Sunday, October 07, 2007

My Daddy and Me

Like Father, Like Son
These are my two boys..
if there was ever a child
who was attached to his father...Sammy is very attached to his Daddy.
Sammy has never been with a babysitter in life..
Only on two occasions..
We are heading out of Labrador me and Sammy
We will be going to the Janeway Children's Hospital in St. Johns, on the island part of the province.
This is like a two hour plane trip.
I am surprised my son has agreed to go with just me.
The first time he went with me alone ..over 4 years ago..
he was very upset to be away from his a new place..
The Janeway is housed in the Health Science Complex
It is a very big building..
Sammy decided to run away from me..because I could not take him right away home to see his father..he decided he would run away to see his dad.
not understanding..just how far and impossible it is to do this..
it took us two hours to find him and another hour to get him out from under the stretcher he was hiding under in the stair well.
This was quite the scene.
Here were these big security guards...threatening get out..and the more they threatened him, the more scared he got.
I grabbed a female security guard who was passing through the stairwell..and begged her to come and help pleading "this needs a women's touch, they are scaring him to death"
within 3 minutes she had him out..back in his wheelchair..and laughing his way..down what seems to a crippled mother..a mile long hallway to the Janeway unit.
This trip out is long overdue, and we have much to cover in the 4 days we will be there.
Sammy will have assessments done regarding his functioning abilities, eye, dental, and surgery consult for his hand, physio consult, Occupational consult, recreation consult etc.
I have debated for a few years over botox therapy..for Sammy's left side..but botox would mean trips to Montreal, every three months.
not easy when traveling such a long distance and although travel is paid for ..under his health care benefits..there are still so many things that are not covered that make it to difficult to do it.
You will notice in the picture that Sammy's left side is much smaller then the right side..especially his hand and arm.
He do not use his fingers on that hand...but will use it like one would use a assist him in stabilizing something..
when Sammy is concentrating on a task or trying to use it..the muscles to the hand tighten up and cause his hand to curl backwards into a unnatural position.
This keeps him from having a chance to use his hand to his maximum potential
If they release the muscle, tendon or ligament that is causing this.
It will give him the best chance to be able to gain more function to his hand.
This was a decision I waited to make for Sammy until I felt that it was something
he could understand and want to work with and I feel he is ready now.
He will be home where his occupational therapy can be incorporated in his daily school..they refused his physio and OT..the principal stating..that no one was coming into his school telling him what to do..that has been not a good thing for Sammy, as all the time he was in school..the individuals working with him..could have done so much more encouraging him and helping them understand incorporate his challenges, if they had been willing to function as a team..
Here in this province as well as other provinces and states they have what is called an Individual Support Service Planning Team.
The Team consist of individuals who are involved in the child's care coming together in the best interest of the child and developing a plan to help identify the child's strengths and needs, so as to best help the child and the family be able to meet those goals to ensure maximum success in life.
Even though I set up the individuals to be a part of that team..being all people involved in Sammy's World preschool, the school refused to have them involved and deliberately stopped calling them to attend his ISSP Meetings and stopped the physio therapy assistant who was coming in the school once a week..doing physio with Sammy and teaching Sammy's Student Aide how to do his therapy so she could do it each day through the week.
The student aid refused to do his therapy stating it was not her job nor was it her job to clean his ass...
knowing this, I knew full well, that should Sammy have his hand surgery, he would not get the help he needed in school to make it successful.
The application has gone in for approval of Sammy's home schooling..but we are yet to hear back from them.
We have been busy though.
Putting back together the team the school dismantled..and once we have this trip over with will have a better handle on what more to be doing for Sammy then we are already doing.
I am pleased to find your support in this matter..but also to know..and understand..that others would be concerned over their child's emotional health and well being.
I never knew how badly these experiences with the school, kept me in constant fear, that one day I would be getting a call saying your child is dead..until I took him out of school..
I am amazed by the amount of mental stress it was causing both of us as parents..and now that it is is like being brand new people, and think that it was a stress that had grew on the inside of us..that we had become so used to we no longer realized what an effect it was having on us..until it was gone..all I can say is wow..what a difference with out that worry over his physical and emotional well being.
I am pleased he is back enjoying his computer living books..something I have not seen in years.
We have his map for our geography project and have upload a few commerical use in exchange for postcard to Sammy on his on the side bar.
When we get back we hope to pick out and upload some more photos of interesting things that people may want to use..such as flower and texture photos.
I want to say a big Thank you for all of those of you who left me comments, support, advice and links to help make home schooling Sammy a sucessful experience.
I think it is wonderful to be able to reach out to so many and get such wonderful help and kindness when I am so shut in such a small world.
I cannot say Thank you enough..
Only a big heartfilled Thank very much.


Anonymous said...

Joanne, you and Sammy stay in my prayers and thoughts. You need to report that principal for not allowing Sammy to get the help he needs to grow in a proper school envirnonment.


Anonymous said...

I did not say this the last time I left a comment, but I have a child that is considered by her test scores not to have a learning disabilty, but she still requires additional help. She has lanuage based issues and does not think from in a straight line from A to B, so it takes her longer to proces things. She is very capable of making progress and learning, but she is like one step behind. I went to a meeting for her last month and the psychologist was saying she does not appear to qualify now, but might next year or the next. I looked at him and said No. Once apathy sets in, the game is over. She needs help now and everyone that works with my daughter on a regular basis agreed and as a team we were able to build a case for her. She now is getting more help. The point to this, is you hear about those rude Americans...gues what sometimes you have to be a rude American. A little butt kissing helps too, but sometimes you have to put your foot down and say no. Good luck with your homeschooling and if you need more resources or links, let us know.

ida macken said...

I'm so happy that you are all doing well, hope you have a great trip too. Thank you for the Star's freebie also.

Sammy & all of you have been in my prayers & thoughts, I don't know too much about your part of the world but if a principal and school did that here you could definately take them to court for civil rights violations. You might want to find out if that's something you can do there, it's not right for them to treat people like that.

See you when you return ;-))

xashee's corner said...

HUGS to Sammy and you!! As soon as i find your addy, i will send you the info for Chelsea's charity kit and thank you so very much in wanting to participate! :D