Friday, May 23, 2014

Going Casein/Dairy Free: Starting Over

On Monday I announced that Julianna would be going casein free, the first step in implementing the GFCF diet. The week before that, we found a milk that she would drink: original almond milk, sweetened. I like the Blue Diamond Brand, but I'm sure Silk would be fine, too.

So this week, when buying products at the store, I made sure to read every label and make sure there was no milk or soy in the ingredients. Luckily, her cereals and crackers do not have milk. Instead of her usual cup of yogurt after school, I made some cook and serve Jell-o pudding with almond milk. It did not set very well, but it tastes good, and she has been eating that every day after school. Snacks included Fritos corn chips, fruit, rice cakes, and dinner has been either cereal (I'm not that prepared yet!) or pasta, because most pastas do not include milk, although they do have gluten, which I don't have to worry about yet. I also made sure to buy natural peanut butter, Skippy All Natural with Honey, and Welch's jelly. Most breads include milk as well, so I have been giving her a peanut butter corn tortilla roll-up instead. I felt accomplished, and ready to see how going without milk would affect her behavior.

This morning, as I was spreading the peanut butter on her tortilla, I realized that I was using the same peanut butter jar to spread on the milk-based bread for Nathan at his lunch time. Oops. Though there are only traces of milk in the bread, it is something, and that means I contaminated the peanut butter jar. So I made a note to buy Julianna her own peanut butter and jelly and I will label it clearly! No harm done, just start again tomorrow.

And all week, I have been meaning to tell her one on one aide at school that we have started taking milk away from her diet, but keep forgetting. I would reassure myself that her lunch was milk-free, and I would tell her not to let anyone at school give her food. Well, this morning, I finally remembered to tell her aide, and she said, ooh, she's been drinking milk at breakfast every day this week, and eating a muffin, which no doubt was made with butter or milk. I didn't even know she took Julianna to breakfast! I guess the school has a free breakfast, and they also serve it again at recess, and that's when Julianna would go, and this girl was willingly drinking milk even though all week I've been telling her she can't drink regular milk! I looked at her, and asked her why she was doing this, and she said, okay, okay, I won't drink the milk anymore! Sneaky little girl.

So my first 4 days were a flop, but at least I have two weeks to get this diet figured out and refined. So glad I am taking it slow this time, and not cold-turkey. There really are so many things to remember when you implement a diet like this, and I am sure it will take the full two weeks before I can say she is casein-free! Not giving up yet!

Wednesday, May 21, 2014

Julianna, Part 9: Fighting Regional Center, and Finally Winning

Some really neat things happened as a result of Julianna potty training. Obviously, our family dynamic changed dramatically, and Julianna had more confidence in herself. But I also met some key people that helped me on my path to getting services for her. One person was the secretary of the ABA agency we went through. She heard about my situation, and told me about a new center that was advocating for special needs children, for FREE. Every person I came in contact with told me outright that the fact that Julianna wasn't receiving regional center services was a crime, and I had to fight it. I would tell them that I did fight it, three separate times, and nothing came of it. I was tired of going to so much effort for nothing.

But I decided to give this center a call, and met with them so they could review Julianna's IEPs and reports, and see what they had to say. They agreed that Julianna clearly qualified, and said they would advocate for Julianna. So I left that in their hands, and could focus on other speaking out on behalf of Julianna. Another person I met during this time told me about something called the Area Board of Developmental Disabilities, a group of advocates/educators who met reguarly to discuss how special education law was being violated. They were actually looking for people who were having trouble with the regional center, so I thought it couldn't hurt to send them an email with my story.

So glad I did, because the director of this area board wanted me to read my story at an upcoming meeting where the new director of the regional center would be present. Other parents would be doing the same. I felt honored that I would be given this big opportunity to speak out for other parents and make a change. Turns out the regional center's previous director had been caught breaking laws, and the entire center was being audited. So this area board wanted to make sure the new director would hear from people personally who had been affected by this dishonesty. Here is an excerpt of what I said at the meeting:

"I really think that IRC needs to change their policy on who they service--if a school district gives a diagnosis of autism, then service the child--don't go by your own criteria--autism is autism! Just because my daughter wasn't diagnosed until the age of 4 and seems to be doing well in school and is considered high functioning to most does not excuse the fact that she needs these extra services through the IRC to be fully functioning in all areas of life. The IRC provides services that schools simply cannot provide, and I know my daughter has suffered these last 4 years because she was never given their help. I have suffered as well emotionally as a mother and feel like my daughter has not been given the rights she deserves as a child with special needs."

I was very hesitant to go the meeting at all, because it was just two days after Julianna had used the potty for the first time! It was a 6-hour meeting, and I had no idea when I would be speaking. They wanted me to bring Julianna, so the new director could actually see the children that the regional center has been denying, and agreeing to do this meant I would need very close access to a potty. Plus, Joel was not available that morning. Good thing I have wonderful friends who come to my rescue. One of my good friends offered to drive me there, and help keep an eye on Julianna (and Blake? I don't remember) so I could calm my nerves.

The room was full of people. I was able to listen to two people speak before me, and when it was my turn, I knew they were recording each speaker. All I could think was, "please don't cry." I stood up to read my story, and I was only 3 sentences into it before I was crying. But I forged ahead, getting all the words out, and I made sure to look the new director in the eye because I thought she might remember me if I ever applied again. Once I was done, we left, and I was so happy I chose to speak out for other parents. It was one of the most powerful experiences I've ever had.

Julianna's 1st grade year was the best she'd ever had. She was placed in a resource class of children grade 1-5, only 10 children in the class. There was a resource teacher and two aides to assist. She would "mainstream" or attend the general education class for a few hours a day. The progress she made was astounding. I could not be happier with her placement.

But that advocacy center was dragging their feet...after a few months we had gotten nowhere, and I was getting impatient. I had just fought the regional center in person using my own story and voice, but this center was not making anything happen. They were supposed to have more power than me. So far that was not proving to be true. And so once again, I decided to take matters into my own hands. I began researching online ways to get help from regional centers, to get them to listen to you right away. And I came across the phrase "blowing the whistle." I learned that if you use that phrase in the subject of an email, whoever is in charge of that particular organization is obligated to take your request very seriously, and respond as well. So I found out the email addresses and direct phone numbers to the director and all those who served under her, and I took action. In January of 2011 I wrote an email with the subject: "I'm a parent blowing the whistle," and gave my entire history with them.

It worked. I heard back from them the next day. And my email was forwarded to the oh-so-compassionate Mrs. Macon, who had already previously denied Julianna 3 times. She was still over the intake department, amazingly. But this time I wasn't going to let her push me around. This time, I was going to get those services no matter what. My daughter needed more help than she was getting. And I was ready to fight to the death...
I let Mrs. Macon know that the Diagnostic Center where we sent her info (at her request instead of giving us services) finally made a decision, and we got the letter in December. The letter simply said: "Your daughter does not qualify for the Diagnostic Center. She would be better served by the local regional center." I'm sure that was a big slap in the face to her. I let her know that we've been going in circles, getting the run around, for over 3 years now, and enough was enough. I demanded that Julianna be given a new evaluation by a different psychologist. What usually takes months to schedule only took days. This time, the regional center was not going to mess with me. I emailed, I called, I bugged them until they were sick of hearing from me. Though I was able to schedule it in early February of 2011, the date we were given was April 21st, and that was after pulling some major strings for me. I knew I had done all I could do, so I went with it. April 21st could not come soon enough.
Once again, I made sure Julianna was at her worst behavior. And before this appointment, I spent days assembling all her paperwork from doctors, therapists, and schools, into a GIANT binder. The biggest binder that is even made, and it barely held it all. I organized it into categories of medical, school IEPs, school evaluations, my letters and emails, and regional center letters. I wanted to go in there prepared, to show them exactly what this little 7-year-old girl had been through all the years she was denied services. This was Julianna's history, what we had been through together, and it was a lot in just 7 years.
I also want to be clear, so you all understand something very important. The services that regional center provides are NOT covered by insurance. But they are services that are crucial to a child with autism. This is why I was so intent on getting her coverage there. However, in recent years, in a few states, these services, specifically ABA therapy, is often covered by health insurance. Big name insurance finally came around and realized how beneficial ABA is to children with autism. But during those years, it was not covered, and no one could afford to pay out of pocket for it, unless you were rich or going into extreme debt. So what I was fighting for was something Julianna should have been receiving for many years.
Anyway, the evaluation day finally came, and I was never more nervous. I prayed and prayed that Julianna would be assigned a psychologist that would really observe and evaluate correctly, and that I would be able to say the right things to convince her how much she needed more help. As soon as I met the psychologist, I got the best feeling. I knew she cared, and wanted to learn all she could about Julianna. I didn't feel any tension in the room, I was able to be very honest with her about what we had been through, how many times we were denied services. She was impressed by my binder and looked through it carefully. She agreed that Julianna was a very unique child with behaviors that were not just autistic, and she pulled out the big Diagnostic Manual to try to figure out what her movements and symptoms might be classified under. After a long 2-hour assessment, I finally heard the words I had been waiting to hear for over 3 years: Julianna is eligible for regional center services.
The feeling I had in that moment is indescribable. The weight I felt lifted off me, the hope that rushed through me, the absolute joy of knowing that finally, finally, Julianna would get more help, brought me to tears. I wanted to hug this psychologist! All the fighting, emailing, calling, pestering, had paid off. And Julianna's future was now brighter.
But what really surprised me were the new diagnoses that Julianna received that day. She did not qualify under the category of autism; instead her cognitive delay placed her right under the cut-off mark for eligibility, so her main diagnosis was "mild mental retardation." She also brought up some other things that I had never considered: tics or Tourrette's syndrome, stereotypic movement disorder, anxiety disorder, and kept the diagnosis of PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified; this diagnosis has been replaced with a different one in the Diagnostic Manual) Hearing her say all these things was a bit alarming, because now I had even more things to figure out about this girl who has eluded so many doctors over the years. But for now I could rejoice in knowing that my fight with regional center was over.
Onto the next battle...having a special needs child means never being without a battle to fight.

Sunday, May 18, 2014

Julianna, Part 8: Potty Training

After being turned down by the regional center for the 3rd time, and then by the school district for potty training help through an ABA provider, I felt pretty hopeless. She was about to start 1st grade in just 2 1/2 months, and I did not want her in a diaper all day at school. I knew that she would be so much happier and carefree if she could achieve this crucial life skill. But the fear she had was overpowering, and I didn't know how to help her anymore. All my attempts were unsuccessful, and the last two times I decided to keep her in underwear until she used the toilet, because I knew she wouldn't go in her underwear. She ended up withholding so long that we took her to the ER twice, and each time was traumatizing for her, which only prolonged her inability to toilet train. The previous summer, I had potty trained Blake in just 3 days, so I knew I had the ability to do it; when it came to Julianna, she just needed the right person to do it, and that person wasn't me.

I began researching online, calling people, looking for doctors or specialists. I reached out to a good friend who was a teacher of an autism kindergarten class, tried her methods, and that didn't work either. I knew that those ABA therapists were the answer, but I also knew they were expensive. Because I had no other options, I began calling some ABA providers, explaining our situation. I told them neither the regional center nor the school district was helping our child in this area, and wanted to know how I could hire someone to come to our home just to potty train Julianna. I found that this is extremely unordinary:  ABA therapy is done using a specific protocol, and to have someone come to work on just one skill was not something they did. But I begged and pleaded, and told them I just needed help to do this one thing. So this agency had to talk to the higher-ups and pull some strings, but it was approved; Julianna would have a qualified ABA therapist coming to our home for 16 hours, broken up into two 4-hour sessions, and one 8-hour session, in the second week of August, literally days before she started 1st grade. Everything was riding on this, and we were putting all our trust in these people, now paying for the service ourselves.

Well the big day came (I say this a lot, don't I?) and we met Julianna's therapist, Wendy. The first day she spent a whole 4 hours getting to know Julianna and her interests, building a rapport with her, so she would be comfortable when they got to the potty training. After it was over, I was a little unimpressed, and felt like spending the first session doing this was a little wasteful. But then during the second session, Wendy really stepped it up, and spent more time in the bathroom with Julianna. I began to feel like this was going somewhere, though Julianna still had not done anything yet.

The day before the final session, we were told to fill Julianna up with liquids and make her withhold right after dinner. So we put underwear on her around 5:30, and she stayed dry and clean all night. This was Julianna's last chance to have success on the toilet with Wendy during this long session. I had never been so nervous. She arrived at 9 am, and we got started right away with the "potty party." Basically, this meant we would be in the bathroom, Julianna sitting on the toilet, until something happened, all day if we had to. We brought all her favorite books and toys into the bathroom, yummy treats and drinks, a portable DVD player with movies, everything we needed to keep her occupied. The first part of the day, Wendy was there with her, and as it got to lunch time, I was asked to be in there with her, coaching her along. I couldn't help Blake lay down for a nap, and he actually fell asleep on my lap as I sat next to Julianna on the bathroom floor.

I knew Wendy would be leaving at 4:15, and as the hours ticked by, and nothing happened, I was so worried that all this would be a waste of time and money. Around 2 pm, Julianna began to get very upset because of the distress she felt, and was screaming nonstop, and flapping her arms; I had never seen her so worked up in her 6 years of life. She was trying so hard NOT to go, but she also needed to go so badly that it was causing her to be in lots of pain. But Wendy didn't give up on her, and kept telling her she could do it. I was on the other side, doing the same.

This continued for over an hour, and at one point I had to go downstairs to get something, and while I was down there, I felt impressed to say a prayer for Julianna. I don't think I've ever felt the spirit so strongly, or prayed with so much faith in my entire experience as a mom. I prayed that Julianna would overcome this fear and be able to release on the toilet with Wendy there, because I knew that would be the only way she would progress. I went back upstairs with more hope than I had before. And around 3:45, just 30 minutes before the session was over and we would have to say goodbye to Wendy, Julianna peed in the toilet. She cried and cried, and Wendy and I celebrated and told her how proud we were of her. All it took was doing it that one time, and after that, she was able to go with no problem. Bowel movements came in the following week, after many accidents, but Julianna was able to do it, finally, after many years. She still remembers Wendy and talks about her.

A few weeks later, the bills arrived. We got the first bill, and had to figure out where the money would come from. But because of our faith, we were blessed: we got two separate checks in the mail, one was from a traffic ticket that we got reimbursed for, the other was from our mortgage company, completely unexpected. These two checks equalled the exact amount that we needed to pay the ABA provider. This was a huge testament to us that when you have faith, miracles will happen; the biggest miracle being Julianna, who overcame her fear of using the toilet, something we were told many children like her would not be able to do.

Because she was trained just a few days before school started, the IEP team allowed her to do independent study for 10 days so I could continue working with her at home. By the end of that period, she returned to school, in a new resource class that had a bathroom in the room, and very supportive aids to assist her. Things were finally looking up for Julianna: mastering this life skill was a huge burden off everyone's shoulders, mostly mine. I could finally breathe again, for a little while...

Thursday, May 15, 2014

Julianna, Part 7: The Kindergarten Nightmare

Julianna's kindergarten year got off to a rough start. She was placed in a special day kindergarten class, and the school had not secured a teacher yet, so there was a substitute teacher for the first two weeks. I was not happy about this, and made sure to go observe the class, often, to make sure things were going okay. This substitute did not have any training in special education, but he was really good at playing the guitar. In fact, all he did, mostly, was gather the kids on the rug while he played guitar for them, singing familiar kids songs. So glad I was sending her to school for this.

And then suddenly, the class became a pre-k/k class, and that was not what I wanted for her. After two years of preschool, I didn't want her to be grouped with preschoolers, and plus it was not mentioned at the last IEP meeting. I was starting to see that school districts just did their own thing, without notifying the parents to see if they cared. So I started emailing the special education director for the district, regularly, who I will refer to, as I mentioned before, Mrs. Fox. She was nice in emails, but in person it was a whole different story.

So after emailing Mrs. Fox repeatedly, along with a few other parents, some changes were made: she decided to split the K/pre-K kids and we were finally getting a good teacher who was trained to teach SDC. Really, if parents had not spoken up, this would not have happened. And this seems to be the case in many school districts: if you don't know how IEPs work, or placement, or your rights as a parent, they will do whatever they want. Sad, but true. The new teacher was great, things were going better.

But there was that problem of her not being potty trained. She was "habit trained" at school, went through the motions on a certain schedule, did so at home, no progress. I still held out hope that a miracle would happen. And then more bad news: her wonderful teacher was being transferred to the high school following winter break. Really? Why did the high school need her more than these wonderful little SDC kids? I was told there would be a teacher following the break, but after the first experience, I wasn't so sure. And I was right, they couldn't find a good enough replacement, so they hired another long-term sub. I made sure to meet this new teacher and observe him in the classroom, and amazingly, he was SO great with those kids. He took this job very seriously, and really wanted to help in any way he could. He would communicate with me daily by email, letting me know about her toileting and other concerns, and was so involved. So I didn't fight it this time. But what I did fight was the potty training help.

The first thing we did was give the regional center one more chance to help. So in March of 2010, the IEP team and I put together another large file full of assessments and reports, and sent it off to the regional center, for the 3rd time. There were letters from therapists, psychologists, teachers, you name it, and we were all confident that this time, this time there was no way she would be denied. But wouldn't you know it, she was. Again! For the 3rd time. I don't even have this denial letter in my big binder--I must have thrown it away because I was so angry. I felt like regional center was a lost cause, and decided to give up for now.

Then I began talking to higher-up people in the county who were over special education, called SELPA, because I wanted to know exactly what Julianna was entitled to within her educational needs. I ended up speaking regularly with a woman who was very helpful, and told me that because Julianna was not getting regional center services, the school district needed to fill in the gaps for her. This included potty training help. So I started calling ABA therapy agencies, letting them know what I was trying to do, and they confirmed to me that school districts will pay for services when regional center is denied, though it is not easy to secure. That was all I needed to know. I began emailing Mrs. Fox, letting her know what I wanted to do, and this is when the problems began.

We emailed back and forth, I would tell her all my ideas and requests, for getting ABA therapy secured through the district, and she would say she would be happy to discuss them at the IEP meeting in June. I even resorted back to a suggestion given by the intake person from regional center, Mrs. Macon, who said Julianna would be a good candidate for the Diagnostic Center because of her complex learning and behavior profile. Mrs. Fox said we could proceed with that as well. I felt like this meeting was going to be just fine, that I had made my requests clear and undeniable. Oh, was I in for a surprise.

I began to dread these meetings because it meant I would have to face Mrs. Fox in person. This meeting, in particular, I requested what I had been doing in all the previous emails, fully expecting Mrs. Fox to say yes to each thing. But instead, I was told "no" after each request, and she would cite some special education code that exempt Julianna from receiving services that she needed. I felt my blood boiling inside. How could she be so two-faced? How could she deny that Julianna needed these services? The room became tense and heated, and I went back and forth with this woman who was supposed to be helping my child have a brighter future. There was no taking her down; I was a lowly parent, not some laywer or advocate with any power. And she knew this, and used it to her advantage, even though I am sure in her heart she knew that what I was asking for was completely legal and appropriate. The teachers in the room were silent, because to speak out against the SPED director would be the end of their careers. No matter what I said, no matter how much I cried, this woman was not going to give me that ABA therapy so Julianna could potty train. She even went so far as to say something so unfathomable that I reported it to her "bosses":

"I'll have you know that we have many children in upper grades that are not potty trained, but otherwise doing fine academically."

Did she really just say that? Did she just tell a parent that only wanted to help her child achieve a very important life skill that it's not really that important?? I knew I wasn't going to get anywhere with this evil SPED director unless I got more help. But she did agree to send Julianna's file to the Diagnostic Center, probably because it didn't hurt her bottom line.

I had never used my voice with such power before, but what I learned from this is my voice isn't always heard in the way I want it to be. There are some things that I could not do alone, as a parent, to stand up for my child. There was no way I was going to let this beautiful girl down...she was counting on me. So I had to figure out what to do next...

Kindergarten graduation, 2010

I don't remember why she was crying here.

Friday, May 9, 2014

Potential with Disabilities

Last night, my husband and I attended an endowment session at our nearby LDS temple. The session happened to be for deaf and hard of hearing members, so it included translation in ASL. As I watched the sign language interpreter, I was in awe at how beautiful the language is, and amazed at how these indivuduals could receive the same wonderful message as me without hearing a sound. It made me think how astounding it is that people who cannot hear are able to communicate with their hands, and that despite their disability, or inability to hear, they can overcome the barriers of communication through sign, and their potential is great.

So it made me think about other disabilities, and the barriers that are presented with each one. People who are confined to wheelchairs find a way to overcome their challenges and live despite the difficulties they face every day. People who are blind can use Braille to read. I think of Helen Keller and what she had to overcome with her blindness and deafness, and how much she accomplished despite those disabilities. Every time a child is born with a difficulty, or disability, parents work hard with doctors, specialists, therapists, whoever it takes, to help their child reach their full potential in this life--they want their child to go as far as he or she can and achieve the greatness that is possible. Every single person, despite his or her diagnosis, has potential to do great things, because despite the barriers, there are ways to get around them and reach new heights. This idea certainly applies to children on the autism spectrum, though I have found it is much, much harder to unlock that potential.

Let's consider the word "potential." It is defined as "latent qualities or abilities that may be developed and lead to future success or usefulness." Makes a lot of sense. Every person has qualities or abilities that can be developed into future success or usefulness. But what about that word "latent"? It means "existing but not yet developed or manifest; hidden; concealed." Wow. If that doesn't define special needs children, I don't know what does. Every child on the spectrum has hidden, concealed qualities that have not been discovered! How do we find those qualities? One of Julianna's past special education teachers once told me that being a sped teacher is quite like having a huge keyring full of different keys, and you use one key at a time, and if that doesn't work, you go to the next one, and the next one, until you see a little glimmer or hope or progress. It is true, finding the hidden qualities that can lead to success, or even just usefulness, as the definition mentions, is slow, painstaking, tiring work. Some things can take months, years, to master, or even show the slightest bit of progress!

So why do we do this? Why do we work so hard to see just the smallest bit of change? Why do therapists spend months, years, just to see a child learn to tie a shoe? Why do people who have been told they cannot walk spend months, years, in therapy, to learn anyway? Because it's worth it! It unlocks that potential, those qualities, that are hiding deep inside. It's kind of like peeling an onion, one layer at a time, crying as you go, but you don't stop because you know the more you peel away, the more you discover what wasn't there before. Every single child, no matter what the diagnosis, has a potential just waiting to be found.

And maybe that child's success won't be to win a Nobel prize, but it will be to conquer their fear of water, or speak in a loud voice in front of a group, or learn to put on a jacket, or to take a bath without assistance. To me, these things would be just as great as a Nobel prize, because they are some of the things we are working on with Julianna right now. To give up on these things that many kids and parents take for granted would mean I have given up on the possibility that Julianna has potential to live independently someday. I can't give up on her, I have to be there for her every step of the way. Her potential won't be the same as Blake's, or her best friend from school or church, but it will be what she is able to reach in this life. And once we've reached these goals, we will make even more, we will keep pushing her a little more to work even harder than she thinks she can.

The most trying thing about all of this, to me, is that I don't know what her potential is. I don't know how far she will go. All I can do is help her accomplish new tasks that are essential for every day living, and learn new skills and talents that help her feel important and special.

Children with autism have many, many barriers. But I believe these children are born into families with parents who will do anything to help their child climb these barriers and reach heights they never thought possible. The disabilities become abilities with every new skill learned, every goal reached, and to me, that is success.
On her 10th birthday.

Thursday, May 8, 2014

Julianna, Part 6: The Discovering My Voice Phase

Christmas of 2008 was approaching. We had just celebrated Blake's 2nd birthday and Julianna's 5th birthday at my grannie's house with family and had a wonderful time. Just a few days after Julianna's birthday, I got a letter from the regional center, the letter we had been waiting for that would tell us if she would get the much-needed services. Because she now had an official diagnosis of autism, I was positive it would be a yes. I was wrong again. Another denial, this time because she only had a "developmental delay," not a "developmental disability." From the letter written by "Mrs. Macon" (named changed), the program manager of intake:

"Julianna is not suspect of mental retardation, nor is she suspect of the full diagnostic condition of autism...The school felt it necessary to defer Julianna's diagnosis of autism, as there is some disparity between perceptions of the degree to which Julianna is functioning on the autism spectrum. This is exactly why Julianna was found ineligible for regional center services."

I was beyond upset. Why was it so hard to get these services that everyone else said she should qualify for? I called this Mrs. Macon and had a nice talk with her, crying on the phone, probably yelling at one point. She would not budge on her decision, but said I could appeal if I followed the enclosed paperwork. I had the school district psychologist write her a letter, explaining how Julianna should qualify, even giving the exact diagnostic codes and behaviors she displayed. That didn't help either. I felt so hopeless once again. Some of my friends with special needs children were getting all the services and therapy through the regional center and were seeing great progress. I was grateful Julianna could be in a wonderful preschool program with therapies there, but I knew the only way Julianna would potty train is if she got the services from the regional center.

Up until this point, I felt like I had gotten what Julianna needed. The school district was more than helpful. Her insurance was providing additional occupational therapy at a great office, and I would take her there once a week, hoping that it would encourage progress in many areas, including potty training. But getting denied twice from an organization that is supposed to stand by their motto to serve all individuals with disabilities just did not sit well with me. So I decided it was time to act. I was going to appeal their decision. I was going to use my voice to help my child, because if I didn't, no one else would.

Julianna with her wonderful occupational therapist
I sent in the paperwork, and was told to come back February 25th, 2009, for a "mediation" and then March 12 for the "hearing." So I made the necessary preparations, arranged babysitting for my kids, dressed the part, and arrived at the regional center on the 25th, nervous as ever. I was mostly worried that Mrs. Macon would be there, and I wasn't ready to face her in person. The regional center reps just asked a lot of questions about why I didn't agree with their decision, and I was able to answer them the best that I could. It's interesting how the words just come when you are speaking out for your child. This was the first time I had ever had to stand up to anyone to get my child help, and amazingly, it went just fine. The hearing was much the same thing, and after proving my case successfully, they agreed to have Julianna evaluated by one of their own psychologists on May 4. Appealing their decision was the right thing to do. I was confident that this psychologist would see the real Julianna and give her the services after trying for 18 months.

We got our free diapers delivered to our house when she turned 5! I was so excited about this that I took a picture.
Before the big day, I had Julianna meet with a neurologist to get a diagnosis of autism from him. I told him I was seeking regional center services, and after talking with me, and observing her, he did give her the diagnosis, on the mild side, and I made sure to bring this with me to the regional center evaluation.

The day of the assessment came, and I went to the regional center with Julianna. My mom was there to support me in this very important day. I tried my best to make sure she was at her worst behavior, because I thought that would only help me get services! But of course during the lengthy 2-hour evaluation, she was a perfect angel. She was able to complete most of the little puzzles and games he had her do. I told him all about her behaviors, tantrums, need to potty train, etc. But when it was all said and done, he walked us out to the waiting room where my mom was, and told me that Julianna did not meet criteria for the regional center, that she only had PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) and she would be fine with continued special education and therapy. He also believed she had a visual motor problem, and recommended vision therapy. As far as the potty training, to seek behavior analysis and sensory integration interventions. He even told me I was very lucky that Julianna would have a bright future and catch up, that most children serviced by the regional center were not so lucky.

So after all my efforts to use my voice and fight for my child, all I got was a new diagnosis for Julianna, a diagnosis that meant she had a brighter future than I previously thought. I even remember the drive home that day, feeling like I was on a cloud, so happy that she would be fine, she would be fine. I didn't need their help--my child wasn't one of the more severe kids that needed their help. But this still didn't solve the problem of potty training. And she was approaching kindergarten very soon. Those costly therapists for potty training only came from the regional center, unless there was another way.

Before she graduated from preschool, we had one more IEP meeting, called the "kindergarten transition." At this meeting, I felt it was important to write a letter detailing Julianna's entire history from birth, and to list some goals I wanted for her in the coming school year. They also reviewed the report by the regional center psychologist and deemed it "science fiction." They were outraged that she would be denied a second time, and had no idea what to do next. But this meeting was bittersweet, because it would be the last one I would have with her wonderful preschool teachers. I was nervous for her to start kindergarten and wished preschool would never end! But it did, and what a year kindergarten was... NEXT time you will hear about the infamous "Mrs. Fox." My problems were not over in the least....good thing I had just discovered I had a voice, because I wasn't done using it...

Julianna at her preschool graduation, 2009

Tuesday, May 6, 2014

Resources for Special Needs Children and their Families

When your child is diagnosed with a disability, or even before your child is diagnosed, it is very normal to feel lost and alone. Some pediatricians will give you great help, but most won't, because they don't even know all the resources available to parents. Now that I'm a little further along this journey, I thought it would be a good idea to list some resources that I think are essential in helping you along this path. Most of them should be available in your area.

1. Your child's pediatrician. This is an obvious one, but an important one. Don't be afraid to talk to your pediatrician about your concerns. They just might know where to send your child for more help. In the case of all three of my kids, our pediatrician has been the one who has listened over the years, and has never hesitated to give services that I want for them. If your pediatrician doesn't want to diagnose, but you know something is wrong, don't be afraid to insist on getting more help. You are the parent, you are the advocate.

2. Your local regional center.  This invaluable resource provides early start intervention programs and other therapies and services as your child grows. To find out how to contact your local regional center, go to google, type the name of your county + regional center + disabilities. This will most likely take you right to the page of your regional center. I cannot express enough how much the regional center will help you! They provide services in the home, free evaluations and assessments, respite care (babysitting/break time!) and help to guide you along your journey. And if you are denied services, DO NOT GIVE UP! Appeal, call, bug them, email them, pester them! I had to apply 4 times to get Julianna services. I will talk more about this in upcoming posts.

3. Your local school district. When your child turns 3, the school district is obligated to help your child. They will evaulate and assess, and then provide therapy or school programs. You will write an IEP (Individualized Education Plan) with a team of people who will be helping your child, and set goals that your child can reach each year. Now the school district won't always see things your way, but remember, you are the parent. You have the last say. If you don't agree with their plan, don't sign the IEP. Make sure you are ready to attend every IEP with your own goals in mind, and know your rights. It can be very intimidating to attend a meeting with professionals, some of which don't want to provide services because of the lack of funding. This is no excuse--make sure your child is receiving the appropriate services. Talk to teachers, other parents, and find out what those services are for your own child, and fight for them.

4. Medical or medicaid. Once your child has an official diagnosis, you can contact your local medi-cal or medicaid office and sign up for health coverage for free. Now you might be thinking, why would I do that? I already have health coverage for my child. Then make medical a secondary, because what is provides is free visits to any doctor or specialist, free prescriptions, basically free anything. It is not based on your income at all. You just need your doctor to sign a form that you can download from your local medicaid office's website, and fill out some paperwork. Totally worth it. And it's also the first step to getting this next service...

5. In-home support services. Medical or medicaid is the first step to securing IHSS, a government program that pays you to take care of your child, essentially. When your child gets behind in self-help skills, like dressing, eating, bathing, grooming, etc, you can him or her sign up for this program. Search for IHSS in your county and contact them; they will guide you through the entire process. Someone will come to evaluate your child and determine how many hours a month your child needs help, and then pay you per hour. You fill out time sheets and mail them in, and get the money directly deposited into your checking account. The pay is usually based on income--they have a share of cost. But if your child has regional center services, the regional center can fill out a waiver so there is no share of cost. All the more reason to get those regional center services! Julianna has had IHSS for almost 2 years (I wish I had heard about it sooner) and her hours are winding down. But to me this only means that she is catching up, so I am happy about that. Definitely worth the time and effort.

6. Free diapers and incontinence supplies. Now don't get all excited just yet, those of you with babies or toddlers! Your child can get free diapers through insurance delivered directly to your home as long as he or she is over the age of 5. Just ask your pediatrician about it. Unfortunately, Julianna was over the age of 5 and not potty trained, but I was so grateful to be getting high quality supplies delivered to my door for free until she did.

7. Non-profit advocacy groups. If you are having trouble getting services for your child, either in the school district or regional center, there are most likely free advocates that can help you. There were many times I really wish I could have hired a lawyer, but that was just not feasible. I was lucky enough to find great, educated, informed individuals who listened to my concerns and helped me get services. So talk to other parents in your area, or google to find out who might be available where you live.

These are just a few of the basic services that I use or have used. I will be going into more depth about the regional center and school district in my upcoming posts about Julianna, so stay tuned!

Sunday, May 4, 2014

Over the Edge

Yesterday I wrote about how my life is crazy, and it really is. Most days I can handle the crazy, as long as the kids go to bed at a decent hour and I get enough time to myself to breathe and relax. Today I was literally pushed over the edge and lost it, and I think I scared my kids and husband just a little. I couldn't handle the constant noise, fighting, loud laughing, I was done. I shut myself in the office, cried, and now I am going to write about what has pushed me over the edge today. I told you I would tell you how it is, and this is the HONEST truth. I hope you're ready to hear it.

Being a parent of special needs children has highs and lows. The highs come when things are going well, things are progressing, changing, improving. These seem to last for a little while, until I get those feelings again that something needs to change, or until Julianna starts having behaviors that are almost constant, and I don't know what to do. Then we are plunged over that edge, into the depths again, where we feel lost, uncertain, and in need of help. This is how it has been the last couple of weeks. Julianna's behaviors and tantrums have been increasing so much that I am at the end of my rope. She has an incessant urge to ask Blake that new infamous question, "are you still my friend?" about every 5 minutes. If he doesn't answer, she will be thrown into a rage, biting her hands and screaming, and now she will even hit him, hard. Blake is so worn out by her that he doesn't want to answer anymore, and I don't blame him, and now sometimes he's in tears from her hitting him. When it gets to be too much, I just tell her that this is the last time you can ask him today, and I force him to answer so she can move on with her life. This happens every single day. Her tantrums are increasing, and things are just so chaotic. No matter what I do, I can't seem to calm her down. She doesn't want to sleep in her bed, she has to wear long sleeves even when it's hot, and long socks that she pulls up every chance she can get. She has little OCD things that have to be just right, all the time. I just can't handle it anymore.

But it's interesting, because even before it got to this lowest point, I felt inspired to ask my regional center case worker for more therapy, which we will be getting soon. And even more interesting is how I always seem to know just what to do to help her, before things get really bad. A few weeks ago, I was browsing the digital books from our public library, and came across "The Autism Book" by Dr. Robert Sears. I haven't read a book about autism in a very long time, and this was a new one to me, so I thought I'd check it out. I only had time to skim through most of it, but from what I read, I was thoroughly impressed. I took some notes about the biomedical approach, and kept these ideas at the front of my mind. Could I even attempt to do this with Julianna? Am I strong enough to implement this program? Am I willing to put all my hopes into a program that has been proven to work in many children, though not all? Dr. Sears lays it all out for the readers, giving very detailed information. I ordered a copy on Amazon and look forward to getting it this week so I can read more closely.

And then I got that blood test back this past Tuesday, and ever since then my mind has been reeling. A normal blood test. A normal blood test?? This means she has no genetic cause for her symptoms. Dr. Sears explains that autism is often caused by things that are internal if they are not genetic. In other words, if your child does not have a diagnosed genetic cause for the symptoms they are displaying, there is a good chance that having your child participate in his described method will bring about huge changes, even possibly full recovery. His program includes doing the GFCF (Gluten-Free, Casein-Free) diet (casein is dairy) and using specific vitamins and supplements. All natural, but not easy or inexpensive to do in the least.

We did the GF 6 years ago (no dairy free) and I did not see huge changes. Then again, I only did it for 4 months, and I wasn't sure if I was doing it 100%. But I remember how hard it was in the beginning, and then how I started to get a feel for it. So I do have some experience. But the most challenging thing I am facing right now, for Julianna, is this: how much of what she is doing is just Julianna, and how much could actually be caused by what she is eating? I don't even know the answer to this question. It would take a huge leap of faith to even start a program like this, but anything is better than where we are right now. I would rather take a leap than be stuck in the depths, lost and confused.

I am just so amazed at how guided I have been, every step of the way, as I have raised Julianna, and I have no doubt that is because I am prayerful, faithful, and obedient. When I look back at the last few weeks, I asked for help from my case worker before I reached the edge, I read that book, and then a fews days later, I got that blood test result. I did not plan any of this. I simply did what I felt guided to do, and now I have to make a big decision that could either be a great thing for Julianna, or do nothing at all. This is where my faith comes in, I guess. If I feel good about doing something like this, then I just have to trust that it will be the right thing. I will let you all know what I decide, and be sure to share how this new journey goes for our family.

Even amongst all the chaos of my life, I am still given those little promptings that lead me to the right path, the path that takes us up back to that high again. I just hope we can get there again. Until then, I will be here, blogging.

Saturday, May 3, 2014

My Middle Child, and the Time CPS and the Police Came to My Door

Everyone's heard of the middle child syndrome. The child who is forgotten, neglected, not given much attention because he or she happened to be born in the middle. I was the oldest, so I can't really relate. But now that I have my own kids, I am starting to see how the middle child really can be neglected. Especially in my situation, when my oldest is on the autism spectrum, and my youngest has the cleft palate and sees numerous doctors on a regular basis. So for even more reasons, I feel like Blake, my middle child, can suffer from this middle child syndrome, and I am trying hard not to let that happen.

Blake, as I have shared before, was born with mastocytosis, and had a scary first couple of years. But once we got through that, and he no longer had symptoms, he developed normally and even above average, has succeeded in school, and for the most part, I don't have to worry about him, other than the usual stubborn disobedience that most children display. Not having to worry about him though means I might often forget that he has his own concerns and problems, and I have to make time to listen to him so I can help him with those. However, there is one thing that still sets him apart, and that is his spots, that are starting to fade as the years go by. There is one particular instance where these spots got him into trouble.

Before Blake entered kindergarten, I made sure to note on the health forms that he had mastocytosis, and described the spots as best I could. I didn't want teachers to worry about them, because some actually look like bruises, especially the ones on his arms and legs that are often showing. The last thing I would want is for his teacher to think I am physically abusing him! So his first year in school went just fine, until the very last day, when they were having a party, and some moms were volunteering in the classroom. After school, I got a call from his teacher, and she told me that to be on the lookout, that I might have been reported by one of the parents. I immediately thought they must have called because they thought his spots looked like bruises! My worst fears were coming true! His teacher said she tried to convince the moms otherwise, but they didn't seem to care.

Not even 2 hours after school, I get a knock at my door. It's a police officer, with another man who introduced himself as a Child Protective Services agent. They asked to come inside, and of course I did so. Julianna was upstairs working with her ABA therapist. I suddenly felt very vulnerable, and scared. I had no idea what they were going to ask or accuse me of. Luckily I had cleaned up the house that morning, and gotten dressed! The police officer told me that Blake was reported to having been abused in some way. I went into defense mode, explaining everything about the symptoms of mastocytosis, showed him some spots on Blake's arms and legs and stomach, told him I had all of this documented with the school and his teacher was aware.

After sharing my whole story, he then took out his phone and looked up mastocytosis. He actually wanted to make sure I wasn't lying! Did he really think I could make up a whole medical condition?? Of course he found it to be true. And then he told me why they were really over there: the parent who reporting him said he thought Blake had rope burns on his neck. ROPE BURNS? I then looked at his neck, and realized what they were talking about. Just a few days before this, Blake had fallen down into a rose bush and scraped the side of his neck. It wasn't too bad, but we put some bandaids on it, and it was healed enough to remove the bandaids for the last day of school. Oh how I wish I had not taken off those bandaids. After explaining this to the police officer, he sided with my story, and left the house.

Now it was the CPS officer's turn, and he went through his long list of questions regarding parenting, because he had to make sure I really wasn't abusing my child. And because Julianna was upstairs, he had to go take a look at her as well to make sure she was okay. I told him she was getting therapy, so he asked a little bit more about her diagnosis, and then told me he used to work for the regional center. Long story short, we talked for a good while, and he was able to give me a list of some great resources that usually aren't available to parents. He apologized for having to go to such extreme measures, but they do have to take every call seriously. Because of Blake's health condition, he decided to make a note on his records of the symptoms, just in case anyone ever did call about child abuse in the future. So I guess it was a good thing the police and CPS came, because now all they would do is look at Blake's chart and see that the supposed "abuse" was really from a health condition. And I got some new information to help Julianna.

The funniest part of this whole story is that the entire time I was inside talking to the officers, there were many policemen hiding in the perimeter of our house. My neighbor told me this later that day and were very worried about us. This wasn't the first time the police had come to our home for Blake. When he was 2, he locked himself in my bedroom and I could not get it open. I finally had no choice but to call 911, and they broke down the door to get in.

To say my life is crazy is an understatement. But our crazy has become normal to me, and I wouldn't have it any other way. I love my middle child Blake so much, spots and all. Being a parent is a wonderful thing.