This is us... take us or leave us but we rock!

This is all of us. We are goofy and we love each other deeply. Luke has an amazing support system.

I think about all I know and all that I am continuing to learn. Each family has a choice to make when it comes to their child with a disability- either the disability with rule them or they will rule the disability. It is wrong to allow a persons disability to become the main focus of a family. The disability is definitely part of the equation, but so are the goals you have as a family. Don't let yourself become so obsessed with your child's disability that you can't look beyond it. These kiddos are amazing and they have such huge potentials. Dare them to reach their potential and provide support for them to get there. There may a few fits and they will make you think that they can't do what you are asking of them, but believe me, they will thank you in the end.

PICA

This is a picture of Luke "stemming" on the wall at his doctor's office. We have a name for the eating behaviors Luke has been engaging in for the past several months- PICA. His obsession with walls and eating paint has become overwhelming. We also found out that he has lost 2.5 pounds. It is really hard to deal with because I don't know what is causing it.

I try and try to provide all the nutrition he needs. He gets his meals, snacks, and extra stuff in each sippy cup, yet he is losing weight. I guess it is easy to feel hopeless about Luke. Everything with him is a struggle. I am so thankful for my mother. She is such a great support. Other than her, I feel like I am going through this alone. I worry and dream and have panic attacks.

It feels like my heart is breaking over and over.

New concerns- Dr. Happy, here we come!

So, the wall licking and paint eating is getting worse. Instead of one wall, there are 6! I have documented this and taken pictures. He is also chewing pennies. He will pick a penny out of a mess of silver. There must be something in it that he likes. He also ate handfuls of sand from our backyard play area today. I didn't realize what he was doing until he had eaten a bunch. I spent all day yesterday worrying that he was going to harm himself with all that he ate. He is also eating mulch. We took him to a local park that has mulch on the ground. We put him down and he tried to eat the mulch.

This is all so concerning. I know that he is like a 1 year old mentally and 1 year olds eat sand and stuff, but they don't eat wood and paint. I have a student that has PICA. PICA is a disorder in which the person craves and eats stuff like dirt, clay, sand, etc. I am just concerned that Luke is struggling with the same thing.

On the positive side, Luke's personality is definitely getting brighter and happier. He smiles and laughs and just has so much fun with himself. He reaches for me and Marty. He actually is showing a preference for Daddy. In normal circumstances I would be jealous. In this circumstance, I am so happy! Marty and Luke have such a good time together.

I love my son, but sometimes my concerns completely block my view of the good things. God help me...

The Weekly Visits to the Doctor, Digestion, and The Object of His Affection

The Weekly Visits to See "Dr. Happy"-
Lately we have been spending a lot of time at the doctor's office. Luke has been sent home from school almost once a week since school began in late August this year. There are a couple things he has chronic issues with;
1. congestion, 2. ear infections (just starting recently), and 3. running pooh pooh. Luke has dealt with congestion since birth. Since having his adenoids taken out, he has had congestion less often and it has not affected his breathing as much. This, of course, is a big relief . He has just started getting ear infections. He has had two double ear infections in two months. This means that he has had two big doses of antibiotics.
Luke eats pureed food, so he has runny pooh pooh. This leads me to my next subject- digestion.

Digestion-
During Luke's last visit to the doctor (Friday), the doctor looked at how many times Luke has been sent home from school as a result of his pooh pooh issues. She noticed a pattern and said that we, of course, know that he has an "unknown syndrome" and does not surprise her that new health related and behavior related issues have begun to show up. These new health related issues are probably a part of the syndrome that has not been identified. The doc hypothesizes that Luke's body is not digesting foods that contain carbohydrates. This is something we agree about. I have also hypothesized that he is not digesting properly. So, now, his last poopy diaper is wrapped up tight and is in a ziploc bag in the refrigerator. It will be delivered to the doc tomorrow. I am actually hoping that it will give us some answers. Hopefully, all we will have to do is make some dietary adjustments. At least it gets us moving in some sort of direction. This now brings me to my last subject- The Object of Luke's Affection.

The Object(s) of His Affection- Our Walls.

Not only is Luke scratching our walls with his little fingernails, he is now licking the walls and using his teeth to scrape the walls and eat the paint. I, of course, stopped him, but he keeps going back. If it's not the wall in the picture, it's the corner of the wall across from him or in the dining room or in the bathroom or in his room or it's the wall in his sisters' room where a basket sits with books in it. He loves baskets also, but they pose less of health threat to him. 

I am upset. Two new things have come up. We first think about having to change his diet so he can digest his food. We now have to think about completing a Functional Behavior Assessment (FBA) on my son for this wall licking, biting, and paint eating behavior to keep him from doing this brand new behavior. It's one thing if he uses his nails. It is completely different now that I am seeing him eat the paint he licks or scratches off. 

What's next, I wonder. 

I am thinking that I need a break. I don't think I can handle worrying anymore. He was making so much growth. Now, we seem to be regressing. I don't know. I am just upset.

Blah

My anger has gotten the best of me lately. I have tried to talk myself out of it or think myself out of it, I guess. I am worn out. Being a teacher of children with autism has given me a huge shot of reality when it comes to Luke. I focus on the positive or I try to, for the most part. I accept that he is different, yet I find myself feeling sad. What a mixture of emotions. Thank you, Lord, for making me a woman.

My older three are having problems of their own. Behavior and academics are challenging. I often overreact because I do not want anything bad to happen to them. Any problems that are occurring, I want fixed- immediately.

I am blessed with my job. I am successful. I have worked hard. Family life is challenging. Really, the challenge is the turmoil that is going on within each of us. We have a blended family and each of us have our own unique personality and inner challenges.

So, why write all this junk? I want to remember the challenges. I do not want to dwell on them, but I do want to remember where I have been so that I can remember who has brought me from that place. Growth cannot occur without questions and emotions. How can you discover who you are and what you believe in without questioning? We teachers have learned, through much education and training, that it takes questions to learn. You must ask higher order thinking questions in order to help others find the answers in themselves. So, this blog is an answer to the question, describe how having a child with disabilities has changed your life for the better and what challenges it has presented. Describing my emotions- the good, the bad, and the ugly- has allowed me to understand what God has really done in my life.

He has given me the direction that I have prayed for. He has provided the drive I have needed to succeed. He has also provided the grace and mercy to cover the many mistakes I have made a long the way. Logan, Sydney, Gracie, and Luke have shown me what true love really is. God gave me my children to help me discover how He loves me.

My Buddy Who Has My Heart :)

Luke and I have so much fun together. He's been my little "water buddy" for a while. When he was a newborn, he expressed that he hated water. I just thought it was a newborn thing, but several months later, he was still freaking out during bath time. I was realizing that it was not just a boy thing or a newborn thing, it was a sensory thing for Luke.
Kids with disabilities have sensory issues. Some are extremely sensitive to noise. They cannot endure loud noises. Something inside their brain goes into overload when they in a loud environment. Other children with disabilities have sensitivities to bright light. The bright light overstimulates them and they become scared. Luke has touch sensitivities. He is especially sensitive with his feet. The first time he stood on grass with his feet, he flipped out. His therapists would try to rub his feet with beans and rice. It was torture for him.
Bath time was torture for the longest time. Even if his water was luke warm, his skin would turn bright red. His hands and feet would look like they had been dipped in boiling water. Since I new it was sensory problem, I decided to try a little therapy of my own. I started taking baths with him. He would lay on my chest and I would gently wash his body. Once he grew comfortable with this, I would physically take his hand and teach him how to splash. He soon was laying on my chest and splashing at the water. So, I moved him so that he was sitting in the water. We continued the splashing. It took a year, but we finally reached the point that he would sit in the water without me being in the tub with him. Now, there is no fear or discomfort. Only when I spray his face (by accident) with the shower head does he fuss. I am so proud of him.

This experience with Luke taught me so much. I now teach pre-k aged kiddos with autism. Each of them have their own specific and unique sensory needs. I know, from experience, that all I have to do is provide repeated exposure to situations that are uncomfortable for them in order for them to change and grow.

Having Luke has also taught me how to treat the parents of my students. I think back to how much heart-break I went through. I have felt pain and fear. I can see this is the eyes of my students' parents. So, I am planning a "Fall Celebration" for my students, teacher assistants, parents, grandparents, and front office staff. We will have turkey and dressing and mash potatoes and mac and cheese... and of course, we will have McDonald's McNuggets :) We all deserve a little celebration!

Another huge step in the right direction

Luke's teacher sent me a video text today. The video was of Luke eating snack. He was feeding himself, out of a bowl, with a spoon. It brought tears to my eyes. He has started walking with assistance and is feeding himself. Just a little over a year ago, he wasn't even sitting up without support, yet he has grown so much in the past six months.
God has done a great work in my life. He has done a great work in Luke's life. He has been there, holding us. The past couple of years has been full of ups and downs, and we have become stronger because of them. I guess that is part of being a Christian. We all know we will have trials. The difference is that we have true hope. We know we may be riding the waves of life, but we also know that we will stay safe because it is Jesus who will calm the waves.
It is so hard to not know what is really going on with Luke. In some ways I would like to have a group to belong to. A group to advocate for. Amazingly enough, God has given me that through my profession. He has given me hope through seeing Luke grow. He works it out. He knows what we need and what to do for our individual situations.
It is amazing what one small miracle can do for a family. Thank you Lord for giving us hope!