"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.






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.