April 27, 2011
I will however take a daily photo... so you won't actually miss anything. My goal here is to teach patience. :)
April 24, 2011
April 22, 2011
April 21, 2011
In March I went to yet another appointment where I felt unheard and where my words were twisted and used against me (or Josh really). I left that appointment upset and frustrated and more determined than ever to get to the truth, to face the truth. I had to do some soul searching, was I in fact in denial? Autism is a very serious and scary illness and maybe I was just afraid to deal with any more health issues with Josh? I did research, I read study after study on behavioural developmental delays, speech delays. I did research on the effects of multiple general anaesthetics, on the medications that he has been on, and on the effect of pre-maturity on the development of the brain. I collected data, I video taped Josh in his natural environment, away from doctors and tension. Basically I worked hard, and often late into the night, to get to the truth.
This is what I learned. I am NOT crazy, delusional or in denial. If Josh had autism I would cope with it just as I have coped with his heart issues and stroke issues. We would get him the help he needed and we would enjoy every minute with him. We would without doubt or hesitation love him regardless of any diagnosis. However, I will not stand by and allow someone to label him with something he doesn't have. He has enough to fight through in life without an added label that is false. As his mother it's my job to be his advocate. It is my role to get him the help he needs yes, but it's also my job to make sure that he isn't being forever tagged with something that he doesn't have.
I phoned my nurse at the Stroke clinic at Sick Kids hospital and spoke at length with her about my concerns regarding Josh's development as well as my worries about a false diagnosis. This nurse is amazing, she spent close to an hour on the phone with me and discussing all aspects of my worries. She fit me into a clinic visit long before we were due for one and she called in favours to make sure a child psychologist was on hand for the appointment.
That appointment was today. I have to admit to being a little concerned about it, would Josh be himself or would he turn shy and nervous (as he does at Doctor appointments, naturally of course). I should never have feared, I forgot that God is just as much Joshua's advocate as I am and let me tell you he did one hell of a job advocating today!
The doctors listened to me intently, Joshua showed no nerves, no shyness, in fact he was totally and completely himself, as he would be at home playing with Tim and I. He was involved, he chatted and communicated better than he usually does, he interacted with the doctors, played with their toys. I had a lump in my throat because this was the Josh I had so desperately wanted them to see. This Josh, the one I had bought a video camera to show them, he was there in full force. No video needed! God is awesome!
The child psychologist listened to all my concerns, I admitted that it was possible that I was in denial but that I doubted it, but that I would be willing to hear her opinion. She smiled and said...'the last thing that I would think of when looking at that little boy is autism.'. She then listed off all the reasons she felt that it was a case of miss diagnosis (he hadn't actually been diagnosed yet but you know what I mean). She explained that in a rush to catch things like autism early so as to get early intervention, they too often catch kids up in a net. Then she said what I had been needing to hear all along without realizing it... she said 'you are right to listen to your gut, I believe he has some developmental delays (of which I fully agree with her) but those are due to his health issues, his stroke, the medications, the amount of time he has spent on his back sedated in hosptial'. She said everything I had been saying, but she was an expert! I had been heard and I knew it. Even if she had agreed that it could be autism, there was something so refreshing about being heard, to have someone sit and listen, repeat my concerns and then in a matter of fact way state their opinion. Of course I also really liked that her opinion was in line with my own. :)
There are concerns, of that there is no question but the reality is that things are coming along as expected for him and they believe he will catch up quickly. There is weakness on his right side, a side effect of the stroke, it can be treated and fixed with physio. There are concerns with his speech, of which he is improving in leaps and bounds. So, does Joshua have delays? Yes. am I in denial about that? No and finally someone who is an expert is in agreement with me on that.
Let me be clear. I have no pre-conceived ideas about Autism, it's a devastating disease for the patient as well as the family but it doesn't need to be as dire as everyone says. Life is possible with autism, although most people think of rain man when they hear that word. No, I am without doubts or hesitation clear that if Josh had been properly diagnosed with this dreadful disease I would have worked through it, loving him regardless. I just didn't want them to judge him without the full information, without seeing how his is outside of their offices, without making allowances for the life he has led to this point, the setbacks he has overcome. This little boy is a miracle and the few delays he has are nothing compared to what he should have. Neurology, Stroke team and the children's psychology department are pleased with his progress, as am I.
The biggest thing I learned today? That God shows up, even when we have forgotten to ask him.
April 19, 2011
This week I have heard of three deaths, THREE deaths, of kids in their late teens or early twenties that were born with heart defects. Now, my rational brain hears these stories and says, 'they may not have had the same defect'... oh, I know that not all cases are the same, I understand that Josh's case is different from others, and in some cases worse and in some cases better. I thank God that he is here, every day that I have with him, to enjoy his laughter, his smiles, his hugs, his silliness, his voice, his touch, his hugs... every single moment I get to share with him is a gift that I try not to take for granted.
However, then I hear things like these three deaths and this fear that hides in the shadows sneaks up and causes nausea to creep into my tummy. If I allow myself to think about it, even for a moment a panic causes my eyes to tear, my heart to race and my stomach to rebel. Will it always be like this? Will this fear ever leave? Will I ever be able to hear of these deaths, tragedies really, and not think of Josh, not worry about his future, not feel the sick dread of the unknowns in his life?
Why is it, that even though I know I have to enjoy these days with both my kids because we don't know what tomorrow holds, though I know I should not worry about tomorrow because today holds enough worries of it's own... why, why do I fear this more than any fear I have ever known before? Why can't I just trust God to do what is best, and then relax and enjoy the time I am given?
|I had a date with Kaleb at McDonald's yesterday morning while Josh was at his class... he insisted on coffee... (my son?)|
April 17, 2011
April 16, 2011
Every once and a while I stop and consider this, and still I am in awe. They are cute, funny, smart, and sweet and they get into the craziest things, they are independent and strong willed, stubborn and wonderful, and they came from the love that Tim and I share. It amazes me that we could create something so incredible, something so wonderful.
When they laugh, when they snuggle up to me with a book, when they rough house, get into trouble, make a mess, or have a freak out, or simply smile for no reason at all or every reason in the world, they are a wonder to me.
April 15, 2011
April 13, 2011
My question is, why don't the guys get dressed up anymore for dates? Do we not rate a guy making an effort for us anymore? When did it become okay (outside of high school) for a guy to take a lady for dinner wearing jeans and a hoodie?
April 12, 2011
This of course won't change my blogging, it will just be an added bonus (if of course you can call it a bonus).
It's still morning... I don't have one yet... unless you want a shot of my coffee and messy kitchen... so hold your horses and check back later ;)
See you soon!
April 11, 2011
Kaleb's day - Breakfast, TV while Mum gets ready, Hang out with Mom during Crafty creations, eat snack, park, lunch, nap, snack, TV time (quiet time) backyard, dinner, playtime in playroom, bath.
Mummy's day - get kids ready for crafty creations, get kids in car, drive to crafty creations, drop Josh off, entertain Kaleb for an hour, pick Josh up, drive home, clean kitchen up, lovingly give kids to a friend for an hour while I fold and put away all the laundry, make lunch, clean up from lunch, put Kaleb down for nap, get Josh to play outside while I do paperwork for Horizons, get Josh cleaned up after his playing in the muddy backyard, get paints out so he can paint, throw in another load of laundry and bring up the new pile to fold and put away, clean up the paints, get sinks ready for 'water play' (ie, clean up from paints), get Josh re-dressed, give him a snack and dry up the messy wet floor in kitchen, clean and organize desk and kitchen cabinet while Josh watches word world 2x, get Kaleb up from nap, get snack and milk for him, put dinner on, put kids in back yard to play, work on Blog, finish paper work and booking new clients, finish supper, call boys to eat, fight them through supper over wether or not they will sit and eat at the table, throw the food at the dog, or just generally not want to eat, clean up both kids from supper, send kids to playroom to play, clean kitchen, put away supper, quickly tidy playroom, get bath started, supervise bathtime, get boys into pj's, read two stories, sing one song and make sure both kids have monkey, and tigger... turn off lights and go back downstairs... clean up living room, get into gym clothes, Tim comes home, say hi, walk to gym, work out, enjoy de caf on the walk home, talk with Tim for half an hour, go to bed... do it again tomorrow...
April 10, 2011
welshprincess75's photostream on Flickr.
Yesterday I tried something new... and I had the best time learning EVER! What a high! Food and Flowers! Two great things! God is good... it was all him this time! I had no idea what I was doing and had to pray all the way to the shoot that I would figure it out! :) Thank you God for a fantastic shoot!
April 5, 2011
Josh has never until now been interested in colouring or crafts of any kind, I had thought that he just wasn't interested in the creative arts so I didn't push it, regardless of my own standing as an artist. I figured he was more his Father than me, and my hopes would lie in his brother. However, this past two weeks I have seen him develop an interest in painting, and colouring. He will sit and colour for an hour at a time, and his painting is done with patience and it would seem a detail to colour. He dips his brush carefully into the paint and he gently touches the paper, careful to stay on the paper or today it was a wood picture frame. He scribbles yes, it's not a clearly defined picture, but then let's go to the MOMA for an afternoon and stare at the dozens of other 'scribble artists' shall we? Is he the next big thing to strike the art world? Maybe not, but it caused me to wonder something that I have always sort of wondered about. Is art an innate thing that we have or don't have or is it something that can be learned? I would have said that you can't teach artistic style, that you can teach the mechanics of it yes, but can you train an eye to see something artistic? I am not sure, I haven't ever been sure. Photography is an art form unto itself in that anyone can pick up a camera and take pictures, claiming it's art BUT is it really art? You can teach them how to work the camera, teach them about composition and balance and light but can you teach them to look at the world and see art in the tiny details that God has created? The raindrop on a leaf? The mud on your kids boot? The light hitting the fence in just the right way? Is it just a picture without the feelings, without the emotions that are caught in the picture when taken by an artist? What makes one an 'artist'? I don't know but I would like to know and I would like opinions on the matter.