Back to our regulary scheduled (and wonderful) program

 Where is that bus?

Sorry its been awhile since I posted, but it took awhile to come down from that high from Will's birthday.

Things are going well enough.  School keeps on going well, I've received several more amazing emails from Will's teacher.  Will's interaction and sentence structure is slowing coming along too.  As little as a few months ago you could ask him "What's this?" (lion) and his replay would have been "lion",  then his response became "a lion" to today its "It's a lion."  I see this as a big gain for him.

We are now able to tell him to his question "Where's the gigi?" (Gigi aka beloved blanket) "It's upstairs on your bed go up and get it."  AND HE DOES!  Even in the last 6 months or so is would have been SO much more involved in that exchange.  Our response would have been closer to "on bed.....upstairs......Will go get it."

When I started this blog Will also couldn't really tell me what hurt when he was sick.  Just this past week he told me "tummy hurt" when he was suffering from a stomach bug.

All of this equals progress to this mom.  Compared to others it may seem like small potatoes, but in this house its great gains.  Sometimes my husband and I feel kind of lucky as this language issue has kept Will innocent longer.  He is the most easy going kid and now that he understands more complies so willingly to requests. We don't have bad attitude or too much acting out.  Now I don't know how long this will last, but I'm happy that right now I have a 5 year old who is such a sweet, happy easy kid.

Am I living in an alternate universe?

Do you remember in the movie the Sound of Music???  The scene where they sing "I must of have done something good." Well that is how I am feeling right now.  I have been reading recently blogs, message boards of fellow mothers with "different" kids and a lot of them are doing the beginning of the school year struggle.  A few have gone so far as removing their child from the daycare/preschool/Kindergarten, then deal with people who don’t want to help their child. 

Well let me tell you a little story that happened yesterday, which happened to have been Will’s 5th birthday........

As Will’s 5th birthday only happens once I decided to bring in donuts and cider to celebrate his day with his classmates.  I showed up while the class was in Spanish and set up the cups, plates, and napkins.  Then all the kids come in.  Will is all smiles saying “You came in!”  and trying to show me all the cool animals in the classroom.  His friends all gathered around him asking how old he is and he was happy to reply “Five years old”.  That response alone would have made his day for me but wait it gets so much better.

I turn to look and see Will’s special ed teacher.  I’ve not met her in person, but talked to her briefly on the phone a few weeks back.  A bit nervous on what she would say to me as Will’s 5 week IEP meeting was later in the day I approached her cautiously.  What proceeded to happen then I couldn’t have imagined even if I tried. I was told how much she loves Will and was asked how I managed to figure out what was going on with him and had taken him to the right doctors.  Then she says “The Einstein Syndrome is so fascinating. At first I was a bit of a skeptic, but as I read it and he had all of the traits listed I became convinced he isn’t on the spectrum.”  I was completely flummoxed!   “You read the book?!”  I asked  “Yes and I made my assistant read it too.  She thought he probably had Aspergers, now I am convincing everyone with this book that is not the case.”  She went on to tell me what a wonderful job I’m doing with Will and how she has applied things she read in the book in helping Will in the classroom. 

I practically skipped out of the school that morning.  But me being me was still nervous about the IEP review meeting later that day. By nature and hearing others past bad experiences I always enter these meeting cautiously.  I need not have worried.  Carl came with me and counting us there were 9 people in the room all to discuss Will.  Not intimidating in the least right?  What proceeded to happen was a big love fest of Will.  I was prepared for a meeting of  “Will can’t do this.....he can’t do that”  Instead it was ...... “He can do this....He is doing that!”  Everyone one of these teachers/aids/therapists had great things to say about Will.  A few wanted to change his IEP goals as he had met some already and to set up others that were more appropriate for him.  Also they wanted to take off things that were no longer happening anymore, potty training and some sensory stuff.  These were things I wanted removed, but felt it wasn’t worth the effort to fight over as this point, so having them want to voluntarily take then off was wonderful.  Most said he was easily correctable, direct-able and a pleasure to work with.  We heard how his classmates love him, how all the girls circle around him and help him with his lunch box and how they all wave goodbye to him when he leaves for his half day.  My heart was so full from that meeting. Will’s OT told me she emailed his last school district OT with one line “I heart Will” 

Then Will’s teacher gave us a copy of her report that went in his file sorry for the length, but I need to right this out......

10-12-10

"Will is a very bright, curious child.  He has an amazing smile that lights up the room.  He is loved and cared for by his peers.  The often write him notes or cards during center time.  They invite him to join them on the carpet.  Some days Will sits at circle time and other days he prefers to watch or listen from the perimeter of the rug or while playing in an adjoining area.  Even if he is engaged with another activity, Will is often  smiling and watching what the group is doing/learning.   He attends keenly to what is going on around him.  When he is interested in an activity or a toy, he becomes fully engrossed in what he is doing.  He is excited about math, counting, computers, magnetic letters and words! He read the entire poem of the week aloud to the class.  He reads aloud from Dr. Seuss books.  Last week during the engineering center, he joined a small group of classmates as they constructed a large building and added animals to it.  He joined me at the semi-circle table to work for 5 or 20 minutes on a task.  He enjoys Spanish class and likes to use the instruments and move to the music.  He is excited about the flannel board puppets that were used to tell the story one day.  He goes to hall meeting and sits amongst the children from various classrooms  and he goes to the auditorium with his Mr. K buddy and sits attentively for the most part.  He will listen to a re-direction from an older child and adjust his behavior.  For example, he will remove this feet from the back of the seat when asked.  He is a joy to work with and he teaches me so much every day.  Thank you for sharing such a fantastic little boy with me and with our classroom.”

I don’t think I could ask for more....do you?  Oh yeah after this love fest for Will we had a birthday party with family.  For the first time he really got into the idea of presents, candles on his cake, and enjoyed the party immensely.

It was a great day to start off 5!

Been afraid to say this outloud.....

Its been before school started that I've updated this blog, and maybe someone may wonder why.  Could it be the poops hit the fan? 

Truthfully school seems to be going pretty well.  I've spent this last week wondering when the other shoe was going to drop and didn't want to jinks anything by posting how wonderful the school has been.

The first day of school went down as a happy day for Will and Mommy.  He was so excited to ride the bus!  I had made him his own book "Will Goes to Kindergarten" and I think reading it every night and seeing himself in his classroom and pictures of his teacher, locker, etc. really helped with the adjustment. 

I've gotten either nice emails or phone calls from Will's support staff.  His SLP seems to want to utilizes the techniques the Camaratas had listed in their last report, so that is nice.  His teacher is already using the techniques I've given her before school started.  Right now their is NO pressure for Will to conform in the classroom.  If he doesn't want to participate he doesn't and when he does I have a feeling is rewarded and encouraged.  I've also been told he is not a distraction nor does he present any disiplinary issues, so that is good. He has been described by the school psychologist as easily distracted, to which I replied "well if you watched a french film with no subtitles you tell me how distracted you would be."  I think this got the point across.

The call from the special ed teacher that works with Will informed me that there was a meeting about Will and I guess the information that I wanted him to repeat K was discussed and agreed with.  She told me that are treating Will like a preschool student who happens to be taking K this year and will repeat next year.  Right now we are all concentrating on getting Will used to the routine and getting him more socialized and participating with the class.

More complex language is starting to creep in as well, but the scripting still continues.  So right now we are going with the flow and taking it one day at a time.  Hears to hoping we end the year as happy as we started it, for Will and I.

Feeling blessed - Some things are meant to be.

Well if anyone actually is reading this blog you know school choices for Will have been the bane of my existence since last February, when we went through the whole K vs. preschool,  private vs. public.  Then the unfortunate non-acceptance from said private school (Grrrr that STILL makes me so mad - I heard they only have 6 kids this year for K, serves them right).

Anyway the last part of this ongoing saga the last minute switch to our school of choice.  This school is an international baccalaureate school.  I could try to explain it, but I'm not to adept at it so here is a link if you want to learn more.  IB information  After taking a tour of the school and going to one of their informational parent nights I was sold.  One thing I liked the most is they combine grades and the kids get the same teacher for both years.  So K is alone than grades 1-2, 3-4, 5-6 are together.  It's pretty cool.


We got this last minute spot that had I not brought my cell phone to our cabin in the woods and had a signal not made it too my phone we would have missed our chance to go.  Some times I think things really happen for a reason.  


Yesterday we had our meeting with Will's teacher.  I had taken Will to the open house on Wed. night and had gotten this wonderful email from his teacher on Thursday.

"...It was great to spend time with you and William last night. I enjoyed speaking with you and watching William as he was engaged in some activities in the room. He is a beautiful, bright and amazing young man.  I am looking forward to seeing you and your husband tomorrow morning. .....I am so excited to have William in our classroom. I will do everything possible to make sure he is appropriately challenged and always enjoying his time at school. See you soon,..."

I teared up just reading it and was hoping our meeting would go well.  It did!  I honestly do not think I could have hand picked a better teacher.  As I mentioned before in an earlier entry she has a child (19 now) that has high functioning autism, or so they told her.  She told me now she is not so sure on the diagnosis, but back then there was so little information about it.  The interesting thing is she would not let the school give him an autism label and fought and got a speech/language impairment label.   This information alone made me happy.  I shared with her the doctors reports from Nashville and told them a little bit about them.  She was totally open and supportive of our decisions to get answers for Will and wanted their email so she could "glean info from them".  Also we talked about how K this year was not what we really wanted for Will which is why we want him to repeat it again next year.  Her response was this was the best decision we could make.  "Give him the gift of time" were her words.  I couldn't agree more.  


We talked for 2 hours with her asking all kinds of wonderful questions on how Will learns, his interests, likes dislikes.  We were very frank about our concerns of Will's scripting and how we thought it could be an obstacle.  Evidently Will will not be her first student who has scripted and she was not at all concerned.  


Am I dreaming.......I hope I never wake up from this.  School starts in 4 days and for the first time in forever I am optimistic and excited to see how Will flourishes.  Fingers crossed.

Riding a wave of High Emotions

Yeah the title says volumes doesn't it?  I'm headed to my 2nd glass of wine right now.  What has me in such a state you wonder?  The same stupid crap.... school, my child etc. etc.

Today was a red letter day in this house.  We started it off with Will's 5 year routine physical.  A bit early, but he HAD to have his last vaccinations before the start of school.  He is growing like a weed, 90 something percentile for height, 88 for weight.  Tall and slim is what the doctor said.  So what is so bad about that??? Well Will HATES the doctor.  Since his memory is so wonderful he knows exactly what happens every time he goes there.....ouchies AKA shots.  Will's recall memory started as soon as we drove up to the office telling us that "Daddy go to doctor".  He waited beautifully in the waiting room, but as soon as his name was called the battle began.  Height and weight were a bit of a battle and then we went back to the exam room.  Fine again as we waited and then the doctor came in.  Truth be told he did AMAZING  compared to his 4 year exam and complied with all the exam as long as I came up with ways for him to comply.  The doctor asked him some questions and Will actually responded to the ones he could, which was nice.  She told us she was extremely happy with his language progress and thought he may just flourish in K this year.    Then it was time for the shots.  I can still hear, but I am positive I lost some hearing due to the screeching.  The nurse just about ran out when she tied to talk to Will after she gave the shots and he screamed at her with such passion I've not seen before.

We were both drained after that and after some mindless time watching the boob tube, both Will and I took a nap together upstairs.  I needed my energy for part II of the day... school open house.

As soon as we woke up I told Will we were going to ride a bus and meet his new teacher and school.  He seemed okay with it and even when asked what we were going to do at diner replied "teacher".  Again he did well enough.  Rode the bus like a champ and would have rode it again and again if I had let him.  Then we went on to meet the teacher,  Mrs. Pilon. 

If you read my blog you're probably wondering what happened to Mrs. Glasgens.  Well last Thurday we found out Will had gotten a last minute spot at our school of choice.  It has a lottery system in which we entered but lost sometime in March.  I guess we were high on the wait list and someone dropped out of school last week opening up a spot for Will.

I checked out his new teacher and was a bit amazed at our luck.  She won a teaching excellence award and went to the White House last year to meet President Obama.  Pretty cool right?  But was she the right teacher for Will?

I dropped in on her classroom on Tuesday and immediately was feeling better about school.  I shared a little about Will and she told me she kind of understood since she has a 19 year old son with high functioning Autism and he didn't talk until 5, so she knew the anxiety I was feeling with Will.

Sorry got off the story there.  So the classroom visit went fairly well.  Will loved her room with all the toys and animals.  She has a snake, tarantula, bearded dragons, turtle an iguana and some other furry creatures.  She chatted with me again and we set up a meeting for Friday to discuss Will.  She was very reassuring and that was a good thing.  I was dreading a teacher who wanted only round pegs and would be non accepting of my cute square peg.

I just wish I had a heads up all those years ago that my preconceived ideas on school and how my child would be could be so entirely different than reality. 

School starts in a week.  I'm not sure I'm going to make it......Will on the other hand can't wait to ride the bus again.  Go figure.

Another first - - Plus A quick note to Mrs. Glasgens

Just a quick post to notate a big deal in this household.  Yesterday I was off with a friend enjoying some mommy alone time when I received a text from my husband.  It stated "Will just said I like Uncle John".  Okay well this may not seem like a big deal, but IT IS.  Will has never expressed a like unprompted before.  Oh you can ask him if he likes something and 99% of the time he'll say yes.....even if he hates it.  So to volunteer with language he likes something is a very BIG deal.  I foresee big things to come.....

Mrs. Glasgens,

Just sending you a quick note congratulating you for getting assigned my son Will for your kindergarten class this year. You must feel so blessed to be able to be such a big influence on Will and he you.  You see if you allow it, Will can challenge you to be the best teacher you ever thought you could be.  If you simply can open your eyes, heart and mind you will be delighted on how much he knows and how willing he is to learn from you.  You may have to use some unconvential teaching methods, but I promise you that by doing this not only will Will benefit, but so will others who undoubtedly come after him.

You lucky teacher you.  Enjoy the year.

Sincerly,
Will's Lucky Mother

A Little School Freak Out - I feel entitled.

Soooooo its now Aug 10th.  School starts for Will September 8th.  It was about 2 days ago that I started to really think about Will going to school.  I've been watching him all summer going to "speech school".  This is a class of 5 kids all with speech/language issues that meets 2x/week for 1.5 hours.  He has the same teacher he had this last school year.  In the beginning of summer I was really impressed with Will.  He answered most questions asked of him and tried to answer for others.  He seems to attend fairly well.  Cut to the end of summer and he seems to be checking out a bit, acting out a bit too. 

I know I am suppose to have the happy optimistic outlook for how schools going to go this year, but right now I'm panicking.  The good news is that since he is repeating K next year whenever I hear he's not where his peers are I can say this is why we are giving him another year to master these skills.

So what have I decided to do to help ease this time for Will???.......I went shopping.  Because the truth is there isn't too much I can do to determine how successful Will is this school year, but by golly that kid will have new scuff free shoes to wear.  Of course I plan to be in his teacher's/OT/ST ear all year long and volunteer in the school as much as they'll let me (yes - do know how fortunate I am that I can stay at home and do this.  I am VERY thankful.)  But in truth Will's success will in large part fall on him.  Seems like a lot to ask of a 4 year old - don't you think? 

One more month to enjoy.....and worry. Oy.

Perspective - it's a strange thing

Just a quick note on perspective.  As I've written in the past Will has a Mixed Expressive Receptive Language Disorder (MERLD- for short).  He got this diagnosis at 3.5 and again at 4.5 from the Camarata's.  This past year we took Will for a follow-up to see how much progress he had made.

Unfortunately Mary couldn't get though all of the language testing on that day (she had forgotten about our appointment and we started an hour late.)  I told her Will's teacher was testing his language as well and Mary requested I send along these test results to help her finish and round out her report.

Well I finally got around to sending her the information she needed yesterday (we went for the visit in February and I had Will's test results in May).  I know slacker, but in truth I was dreading a bit sending the results, and I wanted to just concentrate on how well Will is doing right now in the real world and not on some test.

The teacher's results said Will was in the 5th percentile for Receptive Language and .3 percentile for Expressive Language.

Let's be honest when you read a report that states numbers like these it's a bit depressing, which is another reason I just put off sending the results off to Mary.

About 12 hours after I sent that email I got a reply from Mary that follows;

"Great. I will get the report right off.  I am also happy to hear about how the summer is going language-wise...and fun-wise for Will. It is nice to see the gains in Receptive Language as per the CELF-PRE. Nice! Gains in receptive language most often precede expressive gains. This bodes well. I will get the report to you. Good to hear from you. Mary Camarata."

I guess I need to leave interpreting test results to the experts. After reading this I realized Mary was right already as this test was given back in April/May and Will has shown some bigger gains expressively this summer.

Just one more reason I feel blessed to have found wonderful doctors for Will.

Perspective - it's a strange thing.

Growing up

First off, sorry it's been awhile since my last post.  School finished up and we were enjoying a week long visit from some old friends, a July 4th party etc, etc. 

We had a lot on our plate while our friends were here and I did worry a bit on how Will would react to all new people staying at the house and coming over for a party.  I needn't have worried.  Will was incredible.  I think it helped our friends have no kids yet and were a bit reserved with Will and let him warm up to them in his own time.  The first full day of their visit he brought me his shoes and and told me "Put on shoes.  Go outside and talk to CJ."  I did as requested and watched amazed as my son "talked" to CJ outside on our porch steps.  Now I am not sure what he was saying, and my money is on some script from Super Why that morning, but his guestures and intense intent to get his point across read load and clear to this mom.

For our forth of July party it was more people and one new child at the house.  Will had met Andrew about 6 months ago at Christmas time.  Andrew is only 2.5 and only 1 inch shorter than Will, and Will is even tall for his age!  Anyhow Will was wonderful sharing toys and holding hands to take Andrew out to his slide.  Very sweet.  He even crawled in my bed pulled up the covers and yelled "Andrew in bed and snuggle!".  While this was a very sincere invite Andrew's mother and myself let this pass. ;-)

At the end of our friends visit something happened that I recognized as a big deal, but it went by everyone else without notice.  Will had been playing in the rain and was soaked going down his slide in all the water.  About 1.5 hours later I picked him up to cuddle and exclaimed "Will you're all well still".  Not expecting a response I heard "it's from the slide".  This to me was a BIG DEAL as unless you ask Will a direct question he usually doesn't respond verbally, so this was wonderful to my ears.

To round off the week we took Will everywhere with us while taking our friends site seeing.  Truthfully we don't hide Will in the house, but usually go the route of grandparent babysitter and some mommy and daddy free time than worry how he'll do on outings.  Again he did wonderfully!  Dinning out, going on car rides, grocery shopping were all non eventful for this LT.  The highlight of the week seeing the "giant waterfall" aka Niagara Falls and riding the Maid of the Mist.  Will loved it all and rolled with everything we challenged him with.  I think he cried once during our friends week long visit and that may have been under a minute in length.

I guess this LT is really growing up.  I couldn't be prouder of him.

Will's late talking history

I have been reluctant to share Will's complete story, as he seems to be a bit unique in his LT history, but then again all of our LTs develop differently and I guess Will is no exception. So here we go.....

As a baby Will was completely "normal" so to speak. He was always on the end of normal time lines to reach milestones, sitting, crawling, walking. Now talking came right along when it should, Mommy, Daddy, etc. at about 12 months. After 14 months Will was walking, talking and perfectly "normal".

By 18 months we thought we may have a little genius on our hands. Will had taught himself his colors from his Eric Carle book. By 20 months he counted to 20 in the car by himself. Right around two he also showed he knew his letters (upper and lower) and their phonetic sounds. By 2.5 he would spell words with his magnets on the fridge.

What we didn't see at 2 was the combination of two words together. My friends kids were starting with simple sentences and mine, well we thought he was concentrating on learning other things. It should be noted that we moved when Will was 18months and at that check-up his doctor commented on what a delightful baby Will was and how he'd miss him at his practice.

At bit concerned at this point we took Will to the local college to have him evaluated by their speech department. I wasn't sure how Will would do he was starting to show his preference to do things his own way right about then. Will did great on the tests, could label and point to things requested. They told me he didn't qualify for services, but if he still wasn't combining 2 words in 6 months to have him reevaluated.

So by 2.8 months when he was still only using one word we found out we missed the boat on EI and to go to the local school district for an eval. Funny how 6-7 months can change everything. Now Will was "really" behind not saying 2-3 word sentences and he needed speech therapy and OT since he couldn't string beads on a string.....OK.

Now I will say at this point 2-2.5 Will was demonstrating some sensory issues. He loved to put water, rocks, mulch over his head. It was a bit strange, but we figured it wasn't hurting anything and maybe he'd grow out of it --he did, by about 3.5.

We moved again right before Will's third birthday and started his first therapies at this time too. I could sense the judgment from Will's SP and was getting worried about exactly what was going on with his language development. We could always understand Will his pronunciation was perfect or at least as perfect as any kids his age.

This is about the time I figured I would try to get an appointment with the C's. Then a really wonderful thing happened a light switched on and Will could suddenly put 2, 3, 4 words together to make very simple sentences. We were thrilled and had more hope for the future. Will also demonstrated that he had taught himself to read and would read simple story books to us.

On the downside this was also when Will was able to start scripting. His amazing memory allowed him to recite his favorite TV shows over and over and over again. From encouragement from the school district I enrolled Will in preschool. Of course he didn't comply with circle time, crafts, etc and preferred to play with letters on the easel. He was the weird kid in class, not able to sit still for family day, fieldtrips etc. Preschool to me was just stress, but Will did like it so we went along for the ride.

Then we made the trip to the C's. I was told unequivocally that Will was not autistic, that he may be gifted, and had an IQ of 126. The news was good, start saving for college because he WILL go and will have a bright future. On the downside for a few years Will would struggle and we would have all sorts of issues with his school district until he "catches up". Third to forth grade would be the catch up years for Will, but until then he had to overcome a pretty bad language disorder.

So here we are a little over a year later (took another trip to the C's - good progress- slow but good) and we are still super scripting. One great thing, I was able to get Will into a wonderful integrated speech and language preschool. He has shown increased interest in his peers, but his lack of language and scripting has kept him still isolated from others. His sentences are still 3-5 words, but he is sharing with us what he sees/hears/wants and sometimes will tell us what he did that day.

He is still a bit left of center on things (PICKY PICKY eater, scripter, super shy with new people/kids, could play with letters and spell 10 hours a day) and that alone can keep me up nights, but I do have lots of hope for the future. In general Will is an easy going happy kid, who has dealt with his lack of speech with grace and happiness. He always seems to have a smile on his face and is pretty happy to go with the flow.

Next year we start our first of two years of Kindergarten (I made the principal agree to letting Will repeat before I enrolled him). I hope to have lots of positive things to report during and after year 5.

If you read all of this, thanks! It felt good to get it all out and down on "paper".

Reposted from Natural Late Talkers forums.

Yep my kid is weird. Yeah I said it, so what.

I haven't posted for a bit, because I've been struggling with the idea that my son may never be a cookie cutter kid.  His mannerisms, picky picky eating, scripting, desire to march to his own drummer are all things that have him pouring over the perfect mold.

This is something I think of EVERY DAY.  Its hard not to when the first thing you see in the morning is your son's face peaking under your covers 2 inches from your face then him immedietly talking out the Super Why episode he wants to watch that morning.  Sometimes I get the "hi mommy", but not that often.

Now I just have to find a way to accept that he may never, even with new language "fit in" so to speak.  Don't get me wrong I have hope, but I think acceptance of his differences will bring me and Will more peace right now.  Having only one child is sometimes a good thing, as I don't really know in detail what typical kids his age do.  On the other had I feel like I spend a little time everyday mourning what I had envisioned his childhood to be like, which I know is not productive.

Today pushed me right over the edge as I turned the tables on Will and demanded he answer my question in the middle of his script this morning.  I changed the words and tried to make him answer me.  This was not successful and ending up with Will screaming and crying asking me to sing him songs (to calm him down).  Afterward I felt terrible.  Why had I done this?  The answer was for myself.  Making him so upset had no benefit for him and in fact took away the one person who was suppose to be there for him and accept him.  It hit me how selfish I'd been, pushing what I wanted him to be, and not allowing Will to be who he is, which is a wonderfully quirky little boy with the best smile on the planet.

So now I guess I have to learn from this colossal mistake and move on trying to be more accepting and let Will be Will, however that ends up.  He didn't ask to be born and he isn't here to make me happy, that is all my doing and I need to honor Will's individuality and journey in this world.

Time to burn that mold.

Here is a video of my lovely child and the reason I need an attitude adjustment.  Who couldn't love and accept this little guy?

Feeling like part of the team

Well we finally had it....the dreaded IEP meeting.  I went in with low expectations, and was happily surprised with the way the meeting went and what decisions were made for Will.

Since we were transitioning from pre-school age to school age there was MANY people at this meeting.  Seven school personnel to our two parents.  Despite being outnumbered my husband and I felt like we were listened to and included on decisions for Will next year.  We were told he would go from "a child with a disability" label (which all pre-school IEP kids get) to "speech and language impairment" label.  The chairperson said decisions on Will's schooling would be made through that label's lens.  We were very happy with this label and even more happy we didn't have to fight off an undesirable one.  

The review of Will's progress by his teacher was very even sided.  Reports on his speech testing (still VERY behind) balanced nicely with his progress socially.  Often times I find these meetings are about what is wrong with these kids, not on also where their growth or strengths lie.

So it looks like next year its 1/2 Kindergarten with speech/OT/special ed push-ins.  Now we are just waffling on whether or not we should let him go for the whole day, or wait until next year for a full day experience. 

Oh and I did manage to get the "input" goal from Will's OT removed easily enough.  After a open and frank conversation, the OT gave no resistance to removing the goal and put in an addendum the next day.  I don't think she had anything invested in Will so removing a goal was a "no brainer" for her "no brain".

Special thanks to fellow blogger Pia and her Crack in the Light blog for the IEP alert level pic.

Cruising along not letting bumps in the road derail progress

Been a little while since I've posted.  Wills IEP meeting is in a few weeks and until then I'm holding my breath that all the promises from the school district will hold up at the meeting.  For the most part things have been going along well.  We spent our Spring Break at our family Camp and Will had the best time.  Got to hold his first fish.  He loved it so much I just bought him his first fishing pole.  The new surroundings always seem to bring out more language and interaction with Will.  Well I guess the place is only 800sq.ft. so togetherness of the family is sort of inevitable!

Had Will's meeting with his teacher and all that was reported went right along with what I knew from Will.  Still testing with a moderate delay with receptive language and a severe delay in his expressive language, which I knew without formal testing.  The teacher who is wonderful made nice comments on the progress Will has made trying to be more social at school, which is nice for her to note.  She also has asked for Summer services for Will which will be the same class he took last summer, but this time the school district will pay for it (at $120/week I'm relieved.)  She also told me she intends to bring up the idea of having an aid for Will next year, or at least an evaluation in Oct/Nov. to see if he needs one.  So all in all a good meeting.

We did not however go over the OT report, since she isn't his OT.  I got that report the following week of Spring Break.  Well that was......hmmmm well surprising.  The report on his progress was good he is at about 85% of the majority of his goals.  What wasn't so nice was the formal re-evaluation he received from another new OT.  It seems Will didn't want to comply with the new OT, surprising?, I think not.  Well the report states that testing was very difficult and not all tests were finished.  This didn't seem to stop the tester from giving final test results and giving some "wonderful" observations and hearsay in the rest of the report.  It seems Will is a child that needs to "grow-up", and has outbursts and "temper tantrums".  Okay, did she observe these things during the whole 1/2 hour she was there?  If not, is it professional to put these descriptions of Will in her report?  Funny his teacher has never told me of these temper tantrums, nor have a witnessed said outbursts at home.  Will is a fall apart crying kid, not the laying on the floor meltdown screaming kid.  I do not consider crying temper tantrums, but what the hell do I know, I'm just his mother.  The best part was at the end of the report where its reported that a Sensory Profile was given to me and his teacher (I think it was his regular OT).  Evidently Will has Moderate to Severe Sensory issues in regards to distractions.  Now this is all from the schools profile, NOT mine.  There is one sentence reference that "it should be noted the home profile was less".  The interesting thing at the end of the report they say he has Mild to Moderate sensory issues. (It makes me wonder if she just copy and pastes the childs name on the report and changes a few things.)

I have decided to take a deep breath and just ingore this ignorant women and her testing.  I am very proud of myself that until writing this I have not obsessed over it.  I talked to Will's diagnosing doctor and her advice was just what I had planned on.....ignore it.  Next year Will will be back to his first OT who also had me fill out a Sensory Profile as well and said "I just don't see any sensory issues with Will"  So this Mom is just going to run right over this bump in the road and look forward to forgetting this woman ever had the fortune of meeting my son.

PS 95% potty trained - YES!!!

Update 5/7/10:  After writing this post I decided to reread the evaluation to see if it was as bad as I remembered.  It was worse actually.  What I did find was the new goals the OT wrote for Will for next year.  Most were completely fine until the last set of goals stating Will should receive "input" then comply to a predetermined activity for different time limits.  

I decided I would have to have these goals formally removed from Will's IEP during the May meeting, shouldn't be a big deal as he does not have a diagnosis of Sensory issues from either of his doctors, so there should be no need for sensory "input".

The funny thing is I mentioned his OT report to his teacher with my concerns.  It seems as I am not the only parent to complain and there were A LOT of complaining parents about the testing and lack of professional reporting by the examiner.  The teacher expressed sincere disappointment with company that conducted the OT tests.  It seems that there may be something that can be done since more than just this little ol' mom expressed her concerns.

Well at least I'm not alone.

Wow can this be real?

Okay so I am completely flabergasted!  I am happy that I did go into my meeting with the school district open minded. 

So without having to drag out an advocate, attorney, or even asking for what I really wanted for Will's education, it has landed on my lap.  Today was a very nice meeting with the pre-school psychologist and principal. They offered an integrated classroom (5 IEP kids the rest "typical") for 1/2 day (they don't half day, he'll be the only one) with the confirmation that if I want him to (and I do) he WILL repeat next year!

Truthfully I am still a bit stunned that this all went down without me having to complain to the school district what I really wanted for Will.   Shocking to me that they came through for him.  His IEP meeting is May 21 and I think until then I will still be holding my breath for all this to work out.

Feeling blessed today.

It's just freakin' Kindergarten

Just when I think decisions on Will's school future for next year are all settled, the school district tosses in a money wrench. I got another call from the school's psychologist wanting to set up a meeting with me and the principal of our local elementary school.  She went to view Will last week with the elementary school psychologist (she is the one for pre-school services) and told me she understood my concerns for keeping Will back a year before entering Kindergarten.  So now she is proposing that we work out a situation where Will could maybe do a 1/2 day of school next year, but couldn't guarantee he could repeat.  O...K, but that is what I said I wanted for Will, so how is this going to help?

The best part was her saying that if he went to school next year his services could be done during the school day and this would be easier on me than having to drive him to them myself.  I felt like saying if I wanted easy I wouldn't have become a mother!  Really I drive him an hour everyday now just to go to the school I choose for him, I obviously am not interested in taking the easy route in regards to schooling decisions.

I am going to try and withhold anymore judgments and hear her and the principal out on Friday.  My main question is why, why is this so important to them?  I mean what is one freakin' year?  If I still lived in Michigan Will would go to young fives and I wouldn't have to go through all this crap. Ah well I did say I didn't want easy didn't I?

Check back on Friday for the meetings highlights and lowlights!

A Potty Mircle for Easter

I thought this time would never come.  I literally couldn't conceive of a time when my son would pee in a potty.  Theoretically I knew it would happen, but after 4.5 years of diaper changes it wasn't a strong feeling.

The best part was it happened on a lark.  This past weekend we got near 90 degress, which in April is VERY strange.  I had planned on starting the potty training for real in two weeks over Spring Break.  I had the rewards, potty doll, etc ready to go and we had talked about using the potty for the last few weeks.  On Sat.  I decided to drag out the kiddie pool since it would be months before we would be able to use it again.  For whatever reason I just put Will in his swim trunks no swimmy diapers.  After about 2 hours he asked to come inside to change the diaper.  Hmmmmm I gave it some thought and lied to my beautiful child.  "Mommy can't find the diapers, oh no!  Can you use the potty?"  At this point I ran down to the basement for his porta-potty and put it in the living room where we started playing Wii.  Will was still looking for the diapers "Where is it?  Where the diapers? I can't see them."

Now last week I volunteered at Will's school last week and told his aid, who has him sit on the potty everyday that I was starting potty training over the break.  I mentioned I was going to toss out the pull ups and go cold turkey.  She wondered if he understood that he should be his pee in the potty and suggested I put a pull up in the potty to help him make the connection.  At the time I thought she was grossly underestimating Will as I knew he has seen his mother and father pee varies times before.

At this point I start thinking maybe I'll try the pull up in the potty but know Will is no dummy and he would just pull that sucker out of the portable potty and put it on, so I had a thought of genius and cut the pull up up into sections and gave him one.  I told him to hold it to him and sit on the potty.  Within 5 minuets I had a full potty of pee!  We have now peed 7 or 8 times in the potty in the last 2 days!  I think this is a great start and I hope when we really go full throttle in 2 weeks it will go as well.  Cross your fingers!

Back into the light

Remember how I talked about the ups and downs?  How about Will doing his strange kid impersonation? Well we now are out of the strange kid stage again and have gotten some more language out of this LT. Today we has some nice progress.  We had to go and sign tax papers today so we all piled in the car and headed out to the accountant.  After doing our business we headed over to the nursery to look at some trees we want to add to the house etc.  On the way there we hear from the back seat "Where are we going?".  My husband and I were doing the "whaaaa whaaa, did he just ask what I think he asked?  It was the first time he asked a question like that.  Most of the time Will only asks questions to what he already knows the answers too.  He has asked where someone is and where his toys are, but not where are we going, so we were happy (although I did cry in the car- sue me!)

Later in the day we had a nice back and forth discussion that went like this.  (Will) McQueen and Ramone. . .(me) what? ... (Will) I want McQueen and Ramone. . .(me) where are they?. . .(Will) There are upstairs. . .(Will again) Mommy go get McQueen and Ramone. 

It was nice to have a back and forth interaction and for this I was a very happy mommy today.  Here's to more of these days in the future!

To be or not to be

Just another day in the life of.  Got a call from the local Elementary school asking if we were planning on enrolling Will in Kindergarten next year.  Gave a confident nope and that was the end of that.  I've found infinite peace with this decision.  Will will go to school, just preschool again.  Its not like the kids needs it for academics anyway!  Today I showed him a set of paints and I  asked him "what is this?" . .his response "ovals" ( I guess he knows his shapes).

On another note we are weeks away from trying in earnest potty training. I know I know "Will is almost 4.5 and he isn't trained?" is running through your head, but I'm telling you between the verbal delay and his lack of fine motor skills I didn't see the pressure to get him out of pull ups. . . .until now.  When your child can pee in his diaper take it off, toss it out and put another on without your help, well its time to get on the potty.  Unfortunately I still don't think this is going to go well.  We are going with the tossing the diapers out and going bare butt method.   Cross your fingers for me and say a prayer because in 3 weeks there will be no going back, ack!

The ups and downs of being an LT parent

Sorry it has been SOOOOOOOO long since my last post.  Unfortunately my lovely son accidentally dropped my laptop and its is still stuck in computer purgatory as some unknown part is on backorder until ??????  My husband took pity on me and bought me a new laptop for my birthday.  When the old computer finally comes home it is going to Will.

So the ups and downs of being an LT parent.  If I had been available to blog three weeks ago it would have been a BIG up.  We had just gotten back from a trip to Nashville TN to see the first doctor to diagnose him with Mixed Expressive Receptive Language Disorder.  Will did amazing on the flights out and the layovers.  Again we got complements on how well and quiet he is!  (Usually an old couple - who knew?)  The doctors said Will was coming along nicely since they saw him a year ago.  We haven't gotten the final report, but we left feeling really good about Will's future.  

We had been home for two days and went to take Will to his Kindergarden interview at the local private school.  ( My husband is a graduate).  Will did WONDERFUL!  We had informed and given the teacher all of the doctors reports and were very forthcoming with his language disorder.  The testing portion of the interview was a breeze for Will and when we were done he even picked up his toys.  We left with the teacher saying she thought it would work out and being very positive on having Will in her classroom.  She only said she would have the speech path look over the reports we gave her and get back to us.  BIG up for this LT.

The next thing we know we are getting a call from the University Hospital that our wait on their list (over 7 months!) was over and we could bring Will in the next day for a follow up appointment.   Will again did soooooo well and the doctor was very happy with his progress.  We left that appointment with the doctor saying he was more convinced then ever that Will was NOT ASD (yeah!!!) and that his language disorder was what was holding him back socially.

So yeah we were on a bunch of UP UP UP on this journey until, da, da, dummmmm we got the dreaded call from the private school telling us they didn't want Will in there school.  Actually they said they couldn't provide the services for him, which is a load of crap since the public schools are required to provide services to ANY child in private school or home-schooled.  So they were really saying they just didn't want Will.  Needless to say I barely got off the phone before the tears started.  I can't tell you how hard it is to have your flesh and blood rejected.  I know its only freaking (yea I made the decision not to swear on the blog, but in "real" life I was talking like a sailor!) Kindergarden, but its soooo heartbreaking to have your son denied anything in life.

On top of all of this Will has now chosen to do his "weirdo kid" impression again.  His scripting has picked up and his behavior is definitely right of center.  It makes you second guess all the positive feedback we've gotten this month and I HATE that.  We go through this "spells" every few months and then come out the other end with more speech, but until the end is here is can be tough one the heart of this mom.

Soo here is to all the UPs we've had this month and a big fuck you (sorry I had to do it) to all the people who can't see the wonderful potential in our beautiful LT and gave us the DOWNs of the month.

Sorry to be away, may be gone awhile yet

Well I have so much to write about, but I've been home on vacation last week and then went out of town and finally I come home to a broken computer.  I promise to write about the trip I just took to Nashville to see Will's doctor and the progress he has made, but for now I have to keep this short as I'm borrowing the husband's computer.  Hopefully it will be an easy fix. . .fingers crossed.  Write soon?

Random

Just another day in the life.  Happy to be back to our normal of Will back in school.  Next week is Winter Break so another week at home, but luckily my husband will be home with us. 

Tomorrow the family is headed to our first Open House for a private Kindergarten.  I pray that we love the teacher and she sees how special our little late talker is.

Back to a better Normal

Didn't post the last few days as it was the same old same old, fever vomiting, all in all not pretty.  On Friday Will started to perk up and I'd say by Sat. he was his same old self with an increased appetite. 

One thing that was really wonderful was that Will was completely wanting to be social since getting better.  He made so many more 4-5 word phases it was really wonderful.  We ended the weekend with him wanting to snuggle with his father on the couch and read him (yes he read to his Dad) The Cat in the Hat. 

I know a lot of LTs make huge progress around the time of 4.5.  Will is about 4.3 months old now and I sometimes have a hard time seeing this huge gain, BUT this weekend gave me a glimpse of what was yet to come.  I just truly love that kid! (especially now he is vomit free ;-)  )

Just another day of vomit

Sorry if the title offends, but I couldn't come up with anything else.  Will is still sick and vomiting, luckily only once today.  Luckily for me his attitude is always so happy making times when he is not feeling well easier on this mommy.  In fact one would assume he could be quite cranky most of the time as he cannot always get his point across to me, but he usually maintains his happy boy attitude 90% of the time (not too shabby - this kid skipped the terrible two's and three's)

Hopefully he will be feeling better tomorrow and I can get out of the house for awhile. I am getting a bad case of cabin fever.  I did get out long enough to get a new hairdo and some wine.  These two things should tide me over for a few more sick days.

Here's to a vomit free tomorrow.

Still home sick with too much internet time

Augh we are still all sick, Will being the worst with a high fever and occasional vomiting, at least today we have avoided the vomiting.  I have been stuck in this sick house for 3 days now and need to GET OUT!!  Doesn't look like this will be happening soon as Will is still hanging on to the fever. 

What happens when I stay home too much, I do internet trolling for information on Late Talking.  This invariably leaves me saddened, which is why I try not to do it often.  Today was interesting as I stumbled across a fellow blogger's blog about her child.  From what I could gather she had a bit of a run in with the Yahoo group to which I belong and love.  It seems she thought we all had our heads in the sand and should wake up and smell the autism so to speak.  Some posts had been deleted but I got the gist that members of my group stood up and said we were not denying autism but fighting to make sure that when it is diagnosed that is a correct diagnosis not one thrown out at a child who doesn't conform with the norms.

The interesting thing was I kept reading her entries and found her son's diagnosis came from a one hour appt. when he was around 2.  Flash forward to today about 2 years later and another doctor has revoked the first doctors diagnosis.

I don't want to get into specifics, but it just seemed another perfect example of how we are told these diagnosis from doctors when our children are so young and how often they can turn out to be wrong.  So to me its not about putting our head in the sand of denial but not in the sand of one size fits all diagnosis.

On a side note I want to thank my fellow blogger Jackie for helping me set up this blog. Without her it would never have gotten to day 5 or whatever its been so far.  So far its been a great way for me to have a one sided conversation about whatever is crossing this mind of mine.  I am not open to having  arguments with fellow commentators this is just a chronicle of Will's journey that I can look back on and see the progress he has made as time goes on.  It also will hopefully keep me from abscessing and help me enjoy this wonderful child I've been blessed with.

One of the many things that are harder with an LT

Okay so having a son with a language disorder isn't always easy, but most of the time since he is my only child and I don't have anything to compare too, parenting and being his mother comes mostly pretty easy except for a few things.

This morning it is my weekend day to get up.  (Sundays are mine, yeah we don't go to church you found me out.)  My husband nuged me to get up as the dog was whining to go out.  What I didn't hear was Will who every morning wakes me up to whatever TV show dialog he is running through his head.  So I let the dog out come back upstairs to find him awake and wrapped up in his blankets.  He just looked at me and said  "sleepy".  Now this is a good indicator he is not feeling well as he is always up and perky in the morning.  After he asks me to snuggle, which I do for about 15 minutes I get him to go downstairs where he again wants to snuggle and he falls asleep for another hour with me on the couch.

So you are probably wondering how this is harder than any other 4 years old child.  Here is where it gets more difficult.  Will can not tell me what is wrong when he is sick.  If his nose is running he says its "stuffy" and gets me a kleenex to wipe it, but other than that I am on my own to figure out if he has an upset stomach (a symptom I usually do not discover until he vomits - like this morning), a sore throat (he stops eating, but this could be for the tummy too) or whatever else a 4 year old germ magnet could have.

Luckily for me I have been able to at least comfort him which I think more than anything other than Advil or Tylenol is what all mothers do with a sick kid.  Lets hope he is better tomorrow.

Another day a better attitude

hjjjjwilliamwwwilliam (sorry I couldn't erase Will's contribution to this post.)

So today went much better in part because I wanted it to. I decided to concentrate on what matters, Will and how I need to put things in perspective. Yes school choices are difficult, much more so than some of my friends with kids the same age, but really they are 4. I know someday I will think back on this time and regret worrying over these decisions and not just enjoying my smiling, happy, beautiful son with all of his quirks included.

At some point this morning I was answering a post on a Yahoo group I belong to about a woman whose son is reading, but not talking and I took a trip down memory lane and looked at some older videos I have of Will reading, counting and doing his ABC's at very early ages. Some of these videos were taken before we suspected anything was wrong with Will, except that he seemed a crazily smart baby/little boy (he still is actually). I try to remember how I felt then and realize that besides his language disorder Will is the same gifted baby I was so proud then and still proud of now.

Having a pity party

Today is one of those days where I think of the saying God only give you what you can handle and think I am not too sure this is true. After another long talk with the school district I left feeling the same way I always do, sad and pissed that the system is so flawed for a child like Will. Trying to make a decision on where to put him in school next year has consumed my thoughts for the better part of two weeks now and before that was at least a thought bouncing along in my brain to think over from time to time. Now only do I have to find a school for Will I then have to convince them to take him. Having a child with developmental delays is a hard sell for some schools.

When I think rationally though I know there is the perfect school for him and that I will know it when I see it and talk to the teacher. For know I feel at least content knowing not sending Will to full day Kindergarten is the right decision. Now I just have to sort the rest out. . . .and continue to worry about potty training, but that problem is for another day.