"A FRIEND LIKE ME"

This poem was shared by a special friend on FB who also is the parent of a child with Autism.

A FRIEND LIKE ME

Please don't be afraid of me
I want to be your friend.
And if you get to know me
Your rigid thoughts might bend

Thoughts that I am different
From others that you know,
I really am no different
And this I'd like to show

I live and breathe and laugh and cry
I love to play and learn,
I sometimes do things differently
Which can cause some concern

You see, some say I'm special
I guess this much is true,
But if you were to ask me
I'd say you're special too

We're all a little different
No two are just the same,
It's really something wonderful
that way there is no blame

When things don't go just perfectly
And others get confused,
And say things like "poor child"
and other terms they use

It's okay if you look at me
And might not understand,
It's okay if you touch me
And even hold my hand

My life has many obstacles
Much more than you could know,
But that's not what I dwell on
I'm me, that's all, and so...

Please don't be afraid of me
I want you just to see,
How truly great and wonderful
A friend like me can be

written by Tracey Porreca

~Brycen's 2011 Year End Summary~

2011 has been a BUSY year for us, especially Brycen!  As I was compiling a list of his "success stories," I am once again in awe of just how far he has come in so many areas.  He is a special little boy that has so much determination to keep up with his classmates and he has shown every single person in his life not to underestimate his ability to do so!

Created by Mallory Hinkeldey

Success Stories of 2011

1. Began wearing an ID bracelet
2. Adding the medication Fluoxetine is to decrease his repetitive and anxiety behaviors.
3. Completed genetic testing
4. Received his Alt-Chat communication device
5. Began verbalizing the letters of the alphabet in and out of order, as well as spelling a variety of simple words and our names.
6. new word approximations and signs
7. successful move with Mike's job promotion
8. counting on his fingers, writing numbers, counting objects
9. successful dental procedure requiring tooth extraction and anesthesia
10. learned how to pedal his bike
11. began riding the bus home from school two times per week
12. started kindergarten and is successful in the general education room with the assistance of a 1:1 associate
13. expanded length of therapy appointments, frequency, and added Physical Therapy
14. Writing his name independently!
15. Team Brycen 2011 raised over $5000 for the Iowa Walk Now for Autism Speaks in June
16. Learned how to undress and dress himself almost independently
17. Increase in imitation skills

2012 Goals for Brycen & Family

1. Continue to work on understanding safety and decrease his running from us while in public
2. Expand our fundraising to include more activities in April for Autism Awareness Month
3. Create Team Brycen 2012 and set a goal to raise over $5000 again
4. Continue to work on potty training by developing a routine in conjunction with school
5. Program more "functional communication" buttons on his device so he can have mini-conversations
6. Work on decreasing aggression
7. Work with OT on addressing sensory concerns such as acquiring a weighted-compression vest
8. Sleep!!!
9. Encourage appropriate play and socialization
10. Encourage more independence in daily tasks

We are looking forward to a fabulous 2012 and know his success will continue!

"The pessimist sees difficulty in every opportunity. The optimist sees the opportunity in every difficulty."
Winston Churchill

Loss for Words...

There was a knock on the door about 15 minutes ago.  As I went to answer it, I was racking my brain on what I had recently ordered that was being delivered or who would be visiting during nap time.  I saw the UPS man getting back in his truck and then saw a package outside the door.  I recognized the return address as that from Ohio and then saw an RA# written on the box...and realized it was Brycen's DEVICE BEING RETURNED!

Tears, tears, tears!  It was like deja vu from the first time his device was delivered last Spring and the tears were pouring then and my heart was racing just as fast.  Only a special needs parent with a child that is nonverbal or has a very difficult time communicating will truly understand why these emotions took over. 

As you know, 9 days ago, Brycen decided to see if his device could "swim."  That's a pretty nice way of saying he took it upon himself to move so fast that nobody could stop him while throwing his device into the Y pool.  I'm a very anxious person and can easily get upset over stuff like this...but for some reason I was very calm that night and the following day until we knew what the outcome would be.  I really do give credit to my anxiety medicine that I started several months ago to help me with this. 

Just 7 days ago, I took the device to the nearest FedEx shipping store 25 miles away.  We had found out his warranty would cover the incident and it would be fixed, so I sent it out to Ohio on 2 day shipping.  Once again, only a special needs parent of a child that is nonverbal will understand the tears that came this day as soon as I walked back out to my car.  I felt like I was handing part of my child off to the lady at the counter...and in a way, I was.  I was handing over my child's "voice"...the one thing that has seemed to slightly help bridge the communication gap between him and the world around him.  I called Mike on the road and explained this to him...and I think he thought I was going crazy!  But I wasn't going crazy...I was trusting some strangers with a huge part of my child's life...a part that I have been protective of for the last 7 months and will continue to be.  I was saying "goodbye" to it without knowing how long it would be before we would get it back...and without knowing how much the absence of the device would affect Brycen. 

Fast forward to today...9 days post "swim" and 7 days post "goodbye"...and it has found it's way back to us!  The notes say that certain parts of the board was replaced, new software was downloaded, and everything was tested.  As I turned it on, I realized they had been able to save EVERYTHING!  His "voice" is back right where he left it (even though I also had most of it saved on my laptop and could have transferred it, but this saves me so much time!). 

Once again, my thanks goes out to the wonderful company of Saltillo!  After years of working with various devices, no tech, low tech, and high tech in my job...and after much thought and research of devices/companies last year, we chose Saltillo for this journey with us.  Since Day 1, we have been nothing but impressed with their services, and of the service of our rep Sue through TalkToMe Technologies.  The software is easy to understand, the device is easy to operate and program, the instruction book that comes along is easy to interpet and follow...and best of all their customer service at Saltillo and from Sue/her coworkers has been phenomenal!  I can't say enough good things about them and encourage anyone that is thinking of a device for a loved one to contact them.  Words aren't even adequate to tell them how thankful we are to have chosen both of them to journey through all of this with us!    THANK YOU!

http://saltillo.com/
http://www.talktometechnologies.com/

One More Step Towards Independence

It's been a long time coming, but I finally took steps towards having Brycen ride the bus home from school (special needs bus).  Today was the first day...and he LOVED it!  He will only be riding home two afternoons per week as I pick him up early the other three days for therapy appointments.  I'm not having him ride in the morning either as I have to take Aubree to preschool Mon-Thurs anyway...and he has therapy on Friday mornings first before taking him to school late.  I think two times per week is a great step in the right direction.  Not only for him getting this experience being independent from Mom and for keeping up his enjoyment of the bus after the last couple years, but also it's baby steps for me to realize he is growing up and I need to be more confident in his abilities away from me. 

Here comes the bus!!  Mommy was so nervous.

Seeing him come off the bus and reach out for me was one of the best feelings in the world!  It was another time where I just saw a little boy coming home from school...not a little boy who is battling so much in this world.  Since I wasn't sure how he had done yet, I did not attempt a picture of him getting off the bus today.  He followed me up the driveway babbling with his own little noises, smiling the whole time.  He continues to do the "thumbs up" every time I mention the bus to him and how great he did.  I think he's reiterating that we made the right choice:)

He was babbling away as if he was telling me a story about the bus.

Can you find the number? Brycen's recent accomplishment!

When I visited Brycen's classroom yesterday morning to check on how he was doing without his device, one of the associates was excited to share that Brycen did great participating in a group activity in kindergarten that morning.  My understanding is the teacher would say a number (and letters too I think) and the kids would write them...Brycen on his dry erase board.  We know that Brycen can write almost all of his ABC's legibly, not only in capitals but some in lower case as well, but we had yet to witness what he could do with numbers.  We recently programmed a section on his device for counting and had included buttons through 10 so he could "voice" how many of something when he is counting on his worksheets.  We had never really worked at home on much above 10, nor had we worked on writing the numbers.

So of course we had to practice at home so we could share all of it with you!  The first time I practiced with him, I just held up a card with the number and he copied it.  Then when Mike was home last night (prior to Brycen getting sick today so he was still on top of his game!), I brought out his binder with the numbers 0-20 that I had printed and laminated on Monday night.  Before I could even show him one, he started writing 0...then 1...then 2...all on his own.  He kept going with just prompts from us "What is next?" and pointing to other parts of the paper for him to write on so he wasn't overlapping so much.  He made it ALL THE WAY to 14 before he was stumped!  So, then I showed him each picture individually from 15-20 and he copied the rest! 

Can you decipher this?!

Isn't that 8 cute?!

All over the place but you can see 13 in the middle, then 14 and 15 and 17 pretty clearly on the right side.  The 16 and 18 were overlapping the 13, but 19 is in the middle on the bottom and 20 is on the top left.

The Alt-Chat CANNOT swim, Brycen!

As most of you already know, Brycen decided to see if his communication device could swim the other night at the Y with his staff.  Yep, he took it upon himself to grab it from the bench and throw it into pool!  We of course will never know why he did this...he wasn't mad or anything, probably actually excited because he was getting out to dry off to go to McDonalds for dinner.  All we know is that Autism has prevented Brycen from developing impulse control and understanding of his actions. 

After quite a few hours of worrying how it was all going to work out to replace it, we did find out yesterday that the Saltillo company WILL fix/replace it under his warranty!  There was never a question about us not wanting to replace it...if we had to go on a payment plan, eat ramen noodles for months, ask/plead for money to borrow from our family...we would do anything to fix his "voice."  Lucky for all of us, we chose a fabulous and understanding company to partner with us in this communication journey and the only cost to us at this point was to pay to ship it back to Ohio (which I did this morning by FedEx).  Now we just wait and see how long it will take to get it fixed or have a new one sent to him.  Transferring the programming will be simple because I frequently updated the software on my laptop with what I was programming on his device so all I will need to do is flashdrive it over to the new/fixed machine.

Thank you for all of your prayers and support through that rough 24 hours!  As upsetting as it was, we know it was not an intentional thing that he did.  We don't blame him...we don't blame the staff...we only blame Autism and what it has stolen from him.  We are so grateful to be able to supplement his life with a "voice" like his Alt-Chat provides for him!  We are grateful for a company that has exceeded all of our expectations in the 11 months since we started this journey with our technology rep. 

Advocating for Brycen

First of all, this post is NOT meant to offend anyone or to speak ill of anybody that works with Brycen.  Ironically, my "give thanks" post for Day 4 of November on Facebook this morning was to say how thankful I am for everybody that has worked with Brycen in the past, present, and will in the future because he would not have as much success as he has if it wasn't for the entire team that surrounds him.  With that said, I am very upset today.  Typically when I am upset, Mike is here to be the calm person but it must show something because he is upset as well with this situation.  Again, I am not writing this post to be negative towards anyone that is a part of this situation, but this post is meant to ADVOCATE and INFORM about my son and his abilities.

I understand that not everybody that works with him today has understanding of how far Brycen has come.  That is the point of this blog...to share his progress or deficits.  We are very involved parents with Brycen and his services and I expect to be updated as much as possible as well as I have expectations of myself to also update those who work with him as much as I can.  I want an open and trusting relationship with everybody that surrounds him.  I want those people to also become advocates for him and for all others with disabilities.  I hope that everyone that works with Brycen can learn something new about Autism.  Once again, that is why I am writing this post.  I need to emphasize this!

At school, they do frequent fundraisers to raise money for a parent committee that puts on events/activities throughout the year (this is my understanding of it at least).  Though we do not have a lot of money with being a one income family, we try to support the schools our kids attend as much as possible because we know how important a good education is and how much schools rely on assistance from the parents.  The recent fundraiser consisted of the children drawing/coloring a picture that could then be put onto multiple items to be ordered with proceeds going towards this committee.  A wonderful idea!!  We already have an annual tradition of creating a snowflake ornament for our own Christmas tree and the grandparent's trees with a meaningful picture of the kids during that year.  I thought that using this fundraiser to do something extra special for the grandparents would be a great addition to gifts this year and I was so excited about it. 

When Brycen's picture came home, I immediately noticed how not much resembled Brycen's skills in this area.  A year ago, it was very difficult to get him to even sit and color at all.  We encourage drawing at home a lot and frequently have pictures taped all over our house of what the kids have made.  It's not that the picture was bad at all...it was very colorful and cute of a fish.  But the details on the picture were obvious it was not Brycen's doing.  Brycen has difficulty right now with writing the letters of his name smaller than two inches, but this picture had a hundred or so very small circles as the scales on the fish.  The colors on the fish were in the lines...Brycen prefers to scribble all over the picture and though he tries to stay within the area of the picture, he has never understood staying within lines.  I knew immediately that he received some (a lot) of help with this picture and that disappoints me because I want to showcase what he can do...not what someone else can do.

The "pictures" my son draws or colors are perfect to us!!  I'm not sure if the people that were working with him on this project though that we would want something that looked more like what other kindergarteners would have, but I would hope we have set the stage this year to show that we are so content with any progress Brycen makes.  Do I need to remind people that he has REGRESSIVE Autism?!  He used to speak, used to color, used to play appropriately, used to interact with peers and he lost ALL of it...so any step we can make towards that again is a HUGE step in our book.  We aren't here to make Brycen into the next President of the United States or a talented brain surgeon.  We want Brycen to be Brycen...and of course encourage him to continue to succeed with the abilities he has.  Brycen is able to do many many things...more than we will ever know because communication is such a key part of most abilities and unfortunately communication is his biggest obstacle so he can't share with us what he knows.  I don't want Brycen to go with the flow...I want him to be challenged using the skills he has to overcome the deficits he has. 

We recently learned he can draw a simple train.  WE had to think outside of the box to realize a train consists of mostly shapes he can draw.  So we encouraged him to draw using this knowledge...and lo and behold a train came from it!  WE need to adjust our thinking...WE need to encourage him...WE need to advocate so he can be the BEST BRYCEN HE CAN BE.  And if that means he could only handle a few scribbles the day this project was completed, that's OK.  That's valuable to us...that depicts who he is and what he can do.  Whether someone else things that is imperfect, then that's their problem.  Obviously you can tell we will not be ordering an item with this picture on it as wonderful of an idea as it is.  That's unfortunate because we were willing to spend the little money we have on this fundraiser too.  But I just can't fathom putting Brycen's name on something that is not his work...something that would be a part of his grandparent's kitchen or living room for years and years.  Maybe not all parents feel this way, but this is how we are.  We love our children and the uniqueness they bring to our lives whether it's a scribble or not!

We are not only Brycen's parents but we are advocates for he and many others with disabilities.  A key to working with those with disabilities is to acknowledge they have some deficits/differences and then to search for their talents and abilities to help them work through those deficits/differences.  Heck, isn't this the key to working with anyone?!  Nobody is perfect!  I am here to advocate for my son for the rest of my life.  It's not a paid position like my old job when I worked with others with disabilities...it's a volunteer job that gives me far more than I could ever receive from a paycheck.  Because of Brycen, I have passion, motivation, patience, and emotions that I never knew I could have.

WE THINK BRYCEN IS THE MOST PERFECT BRYCEN HE CAN BE!

Visiting School!

Wow, it's been a few weeks since I updated Brycen's blog!  We've had some good and some not-so-good moments in that time.  I just need to keep reminding myself that the stressful days seem fewer and farther in between compared to a year or two years ago...but it still really brings me down when we have a morning like we did on Monday this week.  I really think the hardest part of dealing with Autism with Brycen is the lack of communication.  I know some kids with Autism slowly begin talking, but it's just not looking so positive for Brycen in this area so our main focus is to encourage ANY kind of communication such as sign language, gesturing, or his voice-output device.  It's not that we are giving up on him ever being able to learn to vocalize, it's just there is not time to wait around because we are all getting frustrated not understanding his needs and wants.

Today, I went to the school to visit Aubree's classroom during their Halloween party.  Those 3 yr olds were so adorable in their costumes and were so excited to show them off!  Oh, to be young again:)  When her class visited Brycen in his room, he actually seemed excited to see them...and Aubree of course was excited to see Brycen "There you are, Buddy!".  She loves her brother so much despite some of the trauma he puts her through!

I decided to spend some time in Brycen's classrooms as well while I was there.  I have held off doing this as I'm never sure how he'll handle me being in his school space.  Because he is so literal, I expected him to not understand why his mom was coming into his classroom for awhile.  But he did fabulous!  I saw him briefly during the costume parade and then snuck into the Kindergarten room when they were doing a group activity on the rug.  He didn't even know I was there for the first few minutes!  Some of you that have been following Brycen's journey over the last 2+ years probably remember me talking about how he wouldn't even sit on the rug during circle time during the beginning of his first and second years of preschool.  I'm not sure the teachers/associates understand just how exciting it was for me to see him actually on the rug, watching the activity, and even taking his turn to participate willingly...because I compare it to two years ago when he just wanted to wander around the room or line things up and not join the circle time.  I watched him wash his hands when he was told to, sit down and do a worksheet like all of his other classmates, stand in line for lunch...all HUGE accomplishments.   Just like Mrs. H told us at conferences...he really does seem like one of the kids and not different in so many ways like I had imagined. 

I then followed him over to his sp. ed. room to get his lunchbox and wait for his classmates there to get ready for lunch.  I had heard yesterday from another mom at the therapy clinic (pretty much all of the kiddos in this room also attend outside therapy at the same clinic) that Brycen has taken a liking to her daughter "M."  I watched as Brycen waited for "M" and he got close to her and looked back at me like "Here's my friend, Mom!" and then helped push her wheelchair down to the lunchroom.  What a big helper he is!  Then he proceeded to get his own lunch items out and begin eating, opening up his sandwich container and chip ziploc bag with NO HELP!  I even commented about this and of course was reminded "He's in kindergarten now."  But I still see my little baby who just one year ago would NOT have sat in that lunchroom with all the other kids/noise, would NOT have had the patience to help push "M" down to the lunchroom, would NOT have sat at group time on the rug for 10-15 minutes, would NOT have stood in line without pushing/shoving, and definitely would NOT have tolerated having Mom in his business.

It was a wonderful experience to visit him at school for that time and I know it probably seems like such little things to some parents, but seeing him in this environment, being independent, and THRIVING is wonderful...of course comparing where we were two years ago...even one year ago.  I am thankful for all of the patient teachers and associates that give him the attention he needs over these last couple years.  I am thankful for the students who seem to accept him as just one of them.  I am thankful that even if he is not communicating verbally like we really hoped he would start doing, he seems to be succeeding in so many other areas that two years ago seemed impossible!

Sneak Peek into Conferences

Here's a little "sneak peek" into some of what will be discussed at Brycen's school conference next week with both of his teachers, OT, and SLP:

These two graphs were sent home this week in Brycen's Progress Report envelope.  The top picture is the graph showing progress on Goal #3 which includes 1-1, counting sets, patterning, initial sounds, and read/identifying words.  The second picture is the graph for Goal #4 which includes following directions, completing work, routine, social interactions, and play cooperatively.  He is assigned a certain number of points for how much he can do in those individual areas...and then the points are added together to get his total number for each goal. 

You can see that the goals are showing a start date of mid-September because we did an informal meeting a few weeks ago to adjust the graphing/documenting of some goals.  The gray line going vertical with the blue dot shows the baseline that was taken at that time...then you can see the red broken line slowly going upwards as the months go on.  That is the progress we are aiming for.  The best part of these is the blue dots a little higher...that means the data that was just taken shows that Brycen is already above the "aim line", therefore exceeding our expectations in overall points for each goal.  The documentation is set up where some of the items in each goal may be hard for him, therefore getting a lower point value for that one...but others may be easier for him which means that would have a higher point value.  So the general consensus is he is doing great, but of course there are some low scores in some areas that will need more attention to keep this going!

After conferences next week, we will update you on what those areas are and how everything else is going at school!

Field Trip

Today I (Mike) had the pleasure to go with Brycen on his first field trip to the zoo.  I was assigned to lead Brycen and his new friend. Unfortunately his friend didn't come to school today so it was all on me. His friend had helped Brycen get over the hurdle of getting on the bus last week. Needless to say I was worried that without his friend, getting on the bus could become a problem. All the kids lined up,we were in the middle of the line, Brycen holding my hand, and the bus door was open. Off in the distance I could see Melissa sitting in her car watching to see if Brycen would get on the bus. I decided not to point her out to Brycen in fear that that might set him off, infact I said nothing, and then up the stairs we went!

Brycen chose the window seat, at that time I pointed Mommy out to him so he could wave at her and blow her kisses. Brycen looked out the window the whole way to the zoo just like he was riding in the car. I think Brycen loves riding the bus now!!! During the ride I explained to him periodically that we were going to the zoo to look at animals, infact he even imitated the word zoo by giving me a "ooo" sound.

I was assigned to be with Brycen and his friend, but since he didn't come we then joined another group. In that group a boy said he wanted to be Brycen's partner for the day, and off we went.
All the kids had a great time looking at animals but I know Brycen's favorite part was riding the train! We didn't do the train at first, we walked right by to go look at some monkeys, and Brycen had no problem with that! He would keep looking back at the train, and I would remind him that after we look at some animals we can ride the train.

When we were waiting for the train Brycen was getting a little anxious but when he heard that train whistle, his smile, and his excitement was priceless. He then had a little snack and juice during his train ride. He was willing to get off the train and continue to go look at some more animals.

At lunch time we all got back on the bus (with no problem) to drive to a park, to eat, and play! When we got to the park, lunch was first, and Brycen sat with about 6 of his classmates. His classmates would say things like "Brycen is sitting by his Daddy" or "Do you think Brycen can outrun a Cheetah?". His classmates want to interact with him but in that setting it is hard when Brycen can't talk to them, but it was great to see that he isn't ignored or forgotten!!!

After lunch it was playtime at the playground, organized chaos with all those kids, sometimes that means trouble for Brycen. The only sign of trouble was the line to go down the slide, some boys would budge infront of Brycen, when Brycen finally noticed that this would occasionally happen he took matters in his own hands. Brycen shoved a boy down, I then had to redirect him, and another teacher grabbed the other boy to tell him to wait his turn. Brycen can't exactly tell the kid "no its my turn" so he pushed him. We have to try to teach Brycen another way to "stand up" for himself without resorting to violence.

Brycen then got back on the bus to head back to school. He had a great day, and his Dad is so proud of him. He spent all day intergrated in his general education kindergarten class on a field trip to a zoo and a park! He simply amazes me, he has overcome so much, today was just another example of how great my son Brycen is!!!!!

Once again...

Once again, Brycen proves his strengths to us!  I know I've shared before that it seems like we will experience a very negative event or behavior with him, to them have something very positive follow shortly after to keep our heads high.

Last week, Brycen had a very rough time.  He had just had his tooth removed and I think he was experiencing some side effects from his body still trying to rid of the anesthesia as we had been warned about.  It was an exhausting week, both physically and mentally...and I spent the weekend just hoping this week would be better.

This week, we found out he has a little friend at school in the kindergarten room...and tonight he rode his bike for .8 miles on the sidewalks around town.  We had taken him to a parking lot across town away from busy streets to practice riding...and he was doing so well steering and continuously riding that I told Mike I wanted to try to walk part of the way home with him on the sidewalks.  So Brycen and I set off...he on his little bike with training wheels and I on foot following and encouraging him.  Mike & Aubree would drive around checking on us and Aubree would shout "Go Brycen Go!".  An older woman and older man that was outside commented how great he was doing...and he even waved with prompts to two other people outside of their house.  He would get distracted by a car driving by, or a dog barking, or the smell of someone burning wood in their fireplace, but he would get back on track and keep riding like a pro.

After .8 miles (Mike drove back to check the distance), he was beginning to wear down and was making a lot of noises and stimming, so I decided it was time to stop.  How amazing for him to make it that far on his first real bike ride?!  I am looking forward to future times with him on the walking path near our house...and next year he can even take his bike camping with Grandma & Grandpa like other kids his age do.  Tonight was a moment I will never forget!  This special time with my son will be etched in my memory and cherished.  I fell in love with him all over again tonight as I watched in awe of his determination to learn and succeed!

Mom & Dad

As most of you know, Brycen has not clearly said "Mom" or "Dad" for quite a long time.  I have not heard "Mom" since when he first began regressing over 3 years ago, and he lost "Dad" shortly after that so it's been at least 2 1/2 years for Mike.  We recently programmed both into his device hoping that would encourage him to imitate it better...and his SLP at the clinic is working hard on this each week.  We know Brycen understands we are his mom and dad, but it would be nice to hear it again:)

Last night while Brycen was "helping" Mike grill dinner, Mike was quizzing him on some letters as Brycen has been working on writing letters and shapes into the air.  To his surprise, Brycen was able to write "Mom" in the air...so then we asked him to spell "Dad" and he did so!

After dinner, we asked him to write them on paper.  We didn't have to tell him which letter came next, only needed to help him remember to put the little tail on the small "a" in "Dad."  What an amazing surprise after he had been having such a rough week!  Either someone has been working on this without us knowing, or the repetition from the written labels on the device buttons has helped him with spelling!  While writing this post, I kept thinking about how backwards things are with Brycen...he can write our names, but can't verbalize them yet.  We are trying so hard to use his talents to help him push forward instead of focusing so much on the the areas he has the most deficits.  Writing seemss to be a huge positive area for him!

"Heaven's Very Special Child"

This was posted on FB by a mommy friend that has a son with a disability.  I questioned God for a long time after Brycen was diagnosed, and now that I am beginning to accept how life is, I don't question God near as often anymore.  I was raised Catholic and Brycen's diagnosis made me question the beliefs I was raised on more than anything else.  I have recently begun attending church again and I find peace with going and thinking about the teachings of God after every mass.  I know there is a reason for everything, and I know that Brycen was given to us to show us how to be better people, parents, and to teach us compassion for anyone that may be different.  I have learned that judging and having rude thoughts and making rude comments about others is not fair to them, nor is it fair to my children who I am here to set an example for.  Brycen has changed me for the better!

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
 
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
 
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.
 
So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
 
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
 
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

by Edna Massionilla

My Heart Leaps...

My heart leaps with pride every single time I open Brycen's school bag to find a picture he colored or project he worked on in kindergarten...and when I flip that paper over, I find my son has written his name on the back once again.  It may not be able to be read by all, but I know it's his name...and I know how hard he worked to achieve this.

This is the first project that came home from school this year with his name written on the back.

I also LOVE when Mrs. J or an associate records a message for me on the device.  It may not be Brycen's real voice, but I know it's the next best thing to him being able to tell me about his day.

Thank you, Mrs. H, Mrs. J, and Brycen's associates for each of these gifts!  It means more to me than you will ever know!

Always Wanting More

Why is it that what we have never seems like it's good enough?!  We always want more...more toys, more money, more clothes, etc.  We can receive wonderful gifts and we still crave more. 

This is how I feel right now with Brycen.  I have been blessed with two beautiful and healthy children and a hard-working & honest husband.  While so much in our lives is moving forward and going the way we were hoping for, part of our life continues to just stand still. 

Two years ago when Brycen was diagnosed, I wanted for the pain to go away.  The pain that I couldn't make the Autism go away...the pain that I felt every single day when I heard another child his age talking...the pain of not knowing what his future would bring.

A year ago, I wanted for Brycen to be able to communicate.  For the screaming and hitting to go away...for him to feel like he had control in his world...for me to feel like I had a connection with him through communication. 

Now that the daily pain has gone away and we have found a means of communication for Brycen through his device, I can't help but want more.  Brycen (and we) have worked HARD these past couple years.  We are doing what we can within our means for Brycen that is being recommended to us and what we believe in.  Why does it seem like it's not enough?!  Others have seen such improvement with the exact same things we are doing...others that are younger than him are improving faster...even his own sister two years younger than him has flown past him in almost all areas of development.  Will it ever be enough for me?  Am I setting my standards too high for him?  Am I just not accepting what God has given us? 

I have so many wishes for Brycen and for us.  I wish for him to be able to communicate better and decrease his frustration.  I wish to hear "I love you, Mommy."  I wish for him to have a friend to play with.  I wish for him to be able to participate in extracurricular activities like other kids instead of heading off to therapy three days per week.  I wish for him and his sister to be able to play in the same room without him being aggressive towards her.  I wish I didn't have to repeat myself so much to him.  I wish I didn't have to plead with God every day to give me the patience that Brycen deserves.  I wish I didn't have to count up service hours, sign papers, make phone calls, etc most days of the week.  I wish...I wish...I wish...could go on forever.

Just because I wish for more for Brycen, does not mean I don't accept him for who he is and love him any less.  I just wish some days could be easier...and that some days would seem like Autism is not running our lives. 

I just want MORE for Brycen.  I won't stop until I can give him more...and though it may never seem like enough, that will be what pushes me to give him even more than what we thought would be enough.

Go, Brycen, Go!!!

What a wonderful surprise to come home from church to find Daddy & Brycen outside on the sidewalk with Brycen's bike.  As we drove closer, I could see those little legs pedaling away...and Daddy not even helping!  This video was taken by me in front of our house.  Unfortunately, Blogger would not allow me to load the other video of him riding towards me, a little uphill so he does pause or accidentally applies the brake and needs a little nudge from Mike to keep going.  This video has been loaded onto our FB pages instead.  The second video which Blogger did allow me load below is of him riding to the corner which is slightly downhill...and you can see he gets some momentum and Daddy ends up having to run next to him.  We are so, so, so thankful for the hard work of the physical therapist in the last few weeks to help him get to this point!  She knew that he had the ability to do it, but just needed the extra encouragement to realize it and knew it wouldn't take long.  I don't think any of us thought he would have come this far in only a few weeks!  Once again, just when certain things can bring us down, he pulls through with something amazing that keeps our momentum going in this fight.  We will NEVER take for granted these things!

NEXT UP, RAGBRAI 2012!!!!

Brycen & the Dentist

Brycen had his dental procedure completed this morning.  He did awesome and we have noticed no side effects from the anesthesia to this point.  Unfortunately, the tooth could not be saved (it was a baby tooth in the back of his mouth), but we did find out that the dentist is almost positive there was a developmental defect in the tooth where the enamel did not form properly so it really couldn't be prevented. 

Brycen getting sleepy after the oral meds.

Brycen's tooth that was removed...the top
had a huge hole with the nerve showing.

We're not sure how much Brycen understood of our visit to the hospital, though we do know the oral sleepy meds they gave him shortly after we arrived has an amnesia effect which prevents him from remembering the need to hold him down for it or anything else.  Once he was in the "operating" room, he was given a small amount of gas in front of his face to put him to sleep further.  Then they were able to administer the rest of the anesthesia through an IV in his foot.  He came out of the anesthesia great...and was even a big boy to sit on the bed to be wheeled back to us in the private room.  He did start to cry for a few minutes, but calmed down within 10-15 minutes and was ready to watch YouTube train videos while we waited to be discharged.

Being wheeled back to us after recovery.

Watching YouTube train videos while waiting for discharge.

Due to it being his back tooth that was removed, he needed a spacer inserted to prevent his 6yr molars from coming in crooked.  Unfortunately, the spacer is something that might bother him and could possibly pry away from his gums if he wanted to.  If he does that, we are to return to the dentist to have her check on it, as well as the next sets of molars will be watched.  If they do come in crooked, he may need a future procedure to have those removed as well to prevent further problems.  Otherwise, we are in the clear until his next appt in March.

As of right now, I understand that he still needs to be watched over the next several days as he may have some hidden side effects to the anesthesia such as regression.  We are not seeing anything right now, but since Autism is a neurological disorder, anesthesia can interact with the brain in other ways that it doesn't for the "normal" child.  Thank you to everybody who gave advice over the last few days as we prepared for Brycen's first time with general anesthesia!  I appreciate all the knowledge and support during a very nervous time!

Brycen's Newest Accomplishments!

Brycen has made some small but positive strides in the right direction in many areas this last week.  He is doing well at handling the full-time school schedule and the increased therapy schedule.  The therapists even mentioned adding a 4th session on Friday mornings later in September but we've opted not to do this as he would miss some important parts of the school day at that time.  We're really having to make sure he is getting the "best of both worlds" by getting 1:1 therapy on specific areas and socialization/routine with the school.  We are currently happy with the schedule we have worked out with both places and we will soon be adding SCL home services two times per week soon which will help him work on more socialization and community skills like safety.

One of Brycen's new accomplishments this week is drawing shapes in the air!  He is able to do a square, circle, and triangle...and will make a noise with each line.  I think this is a combination of both therapy and school helping this progress along.  He has been doing this more often during mealtime..he'll stop eating and just start drawing in the air.  He is working on so many things in kindergarten that I am programming many more things in his device each week for the aides/teachers to use.  Most recently, kindergarten is working on sight words.  I can't believe my little boy is working on reading!!  They have only worked on two so far, and of course reading is a little different for him since he isn't able to verbalize much, but having it programmed on his device allows him to participate when the word comes up in the book they are working on. 

The second accomplishment this week came in physical therapy.  He is now doing two sessions a week overlapped with one of his other therapies.  The PT that is working with him is so energetic and eager to work with him.  It makes me so happy to see how excited he is to see his therapists each time.  Our main goals in PT is for him to pedal a bike, as well as increase his muscle strength with jumping and balancing.  He was able to do one entire pedal around on the bike this week during therapy!  We took him outside today to work on more pedaling (as his therapy was cancelled today due to the holiday), and he was trying really hard to push each foot around.  He is just having a hard time knowing to push the opposite leg next.  We walk behind him and touch the back of each foot saying push and help him get started, then reach for the other foot.  It's exhausting!!  His regular speech therapist returned from maternity leave this last week also and he was excited to see her!  She commented about how far he had come in so many areas in the last 5 weeks...which of course made me glow with pride. 

The 3rd accomplishment this week happened this morning when he was getting dressed.  OT asked me a week ago to bring in a zip up and button up shirt for him to work on.  He was doing so good at the zipping and buttons that they wanted him to work on it from the angle of getting dressed, but of course Brycen wouldn't wear the vests they have at the therapy place.  While getting ready this morning, I encouraged him to pull the zipper up on his shorts...and he did it!  He even held the bottom of the zipper to hold it straight like a pro!  He was also able to do the button with my help to pull the shorts away from his waist so he could see it better.  He fumbles around a lot, but he shows so much more willingness to do it now than he did just a couple months ago. 

We are so proud of his determination and eagerness to learn!  It's amazing how much he really takes in from his surroundings and eventually will surprise us with his new abilities when we least expect it. Here is a short video of part of his "therapy" session outside today where we worked on jumping up and down the small step in the front of the house. 

My Son's Voice

I think it's fitting that the 200th post on Brycen's blog is about his "voice" considering communication is where he has the most deficits from Autism.  In a way, I am amazed at the number of 200, but then again there is so much to share about Brycen and how Autism affects us, that I'm a little surprised that number is not higher!

When Brycen was initially diagnosed, I wasn't even thinking about communication devices.  As you all know, he had quite a few single words and phrases prior to regression, so I guess I assumed once we began getting him the therapy he needed, those words would come back and then some.  Well, that's not how it worked for Brycen.  There are still many words that he used to say that he isn't even attempting to imitate at this time.  More importantly, he still can't say many words spontaneously and will only attempt them if prompted in some way.  Then when he does speak them, quite a few sounds are missing so unless you speak "Brycen language" you probably would not understand anything he is saying.

A little over a year ago was when we first began discussing a communication device.  His first school brought it up during his IEP in May 2010, and the initial device they spoke of was very very basic.  It used multiple cards that had a picture on the front and back...and on the bottom of the card had a strip that would be "read" by the machine when the card was placed on the machine.  The cost was under $75 for this device and it's cards.  We just weren't sure about it and about the benefits of having one yet.  We researched different machines over the next few months and saw that studies showed nonverbal children who used a voice-output device were more likely to start verbalizing than children without one.  Research also shows the earlier you implement the device, the better the results are. 

Fast-forward to the next school year and a new therapy clinic.  The new speech therapist that Brycen began seeing immediately began using the Go-Talk with him during sessions.  He was still using basic PECS at school and some at home as well.  Brycen caught on fast to the Go-Talk 9 so we began discussing what the next step was.  The SLP brought in two different reps to meet with us as she felt that Brycen would outgrow most of the lower tech devices fast, and we both thought a higher tech device would be best since we can program it to keep up with him.  In January 2011, we chose to go ahead with the Alt-Chat made by Satillo.  He responded fabulously to it during our 4 week trial period and we were blessed to have insurance approve it with no hesitation.  On March 23, 2011, my son received his "voice."  It was delivered to the house in a box that we will keep forever!

Brycen with his trial device.

Since that date, like research said, Brycen has begun to imitate more sounds and words, and communicate effectively with the machine.  We knew that to make the most progress, it was important that the device be used in all areas of his life...therefore his device goes with him to school, therapy, is out at home for when he needs it, sometimes to the store, on overnight trips, to doctor appts, etc.  Brycen knows that machine inside and out!  He can navigate the pages to exactly what he wants to say faster than any of us. 

Using his device to play CandyLand with Grandma

Recently, someone commented to me about how protective Brycen is of his device and my response was "You'd be protective of your voice too!"  The Alt-Chat IS Brycen's voice.  It may be man-made, but it has the capabilities of doing the exact things that your voice can do for you.  Just like it takes a child years to gain verbal skills with different sounds, it's going to take Brycen some time to learn all that this device is capable of.  The possibilities are endless!  Just like you have to sleep at night to "recharge" your voice to be ready for the next day, we charge Brycen's device in the evening so it is ready for him.  I remember losing my voice many times while having a cold and it was very hard to function.  I could not answer the phone and it was FRUSTRATING!  The same would be for Brycen and his "voice" AKA device!

"Fixing" Autism- YouTube video

Below is a link to a YouTube video that Mike's cousin sent me (Thanks, Nicole!).  It's such a simple video with a wonderful message.  A similar story to Brycen's about the initially meeting milestones, and then stopping and regressing.  All of those things on the cards are true...so much is a battle between therapies, funding, research, school, and so on.  It is my life to fill out that paperwork, to make those phone calls, to shuttle him to and from therapies, to file the neverending paperwork just to keep his services afloat.  The books I read, the college classes I took, and even the years of work experience I had never fully prepared me for what it is like to parent a child at Brycen's developmental level 24 hours a day, 7 days a week, 52 weeks per year...for the rest of my or his life. 
"Autism" may have silenced my little boy's verbal communication, but I can guarantee it is not going to silence our fight!  Brycen will be the best Brycen he can be!

http://www.youtube.com/watch?v=z2B1FeS5VX4&sns=fb

The First Days of Kindergarten

It still seems unreal that Brycen is old enough to be in kindergarten!  It is so true what they say that time goes so much faster once you have kids. 

Earlier this week, we took both kids to the school for their open house and to meet the teachers.  Leaving the house didn't go so well that evening as Brycen was not happy about going to the school.  He knew it just wasn't part of his routine going around supper time.  Once we got to the school and when Daddy met us there after work, he was much better and enjoyed being in each room.  Since he will be in both the special education room and the general kindergarten room, we had two teachers/rooms to visit, as well as the room for Aubree's 3 year preschool that will start in a week.

I knew that Thursday morning would be very hard for him...so I spaced the morning preparation out throughout the evening before and morning. I packed his bag the night before and showed him that and what he was going to wear. After breakfast, I then proceeded to getting dressed which was quite the challenge between the hitting and running from me. Aubree and I tried to get him excited with a "kindergarten" song in imitation of an episode of Curious George, but he just yelled at us more. Eventually he did put on his new school shoes and very reluctantly carried his backpack out to the car. As soon as he saw the camera, he took off running out the door and even showed me when he is mad enough, he can open the car door by himself! I was NOT ready for that yet (though Daddy disagrees and thinks it's a good milestone for him). As you can see below, I did finally get a few pictures of him but of course not typical "first day of school" pictures:(

Showing me his new skill of opening the car door on his own (while trying to get away from the camera)

Signing "all done" over and over as he really did not want to be bothered with the camera.  Isn't this morning stressful enough, Mommy?

FINALLY a decent picture after I had him trapped in the car and snapped it very quickly when he looked at me.

When I picked him up from school yesterday, he was all smiles!  Since daddy couldn't be with us, I took him to daddy's work so we could read Brycen's communication book together (and the teacher said there was a message on his device for us as well).  I attempted to ask him questions about his day, but he would just smile and look out the window while we drove.  This is the part that really tugged at my heart yesterday!

Today, he was all smiles this morning when I got  him dressed and ready for school.  He got out of the car in the drop-off zone and walked in with an associate with no problems.  When I drove into the line for pick-up, he saw my car and started pointing from the sidewalk which made me excited to see some emotion from him to see me.  Again, he of course could not answer my questions about his day though he was smiling again.  When we came home, his teacher had recorded another message about something he did today which I really appreciated!

I know this is a happy time in our lives with a new journey for him starting kindergarten, but it still makes me sad.  Not being able to tell me about his day, if he was sad or mad, what he liked best, what he ate for lunch/snack, and so much more.  I just always took it for granted that I would have those same conversations with my children like my parents had with us after we came home from school.  I really do appreciate the teacher attempting that communication with me though through his device as that does ease the pain a little.  I just wish it was his little voice I could hear telling me about the slide outside or playing on the computer!  I know that as the years go on, many of these types of moments will come up...and I know that the pain is never going to go away.  The pain is different now than it was a couple years ago.  It's not a striking, unbearable pain that overtakes my mind and body for days, weeks, months...but it's a dull ache pain that is just in the back of my heart that reminds me that things are just a little different than what I imagined my life as a parent to be.

If you are reading this and have school age children that can communicate to you, please take the time to talk to them about their day.  Don't take it for granted that they can tell you what made them happy or sad during school!  Then give them a big hug (just like I have done the last two days after picking Brycen up and getting home) and thank God for the blessings that we have all been given!

Physical Therapy: A New Journey

As some of you know, Brycen did not crawl until after he turned one and did not walk until almost 18 months old.  At the time, he was on track with all of his other development so it really wasn't a concern to the doctor.  About 6 months after he started walking is when he began regressing in all of those developmental areas.  He continued to have some issues with gross motor skills such as climbing stairs and jumping.  While he has come a long way in the last couple years with being able to climb stairs upright correctly (though his balance is unsteady at times or when he is carrying something) and he can now jump enough that both of his feet come off the floor slightly, he is still behind in so many areas. 

We have been so focused on his communication and other skills that we just hoped the physical skills would eventually come with some work at home.  His older cousin, Ethan, passed down a bike with training wheels to Brycen a couple years ago and Brycen absolutely loves it.  The problem is that he is 5 years old and still unable to pedal not only that bike, but a big wheel that he received a couple years ago also.  When we put him on the bike, he just rocks his body back and forth.  When we push on his feet on the pedals, he doesn't do anything.  So we just resort to pushing him around while he screeches happily for the ride. 

Last summer, we decided to get him a motorized tractor for his birthday that has a big button to push down with his foot to make it go.  Aubree was also given a motorized power quad for her birthday but the button to go is up by the handle so you just use your thumb.  We noticed Brycen still couldn't figure out how to push his foot down to activate the tractor though he did figure out how to use Aubree's quad.  Unfortunately, he is pretty big for the quad.  Fortunately, he doesn't seem to mind that he can't get his tractor to go and will just sit on it making those happy noises again! 

So over the last year, I have listened to parents talk about children younger than Brycen learning to ride a bike with training wheels and some even learning to ride without.  Some of these children also have ASD's and it reminded me about how he still can't catch on to pedaling.  It's like the wiring between his brain and his legs just isn't connected.  While he doesn't seem to understand all of this yet, I know that it won't be long before he notices other children riding their bikes around him.  I also remember riding a bike through my entire childhood...and to me it's a huge part of growing up.  Having a bike, learning to ride, enjoying the summer with friends!  Brycen has been missing out on so many things already that are a regular part of being a kid...and I refuse to add riding a bike to that list. 

This is where the new journey comes in.  I requested an order from his new doctor for a Physical Therapy evaluation at the clinic he goes to.  I already know who the PT is there and she knows Brycen so it wouldn't be a hard transition.  Tomorrow is the big day for the evaluation and since we've already talked a bit about it, she understands it's the pedaling, jumping, and balancing that he needs to work on.  To the public eye when we are taking a walk, it doesn't seem like Brycen has any obvious deficits since he can walk, run, etc just fine.  But we've let these "hidden" things go on too long now.  We thought it would slowly come, but after a couple years of working on this ourselves, he has made no more progress and it's not fair to him.  We aren't trained to be physical therapists, we are just parents that want the best for our son.  If that means we will be adding on a couple more therapy sessions a week until he catches up, then so be it.  While so many kids his age are out and about, riding their bikes and beginning to play in soccer and t-ball leagues...we will be taking him to and from therapy so he can work hard at learning those things that are supposed to come naturally to children. 

More of the ABC's!

 A couple weeks ago,  we noticed that Brycen was really starting to comprehend the order of the ABC's.  He is still doing awesome at attempting to verbalize each letter, as well as he now recognizes both upper and lower case letters.  He can trace all of the letters and write the letters in his name somewhat legibly with multiple verbal prompts (but without tracing needed).  We are working towards him writing his first name completely independently and I am confident he will succeed at this shortly after school starts next week.  My mom was working on verbalizing the ABC's with him recently and found that he actually does have the order memorized like other kids his age.  She would just ask him what comes next and he would pause before verbalizing the correct one.
Today, while Mike was home on lunch break and making his sandwiches, he told me to look at Brycen by the fridge.  Above is what we found him doing...slowly but surely he put the ABC's in order with the fridge magnets.  We are so proud of him and all of his progress over these last few months!  While we aren't hearing much more verbally from him, we are noticing so much more through his actions and responses.  He is taking in so much from his interactions with others and showing us that he is learning through moments like this.  He works so hard every single day to do these things, and sometimes we don't give him enough credit for what he really can do by himself. 

Brycen is FIVE!

Great day for Brycen!  It all started with a full night's sleep in the camper with Grandma and Grandpa last night which is always excited to do.  Then we had a little cuddle time this morning after they brought him home...Brycen, Mommy, and Daddy...before the sister woke up.  Brycen took turns rubbing our hair and giving us hugs :)  Then we started getting ready for his "party" with the grandparents...decorating the dining room and preparing food.

 

Then we mentioned presents...and it's so awesome to see that Brycen understands what that means.  A couple years ago, it was very hard to get him to sit down and realize they were for him and how to open them.  The Christmas before his dx, he would just pick up a present and sit it back down, maybe shake it a little, before we did mostly hand over hand with him to open it.  It's probably a very materialistic thing to say, but it's great to see his eyes light up like other kids when we mention presents!

We planned the presents early enough so that if he became overwhelmed, we could stop and restart after lunch.  He opened his handful of presents over an hour's time...opening one and playing with it a little bit before we moved onto the next.  We've just learned that he can get overwhelmed with even too much of agood thing, so it's better to take it slow and at the pace that keeps him content and engaged.


Brycen enjoyed lining up his new wind-up trains in multiple ways.  Side by side, in a straight line, on the floor, on the couch...over and over and over!




Grandpa and Daddy put together his new train track in his room and that is where he decided to spend the next couple hours!  He wouldn't even come back downstairs to eat lunch!  Of course, we decided to choose our battles and just let him eat in his room.  Since he hasn't been eating much lately and it was his birthday, we wanted to ensure he had a good relaxing day and give him a little more control over the routine. 



After lunch, we had a little downtime (sister needed to take a nap) before moving onto cake.  Spacing the celebration out was definitely good!  He was ready to engage in more interaction at this point and immediately came running.  He had yet to see what his cake looked like (Grandma made and decorated it), so his face lit up and he began flapping away when he saw the train track and a new James train!  He wouldn't even sit still for a picture for a couple minutes since he was so excited.  Once we started singing "Happy Birthday" to him, he couldn't wait until the end to start blowing out the candles.  Just in the last year or so, he has worked so  hard at this through blowing bubbles and was able to blow out all 5 by himself with some verbal prompting from Daddy (and a little spit on the cake).  What a big boy!!!  He had no problems with finishing his piece before heading back in to play with his multiple trains (3 new wind up trains from Grandma & Grandpa Timmer, James from his cake, and his new Polar Express set from Mommy, Daddy, and Aubree).


After a walk, SCL time with Grandma, and some homemade pizza for dinner, we went outside to play with his new soccer net and goal.  He knew exactly what to do!  It wasn't long before he began sweating from all the running, but the smile never left his face.  He was so happy...doing everything he loved and surrounded by people that adore him!  He then enjoyed some more 1:1 time with Mommy & Daddy (sister left for the camper), before taking a bath (working on learning how to wash his own hair and body), having his favorite bedtime snack of popcorn, and then went to bed about 7:45pm.  I'm sure he fell asleep dreaming about his new trains, cake, and soccer!

July Update on Brycen

First of all, Brycen will be turning 5 in ONE WEEK!  That just seems impossible...though so much has happened in 5 years.  While his physical age is moving forward, his developmental age is still lagging far behind.  He's a 1.5-2 yr old in a 5 yr old's body for the most part.

Therapy:  Brycen attends speech and OT three times per week for one hour and 20 minutes.  He LOVES going to therapy!  When I say it's time to go, he rarely fusses and will frequently say "peee" in imitation of "therapy."  He is always so happy when he comes out of his appt too and he's making fabulous progress.  He's already met some of the goals they set for him at the new clinic just in this first month!  He's a very determined little boy when he wants to be and surprises us frequently with new things he can do that we weren't quite expecting yet.  One of his speech goals is to work on 15 core words.  Two of those words are "mom" and "dad."  He has not said either of these in about 3 years.  He will do some imitation noises when we ask him sometimes, but it's not consistent sounds and never spontaneous.  The SLP seems very determined to help him with this as she feels these are important words in any child's vocab.  Since Brycen has begun imitating more sounds in the last few months since receiving his device, we decided to program our pictures into the device so that he is hearing "mom" and "dad" from that instead of us always prompting him.  Crossing our fingers that we will reach a breakthrough soon with this!
School:  Brycen has been meeting with a teacher every Tues and Thursday for an hour for his extended school year hours for the next couple weeks.  He has adjusted well to the new school surroundings and LOVES his teacher.  When I say it's time to go see "Carrie", he is imitating "Cay" and runs to the door.  We are actually looking into Carrie working with him during SCL home services as she is also employed with a local agency.  She will not be his spec ed teacher in the fall, but was able to do his summer hours!
Learning:  We continue to be amazed at how fast Brycen is learning some things!  As I posted before, he just started tracing the letters of his name (and other letters as well), and even did it without tracing with just verbal prompts from me!  He is now able to recognize not just capital letters, but lower case as well.  He can also recognize most of the basic colors and is attempting to verbalize them as well.  He LOVES his device and can navigate it better than all of us!  We recently programmed "yes" and "no" into the device and it's funny how he likes to go to that page and push "no" and just look at us with a silly grin.  Just another thing to show his developmental age of about 1.5 when a child is first learning to say "no" and it's about all they will say!  Brycen can imitate a lot of sounds and has word approximations for a lot...but we continue to battle the fact he needs to be prompted for most of them.  While I have just learned to know what he wants or understand his sounds, it's very hard for anyone outside of our house or his therapists to understand him.  Even Aubree can understand some of his sounds better than another adult can!  We just keep hoping he will make progress in this area as we know how vital communication is in this world and for him to be able to thrive and be more independent.
Sleep: Well, this is going as well as the other things.  Since we moved, he has only slept through the night (8 hours or more) three times...and two of those times was 8 hrs exactly.  He typically goes to bed around 8pm with a "cocktail" of juice, benadryl, and melatonin which helps him fall asleep fast.  He will then wake up anywhere between 1 and 4am for around 2 or so hours.  It's not that he's being naughty during this time, he just is wide awake and is wanting to stim a lot.  Due to safety concerns, we can't leave him alone so one of us is forced to be awake with him.  The part that is also frustrating is that when he wakes up, he runs full speed into my bed, opens the door loudly, therefore waking his sister often.  If she wakes up, then I am forced to wake up Daddy also to help out with her which is not exactly fair to him with working 50 hours a week lately. 
Eating:  We prided ourselves in having a child that would try and eat many things...but we've recently hit a brick wall in this area.  In the last few weeks, Brycen has become quite picky compared to before, though not as picky as some other children of moms that I communicate with on FB.  Luckily, he still likes grapes, bananas, and baby carrots so we can still get some healthy food in him.  He won't even eat his prized PB sandwiches anymore, or cheddar cheese chunks...but if you put chips or cheetos on his plate, they are gone instantly.  We continue to put things on his plate and include at least one thing we know he will like, and when he comes to the table, if he doesn't like how his plate looks, he will push it away or even throw it.  He has gone quite a few times with choosing to not eat anything for supper.  Just this week, we were excited to watch him eat a hot dog and some grilled chicken breast!  As well as a slice of pizza and breadstick at Pizza Hut yesterday!
Behavioral:  Brycen continues to be very aggressive daily.  He is also continuing to stim a lot, including flapping, pacing, jumping up and down, and lining things up.  I try to remember that most of his aggression is probably from not being able to communicate effectively, but it's hard not to react when you see him tackle his little sister and put his hands around her neck or pull her hair.  We do allow them to be in a room together briefly as long as we can hear them and check on them a lot.  Aubree is pretty good at screaming loudly when he has tackled her so we can respond fast!  But Aubree is not so innocent either, as she will sometimes instigate the aggression by touching one of Brycen's trains or something else.  Brycen has also been attempting more running from me lately....such as when we are leaving therapy or at the grocery store.  It is getting to be far too difficult to take him to these types of things and much easier to use the stroller for walks where I can buckle him in and know he can't slip out to run from me. 
Personal Hygiene:  Brycen continues to be infatuated with his male anatomy.  Though he is not "flashing" himself as often in public but that is probably more because I rarely take him places and do most of my errands when he is in therapy.  He is working hard at washing his own body in the bathtub and he seems to have adapted well to taking a bath separately from his sister.  He is even putting his head partially under the water spout when the tub is filling up!  He continues to wear a pull-up during the day and an overnight diaper at night.  Though he does seem to understand that he needs his diaper changed after a BM as he will either lay down on the floor or grab his bottom, he doesn't seem to give any signs before hand.  We continue to encourage him to sit on the potty just to sit and get comfortable, but he is not even close to understanding the process of potty training. 

Hopefully this gives you a little insight into where he is today!  The summer is more than half over and I hope it doesn't sound horrible that I am so looking forward to him being back in school full days again!  He needs that structure and routine, and I just need time to get things done and not have to be following behind him everywhere in the house to ensure he is safe.