Turning Three! (Flashback to September 2012)

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!

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:

1. 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.
2. 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.
3. 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.
4. 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.
5.  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.
6. 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.
7. 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.

(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!

(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"..

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

(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:

1. HEALTH/MOTOR:  Sensory concerns, foods limited, sensitive to loud noises, tactile concerns, movement concerns, fine motor and visual motor concerns.
2. SPEECH/LANGUAGE:  Diagnosed with receptive/expressive language disorder, limited phonetic inventory, simple routine and one-step direction limited, very limited expressive language.
3. INTELLECTUAL/COGNITIVE:  Does not ID colors, does not point to pictures or body parts upon request.
4. ADAPTIVE BEHAVIORS:  Uses no utensils, does not use cup with straw, does not undress, does not wash hands.
5. SOCIAL/EMOTIONAL/BEHAVIORAL:  Limited pretend play, does not play with other children, does not share, transitions are difficult. not easily directed by parents.
6. 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

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...