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?