World Autism Day, April 2nd!

Tomorrow is World Autism Day.  Click the logo for more info.

Blue Sky Reserve Field Trip

We had such a great time on our field trip yesterday. This was Javi's first field trip with his new class. We went on a hike at the Blue Sky Nature Preserve. I was still battling my cold, but I didn't want to miss Javi's field trip. I got to meet a lot of the parents of the kids in the class. I also got to know Javi's new classmates a little better. They are all great kids. They are all so loving and accepting. It really makes me wonder why we try to shoe horn kids with ASD to be more "typical". It seems we have a great deal to learn from these kids. I held hands with most of the kids yesterday, many of them hugged me. They are so accepting, even of us new folk. No suspicion, no malice, just wonder and kindness.

I am truly happy that we found such a great placement for Javi. He has made some great friends his first week. He told me that one of the girls in his class, Sydney, is his girlfriend. I asked if she knew that ;) They are really cute together. They shared a bag of apples. Very cute! We love the new teacher Ms. Meghan and her assistants. They are so great with the kids.

Here are the pics of the trip...

Javi's New School

We are very pleased to announced that Javi will be starting school at Garden Road Elementary this Monday! Hooray! I went to check out the placement yesterday. It was so awesome to watch the teacher work with the students, I nearly cried. I just knew that this placement would be great for Javi and that he would be well matched to make friends easily. I knew right away that he would pair particularly well with a couple of the boys and one of the girls. Yep, two girls are in the class!! That is the most Javi has ever had. He will be one of the two third graders in the 2/3 class, but that's fine with Javi. He doesn't care much about the kids ages.

The teacher had already prepared a letter and a social story for Javi, even before we decided. She also had told the students about Javi and they were sooooo excited to have a new friend joining the class.

We are so happy that he will fit in nicely with the kids and that they will mainstream and accommodate Javi's needs.

Poor Javi

Still going through the motions of finding Javi a new placement. I have a meeting with the principal of the prospective new school where I will also get to take a look at how the class is run and meet the teacher. I am hoping that this will be a good placement for Javi, otherwise, I think we may have to go to homeschooling.

Javi has been pretty sick for the last couple days. Today, he had a fever of 103. He has barely gotten out of bed or eaten much for the last two days. As if all the school trauma and turning his whole little world upside down wasn't enough.

I know I was pretty vague at best about what was going on, but Javi has basically been on a behavioral downward spiral at school over the last, well, since the beginning of the year actually. The "experts" kept trying to tell us that he just needed more time to adjust, which clearly wasn't the case. The last straw was the two referrals and an in school suspension with in two weeks time. At that point, we decided enough was enough. I pulled him out of school until we could make other arrangements. It was against their suggestion, but at that point, I was not going to continue to further subject Javi to an environment that clearly isn't right for him. They were just not equipped to handle Javi's needs and they lacked the understanding of ASD to be able to work with him.

We have also taken Javi off the GF part of his diet, for now (maybe we'll try again someday?). It was just making him to angry. He didn't like being different at school or different at home or different from his friends. The anger Javi has been suffering with has just been so overwhelming, that we didn't want to further traumatize him by keeping him on it. He has made it no secret that he doesn't really like being on a diet, but who does? It did help him, but the benefits were outweighed by the anger issues.

We are planning to take Javi to an ASD psychologist to help him work some of the issues he has been having lately. We have seen a glimmer of the old Javi here and there since he started staying home with me last week.

I just wish there was more I could do for him. I wish I had a crystal ball that could tell me exactly what to do to make his life easier or more comfortable.

Well, until tomorrow. Thinking positive and hoping that the class I visit tomorrow will be the right place for him.

Kay's MRI Results/Javi's EEG schedule

I am happy to report that the results were NORMAL!  Yay!  

Next stop, Javi's EEG on March 12th.  He will have to be sleep deprived.  I think Mark and I will have to take shifts.  His schedule is go to bed at midnight and wake up at 4AM.  He has to stay awake from 4AM to noon when his EEG is scheduled.  Thank goodness he doesn't have to be food deprived.  That would be a really big problem.  Think we will go have breakfast at IHOP or some thing to keep us busy that early in the AM.

Awe...little ole us???

Our blog got some pretty special recognition from Kyle's Treehouse, an Autism Awareness site while we were away on our trip to Las Vegas, with our friend Fairfax.

We received an email from Lyndsey Silvesti of Kyle's Treehouse that our blog would be featured in an "Inspiring Sites" post on the Kyle's Treehouse Blog.  Wow, what a great honor.  We have been a fan of Kyle's Treehouse for many years.  It has some wonderful resources and helps by "empowering everyone touched by Autism to make effective choices".

It is a real vindication that we are reaching others that may benefit from reading about our life and our experiences.  There is hope, despite receiving a life altering diagnosis.  We try our hardest to instill in our children that they can do anything they set their mind to achieve and nothing, even their disabilities will stand in there way.  There is no limit on what you can achieve with hope, patience and understanding.

Sickies Strikes Again and Megameltdowns

My pretty princess and my little middle angel are sick, once again. It started on Friday and has been getting better and then worse all weekend. Yesterday, we finally went to the doc. Kay has an ear infection, or the start of one, so she's on the pink stuff again. She loves it and always signs for more after she takes her dose. Thank goodness she doesn't mind taking meds!! She may be on them for another few years at least, possibly for the rest of her life. ACK! Being sick hasn't slowed her down one bit! No rest for the wicked. We did cancel therapy today.

We had her mid year progress review of the IFSP through the Regional Center. She has made partial progress on all of her goals, so we are happy. They plan to continue all of her services and we have also added the class for me Hannen's It Takes Two to Talk which I will be going to in about an hour. I am really looking forward to the class. Thank goodness daddy will be able to help out with the kids while I go to school ;) Weird to say that again!! Thanks daddy!!

Ethan stayed home from school today. I had sent him yesterday, but his teacher said he was so run down all day that he didn't really participate. I thought it best to keep him home to relax today so he could recoup a little.

Javi is already experiencing the effects of his dad being gone (six months in the CHP academy). These changes are really hard on him (and the rest of us). He had a MAJOR meltdown after school today. He is finally calm now after, breathing exercise, a run around the block and some alone time in his room, but we have gotten NO homework completed, despite trying to work on it for almost an hour...before the melt down really kicked in. He has done the same page twice over and answered all but 2 questions wrong out of 25. UGH!! It's going to be a tough adjustment. Poor baby!! Combine that will us also having more trouble with the school and the bus driver!!! I am sooooooo ready for a glass of vino. It's about time for the mama lion to pounce again. I wrote a long winded post in his comm log today, basically asking for extra patience and understanding during this transitional time for him.

Well, that's all for now. Just another fabulous day in the life...you know you envy me!!! LOL

Faces Of Autism

Jaden, Javi and Ethan are famous ;)  

After we saw our friend Jaden's post on Faces of Autism, we decided to submit Javi and Ethan.  What a wonderful way to promote awareness and also put spotlights on children that are not always recognized.  It's such a positive spin on what may otherwise be considered a devastating diagnosis.  It's a nice way to say to everyone, "Hey, we may have some rough days and we may have to do things a little differently, but these are still very capable and loving individuals with strengths and weaknesses, just like everyone else. " 

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 :)

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 :)

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.

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:

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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/.

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!

Autism Bites on Discovery Health Channel

Discovery Health channel will be showing a documentary on Oct. 1st at 8PM ET/PT. The title is: "Autism X 6" and it is the story about our family. It will rebroadcast on Oct 4, check listings for time.


We hope that by allowing our story to be told that it will do three things:

1) Increase the awareness of Autism
2) Increase the understanding and tolerance of Autism
3) We hope that we can be of some help to other 'Parents of Autism'

Please tell everyone you know to watch it. Your family, friends, neighbors, religious and political leaders, etc. Also post it, email it to any and all groups, forums and email lists you have.

If you would like to contact us personally go to autism_bites@yahoo.com or our website: AutismBites.com

Thank you!

Sensory Garden

Last week, our new behavior specialist recommended that we have a sensory room or station for Javi and Ethan to decompress and get sensory input. I kinda took that idea and ran with it. Why make a just a station, when we can make a room. It's actually something I had planned on doing when we moved in to our new house (which will hopefully be soon. I am starting to look again). Eventually, we plan to move this room in to our garage. A neighbor of ours, built a sensory gym for their son in their garage and it looks quite nice. They have a trampoline, a sensory swing .and basically what looks like a preschool classroom. We are still looking at trampolines, swings, and possibly a plasma car, but will probably wait on some stuff until Christmas since they can be used as fun items and sensory integration. Here is what we have done with the room:

We have a "sensory table", which is a 30" square play table for cars and train sets.  It has a lip around the edge of the table, so it works great to use the sensory play things like rice, beans, shaving cream play, and moon sand.  We have large storage tubs that fit perfectly under the table full of that stuff.  The car and train sets are easily set up, since we always keep the table empty and put them away when they aren't in use.  If we leave them out, Kayleezilla breaks the sets apart, so that's why it's easier to put them away.  The pieces end up all over the house. The sets are in the red buckets on the bookshelf for easy access.  The white drawers have all our art supplies and the tall cabinet with the doors have our larger toys, like fire engines and dump trucks.  The open wire shelf is actually a shoe rack.  All the shelves and cabinets have picture labels so everyone puts the items back where they belong.  It's working very well.  Ethan is used to the picture labels in preschool, so I thought it would translate very well at home.  Also, daddy has no excuses for not knowing where things go.

We have an art and board game table with our new stools.  It's actually a coffee table I found in the "as is" section at IKEA a while back.  We previously used it as a stand for the video game TV, but that has since broken along with the game cube, so our only source of games is the Wii on our family room TV, which is plenty!! The spinning disk (green and red thing) was also an IKEA find and provides good vestibular input, along with the red rocking horse.  They were very inexpensive too.

 

This is the "chillax" station.  The basket has a number of different sensory toys.  It also has Javi's ankle weights, weighted blanket, chew toys, "fidgets" and "rubbies" (for the skin).  The bean bag also provides stimulation.  This is the area we use in lieu of time outs.  Usually, when Javi has behaviors, they are due to over stimulation or under stimulation, so this is a nice place for him to get the input he needs, relax and refocus.  

The textured circles in the basket were also an IKEA find.  We can play "sensory scotch".  It's heavy work, combined with the input from the different textures on the circles.  Staying on the circles is also good for focus and concentration.  The hopping itself is great for motor planning.  

Can you tell we have had a lot of OT??  

I'm happy with the way the "sensory garden" turned out, which I give full trademark to Cody's mom, Shauna, for the use of that name.  Mark and I just thought that name was so cute and the kids really like the name, so it stuck.

Ring Ring, Meltdown Crisis Hotline

I was a little alarmed by the phone call I received from Javi's teacher this afternoon.  Apparently, Javi had had one of his 4 alarm fire meltdown's at school today.  We are not totally clear on what caused the meltdown, but it has made us evaluate whether or not Javi was ready for such a huge transition to non-severely handicapped (NSH).  While we are not quite ready to throw in the towel and pull him out of the program, we are going to try to figure out if he is just anxious about the change, or whether he needs more support than they can offer him.

I spoke pretty candidly with the teacher when she called.  She said she felt she could handle his behaviors, but felt that if meltdowns like the one he had today were a regular occurrence, we needed to evaluate whether or not this is the right fit for him.  

I am hoping that this was just a one time incident, since this was a huge change for Javi.  I think it would be a huge change for anyone to be at a new school, new friends, new teacher, new way of doing everything.  I guess we had to expect a little backlash.  

It's hard not to be the rescuer in this situation.  My first instinct was to go and pick him up, take him away from all of it and protect him.  The teacher had said that he calmed down and he was starting to eat his lunch.  She said it would probably be a good idea for him to stay, since he may think that any time he had a big enough meltdown, that he could be rescued.  I agreed with her.  She did a good job working through it, since he manage to clam down.  She said that she would call if he just couldn't handle it and needed to be picked up.  While I don't think that the meltdown had anything to do with him trying to escape anything or because he wanted to see how much he could get away with.  I think he just had reached his limit with the stress of all the changes and this was his way of expressing it.

He did manage to finish out the day and take the bus home.  We talked about what had happened when he got home and how to work through things and tell people when he needs a break when he is feeling frustrated.

I hope he has a better day tomorrow.

For more information on autistic meltdowns, visit this link...I think it's important for people to be aware and understand this is not a behavior that happens as a result of poor parenting or undisciplined children.  They can happen for many reasons.  Change, overstimulation, disappointment, frustration, extreme emotions of any kind can cause a meltdown.

Relationship Development Intervention

After spending countless times feeling lost on how to build a solid reciprocal relationship with Javi and for him to build these types of relationships with others, I think I may have finally found the answer to our prayers.

Javi has a strong desire to socialize with friends, but sadly, as he gets older, most peers his age are less tolerant of his behaviors. They don't always know how to relate to Javi, unless it's one of Javi's preferred topics. He can carry on a conversation with people, but he many times will spit out random sentences that only make sense to him. He will tell jokes that make sense to him, then he laughs a kind of nervous fake laugh, that I have come to think is very cute, but I'm sure his peers are puzzled by. He has a very difficult time reading people's body language and giving people personal space. I have noticed over the years that kids his age are becoming increasingly intolerant of his behavior. When Javi was five, kids didn't seem to mind that he was a little different. At six, they began to realize that he wasn't like other kids. At seven, kids just began to ignore him at the park, despite making his best effort to be social. Now at eight, kids can be just flat out mean to him, which breaks my heart. I try not to be the hovering mother, but it is difficult in terms of safety for Javi and sometimes for the other child. There have been a handful of times where I have seen Javi make a new friend that he is able to play and carry on conversations with. When it does happen, I almost burst in to tears of joy to see him having a truly reciprocal conversation with another child his age. For the most part, I am trying to explain to Javi, that he needs to give people space at the pool or at the park and just try to relax. He can get so excited at times, I think of him as that cartoon we saw as kids with the big dog that has the little pet that he is squeezing the heck out of it until it's eyes pop out and saying "I'm going to love him and hug him and squeeze him and call him George." Javi tends to do this to many prospective friends that he meets, more figuratively than relatively, for the most part. Yes, at times he does squeeze them when he is having a desire for sensory input himself. This is the point where I am usually explaining to the other child's parent that he has Autism and he doesn't mean to be hurtful, he just needs sensory input.

After speaking with a friend of mine last month who also has a child with Autism, she had told me that she planned to start RDI therapy for her son in lieu of just the traditional ABA. He is currently in ABA, but felt that his main area of need was mostly based around social aspects. I had heard of RDI before, but I thought of it as another pie in the sky type therapy that we would probably never qualify for through the regional center and could not afford to pay for out of pocket, so I just cataloged it and said maybe I'll look in to it someday. At the time, we had been making a lot of headway with behavior modification, so I didn't think we really needed it either.

We have had a lot of compliance issues with Javi in our home and even though we use the systems that were taught to us by countless behavior consultants, teachers and trying things that other parents have tried, we have yielded very few results. We will find a system that works, it will work for a while, then Javi becomes bored with the system and the behaviors would start to increase again.

We have about six sessions left of B Mod and have made very little consistent progress. Like I said, things will work for a while, then Javi starts to loose motivation, even though we have slightly tweaked his "privileges" to an even more favorable outcome should he reach a "level 5 charge", he gets stuck in a downward spiral and has a hard time recovering. I struggle with his behaviors and counteracting them pretty much on a daily basis, which have not gotten better with the addition to his changes with his school, teacher and having to make all new friends. I try to empathize with him, but at the same time, I have to enforce rules to ensure that everyone makes it through each day in one piece, both mentally and physically.

The bond between mother and child is there with Javi, it's just different than it is with Kaylee and Ethan. I'm sure many parents of children with Autism can agree with me there. Their needs are just different. Javi didn't have that "rubberband effect" as a baby and toddler. If we walked down the beach together and he took off at a run, he wouldn't look back at 20 paces to make sure I was right behind him. He didn't care who picked him up as a baby, a perfect stranger was just as good as me as long as they took him or gave him what he wanted. He didn't reach out for me or anyone unless it was to move him to something he wanted. He just had a different way of doing things. It wasn't that he didn't love me. I know he loves me, it was just different, that's all. If there is anything I long for in life, it's to have that infinite bond with Javi. To know what he's thinking and know how he puts it together in that brain of his. To fill in those links that are missing in our bond and the bond he has with other people in his life. I am hopeful that RDI will be the simple answer for us. To empower us as parents and feel that we have a stronger understanding on how to develop our relationship with him. Most important, to help him become more independent and be able to build relationships with people outside our family.

RDI:
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.

For more on RDI, please visit their website.

Flapping His Heart Out

It's been a while since I have really posted about Javi and his behaviors. I have had questions here and there about how Javi flaps. This is his self stimming behavior. We don't mind that he flaps, but we would like him to stop using objects when he does flap. The straws with the paper are affectionately called "Flappy Sticks". We find bits of toilet paper and tissue all over the house, which has be come somewhat of a safety issue with Kaylee crawling. If she puts a large enough piece in her mouth, she could choke on it. He also leaves the straws out on occasion, which are also a hazard to Kaylee. We are working with behavior modification to try to curb this urge to use a flapping tool. We are also trying to help Javi find other things to occupy his time, as he will resort to flapping whenever he has idle time or is bored. If he is engaged in an activity, he seldom flaps unless he gets frustrated. In that case, we let him regulate himself by flapping a bit. We are trying to limit it to certain areas as much as possible, as it is also a safety issue for Javi, since he can tend to block everything out but the flapping. He tries to do it in the parking lot, in the street and places where it's just not appropriate because of safety concerns.

Today he had a great day! We try to keep him busy. He seems to do very well when there are structured activities, of course. We went to the park after school, then we came home and changed to go swimming, then he drew pictures while the little ones napped, then we watched Jon and Kate + 8 which is our thing to watch together while the little ones nap. Then we played wii, followed by dinner, more art, then baking cookies, having popcorn and watching a Ratatouille. We had very little flapping today only for a few minutes to regulate before dinner.

We are so proud that Javi had such a great day! Tomorrow we are planning to take the kids to the Festival of Sail to see the Tall Ships in the San DIego Bay. We are planning to take the ferry to Coronado island. I will be sure to take pics and post some.

My Magic Wand

Well, today is one of those days where I am thankful to have my wonderful yummy vanilla iced coffees. Kaylee has therapy in a bit, her first OT session. We will also get the results of her OT eval. Ethan had to be in school at the usual time today and picked up at the usual time of 1PM. We have therapy across town from 11:30-12:30 and Javi gets out of school at 12:55. Time to do my magic and be in three places at once!!

*POOF*

My original plan was to pick up Ethan early at 11:00, then jet to Kaylee's appointment across town, then jet across town again. I realized quickly that wasn't going to work after my conversation with Javi's aide. She said we were going to have to figure something else out for Javi because it was just too overwhelming for him to wait at the curb. I had blogged the traffic congestion in my other post at Javi's school. The curb waiting is just not working out for him. Javi had a meltdown, which I could see from the other side of parking lot, being powerless to stop it. He really wants to dart to my car once he sees me, but they have such a procedure for pick up, he has to wait 15-20 minutes for me to get to the front of the loop. Mind you, I have been leaving 20-30 minutes before school dismissal at 2:35 and not actually being able to pick him up until 2:50. I have tried parking and walking in, arriving 30 minutes early, arriving only 20 min early to see if a little later would make any difference. So far, the only right way to do it is to arrive 30 minutes early and park 4-5 blocks away from the school and huff it in with the kids. For Kay and Ethan, that is there nap time, so they are not to happy to be awakened from their car slumber to be moved to a stroller. Either way it's difficult. I either have two screaming kids or one melting down.

The aide was just too overwhelmed by Javi's meltdown, so she said, "Well, this just isn't working for Javi. It's too much for him to wait at the curb. We are going to have to try something else tomorrow. Why don't you try getting here earlier?" I said, "I am already leaving 20-30 minutes before school dismissal. How much earlier should I get here?". She said, "Well, I realize that you have two little ones, but I think you are going to have to park and pick him up in the office from now on because this is too much for him.". She went on to say that I needed to plan ahead and write in the log who would be picking him up and where to meet. Well, so far, I have been the only one picking him up in the afternoon, so I am not sure what prompted that.

It irritated me a little that she seemed so flustered by Javi's behavior, being that she is an aide in his class. It really makes me question whether or not she can handle Javi's needs while staying supportive and calm. It is after all, only the first week and he has had a couple of questionable entries in the comm log that comes home with him. We are going to really evaluate the situation over the next couple weeks to figure out if this is the right placement for him.

Heh, ok, back to my plan for today. Since I realize I can't be all those places, I enlisted the help of Javi's dad. We are going to meet at the park after he picks Javi up from school, so we can chit chat and let the kids play after a long week of school. Hey, kids need time to decompress too. Since I can't be there to go to Kay's OT appointment, pick up Ethan and arrive 30 minutes early to pick Javi up, that was our only real solution. Thank goodness this is Kaylee's only session at 11:30, after that, it gets moved to 9:30.

Happy Friday!!