Starting school

Pea has been super excited to go back to school; ready since the beginning of August in fact. The week leading up she started getting out of bed again in the night, and hasn't done that for months. I took her in for a school visit on the Wednesday prior (after some rearranging on my part of the time I had previously set with the head honcho). We were able to semi-confirm who the teacher would be and see the playground. We were unable to see the classroom (honcho didn't have a key?), unable find out who is in her class (confidentiality), unable to speak with or meet the classroom teacher, resource teacher, or EA (not in the building), unable to share information about Pea to the people involved with her. Kinda (very) disappointing, as I had rearranged my work schedule and daycare at the last minute to accommodate the change in time.

Take Two: After expressing that we wouldn't feel comfortable having her start school until we had a chance to chat with the teacher (at least), hubby took some time off work Friday to go in a second time. Very good impression of the teacher, who let Pea pick her coat hook, pick who she'd like to sit beside in class, listened to our concerns, read the letter we wrote about the attributes of our Sweet Pea, read the goals we had for the year (given to the SERT), and then followed up with an email. She even wanted to set a date for a meeting the first week of school. Sweet! We're rollin'...

Day 1: Pea is super excited to go to school. Slept well. Woke up excited and wanted to do every household job she could (feed the dog, set the table, etc.). This is a form of her getting out her pent up excitement. Easy to transition. Turned off the tv with little to no countdown, dressed, out the door and in car seat before daddy could snap his fingers. The day goes by. She comes home with a big smile. And all appears to go well at school until we ask her who is in her class. "I know two people mommy," and holds up two fingers. She names them and I respond by saying she must know more than that! Cripes, there are five kids alone on our street in the same grade! "Nope." After a little digging (with a child who doesn't have a penchant for the spoken language), we find out that none of the five other kids on our street are in her class. 

We let that information sit in our brains while we went about the nightly after school stuff; toilet, reward for successful day (wii time), snack, swimming lessons, dinner, teeth, books, bed). Then mommy and daddy came to joint epiphanies at the same time. Wtf? There is not one kid on our street in her class? These are the families we chill with on weekends. These are the kids who have been over and swam in our pool this summer. These are the kids hubby coached soccer with the sole purpose of maintaining those social connections. These are the kids we see at the bus stop and playing on the street while we're out walking. These are the families who are getting to know our daughter's needs. These are the parents we trust and know. These are the homes we might consider having Pea over for a play date on her own. These are the kids we have been establishing relationships with for five years. These are the kids who will keep an eye out for Pea when she gets older.

So what is this? Mommy and daddy have a very thoughtful adult-like conversation and discussion about what this is. Some words like inclusiveness and segregation and isolation come up. We just came off a bad year of school in our opinion. No gains in social skills. I'll leave it at that, but bothersome enough that I called the closest private school in January to see what they had to offer. I did my research and was very seriously considering pulling Pea. Could we afford it? Absolutely not. Must we afford it? Absolutely! If that is what Pea needs. We both grew up in the public school system. Maybe we were over reacting (?) Maybe it would get better (?) Bla bla bla. Nope. By June, we agreed. If we have another year like this, we will not be waiting for another ten months to go by. 

We have worked very hard to build the relationships within our community. And it is an awesome and amazing group of people whom we trust and are grateful for because of their interest in understanding our Sweet Pea. You see, Pea needs an extraordinary amount of time to learn and build social skills with peers. And needs help to do so. We need access to every single minute possible for her to do that. Especially with an adult around. In this situation, she gets none of that with our neighbours out of our public school system. Sure, there's recess someone might say. Pea is not going to go out of her way to find those kids and make conversation. It's not natural for her. And there is no adult at recess who has time to guide and support the conversations she may have. So here we are, with a teacher who is proactive and gung-ho, but with a child who has special needs without the group of families we will rely on to look out for her. There are weekends for play dates someone might say. We struggle with play dates for lots of reasons. And what about birthday parties? We all know how that goes. Kids will invite who happens to be in their class. Our fear? She will be excluded.

Our neighbours are going to become strangers. 

In goes Hubby to see head honcho. We have discussed what we would like to say, what we will say, and what we need to leave out. If I had to compare, he is possibly more bothered by this than I am (although I guess I am the one up at 3:30am writing this). He will definitely do a better job having this conversation than I will because I tend to hold back some of what I really want to say and then become emotionally frustrated which may come out as anger, disgust, or contempt. Which it is, don't get me wrong. But that does not lend itself to fruitful conversation with head honcho. Hubby's a man. Honcho is a man. Men expect men to be straight forward, honest, and say what they're gonna say no holds barred. 

Three weeks later...

There will be a shuffle in classes as a result of oversized classes. We can move Pea to the other split class! Ugh. Second thoughts. Teacher is super duper communicator. Teacher is teaching social skills and organization and persistence without having even met us to discuss those are things we need in Pea's program. Familiar EA is in classroom for support for much of the day. Pea has had a very smooth transition as opposed to her other Septembers in our home. If we switch, who is going to guarantee all those same things to ensure there are gains during this important year? Will there be enough support for Pea without the EA? How long will it take for Pea to adjust and for the new teacher to get to know her? Will she stand out in a class with older kids because of her lagging social and play skills? Will she be happy? Will she be happy.

Call the teacher. How much EA support does she need? Some for focus and attention, extra set of eyes and ears for interactions with peers. Great to have input from EA who has worked with her for three years, knows how far to push and when she needs a break. How do you feel she's doing? Chatty, happy, and taking leadership roles with younger kids (teacher shared examples that blew me away and of course made me tear up with joy AND relief). Saaaaayyy whaaaaaaat?! Shit. That makes this decision much harder but much easier. My gut says ... Stay where you are.

Get home. Discuss with hubby. Both of us are torn apart. These decisions are huge for us. They can make or break our progress. Call the EA at home (yes, I feel I have that relationship with her and she did give me her number last year). How do you feel she is doing? Shared some stories, understands why it's difficult for us, loves how this teacher treats and teaches each child as an individual, reminds us that Pea is happy. 

Pea is happy. Decision made. If Pea is happy, our household is happy. When Pea is not happy, this house is a disaster.

Done. She stays. I can breathe. Take her to before school care the next day and our neighbour's kid is there. Pea walks right by her and heads straight to the Lego. Neither greets the other. I think to myself... Maybe being in the same class would not change this scenario at all. They have their group that plays at recess and Pea is not part of that; wasn't last year either when they were in the same class (no ill feelings there at all btw). Pea will fit in where she fits in. We'll never know if this is the right decision or not. But it's been made and we're rolling with it. There will always be "what ifs" for us when it comes to these things. Hell, we question ourselves fifty times a day. In the end, we keep Pea in her routine, make our lives easier in the short term (happy kid= happy family) and add more effort in other places (structured play dates with mommy/daddy coaching and extracurricular). Phew. Glad this week is over! On to the next!

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!