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MJ's Dance Party

PotteryGal

Active Member
Wow, lots of heavy stuff going on here....

As for MJ and the clondine, etc...it is a lst resort (as pople who know us in person will attest to) I do use other methods when possible, brushing, redirecting, etc....but sometimes it just doesn't work and I have no choice, she is self-injuring and other-injuring when she gets going...which happend last night (again)

As for therapy, etc...we've been unsuccessful finding anyone who will deal with MJ. Even though she is homeschooled, her Neuro told us to go ahead and register her for school (she doesn't *have* to be registered until next school year) that they have to provide therapy, (they are required to from the age of 3) When I called them last month they told me to call again in July that they wouldn't register her now...so much for helpful.

I realize that a huge majority of teachers are fabulous, but we've had 4 teachers in the last year arrested for abusing non verbal special needs kids. I wish there was a way to differentiate between them.

We've also been told that she is *too funtional* for a one to one aide, even though she has a feeding tube, cannot potty train, is self injuring, will hit others, only speaks in single words, ASL and PECS....The 4 ST's we've had here have all wante us to choose ONE means of communication (ASL, speech or PECS) for her and we won't do that, we will let her communicate any way she can (we are just thankful she is still trying to communicate)

We don't want her in a exclusionary classroom that wouldn't be good for her.

If you do know of any resources here in FL, we'd love to hear about them. CARD won't accept her, the school district is stalling us, we're still trying to get UCP to call us back. We're exhausted from trying to find anyone that will help us.

I'm always happy to answer any questions.

OT: This is a very contemplative time of year for us too...although we give up yeast...

"too functional" for one-on-one aide? What a load of bull - is there a state educational group you can appeal to? I don't blame you for homeschooling MJ - the school district sounds lousy. I'm also surprised by them trying to restrict her to one form of communication. Joel's primary means of communication at first was PECs, as well as talking 'for' him when he was expressing an emotion. But I know they also used some gestures when communicating, although it may not have been ASL per se.
What is CARD Bonny? I've never heard of it.
 

MommytoMJM

New Member
for new clothes! My sister has a girl who's almost 3 years older than mine, so sometimes we get clothes that she's outgrown. Abby's legs keep getting longer every year, so I always appreciate my sister's help.

Lisbet has a grandbaby in Miami that all of MJ's clothes, shoes and toys go too, I am happy they are loved rather than just trashed...

I'm sure Bonny would be willing to talk to both of you. MJ has a lot of special needs, not all things will work for all kids.

I agree..if Bonny could use other ways of intervention that didn't involve meds - she would.

Thank you and you are right, I use it as a last resort.

Does MJ have therapists who work with her? Is she in any special programs where they work with her? If not, they have some great ones out there. Both of those are very important in helping special needs children.

If you know of any I'd love to hear about tham, we've had no luck here with therapists or any other kind of help.

That's true as long a MJ is following the therapists advice and all avenues were tried....The therapists have meds that can be prescribed....

We do have that med and it is only used as a last resort..

I can't speak for Bonny, but I can speak for myself, as I have an autistic son. I am sure there are many wonderful therapists out there, and I have no doubt they can do amazing things. However, the big obstacle is the financial cost of such treatment. Insurance won't pay for treatment as autism is vewed as a psychological disorder, and being in the middle income range, we make too much money to qualify for state assistance, and not enough to pay for it out-of-pocket. So for us, we rely on our public school system and additional speech and OT as the school can provide. For many parents, we just can't afford a team of therapists.
In MJ's case I would invite you to go to Bonny's website about her little girl, to learn more about their situation.

Ditto, we are a one income family and my husband works for Disney, we fall just outside the mans for help and if my husvband makes too much money we lose her SSI and Medicaid, so we are forced to basically live just over the poverty line:fork: It's a sucky situation and is also why people don't want to adopt special needs kids...

MJ has more people working with her than most people encounter in a year. She's a blessed child with good parents. Her mommy does what she has to in order to best help her on a daily basis.

Thanks Jess....

I'm actually doing an article about autism with my 8th graders for a few reasons, the main ones being 1)they need to read non-fiction for the standardized exams coming up and 2) it's amazing how many do NOT know what autism is and how prevalent it's becoming. The article goes into depth not so much with the children, but the teens and adults who find it harder to "fit in" and the parents who try to find the means for treatment and a way for their children to live once they pass on. Quite an eye-opener and I wish you the best with your son

This is a huge worry for us, Andrew is 41 and I am 37 as of this moment, if we died MJ would go into Foster Care, I have nightmares about it a lot. We've also had a lot of trouble with playgroups and MJ fitting in, she basically doesn't have any friends her own age...


Thanks Reg and welcome back....

Thank you - have you ever heard of Autism Speaks?(they have done a series of PSAs recently) They have a 12 minute mini-documentary called 'Autism Every Day', which will give you a very honest look at daily life. It was expanded into a 44 minute documentary that debuted at Sundance film festival to very positive reviews. Another really great documentary is 'Normal People Scare Me', which was done by an autistic teenager. It is a series of interviews with autistic kids and their caregivers.

I was looking for the link to that, I lost it...

It's actually mentioned in the article I'm doing and that I just linked. I honestly never heard about it. To be honest, even though I took a few classes on special education, I am not a special education major so I never went in depth on the different disorders, disabilities and such. So I'm still learning and it's all interesting. It's good that I become more educated though because of inclusion and the potential for having to deal with all kinds of students in the future :shrug:

I'm so glad you are educating kids, the more we do, the more we can integrate our kids into society and have them be accepted. When I was a kid, I woked on the Orthopedic side of our school in my off hours, it was very rewarding and ultimately why we decided to adopt a special needs child...

We definitely need more training for education majors, as the need for special-ed training grows. I applaud your efforts. :)

Me too :sohappy:

My wife is a RN and worked for a school that specialized in teaching autistic children. It's really amazing what these children can accomplish given a chance. Treatment and understanding has come a long way.

I really is amazing, they told us MJ would be a vegetable, she is certainley not that. She amazes me with something new everyday, the thing about having a child with exceptionalities is that even the smallest things are *huge*

That is so true. It's amazing how I see my autistic students blossom. They are truely precious.

You are welcome! I'm so glad you have such a wonderful teacher. That makes such a big difference.

Yes they are. I wish we could find a wonderful teacher for MJ, it would be nice to have a few hours to myself each day....

*slap*


That's blasphemous Connor. The Bible is the ultimate plot dear. The only book that really matters to some of us.

^^^^ What she said....

I always get so confused during lent. I am not a big meat eater, but it never fails that during lent I forget its Friday and eat meat.

We give up yeast, I inevitably make a mistake during it....

To eat meat? :lookaroun :lol:


LOL We do communion too every Sunday... our time of "reflection" is actually usually a series of drama's our church hires out to put on for the church family. It goes through the life, death and resurection of Jesus... so you really get a feel for what it's all about. :) I actually really love this time of year... it makes me stop and think about how much God gave up... sending his first and only son to die.... for me. Our pastor did a series on that this month, and he really drove home that thought... could you give up your child... for someone who's done so much wrong? Give up someone so innocent... for someone so guilty. For a world of guilt. My goodness. Gives me goosebumps every time. :o

Me too, I end up in tears thinking about that.

I love acappella. So beautiful... I'm more touched by music most often than anything else.

Music is the way I best communicate with God.

I wish we could talk freely about this. But I know too many differant opinions.

I'd love to do a bible study at The Spot, anyone else interested?



Jenny and Bonny and anyone else interested..Tonight On 60 miutes..A special on Autism.

(Sunday, Feb. 18, 7PM ET/PT on CBS).

Just wanted you to know..

I see Bonny! :wave:

Hello to anyone else that will be coming around! It's be a quiet day in the neighborhood up here. Joel still has a bad cough, so I kept him home from church this morning, and hope to go myself after supper tonight.

I have them set up to record already, but how sweet of you think of us....
 

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