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!

Frustrations and Joys

FRUSTRATIONS- Ramblings of a Special Needs Mother

When Luke is home with us all is well in our world. He fits into our family and just goes with the flow. It is only when others decide it is their job to judge our family that I begin to have issues. I feel like our family is under a microscope. As a result of Luke being Luke, I feel that there are always eyes on us. I hear whispers and see facial expressions and body language. I am not thick in the head. I know very well what is said. Joe Public doesn't realize that I also experience the other end of the coin. I have heard the conversations of others as they pick apart another person.

Gossip always comes back to me. I somehow always hear what others have said about me or Luke or about our family. There have been some pretty hurtful things said by others that I know. By God's grace I have been able to take it in stride and forgive. The hardest part is the forgetting. It just doesn't come easy. I do not hold grudges. I just do not want to allow these people close to me. In fact, I find myself not wanting anyone close to me. I can't be hurt that way.

It is easy for someone to say that "You just can't let what others say get to you". Until you've lived it, you just can't really imagine. It is not easy for me to see Luke now and not think about the future. There is always guilt. There is always the feeling that his behavior is cute now, but it won't be cute when he is 15. Yes, I have faith in God and I know that He's got this. I am also human. Here's a newsflash- I am NOT perfect. Neither is my family. We are good people and we are doing our absolute best.

My husband has two jobs. I have a full-time day job, a house, and four children to take care of. He and I have decided that there are "target behaviors" we want to work on with each child. Each one of our four children struggle with certain things, so we try to take the time we have and focus on teaching the "correct behaviors". We do the same with Luke. We focus on appropriate behavior in family/social situations and in the community (i.e., grocery store, Wednesday night supper at church, Sunday church, restaurants, etc.). We expect appropriate table behavior at home. We work on encouraging Luke to "finger walk" around the house. We brush teeth and hair, wash hands, wipe his face, and encourage freedom where it is appropriate. Honestly, what more could we possibly do?

So, now on to...

JOYS- A Mother's Thankful Heart

I am glad that God chose us to be Luke's family. He has taught us all so much through Luke. As a child and young woman, I lacked patience, perseverance, and true faith. Being a mother to Luke has taught me all three.

This is a fairly blurry picture that Logan took tonight, but it a great picture. Luke fed himself tonight, with my physical assistance, without resisting. It was pretty awesome. He is very interested in being more independent during mealtime. I have gotten so used to feeding him because I feed myself at the same time. I am usually starving my dinner time and just don't have the patience to work with Luke this way, but we have been slowly working on it.

I just adore this little boy and I see beauty in him- I see Jesus in him. That is why I have a hard time with the harsh words others use.