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| My 4 precious ones... |
Saturday, October 20, 2012
Fall fun
Today we took the kids to a local petting zoo/farm/playground area and had an absolute blast! Will let the pictures speak for themselves!
Everybody had lots of fun feeding the animals! Pretty smart petting zoo - we pay to come see your animals, and then we pay to feed them for you too ;-)
Daddy was showing AG how to lasso, so lil bro figured he'd give it a whirl too (see below). Is he not the cutest thing you've ever seen!
So very blessed to be momma to my 4 blessings, and wife to my incredible husband!!!!
Sunday, October 7, 2012
Playdoh & Trampolining
The girls asked me a week or so ago if we could break out the playdoh since it had been a while... As far as we know it was JJs first time with playdoh. He wasn't too sure about the squishy stuff at first but then when he saw all the 'bits n pieces' that go with it he decided he'd play with it a bit... not his fav thing but he tolerated it ;-)
Another fav activity of ALL the kids is the trampoline. The girls resumed gymnastics classes a few weeks ago so we have been seeing all sorts of flipping and cartwheeling all OVER the place! Momma decided it was time to try and capture some of it on camera.
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| Mom, what is this!!! Take it away! ;-) |
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| Enjoying it a bit more now... |
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| AG hard at work |
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| Who knew playdoh brought such interesting facial expressions ;-) |
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| Rose blossom cake |
Another fav activity of ALL the kids is the trampoline. The girls resumed gymnastics classes a few weeks ago so we have been seeing all sorts of flipping and cartwheeling all OVER the place! Momma decided it was time to try and capture some of it on camera.
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| One of my favs... |
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| EB concentrating so hard before her flip - so cute! |
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| My 4 blessings. |
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| Seems boys have a hard time sitting still ;-) |
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| JJ was really all done with picture taking and wanted to jump! |
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| Precious daughters! |
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| We even got Hubby on the tramp! |
Thursday, October 4, 2012
Hidden Disabilities
Parenting is not easy (says this wise & experienced momma, ha ha, whose eldest is a mere 7 years old ;-) ) but when you add hidden/non-visible needs to the mix it is a whole different ball-game, requires a huge shift in parenting paradigm - something I am trying hard to make, but am not sure how well I am doing.
One of our precious children has a genetic condition, a chromosomal deletion, that not only has physical manifestations but also comes with a whole host of 'non-visible' components (learning disabilities, anxiety, autism spectrum, impulsivity, social immaturity, working memory problems, OCD, & ADHD just to name a few). This deletion is a 'spectrum disorder' which means that our child may have all 180 of the manifestations and all to the nth degree or they may have 2 of them which are mild in presentation. There is no textbook, or Dr, or class, that can tell us what to expect, how to deal with the challenges, how these things will impact our child and to what degree they are present... so we are doing our best to roll with it, to be aware of the potential challenges and try to respond accordingly when they are presented... and then there are days/seasons like now when it is just plain hard.
I feel like I am constantly trying to discern 'was this behavior deliberate? was it related to the deletion/lack of comprehension/working memory/anxiety etc etc? were my expectations inappropriate/unrealistic?' all so that I can respond appropriately in the moment to my child and the behavior issue we are having... And then there are times when I'm in default mode, parenting the old way where my thinking is 'they are old enough, they should be able to do this/know better/follow instruction!' and I don't take into account the hidden needs, which is just so wrong. I'm learning that expecting what is not possible is unfair. You wouldn't ask a child with a broken leg to perform on the high-wire at the circus, that would be impossible/setting them up to fail... which is what I inadvertently do all the time with my child with hidden disabilities, or even worse, discipline my child for not doing something that they weren't yet capable of doing in the first place! Yet at the same time you wouldn't assume that just because a child is sitting on the ground that they cant walk... so you try to teach them to behave/respond in the right way - to be kind and caring, to show respect to others, to obey/follow instructions, to be honest etc.
This is the tension, trying to determine what expectations are to be expected because they are attainable and realistic and which others (while age appropriate) are not possible for my child and if I persist in expecting them is like butting my head against a brick wall...and the fear that if my child cant learn these things that they will have repercussions in their life - which are not consequences of intention but the result of the way their brain works. Thats the kicker with hidden needs - my child appears as if they get it all, that their brain is functioning typically but not everyone that my child interacts with knows and understands their uniqueness/their needs (something I am still trying to figure out!)... There are those who have been made aware of it that cant seem to respond with exception but insist on pounding the square peg into the round hole :( For example, I know that my child has a very hard time with impulse control (which manifests itself in MANY different ways), so we make exceptions for that/try to work on it but we understand that it is a big issue. Others who aren't aware of that are less accommodating when our precious one is not able to stay on their own rest mat at school, but persist in rolling around and talking loudly, seemingly disregarding the teachers instructions to be quiet and still (yep, got kicked out of school for that one- even with the needs known & explained, but because its not visible...) Or how about when our sweet one interrupts their teacher constantly after being given numerous (hundreds!) reminders to raise their hand and wait to be called on, and yet they still cant do it so they get disciplined for interrupting, appearing to be rude and disobedient, not following the rules of the classroom... But yet I understand the teachers dilemma because I face it every day at home! How do you make it all work? make allowance for the child with the hidden needs yet at the expense of the others who can't rest because of the loud child who is all over the place?
It is so hard when the external appearance is that of a person whose brain functions normally and can comprehend whats been said and respond appropriately - but what is happening on the inside is completely different.
Appreciate prayers in this parenting marathon for incredible wisdom, discernment, patience, creativity, and lots of love because there are days when it is *so* hard.
One of our precious children has a genetic condition, a chromosomal deletion, that not only has physical manifestations but also comes with a whole host of 'non-visible' components (learning disabilities, anxiety, autism spectrum, impulsivity, social immaturity, working memory problems, OCD, & ADHD just to name a few). This deletion is a 'spectrum disorder' which means that our child may have all 180 of the manifestations and all to the nth degree or they may have 2 of them which are mild in presentation. There is no textbook, or Dr, or class, that can tell us what to expect, how to deal with the challenges, how these things will impact our child and to what degree they are present... so we are doing our best to roll with it, to be aware of the potential challenges and try to respond accordingly when they are presented... and then there are days/seasons like now when it is just plain hard.
I feel like I am constantly trying to discern 'was this behavior deliberate? was it related to the deletion/lack of comprehension/working memory/anxiety etc etc? were my expectations inappropriate/unrealistic?' all so that I can respond appropriately in the moment to my child and the behavior issue we are having... And then there are times when I'm in default mode, parenting the old way where my thinking is 'they are old enough, they should be able to do this/know better/follow instruction!' and I don't take into account the hidden needs, which is just so wrong. I'm learning that expecting what is not possible is unfair. You wouldn't ask a child with a broken leg to perform on the high-wire at the circus, that would be impossible/setting them up to fail... which is what I inadvertently do all the time with my child with hidden disabilities, or even worse, discipline my child for not doing something that they weren't yet capable of doing in the first place! Yet at the same time you wouldn't assume that just because a child is sitting on the ground that they cant walk... so you try to teach them to behave/respond in the right way - to be kind and caring, to show respect to others, to obey/follow instructions, to be honest etc.
This is the tension, trying to determine what expectations are to be expected because they are attainable and realistic and which others (while age appropriate) are not possible for my child and if I persist in expecting them is like butting my head against a brick wall...and the fear that if my child cant learn these things that they will have repercussions in their life - which are not consequences of intention but the result of the way their brain works. Thats the kicker with hidden needs - my child appears as if they get it all, that their brain is functioning typically but not everyone that my child interacts with knows and understands their uniqueness/their needs (something I am still trying to figure out!)... There are those who have been made aware of it that cant seem to respond with exception but insist on pounding the square peg into the round hole :( For example, I know that my child has a very hard time with impulse control (which manifests itself in MANY different ways), so we make exceptions for that/try to work on it but we understand that it is a big issue. Others who aren't aware of that are less accommodating when our precious one is not able to stay on their own rest mat at school, but persist in rolling around and talking loudly, seemingly disregarding the teachers instructions to be quiet and still (yep, got kicked out of school for that one- even with the needs known & explained, but because its not visible...) Or how about when our sweet one interrupts their teacher constantly after being given numerous (hundreds!) reminders to raise their hand and wait to be called on, and yet they still cant do it so they get disciplined for interrupting, appearing to be rude and disobedient, not following the rules of the classroom... But yet I understand the teachers dilemma because I face it every day at home! How do you make it all work? make allowance for the child with the hidden needs yet at the expense of the others who can't rest because of the loud child who is all over the place?
It is so hard when the external appearance is that of a person whose brain functions normally and can comprehend whats been said and respond appropriately - but what is happening on the inside is completely different.
Appreciate prayers in this parenting marathon for incredible wisdom, discernment, patience, creativity, and lots of love because there are days when it is *so* hard.
Tuesday, September 25, 2012
Drs here, Drs there, drs drs everywhere!
So it feels like we've been at the Drs far too much lately, which is probably because we have! CC had an eye appointment because of some squinting and other vision issues (thankfully no glasses needed yet!). Then EB had follow-up appointments with ENT and Audiology... results stating that she has mild conductive hearing loss in her R ear, buuuuut its not affecting her hearing. Wait, what???? Yep, long story but we're following her ENTs recommendation and NOT getting tubes for her right now but continuing to monitor things. Then JJ had his first bout of sickness since coming home. Poor boy managed to swing it on his birthday :( so he went to the ped and had breathing treatments for his wheezing/respiratory infection :( and then he had to go back 3 days later for more meds (and his 2 yr well check?!?! cept, he wasn't that well so will go back in a month for the shots that we withheld this time)... and since we hadn't been enough EB had her asthma follow-up at the ped, with a change in meds for her... and then JJ had to go back to the ped because his wheezing wasn't getting better (and then had to get a chest x-ray). All that in the last 14 days... barring any complications to JJs wheezing (which is getting better) we will take a break from our drs visits for a good 5 days and then take EB back for another consult on her palate, trying to determine if she does need to have a VPI repair.
Ok, all done whinging about the appointments now :) Am so grateful for health insurance which is paying for all of this, and for sweet ones who are mostly healthy, and for wonderful drs who are good at what they do and really care about my little ones... This really is very unusual for us to have this all going on at once but hopefully we will be done for a while - after this next VPI appt, and then the well check shots, and then another asthma follow up, and then another follow up with the plastic surgeon who repaired JJs palate... you get the picture ;-)
And now a pic of sweet JJ getting his breathing treatment at our peds office because a post isnt complete without pictures right???
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Ok, all done whinging about the appointments now :) Am so grateful for health insurance which is paying for all of this, and for sweet ones who are mostly healthy, and for wonderful drs who are good at what they do and really care about my little ones... This really is very unusual for us to have this all going on at once but hopefully we will be done for a while - after this next VPI appt, and then the well check shots, and then another asthma follow up, and then another follow up with the plastic surgeon who repaired JJs palate... you get the picture ;-)
And now a pic of sweet JJ getting his breathing treatment at our peds office because a post isnt complete without pictures right???
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Friday, September 21, 2012
Birthday boy
Last post was heavy on words, this will be heavy on pics... so without further ado, the boys 2nd birthday... Poor boy was not feeling well, chose his birthday as his first sick time since getting home :( but we've been to the doc, got some meds and are hopefully on the mend now...
A little 'guy dancing' going on in the background here...
Sweet boy is all about his cars right now, so we had to get him some car candles :)
Mmmmm, angel food cake
A little 'guy dancing' going on in the background here...
I saw momma doing this and it made it all big... wonder how this works??
Sit still??? I just cant! I love tossing my balloon too much to sit still!
Opening his first present from sisters.
Woo-hoo! Trains!!!
Making some train sounds here... SO so precious!
Thanks Grammy & Pop-pop! He loved his clothes and new cars!
Quality car crashing time with Dada!
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