Monday, April 15, 2013

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!

Wednesday, December 12, 2012

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.

Sunday, October 28, 2012

Unlocking Luke

A common theme among parents of children with communicative disorders is that there is more going on inside their child then what others think. I believe that about Luke. I watch him as he crawls around our house and I notice that he motor plans. Yes, the things he wants are not what other children want, but he can figure out what he wants and how to get it.

I think there is a certain brilliance in Luke. It may not be conventional brilliance, but there is a gift in him. I wish we could unlock the gift. What would help him communicate? I watched a show about a grown man with autism. He is non-verbal, but when given a certain software on his laptop, he was able to type out what he wanted to tell people. It was pretty phenomenal. I hope there is something like that out there for Luke. I would love to know what is going on in the beautiful little head of his.

Monday, October 1, 2012

An Update

An Update:

Luke is having a great year at his school. He has only missed a few days. His teacher has him walk with his gait trainer every day. He is walking stronger. In fact, when our church had their preschool parade, Luke led the crowd with his church teacher. He finger walked (held the fingers of his church teacher and walked). He pulls up all over the place. I think he is figuring out that there are some pretty cool things on counters.

We have not pursued further testing to find out what is going on with Luke. We don't really have the time or the money. Also, having a name for his disability does not change anything. I feel that worrying about the future is a waste of time. We will take each day as they come.

Luke is happy. He only gets grouchy when I won't allow him access to my bedroom and bathroom. We live a busy lifestyle and he just goes along with whatever we are doing. I guess that is why the focus is kind of removed from him. Sydney takes Ballet I on Mondays and Jazz I on Thursdays. Logan has RA's on Wednesday nights. Gracie has gymnastics on Thursdays. Luke and I have our time for 20 minutes each night after Marty leaves for his second job. I am trying to give each of the kids some undivided attention. We have never been a family that revolves around Luke's disability. Of course, Luke's disability is not life-threatening and we all have come to a point of acceptance.

Sydney has turned out to be a girl after my own heart. She has a love for children with autism. She helps Luke and protects him. She also helps boys in her grade. She sits next to them during lunch and guides them. Gracie and Logan love Luke, but Sydney is different. I am so thankful that she has a sweet heart.

Our family is just so precious. We have our weaknesses, but all together, we are awesome.

Monday, September 10, 2012

My Lovebug

Is this not a beautiful picture of my little Luke?! He is such a beautiful angel. I find myself worrying less about what is not right about him. Look at all that is right with him! He is beautiful, sweet, strong, loving, funny, silly, and a wonderful human being. His laugh is contagious.

My nickname for Luke is "Mommy's Lovebug". It just fits. I certainly love my son so much. I am thankful that God chose me to be his mommy :)

Tuesday, July 17, 2012

My Happy Boy



This is my son. He has a great personality. He is this amazingly strong individual. Most people look at him and make judgments based on his disability. Yes, he has a physical disability. Yes, he has a huge communication delay. Yes, he has pretty major global delays. I can admit these things, but I refuse to put limits on him.

At school, he is grouped with peers that have "profound" disabilities. I honestly do not think that he is appropriately grouped. His physical disability and global delays cause him to be grouped with this population of students. There is something more to him, though. I know I am his mother and I am automatically biased, but there is more going on inside his little head than any of us really know. You can see it in his eyes. I truly believe that he is a boy who is trapped inside his body.

It takes time to look past what is on the outside.