Companionship: The Missing Piece of the Puzzle for Special Needs Parents

I tend to run in different "circles of friends" than most people that I know in my own town.  I don't attend playgroups, don't go to the homeschooling co-ops, don't participate in the Women's Bible Studies, and don't hang out with the PTA at the elementary school.  I could give reasons about why I don't take part in each of those, but really it would all boil back down to one thing: We have a unique family make-up and our chosen path because of that uniqueness means that these things are not options for us right now.

I could make a much longer list of the things that we don't do because of the path of life we're on.  In fact, I could regularly add something to it that we "used to do" that we will no longer do because of one reason or another.  I don't believe there is a magic button that turns us from social creatures in to isolated people and makes our desires for interaction with people outside of our children and spouse to suddenly turn off.

Instead, I think that the more isolated our lives bring us, the more we need to reach out for connections with people that can understand our journey.  

When it feels like we're "doing life alone" is when we most need a shoulder to lean on, an ear to listen, and a friend to help pick us back up on our feet.  I often struggle with that balance and find that during the most difficult seasons, I not only am walking through fire, but I find myself afraid to reach out to others.  I fear several things.  

1. Burdening them with the weight of my trouble.
2. Rejection, and having them turn me away, worsening the feeling of my troubles.
3. Feeling that I've given them a view of our situation that is all negative, which is not my intention.

When things look pretty bleak, when we feel like we're alone, when we're mourning the things we "can't" do as a family or as an individual, we can't just internalize and move on.  No, we need to do some things to keep OURSELVES healthy.

The first thing I often look is for a compassionate friend that can get it.  Find someone that can share your burdens, understand your struggles, and relate to you because they have been in your shoes.  Ok, I hear you "easier said than done!"  "No one really can understand what I'm going through."  "I don't know anyone like that."  That's when I say look harder.  

I am amazed at the people that God has brought in to my life through online relationships. Most of us with unique family situations don't have connections with people in our own communities that can relate to what we're going through with our family.  I don't know any other families in our town that have a house full of children ages 10 and under that have significant disabilities and some with past trauma.  The blessing is-- I don't have to.

Don't get me wrong, I would love to have someone local that could really relate to us!  Right now, that's not how God has provided that companionship for us, though.

In fact, most of the families that I am involved with who have multiple adopted children with special needs feel some degree of isolation from other families in their communities.  

It is amazing what today's technology can provide to families with unique situations.  Whether a family has 1 or 25 children, whether some or all or none of them are adopted, and no matter how many of them have any amount or variant of special needs, the community of adoptive parents and special needs parents online is a resource like none other.  I have been involved with families experiencing all of the following through FaceBook parent connections:

• Families find companionship through similar unique family make-ups
• Parents experience life with other families at conferences, during vacations or spending holidays together
• Moms locate other moms whose children have the same unique diagnosis as their child
• People share profiles of waiting children with hundreds of families that may be open to raising the child- and kids find families
• Parents relate with others when they feel their troubles are overwhelming and finding they aren't alone
• Moms and dads realize there are people who will reach out to their family in a time of crisis to provide a listening ear, assistance through shared experiences, and even respite for the family in need
• I have seen children whose adoptions need to be disrupted (child goes to a second adoptive family) and the "first family" connects with the new adoptive family and plays a special role in the child's life even as they are unable to meet the child's physical and emotional/social needs
• Foster parents who have a special bond with a child that are able to keep in contact and receive updates on the child and their new family

I am a part of many groups on FaceBook, and each serves a different 'role'.

• Christian Mom's Groups
• Diagnosis specific groups (feeding tubes, Down syndrome, CP)
• General special needs parenting groups
• Special needs adoption groups
• Multiple adopted special needs kids groups

I want to encourage you... that if you are not already connected with other people that can share your burdens, understand your struggles, and relate to you because they have been in your shoes, then keep looking. 

Dig a little more. I don't believe there is a magic button that turns us from social creatures in to isolated people and makes our desires for interaction with people outside of our family to suddenly turn off.  Instead, I think that the more isolated our lives bring us, the more we need to reach out for connections with people that can understand our journey.  

Entitlement

WOAH, no one likes to hear that word!  If you say "entitled" then maybe it's ok.  But entitleMENT seems to put a bit of a spin on it that suggests that somehow it is wrong.  It is a state of mind/descriptor/etc that people shouldn't have.  But somehow to say to someone "you are entitled to it" is still ok.

So, why would I throw out such a word to start off this post?  Because I had a little battle with myself about entitlement today.  Yep, with myself.  Let me tell you about my day today.

At 5:45 my alarm went off and I crawled out of bed after about 5 hours of sleep, wishing I could lay back down.  The day before we spent about 10 hours in the car driving home from a weekend get-away and I had started feeling poorly the last half of that trip home.  By the time we were home, I had to get the kids in bed, three little boys showered in preparation for today's adventures, everyone's medications done, and Michael unpacked the car and cleaned it out as well.  Then we got everything ready for today- clothes out for everyone, medications and feeding pumps and diapers and formulas packed again.

Today at 6:30 we pulled out of our house in two cars with our three younger boys and drove an hour to Orlando to the hospital.  Traffic and road construction had us cutting it close to the wire for arriving on time.  Then we drove in circles for 30 minutes trying to find the entrance that we'd been told to valet park in front of through all of the construction, finally giving up and finding a garage that we were told by a kind man on the side of the road would connect us where we could at least walk to the correct building.  Once inside, we walked the entire length of the hospital then turned and walked the entire width of the hospital.  We got to a desk where we had been escorted to by an RN that was headed a similar direction and was in the parking garage with us, only to be told to retrace our steps for surgeries and go back practically where we had come from but following a different set of hallways once we got halfway.

We walked in to a long room with a door at the end and recliners lining the walls and went up to an empty window at the end sporting the photo of a man whose name was the same as the lady at the first desk had said it would be.  Three staff people went in and out the doors, and we stood there still... 30 minutes late to our appointment.  Finally they said "oh these are the brothers!" and brought us back to be weighed then in to a room prepared for them with three hospital beds.  Then they came in to tell us that things were "running behind" because of some complications that were unexpected with some of the first patients of the day.  Eventually, the first two boys went back to back for procedures and Michael met each one in the PACU to sit with them while they woke up, then Micah was sent back to me in the recovery area just as Wesley was taken back for his procedure, then James and Michael came back out a little while later.  Things were going like clockwork.

Michael and I dressed the boys, gave them clear liquids, and some young girls showed up with wheelchairs ready to escort Michael, James, and Micah to the car to go home.  Wesley's surgery was scheduled to take a little longer.  I was called to sit with him in PACU just as Michael and the little boys were ready to wheel out, so we said our goodbyes and went separate ways.  Another 4 hours later, after things that shouldn't have really been very much different than the first two boys just didn't happen in the same way once we were sent to a different (mixed adults and children due to the later time of day) recovery room... Wesley and I finally got our jailbreak.

I should mention here that I woke up that morning with a sore and swollen throat and took Tylenol which helped tremendously the first half of the day, but quickly wore off as the day wore on.  I was tired, achy, icky feeling, and *I* wanted to go home... and Wesley had been a great patient, but his patience had worn off and he was DONE by the time we convinced the nurse to let us leave.

This brings me to 5:30pm when I walked down the hallway, got on an elevator to the 3rd floor, then walked another two sets of hallways to come to where there was another set of elevators to go to the 6th floor... and saw a restroom.  It sounded like a good stop to make, so Wesley and I turned in to the ladies' bathroom before hitting the elevator.  11 hours since we left home, we were exhausted, and I was, without a doubt, ready to be home.  Not just that, but to get some Tylenol for the aches and fever and to curl up under a blanket and go to SLEEP.  RIGHT. THEN.

That's when the entitlement factor kicked in.  It drove me from "God is good, and by His grace we do what we do" which I had to have said to 10 staff members that asked how in the WORLD we could have 3 little boys with special needs that day.  Up until right when we were leaving, I kept a smile on my face and a kind posture to my words.  Standing in that bathroom, however, I didn't want to think nice thoughts or say nice things.  I was downright frustrated.  I stood and waited.  And waited.  And waited.  The toilet flushed (Wesley screamed).  The sink ran.  The paper towel machine made noise.  All of that happened in the handicap stall.  I looked at the sink next to me, empty.  And the three stalls.  Also empty.  None of which would help me because I needed to use a restroom where Wesley and his wheelchair would fit inside with me.  We waited some more.

Finally, a single woman with her purse thrown over her shoulder came walking out with a bounce in her step.  No, wait.  She didn't even come out.  She opened the door, and asked if she could hold it for me, while standing in the way of me getting the wheelchair in that stall, which would have resulted in her being stuck in the stall WITH us while I used the restroom.  She had no idea.

She had no idea that we had been there, waiting after we left our house 11 1/2 hours prior and with my son that had been through a pretty painful surgery.  Waiting, so we could go get gas, food, and get on the road after feeling like we were held captive for the last 2 1/2 hours of our time after his surgery.  Waiting, knowing that this was the first opportunity in many hours that I had to use the restroom, and likely would be the last opportunity before we came home.

Something in me wanted to say something ugly.  Something to say to her that she could have washed and dried her hands out in the main bathroom instead of taking up the handicap stall longer.  Something to say that there really was no reason for her to be in there in the first place, because she had no disabilities and had no one with her that would require the extra space.  Something that pointed out that there are people that are actually disabled and people escorting them who are being made to wait (in pain) because she wanted to take her leisurely time in the only place that they could go.

Then, God smacked me over the head.  At least, that's the way it felt.  The thoughts that began running through my mind went something like this...

Nothing in your life makes you any better than her.  Nothing she did was wrong.  She may have been inconsiderate, in taking the handicap stall, but there was no reason for her not to enjoy the space and the cleaner restroom (which is often the case) instead of one of the others.  She didn't jump ahead of you and take the only place you could go, she was already in there when you came in.  Your son doesn't need to use the restroom and isn't even upset about waiting (except the toilet flush which has nothing to do with where she chose to use the restroom).  Just because you have a better excuse-- or even a need-- for something special for your child or for yourself because of your child doesn't make you ENTITLED TO IT.

DING DING DING.  I had this creeping sense of entitlement sneak in.  It's the same one that occasionally pops up when people who have handicap tags make snarky comments about all of the elderly people in Florida having handicap placards and how that's why there's never any handicap parking when you need it.  It's the one that sneaks up when there have been accommodations made specifically for people with special needs that, for whatever reason, a person isn't able to utilize when they qualify for it, but it's unavailable because of some other reason-- be it the busyness of a situation, it being used by someone else, or even if the person doesn't qualify in all the categories but still feels they should be... entitled... to it.  I hear it regularly about people who cannot receive medicaid when they could really use it-- but their income isn't quite within the boundaries.  Or SSI for their disabled children, but their family asset base is too high.  I hear it about school services and public park facilities and parking lots, and yes, even restrooms.

What we, as parents of children with special needs, need to do is take a step back from what appears to have been created "for our children" and we feel we have a right to access, and recognize that despite it being made "for them," it does not meant that we are entitled to it.  The perks are great, and sometimes are absolutely necessary for us to be able to access things (such as restrooms for our children), but when something that is "helpful and great and we are thankful for someone providing it" becomes something that "we are supposed to have access to and we get ourselves all messed up over not having it how and when we want it," then... we have taken things too far.  We have entered in to entitlement.  We have begun to sink the ship of gratefulness and begun to build a wall of pride to fall off of.

Do I mean that the idea of accessibility is just a 'nice notion' and not everyone should be welcoming to people that need handicap accessible areas and other such 'conveniences' that make life DOABLE?  No way!  Do I mean that benefits that are available to people with special needs shouldn't be available to them? Not necessarily (if one qualifies within the boundaries of the law).  What I DO mean, is that when others are living life innocently and choose to use the nicer bathroom or the person that doesn't APPEAR to be handicap uses their tag to park closer to the grocery store, or anything else happens which makes it so that what we feel is there FOR US and OUR KIDS is not available to us, then we need to take a few breaths.  Breathe a few prayers.  Refocus on God and on life and on the thankfulness we SHOULD have in everything we do.  Despite our circumstances, despite our lack of sleep, despite our long days of caring for our children and despite our 'natural' tendency to want to react when we have had a day of testing.

Then, we wait that extra 2 minutes for the toilet to flush, the water to turn off, the paper towel dispenser to make noise, and we SMILE and THANK the girl offering to hold open the bathroom stall door for us.  And when she gets trapped inside, well, I suppose that's when she might want to rethink her offer to hold the door next time :)

Our Story

So... I'm awake. It's 1:20am and my mind is spinning. God speaks to me in the darkness and in the quiet, and He uses what He's shown me throughout the day to do that. This weekend Michael and I recognized and celebrated 12 years of marriage and the unique life path that we're on. We spoke of role models throughout the years and mistakes and twists we couldn't have foreseen. We talked of the past and of the future, and how so much is changing... once again. I woke with this all on my mind and sat down with a blank page. This is what came out:

To tell you our story I could start at the end or the beginning, but no matter where I begin, the intricacies of God are so entangled in it that the beginning and the end mesh somewhere in the middle, and the origins of time escape from the picture. God knew where we would be today from when I was born and as time holds no relevance to God, He pieced it together in his all-knowing power. Tomorrow is no surprise either, so when the happenings of three years ago coincide with the dealings of tomorrow it should be of no surprise to us since God is the one that orchestrates it all together. Unlike the orchestral symphony which requires perfect timing, God’s timing expands beyond our limited knowledge of the continuum and rolls instead into the silence that is tomorrow and was yesterday. We can trust just the same that tomorrow we will be in the folds of God’s grace as we did today and yesterday because God holds it all in eternity. So I will tell you our story, but the web that it spins won’t be one of chronology. Instead it will work backward and forward into the silent symphony that God created in us without concern for time. 

One day at a time, we are telling that story. From yesterday to three years ago, to tomorrow, the story continues, and sometimes the future makes the past make sense. :)

10 Simple Ways to Modify Children's Church Activities for Children with Special Needs

Bible Story time: While your 'typical' third grader can listen quietly to a story for 10 minutes and answer questions about what they just heard about, a child with a short attention span, developmental disabilities, or sensory processing difficulties may not be able to listen nor sit still that long.  Here are some ways to teach the Bible lesson to that child without stressing out the child or the volunteers!

1. Make cutouts of the characters glued on to cardboard that the child can hold and manipulate during the story time.  You could also accomplish this with stuffed animals or puppets if they are available for the child to hold.  You might find that a lot of your students would enjoy this!

2. Give the child a 'medium for creativity'.  Ask them to create a character or scene from the story with colored pencil drawings or play dough in an area nearby the other children.  

3. Provide an alternate storytelling experience in an area where the child is not expected to be still or quiet.  Tell the story to him while he jumps on the trampoline or rolls the ball with you. 

4. Create the scene for all of the children using a more dramatic skit, or video allowing interaction from the 'audience' and allowing those who need to 'keep moving' to do so during the skit (in a safe way with supervision, they can walk throughout the room, for example).

5. Give the child a purpose in the storytelling, such as being a character, saying a special phrase whenever it comes up, or holding on to props while not in use.

Songs and Worship: Most children love this higher energy, fun, move around, raise your voices time!  Those very things which are a great draw for many children can be overwhelming for a child with sensory processing difficulties.  

6. Anticipate this activity and provide a fun alternative where children who need to can have a lower-sensory experience.  Stepping out to the hall outside the main room may be a perfect place to hear the music and voices, but not be right in the middle of it all. Encourage hand motions, dancing, and singing, or just listening if that's what the child needs.

Crafts: Every child needs a token to bring home to remember their church lesson by, right?  Those fun creative projects sometimes require more motor planning than the child can do, or are not safe for their developmental level. 

7. Prepare-ahead and provide projects that are partially or totally completed and require only the parts that the child can successfully do on their own.  Then have an activity ready for the children that have finished their craft project.

8. Provide an alternate craft or project that is more developmentally appropriate or safer for the child that correlates with the topic at hand.  Remember: kids like to be the same! Providing a similar but different craft may mean you should consider making this an option to the rest of the kids to choose instead as well!

Games: It's time to follow verbal directions and run to the appropriate part of the room-- last one there is out!  Last one in the game WINS!  So what do we do with the boy in a wheelchair, the child that's deaf, and the little girl that can't understand the game rules?

9. Buddies can be a great way to incorporate kids without them having to fully understand or be able to participate on their own.  So can a little head-start.  "Suzie and Ben, GO!" as Suzie pushes Ben's wheelchair away from the crowd before they all get to run.  Ask a child to volunteer to buddy with a friend and hold hands to run together for those that don't understand the directions or cannot hear them.  Give a little grace so they can enjoy the game too.  

10. Find a special role for your special members.  Needing a very important helper to be the score keeper, to announce "GO!" and to help you decide who was 'out' each time may be a great job for a child that cannot participate fully otherwise. 

There is nothing greater in life but to love and be loved

In the past month we have experienced something special.  Something that we knew existed but had yet to experience for ourselves.  Something which puts so much HOPE in us for the future, and so much JOY in the present.  We have experienced a new kind of ministry.  One that has opened their arms to our family and gone out of their way to make things work, and work WELL, for us.

This church is First Baptist Church of Orlando, and this ministry is their Special Friends ministry, run by Michael Woods.  

Let me share a little more about this situation...  We first approached Michael Woods as we realized we were going to be looking for a new church about 8 weeks or so ago.  When we first spoke, it didn't start with "we want to join your church," or "we are looking for a new permanent place to go to church."  No, it started with "we haven't been to church as a family in several weeks, we are looking for somewhere that is already established that we can 'rest' at, we don't know where we are going or what is happening next, but we need somewhere that our family can worship together soon."  

Mike and I set up for the whole family to go over to meet Michael Woods one afternoon and see the church campus, the special needs room, and for Michael to get an idea of the temperaments of the kids and ask questions, etc while we spent about 20 minutes or so together.  Even knowing that we weren't sure (and still are not) whether this would be a long term solution for our family or not, Michael went out of his way and has made it abundantly clear to us on a regular basis that he has a JOY in serving our family and our children.  There is not a burden that comes with having a large special needs family there.  It's not because this is a huge church or because there are people there with nothing better to do than spend time in special needs ministry.  This is a successful ministry because there is a passionate person running it who truly cares for the children involved, trains the volunteers well so they are not overwhelmed with the classroom, and who takes the time to know the children and families individually.

We are impressed not only with the way that the church special needs ministry has welcomed our family in, but in the support, encouragement, and prayer that they have offered as well.  Even though we are not members.  Even though we are in such a transitionary place in life that we don't know where we may land tomorrow.  Even though we didn't come in offering what we can do for the church.  Even though this church isn't in our neighborhood, not even in our city.  It's an hour drive to get there, but not for a moment will we complain about the time or gas that it takes to get there, because what we have experienced has been something so refreshing that time and money cannot compare.

It is said that the greatest things in life are to love and be loved.  We are experiencing that, and are grateful for that peace and the ability to have a moment to 'rest' each week as Michael and I listen to God's Word, experience musical Worship, and our children are taught the good news of Jesus Christ at the same time.

 

This, my friends, is something special.  And I hope and pray that this special something will be a spark that turns to a flame in The Church.  We pray this is something that we can bring in to whatever ministry God is preparing us for in the future as well, and we are so very thankful to Michael Woods and the volunteers that run the Special Friends ministry at FBC Orlando.

The cycle of thoughts… life, ministry, onward with jobs, and where we are at now!

As many of you know our family has had quite a few changes recently!  After changing jobs at the end of May, the second job turned out to be a bad fit for Michael and for our family.  Trusting that God has a great plan, Michael resigned after 2 weeks in that position, which was one month ago.  Where God has brought us from there has been nothing short of amazing.

Though there are moments that each of us struggle with the idea that we feel like we’re floundering, not ‘settled’ because of being unemployed, and not knowing whether we will be staying here or whether we are being uprooted and moved to somewhere new, we are not disheartened or otherwise depressed in our current situation.

Quite honestly, either way we are open to whatever God has, and both have their positives and negatives.  We love our home and more than just being a good space and that we recently added on to in order for it to be more accessible for all our kids (handicap bathroom), this house has HISTORY.  My parents built it when I was 7 years old and we purchased it from them about 6 years ago.  In addition to that, we have family here and an established history in this town ourselves.  Then again, sometimes change is good.  Here we have experienced the school system for our children with special needs and pulled out from it, we don’t have a local church, and oh, that’s right, no job.  :) Who knows what opportunities there may be for us in another area, or what opportunities we could have for the Lord there?

For several years God has been prompting Michael’s heart and mine to be more involved in personal ministry.  Yes, Michael has worked in the church, but for the last 8 years (or thereabouts) he has worked more in support and administration than in person to person ministry within the church.  During the five years before that, Michael worked in youth ministry in different ways, was licensed and ordained in the Baptist church, and even once he moved in to administration, I continued to work as a children’s minister for about 2 years after that.  When Michael worked in student ministry, I served alongside him as much as possible.  He moved out of that both because of needs within the church that he could fulfill and because of our family’s need to ‘figure out parenting’, which can sometimes be a little difficult when you have junior high and high schoolers at your house all the time! :).  Michael pursued a master’s degree in an area that interested him and where he is very strong- Leadership- and now has an even better understanding of a subject that many church leaders struggle with.  

When I was a children’s minister, Michael served with me and my students (and children’s ministry was a much more scheduled time-frame!).  Each of us has always been a large part of the other’s personal ministry and we have always enjoyed working together.  It has been 6 years since I was in children’s ministry, and Michael continued to serve with annual retreats, summer camp, and occasional weekly events here and there up until just recently.  In fact, this is the first year in many that he hasn’t taught classes during summer camp (because it was one of the two weeks he was working for the other company).

A few years ago we felt prompted to begin working with students again in some capacity, and God brought that opportunity to us through personal mentoring.  We absolutely LOVE having some young people that we get to ‘hang out’ with, share our family with, hear about their lives, and have just a little input in to them, however small that may be.  We consider them GREAT FRIENDS and are thankful to God and them for that opportunity. 

It’s really no big surprise, then, that we feel strongly that God is calling Michael back in to personal ministry!  We don’t yet know what that will look like, or where it will be, but the desire to work with children or students on a regular basis, teaching, serving, setting up regular events, investing in their lives, inviting them in to ours, introducing them to our wonderful LOVING God, and walking beside them and their families as they walk out this Faith in everyday life.  In addition to that, God has given us this overwhelming passion for special needs, and in the capacity of a children/family/student pastoral role, it would be a wonderful opportunity for us as a family to reach out to others in whatever community we may be a part of in order to incorporate those families with children and people with special needs to bring them in to the Body of Christ!

Between the passion that both Michael and I have for children and youth, the background I have with an elementary degree and working in children’s ministry, our experiences starting 2 new ministries within our previous church, and Michael’s business and organizational training, along with the unique family God has given us and the current ages of our children, we look forward with anticipation and hope that we will find that ‘good fit’ in a church working with children, students, and families.

We are grateful for this ‘renewed vision’ and direction, and as we have been praying over jobs this last month, this feels like the “right place to land.”  Will we definitely seek only this employment? No.  Maybe God has something different first.  Many times in the past God has blessed us with a vision and a ‘wait’ at the same time.  We are thankful for God’s timing and will wait patiently on Him… as we pursue that which we feel He has called us to at the same time :)!

My Choice

If I could choose today to live my life any way I wanted to, without any concerns for what others think, without any fear of financial burdens, and without any past or future concerns to bog me down, this is what I would do…

I’d give every day from the time I wake until the time I sleep to serving God and loving others.

I’d find ways to bless instead of curse.

I’d pour in to the lives of the younger generation of girls and boys that are trying to find their way.

I’d look out for those that society looks down on, and make sure they know that they are loved… No, adored.

I’d love my family unconditionally, grow it by God’s calling, and love and serve my husband foremost, submitting to him as I do to Christ.

I’d show my children through life, word, and deed, what it means to live for something greater than themselves.

I’d start each day in prayer and end each day in prayer, and spend the day in constant conversation with God.

Then, I wonder… which of those things can I not do today?  Which of those things are made impossible by my concerns for what others think, my fear of financial burdens, my past or future concerns?  And why not decide right now that those things, are going to be me?  Right.  Now. 

End of School-- Beginning of School!

Just 4 1/2 days left of school for Kristopher this school year, and our home school year is going to end at the same time!  WOW, it has gone by quickly!!

As we finish off one year, we are getting ready to immediately jump in to another school year here at home, though.  Last year I started homeschooling for the current year in June.  I really liked doing it that way!!  This year we'll take a month off and in mid-June we'll start our 2013-2014 school year here at "Cornish University" (haha, no, it's not an actual incorporated school, just what I jokingly call our household school!  I'm the President and Educator, WOOT!!).

I'm excited to say that next year we'll be stretching our homeschool to include one more member of the family!  Kristopher will be joining us here at home for 4th grade!  He and I were talking in the car this morning and he's looking forward to the self-paced movement of homeschooling but will definitely miss all of the wonderful friends he's made in school this year.  He looks forward to staying in touch with them and will continue in the out of school activities that he's built wonderful relationships through (youth groups and karate!).  He'll be using the Accelerated Christian Education curriculum and is going through the testing process right now so that we start right where he is rather than ahead or behind where he needs to be.  It's been exciting to see how he's testing already, and we are glad for him to have this individualized path for school this year.  It's also a very independent-based learning which he does WELL with, and it will allow the flexibility we will all need to make life work together.

In addition to Kristopher using the ACE program, Brianna and Lynae will be using it for some subjects as well.  Both of the girls were able to take the online (free!) diagnostic testing and I was pleased to see that Brianna has tested through 90% of the first grade skills in math and reading, and that Lynae has as well!  I want to really solidify the skills and go back to work on those that they are missing (neither of the girls is reading well yet) so I plan to start both of them at the beginning of first grade in the ACE program.  Of course, their progress will be much more parent-directed than Kristopher's.  Lynae has informally done Kindergarten and now first grade with me as Brianna has homeschooled through those grades, and though she's turning 4 in September, we're letting her progress at her own pace.  We're regularly asked if she will go to school at some point, and to that we don't know!  She isn't eligible to even attend 4 yr old PreK for another year!

For our other 5 school-aged children, Aleksa and Emma will be 4th graders "by the books" and Wesley will be 2nd grade, James and Micah 1st grade (Brianna is also 2nd grade).  These grade levels mean very little to us, because we are teaching on their developmental levels.

It was asked in a homeschooling group about how to make your own IEP so you have something to measure goals by as you go throughout the year.  Though I don't do this "formally", I do have an informal way of doing it that I'd like to share so others might be able to glean whatever they may be able to off of it to use for themselves.

In determining goals, I  look at what I want my child to accomplish in 1, 3, 5, and 10 years and as an adult. Consider what skills are needed to make those things happen.

For some of my children, my 5-10 year goals include independence in ADL (activities of daily living) and following a "list" of directions. For instance being able to have a list (picture or written, depending on the child's current perceived future goal, though I work on reading with ALL of them, some are more likely to be competent readers than others at this time) of activities for them to do in the morning. Wake up, look at your list. Go to the bathroom, start a timer for 10 minutes and get in the shower, get dressed, make and eat breakfast, put dishes in the dishwasher, take their sheets off their bed and start the washing machine, then start a 30 minute timer to play on the iPad before their day gets moving with whatever is on the schedule for that day.  (Or whatever that day's chore/routine needed to look like.  Following a list allows for change without remembering what happens which day that makes them different!).

This amount of independence I desire for my kids, and I am working on all the "little things" that they can accomplish with it now. I'm working on setting timers and being able to complete a task in that time. Working on toileting, dressing, buttons and snaps and putting on socks and shoes. Working on pouring cereal and milk. Reading, following a list. Doing a task to completion. Coming back to me for a next direction rather than finishing a task and going to do something else. For toileting, once trained, work on the entire process. Tearing toilet paper off the roll, washing hands, following the entire routine without assistance. Showering, prompted steps through the body to wash, which means they know their body parts. Tooth brushing and OT skills to hold firmly and move the hand around to get the toothbrush everywhere...

Then there are academic goals, which for me focus on whole life as well. Counting, recognizing numbers, 1:1 correspondence, skip counting so that eventually we'll get to money. I want them to be able to go in to a store and make purchases off a list and pay for it, knowing how much is within the amount they have and how to do it independently.

I want the kids to be able to and WANT to read for enjoyment, though some of mine are so significantly delayed that I'm not sure if that's realistic. So, in the mean time to teach that, we use Leapfrog TAG books and teach the turning of pages, following the directions of the page turning, and that type of skills that go with reading, so that they can still enjoy this type of activity whether or not they read.

I could go on and on, but I suggest to anyone wanting to set these type of goals for their homeschooler (or to give this type of input in to your child's school IEP!) you look at these types of things YOU want your child to do and work on the things that will eventually get them there. If you want a list of NOW skills, write them as formally or informally as you'd like to. There's also an old book (out of print) that a friend of mine showed me that's called Luke's List. Two books, actually, One is Luke's School List and one is Luke's Life List. Each goes through the developmental steps to attaining final goals and it's a very comprehensive book. I don't know if there's anything more current that lists it out, however developmental milestone lists would be a starting point to know "what naturally comes next" to work on those emerging skills.

We are looking forward to the new school year, the newness of having Kristopher home and beginning new curriculum with some of the kids!

God’s new direction for our family

We have loved being a part of our church for the last 12 years.  At this time the last of our children with special needs have outgrown the nursery services which worked all right for their various needs. We've approached the church leadership about starting a special needs ministry since three of our boys and Emma (who regularly ends up in the hallway half way through church) won't be appropriate to be in children's church (Aleksa we have never tried it with). Leadership has let us know that they are not going to start any ministry for special needs children.

God has made it clear to us that we need to be a part of a church that all of our children have a future in.

They need, right now, to be a part of an appropriate Sunday morning program, and in an environment that our kids with special needs will have the capacity to grow and learn in alongside their typical peers, and where needed, more individually.

We recognize that every person, every child, has a soul and that our children with special needs' souls need to be fed and ministered to just as much as our "typical" children. All of our children need to know that they are of infinite value and worth within God's Kingdom, and in the Church.

Because of this, we are looking for another church to attend as a family.

Due to the nature of Michael's job at the church, he cannot continue to be employed by them if he doesn't maintain active membership. Because of our strong family convictions and the inability for our family to incorporate further in to the church as a family, Michael will be resigning from his position at the church.

We trust that God has a great plan for our family and look forward to where He has us to be. We appreciate your prayers and petitions to the Throne on our behalf. We also appreciate any "earthly" help you may provide if you'd be interested in being a part of this journey and assisting in bringing any potential IT, marketing/graphic design, and business related jobs to our attention. We are willing to relocate if that's God's plan.

Thank you for your prayers, and we walk forward with Hope and Knowledge of a Loving Savior.


Keep reading... http://cornishadoptionjourney.blogspot.com/2013/05/more-thoughts-on-change.html

More thoughts on change

I am publishing this one minute before the post that preceeds it so you will read the previous post first... So the post that explains what this is about is above it on my blog feed. But yes, it is backward if you are reading it on an RSS or email. Hang on. In one minute it will make sense. :)

Let me take a minute to share with you our heart in all of this.  I believe there are four groups of people that will be processing this differently. 

The first group: NON-BELIEVERS.  Those that look at this situation and think “this is why I don’t believe.”  I hope you will realize two things.  1- we don’t follow MAN, we follow GOD.  2- not all men have the same convictions, and the Bible isn’t always 100% clear in everything.  See the 3rd group below for more on that.

The second group: BELIEVERS who think we are crazy.  Yes, we have a large family, adopted kids, special needs kids, and we homeschool.  Any one of those groups leads us to have people that disagree with us.  We are used to it.  We are ok with that.  We are responsible to God and ONLY God, and in that we know there will be plenty of people that disagree with us… even believers :).

The third group:  BELIEVERS who think that there is a problem in the church.  We struggle with this because of our own convictions, and I recognize that many of the people that read this will have similar convictions.  Here is where I am trusting the Lord and knowing that He has great plans in this.  Not everyone’s convictions are the same.  There are some things that are VERY clear in the Bible.  I believe there IS ABSOLUTE TRUTH.  There are also other topics in the Bible that require us to go with the promptings of the Holy Spirit.  Not to stir up trouble, but this would be an example of where people’s convictions differ: Drinking wine.  Jesus performed a miracle to create wine from water.  But then it says not to lend yourself to drunkenness.  Some would say don’t ever drink so there’s not temptation.  Others would say drink and don’t be drunk… it differs.  Churches take a stand on it.  People take a stand on it.  Yet, it isn’t a piece of ABSOLUTE truth.  I believe that this topic falls in to the category of convictions.  I strongly believe, and God is working on my heart to trust Him in it, that the Holy Spirit is the one to CONVICT, and that is absolutely not my job.

The fourth group: BELIEVERS who know that God moves in mysterious ways, and we are following Him.  If this situation had not come about, we would continue to be firmly planted.  Now, we know that God is moving us, without a doubt, in to a new season.

We walk in to this new season with NO BITTERNESS or ANGER or DISLIKE toward our church for their actions.  We are sad, yes.  But that is because of the things that right now feel like losses, not because of the absence of a ‘program’.  It is because of the community that we have been a part of that we are stepping away from due to our own convictions.

I hope and pray that your heart will understand these decisions and that if you struggle with the decisions of our church, the Lord will pierce your heart with understanding and you will recognize that we are following a great and wonderful God and not man.  HE IS SOVERIEGN.  :)

Special Needs in Church

Putting it all in one place...

Here are the four articles I've written on special needs and the church in the last few months :).

The Special Needs Soul (guest posted on Gillian Marchenko's blog)

When God's Gifts Look Like Limitations: My Plea To The Church

When God's Gifts Look Like Limitations PART TWO: My Plea To Families Of Children With Special Needs

When God's Gifts Look Like Limitations PART THREE: From The Families

Post from the past: Emma

Emma is our sweetheart with Down syndrome, Autism, and mild cerebral palsy.  She lived in a Ukrainian orphanage for 5 years after being given up at birth-- simply because she had Down syndrome.  Emma was 5 years old when she came to our home and she weighed only 17 lbs at that time.  She had the same heart defect as our biological daughter, Brianna, had, and because of that defect, we were told in April 2008 that Emma would not be a candidate for surgery due to the pressures in her lungs being so high.  There was very little chance that she could survive the surgery.

Here's the blog post that I wrote on April 11, 2008 about our sweet Emma.  Looking back, I can still feel that raw emotion, but also the spark of HOPE.  On August 4, 2008, Emma had her life saving surgery and on August 8th she came home from the hospital!  Our little miracle girl.  Here's a little post from the past about our Emma...

From April 11, 2008:

     
That little face deserves a second chance... and even a third!
The cardiology appointment went much as we expected yesterday.  Our local cardio agrees with the one that did the cath and says that the surgery could likely be fatal for Emma.  She said she sees the things that were discussed with us and agrees with all the findings.  She then stopped and LOOKED at Emma.  Didn't examine, didn't feel, didn't do anything medical.  She just LOOKED.  And Emma was sitting up on my lap looking right back.
Then she started to talk.  And it wasn't about her heart.  She said that the little girl we brought in there a month ago was spacey.  She didn't flinch at the doctor's touch or react much to anything.  Then the cardio leaned forward and Emma followed her in with her eyes.  They met.
Our cardio is of Indian (India-Indian) heritage and has been doing this for 30 years.  She has a lot of experience and is good at what she does.  She sees past the condition and sees the child.  Next she looked at me and said that God saved this child.  Emma's been through so much already and deserves a chance.  Let's talk about what happens if she doesn't have the repair.
She went on to describe the process of dying that would transpire.  I won't go into detail here but it wasn't a pleasant picture.  No picture of death is pretty, but still...
Our cardiologist has known us for 2 years now.  She's walked us through pre-op and post-op with Brianna.  She encouraged our needs and wants, she advised us, and she treated Brianna well.  Now she was looking at me and telling me the sweet things that many who have followed Emma's journey have said- she's a miracle, she's a blessing, let's get her fixed.
Although the risks related to the surgery are VERY high, there is no 'risk' in the alternative.  It is definitely an ending, a painful and long one that will begin soon.  If Emma is that small percent, if her strong will and God's hand pull her through, she can have a long, happy, healthy life. 
We will meet with the surgeon during his next clinic in Orlando.  He's the hand that held Brianna's heart.  We'll hear his opinion before we go any further.  I don't know what we will do after that.  So much depends on each doctor's input and outlook on her prognosis.  But we continue to stand on the HOPE that He gives us.  Not only that the surgery will happen and be a success, but that God's grace will surround us and will protect Emma no matter what decision is ultimately made for her. 
Pray for our girl, pray for Mike and I as we continue to search through everything and know the way God is leading for Emma.

God is reminding me how little faith we had.

God has been reminding me, today, how little faith we had when we prepared for our first adoption.  He knew that it took a LOT of us to commit to adopting any child from overseas… the expense, the time, the paperwork, and then the UNKNOWN, the health conditions, behavioral trouble… what were we stepping in to?



God knew we wouldn’t decide on our own to adopt a 5 yr old that weighed 17 lbs, needed open heart surgery which may or may not even be possible.  A child that lived her entire life in one crib and didn’t like to be touched or held or even looked at.  A little girl that chewed her hands raw, ate only broth from a bottle, and smelled like… well… death.

Instead He called us over to adoption with the idea of a healthy 5 yr old with Down syndrome that walked, talked some, and was generally in a pretty good disposition.  Our faith was stretched to get through the 5 month process for those ‘minimal’ needs!

God took our faith the size of a mustard seed, and walked us through the process and somehow He grew a TREE.  He brought home the sick little girl of the first description, the healthy little girl of the second description, and in the midst of all of that, added another 3 children through adoption and 2 more through birth! 

God knew our faith was small.  TINY.  Yet, He grew the tree that He had planned anyway!

Now, once again, I think my faith is looking like this:




Yes, that’s an actual mustard seed.

Is the faith of a mustard seed a GREAT faith?  Knowing that BIG things will be done even from its small small start?

Or is the faith of a mustard seed referring to faith the actual SIZE of the mustard seed? Tiny, miniscule, but still enough to make a TREE one day?

No matter how you see it, I want that faith.


The faith that can know that my own existence is miniscule.  My own reach is small.  But I know that I serve a God SO BIG that through Him, the impact can be great.  My faith can be multiplied.  Be used for His purpose.

We have a lot of changes happening in our home and family right now.  A lot of things that I can’t make completely public yet.  I see them as good change.  Through this time we’ve been given a greater vision and a stronger purpose for our family “mission”.  Change is still hard, though.  Just about every area of our lives is being touched by these impending changes, and we need that faith that knows that God is IN this.  God is LEADING this.  God knew this from the beginning.  And most of all, God has a plan for it all that will bring Him glory!!



As you think of our family, please lift us up in prayer.  We ask for God’s discernment, His timing, and His direction. 

((PS: No, we are not adopting again))

Happy World Down Syndrome Day!

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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!!

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.   

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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"
http://cornishadoptionjourney.blogspot.com/2013/01/when-gods-gifts-look-like-limitations.html

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. 

But. 

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: http://cornishadoptionjourney.blogspot.com/2013/02/when-gods-gifts-look-like-limitations_5.html

Written by Meredith Cornish     

https://www.facebook.com/TheCornishFamily 

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.  MeredithCornish@gmail.com