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 :)!