Renewed Excitement!

I went to a Disability Ministry Conference today and I was 
reignited for my Sunday school class and this vital ministry God has called me to.

One thing that was brought up a few times is how you need to get the pastoral staff on board with your vision. It's one thing for them to tell you disability ministry is a great thing and you should run with it. It's completely different when they get behind the call, supporting it from the pulpit, getting to know those in the congregation who have special needs.

"If the pastors don't have the vision, the ministry will die."

So I'm going to begin again, praying that our pastors catch the Lord's vision for disability ministry at our church. None of our pastors or board members have children or close family members who have disabilities. I believe with my all heart that they care about those with special needs, but they're afraid. They don't know how to interact with them. I truly believe they just don't understand.

And deep in my heart I feel called to educate them.

I came away from the conference with renewed confidence that the pastors will embrace people with special needs and they will one day become active members of our church. Leading and serving in the body of Christ. I'm excited for this again!

Do you have a family member with special needs? 
Are they accepted at church or at school?  

Fearfully and Wonderfully Made - Faith and Down Syndrome

This is my first Blog Hop! The question to answer is:

How has your faith influenced the framework within which you view / experience disability? How has that faith lens affected your perspective?

A great question. For me, my faith is everything. Websters Dictionary defines faith as: trust; confidence; to remain loyal; the virtue by which a Christian believes in the revealed truths of God. (Wow! Websters says that?!)

I am a Christian and I believe in the truths of God. I believe the little baby in the manger that we celebrate each December 25 was (is) the Son of God. I believe He was born of the virgin Mary, suffered, and died on a cross to redeem mankind. I believe God created a perfect world. He created man to have fellowship with Himself.

When Adam and Eve sinned, it changed the world God had created. It separated us from God. The world as we now know it is corrupt, evil and greedy. Everything God is not. I have faith in God because He has proven Himself faithful. When this world throws the worst at me, God has been there to comfort me and bring joy back into my life. When I'm the one messing up, God is there to forgive and accept me, just as I am. He never gives up on me. He loves me so much, He was willing to be flogged, beaten and hung on a cross just to reconcile me to the Father.

I am no longer separated from God but can come directly to Him, speak to Him, pray to Him. I believe He wants the very best for me. For all of us. That's why He created us, to have a relationship with Him.

When we found out Beth had Down Syndrome, we were in shock. We were overwhelmed. I was trying to remember what I had learned about chromosomes in biology class. When Chuck went home that first night he layed in bed and asked the Lord, "Did I do something wrong?? Why is this happening to us??" Then John 9:1 came to mind. Chuck wasn't thinking about what scripture would work in this situation, he was a little angry! He was stunned! He wanted answers! So when this verse came to mind, he knew it was the Lord speaking to him.

John 9:1 - As he (Jesus) went along he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be revealed in his life."

Chuck shared this with me the next morning at the hospital and we both knew that the Lord had a plan for Beth. We didn't have a plan! Not even close! Beth having Down Syndrome was from out of left field. No one in either of our families had a disability. But we had faith in the Lord and HE said, this happened so God could be revealed.

He had been faithful to us every single day before the day Beth was born so we could trust His promise that He would be revealed through Beth. And God has been revealed. The Lord has shown me so much of His character through Beth. He has shown me that Beth looks at the heart of a person, just like the Lord does. Beth doesn't care about your shoes and neither does the Lord. But she does care if you're kind, if you're respectful. She notices your heart, exactly like the Lord.

And He's been faithful every day since. Has it all been perfume and roses? Not even close!! But on those days that I'm at the end; when I just don't want to do it anymore, He's there for me. He uses my family, the Bible, His creation to bring me joy and contentment.

How has my faith, my relationship with the Lord Jesus Christ influenced the way I view disability?

It has brought me peace. It has reminded me that there is a plan and that everything's going to be okay.

SIS Assessment

When your child turns 21 in Washington State, they are no longer tracked by the local school system. They officially leave school and the classroom. Your childs life graduates from para-educators and therapists to job coaches and case workers. In school you have the IEP. The Individual Education Program. It monitors your childs academic progress and offers goals for the following year.

After graduation, your child becomes eligible to receive state funding or SSI. The state needs a process to insure your child really is disabled and entitled to this money. The SIS - Supports Intensity Scale - was published in 2004 but I don't know when DDD began using it. It is conducted every couple of years and measures your childs need for support in various areas of their life. It covers home life, community living, protection, health care and employment just to name a few. It measures the type of support, the frequency of support and how much time is devoted each day for support.

For instance, health care. Is Elizabeth able to call the doctor and order a perscription refill? 1. Does she need only Monitoring? Verbal prompting? Partial or Full Assistance?
2. Is this support needed at least once a month? Once a week but not once a day?
3. Do we support her in this less than 30 minutes a day? Two to 4 hours a day?

Beth had her assessment on Thursday. It is very detailed and takes almost two hours to complete. The case worker comes to your home, pulls out his or her laptop and the process begins. We have been very blessed with Beth's case workers. Both have been very friendly, patient and understanding of all my questions.

I've been told this assessment is conducted every three years, but this was our second or third year in a row. Not sure why. We agreed that with adults with Down Syndrome, the assessment results won't change dramatically from year to year. Beth's mental abilities, at 25 are not going to change so neither will the type of support she needs. Beth's case worker is now organizing the information and will type up the report. We should receive it in a few weeks.

I'm thankful there are people out there, working to create a process that includes me in the decision making about the type of support my child needs. Now if I can just get them to come clean her room.....