There’s an article that’s been going around Facebook the past couple of days and I just had to mention it here. It’s about the reality that 80% of families with “special needs” children do not attend church anywhere. This does not mean that they don’t want to, many want to – but they do not feel able to, or do not feel wanted. There’s a reason why this article has been all over my Facebook feed — it hit way too close to home for the “special needs” community… in fact, everyone – every single one of us – could relate to it. Those of us who have pushed through the hurtful looks and “outsider-ness” in order to raise our children within a faith community are actually rare. Which probably doesn’t help us become any more visible. Afterall, if there’s only one family in a church body with a “special needs” child there’s really no incentive to try to include them — if the numbers are higher then suddenly they become a “ministry opportunity”.
The reality is if we are going to create a welcoming environment for “special needs” families, the families themselves are going to have to come together and make it happen. Unfortunately, we live the intensity of the 24/7 “special needs parenting” lifestyle – special diets, running to different therapies, evaluations, IEPs, doctors, alternative care options, hospital stays, therapists, therapists, therapists, every day is a whirlwind and nighttime doesn’t guarantee sleep. Is it realistic for us to find ways to minister to each other in the midst of all this? But who else can do it like we can? Who else really understands what our lives are like, and who else is able to hear us? We are an invisible, growing statistic. We are numbers, not humans. We are “other” – we are isolated by the nature of what our families are. We are the obvious ones who can reach out to each other.
There are things that faith communities can do to make attendance for special needs families realistic, and most of the time just a little bit of education, a little bit of understanding, is all that people need to be able to welcome “others” into their community. What if there was an area in the church – not a place to isolate and contain, not a place with a negative feel – what if it was a place where sensory stimulus was more controlled? What if it was a positive place where many families with children of different abilities could all sit together? What if there was a basket full of sound cancellers to share – like some parishes have a basket of headscarves to share? What if there was an older couple there, a couple who had navigated the waters of community life with special needs children for years who were willing to give other young families a bit of encouragement? What if our children were recognized for their positive attributes rather than their negative ones? What if our kids could be made so comfortable that they wouldn’t start crying as soon as they realized we were going to church? What if mothers didn’t have to go home crying because someone told them it was their “lack of faith” that was keeping their child the way they are? What if a public meltdown was cause for compassion and understanding being poured out upon parents from their cohorts, rather than a cause for disapproving looks and rude comments that reinforce “outsider” and “insider” status? What if we could all belong in the Family of God?
Because the Truth is — we are all made in the image of God and it should be our goal to grow into His likeness. Our children may not be “normal” – they may have different physical or mental abilities – but they are just as capable of spiritual growth as anyone else if they’re given the opportunity. My boys are not like neurotypical kids – but you know what? They are kind, they are simple hearted, they are compassionate, they are forgiving… they are striving for spiritual growth. What if they hadn’t been given the opportunity to learn to pray? Imagine if they weren’t who they have become? The world would have missed out on them. My life wouldn’t have been enriched just by knowing them… Our children can help us grow in compassion, in kindness, in unconditional love… We have the opportunity to share them with faith communities, and give those communities the opportunity for that kind of spiritual growth if they will only accept us as we are and help us stand beside them. Our kids are not bad – they are different, and their lives are hard – but they are still kids. Maybe there isn’t a “Sunday School” they can go to – maybe “Youth Group” is a nightmare, and “Camp” is the stuff dreams are made of (whether good or bad). But they can belong – we can be part of the community if room is made for us.
We need advocates with people in “spiritual authority” positions – most of us have been hurt enough by someone in spiritual authority that we do not willingly open ourselves up to close contact with them. We need a place within in the community that we can call our own, and we need people who will reach out and let us know that such a place exists. Most likely we won’t believe you… we have become cynical and untrusting… but we might surprise even ourselves and show up some time. And if we are loved there – if our entire family is welcomed – if people smile at us and comment on the loveliness of our children’s eyes – if no one flinches at an excited yell in a pregnant moment – if no one turns and stares at us like we are aliens instead of humans… if we are loved… then we will tell our friends. And they will tell their friends… and we will all get to know the love of Christ in Truth — we will all know what it is to belong.
There’s a lot more that can be said on this subject. These few paragraphs are purely the work of sitting down, typing, and seeing what comes out – there has been no pre-planned outline, there’s been no rhyme or reason… this is all just “heart-talk” – and it’s limited. I’m just me – just Little Nonna – frustrated with the many years I’ve tried to find a place my boys can belong in the Life of the Church. They are loved now, they are accepted as they are, they are respected and appreciated for who they are now — but it’s been a long journey to get here, and most families just don’t bother with the struggle. There are so many other things to struggle over in this life, it’s easy for families to just decide that this particular struggle isn’t worth the pain. Lord have mercy on us all… may the day come when we all know what it is to belong.
Continuing to Remember the Mercies of God:
1731… freshly baked bread – the house smells wonderful
1732… sitting on the porch in the sunshine
1733… the smell of newly growing grass
1743… green, green – everywhere green!
1744… upcoming Chrismations and Baptisms! :)
1745… pajama days
1746… reading aloud to The Philosopher before bed
1747… The Professor up and ready to go for every service we let him go to :)
1748… Facebook community
1749… “date-walks” with my Mister
1750… late night laughter
P.S. The photo at the top of this post is of The Professor and The Philosopher when they were 7 and 4 — where has the time gone?!
Glory to God for all things…
Lord, have mercy…