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.

Kindergarten graduation

Liam has had a wonderful year at Frazer Memorial Kindergarten.  I had a lot of angst about putting him in private school and losing his IEP, but given the school situation here in Alabama, it was the best choice for him.

Mrs. Struthers reports he is ready for 1st grade and has done wonderfully.  She said his fine motor skills and writing have developed and improved.  Despite being the youngest in the class, by quite a bit, he is academically near the top of his class.  She said in the beginning of the year, he was more of an observer but now he socially engages with all his classmates.  He does become tearful easily but is working on controlling his tears with deep breathing and counting.  She said that one day she became tearful thinking how much she'd miss her class, and all of the kids started yelling "Do the breathing Liam does; it helps him!"  So he is clearly accepted as part of his class.

I am proud of him and his hard work this school year.  I will miss Frazer and his wonderful teacher.

Pledge of allegiance

The boys have learned the pledge of allegiance at their schools.

Here is Ben doing it.  Any thoughts on his articulation?  I always worry that it should be better.  I don't worry about the big words, but more about trouble with initial blends.

Liam also learned the pledge, plus he sing "my country tis of thee" afterwards.  Notice how different his version of this song is....I giggle everytime he sings it.

Ben is now a preschooler

Ben started preschool yesterday; he is axcited to be at school, just like Liam.

He ran into the room and the only tears were from me.  We are lucky to have him at the same school and the same teacher that Liam had at age 2.

This is a huge milestone for me.....I have free time for the first time since Liam was born!!!!!!!!!

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.

Big changes ahead for my big guy

I am still struggling with the Kindergarten decision and trying to find someone, anyone in Alabama to answer my questions about the transfer process from 3-5 to kindergarten and how private schooling affects the IEP.

In the meantime, we re-wrote Liam's IEP here in Alaska.  He has a great IEP team here and between his special ed teacher, his speech therapist, and the school OT, we came up with some great goals.  One of the goals is to expose him to the "open play" time in a kindergarten class.  Since Liam's special ed preschool class is located within an elementary school, there are kindergarten classes right down the hall.  The speech therapist suggested she could take him into a kindergarten class to help address his IEP goal of maintaining a conversation for 4 exchanges. 

Today is the big day!  Liam will be escorted into a kindergarten class so he can get exposure to more transitions and so he can practice conversation with some older and more advanced peers.  It will also provide us with some feedback about how he manages in that type of environment and will highlights any additional supports he might need in order to succeed in a kindergarten classroom.

In addition, in mid-March, Liam will have neuropsychological testing to look at areas of skills versus achievement.  I am hoping this testing will highlight splinter skills, as Liam often tests in the "normal" range while lacking age appropriate skills. 

Liam's IEP goals:
-Upon request, Liam can give his first and last name, school, grade level, name of teacher, parent's name's, parent's phone numbers, and address with 80% accuracy.
-Liam will participate in group activities by sharing ideas, making comments, and asking questions in 4/5 opportunities.
-Liam will use proper eye contact and body orientation (baseline is he only does 20% of the time)
-Liam will maintain a conversation for 4 communication exchanges.
-Liam will independently identify and use socially acceptable ways of managing stress and anger (teacher specifically mentioned this being useful in Kindergarten while waiting in line or transitions)
-Liam will remain on task and complete tasks in the same time frame as his peers by demonstrating sustained attention to task or teacher (biggest struggle at the moment)
-Liam will use a tripod grasp 80% of the time (baseline is 20%)
-Liam will use developmental appropriate drawn lines to draw a recognizable picture.
-When provided a completed model, Liam will manage his materials to complete a 3 step visual motor task.

The Kindergarten Conundrum

I told you yesterday that there was too much for one post, so I am back to give information about why the Kindergarten decision is hard for me.

Liam turns 5 on August 20th, and the cut-off date for Kindergarten is September 1st, in both Alaska and Alabama.  This means that he only makes the cut-off by 11 days and will in all likelihood be the youngest in his class.  In addition, I have heard from a friend that Nebraska is changing the cut-off to July 1st, which means if we were to move there, Liam's birthday would be AFTER the cut-off.

As a September 2nd baby, I have been in this situation.  I made the cut-off in Pennsylvania, but not in Georgia, and I moved between the states several times.  When moving into Georgia, I had to undergo 2-3 days of IQ and academic testing to avoid repeating a grade and then I was always the smallest and the youngest.  I had no problems in school, socially or academically.  I was reading and writing by age 3, and schools soon learned I did better when challenged.  That was my story and Liam is a different kid than me.

For a long time, I have assumed that I would just hold Liam back and do an extra year of preschool.  I have many friends who have done that, and I figured my decision would be no more complicated than that.  That is not the case.

Alabama will NOT provide services to a 5 year old who is retained in preschool by their parents.  In itself, this is not too worrying to me, as we can continue with private speech and OT.  In addition, I know where he would go to preschool, and I love it and am excited to have him and Ben in the same school.

My concern is what happens the next year?  You know, the year he starts Kindergarten and we are in our 3rd state and 18-20 months from the date of his last IEP.  Not all states recognize PDD-NOS as being the same thing as autism.  Here in Alaska, PDD-NOS only guarantees an IEP through age 7.  So what happens if we move to who-knows-where, and Liam is tested at age 6 for Kindergarten skills and doesn't qualify for an IEP?

I decided to research Wrightslaw to see what my rights are in this area, and all I came across were article saying that retaining special needs kids in hurtful and delays their progress.  There is no information about how to ensure I don't lose an IEP while retaining.

So, my other option is to just send him on to Kindergarten in Alabama, as he will have a kick ass IEP written by Alaska.  But what if Alabama can not or will not provide the same level of interventions we have gotten used to in Alaska?  What is this means that Liam, as the youngest in his class, ends up struggling?  What if he ends up hating school?  What about the future with him always as the youngest?

Just thinking about it makes me want to start drinking at 9am.  And it makes my heart hurt and my head spin.  I feel like I have the power to royally screw up Liam.

Those are my thoughts and fears about making any decision about Kindergarten.

Thoughts? Commisseration? Anyone want to drink with me? 

More speech progress

Liam's SLP did a new therapy plan for him about a month ago, but kept forgetting to give me the paperwork.  Now that I have it, I want to write out what Liam is now working on.

1.  Liam will initiate social communication with peers and/or clinician in 4 out of 5 opportunities.

2. Liam will adjust vocal volume based on the environment 90% of the time with minimal cues.

3. Liam will demonstrate improved grammar and syntax with 80% accuracy.

4.  Liam will maintain a conversational topic or pretend play story for up to 4 exchanges.

5. Liam will answer questions about past events with limited visual cues in 7 out of 10 opportunities.

6. Liam will respond to who, what, where, and why questions in 8 out of 10 opportunities.

Just typing out these goals, I'd say that he is on his way to meeting goals 1 and 3, but needs significant work on the other goals.  It is hard to believe that a year and a half ago, he wasn't regularly putting two words together.  It is nothing short of amazing actually.

I have noticed more leaps in his language since starting his church preschool.  He has started to make small talks and spontaneously engage in social greetings.  He is aware of many more concepts.  He is figuring out the concept of time and has our schedule memorized.  He has even started to finally ask questions.  He tries to figure things out now, and is showing curiousity in the world around him.

In other news, he started Pee Wee Karate.  The only goal of the class is to teach them how to act in a karate class and learn a bit about stranger danger.  He loves it and I am happy with the way the class is taught.

I am still trying to figure out how to get referrals and how to track down the school OT to see what the results of her informal evaluation of Liam's fine and gross motor skills.

Back to school

I survived the summer!  It was a serious question whether I would. ;-)  Back to school encompasses a different set of challenges and we will be busy the next few weeks settling into our new schedule. 

This year Liam will be going to TWO different preschools.  In the afternoons, he will go to the public special education preschool where he went last year.  The program is 5 days a week, for 2 hours a day.  In order to accomodate his crazy therapy schedule, he will miss class one afternoon a week so we can drive downtown for his private OT and speech therapies.  He started the special education preschool this week, and was so excited to be back.

Today is his 2nd day back and so far, so good.  I am adjusting to the new bus schedule as he gets picked up right when Ben goes down for a nap.  Liam is adjusting as well as his class this year is a totally new set of friends.  In addition, his teacher had surgery so he is starting off the year with a long-term substitute.  On top of that, the school's SLP retired, so he has a new speech teacher at school.

Today we met with his morning preschool which is at a local church.  This preschool will meet 3 mornings a week for 2 hours and 45 minutes.  The class will be quite larger than anything he has ever been in before.  When he attended Mother's Day Out in Alabama, his class was never larger than 6-8.  His special education class has always been 6 or fewer children.  This new preschool will be 15 kids and only 2 teachers.  The meeting today was with the director, the teacher, teacher's aide, Liam's BCBA (ABA program manager), Liam's ABA tutor, me, Dave, and the boys.  The plan is to have his ABA tutor there the whole time class is going on, unless she is sick.  She will manage any meltdowns and will help Liam navigate any social situations.  This school has a Montessori feel to it.  The classroom will have various stations and the play/work is child-initiated.  I think this set up will be perfect for my stubborn strong willed preschooler.

In addition to two preschools, Liam will be returning to his Tumbling class, have individual ABA, private speech and OT, and hopefully have time left over to just be a 4 year old.

Ben is not in school, but will also have a school based schedule.  Starting in September, Ben will be doing a social skills group that is sponsored by Early Intervention and held at the center where Liam does therapy.  The class will have 4 parts: tumbling (gross motor), creative movement (music), circle time (social skills), and snack (feeding/social skills).  Half of the class will be receiving services from Early Intervention and have some sort of delay and half the class will be typical developing toddlers.  I know Ben will love the tumbling and creative movement portions as it will be the same stuff Liam does during his class (which Ben imitates).  I know Ben will struggle in the circle time as I have not been able to get him to sit in any type of group circle, much less participate.  The instructors will be prepared for that though, so I am not too worried....I just know it will be challenging for him.

In addition, Ben will continue his OT through Early Intervention.  I talked with his therapist today and sometime in October, we will start discussing a transition plan.  Ben will either graduate from Early Intervention or transition to the school district as Liam did at age 3.  If he transitions to the school district, he might have a teacher work with him at the house, much like Early Intervention now or he could qualify for special education preschool like Liam.  They do not evaluate until 2 years 10 months, so we won't know placement until next year. 

I spoke with the developmental pediatrician's office and it was decided that Ben needs to be seen and it sounds like he will get in before the end of the calendar year.  Lately, Ben has been toe walking more and he seems to be shutting down a lot more.  He has recently become afraid of baths and just sits in the tub, staring down, scratching his legs until they bleed, and screaming if we present him with any toys.  When he isn't shut down due to overstimulation, he is delightful.  His tantrums are decreasing and he has started using deep breathing to control his emotions.  He is trying to communicate more every day.  He is not at all interested in children, but seeks out Liam to play with at every opportunity.  I have alot of anxiety and fears over his development.  We only recently began to see his sweet smiles and I want to make sure they don't disappear again.

ER visits and regressions make for a rough week

This week has been rough. 

Liam went back to school; he loves school.  But the first two mornings, he cried and said he didn't want to go.  The third day, he came home with a note asking if he was okay at home as he was being distracted and tearful at school; this is not typical school behavior for him.  Liam is having a transition with his ABA therapy.  The tutor he has been working with for 3 months is having a baby soon and going on maternity leave so he is starting with a new tutor.  He has had two or three "mini-meltdowns" during every session within the last week; he normally only has 1 mini-meltdown a week during ABA. 

He just re-grouped from a full on major meltdown--the type I haven't seen in about 6 months.  I couldn't hear it happening and not get involved, especially as he is working with a less experienced tutor who was trying to talk him through it (talking doesn't work for full meltdowns).  I guided him to his beanbag and covered him with his weighted blanket.  The screaming continued for quite some time.  I realized how out of practice I was, as at one point, I dealt with huge meltdowns weekly.  I also confirmed the fact that childcare will be a challenge as few people are equipped to deal with something of that magnitude without training.  I still remember Dave's reaction the first time he saw one after coming home from deployment.  This is only the 3rd one Liam has had since Dave came home and Dave himself is clueless as how to manage one.

Then there was this:

Yesterday, Liam pushed over the boys' couch while him and Ben were on it.  Ben's face smacked directly into the step off the fireplace hearth.  His nose was bleeding, and his cheek got swollen and hard.  I called Dave to come home to help and took Ben into the Elmendorf ER.  We waited for 4 hours.  In the end, Dave came to join us while Liam worked with his ABA tutor.  I left before Ben was seen as it was time for Liam's ABA tutor to leave.  Ben was seen for less than 10  minutes and it was decided the nose wasn't broken.  I called Seattle Children's Hospital today and the nurse consulted the doctor and told me they wonn't know until they see Ben whether his nose is too swollen to go forward with the endoscopy on Monday.  I am really hoping that I don't travel 3 hours by plane and have Ben fast, only for the surgery to be cancelled.

Liam's first parent/teacher conference

Liam had his first parent/teacher conference on Wednesday.  Unfortunately for me, the night before he also had his first stomach bug.  The sweet boy was such a trooper about getting sick, but me and Dave were up all night with him.  He was better the next day, while we were total zombies.  My brain was very fuzzy when I went to his conference, but I did come away with lots of valuable information.

-Liam met all his speech goals in less than 2 months.  IEPs are written to last a year, so his is going to have to be re-written to update and make new speech goals.

-Liam has accomplished ALL pre-academic skills in the preschool curriculum.  His teacher said the only thing left to teach him is 6 year old material, and that isn't approrpiate, especially since he uses his strong academic skills as a social shield.  Making him smarter will hardly help the poor guy blend in with other kids.  At home, Liam is taking an interest in spelling and can now spell Ben and Mama, in addition to Liam.  At home, we don't discourage his academic interest, and I imagine he will always be ahead of the curve on academics.

-One of Liam's IEP goels is attending to "non-preferred activities" but his school hasn't found any non-preferred activities.  Somehow my high needs constantly trantruming toddler has morphed into a sweet, obedient,easy-going preschooler.  I am certainly not complaining about this.

-Liam continues to struggle with socialization.  He only engaged in pretend play with peers 16% of the time.  He loves his friends at school and when we get together, I watch how hard his classmates work to include Liam.  He just struggles with this area.  We need to make him stronger here b/c I watch him interact with typically developing peers and they aren't nearly as kind or willing to try so hard with Liam. He is already being isolated and left out if playground and open play type settings, and poor Liam responds by smiling at the mean brats that are sticking their tongues out at him and making fun of him.  I am so glad that school is a safe environment for him.

-Liam either doesn't exhibit his sensory seeking behavior at school or it isn't bad enough to get anyone's attention.  Liam engages in lots of crashing and vestibular sensory seeking at home, and I certainly find it disruptive, but I was told he doesn't do it at school so they don't feel a need for him to engage in OT. 

Liam really is a joy these days and I am amazed continually by how far he has come with therapy.  He is such a happier child than he was last November when he was diagnosed.

We made it

We are in Alaska!  It has been quite a journey, but we are loving the scenery and the weather.

We spent the last 3 weeks in a blur of moving and navigating the IEP system in TWO states.   IEPs need to be written BEFORE a student turns 3 years old. We were due to leave Alabama 6 days after Liam turned 3.  Alabama didn't want to write the IEP since it wouldn't be implemented, but Alaska wanted it written so Liam could get services ASAP. 

Then Alabama school system didn't have computer access (eye roll) and didn't want to hand write it.  In the end,they finished it a couple days before Liam turned 3, and it was hand written.  I thought we had a decent IEP....for what Montgomery could offer.  They assessed Liam as operating at the level of a 23 month old in 2 areas: social-emotional and adaptive skills (need I mention Ben is 17 months, so they are almost like twins with a 11 pound weight difference?) and his language at the level of a 2.5 year old.  For a 34% delay in 2 areas and a 25% delay in a 3rd, they offered 1 hour a week at his private preschool.

I knew Alaska had more services, but when they got his IEP, they offered the same services.  The problem?  Private preschools in Alaska don't take non-potty trained children......and Ben is closer to potty training then Liam.  I freaked out, and it was about 48 hours until we moved.  Eventually, I asked Alaska to re-look at his IEP....they had simply looked at what Alabama offered (assuming it was adequate,which it wasn't) rather than Liam's eligibility scores.  In the end, Liam was offered a special education slot at the local elementary school.

We enrolled him Tuesday, and he started today.  His school meets 5 days a week from 9-11am. There are 5 kids and 2 teachers. The room has an elevated reading cave, a dramatic arts area, a huge slide, sensory areas, and lots of space. The other children are all older than Liam and some only have language delays. It will be a great fit for him I think.

Adventures in Early Intervention

Liam continues to do well at school. He is excited to arrive every morning and runs into the classroom. Without fail, he is upset when I say good-bye and cries, but I watch him through the one-way mirror and he is happy within moments. When I come to pick him up, he is playing happily, usually singing and dancing. He is always happy to see me, grabs my hand, says "bye bye", and pulls me out the door. Liam's teachers tell me he is a sweet boy, but that is no surprise. They tell me that he is starting to join the group more and play better with others, and that is a big step in the right direction. Last week, he had a meltdown when it was time to leave his room for bible study, but this week he happily went and participated.

We got his Early Intervention Assessment yesterday, and while nothing in it were surprising, it is hard to see your child summed up in black and white. According to the assessment, Liam is performing above age level in cognitive skills and motor skills. With the ability to count to sixteen and letter recognition, I had no doubts about his intellectual capabilities, but it is still nice to read. I was not surprised that he is ahead on his motor skills as he has lots of energy. He is slightly delayed in adaptive skills. He has a 7 month delay in social/emotional skills, and his language skills are 7 to 10 months delayed.

I notice that many people are confused by Liam's language abilities. He can count, sing songs, and has books memorized. His actual word count is somewhere around 100. He can parrot phrases and sentences. However, he does not use language to communicate. This is what I find most worrying.

I am noticing a big improvement with occupational therapy. I am not finding much improvement in speech, unfortunately. He is adding words slowly, and I am hearing more words during the day. He still doesn't really use language to communicate and doesn't show any interest in talking to me. I try to focus on the progress and not get down about the speech coming slowly, but it can be hard.

Liam reading a book:

Liam's first day of school

Liam's first day of preschool was today. I cried as I left him, but he was happily coloring. When I looked in a few minutes later, he was crying. Let's hope drop-off gets eaasier tomorrow.

Change is coming

Liam starts preschool on Tuesday. I have been looking forward to this day since Ben was born, but I am terrified. Liam had severe separation anxiety starting at 2 months. For a period, he wouldn't even let Dave hold him. In response, I would become highly anxious whenever I left him. I have seldom left him due to the anxiety both of us experience when we apart.

These days Liam does not experience separation anxiety anymore, and he did fine for the 3.5 days I was in the hospital for Ben's birth. I worry about him more than ever however, as he falls behind verbally and socially from his peers. I am hoping that his preschool will help with that.

We attended the Grace Point preschool Open House this week, and Liam loved his classroom as the pictures show. He'll be in class with 9 other two year olds with birthdays ranging from April until September. He'll have 2 teachers: Miss Katie and Miss Shanna.

I am terrified for Tuesday. I can sense change coming and hope both Liam and I can weather the changes.