But if I'm being totally honest, his words rattled me. Shook me to my core. I sat back and wondered if maybe he was right. Maybe he couldn't do it. Maybe he couldn't move his walker forward, while simultaneously using it for support. Maybe his walker would only ever be used as a support for standing. Maybe this was as far as he was going to get in the walking process. Maybe this was as much as his body would allow. And for a little while I was devastated.
But then, eventually, I got to thinking about how long it took to get him this far. I thought about how I strapped him into his RGO walking brace, and walked him around our house every freakin' day, for over a year before he would finally take steps on his own. I thought back to when I was trying to teach him how to crawl, and I would follow behind him, moving one arm, one leg, one arm, one leg, for what seemed like forever. I remembered how everything Liam has accomplished, every milestone he's reached, he's done in his own time, not mine.
So, for now, I say NO. No, we will not stop trying. No, this isn't as far as he goes. We will try, and then we will try again.
I tell my girls we don't say no in our house either. Yes, it may be a bit different in the reasoning for them, but still couldn't agree with you more. And you really right how we have to be the ones to push our kids to strive for the best and only the best. So totally agree with you on that.
ReplyDeleteYou are so right, Janine, I think it's a great parenting philosophy, regardless of whether you're a special needs parent or not. And sometimes it is so, so hard to push Liam, but I know it will benefit him in the long run. :)
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We don't say I can't or no at my house either. If we had JDaniel would have never learned to swim. He has hated going to the lesson, but learned a lot.
ReplyDeleteThose are hard words to hear. At the very beginning of our journey an OT came to our house, she only came a couple times but she told me a few really helpful tips regarding parenting a child with special needs. One was basically "don't pity him, push him." She told me people may think I was cruel but all kids special needs or typical need to be pushed to reach their potential. There's been several area where I have pushed my son really really hard because I knew, I knew so deep in my heart that he could do it and it eventually paid off. There's been some other areas we're still working on and this is encouraging to read for me to just keep working with him. Sometimes I am the one who feels like giving up, It gets hard pushing them and working with them all the time but like you said its so helpful to think of all the things we worked on and then all of a sudden he was doing it and the pushing began in another area.
ReplyDeleteLooking forward to hearing how he does in the coming months! I really enjoyed this post, such an honest reaction and good revelation about the situation.
Ah Brigid, you are such an awesome mommy. I was right there with you as you described one arm, one leg, one arm, one leg...and I know what you mean about feeling torn about "is this too much? maybe he REALLY can't" and knowing, in our mama hearts, that they really really can. They just need some help. And sometimes, so do we. Beautiful post, friend! Seriously awesome.
ReplyDeleteI use the same words in my house too. We don't say I can't, We don't give up, We try again.
ReplyDeleteAnd every single time I say them I feel terrified inside, that I might be pushing them too hard, or too far.
That is to say, you aren't alone in these feelings.
But with the love and support, that are evident from your post, I am sure he will get it, that it will indeed not be the end of the road for you.
Good luck!
*got here through Love that Max
I must say, I do say "can't", but I say it with reason. I am an adult of course, but sitll in a position where others decide on my goals (in an institution). The reason I say "can't" sometimes is because I want to be able to try myself, but not because a staff tells me I need to get this goal managed. If I do whatever the staff tell em tod o no matter how much energy it costs, it means I have no energy left to take initiatives to do things for myself. I know it's important ot learn, but maybe his goals are different from yours Maybe he gets aroudn fine in a wheelchair, but it costs him lots of energy to walk (this is your first post I read, so I don't know if your son uses a wheelchair). Then so what? Practical independence wont'get you nearly as far as self-determination. Just my thoughts. Please don't assume I'm saying you do something wrong.
ReplyDeleteTo judge by the video, he did really well. And so did you :) Keep slogging away at it - I reckon you'll be able to gauge how much he can cope with before it becomes overwhelming for him.
ReplyDeleteOh, yes, Liam does really, really well when he's wearing that walking brace. We're trying now to get him to do it without wearing the brace, since that's mostly for physical therapy purposes. So far he's got the standing down, but still working on pulling that dang walker forward. Thanks for the encouragement! :)
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I just keep soaking up that kiddo! He is so stinking cute and smiley! I love, adore his hair! I was just reading your 101 course...it was really well done. I have quite a bit of experience with SB work and personal ( neph was born with a meningocele...he is now in his 20s and doing great!) I just have to say WOW ....Liam's foot surgeries and all hes been through he looks fabulous! and HAPPY! His feet look great! Its not easy going through all those surgeries etc for anyone involved.... great parenting...I hate to hear idiot stories like your television experience (NEGLECT! ACK!) and have written many a letter to television producers, broadcasters etc.... some do nothing but others apologize which I immediately send off to the appropriate association for publication ( eg SB association etc...) Best to you and your family.... thanks for sharing your experiences... they mean the world to a lot of folks dealing with the same stuff Im sure!
ReplyDeleteThank you so much, Zoe. It took me almost a year to finally sit down and write that SB 101 course. Thank god I took notes, though, because that first year full of surgeries is pretty much a blur. Liam has been so fortunate to have some of the best doctors in the country. How lucky that we lived only 3 hours from Chicago -- one of the top SB clinics in the country?! They have truly done wonders with him. Even I still can't get over the transformation in his feet! And now you have me thinking about writing a letter to the television producers! I guess, at the very least, I should send them a copy of SB 101. :)
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