Happy Halloween!!

Best wishes for Tricks and Treats this Halloween!

Love, The G5 Family

Prayers Answered

I can totally say we have had a prayer answered, yes Mark a prayer ;-P

Jamie is our new helper on Wednesday's. We hired her to come regularly after using her to watch Kay during Javi's IEP. She is a total angel. She is fantastic with our kids and a wonderful helper and just a fantastic person in general. We are so lucky to have her. Yay! I will finally get some time in to volunteer in Ethan's class and work on other projects I haven't had the time to commit to. Dare I say, I may even squeeze in some time to myself once in a while?!



Ethan had his Halloween party and parade on Wednesday. I must say, it was nice to be able to give him my full attention that day. He looked adorable in his costume.



All of his friends were absolutely adorable too. We had such a great time.

Javi didn't get to dress up for school, but he tried on his costume and looked very handsome in it.

We were finally able to carve our pumpkins too.  They had been sitting in our fridge all month.  Jamie scraped them for me, since that is the part I hate.  Sensory issue?  No, I think it's just gross and it smells funny.  Ok, so maybe it is a sensory thing ;)

Three cheers for Jamie!  She is awesome.  So wonderful to have help available.  Makes me wonder why I waited so long to have someone help out.

So, if anyone is looking for respite in SD, Jamie is your woman.  But can't have her on Wednesday ;)

Sum it up...

Javi update on the school front...

Contacted Javi's teacher from last year, just at random to say hi. As it turns out, the ASD Program Specialist contacted her yesterday to ask if she would be the ASD consultant to observe Javi. We are thrilled with this, since she would know Javi the best in a school setting since she had him for two years in a row.

Also, just as I was formulating a response to her email....the Education Consultant I had requested through the Regional Center contacted us. Got him up to speed on the situation and now he'll be scheduling an observation too and attending the second IEP meeting.

Still feel that it may be a mismatched class setting for him. Javi gets really agitated when you ask him questions about school. He did tell me that the kids are teasing him and copying him during recess and lunch. He said "Yep, I'm still playing alone." Poor baby :( Breaks my heart to keep sending him when I know he is not happy.

Ethan has his Halloween parade and party tomorrow. We are making homemade popcorn balls to pass out to kids in class. The boys LOVED making popcorn on the stove tonight. They couldn't believe that you could actually make popcorn with out a microwave :) It really tastes a lot better than in the microwave. Javi said "Wow Mom, this tastes like the movie popcorn, but better." We just put a teeny bit of salt, no butter. Javi, Ethan and Daddy shoveled handfuls of it in their mouths. I'll probably have to make more popcorn before I can make the balls.

Kaylee had PT today. Ms. Bonnie, her regular PT is back, YAY!! She was happy with the progress that Kaylee has made while she was gone (a month). She did say we will determine whether or not her regular tennies will be enough support for her or if she will need orthotics. She is still pronating her feet. She said it's a tough call because Kaylee is not technically walking yet. She mostly side steps when she cruises. She did agree that it would be a good idea to look in to a pediatric posterior walkers since the doc said that the Topamax may inhibit her ability to build muscle tone at this dose. Since she already has low tone, it makes it tough. We are going to see if we can possibly check out a walker from the CP Library to see how well she does with it before we order one. Heh...maybe we can convince my grandma walkers are cool if Kaylee has one :)

Well, that's all for now. Have to get to making popcorn balls :)

Dr. Genes Visit

Before we said our good bye's to Grandma Audrey, we went to our appointment with Dr. Genes. It was a very long wait because their computer system was down. They had said they would call us when it was our turn (they usually hand out pagers, it's such a large waiting room), but apparently the pagers don't work with the computer system down.

We waited...and waited and waited some more. Finally, a woman approached us and asked if I was Kaylee's mom. I don't know how she knew it was us, since the waiting room had about 50-60 people in it. It was the doctor's assistant, whom we had never met, since it was the first time we had seen Dr. Genes. I guess they had tried calling our house and didn't get an answer. With all the chaos in the waiting room, I guess she just decided to do a sweep to see if there was anyone that looked like a Kaylee in the room that was her age :) They said they had also tried calling us 3x's in the waiting room, but we never heard our name. We were only sitting about 10 feet from the reception desk, so you think we would have heard.

After about an hour and twenty minute wait we were finally taken back to an exam room.

Next, we had a young doc come and talk to us. She was the resident for Dr. Genes. She was a very sweet woman who was very smitten with Kaylee, especially since Kaylee was all dressed up in her fancy outfit complete with her red beret. She gave Ethan a Halloween treat while we discussed our background. We went through the usual questions about pregnancy, birth, family history, etc. Then Dr. Genes came in to examine Kaylee. He practically went over her with a magnifying glass. He was so thorough. He then did a Wood's Lamp test with the help of Dr. Resident who had to go borrow the Wood's Lamp from the ED. Just as we thought, the exam revealed no shagreen patches or hypo-pigmentation.

Dr. Genes wants the entire family to get tested. He said that since her mutation is one that they have never seen before, they will want to do a comparative study with our genes.

So, now the long process of getting it approved through insurance...

Good byes to Grandma Audrey

Today was the service for Great-Grandma Audrey.  The kids and I had to miss the morning service to go to an appointment with Dr. Genes.  Unfortunately, we couldn't cancel the appointment since we have waited months for the appointment.

We did manage to make it to the lunch that was given by the Relief Society at the LDS church after the service.  I heard it was a very moving ceremony.  

Here is a picture of Kaylee with Daddy looking at the photo collage of Grandma and family.  She was pointing to the photos and saying "OOK" which is her way to say look.  Sorry, it's a little blurry since it was taken with my phone.

We are so glad that we were able to visit with the family.  We also presented Grandpa Jim with his "hug" card. Here's a pic of part of it. We made a little cover for it with a pic of the kids on it. The "hug" was a cut out of all of our hands including mine and Mark's from largest to smallest. Grandpa said he wanted to wear it home :)



We look forward to GG and Grandpa Jim visiting again. Hopefully, it will be under happier circumstances next time.

God Bless Grandma Audrey. Now she can walk with Grandpa Alan and play fetch with their beloved doggies. 'Til we see you again in heaven.

Javi's Halloween Haunt

We had fun at Sea Scare at the Cabrillo Beach Marine Museum near my mom's house in San Pedro.  We went with my Aunt Marcy.  

Javi and Marcy with Pennywise the Clown

The Zombie Meat Packer Company

Making a lantern fish with glow in the dark paint.

At the entrance to Port Town the ghost Pirate Town.

It was cute.  I have to admit, being at that beach at night was a little erie.  They have scary old trees and you can just feel the thickness in the air.  It's an old fisherman's town and the Port of Los Angles.  All the movies that you see in Hollywood that have the port of LA, that's San Pedro.  I have a lot of memories there.  I actually used to take field trips to the marine museum in elementary school when I was Javi's age.  

We just took Javi, since we thought it would be too scary for the little ones and they had already gone to sleep, since we had a long day of moving.

We had a nice visit with the family and did manage to get a good amount of stuff done even though I had all three kids in tow most of the weekend.  I did manage to escape and get some of the moving with only Ethan with me.  My mom is almost moved out.  There are only a few things left at the apartment and my mom can handle the rest on her own.  

I'm glad that we could go up there and help out, even if we aren't that much help.  We do what we can, but it's tough with all three kiddos.

When it rains...

It pours!  Wow, can't believe that the weekend is already here.  This week has been such a whirlwind with everything that's gone on this week.

Grandma Audrey is still hanging on.  We can't believe that she has hung on this long with what the doctors and hospice had said on Tuesday.  Bless her heart, just hoping she will remain peaceful and is not in any pain.  Please keep her in your prayers.

Still no resolution with Javi's IEP.  Not that we were expecting one this quickly, but just thought I would update.  We are still planning on contacting the program specialist to see if we can possibly switch schools and have him placed in another NSH class, but we are trying to determine the best and quickest way to get him out of the class with minimal mediation.  As anyone who has dealt with difficult IEP matters knows, you have to be very very careful how you word things.  One wrong move, and mediation can drag out for months.  We are hoping that we can go about it from two angles:  

A) Javi technically lives with his dad now and has for the last year, though we share joint custody.  My address has been listed as his home address since he began school. Previously, there was no real benefit to changing it, since we had been at the same school for three years with out any issues.  The reason we didn't change it last year was because we thought it might be a good thing for Javi.  His current school is one of the newer schools in our district, so it has state of the art facilities, computer labs, classrooms, etc.  

Long story, short, if we were to change the address, that would put him at a different home school and would change the location to the nearest NSH program. So, by default this may change his placement.

B) It's obvious in so many ways that this is a shear mismatch of student to teacher and parent to teacher.  I don't think any mediation will do it at this point.  Javi has been stamped with the "problem child" stamp and frankly, I think any further intervention may make things worse instead of better.  

It was evident in the teacher's note in the communication log today that she was already on the defensive.  She noted that we should try to talk about his day in a more positive way and that we should encourage him to tell us about the good things that happened at school, instead of focusing on the negative.  EXCUSE ME???????  She even went so far as to list questions we could ask him.  I guess she thought we were too ignorant to come up with positive questions on our own.  It's not like Javi gets off the bus and I ask him "Hey, so who was mean to you today?"  or "How many times did you get in trouble today?".  The nerve of her to even suggest that, after most of her commentary in the log has been negative, if any at all, which we have all brought up amongst ourselves on many occasions!!!  Which, BTW, we did nothing to suggest that it was her fault that he was miserable this year.  We just simply said he's unhappy and it's evident in many ways.  He feels like he doesn't have any friends and more often than not, plays by himself because the kids are mean to him.  In what way does that indicate we are pointing the finger?

I was so perturbed by her audacious insinuation that we are somehow spawning negativity and that is what is leading to his inability to be happy in her class.  

Lady, you can candy coat things any way you want, but no amount of focusing on the positive aspects of his day is going to change the fact that he feels like his only friend is someone that he is carrying on imaginary conversations with.  (see previous post)

Javi's stepmom wrote the response to today's communication log.  I knew I was not in the right frame of mind to word things eloquently.  She did a wonderful job of being polite, but it was also to the point.  I am certain, that no matter what we write, she is going to be on the defensive, so I can't wait to read the response.

Our next step in the process will be to contact the two other mothers whose children are in the other NSH program that we want him to transfer to.  We can find out more about the teacher and whether or not the class is full.  Javi was in the same class with these two kids since K, so he will at least feel like he has friends with all these chaotic changes.  Most children have that comfort of having students that they are familiar with, so why isn't it similar for children with ASD who have an even harder time with change?  I am still not seeing the benefit to breaking them up.  They told us that they try not to place all the ASD kids transferring to NSH in the same class.  I don't think there are any studies that show that it hinders growth to have some form of continuity in friendships for kids with ASD, but I am not an expert.  

From there, we will be speaking with the educational consultant provided by the regional center for their input and then contacting the district's program specialist. 

We are hoping to have a resolution before all the holiday breaks begin, since it can be difficult to get anything done during that period, as we have experienced in the past.

Ok, I think this post is slowly becoming a novel, so for those of you that are still hanging in there thanks for reading!!  I will continue to keep you all updated as it unfolds.  Sorry for the ranting, but I tend to get fired up about these subjects, as any mama would.

IEP Warrior

Well, today was Javi's IEP. About the most successful thing I can say about it is that Javi's dad, stepmom, Mark and I agree that the teacher is not a good match for Javi. She doesn't seem to have the knowledge, nor the sensitivity to deal with a child on the spectrum that has sensory seeking behaviors and a tendencies to flap.

Javi is not at all happy in school this year. It is evident in his academics that he is not happy. This is the first time ever that he has not even partially met an academic goal. He managed to meet some of his OT and Speech goals.

Surprise, surprise!! He's had a total academic and social regression. Hmmmm....wonder why?

It's no secret that we haven't cared much for his teacher this year. I am sure that she is fine with her other students, but where Javi is concerned, it just doesn't seem to be a match.

She told us that Javi has a tendency to clap and bother the other students. She said even though they work through this problem over and over again, he just doesn't seem to be making the connection to stop clapping and bothering the other students. Hello? Did I hear that right? To a person with Autism, that is like telling someone to stop blinking because it's bothering people. I wanted to tell her she should attempt to stop breathing during the meeting because it was bothering me. She just doesn't seem to make the connection that it is due to the fact that the part of the brain that controls the nervous system is damaged. So, when certain "emotional" chemicals are released in the brain that cause Javi to be anxious, excited, happy, etc, he flaps, or in Javi's case claps.

We ended the IEP with out signing, since we still have matters to discuss. They are attempting to call the ASD program specialist to consult, but frankly, I don't think it will help. Javi feels as though he has no friends. Today he told me that he didn't cry at school today, which has been a pretty frequent occurrence. So, I was glad to hear that he had a decent day today. He said that he still played alone.

Javi is not typically the type of kid that strives to play alone at school. He will typically at least attempt to engage other students, but now, he just says that he doesn't really try anymore. He just plays alone because the kids are mean. He has been telling me that he talks to a girl on the bus and at lunch. She is a little girl in a wheelchair. We had always thought it was sweet that he thought her wheels were cool and that they had things in common, their love for all things Disney. Apparently, the little girl doesn't speak, so any conversations he is having are not verbal ones. We had such high hopes that he had at least made one friend, but according to the teacher, he doesn't sit near her on the bus or during lunch. When I asked him about it today, he finally told me that she doesn't talk because she has a sore throat. He had told me that she had a sore throat once before, but I assumed it was because she had a traech. 

It's so sad to hear these things about him and to see him in this state. He is typically such a happy kid and a such a sweetie. He has completely changed since the beginning of this year. We thought maybe if we gave it a little time, that he would get used to the routine, and things would get better. It's just not getting any better. I think we are finished being patient.

Next step, I'll be contacting the program specialist to talk to her privately with out the teacher and tell her our feelings about the situation. We have suspected it from the beginning, but didn't want to jump to conclusions with out meeting with the teacher and other therapists. Now, I think we have all the info we need to conclude that it's the class is a mismatch, not just Javi being a bad candidate for this program. Fortunately, there are other classes available for him to go to, so we are hoping it will not be too difficult to switch.

We are hoping that there will be a quick resolution. I refuse to let him go through the year like this. The mama lion will pounce if I have too :)

Sweet Irony

The kids and I spent the day with Great-Grandma Audrey today. This is her last chapter in the book of life. We were glad that we got to be part of it.

She may not have been awake a whole lot, but I know she felt our presence. I told her that it was alright, and told her that we would make sure everything was taken care of. She's always been such a planner, so she has been planning out her service with everyone all week and planning the details of everything, just as she always has. After she made all her plans and made sure that she saw everyone to tell them good bye, she knew it was time to start letting go, I guess.

There was a moment today when she was slipping in and out when I was sitting next to her bed and stroking her hair. Kaylee had been playing with her stroller in the hallway at the door, everyone was talking outside in hall. Kaylee started crawling toward Grandpa and he whisked her up to stand and was walking her holding her hands. It was just so peaceful...I looked at Grandma Audrey and looked at Kaylee trying to walk with Grandpa. The sweet irony of the circle of life. A beautiful paradox...one generation coming to a close and another, just beginning. It was such a bittersweet moment. It brought tears to my eyes.

We did not get to spend much time with Grandma Audrey when she was well, but we were so glad that we got to spend time with her now. She has lived a very full life, we could only hope to be so lucky.

We got some time alone with her so, I did sing "Smile" to her while I held her hand and stroked her hair.



Rest now, Grandma, you'll be home soon...

The Weekend Report

Well, as I said in a previous post, this has been a pretty somber weekend.

Friday, we "tried" to celebrate Mark's birthday, but it was tough to celebrate with so much sad new lately. I went and picked up Mark's favorite, sushi and I had chinese take out (not a big raw fish fan) and we just hung out at home and watched episodes of The Big Big Theory, which was at the very least, some comic relief from everything going on. We also cleaned up the garage a bit to get ready for the delivery of my Mom's fridge.

Saturday, made biscuits and gravy for the family then cleaned and headed to Wally Mart. I needed to pick up a gift card and a couple staples, paper towels and milk. Then we took delivery of my Mom's fridge via my uncle and cousin, along with a few other things. Thanks Mom! My mom is moving out of the apartment she has lived in for the last 11 years, so packing it up has been a challenge. She is set to move in with my Grandparents to help them out. She is over there everyday now, until dark, so it really has become pointless to keep a separate place. They really could use the help. It scares me that they are alone for even part of the day. I just wish there was something more I could do to help out, but it's tough with all we have going on and living 100 miles away.

Went to bed pretty early last night after reading RDI book for a little while.

Sunday, spent the day with Mark's Grandma and family, see previous post. We did find a great coffee place in Escondido called Safari Coffee on our way to see Grandma. Had a nice cuppa on our 40 min drive up. We had lunch at Chili's with Mark's parents. I suffered for the remains of the day for my choices to mix laco-coffee (I'm lactose intolerant) and spicy buffalo chicken mini sandwiches. Have had a double whammy of GiRD and lacto tummy all day and still suffering. Sure the emotional state isn't helping either.

The kids did really well this weekend, considering we were cooped up for most of the weekend. They were very well behaved at the restaurant and the hospital. They had the hospital staff and patients swooning. Everyone just kept telling them how cute they are, to which, we cannot dispute ;)

Hoping to see find that rainbow after all this rain, but it's tough right now. It still feels like the quiet before the storm. Wish that little black rain cloud would stop following us.

On another note, Javi's IEP is coming up this week. I feel like I'm going to have to get ready for a show down. We have been having some issues at Javi's school that need resolution. We are not entirely satisfied with his placement. I haven't been satisfied from the get go, but we were trying to be patient to see if things would get better once he got used to the new routine, school, class and friends, but it seems like they aren't. He seems to be having a rough time making friends. He says the kids are mean, so he just plays by himself. We have also primarily only had negative commentary from his teacher in his communication log. We are hoping to get to the bottom of what's going on. I am going to try my best not to be the mama lion and pounce on everyone at the meeting :)

More Prayers Welcome

This has been a tough weekend for us. Today we went to visit Mark's Grandma in the convalescent hospital. She is not doing well. She was very pleased to see us, but we fear that today may have been our good bye. We are very glad we were able to go and visit with her.

Mark's parents arrived in town from Oregon yesterday. We were happy to see them, but we wish it could have been under different circumstances. They have arrived to put Grandma's affairs in order and to spend some precious moments with her. We are hoping that we will be able to visit with them a little more later this week, but we understand that visiting with Grandma is of the utmost importance. Hoping to get up to see Grandma again this week.

More prayers welcome for Grandma. We are hoping that she will not suffer for the duration of time she has left with us.

Happy Birthday, Daddy!

Happy 35th Birthday! May you have many more with your loving family.
Enjoy the day and save room for Chinese food and bucket cake!

Some sweet surprises

Yesterday we received some sweet surprises. The first being my cool new sandals with arch supports for my flat feet and plantar fasciitis. No more achy feet!




The second was a beautiful gesture of goodwill from Ethan's teacher, Ms. Danielle. She brought us dinner from Pat and Oscar's, one of our favorite local restaurants. She brought enough food to feed us for a few nights!! She had heard about everything that we have been going through with the family and our kids and wanted to do something to help out. Thank you so much, it definitely won't go to waste! We are so fortunate to have her as Ethan's teacher and as a friend.

The third was a decadent bucket cake for Mark's bday on Friday, directly from the Queen of Cakes, Mama Skates. We couldn't quite wait until Friday, so we decided to break in to it last night. We figured it would take us days to eat it, so with perishable food, there's no time like the present!! At least, that was our excuse.



It tastes as if it were delivered on a cloud straight from heaven's bakery. We enjoyed it thoroughly. Kaylee was the only one of the kids that was able to enjoy it last night, since Ethan had fallen asleep on the floor and Javi was at dad's. We got some cute video of her. Notice how she kicks her feet in anticipation of the next bite! We love you Mama and thank you so much for the cake.

We are so fortunate to have all of the supportive family and friends surrounding us. We may struggle with things here and there, but we always have them to pick us back up and reassure us that we are going to make it through these times. I just want to let everyone know, friends, family, and neighbors. Your kindness and friendship is truly appreciated. We don't know what we would do with out all of you. Thanks so much for always being there when we needed you.

Dynamic Thinking Experiment

I never realized how limited Javi's ability to solve simple problems that require some amount of dynamic thinking. Problem solving like this occurs on a daily basis with out even realizing it. We tend to take this ability for granted, but for some children with an ASD this type of problem solving can be difficult when they are accustomed to static or rote responses.

We have not begun RDI or had any type of parent training on how to structure goals for RDI. The only training I have had on the subject is from a 2-day parent training conference and reading information on the internet. I just thought it would be an experiment to gage how fast or slow Javi could come up with an answer to a problem that required dynamic thinking. We are hoping to begin RDI soon.

Quick Kaylee Update

Kaylee has been doing marvelously over the past few days since being released from the hospital. No seizures or spasms that we have witnessed and she seems to be getting used to her new high dose of Topamax. She had a rough first few days, it made her wakeful and a little irritable, but at the same time a little lethargic. Think it was the lack of sleep! I was also out of town, which didn't make things any easier on her, poor baby!!

Yesterday, she stood up for the first time, totally unassisted!!!! Hooray! Wish I was quick enough to get a shot of it with the camera. We are one step closer to walking!!

Soon she'll be chasing after her boyfriend!

Ok, gotta run to PT. Can't wait to share the exciting news with them!

New Point of View

The things I thought I knew about Autism have been completely changed forever. I really thought I had a good understanding of how to help my sons. What they needed in order to make them happy. My thought was that if I could simplify their life by keeping things as routine as possible, it would somehow help them and help our family. I thought if I could create challenges, that had a minimal chance for failure to induce that feeling of success, that it would somehow make them successful at other challenges.

When you think of Autism in terms of a broken brain that needs remediation, it will completely change your point of view. Cut out your feelings about the surface "behaviors" we are trying to curb. Cut out the frustration we face with our children in getting them to do the simplest of tasks. Cut out the thought of making life scripted and black and white to make things "easier" on them. After all, would you put a band-aid on someone that snapped their femur? That would be ridiculous, right? Why do we think that putting a band-aid on a broken brain will help?

My obsession with his flapping and stimming. My thought that if I just talked louder and repeated myself when they were having trouble working through a problem, that they would eventually understand and work through it. My thoughts that they were really just ignoring me or they are lazy when I would ask him to do something and they would just sit there and stare at me. My constant feeling that I was a failure as a parent because I couldn't teach my children to do a simple tasks like turn on the shower, tie his shoes, button a shirt, or use a fork. I thought that if I just exposed them to enough social situations that they would eventually learn how to socialize. It seems ridiculous, right? To someone that doesn't go through these daily struggles with a child with Autism (or delays) it would probably sound silly. However, do you ever notice that when someone doesn't speak english and comes in contact with a typical American that is trying to communicate, they think that if they just talk slow enough and loud enough they will understand?

As a parent of two children on the spectrum, I have been through many different challenges with them. We have seen many improvements in their behavior, in their self care skills, in their ability to use words and express their needs. I am very proud of the progress my children have made. I am not saying that a child with an ASD can't have a perfectly great and happy life without remediation, much the same as someone who can't walk, can't see, or can't hear or has some other type of handicap can't have a perfectly good life. But, if there was something that we could do, that could really help, wouldn't you want to try it? After what I learned this weekend, I really want to do what I can to improve on what we are already doing to help our kids.

As many of you already know, I went out of town this weekend to attend an RDI conference in Los Angeles. I would encourage those of you with children on the spectrum to investigate their website for yourself. I am not one of those people that is easily "sold" on a treatment for kids with Autism. I am very skeptical about some of these crazy sounding treatments. As I said once, and I will say it again, do your homework on anything and everything out there. If you find something you think will work and is safe for your kids, go for it. I am not trying to sway anyone one way or another.

What I learned this weekend, just really hit home for me. It touched on many of the daily struggles we go through with our children and the way they begin to treat these things is a very common sense approach to things. This excerpt was taken from the RDI website:

-----------------
Think about your dreams of a typical day in your child's future. Do you hope someday, he or she will:

Not only talk fluently, but engage in genuinely curious conversations?
Delight in a true friendship?
Feel a sense of pride in being able to contribute to his or her community?
Enjoy the excitement and comfort of a boyfriend or girlfriend and maybe even get married and have children?
Feel capable and confident living an independent lifestyle?
Experience the satisfaction and rewards of successful employment?

The goal of the RDI® Program is to provide the majority of people on the autism spectrum with the potential to attain a true quality of life.

Why "social skills" and behavior modification are not enough:

Prior to the RDI® Program, most intervention approaches taught children on the autism spectrum to perform scripted behaviors with limited value in many real-life interactions. For example, a child may be taught an opening gambit when approaching another child on a playground. However, if the rehearsed remark does not lead to acceptance, or even if it does, the child is left with no ability to participate in the spontaneous, highly fluid peer interactions of even a simple playground environment.

While they clearly have benefit, even the most widely used and most intensive intervention methods have not demonstrated their effectiveness in producing a high quality of life for people on the autism spectrum. We do not know whether any intervention programs, even those that claim to be "proven," actually lead to the child's ability to develop friendships, live independently and obtain satisfying employment. We all hear about children who are "recovered" or who "look normal" but we never really know what happens to them in real life and whether the "miracle" of their progress was really due to any specific program or treatment.

We believe that to produce successful adults, a clinical intervention program must develop effective ways to address the debilitating core deficits of autism. These core deficits: rigid thinking, aversion to change, inability to understand other's perspectives, failure to empathize, and absolute, "black-and-white thinking," continue to plague people on the autism spectrum throughout their lives.

The problem is, faking never ceases to be work.

Why language and IQ are not enough:

Scientists find that even those children who speak well and are high achievers in school, are at high risk for failure in life.

The largest study‡ ever conducted of high functioning adults with Asperger's Syndrome and Autism was completed in 2001. The researchers followed hundreds of young adults on the autism spectrum who had high IQ's and good language. 50% of these bright individuals went on to higher education after high school. Yet, at the time of the study:

Only 12% were employed
Only 3% could live independently
Over 65% had almost no social contact outside of their family
None were married or involved in a significant emotional relationship
Over 75% of children currently diagnosed with an Autism Spectrum Disorder (ASD) have at least average intellectual potential and adequate language development, placing them on the "high functioning" end of the spectrum. Yet, as this and other studies clearly demonstrate, their academic achievement and language proficiency are not sufficient to attain a quality of life. Despite significant progress in evaluation and treatment of ASDs, the prognosis for quality of life for people on the spectrum remains poor.

Yet the myth that language and academic achievement equals success continues to be communicated even by some "expert" professionals. The following page illustrates just a few of the many misconceptions that continue to spread.

For more info, I encourage you to investigate their website http://www.rdiconnect.com/.

Here at RDI Conference

Conference going great so far! Learning a lot. I will of course tell
you all about it in a longer post. I am in the middle of day two, the
last day of the two day.

Tomorrow I'll be back to the regularly scheduled program :) I can't
wait to catch up on everyone's blog posts. I feel so out of the loop :)

Shanna Grimes
(Sent from my iPhone)

Oops! This didn't get posted to the right place!

So, I accidentally posted this to Flickr, instead of Blogger, but this
one should have been before the Mostly Good News post! This was also an email I sent out to people who may not be regular blog readers.

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We are at Children's hospital getting tests run to monitor and measure
Kaylee's seizures. We came in this morning. We had no idea that we
would get in so soon. We had one originally scheduled for next month,
but with all the seizure activity going on, the doctor (and I, after
several nudges) thought it would be best to do it sooner.

We are all set up on the video EEG. She was not happy about the set up
at all. Fortunately, the tech was quick. Only took her 30 min from
start to finish. We brought our own back pack, that I purchased last
night, thanks to Danielle, for that helpful suggestion!

The tech liked our back pack so much, she said she wants to go get
some for EEG the department. It's small and has velco straps for easy
take off. It can also be attached to the hospital bed for sleeping.
Best $3.99 I ever spent!

We spoke with Dr. Neuro. He came to see us a few minutes after we
arrived. He will be keeping us overnight, with the possibility of a
second night if no events occur. If she doesn't have any today, they
will do drug deprivation tomorrow to try to force an event.

We've been recording for about two and a half hours so far, nothing
yet. She did have a very short episode just before we hooked her up,
of course! Not five minutes after the doc walked out too!

They did strobe her, I didn't notice anything, but I had to turn away
while it was flashing because it makes me dizzy. Not sure if the EEG
picked up anything.

We did up her dosage yesterday, and she slept well last night. She
only woke up once at 5am, which is when we were getting up anyway, she
usually gets up at six, so it wasn't too far off.

She's sleeping peacefully now. I am sure she's tired from her busy
morning.

Please check our blog
www.g5familyblog.blogspot.com
For updates while we are here.

I also posted some pics to Flickr.
www.Flickr.com/photos/alphastatedotnet
-or-
Click on our Flickr badge on the blog's sidebar.

More updates later...

We're home!

It appears the new dosage worked very well. We tried to force an event with drug deprivation, but nothing of any real significance occurred. There were a couple blips here and there, but nothing like she was having for the last few days. Isn't that Murphy's Law?! This is a time when we really like Murphy! We are hopeful that the Topamax will continue to work. Dr. Neuro raised her dose one more time, just to make sure and said he wants to see us back in December. At that time, we are going to schedule a repeat MRI just to make sure there aren't any tubers putting pressure on the right cortex where he found some slowing in her brain waves.

Her focus appears to be just in the left frontal lobe, so that was excellent new to hear that it is isolated to one area of the brain. He is still suspicious of TSC, but is anxious to find out what Dr. Genes will say at the end of the month. He wants my sister and I to get tested.

I am completely exhausted. I still plan on going to the RDI conference tomorrow morning. We have respite care coming in for eight hours a day to help Mark out. I'll only be away overnight. Well, I'd better get some rest and get to packing for my next trip! Thanks everyone for all your well wishes, prayers and phone calls. I know I haven't been able to get back to everyone, but I promise I will when I get home from my trip.

Mostly good news, so far!

Well, since we just went up again on her Meds last nite and she had
another one of the high doses earlier today, no seizure activity. This
is good news since it seems like we may have found the magic dose if
it continues this way. We did have that happen last week, when we
increased, so I don't want to get too excited yet.

The plan for tonight is to deprive her of meds and see if we can catch
a cluster.

He did find a seizure focal in the left frontal lobe, which coincides
with her partial seizures and possibly her tendency to appear that the
spasm activity is primarily on the right. More excellent news, still
no hypsarrythmia! I asked if it was possible that it never was IS at
all and if it was possible that they were partial seizures that
clustered. He said most likely, they are still spasms. Another doc had
reviewed her last EEG as well. Because the movements, classic jack
knife IS, and the fact that for the moments she had these movements
her brain activity went flat for that split second, that it is still
IS. He said in rare occurances you can have IS without hyps. Which is
wonderful in terms of development.

He did find that her right cortex appears to be damaged, which would
be the part of the brain that can effect vision. He is not certain
what caused the damage, whether it be a tuber or a seizure. He would
really like to catch a seizure so he can get a more accurate picture
of what's happening.

We are hopeful that she will have an episode tonight, or tomorrow
morning so they won't keep us here too much longer. We are set to go
home at around 1pm.

If they do find that she is having spasms and they prove to be
uncontroled by Topamax, we will move toward the Ketogenic Diet which
will require a week stay in the hospital at a later time.

Let's hope we don't need to go down that road. We love to see Kaylee
enjoy the rich things in life, like cake and ice cream on occasion,
which would not be possible on the diet.

Thanks every one for all your warm thoughts and prayers.

Shanna Grimes
(Sent from my iPhone)

Back to Children's

We are all packed up and ready to go for our 24 hour vEEG. I have been pushing for it thinking that he would schedule us sooner than next month with all the recent activity. I called this morning about her increased spasms and CP seizures and left a message. A few hours later he called and left a message that he wanted to get us in tomorrow morning. EEG called us by 2PM and had us scheduled for 8AM tomorrow morning. Dr. Neuro mentioned in his message that he wanted to talk to us about treatment if the EEG reveals what we think it will reveal, that she is in fact having more clusters and complex partials. I am not sure if we will still be going in the same direction we had planned after he said that.

Kay isn't really sleeping well at night. We think that she may be having seizures at night, since this all began at the same time we noticed the increase in activity and before we increased the Topamax dose. Today the count for seizures I witnessed was two clusters and two CP's. Clusters usually last a little while, so I feel like I can catch most of those. Some of her CP's only last for a few seconds so there's a good chance I missed some, since I cannot hover over her all day (who can? She's always on the move, crawling around and getting in to everything! the little stinker!).

I will send updates from the hospital. I guess we will find out more info after he reads the EEG. Hoping for the best, but still preparing for what may lie ahead.

Fear of the Unknown

We have had the seizures kick back up again. We are going to have to increase the meds again tomorrow. More clusters and more cp seizures. One CP at lunch, one CP before we left for dinner. One cluster in the car while we were driving to the breast cancer fund raiser. My friend is doing the SGK 3-Day Walk, so she had her birthday dinner at a restaurant that was willing to donate a portion of the proceeds to breast cancer. Another small cluster at the restaurant. It seems like they are slowly ramping up.

I called Dr. Neuro's assistant and called the dietician to schedule an appointment so we can begin the Ketogenic diet soon. We should have an appointment set up by the time we hit our max dose of Topamax, I hope!

We are still scheduled to see Dr. Genes at the end of the month and still scheduled for a repeat vEEG at the beginning of next month.

We had PT today with a substitute therapist. Ms. Bonnie is taking some time off. I was picking her brain about Kaylee's flaccid muscles. She isn't sure why her muscles are not developing much given her level of activity. She's making progress with her abilities, but she said she doesn't have enough leg muscle tone or hip strength to support her own weight with out assistance. Hence why she is not standing on her own or walking unassisted. She doesn't have the muscle tone to balance her weight. I am getting nervous about her tone not improving much. We work with her so much at home. I'm not impatient for her to walk, I just hate playing the waiting game to try and figure out if there is some other underlying problem. I know they don't have a crystal ball to tell me whether or not she will walk well unassisted, but when ever I say "maybe she'll be walking by Christmas" they say "that seems like a reasonable goal". It's not the confidence they had when we went for our first few sessions that she wouldn't be needing therapy for long with the progress she made in the beginning.

I hate and fear the unknown. I am more confident that I can deal with emotional blows, but it's the wait and see stuff that sends me. I want to know one way or the other. I guess all we can do is hope. I know that's all anyone can do for their child. Everyone has hopes and dreams for their child, but they are a little different when you have kids with special needs. Most people dream of their child going to college, having a good career, having a family, owning a home of their own. For us, we dream of the things many people take for granted. Performing self care tasks independently (dressing, showering, preparing food), be completely potty trained, tie shoes, follow directions, communicate well, make friends, walk, run, play a team sport effectively, ride a tricycle or a two wheeled bike, read at grade level, use money, etc. All these things that you almost anticipate as an automatic is a challenge for my children. Some of these things may never be mastered.

I just ache sometimes knowing what a challenge everything is for them. How must they feel waking up every morning and willing themselves to get up and face all their challenges head on each and every day. I can see how life can be so frustrating. Sometimes it's easier to throw a tantrum than to have to deal with one more thing!!!

So here's to our brave children who get up every day and face their fears in this wobbly old world every day. They are a lot braver than I am!

Prayers Welcome

When it rains it pours...why does bad news seem to come all at the same time?

Please pray for Mark's Grandma as she battles Stomach Cancer and recovers from abdominal surgery.

Please pray for my Grandparents and hope that they will get some answers at their next docs appointments. I have told most of you what's been going on with them. Please pray that they will not suffer in pain for the rest of the time we have with them.

Please pray for my little princess, so that we can get good control of her seizures.

and last...

Please pray for strength for me and my family to see us through the rough road that lies ahead.

Happy Birthday, GG!!!

We hope you got to relax a little today. Wish we could spend it with you.

We love you,
The Grimes Family 5

OCD Much?

Ok, I think I have satisfied the OCD monster.  I am always looking for a better, more efficient and more aesthetically  pleasing environment.  Ok, well, I'll admit it, I just have OCD.  Whenever my life feels out of control I tend to rearrange, reorganize or declutter the house.  I guess it's therapeutic to me somehow.  I don't know if it's because it's one thing I can control amidst all the chaos or if it's because I feel like I can relax in the space after it looks just the way I want it.  Maybe it's a little of both.  At any rate, it gives me a chance to dust and clean under, over, inside, and out on things that would normally have a coat of dust.

Our home is SOOOOO DUSTY!!  I have never seen dust collect like it does in this house.  I suspect it's because the house's forced air ducts have never been cleaned.  I have to dump our vac canister every single time I vacuum because the compartment gets completely full.  It's pretty gross.  I know when we eventually buy a home, the first thing to go will be the carpet.  I hate carpet!!  It's totally dirty.  I actually hate any soft surface that can't be washed, cleaned and disinfected on a regular basis.  I am a floor weirdo.  I like my floor to be clean.  I feel like if my floor is clean, the house is clean.  I know that's a weird way to think.  I am also psychotic about labels and everything having a container.  The person that started the "Container Store" is my hero.  I love going there just to get ideas and look at the latest in home and office storage.  Another one of my favs, IKEA.  Love the prices there and my kids like to play there.

Well, next stop on my reorg list is the garage.  Although, I think I'll wait until my neck heals.  My neck is just throbbing from all the work.  I know, I know, I feel a little bit better and I start moving stuff.  Probably not the smartest thing :)  I did manage to get the mission accomplished, which originally was to A) Make space for some of the stuff my mom is moving out and letting us have.  B) To gate off the entertainment center so Kaylee will stop messing with it.  She drives the boys crazy when she turns off in the middle of Wii play or during Chowder (Javi's fav cartoon).  Hoping it will be a while before I get the OCD bug again.  I am exhausted!

A Day at the Pumpkin Patch

We had a really good time with the kids.  They loved hunting for scarecrows while we were on the hay ride and they learned from Mark to always keep to the right wall to make it through a maze.  It totally worked!!  The kids also got to pick a pumpkin out of the patch right off the vine.

My neck was killing me after carrying Kaylee in the carrier and going on the hay ride.  It was pretty bumpy.  Probably not the best thing to do with whiplash :)  Hope it gets better soon.  I'm going to call and make an appointment with the physical therapist.

Kay seems to be doing well with her increased dose of  Topamax.  We are going to call Dr. Neuro tomorrow to set up an appointment with him and also with the dietician to get more info about the ketogenic diet.

Update, Dr. Neuro

We talked with Dr. Neuro about Kaylee's seizures, he gave us a few
different treatment options.

1. Increase her Topamax to the max dose slowly and see if it curbs the seizures and spasms.

2. See the dietician to begin the Ketogenic Diet.

3. Vigabatrin

Dr. Neuro said he doesn't need to do a repeat vEEG to confirm. He said if it looks like spasms, it's spasms. He said he didn't want to waste time testing, he wanted to move straight to treatment. Given that her other seizures had kicked up in frequency as well, he felt that we
needed to move quickly. He said he was confident that I knew what to look for.  Also, it doesn't really change the course of treatment, since we are not going to use ACTH again.  She didn't do well on ACTH and it didn't work well on her either.

It wasn't the answer I was hoping for at all. I wanted him to stand up and say, no, you are probably wrong, there is nothing to worry about. Our Dr. Neuro puts a lot of stock in a mother's intuition. He thinks that more doctor's need to listen to that instinct.

We have not made any firm decisions on treatment yet, but we are leaning toward diet and Topamax. For the time being, the increased dose of Topamax has kept the seizures at bay. She has been very wakeful at night, so we are not yet certain if that is from seizures or from increased meds. The doctor said we need more time to see which one it is.

It's very disappointing.  We really thought we had the IS beat.  We were pretty knew we may never be free of the Complex Partial's, since she had occasional seizures with TSC.  I guess we just feel blessed that we were free of the IS since the end of April 08.  One year ago almost to the day is when the IS began and we have come a long way since that bumpy road.  October is our favorite month, but these last couple haven't been so great.  We are hoping we won't be celebrating another one of Mark's birthdays at Children's Hospital.  As nice is the hospital is, it's not a good place to party :)  Kaylee has plans to dress as the "littlest angel" for Halloween, so we are hoping to be able to do the typical dressing up and trick or treating this year.  It will be her first, since she was on ACTH and in misery last year.  She had swelled up so much, we couldn't zip up her costume.

Calling on all prayers to see us through this rough time.  Hoping for a speedy cessation of the spasms and are next course of treatment will work with minimal side effects.

Return of the Spasms?

Well, we have had a few more of the complex partial seizures than normal. She may have 3-4 a month, but this week, she's had seven in the last four days. I spoke with Dr. Neuro today and he decided to up her dosage of Topamax. He said that if we didn't see a reduction in her seizures by Monday, that he wanted to move up her vEEG and possibly change her meds. We discussed putting her back on Keppra, since we had great luck with it before the onset of the IS. We were so confident that the spasms were not going to return, but two hours later, I took some video of Kaylee.

I just stared at her, completely frozen when it first began, even though the camera was right in front of me. I was in such shock and disbelief, that I guess it just didn't process right away. She was making these movements for a good two minutes before I started filming and they occurred every two to ten seconds. The whole top half of her body would stiffen up. Please comment and tell me what you think. I will be calling the doctor tomorrow.




I'm trying not to get too upset about it yet, because I have only caught it once. She's definitely been making some weird movements lately, but we have been so busy this week, I haven't had a chance to just stare at her to see a pattern. My gut tells me that this isn't good, but I want to see a pattern before I start to worry. We know that even if it is, ACTH is not an option for us. It didn't agree with her the first time, so we will definitely be headed toward Vig. I actually already have the referral letter to a doctor in Mexico just in case the Topamax didn't curb the spasms when the ACTH didn't work the first time around. We'll see what happens tomorrow. Please pray that I am wrong...