Alphabet Magnets and Chicken Nuggets

Wandering & Autism: It Happened

2014-12-10T22:37:00.001-08:00

In just a little over a year, 41 American children with Autism have died after wandering.

I can't help but think of that statistic as he lay in my arms behind the bolted doors of our home. He is safe here.

But just an hour ago he walked out the front door. Shut it behind him. Wandered down the street. Barefoot in snowy 20 degree weather. No coat. It was maybe 3 or 4 minutes. Not long, but long enough. I have read it happening in the news too many times.

My husband runs outside in a panic to find a lady walking Trey up the street towards our house. He doesn't know who she is. Have never seen her before.

It was a miracle... and she might have been our little boy's Angel. (1/19/2014)

Our House Decor ~ Alphabet Eclectic

2014-12-10T21:49:00.001-08:00

Every room in the house has a set of the alphabet. Sometimes they are all lined up. Sometimes they are all over the floor. Sometimes they are mixed to spell lots of words. It can be a big mess ...but I wouldn't want it any other way. 💙 #autism

#hyperlexia

#embracetheamazing

Read to Me Always, Trey

2014-12-10T21:43:00.001-08:00

Trey reading a book all about cars. It's a video I found on my old phone from last summer. I love his voice! He pronounces "cars" like he has a strong Brooklyn-like accent.

He wasn't even 4 years old yet and still unable to carry on a conversation with. So the amazement of his Hyperlexia and his ability to read out loud was (and still is) absolutely priceless.

http://youtu.be/5ngCyyyx-JM

Images of Love, Hope, Autism... and My Beautiful Boy

2013-07-07T09:07:00.001-07:00

AUTISM- There are many ways to express love without saying a word.

Autism is His Superpower

AUTISM- Each day brings new light and new hope.

1 in 88 diagnosed with a disorder we know little about... Fund. Educate. Make change. Autism.

Autism. With each new day - there is new hope.

I have Autism. I see, hear, feel and express myself differently. You can't see it when you look at me. So please don't judge me. I am different. Not less...

Love needs no words (Trey with his sister Megan)

Cherish the child marching to the beat of a different drum. For they play the most beautiful music. Autism Awareness.

Autism is my superpower!

Hey! Keep staring. You just might cure my Autism. Then let's work on YOUR social skills.

I couldn't wait to teach him about the world. Instead he taught me about life. (Trey and his daddy at our first walk for Autism in WI 2012)

This is Trey. He loves trains, alphabet magnets, and chicken nuggets. He taught himself to read. He is learning to talk. This is Autism.

Autism Apps for iPad - Trey's Pick #1

2013-05-26T16:37:00.000-07:00

There are so many apps out there that are designed to help children of all ages with Autism.. it's GREAT! However, as a parent, finding the right ones to help your child, it can be overwhelming! There are literally thousands now with new ones popping up each day.

Before you spend lots of money on apps, try out the free ones first to see if it is a good "fit" for your child. As the saying goes, if you meet one child with Autism, you've met one child with Autism. Therefore, an app designed for an Autistic child, may not work for your child's needs.

Many of the free apps are basically lite or limited versions for you to try and are then given a choice to unlock sections or buy the full version. There are different type apps too.. for communication, learning, schedules, or just plain fun.

The apps we have are for an iPad, but most of them are also available for Android as well.

I have had lots of friends on my Autism Momma Facebook page ask me what Autism apps I have for my son Trey. I will feature the ones that work for him personally and hopefully they will give ideas of the type your child can benefit from. Most of the apps we have for Trey are not only Autism apps for speech and communication, but are also geared towards his love of letters, words, and reading (Hyperlexia).

TREY'S PICK #1 - "Baby Sign and Learn"

The "Baby Sign and Learn" app shows different babies signing and speaking words. It has been a wonderful app for Trey to not only learn to sign some words, but also help with his speech. He was nonverbal until just a few months ago at age 3 1/2. I love using this app to encourage his speech and communication skills!

Here is a clip of Trey using the "Baby Sign and Learn" app:

This app had a lite version for FREE from the Apple Store and to upgrade to the full version it only costs $1.99. Great deal!

The website for "Baby Sign and Learn" lists the benefits:

One of the most fundamental human desires is to be understood, research has shown baby sign language can reduce frustration for babies and parents by providing a means for babies to communicate before their vocal cords have developed for speech.
Research shows baby sign language has numerous other benefits too, such as, accelerating verbal development and strengthening cognitive skills. It also enhances child-parent bonding by reducing frustration and through fun time spent teaching signs to your baby.

I think these benefits also hold true for young Autistic children!

He Taught Me to Play in the Rain

2013-05-19T11:25:00.003-07:00

I was frustrated he ran outside this morning in the rain when I let the dogs out. It was as if he couldn't hear me yelling for him to come in.

Then I saw the complete happiness on his face enjoying a simple pleasure of life. So I began to play in the rain with him until we were both drenched. As we were both laughing so hard, I realized he taught me something today.

Life with Autism is not easy... but there is so many things in life to love!

Wow.. What a Walk! (Flashback to October 2012)

2013-03-25T19:26:00.000-07:00

On October 13th 2012, we joined thousands of people in downtown St. Louis for the annual "Walk Now For Autism Speaks". It was an amazing event!! This was their 10th walk and their biggest yet with over 20,000 people participating.

Our team shirts were designed by my daughter Jessica. She pretty much put our team together.. I was a proud momma!! She not only created the shirts and found a place to get them made, she sent out invites on Facebook and kept track of who was coming. It meant a lot to me for her to take charge.

"Team Trey" consisted of my daughters and their friends. It meant so much to me to have these young people join us to support their friend's little brother and walk for awareness! We also had my daughter's boyfriend's parents join us.. how cool is that?! It was just an awesome group!

But the one person on our "Team Trey" that inspired me the most was Dean. I work with Dean at Target. He is a 21 year old college student working there part time while he finishes his elementary education degree. Dean has a gift of genuinely caring about the development and needs of children and is always wanting to learn more. He has a great sense of humor and a heart of gold. I think Trey sensed this early on because before he could even walk, Dean was his buddy. He was one of the first people Trey made eye contact with and gave a "high-five" to. Dean didn't hesitate when I asked him to join our team for the walk!! He's going to make a great teacher one day.

"This is why I do what I do everyday! One day I am going to have my own classroom and when I make a difference in one child's life....then my job is done!" (Dean)

It wasn't just a walk. There were lots of booths with great information about Autism resources. Free food. Jump house and a giant bubble machine for the kids. Just an all-around day of fun!!

I couldn't get over how many people where there. Thousands.. all with their own story. It was sad to think Autism affected every one of these people somehow. But at the same time, it was comforting to know we weren't alone. It was the first time in many months we took Trey somewhere and knew that if a meltdown happened or other behaviors, we wouldn't be judged.

We will be back for the 2013 Walk!


Representin' Team Trey!

Proud Parents <3 br="">

My girls with Fredbird!

Team Trey's Coach

Turning Three! (Flashback to September 2012)

2013-03-15T22:59:00.001-07:00

I can't believe it's been nearly six months since I posted. Things have been good. I'm sure that's why I haven't had the need to write. I am one of those people who like to write to help relieve stress and anxiety. It's why I started this blog. When Trey was diagnosed with Autism, I had an immediate urge write what I experienced and learned. Yeah, things have been good... but I still want to share our journey. The good and bad. So I'm doing a few "flashbacks" to get caught up. Let's go back to September 2012...

TREY TURNS THREE!! (9/29/2012)

This is a big birthday for our little guy. Lot's of changes in his life are about to happen. First Steps (Missouri's early intervention system) ends and all day preschool at United Services begins.

We had our final home session with First Steps the day before Trey's birthday. Miss Amanda (OT) and Miss Merida (ST) could see the anxiety we had about sending Trey to preschool just a few days later. They assured us it was going to a very good thing.

So Mommy and Daddy decided to party it up that weekend... three year old style!! Woot! Woot! Let's celebrate! Cake, balloons, and Winnie the Pooh! We had all my kids there and some of Daddy's siblings. It was a great weekend.

That Monday was his first day of preschool. David and I took him in and dropped him off in his classroom. He didn't cry.. but he had no idea what was going on either. That made ME cry. It was so hard to leave him in a place he didn't know. He hadn't been away from David or myself since the day we picked him up from the babysitter's over a year ago when he had a terrible anxiety attack. We couldn't communicate with him to prepare him for this day. We just left him.

I had to keep telling myself that this day would be the hardest for us and the next few would be the hardest for him. The separation thing would get easier and this was the best place for him to get the help he needed to learn and develop.

Boy did that turn out to be true!! To date, United Services has been an amazing place filled with wonderful teachers that have helped Trey achieve some of his IEP goals we never thought he would. I want to write more on that later.. they deserve their own post.

For Trey, turning three was a pretty big deal! I think he handled it better than me :)

Weighted Blanket with Little Money & Lots of Love!

2012-09-16T09:51:00.001-07:00

I have wanted to get Trey a weighted blanket since learning he has Sensory Processing Disorder prior to his Autism diagnosis. They are shown to be a great sensory therapy tool using deep pressure for calming, easing stress and anxiety, sleep, meltdowns... all the things that are difficult for children with SPD and/or Autism. However, they are really expensive averaging around $100 for a crib size blanket!

Trey loves his weighted blanket!

That's when I decided to make one myself. I found a simple set of step-by-step directions online... and did it! I wanted to share this because this blanket really was easy to do! If you can sew a straight line (which is basically the extent of my sewing skills), you can make one too!!

Can you sew a straight line? Then you can make it!

INSTRUCTIONS FOR WEIGHTED BLANKET

Crib Size 36x52

Materials Needed:

Material for front and back of blanket (enough for 36x52 plus 1 inch hems)
Poly-pellets for weight (to determine how much, figure 10% of body weight plus 1 pound)
Poly-fil for making blanket cushy (1 bag)
Thread for sewing machine, scissors, fabric pencil, and iron

Instructions:

Start by cutting out your material. One piece for front (pattern) and one piece for back (solid). Cut them both the same size including 1" bigger than the size of blanket you want all the way around for hem. Then lay the top on the floor with the right side up. Take back piece and lay on top with its right side down. Sew around three sides leaving one side open.
Turn material inside-out so you have something like a pillowcase. Iron the edges down. Then sew around the edges with material right side out.
Measure the width of the blanket on the side with the open end. Divide by 6. This is the column width. Use a ruler and mark lines on the fabric with a fabric pencil. Make 6 columns running from open end to the opposite and then sew online those lines.
Next draw.. do not sew.. going the opposite direction so your material is covered with squares. Do 6 rows as well using the same formula as above.
Figure how much weight will be put in each block. Count the blocks and take amount of weight you want in ounces. Divide by the number of blocks you have. If you have 36 blocks and want a 4 lb. blanket, divide 36 into 64 oz.. this would be 1.77 ounces per block.
Start by putting enough poly-pellets for one block down into each column then stuff a little poly-fil on top. Now sew your line that goes along the top of that row of blocks. Repeat again and again until the entire blanket is stuffed.
Once you get to the end, take your open end and fold edge down towards the inside. Iron to make it neat and flat. Then sew directly on top of the fold all the way around the blanket edge for extra durability.

Weighted Blanket with Thomas fabric

CLICK HERE FOR PRINTABLE INSTRUCTIONS WITH ILLUSTRATIONS

You don't need mad sewing skills to make this blanket. It was just as easy as it looks. I think I spent a total of $30 on the material, pellets, and stuffing. I could have saved a few bucks on fabric, but I had to get the "Thomas" fabric. :) It was worth making this special blanket for my special little boy. I just couldn't afford buying one at retail prices. This blanket was made with little money and lots of love!!

92% of Autistic Children Wander.. Today My Son Did.

2012-09-01T21:42:00.002-07:00

(Trey is 2 years and 11 months old)

1 out of 88 children has been diagnosed Autistic.

92% of Autistic children wander.

The number one cause of death among Autistic
children is drowning.

My heart stopped. I couldn't breath. I was downstairs for maybe two minutes.. just long enough to throw the clothes from the washer into the dryer and bring up the dry clothes. I have done this a million times while Trey played in the family room watching television. This time was different.

I walked into the family room and dropped the basket of clean clothes. I remember screaming "TREY!!!!"... as I shockingly notice the front door wide open. I ran outside. No Trey. I ran to the side of the house.. back to the front.. looked up and down the street. No Trey.

I scream his name over and over even though I knew it wouldn't make much of a difference. He rarely responds to his name. I am now in a panic.. I need to call my husband. I need to call 911!

Then I see him... wandering in the neighbors yard across the street and down a couple houses. He is singing.. spelling random words to a tune. He is in his own happy world. I run as fast as I can to him, scoop him up, and bring him home. Tears are falling. I am so grateful and still so scared.

I close the front door behind Trey and start to cry. The neighbors house he went to had a pool in the backyard. All of the "what if" scenarios began running through my mind...a car, the pool. I can't help but think of all the stories with unhappy endings and broken hearts of little Autistic children gone missing and drowning. I never thought it could happen to my son.

Trey looks at the front door and points to the word on one of the note cards we have taped all over the house identifying objects. He says "D..O..O..R. Door! Ma I go!"

Words all around the house!

"Door!"

Yes, baby boy, you did go out the door... and if I can help it, you will never do that again alone!

******************************

The AWAARE (The Autism Wandering Awareness Alerts Response and Education) organization reported that according to data released in April 2011 by the Interactive Autism Network (IAN) through the Kennedy Krieger Institute (KKI):

Roughly half, or 49%, of children with a autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number
Two in three parents of elopers reported their missing children had a “close call” with a traffic injury
32% of parents reported a “close call” with a possible drowning
Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings
Half of families with elopers report they had never received advice or guidance about elopement from a professional

In 2012, the National Autism Association found that from 2009 to 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism subsequent to wandering, and that 23% of total wandering-related deaths occurred while the child was in the care of someone other than a parent.

I love and cherish moments when he will hold my hand...

The Mason Allen Medlam Foundation is working towards much needed help for these Autistic children who wander. They are wanting to instill an alert system similar to the Amber Alert already in place.. but geared towards Autistic children and young adults.

"We are working to get an alert in place which will be known as the "Mason Alert". Unlike the Amber Alert, this alert would be geared toward autistic children and adults. When a normal child disappears, most of the time the reasons are benign. They went to one friends house instead of the one they were suppose to go to, they went to the park instead of going straight home, ect., ect.

When an autistic child wanders or disappears, the immediate response should be a heightened state of awareness, and an instant realization of the danger that child is most definitely in. Due to their condition, all autistic children to one degree or another lack the ability to recognize danger signals.

They will walk into a busy intersection, despite traffic. They will walk through an open front door, not knowing if a predator is on the other side. They will hide in tight, enclosed spaces, not realizing the danger of suffocation or heat stroke. They will walk down a mile of railroad tracks, not realizing the train they love so much can kill them, and they will wade into the middle of a muddy pond, never thinking that they can't breath the muddy water.

We are hoping that the "Mason Alert" will help to educate authorities and also provide them with EVERYTHING they need to help us when one of our children escape. Many people may say, "Escape? How can that happen if the child is really being supervised?"

Let me just say this. Since my son died, I have been contacted by hundreds of parents of Autistic children, and not one of them have asked me that question. Just because a child is autistic doesn't mean he or she isn't brilliant and creative in his or her own way, and the number one outlet seems to be figuring out every safety lock ever invented. You put one type of lock on your door, and within a couple weeks you are out buying something else because your baby figured out that he can un-slide that lock with a broom, or if you push both sides together you can get the knob to turn. A normal child learns limits as they grow. They learn that leaving the house without mom and dad could mean they might get hurt. Unfortunately, that is a very difficult lesson to teach an autistic child.

We want the Mason Alert to immediately provide authorities with the following:

A current picture of the child.

Child's address and Contact information.

Their fascinations: i.e. railroads, small spaces, water

Locations of all nearby hazards such as tracks, pools, ponds, abandoned houses, busy intersections.

Notify if the child is verbal or nonverbal. This is very important, because when we search for someone, we tend to stand in one place and shout the person's name. A nonverbal child won't respond to this AT ALL. When I arrived home, the police were shouting Mason's name. I could have been standing right beside him, shouting his name and not gotten a response.

How the child reacts under stress. i.e. do they hide, do they run, do they fight, do they shut down and just stand still.

And finally, how to approach the child and who needs to approach the child. In some instances, authorities will just have to immediately react if the child is in immediate danger, but in other instances, it might be better to wait for a parent or caregiver, and taking this step might help eliminate danger.

By signing and passing this around, you may just be saving someone's baby. I wish that this had been in place for my son. Instead of holding him in my arms each night and loving him, I kiss his picture and say a prayer and go to bed crying. I don't want any other mother to endure that. God bless you all. "

Please CLICK HERE to read more about the Mason Alert and sign up!

Apply For Today @ National Autism Association's Website

The Weekend Lineup!

2012-08-26T19:28:00.000-07:00

(Trey is 2 years 11 months)

This weekend was all about lines.. ok, so everyday is all about lines but I took pictures this weekend of his beautiful creations. Trey lines up everything! Sometimes it's a certain order.. sometimes it's just a line of things. I know this is a very common "Autism thing".. but why do they do this??

He has magnetic animal and cars on the front door. They are supposed to be matched and put in their holders to make sounds... but Trey just lines them up.

Trey's "go to" lineup.. his all time favorite.. the weekend wouldn't be complete without it. His ABC's in order! I like the cute little twist he put on it here with the V through Z tumbling down. Normally he has to have them in a continuous straight line and he makes sure they are all perfectly even.

Books. He grabs all the books around the family room.. his books, Daddy's books, Mommy's books. He lines them up in no particular order and studies them. He might be reading the titles, not real sure... but Daddy decided to get rid of the "Jeffrey Dahmer Story: An American Nightmare" just in case!

Numbers.. look real close. They are perfectly 1 through 18! I love this..

I found him a set of sight word flashcards at a garage sale a few months ago. Within the last week or so, he has really taken to them. He is like a little sponge learning new words everyday. He knows many of them.. probably more than he can speak. Trey speaks about 6 of these words really clear.. the others he tries but can't. Yet..

So why is lining up toys/objects a common behavior with Autistic children?? Not saying that all Autistic children do this.. or that children who do are Autistic. I know it could go either way.. but it is known to be very common. Well, according to Autism Speaks.. this behavior is defined as "Restricted Patterns of Interest:

Restricted Patterns of Interest
Restricted patterns of interest refer to a limited range of interests that are intense in focus. This may also be referred to as stereotyped or circumscribed patterns of interests because of the rigidity and narrowness of these interests. This may be particularly apparent in very verbally fluent children with autism or Asperger Syndrome who often become obsessed with a single topic for months or even years. Restricted interests, obsessions, and compulsions can interfere with a child's normal activity or social interaction, and can be related to anxiety. In young children with ASD, similar restricted patterns may be evident in repetitive movements with objects. Rather than playing with toys in simple pretend play, or using objects in appropriate ways, children with ASD line up or stack toys or objects in the same way over and over again, persistently knocking down and rolling objects, or wobbling or spinning objects, and/or may show an intense focus and interest in how these actions or objects look.

This does make sense to me. Trey does have an intense focus on what he lines up.. and it always has to do with letters/words or objects to count. It is also something he has done to relieve anxiety or can be instigated by us if he is having a meltdown. We know it is very calming to him...

I believe Trey (and perhaps other Autistic children) line up toys or objects as a way to gains some control and order in their world... a world he struggles to adapt his senses to and communicate in everyday.

The Final "First Steps"..

2012-08-25T17:48:00.000-07:00

Trey doing a matching game during OT

(Trey is 2 years 11 months)

We are down to just a few more visits to our home from First Steps. During his OT visit today, I celebrated how far he has come.. and didn't dwell on how far he has yet to go.

First Steps is Missouri’s Early Intervention system for infants and toddlers, birth to age 3, who have delayed development or diagnosed conditions that are associated with developmental disabilities.

First Steps has provided Trey with Occupational Therapy 1-2 times every week and Speech Therapy once a week since February of this year. I looked back and realized the growth and progress Trey has made during this visit today.

During the past six months, Trey has less meltdowns and more words. He is communicating better with us which means he isn't as frustrated. He went from speaking zero words to now asking for what he wants by either signing or speaking the word "more".

Trey matches by reading the words.. not by matching pictures :)

Just six months ago, he made zero eye contact and never responded to his name being called. Now he will follow simple directions every now and then. To us, this is huge!

He has developed a passion for letters and numbers.. known as Hyperlexia.. that completely amazes us everyday! He began with recognizing letters and numbers. He then began putting them in alphabetical and numerical order. Now he can spell up to 8 letter words and is beginning to read.

Trey listening so well and sitting down for Miss Amanda.. his OT!!

Trey has come a long way and we are so proud of him! He has about a month left with First Steps. This time next month we will not only be celebrating his 3rd birthday, but also preparing ourselves for Trey's next chapter... PRESCHOOL!!!

I love this video of him playing a matching game with Miss Amanda during his OT session!!

Entering Through the Special Education School Door

2012-08-17T22:56:00.001-07:00

(Trey is 2 years 11 months)

Well.. here we go! We are now entering the St. Charles School District public education system. I went through the same district, my twins graduated in 2011 from the same district, and my daughter Megan just started 8th grade in the same district. I know no other school district and I have had nothing but good experiences as a student and a parent there. I was even a substitute teacher in the district for 2 years after I received my Associates Degree in Education. I have very good friends who are teachers there. But I never thought in a million years I would be where I am today.. about to enter this district through the Special Education door and head down the long hallway of evaluations, IEPs, and advocacy.

On Wednesday, David and I had our initial evaluation interview with the St. Charles School District-Special Education Department. The purpose of this interview was to determine what testing Trey will need to determine 1) whether he has a particular category of disability 2) his present level of performance and educational needs and 3) whether Trey needs special education and related services.

After the two hour interview, it was decided that Trey needed testing in the following areas:

HEALTH/MOTOR: Sensory concerns, foods limited, sensitive to loud noises, tactile concerns, movement concerns, fine motor and visual motor concerns.
SPEECH/LANGUAGE: Diagnosed with receptive/expressive language disorder, limited phonetic inventory, simple routine and one-step direction limited, very limited expressive language.
INTELLECTUAL/COGNITIVE: Does not ID colors, does not point to pictures or body parts upon request.
ADAPTIVE BEHAVIORS: Uses no utensils, does not use cup with straw, does not undress, does not wash hands.
SOCIAL/EMOTIONAL/BEHAVIORAL: Limited pretend play, does not play with other children, does not share, transitions are difficult. not easily directed by parents.
ACADEMIC ACHIEVEMENT: Does not give name, age, or gender. Does not point to pictures upon request. Does not ID colors.

The next step is the actual evaluations of Trey that will be done by the special school district and United Services (special education preschool contracted through the school district). They will test using the DAYC Assessment with informal play and observation.

Then Trey will be heading off to preschool...more than likely all day, 5 days a week to receive all the services he will need. The district's plan is to have him eligible and attending by his 3rd birthday (9/29) because that is when the services with First Steps stops.

All this has David and I super nervous for him! We know it will be the BEST thing for Trey. We know the importance of early intervention for Autistic children. We know he will flourish!! It is just going to be an adjustment I am sure... we get teary-eyed thinking about it. After leaving the interview at the school, we had a reality check on just how delayed Trey is in so many areas. Yes, we have seen improvements since he was diagnosed in April... I mean, look at this kid! He knows all his letters, numbers up to 20, and spells over 35 words! He amazes us everyday.. but, yes, very delayed in many areas.

We love him more than words can express. We don't want to change who he is or "cure" his Autism. We just want to do whatever will make his life better. So I am now ready to begin this journey with the St. Charles School District.. putting my faith they will have my child's best interest at heart for the next 14 years.

The STL Staycation Learning Experience

2012-08-16T22:39:00.002-07:00

There is certainly a lot to see in St. Louis! So when my hubby's older brother and family came to town from Wisconsin for the past few days, we wanted to show them as much as we could. You know, do the typical tourist type stuff..by usually going to places you only visit if someone comes from out of town. It is fun to see places that we are close to yet never pay much attention to because we live here...so it becomes like our own "staycation" as well!

The last time we did the STL staycation thing was when his younger brother and sister came to stay with us for a couple weeks. That was about 4 years ago... before Trey. So this time we had some challenges. As with many Autistic children, Trey is very sensitive to noisy places which becomes challenging when taking him to certain public places. He is also very routine oriented and doesn't tolerate too many changes from his daily schedule. However, we don't want him to not experience new things.. we have always had the "well, let's give it a try!" attitude with him. If it doesn't go well, we can leave and just say we tried. Sometimes we end up leaving.. other times Trey surprises us and does great. We had a little of both this week.. but overall it was a really fun week. I must say, it certainly helped having such understanding and loving family with us!

Day 1: First stop was the St. Louis Zoo! This has always been one of my favorite places since I was a little kid. It was a perfect day in the 70's and cloudy.. so all the animals were out. Trey did great riding in his stroller (this does not happen often!) but as usual, he didn't pay much attention to the animals. His 4 year old cousin, however, loved the bears, giraffes, and especially the train... it was fun to see him so excited! Then something amazing happened that day at the Penguin exhibit.. Trey seemed to connect to a little penguin. He just sat for a bit and looked at him. He seemed to really study him. The little penguin didn't even move and it seemed he was looking back at Trey. It was the first time Trey actually noticed and showed interest in an animal at the zoo.

Trey and his penguin...

Chase says "Cheese!"... Trey says "F!"

Trey didn't quite last the whole walk around the zoo. He got a good 45 minute nap in too.

Sleepy boy and his blankie

Since the morning went so well, we decided to make our next stop the Gateway Arch. It was so cute helping Trey walk up the big steps to the Arch. We decided to just take pictures outside and walk through the Arch grounds. Trey wanted to run. I let him run a little in the open field under the Arch but then he kept wanting to run back to the big steps. It made me pretty nervous! I could just see him tumbling all the way down. He didn't want me telling him "No" so he started having a meltdown. The type of meltdown where I couldn't console him or even pick him up. I knew people were staring wondering what was wrong with him. Daddy finally got him calmed down enough to start our walk back to the parking lot.

Trey climbing up the Arch steps

Day 2: Our nephew loves dinosaurs so we decided to go to the St. Louis Science Center. It was Monday morning so not very crowded. The stroller would have been difficult in the building so we decided to put the monkey leash on Trey and let him walk around. It was fun seeing him interested in a few things like the tornado display and a big lighted globe. We were able to look around for a little over an hour.. or maybe it was two. I lost track of time in there. It was the last stretch through a tunnel-like hallway to the space memorabilia display where Trey had enough.. another meltdown. Daddy scooped him up sideways and we walked towards the exit as fast as we could. I was walking behind feeling sad to see Trey so upset and watching people turn and stare towards the screams. When he got to our van and into his seat with his favorite show on the DVD player, he was a happy boy again.

He found an activity with numbers

Rawr!

Then we all decided to go to the mall for lunch and look around the big Cabela's store. Trey had a little nap on the way. We saw the big fish tank and animal display at Cabela's.. had lunch in the food court.. then headed home. Trey clearly had enough excitement for one day. Hubby's brother, wife, and little guy stayed and did some shopping. I am so glad they did. I didn't want them to ever feel like they had to leave when we did. I just wanted to try and take Trey to do things with them as much as he was able.

Day 3: How about a picnic lunch on the riverfront and then stroll through the shops on Main Street? Well.. kinda. Trey fell asleep in the van on our way to get sub sandwiches. So I stayed in the car and ate my sandwich... which was good for him to get a little rest. This helped us have a nice stroll down Main Street after we ate.

That night it was dinner and games at Chuck E. Cheese!! Trey loved the train and even rode his first ride! He has never wanted to before... in fact, he screamed last year when I tried putting him on anything. So it was a big deal to see him actually do it! It may have been only because it was a big clock with lots of numbers. Whatever it takes is ok. We were so proud of him!

Overall it was a great staycation!! It was wonderful visiting with our family and watching Trey experience new places and things. We are learning how to let our son experience new places and knowing when it's time to leave. We are learning the importance of family and friends who understand how difficult that can be sometimes and still support you. We are learning not to let other peoples stares or judgements bother us. We are learning how to improvise plans to make them still work.

We are learning to appreciate and cherish the little things like a penguin or a ride on a clock...

All ABC's, Silly for Signs, and Nuts About Numbers...That's Hyperlexia!

2012-08-06T20:23:00.001-07:00

I have learned two things about Hyperlexia. I have learned (1) a basic understanding enough to realize Trey is definitely Type 2 Hyperlexic.. and (2) there is not much out there about Hyperlexia to learn. Not a lot of information comes up when you "google" it...but from what is documented it seems, like Autism, to be quite a mystery as to why it happens.

I was recently asked if I wanted to join the "Hyperlexia Parent's Network on Facebook" group.. boy, am I glad I did!! This is an entire group of 243+ people who have Hyperlexic children (most with Autism/Aspergers as well) that amaze me too!! I have learned a lot about Hyperlexia from this group.. and from the stories of their children. I think you learn more about something from others who are living it first hand. I just HAD to share some of them!

ALL ABOUT THE A,B,C's:

You know your child has Hyperlexia when...

T: We get lots of strange looks when we take him out, because he reads every thing- signs, goods, peoples T-shirts lol. He looks just like a typical 3 year old. I think people think I'm one of those really in your face parents that force their preschoolers to read early, but I have never taught him. He also does not know what to do socially, when my parents visit he jumps up and down in front of them and then grabs them by the hand and gets them to stand in a certain way to make "letters" out of them lol. He tried to paint a picture for them, I said paint grandpa so he painted the word "grandpa" not a face.

Q: My son is 3.5. He seemed pretty normal until about 15 months when he simultaneously became very difficult to deal with and extremely fascinated with numbers and letters. He taught himself all of the upper and lower case letters, the sounds they make, and how to write them (repeatedly on my walls).

A: My son writes words constantly with his pictures that are up to 3 syllables. Recently he has began occasionally writing words in mirror image where the letters are all backwards and the sentence backwards so if you look in the mirror they look normal. He constantly does this thing where he makes a fist with his index finger out and waves it up and down in front of his face. Some times he does the same with a toy or other objects (like french fries) He stares at it intently while he's doing this and usually spins in a circle and wanders around staring at it intently.

SILLY FOR SIGNS:
M: My son likes stops signs and the word stop, but man, EXIT signs make him giddy. A few weeks ago, while driving around I heard my son say, "yeeeeeeled" and I was puzzled asking him to repeat it until I figured out he had read a "yield" sign. It was so cute. But I haven't heard much more than that. EXITS are still his preference. At restaurants when he'd been unruly, I've resorted to looking for youtube videos, and wouldn't you know, there are actually several-minute-long clips of people showing off EXIT sign collections.

K: My son liked STOP signs when he was younger. I tried to take it as an opportunity to show him other signs, including safety ones, but he wasn't interested if they don't have words. Then he moved to other things... now he is into street names.

P: My son never fails to notice a subway station and what trains are listed as stopping there. "There's a subway station! The N train and the Q train!" He'll be navigating around NYC by the time he's 4 I think.

Trey's favorite sign too... "S-T-O-P!"

L: My son got fixated on car logos, you know the silver icons on the backs of cars -- he knew them all and what they stood for and he would traipse longingly through a parking lot just examining each one. That Christmas I figured out I could get them relatively cheaply on eBay -- he nearly FAINTED when he pulled some out of his stocking. It was so worth it.

B: My son has had a fascination to signs generally since he was a toddler. He liked EXIT, STOP signs, even traffic lights and directory center maps. We always had to stop for a minute so he could memorize the diagram or structure of the map figure then he would later draft them at home and showed us (read) repeatedly what places/stores etc we had visited. At times it was store slogans, so if we drove by Walmart or any other store he would say: "mom: save money, live better at Walmart" and so on... lol. Even now that he is nine years old his fascination (more moderate though) is for commercial transit carriers. So imagine if it's a FedEx carrier for example he still prompts me "Mom look it's a FedEx truck" and then goes on to find the guy and asks him all sorts of questions about the number of routes, packages, distances in miles, time but all having to do with numbers and points of reference. Everything he does is mesmerizing to us. :)

L: My son also has always loved signs of any kind. He's been quite the backseat driver for years (he's 7). Lately, he's been drawing pictures of traffic lights and placing them strategically around the house and then trying to be the traffic enforcer. I just let him draw as many traffic lights as he wants. This, like everything else, will pass and he'll be on to the next thing.

NUTS ABOUT NUMBERS:

B: My 5 year old, who will be starting kindergarten in 2 weeks just said, "11, 22, 33, 44, 55, 66, 77, 88, 99, 100, that's how you count by equals". Wow!

M: Once my son wrote "50,100,150,200,250, engine power" - we realized a few days later he had been doing a car speedometer.

A: We were at a birthday party on the weekend, and while every other kid at the table was gearing up to sing Happy Birthday, my 4 yr old was loudly and excitedly counting in multiples of 5. He got to 105 before the singing started. We told him this morning that we were going to a fete (festival). His response (excited): "And there will be numbers there!" As long as he finds numbers...and there are ALWAYS numbers...he is happy.

INTERESTING OBSESSIONS:

T: At age 11 the individual numbers and letters persist !! So much so that he tells us what number and letter each day is brought to us by (Sesame Street style) first thing in the morning and last thing at night. The school encouraged him in woodwork by letting him cut and paint his own wooden letters and numbers. He pulls them out and shows us in conjunction with the spiel "Today is brought to you by the letter _ and the number _." Every morning and every night !!!

P: My son is currently into counting in French, flower names and watching classic episodes of Electric Company. He'll break out singing "Easy Reader" and '"Silent E" at all hours. For a while, he was really into jazz musicians ... really, it's whatever book has caught his fancy, and usually books that catch his fancy involve some aspect of categorization.

C: My son mainly obsesses about learning how to spell people's names he comes into contact with. When he was 3 he knew how to spell all of his classmates names and alphabetize them. Three years later he still does this but now he wants to know it in a foreign language and write it in cursive.

The toilet story makes me laugh!

L: The way we got my son potty trained was to introduce him to different styles of toilets and how the plumbing and mechanics worked. So, the electric eye toilet, the urinal, the low water flush toilet -- he used to fill pages with toilet schematics and he became very interested in flushing -- of course he could only flush when he went to the bathroom in one. Of course he became obsessed with seeking out new toilets wherever we went, and any time we went into a store or restaurant he had to go check out the toilet immediately. I remember we were out at a restaurant and there was one of those old "water closet" style toilets with a chain you pull and a reservoir near the ceiling -- it blew his mind!

My "Mr. Spanky McNuggets" has his own obsessions. He has loved the A,B,C's since before he was 2 years old. Even though he has branched out to spelling words now, he still loves his letters!! For the past couple months, he has been crazy about this alphabet canvas picture that we bought him in June. He literally carries it around with him everywhere in and out of the house. He says the letters over and over. I made the mistake once of trying to hang it up on the wall where he could still see the letters.. but that caused a BIG meltdown. He wants to hold it, sit on it, carry it, read it..

One day in June at Target, he didn't want a toy.. he wanted this picture!

When I went out to get the newspaper this morning, Trey came too.. with his picture.

**If you have a child/grandchild that you believe may be Hyperlexic and would like to join the Hyperlexia Parent's Network on Facebook, please feel free to send me a message on my Facebook fan page at https://www.facebook.com/treysautisticjourney **

I see your stares, I hear your whispers..

2012-08-01T21:35:00.001-07:00

I made this picture of Trey just a few days ago. I love this picture.. it shows him with such expression! I love the words too because unfortunately it is something we have to deal with all the time. Little did I know how appropriate it would become this week. While I was at work today, my husband sent me a text:

David: Took Meg home and found two ABC foam letter sets at Salvation Army for $.99 each for Trey.

Me: Oh boy, more letters! lol

David: So those letters I bought let do a meltdown at the grocery store.. I swear everybody looked at him. I never felt so many disapproving eyes on me in my life. I didn't notice he dropped the letters and he screamed like he was being hurt.

Me: Disapproving eyes?? Who?

David: Trey was screaming and thrashing in the shopping cart. His letters had fallen under a shelf and I didn't see them and like 10 people just stared and shook their heads. It was like they were thinking Trey was spoiled and out of control.

Me: Oh, that makes me so mad! Maybe I should print off those "My child is Autistic" cards to hand out? Other parents do.

David: I was very mad. We left right away. I'm calm now...

Trey has been better about shopping. As long as the trip is fairly quick and he has a sippy cup, Thomas train, or a few ABC letters to occupy his time, he does pretty well. But it's a fact.. meltdowns will happen sometimes. Now that he is almost 3 and not a little baby, we certainly notice the stares and judging looks from other people. It makes us angry.. and defense mode kicks in. You just want to go off on them and tell them why when they roll their eyes or shake their heads in judgement, just how wrong they are!! But we don't.. because all our attention is on our son and what we need to do to help him in that moment.

So, yes.. I think it's time to print off some cards. I think it's another step towards Autism awareness that needs to sometimes be taken into our own hands as the parents of Autistic children. The actions of the ignorant does make us very angry.. but most of all it hurts deeply.

It hurt my husband today. He said he was very mad.. but I knew it hurt him too. When I got home from work, he shared something he wrote earlier in the day after the grocery store incident.

NO BETTER (written by Trey's Daddy)

I see your stares, I hear your whispers,
It’s apparent you think I am a bad parent.
You think my child is so bad, just because he is screaming mad.
I just tell myself you know no better.

His ABC’s have fallen where I can’t see.
He screams and kicks because he wants his letters.
Why are you so upset? He doesn’t know no better.

Your stares continue, your whispers remain .
God, Sometimes I feel like I’m going insane.
I wanna scream he’s Autistic!
Why do I always get so ballistic?

Lord grant me the patience
to handle the ignorance.
Just like Trey, they know no better.

Daddy's boy <3 br="br">

These words brought tears to my eyes. I could feel the hurt and I understood how he felt. Our little boy means the world to us.. he is beautiful, smart, and has the best sense of humor. He is Autistic and we wouldn't want him any other way. It's time to stand up for him!

All Alphabets, Toes, and Smiles Today!

2012-07-27T21:22:00.001-07:00


Trey saying the letters and pointing with his toes :)

It was a quiet Friday evening at home. Daddy was busy with work stuff so just Trey and I hung out. He got out all his alphabet magnets and foam shapes, which is pretty much a daily activity. He made 3 rows of complete A-Z letters. Wow! I have not seen him do this before... I had to take pictures, of course! When I take pictures, it makes me want to write. So I wrote a little ABC poem for Trey and it goes something like this...


Numbers and Letters, Oh My! That's My Family Room!

A..accept you as you are

B..I believe in you

C..it's ok to cry sometimes

D..dream big, little man

E..envisions the whole of you.. not with a missing piece

F..forgives those who show hurtful ignorance

G..go for it

H..I will help you


Trey was busy making rows and rows of letters...in alphabetical order, of course!

I..inspire someone

J..just always be you

K..I keep you close in my heart

L..loves you for who you are

M..you've made a difference in my life

N..never alone you'll be

Busy, busy boy... <3

O..one in a million to me (not 1 in 54)

P..pick you up

Q..quiet your fears

R..raise your spirits

S..shake your booty to the music

T..you have taught me so much

U..I understand you

V..very proud

W..I will walk beside you on your journey

X..excited to watch you grow

Y..you are amazing

Z..zucchini when it's breaded and fried tastes a little like chicken nuggets

He spelled a new word...TRAIN!

Sensory Processing Disorder and the Little Booger

2012-07-22T21:13:00.002-07:00

(Trey is 2 years 10 months old)

While watching "Little Einsteins" Friday morning, I noticed Trey kept messing with his nose. Finger in.. finger out.. finger back in. After a few minutes of this, he pulls out a little boogie on the tip of his finger. He looked at it for a second.. and before I could process the possibility of him actually doing what most 2 year olds would do.. Pop! In the mouth it went!

What??!! Oh my gosh... Trey is eating a booger!! But it's squishy! (I am quiet while I see Trey chew it for a second) I can't believe he put it in his mouth!! It's so grosssss... yet, I was proud at that moment. Good job, little man!! Way to take a risk and try something completely different texture-wise!! (I see him make a face.. I am still quiet. The face is of complete disgust.) Uh oh.. I think it's down. He ate it... grossssss! Yet, maybe this means he will be open to try new things?! Maybe he might try noodles, or grapes, or.. *gasp* applesauce. That would be amazing! He always gags when you try to give him applesauce. He gags when he sees someone eat applesauce.

Along with the Autism, Trey has SPD (Sensory Processing Disorder). I have talked about his stimming in another post, but along with that he is a very picky eater and does not tolerate certain textures at all! Over the last 5 months, his Occupational Therapist has tried to introduce new foods with different textures. But this is one area he has made zero progress. We hope that working with getting him to touch more and more different textures (like finger painting, play-doh, etc.) will hopefully lead to eating.

http://www.facebook.com/ALegionForLiam

So you see my shock of somewhat pure joy when the little boogie went into his mouth!! Woohoo!! Progress.. right?!

Me and my baby boy

Then with his facial expression still showing complete disgust, he walks over to me calmly. Grabs my hand. Then he proceeds to open his mouth wide and force my hand into his mouth. If he could talk he would have said "Get the boogie out!" So I wiped his mouth as best I could until he was content.

Yes, I think it was progress.

Deal with Autism "Stuff"... but Enjoy the Amazing Moments!

2012-07-18T18:06:00.000-07:00

(Trey is 2 years and 10 months old)

Trey has spoke the numbers 1-10 for several weeks now.. but I thought for sure it was just memorized words without knowing the concept of actually counting. The past week or so has proved me wrong. He is counting.

He lines up toys... he lines up toilet paper rolls... I have even seen him line up peas (he isn't eating them yet, but at least he is touching them!) and he counts them all. Sometimes he will just hold two objects and say "One.. Two.. One... Two.." over and over. The highest number he counts to is 20. His pronunciation isn't the clearest. That's just part of the language delay. But I sure love seeing him try! I filmed him tonight counting little yellow squares...

Letters and numbers sure keep this boy happy! He is like a sponge soaking up new words, numbers, and concepts all day long. Each day we see new things with Trey and it is so exciting! It helps with all the worries and fears we feel for him.

He lines them up and counts them! I can't throw away! :)

He has struggled with behavior and following simple directions a lot lately.. especially when Miss Amanda the OT is here. I know she is here to help Trey... but he doesn't! It's hard to see him have complete meltdowns when a new food, a new texture, or a simple direction is asked of him. It's even harder realizing he can't speak the words he wants to tell us.

So we take it day by day... enjoy the amazing moments and do our best dealing with all the other Autism "stuff". Trey's Daddy and I have no idea what the best way to handle every situation is... does anyone really? We just do the best we can, read all about it, and reach out for as much help as we can get! We are on the same page when it comes to Trey and his Autism... (super duper important) ... we both love our little boy and want the best for him!

The ABC's of Our Life!

2012-07-09T21:25:00.002-07:00

(Trey is 2 years and 10 months old)

Alphabets are everywhere in our house! You can't walk into a room without either stepping on a letter or seeing them stuck on the walls. I guess you could say we have encouraged Trey's ABC obsession.. but how could we not? He has alphabet magnets, puzzles, bath toys, blocks, apps on our phones, books, flash cards, stickers on his wall, etc..

Trey loves them all! He is learning to spell and read. I also really believe his language has improved too because of them. He spoke no words for the longest time.. only letters. Now he is starting to say the words he sees. It's exciting to see from week to week how much he learns!

The ABC obsession has affected the entire family too. I am often caught singing the "ABC" song randomly around the house... both classic and "Super Why" versions. Sometimes long after Trey has been put to bed, I find Daddy intently watching Alpha Pig on T.V. (It's true.. don't deny it, honey)

One of Trey's new words

The other morning my daughter Megan came out of her room to a family room completely covered in plastic alphabet letters.. half asleep, she stepped on a couple. "Ow! I'm so sick of the alphabet!" I just gasped at thought she would say such a thing! Then Trey yells out the letters she had stepped on... "E!... Y!" We all just started laughing!

Uncle "Cooey" (as Trey calls Daddy's brother Cody) who has only been living with us for a couple weeks, knows all the alphabet songs and is an expert at putting together the big alphabet train puzzle... over, and over, and over.

Trey and Uncle "Cooey"

I know this is a phase and it will one day pass.. but right now I love it. With all Trey struggles with as far as communication and sensory and all things Autism, I get so much joy watching him completely happy with his letters!

Learning sight words with help from Meg!

So proud of his words!!

My Two Cents on Fitty Cent

2012-07-08T10:39:00.003-07:00

Fitty Cent... aka 50 Cent... aka Curtis James Jackson III.. and is now aka the most hated man in the Autism community. My twins (now 20 yrs old) listened to his music a little bit back when he was a big deal.. so like the "hip" mom I believe to be, I liked a couple of his songs. Whatever you want to call him, he is quite a successful guy with an inspiring story.

He grew up in Queens, NY, began dealing drugs at age 12, then left that to pursue a career in rap music, he was shot nine times and lived, then he was discovered and became a huge success with the help of Eminem and Dr. Dre. Oh.. and see what I did there? I did a little research and educated myself on Mr. Cent before I made any comments about him!! Something he obviously never did before he made his ignorant mistake last week.

So thanks to an extremely popular social utility on the internet known as Twitter, we got to witness first hand just how ignorant Mr. Cent really is. If you think it's no big deal.. you are wrong! This rapper has over 6.5 million followers on Twitter alone (more research there!) so when he "talks", unfortunately a lot of people are listening. In case you don't follow his tweets or didn't see it in the news, here is what he said:

Do you think Mr. Cent knows what it means to "look autistic"? Do you think Mr. Cent knows what Autism even is? No and no... he certainly doesn't. This is the problem and why Autism awareness has become so important to me in addition to getting help for Trey. Mr. Cent is by far not the only one who believes this way.. this type of ignorance is EVERYWHERE! As a parent of an Autistic child, I see it and hear it and read it everyday. It hurts like hell!! It hurts because I do not want my son to EVER be hurt by ignorance! He is young.. almost 3.. and doesn't know about how cruel people can be. It hurts to know one day he will.

50 Cent

Mr. Cent.. whether he likes it or not.. has now become the National Spokesperson for Ignorant Assholes to the Autism community. He is popular.. a famous celebrity so naturally there will be a lot of backlash against him. Many have posted and blogged their feelings about his comments.. including another celebrity Holly Robinson Peete who has an Autistic son. I think he deserves every bit of it!! He is the one who made the mistake.. so own up, be "a swag gansta", and APOLOGIZE, Mr. Cent! Why hasn't he apologized? Or better yet get educated on Autism? His silence is almost as hurtful as his comments.

THE BACKLASH (just a few.. there are so many!)

So that's my two cents on the whole situation.. and some links to others. In closing, I would like to address Mr. Cent by letting him know that the "look" of Autism is actually very beautiful!

My Son is Beautiful, Smart, Funny... oh, and Autistic <3

Hello.. My Name is Autism.

2012-07-02T19:39:00.000-07:00

Hello.. My name is Autism.

Perhaps you know me or know of me. I am a condition, a "disorder" that affects many people. I strike at will, when and where I want. I leave no marks on those I strike. In fact, I pride myself on the ability to infiltrate a child's life, while leaving him or her strikingly handsome. Many people may not even know I am there. Some people blame the child for what I cause him or her to do. I do as I please.

I am Autism. I strike boys and girls. I find my best victims to be boys around the age of 2, but any child will do. I affect one child and "infect" the entire family.

I am Autism. I strike rich and poor alike. The rich combat me with education and therapy. The poor shut their children away and cannot afford to fight me. I am able to win in the lives of poor children more than I am those of the wealthy, but I will try to take root anywhere.

I am Autism. I am an equal opportunity disorder. I strike all races. In fact, I strike everywhere on Earth. I know no geographical bounds. I do not discriminate based upon religion either. When I strike, there will be little time for any of that anyway. When they find me, they will question everything they believe in, so why would I strike only one group? I have affected followers of every religion on the planet.

I am Autism. I am strong and getting stronger every year, every month, every day, every minute and every second. I am concerned that money might be allotted to combat me but so far, I have little to fear. Some countries like the United States , would rather spend money on such ludicrous things as opposed to combating me.

I am Autism. When I come, I come to stay. I take the dreams and hopes of families and trample them with delight. I see the fear and confusion in the eyes of my victims and see the formation of wrinkles, the worries and pain on the face of their parents. I see the embarrassment their child causes because of me and the parent's unsuccessful attempt to hide their child, and me. I see tears the parents cry and feel and the tears of their child. I leave sorrow in my wake.

I am Autism. I take away and give nothing but bewilderment and loathing in return. I take speech and learning. I take socialization and understanding. I take away "common sense" and, if I am allowed to flourish, I take away all but their physical life. What I leave behind, is almost worse than death.

I am Autism. I fear nothing except courage. I fear those who take a stand against me and attempt to fight me and bring others into the fight as well. I fear those who try to make it safe and easier for my victims in the community, and their families. I fear those who push ahead. I fear the day I will be eradicated from the planet. Yet, I do not fear too much right now. There is no need.

Hello. Allow me to introduce myself. My name is Autism. Perhaps you know me or know of me, if not don't worry, you will meet me soon....

Autism Momma on Facebook

Is it Hyperlexia?

2012-07-01T18:17:00.003-07:00

Trey showing Megan his words

(Trey is 2 years and 9 months old)

The boy started taking his love for the alphabet magnets to a whole new level this week...spelling words! One night he spelled ROPE at first. He lined the letters up in a neat row on the fridge. I wasn't sure if he knew he had actually spelled a word. Then he spelled STOP... ok so this is real I thought. Trey knows words! I freak out, yell for Megan and David, grab my phone, and begin recording...

It was exciting to watch! He has moments nearly every day when he goes to the fridge to spell. I have noticed most of the words he has learned from watching Alpha Pig on the "Super Why" show that he loves. That pig has taught Trey so much! (Daddy and I really take no credit on this.. really. It's all about the pig)

Tonight he did a new word... (He got really silly at the end of this.. for some reason he kept trying to kiss my phone. It was so funny!)

We also did the alphabet. He absolutely loves when I write out the alphabet and he says them. Most letters he can say clearly.. some are more difficult like C, N, and W.

Saturday we went to Target to do some shopping. He was probably the only little one there not asking for a toy.. but HAD to have this alphabet picture! He held it reciting the letters throughout the store and all the way home. It was so cute! I think he would have taken it to bed with him if we would have let him.

Here he is enjoying some one-on-one time with his new "toy"...

So this all leads me to question.. how is he able to do this? How can he be 2 and 1/2 and go from learning his ABC's just a couple months ago to now spelling words?!? Yes, he is Autistic... he is severely delayed in many developmental areas such as speech and communication. Then why is he so advanced in this area?

I did some research... I believe it's the phenomenon called Hyperlexia. This is a syndrome characterized by an intense fascination with letters or numbers and an advanced reading ability. Hyperlexic children, more commonly Autistic ones, read at levels far beyond those of their age mates and often begin reading at very young ages, sometimes at age two.

Hyperlexia Symptoms

• A precocious ability to read words far above what would be expected at a child’s age
• Child may appear gifted in some areas and extremely deficient in others
• Significant difficulty in understanding verbal language
• Difficulty in socializing and interacting appropriately with people
• Abnormal and awkward social skills
• Specific or unusual fears
• Fixation with letters or numbers
• Echolalia (Repetition or echoing of a word or phrase just spoken by another person)
• Memorization of sentence structures without understanding the meaning
• An intense need to keep routines, difficulty with transitions, ritualistic behavior

Additional Symptoms:
• Normal development until 18-24 months, then regression
• Listens selectively / appears to be deaf
• Strong auditory and visual memory
• Self-stimulatory behavior (hand flapping, rocking, jumping up and down)
• Think in concrete and literal terms, difficulty with abstract concepts
• Auditory, olfactory and / or tactile sensitivity
• Difficulty answering "Wh–" questions, such as "what," "where," "who," and "why

I think Trey has nearly all of these symptoms. The question still debated is if Hyperlexia is just form of Autism.. like a Autistic Savant? Or if it is a stand-alone disorder. That answer isn't too important to me at this point. What is important is our awareness that Hyperlexia needs to be considered when we Trey is receiving his therapy services for the Autism.

Hmmm... maybe in a few months Trey can help proofread my blog for spelling and grammar errors. :)

The EEG Test Stress.. 10 Ways to Ease It

2012-06-24T14:47:00.000-07:00

(Trey is 2 years and 9 months old)

At some point during either the diagnosis process of Autism, or at some point in your Autistic child's life.. your neurologist will most likely want an EEG done. An electroencephalogram is a record of the tiny electrical impulses produced by the brain's activity. By measuring characteristic wave patterns, the EEG can help diagnose certain conditions of the brain such as seizures.

Trey had an EEG test at the hospital last Thursday. Prior to his appointment, I tried to read as much as I could about it in order to prepare us for what I knew would be a stressful experience. There are different types of this test the neurologist may want done..a short 1-2 hour or a full 24 hour test. Trey had the short test.. but with either one, the big chunk of stress happens when the electrodes are put on. No doubt it is NOT a fun time. Here are some tips I read and did.. and some I wish I had.

1. Try to schedule the E.E.G. for the morning. Your child will be asked to be sleep deprived, so if you can get an appointment for around the time he/she has been up for 4-5 hours is ideal. They had us keep Trey awake 2 hours past his bedtime the night before and get him up 2 hours early the next morning. We had the appointment time of 9 a.m. but it didn't actually start until around 10 a.m. So he was tired.. this was a good thing.

2. Do not feed your child a meal prior to the test. I gave him a sippy cup of milk when I got him up early.. that was it. I was happy with this decision. He didn't have a full tummy during his extreme meltdown when they were attaching the electrodes... and he was able to drink during the test itself and calm down.

Playing in the Waiting Room

3. Prepare yourself.. when you can't prepare your little one. I think the most heart-wrenching part of this procedure is knowing that there was no way to prepare Trey for what was happening and why. He didn't understand at all. One minute he was in the colorful children's waiting room with lots of fun toys and a giant fish tank.. he was running around giggling and playing like he had just entered Disneyland! Then the next minute we go behind the big doors to a stark white sterile little room with bright lights and beeping machines everywhere.. and the "mean" people with gloves started messing with him.   This was so hard for me!! I did my best to hold back the tears.. I wish I could have prepared myself for this. :(

4. Bring some of your child's very favorite things! Super-duper important! Like I said, we were put in a white sterile little room.. with what look like a dental chair in the middle where my husband sat holding our little guy and was told not to let him down. So distractions to keep him calm and occupied were a must! Here is what we brought for Trey:
   *3 of his very favorite Thomas Trains.. one in which he held with a tight fist the entire time.
   *"ABC" app on my phone that he loves and a Thomas app he had never seen before.
   *portable DVD player with his favorite Thomas movie.. the ultimate lifesaver!!!
   *sippy cup with milk.. (we brought him his favorite Fruit Loop cereal too but he did NOT want to eat)
     *favorite blanket. Cheetos the bear would have come too but, sadly, he is still missing.

5. The electrodes are not as bad as they look! This was something that gave me a lot of anxiety prior to the test. I really did not think Trey would be able to handle having them put on his head. This is the same little guy who has a complete meltdown when we try and give him a haircut. We literally have to wrap him in a sheet.. daddy holds him as best he can while I do the buzzing. It's so emotionally draining for all 3 of us that I usually use the smallest setting on the clippers just so we don't have to do it very often.

So how were they going to attach about 20 different electrodes onto his head and keep them there for the entire 2 hours?! I didn't think it could be done.. but it was. Now, don't get me wrong.. this was the horrible, rotten, awful part of the whole thing. It took Daddy holding him firmly in the "getting a haircut" position while sitting in the chair, a nurse holding his head still (sorta), Mommy kneeling next to him singing the ABC song and rubbing his favorite silky part of his blanket on his cheek, and the other nurse quickly doing the 1-2-3-4 steps of electrode attachment.

Trey getting the electrodes attached...

1. mark the spots
2. dab with glue
3. attach electrode
4. wrap the head in guaze.. DONE!

The whole procedure took probably 10 minutes.. I was impressed. Trey did scream and cry and turn red and almost threw up (which is why I was thankful for not feeding him breakfast!).. but it only took him a few minutes to calm down. The lights were turned off, Thomas DVD was turned on, sippy cup in mouth.. and blanket in his hand. He was going to be ok now. :)

6. Don't sit in view of the EEG machine while testing is in progress. Why? Because if you are anything like me, you will stare at it and worry every time you see a little dip or change in the pattern. I kept wondering what was it? a seizure? a normal brain wave change? Some were little changes... some were big black dark squiggly changes.. and the technician dude just sat there staring at the screen. Never changed his facial expression. Even when he periodically leaned towards the keyboard and typed something on the screen.. he never said or did anything. I wanted so badly to ask if he saw anything concerning... but I knew better. I wish I hadn't sat there.. I should have been watching Thomas instead.

EEG Brain Waves

7. Don't schedule the E.E.G. on a Thursday or Friday. Why? Because the technician dude won't tell you anything.. and you have to wait a couple days to hear back from the neurologist for results. Trey had the test done Thursday... today is Sunday. The waiting is a big fat bummer! I am hoping we know something tomorrow.

8. Don't over-GOOGLE it. While as I hope you found this blog by googling and found it helpful. There are a few I read that were helpful as well. Just try not to over do it. I usually do and end up freaking myself out finding the one unreliable sight who reported a fatality or permanent brain damage from getting an E.E.G. There is a lot of crap on the internet!

9. Realize the importance of knowing. Going through with the test and waiting for the results has made me realize the importance of knowing whether or not Trey is having seizures. Of course I pray he isn't.. but I realize he possibly could be having them. If he isn't, great and at least we know. If he his.. then we can now move forward to the next step of getting him the right medication to control them. This is a serious test with serious results either way when helping your Autistic child's development.

Trey calmed down

10. Enjoy the little moments...they help! That evening after a stressful morning then a good long nap at home, Trey was happy and silly like nothing had ever happened. Daddy and I were still a little numb and traumatized by the whole experience.. but when Trey would take little breaks from playing with his toys to look at us with those big brown eyes and say "hi" in his sweet voice and maybe give us a snuggle hug if we got lucky... we knew we did the right thing by going through with the E.E.G.... and Trey had forgiven us.

BIG Reward for Missing Bear!!!

2012-06-17T21:17:00.002-07:00

Trey (2 yrs 9 months) and Cheetos

ATTENTION READERS: This is a multi-state alert for the recent disappearance of a beloved missing bear. This bear, that goes by the name of "Cheetos", belongs to our Spanky. He misses his stuffed little buddy very much!!

We Miss You Cheetos!

Cheetos was last seen somewhere between Eau Claire, Wisconsin and Minneapolis, Minnesota.. and could possibly be found in either of those states as well as Iowa or Missouri (or is very well hidden in our mini-van?). The exact date or time the bear went missing is unsure...however, we report the approximate dates would be between June 9th through the 13th.

Cheetos is light brown with very soft fur, approximately 12 inches height, and has loving black beady eyes. He was given to our little man by his Auntie Marcee so does have sentimental value which makes him priceless. He was named after Marcee and her extreme love (borderline obsession.. just sayin) with Flaming Hot Cheetos.

Trey and Auntie Marcee

A reward for information of the whereabouts of this special little bear, please contact me as soon as possible! Thank you for caring and sharing.

Oh wait.. what's the reward you ask?!? A VERY HAPPY LITTLE BOY!!!!

Marcee likey!