Brycen made it into Autism Speaks Top Photos for Light It Up Blue!

Here is the link to see Brycen's picture that was rated the top second picture out of thousands that were submitted to Autism Speaks in honor of Light It Up Blue for Autism Awareness in April!  It's so great to see his face out there representing how Autism can affect anybody...there isn't a specific look to Autism as you can see.  It is out there everywhere you go!  I want to give credit to my brother-in-law, John, who took many pictures that day to honor Brycen and his fight, as well as all who came out to support that day to walk.  I know I've said this before, but I can't say it enough...Thank you, John, for capturing the beauty of my little boy!
http://gallery.autismspeaks.org/gallery/892?utm_source=social-media&utm_medium=Facebook&utm_campaign=Gallery

In addition to that, we are well on our way to meeting our goal of $3000 for Team Brycen.  I have attached another link that takes you directly to the team page on the Iowa Walk Now for Autism Speaks website.  We have many walkers signed up and many, many people who have donated from immediate family all the way to people that we have never even met!  Thank you for all of your support...and it would be great if we could see that number go ABOVE our goal again this year:)
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=3DB34045D82E43CB8B00563398FA3B7A&team=4010797&tlteam=0

It's IEP Time!

It's time for Brycen's IEP for this year and it's scheduled for tomorrow afternoon!  As some of you recall that followed our blog a year ago, we were not happy going into or leaving Brycen's IEP last year.  Though the "I" in IEP is supposed to stand for "Individualized", we sure didn't feel like it was that way.  It felt like the old school district was lumping him into a group of other kids with ASD's that had went before him and the graphs and rubric showed that.  The new "goals" were to be implemented starting that August when the new year started (they denied him extended year because he supposedly did not meet the qualifications).  Lucky for him and us, we found out in mid-August that we were being moved for Mike's job so thankfully he was only in the room for about a month before we officially moved.
 
Since starting at the new school, things seem so much more organized and focused on what he specifically needs and not what kids have been there before him.  This school/teacher has sent multiple papers home over the year asking our input before conferences and before the IEP about what we feel is going right, what we feel needs to be worked on, etc.  We have been made to feel like our input as the parent is actually valuable!!  We go into this IEP at the new school tomorrow with no reservations.  I always feel a little sick to my stomach before these types of things and any other parent with a special needs child can empathize with that.  I still feel that way with this meeting, but it is not nearly as strong as I felt last year!

For those who have never been to an IEP meeting for a child receiving special education services, here is a rundown of who will all be present:  us, his current teacher, his kindergarten general education teacher, his kindergarten special education teacher, his occupational therapist for school, his speech-language pathologist for school, educational consultant from AEA, and the principal.  It takes this many people to plan for his special education services for the next year!
 
Our goals for the coming year for him will of course be focused on communication and socialization.  We are also wanting an associate with him at all times to help with hygiene, transitions, etc.  The teacher uses our input to put together ideas of goals/rubric/graphs after assessing his progress over the last year on the current goals.  We do not have to agree to the goals written (though I'm pretty sure we won't have any issues this year) and can ask for changes to be made.  We can also ask for an addendum IEP at any time during the year though we have not felt that need since moving to this school.  IEP's are legal documents and the school must follow them.  There are special rights that children with IEP's and their parents have though luckily I have not had to research this too much yet because of how confident I am with this school district.
 
On the emotional side, IEP's are not fun because you once again see on paper just how far behind your child is from his peers and how he needs specific goals to work on besides the general education goals that every child in kindergarten has.  I know it's never going to be easy seeing and reading all of this about Brycen:(  I don't think anyone goes through pregnancy and birth with the hope that they will get to be the parents on the other side of the table at an IEP.  But it's something that God chose for us to go through and we know having an IEP sets out a plan for Brycen for his educational years to help him make the most progress possible with the most support he qualifies for, so with that in mind, we will go into the IEP knowing that this is the best for Brycen and knowing that he has a wonderful group of people sitting all around that table!

Here is a fun poem that talks about IEP's that some of you may have read already, but it helps lighten the mood around times like this!
http://www.child-autism-parent-cafe.com/ieps.html

"What does Brycen work on at home?"

As you read our posts do you ever ask yourself this question? I discuss what Brycen is working on at school and at therapy in my posts, but I realized I rarely talk about what activities we actually do at home. Of course he is a 4 yr old so he plays with trains, blocks, watches videos, plays outside (weather permitting...oh how much I dislike Iowa today because I can tell Brycen NEEDS to run off some energy!), looks at books, etc. But there is so much more that we focus on when doing things with Brycen.

There are specific things that our therapists have talked to us about working on with him through both speech and occupational therapy. We have a flexible sensory diet that we do with Brycen. A sensory diet is very common to use with children on the spectrum and other children that deal with Sensory Processing Disorder. Neurotypical children and adults can also experience sensory issues but a child with SPD or Autism usually experience a significant number of them that interferes into living life each day. With Brycen, we focus his sensory diet on getting out his energy through fine motor and gross motor activities, while also encouraging creativity, participation in various activities, and attention span. It probably sounds complex but it really isn't! Throughout the day, Brycen craves certain things (kinda like a pregnant woman craves certain foods and won't be happy/calm down until they have it!!) and activities. So in order to help him work through these feelings/cravings, we encourage various activities throughout the day. We have a mini-trampoline in our dining room for him to jump on; an exercise ball to let him lay on, roll on, bounce on; playdough and other things that feel different; blocks to stack and line up; tunnels to crawl through; various textured foods like crunchy and chewy, as well as the OT has suggested sweet, salty and sour; many other things that others may see as just typical toys but in my eyes there are ways we use them to work in therapy each day. The idea of a sensory diet is to use this technique so the unwanted behaviors like his jumping/screeching/hitting/throwing/spinning/flapping are decreased. On the other hand, there are some days where he's just going to stim (self-stimulate) and we just have to deal with it (seems to be one of THOSE days today).
So I wanted to give you an example of what activity I worked on with him this afternoon. He was very calm when arriving home from school and willingly laid down on the couch to watch his train video during rest time. As soon as 2:00 hit (rest time is over at 2), it's like an entirely different child erupted! He immediately went on an aggression path towards his sister after she woke up, he began throwing toys when I attempted to explain that hitting/pushing is not ok, he jumped and screeched in reponse to me wanting him to sit down in our version of his time-out, hit and slapped me which resulted in me feeling my blood pressure begin to rise. This type of behavior from him is typical for when he needs a structured activity and is craving something. Since he has now decided he enjoys coloring again, I thought I would take the opportunity to have him color and work on him using his machine/verbalizing the names of colors as he used them. Brycen has issues with his fine motor skills also so this gave me the opportunity to work on his grip while coloring and some joint pressure on his elbow to encourage him to ease off of how hard he presses on the paper. The pressure was not helping after the first couple minutes, so I just decided to let him do it and continue to break all of the colors as he did so because he obviously was needing that feeling it gives him.

After getting him started, I backed off to see how long he can keep his attention on the activity without me supervising so closely. I decided to check my email quick and shortly after I sat down at the computer, he came running over to me and pushed his paper in front of my face (literally about an inch away from my eyes!)! While most of you are thinking, "yep, kids like to show you what they made and are seeking praise as they tell you what they drew"...my blood pressure began rising in a completely different way than it did just 20 minutes before...out of joy and excitement. You see, children with Autism don't typically seek out praise for things they do as they don't understand that socialization part of showing something they did and wanting to discuss it. When Brycen was being evaluated almost 2 years ago, I recall reading a question similar to this over and over on all of the questionnaires "Does your child show you something either by pointing, leading you, or telling you about something?" At the time, I answered no to all of those questions because Brycen had NEVER brought something over to me to seek my input or just to show me. Brycen just recently started doing this again...which is something a typical 2 yr old does, so yes he is almost 3 years behind in this small yet significant developmental area that most parents don't give a second thought to.

Anyway, back to Brycen and bringing his paper over to me to show me...when I ooh'd and aaah'd over it, he had a huge smile on his face and screeched some more out of excitement. I asked him what color it was and he said "bu" which means "blue" one of the few sounds he has for colors! He did this 2 more times with my encouragement to either verbalize the color or to show me what color on his machine. He then walked back to the table, but immediately came back over to me where he had left his machine and found a page and pushed "more." I wasn't sure what he meant, so I told him that yes he could color more. He whined a little, pushed "more" again and then walked over to the stack of drawing paper and pointed while signing "more" at this time. Another huge accomplishment!!! He communicated to me appropriately a desire he had to get more paper as he was out of paper and wanted to color more. I picked him up and swung him around in a circle (which he LOVES) while saying "Yes Brycen..you told mommy you wanted more paper!" and he just laughed the whole time.

I just realized how lengthy this post is once again...imagine that:)  The whole point to this post is this is an example of something we do with him that focuses on so many different areas where he is delayed or is sensory seeking and how we spend a lot of our time with him.  While this activity ended very well (he is now happily watching a Dora video with Aubree so his body must be content with the sensory stuff that activity provided) and met all of the goals I was aiming for as well as more than I was expecting...it's not always that smooth.  Sometimes it's a guessing game on what he is craving or what will meet that craving, but this afternoon's activity was a success!  Here are the "pictures" that he drew as well during this marathon coloring activity...it looks like a lot but it really only takes him about 1-2 minutes for each one, so he can work through an entire stack of paper quite fast!

 

 I also included the pictures that Aubree drew during this time so everybody can see what she has been working on.  She's doing great at learning how to draw faces (she says it's either mommy, daddy, or Brycee but I really don't see the resemblance!!) and I'm so proud of her. 

I'm not sure if Brycen will ever get to the point of knowing how to draw these types of things so I try not to take for granted each developmental step she takes and give her lots of praise for her accomplishments as well!

AUTISM NOW: Summary of tonight's episode on affecting the family

The first episode in a 6 part series about Autism aired tonight on PBS Newshour.  Tonight's episode was an introduction to a little boy with Autism and his family and though the material only lasted about 15 minutes, it was full of honesty and information.

Here is a summary of what I took from the episode and how it relates or doesn't relate to Brycen and our family:

• Robert MacNeil started with a description of his grandson, Nick, and how he was born with no obvious symptoms of Autism.  Around the time that Nick turned 15-16 months old, this had changed and Mr. MacNeil referred to Nick as a "different child."  His daughter (Nick's mother) also talked about how her son went to his 15 month appt on track with all development and how he went "backwards."  Brycen also regressed but not until after he turned 2.  Upon looking back at still pictures and video, it is true for him also that he seems to be two different children (before and after regression).  His eyes look different, his mannerisms and how he moves is different, his sounds are different, etc etc.
• Robert MacNeil and his daughter discussed how Nick also experiences physical illness like digestive issues and brain seizures.  At this time, we do not see any of these issues in Brycen but that does not mean they are not there.  Later on in the episode it is discussed with Nick's doctor about how many behaviors such as stimming and sleep disturbances are typically contributed to the "Autism" when in reality these actually may be a sign of pain.  This is something that I definitely think about a lot...are some of the "behaviors" that Brycen is having actually a way for him to cope with pain he is feeling??
• Nick's mother contributes his regression to a mixture of vaccinations he was given at his 15 month appointment.  While I really have no opinion on if vaccines could be a trigger to Autism rearing it's ugly face in our children (every parent/child has a different story about this), but I do know that the last vaccinations Brycen had were 6 months before he showed signs of regression so we do not believe vaccines triggered his Autism specifically. 
• "Whole Body Experience" was discussed in relation to Autism which I completely agree with.  Autism used to be thought of as a brain disorder, but now we are seeing that it affects so much more and it is so important that you have a team of doctors to treat various symptoms.  This is something we have not yet expanded on, but have discussed and researched over the last couple of years.
• When interviewing Nick's older sister, she gave some very honest answers about how she felt life pretty much revolved around Nick and Autism and that money is spent on his vitamins and doctor appointments, as well as she wants him to be healed.  She made reference to being bored with Autism, it's unfair, and wondering if he was always going to be autistic.  Huge, huge fear of ours with Aubree!  We know that Brycen's care eventually will turn to her when we are too old to make the decisions anymore.  We know that over the next several years, she will feel like she is pushed to the side and that we don't treat her fairly, and how our life revolves around his needs.  What else do you do as parents?  You try your best to give as much attention as possible to each child just like parents of NT children...but you know that it really isn't fair.  It's not fair to any of us...to Brycen to have more obstacles in his life that he didn't ask for...for us as parents to not know how to help our child and to know that we will be lifelong caregivers to our child (yep, no retirement or empty nesting for us!)...and definitely not fair to her!
• The mother expressed how Autism does not leave a lot of energy leftover.  So true...another reason why we have finally made the decision that it's time for me to not work anymore and to focus entirely on the kids.  We did not come into any kind of windfall of money in order to do this, but we know as parents of a child with special needs, there are far more sacrifices you need to make.  Pretty soon Brycen will be increasing therapy to 3 times per week (which is actually minor compared to some parents that take their children 5 days per week) and that doesn't even include the occasional dentist, regular doctor, psychiatrist, IEP's, Case Management, Respite & SCL service meetings, etc that are required throughout the year.  Most children may have one doctor appointment every 1-2 months...but my child will have at least 3 appointments a week.  How many employers would be ok with their employee constantly having to take off work?  In addition to that, but how many daycares are really set up to care for children with special needs (between safety, staff training, etc) which plays into the fact that where would my child go so I can work?   Parents are constantly trying to stay on top of all the things we need to juggle just as parents...and then adding in the extra obstacles of the special needs child is just absolutely exhausting.  Then unfortunately, you just can't go to bed knowing you have the next 8-9 hours of straight sleep to recuperate because your special needs child also experiences sleep disturbances and has for the last 4+ years.  The cycle just continues over and over and you just hope that you have someone to rely on that understands how exhausting it is and understands all the safety concerns for your child (this someone happens to be Grandma & Grandpa in our lives thankfully) because not just anyone can watch your child.  It's not that easy!  You may think it is easy when we visit with you for an hour and I have brought an entire diaper bag of things to keep him occupied (sensory toys, snacks, juice, anything trains), but please know that is just an hour and I can guarantee I prepared for a long time for that visit just to try to make things look "normal" to the outside person.  One day, I really do want everybody to see what the "every day" is like with Brycen but in the meantime, I do want to protect people from what it can be like (most of the time anyway...he really does have some great days!).
• The last part of the episode was Mr. MacNeil discussing how hard it is as a grandparent to see the "disconnect" of Nick and feeling like Nick is "tuning out and ignoring" him while they are at the store playing with trains.  I can imagine that Brycen's grandparents and extended family feel the same way depending on Brycen's mood.  I really don't want anyone to feel hurt by this because it's the same with us.  Some days are great and I feel like he wants to hug me, try to communicate with me...and other days, it's like he doesn't care if we even play with him or he would rather just jump up and down, stimming while watching the cars go by on the highway.  All I can recommend is to keep trying...don't give up on him and developing that relationship with  him!  Deep down, I think he really knows you are there and trying to connect with him but he just doesn't have the ability to pull himself out of it and let you know that he cares too.  Get down on the floor with him, talk about trains, practice letters with him, give him Hi-5's...he may not be able to communicate back in all of this, but we know he gets that people care about him if he can see that they are trying.  Just please don't give up on him because I promise that he really does know how much people love him...and give him the chance to show you that he has so much to teach each and everyone of us about life and acceptance!

"Autism Now" Series on PBS starting April 18

PBS is going to be airing a 6 part series on Autism beginning Monday, April 18 during their PBS NewsHour.  This airs at 5:30pm in our area, but they are also offering each part online at least one day before the TV program.  The series shows how Autism affects the entire family, prevalence, causes, treatments, adults with Autism, and finally Autism & public policy.  The link below will take you directly to the PBS website that discusses the series.
http://www.pbs.org/newshour/rundown/2011/04/viewers-guide-autism-today.html

If you can, please take the time to either watch this online or on TV.  I am going to attempt to stay up to date on it next week and blog about my thoughts on the series and how it relates to Brycen.

~Genetics Update~

I received a phone call from the University of Iowa Hospitals- Genetics Clinic this week.  As you know, we took Brycen in February to have his blood taken and tested to determine if the Autism can be linked to genetics.  There are always good and bad things to doing more testing...the good thing with genetics is that if it comes back positive in one area, we have our answer as to where his Autism came from...the bad thing is that only 95% or so cases of Autism can be linked to genetics AND if is is positive, that means that one of us gave him the gene (or combo of both of us) so guilt may follow the outcome.

Deciding to go ahead with genetics testing was not on our priority list when he was diagnosed.  I believe we needed to work through the grief of having a child diagnosed with a life-long disorder and to start on the task of getting him as much help as possible to help with the symptoms and hopefully begin to see improvement.  We decided that it was time to pursue genetics last summer (2010) so about a year after his official diagnosis and almost 2 years after he started regressing.  We called U of I to schedule an appointment and was put on a waiting list for all the outreach clinics in NW and Central Iowa.  When we were moved back to the Eastern side of the state (closer to U of I) in the fall for Mike's job, I called to updated our address and phone number and asked about getting us on the waiting list for this area.  It just so happened that they had started scheduling out February appointments so I booked us for the first one available that month in the Cedar Rapids clinic to save us a little drive time/gas.

Genetics testing consisted of a physical exam, measuring certain body parts, noting markings on the skin from an ultraviolet light, as well as many questions about pregnancy, birth, and anything & everything in his life up to this point.  Of course it also involved taking a couple vials of blood from him also.

The first thing they were testing Brycen for was Fragile X Syndrome which falls on the Autism Spectrum, but is in it's own category because it is linked to the mother's chromosomes.  People with Fragile X have some very distinct facial features and Brycen does have a couple of them so it was a logical test to have done.  His test came back negative, therefore if I am a carrier for this syndrome, it's not too prevalent in my genes.

The second test they run with the blood is Chromosomal Microarray Analysis.  Attached is a link that describes this: http://www.sciencedaily.com/releases/2007/03/070329092046.htm  This takes a very close look at all the chromosomes and notes even the smallest of issues.  This test did find something in Brycen's chromosomes...an actual duplication of a part of the 16q.  Science is not my best subject so I'm not going to try to explain much of what the lady told me on the phone.  At this point, they checked the database for any link of this chromosome to a disability and found none noted (yet!).  The next step in testing is for Mike and I to have our blood taken and tested to see if one of us also have this duplication.  If one of us does, then the duplication is probably nothing and not related to his Autism or we would also have it.  If we don't have the duplication, then we will go to the next step which might include further testing of Brycen and entering the information into the database to see if any more people show up with the same duplication.  One thing I did want to tell you is that the lady from the clinic did tell me that this area of the chromosome is linked to memory, language, and learning which ironically is where Brycen has so many Autism symptoms. 

I will definitely keep you updated on the findings after we are tested and get results!  It really could be nothing, or it could be the start of something big in determining why Brycen has all of this.  The other thing I wanted to note is that if you, family member, or friend has a child that has been diagnosed with an ASD or other developmental delay, I highly recommend you take the time for genetics testing.  Even if this was done more than a few years ago, this chromosome testing is new and very good at finding the smallest of issues whereas the old testing was very basic so having it done again with the new testing could provide you answers as well.  If this duplication is something to enter in the database, not much can be done research and testing wise on Brycen until others are tested and come forward with the same area of duplication. 

A glimpse of what lies ahead for Brycen in the coming year!

I've had a rough week emotionally. I actually chose to stop reading things about Autism this week and am taking a break from the "in your face" articles and websites that just make me feel sad. While I know we are doing our best for Brycen within our living area and financial means, I don't think I will ever feel like I am doing enough for him!

I took the opportunity this week to talk to his speech therapist at the hospital about increasing his sessions. Currently, he goes to therapy two times per week for 1/2 hour each with Mondays being a co-treat session with OT and Speech, and then Wednesdays is only with speech. I had been reading about children going to hours and hours of therapy a week (and I'm not even talking about the ABA stuff, just OT/Speech/PT and other therapies) and it made me feel the need to re-evaluate where we were with him. He obviously has made some progress over the past few months and with the addition of his communication device, I feel like we need to start pushing forward and testing his ability for more. The speech therapist agreed to extend those two sessions to 45 minutes each and we did discuss possibly adding on a Friday session. She needs to get a doctor's order for the increasing frequency of seeing him (insurance purposes of course!), and is going to discuss having OT do the same and see him two of the days instead of only one each week. Talking to her reminded me that it wasn't just me that was holding him back in session time, but it's his ABILITY to do that. He has a hard time with attention span and staying focused, and while we feel this may be getting better, we know it will always be an issue with him so he will never be the child that can withstand hours of therapy a day. I have read that some people say that their children can withstand this much therapy because it's also play time for them...but Brycen honestly prefers to play alone or in his own way. He likes for us to play certain games with him, but he can be very content to stare out the window at cars or turn his bubble/sensory toy over and over for an hour. Who am I to say that he can't do those things he enjoys and instead be required to do more hours of things he just doesn't always seem happy to do for that timeframe?

In addition to attempting to increase therapy, we are also preparing for his IEP on April 26th. Mike might have to work due to a co-worker being on vacation that week, but I am so confident and happy with this school district that it doesn't even scare me to go at it alone. Pretty much everything that will be discussed that day has already been touched upon during his conferences and other meetings/paperwork over the last 6 months. It is so nice to work with a school that takes education and special needs so seriously!!

My mom, Brycen, and I went to visit the Special Education classroom yesterday afternoon after Brycen returned home from pre-school. While Brycen will be placed in a general education room for the majority of the day in kindergarten, he will also have a Special Education teacher that will pull him out for specifics (and she is also his teacher for Extended School year this summer). After meeting and observing the teacher on Friday, it is obvious that she knows what she is doing and loves what she does! She even has a therapy dog that comes to school every day with her! She explained a basic schedule of his day while in kindergarten and it's split between group time/recess/meals/centers/music/PE with the general education room, and then a few times throughout the day where he is pulled out to work on specifics like their new pilot program, Teach Town, and writing/math. We are pushing for an associate to be with him also throughout the day for many reasons including he is not even close to potty-training and still wearing pull-ups, as well as needing help with transitions, social skills, and other settings that could bring on behavioral issues.

He will continue to have individual sessions with the school's Speech Therapist (though the minutes allowed each month will be decided at his IEP in a couple weeks) and is currently being re-evaluated by the school's Occupational Therapist. As you probably remember, he was evaluated back when he started 3 year old preschool in the old town, but as he is getting older it's becoming apparent that he is behind and needing help in more and more areas. The old school said he didn't have enough issues to warrant them funding OT during the day which is why we seeked out the hospital over there to do some OT sessions. We continued the OT session at the hospital in this new area, and are now just getting around to asking the school to do the re-eval so he can possibly see an OT throughout the month in school too.

While I do believe he is behind in areas that Physical Therapy would work on, I know those are the least of what he needs to work on. I may look into an evaluation through the hospital in the future, but I really just want to concentrate on him being able to complete daily living tasks that require his fine motor skills and of course increase his communication skills as much as possible.

I look forward to what is to come with Brycen over the summer and next school year! I always hope for growth and more understanding of what he needs on a daily basis, but I really just want him to be happy, healthy, and able to have opportunities available to him to learn and adjust. He has an amazing team of people surrounding him!!

Brycen and his Communication Device!

Brycen has been awesome with his communication device since his came almost two weeks ago! We are so blessed to have had insurance cover this so that he can have a way to communicate more than his grunts, pointing, and yelling:) He has been taking it to school each day and to therapy twice per week and is so consistent with it. Of course the therapists are excited to use it with him since they had a big part in helping us get it! The teachers and school SLP are also very excited and have been brainstorming various things for me to program for their use at school. We were so excited to read the great note that his teacher wrote in his communication book today that goes back and forth to school in his backpack. "Another child was grabbing at it, Brycen pushed the button that said 'This is my communication device to talk...' He was standing up for his rights and knew what he wanted to tell her." Up until this time, the device has just been used to make choices and encourage various requests like please, more and thank you. This is the first time that we have heard/observed him using the machine for functional communication!! How amazing is that to not only have him stand up for what he knew was his, but he also did not choose aggression to communicate (which is usually the case)! ABC update: He continues to work on this multiple times per day and is getting so good at it! We tested him on an ABC game on the computer where it will say the letter when he pushes it on the keyboard...and he actually chose to do it in order of the ABC's with my help on only 3 of the letters! So not only can he voice the sound of the majority of the letters, but actually does know the order they go in during the song. He can also type BOTH his first and last name on the computer or the keyboard on his device accurately about 75% of the time. He's great at first name but still learning the entire last name and sometimes wants to put the R before the E or forgets one of the M's. We are so very proud of him and his accomplishments over the last several months!!