I have a kindergartener!

Liam has started kindergarten at only age 4!

He went Wednesday to meet his teacher and classmates.

He is one of 15 kids and has a great teacher.

Since he has no IEP, I wrote a letter to the teacher explaining Liam and a copy of this book: book about Asperger's .  I'd be happy to share the letter if anyone is interested. 

The teacher said he is doing well.  The first full day.  The class went on a treasure hunt to find pirate's treasure box and learn their way arond the school.  It might be a private preschool and kindergarten that is part of a church but there are 470 students and 44 teachers!!!!!!

The school is such a positive place.  The teacher uses positive discpline techniques (i.e. rewarding good behavior) which fit along with ABA principals.  Liam will do daily PE and recess and get weekly music.  He will work on all the academic skills I'd want him working on.

Another positive is that Ben loves the play area inside the atrium:

I am hopeful for an amazing year and feel good that all my research and worry is being rewarded with a perfect fit for Liam.  The fun part is that when we find out where we move next summer, I get to do it all again.

Not sure where to go from here

I have lived here before, so I thought I knew the landscape, but things change in 2 years.

I knew that by placing Liam at a private school, we'd lose his IEP.  I battled with anxiety over that for months.  He has started school (will be a seperate post) and I now am confident that was the best choice.  I am still on the fence about initiating a transfer of Ben's IEP as I expect he will lose it after they re-evaluate him, especially since his only diagnosis is vague.

I did not expect getting private services to be so difficult.  We planned to use Liam's BCBA we used in 2010.  She is not responding to my attempts at contact and when I called Liam's ECHO case manager, she could not find her name.  I got a list of other BCBAs, but it doesn't look hopeful for ABA to work out.  I can get services from 4-6pm or I can drive to Auburn.  Honestly, I am not sure how I feel about either choice.  I can be judgemental and have high expectations and the services offered here in Montgomery did not meet my expectations.  Auburn seems promising but that is a way to drive with two small kids....and the place would be starting therapy at 3pm.  I actually planned to phase out ABA next year as I am not sure it fits Liam's needs anymore.  I am okay with giving it up this year, but I want to make sure he doesn't regress.

Speech services are non-existent here.  The base doctors are referring to only one place and they have a 1 year wait list.  We leave in a year.  I called the place where Liam did private speech last year.  They have a waiting list but it was small and I was really impressed with their new director of services.  I called Tricare to change Liam's referral but was told that center is considered "out of network."  I remember it was when I lived here last, but the Tricare person changed it for me.  This time the Tricare person was quite snotty and said she didn't care if the place he was referred had a 1 year wait list.  I would need to take Liam back to his PCM and the PCM would have to write a justifcation which the snotty Tricare lady said could then be denied.

I cannot have Liam have no IEP, no speech, and no ABA.

I am having trouble figuring out where to go from here though.

He will start hippotherapy in September and he is on a waiting list for OT.  I have looked into social skills groups and the nearest one is Birmingham and would cost $40 a session out of pocket.

Did I mention that I am having trouble functioning due to nearly crippling depression and anxiety and utter hatred of the heat?  No one from base will call me back and there are NO appointments for me to be seen.

The great Kindergarten debate, debacle, and finally decision

The last 6 months have been very stressful while deciding where Liam would attend school for the next school year.

The simpliest solution would be for Liam to attend our neighborhood elementary school less than a mile from the house.  Initially, my biggest concern with sending him to kindergarten here was due to the fact his birthday is less than 2 weeks from the cut-off, meaning he'd be the youngest in the class and likely the whole kindergarten.  I considered holding him back a year, but the neuropsychological evaluation specifically advised against it and I was counseled that Liam might even need to skip a grade in the future.

The other concern I had about the neighborhood school was based on special education services.  Another JAG family with a son with autism will be placed at a different school in a special education classroom and his family was told the nearest school did not have the support he needed.  I asked for Liam to be placed at that same school, but was told that since Liam will be mainstreamed, they will not place him in a different school unless he struggles.  By law, Alabama has to follow his current IEP for one month, but after that, all bets are off, and based on my experience the last time we were here, I know the support offered with not be adequate.

The third concern was based on where Liam is advanced.  According to his testing, he was doing math, reading, spelling, passage comprehension at the 1st grade, 7 month level in March.  He needs to be working at the 1st grade level in many areas, while making accomodations for his developmental delays.  The neighborhood school's answer to this is to take advanced students out of the kindergarten room and send them to 1st grade. Liam does NOT handle transition well so this solution would have been disasterous.  Liam never did adjust to visiting the kindergarten room with his speech teacher last year in his special education preschool.

This was basically 3 strikes against the public school and made me decide it was not the right placement.  This, however, caused alot of doubt and anxiety as private placement means losing the IEP. 

In May, Liam had a chance to test for a slot at the academic magnet here in Montgomery.  There were lots of issues with this process. I think I vented my frustration about it earlier this month.  In the end, Liam WAS offered a slot at the academic magnet, which claims to work one grade  level ahead.  After arriving in Alabama, we visited the magnet, and Liam would have been able to manage EVERY requirement BUT ONE.  They have student do copywork and write 4 sentence paragraphs that need to be illustrated.  The students do this completely independently while the teacher does small reading groups.  A kindergarten teacher watched Liam write his name and due to his improper grip said he would not be able to meet this requirement.  I asked about accomodations, and it was clear the school would not work for us.  In describing a student with a fine motor delay she had last year, the teacher mentioned that the student's mom mentioned she'd be wearing noise-cancelling headphones at school for 1st grade and the princiapl basically acted like that was an unreasonable thing and the student would be forbidden from doing so.  I don't have the time, energy, or patience to battle that level of ignorance.

So, we called the academic agnet and declined Liam's spot.  It was the right decision for Liam, but I worried that turing that spot down meant Liam would not be challenged.

Way back, I regsitered Liam at a half-day private kindergarten (the public kindergarten programs are full day).  This kindergarten is part of a preschool program, and has 3 kindergarten classes of 15 students each.  The school is at a large Methodist church and teacher reading and math by the A Beka method, and included social studies and science learning centers that rotate each week or every other week.  They formally teach Music weekly and Physical Education daily.  If Liam stayed for 6 hours rather than 4 (optional and offered twice a week), he will get TWO recesses.  It seemed to meet all the needs I had, and given the small size minimizes the transition issues Liam sometimes experiences.  Because it is half-day, Liam will have his afternoons free.

Here is the BIG decision, I will partially homeschool Liam this year.  He has completed the Handwriting Without Tears curriculum THREE times, but still struggles with handwriting and does not use the correct writing grasp.  I am going to attempt teaching his the curriculum myself in order to improve his writing skills.  I hope that ABA and OT will continue to work on this, but I would like to be able to say that I personally did all I could.  I also have ordered some science kits and a multi-sensory grade 1 math program (Math-U-See) in order to teach enrichment in the afternoons and ensure he is challenged academically.  I have a multi-sensory reading program picked out in case I feel like he needs more teaching for reading.  I don't know that homeschooling is in our future, but I do know that it will be difficult to find a school environment that can support Liam's delayed areas and challenge him in his advaned areas.

Now I can finally get excited over the fact that my first born is starting kindergarten....KINDERGARTEN!!!!!!!!  Where has the time gone?

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.

Strep and ear infections times 2 and other things making me sad

A week ago Liam woke up with a 103 fever, and a trip to the base pediatrician clinic showed a left ear full of fluid (his tubes only fell out a month ago) and strep throat.  We got a script for amoxillian and came home.

Last night I found out that the ABA tutor we worked with in Montgomery will be taking a year off from providing therapy.  Emily is amazing and she was one thing I knew would be good for Liam in Montgomery.  Liam's BCBA in Alabama already has him scheduled with someone else, but Emily is quite special.

Last night Ben wouldn't sleep.  He hadn't napped yesterday but still he did not fall asleep until almost 10pm, was awake from 1am until 3:30am when I gave him melatonin, and he woke cranky this morning.

In between trying to deal with Ben, I saw some news at the preschool in Montgomery where Ben will be going.  The director there is moving.  She is also quite special, and was so patient with me as I asked a million questions and stressed when Liam started preschool.

I noticed Ben was warm, so off to Urgent Care we went, and he also has a fever. strep throat, and an ear infection (his tube in visible in one ear and that one is clear, but his right ear is infected and no tube is visible).  We just got home with a second script for amoxicillian.  The last dosage is the day we board our flight.

The Gambler

When I moved in with my grandparents when I was 9, I spent a lot of time doing farm chores with my grandfather, listening to Kenny Rogers.  I knew every word to "The Gambler": You got to know when to hold 'em, know when to fold 'em, know when to walk away, and know when to run.  You never count your cards when your sittin' at the table, there'll be time enough for counting when the dealin's done.

Dealing with MPS department of special education or even MPS at all reminds me of this song.  I dealt with them in August 2010 and the result was a poor evaluation (now that I have seen Ben evaluated and know how much better it could have been done) and an awful IEP.  Liam had the good fortune to move to Alaska where all his needs were met despite this.

I am not in Alabama yet, but I am already wondering if the fight is worth the outcome we'll receive.

In addition to already feeling bullied by the special education department, I am just angry in general.  Montgomery has a very small number of magnet schools.  In every year before 2012, there was a January and May application period.  This is important as Montgomery has such a large military population.  When the January 2012 magnet application period happened, they filled EVERY slot in the magnet school.  There was no notice this was happening.  Who does this impact?  Military families!

After pressure from several sources (including another JAG family who moved to Montgomery in February), MPS said they'd do a May Application period if you had military orders showing you were not present in Montgomery in January.  They said that additional school slots would need to be approved. I anticipated only a handful of kids would be applying.  As I am in Alaska. I had to go to Liam's special education teacher and eventually the lementary school principal.  They made personal time to ensure Liam could test.  In the meantime, my friend in Montgomery said they ended up doing testing for 2 weeks, testing 30+ kids and at least 5 kindergarteners at each testing time.

This week we all got letters, saying that while our children were "qualified" to attend the magnet school, there were no slots.  They did that testing, supervised it, and clearl never intended to open any more slots. I don't know what it cost MPS but I know those resources could have gone to the special education program which they keep claiming in under-funded.

To say that I am furious is an understatement.  To say that I have not an ounce of trust or respect for the adminstration of MPS is a truth.

I have some ideas swirling around my head about options for how to best protect Liam, but I think the end result is that I will send Liam to the private half-day kindergarten I enrolled him in months ago.  Now I just need to find the belief in myself to trust that this is the right decision and not beat myself up.

A first for our family and Ben's language development

Ben has graduated from physical therapy.  This might sound like a small thing or even an expected thing.  For most kids, they start a therapy, catch up, and then no longer need the therapy.  That has not been our experience, however.  Both boys started Early Intervention, only to transfer to the school district at age 3 (unlike many friends whose children caught up through early intervention).  Liam has done OT and ST for yeaars and while he no longer keeps falling behind, he still needs those services.

Ben started PT for toe walking and with a limited range of motion in his ankles which made walking with flat feet difficult.  Early Intervention had worked on this with him since November 2010, and the toes walking was getting worse, not better.  Ben's PT set a goal of him having a 10-15 degree rangle of motion in both ankles, and his range of motion is 19 degrees in one and 21 degrees in the other!!!!!!! 

I was worried that Ben would ended up with casts to prevent the toe walking, but we just avoided that.  As a HUGE aside, I am down one appointment to run the boys too.

See Ben's hands there?  That is the startle reflex babies have to swinging or unexpected motion. Ben STILL does this.

Language wise, Ben is doing amazing.  Three HUGE leaps happened in the last couple weeks.  First, Ben has added pronouns, and has started to say "I do [blank]" rather than "Ben jump" or some other simple phrase spoken in the 3rd person.  Second, Ben has started speaking in sentences FINALLY. Previously, he spoke mostly in 2 to 3 word phrases but we are starting to hear sentences.  He doesn't have much fluency and I find him very hard to understand, but the sentences give me more context.  Third, he can answer questions.  Liam still has trouble with questions.  Ben might not need speech therapy when we arrive in Alabama.

OT wise, Ben still has needs.  He can now remove socks and a jacket, but cannot remove any other clothing.  He still cannot put any clothing on.  Sensory wise, he tends to be quite defensive and struggles with sensory integration a lot.