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!
