Eleven Years - Reflections

Eleven years ago, I was twenty years old, and due to wake up an hour later to go to work, but my uncle threw open my door and yelled "the World Trade Centre's been hit!"
I'm ashamed to say that I thought he was pulling my leg.
When I woke up an hour later, I went out to the living room where my uncle was glued to the TV.  I asked him what he was watching, then saw it...the footage from a plane crashing into the towers. At work, the mood was subdued, full of anger and heartbreak for our American neighbours. As time went on, more and more about this horrific tragedy was discovered.

Now, it's eleven years later.  Children who lost their parents that day have grown, young men and women who's lives were charged forever.  Parents who buried their children that day have survived, the best they can, and mourned their children as time has passed.  The man behind these attacks is dead.

I hope, and pray, that we have learned something, taken some great lesson from this horrible day, and that history will not repeat itself.  The lives on the many lost can be honored by our actions.  We have grown, survived, and someday we will create a better world from the lessons of the past.

9/11. We will never forget.

Update!

Hello friends!
It's been awhile, and I'm sorry for that.  As you know, J had his autism assessment.  NOT easy, let me tell you.  The doctor, who was amazing, had to push him, make him uncomfortable and on edge.  She would cut him short, switch tasks without notice, and offer things he wasn't keen on.  She had him good and mad, so that she could see his true reactions.  He reacted exactly as he normally would, which was LOUD and angry.  At the end of it all, she decided that he does not have autism.  She suspects either ADHD or a behaviour disorder, but was loathe to diagnose at this point.  She says that she'd like him to be in school for at least a year first.  After that, we'll have a meeting and re-assess.  For now, we are working in co-operative problem-solving; working with him to find solutions rather that him getting angry because something isn't working for him.  So far, it's been moderately successful. 

J did really well on the trip, which was two ferry rides and a lot of driving.  Daddy and I did worse, as we missed K so much.  She stayed home with a very good friend of mine.  After the appointment, we went to Ikea for lunch, and bought a gift for each of the kids.  K has been carting her doll around ever since.

J has turned five!  FIVE!  It's amazing, how fast the last five years have gone.  Seems like yesterday that I was laying on the table, blue sheet draped in front of me, Daddy crouched besdie me, staring at my beautiful baby boy for the first time.  If this is how fast the first five years have gone, I'm a little afraid for the future.  It seems that we hardly blink, and our babies become kids, then kids become teenagers, and adults.  I think that I understand a little better how our parents must have felt.

Well, that's all for now, folks.  We're laying a bit low around here, playing outside and helping J learn to ride his bike, and teaching K how to talk.  They really do grow up too fast.

Enjoy your day,

~Dee~

The Real Heroes

Have you heard about The Anaya Initiative?  Anaya is a sweet baby who passed away from Krabbe Leukodystrophy, a disease which, if found at birth, is completely curable.  Anaya's mama, Camara, is working with Fundrazr, an amazing online fundraising group, to help other families stricken with this disease, and to bring awareness about Krabbe.  No baby should have to die from this disease.  Please take a moment to look at the website and Facebook page, and see what she's trying to do.  I hope someday that no child will have to die from this disease.

Have a wonderful day,
~Dee~

A Few Thoughts

Hi everyone!

Hope you're doing well. The weather's been gorgeous and sunny here.  J had OT today, and after that we went to the water park and met up with some friends.  We're very lucky that our water park is free, otherwise we could not afford to go!  The kids had a blast. K was afraid of the spraying water, but J loved it. He doesn't like pools, but he sure loves spraying water. My best friend was there with two of her kids, and they all played together.  Her daughter, K, who has the same name as my K, absolutely loves her, and chased her around the park the whole time.  J played with her son, K, and even walked with him on the way home.

There's not really anything new to report.  We had his school level meeting and preschool graduation on Monday. The meeting has given me a lot of hope. The school is very ready for J.  They've set up an aide, and had already been familiarizing him with the school, without my knowledge.  The referrals for ST and OT go out soon.  I have such a good feeling about things. There is so much support for J, it just takes my breath away.  He's excited as well,  he really misses preschool.  We ran into B at the water park today, and he was really excited.  We'll be going to the school park over the summer, so we may be able to drop by the daycare and see M and B again.

The assessment is soon, and I find that I'm not nearly as worried as I was. No matter the outcome, he's still the same amazing boy that he's always been. He may be emotional and easily agitated, but at the same time, he plays with his sister and makes her giggle, loves books and music, and has an insatiable curiosity about the world around him. No diagnosis can change that. He's J. He'll always be J. If we remember that, all will be well. All that will change is that he will be able to get the help that we weren't able to give him.

That's all I've got for now. Take care!

~Dee~

Our wait is OVER!

Hello readers!

We have a date!  After three years of waiting, J will receive his assessment for autism next Tuesday.  We're excited, scared, but grateful to finally get answers. It'll be the first time we go anywhere, for any length of time, without K :(. I'll keep you updated.

To be honest, I'm scared. Scared that my own lack of understanding about ASD will change how I view my child. Scared that I won't be strong when he needs me to be. I guess that I'm mostly scared that ill fail my baby. I love him, he's perfect in every way, but I'm still scared.

On another note, we heard from J's potential school.  He got in!  He's registered for the 2012-2013 school year!  I'm so happy. The school is amazing, and he likes it there. We have a meeting to flesh out some details, tomorrow morning. He'll be getting a TA, and an Individual Education Plan set in place.  The school system has evolved so much from when I was in school, especially when it comes to special-needs students. We're really excited to see what September brings.

I'm sorry for such a short post. With the nice weather, we've been outside a lot, and by the evening we're all tired. Thanks for reading!

~Dee~

End Of The Year Already?

Hello friends!

I hope you're all well.  Life has been very busy.  J graduates from preschool in just two short weeks!  Where has the year gone?  It seems like he just started.  He loves it there so much, and has made so many friends.  I hope that he'll get to see them over the summer. His preschool is doing something fun, a birthday party for all of the kids who's birthdays fall during the summer months.  Isn't that sweet?  That way all of the kids are celebrated.  They always do such fun things at school, I love it!  This Tuesday they're having toast and jam for snack. J will love that!  Anything to do with food...he sure does love to eat!

So, we still haven't gotten 100% confirmation as to which school he's going to, but they've gone ahead and set up the school-level meeting. It'll be at the school that we're hoping for, so fingers crossed!

I've been trying a new method of helping him to control his temper and come down from meltdowns. A friend of mine told me that if I speak in a low-pitched, quiet voice, in contrast to his high-pitched, loud meltdown voice, that it would help to ground him.  It's working really well!  He had the mother of all meltdowns at group the other day, even getting so mad as to hit "C", and I was able to talk him back down. He even apologized to C without being prompted, which is a good sign.  When he apologizes on bis own, we know that he means it.

We've decided to do preschool work each day over the summer. Writing, tracing shapes, reading, that sort of thing, just to keep him in practice. He's been fighting M at school when they have work time, so we hope that doing work at home might work better.

He's been talking so much, mostly "why" questions, he's so curious!  It's nice to have real conversations.

Here's a conversation with him:

"J, eat your cereal."
"I want milk on my Cheerios please!"
*I pour milk*
"Mommy, I spilled my milk.  I will clean it. This is soooooo yummy. Does K have cereal?  Does K love her cereal?"

And year ago the conversation would have gone something like this.

"J, would you like Cheerios or toast?"
*J grunts*
"J, would you like some milk?"
*J grunts*

You get the idea!  He's come so far in his speech!  We're pretty proud.  I never realized, until having a child with such a severe visual impairment, just how much the ability to see affected the ability to speak.  Knowing that, I see how far he's really come.  You rock, J!

He's going to his first birthday party without us today.  Due to certain crcumstances,  my best friend is taking him.  He's going to have a wonderful time!

Have a great day!

~Dee~

A Shameless Plug and a Very Happy Boy

Hi everyone!  Hope you're doing great.
So, today J and I attended the Variety Club Boat for Hope. Volunteers gave their time and use of their boats to ferry kids around our neighboring city's inner harbour.  There were "pirates" handing out "loot" to each of the kids, random skiffs bombarding us with water balloons, misting hoses, and other fun stuff!  J was soaked, and giggling hysterically almost the whole time, even when a few water balloons hit him head on.  He had so much fun, and by the time we got back to land, we were drenched.

After that, there was a free barbecue, with hot dogs, chips and drinks.  The "pirates" played music, helped the kids build wooden boats, and maintained a bouncy castle.  There was also popcorn and sno-cones.it was a really well put together event, and everyone had a blast.  We even got to meet up with a friend and her family, which was great!  By the time we met back up with Daddy's mom, J was done.  He hasn't stopped talking about it since we got home.  Thanks, Variety.  You've made one four-year-old boy very happy.
Have a great day!
~Dee~

A Long-Overdue Update

Hello friends!

I'm sorry for the long hiatus, thanks for sticking with me. So...J WILL get his autism testing, sooner rather than later.  I'll be calling them back pretty quick to set it up.  Whichever way this turns out, we know it will be best for him.
He's been doing really well at school. He and A, a little girl who is very similar to him, have formed a real attachment. They hug as soon as they see each other, and they tend to play with each other rather than the other children. J isn't tantruming that often anymore, but when it does happen, M or B are finding ways to divert his focus, thusly ending the tantrum.  We've been going through a rather long list, trying to find if there's an underlying cause for his behavior. The last few days have been amazing and we're chalking it up to sleep - he's getting more of it.
I met with the Teacher of the Visually Impaired today. Her name is J.B.  She observed J all through class today, and has come to the same conclusion I have. J needs to remain in this school, even though we live out of area.  Daddy and I are thrilled about this. We've also talked about trying to move closer to J's school.
We're STILL waiting on the school level meeting...argh...
ST is over, there's no more available blocks before he ages out of the Centre. Hopefully, he'll be able to take part in at OT group that's being put together. It'll be him and one, maybe two other children.  He's still in OT and we see M on Friday.  We're working on improving his fine motor skills. He still has trouble holding a pencil and using scissors.
Potty training is OVER!  No accidents for almost two months!

As for K...she's doing very well.  Her ankles seem to have strengthened quite a bit (YAY) and she's starting to make more sounds.  We saw L from the Centre today, and she was pretty happy with K's progress. We're working on taking the soother away, hoping that will encourage her to use words.

If there's anything else you'd like to know, please ask!

Have a wonderful evening!

~Dee~

Hello Out There!

Wow, where has the time gone?  I'm sorry that it's been so long.  Life has been insane, what with catching a truly horrible flu, school stuff, and LIFE, haha.  I just wanted you all to know that I haven't forgotten this blog, and a huge update is coming soon!
~Dee~

Still Here

We're still here!  Life has been very busy, and we've had a few tough choices dumped in our laps. I'm working on a post to share what's been going on, just trying to get it all down the right way. Please be patient with me, it's coming!  I haven't forgotten this blog!
Have a great day!
~Dee~

Rough Days and Missed Meetings

Hi friends!

It's been a few days. Life has been a bit difficult. J has been spirited, to say the least. He's been back talking, disobedient...typical four year old. We're trying to be patient and hope that this stage passes quickly.  His therapist says that this might be encouraging, a cognitive leap. Trying to console our stressed selves with that fact is *not* an easy task.

We were supposed to have our family service plan meeting today. I got there...late. I had written it down, programmed it into my calendar, and my calendar CHANGED THE TIME. I almost cried. On top the the sheer "bad"ness of the last few days, this happened. It worked out, though. I got to talk to his OT and ST and we were able to come up with a plan of attack for the next few months. The center will be wrapping up J's care over the next few months, and that breaks my heart. They've been with him since he was a baby, and soon we'll close that door. At the same time, I'm excited. They have taught him so much, and taught me so much, and together we've helped J to come so far and overcome huge obstacles. They've given my child an amazing start to what I'm sure will be an amazing life.

Tomorrow, the woman who is helping to set up J's support for school, "A", will be meeting us at the school. We were supposed to see each other at the meeting, but that didn't exactly work out. We're going to start planning his school-level meeting. That'll be in a few months, and have as many of J's therapists and aides as we can manage to have there. I'm looking forward to seeing her, and getting the ball rolling.

The center is going to follow K for awhile longer, but there's no real concern. They just want to keep an eye on her and make sure she's progressing at a normal level. So far, she is. She's got a handful of words, and a world of diva attitude. Seeing the love that my babies have for each other, and the joy that they bring to Daddy and I, can make anything OK. We are truly blessed.

Have a wonderful night. Hoping tomorrow is a good day for everyone!

~Dee~

Q and A :)

Hi friends!  Hope you're well.

So, I realize that I've never really gone into detail about what's wrong with J's eyes. I have a hard time remembering everything that I'd like to say, and I always remember later, but don't like editing posts once they've been published.  So here's my solution!

Q and A!

Do you have a question?  Leave me a comment, and I'll answer you asap.

Thank you, and hope you're having a wonderful day!

~Dee~

Life and Progress

Hi friends!
This will just be a quick one, a little update about what's going on in the wonderful world of J.
He's learned the joy of play-acting, and his newest favorites are pretending to be a dinosaur "RAWR!  I'm a dinosaur!" and pretending to fly. He pretends to talk on the phone, pretends to feed his stuffed, pretends that he's driving. He loves to try to have K play pretend too, but I think she may be a bit young for that yet. They have fun, though, so I'm not going to stop them, haha.
He's been back-talking a lot, lately. It's really hard to not get upset, but I try to approach it calmly, letting him know that he has a right to his opinion, but that he doesn't need to be rude. This is a actually a huge step, therapy-wise. It's a whole new level of comprehension. I really think he's having a developmental leap. He's "getting" things that he never got before, asking complex questions and just acting older.

Quick K update, too. She has started using a word, in the right context. The word is "more," but it comes out "mo."  So super cute. She uses it all the time, whether she wants food, drink, or anything really. She is also asking to nurse, known as "na na's" around here. She just start saying "NA" and pulling at my shirt. I think she's going to start talking more, and soon. She seems so young for it, though!  She's not even eighteen months old! We're proud parents over here. Our babies are doing so well

I hope you're all having a great week!  See you soon :-)

~Dee~

Update and Easter

Hi friends!  I hope you're all enjoying the beautiful weather as much as we are. Easter has us busy. We went to a family barbecue, and the kids got to do an Easter egg Hunt. K was very confused, but she did have fun, and found a bunny all by herself!  J did awesome!  This is the first year that he's really understood, and he had a lot of fun. He found two bunnies, and a whole pile of chocolate. Afterwards, my sister divided everything up evenly. I love hunts like that. It's fun but still fair for everyone. Tomorrow we have another hunt, and dinner with hubby's mom. Steak, anyone?

J had Physical Therapy on Tuesday. His PT is great. She does tend to speak in a condescending way towards him, but I'm hoping that it's just because he is new to her and she hasn't had a chance to build a rapport with him. Time will tell.  He was everywhere, climbing and jumping and running. I think she was surprised that he was so fearless.  K followed him around the whole time, like a little shadow. They are so sweet together.

We got a call the other day. The special needs worker wants to come to J's preschool and observe him, to get an idea of his strengths and weaknesses. This seems like a great idea to me. They're really trying to get to know him as a person, to help him in the best way possible.  He's benefited so much from the help he's already gotten.

Oh, I forgot to mention...J has officially had no accidents for a month!  This is HUGE and we're super proud of him.

Well, that's all for now. Have a wonderful day!

~Dee~

Stream of Consciousness

Hi friends!

J had OT yesterday. As I mentioned before, his OT is great. They have a fantastic bond, and her and I have a great relationship. She's very open with me about what she expects from him. Yesterday, we worked on writing. Writing is hard for J because of his sight. M had a special board that had a sheet of plastic which fit over the worksheets, so he could trace on that. He practiced with spirals, dots, and lines, and he did really well!  After that, we went to their gym and they worked with body scooters. J has issues with the ground moving underneath him (swings, bikes, things of that nature) but he tolerated the game really well, and even tried moving around on his tummy.  K spent the entire time throwing - then retrieving - bean bags.
J was in his element.  He really enjoys the balance beams as well, and the ladders. The first time we ever tried to get him on those, he melted down.  He's come a really long way.
J's ST and OT have decided that he's finally ready for group therapy, probably with just one other child. I'm crazy excited for this. He'll be able to work on both OT and ST at the same time. It'll be really good for him.
We're trying a new approach with the kids.  I believe it's called Peaceful Parenting. We don't get mad. We talk it out. They both respond really badly to anger, and this way seems to be working. They both tantrum way less.
We start Physical Therapy this afternoon!  J has met the PT and seems to like her, so we'll see how that goes. He had a good sleep and a good morning, so I really hope that'll put him in the right frame of mind to try new things. While he does this, I'll be entertaining K and the baby that I'm watching. Fingers crossed for all that it's a good day!
Have a fantastic day!

~Dee~

First Post!

Hello new readers!  Welcome to the first post of my brand-new blog, the intention of which is to chronicle our family's adventure through the ups and downs of living with - and overcoming - severe visual impairment. Let me take a moment to introduce myself. I'm Dee, a thirtysomething mama of two fantastic kiddos. J is nearly five, and will be the primary focus of this blog. He was born with a congenital eye condition that as yet has no specific name, rather it is an amalgam of many other conditions. I have the same thing. K is nearly eighteen months old, and as yet has nothing unusual about her eyes, save for an optic nerve pit which is being monitored, and will be every year for the rest of her life. Despite any challenges, they are amazing, fun little creatures that fill our days with smiles and fun.

Hubby, who will probably be known simply as "Daddy" on this blog, is the breadwinner of the house, the other half of my heart, and the greatest man I have ever known. He's an amazing father, and never let's me get too down on myself when things seem at their darkest. We're coming up on seven years of togetherness, six years of marriage.  Best seven years of my life.

Now, back to J. He has so much support. He has been in one therapy or another since he was five months old, and currently has Speech Therapy (ST) and Occupational Therapy (OT). His therapists are incredible, and have helped him overcome what have seemed to be HUGE obstacles. He'll actually be seeing his OT this afternoon. She's a patient, soft spoken woman who manages to push J past his comfort zone at every session, without a fight. K comes along with us, and she seems to be benefiting just as much as he is.

J is in preschool, three days a week. He has an aide who works one on one with him, who also happens to own the school. Preschool has changed his life in so many ways.

Anyway, that's all I can squeeze in for now. Baby's asleep and J is clamouring for some Mommy time. See you soon!

~Dee~