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

Published on August 11, 2015August 11, 2015 by Tracy Dee Whitt2 Comments

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!

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

Published on June 16, 2015 by Tracy Dee Whitt11 Comments

Last 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!”

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.

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on hold: when skills in Autism fluctuate

Published on November 4, 2014 by Tracy Dee Whitt2 Comments

An audio version of this post is available at the end. Scroll down if you’d like to listen.

Parent/Teacher Conferences. Fun right? Actually, I’m kinda weird and I “like” talking to my son’s teacher. She’s great with Jeremiah, cares deeply about him, understands what it’s like to have a child with Autism, and the best part, she has a son with Autism. She gets it, but she also loves what she does, she really understands Jeremiah and works so well with him. I’m sorry she’s not your child’s teacher. Really I would share if I could.

So, now that you understand how amazing she is (if you follow Lovin’ Adoptin’ you only hear about her, oh, every other week at least), I’ll share a bit of what she said in our conference. She said there were some things Jeremiah’s doing that are really exciting, and some things that are really frustrating.

Some of the good things she’s seeing is, he’s looking at himself, specifically his mouth in the mirror a lot, and if teachers or therapists join him, he really engages with them. Jeremiah said the word, “cracker,” when one of his therapists pointed to her own mouth and enunciated it. He’s playing with play dough, although he is licking it, which is better than eating it, which I could not get him to stop doing this summer. (And no worries, we’re keeping our germs to ourselves, he has his own bag now.)

The things she’s frustrated about are, he won’t do what he used to do. No puzzles, they at least used to be able to do this hand-over-hand. No shape sorter, no interest in shapes at all. This kid used to be THE fastest shape sorter in the history of man kind, that’s right, Guinness Book of World Records right here. No more, but that hasn’t been there for well over a year. Nor will he do work boxes, they used to be able to encourage him to do those too. Nope.

As to why Jeremiah isn’t participating in these activities, Justin’s mind started going to the seizures he’s had recently. He felt the seizures had to do with his lack of interest, which could be a possibility, but I haven’t seen the regression I have before. He’s completely lost skills at times in his life, but this seems different. So my mind went in another direction.

I had a thought, or quite a few to be exact. When we worked with the Developmental Interventionist, she pointed out to us that during the times when I freaked out and thought Jeremiah was losing a skill, he was actually putting it on hold (sometimes) while working on the new skill or focus. For example, if he was needing a ton of sensory input, he would be jumping, swinging, needing push-pulls done on the floor, etc., he would stop using the PECS pictures. He’s done this throughout his development.

It seems that a lot of what Jeremiah is doing right now is social.

I remembered and told his teacher about an instance a couple weeks ago, where he was sitting down in a circle with some other kids. He stayed there, which was awesome in itself, and he was holding some blocks and the other kids were building and playing with their own. It was so awesome because he really doesn’t parallel play.

Then they talked about how when Justin takes him to school, he’s actually skipping through the play yard into class! Yeah, totally cool, especially for a kid who cried and screamed when he had to go to school last year. Now he’s excited and so are we! He goes into class and stands at one end of the room where he has a visual of all the other kids and parents coming and going.

He watches.

Add that with how he watched the therapist in class make the “cracker” sound, and the awareness he has of his mouth, how engaging he is when his teachers join him in front of the mirror, and the situations I listed above, and I think he’s focusing on the social aspect of life right now. That’s awesome because he’s never been this intent on other people before, and never on other kids. He has his “girlfriend” who he’ll sit by, but usually not other kids unless they’re in the rocking boat, and since that’s paired with his favorite, sensory, he’ll deal with it for a couple minutes. But it seems that a whole new awareness is taking place and it’s thrilling.

So, just to encourage you parents, if you see your child isn’t doing something, or skills come and go, remember that sometimes those “skills” might just be placed on hold while something else is developing. We really don’t know how the Autistic brain works, but it works differently and they may need that time to put a skill aside while they work on another. For me, it’s really taken some of the frustration away when I can see it like this.

Has your child ever lost skills? Have you noticed that your child puts some on hold while working on others?

If you feel this helped you understand a little more about Autism, or it made you feel as though you’re not so alone, feel free to share it with others.

If you would just love to read more of what I write, you can receive each post made to Lovin’ Adoptin’ by subscribing in the upper right corner. You can also follow me on Facebook, Twitter, and Pinterest for more helpful information and links.
Too busy to read through posts? I’m offering something new. You can now listen to an audio version of this post. Plug in those ear buds, listen while driving, mowing, cooking, or watching football.

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

Published on October 7, 2014 by Tracy Dee Whitt2 Comments

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.
There 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.”

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.

where the abuse of Autistic people begins

Published on September 9, 2014September 16, 2014 by Tracy Dee Whitt5 Comments

You may have seen it in the news, a teen was talked into the ALS Ice Bucket Challenge, but, instead of ice, peers doused him with urine, feces, cigarette butts, and spit. This enrages me. Part of me can’t believe people would behave this way, but then I have not lived the secluded, naive life, and I know what humans are capable of. Still, it’s maddening and inexcusable.

You can see the video here. ABC News Channel 5 says about the video, “The above video is graphic and disturbing. The boy’s parents say he is ashamed and scared by what happened but are sharing to raise awareness about the cruelty of bullying and the need for tolerance and kindness.”

There may be arguments as to whether it’s appropriate to share the video so publicly, especially since the teen is ashamed of what took place. I’m giving you a link to the video if you have older children and want to share with them how others will treat people with disabilities. Children and teens need to know how to stand up for those with special needs, they need to understand what’s not okay.

If the offending teen’s parents were talking about special needs in their homes, this wouldn’t have happened. If they’d had conversations about people who are different than them, this terrorizing wouldn’t have taken place.

If they went to a school that included special needs children in the regular classroom, there’s a good chance this teen wouldn’t have been abused. If that inclusive school educated students regularly on special needs, these offenders wouldn’t have committed a hate crime.

Special needs and Autism need to be talked about in every home, not just certain homes, in certain families, in certain areas of the country. Not just when there’s someone with special needs next door, or a clerk at your local grocery store. Education needs to be everywhere because you never know when your children are going to meet up with someone who has special needs.

Don’t keep your children away from people with special needs because you’re afraid of what your child will say, there are excellent teaching moments everywhere. If someone is in a wheelchair, you might be afraid that your child will ask, “What are you in that rolling thing for?” You can then kindly explain to your child that it’s called a wheelchair, and the person in said mobile unit may share information. If not, when you walk out of hearing distance you can share why they might not be able to walk.

Deborah at www.care.com wrote a fantastic article called, Teaching Your Child about Peers with Special Needs, it’s an excellent resource I highly recommend.

I feel the teens who abused the Autistic boy didn’t understand he has feelings, likes, dislikes, and opinions just like they do. Those teens didn’t see who this teen is and appreciate him for who he is, they only saw his differences. They viciously attacked his differences and made a mockery of him. Understanding, empathy, compassion, and acceptance can happen through continuous discussions about special needs and the differences in others.

what if my special needs child lives with me forever?

Published on August 5, 2014 by Tracy Dee Whitt4 Comments

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!

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 helpful links and information.

I have Autism and the world treats me different

Published on July 29, 2014July 29, 2014 by Tracy Dee Whitt3 Comments

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.”
Unfortunately, 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”?

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.