Millie,
I'm so sorry you don't have more interaction with your step-grandchild. Special needs children can bring so much joy to a person.
Laura doesn't have a private one-one teacher. She has several one-one teachers/paras at her school. Just depends on the activity she is doing as to which one is working with her. No she can not read, write, sign, speak nor does she have any formal communication skills at all. We just basically 2nd guess her needs and wants.
Andrea
--- In epilepsy@yahoogroups.com, "Millie Myers" <mylmy@...> wrote:
>
> Andrea,
>
> Thank you. I have a step-grandchild who has autism. I've never heard him talk --
> but can he ever play the piano! I really don't know his mother very well -- and as
> a result I don't know really what all he can do. I only see him when my gang of 20
> or so gets together for a few hours.
>
> Does Laura have a teacher who works with her one- one? Can she read?
>
> Millie
>
>
>
>
> ----- Original Message -----
> From: advocating4autism
> To: epilepsy@yahoogroups.com
> Sent: Thursday, April 28, 2011 10:34 AM
> Subject: [epilepsy] Re: Introduction & questions
>
>
>
> Millie,
> Laura has always been in her age appropriate grade level. She doesn't participate in the same curriculum as the other students. She has her own personal daily education plan. When I say she is on a 6 month level I mean that for the most part she only understands basic living skills on that level. She is diagnosed with low functioning autism. Autism is a very mesmerizing disorder. Example: Laura doesn't understand the concept of going to the bathroom, she is still in diapers. On the other hand she can navigate a computer remarkably.
> So Laura can socialize with her own age peers the school system graduates her with her classmates each year to the next grade. She will interact in certain scenarios at school like gym, lunch, art etc.
> I hope this gives you a little bit more idea of her mental state.
> Thank you for your interest and letting me to advocate on the behalf of my Laura.
>
> Andrea
>
> --- In epilepsy@yahoogroups.com, "Millie Myers" <mylmy@> wrote:
> >
> > Andrea,
> >
> > What do you mean by mainstreaming?
> > Since her mental level is like a 6 month
> > old baby -- do they just push her thru the
> > classes?
> >
> > Millie
> >
> >
> > ----- Original Message -----
> > From: advocating4autism
> > To: epilepsy@yahoogroups.com
> > Sent: Wednesday, April 27, 2011 8:58 AM
> > Subject: [epilepsy] Re: Introduction & questions
> >
> >
> >
> > Millie,
> > Laura is able to go to school. However, she does miss a lot of school too. I would say she misses about 20% of the school year due to seizures. When she has her grand mals they are typically when she is asleep at night and she is able to sleep afterwards to recover. That's not to say that she hasn't had a grand during they day because she certainly has but thankfully the majority are at night. Her petit mals and myoclonic due happen throughout the day and she is able to recover immediately from those.
> > I do have to say since she is autistic she does not function or learn at the same rate as the other children her age. She is 13 and functions on the level of a 6 month old baby. She is mainstreamed at her school.
> > Like you, I too have epilepsy. I am on Depakote. With my history and now Laura's, I've come to know much much more about seizure disorder than I could have ever imagined. That's over 35 years and I still fill like a novice.
> > It's a tough road but do-able.
> >
> > Andrea
> >
> > --- In epilepsy@yahoogroups.com, "Millie Myers" <mylmy@> wrote:
> > >
> > > Is Laura able to go to school with that many szs a day?
> > >
> > > My szs started when I was carrying my second daughter
> > > so I have no experience with a child.
> > >
> > > I have been on Dilantin and Phenabarb for over 20 years --
> > > 2 of the oldest meds -- but they work for me.
> > >
> > > Millie
> > >
> > >
> > >
> > > ----- Original Message -----
> > > From: advocating4autism
> > > To: epilepsy@yahoogroups.com
> > > Sent: Tuesday, April 26, 2011 11:58 PM
> > > Subject: [epilepsy] Re: Introduction & questions
> > >
> > >
> > >
> > > Thank you Malgorzata for replying to my posting.
> > > Laura started having infantile spasms within weeks of birth. Then started developing other forms of seizures. Myoclonic, febrile, petit mal and then around 3 years came grand mal. She was diagnosed then with Lennox Gastaut Syndrome. Besides her seizure disorder she is also diagnosed with low functioning autism. In the early years of life we went through a gamut of metabolic disorder testing due to the seizures but since all were negative and she has over 3 different types of seizures the diagnosed her with LGS.
> > > Thanks again for your time.
> > > Andrea
> > >
> > > --- In epilepsy@yahoogroups.com, Malgorzata Wolak <malgorzataqueen@> wrote:
> > > >
> > > > Hello .
> > > > I would like to ask why she has seizures from birth , did you ever received an answer from a doctor ? Many things could be in a question zone but answers to them is the way to find the right correction . If you don't mind to tell me that I could have a better answer for you .
> > > > In the mean time God bless ....my son is recovering from all of that slowly...
> > > >
> > > > --- On Tue, 4/26/11, advocating4autism <andrea.mcginley@> wrote:
> > > >
> > > >
> > > > From: advocating4autism <andrea.mcginley@>
> > > > Subject: [epilepsy] Introduction & questions
> > > > To: epilepsy@yahoogroups.com
> > > > Date: Tuesday, April 26, 2011, 2:36 PM
> > > >
> > > >
> > > > Â
> > > >
> > > >
> > > >
> > > > Hello everyone!
> > > > I have a beautiful 13yr. old daughter with LGS. She has suffered from seizures since birth. We have gone through a multitude of medicines, Ketogenic diet and 2 implants of the VNS over the years.
> > > > As of right now, she is on Depakote Sprinkles and Keppra with a back up for status seizures of Diastat. She also receives a hormone shot that helps with seizure activity. Current seizure activity is 1-3 grand mals daily and 30-50 petit mals daily.
> > > >
> > > > Here are my questions:
> > > >
> > > > 1. VNS: Has anyone ever gone beyond the 50% range on the VNS with the duty cycle? We had a new battery implanted last year and are already at 44% with the duty cycle and several neuros have said we are pretty much maxed on that aspect. There is room for interrogation on the other settings.
> > > >
> > > > 2. We are introducing Vimpat(lacosamide) to the already existing cocktail of Depakote and Keppra. Anyone have any input on this fairly new med?
> > > >
> > > > 3. We have been thriving for seizure control since infancy for 13 years. How does a parents decide when it's time to stop tormenting your child with treatment changes and just accept the amount of seizures happening to be acceptable with a diagnosis of incurable LGS?
> > > >
> > > > Thank you for your time and input.
> > > >
> > > > Andrea
> > > > Mother to Laura
> > > >
> > > >
> > > >
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