It's All Okay

Just a mom blogging about life with an autistic child.

Location: Canada

I'm a stay at home mom with two boys. Patrick is my youngest and has ASD.

Thursday, August 31, 2006

A busy day

We've been stuck in the house too much this week. Definate cabin fever. So today we went all out.

We started at the library...except the library was closed. *sigh* Patrick does not like a change in plans but he compensated well. So we went to the park. The kids had a blast and amazingly enough we met the one little girl from his preschool class who will be in his kindy class this year. They had a great time although Patrick didn't really play with her has much as around her. Nobody got hurt though and that's a successful outing for us.

I decided we deserved a treat so we went to Subway for lunch. Patrick ordered a turkey sandwich. We were at the right mall so we decided to get the weekly groceries done too. The boys were great. Patrick even had a conversation with the cashier. Not sure if she understood it but he certainly did. You could see the pride on his face.

We almost went shoe shopping for school next week but decided not to press our luck. He's a bit wound up now that we're home but nothing too bad. I'm going to put Raffi on while we make supper.

"Baby Beluuuuuga, oh baaby Beluuuuga".

Friday, August 25, 2006

A bit overwhealmed

A whole bunch of things came to a head today and I'm feeling a bit unprepared. Some funding stuff I have to figure out, a neurologist appointment for Patrick which always makes me nervous, a party coming up for which I have to clean the whole house and prepare all the food for. You get the idea.

Nothing's really that big of a deal in and of itself. But for some reason my brain feels like it has cotton stuffed in it and I'm having trouble concentrating. I dunno, I'm probably just tired a a bit worn down. Needless to say everything will work itself out and by next week my stress level will have returned to normal.

Patrick had a tantrum leaving the pool yesterday and I was HAPPY about it. Yes, you heard me correctly. Because he knew lessons were over. He got the concept. While I was dragging his poor miserable soul to the truck I was grinning inside. He understood. Yay for us! It also made me remember the first time that Patrick cried because we said something to him he didn't like. We hurt his feelings. It's hard to watch them get upset but my hubby and I were so happy that he had feelings to hurt kwim? Progress is amazing to watch.

Thursday, August 24, 2006

He's gonna be MAD

Last day of swim lessons. Might as well be the end of the earth. Patrick is going to be so upset. I've been trying to explain to him that lessons are all done and we'll be saying bye to A(his instructor) but he really doesn't understand past or future tenses. So I'm pretty sure it's not sinking in. He might realize after we're leaving the pool today or he might not realize it until tomorrow when we don't go to lessons as usual.

This is a big frustration around here. Well meaning people are always asking me "did you talk about it a lot?". It could be the start of school, end of lessons, whatever it may be. But that strategy never works with Patrick.

An example. We were planning to take a train ride with my grandmother. She asked Patrick if he'd like to do that sometime. Patrick said yes and went and put his sandals on. As in to go to the train right now. And everytime we 'discussed' it he thought we were going right then. He wasn't trying to get us to go early or anything he actually thought that's what we meant.

The one thing that kinda works is a white board. Patrick can't read (he's 4) but I use written words anyway. It works for a day but not something that is any further away than that. I write numbers down the side and words like breakfast, to the truck, visit gramma etc. When each item is done Patrick gets to erase it. We look at it throughout the day on the days when we use it. It helps for things like waiting till after supper to do something.

Anyone know how I can develop his sense of past and future? When he does relay something from the past (this is new for him) he speaks in the present tense. Like "bring my bear to school" means that at some point last year he BROUGHT his bear with him to preschool. And he means it in past tense but can't seem to say it that way. So far all I do is make a conversation out of it and use the proper words myself and sometimes get him to repeat it. His speech therapist will help us with this I think eventually.

Sorry about the rambling today. I just followed whatever thoughts were in my head.

Tuesday, August 22, 2006

Patrick at age 2

What I remember most about Patrick's second year of life is that he had absolutely no eye contact and you had to have a hand around his wrist ALL THE TIME.

I'm sure other parents thought I was insane. Their children could play within the confines of a park, backyard or laneway. Mine could not. You couldn't put him down next to a vehicle after getting him out of his seat unless you had a hand on him. Patrick was a runner. He was also a climber. You couldn't leave the room even to answer the phone. He would end up on top of the entertainment unit ready to jump off.

I have video from his second christmas and in the background you can hear me yelling "look here Patrick, look at mummy". He didn't.

Even at three he didn't answer "Hi Patrick" nor could he even show you how many 'fingers old' he was. He didn't know that other children could be hurt by him. He was your typical 'bull in a china shop'. He was pretty destructive and even now I have no lamps in my living room, no curtains on the windows and no pretty figurines or other collectables.

Patrick walked early (9mos), learned his vocabulary quickly, and toilet trained on time. I don't think we were in denial. As early as 6 months old we knew he was "different". But we were ok with that. We just did what we had to because he was Patrick and needed different accomodations than other children. Because I didn't realize the difference between having vocabulary and using words in a meaningful way we never even suspected autism. We did think in passing that because of his energy and impusivity that he might have adhd or something similar but decided not to persue it. I wish we had. It would have made life easier for him.

We kept visits short because he would become wild when out of his home environement for too long. We didn't use a babysitter because we knew he would be too much. We dealt with his sleeplessness, we used stollers when we could to keep him safe, and we traded off duties with each other to keep ourselves sane. He was a violent nurser (laughing in retrospect) and bit me often. He didn't cry a lot but was often frustrated and didn't get when you were trying to tell him. He missed a lot of concepts that other children grasped easily. He slept very little.

Patrick started having seizures when he turned 3 yrs old. Shortly after this our pediatrician suggested we refer him for a psychological asessment. She was very honest with me and even used the word autism in that discussion. By Christmas his third year I had done enough reading to know he was autistic. He didn't get his official diagnosis until June this year because of the long waiting lists.

I have to say that age 2-3 was the worst for me. We tried to cope with his 'differentness' with humour but it was a very depressing time for me. I was worn out and completely exhausted. And of course I had no outside support. That would have made a big difference. I think we need to change the mindset that no services are available (here anyway) until you have a diagnosis. All I wanted (and I cried out loud about his many times) was for someone to tell me when he did behaviour A to do B in order to get result C. Nobody would help me.

I thank God for my husband every day because of all the help and support he gave me when I was in the depths of despair. Without him I'm not sure I would have come out the other side. But (in order to balance the gloom of this story) we did come out the other side in fine shape.

Patrick is still autistic (of course). And he's still the biggest challenge I've ever faced. But he's getting Speech and Occupational Therapy. I have a social worker to talk to. He'll have an aid he so desperately needs when he starts Jr. Kindy this fall. Things are falling into place. We're a very happy family and he is a delightful little boy.

He is my joy!

Monday, August 21, 2006

He's doing great and getting big

We're having a great time at swim lessons. I'm really proud of Patrick. I did realize today that he's getting big. If I have to be in the pool with him next year I'm really gonna get some interesting looks from other parents. I try not to let it bother me but admittedly sometimes it does.

Today i had a chance to chat with annother mom and told her about his Autism diagnosis. it felt good to say it out loud so that she understood that I wasn't just a crazy mom who had to go in the pool with her kid. I was glad I was in there today when Patrick left his instructor and jumped in the deep end. Now he did manage to come up to the surface himself but I was still glad I was there to guide him back.

So I'm entering a new phase. I can feel it. Up till now the fact that he was "only 3" or "only 4" has been enough to stop people from questioning his unique needs. But I can see now that soon we'll need to give more explanations because it will become even more obvious how different he is.

It's great to have so many blogs from parents whose children are in this next age bracket. It really helps to read how you all manage certain situations. Thanks to all of you.

Thursday, August 17, 2006

Swim Lessons-three days in

Patrick swims like a fish. Matthew sinks like a rock.

They're both doing well though and having a good time. I'm in the pool with Patrick but that's working out ok. The teacher takes him for his "turn" and then when a typical child would be hanging out on the steps waiting Patrick is being chased by me. He's seriously swimming whenever he can get away from us even though he's in the first level and is only supposed to be floating etc. He might even be learning not to drown himself. Which of course was the whole idea.

I almost didn't sign them up because honestly I dreaded having to go in the pool every day with Patrick and also having to deal with them each waiting for their lesson since they're not at the same time. But so far things are cool.

Friday, August 11, 2006

various ramblings

Patrick and I are home alone today. His older brother is away with family for the weekend. I won't go into how sad it can be for me that they easily take his brother and don't ask for him. I KNOW in my brain that he's hearder to take care of, that it isn't a visit as much as babysitting etc but in my heart it still stings a bit.

I love being home alone with Patrick. We talk so much and he's so loving with me. Tonight it'll be just him, daddy and myself and that will be nice to. I want to do something nice with him....maybe rent a movie or go to the park?

I'm so anxious about kindergarten. I'm sure I've blogged about this before. He has to share an aid and I just don't think that's good. But with budget constraints I can't see them ever giving in and finding his own teacher's aid. I want him to go back to preschool and we're on the waiting list for that. He qualified at the end of last year for an integrated support person but they're only in preschool. It's also only 12 kids instead of 22-24. *sigh* Hubby keeps telling me it'll all work out no matter what happens and to have faith in Patrick but man it's hard. We also disagree on if it's worth it to pay for preschool annother year (three mornings or afternoons a week) when kindy is available and it's free. I see lots more discussions on this topic in my future.

Tuesday, August 08, 2006

I left on thursday night for a 4 day camping trip sans children. I was so worried about how they would cope. I knew my husband(and my NT son) would be fine but I wasn't sure about Patrick. It occured to me that he didn't understand I was coming back. We don't have attachement issues luckily but still, getting up in the morning 4 nights in a row and not finding mom there could be disasterous couldn't it? I was afraid he just wouldn't be able to wrap his brain around the whole concept. Past and future are foreign to him...he lives blissfully in the present.

Well anyway, they were fine. I had an amazing 4 days although it was a bit surreal. I mean, not having to keep track of him every waking (and some sleeping) moment? It was great and I feel wonderful.

Even more amazing was the feeling I got when I first saw him upon my return. I was so happy to see him. The emotion at that moment was a bit overwhelming as I gazed into his beautiful amber eyes. I truly missed being his 24/7 caregiver. I am glad to be home where I belong.

Tuesday, August 01, 2006


I ended up taking Patrick to the emergency room at our small local hospital yesterday. He hadn't eaten since the previous evening and was vomiting up water all day. I can't for the life of me figure out how he got dehydrated. He normally drinks lots of water and we try and make sure he doesn't get too much mid-day sun. In the end they couldn't know for sure if he had a virus or sun/heat stroke.

He's fine, they kept him for observation and hydration for a few hours but then they sent us home with warning signs to watch for. They were so good to him and he responded well to them. I wasn't sure when we checked in if I should mention autism (I'm new at this and never know if I should say or not). I did decide to tell them and also warned them that he had vomited up his seizure meds at least twice.

When we left I mentioned to the doc that I felt kinda silly in retrospect bringing him in since I could have just watched him closely myself (I couldn't get a hold of my ped and there aren't any clinics out here). He said NO, I was right to bring him in and he would have brought his child in if he was having the same symptoms. The biggest worry was that he was lathargic and that always scares me.