Not so intensive feeding clinic...

            As I mentioned in a previous post, Cyler had an evaluation to see if he was a candidate for an out patient feeding clinic.  The "team" agreed that he would benefit from their services.  They informed us that he would have to be there  5 days a week for 4 weeks and it should be really soon.  (no waiting list).  Now a month later and after I have worked my but off to arrange transportation to and from this "feeding therapy", they tell me that Cyler won't be scheduled until March of 2013.  I have been calling them for the past two weeks just to get a copy of the evaluation.
           Finally, today I get a call that the evaluation is ready.  It's been a whole month!   I asked the lady to email it to me because I was tired of waiting.  I was completely shocked with what I read.  They said that Cyler was cooperative and appropriate, then a few lines down said he was developmentally 22 months old.  Unfortunately, this is because they use "standardized" testing and since he isn't eating "normally" they deduct a ton of points.  Also, there is a small speech delay.  Cyler had a trach most of his life and wasn't able to talk, so that is expected.  Where is the standardized test for that?  
            I still can't help feeling a little upset.  This is my baby.  The boy that they told me probably wouldn't live. Here he is walking, talking, and amazing me every single day.

1.    I see that my son can name off every single car they sell on the market and all they see is a marker for autism.

2.    I see my son taking random objects and positioning them "just so" and then telling me what it represents (creativity and imagination) all they see is a pile of things that he is focusing too much on and if his eyes wander, even for a second, then he must be ADD.

       I did speak to his speech therapist about this evaluation.  She informed me that intellectually  Cyler is at, if not above where he should be.  I felt a little better.   Some reassurance that we are doing the right things here.  I am not in denial.  I know that there are plenty of developmental issues.   However, I take into consideration all that he has accomplished and all that he has been through.  It is important to consider all that he CAN do.  He has plenty of time to prepare for college...I think I'll just let him be a kid for a while.

The Web!

          My friend Anne Marie posted a link for this spider web activity on my facebook wall.   The idea is from a site called notimeforflashcards.com.  Check it out--lots of fun things to do!  Cyler helped me set up the web.  We used masking tape and it was quite simple.  Then the fun began!



 He loved jumping off of his turtle into the web.  He also observed that the turtle's shell resembled the web design.

He hopped around .

Walked...carefully!

Used it for his car.

Finally, he decided that he would be a spider and crawled.

          I love this idea. I love how open ended it is.  Cyler has come up with so many uses.  I think I will keep it on the floor for a few days and see what else he comes up with.  

Awkward...

           I love my son.  On Thursday my mom came to pick up Cyler and I in her new car.  It was really nice.  We ran a few errands then went to lunch at a Mexican restaurant. I had a ton of food left over to bring home for my hubby since he couldn't be with us.  As I was climbing into the car the box fell and all this lovely red colored food was all over my moms light gray interior.  We managed to get it all cleaned up but my darling little child kept tattling on me.  Telling my mom that I made a mess in her new car and that it was all over the place.  He said this over and over again just using different words for emphasis.  So my mom asked Cyler if he thinks that I should go in "time out".  Cyler's response:  But I love her.  He is so awesome!

            This morning Cyler and daddy went to Lowe's to build a "ghoul bus".   It's really great, they give you all of the supplies and it's completely free.  Cyler is so proud of himself and is enjoying telling everyone that he made it all by his self.  It is pretty cute and he is looking forward to going again in two weeks to do their next project.

              Also, today we had an important meeting with a home health nurse regarding my son and the care that he receives.  She was very nice and just asked a few questions while looking through the chart and such.  Well our lovely four year old decided to climb into the dogs cage, growl, and chew on the bars.  (our tiny poodle does this when she wants out).   We were absolutely mortified and I could feel myself turning beat red.  We are absolutely all for imaginative play.  However, the timing could have been a little better.  My husband managed to pull my at this point,  screaming in protest, son out of the cage.  They went to Cyler's room to play so that I could finish up with the nurse.  The nurse and I came to the conclusion that maybe she wasn't paying enough attention to him, so I invited him out to talk to her.  Did not work so they went out of the house for a while so we could wrap up the meeting.

            We are really anxious now because we have an adoption home study coming up.  A social worker is going to come to our home to make sure that it is suitable for a child.   We can clean and prepare our home as much as we want, but we can't predict what our imaginative and curious child will decide to do at the last minute.  I don't think that all the Xanax in the world could help me now.

I CAN...

               Cyler is growing so fast.  He is learning and gaining confidence everyday.  PAHM  is a great blog  run by 3 moms that empower their children to be independent and explore their world.  They believe that their children are capable and they trust them.  Since following their posts I have come to the conclusion that even though some things are not a good idea for safety reasons (omphalocele) there are so many things that Cyler CAN do.

Cyler  CAN...

                                                                       climb

slide

kick a soccer ball

dance

play

count to 20

spell Cyler

build really high towers

love

name many shapes and colors

jump high

drink from a cup (new)

read

draw awesome "air dancers"

jam to the oldies (the real oldies)

share

run and skip

brighten every ones day with a smile

and so much more!

Building Strength!

         We had a consult in Orlando at APH to see if Cyler was a candidate for their "intensive feeding clinic".  He had to perform a number of tasks in front of a group of specialists including a doctor, therapist, nutritionist, and social worker.  He did really well with the actual tasks.  I wasn't sure how it would go especially after he decided to tell the social worker that his name was "poop" when she asked him.  After the evaluation we were informed that they feel Cyler would benefit from the program.  YAY!   Now we just need to arrange transportation to and from Orlando 5 days a week for 4 weeks!  YIKES!
   
       Also, at the appointment a new diagnosis was thrown into the mix.  We were told that Cyler has low muscle tone, also known as Hypotonia. I was completely taken off guard with that one.  I never considered this even though all of the signs were right there in front of me.  Not being able to balance on one leg, being wobbly, and lack of shoulder definition.  I brought this up at our pediatricians office and we now have a physical therapy consult and a neurology consult.  He should have never been discharged from PT.  When he met his goals new ones should have been created.   The neuro concert is to address some of the self stimulating behaviors that Cyler has (dancing, vocal, and focusing).  So now we are taking our "learning" to a new level.  Focusing on gross and fine motor skills.

       We made Cyler a "busy board"  to work on his fine motor skills.  Some people have asked why I am teaching him to unlock things.  My son is 4 years old and already knows how to do these things.  If we have something under lock and key for his safety the key is not within his reach!  It's that simple!  Part of the board is a "geoboard".  It's just nuts and bolts placed so that he can use rubber bands to make various shapes.

     We also found a park far enough away from the road where Cyler can run.  He LOVED it!

 

     It was so awesome to see him run like this.  He is always active but tends to forget about safety. I think that it's a boy thing.   If we let go of his hand for any reason, he takes off running.   This park is PERFECT.  There is enough area to run and it's semi closed in by a fence.  Cyler has told us that next time we go that he would like to play soccer.  Sounds like a plan!

Straws!

There are so many things that can be done with a handful of straws and a few empty containers.  Cyler enjoyed making letters, shapes, and people.  I was able to sneak in some math as well.  I asked him to count how many were there, then took one or two away, and asked him to count again.  We did this several times and he did amazing.  We also worked on one to one recognition by having him place a certain amount of straws in each container.  This is to ensure that he understands that each number represents one object instead of just counting by rote.  This kept us busy for about thirty minutes.

We added letters to the mix.  Today he was able to spell GMC, Cyler, stop, and of course Ford!

Yesterday was talk like a pirate day (for real).  We didn't know until later in the day but we were still able to talk about it some and incorporate some activities.  Cyler played with his palm tree and pirate ship for a while on his private island.  We watched the Rubbadubbers--pirate episode and went on a small treasure hunt.  

Painting and such.

Glue and sand art.  Cyler really enjoyed this.  He really liked pouring the glue on the paper.  He than started sprinkling some sand on the glue. Finally he decided to mix all of the colors together and see what would happen. The end result was a really pretty peach color.   

Below is Cyler painting with classical music in the background.  I can't believe the concentration.  It's amazing.  He was completely focused.  That is until the static interfered and totally wrecked his groove.  Nevertheless he did manage to create a few nice pieces.  

Even daddy got into the fun and decided to introduce transfer painting.  He folded a piece of paper in half and asked Cyler to paint only one side.  Cyler loved this.  It was so much fun to watch his mind process how this was working.  Daddy looks like he was having fun too!