Telling your kids they have ASD

A friend of mine was asking how I talked to my kids about their disabilities.  I realized that they might want to read that one day so I am cutting and pasting it here.

SO - on the telling your kids about their diagnoses.  That is a tricky one.  You'll have to really use the spirit.  Unfortunately Ty found a book under my bed "All Cats Have aspergers" when he was in 2nd or 3rd grade.  I have bought it at a conference thinking it would be a fun way to talk about with him a few years later.  But he had this thing for cats back then and saw the cat on the book, read the book, and then asked me if he had aspergers. But he went through some anger and high opposition towards himself in 4th grade re: it.  Duncan just asked if he had it - which I don't know if he still qualifies under the new DSMV or not.  He's on a 504 plan.  I've just told him that some people call it ADHD, some call it PDD, some think it's just anxiety, but that yes he is similar to his brother. He takes things a lot harder than Ty.  He worries more, is younger, and gets "embarrassed" easily by any accomodations. 

The other thing I did for years was have the boys watch things shows like Extreme Home Makeover where people have disabilities far more intense than either of theirs.  We would talk about the disabilities, the accomodations, the person's wants and needs a lot.  I also tend to do that around Christmas time because even though we don't have much money we always try to donate or help with an angel tree or a Navajo Christmas or something like that.  We've talked about how their needs are different from our needs etc. But how we all have needs.  I also did that with the whole Santa Claus discussion.  Finally last year I told them, that there really wasn't a Santa (when their lists were ridiculous and after I had tried the Santa has a budget), that helped them with their gratitude and with their Christ centered Christmas.  I'm glad I did that now that Santa has cancer :)  

This is a lot of stuff - but basically the more I point out people they can help, the more they help me around the house, and help our dog (that was a big one), the focus isn't on them so much.

But at the same time - we talk through the disorder esp. when things get heightened.  And I've had to do it a lot.  The lovely regressive part.  That is hard with my current situation.  We sat down and did a plan of salvation lesson and talked about my diagnosis and lightly my prognosis a couple months ago and still every other week or so they ask if I'll survive, if I'm dying etc.  Not fun to have to repeat those conversation.  So just know that as they process it will take many times.  I forget about that sometimes. 

I wish there was a way to let them know and really believe that I wouldn't want them to be anything else.  That all the therapy we do isn't to change their spirits or their hearts, its to give them the tools they need to make it in this world.

Tired of Me Today

Today I am a bit teary and weepy.  I am exhausted as well, but can't get my mind to turn off when I lay down for a nap. Yesterday my sister posted my situation on facebook.  And since then I have been overwhelmed by people.  Fortunately mostly via email or text.  I still don't talk well on the phone and I get frustrated that I am so tired emotionally.

A friend took the boys to 7-Peaks with her kids today and even though I am very grateful, I miss my boys.  But all I would do is hug them and make them feel awkward and that probably wouldn't end well for any of us. I miss them already and I'm not even gone from them.  I don't want anyone else to have them or for them to not have me. This is probably the hardest thing for me.  I have worked so hard on my children's disabilities.  It has been my life work for the last 9 years.

Today I am mad.  I don't want to leave my family.  I don't want to suffer. I don't want to do even the very first blood draw.  I did brain surgery.  Isn't that enough?  But I'm also mad that today it feels real.  So far it hasn't seemed like I have to die or struggle.  I've been head achey and stomach achey.  But those don't feel like cancer.  For some reason today it is more real.  Maybe because I've had to tell so many people.  I want to go do something else.  But there really isn't much of a something else to go do.  I get to sit and rest and so I decided to put down my feelings here, hoping it would help.

Things I love the most:
 - my darling husband
 - my Timon boy
 - my sweet Duncan
 - my faith in eternal families
 - my dumb dog who stays by me all the time
 - living up on the 2nd floor so I am closer to the clouds
 - a calling that has hope
 - red mango ice cream
 - my dear friends and neighbors

Things I hate the most:
 - nausea and headaches
 - giving blood and ok really anything to do with a needle
 - the thought of not being able to hold my husband or children for many years to come
 - people who pat me or who try not to cry while really crying
 - people who share everyone else's miracle cancer cure story  - makes me feel like I'll be jipped
 - the word "uncurable"
 - times like this when I don't feel strong

Rockin' Awesome

So it seems like I only use this blog to journal in the summer.  Well this summer we aren't going anywhere for the military.  But I have my own journey to go on.  This past week they found a large apple sized brain tumor behind my right eye.  So since these things don't just get to hang out in your head, it looks like I will be having surgery to have it come out soon.  That's a wee bit scary to say the least.  But we've been trying to stay positive and work through finding the right doctors etc.

Today at church Timon (11 year old) bore his testimony about how he knows that God answers prayer. He also fasted for the first time.  Such an amazing kid.  How did I ever get this lucky?  I need to remember that -- because there are times...  I asked him how it felt to bear his testimony.  He said that it felt "rockin' awesome" to bear it in front of everyone instead of just at home.  I asked him about fasting, it said it was really hard, but worth it. It that doesn't get to you then you have no tear ducts.

Michael also bore his testimony about being grateful for a mother who got him to this place in life.  She had her lung collapse last week (we're not doing so well in health department in the fam). And how he was grateful for the mother of his children.  Love that man!  How did I get so lucky!!!? Remind me of that the next time he's off militarying and I'm walking the dog in the wee hours of the morning.

Then my friend Shauna bore her testimony and bawled through the whole thing and told me how much she loves me.  One of these times I will loose it and start crying - but I haven't yet.  Don't get me wrong it pulls on my heart strings but you would think I'd start sobbing or something.  There were probably a few confused people in the congregation as well.  I didn't stick around to find out.  I'm not really in a chat about it with people I don't know mood.  I came home and the dog and I had a nap.  Maybe that's why both the dog and I aren't sleeping at night - because we keep taking naps.  Could be!

Happy New Year 2013

From our 2012 Jar of Memories:

Jan 1-25-12 - Timon was perfect at karate. His teacher told me he had the best focus in the class

Jan 1-29-12 - Timon came out of the pantry on the broom humming the Harry Potter theme song

Michael's OCS experience of losing and finding his map in land navigation

March 16th - You passed OCS and called to have our first real conversation in 2 months

May 5-24-12 - Michael sword fighting with Janell, Luis and Timon (Timon's birthday party)

Sept - coming home for labor day and seeing my beautiful wife waiting for me at the airport

Oct 13th - Ka tickets

Nov - Voted for President

Note from the tooth fairy to Duncan "Dear Duncan, thanks for the tooth!  I wanted to leave more money, but I found lots of grapes and carrots dried up and hidden in your bed."

Finding Kristi's Phone - (answer to Michael's prayer, Nov)

Rise of the Guardians - Dec Holiday Movie

Happy Holidays - Thank you for giving me a home!  Woof! (we got our dog Iris)

 Time for a new jar for a new year!

Back at home!

Bed at Fort Huachuca

This was our first week of being home.   I'll share some photos about our trip home.  But  basically I woke up last Sunday and just knew it was time to go.  Our 7 week stint had come to an end.  I think I surprised Michael - but I was done trying to entertain 2 kids in a small town during monsoon season in a one bed motel room without a real kitchen. So we jumped in the car.  Said goodbye to this critter:

 it was bigger than it looks, at least in my imagination!

Said goodbye to Dad - we'll see you in 11 weeks :(

Headed for Vegas and the Golden Nugget Hotel and it's water slide through a shark tank.  It was a bit of a trial stopping every 30 minutes for bathroom breaks that the boys could never seem to coordinate. And then our experience trying to track down our reservation - was quite the experience (but I'll save that one for an in person recount - let's just say it was trying).

 They are looking at the fish under the water

 See that tube in the middle - the water slide goes through the shark tank.  Pretty cool. 

 I even went down it!

 Here comes Duncan out the other end!

We stopped in St. George to see Grandma and Grandpa Burns - it was so wonderful and fun to be with them.  We did some school shopping at the outlets.  Duncan decided to just skip size 6 altogether.  He was a 5 in May and now he is a 7/8.  He grew up fast this summer.

The picture is at Paradise Bakery 

We made it safely home through downpours of rain. My home has never felt so big or so wonderful.  And my bed... let's just say, it's nice to be home.  The rest of the week was filled with grocery shopping, cleaning the car - thank you to whoever the really nice neighbor men are that took the car top carrier off that the bishop sent over to help me.

It was also SO NICE to see friends, have playdates, cook real meals, buy a bountiful basket.  Really -- every family should do what we did -- it increases your gratitude for what you have.

This week I was called to be the Assistant Adviser to the Beehives (the 12 &13 year old girls) at church.  I have wanted this calling forever.  I'm so excited.  I started reading the church's magazine for the youth - the New Era.  There was a great article in their that talked about praying for blessings - things that we don't have.  Well I DO NOT have patience.  So I started praying for patience as a blessing - not as a learning experience.  But just as a pure gift from God.  It's helping allievate my guilt complex to just admit that I don't have it and pray for it.  Of course this was challenged by the indoor water fight that started to happen during last night's playdate.

In my scripture study I was reading in Alma 5 talking about the parable of the vineyard.

21 and it came to pass that the servant said unto his master: How comest thou hither to plant this tree, or this branch of the tree? For behold, it was the poorest spot in all the land of thy vineyard.

 22 And the Lord of the vineyard said unto him: Counsel me not; I knew that it was a poor spot of ground; wherefore, I said unto thee, I have nourished it this long time, and thou beholdest that it hath brought forth much fruit.

and then in Chapter 6 we find the secret:

5 Wherefore, my beloved brethren, I beseech of you in words of soberness that ye would repent, and come with full purpose of heart, and ^acleave unto God as he cleaveth unto you. And while his^barm of mercy is extended towards you in the light of the day, harden not your hearts.

So I feel better - even if our soil isn't the best we can still bring forth great fruit and vs. 5 tells us how to do it!  Love it!

We also went to our friends the Erwins daughter's baptism on Sat.  It was wonderful! These are our Hawaii friends the Erwins.  There is a group of three families - we all knew each other in Hawaii.  The Erwins + the Bucharts + the Burns = the Burchwins.  We get together when we can for Burchwin events/reunions.

2nd Week of July

I'm trying to remember all the things we did this week.  This week is a bit of a blur.  I already posted about our TH ghost town trip and I already posted about Monday's trip to Parker Lake.

Other really fun things this week:

Tuesday night we went to watch the Salt Lake Bees take on the Tucson Padres.  We really went for the fireworks.  Michael got us great seats near the Bees dug out - 3rd row.  The boys were bummed that the Bees mascot didn't come too. That's Jason Adamson on the other side of Michael.  He's down here for a training as well.

Wednesday for the 4th we had a BBQ and went swimming at one of Michael's classmates that is from Logan. He and his family are renting a place in town that has a nice pool and hot tube and outdoor grill.  There were about 10 of us.  It started to rain - but that didn't stop my boys from swimming. We spent the afternoon playing games and watching library movies.  The favorite was "That Darn Cat". Yep the old one from the library.  My boys are watching Herbie movies as I write this. We are discovering the joys of the movies from my childhood.

Thursday was the Ghosttown tour.

Friday we spent all day running around trying to change our ID's - Timon is 10 now and needs an ID; but as we are realizing that with all things military it took way too much work.  They had Michael's rank wrong in the computer and I have to come back with his commissioning letter.  In the middle of all that we have been working on Timon's Weblos requirements.  We worked on the artist ones at the ceramic shop.

Friday night Ty finished his swimming requirements for Weblos.  He even "rescued" Duncan.  He is very proud about it. Now he's starting to work on his athlete requirements.

Saturday we went the Saguaro Harvest Festival at a nearby state park.  Apparently they harvested the fruit a couple of weeks ago - but they were making syrup and had lots of kids activities. From wikipedia: The ruby red fruit ripen in June. Each fruit contains around 2000 seeds plus sweet fleshy connective tissue. The fruits are highly edible and prized by local people. The O'odham tribes have a long and rich history of saguaro fruit use.^[3] The Tohono O’odham tribes celebrate the beginning of their summer growing season with a ceremony using a fermented drink made from the bright red fruit to summon rains, vital for the crops.

Here is a guy making arrow heads

 we are coloring native american pot pictures

 For some reason they have a fun house mirror from the world fair - ???

 Making stick calendars

 Creating paintbrushes out of Yuka

 Grinding meal

 Holding a snake

Since we were close to Tucson. We headed over to the Titan Missile Museum.  It was really cool.  But my kids were pretty spent and made it very difficult to concentrate on what they were saying.  I recommend it without kids. 

 It's hard to see but Ty is standing by the pale green and black door which is wider than he is.

 Command Central

Since the kids were done - we just drove by the mission San Xavier on the Tohono O'odham Indian reservation, it's the oldest European Building in Arizona. The current church dates from the late 1700's, when Southern Arizona was part of New Spain. In 1783, Franciscan missionary Fr. Juan Bautista Velderrain was able to begin construction on the present structure using money borrowed from a Sonoran rancher. He hired an architect, Ignacio Gaona, and a large workforce of O'odham to create the present church.

Following Mexican independence in 1821, San Xavier became part of Mexico. The last resident Franciscan of the 19th Century departed in 1837. With the Gadsden Purchase of 1854, the Mission joined the United States. In 1859 San Xavier became part of the Diocese of Santa Fe. In 1866 Tucson became an incipient diocese and regular services were held at the Mission once again. Sisters of St. Joseph of Carondelet opened a school at the Mission in 1872. Franciscan Sisters of Christian Charity now teach at the school and reside in the convent.

The Franciscans returned to the Mission in 1913. Recently, Mission San Xavier became a seperate nonprofit entity.

Ghost Town Tours

Michael was in charge of the adventure on TH on his day off.

This sign is a pretty good hint at what we spent our day doing.

We started just out of town at Brunckow's Cabin.  The bloodiest cabin in Arizona history.  Bronckow, a German immigrant and employee of a regional mining company, established a claim in the late 1850's  just south of what would later become Tombstone. Allegedly Mexican laborers working the mine attacked the crew. Just over 20 years since the slaughter of Brunkckow and his companions, an additional seventeen men met their fates on the property.  Today it is said to be haunted.

or at least visited by these good looking guys

and the mine.

Didn't realize when in said animals next 7 miles that we were probably on somebody's ranch.

Then we saw this sign - had to take a picture

Then we saw this one and knew we had to stop by.

rattlesnake headband anyone?  Should've got it - I'd have won the white elephant party this year.

For April, our fav. photographer.

In honor of the drink Michael keeps giving up.

Back on the trail - we found the 1910 Jail in Gleeson, AZ.  Gleeson and the hills at the southern end of the Dragoon Mountains had long been mined by the Indians for turquoise.  White men came in the 1870's and found copper, lead, and silver. Gleeson changed the name from Turquoise to Gleeson.  He sold out in 1914, but it continued to provide copper until after WWI when prices fell.

and its wagon outside

what's left of the school - guess not much has changed = we spend more money on our prisons than on our schools.

I think this is Courtland, AZ - it is the only community on the Ghost Town Trail that is completely deserted.  It has only spase remnants.

another well built jail.

Last stop: Pearce, AZ and it's famous cemetary.  It's named for Jimmie Pearce, he and his wife saved up and bourhg a piece of the great outdoors.  One day he found free gold on the side of hill.  The town grew at the base of his mine.  He sold the Commonwealth for $250,000.  His wife remembering harder times included a clause that allowed her to run a boarding house until 1930. There is still a mercantile - it's for sale if anyone is interested.

The reason for the soldiers buried here is because this was the Middlemarch Road, a trail across the Dragoon Mountains taken by soldiers trekking between Fort Bowie and Fort Huachuca in the 1870's and 80's.