November Already?!

Hello!!


Wow, I can't believe how fast this year is going by. These past few months have been so extremely busy! Things such as; camping, museums, the fair, school activities, birthdays, baby showers, and babies to just name a few! We even did a Breaking Bad tour of locations which I might do a separate blog post about. October was such a fun month full of all kinds of activities. My friends and I did a ghost tour here in Old Town which was creepy and fun. We went to the pumpkin patch as a family with our friends and the kids had a blast. We also went to Balloon Fiesta and that is always a good time. Nathan's brother Andy was in town and it was great to have him go to the fiesta with us. Then of course there's all the Halloween parties, zoo boo, pumpkin carving, and trick-or-treating! Lyla was Princess Sofia the First, London was a dragon, Nathan was a king and I was the Queen (we also did a bee and bee catcher for another party). We always love a theme!

London and Lyla are both in school. Lyla LOVES her new preschool and has made a lot of friends and learned a lot. One of the things she's learned is how to spell! Other than her name, she has a few small words she knows how to spell all on her own. Her teachers are really great and we're very happy that we decided to go with Kids Express. London is doing so well in school. He's growing and maturing so much! He has dozens of words he uses consistently now, and if you ask him "Can you say ___" he will almost always attempt what you ask. He's so proud of himself and it's a joy to watch. He also started singing songs all the way through which is just so sweet. I'll post a video or two on his progress.

My sister-in-law had her baby on September 29th, Cameron Michael Kinsky, 7lbs 2oz and he's so adorable!! Em, Chris and Cam are all doing very well. I made my first blanket for Cam and I was really happy with the way it turned out. I would have never thought I'd be able to create a big baby blanket on my own with my minimal knowledge of sewing, but it actually wasn't as hard as I thought it'd be! Here's a few pictures of it:

And here's our nephew Cameron!!

Nathan's doing well at work. There's been a lot of unnecessary drama which has gotten him down at times, but overall he loves his job.  There are ways it could be a lot better, so we are praying for his situation.


I'm still happy at home. Now that both London and Lyla are in preschool, I have about 2.5 hours to myself every Mon, Tues and Wed morning. The time goes QUICK, but I'm not complaining! I usually catch up on emails, clean, work out, have some spiritual time, work on my ancestry stuff, or just take a minute to watch some TV and relax. It's been really nice. I did a lot of acting/extras work in June, July, August and September. Then I just got burnt out on it. I've had dozens of calls and emails since September to come work on a movie, an NBC show that's filming here, a George Lopez show, etc. and for some reason I haven't accepted anything. I've turned them all down and I'm not exactly sure why. All I can say is that I guess since the kids went to school I've enjoyed just taking time out of life to relax and take things slow. When you work as an extra, it's LONG days and sometimes graveyard shifts and I don't see the kids all day. I also have to get a sitter which isn't always easy. I'll probably start doing it again in a few months - maybe after the holidays when things slow down again.


Nathan and I got into a small group through our church and we're happy we did. It's really great to have friends that you can relate to that are living their life with the same intent and purpose as us. We all have our faults, our struggles, and our weaknesses and it's awesome to have people to talk to and help keep accountable while praying with each other and learning and growing towards God. I'm really finding that the more I lean on God and focus my energy on him and the things of his kingdom rather than the things of this world, I'm so much happier and I feel like I can face anything and that I'm living my life with purpose. It makes me a better mother, wife, friend, daughter and person in general.



I'm looking forward to November, it should be a good month. Next Saturday our family is serving a mission at Galloping Grace in Rio Rancho. That will be really rewarding and the kids will enjoy seeing all the animals. Then in a couple of weeks it's Nathan's birthday and I'm planning a little something for him. ;)


Since it's November, what better way to end my rant than with mentioning something I'm thankful for. I'm so thankful for my parents. They are always there when I need them. They have supported Nathan and I in tough times, they watch the kids whenever I ask, they love us, pray for us, and are just always there when I/we need them. I can't even imagine not having them in our lives. They are so positive and uplifting. Whenever I'm having a bad day, my mom knows exactly what to say to make it better. She's always been my biggest fan - cheering me on and lifting me up everyday. I love my parents so much and cannot even stress how thankful I am to have them in my life.


OK - sorry I rambled! More updates to follow!

General Update

London and Lyla will both be starting school this month. London is continuing in his program for another year and Lyla is starting preschool! She is beyond excited. She'll only be going three days a week for half the day, but it will be so fun for her to learn and grow and make new friends.
I'm looking forward to having a few free hours during the week to myself! I may even get in a nap! haha...


Nathan's still working in the same place. He's pretty happy and it's going well. I've been trying to persuade him to go for his PhD. I think he will if his work will pay for it. He's so good at school, he might as well go all the way!



I'm doing well at home with the kids. I can't even explain how happy I am that I get to stay home with them. We do a lot of activities together and have a great time learning and playing. In my spare time I love to work on my ancestry tree. I've gotten pretty far on some parts but others are still missing. It's been so fun and I love to learn about my family's history. My Uncle Chuck kindly sent me a box of my Grandpa's photo albums and various other documents. I've been working on scanning those in the computer and filling in the pieces to my tree. My Grandma on my mom's side also gave me some pictures and other books and documents. I love having these items to take care of and preserve - my family's ancestry is very important to me.
I've also been learning how to sew. That's been interesting! It's not my strong suit, but thankfully Nathan has been able to help.


My sister-in-law Emily is pregnant with a boy, due in October, and Nathan and I can't wait to be an Aunt and Uncle again! It will be our first time having a nephew! I am so beyond excited!


I don't know if I've ever mentioned our church before and if I haven't I can't imagine why because we really love it. It's called Sagebrush and it's on the west side. The pastor is Todd Cook, who Nathan and I had a youth pastor while we went to Hoffmantown throughout middle and high school. The church is really awesome and has campuses all over the state and the world! My parents are also very involved in the church. I feel so lucky to have such a wonderful place to go to feed my soul. They do a lot of serving in the community and I've been able to be a part of a few of those missions as well. It's been so rewarding and a lot of fun.



That's about all the news here! 

London Update: Talking!!!!!

So when I posted about London in January he wasn't talking. I'm SO HAPPY TO SAY that London says SO many words now! Even a couple sentences here and there!!!! The words started really flowing a couple of months ago and have just continued to grow. And I mean, clear words not just babble anymore! I've been trying to get video of it, but it's still kind of random and hard to capture on film! I did get a little bit though and I'll post what I have.

This is very exciting for me because a small part of me feared that he would never talk. So far I've heard "cookie", "star", "goodbye", "blue", "green", "black", "two", "five", "eight", "nine", actually most of his numbers, some of his letters, and a lot of other words in general! He's said "Yo Gabba Gabba" and "Cool Tricks Cool Tricks". His teachers have heard a lot of words too, and everyone is just beyond excited for him. We really cheer and give him positive feedback for every word that we hear. If I point to an object, like a car, he'll say "car beep beep"! It's just so awesome!!!!!!! The tears are coming to my eyes because this is just a really huge milestone for all of us and I couldn't be more proud of him and how hard he's worked!

Follow-Up Post: 10 Things Every Child with Autism Wishes You Knew

I read this a while ago, and Nathan and I really enjoyed it. Some of it does not pertain to London, but I still think it's a good read.

Here are ten things every child with autism wishes you knew:

1) I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

2) My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me: My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become over-stimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing -- the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

3) Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

4) I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.” Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

5) Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6) Because language is so difficult for me, I am very visually oriented. Please show m how to do something rather than just tell me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. A visual schedule is extre helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, and helps me manage my time and meet your expectations. I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

7) Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

8) Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”

9) Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums, or whatever you want to call them, are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log, noting times, settings, people, activities. A pattern may emerge. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders, and gastrointestinal problems can all have profound effects on behavior.

10) Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too. The answer to Alzheimer’s, the enigma of extraterrestrial life -- what future achievements from today’s children with autism, children like me, lie ahead? All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.

London and Autism

Hello friends and family!

Gosh, I just don't keep up this blog like I used to. I hope everyone had a wonderful holiday season - we sure did!

I've been avoiding talking about London and his diagnosis for some time. It's not something that I feel comfortable uncovering to everyone. It's a deeply emotional subject which has really affected me and Nathan. But I feel the need to write this post, whether or not I end up publishing it to the blog.

When London was about 15 months old I started researching some things on the internet. I was curious as to why he was a little behind Lyla developmentally. Everyone just kept telling me that boys develop slower. He didn't have any words, and he still wasn't walking. The word "autism" kept showing up. It scared me to death. I would mentally push it out of mind and keep researching hoping that it was just something else that wasn't so "big". But my searches kept coming back to that same word. I finally filled out this form called an MCHAT online to find that London had a couple of the "red flags" as they call them for autism.

I brought up my concerns to our Pediatrician. He suggested London go to early intervention to help with his talking. He didn't feel London should be diagnosed as autistic or anything yet being that he was so young. So, a few months later London started walking. A few months after that, when he was close to 2 he still wasn't talking, so he started going to Alta Mira for early intervention.

When he got to Alta Mira, they did a lot of evaluations. We started to realize that it wasn't just the lack of talking that was an issue. He had some problems with fine motor skills, pointing and following points, and I found that he is what they call a "sensory seeker". Which is why he throws things a lot, holds pillows tight, chews on everything, and loves swinging and jumping. He doesn't have SPD (Sensory Processing Disorder), he just seeks sensory a bit more than most kids.

With all the evaluations happening, it was clear there was a bigger issue than the lack of words.

He made some nice improvements at Alta Mira. He learned how to do big piece puzzles, focused his attention for longer periods of time, followed instructions, and overall just really had fun there.

As he was nearing 3 years old, he was about to age out of the program at Alta Mira. They suggested that we get him further evaluated through APS (Albuquerque Public Schools) to continue early intervention.

We took him to an educational diagnostician through APS in May of 2012. They ran a series of tests, took our information, we filled out a lot of paperwork and then the diagnosis was given. London is affected by the autism spectrum disorder, or ASD.

The call came that next morning in May and I felt like a knife had been stabbed into my chest. I went into the bathroom, shut the door, and just cried. And cried. And cried. I felt like all my hopes and dreams for London were just thrown away. I had so much fear. Fear for his future and the struggles he will face. Fear of what will come of this. So many things ran through my mind. Including denial.

The thing about London is, he is very sociable. That's one thing that a lot of kids affected by autism lack. But London will look you in the eyes, laugh at your jokes, wants to play with you, and is just overall very interactive. He loves people. He loves to play with people. He loves to be cuddled, held, touched, squeezed, and tickled. He is also very, very smart. Not to say children with autism aren't smart - most grow up to be a genius of some sort. He knew all his numbers, shapes, colors, and letters long before Lyla did. He has songs and books memorized word to word, cover to cover. I'm pretty sure he knows more about the iPad and iPhone and how to work it than I do.

So it was hard for us to accept that what they were saying about him was the absolute truth.

But the more and more I looked at the signs, and how this "disorder" has affected him, the more we have had to come to grips with it.

He does have some of the more classic signs. He flaps his arms sometimes, and makes different finger movements in front of his face. And of course there's the no talking. That's not really directly related, it's more of a lack of self awareness problem. But that tends to go hand in hand with autism as well. He also never followed points (but he does now), and has always played with toys repetitively. Sometimes he has a hard time with transitioning from one thing to another. He's getting better with that too. And he was never interested in pretend/imaginative play or playing with other children.

He is happy though. Boy, is he happy. He has always been such a happy child and he just loves to smile and laugh. His happiness is contagious. He hardly ever throws a tantrum or gets mad about things. When he does, it's very short lived.

Nathan and I really struggled with whether or not to even tell our families. Our biggest fear was that people would start treating him differently. That they would think of him differently or pity him in some way. I wanted to keep their relationships with him the way they were. But the burden was too big to bear. My mom came over one afternoon and I just started bawling. I couldn't hold it in, and I realized that I needed their support. And London needed their support. Of course they haven't treated him any different and love him just the same.

I was also worried that this new diagnosis would label him forever. And once he entered the special education part of APS that he'll be stuck there forever. That this diagnosis would somehow define him. It doesn't. It's not who he is. He just happens to be on that huge spectrum. And thankfully it's on the mild end.

I've also struggled with a lot of guilt. I racked and racked my brain trying to think of anything I might have possibly done to make him this way. Did I not eat enough veggies when I was pregnant? Drink enough water? Exercise enough? Too much? Was it the vaccinations he had at his well child check ups? I have researched and gone over everything I can. And the thing is, there is no answer. No one knows what causes this. And Lyla. She is not affected at all. That makes me feel a bit better and maybe that it's not my fault. I've had trouble with letting that guilt go, but I can't beat myself up forever with something I have no control over.

So, we are doing everything we can to help London. We have taken classes. We have enrolled him in an autistic specific preschool which has a speech therapist and an occupational therapist that he works with every week. He goes 5 days a week for half the day. There are 9 kids in the class - all boys. We are very involved and meet with the teachers and therapists often. We bring home what they are teaching at school and do many of the same techniques. The teachers brag on London and always tell us how great he's doing. He's the youngest one in the class but they say they forget he is 3 because he can do all the same things the older kids do.

The good news is that he's doing great. He is growing by leaps and bounds. He does wonderful at the preschool and is meeting so many goals. He's still not talking clear words, only babbles and sounds, but he is trying. He is trying to say words. He wants to talk, he really does. But he does have his own ways of communicating. He does a lot of sign language. He uses a picture book called PECS. And of course there's the usual tugging us around to the different things he wants.

I have to say, I'm so thankful for our families. They love him just the same, and are willing to try the techniques we learn and are so patient with him. Not only are they great with him, but they are supportive to us as well. My mom watched Lyla for every single appointment I had to take London to (which was MANY). We just couldn't do all this without our families.

I feel blessed to be the ones that get to care and love London. He could have gone to anyone in this world, but God sent him to us. I feel chosen to protect him, and be his advocate, and his voice when he doesn't have one. I will always stand up for him, and always love him and no diagnosis would ever change that. And Lyla will be his protector as well, as she already is. She loves her "Lunnie Bear".

So, he's a little different. Isn't everyone? He will have a good life, we'll be sure of it. I try to remember all the blessings we have, and in all the ways he's NOT affected by this, and there are many.

It feels good to get this off my chest, even as emotional as I am about it all. Thanks for reading, and sorry it was so long. Love you all!!

Tara

** I wanted to add something... today's world is very quick to slap a label on children that seem to have some sort of "issue". With there being about 1 in 4 boys affected with autism, it could be easy to say there is an over diagnosis happening. I can't say I'm happy about him being labeled. In fact when people that aren't my close friends and family ask me questions about his preschool, I usually just address the fact that he is having trouble talking and I don't even use the word autism. Like I said, it doesn't define who he is. That's just the current path we are on and we will work continuously to either address it as "autism" or to address it as his own special needs. The most important thing for me is not how/if he is labeled, but how we can help him grow in the best way possible.