We have recently moved (yes, again) and Jordan is going to a new school. A new school means a "Move-In IEP Meeting". Now, I have only been to 2 IEP meetings all together, but I have to say they get me emotional.
If you've never been to one, here's what to expect:
You lay out your child's strengths and weaknesses to a team of professionals and as a team, you all decide on a plan of action that will best suit your child. Jordan is great at puzzles, is a quick learner, is very friendly, and very independent. One of his favorite phrases is "I got it!".
"Jordan, let me help you with that."
"No, I got it!"
His weaknesses are obvious. His speech is still practically non-existent, he drools because of oral motor weakness, and his fine motor is severely lacking. These aren't what got me all teary eyed though. That happened when Jordan's SLP, teacher, and OT started telling stories about how he acts in school.
"Always wanting to help, even when its not his turn."
"He learns so quickly!"
"He and the other girl he goes to speech with get along so well."
"His gross motor is great! He gives me heart attacks when he plays on the playground."
"He knows all his colors except gray."
"He knows all the shapes we need to learn in preschool."
"He knows all his capital letters."
"He sings and dances with the other kids in class."
"He will be going to regular Kindergarten next year, with a projected 60mins inclusion time." (That means he will be in a general education class, with a special needs teacher helping him for 1 hour out of the school day while he is still in that GenEd class. He will still be removed for speech and OT)
The kindergarten statement almost broke me down. His team seems to enjoy him so much, and the fact that he is on par with other neuro-typical kids his age in every area but speech and fine motor, makes me so happy I could cry. His attitude in school is such that he knows he can do everything the others can, and sometimes he can even do it better. He knows he is good at something, and that makes me happier than anything else I can imagine at this point. His OT just kept repeating "He is such a bright little boy and picks things up very quickly."
The Special Education Coordinator brought up the bib issue. She is concerned that next year the other kids may ridicule him for wearing it, so my plans to find/ make a viable solution for him will have to move up.
I am so proud of my son and everything he has already accomplished, I am looking forward to all the leaps and bounds that have yet to come!
I wrote this the day of Jordan's latest diagnosis. It has taken a while for me to fully come to terms with it and to share it with others.
Oh, look! Another diagnosis!
The same day we had Jordan’s MRI, we had the results. That is an awesome turnaround time (getting his Neurologist’s reports in a timely matter is a different story though). It has been determined that Jordan’s apraxia is caused by Polymicrogyria (PMG). Bilateral Frontoparietal Polymicrogyria to be exact.
(Info on PMG)
Now, no one is sure how this will effect Jordan’s development, or if it will have any effect on his cognitive ability.
Here are some other things we don’t know:
We don’t know what caused the deformity. It could be a mutated gene or cause from CMV (info here) (If I had it while pregnant
No idea if he is going to be more susceptible to TBIs or not. We wonder if it’s going to ok if he plays team sports at all.
We don’t know when the seizures will start (if at all). Probably adolescence, when all the hormones start going whack, but no one can tell us for sure
We don’t know if it’s genetic. If he decides to have kids of his own one day we have no idea if it’ll be passed down or not.
What we do know is this:
His PMG is located in the areas that manage motor control and planning for the mouth, tongue, throat (for swallowing and such) and fingers (exactly where Jordan’s trouble spots are, yay for answers!);
There is no cure for this condition, it is a congenital brain deformity and he will always have it;
Therapy can help (if not completely resolve) his apraxia and dysphagia (his swallowing issues) which seem to be his only symptoms of this rare brain condition.
Seizures are pretty much inevitable;
Jordan is a kick-ass determined little boy and will own any other diagnosis thrown his way!
Whenever one finds out their child has a disability it’s difficult, but then when you get another, more serious diagnosis, It’s almost like trudging through peanut butter mud. If you don’t keep moving and spreading your stress points out, you’re going to either sink or you’re going to lose your boots.
I just came to terms with his apraxia diagnosis, and now I learn he has a brain deformity! One that wasn’t detected in numerous ultrasounds but there were several signs leading up to now that were explained off as something else (or not explained at all).
As an infant my Bug was classified as Failure to Thrive (FTT). We supplemented with formula along with his nursing (and he was a barracuda baby too, no suckle reflex at all, he just gnawed his food out *owie*) and he caught up weight-wise by a year. The doctors were also worried about his head, though it was still growing, it was falling off the growth curve while everything else was on track. Ryan has a small head (sorry, sweetie. It’s true) and I just thought it was a genetic thing. At about 6 months, I noticed Jordan’s arms would get really tight and straight and he would zone out. I thought he was being silly until he had one of these episodes and a nail gun went off and he didn't even blink! An infant with perfect hearing not being startled by a pneumatic nail gun?! Needless to say I called his doc and got an EEG scheduled. It came back normal and he didn't have another episode again (that we saw). We are pretty sure they were absence seizures. He also only recently (like within the past year and a half) developed the “pincers grasp” which is a skill they should develop by a year old. His hands were always in fists, too.
ALL THESE SIGNS! And no one put them together. Hell, I didn't even THINK to put them together. My eldest child has a brain deformity… I just can’t see it. Dr. Shauh (Neurology of Wichita) saw it, ordered an MRI and we finally got some answers. We've got almost everything we need to speed on ahead.
He’s my little boy and nothing is wrong with him. He struggles with speech, he drools a lot, and he gets very frustrated sometimes, but he’s perfect. I couldn't imagine having a different child. Yes, I've mourned over both diagnoses. It breaks my heart knowing that he will have to struggle with things that come so easy to everyone else. He’ll have to fight through the stigma that is placed on those with special needs. He is special and wonderful and with his support system that quite literally spans the globe, he will achieve anything he wants. Stigmas and obstacles be dammed!
I find myself wondering about the future with a sort of dread and hope that can only come from parenting a special needs child. I KNOW he will make leaps and bounds with his speech, communication, eating, and fine motor skills, and I am extremely excited to hear “I love you” for the first time within the next few years. But I also wonder if all the successes and improvements he’ll make will be enough for him to live a happy and full life. I want him to keep reaching for the stars, but I also want him to know how far he has made it (when he reaches adulthood or even in his teen years).
He started in a special education preschool in February, and he is doing so well. He is thriving in school, like he was made for it! I am so proud of my Jordan! He is a resilient, sweet, sarcastic little boy and I wouldn't change him for any other in the world.
If you're a mom, you know mommy guilt. That feeling in the pit of your stomach that tells you YOU'RE the reason your kid isn't quadratic equations at 3 like all those kids in his/her playgroup. It tells you that YOU'RE the reason your child isn't as well behaved as all your Facebook friends' kids (I mean, every day is sunshine and unicorns for all those other moms, why is it that your kid makes you want to huddle in the closet and drink ALL the wine?). And if you have a special needs child? Pfft, forget it! You will examine every little thing you did from the time of conception until present day. "What did I do wrong? I didn't want to make it harder for my son/daughter! Was it that Subway tuna sandwich I had at 6 months pregnant?"
We know it's illogical. The fact is, in many cases, shit just happens. Genomes got wonky and there's nothing to do about that. As moms, we need to take care of ourselves and have a realistic view on life. We are not all powerful, we cannot control DNA or RNA or even the weather (yet), and we are not responsible for everything that happens to our children. Parenting is emotionally and physically difficult, and if it's not, you are not doing it right.
Be good to yourselves mommas. The guilt may be oppressive at times, but it's not always your fault and you can't control everything. Breathe, laugh, and put one foot in front of the other.
My son goes in for an MRI tomorrow. They are going to see if there is a possible cause for his verbal and oral apraxia. I find the mommy guilt bubbling back up. What if that time he fell off the bed when he was a newborn caused it? Or the time he rolled off the couch? and then there's the fear that they won't find any reason at all and it will forever be a congenital anomaly.
Ah, this confusing rollercoaster we call parenthood. Here's to being caught between hoping they find an answer, and fearing they will.
Apraxia. Verbal Apraxia. Oral Apraxia. Childhood Apraxia of speech. Have you ever hear any of these terms? I sure hadn't before December of last year.
Childhood Apraxia of Speech (CAS) is a motor speech disorder that first becomes apparent as a young child is learning speech. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word “praxis.” Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder. This difficulty in planning speech movements is the hallmark or “signature” of childhood apraxia of speech.
Jordan had been taking about a year of therapy at that point and the minimal progress combined with the feeding issues combined with the drooling drove me to Dr. Google. A lot of what Dr. Google suggested was apraxia. I read the list of signs and symptoms, and it sounded like someone had been spying on my son and slapped a description (or several, really) on the web for me to find. But I just looked at the signs and symptoms, I didn't bother to delve further into the rabbit hole in case I was wrong.
The next therapy appointment I asked our wonderful SLP in Oki "So I was doing some research, and would you agree that Jordan fits in the mold for apraxia?" She said yes in a very sheepish manner, which didn't ring a warning bell at the time. Now I know that her simple, one syllable answer meant years of heartache for my family and and a lifetime of struggles for my son. Soon after the developmental pediatrician on island confirmed the diagnosis, we moved to Jacksonville, NC to finish Ryan's discharge from the Corps. Between the hectic nature of moving across the world and having our second child, I was not able to get therapy started for Jordan and I didn't bother to look deeper.
He has some... feeding issues. We should buy stock in paper towels.
After miss Kylie Jaye was born I would research on my phone all about this quizzical diagnosis while I fed her.
Kylie Jaye Born: April 8, 2013
Years of therapy, neurological disorder, special education classes, difficulty in school, unable to talk with "normal" kids for years....
My baby boy was going to have such a hard time in school, and it's going to be so hard for him to make friends. He is trapped in his head, he has ideas, thoughts, stories, lies, truths and opinions all dying to get out, but they are stopped. Unable to escape. He is going to be a target for bullies and people who don't understand will snicker and talk bad behind his and our backs and I am going to need bail money!
^^^ This realization combined with post-partum hormones regulating sent me into a tailspin of sorts. I had to call my mom. My mom has been down a similar road when it came to my little brother. I knew she would have just the right words to light a fire under my ass and get me moving in a productive way. The words were something along the lines of "Yes, it sucks. Yes, it's gonna be hard. It's ok to hurt for him. But YOU are his voice, and you will have to be his advocate for the rest of your life. Finish your tears tonight, dust it off, and get back to helping your son achieve everything he wants!" I did. I cried for the heartbreak to come, and I woke up with a renewed fervor to help my son.
No sibling rivalry here! Yet...
I should note that during our crazy period of moving and adding a baby girl to the mix, I did not neglect my son. He was not put on the back burner in any way. We worked everyday with his speech and taught him new signs (we teach him ASL so we can still communicate) He made some friends in the cul de sac and we would walk to the playground every once in a while. We were only in NC for 7 months and are currently on what I like to refer to as "The Family Tour". We drove from NC to TN then to KS. Soon we will drive to MT, then CA (Maybe a stop in WA), back to KS and then to our currently undecided final destination. All the while we are teaching Jordan more and more signs and trying to help with his oral motor skills.
He loves his teddy, and asked to carry him around like I do Kylie!
He has picked up so much in such a short period of time! Since we've been in KS he has learned to sign "Can I go with Grandma/ grandpa/ dad? Please?" Along with individual words: later, beard. above, hamburger, music. And that is in the mere month we have spent here, and my mother in law has been a huge help in teaching him too. She has used ASL for years now and I am extremely thankful for all her help with Jordan (who absolutely adores her!)
After the whirlwind of this past year, I will be happy when we are finally settled in one place. A permanent home and a happy place to raise our children, surrounded by love, support and (hopefully) mountains and greenery!
I truly want to settle in a place that will be best for my children, where people are accepting and kind to their neighbors. A place that has great speech language pathologists and special education teachers that will help Jordan bloom into the opinionated, loving little boy I know is trapped inside his head.
He is happy, healthy, sweet, funny, loving, kind, crazy, reckless and ALL boy. I wouldn't have him any other way! We will get through this, and if you stumbled upon this post by searching for "apraxia" in Dr. Google (or Dr. Bing I guess) because you have received this diagnosis for your child... you can get through this too. It'll take lots of time and lots of tears, but when we are finally able to hear our child say "I love you" it will be worth everything in the world!
Word approximations in the first video and some signing and dancing in the second, Enjoy!!
Even though we were supposed to be stationed on that beautiful island for 3 years, we have been sent to Camp LeJeune, NC for my husband's medical evaluation. We should be here between 6 months and a year. Enough time for me to give birth to our second child! That's right, little Kylie Jaye Messenger is due on April 1st 2013! We have a lot of changes coming for us in 2013, and we still aren't entirely sure what all they will entail.
This will be the first time in my life that I will not be associated with the military. The prospect of being thrust fully into the civilian sector is rather frightening.
Well, since I have been pregnant, my quick wit and funny banter have left me in the dust and I am left a bumbling, emotional, mess of a woman (which is only worth while if you have a quick wit!) So instead of thrilling you all with my horrible grammar and questionable spelling, I will leave you with some final pictures I took on Okinawa. Sayonara and Merry Christmas!
BTW ladies... You face the metal pipe, in case you were wondering. AND it is near impossible to use one of these while pregnant...
The classy gentlemen of Okinawa get their coffee at Family Mart... lol.
I know I have such a LARGE fanbase (/sarcasm font) and I apologize for being absent for so long. As most of you know, we took a trip back to the states to visit family. We stayed there for just about a month and a half. Had a great time with family and friends, and some entertaining travel. I had an 11hr layover in Taipei for instance, and pretty much no money (they would only exchange cash, and I had none :-/) Because I know I have been slacking posting pictures to facebook for all to see, I will post a few of my favorites here for you all to enjoy. :-) Maybe I'll trow in a few anecdotes as well...
First: A few pretty pictures.
Ryan's aunt decorates for parties, weddings and receptions. I decided to help out setting one up and took a few pictures for her. This is my favorite.
A random Kansas storm that threw golf ball sized hail at... the town golf course. In July.
Wild Sunflowers down at the river, how beautiful!
Unfortunately California wildfires make beautiful sunsets.
Same sunset as above, just with a cholla cactus. Beautiful and painful all at the same time.
More California desert sunsets. I love my home.
Now, for mommy bragging rights, because my son is friggin adorable!
Ryan and Jordan on Jordan's first roller coaster ride. he loved it!!
Jordan on Mr Z. And in his cowboy boots too!!
Dad and son on the merry go round (mom gets sick :-/)
Riding a motor bike
This is my mother in law with her horse Mr Z. I like this one a lot (the picture, mother in law, and horse.)
He has his mother's coordination
Three generations of Messengers under one truck.
Dad told him to sit down... so he did.
Signing "airplane".
Yes, that is an escape chute... in a building... in Taipei. It goes out the window and forms a slide.
Well, it is almost 11pm here, and I wanted to type more, but as it is I need the sleep. So goodnight all. I hope you enjoyed this multimillion word post (because pictures are worth at least a thousand, right?).
Have you ever taken a look at your life and wondered: "How and the hell did I end up here?" I do it often, sometimes I can't remember how I physically ended up at a certain spot, think Donna Noble, in CAL.
"How did I end up here Dr Moon? I said fishing, and then I am by the lake"
"You walked down the stairs, through the lobby, across the courtyard to here, by the lake"
Sometimes I also wonder how I ended up an overweight stay at home mom. I don't mean to brag, but I am smart, and I used to be athletic. I had all these plans when I was in high school, get my degree, join the service, kick ass, take names, get a very sexy man to take home and eventually have a family. I skipped a few steps. I only achieved my AS, but only AFTER I got married to a sexy man, and then I started a family... Let me be honest here, I am a HORRIBLE house wife. I hate cleaning house, I am not an excellent cook (but I do it a lot), and I am a bad hostess. I know these things, and I accept them.
Fortunate for me 24 years old does not qualify me as an old woman, I still have the chance to pursue my dreams, though the order has changed a bit. Now I just have to decide on what I want to do with my life. Do I want to teach? hmmm I don't think I could handle other peoples children for a career (props to all the teachers out there, a few of you changed my life for the better)
I really want to be in law enforcement, but could my family handle that?
So, here is my quarter life crisis. What do I want to be when I grow up?
le sigh
On another, more "local", note; I love how the Okinawans squeeze their agriculture into ever space they can.
Technically, a two lane road^^ Fields on both sides
A crop with a city-scape backdrop. I love the juxtapositions like this!
And here on this tiny island, we use a lot of mirrors to drive as there are a lot of blind curves and corners.
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