Sunday, October 11, 2015

Taking Candy From Strangers

I took Claire to watch big sister perform with her band this weekend.  She broke her glasses Friday in a fit of anger so she was bummed to not be able to see well. 

Everywhere we go Claire makes friends which is mostly awesome. 

 She got a little board with not being able to see the show and started taking pictures:

 of the field,

the performance, 

 Me (there are a lot of good ones of my legs),

her forehead, 

her feet,

The people siting around us. 

You get the picture.  I stopped her because she was distracting during the band and expecting a third grader to sit patiently during a seven minuet performers is a totally normal thing to do.  The guys behind us were like "oh, no, no it's okay Claire."  This happens ALL THE TIME and it drives me bonkers.  Excuse me person we met six minuets ago, I'm trying to teach my child manners and you are basically saying, ignore your mom this behavior is totally fine, Bahhhhh, why?!  This is one of those Down Syndrome things where people think she is four (because she is a total shrimp) or they think different rules apply or honesty I don't know what they are thinking.  Dude, she can't get in your car or drink your smoothie or open your purse, it's not fine!  And here is the rub because I am almost certain that these same people would not think it was cute if an adult women with Down Syndrome tried to, say, sit on their lap.  She is nine and she can't sit on strangers laps.  I would never go up to a mom while she is trying to rain in her unruly offspring and say "actually kid, it's okay." 

Then we went to Subway today and Claire was visiting with someone while I was ordering with the other kids and they gave her candy.  Not, can your kid have candy but hey, I gave her candy and she already ate it.  Oh my gosh people, I know at least four kids with Down Syndrome who could have died because of allergies, diabetes... Thankfully Claire is not one of those kids but really who gives strangers candy when it's not halloween?  This also happens all the time: candy, food, beverages, one time a lady put Claire on her lap and let her eat off her plate at Red Robbin while my back was turned.      How's a girl supposed to learn?  Claire still has a really bad habit of just drinking whatever beverage is near her but her whole life people have been like "no, it's fine" while I've been like "Claire, say no to communicable diseases!"  

Motives are not in question here.  I know these people are super nice and want to have a good experience with Claire.  When Claire was about four Nate and I joked that we should make her a t-shirt that said "I'm 4 please treat me like I'm 4" and it's still so true. 

To all of our people who are so nice to Claire and still expect her listen to her mama, thank you. 

Doesn't she look fierce!  They were awesome. 

Saturday, October 10, 2015

Alice On Down Syndrome

Our four year old Alice agreed to help me with today's post.  It's interesting to hear about Down Syndrome from her perspective:


"We both share things together.  I share with Claire a lot." 

"Claire has Down Syndrome so she gets to have the body walk and buttons and gold medal"

"My favorites things to do with Claire are jumping on the jumpy castle and playing tag.

"Something special is that Claire is my sister"

"Something special about Claire is that she has Down Syndrome"

"Claire does chores"

"I like it when she slides on her belly with me"

"I like to go with Claire in the backyard and play on the play structure"

Friday, October 9, 2015

Getting Organized

Life saver!  I have been loving our new homework/chores station.  Why didn't I do it sooner?  

Morning Board 
(make bed, laundry in hamper, breakfast, get dressed, hair, teeth, shoes, backpack) 

Every morning I'm running around in circles like a crazy person, "put your shoes on, brush your teeth, where is your back pack, where is your coat, where is your homework, did you eat breakfast, oh my goodness where are your shoes..."  while four children wonder around looking at me with vacant expressions.  This has to stop!

After school and Bed Time Routine  
(chores, homework, shower, laundry in hamper, pajamas, vitamins, drink, teeth, potty) 

Thank you Pinterest, you are saving grace to a mama on the edge.  $10 project (with my 40% anything Hobby Lobby couple from the app) 

-Magnetic white board, two sided 
-Magnets (I made mine out of plastic jewels we had laying around and magnet tape) 
-print pictures of the kids getting ready responsibilities, morning on one side and after school/ bed time on the other side. 

This table lives by our front door and all the backpacks sit underneeth on the bottom shelf.

These two magazine files are awesome.  One has a folder for each child with their classroom info in to (monthly class calendar, phone numbers, whatever the plural for syllabus is for the high schooler...).  The other is where everyone puts the homework they need to do and things I need to sign for them.  Paper piles can bring me to tears.  The mountain of paper from school gets mixed up with the bills and junk mail and coloring pages and whatever else was hanging around on our kitchen countertop and oh my I have to resist the urge to toss it all.  Good luck trying to find that one piece of paper as the bus is pulling up, it is consumed by the pile and it will now take approximately twenty minuets to retrieve.  This system has taken away so much stress for me.  

Thursday, October 8, 2015

The Wildcat walk

Oh the cuteness, last week I went to our pre school, 1st grade and 3 grade girl's fund raiser "walk and fitness frenzy."  It was adorable.

Wednesday, October 7, 2015

Most Frequently Asked Questions About Adopting A Child With Down Syndrome

I have been looking for inspiration (31 is a lot of posts) and found some today. Most Frequently Asked Questions About Adopting A Child With Down Syndrome is a collaborative post written by a handful for adoptive families answering questions about their adoptions. I believe they are all international adoptions so I'll give you the foster adopt side of the story.  If this is something you are interested in or you would just like a good read pop over and check out the post.

Q: Can you tell me about your child/children with Down syndrome? 

Claire came into our lives as a foster child at 10 months old and was adopted at three and a half.  She is now nine years old and we could not imagine our lives without her.  She is as much my baby as any of the ones I birthed.  Claire is friendly, engaging, determined and of course adorable.   

Q: What led you to adopt a child with Down syndrome? 

I felt called to adopt at the age of 18 after working in an orphanage in Haiti.  It took some serious discussions with my husband Nate for me to agree to any biological children though I treasure Alice and Makenna and I am so thankful for them.  The Down Syndrome was a surprise.  Just as Nate and I were getting licensed for Foster Care, very unexpectedly, his niece and nephew came into care.  We felt strongly that this was God's timing and happily welcomed Claire into our home.  Nate had worked in pediatrics and knew how to handle some of the medical challenges.  I was exposed to people with disabilities, mainly defenses, growing up hanging out with my mom where she worked in the special ed room at my school.  Both Nate and I had never met anyone with Down Syndrome before Claire.  Over the years Claire was with us in foster care I could't imagine giving her to any other family.  We were caring for her, painting her tiny toe nails, taking her to doctors appointments, advocating, taking her to therapy, taking her on walks, tucking her in (to her wedge) at night, praying over her... We did all the hard things and all the fun things. Who could love her like us?  Love cancels out fear.  We knew that this is what we were meant to do, period. (Adopted Like Me)

Q: How did you prepare yourself and your family to adopt a child with Down syndrome?

Ya, we didn't, sorry family.  I had an emotional year after our adoption working through things (a post on this is regret).  I could have prepared myself by getting more information about Down Syndrome (I was overwhelmed and liked denial) and finding other people who had children with DS.  It would have been encouraging to meet families and see their every day, normal lives with Down Syndrome (I thought I was too busy to reach out). 

Q: How was your child’s transition into your family?

When Claire first came to us it was a really hard transition.  She was our first and without the 9 month pregnancy, wrap your head around having a baby time it was definitely like jumping into the deep end.  My friends threw me a baby shower which was very special and something I would recommend if you have a friend adopting. I actually wrote a post on how crazy The First Few Days were last year.

Q: How did you communicate with your child during his or her transition? 

In foster care you are caring for your child while you are waiting for your adoption, go foster care! 

Q: How has adding a child with Down syndrome affected your family dynamic? How have your typical children reacted to him or her?

Claire was our first child which has been pretty awesome.  To all the other kids Down Syndrome is pretty normal.  They know a bunch of kids with DS.  Adoption is normal too.  Our four year old is still waiting for her adoption.  She just doesn't understand why she can't be adopted too.  All the cool kids are adopted you know. (siblings and down syndrome)

Q: Does your child have any health concerns in addition to Ds? Does he or she have any health conditions that were not included in the file? 

We knew Claire's medial history when she came to live with us.  She had already had heart surgery and had a history of pneumonia.  It was not safe for her to swallow liquids and so she was on a feeding tube.  She was on an oximeter to monitor her breathing and was on oxygen.  This sounds extreme but over the first four years she grew out of all of these issue and is now pretty healthy.  Her biggest health issue now is sleep apnea.   

Q: Does your child have any characteristics of autism or Institutional Autism? If so, How does that impact your family? 

No.  She was never institutionalized, yay foster care.  

Q: Does your child go to school? If so, what does his or her IEP look like? 

Claire is at our local public school, the same school her sisters attend. She is in the third grade.  Her day is split between a typical third grade class and a special ed room.  This is a good balance for her.  She needs to spend time with her pears but also gets overwhelmed in the large class and benefits from the one on one instruction and small class size in special ed.  Her IEP is long and covers academic goals as well as therapy and some class room modifications like preferential seating and a microphone her teacher wears connected to headphones she wears. 

Q: Does your child receive any therapy? Does your insurance cover these therapies?

Claire's insurance has always covered her therapy.  Claire did private therapy (Occupational therapy, physical therapy, speech therapy) as well as school therapy until she was 6 and started going to school all day.  Now she does more nontraditional therapy like horse back riding (which our insurance doesn't cover).  When you adopt children through foster care they receive medical insurance from the state after their adoptions until they are 18. 

Q: One of the biggest concerns for prospective parents is Long Term Care. How are you planning for long term care? What do you expect his/her future to look like? 

Claire is a very smart little lady and we do not like to place limitations on her.  There are people with DS who have jobs, live independently, live in homes with help and even get married.  If Claire wants independence we will work towards that.  If she feels safe at home she will always have a place with us.  I look forward to the years she is grown and out of school.  I'm sure we will have many excellent adventures together.    

Q: To conclude, what one piece of advice would you give to families considering Down syndrome adoption?

I would say to any family considering adoption that support is so important.  Find people you can be honest with and share your struggles who will understand and support you.  We are so thankful to be raising our kids with people who understand their needs and love them and us where we are.