A family's story

Posts tagged ‘Tate’

Ensuring a Good Fit

 

Somehow, and I’m not exactly sure how we have gotten “here”, Tate is finishing up fifth grade, and we are prepping for middle school. Sixth grade. We are trying to determine how to make middle school successful for him.

We had our IEP meeting. We discussed his strengths. We discussed the challenges he faces. We agreed that his placement is the best option at this point in our district. While I understand the placement, I’d be remiss if I didn’t state that I worry that he won’t be challenged academically. He is more intelligent than those standardized tests indicate, that’s for sure. When he gets bored his “maladaptive” behaviors begin…he’s good about communicating non-verbally when the situation isn’t right. I will be monitoring the situation very closely next year, not hesitating to call meetings as needed to keep him on track.

Currently I’m frustrated that it took 6 months for the district to allow our BCBA to come observe the classroom and give some feedback as to what might help Tate. It is also exasperating that no one truly seems to understand that autistics have sensory needs that need to be anticipated and intervention needs to happen prior to a meltdown, not as a reactionary solution after the behavior occurs.

The hard truth is that there really isn’t any program in our district that is a great fit for Tate. We know that the general education setting, even with a 1:1 aide would be too difficult. The instructional program pulls back on adult support, and Tate requires many adult prompts to stay on task and to function in the classroom. Hence, he will be in a restrictive classroom of kids in grades 6-8 who require significant adult intervention. It also has a life-skills slant to it.

I visited the classroom where he’ll be in the fall. The observation itself went smoothly. The teacher is vibrant. She’s respectful. She has fun with her students. Most importantly, she treated each student as a PERSON. Even in my brief observation, it was obvious that the students each bring their own set of learning issues to the classroom. She was able to differentiate her approach towards the students. I was keenly aware of the respect she showed her students. She wanted to be there with them.

Unlike a fitting room with a new pair of jeans, I can’t try each one on for size and comfort. This is somewhat like a stitch fix order. We are making an educated guess at the fit, and when it comes down to it, we hope it fits like a glove..or maybe will work with slight tailoring. Fingers crossed.

Upside to this is that nothing is ever permanent. We can always call another meeting…but in the meantime, I hope I’m not lopping off a huge chunk of length for him that causes Tate to be confined to something that won’t work well in the long run.

Ah, the challenge of parenthood….always wondering if the decision is the best one.

The Good Stuff

Last week Tate’s 5th grade class participated in their outdoor education field trip. It’s a 3-day, 2-night trip to a state park. While the students are there, they are learning teamwork, independence, resilience and accountability. I love that our district provides this opportunity for its students at this age. 10/11 year olds are so much more capable of this type of work than we give them credit for.

I was incredibly uneasy about how Tate would handle the rigors of the trip. The teachers do a phenomenal job preparing the students for the trip. They discuss manners, practice family-style lunch, view videos and learn about the schedules of their day. The trip is highly structured, but it is also in a foreign environment, has “outside” instructors, and they are out in the elements. We talked about the trip at home, too. I knew he was prepared, but yet, it was so NEW and DIFFERENT. Those two things, alone, can be a minefield for my kid.

After discussions with his team and other parents, Hubz and I decided that I’d go down to the area where the trip was taking place and stay with Tate overnight in a hotel. We cut his trip to 2 days and 1 night. He DID get to take the bus with his peers, and he participated in almost all of the activities each day he was there.

Tate handled the trip quite well. Yes, he had anxiety. Yes, he didn’t sleep for 3 nights prior to the trip. But, he did it. I’m grateful that the team allowed flexibility, because Tate did sleep quite well in the hotel, and I know if he had been in the group dorms, it would not have gone so well.

One of the activities that the students do is to do birdwatching. Tate is a natural. His keen eye and ability to see the thing that is out of place in a background lent itself well to this endeavor. In fact, he enjoyed it so much and did such a great job explaining the birds to his peers that his team decided to have him do birdwatching both days, and it was great! He also really enjoyed building a shelter out of branches, leaves and twigs. The heavy work was perfect OT for him.

Each day that I picked Tate up from the event, his teacher told me that he handled it well and reported a few struggles, but nothing out of the ordinary and nothing that couldn’t be redirected. Also, Tate LOVED doing the table prep and bussing (they called it hopping). He was a pro, and even did a phenomenal job rinsing dishes in the kitchen.

To some, that might not seem like a big deal, but to anyone who has kids with differing abilities and neurodiversity, well, it was celebration time! If he can bus tables successfully at age 10, then what’s to say he can’t do that as an older teen? If he can follow “job” requirements and rules as a 5th grader, what’s to say he won’t be able to do that at age 18?

When we pulled out of the parking lot and headed home on his last day with his class, he thanked me for taking him. I thanked him for being a good sport. Then he told me to relax and turn the radio up. Adele was on and I was talking too much. My kiddo was brave. He was adventurous. He ate freaking turkey and mashed potatoes for dinner! The sky is the limit, my friends.

As we plod through the next few months of 5th grade and power through evaluations and testing, this experience gave me so much hope for what he’s going to be able to accomplish in middle school. He may not learn in a typical way, but he can and will learn. That much is for sure.

Semantics

This morning as I was chugging along on the treadmill, I decided to scroll through Facebook to entertain myself. The impending change in weather made it onto a few of my friends’ pages. (Mine, included.) There were posts about Lady Gaga, posts about Leonardo DiCaprio, posts about Chris Rock and the Girl Scout cookies, and posts about John Oliver discussing Trump. #MakeDonaldDrumpfAgain (That’s as political as I intend to get here.)

I noticed that a friend of mine had posted something on her page about autism and “gut” bacteria. I debated just letting it go, but I decided to read it. It was an almost two-year-old article about the link between autistic behaviors and “gut” issues. I read it. It’s information that has been churned out several times. I don’t disregard that many autistics have issues with their GI tracts and such. I have seen that. I’ve experienced that. But the headline of this particular article baited readers into thinking that “gut” imbalance CAUSES autism and a “simple” daily probiotic would make challenges disappear…. Pffffftttttt.

I did respond, saying that while there may be some correlation, autism is neurological in nature, and really is the way the brain works.  I noticed that someone had posted about the fact that “wouldn’t it be great to do a combination of behavior therapy and probiotic to help autism, which proves it isn’t caused by vaccines and is a “birth” defect.” I knew what the person probably meant, but, I took a little umbrage to the use of the word, “defect”.

Now, my son has challenges. He has deficits as compared with like-age peers in terms of comprehension, language, processing, etc…but “defective”? I can’t buy into that. When I looked up the word “defect” in the dictionary, it stated, “a shortcoming, fault, imperfection”. Aren’t we all a little defective, then? I mean, really.

I then looked up the word “disorder”. When applied in a medical sense, it was listed as, “a disruption of normal physical or mental function”. Well, we all know “normal” is just a setting on a dryer. Does my son follow neurological development of other children his age?! Hells no–so yeah, I guess disorder applies. Further down, I saw a definition of “disorder” as a verb listed as “disrupt the systematic functioning or neat arrangement of”. I chuckled at that definition, especially when I consider how routine-dependent my son can be. And have you seen the way he lines up his Paw Patrol guys?!

We also refer to autism as a disability. Sooo, I went to look up the word “disability”. Dictionary.com says, “A disadvantage or deficiency, especially a physical or mental impairment,that prevents or restricts normal achievement.” (emphasis is my own) My son approaches the world from a different angle than most. I wouldn’t say he’s wrong. Just, well, different. As long as he has success and happiness and support..well, I think the kid’s gonna be all right. I will concede that it may take him longer to arrive, but he’s going to get to the finish line. He will.

I guess what I’m getting at is, if that person says, “potato”, I say “potahtoh”. She says “defect”, I say, “Unique vision and approach to the world.” And let’s just leave it at that….

 

They Belong

Last night I was feverishly putting the finishing touches on some teacher gifts for the boys’ “village”. I had 18, yes, EIGHTEEN, fantastic people to write thank you’s to, buy gifts for, and thank for a job well done.

As I was shaking a hand cramp out from using a hole punch to do some gift card magic (I NEED to stay off Pinterest), I saw a notification on my phone that Jean, who blogs at Stimeyland, had written a new post. I decided to take a wee little break from my sweatshop (seriously, I did say “feverishly”) and read her post. My heart sank. I wanted to cry. I wanted to scream. It was as if I had ripped a scab off of a fresh wound. You can read the post here. (And if you’re not well acquainted with her blog, I suggest you read some more…she writes some great stuff.)

Her son, and a couple of other kiddos who are in a segregated classroom because their learning styles are a smidge different from the average John Q. Student, were not included on a 5th grade “graduate” bulletin board. It took NINE weeks to get said kiddos on the board. And this was only after one of the other moms had raised her voice and then, in an act of awesomeness, took a picture of the three excluded kids and posted that sucker on the board.

Just this week, we experienced something similar…and you know what, it hurts. The boys’ last day of school is today. Earlier in the week, the boys got their long-awaited yearbooks. I know, I know…yearbooks in elementary school….but they are really well done, and this year we could personalize 2 pages for our children. So, of course, I had to buy TWO yearbooks. Clever, PTO, clever!!!

The first thing Tate did when he got home from school was rip the yearbook from his folder. He shredded the plastic off of that sucker faster than I could say, “hang on!”. Looking at pictures of his friends is highly motivating for him. It always has been. He opened to the front 2 pages that I personalized. He carefully looked at each picture. The impulsivity that we usually see was gone. He was calm. He was smiling–from ear to ear. He was touching each picture of him and his classmates. He was in his happy place.

After perusing his personalized pictures, Tate wanted to see his class picture. Who wouldn’t? Now, I don’t know if all districts are like this, but in ours, the self-contained classrooms do not get their own pictures in the school year book. Privacy and all that jazz. (I, personally, don’t care, but I get it…) Tate went to the general education class that he pushes into. There he found his beaming face from September. He also found the 3 other kiddos who push into that classroom with him. He wanted to know where his other friends were. I told him to turn to the next page.

We turned the page…. And the 4 other children from his classroom were not in there!!!!! Three of them made the candid photos on the other side of the spread, but there are 4 children in second grade who did.not.get.into.the.yearbook. I kept looking. I checked Jake’s yearbook. They weren’t in there either. It was totally an oversight..and NO ONE CAUGHT IT. And insult to injury?! The group photo from a class party (every class has one group photo on the candid page) doesn’t include the 4 kiddos, either. Tate’s class does…but this one didn’t. (I was not on the Yearbook committee…but I have now offered my services as a proofreader and copy editor…I kind of did that before I decided to quit my outside job.)

I am hurt. We’re all about “inclusion”, and yet, it is very clear that sometimes, we don’t belong. Do you know how that feels? Chances are that everyone does…and it really stinks. I know it was human error and oversight..but seriously…FOUR SECOND GRADERS WERE LEFT OUT OF THE  YEARBOOK..and that’s not right. They belong, dammit. They belong, they are a part of that school, and they should be in that yearbook. They spend 10 months, give or take, with these other children. They eat lunch beside them. They play dodgeball in gym with them. Some even participate in science or math with them. And to leave them out of the yearbook is total, utter, garbage.

I also sent a letter to the Yearbook chair to let her know. I copied Tate’s fantastic teacher. Know what? She was never asked to review the yearbook. Not once. And you know what? She would have caught this and made sure it was fixed…because she knows. She knows how fantastic each and every one of these kids are..and the special qualities that they bring to the table, so to speak.

There was an apology issued. The yearbook chair sent an email out to the teachers, and copied me on it. Tate’s teacher asked if she would send an apology to the families affected, and the yearbook chair did that too. The apology helps…and I am now a sitting member on the yearbook committee, so that should help…but for right now? It is fresh and it stings.

Simply: They belong. We need to be respectful of all of our school community. Every.single.one.

There was Joy in Muddville

A little over three years ago, I registered Tate for baseball. Regular, coach-pitch little league baseball, to be exact. Many of our friends and fellow parents encouraged it. “It will be good for him,” they said. “It will channel that energy,” they said. “He just needs something to focus on,” they said. 

Two months after registering Tate for baseball, we sat in his neuropsychologist’s office as she detailed all the ways that the testing and interviews indicated that Tate was autistic. I asked about school. I asked about academics. I asked about OT, PT, speech, and inquired about ABA. Hubz asked about sports…did she think it was a good idea. She said that sometimes sports can be very good for kids like Tate.

We let it rest. We finished out the school year and put our energies into other things…finding an ABA team, fighting insurance, trying to get some sleep. Suddenly, we got Tate’s baseball team assignment. Oh…. I contacted his coach, the fabulous Mrs. B, and gave her the run-down of our situation. I explained that he was autistic, and asked if it would be better not to participate. The fabulous Mrs. B told us that she was a special education teacher (before she took some time off to be home with her children), and that she’d love to work with Tate.

By the grace of God, we had the fabulous Mrs. B. She was essentially Tate’s buddy during the baseball season. She went up to bat with him. She stood with him at the various positions in the infield and outfield. She was, essentially, turning the experience into “Buddy Baseball”. 

There was no joy in Muddville, however, for us that season. Tate struggled to maintain focus during the game. (Have you ever seen a child at bat who could not, COULD NOT, watch the ball?!) He did not interact with the peers on the team much at all..he sat on the bench and stimmed with sticks and played with his water bottle. Often, I would sit in the dugout with him. Several times we left the game after an inning of play (they usually played 3 innings). Most of his communication was via whining or echolalia. It was not a fun experience, and he begged off of going to the final game and after party. We obliged. It was simply too much.

Our area simply did not have baseball available to children with special needs. We enrolled Tate in VIP soccer through a local AYSO. He has done really well with that soccer program. He enjoys running up and down the field, interacting with his peers, and scoring goals. He does pretty well, too.

This past January I saw an announcement from our local baseball association. They were starting a Challenger Division for children with special needs. Anyone ages 4-18, who had special needs could join. I was super excited. I posted about it on Facebook. I signed him up the first chance I got! Amazingly, through the generosity of some local business sponsors, the organization offered the first season of Challenger Division baseball to the participants FREE OF CHARGE! Now, I would have gladly paid the typical fee for baseball, especially for Challenger Division, but I was floored by the free offering. It made me feel like they really wanted to make this happen for kids like Tate.

There was a smallish-group of parents who registered their children for the league. Emails started to trickle in from the organizer of the Challenger Division. The excitement that he had for this division was amazing. He was so INTO it. He encouraged us to ask others to join the fun. Within a few weeks, they had enough participants for 4 teams. That was fantastic!

We started to talk to Tate about baseball. He was excited to play it. He kept asking about “the fabulous Mrs. B”. (Memory like an elephant, I tell ya!) I told him that she wouldn’t be coaching, but that a dad of a boy who rides his bus would be. He seemed okay with that. The brother of one of Jake’s cub scout friends signed up to be Tate’s “buddy”. We were on a roll.

The first day of Challenger baseball was a dreary, rainy Sunday. Tate was quite excited about it, though. Instead of the usual insistence that we not go somewhere new, he was totally on board. Even when we got to the facility where they were going to practice, and it was loud and had weird lighting, Tate handled it like a pro. He took to his buddy immediately. He responded to the coaching. He didn’t search me out or refuse to leave my side. He threw me his water bottle and told me to go sit with the other parents!! 

Tate did increasingly better with each practice. He was fielding the ball okay, able to pay attention and throw in the direction that his buddy instructed him to do. He was hitting the coach-pitched ball when he tried. He was crushing it off of the tee. He also can throw!! Wowsers!! (Hubz is super excited that our LEFTY is showing such promise with that throwing arm…ha ha.)

This past Sunday was “Opening Day”. As part of the kick-off of the inaugural season of Challenger Division Baseball, the baseball organization had people singing the National Anthem, announcing the game, and then provided free hot dogs, chips, and drinks for all players, buddies, and their families afterwards! The local Culvers provided vanilla and chocolate custard, and the fire department had a fire truck and 3 firemen there for some fun, too.

I was worried that it might be too much for Tate. I was worried that he would melt down and freak out. Then, when his buddy couldn’t make it to our game because of a prior commitment, I was like, oh, he’s going to be toast. But, nope, he did a fantastic job!!

Tate played in the field and stood exactly where he was supposed to stand. He passed the ball around the bases like he was instructed. When he got up to bat, he hit the coach-pitched ball and it went a decent distance…and he hit it all by himself, without anyone helping him!!!! The smile beaming from his face as he ran towards first base each time was priceless. Even if future games go to hell in a handbasket, we will have THAT to remember for ever and always.

So, my friends, there was much joy in Muddville, as Mighty Tate did NOT strike out at the bat….he participated in his game, hit the ball, TALKED to his teammates, and even joked with a few of them. 

The moral of my story is this….to any of the people who don’t think that there’s a special something about special needs sports…well, I dare you to hold onto that belief after watching one of our baseball games. Or one of Tate’s soccer games. We, as parents, get to witness a little miracle on the field each and every week….and sometimes that miracle is that our kiddo is able to just get ONTO the field…and we’ll take it. 

 

 

Welcome, Eight!!

Tate is eight! On this day in 2006 I went to a routine doctor’s appointment. Little did I know that I was in full-blown labor. Taters came into this world 3 weeks and 1 day early. He has always been on his own timeline…and he has taught me so much about trusting my instincts and trying not to compare us with everyone else.

Tate is an amazingly strong child. He endures struggles and difficulties with aplomb and charm. He keeps plugging along, even when it isn’t easy. He really is an inspiration. He also has such a zest for life and is so passionate about so many things. I wish we all could laugh as heartily as he does and dance and enjoy music like we didn’t care who was watching like he does. He marches to the beat of his own drum, and it is going to serve him well in this world.

Happy Birthday, my sweet, sweet boy. I love you to the moon and back and then some….

Now I shall inundate you with photos of his 8 years….he’s pretty darn adorable, if I do say so myself…and he exudes joy. Just look….

A snowman with Jake

My water obsession in early 2010

watching tv 2008

Watching TV in a box…to define my space and help me feel secure in February 2008

our boys

Welcome home, Cole!!!

On the day that I was born…I tried to block out the bright lights from my mom’s room…

2nd Birthday with monkey quilt from Grandma

Doing a little sensory seeking on my 1st birthday

Seven was a great year…with Doc McStuffins

Playdoh on my 6th birthday

I’m gonna rock you like a hurricane

Playing with crayons and markers in 2008

My 2nd birthday was a ton of fun

I'm three!

Turning three was a happy day

EndofJuly-EarlyAugust07010

When I used to eat varied foods…in 2007

easter 11

Decorating Easter cookies on my 5th birthday

December08018

A sense of wonder

bros

Jake and Tate

August08012

Do I need to turn this car around?

Napping on the fly…

4th bday nate

Tate and me on his birthday

4 years old

Opening presents on my 4th birthday

Heading to 3 year old Early Childhood Preschool

Aw, Peanut Butter and Jelly

Yesterday winter came back with a vengeance. We had snow. SNOW. I know it’s April. I know we live in the Midwest. However, after a weekend in which we got to experience our first day above 70 degrees since early October, it seemed like such a travesty that we had to suffer through SNOW again. *sigh*

As it snowed, quite steadily, throughout the late afternoon and evening, Tate let us know his feelings about said weather. “Aw, Peanut Butter and Jelly Sandwiches”. He said this numerous times. He also said that the weather was “ridiculous”. He was NOT happy. I think it was mostly because he wants to go outside and play with our hose and water…and, well, when it’s 31 degrees and snowing, that’s just NOT going to happen. He demands that spring return.

This morning I had to scrape my van. For the duration of winter, I had been parking the van in the garage, because in November my van doors froze shut for a day. After a hailstorm this weekend that dinged up Hubz’s car, I am parking my beat-up mom-mobile out there. The downside to parking outside in a freak snow shower? My electrical sliding doors were frozen shut–again. To quote Tate, “Aw, Peanut Butter and Jelly Sandwiches”. Ugh. Luckily, the sun was shining this morning and the passenger side of my van was thawed enough that we could get into the van via those doors. Doubly lucky, those are the doors that the kids use to exit the car in the carpool line at school. I didn’t have enough energy this morning to be “that” mom….

It’s funny how the things our kids say become part of our family lexicon. Lately, when I get frustrated or peeved, I find myself uttering, “Aw, Peanut Butter and Jelly!”. I guess that is better than “dammit” or “S#!%” or the big ‘ol F— word. Clearly, in his social groups at school he is being taught substitute phrases for expletives. I’ll take it…and it sounds a whole lot better when it becomes echolalic . A second grader muttering “peanut butter and jelly sandwiches” over and over again is much more appealing, and a lot less attention getting than, “Oh, s#!%!”.

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