Wednesday, April 30, 2014

IAC 278 Results

The following referrals were issued in IAC Session 278 which was held on March 26, 2014:

1) Spanish dossier from July 2010 referred a male child aged 5 years and 6 months

2) German dossier from December 2010 referred a male child aged 1 year and 8 months with features in health status

3) French dossier from February 2011 referred a female child aged 1 year and 8 months with features in health status and a family history

4) Italian dossier from December 2011 referred a male child aged 1 year and 8 months with features in health status and a family history

5) French dossier from March 2012 referred a male child aged 5 years and 1 month with features in health status and a family history

6) US dossier from July 2012 referred male twins aged 6 years and 9 months with a family history

7) Italian dossier from August 2012 referred a male child aged 9 years and 1 month

8) US dossier from November 2012 referred a female child aged 2 years and 5 months with features in health status

9) Irish dossier from December 2012 referred a male child aged 2 years and 2 months with features in health status

10) US dossier from September 2013 referred a male child aged 1 year and 4 months with features in health status

11) French dossier from November 2013 referred a male child aged 4 years and 8 months with features in health status and a family history

12) Canadian dossier from December 2013 referred a male child aged 1 year and 1 month with features in health status

13) US dossier from January 2014 referred a female child aged 9 years and 7 months

Tuesday, April 29, 2014

The Joy In Our Boy


Pure. Simple. Unparalleled.

Saturday, April 26, 2014

Nap Time Selfie

If Rex could (or would) speak, I am sure that every single day he would say, "Daddy, I love you so much.  You're my best friend and my favorite person in the whole wide world.  I never want to be without you."

But then again, words are quite unnecessary.


Wednesday, April 23, 2014

IAC 276 & 277 Results

The following referrals were issued in IAC Session 276 which was held on March 12, 2014:

1) Dutch dossier from June 2010 referred a male child aged 2 years and 4 months

2) Spanish dossier from July 2010 referred a male child aged 5 years and 11 months

3) US dossier from December 2010 referred a female child aged 2 years and 5 months with a family history

4) Italian dossier from June 2012 referred a male child aged 8 years and 9 months

5)  Italian dossier from October 2012 referred three waiting children (#2353 & #2354 & #2355) with profiles on the MOJ site

6) US dossier from November 2012 referred a female child aged 1 year and 9 months with features in health status and a family history

7) French dossier from December 2012 referred three children, male twins and their female sister, aged 6 years and 1 month and 7 years and 7 months

8) US dossier from March 2014 referred a waiting child (#2244) with a profile on the MOJ site

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The following referrals were issued in IAC Session 277 which was held on March 19, 2014:

1) Greek dossier from March 2010 referred a female child aged 5 years and 5 months

2) Spanish dossier from June 2010 referred a female child aged 2 years and 2 months

3) German dossier from July 2010 referred a male child aged 4 years and 7 months

4) Canadian dossier from July 2010 referred a male child aged 3 years with features in health status

5) Swedish dossier from November 2010 referred a female child aged 1 year and 10 months with features in health status and a family history

6) French dossier from January 2012 referred a brother and sister, aged 3 years and 2 months & 5 years with features in health status and a family history

7) US dossier from June 2013 referred male twins aged 2 years with features in health status and a family history

8) Italian dossier from September 2013 referred two brothers aged 6 years and 2 months & 7 years and 2 months with features in health status and a family history

9) US dossier from February 2014 referred a brother and sister aged 4 years and 10 months & 6 years and 4 months with features in health status

10) Italian dossier from March 2014 referred a male child aged 9 years and 9 months

11) US dossier from March 2014 referred a waiting child (#2227) with a profile on the MOJ site

12) US dossier from March 2014 referred two waiting children (#2142 & #2143) with profiles on the MOJ site


*Something I have wanted to mention for a while: When we look at the referral results, it's easy to assume that these families are now happily matched and removed from the dossier wait line.  However, there are inevitably referral declinations which, in most cases, means the dossier returns to its place in the line. For example, from IAC Session 271 to IAC Session 275, the council had to re-examine the files of 12 children whose referrals had been declined by their prospective families.  By my estimate, this means that on average 10-15% of all referrals are declined.

Tuesday, April 22, 2014

Easter 2014 In Photos

 Here are some photos from Easter, in no special order.

Community Easter egg hunt...
people were so greedy
that neither of my children got a single egg.

We spent 24 hours with friends.
Andy playing Kindle guitar for Emilia.

Our little sunshine.



Emilia and her friend N...
once upon a time they lived at the same orphanage.

Easter Sunday with our local Bulgarian community...
they love to dance.

Emilia and N getting into the action.

Emilia and I hunting some more Easter eggs.

So lovely.

So handsome.

If all goes well, next Easter we will have a third beautiful photo to add here of Big Sister.

Thursday, April 17, 2014

Easter Eggs The Armenian Way

For most holidays, I try to find a way to incorporate something from at least one of the kids' cultural heritages.  Last year for Easter I made a traditional Bulgarian bread called Kozunak and this year I decided to die eggs as is done in Armenia.

I found the instructions and went to work.

Step 1: Clean out the onion skins from the bin at my supermarket.  Since I am fortunate enough to shop at a very clean grocery store, this took two trips.  Yep, I can be that person, I have no shame when it comes to certain things.

Step 2: Boil the onion skins in water for about 15 minutes, then let the mixture sit for about ten hours.



Step 3: Prepare the eggs by placing cilantro leaf designs onto them and wrapping them into pantyhose (3 pairs of knee highs for a buck from the Dollar Store did the trick).



Step 4: Put eggs into the cool onion skin water and boil.  Then remove pot from burner and allow the eggs to cool in the water.

Step 5: Remove eggs from water and release them from their nylon wrapping.  I took my eggs out a little bit staggered, hoping for different shades in color.  Some of the leaf designs came out better than others and that's okay.  These eggs aren't mass-produced, they were died by a frazzled, multi-tasking mom.



Step 6: Polish eggs to a shine with sunflower oil.



Step 7: Enjoy beautiful Armenian-inspired Easter eggs.



If you want to try this at home, I recommend using only the sturdiest cilantro or parsley leaves as they will hold up best to the boil and wrapping your raw eggs as tightly as possible.

Happy Easter, everyone!

Monday, April 14, 2014

The Happy Dance

Our little family just did the happy dance in the kitchen.  Yup, all four of us jumping up and down, squealing, arms in the air...

We got our approval to adopt from Big Sister's birth country.  Travel dates should be forthcoming soon, so it won't be long now until we meet our lovely girl.  Hooray!

Friday, April 11, 2014

Best. Sentence. Ever.

Spoken by my daughter this afternoon,  "I Mama hug."

You bet she got herself a hug and then some.

Love her so much.

Potty-Training Miss E

I have tried three times to potty-train Miss Emilia.  The first time was in March 2013 and it was an epic fail.  She just screamed and squirmed when made to sit on the toilet and I figured she just wasn't ready yet.  The second time was in September 2013 when she loved sitting on the toilet for extended periods of time, but would never ever do any real business there.  For that, she got off the toilet and laid down in our changing area to await a new diaper.  So again, she did not seem ready.  Knowing that Emilia would have to wear diapers after her heart surgery, I decided to postpone my next attempt at potty-training until the hospitalization and recovery period with physical restrictions were behind her.

So, on March 10 of this year, we embarked on our third potty-training journey.  The first two weeks it didn't seem like we were getting anywhere fast.  She had some success on the potty, but there was no consistency.  However, it helped us introduce some words and signs as well as routines associated with the process, so we were making progress in that regard.  Unfortunately, a nasty and quick stomach virus went through our family one by one in week three of potty-training, so the endeavor was put on hold.  I figured I would be starting at nearly zero again in week four, but surprisingly, week four brought a break-through.  Emilia all of a sudden seemed to recognize the urge to pee and was able to do it on the toilet.  Of course, we had some accidents, but when left in no diaper or underwear or pants, she was incredibly consistent almost all at once in using the bathroom.  After two good days, I decided to put her into undies around the house and she pretty much continued with letting me know when she had to go #1.

Encouraged, by two more good days, I went from just undies to undies and pants.  Oh my goodness, did we  ever have a crazy day of one accident after another.  I kid you not, I think we changed outfits half a dozen times before noon that day.  But again, it seemed like a learning experience for Emilia as she would look down at herself and not like the feeling of being wet.  It was obvious that she was disappointed in herself, too.  To make her feel better and help her succeed, we went back to just undies at home.

Of course, we aren't always at home where a bathroom is constantly nearby, so for any outings we still put Emilia into diapers.  Then last weekend, she began telling us she had to go #1 even with the diaper on.  She pretty much no longer wanted to go into her diaper, so that was another exciting step forward.  There were some shorter outings where she arrived back home in a dry diaper and then immediately asked to use the bathroom.  During some longer times away, she successfully used public restrooms.

With all the wonderful #1 progress, Emilia does still want a diaper for #2 and I understand that's not uncommon.  She typically takes care of this business first thing in the morning and/or last right before bed, so it's pretty easy... though not to say that I haven't had to clean up a few poopy outfits.  And of course, we do still use diapers during nap and at night.

Over the last few days Emilia has worn pants with no undies at home and been accident-free.  Yesterday we tried both undies and pants again and voila, no accidents for #1.  She tells me, "I peepee" when she has to go.  I am immensely proud of her quick progress with this process though I know we may experience setbacks as we go on and are a long way from being fully potty-trained yet.

One interesting aspect of this adventure has been how Emilia has processed the change.  We tell her she is a big girl when she uses the toilet and many times over the last few weeks she has asked me if she is a baby.  I think she is trying to make a distinction.  She has also been asking for even more hugs and cuddles than she typically does, so I believe she is looking for affirmation that giving up diapers does not equate to giving up snuggles and being, as we say in German, the Nesthaekchen of our family.  No worries, sweet pea, you will always be our little girl.

Wednesday, April 2, 2014

Living With An Invisible Disability

Rex has an invisible disability which means if you take only a casual glance at him, he will appear typical.  On a good day to an untrained eye, he may even appear typical upon a longer look.  However, just because his disability is not immediately obvious doesn’t mean that Rex is any more or less disabled than, for example, a child who is blind, a child with Down Syndrome, or a child in a wheelchair.  Having any kind of disability means that a person is differently abled and faces certain concerns, limitations, and challenges on a daily basis.

So what does life look like with Rex’s invisible disability?

Our own home is set up for a child that does not recognize danger to himself or others nor understands the destructibility of objects as well as struggles with sensory regulation.  We have two locks on our fridge, two on our stove, locks on all drawers and cabinets, and a flip lock on almost every door in our home, including those for closets.  Our fire place door has been zip-tied for years.  We have removed shelves to avoid climbing and have long said our good-byes to potted plants, most decorative wall hangings, fragile objects, candles, coffee tables, and more.  We have built a PVC pipe structure that’s covered in layers of blankets known as the nap cave so that Rex can have the complete darkness he needs to sleep midday.   We own three trampolines, two indoor swings, two tent tunnels, two Rodys, and three chew tubes.  And you know what, all of that is okay with us, it makes our lives safer and easier and our son is worth it.  Plus it’s no different from the parent of a deaf child installing a visual smoke alarm in his or her bedroom.

My son may not need a ramp or a guide dog to access a public building, but, on a bad day, he does need to wait until each and every door closes behind him as he moves through said building.  On a worse day, he needs to repeatedly open and close any and all doors on his path.  At Rex’s school parents and staff alike are no strangers to fire alarms being pulled just because it’s a lever or a student simply lying down in the middle of a stairway and refusing to move any farther.  Don’t assume that the absence of a hearing aid, crutches, a cane or a helmet mean that a person faces no limitations in the way he or she navigates a space.  There are public places and situations, like eating at restaurants, we avoid whenever possible because Rex’s needs do not mesh well with these settings. 

Some people may think that a relatively invisible disability is easier to handle than one that’s apparent at first sight.  But, until you have been repeatedly pinched or hit by your child, have seen him pull clumps of hair from his sister’s head, have thrown away the dozens of broken things (scales, lamps, plates, windows, toys) or have cleaned up an entire meal from the floor… until you have entered the decade long wait list for state waivers in anticipation of the fact that your child may need to be diapered as an adult or need to live in an assisted facility… until you have called a hotel front desk and asked them to remove lamps and tables from your room… until guests leaving your home after a few hours of visiting have asked you if you are in a support group… until you have been informed by doctors that your child will never speak, read or drive… until family members and friends have told you it’s too difficult and stressful for them to be around your son… until then, don’t discount what it means to care for invisibly developmentally disabled persons and to help them live in our society. 

I don’t delude myself into thinking that Rex can do anything, that the sky is the limit for him.  It simply isn’t.  He is not going to have a life like his neuro-typical peers.  But that doesn’t mean that I don’t have dreams for him, that I won’t continue to push him to work hard so he can reach his fullest potential, or that I am not hoping for so many little miracles to make his life and ours less challenging.  It also doesn’t mean that I am going to let him make excuses or feel entitled.  We don’t expect that society will cater to him.  Disability is a part of who Rex is, a part of his story, and we are going to approach it with acceptance and resilience.  We could wallow about the things that aren’t and that won’t be or we can choose to live our whack-a-mole normal joyfully every single day. 

If you want to share in our particular kind of joy, our door is open and we welcome you.