Do you miss pictures?

Well so do I!! A few weeks ago I managed to TOTALLY and fully wipe off my entire hard-drive. Dallas had to reinstall EVERYTHING and then it totally crashed like 2 days later. I have just left it sitting on his desk after I pretty much crashed it and haven't even tried to log in. I have lost all of my photos. ALL OF THEM. I lost all the photos of other people to but I did manage to take off a bunch of peoples BEFORE that.

Any rate, I get to use the macbook of D's and it has NOTHING on it. No iphoto, no blogs, no nothing. It's like a fresh clean slate that I can make a mess of and ruin. But it also means I have no lightroom and no way to download photos without take my lazy bum downstairs. In turn I haven't really gotten my camera out and use my iphone a lot so D can get pictures of our adventures. No blog photos either. ( maybe if Nicky took some she would either post them on HER blog or send them to me.)

But since we are full of unicorns and glitter I will just have to make do with witty words and fancy pants blogging stories.

Here is the unicorns and glitter story for the night.

Ty says prayers a lot in this house. We have always had to help him. The last few weeks he hasn't needed much help. Today, was a no help prayer day.

The dinner prayer went like this.

t: dear hedenly fader fhank you for da day. Fhank you for the food. Fahnk you for handy manny big construction job. pwease bwess the food. To grow big and strong, bwess the tywer for making it and da mom-e. in da name of Sheeshs ( jesus) cwrist Amen.

The fixed version: Dear Heavenly Father, Thank you for the day. Thank you for the food. Thank you for handy manny construction job. Please bless the food so we can grow big and strong. Bless Tyler for making it and the mommy. In the name of Jesus Christ AMEN.

Then the night time prayer.

T: dear Hedenly Fader. Fhank you for da day. Fhank you for Mickey Mouse. Fwank you for the dadd-e, fhwank you for the mom-e. fhank you for the baby. Pwease bwess the baby that it will grow big and strong. Pwease bwess the Tywer that he can cheach da baby how to pway soon. We ashk vees fwhings in the name of sheeshas Christ Amen.

The fixed version: Dear Heavenly Father. Thank you for the day. Thank you for Mickey Mouse. thank you for the daddy. Thank you for the mommy. Thank you for the baby. Please bless the baby that it will grow big and strong. Please bless the Tyler that he can TEACH the baby how to play soon. We ask these things in the name of Jesus Christ Amen.

A huge smile spread across his face cause he can do it all by himself. We kissed him and he told us goodnight and THANK GOODNESS we have heard not even a peep tonight.

Our adventures with Grandma and Grandpa will continue tomorrow.

Tyler says the cutest stuff

This whole speech thing is AWESOME. I can't even begin to tell you how much easier this whole parenting a preschooler is when you have yourself some speech. Seriously, if I would have know I would have made him talk a heck of a lot sooner.

There are things that never get old. I don't think hearing him say momm-e gets old or I love you dad-e. But lately he has been saying and doing the funniest things. Here are a few for your laughing pleasure.

(Please use the potty before. We are NOT responsible for incontinence.)

At Thanksgiving he was telling my Aunt Linda about the pizza story. He gets this pucker on his face and lowers his voice and says " Once upon a time....." Then laughs at himself when everyone else starts laughing.

( the pictures is of him playing at the mall yesterday! he is so stinking cute!~)

He points to his Aunt Nicky and says " Nicky poo poo" Repeats until we can get him to do something else. Like tell us a story.

"Wexi to play baketball" is a big one. He says it like 900 times a day. When I say we have to ask her mom he hands me the phone and says Tammy. I didn't even know he knew her name.

He asks "What da kids doing?" and means he is looking for Kayden and Koy

When Kayden and Koy were over they wanted to get in my big jet tub. Well we knew the boys had gotten water every where. Tyler came down and he was covered from the top of his head to about half way down his back. He looked at me and said " What happened Tywer?" Then laughed.

He totally gets Christmas this year. He keeps asking to go buy a "Christmas wish box for dad-e"

He came trotting down the stairs and said " Tywer hungry." When asked what he wants he does his little Think thing. Responds " Hot dogs" I tell him we dont' have any hot dogs. He said " Go to the tore to get a hot dog." He said the same thing about going to the tore in grandpa's truck to get some toaster struddles too. He really thinks if we don't have it we can buy it.

And my personal favorite. If he isn't asking for Lexi to come play he is asking to go to the store and "get a bwter or sister to play." It is really cute and heartbreaking at the same time. I sure wish there was a store like that!

A video!

Tyler is the cutest thing EVER!!!

Milestone moments

Over the last 3 months ( since school let out!) there has been explosions of words. We add words almost every single day. In fact in the last 3 weeks we have probably tripled our vocabulary and random words will just pop out.

The other day we were doing something and his animal fell. I said "What happened?" fully expecting a grunt. Instead I got "happen." Dallas and I looked at each other and gave our praise junkie EXACTLY what he likes. LOUD clapping praise~!

This morning we were making his bed. It is his only official chore and he LOVES it. He has frogs and he said "Ribbit" plain as day!

Since going camping he has asked for Mickey Mouse tent and Fishing. So today we made a tent using chairs. He got up on the chairs and he tipped it over. When the tent fell down he said " Oh no TENT!" He didn't even care he fell over.

The best of the day.... We needed to get out and we went to get Burger King and play. There were 2 little girls that kept asking him if he wanted to play in there "castle." Normally I intervene and let them know he doesn't talk and blah blah, but today I let him go. He followed them and then they asked him if he wanted the red or purple spot. BOTH are words he knows. I was not looking up but in his SWEET little voice he said RED really loud. They went to the red and he kept playing. I was so excited.

The best of the WEEK: We didn't hear the garage open one day and weren't sure when Dallas was coming home. He has had to work late a lot the last few weeks so we are kinda just awesome pals all day. We were telling finger puppet stories and the door opened. Ty hopped up and went running. For the first time EVER he says "Dada, dada" and jumps into his arms. Ty has been able to say dad he just WON'T without some MAJOR prompting. He usually signs it too. This was HUGE. The smile on Dallas face was priceless.

We can't wait for him to start school and head back to Speech. Seeing how much he has progressed this summer makes us really excited for 3 days a week of speech and the interaction with kids.

A friend of our that has a special needs child made a comment the other day. She said " I bet you NEVER get tired of hearing him babble or talk huh." It took me a second, and realized that I didn't ever get tired of it. NEVER. I don't care how much he talks when he is older I NEVER want to tell him shut up or complain about him talking because somewhere there is a mom ( like her) that doesn't get to hear even the smallest word.

It breaks my heart to hear other people complain that their kids talk to much. There is not anything in the world that is better than them having a voice. Hearing that voice put 2 things together is amazing!

(Sorry to Aunt Nicky for calling when we have new words. It makes me happy we can share them. )

Hula Hawaii

A vacation? Um no.

I so WISH!

Ty is obsessed with the Beach ( he says BEEshhh) and the Ocean ( oshen), water and swimming but most importantly HULA DANCING!

I am not sure the first time he learned to Hula but he stands up and hula dances for a couple of movies. He has a Barney Beach that he LOVES and has watched a TON since being sick this last week. He usually uses his blanket for his skirt.

We were SUPER tired of being in the house. Like 4 walls were VERY closing in around us. So just before noon we took off and went to see Dallas at work. He was just leaving for lunch with the guys from the office so we took off and went to Burger king.

I let him play.. for a LONG time. I was totally grossed out too! Knowing how many germs there were and that he is all over and licks walls and touches the floor and is eating his burger on ...GROSS! But I let him play. I looked up and he as CLIMBING UP THE SLIDE ( he was the only kid there) because he couldn't get up the other way. He was so funny!

We left there to run errands. First stop was the dollar store. As soon as we walked in he saw the Luau stuff. He pointed to the grass skirts and started to Hulu. Since it was the dollar store I thought HECK why not!

We went to 3 other stores and he carried the skirt around to all 3. I asked if he would leave it in the car and he said no. So he took it.

When we got home.... OH how freaking funny and cute.... He asked to put it on and he was so happy that he had a grass skirt.

He asked for Barney Beach and when BJ would put his on, so did Tyler. He would dance and dance and dance. I would LAUGH and Laugh and then try not to pee my pants. ( Just kidding! I think ) Ty also got a beach ball so we would count and he would say wreee( three) and HIT! ( kick or catch!)

He seems to really be catching on to all of the fun stuff. But really I think he just wants to go on a vacation and see the BEACH and the HULA girls.

We have till six

When we had Tyler we were not worried about his talking.We knew he would be OK. And we truthfully thought that words would just come.

Instead we really worried about his mobility. We did extra therapy to get him moving. We moved therapists when they told us that she didn't think he would walk. We encouraged him to move even if it was not a perfect gait.

Around 2 there was still no words but mom. There was more and more frustration. As time went on 3 came and went and still no words.

Moving back to Utah part of the reasoning was to get him around other kids ( like cousins that we would see much more frequently.. we had hoped) and sure enough. Just after Christmas we got a few words.

We go to therapy in Salt Lake City ( up around the U) and we sit through a 3o minute session then dive into Physical therapy or Occupational therapy or both. That leaves us there about 2-3 hours every Monday. It is a 100 miles round trip. Then through out the week we have our regular Doctor appointments. ( We see 9 specialists a Year. Some are every six weeks)

Something clicked in the last six months. I am not sure if it was school or just him. But we officially have WORDS.

Some words are only first letters of the objects he happens to be describing. Some of the words are not pheoneticly ( even spell check can't get that one right.. sorry!) correct. Sometimes he breathes in instead of out. But his point is getting across.

And the FUNNY side. He can spell. He can't say the word but he can spell. He can Spell Tyler and Mouse.

(I will try my best to share his words and how they sound)

DAAAD ( its really drawn out but it was the only way we could get it loud)

Key ( mickey)

Ick ( Nicky)

Gun ( signing more for Morgan)

x ( the sound for Max)

Ko ( koy)

K ( Kayden)

ex( Lexi)

pizza ( the z is said breathing in and spaced from the rest of the word)

doe ( done)

Ball ( signing at the same time)

All the animal sounds ( that are normal any way)

GiGi ( grandma)

Pop pop ( grandpa)

The whole alphabet and most of the sounds. And many many more. We are even starting to string several words together. It is VERY exciting to hear words.

If you spent time with Ty... You will start to see that new personality and lots of new words and when he can't get his point across a very frustrated little boy. But we have words.

They say speech needs to come by 6..... So I hope we keep going!

The Spoken Word

If you are new to our blog you might not realize just how much of a communication barrier we have with Tyler. We have pretty much tried everything under the sun to get this child to talk. I think I have seriously done EVERYTHING possible to hear WORDS!

So we say he is Non verbal but we aren't sure "what" he is exactly? You see.

He talks.

Sort of.

You see, since he knows all the letters and the sounds he will say the first letter of a word. Or he will copy a sound that sounds similar. He says "what is that" But it isn't REALLY "what is that" it is "wazat" meaning to him that is what it sounds like so he asks us wazat and we say oh what is that... and proceed to tell him.

Today at dinner we spent 40 minutes just asking him to repeat words. Here are some of our highlights.

Morgan- signing more and saying gun

Dad- signing Dad and saying Da

mom- mum

Leo- EO

June- JUne

Annie- A

Quincy- Q (sound)

Stop- tops and he puts his hand in front of his face like a

Go- Going

The list goes on.... But the funny thing. Most of the things that come out of his mouth are only letters and sounds that make up words because we know what he is saying. He is quiet when he talks and sometimes he breathes out instead of in.

Weird duck!

But the best part of life....

He wants to go the the BEACH! he says BEACH! All of it.

SO... my nonverbal son .. is verbal but not really...

But I will take what I can get.

Unable to speak for 2 decades, new device gives woman her voice back | WCBD

Unable to speak for 2 decades, new device gives woman her voice back | WCBD

I thought this was worth reposting..... I want to be that mom who hears THANK you mom and I love you!

And the WINNER IS!!!!

THE MOM!! At Nelson5!..

Congrats.

( an email is in your inbox)

A special Thanks to VOICE4u for sponsoring this post and giveaway.

No worries I have a few more things to giveaway ( if you didn't win)

Thanks again for all who entered. I appreciate everyone who reads our story and participates in my day, life and my parties ( good and bad!)

Snowboob

Met Snowboob!

She is Tyler's newest friend.

As we were putting together "things" to make a snow man face We came up with random and some what original things and Tyler decided to tell us where they all go.

The mouth is a piece to connect 4 that is shaped like a smile. The nose, and eyes are heart shaped slinkies and the arms are heart straws.

The front is 2 pop beads Ty affectionately called BOOBS and stuck them right in!

The heart was taken from my valentine craft and set in perfect view .

And of course Barney does get in on the action.

We LOVE mail!

Remember the post announcing we won a Barney video? Well, UPS came by while Ty was at school ( He was almost home.) So I left it on the front porch and thought I would take pictures of it instead. So To The Max, this fun stuff is for you!

Ty was getting off the bus. We had to check the regular mail first.

He finally realized that HE had mail on the steps and was looking around.

If this picture had sound!

Seriously he as so excited. I loved it. Especially since I KNEW what was inside.

Every day after school we sit on the bottom steps and go through his backpack. He STILL made us but he wouldn't let go of the package.

See... not letting it go!

As soon as we were done looking at his school stuff he signed dad and took off. Honestly, he signs dad.... Frequently.

So we took off and went downstairs to dads "office" and we opened the package.

( The video is so that we can have sound. His sounds are HILARIOUS!)

So if you don't want to see Ty for 2 whole minutes don't push play. It does show how we communicate most of the time. He does a pretty good job. We love him to bits!!

( Oh and it was taken on my little camera/video so any time I zoomed the sound goes out. Hooray for not pulling out our nice video camera. Maybe I SHOULD look for it)

And for those not fluent on Tyler language.. The hitting of his head is his way of saying "Dad" and the pulling is his way of saying he wanted it off or PULLED open. He is saying wow a few times and ohhhh... And he was showing Barney his movie too!

Voice4u

I was recently given the opportunity to try out the new application for the iphone/itouch/ipad called Voice4u.

I was really excited to try this App. Last week the communication device we tried in speech left Tyler crying and screaming. This seems to be the trend with every device that we have tried. We have tried switches, PECS, nothing, devices that talk, devices that light up. EVERYTHING.

PECS was the most successful. Which is why I was excited for this App.

So upon Downloading the application I went through and tried the pictures all out. I was excited to see the amount of PEC like picture.

The PEC pictures were simple and easy for me to see. However, just being on an iphone the pictures are "small" for a visually impaired kiddo. Which is why I am excited for the Ipad to see how large the photos will be. So not a total negative.

Positives of the program:

• Ty thinks that anything on the Iphone or Touch is fair game for him and he enjoys being on the Iphone so he will try it.
• The amount of pictures and choices are great
• The ability to upload and record a familiar voice is nice even when a "computerized" voice is available. That helps with sensory kids A LOT.
• The ability to control the volume. Most communication devices have one volume. Loud.
• In theory Tyler would be able to use this.

Negatives:

• I was a little disappointed that simple words like Mom and Dad were not pre programmed in. We would have to do those our self. Which is fine but would like to have had them on their originally. *reasoning for me: He isn't following our voice sound for some words so having DAD in there with another voice might be a better option than our own*
• I would like the ability to make my own lists. Ty isn't going to be able to browse quickly enough to do what he needs. But if I had a list or folder for afternoon activities and have 4 or five items in it he could use that folder to tell me what he wants.

Overall I really liked the program and plan to take it with me to his next speech at Shriner's to see if it is something that she thinks we could use with him. I am also looking forward to showing my nephew who is non verbal and see how he likes the program. Ty is one that has to be worked on slowly. I am excited to see how he progresses with it.

Biggest feature change for me is the category or the need for simpler folders or the ability to make and label and change mine around so it is easier for him to use. Maybe as he gets older and can understand more the need for the categories won't be there.

But great Application.

Cost: In comparison to an actual communicative device the price of $29.99 is rather cheap. I think that as technology continues in the new trend of touch screens and communication pads that this app has awesome potential to help so many people.

Voice4u- Awesome job. I am impressed and will recommend this on the boards I am on. I plan to keep trying with Tyler and it will be one we try on the Ipad. Then a awesome update will be added.

* This was a sponsored post. I was compensated for my time and given the application for free for the review*

Follow to a T

Since our sickness I have been impatiently waiting for my Tyler to come back. Minus the sleeping problems. ( boo on 4 am!) The last few days he has really been SUPER good. I feel super lucky. Every now and then I will be out of the room to hear a hysterical laugh coming. Being curious, I try to sneak down and see where and why!

Randomly the Why will be because he is stuck under his trampoline in our living room ( yes we have a trampoline in the living room) and he thinks it is funny. Other times it is TOTALLY random and usually he is laughing so hard he falls over.

Monday in forcing myself to stay out of my bed and wallow in self pity I packed up Tyler and I and headed out to American Fork ( I KNOW... we go far) to surprise Dallas and beg him to come to a exotic Burger king lunch with us. So we waited patiently. In true Tyler fashion he was laughing hysterically over NOTHING.

So today I was cleaning and a song came on The Super Sleuths and Ty was no where to be found. I started to head downstairs when I saw him WALKING upright on the stairs, singing the song. The words " very simple rules, you follow to a Tee, and a perfect hundred acre woods it can be!" and it repeats a few times. So as he is walking up the stairs he stops on the Tee and points to himself and says "T" and goes up a stair and stops and says "can be" The words. THE REAL WORDS!

We get excited and wait for Dallas to get home and sure enough big smile on his face Tyler does it for his dad. Then we get ready to get in the tub and after Tyler plays monkey's, laughs and gets tickled to death Tyler takes shows us his button, and his new word "BOOBS" and he gets in the tub.

He plays and does well all alone and all of a sudden we hear MOM... He NEVER says that to get us in there and I get in there and he says GO. Usually he signs all done.

A communication burst is coming. Slowly coming. Plus who can resist his little laugh! I can't!

YAY speech!

What a whirlwind of the past few months! We have talked about communication with Tyler a MILLION times I swear. The roller coaster dips SO low on that one. But I can honestly say that the upswing is going slow.... but going UP!

Therapy is going. Really.. just going. We don't see major strides in therapy. I don't know if it is the therapist or just the whatever. I don't know. He literally cries through most of therapy. The therapist and Tyler are like oil and water. I think they have had ONE productive session.

What I think is making a HUGE difference is his school and being around kids. Though we don't have my nieces and nephews much the little bit of time they spend with my brothers and sisters kids is making HUGE strides. And school! Oh my. He can sing EVERY letter of the alphabet sound. It is SUPER cute.

When my sisters kids come, she has 2 boys that Ty is stuck right in the middle age wise. He loves to follow them around and try and do the things they do. They are much louder than he is use to but he tries so hard to participate. And Lexi, has a follower fast.

The little girl across the street goes to school with Ty 2 days a week. When we get off the bus at her house he says Eh, Eh (her name is Ellie) and points till he can shake her hand and touch her. Her mom is the Primary President so she sees him participate with the kids.

Last week in Primary, he stood up with the sharing time because his name was called. He stood up there during the sharing time holding a glove for the spirit and the body lesson. He sang the songs and all that fun stuff.

The last few days we have had kinda limited mommy.( she has been SUPER sick) and so we have read a lot of books. Tyler has been found doing something that I have NEVER heard him do.

He is saying

EVERY

SINGLE

FIRST

WORD

Tonight when he asked for food he signed Food and said the F sound. He was offered Waffles or Toaster strudels. After showing him the box backwards ( he was trying to look around at the box front) he looks at me, grins and says T - T. And runs off to play. Fully expecting me to give him the T T that he just asked for.

I did.. And he ate them.. All day long we have heard words ranging from B(arney), Chochoo for train, miKey mouse. ( he says Ke) He sings, he dances and he says SOUNDS, that resemble WORDS..... Yes SOUNDS that resemble words.

Prayers at night rock. Both Dallas and I go away feeling so good. He is so sweet. He says SHH for Sheena. And T for Tyler. And D for Dad and m for mom... He is getting it.

On a scale of 1-10 in my frustration level with it...... I am at a 4.... NOTHING pretty much. It is doing great.

Huge strides... Huge strides.

I want to figure out what is in his head and keep working till we get it all out... Who wouldn't want to hear what his miracle voice sounds like!

Go Tyler... Keep going....

HOORAY!

I was a good mom and remembered parent teacher conferences. I know how much time goes into the teachers preparing for it. They had an online sign up and I forgot so I just called and made the appointment with the Teacher. Her name is Miss Holly. Cute cute fun teacher!

Since Ty had school today and I hadn't made the appointment she sent home the teacher paper she made for each of the kids. I am gonna brag on my kiddo because he has shown some AWESOME improvements in the last 2 months.

She said that he was able to put his own coat and backpack away ( which is a goal on his IEP that he will recognize his name and he KNOWS T!!) He is always willing to clean up his toys and listens and follows directions!

He is emerging in attending and participating in activities that he chooses ( of course.. he is kinda stubborn when it comes to other activities he didn't choose) and he is now participating in ones Miss Holly chooses. He is also communicating his wants and needs. ( before he would go in the corner and read books or throw a fit about going to the table to do a craft or a activity.)

Her favorite thing about Tyler is the way he gets excited while reading books and is so happy and engaged during circle time where they sing. And his laugh makes them all laugh and smile.

He is doing so much better with sounds of the letters. He is trying to communicate his needs and wants. We are impressed with how much he is doing but wish that it was faster!! We are so proud of him and are working so hard with him.

The saddest of the report was that he has a hard time with other play activities because he can't communicate with them to play with them. That is the hardest to hear because he is such a friendly kid but he lives in such a lonely world with no words. I hope soon to help him.

On another upper after the bus aide issue she never got transferred but Tuesday when I got Tyler off the bus the aide was gone. This morning when I got him on the bus we were introduced to a "new" aide that was going to be on the bus this week. I gave the bus driver some info about his glasses and he said that the bus aide would be replaced. She had more problems with another kid.

A positive for the week!

Please send up a few good thoughts on our communication so that Tyler can keep improving and that the play activities will increase. It helps his communication skills SOOO much .

From Warm sun to THIS!

Coming from warm and extremely HOT Arizona the cooler weather was so nice and so cool. It was great. We enjoyed going outside and playing and having Ty's birthday party outside. It has been amazing to see the fall weather and seeing the leaves change.

We have been diligent in watching the weather to see when to change from a jacket to a coat. When to put on long pants for Tyler and keep them on. When to spend the day at the park or when to bundle up in a blanket and stay in bed. But we were SHOCKED to see the drastic drop in temperatures this last week.

While Dallas and I both grew up here we have become accustom to the nice warm, and HOT weather we had there. Tyler has never been in this weather ( that he can remember) he was only one when we moved. He spent one winter here and we came and visited for a few days. This was the first time that breathe taking wind and snow has been in his world.

The snow didn't start to fall till he was getting ready for the bus but when it did fall it was a half blizzard. He would go watch and ask to go outside. He wanted to touch the snow, feel it and most of all THROW IT! He was having such a good time.

* Side note: We found Barney Christmas and he has been watching it almost non stop. They of course have SNOW and that takes him RIGHT to the window pointing and jabbering about the snow. You should SEE him dance and sing to the 12 days of Christmas~*

For the rest of the week Ty has been asking to go outside. He has been eating the snow (GROSS!) and he has been outside with no shoes and no coat and he has been out with a coat and till his cute little fingers were red.

Ty signing "cold." Look at his lips. He tries to say BRR!

His stool that he takes over all day long. Back and forth.

Telling Dad and mom that there is snow out there. All day he does this especially when he is watching his movie with snow in it.

Not sure that there is anything me and Dallas can do to prepare for the upcoming winter, but I am pretty sure a CUTE little Miracle is ready for snow, Santa and snowballs!

Verbal Abuse?

I have had the WORST experience with Ty's bus driver aide than I have had with ANYTHING else in his preschool experience. I had a huge issue with what chair he was put in last year but seriously this is NOTHING compared to the last month with this aide.

The first time I noticed that this was gonna be a hard was a week or so after we started riding the bus. I went to get him off the bus and the aide, before anything else, said " I just want you to know that the school aide isn't careful with Tyler." She proceeded to tell me that the school aide just put Tyler on the top stairs and walked away and he fell off the stairs. I asked if he was hurt or if a report had been filed and she said no he was fine she " caught" him but I needed to make sure they were more careful.

I kinda blew it off but I called the teacher and got her side of the story and I tried the bus supervisor and never got a call back. I figured it was just one of "those" things and whatever. As we would get him on the bus every day I watched how she got him up and down the stairs. I always put him on the 2nd step and got his hand on the rail and helped him up. But she would lean down and reach for his hands and pull him. His hands would be above his head and she would just kinda swing him around. Not "violent" per se but it looked like he was gonna get his arms pulled out of his socket. When Dallas was there he would go all the way on the bus but in general I put him on.

During our IEP I mentioned it as a concern. She just didn't' seem to be caring and soft when it came to Tyler. I had seen her not be very nice to the little girl that rides with Ty and me and her mom had both made mention that she was not nice.

The IEP people from the district said they would talk to the driver and the aide and make sure that he was not treated badly and that he would get assistance but not have her lift him like that or not let him do things himself. I thought at that point that it was over and it would be fine.

On Tuesday Dallas put Tyler on the bus and he walked on the bus with Ty and the bus aide kinda let the little girl have it about having her back pack on. I was kinda glad I didn't hear it but Dallas said he was wondering if the district had talked to her so now she was mad. When I went to get Tyler OFF the bus the aide said " Aren't you going to come get him?" I said no he just needs your hand to help him off the seat. She grumbled and he happily hopped off the seat and into my arms.

Wednesday I took Ty out to the bus, put him on the 2nd step like always and got his hand ready and the aide said " um Aren't you getting on to help him?" I said no he doesn't need to be picked up he can do it himself and we helped him up. She put him on the seat and not much was said when he got home.

Today when we got him on the bus same thing. Put him on the steps, got his hand ready and he got to the top and the aide was not there. She was slowly coming down the isle. Ty got over to the seat and she said " You can get up by yourself. Come get up, everyone says you can do it on your own." I was so mad. He is just a little boy. He needs help. And this is an adult.

I left him on the bus and I was in tears and called the transportation supervisor as soon as I got in. I talked to the teacher after school and she said that the bus aide refused to help Tyler and that she was not very nice but that she usually wasn't very friendly.

When Ty got off the bus the aide was no where to be found. Apparently she is going to be transferred. But the whole situation has gotten me so angry. I mean come on. He is 4. Can't talk. Can't defend himself and can't tell me when something has happened. He isn't able to take care of himself. It seriously has gotten me so upset. Why would you get a job where you are taking care of kids when you are not nice OR when you don't really want to help the kids? And what else are you doing when I am NOT around when you are mean when I AM around?

One of my biggest fears as we go through this world is that something will happen. That something bad will happen and he cant' tell me. That people who are suppose to be there to help him hurt him in some way.

It makes me sad. It makes me wish we could be there to protect EVERY second of the day. I know that he is safe but it makes me so worried. Makes my tummy hurt.

Shriners Hospital

I can't begin to describe my love for this place. I have mentioned it a million times but yet again it doesn't cease to amaze me. I am so thankful for Shriner's and the people that donate their time and money and give donations to serve children.

Today was our orthotic fitting and our speech evaluation. I was SOO proud of Tyler for being SO good. we talked about it before we got there and he was pretty good. The orthotic guy is NOT Brett but he took the time with us and did what he thought was best. Because we couldn't see any markings he was pretty sure that the kiddie gaits ( the 3K braces) are the cause of his sores on his ankles and not the SMO part of the shoe.

No adjustments were needed but he was impressed with his OTHER orthotic guy and the quality of the brace. Seriously I can't tell you enough how much we appreciate Brett, his time and Shriners for their amazing employees.

We then went upstairs for Ty's evaluation. We were early since they didn't have to do much for the braces. The upstairs of the "hospital" is a huge play room with luv sacs, TV's, a basketball hoops, balls, climb on toys and a few ride on toys. Ty was pretty OK with the wagon.

As we are going around the top floor of the play room we keep getting interrupted by the worker in the school. She was determined to get Tyler into the school room ( the room they have set up for the kids who are in for a long time.) and to give him a coloring book. Come to find out an anonymous donor donated 3000 boxes of crayons and a few thousand coloring books. She was so excited to give them to Tyler.

We then went over to the PT, OT room and waited for our speech lady. Ty loved playing all over the equipment and had a great time walking up and down the treadmill. He thought the was pretty cool walking to the mirror and waving at the other Tyler.

The speech lady rocked. I really liked her. Ty had a mini meltdown when we started and wouldn't let me talk to her. He wanted books and all of them. He was pretty good. But after awhile we found it would probably be better if I left for awhile. He didn't cry when I left but kept Blankie over his head for a while.

They have an observation room so I was able to watch him and was pretty proud of how well he did. The consensus is YES we need speech . We need it badly and Shriners will provide it free of charge. ( seriously there is waiting lists EVERYWHERE else and our insurance will only pay for 12 visits)

A few more things that she threw out there was a motor planning issue. Meaning the part of his brain that was damaged makes it so he understands everything he is being told but when it comes to expressing it and when he is looking for the right words or combination of words the slate is blank.

Another theory is that his muscles in his mouth are not right. A lot of kids with Cerebral Palsy have a speech issues because of this. They are gonna start working with some of his muscle issues and see how and what comes of it.

And another part of the puzzle is apraxia. Though true apraxia you cannot have any other medical issues ( meaning that if you have anything else wrong with you... even asthma or a medical condition or developmentally delayed) it cannot be considered TRUE apraxia be part of the problem. Apraxia kids can't seem to get the words to connect. So they may say "ba" but can't put the "nana" with it. Or they will omit certain sounds. For the last month we have really worked on getting ANY sound out of Tyler. We have tried just the sound of the letter. Our house and our play is getting kinda funny. It seem to be working and sounds are coming. But apparently not the right ones. We need Vowel sounds. If we can get the top 5 vowel sounds we are looking at a promising but LONG LONG road to get words.

They will be helping us with a communication device to see if we can't get the brain holding more vocabulary on the hopes that at some point he will make it come out.

We will be getting speech once a week there and 2 times a week at school. Then we have homework from private speech to get more sounds out. We are really hoping that we can get some more communication out of Tyler. At this point I am not sure how fully frustrated he is with his communication as much as I ( and his dad) are. there are so many things we want to hear that i think we took for granted '"thinking" we would hear as he got older.

We are happy with Tyler and how well he is doing. We knew it would be a long haul and I wish we knew earlier just what that little hole ( OK... its not really little) was going to do for his growth and development. How I wish I could take away the hard.

Communication AGAIN!

Communication is such a HUGE huge part of life. Sometimes it is UP and sometimes we are really really low. I think it depends on how much improvement we feel or see AND if I feel, as a mom, that I am working with him enough or not enough. One thing I have to remind myself a lot is that I can't change where the damage is in his brain. I can't control what the damage did. Though there is a lot of mommy guilt over it I often still wonder if I did everything I could.

We have had Ty in speech for what feels like forever. We rarely see improvement. In fact so rare that discouragement, defensiveness and anger, mixed with guilt is often found. Why would I be defensive? Because of the above mentioned mommy guilt. Little comments made makes me feel bad or that I am being judged. Anger because I am trying and we DO want him to do these things. And then of course the mommy guilt kicks in again.

Having his IEP the last week and gearing up for the CP clinic at Shriner's my mommy guilt was rising. Its hard to hear that your child is only participating at a specific level because of his disabilities. Its hard to know that they aren't sure if he can do certain things because he doesn't talk. Or sometimes they don't think he can do things because he is so stinking stubborn he won't participate.

While I went to my parents I used the die cutters and got us some Numbers and letters. All different colors and laminated them. Cut them out and we have PLAYED non stop with letters and numbers.

At first I thought it was just gonna be something he would take and throw ( which he does) but he gets what it is. We went through and went through sounds and he can say more than a dozen sounds. Putting them together with something else is still a huge struggle but we are getting sounds out.

Everything we do every single day is trying to get a new sound out for Tyler. Everything we pick up we sound it out. Every circle, shape, etc we ask him what it is and ask him to draw it for us. We encourage him to "pretend" play with whatever he is watching.

In the last 4 weeks he has started doing all those things that we have worked so hard. It is a SLOW process and we are frustrated some days. I honestly feel that communication with him right now is MUCH MUCH easier.

The best thing for me is if I ask him a yes and no question I get a real answer. Not a sound for yes. But a YEAH. A real no and he has an opinion about those yes and No's.

Today we also quizzed him in what letter was what and hew as able to go through and pick correctly. I now get to try again to see if it was a fluke or if he really does know his letters. He knows his numbers and shapes. What more does a 4 year old need right ?

A 4 year old needs a voice. We are finding that voice.

Yes we have tried it

One of the most frustrating and most hurtful things happen when you express your frustration with your non verbal child. Though I am sure that even parents with Typical kids feel the same type of frustration I can't help but wonder NOR have my feelings hurt that people would really think that we "didn't think of that" before!

When someone meets us for the first time Ty will wave at them. No words just wave. So cute that people will smile and say Hi and ask how old he is. I smile and say he is 4. And they will ask Tyler what his name is. I answer for him and say his name is Tyler and they proced to ask him questions. The hard part is then kindly letting them know he can't talk. While I am use to it by now people get "the look" of pity across their face. Which leads me to feel the need to justify why he isn't talking etc, which them they feel the need to explain the history.

So instead I am going to tell YOU all the same things that we get asked along with the well intentions of others.

1. Have you tried sign language? Why yes we sure have. We decided in the very beginning and it was also suggested by several therapist that we encourage words and not sign. Which we did. Then as we realized that words and sounds weren't' coming we switch to using sign and another system. While we have various words in sign ( all done, more, food, cookie, flower, pull/pool, water, computer, book, look) those are not all done correctly, meaning his sign for cookie is not the universal sign or ASL sign for cookie because his hands don't move correctly.

Explaining further Tyler cannon bend his arms and touch his shoulders in any way shape or form. He cannot rotate his hands and so holding a pencil, crayon etc takes a lot of effort hand over hand etc to get it to move right. So we have used modified sign language.

Modified sign language is not recognized in a standardized testing type of situation, meaning when we go into a speech and language test and they say say flower if it is not the ASL sign for flower he is marked down as not knowing it. When he can point to flower, tries to smell flowers, will ask for flower he, according to all standardized testing doesn't know flower. Therefore modified sign language is good for mom bad for the rest of the world who STILL doesn't know what he means. Mom is left as the translator. Because of his rotation problems he will not ever be able to fully communicate in sign. We add signs and we add modification signs because we need communication in the house but in order for YOU to communicate you will need to learn Tyler language and take the time ti understand HIM. He already understands you he just cant' express it!

2. Have you tried getting pictures and having him use the pictures? BY GEORGE!! we sure did. Its called the PECS system and we have been using a type of PEC system for some time. as he learns the PEC picture we teach a modified sign to it and in a day or 2 that picture is no longer needed. BUT his need to communicate happens to go out and around the pictures we have for the PEC system so we allow others ways of exchanging. For example. Instead of taking a Picture of Barney and a picture of Little EInsteins we have made a book of his movies. He can go through the movie and pick what one he wants. He can pick what book he wants to read. He doesn't need a picture to say book because he can sign BOOK. After a week with certain pictures he tends to find modified signs/gestures and would rather use them than the pictures.

PECS is going to be reintroduced in the form of a schedule on Mondays when he has the choice to do anything he wants with mom but he has to chose and express his choice. But again that isn't going to change that Me his mom is the interpreter.

3. Have you tried signing time videos? Why yes we sure did and he didn't like signing time. He can't even get through the introductions before he is changing the movies. We have gotten him to watch baby Einsteins and will sign what they teach of there but he doesn't like Rachel's signing time we tried..... more then once.

4. He will talk when he is ready? Really? cause he isn't and he is ready to talk. If he wasn't ready to talk he wouldn't be so frustrate that I guessed wrong. At this point there is something not working somewhere that is not allowing him to talk. WE don't now what it is.

5. Have you checked his hearing As a matter of fact we have. He has always passed hearing tests except at preschool where he was not about to allow them to put something in his ear. So we were sent to Dr. fugi a world famous doc that specialized in hearing and communication. Ty is perfectly healthy and Dr. Fugi see no medical reason why Tyler cannot talk.

6. Has he had a lot of ear infections? no Tyler has had ONE ear infection while we had the swine flu if 4 years. Other wise he has NEVER had one. An ear infection was misdiagnosed when it was suppose to be shunt failure. So auditory functions on him are in top notch condition

Those are the main ones we get.

Yes we let him pick to the best of our ability, yes we walk away when he throws a fit but the reason he is throwing a fit is because he can't tell me what he wants. He is frustrated.

When people say oh you probably didn't try this and we did, well it makes me feel bad. Like it didn't dawn on me something as simple as watching a sign language video would make him talk that I just wouldn't do it. I have done it. I have tried it several times. but he doesn't like it.

So yes... my non verbal 4 year old is STILL non verbal. And YES we have tried a WHOLE bunch of things and yes we will try a WHOLE bunch more......

Any other questions you ant to ask about what we have tried? Please feel free to leave a comment and I can see if we tried it or not.