First of all, I have to say that I’m so sorry to those who were at Bellevue Botanical Gardens this morning. My heavens, what a morning. What a ruckus my children and I caused. Mostly me. I don’t know why, but I had little patience for dealing with my children this morning. I apologize. I don’t know why I had reached my limit much earlier in the day than I am used to. Good……ness! I am still trying to comprehend what went wrong and when. How do I make it so that next time is better? Because, yes indeed, I will encounter if not the same experience again, it will either be similar in intensity or more difficult. E has been screaming and extremely clingy. O has been the same, but louder and more difficult to understand. Mostly, I think that it was my expectation of the morning to go well that was the problem. I was so looking forward to let the kids run around on the big lawn there and get some gardening inspiration at the same time. When we got there I realized that we only had the single stroller, not the double. I was wrong in assuming that wasn’t going to be an issue. I managed to make things smooth and got both of them into the single stroller and tried to make it a fun game. It went okay until we decided that we wanted to get out and run around. I couldn’t push the stroller on the grass. The garden nazi in me wouldn’t permit it. I think that I need to start getting over my rules and permissions. The Catholic girl in me won’t allow it. The Japanese girl in me is ashamed just thinking about it. What a conundrum. So, because I just couldn’t get over myself, I made the kids get out of the stroller to run around. When raising Julian when he was this age, he agreed to these kind of things. There were things that just were…that was just the way it was and he dealt with it. Sometimes things were disappointing, but the Positive Discipline way of discipline and parenting style worked for him, and for me. If I try that now it just completely backfires. I could ask J, “would you like sausage or bacon for breakfast?” He would always choose one of the two or three choices provided. O always has said, “I don’t want sausage, bacon, or any breakfast meat for breakfast. I only want homemade waffles with mini chocolate chips.” There is no room for error or interpretation in that equation. I have tried to play it up, joke around, switch things around, and I always end up making the homemade waffles with mini chocolate chips. Almost had a panic attack the other day when I thought that we only had regular chocolate chips, not mini chocolate chips! Of course, this is just a metaphor for every single daily interaction that occurs in O’s world. And, in case you didn’t know, Oliver lives in O’s world and we are all just mere pawns in that world. So, back to the BBG. I ended up leaving the place with two screaming, flailing children and myself in tears. Bugger. That is so not what I wanted! In the future, do I just go into an adventure assuming the worst? That goes against my personality for always expecting and hoping for the best. AND, doing whatever possible to make that situation the best that it can be. Do I just need to be more flexible? Yes, there is some truth in that. I do need to be more flexible.
I signed up for the Autism Speaks walk today. If you want join, please walk with me. It is Saturday, October 3rd. Here is the link:
http://www.walknowforautism.org/faf/home/default.asp?ievent=304949
I registered under Team Ollie. More than anything I would just most appreciate your well wishes, but if you are wanted to join in presence, please join us, if you would like to join by sponsorship, that would be so much appreciated as well.
I don’t know about you, but I was the best parent EVER, before I became a parent. As a single mom, it was a bit more difficult probably than most, but Julian was easier to raise thru the earlier years. (who knows what will come next:)) Now I can only imagine that when people look at me as I am trying to corral my little ones that they must be appalled. But, that is okay. They don’t know. They will never know. I was naive to think that way before. I guess that life is just like that. It all seems so easy until you get there. It sure is far more exciting and rewarding than I had ever anticipated though. If there is one thing that I always resort to when I am struggling with who I am as a parent, I always wonder WHY this dear soul chose ME as their MOM. There is something about me that they need. There is something about them that I need. I held each of my kids so tight today after today’s fiasco. We may never be allowed back to Bellevue Botanical Gardens, but we for sure learned something about each other that we didn’t know before. That is how it works, right…I definitely think so.
Thanks for your caring and sharing message today. I enjoyed reading your blog. I can tell already that you are well on your way to doing everything possible to make his life and your entire family’s life the best that it can be. Being able to share about it and networking, and keeping your sense of humor (after you get through the battleground some days) are going to get you far. You are the mama bear, who will advocate and educate. My experience dealing with Prader-Willi Syndrome and mild Asperger’s kids of my own has helped me in so many ways, both professionally and personally. I am in a personal health crisis right now, but facing it calmly and without stress and drama. Denial helps nothing. Having a general overview and dealing with the next steps, incrementally is a good approach. Don’t bury your head in the sand, but don’t look too far ahead and get overwhelmed. Use and appreciate your support network, the family and friends who are there for you. They will be invaluable. Sounds like your new neighborhood puts you perfectly in place for View Ridge’s program. Terri Skjei (principal) was amazing for us (at her previous school) when my son with PWS was at his point. Along your journey you will encounter some of the most amazing parents (Barb!) and professionals. I’m sure you will soon rank amongst them yourself, in this new area of your life : )
–Susan
Oops! Missed a word in the second to last sentence of my previous comment. Was looking for the right word and put nothing where I said was at his ____ point. I guess there are about 3 good words I could insert there– lowest, toughest, crisis.
Hey, don’t worry about the Catholic thing…I don’t!!
I’d love to walk with you on the 3rd and will sign up for it NOW. Thanks for letting us know.
Your experience at BBG sounds frightening, but you are right, other people don’t KNOW and goodness knows, you are doing your best, your wonderful best.
Karen, your blog is incredible — you are incredible! Thank you so much for sharing your journey, you are a great mom and a wonderful person. I laughed (with tears in my eyes) when I read about your outing to the BBG. And the waffles, especially the waffles. Parenting was so much easier before we had kids (but it is so much more rewarding now)!
-Michele
Karen,
You are an amazing mother and friend. Even if they don’t like to admit it, every parent has to struggle with challenging times. Take heart and never worry about what others may or may not be thinking about you and your children. They do not live in your world. And just think, they may be looking at you and be appreciative of the fact that you are the type of mother that would rather spend time with her children in a beautiful place (even w/ some difficulties) then just put them in front of the TV because that is the easy thing to do. We never know day to day what life is going to bring us – I guess we just need to get used to the roller coaster ride!
I have been there so many times, Karen. Toting a baby around only makes things so much more interesting, doesn’t it? These special kids will keep us on our toes. But, every day I’m touched by something positive (even though it can be very, very hard to identify sometimes!) and please remember that things will get…maybe not exactly easier, but different. Something completely annoying you think you can’t stand for one more minute will amazingly stop…and be replaced by some other challenge, but you’re grateful it’s not that same one anymore. I admire you so much for being so open and honest about Oliver’s diagnosis — I wish I had been more so, I’m sure I would have more, and different support from friends and family. Keep writing, you’re great at it. I’d like to know who your new doctor is sometime. I’m here anytime. Sara