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.)

IMG_3260

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

(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.

how to help your nonverbal child feel heard

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?”
We 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


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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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!

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?

View original post 672 more words

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!

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this IS what I signed up for (autism, adoption, and all of the above)

this IS what I signed up forLast week I shared what fun has been going on here. After sharing this with a friend, she said, “It’s not what you signed up for is it?” (A little background if you haven’t been around for long: Justin and I adopted two children from foster care, Payton is seven, and Jeremiah has non-verbal autism and is five. You can read more about Our Story.)

My friends words broke my heart, and shocked me. The strange thing is I share both the positive and negative with her, and before the last few weeks, Jeremiah and Payton had been doing really well, and most of my complaints center around how much pain I’m in, or how our family isn’t getting support.

What she said was also a reflection of how she feels about her life. Life has disappointed her, and she feels it’s not what she signed up for, but it’s not how I feel. I think she feels that if she isn’t happy with her life, which doesn’t have near the complications mine does (and that’s okay), I couldn’t possibly be happy or satisfied with mine.

However, I do love my life. Yeah there are hard times, but that’s a given with what our family is made of.

So, this IS what I signed up for. I signed up to be a parent. 

I didn’t sign up for the expected, I signed up for the unexpected. Especially when I adopted two children from foster care. But frankly, most of the time life doesn’t go exactly as expected, and if it does, it’s probably fairly boring. Ha, when I hear people complain that their life is boring, I want to yell, “Come visit me! I’ll help you out with your boredom!”
No, not every day is sunshine and snowflakes
I signed up for love, and I got it a million-fold.
Jeremiah was crying last night when Justin put him to bed. He would cry a little and stop, cry a little more. This is odd, he usually stays in his room and plays until he falls asleep, so Justin offered him some crackers and water (that’s normally the only reason Jeremiah cries at bedtime – he needs something else), but he wanted neither. He wanted to watch a movie. Odd.

I asked Jeremiah what he wanted, he went to the movie again and picked it up, I sat it down and told him, “No movie, it’s bedtime.” He cried again. I laid down with him on his bed and held him, but he kept circling in and out of crying. I asked, “Did you have a bad dream last night?” It was the only reason I could think of for him to not want to go to bed. He stopped crying and looked me in the eyes. This is sometimes his way of saying, “Yes.” I responded, “I’m so sorry you had a bad dream or nightmare. I’m here and Daddy’s here, you’re safe.” He wiped his darling eyes and began to drift off into sleep.

I’m so glad I was there for him, even though it might not be what I planned on doing for those twenty-five minutes (I had laundry, and watering to do). Love, I do it because of love, and I loved those moments we had together, when he knew I would keep him safe, I would push away those horrible, scary feelings, the connection when I understood what could not be spoken. 

I signed up for a child who could have a mega-ton more problems than he does. Frankly, we’re lucky he only has autism, it’s nothing compared to what it could’ve been.

I signed up for learning a whole new rulebook on life. 

I signed up for the unexpected challenges that have changed me forever, and hopefully have made me a better person. 

I signed up for really seeing humanity, viewing those people who are different in a whole new way.

So, yeah this IS what I signed up for.

No, not every day is full of sunshine and snowflakes, but without bad days, we wouldn’t appreciate the good. Without hard ones, we wouldn’t appreciate the easy ones (or the laughs). Without struggle, we wouldn’t know the gift of love when it arrives. I wouldn’t know what I do about humanity if it weren’t for what I chose. I chose two kids, I chose what I couldn’t see, but now my eyes have been opened. I choose autism.

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.

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.


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 odor more helpful information and links.

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?

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.