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.

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.

IAC 275 Results

The following referrals were issued in IAC Session 275 which was held on February 26, 2014:

1) Spanish dossier from July 2010 referred a male child aged 1 year and 10 months

2) Irish dossier from July 2010 referred a male child aged 1 year and 8 months

3) Dutch dossier from July 2010 referred a male child aged 4 years and 2 months

4) US dossier from July 2010 referred a female child aged 2 years and 3 months with features in health status

5) German dossier from June 2011 referred a male child aged 3 years and 7 month with features in health status

6) Italian dossier from September 2011 referred a male child aged 2 years and 5 months with features in health status

7) French dossier from November 2011 referred a female child aged 8 years and 8 months

8) US dossier from July 2012 referred a female child aged 1 year and 10 months with features in health status

9) Canadian dossier from February 2013 referred a female child aged 6 years and 11 months with features in health status

10) Italian dossier from February 2013 referred sisters aged 7 years & 8 years and 4 months

11) Italian dossier from January 2014 referred a female child aged 9 years and 6 months

12) US dossier from February 2014 referred a waiting child (#2117) with a profile on the MOJ site

13) US dossier from February 2014 referred a waiting child (#2181) with a profile on the MOJ site

14) US dossier from February 2014 referred a waiting child (#2189) with a profile on the MOJ site

Sunday Sundries

Cooking: chocolate chip pancakes with fresh strawberries for brunch

Reading: Tuxedo Park: Robert Oppenheimer and the Secret City of Los Alamos

Celebrating: my kids' accomplishments

Doing: loads and loads of laundry

Feeling: happy and relaxed

Wanting: a massage

Talking: about lots of stuff with friends at the park

Once upon a time they were orphanage mates,
now they are friends living in the Midwest

Needing: more quality time with my hubby

Enjoying: Chinese take out for dinner and fudge sundaes for dessert

Watching : X-Files Season 6

All in all, not a bad Sunday by far.

Big Sister Update

Well, there is no update, really, except that by quite a coincidence we were blessed with new photos and video of our big little girl today which made us so happy.

Our dossier has been in Big Sister's birth country for six weeks.  The next meeting of the government's adoption commission is slated to take place in mid-April, so we are hoping that we will then be approved as adoptive parents and invited to visit Big Sister.   Fingers crossed.

Waiting is hard and there's not a day that goes by that we don't think or talk about our little girl thousands of miles away.  But this time around, I am also noticing how much I have grown as a person in the last three years.  I am not a pillar of patience by any means, but Rex and Emilia have taught  me a certain level of acceptance about the things I cannot change, they have taught me to roll more smoothly with the ebb and flow of life, and to stay in the moment as much as possible instead of worrying about the future.  All of these lessons have been helpful on this, our third, adoption journey.

Swings & Thanks

Last Friday, Craig took a few hours off work to go into Rex's school and help the head of maintenance hang a ceiling swing in the therapy room.  The swing equipment was purchased with money that parents raised last fall in our holiday bazaar. 

The teachers and kids are loving their new swing and made this sweet sign for Craig:

Do you see in the bottom right corner how it says, "Thanks Dad" with a heart and Rex's hand print?  Love it!  And love, love, love everyone at Rex's school.  He couldn't be in better hands.