Monday, June 23, 2014

Facing our Fears

We've all heard time and again that we need to face our fears. Everyone has fears, whether they want to admit it or not. I decided to search google for some words of inspiration about fears. Here's some good ones that I found:

 
Yes, we all know this. We have to face what we fear before we will ever get over them. They will be fears until we overcome them. Makes sense. Easier said than done.


 
Again, this is true. Our weaknesses can also be fears, and once we conquer them, we are stronger than we imagined. This next one caught my eye:
 
 




 



Very clever, wouldn't you say? Which one sounds better to you, running from your fears, or facing them? Obviously, facing them does. We don't want to be thought of as cowards, right? But what if our fears looked like this?


 
Now I'm pretty sure that little bird is deathly afraid of snakes. But look at her, facing her fear like a brave little champion. We know this would never happen--it goes against the laws of nature. Of course a bird will flee her prey, her biggest fear. But humans, they should be able to face any fear, right? They have the capacity to overcome any obstacle, as long as they give it their very best.
 
Now take that sentence and apply it to a child with autism, sensory issues, and anxiety, and what do you get? Something very similar to that little bird coming face to face with a deadly snake. Each child with special needs has different fears. And Julianna is no exception. Over her 10 years of life she has face a few fears, fears that have brought her to her breaking point, where she literally looked fear in the eye and conquered, fears that would not even be considered fears to most children. First, she learned to toilet train. And second, she learned to ride a two-wheeled bike. These two accomplishments were ones that for a long time, I had almost given up hope on. I thought given her special needs, she just wouldn't be able to do it. But she did, after much effort, pain, and courage. It has taught me that if I continue to push her past her breaking point, she will succeed.
 
However, there is one particular fear of hers that I have not forced her to face head on, until now:
 
 
 
Swimming. It's been on the back burner for years. She took lessons for the first time at around 5 years old, and we began to notice how much she hated getting water in her face, or her ears. We of course took her swimming many times before that, but never official lessons until that point. I began to see that the typical group swimming lesson was not going to work for her. Blake was the complete opposite, and loved the water.
 
 
So the next couple years, we continued to expose her to swimming when we could; at friends' houses, swimming pools, etc, but no progress was made. And then she turned 8 years old, and was to be baptized a member of our church, which she wanted to do, and we were very proud of her. But seeing her get baptized, and go fully under the water was a big testament to us how deeply rooted her fears of swimming were. It took her a long time to calm down, her body was shaking uncontrollably, and she was crying nonstop. It was then that I realized we needed to do something to help her overcome this fear.
 
Just a few months later, when I was homeschooling her through a charter, I learned that I could some of the money for her education on extra curricular activities. And I of course chose swimming lessons. Because we were getting free money to pay for the lessons, I decided to do private lessons at an indoor pool, once a week. I thought for sure this would solve the problem. I informed the swimming facility about her background, and they tried to find the right person to teach her. And I thought it went okay, for the most part. She made progress, in small ways. Working one on one with someone was much better than learning in a group, in a crowded pool. But I knew she was still scared.
 
When the charter money ran out, and school was out for the year, I liked the swimming lessons so much that we decided to continue them, but in a small group (we could not afford private!) We hoped that Blake would be in her class, but he was too advanced, so she had to be in a class with most kids half her age. We pressed forward, hoping that exposing her more often now, twice a week, would make the difference for her. It did in small ways, but I still felt like no one was really pushing her past her limit. I knew this was the only way she would learn to swim.

 
 
We tried to be happy with the little progress she made in doing swim lessons for many months, and thought about what we could do next summer. It would be more challenging, because our baby would be born in December. After his birth, I decided to join a local gym, and they had an indoor pool. So last summer, I took her and Blake to the pool in the evenings with me so I could help her learn to swim. I felt like no one else had been able to do it yet, so maybe it was supposed to be me. I made her a picture chart with the skills we would be working on, and she was very excited that I was going to be her swimming teacher. I began to see a little bit more progress. She would actually stay in the water floating on a noodle instead of gripping me. She would try to blow bubbles and do strokes. But she still would not go under the water to swim. Despite the many hours I spent with her last summer, we had not reached her goal. Her fears were still as strong as ever, and I had no idea what to do next.
 
Flash foward to a few months ago. I heard from a friend that a recent high school graduate from our church was offering private, one-hour swim lessons in her pool. I liked this idea a lot. And thankfully, this girl was willing to teach Julianna after doing a "trial" lesson with her. We decided that for each of the 8, 1-hour lessons, we would focus on one or two skills she needed to learn that would naturally progress into her learning to swim on her own. I know it sounds like a huge leap for her, but she's 10 now. I want to put this fear behind her. I am finally forcing her to face it, head on. I am tired of bringing her to pools where she just watches her friends swim, and sits on the side of the pool with me, or won't go past the shallow end. And the only reason I am doing this to her comes down to this:
 
I KNOW SHE CAN DO IT!
 
I knew she could learn to toilet train. I knew she could learn to ride a bike. These challenges did not come without many, many tears, but after the tears, the fear went away. And today was no different. This young lady spent almost 40 minutes trying to get Julianna to simply put her face in the water, the first step in the process. She used a kickboard, and told her to put touch her forehead to the board, over and over, and slowly lowered it into the water, until Julianna actually put her face in, just a little bit. I've never seen her do that before, even that little bit, on her own. But that wasn't enough. I knew she could do more, and her swim teacher does, too. I told Julianna, do you want me to put your face in the water, or your teacher? And she said, my teacher. So this young lady counted to three, and tried pushing Julianna's face in the water, but Julianna became so rigid and tense that her neck would not move. So she took her to the deeper end and she let Julianna fall into the water, almost underneath, and lifted her right back out again. Julianna was shaking, crying, and scared, but we both talked to her, and told her how proud we were that she let her whole face touch the water. It was hard for me to see her like this, because I know how scared she really was, but I had to tell myself that the only way she will learn to swim is by facing the biggest fear of her life! She's going to be scared, until she's not anymore.
 
I don't know what the next two weeks of swimming lessons holds for Julianna, but I will be sure to keep you updated. What I do know is I now have a swim teacher who is just as determined as me to get Julianna to swim. And what I do know is that this might be even worse than potty training was, seeing her go through this. But in the end, we will all come out victorious, or at least a lot closer. Why am I making Julianna face her biggest fear of her life? Not because I'm mean, or uncaring, or insensitive. One answer, and I will say it again:
 
I KNOW SHE CAN DO IT!
 




Wednesday, June 18, 2014

An Honest Post: Social Situations

Today Julianna had a pool party to attend with the activity days group, girls ages 8-11. For any girl this age, a pool party sounds like a great idea on a hot summer day. But there were two things that made this event difficult for my girl:

1. She cannot swim, and is scared to go in the water, especially in large groups.
2. She is on this GFCF diet, and I was concerned that she might eat something she shouldn't.

Oh, and if you want to add a third one, I developed a major migraine for the first time in my life, so my plan to stay there with her the whole 2 hours went out the window. I knew that she wouldn't be able to go with me this time. And that made me nervous, given the above two reasons.

So I called one of her leaders, and explained things to her. She can't swim. She's on a special diet. No problem, we can watch her. This wonderful woman made me feel so much better about bringing her there, and leaving her without my help.

But in general, if I am to be completely honest, I really don't want to be there when she is in a social type situation. And I have two reasons for that, too:

1. I don't want her to stay by my side, and become too dependent on me. I want her to go out of her comfort zone, and if I'm there, she doesn't have to do that.
2. I hate, HATE seeing her around a group of kids when they are ignoring her at times, when they don't talk to her, when they assume she doesn't know how to play, when she is left out.

Now this doesn't always happen. Most of the time kids are really nice to her, as I have mentioned before with her school friends. But the older she gets, the more different she becomes, and it's just too hard for me to see that. It's too hard for me to see how she can't go up to a group of girls and know how to socialize. And I don't want to be the one forcing my way in there with her all the time. I wish all kids had that innate sense that a child who is different should never be left out, that the girl in the corner or on the side of the pool, though she might not know how to play or talk in a group, still cares about being included, and that those kids would notice that, and that they would come over to her, and talk to her, and make her feel important, just like the other kids feel. I usually end up resenting the children who don't even make an effort to talk to her or include her (but I get over it). I know that sounds horrible, but it's true. That's exactly why I don't want to be there to see it. I don't want to know who was ignoring her. I would rather assume everything went just fine. This is an honest post. And right now, I am crying just writing about it.

Now I understand that girls at her age should not be expected to do these things. I know they would rather play with other girls that they can have fun with. I guess what I am wondering is, how can this be improved, for girls like Julianna? What can parents do to educate their kids about children with differences? How can we make sure that kids like Julianna don't feel left out? How can I help Julianna learn how to socialize better, because she is approaching pre-teen years, and pretty soon, socializing is going to be the most important thing that friends do? Just thinking about this makes me so scared.

I am in no way placing blame on parents or kids that were at the party today...if you are reading this, you know who you are, and I love you dearly. And like I said, I wasn't there, so I don't really know if she was included or not. But I'm using this party as an example to explain what I go through every time she goes to some type of party or event. This is how I feel, honestly. I know what it's like to feel left out and ignored. I think everyone goes through this at some point in their childhood/adolescence. I don't know how much can change, because kids will continue to grow up, and kids with differences will do the best they can to keep up. And if they can't, the most important thing is for them to know they have someone looking out for them, caring about their needs and feelings, too. Julianna wants to be included and loved and have friends who love her for who she is, just like anyone else. I'm not saying she doesn't have friends like this, because she does. I just want people to know a little bit more what I feel, and what Julianna feels.

Having a special needs child never gets easier. Every stage presents new challenges to overcome, just as it does raising all children. Today I was telling my husband that I was considering not taking her to the party, even though she was so excited to go. I told him it will be too hard, because I have a headache, which means I can't be there, and then she can't swim, and then her new diet. But he answered me and said, "It doesn't matter. What is important is that she is there." And he is right. I can't let anything keep me from her being there. Maybe no one else will remember she was sometimes, but at least she will know she was there. If she wants to be there, I will take her. And hopefully, each time she is growing in some small way.

Monday, June 16, 2014

Julianna, Part 11: I Try Homeschool

Julianna's situation at school had reached a point where I had no idea what to do. Her wonderful first grade class where she made so much progress was taken away during the summer break, with no warning to parents or changing of IEPs, all because they felt like trying "full inclusion" was a good thing. So for kids like Julianna, who are higher functioning, they had no choice but to place her in a regular classroom, with "some support." All the lower functioning kids were placed in special education classes. Well, for Julianna, this just didn't work. She did not want to be with the lower functioning kids because she worried about their spontaneous behaviors, and this created more anxiety for her. But the regular classroom didn't work either, because of the large size and feeling like she was on her own. I was told by the teacher that she was just "there," not really participating or looking comfortable at all to be there.

Hearing this just broke my heart, almost to where I didn't even want to send her to school. I knew that her old class wasn't an option anymore, unless I hired a lawyer and really fought the school district. I so wished I could do this, but I didn't feel like that was the right answer. The more I observed her in the classroom, the more I realized how much one on one support she really needed to learn and focus. And I don't even remember where the idea came from, or how it popped into my head, but one day I woke up and realized, "I need to homeschool her."

It made so much sense to me, even though I knew nothing about homeschool. For the past few years, I was working as a substitute teacher a few days a week, and loved doing it. I love teaching. Those of you that know me well, this is something that is a passion of mine, and during this time period, I came very close to going for my special education credential. But something kept holding me back, and I didn't know why. Once I had the realization that I needed to homeschool Julianna, I thought maybe that was why I never pursued it, and that I was supposed to be able to give all my time and attention to her so she could learn.

So I started looking into the possibility of homeschooling, and heard about some local charter schools that offered homeschool programs. I of course had to tell them about Julianna, and all of her history, and it seemed like once I did that, most charters told me there was no way they could allow me to homeschool her, given the level of support she is supposed to receive in school, though they could match the extra services like OT and speech, because by law they were required to provide it just like a public school. The real hang-up was the way her IEP was written, showing she received special education support at school. I was not a special education teacher, just a mom who wanted to do what was right for my child. Now I was starting to wish I had gone to get that degree...

But after much searching, I was able to find a school that was willing to work with me. They told me exactly how to word the IEP so that they could allow her to be assigned to a homeschool program. This meant I had to hold a few meetings with Julianna's current school to write the IEP correctly so it would transfer over to the homeschool charter. After some back and forth, it was approved by the charter school right before the winter break, 2011, just when I wanted to have it done. This gave me 3 weeks during the break to get everything ready for homeschool.

It was scary, I have to admit, saying goodbye to her elementary school, and having no idea what to expect on this new journey with her. But what kept me strong was knowing that I am Julianna's mom, and I would never leave her hanging. I would be there, giving her undivided attention. And the charter offered great support in curriculum, and even some small group classes she could attend for social time, as well as providing her speech and OT. She was also still receiving her ABA therapy during this time, which was going really well. We were also able to find a great respite worker after many months of failed attempts. Things were all falling into place, and though I was a little nervous, I was mostly excited to be "Julianna's teacher." I knew I had the skills and knowledge to take on this role.

So the winter break ended, and Blake returned to kindergarten, and during his time at school, about 4 hours, I used this time to work with her. I came up with a completely personalized schedule, something no school teacher ever could have implemented. We worked on math and reading using a timer so she would know when it was time to stop. She did fine motor and gross motor games with me. We did sensory play activities. We worked a lot on her handwriting. We had lots of fun! I used a little easel chalkboard, and we talked about the parts of a story, and I was able to come up with fun songs and rhymes to help her remember things. I could tell she was learning and being focused for the majority of the time. I knew that this was what I was supposed to do as her mom.

Until I got a big surprise that would turn everything upside down and make this fun homeschool almost impossible....


 

I'm back, continuing the story on this post...
 
So about 4 months into my wonderful homeschool experience, I was feeling so lucky that I could be home with Julianna and work one on one with her. She was finally getting the attention she needed to learn, and I really felt like this set up was perfect. Though some days were harder than others, I knew this was what she was supposed to do with me, at that time. She seemed happier and less anxious, and was making progress in her learning again.
 
Now my husband and I had been on the fence for many years about having more children. We knew we already had our hands full, and felt perfectly fine just having two, a boy and a girl. But we felt like maybe there might be one more child for us in our future, we just didn't know how soon. On April 1st, 2012, I took a pregnancy test. Yes, on April Fools' day. One day before I turned 30. And even more interesting about this day...9 years prior to that, on April Fools' Day, I took a pregnancy test, and discovered I was pregnant with Julianna. So I thought it would be really funny if the same thing happened again. Well, it did. I was pregnant. And though I was very excited for a new child to join our family, I didn't know what that meant for my perfect little homeschool with Julianna.
 
So Julianna and I went along as best we could, and the rest of the school year for her was during my horrible morning sickness phase. I really tried to be a good teacher to her, but it just wasn't working out the way I planned. I knew I wasn't giving her the best I could give, so as the year came to an end, I called the school back up, and asked what kind of special education classes would be available next school year. After her horrible experience alone in a regular classroom, I figured this was our only option. I took her to visit some classes, and though I wasn't really pleased with any of them, I knew that one would just have to work for her, because a pregnant homeschool mom and then a newborn just wasn't going to work. Julianna needed my full, undivided attention for this to be a success.
 
Over the summer, I tried to convince her that being in one of these classes would be better than the previous class, but the problem was, because the school district dissolved the resource class for higher functioning kids, it only left the lower functioning classes. All of those higher kids were spread out in regular classrooms. Julianna just didn't seem to fit anywhere, and I wasn't sure what to do. One thing I did know, from doing homeschool with her, was that she learned better with someone right along side her, helping her focus and stay engaged. I knew that very few kids had a one to one aide in school, and I had no idea how to get one. So when school started that fall, I had a new mission: to get Julianna a one to one aide....like I've said before, the battle never ends.
 
 
Julianna on her first day of 3rd grade, fall of 2012

Thursday, June 12, 2014

Setting up a GFCF shared kitchen

This week I have been busy setting up the kitchen to make sure none of the gluten-containing foods contaminate Julianna's gluten free ones. I found a great pin that explained how to do it, and the more I read, the more overwhelmed I became. She talked about using separate sponges or scrubbers for dishes, separate hand towels to dry with, and the biggest one that I knew I wouldn't be able to do was to put all gluten foods in one corner, and make sure you only prep gluten foods in one specific area, and then gluten free ones would be everywhere else. I felt like this would be impossible to do with my family. Making sure that they only place gluten foods on one area all the time was just a huge job. So I kind of personalized my kitchen to what I thought would work for Julianna:

I first cleared out one cupboard large enough to hold her GF cereals, snacks, and baking supplies, so it would not be contaminated by gluten foods.



I then cleared out the drawer and cabinet below for her own silverware drawer (because I figured others would be touching and dropping crumbs into the family silverware drawer) and her own dishes and baking supplies (again, because I didn't want fingers or crumbs contaminating the things she was putting in her mouth.) I even found a great online deal for a whole new baking set, and then for her own dishes, I used glass Corelle bowls and plates that I already had, and some glass mugs for now. No more plastic, since plastic is porous (as my wonderful respite worker pointed out) and might trap some of the gluten. I feel very OCD doing this, but I figured if I'm going to do this diet for Julianna, I am going to do it 100%! I just went to the dollar store and got her a silverware tray and some new silverware. Nothing fancy.

 
 
 
I made sure to label the area GFCF so the family knows not to touch it or prepare food on it. I told Julianna that she has to get her cereal in the morning in this area, and her snacks, too, and no where else in the kitchen. The great thing about this is she is old enough to understand, and listens. She knows all about the diet, and her respite worker brough some cereals that were GF, but one contained soy, which we have also removed. I told her she couldn't have soy. The next day, our respite worker brought a different GF cereal, and Julianna asked her, "does it have soy in it?" She gets it. The other thing that was really cute...when I was all done getting her area ready, she said, "Mommy, it's like I have my own little kitchen!" Here's what it looks like.
 

 
She has her own fruit bowl, her own cooking supplies (which she is really excited about), and I did do the hand towel, and gave her a hook to hang it on, away from the other hand towels. Success!
 
The other thing I did was get her a new sponge and scrubber, and dish drainer for her own dishes to keep them separate from the gluten foods that would be in the sink. I told her she needs to wash all her dishes when she is done and place them there. Again, she is old enough to do this, so it is working just great. She did all these dishes by herself!
 
 
 
The last project to tackle was the fridge, and this was by far the hardest one. I HATE cleaning the fridge, but again, I will do it because at this point, it is absolutely necessary. I had to get all those little gluten crumbs out of there! The pin I was using recommended either getting a separate fridge (not going to happen right now) or placing all GFCF foods on the top shelf, so no other crumbs can drop down below. So I began taking out the shelves in the fridge, and noticed that there were little crumbs in the grooves. I had no choice but to take all the shelves apart, and clean all the little crumbs out that get in those crevices. It took me a VERY long time, but I am confident that nothing will contaminate her shelf in the fridge, and hey, my fridge is a clean as it was when I bought it almost 8 years ago!
 
 
So there you go...my kitchen is ready to be completely GFCF now! I feel so much better. I just hope we can stick to this system and that it will show results. The diet takes at least 6 months before you really see a lot of changes, but I am going to stick with it! I have already noticed subtle changes in her mood, and best of all, she really feels special knowing she is on a special diet and has her own "kitchen!"




Sunday, June 8, 2014

Julianna, Part 10: More School Nightmares

After securing services from the regional center, I felt like Julianna's future was brighter than ever. Even though she did not receive a diagnosis of autism, her case worker, after talking with me about what I thought she needed, went into the autism team and fought for Julianna to get ABA. Typically, only children with autism get this service, but my amazing case worker was able to convice the team that Julianna needed it, too. Soon we would be meeting with the ABA provider and getting it started during the upcoming summer, 2011. I also found out she would be receiving 30 hours a month of respite care, which is like a childcare service where someone comes to play with your child to give you "respite" or relief. After 7 1/2 years of battling schools and the regional center, respite was exactly what I needed!

Julianna was nearing the end of her 1st grade year in an academic SDC class, grades 1-5, and was mainstreamed into the regular classroom for about 50% of the day. The progress she made during this school year was astonishing. She was catching on to her math, her reading was soaring, and her handwriting improved dramatically. She was also starting to become a little more social. At the end of this school year, we had an IEP meeting to make sure things were in place for next year. I was told that nothing would be changing, and that she would have the exact set up as this year. Things could not be better. School was figured out for the time being, and now regional center would be helping, which means our home situation would improve.

The ABA therapy started in July of that summer, and Julianna loved the extra one on one time with her therapist. We worked on lots of things and made goals in many areas, like zippering a jacket, tying shoes, brushing teeth, buttoning pants and shirts, asking questions more appropriately, the list went on and on. I began to see how behind she was in life skills, and realized that I did too much for her, because teaching her simple tasks around the home was just too challenging. But working with these therapists, I learned how to write out the steps of a task, and how to teach it appropriately. The person over her case also met with me regularly to talk about how things were going, and revise and write any goals that were needed. This ABA therapy was so eye-opening to me, and exactly what Julianna needed to progress. I only wished she had had it back when she was three, the first time we applied for services, but there was no changing the past, so we had to work with her where she was now, and help her catch up.

During that summer, she also saw a neurologist. It had been a while since she had seen one, and I wanted to ask him specifically about her extreme tantrums and self-injurious behaviors that didn't seem to improve. After talking with him, he suggested using medication. I had never done it before, and was always very reluctant, but he pointed out that using medication along with therapy really helps to see progress. He gave me some suggestions of what we could try, and I did some research. It took a long time for us to decide to do it, over a month, but Joel and I finally said it was worth a try, and she began a small dose of medication shortly before she started 2nd grade. I won't give the name of the medication, because I don't want anyone to assume that they would have the same experience, but starting this was a huge leap of faith for us, but something that we also felt was necessary at the time to control her behaviors that were becoming worse.

So the summer was coming to an end, and about a week before, I felt like I should email the principal and special education director (the lovely Mrs. Fox was still holding the position) and her teacher to make sure things were still in place. Blake was also starting kindergarten that year, so it was an exciting time for him as well. Anyway, I got an email back, saying that there had been some changes over the summer, that Mrs. Fox had decided that they wanted to change the entire SDC program by doing what was called "full inclusion." Without notifying the parents, without changing IEPs, without any word at all, this change was made, and it would be affecting all students like Julianna (higher functioning). Basically, they decided to get rid of the wonderful academic SDC class she had made so much progress in, and place her in a regular 2nd grade classroom with some support during the day. So she would be going from a very small class of about 10, to a large class of 30 or more. None of the general education teachers were certified in special education, so to "solve" this problem, I was told by one of my friends who is a teacher in the district, that they had one training session over the summer to get them ready to teach these SDC students. Most teachers that I knew were NOT happy with this change, and did not see how it would work out. But this is what Mrs. Fox thought was best for the students, and even felt like they were doing something revolutionary, in a way. I was assured that it would be a trial period of a year, and if it didn't seem to work, they would go back to the old model (or so they said).

This created all kinds of problems. First of all, Julianna does not know how to walk to her line in the morning. And no one was there to help her before school started. So I would bring Blake to his kindergarten class, and then wait with Julianna for the bell to ring before she would go to class. Her teacher was very young, and had a large class. I observed about once a week to see how it was going for Julianna. From what I saw, it was not good at all. She would sit at her desk, with her head down, and seemed like she was scared to death. Then, to make matters worse, only three weeks into the school year, her teacher had to suddenly move out of state, so until they could find a permanent replacement, there was a substitute teacher. I could tell things were going downhill very fast for her. Handwriting was getting worse, schoolwork was suffering, and though she was on medication and receiving therapy, her behaviors were not improving at all. Something had to change, and from what I had heard, there was no way I would get that old class back for her. The small academic SDC class was gone, and there was nothing I could do. I had to figure out how Julianna could learn best, and my solution was something I had never thought I would consider, and what I was scared to death of trying
....

Tuesday, June 3, 2014

IEP, End of 3rd Grade

Today could not have been a more perfect day. It started with a nice walk with a good friend, then getting ready for the IEP, putting Nathan down for a nap, and having another good friend come over to my house while Nathan napped (one of my visiting teachers). I can now say that my day was made even better by attending the IEP meeting today. It was probably one of the easiest, shortest, least tense meetings I've been to, especially one where the special education director attends.

I've mentioned in the past that the previous sped director was really difficult to work with. She only cared about the bottom line, and had no experience in sped, so she often made her decisions based on whether she thought the district should pay for them, not on whether the child needed it. Because I spent YEARS going to meetings like this, I am still getting used to the idea that my ideas are heard and most often accepted and written into the IEP. But today, because I didn't know anything about the new director, I was nervous once again. I knew he was aware of my list of requests, and because I hadn't heard anything about what he thought of them, everything was up in the air.

But to my surprise, the new director was easy going, accommodating, and generous. The meeting was pretty much directed by me, while I read the list of requests. First topic: allow Julianna to leave school at 2 pm on Mondays and Wednesdays next year in order to do her ABA therapy at home before dinnertime. This means she will miss 2 1/2 hours of school a week. His answer to that: yes, let's do a 90-day trial period and revisit how the schedule is working. Usually, to request something like this, it opens up a heated debate, but not today, and in fact, once that topic was done, I looked around the room and remarked, "Wow! That was easy!" They all kind of laughed at that.

Next topic: Provide a personal bus home from school on Mondays and Wednesdays (the therapy days.) His answer: yes, we can do that. Again, I was shocked, and trying to contain my excitement.

Next topic: Receive occupational therapy again at school to avoid me taking her 45 min one way for therapy through our health insurance. His answer: yes, we will have the OT assess her at the beginning of the school year and get that going again. Okay, I was on a roll here. Let's try another one...

Next topic: Allow Julianna to be pulled out of the general classroom Mon-Thurs to the resource room for extra help in math with the resource teacher and her 1:1 aide. His answer: How much time do you think she needs? How much time??? Did he really ask me that? Well, how about 45 minutes? Done. She will now get more help in math, which she desperately needs. Things were going so well that I asked for the one I thought would be next to impossible...

Next topic: Provide speech therapy once a week during the summer break to help her in her stuttering. His answer: We can do that, during ESY (Extended School Year.) So now she will be getting 5 sessions of speech during the summer break.

Really, this IEP seemed like it was out of a dream. I am so glad I was able to sit around the table with people who really care about Julianna and want her to succeed. Now I know what a great person the new sped director is and I will never again be nervous to ask for something that I think Julianna needs. This is how it should be: parents know their child best, and when the parent comes into a meeting with good ideas, those ideas should be given careful consideration and approval when appropriate. I am so excited for Julianna's next school year!! It is going to be her best ever.

Another neat thing that happened at this meeting was when we got into a discussion about her behavior at home. Something that has continued to baffle her teachers is when I tell them how much she tantrums, screams, and bites her hands at home. She is so well-behaved at school that they can't even imagine her doing this. As we were discussing this, I had the realization that school was not causing her feel anxious at all, it was the home setting that was. It was her brother who sometimes ignores her and doesn't want to answer all her little questions. Julianna craves one on one attention, and when she doesn't get it, she will tantrum. At school, there is structure, and she has her personal aide with her all day to talk to and help her, and she has her cute little friends that love to play with her. But then she comes home, and when her brother doesn't want to play with her, or when Joel or I are too busy to spend time with her, she doesn't know what to do with her time. And this often results in a major tantrum. School is not creating anxiety for her at all--I need to look at how I can improve the home setting for her.

Looking toward the summer, I am more hopeful than I have been in a long time. She will be starting the ABA therapy, and we can address the home issues even more than we did the first time, and really get to the root of her stress and anxiety, and hopefully fix it. This, along with her new psychiatrist, psychologist (whom she will see next week), and the GFCF diet, will be a good help for her to improve in many areas.

Sunday, June 1, 2014

Adventures in GFCF cooking

So this past Thursday night, I got out all my cookbooks and recipes, looked through my pinterest and facebook posts, and set out to make a monthly menu for dinners and treats that are gluten-free, casein-free. I also wanted to make sure they were kid-friendly and husband-friendly. After a few hours, I came up with a great meal plan that I can use for each month, and even wrote out a shopping list for each week that included all the items I need to purchase for the meals. Now I don't ever have to write another shopping list or meal plan (unless there are some meals we end up not liking, but I don't think we will, because they all look really good!) I felt very proud of myself for doing this and it made me even more excited to try all these fun recipes.

Yesterday, while Nathan napped, I set to work on a few of them: GFCF sandwich bread, No Bake Energy Bites, and Homemade Rice Milk. Julianna helped me make the bread, and after that, she was done. Now I must tell you all right now...I am NOT a breadmaker. I have never successfully made a loaf of bread in my life, so I have avoided it all these years. But this recipe looked really easy, and I was so excited when I actually saw my bread rising on the stove! My bread was RISING! I couldn't believe it. But then it rose so much that it looked like it was overflowing.

 
Yep, my stove is not perfectly clean. I have three kids. I am not attempting to be a cool mommy food blogger here. I am just proud that I made bread that actually rose!
 
 
 
And since I am not a breadmaker, I decided it would be a good idea to split the dough into two breadpans and continue to let it rise on the warm stove. So I did that, and I got worried, because it wasn't rising that much anymore, but after an hour, I hoped that maybe it would still cook okay. And...it did, but it was not pretty anymore, and only about 4 inches thick, but once it cooled, Julianna ATE IT! She ate GFCF bread that I made! (Today she wouldn't eat it, but that's another story...)
 
 
So while my bread was rising, I went on to the next recipe: No Bake Energy Bites. These sounded SOO good: peanut butter, honey, rice krispies, coconut flakes, cinnamon, and marshmallows all mixed together and then put in the fridge until they could be formed into bites. Here is the final product:
 
 
 
 
 
The recipe called for mini chocolate chips, but I could not find any that were dairy free, so I went with marshmallows. It worked well after giving them a little more time in the fridge to harden. And they are delicious! Fun to make, too. This is a double recipe.
 
 
And the last thing I made was probably the easiest: Homemade Rice Milk. You literally boil brown rice, let it cool, add 1 cup of cooked rice to 4 cups of water and a tablespoon of sugar in a blender and blend for 3 minutes. The final product is rice milk, and the price is a lot cheaper than buying it! Now, Julianna does not like rice milk in her cereal, but for cooking I thought it would be better to use rice milk when milk was called for to save some extra money. And since the process was so easy, I will definitely be doing this again! The cool thing is, now if we ever run out of milk and for whatever reason can't get to a store, I know how to make milk with rice. I guess if we were really desperate, we would drink it. I tried it, and it wasn't too bad.
 
 
 
This made about 1/2 gallon of rice milk.
 
 
 
So my first Saturday was mostly a success! I will keep working on the bread until it's good enough to make her toast and sandwiches with. My kids kept asking me why I was cooking so much. I guess they're not used to me doing this. And it's true...lately I have been lacking in the cooking area and allow myself to think I am too busy to make good things for my family. But in reality, I am not, and just need to put in a little more effort. Now that I have my monthly plan with 4 new recipes each week, enough to have leftovers the other nights, and some good desserts planned as well, I am looking forward to cooking again! And I will try to include the kids more in the process.
 
If anyone is interested in the recipes, let me know! You can also look at my pinterest page or GFCF page at the top of my blog with a link to some, too.