A family's story

Posts tagged ‘special education’

The One Where I Voice an Opinion

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

Advertisements

With Appreciation…

It’s Teacher Appreciation Week. Yesterday, the boys brought their teachers flowers. Because it does take a literal village to help the boys succeed in school, we were very grateful that Costco sells big bouquets for cheap! With one bouquet, we were able to cover each teacher and specialist!

Thankfully the PTO reigned in the Teacher Appreciation Week festivities a couple of years ago. Back in the day we parents were asked to send in flowers, candy, school supplies, games and more to shower the teachers with thanks. Gratefully, we now just provide flowers and a gift, if we choose. Today the kids are wearing neon because the teachers have made their future so bright. Tomorrow they are dressing to impress (wear ‘nice’ clothes). Thursday they can make their teachers and specialists home made cards. Friday they can wear their teacher’s favorite color or school spirit colors.

Because we are grateful and appreciative of all that the boys’ teachers and specialists do for them, we provide gifts for them during Teacher Appreciation Week. I have to buy twelve gifts. And then, in another 5 weeks, we give end of the year tokens of thanks to our teachers and staff. I know that I don’t HAVE to give them anything. However, I know that my children each have their own set of challenges, and I want to thank the teachers and staff for their hard work during the school year to motivate my children to learn and grow. This year, particularly, has been a good year.  I can’t let that go unrecognized.

I’m grateful that most of the teachers enjoy a good gift card to Target or Starbucks. Those are easy to find, and I know that they will be used! The hard part comes with creating the “presentation”. Again, I know I don’t have to do anything big, but at the same time, my marketing background comes out, and I want to make it look good. To make it memorable.

So, off I go to figure that out…but really, I know that it’s not about the presentation. It’s about appreciating those whom work with my children to grow, progress, and learn. I am incredibly grateful for the good people out there whom treat my children with respect and dignity and let them see how much they can do in life and in school.

Behavior is Communication

Yesterday we had another IEP meeting for Jake. This one was to discuss the findings in the behaviorist’s Functional Behavior Assessment (FBA). She also had a Behavior Improvement Plan (BIP) proposal for him. We also discussed how much more he can rely upon the assistive technology in the classroom to assist in learning and accomplishing his goals. The meeting went fairly well. For the first time in a while, I feel hopeful about the rest of Jake’s 4th grade experience.

Essentially, Jake avoids tasks that are difficult…or that he perceives to be difficult. His preferred method of escape is to engage in a pretend play where he either uses small objects as his characters in his story, or he’ll draw his characters/animals and let them live in this fantasy story that he spins during instructional time. The behavior occurs 100%…yes, 100% of the time during large group instruction in the regular education setting. The problem? While he’s not disruptive to the class, he is disrupting and sabotaging his own learning. He misses the general lesson and explanation and then is lost when it comes time to do an in-class assignment. Case in point, last week he was observed during Social Studies. He engaged in his little play thing during the 20 minute discussion, lecture, only pausing when he was directly called upon by the teacher. Then, they had a worksheet to fill out, and he had no idea how to do it. He broke down in tears and ultimately ended up failing the worksheet. *sigh*

Another issue that was discovered is that he finds silent reading time to be very difficult. The behaviorist thinks it is that it is partially his sensory needs that get in the way, and that he just finds reading too exhausting. So, he’ll go through multiple books, flipping through them to look at pages. He never reads any of the books. (We see this at home at night when we do reading before bed. He just looks at pictures, and never reads the words.) One thing at home that has helped is to have him use his Read2go app on his iPad. With that app, books are read to him and highlight each word as they are read, so he isn’t missing anything or getting tripped up on more difficult words. He is engaged and has enjoyed a few books that way.

So, starting today at school, we sent in his home iPad with the app and his headphones. While we wait for the district to provide him with his own dedicated iPad, we will send his back and forth to home and school. He will be able to actually make productive use of his reading time. Also, he’ll be able to go in the reading corner and read in a sensory-friendly position. At home, he likes to be upside down or dangle his feet over the edge of the chair or bed. But he is reading and getting exposure to literature, so we’ll take it.

On the assistive technology front, the consultant is going to request that Jake gets his own iPad from the district. Then he’ll have access to his books from home on the Read2go app, and he’ll be able to use Paper Port Notes, Learning Ally, and a few other apps to help him with school assignments. A huge benefit is that his textbooks are available on the Learning Ally app, as long as an authorized educator downloads them for him. It would be huge for him to have all of his books available to listen to, rather than just read them on his own. The apps help him track during reading much more successfully than when he does it with his finger.

To address his pretend play during instruction time, we are going to try to have him doodle on some bubble letters. He can color them in, make some designs, scribble, etc, but he will have to have his hands on his desk during the class instruction. He has to engage in the doodling for 5 minute intervals. If he does that without issue, the teacher will increase it incrementally to see how long he can go over the  next few weeks. The behaviorist discussed how doodling (like vines, or letters, or scribbles or flowers) can actually be functional and help any of us attend during a lecture or discussion. Jake’s drawings don’t serve the same purpose, because he enters his own world and taps into that pleasure source where it is comforting and overrides all the “hard” aspects of school. If he can learn to just doodle to help him pay attention during class, it would help. He can draw his pictures and do his little pretend play during his free time.

The upside to this whole process is that we found out how much Jake is capable of doing. He is actually quite smart, and even when he escapes the hard part of learning, he is still achieving B’s and C’s with accommodations and modifications. He has capitalized on these learned behaviors to escape the difficulty of new material and topics. Learning new material is hard. It is challenging. And because he’s been allowed to just quietly go about his merry way for the past 4 years, he has learned that he can avoid the difficulty by quietly engaging in his own world. But that isn’t going to help him learn and be prepared for educational settings as he gets older.

Imagine how much closer to grade-level he’d be if he were more present during the instruction part of the day. Imagine how much more he’d learn if he were able to successfully participate in the class activities and discussions in his general education classroom! Surprisingly, when he’s in his resource room, he is much more on topic and engaged. He is able to be a part of the group discussions and keep up with the instruction. The behaviorist only saw the avoidance behaviors during individual work time, when he should be working on a worksheet or reading a chapter on his own.

Our goal, here, is to get him more engaged in the classroom, and get him more functionally participatory in the setting. If this proves to be too challenging for him, we have our answer that he does belong in a more restricted environment. But, for now, we are going to try to help him learn how to be successful in a regular education setting…which is where Hubz and I, and a few others, think he belongs!

But Wait….

You know that scene from A Christmas Story where Ralphie FINALLY gets his chance to tell Santa that he wants the Daisy Red Rider Carbine Action BB Gun….and he draws a total blank? When Santa suggests a football, he nods along, not sure what to do with himself…just kind of frozen in the moment? And, how once the elf puts him on the slide and out of the way, with a football on the way for his big gift, Ralphie jumps into action and awareness?

Well, that pretty much sums up how things have been going here with Jake’s education the past few weeks. We have been in a whirlwind of activity. I know that I had mentioned that Jake had an IEP meeting coming up on the 30th of January. Let’s just say that it didn’t go quite as we had hoped, and let’s just say that placement changes were encouraged, and only once we had a few moments to actually breathe and take it all in did it seem like the placement was a *wee* bit premature and a *wee* bit too restrictive for our liking. We THANKFULLY did not sign when we left that morning. And we THANKFULLY observed the new placement and voiced our concerns with the coordinator of special services. And we THANKFULLY spoke VERY FRANKLY with Jake and made some discoveries that were heartbreaking.

Jake’s anxiety and stress were at fever pitch. He was miserable. He was not able to pull it together in school to learn or demonstrate that he knew what had been taught. The staff was incredibly frustrated. They feel that they have tried everything. Something was broken. During the first weekend of February we sat down to talk to Jake about his schoolwork, anxiety and struggles at school. We also wanted to see how he felt about being in a smaller environment for his entire day…instead of for most of it. After promising that he wouldn’t get into trouble…and that no one else would get into trouble…Jake spilled his soul. He is being bullied. Other kids in the class are being bullied. By one kid. ONE KID.

Jake said he liked the resource room, but he also really likes being with all of the other kids. He admitted that he was scared to go back to his class. He didn’t feel comfortable in there all the time. He indicated that this child made him feel scared and upset. He said when the child talked to him, Jake’s head got fuzzy and his knees felt squishy. I probed more…I think Jake was having the “fight or flight” response a lot during his day. NO WONDER he was so heightened and dysregulated and unable to hold it together. I wrote to his team…and I know that I was not the only parent to bring up the bully situation lately. And yet, that bully is still in the classroom….

We also strongly suspect that some of Jake’s avoidance behaviors are learned and reinforced. We were told more than once over the past few weeks that when he gets really stubborn and quiet and does his little shake thing where he won’t do the work (he’s avoiding curriculum that is difficult for him) some of the staff let him just do what he wants…like sit there and take as much time as he wants to regulate. Or to sit there and draw so that he can calm down. Or he purposely knocks his paper on the floor and goes under the table to pick it up and takes a few minutes…and they let it happen. Because, well, he needs breaks. You might be thinking, Nomygodtheydidnot. But, yeah, they did…

Hubz and I aren’t saying that a more restrictive environment is never a possibility…but we are saying that we want to exhaust all options before we get to that point.

We had a second IEP meeting the other day to get a Functional Behavior Analysis done for Jake in his current setting. We really want the behavior analyst to observe and give us some data and information surrounding what is producing the anxiety at school. We have our ideas. The members of the IEP team have theirs. We are not exactly on the same page. At points during our meeting, I honestly felt like we weren’t even in the same book.

We meet again in March. By that time, he should be more comfortable with using his assistive technology at home and in the classroom. The behavior analyst will have enough observations and interviewing and data collected to address the FBA. With that, we should hopefully be able to put a BIP into place for the remainder of the school year. Aaaandd, we’ll meet again at the end of the year to determine placement for next year.

One thing I truly do not understand in this whole process is how we got from the IEP in October where things were going ok…not super-duper fantastic, but ok, to well, he needs to be in a really restrictive environment. It’s like going from the first chapter in the first book of a trilogy to the climax of the entire story arc at the end of the third book. ARGH!!!

AAAAaaand another thing…as a parent it is incredibly frustrating to have 2 children in the same district…in the same SCHOOL, and one is getting the right supports and curriculum and so on and so forth..and the other is just…not. It makes my head spin…my heart ache…and stirs some passions within that I didn’t know existed.

I will guarantee one thing….they’re going to hear me roar.

The Extra Mile

We are very fortunate that our boys have such wonderful teams to help them succeed in school. I read many horror stories about denial of services, lack of accommodations, and falling through the cracks. Sometimes I think it’s necessary to shout out to the educators to let them know that their efforts are appreciated.

For example, Jake has been floundering. He’s overwhelmed, and school work is too much. Just prior to Thanksgiving, I had a few reports that were cause for concern. When I threw out a few questions to his team for clarification, every single one of the teachers and specialists replied to clarify how things were “going down” in their respective classrooms/sessions. We came up with a few strategies to help Jake power through the tough times. I got more feedback this week that he’s calmer and more relaxed.

Unfortunately, Jake’s resource teacher is having some health issues. She is on leave through January. I received a call from the principal that was very matter-of-fact. I appreciated that she let me know. Additionally, the resource teacher called me to inform me personally, as she knows Jake and how he struggles when his routine is changed. She started to cry on the phone, and without breaching her privacy, I told her that we’d work with Jake and help him through..and that she needed to focus on her health. We talked to Jake about his resource teacher’s absence, and discussed ways that he can get help if he’s not comfortable with the substitute.

Yesterday, Jake’s regular ed teacher stopped me in the hallway when I was at the school to get Tate for therapy. She wanted to make sure that we knew that the resource teacher was going to be out..and that she and the resource teacher really tried to impart upon the administration that the substitute be for the duration…and also be competent. The students who receive resource help cannot afford to lose 2 and a half weeks of instruction with an ill-prepared fill-in. It sounds promising for now, but my guess is that Hubz and I will be doing some hard-core tutoring over the next couple of weeks to make sure Jake stays on track.

Switching gears to Tate, his teacher put together a fantabulous resource book for each student, based on his/her abilities and present levels. The book goes between home and school and includes tools for the various subjects. It is amazeballs. I think I will do an entire post on this tool, as I think EVERY child should have one. I may even make one up for Jake, based on Tate’s!!

Tate’s teacher also created a “Good Morning” book for him. It goes over a basic routine for Tate’s morning, and it includes ways he can greet his family, teachers, bus driver and friends. The added bonus of this book is that Tate LOVES to look at pictures of his classmates, so he happily does activities he doesn’t care much for in order to have time with his book to look at pictures of his friends! Motivational tool!!!

This week has been rough for Tate in terms of re-entry to school after a holiday week. His behavior has been on “yellow” all week. When I asked his teacher to give me examples, she told me what had been happening, and said she had some strategies that she was going to try today to help him get back on track. She then emailed me to let me know that he had a fantastic morning, was engaged, talked with peers appropriately, and worked up to “purple”, which is the best behavior level he has.  She said he was incredibly proud of himself and happily chose a prize from the prize bucket.

His teacher also forwarded information to me about the Caring Santa program that is going on at various malls this weekend. She thought that it would be something Tate might like. We already  have plans to visit with Santa this Sunday, but I was incredibly appreciative that she took the time to let us know about the program (although I had seen it around the Interwebz).

Finally, she is writing an “I Can” book for Tate. In the book, there will be pictures of his school friends and teachers. It will give him strategies and ideas for social interaction with his peers, and has examples for him of different things he can do when he has finished his work in class, or if he needs help.

Our boys are incredibly lucky to have such invested teachers and specialists. We are fortunate that they are willing to work with them and us and to try new things so that our boys can learn and have a successful and relatively pleasant educational experience. I know that not everyone is so lucky….so I am very grateful!

Heavy

I met with Jake’s teacher and resource teacher today. They are seeing the same regression that we’re seeing at home. The inattention. The lack of focus. The copious amounts of impulsive behavior. The loss of independence. The loss of our “Jake”. In the 2 weeks since he’s been on the new medication he has lost so much. Yes, the tics have stopped being so pronounced, but he’s anxious, perseverative, and impulsive. Off the record, there are rumblings of a self-contained classroom next year if he doesn’t start improving. Self-contained. 

All of the glorious progress that we saw from last February until the end of this January seems to have vanished. *POOF* Jake is requiring constant input from his teachers. He is melting into puddles on the floor and in his chair because the work is too hard. It’s just too much. He’s falling back on the old pattern of depending on his old friend rather than branching out and playing with the boys. He’s requiring more help with self help chores at home. He needs constant reassurance and his anxiety is through the roof.

We all know he is capable of achieving great things. He is making such strides. Or was. I have to get him off of this medication. It is ruining his life. Literally. He knows he is out of control. He keeps talking about his brain going crazy…and he has been writing so many notes of apology to me, Hubz, Tate and Cole when he’s impulsive and inadvertently hurts one of us. It’s breaking my heart.

It all feels so heavy. All of this. The worrying. The parenting of a special needs child. Of two special needs children. The calls to the doctor. The shuffling kids from therapy to therapy. The insurance EOB’s that pour in. The expenses. The knowledge that my children are different, wait, that their neurology is so different and that they just don’t fit quite right into the standardized world.

And as heavy as it feels, I know I am not alone. I know there are other parents out there struggling with “the weight”. I do find comfort in knowing that there are others out there who understand..and who understand that when I say “this sucks” and “it’s not fair”…they know that it’s just my way of processing through the hurt of seeing my children struggle. So, even with this heaviness within me, I will pick myself up, and keep moving…because I have these beautiful children who deserve no less. And I will hang on to the hope that I’ve seen before..that my heart knows is out there for a better day.

 

 

Parent-Teacher Conference Success

Last week the boys brought home their first trimester report cards. I always get a little nervous on the days that they bring them home. This year, we have such open communication that I didn’t foresee any surprises, but there is still apprehension as the day arrives. I opened Tate’s report when he came home for therapy. I was ecstatic. Yes, he has a modified curriculum, but my son is kicking some booty this year. He is progressing towards grade-level in several areas. He is doing well with his math and spelling. The teacher is helping him stay interested when it comes to reading. He still wants to explain pictures in the books more than read the words, but he’s getting better. He’s making progress towards his IEP goals…only a month into the new IEP.

Jake made sure to tell me that his report card was in his folder as he popped out of the school. I read it when we got home. I was pleased. He is doing quite well in reading and spelling and social studies and science. He is making progress in math. His teachers have him pegged so well. Jake tries hard, when he wants to try hard. When he doesn’t, the teaching staff has to resort to motivators…and pep talks. His effort in math is inconsistent. He can do it, but because he doesn’t like it and struggles, he fights her with every ounce that he has left in him. Jake needs a lot of reassurance that he is on the right track. A lot. Like every 10 minutes. God bless his teachers for not getting irritated too much. They give him what he needs. He is grateful and lets them know that.

The day after report cards came home, we met with each of the boys’ teachers. In Jake’s room we had most of his team–regular ed teacher, student teacher, resource teacher, social worker, and speech therapist. He is progressing well in speech and social work. He achieved one of his first trimester goals in social work! The speech therapist is working on his pragmatic speech skills, and is noticing improvement with his peers, too. The teachers talked about his progress in reading and math. We are certain he can achieve a big leap in reading. His fluency, comprehension, and decoding skills have just all come together lately. He’s even trying harder books..and having success. He is splitting his reading time between the regular ed classroom and the resource room. He reads the story the regular ed kids read and then works on breaking it down with the resource teacher. We are all very impressed with his ability to get the work done.

We all wish his math class wasn’t at the end of the day. But that’s when the third grade has math. He’s tired, his meds are wearing off, and he is easily distracted. It is hard for him, so he tends to melt down a bit more. They are hoping for him to make a 10 point gain in the district assessments come January, but we aren’t sure if it will happen. We all tried to brainstorm different ways to help him succeed. We are all working together for his benefit.

Hubz and I raised concerns about Jake’s organizational skills. It was flagged on his report card as an area of concern, as well. We brainstormed in his conference. We decided that in order to motivate him to write down his assignments, we will let him use pens and Sharpies. He loves colors. The teachers also said that they would be comfortable with him doing homework in pen/ink, as long as it is neat. So now when he wants to write spelling sentences in purple pen, he can do so. I love that we can talk about it and come up with some new ideas for him. No one lets their ego get in the way…it’s all about getting him to achieve. I love it.

After Jake’s conference, we walked down the hall to Tate’s classroom. We chatted with his teacher and the social worker. Tate is doing so much better. His anxiety is much lower. He is not scripting nearly as much as he used to be. In fact, we were all in agreement that as soon as we put a BIP review into his IEP, the scripting stopped…at school and at home. He still does it, but not to the degree where it interferes with everything else. Tate is loving the visual schedules that the teacher provides him at his desk. He is able to change it every day according to his schedule. He is first to let his teacher know if she forgot to change anything on the main schedule on the board, too. That’s my Tater.

We talked about his passion for numbers. We are able to get him to do math willingly, and he’s getting better. He struggles with some of the various terms that are used in math, which mean the same thing…so we’re going to work on that with his teacher and his speech teacher. Until he gets more comfortable, his teacher will write the various terms so he sees them all at the top. For example, when they want him to find the EQUAL pieces, she will do: EQUAL/SAME/MATCH. For addition she writes: ADD/SUM/ALL TOGETHER. Tate is also starting to show his humorous side at school…that playful, charming side that Hubz and I know so well. He will recite the answer correctly for the teacher, then write down something incorrect. For instance, 1+1=2…and he’ll say it, but then write down a “3”. Then he smiles his megawatt smile and says, “Nooooo, that’s not it!” and erases the “3” and writes the “2”. Love that kid.

Social interactions are still a concern for us. I asked specifically about them. His teacher said that for Tate, peer interaction is still on his terms…unless it is prompted by an adult in the classroom. But he is getting better with fewer prompts and examples. The social worker is really working with him to help him learn to initiate himself into play. That is, by far, his biggest struggle. He tends to crash, literally, the party. Instead, they are working so hard with him to get him to use the right scripts for initiating peer play. He does ok, but only with the prompts. He’ll get there….I know he will. Already it is emerging at home…and of course, that doesn’t surprise anyone, as he’s so comfortable there with his brothers. It is a step in the right direction.

For the first time in a long time Hubz and I walked away from the conferences with a spring in our step, and a hopeful, positive outlook. As we told Tate’s team, we are in a good place right now. We know that there are other challenges and struggles ahead, but for today..this moment?! We are closer to hope and joy and relative status-quo than that hard place that we’ve found ourselves in for so long. And we like it. And we are enjoying it. And we will not take it for granted because a lot of blood, sweat, and tears went into this “place” that we’re in…and it will not be here for long. It is a great feeling to know that all of the choices and fights and compromises and being the squeaky wheels have paid off for our kids’ relative happiness and success.

Tag Cloud

Mama Is Only Human

my journey...

Zero Exit

by Sara Jagielski

Musings of an Aspie

one woman's thoughts about life on the spectrum

Finding Cooper's Voice

An honest and real look at nonverbal, severe autism.

Emma's Hope Book

Living Being Autistic

Carrie Cariello

Exploring the Colorful World of Autism

Gingerheaddad

A redheaded dad writing about parenting, autism and the odd piece of stuff

Grady P Brown - Author

Superheroes - Autism - Fantasy - Science Fiction

Swim in the Adult Pool

Finding humor in an ADHD life without water wings

Who Am I? Why Do You Care?

I am a woman on a journey. Where I'll end up is yet to be discovered.

Organized Babble

Babbling in the most coherent way possible

Addicted to Quippsy

In the not-so-distant future, you'll wish you wrote down everything your kids said. Now's your chance!

Filtered Light

“Sometimes the dreams that come true are the dreams you never even knew you had.” ~ Alice Sebold

that cynking feeling

You know the one I'm talking about . . .

Run Luau Run

Run Committed

beyond the stoplight

sharing resources to create caring classroom communities for all children

The Domestic Goddess

Marj Hatzell Has Been Giving Stay-at-Home-Moms a Bad Name since 2005