how will the paramedics know my child…has autism, can’t talk, has severe allergies, has a serious illness?

how will the paramedics know

When you have a kiddo with autism, one who’s nonverbal or one who doesn’t have fluent language, it can be really scary at times. One of those situations I worry about occasionally is what would happen if we were in a car accident and Justin and I were hurt. What if we were so incapacitated we couldn’t tell the paramedics that Jeremiah has autism, he can’t speak, he can’t follow their directions?

Not something we want to think about, but it’s best to be prepared.

So, when I came across these medical seat belt covers, I was thrilled. The first ones I saw were homemade, which you can definitely do, with a sort of nylon fabric and a permanent marker. If you’re not the best sewer (pointing finger at myself), I found a website where they sell them. It’s in the UK, but you can pay with a US credit card, no problem. (Don’t laugh, I didn’t know.)

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You can find them here at Doe Doe’s Bibs and Beyond, or on her Facebook page

You can customize them for anything you want; conditions, illnesses, allergies. So cool. Please share this with others, as I know there are many families who are concerned about this issue and would love a solution like this. Thanks!

The administrator for the Doe Doe’s Bibs and Beyond Facebook page is very sweet and will answer your questions quickly. She’s getting swamped though, so be patient.

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Nonverbal Autistic Children Have Something to Say

Nonverbal Autistic Children Have Something to Say

(This post can also be applied to nonverbal adults. In this article I refer to my son, Jeremiah. He’s six-years-old, has autism, and can’t speak, however he can make limited sounds.)

We talk for them, we assume what they want. We don’t listen to the their nonverbal cues, we move on without concern for the nonverbal child’s desires or needs. But every person desires something in life, they have immediate needs and future plans, and for the person who can’t talk, those aspirations are largely ignored.

So, how do we know what our nonverbal child wants? We watch and we listen very carefully. Many of us parents of autistic kids spend our lives studying and listening. We study autism, we pour over articles and books. Some study treatments and therapies, and look for the most knowledgeable professionals. We listen to parents of autistic kids, and some of us listen to autistic adults. Hopefully when it comes to our children we’re doing the same, hopefully we’re listening to them.

We must carefully watch our kiddos who can’t communicate well, listening for what they’re doing in the back of the house, which cupboard are they getting into (or maybe yours all have locks ;)). What do they play with most? If they’re staring intently at something, what is it and why are they doing it? Once when I was at Jeremiah’s school, he was dancing in circles and staring at the floor. One of his paras chuckled and asked him what he was doing, as if he were being funny. I noticed there was a purpose to what Jeremiah was doing, he was staring at his reflection on the tile floor.  I’m learning to always watch, always ponder, and most of the time I ask him what he’s doing, just as the aid did.

If our child doesn’t talk, how do we know what they’re interested in? If we’re lucky and our child is interested in balls, it’s the ball they pick up the most. What do they do with it? Do they throw it, kick it, roll it? What’s your child’s favorite color? Look at what they’re most interested in, what color is it? Is it a red car? A black motorcycle? A doll wearing pink? For many of you, your child has interests in odd things, maybe a yard sprinkler or kitchen spatula, is it shiny or dull in color?

When some autism parents are asked what their child’s favorite movie is, they respond, “I don’t know, he likes several movies.” But what are his reactions to the movies he watches? Jeremiah claps like crazy when he watches Madagascar, it seems to be his favorite, but he may choose other movies to watch. He likes them, but they aren’t his favorite.

When our children do voice (or maybe with a noise made with their body, like clapping) it’s important for us to recognize it. If Jeremiah is clapping while the Lemurs on Madagascar are cheering, I talk to him about it. “Do you love this part?” “Are you cheering with them?” I also give him words, “Are you clapping because you’re happy?”
how to help your nonverbal child feel heardWe also pay close attention to connection made in every day life. Every time we used to drive past a certain point on the highway, Jeremiah would start bawling. It didn’t take too long for my perceptible husband, Justin, to realize it was because we drove by Burger King without getting a drink or french fries. Whoops.

Jeremiah loves his schedule, just like your kiddo right?😉 When we turn to go down the street that passes his school at a time when he’s not supposed to be in school, he wails, a siren wail. His way of saying, “What are you doing? I’m NOT going to school, this is not a school day. I know because I know what time it is and I didn’t got to school today peeps.” He loves school, he does awesome there and walks right in when it’s TIME to go to school, but when it’s not, he would much rather be at home or with his family. Just another connection.

Jeremiah has ways of saying, “Heck no!” If he’s in his room and we ask him if he wants to go outside with us and he doesn’t, he’ll slam his door. When you don’t have words, how else are you going to say “no”? Slam that door! He also has verbal sounds that mean yes and no, however they aren’t quite as clear or consistent, but they do exist. If your child can make any noises, they probably do too. They also have facial expressions to express what they want or don’t want. But you have to really study your child to understand those facial and verbal cues that aren’t so obvious.

Jeremiah sometimes has an “uh huh” sound for “thank you” when I give him something he wants. I say “thank you” for him and tell him “You’re welcome.” His “thank you” sound is very similar to his “yes” sound, but we can usually tell what he’s trying to communicate given the surrounding circumstances.

It’s important to treat your child as a person who has opinions. 

Ask your child questions. “Do you like the truck?” If they’re looking at a picture of someone swimming, ask them, “Do you like to swim?” If your confident your child enjoys swimming, you can say, “You love to swim!” Jeremiah responds well when we say this, and if we’re making plans to swim that week, we can tell him. This is a great way to move beyond PECS (Picture Exchange Communication System) to have conversations with your child about the past and the future.

Recently we went on a special needs ski trip with our son’s school. As my husband walked by one of the kids (a nonverbal child), he began conversing with her parents. The dad made a comment about the ski instructor (who works with special needs kids) talking to his daughter as if she’d respond, but he said she wouldn’t respond because she couldn’t.

I think the ski instructor had it right though. He may not have known she couldn’t talk, but he probably figured out fairly quickly through her behavior that she couldn’t speak. The ski instructor may have been talking to this girl the way he was because he wanted her to feel normal, he wanted her to know she has opinions, wants, and needs and he was interested. No matter that she couldn’t tell him.

Nonverbal people want to be treated like everyone else.

In the book Neuro Tribes, Silberman talks about his time spent with Craig and Shannon, Leo’s parents. Leo has autism and his parents are amazing at learning what Leo’s cues are, what his sounds mean, and how they’re connected to his feelings. Here’s an excerpt from Neuro Tribes,

“Some days, Leo hardly says anything at all, though no one could accuse him of being unexpressive. He has his own versatile lexicon of nonverbal sounds, song fragments, and catchphrases that he uses to communicate with the people he knows and trusts. When Leo is happy, he bursts out in riffs of scat singing, making up little melodies as he goes. When he’s basically content but feeling restless, he makes a sound like tikka, tikka, tikka. If he’s more anxious than that, he makes a sound like Jimmy Durante: “Atch-cha-cha!” A sudden burst of happiness can inspire Leo to whirl his arms around and gallop in circles shouting, “Whoop! Whoop! Whoop!” When he’s tired, he makes a soft keening noise. And when Leo is hungry, he just sobs his heart out. After visiting an aquarium in Seattle with his family, he added the chirps of a beluga whale to his repertoire of echolalia (the term of art for the way that autistic people sample the speech they hear around them and repurpose it for their own use).”

Wow, when I read about Leo, I know I have a ton of investigating to do with Jeremiah. I have a gazillion more connections to make between his actions and sounds and how he’s feeling.

But isn’t the story about Leo amazing? Autistic kids, or any child who has special needs just want to be treated like everyone else. Isn’t that what we all want? We don’t want to be thought of as less-than, like we don’t have opinions or needs. Like we’re hungry only when everyone else is ready to eat, and if we’re cranky it must mean we’re just tired. Maybe we don’t feel good, maybe we’re having a bad day. We want someone to care. Ask your child how their day was at school, how they feel about the weather, if they played with any friends at school. Talk to them, they’ll appreciate it.

Don’t forget to check out this article I linked to in this post, it will give you a whole new wonderful way to communicate with your child: Give Your Autistic Child Ways to “Talk” About the Past
You may also be interested in the article: So Many Things I’d Say If Only I Were Able

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 also “like” my Facebook page and follow me on Twitter and Pinterest for more helpful information and links.

PERFECTION and peoples pervasive disrespect for the autistic person

Perfection & peoples pervasive disrespect for the autistic person
It’s amazing the places we find encouragement and the places we find criticism. Are you surprised by the comments you hear about your child who has a disABILITY, about others who have disABILITIES? It’s especially gut-wrenching when those comments come from a family member who should know better. Particularly one who’s been around your child often, has listened in on, or been part of, innumerable conversations about said child, autism, and disABILITIES. Yet, for some it goes straight through, over, and around their head.

A few weeks ago our family spent time with someone who exemplifies the above definition. We’d just concluded a discussion about autism and our beautiful, sweet son, Jeremiah. Then Bill* began talking about a young mother he knows, he shared how she had birthed all her children naturally, at home, with no medications. Bill called her kids “perfect” within earshot of my children numerous times. His statements were an assault on Jeremiah, who he didn’t see as “perfect,” and we know this because of other hurtful comments he’s made about our son. Finally, I had enough and I told him (well I was angry enough that I pointed at him),

“My kid is perfect too. Very perfect.”

Before I make my points, I need to explain the word “perfect.” No one is perfect, not one. However when it comes to children, the parents (and we wish family did as well) think their children are perfect. Of course we (or most of us) don’t believe this in the literal sense. We know our children do wrong at times, but heck if you’re family and you are going to label someone else’s kid as perfect, then mine should be held in the same esteem.

So…

  1. Jeremiah is perfect. He’s amazing, kind, sweet, funny, and overall a really cool kid. I’m so proud to be his mother. It wrecks me that someone else (especially family member) can’t see the multitude of positive attributes he has.
  2. Bill should have thought about WHO he was saying this in front of, but some people don’t have the ability to close their mouth and use their brain. I didn’t have the option of an at-home birth, medication free. No, my child is adopted. His biological mother was on numerous medications while she was pregnant AND received ELECTRIC SHOCK therapy when she was far along in her pregnancy. Besides, these are not the causes of autism.
  3. Neurologically speaking my son is FAR beyond the children Bill called perfect, we really don’t want to go there do we? It wouldn’t be kind.
    Kindness, it's free, spread it around
  4. Speaking of kindness, it’s free. Grab some. Spread it around. People need to think about what they say and when they say it. Bill, as well as many others need to take in the world around them and get some wide-vision glasses.
  5. Without autistic people we wouldn’t have the theory of quantum physics, light bulbs!, Apple products, savants, and oh, what would we do without Pokemon??
    Without autism or Aspergers, the world would have far less computer programmers, mathematicians, composers, certain presidents, logicians, cryptographer, architects, philosophers, inventors, investment fund managers, engineers, and economists.

Sorry for the rant. I know parents of autistic children hear comments they wish they didn’t. I wrote this not only for myself, but because I want you to know you aren’t alone.

*Names have been changed.

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the adopted and foster child’s ability to adapt

the adopted child's ability to adapt
Adaptation. It can take a long time for humans and animals to adapt to a new situation or new lifestyle. However, many adopted and foster children who come from traumatic backgrounds adapt very quickly to new surroundings. This is also true for some children who are adopted when they’re infants.

Even after healing took place with our daughter, we noticed when she was under different influences, she acted disparately. If Payton was with a teacher who allowed her to speak out when she wanted and didn’t have boundaries, we noticed her negative behaviors increase at home. If she spent more time than usual with grandparents who gave her beyond what she gets in her normal, every day life, or ones that don’t have the ability to say “No,” we noticed unfavorable behaviors arise at home.

It seemed that no matter what rules or life we led at home, if she spent enough time with people who didn’t have these same expectations, we were in a battle. A BIG battle.

I’ve talked about this before, there are behaviors and personality traits that will stick with our children even after healing takes place, you can read more about this in What’s Next? A Look at Life After Bonding Takes Place.

Even after an adopted or foster child has bonded, they will still have residual effects from being neglected and abused.

Neglect and abuse transforms a child’s brain, trauma rewires their brain to protect them. They may dissociate, they may fight. We can help them rewire their brain, through love, consistency, rocking and rhythmic movement, and all the other ways I’ve talked about here on Lovin’ Adoptin’, but there will still be something left of that life, that life that formed who they are.

Many of their behaviors and personality traits can be guided toward positive avenues, I encourage you to check out what these are and how to help your child channel these for good. However, some of these behaviors and traits can be difficult to deal with, even if they can serve the positively in the future.

One of the behaviors that’s hard to deal with is our children’s ability to adapt and how it changes how they act so quickly, because they’re adapting quickly. When our children are the center of attention, it’s a great thing, but when we come back to reality, and life happens, a parent is sick, a sibling needs attention, there are appointments and commitments, and life, it can be really difficult because our child is stuck in being the center of attention and they think it should continue. Why not?

If a child can manipulate situations, and persuade adults to do their bidding (because many of our kids are intelligent, and this is a good quality when used in the right way), we then see it happening at home.

This behavior doesn’t just stop because we tell them to or because we hand out a consequence. It takes a while for them to adapt back to the expectations we have at home, like, “I said no, and I mean no.” Ugh.

So begin by looking at where your child spends the most time. Is it school? Daycare? If you know you have expectations at home, and you don’t allow your child to talk back, be sassy, or be rude to others, yet they still are (although some of this will take place no matter what because they are kids and they’re strong-willed) take a look at what’s happening in these other venues. Spend time there, see what’s happening for yourself. (You will also be able to tell if there are lower expectations because of how your child acts when they come home from these places.) If you see that your child is allowed to act unacceptable, have a kind face-to-face talk with your child’s teacher or daycare provider. Lay out how you do things at home, and try to encourage them to implement similar expectations so everything is cohesive for your child.

We don’t want to squash our children, so remember that sometimes when in these other settings, behaviors may arise in our kids because they require extra attention.

This is not a problem, but it’s going to be a work in progress to find ways a teacher or daycare provider can give your child that attention they’re seeking – if they don’t receive it, they’ll look for it in unacceptable ways; negative attention is still attention.

There is no cut and dry solution here. Your child is depending on you and your spouse to continue having the same expectations at home, and you communicating with those your child spends time with. I feel strongly and have seen that when everyone works together with the same goals, our children do so much better.

I also believe that having an understanding of why our child behaves this way helps us handle it better.

Last year, my parents took our daughter, Payton, for a long weekend. It was the first time they’d done this, and it was the longest she’d been away from us. Like many grandparents, they spoiled her, a ton. It’s all good, I’m extremely thankful they did this, and we did it again this summer. However, following that first weekend she spent with them, I talked to my parents about Payton’s behavior afterwards, it was horrible. The whole universe spiraled around her and her only, she wanted it all her way, and couldn’t handle being told to do anything. Our home was a raging river for a couple weeks after.

Although I’d told them before they took her to have expectations for her, I’m not sure it happened. Okay, it didn’t really, but heck they’re grandparents, and it’s all about FUN! Thankfully though, they recognized what ensued after their time with her last summer and had more expectations this summer when she spent a week with them. It was better when she returned home this time, but there were still residual effects, she was the center of attention and she was able to do almost anything she wanted. She had a blast and I’m so glad, but now I have to be even stronger in sticking to what I say.

Do you see this happening with your child? I know this is so hard, our children have to go to school and we can’t always switch classrooms because a teacher doesn’t work out. We have to send our children to daycare if we work or need some down-time, and sometimes we need babysitters to step in. Sadly we can’t control every situation, unless we homeschool and never send our child out of the home, and for some of us that isn’t realistic. But what we can do is communicate what our child needs. We can stick to our expectations. You CAN do this!

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school and what it means for the autistic child

school and what it means for the autistic child
For many of you school has started, and I really hope your child is having a great year. It’s scary sending your child off to a new year, especially if they’re going to a new school, a new class, or have a new teacher or aid.

So many factors play into our children’s lives. Think of all the changes a new school year brings for the autistic child. Oh my, it makes me cringe, literally. Like I wanted to keep Jeremiah at home all day every day, no school, just stay at home and BE. That was my promise if the school year didn’t start off well, I’d give it a week or so and then I’d fire my jet-packs and be outta there! If the new Special Ed teacher wasn’t kind, the doors would swing shut behind us. If he couldn’t handle how much they have to sit and do book-work in Kindergarten we’d say sayonara, and wave the white flag. So many factors. Ugh.

Some parents of autistic children don’t quite understand what their child feels or how their child perceives their space. It’s common because not many autistic adults have their voice broadcast over the airwaves telling us about themselves. This is largely in part because we mostly hear the professionals voices sharing what they think they know about the autistic person. But who better to tell us what our child experiences than those who’ve been there and seen and felt it all?

That’s why I wanted to share this awesome post I came across on Facebook. M. Kelter is the moderator for the Invisible Strings Facebook page. Kelter wrote about her experience in school, and it hit me in the face. This is everyday, every moment, reality for our children:

While going back to school can include some positives for kids on the spectrum, I went into every new year with an overwhelming amount of anxiety. Most of that stress was due to social fears, but there was another factor that was just as problematic and that I didn’t understand until many years later. That is: the sensory onslaught that a new school year represents.

Today, I understand: being at home meant being somewhere so familiar that I had long since acclimated to its sensory peculiarities. The lighting, sounds, tactile variations…my mind was used to it all, and therefore didn’t have to work as hard to process the never-ending stream of incoming data.

Familiar = peaceful. Unfamiliar = the polar opposite; it is mental chaos.
autism - unfamiliar causing mental chaosAnd after spending a summer immersed in the peaceful sensory familiarity of home, school became that polar opposite.

A new school year would mean…not just a different setting, but one that included a huge number of different rooms and activities. The classroom had one set of sensory experiences (sounds from pencil sharpeners, different voices, chair legs scraping floors, etc.)…the hallway had another set…the playground had its own range of sensory experiences, as did the lunchroom, the bathrooms and so on.

It takes my mind quite awhile to acclimate to any new environment. And school was a dozen new environments, all rolled into one.

At the time, I didn’t understand why I found simply being at school to be so overwhelming. Today when I go places, I immediately feel run down and I understand: my mind is just having to sort through a huge number of unfamiliar data points. The lights are different and this can be painful until I acclimate (which can take many months). The sounds are different, which can feel strange, disorienting…again, I need time to get used to that.

If it’s unfamiliar and it filters through one of the five senses, it can take quite a bit of time to acclimate to that newness.

For me, school was just layers and layers of confusing input that shifted throughout the day and intensified as we were shuttled from activity or room to another. It felt like being inside of a giant sensory kaleidoscope that spun too fast…that I had no control over…that never stopped turning.

I mention it now, because at the time, I never had words for any of this. I just stressed and felt overloaded and I couldn’t understand what was happening.

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I’ve read a lot about autism, I’ve read and listened to autistic adult’s perspectives on autism, I’ve lived with autism, and I’ve written about autism, but there is still so much I’m learning. This is what our kids face, this is why there are meltdowns, chewing on their shirts or anything their teeth can reach, stimming, head banging, grinding of teeth. Oh, noise bothers me, lighting can irritate me, new environments stress me out, but this, this magnitude, I don’t know what I’d do.

I hope this helps you understand and empathize with your child. I hope it encourages you to work with your teachers, special educators, principles, and aids to guide your child through this sensory onslaught.

I am a supporter of inclusive environments for children with special needs, meaning they are part of the general classroom as much as possible. However, we need to be sensitive to their psyche, supporting them and offering alternatives when necessary.

Additional posts that may be helpful in understanding sensory issues and help your child in school:

Sensory Processing Disorder #1 (What it Is)
Sensory Processing Disorder #2 (Does Your Child Have Sensory Issues?)
Sensory Processing Disorder and the Classroom
Transitioning the Special Needs Student to Another Class or School
What to Communicate with Your Child’s Teacher: Autism in the Classroom
Inclusion Vs. Exclusion: Special Needs in the Classroom

 

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 also “like” my Facebook page and follow me on Twitter and Pinterest for more helpful information and links.

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

I thought the recap below would be beneficial, and for many this is new. I hope you find this helpful. You can also check out Rainbow Kids for my article on Transitioning the Special Needs Student to Another Class or School. Even if you’ve already begun a new school year, there’s some information within the article which will still be advantageous. Have a GREAT school year!

lovin' adoptin'

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?

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the many benefits of swimming for autistic children

the many benefits of swimming for autistic children
Teaching autistic children to swim has numerous benefits, first being that drowning in the NUMBER ONE KILLER of kids who have autism. I’ve written these two posts on swimming and the autistic child:

The first I highly recommend reading, 4 Reasons Why You Should Teach Your Autistic Child to Swim.

Also check out, How to Teach Autistic Children to Swim

I recently came across an excellent article by Vee Cecil on Sacramento Autism Spectrum and Special Needs Alliance’s website listing additional benefits of swimming for children on the autism spectrum. I like Vee’s points because they go beyond safety reasons, and reach into the real heart of the matter, the person, what the autistic person wants and desires, how to meet them where they are.

I can attest to the benefits Vee’s lists because I consistently witness how much Jeremiah loves swimming. During our most recent swimming adventure, he splashed around in water up to his neck.

For him it was freedom, exhilaration, and a sensory-filled universe.

The more Jeremiah learns what his parameters are in the water, the more he’ll realize what is safe and what isn’t (with complete adult supervision, meaning someone VERY close by). We will continue to work on those swimming skills I mentioned in the post listed above. He’s gaining skills, maybe not as quickly as we’d like, but we’re moving forward, and progress with any autistic child is it’s own unique adventure.

Does your child love to swim? Share your experiences in the comments below, I’d love to hear from you!

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 also “like” my Facebook page and follow me on Twitter and Pinterest.