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. 

Setting and Achieving Goals

Everybody sets goals for themselves and their lives, right?!  It helps us learn, grow, develop, and succeed in life.  Setting goals in Brycen's life are very different than setting goals for myself.  Since Autism sets the stage for not knowing when or if he will meet certain developmental milestones, we have to be careful with the goals we set.  We don't want to set the goals too high and then be disappointed with the outcome, nor do we want to set them too low and be underestimating his talents and abilities. 

Brycen's entire life consists of teams...team of therapists, educational team, home services team, team of U of I doctors, etc.  Every time I sit down and think about how many members are a part of Brycen's entire "team", it's overwhelming.  Every year the "team" gets bigger and there are more people to meet with, more paperwork to fill out/sign/file, more appointments to make, and more data to collect.  In our situation, the team also keeps changing every time we move which can definitely be overwhelming.  On the other hand, we get more opinions, different suggestions, and various opportunities to help Brycen succeed in life which I see as very beneficial. 

I want to stop there and explain what I mean by "succeed" for Brycen.  When I use this word, I am meaning I want him to live life to the fullest of his abilities; I want him to be healthy; I want him to learn; I want him to be able to live in this world without being judged; I want him to do things he enjoys; I want him to love and be loved; I want him to contribute to the world in some way; I want him to be able to care for himself in some ways, but in others to always know we will be with him to help.

When Brycen began regressing and was ultimately diagnosed, I threw out the "What To Expect..." books because it was just too much to see how far he was behind each month.  I actually chose to rarely look at these books even for Aubree because I didn't want to base our life on comparing her development to his lack of development.  Every time that Brycen meets some developmental milestone now, I find myself wondering where this falls on the charts.  I will research the milestone to see how far behind he is not to be upset with the results, but to see how far he has come in the last 2 1/2 years since regression.  When he was turning 3 years old, he was showing communication skills of a 14-16 month old.  We know that is higher now, though I do not have a new estimate since he began using the communication device and began verbalizing more sounds recently.  The way I look at these findings now and see the charts is completely different than 2 years ago, and shows that we are moving further along with accepting the challenges that Autism has presented us with. 

We recently shared in the last several months how Brycen began recognizing his ABC's and was attempting to verbalize them as well.  We shared how since Brycen received his Alt-Chat device, he is attempting to imitate far more sounds and words especially the names of colors.  Just last week, we shared how he is tracing letters, specifically we are working on the letters in his first name.  It has only been a little more than a week since we began focusing on this area, including his OT and his teacher in this new skill.  Just this week, I shared the goal I had set for Brycen pertaining to writing his name independently and that I would like him to be able to do this before January 1.  Originally I was thinking before school even started in August, but again I did not want to feel any disappointment if August came and went, and Brycen was not even close to doing this.  Writing your name is a skill that is so necessary in life...whether it is putting your name on homework or tests, or signing a check at the store...this is a skill that so many of us take for granted!  I want Brycen to succeed in this area, so I didn't want any feelings of disappointment to get in the way of that success if I set the goal too soon.  So that is why I decided for January 1.

In ONE WEEK, Brycen is already almost meeting that goal I set for him!  There are some things that he needs to work on for months or even a year before he has come close to conquering them...and then there are some things that come easily to him once they are being worked on.  Below you can see where he wrote his name...with verbal prompts from me.  I told him to write "B" without even touching the paper or making any gestures...and he did...then I told him to write "R"...and he did...and so on.  My heart was racing as he was doing this!  No tracing involved, no examples on a paper nearby....only my verbal assistance with what letter was next!  My baby boy that doesn't even turn 5 until the end of this month is almost able to write his name legibly and independently!  I never would have guessed two years ago that he would be able to do this before kindergarten!  I guess we really underestimated him in this area.  He continues to not grasp the utensil as needed so of course that has been a goal with OT for awhile now, but honestly that is not a concern for me as I see him working so hard to conquer this milestone. 

FYI: After researching this online through multiple websites, it looks like my baby boy is actually catching up to his peers in this area, and possibly even ahead of some of them!!!  This special moment reminds me it takes a team of people to help Brycen set and achieve these goals.  I want to make sure to give credit to all of those people that have worked hard over the last year in this area...his old school while working on "Handwriting Without Tears", his OT and Speech therapists from the last year at both clinics, his new teacher this summer who he looks forward to seeing each time.  Each of these people made this possible...and will continue to help Brycen succeed in life as we continue to set new and challenging goals for him in the coming years!