"When one door of happiness closes, another opens;
but often we look so long at the closed door that we do not see the one which has opened for us."
Helen Keller

Monday, February 16, 2015

Was that a conversation? I think so!

Recently, I've had a hard time explaining Brycen's verbal output.  While he is considered "non-verbal", he is able to say quite a few words & some phrases.  Most don't have all of the sounds, but those who are around him a lot can understand quite a bit of what he says including us, his teachers/associates, & some of our family.  With that said, Brycen is FAR from being able to converse.  Most of our questions to him require indirect (or direct) prompts to get a simple answer.

So that is why I am ecstatic to share what I consider a conversation we had tonight!  So much was "right" with what happened tonight & just shows us how far Brycen has come in the last couple years.

Brycen LOVES bath nights!  He has a routine to how he sets up his toys, the fact we can't start the water until after they are set up, he wants to watch his toys fall over/start to float, wants his identification bracelet off, and THEN he will get into the bathtub.  First is his hair, then his body, lastly is his favorite...play time!  Before bath-time is over, we also do a lot of warning by counting down minutes to him of how much time he has left.  This helps him tremendously with transitioning!  Typically we will do the countdown ourselves, but tonight I decided to turn the tables to see how much he could do on his own.
All clean after bath time!

This is how tonight's bath-time went after our initial routine and a few minutes of play time...

Mommy- "How many minutes, Brycen?"
Brycen, looking at his hands and slowly holding up fingers- "Four more minutes" (word approximations but definitely clearer than even just a couple months ago!)

Mommy, a couple minutes later- "How many minutes left, Brycen?"
Brycen, immediately responding- "Two more minutes."

Mommy leaves the bathroom to go down the hallway.

Brycen, yelling- "Mommy, mommy, mommy!"
Mommy, coming back to the bathroom, surprised that he was seeking me out- "What is wrong?"
Brycen, pointing to the drain stopper- "Brokeeeee"
Mommy fixed the drain- "I fixed it."
Brycen- "Fix it.  More water."
Mommy- "How many more minutes?"
Brycen, pausing for a few seconds & holding up a finger- "One more minute."
Mommy- "Yes, so you don't need more water for one more minute."
Brycen, agreeing & going back to playing- "Yes"

There is so much right with the interaction we had tonight!  First, he was verbalizing with no problems and very little hesitation.  He was connecting what usually is Mommy/Daddy's part of the routine and taking it over himself.  He was counting it backwards on his own.  He yelled for me when he needed help (this is so very rare for him!).  He seemed to understand why he didn't need more water to replace the water that accidentally went down the drain.  And overall, he was conversing back & forth with me!!  It wasn't just one word or one phrase, it was a continual conversation that took place over a few minutes.  My excitement might not be understood by all, but those who have been in our "shoes" and/or have a non-verbal child will completely understand why this is something to document & share!

I hope we have more to share with you soon about our conversations with him!  All of the progress he has made in just a few months is outstanding & it's so hard to keep up with him at times :)

Wednesday, February 4, 2015

Educate, Advocate, Make A Difference!

A few years ago after Brycen's diagnosis, I began investing in what I now call our "Autism library" at home.  A good portion of our "library" are books written at a child's level about Autism.  In the beginning, I was purchasing them to help our nephew, nieces, & Aubree adjust to having a family member with Autism.  But when Brycen was in kindergarten, I decided it would be beneficial to take the time to read one or more of the books to his classmates so they also could understand more about having a peer with Autism.  

Brycen is now in 3rd grade and I have expanded to not just reading to his general education classroom each year, but to many of the classrooms at school!  The first year was amazing to listen as the children asked questions and made comments that totally blew my mind.  They WANTED to learn and they WANTED to know what to do to be a friend to not just Brycen, but others with disabilities in their school.

Every year after, the questions were more in depth & harder for me to answer.  They were making me ponder why our youth act the way they do towards people with disabilities/differences, both good & bad.  It made me realize a very key detail in the WHY Brycen seems to be so accepted by his peers. 

We are real, honest, & involved with peers about Brycen.  We are educating & advocating at an early age.

***Before I go any further, I want to add a disclaimer that I am in no way saying we are the perfect parents.  This is my opinion about why BRYCEN is accepted & treated with respect by his peers.***

Brycen is adorable, giggly, loving, & wants to be around his peers.  But I'm not blind to the fact that it is very very hard for other children to want to be around him sometimes despite these things.  It's hard to know how to interact with a child that has deficits in communication skills.  It's hard to be patient with someone who doesn't always want to share or follow rules.  He gets aggressive & hits when he is upset, doesn't get his way, or doesn't know how to communicate.  Not exactly wonderful qualities in a "friend"!  Some adults can't even handle these things,  much less children!

So why does it seem that the kids are fighting over who gets to sit next to Brycen at lunch or help him with an activity?  Why is he so accepted in every part of the day at school even if he can't do everything the peers can do?

It's actually quite simple.  We have been involved with his peers from the beginning.  We have never hid the fact he has Autism & that he acts differently than his peers sometimes...ok, most of the time ;)  We are up front with the children in explaining Brycen's negative tendencies.  We answer their questions & don't take offense to some of the wording they use when asking or commenting.  We choose to educate them now at this age BEFORE the bullying & teasing starts.  We give them tools to use to communicate with him & understand why he does the things he does.  We encourage them to share what they have learned with their family.  We don't expect them to be perfect in their interactions with him.  We acknowledge it can be hard to be friends with someone who is different.

Once again, I'm not saying what we choose to do is perfect or is right for every family dealing with their child's differences from peers.  This is right for us.  Brycen participates every year when I am talking with/reading to his class.  He "models" his compression vest while I explain what it is for.  He "role plays" with me about how to give him choices.  He knows he has Autism, he knows the word.  He may not be able to communicate much to me, but not once has he ever acted embarrassed or shy when we've talked about Autism.  The fact he participates in these "talks" with his peers every year & doesn't get upset, shows me that he WANTS us to do this.  That this realism & honesty we have with his peers is benefiting both him & them!  

The honesty & openness with his peers is obviously paying off!  We have yet to have a teacher tell us since he started school that peers are treating him differently.  He has never been teased to our knowledge, though I have heard many of his peers at this age talk about this happening to them already.  If anything, it's the complete opposite.  These kids are encouraging him to do better. And in return, he is showing them that it's ok to be different and a friend to everyone. In fact, I just received an email from his general education teacher last week letting me know just the impression he has made on these kids!  Not one, but TWO of his peers took information about Brycen home & wanted to do something special for him.  Both asked their parents if they could bring some of their own train books into the classroom knowing how much Brycen loves trains. The parents then communicated with the teacher to make sure it was all right that they did so.  These are 3rd grade children!!  

So if we have any advice for those parents who are just beginning this Autism journey, it would be to be open & real with those who will be around your child the most.  Arm them with knowledge & tools of how to be a friend to your child, don't expect them to learn it from someone else.  It is YOUR job to educate, advocate, and make the difference in YOUR child's life!  I promise, it will be worth it when you see how your child is accepted as just one of the kids, even though the differences are obvious.

Monday, January 26, 2015

Where Has The Time Gone?!

My last post was May 2013.  Almost 2 years ago.  So much has changed, yet so much has remained the same.  Where did the time go?  Where do I even begin to start updating?  Be patient with me as I figure this all out and start blabbing about this amazing kid, Brycen.

Let's start off with explaining that once again were transferred for the husband's job.  It had been awhile...3 1/2 years to be exact.  So we knew it was going to be coming since that's the nature of the position he is in with the company.  While parts of this move were very hard & emotional, it has ended up being smoother than we could ever imagine.  It was hard for both kids to leave the school they had attended for over 3 years, the many friends they had, the life we had built all around us.  But if Autism has taught us anything in the last 6 years, it is that change CAN be good!  This change ended up being very positive.  The kids transferred to the new schools with ease (they have been there for two months now), we live close to my brothers & their families, we have a safe & large home that we all love, the husband's work is great, and we are surrounded by people in the community that have made us feel at home.  We are very very blessed!

Onto the specifics about Mr. Brycen!  

He is now 8 1/2 years old & in the 3rd grade.  

He is reading, writing, spelling, doing math...everything his peers are doing!  He continues to receive intense special education instruction, yet this new school's philosophy aligns with ours in that he is now mainstreamed and had a 1:1 associate hired for him about a month ago.  He does the same type of work his peers do at the same time they do it...it is just adapted to his level of learning and he has constant support built in.  
He continues on a gluten free diet though we have never tested him for gluten intolerance/sensitivity.  In order to that, we would need to reintroduce gluten into his body for a few weeks before they can test.  And given his reaction to when he eats something that has been contaminated with gluten, we don't feel it is necessary to put him (or US!) through that for weeks!  We know what works for him and that is all that matters right now.  

Brycen has also progressed in many areas of his development.  He continues to use a communication device AKA "talker", yet he has begun to verbalize more sounds & words that those who are close to him can understand.  While he is nowhere close to being considered "verbal" or holding a conversation, he has definitely made progress!  

His aggression has decreased tremendously.  At home, we mostly see the aggression in response to not wanting to do something or when he is just mad and can't figure out how to say it.  At school, he has had only a couple incidences this school year and one was because he was angry about having to do something, others because he was trying to communicate to someone that he wanted their attention.  Compared to the dozen or more acts of aggression we were seeing PER DAY two years ago, I would say we have reached a "normal" for someone who has a hard time communicating what they want & understanding the world around him at times. 

He is sleeping through the night most nights!!  Yes, after 8 years of battling sleeping issues, we finally reached the point where we are all getting sleep.  Amazing the difference in all of us!  We did seek out expert opinion at the Center for Disabilities & Development for this issue last spring.  While we were doing some things correctly to help him in this area, we definitely had room for improvement.  It took a couple good months of being firm, following the strict rules, and frustration...but we finally saw the light at the end of the tunnel recently!

He still LOVES trains, but has moved onto many other areas of transportation as well.  He enjoys playing with, watching movies & reading books about tractors, race cars, planes, boats, etc.  But Thomas the Train & his friends will always be #1 we think.  He loves to be outside, ride bikes, swim, go bowling, ride in the car, go out to eat, play UNO, and many other things.  He is learning responsibility by having to put away his own clothes, cleaning up after himself after meals, putting away clean dishes, and many other chores.  

Most importantly, he is still Brycen!  Our loving, giggly, & funny boy!  We can count on him to challenge us in ways we never imagined, and be the bright light in our lives that reminds us how blessed we continue to be.

Saturday, May 4, 2013

The Best Decision for Brycen: Beginning the Gluten Free Journey

Wow, it's already May!  The kids have less than 3 weeks left of school and then we will have a 2nd grader & a kindergartner!  I know we've been MIA the last few months (Ok, so it's more like the last 7-8 months!), but life has really just been moving along fine.  Brycen has stayed stable in so many areas or progressed further than we could imagine in some.  Unfortunately, recent behavior has pushed us into make some more decisions about what is best for him.  Not that decisions aren't made daily/weekly about his services, medical appointments, schooling, etc...but this is more of a decision that will affect a lot of his life.

I'm going to back up a bit & give you some background on what has been happening.  Brycen has always been aggressive as most of you know, but it has mostly been in the home environment or maybe with his teachers.  A few months ago, Brycen began showing aggression towards his peers at school.  It was a very emotional time as I worry he is going to not only hurt someone, but jeopardize the relationships he seems to finally be making with his peers.  If they see him as wanting to hurt them, they may not want to be around him as much or be as understanding of the differences in his behavior like they have been before.

The hitting started very minimal with peers and seemed to be focused on a few little girls that Brycen seems to really like.  Sometimes it would be at their lockers or outside at recess he would push someone.  Even more tools were put into place to help him with his communication as we understood this seemed to be the reason for his aggression & wanting to get their attention.  As the weeks went on, the aggression worsened and seemed to be for no reason, not even when he was angry, as well as increased when he was angry and trying to escape from doing something/expectations with his teacher/associates.  Some days/weeks were better than others, but it really came to a head this last week.  At his recent IEP last month, we implemented a new behavioral plan with a positive reinforcement system.  Every time he would hit or show sign of aggression, he received a ticket for his pouch hooked to his belt loop.  He also has a "break" card and a "I have something to say" card attached.  He always has his "talker" with him, as well as some extra communication magnets on his locker if needed when he was there.  His behavior was tracked over weeks and when he didn't show the aggression while the AEA specialist was there, they actually tried to irritate him by changing his schedule, etc to bring out the behavior to observe the whole situation.  Some days this didn't even work, other days he was very aggressive.

After hitting 8 times before noon on Wednesday, and 15 times before noon on Thursday, it was obvious something more was going on.  We decided even though doctors in the past have said Brycen has no signs of gut issues and that GF/CF diet was not recommended at that time, we decided after seeing many parents report decrease in aggression after following the diet, it was the next necessary step for Brycen.

So just like I am with everything I put my mind to, I threw myself into the new decision fully!  I immediately talked to the teachers/associates, checked out books, asked for opinions/feedback from my ASD mommy friends, went shopping & armed myself with as much as I could in just a few hours.  I decided we needed to start immediately with GF at home, and slowly work it out of his school environment.  If GF by itself does not show an improvement in a couple months, we will look at adding CF to it.

The bad news is our checkbook is taking a hit while we stockpile the necessary things to get started on this diet (right now, it will only be Brycen on it, not all 4 of us), the great news is Brycen is responding well to the change & eating everything we have given him.  He has his own shelf now of foods to choose from, as well as his own meats/breads in the freezer.  It will be a challenge as we move into the next area of how he will be able to eat-out & not jeopardize his GF diet, as well as visiting other's people's houses or birthday parties, but we will figure it out. We really have no choice but to try this for Brycen!  We want what is best for him & will do what we can within our means to do so.

We will be using the blog as a way to track behavior over the next weeks/months, and hoping we will see an improvement soon!  Thanks for following his journey!

Autism and Our Family

"Autism"----It's one word that can change the life of a child and family in so many ways. Autism Spectrum Disorders are being diagnosed at a rate of 1 in 68 children currently. If you do not already know someone that has been diagnosed, the statistics say it won't be long before you do.

Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!

Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.

We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.

Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.