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Sunday, November 29, 2009

Sunday Frustration

So First and really not very important my son wanted a Zhu Zhu pet for the holidays as I wont' allow a real hamster yet as he is only 4. My son is not really able to play with things he still smashes them and he still has very little imaginary play. So I try to find toys that do things that he has joy from for now. I got a email last night from Toys R us telling me that ZHu Zhu pets are on sale tomorrow only 50 of them doors open at 7. I set my alarm for 4 I have no problem getting up that early, did it all summer for Boot camp.When the alarm went off my throat was so sore and I felt so exhausted from the thanksgiving cooking and cleaning and for the thoughts that I have been on disability one month and now Monday I go back full time. ( I have lupus) SO i tuned off the alarm. I am awake now disappointed in myself my son wont' even remember so I am not sure why I am kicking myself, but I am.
Then I wake up to read my emails and there is another email from another special teacher at my son's school. He was kicked out of dance as the teacher said he was not participating and acting up. Now today I get an email from the teacher of violin and the class pre-k teacher. THe violin teacher says he has no long term memory to remember where to put his hands and to remember any notes. I know 4 was young but this is the suzuki method and they do felt boards, clapping and jumping the pluck strings with no bow use for over 6 months, my son only lasted one month.
Then just am the pre-k teacher has told the director that he my son has no long term memory, erratic, and unpredicatable. I just had a parent conference and I guess it was sugar coated because I did not hear any of this??????
SO this Sunday I am frustrated. I am scared for him. I don't even know how to advocate for him, but I will learn. I just was hoping his Neurofibromatois would be his one hinder but it's not it's a learning disability and NF1

5 comments:

luv my NF boys said...

Hello. My name is Brittney and you dont know me. I found your blog through another NF mom. My 2 yr old has NF1 as does my husband. I am very sorry to hear about the stumbling blocks you are faced with. I was touched by your post and thought I would leave a comment. My nephew has Autism and I see the struggles my sister goes through with him so I can also relate to the learning disability challenges. But it sounds like he has an amazing mom. I know right you may not feel like it when everything isnt going right. But you are out there trying things for your son. Keep trying and something will work out. But I know your son must feel how much you love him and sometimes that is all you can do and that is ok. I have an NF blog I just started. www.luvmynfboys.blogspot.com Thank you for allowing me to read your posts. I do enjoy them

luv my NF boys said...

So hi just me again! ha ha I have been looking into this Zhu Zhu pet thing....Now I know it isnt the same but Walmart has "Furreal" pets that are kind fo like Zhu Zhu They have all different kind of pets. But the little ones like that Zhu Zhu's are like $10. Also, Cracker Barrel resturaunt has "Happy Hamsters" which are the same and they have the accesories and they are $10. I know it isnt the samething. Do you think he would notice? Just some ideas.

the three wise menn said...

Do you know that learning disabilities, hyperactivity, and trouble with memory are all common in NF1? I have done a ridiculous amount of research since Abigail was diagnosed and at least 50-60% of people with NF are L.D., A.D.D or A.D.H.D. and the memory issues go along with the L.D.'s. You might look into it more and talk to some other parents who have been through it. inspire.com has a forum for nf and facebook has a page called nf mom's rock that you can ask for more information on. Don't lose hope! I understand how frustrating it is, but you are a great mother, and will do a great job advocating for what your son needs!

luv my NF boys said...

I belong to the group "NF Moms Rock" on facebook. Great bunch of people over there and I also post to inspire.com good places to find others going through the samething. There is also a NF conference in Vegas next April through CTF.

luv my NF boys said...

Ok so I know you dont know me but I really need you to email me right away. "chemo 4 kyle at yahoo dot com" I might have something to help you out with Christmas!!!!! Brittney

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