PAC - Just for Fun

I have really liked photography for a long time. When we lived in Arizona before I thought I was rocking the camera, and I took a few really cute photos. Other than a few paid shoots and lots of fun friends who will ask me to take their photos, it hasn’t really gone any where. In Utah I learned a better and more professional way of editing photos and did a few more friends and family. I was able to learn a lot and once again, find that I really, really liked it.

It became an expensive hobby. One that Dallas indulged me in. He upgraded my camera, bought me new lenses. Let me rent new lenses. And I played with new software. He was great to let me have a really expensive hobby.

When we moved, I wanted to do more down here in Arizona, but lacked the confidence that I needed to make a go of it. I still take photos. I have a few shoots every few weeks. I have to work around a husband who works insane hours sometimes, and no sitters on other times and just being a mom in general. But I do like it.

When I moved to Arizona I joined a group called The photographers Adventure Club ( PAC). I found it on Meetup.com and joined the “premier” group and have met some amazing people. I have also found that I still really like taking pictures and the more I go to the PAC, the more I learn. I have also met some amazing photographers and even join in on the fun. I DO NOT like Google+ but I get to use it for the PAC and have started really looking forward to the things they offer and the weekly themes and the new learning experiences.

My first few photos and the learning process:

I thought this was such a stellar photo! Seriously. I did. I loved it. Now I see that my editing was REALLY bad. Note to others. Free sites on the Internet have their place and purpose. But learn different more advanced programs. I promise you won’t hate me.




Some where pretty decent. But by all means, I was really bad



I did the crazy eye coloring.... People, DO NOT DO THIS. It makes your kid look like an alien



And vignetting should be...subtle. Ha! NO really. This is BAD!


A few would come out as good enough to be on my wall, But most are still here.... in cyber world




And the family I took yesterday, but this was a LONG LONG time ago!! And we will see where the PAC has gotten me.


* so sorry amy. these were terrible!*

Then I started getting some really good shots. Like these:







And a wedding or two!



And then some great, families!





Some great candids were taken





Then I had a baby and thought I was doing even better than before.






Learned a bit more about big families. But not enough. Oh so not enough



Learned about new families and cold weather.





And now to joining the PAC :


















Back to the family I took when I was just young.



I am so glad to see my work evolving.

 So for all those looking to better your skills come join us at the PAC. We are on Facebook and on G+
We have activities. Shooting lessons, shooting locations and awesome activities with models and people who want to help you learn to be a better photographer.

Thanks PAC and especially thanks to Alex Baird Photography for always being willing to answer all my photography needs and to humor me in my love of Epiphany!

Winner Winner Chicken Dinner!

My giveaway is closed and with Random.org we have a winner. 

Miss Holly Steffen. 

Congrats Holly! We will be getting the fun stuff to you so you and Amy can work together to make your bag!

The things I wish.......

Sometimes I lie awake and think of all the things I wish I had. I wish of the things I could do. The things I would change, fix, redo, do over, you name it. I wish and dream and dream and wish. In the last few weeks there has been LOTS of things in my own personal life that I wish others would understand, or WISH I could explain, WISH I could understand where it is going to lead us. But that answer has yet to  come.


2 blog posts floating around the small world of Special needs moms have been shared and even more shared and I thought I would take a few points and some of them overlap so it might not be exactly the same. And explain each one, and how they belong in my world.

The first article was written a while back and I have kept looking back at it so many times. The other one I am referencing is one that just started circulating.

*And if you finish this post and since it is Mother’s day, we are doing a giveaway from a awesome friend of mine. So PLEASE read and take the time to comment so that we can have an awesome give away!*


I am tired: Even with a goods night sleep and a nap ( Because I have taken and do take naps still when Grayson goes down. I am SURE it is considered lazy and well good for me!) There is something emotionally and physically draining of more than just being their mom. There is always a way more emotional side to parenting Tyler than what I see in parenting Grayson. Their needs are so different, and not just because of age. But because it IS harder. I am doing things for Tyler that I don’t need to do for Grayson because even as a small toddler he has mastered skills that through YEARS of therapy we haven’t mastered or even come close to mastering. It is exhausting.

I am lonely: The visions of play dates and play groups and friends slowly go away after a few years. In the beginning he was like a typical kid. He was little, cute and fun. When emerging skills came for kids, like walking, we were crawling slowly. When it came time for him to go to nursery in our church, he was not able to go because everyone was walking and he was crawling and his walker was “to combersome” in a room of 20 toddlers. It was devastating. People soon stopped calling to have play dates. Then when they were old enough to make their own play dates he never was invited over to play because he was different. So I because my own child's best friend. I miss having friends that were interested in what I do and not interested that as a whole, we can’t do what you all want to do. There is no way to explain to a regular mom, what all day at the hospital is like for 9 appointments to hear that in ten years he will at some point stop walking. Or that he will never talk. The “nevers" go on forever. One article said it was “ like the hoovering point you get with your toddler times that by one more NOT a toddler.” It is like that all the time. Like I said above, Grayson has out mastered several things that Ty isn’t even close. But no worries, he doesn’t get invited to Bday parties, play dates or even to be played with at the playground.

 I have to work harder at my marriage: The divorce rate for a family where there is special needs is 80%. The average American divorce rate is about 50%. Putting the extra effort to make our marriage work has been VERY hard. When we lived in Utah, finding a sitter to take on Extra needs is almost zilch. You can’t ask your parents every week and let’s face it. It takes a lot of work. It takes a lot of work without extra needs. Add the extra needs and it is hard. One of the only things keeping us old folks in love, is that we moved away from our home of Utah, and moved to Arizona where we were given long term care services for our children. Respite is a GOD SEND.

I wish you would stop saying retarded, short bus, and learn to use the handicapped parking spots like adults: You know the saying that you are the only one that can say stuff about our family. That is how I feel about people who make short bus jokes. When you put your kid on one, then you can joke about it. When you are making fun of someone who “should” ride one, you are calling them dumb and handicapped and retarded. To those of us who lovingly send off our babies on a short bus, it hurts our feelings when we hear short bus jokes. Saying the word retard, makes me want to throw a really large thesaurus at your face.

BUT the biggest, when you are dropping off your kids at school, the reason the handicapped parking is RIGHT IN FRONT is because there are people WITH HANDICAPPED STICKERS that need to park there. Don’t park there. It is illegal. Store. Same concept. You might find your small run to the store cost you 350 bucks because some mean head will park behind you and call the police. It is RUDE and terrible to make someone who CAN”T do something have to suffer because you can’t park someplace else.

I want to talk about my child: I can’t even begin to tell you all of the wonderful qualities that my child has. He is smart, funny, insanely honest, sweet, kind, forgiving, understanding, determined, stubborn, messy, crazy, a crappy sleeper, a mean little dude, stubborn, and did I mention stubborn. But there are also things that people see on the outside. they want to know why he walks funny ( he has cerebral palsy) He hates hair cuts because he has had 7 surgeries on his brain and it feels funny. He falls a lot, because he has cerebral palsy. Loud noisy places cause him to have meltdowns because he has sensory processing issues. He has behaviors that are not age appropriate because he is developmentally delayed. He is legally blind. We love him. We do all of those things and let people stare because we are who we are. 

I am human: I am human. I have moments when all of the above issues make me sad. It makes me want to stay in bed all the time. I enjoy my naps and times that I don’t have to deal with being the mom to the issues but long for the times that I get to be the mom of the boy that is all the amazing things. There are so many times that I am DOWN DOWN DOWN and after a little bit, we figure things out and we are doing the best that we can and we go up and keep on going.  We are human. We fail. We thrive, we survive. It is a lot of work to get up in the morning, but we do it. We all go through it. 

There are so many more things I wish people knew about me. That I wish they knew about Tyler. That Wish they knew about Grayson. And how they interact together. That they could see the funny things that Tyler says and does. We love Tyler with all our hearts. Our hearts ache that he has such a trial to bear and we hope and pray that we can do all we have been entrusted to do. 

And for the best part. My good friend Amy from Stiched by Starlight makes custom orders for purses and bags. They are darling, cute and functional. She is offering a bag to a reader with custom fabric of their choice. She is offering a phoebe bag or penny purse.

To enter into the contest please leave a comment on THIS POST. You also need to go visit Amy at Stitched by Starlight and like her page and take a look around. There are many different fabrics that you can choose from. Let us know what you would do with one of the bags listed.

Most importantly, thanks for sticking by us. 1000 posts on here and 8 years of Tyler and I and our antics is a long time. Thanks for sticking around.

Orthopedics- CHECK

Ty has this thing where we make a list, we talk about the list and he “checks” it off.  It is kinda funny to hear him say it, and he even does it when he is all by himself.

Example : “ Mom what are we doing today?”
        Me: “ School, doctors and then home.”
        Ty : “ School- Check, doctors- Check and home- check”

The lists and checking could go on for hours. He loves to do it at the end of the day, when we have a HUGE list to check off.

After our trip to Utah and I was horrified as to how loose his legs were and our appointment with the new physiatrist, I got some opinions of other moms of CP kiddos and decided that we really needed to see a orthopedic doc to make sure we weren’t hurting anything in the long run. And that the end result was what we were looking for.

We made an appointment for the new CP clinic that Dr. S is putting on at PCH. But, what we didn’t know, was that you had to be a established patient. So we got put in the day before the clinic. I was a little disappointed but found that this was the FIRST one!

Dr. S was AMAZING! What makes him so much cooler, is that he has 2 kids with CP. They just turned 16. He has sat in our seat before and he was so easy to ask questions too.

He was concerned about our course of action with persistent phenol. He doesn’t love it. We have found that most don’t and we are kind of on our own. We can’t find a doctor down here that does it and so we do have to go to Utah for it. So we are looking at some other options.

He was concerned that we were not seriously looking at any types of surgeries to help loosen his muscles. But the biggest concern is his ankles. His toes will always be the way they are and they will always be a little deformed but overall he really needs stuff done with his ankles to improve the quality of life and walking.

Another big concern is that we have not ever had xrays of his hips. We did ONCE when he was a baby at Shriner’s but no one has ever mentioned it before. This kind of freaked me out. My friends kiddo had surgery and it did not look pleasant so I was not looking forward to the idea that we overlooked something that is kinda big.  The other big concern was that I was not expecting xrays so I didn’t bring another person to hang out with Grayson. Since they wouldn’t let G stay in there I had to leave Ty alone.

We went to the xray room and Ty climbed right up and talked to the lady and was so so so good. I was a little worried about leaving and stood outside the door waiting for a cry or a scream or something and it never happened. When they came out the door, Ty said mom, that was awesome and I can spell xray. He handed over his sticker and we were done.

His hips are OK. Not perfect, but OK. They don’t think that we will be needing surgery on them any time soon and we are OK. So really the only thing they want me to think about is the Heel surgery. We all have such a different idea of what to do. Every single doctor we have seen in the last 2 months has a different opinion.

We left the appointment feeling pretty empowered. We headed towards Tempe where our dad works so that Ty could go to the beach. We used our stinky diaper plastic bags to gather up a rocks and we had our left over lunch to feed to the birds.

We had a great time. Ty and Grayson chased birds for a while. Dallas was happy to see us. I was able to go to a Relief society activity that was very awesome. So it was a good day.




Good information, good day, great kids.


Very Thankful.

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...

IEP... One Without Tears

Last year our IEP was TERRIBLE. I ended up in tears and refused to sign and left. I ended up doing a visit to a school that was not very much further than our house and his home school. I liked what I saw at that school and know that the state law says that he should go to the closest home school. I was pretty confident when I went back into his IEP. I told them what I expected. The teachers still told me that their recommendation was life skills class. I refused. I wanted him in a mixed classroom.

A few weeks later we got a letter from the district saying that he was going to be BUSSED clear across the county. Literally. He would be on the bus for more than 45 minutes. If he were to have a seizure he would be transported and it would take me 45 minutes or MORE to get to my son. As opposed to the school less than 3 miles from my house. To say I was pissed was an understatement.

Soon our landlords decided to be jerks and so we did a little checking and off we left. Back to a state that we got what he needed. We did some research as to what district we wanted to be in. We were fine with the area we lived in before but I REALLY wanted us to be in Higley district. They were smaller and I felt they were able to offer more. And I was RIGHT!

We didn’t have a redo of our IEP when we moved to Arizona because Ty’s was barely done. So I signed on the dotted line and let them use Utah’s bench marker. We had to change and update stuff throughout the year to work for what Ty actually was at, and I was happy with the changes we made.

IEP rolls around and I get ready to go in. Except I know there will be no tears. His team is amazing. We have made a lot of choices this year and have really gone with him getting an education an actually learning. His “team” last year made me feel like I didn’t know my child and so having someone ( and multiple someones) that truly wants what is best.

SO.. What are we doing next year?

NOTHING!! We are staying and doing exactly what we are doing. OK, we are doing a few things different but I think they are for the better.

So, for the new things.

• We are adding more keyboard training. We are teaching him to type out his sentences instead of trying to put the flashcards into sentences. He can’t use his arms the way he needs to so why are we forcing something that isn’t there and letting him be behind? We won’t, so we will teach him something else.
• He is going to start Cane training. It won’t be immediate that he gets it all down. So it will be a gradual thing. He has to figure out left and right and directions. But he can and does maneuver around his school very well and pretty much on his own. He, apparently, just walks around and through everyone where he says "excuse me" and keeps going. So his O & M is going to be in full swing next year. 
• He struggles a little in math and in money especially. Money is so visual, that he has a hard time not manipulating whoever is helping him. He is GOOD. So we have an activity every night of coins and what is it. (I think he also gets a little confused because his brothers name is the same as a coin! That is the only one he gets right!)

He will still be in the cross category class next year and he will be ( hopefully) in the same class. He LOVES his school and his class. He goes to all the specials, in regular but he gets to play with the same ten people. He likes his little world. I like his little world. 

A service Project to Help Heal

A week or so before we left for Utah I was able to perform a service for a very sweet family that I had randomly run into. There as a link from my blog to hers and I followed it.  Then I saw a bunch of random stuff for fundraisers after I found her blog.

Jennie ( the mom) was diagnosed with placenta previa AND placenta acreta. Not only was she at risk for losing her son, this was her ONLY son. She has 5 girls. She was put on hospital bed rest for a LONG time. ( I think 8 weeks)

She knew she would deliver early and she did. Her son was in the NICU. I offered to take some NICU photos. For those that know me, I am NOT the best at the NICU and was not sure what possessed me to take them. But it was so healing to me.  I realized that I can do hard things

Here are some of my favorite photos.

*Disclaimer: PLEASE do not steal these photos. They belong to me and Jennie. If you want to use them for any reason, please contact me at Nancy.brown05@gmail.com*

The last one is one of my favorites because technology REALLY did improve this families ability to enjoy their little man. The dad was home with his kids and they all had some kind of bug and the IPAD was able to let them all see what was going on.

This was such a great experience for me and will probably add it to my list of things to offer. I hope you enjoy.

Oh and one a NICU mom always one. It almost felt like I was back in a time and I knew what I needed to do. I think they turned out pretty decent. You?


Next up: IEP and DDD. what a LONG day!