I was just thinking about it, and I realized the overwhelming diagnosis that broke my heart and stole my life has become a simple fact that adds so much colour… I have a hilariously smart, quirky, loving little boy. I don’t know who he’d be without autism. I don’t want to know. He’s amazing. I’m not saying life doesn’t still have challenges related to his autism. I’ve just realized that I really don’t mind anymore.
As I’ve gotten older I’ve found I have less and less respect for rules that aren’t actual law. Take any “rule” and ask where it came from, and if you actually respect the authority of the source. Do you understand and agree with the reason for the rule? Choose to keep it or throw it away, but think about it first.
Always and Never,
Rain bleeds grey,
My eyes, my heart, my soul.
Bleeding in the rain.
I finally decided to finish the painting I started last summer…
I started it because of the song “My Lighthouse.” I heard it in a church and loved it the most for about two weeks… I do that with music. And now it’s one of my son’s favourite songs and he loves lighthouses But anyway, I had a dream once where I saw a purple sky full of stars, and that’s where the background came from. So not much to this painting really, just pretty. The white spots are stars, and the purple spots are there because I just felt like it.
I wait all winter for this nonsense. Mainly the pink trees and the lilacs… And then I spend as much time outside as possible because it all fades so fast.
I never go to Photo Club except for field trips. I got the email about this one, and I’ve been wanting to wander around downtown with my camera for a while… I got my dad to drive me, because carpooling and I hate going places alone and he’s pretty decent company😉
I love graffiti. I stuck with my dad the whole time, he followed me around really… And he scared off a creeper for me. It was pretty good though (and fairly abandoned.)
There’s a few more on flickr: https://www.flickr.com/photos/97297407@N06/
“To love at all is to be vulnerable. Love anything, and your heart will certainly be wrung and possibly be broken. If you want to make sure of keeping it intact, you must give your heart to no one, not even to an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements; lock it up safe in the casket or coffin of your selfishness. But in that casket–safe, dark, motionless, airless–it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. The alternative to tragedy, or at least to the risk of tragedy, is damnation. The only place outside Heaven where you can be perfectly safe from all the dangers and perturbations of love is Hell. I believe that the most lawless and inordinate loves are less contrary to God’s will than a self-invited and self-protective lovelessness. It is like hiding the talent in a napkin and for much the same reason. ‘I knew thee that thou wert a hard man.’ Christ did not teach and suffer that we might become, even in the natural loves, more careful of our own happiness. If a man is not uncalculating towards the earthly beloveds whom he has seen, he is none the more likely to be so towards God whom he has not. We shall draw nearer to God, not by trying to avoid the sufferings inherent in all loves, but by accepting them and offering them to Him; throwing away all defensive armour. If our hearts need to be broken, and if He chooses this as the way in which they should break, so be it.” -C.S. Lewis
I love this book. I’ve been reading and re-reading it for years…
“A new command I give you: Love one another. As I have loved you, so you must love one another. By this everyone will know that you are my disciples, if you love one another.” -John 13:34-35
I’ve had the concept of this painting in the back of my mind for a while. The verse came to me recently, and got me contemplating exactly how he loved us.
He died for us of course, that’s fundamental to our faith. “While we were still sinners, Christ died for us.” (Romans 5:8) We think about the physical pain, the beating and tearing of his skin, the blood loss, and the agony of trying to breath while nailed to the cross. And that gives us a picture of an intense and devoted love. How often do we think about the emotional pain he endured at human hands while physically suffering to save us? He was betrayed, and he responded with love. He was abandoned by his closest friends in his darkest hour, and he persevered in loving them, and us, alone. He was mocked, insulted, assaulted, wrongly condemned, handed over to a bloodthirsty mob to be murdered… And he just kept loving them. He could have stopped it at any time and he just kept walking in love to his death on the cross.
And that’s how we’re supposed to love each other…
When my son was born I thought I had a healthy baby boy. And I thought that for two years. We started noticing he wasn’t learning to talk like our friends’ kids were. His Sunday school teacher said something to us about it and we got him into speech therapy. We had a lot of family members telling us he was fine, that some kids learn when they’re three or four and not to worry. His speech therapist asked us if we wanted him referred for an autism assessment. She wasn’t suggesting he had it, she just said we could check if we wanted to. I thought it was a good idea so I could finally stop worrying about him.
He had his assessment when he was three and a half. There were two psychologists and a pediatrician. We thought he was doing okay. He was obviously behind where they thought he should be. I thought that was because I was a young mom and I didn’t know what I was doing. They didn’t give us the results that day.
We weren’t supposed to have him with us when we went back. We took him to our friend’s house and we went to our meeting. I was expecting to hear them say he didn’t have autism. We sat at this big table in a boardroom with all these strangers and they told us our son fit the criteria for Autism Spectrum Disorder. I think I went numb. My husband started crying. They kept talking. They said he was too young to tell us how severe it was. He might never learn more than a few words. He might never learn to use the bathroom independently. He may never move out. We were given a pile of papers to take home. They said he had government money, but it was up to us to figure out how to spend it. We left. We got in the car and I started crying. I remember the world literally looked darker than it used to. Josiah wanted to get coffee before we went back to the babysitter. I didn’t want to but I went. I sat in McDonald’s and stared at my coffee cup with tears rolling down my face. Some people were looking at me and I didn’t care. I don’t think I spoke.
I barely remember picking him up from my friend’s. I didn’t want to see her when I had news like that. We went home and I just cried. We called our family members. I made a few calls myself, and I let Josiah make some of the calls I should have made because I just couldn’t. Some people cried when we told them. Some people didn’t understand why we were crying. Someone said, “You’re acting like he died. It’s just autism.” Except it felt like death. It felt like we’d lost our son. We’d thought we had a healthy little boy who was going to have a childhood and do kid stuff and grow up and move out and have his own life. All of that was gone and replaced by the cruel reality that the rest of our lives could be spent dealing with the worst parts of autism. I was told I would have to fight for him his whole life.
I couldn’t deal with it. I gave myself a week to cry, and sleep, and feel the loss of my son. Then I picked myself up and read through the papers and we figured out his funding and found therapists for him and started dealing.
I went with him to his speech therapy once a week, and dropped him off at his behavioral therapy five days a week. I stayed with him sometimes. They were wonderful and encouraging and they promised me it would get better. But it still hurt so much. For a long time when I looked at my son all I saw was autism. When he flapped his hands or shrieked or stared at the lights instead of people. We stopped taking him to public play areas, like at McDonald’s. It hurt too much to see him around other children. His behavior was so starkly different.
His therapists were right, of course. It’s gotten so much better. He’s communicating really well and he’s been taking care of himself independently and he’s even learning how to have friends. It’s far more than we were told to hope for at that first meeting. It’s still hard though. He has a full time EA at school and we have to have special meetings to talk about his progress. It’s still hard seeing him with other children his age and noticing how different they are. We never let him play outside unsupervised, and we really only trust my dad to babysit him. He’s just so unpredictable and it’s so hard trying to explain to people what to watch for. For example, a few weeks ago he had a welt on his head because he thought he could fly like Superman and just jumped off the playground before his EA could react. She’d been working with him every day for a couple months. As his mom, at this point, I know him so well I usually know what he’s going to do before he does it. That’s not something I could teach someone else.
I wrote this blog because this topic comes up a lot with people. I always thought I would write it down one day… It doesn’t feel finished. There are a million more things I could say. I guess this is all I needed to say today.