Thursday, November 8, 2012

Sunny Day

And not just from the sunlight that is illuminating all of the red, yellow, brown, orange, and green leaves outside the windows.  Today has had so many rays of sunshine.

First, in their backpacks, were Bobby and Maya's first school photographs!  It's amazing to me that they are in preschool, let alone that they have "class" and "individual" photographs to mark it!
Can you believe it?  I have 3 year old preschoolers!!!

This week has been a good one, from a preschool standpoint, for Bobby.  His teacher said that Tuesday was a good day, and today, even with a pep rally and break in routine, wasn't bad.  Two parents contacted me to let me know that they saw the kids during the pep rally and an activity, and that things went well.  Bobby high-fived one of the mascots, and Maya went and hugged one!  He struggled, but it wasn't awful.  At one point, when he tried to pull the hair of one of the aides, she said "Bobby, please be nice," and he began to stroke the side of her face.  She said that she almost cried!  These people care so much for him and celebrate him; it's quite the sunshine.

We are building up to the Monday psychological eval, and I mentioned it to his teacher, letting her know that I would pass on the results and that we were preparing for a diagnosis of autism, since that is what the IU has asked the pychologist to evaluate for.  For us, it wont change anything.  Bobby is Bobby and we love him, every single piece of him.  She responded in a way that had me near tears: "No one wants that for their child, or a child they love, but that little word: "Autism" doesn't change anything about the child. Just because Bobby may be diagnosed autistic on Monday, doesn't mean he wasn't autistic yesterday, or a month ago, or a year ago...he'll still be the same Bobby no one can help but love."  Have I mentioned that we LOVE this woman?  She and her classroom aides are just awesome ladies.  They care for these kiddos like nothing I would have imagined.  We are so lucky.

On Tuesday, Bobby's BSC started at school.  I was lucky enough to chat with her afterwards (as I was in the pick-up line when she was leaving) and she was lovely.  She seemed very kind and intelligent; she really liked Miss M. and the classroom, and praised the way that they work with Bobby and all the children.  She also said that she 100% concurs that he needs a PCA to do well in the classroom, so it looks like we are all on the same page.  Now, it is on to convince the school district that this needs to happen in a timely manner.  At present, however, he has a SEIT for an hour on Thursdays and his BSC for an hour and a half on Thursdays; the BSC also comes for an hour and a half on Tuesdays.  We are still trying to get an OT and SLP from the district (he still has the private SLP), which they approved him for.  Based on Monday's eval, the info from the BSC, and all that we keep telling them (and that the school is telling them), we are trying to stay optimistic.  Services will only carry through this school year and next; if we choose to not enroll him in public school, we've been told he wont be eligible for services.  We are hopeful that his needs will be met and he will have better coping skills by the time he is 5 and kingergarten ready, but part of that means intensive help now.  So, we are working.  But I'm taking it as rays of sunshine that the help he does help is good help.

We're noticing small differences that tend to point to at least somewhere on the spectrum.  For example, Bobby's favorite color, to the exclusion of all others at times, is red.  There is research that shows that children who show signs of autism may see the color red differently that typical children, and that it may appear almost flourescent.  We always thought it was just his favorite color (and it may be just that and only that) but some of the meltdowns that have happened as a result of not having his favorite red clothes readily available, or after getting his clothes dirty and not having the option to change them, or of not being able to find his favorite train (James, the red one)... it makes you wonder.  And, hey, if it saves some of the tantrums, then I'll stock the whole damn closet with red clothes. 
Attack of the red shirt and gloves!  Brown is his second favorite color, so the pants worked since his red ones were all dirty.

Another thing that Peter brought up the other day is Bobby's eyes.  I used to say that his eyes were so dark that they were black; they looked this way because his pupil was so dilated that the brown was just a rim.  Because this is the way he's been for a while at least (honestly, I cant remember when I first used to comment on it), I would just say "oh, his eyes are almost black", or something the like.  Peter said that he had made note on a few ocassions where he thought 'huh, it's interesting Bobby's eyes are still dilated," but never thought much of it.  We never researched it because he has yearly opthamology appointments and no one ever said there was something wrong (of course, they always dilate his eyes even more then!).  The other day, Peter said, "Have you noticed Bobby's pupils aren't dilated anymore?"  I said I hadnt noticed; I mean, I hadnt noticed they were dilated to start with!  It didnt seem 'off' to me that his eyes were so black.  But then I looked, and I noticed again today.  Brown eyes.  His pupils were normally constricted; the brown was clearly visible.  I decided to look it up today and a lot of folks mention a connection between ASDs, dilated pupils, and a return to normal (or near normal) when gluten and casein is removed from the diet.

This stuff could all just be coincidental, but it's kind of creepy when it is so spot on.  And a quasi-ray of sunshine if this who GF/DF experiment is helping Bobby. 

After school, we get home and the kids watch an episode of Thomas and Friends (which drives me nuts but they like) while I make lunch, then we eat together, clean up, and they take their nap (which they are doing now).  Meals seem to be hit or miss with Bobby especially (although Maya has her moments).  Peter and I have noticed HUGE changes in him since changing his diet, mostly in verbal improvement, behavior, and a lessened appetite while maintaining good weight growth, positive bathroom activity, and better focus.  It's not the end yet, but it's a good start.  So, I make lunch and the kids come in: GF bread with strawberry jam, grapes, GF/DF corn spirals (like cheetos but no cheese and made with ingredients I can pronounce!), and a GF/DF brownie that I made this morning.  Maya normally eats well; Bobby, it all depends.  Today, he ate everything.  This morning, was a huge pancake morning for both of them (they LOVE pancakes), then a full lunch.  I was kind of suprised, actually.  No fighting, nothing.  Just eating... like typical 3 year olds... making conversation among themselves, asking for seconds where they wanted them...
Attack of the Pancake Eaters!!! 

Then, on to naptime.  Before nap, we pray.  This started with me standing between their beds, reciting the Hail Mary, then the Sign of the Cross (which they were do, but not verbalize).  Then Maya started wanting to lead the prayer.  Bobby usually watches her and smiles, and then we all make the Sign of the Cross, I tuck them in, sing their song, and night-night.  Today, when Maya was done, I turned to Bobby and said "Bobby, would you like to say the Hail Mary?"  He looked directly at me when I said his name, smiled when I was finished, and recited the entire prayer, smile on his face, ending with the Sign of the Cross and balancing himself so that he could hold his bear in one hand and make the gesture with his other.  My voice was all choked up when I thanked him and proceeded with the bedtime ritual, willing my tears not to fall, lest the kids think something was wrong.  Hail Mary, indeed.  Nice, warm ray of sunshine.

I found a big swingset on Craigslist and we've upgraded from our hard plastic, Little Tikes one to this mammerjammer, much to the delight of the kiddos.  Thanks to Peter and our neighbor, M, it was taken apart and put back together at our place last Sunday afternoon.  M, being so sweet, took a pie and beer as his payment, and is such a nice guy for so many reasons (not the least of which is that I adore his kids; his daughter even babysits for us).  The kids?  In heaven.  In fact, we're going to enjoy the 50 degree afternoon (after snow!!!) with some post-nap play!  (I couldnt get the pictures to post... not sure why, but I uploaded some pics of the new swingset on FB.)

I suppose I should get back to cleaning up the kitchen... The peanuts wake up around 3:30 and the last thing I want is a dirty kitchen and them telling me we have to play outside (which I promised!)


sprogblogger said...

Fantastic pictures, and it sure sounds like they're in the best of hands at school, which must be such a relief. May the diet continue to help--it sure sounds promising!--and that's something that you have control over, which must feel wonderful at this point!

Keeping you all in my thoughts. I don't know if I've mentioned this to you before, but my nephew was autistic (and so much like Bobby that reading your posts gives me chills sometimes.) He was helped so very much by early intervention--like what you're getting for Bobby--that I can't help but feel optimistic for Bobby's future. It's amazing how the right help can aid these little ones in finding their way in the world.

Terri Jones said...

Love this post. Early intervention is the key and you guys are doing everything possible. I think the diet part is very interesting. I have considered it with mine.

Paula said...

I'm confused as to why you won't be eligible for services if you choose not to use public school. Here, the parent has to provide transport and it has to be during school hours, but there are kids who either go to the local Catholic school or are homeschooled and come in a couple of times a week for services. It's really hard here though to get a PCA unless there are serious health concerns such as significant grand mal seizures on a frequent basis. Love the school pics! This is the first year I chose to just get Jess's class pic, but not an individual, and nothing for Jason(they don't do class pics in high school). I don't like the company our schools use so I'm going to hire a local photographer to do a shoot instead.

trennia said...

Love the pictures!
You are a great mother I am wondering if gluten free diet would make a difference with adhd,ocd,bipolar,odd,pmdd? I am going to research this.It made me smile that Bobby said the prayer :)

greeneyes said...

for a moment i thought it was you and peter's pics when you guys were young... they have so much resemblance of both of you...God bless's aunty bass praying that they will be blessed with every happiness and success in every step they make in this world and may their hereafter be the eternal cushion... may God had written the best of fate for them and not forgetting mummy and daddy too...