Team Brycen 2011

Only 11 more days until Iowa Walk Now for Autism Speaks!!  Team Brycen 2011 has done a phenomenal job of fundraising again this year!  Our team has raised almost $4500 to date with more that has been mailed in over this last week.  We have a ton of walkers signed up and are once again planning a picnic lunch afterwards to celebrate another successful year.  Above you can see what our team shirts will look like this year!  Of course, we incorporated the train theme again to celebrate Brycen's passion for trains. 

Thanks to everybody who has pledged to walk on June 11, as well as to everybody who has donated over the last several months.  We appreciate all of the support! 

17 Minutes!

17 minutes...that's how long Brycen and Aubree played together this afternoon with the same toys, appropriately, and with no fighting/aggression. 

I can't remember the last time this happened for this long and this appropriately...has it ever happened?! 

I sat back in the living room chair and just watched from a distance, ready to intervene if needed, but enjoying a very special sight.

Most children with Autism have limited social skills.  Most do not understand how to play with toys appropriately.  Most want to play by themselves.  Most have limited attention span.  Most are very obssessive with how they play with toys and are very repetitive.

Brycen fits all of these descriptions and so much more of the spectrum.  Trying to play with him can be very stressful and takes a lot of energy. 

When Aubree was very little, she learned how to "adapt" to Brycen's way of playing.  She craves his attention and for the most part is very tolerable of his way of doing things.  This is all she has ever known in her brother.  She loves him!  He loves her!

17 minutes...a glimpse into what a typical sibling relationship looks like for other families with children this age (yes, I know that kids this age also fight...Brycen & Aubree do a fair share of that!).

A glimpse of what could have been if Autism had not robbed my little boy of his social and play skills at the young age of 25-26 months. 

A glimpse into what my dreams were when I found out I was pregnant with my second child, of what all parents dream about for their children.

A dream that was temporarily taken away from us, with occasional glimpses of what can and will be someday. 

Someday, we will conquer Autism.  It may not be in the form of a cure and it doesn't mean that all will be ok every minute of every day, but we will give all that we can to Brycen to help him overcome some of these things that should be joyous in his and our lives...like playing with his sister.

17 minutes of pure sweetness and joy!

"The Wheels on the Bus...

...go round and round, round and round, round and round.  The wheels on the bus go round and round, all through the town!"
A couple years ago, Brycen quit doing the actions to songs.  We have him on video when he was about 1 1/2 doing "Itsy, Bitsy Spider" and "I'm a Little Teapot" and he loved it!  Shortly after his second birthday, he lost interest in and the ability to do the actions, as well as the attention span for even a one minute song.  He would scream at us when we wanted to sing a song to Aubree who was a baby at the time.  Slowly over these last couple years, he has started to tolerate us and her singing and doing the actions.  Occasionally, he will smile and attempt an action as well.  About a year ago at his old school, he would clap to a song during circle time.  His teacher at this school informed us a couple months ago that he was actually wanting to do some actions to "Wheels on the bus" especially the verse about the baby.  Ironically, he not only has been scared of buses for the past year and half, but he also had two new baby cousins on the way when she told us about this (see below).  Not sure if it was a sign that he chose "Wheels on the bus" and the baby verse to start participating in then. 

To tie this all together, the teacher and associates re-introduced the bus to Brycen recently.  If you recall, about 1 1/2 years ago, the old school participated in an evacuation drill and left the backdoor of the bus open which resulted in Brycen afraid of buses more than likely due to the loud buzzing noise that comes from the backdoor being left open.  Earlier this school year, Brycen's school had a bomb threat and the entire school was bussed out to local churches including Brycen and his class.  It was a scary moment for him, not only having to ride on a bus that he was deathly scared of, but the change in routine...and for me, not knowing where he was at first when he didn't show up on the school van as scheduled.  A few weeks ago, the school practiced an evacuation drill again and Brycen was able to participate with some stress.  Recently, the teacher and associates decided to work on riding the bus with a few of the preschoolers including Brycen to help him overcome his fear.  Earlier this week, he sat on the bus and rode around for a few minutes with some stress again.  Just yesterday, they took him for a longer ride to get ice cream with the other kids and the report was that he did great, no problems and even sat in a seat by himself! 

Brycen & baby Jocelyn

Brycen & baby Abigail

Babies...we were so nervous to introduce Brycen to his new baby cousins when they were born.  He really has not been around babies since Aubree was born and when he regressed.  We were nervous on if he would become upset when they cried, if he would be aggressive with them, etc.  We were so ecstatic to see that he was thrilled about them!  He wanted to hold them (and he did so appropriately with both arms!), look at them, touch them nicely, kiss them, and hug them.  He also requested "baby" quite clearly and pointed to his lap on the couch when he wanted to hold Abigail one time!  It was a great sight to see and I wanted to share these pictures with all of you...aren't they adorable!!  I'm sure their parents were also nervous about having him around their newborns, and I appreciate them stepping back and letting him be involved by holding and touching them.  It's experiences like this that really show how affectionate and loving Brycen can really be!

"Autism Rocks...

...and rolls and spins and flaps and loves and laughs."

I saw this quote recently on multiple websites/blogs but can't seem to find the person that said it.  This really describes Brycen right now...literally!  For the past few weeks, he has been on constant stimming-mode, very aggressive, not transitioning well, not accepting change, etc.  When we first started his medication a few months ago, many of these things decreased.  We know that these things are never going to disappear, but our goal is to minimize what we can so it is not interfering into his daily life as much.  At his last appointment with the child psychiatrist, we discussed the option of increasing his dosage as summer approached knowing how routine changes can affect him.  It's not that I want to continually rely on medication to help him, but it's obvious that he benefited from starting the medication many months ago.  Well, with the recent changes in our lives, we are starting to see increase in the stimming again, as well as his irritability and not accepting the changes he was accepting before.  I put a call into the nurse and she just called back to say it's ok to increase to 6mg instead of 4mg of the Fluoxetine, so we will be starting that tonight already.  It would be great if we could go back to 4mg after we are moved and settled into a new routine, but if not, that's ok too.

The plans for our move are coming along well!  I am taking Brycen to a new therapy clinic in the new town next week for an evaluation, and will also be meeting with the new school to discuss plans for that change.  We have found a rental house in town so we will be officially moving over June 14/15.  His respite and SCL services will be staying the same, and the paperwork is already moving forward for his transfer to Jackson County Case Management.  I still have multiple places to call regarding his services, but these were the most important ones for him so I'm feeling accomplished at this moment. 

Over the last year, I have had many people ask me the question about why we choose to continue with the moves with my husband's company when we know that Brycen has a hard time with change.  Honestly, my answer varies on the day.  Sometimes I think it is not the best for him, and other days I feel like throwing change at him is just preparing him for the real world.  I know that my husband's job provides us with financial stability, a family-friendly company, good insurance, and in several years will give us the opportunity to be settled in one town.  Every family makes sacrifices to better their lives and this is one that we signed up for before Brycen was even born, which means obviously before he regressed and was diagnosed with Autism.  We choose to continue on this path knowing the final outcome will be great for all of us, especially Brycen.  The changes that come along the way will present him with many, many challenges...but challenges make us better people, including a child with Autism.  Life doesn't always go as we would like and I cannot protect him from the inevitable change he will face throughout life, so I feel that preparing him with regular change now when he is young will help him adapt and accept later in life. 

Stimming: Why do I always feel the need to explain?

Almost two years after Brycen's diagnosis and I still feel the need to explain constantly.  Whether it's to family/friends or strangers, I feel like every single day (sometimes multiple times per day) I need to explain the reason Brycen does what he does.  Most of the time, it's the stimming that I am explaining.  Whether it is his screeching/humming or his rocking back and forth, Brycen is ALWAYS doing something.  Rarely is he still or quiet.  When dealing with so many behaviors and symptoms related to Autism, as parents we are forced to prioritize what to work on and what to let him just do.  I understand that some people may not agree with letting him stim, but since this is his way of calming himself, I don't think it is ok to expect him not to do this at all.  If you choose to go on a walk to help you calm down, I don't have the right to tell you this is not ok.  It's just how he is programmed.

With that said, I have to admit that it can be embarrassing when he stims in certain ways.  Such as when we were at the funeral home last night for a visitation.  As the volume in the room increased from more people conversing, Brycen compensated by increasing his humming and screeching.  Not exactly the most appropriate place for this to happen especially with a ton of strangers around that may not know anything about Autism, but considering he was calm and sitting on a chair with no problems while doing this, I had to prioritize on what I wanted.  Hitting and running around, or loudly making noises?? 

One of his newer stims is banging his fork on the table.  He tends to do this between bites of food and while I don't like him to do it, I'd rather have him eating and sitting at the table with everyone while banging instead of refusing to eat or constantly getting up and down from the table. 

He also tends to run back and forth in the house and jump.  I know most people do not allow running in their house, but we allow this because it's not like he is racing around intentionally.  He is seeking some kind of stimuli that he is able to get from running in a pattern from room to room. 

Like I said, from the outside perspective these things may seem wrong or annoying.  As the parent that deals with this 24/7, I am telling you that we choose our battles with Brycen.  I would expect if someone had an issue of me allowing him to do something in their presence that they didn't agree with, they can either leave or ask us to leave.  One of these days I hope I can explain myself less and less, but when I get those "looks" or when I witness someone trying to stop Brycen from doing things that I don't consider harmful, it's necessary to explain not only for advocating for Brycen but for educating. 

Parents need to choose their battles with all children as no child is perfectly behaved (sorry to burst your bubble if you are a parent that thinks this!), and with Brycen it just might be that we have more battles presented to us on a daily basis to choose from.  It's not that we expect less from him, but our expectations need to be a little different and modified to what his brain allows him to understand and control.  Not only are we learning about this every day, every week, and every month...but everyone around him needs to learn this if they want to be supportive and involved in his life, and the rest of the world needs to understand because it will continue to be right in front of them no matter where they go because the statistics continue to rise.

Moving AGAIN!

As most of you know from my FB page, Mike is being transferred to a new store already.  He was promoted to 2nd Assistant Manager (a new position that the company created about a year ago that only select stores will have depending on how busy and big they are) in a store that is almost 2 hours away from here.  We are so happy to be able to stay on the eastern side of the state though so we are still within 2 hours driving to both sets of parents!  Mike was only at this store for 9 months, and the kids and I had only been here for 7 months before receiving this news.  Just so you know, this short of time between moves is NOT typical of the company...it's usually more like 2-4 years, but when the company feels like they have found the right fit for someone to advance, they will move you when needed.

In addition to finding a new rental house (thank you to some old Fareway friends that are already in the new store that helped with this!) and of course moving our entire family and belongings, we also have the additional tasks of moving all of Brycen's services and therapies to the new town.  Some of you are familiar with what this all includes, but most of you probably aren't so I'll provide a "brief" summary of what my list right now consists of pertaining to Brycen ONLY:

• Brycen's Case Management will be transferred from Clayton County to Jackson County so he will have a new Case Manager to oversea his waiver services (respite, SCL, etc)
• Social Security will need documentation of our new residence and income changes (Mike receives a pay raise with the move as well as he will be scheduled more hours each week than he was as a full-time managment program employee) as that will all change.
• Respite services will hopefully stay the same with my old employer and my mom will stay as the staff if they will allow (they currently do not serve anyone in that area of the state)
• SCL services will still be through the CCO program and my mom as the staff...and I JUST received an email from the broker here in NE Iowa and she said she is able to stay with him also so I can cross this off my list besides having to change our residence and phone number with the broker and Veridian who oversees the payment to my mom for her hours worked.
• Therapy services (speech and OT) need to be located in the area...our current SLP at the hospital is helping with this and we just found a lead on a great place in the town.  Otherwise we will have to drive him at least 30 miles to a therapy clinic that works with pediatrics.  Cross your fingers for the local clinic to work out!
• Pharmacy change with his medications
• U of I genetics will need to be changed since we are under their care right now with testing
• Psychiatrist will either need to be changed or since she is located out of Cedar Rapids (she travels one day per week to our current area), we may just drive to continue to see her so we have one less change
• New physician needs to be found right away to transfer all of his scripts for diapers and therapy to new town
• Medicaid will need to be informed of his residence change.
• Activ Style will need to be informed of his residence change and provided with new script for his diapers
• Transportation company will need to be informed of his residence change and special approval required for reimbursement if we need to take him out of the county for any doctors or therapies
• Most importantly, his educational needs will be transferred to the local district including the new IEP that our current team worked so hard on these last few weeks so he will be in special education services, intergrated into the general education room with a 1:1 paraprofessional all day, as well as speech and OT included in his educational services.

Phew!  Of course I have another list that is just the basic moving things like insurance, utilities, credit cards, bank accounts, etc.  I know I've said this before but after looking at this list typed out, it really does make one think that having a special needs child and managing all of their day-to-day services is a full-time job in itself!  I love being involved in his services though and I am very grateful for the education and work experience I had prior to his regression and diagnosis so I know what needs to be done and how to stay on top of the basics.  It does make some of this a lot easier having 10 years of experience of working in the field...though no education or work really prepares you for the job of 24 hours of special needs, just like babysitting a baby for a few hours does not really prepare you for the 24 hour job of having a newborn baby. 

I'm trying to think positive about this move despite it happening so fast.  Each day I am finding more and more things that will be easier once we move such as the decreased travel time/gas money for Mike to get to work, to get Brycen to school, and hopefully to get him to therapy as well.  We already know one Fareway family in the area, as well as Mike has extended family that live within a half hour of the new town (thanks to his aunt/uncle that are letting him stay at their house over these few weeks until we move!!) so we feel that we will have some immediate support in the area.
 
I'll keep everybody updated on the changes with Brycen as they happen...and of course let you know how he accepts the actual move and many changes in his life as he adjusts to all of this!