Thursday, February 21, 2013

What a busy February!

We have had a great February, filled to the brim with all sorts of things!  It's not quite over, but it has been a full month already :).

On Jan 16th Aleksa and Emma went to Hope Haven Down Syndrome Clinic for evaluations in occupational, physical, and speech therapies and an educational evaluation as well.  We got some neat ideas for continuing to build them up in each area and took James on January 30th then Brianna and Micah on February 13th.  One of those things is getting new orthotics for several of the kids (all but Brianna have them currently) and we have appointments for all of those to be made on Monday morning.

On Thursdays we continue to have 10 therapy sessions every week, OT and PT sessions (7 sessions) in the morning and 3 ST sessions in the evening.  Hopefully we'll be adding back in 3 more ST sessions as soon as another therapist is hired! :)

We also have Saturday morning horse therapies every week, and 4 of the kids ride each week.  Our horse therapy location is about to move, so Saturday will start a week with some extra "barn raising" efforts to help them break down then re-settle at their new location.

February 2nd our family walked/ran the Light the Way 5K which is a fundraiser for Park Avenue Christian Academy.  My dad and I switched out between pushing a triple stroller with Brianna, James, and Micah in it, and carrying Delaina.  It was a long 3+ miles, but we made it.  And, my dad is in better shape than I am, I admit it! :)

February 4th Wesley turned 8!! :)

February 5th James and Micah both had ABR testing done at the children's hospital.  They both passed in the normal range, which means I'm back to square one with Micah's hearing difficulties since the brain CAN hear the frequencies (but in a booth he doesn't react at anything below 55 decibels and in 'real functional life' he doesn't appear to hear much of what is said).  We see the ENT again on Monday morning!

February 7th Wesley had an appointment with the physiatrist and was recommended for another round of Botox, which he'll be having done this coming Monday afternoon.

Did you catch all those "Mondays?"  Yes, we have 6 orthotic castings, 2 ENT appointments, and an appointment for Botox injections all on Monday.  Fun stuff. :)  We'll get it all done together though!

February 9th Michael took Brianna, Lynae, and Aleksa to the Father/Daughter Dance and they all had a great time! :)

February 12th James and Delaina both had well visits complete with booster shots.  Delaina's still TINY,  surprised? Not really.  :)

February 15th Kristopher, Brianna, Delaina, and I drove up to southern Alabama for the weekend to enjoy a little get-away.  Wait, the get-away was for me!! :)  Kris and Brianna played with Shelley Bedford's kids and her husband while she and I snuck away for the day on Saturday, then we spent Sunday around their house before driving home on Monday.  We had a nice visit and some much needed down time! :)

February 18th was a special day-of-note!  It was our 5th anniversary of Micah and Emma's adoption!  Hard to believe that it has been 5 years since our court date to finalize their adoption!

February 19th is also a special day, Emma's 10th birthday!  That means that she has now been home for longer than she was in the orphanage :).  For our children that spent time without families, that's a special mark and a day we look forward to for each of them! :) :)

February 20th Wesley saw the orthopedic doctor and was recommended for a lengthening surgery on his hamstring on one leg.  We were told we could wait for 6-12 months even before having it done, but that it will need to be done eventually... Not really great news, but thankful that there is an option to help him!

Today is February 21st, and this morning started with an orthodontic appointment for Kristopher and having spacers put in.  Michael also took James to the pediatrician to have his "finger pricked" because James slammed his ring finger in something and it was swollen beneath the nail.  ICK.  What a way to start the day!

Next week brings a very busy Monday with 9 appointments and Kristopher has another orthodontist appointment to have impressions done to get ready to get an "appliance" placed in a few weeks.

We are continuing to home school six of the kids plus Lynae (who isn't school-age yet but still participates in everything!) and Kristopher is in private school.  I started a new reading curriculum with the kids this week (Thanks Shelley Bedford for the help getting started)! so we'll see how that goes.  I love that we can home school on the go, and our busy days we can still be productive with schooling :).

Then... February will be over!!

Tuesday, February 05, 2013

When God's gifts look like limitations PART THREE: From the families...

The "real world"... responses from parents of children with special needs.  Some who have had wonderful experiences.  Some who are still searching.  Some, who have all but given up.

View the previous posts in this series:
PART ONE: When God's gifts look like limitations: My plea to "The Church"
PART TWO:  When God's gifts look like limitations: My plea to Families with children with special needs

“Before we brought home our kids with special needs, we were very involved with church several nights every week.  We volunteered, we did everything.  Now we can’t even go on Sunday mornings many weeks.  That’s where we have had the least amount of support and the least amount of options to get help.”- SB

“We left a church after 15 years to go to a different denomination with a wonderful special needs ministry. I am so grateful for them. They accept my son just the way he is.” -MM

“I am struggling with this very issue. Our church has nothing in place for special needs. They are more concerned with whether we send in our collection envelopes than whether our child has a positive experience in church. We have actually had parishioners move from the pew when they see our daughter. And now with two children, it's near impossible to attend by myself with both of them. My husband usually works weekends.” -GM

“Our old church went the family integrated route. After being there so long there was no place for us. I wasn't going half the time. I repeatedly asked and got non- answers.  I went to a faith and disability conference in Orlando and saw what the church's attitude should be. I unsubmissively went home and told my husband I was fed up, lol.  Now we all know we did the right thing.” -MM

 “We left our church after bringing our daughter home and haven’t found a home since....churches need to "build it and they (families w kids w SNs) will come!!!! The last place any family wants to feel judged is church and unfortunately many SN families just feel like they don’t belong in church these days “ -CE

 “A church we visited has about 5000 members - and they justified running a special needs nursery for only 3 children who attend! Awesome!   And so rare, especially in the Baptist arena. Yet, I believe if more if our churches offered this - people would come. Think of single moms, etc who want so bad to come to church and simply worship, not contend with stares etc.” -CB

“Our old church tried and a few folks were on board. Unfortunately the plan lacked the pastor's support to get it going. He saw distractions, not kids.” -MM

“How can I stand up in a church to share the testimony of our adoptive family, when our biggest struggle has been the church?” -SB

“We are feeling the effects of this right now at our small church. With 5 girls who have DS, it is becoming an issue and I would love to know what others are doing or how they're making it work, and what churches are doing to address this.”  -KW

“My son has minor issues, but it sure is nice to have an hour or so without having to deal with his issues while I just want to get all the way thru Shout to the Lord without feeling like I am going to shout at my kid.” –DK

“ I was wondering how to address the church. In my mind, I start thinking they are my kids and so it is my problem... It feels hard or not right to say "what are you gonna do so my kids can attend children's church" or whatever...” –KW

“Our church has a special needs program. Each of my kids has an adult "buddy" who volunteers to work with them each Sunday. Some of my kids go to the regular Sunday School with their buddy, some stay with their buddy in a contained classroom. They all learn a Bible lesson. My daughter knows quite a few Bible verses that she recites in sign language. We are immensely blessed by these dedicated individuals who work with our kids. I absolutely could not attend church without this program, and I NEED that time each Sunday-spiritually, physically, mentally, emotionally!” –AB

“We have had a few bumps along the road, but my son has always been welcomed at our church. However; children with greater needs are not as welcome unless they go to the "special friends" class. Unfortunately, there is not an inclusive atmosphere overall, but this is changing. We have started a moms group that is open to the community, and we are working to try to get a buddy system going. There is so much room for improvement in churches. I think people are willing, but don't want them to be the ones that may be "bothered." I have been researching a lot to see how things can be changed, and I do believe we will keep improving. Unfortunately, the church is nothing more than "people" and some of them are set in their ways and resistant to change. At our church, we know that with the moms group, we will have more children come, and we are working to be ready- just admittedly not fast enough for any of us.” –KG

“What I need most is people to be non-judgemental and non-frightened of our son and his needs. So far, while he's been young, that's not been a problem. When he gets physically larger, it will be harder.” –RD

“The church I attend has a WONDERFUL inclusion team and ministry! We take the children, one-on-one into their classrooms with their peers and help them participate in the activities! It is SO much fun to be a Buddy! I wish more churches had this kind of program. The parents drop off and pick up the child from the inclusion room. The inclusion room is set up as a safe haven for the kids if they get overwhelmed and need to go back to a quiet place (we have a swing and an adaptive trike and a tent and coloring pages and a computer and many sensory buckets...). Thew parents can go and enjoy service knowing their child is learning and enjoying their class too, and they are in capable hands. Most (but not all, I have no professional credentials yet) of the Buddies are sp.ed teachers, BD teachers, OTs and PTs. The children have their own Buddy, and as much as possible, the same Buddy goes with them every Sunday.
The first director used to go to other churches and speak about the importance of inclusion and acceptance in the Church, and how they could start a ministry of their own. She no longer is the director, but is still a Buddy.” –CL

“I still remember well the sense of betrayal I felt (20 years ago) when faced with the lack of acceptance, love and support at the one place I had most expected it.”—AV

“I have been struggling with this exact thing for YEARS. I don't need a sign language interpreter, or a wheelchair ramp, although I am grateful for them, for those who need them. My family's real needs always seem to fall outside the box, and I really feel we are alone here, underserved and forgotten, most of the time (although I hope I don't sound like I am complaining about our life, because I most definitely am NOT). ” –MR

“Special needs ministry is desperately needed in so many cities and towns. As I described to a friend the other day, it's the lack of my spouse and I being "fed" spiritually, b/c we are so busy attending the need of our (one) child. .. Church should be the first place to find sanctuary with our families. Instead, most become another struggle.” –KP

These quotes have been used with permission.

This post may be copied in its entirety.  Please do not edit the content if copying this post.   Please e-mail Meredith before publishing in any format other than social media, FaceBook, blogs.  Thank you.

Saturday, February 02, 2013

When God's gifts look like limitations PART TWO: My plea to Families of children with special needs

Last week as I typed out my plea to the church about incorporating families with members with special needs in to the congregation, providing for their needs, and finding ways to draw those families in to fellowship I had NO IDEA how big of a response it would receive.  I am amazed at both the outpouring of stories I’ve heard from special needs families and by the churches that have stepped up to say “come here!” because they ARE doing what I wrote about. In three days that post has been viewed over 3,000 times and in over ten countries.  In addition to the success stories, though, I’ve heard stories of people experiencing exactly what was written… that they’ve tried to go to church and they no longer are able to attend because of their child with special needs. 

As I opened my email I was brought to tears as I learned of the burdens so many families are carrying.  So many families have been hurt and haven’t tried to go back to a church because there just isn’t a place for their child or family member with special needs in that community.

There’s another thing, though, that caught my eye.  It was the number of families that said “I tried, but I didn’t go back.”  Sometimes it was because someone was rude to them.  Sometimes it was because they felt out of place.  Sometimes it was simply because “it didn’t work.”

See the first post here: When God's gifts look like limitations: My plea to "The Church"

When God’s gifts look like limitations: My cry to the families with members with special needs

Let me lay this out at your feet: I don’t know your situation.  I don’t know your personal burden or the struggles you’ve faced.  I won’t pretend to understand the uniqueness of your situation because reality is this… everyone is different.  I won’t write here how you need to be, or what you need to change in order to be able to incorporate in to the Body of Christ that is “The Church” and the established systems that they have because we all know that it would be pointless.

If you aren’t attending a church because you have a child that cannot attend and because there is not a church that has an appropriate accommodation for your child to participate in so that you can attend, then there is no use in me writing to you to share my views on inclusion in the church or how it is supposed to look.

We all know that what we hoped would be and what life really looks like can sometimes be a stark contrast, even when we LOVE the life that we are living and genuinely would not change it for anything.  We know we can see our own GIFTS from God as LIMITATIONS in what we can do in life sometimes.

More than anything, as a parent of children with special needs myself, I can share a few things about what it means to me to be different, what it means to want something for yourself and your child but know that it is unreasonable, and what it means to be rejected. 

Here, my friends, is where I really want you to perk your ears up for just one minute, though, so I can share with you the positive message that I believe is being given to us through all of this.

We are not a burden.  Yes, you read that right.  We are not a burden.  YOU are not a burden.  YOUR CHILD is not a burden. 

The only burden there is in your family and mine is the burden of CARE that we, as parents, place on our shoulders.  We often accept the “self talk” that says we need to bear our own troubles.  We don’t want to be “that family” that asks for others to go out of their way for us.  We don’t want to be known as “the family with kids with special needs.”  We don’t want others talking about us, discussing our children.  

Before I gave birth to my daughter with special needs I was a children’s minister at our church for several years and up until she was a year old.  I hadn’t been dunked under water and held there until I figured out how to swim… YET.  Now that I’ve been thoroughly immersed in the special needs community for seven years, I see and understand the needs that lay within it.  Up until now, though, I haven’t recognized the need in my community for special needs families.  In all honesty, I didn’t see “people like me” in the church, and I didn’t really know why.  I didn’t even really think about it. 

Even the first 6 years of my daughter’s life I didn’t see the need, or hear it talked about.  And in reality, it wasn’t her that opened my eyes to the need.  Brianna goes to children’s church unaccompanied and is well accepted within the congregation.  If I had only Brianna in my family I might still have missed the boat.  I might not have seen what God wanted to open my eyes to.  What a blessing that God blessed us with five more children with special needs through adoption.  It is actually through the uniqueness of our home situation that I have had my eyes so very well opened to the need within my own family and as I researched to find an answer for myself and my community, I found the need throughout the greater church as well.

You see, I have not one, but six children with special needs.  Not to exclude them, I also have three ‘typically developing’ children as well.  My seven year old, Brianna, is fully integrated.  My two ten year olds, my eight year old, and my two six year olds are not as easy to “fit” in to what our church has available.

Let me share with you about my children.  Chances are good that you might find a piece of your own child within the differences my children represent.  I hope that our experiences might help you to know where we are in church, and maybe give you, as a family with a child with special needs, that hope and encouragement to press forward as well.

Aleksa is 10 years old.  She has Down syndrome and attachment and behavior difficulties.  Right now she stays with my husband and I during church services because she can’t be left with unfamiliar adults.  There are a lot of “little boundaries” with Aleksa and as soon as someone allows her to break one or two of them (that they may not even know about) then there’s really no bringing her back in. 

Emma is also 10 years old. She has Down syndrome, autism, and mild cerebral palsy.  Emma is nonverbal but understands sign language.  She walks, but not well or for long periods of time, since she only began walking at 8 ½ years old.  Emma has three buddies that rotate attending services with her once each month.  The fourth week, or if any of the buddies aren’t able to attend on their week, Emma comes to church with us.  When she goes to children’s church, she often doesn’t make it through the service and her buddy ends up walking the hallways with her until church gets out.

Wesley is 8 years old and has spastic quadriplegic cerebral palsy.  He is also legally blind, nonverbal, incontinent, and uses a wheelchair.  At the moment he’s attending children’s church in the nursery with our typically developing 3 year old daughter in the 2-3 year old class.  We decided to put him in this class for several reasons including separating him from his two brothers with special needs (in the 4 yr old and kindergarten classes) and because our daughter enjoys him and is a great ‘voice’ and ‘hands’ for him at times.   He is in first grade, however he wouldn’t handle our children’s programming with all of the lights and sounds that is in place for older kids.

James is 6 years old and has Down syndrome as well as sensory processing difficulties and ADHD.  He, too, is nonverbal and incontinent.  He goes to our 4 year old class in the church nursery and usually does pretty well.  He occasionally has “fits” where he has to be removed from the classroom, however some of the nursery staff has been able to take him out and give him some redirection.  We are called out of the church service on occasion for James, and more as he is getting older.

Micah is also 6 years old.  He has Down syndrome and is hearing impaired.  He communicates basic needs using sign language.  Micah is in kindergarten and attends his age-appropriate classroom.  A friend that is a young teen helps in Micah’s class when he can.  On weeks that there’s not an extra helper, we often bring Micah to church with us. Even with his helper, we are frequently called out of church for Micah as he acts up as well.

In case you’re counting… our 6 month old still behaves well in service and doesn’t do great with separation, so she sits in church with us too.  Add Aleksa, sometimes Emma, and sometimes Micah that sit in church with us, and getting called out for James or if Micah attended children’s church, then for him too… and you can probably picture what our Sundays look like over any period of time.

We love our children.  I would NEVER look at them as a burden, and I think that the idea that someone else might consider them as such is one of the reasons that I might not want to push for anything special to be provided for them.  Sure, I wish people WANTED to, but if someone doesn’t approach me and say “I want to do this…” then I see my asking as a weakness. 

In me.  In my family.  In my child.  It’s opening up to the possibility of rejection. 

Asking for help makes me feel like someone else may consider me, my children, my family, a burden.  It opens me up to feeling that I’m perpetuating the myth that because our family is different, it is somehow less.  It reinforces that, as an adoptive parent, we “chose” this, and we need to live with it.  When my family dynamic is one where people assume that I must always need help, and my situation must be so hard… that I am somehow bearing some huge burden... that I must have entered in to sainthood to have the family I do.  That they could “never do what I do”.  I get tired.  And saddened.  So I don’t open up.

You know.  You’ve heard it too.  As a parent of a child, or many, with special needs, you’ve been in those shoes.  You recognize that the person that says “I could never do that” isn’t the person you want to sit in Sunday school with your child, because you know they just don’t GET it.  They don’t understand.  You know that your family is your first priority and therefore as a parent of a child that cannot talk, or express themselves clearly, or walk, or that isn’t toilet trained at an older age, or one that cannot hear, cannot see, or who can’t regulate their sensory system and goes off the handle… that YOU need to be there for that child at all times.  In all situations.  And no one else CAN do it.

That very thought is the one I want to speak to the most.  We are right.  No one else can do what we do.  No one else can be the parent to our children and love them like we do.  No one else KNOWS our children like us. 


For one hour.  One day a week.  Someone else CAN show our child unconditional love while we step out the door, walk down the hall, and sit in the sanctuary with the Body of Believers.  Someone else CAN help them play, help them see, help them explore.  Someone else CAN tell them Bible stories, hold their hand, and even reassure their fears.

And one hour. One day a week.  We can stand up, close our eyes, lift our hands, and praise our Lord without distractions.  We can release the burdens of our day, our fears of a thousand tomorrows, and our anxieties from a thousand yesterdays.

But we, as parents of children with special needs, need.  We need to open up.  We need to allow ourselves (not our children… ourselves) to be vulnerable. 

If we silently bury our head, as we often get pretty good at while dealing with some of the many other more complicated parts of parenting a child with special needs, then the church can’t hear and doesn’t know the need.

WE, as families that include children with special needs, need to OPEN UP!  We need to be willing to speak our needs, especially when we’re asked.  We need to be willing to listen to ideas of others, willing to share what we think will work for our children, and willing to talk to people that might not “get it” but that WANT to.  We need to open up our “bubble” and let people in. 

Let’s put it out there.  Let’s say “we need you.”  Let’s be teachable, and be flexible, and let’s let others in to our “fold” so that they can know how to best minister to our family.  The longer we stay locked up, tight lipped and don’t ask for help, the longer it will be for the church to ‘see’ us.

My cry to the families of children with special needs is this:  OPEN up.  SPEAK your needs.  SHARE your desires.  HELP get things moving.  ALLOW your hopes to be known.  SHARE your fears.  BELIEVE that God can do it.  TRY what’s offered.  RELEASE your burdens.  EMBRACE community.  LOOK to God.

Most of all?  BE WILLING TO TRY.  Because if WE don’t try… how can we expect there to be a change?

Read part 3:

Written by Meredith Cornish     

This post may be copied in its entirety.  Please do not edit the content if copying this post.   Please e-mail Meredith before publishing in any format other than social media, FaceBook, blogs.  Thank you.