I will praise You in this storm...

I look at my son and all I can see if perfection. I know, in reality, he has autism and cerebral palsy and cognitive delays, and he is non-ambulatory, and he has gastrointestinal issues, and... the list goes on an on, but to me he is Luke, the 3 year old little boy that I am so in love with and would give my own life for. So, I am caught in this in-between world. My heart and spirit know that my son is something more than others give him credit for. My mind and this world tell me that he is "low functioning". I can be reality based, but I long to dream for my son.

I look at my family and I see beauty made from ashes. Marty was a broken man. I was a heart-broken, hopeless woman. We came together and made something so wonderful. God created a family from broken pieces. We are so blessed.

Our family is currently on stormy seas, but we have hope. Jesus was on a boat, a storm was fast approaching, the waves were building, yet he was asleep. The disciples were flipping out, yet Jesus was asleep. Once he awoke, he went to the waves and said "Peace. Be still." and the waves were still and the wind died down. There is a mountain in front of us, but our faith is strong and we are telling that mountain to move in the name of Jesus!

So, while I am dealing with sadness, grief, and anger, I know that He that is in me is stronger than this world!

Praising God, But Still Needing To Vent

This is the most recent picture of Luke that I have on my computer. He's such a sweet spirited child. He smiles and laughs and is generally low maintenance. How blessed I am to have a child like him! I pick him up and he puts his little head on my shoulder and touches my arms with him hands. He hugs me back sometimes and I drink in the moment. Having a child like him has made me really appreciate the small things. When my daughters tell me that they love me, I treasure the fact that my daughters and I have a great bond. When I sit with my step-son and he tells me all that he knows, I thank God that my step-son talks to me. I am a truly blessed woman for I have been given the opportunity to love selflessly. Being blessed does not dismiss me from going through trials, though.

The primary question that continues to run through my head is; "Why does everything (i.e., services, education, diagnosis, health issues, etc.) require a fight?" In other words, why in the world does caring for Luke require such a fight and so much energy? He has no diagnosis, so I am having to fight for him to receive one. Why does he need one? Well, with a diagnosis comes the privelege of receiving services and therapies that he is in great need of. Why does he need services and therapies? School is not enough.

I wrote the first two paragraphs of this blog over a month ago. I wish I had more time to write. I would love to be able to have the time to reflect on all that is happening. There are so many great lessons I am learning right now. I would like to list some of them so that I may come back and thoroughly cover the subjects one by one;

1. Never speak out an opinion of another person's parenting skills unless you know, without a doubt, there is some sort of abuse or neglect occurring. You are not in their home, therefor, you have NO IDEA about what is really going on.

2. No child is BAD. Every behavior has a function. There are adult who are bad, but there are no children who are bad.

3. I am not alone in my frustration.

4. Men do not understand the emotions of a woman.

5. You cannot expect those who do not have children with disabilities to really understand what you are going through.

6. Always have a pre-IEP meeting with your child's teacher before the IEP. You all want to be on the same page so the IEP meeting flows nicely and you are not totally blindsided by recommendations.

So, I have plenty to write about. I wonder how many months it will take me :)

Blah.

Today was the first day that Luke attended his "Special Friends" class at church. This was, of course, at my insistance. He had been with the 18 month olds since he was 2 years old. Luke will be four later this year and I felt that it was time for him to move. His Special Friends teacher was great with him and he seemed to really like it in there.

So, why would I be feeling sad? It's just another moment of emotional upheaval. I feel guilty for feeling sad. I guess I go through times when reality really hits me.

I am just tired.

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.