The End of Another Year... Bye Bye 2013!

December Happenings...

 

 

THE STRAW:

Luke learned how to drink from a straw! Yay!

 



The look of concentration and focus...

 

He is also beginning to drink out of regular cups with small regular straws. He is also beginning to try to drink out of a regular cup like a big boy! His teacher (and her staff) worked so hard with him to achieve this. I am so thankful!

 

 

Christmas 2013

 

 

As you can see, Luke was fairly uninterested in Christmas. His siblings did help him become more involved...

 

 

 

Luke's gift... The SnugglePod

 

 

A cocoon shaped swing type chair. It hangs from the ceiling in his room. It is not really a swing, but it rocks back and forth. He loves it!

 

 

2013 in Review

 

 

This year just flew by! So many great things happened. Our family has grown closer and we are continuing to blend. Luke is a great part of our family. He fits in. While his disability causes him to be dependent on his parents, he is able to be flexible and flow with the needs of his older siblings.

 

Luke is walking stronger. He now can hold on to someone's shirt and walk. He pulls up to counters and goes around the kitchen on his two feet while holding onto the counters. He grabs things off of the tables and counters (this is actually a good thing!). He stands at the table and will vocalize while looking at me (or Marty) in order to let us know that he is hungry. He has started vocalizing in ways that sound like he is saying approximations of words. He vocally imitates sounds that Marty makes. He will sometimes try to kiss and hug me. He laughs at some things that are age and gender appropriate (i.e., burps, passing gas aloud, etc.). He has grown taller and gained some weight. He is in kindergarten and seems to be among the higher functioning students in his class. He is drinking from a straw and trying to drink from a regular cup (without a lid). He has stopped trying to climb out of his carseat. He has learned how to push the button to roll the car window down.  He opens up the drawer under the stove to access cookie sheets to bang on the floor. He LOVES music and will move his head to the beat of the music. I am sure there is much more, but I am tired and cannot remember.

 

So, while there are some challenges with Luke, we are all focusing on all the growth he has made this year. He truly is a living testimony to the greatness of God. I cannot wait to see what 2014 brings!!!









Precious

 

Moments of Pure Bliss

 

There are so many worries that try to crowd our minds when it comes to our little guy. Our faith is strong, yet we can't help but wonder what the future holds. Just when we think there is no real hope, moments of pure bliss occur where we feel a dramatic connection with Luke. This picture is a great illustration of what these moments are like. There is joy and laughter. Luke snaps out of his little world and engages the people around him. We live for these times. They are happening more often and that keeps our hope alive.

Is it "Stim-worthy"?

 

After knowing many children with sensory-related disabilities, such as autism spectrum disorders, I came up with the phrase "Stim-worthy". This is an explanation of my choice of words;

 

 According to Wikipedia, "Stimming is a repetitive body movement, such as hand flapping. The term is shorthand for self-stimulation. Repetitive movement, or stereotypy, is often referred to as stimming under the hypothesis that it has a function related to sensory input.

 

In many situations, an item is chosen that provides needed sensory input to an individual with sensory differences. I came up with the phrase, "Stim-worthy" after taking note of which items my son "stims" on. My son licks as a form of self-stimulation. Below are pictures of Luke with items that he finds "Stim-worthy";

 

 

 Luke will climb to great heights in order to gain access to baskets. He studies them and licks them repeatedly.

 Luke's love of the cd player is two fold- He enjoys the vibration of the music when it is playing. He also likes to lick the speakers.

 This is another basket that Luke enjoys. He fell asleep with this one on his head.

 Luke's most favored items are shoes. He will go to great lengths to find shoes to scratch and lick.

 Music is stimulating in itself. Luke will often pick one or two notes to play over and over again.

Luke enjoyed the metal box top he has in his hand. He took it everywhere until he left it on the bus. He then moved on to other "stim-worthy" objects. They are listed below;

 

-light up toys that spin

-toys that produce music

-metal objects

-my curly hair

-solo cups

-paper plates

-cardboard

-plastic bags or crinkly plastic

-mini-crates

-plastic container lids

-CD's and their cases

-computer keyboard

-The Pirate Song by the Backyardigans

-spinning in an office chair

-plastic tires on toys

-sippie cup

 

 

There are many other items that I am sure I am missing. Each child with  sensory-related disabilities has a very specific list of "stim-worthy" items. As a therapist, it is my job to know these items. They provide motivation for behaviors the therapist is wanting to teach.

 

 

So, tell me your opinion-

What do you think of my choice phrase?

Do you understand?

I welcome comments and criticism.



Musings, Frustrations, and Joys...

Luke standing at the kitchen counter wondering where in the world his dinner is...

 

Musings-

I sometimes find my life to be a series of comical events that run together into random stories of adulthood. I have had years that I have titled, "The year of unfortunate events" or "The year of growth". Last year was a year of many unfortunate events that led into this amazing time of encouragement, growth, and peace. Professionally, I am now in a place where I feel like I am a perfect fit. I feel like I am finally in an environment where who I am is a perfect fit. I plan to grow where I have been planted. I give God the credit for this one, definitely. I come in contact with individuals who help me see that I am intelligent. It sounds weird, I know, but I have questioned my own intelligence, at times.

 

My marriage has grown and changed. Instead of two selfish people trying to do things on our own, we are allowing God to take control and letting go of our selfishness. We are falling in love again. As a result, we are becoming the parents God has called us to be. Our children are being blessed by what God is doing in our lives.

 

I have been concentrating on these great blessings. I choose to look at all the positives. What a great time in life!!! One thing that I have been avoiding is that issue of a diagnosis for Luke. I am loving all the positives that are happening and I am stupidly ignoring the elephant in the room.

 

Frustrations-

In the back of my mind, the diagnosis issue has been looming like a dark cloud. See, he has to have a diagnosis in order to get on the waiting list for APD (Association of persons with disabilities). The waiting list in years long. APD offers specific services to individuals who have aged out of school system benefits at age 22. Luke will need these services.

 

I am just desperately avoiding the fight. No one seems comfortable giving Luke a clear diagnosis because no one really knows what is going on with him. There are no clear answers. He does not fit the common mold. This uphill battle requires emotional and mental energy that I am just not sure that I have.

 

Sometimes I just want to scream! I know I am not alone in my fight, but I definitely feel alienated by my situation.

 

Joys-

I want to go back to thinking about the joy in my life. My husband and I are in love with each other. We have joined forces for the benefit of our children. We work as a team now. My children are involved in many great extracurricular activities; dance, golf, chorus, youth, etc. Luke has a great teacher and she is really helping him grow. Our little family has turned into a force of sorts. We are becoming fiercely loyal to each other.

 

So, I guess I am rambling. There is no real point. I just feel the need to get it all out. I am basically preparing myself for the next step. It is time to push for a diagnosis so that Luke can get the services he needs and deserves to have. It is time to push until there is a solution.

 

For now, I am going to get my little guy to bed. He is in my bed laughing and stimming himself silly. I also plan to write another blog on the subject of all items found to be "Stim Worthy".

 

 



The Time of Change is Upon Us... (written several weeks ago)

Luke is turning 6!

                                                     Taken in Blue Ridge, GA

                                          Luke tubing in Blue Ridge, GA

                                        Hot tubbing with Mommy in Blue Ridge, GA

                                      Double riding with Mommy- my first time!

                                              Luke is part of the crew on the road

                                         Enjoying the train ride in Bryson City, NC

                                                         Train ride Bliss!

I just cannot believe my little baby boy is turning 6 in a week. He turns 6 in the middle of his first week of kindergarten. Time seems to be flying. I try to value every moment we have together. There are times when he seems to prefer being with me. He will smile and laugh with me. It seems like it just doesn't happened as much as I would like.

I have prayed that God would put our family on His road and point us in the right direction. I believe He is answering this prayer. We are finally coming together to help Logan get healthy. God is using us in church. Our priorities are beginning to line up with the Word of God. I just wish this could have happened sooner.

I am so proud of my little-big family. We are all growing and changing. We have come so far and we still have a ways to go.

Reality is a bitter pill to take...

Reality as it is right now-

This is a series of pictures that was taken a few days ago...

 He is putting up with his Mommy's picture taking

 Hugging Mommy and wanting to be picked up

 No more pictures Mom!

Seriously Mom!

 Mad Lukie

Ouch!

A smile to hide behind.

Reality Bites- literally.

These pictures perfectly show what my relationship with Luke is like. Sometimes, he just puts up with me. At other times, Luke desires a certain level of physical affection. Most the time, I think he just wishes I would leave him alone. 

Luke has personality. He lets me know what he likes and what he doesn't like. I honestly think that there is something more to Luke than what meets the eye. He does not value social interaction. He does not have a high level of needs, therefor, there are not many things that he finds motivating. He has no functional expressive language. These three things combined with the fact that he has a physical disability makes Luke seem extremely low functioning. I just don't think he is as low functioning as other people view him. Evaluate him with any assessment piece and he will be found low functioning. Watch him for several hours within a span of a couple of days and you will see something different. There is not one assessment/evaluation tool that can be used to really show what Luke's level of functioning is.

So, in school, he is in the "profound" group. He will be going to kindergarten next year. He has been reevaluated and is to go into a class with some of the lowest functioning students in the county. He is currently receiving ESY (extended school year) services. This is critical to Luke in that it will bridge the gap between preK and kindergarten. We do not want Luke to regress. 

The first day of ESY, I drove Luke to the school and dropped him off. This is the day that reality really hit me right in the face. Maybe I have been in denial or maybe I am just crazy. I do not view my son as being in the same group as he has been placed in. I think he is a step up from the lowest functioning students. I can't prove it, though. How heartbreaking it is to have to admit to myself what reality is with Luke! 

I think that is why I stay removed. I do not get involved with his school or in his classroom. I do not allow anyone to get too close to me. I can't emotionally take the reality I am living with Luke. He will be turning 6 in August and he cannot talk, walk, feed himself, use the potty, chew appropriately, sit appropriately... the list goes on. I ask myself how will I be able to handle this as he gets bigger. If it weren't for Marty, Luke would not have most of his financial support to meet his needs. All other responsibilities fall on my shoulders. What is it like to truly enjoy a meal without having to feed someone else at the same time? What is it like to not have grubby hands touching my left arm and pulling it during meal times? It is only on rare occasions that someone else feeds him or changes his diaper or fixes his sippie cups. I am Mom. This is what I am supposed to do. I just find it overwhelming because I don't see a light at the end of the tunnel. I see myself having to provide the same kind of support for the rest of my life on earth. It is disheartening. 

You ask, where is your faith? Oh, I still have faith, but I also have to be reality based. This is why reality bites. I am torn between having faith that God can do a miracle and knowing that my reality will not likely change until I reach heaven's gates. 

Tropicana Speech Contest 2013- Sydney's Speech

Pictured below is a very nervous Sydney before her speech on May 8th, 2013...

She then posed happily with Mimi and PapPaw...

Sydney is a 10 year old 4^th grade honor student.  She entered the Tropicana Speech Contest at her school and won 2^nd place.  Sydney is passionate about advocacy for people with disabilities, especially those with autism.  She resides with her parents, Marty and Jaime Daniel, siblings Logan, Gracie and Luke and pets, Jersey and Toby.  The transcript to her speech is below.

My name is Sydney White and my speech is about how to be a friend to a person with autism.   This is important to me because my little brother, Luke, has autism.  I also have several friends at school that have autism.

Did you know that one out of every 54 boys and one out of every 252 girls are diagnosed with autism?  People that have autism usually don’t have many friends.  Many people just stare at them because they are different than us.  You could be the type of person who stares. You could be the type of person who stays away from people who are different because you feel afraid of them or don’t know what to say. Even though we are all different, we are all the same because we all need friends.

I’m going to tell you how to be a friend to people that have autism.  There are five steps in the process.

The first step is, “Care, don’t stare.” Don’t stare at people who are different from you.  This could hurt their feelings.  Care about them instead of staring at them.

The second step is try to talk to them.  Say, “Hi,” to start a conversation. If they are having lunch you might say, “What are you drinking?”  This will help with communication skills.

The third step is, stand up for them. If someone is making fun of them, stand up for him/her. You could say, “Hey, stop messing with him/her. How would you like to get laughed at? It hurts your feelings doesn’t it?”  It hurts them just like it would hurt you.

The fourth step is walk with them and get to know them.  At school if you have a student in your class who has autism, you could volunteer to walk with them to the cafeteria or to P.E. class.  They may like it if you play soccer with them.

The fifth step is to volunteer to help them with their classwork.  You could go to their teacher and ask if you could help with their classwork.  When you help them, they might earn an A+!

In conclusion, when you become friends, maybe they will give you a great big hug. Maybe they will smell your hair or maybe they will smile.  Having a good friend will make their life better. Your life will be better, too, because you have a new good friend.  Make sure you follow these steps. You may find what I did…they are just like us and they need friends, too.

Sydney, you inspire me. Love, Mommy :)  

Professionals Wear Masks Too!

Ok, I must begin this blog by saying that this is not about a specific person. This is about a group of people who call themselves professionals, yet are something so different behind closed doors. The words that come out of their mouths are so toxic. Do these educator professionals not realize that, if it weren't for the people they speak so poorly about, they would not have jobs?

There have been so many situations where I have heard professionals verbally bash parents. They take the stance that the parent "must not work with their child at home" or that "this child is just B-A-D". It also seems to me that, when a parent is having scheduling conflicts with a meeting with the teacher or IEP team, the parent "does not have their priorities in order".

When I chose to become an educator I truly thought that all other educators shared my passion, love, and compassion for students and their families. Don't get me wrong, there are some amazing people in education that have the biggest hearts and give so much to their students. I guess my opinions have changed since becoming a mother of a child with special needs. My child has been judged. The worst has been assumed. My family has been torn to shreds. Every thing we do seems to draw attention. I am not alone in this struggle. I have heard so many people pour out their souls to me as they grieve over the struggles they have been through and are going through now.

The emotions are so real to me. I am walking through the struggles and the joys. My heart hurts for those who are going through the same. It almost consumes me. How judgmental I have been in the past and how absolutely wrong I was. You cannot just assume the worst. I look at others as Jesus does. My child puts forth so much effort just to achieve a milestone that others just take for granted. He is not lazy. He is not spoiled. He is strong- stronger than those who are judging him.  He is human and he has a special calling. God is using him- God is changing me through him.

I must fight this and educate the educators. Oh God, open doors and help me be more like you. Let me see the best in others and not judge. Let me be your light.

 My sleepy Lukie- My Heart!

There are times of change- it is inevitable.

The Daniel Family minus 1 

Easter 2013

The Sibling Picture

Thanksgiving 2012

There are many things happening in my little family. First Logan, the oldest boy, will be going to middle school next year. I know what changes occur during middle. Honestly, it is scary for me. Will he make the right choices? Will he not settle for less than he is capable of? Where will he find his sense of worth? Hopefully from God, but temptations will definitely present themselves.

Second, I have made the decision to walk away from my teaching career and seek other opportunities. I need to go ahead and walk down the path God has for me before He closes it and offers it to someone else. So, I will be facing great change. I know that I will cry during the last week of school. I know I am going to miss my precious students. I have changed their lives and given their parents hope, but they have done so much more for me. They have changed me. Knowing the kids that I taught has changed my life. 

Our last major change is coming with a choice; Should Luke stay in PreK one year longer or progress to kindergarten? This is a change that comes with much concern for me as his mother. If we have him progress, he will stay in one school, in one setting, until he is 12. So that is basically 7 years in possibly the same room with possibly the same teacher. So, what is the best decision for Luke educationally? Then there is that never ending question of what is his disability? Naming the disability will change little. It will only allow us to get on waiting lists for services for Luke. I just wish I could wrap my mind around WHY Luke acts the way he does. Is he in pain? Is something wrong? Is it just a behavior that I shouldn't be concerned about? What if he is having mini-seizures and we are just not catching? The questions are never ending. No doctor or specialist we have ever been has been able to answer any of these questions.

I guess you might think these just the ramblings of a person who is trying to figure it all out. In some ways, that is completely true. I desperately want to make sense of it all. This is where I need to stop. God's got this and I don't need to worry with all of these small details. He knows what He is doing. It is my faith that is being tested. I don't know what the solutions will be. I do not know how things will turn out. I just have to believe that God is finely tuning the orchestra of my life.

**LOVE**

Update January 2013

Look at what Lukie can do...

Yes, Luke has taught himself how to roll the windows up and down in the car. He got such a kick out of it. I guess he felt empowered.

Sydney downloaded an app on her new Kindle that is called "Smule". The game plays music of all kinds. Luke like Mozart and Beethoven. He is watching her and listening to her playing smule;

The cutest bottom lip ever!

He is pure joy!