heart problem in kid

[bluekrissyspikes]

well, i knew it was coming and today was the day. he is no longer allowed to attend regular school because it's dangerous and the schoolboard does not want his teachers to 'physically manage' him(ie block him from running away or stop him from hitting people) so no more school for him. he is also apparently too smart for special ed too so he can't go there either(this also makes me wonder if the lady deciding this even looked at his report card cause he failed almost everything)....*stress* it sounded like they were suggesting we 'medically intervene' by putting him on placement ie. put him in the psych ward which is not going to help nor is it what he needs..........

[Dragonfly]

Psych ward? Is that what we are doing now? This isnt the 19 friggin 30s. My god. What about behaviour classes? Home schooling? Something needs to happen.

[MaO3]

Oh my goodness blue. You sure have your hands full right now don't ya. Has he been seen by a cardiologist yet? What are the doc's saying about the heart issues?
I simply can't imagine what your going through with all of this. I just wanted you to know I was thinkin about you and your little man and hope that you can get some answers for him soon...

[bluekrissyspikes]

well we got to see the doctors today. we were there from 8:30 and we just got home. they said he has no apparent damage to his heart and his heart is back to beating normally, but he is still breathing funny which needs to be looked into. so thankfully that is not being caused by his heart like they said last time. we are supposed to try putting him back on his medication for the weekend and then take him in monday to get checked out again.
and yes, psych ward because if he was bigger he'd be unmanageable. psych ward is the fasted way to get his medications figured out and get him to see all the right doctors and probably get a referal for the neuropsych at sick kids. while that would be helpful i don't see him going co-operatively so it would be pretty traumatic and cause more issues in the long run. he has been attacking people and threatening them and he keeps panicing for no real reason but hopefully we will get that back under control if he is able to stay on his meds. he has also been escaping(not from me but at school) it has been very stressful and hopefully his heart does not start acting up when he goes back on the meds because they were making things alot easier for everyone. he is also staying off his ritalin now because of potential complications, which is fine by me. i didn't want him on that anyways, just did it for school.

[blueeyedgirl]

What school system is you son in?

[bluekrissyspikes]

public school.

[blueeyedgirl]

Is there any way that you can try him in the cathelic school system? My son is in public as well and if it wasn't for his school being so supportive with the pressures i have always been getting from the school board i would have moved him to catholic. The lady that manages the ieps from the school board is the one that always gives me a hard time. Hopefully you guys get the medical and school issues figured out. Poor little guy must be so agitated and confused by all the changes that are happening.

[bluekrissyspikes]

she is the one i'm having difficulty with too. she is also the one that suggested that he'd need to be put on placement and said he couldn't come to school anymore even though the teacher, ea, vice-principle and principle said they were okay with him being there and they'd manage him however it was necessary. i swear that she doesn't like special needs kids and she tried to tell me that autism wasn't a developmental issue so that goes to show that she is clearly uneducated on the topic. i'm not sure that i could do cathlic schooling for him because it would go against our religious beleifs. we are probably moving(well we bought a house but are waiting on legal stuff so it could fall through i guess) and once we do we will have a different lady to deal with although we will still be in the same schoolboard so his IEP will stay in place.

[blueeyedgirl]

I have thought of pulling my son out of the public system but i just deal with the yearly stressful IEP meetings by trying to avoid them. I just hate feeling pressured into trying to conform to her thoughts which seem to be that the children with disabilities need to be segregated. Hopefully you have better luck in your new area that you are moving to.

[bluekrissyspikes]

do you just have to see her @ iep meetings? we seem to have alot of meetings with them and sometimes she's there, sometimes she's not.

[blueeyedgirl]

Yes we just end up seeing her at the end of the year IEP's. I just send the letter back that I can't attend and hope and pray that they don't call and try to set something up. Last couple of years they end up calling and rebooking so that i am there. This year the meeting is set for tomorrow if i remember correctly so we will see if i get that call lol.

[bluekrissyspikes]

it's not the iep meetings that bother me. it's the ones that are called to 'discuss his behaviour' that i dread.. they never seem to end well and they are stressful. the teacher is great and everything but it seems like the spec ed lady doesn't grasp what autism is. she askes me about the same behaviours like it's me causing it and the answer is ITS HIS AUTISM...i can't punish him into being normal.

[MagicFingers]

As you know autism is a spectrum with varying degrees. Sounds like your son is on the higher end of the scale in which people don't want to accept that he is autistic and figure he should be able to function like most other kids. I would if you haven't already highly recommend you to read the books by donna williams "nobody nowhere", "somebody somewhere" and "like color to the blind" I hae not yet read her fourth book but she is autistic and she writes from the perspective of someone being autistic how it was for her growing up and all the struggles she has had to deal with from family, friends, school and such. Perhaps you can invite some of the professionals in his life to read these books and learn a thing or two as well. Her is a link to her website and hopefully you get the support and answers you need. Hopefully going back on his medications will help stabilize him without causing the heart issues again.

http://www.donnawilliams.net/author.0.html

[bluekrissyspikes]

to be honest i don't read all that much, i don't have time, but i may give them a look over. I'm not sure i'd say he's high functioning because that really implies that he'd be able to do his schoolwork at an age appropriate level and everything which he can't. he is outwardly 'normal' looking though and he is verbal so that affects how people see him. he does rock alot and do other stims but he doesn't flap his hands very much anymore and the rocking is only noticable when he's sitting so most people don't see it. he has an 'odd' way of speaking but not to the point that most people would think it was weird, just quirky. most of his problems are sensory issues and behaviour things. so yes, they do expect more from him and they expect him to be able to control it more because he seems okay when you just meet him for ten or fifteen minutes. those of us who have spent time with him understand more of what is going on.

[MagicFingers]

I say high functioning because where I used to work in Ottawa, "Ottawa Valley Autistic Homes", the individuals were all very low functioning, IE diapers, hand over hand activities, highly behavioral where we had a padded room. Sadly some of the professionals we have working with our children have very little clue as to the extent of someone's disability and can not go below the surface. The books are very much worth the read and she is able to put into words what it is like to live with autism, why she does some of the things she does and some of the techniques she has discovered that reduces some of her anxieties. I will always remember what she wrote, for her when she is looking at someone or something she does not see it as a whole like we do, she sees things much like a jigsaw puzzle maybe an eye, and a nose then a mouth and she has to process it and put it in what she thinks is the way it is supposed to look, to make up an entire face. She also describes the rocking as a way to get from her world to ours. She describes it as being stuck and the rocking motion is like trying to make that leap from where she is to where she needs or is supposed to be. She also talks about diet and how she discovered what her trigger foods were and when she eliminated them her anxieties and such dissipated. The other was that the old saying "through rose tinted glasses" she found that when she wore tinted glasses that the jigsaw was then put together and she was able to see things more clearly and as a whole rather than in pieces. Hope some of this helps, it really was very interesting.