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.

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.

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.

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 :)

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.

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.

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.