A family's story

Posts tagged ‘IEP’

Middle School is looming…

April 29th. How the heck is it already April 29th?! This year really seems to have moved full speed ahead!!! The boys are done with this school year in 6 weeks. I am ironing out therapy, summer school, and summer activity schedules right now. It seems so far away, and yet, so close.

I also can’t believe that we are nearing the end of the school year. Big changes loom ahead. Jake heads off to middle school in the fall. MIDDLE SCHOOL. I hated middle school…well, back then it was called Junior High. And who am I kidding, I went to a K-8 parochial school…but the 6-8 graders did have their own area of the school. It was the armpit of my educational experience. Yuck. I am trying not to project that too much upon him.

This is another step closer to his independence, to him being a “big” kid. Middle schoolers are required to know their schedules, juggle locker combinations, dress in a PE uniform for gym, and switch classrooms for every period. That’s a lot of moving around and keeping things straight for any child, let alone for a kiddo with executive functioning issues, focus and attention issues, and anxiety. I need to calm my own anxiety so that I will be able to help him with strategies as the struggles occur. And they will occur…but hopefully we can work through them and stop struggles from taking over.

Middle School also means a new IEP team. A new group of teachers, specialists, and the like. We are currently in the process of re-evaluation. It’s time for his 3-year reassessment. I know he’ll still qualify for services, but I’m also nervous about what may come out of this meeting. Unfortunately, we had already had his yearly review meeting in February, in which it was recommended that he take Instructional Math and Instructional Reading/Language Arts, which are smaller classes. We worry that he will lose ground on the curriculum. He is in a co-taught classroom for other subjects.

With the reevaluation, I’m hoping that he will score higher in language arts/reading to justify a co-taught experience. I really do think he can handle it. It’s not like he doesn’t get support at home. We have tutors, he works with me, he works with Hubz. I just think he CAN do it, if that is what we expect of him. The math, well, the math I understand. He is floundering. It would help if he used his tools…and if the teachers reinforced that he should use his tools. I understand that he needs to be independent and needs to figure some things out on his own, but seriously, give the kid a checklist so that he has a reminder of what he CAN use in class to help him.

As much as Jake continues to have academic struggles, it has been a banger year for social/emotional growth. He is doing amazingly well. We had to make some tough decisions, but ultimately, our choices have worked well. He is happier, more well-adjusted, and able to address triggers and cope with them. He is playing with the boys on the playground and eating lunch with them in the cafeteria. He is a part of it…instead of being mothered by the girls, he has friends…and his confidence is growing by leaps and bounds.

Middle school also means new friends. Two and a half elementary schools feed into our middle school. The kids that he’s grown up with over the past 6 years know him and his quirks. They know they have to wait and be patient. They know he talks too much when he’s nervous, and that he will defer to talking about animals when he doesn’t know what else to say. They help him a lot, too. But the other 100+ new sixth graders don’t know him like that…and what happens then? I am not even going to let myself think about 7th and 8th graders. I just may faint.

I know it’s a right of passage. I know that we all have had to figure these things out..and that we have all had our share of failure and success. I just hope beyond hope that he is okay…and that we’ve given him enough tools to be successful.

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!

One Down, One to Go

Since my last post, Tate’s IEP meeting has been rescheduled twice. It is now next Wednesday. Jake’s IEP meeting was yesterday. 

We were under a time constraint, as most of the team had another meeting at 9:45. About 5 minutes into the IEP, the principal joined the fray. She has never been at an IEP meeting, so Hubz and I got a little uneasy….but she mostly sat and nodded and added a few comments here and there. It became clear to us that she just doesn’t understand special ed…or ADHD. At all. *sigh*

Overall, the meeting went well. We have a good plan in place for Jake. He is blessed with another fantastic teacher, who really understands the need for accommodations, modifications, and specialists and such. She is so helpful and had a plethora of ideas to help Jake succeed in school. His resource teacher is good, and is incredibly willing to work with the general education teacher to make sure that Jake isn’t missing out on a “typical” 4th grade experience. I absolutely love that the resource teacher is pushing into his classroom to help him (and a couple other students) more. I think that is huge for Jake.

The toughest part of the meeting, as always, is listening to the areas of weakness. That never, ever is easy. I will never, ever be comfortable with it. Hubz and I agreed with the statements made about Jake’s current areas of need, but it’s just not easy to hear about your child struggling. Especially when the number one struggle is anxiety. 

Anxiety. The anxiety beast runs rampant around here..and right now, it’s got it’s clutches on Jake. He is so debilitated by his anxiety. It is heartbreaking. We scheduled an appointment with his psychiatrist on Friday. I am trying to get a psychologist appointment, too. We brainstormed some ideas during our meeting to help him combat the beast while he’s at school. We have a few checklists that he can use in his folder, and we decided that he should get a daily “bounce break” in the social worker’s office. He can use her ball, her trampoline, or just sit and decompress…after math. Because math and numbers are another of his nemeses. (??) 

Overall, though, my fears about placement in a self-contained classroom were assuaged. They want him in the general education setting. We all believe that if we can get through the anxiety component, we can really watch him flourish. So, we are all in agreement that his placement in general ed/resource is right for him. 

School shouldn’t be this stressful for kids. It just shouldn’t. 

IEP Season is Upon Us

Next Wednesday we have Jake and Tate’s IEP meetings. Because so much of the teams are the same, we are doing back-to-back meetings. You read that correctly. Hubz and I get to sit through (at least) 2 hours of IEP awesomeness. What a fun morning, huh??? To be fair, the boys’ teams are great. We know they work really hard with the boys, and that they are doing what they can with the resources that they have. In many ways they are blessings for the boys. We cannot complain.

Tate is struggling with some behaviors, but he is doing okay at school. For once, I’m not at all that worried about his IEP meeting. He is in a good place. His placement is correct, and he is benefiting from the way his subject matter is being taught. He’s learning, and when he struggles, his teacher regroups and figures out a different way to present the material. In addition, he has a great team of ABA therapists, and we are working together this year across school and home therapy. I definitely see progress.

Jake, on the other hand, has me all up in arms. I have had a few exchanges with Jake’s teachers that has my stomach in knots. I get a feeling in my gut that we are going to be asked to put Jake in a self-contained classroom. I asked for a draft of his IEP before our meeting and was told that they would try to get it to me, but that it’s a “work in progress”, so they aren’t sure if I’ll be able to get it in time. (Knot begins.) Then the note went on to say that he requires almost one-to-one attention to transition from activities. (Knot tightens.) Then the note mentions a script that he relies upon all the time. Sigh.

I asked about his attention and focus. Both are not nearly where they were last year. I asked about anxiety. The teachers noted that his anxiety is really high, especially over social studies and science, which are large parts of the fourth and fifth grade curriculum. (Knot expands to size of entire stomach.) The note ended with the fact that he requires a lot of attention and that they cannot give him all of the attention he requires. And how they want to work with us to get him the help he needs to succeed. (Knots form in my shoulders and neck as I tense up.)

So…yeah. That’s where we’re at right now. I feel like I’m going to throw up. I shed a few tears in frustration. I also exercised…but that did nothing to help. I have to run out and refill Jake’s medication prescription, wait for the doctor to call me back, and start reading more of my executive functioning materials. The biggest issue here is that I know Jake needs help..and I just don’t know how to do it. Mom fail.

Wait a minute…

Last week we met with Tate’s team to discuss the results of the FBA (functional behavior analysis) that was done. Tate started the school year out fairly well, but had a marked increase in scripting and stimming behaviors, especially during the times that he is mainstreamed. Hubz and I were totally ok with the school district doing observations and data gathering. We were seeing similar behaviors at home during downtime. We had no longer signed the paperwork and his scripting decreased. Ironic.

The team had come up with a stimulus control for Tate’s scripting and stimming. It worked. If he participated and was able to get his school work done without scripting/stimming interfering with it, he got a few minutes of “stim-me time”. We were doing that at home, as well, and it seemed to help…during some parts of our day.

The behavior specialist at school was observing and tracking his behavior in his instructional class, in his specials, and at lunch. Tate is still only mainstreamed for specials–music, gym, library. He eats lunch with this mainstream class, and does parties with them, too. A different behavior emerged…during down time…or periods where the class was told to “wait”, Tate would start scripting. Or shouting. Or making his stimmy noise. Or, one that’s really noticeable, he would act like a drill sergeant and boss everyone, including teachers, around. Fabulous.

The antecedent for his behavior is completely related to having to wait. He just. can’t. do. it. Hubz and I totally got this. It made so much sense. Tate likes his routine and predictability. He likes when there is order and he knows what is going to come next. He can barely wait for a peer to answer a question in class. He will shout over the peer and give the peer the correct answer…because the anxiety produced by waiting for the peer to answer…and the anxiety that the peer will get the incorrect answer just is too much for Tate. So he’ll shout out answers. He’ll start scripting. He has made some of his stimmy noises to fill the time.

Looking at his behaviors at home, this rings true, as well. For instance, on Wednesdays, I often get the boys take-out. It’s from our local burger joint…and to Tate it’s ambrosia. The gooey grilled cheese. The crispy french fries. The savory fried cheese curds. The quenching lemonade. It’s.so.freakin’.yummy! He cannot wait for me to get my jacket off, put my purse away, and set the dinner on the table. Instead, he starts barking, and I mean BARKING orders. GET ME THAT GRILLED CHEESE–NOW! I NEED KETCHUP! DON’T GIVE COLE CHEESE CURDS. HURRY! STOP! WAAAHHHH! My head is spinning and I want to collapse from frustration.

Tate also bosses his brothers around–big time. But the bossing usually doesn’t occur unless he’s waiting. Waiting for his turn in the bathtub. COLE-WASH YOUR HAIR–NOW! NO PLAYING! PUT THAT SOAP DOWN! GET OUT OF THE TUB! JAKE, FLUSH THE POTTY! FLUSH THE POTTY, NOW! GIVE ME THAT TOWEL!

We had been dealing with the behaviors with the ABA-suggested process. Ignore the demands. Ask him to do it over the right way. Model the correct behavior and have him do it. Going over the process. But, try as he might, eventually it would all break down. I was frustrated for him. I was frustrated for us. I was frustrated for his poor brothers who will likely have PTSD about showering as they get older. *sigh*

On the upside, the ABA team is taking the same approach as the school. They are working on building his ability to wait gradually. ABA had already been doing it..but he wasn’t generalizing it. At school, and during therapy (and I think with us at home), they use cues. And motivation. At school they are using cards with objects he desires. Doc McStuffins. Fans. Team Umi-Zoomi. If he needs to wait, they will use their cue, “hang on”, and that will prompt him to choose a card to use to wait. Eventually phrases will be on the cards. “I sit and wait with a quiet body until my teacher comes to my desk.” For now, he can look at his cards with his favorite things. It is anticipated that this will help his brain leave the anxious state and calm down so he can wait.

Goals were written for his IEP. He will work towards waiting 20 seconds, quietly, until the end of this trimester. By the end of the school year, we are aiming for 30 seconds. By his IEP meeting in October, we’re hoping for 45 seconds. Ultimately, we’d like to get a minute. A minute is an incredibly looonggg period of time for a 6.5 year old boy. Even longer for a 6.5 year old boy with ADHD and anxiety. And autism. But we know he can do it. He is so amazing at taking coping skills and practicing them. He has learned SOOOO much. We’re hopeful that he can learn this, too.

Waiting is an important skill. No one likes to do it. It makes me antsy and anxious. And I’m neurotypical. I can’t imagine how magnified that must be for my boys who want to know EXACTLY what is coming next so that they can draw from their scripts/social stories/repertoire to act and react appropriately.

This all made me think about my own behavior…so many times I will tell my boys, “Wait a couple minutes, ok?”. I say this so often that Cole’s response to being asked to do a chore he doesn’t want to do is, “Couple minutes, ok?” I’m really bad. Maybe I need some ABA to help extinguish that one!! I know, now, thanks to the team at Tate’s school, that when I ask Tate to wait a couple of minutes, he really, truly cannot…not without some help. So I will make that a priority..and will hopefully help teach my son how to wait. It’s a skill that too many of us just don’t have in a society that favors immediate gratification.

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