Sunday, April 29, 2012

Suburban Safari...

Yesterday was a day of work - I spent much of the day in our basement preparing for the biggest Yard Sale I'll ever have.  I did so much work that I had to call the producers of "Hoarders" to tell them we no longer qualify to be on their show.  It was extremely gratifying...and a TON of work.  I'm paying for it - big time - today.

But today was a day of fun!!  Ed and I took the boys to a local zoo.  The Elmwood Park Zoo has been right near my hometown my entire life.  Believe it or not, this was my very first visit!  We told the boys this morning and they were very excited.  (Although you will laugh your head off when you hear Brian's first two guesses of where he thought we might be going.)  Here's how it went...

This was the boy's first trip to a zoo - ever!  We let Brian be the tour guide...


...and the first thing he did was  climb a tree to go down a slide all by himself.

At the bottom he proclaimed, "I did it!  I did it!"

We saw monkeys...

We fed the swans which Brian loved...and Gavin REALLY loved!

 

Brian explored a Teepee...

...and an Adobe home.  He even stopped to pose for me and when I asked him to say, "Cheese" he said "No, Mommy...Cookie."  Hey, as long as I always get a picture as cute as this - you can say whatever you want!!!

We checked out a barn full of goats... 
 ...and Gavin bonded with a very vocal Barn Owl that wouldn't stop talking to him!

We stopped and had a nice picnic lunch!  It was then I really noticed that Gavin's allergies were out of control.  His eyes watering, his face rashy, his nose running.  Between the pollen and the animals he was suffering...with a smile, of course.

It was such a great day and we'll definitely go back!


This morning our very own Miss Sara ran her first half marathon.  I want to share with you what she put on her Facebook before the race.  I know it will touch you as it touched us.  It's just another reminder of how lucky we are that our children and our family are surrounded by so many wonderful, supportive people.

My inspiration for today's race -- Gavin. Every time I look down at my hand today, I'll remember all the times, especially in the past few days that he has used it to try to walk by himself or stand on his own, and just the thought of that will get me through another mile. There is no doubt in my mind that one day, with his determination, he will be running right alongside of me. — with Kate Gallagher Leong.




Friday, April 27, 2012

Ladybug Land!...


We have very exciting news.

We are now the proud parents of 15 ladybug larvae!!


The larvae arrived in the mail today and we were super excited (and maybe a little bit nervous to open that tube!)


It's possible that one escaped during the transfer into "Ladybug Land", but I'd prefer to not discuss that.  


Once they were all in with their food, it was fun to watch them crawl around and munch!!  Apparently (if we don't kill them) we will be able to watch them hatch from larvae into adult ladybugs in a week or two.  Pretty cool, eh?

Here is Gavin trying to crawl onto the counter to get to the faucet in the hopes that I'll turn it on for him.  Or, as I like to caption this photo - "Gavin looking lovingly at his new larvae friends - fascinated by the hatching process ahead of us."  Hey what do you want...sometimes you have to manipulate photos to make a better blog post.  I do it for you.  You're welcome.


Brian was quite the character today.  Non stop energy and, more importantly, non stop TALKING!  Sentences, memories, singing, pretending - it was an explosion and we were SO impressed.  His new favorite things to say are, "No, I don't want to do that!" and "Can I play for a little bit?"


He is so much fun, this child.


Gavin had Physical Therapy today with Miss Wendy and Brian was a willing and active assistant!  She brought a fun mat that made different sounds when you walk on the rubber feet.  Brian demonstrated for Gavin - and Gavin walked across it with Wendy to copy his little brother! 


She left us with a great tip.  To help Gavin with his walking and his balance, she said he needs to strengthen his hips.  To do this, we need to have him walk on his knees!  Who knew, right?


I think she might have also said one's hips would get smaller if you walk on your knees.  I can't remember.  So if you see me walking around town on my knees...it's strictly for research purposes.  

You know me...always going that extra mile for my readers.



Thursday, April 26, 2012

My Worst Nightmare...

I'm sure you have seen the video that has spread like wildfire by now.  A Dad in Cherry Hill, New Jersey posted a video on You Tube.  In the video, he played several tape recordings of how his nine year old autistic son's teacher and aide verbally abused and bullied him in school.  Equally upsetting...no other adults in the room (which was an autistic classroom of mostly non-verbal children) spoke up.  How did he obtain these recordings?  He wired his son with a recording device.  And then he sat and listened to the six hours of tape - horrified.

The teacher and the little boy's appointed Aide - they knew that he wouldn't be able to go home and "tell" on them.  They knew - or they thought, anyway - that they would get away with their inappropriate behavior in that classroom.  All of the kids were autistic and couldn't go home and tell their Moms and Dads what happened in school.

This is my absolute WORST nightmare.

We have been so lucky so far.  I am personally lucky that I have a husband who can support us so I can be home with the boys.  We went through some "interesting" Aides from agencies early, early on when Brian was a baby - but I was here to monitor them, so to speak.  I'm grateful for that.  I've heard horror stories from friends who have found Aides and nurses sleeping on the job...or stealing...or just plain not doing what they're supposed to be doing.  Agencies do not pay well - and the training, I'm sorry to say, is not great (no matter what they may tell you).  I truly believe that the low pay combined with the lack of training results in employees who just show up.  Add in some resentment about hating their job - and a child who demands a lot of attention and care - you will test the patience and push the limits of the employee.  That's just my opinion - and I am not talking across the board about all Aides as there clearly are exceptions.  We had one star from that period of our lives, Miss Kara, who is still a big part of our family.  But I'm grateful we found a different way to do things which works so well for us.  As you know, we have had some wonderful helpers - most recently Sara who is just amazing.

We have also been SO lucky with wonderful therapists over the past 4 1/2 years.  They, too, have become important people in our family.  How could we not feel that way when they are clearly so good with Gavin!!  And Brian!!!  Just today Gavin's teacher, Miss Janna, was here.  Gavin loves her so much - it's like he's flirting.  And I know that she - besides being passionate about her job - is crazy about him as well.  When Brian is not napping, she has a way of including him in Gavin's therapy sometimes.  (And sometimes he just muscles his way in, to be honest)  Today was no exception...


And Miss Maggie, too!  Gavin has had her for speech and feeding since he turned three.  And now she is Brian's speech therapist in school!  Having these two therapists work in the school where I send Brian means a lot to me.  Because I respect them...and their opinions...and know that they have our families best interests at heart - it was easier for me to send Brian there.  

Maggie was here today and she, too, included Brian in Gavin's therapy.  She put a picture of me and Brian on the iPad.  Then she showed Gavin a photo of his brother, which she held, and asked him to find the matching "person" on the iPad.  He got it right every time.


And when Brian heard his name as Gavin touched his photo on the screen - he came running excitedly to congratulate (and tickle) his big brother.


I'm sure that along the way I may have been labeled as a "control freak" parent by a therapist or a teacher or a coordinator.  It's very hard for me to give up control of Gavin.  Probably because I inherently don't trust people outside of our home alone with him.  There, I said it.  Yes, I did feel that way about Brian - but Brian is a bit tougher.  He can walk.  He is getting better and better at communicating every day.  Gavin is completely defenseless.  And that is what scares me.  So when I watched the following video made by the father of that Autistic boy - it gave me terrible anxiety and two sleepless nights.  Take a listen before I go on...


A week or so before I came across this video, I had made arrangements to visit a pre-school for Gavin.  I will be meeting Gavin's coordinator there on May 11th and Miss Janna, Miss Maggie and possibly Miss Stephanie (his OT) will be meeting us there, too.


The program is longer than Brian's.  It goes from 9am (after a bus ride from our home for probably 45 minutes) until after lunch.  I was crushed to learn that if I decide to send Gavin here that he would absolutely lose all of his current therapists.  They have therapists at the school that would see him during school hours.  I can understand that, in a way, as it fosters continuity and consistent communication among the team.


It was a lot to take in, though.  The thought of a new school...and ALL new therapists...it was a lot.  And I wondered if it would be too many changes for Gavin.  But I've always had in my mind that Miss Sara would go to school with him...as his Aide.  I didn't have the guts to ask the coordinator on the phone if they would allow this.  She had already bummed me out with telling me he'd lose his current team - entirely.

I'll be praying hard until the meeting that this won't be an issue...


I can't imagine why it would be.  They wouldn't have to pay for Sara.  They would have an insider right there that could translate Gavin's actions for them.  She could ensure that he was safe at all times. They would have an extra set of hands.  What could possibly be the problem, right?

 

 After Sara watched that You Tube video, she said to me:  "And THAT is why Gavin will always go to school with a buddy."  That's exactly how I feel.  It makes total sense for a child like Gavin who can't walk, talk or feed himself...is not potty trained...and can't tell us when something is bothering him...to have someone who knows him well (and loves him) at his side.  And as a parent, why wouldn't we want to send Gavin into the world with a friend - of his AND of ours - instead of a hired stranger who is possibly underpaid, undervalued and....need I go on?  If I am told that Sara can't go with Gavin to this particular school...and it's non-negotiable?  I'll find another school.  That's all there is to it.

I know that one bad apple doesn't and shouldn't ruin it for the whole barrel.  But after hearing and reading MULTITUDES of horrible, depressing stories about the abuse of special needs children in schools (just google it - you'll see!) ...I feel more protective than ever.  Want to know what I would LOVE to propose?  That every school has cameras.  I've heard about day cares (for children and for pets!) that let you log in remotely from your computer to watch a live cam.  How awesome would that be???  And just knowing that anyone could be watching at any time - that would keep ANY teacher or aide on their toes.  Much like a nanny cam...but you wouldn't hide that it's there.  All upfront - no secrets.


I'd love to hear your thoughts on this.  Especially if you are a special needs parent who has had experience with this situation...a teacher...a witness to this type of bad behavior...an aide...I want to hear from all of you.  


Who knew that being a Mommy could be this agonizing.  (Besides you, Mom.)


Wednesday, April 25, 2012

Dethroning Our Pineapple Prince...


This past Monday I mentioned in my post that Gavin had been breaking out in a rash.  We were kinda confused by it.  I thought about some of the new foods I had introduced.  There was the black eyed peas with onions and tomatoes....the mushrooms and onions in his veggie stew...the orange Champion greek yogurt...they were the only "new things."

Tonight, I took Gavin to see my Acupuncturist, Dr. Kang.  I told her about the new foods - and the other things he has been eating.  In the end, he showed a reaction to PINEAPPLE!  Our last batch of chickens that we pureed had fresh pineapple in there.  He has had it before - Pineapple Chicken - but neither of us remember him having a reaction.  But he sure reacted tonight!  So we promptly threw out our freezer stash of Pineapple Chicken and ran out to get more chicken to puree.  Gavin LOVES chicken.

I feel so grateful to be able to turn to alternative medicine like I do.  I might have waited weeks or a month or more to get him tested at an allergist - and it would have been the needle pricks.  This was SO much easier.

Speaking of Gavin and his eating...

Today he had Occupational Therapy with Miss Stephanie.  And yesterday he had feeding therapy with Miss Maggie.  Both therapists work with him on his feeding issues.  Maggie is more interested in what he does in his mouth - chewing, moving food around, closing his mouth, etc.  Stephanie is more interested in the practicality of eating - getting him to feed himself.  As for Gavin, he's more interested in whatever he's interested in.  As usual, his performance in therapy depends on his mood at that moment.

When he started with Stephanie today, his mood looked like this:


Translation:  Not interested in the Cinnamon Applesauce on that spoon.

She tried several times while I was singing and dancing in the background to keep him from swatting the spoon out of her hand.

But then we switched the food to Yams - one of Gavin's all time favorite foods. My idle threats, claiming that if I didn't get "Money Shots" for this blog that he'd be out of the will - they fell on deaf ears.  Put some Yams on a spoon?  Suddenly he's a regular performance artist.

 

Gavin knows what he likes.  I guess you gotta hand it to him for sticking up for himself.


Tuesday, April 24, 2012

Stand Up!...


Are you sitting down?  I can wait...

This morning, Gavin stood independently for TEN SECONDS.  Sara and I were back and forth staring at him and staring wide eyed at each other...but neither of us had the video camera.  Figures.  So, for the rest of the day, we worked to recreate the moment.

He almost had it here...

video

And he was so close here!

video


After Sara left, Brian and I encouraged Gavin and I set up the camera with a remote.  I may not have captured Gavin standing - but what I ended up filming was equally important.  

I love these little boys...


Monday, April 23, 2012

Working My Way Back To Life...


I didn't blog this weekend...in case you didn't notice.  I was busy doing something simple - trying to get my life back in order.  No big deal.

I feel like I have blamed a lot of things on my Dad's death this past November.  It is possible, though, that my "I'll get to it later" "I just don't care" and "Who really looks at the clutter and the chaos in my house anyway?" type of attitude could have been a slow-building event.  It has been a rough couple years, eh?  The bigger the pile on my dining room table (which we obviously don't use), the less I cared.  The bigger my 'to do' pile, the worse my anxiety became.  The more promises I made to myself that I would stick with a project...the more I failed at doing so.  I'm not sure why - but that's the truth of it all!

So...this weekend, I decided to start somewhere.  To put one foot in front of the other and try to get back to some sort of something.  I'm still not exactly sure what.  I'm also not exactly sure I'm making sense, but I'm going to keep typing and then press 'publish' anyway.

I cleaned out my closet.  Took a deep breath and got rid of clothes I had no business keeping.  I will never be a size 4...and maybe never a 6...again.  Shoes from 1997?  In the garage sale pile.  Purses from 1999?  Tossed in the same pile.  Once I knew what I had - and what I needed (a lot), Brian and I went shopping.  It should be noted that I really don't enjoy clothes shopping.  Hate it, actually.  I half wished that bringing Brian would end the trip early.  But the opposite happened.  Brian and I were out from 1pm until dinnertime.  He was in and out of the dressing rooms four times with me.  When other children were whining and throwing tantrums, he looked at me and whispered, "Mama - too loud!"  He was such a sweet partner and so, incredibly patient, that we made a special stop to buy him a new stuffed "Angry Bird" for his collection.  I came home with a huge bag of clothes, including a few items from the "Jennifer Lopez" collection.  I feel like I have arrived.


Gavin stayed home with Ed.  He had a rough weekend with allergies and I really didn't want to bring him outside.  His eyes were puffy and watery...he was dazed...and somewhat stuffy.  To make matters worse, he developed a rash on his face.  It was at it's worst on Friday afternoon into Saturday.  By Sunday it had gone down and I thought we were in the clear.  Unfortunately, I was wrong.  It was back again today.

You can see the bumps in the photo on the left.  And you can really see the rash in the photo on the right.  It doesn't seem to bother him - but Gavin isn't really one to complain much.


             

My guess is that it's a food allergy.  I pureed some of a baked ziti I made, so my first thought was tomatoes.  But I also made my veggie stew different this go around - I added sauteed onions and mushrooms.  We didn't make any other changes - detergent, sheets, etc.  I'm hoping to get him an appointment with Dr. Kang, our acupuncturist, to see if she can test him for these new foods.

He's also been doing something rather worrisome.  Gavin has been purposely falling. He will be kneeling (low or high) and will just let himself fall backwards (never from standing) with no care of what's behind him.  He's banged his head into toys...the book display...the carpeted floor...the hardwood floor...you name it.  Tonight I noticed a goose egg on the top of his cute little head.  He's gone through this phase before.  I don't think it's a medical thing - something he can't control.  I do think it's a sensory "let me see what I can do with my body" type of thing and I'm hoping it's a quickly passing phase.  It is one of those behaviors that really bums me out.

On the bright side - Gavin is very interested in what his body can do!  That part I love!  He continues to want to try to stand independently.  I'll get him in the standing position and soon I feel him slowly and deliberately letting go of my hands.  It's pretty awesome.  I think it's only a matter of time before this child is not only standing - but walking on his own.

Miss Janna, Gavin's teacher, was here today.  She introduced us to a new app called "Fluidity" which Gavin LOVED.  She used it as a reward after each activity.


Janna has arranged for me and some of Gavin's other therapists to re-visit a preschool that I toured almost two years ago.  I had a pretty strong reaction to the school back then - hating so many things about it.  I pretty rarely change my mind when I feel that strongly so I surprised everyone, including myself, when I recently decided to give this school another look.  I was in a different place then and so was Gavin.  Seeing this school with a fresh perspective and a new set of eyes can't hurt.  When I found out that Gavin's previous Occupational Therapist, Miss Marianne, who was with him from infancy until he turned three took a job at this school - it was a big plus.  I respect Marianne a lot and I'm sure she wouldn't work in a school that she didn't feel good about.  So in a few weeks we're going to take a look.  It's possible that I may be sending Gavin to preschool - I don't know when or how often.  But it's possible.

Maybe letting go a little more will help me with this "get my life back in order project."  We'll see.

Brian's speech is exploding.  Ever since Easter when he spent the day with his cousins.  I'm not sure if there's a connection, because he spends every day with his school friends - all of which are great talkers!  Maybe it was a coincidence that something "clicked" on Easter.  Either way - it's so wonderful to see him trying so hard.  

Here's his latest - something we had fun with all weekend - counting backwards to blast off...

video


And in this video you can hear how he says his own name, which is so adorable...

video
I'm so grateful to Brian's teachers and his wonderful speech therapist, Miss Maggie.  I was so nervous about sending him to school.  Seems so silly now, looking back.  He's doing SO well...which is another reason why I'm leaning towards sending Gavin.  The thought that I might be holding him back is something that weighs heavily on my heart.

Deep breaths.  We'll get there...


Friday, April 20, 2012

Mr. Independent...


Brian has become "Mr. Independent" lately - everything is "Me!" or "Me do it!" and I love it.  Picking him up from school is such a joy.  I'm so grateful that I can pick him up and spend that time to and from school with just him.  It's only a ten minute drive, but it's so special. 

(excuse the quality of my *cell phone photos*!)

Every day when I pick him up he comes running - and I mean LOVE STORY RUNNING like he's bounding through a meadow - and leaps into my arms for a great giant hug and kiss.  (Getting the picture why I love picking him up?)  He climbs into the car on his own now...



It should be mentioned that he probably could have done this quite some time ago, but we all know I have a hard time letting go so they can grow.
Moving on....


The first thing he does is grab his nice cold milk out of the cup holder.  What can I say - he deserves to be spoiled, this child.


And then turns around and sits down in his seat so I can buckle him in.


I then present my little prince with his iPad so he can play games or read a book on the way home.  He really does neither...


We spend the drive "chatting" and pointing out school buses and birds and flags and trucks and fences and bridges and ducks in the water.  Brian's speech is improving so much, it's incredible.  Literally the day after Easter (which, ironically, he spent with LOTS of young cousins who were talking up a storm) he exploded with language.  He's now talking in short sentences and trying very hard to say words correctly.  I'm so proud of him.


And!!  Just the other day, when I took him for his haircut, he sat in the seat all by himself for the entire cut!  He's been sitting on my lap all his life for his monthly cuts!  (Again...he probably could have done this last year. Ha!)  


He was such a good boy...and awfully proud of himself as you can see!


Brian is such a special kid.  I think he is so smart...and so kind...and so funny.  I think big things are in store for my independent little man.  And I promise to not keep him from using his wings.


This morning after getting a little "dolled up" (yes, this is me looking "dolled up", I'm afraid), I headed over to my parent's house.  My Mom was taking me out to lunch at a very sentimental restaurant to celebrate my birthday and my Dad's birthday.  The William Penn Inn was my favorite restaurant growing up.  The trees outside were always lit up with white lights - year round - which I loved.  If there was a super-special occasion (like when I got the flight attendant job) my parents would take me there.  I really wanted my wedding to be there but I found out it just wasn't big enough for our huge family!  My parents would also go there often for special date nights.  And we hosted my father's funeral luncheon there just this past November.  

I know my Dad was with my Mom and I today.  I just know it.  I snapped this photo outside of the two of us...


I loved spending the day with my Mom.  We had a great lunch, great conversation...and then did a bunch of nothing.  It was BLISSFUL.  

And coming home to two happy boys who had such a fun day with Miss Sara made it even better.


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