the program

My son was accepted to a program at the beginning of last summer. The program is not necessarily designed for kids with significant mental impairments, but we qualified and I thought we could use a bit of assistance.

The program is designed to offer parents some support for behaviors that they are dealing with in their adolescents and offers the children some mentoring time so that they can learn some skills. It's main point is to help eliminate the need for residential treatment. Some of the benefits were supposed to be respite, transportation, community involvement, volunteering and some flex funds.

I had to choose a provider who handles all the bureaucracy. This person fills out reports, coordinates stuff and offers support to the family. They are supposed to organized meetings and provide some volunteering opportunities.

To make a very long story that spans 8 months short, our person sucked. Initially I thought that this person was simply overworked and was dealing with some transitions due to some massive reogranization in her department. I gave her the benefit of the doubt.

She never really got it. I specifically picked her because of her background in dealing with kids with Fetal Alcohol Spectrum Disorder. Every time we would discuss some issue she would inevitably say, "I know, that's typical in FAS kids". After hearing this about 67 times I wanted to stand up and scream "You have no idea! You have never spent 24 hours a day with FAS. You have not mothered a FAS child with Moderate Mentally handicapped status. Shut up!"

Last fall the program for us began to fall apart. I started pushing for things that the program was suppose to provide. I kept pushing for an appropriate respite provider. I continued to ask about the volunteering opportunities. I wouldn't let the community involvement go. The monthly family meetings were not on the schedule, phone calls began to not get returned, we were not informed of stuff. We applied for a small security system with our flex funds and I could not get an answer about if they were approved. Lo and behold the boxes showed up on our doorstep.

Last month we had a meeting and we found out that because he had not made progress in his mentoring area that he was going to be discharged from the program. We knew he would never make progress. We knew he would not be able to look up a library book in the computer system and check it out on his own. We knew he would never be able to put together a recipe, make a list, hop for the items at the store and pay for them alone. We knew he would not be able to budget for an outfit and go to the mall, find one that fits the budget, make sure it is matching and then pay for it alone. We knew that. The program intake person agreed that this was more for us than for the typical child. We knew that it would give Dustin some much needed time away from home and us the same. We knew it would make him feel special.

His mentor started out with high expectations. After about 6 visits he began to really understand Dustin's limitations. He made it as fun for Dustin as the program would allow and still meet some standards. He understood what we dealt with on a daily basis.

The fact that services were being terminated due to him not making progress did not sit well with me. I spoke to people. I found information about the program. I spoke with someone who started the program here in our county. I pulled out the meeting agendas I had never really looked at and found that she was saying she had been making contacts. I found a lot of discrepancies. I found out that key paperwork was not done in the right manner. I tried to contact the coordinator since the meeting. In three weeks, 8 phone calls went unreturned.

This week I became fed up. I put in a call to the supervisor. We chatted. I agreed that I let this go on for far too long. I explained that I had given her the benefit of the doubt. I explained that coming from a foster parent background we were used to promises not being met. She asked if we wanted to program to continue. I explained that we really didn't. I was ready to wash my hands of all of it. I wanted her to make this easier and more beneficial for the next family.

Why does everything have to be so pickin' hard! Can I please just be given something that I should be entitled to without having to advocate for it? I did find out that re-entry into the program is fairly painless so we may look into that if we find we need to in the near future . . . with another coordinator of course.

medication needed

I missed my pills the last three days. I have not been feeling the greatest and I have been super tired. By the time I get upstairs I flop in bed and I cannot make myself get up to take the pills. (I take my Zoloft at night).

I think I will be double doing tonight. (My doc knows this is a necessity sometimes) I came home tonight and cleaned the kitchen like a mad woman. I broke out the steam mop, the hand steamer and a scrub brush and vinegar cleaner. I started on the floor, headed into the dowstairs bathroom, scrubbed the sink and ended up pulling out the stove and scrubbing the floor under it. (geeeee-ross) All of this was done while the oven was warming up for dinner. Woot!

My kitchen looks good, but I need to medicate the OCD tonight.

why here

So here is the deal. I am not foolish enough to think that people who would like to find out who this semi-anonymous blog belongs to could not. I write openly elsewhere. I don't want that to happen here. Why? With my oldest, I have no fear that he will ever find my writings since he cannot and likely will not ever read. If any caregiver finds our blog, everything I have presented there will help in them in understanding my son and his unique issues. I don't feel like I am betraying him, I feel like I am educating.

My daughter is a different story. I don't feel like her story is my story to openly share. She could come across her story very easily if I had shared openly with names and locations. I don't feel like I can do that. I also don't want the social stigma placed upon her that could follow. I am not so worried about the stigma of the diagnoses that she will likely carry, but the stigma of people openly discussing her and her behaviors.

If that sounds like a contradiction in ethics I am sorry. It is what it is.

My story is a mixture. I have no problem sharing my history with Obsessive Compulsive Disorder. I want people to understand what it is like. The anxiety along with the thoughts of harm is something that I keep close to my chest. I don't know why. I think for me it is much more taboo. Over the last couple years I have found myself telling people, but I have to have a rapport and a relationship with them or there has to be a really good reason. There are still very few people who know about this issue in my real life.

I think I am at a point in my life that is pretty easy sailing as far as the anxiety goes. Now, I am well aware that could change at any moment. I am learning how to cope and I am reading about others who suffer from similar issues and how things work for them in order to understand my own issues more fully. It is helpful.

As I said last week, reading Lori's blog concerning the aftermath of her husband's suicide has effected me more than any thing else. It is raw and it is real and it is painful. It is an eye opener and I am certain that as her story continues and as she learns to live and cope with the "after" as she calls it, she will have more interesting and healing revelations. I look forward to being on this journey with her in such a small, small way. I am forever thankful she is continuing to share. It is important work. She may not know how much she has touched others.

That's why. If you have landed here and wish to share this little place with your world, that would be welcomed. I know that so many others may have these same issues and simply knowing you are not alone makes the world less lonely, less harsh, and less shameful. Thank you for joining in this journey with me.

off the charts

I think charting my daughter's moods is a necessary evil that I am going to need to face. When we got the OCD diagnosis and she started on Zoloft we discovered that we were also dealing with a bit of a mood disorder. I have been in denial about the BIG bipolar diagnosis that I have yet to see on paper. It is still in the back of my OCD mind at all times.

I think I may be seeing a pattern of cycling. I really need to just put on my big girl panties and do some charting to see if it really is true cycling.

I don't know why it stresses me so much, but it does. I am well aware that my child is who she is with or without alphabet soup to define her, but it still seems so final to me. That is something I am going to have to get over.

On the OCD front, she is still fidgety. Oddly enough I think that her fidgeting might just be alleviating some anxiety because since she has restarted this fidgeting behavior her behavior at school (which typically is raging) has been non-existent. Her teacher has told me that she is a totally different kid than she was before. I am trying really hard not to let it bug me and I have been ignoring it. Win-win.

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