BACK TO SCHOOL

Jasmine just started 10th grade on September 8th. I love when she is in school and so does she. She feels smart and productive. She likes to discuss new ideas and ask many questions but only on the academic topics. It is impossible to get her opinion on any of the people who are actually teaching her. I was extremely curious what she thought of her new teachers. I asked her many times and in many different ways through out that day.
Any one nice? Anyone you like? Any one you do not like? All day the answer was the same! “Fine mom.” That is not enough information and drove me crazy. Later she was using the computer and emailed her assistant teacher in school. So with her permission I am posting her email on my blog.

She wrote the following:

I saw your pictures you look amazing
and thank you for sending me those pictures of the middle school
and i like all my class room teachers
they are beautiful and sweet and kind
love jasmine


I can’t wait to meet them on back to school night !

Finished first year of High School!!!!!!!!!!

Jasmine’s first year of high school is coming to an end. It has been an amazing year! She has two regents bound classes(science and global history) two re mediation classes (English and math) and is main streamed for electives which included health, baking, career exploration, child development and adaptive Physical education. She has a wonderful group of teachers. They are all very patient and accepting of her disabilities. She has an amazing one on one aid (without her she would not be able to manage all the different classes or organize her homework) Her aid encourages her to be as independent as possible and has a great way of getting the best out of her academically and physically (she uses only her walker in school!) In school she receives speech, occupational and physical therapy.

This year has been very hard! She started school recovering from a broken clavicle and a broken head! Other than warning the aid we did not mention this to the rest of the group ( although I am sure they noticed the crazy shaved head on one side and the arm sling) We did not want anyone to baby her and they did not. We were for warned that high school is not the middle school and the expectations are high and that the work is very hard. THAT IS THE BEST THING ANY SCHOOL HAS EVER TOLD ME! I have always known that if you teach her she is bright enough to learn. I have begged every school she has ever attended to please teach her. PLEASE RAISE YOUR EXPECTATIONS!

Jasmine is not a morning person and the day starts very early. Most days she was so tired she needed to sleep before doing any homework or exercise (she needs to exercise daily otherwise she is too weak to eat let alone study). This is a child that never napped in the day even when she was an infant. The work was hard especially science and global. These two teachers have a wonderful curriculum and the home works were frequent and sometimes required research to find the answers. Frequent tests and quizzes which were hard and sometimes just happened to fall on the same day. This does not sound unusual to anyone who has gone to school. But when you have a multiply disabled child it takes a very long time to physically do what is required of you. Two tests on one day meant that she was so confused she did not know where the science began and where the global ended. Prior to learning any of the content she needed much of the vocabulary explained to her. Or she used her talking dictionary to look up the key words. She is a very persistent, hard working young lady and I am so very proud of her.

Her science teacher (god bless her) instead of condensing the topic she expanded on each topic so that if the text book had two pages on a specific she would add fourteen more pages. I love this type of teaching because once you learn a topic in such detail you own it for life. The notes from this year have already filled a 4-inch binder to capacity and we just started a new binder. She has learned so much and with each day I am more and more impressed with how smart she actually is.

We have a rule is this house, get a hundred on the test or at the very least the highest grade in the class. I call this a” kick ass” grade and every day that she attended school she promised me “ I will try to kick ass!” What more could a mother want?

Augmentative device that fits into your pocket!

Jasmine has always been on the tiny side. Small for her age and underweight.
We looked into many speech devices for her in the past and none of them were very portable. Her speech therapist in school just found a app for itouch or iphone for less than $200.00 and the kid already loves her phone more than anything or anyone in this whole world(only joking- but one day we will need to have her cell phone surgically removed)
I am attaching the link for anyone who wants to see what it looks like!!!!! Really cool!!!!!


http://www.proloquo2go.com/

Happy Birthday Jasmine!

May 7th 2009

Today Jasmine turned 16 years old. I have no idea how old I am or how it is possible for my husband and I to have a 16 year old. The number alone makes me sick and dizzy especially if I say it out loud.
Dearest Jasmine have a very happy birthday my sweet daughter. We love you and are very proud of all your accomplishments (too many to list at this time)
You inspire us daily (more than you will ever know!
Love you
Mom, Dad and Ebbie

What are social skills and where do I get them?

The most frequently asked question I have ever heard??
How do I improve my Child's social skills?
In my opinion this is the hardest thing to teach , encourage or explain.
I took every stage in Jasmine’s development one step at a time and always sought professional help! I tortured all my close friends and family for opinions and suggestions for hours. I sometimes complained for days just to hear out loud how this new CRAZY (yes I am !!!) idea of mine sounded to someone normal and sane before I tried anything too absurd to mention. (ha ha that is a lie I have even attempted the absurd and on more than one occasion)
Speech delay= speech therapist, sign language, augmentative communication, prompting, enunciation, singing lessons and even oral mouth massage (don’t ask)
Fine motor delay= occupational therapist , play doh, pegs, Lego, writing , keyboarding , and now guitar lessons( who cares if she will never be Jimi Hendrix)
Physical delay= wheelchair, walker, physical therapist, swimming, horse back riding, Adele suit therapy, massage therapist and now tennis.

So how hard could social skills be?
Well I have come to grips. This is an on going , rip your hair out battle! We have had some great days but others will have you kicking yourself in the butt asking how did she do that and how did I let her get away with it?

Yes I did seek professional help and suggestion . This lead me to various support groups and social skills groups for Jasmine. She loves people so she had no problems attending and had tons of fun. The families were very nice and all had similar goals for their child. All the families wanted their children to behave appropriately in public, small groups, and of course large public forums. I TRULY LIKE AND RESPECT ALL CHILDREN REGARDLESS OF DISABILITY and seem to find a way to communicate and or engage with most of them. BUT for every positive skill she learned (the little monkey can imitate any ones behavior) she came home with half a dozen “oh my god let a black hole swallow me up “ behaviors. So I decided that instead of a group of children teaching each other all of their bad habits. I will look for a positive mature role model.

So this is what I did : At every stage in Jasmine’s development she has been fortunate enough to have a slightly older and much wiser companion to hang out and socialize with. To find these amazing people I contacted local religious groups and schools in our neighborhood. First junior high schools and then when she was older high schools and asked for recommendation of girls older than her that would be willing to volunteer there time (in some cases the schools gives them extra credit for helping) She has had amazing young ladies to positively socialize with and learn some cool expressions from. She now has a brilliant helper for tennis who was recommended by a close friend and she is kind enough to visit her frequently. They keep in touch via email, text and phone. (Rachel thank you !)

She also attends a special needs camp for three weeks in the summer. Can you imagine a place where you are engaged in fun activities, well cared for and all day long, everyday you get to play and socialize. The young people who volunteer their time are amazing. They are kind and compassionate and the type of kids that I want mine to learn from and be like.
Are we there yet? NO WAY but we are a work in progress!!!!!!!!!!!!!

I WANTED TO SHARE THESE AMAZING EMAILS I RECEIVED

Today I received a heart warming email from Jasmine! She decided that she too would follow my blog. She wrote "Why you want to write all about me in your blog?"

My response was "because you are the most interesting person I know!"
Isn't that the truth!
Also about a year ago a close friend of my sisters called me. She was very excited. She found the most amazing tennis coach and of all miracles he works with physically challenged students. (thanks Janet!) Dan Dwyer tennis coach extrodinaire! We will never be able to thank you enough! Honestly I will try anything! I was very excited about the possibility of her playing BUT I HAD MY DOUBTS!(she waddles like a duck) HOW COULD SHE PLAY TENNIS?
this is the email I received from her coach (smile, smile , tear, tear)

HI:

I have already forwarded the blog to my children and some close friends. I can't tell you how moved I was by it. One of the happiest times of my week is when Jasmine says: " Never, Never, Never, Never give up."

Since you have never gotten to see any of Jasmine's lessons you might think I am exaggerating but this past Saturday, Jasmine made some incredible steps forward with her tennis. In addition to being able to walk backwards and sideways without holding on to anything, she also hit several balls far better than she ever hit them before. Although it was only about 10 balls, this is a major accomplishment because it indicates that she is losing or has lost her fear of being off balance and falling when hitting the tennis ball.

I am constantly pleased by her progress on the tennis court but am equally as happy to hear how well she has been doing in school. She is an amazing young lady with a great sense of humor and a very inquisitive mind.You are blessed with an amazing daughter and she is truly blessed with parents who "Never, Never, Never, Never gave up.

God bless,
Dan d.

To type or not to type?

I have been trying to encourage Jasmine to learn how to type. IT IS LIKE A STUBBORN CONTEST AND SHE WINS HANDS DOWN! Why is this a current goal of mine? With how hard she works in High school and how much long hand writing she is doing. I thought great we could make it easier and faster by teaching her to type .
I have played every game I could think of to impress her. She loves when my fingers move over the keys and my eyes are shut . She thinks this is hilarious but not funny enough to work at it. She has tried before and with fine motor issues decided it is too difficult and she wants nothing to do with it. I downloaded many different programs that teach typing but she still hates it . VERY FRUSTRATING!!!!!!!!!!!!
Anyone with any suggestion HELP please post them in comments
Thanks

This is one of the great typing sites I found
http://www.bbc.co.uk/schools/typing/

Signing exact English AKA sign language

One of the best gifts that our family was ever given was the gift of sign language. When Jasmine was a very little girl an incredible speech therapist Cindy Arroyo introduced her to signs. Wow was that an amazing thing to behold. She went from pointing and grunting with much frustration to signing for foods, games, toys, and people in her environment. We finally understood what she wanted. It was a real language one we understand and one she was picking up like a sponge. She had a voice and a big brain and she had many things to tell us. We were blessed with an early intervention team that found us an amazing sign language teacher one of my now closest friends Phyllis. She was tortured with the task of teaching me the mother sign when all I wanted to do was watch her amazing ability to make every story a mesmerizing one. She showed me how to sign entire books (green eggs and ham that Sam I am) She would sing old McDonald , itsy bitsy spider, row your boat and Barney’s I love you, you love me, were a happy family. We were a very happy family Jasmine would sign I love you mom and dad and the entire family would melt. She was no longer whining or crying in frustration she had a wonderful voice in the palm of her hands. All the people that said if you teach her to sign she will never speak were so wrong. She is NOW fifteen years old and still has a speech delay! Some days you can understand her and on other low tone , tired days you have no clue what she is saying unless she signs at the same time. Sign was just the beginning for her . Sign allowed her to learn to read. She reads incredibly well and with the use of both voice and signs when she is reading you are one hundred percent sure she knows what she is reading because she sign not the words but the meanings of the words. She can spontaneously initiate a conversation. Glorious!

Today I realized that...

Oh Me!
I recently went to a support group for children with various different special needs and I realized something! I hate being the mother in the room with one of the oldest children! I still have the illusion of being young and happening. I AM THE COOL, OPEN MINDED AND NOT PRUDISH ONE. I can have the sex talk without stuttering or blushing.

I felt like an alien. As those sweet mothers asked me questions about sign language and augmentative communication devices, I felt so ancient! It is hard to imagine that some of the things these youngsters are just discovering I have already tried so many times and in so many different ways. I can only share my experience with these wonderful or sometimes horrendous methods.

It is painful to be the voice that bursts the bubble of enthusiasm.

I remember when she was little and she needed very gentle hands to introduce her to a lifetime of physical, occupational and speech therapies. I chose a preschool for special needs where I was confident that she would be safe and I was a very frequent visitor and watcher. I involved myself in the PTA and showed up unannounced several times a week to check up on them. I worried and I watched and I kept in constant contact with each person who worked with my Jasmine and I was delusional enough to think I was doing it right or that I was doing enough . . .

In the special needs boat without a paddle

Do you feel like you are paddling as hard as you can and only on very rare and unique days actually getting somewhere? My friend Eli who is now frequently sailing would appreciate this analogy since he knows I will gladly swim around the sail boat several hundred times , but I refuse to get in. My excuse is sea sickness. How did I ever learn to scuba dive?

I have a fifteen year old daughter with joubert /coach syndrome and it has been a constant battle daily just to get out of bed knowing that I would need to keep fighting. The problem is not the child. Jasmine is wonderful! best thing that ever happened to my family and I! She is a fun, happy , hard working girl. Most days I call her a creep or monkey and she laughs (great sense of humor) The problem is anything and everything I ever wanted her to do or be able to do, at least a dozen people have said she will never be able to do it.
Jasmine is " labeled multiply handicapped" has an IEP and now miraculously in the neighborhood high school taking fantastic courses and doing amazing well. The journey to getting here was very long. A long story and one which I finally decided to write about. YOU see I am a very talented , BRILLIANT mother with amazing ideas and talents (writing is not one of them ) You know the old motto " if at first you don't succeed.................................. " well my friend Barbara says "If at first you don't succeed change your strategy not your goal" I vowed to do that daily and so far (just by looking and spending time with Jasmine ) You can tell I am a great success ! :O)