It's been a while...

Disclaimer-this post is from April!

I've hijacked Brian's blog for the time being as Brian's schedule has been pretty full.  Samuel continues to received ABA therapy three times a week and progress is being made in some areas. Samuel is learning to ask specifically for what he wants.  Learning to ask for the specific item has cut down on some of his frustration.  We are also working toward potty-training and proves to be more difficult than expected. Samuel has learned to "push out" his urine but has not yet figured out the feeling of having to go.  If he is wearing underwear and has not fully emptied his bladder he will go where he is standing with little understanding that he urinated on the floor.  We have faith that he will be potty-trained in the future with the understanding that Samuel's development will not be "typical."
    Samuel has become very rigid in his routine and schedule and we have to stay one step ahead anticipating any surprises.  He uses a visual schedule which allows him to see what is coming next. We also verbally inform Samuel of any changes to his routine. For example, if I know I am not going to pick him up from school, I have to tell him at least a day in advance and I have to tell him who will pick him up.  If Samuel knows the changes to his schedule(even if he doesn't like the choice)  he seems to adjust better.  However if a change occurs to his routine and we haven't explained the change a meltdown usually ensues. Meltdowns continue to happen a few times a week and usually stem around his inability to fully express his frustration and when these moments occur it's trial and error to find the source of the meltdown.
    Samuel is acquiring more language with his vocabulary has been expanding it tremendously. He is able to talk in sentences putting several words together.  Much of the conversation is one sided meaning that he does not engage in conversation. He will ask for things he wants and he will speak when he wants to show us something of interest (currently he is very attached to his Thomas and Friends mini trains and only desires to play with a certain few even though he has very many). He can't answer open ended questions like, "How was your day"? or "What did you do today"?, even asking him what he wants is difficult for him to answer. As his speech and language are developing he presents echolalia, which is a repetition of speech and many children with autism exhibit this.  Often if we ask him an open-ended question he will repeat the question instead of giving an specific answer-he also uses more echolalia when he is tired, frustrated, or focused on an activity.  We are learning when we ask him a question we should give him a specific choice such as, "Do you want milk or water to drink?", and then he is able to give an answer.
     A major change in our family occurred after Thanksgiving when I stepped down from my position as a chaplain at Lower Cape Fear Hospice & LifeCareCenter.  It was a very difficult decision to make as I had come to love the work I was doing, but trying to schedule visits with patients(attend meetings, document, and travel back from visits which could've been anywhere in Onslow County) pick Samuel up from school at 11:30 each day and have him ready for therapy in the afternoon (three days a week), and get Cameron from school. I became very overwhelmed. For this season in my life I am at home and while I miss my work terribly at times, I am where I need to be. I feel like the level of stress and tension in our home has lowered and that is beneficial for everyone. In the process of being a stay-at-home-mom, Samuel has become very attached to me and has separation anxiety if he does not know where I am. He does great at transitioning to his classroom each day, but I have to let him know in advance if I will be away even if it's taking a walk/jog around our neighborhood. He doesn't like it and I often leave him in tears, but if I don't tell him where I'll be it will result in a meltdown.  I am grateful for his love and affection-he loves to cuddle and will find his way to my lap in the evenings and sometimes drift to sleep.  Some children with autism have sensory issues with touch and do not want hugs but Samuel hasn't exhibited any signs. I am grateful for those times he wants to cuddle (even if in the moment I need a break) and I look at it as a way he communicates with me.
    Samuel continues to attend Pre-K five half-days during the week and I believe this is a good balance for him. He had his annual IEP review in January and everyone was in agreement that this was a good plan.  Samuel becomes over-stimulated easily in the classroom which results in some unwelcome behaviors (knocking kids toys down, running in the classroom, sometimes hitting and kicking) and by week's end he is tired. Staying until 3:00 pm would only increase those behaviors and would inhibit learning. Brian and I feel very blessed with Samuel's teachers, Mrs. Pajak and Mrs. Cassandra. They show much compassion, understanding, and patience with Samuel and truly care about his success in and out of the classroom.  Kindergarten registration is coming up the first week of April and the plan is to register him. Brian and I will have a Kindergarten transition meeting sometime before the school year ends to discuss what the plan will be for Samuel next year. At this time we don't know if Samuel will be in a traditional classroom or what kind of support or resources he will receive in the next school year, but I am hopeful we can come to a consensus that will most benefit him.
     Samuel is also participating in TOPSoccer, which is a nation-wide program that offers soccer for kids with physical disabilities and/or special needs. There were around 62 kids in the Jacksonville and surrounding areas who participated and everyone seemed to have a great time. Each child receives a jersey, is on a team, and has a buddy who assists him/her during practice.  This gives children an opportunity for socialization and participation in a sport they may not otherwise be able to.  Samuel's buddy works great with him and is very patient as Samuel has difficulty focusing and is easily over-stimulated.  Samuel has a great leg on him and can kick the ball pretty far for his age.  I feel Samuel is having fun when he plays and that is important to me.
     I could go on and on with this post but I will digress for today.  Everyday is a new day and with autism I've had to learn to take it one step at a time.  Some days are better than others and being patient is the key (although I fail with patience at times).  April 2nd is World Autism Awareness Day and for those wishing to participate I encourage you to wear blue.  Hopefully this blog will be updated more often-you may see more post from me and some from Brian-and our hope is that this blog will raise awareness and acceptance for autism.

Blessings!

April

A Busy Month

It has been a busy time for Samuel since the last post.  He has started school, been on an overnight trip, continued ABA Therapy, and experienced the transition of a new vehicle.  April and myself had two cars that were both getting high in mileage (but paid off).  Samuel refers to these rides as the "white car" and the "big red car."  Without a doubt, Samuel prefers the "big red car."  In fact we have to tell him ahead of time if we are going to drive the "white car" so he doesn't have a fit when it is time to leave.  April and I reluctantly decided that it was time to look for a new vehicle.  The "big red car" had a over 200,000 miles and was 11 years old, so we decided to trade it for a newer vehicle.  Luckily we purchased a car that was also a red mid-sized SUV, very similar to the previous vehicle.  As I was driving home with the purchase, I called April to start talking with Samuel about having a "new big red car."  She told him.....but it didn't seem to register with his mind.  When I pulled into the garage, April opened the door and Samuel was right there looking.  He immediately started to scream at the top of his lungs.  For the next 30 minutes he cried, but not the type of angry scream he usually makes.  This was a cry where he was genuinely hurt, almost like he was grieving the death of a loved one. After attempting to soothe him, we eventually just allowed him to cry it out.  We discussed that we still had a "big red car" it was just a newer one.  He then started saying "new big red car" and would peek out the door every few minutes.  He now refers to it as the "new big red car" and seems to have adjusted well to it.  We saw a vehicle yesterday that looked very similar to the old car.  Samuel made a comment about it forcing April and I to look worriedly at one another.  However, Samuel didn't dwell on things but just kept walking.  He seems to be adjusting to the "new big red car."

The morning after the purchase of the new car we headed to Greensboro to visit my brother's family and celebrate our niece's third birthday. He enjoyed riding in the "new big red car" and for the most part he did well.  Although he did not want to go to sleep at bedtime.  He kept getting-up before April and my sister-in-law laid next to him and sang until he finally dozed off.  Other than a few meltdowns here and there, he handled the trip very well.  He still asks to go see "Caraline and Lauren" (his cousins).  Although he doesn't always interact with other kids, he does seem to enjoy being in the presence of children.

Recently he has been getting up almost every night and hopping in bed with us.  This usually involves me heading to the couch for the remainder of the night.  One time this week he decided to get up after I moved to the couch and he hopped on the other end.  This gave me permission (I thought) to go back to my bed.  However, Samuel quickly screamed when he saw me get up and ran in there behind me.  I couldn't figure out which way he wanted me to go. Nonetheless, we came to the conclusion that he seems to want to be around April or myself when he sleeps.

Samuel has been back in school for about a month.  Currently his schedule is M-F from 8:30-11:30 am.  He seems to have adjusted well to a new school.  Fortunately he has the same teacher assistant as last year and he knew his teacher also from his old school.  April drops him off in the morning and she says he has been much more receptive to going than he was last year.  His lack of verbal skills can be an issue when he's communicating with classmates.  He seems to enjoy being around other children, but doesn't understand social cues with how to play with them.  We have heard of times that he has pushed his classmates, knocked over their blocks, and pulled eye glasses off other children.  I'm assuming he is trying to get their attention and doesn't understand that this is the wrong way to do it.  However, as a parent it is very disheartening to hear that he is doing this.

ABA Therapy is continuing three days a week and he seems to really enjoy it.  His therapist has been wonderful.  She is working with him developing a schedule, using the potty, following directions, and using words such as "please."  The therapist explained that he hasn't said "please" in the past because he doesn't know what "please" means.  If he wants a banana then that's all he wants, he doesn't want a "please".  His mind is much more black and white, instead of gray.  Since she has started with him, we are noticing that he will say "please" more and more (especially when he really wants something).  We certainly consider this progress.

Thank you for continuing to read the blog.  As I say each time, I will try not to wait so long between posts. Eventually I will surprise you with a quick turnaround!

Brian

Summer Time

I guess you can say I have taken a summer break from the ole blog.  Recently it has been more a case of writers block/being lazy.  In fact, I started this post two week ago and am just now getting back to it.  However, there has been some exciting things to take place since the last entry.

 One huge bit of news is that Samuel has finally started ABA Therapy.  He began in early August and the therapist comes three days a week to our house for two hours at a time.  The therapist has quickly developed a rapport with him.  I've only had the opportunity to be present once during a session, but it was evident that Samuel seemed to be doing well with it.  April has been to all of them and she says that it is coming along good.  Samuel has to work pretty hard during these two hours and I think he gets tired at times, but he seems to be making progress.  There have a been a few tantrums that he has thrown during the sessions, but he consistently overcomes them fairly quickly and gets back to it.  We are looking forward to seeing the impact that it will make on him!  

Anyone that regularly attends the 11:00 am service at First Christian knows that Samuel is captivated with the Sound Room.  He loves staring at the dozens of buttons/knobs that are on the sound board.  Each Sunday without failure he enters the sanctuary and runs straight to the Sound Room.  I'm terrified that he is going to start playing with a bunch of buttons that will mess up the sound/video for the entire service.  However, mostly he just likes to sit down and stare at them.  Ken, Cindy, and Bailey are incredibly patient with him.  Some weeks after he sits there a few minutes, he will tell the room "bye" and move on to sit down in the pew.  Other weeks are not so smooth.  We've had a couple of times that he has had to be taken outside the building to calm down.  One time I took him to the car and had to let him sit for 20 minutes before he finally calmed down enough so we could go back in for the service.  Last week, we decided to attend the 8:30 service (which meant going to Church before Sunday School) and it threw him all off.  He did not like the idea of walking into the sanctuary first, so April ended-up taking him to the Sunday School room and having to miss the service.  As parents, we have to remind ourselves that sometimes we can't just do things on the fly with Samuel.  He has his routine and it is probably going to be difficult when that is broken.

We are very excited that Samuel will be going to Richlands Primary for Pre-K this year.  This is the same school that Cameron attends and it's less than two miles from our house.  Today, he visited his classroom and met his teachers/classmates.  His teacher assistant is the same one he had last year and his teacher is someone that also transferred from his old school who already knew him.  They had it set-up where we visited the classroom first, then the parents went to the Media Center to complete a parent orientation while the children remained with the teachers in the class.  April and I were nervous that Samuel would not like us leaving him.  However, when we came back to the classroom over an hour later, he was playing and perfectly content.  The teacher said he was good the whole time and didn't seem to mind us not being there. His first day of class is September 6 and he will attend five half days a week.  We are hopeful that he will adjust well to the new environment and show great progress the upcoming year.

Thank you for taking time to read.  We greatly appreciate all the kind words and assistance we receive on a daily basis!  God has richly blessed us in may ways!

Till Next Time,

Brian

Vacation

I have been extremely bad about writing in recent weeks.  It seems that the long days of summer have left me with little time to sit down and write.  Thank you for your loyalty in reading and your patience with my slackness.

Samuel seems to be enjoying his summer vacation.  There have been a couple of times that he has made a comment "let's go school," but for the most part he has easily adjusted to the idea of a summer break.  Last week, April and I took vacation from work.  We were originally planning a trip to Atlanta, but as I mentioned in a previous post we decided this would not be best for Samuel.  Instead we stayed closer to home and did several activities.  Our first day off we made a trip to Myrtle Beach where we visited Myrtle Waves water park.  Samuel had a wonderful time!  He enjoyed the water slides in the kids section, the lazy river, and all the pools (especially the wave pool).  Playing in the water seems to make him very happy. Hopefully next summer we can get him swimming lessons.

Last week was also Vacation Bible School at our church.  We were able to go Sunday, Monday, and Tuesday nights.  Samuel was in the Pre-K class with six other children and I had the opportunity to stay with him as the class went to the various events.  I thought Samuel handled this really well.  A good thing about the format this year was that they went to the various stations in the same order every night.  This is beneficial to Samuel who loves routines.  By the second night he knew where the class would go from session to session. Unfortunately, the last session involved going to the craft room.  On the first night, he was getting tired by this point and starting to get fussy.  I decided to take him home, however there was only 30 minutes left for the night and Cameron was in another class.  Instead of going home and coming right back, I took him to the playground which Samuel thoroughly enjoyed.  However, that also meant that it was now part of his routine.  The next two nights the exact same order of events occurred, with us skipping crafts to visit the swings instead.

At the end of the week, we spent a few days with my brother and his family in Greensboro.  I was concerned with how Samuel would do spending the night in a new place.  However, he handled the change of scenery very well, going straight to sleep every night.  On Thursday, both families visited the NC Zoo in Asheboro.  The first exhibit we saw were the polar bears.  It was fascinating seeing this massive animal swim back and forth with just a mere sheet of glass between us.  While Samuel was captivated seeing the polar bear, other exhibits became somewhat of a letdown for him.  He kept saying, "see elephants" but they were on the other side of the park in Africa.  Therefore, Samuel hopped in the stroller and took a nap. When he awoke, he largely chose to spend the rest of the day in the stroller.  However, several hours later he was glad to see the elephants.  He also enjoyed the trolley ride back to North America at the end of the day.    

The next day, we visited Pilate Mountain State Park.  We did some hiking around the top of the mountain, which is an absolutely breathtaking view.  Samuel didn't mind being there, he just did not want to walk.  I ended up holding him the entire hike, which had to make me a little stronger.  Samuel had his moments on our vacation, but all-in-all I think he did pretty well.  Considering we did not know what to expect going into it, we were definitely satisfied.

I won't make any promises, but I will try to write sooner between the next post then what I did since the last one.  Thank you for being a loyal reader and all your support.  It means a great deal to us all!

Till next time!
Brian

End of School Year

The 2015-16 school year is now officially over and our boys are quickly adjusting to summer vacation.  Last Friday we had the opportunity to attend Samuel's end of the year class party.  Since Samuel does not attend school on Friday's, he went that afternoon just for the party.  I was concerned with how he would react to us telling him about going to school at a time that is very different from his normal routine.  We started telling him early in the morning that we were going to "Samuel's School" for a party today.  At first he made his usual "bye bye Samuel School" comment, but as the day went on he seemed to accept where he was going.  When we arrived about 2:00 pm, Samuel went right inside the classroom and several of his classmates seemed genuinely excited to see him.  The teacher had the class sit together in the front of the room where they sang several songs.  I was simply amazed by the fact that Samuel sat there attentively with his classmates and participated in the activity.  This seems like a very simple task, but it is extremely rare that Samuel will sit still among a group of people for longer than a couple of minutes.  During this time, the teacher presented class awards to each of the students and Samuel received the "Jagger Award" for the best dance moves.  Apparently his dancing is reaching beyond the four walls of our house.  After this he went straight to his seat and sat down while April prepared his plate of food.  He performed exceptionally well during the entire event and we were extremely proud parents.  His teacher said that he has been showing solid progress over the past month or so, but I think she was also very pleasantly surprised and proud of his behavior at this event.

Since it was the end of the school year, April and I requested an IEP Meeting to discuss Samuel's progress and his schedule following summer vacation.  We met with his teacher and principal on Wednesday at the school.  As mentioned above, the teacher indicated that he has made a good amount of progress in the past month.  She said that he is doing a better job of interacting with his classmates, while also understanding when he needs to separate himself from the others due to becoming over stimulated.  We reviewed his current IEP and decided to keep everything as it currently stands with the exception of his amount of time in school. It was recommended and we agreed to having Samuel start the new school year by attending five half-days a week, up from two half-days this semester.  The goal is to get Samuel adjusted to the idea that he has to wake-up and go to school M-F.  We are also hopeful that by the end of next year, he will be able to adjust to staying for a full day.  April and I are most appreciative to his teachers for the work they have done with Samuel this year. Progress is sometimes small, but every little bit is positive.  We appreciate the kindness that his entire school has shown us. It is great to have a positive support system and I think Samuel is benefiting from this environment.

This afternoon I had the opportunity to spend a little daddy time with just Samuel and myself.  We enjoy playing tickling games like "bore a hole," "paddy cake," and one we invented called "brown eyes."  He will hop in my lap and tell me which one he wants me to do.  There is nothing more special than to see him smile, while giving a big giant hug.  Samuel also has a great sense of humor.  As mentioned in previous posts, he knows his letters and numbers very well.  Sometimes we play a game with him where someone says "A" and then Samuel will say "B", then the adult says "C" and we go all the way through the alphabet.  Now when I say "A" he gets this mischievous grin on his face and then says "C" with a huge smile on his face. I try to trick him by saying "D" only for him to reply with "I" or "S" while he is laughing the whole time.  Later, the two of us read some interactive Thomas books together.  He enjoys reading a lot and we hope to continue to tap into this joy of books that he possesses.  I also hope we can work on growing his love for music.  He will occasionally bang on the piano at my parents house and it usually has a good rhythm to it.  Maybe there is an untapped talent waiting there.

As always, thanks for taking time out to read the blog.  It means more than you will ever understand.  I will try to do better by writing more frequent posts this summer (ya'll keep me from slacking off).

Till next time!
Brian

Terrible Two's at Four

Like all children, Samuel has always enjoyed cuddling with April and myself.  However, recently he has become extremely attached to April.  Almost anytime she sits down in the living room, Samuel crawls all over her.  He just enjoys sitting with her and hugging tight.  He will still jump in my lap on occasion, but for the most part if both of us are in the same room, Samuel is all over April.  She is not real certain what has brought about this recent action, but she certainly enjoys it (even if at times, she would like a little space to herself).  I'm guessing that Samuel simply feels secure when he is with April.  It will be interesting to see if this is just a phase or something that becomes consistent.  

Sometimes I think Samuel is going through his "Terrible Two's" as a four year old.  He is reaching that point where he is exploring more.  This is especially the case when he goes outside.  Over the past few weeks, he has started taking off running in our backyard and has ventured into other areas of the neighborhood.  We cannot take our eyes off him for one second.  As a result, we are currently getting bids from fence companies in the area.  Hopefully we can get the back yard fenced in this summer so he can enjoy his playset without us worrying about him wondering off through the neighborhood.  

 

Another phase he seems to be going through is wanting to be home more often than not.  If we go just about anywhere, a short time into the visit he is saying "want to go home" and telling people "bye."  Last weekend we spent the night with April's parents.  We had told him early in the day that we were going to spend the night with "nana and papa".  He seemed to be okay with doing this until about 6:30 that night.  All of a sudden he was emphatic saying "want to go home."  After several tantrums, we gave him a bath before he gradually calmed down.  He fell asleep around 9:30 and slept good during the night.  However, this experience made us question whether we should take a vacation this summer.  Originally, we were planning to visit Atlanta for a few days.  However, after thinking about the noise of the city and staying overnight in a different spot, we have reconsidered.  We are currently leaning towards just taking several day trips instead. Hopefully in a year or two the communication between Samuel and us will be at a higher level so he can let us know when things are beginning to get too painful for him before it reaches that point.  This will hopefully allow all of us to have a positive traveling experience.  

Recently, he has also started throwing items off the shelf.  It is obviously fun for him to do this, despite us voicing our disappointment in the action.  We have noticed that he is usually in a quiet mood, when all of us a sudden he will start running around and go knock everything off the shelf.  After he does this once, it seems to become addicting and wants to do it again despite our objections.  I think he enjoys seeing us get angry with him, so we have started taking a different approach.  We try not to say anything, but simply point at him to go to his bedroom for timeout.  In addition, we tell him to pick-up his mess after the timeout is over.  I'm not sure if this is working or not, but it obviously is something we are trying to work through.  Something triggers him to want to take this action, so we are trying to determine what is the best method to improve.  

Finally, we are still trying to get the ABA Therapy scheduled for Samuel.  It has been an extremely long process trying to get through the bureaucracy of getting the State Health Plan to approve an in-network provider that is within 50 miles of where we live.  We still have not reached that point, but did receive a positive lead yesterday.  I will keep you posted as we try to get this approved and the therapy started.  

As always, thanks for taking time to read!

Have a great weekend!

Brian 

Potty Struggles and Throwing Toys

"Samuel, you have poop running up your back!"  These are the exact words I heard yesterday as I walked in the house from work.  I have briefly mentioned before that Samuel is still not potty trained.  His specialist in Greenville suggested that we not force it while he was adjusting to school.  Occasionally he will indicate an awareness of a wet or dirty diaper.  However, for the most part he does not seem to be overly concerned about a messy diaper.  We have attempted at times to get him to sit on the potty and have him wear pull-ups on occasion.  The pull-ups do not seem to help, as that is what he was wearing when I walked in the door yesterday.  He has approximately one more month left in the school year, so we are going to work hard on potty training this summer.  Hopefully progress will start to be made.

Samuel has recently started going through a different phase.  He has begun to throw items much more and has grown even more attached to other toys.  Today was a pretty rough day for him (and others) at school.  It was a very wet morning commute and April was forced to stop in a different location from where she usually parks.  As you know by now, Samuel does not like for his routine to be changed.  Therefore, this made him upset.  In addition, he has recently become very attached to these tiny Thomas trains.  He has collected every train Sodor has to offer (or so it seems).  Samuel likes to take two or three of them with him anytime we leave the house. Previously, he understood that he needed to leave them in the car when we arrived at our destination.  In the past week, he has started wanting to carry them inside with us wherever we go.  Unfortunately that was also the case this morning at school.  So when April would not let him, she had to carry a screaming child into school.  In addition, since it was raining he was picked-up by his teacher in a different location than usual.  This only made him angrier.  April said as she was dropping him off, he was screaming at the top of his lungs.  The teacher said as time went on he did calm down.  However, later in the morning he hit two classmates with a book that he was holding.  His teacher indicated that this type of behavior is more aggressive although very sporadic.  We have noticed similar behavior recently at home as well.  This weekend he had an episode where he just started throwing toys and knocking items off counter tops, while laughing hysterically.  Obviously he is getting overly stimulated during these moments, but we are trying to figure out how to recognize when these outbursts are about to occur, so we can direct his attention elsewhere before they start. Any suggestions that readers have are certainly welcome.

On a closing note, we did attended the 2016 Coastal NC Walk/Run for Autism in Wilmington on Saturday, April 23.  It was an inspiring event as over 500 people participated in different ways.  My parents pushed Samuel in a stroller, while Cameron ran beside them in the event.  April and myself ran in the competitive race.  Later, Cameron and my niece Caraline participated in the Kids Dash.  There were informational booths for all kinds of support systems that are available across the state.  Overall, it was a very enjoyable event that raised money for an outstanding cause.  Thank you to those who donated on behalf of Samuel.  It means more than you can imagine!

Till next time!
Brian