11 days to go.....

I am starting to gear up for the start of school.  We are getting a whole new system in place to write u IEP's and so on the first day we will be doing training on that system.  It's supposed to be much easier.  I hope so, it would be nice to only worry about what is in the IEP and not how the paperwork works!

I hate that summer vacation is almost over, but part of me is glad to get back into the classroom.  I definitely need structure in my life and I love watching my students change and grow throughout the year.  To some people the changes may not seem all that large, but every step a student makes towards independence and self determination is a huge milestone in my book

I am starting to get together my list of supplies for the parents of my students.  I usually ask for paper towels (you know the kind that actually absorb:), tissues and diaper wipes, both for bums and faces.  This year, I am also going to ask for an 8 pack of large sized crayons, a 4 pack of play doh and a self inking stamp with the child's name on it.  The last item may seem a little strange, but I would like even students who cannot write their name  to be able to lay claim to their work.  I think pride is a good thing when you have accomplished something.  I also think that the more they see their name in print, the better.

I haven't decided what to do about snacks this year.  Typically I just buy snacks and when I was teaching elementary school, my students used the money for their community based instruction to shop for snacks when needed.  If you are a preschool teacher, what do you do?

Off the Path :)

relaxing on their first day at the beach

This has nothing to do with teaching, just wanted to share some pictures of our vacation at the beach.  We were joined by my daughters, their husbands and our grandson!

Snacks!

beach shoes

 

 

 

 

sisters

friends!

Who Decides?

Recently I read a blog concerning the care of children born with either Trisomy 13 or 18, which are syndromes considered "incompatible with life".  The blogger was concerned that because the child, who was born with Trisomy 13, had a "Do not intubate" order, although the parents wished the child to be intubated if needed.  This was a child born without the common heart and brain issues that many infants with Trisomy 13 have.  The parents did not find out about the order until after the death of their child.

One of the things the Mother of this child mentioned was that before Trisomy 13 and 18 were identified, children born with these syndromes were much more likely to live than after these disorders were recognized.  In my mind this means that the medical establishment predetermines what sort of lives these children will have.

My first question is,who are these people who have the ability to predetermine the quality of life of another human being?  My second question is, if we feel that their quality of life will be so poor, what are we doing about it?

Don't get me wrong, I have nothing against doctors for the most part.  But let's face it, most deal with a huge amount of information about diseases, illnesses, etc.  They are very knowledgeable people.  However, most know little about children with special needs and what they are capable of.  They also know very little about the quality of life of most of these children. I am not sure if I actually expect them to, however since they probably do not, I also do not want them to decide what my or any other child's quality of life may or may not be in the future.

I was at a TASH conference many, many years ago when I was pregnant with my second child.  I don't remember what session I was in, but there were many nurses in it who said they had witnessed a doctor simply let a child die immediately after birth because the doctor had decided the child would have no decent quality of life.  I made my husband, at the time, promise to be in the delivery room no matter what happened.

Getting A Whole Lot of Nothing Done!

Well,  I was going to try and write my blog daily, obviously that hasn't happened.  I have done some house cleaning and the other night actually was able to clean my upstairs carpet.  Good thing too, because along came that mysterious and evidently not rare enough storm that knocked out our power from Friday night until early Wednesday morning :(. 

Of course this had to happen during the week when temps were at record highs in the area and even though we have a pool, that my husband had just shocked the heck out of, you can only swim in it for so long when the pump's not working.  We eventually spent Tuesday night at a nearby hotel, which was heaven :).

Our poor doggy though was miserable because when the electricity did come on, all the bells and whistles of the security system and the smoke detectors were wailing away and there were no people at home to turn them off.  It's hard when you don't have opposing thumbs!

So I suffered a lot of internet withdrawal and now have a really good excuse for not writing my  blog. 

On Monday, I get to go to the doctor's with my daughter and see "pictures" and hopefully discover the sex of our soon to be second grandchild.  Modern technology is wonderful when it's working :).

Big Blueberry Eyes: Disability Blog Hop

Big Blueberry Eyes: Disability Blog Hop

            

Ouch!

Our poor baby! He evidently decided he could do skateboarder tricks without a skateboard!  He does things like that, he tries to do things he is not really physically ready to do because his little brain just doesn't get that yet :)

As parents and teachers of children we are always worried that our children will do this, try and do something they aren't ready to do in some way, either mentally, physically or socially and hurt themselves.  It's extremely hard to be brave enough to let them try and stretch.  And of course there are those times when we do have to say "no, that is too dangerous".

When your child has special needs it is easier to be scared and worried.  After all, we are in a situation we may have no experience with and we may not know anyone else who has had these experiences either.  And in the end we will drive ourselves crazy, should we have let him/her try? And if they do get hurt, we will berate ourselves forever more for allowing it.

This is one of the reasons I like to see listserves and other parent groups.  There is nothing as helpful as other parents who have been in the same situation giving us support and advise when we need it.  Although if your child has an unknown disability, knowing what the name of the disability is doesn't really change who your child is, but  knowing other parents who share some of the same issues that you do can help.

As for our grandson, I think a padded room might help :)

Sobering

The Angelman Syndrome community is one I feel fast ties to.  My first foray into the world of listservs and parent groups was the Angelman list.  I have had 8 students with AS, some I have become very close to as well as their families.  Most people with AS have amazing personalities.  There has been a study that shows that people with AS actually keep eye contact with others longer than the average person, and you can guarantee that usually there is a smile on that charming face.

Unfortunately, with the this syndrome also comes a seizure disorder.  This can be a veritable monster, pulling down families, stopping progress and sometimes even making kids lose skills they have already accomplished.  Some people end up with nonconvulsive continuous seizures, I have witnessed these quite a few times myself.  Sometimes children have to be put into comas in order to let their brains "rest and reboot". 

Right now there is a little girl named Kelce who has been in a coma and her parents are getting ready to take her off of life support.  I can't imagine what these parents are going through or what the other parents on the list are thinking.  After all, this could easily be their child in this situation. Having had a child almost die myself, I remember a little of how that feels, but at least that was a one time incident, not something that could happen at any time.

As special education teacher it behooves us to remember that the parents of our students may be going through these types of life altering events at any time.  When we wonder why the child doesn't come to school with their afo's, more diapers or and of those things that make our lifes in the classroom just a tad more difficult, we need to remember what really counts.

I am saying my prayer for Kelce.