Monday, October 30, 2006


Soren is very lucky to have a lovely caregiver named Aubrey. And Aubrey has a lovely sister named Ashley. Ashley and some of her friends decided it would be fun to throw an adult prom, making up for all the crappy proms we all had as teenagers.

And then they asked me if the proceeds of the prom could go to Soren's Stem Cell Fund. I was overwhelmed and flattered and said yes.

So, if you are available this Friday, come to

Hosts: Ashley, Aubrey, Nicole, and Cara
Location: Holiday Inn /Burbank Media Center
150 E Angeleno, Burbank, CA
When: Friday, November 3, 7:00pm to 11:59pm
To buy tickets: contact Ashley at (818) 381-2097 or Aubrey at (619) 921-2578 /

They can only sell 115 tickets and they are going fast so the sooner you get them the better.

Doors open at 7pm now and a limited open bar (beer & wine) will be available to guests until the money runs the earlier you get there, the more free drinks you get!

Hotel rooms are available to our party guests at a discounted rate of $99 per room (normally $140) so if you plan to book a room, mention you are going to the PROM fundraiser there that night.

Tickets are $50 a couple or $60 at the door
Dress code is strictly enforced: Gowns and Suits

The Holiday Inn has a lovely windowed room at the top of the building where you will get a great view of the lights of Burbank. (Seriously, it's pretty.) Besides the free beer and wine between 7-8, there will also be a cash bar. There will be snacks, though dinner is not included, so eat beforehand. There will be corsages and boutonnières, cheesy photos, and dancing!

I know from Aubrey that they have paid all of their costs and now everything they make goes to Soren. There is limited space, so if you want to get in, call and make a reservation! Aaron and I will be there workin' our fine moves on the dance floor. Come and join us!


Friday, October 27, 2006


Just a little update for everyone. Soren is doing well at school. They work him hard and he is building up stamina. He eats the cafeteria food there--they know how to prepare it for kids like Soren. And he loves it. It's great for me cause he's venturing out past his usual avocado!

Next, we got the exact same tricycle you saw in the previous post on eBay! Totally got it for a song. Like all special needs products, if we bought it new, it wouldn't come cheap. But this is an older model that fits Soren well. I outbid someone at the last second and now Soren can ride on the weekends for more practice.

I must admit I did feel some guilt outbidding that person. They were, most likely, also a parent of a special needs kid. But that's the way of eBay, I guess, right?

Soren had an appointment with his ophthalmologist yesterday. His right eye is still turning in quite a bit. So we started patching his left eye for 4 hours a day for the next 5 weeks to see if we can strengthen the muscles in his right eye. If that works, we may move up to corrective glasses that can then further strengthen his eye.

If all that DOESN'T work, we may have to consider surgery. I'll keep you posted.

AND in 4 1/2 weeks, we are going back to the DR for Soren's 3rd stem cell treatment!!!! We are very excited and hopeful.


Tuesday, October 10, 2006

IEP Recommendations

I have numbers of friends who are about to go through the IEP Process. And I'm hoping that other parents of special needs kids end up stumbling upon this sight and get helpful information.

So I've decided to put my list of recommendations for preparing for the IEP.

1. Take a class in preparing for the IEP. In California, the Regional Center offers these. It's one night a week for 4 or 5 weeks. But it's worth it because it starts you thinking about things you don't wish to think about.

2. Buy a book. The Complete IEP Guide is one. Buy it. Read it. It may help.

3. Put together your BINDER. Now you don't have to do this last minute like I did. In fact, I recommend that you don't. But with special needs kids there are LOTS of reports and assessments from therapists and doctors. Gather these. Make up a medical history for your child. On there put meds that they have taken and ones they are currently taking. List hospital visits. Make a list of Key Contacts-doctors, therapists, parents.

TABLE OF CONTENTS: This binder ends up BIG, so make a table of contents so you know where your stuff is. I swiped mine from Julie. The headings were Key Information, Medical Information, Federal/State Services, Educational Reports, Therapy Reports.

COVER SHEETS for each section. And if you're feeling fancy (which I was) cover sheets for your reports, etc. It makes things easier to find.

COLOR CODED SLEEVES: Instead of three-hole punching everything (which will drive you mad) get color coded sleeves you can just slip the paperwork in. Office Depot has packages of them. One of Julie's totally awesome ideas!

MAKE COPIES of all your paperwork and put them in the sleeves as well. Have them on hand to give to the IEP Team. Even if you think you've given everyone everything thing, there's always someone who didn't get something. Have your originals. But also have your copies.

And then put in PICTURES!!!! Get the picture pages. Or do a composite on the computer if you're that savvy. Remember, this is about YOUR CHILD, not just some faceless person with a diagnosis.

Julie hadn't done pictures when I saw her binder and I told her about the great response the team had to Soren's. So not only did Julie put in photos, so put together the lovliest handout about Camille I've ever seen. And I am SO going to do this for Soren's next IEP. Along side photos, Julie listed HOPES AND DREAMS they have for Camille. She also described Camille's PERSONALITY. She listed Camille's STRENGTHS, CHALLENGES, and CONSIDERATIONS that should be taken on her behalf.

At the IEP, the parents should be given the opportunity to say what their goals are for their child. Julie's handout idea totally encapsulates this. Brilliant!

4. In putting the binder together, don't forget that you should keep all your correspondence with stage agencies and school districts in writing. This means, if you email someone, you should print out that email and file it providing proof of this correspondence. If you speak on the phone, send a letter restating what was spoken about. I know it's a pain, but it can save your back.

5. Pull together your team. The school district has theirs. Make sure you have people backing you up as well. It's good to have others who have spent a long period of time watching your child grow and change. But keep in mind that you have to inform the school district of people you are bringing along.

6. GET AN ADVOCATE!!!!! The IEP can be very emotional. You may not be thinking clearly enough to ask all the key questions. It's good to have someone who is not emotionally attached and still has your child's best interest at heart. And if you can get someone who specializes in your child's medical issue, even better. Our advocate specialized in kids with brain injuries, so she knew the ins and outs of that subject matter.

7. DON'T SIGN THE IEP!!!!! If they pressure you, stand your ground. You should be given a copy that you can look over for a few days. Even if you get EVERYTHING you think you wanted. Our IEP lasted 2 1/2 hours. My friends' lasted 5 hours! Everyone is a little bleary eyed after that. We really did get everything we wanted, but we took the IEP home and found a few minor errors. Would they have affected the outcome of Soren's IEP? No. But when you are signing something that is legally binding everything should be in order.

8. Move to Glendale so you can be in the GUSD cause they were the BEST.

Okay, I know this isn't possible for everyone. However, I DO have a friend who recently moved from their house in Silverlake to an apartment in Glendale JUST so they could get into the same class that Soren is in. But for the rest of you, really look into the schools that would be appropriate for your child. Take a tour, meet teachers, ask questions. It's your right as a tax payer and as a parent.

I hope this helps. And feel free to ask me questions if I haven't covered something.


Saturday, October 07, 2006


Sorry I haven't written in a while. We were preparing for a VERY important meeting for Soren called the IEP, which happened last Friday. And this is such a HUGE deal that this blog is going to be equally HUGE. So get yourself a snack and a drink (preferably one with alcohol cause you're gonna need it) and get ready for a long read.

Alright, you got your wine and cheese? Good.

What is an IEP you ask? It stands for Individualized Education Plan. When a child with special needs turns three, they go into the public school system and can start going to a special needs preschool. This is true whether the child's needs be something as "simple" as speech delays or more "complicated" like Autism, Down's, or Seizure disorders.

But I've gotten ahead of myself. PRIOR to turning three, in California, a child with special needs is assessed by a state-funded program called the Regional Center. Once assessed, they determine what therapies they will fund for this child. Soren had LOTS of needs, so he got Physical Therapy, Occupational Therapy, Speech Therapy, Feeding Therapy, Vision Therapy, and his preschool at UCLA all funded by the Regional Center. They also have supplied us with equipment for Soren such as a bath seat, a stander, a stroller, and a feeding chair. And the all-important Respite Care, which has kept us from going totally insane. We feel truly lucky to have gotten such wonderful services.

Once a child turns three, these services (minus Feeding Therapy and Respite Care) are taken over by the school system. But it's not as simple as just having the services go from one entity to another. It's a huge process. Soren, once again, had to be assessed. This time by a TEAM of people from the school district. For us this means GUSD (Glendale Unified School District). They had a separate OT, PT, Vision Therapist, Speech Therapist, Special Ed teacher, Regular Ed teacher, nurse, and psychologist observe what Soren could and could not do. Based off that assessment, they would offer (or not offer) certain services.

First Soren and I went to a 2 hour assessment with the PT and OT. I provided them with reports from his regular OT and PT, so they could see what progress Soren had made, cause you can't really find everything out about a child in just 2 hours. Then a couple weeks later he had another assessment by the rest of the team. This took another 2 1/2 hours. I again provided them with doctors reports and teacher/therapist assessments so they would know what has been going on with Soren the past 3 years.

And while the therapists and teachers worked with Soren, I was basically given an oral SAT about his abilities. Questions like, "Does he respond when his name is called? Does he know not to touch a hot oven? Does he pick up his toys? Does he help with household chores? Does he share toys when asked? Does he play well with others?" were asked. The bummer for me was that a lot of those answers were no. It really wears you down. But they've got to ask them.

The GREAT thing was that everyone on the GUSD team was FANTASTIC! They connected with Soren and really cared about what was best for him. They were very interested in his program at UCLA. In that program, they use what's called Assistive Technology. Large buttons which, when pressed, give voice responses. For instance, during snack, Soren has one button that says "More cracker, please," when pressed. And another that says, "I'd like a drink." One of the teachers recommended adding their Assistive Technology Specialist to the team. That way she could come to UCLA and see what they had and further assess Soren's needs so that GUSD could provide for him. While it was a long meeting, it went well and I was feeling very confident that we would get what he needed.

However, we went to our Epilepsy Support Group a couple weeks before the IEP meeting was to happen (where everyone sits down and discusses and PUTS IN WRITING what will be done for a child). A discussion came up about IEPs and how horrible they can be. The matters discussed and written become legally binding once the parents sign the document. If you then want to change something, there has to be an amendment and sometimes if the parties disagree, you have to go through Due Process.

Aaron and I were the only parents who had not gone through the IEP. And the horror stories that we heard that day put the fear of God in us. Tales of the IEP paperwork not being given to a parent at the end of a meeting and then changed. Parents are to be given a copy, even if they don't sign it. In fact, it's recommended that you DON'T sign it and take the time to look it over to make sure everything's cool. But this parent was NOT given a copy and someone from the school district took it and changed things to basically slander that child and cut her services. They had to take it to court and the parent won. But what a pain in the ass!

Other parents said we should not enter the room without an advocate. That the school district did not necessarily have the child's best interests at heart--they have budgetary concerns and their own agendas to tend to. We just couldn't imagine this to be true. And I, having met the team, couldn't see them doing such a thing to Soren. But the parents all told us not to be naive.

So Aaron and I were totally freaked! We suddenly feared that therapies would be cut. And our biggest fear was that Soren would be put in a class that wasn't challenging or stimulating enough. There were really two options of schools for Soren. The first is a preschool called Cloud. I had toured there and was very impressed. The classrooms were all wheelchair accessible and arranged similar to his class at UCLA. But in all the classes I observed, there were no children as delayed as Soren. There were kids with Down's, Autism, and speech delays. But all of the kids could move and do the class activities on their own--without major assistance. Soren really needed more help then I thought these classes could provide. While the kinds of kids in the class were the same as at UCLA, they didn't have positional equipment or the Assistive Technology I was talking about. Now, technically, if this WAS the best place for Soren, the school district would have to provide all that equipment.

But there was the second option. A school called College View. Now College View is a special needs school--from preschool to adult. It has all the equipment Soren would need because it is a school for children with severe to profound disabilities. It is filled with lovely, amazing kids. But it's heartbreaking to realize that your child is, in fact, one of these kids. At my first tour there, I was taken to a class with kids of varying ages, all of whom are very disabled. They cannot walk, talk, feed themselves--just like Soren. BUT I knew in my heart that this was not the right place for him. Soren NEEDS stimulation. Yes, at UCLA he was one of the most disabled kids in his class. But he thrived there because he loves to watch other kids. He listens to the hubbub. I knew that for Soren to progress, he would need to be in a different class. I got his lead teacher at UCLA to write a letter backing me up on what Soren needed in a school setting. And even though it didn't seem like the best match, I was determined to get Soren into Cloud. I figured we would fight for a one-on-one aid (or shadow) to help him at school. And I would get them to bring in the necessary equipment for Soren.

Then I was speaking with Soren's regular OT and PT. They were really pushing me towards College View. I told them my fears and they informed me that there was another class that Soren would be PERFECT for. The teacher is tough, challenging, and gets results. So I went and observed this class. It had kids with mixed disabilities, like UCLA. Some non-ambulatory kids along with kids who could walk. Soren would still be the most delayed, but I could see this teacher pushing him and helping him grow. THIS was now where I wanted him. But I feared that the only way I would get this was with the help of an advocate.

So after our frightening Epilepsy Support Group meeting, I emailed an advocate I had taken a class from at the Epilepsy Foundation. She had a possible conflict on the date of Soren's IEP, so I wrote a letter to GUSD asking to reschedule. Of course, the woman who does the schedule was on vacation until the next week. When I finally got in touch with her, the soonest date we could get was at the end of November!

Now, when I child turns three, the Regional Center is supposed to cut off the child's services at the end of that month. However, they are supposed to give you 30 days notice of this. This didn't happen, so we had an extension through the end of October. But with an IEP date in November, Soren would lose his therapy services, which was something we really didn't want to happen. I called our advocate to give her this update and FORTUNATELY, her other client had canceled on Soren's original IEP date so we were able to keep things as scheduled.

However, this meant that I had less than a week to get my act together. I had taken another class on preparing for the IEP and they recommend putting together a binder of all the child's reports and assessments. This is A LOT of paperwork. And I had only taken a tiny, pathetic stab at this. So, I went to my friend Julie and looked at her daughter's notebook. Of course it was GORGEOUS and the best organized thing ever! Cover sheets, colored charts, color-coded sleeves. I had my work cut out for me!

So the next week, I was copying, arranging, making up charts. I needed to request Soren's hearing report that was missing, Get a letter of equipment used at UCLA. Then I added pictures. When Soren graduated from UCLA they gave us a lovely photo album from his time there plus extra photos. I got binder photo pages and did an overview of Soren's activities so the team could see him "in action" with his peers. I put a big picture of our beautiful boy on the front, so nobody could forget who we were there for. I had numerous calls and email exchanges with our advocate. She read through all of Soren's information, did her own research into his diagnosis, and drew up an outline on what we wanted out of the IEP.

Now, while the school district gets to bring in their team to plead their case, we also get to bring in a team for our side to plead ours. This was myself, Aaron, our advocate, Soren's Vision Therapist, and Soren's OT. And it was GREAT having them there as backup confirming what Soren is like.

The day of the IEP came. I was nervous as hell. After the tales I'd been told, I feared being ambushed. And I'll just tell you right now, NOBODY on the GUSD Team set out to do that!!!! In fact, they all were WONDERFUL!!! I was relieved that my instincts were right and that everyone really did have Soren's best interests at heart. I understand that this isn't how it always goes. But we were lucky and all sides were working to get Soren what he needed. Still, we were REALLY GLAD we had our advocate. She was worth every dime!

The IEP meeting began with the GUSD Team going through Soren's scores from the standardized test I had taken. Whew, this was a hard thing to sit through. It's tough hearing that your child is developmentally only a 4 month old. In one thing, he was only a 1 month old! But then in others, he was an 18 month old, so we did have some variety. Once these results are read, everyone has to agree on what area or areas a child qualifies for Special Education under. Now we wanted him listed under Vision Impairment, Orthopedic Impairment, and Other Health Impaired. The GUSD Team wanted to add that he qualified under Mental Retardation.

And this is one of the places where our advocate came in handy. I stated that we didn't want that on Soren's record. Instead, we wanted him to be listed as having Global Developmental Delay. I gotta say, I NEVER expected to have to have a 10 minute conversation about this regarding my child. But our advocate really made our case, bringing up that Soren's test scores were varied--some at 4 months, some at 18 months, some at 12 months. With MR (Mental Retardation for those of you not in the know) test scores tend to be more flat-lined. She also brought up something called Apraxia. This is where the brain knows what it wants but can't get the communication through to the body to follow through. It can occur in people who have had strokes. Or seizures! Her suggestion was that Soren CAN make progress, it's just going to take more time because of his long battle with seizures. Everyone agreed to eliminating the MR category and listing him with global developmental delay.

The meeting then continued for 2 1/2 hours! All while we were sitting in little preschool chairs. Ouch!

The great news is that Soren was able to keep his current level of OT and PT with his longtime therapists off site. He would have equal Vision Therapy provided at school. Only his Speech Therapy was reduced--and only by a half hour. And, finally, he got placed in the College View class with the tough, results-oriented teacher! He would have the equipment he needed. The Assistive Technology Specialist was AMAZING and had great ideas for equipment to help Soren. Once we have an approved wheelchair, they will bus Soren to and from school and his therapies. And our advocate kept bringing up little details that we, as parents, would have NEVER known about and got things in writing (which is essential) for us.

AND they loved my pictures. I had even put in pictures of Soren in his equipment--the Vision Box and Universal Exercise Unit at Bright Minds. His new principal loved those two pieces and is trying to figure out how to raise funds to get them. I'm actually thinking of spear-heading getting the UEU for the school. I've dreamt of having one in our house, but we just don't have the room. Plus at school, it would benefit SO many kids. And we wouldn't have to drive to Brentwood to get Soren the Intensive Therapy. But it's a big ticket item--$5,000! So don't be surprised when I start hittin' y'all up for money again!

So after another week of my scrambling to get all of Soren's stuff prepared for school (doctor's forms, medications, earthquake supplies), Soren will be starting school on Tuesday!!!!!! It's a 5 day a week program from 9-2:30! With both my kids in school, I'm suddenly going to get a little of my life back (especially once Soren starts riding the bus)! We are thrilled, amazed, and appreciative of everyone on the GUSD Team, of Julie, of Soren's doctor's, teachers, and therapists who all helped us get the very best for this awesome boy!

And just think, we get to do it AGAIN NEXT YEAR!!!!! (AAAHHHHHHHH!!!!!)