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!