Student Support Meeting and feeling defeated

Yesterday was a Student Support Meeting for Liam.  It was ill fated from the beginning.....the purpose of the meeting was not entirely clear to me, Dave is out of town, I was awake with insomnia from 1:30am, and on top of all of that, I am sick with what I can only assume is deadly pneumonia (I joke, but it feels that way).

In the room were: Liam's teacher, the school counselor, the school psychologist, the school SLP, the vice-principal, and the principal.

--First import point, I need to insist the AIG teacher attends all future meetings as she knows Liam really well....probably the best out of those that did attend the meetings.

We addressed Liam's anxiety in the classroom.  The school counselor has made him a social story book with photos of him, and suggested relaxation techniques (deep breathing, counting to 10). Now when he starts to get anxious, the teacher directs him to the book.  She said she is more responsive and has learned to direct him to the book before he starts crying.  She reports it is working well and he seems to have more confidence.

--Point for the school: they are writing social stories for him without an IEP and doing some things I'd want written into an IEP, like he takes the book to a quiet corner of the classroom and gets time to decompress and gets a sensory break.

I was asked what I am doing at home to help him manage anxiety and ensure a healthy brain-body connection.  I mentioned he does gymnastics and it was suggested that I look into kids yoga or karate for him.

--Do they really think I am not doing enough for my child?  I am not sure when we would fit in another activity.  I started to feel defensive around this point.

We talked about his reading fluency and this kind of took me by surprise as I had not been told it was an issue though I had some suspicions.  His reading evaluation show he is ABOVE grade level in reading.  His fluency score are BELOW grade level despite this.  Then of course, the fluency was averaged in to the total score which brings it down (but still above grade level).  Because of this, they are "working on fluency by having him read below his tested ability."  They talked to me about having him use a ruler when he reads at home and said this is a maturity thing that he should outgrow around age 7.  I am not sure I believe that.

--I need to figure out who to see to test either his reading or his visual tracking or both.

--I am unsure about this idea that it isn't a big deal especially since it means he is not performing up to his abilities.

Then we discussed Liam's writing, and this was when things really went downhill and I started to feel very frustrated.  According to his teacher, writing is not an issue at school.  The fact that crying ONLY happens during periods of writing is a coincidence and all chalked up to his anxiety.  She claims his writing is "middle of the pack" at school but acknowledges that her class this year does not have many middle students, almost all above grade level or below grade level.  In addition, she acknowledges that he does not form his letters correctly (starts in the wrong place and the result is awkward). I asked for him to have accommodations and the only one completely agreed upon is using the paper from Handwriting Without Tears.

Once again, all the focus was on what *I* can do to help him.  They did agree to keyboarding his homework but declined allowing me to scribe it for him.  At school they would like him to write.  They asked how much I make him write and whether I offer a variety of writing tools (i.e. colored pencils and not just crayons, etc).  They ask whether I do "OT homework" with him and how often I make him write.  He gets on the bus at 6:50am and gets off at 3:15pm.  On Mondays, I pick him up at school and we spend 2 hours doing speech and OT with him and Ben after which we immediately do dinner and bed.  Tuesdays we do homework when he gets home, then eat an early dinner, then take Ben to ballet, and then it is bed.  Wednesdays we go right to gymnastics then do homework then cook dinner then bed.  Thursdays and Fridays he is free after he gets home (other than homework on Thursdays).  Somehow I am supposed to fit in karate and making him write an activity he hates.  When does he get to be 6?  Why do *I* need to remediate his writing?  Is that not a function of school?

Then the SLP asked about his speech.  She cannot work with him on the R sounds but it sounds like she has been watching him and would be willing to advocate for him, if needed.

Then they asked whether I was requesting testing and while they said it was in my right to do so, they did not see how they could prove academic need based on the fact he is at or above grade level.  By this point, I was just weary, and Liam kept interrupting the meeting and I just wanted it over.  The school psychologist asked if I really wanted him pulled out for special education when he is already being pulled out 3 times a week for AIG.  I want him to have an individualized education, which obviously includes 3x a week AIG pull out.  If he needs reading pull-out or special education pull out to meet his needs, then that is what I want.  I am pretty sure, actually positive, he can have an IEP with all his needs met in the classroom and if that is possible, then that is what I want.

--I need to research NC law especially regarding initial eligibility as he no longer has an IEP and needs testing done to be eligible.

--I need to figure out if there is advocacy and if someone can attend meetings with me.

The battle with strep continues

On Monday and Tuesday morning, I noticed blood in Liam's nighttime diaper. This reminded me of March 2011.  I had a Wednesday afternoon doctor's appointment scheduled for him when Ben's school called on Wednesday morning that Ben had thrown up.  Due to Ben's social language delay, they found a pile of puke and had no clue who did it until they found Ben with some on his shirt and crocs.  A strep test confirmed that BOTH boys have strep.

AGAIN.

What is interesting about this is that Ben had been in underwear for 2 plus weeks and about 5 days before the positive test began peeing in his underwear and went back into diapers.

Let me remind you of the criteria of PANDAS:

Symptom onset includes Primary ONSET of OCD* and/or Tics
along with at least two other following symptoms:

.

• Tics or other abnormal movements
• Severe separation anxiety, Generalized anxiety
• Irritability, Emotional lability, Aggression, Personality Changes
• ADHD, Inability to concentrate
• Sensory sensitivities
• Deterioration in learning abilities and school performance
• Developmental and age regression (inc. Deterioration in handwriting)
• Sleep and night time difficulties
• Urinary Frequency or Daytime or night-time secondary enuresis

*OCD may present as severe anxiety

 

Ben has been waking up early, and repeating everything he says.

 

Liam's hyperactivity, aggression toward family members, and anxiety is over the top.

 

I hope we figure this out soon as I am tired.

The adventures of a 4300 mile move

Life has been a bit crazy since I last blogged.  After blogging that Ben was also sick, his fever went up to 105.5 while on antibiotics and fever reducers.  We spent the next two days battling his fever to keep it in the 101-103 range.

We got him better in time for the cats health certificate to fly.  The vet noted that Sammy was "obese but otherwise healthy" (snicker).  With Murray, she guessed that he was losing his vision, has a heart mummur, and his liver values were off.  Murray is very special to me, so this was quite upsetting.  We saw the vet we love here in Montgomery and she confirmed that Murray only sees shadows and is almost blind.  She said the other two things are non-issues at this time.  I made Murray ;promise he'd live forever.  He seems happy enough and has adjusted well with all the changes in the move, so it seems it isn't impacting his life much.

After all that was the actual flight.  I expected for us to get kicked off the plane, so really I guess it went better than expected.  We took from Anchorage at 9pm on July 16th and landed in Minneapolis at 5:40am on July 17th.  On the plane, Ben kept saying he was scared and started shaking during take-off.  Liam and I sang to him and distracted him and he relaxed once we were in the air.  I gave both boys melatonin, and the night went like this:
-Ben falls asleep in carseat, Liam awake for 45 minutes (and two extra doses on melatonin)
-Liam falls asleep across my lap (Dave was across aisle and missed all this fun)
-5 minutes later, Ben starts crying and comes out of his carseat so now BOTH boys are on my lap
-20 minutes later, they both start crying and Liam goes in carseat
-15 minutes later, Liam starts crying and comes back on my lap.
-10 minutes later they both are crying and Ben goes in carseat
-10 minutes later both in my lap

It repeated every 5 to 10 minutes, switching from carseat to lap.  At one point out of exhausted desperation, I woke Dave who had slept through 4 hours of this, but that only resulted in Dave, me, Liam, and Ben smooshed into 2 airline seats.

Did I mention that they cried every 10 minutes?

We land in Minneopolis and are hurring to find are connection which was due to leave in 10 minutes when Liam barfed all over himself and the floor in the middle of a crowded terminal.  The good news is that our 2nd flight was delayed.  Flight to Atlanta was uneventful.  While at baggage claim, Ben was so exhausted he passed out in his stroller and napped 4 hours through the transfer into the car, drive to the hotel, and being carried into the hotel.  Liam, was awake until Tuesday night,,,,which meant he was awake for about 40-48 hours straight.....he even managed to swim for 3 hours in the hotel pool and never exhibited a single sign of sleepiness.

Let me interject here to declare: "I HATE YOU PARENTS OF GOOD TRAVELERS." and I believe there is a special spot in hell for people who declare confidently that it is the parents that make children good travelers.

We arrived in Alabama on July 18th, and soon found out that the moving company SCREWED up.  There were supposed tocall us when our stuff reached Alabama, but they "forgot."  They were supposed to call a 2nd time before putting our stuff in a storage unit, but they "forgot" to do that too.  As a result, we didn't get our stuff until July 28th.  I am sitting in a house, surrounded by boxes.

We cannot get referrals for therapy which means we cannot get on any waiting lists.  Dave is considered to be "on leave" which is funny as this hasn't felt like a vacation.  Until he is allowed to in-process to base (which he cannot do yet), we cannot get in to see a PCM.  Our Alaska doctors are not allowed to refer the boys for therapy here in Alabama and we only have access to urgent care.

The extra fun part is that we get to do this move again next year.

The cupcake incident of 2011

Ben's birthday fell on a Wednesday, which happens to be our busiest therapy day.   In addition, Dave is out of town which means he is 0 for 2 on Ben birthdays.   I decided I needed to do *something* to commemorate Ben's birthday as I am holding his present until Dave gets home.  The night before I got a sitter and ran downtown to Cake Studio, a swanky upscale bakery and bought 3 cupcakes: a brightly colored lemon, red velvet, and berry chocolate.  My plan was to let the boys eat cupcakes for breakfast, but I forgot that Ben will refuse to do something unless he initiates it, so he refused to go downstairs early enough to allow cupcake eating before Liam caught the school bus.

Being stupid stubborn, I think this is the only hitch and figure we'll eat cupcakes at lunch before the 1st of our 4 appointments.  So I make the boys lunch, but immediately, Ben is yelling no and climbing out of his seat, so I figure "He only turns 2 once; I'll just give him the cupcake now."  I even bough a candle that says "2" (I know it looks like a Z, but trust me, it is a 2).

I light the candle and put it in front of Ben and he immediately glares at the cupcake, pissed off at its mere existence.  He became furious when Liam and I began to sing Happy Birthday.

Liam tried to explain how to blow out the candle but Ben just kept yelling "No!" so finally Liam just blew it out.  Here Ben is still yelling "No" and turning away from the offensive sight of a cupcake:

Finally, he started tasting it and realized cupcakes were not a device of torture or secretly harboring spinach

Meanwhile, Liam is whining and crying.  First, he demanded that it was HIS birthday and I needed to sing to him.  He became so distraught that I gave up and sang to him, but that wasn't enough, as he demanded the candle.  Now, Liam thinks he has turned 4. *eye roll*  He tasted his red velvet and started crying demanding Ben's lemon cupcake.....but this was the moment Ben was eating it, so I refused.  I gave Liam the berry chocolate cupcake and then Ben starts crying and pointing at the cupcake in front of Liam, who is now saying he doesn't want any cupcakes as they are gross.  So I gave Ben all the cupcakes.

Ben and I had already eaten the cream cheese icing off the red velvet and he was angry that I had the audacity to put a cupcake without icing in front of him.  He removed it from his plate and I ate it.  After that, Ben said he was all done and left the table.  Liam refused to eat anything at all and also left the table.  I decided to update Facebook with the cupcake fiasco.....only to realize, it had gotten worse.

I went to clean up the table and the berry chocolate cupcake was GONE.  But I found a trail through the house of chocolate drool:

At the end of the trail was this:

I was trying to clean up his trail when he bolted into my closet and grabbed one of my shirts off the hanger and started using it to clean his face.

After this, I cleaned Ben up and we immediately started our string of appointments that kept us out of the house until 6:30pm and that was when we started dinner.  I was one tired mama.

I think next year I'll skip the cupcakes.

Melatonin

I have blogged often about sleep, as it is a battle we have had with both boys. 

Liam started self-soothing at night at 1 year old, but didn't actually sleep through the night until 2.5 years old.  Around 18 months, he began to have problems falling asleep and would bounce circles around his crib for 3 hours before collapsing into an exhausted sleep and only sleeping for 8 hours.  It went on for about 5 months as we could not make him fall asleep.  Around this time, I began researching Sensory Processing Disorder and realized many kids with sensory issues need mealtonin to fall asleep as their bodies don't produce a sufficient amount.  We tried melatonin with Liam and I started calling it my miracle drug.  His pediatrician approved an amount as high as 3mg and we did need that amount for a brief time, but he is down to 1 mg a night.  Occasionally, we try to skip it, only to find Liam laying awake in bed, confused as to why he cannot sleep.  His little body needs that extra push.  Yes, we have tried a weighted blanket to help him produce his own melatonin, but it doesn't work.

Ben turned out to be a worse sleeper than Liam.  He didn't sleep through the night without soothing until 19 months.  In the past 5 months, he has started to take longer and loner to fall asleep.  For the last few weeks (3-5 weeks or so), it has taken 2 hours.  During the last week, he demands a book and just lays in bed pointing to letters and naming them.  He wakes up 8 hours later and is miserable.  Twice last week he fell asleep in the car at 10am from exhaustion and then refused to nap.  Things were getting worse, not better.  I had tried melatonin in the past with him, for his night wakenings and to help with our move to Alaska (when his sleep was something like 4 hours in a 24 hour period) but it didn't work.

Last night I gave Ben 1/2 mg of melatonin and he was alseep before I was done putting Liam to sleep.  He woke briefly at 10pm but quickly settled back to sleep and slept 11 hours.  It felt like a miracle!  Melatonin is a miracle drug for both boys.  I hate that I need to give my boys anything to sleep, even a natural supplement, but I know their bodies need more than 8 hours of sleep a day.  If Ben dos have sensory issues, it makes sense that his body is as deficient in mealtonin as Liam's body is and given Ben's history, I wonder if he doesn't even produce LESS melatonin than Liam. 

Let's hope this change leads to a more rested Mommy.

Nap Nightmares

Sleep has always been a battle for us.

It was a battle with Liam.  Liam didn't nap out of my arms until he was 4 months old.  Then he didn't nap longer than 30 minutes until he was nearly 9 months old.  Then before Ben was born, sometime around Liam turing 18 months, he started to take 3 hours to fall asleep for a nap and would wake up and scream for 30-60 minutes.  He stopped napping reliably sometime shortly after Ben was born.  He'd nap for a couple weeks then would refuse a nap for 3 months straight.  He generally went into his room for a nap okay and would stay there for 1 hour or so.  I gave up trying when he turned 3 and both of us are happier now. 

Liam's nighttime sleep was no better.  When he was a newborn, sleep seemed promising.  He only woke every 2-3 hours and went right back to sleep.  Then he started to spread out his feedings.  By 2 months, he was reliably going about 7-8 hours at night.  Right before 4 months, he slept 12 hours straight twice.  Then he turned 4 months, and didn't sleep through the night again for 8 months.  Between 4 months and 12 months, we'd be inj his room as often as 12 times a night.  Usually from 8-10pm, we were in there 4-6 times.  Then from 10pm until 6am, we were in there once every 90 minutes or so.  At 12 months, he started sleeping through the night, but it was short lived.  During my pregnancy with Ben, he'd wake at night and play alone in his crib for 2-3 hours.  He didn't need us to get him back to sleep, but he was only sleeping 6-8 hours at night (and remember naps were a struggle).  Sometime around 2.5, he started sleeping through the night.  Now he gets about 10 hours of sleep a night.

If I thought Liam's sleep was bad, I was in for a rude awakening with Ben.  Ben never napped.  Until about 6 months old, his "naps" consisted of 5-15 snoozes.  By 7 months old, he was actually napping but only took one nap a day.  Since about 15 months, he'll only nap about 3 or 4 times a week and often then only for 30 to 60 minutes.  But he doesn't lay in his crib, he screams.  If Dave is home and rocks him, he falls asleep, but he simply won't sleep for me.  If you have followed my blog, you know that Ben didn't sleep at night.  Unlike Liam, he didn't want to nurse, he just wanted to scream in pain.  He was up from 1am until 3 or 4am most nights and often up for the day between 4 and 5am.  When we maxed out his Prilosec dosage, he began sleeping through the night.  He also sleeps about 10 hours a day.  If he does nap, he screams for 1-2 hours after waking up.  If he doesn't nap, he requires me to hold him non-stop from 3pm until he goes to beed, often crying and repeating "walk walk" and screaming if I don't comply.

Today he fell asleep with his white noise machine on full blast.  Sammy was on another floor of the house and meowed and Ben woke up demanded "kitty" and despite rocking, nursing, and being left alone will not fall back to sleep.  My back has been in screaming agony for a week.  I cannot stand straight.  I need Ben to rest so I can get a break from carrying  him.  I am so tired of the nap battles.  I have struggled for 3 and half years trying to find peace with my sleep situation and it hasn't happened.  If Ben doesn't nap, I am punished with listening to him randomly scream for the rest of the day, and if he does I need to spend 2-3 hour rocking, nursing, shushing to get him to sleep, and then to keep him asleep I need to make sure Liam doeesn't talk, no cats meow, no one calls the house, no one flushes a toilet, no one uses any appliances, and no one watches TV or listens to any music....and then I get 45 minutes of "peace."  There has GOT to be a better way.

Need a pep talk

I knew this day would come when I wouldn't be able to see the end in sight.  I am 2/3 done with the deployment, but I feel lost and don't know how I'll make it to the end.

Ben's nighttime sleep is no better.  Today is the day when Ben is exactly the same age Liam was when I got my positive pregnancy test.  This means that Ben has been nursed longer than Liam (yay!) but it also means that Liam was sleeping through the night by now......and Ben is no where close to that milestone.

I am exhausted; I never get 4 hours of straight sleep.  My to-do list keeeps growing.

I feel adrift, like I am just biding my time until Dave returns and when I can get enough sleep to feel human.

Trying to beat the "ick"

We are sick here, all of us.  It started with our weakest and smallest member.  Two weeks ago Ben caught a cold, and just kept getting worse and worse.  By day 12, I admitted defeat and called the base clinic.  They were booked of course, but referred me to urgent care.  We spent 2.5 hours there Friday as they tested Ben for strep, the flu, and did chest x-rays and bloodwork.  It happened to be our 4th doctor's visit that week.  Ben tested positive for the flu, so the doctor guessed it was a false positive and we ccame away with 3 different medicines.

Sunday Liam started feeling sick, and last night spiked a really high fever: 104.7 on one reading and 105.1 on another.  It is down to only 102 today, but we had to cancel his scheduled occupational therapy and ABA therapy and keep him home from school.   This is how he spent his morning:

You can see he got pink eye; thankfully, I had the foresight to see tthe doctor yesterday so we have ointment for it.

I started feeling sick yesterday and am getting worse by the moment.  I am not really sure what happens if I cannot function.  I think I'll put Murray in charge.

Sleep deprivation, the same old story & other random things

Dave and I do not have sleeping genes it appears, and both boys have been challenged in the sleep department. I seriously have some sort of PTSD related to Liam's sleep from his 8th month of life until his 11th month. It has scarred me and distorted my view of all things sleep related. I am fairly certain that a 3 month stretch of sleep like that while Dave is deployed will kill me.

Last night, I was still awake at 10:30pm. I should have been in bed, and usually am by that time, but last night I was worried about Dave. He is very busy and only gets a chance to write 1 line e-mails, and I had last heard from him before he left the safety of his base, and he never wrote to tell me he made it back. Around 10pm, when it was morning his time, he finally had written to me. So I was awake when Ben woke up. He nursed until 11:30pm then it took me 30 minutes to fall asleep. I was very groggy when he woke at 1am. I dosed in and out while he nursed until 2am. He woke for the day at 4am. That's right, 4am. That gaave me 3 hours of broken sleep. It also meant he was asleep for a total of 8 hours with 2 one hour long wake-ups. How can that possibly be enough sleep for him?

We had to leave the house at 6:30am for Ben's weight check on base. It was a decent appointment. Here are the stats:
Length: 27.25 inches which is 65th percentile
Weight: 15 pounds 6 ounces which is 8th percentile
Head: a bit over 18 inches which is 89th percentile
Most importantly, we got a referral to see a different GI doctor and get a 2nd opinion on what is going on with Ben.

Dave is experiencing his own exhaustion due to work days that sometimes last 20 hours. I hope things improve for all of us soon.

3:30am

I have been awake for 2 hours already. With Liam waking up at 5:30am for weeks now, I am not sure I'll get more sleep, or if I do, if it will be much.

It all started with Murray (that's my older, skinnier cat) puking on the bed and into the pack-n-play (though thankfully, Ben was sleeping in his crib in his room). Dave cleaned it up but we were still awake when Ben woke to nurse. I nursed him, but he was wide awake when he finished. Dave took him to soothe him to sleep, but he started screaming. He was arching his back and doing his reflux cry. Dave's alarm is going off at 5am for PT (military work-out) so he asked me to take over. I went to get a carrier from the closet and smelled that Liam had pooped. So I took over Ben, while Dave went to change Liam's diaper.

Now it is 3:30am, and Ben is lightly asleep. He'll wake if I transfer him now, so I am waiting until he is sound asleep.