what works for your Autistic child: when therapies and programs don’t fit

what works for your Autistic child
What does the Autistic child want? I wonder if this question is ever asked. Well it’s asked, but what percentage of the time? And, frankly, there are therapists and parents who never ask this question or acknowledge the child they’re working with or raising has opinions all their own.

It’s as if children who have disabilities necessitate therapy 24/7.

Often the child behind the word “Autistic” is forgotten about, and people try to therapy the Autism right out. Thought isn’t given to what the Autistic child might want to do, whereas with a typical child, their concerns, desires, dreams, and preferences are usually contemplated when deciding how that child will spend their time. Not so with the child who has Autism.

An example of this arose as my son’s school year approached. A school therapist was doing a home visit before school began, and she asked, “How has Jeremiah done this summer?” I told her he’d done really well during the last part of the summer, until his sister went back to school (that change threw everything off kilter). She responded, “I’ll be honest, I was worried about how he would do without ESY (Extended School Year – summer school). Although it’s a different schedule, having that time of consistency helps kids.”

The reason Jeremiah didn’t do ESY this past summer was because of that “different schedule” she mentioned, and as for “consistency,” there really was none. In the summer of 2012 we put him in the ESY program for the first time. Some parts of it were good, some parts weren’t.

The Bad: A haphazard, confusing schedule. Although there were many positives about ESY, we found this so negatively impacted Jeremiah and our family that we decided not to do it again. Our school district has an inability to think through the make-up of special needs students, specifically the needs for consistency and routine. I would think if a program were designed to reach children with special needs, they would build it around their inclinations, however our district didn’t.

ESY was only held two mornings a week, whereas during the school year, Jeremiah and his classmates attended school four mornings a week. The kids began their summer like everyone else and then their world was upturned, ESY began. They went for a few weeks then took a break for two weeks and went back for a couple more. Then ESY ended and they waited out the rest of the summer “like every other child.”

But wait, it wasn’t like every other child because everything they’d come to rely upon was flipped on them. Kind of like how some school districts are choosing to add new fall breaks and teacher work days here and there, except as I said, this program was created to meet the needs of children with disABILITIES, not typical children.

It was horrible, we struggled getting him into the new routine in a new place, with new teachers, and new students. Once he settled in, they waylaid Jeremiah and his fellow classmates with a break – a break in the midst of a short summer program. Don’t ask me. Then back to ESY it was, another adjustment, and then off for more summer fun. Not so much. Jeremiah was confused and irritated, it took days to get him to relax into being at home every day, and the times when he had to go back, oh wow. It wasn’t productive and there wasn’t enough positive outcome to consider doing it again.

Plus, what did Jeremiah want to do that summer? I know ESY can be beneficial for kids, I’m aware there are positives, and I don’t think two to three mornings of ESY during the weeks of summer are a bad thing. However, when we consider how Jeremiah felt during all those transitions, I can imagine he was saying he didn’t want to go. Well, more like, “Once you get me into a routine for the summer, keep me there.”

That summer what Jeremiah wanted wasn’t on the forefront of our minds, we were focused on what we were told would be best. But when ESY was over, we agreed he wouldn’t do it again.
often times the child behind the word Autism is forgottenThere are some positives to ESY.

The Good:

Different teachers. Only one of his therapists from the school year was in the ESY classroom. Exposure to different teachers is great, but who the child is must be kept in mind. Each year your child will have a different teacher (unless they’re secluded in a special needs classroom) so teachers change, but we don’t need to force it on our children more than necessary. However, if your child can handle it (given a little time and assistance), it will most likely benefit them.

Different students. Your child will always be exposed to new people, so this is an excellent setting where they can be around a more diverse group of kids. (Although, I’m a BIG proponent of inclusion, and in an ESY program you’ll only have children with special needs, no typically functioning children.)

Different school. Your child will be going places, new places, all the time, so this will help with those changes of venue. If your child’s in regular education classrooms, they’ll be switching schools; preschool to primary, primary to middle school, middle school to high school, and they may have a job at some point. In this way an ESY program could be helpful.

——-
The dynamics found in ESY will stretch a child, but we want to make sure we’re thinking about the child. If an Autistic child is absolutely, or even minutely irritated by a summer program, why do it? It’s summer. Does a typical child get to enjoy summer break? Most do, most aren’t forced into a day camp they hate every day of summer.

Neither should an Autistic child be forced into something they hate.

Adversity makes us grow, it makes children grow, and at times it can help the Autistic child, but at what cost? If an Autistic child is truly miserable how beneficial is it going to be? And, if it’s not done right it can harm the Autistic individual.

I was recently asked by a professor at the University of Michigan to submit articles to two anthologies she’s putting together. One focuses on how certain therapies harm Autistic people. This is a real issue. Just because someone tells you to do it, that doesn’t mean it’s right. There are many therapies that are accepted as “normal” for Autistic people, and many have been harmed through its process.

We have to think about the person behind the Autism.

We have to consider what they want. We have to look at their positive qualities, not just the negative ones. There are ways to help the child who has Autism, but it may not be in the way most Autism parents or therapists consider the “best way.”


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what if my Autistic child never says, “I love you”?

what if my autistic child never says I love you_2*Please be sure to read to the end if you’re offended by the words “grieving process.”

When a child is diagnosed with Autism, often times there’s a grieving process for the parents. Their original expectations are drastically altered, sometimes in one moment, sometimes over the course of months or years. Grieving is important, if we don’t acknowledge how we feel about something deep at the core, we will never truly deal with it, and it may spring up at another inopportune time.

I’ve heard many Autism parents grieve the fact that they may never hear their child say, “I love you.” Like I said, grieving is okay, I understand it, I felt the same way, I said those words. I was saddened that I wouldn’t hear my son, Jeremiah, tell me those words every mom wants to hear. But then it changed.

My attitude changed because I’m privileged to have learned (and will forever be learning) from Autistic adults as well as other Autism parents who see the positives in Autism. I hadn’t been focused enough on those positives, I was seeing too much negative. My grieving was going too long,

I was in the “poor me” mentality.

While there’s a time and place for those feelings for some of us, it’s just that, a time and place for them. There are many moments when I’m frustrated, when I wish Jeremiah could tell me what he wants so he isn’t hitting me, banging his head against me, or trying to scratch me out of anger. I wish there wasn’t regression, I wish that if I stopped teaching and directing for one day that Jeremiah would still follow the “rules” of the house. I grieve for myself, that I don’t have down-time when I desperately want it. I grieve because no one seems to completely understand the life we live.

But life with Autism is so much richer when I see the wonderful, and there is an abundance of wonderful.

I can acknowledge those frustrations and grieve, then I need to move on and recognize what’s beautiful in him.

At some point in my journey through Autism, I heard an Autism mom say, “My child says ‘I love you,’ it’s just in his own way.” She was right! This was a profound moment for me. A moment I was looking for, yearning for, was already in front of me. Jeremiah was already telling me he loves me, I just wasn’t listening. This was my problem, not his. Can I tell you the joy I felt? The angst that was lifted from my heart?

This has happened on more than one occasion, this heavy feeling of “He will never” being lifted from me and being turned into something beautiful and special.

Yes, there are obstacles that come with having a child with special needs, but there are also so many exceptional moments, and life lessons we learn that no one else gets to. When Jeremiah (age five) does something he’s never done before, something that an infant or toddler might do, it’s euphoria. I experience moments no typical parent witnesses. When Jeremiah laughs at something someone said, it’s pure joy. When he communicates by leading me by the hand or using my hand to point to something he wants, I’m elated.

See, Jeremiah does communicate, it happens to be in a different way than a typical child. He tells me he loves me every day when he “asks” me to do something for him, when he smiles at me, when he laughs at the silly nickname I’ve given him, or when he sits in my lap. In all of these moments and so much more, he’s telling me he loves me.
I love you can be spoken in every language

Not all of you have a child who will hug you, or look you in the eyes and smile, or respond with a grin when you say his nickname, but I hope you can find the ways your child tells you he loves you.

An Autistic adult made a list of things typical people should just assume about the Autistic individual. I’ve tried in vain to go back and find who wrote it, but can’t, however, I do know it was written on an Autism Facebook page that supports positive thinking in regards to the disABILITY. On the list, she wrote that we should assume that the person who has Autism loves us if we love them and show them we care and love them.

How does your child say “I love you”?

Please feel free to share this article if you know someone who would benefit.

*A note about my terminology. Autistic vs. Has Autism – In the adult Autistic community I’ve heard it said countless times that they prefer to be called Autistic. The parents of Autistic children say “use person first language.” I respect the Autistic adults opinion, as they are the ones living with what my son has. I also understand where the Autism parents are coming from, I felt the same way. I used to only us the phrase, “My son has Autism,” but I know use both references interchangeably. I don’t feel there’s a right way or wrong way.


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Autism Birthdays

Jeremiah turned five today. So, here’s the birthday deal. Jeremiah doesn’t like many foods (like, um, two at the moment) and doesn’t like cake, but this year I wanted cake. (I apologize to my sweet boy for the piddly cupcake, it’s your Dads fault.)

I get tired of not being able to celebrate my sons birthday like every other child. No party, except family, because it would wig him out and he’d hate it, not a big to-do because he wouldn’t notice. So, I at least wanted the cake. I did the cake. He smelled the cake, because, well, that’s what he does. He smells most things he comes in contact with. It’s cute…for now…at age five.
Jeremiahbdaycollage9.14

He smelled that cupcake, and actually licked it which was quite a celebration, he then got down from his chair, went to the fridge, opened said fridge and got out the eggs. He wanted a fried egg, so fried egg is what he got! Happy Birthday with a fried egg. That’s him on the right, eating an egg. This is our life. Life is good. We find the good.

*For those who might think “Oh, that poor child doesn’t get a birthday party,” don’t worry, Jeremiah is plenty spoiled in every other area of his life. 😉

life before and after seizures (Autism)

life before and after seizuresAutism + seizures = parents on edge, constant concern, and questions, questions, questions.

When Jeremiah was an infant he had seizures, he’s adopted and after he came to us we never saw more evidence of seizure activity. That was until he was about two-years-old. One night we woke up to this frightened cry, when we opened Jeremiah’s door, he toppled out crying, terrified, and shaking. Now, some could say it was a nightmare or a night terror. It felt different, I can’t explain it, but my Mommy instinct knew it wasn’t a nightmare (more about that later). Plus, afterwards he had significant regression in his abilities and understanding.

Until last week we hadn’t noticed any more seizures, but the thing is, there are absence and petit mal seizures. This means there’s no shaking, and they can often be invisible. www.rightdiagnosis.com says, “[In the case of petit mals] The person will stop moving or talking and stare into space for a few seconds. Some muscle jerking and twitching may also occur. Once the seizure has passed the person recovers quickly and carries on with what they were doing with no memory of the episode. These seizures can occur occasionally or very frequently, hundreds per day in some cases.” These seizures usually last around thirty to forty-five seconds. When Jeremiah had the episode two years ago, this is what they thought might be happening.

Last week he had another seizure.

It was frightening. Both kids were in the backyard and Payton was having a meltdown because she’d been asked to do something, and in her mind, she wasn’t able to complete the task. Jeremiah was out in the  grass staring at her, not too odd because he’d really been paying attention when she’s crying lately.

Justin brought Payton inside and called for Jeremiah to come in, but he didn’t move. Justin waited a minute and stuck his head out the door again, calling for Jeremiah to come inside and eat. Jeremiah usually responds well to this, but he still didn’t move. Justin went outside and picked Jeremiah up to bring him inside, at that time he didn’t notice, but he would later realize that Jeremiah was stiff when he’d carried him in.

Justin and I both had our attention averted elsewhere, on making dinner and on the girl who was throwing a fit about something ridiculous, so we didn’t notice until a little later that Jeremiah hadn’t moved on his chair. Justin had placed him on his chair standing, holding the back of the chair, because that’s what he does all the time. Finally it clicked that Jeremiah hadn’t moved and was still standing where Justin had placed him.

We quickly went to him, I felt his arms and there was a slight tremor in them and he wouldn’t look at me (as opposed to some people with Autism, Jeremiah will look at us when we talk to him) and was staring off into space, he wasn’t there. Justin picked him up, took him to the couch and began removing his clothes, we were thinking he’d been bit by something and it was causing an adverse reaction. We checked his entire body, but didn’t find anything.

Everything was so muddled, there was screaming in my ears, FEAR.

At some point I realized that he may be having a seizure. He then curled up in Justin’s arms in a fetal position and shoved his fists against his eyes for a minute or two, I don’t know how long, time drags when you’re terrified.

We then started his favorite movie to see if he would turn and look, and he did within a few seconds. That was a relief! I held him in my lap, wrapped him in blankets and he stared at the t.v. The seizure itself lasted about seven to ten minutes, which the doctors would later tell us was far too long to be a petit mal. He finally did come around to fairly normal, but we were fearful the seizure would cause regression, because that’s what happened the last time he had one.

All we could do was wait. And wait. And wait.

We picked him up the following morning at school and when I asked if he seemed his normal self, the aide nodded her head in a circular motion, meaning kind of. The teacher said he was lethargic. (We sent him to school because he was doing well, and for him, being out of routine is the worst, and we are confident his teachers are skilled enough to determine whether something odd is happening with Jeremiah.)

That day at home was near normal, but we still needed to see what he’d do in different situations and assess whether he still understood as much as before. As days passed we knew he was where he’d been before. Thank God!
The doctor is referring us to Children’s Hospital, which will take a few weeks, or longer since she forgot to put the referral in. He may need to have a twenty-four-hour EEG done, which makes me extremely nervous. But, I would really like to know if he’s having seizures more often than what we realize so we can do something about it. He’s had so many major regressions in his short life that I’ve always wondered if seizures were the cause, for a long while I was convinced. Yet, his skills and understanding have only grown in the past several months, so that’s wonderful.

The reason an EEG makes me nervous is because we’ve been through it before. After that episode about two years ago where I was sure Jeremiah had a seizure, they sent us to the local hospital for an EEG. No preparation was made for a child who has Autism, and it was a horrendous experience. 

Just try to take an Autistic child to the hospital, put them in a strange room, with strange people, then place dozens of sticky electrodes to their head, and have them relax while the brain is read. HA!!!! He screamed and writhed, livid because of what was being done, confused because he couldn’t understand what in blazes was being done to him. He screamed and fought until he fell asleep, but the techs were so irritated that after he’d only slept for ten minutes they decided to end the test and took the electrodes off his scalp. No evidence of seizures, because, see, the person has to have a seizure WHILE the test is taking place.

So, here we go. I thought that with my rare disease flaring up, and Autism, and my husband owning his own business life was full enough. Guess not. However, I’ve seen God carry us through the really tough, the impossible, and I know He won’t fail us.

*Another great example of seizures was shared this week by Faithful Mom of 9 on her blog, you can read about how her daughters seizures presented here.


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what if my special needs child lives with me forever?

what if my special needs child lives with me forever
I love the site, Not Alone. You can understand why just by the name alone (Ha!). Sometimes when we’re riding the special needs bus we feel alone. We feel no one else really gets us, our child, or our family. This is one great site that supports parents who feel such.

Todays post is on the shorter side, but that’s because I would like you to read two posts. I know I’m so mean!

On Not Alone, Ellen Stumbo wrote a perceptive article called, What if She Lives with Us Forever? Some of you face the possibility that your child will live with you forever.

We faced the reality about a year ago that Jeremiah will most likely live with us through his adult life. At first the idea was overwhelming. Typical parents sort of expect their children to grow up, move out, and then it’s the parents turn to play. Not so much when you’re a special needs parent, but I still struggle with those selfish feelings of wanting more “me” and “us” time.

Special needs parents are always on alert, there is rarely down time.

I do need more supports, and we’re working on it, but my view of Jeremiah living with us forever has changed. I feel a lot like the woman who wrote this article. I actually want him to live with me…IF that’s okay with him. 🙂 I adore him, I don’t know what my life would be like without him near because so much of it is enveloped in him. Selfish reasons I know.

It would be awesome if he was able to function in society, get a job, live alone or even better, find someone to love and spend the rest of his life with. That would be awesome! But, I can’t depend on that happening. This isn’t the typical life. And that’s okay!

Here’s what Ellen Stumbo writes on Not Alone, I can just about guarantee it will buoy your heart.

“Call me crazy, but one of the first thoughts that crossed my mind when my daughter was born with Down syndrome was, ‘Will she live with us forever?’

When my oldest was born, a typical baby girl, those thoughts would have felt so…outrageous! I mean, who thinks about their child moving out the day they’re born? But with Nichole it was different, Down syndrome rocked me and I was immediately wondering if she would ever live independently, if she would ever get married, if she would ever have a job…

I hope she still wants to do this with me when she’s 15, and 21, and 30 and forever.”

You can read more of what she wrote here.

Do you think your child will live with you forever? How do you feel about it? I hope todays post encourages you. Have a good one!


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I have Autism and the world treats me different

I have Autism
I have Autism, and the world treats me differently.

If your child has Autism, you know what I’m talking about. The stares, questioning looks, noses stuck so far in the air you’d think they were preparing for a dental exam, questions, comments, avoidance, accusations, recommendations, and rarely, smiles.

There are a variety of ways others respond to our Autistic children. A persons perceptions are sometimes based on their previous experience with Autism. This can be problematic because every child with Autism is different, they all have varying abilities.

If someone knows a person who has Aspergers (a form of Autism), they may expect another child with Autism to act the same way, trying to fit them in a peg hole. For example, our son, Jeremiah, has nonverbal Autism and has struggled developmentally, he is nothing like a child who is on the other end of spectrum. Some people assume he can talk, or understand directions that aren’t in his every day life. They assume we can take Jeremiah to events and he’ll stand next to us. It goes on and on.

They don’t realize that Jeremiah isn’t every other child on the spectrum.

A few of my friends have Autistic children who have more abilities than Jeremiah. In one area, they act very much the same, but in others, vastly different. One friend took her son to a get-together with friends, her son stayed near them and they were able to converse with others. What a strange and utterly impossible idea. For us. What would that be like? We don’t know because it’s never happened. Those who don’t have a child with Autism or aren’t immersed in the intricacies of it simply think that our children don’t behave and that we should do something about it. Ha! I give them a day to try, well not really, because they would want to strangle Jeremiah, and it would consummately devastate him.

Many times people say to me, “Autistic people are SO smart.” I agree, they are smart, but we don’t know if Jeremiah is a savant with a “special ability” that’s unique to him and him alone, nor do we expect it. He used to put shapes in the shape sorter faster than any adult – or at least I would bet on Jeremiah if it were a race, but he no longer plays with the shape sorter. As I’ve said here before, Jeremiah is ALWAYS in flux. Part of this expectation (Autistic people are so smart) comes from a person’s experience with a child that was able to speak and communicate in some form. Jeremiah does not.

When people see Jeremiah, it’s not obvious at first that he has a different ability, unless of course he’s waving his hands in the air like he just don’t care. If they’re around him for any amount of time, they should pick up on the fact that he’s different, doesn’t talk, doodles obsessively, stims (waving hands), and if it’s a bad sensory day, he’ll hit his head compulsively or try to bang it on the nearest available person.

And example of how others are treating Jeremiah is when we took the kids to the fair last week, and one of the employees said to Jeremiah, “Hey dude, high-five?” and held his hand up. I kindly said, “He has Autism and doesn’t talk.” Frankly, the guy seemed a little offended – okay, sorry he can’t give you a high-five. He said, “Hi,” and I said “Hi” for Jeremiah. The patrons standing behind us in line stared down at Jeremiah, no smiles. I don’t mind staring IF the offender smiles. 🙂

Our daughter, Payton, said, “Mom, those people are just staring at Jeremiah!” Payton has a very tender heart toward her brother, she’s his little protector. You can read more about how their relationship here. Sweet Payton couldn’t figure out why someone would stare at Jeremiah. I said, “If they’re smiling at him it’s okay.” She said, “They weren’t, they were just staring, like this,” then gave me an example. I said, “Okay, it’s not nice of people to stare, and if someone is ever rude to Jeremiah, you stand up for him.”
don't stare - smile and treat me like everyone elseUnfortunately, the stares are going to worsen. Jeremiah is growing and it’s more unacceptable than it used to be that he’s riding a wagon through the Farmer’s Market, or that he’s waving his hands in the air, he isn’t talking, his cry sounds like an infants, he’s screaming. He’s standing out more and people are noticing, hence some of them are gawking.

When we’ve had to explain to others that Jeremiah has Autism, we’ve received several reactions. (Usually the explaining comes because someone says hi to him). Someone knows someone who has Autism, they offer advice, they stare, not really knowing what Autism is (how this happens really boggles my mind), smile and move away, uncomfortable.

While on vacation this summer, Jeremiah was swimming. A woman who floated by him said “Hi”. Justin said, “He has Autism and can’t talk.” The woman smiled and said, “Oh,” and swam away. Hmmm. Autism isn’t contagious. Really.

Another instance came about when Payton was at the dentist recently and the hygienist asked if she has any brothers or sisters. Payton said, “I have a brother, he doesn’t like to play with me because he has Autism.” The hygienist replied, “Oh, good.” Did she think Payton said, “I have a brother, he’s ARTistic”?
be somebody who makes everybody

Others responses to Jeremiah’s Autism have been flying in my face recently. Just the other day we were at my husbands High School reunion and we were asked, “Why would you adopt a child who has Autism?” Wow, what do you say? There were several retorts I could have thrown, but I didn’t feel like his question was directed in spite, so I told him why (the nice version). I honestly wish that others knew how awesome Jeremiah is, how very special he is, how I wouldn’t want to live my life without him, how I can’t imagine my life without him.

Here’s a great post that explains why having a child with special needs is so awesome: 7 Reasons Why Having a Child with Special Needs Makes Life Better.

Our own family has had some interesting, sometimes unsatisfactory responses to our family. I can only imagine it’s because our family is so different, first we did foster care (we adopted both of our kids from foster care), and then Autism came into the picture. Because of these two major life altering scenarios, we do life differently. And so, we’ve been left out of holiday get-togethers. Family living in the same town has left us out of these celebrations. We can only surmise that it has to do with our kids, and now primarily because of Autism. Forget about my feelings on the matter, believe me, they run deep, but it isn’t fair to my children.

I have Autism, and the world treats me different. I have Autism, and my family treats me different.

The only thing that’s going to make any difference is the Autism community kindly educating others on Autism. So, go out and educate. Go out and spread the smiles. Go out and share with the world how awesome your Autistic child is.


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what to communicate with your child’s teacher: Autism in the classroom

communicate with your childs teacher
School is starting soon. I think I just heard YIPEEES!!! from several of you. 🙂 Autism parents might be a tad more excited than the average parent for their child to go back to school after summer break, as that routine and consistency can make a night and day difference for our children.

I don’t know about your child, but most children with Autism are constantly changing. Our son, Jeremiah, gains skills, loses skills, says a word and then we’ll never hear it again, he’s regularly in flux. It’s hard enough to keep up with him at home, but then add school, progress, and regressions and

it can resemble one big spider web.

There’s a solution that greatly helps us traverse that spider web with agility, and helps everyone dive into a new school year with an exceptional start. What can you do to keep positive momentum going at school?

COMMUNICATE 

You don’t have to share the nitty-gritty of your every day life, like the stories that make your friends cringe (well, then again your friends probably cringe at many of your stories because life with an autistic kid is, well, different)…so I take that back, just don’t share about your relationship with your in-laws. 😉

Most of you have an IEP for your child, but this gets into the every day, moment by moment life of your child. Many times the IEPs don’t get to that, they don’t deal with the day to day changes and individuality of our children.

Here are some ideas of what to mention to your Autistic child’s teacher, aides, paraprofessionals, and therapists before school starts and throughout the year:

  • Communicate what your child is doing at home. The good and not so good. Are they experimenting with new toys? Do they have new sensory needs? What have you noticed that’s different? Are there situations at home that are troublesome, maybe some issues you need help working through?

 

  • Communicate what’s working. Swimming? Trampoline? Rolling in blankets? Is there a special corner your child loves to be in? Could the school recreate this setting in the classroom to help your child calm? Are you using phrases at home that seem to help your child transition (e.g. “FIRST we’ll go to the bathroom, THEN we can color some more.”)?

 

  • Communicate how your child is interacting with others. Are they using new words, signs, or gestures? Are there new sounds or phrases that someone else might not understand? What is your child understanding? As our children develop they understand more of their world, but at the same time other concepts become more misconstrued, so explain what’s going on with your child in this area.

benefits of communicating with teachers

Sharing with the staff about your Autistic child will help in many areas. You will be able to get on the same page, working in the same way both at home and at school. The staff will know what you’re doing at home and be able to incorporate your ideas at school and vise versa, this will bring a cohesiveness to your child’s life, making it more predictable. The teachers can give you ideas on what to do with your child at home to help make life calmer and to help your child develop.

When I say, “teacher,” I’m referring to their teacher, aide, paraprofessional, and therapists. You can talk to each one individually, but that takes up an incredible amount of time, so choose the one who works with and understands your child the most. If you’re able to talk in person with a paraprofessional, you can email the rest of the team regarding what you spoke about.

Be sure to keep everyone in the loop.

You don’t have to monopolize the teacher’s time, this can happen so easily, it especially does for me because our son’s teacher has a teenager with Autism. We could talk for hours. Try to choose a time when the teacher is available and doesn’t seem rushed, and if it’s a pressing matter, she/he will probably have a few moments. If it’s not pressing, you can email or chat on the phone when it’s convenient for them.

Our family has really benefited from conversing with everyone who works with Jeremiah.

We’ve all been able to work together to problem solve and most of the team is willing to take ideas from the other and incorporate what works and what’s best for Jeremiah.

Have you been able to talk with your child’s teaching team? Did it make a difference? If you haven’t been in communication with the teachers before, do you think it would make a difference?

You can receive every post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, you can do this on the web version. You can also follow me on Facebook, Twitter, and Pinterest for more information and links. Happy school year!

6 tips on taking an Autistic child on vacation

taking an autistic child on vacation
Autism + vacation = more stress than staying home. Well, sometimes. We met family in Ouray, CO this past weekend. We had a great time, but preparations were a forethought to make it so.

When you have a child with Autism, it’s especially important to plan your vacation. Be sure to read through all of the points, as I saved the most important one for last. 😉

Autism abilities differ in each person, so be sure to take into consideration your child and what they understand. Some children with Autism won’t understand when you begin talking about a vacation that’s far into the future, if this is true, you can begin talking about it a couple days before. So, on with the tips:

  1. Try to make your plans as concrete as possible in order to prevent as much unknown as possible. I know, plans fail, but with an Autistic child, routine is essential, so making a plan and sticking to it will help you make it through your vacation.
  2. Talk about what your vacation will be like. Talk about it often and be open to questions. If there are answers you don’t know, admit it and brain storm what you can do IF…
  3. As you approach a destination explain where you’re going and what you’ll be doing. This will help any child with their anxiety about the unknown.
  4. Draw or print out a map of where you’re going. When we take long trips I’ve drawn a map of where we’re going, and labeled the dates when we’re going to be there. I’ve done this for my daughter who doesn’t have Autism, as our son wouldn’t be able to understand something so complex.
  5. Take breaks during your trip. Let your kids get out and move.
  6. Consider your child’s sensory needs. This is a big one! Some children have high sensory needs and need lots of input, some don’t want much at all and avoid sensory stimuli. Even the children who have high sensory needs require time when their world is quiet. Be aware of noises, lights, bedding comfort, and other possible irritants.

On our last vacation a considerable amount of time was spent with family. I feel a tad bit bad, but we made our plans and anyone could join us if they wanted. We have to vacation this way or NO one will have fun. Jeremiah has high sensory needs, so we had to meet those needs each day if we wanted any calm (meaning avoiding crying, screaming, and intense jumping – yeah, we were on the third floor). About that jumping, I asked that we be put on the lower floor because I knew Jeremiah’s tendency to jump would irritate others, but the managements response was, “The floors are well insulated.” Well then, if you get a call at 6:30am, don’t complain to me.

There are certain activities that our family enjoys doing together, and take care of Jeremiah’s sensory needs. A couple of those are four-wheeling and swimming.

doodleAs for four-wheeling, I can only speak for our immediate family and the big smiles on my parents faces, but we had a BLAST! In this photo Jeremiah is doodling, it’s his “thing”. Some kids with Autism play with string, Jeremiah doodles on his magna doodle. It goes everywhere – obviously.

 

We travel to Ouray fairly often, so we know where the playsets are. Jeremiah loves swinging, so we spent time in between activities doing this while others were shopping downtown. Jeremiah was able to spend a little time walking the old-town Main Street, but not much, so this gave him another outlet to meet those sensory needs. Yes, he has HIGH sensory needs, and even more when in a new and different environment.

We also went swimming, which Jeremiah loves. Swimming meets many jeremiah swimmingsensory needs for our children, and the more you can get them in the pool the quicker they’ll learn how to swim. Here you can read my post on 4 Reasons Why You Should Teach Your Autistic Child to Swim.

 

 

Jeremiah comfy

 

We took Jeremiah’s blankets and the movies he likes to help the condo feel more like home.

 

Overall we had a great time, but much planning went into making it an enjoyable vacation. We also try to be aware of what Jeremiah needs and what makes him comfortable. I hope this gives you ideas on what you can do on your next vacation.

What special things have you done for vacation to help your child adjust? How do vacations go with your Autistic child? Any other advice on vacationing you’d offer to parents?

You can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you’re on a mobile device, you can do this on the web version. You can also follow me on Facebook, Twitter, and Pinterest for more helpful information and links. Happy vacationing!

 

how to teach Autistic children to swim

how to teach autistic children to swim
Last week I wrote a post about the importance of teaching our children with Autism to swim. That post, 4 Reasons Why You Should Teach Your Autistic Child to Swim, has been shared over 3,000 times! If you haven’t yet, be sure to check it out. The number one reason is to prevent drownings, go find out why.

In that post I promised that today I would share some ideas on how to teach an Autistic child to swim. So here we go.

Our son Jeremiah (nonverbal and doesn’t understand directions unless it’s part of his every day life) is learning to swim. He’s almost five, and I wish he could take off across the pool by himself, but he isn’t. We expose Jeremiah to water as much as we can. Whenever we stay at hotels, we make sure they have a pool to meet his sensory needs, we put him in swim lessons the last couple years, we visit pools in town when we can, and we’ve been swimming in the lake a couple times.

It’s really important for children with Autism to be exposed to water.

This is to help them become comfortable in it and don’t freak out when they fall in. Because they’re so interested in water, they’re much more likely to drown than the average child, and the first step is getting them familiar with water.

You might want to do this without a life jacket at first. It depends on how old your child is, their activity level, and your ability to be constantly holding them up in the water. If you do use a life jacket, be sure to go without it sometimes (making sure you’re always within reach, preferably holding them up, until they can float or tread water on their own).

When Jeremiah was younger we didn’t use a life vest, but as he got older and wanted to explore more, we put a life vest on him. We’ve now worked into him having it off more than on. Many swim teachers would disagree with the use of a life vest, as this can teach the child to rely on the vest, and the child does not  have a healthy fear of the water. They can come to depend on the flotation and not realize they can go under and not bounce back up. We found that alternating, going with and without the life vest, worked well for Jeremiah.

I talked a little about this in the post on why you should teach your Autistic child to swim, but we never taught Jeremiah how to close his mouth and hold his breath when he went under the water.

Every child with Autism is different, they all have differing abilities.

With Jeremiah, he doesn’t understand directions that aren’t a part of his every day life, and even those were difficult for many years (i.e. only in the past few months has he understood how to hand us something when we request it – anything besides his PECS pictures has been difficult for him). So, we weren’t able to explain, “Hold your breath,” or “Close your mouth,” or “Don’t breathe in your nose.” How do you teach a child not to suck in a nose-full of chlorinated water? Surprisingly, Jeremiah’s done much better at learning to keep his mouth closed, and not choke when going under, than many other “typical” children. He learned VERY quickly what not to do. He’s only coughed up water a couple times.

This is the same with kicking his legs and moving his arms in the pool, we didn’t move Jeremiah’s legs, but it’s the first swimming movement he caught onto, second was the movement of his arms. We can now place our hand under his tummy and he will “swim”. Not enough to keep himself afloat, but he’s getting there.
Drowning is the leading cause of death in Autism

You may be wondering if we’ve had Jeremiah in swim lessons, we did, he’s been through two classes. However, I don’t really feel they were extremely beneficial. I believe if we had a better instructor (as the one in the video below), Jeremiah may have progressed more, but in the end, he seems to do most things at his speed anyway. I do feel the swim teacher was helpful in that it was someone he didn’t know, touching him and talking to him twice a week. It’s important for children with Autism to be around others and in new environments, working with their comfort level in mind.

The concept of “First/Then” works really well when helping a child learnt swim. (Okay, it works well in all areas of the Autism life.) First/Then is done best when taught in the home environment before introducing it in a new and unfamiliar one.

In Jeremiah’s classroom and at home, we use First/Then to let Jeremiah know what’s going to happen in his world, to prepare him. It’s also used if he doesn’t like a particular activity that he has to do. So, if your child doesn’t like to go to the bathroom, you can say, “First we’ll go to the bathroom, then we’ll jump on the trampoline.” You can start with shorter sentences, depending on how much your child understands. When swimming, you can ascertain what your child’s favorite activity is, whether it’s jumping in the pool, splashing, or going under the water, and then use the First/Then concept; “First we’ll kick our legs, then we’ll jump off the side of the pool.” (You can see the use of this in the video below.)

In this video, the swim instructor, Tara, uses some really great techniques with Daniel: PECS (the pictures on the boards are a Picture
Exchange Communication System – also best if learned in the school and home environment first), and First/Then as a reward.

A few things I love about this video are:

  • Daniel is nonverbal like my son and so many of your children.
  • The progress Daniel has made since the first lesson is inspiring.
  • Tara uses PECS, which Daniel is familiar with, to help him understand what’s coming next, which is paramount to the Autism brain.
  • Tara incorporates regular learning in her lessons (talking about the color of rings).
  • Tara’s consistent, each class is ended with the same three elements.
  • And this part is cool! – She says that once they teach a child to blow their nose UNDER the water, the child can then BLOW their nose when they’re out of the water. 🙂
  • Tara teaches Daniel how to jump into the pool. In the video, Tara explains why this is so important.

Really makes me wish we lived in Maryland!

I hope this gives you some ideas on how you can teach your Autistic child to swim. Some of you can’t afford lessons, and I believe you can try this on your own if that’s the case. And, if you don’t have access to exceptional swim instructors these are some ideas you can take to your child’s teacher if they are in swim school.

Have you taught your child to swim? Do you have any tips to share with us? have you struggled with teaching your child to swim? What were they? I love comments, so please share!

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You can receive every 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. For more helpful information and links, you can follow me on Facebook, Twitter, and Pinterest. Happy swimming!

“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?

You can receive every post made to Lovin’ Adoptin’ by subscribing in the upper right corner. If you are using a mobile device, this can be found on the web version. You can also follow me on Facebook, Twitter, and Pinterest for more helpful information and links.