Last night, my dear wife wrote out an essay full of great thoughts on how to help families with special health care needs. She's been having some technical problems sharing that on facebook, so I'm reprinting it here so it can have a permanent home address/URL. Here it is:
I always worry about writing about things like this. It is near and dear to my heart. I worry what some might think, but my heart is absolutely breaking, and it has been for a little while now.
I am having more and more of my friends that are parents children with special needs that are deciding to take a break from their church services. The reason? They feel unaccepted. These friends are from the same religion as me, and from different religions. It seems to be happening everywhere.
We have always been blessed to be in wards that have been so supportive of my boys. When I hear these HORRIBLE experiences from my friends, I want to help them fight for the rights of their children, and I want to hold on to them, and tell them not to let others decide if they go to church or not... But then I can see exactly where they are. I know from personal experience that advocating for you child can be overwhelming and sometimes you just have no more to give. Again, my experience has been in different areas, such as schools or bureaucracies, not from our sunday church experience or the boys activities. We have been in great wards.
I don't know how to advocate for my friends to their local churches, because it could cause more problems for them. The only thing I can think to do is give some suggestions to people about how to work with families with special needs in your churches.
1. If you are not sure what to do with a person with special needs in your congregation, ask. You might be afraid that someone with physical needs might break if you touch them, or if they have behavior issues, that they may have a melt down. Just ask the parents and family what things they do in their own home to make the person at ease. Trust that the parent knows their child.
You may want to say, “So, I would like to learn more about your child. What does he/she like to do. What makes them really happy? What frightens them? When they are having a difficult time, what makes them feel less stressed? Are there things that you think could help us work with your child so they have the most enjoyable time?”
Parents want to do what is best for their kids. A lot of times someone in charge of a program at church might think that the answer is to separate the child with special needs from all the others. If a family thought this would be the best solution, they probably would not bring the child to church to begin with. Find ways to have the children in the same classrooms as other kids. For example, you can make a smaller class, and have more teachers for that particular class. Keeping the kids together is a great way for the other kids to learn that just because someone is different does not mean they don't have a lot to give.
When my little guy, who is in a wheelchair, was very young, we had an amazing primary presidency in that ward (primary in the LDS church, is the auxiliary organization that manages the children’s sunday classes). When he was starting to go to bigger kid classes, she invited every teacher in primary, and every parent with a child that had some special needs, and asked each one of us as parents to explain more about our kids, and to tell her what worked, what didn't etc. It was an amazing night for all those that came.
2. Never, and I mean never, ever, never, tell a person that they are unwelcome at church, and that they are being selfish to bring their child to church. Yes, this has happened to many. I have seen little kids in church do unexpected things. They have sworn in church, they have blurt something out, they have had a melt down, etc. And usually what happens is that we look at them, get a little chuckle, and watch the parent turn red. Usually that makes you smile a little more. We know the child is innocent. But when an older person does this, we think they should know better. But some of our kids, some of whom are even adults, may only have the cognitive ability to think as a child.
I can guarantee that the parents of children with special needs need to partake of the spirit in that meeting more than anyone in that building. They deal with this situation 24 hours a day, and many of those days are without much sleep, because of the care for their child. They need to take of the sacrament, talk to other supportive adults, and have a chance to renew the soul. Never take that away from a family.
Remember Matthew 24: 40: “And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.”
Would you really treat Jesus or our Heavenly Father in such a way as telling them they were not welcome? In a church?
Also, remember Matthew 19:14, which says, “But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven.”
3 If you are in a position in your church working with young adults, remember the special needs children
when planning activities. If you are going hiking for a scout activity, talk to the parent and explain that you are doing this activity and you want to know how you can include the youth with special needs. Do you need to take a couple of extra people to walk with a child that runs? My son is in a power chair, but we have taken a stroller and hiked with him to the arches in Moab. We did have to carry him a ways with a couple of us, but we did it, and his smile was far greater next to that arch then anyone else that had climbed to it, unless they were smiling because of his smile.
O we may have asked if there might be some other boys go for whom hiking is difficult, and those boys wait at the bottom with our boy and play games. Then when they all come down, they do a testimony meeting or some other fun activity.
If you are going to camp with the youth, don't assume just because someone has a special need, that the youth will not be able to go, or that it would just be easier for them to stay home. As a parent, there are many activities that we want to do as a family that frankly sounds easier to just stay home. But we decided when he was a baby that we would not lessen our life, that as long as our boy was alive, we were going to let him live, and be a part of that life. That is important to us, and our son loves the things we end up doing, even though I am usually ready for a nap afterwards.
This of possibilities. Don't say, “This won't work because....”, instead, say, “How are we going to make this work?”
Have the parents involved in the planning. I promise, we as parents do everything in our power to make sure our child is not hurt or put in a position that he could die, so if we think it is a good idea for them to be there, we know that it can be done. It usually means having more of a support team, having extra people there to help the one person. But as you feel the extra special spirit that comes from these kids, you will know it was all worth it. Allow yourself to feel this spirit.
If the other youth don't actively engage with the youth with special needs, be a example. Get them involved. Just saying, "Hi" because they are asked to doesn't count.
I have a great friend, she has a daughter that is non-verbal and went to girls camp. She was put onto a swing and she thought that was so fun. She laughed and laughed, which made all the young women in the stake laugh, and they all wanted a turn to push her as they all giggled and bonded.
4. And that will put me at my last point in this entry, as I have already overwhelmed most. But for those that are non-verbal, they most likely understand speech. Talk to them. They will get it. Don't just put an Ipad in front of them for 2 hours while they are supposed to be in class, watching Dora The Explorer. They could do that at home. They like to learn, they are able to learn. I had the most precisous girl in one of my primary classes. I will not forget the day that we were doing a play about Joseph Smith, when he was about to get his leg cut off because he was going to have to lose it. This little girl was non-verbal, but she made it known to me that she wanted to be his mother doing this. She walked up when I was asking about that part, these were all 6 year olds, and although she didn't say a word, she played the part and learned the story.
Teach them, just as you would someone that spoke the same way as you. You will learn that they have their own voice, it is different, but if you listen, truly listen, you will hear A LOT.
For my sweet friends that are struggling with this. I love you!!! I wish the best for you, and I hope you can find peace.