religious communities

Out of the 38 posts I have written here, a good amount include religious themes. It is something I struggle with. It is one of the subjects that causes me great stress. My OCD likes to fit issues in small, neat packages. Life is not made to fit in small, neat packages. Religion, in my mind, definitely does not fit in small packages. While I do subscribe to the fact that God's commandments are rooted in stone, I believe people tend to muck up the process.

Foster Abba blogged about the religious community and how they tend to fail special needs family here. And, I agree 100%.

In my experience I have found that most people in my religious community have no idea how to respond to my special needs son. There is a combination of people believing he is "normal" to thoe believing if we love him hard enough and prayer hard enough he will get better. There are also those who simply pity us and yet don't want us disrupting their religious experience.

I commented over on Foster Abba's blog about an exchange I had with a fellow special needs mom a few years back. She has an autistic son who tends to run. He runs outside and does not stop. There have been several occasions where he had to be found by the police because he was simply running with no concept of where he was. He was about 6 at the time of this exchange. A pastor who was in charge of welcoming new members and connecting with them called her. He was asking her how she liked the service she attended a short time ago and questions about her family. He was asking if there was anything they could help her with. She informed him she was the mother of a special needs child and had been attending the suppost group for moms. He encouraged her to attend Sunday School classes to further connect with people in the church. She explained that she could not leave him in Sunday School due to his running issues.

He said, "It will be fine. You need to trust God more. Perhaps you should have more faith. Coming to Sunday School will help you to grow in your faith."

Seriously. He said that. If it had been me, I might have just slugged him.

I think it does highlight some people's thoughts on special needs, especially those who believe in the healing power of God and the changing properties of faith. The problem as I see it is that my child's issue is permanent. It is not a choice that he can change, it is not something that I can change be believing.

See, here is where my OCD kicks in. I believe in healing. My brother was healed several years ago from Crohn's Disease. He has the tests and the Xrays to prove it. He boggled the minds of the Doctor's. This came directly after a prayer service at a Christian camp. He is a miracle. I get that. I believe that. My father believe he could be healed from his cancer. He never gave up fighting even in the very end. Hours before he died he told a pastor that he believed God would heal him and he would go home and surprise everyone. He had faith. God chose not to heal him. I did not ever question that.

Now to my son, I believe God CAN heal him, but that does not mean I am counting on it. I believe God can provide therapies and modern medicine to help me with his "healing". I believe God can provide support though through the internet. I don't think that because he is staying the same is a fault of my own shortcomings when it comes to religion.

rant

I feel like a little rant today. This may or may not stay up. Most likely it will since this is my blog and if you don't like it you can just ignore me.

I have seen a string of blogs lately about tolerance. I have a thing about tolerance. I think it is a good thing. I think far too many of us have too little of it. I think that we are all put on this Earth and have been given free will. Just because you don't think I believe the right thing does not mean that I am bad. It means I may have a different perspective than you do. It means I may have different experiences than you do. It means I have been given a gift of a mind and I can make up my own.

One blog I read fairly regularly even though I don't always agree with her (because newsflash we don't have to agree with someone to find them helpful or entertaining) just spoke about tolerance the other day. She was saying that the same people who preach tolerance are intolerant of large families. She went on to say that Christians are largely persecuted and left off the "hey let's show them some tolerance" bus. Of course I am overly simplifying the very well written blog post for my own purposes.

My comment was something along the line of "Do you think that people just seem less tolerant because it involves you. Sometimes I think I loose perspective when it becomes personal." I did not mean to bee offensive. I just meant that I think it s all about perspective.

I have come to believe that Christians are the least tolerant people I know. I think Christians (of which I count myself one) tend to judge everyone harshly. Christians today have forgotten about "Love they Neighbor". I think Christians are the least tolerant people I know. I think they are more concerned with evangelizing than loving. What ever happened to the you'll catch more flies with honey than vinegar?

Having tolerance for other people and their ability to make choices for themselves is something was not taught in my years growing up in the church. I don't believe you have to agree with other people's choices, but they are their choices to make. I cannot make someone chose my beliefs. I cannot make people follow my God's rules and regulations if they do not accept my God's omnipotence. This is something I think the church does not understand. I have no issue with telling people what you think is the absolute truth, but they still have the ability to accept it or not. Here's where I struggle with the church in most instances . . . just because they don't accept it, doesn't make them less of a person. It may make them a sinner in your eyes, but aren't we all? It does not mean that we do not love them any less or give us license to disrespect them.

So what is the solution? I don't know. I hope I raise my kids with tolerance of others and their views. I hope to instill in them the truth that just because they don't accept what we believe that it does not make them bad people. If they indeed are bad people, it is not because they do not believe what we do. I also hope my children value justice and fight for those who cannot fight for themselves. I hope they learn to stand behind what they believe in and while they may not back down they will still appreciate other people's opinions. I hope they are good listeners and are respectful of others and their views. I hope they treat others as they would want to be treated. And lastly I pray that they learn Biblical truths and know that Jesus died to save them. I pray they act more like Him than most of his believers do.

affirmation

Today I had to go to the psychiatrist with both my daughter and my son. Thankfully he sees them together which is really convenient. He is a kind and wise, small indian man. I like him alot. He intimidates me, but I advocate for my kids and he respects that. I think he is amazing.

Today my son was obsessed with food. He seems to think that every time we leave the house we are going to eat out. In the middle of the med check he started in. I tend to parent by making the kids come to their own conclusions so that it helps them become problem solvers. It went something like this:

son: Can we go out to eat?
me: Son, did I just answer that question in the lobby.
son: yes
me: Does that mean I'll change my mind?
son: no. Can we stop and get something on the way home?
me: What did I just say?
son: No. I don't want Apple Jacks.
me: Is there something else you can choose?
son: yes.
me: Then we don't have to have this conversation right?
son: right.

I look up and the psychiatrist is smiling at me. My eyes got big and I said, "Sorry." He said, "Don't apologize, I so enjoy the way you parent." I looked at him incredulously and explained that I like them to problem solve. He said, "It is called the socratic method and it leads children to form their own conclusions by answering questions. You are a wonderful parent."

Wow. I was extremely proud of that moment. I don't always feel like a good parent let alone a wonderful parent. I need to remind myslef of this exchange more often. It felt good. (My favorite part is when we were leaving, the doc asked me "What is an Apple Jack?")

He has some quotations under the glass of his desk. My favorite one is :

“You cannot prevent the birds of sadness from passing over your head, but you can prevent their making a nest in your hair” – Wise Chinese Proverb

fretting

My daughter has developed some new compulsions. She started this thing with her hands a few weeks ago. She curls her hands into fists with her thumb tucked in. Then she puts her thumbs on the outside of her fingers. Then inside, the outside. She does it continuously. When I asked her about it, she said, "One, two, three, four is one, one to three, four is two." I realized she is making 4 movements then is counting that as ONE, then four more moments counts as TWO, etc. I asked her how much she is counting to. She said, "100, always 100!"

I must admit, it made me sad. It freaked me out. I saw the crazy. I saw her on TV in years on a "Obsessed!" trying to work through her OCD. I will also admit it made my OCD amp up like crazy. Since my primary OCD manifestation is ruminations, or worry, I began to worry about what people will think, how she will cope, if she will ever find a husband, will she be the crazy cat lady down the street, will she become a hoarder . . . see how bad it is? It sounds silly, but the progression is so seamless in my head it just takes on a life of it's own. I can laugh about it, but it still worries me.

When I see her doing it, I try to get her interested in something else. I will ask her to hold my hand, or give me a hug, or set the table for dinner. Usually that works. After a while she said, "You just want me to stop fidgeting." I agreed and she laughed.

Now she is doing something weird with her mouth. I think she is couting, but she is clacking her teeth together. She is making this crazy movement with her mouth. It is maddening. I am being full-out with this and simply telling her to stop. She usually does, but sometimes she replies, "I can't!".

My OCD immediately returns to crazy and then I stat freaking about how I caused the mouth thing to happen by stopping her from the hand fidgeting. Then I admonish myself for not allowing her to do that since it was less noticeable that the facial thing.

Do you see how maddening it all is? I can only imagine what this will all be like when she is a teenager!

sock it to me

My daughter has issues with socks. She hates them. They irritate her. It's not just the sewing across the toes, but it is also the weight of the fabric and how tight they are. She will not wear tights. She will wear legging tights since the feet are cut out.

We have found socks that she can tolerate for a small bit of time. I typically have not fought her about wearing socks to school. Even if I did get her to wear some, they would come home in her bookbag that evening. Last winter we had a couple pairs of stylish boots she would wear with skirts. It was cute, but leather knee high boots with no socks got SUPER stinky in a very short amount of time. We keep her shoes in the bottom of an armoire and no one wanted to open the doors to that armoire since it would smell so bad!

This year I decided I was going to win the Battle of the Socks. One morning she was being particularly obstinate and I said, "Do you want to wear a pair of mommy's socks?" I didn't really think it would work, but I thought it might divert her for a bit. She wears a size 2 in kids, so her feet are still fairly small, but it worked. She wore them willingly and much to my surprise she came home in them. The next morning she asked to wear mine again and I gladly agreed thinking I would take any short respite from the Battle of the Socks.

She came home that second day raving about the socks. I don't much like socks myself so most of my socks are thin and shorty's. We went upstairs and ceremoniously threw ALL her socks away and went into my room and split up my sock stash. She has worn socks without a fight everyday since! She actually asked to buy a pack of brightly colored adult shorty socks at the WMart that next weekend!

I win the Battle of the Socks!

reality

I feel like I have been kicked in the stomach. I was catching up on some of my regular blogreads this morning and I opened a favorite, The Bloggess. She was blogging about a regular commenter there who recently lost her husband. It seems her husband struggled with depression and committed suicide, leaving his young wife and two small children behind. I stumbled over to her blog at Random Ramblings of a SAHM, and read the story of the horror that began slightly over 2 weeks ago.

If you have read my first entry here, you will know that I struggle with suicidal thoughts. sometimes, if I am going through a particularly rough patch, I can easily envision crossing traffic without looking, or driving straight into a cement wall. I long for the peace that I think will come. I have said many many times that I don't think I will ever complete this desire, but I do think about it. There are times that I don't have any thoughts of this for months, maybe even years. But sometimes it is so strong that I can think of nothing else. I battle it. It is these times when I surround myself with positive things, my children and my husband. I try to relax. I try not to focus on the "crazy".

Today I think I came closer than I have ever come to understanding the devastation I would leave behind if I ever truly completed this task. I wept. I wept great, big tears at my work desk. I ache for this woman and her family. I actually feel sick to my stomach. I think it was important that I read this. I think every person who has ever battled this particular demon should read her blog. She gives a raw, and uncensored look at the pain, the grief and the questions. She is angry, and hurt and honest.

Jenny, The Bloggess, chose to share that she too struggles with OCD, depression and anxiety disorder. She says, "Someone once told me that he’d rather have “a broken, bed-ridden Jenny than no Jenny at all” and that kept me alive when I thought the world would be better off without me. But what he said was (and still is) the truth. Your friends and family want you…broken or not. Don’t leave. Speak out. Be honest about your condition to let others know that they can be honest with theirs."

So in honor of Tony, speak out. Tell someone that you are struggling with mental illness. Tell someone that you have thoughts that you can't imagine seeing the light of day. Tell someone. Don't leave. If you don't think you can, think of Tony, think of the wonderful woman and children he left behind. Think of the grief and the horror and the love he left behind.

For God's sake, speak.

expectations

I have learned over the years of dealing with The Oldest, with Fetal Alcohol Syndrome, that I need to lower my expectations. While reading a couple blogs lately, I have seen a common thread of parents who are rightfully upset that the child continues to make poor choices. They are saddened by the behaviors. They are tired of continuing to explain cause and effect. They are frustrated by the child not being able to control the impulses. They feel as though they have the same conversation every day. In some cases, they feel they make progress, but they go right back to the unwanted behavior the next time they are presented with the same choice.

I get it. I live it. I have been there more times than I care to think about. I have prayed the same prayers to heal my son's head. I have said, "How many times have we talked about this?" approximately 5 million times. It took quite some times for me to simply let it go.

A few years ago I came to accept what I cannot change. I came to accept the fact that he is not going to change. The organic brain damaged he suffered before he even took his first breath in this world will not be changed. When we adopted him, we accepted him as he was.

While I accept him and accept the fact that things may never change that does not mean that I cannot whole heatedly celebrate the smallest victories. It does not mean I give up and don't try to teach. It does not mean that I don't hold out hope that things will get better. It does not mean that I will not fiercely advocate for my child. It simply means I will not mourn when changes do not happen.

This change in perception has helped me cope day to day with the struggles. It has given me the ability to embrace who he is not who I hope he can become. It has taken the weight off my shoulders that I felt that I needed to make him better, that I was responsible for change. It has allowed me to not only LOVE him, but to ACCEPT the child he is NOW.

Does this make living with him any easier? No. It does not make the struggles easier. It does not make me happier to tell him the same thing I just did 3 minutes prior. It certainly does not make me ecstatic to find the Oreos hidden under the couch pillow. But it does take the pressure off me to change him.

I accept who he is and revel in the small steps he makes toward progress. I just don't expect them.

Does that make me a bad mother?

I don't think so.