5 tips for parents of special needs children

5 tips for parents of special needs children
Thinking positive is what gets me through. Crazy thing is I’m not a positive person. Now you say, Yeah right, sure you aren’t. But I’m not, I’m quite pessimistic, really the kind of “glass half empty” kinda gal.

I’m fairly positive when it comes to autism though. I’m learning from some of the best, and I’ve mentioned them here before, a therapist, a special education professor, autistic adults, and parents of autistic children who look at their child’s autism in a different way than most. It’s really helped me to see autism from a whole new perspective.

But what happens when the road is extra rough, whether it be normal life or autism? I won’t lie, it’s like a raging river in our house the last few weeks, I’m being tossed under the rapids along with my husband. I want to be honest and I know many of you face these same situations too.

In an effort to share with you the reality in our home, but also in an effort to avoid bogging you down with the negativity…ah heck, forget the latter, here’s what hell’s broken loose here. Some of this doesn’t even have to do with autism, because if we were to take a check of life, there are many complications that have nothing to do with autism.

  • Our washer broke in April.

In the last two weeks:

  • Our refrigerator stopped working a week-and-a-half ago and we haven’t been able to get a repair man here. When your family eats mostly fresh foods, no packaged foods (except for the kid with autism & the desserts) this is a problem.
    And honestly, the fridge and washer aren’t the biggest deal around here. When I hear my friends complain about their car causing problems, their appliances quitting, their plans going wacko, I sometimes want to say, “Spend some time over here and those will be the least of your worries.” It’s not always autism, but those hard days can tip us over the edge.
  • I had a thyroid biopsy a week-and-a-half ago because of my rare cancerous disease. I still haven’t been told the results of that test.
  • The school year ended and summer began. Adjustments for everyone.
  • Jeremiah learned to unlock deadbolts. He wanders and has zero awareness of the dangers cars careening down the road pose (or any other dangers for that matter).
  • Jeremiah is realizing that he no longer wants to wear a wet pull-up. Therefore, he is removing said pull-up and then going potty. So, at five (and 50 lbs), he’s obviously not potty trained. He’s nonverbal, so this poses extra difficulty in the process, nor does he understand all language. “Potty goes in the toilet,” means nothing to him. “That’s gross,” means nothing to him. Besides all the angst this causes – potty on the bed, potty anywhere and everywhere – it’s awesome that he’s beginning to understand the concept – not liking to be wet, the first stages of potty training. See, there’s that positive outlook I mentioned earlier. Yeah…
  • Jeremiah doesn’t like being poopy either, so he sticks his hands in there and it gets everywhere. I have back problems and overall pain, so taking care of this is quite taxing.

This is definitely a short list of what’s going on. We have another child besides the one who has autism, my husband owns a small business, and, yeah that disease I have. It can be overwhelming.

These are a few of my favorite things..when the kid pees, when the fridge breaks, when I’m feeling sad, I simply remember my favorite things, and then I don’t feel so bad.

If it only worked!!

I know some of you are wondering how to get through the next day, or even this night. I don’t have a pat answer, or a numbered list of steps so you can feel fabulous in one week. I do however know how I handle the rough and tumbling waves. Right now I’m not handling them well at all, but I wanted to extend some hope to you who might need an overhanging branch in that raging river you’re riding on.

1. Stay positive. Look at what ‘s good in your life. As I shared my recent circumstances with a friend, I was in despair, but then I began telling her about some other situations and I realized what good things were going on despite how I’m feeling. One of those is a grant we received for an iPad, case, and apps. There are good things around you, you just may have to do some demolition to see them for what they are. Same with how Jeremiah is noticing that he can pee outside of his pull-up and he’ll stay dry. Hurray! (Am I supposed to celebrate that?)

2. Grab an ear. Find someone who listens to you and is empathetic. Even if you have to pay a therapist. 😉

3. Do what you want. Spend time doing what fills you up. I know this is much easier said than done, but try to take the time, it’s essential to caring for a child with special needs.

4. Support each other. If you’re married, support each other. Have open communication and talk about what isn’t working and what is working. Listen to your spouses needs and desires and help them. Then ask your significant other to read this post. 😉

5. Listen to others who talk positively about special needs. They can have their bad days, we all do, but you want to surround yourself with people who will encourage you to see the best in your child, not the worst. Wallowing in those negative places won’t help. At all.

Sometimes life is hard. Sometimes autism is difficult, and it’s hard to see the rainbow. I hope this helps you know that even though I try to speak positively about autism, there are days when the rapids are washing over me, days when life is tough. But even in these days, I often come to the end knowing that it’s going to be okay, I can still see my beautiful child and know that one day soon it’s going to get better.


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transitioning the special needs student to another class or school

transitioning the special needs student
Yesterday was Jeremiah’s last day of preschool. I’m crying. I’m scared. I’m worried.

I know so many of you can relate. The awesome thing is that Jeremiah’s preschool teacher can relate because she has an autistic son who’s sixteen. She has said over and over through our three years together that Jeremiah reminds her so much of her son. She knows what it’s like to move from one class to another, changing teachers, aids, and paraprofessionals. Sometimes they’ve been blessed with amazing teachers and staff, and other times it’s a whole different story.

And, yes, you may have caught that above, Jeremiah’s been in this same preschool class for three years. That’s a LONG time. It’s like a second home.In fact, his teacher, Ms. Gina, got teary eyed during our last conference. What can I say, Jeremiah touches people’s hearts.

Ms. Gina has been an exceptional teacher. At the end of last school year she recognized her classroom was becoming too comfortable for Jeremiah. This is great as a parent, and for the kid. Comfortable is good right? Well, Ms. Gina knew that Kindergarten was looming in Jeremiah’s future and wanted to prepare him for a small degree of the change he would face. She entirely rearranged her classroom before school started in fall of 2014. She moved everything for the first time since being the teacher there. For him.

This is part of why I’m so concerned about next year. We’ve had an amazing teacher, aid, and paraprofessional, we’ve also had some great therapists in the last three years.

But what about next year?

Jeremiah won’t have the same teacher, aid, paraprofessional, and one of the therapists who’s been so successful with him won’t continue on to elementary either. Those who know him so well and care about him so much won’t greet him every day or be there to know why he’s upset, what he needs, what’s bothering him.

The ONLY thing that gives me solace in looking to next year is that the principle is exceptional. It’s because of her dedication that Jeremiah’s school is inclusive, including special needs students in the general classroom. Mrs. Bianchi cares about each of her students as if they were her own, and I’m not just saying this as a cliché, she really cares. When the preschool class had to meet in the library instead of their classroom because of an issue, the principles concern was for Jeremiah. How would he do?

Because of his autism, Jeremiah needs consistency and routine. Not being in the classroom, where he is every school-day, could be disastrous, and Mrs. Bianchi knows this and was concerned about him.

My fears are lessened a little more because Mrs. Bianchi has an active presence in the school. She’s visible most of the time, not shut in her office. She sees Jeremiah almost every day as he’s made his way to the kindergarten (see info on “transitioning” below).
transitioning the special needs student to another class

Because of this exemplary school (a public school by the way), they’ve done so much to help transition Jeremiah into the Kindergarten class.

Here’s what they’ve done to help special needs students thrive, support teachers, and make the parents feel more at ease when big transitions come:

First, it’s important to know who the child’s teacher will be the following year. Even though most students haven’t been assigned to a teacher yet, the children with significant special needs have. This needs to be done before the following steps can be accomplished with a positive outcome.

Trips to next years classroom

A few months ago, Jeremiah’s Speech Pathologist took a video on her iPad of the walk from the preschool (modular) to the Kindergarten classroom (main building). The therapists, teacher, and aid have taken turns walking him to “Big School,” while showing him the video as they walk. They began by first walking in the front door of the school, they did this every day for several days, then they would walk to the gym for several days.

They went further and further until they were at the Kindergarten classroom. Sometimes kids were in the class, sometimes they were in the library, computer, etc. But Jeremiah went in each day, finally to the point that he sat with the kids in circle-time! Yeah, I know, pretty cool since he just started sitting on the floor during circle-time in preschool!

This does a couple things. It gets the child used to going to a new place, new class, with a new teacher. It begins to prepare them for next year when they’ll be going somewhere new, it won’t be such a shock when they walk through those doors the following school year. Another great benefit is the teacher (and possibly aid or para) can get to know the child a little before starting the school year. It’s better than walking in to a new situation without knowing what to expect, that’s already the case with the other twenty students.

Transition Planning Meeting

Another extremely helpful step is a “transition planning meeting.” We just had this meeting last week, and I thought it quite valuable. Those in attendance are, preferably, the current teacher, principle, school psychologist, special needs teacher, any therapists who work with your child, future teacher, aid (if there will be one), paraprofessional, and of course the parents. If the child who has special needs can attend the meeting, I would highly encourage this, they’re input is essential, they are the best indicators of what works and what doesn’t.

Why should parents attend? Because your input and involvement matter! I once heard an educator say, “When parents are involved, their kids are worked with more. I know it shouldn’t be this way, but it is.” Be involved, know what’s going on, communicate with your child’s educational team. You will see why it was important for my husband and I to be at the meeting when you see the questions that were asked. We were able to add our input on every topic about Jeremiah, our voices were heard and I’m positive much of it will be implemented (if the principle has anything to do with it). The Kindergarten teacher asked if she could get a copy – one was typed out and sent to each person in attendance.

I took notes for you at the meeting (or in my head anyway). 😉 There were four sheets and each one had a title. Everyone shared their thoughts on each heading.

Who Is Jeremiah?

Instead of being another child, another number, it’s important for those who know Jeremiah to share who they think he is.

Hopes & Fears

It was hard to share our fears, or it was hard for me anyway. I don’t think Justin has as many fears as I do. 😉 At the meeting they said, “There always has to be a worrier.” I raised my hand. High. That’s me. And astonishingly, during the meeting I didn’t feel as fearful as I had been or as I am now. Now, almost every day I’m telling Justin, “But they won’t…”
If you do this with your school, share your fears, it’s good to work it out together, and maybe the staff can help ease some of them.
Teachers, encourage parents to share those fears and be open to hearing them, they are real and vivid for us. This is even more true when our children can’t communicate or can’t communicate well. We have no idea what’s going on behind those doors unless we’re present and that’s not possible all the time.
Hopes are easy to share, everyone pitched in.

What Works/What Doesn’t

Current teachers and therapists can talk about this from their perspective in the classroom. Parents can share what works at school and what doesn’t, they can also share what works at home and what doesn’t. It doesn’t seem that home and school would overlap, but they do all the time.

Plan Moving Forward

Each point was assigned to a person at the table to work on.
What needs to be prepared for next year? A trampoline installed? A swing? Who will take photos of the classroom for PECS or a communication device?
———-

Parents, I hope this helps you know you’re not alone, that this is scary for some of us, and what you can share with your school to help transitions to go smoother. If you’re a teacher, I hope this helps you know how to make transitions better for your students.

I don’t share these positive stories to make special need parents feel bad. I know there are so many situations that fall far below what is desired by parents; schools don’t work with you, teachers don’t treat your child right, you wish you could keep your child at home. I share our stories because I want to educate teachers on how it can be done and how it can work.

Be sure to share this with teachers you know so we can make life better for special needs kids.

You can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, this may need to be done on the web version. You can “like” my Facebook page and follow me on Twitter and Pinterest for more helpful information and links.

believe in your child (autism)

believe in your child
I’ve got to get out more. When we get out of our comfort zone and I talk to others, it gives me platforms to jump off. Ideas come pouring in from what I see and experience and I can’t wait to tell you all about it. However, with autism it’s difficult to leave this haven and my disease also keeps me tied down most of the time.

Despite those obstacles, we did leave the safety of our humble abode and spent time with others this weekend, and it brought to mind something I’ve thought of sharing with you before. I’ve shared bits and pieces of this idea, but it came to light again, and I feel it’s so important for autism parents and educators to hear. It can’t be heard too much, it’s something I think we need to be consistently reminded of. I know I do.

This past weekend we spent some time at my kids Grandma’s house. Now before I start, this is NOT a mother-in-law bashing session. My mother-in-law takes great care of our children, she runs an in-home daycare, and she’s always been the most sought after daycare in town. She takes care of our kids for a few hours during the school-week and a couple mornings and an afternoon in the summers. I’m grateful I don’t have to fear every time they go to daycare, I know they’ll be taken care of and I know no one will abuse Jeremiah.

However, after years of doing daycare, Grandma has turned into, well, a Grandma. She’s also never had children in her daycare who have significant special needs. This isn’t a problem for short visits, but when it seconds as the kids daycare it can pose some challenges. One of those is how she treats Jeremiah. She doesn’t treat him badly, but neither does she see what he’s capable of, and even when she does, her expectations aren’t raised.

It’s one thing when I hear about what she does with Jeremiah. (My husband, Justin, is usually the one to drop-off and pick-up the kids, so he relays the daily goings-on at Grandma’s.) It’s a whole other side of the coin when I see it in progress. At her house, Jeremiah is allowed to take his food into her room and eat his snack on the bed while watching a movie, he also has his cup of juice. There is always a movie on, when he enters her house she turns it on for him.

At our house we’ve worked VERY hard to teach Jeremiah to sit at the table when he eats. The food stays on the table, but he is allowed to come and go because he snacks all day since he doesn’t get proper nutrition from any food source, so he doesn’t get full at a meal. We don’t let him drink juice at home, we don’t have it in the house. If we did, he would be begging for it all the time, in the fridge, or crying at said fridge. But, it’s Grandma’s house and we draw the line at sugar loaded cereal, but let the juice slide.

So, when we were at her house this weekend, Jeremiah went to the cupboard and got some cereal, Grandma filled his bowl with it and sent him off saying, “You can take that in and watch your movie.”

I happened to be standing between Jeremiah and the “movie room” and he headed straight for the table instead of her room, and sat his bowl down. I grabbed a chair for him to sit on, and Grandma said, “Oh, he takes his snack in to watch the movie all the time.” I just smiled, or tried to, it was Mother’s Day after all. I told Jeremiah to sit down and he did.

Why did he take his bowl to the table when he normally takes it to the “movie room” when he’s at Grandma’s? Was it because I was standing there and he knows I’m his mom and I have expectations? Is it because he knew what those expectations were? Was it because he knew Mommy wouldn’t let him take his food on Grandma’s bed? I think so. He’s not dumb.

There was a time when Jeremiah couldn’t understand as much, and at that time we didn’t expect as much. Although we’ve always had expectations that he leave his food and drink at the table, along with some other guidelines.

As Jeremiah gains understanding, which is happening rapidly, we increase our expectations, always keeping in mind what he’s able to do.

This is what I want parents to do. I want parents to have reasonable expectations for their kids. I don’t want autistic kids to play video games and watch movies all day every day because “that’s all he’ll do.”
increase expectations for the autistic child

When Temple Grandin was young, she used to spin a ball that was connected to her bed, it calmed her, made her able to function in life. She could have done this all day, but her mother only allowed her to spin this ball for a certain amount of time during the day, she knew her daughter needed to move beyond the spinning ball, and she did.

Side note: I do feel that time for movies and video games is sometimes necessary for the autistic person. I used to feel so guilty when I would allow Jeremiah to watch more movies than I thought healthy for a child like him. Lia, the therapist who used to work with us said that maybe movies helped Jeremiah, made him calmer, helped with his sensory needs. She felt that sometimes he needed to focus solely on what was on the screen instead of everything in his world.

As in anything, there’s balance, and we need to be able to read our kids and understand what they need, but also what is good for them.

A couple years ago I watched a video of Rosie King at home with her autistic brother. Rosie has autism, but it’s more of an Aspergers type. It was a great video with excellent insight into how autistic people feel, but when they turned the camera on her brother, I was slightly bothered.

He came running out of the bathroom where he’d been taking a bubble bath, he was covered in suds. In another scene, he was kicking sand out of the sandbox, and in another he was climbing on the top of the entertainment center.

As for the climbing on the entertainment center, whatever floats in your family is good for you. I’ve learned that sometimes Jeremiah does this (only on the top of the stand, not the top near the ceiling like Rosie’s brother) because he needs a higher perspective, so we tell him to get down and take him out to the playhouse and let him climb there.

But running around the house dropping suds everywhere, this isn’t harmful, and if the parent’s okay with it, fine. But would this parent allow a non-autistic child do this? Well, probably, but it really releases any expectations on the child who needs to learn how to be in society like other kids. Different is fine, unacceptable behavior is not.

And kicking sand out of the sandbox? What happens when this child is upset and anywhere near dirt in the community? Will he kick it? Is his behavior isolated to sand? Would this behavior be acceptable when he’s in the sandbox with his friends?

We need to have expectations for autistic kids. No, they won’t be nearly as high as those for typical kids, but typical kids have expectations too. And I don’t mean that we need to be doing ABA forty or even twenty-hours per week. I mean expectations as the child is able. For example, we are working on potty training Jeremiah. We aren’t doing it the ABA way, and it’s going to take forever, but we work on it. We don’t expect Jeremiah to be wearing a pull-up when he’s thirteen.

We’re also working with him on pulling up his pants on his own, we would work on this some if he’d never done it before, but we have more expectation that he will learn to, and needs to work on it, because he takes his pants off and puts them on  when he wants to.

We may let our kids stand on certain couches or chairs, but not let them stand on others, and this is fine, as long as your child is able to learn to differentiate.

Both autistic kids who are verbal and nonverbal are capable of so much, often much more than we realize. Allowing them to get away with everything because we don’t want to teach them or we don’t think they’re capable isn’t always a good excuse (it’s a good excuse occasionally because I know we’re damn tired). But I know from teaching and working with my son who was thought to be a more severe case of autism, that these kids can. They can do so much more than we may ever realize, and they understand so much more than we ever realize. And often that CAN is connected to what we think about them and their capabilities – just like Jeremiah and his snack at his Grandmas, when I was there he knew the expectations were higher and he met them easily.

Are there things that you’ve assumed your child can’t do? Are there things you need to work on? What are those?

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why you should teach the autistic person the word NO

why you should teach the autistic person the word no
Are children allowed to say no? Think about a non-autistic child, are they allowed to say no? Think about the autistic child, are they allowed to say no? Usually not. They almost always have to comply.

Autistic children don’t get a choice, don’t get to express how they feel, nor do they get to say no.

Neurotypical children do have to follow a set of parameters most of the time, but they often get to make choices and say no. Think about the day in a non-autistic child’s life. They get to choose what book they want to read, a book isn’t placed in front of them while someone reads through each page with them. Neurotypical children get to choose what activity they want to do when it’s free-time, but often autistic kids aren’t even allowed free-time, let alone choose their desired activity.

Non-autistic kids are allowed to say no. If they don’t want to do something, say go on a bike ride, they can say they’d rather do something else, and their request will be adhered to. If that child doesn’t want to play with their cousin Lily, but would rather play with their cousin, Taylor, they can. If that child is finished with an activity they can say so, and if they’ve done it for enough time (far less time than what is required of an autistic child) they can stop.

We see time and again where the neuro-typical child gets to make choices and say no. But what about the autistic child? They’re made to comply their entire childhood, especially the ones in ABA, which is a large percentage of the autistic population.

Through autistic training, children learn they can’t say no, neither can they make choices for themselves, and when they are allowed to make choices, those options are very narrowed – a choice between two books, two activities, two food items.

If an autistic child can’t talk or can’t communicate well, it compounds the problem even more. They’re not taught to say no, it’s not part of autism education, nor part of life for many autism parents, they often don’t comprehend how important it is to teach their child to say no.

teach your children to say no

What happens when a child doesn’t learn the word no as part of their vocabulary? Sparrow Rose Jones lays it out wonderfully in her article, No You Don’tI wish every autism parent, every professional working with autistic children would read this.

If you don’t teach the autistic child to say no, you’re opening a plethora of problems for them.

People will take advantage of them, and this is especially dangerous for girls. If girls aren’t taught to say no, they open themselves to great harm; sexual abuse.

But the truth is, it’s dangerous and unfair for all autistic individuals, even boys, to not be given the opportunity to say no. If they don’t know how to say no, or when to say no, they open themselves to being taken advantage of and abused in our society.

“I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it. I want you to teach your children to value themselves.” Sparrow Rose Jones, autistic adult

How do you teach your nonverbal child to say no? One way is to implement a “No” card or picture if you use PECS or a communication system. We started with showing Jeremiah the “No” card whenever he didn’t want something, his way of showing us used to be turning his head away or walking away. Each time your child shows you with actions or sounds they don’t want something you can show them this “No” card, and you can begin to incorporate it in the cards/photos they use.

Jeremiah doesn’t use many PECS pictures, so the “No” card hasn’t caught on, however he’s been verbalizing much more in the past months and can make the sound “uh uh,” and shake his head sometimes. We take each of these opportunities and say for him either, “No, I don’t want that,” or “No thank you.” He is shaking his head and verbalizing his no quite often and it’s so exciting. For him to be able to communicate what he wants and doesn’t want is a BIG deal.

When children are taught from a young age that they have to do everything the adult says, exactly how the adult says to, exactly when the adult tells them, it creates…compliance.

That compliance cycle can create many problems for children down the road. As autism parents and educators, we need to give children choices and the opportunity to say no.

You can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, this can be done on the web version. You can also “like” my Facebook page and follow me on Twitter and Pinterest for more helpful information and links.

autism’s siblings: what a 7-year-old has to say about autism and her brother

autism siblings: what a 7-year-old has to say about autism and her brotherAfter reading an article on Huffington Post titled, “My Sons Love Their Sister but Not Autism,” I decided to ask my non-autistic daughter a question.

I thought Payton would have a different perspective so I asked, “Payton, do you like autism?” Payton answered, “Yes.” Then I shared with her what I’d told the nursing staff at the hospital where I speak on autism. I had told the nurses that Payton is the best sister I could have asked for Jeremiah. I went on to tell her how amazing she is, and how much she understands autism.

She smiled, thought for a few moments and said, “Another sister might have loved Jeremiah, but may not have understood Jeremiah.”

This video stemmed from that conversation. I wanted to share this 7-year-olds perspective on autism.

We went through the questions only once before this interview. There are some things Payton said during the note-taking that I thought I’d share with you. Note: She didn’t use notes while doing this interview.

Question: Is there anything special about Jeremiah?
Answer: He makes cool sounds. He makes me more interested in autism.

Question: Do you like your brother?
Answer: Yeah. Some people might like Jeremiah or love him, but might not understand him. Like, I like Candice (girl at school), but sometimes she pulls my hair.

Question: Do you know Jeremiah loves you even though he can’t tell you with words?
Answer: Yes. If I didn’t have a brother like this I wouldn’t be so happy about what he’s learning. (She does get VERY excited when does something new, and often points it out, or shows great interest when we tell her about it.)

Question: How do you know he loves you?
Answer: He’s gentle and touches my hair and holds my hand. Sometimes he’s not gentle, but he usually is and that makes me feel like he loves me and likes me.

She also made comments over and over about how what Jeremiah does and that learning about autism “makes her feel really good inside.”


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how Autism Speaks spreads awareness: it’s not what you think

how Autism Speaks spreads awareness - it's not what you think*You can listen to a recording of this post, just scroll to the end.

Autism Awareness Month needs some work. A large portion of awareness is propelled by Autism Speaks, but what is Autism Speaks saying about autism and what is their awareness doing? I thought I’d give you a glimpse at how Autism Awareness needs to change to Autism Acceptance, a concept that isn’t new, nor initiated by me. Autistic adults have been trying to make a change for years.

So, since Autism Speaks seems to be the organization we see plastered everywhere when we think of autism, let’s take a look at what they believe, and what their “awareness” is composed of.

Autism Speaks is hailed as wonderful by a multitude of autism parents. It’s one of the largest organizations that attaches its name to autism, and because autism parents think this establishment is going to find answers for their children, much of the world views Autism Speaks positively.

Individuals who stand on the sidelines give money to Autism Speaks because they see an organization that’s helping families who live with autism. But there are a few problems with Autism Speaks. It’s taken me a couple years to make such bold comments on this organization because I really wanted to find out the whole truth.

I’ve heard enough now, and have formed my opinions.

The first red flag that’s been raised is, Autism Speaks doesn’t listen to autistic adults. Autistic adults have written innumerable letters and contacted Autism Speaks countless times asking them to change what they tell the world about autism.

In the 2014 Joint Letter to the Sponsors of Autism Speaks, the Autistic Self-Advocacy Network (as well as over a dozen other mental health and disability groups) writes, “Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership…The slogan of the disability rights movement has long been, ‘Nothing About Us, Without Us.’ Almost nine years after its founding, Autism Speaks continues to refuse to abide by this basic tenet of the mainstream disability community.”

Autistic adults aren’t going in with guns blazing, they’ve tried without success to communicate with Autism Speaks in a cordial manner. In the 2014 Joint Letter to the Sponsors of Autism Speaks, the Autistic Self-Advocacy Network also writes, “It is our hope that we may work together in a spirit of partnership to find new and less controversial ways for you to show your commitment to our community.” If this isn’t making great efforts to work together in an agreeable way, I don’t know what is.

Second, Autism Speaks highlighted the Judge Rotenberg Center (JRC) in their 2013 Walk Now for Autism Speaks Resource Fair. The JRC abuses autistic people with shock therapy, isolation, and much more. Here’s an excellent article written by Jess at A Diary of a Mom on the heinous acts the JRC inflicts upon the disabled, Judge Rotenberg Center.

The third issue is, Autism Speaks focuses on preventing and curing autism. Only 4% of Autism Speaks budget goes to “family support”, that “family support” being the portion individuals who donate think most of their money is going to. Whereas, 44% goes to research. Autism Self-Advocacy Network says, “Most of the research that Autism Speaks funds is devoted to causation and ‘prevention,’ including the prospect of prenatal testing.”

Autistic adults don’t want to be cured, they LIKE their autism. They tell us autism is part of who they are. 

My son, Jeremiah, would not be who he is if he didn’t have autism. Yes, certain aspects of his personality would be the same, for example, he’s really well behaved and doesn’t get in trouble doing typical “kid” stuff. But so much of who he is directly correlates with autism.

I completely support wanting to help the autistic person deal with things that are difficult for them, but to eradicate autism altogether, I’ve come to believe isn’t the right thing to do. Autism gives us a view into a world we otherwise would never witness, and so much of it is special and beautiful.

When autistic people say they don’t want to be cured I think this is a powerful statement that needs to be heard. I think so much of what we think we know about autism is perspective and who influences that perspective.

And prenatal testing? We just opened whole new &%$# load of problems with these words. What does prenatal testing do? Does it prepare the parents for what’s ahead, give them a heads up? Or does it more likely give the option of terminating pregnancies where the child has autism? The latter is far more likely and I have very strong opinions on the matter which I won’t discuss here.
autism awareness month must inlcude the autistic adult

Another problem I have with Autism Speaks is how they refer to our children who have autism. The Autism Self-Advocacy Network says,

“Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as ‘tragic burdens on our families and society.’ In its advertising, Autism Speaks has compared being autistic to ‘being kidnapped, dying of a natural disaster, and having a fatal disease.'”

My son has what Autism Speaks would consider “severe autism,” he’s nonverbal, his sensory processing issues overwhelm him at times, and he’s the child you might find having a meltdown on any given day. Yet, I DON’T feel any of these statements are true of my son or our family. Neither do many autistic individuals.

Fifth, the CEO of Autism Speaks doesn’t even understand the autistic individual. In an address Suzanne Wright recently made to the Pope, she said, “Autism is forcing parents and caregivers to slow down the frenetic pace of our modern world and look into the eyes of our loved ones.” Do you know how autistic people feel about eye contact? Suzanne obviously doesn’t. You should hear what they say. Many of them say it’s actually painful.

Sixth, the support Autism Speaks provides to families only makes it possible for those families to get their child in ABA therapy, and much of their financial support doesn’t stay local. ABA doesn’t focus on the child’s positive attributes, it focuses on removing the negatives. It doesn’t focus on WHY the child has certain behaviors. Many autistic adults were harmed by ABA, and for many it caused them to have PTSD and Obsessive Compulsive Disorder.

The main problem I have with Autism Speaks is it promotes a very negative view of autism. I shared some of their propaganda above. They also show you the most severe autism, a child who is overweight, one who falls on the floor, flailing in the midst of a meltdown. The biggest problem I have with their “awareness” is they don’t tell you WHY the person is behaving this way. Mostly because they don’t really know and don’t understand.

Autism Speaks only focuses on the overstressed parent who doesn’t know what to do and that parent only sees the negatives in their child’s autism. They show the difficulties, but they don’t show the WHY or the good.

As I said earlier, Autism Speaks is the voice the world hears on autism. What is it saying? Are their words positive? Are they uplifting? Do they make people feel good about autism or think it’s a horrible disease that needs to be eradicated? This is awareness, but the wrong kind of awareness.

As countless of autistic adults have said, it needs to be Autism Acceptance Month. To accept autism, we need to know WHY, not simply what is, or what certain cases look like on the Spectrum.

It’s a whole picture, a whole person that Autism Speaks is ignoring. They definitely aren’t accepting autism. 

Make sure and come back for follow-up posts on Autism Acceptance, one will specifically focus on WHY autistic people do what they do, this is to bring understanding, but also in larger part, acceptance.

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when parents accept autism, the world will too

when parents accept autismApril is Autism Awareness Month and there are many autistic individuals and some autism advocate parents who would love to see that changed to Autism Acceptance Month. So as part of Autism Awareness/Acceptance Month, I want to ask what we’re doing to accept autism.

Accepting autism begins in the home of the autistic person, it begins with the parents and their view of autism. If you’re an autism parent, what is your view of autism, of your child?

*You can read about why I refer to those who have autism as “autistic” in the post It’s in a Word: Autistic vs. Has Autism.

Do you view your child through a positive lens? Or do you view them through a negative one, focusing on those “bad” behaviors (when your child is simply trying to communicate, or over or underwhelmed with sensory input), inability to make eye contact (some autistic people actually feel pain when forced to look someone in the eye), lack of social skills (or is it really different social skills)?

Something that can keep us from seeing the positives or potential in our child or from accepting who they are is Applied Behavior Analysis (ABA).

If your child’s in ABA, please know that I’m not judging you. I’m speaking honestly about how I feel based on my sons experience and how autistic adults who have sometimes suffered at the hands of ABA therapists feel. We are all on a learning path and the voices that have overwhelmed your experience are the ones that will largely determine the path you’re on.

Most of the time that path for autism parents is ABA. They jump blindly into it because everyone who has a child with autism seems to be doing it, and almost every therapist, teacher, or doctor you talk to highly recommends it.

I believe when ABA is extremely modified it can be helpful to a child who has autism. Some ABA therapists work under the guise of ABA when there isn’t much similarity so insurance will cover their services, however some ABA therapists still hold to the fundamentals of how ABA began. If you don’t know how it began, I encourage you to read ABA by Sparrow Rose Jones, an autistic adult who suffered under ABA. It’s important to know where this therapy stems from and if the therapy your child’s in has morphed from how it originated. Don’t worry, I know it’s overwhelming, and this post will help you know what too look for and be aware of.

ABA’s focus isn’t on the positives in your child, or respecting who they are as a person, the goal is to conform them into what the world around them sees as “normal” and it’s based on a “fake it until you make it” mentality. And what if your child feels very normal and doesn’t want to change?

I understand there are behaviors we need to help our children work through, however ABA doesn’t do this in a positive, encouraging way, it does it in a very negative way, not recognizing who the person they’re working with is, nor respecting what that person wants. ABA’s focus is to work the “bad” behaviors out of the autistic person, having no idea or care as to why that person is acting the way they are. Dr. Ivar Lovaas, the man who developed ABA says, “You have to put out the fire first before you worry how it started.”

“Autistic children are not allowed to be themselves, being forced instead, to learn how to pretend, never learning self-determination, never allowed to have an independent thought.” – Amy Sequenzia in her post, My Thoughts on ABA

“If you want something from me, if you want me to do something, respect who I am, respect my way of doing things, listen to me and allow me to disagree and to find my own way.” – Amy Sequenzia in her post My Thoughts on ABA

Autistic children need to be reinforced with positives just the same as non-autistic children. We need to find out the why behind behaviors (because behavior is communication), not suppress them because they don’t fit into society, or those behaviors bother us. We consider the autistic individual and find solutions they agree with, not ones that are forced on them.

Autistic children should never be forced to sit at a table for hours so they can learn colors, numbers, or letters, they need to learn through their environment (there’s a great example of this in the post More Perspectives on ABA). If an autistic child learns their colors and the stuffed bear is blue, there’s a good chance they won’t be able to correlate this with the outside world. The skills learned in ABA are often non-transferrable to the outside world because they aren’t learning through the environment.
autistic adults thoughts on ABA

I could go on and on about the problems with ABA, but I think this will be more helpful. Ask yourself these questions about your chid’s therapy, both in and outside of school and therapy:

1) Does your child’s therapy focus on the negative behaviors and not reinforcing the positives? How many positives are there to each negative?

2) Does your child have time to BE a child? If they’re going to twenty, thirty, or forty hours of therapy, the answer is no.

3) Would you accept this behavior toward a non-autistic child? I first read about this in the article, Would You Accept this Behavior Towards a Non-Autistic Child? It’s not a new concept, it’s something we should all think about when it comes to our children.

“ABA is nothing more than child abuse. If these same techniques were used against a normal child, all HELL would be raised.” (Referring to ABA in it’s true, pure form.) – Jeff Sexton (autistic)

4) Is the goal of your child’s ABA compliance? A great article about this very issue is, No You Don’t by Sparrow Rose Jones. This article hit me hard. It’s extremely important to take a look at ABA from this angle. If everything is compliance and your child isn’t allowed to choose or say “No,” then there’s an enormous, life affecting issue going on. In No You Don’t, Sparrow spells out exactly what can happen to autistic individuals who are forced to comply with every request, and as a woman she speaks to the sexual abuse she’s endured because of this being ingrained in her psyche.

5) Are you allowed to be part of the therapy? If not, this raises a big red flag. Parents have the right to know what’s happening during their child’s therapy. Also, I feel very strongly that most therapy (meaning simply learning and guidance for our child) should be done at home. If the therapy you’ve chosen has passed the test, then you should be implementing it at home, this is where a large percentage of learning takes place, not in the classroom or therapy office.

6) Does your child’s therapist force your child to do things that are extremely difficult or impossible for your child to do? This is wrong for anyone to do. I’ve met ABA therapists who don’t know what making eye contact is like for an autistic person.

“As a teacher, I have been horrified by things that were done to children in my classrooms in the name of ABA. It came across as incredibly disrespectful of the human being in question.” – Joanie Calem

7) Is your child given ample opportunity to learn through their environment? Does your child spend time with non-autistic children?

8) Is the therapist on the floor with the child, playing? Are they encouraging you to do the same? In my opinion some of the best therapy for children with autism is Floortime, a therapy created by Stanley Greenspan.

The world says we need to put our autistic children in ABA. Other autism parents. therapists, doctors, and teachers pressure us into doing ABA. They feel it’s the only answer, as if there’s a problem to be solved. Every autism parent seems to be doing it and if you’re not, you feel you’re probably the one who’s wrong. After all, they can’t all be wrong can they? But once you realize the source of ABA, and what it really does to your child, you may reconsider. Once you hear the voices of autistic adults you may realize ABA isn’t the answer.

“[Autistic adults] speak up because we know that our identity and our humanity cannot be taken away, something people who don’t share our neurology seem to believe can happen.” – Amy Sequenzia in her post, My Thoughts on ABA

“What looks like progress is happening at the expense of the child’s sense of self, comfort, feelings of safety, ability to love who they are, stress levels, and more. The outward appearance is of improvement, but with classic ABA therapy, that outward improvement is married to a dramatic increase in internal anxiety and suffering.” – Sparrow Rose Jones (autistic)

When I was in the planning stages for my post More Perspectives on Applied Behavior Analysis, I asked, “What are your thoughts on ABA?” in a social media group consisting of adults on the spectrum, professionals, and parents of people on the spectrum. The responses blew my mind. I came to the deep realization that parents of autistic kids really need to listen to those who’ve gone before our children (and I don’t just mean Temple Grandin). I’ve written some of their replies within the body of this post, and here are a few more:

“I wish ABAs got more training in sensory issues.” – A. Creigh Farinas (autistic)

“There is also a high price that autistic children can pay when ABA is practiced in such a way that compliance itself is a goal – abuse, physical/sexual/emotional.” – Patricia Gabe

“Applying therapies and asking someone to conform to a standard in a one size fits all attitude can strip a person of their natural strengths.” – Nancy Getty

If you’re looking for other autism parents who don’t agree with ABA practices, you can read Emma’s Hope Book .
In the post, Tackling that Troublesome Issue of ABA and Ethics, Ariane writes, “One of the best arguments against ABA is Michelle Dawson’s article, The Misbehaviour of Behaviourists: Ethical Challenges to the Autism-ABA industry.  If you google Applied Behavioral Analysis you will see glowing reports of its efficacy for more than 30 pages.  I actually stopped at the 30th page only because I didn’t have time to continue.  The first book I read on the subject of Autism was Catherine Maurice’s Let Me Hear Your Voice which details how ABA saved two of her children’s lives from Autism.  (I use this language as it is the language employed by the author.)  Catherine Maurice also likens Autism to cancer and ABA as the necessary chemotherapy.  The whole acceptance model obviously is not employed when thinking in these terms, how could it be?  And perhaps this is the single greatest problem when discussing ABA.”

In the above mentioned article, The Misbehaviour of Behaviourists, it mentions how Dr. Ivar Lovaas (developer of ABA) worked with Dr. Rekers to remove homosexuality from children. This is how ABA began. I’ve heard of this throughout the autistic community, but this gives much more detailed information about how it came about.

The autistic adults I’ve heard speak (may be non-speaking, but use communication devices) about their autism feel it’s a large part of who they are, and to try to remove or cure it is an assault on their personhood. As I said earlier, there is no better way to learn about autism than from those who have gone before our children.

There is much more I have to say about ABA, you can read more of my thoughts in the links I’ve mentioned, My Thoughts on Applied Behavior Analysis and More Perspectives on Applied Behavior Analysis. I’ve also written an article for an anthology that will be published by a professor at Michigan University later this year (I can’t give away everything I’ve written in that article ;)).

Let’s accept who our children are so the world can accept them.
#AutismAwarenessDay #AutismAwarenessMonth

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