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.

Sunday, July 8, 2012

The Story of Luke's New Stroller

Several weeks back I posted that I would be selling some things on Facebook in order to save money to buy a stroller for Luke that would be able to meet Luke's needs. This is the stroller I felt best met Luke's needs at this time-

This is an EIO Special Tomato push chair. The back is higher and it has a wonderful foot rest. It has big wheels and all kinds of nice features that will allow Luke to be comfortable without having to get a wheelchair. I knew it would take some time, but I wanted Luke to have the best.

I set it in my mind that I would start selling things (of mine and the three kids) in order to save money to make this $500 purchase. I updated my status on Facebook asking my FB friends if they were interested in buying some specific items. From that status update, I began receiving feedback from a couple of people wanting to help. This truly blew me away. I did not expect people to want to give us anything.

Honestly, I had been going through a funky phase of truly questioning my faith. I was going through some sort of emotional and spiritual fight in myself. I never realized that people, outside of my family, really cared anything about what we were going through. So, a few people came out and stated that they wanted to help financially. A gift certificate was purchased and a couple checks were sent. Then, my Mother called and said that we had a package at their house. It was the stroller. The exact stroller I wanted for Luke had been paid for and shipped to my parents' house. The person wished to stay anonymous, so my mother gave no opinion as to who it could have been from.

There were just no words at that moment. God really did care! He was taking care of Luke and taking care of us. I did not deserve this, but God chose to bless our family anyway. Wow.

Thursday, May 24, 2012

Safe Place

My safe place does not have walls. It is not a physical place that can be felt or seen. This place is somewhere deep inside- somewhere inside me. I go to this place quite often. It is a comfortable place. I have read somewhere that mothers of children with disabilities can have something called "Mask Syndrome". Honestly, I think anyone can have this syndrome. We all put on a mask that we sometimes hide behind. To others around us, we are happy and we are strong. Our lives are just fine. There is nothing wrong. On the outside, all is ok, but inside we are in so much pain.

I can tend to wear that mask. In some ways, wearing a mask is ok. There are not many people who can handle all of the trouble that you are dealing with inside. I don't really want to admit that I am dealing with pain. I just stay away from thinking about the pain I deal with. I am more comfortable writing through it.

I deeply love all of my children. Each one of them present challenges that are unique to them. Luke's challenges can, sometimes, overwhelm every other challenge in my life. I try to not let it overwhelm me, but there are times in which it cannot be helped.

I took Luke to the chiropractor today. Luke was in a good mood, but he was pretty stimmy and was quite loud. I actually began to feel embarrassed. The chiropractor enjoyed Luke and Luke thought his little back popper tool was awesome, yet I felt stressed. I know my affect reflected what I was feeling. Knowing that the doctor could see this made me feel even more embarrassed.

Why is it that I cannot get over my emotions? It's like my feelings cycle. Sometimes I am ok with everything. I go for weeks without feeling stressed about Luke. Then, it changes. I get so mentally exhausted. It is only when mental exhaustion sets in that I begin to feel like I cannot go through this stuff with Luke alone, yet I am alone. I go to every appointment. I have been to every IEP meeting. I read the notes from school and then respond. I need to have some fun. I need to enjoy my life. Everyday, I focus on God. Anytime I am tempted to let myself sink into a funk, I think of all God has done for me. I am continuing to focus on God today, but I felt that I must get all of this out. It is impossible to continue forward movement when pain is holding you back.

Wednesday, April 18, 2012

Pushing Past My Pain By Serving Others

Honestly, I am so thankful that God gave me the ability to use my pain to help others. Over the past 4 years of Luke's life I have been down many roads, and now I believe I am on the right one. I can acknowledge the fact that my heart hurts for Luke. I see him regressing in some ways and it just tears at my heart. I constantly wonder if it is my fault that he is not progressing more. Would he be further along if I were able to stay at home with him?  What can I do to help him? Which behaviors are just bad behaviors and which behaviors are a result of him not being able to use words to communicate? Is he happy? Is he anxious? Does he get scared? Is he hurting? All of these questions and very few answers!!!

So, instead of concentrating on these unending, open-ended questions, I choose to focus on my teaching of kids with autism and moving forward to serve others going through what I am going through. God has given me great ideas. Chasing Away, my FB group of mothers of children with various disabilities, is one outlet for my pain. I find support with these ladies and I am also able to give support.

My second, God given, idea is my "Care. Don't Stare!" campaign which I have not yet started. My brother-in-law did the artwork on my logo...


The basic principal behind this campaign is the following;

I would like to educate the general public on how to respond to a person with disabilities and their family when out in a public place. There is so much information out there about what not to do. Many people think that just ignoring the family and the individual is the best plan, when that is actually offensive to most families. I would like to put a list of "Caring Actions" the public could choose instead of just ignoring the individual and their family. (I am planning to use the input of others to create this list) 

© J.Daniel 2012 

I am still developing the whole idea, but I think this is a campaign that is needed. 


I will continue to use the Word of God, my relationship with God, my faith, and my service to others to fight pain. This is a battle easily won with Jesus Christ on my side :) 


My Inspiration...

My Family- My Inspiration


 The Daniels missing Logan

 My Lukie- Major Inspiration

 Sydney is Luke's loyal caregiver

Lukie Daniel: Mommy's inspiration. You give me a reason to push forward.

God gave Luke to me for a specific purpose. Luke was born to bring glory to God. 

Monday, March 19, 2012

Perceptions: The true difference in being a mother AND an educator.

I was born with the heart of an educator- caring, compassionate, passionate, and strong. I have spent a good amount of time with all kinds of educators; teachers, therapists, administrators, support staff, etc. I have listened in on all kinds of conversations involving every different kind of local educator. I have been teaching for 5 years, all together. I have been a teacher of children with special needs for four of the five years. I am passionate about advocating for the education of children. I will always be passionate.

Early in the year of 2008, when Luke was just months old, I realized that something was different about this child. Little did I know, at that point, that he would not walk or talk or be capable of engaging in activities with peers. I did not realize how "neurologically young" my little one would be. None-the-less, this realization changed my life. I ceased being just an educator with neurotypical children of my own. I began the journey of being a mother of neurotypical children and of a child with special needs. This changed my view on how to parent completely. I  began to learn how to juggle the needs of three high maintenance (slightly older) children and the needs of a non-demanding, yet needy also, child with special needs. This also changed how I would view my chosen profession from that point on.

I have recently been told that I cannot allow my experience as a parent to dictate how I make choices as a teacher. How can that be possible?! I know the every day reality that my students and their families live. I cannot choose to ignore it. I must adhere the the principles and ethics of my profession and I also must adhere to school and district guidelines. I also need to adhere to my personal standards. These children ceased being case-studies and experiments to me long ago. Every day, I fight a battle between my professionality and reality. I see the pain in each parent's eyes. I know, from personal experience, how it feels to be surrounded by "professionals" who are constantly telling me that what I do is simply not good enough.

There is a fine line that is easy to cross when communicating with parents. Some parents only have one child to focus on and do not choose to work. These parents, often-times, want to know strategies to use in the home to help their child. So, as a professional, you can be more open about your ideas for strategies and techniques to use in the home for the benefit of the child. If this kind of parent has asked for advice, the teacher should give it freely while remaining understanding that most parents are not capable of following through on the highly structured activities that take place in the classroom.

There is another set of parents who are quite opposite of the first set. These parents have multiple children and also have to work to support their families. Parents of neurotypical can get quite overwhelmed with daily life. I will always be sensitive to that. I will say that I believe parents of a blended family, with neurotypicals and a child or children with special needs, live a life in which every second of the day can be overwhelming.  This kind of parent may not want to know what you think they should be doing different for their child with special needs. Every day is survival. Each moment of their time at home is consumed with multiple issues that require their undivided attention. If you are asked for advice, give advice but remain fully aware that many things you suggest are just not reality for this specific family.

I belong to this group of parents. I want to give you a window into my world for the purpose of helping you understand that I am trying my very best to be the very best for everyone in my life and I live a life in which there is way too little time to do way too much.

On Mondays through Fridays, I wake up at 4:30am. I use the next hour to get myself ready for my work. I walk out of my dark bedroom (Marty is still asleep) at 5:30am sharp. I turn on the tv to channel 19 and watch Joyce Meyers for 15 minutes while packing my lunch and snacks and getting the coffee brewing. At 5:40am, I turn on Sydney and Gracie's light and say "It's wake-up time". I go to Luke's room to pick out the girls' school close and stop for a moment to watch Luke sleep. I cover him up with his little quilts and tell him that I love him. At 5:45am, every other week, I wake Logan up and say "Good morning 'Yogan', it's wake-up time.". I then go back to the girls room and spend another 5 minutes nagging them until they wake up and start getting dressed. By 5:55am all three of the older kiddos are awake and absent-mindedly wondering into the living room. I brush the girls' hair and remind all three to brush their teeth. At 6:00am, I turn the tv to channel 13 to watch Believer Voice of Victory with Kenneth and Gloria Copeland. The coffee finishes brewing while I watch for 8 minutes (steadily having to remind the kids to be quiet so Mommy (Mrs. Jaime) can hear the Word of God). At 6:08am, I walk back into my dark bedroom, kiss Marty on the forehead, and tell him to have a wonderful day while pleading and applying the Word of God for protection over him, myself, our children, and our parents. At 6:10am, I say "load up!" while pouring my cup of coffee. The kids and I get into the Yukon to go to the bus stop. At 6:20am, the older three are on the bus and I am off to work. ( At 6:45am, Marty wakes up to get Luke ready for school and Luke is off to school by 7:10am. Marty leaves for work shortly there-after). I arrive at Ensley at 6:45am. I quickly sign in and walk the .2 miles to my classroom at a quick pace. My students arrive at 7:20 and my work day truly begins. My students leave between 1:40pm and 2:10pm. After the last parent pick up, my teacher assistant (s) and I go for a 2.5 miles walk around the school grounds.

I usually arrive home, in the afternoon, at 3:30pm. I step into my kitchen knowing that I have four and a half hours with my children before they go to bed and I am too exhausted to accomplish anything more. (Marty arrives home about 5:00pm, on average). My first order of business is to start a load of laundry and put away clean dishes from the night before. Once my kitchen is in order, I begin dinner. I make the three older kids go outside and play while Luke crawls around the house (enjoying the temporary quiet). Prep time for dinner is usually around 30 minutes. After I put meat in the oven, begin boiling some water (for noodles, potatoes, etc), and put a veggie on the stove, I take my 15 minute "me" time. Usually it consists of doing crunches and other calisthenic activities and/or checking Facebook or email. As I continue dinner, I take out the first load of laundry and continue the cycle. I also check on Luke frequently and keep him from banging his toys against our hard floors and eating the paint off of the corners of the walls. I also change his diaper and give him his afternoon sippy cup while doing household chores. At approximately 5:30pm all of the older kids walk in the door and begin milling around and arguing with each other. While I finish dinner preparations, I put out the "fires" that the older kids create. Dinner is served around 6:00pm usually and tends to require my direct attention. Luke is brought to the table and is seated in his chair. Sydney and Gracie are not to sit next to each other and Logan usually sits between them. This can create a stir, but we do what we have to do. We make plates with the dinner food for each child, then we serve ourselves. I always sit next to Luke and assist with his feeding during dinner. Most of the time, I hand feed him as a result of not having the time or energy required to clean him up. By 6:40pm all six of us are fed and Marty and the kids bring their plates to the sink for clean up. I send Logan to the shower and 15 minutes later, the girls take a shower. Marty will go to our bathroom and give Luke a shower with him. At 7:30pm, all (except me) have showered and the family gathers in the living room to watch tv together. At this point, I am exhausted. I fix Luke a warm sippy cup with melatonin and rock him in our recliner. Marty leaves for his second job at 7:40pm. He works from 8:00pm until 12:00am and usually does not go to bed until 1:00am. At 8:00pm, all kids are in bed and I go to my room to watch tv. By 9:00pm, I am asleep. My next day begins at 4:30am.

The only day that differs is Wednesday. We eat church dinner at 5:30pm. Marty goes to his Men's Fraternity meeting and I walk the church grounds with Luke. Marty leaves for his second job at 7:15pm and I go to choir at 7:15pm until 8:45pm.

So, let me ask you, what more can I possibly fit into my day? What more could any working mother or father do? I sincerely ask you, is all of this not good enough?

It is food for thought for parents and for educators. Are our expectations of parents too crazy? I will continue to push my students during school hours and I will continue to be sensitive to the reality that each mother and father lives every day. It turns out that I was born not only to advocate for students, but also advocate for their parents.

I AM A MOM-ECATOR!

Thursday, March 8, 2012

How Does This Make You Feel? Care. Don't Stare!

Care. Don't Stare!
How would you feel if the eyes of the public were always on you, judging you?

A common story I hear from parents who have a child with a disability is that they have a hard time dealing with the way society judges their son or daughter when out in public. It is truly a common theme among parents of children with disabilities. Not many people understand that we parents have gone through a grieving process. When we were pregnant, we would dream of what our child will look like and sound like. You think that if you have a girl, you will dress her just so and have a wonderful relationship with her. If it is a boy, you a ready to get him involved in sports. As soon as we came face to face with the fact that our child was different, we had to change directions totally. We had to find new hopes and dreams. For some of us the dream is to see him walk and run and talk and play. For others it is that their child will be the genius this world is waiting for. Whatever the dream may be, we look at our little one and see the hope for the future.

When we go in to the world with our beautiful ray of hope, we quickly find that the world doesn't see the hope in the situation we have. Most stare and many make quick judgments about the parents. Instead of passing us by, public joe chooses to make us feel awful about ourselves and our child.

The road we walk is filled with champions. The champions know what it is to love unconditionally. We see the best in our child and it angers us when others refuse to see what we see. 

This will be continued soon...

Friday, February 3, 2012

Becoming...

The Daniel Family Christmas 2011
Marty, Jaime, Logan, Sydney, Gracie, and Luke
Taken at PapPaw and Mimi's House (The Rogers' Christmas Celebration)

The Rogers and their lovely grandchildren - Christmas 2011
PapPaw, Mimi, Logan, Gracie, Luke, and Sydney


Luke's Christmas Experiences

Daddy and Luke bonding time with presents. Pure joy!


My BIG Tampa Family
We took the kids (Logan, Gracie, Sydney, and Luke) to see Grandma A. They all adore her. Luke had a chance to meet some extended family that Mommy hadn't seen in years. It a blessed trip to Tampa

To Grandma and PawPaw's We Go- finally!
Luke truly enjoyed rolling his bus up and down the hardwood floors in their home. He feels perfectly comfortable there :)


Becoming...
We are all truly unique, yet we are becoming a beautiful blended family.