High Flyer May 25, 2012

 

How To Have Fun On A Day Off From School While Giving Your Daddy Anxiety 101.

(Please ignore the  mess in the room.  It doesn’t usually look like that.  At least, not for very long.)

 

Jay set this little activity up himself.  I walked in and caught him doing tricks off the top bunk onto bean bags one day.  It’s his newest favourite pass time and it drives CC bonkers.  He’s sure one of the kids are gonna get hurt doing this one day.  Of course, I don’t want him to get hurt, but he’s a boy and these are the things that boys do.  Right?  I’m also glad that he has the creativity and the strength and the coordination to pull this off.  I know many of our little auties have problems with muscle tone and clumsiness.

 

 

It’s a holiday weekend here in the US of A.  I hope you all get to do something that’s fun for you and your family.  Something that’s fun but injury free.  I also hope all of your kiddos spend the weekend being happy and melt-down free.  We’re gonna try.

 

xoxo till next week.

 

 

Diagnosis Day May 22, 2012

It’s a rainy day here in New Jersey.  I’m on edge.  I’ve been on edge for 5 days.  I’m trying to act like I’m not.  I make breakfast and I get dressed.  I smile and I fight to keep my voice even.  I don’t want CC or Ace to know that it feels like they’re hosting the Olympics in my stomach.

 

We walk down the stairs and I look at him.  Ace.  He looks so small.

Why does he look smaller today than on any other day?

 

I wonder to myself “why do my babies have to go through so much?”  He should be at school right now.  Learning fun things like how caterpillars turn into butterflies.  Instead, he’s on his way to see a Pediatric Neurologist.  He wasn’t supposed to go until July but due to a last minute cancellation and a conveniently timed phone call on my part, he got bumped up.

 

We’re sitting in the waiting room.  Ace, CC and myself.

I keep looking at Ace.  He has freshly cut toe nails.  He’s wearing a batman shirt and he’s playing with his transformers toy.  He’s happy … until he gets antsy.  We’ve been waiting for a while.  There’s paperwork business to take care of.

He wants a snack.  He wants juice.  He wants to know why they are taking so long.  He wants to go home.  He wants to know where the doctor is.  He tells me that he loves me.  He says he’s cold. (It’s not cold).  He wants more snacks and more juice. He asks to play with an old, washed out puzzle toy in the waiting room.  He fingers my earrings.  CC takes him to the bathroom.  He says he needs to tell me something and when I ask what it is he draws a blank.

I remember him telling me the night before that he feels sad when he is asked to be quiet and that talking makes him happy.

 

Two other families are in the waiting room with their sons.  It makes me sad.  I can’t stop wondering what brings those other boys here.  I know whatever it is, I would wish away if I could.  No-one wants to have to bring their child to see a Developmental Pediatrician or a Neurologist.

 

Then I hear a mom on the phone.  She’s arguing with someone.  She says … “I need to make sure this never happens again.  I need to understand why security was called instead of the child study team.”

Something catches in my throat.

OMG!

Her poor child.  What is that child dealing with?  It’s just not fair.

I count our blessings because we don’t have violent outbursts in our home.  My children don’t attack us or try to hurt themselves.

 

Then they tell us that it’s our turn to go see the doctor.

 

 

 

Long story short ……… Ace has been diagnosed with ADHD.  He hasn’t been prescribed any medication, so it’s business as usual at home and a 504 plan will be put in place for him at school.

Lord, please let it help!

 

That’s all I know for now.  We will take it one day at a time and see where this road leads us.

 

I force myself to exhale.

 

Weekend Journal 5/20 May 20, 2012

Dear Blog,

This was a good weekend.  The weather was great.  My sister came over to visit and we had a picnic in the park.  Ace saw some school friends of his there which made the day that much better for him.  We ate really delicious cupcakes and we read stories.  We went to a flea market where I was able to get diapers for $5 a pack and some school pants for Ace for next year for $2.  Ace bought a transformers toy and Jay bought an animal farm train.  We (which really means CC) cleaned the kids room and I made it to the gym for the first time in almost a month.

 

Also, my dear blog … On Sunday, Jay ate scrambled eggs for breakfast, ate the noodles from chicken soup for lunch and ate ravioli for dinner.  I seriously cannot remember the last time he ate 3 square meals.

I am so excited.  I’m gonna try him with shepherd’s pie tomorrow.  I don’t know … maybe I’m expecting too much … but I’m gonna try.

 

And the grand finale to the weekend … is this.

 

 

See you soon again blog.  I’m gonna go bask in what’s left of my weekend.

Love you, Deenie

One Little Monkey May 17, 2012

How many different ways can a kid climb on his very patient Daddy while his very patient  Daddy tries to watch some Saturday morning TV?

You don’t know???

 

I’ll show you.

 

 

After this, we all packed up and went to the park … where they have things that are meant to be climbed on.

Daddy didn’t get his precious TV time that day until the monkey pictured above was in bed.

All part of the fun of being an amazing Daddy. 

 

p.s.  It was 80 degrees that day.  Take some extra credit for yourself if you noticed that Jay is wearing shorts and a short sleeved t-shirt.

The Seasons May 15, 2012

I grew up in Jamaica.  Not Jamaica, NY.  Jamaica the Caribbean Island.  We have 1 season there.  Summer.  Sure, sometimes it’s rainy and sometimes it’s dry but it’s always warm.  I think until I was 16, I only owned 1 pair of long pants/jeans and maybe 1 sweater which I wore once when the early morning temps dropped to a chilly 65.  We thought it was freezing.

I’ve been living in the Northeast USA for many years now and I have always had a very bad relationship with the changing of the seasons.

I didn’t like the fall because it meant winter was right around the corner.  I hated winter because – well – it’s freakin cold and gloomy.    I didn’t like the spring because it always seemed to drag on for way too long and delay the coming of summer.

I’ve thought about packing up and moving back to the Caribbean or to Florida more times than I can count.

It hasn’t happened … yet!

What I’ve noticed over the last couple of years though is that … I’m … ahm … starting to … kind of … sorta … like the different seasons.

How did this happen you ask?

Well, let me tell you.

I became a Mom.

I like doing things with my kids.  I like keeping them active.  I want them to have a wide variety of memories when they look back on their childhood.

So even if it’s the fall or the winter or the spring I don’t have it in me to keep them inside.  We bundle up (a lot) and head out to enjoy our environment.

 

In the fall we pick our own apples and we carve pumpkins and we go on hay rides and we rake leaves and then jump into the pile.

In the winter we have snowball fights and we go to ski lodges and we catch snow flakes on our tongues and we cuddle up under blankets and drink hot chocolate.

In the spring we go to the park and to festivals and we have bon-fires and we climb trees.

Oh and in the summer – the glorious summer – we go to the beach and amusement parks and we have bar-be-cues and we go camping and we have ice-cream and picnics.

 

My sons love it all.  They are out-doorsy kids.

Becoming a mom has given me so much.  I’ll never be able to journal all of them.  But this is one of the most unexpected gifts.  My boys have given me a way to appreciate the seasons in a way that I don’t think anything else ever could have.

There’s something else too.  The seasons give me an easy way to see how much my kids have changed and grown and learned since the last time we were in that season.  It’s unbelievable and amazing.  Even if we do the same activities, we all experience it in a totally different way.   I can best compare it to seeing someone you haven’t seen in a long time and they’ve lost a lot of weight.  It’s much more obvious to you than to someone who sees that same person everyday.

 

Thanks to my sons for opening my eyes and showing me a whole new world.

Now that we’re on the verge of summer, I have already seen so many ways in which my boys are different from last summer and I can’t wait to experience it with them all over again but in a brand new way.

I’ll be OK once the fall gets here but I still hope the summer time passes slowly.

Play Share Enjoy May 14, 2012

• Doesn’t make eye contact (e.g. look at you when being fed).
• Doesn’t smile when smiled at.
• Doesn’t respond to his or her name or to the sound of a familiar voice.
• Doesn’t point or wave goodbye or use other gestures to communicate.
• Doesn’t follow the gesture when you point things out.
• Doesn’t make noises to get your attention.
• Doesn’t initiate or respond to cuddling.
• Doesn’t imitate your movements and facial expressions.
• Doesn’t play with other people or share interest and enjoyment.
• Doesn’t ask for help or make other basic requests.
• Lack of empathy. Difficulty understanding another person’s feelings, such as pain or sorrow.
• Stereotyped behaviors. These may include body rocking and hand flapping.
• A need for sameness and routines.
• Preoccupation with certain topics. For example, older children and adults may be fascinated by video games, trading cards, or license plates.

 

I’ve read and heard all of the above many times used to describe autism signs/symptoms.  I’ve spent a couple of years worrying about all of them – and all the other signs/symptoms that aren’t on that list and thinking that Jay would always be that way.

Almost 2 years after his diagnosis, Jay no longer matches with any of the above.  Sure, he’s still autistic but he doesn’t fit neatly into any of those dots.

Some he never did and the rest have improved significantly or simply are no longer an issue.  That is what I need to remember on days when I feel like we’re losing the battle.

 

Today I want to focus on the “Doesn’t play with other people or share interest and enjoyment.”

 

Lets see?  On Saturday we went to the park with a neighbour and his 4 year old son.  It was the best weather day we’ve had all year.  Or maybe the 2nd best.  Either way, it was a beautiful day and the kids and I were itching to be outside.

 

When we got to the park, all the kids ran straight for the climbing thingy with the slide and wobbly bridge etc.  They all played TOGETHER.  There was no prompting on my part.  No urging by Ace.  It happened organically.  The younger ones tried to follow the older ones up the funky ladders (without success).  They all looked at the sliding pole and decided against it.  Ace helped pull Jay over the threshold as he got to the top after walking UP the slide.  They played tag.  When 1 stopped for a juice break, they all stopped for a juice break.  When 1 fell and hurt his leg, they all stopped playing until he was feeling better.

 

Then my neighbour tried to engage them in a game of football (soccer).  Jay checked it out (for 0.7 seconds) and decided it wasn’t for him so he instead went back to the play apparatus.  Ace and the neighbours son ran around kicking the ball (dribbling) and scoring goals and falling over and trying to tackle the ball away from each other for quite some time.  They were having a great time.  They all kept calling to Jay for him to come join them but he simply wasn’t interested.

He pulled me to the swings and we swung.

He didn’t seem at all perturbed that the other boys were playing without him.  It wasn’t his thing so he found something else to entertain himself.

I realized, that’s always what he does.  He joins in when he wants to, and when he doesn’t he just finds something else to do.  Is that so bad?  I mean, don’t we all tell our kids not to give in to peer pressure?  I don’t think I’ll need to teach Jay that lesson.

 

When they were done with football (still soccer), they began a water gun fight with 2 other boys who were there and Jay was all over that one.  He shot people and got shot and laughed and came back to the adults for a re-fill and so it went until it was time to go home.

…..

 

When we’re home, Ace ALWAYS wants to play with Jay.  Sure, sometimes, Jay just wants to be left alone with his i-pad but there are many times when they jump on the bed together, they chase each other and they watch TV, they play with bean bag chairs and they invent new ways to play on the bunk bed ladder (much to CC’s fretting) and they build contraptions and they really enjoy each others company.

 

On another day I’ll give specific examples of how my Jay “gets our attention” or “initiates cuddling” or “shows flexibility with his routine”.   Maybe I can turn this into some sort of series.  For today, though, I’m gonna stop worrying about all the above dots from some website and tuck this little nugget of info away …

while he may only  play with other people or share interest and enjoyment on his own terms … he does play and he does share his interests and he does have enjoyment. 

My Surprise Mothers Day Present NOW May 11, 2012

I know I already posted today and I really don’t mean to “bother” those of you who get e-mails every time I post by over doing it with the blogging but this put a huge smile on my face and so I just had to share it.

 

 

This morning as I’m getting ready for work …

 

Ace: Mummy, I have a surprise for you.  It’s a Mothers Day present.  I can’t show you until it’s Mothers Day OK?  You tell me when it’s Mothers Day and I’ll give it to you. OK?

 

Me:  OK baby

 

Ace:  It’s a card!!!

 

Me:  Ooh, OK.  Nice.

 

Ace:  And it’s shaped like a heart.  I made it.  And I drawed on it and decorated it.  It’s beautiful and it’s for you. 

 

Me:  You mean you drew on it.

 

Ace:  Yes, I drew on it.  But it’s a surprise remember?  So you can’t see it.  When is Mothers Day again? 

 

Me:  On Sunday.  I’m sure it will be a wonderful surprise.

 

Ace:  Can we go to the park tomorrow and I can play with my water gun and wear my clothes that Nanas gave me and bring my ball and my sun glasses and my bike?  That’s all I need at the park.

 

Me:  Yes we can go to the park.  But please try and behave in school today.

(Me: *grinning from ear to ear* I can’t wait to see my surprise card that my son drawed on)

 

 

In completely unrelated news … Jay has been saying “help me” for a while now.  It’s been very helpful to us in trying to parent him.  We spent many hours teaching him to say those 2 words.

Well … Mr Man has added to it.  We have no idea where he got it from.  CC and I certainly didn’t teach him this.  We doubt his teachers did either.  But it’s quickly become his favourite thing to say.  We heard it last night a few times and again this morning in the car.

“help me NOW“

… ahm … We let you get away with a lot little dude, but yelling at us to help you NOW, isn’t gonna work out so well for you.  lol  Good try though. 

 

 

This is shaping up to be a very happy Mothers Day weekend for me.  I hope it is for all you amazing Moms out there too.  xoxo

Wind Beneath My Wings May 11, 2012

 

Hey Ya’ll *waving*

 

I didn’t think I’d be so “into” the Friday Song Choice thing but it’s kind of fun.  Thanks Sabrina

I especially like it when I don’t have anything else that I’m ready to write about because I hate to leave my poor blog unattended for too long.

 

This week on American Idol (don’t act like you don’t watch), the theme was “Songs You Wish You Had Written“.

This is mine.

 

p.s.  It’s also (Grand) Mothers Day weekend.  My Grandma most definitely was my wind.

p.p.s.  Beaches is one of my all time favourite movies.  No matter how many times I see it (about 673 times), I cry.

 

 

Appointment Anxiety May 9, 2012

I have been dragging my feet working on getting Ace an appointment to see a Developmental Pediatrician for a few months now.  My 1st choice was for him to see Jay’s doctor, (since we had a few bad experiences with Jay before we finally found his current doctor who we are happy with).  It seems all the good places have waiting lists though so I ended up putting Ace on 3 different ones.  More because I was really feeling the pressure from his school to have him evaluated and less because I was in a rush to get him evaluated.  I wasn’t as aggressive as I had been to get Jay his initial appointment.  I kept giving Ace time to out-grow his ADHD-like symptoms.  I figured I’d be ready to take the doctor plunge by the time the summer came.  I knew I didn’t want to make first grade more difficult for him than it needed to be.

 

He’s always been a very active (some may say hyper) kid.  I used to think it was typical little boy behaviour but then once he started real school, it quickly became obvious that not all the other little boys were like him.  He was … extra!  I then figured, it was a maturity issue.  He is after all the youngest child in the class so maybe he just needed a few weeks to settle in and learn the right classroom behaviour from the older kids.  That hasn’t happened.  I thought, his teachers were fed up and were being unrealistic with their expectations of him.  After doing some digging, it doesn’t seem like that’s the case.  In fact, they have and continue to routinely go above and beyond for my boy.

CC and I have been to multiple meetings with his school – the 1st one was way back in September – about what they (we) can do to help him.  So far, nothing has worked.

 

It’s now May.  The end of the school year is 6 weeks away and there has been NO improvement in his ability to function properly in the classroom.  Not without accommodations anyway.

Accommodations that the school cannot (will not?) continue to allow without an official diagnosis.

He still zones out and interrupts conversations and rolls around on the floor and cannot sit still and is distracting and disruptive and has poor eye contact and is not aware of his body and cannot control his impulses and resists change and is stubborn and scripts (uses echolalia).

 

Even though I know there’s something there; To get the phone call – from Jay’s doctors office – that officially confirmed Ace’s appointment was hard on my heart.  I didn’t expect to feel like this but as the clock ticks down to his appointment day I imagine I will only feel more and more anxious about what the good Doc will say.

If she says he doesn’t fit the criteria for a diagnosis then we could be in for a hell of a difficult time in 1st grade – and likely beyond.  If she does assign him a diagnosis – a lot of things will change.  Right?  We’ll be a double diagnosis family.  What will that mean?  For our future?  For Ace’s future?

I don’t know.

 

One thing I’m sure of … in all the ways that matter – nothing will change.  Ace will still be my loving, kind, sensitive, entertaining, funny, charming, handsome, smart, brave, energetic, sweet love.

Boof May 8, 2012

Dear Lord … Open my eyes and ears and heart to what my son is showing me and telling me.

 

I talk a lot about wanting the best for Jay.  I talk about wanting people to appreciate him for the wonderful person that he is.  I talk about not putting limits on him and his potential.  I talk about only having people in his life who I think will bring positive energy to him.  I talk and I write and I talk some more.

I really mean those things that I say.  I believe there’s a lot I can learn from Jay. I believe there’s a lot the whole world can learn from looking outside their little bubbles and opening themselves up to new people and experiences.

 

I also realize that even with the best of intentions, it’s not always so easy.  What’s easy is to stick to what we know.  It’s easy to assume. It’s hard work to push against the norm.  It’s very difficult to ignore what’s most obvious and to dig deep to find the treasure. That’s why I keep talking and I keep writing and I keep sharing.  Because even though we may know … some lessons need refreshing.

Today I got a subtle kick in the pants that sometimes, even I’m guilty of closing my mind to the possibilities of my son.  Sometimes, I unintentionally put limits on his abilities.  Sometimes, I go through the motions without really focusing on him.

 

It was so simple really.

Jay was going through some word puzzles that he has and was saying the names of the pictures on each piece.  After he says the name on the picture, he expects me to say it too.  It’s what we do.  I used to have to look at the pictures before I repeated the words because I couldn’t understand what he was saying.  Now, there’s no need for me to look.  I can absent mindedly fold laundry, or do my hair as we go through his routine.  I can even be talking to CC and stop mid-sentence, repeat Jay’s word and then continue talking to CC.  I’m a pro.  I know when he says “ay his“, he has the elephant piece so I say (with much emphasis) “e-le-phant“.  When he says “pih“, I know he has the pig piece so I say (with much emphasis on the G, “pig“.  When he says “wabi“, I know that’s lion and when he says “ih her“, I say “ti-ger“.  So on and so forth.

 

Most recently, as we were going through his puzzle pieces, he said “bird“.  I couldn’t for the life of me, figure out what he was saying.  I stalled.  He said it again since I wasn’t doing my part and repeating the word.  I was lost.  I didn’t know what to say.  I stopped what I was doing to go and look at the picture he was holding.

Sure enough it was a picture of a bird.

Does it sound silly that I had to go and look?

It seemed über silly to me when it happened and even now as I’m typing this.

But the thing is … for as long as I can remember, Jay’s word for bird was “ boof “.  The fact that he had not said boof and had actually said bird didn’t register with me and I thought for sure there was some other word that he was trying to say but it accidentally came out sounding like bird.

 

Anyone else in the world would have gotten it.  But it wasn’t what I was used to.  It wasn’t part of our routine and it totally threw me off.

It was just the reminder I needed that instead of always expecting him to do what he’s always done  … I need to always be ready to see that he is changing and blossoming.

 

 

p.s.  After the boof/bird mix-up, he also said “sun” – as clear as day – which was another 1st, but I was prepared for that one.