But he seems so high functioning . . .

"He must be very high functioning"

"I didn't realize he was autistic"

"Oh, I forgot"

Some people may think these are things that would warm a Mama's heart. 

Evidence that the appointments, the therapy, the research, the tears, the struggle was all worth it as your little one was meeting societies norms.

After all,  what Mama doesn't  feel their heart yearn to see the little one succeed after so many struggles.

I guess I'm one of the odd ones. For every little leap of  joy my heart makes as my little guy makes  his steps forward I'm painfully aware of all the little steps happening behind the scenes, to the side, and turn us all around as we try to navigate the craziness of our son's journey with autism.  I'm aware of the meltdowns, the pain, the confusion, and the fear my little one faces in a world that is always on the go and overloading his brain with stimuli it wasn't built to naturally process.  I'm aware of  the hasty retreats to quiet, the calming down, the sensory supports, and the tears from when the effort of fitting  in with the demands of the world become too much.

With that  awareness comes sadness and concern for what my son may face because he seems  "so high functioning"

When people think of autism they think of the extremes. The child who's non-verbal and lives in their own world or the individual who lives no differently than a neurotypical peer.

But autism isn't necessarily a condition of extremes. Autism is a spectrum and one  case does not necessarily fall on the spectrum the same way as another (This comic is an awesome introduction). Our little one  can be quit the talker, laughing and yelling and having fun. However, external noise,   sensory input, and transitions can all throw him into a meltdown which is why I've become a big fan of online shopping. A large portion of his speech falls under the category of echolalia  with his relying on memorized phrases that will come out at random times and heaven help the person who doesn't know the script.

I'm honestly  thankful that people see so many sides to our little guy: his love  for music, his manners and compassion, his smile, his energy but I worry that by forgetting his diagnosis they actually do him a  disservice. By recognizing his autism you don't have to label my little guy that's a  personal choice but you do have to recognize that he may interact  differently and need different supports to reach his full, untapped potential. By denying his  diagnosis he's also denied that support and left, with us, to face the  consequences of circumstances that expect him to act in situations where he is at a  deficit. 

So what does this Mama's heart hope for?

I hope one day, instead of the "I forgot's" and the minimizing comments it becomes more common to hear "how can  we help him continue to succeed"

Sunday Spotlight

Another Sunday.

The hardest part of these posts is picking the faces, how do you choose a handful out of pages and pages of faces, sadly aware that these are just a small representation of the thousands and thousands of unseen orphans waiting around the globe.

I'm never quite sure aside from the fact that following your heart is always a good place to start.

So here are just a few of the faces that plucked at my heart this week.

 

Otto is  such a little thing for a boy who turns 9 in 2016 but oh the ripples he's created these last few weeks. Otto was one of the recipients of the Shadow Children Giveaway . As a result, Otto  has over 4700 in a grant to help bring him home. This little love has a wide host of conditions noted on his file  including FAS and autistic features. however, he also has some wonderful insight into his personality for interested families thanks to a 10 day stay at camp last summer where he apparently "came alive".

Scout will also be 9 in 2016 and look at the grin in this picture. Scout is listed as having CP as well as club feet which were corrected a few years ago. She  came to the orphanage at age 3. She's listed as a spunky little girl who is quite the talker, has self-care skills and is helpful. 

Waniya is also 9 in 2016, what a wonderful age! He file lists her as being diagnosed with Cerebral palsy; Mixed specific developmental disorders; Coloboma of optic disc. This little girl has been waiting on RR since 2012 and needs a family to call her own.

Shirley will be 12 in 2016 and has 18 months until she becomes ineligible for  adoption :( She is described as a sweet  girl who wants to be adopted and has had the concept explained to her. Diagnosed with CP, it is said to mainly affect her legs and she has received some surgery for her condition. Due to her age Shirley is eligible for an older child grant with RR of 10000.

Rounding out this week is Judith.Her file is almost as small as her grant at the moment  :( Listed  as having  Cp and dual hemiplegia.  This little girl has a smile that outshines anything else.  At only 4, the benefits of therapy and family can  not be overstated for this sweetheart.

Not everyone can adopt but maybe you can share or contribute to a grant, visit  RR and see the other children who wait, advocate, or whatever uses your strengths and abilities.

Not everyone can adopt but everyone can do something and that's how lives are changed.

Sometimes it's too late and sometimes we just need to try again

It's been a hard  few months for those who follow the  goings on at Reece's Rainbow.
The advocates, the quiet cheerers, the families, the would be families.

You see, on RR one of the big things is movement.  There are the children who don't move - the ones who sit on lists unseen as they wait for years with grants  that don't grow or  only grow during Angel Tree.

There are those that move to my family found me and slowly move from page to page until they are home with their families.

Then there are the other children who move and leave us wishing they hadn't. Children like these three.
                   

Cameron, Cristoff, and Judah who joined the 66 other children who have died while listed on Reece's Rainbow before they were able to be adopted. 69 small lives that deserved so much more.

Some children move to yet another page - aged out. These are the children who are no longer eligible in their country for adoption due to their age and immigration laws on both sides of the equation. Children of 14 and 16 who have lost their chance forever and now face a future that, statistically, is not in their favour.

My first angel tree girl. Sweet Tara

made her journey over to the aged out page this month. Though her birthday is in September it's too late to start the paperwork and, therefore, too late for her.

I was her warrior two years ago. At that point her profile was at least a year old and was  not able to be updated until the day it was moved over. Her grant grew into the thousands, 15  000 in fact and still no Mama or Papa saw her. So she waited and time ran out.

It's hard when the time runs out because it's not just a  deadline it's a child, in this case a girl staring down her 14th birthday and the realization that no one is coming. Sometimes it's just too late.

That's hard. so hard. It makes me want to run away from blogging and Reece's Rainbow and all the children who's faces I see and who break my heart in my frustration  at the system, the circumstances, and my own feeble whispers against  a world that doesn't have the time.

Did you notice I disappeared when Tara moved? 

While some  see a deadline missed or a picture moved. 

For others, it is potential lost and a young girl who's path is now set on a much harder path than seems fair and that's okay to grieve,  in fact, it's good to grieve the Tara's and the Cristoff's - to note the injustices of life  and the losses.

It's what you do with that grief and your time and there are still so many treasures waiting.