A tender moment

I was in his room helping him get ready for bed. The whole process takes about 90 mins. He has to have things a certain way in order for him to go to sleep so it's quite labour intensive. While we were getting things set up I was singing the song "Baby Mine" from Dumbo. I've been singing it to him since I was pregnant with him.

After we set everything up then I crawl into bed with him for stories, a back massage and then I wrap him in his weighted blanket. As I was singing I wasn't really paying much attention to what was going on with him. So I turned around to get him situated in his bed and he was curled up in a ball in the middle of his bed (only in his spiderman undies...how cute is that!) anyway...I thought he was fake sleeping and I was starting to feel frustrated so I told him to get up to his pillow and lay down properly so we could do the rest of our night time routine. So he did and when I saw his face, he was crying!

So I curled up next to him and said "honey...what's wrong?" And he said "I don't know. You were singing to me and my eyes filled up with tears but I don't know why."

Ok, so the water works started on my end as well and he kept trying to wipe away his tears. So he snuggled into me and I thought I was going to melt into the bed.

It's a tender moment in itself...but this is why it's so amazing to me. Superman can't relate to a lot of emotions. Given that the front of his brain (which is responsible for all of your emotions) doesn't function properly, he doesn't make a lot of connections in the same way most kids do.

This type of moment has never happened. Ever. He'll cry because he's hurt, sad, lonely. But he doesn't cry because of an emotional connection. That's what happened tonight even though he doesn't know it. I wish I could bottle it because I don't know when it will happen again. But to see that little glimpse into the possibility that it exists, was beautiful. It's moments like that when I realize that I was meant to be a mother. The days can be so incredibly hard, but I wouldn't want to be doing anything else than what I'm doing right now.

For anyone who doesn't know the song, Alison Krauss does a great version of it. These are the lyrics.

Baby mine, don't you cry
Baby mine, dry your eyes
Rest your head close to my heart
Never to part, baby of mine
Little one when you play
Don't you mind what they say
Let those eyes sparkle and shine
Never a tear, baby of mine
If they knew sweet little you
They'd end up loving you too
All those same people who scold you
What they'd give just for
The right to hold you
From your head to your toes
You're not much, goodness knows
But you're so precious to me
Cute as can be, baby of mine

A moment worth celebrating

We made it through the entire grocery store today without a single meltdown and only about 2 mins of high anxiety. I brought my iPod so he could listen to his music if it was too overstimulating. When I asked him if he wanted to listen to it, he would say "No. I'm okay right now." To most this would be nothing, to us, it's the world.

Finding happiness in the little things

It's been an interesting couple of days. Superman has had some crazy meltdowns but he's also had some incredible moments of flexibility and problem solving. I find that the hardest part to being the parent of an autistic child is the lack of predictability. You never know when you'll find yourself in a crisis situation.

I'm reading a book right now called "More Than A Mom" and it's about finding a balance in your life when you're the mother of a special needs child. I love it. It's my second beside bible so to speak. It reminds me what that I have to put myself on my own to do list because it's so easy to get caught up in your childs needs and issues that you never make time to fulfill your own needs.

My health has been touch and go for the past month. To much stress, not enough sleep, not enough down time.

Christmas is always crazy around here. Lots of family birthdays in November, then Christmas, then New Years. I feel that we can finally breathe when February hits.

Ladybug is getting cuter by the day. Her cousin turns 2 tomorrow and they had a party on the weekend. I loved watching her run around and get excited by the balloons, when she saw her cousin, when we went swimming in the pool. Good times.

HB and I are doing well. We're trading off who's at home and who's going out to do whatever. But we rarely have time to ourselves that isn't interrupted by work or kids. That will hopefully change in the spring. We're flying my Mum up for a few weeks and I told HB we're going to Vegas for 3 nights. We need it. We deserve it. I think our marriage has never been better than it is right now. It feels good.

It's almost time to leave to get Superman so I should sign off. I'm just trying to take one day at a time. Can't handle too much more than that at the moment. We've got a lot of things that will be happening soon in terms of more medical care and therapys for Superman so I'm trying to make sure we've got our bases covered and keep on top of other people who are involved to make sure they're doing their job as well. I filled out paperwork for one of the clinics we've been referred to and there were 52 pages! Most pages had at least 20 questions on them. My brain hurt by the time I was done. ;)

I wish our days were reliable

This week has been tough in some respects. Out of 5 school days, Superman has only gone for two days. His EA was out Mon, Tues and Thurs. It's so tough because we don't know if he's going or not until 9am on the day of. If we don't get a call before 9am, he's going to school. He only attends half days as it is (1-3:30pm).

When I was at the symposium for three days, and HB was at home with the kids he had a chance to do what I do every day and he realized that with Superman being at school for such a short period of time that I have don't have time to do anything. By the time you drive him there, drive home, put Ladybug down for her nap, you have 45 mins before you have to wake her up, change her, give her a snack and drink and drive to school again to pick up the little man.

That's a lot of anxiety to live with. It means not making plans because 90% of the time you have to cancel them.

I asked HB to keep in mind that has the company makes plans for 2007 that I really want him to take some vacation time this summer to go out east with us. He's going to try. It was supposed to happen last summer but everything was too crazy at the office. I'm hoping this summer he'll be able to go. If not, the kids and I will still head out and I've got a family member who is great with my kids that can come with me.

Parental Burnout and the wonders of a weighted blanket

I could seriously use a good dose of travel. I'd pick either vegas or someplace tropical. I'm like to take HB with me but considering that would leave no one to watch the kids, I'm happy to go on my own. ;)

Superman's autistic days are outweighing his neurotypical days. The past few have been particularly tough. Lots of climbing and hyperactivity. Then the weighted blanket arrived. What a godsend! It's like he melts into a puddle the moment I lay it on him. Last night it only took him 40 mins to go through his bedtime routine AND fall asleep versus the usual 2 hour ordeal. What a nice change.

Tonight I'm off duty as of 6pm. I'm headed to Geneva to attend a workshop on Communication with autistic kids. Given that my brain is still full from my 3 days at the Symposium, a part of me does want to go but I know I'll be happy I did once I get there. Plus, the hour long drive there and then back again will be an opportunity to have some peace and quiet on my own.

We're waiting for the next step

We've had a busy week around here. On Monday night, I have a long talk with my cousin A who is a well known dev ped and she has been such a huge support and wealth of info. I like to bounce ideas off of her and gather info.

We talked a lot about where things are with Superman right now and where we need to head next. She was so great about advocating for me with the new dev ped that I want to see. She called him up and he said he would be happy to consult. His wait list is quite extensive so I'm lucky to have someone to help me get my foot in the door. After she spoke with him, I went back to our GP to get another referral, this time for the dev ped and she was great about it. Not an issue at all.

We're going to start Superman on puffers for his possible asthma. He would find the testing too stressful to go through so this way we can see if it makes the coughing disappear (if it does, it's asthma) and if it doesn't, it's probably a tic.

We're at a crisis point with the number and the height of Superman's meltdowns. When it comes to his anxiety, his score from 0 to 100, sits at a 60 and it takes very little for him to jump to 100. When he gets frustrated, his window of opportunity to problem solve before a complete meltdown is between 15-30 seconds.

He's not integrated with anyone at school right now. He attends from 1-3:30pm and is one on one with his EA. I spoke his Mr. S last week and he said the morning EA should be starting in another week to a week and a half. THen it will take Mr. S a few weeks to train him/her before Superman goes back to attending full time.

I've spent the last two days over at the neighbours house doing a bit of babysitting. Superman and Ladybug loved it! They have two daughters, ages 4 and 7 and they are simply the most fabulous little girls I've ever met. So loving and funny and accepting.

A, their oldest is very nuturing towards Superman and tries to understand where he's coming from and why he does what he does. He decided to turn their basement into "kidland" and was referring to different parts of the basement as different areas (one area was the head office, the other, with the tv, was the theatre etc) so A would refer to the different parts of the basement in the same way. And if she forgot which area was what, she would ask and then correct herself. She's so patient and tolerant. It's a huge testament to her parents. And sweet little R, their youngest is a little bundle of vim and vinegar. Today she told me she was at the doctor yesterday because she had to get a "shoot" in her arm. LOL!!! So adorable.

I feel blessed to have them as friends because they're very accepting of Superman and his quirks and strive to learn as much as they can.