Well… as good as last week was, this week wasn’t so hot. Anna was suspended from school on Thursday for an incident that happened on Wednesday. I debated on whether or not to share the details, but decided that Anna deserves to have people understand her behavior… and if you see someone agitated and acting…
So we saw Anna’s geneticist Tuesday morning. Really the only changes since the last time we were in three years ago is that Anna developed hypothyroidism, she has increased laxity in her joints, and her kyphoscoliosis is worse. There is an additional test we could run now if wanted, but it’s quite expensive… $7-9K at…
Oh Holly my friend. Yes this is amazingly hard, far harder than anyone should have to deal with and these new challenges sound tough. But please remember how far you and Anna have come already, these years have not been easy and yet look at how wonderful Anna is. She is a beautiful young lady and I have every confidence that you will together, with the support and love from your family and friends, cope with these new challenges and the reality will be much better than what you are imagining right now. You are loved Holly and we believe in you, please remember that. Rebecca x
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I just want to say that your daughter is beautiful and your love and respect for her is so so so very beautiful. I could never imagine the challenges you face and you are a wonderful mother. <3
I completely agree with, Rebecca. You have been through so much with sweet Anna, but yet you both continue to grow and thrive together. All these things you don’t want to hear — will only make you all stronger. :::hugs:::
Oh Holly, I’m just stumbling on all of this after checking out your Facebook page. You are so strong and such an inspiration. Big hugs.
The My Four Hens Project 52 theme this week is Thankful. This week I got to spend more time with my mom than usual and for that I am grateful. After school Anna has been going over to Nana’s house to play nearly every day. I followed her over one day and found her playing with Grayson,…
Today marks three years since I last witnessed Anna have a tonic-clonic (grand mal) seizure. The 4th of July will always have extra significance to me because of this. I can’t say for certain that she will never have another seizure again but I’m definitely more hopeful now than ever before. I fervently hope that…
Wow what a journey you have been through. I hope she stys seizure free! How is she doing with her other diagnosis?
I can’t imagine all you have been through with your beautiful little girl! I hope at least the seizure part stays under control for you… My heart is with you!
As a parent, I can’t imagine going through anything like this. I hope she continues to do well and seizure free.
Holly, you are an amazing mother to a beautiful girl. I am so happy to hear Anna has been seizure-free for this long!
You’ve heard of Sister Wives on TLC? I feel an equal kinship with the women who’ve shared my journey with Anna’s special needs for the last ten years. I call them my Sister Moms. Our first get-together of the iVillage group was back in 2003. We called it the Rubber Duckie Reunion. When you find out…
Thanks for reminding me. Was wondering why I couldn’t shake my funk yesterday.
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pam - Why did the school stop using her BIP? Does the BIP state different levels of consequences? Does it state what they will do if she get’s physically aggressive? I had an autistic girl a couple of years ago, who would have these meltdowns around her cycle too. It was obviously PMS stuff. We learned to handle her a little more gently around that time, and sometimes I just pulled her into my classroom until she calmed down and was able to go back to her class. There are options.
Holly - Hi Pam, thank you for your thoughts. We stopped using her BIP in January because she’d had no incidents of aggressive behavior all year. What she’s doing now is completely new, so we’ll have to write the BIP from scratch and I’m going to push for consistent consequences as apposed to escalating consequences. It is very helpful to hear from teachers and get another point of view, so thank you very, very much for chiming in. <3
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