Showing posts with label Parenting Special Needs. Show all posts
Showing posts with label Parenting Special Needs. Show all posts

January 31, 2012

Communicating through ASL

This has probably been a familiar scene at some point in your home ... your young toddler child is sitting in the middle of the floor throwing a temper tantrum. Tears are streaming down her face, her nose is running and her hair is matted to her face. She's kicking the floor and screaming ... and you have absolutely no idea why. You have tried everything to calm her down and nothing has worked. Age appropriate? Of course. Frustrating for both of you? Definitely. Sometimes there really is no reason for the tantrum ... but maybe sometimes there is?

I think it's safe to say that one of the biggest frustrations for toddler-aged kiddos is lack of communication. Or it's at least been one of the biggest frustrations for Brooklyn since she came home from China last June. I am convinced that since we brought her home at 13 months old, she's known exactly what she wanted and how she wanted it. But given the language barrier, her young age, and her un-repaired cleft lip and palate ... well, there wasn't much communicating happening from her side.

Enter our non-verbal saving grace, American Sign Language (ASL). We had used a few signs with our biological children when they were Brooklyn's age, but mostly because I thought it was cool and seemed like a good thing to do. We didn't actually depend on the signs for communication. But with Brooklyn, signs have pretty much become a way of life. I'm not just talking about the signs for "more" and "all done" ... I'm talking about complete non-verbal communication with ASL. Not full sentences mind you, but "toddler talk" using ASL. At 20 months old, our super-smarty-pants can sign over 40 words and the list keeps growing. She has a better vocabulary than my son did at her age. She can also understand just about everything we say, and thanks to ASL, she can respond appropriately using signs. And although we still have the typical toddler meltdowns, Brooklyn's non-verbal communication skills have drastically cut them down.


It's a long list, but to give you a clear picture of Brooklyn's non-verbal capabilities ... here are the words she can sign and understand: hi/bye, yes/no, milk, bedtime, play, all done, eat, more, help, blanket, bath, come, napkin/tissue, wash, sorry, book, thank you, shoes, socks, car, mommy, daddy, brother, sister, dog, hat, stop, music, clean, diaper, wait, yogurt, baby, scared, ball, up, down, hurt and hair ... there may be more but this is the running list I have. She can point to the body parts on her face and I also have another handful of signs that I am working on teaching her: I love you, coat, happy, train, brush teeth, kiss, want, dance, sit, stand, banana, friend, gentle, outside, cat, color, and TV. And there are countless more I'd like to learn but I try to only introduce a few at a time. She can pick up some immediately after showing her just one time, others take longer. Some signs are used for multiple words, a few are ones that are not actually ASL (just made up over time), and some are Brooklyn's toddler version of the sign. I'm happy to say that ASL has become a routine, necessary, easy part of our life.


Teaching Brooklyn ASL was not always easy though. In fact, the first sign I taught her, "milk," was probably the most difficult. I started signing a few important words when we were in China but didn't really begin trying to teach them to her until we had been home for a few days. Every time we had her milk out to drink, I'd hold it in front of her and sign "milk." I even amazingly got her to imitate me doing it a few times. I did this ... a lot. All the time. Once I knew that she could consistently do the sign AND that she understood what she was doing, I only gave her the milk when she signed for it. There were definitely temper tantrums during this transitional period and it was tough ... a battle of wills on more than one occasion. Two strong-willed ladies both wanting different things made for interesting days. But within 2 weeks of being home, she was comfortably signing "milk" and it was absolutely effortless for her.


I continued to sign other words with her while talking, but didn't intentionally teach them to her for a little while. I wanted to make sure we had "milk" down cold before I slowly started introducing others. When she started to use "milk" for everything, I knew it was time to learn more. It was slow-going at first and certainly an uphill battle on many occasions, but worth every ounce of work. Brooklyn learned a burst of signs in late November/early December when she was 18 months old - she was picking up multiple signs each week! We also noticed a drastic reduction in her temper tantrums around that time. I think that part of it was just being more comfortable with us, but I can also attribute her behavior change to language acquisition.


Using ASL has been really fun for our two biological children as well - they can interpret what Brooklyn is saying for other people who don't understand it and they even help teach her signs! My oldest daughter learns some ASL at school and she is always excited to teach us the new words she has learned. Brooklyn is still pretty non-verbal. She does not say any words, although she makes a few sounds that mimic words and she uses different tones extremely well. Sometimes I know what she wants just by the tone of her sound. She can say "ow" when something hurts and she makes an adorable "hu ha" sound when she wants me to sing to her. She can say "mamamama" but that's more mimicking a sound than an actual word. I expect that her verbal language will start developing when we begin speech therapy after her palate repair on February 21st. I really believe that all children could benefit from using ASL, whether they are speech-delayed or not. Research has even shown that verbal language acquisition is easier for children who know ASL!


Before you ask, no - I am not fluent in ASL and I did not know it before I had children. In fact, I only knew a handful of signs before we brought Brooklyn home. I have learned from a book, videos and yes, I'll say it ... an iPhone app :-) The resource I have leaned on the most is a great book called Teach Your Tot to Sign by Stacy A. Thompson. I have yet to look up a sign that wasn't in the book. I also like the Baby Signing Time videos because they show multiple children doing the signs in their own ways. The iPhone/iPad app that we have is called Baby Sign and Learn - it has digital cartoon-like babies that show the signs. There are many, many more resources out there for parents, theses are just the ones that I am using.


Communication with little ones is always difficult, whether they are biological or adopted. Now that Brooklyn has been home for 8 months, the initial language barrier is not an issue anymore. But there are still times when Brooklyn is passionately signing a word and I have no idea what she's saying. I am so happy though, that she has the skills to be able to effectively communicate what she needs and wants. And if it's something we haven't signed yet, the information is only a book, video, or iPhone app away.

September 21, 2011

Ming bai

I love this word in Chinese:  明白, or, if you do not have Chinese fonts installed on your computer, it is "Ming bai".
Little Lukai whom will arrive in Canada on Nov 24th!
Now, why do I love it?  Because it means "to understand".  Or, to "see clearly".  Literally, I think it means something like "bright" (ming) and "white" (bai).  And obviously, "bright white" is something which is clear, or easy to see and understand... not cloudy or convoluted.

Ping:  Daddy, when Lukai come?
Me:  Well baby, Lukai is going to come home in November.  Your Mommy and big brother D are going to goto China, and bring Lukai home.
Ping:  I was in China!
Me:  Yup.
Ping:  And you and Mommy and K came and got me!
Me:  Yup.
Ping:  Just like Lukai?
Me:  Yup.  Mommy is going to go to China, and bring Lukai home, just like when we brought you home.  Ming bai?
Ping:  Ming bai.
Me:  Good.
Ping:  Daddy...
Me:  Yes?
Ping:  You shave?
Me:  Yes, I will shave for Lukai.
Ping:  Good.  Because you have to shave.
Me:  Ming bai.

Lukai standing in his Foster Parents Yard

I love that Ping is able to see us as a family go though the adoption of our son Lukai.  It is amazing how many times she asks about her adoption, how she questions what happened, why we came, why she "had no Mommy" (her words!  Not mine!  Don't no one yell at me!), etc.  I also find it amazing that she thinks me shaving will help the adoption... mmmmm...

And we do our best to explain things on her level... but of course, they can only absorb and understand so much.  But watching us adopt Lukai... where SHE is on the inside now.  Where she sits at the table and listens to to us talk about Lukai while we eat, while we play, when we go to bed and pray for him... well, now... now she gets it.  Now there is a 明白 (ming bai) understanding that she could not see before.

This 明白 (ming bai) extends beyond just the actual act of adopting, and is starting to help bring bai-ness to other areas as well.  Lukai also has Spinabifida.  And like trying to explain adoption to a 4 year old, it was easier for them to understand it when they could see it.  Ping gets to see Spinabifida now from "the other side"... not the one with Spinabifida, but the one looking in.

Ping:  Lukai have an owie on his back?
Wife:  Yes.  (making muffins for diner)
Ping:  Like me?
Wife:  Yes.  Just like you.  (still making muffins)
Ping:  And his back is broken.
Wife:  No, not broken.  See, when he was in his Tummy Mommies tummy, part of his back is missing some bone.  Do you remember what that means?
(I love the way she keeps talking to Ping about these issues without turning them "into issues".  There is no "oh come sit over here and lets cry about this".  It kind of reminds me of when a child falls and scrapes their knee... if the Mommy looks shocked and starts screaming, well, then the child does as well.  But if the Mommy keeps calm, so too the child.)
Ping:  Ummmmmm... yes!
Wife:  Okay, well, when he came out, his Mommy loved him SO much that she had to get him to a Doctor to fix his back.  And they did.  Now, he is all better.
Ping:  Reeeeally?
Wife:  Really.
Ping:  Can I have a muffin?
Wife:  No.
Ping:  Reaaaaally?
Wife:  Really.
Ping:  But my back is broken!
Wife:  Your back is not broken, and you are not getting a muffin.
Ping:  Will Lukai have to go Doctor like me?
Wife:  Yes.  Yes he will.  But that is OK.  And you will be able to tell him all about it!
Ping:  Reaaaaaaally?!
Wife:  You really like "reaaaaally" dont'cha.
Ping:  *laughs*
Wife:  Can you help Lukai with the doctor when he comes?
Ping:  Mmmmmm... I think about it.  (I also love the fact that she is honest enough here to admit she will "think about it".  I was hoping for a "Yes!  I will take care of Lukai!", but that is still coming.  She will take care of her brother, she just may not know it yet, but she has that in her... I can see it.  She talks about teaching him how to "be not rude" and to "play nice")
Wife:  And are you excited for Lukai coming home?
Ping:  I think that maybe be OK.
Wife:  Oh good.
Ping:  Is my owie bigger?

I love that last question!  Sibling rivalry starting already!  The conversations really go on for much longer than that, but they start to get repetitive.  It is very interesting to see Ping work through her own life story by watching her brothers story unfold (granted there are differences.  Ping was in a wealthy 500+ child orphanage while Lukai is in Foster Care in a smaller/poorer city).  She can really see herself in it.  I kind of get now why people adopt more than 1 child (sometimes).

We waited 135 days for his LOA!  Uhg!

Originally, I thought 1 adoption and I'm done!  4 kids!  That's enough for any sane person!  Maybe a single adopted child is fine... because then adoption is the "normal" (goodness I hate that word) way child come into the home.  But for us, with 3 biological children, Ping was definitely aware of the difference... and I don't think she could connect her story to that of her siblings.  But she can do that now with Lukai.  And because she sees her other brothers and sister excited for Lukai before he even gets home... she is starting to understand she was loved before she got here and help connect her story to the siblings.  So that makes her story less scary.

And the fact that Lukai has Spinabifida as well... well, that makes her story even a little more less scary.

Now... having 5 children roaming my house in about 50 sleeps... that makes MY story a whole lot MORE scary.

August 21, 2011

Why Hello Spinabifida...

Ping:  Dad!  Dad!  DAD!  
Me:  What's up baby?  
Ping:  Can you take my picture?!
Me:  Of course!  Let me get the camera.  
Ping:  YAY!
... a few seconds later ...  
Me:  Okay baby, smile for Daddy!  
Ping:  What?  No.  I no smile.  
Me:  But you gotta smile for the picture.  You gotta look cute.
Ping:  I want you to take a picture of my back!  
Me:  Oh?  Your back?  
Ping:  Yea!  My back!  
Me:  Why?  
Ping:  Because I have something there!  
Me:  *smiling*  Yes, yes you do.  
Ping:  And people like to see it!  
Me:  Oh do they?  Well, that would explain why you keep lifting up your shirt in Sunday School...  that was an awkward conversation with your Sunday School Teacher.  
Ping:  What is on my back Daddy?  
Me:  Oh baby, we've talked about this before.  You had an owie on your back.  But the doctors fixed it, and now it is all good.  
Ping:  I had a surgar-ie on my back?  
Me:  Yes baby you had a surgery.  But, lots of people have had surgeries.  Mommy has had surgeries, Daddy has.  Even your big brother K has had surgeries.  
Ping:  But my back is broken?  
Me:  No baby, your back is fine.
Ping:  Can I see it?  
Me:  Yes, of course.  Here let me take your picture.  
Ping:  *looking at picture on the camera*  Heeeeeey, I have an owie!  Hahahahaaaaa!

That was not the 1st time, nor will it be the last time she will have asked me to take a picture of her back and show it to her.  Ping has finally clued in that there is "something" special with her back. Well, she clued into that fact a long time... I'm just slowly cluing into the fact that she has clued into it.

Now our beautiful Ping has Spinabifida - and not the "minor" one either.  We're talking doctors can't explain why she is doing so well when the tests show that she had nerve damange.  I'm not going to go into detail with all that right now, there are many great sites you can visit to get more information on Spinabifida (including this one), and our family blog has lots of information on Ping's specific spinabifida (I can be contacted if you require (or are curious for) more information on Spinabifida) - but what I really want to do tonight, as I sit here blogging is to paint a picture of what Spinabifida really looks like for us.  And since pictures are worth a thousand words, I'm gonna stop talking and add a couple of pictures.  Man, I wish my Grade 7 English teacher bought that "picture is worth a thousand words" principal... then the essays I handed in with all my doodlings would have been worth well over the 500 words she wanted me to write about Hamlet.  But I digress.  Sorry.  

Doctors...
Yes, we do have doctor appointments.  At first, it was quite often.  Many appointments with the neurologists, spine people, urologists, etc.  It was crazy.  But once all the initial assessments are done, its a once a year check up.  Hmmmm... kind of like NON-Spinabifida children have an annual check up.
Yes, there may be many Doctor appointments...
But she doesn't seem to mind.
Sports...
She does love her sports... she likes swimming.  Which is good, because it can be an excellent exercise for her.
At a friends pool...
... or at the beach.
Climbing...
She loves climbing trees, or play structures, she is going to follow her big sister G where ever she goes.  And since G loves climbing on everything, Ping follows.
The did eventually get stuck in this tree... and I had to get them down.
Happily she did NOT get stuck in the ropes though.
Soccer...
She was in the summer soccer league again this year, and yup, I was coaching.  This is her trying to steal the cooler full of freezies during a match.
Don't just stand there, help!
Karate...
Pings older brother D has been taking Karate for a couple of years now.  And much like any younger sibling, she wants to do what her brothers/sisters are doing.  The Sensis at the DoJo know she has spinabifida and have recommended that we get some chest padding for her, and put it on backwards when she starts sparing.
I'm a cute ninja!  Look, I had red flowers in my hair!
I have to blog about her 1st match, it was so cute.  I was worried that she would revert back to her  feisty ways, but when the sensi said "fight", she looked at me like "what, now, NOW I'm allowed to hit people?!"
Playing with others...
Me and the girls went camping a little bit ago - while playing at the beach and park the girls made friends with a small group of children (Indian, Vietnamese, french Canadian ... interesting group.  The kids didn't care) who were running relays.

And Dancing... oh yes, there will be dancing!
Every time a movie ends, its Dance Time!  The girls tend to jump up and shake their little booty until the music ends.  Well, this time, G was too tired to dance, so the Yeti had to fill in... I love at the end when she falls over shes shaking her booty so hard.
So yea, that's been about 2 weeks worth of life with Spinabifida there.  Well, the Doctors office was a while ago.  But the camping, swimming, relay running and booty shaking were all in the past couple of weeks... and it was a pretty busy week full of many activities which some may think impossible for a child with Spinabifida.  Now, every case is different, but this is ours... Hopefully there is something in there, that if you have been considering adopting, and maybe Spinabifida has come up in conversation, that you can use... even if only for hope. I know spinabifida is a big word, and I know it can be scary... and that's why most days when I see my daughter scratch her back, or lean awkwardly to the side I hear the voice in my head going "Why hello spinabifida... I had almost forgotten about you.  Guess I was too busy being amazed at how beautiful my daughter is."

June 21, 2011

I am a Coward

Hello, my name is The Yeti...
... and I am a Coward.


Ping enjoying a horse ride, even with Spina Bifida
Now, I'm not ALWAYS a coward.  There are many many things in life which I face bravely.  I can wrestle with bears wrapped in bacon... but for the life of me, children scare me.

Now that might seem odd as I currently have 4 (and one waiting in China) children.

Maybe it isn't so much the child that is scary, but more of the what can happen to them that I find scary.

I read some of the stories here on No Hands, I talk to many adoptive parents of children with special needs, and I know a few family with children who have special needs or other disabilities... and I think... I am such a coward.

I know I have two children with special needs, so maybe that sounds brave.  But I don't feel brave.

Swimming is a great activity for children with Spina Bifida
We tell our family stories in safe places like No Hands, we tell our stories in the shopping malls, church, Yoga class, pottery class, yes, even poetry time at our local Starbucks.
We tell our family stories to encourage others that this adoption thing can be done.  That it can be done well.  That children can find loving homes.  That children with special needs can be loved, and excel in life and accomplish so many more things than anyone could have expected!  That our families can be complete with the joys of children...

... but it is scary, see... and I'm a coward.

See I read and hear some of these stories, stories like Lilah (covered here on No Hands), or the little guy with hearing loss because of a cleft, or my friends whose daughter will never walk and has other issues... and I'm scared... I think "I could never do that" or "I could never deal with that, all the doctors, and unknowns and blah blah blah".

My children are brave.  My children with Spina Bifida... they don't get the choice to be brave or to be a coward... they have to be brave.  I have the luxury of being able to be a coward.

So much braver than me...

However, being a coward isn't all bad.  Well, okay, it is.  But the good news is that you do not have to be a coward.  If you have ever read these stories and maybe been a little scared, maybe started thinking "You know what, adoption is too big, it is too hard, special needs are too scary"... that is never the intent of our stories.  We mean to encourage, to show that family works - regardless of how that family is made, or what special needs may be present.


I never though we could adopt a child with special needs... now, I would not change anything.  I love my children, all of them.  The special needs don't even factor into the love.


And even if they are as scary as you think, once you see your beautiful child, all the fear will dissipate and be replaced with love.  Eventually.  Once they stop yelling at you in Chinese... or pretending to slit your throat while you sleep... you know what, maybe is wasn't the Special Needs that I should have been worried about.

So, I'm The Yeti... and I'm a coward.  :-)

NOTE: 
Yes, you should get educated about your child's special need and maybe have your wife read a book about it, but then again - you should be getting educated to be a better parent anyway, special needs or not.  You should also parent according to you child's unique situation... I will probably never ask my children with Spina Bifida to be a professional gymnast... but that doesn't stop us from having a great life.  From one coward to another... read and get educated on special needs, they are not as scary as you might think. :-)

February 15, 2011

Jubilee Promise





Miss Jubilee has been home a little over a year now. This is the place where we write about special needs and our children with special needs.  Way back when we began pursuing kids with special needs my husband, Dw, and I came to one conclusion:  The only true special need any child has is the need for a family.  



As the days have passed and Jubilee Promise has adjusted to being home, I have to say, she has blossomed.  And at some point in the last year, I suddenly realized I had really, truly bonded with her.  The deep kind of bonding that doesn't make sense to those who have never adopted.  The kind that when I gaze at her I am overcome with emotion that I would have the privilege of being her mommy.  The kind that when I watch her struggle to do something that my pre-schoolers easily do, my heart breaks for her.  




Dw and I had wondered how it would be to bring a just-about-to-turn-eight year old home.  Although there were a few blips along the way, we couldn't imagine our life without her.  And we would take a hundred more Jubilees.  She has added such a dimension to our family that is hard to explain, an extra sweetness.  We need her, as much as she needs us.


Her complete diagnosis is still unknown.  She will be seeing yet another specialist.  Although it would be nice to know her true diagnosis, we know that the best 'method of treatment' for our Jubilee was a family.


We are so very thankful she is ours.

Linny

January 21, 2011

Sink or Swim

Our daughter Ping has Spina Bifida.  Normally her Special Need doesn't impact her day to day activities.  There have been the odd emergency trip to the Spina Bifida Clinic... and the numerous check ups, and test, and MRIs, and neurology type things... but other than that... her Spina Bifida has not been on the forefront of our minds.

Her Spina Bifida affects some of our decisions of course... we learned the hard way that slapping her on a thin sheet of plastic and sending her shooting down a steep 40 foot hill covered in a thin layer of snow and ice with no protection for her massive head and back was, for lack of a better description, a "poor parenting choice".  Huh, who knew.  Go figure.

Getting ready for our 1st Swim
Anyway, one of the physical activities which she enjoys (and is good for her Special Need) is Swimming.  It is a great way for children with Spina Bifida to get physical activity with low risk of injury, and it is something which can help their mobility and strengthen their core muscles... and it can help attachment issues.  :-)

Lets travel back to Nov 2009 - courtesy of the Yeti Way Back Time Machine(tm) 

Me:  Why is she still glaring at me?
Wife:  She just doesn't trust you yet.
Me:  Really?  Why not?  She's been with us for like, 36 hours.  You think she would be OK with me by now.
Wife:  Ya, you'd think that.  I think you still scare her.  She doesn't seem to like your hair.
Me:  No, thats not it.  Its cuz you gave her the sucker when we 1st met her.  I only had Cheerios for her.
Wife:  Right.  4 years of "life" and "memories" are replaced instantly by 1 sucker.  It couldn't be that she is scared, terrified, and being chased by some huge lumbering hairy white man.
Me:  I'm pretty sure it's the sucker.
Wife:  You are such a moron...
Me:  Wait!  She's looking at me!  She's gonna say something!
Ping:  带我回家吓人的雪人我,我恨你。
Wife:  Do you think that was a happy thing she said?
Me:  Ummmm, no.
Wife:  Look, she will love you - she just needs to trust you.  Oh!  Take her swimming!
Me:  Really?  You think thats a good idea?
Wife:  Oh yea!  It will be brilliant!  She will be forced to hold onto you!  If she lets go, she will drown.  It will force her to bond with you.
Me:  Uh, I'm not sure that putting our newly adopted child into a life or death situation where she will be torn between the complete and abject fear of me and the troubling sensation of drowning is really the best way to create a wonderful loving bonding moment.  I'm not sure that will foster the spirit of trust and love of which we are seeking.  I'm pretty sure you can't force bonding...
Wife:  Oh what do you know about adopted children!  You didn't even read the books about attachment disorders!
Me:  Okay, we'll try it your way.  I'm sure it will be great.
Ping:  可有人递给我刀子,所以我可以杀死雪人

So me, our 10 year old son K and Ping all go to the swimming pool.  After the very confusing "swimming cap" experience, we find ourselves in the pool... which (un)fortunately did not have a shallow end.  It looks like my wifes cunning plan is going to work.

Me:  Ping Ping, come here!  Come to Ba ba!  I'll hold you in the water!
Ping:  没有
Me:  Look, water!  Swim?
Ping:  我会杀了你,你的立场
Me:  Alright, Ba ba is going to pick you up, and put you in the water now.

So, with her in my arms, facing out from me, we slipped into the water - and for 42 seconds, she clung to my arm while we started wading though the water.  Her little face lit up with a wide smile as she splashed her little delicate hands and feet in the water and giggled with joy!

It was around the 43rd second mark where she glanced over her shoulder and was reminded that I was holding her...

Ping:  我走
Me:  I can't let you go baby.  You will sink.
Ping:  我走!
Me:  I can't put you down!  You can't touch the bottom.
Ping:  我走!   我走!
Me:  Okay... I'll put you down.

It is around this time, as her little face slipped slowly below the surface of the water that I realized a couple of things...
  1. she wasn't reaching up for help, she made her decision - drowning was better than reaching out and taking my hand for help
  2. she has a bit of a stubborn streak to her
  3. maybe this attachment thing is going to take more than 36 hours
  4. those stupid swim caps are really uncomfortable
I reached into the water, took her gently under the arms and lifted her out of the water.  Thinking "surely now she realizes that she can not touch the bottom, that she needs me, that she will happily stay in my arms now and hold onto me and let me help her".  Boy... was I wrong...

Ping:  我走!!!
Me:  Really?!  You still want down?   Didn't you notice you just about drowned?
Ping:  我走!!!
Me:  Okay, here we go again...

And once more, my daughters beautiful face slipped silently below the surface...  I did get to hold her, eventually.  She stopped fighting me and let me lead her around the pool and had fun splashing her big brother.  :-)

Me:  Hey, we're back!
Wife:  How was swimming?
Me:  Oh great.  It went really well.
Wife:  See, I told you it would work!  And what are you wearing on your head?
Me:  Swimming cap.  Apparently, you need them if you want to swim in China.
Wife:  Good to know.
Me:  Yea.  Hey, quick question.  If you had to choose between drowning and being stuck with me... what would you choose?
Wife:  She will love you.  Eventually.
Me:  She would love me quicker if I gave her the sucker.

October 15, 2010

My Denial Envelope

When we found Jubilee and requested her file, we were well aware of her diagnosis of  "Lower Mental Development".  In fact, it drew us even more to her.  




Somewhere in there though, I wondered if maybe Ch*na had it wrong.  I mean, "Lower Mental Development" could be just learning delayed, right?  We already had other kids with special needs, so it wasn't that I cared that she might be mentally handicapped. In fact, we had always dreamed of Dw's mentally handicapped oldest brother coming to live with us for the duration of his life, {which he did a few months ago and I wrote about that here.}  

But still, somewhere in there, I wondered.  
What exactly would "lower mental development" look like according to Ch*na's standards?

I remember the day of the health exam in Guangzhou{a few days before her 8th birthday} , the Chin*se doctor asked her to write her name.
  
She could not. 

 I think I just tucked that safely in my denial envelop and ignored it.  
{No doubt, needing some time to process it. 
People have always said that I am really, really, really good at denial. 
 I guess this experience with Jubilee is proving them right!}  


Jubilee had quite a few urgent health needs {including surgery}
 so all that took precedence.  We also live in a small city, 
the nearest big city being Denver and that is 8 hours away.
Isaiah{6}, Jubilee{8} and Elizabeth {4}

In the midst of all the health issues, we learned {to everyone's surprise} that Jubilee is also hearing impaired.  Whew.  Well that explained alot as well.  No wonder when she would be heading up the stairs and I would be calling, "Jubilee, Jubilee!"  she would not even turn around!  

Over the months she has blossomed.  Her sweet personality has endeared us all to her.  Her name fits her well. She runs with reckless abandon to those she loves and throws her arms around them.  

But all along I was filing little incidents of things Jubilee had done into my denial envelope.  Until one day, while driving in the car with our 15 year old Graham, I turned to him and said, "I think Jubilee might be mentally handicapped."   He turned to me, and with utmost kindness yet couple with a large dose of reality said, "Ya' think?" 

I started to almost laugh.  He wasn't being rude at all.  He just isn't one to mince words {which I am thankful for!}  I said, "Graham do you really think so?"  He said, "Mom, it's so obvious."  Huh?  Even  our 15 year old could see it.    I kept our little conversation to myself.  I needed to ponder the reality.  It's amazing how God made our minds to process things - and enables us to take the most difficult things in life to be processed in tiny bits.   So thankful He does it like that!

A month or so after the conversation with Graham, dear friends came from Canada to visit us in Colorado. They had never been to our home, so their kids did not know us.  They stayed with us for 5 nights.  One of their daughters is four years old.  One of the nights, the mom told her kids that the parents were all going out to dinner.   She also told them that our Emma was going to babysit for all the kids while the adults were gone. 

Their daughter burst into hysterical tears.  Since Emma is 17 years old and one of the sweetest kids you could ever meet, the mom was dumbfounded.  Why was her daughter hysterical?  When she calmed down enough to talk, the mom asked her what was wrong?  She said, "She can't babysit us, she's only THREE.  I'm four, I should be in charge." 

It turns out that her daughter had gotten the names of the kids mixed up and she thought Jubilee was Emma!!  And she clearly thought that Jubilee was only THREE.  Another dose of reality.  A visiting four year old thought my almost 9 year old was really THREE. 

My denial envelope was getting mighty full.








Even a four year old could see that Jubilee acted more like she was three!!

So here I am, finally opening the envelope and talking about it on here.  I think I am still processing why this envelope was so painful to open.  It has nothing to do with Jubilee being with us the rest of her life.  

Not.At.All!

       I think it has to do with the reality of what she will have to deal with in life.  The way outsiders treat her. That part just kills me.  I know, I know, it's reality, but this mama can easily turn into Mama Bear if anyone messes with one of my cubs!  

Anyway, slowly, my envelope is being opened and although it's a good thing, it's not necessarily easy.

Linny
 A Place Called Simplicity   

   

September 20, 2010

Just your average mom

Since I've become a mom to a child with a visible special need, I've noticed something interesting about the way some people perceive me.

Many people, from our guides in China to friends who know our schedules with various specialists to random strangers in grocery lines, want to promote me to sainthood. They say things like, "Thank you for giving her a chance at a normal life." or "Wow, you sure do juggle a lot of medical appointments." or "Just imagine what her life would have been like..."  And while I would love to sit back and polish my halo, I have a confession to make.

I'm just a mom.  Really.

Yes, we may have more doctor appointments than most.  (And of course less than many others).  We may even be on first name basis with more than one specialist at Duke University.

But I'm just a mom.

The fact that I'm raising two kids that came out of the special needs program (and one who came through the non-special needs program and yet has her own set of unique challenges) doesn't make me any more special than any other mom out there that loves her kids.

Because that's the whole point.  I'm not raising a label or a condition or even a disorder.  I'm raising my three children.

I'm just like every other mom who would move heaven and earth if it were in her power to make life a little better for her kids.  I'm just like any other mom who would step in front of a bus to save her child.  I'm just like any other mom, biological or adoptive, mom to healthy kids or those with health concerns, that at the end of the day sneaks into her child's room for one last glance at her cherubs before going to bed.  I'm just another mom who collapses into bed at night, spent from the effort of the day, yet happy to have the reasons to be worn out.

Because I love my kids.

Period.

Don't get me wrong.  Don't go into a special needs adoption blindly.  Do research.  Lots of research.  Know the full range of the condition you are considering.  Prepare for the worst, and hope for the best. 

And sure, there are a bunch of things that make parenting special needs children a bit easier.  Patience, tough skin (for those insensitive comments that are bound to come up from time to time), a reliable vehicle (to transport you and said child to various appointments), a network of family and friends( to offer support or to watch any other kids that you don't want to drag to marathon specialist appointments), and reasonable insurance are pretty high on my checklist of things that make this journey easier.  When you stop to reflect, you'll probably find that you already have most of those. 

If you are considering a special needs adoption, remember.  You don't have to be a saint, or even necessarily have "a full checklist" to adopt a child with a special need.


In the end, it really comes down to love...

July 27, 2010

Whoever Said Adoption Is Easy?

The 27th day of the month.

It is the day I am supposed to post. Stefanie may fire me if I don't. :)

Seriously I have so much I want to say and yet I can't find the words, and even more I am so not ready to share so much. I know those who may read this and really know me are saying this is probably a good thing! I am emotionally, physically and spiritually exhausted. Our family as a whole is exhausted and I don't doubt our new sons are exhausted as well.

It has been 36 days since we met our two newest sons in China. In life, 36 days is a SHORT time. And yet, it has seemed like a L-O-N-G 36 days to me … from where I'm sitting … at least for the moment.

I was telling my mother-in-law just this morning that one of the hardest things I'm struggling with now is the loneliness, the isolation and quite frankly feeling completely overwhelmed. It is not even the doctor's appointments (we've had 10 already since home), and we have 5 more scheduled and need to schedule at least 2 more DIFFERENT specialist appointments for one child and 1 more specialist appointment for another. It is so much more though … the unexpected issues (not blindsided mind you but hopeful they wouldn't surface … and yet they have), the inability to communicate … that one is so minor for some but now we have 2 of 7 family members with expressive communication difficulty and 2 with receptive struggles (one of whom I'm certain is temporary; the other I'm just not sure yet)s. And so a Momma's heart must adjust.

When well-meaning people say "how are you doing?" … I don't want to answer honestly because this is VERY HARD WORK right now. And I have been vulnerable and shared before and been told, "Well what did you expect?" While this may seem obvious, it is certainly not supportive. I guess an "I'm sorry you are having a hard time" would feel so much better. But maybe they are right. I just don't know.

I do have a few faithful friends who call me to check on me and support with their whole heart. Our family is supportive, some more than others. It is hard to ask for help though … at least for me. And it is hard to read about others and wonder "is it really that easy for them?" and "why is it always hard for us?" and "how could this time be harder than the last … we aren't facing heart surgery soon that we know of at least …". And then I realize many of us put on a facade and share what we want to, we don't open ourselves up, it is the blogosphere after all and by and large many of us are talking about our children. We want to brag on them and share fun family photos.

We who feel called to advocate for waiting children certainly don't want to paint a picture that would DISCOURAGE anyone from adopting a waiting child.

I am not blogging on my family blog for now. I know I'll be back. I just don't know when. I had to get away from it and take a break. I don't have much to share that is encouraging. And so I just don't want to share it. I have several blog friends who are paperchasing and/or waiting to travel to their children, many of them older. I am also greatly saddened and deeply disturbed by what I see as a RISING trend in disruptions in China. It makes my heart sick.

I don't honestly know where I fit into all of that. I feel at this point someone needs to be a voice for the children, which does not have to mean I am unsupportive of families who choose not parent a child in China. On the other side, when a child's adoption is disrupted … a child's life IS affected. And to me it is time to talk about it, but my feelings are too raw and emotional on this topic.

I want to just share though that even if the best-case scenario presents to you in China, the worst-case scenarios may in fact play out once you are home. I think we faced a rather worst-case scenario on our last trip because our daughter was so ill and we faced so much uncertainty about the days ahead. After we came home quite honestly many best-case scenarios have come to pass.

On our recent trip, we had some best-case scenarios and some times where we had to refocus our expectations. Nothing completely unexpected and yet some things we hoped would be better than they are. We are thus refocusing and moving forward with hope in our hearts and a resolve to do the hard work needed. And right now, we are facing head-on some worst-case scenarios. I won't go into details but honestly it doesn't matter for the purposes of this piece. What does matter is that adoptive parents MUST be prepared to face some really TOUGH days in China AND once home.

I have yet to see a rainbow and fluffy clouds beneath a sun-drenched sky since we came home on July 2, but I know those days are ahead. And when the moments of joy and compromise and selflessness and happiness abound, I will relish those MOMENTS even if the days are long.

May 25, 2010

I Can't Be Her Voice

As much as I'd like to put a protective cocoon around her and be her voice among other things, I can't.

Let me preface this entry with two things: my heart is in my throat these days as we wait for our final piece of paperwork to travel to China for our sons, and our daughter, who is 4 1/2, has severe expressive speech delay. Though she can talk and does very much here at home and is even trying more and more out of our happy home, no one can understand her except for a handful of people.

That is so hard for me to accept right now. Sometimes it is easier; right now, it is really tearing my heart out. I watch her struggle and it tears me up inside.

Yesterday at the pool, she was so excited when some other little girls came. They are both about 6 months older than her, but they are really sweet little girls and played with her last summer. They know "she can't talk like us" as they put it. They know she had something wrong in her mouth.

But yesterday, they sort of distanced themselves from her after awhile. And yet, she DID NOT GIVE UP. I wished so badly for her that she would just give up. But she kept trying to engage them with this toy or that toy she had brought, with doing this little jumping move or that. It was not enough this year. They are all getting older. I get that.

But my heart still aches for her. As she gets older, I know this is going to just be harder and harder. When you can't communicate your wishes or answer little people's questions, they assume you either can't hear or you don't want to talk to them. Oh bless her heart!

Yesterday I bit my tongue more than once as I wanted to scream, "She WANTS to play with you."

"Yes, she likes the color pink!"

"Yes, she has a name, and she IS SAYING IT. You just can't understand her."

At one point, she came over and was looking rather sad. You see, she has been working SO HARD on pronouncing her name. And she is doing a marvelous job. It sounds so clear to me and to others in our family. Even her ST was impressed. But the little girls: they couldn't understand her and told her as much. It hurt her feelings. They didn't mean it that way; they were not being unkind. They really tried to and their moms did step in and remind them of her name.

But.
But.

I can't be her voice for her for forever. She will be five years old in October. When I hear two-year-olds speak so clearly compared to her, it breaks my heart.

No one told me how hard the special need of not having a voice (or at least one that is understandable) would be. No one.

I do not wish to discourage anyone from considering adopting a child with a speech delay whether it be from cleft lip and palate or something else. I just want to prepare you and encourage you to prepare your heart for the hurt it will feel for your child as they struggle. But you see, it is her struggle to take on. She has to face this, and she is with more strength than I can even muster most days.

A year ago, the Prez and I swore we'd never take on the special need of cleft lip and palate again. Not because of the countless surgeries through adulthood. Not because of the way a child's face looks. Not because of the rude stares and questions. No, not any of that. Only because we cannot imagine watching another of our children be cast aside because she refuses to speak knowing they won't understand anyway or watching her fall apart in tears on the floor because WE can't understand a string of sentences she has just said and she KNOWS what she was saying.

We can understand most of what she says, but she often uses three words or less because when she strings together several sentences, we get lost. And she gets mad. At us.

It is much harder than I imagined. But would we do it all over again?

Well, you know what they say. Never say never. I guess God had different plans, because we are doing it all over again.

Our younger son waiting in China was also born with heart disease and cleft lip and palate. As far as we know, his palate has not been repaired. He will be five years old next week. We know he'll struggle and have to fight for every sound, every vowel, every consonant, every syllable, every word, every sentence. Most likely for years. And we'll be there fighting alongside him. And no doubt so will his little sister.

*Edited to Add: After reading Debby's comment below (THANK YOU Debby!), I need to clarify. I don't always stand to the side and let her be her own voice with no help from me. I definitely find a balance. As her Momma, I can definitely tell when she needs and wants my help and when she doesn't. My little girl is determined with a capital D! So anyway, I realized after Debby's great comment with great points that I needed to clarify. It is definitely a balancing act. I in no way want to communicate with this post that we should never interfere, which could definitely be a detriment to their feelings of self-worth and self-confidence. But the truth is, our DD will probably always have a speech impediment and I need to help her learn how to overcome that and help build her confidence in her own abilities even if others tell her otherwise. I need to encourage her to talk and to keep on trying even when it would be much easier to just give up. Hope this clarifies my post and again, thank you Debby for your excellent follow-up comment.*

May 15, 2010

Parenting Special Needs - Real Life

Recently our family had an experience that will forever be etched in our lives. It involves an adult with special needs…..and since we who parent children with special needs are raising children who will grow into adults with special needs, I feel strongly that this must be shared here. I don’t feel I can share it on my blog, but wish I could but there are too many people who know all the parties involved and the last thing I would want to do is hurt anyone. But I am sharing some very honest stuff about our lives here in hopes that it will encourage all of us who parent special needs kids. It is our story, so I am making myself and my family very vulnerable.


First a little background. My husband, Dw, and I have been married for almost 32 years. We are very, very, very {did I say “very”?} happily married. We have a blast together. We are soul mates. We have ten children. Three have grown and left the nest. Seven remain at home. The seven at home range in ages 3 to 16. We are abundantly blessed.


Dw was raised in Western New York, the youngest of four boys. My husband Dw is 55 years old. His oldest brother, Mark, is 70 years old and mentally handicapped. Let’s just say that from the time Dw and I were first married we planned that one day, Mark would come to live with us. It just seemed natural. We are family and we care for each other. Period.


We lived for the first 13 years in Western New York so we saw Mark regularly. If we went home to Dw’s parents we always invited Mark along to join us in whatever we did {things like go to the drive-in, get ice cream, etc.}. We would call and talk to him on the phone. We loved him greatly. We talked to Mark over the years….”when something happens to Mom and Dad you can come to live with us”. He was always eager at the thought.


Eventually we moved out of state and years passed. My in-laws got older and so when we were looking for a home we would always plan which room Mark would have one day. My father-in-love died 2 years ago at the age of 95, he was a very gentle, quiet man. This past January 2nd, on the anniversary of my father-in-love’s death, my mother-in-law had congestive heart failure and suddenly the reality of what we had been planning almost our entire last 32 years happened. We talked to Mark on the phone, yes, the time was right….he wanted to come live with us.


Dw flew to Western New York within days and before long he arrived home with our long-awaited Mark. Their flight arrived late at night and so I was the only one up waiting when they got home. When I heard them on the front porch I threw open the door and was squealing and jumping up and down, “You’re here, Mark - you’re finally here! Welcome home!” The kids were just as excited as we were. We have been preparing all of them that one day Mark would live with us.


Now the reality: Obviously we are a big family. Everyone has chores to do. Everyone has to pitch in whether you are three years old or sixteen - you pitch in. Even Elijah, at 3 years old, can get himself something for breakfast {as I keep an eye out for him}. He can fold clothes. He can put things away. He attempts to sweep. Chores the kids do: clean bathrooms, vacuum, sweep, do dishes {we don’t currently have a dishwasher}, put dishes away, etc. Everyone helps. Everyone. We make it fun when we work alongside each other and before long the house is pretty spiffy looking! It doesn’t last long – but those few moments of cleanliness are so appreciated by this mama! Our kids with special needs work right along with everyone else.

So the first morning after Mark arrived he came down and sat at the breakfast table and barked, “Get my breakfast!” I thought, “Uh-oh, this might not be the picnic I was envisioning.” Ugh We knew that my mil had given Mark everything he had ever wanted. She had waited on him hand and foot. If his bed wasn’t made by her in the morning he would refuse to go to bed at night. She was 93 years old and climbing the steep stairs in that old farmhouse to make Mark’s bed so he would happily go to bed at night. We had foolishly believed that when Mark came to live with us he would adjust and settle in. Not so. He began very quickly to make life very miserable. He had been waited on his entire life and he expected to be until he died.


I quickly realized what a monster had been created by my indulging mother-in-law. Surprisingly, she had not done this with her other three boys. She had actually largely ignored them. But Mark was the “special” one and I’m guessing she felt that since he was mentally handicapped life “owed” him an easy ride.

Mark soon wanted to go home. We explained that he would not be going “home” cause there is nothing to go home to, but that he would be going home to a group home or an institution. He wouldn’t believe us. {My mother-in-law is in a neighboring town about ½ hour away in a nursing home.} As the days passed, Mark would argue and complain {loudly} about anything that didn’t go his way. He would lie often. It was exhausting. I told Dw that at 51 and 55, “It would be easier to adopt quintuplets then to care for Mark!” {I wasn’t kidding.}

The whole point of this post is to challenge anyone with special needs kids not to allow them to believe that because they have special needs they are “owed” a life free from responsibilities or accountability. My intent is not to bash my mother-in-law for how she raised her son, but to be honest about the consequences of our parenting – they are lifelong!


We are convinced that had my mother-in-law held Mark accountable and required him to have chores {even chores he didn’t think were fun} she would have been better preparing him for life without her. If she had held him responsible for his lying she would have been making him a responsible adult. As it was Mark was allowed for 70 years to believe that he was at the center of the universe. What a shocking blow for him to find out otherwise and what a shock it will be when he goes to live in an institution or group home.


Mark eventually got aggressive and almost what would be considered violent toward our little ones - I was completely shocked!! A 70 year old man, mentally handicapped or not, knows all about hurting others and that he would purposely inflict pain on a little one - deplorable!


Dw came home from work and said, “That’s it. He’s gone.” I was thankful and relieved. It took awhile to get all the details worked out and over the ensuing weeks there were two times where I had to tell Mark that if he didn’t knock it off I was going to call the police. It has been a very difficult time, needless to say.


My husband, Dw, left for Africa in the wee hours of this past Wednesday morning. He took Emma {16} and Graham {15} with him. Mark was scheduled to leave on Friday. That left just all day Wednesday and all day Thursday with me alone with Mark and the little ones. It was two of the longest days of my life. He, again, got violent toward one of our little ones – because they sat on the end of “his” couch while he was watching TV. I had to keep them away from him - completely. He was belligerent.


Yesterday morning Mark left for good. Dw and I both have had to struggle with what all of this meant. We had dreamed of this for almost 30 years - but often dreams aren’t reality – in fact they can be nightmares!! We have had long talks. I had to realize just how frustrated I have been at my mother-in-law for her parenting choices. It has been a time of soul-searching and praying that I can be a parent who raises responsible adults that when presented with circumstances that don’t go their way, they respond with grace, integrity, humility and thankfulness. I pray that our painful experience will allow all who read this to look at their parenting choices as well.


Sincerely,
Linny @ A Place Called Simplicity