Thursday, October 30, 2014

The fight is over

Well, sometimes I have to admit defeat to the school after starting a fight, and I don't like it! Turns out after calling a person who really knows her stuff (she is over all the county as far as IEP laws go and is a parent advocate), I was told that pulling a child out early for ABA therapy is not allowed no matter how you want to write it in. She said the state is cracking down on IEPs similar to mine, and there was a training recently about how students should never miss school for therapy, etc. She apologized, and wished she could tell me differently, but unfortunately not this time. And she was really surprised that I'd gotten the district to agree to let her miss school, even for a trial period!

So I had to do the thing I dread most, and that is admitting to her resource teacher that I was wrong, that we don't need to have an IEP, that Julianna will be attending school all day starting next week. I really hated writing that email, and I even waited a couple days before I did.

Now you might be wondering what we are going to do about her therapy? Well, I have worked it out with her ABA providers for them to come from 3:30 to 5, Monday through Thursday, and then Fridays will be 2-5 like they were before (Fridays are always minimum days). They agreed to allow her less than the minimum required time of 2 hours, which is very generous. And we still get to end at 5, which is very important to me. I don't want our ABA to cut into family time or dinner time, or free play time every day after school. I also like the idea of someone coming every day after school, because maybe it will seem more effective that way. Plus it might force me to keep my house clean EVERY day, which is good!

I am also very happy that I don't have to fight something right now. I was starting to work up the energy and motivation, to believe that I could win something again. But honestly, when that woman told me there was no point in fighting it, I felt so much better. The last thing I want to do right now is fight the school district.

Something else I mentioned at the IEP last week when they first told me she could no longer go home early, even knowing how well it's helping her academically, was that this was why many parents home school their children now, especially ones with special needs, because the demands on your time to accommodate these children are often very high. They all nodded in agreement. I have done homeschool before, for just 6 short months, right before I discovered I was pregnant with Nathan. And I knew I really couldn't do my very best to teach Julianna if I had a newborn, so I placed her back in school. Looking back, I know I was inspired to make that decision, because Nathan's demands for my time were more than I ever imagined they would be. But looking forward, I know that homeschool is definitely something in Julianna's future again, I'm just not sure when.

What I do know is that every time I am faced with a problem from an IEP meeting, and I have to figure out a way to solve it, no matter what, I am learning the ins and outs of special education law. I really should just take a class! I hope that all this knowledge will serve me well for something down the road, or will serve someone who might happen to read this. Until the next IEP!

Friday, October 24, 2014

Another fight to the death

Oh, school. School has been one big rollercoaster for Julianna. Just when I think things are perfect, settled, working wonderfully, is when everything comes crashing down. I don't understand why it always ends up that way, but I am on the verge of tears right now, thinking about what I have to face in the next week to get things fixed.

When you have a child with special needs, you will most likely write up an IEP (Individualized Education Plan) with your school district. I have been to more IEPs than I care to admit over the many years Julianna has been in school. And the last year or so, they've been just fine. But then sometimes, you go to an IEP, and a big gigantic grenade is thrown your way, something you weren't even told was on the agenda, and something that can turn everything you've fought for upside down. This is the nature of the IEP meeting, and to be blunt, it SUCKS! Yes, I said it, and I usually never do, but it's true.

Today was supposed to be an easy IEP, where we would discuss Julianna getting OT (occupational therapy) again, and also being evaluated for APE (adaptive PE). This was the agenda, and I did not know anything about the third item until suddenly they were saying that the trial period for allowing Julianna to miss school for 90 minutes on Monday and Wednesday in order to do therapy at home from 2-5 was now over, and that if she missed school starting in November, she would now be marked as unexcused. What? This is what people do after a trial period? After we had just talked about how she was doing better than she's ever done in school, in large part due to her therapy. How she's getting 3's on her report card now. 3's!!! She's never gotten a 3! That means she's meeting basic requirements for her grade level!! This is almost unimaginable to me!! But yesterday, as I sat at her parent teacher conference with her great teacher and heard about how great she is doing socially AND academically, and I saw those 3's on the report card, I was overcome with gratitude. Finally, I had found a great system for her that included just enough school and therapy. It was working. We were seeing results!

So then to go to an IEP meeting the very next day and hear that all that would be taken away, EVEN THOUGH IT'S WORKING, is complete nonsense. We all sat there and agreed that this therapy, though she is missing some school for it, is helping her in school. But of course, they are bound by law, and have to make sure all students attend the full day, blah blah blah. So they made it seem like their hands were tied. I asked if she could get some of the ABA therapy at school, so she wouldn't have to be there, and they said that type of therapy is only offered to students who have problem behaviors at school, and then the school district contracts with ABA providers to get it arranged. I asked if we could just write into her IEP that the therapy at home was part of her education, and they said no. They gave me no options, other than to just do the three hours of therapy after school. But I told them there's no way I'm going to force my daughter to go to school for 6 1/2 hours and then do another 3 hours of therapy, and let that cut into our family time and dinner time. So we were stuck. And I was so flustered, that I didn't know what to do. I signed the IEP. I told them I would try to figure something out. And then I came home, and went, great, what did I just agree to? What JUST HAPPENED? I talked to Joel, and he said we need to fight this. We don't have to be flexible for them just because they want their money. And WHY DID I SIGN THAT IEP?

Since then I've been on the phone with just about everyone I can think of. Advocates, special ed reps, I even called back the person from the district who was at the meeting, and told her I wasn't prepared to discuss this topic, that I didn't even know she'd be there, and that I don't want to change anything. I told her I wished I hadn't signed the IEP. She seemed apologetic, and told me that she thought I knew that that was the purpose of the meeting. I told her no, sorry, I had no idea. So she said we do need to meet again to discuss it. I started getting emotional, telling her that she's never gotten a 3 on her report card before, and that's in large part because of how wonderful this therapy/school system is working. She said we would try to work it out. But honestly, I don't think they're going to suddenly feel like they can allow her to miss that 3 hours of school a week. It's going to be a fight, another long fight.

I just talked to an advocate who is a relative of one of my friends. I told her the situation, and she said that I need to write a letter, request another meeting, that this meeting wasn't valid because the person from the district was not listed on the notice of action for the IEP as attending, and that the best solution would be to force the district into contracting with the ABA agency we are using and allow Julianna to be pulled out of the classroom for therapy there. If they have to keep her the full amount of hours, then they have to be flexible, too. I like this idea, and I hope they will go for it.

So I'm just really tired now. I've been on the phone for the last two hours, and poor Nathan got put in his crib just so I could make these phone calls for my daughter. It's okay, he ended up falling asleep. This is my life sometimes, and there's not much I can do. I have to reach deep down and find that fighting spirit that I still have, and get this fixed. Wish me luck!

Tuesday, October 21, 2014

Crazy weeks

Some weeks are pretty laid doctor appointments, no therapy, no anything, except the usual errands and responsibilities. And then some weeks are the complete opposite, like this week. Those weeks where all you can do to get through is dream about Sunday, and look forward to when you don't have to rush around everywhere!

Today was a non-stop day. Kids off to school, get ready to take Nathan to speech therapy (30 min drive), run into Best Buy right before to trade an SD card that was the wrong size for our new video camera, rush over to therapy, run to Sam's Club to get a few things, deposit checks at the bank, come home, put Nathan down for a nap, clean the kitchen and the house so it's not messy later, wake up Nathan, get the kids from school, go straight to Julianna's psychologist appointment with the kids, rush home to get dinner ready for the missionaries coming over, put Nathan to bed, make phone calls/texts for another thing I'm doing, put older kids to bed, relax, finally. Days like this I wonder how I even survived! I don't like to be super busy, but sometimes it just all happens on one day, and I can't change it. Unfortunately, this entire week has almost all non-stop days, and I'm not happy about it!

That psychologist appointment, however, was the highlight of the day. Her wonderful psychologist has been helping me with the 1, 2, 3 Magic, and told me that if Julianna can reach the goal of 21 days of no hand biting, she would throw her a little party. So that's what we did. We brought cupcakes, and she made a special certificate just for her, and she made it fun, and we did hip, hip hurrays, and clapped and cheered, and the look on Julianna's face was priceless. We wanted to make sure she knew what a big deal it was for her to accomplish this goal, a goal that just a few months ago, I thought would be impossible. If it weren't for this new psychologist, we would not be at this new place for our family.

Here she is blowing the candles on her cupcakes, and holding up her certificate. After that, she got out some coloring books, games, and puzzles, and we all sat with her (Joel met us there from work) and played together as a family with the woman who helped us reach a huge milestone. It was a great moment, something I will never forget. I am so very proud of what Julianna has done in the past few months, and I have a new hope for the future with her.
In other exciting news, I found out from Nathan's early start teacher that instead of her coming once a week for an hour to our home, Nathan can attend an early start class of 18 mo - 3 year olds, with a 1:3 teacher/student ratio, at the same place Julianna went to preschool many years ago! As I've mentioned before, I LOVED her preschool, so if Nathan has the opportunity to go to a class like this, I just might jump on it! I'm not sure how many days a week it will be, but it's 8 am -11:30, and he gets to eat lunch, too. So next month could be something new for my little guy, and a lot more driving for me!
Even though I despise the busyness, I keep going, because it's all for my kids. They need me during these years, and depend on me for a lot. I feel so fortunate that I can be there for them, and be there for all these moments that mean so much to our family. So yes, we are busy, but we are also doing an important work. Family is the best!

Wednesday, October 8, 2014

The Cure for Stuttering?

So we are on day 16 of no biting (although the weekend brought a few close calls, which really could have broken her track record, but I am learning to look at each situation now that she doesn't do it anymore, and see what is triggering it) so I will not count the little tantrums over the weekend. I can't even believe we've made it this far. But there has been another development in this beautiful, unique girl of ours that has also been a struggle, and that is stuttering.

Out of nowhere, around the beginning of this year, I want to say, she began stuttering. A lot. She would stutter so much that she would even tantrum over not being able to get her words out. It has been very challenging for the entire family. It has tested my patience to no end. It literally wears Julianna out, just to be able to speak. We have talked to her speech therapist at school, and she's noticed it, and they are working on it. I even thought about getting her more speech outside of school through medical insurance, but knew with everything else she's involved in, it just wouldn't be practical. So we've done the best we can as a family to help her speak better. We've even been praying about it a lot lately.

Last week, at her activity days class for church (all the 8-11 year old girls meet for one hour to work on goals) they were doing some family history. In the beginning of this little booklet they were filling out, there was a space for Julianna to write about herself. The question was: What do I want people to know about me? Julianna's answer: My family wants me to speak well. I really couldn't believe this was what she chose to write. Have we really been coming down on her that hard about it? I didn't think we were. So why was this the first thing that came to her mind? It made me really wonder. I mean, after all, being able to speak well is such an important thing. And this girl likes to talk a LOT. So when she has to use all her energy just to get out a few words, and I am standing there, waiting for her, coaching her, it gets old after a while. It really is not easy. And I feel bad that this is what she chose to write, of all the things she could have written.

A few weeks ago, I miraculously noticed (yes, another miracle coming) that when Julianna would shake both of her hands, she wouldn't stutter when she talked. I really don't know how I noticed it, I just saw her shaking her hands one day, and she wasn't having any trouble speaking at all! How could this be? So I stopped her, and said, "Julianna, did you just notice how you weren't stuttering when you were shaking your hands? Try it again!" She thought it was funny, and tried it. And it worked again. The rest of that day, every time she began to have trouble speaking, I would motion for her to shake her hands, and she would be fine getting the words out. And this has evolved over the past few weeks to her shaking only one hand slightly, and she really won't stutter when she does this.

I have no idea why it works. Maybe the motion of her hands someone sends the right signals to her brain, calming it down and allowing her to think clearly, and then speak clearly. Now that it's pretty much working (she might not stutter, but she does have the ability to stop and really think about what she's going to say instead of stuttering through it) I have to laugh about it. Which is worse, her shaking her hands, or stuttering? Hands down, I'll take the shaking hands.

When things like this happen, I have to think about how crazy my life as a mom is. I could never have imagined it to be this way, not in a million years. The kinds of things I have to work through, and learn, are beyond what most parents ever face. I still wonder why I was chosen to be this amazing girl's mother, but I was, and I feel blessed. Shake that stuttering away, Julianna! Whatever works.

Wednesday, October 1, 2014


I hope I don't jinx myself by writing this post, but I really think a miracle is happening in our house, right now. I don't know why it took so long for this miracle to happen, but it finally is. Julianna has not bitten her hands in anger or frustration for 9 days in a row. Nine days where our house has felt a little more normal, peaceful, and enjoyable. Nine days is a miracle, because we've been dealing with this troubling behavior for almost 9 years, pretty much daily. I almost don't want to believe it, but it really is happening, and it's all because of that 1, 2, 3 Magic program we are doing with her.

It's interesting that I've tried literally every method out there to rid her of this behavior. Chewelry (chewable bracelets and necklaces), flavored chew sticks (we got her chocolate), completely avoiding the biting, telling her to count instead of bite, putting gloves on her hands when she bites (which she hates the feeling of), physically holding her hands down and away from her mouth, the list goes on. Nothing has worked. I guess what I am realizing is that sometimes, when you are raising children, things don't always change when you want them to, no matter how hard you pray or try. Sometimes they change because you felt inspired to take them to a new doctor, who introduces you to a method that you think has no possible chance of working. And then you try it, and it does. It's a miracle. After all these years, we are starting to put this one troubling behavior of hers behind us, and that means our family can be happier. But most importantly, she can, too. She will feel better and more at peace with herself because she doesn't have that impulse anymore.

We are hoping to get to 21 days in a row (the time it typically takes to break a habit) and if we get there, she will get her new doll and her psychologist said she will give her a nice certificate and we can have a little party for her. She's just as excited as we are! When we met with her last Saturday, and told her all the progress she's been making, her response was, "Oh, praise the Lord." And she is right. It took a long time to get to this point, but we got there. And I've had to trust in God for all these years, believing that we could conquer this.

I have been studying the topic "Trust in God" in my scriptures this week. I think it was something I needed to really, truly understand in my life right now. On Monday morning, after I had a quick but meaningful study (you never know when your kids will come storming into your bedroom), I came downstairs and remembered Julianna had to do a make-up math test because she got a low score. We sat down to do these problems, and I thought, there is no way I am ever going to help her understand this stuff. How is she ever going to learn this? How am I going to find a way to help her learn? And how will her teachers and aide do the same? I felt very frustrated and defeated, but we got through it the best we could (mostly me doing it) and I let her finish getting ready for school. Just when I started to feel very down and hopeless about the entire school situation, I heard these words come to my mind: "Trust in God." I immediately felt peace and hope again, and tears came to my eyes. She will be able to learn it, just maybe not right now. But I think about how far she's come in school, and again, I think of the miracles we have witnessed. I never thought she could learn to read, and she has. I never thought she could learn simple addition, and she did. I never thought she could learn to spell common words, and she can, all by herself. Each thing we accomplish with her just takes time, much more time that other kids would need. But she will get there.

Other little miracles happening right now...Nathan knows about 4 colors and can identify them. He has been working with an early start teacher once a week for an hour for about 3 months now, and he's already met all his goals twice in that short of a time. He continues to amaze me every day, and is the friendliest little baby around. Everywhere we go, he waves and says hi to people, and brightens up their day with his smile. He tries to count objects, and he sings little songs, and he knows animal sounds, and he just keeps on progressing rapidly. I don't think anything will slow him down at this point.

And of course I can't forget Blake. Doing well in school, becoming more independent, writing his own stories just like I did when I was young, and becoming an excellent piano player. He even wants to play the flute and uses my old flute to practice on. Yesterday when I got home from the store, he opened the garage door with the flute in his hand, excited to tell me that he could now make two sounds out of it. I love seeing that he's excited to play instruments and wants to do well. And with all that he has to put up with in this house, he's a great kid. It's easy to neglect your child who doesn't need as much help and attention to do well in life, so I am trying to make sure I don't do this. He is becoming a great little guy and will be baptized in just 2 months.

And as for me, I am taking things one day at a time. I started watching the show "Parenthood" on Netflix because so many people have told me I needed to. Well, it has brought back all sorts of emotions for me, seeing these great parents deal with their child's Asperger's diagnosis and then try to figure out what to do from there. I've definitely been there and felt what they are feeling. And watching them go through this process has made me feel like I really need to work on healing the pain that still hides deep down inside me from all that I have been through. I guess it's easier to just hide those feelings away and hope they can stay hidden. But what I need to do is face all of them, and rid myself of them, and replace them with better feelings and hopes so that I can feel truly at peace. So I, too, will get there, will get where I need to be as a mom, as long as I continue to trust in God.