Beginning of Summer Update

I am so sorry it's been over 2 weeks since I've updated!  I have a feeling the summer is getting away from us already.

Just some brief updates on Brycen now that summer is in full swing:

• He started his summer school hours last week where he is meeting with an associate at the local Y to prevent any regression in routine and socialization.  The first week was great for him!  He seems like a little chic magnet...saw a couple of the "older" girls sitting around him after I dropped him off on Thursday.  They are meeting 3 times per week for a couple hours each time.
• He also started working with a new SCL staff, Alicia, last week.  Yay for finding someone local that is able to work consistently with him this summer (and hopefully during school year if her schedule allows).  He showed her his attitude right away about having to wait...but have no doubt they are going to have some fun this summer!!  He is already getting very excited when she shows up :)  They will be working together 2-3 times per week all summer.
• He continues with speech therapy three times per week.  He has been working with a new speech therapist that was recently hired full-time at our local clinic.  He is still feeling her out but I can tell he enjoys her as he will run right back there.  We enjoy getting feedback from new therapists to see if there is anything we are missing and they always have new ideas that we haven't thought of!  We do miss Bridget though...but we have plans to continue seeing her and her family on the side :)
• Sleep is the same old...up most nights around 3ish. 
• Aggression is the same...though I'm becoming less and less tolerant of this lately.  He's almost 6 yrs old and getting bigger which means he can do a lot more damage to everybody he is aggressive to.  It HURTS!  Time to get tougher here.
• He's doing amazing with eating!!!  He's finally gaining some weight and filling out a little though still a skinny thing.  He's consistently trying some new things though may not take more than a bite...and he devoured 1/2 ear of sweet corn last week so that will definitely be on the weekly menu this summer!
• Potty training is frustrating!  Since we started in early April, he has been great with peeing...up until this last week when he started peeing in his pull-up again A LOT!  Now you are probably wondering why is he in a pull-up instead of underwear after all the success we had a couple months ago...well, the kid regressed completely in pooping.  Since school ended, he has only had a handful of successes on the toilet with that.  I thought it was just a little stage with change in schedule, but looks like it's more than that especially since he started peeing in it as well.  Sooooo, it's back to the basics again!  I refuse to let this regression take him back that far...we worked HARD in April on this success.  Regression is always in the back of my mind with EVERYTHING he accomplishes developmentally, and being he is so close to the age the U of I doctors initially mentioned, it is definitely crunch time!

Thanks for staying updated on Brycen and our family!  As you all know, we participated in the Iowa Walk Now for Autism Speaks in Des Moines on June 9...and I have tons I want to share with you about that soon!  It definitely calls for a post of it's own, or maybe even two or three!

IEP = Big Plans for Brycen

We gathered with Brycen's educational team a few weeks ago for his annual IEP and walked away with a brand new plan for our little buddy.  I didn't update immediately because we still had a few things to work out in the plan before it was finalized and wanted to be able to post about all of it at one time.  These are the main points that will interest most of those familiar with Brycen and his services.

1.  Brycen is progressing far faster than we could ever imagine.  This meeting reiterated how he is thriving being in the general ed classroom for part of the day with a 1:1 associate.  One line that stands out from his written IEP is "Brycen is learning some of the general education content at an age-expected pace.  Once he learns something, he is holding onto it."  So this is great news, right?!  Of course.  The next line is "His inability to attend to task and follow teacher direction will impact his ability to show what he knows.  An adult to help with keeping him on-task, restating directions, and to interpret his communication attempts will be necessary for Bryen to experience success in general education content."  So it's not what he is learning in gen ed that is a problem for him, but how he is learning it and how much help he needs to pay attention to learn it. 

2.  His communication continues to be a big area of concern.  We all know communication is a huge factor with all children on the spectrum...whether than can verbalize or not.  In Brycen's case, he is unable to verbalize but we know it's in there...just need to give him the tools like his "talker" and the I-Pad at school so he can communicate with us more and show what he knows.  Brycen will continue to receive speech therapy at school 40 minutes per week in addition to his time with the special education teacher and associates (who of course are constantly reiterating communication with him).

3.  He has come a LONG way with his writing skills.  While he needs complete assistance to come up with topics to "journal" about and typically needs prompts to answer questions using his "talker," he has the ability to write out every letter of the alphabet capital and lower case...with some modeling need for a few of the letters to get them correct.  He is struggling with writing within certain lines, spaces, etc...so he will continue with Occupational Therapy at school 120 minutes per month to finetune these skills using some special paper and tools. 

4.  Since his progression in the educational aspect is holding steady and showing no signs of regression over breaks, he does not qualify for the typical extended school year program.  BUT, the entire team agrees that he is most definitely at risk for regressing in the areas of routine and socialization with peers.  The team has worked out a plan to have him participate with a 1:1 associate this summer for 7 weeks, up to 6 hours per week, at the local YMCA program where he can regularly practice his socializing and have a routine that is similar to that of the school environment.  We are very lucky in that one of his regular associates is willing and able to do this so we know he will be in good hands and he will understand the transition better with her help.

5.  Brycen will participate in all grade-school testing like the other 1st graders (oh my goodness, my son is going to be in 1ST GRADE!!) with some exceptions to having no time limit and having an adult be able to assist him with filling in the answers after he comes up with them, etc.  Of course there are some things they are unable to do due to educational laws like read certain questions to him in the reading area of testing, but they will accomodate him as much as possible to align with his special needs.

6.  Lastly, this is what we might consider the biggest change of all for him.  It was agreed by the team that he is doing so well during a few areas of the day with participating and following directions that there will be times throughout the day where he will NOT need a 1:1 associate assigned to him.  These times will include PE, music class, and recess time...as well as some time here and there in the general ed classroom that doesn't involve specific learning times.  The day after the IEP in April, the team immediately implemented this part of the plan with phasing out the associate during these times.  Doing this the last few weeks of school will give the team time to determine if it will work out ok and spot any kinks in the plan.  To us, this is a huge step towards his independence!!  It shows just how much he has progressed in a setting with his peers and it also shows just how hard the associates/teachers have worked to get him to this point in these areas after just 9 months of school.  So far it seems to be going well...as these are 3 of the school setting he very much enjoys! 

So as you can see, there have been some major changes in his plan that mostly stem from how much progress he has shown over the last 9 months.  He enjoys school, enjoys his peers in kindergarten, as well as enjoys his friends in his special education room as well.  It seems like all of his teachers and associates also enjoy working with him.  Though we know he can be naughty just like any other 5/6 year old boy, he has so much determination to learn and have fun!  We are so proud of his achievements this year and are in awe of just how far he has come in the last 3 years since his initial diagnosis.  Thank you to all of those team members who have had a part in his life and pushed him to be the best he can be!  He doesn't like to be pushed outside of his comfort zone at first, but as we can see it is paying off in so many ways.

The Reality of Having a Nonverbal Child

Brycen and his kindergarten friends went on a field trip today to a local nature center.  I love how much this school gets the kids out into the community whether it's attending the Homecoming Parade, to the local theater to watch a play, and a big trip to the zoo last Fall.  Mike actually had the chance to go on the zoo trip and had tons of fun!

When Brycen came home on the bus today, I attempted to ask him questions about the trip to the nature center.  I started with yes and no questions but he was too distracted to answer anything.  I showed him his lunchbox and asked him if they ate outside on a picnic but he ignored the question.  I asked if he went on a walk with his associate and kindergarten friends, and this caught his attention but he just stared at me.  I then asked him if he rode the bus to the center and he finally said "ss" which means "yes."  At this time, he had enough of the questions and just wanted to watch a train video like he does on the days he doesn't have therapy after school...he grabbed the video and thrust it into my hands, yelling and pointing at the TV.  Of course I knew what he wanted because it's the same thing every time he wants to watch a video so I did as he "requested" after I prompted him to sign/say "please."

I then left the room (of course not very far as I rarely leave the kids in one room together without supervision due to Brycen's aggressive behavior) and my chest felt heavy & my eyes filled with tears.  I don't want the kids to see me cry.  I don't want myself to cry...but it's inevitable because it's one of those days when reality has hit me.  It's slapped me across the face causing a sting that will continue for a long time...reality that the sting I first felt when Brycen lost his language 3 1/2 years ago is still a dull ache, and each of these moments just keep adding to that original pain.  It doesn't matter how much I accept "Autism" or how much I know about it or the possibility that someday he will talk again...it still hurts and nobody can tell me to feel differently. 

He's almost 6 yrs old.  Completed two years of special education preschool and almost one year of kindergarten.  Been in consistent speech therapy outside of school for two years.  Received an amazing communication device a year ago.  Had genetics testing (nothing in results).  Sees a psychiatrist who prescribes a daily medicine for him to decrease his anxiety and stimming in hopes of seeing results in his development such as speech. 

Nothing has brought his speech back.  Nobody can even tell me what to expect with his speech in the future. 

I appreciate all of those people involved in all of the above things and the time they have given us to help him improve in many areas!  AND I know he has improved in other areas of communication such as gesturing, some simple sounds, eye contact, usage of device to mostly answer questions, and recently a few general comments on the device.  But he is still nonverbal.  He still can't tell me about his day like other kindergarteners are telling their parents right now about the field trip and all that they did and saw.  He can't even say "mom" correctly and without prompts (it comes out like "bom" and he ALWAYS has to be prompted by me to say it).

I'm not saying these things for pity.  I don't want you to feel sorry for me...or for him.  It is what it is.  We don't need sympathy.  We need action...we need help...we need understanding...we need support...we need cheerleaders. 

I love my son more than anything in this world and I accept him for who he is.  But if I was granted one wish today it would be to give my son his voice back.  Let me have just a few minutes after these special events so he can tell me what his favorite part of the day was like most other children are able to do.  Maybe I'm selfish as maybe he'd prefer to not have a voice and is happy the way it is...but I think every mom has the right to hear "Mom" once in awhile and every parent has the right to have a conversation with their child at the end of the day.  That's something every parent looks forward to the day they look into their child's eyes for the first time, right?!

Keeping up in Kindergarten

As you all know, Brycen spends a good portion of his day in the kindergarten room with his typical developing peers with the assistance of a 1:1 associate.  When we originally requested this, our intentions were for him to hopefully gain some speech and social skills training from being around his peers...as well as build awareness among the younger generation that having disabilities doesn't always mean you have to be separated from the bunch.  I think Brycen is overall succeeding in all of these areas and from what I have seen and heard, all of the other kids just see Brycen as himself.  I love that!!

What we weren't expecting with Brycen beginning kindergarten is for him to be able to keep up with the majority of the educational aspect of kindergarten.  Kindergarten is so much more advanced these days...they are reading simple books, counting to 100 (and counting by 10's!), and learning far more than I can ever remember knowing about kindergarten.  The teachers and associates keep us up to date very well on Brycen's progress and his worksheets are sent him on a regular basis for me to see what they are doing. 

When I visited the school last week (purpose was to actually fix his "talker"), the special education teacher was working with Brycen on "number sentences" using dominos.  What an awesome tool to use!  Of course, convincing Brycen to start doing his "work" is the hard part...but once he gets started he seems to fly right through it!  Before I left, he had then ventured back over to the kindergarten room with his associate where they were working on math as well.  This time, the kids were given a worksheet to fill in to work on number sentences that equal 6. 

Here is what Brycen's completed work-sheet looks like:

With the help of the associate, Brycen would "roll" his colored beans and then count how many were red, color that many in a box, count how many were blue, color that many in the box and then form a number sentence from that.  I'm sure you can see that Brycen is actually writing his numbers as well...with the help of the associate in some of the boxes, but he clearly wrote the top right number sentence himself of 3 + 3 = 6. 

I never ever expected Brycen to be able to keep up with his peers in these areas!  I know it takes him longer to complete these things and he needs an associate at all times to keep him on task and to show him what to do, but he has come so much further just in the last 6 months than we were thinking he would come in a couple years.  Originally, we were thinking about having him repeat kindergarten but I'm not so sure that is going to be necessary depending on his progress we received from his next IEP in May.  I'm confident he will continue learning (at his own pace, though it doesn't seem to be very far behind) and though he may not be able to talk to us about things, it is obvious that he is taking in more things around him than we ever imagined.

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.

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!

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!

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. 

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!

Moving AGAIN!

As most of you know from my FB page, Mike is being transferred to a new store already.  He was promoted to 2nd Assistant Manager (a new position that the company created about a year ago that only select stores will have depending on how busy and big they are) in a store that is almost 2 hours away from here.  We are so happy to be able to stay on the eastern side of the state though so we are still within 2 hours driving to both sets of parents!  Mike was only at this store for 9 months, and the kids and I had only been here for 7 months before receiving this news.  Just so you know, this short of time between moves is NOT typical of the company...it's usually more like 2-4 years, but when the company feels like they have found the right fit for someone to advance, they will move you when needed.

In addition to finding a new rental house (thank you to some old Fareway friends that are already in the new store that helped with this!) and of course moving our entire family and belongings, we also have the additional tasks of moving all of Brycen's services and therapies to the new town.  Some of you are familiar with what this all includes, but most of you probably aren't so I'll provide a "brief" summary of what my list right now consists of pertaining to Brycen ONLY:

• Brycen's Case Management will be transferred from Clayton County to Jackson County so he will have a new Case Manager to oversea his waiver services (respite, SCL, etc)
• Social Security will need documentation of our new residence and income changes (Mike receives a pay raise with the move as well as he will be scheduled more hours each week than he was as a full-time managment program employee) as that will all change.
• Respite services will hopefully stay the same with my old employer and my mom will stay as the staff if they will allow (they currently do not serve anyone in that area of the state)
• SCL services will still be through the CCO program and my mom as the staff...and I JUST received an email from the broker here in NE Iowa and she said she is able to stay with him also so I can cross this off my list besides having to change our residence and phone number with the broker and Veridian who oversees the payment to my mom for her hours worked.
• Therapy services (speech and OT) need to be located in the area...our current SLP at the hospital is helping with this and we just found a lead on a great place in the town.  Otherwise we will have to drive him at least 30 miles to a therapy clinic that works with pediatrics.  Cross your fingers for the local clinic to work out!
• Pharmacy change with his medications
• U of I genetics will need to be changed since we are under their care right now with testing
• Psychiatrist will either need to be changed or since she is located out of Cedar Rapids (she travels one day per week to our current area), we may just drive to continue to see her so we have one less change
• New physician needs to be found right away to transfer all of his scripts for diapers and therapy to new town
• Medicaid will need to be informed of his residence change.
• Activ Style will need to be informed of his residence change and provided with new script for his diapers
• Transportation company will need to be informed of his residence change and special approval required for reimbursement if we need to take him out of the county for any doctors or therapies
• Most importantly, his educational needs will be transferred to the local district including the new IEP that our current team worked so hard on these last few weeks so he will be in special education services, intergrated into the general education room with a 1:1 paraprofessional all day, as well as speech and OT included in his educational services.

Phew!  Of course I have another list that is just the basic moving things like insurance, utilities, credit cards, bank accounts, etc.  I know I've said this before but after looking at this list typed out, it really does make one think that having a special needs child and managing all of their day-to-day services is a full-time job in itself!  I love being involved in his services though and I am very grateful for the education and work experience I had prior to his regression and diagnosis so I know what needs to be done and how to stay on top of the basics.  It does make some of this a lot easier having 10 years of experience of working in the field...though no education or work really prepares you for the job of 24 hours of special needs, just like babysitting a baby for a few hours does not really prepare you for the 24 hour job of having a newborn baby. 

I'm trying to think positive about this move despite it happening so fast.  Each day I am finding more and more things that will be easier once we move such as the decreased travel time/gas money for Mike to get to work, to get Brycen to school, and hopefully to get him to therapy as well.  We already know one Fareway family in the area, as well as Mike has extended family that live within a half hour of the new town (thanks to his aunt/uncle that are letting him stay at their house over these few weeks until we move!!) so we feel that we will have some immediate support in the area.
 
I'll keep everybody updated on the changes with Brycen as they happen...and of course let you know how he accepts the actual move and many changes in his life as he adjusts to all of this!

It's IEP Time!

It's time for Brycen's IEP for this year and it's scheduled for tomorrow afternoon!  As some of you recall that followed our blog a year ago, we were not happy going into or leaving Brycen's IEP last year.  Though the "I" in IEP is supposed to stand for "Individualized", we sure didn't feel like it was that way.  It felt like the old school district was lumping him into a group of other kids with ASD's that had went before him and the graphs and rubric showed that.  The new "goals" were to be implemented starting that August when the new year started (they denied him extended year because he supposedly did not meet the qualifications).  Lucky for him and us, we found out in mid-August that we were being moved for Mike's job so thankfully he was only in the room for about a month before we officially moved.
 
Since starting at the new school, things seem so much more organized and focused on what he specifically needs and not what kids have been there before him.  This school/teacher has sent multiple papers home over the year asking our input before conferences and before the IEP about what we feel is going right, what we feel needs to be worked on, etc.  We have been made to feel like our input as the parent is actually valuable!!  We go into this IEP at the new school tomorrow with no reservations.  I always feel a little sick to my stomach before these types of things and any other parent with a special needs child can empathize with that.  I still feel that way with this meeting, but it is not nearly as strong as I felt last year!

For those who have never been to an IEP meeting for a child receiving special education services, here is a rundown of who will all be present:  us, his current teacher, his kindergarten general education teacher, his kindergarten special education teacher, his occupational therapist for school, his speech-language pathologist for school, educational consultant from AEA, and the principal.  It takes this many people to plan for his special education services for the next year!
 
Our goals for the coming year for him will of course be focused on communication and socialization.  We are also wanting an associate with him at all times to help with hygiene, transitions, etc.  The teacher uses our input to put together ideas of goals/rubric/graphs after assessing his progress over the last year on the current goals.  We do not have to agree to the goals written (though I'm pretty sure we won't have any issues this year) and can ask for changes to be made.  We can also ask for an addendum IEP at any time during the year though we have not felt that need since moving to this school.  IEP's are legal documents and the school must follow them.  There are special rights that children with IEP's and their parents have though luckily I have not had to research this too much yet because of how confident I am with this school district.
 
On the emotional side, IEP's are not fun because you once again see on paper just how far behind your child is from his peers and how he needs specific goals to work on besides the general education goals that every child in kindergarten has.  I know it's never going to be easy seeing and reading all of this about Brycen:(  I don't think anyone goes through pregnancy and birth with the hope that they will get to be the parents on the other side of the table at an IEP.  But it's something that God chose for us to go through and we know having an IEP sets out a plan for Brycen for his educational years to help him make the most progress possible with the most support he qualifies for, so with that in mind, we will go into the IEP knowing that this is the best for Brycen and knowing that he has a wonderful group of people sitting all around that table!

Here is a fun poem that talks about IEP's that some of you may have read already, but it helps lighten the mood around times like this!
http://www.child-autism-parent-cafe.com/ieps.html

A glimpse of what lies ahead for Brycen in the coming year!

I've had a rough week emotionally. I actually chose to stop reading things about Autism this week and am taking a break from the "in your face" articles and websites that just make me feel sad. While I know we are doing our best for Brycen within our living area and financial means, I don't think I will ever feel like I am doing enough for him!

I took the opportunity this week to talk to his speech therapist at the hospital about increasing his sessions. Currently, he goes to therapy two times per week for 1/2 hour each with Mondays being a co-treat session with OT and Speech, and then Wednesdays is only with speech. I had been reading about children going to hours and hours of therapy a week (and I'm not even talking about the ABA stuff, just OT/Speech/PT and other therapies) and it made me feel the need to re-evaluate where we were with him. He obviously has made some progress over the past few months and with the addition of his communication device, I feel like we need to start pushing forward and testing his ability for more. The speech therapist agreed to extend those two sessions to 45 minutes each and we did discuss possibly adding on a Friday session. She needs to get a doctor's order for the increasing frequency of seeing him (insurance purposes of course!), and is going to discuss having OT do the same and see him two of the days instead of only one each week. Talking to her reminded me that it wasn't just me that was holding him back in session time, but it's his ABILITY to do that. He has a hard time with attention span and staying focused, and while we feel this may be getting better, we know it will always be an issue with him so he will never be the child that can withstand hours of therapy a day. I have read that some people say that their children can withstand this much therapy because it's also play time for them...but Brycen honestly prefers to play alone or in his own way. He likes for us to play certain games with him, but he can be very content to stare out the window at cars or turn his bubble/sensory toy over and over for an hour. Who am I to say that he can't do those things he enjoys and instead be required to do more hours of things he just doesn't always seem happy to do for that timeframe?

In addition to attempting to increase therapy, we are also preparing for his IEP on April 26th. Mike might have to work due to a co-worker being on vacation that week, but I am so confident and happy with this school district that it doesn't even scare me to go at it alone. Pretty much everything that will be discussed that day has already been touched upon during his conferences and other meetings/paperwork over the last 6 months. It is so nice to work with a school that takes education and special needs so seriously!!

My mom, Brycen, and I went to visit the Special Education classroom yesterday afternoon after Brycen returned home from pre-school. While Brycen will be placed in a general education room for the majority of the day in kindergarten, he will also have a Special Education teacher that will pull him out for specifics (and she is also his teacher for Extended School year this summer). After meeting and observing the teacher on Friday, it is obvious that she knows what she is doing and loves what she does! She even has a therapy dog that comes to school every day with her! She explained a basic schedule of his day while in kindergarten and it's split between group time/recess/meals/centers/music/PE with the general education room, and then a few times throughout the day where he is pulled out to work on specifics like their new pilot program, Teach Town, and writing/math. We are pushing for an associate to be with him also throughout the day for many reasons including he is not even close to potty-training and still wearing pull-ups, as well as needing help with transitions, social skills, and other settings that could bring on behavioral issues.

He will continue to have individual sessions with the school's Speech Therapist (though the minutes allowed each month will be decided at his IEP in a couple weeks) and is currently being re-evaluated by the school's Occupational Therapist. As you probably remember, he was evaluated back when he started 3 year old preschool in the old town, but as he is getting older it's becoming apparent that he is behind and needing help in more and more areas. The old school said he didn't have enough issues to warrant them funding OT during the day which is why we seeked out the hospital over there to do some OT sessions. We continued the OT session at the hospital in this new area, and are now just getting around to asking the school to do the re-eval so he can possibly see an OT throughout the month in school too.

While I do believe he is behind in areas that Physical Therapy would work on, I know those are the least of what he needs to work on. I may look into an evaluation through the hospital in the future, but I really just want to concentrate on him being able to complete daily living tasks that require his fine motor skills and of course increase his communication skills as much as possible.

I look forward to what is to come with Brycen over the summer and next school year! I always hope for growth and more understanding of what he needs on a daily basis, but I really just want him to be happy, healthy, and able to have opportunities available to him to learn and adjust. He has an amazing team of people surrounding him!!

Brycen and his Communication Device!

Brycen has been awesome with his communication device since his came almost two weeks ago! We are so blessed to have had insurance cover this so that he can have a way to communicate more than his grunts, pointing, and yelling:) He has been taking it to school each day and to therapy twice per week and is so consistent with it. Of course the therapists are excited to use it with him since they had a big part in helping us get it! The teachers and school SLP are also very excited and have been brainstorming various things for me to program for their use at school. We were so excited to read the great note that his teacher wrote in his communication book today that goes back and forth to school in his backpack. "Another child was grabbing at it, Brycen pushed the button that said 'This is my communication device to talk...' He was standing up for his rights and knew what he wanted to tell her." Up until this time, the device has just been used to make choices and encourage various requests like please, more and thank you. This is the first time that we have heard/observed him using the machine for functional communication!! How amazing is that to not only have him stand up for what he knew was his, but he also did not choose aggression to communicate (which is usually the case)! ABC update: He continues to work on this multiple times per day and is getting so good at it! We tested him on an ABC game on the computer where it will say the letter when he pushes it on the keyboard...and he actually chose to do it in order of the ABC's with my help on only 3 of the letters! So not only can he voice the sound of the majority of the letters, but actually does know the order they go in during the song. He can also type BOTH his first and last name on the computer or the keyboard on his device accurately about 75% of the time. He's great at first name but still learning the entire last name and sometimes wants to put the R before the E or forgets one of the M's. We are so very proud of him and his accomplishments over the last several months!!

Brycen's latest happenings!

A few things to update from the last week or so...

1. Brycen is doing GREAT with his trial device! He knows how to navigate from page to page, how to clear the words, and how to turn it on/off. He uses it at home every day, has used it at a few speech therapy appointments, in the community a couple of times, and at school during Kindergarten round-up last week. I am also sending it to school with him this week as it is our last week of the trial and I think he is ready for it. The teacher and associates are just as enthusiastic about giving him a voice in place of the basic PECS cards he chooses from. I programmed in a few of their circle time activities so he can just push the button to tell them what "job" he wants for the day and what kind of milk he chooses for snack. Next Monday is his last day with the device and then we just sit & wait while people that don't even know Brycen make a decision on if this is the right device for him, will it benefit him in the long run, and will they pay for it. Very scary to think it's a possibility that it could be denied:(

2. We had a conference on Monday to discuss options for Kindergarten. It was agreed upon that Brycen will attend the every day/all day kindergarten class next year. While he cannot do all the things that the typical child going into kindergarten can do, he needs that consistency of all day/every day to make progress and keep his routine in place. His "score" on the kindergarten testing was actually a 22. When his teacher showed me the rating scale, the lowest category was 25 which was the bottom part of the 3 1/2 yr old level. While you would think this would upset me to see his score not even be on the chart, it actually reassured me that we know exactly where he is developmentally. 1 1/2 years ago at U of I, he was at a 16 month old level with communication...last summer at his first speech evaluation, he was at an 18 month old level...and now it seems like we may be getting closer to the 2 yr old level. While his actual speaking is not at this level, his other ways of communicating and understanding what is being asked of him is progressing him along. The discussion will continue over the next few months and through his IEP meeting in May about having a 1:1 associate with him. The feedback so far is that it is very important to do this to set him up for success!
In addition to all of this great news, we also learned that Brycen DOES qualify for Extended School Year! Last year, the old school district was very adamant that he had to show regression following an extended break from school before he could be approved...but this district says he meets other standards that qualify him. Mike and I hadn't even asked about this yet and were very surprised when his teacher pulled us aside in the hallway to let us know they discussed it. This is just one more thing that proves this school is very good at advocating and supporting special needs. He doesn't need to be in a secluded special needs school to get the support he deserves if he is here! We aren't sure of the dates yet, but I believe it is spread out over the summer over a few weeks. It'll be so beneficial to him to keep that "foot in the door" so to speak. As a parent, I will do anything in my power to prevent regression again. We've "been there, done that" when he was 2 years old, and when the district told us this last year, I was on a quest to get other services to keep him going (which is when we started speech and OT at the old hospital clinic). I don't care if that would have prevented him from qualifying then, but I would rather him be home all summer and me have to work my tail off to help him stay at his level, than to risk him going backwards again.

3. On a not so good note, Brycen did one thing yesterday that I have been dreading. When I had my back turned to him while putting on my shoes, he opened the front door on his own. We have been lucky in that his fine motor skills have not allowed him to do this before, but I guess he has now figured it out. As you recall, we recently started having him wear an identification bracelet for when times like this would come. He does not understand the lock on the knob yet, so we are safe for the time being as long as we remember to keep it locked. He is also very cautious about being away from us still, so hopefully that will be in our favor with this newfound skill. It's just really one of those moments that scared me and made me realize how important it is for us to be one-step ahead of his progress. I think we are doing pretty good so far and hoping we can continue to do that in the future as he gains more "skills."

4. Brycen has been consistently taking his new medication for the past 2 1/2 weeks. After some trial and error, we found we have to mix it with chocolate milk to hide the bitter taste. While we haven't noticed any improvements in his OCD behavior and anxiety, we have not noticed any side effects either. She did say it takes up to 4-6 weeks to see results and because he is on such a low dose, we have the ability to increase it too. We return to see her the first week of April to evaluate.

4. Here is the link to Brycen's team page for the Iowa Walk Now for Autism Speaks that takes place on Saturday, June 11 in West Des Moines. We have 23 walkers signed up already and would love to have even more come out and support him during this special day. We are also asking that everybody consider a donation to the team. No matter how big or small, every dollar counts towards research and support of those diagnosed. The statistics keep rising and it's very scary to see that...and we need all the help we can get to the bottom of this disorder! We NEED your help!
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=447324&lis=1&kntae447324=3DB34045D82E43CB8B00563398FA3B7A&team=4010797&tlteam=0

Preparing for Kindergarten!

The next several months will be spent slowly preparing for kindergarten! With Brycen unable to understand all the changes that will occur, it is necessary to span this out over several months and in several steps so that we are setting him up for success.
At his last conference a couple weeks ago, we began the discussion of needing a 1:1 aide with him all day in kindergarten. It really seems like this school is motivated to help Brycen as much as they can and the Education Consultant even said the words "we don't need to set him up to fail." We discussed that if we don't start things off right, that we may have to backtrack later and undo negative behaviors. We know that he will spend some time with the general education room and then also have a special education teacher to oversee his IEP and pull him out for specifics. He of course will continue with 1:1 speech therapy at school which is currently at 1 time per week, and we are hoping to add on OT at the school also next year (will need to redo an evaluation by AEA for that).
What really impresses us about this school is how much they prepare for these transitions! When we first moved here, they took the time to make up a binder of pictures of the classroom, teachers, entrance to the room, etc. On his first day, she already had a picture schedule on the wall and transition cards on a lancet around her neck. They didn't miss a beat with him transferring!
Once again, they are impressing us with the kindergarten preparation. He will be participating in kindergarten round-up next Friday from 9a-2p and they know it will be such a change for him, so they are assigning him a 1:1 for that day. He currently does not have an aide in the classroom, though there are two aides for other children. One of those aides is being pulled to be with Brycen so that he is familiar with them. They are also asking the kindergarten teacher he is assigned to for that day to come down and visit with him a couple times before that day. In addition to that, kindergarten means he will no longer be eating meals in the classroom and will be going through the lunchline and eating in the cafeteria. In attempts to help him with doing this next Friday (and for the future), today they started taking him down to the cafeteria for lunch. The teacher wrote me a note that said when they got to the door, he became fussy but the aide that was with him was able to get him to at least go in and get a tray. She said they will continue to work on this each day leading up to next Friday to hopefully improve each step.
I know eating in the cafeteria will be a huge change, as well as very stimulating to him with the noise, smells, distractions, etc. I am so proud that he was able to take that first step today! He is adjusting so well to changes lately and is showing us every day how hard he works. It seems like not too long ago all I could think about were the negatives in his behavior. When I read back to those first few months of blog entries, I can't believe the progress he has made and all of the opportunities we have taken on to help him. Just the last few months by themselves have been huge!!
Thanks again for your support and I'll be sure to update soon with pictures of Brycen and his trial communication device. He's already used it twice since coming home from school to show me what he wanted to do. I love the smile and excitement on his face when he hears it say the words back to him!

What a scare!

It's been a rocky day in our house! As soon as Brycen woke up this morning, he just wasn't happy. He spotted the train t-shirt in his drawer and "insisted" on wearing it...it's short sleeve and it's absolutely freezing today. I gave up the battle after a couple minutes and figured it just wasn't that big of a deal. Then he wasn't happy with what I gave him for breakfast, but when I lifted him up to the cupboard to pick what he wanted he wouldn't point to anything else. Then when it was time to get shoes/coat on for school, he sat down on the floor and screamed. I tried his picture schedule which has worked well in the past when this has happened, but to no avail. He screamed and fought me the entire time while getting his shoes, coat, and hat on. Then he threw his backpack at me so I just turned and started walking out the door. After running after me, crying and screaming, he finally decided to put it on and get in the car.

12:20 rolls around and I am standing by the window waiting for the school van to pull up. I'm waiting and waiting... at 12:30, I start to get this horrible feeling in my stomach. I should back up here and let you know that I also heard police sirens around noon and though that is not a common thing in our small town, I didn't really think anything of it until Brycen was 10 minutes late coming home. I began fearing the worst...car accident. I didn't know what to do! Then the phone rang and it was my mom and before she even got the words out, I knew it was about Brycen. There was a bomb threat at his school and all the kids were bussed to churches nearby for evacuation while the school was searched and luckily the local news had said which church the elementary kids went to. So after calling the church to confirm, I loaded up Aubree in the car and waited in line for almost 15 minutes before I could get to him.
At this point, I'm sure all parents can empathize with the fear of not knowing where your child is and of course of the scare of a threat of harm to the school where your child is supposed to be safe. My fear went even deeper because I know how Brycen reacts to stressful situations, change in routine...and I also knew he recently developed a fear of school buses. About a year ago, his old school had practiced an evacuation drill like all are required to. That's all great and fine, but when dealing with special education students with sensory issues, you need to take precautions to make sure they are taken care of and not distressed anymore than necessary. Well, despite the teachers knowing how Brycen (and many with Autism) have a huge fear of loud noises...the backdoor of the bus that Brycen was getting into was left open so the loud siren-like noise was going off and of course, Brycen freaked out.
Fast forward to today...as soon as I heard they had bussed the kids to the churches, I knew there was a problem. Yes he did freak out when they put him on the bus and eventually was able to calm down once the bus started driving away. BUT he did ok...he got through and he seemed somewhat happy when I picked him up. A little nervous with the crowd of people, hiding his head, and making unhappy noises, but not too bad.
I guess I don't know what the point of this post really is and how it really pertains to his autism. I guess the fact that the situation could have been easier for him if past personnel had taken into account his sensory issues. Brycen has enough fears right now, and being that a school bus typically is part of a child's school years, it does upset me that they triggered a new fear in him that could have been prevented. Just like when someone suggested that I cut his hair in the bathtub. He loves taking baths, but hates getting his haircut. Why on earth would I want to put him through the trauma of a haircut in a place he enjoys?! I don't want him to start hating baths then. There is just so much to think about and be cautious with in children on the spectrum...and it never goes as planned, but at least we can try to make life's happenings as easy as possible.

New town, new house, new school...calls for a whole new routine

The last two weeks have been absolutely crazy! We pride ourselves in keeping a predictable routine for Brycen as we know he relies on this to thrive and be comfortable in his surroundings.

Those who know him know how he can get stuck in a routine and if one little thing happens, it can be disaster for the next several days. Those who know him also know that he can surprise us with adapting to change when we least expect it.

Mike and I worked hard at unpacking the entire house (except for some select boxes of wall hangings and such) from the time the truck delivered on that Wednesday morning and I drove the almost 4 hours from SL to Strawberry Pt, until Thursday afternoon when the kids arrived with my parents. It was non-stop work...exhausting! We knew if we were going to have any luck at Brycen adjusting, we had to make him comfortable from the beginning which meant he could not see the new house without his belongings set up and ready for him.

We also knew he would be adjusting to a new school, new teachers, new town, new therapists and hospital, around him at the same time. All of this change would be hard for any child, any adult...and here we are, forcing so much on him at one time.

I am so happy to share with everybody that Brycen has exceeded our expectations in adjusting to everything! There was a bit of a rough start to school with him being very attached when we did an initial visit that Friday morning, and with him crying when I left him there the following Monday morning...but that was it. He eagerly gets his backpack and shoes when I tell him in the morning, walks into the school with a smile, and waves/says "bye" to me with prompts when I leave. He also rode the school van home today with NO PROTESTING! Our goal is for him to be able to ride to and from school every day. The van driver did tell me he became a little upset when she turned off the main road to drop off another little girl first...but he did calm down when she reassured him he goes home next. Amazing how only a week of going back and forth to school and he knows the direct route to our house!!

Not only has this adjustment went well, he has also proved to us that he can fall asleep on his own. We knew we did not want to carry him up the stairs to his room after rocking him every night, so we decided to put the rocking chair in his room just in case. We did rock the first night we were here, and he protested the rocking in his room at first. He is so used to rocking while I am watching TV and he kept trying to get down and wanted to leave his room. I decided I was not going through the fight every night and would just have to figure out a new routine at night for him. So the following two nights when Mike was at work closing the store, I vowed to myself that I would make him lay in bed to fall asleep no matter how upset he got or how guilty I felt. He surprised me in not protesting laying in bed at all by himself. The first two nights were very busy and time-consuming, as I would tell him I would be right back and leave the room for a minute. I gradually worked up to about 10 minutes and he fell asleep! I think I went in and out about 8 times the first night...and only about 5 times the second night. Now, over a week later, he is still doing this every single night and now we only have to go in 2-3 times before he falls asleep!

Now, as I type, we are preparing for his first appointment at the Manchester hospital for his speech and Occupational therapy this afternoon at 2. I'm going with no expectations, knowing he has proved me wrong lately in that he can fall asleep on his own and he can ride the van home from school with no problems. I know there could be protesting to a new environment and new people he will work with...but if this is the only negative reaction we see to all of this change, it reassures me that he and we have made a whole lot of progress in the last year in this area!

Brycen's first day of 4 year old pre-school!

I know all parents get nervous and excited at the same time for their child's first day of school no matter how old they are. Of course, I am not exception...though I feel like we had a lot riding on these first few moments once we get to the school. When we visited last week, Brycen began crying when we pulled into the parking lot. I ended up having to carry him into the school and when I sat him down outside of his new room, he began screaming and running down the hall to the room he was in last year. He needed a lot of bribery (suckers & chips) to go into the room and sit/play while I filled out the registration paperwork.

It all seemed to turn around when we went to the store to get his new backpack that night. I'm not sure if holding onto a backpack made him remember how much fun school is, but since that day, he has once again been trying to imitate the word "school" when I say it and also smiles each time we talk about it.

He carried his backpack around all morning and wouldn't even put it down while I got him dressed in his new Thomas the Train shirt. He loves Thomas so much that it's a nice comfort for him to have a picture of him on his shirt to look at. He didn't even want to take his backpack off to sit in his carseat!!

Once we got to school, he started smiling and jabbering away and was so willing to walk in like a big boy. When I pointed to his name on his hook in the hallway, he smiled and began shrugging his backpack off. It's amazing that after 3 months of not doing this, he immediately remembered this is where his backpack goes! He walked into the room and immediately sat down on the floor where they had a bin of blocks. The only sad thing for me is that he completely ignored the other children in the room. 3 others were already there (out of the 14-15 for the entire room) and were all sitting at a table coloring, while Brycen immediately began making a train of the blocks on his own. The good news is he gave me a hug and kiss (with a little force on my part) and waved "bye" like it was no big deal. For once, I was not the parent with the child crying or running around!I had such mixed feelings walking out of the school with Aubree. I am looking forward to once again spending more time with her and being able to run errands without all the preparation and worrying about tantrums constantly, as well as for him to be around other children his age to learn social skills. On the other hand, I once again am having to relinquish my control of who he is around, the consistency of expectations, ensuring that he will receive ongoing encouragement of speech, how he is being approached, and protecting him for these several hours a day. When you have a child that needs so much monitoring and help in so many different areas, it's very hard to let others take control over that for 6 hours a day and then you worry about regression again and having to start over with all the progress we have made over the summer.

I'm sure each year will get easier with this and I have to remind myself this is only his second year of school, and the progress he makes each year will hopefully encourage me that relinquishing this control is benefiting him so much.