Friday, June 26, 2015

Discovering Julianna's Talents

When I was a little girl, I wrote stories. My mom saved a big binder full of stories I wrote, which were also illustrated by me. I still remember many of them. "Homer and Rusty's Week" (about my cats); "My Teacher is an Alien," "The First Unicorn" (which I rewrote later in college during a very hectic semester and still plan to polish in my adult life). I also loved to take my favorite books and recreate them on my own paper, in exact detail. I loved reading the "Serendipity" series; beautifully illustrated and brought to life by the vivid and whimsical descriptions. I would create my own paper book and write out every word and illustrate every page. I absolutely loved writing stories. I even had a babysitter when I was in 4th grade, a big 6th grader, who also had a love for stories. When she would babysit me and my siblings, we would go in the backyard and we would all take turns coming up with stories and acting them out.

But then something happened as I got older. Maybe the homework was more demanding, or just by virtue of maturing I didn't spend time imagining up new stories and putting them to paper. But in my English classes throughout middle and high school, every teacher told me I would be a writer, and should pursue it. So I majored in English. I wrote lots of great research papers, literary responses and analyses, and even got to write poetry and creative fiction here and there. I also edited for publications because I loved polishing another person's writing, and still do. After marrying my husband who went on to become a high school English teacher (and dreams of becoming a published author), and having a family, that talent I developed as a young child went on the backburner.

Over the years as I have raised the kids, Blake has been the only one that seemed interested in writing stories. His gift to Julianna a few Christmases ago was a story written and illustrated by him. He has a little collection that is building as well, though he is not a reader like I was. This past week I have been seriously considering going back to school to become a special education teacher. And in the end, I felt strongly that I still needed to be home with my kids; how much longer, I don't know. And interestingly, the reason I felt like not pursuing this goal was because I need to write more, like I did as a child. So I contemplated this on Wednesday, and as I was putting the kids to bed, Blake said he wanted to write a new story. And suddenly I felt inspired to draw for him the curve of a story, which rising action, the climax, falling action, resolution. I explained each step and broke it down. I made lists for him to create characters and showed him how they fit into the curve. I gave an example by using "Cinderella," and he filled in the parts of the curve, and was able to figure out the climax of that story. I could see the wheels turning, and he was getting it. And he was then very excited to head to his bed and write a new story with this new information.

Now all this time, Julianna was close by, listening, but I wasn't sure how much she was understanding. I'm usually not sure, but I always try to include her in these conversations because I know something might stick with her. So after Blake went to his bed, she said, "What about me, Mommy? Can I write a story, too?" I was ecstatic. To this point, she has been able to write somewhat of original ideas, but usually they come from her current favorite show. And lately, if she hears a good My Little Pony Song, she will find a youtube video with the lyrics and sit down to write all the lyrics out on paper, pausing as she goes. So she does love words, but is still learning how to use them to create.

I had to think of a way to help her write a story, and quickly. So I said, "What if you write a story about your favorite My Little Pony characters, Fluttershy and Applejack?" She thought that sounded fun, so at the top of her page, I wrote a question, and then number the page below from 1 to 5. I asked her to write a 5-sentence story that answers the question. I told her I would look in the morning to see how she did. Right when she woke up, she showed me her story, and I was beyond proud to see such original ideas, and good spelling as well. So last night, she had her book there, and wanted me to do another one. So we came up with a new question, and as Nathan fell asleep, she came up with a completely new 5-sentence story, within about 10 minutes, and asked me to read it. Again, I was so proud. This little system was working!

She wanted to write another one, and I decided to challenge her. I wrote a new question, and then wrote 10 sentences instead of 5, and asked if she could do it. She got right to work, and as I sat there, I could see her pause, and think deeply about what the next sentence would be. She was lying there, thinking, focusing, intently, on this task I had given her. The level of focus was almost incomprehensible to me! She wasn't fidgeting or squirming, or getting frustrated. She wanted to write the story! And she did, a whole 10 sentences within about 15 minutes. And again, her words were spelled correctly and the stories were original and creative.

It's always so rewarding to discover new talents that Julianna has. If writing little stories can help her focus and create, then it will be the summer of writing stories. I am glad I can share my talents as a mom, and spark that imagination in them that, most days, seems to get lost in all the media my kids view, despite my best attempts. Julianna can imagine, can think intently, and can create her own ideas. It only makes me want to pursue my own writing even more, so we can share together, and who knows, I might even get some really good ideas from her!

Wednesday, June 17, 2015

More Prayers Answered, and How to Play the System

My last post talked about how Nathan's early start class regulations are changing, and since then, I've sent another email to the directors at our regional center and been vocal about my concerns. Other parents have done the same. We've also been praying that something would change. I didn't know what might be happening until today, at Nathan's annual meeting with his case worker from the regional center. Lots of surprises at this meeting!

Recently, Nathan's teacher did an developmental evaluation and his scores were above his age level. Now his class is supposed to be for children who are developmentally delayed. And when he started, he was delayed, just enough to qualify. His teacher warned me that regional center might cut services for him. So going into this annual meeting, I was prepared, but still not sure what might happen. I was asked a series of questions about his development, and once it was scored, he tested at 34 months for expressive language and 30 for cognitive ability. He's 30 months right now. In order to qualify, he has to have a noticeable delay, obviously! So we talked about how he might be transitioned out after 30 days and at first I was fine with this. He has improved dramatically! He is not at risk for autism or any other diagnosis. His chromosome duplication could have caused any number of issues, but it hasn't, and I am glad. But there was one reason why I need to keep him in these services, and it is a big one! This is when you have to know the system of special needs services and how they work, or Nathan would have been dropped, no question. And because of my experience with Julianna, I knew that there was more we could do.

At 33 months, a child with early start services will be given an evaluation with the local school district to transition the child to services that begin at 3 years old. This meeting is very important for Nathan because he gets speech therapy, right now through our health insurance, and it's a 40-min drive one way for me. Once he is 3, however, the therapy will be provided by the school district. Plus he will then have an IEP (Individualized Education Plan) with the district, which means he can also qualify for preschool at his same school through a special grant. I knew all of this because I've been talking to his teachers and trying to get a better understanding of how it all worked. If I were to allow Nathan to be discharged from regional center at 31 months, I would be two months shy of that important meeting. And this would delay his services, because once you are out of regional center, your child is treated like any other child in the district, and my wait time for having the evaluation for speech would be delayed, and might not have been considered as highly. So how would I get his services to continue for two more months, even though he clearly did not qualify anymore? His case worker understood where I was coming from and wanted to help me. And she was willing to help me work the system a little to get there.

I brought up the fact that my daughter has autism and receives services, and that puts him a higher risk, along with the chromosome 22 duplication. I told them that Julianna was discharged, at my request, from the regional center at 2 1/2, and it wasn't until after 3 years old that I noticed more symptoms and it then took years to get her back in the regional center. I didn't want this to happen again. I wanted to be absolutely sure that Nathan would be okay. She agreed, and noted that I requested at psychological consult for Nathan. And because these consults cannot be scheduled quickly, it would definitely put him right at that 33 month mark. Mission accomplished. The system works, as long as you know how to use it. Nathan will get his very important transition meeting before 3 years old, and there will be no delay in services. And hopefully, he will continue to attend this school at 3, assuming he gets the grant. But that wasn't all...what about the change in requirements? Would I still have to attend with him every day to qualify for the early start class?

She told me that regional center has since changed their ideas and come up with a way to transition the kids. (This is exactly what I've been emailing them about, by the way.) For the kids like Nathan who have already been attending the class, the parents are not required to stay, and they will phase out like normal. But for the kids who are just coming in, the parents will need to stay because the regulations have changed. She is hoping that this will be the final determination, though she's not sure yet. Either way, this meeting was wonderful!

I have learned SOOO much about special education laws and how to make sure my kids get the services they need. Maybe I should become an advocate?? And I'm so happy that our prayers have been answered. I'm so glad that Nathan will get what he needs to continue progressing. We are so happy to have this cute little guy! He has a bigger-than-life personality and a temper to match, but we love him!

Monday, June 8, 2015

Too Good to be True

Over a year ago, I called our local regional center because I was concerned Nathan was behind in his development, especially speech, and they came out to evaluate. I told them about his cleft palate and chromosome 22 duplication, and that it could cause global delays in development and other areas, and they did not hesitate to offer him services. At the time, it was a home program where he would have a teacher come for 75 minutes, once a week, and play one on one. It was great for him, and I loved his teacher. But she decided to get another job to care more for her baby last fall, and she then told me about the center-based option. Center-based? She explained it was like a small little preschool class for 18 month to 3 year olds where they would work on developmental skills. How often is that, I asked? Three days a week, for 3 hours and 15 minutes. I was stunned. So I could send Nathan to a little class with 8 other kids and 3 teachers, 3 mornings a week, for free? And he will develop socially, emotionally, and academically? FREE? Funded by Regional Center, no less. Sign me up! I was so excited for this opportunity and felt completely blessed by it. Nathan could make little friends and I could get some me time during the mornings. Sounded perfect.

And it was, and has been, until just last week, when a letter was sent home to the parents saying that Regional Center has changed their guidelines in order to receive services. Instead of allowing parents to drop off their kids and come back later, one parent or guardian now has to stay with their child the entire time, each day, beginning July 1st. This was to help facilitate more parent involvement at this young age, part of the state's rules regarding early start intervention. What? How could this be? My wonderful me time would be gone! I would have to stay with him? But why? What good would it do for me to be there? He's learning independence! He's learning classroom procedures! He's growing so much, without me there! And how would every family be able to meet this new guideline? What about parents that both work? Or don't have family close by for support? How would all these precious little children get the crucial early intervention they so need?

I talked with his teachers and other parents that day the letter was sent home, at the end of the class period. Everyone seemed in agreement that this new rule was unnecessary. I told them that I would be more than willing to make some calls and take action, that I'd done it before and I would most certainly do it again.

So I first called the Department of Developmental Services (DDS) and told a director there if she was aware of this change. As far as she knew, the laws for early start had not changed one bit. So I found out, to my knowledge at that point, that our regional center was not truthful about why they had to make this change. They said it came from the state and that there was no other option.  But the DDS did reinforce their views on parent involvement in early start intervention and how important it is to see better results, and told me to call the regional center.

So I called the regional center, but of course got voicemail. Friday came, and no call back. So I wrote a carefully crafted email stating why it was not a good idea to require parents to sit in with their child for the entire 39 hours of early start class, and gave some alterative options, like having a monthly parent training, or weekly meeting with the teacher. Monday morning came, and I didn't get a reply. As I began driving Nathan to his craniofacial appointment around 9 am, the thought occurred to me that I would be just 2 minutes away from their main office, and that I could easily stop by in person to fight this issue. And having Nathan with me would be even better! How could they look at his cute little face and willingly make these life-changing services more difficult to obtain?

I called on the way to the appointment, and finally got through to the secretary of the early start director at regional center. I told her no one was returning my calls, and that I wanted to come today, in person, to talk to someone. She took the message, and I headed to the appointment. Toward the end of Nathan's visit, I got a call back from regional center. Another director called me back to let me know the only person I could talk to would not be back until later in the afternoon, and that she would make sure to have her call me today. I was very hesitant, but agreed to let her send the message.

Earlier this afternoon, to my surprise, the early start director did call me. We had a very nice conversation, and she told me that the regional center was audited last year for not complying with the parent involvement guideline. She said Nathan's school is one of only TWO schools that provide a center-based option, and that this model has been done away with all over the state of California. The model elsewhere has always been a "mommy and me" where the parent would be in attendance to help teach their child as the teacher taught them, so they could then go home and reinforce these new skills. This "drop-off" idea is no different than getting day care or preschool, and it hadn't been dissolved at Nathan's school yet because of how well the program is received in the area. Children under 3 need to learn in their natural environment, or with parents in a community setting, like library story time.

As I listened to her describe all of this, I began to realize how lucky I really was to have had Nathan in a class like this for as long as I did, and maybe it was too good to be true, that my reasons for fighting this change were mostly selfish. I remembered when Julianna was first offered early start services at 18 months old in Utah, and I took her to a class with little children of all disabilities. I sat there with her and watched as all the other moms helped their children with different skills, like drinking from a straw or cup, or stacking blocks, as the teacher facilitated the group. I remember the feeling I had being there as a young 23-year-old mom, scared to death of even thinking that anything could be wrong with my child, and because of how scared I was, I NEVER WENT BACK. I couldn't be there in that room with those children and parents. Not yet. And now, here I am, 10 years later, with my youngest child, and I might have to do the same thing. I wonder if I will feel the same as I did 10 years ago? Am I ready to face all of these things yet? I think so, because this time I know Nathan will be okay. I was so unsure with Julianna.

At the end of our conversation, I told her that most parents will not be able to meet this new qualification, and that there needed to be some middle ground in order to have a smoother transition. I suggested that regional center provide a combination of center-based and home-based services so that the children could benefit from both. I said maybe a parent could attend class with their child just one day a week, and then another day that week someone could be sent to their home to work with the child one on one. She really liked this idea, and said she would present it to her directors and also the school to see if it could become an option. The conversation ended well, and I regretted somewhat my very forceful letter I sent just a few days ago.

So I won't have my precious me-time anymore in the mornings. I won't get to go grocery shopping by myself while he's at school and will have to again face the terror of having him in that grocery cart, seeing items being tossed to the ground as I shop. I'll be bringing him with me to the gym now, every time I go.  The me-time was good while it lasted, and it really was too good to be true. I was spoiled by having this free class for Nathan. And now I will be even more spoiled to see him interact with those little kids and his teachers, and feel more a part of his development. I think this will be a really good thing. Sometimes change is good. After all, he'll be 3 in 6 months, and off to preschool. Might as well treasure these last few months with him.