Comments on: 21 LESSONS SINCE CEREBRAL PALSY DIAGNOSIS https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/ Accessible travel | Travelling with a wheelchair Mon, 27 May 2024 03:38:45 +0000 hourly 1 By: Julie https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/#comment-28220 Mon, 15 Aug 2016 22:42:29 +0000 https://havewchairmove.wpengine.com/?p=7039#comment-28220 In reply to Seana Smith.

Hi Seana,

I’m not sure how much dynamics are changed by the number of siblings. AJ and BJ only have each other so I guess that in itself gives them a bond. They are the dynamic duo. Whatever you do at the time as a parent I believe you are doing your best. I look back and wish I’d done this or that but at the time I was doing my best and that’s what counts. No time for regrets really.

Thanks for sharing and take care.

Julie

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By: Terry Wilburn https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/#comment-28218 Mon, 15 Aug 2016 21:17:45 +0000 https://havewchairmove.wpengine.com/?p=7039#comment-28218 https://www.facebook.com/groups/KidsNGeneral/ I have created this group if anyone wishes to join. It is a closed group to do with any and everything about KIDS. I started the group to share my story of how the school treated us. My daughter is 9 and born with Down syndrome……

Also I am running a campaign for a young lady living in VA Beach in a wheelchair. Please check out the campaign. I only need 11 more shirts to be sold and you have six colors to choose from…. I created the design to bring AWARENESS to those that use wheelchairs.
http://www.booster.com/supportfeliciasabitities?ref=copy-link_social_desktop-campaign-page-share-top-v2&utm_campaign=desktop-campaign-page-share-top-v2&utm_content=supportfeliciasabitities&utm_medium=social&utm_source=copy-link&type=1&side=front

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By: Seana Smith https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/#comment-28193 Sun, 14 Aug 2016 03:01:09 +0000 https://havewchairmove.wpengine.com/?p=7039#comment-28193 Hello Julie, I did so enjoy reading this and was nodding along silently.

We have our 19 year old with ASD, and I’m afraid that his siblings are finding him quite hard to live with and don’t seem to be very nurturing at all. I hope this will change as they get older. In retrospect, I wish we had had more time with the other kids over the years… I have minimised the impact on them in my own mind.

So important to trust your instincts and then to have excellent self care – always so much easier said than done.

Happy birthday BJ and here’s to the next 21 years.

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By: Julie https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/#comment-28190 Sat, 13 Aug 2016 20:45:54 +0000 https://havewchairmove.wpengine.com/?p=7039#comment-28190 In reply to Laura Bloom.

Hi Laura,

So lovely to hear from you. This will sound strange but I was wondering if all was well with your family as I miss our regular ‘likers’ on FB when names don’t pop up for a while.

I am so glad this blog post resonated with you. Hang in there and keep working towards those goals slowly. I had given up on walking for BJ in one way but we kept working on making him strong. His independent steps at 18 haven’t translated into him walking by himself safely but it gave BJ a thrill and us. It built his confidence and all the work on keeping him strong helps him stay healthy and independent with transfers etc. Sometimes the goal just needs to shift to the left a little and change ever so slightly.

Thanks for sharing and take care.

Julie

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By: Laura Bloom https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/#comment-28180 Sat, 13 Aug 2016 10:14:37 +0000 https://havewchairmove.wpengine.com/?p=7039#comment-28180 Happy Birthday, BJ! And happy birthday Julie, and your husband. What a milestone. I love your blogs always, and this one in particular had so many great points. The ones I most relate to are ‘BJ often surprises me with what he’ll do for others’ – yes! This is one reason why it’s so important for Leo to have opportunities to learn and do things with others, because when I am around he hangs on my apron strings, whereas when my husband and I aren’t there, it’s amazing what he can do! (I’ve seen the photos!) I also love ‘trust your instincts as a parent.’ Also, ‘ waiting on the big goals can sometimes be a long wait.’ I was waiting for Leo to talk for about five years, and it was very good to let this go. Of course we work on communication all the time, but our happiness as a family, and my pride as a parent should not depend on something that may or may not happen. BTW, that’s so great that BJ can swipe! Please wish BJ happy birthday from me.

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By: Julie https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/#comment-28179 Sat, 13 Aug 2016 08:40:33 +0000 https://havewchairmove.wpengine.com/?p=7039#comment-28179 In reply to Fiona.

Hi Fiona,

Very true. It is easy to feel confidence when you are inexperienced but you are right, you need to trust yourself.

Thanks.

Julie

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By: Fiona https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/#comment-28174 Sat, 13 Aug 2016 01:11:54 +0000 https://havewchairmove.wpengine.com/?p=7039#comment-28174 Lovely blog. Happy 21st BJ! I also have a 21 year old son with CP. I think your first point to trust your instincts is particularly critical for young parents. In the middle of so much emotion, confusion, information and inexperience it is so hard to trust yourself. Listen well and think about the whole family, but do what you think is right. Because you always are ?

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By: Julie https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/#comment-28168 Fri, 12 Aug 2016 20:56:19 +0000 https://havewchairmove.wpengine.com/?p=7039#comment-28168 In reply to Tanya.

Hi Tanya,

Thanks so much for sharing. I have seen a friend go through ice addiction and it is hard to watch all that is lost and how it takes hold. It must be extremely difficult for you to see your sister go through that.

Take care and thanks for sharing.

Julie

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By: Julie https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/#comment-28167 Fri, 12 Aug 2016 20:54:30 +0000 https://havewchairmove.wpengine.com/?p=7039#comment-28167 In reply to Birgitta Fairweather.

Thanks Birgitta.

Another lesson has been that my supporters (like you) make me stronger.

Love Julie xo

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By: Birgitta Fairweather https://havewheelchairwilltravel.net/21-lessons-since-cerebral-palsy-diagnosis/#comment-28161 Fri, 12 Aug 2016 12:40:12 +0000 https://havewchairmove.wpengine.com/?p=7039#comment-28161 Darling Julie, I have read every line above and i keep saying the same ….you are truly amazing ….you as a mother is the best of the best and i will never stop admiring you and your efforts

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