Friday, April 11, 2014

Blog #8: - Wrapping up our Autism Awareness blog series! by Diana Patterson

First and foremost, we want to thank you for taking the time to read our blogs. Jenifer and I hope you enjoyed our writing. The idea of bringing autism awareness to Star Academy was exciting and a little nerve wrecking for the both of us. The support has been amazing! We hope that everyone took something from our information and personal stories.  

1 in 68 is the current statistic of children that fall on the autism spectrum. 1 in 48 boys to 1 in 189 girls are diagnosed in the U.S. Autism is a neurological disorder that causes, in varying degrees, difficulties in the following: verbal and nonverbal communication, social interactions, and repetitive behavior.  The exact cause of autism is still being researched, however there are possible causes including genetics, the environment or a combination of the two.  Autism treatment is available and early intervention is key for kids on the spectrum.  Please take some time to watch the two minute video below.  It’s based off the book Carly’s Voice; Carly invites you to experience Autism.   

 Please feel free to contact either one of us with any questions regarding autism.  Please do not feel embarrassed or afraid to approach us.  We encourage anyone who is curious about the disorder, raising children on the spectrum, not sure what to tell someone who just had a child diagnosed, etc. to come and talk to us.  We would much rather have someone ask questions than to judge from afar because they don’t know the real story or truly understand the situation.  Autismspeaks.org also provides tool kits for friends and family.  These tool kits give information about the diagnosis and  and how to show support.  Click here to be redirected.

Lastly, we want to stress to everyone how much being educated about the disorder will lead to a better understanding and greater acceptance of all people with autism, as well as other differences or disabilities.  Our goal was to educate, in a general overview of a very complicated disorder, in order for you, the families of Star Academy, to then pass the information on to your children, in a way that you feel is appropriate, since acceptance and inclusion of everyone is such an important concept that needs to be taught to our children.  Bullying in this country has grown to outrageous heights.  If we can teach the importance of accepting everyone, differences and all, while children are young, hopefully we can prevent bullying in the future.

We plan to come full force next year, April of 2015, when Autism Awareness Month comes around again, with more fun and information.  BE READY!!!

Thank you for reading!!

Jenifer’s Contact Info:  jeniferpearsall@yahoo.com
Diana's Contact Info: dscastaneda@gmail.com

Tuesday, April 8, 2014

Blog #7 - A day in the life of Eli by Diana Patterson

If you’re able to log on to a computer, navigate to this webpage, and read this blog; chances are it’s been a while since you were two years old. Okay, okay, I’ll speak for myself I don’t want to upset anyone.  If you’re like me, remembering what life was like at two might be a little hard.  I’ve included links at the end of the post to a what a typical day of a two year old looks like. For Eli, life since his diagnosis is completely different.  
Up until three months ago Eli would wake up multiple times a night.  He would always wake up crying at 6am on the dot.  Everyday the same thing, it would take two hours to put him to sleep at night. Then he would wake up at 2am and 4am. I tried different things in hopes that he would just sleep, wake up and lay in his bed till he heard someone wake up.  I was told by another therapist that occupational therapy would be beneficial for sleep.  Working with the OT we discovered that his body wasn’t self regulating so he needed to skip the nap during the day and light heavy work after he’s done with therapy to keep him going till he’s really tired and ready for bed at 8pm. This little adjustment has made a world of difference in Eli’s daily life.  The lack of sleep was creating other issues. Not to mention that if he’s not sleeping I’m not sleeping. That was not fun!

Nowadays Eli sleeps all night, wakes up, and on some days the hubby and I are awaken by his wonderful singing, counting or even whining. IT’S AMAZING!! I’m so relieved we have conquered this obstacle. Anyhow, he’s usually up by 6:30 am.  I come to get him and we head downstairs for some breakfast. Eli likes to count each step he takes as he’s walking down the stairs.  My poor husband is usually awaken by a toddler counting at the top of his lungs.   One of our next goals is to teach him what it means to quiet down.  So hopefully that gets better soon.
Eli decides what he wants by pulling my hand and saying “come” takes me to the pantry and says “open” then he points to the candy jar and says “candy?” Something so simple as pointing does wonders for communication.  When Eli could not point he would climb the pantry shelves to get what he wanted.  He often scared the living daylights out of me when I would turn around and see him on the highest counter or shelf.  His determination is very inspiring and frightening all at the same time.  Breakfast is pretty smooth now. He doesn’t get candy for breakfast but that doesn’t stop him from asking. Hey, who can blame him, I’m sure if he asks the right person he’ll get it one day.  I won’t mention any names.  When the girls are ready we all get in the car and head to school.  We drop the girls off and rush back home for therapy which begins at 8am.

We let in our morning therapist and go upstairs to Eli’s room to get him dressed. Getting dressed is one of our current goals.  I pull out his outfit from the closet, new diaper, wipes, lotion and socks.  Typically by the age of three kiddos are dressing themselves and picking out their own outfits. That’s why you see little girls with sweatpants, tutus over the sweatpants, rain boots and a pink cardigan at a grocery store.  Kiddos at 2 ½ to three years old are becoming independent, know what they like and want to do mostly everything themselves. In this case, Eli will work on getting dressed every morning until eventually he can take his pj’s off and put on a new outfit.  This process requires focus, planning, problem solving so sometimes it can take months to master this skill.  Eli is making progress but focusing seems to be the toughest for him.  Once he’s dressed I leave and they continue working on his current goals until 9:30am.
At 9:30am Eli’s ABA therapist leaves and depending on the day of the week one of these three will show up for an hour: occupational therapist, speech therapist or developmental therapist. Then at 10:30 his ABA begins and ends at 4pm with a lunch break from 12-2pm.  At 2 ½  years old my baby boy is working everyday, six hours a day for 30 hours a week.  That is as much as, or a little more than, a typical kindergartener at age six! It took me a while to be okay with the idea of having my baby working all day long.  I mean when he first started he was just a little over two!  He should be sleeping in, having playdates, going to the library, going to the park.  Having fun, you know, like a two year old. I knew I needed to face reality and get with the program. The difference between Eli and a “typical” kid his age is that all the things that come easy to a “typical” kid is not easy for Eli so he has to spend all this extra time trying to catch up.  Eli needs to work hard now so he can eventually be at the same place the other kids are.

In seven short months Eli has made a HUGE improvement. He is a fast learner he can count to 20, knows some of his colors, and his drawing is so impressive!  I was fortunate enough to find the MIND institute where our family qualified and was chosen to participate in a study that will change what we know about the different types of teaching methods for kids on the spectrum.  I have the best of the best working with us to help Eli meet his goals and help him be a part of the community.  I won the ABA Therapy LOTTO!!!!  YAY!!!   

Thanks for joining me today and letting me share my story.  Please come back tomorrow and end the series with us as we share our final thoughts.  

A few links on a day in the life of a typical two year old:

Monday, April 7, 2014

Blog #6 - Diana’s Story: Learning about Eli’s Diagnosis by Diana Patterson

Diana Patterson is a stay at home mom of a 12 year old step daughter, seven year old little girl and two year old son. Diana and her family have been a part of the NCS community since 2011. Prior to staying at home Diana worked in the accounting industry.

My husband and I decided to have a baby in 2009. We tried for about eight months and had no result. We then decided to stop trying, mostly, because I was afraid of seeing the word negative month after month. A few months passed and life was back to normal. One month, I was scheduled to pick up my prescription but kept forgetting to pick it up. Eventually, so many days had passed that I thought to myself “What does it even matter? Nothing is going to happen. I’ll just get it later.” The next month I decided I was going to pick up my prescription that was waiting for me at the pharmacy. Something told me to take a test. Just in case, plus, why not? I bought those puppies in bulk, I might as well use them. Then BAM! Two little pink lines are showing! I could not believe my eyes. HA! Just when I thought I had it all figured out life slaps me in the face and reminds me that I’m not in control. Damian and I were so excited! We each had a daughter from a previous relationship; so having a baby together meant a lot to us.

 My pregnancy was easy breezy, nothing out of the ordinary. Forty-one weeks later our baby boy was here! Everything was going just as expected. Eli was babbling, sitting up, crawling, smiling, and looking at us. He went to all of his check ups and had all of his shots as scheduled. We were so excited when he started walking at 10 months. That was a turning point, once he started walking my life became more difficult. He was climbing everything and anything. My living room was reconfigured almost every week with hopes to keep him contained so I could get dinner ready or do some cleaning. Not a chance! I nicknamed Eli “Houdini” he always found a way to get out of my tetris-like furniture layout.

 He never played with his toys. Eli used his toys as step stools in efforts to climb onto something higher. I could not simply tell him no; he never complied to any of my verbal demands. My only way of keeping him from climbing was by putting on his favorite movie Happy Feet he loooooved that movie like no other. That is until we discovered Rio. One day I thought to myself that’s pretty strange that he can actually be entertained by this hour long movie. I knew that it wasn’t normal but I didn’t question it. When the movie came on he would bounce up and down while flapping his hands. He always showed joy; he was a happy baby. He was very attached to me but he never cried for me when I left the room. He was also very attached to my mother in law and my stepdaughter. However, the connection with my husband was not what I thought it was going to be. He didn’t show interest in my husband. I could tell it was hard for my husband. I wanted that for my husband. I wanted that more than anything in the world.

By the time he was 18 months old he still was not sleeping through the night he actually would wake up two sometimes three times a night. I was always exhausted! At this point he was tall enough to reach the door handles and see above countertops and tables. Which of course made his climbing worse. I could not take my eyes off of him. I heard that boys were a lot of work and were daredevils but I knew Eli was on the next level. He learned to unlock doors at such an early age. He has an amazing ability to problem solve. I couldn’t take him to story time or a birthday party. All he wanted to do was use my keys to try to unlock a door. If he couldn’t do that then he wanted to leave or get into something he was not supposed to be getting into. I knew he was very smart. Which is why I thought the only thing that was missing is communication. I remember getting frustrated when I would call out his name over and over and over. He would rarely respond. Eventually I made up my mind and assumed he was just ignoring me. I stopped asking him to do things. I knew that I would get a better response from him if I just went over there and physically made him do what I wanted to do. In hindsight, there were a lot of red flags I just wasn’t putting the pieces together properly.

 Finally at his two year check up, as I stated before, I mentioned to my pediatrician that my mother in law wanted Eli’s hearing checked because she had never seen him become startled. He did not hesitate to put in the referral and gave me the number to the local regional center to be evaluated for speech therapy. By the next month, a coordinator from the regional center who deals with infants and toddlers came to our house to talk about Eli. A speech therapist came along with her as well. They brought in some toys, blocks, books, simple shape puzzle, baby doll. They watched him play with all the items and asked a lot of questions. Eli went to sit on the lap of the speech therapist but instead of simply plopping himself on her lap he placed his feet on her lap first and inched his way up to her lap. They then began to ask me about that behavior. I mentioned that he often did that along with other things like trying to climb the stairs by laying at the landing and trying to also inch his way up the stairs. He always slid down the slides head first. Then the coordinator and therapist continued their tests.

At the end of the meeting they let me know that Eli had a language delay. He had mastered the skills a six month old would typically have. He had some skills in the nine month category with some skills in the 12 to 24 month category. The coordinator also said that he did not perform a “give and take” during the testing. I was confused by that so I asked them to elaborate. She said that when the speech therapist requested something he was holding, Eli did not hand the item to her. The coordinator then said that there were some early signs of what could possibly be Autism. I was kneeling on the floor and at that moment. I stood up and excused myself out of the living room. I could not believe what I was hearing. It all just started making sense. So many emotions, so many thoughts, so much going on in my head. All I could do was cry… My husband came over and held me. Told me that everything was going to be okay and re-assured me that we would do everything possible to help him.

The next step was to see a psychologist. Our appointment was set for August 6th 2013. For two weeks straight I cried when my husband was away. Mostly because I didn’t want to make up my mind about what was going on. I didn’t want my husband to think I wasn’t strong. Even though, my heart knew. I did my own research. I wanted to know what I did wrong. Was it something during my pregnancy? Did he watch too much TV? Everything I read was supporting this gut feeling of mine. Just like Jenifer, I too, began to mourn. I finally felt at peace when I came across a video posted on youtube titled “when one twin has autism.” That was my ah-ha moment. This was out of my control. There’s nothing I could have done differently. The parents on this video had twins and only one of the twins has Autism. These twins were in the same uterus and exposed to the same environment. I truly cannot blame myself. I wiped the tears off. Stopped feeling sorry for myself and decided to take this thing called Autism head on. 

Thanks for reading! Please come back tomorrow and learn about a day in the life of Eli.

Sunday, April 6, 2014

Blog # 5 – A Day in the Life of Emma Today by guest blogger Jenifer Pearsall

Jenifer Pearsall is a parent of a first grade student at Star Academy as well as a nine-year-old daughter with autism.  She has a Bachelor of Science degree in Speech Pathology and Audiology as well as a multiple-subject teaching credential.  She has taught elementary school as well as assisted in various preschool programs.  Currently, she is a stay-at-home mom who keeps busy with the house, kids, one dog, one cat and all of the chaos that it brings!  She is passionate about autism awareness and educating others about the disorder.  In her free time, Jenifer enjoys reading, baking, party planning and playing the Wii with her husband and girls.  Jenifer also blogs at https://www.facebook.com/MyAuSomelyCrazyLife?ref=hl .

Yesterday I posted about our journey of how Emma’s diagnosis of autism came to be.  As incredible as it is, she is going to be 10 years old in a couple of months!!!  Crazy!  How can I have a 10 year old???  She was diagnosed at age 2, so her life today is very different than it was back then.  She has come so far in the past 7+ years since the diagnosis and her dad and I couldn’t be more proud of her!  Here is an example of a typical day in Emma’s life as a 9 year old girl with autism.
Emma’s day starts around 6:15 am, when I go in her room to wake her up.  She is picked up by the school van at 6:45 am, so she really doesn’t have a lot of time in the morning.  I have tried waking her up earlier, but it doesn’t work very well.  First thing she does is gets dressed in pajamas (she sleeps naked!).  Then, she goes out to the playroom and watches a Leapfrog video while eating dry Cheerios and graham crackers and drinking her milk with her first dose of Risperdal for the day.  Risperdal helps to decrease her self-injurious behaviors (hitting herself in the head, biting herself).   When the van gets here, Emma says, “Get dressed.  Get dressed.” (yes, every morning) and follows me into her bedroom to change into her school clothes.  These days, she only wears sweat pants, a long-sleeve shirt (she is refusing to wear a bra or even an undershirt, which is causing a big problem since she is starting to develop…SIGH), Converse shoes and NO SOCKS.  The “no socks” thing is relatively new.  She will not wear any type of jacket, either, which makes me feel horrible when I send my child out to the van in the dark, especially when it’s raining!  Fortunately, Emma attends a non-public school for students with autism (preschool thru age 22) called Land Park Academy, so the staff on the van totally “get it”.  She is always very happy to go to school (luckily).  She grabs her backpack, gives me and her sister a kiss, says goodbye and then my husband walks her out to the van to go to school.
Since the school is in Land Park and other students are picked up along the way, the van ride is pretty long (a little over an hour).  Fortunately, Emma does well riding in cars/vans and really doesn’t mind it.  School starts at 8 am and goes until 1:30 pm, when Emma then rides the van back home.  She gets home from school around 2 pm every day.  While at school, she is in a 3rd-5th grade class.  They don’t really do grade levels the same at this school as a typical school since all of the children have their own IEPs (Individual Education Plans) that they follow every day rather than them all working on the same things together.  They are grouped by age and do participate in some group activities throughout the school day like morning calendar, art projects, their morning laps/exercising and recess time.  A large part of the day is spent (at least in Emma’s class) with the students rotating through “stations” like academics, sensory, language, and daily living skills.  Each station has an instructional aide who works with the kids either 1-on-1 or in small groups on their specific goals.  Currently in the “academics” station, Emma is working on matching the color words to the actual color, matching uppercase and lowercase letters, identifying shapes by naming them, following positional instructions such as, “Put the block behind the book”, adding 2 numbers together up to a sum of 10 and matching coins and dollar bills to their identical match.  So, what I often tell people is, although she physically looks like a 9 year old girl, inside she is more like a 4 year old.
Also, during her school day, she works on daily living skills like brushing her teeth, toileting and opening and closing her lunch bag and contents inside her lunch bag independently.  She loves playing on the playground at recess and apparently, we were just told at her IEP, particularly enjoys playing with some of the boys!!  Oh No, I am sooo not ready for that!!!!  She also attends speech therapy and occupational therapy during her school week, on campus.  She has speech therapy 3 times a week and occupational therapy 2 times a week.  As I stated before, she is in school until 1:30 every day and returns home on the van at 2 pm.  After school she immediately comes inside, takes her shoes off and changes back into her pajama pants.  She then has a snack (usually goldfish crackers and graham crackers) and watches another video until her in-home therapy begins at 3:30.  She then has in-home ABA (Applied Behavioral Analysis) therapy from 3:30 until 6:30 pm, Monday through Friday.  Her in-home lessons consist of daily living skills like brushing her hair and teeth, toileting (she is still not fully independent), dressing herself, playing appropriately with toys and with her sister (turn taking) and communicating her wants and needs appropriately.   Also, during her lessons, she will take a bath every day.  I know, it sounds strange, but without getting too graphic, she needs to take a bath every afternoon to have a bowel movement.  Yes, this is the only way she will have one.  The in-home therapists are trained and actually do lessons with her while she is in the bathtub, giving her privacy to eliminate when she needs to, and are working with us on transitioning her to using the toilet to have her bowel movements.  We just recently had a “commode chair” purchased for us.  This is a toilet chair that sits in the bathtub, to help get her used to sitting on the toilet when eliminating.  Sorry, I know…TMI!!!  It is what it is, though.  We are just happy that she isn’t withholding anymore like she did a few years ago and had to be hospitalized to get cleaned out.  That is a whole other blog post on its own!!
One other thing we work on during her afternoon lessons is getting her out in the community.  Emma has a very difficult time going out to restaurants and stores because of her sensory sensitivities.  Some days we go to Target or a restaurant like Black Bear Diner, just to get her more comfortable with the experience and to give her the opportunity to work on self-regulation skills like listening to music on her iPod to help deal with the outside world.  Please see the attached video on a simulation of sensory overload while on a shopping trip to get a better understanding of what the experience is like for her.  It was shocking even for me to see, since I knew that she screamed  and got very upset, banging her head, etc. in the store but I didn’t really understand WHY until watching the video.  Very much an eye-opener for me!
After her lessons, she has dinner of either pancakes or scrambled eggs with pureed salsa and milk with her 2nd dose of Risperdal (often eating by herself, since she cannot tolerate sitting with the rest of the family eating different foods than her.  She will gag at the sight and smell of our food, so she chooses to eat alone).   I am a short-order cook, making 3 dinners every night – 1 for Emma, 1 for Ashlyn and 1 for me and my husband.  I know, crazy.  The remainder of the evening is spent watching videos, playing the wii (She loves Just Dance!) and spending the very little amount of down time that she has relaxing and playing with us.  She goes to bed (again naked) every night around 8 pm.  She has a very busy schedule and is often very tired and ready to go to bed by 8 pm!  That is pretty much a typical day for Emma, during the week.  It really does not vary much since she does so much better with routine and structure.  Thanks for reading!  Please return tomorrow for a blog post of Diana’s story of her journey getting Eli diagnosed.

Saturday, April 5, 2014

Blog # 4 – Jenifer’s Story: The Journey to Emma’s Diagnosis by Jenifer Pearsall

Jenifer Pearsall is a parent of a first grade student at Star Academy as well as a nine-year-old daughter with autism.  She has a Bachelor of Science degree in Speech Pathology and Audiology as well as a multiple-subject teaching credential.  She has taught elementary school as well as assisted in various preschool programs.  Currently, she is a stay-at-home mom who keeps busy with the house, kids, one dog, one cat and all of the chaos that it brings!  She is passionate about autism awareness and educating others about the disorder.  In her free time, Jenifer enjoys reading, baking, party planning and playing the Wii with her husband and girls.  Jenifer also blogs at https://www.facebook.com/MyAuSomelyCrazyLife?ref=hl .

In my previous life, before having children, I worked full-time as an elementary school teacher.  I taught first grade at Merryhill School and really enjoyed it, for the most part.  During my second year of teaching, in 2003, after over a year of trying to get pregnant and completing 2 rounds of fertility drugs, my husband Tim and I found out that I was pregnant!!  We were ecstatic!!  Before even finding out that I was pregnant, we decided on the name “Emma” if we had a girl (around 2001).  Much to our chagrin, Rachel Green on the television show Friends also had a baby and decided to name her “Emma” (May, 2002)!  Now everyone is going to think we picked the name because of Friends!!  NO!  We had it first!!  But anyways, I digress.  My pregnancy with Emma was pretty textbook.  I was sick (VERY sick) for the first trimester, felt great during the second and most of the third.  Towards the end of my pregnancy I developed high blood pressure and was taken off of work by my doctor in April of 2004.  My due date was July 4th.  I was induced and had Emma after about 12 hours of labor, on June 22, 2004.
Emma was a very “easy baby” as Tim and I used to say.  She met all of her developmental milestones right on time, cried very little, slept well and had a very mild temperament.  Being first time parents, Tim and I did everything “by the book”.  We kept track of how much she ate, how much she pooped, when she slept, sat up, began crawling, etc.  When Emma was around 8 months old, I was very excited because I thought, “I started talking around this time!  She should start talking soon!!”  I should also mention that I got my Bachelors of Science degree in Speech Pathology and Audiology, and had an extensive amount of education on speech and language development as well as experience with working with children who had language and speech delays.  Her first words were “dada” and “mama”, both at around a year.  I was a little concerned about the delay, but Tim was not and my pediatrician was not, either.  As I said, we did everything “by the book”.  This included the vaccinations.  We did not even hesitate when the doctor told us that she needed 5 shots in 1 visit!  Boy, our views on vaccinations sure are different now!  In a previous post, I talked about vaccinations and my view on them.  Back then, we didn’t know any better.  
At this time of Emma’s life (from about 3 months old until 2 years old) she was in daycare for most of the day while I taught school.  As I said before, she was an “easy baby”.  She did not cry when I left her at daycare (no, I’m the one who cried!!).  She was perfectly happy being in another room than us, by herself, even at a year old.  No separation anxiety.  At around 15 months, in September of 2005, we started to notice more things that just didn’t seem quite right.  Although she did have a few words, she was nowhere near where she should have been at 15 months.  When we called her name, even if she was standing just a few feet away with her back turned to us, she did not turn around or respond in any way.  It was at this time she also received her MMR shot.  As I said in a previous post, a couple of days later she ended up in the hospital.  Hmmm….Over the next few months, I started paying more and more attention to how she was acting.  When I would go pick her up from daycare, I would notice that the class had done an art project that day, but there was no sign of Emma’s.  When I asked about it, the teachers would tell me that she “didn’t want to do it” so they let her do something else instead.  They would also tell me that she would not sit and listen to stories or participate in any of the classroom activities except for music.  She has always LOVED music and to this day still does.  So again, I would ask them what they do when she doesn’t want to participate.  They told me that they would let her do whatever she wanted because they didn’t want to upset her.  REALLY??  Needless to say, Tim and I were NOT happy to hear this, but since I was an employee and was receiving discounted childcare at Merryhill, we didn’t really have a choice but to keep her there.  However, Tim and I made a decision that I would finish out the school year, but in June I would quit my job to stay home with Emma full-time.
The next 6 months, from January until June of 2006, were difficult.  I was not happy with my teaching job (teaching 3rd grade) and we were worried about what was going on with Emma at daycare and her lack of wanting to participate.  One day when I came to pick Emma up from daycare, the Director asked me if we were concerned at all about her hearing.  I mentioned to her that we had noticed she didn’t respond when we called her name, but she would come running out of her room if the “Dora the Explorer” theme song came on the television.   Hmm… So, very little language, not sure how well she is hearing, no interest in daycare activities or other children.  I made a call to the Regional Center to start the ball rolling getting her evaluated for speech, hearing and child development therapy.  By the time June of 2006 came, I already knew in my heart that she had autism.  Tim, on the other hand, was in complete denial.  June of 2006 was a very emotional month for me.  I was excited to be quitting my job and being able to be home with my girl, but I was also very sad and worried about what would happen next.  My previous dreams of being a stay-at-home mom and taking Emma to the library for preschool story time and play dates with friends were disappearing in front of my eyes.
Emma turned 2 on June 22, 2006.  Over the next month, I found out that I was pregnant with Ashlyn.  On July 24, 2006, we got the official diagnosis of “mild to moderate autism”.  I was not surprised; in fact, I was kind of relieved in a way.  I know that sounds weird, but like I said, I already knew in my heart that’s what it was (I had been doing A LOT of research on my own by that point) and now that we had the diagnosis, we were able to get more services for her and start the mourning process, not for her death but for the death of the child we would probably never have.  Would she ever go to school?  Would she ever have friends?  Drive a car?  Get married?  Although today we do know the answers to some, the rest (and the best, I believe) is still to come.
So, to recap:  within a month I quit my job, started getting Emma evaluated for speech and hearing (which turned out fine, by the way), found out I was pregnant and got the bomb dropped on us that yes, she is indeed on the autism spectrum.   Boy, let me tell you, there was a LOT of crying by me over that summer!!  Mine and Emma’s daily lives turned into a series of therapies, both out of the house and in the house, doctor’s appointments for me (pregnant and very sick, again) and further evaluations for her.   Wow.  That was tough reliving the whole thing!  This is just the short version.  I am trying to keep this as short as I can.  Many of my friends have told me that I need to write a book.  I think I am on my way to doing just that.  
That is our story of how Emma came to be diagnosed.  Today she is a very happy, beautiful, smart and playful 9 year old girl who loves music, dancing, playing “Hide and Go Seek” with her sister and all things Winnie the Pooh or The Wiggles!  She is talking more and more and continues to improve every single day.  Thank you for reading.  Please come back tomorrow for a post on “A Day in The Life of Emma Today”.

Friday, April 4, 2014

What are the early signs of Autism? By guest blogger Diana Patterson

Diana Patterson is a stay at home mom of a 12 year old step daughter, seven year old little girl and two year old son. Diana and her family have been a part of the NCS community since 2011.  Prior to staying at home Diana worked in the accounting industry.

My son Eli is turning three in May. He has big fluffy curls and big brown round eyes. His smile makes anyone melt like butter. He loves to laugh and play. You wouldn't know he has autism right off the bat. After I disclose about my son’s autism diagnosis the second question often is “How did you know?” This answer varies from case to case because no two autistic individuals are the same.  As a result, parents rarely know instinctively. Usually there are a series of events and missed milestones which then prompt parents to see a doctor.
I never really felt like there was something "wrong" I thought that his lack of sleep, need to climb, and almost non-existent communication was normal for boys his age. I always wondered why he wasn't talking and when I asked my doctor he even said to me "He lives with two older sisters. He probably doesn't feel the need to talk.”  My two older girls are definitely chatterboxes. Plus, the oldest loooved to spoil her baby brother so I figured he was right and decided to wait until his 2nd birthday to bring it up again. A few days before his two year check up my mother in law said to me “Please see if he’ll check his hearing. I’m concerned because I’ve never seen him get startled.” so I did.   Something about “Grandma is concerned because…” sparked something in my pediatrician to refer Eli to a otologist (hearing doctor) and the local regional center who deals with early intervention and speech services.  The rest is history so please stay tuned to our autism series.  Tomorrow, Jenifer will tell us the story about Emma’s autism diagnosis.

With that said, it is important to know what the red flags are because early intervention is crucial.  Smiling and looking happy or joyful should be met as early as six months.  Communicating non-verbally by sharing sounds, smiles, other facial expressions should be present by nine months.  Babbling or baby talking by 12 months.  My son Eli always babbled but did not say any actual words until about 2 1/2. Communicating non-verbally using pointer, showing, reaching, or waving by 12 months.   

How is Autism Treated?

Individuals on the Autism spectrum are all different and have different needs.  Each person must have their own treatment plan tailored to their skills at that time.  Here is the list of some services and short descriptions on their functions.

Behavior and Communication:
1. Applied Behaviour Analasys also known as ABA helps improve a variety of skills by discouraging negative behaviors and encouraging positive behaviours.  Under the umbrella of ABA is the different teaching programs. Here are some:
a. Early Intensive Behavioral Interventions- This is ABA for kids 3 and younger.

b. Discrete Trial Training - Each skill is broken down to it’s simplest form; progressively making it more difficult as a child completes the different steps until a child can perform the action/skill anywhere and with anyone.  For example, waving hello or making eye contact.

2. Occupational Therapy (OT)- teaches skills that help the person live as independently as possible. Skills might include dressing, eating, bathing, and relating to people.  
3. Sensory integration therapy helps the person deal with sensory information, like sights, sounds, and smells. Sensory integration therapy could help a child who is bothered by certain sounds or does not like to be touched.
4. Speech therapy helps to improve the person’s communication skills. Some people are able to learn verbal communication skills. For others, using gestures or picture boards is more realistic.
5. The Picture Exchange Communication System (PECS)  uses picture symbols to teach communication skills. The person is taught to use picture symbols to ask and answer questions and have a conversation.
There is not much scientific support to cause widespread recommendation of any specific diet.    There are many parent forums in which parents share notes on the special diets and other natural supplements that have helped.  Reliable and well known therapists have also shared special diets but they have yet to be approved.  Currently the best way to deal with diets is by speaking to your pediatrician.  My son Eli had digestive issues; as a result, his body was not absorbing all the nutrients. After recording what he ate and drank for two weeks we found that Eli has a sensitivity to high fructose corn syrup. Nowadays we limit his juice intake and read labels because corn syrup is hidden in a lot of foods.  He also takes a multivitamin daily to ensure he’s getting all of the vitamins and minerals needed.  

There is no medication to help cure or treat the main symptoms of Autism. However, in 2006 the  FDA approved Risperdal to help with irritability, aggression, and temper tantrums.  There are also other medicines that have been developed to address similar symptoms in other disorders.  

Please see http://www.cdc.gov/ncbddd/actearly/  for more information on milestones and how to track them.  Thank you for taking the time to learn a little more about Autism.  Tomorrow, Jenifer will tell us the story about Emma’s autism diagnosis.

Thursday, April 3, 2014

Is there an autism epidemic? By guest blogger Jenifer Pearsall

Jenifer Pearsall is a parent of a first grade student at Star Academy as well as a nine-year-old daughter with autism.  She has a Bachelor of Science degree in Speech Pathology and Audiology as well as a multiple-subject teaching credential.  She has taught elementary school as well as assisted in various preschool programs.  Currently, she is a stay-at-home mom who keeps busy with the house, kids, 1 dog, 1 cat and all of the chaos that it brings!  She is passionate about autism awareness and educating others about the disorder.  In her free time, Jenifer enjoys reading, baking, party planning and playing the Wii with her husband and girls.  Jenifer also blogs at https://www.facebook.com/MyAuSomelyCrazyLife?ref=hl.

Flickr image credit
This is the second post in a series to raise autism awareness in our school and around the world.
One of the biggest topics discussed and debated on regarding autism is whether there really is an “autism epidemic” or if we are simply noticing the signs and getting individuals diagnosed more today than before.  There are some very important facts that do point to an “epidemic”.  For instance, autism today is the fasted growing developmental disability in the United States.  The latest numbers released by the CDC (Center for Disease Control and Prevention) just last week, is mind-blowing, although unfortunately to those of us in the autism community, not surprising.  Today, 1 in 68 children falls somewhere on the autism spectrum.  This is a 30% increase from the 1 in 88 children just 2 years ago.  The numbers are even greater in boys, with 1 in 45 boys being somewhere on the spectrum.  Why is this happening???  The scariest and most infuriating thing about this is that even with these alarming numbers, WE STILL DO NOT KNOW THE CAUSE.
There are people who will tell you they know what causes it.  There are also people out there who still say, believe it or not, it does not exist!   Although there has been a great amount of research done in an attempt to find the cause (much of which has taken place right in our own backyard, at the Mind Institute at UC Davis) there is still no definitive answer.  Some of the POSSIBLE causes include:  the environment (pesticides in our food, chemicals in our water supply, air pollution), genetics, the age of the parents, vaccinations, riding on rollercoasters while pregnant (No, not really!  Just making sure you’re paying attention!  Although, I did think, “Oh my goodness!  I went on the rides at Disneyland before I knew I was pregnant with Emma!  Maybe…”)
One of the most common questions I hear from people once they know I am an autism parent is what do I think causes it?  My answer, and I am just an autism parent NOT a doctor, is that it is a combination of factors.  I do believe there is a genetic component, as we do have a few people in our family who also fall somewhere on the autism spectrum.  I also believe the environment and vaccinations play a role (yes, I said “play a role”.  Please see my next paragraph!)  Think about it.  We never heard about autism 20+ years ago.  We also did not have so many GMO’s (Genetically Modified Organisms) in our food, chemicals in our food and water or environmental pollutants in our air as we do today.  Things that make you go, “Hmmmm…”  
Now I did not want to talk much about the “V” word, but I cannot fully write a blog on the POSSIBLE causes of autism without at least mentioning it.  My personal opinion on the topic?  Remember, I am not a doctor!  Vaccinations themselves DO NOT “cause” autism.  There, I said it.  HOWEVER, having said that, I do not believe the vaccination schedule “recommended” by the CDC should be followed exactly as they say. Today, the CDC recommends 49 doses of 14 vaccinations by the age of 6!  Shocking, given that just 40 years ago, when I was born, there were only 7 shots given by the age of 2!!  As I stated before, I believe it’s a combination of factors.  If there is a genetic component already in the child’s body, I think the massive intake of vaccinations at such a rigorous schedule may “trigger” the disorder.  Emma was our first child and we followed the recommended schedule, as with everything else we were told, to a “T”.  Just 2 days after she received the MMR vaccine, at 15 months, she was admitted to the hospital with breathing trouble, severe lethargy, low-grade fever and was completely inconsolable.  She was in the hospital overnight, given breathing treatments and medicine for the fever.  Also, soon after the MMR, she stopped talking (although she was already language delayed before the shot) and eating “messy” foods like pasta with sauce because she didn’t want to touch it.  To this day, she will not touch “wet, messy” textures like paints, foods or wet sand.  Again, “Hmmmm”.  
So, when Ashlyn came along, we DID vaccinate her, but much MUCH slower than was recommended.  She did not get her MMR shot until she was almost 3 years old.  Our pediatrician did not like it, but OH WELL!!  SO, bottom line:  Vaccinate your children because you do not want them to get life-threatening diseases, but do it SLOWLY.  I would not give them more than 2 shots in a given day and I would not allow the doctors to bully you into doing them faster than you want to.  It’s your child and you are the final decision maker.  OK, enough about that!

So, is there an autism epidemic?  I don’t know.  Is it just being more easily diagnosed than before?  Maybe.  Regardless of why the number is so high, the fact is that autism is real, is life-long and needs to be addressed by the medical community as well as the education system.  Early diagnosis is key for receiving the crucial early intervention services but what is also needed is help for the thousands of people who are now becoming adults and are “aging out” of the system at age 22.  Many of these young adults are not able to live on their own because of financial reasons (unable to hold a job) or lack of independent living skills (dressing themselves, preparing food for themselves, etc) or both.  Action needs to be taken to address the needs of the individuals and their families, some of whom like ours, may be caring for our daughter, under our roof, for her whole life.  Thank you again for taking the time to read this.  Please come back tomorrow for another blog, written by another autism parent, on the topic of “Signs to Watch For and Therapy Solutions”.  

Wednesday, April 2, 2014

What is Autism Anyway? By guest blogger Jenifer Pearsall

Jenifer Pearsall is a parent of a first grade student at Star Academy as well as a nine-year-old daughter with autism.  She has a Bachelor of Science degree in Speech Pathology and Audiology as well as a multiple-subject teaching credential.  She has taught elementary school as well as assisted in various preschool programs.  Currently, she is a stay-at-home mom who keeps busy with the house, kids, 1 dog, 1 cat and all of the chaos that it brings!  She is passionate about autism awareness and educating others about the disorder.  In her free time, Jenifer enjoys reading, baking, party planning and playing the Wii with her husband and girls.  Jenifer also blogs at https://www.facebook.com/MyAuSomelyCrazyLife?ref=hl.
Flickr image credit
This blog post is the first of eight in a series this week featuring two of our parent guest bloggers. 

Today is World Autism Awareness Day. If you turn on the news or read the newspaper today or any other day this month, you will hear a lot about autism and the most recent findings. So, I thought it would be a good idea to start this week of blogging about autism with explaining what autism is and what it is not.

So, what is it? Well, the official definition is “a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts”. Huh? To put it very simply, autism is a disorder of the brain that affects how the person communicates, makes friends (or not), interacts with their environment and, despite what Jenny McCarthy says, is a life-long condition. One thing that autism is NOT is a “one size fits all” disorder. If you meet one person with autism, you have met ONE PERSON with autism.

Autism, or more specifically Autism Spectrum Disorder (ASD) is just that - a spectrum disorder. This means there are varying degrees of it along a spectrum, from “high functioning” or mild autism to “low functioning” or severe autism. There are other names for severity of autism as well, such as “Asperger’s Syndrome” for high-functioning, which is a person who is able to communicate and function, for the most part, independently and may just have difficulty with social situations because of an inability to understand humor or sarcasm. There are also varying levels of IQ of people on the spectrum, with some people being “savants” or people with brilliance in a certain area such as art, music or math. Other common characteristics of people on the autism spectrum include: repetitive movements such as hand flapping or rocking back and forth, preoccupation with certain parts of a toy (like the wheels of a toy car) rather than playing with the toy appropriately, lining up objects, an unusual fascination or obsession with things such as bottle caps or in my daughter’s case, cotton stuffing from pillows/stuffed animals (yes, she pulled it all out and our house looked like a Winter Wonderland!), a lack of eye contact, not responding to his or her name, difficulty with social situations, sensitivity to noise or textures of clothing and foods, and echolalia (repeating what they hear you say or sometimes whole lines from television shows). These are just a few of the signs. 

Here is a video simulation of sensory overload:

Another topic you may see this month on the news or in your Yahoo or Google “top searches” is about famous people who MAY have/had some form of ASD. Now, granted, some of these may have an actual diagnosis but many others never had a diagnosis because there was no diagnosis back when they were alive! You will see things like, “Albert Einstein was autistic!” and “Abraham Lincoln may have been autistic because he had signs of depression and anxiety”. PLEASE. Who doesn’t have signs of depression and anxiety???? So, all I’m saying is, don’t believe everything you read! Albert Einstein, Vincent Van Gogh, Mozart … maybe they displayed “signs or symptoms of autism” and maybe they would have been diagnosed had there been a diagnosis. Autism as a disorder did not clinically exist until 1944, so… There are some famous people who do truly have some form of autism such as Dr. of Animal Sciences/author/autism activist Temple Grandin, actress Darryl Hannah and singer Susan Boyle. 

To sum it all up, autism is a very complicated, amazing and devastating disorder that is becoming more and more prevalent (see my next blog tomorrow on the statistics and possible causes). I could go on and on, but I will close with this. Autism has been a part of my life for 7 years now. It has made me a better person, a more patient parent, more empathetic, stronger than I ever thought I could be and someone that never takes anything for granted. Every little step in progress, well, there is no “little step”. Each step is huge and so rewarding! Thank you for taking the time to read this. I hope you will return for tomorrow’s blog as well as the rest of the blogs this week!