Monday, June 18, 2012


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 :)

Thursday, June 14, 2012


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.

                                                         Click to show "Angelman syndrome" result 13       

Wednesday, June 13, 2012

Time to relax......sorta

The end of the school year ..ahhhh.  The end of the year at school is always brutal.  You have to tie up all of the loose ends, make sure everyone and everything is going to where it is supposed to be going for the summer.

Then I have all of my doctor visits that I have put off until the summer, finishing that root canal (oh joy!) my neuro appointment, for my migraines and other various parts of my body that need to be checked :)  No rest for the wicked, evidently.

Today, however, I have decided to take it easy and enjoy my "9 weeks of vacation" that my husband keeps telling me about.  I don't know why, but that doesn't sound like the infinite summers I used to have as a child, the number 9 is pretty darn finite :).  However we are planning a week long vacation to the beach with my daughters and their familys, plus two days at the beginning for my husband and I to have some alone time.

Father's Day is coming.  I know there are a lot of wonderful fathers out there.  I didn't happen to have one, but I did have a loving grandfather for part of my childhood, so I was lucky on that count.  That man up there, in the picture, the one I married 12 years ago, well he is learning to be a grandfather.  And unfortunately for him, he has to do it surrounded by others who have either been life long parents, new parents and other relations.  But I have to say he is doing a wonderful job.  He plays with Jack at the park, makes him a pirate's booty chest, filled with beautiful jewels and seashells (courtesy of Michaels) and rides a bee at the park with him :)  I am very proud of him and happy that Jack gets to grow up with him around. I think he deserves a "Happy Fathers Day" for that, don't you?

Wednesday, June 6, 2012


"Normal is a setting on a washing machine", normal has nothing to do with people.  People come in every variety, more than we can ever imagine, greater than we will ever know.  Unfortunately people who are different make other people uncomfortable and even afraid.  Why are they afraid?  We are often afraid of things we do not understand or who do not fit our definitions.  Unfortunately, we don't like to be afraid and so we see these things/ people as abnormal, different, wrong.  If people were allowed/ exposed to others who were different from themselves, they would gain knowledge and comfort.  This sounds like a good reason for inclusion doesn't it?

Monday, June 4, 2012

Not a Downs syndrome kid

I truly hate when I hear someone say, "he is a Downs Syndrome child".  First of all, it is Down Syndrome and most importantly, he is a child first and he just happens to have Down Syndrome.  People, especially educators really need to remember that they are dealing with a child.  A child with parents who love them and siblings who care for them.  When we look at a child as a syndrome, we forget they are a human being.  We forget to treat them as we would want our child treated.  We forget that they have their own special talents and traits.  That their family has much more to do with who they are than does a rearrangement of chromosomes or metabolic issues.  Yes, it is important to know about medical, behavioral and educational issues that are associated with specific syndromes, conditions and disabilities, but that is only a gross picture of a person, each is an individual and must be experienced as such and cherished as such.