October 31, 2014

Our Autism Journey to a Big Boy Bed

Brandon is three.  He has been in a crib up until about a month after his third brithday.  This is fairly old to still be in a crib.  He's had the ability to climb out of his crib for more than two years before we made the switch.  He loved his crib, and bedtime was easy peasy for me, so we went with it!  He climbed out a couple times, but that was a very rare occurance.  As active, strong, and athletic as he is, he stayed in the crib.  Up until about a month ago...

Brandon takes a long time to fall asleep at night.  He always has.  He just can’t seem to shut his little racing brain off.  When he was in the crib it wasn’t that big of a deal because even though he could climb out, he never did.  All he had to entertain himself was his self and his blanket.  Sometimes I would hear him belly laughing…just cracking up hysterically and I would have no idea why.  It was a little creepy actually!  I knew that transitioning to the big boy bed was going to be a task.  I started week one on my Fall Break at work so that I would have the flexibility for several late nights in a row.  The most important things I (try to) do are…

1.  I do not give up.  No pleading, talking, scolding, reading to him, etc.  He has to lay there until he falls asleep, and that is that.  I just keep laying him back in bed.  No muss no fuss.  No reaction to his antics.

2.  I am consistent.  I don't let him sleep with me one night, or have a toy one hard night, or allow him to put a foot on the floor one night, and then not let him the next night.

I downloaded an audiobook (free from the library) to help me pass the time; especially in that first couple weeks when I spent most of the time in his room.

4.  Nanny cam! Staying in there was boring, frustrating, draining, hard on my body, and not how I wanted to spend my evening after I long day at work.

I installed a light switch guard so that Brandon can’t turn on his bedroom light.  This cuts down his desire to get out of bed tremendously.

I put a doorknob safety cover on the door.  He knows he can’t get out of the room, but more importantly, this is a safety issue.  This prevents him from trying to walk downstairs in the middle of the night, climbing the catwalk rails, or getting into some other sort of trouble!

Week one of the transition I was off work.  I needed to be able to stay up super late to make sure Brandon did not get out of his bed.

Big Boy Bed Journal Entries  
This is how it happened for us...
Night 1:
Brandon did not nap at school today.  So, my first thought is, “Yes!  He is going to pass out at 8 a.m. and sleep in his big boy bed all night long without a fight.  We’re sitting at the table eating dinner, and I am pleased.  He is happily eating his mac ‘n cheese while I am eating a sandwich.  I turn and look at him and he is zonked.  He is passed out…in his high chair, MID-BITE, at 6:30 p.m.!  So I think, “Okay, this is still not so bad…he will be up at the crack of dawn, but at least I don’t have to fight him to stay in his bed the first night.”  He’ll wake up and realize, “Hey!  I sleep in a regular bed now...cool!”  I lay him in bed, still asleep, turn out the light and creep away.  At 8:30 p.m. I hear the pitter patter of his little feet running around his bedroom.  He took a two-hour nap, waking pretty much up right at bedtime.  SIGH….he did not go to sleep until 2 a.m. on night one.  I lay on the floor next to his bed dozing in and out of sleep, waking up every 15 minutes or so to lay him back in his bed.  Night one was a just a bust.

Night 2:
Brandon has realized that he thinks it’s funny not to get out of bed…but to almost get out of bed.  He’s still in bed, but he has one foot on the floor.  Or he’s still in bed, but he’s laying the wrong way.  He’s still in bed, but his legs are hanging over the rail.  Whatever.  If I move him every time he’s not laying down appropriately, I’m just giving in to this “game.”  In fact, I would be losing the game.  Once he realizes he’s getting zero attention from me (positive or negative) his shenanigans are fewer and further between each other.  He got out of bed only twice.  I heard the snoring begin at 11 p.m...music to my ears.  Can I really be this lucky getting him into a big boy bed?

Night 3:
I put him to bed at 9:30 (about 30 minutes later than normal) to make sure he is tired.  I start off sitting next to his bed, facing the door.  He gets out of bed, and without looking at him or talking to him I put him back in bed.  This happens repeatedly.  One time he almost made it to the light switch.  He’s sure messing with me tonight.  He thinks all of this is hilarious.  On roughly the eighth time, I can tell I’m close to losing my cool.  I put him back in bed, and walk out of the room.  I take a deep breath...several deep breaths actually, and count to 10.  I walk back in and of course he’s out of bed, so I put him back in, still not saying a word.  I fade myself out by inching my way to the door every few minutes.  Eventually, I stand just outside the door with it cracked so he knows I’m still there.  He doesn’t get out of bed for 15 minutes, so I shut the door.  I stand outside the door for 30 minutes and he doesn’t move, although I can hear that he is still awake.  I went down to bed and he didn’t get up the rest of the night.  I don’t know what time he actually fell asleep but he did stay in bed.  I am so glad I didn’t give up.

Night 4:
It’s 9 p.m. and he’s asleep in the car on the way home from Nanna and Poppy’s house.  Yes!  That was how night one was supposed to go, but hey…if there’s one thing Brandon has taught me, it’s that life doesn’t work out just how you plan.

Nights 5 through 14 are all about the same.  He lays in bed, and I lay next to the bed.  He makes noise and wiggles around, but for the most part he stays in bed.  It is time to start fading out so that I don’t have to lay on the floor for two hours every night waiting for him to fall asleep.  I start fading out by slowly inching my way to the door, eventually just standing outside the room out of his view.  If he gets up, all I have to do is walk in the room and he’s already darting back to his bed before I can even get to him.

Night 15 and beyond...
Why didn’t I think of this before…nanny cam!  Now I lay Brandon in bed and watch TV in the bonus room with my phone in my lap streaming video of Brandon in his room.  I can be up and laying him back in bed before he even makes it to the light switch.  I couldn’t have used the nanny cam any sooner than this though, because I had to set the foundation for him knowing he has to stay in bed.  

Update, Dec. 19:  I am over the mon about Brandon’s progress in his big boy bed.  It took a lot of time, patience, and late nights, but now I am at the point where I lay Brandon in his bed and he does not get out.  I don’t have to go in his room at all to lay him back down.  It’s been this way for at least a month now.  It is so freeing.  All kids are unique in their progress, but these things worked for us.  I am so proud of my little man!

October 21, 2014

Autism Glossary


If a parent with a typically developing child hears me blabber on about autism related stuff (which happens a lot), they constantly have to stop me to ask me what something means.  There are so many terms and acronyms to know that special needs talk often sounds like another language.  We special moms tend to forget that most people don’t know what these things are!  It reminds me of going to an office party for a company you don’t work for.  Everyone talks about their work, and you don’t understand what or who they are talking about.

Other autism glossaries online are jam-packed with terms.  Talk about overhemling!  I’ve pulled the ones I use most often to make it easier.  The more meaty terms/definitions are cited with a link to that website for additional information.  I have included some of my own tidbits, which are indicated in italics.

Applied Behavioral Analysis (ABA) – ABA is widely recognized as a safe and effective treatment for autism. It has been endorsed by a number of state and federal agencies, including the U.S. Surgeon General and the New York State Department of Health. Over the last decade, the nation has seen a particularly dramatic increase in the use of ABA to help persons with autism live happy and productive lives. In particular, ABA principles and techniques can foster basic skills such as looking, listening and imitating, as well as complex skills such as reading, conversing and understanding another person’s perspective. (Autism Speaks)

Autism Umbrella – In May 2013 all autism disorders were merged into one umbrella diagnosis of autism spectrum disorder (ASD). Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. (Autism Speaks)
So, if your child was evaluated after May 2013, he/she wouldn’t have gotten a diagnosis such as Aspergers.  It’s all autism spectrum disorder now.

Autism Spectrum Disorder – Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less. (CDC) We have to keep in mind that autism is a spectrum disorder. So, all people with autism have different symptoms, and to varying degrees. The Autism Tennessee website is helpful in giving a more detailed explanation of the diagnosis, signs and symptoms, causes, treatment, and demographics. http://autismtn.org/about-autism/

Comprehensive Development Classroom (CDC) – A CDC classroom is a special education classroom.  Placement in a CDC classroom is decided by the IEP team.

Echolalia – Parroting or repeating what another person says.
This includes, but is certainly not limited to, repeating a script from a T.V. show or movie.

Expressive Language – A broad term that describes how a person communicates wants and needs. It encompasses verbal and nonverbal communication skills and how an individual uses language. Expressive language skills include: facial expressions, gestures, intentionality, vocabulary, semantics (word/sentence meaning), morphology, and syntax (grammar rules). (Pediatric Therapy Network)

FAPE (Free and Appropriate Public Education) - The Section 504 regulation requires a school district to provide a “free appropriate public education” (FAPE) to each qualified person with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the person’s disability. (Department of Education)

General Education Classroom – Typical classroom in which education is received based off of state standards.  

Individual with Disabilities Education Act (IDEA) - The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.  Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B. (idea.ed.gov)

Individualized Education Plan (IEP) – A written statement for each child with a disability that is developed, reviewed, and revised in a meeting in accordance with IDEA.  For more information about what is encompassed in the IEP click here.
The IEP is a legal document.

The IEP team consists of:
- Special education teacher
- Regular education teacher
- Parent(s)
- Local education agent (LEA) such as the principal or assistant principal
- Interpreter of evaluation results such as a speech therapist or psychologist
- At the discretion of parents or agency, other individuals with knowledge/special expertise regarding the child

Least Restrictive Environment (LRE) – According to IDEA, to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and that special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.
Children with disabilities, to the maximum extent appropriate, have the right to be educated alongside their non-disabled peers. It is up to the IEP team (which includes the parents) to decide the best course of action for the education of your child.  The general education classroom might be the most appropriate place, or might not be.

Occupational Therapy (OT) - Occupational therapy teaches skills that help the person live as independently as possible. Skills might include dressing, eating, bathing, and relating to people. (CDC)

Parallel Play - Children sit side by side but play on their own.

Picture Exchange Communication System (PECS) - augmentative/alternative [picture] communication intervention package for individuals with autism spectrum disorder and related developmental disabilities. (PECSUSA).
I initially started with pictures I took of things in his life that he actually used.  For example, a picture of his actual high chair for when it was time to eat, or a picture of my actual car for when it is time to go.  The picture of the car was the most useful of all because it was the only way I could communicate that we were going to be leaving somewhere without having to pick him up and upset him.

Presumptive Placement – The presumptive placement for all students is the general education class.  Students should only be removed from the general education classroom if the IEP team agrees that it is in the student’s best educational interest to be in a more restrictive setting.
I look at is as the general education classroom being the starting point of the discussion.  Students should be educated in the Least Restrictive Environment to the maximum extend appropriate. 

Pretend Play – Imaginative play
This is just as it sounds – playing pretend.

Receptive Language – What we hear and understand.

Response to Intervention (RTI) – Visit A Family Guide to Response to Instruction and Intervention from Rutherford County Schools for more information about how RTI works.
RTI is used to identify a student’s needs and matches appropriate instructional strategies to the student’s specific academic needs.  There are three Tiers to RTI, explained in the link above.

Self-injurious – Self inflicted bodily harm.

Sensory Integration Therapy - 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. (CDC)

Speech Therapy (ST) - 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.  (CDC)

Stimming - Self-stimulating behaviors or "stimming" are stereotyped or repetitive movements or posturing of the body. They include mannerisms of the hands (such as handflapping, finger twisting or flicking, rubbing, or wringing hands), body (such as rocking, swaying, or pacing), and odd posturing (such as posturing of the fingers, hands, or arms). Sometimes they involve objects such as tossing string in the air or twisting pieces of lint. These mannerisms may appear not to have any meaning or function, although they may have significance for the child, such as providing sensory stimulation (also referred to as self-stimulating behavior), communicating to avoid demands, or request a desired object or attention, or soothing when wary or anxious. These repetitive mannerisms are common in children with ASD. (Autism Speaks)

Supplemental Aids and Services – Aids, services, and other supports that are provided in the regular education classroom or other education-related settings.
This can be accommodations or modifications, and may include an adult aid who works with the child.

Tennessee Early Intervention System (TEIS) – Serving ages birth up to age 3, TEIS helps families with disabled or developmentally delayed children connect to the supports and services they need. (TEIS)
Brandon received Developmental Therapy with an Early Interventionist, Speech Therapy, Occupational Therapy, and Applied Behavioral Analysis through TEIS, at no cost to us.

October 17, 2014

Through the Eyes of My Son With Autism

My mom loves me.  Even when I kick and scream, refuse to eat, or try to hurt myself when I’m mad.  One time right before bed I slapped her right across her face.  She didn’t get mad or yell though.  She told me “no” and put my hands by my side.  She still snuggled with me and read my books to me.

Sometimes I like to take mom by the hand and drag her around the house for fun.  If don’t whine, she does it…even when her eyes are droopy.  Sometimes I walk her back and forth, back and forth, back and forth.  I give her my biggest toothy grin.  She calls me a jokester, laughs and tickles me.

When I don’t know how to tell mom what I want, sometimes I scream and cry.  She doesn’t care if we’re right in the middle of the grocery store.  She waits for me to calm down before she helps me.  I know she knows what I want.  If she would just give it to me I would be quiet.  She doesn’t give in though…even when people are watching.

My mom plays with me a lot.  She protects me.  She kisses me all over my face…a lot…like all the time.  Even when I am trying to do important stuff like run around or watch Yo Gabba Gabba.

I show my mom that I love her.  I kiss her, snuggle with her, and I give her a big hug when she picks me up from school.  Someday I will tell my mom, “I love you;” because I do.  I just don’t know how to say the words yet.

To read this post through mom's eyes click here.

October 3, 2014

Lessons from My Nonverbal Son

Brandon has taught me so much in just three years.

He has taught me what is means to love unconditionally.  He has given me a glimpse into the love our Heavenly Father feels for us.  He’s shown me what it means to love someone so much it hurts; what if feels like when your heart is so full that it feels like it could actually burst.  There is nothing this child could do that would make me love him any less.

He has taught me selflessness.  He has shown me what it means to give your whole self to another, not to make yourself feel good, look good, or for others to notice, but solely for the happiness of that person.

He has taught me not to pass judgment.  People go through struggles and are fighting battles every day that we have no idea of.

He has taught me to keep my priorities in perspective.  We can all list our most important priorities, but do we actually live that way?  He reminds me of this every day.

He has taught me nothing if not patience - to have patience in the short term, as well patience in the long term.  He has taught me that I don’t need all of the answers right now.  He has helped teach me what it means to be still and to still be moving.  He has taught me to how to lean not on my own understanding.

Because of him I am a better person.

He has taught me all of these things without saying a single word.

Click here to read this post Through Brandon’s Eyes

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