Ever read that inspirational letter to special needs parents called "WELCOME TO HOLLAND" by Emily Perl Kingsley? If you haven't, you might want to go Google that. It's kind of required reading for our lot. Go on. I'll wait. Then come back to this blog. :-)
Hey, the message is nice. I get what it's about. I appreciate our Little Holland in New Jersey all the freaking time. I've said it before in my blog. Autism is a trip I didn't plan on but I sure do love my tour guide. Acceptance of my travel destination came in stages. I'd be lying if I said I was there completely. I'm not. Some days I am completely submerged in our Autismland and down with the natives. Other days, I am wandering around like a tourist in culture shock so busy studying my map and travel guide that I completely forget to stop and actually enjoy the scenery around me. I've accepted the fact that I'll probably be like this for the rest of my life. I'm hoping the kiddo learns to deal with this neurotypical quirk of mine as part of me. Believe it or not, he's displayed more patience in dealing with me dealing with the fact that I've had to let go of the dreams. Not only letting them go but finding some new ones at the same time. I'm sure mine aren't all the same ones you had or wanted but I know a few off the top of my head that I bet some of you need to hear.
Potty training. It's not gonna happen like every other kid you know at that age. Let go of that dream. Your other kid did it at 3? Super. So and so kid's did it at 2 when they saw their older sibling did it? Great. It's just not going to be your kid. It might take years for all the steps to be mastered. You may even get the fun of having them suddenly forget them and having to teach them all over again. It is what it is. Don't beat yourself over it. Also, realize this might require a team effort. Talk to school. Get it in the IEP. Make "going" the same across the board. Trust me.
Holidays. Your kid may not ever like them for a variety of reasons. To many people, to much fuss, to much different, to much upset of routine. Gatherings that used to be casual will now be work. So much work. In fact, some years, you might even fake an illness to get out of a family gathering just to cut yourself a break. (Not that we've ever done that family. Nope I swear!) The kiddo is nine. He finally got into holidays last year. You know all those magical first years where I was suppose to be making this perfect Christmas morning scene for him. Yeah, I had to let go of that dream. There was no rushing down the stairs at 3am to see if Santa had been here yet. He was pretty indifferent to it other than the lights outside and on the tree. Last year was the first time we even attempted to go see Santa in years. There are no annual shots of him on his lap for our holiday card. I let go of that dream years ago.
After school events and sports. When the kiddo was five, I signed him for special needs soccer. I live in an area where soccer is THE sport. I was excited by the idea of sitting on a sidelines with other moms and my coffee and watching our little runs play. I even thought the idea that it was made for special needs kids would help. I thought I was ahead of the game on that one. You know what? It still sucked! Majorly. He could of cared less. He ran all over. He refused to listen to the coaches. So even though I thought I had found something that could accommodate him, it still didn't work! I had to let go of that dream too. Cookie cutter accommodations don't work. I just can't throw my custom made boy into a ready made event and expect couture looks. Not going to happen.
It's not about me. It's not about you. I know letting go of the dreams and trying to find new ones that you both like is hard. I'm not saying it's been a side of fries. I just know that the more I check my ego at the door, the better he usually is for it. Sometimes I think I must of known this trip to Holland was coming. I've always liked tulips.
For me, it's been both a gradual acceptance and a chronic grief. I get hit by waves of grief when I'm faced with the loss of that dream you spoke of. So, this happens mostly around milestones: when the kids she was a baby with learned to ride a bike, started kindergarten, when they're mar mitzvahed, get drivers' licenses, prom, blah blah blah. I get it a bit each spring when the moms post the ballet recital pics, or soccer trophy ceremonies. But, I also appreciate the little things much, much more than I ever knew possible. People talk about the day their babies started to walk and they'll say, "umm, I think it was about 13 months or so." And I'm all, "September 28, 2006. She was 20 months and 4 days old." Because I know how hard my baby girl worked on that (and how much I spent in physical therapy bills, too!). I cherish every little thing because they don't come easy and they are never to be taken for granted.
ReplyDeleteI've got a long road ahead of me as Little Bird's mom, but I'm always making progress toward acceptance. After all, what's the alternative?
Now, does that mean that I will stop the therapies, the meds, the supplements? Not a chance. Because I'm not working with/for her to be cured, I just want to let her be the best that she can be and to function and feel as well as she can. I want her to be comfortable in her own skin. I'm not trying to change her. The stunning individual that she is today is so likely WAY better than whatever I could have dreamed anyway!
This is perfect - and a very timely reminder for me. Thanks, Mama Fry.
ReplyDeleteMy child is now 18. While I still struggle with this some, what helped me was actually taking some time and energy to grieve the loss of the child I expected. That helped me realize that part of this grieving is normal because we all have unrealistic expectations for our children before we even meet them. It also made room in my heart and mind for the adventure that raising this child has been. Lowering, changing, even eliminating a lot of expectations has been helpful for me as the mom. When I don't expect much from my child, the milestones he reaches and the good moments are like little surprise blessings. Am I saying don't set reasonable goals for your child and work toward them? Of course not! However, our expectations are often not even based in reality, let alone the reality of the situation in which we find ourselves. Giving ourselves the grace we'd like others to give us and our children goes a long way toward healing the grief.
ReplyDeletePREACH Sistah!!
ReplyDeleteYes! My ASD kiddo will be 5 in December and just within the last few weeks I've come to understand this life we all live with a new level of acceptance. I finally figured out that this advocacy thing....it's not going away. Ever. I think before this I was scrambling to try to get everything in place now so that the rest of the road in front of us was straight and smooth. I was in denial. I'm beginning to get it now. And I'm not depressed by it. I'm just accepting and feel like I'm ready to put on the mantle of My Son's Advocate. I still haven't completely let go of some of the dreams, but it's a step.
ReplyDeleteHello my name is Keegan and I work for the Sluis Academy based outside of Vancouver BC. I really enjoy your realist approach to this blog. Working with children with autism has changed my life. You really are one person who can justify venting... keep faith though your kiddo may make other dreams comes true!
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