I am curious where are the parents are with children that have special needs.  I am reaching a point of true need.  I have a 10 year old daughter with Autism and ADHD.  I feel like we are alone in our quest for spiritual help as well as a spiritual support group.  It seems outside of church the support groups are very negative in the fight for resources and getting your childrens needs met.  We are also challenged with helping our church to understand our situation, and how different it is day by day.

Anyone who can respond and help, please contact me!

Kristin Powell

LAICC

South Region

It has been a challenge for a member of my bible talk in the past and the way that we attempted to address it was through the bible talk. They knew the child the best and were able to assist the KK teachers by providing 1:1 direction for him.

If that is to much then maybe as teachers rotate through you give them tools that work for you in giving direction for your daughter.

I am a parent of a child with special needs. He is hard of hearing. Other things emotional, mental, and/or psychological could appear as he gets older due to his Goldenhar's Syndrome. He also had a condition called a choanal atresia that was corrected by surgery. (Choanal atresia means that his nose didn't open in the back. Babies are nose breathers, so essentially he could not breathe at birth.) Otherwise, he is doing quite well and is getting ready for preschool this Aug.

I can relate to what you feel. My wife and I have felt alone in our quest for spiritual help, too. It's not like folks around us don't care, but it can be difficult for them to understand sometimes. We deal with circumstances that are quite different and not always easily explained.

For example, I have to explicitly tell my son when I leave his sight and why. He cannot hear me walk away or hear me close the door to the bathroom to understand what's going on. I have to say, "Daddy is going to the bathroom. I'll be back very soon." Otherwise, he thinks I've disappeared and gets afraid that I'm never coming back. (That will change as he gets older, it's just to most straightforward example I could think of.) Well meaning folks have suggested that I am spoiling him or giving him too much attention. I have chosen to thank them for caring enough to say something. If someone asks, I will gladly explain the reasoning behind it.

He spent some time explaining to my son's teachers about the importance of language for him at an early age. We taught them a few signs and explained a few social things that he cannot really understand. Ultimately, one of us teaches in his class and my wife and I rotate every three months. When he is older, this won't be necessary, but this seemed best for now.

We got to explain a few things to a few folks, and that was a great start. We pray to be patient as we get opportunities to share with others.

My experience with groups has been different. I found a parent advocacy group that is very positive. Yes, they will do everything they can to meet the needs of children, but time with them is an opportunity to share our struggles, fears, and victories. There has got to be a more positive group out there somewhere.

When my daughter was born, she was also born with a choanal atresia. The doctor's were stunned. Siblings don't share choanal atresias, ever. I was afraid it would happen, but I was assured by doctors, geneticists, and counselors that it could not happen because it simply never happens.

Imagine my disappointment with God when it did happen. To make matters worse, she needed 9 surgeries to clear her nose whereas my son only needed to one. Her choanal atresia also prevented her from nursing, in addition to financial struggles and other things. It was a tough time for my family.

However, I truly believe that God does provide in all circumstances. I am no longer disappointed in Him, even if I don't have any clear answers yet. What I do have is the love of my wonderful wife and the encouragement of a few friends inside and outside the church. I can also enjoy my times with God again.

We still long for someone that can relate more to us and help us. Our group is great, but their kids are grown. The grandparents are at different levels of acceptance of my son's hearing loss. In some ways, I still feel somewhat alone as there are no men that are involved in these groups. Some days, that can be difficult to still have faith that God will not give me more than I can handle.

So all I can say is to keep trying. God will provide. I don't know when he'll provide for me or my family, but I know He will. I wish that I knew more about autism in order to provide specific help. I guess I wanted to let you know that you are not alone. I will pray. I hope that my sharing helps a little.

BTW I'm in Omaha. Our small church is about 90 folks. I will pray for help to arrive soon.

Your brother,

John Payne

Thanks for all the suggestions and sharing your lives.  After attending the Southwestern Christian Conference in Phoenix Arizona, I have been able to get in contact with a few teachers and specialist with Autism.  It has been very encouraging, I feel like God placed us at the perfect place at the perfect time.  I look forward to sharing more when I am able to.

I haven't been on in quite some time, so I thought I would post some progress.  This past summer we decided along with my daughters developmental pediatrician to take her off the meds to see how she was doing.  She did so well we didn't put her back on for the new school year.  The comments and feedback have been amazing!  She is a whole different girl, I think she was trapped by the meds.  She has definitely outgrown them, and the EXTREME rebelliousness is gone!  She is your typical 11 year old who seems just quirky lately!  Do not loose hope or faith that God will get you through your current trials!!!

Blessed!