Tuesday, March 27, 2012

Milestone!

Recently, we decided to night-time potty train Daughter because we didn't want to buy any more diapers for her. We had tried this once before when size 6 diapers just wouldn't fit her anymore, but it failed miserably. This time, a few accidents, but she's definitely out of the training pants forever. Tonight, for the second time in a week, Daughter woke up and went to the bathroom by herself!


Today I wrote this for Daughter to read. She usually stats to cry when I bring out letter work, but today, she took the paper and her pencil, and said, я пойду сама постараюсь. (I will go try this myself) She came back and with minimal assistance read it back to me! The areas where she copied the words were blank for her to fill in with her own ending verbally. She enjoys that little surprise of being able to create a little story. Her little reward for a job well done!

Sunday, March 25, 2012

Forgiveness

Following is a beautiful article on forgiveness, featuring one of my favorite people that I met at the DownRight Art show. Prepare for your heart hurting, though, at the cruelty in the world our children may face:


   JUSTICE SERVED, FAITH TESTED

Christopher Diedo may be known to Universe readers for his photographic talent and success, having been featured twice over the past few years but disturbingly, he makes news this time for very different reasons.
Chris aged 25 is the youngest of our three children. He is a delightful young man who has Down’s syndrome, severe learning difficulties and associated speech and language problems. He is a committed Christian and Catholic, choosing to attend mass twice every Sunday at St. Vincent’s RC Church, Dartford where he assists Fr. Patrick Zammit as a senior altar server with 18 years experience. Four years ago, he took up photography as a hobby producing some stunning images along the way and exhibiting at such places as, The Mick Jagger Centre, The Proud, OXO Tower and Strand galleries, as well as at The Truman Brewery, Brick Lane. He has been invited by the Malta High Commission to exhibit next year at the European Delegation Headquarters in London.
On Monday 28th March, 2011 a man appeared before magistrates in Dartford to answer a charge of assaulting our son, in Dartford town, last April. The defendant, who called Christopher a freak before punching him in the face, pleaded guilty to the assault and criminal damage to the wing mirror of our parked car. The man received a 170 day prison sentence for the assault and a further 80 day prison sentence to run concurrently, for the criminal damage. It’s clear to us as parents, that the magistrates recognised the disgusting nature of the unprovoked attack on this vulnerable and trusting member of society and sentenced, accordingly. We hope the length of the prison term and the vigour with which Kent police pursued the charges to gather evidence to secure a conviction will serve as a warning and deterrent, whilst helping the learning disabled visiting or living in Dartford, to feel more secure and safe on our streets. Interestingly, on 13th June Alex Dwyer, spokeswoman for Scope speaking on BBC TV news, reported a rise in the number of hate crimes/incidents against people with disabilities in the London area, citing the statistics as a disturbing trend for reasons which need to be addressed.
Thankfully, my wife and I were with Christopher at the time of the assault or it might have been far worse for him. We had just collected our son from a centre in Dartford where he had spent a happy day in the company of his friends and were heading for our car as three men in their 20’s were passing. Christopher asked one of them to let him pass as he was in his way. The man who was shirtless and unbeknown to us at the time, drunk and wearing a court tag around his ankle called him a freak. When Christopher protested, the man first accused him of calling him by that name. I intervened saying our son wouldn’t say such a thing and pointed out, just in case he hadn’t noticed that, he had Down’s syndrome and learning difficulties. The fit looking, muscle bound man said he didn’t care and punched Christopher in the face. Did I stop to remember my Catholic upbringing, turning the other cheek and exercising self-restraint as Paul advised in his letter to Titus? I’m afraid I did not. I punched the man straight back in the face, as much a reflex action as it was in self defence of my family. We fought in Dartford town centre while my son wisely took refuge in the centre he had just left. Eventually, the police arrived and arrested the man. Christopher and I were taken to hospital to be checked because of injuries sustained.
Christopher was so traumatised by the attack that he later tried several times to leave home, saying he was afraid the man would come and find him and burn our house down. Our doctor referred him to a clinical psychiatrist who targeted some excellent support, doing much to get Christopher back on track to feeling confident again about venturing out, a confidence built up painstakingly over the years but shattered in a moment of cruelty, ignorance and rage.
The man who was bailed on condition he stayed away from us, saw us in town shortly after the attack and approached apologising, blaming his behaviour on drinking whisky which he said got him into trouble. He assured us he was a reformed person and asked us to shake his hand and accept his apologies. With more time to think and not sensing any immediate danger, I must admit to thinking things through before giving him my answer. I told myself that I’m a Catholic, that none of us are perfect, least of all me and that I turn to the Lord time and time again, having faith in God’s compassion and promise of forgiveness to those who trust in Him. I reminded myself that the Lord forgives us so we must do the same and forgive our neighbour. Despite all that I’d convinced myself of in my head, I still couldn’t shake his hand but then something happened that shook me into seeing how wrong I was, how tied up in outrage and condemnation I’d become: without any prompting, after I’d refused the man, Christopher extended his hand and shook the hand of the man who had attacked him verbally and physically. I felt humbled by my son’s readiness to forgive and move on and in an instant remembered what was called for and what I should have done first as a Christian and the head of my family, forgive the man and shake his hand, which I then did. It was left to our son with learning difficulties to show us the right way forward and by example, remind us of those words in Ecclesiasticus: ‘Resentment and anger, these are foul things and both are found with the sinner…. Forgive your neighbour the hurt he does you and when you pray, your sins will be forgiven.’ Well done, Christopher!

To see some of Christopher’s pictures and learn more about him, look at his website: www.christopher-diedo.co.uk
Andrew Diedo, Parent. June 2011

Thursday, March 22, 2012

World Down Syndrome Day

I didn't have a chance to post yesterday, because we were doing something *amazing* - we were celebrating the first annual World Down Syndrome Day!
Son (7 years old, mind you) made his artistic debut in an art show in *New York CITY!*(as Son likes to emphasize)  He was one of only two children on display. As one of the many things Son's teacher has done above and beyond his requirements as a teacher, he submitted four photographs that Son took using his school iPad.
the two photographs on top are Son's


When Son's teacher contacted the organization, Alexander's Angels, he was told that this was a professional art show, but to submit the photos and the curator would decide what to do with them. Needless to say, obviously the curator approved them, because here we were last night, making our way to Son's favorite place (he told us he wants to live there).



Yes, part of me thought the whole thing was funny - I mean really, it wasn't like Son thought about the composition of his photographs, or the message he wanted to send. He chose the filter he wanted to use, and had fun with it. But isn't having fun part of it? Sometimes the more thought you put in, the worse it comes out. Maybe he really will be a photographer someday, and maybe this experience will help shape him. Regardless of his future, it was a great experience, and I believe it helped shape me.
I came away with a renewed hope in the future and the knowledge that just because you have a disability, does not mean you can't be a good artist. Some of the paintings were being sold for thousands of dollars!


the one on the left was amazing - and a three dimensional painting

love these!

weaving


I enjoyed chatting with the featured artists. It was refreshing to see how proud they were of their work, without any of the false humility that tends to hover around the rest of us. I know that pride is not one of the virtues, but if you have false humility, it kind of rots the intention. It was beautiful to see that openness - this is *my* work, and I'm not afraid to show it! For one of the artists, it was more important to show me his name in writing next to his paintings than to show me his actual paintings -"I'm right here, and I'm right here, and I'm right here" Another young woman stood seriously by my side as I examined her work. When I complimented it (it was really awesome), she solemnly said thank you, and then she couldn't hold it in - she smiled wide, and tried to cover it up. I love moments like that.
At one point, I was waiting to speak to someone, when out of the corner of my eye, I saw Son stick his tongue out at someone and smile. Who is he doing that to?! I thought. Turns out, a man with Down syndrome was egging him on, and I said, laughing, "What is going on here?" "Nothing!" he replied, and proceeded with, "I'm an artist!" So of course, I had to get a personal tour of his work.
The featured artists were from all around the whole world - Australia, England, the United States, to name a few. One young photographer flew in from England for the first time. He told me that he watched a really scary movie on the plane with werewolves in it that he turned off and opted for Toy Story 3. A good choice, I thought. I was very touched to notice that he came with his sister, and his sister was taking every opportunity to introduce her brother to the other artists. So this wasn't just about showing your art and being seen, it was about making connections, uniting ourselves to a common purpose, and furthering our exposure and building our relationships.
I was so happy to have a supportive representation of people in our life. Of course Son's immediate family (we even brought Baby, and he was very well behaved for a 17 month old), and my parents, but also family friends who have supported us in every Down syndrome endeavor to date. And I can't forget Son's teacher and speech therapist who spent all day at the UN attending events for Down Syndrome Day, and then came to the reception at the art gallery. Wish my sister could have been here for this...

the entourage
Son's teachers with photography in the background

 The show is from March 21-March 29, so if you are in the area and have a minute, it is really worth your time! 28on27 - 28 27th St, NY, NY (between Broadway and 6th) on the second floor.

Monday, March 19, 2012

Pathfinders

At the conference on education children with Down syndrome that I went to a few weeks ago at CW Post, the key note speaker spoke of pathfinders in our lives. People who have worked through obstacles, making a trail for people to follow. I don't want to say paving the way,  because a paved road would be easy to follow, and much of the time, the roads we travel are not paved. They are paths that are barely visible, if they've ever been walked. They are overgrown, they are unexplored territories. There are many pathfinders in life. Were you a pathfinder for someone? Who was a pathfinder for you?
I can think of many pathfinders in my life. Most recently, in the area of my life that seems to be biggest mystery, they were the women who shared their knowledge and their wisdom on educating their special needs children. They are the women who saw the potential in their children and chose to reach that higher bar, to stray from the road more traveled, to head into the unknown. They are the women who saw potential in my son, and without any pressure shone their beacon of light on me, and gave me a path to follow.
I also find strength in the people around me, and if not pathfinders, they are the people who guide me on my way, pushing me back on the path that I've chosen. They are the ones who listen to my woes on a bad day, and rejoice in my happiness on the good days. My history, my upbringing, and my ideals also play a big role in keeping me on my path. They are the ones who remind me of my goals. They are the ones who support my decisions, or question them when it seems like I might have lost my way.
As I travel along my path, I hope I make it easier for someone else down the line, and I hope I can provide the same support I receive, when that support is needed.

Tuesday, March 13, 2012

"Listen to your children, because they have dreams too" ~Joann Ripp

Life is a rough ride sometimes. It's tough to know that what you're doing is the right thing, and if it's the wrong thing, it's tough to decide to stop doing it. That's what life has taught me thus far. But I also know that once it's right, you feel amazing.
Almost six months into working full time, I am beginning to see the effects on the children. Any time I approach within five feet of the back door, even if I'm not going anywhere, Baby freaks out. Daughter shadows me every minute I am home, and sobs if I have to leave. Last week, I had go into work early, and couldn't drive Son to school. I told him that Papa would be taking him to school, and the next thing I know, Son is standing in front of me, still in his pajamas, with his coat, hat and shoes on. I didn't even know that Son was capable of putting on his shoes! Needless to say, my heart broke having to leave him at the door. Think scenes from movies where a parent is leaving a child for good, and the child packs a backpack and runs after the car screaming, "Take me with you!" Sigh...
Last week I attended DSAF and the Center for Community Inclusion's semi annual conference on Educating Children with Down syndrome. Last year's spring conference was a catalyst in getting me to question Son's placement. One thing reverberates in mind after the conference, and it is this: "You have to listen to your children, because they have dreams too." ~spoken by Joann Ripp, a 45 year old woman with Down syndrome, speaking on how to determine careers for young adults with Down syndrome. I can only hope to remember those words when it comes to guiding my children on a path.