The difference a year makes

When you enter summer as an autism parent, that's when you can really reflect on what a difference one year makes. The school year goes by and we just try to make it from week to week. Working full time, getting kids to activities, getting dinner on the table, meeting with school teams, and perhaps getting out to dinner on our own! The good thing about the school year is the ROUTINE! Summer is the time when we need to plan more, not less. This is the time when, although day camps are a form of structure, they are also a new form of structure with new people, new locations, and definitely new routines. And being home is total lack of structure, which can be managed in small amounts, but will become dreadful if not planned properly for in the long run. I've already been able to reflect on some of the progress we have made from last summer.

1. We sent Sweet Pea to camp for a day by herself the first week of camp. Last year, I wouldn't have even considered this. On the days that my support worker was not available last summer, I went to camp. I'm proud of Pea and generally happy with how it went. We had the support worker go day 1 and 1/2 of day 2. Day 3 was on her own, with the hope that the routine was in place and the people had gotten to know her. From Pea's perspective, I think it went ok, although I won't get much more than a sentence and very few responses if I ask questions. I won't get into details, but in retrospect it would have been best to have support every day for a 1/2 day. That will be what we try to put in place for the next camp. 

2. When she has said she does not want to go to soccer or baseball this year, we have pushed her to participate. Hell, somehow daddy got her to play baseball in the rain. I wasn't there but holy crap! Last  year, she couldn't have been pushed to even leave the house in a situation like that. We have signed her up for a variety of activities throughout the year for which she doesn't have a choice. To an outsider, that may sound odd (our son is 5 and he gets a choice). But if given a choice, Pea would say no. We hope that if we can just get her there, she will likely enjoy herself. We are trying to help her find her "thing", broaden her interests, and she is developing social skills in the meantime, avoiding the solitary confinement that is easier for her.

3. Pea can tolerate the word NO a little better. There may be a meltdown but we may be able to redirect her away from it somehow. Not always, but more than last summer.

4. There are no visual schedules posted up on the wall... Yet. She has demanded the iPad quite a bit more than I would like but all in all, so far so good. Last year we got the visuals out when things got rough. We took them on vacation at Christmas and used them for the first few days. We get them out when she seems not to be able to accept the lack of routine or process the order in which things happen (like the steps in the bathroom routine for example).

5. She has less teeth! Haha. Had to throw that in there.

Having said all this, August continues to be the hardest month of the year for us (April comes in at a close second). By the time we get through four weeks off in July, Pea is ready to go back to school. She's got ants in her pants, doesn't know what to do with her spare time, won't play games, won't play with toys, doesn't want to go outside, is done with soccer, done with baseball, done with her brother, bla bla bla. She resorts to weird car noises instead of speaking and animal actions instead of walking to the kitchen. It's almost like she knows when the clock strikes August. Her sleeping is a mess. She can't stop fidgeting, waking up with night terrors, waking up and very quietly sleep walking out of her room exactly one hour from the time she falls asleep (freaking the crap out of us), getting up at 4:45am (that was today)!! I'm not going to complain about the bathroom because that's at least going fairly well right now - although she Is requesting a lot of iPad time, which she only gets for a bathroom break or success there. Good? Bad? Whatever.

Three more weeks! Baaaaahhhhh! Then we get a new teacher, new classmates, a new routine, new meetings,... Yippee! Really, anything is better than August. I think...

What I've learned about our autism

1. When it's quiet, there is a strong likelihood that the walls will be covered with permanent marker or the child full of chocolate.

2. It's best not to mention a topic that you don't wish to pursue immediately. For example, "Maybe we'll go to the beach tomorrow". Child substitutes the word immediately for tomorrow and it's all yells, hoots and hollers from there....

3. No one understands this autism more than this mommy. This mommy knows how to predict the triggers and calm the meltdowns. This mommy knows what to avoid and how to prepare to leave the safety of this beautiful home we feel safe in. I once told my brother, "I'm her person" and that's the best way to describe it... Just like Meredith and Cristina (If you know me, you'll figure that out heheh). It's a lovely feeling to be someone's person. 

4. It's so important that everyone is on board - family, friends, teachers, babysitters, neighbours, secretaries, educational assistants, playmates, playmates' parents, business owners, camp directors and supervisors, swimming instructors, baseball coaches, soccer coaches, and the list goes on.  We have had so many more positive experiences than not and are so very grateful when we find people who help us. But believe me, it's really hard to forget the few times that my special needs request has been met with sneers or dismissed as if it didn't matter. It matters.

5. It may look to others that we are giving in. It may look like poor parenting. Well guess what. We're always doing our best and have pea's best interest in mind at all times. It's very likely that we are avoiding a meltdown or trying to alleviate some stress from her day which can come in many forms and be expressed in many forms. No one wants their child to feel anxiety and this is real to her. And the rest of her family.

6. When you have worked tirelessly for weeks or months to stop your child from barking like a dog at inappropriate times and places, guess what? She will then start sticking her tongue out and clapping furiously at random times. You just deal with that one, move on to the next, and keep your eyes on the prize... Appropriate social behaviour. And guess what? This cycle will continue. But it will get easier because you will prepare yourself each time that there will be something else coming.

7. We celebrate and get excited about the simplest accomplishments. She asked to use the washroom when I dropped her off at a crafting activity by herself for an hour and a half. The teenage supervisor kind of complained. I was thinking to myself that's f---inn fantastic! She got on the roller coaster and sat with a friend and not me! She got off the iPad when the timer went off. These are major deals for us. It gives my husband and I something to really feel proud about and reminds us to celebrate our persistence. 

8. I have a lot more patience than I ever could have imagined.

9. There is always something new to learn.

10. I fall in love with people who stop and listen to my daughter and really show an interest in what she is saying. Really. I could marry those people.

11. I have been surrounding myself with amazing friends for years to prepare myself for this diagnosis. I have the most thoughtful and non-judgemental circle of diverse friends that I am forever grateful for. 

12. It's a lot of work to find babysitter. So when we find someone who is patient, caring and who will follow what may seem to be silly and odd requests, we pay well.

13. I have learned to take snacks and water everywhere I go. Even if the plan is only a ten minute drive. 

14. The iPad is both the friend and the foe; the friend when I need a break or the customer needs a washroom break, the foe when we have to leave to get going somewhere and the game has not been completed to the end or to the satisfaction of the customer. 

15. Timelines, to a child with autism, mean nothing. There is no rushing this child, no "who can get their shoes on first" and no sense of urgency for being late to arrive to something. Unless of course you want to argue, be yelled at or hear the siren.

16. I only take one child or none child out for groceries or shopping or haircuts or whatever. Much better for my sanity. I was chatting with a school parent the other day about how we have seasons passes to an amusement park. She takes her three girls under the age of 9 on her own and was telling me "you could do it! With only two?! So easy!" she says.  She means well, but hell no lady! Not gonna happen, especially with such a long walk to the parking lot.

17. I've learned that I need time for myself by myself, for each of my kids individually, and for my husband outside of the house. These are things I actively schedule into our lives.

18. I have to plan ahead. I need to know days or weeks in advance for play dates, excursions, family visits, whatever. It doesn't matter who you are or what you want to do. Just believe me. It makes life in autism world much easier in the short term and the long run.

19. No matter how old the child gets she still needs the scheduled sensory breaks and will still have full on three year old meltdowns in public. Whatev! Get over it!

20. The best $250 I spent this year was for autism. An above ground 15 foot swimming pool. Sensory satisfaction. Preferred activity. Good for co-ordination, timing breaths, body awareness, building co-operation skills, eases opportunities for social skills with peers, enhances creativity... Find what works and spend the money. My husband would disagree, which in some ways is understandable. I've spent many dollars on many toys and none have lasted longer than a few weeks. This pool works. Too bad summer doesn't last very long in Canada!

21. And just to add one more so we don't end at 20... (Even though there are 5000 more) No joking man! Joking around, being sarcastic, teasing, especially when she's crying or stressed. Ugh.... Beam me up Scotty. She just doesn't understand it. She may be able to take it from someone she knows well because she is familiar with their particular tone or facial expressions, but from someone else, nope! The teasing especially.

The end!

Capital NT. Figure that acronym out!

The early weeks and months of sleep deserve their very own post which I have slowly been working on. Sleep was definitely one of the red flags for me that something was up. Right back to the day my baby girl was born. But here and now, the current focus of sleep issues are Night Terrors. With a capital NT.

I can't really remember when the night terrors began. I think they began around the age of two. The reason I say that is because I had a newborn then too and I remember making sure that hubby was on duty for the night terrors so I could get some sleep when baby boy was sleeping. Back then, they were not as frequent. Maybe a few times a week. She would stay in her bed and scream and then one of us would go to her and lay with her until she fell back asleep which back then was about a half hour I think. She was easier to rouse from the depths of zombie land back then too. She would stay in her bed and it would usually happen sometime before midnight. 

The terrors became more frequent around the beginning of JK. Since that time there is rarely a night that goes by that does not include one. She goes to bed around 8:00 and they pretty consistently happen shortly after 9:00 now. More recently she has started to get out of her bed. Just now I heard her screaming for me and I went in and she was out of bed by her window. This time I didn't even hear her feet hit the floor and all I'm doing is buying some wag jags while I'm on my iPad. Very quiet! It reminded me to finish up this post that I've been working on for a few weeks. We just got off a three night hiatus from the terrors which is a bloody miraculous thing around here! So we celebrated with ... A smile, a couple of deep breaths and a feeling of relaxation and accomplishment. Even though there was not one single thing that either of us did differently to achieve those terror-less nights.

So! I've done my best to keep track of an entire week of sleep patterns. Each night, bed time was 7:30-8:00 and we had our regular daily routine of school during the week and various things over the weekend. I've never figured out why there are night terrors. They don't seem to correlate to anything in particular; food, overstimulation, understimulation, TV time, school, weekend, whatever. I don't really expect to figure it out. I guess that's why the puzzle piece is the symbol for autism.

Tue Oct 14

9:05pm

- screaming for mommy

- found her walking around her room yelling, "No! I don't want to go!"

- inconsolable and never wakes up while walking around

- held her hand and take her into our bedroom to see daddy and she walked right back out

- fidgety and can't stop moving in bed for 10 minutes before falling back asleep

Wed Oct 15

9:10pm

- fairly simple, easy going night terror (as night terrors go around here)

- woke up yelling for mommy

- took five or so minutes to settle and I laid down with her for about 5 minutes

Thu Oct 16

5:30am

- she got up, went pee (new rule before coming into our bed to try to potty train her at night)

- came into our bed and fell back asleep fairly easily

9:12pm

- screaming for mommy

- yelling "No!"

- seemed to come out of her daze a bit when I started talking about how much I like her new jammies

- went back to sleep quickly (5 minutes) with very little fidgeting

Fri Oct 17

3:00am

- in our bed, slept fairly still through the night

No Night Terror! But...

11:00pm

- daddy thought it was a good idea to try going without a pull-up for some bizarre reason (even though she has never had a dry pull up before) and didn't tell me this was happening

- she came to our bed and wanted in

- noticed she was wet and she wasn't wearing a pull up, daddy fessed up

- then came the screaming... Siren. I had to help her change her soaking wet pajamas and get her cleaned up and in new ones--with pull-up

- siren... Her blankie has pee on it. She can't sleep without her blankie. It's not a typical blankie crush. It's a real life first class emergency can't live without the unbearable pain if the blankie is not in my grip kinda crush

- I find myself washing the blankie in the sink with dishsoap by hand. Gross

- I find myself emptying the dryer of clean clothes and laying in bed waiting for the blankie to dry, yes she's still awake... Can't sleep without blankie!

12:30am

- I've got the blankie, kid in my bed ready to sleep now... me wide awake from the drama

- start to fall asleep around 1:20am

1:30am

- the boy comes in and wants to sleep in our bed

- so! (Said with a sigh...) we all cram in together and just do it. No sleep for me. Not sure about Jamie. Kids seem to survive and sleep like "babies"

Wow. That was a long night.

Sat Oct 18

9:10pm

- mommy and daddy just starting to try to watch a movie, I hear two feet hit the floor just seconds after the first yell, I hit the floor running

- she is out of her bed in the middle of her room wandering around

- same routine, disoriented, out of touch with the present world and reality, wants to hug me, doesn't want to hug me, wants up, doesn't want up, all the while ringing the siren

- eventually calm her down about ten minutes later and get back to he movie (the latest xmen instalment...awesome btw!)

Sun Oct 19

- it's Monday now so I can't remember ... I know. It was only last night. But they all blend. Night terrors more often than no night terrors...

- oh yeah! Now I remember!  

3:00am

- I wake up, can't sleep, start reading on iBooks

3:15am

- boy comes in, climbs over me, lays down and wants to chat, wants me to turn off iPad and roll over to face him

- I oblige because I love the damn kid

- he tells me a few things in his sleep like that I have black all over my face (so he says) and "why is that?" He doesn't wait for an answer because he is sleeping!

- just about asleep...

4:00am

- girl comes in, climbs over me, is forced to sleep beside her brother, they are both kickers and boy still talking in his sleep here and there

4:30am

- I decide this is bullshit and I'm sleeping in her super comfy bed if no one else will!

- I go in and try to get to sleep before my stupid alarm goes off at 5:45am

So THAT'S why I can't remember what happened last night!

Mon Oct 20

9:10pm

- awake with the siren cry

- she has no idea where she is and is yelling for mommy but can't comprehend that I am right there in front of her talking and looking in her eyes

- turn on all the lights, try to hug, wants one, doesn't want one

- points to the curtains, I tell her, "it's a curtain, nothing is there"

- points to the bed, I tell her, "it's her blanket, nothing is there"

- stands up on bed, sits down, stands up again, sits down again, completely disoriented and not present in this world (hey maybe she's a time traveller. Just joking!) 

- screaming the siren, she finally pushes her way out of the bed and I encourage her to walk into my bedroom where the light is on and things are normal

- she leaves my bedroom and I encourage her to walk to the kitchen (last time she walked to the fridge, touched it and seemed to come out of this trance)

- she wants up, she wants down, she wants up, she is heavy, she weighs 44 lbs, ouch

- seems to be coming out of it and we head back to her bedroom, the siren is done, can't believe her brother did not wake up, can't believe the neighbours did not wake up

- I lay down with her for about ten minutes where she is fidgety and wants me closeby touching her in some way but she's hot and shakes off the blankets

- finally gets to sleep with blankie in hand, we will never get rid of that thing and if we did I'm not sure how she would cope with panic and her need for the soft ribbon between her fingers (which she rubs in her sleep)

Sleep. One of the popular challenges for kids with ASD.