saying, “maw” in the correct context. We shared this with his teachers, aides, and therapists, and most of them fostered his skill in the right way.

However, the speech pathologist did not.

Every time she worked with him, which was one day per week, she would do so at snack time. She would withhold his gold-fish crackers from him, and require him to use the sign for “more” and hand him ONE fish if he did. She would repeat this twenty or more times every time she worked with him. Because gold-fish crackers were highly motivating for him, that’s all she focused on.

Do you know what her tenacity resulted in? Jeremiah stopped signing and saying the word “more.” Completely stopped.

As for the modified ABA I mentioned, our amazing Behavior Specialist is the one who’s helped us with the adaptation. She’s not a fan of ABA in it’s true form either, but she will modify it for a child.

Here’s an example of modified ABA in a natural setting. We worked on something that Jeremiah was doing that we wanted stopped; he was hitting the t.v. during movies (sometimes because of excitement, other times seemingly just because). Lia* suggested we pause the movie each time Jeremiah got too close to the t.v. At first we pushed “pause,” walked up to him and gently moved him back the distance we wanted him from the t.v., and calmly said, “Scoot back,” as we moved him. Once he was a certain distance from the television, we pushed “play” and praised him, “Thank you for scooting back.”

As he learned what pausing the movie meant, we didn’t need to say anything (only praised when he did what was expected) because he moved back on his own. Lia also reiterated how important it is to…

focus more on his positive behaviors

…like praising when he does move away from the t.v. [ABA isn’t wrong, but I do think it’s taken too far], and when done in such a way, it’s taking childhood away from so many children.

The article, Would You Accept This Behavior Towards a Non-Autistic Child takes a look at how we treat those on the Spectrum. I highly suggest reading it and taking a look at how your child is treated at school, in your home, and in therapy. Ask yourself that question:

Would you accept this behavior towards a non-autistic child?

Next week I’ll be sharing some professionals thoughts on ABA as well as perspectives from adults on the spectrum and a mom who’s had a magnitude of success with her son (he’s fifteen, in college, and on track for a Nobel Prize) and hundreds of other kids with Autism whom she’s helped share their voice. Here is that article: more perspectives on Applied Behavior Analysis

*Jeremiah is 4 1/2 and nonverbal.

*Fidgets – sensory type tools used to calm a person. http://www.developmental-delay.com defines fidgets as tools that have
-Interesting tactile composition such as squeezable or spiky massagers
-Heaviness or pliability of the product
-Movement opportunities it provides our hands (can the child squeeze it?)
-Does Not make any noise, so it not a distraction to others
-Several different ones that are small enough to put in pockets”

 

*First/Then is simply having the child do an activity, and afterwards they get to do something they want to do. It can also be used to notify a child of an upcoming event. “First we are getting our pajamas on, then we will read a book.” Or if your child needs to leave an activity to do something they dislike, you can say, “First we’re going to wash hands, then you can play with the iPad.” Once learned, this phrase makes transitions easier, and works best if used in all their environments.

*Names changed to protect privacy.
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your child can hear you (Autism/special needs)

your child can hear you
I recently watched a video on Autism, and in that video moms are shown with their children, meltdowns are taking place, some kids are hitting their parents, you hear the babbling of nonverbal children (all trying to make their voice heard), kids that are too big to be carried clinging to mom, vying for her attention.

It’s real, and sometimes it’s the exact life I live. However, many of the moms in that video don’t realize their children can hear what they’re saying about them, nor do I feel they see the qualities their children possess. I don’t feel they’re trying to hear wheat their child is saying when they make a noise, hit them, or fall on the floor in a meltdown.

For this post I will focus on the first point. Our children hear what we say. Even when it looks impossible, like our child doesn’t understand the world around them, they CAN hear us.

I was surprised by what the mothers in the video were saying in front of their kids. At the same time, some of it sounded familiar because I’ve been there, saying very similar things. I still find myself making comments that I shouldn’t.

The moms in the video were saying:

  • This is so exhausting. (Referring to taking care of the child.)
  • She wants all of my attention.
  • He’s so difficult.
  • She’s like a baby.
  • He can’t be left alone for a minute.

My son, Jeremiah, is nonverbal and it took me a while (too long) to come to the realization that my son understood far more than what I thought he did. When I saw Jeremiah smiling in response to us talking about what he’d done, I started to recognize what he understood. Then he began to laugh at funny things he was doing, or funny things we said and it continued from there, me realizing what this kiddo understood, and how much I didn’t. Some of you are shaking your heads, saying, “Duh.”

When your child doesn’t obey simple (or so they seem to us) requests, it can lead you to believe they don’t understand anything you’re saying,

and that just isn’t true.

We also need to treat those with special needs with respect. Maybe you would say those things about a typically functioning child, but many wouldn’t. Stress makes us do things we normally wouldn’t.

It’s also really important to recognize that meltdowns are a child’s way of communicating, so are most other behaviors. And one woman, when describing her hand movements (stimming), said it was the song of her heart. She was communicating through her hands. When individuals are nonverbal everything is tucked inside, maybe it sounds obvious now, but I feel the fact is easily forgotten.

Let’s remember to be careful how we talk to, and about our child when they can hear us. Here’s another good post to help remind us how we should treat our kids, and how we should expect others to treat them: Would You Accept This Behavior Toward a Non-Autistic Child?

I also highly recommend everyone read the book, Out of My Mind by Sharon Draper. It gives us a glimpse into the life of someone who is nonverbal, but has much to say. It’s an easy and quick read, but so much can be gained from reading about Melody’s world.
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Out of My Mind – including special needs

Last week I wrote about inclusion. Why do I care about inclusion? Because of how much it’s helped my son, Jeremiah, who has nonverbal Autism. Another thing I love is the school he’s attending (which happens to be the only inclusive elementary school in our district, and is so close, I can SEE it from my house)!

Because MV* is an inclusive school, they make exceptional efforts to educate children in the realm of special needs. On the hallway walls hang words such as Autism and Dyslexia, with explanations and photos of famous people who live with those disABILITIES. Staff and students have the option of purchasing shirts that promote acceptance of disABILITIES, they have sayings like, “At MV, we see your disABILITY.”

out-of-my-mindLast week was the kickoff for their One Book, One School. The book they chose: Out of My Mind by Sharon M. Draper. The Denver Post says of Out of My Mind: “If there is one book teens and parents (and everyone else) should read this year, Out of My Mind should be it.”  At present, the book has been rated by 1,094 readers on Amazon and has a five-star rating! I’ve read some phenomenal books, and none of them have a five-star rating. And although our elementary school is promoting the book, it was written for young adults.

Here is a synopsis of the book: “Eleven-year-old Melody has a photographic memory. Her head is like a video camera that is always recording. Always. And there’s no delete button.

She’s the smartest kid in her whole school –

but NO ONE knows it. Most people – her teacher and doctors included – don’t think she’s capable of learning, and up until recently her school days consisted of listening to the same preschool-level alphabet lessons again and again and again. If only she could speak up, if only she could tell people what she thinks and knows…but she can’t, because Melody can’t talk. She can’t walk. She can’t write. Being stuck inside her head is making Melody go out of her mind – that is, until she discovers something that will allow her to speak for the first time ever. At last Melody has a voice…but not everyone around her is ready to hear it.”

At the school’s kickoff, there were various activities throughout the school which taught kids about what it’s like to live with special needs. At one station they needed to move a wheelchair from one point to another, at another they fed someone while blindfolded, they dressed someone whose arms and legs were straight out and completely stiff, they had to communicate their desires with a PECS board, and they learned about therapy dogs. We are so fortunate to be part of a school that’s focused on helping the students and staff learn about special needs.

Educating children about special needs will only make a better society.

inclusivesocietyI leave you with this quote from the author Sharon Draper, “I was fiercely adamant that nobody feel sorry for Melody. I wanted her to be accepted as a character and as a person, not as a representative for people with disabilities. Melody is a tribute to all the parents of disabled kids who struggle, to all those children who are misunderstood, to all those caregivers who help every step of the way. It’s also written for people who look away, who pretend they don’t see, or who don’t know what to say when they encounter someone who faces life with obvious differences.

Just smile and say hello!”

Does your school include special needs? What efforts do they make to teach children in the school about special needs?

*initials are used for school name to protect privacy.

Some other posts that may be of interest:
what is inclusion?
great special ed teachers = priceless
the board’s decision overrides

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