Longest MONTH EVER

This has been the LONGEST month in forever! At first the days went by forever slow because Tyler could do nothing. Then he could want to do something. Now he WANTS to do things and he can't. When he tries and can, we wear it out. Meltdowns are plenty and loud and hurtful too!


So here it is in all it's glory~

Car rides were REALLY hard and we couldn't stay awake....... ever. 

We have mastered go fish with the Paw Patrol. 

We got Tattoo sleeves with stickers to go on top!

We got an invitation from our Best Friends at Sesame Street and we were invited to watch them DANCE!!!! 

Turns out, that my baby grew up the last six months and I don't know where he went. We sure do love him a lot. 

And because our baby Grayson LOVES trucks,  we had to get a picture of the coolest truck in the world....

We wore pants! and took the gross, nasty knee thingy bobby things off for a bit. And we had a few really great leg bends. 

Sleeping with turtles is incredibly relaxing.......

Basketball Games, in wheelchairs, in the kitchen for a while!!! 

We figured out free Student bowling for the summer and were worried that it was out of the question. His Chair fit right underneath his ramp and we had a great bowling session. Grayson LOVED it. That kid has ben bowling since he was 3 months old. He lost by one point. But that stupid ARCADE kills our budget EVERY TIME!!! 

After a day and a half of a meltdown and three workers at a total loss of what to do to help him. With seizure meds and rescue meds and other meds and him biting and screaming. It was pretty bad. We wanted to have him try to play some games and stay off of the iPad and spend some times reading and playing games. We have picked up a few good ones  recently.

During the meltdown we were able to get him into the pool and it really chilled him out!

The weather changed and we made snowmen and Tyler made snow angels to go with it. Of course it was a pintrest fail in the highest level, there than the boys LOVED it. So for that we will call it a WIN!! OH, and yes, it looks like crack.

We sleep in pool watching Octonauts



We are still serving. We have 3 weeks.Then we get the stink feet things off and we see what damage we have done to his walking muscles ad then we have to get PT going. School is not loving our wheelchair option thing. But we have LOTS of things to work on soon.


So till then........ we play with SHUNTS and meet the Pope!!

Summer?

It is true. We are almost done with summer!!

OK, just summer break.

Summer weather will last for a few more months. YES months. And no worries, we are TRULY roasting this year. Not sure what it is about the heat this year but I am DYING.  It isn't as hot as it was last year, but it seems we are more humid than we have been. Or, I am just entering menopause and 100 feels way worse than it should given our geographical location.

I guess the worst part of the hot is that we are moving... again. I think we have moved more than I care to in the 9 years of being married. We, however, have found an awesome home. Our house is in the same ward, ( small area in which we attend the same church service. Click here to know more!) and the same school. So there is no changes with the people we regularly associate with. The only MAJOR difference is there is no stairs. Oh, let me repeat that... THERE ARE NO STAIRS!!




We are only losing the square feet of what our stairs were. We do lose a den and loft, however, we have a sitting room that is bigger than both of those. We don't have enough furniture though. (I guess in a world of organizers, that is actually a good thing. )



We love the kitchen area. and can't wait to get into the swing of things. We love everything about the house. Honestly.... LOVE it.

I love built in and have one for the living room/family room. It will make it so 2 boys will finally not have toys all over my house and they can have their toys in their rooms. No one is sharing when we get in this house. Which means I get my bed back ( with my spouse in it) and Grayson will be put in his new bed, in a room where he can't open the door!



I know that some say "built-ins" were  so last season... But I am so totally excited for it.

But the best part of the WHOLE house is my new, amazing and kind of cute appliances.



This is by FAR the best part of the house. I love them. I had a huge appliance crush on my front loaders but HATE them, so back to the normal kind and I can't wait to get my first load of dirty clothes in there.

We have Grass in the backyard. We will have to revive it and see if we need to plant winter grass and we are going to be putting in some boxed garden boxes and we have GRASS. And trees!!

My room has a garden tub, in which the boys have already determined that it is where they will be having their bath. They also call it a pool.

But the 2 best features, right next door is the park. It has riding trails and lots and lots of things for the boys. The second, the amount of LDS people on our street. Most of them are in the right age range for Tyler, which means Grayson will tag along just fine.  Grayson's little friends are just around the corner.

So we have been moving in for a little over a week. Half the house is over there. The other half, well, we are in both places.

Another huge shout out to Grandpa for coming down and leaving your truck. Then going back and taking care of granny and Aunt Ti Ti. Then to turn around and come back on Friday  to pick it up. My boys LOVE and adore you in so many ways, so they are not sure what to think when you leave.

So if you need our new address....... Call my mom... ha! No we will have to make a mailer or smoothing. No one really mails us stuff anyway.

Summer Camp

This year we made the decision that Tyler needed to go to a summer program. We started looking at them last year and never did it, but given his current need for something to do, and for a schedule and because his abilities ranges from age 2-9. There are SO many things that people don't realize that he can't do. But our new worker is REALLY good at helping us get his goals met.

Summer program for Tyler didn't work for him to go all day but he is going for half the day. It has given us a structure for summer but it leaves time for us to do things together. The full day summer program was a traveling one and he wouldn't really work to do the movies and a few other activities so we didn't do those. But I am glad we opted for the every day program.

He loves it. He loves to go, comes home happy and makes friends. The place he is going is very big in the Autistic community so he is with a lot of autistic kids. But one thing about those kids, they become friends and stick together. Tyler has made a friend with a little boy named Daniel. Apparently they are totally inseparable at camp. He even drew Tyler a picture. Tyler talks about him all the time and Tyler has done really well at the camp. If school doesn't go as great this year as we would like, we might have to take a look at what they have to offer for school options as well.




I have been impressed with his summer camp experience and am pretty sure that next year we will be going back.

June went fast!!

We are into July!!!! The hottest month of the year and monsoon season. Oh joy!!

A few months ago our landlord called to let us know that he has decided that he needs to put the house up for sale. We have been here for 2 years. We like our house. We love our ward, we love the school Tyler is in and we are just really comfortable here. It is a commute for Dallas but I do all the other stuff around and we are pretty comfortable where we are. The current neighborhood we live in is hard to find a place to stay. For example, the house next door was going to be vacant about the time we needed to move. Well, it went on the market for 12 hours and was rented.

But we were lucky and got a great and amazing house in our neighborhood. A one story!! 4 bedrooms, a small amount of grass,  and a park next door. I am SO thrilled to be in a one story. And we were so lucky to get it.

This is my new house!! It is just across the street in the bigger "estates" from where we are and we are THRILLED to be there. It will be so amazing for us to have a one level. And for Tyler to no longer have any stairs. Carrying him up the stairs is just getting to much for us. 

So as of July 1st we have 15 days to pack before we can start moving stuff in. I have 2.5 weeks to get everything moved over and the old house cleaned. As soon as we get into the new house Tyler starts school. Our summer is quickly coming to an end. Super fast!

I am so excited for this house. I am so thankful for this house. I am so thankful for our ward and that we are on our learning curve to have Tyler be welcomed and things becoming more and more adaptive to the needs that he has. ( And a cute little girl just moved in, in a chair!! I almost ran her mom down with excitement that someone will be there that gets it!) We still struggle getting scouts adapted but we will figure it out.

A HUGE thank you to my dad who is loaning us his truck. Renting a pick up truck was insanely expensive. So he is driving his truck down for me. (With a 12 dozen Butterfingers donuts from food ranch ( I hope) ) He may have to come a day or so early but he will come on sweet big boy's Birthday. ( Yes my baby is 3!!!) and we bought him his plane ticket ( FYI Allegiant air in the summer is DIRT cheap if you don't bring luggage!) to get him back home.  We will keep the truck to work throughout the 2 weeks and then Fly my dad from Provo to Mesa ( seriously ALLEGIANT all the way!!) to drive back home.  Our ward his helping us the day my dad leaves.

We then get to clean and clean, get carpets cleaned and close this door in this summer house nice and tight.

Each new house we move in, comes with new ambitions to get through. My first one is to become organized to start. We accumulate just STUFF but I am learning to be less clutter filled. So we are dejunking and dejunking and selling and donating.

And the hardest and most permanent thing. I won't be taking a crib with me. Not even to store for the "next" time.  We have closed the door on baby hood forever. Moving into a new house, with no baby, but a big boy and his best brother.

Here is to a new place, new start, without starting totally over!!

Summer Camp and San Francisco

We had one week after school was over to have Tyler at home. The week after he started summer camp. I was not sure if I wanted him gone every afternoon. The week he was home, we went bowling and to the indoor play place. It was great, but Dallas was getting ready to leave for a week and we REALLY were hoping to figure out how to balance no dad and every one's stuff.

Dallas was sent to WWDC this year. His app has done really well and has been featured on the app store pick of the week and summer for most of the last 2 months. ( I guess that makes up for the time that he didn't come home for a month) but it also got him to the conference, which he loves attending and it was such a great year for him to go. They announced a new language, a new system and networking is always fun there. He even went to the "exclusive" twitter party. ( OK so here is my sarcasm... What kind of a party is it, if it is just geeks and trust me, watching Twitter that night was HILARIOUS!) But he was gone for the entire week and it was up to me to figure out how we were going to do this summer thing.

This year we decided to put Tyler into summer camp. He had never done a summer program before so we opted to not travel but do the non travel group. He is there every day for 3 hours and he LOVES it.  He also earned a few hours at the local bowling alley and the arcade. After a few days of Dad gone, we decided to head to Flipside.

Tyler and Grayson got the 3 hour pass so that they can play way to long on things that take FOREVER but they both LOVED it.

We played the infamous mini bowling for 4 games. And then headed to the arcade. We played a ton of games and then we decided to try the bumper cars! Luckily it wasn't very busy so it was just Tyler, me, Grayson and our worker. I was not sure how in the world Tyler was going to drive this thing. But he tried. We got him out into the middle ad bumped him a few times and spun him around. It was fun to watch him.

Grayson did great. He was in HEAVEN!! I swear he would live in a car if he could. 

By the end of the week we were SO thrilled to have our dad home that we could almost burst!! Dallas has lost a ton of weight and when he got of the plane and we were looking for him, we almost missed him!! But Oh it was so nice to have him home. The boys were thrilled. And to make it best, Dad brought home apple shirts and everyone slept in Apple gear for the night.

 

We were so excited to see when our dad was and well... they were a BIT specific!!! we watched them take off.... OH we were ready for him to come home. 

It is nice to have our little family together. Dallas makes life much better. He is just this solid person in our lives. The day he left Ty had a seizure ( or what we think was a seizure) and I was on my own. And I realized that I CAN do it on my own, but I would rather do it with him!

Huge congrats to Dallas for a great app and hooray for the weight loss. You look amazing!! 

The Pool

When we were looking at houses to move into we thought we would want a pool AT our house. While I still think that would be awesome, I am glad we didn’t get one this time. The upkeep would be insane and very costly. But we have 2 kids who can’t swim. But we did want a community pool.

As we looked and found the house we wanted we were even more sold on the community pool. We were sold on the close little park that is covered too. We were also sold on our house and the street. We LOVED our neighbors, but they moved. Our street is lined with people from our church. It is a good place for us.

Our neighborhood pool didn’t get a visit from us until this summer. We didn’t go over when we first moved here because it was August and we were starting school but this year, we have made it. Once a week!

Here we are, enjoying the pool:

My red headed, fair skinned, curly haired  Boobie baby!

He will find a plane wherever he goes, or he will compromise. 

Ty is doing really well and enjoying the water. We burn our feet when we get out but we have a good time. This particular day we ordered pizza and met up with the pizza guy at the door. The boys devoured the food and Grayson took a nap. 

Summer is heating up fast around here. So middle of the day swim trips are slowing down. Next week we will be doing all 3 therapies, and having some testing done at PCH. But otherwise, stress and crazy schedules included, we will be busy. 

DDD Visit

The same day as Ty’s IEP at school I had scheduled an appointment with his Case worker for her to come do her home visit with us. Ty has to be there. I have no idea why, because she didn’t ask him one thing. But the house was a typical mess with Ty just getting done with breakfast and me not moving very fast because I didn’t have to take him to school. Dallas had done the feeding and then got ready for work.

So frantic and busy was how we answered the door. And naked. Grayson and Ty were naked. Ok, they had diapers. As we started the interview, she literally had nothing to say to Ty but we had to have him there.

As the interview continued we went through and added some goals for Ty. Nothing new and nothing that hasn't been on there. But we did the last ISP when I was getting ready for a hysterectomy and we hurried through.

To make a not very exciting post short so we can move on to awesomeness, here is what the end result is.

Ty has 600+ hours a YEAR for respite. It turns out to like 10 hours a week.

Ty has 40 hours a month of Rehabilitation services. Turns out to be 10 hours a week. Hab services the person works one on one with Ty for certain things that he needs work on. It also includes having him out in the community to make good choices and learn to do fun things.

The NEWEST and most exciting is that Ty qualified for Attendant care hours. 13 of them to be exact. So if you aren't good at math that is 33 hours a week of help for Tyler. You have NO idea how NICE this is.

Ty is approved for 2 times a week Physical therapy, OT once a week and Speech once a week. We currently do not have any of them. We are having hard time finding a center or even home based for him. We are working on having some DTS hours for him ( which is for Day time service hours) to allow him to go to a sort of summer camp or something that is geared to him.

Having help throughout the summer is a DREAM come true. We will be starting weekly therapy in Phoenix if we can't find a local east valley location so having someone there to help will be amazing.

The above is the reason we left Utah. Utah we got NOTHING. No help. No long term care. NOTHING.

Now on to the fun stuff.


When I hit publish on this post we have 2 more posts before 1000 on this blog ( I have had 2 others that we have saved for journeying purposing.)

Any ideas on what we should do? 1000 about Ty and us? Questions and answers? A giveaway!?



An older but good photo for your viewing pleasure of a pretty BLAH post...

He is BACK

The ENT said that the tonsillectomy takes ten days to get better. Oh boy was he NOT kidding. Friday hit our official ten day and I was able to breathe deep. He no longer had to be in total seclusion, we didn't have to be on total house arrest and we didn't have to take a nap OR be sad all day.

Since we changed so many things at once because he was sick we aren't sure what has changed but the biggest change we have seen since having his tonsils out is that he has slept a lot better. He hasn't had his pain medicine for awhile. And now I am Jinxing myself, but he has slept in his own bed through the night for almost a week!

That would be A WEEK!! The longest he has EVER done that. 5 years. FIVE YEARS. He hasn't slept through the night. We have been vaguely impressed and we really don't want to be jinxed. So we will pretend I didn't say it out loud.

Today we got the house cleaned up and we went out to pick up all the rest of our medicine. We decided to pick up a little pool for the back yard. ( OK it is a big pool) Ty was so excited. He spent the whole time walking around the store saying " wow, Neat!" And then saying pool and swimming and open.

We blew it up and we started to fill it up. The water in Utah is COLD. Arizona it comes out warm. Ty played for a bit then decided he was done.
'

We have a few crafts that we are going to do this week and we need to take a trip to the library.

We hope to be able to find a few activities this month. The Labrum's are around so hopefully they will come and play!

Shriner's Hospital and Rifton Bikes

Today marked the first official start of our Summer. Ty has been out of school for a week but due to vacation/traveling and grandma and grandpa's house we haven't been home. Since we didn't qualify for summer school Ty is ALL mine for the summer.

One of the things that I have the hardest time with is getting everything done ( house cleaning, entertaining etc. etc!). Part of it is being lazy but the other part is Ty takes up a lot of my time. Just like any kid, any time you do get something clean they are quick to unclean it. Unless I am entertaining him he is trashing EVERYTHING. He doesn't play on his own at all. ( I guess you can thank his non imagination play!)

So I decided he MIGHT benefit from Story Time at the Library. We don't live that far from the Library so today we checked times, called and made our appointment( limited space) and we left and walked to the Library. Tyler loved it.

We came home, ate lunch and off we went for our weekly therapy in Salt Lake City Shriner's hospital for Children. Therapy today was just PT. Our Speech Person canceled while we were there. Kind of disappointing given that we have a bunch of words. FINALLY!

One of the things we are working on with Tyler is balance and distance. He can't walk on his own for a long period of time. Though he tries really hard it just isn't possible. He holds onto one of our hands for stability. If he didn't do that, every 500 yards or so he would/does fall. Hence the broken nose and stitches a few weeks ago.

One of the other things we have thrown in to the mix is riding a bike. Shriner's has this really cool adaptive trike. It is big enough that he would be able to use it till he is like 150 pounds or more. At the rate we are going he would be 20 before he out grew this bike.

The trike is called the Rrifton. It is Lime green and awesome. I seriously LOVE this bike. It comes decked with foot extenders so he can easily and quickly pedal and man can he go. BUT WAIT... there is a catch to the bike. $1500 dollars worth of a catch! ( unless of course a nice person knocks on my door with a check!!)

While I would pay that in a heartbeat it isn't going to happen. But the best thing about Shriner's. It's FREE! Now don't go and get over excited on me. We don't have one yet.

The Catch- The REAL catch!

There is a waiting list.

AND Ty has to show he is interested on his own ( check SORT OF) and be able to do 5 rotations on his own. ( check, check) This has to be done for several PT visits before we can be put on the list. I am not sure how long the list is but don't you think it would ROCK for this kid to have THAT bike!

After riding the bike Tyler was pretty spent. When things are hard it is like pulling teeth to get him to participate. We did and we kept pushing. Our therapist, Mark, is really good about standing firm and not letting Tyler get his way. He never comes right out and says it but he thinks Tyler is spoiled. ( I know... not my child) He is constantly telling me how much Ty would benefit from "other" children, like a sibling. ( Gee really! Thanks... and if I had a DOLLAR for every doc/therapist/stranger on the street that said that to us, I wouldn't have to wait for the dang waiting list for THAT BIKE!)

When therapy was over, we visited the prize box. Ty is slowly getting not impressed with the box but he was happy with a Tinkerbell sticker book. He told Esther "BYEE" and off we went.

What makes Shriner's the " Almost happiest place on earth?" It is run solely on donations. The Mason's and other private donors give to this wonderful place and their donations make it so that kids like Tyler get to have therapy that would otherwise be to expensive and therefore non-existent.

In recent years, the donations and cost associated with the hospital and the care has gone up. They will now charge your insurance BUT what your insurance doesn't cover they will pay for. You never feel obligated in any way to pull out your debit card and pay a balance or cry at night because you can't ever pay them enough.

Instead we find ourselves thanking those who are able to donate and DO donate. It is because of their charity we feel that Tyler is doing so well.

What do you think of the BIKE!!?

Preschool Program

One of the things I was kinda sad about when Ty went to a "special" school was that he would miss out on all the cute little programs and field trips. They can't really do those in "regular" schools so he was kinda out.

I was pleasantly surprised when I got a program invitation for Ty's classroom. I have to say we are SUPER impressed with Miss Holly and we are SO excited that Ty will be in her class again.

Ty singing with the class. It was more like Ty was dancing and every one else was singing. It was SUPER cute!

Still Singing. He was really GOING at it with his air guitar. He LOVES songs. After singing he was given a certificate. When they said his name he walked up and got the certificate and looked at it and handed back to Miss Holly and went back to his seat. Then we watched a cute little slide show she put together of the class. Because Ty goes every day for school he was in there A LOT! A little boy sitting next to us would get SO excited when Ty was on TV. He would lean over and SCREAM " TY you are on TV.. look look ." And then he would sit back and say LOOK all over again. Ty on the other hand, sat there all quite and would clap when they said his name.

Afterwards they got Popsicles and he surprised everyone by ASKING.. for a purple one! YEP he ASKED for Porporle.. ( it really is CUTE!)
Last but not least he got a sweet little present from one of the teachers. A cute little shirt that she drew for EVERY single kiddo. It was SUPER cute.

We are so not looking forward to not getting summer school this year because he LOVES school and loves other kids. He is going to be having a medical summer and probably will be really bored. Hopefully I can get him out and about and plan some fun crafts, cousin time and visits to places like the zoo and to see the penguins.

Oh and Potty Training...

We love the progress he is making and think he is doing great! Stay tuned for the video of his class and then hopefully we can get him on tape with WORDS!

Here is the video. It will probably be more interesting for Grandma than anyone else.

Tyler Preschool Slideshow 2009-2010 from Dallas Brown on Vimeo.

Outside

We have had some major issues with Ty and his behavior. We aren't sure if it warrants a doc trip or just a really long vacation. It is getting to be a little tiresome.

He already has sleep issues but they seem to be rearing their ugly head a little bit the last few weeks. In 5 years Tyler has NEVER slept through the night. While generally we have dealt REALLY well, this time we are not. He comes into our room around 2 but the last little bit he has been in here around 12. He cries when I take him back to his bed. So we put him in here and Dallas sleeps with him and I sleep on a air matress. We recently ( like yesterday) got him a twin bed so that I didn't have to sleep on an air matress any more and we hoped it would make him sleep better.

So the last 4 days straight he has been up at 5 asking for Mickey. It is like his brain can't stop and all he thinks about all day is Mickey Mouse. It is preschooler crack I am telling you! Because I am exhausted and have also found myself staying up past a "normal" 10 bedtime I am awake but not awake downstairs.

The worst part, we don't take naps. Or more so TYLER doesn't take naps. But his crabby pants have made it so I LONG for him to take a nap for my sanity. But we find if he does nap ( he feel asleep at the neighbors on Friday) the night/day after is even WORSE. So no nap for us.

So what has kept our crabby pants at bay.... OUTSIDE

Grandma and Grandpa came up on Saturday and mom and granny went out to lunch. Left Dallas and grandpa home to fend for themselves. They worked SOOOO hard on our lawn and yard. Ty apparently spent the entire day outside. I was so excited to hear that he was happy and outside. In hopes that he will be nice and tired we spent an additional 2 hours after grandma and grandpa left OUTSIDE.

Ty and Barney had to be like Dad. Sun glasses!

Ty did his normal routine and to bed he went but today was the same story. We woke up at 5 and then went to church this afternoon. We couldn't stand his crabbiness so I took him in the car. we didn't get to far and I let him play at the park. He loved it. He was there for 2 hours.

So far I have been in his room 2 times and to top it off we have no air conditioning so it is hot and for us that is TRAGIC.

So the question of the year~ Is it time for a ear check? Do we try and spend all day outside? We are avoiding putting his pool out because we have to put casts on in a few weeks. He has 2 more weeks of school then what do I do with a kid that is NOT happy. Do we implement naps and stay up late?

Summer in Arizona

Ya know.. Arizona is HOT! Not just summer in Utah hot but HOT HOT! Starting a month ago we topped the charts at 100 for a few days then went back to a comfortable 90's. I laugh, a year ago 90 degrees here was torture. Now, I can still wear a sweatshirt in the early mornings and I can wear long pants at night.

So what do you do when it tops at 111-115 degrees? In Ty's case you play outside. I have to drag him in to make him stay in. I also get to listen to a sad bubba because he wants outside.

Of course you can't go to the park because the toys there will burn his little butt and you can't play in the water because it still comes out HOT! So in true Tyler fashion you Throw rocks.
See the fair skin gets BEET red when he is out there and that was right at the start of going out.

Despite his lack of mobility and slow moving walking he is getting around. But he is so determined to get what he wants. Check out him trying to get his ball.
He doesn't even care that it might hurt his hands. He is so determined.
He loves his sand box so much that he wants to get in it and play in the sand and throw stuff that it drives him crazy that it gets to hot to play in. BUT he gets on his hands and uses his feet ( just like when he gets the balls) to get over and play. He can't sit in it till later in the evening but he still like to play. Look at his determination.

That is what you do in the summer time! Guess HOT weather looks nice on someone!!