Next on the agenda: Creating a Sensory Diet

When I first heard the term "sensory diet," I thought it had to do with feeding your child a variety of textures, colors, smells, etc. But after a few OT appointments under our belt and a little more reading in "The Out-of-Sync Child" book, I have found out what a sensory diet really means...and I COMPLETELY agree that we need to include more of this daily.

In short, it means we need to include a variety of sensory input activities based on Brycen's mood and cravings. Overall, Brycen is hyperactive, so we need to encourage some quiet activities like playing with a tub of rice to encourage a slower activity or having him swing so he is getting that active sensory input he is craving, but is doing it in an orderly and calming way.

The activities will need to vary and be available to change as needed due to his change in moods and sensory needs that go along with sensory processing disorder.

Check out this link I attached that explains this more in depth and all the different areas that a sensory diet includes! It's a lot of information to take in, especially when I know it will need to be addressed daily to ensure his sensory needs are being met...but to combine this with all the therapy appts, another toddler to keep entertained, housework, and the responsibilities of mine and Mike's jobs...Wow, it's definitely going to take some time to get into a routine of incorporating these examples every day as he needs them!

http://sensorysmarts.com/sensory_diet_activities.html

Instead of a link to this "essay", I chose to copy it over to the blog so that it was more accessible to all the readers. The Autism speaks blog is always posting such wonderful essays like this written by parents and others affected by autism...sometimes by children themselves that are on the spectrum. This specific essay should empower all of us to know that it is possible...there can be a "remission" for children with autism...it comes at different times for different children, and may not be possible for all, but like this mother said "Ignorance holds you back, knowledge is power."
Many of you have questioned over the last year either to me or to others when I take the time "to breathe" and I typically answer with all the things that we do as a family, as a couple, by myself...but honestly, what I really want to answer is "I will take time to breathe when my child can talk, communicate, and play just like yours." So, next time you question when I breathe, please remember the difference between my life and yours, between my personality and yours, between my personal experiences and yours...and I can promise you that I know you also have obstacles you are facing, and I will never question you!

In Their Own Words – Autism Remission?
June 28, 2010


This “In Their Own Words” essay was submitted by Orfa De armas of Seattle, Wash. who has a son with autism.


"I breathe autism.
I eat autism.
I drink autism.
I live to fight it and to win the battle.

So why am I so speechless? I should be celebrating today’s news and jumping up and down with joy. Why do I feel so confused when we’ve kicked autism in the butt so early in the game?
Today, May 19, 2010, marks the end for us of two long years of early intervention under the guidance of the University of Washington Autism Center. We moved across the country in 2007 so we could get on a waiting list to obtain an early diagnosis for our son, Frankie, and to learn the next step for this lifelong journey.
Today, we got more than what we had been hoping for; besides a tentative label for his forehead reading: PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified) we also got the news that he was no longer considered autistic, per se. In order to explain this better, we were told that if our kid had cancer, he would now be in remission – so, we needed to watch it, keep it in check, be aware there could be a regression if a big crisis would arise, if stressful situations involving big changes or social challenges ever took place. But for now, it’s all good … it’s all too good.
So, if this analogy is right, does that make Frankie an autism survivor?
Personally, this information creates a big paradigm shift for me. I have spent the past 30 months learning to accept the reality of Frankie’s autism and brainwashing myself to deal with it for life. Ever since we contemplated the possibility that our youngest son had autism, I was scared of the unknown. I made it a point to know. I promised myself that if I knew enough, or in my case, more than enough, I wouldn’t be scared to take on the fight. I’ve always believed that ignorance holds you back and that knowledge is power – so that’s what I did: I learned. Autism became my thing – I learned to listen, I learned to process, I learned to research and I became a pro at it. Name the website of the month, I knew it. Name the event of the week, I knew it. I was informed and on top of it. I gave the early intervention of my child the highest priority in this family. Our lives revolved around the parent training sessions, the intervention schedules, the evaluations – everybody was on board and there was no other way. No long vacations were allowed; we had sessions in the middle of snowstorms, hail and rain – not a minute went to waste. The efforts paid off but the reward was more than we bargained for.
Then, why on Earth am I so shocked at what I heard today?Perhaps I’m shocked because I never really expected to win the battle?Perhaps because now I’m left without a purpose, without a mission?Maybe because at one point this became more about me than about Frankie?Is it because I feel that we belong in the autism community and we will have no identity left once we are out?
I’m not sure of the reasons of why I feel so surprised at what the future holds for Frankie. The truth is that I just wished for him to survive and now I’m told that he can thrive and this is hard to process. I am, once again, scared, but this time I’m scared to take on this new reality and truly enjoy it because it seems so unreal. Could it be really happening? How did it happen? What did we do differently? Why can’t this be the outcome of every family living with autism? What is that magic ingredient we found without knowing?
So many questions are dancing in my head and are making me dizzy but one thing remains very clear to me; the sky is the limit when you reach for it and there is always a light at the end of the tunnel. Our tunnel was shorter than other families’ tunnels but it was indeed a tunnel and it was very dark. But the light at the end is so bright, I might need to wear my shades all day long!"

Protecting Brycen from stress...and dealing with the inevitable change

Brycen's case manager called yesterday to check in on things for this month...and I was so happy to report to her the decrease in Brycen's tantrums and the absence of a meltdown in this entire month! Not only that, but he is now able to drink juice and water from a big boy cup (though we still give him milk in his sippy, otherwise he won't drink much)! He has been imitating more and more words and just seems happier and more content with life.

I'm not sure what we are doing right, but this past month has actually gone very well and I sure hope the next two go even better!

Well, onto the point of this post...if you have ever visited our home, you know that we don't have a lot of pictures on the walls or breakable items sitting around that the kids can grab. While this is quite common in households with babies and toddlers, I am pretty sure our house may always be this way. I was thinking about this when I was ordering pictures from the Autism walk online and I was thinking about getting some 5x7's for frames...and then I wondered where I could possibly put them so they wouldn't be thrown and broken. See, when Brycen has one of his meltdowns, he will grab anything possible, kick anything possible, break anything possible. Many of his toys have been ruined during these times, despite our diligence at trying to keep him and his items safe. We are even more diligent when we visit other people's homes because we don't expect them to "Brycen proof" before we come, therefore we cannot allow Brycen alone for a second in other houses for fear of what he can do.
When one of these meltdowns happen and something goes flying, a picture always enters my head of a past consumer I worked with back in Waterloo that would react to any and all changes in his home. I remember the staff preparing him for days before the housemates received new furniture or before a new picture was put on the wall. I remember one staff (Kenzie) being so aware of his needs that she tried so hard to make a game out of it and actually encouraged him to bounce on the couch to help him accept the change.
Brycen is so similar in this aspect. An example would be our shopping trip to Payless this last Saturday to get Daddy a pair of sandals. Aubree was fascinated by all the shoes and kept picking up one to show me, then sitting it on the floor when she found another shoe she liked. Brycen followed behind her and would pick up the shoe from the floor and ever so delicately put the shoe back where it went, and after a few times of doing this, I could see the frustration in his face when he would see Aubree sit another one down. Like a good big brother, he decided it was best to take matters into his own hands and grab both of Aubree's arms and pull her out of the aisle before she continued to destroy the orderliness of the store (this is what I imagine he was thinking since obviously he couldn't tell me).

I fear the upcoming moves could take a toll on him. While he responded well to the living room furniture being moved a couple months ago, I doubt he would respond the same way to his own bedroom furniture being moved. I know for a fact that I will not have him around when I am finishing the packing or when the movers are here, as I really feel it is better to protect him from this "stress" he would feel when something isn't right. I also know it is best if we get to the new place ahead of him and get his room unpacked before anything else so that he has his peaceful and orderly area again.
While most people probably aren't thinking about these things much, it crosses my mind most days lately knowing we have been in Storm Lake for over 3 years now and a move could be on the horizon at any time.
I thought it was hard the last time when it was just Brycen and I for those 4 weeks while Daddy lived here...what am I going to do when I am single parenting for another 4 weeks this time with both kids, a job that I travel for, therapy, etc with probably only a few days notice of Daddy's absence? I just keep reminding myself that the stress of all of this will be well worth it in the long run!

Oh my! Brycen sure "told" me!

So, I have taken Brycen to Wal-mart with me twice this week and it's the same route we take to get on the highway to head to speech therapy. I've read and heard about children being quite rigid with their parents taking the same exact route home from school, or not being able to drive by a certain eating establishment because the child gets very upset when they don't stop...but until this week, Brycen never really did those things.
He is very rigid in many other aspects of his life: getting out of the car the exact same way, needing certain things with him when getting ready for bed, having a particular order of doing something, etc. Since he loves being in the car so much, I guess I never really thought we would have issues with going certain places...until this week!
Brycen LOVES his speech therapist...he will hug her and pull on her until she is ready to take him to the other room...he never allows me to actually talk with her before the session because he is so excited knowing they are going to be having a 1/2 hr of fun focused entirely on him! So when we drove to Wal-mart once earlier this week and then again this morning, I never expected to hear his protest when I pulled in the parking lot! Earlier this week, he just did some gesturing, grunting, and a little screaming, but it ended as soon as I parked the car. This morning was a whole different story...he was kicking the seat in front of him, hitting the window beside him, trying to unbuckle himself, screaming to the point of tears...all because I pulled in the Wal-mart parking lot instead of continuing down the road to the highway that goes to speech therapy. WOW is about all I could think and just stared at him in shock of this outburst! Is this how I felt the first time he had a meltdown that lasted 45 minutes? So much has happened over the last year or so that I can't even remember his first meltdown and how I felt...was I in complete shock that a tantrum could turn into 45 minutes of a struggle, aggression, stress that could not be stopped or even understood by either me or him?
Lucky for me, as soon as I opened his door to get him out he calmed down and the entire thing was forgotten...is it because I promised him a new box of diapers?!!! Wasn't that nice of me?! Or was it because he realized he wasn't getting his way...or because he loves Wal-mart (someday he will learn differently!). Whatever the reason, thank you, Brycen, for calming down! That actually set the stage for a fast and easy shopping trip (yes for diapers)!

Shopping with Brycen

This is probably a very misleading title as I am guessing most of you thought I was going to tell you how hard it is to shop with him...and though some of the parts of shopping can be hard with him just like with any child (waiting in line to pay), Brycen can actually be quite pleasant while at the store when it is just he and I.
So, we ventured out to Wal-mart last night to get a few small things. He definitely didn't appreciate the few minutes by the greeting cards and decided to plop down on the floor and start crawling away from me. I chose not to use a cart since it is just the two of us and he needs to eventually learn that wandering away is not ok (in the cart, he actually sits very well in the front basket the entire time!). So after we find our items, I allow him to look at the toy aisles if he has been good and if we have time.
I absolutely love the look on his face when he spots the part of the section with his favorite...Thomas the train! He flaps, jumps up and down, and smiles the entire time while he scrutinizes each package that is at eye level and below. He never even touches unless we show him that you can push a button for a noise or something.
The good thing about all of this...he doesn't even understand that these toys can be bought...so while other children his age are crying in the aisles when they want something and their parents don't buy it, he just continues his flapping and joyful smile (sometimes a little giggle if a toy makes a noise). So, his lack of understanding in this situation is definitely a blessing in disguise for us!

Team Brycen 2010

Sunny, warm day...fabulous family & friends...hundreds of people there for one cause...knowing your child is attending a community event where not a single person will judge him or anyone else...all the various colored shirts, ages of walkers, all demonstrating each of these children are unique and affected in different ways...knowing that we are not and never will be alone fighting this...

This summarizes one of the most special days in our lives...along with our wedding day and the day that each of our children were born!

We had been wondering how Brycen would handle such a large event with so many people and the loud music...he demonstrated to us with the right understanding of how he is feeling, he can fight those feelings of being overwhelmed...Mike, Mallory, and myself took turns holding him and we were amazed at how this kept him so calm. One picture above was of him holding tight to Mallory, and the other below is of him cuddling close to Daddy (taken by Uncle John). Thank you to everybody that was there and understood how he was feeling and just let him work through it! One thing we have learned is to adapt to how he is able to handle the stress and today was a day he chose to stay calm. Deep down I really think he knew all of these people were there for him and that was what helped him to handle his stress in a good way.

Our fundraising as of today totals $3565...we started with a goal of $2000 for our first year...we not only exceeded that goal, but we almost doubled it!!! Donations were made by not only our family and close friends, but from co-workers from current jobs, old high school and college classmates, friends & family of the other walkers on the team, co-workers from previous jobs...all amazing people that found it in their heart to donate to a wonderful cause affecting so many families in Iowa, the country, and across the world. "Thank you" just doesn't seem like enough to express our gratitude to all of you! We will continue to have a Team Brycen every single year, so your continued donations or dedication to walk every year WILL make a difference...THANK YOU!

Starting a new list...and topping it off with a NEW WORD!

Speech therapy got off to a rough start today...but thankfully, Brycen adores his therapist and she is so aware of his needs, that her fast reaction and thinking prevented a huge meltdown. Thank you, Laura! You may never know the way you prevented my blood pressure from rising along with his. It's every parent's goal in life to prevent their child from any harm, and unfortunately there are unforeseen obstacles like fire alarms that we cannot prevent, but it requires a lot to keep things under control.

Anyway, despite this rough start, Brycen had a fabulous therapy session...that concluded with him saying his word approximation for "kick" in a way that I consider sponanteously!!! Laura would stand by the ball, with her leg back and would ask "what do you want me to do?" and he responded with "ki"! Before this any words needed some kind of prompt like, "do you want MORE?" to get him to sign or say "mo." This is the only time I can think of that the word we were encouraging him to say was not used in the question to him...so I consider that SPONTANEOUS!

When he first started speech therapy with AEA almost two years ago, we had a list of all of his words and phrases, and if they were word approximations, spontaneous, or prompted. I did away with that list as he continued to regress down to one word "ball." The school was keeping track of his prompted words and that was exciting to see when he reached 20 several months ago, but again I quit keeping track as he then leveled off and was not saying anything more.

I think it is time to start that list again...and to watch as he progresses not only in person, but on paper really makes it real!

Yay for speech therapy and for over 4 hard weeks of starting a new routine and for all the progress that is already coming!

Occupational Therapy: A whole different world for us

I, of course, have heard about occupational therapy for many, many years in my field of work, but until yesterday and since I started reading "The Out-of-Sync Child", I just never knew how much OT's actually work on and how much these things can affect a child.
I listened with awe yesterday to the questions and comments from the Occupational therapist that evaluated Brycen and will be working with him. While most people think of fine motor skills and learning to adapt to the world around them when someone mentions OT, I learned there is so much more to this.
If you have watched Brycen eat, he drools almost at every meal and snack. Did you know that could mean his oral motor muscles are not developed enough and need work to become stronger?
Brycen has always had an issue with choking on food and gagging. She said the reason he may only chew his food a little bit is because his muscles in chin and mouth get tired of chewing so he just swallows, hence the choking. Most people can leave their almost 4 yr old child while eating and go to another room, but we can't do this for fear of this exact reason.
While Brycen seems to be on track with fine motor skills, they will be testing his grasp and the way he uses utensils, etc to see if that needs any help.
They are also looking at the reasons Brycen chooses to eat the foods he does and refuses others, whether it is color, texture, temperature, etc. So now I am keeping a food log for the next few days with what he is given, how much he eats, etc. This will also be helpful for nutritional purposes as Brycen is very low on the percentage of his weight compared to his height and head size.
I am very grateful for their help in these next areas of loud noises, teeth grinding, and oversensitive to various touch such as during a haircut or during brushing teeth. She said they are going to work on desensitizing the areas first with different techniques. With the teeth grinding, we are going to try to replace this with another sensory seeking item. We have noticed he doesn't grind when he is doing a lot of jumping, running, or at the park climbing, but he will frequently grind during meal times or when he seems "bored" and "stimming." So obviously, he is not seeking some kind of oral sensory, but needs something else to "distract" him. I hope that makes sense!
So, I knew Brycen had some sensory issues, but I guess I never realized how much there is to work on in addition to his speech and communication, appropriate play and socialization, sleep issues, aggression, and many more. The list of things we work on every day just keeps growing and I am learning so much about why he does the things he does and what we can do to help him in these areas.
We are now tacking on two OT appts per week in addition to our 3 speech...luckily they will be back-to-back appts so we don't have to drive there more than 3 times per week...but it's just exhausting thinking about it!

Time to Reflect

With the Autism walk coming up this weekend, I began to do some thinking. We have been truly blessed with the support, love, and generosity that we have received since Brycen's diagnoses. The list would be too long so I wouldn't dare thank everyone in this blog but do know that we are truly grateful to each and everyone one of you.
We have also learned alot, not just about Autism, but who are truly friends and who is truly family. It is so easy to be supportive during the "good" times but it is crucial to be supportive during the "bad" times. The "bad" times should help bring families and friends together, stengthen the relationships, not tear it apart. Helping ones that need it is not only the Christian thing to do but is the right thing to do.
One goal of mine is to ensure Brycen is surrounded by those that love and care for him. I can honestly say that I do not want anyone around him who doesn't want to accept Brycen, learn about Autism, and don't attempt to reach out to help or even show that they care .
The sad part about everything is, what did Brycen do? He is happy, adorable, full of love and energy, Autism is a part of him but it is not who he is. The one's that truly know Brycen instantly want to be apart of his life. To know Brycen is to love Brycen, it is heart breaking that not everyone can see that.
Not to get to lenghty but I am a very lucky man, I have a wife who I love dearly, my kids are my world, and Autism is in our life but it doesn't control it, our love does. Again thanks to evryone, we have needed you, and hopefully when you look at Brycen you get that warm fuzzy feeling like we do.
See you at the walk or very soon!!!

Thank you for the donations!

Another big THANK YOU to all those who donated to the walk! When we set out to form this team and set our donation goals, we chose $2000 as we didn't want to set the bar too high, though we wanted to challenge ourselves for a very important cause. As of today, from what has already been added to our team page and from what I know is in the mail, we are well over our $2000 goal and are actually very close to reaching $3000. How amazing is that for the first year of Team Brycen?!

Another thing that Mike and I discussed is that we wanted to challenge ourselves to donate as much, if not more than the top amount donated by one person...we had three very, very, very generous donations from the following people that set the bar high for us to save this amount:
Patrick & Erin O'Connell (my little brother and his wife)
Janet & Mike Blad (my aunt/godmother and uncle)
Teri & Gary Roushkolb (my brother in law's parents who have only met Brycen a couple times)

Thank you to all 3 of these couples, as well as every other person that found it in their heart (and checkbook) to donate to Autism Speaks! As many of you may have read, a recent breakthrough was made in the area of genetics to help pinpoint what children are more likely to have Autism...Autism Speaks had a big part of funding this research project! Your donations will continue to help research incredible things like this so that one day there can be a cure for Autism!

Walk Now for Autism: Learn about the walkers

I wanted to give credit to those friends and family that are giving up a Saturday to support Brycen and all others affected by Autism by walking this Saturday in the Iowa Walk Now for Autism Speaks!
Below are the walkers and how they know/are related to Brycen:

Me, Mike, & Aubree- if you don't know who we are, you might want to read the info on the side of the blog!
Kyle & Katie Baker- Kyle works with Mike at Fareway in Storm Lake since we moved here three years ago. Katie is Kyle's wife! Their generosity to take time off from work and drive down to Des Moines for the walk is amazing!
Mallory Hinkeldey- Mallory has been babysitting for us since shortly after Aubree was born. She has been there through Brycen's regression, and is the most mature babysitter we have ever had! She is dependable, loves our children, and even created a presentation about Autism for a class at school! We trust her with our kids...and that says a lot considering there are very few people in this world that we can walk out that door and know that our children are in the best hands!
Dan & Shirley O'Connell- These are my parents that live back in Evansdale. Despite being 3 hours away, they drop everything to help us out with the kids knowing our dilemna with daycare and our job duties. My mom is our only respite provider for Brycen, as just like Mallory, she is one I know we can count on for a break overnight or even for just a few hours when they are here or we are back in Evansdale. My dad retired last year, so we make sure to give him plenty of jobs (like fixing the hose, snowblowing, etc) when he is here to make him feel like he is still employed...and he NEVER complains about helping us out!
Lori Reynolds- Lori is a dear friend of mine since I was born (that's 30 years people). Our parents/families have always been close and though Lori and I lost touch for a few years, we have since been back on track. We share everything about our children and she is the one I know I can call/email with anything and know she will NEVER judge me for what I say or complain about! Here's to another 30 years of a great friendship!
Brenda & John Roushkolb- Brenda is my older sister and her husband is John. They live in Kansas City, and Brenda is great about making sure to travel to see the kids about twice a year. I know if I ever needed anything, she would drop everything to get here! Just like Lori, I know I can call her to vent about something...and she is the godmother of both Brycen and Aubree, so I think that speaks for itself!
Brent, Megan, Taylor, & Sawyer Sanders- Megan worked with me at EPI in Waterloo for about 9 months before we both moved away the same month; she to Des Moines to be closer to family, and our family to SL for Mike's job. We have stayed in touch for the last three years and have children very close in age! Megan and I now work together at the agency in Urbandale (she pretty much got me the job). I can count on Megan and Brent for anything! They both work with children/adults with disabilities and though our schedules don't allow for our families to get together, I would trust them in a heartbeat with Brycen! They are the ones that didn't hesitate to let us use their home and yard for the grill out following the walk, as well as housing the 4 of us on Friday night. They make me feel so comfortable when I stay at their house and I have loved seeing both Taylor and Sawyer get so big!
Ann Spaine- Ann works with Megan and I. Though I don't know her very well (yet!), her support of wanting to walk for Brycen's team is fabulous! Ann is the sweetest, least judgemental person I have met through my job and I appreciate her and her daughter giving up family time on a Saturday to join us!
Craig Timmer- Craig is Mike's older brother, as well as our nieces, Samantha & Emma are walking. Craig does a great job of interacting with Brycen and asks so many good questions about Autism and how it affects us. Samantha and Emma are going to be the best babysitters some day and we love when we can see them when we go back home! They are very sensitive to Brycen's needs which we appreciate, especially with how young they are!
Mark & Carol Timmer- These are Mike's parents and they live in Vinton, so they also have over a 3 hr drive to come and visit us. Aubree and Brycen love their grandma & grandpa as they will take them on walks and read books with them non-stop when they visit. Mark & Carol have been very supportive through this entire last year and have also come to help us out with the kids when we both need to work. We appreciate any time we can spend with them! Since Mark is a retired Fareway manager, he and Mike always have things to talk about and I know that Mark and Carol will always be very supportive and understanding of the many moves we will have to make over the years since they went through the same thing before and after Mike was born.
Heather Wheeler- Heather and I worked together at EPI many years ago! Heather has two little girls, Hannah & Hailey, that will be walking/riding along with us at the walk. Heather now lives in Waukee with her husband and the girls and we lost touch for many years after we both left Waterloo...and recently found each other through Facebook! I am so excited to see her again as so much of our lives have changed since we last visited...and words are not enough to thank her for her amazing support for Brycen (someone she has never even met)!

So, there they are! Our wonderful group of walkers for Saturday that are fully supportive of Brycen and this disorder that affects so many people around us. These walkers have raised over $2700 at this point, with another almost $200 in transit to the Autism Speaks office in California. We are forever grateful to all of those who are walking and who donated to this wonderful cause...many of them who do not even know Brycen! With Brycen's diagnosis and the ups and downs we have encountered over this last year, we have realized who our family and friends really are and truly can never put into words how much they all mean to us!
THANK YOU, THANK YOU, THANK YOU!!!

When and Where

The disadvantage of my job is not knowing when or where the next move is or will be. With Brycen's response to change, that could make a move very difficult. Moving means more money and more money can greatly benefit Brycen. It is almost a double edge sword, move and create havic or live check to check and depend on goverment support for everything. The answer, yet not easy, would be move no matter what because the money is needed if we want to keep Brycen making progress.
I am fortunate to have a job where they think family first, and they are looking to make a move for me that benefits my family. The best thing about my job is the understanding between a happy home and a happy work place. Family is the most important to them and they consider an employee family. I have only worked for the company a short time (unless you factor in growing up with it in my blood) but I will be forever grateful for those decisions that they make.
The hardest thing is having your hopes up about an opening and then being let down. What I deam as the perfect place to move for me and my family must be different for them. I have to keep telling myself they truly have my best interest at heart. The longer we stay in one place I almost feel like I'm letting my family down because it is taking so long. With Brycen time is not on our side, the brain is developing now and if we can't keep giving him everything he needs, later might be too late. I would love to "push" the issue but I'm afraid of how that might hurt my future.
If only we had a crystal ball and it could tell my family when and where, maybe for Brycen's sake, just this once let us know.

Our "out-of-sync" child...sensory issues

It doesn't take a rocket scientist to see that Brycen has many sensory issues. While Sensory Processing Disorder is separate from Autistic Disorder, most children on the spectrum have some types of sensory issues that fall under Sensory Processing Disorder. These two can go hand-in-hand, or one can be seen without the other.
I bought "The Out-of-Sync Child" book a couple months ago and have decided it is time to start educating myself on these sensory issues that Brycen is facing. This is one area that I really don't have much experience and will need to rely entirely on the Occuptional Therapist for guidance. His sensory issues have increased over the last year, and have been very noticeable the last few weeks. We all have sensory issues, but when it starts to affect your daily life and interfere with growth in other areas, then it becomes a whole other obstacle...which is where we are with Brycen right now.
His SLP spoke with me after his speech therapy this morning and said that his grinding is getting worse, which we completely agree with. She noticed when she had him in the swing, he wasn't doing it, but as soon as they transitioned out of the swing, he began grinding. She gave him a chewable toy, but he had no interest in that (just like he doesn't have interest in his chewable Thomas toys at home anymore...unless he is lining them up). So, she attempted to replace the sensory mouth issue with some other sensory input by giving him rubbery balls to play with. She said this helped out a little. The balls they use are actually chew toys for dogs, and that probably sounds crazy to some people, but they are very durable and have both the texture and smoothness that most children with sensory issues crave. The use of these will encourage him to squeeze them in his hand or rub them up and down his arms/legs to gain similar sensory input without the damage to his teeth.
This "talk" led me to call the doctor for yet another order to be faxed for therapy and we now have an Occupational Therapy assessment scheduled for next Wednesday after his speech therapy.
While beginning to read this book, I have found some definite sensory issues Brycen has in the following areas: "overresponsive" to sights, sounds, and tastes, as well as "sensory-seeking" to touch, movement/balance, and body position/muscle control. I'm curious if my understanding of this and from identifying these areas of concern for Brycen are similar to what the assessment will show next week.

Been one of those days...

It's really been a typical Saturday. Brycen and I ran a couple errands this morning before Mike went to work. He waited patiently in line at both the post office and Fareway (which should actually translate to a FABULOUS day!), would say "bye" to the lady at post office, but refused to say "bye" to the cashier at Fareway whom he sees quite often (unless you count "ahhhh" as saying "bye). He lined up toys most of the morning, shuffled them around a bit, looked at a train book from the library with Daddy before he left for work (which was eventually taken away due to throwing it around), sat on his sister a few times, laughed uncontrollably for some reason I will never know, jumped up and down while flapping his arms while watching a video, and ran back and forth from kitchen to couch for about 10 minutes straight. All before lunch time at 11:20!

Just a typical day in Brycen's active world. He hasn't been extremely aggressive or stimming a lot. He actually fell asleep at nap time, so I had about 45 minutes of peace and quiet which is rare with him home. He even said word approximations for both "Mama" and "Dada" this morning when prompted (we worked on this a lot last night and had to show off to Daddy; note they were prompted MANY times and Mama sounds more like "baba", but it's progress)!

So, why am I having one of "those days" where I am sad and I look at him with tears in my eyes, wondering "why"?! I am never going to understand this whole grieving thing! Just when it seems like acceptance is around the corner, I get depressed and anxious, wondering about the answers to those gazillion questions I have: how did this happen to him, did I do something wrong, what does the future hold, will he learn to communicate effectively, can I protect him from those people who don't understand him, will he have a best friend some day to share secrets with, what will happen when I am no longer here to fight for him and care for him, etc.

So I decided to turn to the Internet for some uplifting stories, research, pretty much anything to remind me of how good I have it and how much hope there is for children like Brycen. I ended up on YouTube, watching videos of Autism Awareness and parent's stories of "recovery" (I say that loosely, not because I don't believe it CAN happen, but I think most parents of a child with Autism will not fully believe this until it happens to them).

I found this fabulous music video of Mark Leland performing his song about Autism called "Missing Pieces." I know I have heard it before, but I think after hearing this song and actually LISTENING to the words...words cannot express how it made me feel! Not saying it was a good feeling or a bad feeling...but it just made me FEEL! I know it's about 5 minutes long and you may think you don't have the time to watch/listen to it, but PLEASE DO...Do it for Brycen and for hope for all those other children out there like Brycen!

http://www.youtube.com/watch?v=Mm8XRp1VgT4&feature=related