The Illness Monster Strikes Again

Life as Ian's mother is never dull.  Never ever ever.  Shortly after Evie was born, Ian developed a little cold.  I ignored it, kids get sick all the time, right?  Besides, when is Ian not developing some new medical drama?  We used to call him patient zero, but now we've just changed his name to Job.  (He really needs one of those plastic bubbles to walk around in.  I think I'll see if Amazon.com stocks them.)  I ignored it for so long, in fact, that two and a half months later, his dripping nose and tired attitude were just another part of daily life.  Then of course, his teacher said something.  I went to pick him up, unaware that she was going to point it out and that I was going to feeling dumb that I hadn't taken his nasal situation more seriously. 

She suggested that he might have allergies.  I considered this, and thought it might be a good reason to finally get rid of our cat (I love the cat, but I don't love the cat hair.  Please don't hate me!)  I knew it wasn't allergies, or at least, I thought I knew, and suggested it might be a sinus infection, given it's duration. 

And then I made an appointment with our family doctor.  The PA took one look at him, "I think he has allergies.  Oh, yes, he has allergy shiners under his eyes.  Oh, and the mucous!  Yes, allergies."  Gulp.  Noooo!  Our next step was to take him to the hospital to get his blood drawn.  I won't even go into the details of that experience.  Okay, actually, I will.  While I held Ian in my lap and tightly wrapped my arms around his little body to hold him still, a nurse sat in front of him and held his legs down as he tried to kick her.  Then another nurse poked him with the needle as he was screeching and hollering and squirming, but as soon as that needle went in, he stopped, looked down at it, and suddenly became ultra fascinated with the whole process. Go figure.  A nifty bandage and a teddy bear later, Ian was proud of his battle wound and let everyone know it as I took him out for ice cream. 

Fast forward to the next week, I met with an Ear Nose and Throat specialist.  He took one look at Ian.  "No, I don't think he has allergies.  I'm convinced it's a sinus infection."  Honestly, please don't tell me that because that invalidates the entire blood-drawing experience.  And it also means I have to keep my cat.

The ENT looked at Ian's blood results and confirmed his suspicions.  "Nope, no allergies, not at all.  I say sinus infection.  Let's get him an x-ray." 

Now an x-ray?  This is Ian we are talking about and he is going to be skeptical of everything we do to him medically.  Negotiating him into the x-ray chair was like trying to negotiate the ring from Gollum in Lord of the Rings - "my precious". 

With enough convincing and bribing (the catering really needs to stop) Ian agreed to let them "take a picture of his head" which then in turn confirmed the sinus infection.  But not just any sinus infection.  A SEVERE sinus infection, as with all things that have to do with Ian.  The answer?  6 whole weeks of antibiotics.  The drug companies should be happy.  And Walgreens too.  If the antibiotics don't work, then surgery is the next option, and something tells me that we'll probably have to do that too.  Just because that's how life is as the mother of Ian.

So we are currently taking care of that, thinking the craziness of Ian's issues might die down for a little while until I went to pick him up from school last week.  His teacher stopped me and asked me if I've noticed that he sometimes has "staring spells."  I'm sighing as I type this because yes, I have noticed the staring spells.  I just thought they were normal.  But she suggested that he might have seizures.  So now I'm off to find a pediatric neurologist within our network (will have to travel out of town for that) to evaluate Ian and hopefully rule out absence seizures.

Anyone else out there have a child with apraxia and seizures?

The only real winner in all of this medical drama is the cat, who is sitting happily curled up in my lap, totally unaware that I was ready to give her the boot just weeks ago.

Tantrums and Bear Hugs

Ian got hit on the playground two days ago.  It happens, no big deal.  Then he hit the kid back.  Kids do that to each other, you know?  Then boys boys got into trouble.  The other boy handled the discipline well.  Ian... not so well.  He threw a fit.  We're talking a full-blown-take-no-prisoners kind of a fit.  Yep, that's my kid.  His teacher called me to say that she didn't dare put him on the bus because he was so angry and upset.  She asked me to come get him.  Problem was, I had just jumped out of the shower after spending a relaxing, peaceful morning sleeping next to sweet little body of my new baby girl (yes, she's here!  Born on Nov. 10th and weighing in at a whopping 9 lbs!)

Because I had to still get ready and then make the 25 minute drive over to his school, I decided to call my friend, Megan, to go pick him up.  She lives like, a mile from the school (thanks Megan!!)  Next thing I know, we have a meeting with the school counselor for the very next day.  At first, I thought this sounded like a great idea.  But then I remembered that I'd just had a baby, and we all know how much people like to blame a child's unruly behavior on the new baby.  Suddenly, I didn't think this was such a good idea. 

Nevertheless, my husband and I went in to the meeting and were surprised to find not only the counselor, but also his speech therapist from the school and his teacher.  They talked about his fit (I didn't need to see the fit to know how it all played out) and his behavior with the other kids.  We actually got 10 minutes into the discussion without the mention of the new baby. 

And.... then it happened.  "Ian's stuttering is getting a lot worse.  It started to get worse after the baby came."  That was from his teacher.  I sighed internally.  Here we go.  I didn't want to get all defensive, but I do know for a fact that Ian's stuttering was getting worse before Evie (the baby) came.  Thankfully, the speech therapist didn't seem to back that up.  Everyone just kind of blew the statement off.  Score!  I didn't need to get defensive. 

Another area of concern: Ian's bear hugs.  Seriously, this is a real issue.  Try not to laugh, okay, go ahead and laugh because it's frickin' hilarious, but Ian is the class bear hugger.  And apparently, the kids don't like it.  "He hugs the kids too hard.  We had to tell him to stop," says his teacher.  Am I the only one that finds this completely adorable?  I mean, she's not telling me "he hits the kids too hard".  She's saying that he hugs them too hard.  Now that's passionate affection right there, my friends.  The kid loves his classmates!!  Okay, fine, so Ian needs to stop hugging his classmates, easy enough.  What's the next order of business?

We went over his speech and what he's been doing with the therapist, we talked about how he's doing academically (and he's doing great!!  loud applause) and then we talked more about his behavior.  This is the area that the teacher feels like he needs the most work in order to get ready for first grade.  I tend to agree.  Before I knew it, his teacher had his IEP spread out before her and started going over our previous goals.  She decided to add some behavior goals and the school counselor agreed to start taking Ian out once a week to work with him. 

The school counselor seemed really cool.  Mainly because she agreed to email me weekly after each session with him to let me know what they worked on that day.  She's one of those people that know how important it is to keep the parent updated.  I like her.  I think I'll keep her. 

Overall, the meeting went well and I was happy with the outcome.  We also added into the IEP that we are going to start sending Ian to afternoon kindergarten (in addition to his morning kindergarten) in March at his school for next year to get him used to the kids that he will be going to first grade with.  Isn't that great?  His teacher sees no reason to hold him back and make him go to kindergarten for another year because he's doing so well academically.  That's music to my ears!

Stuttering - a strange celebration.

Most people cringe when they have a conversation with an excessive stutterer.  Mostly because it's hard not to feel sorry for the stutterer as he/she struggles so hard to get the words out.  Instead of trying so hard to get certain words out, Ian used to grunt in place of the word so he just wouldn't have to try and say it.  It used to go something like this "Mama, uhn uhn me uhn peetie butter sannich?"  Yeah, no wonder people would turn to me helplessly when he'd ask a question. 

Over the summer and since the beginning of the school year, we've been working on sentence contruction and inference.  So, for example, his therapist would show him a picture and ask him, "Ian, what is the girl doing?"  Of course, he'd try to respond with as few words as possible.  He'd simply answer something like, "Sleeping."  That kind of an answer would have been okay a year ago, but we know that he's capable of more.  So we'd push for a sentence.  We'd make him start out with saying "the girl is..." then add her action.  In the beginning, it sounded more like "Girl uhn uhn sleeping."  But not anymore.  Now he can say the whole thing : "The girl is sleeping."  The only thing is, getting out all of the right words takes a lot of concentration on his part.  So that's where the stuttering comes in. 

A typical sentence from Ian now goes like this, "Mama, mama, mama, mama, mama, IIIIIIIIIIIIIIII want peetie butter jel-jee sandwich."  Sometimes, when he starts in with the mama, I have to work so hard keep the patience.  He repeats mama so many times because he is trying to think of his next word, so until he thinks of it, he just keeps saying mama really fast.  So our conversations go at a super fast pace in the beginning: "Mama" "yes?" "mama" "yes?" "mama" "yes, Ian?" "mama" then I just smile and wait for him to get through it.  Normally when he thinks of the next word, he really really struggles to get it out, and he creates really long sounds within words.  So the word "I" is drawn out to one long syllable like "eyyyyyyyyyyyyyyyye."  I hope that makes sense.  The muscles in his mouth and neck also tighten up as he draws the sounds out, almost like he's trying to end the sound, but he just can't and sometimes it even looks painful. 

Anyway, I said all that to say this - I celebrate the stuttering.  To me (and to his therapist), the stuttering means progress.  It means that he knows what to say and he is going to try his darndest to say it.  Just seeing where he is now compared to two years ago literally brings tears to my eyes.  And the great thing about Ian is that he doesn't get frustrated by his stuttering, it's almost as if he doesn't know he's doing it.  He just pushes along and works terribly hard at getting his words out and doesn't seem embarrassed at all by the end result. 

I am grateful that he is in a classroom with other kids with disabilities, so he has a very safe environment to practice his words in.  I've noticed that when he gets around other kids that talk normal and don't know him, they look at him funny or make fun of him, or just get downright uncomfortable with his speech.  It's not really their fault, they don't understand what he's had to go through to get this far.  Ian doesn't let that bother him though.  He just keeps on talking.  He is very social and has no qualms about going up to an unfamiliar child and asking him/her to play with him.

Sometimes my heart does break when I see other children get uncomfortable around his speech, as their eyes dart side to side, trying to figure out how to deal with him, and sometimes I'll feel the tears burning behind my eyes.  But when I see Ian so unaffected by it and his persistence to be heard, I then start to feel a surge of pride.  That's my boy.  And he has been heard. 

Good news from the new teacher

I am so happy and impressed with Ian's new kindergarten teacher.  Apparently, she was really sensitive to the fact that I prefer to keep informed on Ian's behavior in school.  He has been in school for one week and when the phone rang this afternoon from his school, I have to admit that my heart nearly stopped.  I was sure she was going to tell me how rotten Ian can be and that they've been struggling with him.  Not so!  She called just to tell me how well he's doing!

She said that he had two episodes last week where he cried and threw a fit because he didn't get what he wanted, but they're just being firm and letting him learn the boundaries.  I breathed the biggest sigh of relief.  She said that the hardest times for him are the times when they transition from one activity to the next (isn't that hard for all kids though?), but he's just testing the boundaries and learning where they are. 

What an awesome report!  And I'm starting to have confidence in this teacher's ablility to deal with his behavior.  As far as the bus goes, Ian has thrown a few fits when I've tried to get him on the bus.  After a phone call to the bus driver one particularly bad morning, she informed me that Ian only has a hard time when he's separating from me, but once he's on the bus, he's a total angel.  So I started having my husband take Ian out to the bus and we haven't had a problem since.  I'm leary about feeling totally positive this early into the school year, but I can't help the small bubble of hope building up inside of my chest... could we really have a good year?

Ian is also still taking piano and my oldest daughter, Allie, has decided that she wants to learn the piano as well.  Ian has watched Allie practice and that has encouraged him to get on the piano and practice too. 

Speech therapy is still going well.  His therapist was able to squeeze us in for private sessions once a week during the school year. This session combined with the session he will be getting from the school district is sure to propel him leaps and bounds forward into his speech journey. 

I have a video of Ian at therapy using his "words" and I will try to get it loaded up in the next post.

If I ruled the insurance world.

If I ruled the insurance world from the view of a parent of a special needs child.

First of all, I would get rid of the Apraxia Division.  You know, that little office with insurance employees sitting around following the three rules as described at this link.  And chances are, those 4-5 employees of the Apraxia Division have always hated their job, so I would rename it the Apraxia Superhero Division.  I would allow them to wear capes and tights and their new three rules would be as follows:
1. "Do everything you can to support a claim."
2. "Understand that even though the insured's Speech Apraxia may not have been caused by some sort of obvious trauma, speech therapy is still imperative to the individual's ability to progress and overcome the mountain of challenges that Apraxia bestows upon him/her."
3. "When a claim is sent in for speech therapy, a card of gratitude must be sent out to the parents or guardians thanking them for their support and intervention on the child's behalf to get them the help that they cannot ask for themselves.  With this card, a sheet of stickers must also be sent, because all kids like receiving stickers.  The stickers will read '(insert insurance company name here) supports Apraxia Awareness', and a smiley face will adorn each sticker."

I would paint the walls in the office yellow (a very happy color) and put a cold lemonade dispenser in the corner of the room.  I would also decorate the walls with photos of children that have overcome Apraxia with the help of the speech therapy that the insurance paid for. 

The second thing I would do is apply these three new rules to all of the other nasty denial divisions that I suspect the insurance company of having.  The employees in the other divisions have the option of wearing capes and tights as well.  Heck, I'd even let them wear masks if they liked that sort of thing.

I would change the music that plays when an agent puts someone on hold from the loud, not-so-soothing, obscure 1980's and 1990's tunes to a wide array of listener's choice.  This is how the being-put-on-hold process would ensue:
AGENT: Ma'am, I apologize that I will have to put you on hold.  However, can I ask you what your favorite genre of music is so that your wait on the phone experience is delightful and not painful?

Lastly, I would hire this kid for office entertainment purposes:

All joking aside, I am still waiting on the insurance to see if they will cover Ian's therapy for this summer.  I'm so glad that I didn't wait and just moved forward with the appointments.  Now with school on the horizon, I am feeling even more confident about sending him across the district to the special ed kindergarten.  Ian has come so far in such a little amount of time, I'm so proud of my little boy.  One last superman picture, just because I love my boy so much and I can't get over how perfectly he pulled this pose off:

This is a good one.

I want to show you something that might shock you.  All parents of special needs kids, hold tight to your seats, because this one just might blow you away:

What's so shocking about this picture?  Two things.

1.  The insurance paid for speech therapy!?!?!?!?  *giddy squeal*

2.  The insurance paid for the speech therapy.  *Frustrated sigh*

To elaborate on point 1, for the new readers to my blog, I have called the insurance several times since January 1st asking them every different option I had for speech therapy for Ian.  I tried to weasel my way into every loophole I thought I'd found.  I even blew $1000.00 on a CT scan and a trip to an out of network pediatric neurologist to see if I could somehow prove that he needed speech therapy (next time I call up the insurance, I just might put Ian on the phone and make the supervisor talk to him, I think that would be proof enough that he needs the therapy.)  Anyway, each phone call ended in a very firm "no" from the operator and a feeling of complete helplessness from me.  It was very clear that there was no way the insurance would ever pay for Ian's therapy.

To elaborate on point 2, I found out that my local hospital would do discounted therapy sessions if I could prove that my insurance would not pay for speech.  I just needed the insurance to deny a claim.  Easy enough, right?  Let's not forget that this is an insurance company we're talking about, it's not Staples.  The operators don't have these hanging around their desks:

So I took Ian in for an evaluation, waited on the insurance, and received the above paperwork in the mail. 

And that leaves me completely unsure of what to do next.  Ian's therapist said that she has seen on occasion where the insurance will pay for the eval, but not the ongoing therapy.  It was time for me to make a decision: put the therapy on hold for another month and wait to see if the payment of that claim was a fluke, or schedule some therapy appointments and risk having the insurance make my life a living hell by denying the subsequent claims.  I chose the latter. Yeah, I'm a rebel. 

Ian went to his first speech session today.  He did well and I scheduled another appointment for next week.  In the meantime, I will be crossing my fingers and toes (and I'll tell my unborn baby to cross her fingers and toes as well) and hope that the insurance will just this once do something right.

Developmental delays don't keep him down

My little boy is fierce.  He blazes through life at the speed of Ian (not sure what the scientific equation for that speed is, just know that it's fast) and doesn't care that he's been diagnosed as delayed.  That's how he approached riding his bike without training wheels.  It's as if it was a small feat for him.  He kind of shrugged his shoulders about it as if to say, "I was born to ride two wheels".  Now that's not to say we didn't have a few moments of difficulty.  Ian also has a fuse as short as my pinky fingernail.  He's not explosive, but he's very defiant and outspoken.  Here's a quick version of how it played out:

"Hey, Ian, do you want to try riding without training wheels?"
Ian's eyes light up and he claps.  "Yeah!"
Ian's daddy removes the training wheels while Ian peeks over his shoulder intently.  Mommy holds the bike steady and waits for Ian to mount. 
"Okay, I won't let go, just start pedaling!" 
He pedals for a while.  Mom warns him that she's going to let go and let's go for a second.  This makes Ian mad.  Dismounting quickly from the bike, he throws it to the ground and yells (translated from Apraxia English to Standard English for the sake of my readers), "Hate my bike!  Hate my race car bed!  Hate my friends!  Hate my monkey!"  (Ian has a mental list of unrelated things that he likes to hate when he's angry.  It's quite a humorous list and makes no sense.)
He crosses his arms over his chest and stomps off in a huff.  Mom waits.  Ian returns.  They try again. Within no time, Ian is on his own and orders mom not to help him anymore.

Honestly, I thought we might be putting the training wheels back on, I wasn't sure that he had the balance for a two wheeled bike yet.  He proved me wrong.  And so do these pictures  (we were out camping, hence the pretty scenery):