A family's story

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.

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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.

The Struggle is Real

In preparation for his transition to middle school, the team and we decided that Tate should have his triennial evaluation with the team that knows him, as well as in an environment that isn’t foreign to him. We opened his domain this week. Now we wait…and my anxiety is spiking.

I am a mess as I start to dig deep to prepare for this transition. Yes, I know Jake is doing just fine in his environment. (Although I still worry about the social aspects for him.) However, Tate is a different child, with different needs and the struggle is real.

My greatest worry is that our district really doesn’t have a place for him. Not that he really has ever clearly fit into the slot that is available to him….but even more so now that we are barreling towards middle school, his needs and the way our district structures things don’t seem to mesh.

First of all, we are a 2 middle school district. Our “home” school has an instructional class and resource. Tate will likely not fit into either of those classes. The other middle school, waaaayyyyy across town has an instructional class that is cross-categorical and provides the students with a more targeted, easily accessible curriculum. I’m not sure if they have a life-skill component…but that might be good for him. My struggle is that there is no available information on any programming for next year.

Tate is capable of learning and doing work that is modified to account for his autism. The issue is that he just is not quite able to attend and sit still and ignore peer behavior. It ALL affects him. He hears the buzzing of the flourescent lights and cannot focus. He sees his friend flipping a pencil and he becomes entranced by the rhythm. Peers, who find work difficult, know that Tate will react and get off topic with just the utterance of a word. So they say, “Fart”quietly to Tate, and Tate is off and running with a script, a giggle, and off topic talk.

I see the math that my older son is doing in his instructional math class in 7th grade. I know what he did as a 6th grader in that class. Tate is so far behind even that material. There are too many problems on a page for him, too. He requires a lot more individualized instruction. The 15 or so kids in Jake’s math class would be too much for Tate. He does better in a smaller class size.

His hormones are starting to rev up. Whereas his older brother is more delayed in the onset of puberty and such, Tate is right on schedule. He is girl crazy, and his body is definitely maturing on schedule. When a cute girl about his age acknowledges him, he  isn’t sure how to handle this, so he gets flustered and starts shouting his version of swear words. We are working on this in therapy, but it is slow coming. I worry that in a self-contained environment, we are just prolonging this process…but I also can’t see how he’s going to function well in a more fully-integrated environment, either.

I put a lot of value into public schools and their programming. In general, our district has done a lot of good for him. However, I have a nagging feeling that we should also be checking out some other options for next year. Outside placement, perhaps. If he’s in district, do they have sensory rooms somewhere for him?

I read about other children on the spectrum who are fully integrated in the classrooms. They are writing paragraphs, they are answering multi-step problems, they are able to stay on task without constant prompting. Maybe Tate isn’t designed for a traditional school setting, or even a more traditional instructional setting.

Being a parent is about always wondering what else can be done to get one’s child where he needs to be. *sigh* Tate does so well in a highly structured, one-to-one setting where he is task-based and can literally check off his tasks to earn his break/reward/etc. Traditional school is not set up that way.

I can’t go silently into the night. I cannot sit by as history is about to be made….and I fully intend to be on the right side of history, here.

If you have any desire to see public schools succeed and function over the next 4 years, I implore you to write and/or call  the HELP Committee, as well as to your state senators. Tell them that you do not support Betsy DeVos as the next Secretary of Education, and that you encourage him or her to vote NO when it is time to cast a vote for her appointment approval.

If you don’t do it for your children, do it for mine, and those like mine. Jake and Tate both rely on IDEA (Individuals with Disabilities Education Act) to receive a FREE and APPROPRIATE education. The IDEA holds public institutions accountable to provide interventions and accommodations and modifications so that my children can access the curriculum.

Ms. DeVos apparently has no idea that this is a FEDERAL law that needs to be enforced at the FEDERAL (NOT THE STATE) level.

Today I called and/or emailed every single member of the HELP Committee. Below is my script. It wasn’t easy. I was pushed way out of my comfort zone. BUT I did it. For them. My two amazing boys who work so damn hard every day to just get through the rigors of school.

“Hello, my name is Lisa and I’m a citizen of the state of ______. Two of my children depend on the IDEA to ensure that they have a Free and Appropriate Education. It is clear through watching the hearings for Mrs. DeVos that she is unaware of how IDEA should be enforced, as well as unaware of other issues that face our public schools and educators.

Please let Senator _________ know that I encourage him/her strongly to vote NO when it is time to approve Mrs. DeVos’s appointment to the role of Secretary of Education.

Thank you!”

Here is the list of the committee. Act now. Like Martin Luther King Junior said, “If I cannot do great things, I can do small things with greatness.”

Alexander, Lamar (TN),Chairman
Phone: (202) 224-4944
Enzi, Michael B. (WY)
Phone: (202) 224-3424
Burr, Richard (NC)
(202) 224-3154
Isakson, Johnny (GA)
(202) 224 – 3643
Paul, Rand (KY)
202-224-4343
Collins, Susan M. (ME)
(202) 224 – 2523
Cassidy, Bill (LA)
(202) 224-5824
Young, Todd (IN)
(202) 224 – 5623
Hatch, Orrin G. (UT)
(202) 224-5251
Roberts, Pat (KS)
202-224-4774
Murkowski, Lisa (AK)
(202)-224-6665
Scott, Tim (SC)
(202) 224-6121
Murray, Patty (WA), Ranking Member
(202) 224-2621
Sanders, Bernard (VT)
(202) 224-5141
Casey, Robert P. (PA)
(202) 224-6324
Franken, Al (MN)
(202) 224-5641
Bennet, Michael F. (CO)
202-224-5852
Whitehouse, Sheldon (RI)
(202) 224-2921
Baldwin, Tammy (WI)
(202) 224-5653
Murphy, Christopher (CT)
(202) 224-4041
Warren, Elizabeth (MA)
(202) 224-4543
Kaine, Tim (VA)
(202) 224-4024
Hassan, Margaret Wood (NH)
(202) 224-3324

Thirteen.

I am the parent of a teenager. A legitimate, literal teenager. Jake turned 13 today at 3:21 am. Our path to the teen years has been full of love, new experiences, firsts for me as a parent, and adventures. Some adventures have been exciting and invigorating. Others have caused us both discomfort, but we’ve grown along the way.

As Jake grows and starts having more of his own private experiences, I have to let go. It is bittersweet. I don’t want to see him hurt, or upset, or failing…but I know that it’s my job as a parent to let him experience all of those things…because that ultimately is how we grow and figure out what we want from life.

I want to shield him from the pain of rejection, the angst of failure, the hurt of loss. And yet, when I look at my life, my experiences, it was in those terribly uncomfortable moments that I grew. It wasn’t easy. It caused my anxiety to flare, and yet, with my mom guiding me ever so gently with some advice, perhaps some nagging, and lots of love, she let me work through it. Often, I had a much better idea of what I wanted and needed in life once I was on the other side of the experience.

I know that the teen years are going to be challenging for both of us, and likely, in varying ways. I promise to be his shepherd, his beacon, to help get him through the storm. I hope he understands that. My actions are always inspired by concern, love, and the knowledge that independence is our endgame.

Happy 13th Birthday, my Jakey-P. I love you.

img_20140925_112204834_hdr

An unsure first time mom with her bundle of joy. I feel as unsure as I look in this picture, as we embark on teendom.

The In-Between

The boys start school in 10 days. Another summer has blown past us. It has been an up and down summer, but a mostly enjoyable one. Soon, my boys will be in 7th, 5th and 2nd grade. Amazingly, when I started this blog, my oldest was a 2nd grader…and now, well, my baby is knocking on that door.

School supplies have been organized, and those that needed to be replaced are purchased. Folders are un-creased and crisp and shiny. Crayons still have a pristine tip. We have piles for each in the spare bedroom. Now, we wait.

The “In-Between” can be a bit anxiety producing, I am not going to lie. I am not sleeping great. The boys are each showing their anxiety in their own way. I won’t mire you down in the details, but let’s just say that the apples don’t fall far from the tree, here.

Each of them checks the master calendar daily. New items are being written in often. Jake is allowed to go walk his schedule any time from 9-3:30 on Thursday. Cole has a playdate for incoming 2nd graders another afternoon. Next week, the younger 2 have elementary school “Meet the Staff” day. As we tick off the list of supplies and have our last summer flings with friends, they get more and more aware that (said in a Ned Stark voice), “The School Year is coming.”

Summer isn’t always easy, with it’s relaxed schedules and routines, but in some ways, it is easier for me. No homework battles. No shuffling three children to and fro between various after school activities that range from soccer to religious education to therapists to scouts. And let’s not get into the freedom from IEP concerns.

Yes, we are firmly in the “In-between”, and right now, it’s a mix of emotion. Should I be bummed about the end of the summer? Should I be worried about the school year? Should I be writing summaries for the various teachers as they are new to my child(ren)? Did I remember to get all of the supplies? Did we do everything summer-related on our list? Did we do too much therapy this summer? Too little? Should we try to cram in another summer event?

So, I will sit here, and enjoy my coffee, and contemplate the “In-between”…for soon, we will be fully entrenched in another school year…

Tuesday Ramblings

Sometimes I’m just not sure what to write about. The boys are older, and they want to keep so much more to themselves. Or, well, I know how I would have felt at 12 to have my mom blabbering on about my antics and cute phrases and ways of problem solving. I would have rolled my eyes and been SO EMBARRASSED if she said too much. So, discussing Jake is difficult for me. I will say, 6th grade has turned out to be much better for him than I ever could have thought. I am relieved…and worried for what 7th grade will bring. But isn’t that always the way?

Tate is almost 10. TEN! Gaah! Again, when I was 10 there were things that would have made me flush with unease if my mom shared them. Granted, less would have bothered me at 10 than at 12, but it still would have been cringeworthy to hear her talk about some of the changes going on with my body, my brain, my relationships….I could go on. This year, I have heard from several of Tate’s support staff that he is much more engaged, much more talkative, much more….happy. Considering the roller coaster that 4th grade has been, I will take these little victories. This is a big transition year. No longer a *little* kid, not quite a *big* kid…just kind of stuck in limbo. The academic expectations are greater. Parents and teachers, alike, expect more maturity. Independence has been a buzzword all year. And for a kiddo who is not quite at the same developmental level as others, well, independence is hard, yo.

Cole is plowing through first grade. I can’t get over how mature his face has gotten this year. That baby face is gone. *sniff* It is also such a different experience with Cole. EVERYTHING is a different experience. He is much more typical than not. I often find myself asking teachers and other parents if this is “typical”. I don’t have much to compare Cole’s experiences to, as his brothers’ trajectories are just different. I’ve been assured that Cole is exactly where he is supposed to be. Of course, I will always be vigilant and watching out, but I find myself worrying less about development with him, and more about how he deals with peer pressures and wanting to be accepted and all of that jazz. (Honestly, that gives me more gray hair and worry lines than the other issues, at times…)

I am doing okay, too. The winter, while not anything like the past 2 years, wore on me. We all had the stomach flu this winter season. All five of us. That was horrid. I hope we don’t do that again…ever. Then came the colds. And strep. And colds. And sinus infections. Let’s just say that I will be so very, very happy to see spring-like temps and weather this week, and going forward. We need “Cold and Flu” season to bid us adieu…SOOO done!

Despite all of the battling of germs that we have done, I have been relatively consistent with my exercise. I get in about 35-40 minutes during each weekday. Weekends are a little more relaxed, but I still get in most of my 10,000 steps. With sports starting, I will likely get up and move more…walking the fields, lugging chairs and coolers and umbrellas and sunscreen.

I am hit or miss with my quest to lose weight. I want to be healthy and lean…but damn, cheese and french bread and cookies are soooooo good.  I am working on using moderation!! Ironically, I find myself using “if, then” in terms of my diet. “If I eat well 5 days during the week, THEN I can have a treat on Saturday…” HAH!

I am also trying to let go of things I cannot control. This is SOOO hard for me. I want to CONTROL ALL OF THE THINGS. This is a work in progress.

 

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