Tuesday, April 29, 2014

All About ADHD

Image Credit: Mind Med 

ADHD, or Attention Deficit Hyperactivity Disorder, is a biological disorder that is one of the most researched topics in child and adolescent mental health. Although the definition of ADHD has changed many times in the last decade (reflecting changes in conceptualization of the disorder and the newest research) the needs of the individuals and families living with ADHD have not. 

ADHD is not a mythical disorder. ADHD is a neurobiological disorder recognized by the American Medical Association, American Psychiatric Association, and American Pediatric Association (among many others). ADHD is more than a disorder of attention, hyperactivity, or poor impulse control, although these characteristics are generally the most observed.

"ADHD is not just a temporary state that a child will outgrow, or a normal phase of childhood that will pass in time. It is not behaviors caused by parental failure to discipline the child, or willfulness caused by bad temperament  but a real disorder that can be confusing, heartbreaking and nerve-wracking to the child and family that surrounds them. Even though there are no outward signs that a handicap is present, ADHD, like other disabilities, can bring significant challenges to the child and their family." (Lougy, DeRuvo, & Rosenthal, 2009). 

 Image Credit: Not Just a Bean Bag

ADHD is currently understood as a developmental impairment of the brain's self-management system (executive functioning). There is no relationship between intelligence and ADHD. Rather, there seems to be an important relationship ADHD and the ability to regulate emotions, as well as motivation. 

"Impairments of ADHD are not due to a global excess or lack of a specific chemical within or around the brain. The primary problem is related to chemicals manufactured, released, and reloaded...Persons with ADHD tend not to release enough of these essential chemicals, or to release and reload them too quickly. ADHD medication helps to improve this process."
(Thomas Brown, Ph.D. - ADDitudemag)

ADHD disrupts a person's ability to manage his/her behavior or to act with certain consequences in mind - which explains why individuals with ADHD struggle most when they must complete tasks with no "immediate payoff" - for school-age children and adolescents, this can mean homework, reading, writing, or household responsibilities. If the task at hand does not offer immediate reinforcement or reward, chances are the individual with ADHD will struggle to complete the given task.

"Goal-directed, future-oriented behavior demands that a person be able to motivate himself/herself internally. This ability is described as willpower, self-discipline, ambition, persistence, determination, or drive. ADHD disrupts this mechanism, leaving those with the disorder 'low on fuel' in motivating behavior toward future rewards.

If a task provides motivation and offers immediate gratification - such as playing a video game - a person with ADHD will have no problem sticking with it. Give these kids a task for which there is no external reinforcement or payoff, however, and their persistence falls apart. They jump from one uncompleted activity to another and become bored and disengaged."
(Carol Brady, Ph.D., Robert M.A. Hirschfeld, M.D., Russell Barkley, Ph.D. - ADDitudemag)

"Clinical data indicate that executive function impairments are situationally-variable; each person with ADHD tends to have some specific activities or situations in which he/she has no difficulty in using executive functions that are significant impaired for him/her in most situations. Typically, these are activities in which the ADDer has a strong personal interest or about which he/she believes something unpleasant will follow quickly if he does not do the task right now."
(Thomas Brown, Ph. D. - ADDitudemag)

    Image Credit: The Crimson White

The American Psychiatric Association (APA) Diagnostic and Statistical Manual of Mental Disorders (DSM-V) separates ADHD by the categories of Inattention, Hyperactivity, Impulsivity.

Click HERE for ADDitudemag.com's Checklist of 18 ADHD Symptoms.

In general, symptoms of ADHD manifest differently for every individual. How these symptoms present themselves as well as when they become a significant impairment (childhood vs. adolescence vs. adulthood) can vary greatly from person to person.

"Recent research has shown that many with ADHD function well during childhood and do not manifest any significant symptoms until adolescence or later, when greater challenges to executive function are encountered. Over the past decade research has shown that impairing symptoms of ADHD often persist well into adulthood. However, studies have also shown that some individuals with ADHD during childhood experience significant reductions in their impairments as they grow older."
(Thomas Brown, Ph. D. - ADDitudemag)

Research suggests that there are significant gender-related differences in the manifestation of ADHD. Girls are generally less impulsive and are more likely to exhibit the inattentive type of ADHD. Research also indicates that children diagnosed with Autism Spectrum Disorder or Oppositional Defiant Disorder (ODD) are often likely to have a co-occurring diagnosis of ADHD.

    Image Credit: Silicon Valley Brain Spect Imaging, Inc. 

Unfortunately, there are still many misconceptions and myths about individuals with ADHD. It can be difficult to understand ADHD, as symptoms can vary greatly between individuals and change situationally. Many struggle to understand why someone with ADHD can maintain focus or "hyperfocus" on things that interest them, like video games, but have a hard time sticking with other things, like school work. This can lead to assumptions that the child is being "willfully disobedient" or lacking discipline. Dr. Robert Hirschfeld, M.D., describes his son's experience with ADHD and the common misconceptions that accompany ADHD:

"Unfortunately, when it comes to brain disorders, such as ADHD, depression, or other neurobiological conditions, a harmful attitude creeps in : the belief that attention deficit disorder, and other disorders originating in the mind, reflect 'bad character' and that all it takes is more willpower to overcome them.

As a psychiatrist, and also as the father of an ADHD child, I know how destructive this view is. Many people with depression suffer for years because they've tried to makes themselves feel better, and they still can't function. Coworkers and spouses become frustrated and blame the sufferer when attempts to 'jolly' a person out of a depression don't work. Their lack of understanding adds guilt and shame to the long list of problems that depressed people cope with.

My son could not will himself to not have ADHD. Trying to get him to change his ADHD behavior didn't work. And had we stopped at that, his life would have been marked by frustration and failure. Without proper medical, psychological, and educational interventions, no amount of willpower could have helped. Fortunately, our continued interventions enabled our son to share his own destiny and experience many successes."

    Image Credit: nwfdailynews

The primary treatment for ADHD is a combination of medication and therapy. Experts in the field agree that medication should be considered for children with ADHD, whose symptoms are interfering with social, emotional, or academic functioning. Types of behavior therapy and alternative treatments can be helpful in managing ADHD symptoms, however, they do not take the place of medication. Experts also agree that children should be told about their diagnosis. Often, many parents will ask the doctor to tell the child about ADHD and to answer any questions he/she might have. Keeping the diagnosis a secret does a disservice to the child, and ultimately communicates that there is something wrong with having ADHD. There are now a variety of books and resources (see the Resources section later on) for children newly diagnosed with ADHD. These materials can help further explain ADHD, answer questions, and normalize any feelings or worries they might have.

"'If your child has been diagnosed with ADHD and is struggling, he probably needs medication, '" says Stephen Copps, M.D., an ADHD specialist in Macon, Georgia. 'Medication is the cornerstone of therapy. It's appropriate for most children with diagnosable ADHD. It is not a last resort.'

Of course, it's essential that your child's diagnosis of ADHD is a reliable one. ADHD-like symptoms can be caused by a range of disorders, including anxiety, depression, and obsessive-compulsive disorder. In some cases, a child's symptoms arise from the frustration associated with having to struggle with a learning disorder. 

Make sure the doctor uses the diagnostic criteria spelled out in the...Diagnostic and Statistical Manual of Mental Disorders, commonly referred to as the DSM-IV [note: the newest edition is the DSM-V]. The doctor should get input from your child's teacher as well as from you, his/her parents."

"Studies and Clinical trials have shown that ADHD medications give the following benefits to some children and adults: 
  • improve the working memory, classroom behaviors, the motivation to execute tasks, and to persist in solving problems
  • minimize boredom, distractibility when doing tasks, and emotional outbursts
  • increase test performance, rates of graduation, and other achievements that can have lasting effects
  • normalize structural abnormalities in specific brain regions"
(Thomas Brown, Ph. D. - ADDitudemag)

    Image Credit: ADDitudemag.com

What Can I do?
As a parent or teacher of a student with ADHD, it can be difficult to know how to best support the student and provide them with the tools they need to be successful. Certain behaviors associated with ADHD can be frustrating for parents and teachers trying to help, as well as the student, who may often face disappointment, shame, or negative self-esteem as a result of behaviors they cannot control.

Expert Advice:
"To help a child with ADHD complete work when there is little immediate reward or interest in the task, adults can establish artificial rewards to sustain motivation. Earning tokens, chips, or other external rewards will help them persist. Without such rewards, they cannot themselves must the intrinsic willpower to stick with a task. So, if your child with attention deficit disorder needs to read an entire chapter of a textbook, offer a reward for each segment of the work. Eventually, he will be able to sustain attention for longer periods, as tenacity becomes a habitual response to work."
(Russell Barkley, Ph.D. - ADDitudemag)

"Providing ADHD kids with structure--and supporting a habit of following that structure--helps them develop self-management skills that offset the impulse to veer off track. People with ADHD who never learn these skills are in for a bumpy ride. Dismissing typical ADHD behaviors as 'boys being boys' denies kids the help they need to become independent, responsible teens and adults."
(Carol Brady, Ph.D. - ADDitudemag)

ADDitudemag.com is a comprehensive resource for any parent, teacher, or professional working with a child that has ADHD. ADDitude Magazine has clear, user-friendly information and advice from experts in the field of ADHD and mental health practitioners. Parents can find parenting strategies, education and learning resources, first-person stories from individuals dealing with ADHD, online communities for parents to share tips and resources, and much more. Their free webinars offered are very informative and provide the newest information about treating ADHD from experts around the country: http://www.additudemag.com/webinars/

My Favorite ADDitude Articles for Parents and Teachers:

Classroom and School Accomodations for Children with ADHD

ADHD at School: Giving Instructions and Helping Children Follow Directions

ADHD Parenting Tips from an ADHD Coach

12 Parenting Strategies that Work for ADHD Kids

ADHD Secrets My Teacher (And Parent) Should Know

Image Credit: FTSI Connecting

Additional Resources

ADHD Webpage
Richard Lougy, MFT
Free resources and professional services, for parents, teachers, and other caretakers of children with ADHD.

Books for Parents 

A New Understanding of ADHD in Children and Adults: Executive Function Impairments
Thomas E. Brown

The Gift of ADHD
Lara Honos-Webb

1-2-3 Magic
Thomas W. Phelan

Smart but Stuck: Emotions in Teens and Adults with ADHD
Thomas E. Brown, Ph.D.

Books for Children

The Survival Guide for Kids with ADD or ADHD
John F. Taylor

It's Hard To Be A Verb
Julia Cook 

Super Emotions! A Book for Children with ADD/ADHD
Lionel Lowry

Learning to Slow Down and Pay Attention: A Book for Kids about ADHD
Kathleen G. Nadeau

Friday, April 11, 2014

Wrapping Up Autism Awareness! 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.

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

A Day in the Life of Eli: 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.

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, rainboots 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

Diana's Story: Learning About Eli's Diagnosis

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 livingroom 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 frustruated 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 behaviour. 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 psycologist.  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

A Day in the Life of Emma Today: 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.