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!

Another "LEAP" for mi"STER" Brycen!

After a long lapse in playing the Leapster with Brycen, we recently rekindled the love Brycen has for the Clifford the Big Red Dog game. It has been many moons ago since I have blogged about the Leapster (or blogging at all as Melissa usually does it) so I will refresh everyone on where Brycen was.
The main focus of this post will be on the game that involves tracing letters (there are other games that involve some other skills which Brycen is getting quite good at as well). Brycen's first major obstacle was to even hold on to the pen. Brycen at first was comfortable with having me hold the pen and he would put his hand on top of mine while I traced the letters. Then he progressed to the point where he would hold the pen and attempt (just one attempt) to trace but couldn't do it correctly, so then I would do hand over hand with him.

Brycen tracing letters on the Leapster!

Recently when we started playing the game again Brycen was extremely excited about the letters, trying to say each one, and he would try to trace them a couple times before he would want me to help him. Each day that we played he would try a few more times before he would ask for help, and each time he was getting a little closer to actually tracing the letters correctly.
My new favorite letter in the alphabet is the capital "Y", it took probably 10 tries but he did it!!! The joy in his face (not to mention my own) was simply priceless. Brycen then did the lower case "y", both sizes of "h", "w", and "f" and each time we would have a little celebration of accomplishment.
The fact that we now know that he can recognize letters, attempt a sound of each letter, and maybe this simple game can lead to Brycen tracing letters.  WOW!!!!
-----Mike

The pages Brycen traced of the letters in his name.

Fast forward a day after he first did this accomplishment:  I broke out a new book I bought at the dollar store recently that has pages dedicated to each letter and tracing.  I copied the pages of letters in his name and sat down with him during rest-time to try this out.  The only one he needed hand over hand assistance with to start was the "R".  The rest of the letters and the last two on the "R" page, he was able to do on his own with just a few verbal prompts and pointing to where to start from me.  How amazing is that?!  I really credit the teacher/associates from last year and the Handwriting Without Tears program for this accomplishment.  Over the last 9 months, he was able to learn to recognize each of the letters in the alphabet (he can now do lower case too!), verbalize all of the letters (in his own way!), and now is showing he can trace quite a few of them!  The excitement he has to do this and how proud he is of himself when he knows he has accomplished something is what pushes us forward each day to conquer the next battle.  I distinctly remember telling the team members at his IEP in April that one of my goals is to get him to learn how to write his name.  I know this is a skill that is absolutely needed in life, whether it is putting his name on his homework, or signing a check someday at the store.  Two years ago, I never would have thought he would have come this far in these areas...so it definitely makes me look forward to where he will be 2 years from now!

------Melissa

Two Years

I bake when I am stressed.  I know our lives have been stressful the last few weeks with all the changes so I understand why I wanted to bake yesterday, but why did I feel this urge to continue baking today?!  I had already completed a triple batch of homemade blueberry muffins and am finishing up a triple batch of peanut butter cookies when it finally hit me.  Today is the 2 year "anniversary" of Brycen's initial diagnosis. 

TWO YEARS?!  Has it really been that long since I took Brycen to CHSC to meet with them about my suspicions?  Has it really been two years since I heard "Autism Spectrum Disorder" in the same sentence as my son's name?  That day will always be etched in my memory.  I took Brycen out to dinner afterwards for a "date" at Fazolis after calling Mike to report the outcome.  I drove the 1hr 15 minute drive home with Brycen, occasionally crying after calling my parents.  I remember questioning if I was strong enough to do this and of course the obvious "why?"  The dream that we had for our child to grow up, play sports, go to college, get married, have a family of his own (all if he wanted to of course) was shattered. 

Now, I still question "why" every once in awhile but not nearly as much.  I still cry every once in awhile, but not nearly as much.  I still wonder if I am strong enough to do this, but not nearly as much.  You see, Mike and I are the type of parents that aren't going to give up.  Autism is a word that helps Brycen get services to help him with his deficit in many areas.  That does not mean he is any less of my son than the day he was born.  He was a planned pregnancy, one that we looked forward to, and for some reason we were chosen to be his parents and to help him fight this.  We do what we need to so he is happy, as healthy as can be, and succeeding in this world in his own way. 

It took us awhile after this day to realize that we have a different dream for our son now.  Just because it's different, does not mean it's any less of a dream.  "Success" is different for everyone.  Some consider graduating from college a success...or making 6 figure salary a success...or having 4 healthy children.  Brycen's success will more than likely not be these things, but his success will be based on hard work that both I and many of those who have the ability to read this blog will never understand or experience.  His success in this world will teach all of us that having Autism does not make him any less of a person, but will instead teach us not to take things for granted and to cherish the "little" things in life that make us happy!  I consider my life a "success" already because of the fact that I was chosen to be his mother and to go through this journey with him every step of the way.

FYI:  I am not sure how else to describe it besides "anniversary" but typically this word is used in celebration of something. Despite how far we have come in the last two years, I will never CELEBRATE Autism.  I recognize it...I encourage awareness through our annual walk...but I will never CELEBRATE the fact that Autism took away so many things from my son.

Mission Accomplished: New house & new town!

The kids' bedroom upstairs

We are settling into our new house and new town this week!  Brycen has done fabulous so far with adjusting to spending a couple days with Grandma before being introduced to his new home.  When he walked into the house on Wednesday, he walked from room to room...checked over his movies in the living room, noticed his toys in the front porch, and then went upstairs to find his bedroom.  He made himself at home right away with wrestling his pillows around:) 

The reading/puzzle area at the top of the stairs

Though the new house is smaller than our old house, it still has some unique areas that allow the kids to be spread out.  They will be sharing a huge bedroom, though each has their own space and side of the room, as well as they have a toy room/porch and a reading/puzzle room at the top of the stairs.  They both have adjusted amazingly well...proving that by falling asleep on their own the first night with no problems in their new room!  The trick to these moves is to move fast and get organized even faster so that when they (especially Brycen) is brought into the new house, they see their belongings already set up and we can immediately go back to our regular routine. 

One side of the large porch area that is now the play room!

We're excited for the opportunities in this new town!  Excited to increase Brycen's therapy schedule next week to three times per week (Mon, Wed, & Thurs) for up to 1 hr 20 min each time (split between speech and OT).  His extended school year schedule is quite different here and he will start meeting with a special education teacher next week.  The schedule will be on Tues and Thurs until beginning of August to introduce him to the new school, surroundings, and include some socialization time with other children there for part of his time. 

Mike's hours have increased at the store along with more responsibilities which is a good challenge for all of us.  The kids and I look forward to walking the 1.5 miles to the store to see him each week, as well as walking to Brycen's therapy which is now only 1.25 miles away (yay for saving tons of gas money!).  We are looking forward to spending time with some old friends that live here, as well as some of Mike's extended family that lives in the surrounding towns.  Aubree is possibly going to attend preschool in the mornings starting in August as well (if I get moving on signing her up!).

This was a great change for us and we look forward to the new challenges it will bring, as well as enjoying our time together again after several weeks apart.  We are going to be very happy here!