November 2, 2014
We took Ethan's walker to church today. I only recorded a few seconds, but he walked around for probably 5 minutes of more exploring the church hallways and the gym. After resting for a few minutes he walked a little bit more, but we could tell he was worn out.
Click here to view the video.
Click here to view the video.
Although we have not yet become members of the church we've been attending regularly since moving to Peoria, we are starting to feel more connected, getting to know more people, and are feeling very blessed that we've been welcomed with open arms and hearts. Finding a church home is hard for anyone, but when you add having a child with special needs to the mix, that often adds an entirely different layer of complexity to the situation.
They are hurting.
This morning we had a meeting with Ethan's "team." At this time seven ladies (and a possible 8th) have signed on to be Ethan's one-on-one in the nursery so that Jeff and I can attend Bible Study (Sunday School) and the Worship service. We didn't get a chance to meet all of his team members this morning, as some of them had things that kept them away from church today, but those that we did meet seemed to be thrilled about getting to spend time with Ethan. Ethan is in the "crawler" room at church, which seems to be the most developmentally appropriate at this time. So, his one-on-one will push into the "crawler" room with him and will provide him with the attention and assistance that he requires.
We just can't thank everyone enough for volunteering to minister to our family in this way. Knowing that there will be someone who knows about Ethan and who feels comfortable caring for him is crucial to us being able to enjoy attending church. It gives us the opportunity to be participate in Bible Study and the Worship service without constantly worrying about Ethan in the nursery.
Thursday morning I got to run with a new friend. She is a mother of two, her oldest has significant special needs. As we ran and visited we talked about lots of different things and spoke about church/faith for a significant part of our run. Each of us consider our faith very important to us and wonder how families who can't take comfort in the promises of God do this, yet we both agreed that going to church isn't easy when you have a child with special needs. This is not the first fellow mom of a child with special needs that I've had this type of conversation with and it really is an issue that most churches are doing little to address.
Did you know that it has been estimated that 80% of American families who are impacted by a disability do not attend church? In the USA 20% of our population is considered disabled! While a very large percent of Americans (those impacted by disability or not) have no desire to attend church, there are many who might but don't because of any number of factors. [These stats came from Ellen Stumbo's blog.]
Why might a family impacted by disability who would be open to attending church not go?
- It's just too hard.
- The church building itself may not be accessible --- no ramp to get inside the building, no elevator to allow access all the parts of the building, narrow hallways, no handicap bathrooms, etc.
- There may not be an appropriate "place/setting" for their loved one with disabilities.
- There may not be enough willing trained volunteers to care for their loved one.
- They may not feel welcomed by the church.
- When you or a loved one is hurting and there is little that you can do to change the situation, it can be normal to ask "why," and to be angry at God and the world in general.
- Sometimes it can be hard for parents of children with special needs to be around "normal" families and children. Typically this isn't because we are mad that other people have healthy typically developing kids (we hoped and prayed for healthy typically developing kids too), it is just that we are grieving that we don't. Please consider checking out, "On Wondering What Your Kid Would Be Like Without Special Needs," and "The Mom I Would Have Been" to give you an idea of why my heart often hurts when I am around "normal" people.
- Many Christian families have actually been told if they just “pray hard enough,” “have enough faith,” etc. that God will heal their loved one. While it is true that our Lord is the Great Physician and does at times perform miraculous healings, there are other times that He doesn’t. When a family feels like other Christians are blaming them, their sin, and/or their lack of faith for their child’s continued special needs/behavioral issues/complex medical conditions this can leave a very bad impression of the church.
- People are sick of the platitudes. "God has a plan/He works in mysterious ways," "God only gives special children to special parents," "God won't give you more than you can handle," "You are so strong, I couldn't do it," etc. get old and they hurt. We are all guilty of using them, but when you hear them constantly it can just drive you crazy and make you want to speak your mind and tell that person exactly what you think. I will admit that I have done more than want to but HAVE told a few people exactly how hurtful their "encouragement" has to me.
- For some insight about what NOT to say to parents of children with special needs, please consider checking out the following perspectives/posts:
- 15 Things Never to Say to a Special Needs Parent
- 5 Things Not to Say to a Special Needs Parent
- 9 Things Never to Say to a Parent of a Special Needs Child
- What NOT to Say to Special Needs Parents
- 10 Things You Should Never Say to a Special Needs Parent
- Here are some perspectives/posts about what to say and how you can support families impacted by disabilities.
- What to say to the parent of a child with special needs? Here's a start.
- 17 Things You Can Say to a Parent of a Child Who Has Special Needs Without Sounding Like a Jerk
- 5 Things You Can Say to The Parent of a Child with Special Needs
- What to Say to Parents of Children with Special Needs
- Supporting the Special Needs Caregiver
- Gifts for Caregivers
Families impacted by disability have in many ways became an unreached/unchurched people group. This is why I am so glad that the church that we've been attending is open and willing to purposefully engage and invest in us a family. It is my prayer that every church in America would consider if they need to be doing more to make sure that they are accessible to families touched by disability.