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.   

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

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

When God’s gifts look like limitations: My plea to “The Church”

Yesterday the title of this post hit me smack in the face.  I posted on FaceBook and said "I want to do a Bible study about When God's gifts look like limitations: Exploring the Church, God's Word, and where I fit in as a parent of a child with special needs.  Now someone needs to WRITE it!"  Since writing that post, it was suggested that I need to do just that and write a Bible study.

Although I appreciate the vigor and excitement that others have over the prospect of something like that being written, I recognize and greatly respect the process that a Bible study is written with, and I don't feel called nor equipped to be the author of any study right now.  More than anything, right now I NEED a study.  I need to be fed and I'm not in a place to be of spiritual leadership to others that are in the same boat as I am and who have been floating out here even longer than I have as a parent of a child with special needs.

In the last 6 months I've asked a lot of people a lot of tough questions.  I've drawn some difficult conclusions, made up plans of action, and set up meetings within my own community of faith to see what our answer is to this very post.

I am writing this to "the church," an ambiguous body that I've addressed publicly several times over the past months.  "The church" isn't my own church or believers in our denomination.  It isn't people in our town or even our own state.  "The church" is every organized body of believers in Jesus that consider themselves a part of the greater Body of Christ.  If that includes you and your own community of believers, then this plea is for you as well.

When God’s gifts look like limitations: My plea to “The Church”

This is from Me.  Me, is a parent of children.  Blessings.  Children with special needs.  "Me" may be You, if you fit in that category.  This is to The Church.  The Church is a body of believers.  Christians.  People of like faith.  "The Church" may be You, if you fit in that category.

A child is a blessing.  A gift from God.  There’s never any question that every child is a gift, even when the child has special needs.  Whether it’s a developmental delay, a physical difference, blindness or deafness, or a sensory integration issue, the child is still a special blessing from God.

When you parent a child with special needs, the special gift that they are can also feel like a limitation.  There can be differences in how a parent deals with their day to day routines, schooling, and even trips to the grocery store or planning family days together. 

The uniqueness of raising a child with special needs has been described by many as “normal to me” therefore not so different from what someone else may experience.  By some, however, it is described as “a difference that limits my everyday interactions,” “a daily struggle,” or “a reminder that my family is a ministry within my own home.”   Tough revelations, but most parents can relate to those struggles regardless of whether their child has extra challenges presented by special needs or not.

Where the church is concerned, however, there is a different dynamic among families with members with special needs.  There are a few who are part of churches with successfully implemented programs designed to integrate, accept, and educate among the special needs population.  Unfortunately, churches implementing these types of programs are not very easy to come by.  A majority of parents with children with special needs fall in to one of two other camps.  Either they struggle week by week to “make things work” for their child with special needs, or they have stopped going to church altogether because they cannot attend as a family and do not feel accepted because of their special needs child.

There are churches on every corner in my hometown.  Yet there isn’t a single ministry that our community would point to as a church with a special needs program for children.  In speaking with parents of children with special needs in our town, most just don’t attend.  The few that attend a church have usually found their own solutions such as asking a friend of the family or a teen that they know and trust to stay with their child in the children’s program during church.  Sometimes this works, sometimes it doesn’t.  Others have their child sit with them in the adult service and leave if they are being disruptive, or they try to leave their child without support in the children’s programming but are frequently called out of the service to come and get them.  A few leave their child at home with one parent or a sibling and the family doesn’t attempt to worship all together.

Our town is not a unique in its lack of special needs support.  Most communities face the same challenges, and special needs church support is often only found in larger cities even though smaller towns have large populations of children with special needs. 

In 2008 a US survey* found that 20% of families with children have a child with some sort of special needs.  The increased rate of autism diagnosis may have heightened that percentage even since that survey was done.  If at least one out of every five families has a child with diagnosed special needs, then is the church truly at risk of losing twenty percent of the population from being able to attend services effectively by not providing for the needs of those families?

If ministry begins at home, and families that have been in the church for years suddenly find their first ministry- their family- is unable to participate in church, then has the church lost even those who were believers before their child outgrew what the church could offer in terms of their child with special needs? 

Has the church, without intending to, said to these families “you are answering God’s call on your life by raising your child with special needs, so good luck with that, because you can no longer attend our church.”

I know that the pastoral and executive leaders that are known to me personally wouldn’t dream of actually saying that, but by their inaction, they say just that to the community of families affected by a person with special needs.  There is not an intentional discouragement from including these families in the fellowship of believers by pastors and congregations, however the lack of intentional inclusion doesn’t leave these families with many options for participation.

My cry to the church is this: SEE the people with disabilities.  ASK yourself whether they can comfortably attend your worship service.  RECOGNIZE that their needs may differ from other families.  TALK to them about how you can serve their entire family.  PLAN programming that can accommodate children of varying needs so their family can join in the church worship and community.  ACCEPT them in to fellowship.  EDUCATE the church body to bring awareness as well as comfort to the congregation.  WELCOME new families in to the church!

There’s an unreached population.  One that quietly slips away from church at a time when they need the church body the most.  Those are the families including people with special needs.  They find themselves unable to attend worship services, feeling rejected by the church, and at a time in their own lives when they often need the community of the church the most.

That is my plea to the church.  Will the church hear the call?  Will they answer?



READ Part TWO: When God's Gifts look like limitations: My plea to Families of children with special needs
http://cornishadoptionjourney.blogspot.com/2013/02/when-gods-gifts-look-like-limitations.html

Written by Meredith Cornish     
https://www.facebook.com/TheCornishFamily

* "The survey by the Health Resources and Services Administration, part of the U.S. Department of Health and Human Services, found 10.2 million U.S. children in the have special healthcare needs, or 14 percent of all U.S. children. More than one-fifth of U.S. households with children have at least one child with special needs."  Published March 2008.

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

This week (and a Happy Birthday! :) )

It's been a busy place around here!  During James' two day adventure at the hospital on Friday and Saturday, Michael took on the other 7 kids on the homefront and even made it out to horse therapy on Saturday morning!  Sunday we all got up and going then realized that church was early and it was a combined (aka there would be limited seating) service.  We had everyone up and dressed for church before realizing it was also a weekend with no elementary age childcare.  Let's see... James was already staying with us since he'd just been in the hospital, Aleksa always sits with us, Delaina always sits with us.  Then add on Emma, Kristopher, and Brianna without childcare and we would have a busy group!

We went anyway.  :)

Sunday afternoon Michael started on his project... build-a-pantry.  He finished it on New Year's Day and it is WONDERFUL! :)  A 4' x 2' pantry that extends up to the 10' ceiling.  Exactly what we needed for our family's needs and it looks great in the laundry room.

We invited a friend over for New Year's Eve which then turned in to three couples coming over including our friends, my parents and sister and brother-in-law.  We had fun just hanging out and that good ole midnight toast (minus the bottle of alcohol free 'champagne' which someone happened to break the neck off of and send glass shards flying...)!

Wednesday flew by as Michael returned to work and I attempted to tackle our "closet room" to attempt to make some better arrangements in there that maybe... just maybe... we (I) can keep up with better for 8 of the kids' clothes.  That, and actually caring for the 9 children, which is of course more important and made the task take allllll day long!

Thursday was therapy day, which would be today!  2 1/2 hours of OT and PT rotations for 5 of the kids (James had this week off) and Kristopher and Lynae were in tow again since their school isn't back in session until next week.  Plus Delaina, of course, which equals 9 little people, and a lot of 'busy' in the gym room at our therapy center!  Then tonight our speech therapist came out to the house to work with three more kids and I disappeared for an hour, leaving Michael with all 9 kids, quite possibly for the first time while they were all awake... though he may have kept them that I don't recall.

I took off to the shooting range!  It was my first time firing... or even holding... a gun... or even a bb gun for that matter... :)  I shot a 9mm and did pretty ok if I do say so myself :)  I hit the 'target paper' every time, got ONE bullet on the "outer body", maybe 8 or so on the inner torso, and every other bullet was straight on the target.  That was one dead piece of paper, as a friend put it!

This afternoon I scheduled James' g-tube revision to put in his Mic-key button, and surprise surprise... it will be tomorrow!  Mike will be taking him for that since it can be difficult to juggle the baby and James, and Mike probably prefers to take 1 child to the hospital rather than keep 7 at home again! :)  I'm sure James will do fine, and it will be nice for ALL of us to have the low-profile button for James since he's constantly flapping it, pulling on it, having it dangle, etc.  The mic-key is much more manageable and will give him more 'freedom'.

Saturday is horseback lessons again, for the boys this week, and then our last Christmas celebration, this time with my siblings.

I can't leave off one of the most important parts of the week, though, and that is sweet Brianna's 7th birthday today!!  It's hard to believe that she is seven already!  I'm sure I say it every year, but wow, how her birth has changed our lives so much, and for the better!  We are so grateful for a wonderful medical team that kept both she and I safe and made some tough calls through her emergency delivery, and for our pediatricians that kept searching to get answers about what was 'going on' with her.

We didn't know that Brianna was going to be born with Down syndrome, and even after her birth we didn't have any indication that she had Ds.  It wasn't until she was 5 weeks old that doctors began to suggest that they had been seeking out answers for several weeks and wanted to run more diagnostic testing to 'rule out' any chromosomal abnormalities.  In fact, they told us they were considering a different issue pertaining to chromosomes.  When Brianna was 8 weeks old we got the phone call to say "come to the pediatrician's office now" during their lunch break and we were brought in to a room and told "there's a problem with Brianna."  Then, as they told us that she didn't have the condition we were originally told they were considering, but actually had Down syndrome, our hearts' burdens LIFTED and we were grateful that God had gifted us this little baby girl with a condition that to us... was nothing bad :).  Of course we also were told to go straight to the hospital because she could have a heart condition, and two days later that fear was confirmed when we learned that she had a major defect in her heart and would need open heart surgery... But none of that was a part of her birth story.

Brianna is such a beautiful gift to us, and her life gave us the ability to say 'yes' to more children who we may or may not have felt the same burden for if it wasn't for her.  Our lives could have been very different, but I wouldn't want to have it any other way.  What a blessing it is to have each of our children, and to celebrate the joy of Brianna's birthday today! :)

James’ Seizures

James had quite the adventure the last two days, so here’s my way of documenting it for myself, and just for kicks you get to read about it too… If you really want all the details of this little 48 hour ‘adventure.’

On Thursday James began a new medication prescribed by his neurologist.  We were waiting until after the holidays to start him so that we would be in our routine and not off doing other things and we would know if it was really helping him or not.  The medication is one used to help kids with developmental delays and ADHD to be able to better focus and have more “control” over impulses.  It’s the same medication that Aleksa has had GREAT success on.

Thursday he did great!  In the evening he was tired, which is unusual, but that was a great effect of the meds if it was the meds that caused it.  Friday morning he was SLEEPING at 7 when I got everyone up.  James is NEVER asleep.  We never know how much sleep James actually gets because he wakes so frequently at night (he has a special needs covering on his bed so he can’t roam the house or hurt himself).  Our guess was that he likely woke up most of the night after the med wore off and then was back asleep in the morning.

We got James up, he toileted as usual, got breakfast and was pretty sleepy, but generally did fine.  He ate only about 1/2 of his breakfast, but James goes in to moods of eating and not eating, so it wasn’t anything unusual.  He got down and played with the other kids, got in trouble, was a generally ‘normal’ morning for him.

Around 11am I called the kids in to the main part of the house out of the play room (a converted porch that runs the entire length of the back of the house) since Delaina was down for a nap in an adjoining room and they were yelling while playing.  James walked in, tripped over his own feet, didn’t look down while walking and seemed to not be paying attention to the toys he was needing to navigate past. 

I called him over to the kitchen table since he seemed ‘off’ and he climbed up in his chair and sat.  He seemed to not be focusing well so I was keeping an eye on him, noticing that he didn’t seem to be moving his eyes within his eye socket, just looking out of the tops of them.  I continued making lunch, but when I got him his cup to let him start drinking, he picked it up without grasping it very hard and dropped it.  I asked him to give me 5, and he took 3 times of me requesting it before he lifted his hand in a half-hearted attempt.

I was concerned, but still he seemed to just be a little out of it.  He’d woken up sleepy still, maybe he was still tired?  Not so much.  He then went from ‘groggy’ seeming, to picking his cup up and drooling the liquid out of his mouth.  He started slumping over in his chair.  I noticed that no matter what I tried, he wouldn’t move his eyes in his eye sockets. 

Then, I called Mike and asked him to come home ASAP while I abandoned “making lunch” and instead stared at James and started pulling together his medications, feeding pump and supplies, clothes for Delaina, and diapers for both kids.  We were leaving for the ER ASAP.  As soon as Michael came home he grabbed the rest of our things together and got the car seats and strollers set up for me to go and I got myself ready.  In that time James went from slouching in the chair and drooling to falling completely out of the chair and not being able to support himself sitting.  The idea of calling an ambulance only flashed through my mind for a moment before I considered that our hospital that it would take us to didn’t have any pediatric specialists and we ultimately needed to be at the children’s hospital almost an hour away.

We talked only a minute, but considering that James was breathing and not actively seizing (though it sure looked like he was having seizures…), we decided the drive of 45 minutes west would be more helpful than 25 minutes north.  Off Delaina, James, and I went.

At the hospital we valet checked the car and went in through the emergency room.  When the people in front of us finished signing in, I was holding James and sat where I was asked to.  He promptly threw up next to the registration woman’s shoe.  She asked “so he’s throwing up?” and I said no, that’s the first time, but I think he’s having seizures.  She looked at him as his eyes rolled back up in his head and they skipped the paperwork and brought him back to triage.  He threw up again in triage but was weighed and they grabbed his medicine bag to get down his med names as they went through his history and what led up to this event.

We went back in the ER and were met quickly by multiple people- doctors, interns, and nurses- who worked him up with blood pressure, O2 saturation, etc.  The entire time we discussed the “episodes” myself, the doctors, and the nurses who experienced it with us said that he’s having seizures.  He was brought back for a CT scan pretty quickly which he laid in like a limp and lifeless child.  It was SCARY to think that he had gone from perky and happy to this incoherent child so quickly, and that he wasn’t “snapping out” of it.

After the CT scan the ER doctors suggested that the episodes could be a dyskinesia effect caused by James’ new med, not necessarily seizures.  This idea never did get ruled out, however the episodes certainly seemed much more like seizures than they fit the description of this side effect.  Even still, the seizures could also have been caused by the medication.

James began “coming to” around 4pm after a short nap.  He was given benadryl shortly after that in case it was a dyskinesia issue as well.  At this point our neurologist was consulted (she isn’t affiliated with this hospital) and the CT scan results were also available.  James has a small ‘spot’ on the brain that could cause seizures.  Because of that, our neurologist said she didn’t want him to just be sent home until they were able to rule out that he wasn’t going to be at a high risk for more seizures. 

At that point James was admitted and we knew there would be an MRI and an EEG happening before he was able to go home. When the pediatrician came in to admit him, he threw up all of the tube feeding that he’d had from 7-8pm.  It was the only food he’d had since breakfast.  A dose of Keppra was also given, which is an anti-seizure medication.

It was after 10pm when a bed opened on the floor we were headed to so we were moved upstairs and got settled in.  James was asleep again and sleeping soundly, so I was able to go next door to the cafeteria and get some much needed “lunch” to bring back to the room and eat.  A nurse asked to have James’ reflux med since it’s not one that they carry so it could be verified with their pharmacy.  Then she brought it back and said that the pharmacy wouldn’t verify it since it’s a liquid, and that the doctor could override that but refused, so they couldn’t give it.  She hinted that we could refuse their suggested ‘alternate drug’ if we’d like and I said yes, then used the syringe that happened to be left with the bottle after she left and gave it to him.  That is how it goes sometimes… Yes, it’s allowed :).  It was after midnight when the last of the doctors and nurses that needed to talk with me came through.

Every 45-90 minutes the rest of the night different people came through to check vitals, put respiratory meds in the room, drop off anesthesia forms, and the like.  Between that, sleeping on a cot, and having Delaina wake to eat during the night (and share a bed with me which always leads to sore muscles and poor sleep out of care to be watchful of how she’s sleeping), I got very little sleep!  James, however, slept ALL THROUGH THE NIGHT.  I’ve NEVER had him sleep through the night, especially when people are all around him and touching him, etc.  He slept until after 6am!

In the morning I was able to change clothes and get Delaina dressed.  Then the different doctors, residents, respiratory therapist, and nurse came in.  A pharmacist came by… to verify the reflux med.  Weird? Yes.  She looked at it, stuck a sticker on it, then went on her way.  That made life easier.  By 9am there was a man there to do the EEG and he checked to be sure the timing was ok, then went to go get things ready.  The nurse came and said to be ready to go to PACU and the respiratory therapist was in the room.  A wheelchair showed up for James, and so did the man for the EEG.  Apparently, we were going to PACU for the MRI and there was just a miscommunication between people which had 3 things happening at the same time for James.

Since MRI is harder to ‘get in’ on the schedule for, we were brought down to PACU for the MRI to be done.  There appeared to be some miscommunication with all of that too.  James was in the wheelchair with his chart, but PACU was expecting a nurse to be there with us that would be administering an IV med for sedation during the MRI.  That didn’t happen.  Apparently that nurse was being called in and and wasn’t there yet.  So…we met with the anesthesiologist, got permission to give James his reflux med (which was now officially verified), then after waiting about 20 minutes they brought us back up to the room.

The neurologist came up to the room at that time and spoke briefly with me.  Her view and mine don’t exactly mesh as far as some of her opinions of behavioral control and medications for a child with Down syndrome, however she was ‘on call’ and available for this situation, so it was ok.  Unfortunately, I didn’t have the opportunity to ask questions and only saw her before all of the testing was performed.  She definitely came to inform me of a few things then to leave.  That was fine, however I expected to have her give us some results later on which never did happen. 

A little while later the nurse that would do the sedation came in and spoke with us, then said she would be back shortly to take us over for the MRI.  Sure enough, she came back about 12 and we went over for the quick questionnaire and to sign consent forms.  Delaina was in her carseat and stayed in the “outer room” while I brought James in and settled him on the table for the MRI.  Before going in the room with the machine I had to take out my cell phone, coins, etc because the magnet is always active.  I asked about my belt and they said “you might feel some pull, but it’s ok”. 

They asked me to go to James’ head to keep him calm and help him lay down while he was beginning to get drowsy from the medication.  As I stepped closer to the machine, I lost my balance!  Why? Because that magnet is so strong that my belt buckle was about to knock me over!  (No, it’s not a big buckle! LOL)

While James was scanned, Delaina and I went across the street to the other hospital and had some lunch.  Just as I was throwing away my trash my cell phone rang and they asked me to come back over and meet a nurse by the employee entrance.  James apparently POPPED up when the machine stopped running and they wanted to make sure he wasn’t going to be upset without me there.  He’s usually pretty good, but I did go right away.

When I got there James was behaving, however he was also giving the nurse trouble.  His blood pressure was 140/90 and similar.  Not good!  He was calm, relaxed, and his BP during the scan was more around 95/40.  After calling the pediatrician just to ‘report’ it, his BP started to go down at least a little and we moved back up to the room. 

Once we got up they did another blood draw, this time to check his thyroid (never did find out why, or the results.  I realized this when driving home!).  Soon after that the man came back for the EEG.  James “did ok”.   He was back to his baseline.  What does that look like?  Jumping on the bed, touching everything you say ‘no’ about, giggling, breaking down in fits of wiggles, then the very next second screaming in a fit of anger.  This is James.  He did ok, considering :).

After the EEG we finally got a sippy cup and some drink down him.  He kept that down!  First time!  After a little time we were told that James would be released and there was a new prescription for sleep med as well as a request to follow up with the neurologist’s partner that practices about 30 minutes from our home.  The floor nurse commented that since there’s no seizure med ordered, that there must not be any imminent risk and that the follow up would be to discuss the MRI.

We finally left about 5:15pm and headed out for fast food and a drive home.  Once we got home I took James out of the car and he practically fell over.  He had zero balance whatsoever!  He came inside and continued the same.  Eventually he perked up a little bit, got a shower, meds, and went to bed.

Now, it’s time for a good night’s sleep for Delaina and I as well!

Merry Christmas!!

It’s been a while since I posted (Sorry Linda!) but, here’s the crew!  It’s been a busy and exciting December and I have lots to share… some other time :).

For now, it’s time to go to sleep so Santa Clause can come.  I wanted to share this picture of our crew in their Christmas Eve clothes after church tonight.  Thanks Heidi for the suits for the little boys! They were all adorable :).

Micah

Yesterday was all about James, so here's just a bit about Micah :).

Micah is doing great as far as developmental milestones go.  He has matured so much in the last 2 years, but really over the past 4-6 months or so!  It's been wonderful to see him turn in to a "little boy" and leave the "toddler" type stuff behind!

There's one main area that Micah has always struggled, though, and he has made no improvements in this area.

He doesn't talk.

Not just "he doesn't speak well" or "he doesn't initiate things and only copies."  No, he actually really DOESN'T talk.  He doesn't attempt to use sounds to communicate, he doesn't mimic most sounds (occasionally he can look at us and mimic something, but it's not common).

Thankfully, he DOES sign!  So he has some communication, but nothing out of his mouth... not even a "mama" or "dada."  Nothing.

At our ENT appointment in November we learned that although Micah got ear tubes at the end of September (before our month of doom where everyone was sick!), that he still isn't hearing.  He failed the OAE.  He passed the tympanogram (with ear tubes, so it was an 'open' pass).  In the booth test before he got his ear tubes, he received a functional score of 60 decibels.  For reference, I understand that speech is at a curve right around 20 decibels.  In other words, he didn't hear speech.

We knew this, but we blamed it on his ears and put him through to get ear tubes.

Then he got ear tubes... and his booth test received... a 55.  Yes, 55 decibels.  Micah still isn't hearing.

Now Micah is scheduled for a sedated ABR, which is another hearing test that will measure the response of the brain stem to the sounds given through the ear.  Our ENT is guessing that Micah will need hearing aides, but will be waiting until after the testing to say for sure.

Just for kicks, James also failed his hearing test at 60 decibels the first time before tubes.  After his tubes he received a functional score of 30 decibels.  He, too, will have an ABR just to be sure he isn't dealing with hearing loss.  Of course he mimics, makes all kinds of "Jameseneese" sounds, and we don't have concerns with his hearing in a general sense (just his listening! LOL).

Unfortunately, these tests, scheduled a week or two ago, will not be able to be done until the first week of FEBRUARY.  So, 2 more months that I'll be saying "micah, Micah, MICAH, hey, come to the table please :)"

James

Yep, just lots of thoughts about our little man James.

James turned 6 in August and due to the timing of his well visits in previous years, we had his well visit with our pediatrician scheduled for early October.  Unfortunately that well visit turned in to a sick visit because he had strep, then pneumonia, ended up in the PICU for a week, and finally came home at the same time that two of his siblings ended up with pneumonia.  Thankfully he recovered quickly after that whole escapade and now he's doing great.

Just before the entire month of doom at our house, James had a minor surgery (you might remember, we had 5 procedures done in 2 days on the 3 little boys).  James received new tubes for his ears and he also had his g-tube "re"placed.  He'd had it from the time he was 2 until he was 5 1/2 years old and at that time he was eating SO WELL that we were able to have it removed!  YAY!

Then, the day after it was taken out, James decided to start refusing food again.  For 6 months we struggled with weight, eating, behavior escalating, the inability to get medication in to him without full restraint (and despite his small size, that little boy is STRONG AS AN OX!)...  and so the story went.

At our 6 month visit with the GI doctor he very candidly said "it's up to you, but if you were to say "what do you want to do?"  then I'd say let's just put the tube back in so he has it and it isn't so much of a fight every day."  And so we did.

Then he started eating.

After getting the g-tube put back in (which I will mention here was the easiest g-tube insertion ever because he didn't properly close after the previous tube and he was able to have it reinserted through the same opening as before... no pain, no issues at all!), he continued on the same diet of 40 ounces of soy based "total pediatric nutrition drink" a day.

Now we can get the full 40 ounces in him on a daily basis.  Most days he even drinks it all ORALLY.  He doesn't do well with a pump hooked up all day (he is a bit on the ACTIVE side), so it's great that he can get it in on his own!  Unfortunately, now that he's eating it all... we have another issue we've been dealing with the last couple of months.

He loses half of it back out of his g-tube!

Yes, it leaks OUT through the hole that was made for us to put food IN to.   Since we couldn't get in enough calories.  And now we can.  But they come back out!!

I imagine this would be an excellent tool for someone that wanted to lose weight but had a huge appetite.  They could eat all day long and just "let it back out" through their stomach.  Except, that for him it comes out AROUND his tube.  And it smells gross.  And it soaks his shirt.  And it soaks his pants.  And did I mention that it smells gross??

And so... unfortunately, James' weight gain still isn't taking back off like it should.  In fact, he's pretty much hanging out in that "maintaining" zone.

We go back to the GI doctor next month.  I'm pretty sure the plan will be to take the LONG (annoying) g-tube out and replace it with a Mic-key or a Mini button (hahaha... yes, they're really called that, two different brands of the same low-profile feeding button). We'll hope that a button will 'seal off' better and not allow half his feeds to come back out in a (smelly) mess all over his clothes!

In the mean time, we're also in the process of scheduling for a urology visit and a neurology visit.  He's old enough to say that he's not likely going to just outgrow the hyperactivity.  It's time to find out if there's any other underlying conditions to his extra energy, zero sleep, and other concerns that we've had over the past few years.

Our little wild man also just had his thyroid medication increased, so it must be his turn to get all the medical attention and figure things out for him! :)

iPad apps – Winter 2012 :)

Looks like it’s time to update the list of GOOD vs GREAT apps for the iPad!  I did a series of posts back when we first got the iPad and everything was brand new, but since that time we’ve “invested” in a few very worthwhile apps and have pushed many of the ‘fun but useless’ apps out to the curb in hopes of getting more LEARNING time out of the iPad!

GUIDED ACCESS:
First off, though, let me share about this wonderful NEW thing that the folks at Apple have added to the newest IOS update.  GUIDED ACCESS.  Yes, if you know what this is, you’re probably already jumping up and down saying “I’m so glad!!!” and if you don’t already know about it, well, I’ll get to the point! :)  Under Settings go to the “general” section on the left side then select “accessibility”.

Here there are many NEW settings including a “learning” section.  Under learning it says “Guided Access”.  This setting allows you to triple click the home button and LOCK the iPad in to a specific app!  This means that that app you turned on for your 3 or 10 or hey, 17 yr old, will STAY on unless they 1)learn your code and can input it properly (4 digit “unlock” code that you set!) or 2) they learn this next thing that I’m going to tell you.

I love guided access and it gives more independence to using the iPad for learning, because when I walk away I know the kids haven’t switched over to Pandora and made themselves a new Phineas and Ferb music station.  Yes, it’s happened.  However, one night as I was turning on the guided access so that my daughter would be STUCK doing her school work when she turned it on in the morning (hahahaha…), I actually, truly, got it STUCK.  As in, the home button stopped working.  At all.  I tried powering the iPad off and that didn’t work either.  The little note saying “triple click…” blah blah came up, but my triple click did nothing.  So, google helped me and holding down BOTH the power and the home buttons for a few seconds ultimately powered-down the iPad and I was able to turn off guided access upon rebooting.  *sigh*.  Hopefully that doesn’t happen too often (that was the first time after about a dozen uses of guided access…).

HYPERLINKS:
Another neat new feature is the Hyperlink feature!  Kristopher’s teacher updates the website DAILY and puts his homework online.  Awesome feature.  But aside from navigating there regularly, I didn’t just “see” it.  Now, you can go in to Safari and click the little box with an arrow coming out of it at the top near the address bar.  Click “Add to home screen” and it will create an icon on the iPad that will bring you directly to that website.  Awesomely handy for my 8 yr old to look up his homework daily! :)

APPS MY KIDS LOVE THE MOST
ABC Wee Sing:  I think this is Lynae and Brianna’s favorite app!  It has an option to explore the ABC’s with letters and saying their letter name.  You also explore animals where each animal is drawn (cartoon style) with a musical instrument, and the letter they start with- one for each letter of the alphabet.  Clicking the letter or the animal or instrument will tell you the name and sound of that item for instance, click the letter “A” and it says “A, the alligator plays the accordion”.  Click the “instrument” circle and it plays a sample of what the accordion sounds like.  Click the “animal” circle and you hear what an alligator sounds like!  This is pretty interesting when you get to Yetta the Yak playing the Yuachin (sp?).  Cool to hear what that sounds like!

This last part is actually my kids’ favorite!  It’s the ABC song… however… it’s available to play several ways.  It can just play it and you listen, and it shows musical notes dancing by each letter as it’s sung.  The fun way is to “play along” and it brings up the alphabet and says “press go to begin”.  Then, it plays the music and YOU select the letters (they are displayed in order) and try to put them at the appropriate places in the music.  Each letter is “sung” so it will fit correctly together in the music.  For some reason, this is a challenge and a big HIT with the girls!

Monkey math:  This is still one of MY favorites, and teaches kindergarten level math skills such as patterning, numbers,  adding, subtracting, and gives ‘prizes’ for skills that are reached.  Brianna loved it last year and now it’s appropriate for Lynae’s learning level!

Special Words: This is the most money I’ve spent on an app (over $10, I believe maybe it was $13?) but it was WELL worth it.  This was designed by the group Down Syndrome Education International.  It is the “See and Learn” program on an iPad!  You choose to match pictures of objects to pictures, or words to pictures, or pictures to words, or words to words!  It is customizable as well to add in your own pictures and words as well.  This gets your kids READING!! :)  (this is an app I frequently “lock” the iPad on to with the Guided access feature!)

Special Numbers: I admit, I purchased this because of my high hopes since I really like Special Words.  I haven’t spent nearly as much time on it however it is similarly customizable and works on counting, matching numbers, number order, same/different, how many, and more.  I am looking forward to exploring this one more, and again… it was similar cost to the first but one that I believe to be a good investment since I know the research and design that went in to the whole program!

Clean Up: This app is still one of Brianna’s favorites and it helps a child with making categories.  This was redesigned after we originally bought it an now shows instructions at the beginning and “how to” play.  There is a shopping cart, toy box, and closet picture and an item is shown at the top.  You drag and drop in to one of the three pictures to categorize it. Quick moving if the child wants it to be, and the instructions have about a 3 second delay then repeat. “where do the pajamas go?” (wait 3 seconds and repeat).  It can get annoying if a child walks away from it, but if they need reminders of what they’re doing, it’s great! :). 
These are just a few of the kids’ favorites.  My great plan is to get more of our favorites posted again over the next days, so we’ll see how well that happens! :)  For more app reviews go to http://cornishadoptionjourney.blogspot.com/search?q=ipad+apps

Celebrating Jesus’ Birth in a Santa Filled World…

Without letting go of “Santa” all together!

Let me preface this by saying—I have no issues with the man in the big red suit. My kids have been to “breakfast with Santa” in the past and every year we set out stockings in hopes that Santa will come and fill them with goodies and leave a gift under the tree too.

Where we differ from “Mainstream Christmas” is that we wholly believe that the holiday is to celebrate Christ’s birth, not to give gifts of “good cheer” and celebrate “holidays” that are man-made.

So how does Santa fall in line with a Christ-filled Christmas??

Santa, like Christian parents, celebrates the birth of Jesus Christ on Christmas day as well! It is because of the birth of Christ that we give gifts to our family and friends!

Here’s the thing…if you want Christmas to be about Christ—it’s going to have to be the parents’ job to make sure that your children understand that TRUE meaning of Christmas.

In decorating the house, it’s fun (and pretty!) to put up Christmas lights and a display outside. Have you considered a nativity scene or carolers instead of snowmen and Santa Claus? How about those Christmas stocking holders, do they spell out g-i-f-t-s on your mantle? Is your Christmas tree topped with a star or angel, signifying two main ‘parts’ of the Nativity scene? When you talk about the anticipation of Christmas is it about Santa coming and “what do you want for Christmas?” or do you spend more time on “Jesus’ birthday is coming soon” and “how should we celebrate His birth?”

Are your crafts revolving around reindeer and snowmen or do you have the Christ child in there too? Are more of your bedtime stories about the birth of Jesus or little elves in a workshop?

We try to find not just a BALANCE in our home, but a sure tilt to the direction of a CHRIST filled Christmas in our home! Sure, there’s our elf on a shelf that reports back to Santa, and there are reindeer on our stockings and some Santa snowglobes in our home. The kids anticipate Santa coming! But if you ask them why we celebrate Christmas, then those who can talk would hopefully be able to tell you that it’s Jesus’ birthday and we give gifts to celebrate HIM!!

Happy Thanksgiving!!

It’s been a busy but great week this week with the Bedford Family!  Shelley, Robert, and their 8 children drove down on Sunday night and arrived early Monday morning!  We had a busy week ahead and found a good balance of “busy” and “down time” together!

Monday Shelley and I went for an afternoon grocery run after finalizing a ‘menu’ for the week for our families. The rest of the day the kids played and enjoyed getting to know the ‘new’ kids since our families last gathered together 3 years ago!

Tuesday morning Michael had to work, and Robert, Jakob (their oldest son), and Kristopher went to the War Bird Air Museum for the morning.  In the afternoon, Shelley and I took Emmett and Delaina to IKEA for some wandering and shopping in Orlando!  We left the men home alone to do dinner for the kids two nights in a row and they did great .

Wednesday was an out-of-town day for us all as we headed over to Downtown Disney to walk the shops after a picnic lunch at a WINDY park on the river.  We did the fast-food thing on the way home.

Thursday was Thanksgiving so the day started early to get the Turkey in the oven and all the side dishes going!  We had a huge lunch together with our 17 children and the 4 adults!  In the evening we had several visitors stop in including friends of Shelley and Robert who they haven’t seen in 7 years!  At one point we had 10 adults and 21 children in the house.  BUSY but fun!  The Bedfords’ friends stayed for leftovers for dinner and we all enjoyed their visit .

Friday was a bright and beautiful day again. Robert and Jakob went to the Police Hall of Fame in the morning then we all gathered our crews all together to go to the Hidden Acres Farm to visit Mrs. Patti Bryan who runs Walk on Water Ministries for some HORSE fun!  She knew we wouldn’t be able to make it to our usual Saturday horse riding so she offered to come out on Friday afternoon for our family to ride and also donated free pony rides for all of the Bedfords!  What a FUN time we all had!!  Two of Shelley’s children (she also has 5 adopted children, all with Down syndrome, and three biological “typically developing” children) ride horses on a regular basis for therapy, but the others rarely have an opportunity to ride.  It was a great ending to a WONDERFUL week with friends!

We brought pizza and home-made “snowman” cookies that the kids decorated (nutter butters dipped in white chocolate and decorated), and drinks out to the farm to feed all of our crew and the volunteers.  Horses, outdoors, friends, pizza, and cookies… FUN!

Friday night we turned on 2 showers and raced to the finish line!  We managed to shower 13 children in just under 15 minutes! LOL  After the farm there was no avoiding a shower for everyone!!  Then it was time for packing up their things and putting their car together so they could pull out early this morning.  A late-night “goodbye” and an early wake-up call to finish up and see them off, and the Bedfords probably just now are arriving home.

Time to enjoy our weekend, get our crew back in their routines, help Kristopher make some progress on his school project, and get ready for the week ahead!