Brianna is officially...

HOMESCHOOLED!

Yes, we withdrew her today.  I haven't mentioned the things going on with her on here, because, quite honestly I didn't find it an appropriate avenue :).  But her class schedule wasn't working (very little academic time), another intermediary schedule was formed but still not a "good" one (very little time in the typical kindy classroom), and we're not sure there's really any other options, even if we decided to hold an IEP (which yes, was scheduled).  In the end, we felt that this was the answer-- that we are supposed to do this ourselves for her this year.

I by no means have had any issues with either of the teachers involved and are very sorry to be pulling her from their classes, specifically, and in fact still have 3 kids in one of those classes :).  It was just a matter of whether we'd be ok with "ok, good, or best" and we want best for her, which right now means homeschooling.

We are very blessed to have a welcoming church which, since she isn't of "legal age" of HAVING to go to school, has allowed her to take part in their Kids' Adventure Day program in their oldest class (typically 3-4 yr olds).  She will be going there for "social" time and to get that interaction with friends that she craves :).  She'll then work with me at home on all the academics as we build our homeschool curriculum.

We are excited about what this year will bring for Brianna and for each of our children in the different ways God has made them and different ways that each of them learns best.

Now... all you homeschooling moms... :) :)  Be ready for some questions!  Like... if you homeschool your child with disabilities, do you use a specific curriculum, or do you do an 'eclectic' approach?  Either way, what programs/curriculum do you use?  I have all kinds of things already from our many adventures just in raising our kids, but are interested in other things for schooling as well.

The next great adventure... :)

We have a new child!!

Don't panic... we gave the 9th child (visitor) back.  And we still only have EIGHT kids.


But you see... one of them has magically transformed. 


On Saturday we had one child... that child is the child that doesn't listen, that turns evil the moment we turn our backs (I don't say this lightly!), and that does any and everything possible to hurt someone, get them in trouble, aggravate people, etc... everything... without ceasing.  That child didn't even appear to HEAR, because not a single thing sank in.  It was really as if there must be some MAJOR problem going on (besides having Ds and being in an institution for 3 years...) because not only did she show so many many signs of RAD (reactive attachment disorder), but she also was not acquiring language, showing response or remorse, etc.


Therefore, if anyone is in Christ, the new creation has come: The old has gone, the new is here! (2 Corinthians 5:17)


And on Sunday, that child left.  I'm sure she may be back visiting from time to time... but she has been gone for 36 hours now, and instead of being in tears thinking "what are your PLANS, GOD??" as I was just three weeks ago when we discovered new behaviors which made us even more cautious to let her out of sight for even a moment's time with our other children...  we are now saying "could it be??  Could she have decided that she WANTS to be a part of our family, and WANTS to love??"


Dare I say that having our little visitor (baby #9 for the weekend) may have helped her??

She took in little "G" very quickly.  She was KIND to her.  It was as if... she was caring for the "youngest" that had just been moved to the orphanage.  Seriously, I think that's what it was!


And all of a sudden, after about 36 hours with our new friend, she decided... to listen.  To hear.  To respond.  To be kind.  To reach out.  To BE DESIRED.  To DESIRE.  I think she realized that she likes it here.


We have a new child!  I hope she will stay!!! 

We are at 8 1/2 months home.  It hasn't been an easy road.  But let me tell you, this last two days has proven to me that there IS this child in there.  There is potential for love and growth.  She's in there.  Even if she goes away and turns back to the "old tricks."  We now know that this is possible.  It gives us a glimpse of what will be, if nothing else.


Wow.  


""For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

A little visitor

We have a sweet little visitor at our house this weekend! Little G is 3 and was adted 2 years ago. She also has Ds. Everyone needs an occasional break, and we are blessed to live in a fairly close proximity to this family so that we can help out on occasion. This is G's first weekend visit :)

Brianna and Lynae both want to baby her, since she's the size of Lynae but isn't walking and they see her as a baby. Aleksa is keeping a close eye on her but keeps bringing her toys and wants to make sure she's ok. I think that's from years in orphanages making the "new orphans" feel better about their arrival...

James is surprisingly interested in her, and wants to sit close by her and play his own thing. He hasn't messed with her or otherwise interacted with her, but he sits about 2 inches off her hip and plays :)

Kristopher of course is fine with her, and the rest of the kids haven't really reacted. So far so good :)

Integrity

I will stand by a person of integrity into the depths of accusations about them, because a person of integrity will share the truth in love and will act upon their knowledge, but will not return with insults or accusations of their accuser.  A person of integrity will be a faithful friend and will return that with faith in you as well.

There are risks and costs to action. But they are far less than the long range risks of comfortable inaction.
~John F. Kennedy 

When something that I have stood for determines that inaction will be their response to a serious incident, my own integrity is based on my fleeing from their association and severing ties.

Proverbs 16:17
The highway of the upright avoids evil; those who guard their ways preserve their lives.

1 Chronicles 29:17
I know, my God, that you test the heart and are pleased with integrity. All these things I have given willingly and with honest intent. And now I have seen with joy how willingly your people who are here have given to you.


I will not defend the reputation of something that cannot show its integrity.  They may defend themselves against their accusers.

I never worry about action, but only inaction.
~Winston Churchill 

I will also not stand among those that make false accusations.


Psalm 27:12
Do not turn me over to the desire of my foes, for false witnesses rise up against me, spouting malicious accusations.

In the end, I will uphold this:
Philippians 4:8
Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

I say this all not to pass judgement, because it is NOT my place to do so.  But it is my personal responsibility to stand for what I believe in.

James 1:27
Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.

What to say

What to say, what to say...

We've had several goings-on that I haven't yet posted about, mostly because things have been quite busy around here, as you can imagine.  Today is day 11 of school for most of the kids and all of them are adjusting well to their new environments and teachers and schedules.  Of course not without issue, but the kids are doing as well or better than expected in their classes.  Now, if we can just work out the "details" then we can go on with things :).

I wanted to post that I was SO encouraged, and so SURPRISED by the responses to the post about "how do you know me"!  First off, I haven't received many comments lately, so I presumed that not many people really were reading since my posting has been a bit more sporadic here lately.  So the amount of replies on the comments and on FB was a shock.  I also love that many of you posted not just how you originally met us, or found us on the web, but you shared encouraging words with us about how our journeys intertwine or how this blog has been an encouragement to you.  THANK YOU for sharing those precious thoughts with us!

I love to blog and to come back here to ask questions, share triumphs, and just let our children's accomplishments shine for themselves, and I'm honored to know that there are others that are enjoying following along with our family as well.

Short and sweet today, but it's time for me to go pick up 7 kids from school :).

James’ Birthday Party!

James had a great time at his birthday party yesterday!  He certainly knew that this party was about HIM and he was going to prove that he deserved it :).  He danced around the middle of the circle of family and friends, opened his gifts and smiled the entire time.  What a fun time he had!
Without further ado… Pictures! :)

James with his “Mama Ruth!”  She made the 2 hour drive to join us for his birthday party :).  Mama Ruth was James’ foster mom for 3 1/2 years before he joined our family and we are grateful to now call her family too!
 
Brianna, teaching Grandaddy and Aunt Birgitt how to use their new iPads :)

  
Notice the new shirt? He chose today to spit up LOL.  Oh well, I can handle a LITTLE spit up when the BIG problem is gone!!

Grandmommy made a dump truck cake and cupcakes!

The rest of these pictures are just because I have incredibly beautiful children (if I do say so myself!) and wanted to get a nice picture of each of them before we left for church today :)
-Posted oldest to youngest
   

Car Decal

On our 12 passenger van we had a decal that said "Adoption, a beautiful way to grow your family" compliments of Christine Reed mailing it to me :).

Now we have a 15 passenger.  I need a new decal!  I'd love to design my own and have it printed, but am having a hard time coming up with a phrase that really speaks to my heart as to what I'd like to say to whomever might be driving behind us, or see our van parked at the grocery store or the school.

I probably want it to be about adoption.
Maybe special needs.
I think I want to add the Bible address of James 1:27 to it.
I don't want it to have the "savior" mentality or to speak of something *we* did. (ie: we saved a child)

So I know what I don't want.  Just don't really know what I DO want.

Ideas??

Catching up! :)

Let's start with today and go backward... LOL

Today is the very first day that I have nothing on the agenda that I have to do for someone else, aside from the "normal" stuff of keeping up with kids and house.  No appointments, no kids home during the day (well, until 12:15 when Lynae gets out anyway), and nothing calling me out of the house!

Yesterday was a great day!  I was able to do something for ME!  I went to the first day of a Bible study at our church.  It's a Beth Moore study called David, Seeking a heart like His.  The first day was great, and I'm looking forward to the next 10 weeks as we'll go deeper in to the life of David and apply the Biblical principles to our own lives.  This is only the second women's study I've been a part of in the last ten years, since I've always had other responsibilities which wouldn't allow me to commit to a long term study.  Yay!  Kristopher enjoyed going to youth group since Park Ave just started back up after a summer break.  He's excited :)

Tuesday I had 90 minutes alone too, it's weird having the kids in school!  I went to Target and picked up more shorts for the girls, since Emma has scooted through the bottoms of most of hers.  Then it was off to pick James up from school.  Before I get in and explain that, Kristopher also started Karate.  We've talked about having him take karate for a while, but hadn't had all the right timing.  He started and really enjoyed it.

Ok, back to James.  He had an appointment with the GI doctor to follow up from all the tests he had done just a couple months ago.

Here's the results:  EGD: Normal.  Motility study: Normal.  Upper GI: Normal
Of course a few did say he has reflux...

And then, the after effects:  The doctor took James off of EryPed, which is an antibiotic that helps with motility.  He'd been on it for just over a year, since right before moving in with us last May.  James' throwing up was EXACTLY like the effects of slow motility!  But when the studies began coming back normal, he was taken off of it.  (Oh, and since he'd had Salmonella last August, we couldn't do these studies until it had been at least 7-8 months past the time he had it so we couldn't blame it on the Salmonella being in his system still).

So, finally some answers-- though they didn't exactly solve anything.

And about 4 days after coming off the EryPed, his occasional vomiting episodes and frequent spit up changed.  He still was 'urping' up little bits of spit-up during the day, but every night after (or sometimes during) dinner he was throwing up his entire meal.  The GI doctor also upped the amount of Pediasure he wanted James to have, so instead of 4-5 cans, he was supposed to get 5 cans daily.  This meant that we were trying to tube-feed James if he didn't get in the 5 cans, and we went from not using his mini button (gtube) for a YEAR except for an occasional fluid when he was actually sick, to tube feeding every night before bed.

This went on for about 23 days straight.  Let me just say, I hate vomit! :)  It got to where we would just have James sit at the table a few extra minutes after dinner so he could throw up in a place that was relatively easy to clean it up form, then we'd give him a bath.  Then, he'd go back and play for a bit, we'd put all the other kids in bed, tube feed him- often Pedialite instead of Pediasure just so he'd be hydrated, wait to see if he was going to throw that up, then give him another bath, and put him to bed... figuring that he just wasn't going to keep it down.

We tried changing the schedule we were feeding in, changing bath times (in case that was stressful and inducing his throwing up), and doing anything else we could think of to help.  Nothing changed.

At day 24, I decided I was done.  There was no way that this was working.  He wasn't getting the calories that he had been getting even a few months prior.  I looked up everything to do with the EryPed and couldn't find anything to suggest that taking him off of it had anything to do with his throwing up.

At the same time, we were dealing with majorly hyperactive behavior from James.  At his 5 year physical, our pediatrician, when I brought up the idea of starting Ginkgo Biloba for James, asked if we'd like to be referred to a behaviorist so we could talk about other "medications for his behavior".  I've had 4 and 5 year olds a few times, and I have to say that James is exceptionally more active than any of the rest of them :).  That said, he's only just turned 5.  He's in preschool.  I don't want to use psychotropic medications to help him until I've exhausted all of our other options with behavior.

Then, I began reading about Pediasure.

I read the ingredient list.  I saw the second ingredient, Sugar.  And, with that he came off of Pediasure.

He was throwing it up constantly, he wasn't getting the calories that were needed, but he WAS getting a ton of sugar.  His behavior needed changes, and the summer time was when I could see whether changes we were making would really make a difference or not.

So, off Pediasure he came.  It was August 4th, and he has made a 180 as far as his daily vomiting AND reflux goes!  He had milk (yogurt) in ONE smoothie drink that I made him, and that night he threw up.  He had a different cup (and coughed a bit drinking) at school this week and spit up about a quarter size amount.  Other than those two episodes, he has not refluxed AT ALL since taking him off Pediasure!

Tuesday at the GI appointment his doctor said that he never has to have milk again.  Though Pediasure is LACTOSE free, it is NOT MILK FREE.  It has Milk Protein Concentrate, which is also known as CASEIN.  Often times people hear of "gluten-free, casein-free" diets.  Though we'd checked James for celiac, he's not been tested for other allergies.

Now, we have the answer!  James is allergic to casein!  GREAT news, because he may be able to progress with his eating now!!!

Not only that, but today I spoke with James' teachers and the aide in the room was with him last year.  I'd noticed a change at home, but I asked her as well... Has she noticed he's much CALMER??  YES!

It's like we have a different child in our house!  He's still the same little ornery kiddo at times, and we have a lot of work cut out for us to get him to follow directions, etc still LOL. BUT.  He is able to sit still, participate in activities, pay attention to what is going on around him and not just GO GO GO all the time.  He's not throwing up, he's happier, and all over, he is doing GREAT!

I'm so excited for James, and so happy for all of our family that this 'change' was what he needed.

Someone asked what James is eating now.  He's getting "smoothies" at every meal, and is also beginning to eat small amounts of 'regular' food, such as cereal bars, crackers, and other foods.  In his smoothies, we are using soy milk, coconut milk, extra virgin olive oil (for calories), rice protein powder, and a mixture of fruits and vegetables that we would give him if he was eating everything 'normally'.  In order to make it more realistic to make 3 smoothies a day (Wesley is also on a blended diet, but with more regular foods), we're using some stage 3 baby foods instead of fresh vegetables and fruits.  We've also used canned pumpkin and applesauce, fresh bananas, and even peanut butter.

Ok, this is now a super long post, but that's the update, catching up on us!  We are all doing great and getting in to the new routines of school!

How did you find me?

Lots to say, lots to post, and lots to update on!  But... I'm tired :)

So, I'm going to ask you a question instead, and save the blogging for tomorrow when I will have some TIME by MYSELF :) :) :)

For now... how did you find me?  When did you first read our blog, and how did you come across it?  Do you know us in real life?  Did you find us on FaceBook?  Did you find us randomly?

I recently got a phone call from someone who (to my knowledge) found us randomly.  It was interesting talking to her, and I wondered... how did other people find us?

Fess up :)  I think it would be fun to know!

First day of school

Monday was Aleksa's first day of school EVER!  2nd grade.  And Brianna's first day of inclusion kindergarten!

We survived!

www.mcornish.org

We all survived day one of school for Aleksa and Brianna! Yes, we got a call over the weekend that things had been worked out for Aleksa to start school. She went and had a good day! I think she likely finds the routine comfortable, and won't show her difficult behaviors in that area for a while. Instead, she will push more at home to see if we are really going to come back for her after each day of school...

Brianna's day was great too. She went to her first day of inclusion kindergarten and enjoyed it all! She has a sweet friend from church in her class and the two of them are paired as buddies in school. C is a great "match" with her and it's wonderful to know that her parents are also friends of ours and they are a sweet Christian family! I have been praying that God would provide a Christian friend that would help Brianna go the right places but without mothering her. C is doing just that and was excited about being with Brianna.

Tomorrow (tuesday) Lynae starts KAD at the church and wil go with Michael to that. She went on and off last year but this is her first time being enrolled full time (two mornings a week). Now, what will imdo with myself??

Oh yes, I will take James to the GI doctor tomorrow :). He has been REFLUX FREE since coming off Pediasure almost 2 weeks ago! After twenty some days of daily vomitting, 12 without is a miracle :) :). I'm interested to hear what the doctor has to say tomorrow!

Happy 5th Birthday James!!

James is FIVE today!!

We are celebrating his birthday with family and a few friends next weekend, but I couldn't let the day go by without at least a little Happy Birthday post to our sweetheart :)

That thing we call school

Oops... haven't posted yet!

Thank you to those that wrote and said "how'd it go??"  It really is nice to know that some of the 'hits' on the blog and FB are people other than my mother who I talk to every day :)

As far as school goes, we had five kids start this week and they are all really enjoying it so far!

Kristopher has Mrs. R and is very happy in there :).  He's learning and excited to be with friends from Kindergarten and 1st grade.  He is a pretty easy going and self-motivated kid and I'm sure he'll have a great year!

Emma started back in the class she has been in the last 2 years.  She has the same teacher as last year and has had the same aides for 2 years!  Emma does really well in there and was happy to be back on Wednesday.

Wesley started school this week for the first time ever!  He is in Kindergarten, but is in a K-2 class which includes Emma.  His teachers have known him since before he came home throughout our adoption process and he spent a little time in there last year as well at awards programs and class parties with me.  He cried most of the first day, stayed for just a short day on day 2, and did about "80% better" today than his first, according to his teacher :). It will take time to adjust, and next week he'll attend on Tuesday, Wednesday, and Thursday.

James started back in his PreK class on Wednesday as well!  That class has a new teacher that was previously in Kindergarten, but it is the same two aides as were in there last year.  James is testing the boundaries but in general is doing well.  He's on a blended diet now (casein free) and has not had ANY more episodes of reflux since last Saturday (when he ate yogurt)!  That is 9 consecutive days without even any 'urps' (with the one exception) after 23 consecutive days of James throwing up during dinner EVERY night! YAY~!

Micah started back in his PreK class also.  He is with James and this is his 3rd year in that class.  Micah is also testing and looking for what the rules are going to be, but generally doing fine.  He has been walking much better to and from class too.

Brianna starts school on Monday!  Kindergarteners do testing the first 3 days of school so Brianna went today for just an hour to be tested by her new teacher.  She did well and has now met the teacher 3 times.  She's not being NEARLY as shy as she has been the last 2 years at school!  We also know of one friend from church that will be in class with her.  She's really looking forward to going to school on Monday!

That brings me to Aleksa...  Unfortunately, Aleksa hasn't been able to start school yet.  Her placement needs to be adjusted before she starts and that was no easy task, it seems.  It's nothing "going outside" of her IEP, just that she was placed with an age group and classroom that wouldn't best serve her.  The school staff has been very kind in communicating with me and trying to work things out so she can start as soon as possible.  For now, she's enjoying a few more days with Brianna, Lynae, and I at home. I haven't heard yet whether things have been worked out for her to be able to start on Monday or not.  Typically, she wouldn't attend on Mondays and Fridays anyway, so it may be that she starts later in the week.  Right now, no idea :)  I thought she would be starting today, but it hasn't all been worked out yet.

And Lynae, she'll start the KAD program at church two mornings a week starting Tuesday!

So yes... that means that a two days each week ALL of my kids will go to school in the morning! :)

I have been cautious in posting anything because quite honestly the anxiety that Aleksa's placement (or lack there of) has caused me is a bit overwhelming, and though I know that there was and is no fault involved, it's hard to not let emotions overrule thought when doing my nice little therapeutic typing :).

And there it is, the first 3 days of school for 5 of the Cornish Kids!

Our first day of school!!

Wesley

 Kristoher

James

Micah

Emma

The three kids that didn't start school :)

Aleksa

Brianna

Lynae (with Grandma)

Praying for our Teachers

Outside of the difficulties we may have with the "school system," there really are a GREAT group of teachers, aides, support staff, therapists, counselors, principals and assistant principals that really LOVE our kids.  Tonight I am praying a specific prayer for each and every one of the people that will interact with any of my kids this school year.

Father, Thank you for each teacher and staff member and each volunteer that has worked to bring this school year to a start tomorrow.  I am so thankful to You that You have provided Christian teachers and adults in my children's lives to walk beside us and help to educate our children.  Thank you for giving them the loving spirits that they have as they serve in our school system.


Today I ask you specifically to give them a good night's rest tonight so they are able to be at their best tomorrow.  Give them the endurance they need and the encouraging words they will say.  Please help our children to be well rested and to be excited about the year to come.  I ask that you give the teachers that extra dose of understanding and the children an extra dose of calmness as they go about their days tomorrow and the coming weeks.


Most of all, please use the teachers as You would to teach in word and deed the skills that are not just academic, but reach much further into the lives and hearts of the children.  I ask that you bless each person that opens their hearts up to our children to love them and guide them this year. 


I also ask that you be with us, as parents, and help us to help the teachers in any way we can.  Help us to know when to start and know when to stop.  Help us to advocate for our children and to know Your will for their schooling.


Thank you that you have the days worked out and know our needs before we put voice to them.  We love you and entrust these our children and their teachers to you.  In Jesus Name, Amen.

Discussion:

What do you know about Casein sensitivities?

Background:
From Wikipedia: Casein is often listed as sodium caseinate, calcium caseinate or milk protein.
From Pediasure's website:  Ingredients: Water, Sugar (Sucrose), Corn Maltodextrin, Milk Protein Concentrate,(....)

Personal info: James has been on solely Pediasure since he was 1 year old.  He has spit up only once (not even any 'urps' during the day) since starting him on a blended diet.  The time he spit up, he had yogurt in his drink at lunch, and he spit up at dinner.  BUT, he then sat down and finished his drink (very unusual!).  4 out of 5 days vomit free is probably a record since he started the nightly vomiting!!

Wesley 1, Mommy 0

Not too often is a child's success also a parent's failure, but today is a great example of it.

I must admit, I'm not a very good loser, either.

Our 72 hour EEG was set to be 'finished' today at 10am.  At 7am when I walked in to the boys' room to get James and Wesley up (Micah is with Michael getting ear tubes placed this morning), it had been 69 of the LONGEST hours of my life.  I've already explained the restrictions of having to be constantly plugged in to a wall, keeping the other kids away from the equipment, positioning and repositioning the camera, and Wesley's intense dislike for the assembly on his head... but in addition to that, Wesley got this strong 'bug' on day 2 that he wanted it OFF.  When he was laying on the floor, he'd be rubbing his head across the rug to get it off.  We'd stop him.  I literally spent ALL DAY on Saturday staring at him after nap time.

Sunday I stayed home with Wesley and Aleksa and let him have some time on the porch since he hadn't been allowed out there because the only place his cord would reach was DIRECTLY under the swing... not a safe place to be when there are other kids about and I wasn't going to fight that battle with the 6 kids that would want to be swinging.  It would be constant, and inevitably if I turned for a second he'd get run over.

All morning, I monitored.  During the first two nights I woke about every 2 hours overnight, but starting out hourly until about midnight or so, in order to either calm or check on Wesley to be sure he was sleeping and not messing with his head gear.

Last night I spent more of the night in his room than I did sleeping, and Michael went in there quite a bit as well, at least every 2 hours or less... all night long.

At 6:20 Michael got Micah out of bed, dressed, and out the door at 6:40 as I went to the girls' room to get them up (they were awake and playing).  Having not heard from the boys' room, I sat with the girls a few minutes since I'd ignored them pretty much all weekend having to stay with Wesley every moment.  At 6:50 I went to get James and Wesley out of bed.  Wesley was sound asleep.  James had gotten up since hearing me and the girls.

Apparently, my little stealth found his moment of prime opportunity and used it to his advantage.

At 6:50, the EEG 'cap' was laying next to Wesley in his bed.  Yep, Momma FAIL.

I have NO IDEA whether ANY of the EEG is any good, because from about 24 hours in Wesley was intense about wanting it OFF of his head.  All of the leads could have come off a day or so ago and we'd have no way of knowing.  I guess we just wait and see, but I see this as one FAILED venture!

I don't even want to consider the thought of having to repeat this study.  Some "no-no" boards (arm immobilizers) would be a necessity, and he would simply not be able to be laid down.  Because that is when he is pulling at it.  Which means you'd have a 72 hour scan including about 48 hours of fussing, crying, and screaming because he LOVES to GO now that he can...

Did I mention that school starts in just TWO days and I had all kinds of things that needed to get done this weekend that I haven't been able to because this was so much more labor intensive than I'd ever imagined it would be?

*sigh*  See?  I'm not a very good loser in this case...

Is He Adopted?

Just as many parents with children with special needs often ‘zones in on’ other parents who share the same parenting challenges, often times I notice when a child appears to be adopted.  Being an adoptive parent myself, I have spent some time in the adoption community and can quietly and discreetly tiptoe around the subject to see whether my conversation companion cares to bring it up.

What would make someone NOT want to talk about adoption??  There are actually many circumstances around adoption which may make a family uncomfortable speaking openly about adoption, especially if their adopted child is with them.  Here are a few examples:

• The child may be insecure about their adoption, and discussing it may make them uncomfortable.
• If there are biological children as well as adoptive children, speaking openly about adoption may make the adopted child feel singled out, or different.
• There’s always the possibility that the child is NOT adopted, and bringing it up may cause embarrassment, and possibly doubts and concerns for the child either then, or later in life.
• Some couples come openly to the idea of adoption, whereas others do not.  If the child doesn’t know they are adopted, such as a toddler that was adopted as an infant (regardless of whether they look anything like their parents or not), then opening that door publicly isn’t such a great idea.
• Sometimes asking such a simple question brings a much more complicated answer, and one that could be more private than the couple would like to discuss, such as their use of an adopted embryo, or a donor, which may go back to their own fertility issues.

I’m sure there are more, but those clearly point out some of the valid reasons people may have for not wanting to discuss their adoption casually and in public. 

That said, often times there IS a kind and ‘open’ way to bring up the subject of adoption without causing any of the “conversation fallacies” that are listed above. 

• Bring up your own story.  Bringing up that you are a parent is often natural when engaging another family (especially if your kids aren’t with you), and mentioning that some of your children are adopted allows the parent to open up as well without being concerned that THEY will be the one committing the social faux pas.  If you have adopted siblings, friends, or are adopted yourself, finding a way to bring this in to the conversation will open the door.
• If your adoption story hasn’t started yet, but you (obviously, since you’re reading this J ) have an interest in adoption to some extent or another, then share that interest.  Maybe you hope to adopt one day, or have looked in to adopting in the past.  Maybe your family isn’t quite complete but you don’t know whether it will be completed through the gift of adoption.  Regardless of how you connect to the idea of adoption, gently bringing that up in conversation opens the door for them as well.

Another question often raised is this:  When talking openly about adoption with someone, are there any subjects that just shouldn’t be brought up, or do’s and don’ts of talking to someone about their adoption experience?  The answer is simple: YES.  There are certainly parts of adoption that friends discuss quite casually, yet when strangers openly ask the same question it can make an adoptive parent not only uncomfortable, but their adopted children as well.  Here’s a few do’s and don’ts of “adoption talk” to help guide a safe adoption chat!

What you can openly ask:

• talk about the process
• what brought the parents to decide to adopt
• where the child is from (if it was an international adoption)
• whether the parent traveled to meet the child
• how old the child was
• how long the adoption process took from start to finish
• how the parents learned about the child
• what agency or resource the family used to adopt their child
• whether the family thought the process was overall easy to maneuver or whether it seemed difficult
• how things are going now that the child is home
• anything about the child in general—not related to adoption! (how old is she now, what does she like to do, what’s her favorite sport or activity, does she like school… etc)

What not to ask or say:  (note: some of these are fine to ask within reason, especially if you are interested in adopting, but not “grocery store encounter” type of questions)

• how much did the adoption cost
• was the adopted child what you expected they would be like
• did you come across any corruption within the adoption
• does the adopted child have the behavioral issues that people see on the news
• whether the parents knew about the problems the child has (especially if the child has behavioral issues or special needs)
• avoid comments which ask about the child in a negative light, for instance, asking what difficulties are there, the hardest part of bonding with a child, etc.
• don’t put the adoptive parent on a pedestal, and avoid comments such as “I couldn’t do what you do,”  or “it takes a special person.” 

A special note to friends, family members, and acquaintances of adoptive parents: Your comments matter.  More so than a stranger at the grocery store or someone at the park, what you say will be remembered for a long time.  Negative comments about a prospective adption, about a new adoption, or even about your own regrets about the parents’ decision to adopt after the fact are not helpful. 

When a parent decides to adopt and comes to you for advice, share openly.  When they come looking for an ear to listen, your listening ear is often all they are looking for.  In my last 3 years working with adoptive parents both pre-adoption and post-adopt, the most sad stories are from parents who say they no longer have anyone that they are comfortable talking to that knows them well because they don’t support their adoption.  Imagine a new mother excited about the upcoming birth of her baby and the negative comments about “you shouldn’t.”  Or bringing home a new baby from the hospital to be met with relatives’ comments of “that baby is going to be too much for them to handle,” or “I told them it wasn’t a good idea.”  


Similar emotions are involved with the adoption process as are involved in birthing a baby, and these comments in both contexts can bring nothing but heartache. Guard your heart.  Guard your words.  Protect your relationships, and continue to be someone that the adoptive parent can come to-openly- to talk.  

A last note:  Though this wasn't one of the original "archived articles" that I've written, I had several adoptive parents request an article discussing these topics.  I hope it will be met with the same positive embrace that the previous article on special needs has :).

EEG

NOT loving the EEG.  If it was just a box with leads connected to his head, that'd be one thing.  But, it's not.  It's a box with leads connected to his head, that's then connected to a second (huge, heavy) box, that has a video camera on it, which is connected to a cord which has to be plugged in.  The video portion of this makes it VERY ANNOYING! 

Not just the idea of having your house being 'monitored' for 3 days, but the fact that Wes wants to be DOWN, wants to be rolling and scooting.  ANd the box attached to his head is one thing, but he's now also tethered to a WALL.  We have 8 kids.  No surprise..  That means that I also am constantly having to make sure that the other kids don't mess with the camera and point it where it's not aimed at Wesley anymore.  Or, that he's moved out of the camera field of view.  Or, that they have walked past and touched the camera box at all, and it ends up unplugged.  Our outlets have babyproof swivel covers, and the camera plug doesn't fit very well in them.  

After nap, Mike also noticed that the box that's supposed to say Wesley's name said "data card loose".  Ugh. So, we called tech support and they were very quick to call us back.  The technician said "it's not this, but go ahead and do this just to see if it helps.  Change the batteries."

**DING DING**

Hello, we were supposed to change the batteries after 24 hours with the machine.  That would be at about 10:30/11am this morning.  The time was... 2:30. 

Yes, that took care of the problem, though the tech said there IS a "low battery" indicator that would show, so she expects there really is an issue with the data card, and that we'll need to call support back in a little while.  Great.

Now, as if there weren't enough things to grab along with Wesley and transport in order for him to DO anything... we also have a two-box and cord (which isn't allowed to be plugged in to an extension cord...) to deal with.

I will be SO happy when this is finished.  So much for one last relaxing weekend before school starts.

On the other had, prayers are appreciated that the EEG comes back NORMAL, meaning that it does not show seizure activity.  I think Wesley would agree that neither of us are enjoying this experience at all, and the socked fists are further proof that he's not loving (and is trying to remove) his new 'conehead' turban as well...

72 hour surveillance

On Wednesday I took Lynae for her follow up cardiology visit, which was GREAT!  Our cardiologist, for the first time ever, said she only wanted one more visit then would RELEASE my child from care :)  YAY!!  Lynae had a VSD and it is closed. (I prior thought it was a PDA but it was explained as a VSD and now I'm not positive what it was :)  ).  Either way, it's GOOD now!  She'll go back in one year to make sure that as her heart grows there's nothing else that 'shows up' that's not visible when she's this tiny...

On Thursday Michael took Micah for pre-op for his ear tubes.  He'll get them put in on Monday.

As for the title... Wesley was fitted with a 72 hour EEG this morning.  We made it through day 1 with the kids unplugging it only about a dozen times (the video surveillance part, not the actual EEG!).  Monday morning Wesley will have it taken of at the same time (or right after) as Micah's tube surgery.  Mike's going one way... I'm going another way... and our summertime babysitter will be here with the rest of the crew for the morning.  

I can't believe that school starts in just a few days... WOW!

Should I say something? Or just walk on by?

Before I had children I was always particularly intrigued by children with special needs and their parents.  My senior year of high school I babysat for a family a 2 year old with cerebral palsy.  I learned so much during that year and lost a little bit of my insecurity in approaching people who had children with special needs.  I always wondered, though, whether they would think me rude, or if they would take my kind words toward them and their child as an opportunity for friendship.

I found out later on for myself. 

Almost six years ago I gave birth to the most perfect little baby girl that was so sweet and the tiniest baby I’d ever held.  She looked a lot like her older brother and was such an easygoing newborn.  When she was 8 weeks old she was diagnosed with Down syndrome, a genetic condition when the body has 3 of the 21^st chromosome instead of 2.

Looking back at myself “pre-disability-club-membership,” I can answer the question that I always wondered then.  I can say with ease that if you have a kind word to say to the parent of a disabled child… that without a doubt, share that with them!  Some parents have very little outside support and encouragement, while others are well connected.  As with any parent, there are a lot of needs that a young child has.  Parents of children with disabilities face those same challenges, and sometimes health difficulties or delays in development as well. 

So, what should you say to the parent of a child with disabilities, and what might you want to keep to yourself?  Here’s a little help in that area.  Most of all, remember that the parent of a special needs child is JUST LIKE any other parent… and their child is just like any other kid!  After all, we are all created in God’s perfect image.  A child with disabilities is a child first, and they want the same basic things that any child does.  The parents?  They do too.  Acceptance and Friendship are two of those things!

What to say:

Encouraging words about the child

She is beautiful.  He’s so well behaved.  Look at that great smile she has!

Encouraging words to mom

You handle yourself so well.  I bet you’re a great mom. 

General conversation not aimed at the mother or child, but just the person

Wow, it’s hot out today.  Have you been to the new theater in town?

Questions not pertaining to the child’s disability

How old is your son?  Did you have light blonde hair like hers as a child?  What a cute shirt, where did you find that for him?

What not to say:

Don’t speak as though the disability is bad

I’m so sorry he was born that way.  I’m sure it’s hard dealing with her all the time.

Don’t put the parent on a high pedestal

You must be someone very special. I could never do what you do.

Don’t point out the difficult things that they may be dealing with

Wow, he has a lot of troubles, doesn’t he?.  Does she always scream as you walk through the mall?

Don’t ask intrusive questions, or things lined with aiming guilt.

What’s wrong with your son?  Was it something you did that makes her that way? Will she outgrow all those problems?

One of the biggest things to consider when talking to the parents of a special needs child is this: It often means the world to them to have someone approach them and make kind conversation.  Someone willing to embrace them and their child in a positive way is often just the pick-me-up they may need.

A last note, is that some parents are very open about discussing their child's disability.  Some parents would really rather not.  Allowing the parent to make the first move in addressing the special needs of their child is usually a safe way to chat with someone that you don't know personally.  

**I often get a topic in my head and brew on it for a while.  Sometimes it makes it out to a Word document, often to be stuffed away in a folder and never looked at again.  Today, I took a second look at that folder and decided that a few of those articles I have hidden away because they're not how I usually blog... well, they're about to make an appearance.  So, the first of my "articles" about special needs parenting.  There are a few of them already written that I will post at random, and each is intended to be read by a diverse population of special needs parents AND those who may read about "us" but aren't quite "in our world"... yet :). 

With a side of CALORIES, please!

Tonight's dinner for Wesley, about 3 oz total all mixed together...
fresh advocado
brown rice
extra virgin olive oil
mayonaise with lime
prepared pesto sauce


Dessert... about 3 Tbsp and blended then refrigerated to a pudding texture
sweetened condensed milk
a slice of lemon cake/bread
honey
cream of coconut

And to drink, 8 oz
Strawberry Pediasure
infant oatmeal


Ok my caloric and nutritional friends... what should we add and what should we take out to better "round" Wesley's meals?  He's such a tiny little guy and he eats VERY LITTLE.  Today he ate pretty well, but his portion sizes are still small.  We're trying to get calories in but keep it nutritional.  He's also getting a daily children's multivitamin with extra Vitamin C and a dose of Miralax daily to... keep things moving :)

The evening's events (since Mike left for a church meeting...)

Finish feeding everyone dinner, James drank only about 5 oz of his 'regular' 12.
Let James sit longer at the table to see if he will finish his Pediasure while I start the bath water.
Get one child undressed for the tub (thankfully not in it yet) and hear James throwing up.  He hadn't drank more.
Get James, wipe him off, bring him to the bath instead.  Clean him up, have him sit on his bed so he'll stay calm and hopefully let more of his dinner settle (since not all 5 oz came up, I know, icky details...) and I'm flying solo and need to bathe more kids and that's just the nature of the beast... sitting on his bed is one of the only ways to keep James 'calm' when you can't continuously remind him... and his place at the table is already gross.
Bathe 4 more children very quickly then go back and get James, only to catch the tail end of his second 'episode' of throwing up.
Add James to the draining bath water and give him a second bath (did I mention he doesn't like baths right now?).  Then diaper and dress him and dress the rest of the kids in Pajamas.
All the kids play (Wes and Kris don't get baths in that tub, so we do theirs separately).
Put kids down to bed, about 90 minutes after dinner commenced.  Bring James to the table for a tube feeding since he didn't hold on to his dinner.
Tube feed James the full 12 oz, this time a mixture of Pediasure and Pedialite, thinking the slight runny nose after bath may be more than him taking in bath water and he may be getting a bit of a cold.
Clamp off tube and reach to undo the Mini-button extension when James begins throwing up again.
And again.
And again.
At this point, a brief recap...
James drank 5 oz.
Gave back 2 oz.
Took bath.
Sat quietly for 15 minutes.
Gave back 2-3 oz.
Took bath.
Played for an hour.
Got tube feeding of 12 oz.
Gave back probably about 6-8 in smaller increments.

A total intake of... 4-6 ounces.  And half of that is Pedialite, which doesn't exactly do anything for his caloric needs, but at least will hydrate him.

All this while I'm solo for the night and Michael is at a meeting.  Unfortunately, it is like this more nights than not.  ONLY AT DINNER!  I would love to know why he throws up at dinner every night, when he drinks the same thing, the same quantity, for breakfast and lunch, too.  And breakfast has been 8ish, lunch 11:30ish, and dinner 5:30.  That means that there is only 3.5 hours between breakfast and lunch (for digestion) and yet there's about 6 hours between lunch and dinner-- almost twice the time.  Even still, I couldn't talk James in to taking 1/2 the cup at 2:30ish because he's not hungry yet.

Oh the joys of parenthood, right? :)

Anyone seeing a grave mistake I'm making???  I'm going to start tube feeding 6 oz at 2:30 and offering him only 6 at dinner to see if this may help.  I'm afraid he may not be hungry for dinner if I tube feed him during the day, though, and I do NOT want to go backward, since he was tube-free for a YEAR (aside from when he was sick... just general day to day nutrition) and now he's been throwing up daily and GI wants him to have higher volume (which we're barely keeping up with the 'old' volume of 4 cans/day vs. the new of 5 cans) so... now he's getting a tube feeding almost every night.

I definitely prefer not to feed him during his sleep because he's such an active sleeper as well as my concern that he will throw up during the tube feeding at night and we wouldn't hear him.  We monitor the bedrooms, but he's a "quiet puker" LOL.

Anyway... I realize I've posted before (and over and over again LOL) but today is one more day on this journey and I hold out hope that some day someone's going to read this and say "that sounds like what happened with ____ and ____ seemed to help him!"  :)

GI appointment is the 16th :D  Can't come soon enough, I'm afraid...

A table for ten, please...

Since our adoption in December we haven't all been able to eat around one table.  We accommodated with a high chair at a corner and a wheelchair at another, but soon Lynae didn't want to sit in the baby seat any more and Wesley was getting a little more independent at lease with his drinking and also needed space at the table.  For the summer we added a kids' picnic table to the kitchen but we missed our family meal times!

This week we bought a table at IKEA that not only didn't cost a fortune, but would be very versatile for us.

This is actually 2 tables each of which serves 6, pushed together.  It leaves a big space for the wheelchair for Wesley as well as the ability to have a grandparent or friend or whoever join us for a meal.    We can also put them in the playroom or living room and have a big holiday dinner with combined families if we extend them.  Each table can serve 10 when fully extended (but is tight and doesn't have extra room for the wheelchair, which is why we bought two and leave them unextended). 

Anyway, we enjoyed our first dinner all at the same table tonight!!