Physical Therapy: A New Journey

As some of you know, Brycen did not crawl until after he turned one and did not walk until almost 18 months old.  At the time, he was on track with all of his other development so it really wasn't a concern to the doctor.  About 6 months after he started walking is when he began regressing in all of those developmental areas.  He continued to have some issues with gross motor skills such as climbing stairs and jumping.  While he has come a long way in the last couple years with being able to climb stairs upright correctly (though his balance is unsteady at times or when he is carrying something) and he can now jump enough that both of his feet come off the floor slightly, he is still behind in so many areas. 

We have been so focused on his communication and other skills that we just hoped the physical skills would eventually come with some work at home.  His older cousin, Ethan, passed down a bike with training wheels to Brycen a couple years ago and Brycen absolutely loves it.  The problem is that he is 5 years old and still unable to pedal not only that bike, but a big wheel that he received a couple years ago also.  When we put him on the bike, he just rocks his body back and forth.  When we push on his feet on the pedals, he doesn't do anything.  So we just resort to pushing him around while he screeches happily for the ride. 

Last summer, we decided to get him a motorized tractor for his birthday that has a big button to push down with his foot to make it go.  Aubree was also given a motorized power quad for her birthday but the button to go is up by the handle so you just use your thumb.  We noticed Brycen still couldn't figure out how to push his foot down to activate the tractor though he did figure out how to use Aubree's quad.  Unfortunately, he is pretty big for the quad.  Fortunately, he doesn't seem to mind that he can't get his tractor to go and will just sit on it making those happy noises again! 

So over the last year, I have listened to parents talk about children younger than Brycen learning to ride a bike with training wheels and some even learning to ride without.  Some of these children also have ASD's and it reminded me about how he still can't catch on to pedaling.  It's like the wiring between his brain and his legs just isn't connected.  While he doesn't seem to understand all of this yet, I know that it won't be long before he notices other children riding their bikes around him.  I also remember riding a bike through my entire childhood...and to me it's a huge part of growing up.  Having a bike, learning to ride, enjoying the summer with friends!  Brycen has been missing out on so many things already that are a regular part of being a kid...and I refuse to add riding a bike to that list. 

This is where the new journey comes in.  I requested an order from his new doctor for a Physical Therapy evaluation at the clinic he goes to.  I already know who the PT is there and she knows Brycen so it wouldn't be a hard transition.  Tomorrow is the big day for the evaluation and since we've already talked a bit about it, she understands it's the pedaling, jumping, and balancing that he needs to work on.  To the public eye when we are taking a walk, it doesn't seem like Brycen has any obvious deficits since he can walk, run, etc just fine.  But we've let these "hidden" things go on too long now.  We thought it would slowly come, but after a couple years of working on this ourselves, he has made no more progress and it's not fair to him.  We aren't trained to be physical therapists, we are just parents that want the best for our son.  If that means we will be adding on a couple more therapy sessions a week until he catches up, then so be it.  While so many kids his age are out and about, riding their bikes and beginning to play in soccer and t-ball leagues...we will be taking him to and from therapy so he can work hard at learning those things that are supposed to come naturally to children. 

More of the ABC's!

 A couple weeks ago,  we noticed that Brycen was really starting to comprehend the order of the ABC's.  He is still doing awesome at attempting to verbalize each letter, as well as he now recognizes both upper and lower case letters.  He can trace all of the letters and write the letters in his name somewhat legibly with multiple verbal prompts (but without tracing needed).  We are working towards him writing his first name completely independently and I am confident he will succeed at this shortly after school starts next week.  My mom was working on verbalizing the ABC's with him recently and found that he actually does have the order memorized like other kids his age.  She would just ask him what comes next and he would pause before verbalizing the correct one.
Today, while Mike was home on lunch break and making his sandwiches, he told me to look at Brycen by the fridge.  Above is what we found him doing...slowly but surely he put the ABC's in order with the fridge magnets.  We are so proud of him and all of his progress over these last few months!  While we aren't hearing much more verbally from him, we are noticing so much more through his actions and responses.  He is taking in so much from his interactions with others and showing us that he is learning through moments like this.  He works so hard every single day to do these things, and sometimes we don't give him enough credit for what he really can do by himself. 

Brycen is FIVE!

Great day for Brycen!  It all started with a full night's sleep in the camper with Grandma and Grandpa last night which is always excited to do.  Then we had a little cuddle time this morning after they brought him home...Brycen, Mommy, and Daddy...before the sister woke up.  Brycen took turns rubbing our hair and giving us hugs :)  Then we started getting ready for his "party" with the grandparents...decorating the dining room and preparing food.

 

Then we mentioned presents...and it's so awesome to see that Brycen understands what that means.  A couple years ago, it was very hard to get him to sit down and realize they were for him and how to open them.  The Christmas before his dx, he would just pick up a present and sit it back down, maybe shake it a little, before we did mostly hand over hand with him to open it.  It's probably a very materialistic thing to say, but it's great to see his eyes light up like other kids when we mention presents!

We planned the presents early enough so that if he became overwhelmed, we could stop and restart after lunch.  He opened his handful of presents over an hour's time...opening one and playing with it a little bit before we moved onto the next.  We've just learned that he can get overwhelmed with even too much of agood thing, so it's better to take it slow and at the pace that keeps him content and engaged.


Brycen enjoyed lining up his new wind-up trains in multiple ways.  Side by side, in a straight line, on the floor, on the couch...over and over and over!




Grandpa and Daddy put together his new train track in his room and that is where he decided to spend the next couple hours!  He wouldn't even come back downstairs to eat lunch!  Of course, we decided to choose our battles and just let him eat in his room.  Since he hasn't been eating much lately and it was his birthday, we wanted to ensure he had a good relaxing day and give him a little more control over the routine. 



After lunch, we had a little downtime (sister needed to take a nap) before moving onto cake.  Spacing the celebration out was definitely good!  He was ready to engage in more interaction at this point and immediately came running.  He had yet to see what his cake looked like (Grandma made and decorated it), so his face lit up and he began flapping away when he saw the train track and a new James train!  He wouldn't even sit still for a picture for a couple minutes since he was so excited.  Once we started singing "Happy Birthday" to him, he couldn't wait until the end to start blowing out the candles.  Just in the last year or so, he has worked so  hard at this through blowing bubbles and was able to blow out all 5 by himself with some verbal prompting from Daddy (and a little spit on the cake).  What a big boy!!!  He had no problems with finishing his piece before heading back in to play with his multiple trains (3 new wind up trains from Grandma & Grandpa Timmer, James from his cake, and his new Polar Express set from Mommy, Daddy, and Aubree).


After a walk, SCL time with Grandma, and some homemade pizza for dinner, we went outside to play with his new soccer net and goal.  He knew exactly what to do!  It wasn't long before he began sweating from all the running, but the smile never left his face.  He was so happy...doing everything he loved and surrounded by people that adore him!  He then enjoyed some more 1:1 time with Mommy & Daddy (sister left for the camper), before taking a bath (working on learning how to wash his own hair and body), having his favorite bedtime snack of popcorn, and then went to bed about 7:45pm.  I'm sure he fell asleep dreaming about his new trains, cake, and soccer!

July Update on Brycen

First of all, Brycen will be turning 5 in ONE WEEK!  That just seems impossible...though so much has happened in 5 years.  While his physical age is moving forward, his developmental age is still lagging far behind.  He's a 1.5-2 yr old in a 5 yr old's body for the most part.

Therapy:  Brycen attends speech and OT three times per week for one hour and 20 minutes.  He LOVES going to therapy!  When I say it's time to go, he rarely fusses and will frequently say "peee" in imitation of "therapy."  He is always so happy when he comes out of his appt too and he's making fabulous progress.  He's already met some of the goals they set for him at the new clinic just in this first month!  He's a very determined little boy when he wants to be and surprises us frequently with new things he can do that we weren't quite expecting yet.  One of his speech goals is to work on 15 core words.  Two of those words are "mom" and "dad."  He has not said either of these in about 3 years.  He will do some imitation noises when we ask him sometimes, but it's not consistent sounds and never spontaneous.  The SLP seems very determined to help him with this as she feels these are important words in any child's vocab.  Since Brycen has begun imitating more sounds in the last few months since receiving his device, we decided to program our pictures into the device so that he is hearing "mom" and "dad" from that instead of us always prompting him.  Crossing our fingers that we will reach a breakthrough soon with this!
School:  Brycen has been meeting with a teacher every Tues and Thursday for an hour for his extended school year hours for the next couple weeks.  He has adjusted well to the new school surroundings and LOVES his teacher.  When I say it's time to go see "Carrie", he is imitating "Cay" and runs to the door.  We are actually looking into Carrie working with him during SCL home services as she is also employed with a local agency.  She will not be his spec ed teacher in the fall, but was able to do his summer hours!
Learning:  We continue to be amazed at how fast Brycen is learning some things!  As I posted before, he just started tracing the letters of his name (and other letters as well), and even did it without tracing with just verbal prompts from me!  He is now able to recognize not just capital letters, but lower case as well.  He can also recognize most of the basic colors and is attempting to verbalize them as well.  He LOVES his device and can navigate it better than all of us!  We recently programmed "yes" and "no" into the device and it's funny how he likes to go to that page and push "no" and just look at us with a silly grin.  Just another thing to show his developmental age of about 1.5 when a child is first learning to say "no" and it's about all they will say!  Brycen can imitate a lot of sounds and has word approximations for a lot...but we continue to battle the fact he needs to be prompted for most of them.  While I have just learned to know what he wants or understand his sounds, it's very hard for anyone outside of our house or his therapists to understand him.  Even Aubree can understand some of his sounds better than another adult can!  We just keep hoping he will make progress in this area as we know how vital communication is in this world and for him to be able to thrive and be more independent.
Sleep: Well, this is going as well as the other things.  Since we moved, he has only slept through the night (8 hours or more) three times...and two of those times was 8 hrs exactly.  He typically goes to bed around 8pm with a "cocktail" of juice, benadryl, and melatonin which helps him fall asleep fast.  He will then wake up anywhere between 1 and 4am for around 2 or so hours.  It's not that he's being naughty during this time, he just is wide awake and is wanting to stim a lot.  Due to safety concerns, we can't leave him alone so one of us is forced to be awake with him.  The part that is also frustrating is that when he wakes up, he runs full speed into my bed, opens the door loudly, therefore waking his sister often.  If she wakes up, then I am forced to wake up Daddy also to help out with her which is not exactly fair to him with working 50 hours a week lately. 
Eating:  We prided ourselves in having a child that would try and eat many things...but we've recently hit a brick wall in this area.  In the last few weeks, Brycen has become quite picky compared to before, though not as picky as some other children of moms that I communicate with on FB.  Luckily, he still likes grapes, bananas, and baby carrots so we can still get some healthy food in him.  He won't even eat his prized PB sandwiches anymore, or cheddar cheese chunks...but if you put chips or cheetos on his plate, they are gone instantly.  We continue to put things on his plate and include at least one thing we know he will like, and when he comes to the table, if he doesn't like how his plate looks, he will push it away or even throw it.  He has gone quite a few times with choosing to not eat anything for supper.  Just this week, we were excited to watch him eat a hot dog and some grilled chicken breast!  As well as a slice of pizza and breadstick at Pizza Hut yesterday!
Behavioral:  Brycen continues to be very aggressive daily.  He is also continuing to stim a lot, including flapping, pacing, jumping up and down, and lining things up.  I try to remember that most of his aggression is probably from not being able to communicate effectively, but it's hard not to react when you see him tackle his little sister and put his hands around her neck or pull her hair.  We do allow them to be in a room together briefly as long as we can hear them and check on them a lot.  Aubree is pretty good at screaming loudly when he has tackled her so we can respond fast!  But Aubree is not so innocent either, as she will sometimes instigate the aggression by touching one of Brycen's trains or something else.  Brycen has also been attempting more running from me lately....such as when we are leaving therapy or at the grocery store.  It is getting to be far too difficult to take him to these types of things and much easier to use the stroller for walks where I can buckle him in and know he can't slip out to run from me. 
Personal Hygiene:  Brycen continues to be infatuated with his male anatomy.  Though he is not "flashing" himself as often in public but that is probably more because I rarely take him places and do most of my errands when he is in therapy.  He is working hard at washing his own body in the bathtub and he seems to have adapted well to taking a bath separately from his sister.  He is even putting his head partially under the water spout when the tub is filling up!  He continues to wear a pull-up during the day and an overnight diaper at night.  Though he does seem to understand that he needs his diaper changed after a BM as he will either lay down on the floor or grab his bottom, he doesn't seem to give any signs before hand.  We continue to encourage him to sit on the potty just to sit and get comfortable, but he is not even close to understanding the process of potty training. 

Hopefully this gives you a little insight into where he is today!  The summer is more than half over and I hope it doesn't sound horrible that I am so looking forward to him being back in school full days again!  He needs that structure and routine, and I just need time to get things done and not have to be following behind him everywhere in the house to ensure he is safe.