Christmas with the Cousins

I'm shaking my head as I looked at my blog and saw the last post was in July.  Shame on me! Bryce starts his first year in a mainstream class and I haven't recorded a moment of it! Suffice it to say, it's been a rousing success and he's doing great being surrounded by typical peers and lovingly guided by Mrs. Linda.

This year it was our turn for a Burkholder Christmas, versus the Rench one.  However, since Christmas fell on a Sunday (essentially a work day for us) we were in town Christmas day.  We spent Christmas Eve here at our house with the family and Christmas Day over at Grandma and Grandpa's (after a wonderful Christmas service at church).  The next day, we headed up north to Gramps and Mem's house.

At this point, Bryce had already been out of school for a week, and I could see the subtle changes in him already.  He NEEDS structure and familiarity to perform well.  When he's out of school and away from Mrs. Linda, he's like a different boy.  Not bad, but there are more "issues", more frustrations, etc.  I was a little concerned about how things were going to be when we got around all the family and chaos that goes along with a Christmas vacation.

Bryce was excited as we left town, new pillow pet in tow, because he knew we were staying in a hotel (which he pronounces HO-tel). When we got to Gramps and Mem's house the next day, I was pleasantly surprised to see Bryce greet them by name and give them big hugs.  We also got to spend the holidays with Uncle Lance, Aunt Josie and their three boys, Liam, Kyle and Regan.  Bryce kept calling Lance Uncle Justin, because his family was usually there when we came up for Christmas.  But by the end of the week, he had everyone's names figured out. :) I also noticed that when we greeted the family, Bryce did an excellent job of answering questions posed to him.  Sometimes you get nothing but silence from him as he either thinks a long time about how to respond or totally zones you out and ignores you.  But he did very well answering questions about his age, what he got for Christmas, etc.  No one else may have noticed it, but I smiled to myself as I watched his initial interactions with the family.

This is not to say there were no issues or meltdowns all week.  One of our biggest mistakes was forgetting to bring our Wii controllers and his favorite game, Wii Sports Resort.  There was a Wii to play, but not his favorite game, and about 5 minutes after realizing that, he started asking if we could go home.  I hate to see him unhappy like that because it just consumes his mind-he was on the verge of tears the whole first night there.  Our saving grace was the fact that they did have Mario Cart and three controllers, so the cousins were able to play together.  It took some referee work to keep everyone happy, but we managed :) Our other major issue was the sock incident.  Bryce NEVER takes his socks off.  Bath time and swimming will be the only time you see his feet.  But one day, he went to the restroom and stepped in a puddle (you know, the kind of puddle you get with 6 little boys using the same restroom).  I didn't have any extras with us because we were staying at Amie's house overnights and our luggage was over there.  Her house was only minutes away, but we had to take him over there immediately to get more socks.  The whole trip he kept saying, "I need my socks!!!" We would tell him we were going to get them, and then ten seconds later- "I need my socks!!!"  *Sigh* I'm not sure we'll ever get him over that particular obsession.  Once they were on again, he returned to  his usual happy self!

The most noteworthy event of the week, at least in my mind, was unnoticed by everyone else.  I told Bryce to turn off the Wii and go play with some toys with his cousins.  He disappeared down the hall to the boys' room  and I figured he was going to stay back there alone with the toys.  I was shocked to see him return will a toy for each one of the boys and one for himself.  He walked around the room handing out a toy to each cousin saying, "Here, you play with______." I was so proud of him.  He thought of others individually, and carried out my instructions even better than I hoped he would.  If Henry had done the same thing, I wouldn't have thought twice about it, but when you are dealing with an autistic child, those events make your heart sing!

We really did have a very Merry Christmas- now BACK TO SCHOOL!!! :)

Out of the Mouths of Babes...

During Summer School hours (which Bryce did not qualify for since he is so advanced in academics :), Bryce has been still going to the school to work with Mrs. Linda, the world's greatest ABA therapist.  He gets 5 hours a week according to his IEP, so we spread it out over a few days and it gives him something to do over the summer break.  It also is helping prepare him for the new school year, where he will be attending a regular ed 1st grade class this year.  Mrs. Linda will be with him all day to help keep him on task.  For the summer, Mrs. Linda has been concentrating on social skills and communication instead of more academics.  Yesterday, when I picked him up from school, she told me he had just been chattering away all day and was doing fantastic work on his sentences.  She sees such an improvement in him since the beginning of Kindergarten.  He's finally starting to grasp some of those abstract concepts that are required to build proper sentences.  On Thursday, when we were at her house swimming (yes, she invited us over to swim and to work with Bryce in the pool-is she not just the biggest blessing ever?!?!?) she told me that he should be caught up to his typical peers in language by 3rd grade.  That is just about the greatest news I've ever had.  There's hope.  Light at the end of the tunnel.  He'll always struggle socially and communication will be hard for him, but if he can make himself understood without someone always there to help...that's a huge burden off my shoulders! Anyway, last night, Linda called me because she forgot to tell me something when I picked up Bryce and she knew I would really want to hear this.  She said that she was picking up random flashcards and asking Bryce to give her a sentence using the word shown.  She held up one that said, "made."  Without hesitation, he said, "I am fearfully and wonderfully made."  She couldn't believe it! She asked Mrs. Caskey, Bryce's kinder teacher, if she had heard what Bryce said.  Mrs. Caskey said no, so she asked Bryce to tell her the sentence again.  And again he said, "I am fearfully and wonderfully made."  Mrs. Caskey didn't see the significance of that, so Linda said, "He's quoting Scripture!!!" We are so blessed to have a wonderful Christian lady working with Bryce in the public school system!  She's even offered to use her phone to show him visuals of verses he's working on (sneaky way of getting the Bible into school without breaking any rules).      I always said I would never put my children in public school, and sometimes I feel guilty for putting my son in an environment that may be difficult for him, but little things like this confirm that we made the right decision and are doing what's necessary to get Bryce the help and education he needs.  And God is keeping him protected and provided for while he's there.  What's next?  I don't know.  We will just take things one day, one month, one year at a time, and trust God to show us where we need to be! Because, we too, are "fearfully and wonderfully made" by an amazing God!

"My Tooth Fell Out" by Bryce Burkholder

These are the events of last Sunday/Monday according to Bryce: (his therapist had him write a story)

"I was at church and ran and bump Henry.  Then it wigold.  Next my tooth came out.  I put it my envelop undr my peloaw.  I got muney frum 99cents for a new game."  He then drew a picture of a huge mouth with a missing tooth and an arrow pointing to the hole that says, "My tooth is gon."

It may have been the fact that he knew he could get a new game for the iPod when he lost his next tooth, but this time around was MUCH less dramatic than the last time :) Yay for progress!

A Heart-warming "Motherhood" Moment

Anyone with an autistic child will tell you that there's rarely such a thing as spontaneous gestures of affection.  Bryce has never brought me a flower from the yard, or come up to me and said, "Mommy, I love you."  I don't get kisses "just because." I may never get a Mother's Day card that was not purchased by Daddy or created at school.  This is not to say he isn't affectionate at all.  But his affections are usually in response to ours.  It's a learned response.  Just like, "Hi, how are you?"  "I'm fine, thank you." Or "What do you say?"  "Excuse me."  So the other night, I was saying goodnight to him like I always do.  He was in bed already and the lights were off.  I kissed him on the forehead and said, "Goodnight, I love you."  He responded, "Goodnight, I love you."  But then he did something totally unexpected.  As I turned to leave the room, he grabbed my wrist and said, "One hundred kisses."  I was surprised and it took me a minute to respond.  I realized he was asking for 100 kisses instead of a kiss goodnight.  I countered with, "How about five kisses?"  He then negotiated, "How about TEN kisses?"  How could I say no to that? So I kissed him all over his face while counting to ten and then he just giggled  then turned over to go to sleep! I came out to the living room and told Jared I'd just had one of those heart-warming mommy moments that so many others take for granted.  My sweet boy- how I love him!

Mainstream my baby?!?

Ok, so I know he's not a baby anymore- he's a VERY large 6 year old, but this was my thought the other day when Bryce's teacher mentioned how well he was doing in class and she thinks he should go mainstream with a full-time aide.  It's a two-edged sword, really.  Every parent of a special needs child wants their child to be as "normal" as possible, but on the other hand wants to protect their child from those same "normal" kids!  Bryce has been improving by leaps and bounds since going back to school after the Christmas break.  He's always been bright academically and this baby Kindergarten stuff really isn't all that challenging for him.  He, of course, has gaps in his abilities, so he still has to maintain the course he's on, but his teacher has started him in First grade math and reading/writing comprehension.  He also does all First grade spelling! So, to give him more of an appropriate and challenging school atmosphere, she believes he should go mainstream next year for First grade.  (Which by then will be baby-easy for him, but we'll cross that bridge when we get to it.)

Now, it's not that I don't trust Bryce's teacher, but I value the opinion of this ABA therapist much more.  She is the one who spends 2 hours every day with him one-on-one and she really knows him by now.  She has figured out his personality and learning style, and whether he needs time to answer a question or has just wandered "off task."  So I asked her after school whether she thought mainstreaming him was a good idea. She just jumped at the idea and STRONGLY recommended it for him.  I was surprised by how adamant she was about the idea.  She would be his full-time classroom aide, to keep him involved, on task, and help him when he doesn't understand.  Autistic kids don't naturally follow the example of their peers, and need to be taught how to take cues from others.  In his special ed class, he doesn't get the peer examples, since all the kids in there are learning disabled in one way or another. Bryce's therapist thinks that only good will come from mainstreaming him, so it looks like we'll be having another IEP meeting at the end of the school year to get that all set up.  Now I just have to fight to keep him at his current school.  His therapist would go with him to any school he attends in the district, but I like his school and I want to keep things as familiar as possible for him. 

As to what this means for the future, especially as he ages in middle school and high school, I'm not sure.  We just have to take things one day at a time and make the best decision we can for him at each crossroad. 

The First Five Years- Here and Gone...

I can't believe my baby boy is no longer my baby boy!  He isn't even a toddler or preschooler.  There's something about getting past that 5 year mark that seems so grown up.  Six years! Where did the time go?!?  Bryce celebrated his sixth birthday with the family on December 2.  This is really the first year that he's understood about birthdays and Christmas.  He knows his birthday now if you ask him, and he's very good about telling you how old he is.  Although he still says 5 and then corrects himself to say 6.  Old habits die hard :) 

Every day he works with his therapist to decide what to tell me about his day when I pick him up from school.  She started with a script, then started giving him a choice between scripts, and now has moved on to just giving him visuals of the day and he chooses what to tell me.  Most of the sentences are in his own words, and he's doing great about stringing the words together properly.  On his birthday he told me, "Today, I got to play on the computer, because IT'S MY BIRTHDAY!" It's so great to see him understand what he's saying and desire to communicate with us! His ABA therapist is just so amazing- a huge blessing!  She truly likes him and loves to work with him.  She has even offered to barter ABA for piano lessons over the summer!

The experts say that the first five years of a child's life are critical learning years.  That is the case with a typical child, but especially with any kind of disability.  I used to be so worried that we lost so much critical time by having his diagnosis delayed for so long.  He was three before he started getting really consistent help and training.  But after seeing the amazing progress he's made in just one semester of kindergarten, I'm not worried at all.  I know this is still a critical time, and we're going to cram everything in that we can, but it's not the end at all- it feels like just the beginning!

Making Progress

I recently had Bryce's IEP meeting at his school.  For those of you not involved in the special education world, IEP stands for Individualized Educational Plan and is just a series of goals to be worked toward for your child specifically.  This meeting is very important as it determines what services Bryce will receive for the year.  I was happy to hear that he is very polite and well-mannered in class and loves to work hard.  He is testing at or above grade level in math and reading.  This is according to standard testing they do in class.  Yes, he has to have standard testing, even though he's in special education.  Can you believe it?  No wonder test scores get dragged down overall.  Anyway, he was given the tests with a "help" from the teacher.  She had to help him understand what they were asking for.  When she did, he was able to perform all the tasks given.  He just doesn't understand the initial directions unless shown an example.  So, long story short, he's doing well in rote academic areas (reads like you wouldn't believe and is doing 1st grade math) but he's way behind in the comprehension areas.  He is unable to answer "wh" questions about any given topic.  This is one of his goals, however, and we are seeing some progress in this area.  The abstract concepts are just not there for him.  But, he has a GREAT therapist that works with him every day after school, and boy does she make him work!  He's exhausted when he gets home, but it's helped so much with keeping his brain active and on task.  I see far less "stimming" (that's repetitive actions that help to calm him or block out the world around the world-he mostly engages in verbal stimming) and get more eye contact out of him than ever before.  As an example, on Sunday, Bryce was down the hall in church by himself and Jamie came in the door.  Unprompted, he said, "Hi, Aunt Jamie."  Jamie said hello and asked, How are you?  Bryce replied, "I'm fine, thank you."  All unprompted.  All scripted, but he is learning to take the scripts he's taught and generalize them in the proper settings.  Not a big deal to your typical kid's parent, but a blessing to me! :)