Kids+Mommy+2 Books= 15 Amazing Minutes

It's been a long time since I was able to read a book with both kids at the same time!  Brycen is pretty sporadic in when he wants to sit long enough for a book...and he definitely doesn't have the patience or excitement for the ones that Aubree chooses.  But both kids came home from school with a project to read 10 books with us for "Read Across America" celebrating Dr. Seuss's birthday over the next week.  I decided instead of focusing so much on writing for Brycen's work at home this week, we would focus on sitting long enough for books and having him participate in some of the simple words either verbally (his approximations/sounds) or with his device  For Aubree, this isn't an issue as she would love if we had time to read her books all day long!!

I decided the best time to try this was before getting ready for bed.  That way I could use the incentive of having ice cream for bedtime snack if Brycen would actually sit and listen to the books.  I had Aubree choose "Brown Bear" and "A trip to the Zoo" since I knew that Brycen knows all of the first, and many of the words in the second one since it's based on beginner reading skills.  I also decided to just go with his verbal word approximations instead of the device to see how much he really could read.  Really, the only way to judge this is to listen for at least one of the sounds in the word since he rarely puts more than that together verbally for a word.

Brycen actually sitting for a picture with the books we read!!

I was in AWE of him!  Of course getting him to sit was the hardest part, so I had to wrap my legs around him while sitting on the floor with him, and put pressure on the tops of his legs.  Aubree and he took turns "reading" each page of "Brown Bear."  He did GREAT!!  Of course most of that is memorization, but I could clearly hear "see", "you", and "me"!  During "A trip to the Zoo" he loved every time the word "zoo" came up as that is one he loves to attempt to say and spell on his own.  He also pointed out and attempted to say other words like "mom", "baby", "so", "to", "look", and "no."  He needed quite a few reminders to pay attention to the books, some physical prompting to sit up straight, and hand-over-hand to use his finger to point at some of the words, but he did so much better than I ever anticipated.  He loves verbal praise and hugs from us when he does something right!

Enjoying their ice cream after reading and putting on pajamas!

It was an AMAZING 15 minutes!  It was exactly what I dreamed about when we were married and starting a family...enjoying a book or something else with my kids sitting by me and happy as can be! 

Autism Does Not Mean Giving In

Through my networks of friends that also have a child with Autism, I have heard many times that others think we just give in to our child's behavior.  We don't push them enough or we let them get away with certain things.  I can guarantee the majority of parents in my main network are not this way.  Of course we choose our battles just like any other parent, and you may not agree with which battles we choose not to fight, but we probably don't agree with the battles you are choosing either.  For example, Brycen has recently decided he will not eat at the table (or very rarely will) for meals.  After stressing about it for a few days, we decided it was more important for him to eat than it was to worry about where he was eating.  He's 40lbs soaking wet...and 5 1/2 years old...he NEEDS to eat all he can!  Therefore, we choose not to battle over this with him, so most meals at home are eaten on the floor of his choice.  Sometimes he chooses the dining room floor, other times the living room, sometimes the floor in his room, sometimes the bedroom downstairs.  And you know what???  He then eats and we don't hear anymore out of him the rest of the meal. 

So, today Brycen was having some real issues at school.  Of course we try to determine what is different in life that could be causing this.  Is it because Daddy was gone all weekend with Papa in the hospital...or is it the sniffles and stuffy nose Brycen is experiencing...or yet the fact he has woken up the last couple nights for a couple hours (though this is usual)...or could it be the change in schedule at school for Valentine's parties?  Wouldn't it be nice if he could just TELL us why he was so upset and why he was refusing to do his work at school?

He is smart.  We all know that he is keeping up with most of what other kindergartners are doing right now within his communication limitations.  So the fact that he had a worksheet to do to fill in the missing numbers up to 100 is something he is more than capable of doing.  He was given tools to do it (chart, his "talker", teacher nearby) but he just didn't want to do it and had attitude about it just like a typical 5 yr old testing his boundaries.  When I witnessed this attitude at school last week, I came home with intentions of forcing him to do more learning activities at home.  Before this, we focused mostly on communication, socializing activities, or just giving him some downtime.  Now, we are going to make him "journal" every day in a notebook, and tonight his "homework" was going to be finishing the worksheet that he was refusing to do at school as agreed upon with his teacher.  Well, when Brycen came home, a note was in his backpack saying he finally completed it before the end of the day...but I was NOT happy with him, so he was still going to have "homework" to do before he began doing fun stuff/downtime.

This is where I think many parents think we just give in to our children...or maybe just parents in general give in to their children when they don't want to do something.  Well, I'm NOT one of those parents.  I want him to succeed in school.  Learning/education is #1 in our book as it should be for all children before extracurricular activities come into the picture.  If your child cannot succeed in the educational environment, then I personally don't believe they should get the privilege to attempt success elsewhere. 

So, after dinner, Brycen brought his Cars lego set to me to do.  No way, Brycen!  You need to "journal" first and do more numbers before you get to play.  He was NOT happy!  He cried, he threw the pencil and paper, and hit me.  "First work, then car" had no affect on him at this time.  Yes I knew he had a bad day, yes I know he has a cold, yes I know his routine is off with Daddy leaving again to go see Papa and Grandma, but there are just some things in life that you don't have a choice about and learning is it in this house.  This was at 5pm.  After 10 minutes of not calming down, I sent him to his bed.  He laid up there, threw his blankets around, kicked the floor, screamed...so what?  I checked to make sure he was safe, told him that I was not happy with him, and once again said "First work, then car."  A few minutes later, he came downstairs a little calmer and once again wanted me to give him the Cars legos.  He agreed to sit down and journaled "car...bold" (car...build) with my help to sound out the letters and his device.

But he refused to write his numbers...and all I was asking was 1-10 so it would take him only a minute.  He wasn't having it and started throwing again, pushing, screaming...and I sent him to his bed again.  He came back down about 15 minutes later and seemed to forget about it and began pacing around the house.  I asked him to pick up a couple things for me and then asked him if he was ready to do his "work."  He yelled and threw again and then proceeded to lay in our bed kicking and occasionally screaming.  He was safe and that's all that mattered.

6:45pm...almost 2 hours after the entire ordeal started...and he walked over to the table.  He threw the pencil once, then when I handed it to him, he proceeded to continue with his numbers.  He even went past 10 and all the way to 20. 

So he earned his lego set back...and he proudly put it together with only a little help (and his sister's watchful eye)!

I did NOT give in!  He is smart enough to know I am serious...and just because he has Autism doesn't mean he gets away with stuff.  I want him to understand that life is not getting everything we want and people giving in to us...we must work at what we want...and he is more than capable of understanding this just like you and me!

“A goal without a plan is just a wish.”

“A goal without a plan is just a wish.”

Larry Elder Obviously Brycen is making progress across the board because we have changed his goals recently for Occupational Therapy and Speech Therapy at the clinic, as well as Speech Therapy at school.  Occupational Therapy is mostly working on fine-tuning the skills he has...such as completing the entire act of zipping his coat (pretty much done), as well as building strength in his arms throwing overhand, working on decreasing the size of his writing skills (can write all letters and numbers, but size is quite large and all over the place), and then learning how to write his phone number and address (he can already find the info on his device, but we want him to know how to communicate it without his device).  In both Speech therapies, we are focusing on more functional communication and using his device to form phrases (stringing at least 2 buttons together) and to make more than just requests.  After discussing this with multiple team members this week, I came home yesterday mentally exhausted on how to start all of this.  It seems easy, right?!  Just program a bunch of words in a page on the device?!  Well, to be honest, it's so much harder than that.  I thought I knew not to take spoken language for granted a couple years ago...but I'm starting to REALLY see not to take it for granted as we progress along with his usage of the AAC device, but not progress along much with his spoken language skills.  Programming basic words in the device is easy...it's categorizing them into pages that he will understand (verbs, nouns, adjectives), and keeping up with what typical 5 yr olds comment or discuss with the people around them on a daily basis, while also not overwhelming him with the entire process.  Using an AAC device just isn't "natural" like spoken language is to the majority of people...there is a learning curve that goes much deeper than the curve associated with spoken language. I spent this morning googling a bunch of websites about "core language"...and was lucky to stumble upon an awesome site that actually focuses on the stages of language and how to keep adding on to each stage as he learns!  Very excited to research this more and get started on this new "stage" of Brycen's development with his AAC device! http://www.aaclanguagelab.com/ So like the quote above says...we can't set a goal without a plan on how to achieve this goal, otherwise it's just a wish of what we want for him!  It's about our action and motivation to achieve these goals WITH him!

Brycen's New Compression-Weighted Vest

A few weeks ago, one of the Occupational Therapists (thank you, Gia!) at the clinic began researching a compression-weighted vest for Brycen, feeling that it could benefit Brycen in many ways.  She presented me with some print-outs on reasonably priced vests she found and one was made by Fun and Function.  Later that day, I reached out to my online support group of other ASD parents and one of them (thank you, Lisa!!) found that the Fun and Function facebook page was doing a giveaway for a gift certificate at that time...and the amount of the certificate would cover almost the entire cost of the vest!  So, of course Mike and I entered the giveaway by following the directions on their wall...and we asked many of our FB friends to do the same in hopes that if one of them won, they would donate the gift certificate to Brycen.  We were so humbled by how many of our friends and family took the time to do this for Brycen...and not only did they enter, many actually posted to their own walls asking their friends to do the same!  Within a few hours, I saw posts from people I didn't even know flooding the Fun and Function facebook page in support of Brycen and his need for a compression-weighted vest! 

A few days after the giveaway was over, I received a text from a friend while I was grocery shopping (thank you, Jennifer!) telling me to get on Facebook and that I would be so excited.  After returning home and logging in, I found that we did not win the giveaway...BUT Fun and Function wanted to donate a vest to Brycen anyway in response to all of the traffic we sent to their FB page!!!  You can imagine the tears of joy that I had...the smiles that didn't stop...the immediate overwhelming feeling of gratitude for a company that did not know us but was so generous in contributing to Brycen's therapy needs! 

www.funandfunction.com

Less than a week later, the vest we chose was delivered!  We knew getting Brycen to just wear the vest would initially be a challenge.  Change is not easy for him...and of course the vest doesn't exactly look like his other clothing items.  Luckily, Brycen has some of the most wonderful people surrounding and cheering him on through every battle!  One of those fabulous people is his Speech and Language Pathologist at the clinic (thank you, Bridget!!).  Every single session, she devoted time to encouraging him to wear the vest...in addition to some of his other therapists at the clinic.  10 days later, she and Brycen conquered it!!!  She brought him out of the therapy room to "show off" for all the clinic employees...and he actually was smiling and seeming to love the feel of it.  He continued to wear it (loose, not compressed the first day) through the rest of his therapy, during some of his SCL time with Cari, and then at home before he got ready for bed.  We were ecstatic!!  But of course, looming in the back of my head was if we would have a hurdle this morning when getting dressed.  I laid out his vest next to his shirt and pants on the floor...and he surprised me with actually reaching for the vest with a smile!!  He even stood still (well, as still as Brycen can get!) so I could fully compress it around him!  He continued to wear it to Physical Therapy this morning and then onto school where he is at this moment.  Today we are just working on the compression part, but we will slowly add in some weights over the weekend for certain times so as not to push it or scare him away from it.

Now, many of you are probably wondering what exactly a compression-weighted vest is and how it can benefit Brycen!  Brycen experiences many sensory issues like so many children/adults with Autism.  Specifically it is called Sensory Processing Disorder.  Many people have SPD without having Autism.  One example I can think of is how some people don't like the feeling of tags in their shirts and they just can't concentrate with them rubbing against their skin...only SPD is more extreme and entails so many areas of all the senses.  With SPD, Brycen has a hard time regulating his behavior because of how overstimulated he can get whether it is from touch, smell, taste, noise level, etc.  His body can't process all of that sensory input...therefore he acts in certain ways to try to work through it on his own.  One of the examples for Brycen is "stimming"...specifically he will hum, flap his arms/hands, jump up and down, pace, etc.  Not that stimming is all bad as he stims when he is happy as well, but it's not a very healthy way to work through sensory overload so we want to give him other tools to work through it and regulate his body. 

The compression-weighted vest is two parts.  The compression part is like giving his core a deep hug which we have found Brycen responds favorably to when upset and can be worn all day long.  The weighted part is like helping him to reset and calm down and is only meant to use the weights added in the "pockets" for 20-30 minutes every couple hours.  I have attached a couple links that can explain this better below.  Our goal with using this sensory therapy with Brycen is to help with his concentration/attention span when needing to do "work" at school or other necessary daily living skills.  We also want to decrease his "stimming" as sometimes he will flap so hard he scratches his skin and causes bleeding.  We would also like to see a decrease in aggression though studies have not shown this yet with using the vest...it's just more of a goal we have with everything we do with him!  We are looking towards using the weighted portion of the vest before stressful events like doctor's and dentist's appointments, when going to a new community place that may be overstimulating, and hopefully before haircuts so they aren't so traumatic for all of us.  We will keep everybody updated on his progress with the vest through the blog!

Once again, this would not have been possible yet if it wasn't for the amazing generosity of Fun and Function!  If you are looking for various therapy tools, please check out their website at www.funandfunction.com and let's please return the support to them that they provided to us!!  They are affordable and have some awesome customer service!

http://funandfunction.com/?p=339
http://tips4specialkids.com/2011/09/27/compression-weighted-vests-for-deep-pressure/