Friday, March 29, 2013

a beautiful email

I just have to share this. The following email came from Maribel, a blind mother of four offering me support and insight from a blind adult's point of view to help me with Hanna. I'm getting to know Maribel, and what an amazing woman she is. Her website and blog links will be at the end of this post for anyone interested. Her blog is definitely one that I think should be a part of everyone's daily reads. 
Let's just get to it. 

 Hi Jenn,

I have just come across your blog as I was doing some searches for people who blog about blindness / vision loss...
I think you and Hanna are amazing - love the story of Hanna getting her own stool to sit in front of the tv!

Her story strikes a particular chord in my own heart because you see, I am a person who has been coping with legal blindness since I was just tipped the 50's...and wanted to offer you any emotional support (or even advice or insights?) I can for your dear daughter who has a challenge ahead but with your love and support, she will find her way, I have no doubt!

What being blind has taught me is how we just have to find a way around to do the things we want to do - like Hanna does every day, it comes naturally to us to not think of ourselves as limited, we just have to do things a bit differently, that's all.

Like now, I use a computer with a screen reader called JAWS, he is a bit verbose but without the sound clues I couldn't do any of this - I am a writer and also have a blog so this screen reader is my life line to others through Cyber space which gives me a great feeling of independence.

I don't know what it is like to be the parent of a child with blindness, my own four children have been fortunate not to have my eye condition (RP) but I know my parents back in the 70s didn't do too well with the shock diagnosis - so I had to adapt a brave face and just do what I could, find other ways around the daily challenges and become very determined to keep moving forward in a safe and independent spirit...but also knowing when to ask for help = this took a LONG time to do!

It is only now as I am able to reflect, that one of THE most important things that keep me functioning happily in my blinkered view of the world, is the love and support I receive from not only family and friends, but the warm kindness from strangers I meet which has really surprised me. So I am able to graciously accept help from others and have learned, that by doing so, it actually helps them too by bringing a sense of compassion into their own hearts.

So Jenn, I am wondering, if there is anything you would like to know from the other side of the world, from the other way of 'seeing' that I can help you with in terms of helping Hanna in meeting her different needs? Although I think you are already very in tune with her and she seems to let you know but if you wanted an adult point of view, I am happy to share stories...

I write a blog sharing stories from my vision-impaired perspective and am currently writing a series called 'The Art of Being Blind' because I believe, like any trade or craft, we have to learn our way into the Art of functioning well as a blind person in a sighted world - gathering specific tools that help our craft and foster the skills and attitudes that work best  for each one of us. Sighted people do think it comes naturally but life can wear a few chips off our confidence meter and having ways to cushion our self-confidence on those difficult days, is very important to have at hand!

The current story is called 'It's touching to see the world' and has a small piece about my sighted child helping ME to see when he was four...

A previous story, part 3 'Insight through sound' may interest you as I talk about hearing = meeting people for the first time and what is going on in my mind to see / feel the vibes of body language.

I offer you these links as a friendly gesture to help you understand our world...not to promote myself - because I think the stories may be of interest to you.

I also wish you all the very best with your next arrival - maybe a mother's day present!
Good luck and I do hope this email reaches you (not put in the spam box by a web filter as can happen),
Cheers from sunny Melbourne, Australia

 So there you have it. Worth sharing, doncha think? I recommend reading her work. She's very inspirational, and her positive outlook is so refreshing.
Thanks again for this email Maribel. It truly made my day.

Sunday, March 24, 2013

baby number 4 update

The other night Yuli was over for a coffee, and we were talking about my pregnancy with Hailey. I couldn't remember too much. I had gestational diabetes, and they were going to induce me early. I couldn't remember how early I actually had her, or how much insulin I was on, or anything. So, we scrolled all the way back in the old blog to get some information. 
What I realized was that I didn't have nearly enough written down about my sweet Hailey. Hardly anything on the pregnancy at all! 
What I thought about then was that I haven't even said "boo" about this soon-to-be baby O'Hara. 
So, for document's sake, I'm going to just that.

Our newest peanut is due on May 10th. It's coming so fast! I feel really good, but I do have gestational diabetes again. I knew the risk of getting it was pretty high (95%), since I had it with Hailey, but I started the diet early on to try to delay it. I had the test pretty early, around 18 weeks I want to say, (usually it's at 28 weeks) and even though I passed it, I still checked my glucose levels daily, multiple times to keep an eye on things. 
By the time I was about 23 weeks, I was noticing that my fasting morning numbers were higher than they should be, so I brought it up to my OB. He sent me over to an Endocrinologist who put me on slow-released insulin before bed right away. I was now 25 weeks along. He started me at 8 units, and eventually gave me permission to adjust it as I needed to. I was told to inject into my abdomen. Yuck.
 Apparently, it's a good sign to have to add units as weeks go by. It means the baby's doing well. Now I'm up to 14 units at night, and he also added fast-acting insulin before breakfast. Morning is the only time that I have any problems. 
I have to check my numbers 5 times a day, and eat 7 times a day. It's hard to stay on such a strict schedule when I'm running around so much, and so busy every day. Sometimes I forget to eat, let alone check my numbers!  
Everything is looking really good though, and my Endo is really optimistic that since we caught it so early, we'll have a perfect delivery and baby. That's all we can ask for.
We have a few names picked out, for both a boy and a girl, because of course we're waiting for the surprise! But none that we've chosen as the "one".  
So far he/she reminds me of Hailey. Very active. All. The. Time.
My Endo said I'll likely deliver 1 or 2 weeks early, so that puts me possibly at the end of April. My OB might think otherwise, so I wont depend on anything just yet. 
I'm enjoying every single second this time around anyway. We decided this will be our last little one, so I'm cherishing every little ache and pain. Every single minute of "expecting". 
There will be many updates I'm sure in the coming weeks, since I decided I can't leave anything out. In the meantime though, I'm just praying that this little one is healthy and getting ready to meet all of his or her big sisters! 

Saturday, March 23, 2013

and she finds a solution

When we moved into our new place, Matt found it priority to mount the TV on the wall this time around. He's tired of little hands getting into all of his precious electronics.
The handy man that he is made his own mount to save on some money and built his own shelves right into the wall. Still needs some finishing touches (like me removing some of his games and putting pretty little things on those shelves instead) but I think he did a great job!
What we didn't take into account was our daughter who has a hard time seeing the TV unless she's right up to it. 
I still feel so bad that we didn't even think about that before putting it up so high. We've found different ways to make it possible for her to see, but today she figured out what she needed on her own. 
Still in the process of organizing, there was a bar stool in the corner of the playroom tucked beside the lamp. Hanna somehow managed to make her way through the aftermath of the "toynado" that went through the playroom and dragged out the bar stool that's the same size as her. I watched as she placed it right where she figured she needed it, went back out to the kitchen to get her drink, and comfortably sat and watched Pingu. 
       If we're watching a movie or something, just moving the couch out in front of the TV usually works out okay, and she's happy with that. I guess she figured she should find her own solution today, that actually did the job quite well.

Friday, March 22, 2013

"moe mott"

My little Hailey girl has quite a personality. She knows what she wants and when she wants it. 
She's a stinker. 
Every morning she wants her multigrain cheerios with milk and she sits at the little table all by herself and takes her time and eats every bit. Sometimes she'll ask for more, so I'll fill her little bowl again.
Lately though, she's started something new. 
She'll ask for her cereal all the same, but when she sits down at the table with it, she takes spoonfuls of milk until she can't get anymore without a cheerio making it's way onto the spoon.
So, she scoops out the cheerios with her hand, and continues to scoop up the milk with her spoon until it's gone. Then she'll say "MOE MOTT!" (Translation: "More milk!")
     My sister, Michelle came up with a genius plan. Give her two separate bowls. One with milk, and one with dry cheerios. So far it's working like a charm, and she's eating both the cheerios and the milk again.
What a little handful she is.

Tuesday, March 19, 2013

children's centre full developmental assessment

Hanna had her full assessment today at our local Children's Centre. Here's how it went:
We (my mom, me, Hanna and the coordinator) walked into a room where there were three different people sitting in there waiting for us. There was an occupational therapist, a speech therapist, and an educational consultant.
There were three chairs set up for us, along with the other three making half a circle around a little chair with a desk in the middle of the room. The atmosphere threw me off a little bit to be honest. 
Hanna strutted in there with us and climbed right up into one of the chairs that circled the little one. I think it took everyone by surprise, and showed a little bit of her personality, so it was a good way to start things off.
They invited her to sit in the chair "perfectly sized for her" and to play with some toys and she quickly responded with "okay!" and jumped down and sat right into her little chair. The OT sat down beside her and laid a bunch of toys in front of her onto the little desk. Hanna immediately grabbed the baby doll and gave her a drink from her bottle. She proceeded to tell them to "shh" because the baby was sleeping. 
There were different toys brought out and she was carefully examined by everyone in the room as she played. Watching and listening to everything that was being said or done. Hanna was so co-operative, surprisingly in the environment, and everyone was clearly, without a doubt impressed. They understood most of what she said, and the occupational therapist said that the "skills she's presenting are wonderful considering her vision loss". 
The SLP then sat down with her and listened to how she responded to her questions and quickly realized that her receptive language is age appropriate and she followed all of her directions very well.  She also noted some stuttering and obvious pronunciation errors with certain letters.
I asked to have an educational consultant sit in as well because I wanted to learn about everything that would be available to her in the school system, and any information they could give me about programs while homeschooling. I wanted to know our options. I've been feeling funny about homeschooling Hanna only because I think a regular classroom setting would be so good for her. 
They took Hanna into the PT room to see if she would be able to climb onto a regular bus, using stairs that were built exactly the size of a school bus steps. They were concerned that because she's so small she wouldn't be able to get up. She did really good, but the first step was a bit too high for my liking. If I was to send her on a bus I would be there to get her on anyhow. They were very impressed with her safety awareness while going up and down the steps as well.
We went over what a school would have to do before she started attending, like bathroom equipment to help getting on and off easier, etc. and if she would have a one-on-one helper throughout the day. It blew my mind when they told us she wouldn't qualify for a one-on-one. Just shows how well she's doing, but really? A legally blind child wouldn't have a helper in a classroom full of little kids running around? I wasn't happy to hear that.
Maybe it's because it's mainly play still in Kindergarten and it wouldn't be worth paying someone extra to just help Hanna play. I'm not sure the reasoning behind it, but I started leaning more toward homeschooling at this point. 
We also learned that we could have the option of sending her part-time for next year as opposed to a full day, every day. But then we started thinking, would that be fair to do that for a year, and then take her out? 
As we were leaving, our coordinator (who is a behaviour and social specialist) was talking about the school options again and made us feel really good about the co-op we have her in once a week with the homeschooling and the Early Years Centre she attends once a week with my mom. We got the idea from all of them that those things will keep her socialized enough, and kindergarten wouldn't be much different than what she's already doing. SO, I think homeschool is our best (and safest!) option. 
We were actually really surprised how unbiased they were with the homeschooling. Especially coming from an educational consultant, they didn't have anything negative to say about my wanting to homeschool, so that was pretty cool, and actually very unexpected.

Here's a summary of what the therapists had to say about Hanna. Coming right off of the document we received from the screening.       
       Occupational Therapy
"Good foundational skills. Age appropriate grasps. Poor strength and poor manipulation within hand. Switches hands to reposition objects. Vision impacts skills. Good attention, and comprehension of verbal requests. Small stature may require bathroom equipment."

Communication Therapy
"Demonstrates receptive language skills within age appropriate limits. Some concerns evident with speech intelligibility - errors t,v,g. Some speech dysfluencies noted - prolongations at beginning of a sentence." 

So, in a nutshell, Hanna did awesome. She qualifies to have Speech and Occupational Therapy there, at the centre, or at our home, and I am so excited about it. I already saw some awesome stuff that they can do that I would never even think about. For example, the OT purposely handed Hanna a toy the wrong way and held her other hand so she had to reposition it without using her other hand. Right there is an example of a simple, and I'm sure very effective little trick that I would never have thought of!
It will be great to have professionals working with her, helping her reach her full potential.  
We weren't sure what to expect and we were pretty nervous about this assessment. Maybe we're biased because we're around Hanna all the time, and we look past things. Turns out that even the "pros" agree. Hanna is an amazing and "sharp" little thing. 
She sure did make us proud!

Wednesday, March 13, 2013

such hard work!

And it's paying off!!
Michelle comes to work with Hanna every other week on different goals. Right now her focus is on making patterns and getting her more interested in drawing.
Check out these pictures. They show her progress with tracing lines.
 The zig zags were a little but tricky for her!

  She blew us away with patterns this week too. We started out by using objects with velcro on the back, and had her make patterns on a strip of velcro on a tray. This was tricky for her because not only did she have to really think about which object came next, she also had to use both hands so she could feel exactly where to place the object. The velcro and tray were the same colour. No contrast whatsoever for her. 
We used little buckets and shovels to start, and she did great! 
So, we used little sunglasses next. Two different colours, and she proved to be a pro!
SO, we figured we'd make it a bit harder for her.
We took two different coloured glasses, and a bucket. We started it for her. 
"Pink glasses, green glasses, bucket. Pink glasses, green glasses..."
"Bucket!" and she placed the bucket. We asked her what she thought would come next. She thought and looked for only a second, and said "Pink ones!".
Wow. She finished the entire row.  
This is huge progress. It shows that she definitely has to be in the mood to work, but she also needs to sit back and just watch and get instruction the first couple times. 
The hard work is definitely paying off, my girl! 
We go to Children's Centre this Tuesday for her assessment. We're nervous about it, but I think it will be very interesting and mostly just very beneficial for her. I'm so ready for it!