A family's story

Posts tagged ‘Autism Awareness’

The Gaps..and the Hard Place

I know I also haven’t written as much lately because, well, my boys are getting older, and I just don’t know how much I should share. I hear this sentiment echoed often through the blogosphere…I do hope that my boys know how much I love them and how much my writing is a catharsis for me.

I decided to write today because I am struggling to process through the events of this morning, and I just need to work out MY feelings.

Our school always does a breakfast for veterans. It is well done, and teaches the students about sacrifices that our veterans have made for our country. The third graders are responsible for putting together the event. Well, the teachers and a few of the third grade parents plan it. The kids make crafts and invite veterans and sit with the veterans during breakfast. The rest of us moms and dads volunteer and serve the veterans and kids, and help them in their endeavors.

We had prepped Tate for today. I did a little social story. His teacher sent home the songs that would be sung. I showed him pictures from the Veterans’ Breakfast that Jake’s class put on a couple years ago. He knew that I would be there helping out, and that my dad, Grandpa, would be there, too.

Tate started out just fine. He sat with his Grandpa and with some other students from the class that he pushes into. Then he started to look for me. I was out directing guests to the right location. One of the aides came to get me so that Tate could say hi to me. We walked in, and Tate ran up and gave me the biggest hug and hugest smile. We talked about how I was going to help, and how he had to go sit with Grandpa. He went back and sat with my dad.

At first, everything was just fine. The veterans mingled with the children. We parents walked around, offering refills of juice, coffee, water, and fruit and pastries. Tate happily sat by my dad and talked to him. He started to stim with a spoon. He came up to find me. I assured him that all was well, even though I could hear the voices getting louder, and the commotion started to increase.

Tate sat beautifully through a VFW representative’s speech. He kept stimming, but he was seated. Then, people started to move around. Parent volunteers started to roam the aisles to get pictures of their kids with their invited veterans, or pictures of them with their child. Tate is in a no picture phase, so I knew that when I asked he would politely turn me down. “No thanks, Mommy.” I snuck in a few but they weren’t the greatest quality.

The noise in the gym started to increase. The screech of the chairs. The talking over one another. Peals of laughter. Shrieks of delight. Little by little the noise increased as the time dragged on. It started getting warmer in the gym, too. Some adults took off their sweaters or their vests. Some removed jackets. The third graders were starting to roam around and find their friends.

During this time Tate got up and posed for a picture with some of his classmates. He really struggled to do it, because, like I said, he is in a no picture phase. But his beloved girl classmates were asking him to join them, so he did. Then they were starting to get silly and do girly things. It was clear that Tate was no longer a part of their interaction. I asked Tate to sit down. He did, begrudgingly. He wanted to be with his girls.

One of the girls told him he couldn’t sit by them, because he isn’t in that classroom. He got flustered. He really struggles when it comes to handling his emotions of disappointment or embarrassment. He was so disappointed. He threw a spoon in her general direction. When I asked him to calm down, he said, “sorry, mommy”. I tried to explain that the girls were with their class, and wanted to be together..and that he could come talk to the boys. He didn’t want any of that.

Then, well, one of his beloved girls came back to him and asked why he was yelling at his mom. He lost it. He pawed at her. I pulled him aside and asked him to calm down. He laid on the floor. One of his aides came by and we got him into the hall, the hallway where it should have been quiet, but unfortunately, the 2nd grade was getting their coats to go outside for gym class. He wasn’t getting his quiet escape, so he asked to go back in the gym.

As we entered the gym, the girls came by him again. This time, he hit at his beloved girl a little harder. I was gobsmacked. I reacted, maybe not as I should have, but I told him he needed to calm down and keep his hands to himself. I directed him to his seat. I forced him to sit down. He started to call me stupid. Then he threw another utensil in his beloved girl’s direction. One of the regular ed teachers tried to step in and reprimanded him. That did no good. He started to fake wail. He was losing his shtuff.

His teacher came to the rescue. As he was whining out of frustration, she walked up calmly and asked if he’d like to go do a break in the classroom. He said no. He stood up and called his beloved girl stupid again. Tate’s teacher knew he didn’t mean it…she knew that he was just frustrated…and embarrassed…and overloaded. So she told him that he had a choice. He could do a break in her classroom or go get a drink of water so he could calm down. He chose the classroom, and they were off.

As they exited the gym, the third graders lined up to sing their songs for the veterans. Tate SHOULD have been there. THe singing is his favorite part. He LOVES music. He’d been practicing all month. But it wasn’t meant to be. He was content to be in the quiet classroom where he could bounce on the trampoline for a few and not have all the overwhelming noise and commotion.

As Tate found his calm in the classroom, my heart broke. It’s not fair. Something as “simple” as an hour-long breakfast with other third graders and veterans was just too much. I wanted to cry. I wanted to scream. Instead, I watched other children sing and sway and pledge their allegiance to the flag. My dad watched other people’s grandkids belt out “The Star Spangled Banner” and “America the Beautiful”.

In those moments, I wondered, are the gaps getting too big? Is Tate being properly served by being in a general school setting at various times during the day? The other children his age are maturing at a faster rate. They are able to do so much more independently. They are able to perform songs as complicated as “The Star Spangled Banner” and can last an hour in a large group of people. Tate tried. He gave it his all. But in the end, it was too much. And is this gap fair to him?

And I find myself back in the hard place…wondering if we are doing the right thing. Wondering if we are keeping him in a general school setting because it’s more comfortable for us…is it what’s best for him?

And that internal struggle as a parent begins over again…

Well Aware

I didn’t post yesterday. Quite honestly, I am not sure what I can say about autism and awareness and acceptance that hasn’t already been said. I mean, with the rate at which children are being diagnosed with autism spectrum disorders, many of us know of and are well aware of autism. It is everywhere.

Our school has a big bulletin board up at the front of the school. In big bold letters it proclaims, “April is Autism Awareness Month”. The school social worker, who has the biggest heart and a very personal connection to autism, put it up. I like that there’s something up there. I noticed several kiddos in the school were wearing blue yesterday. A few had various “Team _________” shirts on to support loved ones or family friends. So, I do think that the school community is aware.

Now that everyone is aware of autism, I think we need to work on letting those with autism advocate for themselves. I am obviously still advocating for Tate, and will always do what is needed to get him what he needs to succeed. However, I am trying not to speak for him and do everything for him. I’m letting him take the lead a bit more.

At home, lately, when Jake or Cole ask me why Tate is doing something that is seemingly odd, or maybe even annoying to his brothers, I have stopped answering for him. Instead, I ask them to ask Tate. Tate knows why he does things better than I do. For instance, yesterday he was whining in the van. We call it “perma-whine”. It usually happens when he’s worn out and/or hungry. Cole kept asking me why Tate was “crying like that”. I told him to ask Tate. So, Cole did. Tate said, “Cole, I hungry. Soooo very hungry.” And we were on our way to Culvers for a take-out treat, so it made perfect sense. He’d been at school all day, did 3 hours of therapy, and then we visited the library. He was plain old starving by the time we got our food!!

Jake had a musical concert a few weeks ago. We sat in the back row, ready to make an escape, if needed. Tate got a little antsy. Then a little whiny, and then a little oppositional. I know he was trying to find his calm, but it just wasn’t working. Hubz took him out into the hallway at one point, even though Tate said he didn’t want to go. After about 2 minutes, they were back, and Tate was able to watch the musical for a bit. Suddenly, he looked at me and said, “I, I, I need to get out of here. I need to go….I need to go pee.” We quietly left the gym and walked to the bathroom. He used it and came out. He was visibly calmer and more regulated. He just needed to move. So we hung out in the hallway with the toddlers who also needed some sensory breaks. We walked past his classroom. He showed me his locker. We made it back to the gym for the finale of the show. No tears. No shouting. No meltdowns.

This morning we were sitting around waking up and eating breakfast. It was raining outside, and it got a little windy. There was a flash of lightening. Then, obviously, thunder clapped. Tate ran into the kitchen where I was reading the paper. “I’m gonna, gonna….gonna be sick.” It’s a script of his. Often, it means that he’s anxious. He gets, I assume, that fluttery feeling in his tummy. I looked at him, and as we shared a gaze, I told him that he wasn’t going to be sick. I thought he might be anxious…worried…about the thunder. “Yes!” I assured him that he was safe inside. He asked if it was going to rain during the day. Our forecast is for rain on and off throughout the day. I told him as much. “But no thunder, right, Mom?” I explained that there could be thunder, but most likely it was just going to be rain…with maybe a little thunder here and there. I reiterated that he’d be safe in the house, on the bus, and in school. “Okay, Mom. But I sleep with you if there’s thunder tonight.” (Oh, boy…)

So, I guess that this month, since we are both aware and accepting of Tate and his neurology, we’re going to approach this as Autism Advocacy Month. Tate’s language skills have blossomed tremendously lately. Why not let him practice the skills he has worked so hard to gain? Yeah…Autism Advocacy month.  I like the ring of that.

Spreading a little awareness

I have been helping my neighbor by watching her two kids in the mornings before school. Their childcare situation fell apart, and I don’t mind watching the kids for a half hour before school. It will be nice once the weather gets a bit warmer and we can spend more of the time outside than inside…but we have been doing well since January.

Today, the kiddos had gotten out the door, and I was putting my coat and gloves on so that I could join them. My neighbor’s son was having a hard time getting ready. He seemed very disorganized. I helped him get his stuff together. As he paced back and forth in the hallway while I fixed his coat sleeves, which he always seems to flip inside out and upside down, he stopped in front of our “mud room” door and looked at the artwork. He asked about a piece that Cole had done at preschool. It was a bear, and on the bear, Cole’s teacher had printed out his name. Cole then had to write it himself on the following three lines. Cole, for all of his fine motor prowess, just does not have any use for writing. It’s been a battle for the past two years. Thankfully, we are starting to see an end to the battle, as Cole is starting to write his name much better. It is very clear on the paper whose name it is.

“Whose is that?”, he asked me.

“It’s Cole’s. See, his name is printed on there and then he had to write it three times.”

“Oh, was it like a test?”, he wondered aloud.

“No. It was a worksheet. In preschool, most kids are still working on learning to write their names.”

“That’s easy…writing your name. I can do that no problem”, he stated proudly.

“Of course you can! You’re a first grader.”

“Yeah. But there might be first graders who can’t write their names. Like, we had a kid in my class who didn’t know how to do it.”

“Really?”, I asked. “I hope that he or she can do it now.” I handed him his coat, and waited as he zipped it up. (I’m mean and make sure everyone is fully bundled!!)

“Oh, yeah. But, like, I bet autistic first graders can’t write their names. Like Tate, right?”

“Um, no. Maybe some autistic children cannot write their names, but Tate learned how to write his name in preschool. He still has to practice, but he can do it.”

“Oh. I thought maybe he couldn’t. So, how did Tate get autistic?”

“He was born that way. It’s the way his brain works. Kind of like how he has brown hair. It’s just the way it is.”

He looked at me, quizzically, “You know, my dad…my dad said that sometimes when you get older and you have autism, you can get cured of it.”

“Well, no…You can’t cure autism. It’s the way a brain works. Tate will always be autistic. However, as an autistic person gets older, they often have ways to cope with the things that they find hard, and they are often able to do many things that everyone else does. Or they learn what works for them, and they stick with that. They try to find what makes them happy.”

“Oh. I see.”

“Cool. Do you have any more questions?”

“No. I’m ready to go out.”

And with that, we were on with our day. Sometimes I still struggle with these types of questions from children. How much do I say? What do I say? Hopefully by having these little conversations, and having interaction with Tate, our neighbor’s kids will see that he’s different, but not less. He follows his own path, but it’s not “the wrong” path…just his path. And I hope that with the awareness comes the acceptance that as long as people are happy, who cares how they get there.

Struck a Chord…

I have read several blog entries over the past few days, and a high percentage of them address the latest gaffe by Autism Speaks. This time, it’s the fact that the co-founder wrote a very dramatic, fear-mongering Op-Ed piece in which she likens Autism to a malicious kidnapper that snatches up autistics and steals them away. She talks about all of the negatives associated with Autism. So much negativity. 

As a parent of an autistic child, it upset me greatly to hear that she, the co-founder of an organization that is supposed to be drumming up autism awareness, thinks that making people aware means you have to scare the ever-living daylights out of them. I highly disagree. We can promote awareness without freaking people out!

As the neighbor of a family who is starting to go through the process of evaluation, I am frustrated. I have spent the better part of this year trying to explain that an evaluation is beneficial. That a “label” isn’t a bad thing..and that it is better to know what you’re dealing with than to deny it into oblivion. I have discussed the benefits of therapy and intervention. I have talked about how living with my autistic son has helped me be more empathetic, more patient, and helps me put life into perspective. 

Now, I don’t deny that there are aspects of parenting an autistic child that are not all puppy dogs and rainbows. There are plenty of things that keep me up at night, or worry me. My son is one of those autistics who doesn’t sleep much. We are all sleep deprived. There are obstacles I watch my son grapple with every day, and a little part of my heart hurts (but that is on me, not him). We have had to cut vacations and change plans because we can’t afford it either money or time-wise. We are isolated at times, too. We don’t attend certain school events, nor do we entertain often. There are days when we deal with multiple meltdowns and opposition. It takes a lot of preparation and energy to coordinate things like haircuts and trips to restaurants or the mall. But we do it. In our own way. And in our own way, we are experiencing a rich, happy life. 

We aren’t, as Mrs. Wright suggests, “simply existing.” Hell to the mutherfrackin’ no. We are doing so much more than that. We are living–fully. We are laughing. We are loving. We are learning. And when we know better, we do better. So, “Listen Up”, Autism Speaks. As Marie Curie said, “Nothing in life is to be feared. It is only to be understood.” I think we all could benefit from understanding autistics and autism spectrum disorder better. I see my son, and how richly he experiences life, and I think I’d like to understand how he does it. I’d like to know how his mind works, and why certain things are calming and certain things are so anxiety-producing. 

Stop trying to instill fear, and instead, funnel your energies and time and money to UNDERSTANDING. Listen to autistics. Work with them to understand. That’s going to get us a heckuva lot further than rhetoric and fear-mongering.

*steps off of soapbox*

 

 

 

Speaking Up

This past weekend we joined our neighbors for a few beverages around the fire pit. It was a comfortable temperature for September, a little humid, but not unbearably so. As we sat and chatted, I tried to fight the fatigue that had set in from a busy week. I kept to myself during most of the conversation. It was nice to be outside, sans children, and just enjoy the peace and quiet.

At one point, two of my neighbors began chatting about the kids, as we parents tend to do. Ms. Neighbor #1 was talking about the kids and how much fun it was to watch all 8 of our kids interact on Friday morning before school. She remarked to Mr. Neighbor #2 (the one with the son who reminds me a lot of Tate back “in the day”), that his son is really moving and shaking now. He shook his head and sighed, “yeah”. Mr. Neighbor #2 mentioned that their little boy is finally starting to talk a little bit. A little. He expressed frustration at the fact that his son wasn’t very talkative yet at all..and that he’s over age 2 now. (Hubz and I shared a few leg bumps…we totally get it.)

Ms. Neighbor #1  recalled that Mr. Neighbor #2’s daughter was also speech delayed, and how now, the daughter is a chatterbox. (However, if you talk to Ms. Neighbor #2, she’ll tell you that the language with adults is mostly functional, while the language with peers is mostly scripts.) I mentioned that the son is in Early Intervention. Ms. Neighbor #1 didn’t know that. Mr. Neighbor #2 acknowledged that his son is in EI and that he’s just so frustrated.

Mr. Neighbor #2 went on a bit of a rant at this point. (As a parent of a developmentally delayed child, I completely understand it. I remember BEING there.) He went on about how in about 6 weeks there will be a meeting, which Hubz and I figured out must be an evaluation. He went on to say that he doesn’t want his son to have a label. How this label would follow his son for the rest of his life, and he doesn’t want his son seen as this label. He couldn’t understand how this label would do any good, and how can they tell at age 2, that his son was always going to be seen with this label.

I felt my heart rate increase. My palms got sweaty. My head started to pound. I wanted to pounce, to attack, for lack of a better word, because the disdain in his voice as he talked about this label, made me ache for Tate. For Jake. They both have labels…although, I knew which label Mr. Neighbor #2 was talking about. The fear and the perception of the ugliness of this label that he was expressing, both verbally and non, brought out the mama bear in me.

I took a moment. Hubz started with a “Hey, now…it’s not…”

I cleared my throat. I could NOT be silent. I interjected…

Speaking as the mother of two children with “labels” (I did those obnoxious air quotes.) and IEPs, let me say this…while it may be hard, we have found that getting an official diagnosis has helped more than it has hindered our boys. Tate, especially, has benefited from having that autism diagnosis. His services increased. His team can better help him at school. We are getting the right therapy for him to help him grow. He’s come a long way. SUCH a long way. We are better able to understand the “why” behind some of the behavior. 

I wish we would have gotten a diagnosis sooner. They can tell if he’s autistic (yes, I said it. I gave that label the name that Mr. Neighbor #2 wouldn’t or couldn’t) at age 2, and while he may lose that label, or it may change slightly as he ages and gets re-evaluated, some kids do; I don’t think there’s anything wrong with getting a diagnosis.

Hubz had my back and supported what I had to say. Love that guy.

Mr. Neighbor #2 wasn’t sold. I didn’t expect him to be. He talked about how when we were kids this wasn’t as prevalent, and how he sees some of the same stuff in himself that he sees in his son. And does that mean he should be..or not. Or why is it so common now?

I know that he needs to wrestle with this on his own (and with his wife, who wasn’t feeling well and wasn’t hanging out with us that night). And maybe their son is just delayed and isn’t on the Autism Spectrum. But if his son is, I want him to know that he’s not alone as a parent. Acceptance is a journey. It really is. We’re 7 years into this journey. We’re still learning as we go…but hey, we’re a heckuva lot more comfortable with where we are now than we were 2 years ago. And someday, he will hopefully be comfortable with this label, too.

 

 

Spreading Autism Awareness

This year our PTO decided to do a walk-a-thon for our Fall fundraiser. I loved the idea, and offered to work one of the shifts during the time that Cole was in preschool. My shift was yesterday, and luckily, it was a gorgeous day outside–sunny, low 70’s, and breezy.

When I arrived, I signed in with the office, got my visitor sticker, and found the event organizer outside. She debriefed those of us who were working, and assigned our positions around the building where we could help the students. I got to remind students to walk and be quiet around the corner, as the 2nd grade classrooms were there with windows open during instruction. I could handle that!

We also got the procedure for aiding an injured student. Yes, even though it is a walk-a-thon, elementary students manage to get injured. Usually scraped up knees occur. She was saying how she was relieved that we all showed up for our shift, because the early shift was short 2 parents, and a child got injured, and it was chaos. A brief discussion ensued, and during that discussion, the identity of the  accident victim came out. Three of us knew the child, and also knew of a condition that this child has, which causes poor motor control and clumsiness.

One of the moms mentioned that she knew the child as a toddler, and that the delays were evident then, and that the child did do Early Intervention (EI). It took forever for the child to get diagnosed, apparently. The pediatrician kept insisting that the child would catch up…it was “just a boy thing”. That mom, who has a neuro-typical son, said she hates it when anyone says something is a “boy thing”. I agreed. I mentioned my frustration with our pediatrician when Tate was young, and we were voicing concerns about his lack of speech, lack of coordination, his meltdowns, his inability to sleep through the night, his lack of socialization, etc, etc, etc.

I went on to clarify that Tate has Autism, and is currently in the instructional first grade classroom. The event organizer, whose son is in Jake’s class, looked at me wide-eyed. She had no idea that Tate is autistic. I mentioned that Tate didn’t talk until he was three, and that he was completely dysregulated until his EI speech therapist put us in touch with an OT who specialized in sensory disorder. One of the parents interrupted me.

“Oh, your son has Asperger’s.”

No. He has classic autism.

(Look of confusion.) “But he talks.”

Children with autism can talk. My son struggles with pragmatic language and using language appropriately, but he talks quite well. Too much sometimes. (Little laugh…and smile.)

(Blank/startled stare) “Oh..My nephew has Asperger’s, and we were told it was Asperger’s because he talks.”

There is a lot more to it…that’s why it’s a spectrum. My son functions well in a controlled environment, but he had delayed speech, social issues, sensory issues, motor delays, no pretend play, and so on. He does plenty of therapy to help him learn how to navigate in the typical world. This is why he’s in the instructional classroom…you know, self-contained.

“Ohhhh…”

Luckily this conversation segued into a conversation about the instructional (self-contained) classrooms at our school, and I felt less awkward as we discussed the different classrooms and how our district handles the self-contained program. The mom who tried to correct me about Tate’s diagnosis did apologize. I told her not to worry about it…that misunderstanding happens often. I wish I had encouraged her to read more, but I didn’t. Next time.

But, I will give myself a little credit. In the past, the people-pleaser in me would have let her just correct me and we’d go on. Not any more. Autism is so misunderstood, and as a parent of a child who has it, I want to make sure that I don’t allow those misunderstandings to continue. I will always speak up for Tate and for the other 1 in 88 children who have autism. They deserve no less.

An Apple A Day

“Keeps the doctor away”….or so they say. Yesterday we had Tate’s 6-year-old well visit. I finally got there after two rescheduled appointments. Because of our rescheduling, we didn’t get our preferred pediatrician…the doctor who is well aware of Tate’s developmental delays and Autism diagnosis. Also, because we didn’t get our preferred ped, we didn’t get the PA who knows us.

The PA called Tate’s name, and we walked in. As we walked towards the scale & measuring stick, she instructed Tate to take off his shoes. He did, but then sat on the floor. I reminded him that she had to weigh him and measure how tall he’s gotten. He stepped on the scale, as I prompted him to keep his hands on his tummy (so as to NOT play with the scale buttons). He weighed 45.8 pounds and was 43 and some fraction inches tall.

We were ushered into the smallest exam room..oh, yay. The PA started the inquisition Q&A. First, I was asked if I had any concerns. I stated that I am concerned about his sleep & his growth–both of which are affected by his med, Vyvanse, for his ADHD. I quickly added that he is also autistic. If I wasn’t mistaken, there was a sigh of exasperation..but I may have imagined it.

We continued with her list of questions. Yes, he likes school. No, he doesn’t eat a varied diet (hence my worries about his growth). Yes, he drinks tap water.

We got to a point where she asked Tate “do you feel good about yourself?” He stared blankly. “Tate, when you look in the mirror, do you like what you see?” I calmly mentioned that he seems to have decent self-esteem. She quipped that she wanted him to answer. I told her that wasn’t likely going to happen, as he is autistic, with receptive speech delay, and really doesn’t understand her question. Suddenly, Tate busted out with, “un-der-wear, STINK-bugs”. I looked at her with satisfaction, but she wouldn’t meet my glance. Hrmph!

She asked Tate about school, again. He said it was stinky.  He was clearly done with the convo. She then asked me/him about his friends. Did he like his friends/do they play well together. For effing real?! What part of “Tate is autistic” was she not understanding?!  Trying to keep my cool, I explained that social situations and relationships are a big struggle for Tate, because he is autisitic, and social situations are the areas in which he lags most.

She seemed utterly inconvenienced by the time she left the room. Whatever. I made a mental note to (a) blog about this and (b) write to the ped office about better educating staff about Autism.

Our experience with the ped was satisfactory. While no expert in autism, he did seem to have a base-level understanding of it. He didn’t make me feel like I was wasting his time, and he answered my concerns in a way that satisfied me. He did suggest enrolling Tate in some activities with typically developing children, to further his social skills. (One step ahead of you, bub.) But, he also praised our parenting and said we were doing the right things. (A little flattery can’t hurt, right?)

So, we made it out of there…and Tate got his sucker, which was his M.O. I am still shaking my head over the whole PA thing….just another example of how much more training regular pediatricians and their staff need on the topic of autism.

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