Monday, June 10, 2013

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.

Tuesday, January 15, 2013

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.

Sunday, August 19, 2012

Hello!

Hello there! Anyone still reading this? Hehe...

Sorry I haven't posted since January!

So, things that have happened since then are:

All the regular holiday fun. It's probably easiest to just be friends with me or Nathan on facebook so you can keep up with all the pictures I post!

In May, some of my and Dana's girlfriends took a trip to Vegas for Dana's birthday. That was so much fun.

In June we celebrated the twins 3rd Birthday with an Under the Sea pool party hosted at our house. That was a great time.

My parents helped Nathan and I get our pool restored, renewed and up and running! It's gorgeous and we've all really enjoyed having it this hot summer! Lyla loves to swim, and London is getting used to the idea. He's not a big fan of the cold water!

We had a great 4th of July - Lyla got really into the fireworks and loved doing the sparklers. We also walked in the parade at Dana's neighborhood and everyone had a lovely time.

Here we are in August! London is done with his early intervention program at Alta Mira. Not sure if I've mentioned it before, but he was going there for some therapy to help him to talk. He has really grown in the amount of signs he can do. He's also really good at communicating as far as what he wants or needs. He's now in a program through APS which is an early intervention preschool. He just started this past Friday the 17th. He goes Monday-Friday 8-12. He had a great first day and I really like the teacher. She also has two EA's, with only 5 kids total in the class. He'll get a lot of attention and hopefully will just blossom in his vocabulary!

Lyla is on a waiting list to get into a preschool near us at Hoffmantown Church. Hopefully she'll get in soon! I know she would love it. She would go only two days a week.

I'm still in school and hopefully about to take my last semester this fall. I'm looking to graduate either in the fall or winter. It hasn't been the easiest, but it will be so worth it to finally have my degree!

Nathan is still at Sandia and doing great. He loves his job.

Overall, things are going really good for us! Here are some recent pictures that we had done in June.

Wednesday, January 4, 2012

Happy New Year and a Recap of Month's Passed

First of all, Happy New Year!! I'm excited to start a new year. New beginnings. Fresh starts. Fragmented sentences. :) Hehehe. I hope everyone had a great 2011 and here's looking forward to 2012!

It's been a while since I posted so I'll try and do a semi quick recap! We had a very busy summer. In July, Nathan and I went to San Diego ComicCon and that was so much fun. It was the fist time we left the kids and we went for a week. It was soooo hard for me to leave them but my parents, Nathan's parents and sister, and my sister all took turns taking care of them and overall it went fine. We missed them SO much but we had a blast!

I went to the Vampire Diaries panel!

Nathan was having a great time.

Ashley Greene from Twilight signed my shirt!

We met Seth Green

Nathan and I did some "cosplay". I was Emma Frost and he was Mimic.

Then in August we went with my family to Indiana. That was a rough trip being on a few different airplanes with two 2 year olds. Overall they did well, but there were a couple freak outs from both the kids. But they loved the hotel and the pool and just getting out and doing things we don't usually do at home. Plus they traveled with their cousins, Lexi and Ella and so that helped a lot. We saw a lot of my family and I was really glad about that. They met their great-grandma's which was exciting for everyone. I'm so glad they did because a few months later my Grandma Gould passed away. So making that trip has now become so precious to me and I can't express how glad I am that we went.






In September Nathan's sister Emily got married and Nathan and I were both in the wedding. It was beautiful and we're very happy for Emily and Chris!



I made the leap and registered for classes in the fall. I took two business classes and an astronomy class and I really enjoyed it! It was so nice to get out and have that time for myself learning about something that I'm interested in, at the same time working towards finishing my degree. It was challenging to balance being a stay-at-home mom of two 2.5 year old toddlers with school and all its quizzes, tests, mid-terms, homework, and finals. But I managed to do it, and do it well if I do say so myself. My final grades were 3 A's! My mom and my mother-in-law took turns watching the kids while I was in school and I owe them so much for all their help! I really couldn't do it without my family's support!


Halloween was a ton of fun as usual. The whole family dressed up as the Wizard of Oz for Halloween and it was a huge hit, everyone loved it! We went to the fall carnival at Calvary and everyone had a nice time. Lyla LOVED Trick or Treating and was very excited about getting candy at all the houses! London was more interested in running down the street. :)




For Thanksgiving my sister, dad, and I ran the Turkey Trek 5K. It was my first 5K ever and boy was it rough! I'm glad we did it though, overall it was a fun time. After our run we had a late lunch at my sister's house and we all stuffed ourselves silly.






The holidays were lovely and it was such a joy having Christmas with London and Lyla and seeing everything as exciting and new as they see it. They were so excited about everything! Lyla loved looking at all the "kiss kiss lights". She would yell "Look mama! Look dada! Up there, over there! Kiss kiss lights!! They're so pretty!" She also said phrases like "Holy holy moly!" and "I'm so excited!", "blue ones! red ones! I see purple! Santa!". Her excitement is so contagious and we all really got into looking at all the pretty lights.






I took them to the mall to see Santa and they were actually pretty good about it. London started crying a little when we put them on Santa's lap, but not too bad. London would wimper and then stop to look at Santa, and then wimper again. It was kind of funny how he was checking to make sure what he was sad about. Lyla told Santa "I'd like pink presents please, Santa!" and he laughed and said OK and gave them both candy canes which they devoured in the car on the way home.


They also loved our "kiss kiss tee" and London and Lyla both helped me decorate it. Lyla would take the gentle approach and place the ornament nicely on the tree with quite precision. London would take an ornament crank his arm back as far as he could and then throw it as hard as possible and wherever it landed, so be it. :) They are so different and make us laugh every day.

Christmas morning was a lot of fun. They saw the crumbs of the cookies and rings of the milk that Santa left behind and there lay all the presents under the Christmas tree. They ran over to open them and pretty much loved everything they got. After we did our presents home as a family, we went to my parents house to do presents with them. After that we went to Nathan's family's house to do presents with them! It was a very exciting and fast paced morning. At noon we had lunch at my sister's house, then we came home to take a long winter's nap.














After Christmas I celebrated my 33rd birthday at the Melting Pot with some friends and then the next night I went to dinner with my family to California Pizza Kitchen. It was a really nice birthday.


We also had birthday parties, Halloween parties, pumpkin patch, Balloon Fiesta, a trip to Scottsdale, Halloween parties, holiday parties, sugar cookie making, River of Lights, and a few other things that happened, but I just don't have the time to write about everything!
As for London and Lyla:
Some of you know that London isn't really talking yet, so we've been taking advantage of early intervention through Alta Mira. He's doing well with it and making small steps forward. We've had his hearing tested a few times just to rule that out as a possible cause for not talking. Over the past few months, his left ear kept failing when the pitch hit a lower frequency. Well, I pushed to have the test one more time and his left ear passed! So, he can hear perfect in both ears. It's nice to have that chapter closed. He will continue having monthly visits with the therapist, and he goes every Monday to work with an occupational therapist and a speech therapist. He loves going because they have so many fun things for him to play on and to climb and jump on. He still loves books and toys, but lately he's been really into playing basketball! It's his favorite and he's so good at making baskets! He's so funny and sweet and almost always happy. He's such a joy to be around!
Lyla is doing great, she is talking enough for the both of them. :) She loves playing pretend, coloring and painting, singing songs (ABC's, Twinkle Twinkle) and playing instruments. She's very creative and SO smart! She has the sweetest personality and is really good with her manners. She also just became potty trained! She's great at using the potty and telling me or daddy when she needs to go. We're so proud of her!
I just registered for spring classes, so I'm excited for school to start again. The sooner I get these classes done, the sooner I get my degree!
Nathan is doing great at work. He has a work trip coming up in a couple months. They keep him busy, but he enjoys it.
Sorry this post ended up being so long, I guess I had a lot of updates to share! :) I'll try to keep the posts more frequent!

About Us

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Albuquerque, NM, United States
I am a proud mother of twins, a wife, and an 'all things girly' enthusiast. www.pinupkitt3n.blogspot.com will be more about me and my personal hobbies/interests; vintage, shopping, baking, dancing, makeup, etc. If you'd like a glimpse into my family life, please visit my other blog - www.elliottwins.blogspot.com. :)