Stop the world I want to get off

Superman's favourite EA that he adores is leaving. Very valid reasons, medical leave. But I'm heartbroken for him. So he's left again. We're short staffed again. He has to start with someone new again. And there's just never any guarantee that who you get really knows what they're doing or they'll be a good fit. That class has seen 3 EA's leave already this year. When can he catch a break? We've been up against a brick wall for 3 years. I feel done.

Things are looking good!

I'm definitely seeing an improvement in Superman since starting his new medicine. More importantly, HE is seeing an improvement in himself.

Yesterday he came running up to me and said, "Mommy! I was going to go and grab Ladybugs head but I stopped myself!" I was over the moon happy and Ladybug ran up to him, wrapped her arms around his waist, kissed his belly and said in a little voice "Thank you Superman". She's very aware of her big brother's needs. It amazes me how intuitive she is for 2.

School has been going well. Unfortunately his favourite EA hasn't been able to make it to work this week due to an injury but Superman has really enjoyed his secondary EA and he's been able to stay his usual hours. Today was the exception because his teacher had to teach grade 1 music in the afternoon so they were short staffed. But they had him stay an hour later in the morning to make up for the hour missed in the afternoon.

What I had found exciting is that he usually has a meltdown if Ms. D is away but he's handled it remarkably well! Today they said he was a bit out of sorts but it's not surprising. Our usual 15 min drive to school took 40 mins due to a major road being shut down in both directions. So I thought most of the neighbourhood would head south to the next major street to head east. Therefore, I would be the incredibly smart one who heads north to take a country road east. Well, apparently the rest of the city thought the same thing because it was jammed packed! So the added stress of the longer ride, mixed with missing his EA, and then being told when we arrived that he would have a different pick up time definitely caused a bit of anxiety. But no major meltdowns. It was more along the line of emotional annoyances. ;)

So everyone is now home for the day and we're just having a quiet afternoon indoors. It's really cold outside and both of the kids seem overtired today. I put on a fire, cleaned the kitchen and just let the kids relax and read books or play with their toys.

They seem to be joined at the hip. One won't stray far from the other. I love seeing that.

It's been hard, but we're okay

Thank you to everyone who has been emailing me and wondering how Superman is doing. I really had no idea that there were so many regular readers on my blog. It looks like most of you have figured out that I write less when I'm stressed. (hahaha) So yes, you were right. Life was kickin me in the arse...but we're doing okay and I think (hmmm...I hope?) we're coming out on the other side of things.

So I talked before about the increase in the meltdowns the Superman was having. Wow. They were becoming more frequent, more tiring, and definitely more aggressive. His wee little sister seemed to be the trigger. Although obviously unintentional, it definitely pressed his buttons. So it got to a point where I never left them alone. At all. Superman could flip in an instant and I didn't want Ladybug to get hurt. That being said, these behaviours were not choice behaviours. When Superman's energy is low, he's the best big brother on the block and Ladybug's sun rises and sets on him. When his energy gets high he will be the first to tell you that he can't make good decisions. I think it's stressful for me? I'm sure it's nothing compared to what he has to deal with. Post meltdown comes the remorse. Body heaving cries. Self abuse. Nasty words about how awful he thinks he is and how sorry he is and he's so afraid Ladybug will hate him, or we will stop loving him.

I cannot even attempt to put into words the heartache that brings me. We reassure him over and over and over again that we understand. That we love him. That we're a family and we will all stick together and he's not in this alone. Ladybug covers him in kisses and wants to snuggle and just be with him.

But it's so much weight on such little shoulders. So off the Developmental Pediatricians office I trot (after he graciously fit me in for a 30 mins consult because we were in a crisis) and I sit across from him, I unload my concerns and he looks at me with that quiet knowledgable smile, eyes full of understanding, and I feel relieved. Should we try a new medicine? Are we at that point? I think back to when Superman is screaming on his bed that he wants me to just make it stop because the pitch a fits make his muscles hurt and his brain move to fast and he hates them when he has them. And I look at the man sitting across from me and I confidently say "yes."

It has come to a point where Superman needs me to step in to help his body. Language and love are not enough.

I leave with a little white slip of paper with a scrawl that is barely legible but I'm told that it holds a lot of promise. We'll start on the smallest amount possible and it should make him feel calm, but not drugged. It should cut back on the outburts and the aggressiveness, but most importantly it should help his brain slow down long enough for him to be able to decide how to act or react in a situation. That's a lot of promise in a little bottle.

I'm warned that the biggest side effect is weight gain because his appetite will increase greatly. That's okay I say. He eats healthy already and we'll arm ourselves with low cal, high fibre, high protein food choices. I'm lucky that my kids can sit with a bowl full of fresh baby spinach leaves and consider it a good time. Maybe because it's more fun when you get to share your snack with the rabbit? Possibly.

So Friday was the big day. We could star the medicine when I picked him up at lunch and I was anxious. I talked to Superman about it because I believe very strongly that it is HIS body and he should know what goes into it and why and be able to ask any questions. So we talked about what it does. I tried explaining that for some kids, their energy gets high....and cut in and said "and their body does things they don't want it to do." Yup. That sums it up. He's so incredibly self aware. So we talked about how the medicine is going to try and help his brain which would help his body and he felt good about it.

Dose #1 - 12pm on Friday. Went well. Great afternoon at school although he was weepy. That night he had three major meltdowns (2 centred around Ladybug) and went to sleep feeling sore and overemotional. Poor kid. I gave him dose #2 at bedtime.

Dose #3 - Saturday morning at 8am. huh.....he's really relaxed. He's calm. Holy crap! He's like an entirely different kid! I realized this afternoon that I went through an entire day without a single meltdown and he was so much calmer than he's been in months.

My biggest fear was that with these meltdowns would come injuries (which occured Thursday night when he fell and whacked his ear on a stool causing great amounts of swelling, bruising and bleeding from the top of his ear). I called my cousin (also a Dev Ped) and treated it with ice, he was fine but sore and when I told her about the new medicine we would be trying, she was happy. She's been waiting for us to get to that point because she's known for awhile we were headed in that direction. I feel good about taking the path that we've had. We've exhausted every option we had presented to us so we knew by the time we got to where we are, we were making the right decision.

So I am feel much more optimistic about the future as is my little man. Now we just have to work on the school side of things.

Dr. S (the Neuropsych I talked about ) met with the staff on Friday to interview them for her report. She's been a real champion in our corner. I think there are some good things head.

Love to all. xxoo

This is where we're at

I was putting off updating on what's been going with us because I was hoping I could post a really fabulous positive update but that doesn't look like it's going the case so I'm going to get it all out here.

* Superman started full time. This is a huge change for him so of course I was expecting him to struggle with it. It seems like they were shocked that it didn't go smoothly. Things fell apart on their end and when I picked him up for lunch he was bawling and screaming in the van that he hates change and he just wants it to stop.

* Then I was told by someone at the school not to worry because they don't re-evaluate if it's working until he's been full time for a week. Uhm what? That's not a lot of time for someone to adjust to a change they haven't faced daily in three YEARS. And if he's still struggling what the heck do we tell him?

* And because he's full time and he has to come home for lunch it's chaotic. Out of his 60 mins lunch, 30 mins of it is spent driving. So it's rushed and that doesn't help him at all. Since his lunch is 1-2pm that means Ladybug's nap is totally out the window. By the time we take him back to school, he have 45 mins before we have to go back to get him.

* Ladybug's fabulously frustrating 2 year old behaviour is setting off every single autistic trigger in Spencer. He's becoming aggressive with her and I hate hate hate how ashamed she gets when it happens. His whole team is on top of this but damnit, I want it to stop like yesterday.

* Since starting full time Superman cannot be left alone for a minute. His energy is so high that he can't think straight and that prevents him from making good decisions. One of the hallmarks of autism is that they don't have that little part in the brain that tells them they're in danger or that they could really hurt themselves or someone else. So Ladybug is never left alone with him and I'm constantly pulling him off the OUTSIDE of the banister (and our stairs open up all the way to basement, so if he falls, he goes down an entire storey).

* On day two, it was better. A more successful morning. But when I had to drop him off he tried climbing on the top of the van again. They were able to get him to the sidewalk so I could pull out and leave. When I picked him up he was on the sidewalk in the front of the school. He was fine to walk with me but the moment we got to the van he was climbing again. Can I say how lovely it is to keep pulling your kid off the top of the van when there's an entire parking lot full of parents staring at you?

* On day 3 he woke up so happy and relaxed. He was really regulated and I was thrilled because it was the sign of a good day to come. Then I heard that his favourite EA, Ms D was going to be out for 2 days. That means that he had to go part time. When he starts on Monday it will be like readjusting all over again.

* All of this is putting an incredible strain on my marriage. Now we know why 95% of marriages fail when there's an autistic child involved. Trying to find ways to effectively communicate in the midst of all of this is extremely difficult and that has been our downfall. But we're trying.

I'm just tired of fighting. Fighting to make sure things are together at the school. Fighting with my husband because we forgot how to communicate. Fighting with my son because I just want him to get over whatever it is that's setting him off. I'm tired of constantly having to be on edge. Always three steps ahead of him and in the meanwhile washing walls because Ladybug has fingerpainted with my favourite red lipstick (little bugger...that was Tuesday) or trying to get out the door in the morning with an autistic 8 year old who's trying to climb the banister when he should be getting his shoes on and once he does and I have about 30 seconds to get him into the van before he loses it again, my 2 year decides to do the "I'm a wet noodle" routine. I do not function well with this type of schedule on such little sleep.

We're *this* close...

Ms. B (the principal) called me today to talk about some programming changes for Superman. The Behavioural team observed on Friday and came back with some reccommendations that the school has put into place. One of them being that every hour Superman is given a sensory activity to do and they constantly change what it is so that he's stimulated and his sensory needs are met before he actually has such a strong craving for them. They also said that he really needs to be in school full time and that he's capable of it. So that is very encouraging.

Today the second EA (Ms. S) started her one on one time with him. Ms. D has him from 9-11am and Ms. S has him from 11am-1pm. It went very, very well! Ms. D check in on them several times which Superman really liked and he thoroughly enjoyed Ms. S. The great news is that we definitely have her until the end of the year so I feel like I can stop holding my breath. She really does enjoy the boys and Spencer took to her just as well as he did with Ms. D. So that is extremely encouraging!

So the new plan is that starting next week Superman will go full time. I will still pick him up at 1pm for lunch like I always do. Bring him home so he can eat, have some time to play outside and then bring him back when the lunch hour has ended and he'll complete the rest of the day.

For him, this is fabulous news. I think breaking up the day will be positive for him. For me, it's going to be chaos because Ladybug naps from 1:15-3:00pm and she really needs her nap. She's still so little. But with all the driving it just isn't going to happen. I pick him up at 1pm, get home 15 mins later and we have 30 mins to eat and play then it's back to school for 2pm. Get home at 2:15pm. Ladybug and I have 45 mins before it's time to drive back because I have to be at the school 15 mins before pick up time if I want to get a parking spot. So I'm not sure how we'll make it work with Ladybug but we don't really have much of a choice. She may end up getting catnaps here and there every time we're in the van.

Tomorrow afternoon is my meeting with J and then I'm off to Geneva for a course on sexuality and Adolescents with Autism. Busy day ahead!!

An interesting realization

Superman had another big meltdown last night and one again this morning. They seem to be centered around HB and I'm still trying to figure out why. It's interesting because Superman's expressive language is quite vast. But his receptive language is really deficient. So what that boils down to is he has a really big vocabulary and he uses it well (some days it feels nonstop) but when you speak to him he doesn't comprehend as much as you think he does. For instance, I can ramble on about something and he'll only pick out a few of the words and draw his own conclusion from them. Most times he's off base. He also needs anywhere between 30-60 seconds to hear what you've said, process it, forumulate a response/reaction, and then respond. If you keep interjecting and repeating and repeating, you through off his cycle and he has to start all over again. This is a point that I'm finding difficult to help other people understand. I usually hear comments about "well he's smarter than you think" or "he's trying to get away with things." etc. It's become a rather sore spot with me.

The other thing I've noticed is that when his medicine is almost empty (it's an anti-anxiety med in liquid form) he has real problems with his anxiety. So it occurred to me that the last bits left in the bottle are not full strength. As soon as he starts on his new bottle, he's great. I'm documenting this simply because I'll forget about that interesting little tidbit and it's good to look back on. Sure enough we're down to the last of his bottle and we've had two tough days.

J - Thanks for being so supportive. You know me well. I do kick myself for missing the cues. I know I'm human and I can only do so much, but I'm hard on myself that way.

A spooktacular Halloween and more updates...

Halloween ~ I think this has been the best year yet. It started off with carving a pumpkin after Ladybug woke up from her nap. This is the first time either of my kids has even touched a pumpkin before. I don't know why, but HB and I always think about it at the very last minute and have never gotten around to it. So needless to say, the kids were thrilled! Superman really got into the scooping out the guts part. Ladybug gave it a good shot but thought it was pretty yucky. From the pictures, it looked like a happy family affair. But if those pictures had sound you would have heard Ladybig screaming for a good portion of it. I finally figured out that what she REALLY wanted was the knife. SHE wanted to carve the pumpkin. Call my crazy but I'm not about to give a 2 year old a weapon. So she settled for helping to poke out the pieces once I had carved around them.

Dressing up was another adventure and a half. Ladybug was all flailing limbs because she didn't want to put her costume on, but the moment she saw herself in the mirror, she decided never to talk it off again. She was a faerie in all her pink girly glory. Absolutely adorable. Superman was a medieval knight. A very skinny one at that. The boy is all legs. For some reason, you dress him up as a knight and he looks so much taller. Go figure.

HB took them on a 2 hr trick or treating walk (or as Ladybug says "Shick or Sheet") which resulted in a ton of candy and two very chatty happy kids. Apparently Ladybug didn't stop talking for the whole walk. They decided to skip anything that had motion sensor robots that talk when you walk by them, and all spooky houses.

They went to bed 30 mins later than usual which resulted in one of the worst days ever by the time the sun rose the following day. I've discovered that Ladybug is not a child who can skimp on her sleep. She spent most of the day yelling, crying, or if we were lucky...both at the same time. Poor Superman would just walk in the room and she would unleash her overtired overemotional verbal screaming meltdown on him. Superman was incredibly tolerant until about 3:30pm and then he had a 2 hour meltdown. Listen, I tried every trick in the book to help him manage his energy. But when you had a screaming flailing 2 year old to the mix, nothing works. Eventually I ran Ladybug over to the neighbours and asked if they would keep her for 15 mins so I could deal with Superman. But that turned out even worse because he thought I have Ladybug to the neighbours TO KEEP! So we had to sort that one out.

After the dust had settled, Ladybug was back home and we settled down to watch a movie together I asked Superman why he thought his energy got so high. It was very simple and it all boiled down to two things.

1. Ladybug makes me feel like everything is all my fault and she screams if I just walk in the room (fair enough. That's not pleasant for anyone)

2. I'm bored. (ah ha! Superman has always been a kid where if he's bored, you lose him).

So today I made some purchases to add to the playroom. Battery-free, imagination powered, basic toys that he will love. Foam building blocks and a wooden toy city that he has to build. They can be used by either kid, or together and the wooden toys will last eons.

Looking back, I can see the missed cues where I could have headed things off. Once he got into the spiral though it had to run it's course. Thank goodness that moments like these are the exception, not the norm. I can't remember the last time he had one that huge and now I wonder how the heck I coped back when he used to have 6 or 7 a day. Just goes to proves how far we/he have come.

Today Superman was observed for 4 hours by the regional behaviour team at school. In the beginning his energy was a little high having two extra people hanging around him and Ms. D wherever they went, but he did quite well. It will be interesting to see what they report back. I was really happy to hear they were in.

Today has been a great day so far. Ladybug and Superman are both balanced and relaxed which is a nice change from yesterday.