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The 85%

I read a lot about children with special needs.  A LOT.  I read what I can find on mommas with children with special needs.  I re-read the same articles on marriages (surviving) with a child with special needs.  And of course, I read about the siblings.  But now, officially seven years into this, I am merely re-reading the same words over and over.  It is all the skimming the surface.  All recapping "it's stressful".  The stress of the day directs me to which topic I will Google for the day.  As for books, they all skip the surface too or they are the stories that tell of the hardships of the child.

I am tired of going to workshops on special needs.  It is always the same old same old. 

I have read the books that are sad (or mad) from parents living with a SN child.  I'm past that.

I want to read something real.  Cut the crap.  

(This has been brewing for a while.  I want to talk to someone who will be real.  Real.  Not hyped up on special needs superhero steroids.)

I want to talk to someone who doesn't put on the "Oh, I'm fine" face, the "I'm together" act, the "I do more for my child" lecture or the "I love every moment of this miracle" charade.  It's all crap.   No one feels like that all the time.  

I think I hit the brink when I did some research for a presentation for our church recently.  I was stunned.  To think of all the information on the internet, it's unfathomable, but there are a few things you will not find.  Just try it.

Look for articles about children with special needs in the church.  

- It is repetitive.

Dig further into the impact on families with special needs within a church.

-You will cringe.  

Most articles about families not fitting in and their journey to find a church that can handle them and truly want them. 

-OMG!


Take that one step further now.  How do churches support marriages with children with special needs?

- Do you hear the crickets chirping?

Well, actually that is not 100% true that I haven't found any information.  While looking for percentages and data, I did find one number.  And I will be honest, I have no idea if the statistic is accurate or not, but I do know what I witness, so let's go with it.

90% of families with special needs members (not just children) are unchurched!

-repeat:  unchurched.

I did find the age old divorce rate statistic.  You know, that one number (around 85% mark) for marriages with a child with special needs that says marriages will

Fail.

End.

D.i.v.o.r.c.e.

Normally by the time the child with special needs is two....

I believe that number.  I am around enough people "like us" to see the statistic in motion.  But, there does seems to be one exception.  Ivey's classroom has four students.  Four.  All four families are married.  (cheer here)  Which makes me very curious about that 90% statistic.

In my research when I read that 90% of families with children with special needs are unchurched - it never specified the church, denomination or even religious preference for that matter.  I take that to mean these families do not attend church, or maybe do not have a church home, whether they want to go or not.  

By now I hope everyone who ever reads this blog knows that this is not a topic that I get on a soapbox about - ever.  This is just a shocking discovery for me.  

The numbers really bother me.  A lot.  This is a subject so close to my heart.  Why?  Well, simple. We have Ivey.  The effects of which are like a concentric wave in water, ripple after ripple reaching out.

Back to the 90%.   I could not find out if this percentage was limited to Christians. Did it mean any type of religious foundation?  No idea.   Regardless, the number just made me nod my head.  I can so see this being accurate.

What's worse, it is not ironic that the divorce rate stat and the unchurched stat are so similar? 

I probably do not take from this what you might assume.
I don't think these numbers represent a Godly factor.  It is not even close.
No, not at all.
This is a people factor.

I think the numbers represent volumes about families with special needs members.

We are isolated.
  
We are tired.

We are imploding.

And the one foundation that could be and should be in our corner (the church)  is Absent....  nonexistent.  

Basically what I gather from my readings, the reasons are this: The hurdle to make everyone (in the church) feel comfortable around our children STOPS on Sundays (or Saturdays for some).  Mentally we expect it to be tough out in the open world, but a church is supposed to the one place we can go and just 'be'.  Things don't always workout how we imagine or want.   Sometimes the people and places who are supposed to be the most welcoming can be the most barring.  Amazing.

Please don't get defensive.  Just put yourself in another's shoes, our shoes.  A a family with a special needs component does not have the typical church going experience. We are always aware of the stares, disruptions and differences and we spend our time, when there, trying to make sure everyone else is not disrupted.  We miss the lesson.  We take the child out side.  We completely miss the fellowship at that point.  We are hollow.  As my boys would say, my spiritual bucket needs filling. My marriage bucket needs filling.  Most days any bucket would do, please pick one and  fill it.

God gave us big shoes to fill.  We didn't ask for it.  But we need Him and you.  Making a congregation comfortable or wrestling with the lack of accessibility is just too much on the sabbath.  We are exhausted.  Mentally.  

What is missing is the piece of worship that involves relationships, relationships in our lives that reflect our faith.  Whether it be relationships with other individuals, families, or with God or all of the above,  the symbolism - absent.  The worship - dismissed.  The welcoming - ?

The gap increases.

The gap between the families and the church, families with God, families with families, and people with people eventually becomes a trench.   At some point standing on either side of 'the gap', we can't see each other any longer.

In other words, special families have one less beam of support.  Peace, actual real peace, is absent.  Gone.  

Most articles I read were from families with children with autism.  The autism spectrum is growing everyday.  These children are not like the Iveys' of the world, no, these children are mobile, making sounds.  Worshipers just don't like being disturbed during their worship time, so they make it harder for families.  The sounds bother them.  The inability to keep some seated is too distracting.  I could list a whole column from what I read from these families.  The few that I found that correlated to the Iveys' of the world were pretty much the same except insert something about medical equipment or extreme medical issues in there.  Nevertheless,  the family stops being "the problem" and stop attending church, they search for a church that will take them (bounce around), or one parent stays home while the other takes the other siblings.  Great, split the family even more.

These are NOT acceptable options.

Some families are sad.  Some mad.  And most just give up. 

Does this sound wrong to anyone else out there?  Who do we think we are?

What does this say about or to families with children/adults with special needs and their loved ones?

And more importantly, what is this saying about our churches?  

To put it into perspective, a Rector (pastor) spoke at our church recently about special needs/circumstances in churches.  He described a conversation that he had with someone in another church who said to him, "Well, we don't really have people at our church with special needs."  He replied, "That's right, because they can't get in."  

I was researching to do a presentation at our church on the impact of a child like Ivey on the whole family.  Why?  Our congregation has become aware of this problem, as are many churches.  They are not taking it lightly, they are actively in the beginning stages of doing something about it.  We, our family, represented and spoke about the need for the church to move and do something.  Our church hasn't been perfect. But the tides are changing. The winds are blowing.  Our congregation has come together and decided it is time to make the necessary changes right down to the physical structure of the church, which is old, really really old, and unbelievably breathtakingly beautiful.  Churches like ours are always physically beautiful.  But our church has decided that the people on the inside are more beautiful.

Also, some, many, members of our congregation have literally signed up to learn about Ivey and people like her so they can actively be available for families like ours.  I am sure that is somewhat terrifying, but they are ready.   They made the decision that it is one thing to talk about being open armed for anyone who comes wanting to worship,  but it's a whole 'nother ballgame actually opening those doors and arms.  They are doing it.  As for us, the Sirmans', this time we get to be their cheerleaders, telling them that, yes, in fact, they can DO this.   The right people aligned.  That is all it took.  (Sounds all most simple.)  The people are the most important component.   People make a church.

We feel like we have finally come back HOME.  And the perk, we have been able to get there a little more often (not just the Holidays)!  

Hang in there families.  REACH out. REACH in.  Stick with it.  Make them see you for all the miracles you are as individuals, mothers and fathers, husband and wife.  Do this for yourself, not just for your children, but because you married each other, you said vows.  And yes, more than likely your dream for your marriage and family was much different than the reality of now.  It is hard.  Stress is all around. (and not the normal stress)  You must act.  You must fight for each other.  Show up for each other now.  You must go forward together.  You have to.  You promised.   Togetherness is important for our children.  Acting our your faith is necessary.  85% is not an option.  And if the 90% is true at all, then it is time to be responsible for our futures.  85% is not the answer, even when it seems the only thing left.  Nothing is impossible - hard, trying and exhausting, but NOT impossible.  Our families and marriages are worth so much more than someone else's discomfort or irritation.  The family unit needs a place to rest too.  Fill your buckets.

No doubt for us to make it - and be the 15% - we all need a miracle and ray of hope from someone bigger than us.  

g.



Comments

Anonymous said…
I read this, and you are right. It is pathetic really.

In our church is a family with TWO children with autism. Both children are pre-teens and both are very loud.

One day after the service I went up to the mom to say "hi". Her first response was "sorry the boys were being so loud." OH MY GOSH. What have WE said that made her say that?!?!? It floored me and all I could think to say was, "I'm glad you all are here."

I AM glad they are there banging and yelling. Because dang it they are the church too. Why did I NEVER say anything to her before?!?!? I wanted to kick my own behind.

We have GOT TO say something. Because by NOT saying anything, we speak very loudly. My true and deep apologies for keeping my mouth shut. I mean that. It is wrong on so many levels. WRONG.

I am keeping this one anonymous, but am a long time reader who continues to be challenged and to learn from your precious girl.
I have found a church and it's amazing! My son has autism and this has been a HUGE hurdle! We live in Atlanta and started at Passion City Church a few years back. We have 2 young adults who serve on Sunday's (both have siblings with Autism) and they take care of our boy while we worship. Our Pastor, Louie Giglio, has been even commented on a picture that my son drew on Twitter. It took us a long time to get here. We tried many churches and I agree with all you say but there are churches out there. Thank you for posting! You hit the nail on the head!
Anonymous said…
We were the 15% but we are slowly joining the ranks of the 85%. Why? Because it is one more hard thing in a list of hard things. Getting in is difficult. Seating is a nightmare. We sit in chairs (that we go find) along the back wall. Lots of funny looks. I get funny looks in the rest of the world, but I just can't take them at church. Activities aren't accessible. Classmates don't talk to her. Teachers don't get it and don't want to get it. I fight day in and day out to keep her healthy and happy and as pain free as possible. It is easier to find acceptance at the mall or in a public school than it is in our church. We have a very smart staff and enough money for an accessible building if they wanted it that way. They don't. Special needs in our christian school would take too much effort and hurt scores. Special needs in regular classrooms takes too much effort. It hurts. And I think it hurts more every time we are there. Church was a joy. Then church was just a thing to do. Now church is a burden, a task to face and get through with a sigh of relief when it is over. I am tired. Weary. Church only makes it worse at this point. That breaks my heart. You summed it up so well.

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