Saturday, April 12, 2008

Happy Birthday to??..........(Couple swear words)

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To.............. Me ;) I am officially 33 years old. The things that you discover and realize about yourself in your 30's is truly amazing! You start growing from a "young woman" to a "woman". At least I feel like I do anyways lol. Someone correct me if I am wrong ;)

****I just realized many of you who visit my Creative Corner probably have never been to my main page. I created that journal, with the intention to write about my up's and down's and my journey learning about my son's disorder's. It ended up being used for a very different purpose, just my whole life journal with lots of pictures. If you want to know about my son's medical problems and more you can go to first entry in my main journal and read the first few entries. If you do not want to read this entry period that is ok also ;)  Just wanted to let any of you know who were wondering what it is that my son has...There is entries that will explain it in full detail ;) **********

Either way if I am a few years off, or right on the money sometimes the older I get I feel like " I am woman, hear me roar!" applies to alot more aspects of my life. Maybe I am just becoming a bigger bitch?? lol. But from what I have heard and seen over the years I would definately have to say I am proud to be a bitch! I can use it at just the right times and people know I am not playing around lmao.

My son's Pediatrician said something really interesting to us not long ago when we took Josh to see him because we needed a letter for school signed. (Going to give you a little background as to what the letter was and why)......When we enrolled Josh into this district last summer we had meetings with the whole team of Special Education staff here. We every single year have issues with someone as far as his schooling goes. We meaning, his dad, his sister, and myself (the 3 of us that have lived with him for 9 years) know Josh and his daily routines better then any other person around. We were told when my son was born and for the first year of his life during the many times we were told to call everyone we knew, because Josh was not going to make it through the night. That IF he made it he would basically be a vegetable, never talk, never walk, never see, never hear, basically his quality of life was going to be very poor. We never gave up hope.  It ripped our hearts into pieces over and over again but we kept hoping. We learned very early into it that WE were our son's voice and we did end up challenging his doctor's more than one time. And 9 years later we were accurate in the things we did challenge. Had we have done it their way Josh would have a voice box right now and never truly needed it. It got the point at Children's Hospital in our case that instead of just ONE time saying to us "we do not know" they guessed.

We have spent 9 years being very (and I mean very) consistent with everything and he today is not near where a 9 year old should be, but he is able to do alot of things on his own. And it is ALL stuff we were told many times he would never do!!??!! His world is different then your's or mine, but never the less he is happy, he is able to without talking show us in his own ways that we have taught him over the years what he needs. We have a ton of different things that we have figured out together...All of us..... learning what worked and didn't work to say get my son to take his jacket off, or not fight us and I mean literally fight sometimes us to brush his teeth, his hair, ect.

So then we take Josh to school and for starters he cannot be mainstreamed. He never has been and probably never will be. He has a 1on1 assistant the whole time he is there. But the break in Josh's schedule from home to school, the two different routines has made things so much worse many times. For him because it is to much for him. He has off days and on days. Us as his parents can tell just by the look on his face when he is going to have an off day. Those days no matter WHAT his school tries to teach him, he will not be receptive. Is it because we didn't wish he could learn a ton at school?? No, it is the opposite. We want him to progess as much as he can, we have just learned to be very real about what will possibly work, versus either make him take 2 steps backwards, or just not respond period.

We were told for the first 7 years of Josh's life that he was deaf. By hospitals, and his doctor's. He took one test that we were told that there was NO way he could fail it unless he had significant hearing loss. We told them they were wrong....WHY? Because we have been talking to Josh since he was a newborn, Josh could hear us and we KNEW it. They still gave him hearing aids, and a Auditory trainer anyways. WELL about a year ago we had him retested by the same woman who told us he was deaf and who also worked for the school district we were in and they repeated the same test and guess what? He had failed the test by choice. We told them that IF Josh did not feel like responding there was nothing they could do to get him to respond and well we were right.  She was in awe. I "guess" I was wrong is what she said. Here is the test I am speaking of.....

  • visual reinforcement audiometry (VRA) - a test where the child is trained to look toward a sound source. When the child gives a correct response, the child is "rewarded" through a visual reinforcement such as a toy that moves or a flashing light. The test is most often used for children between six months to two years of age.
  • This is getting really long and I had a point lol!

    But I do need to explain quickly what led us to my son's Pediatrician's comment he made to us.

    So we enrolled him in school. We were very straight forward about everything from the beginning. We all agree'd that Josh would benefit from starting school later in the day instead of being there all day. We all agree'd that communication was the number one priority. We have been threw this every year with every team he has. We have tried the PECS board. We have told them unless it is a picture he can relate to, meaning his stuff that he uses every single day he would care less about the little computer bit mapped images. Yet what happens every year? I make him a board at home with his own stuff and laminate it and velcro it. His school sees them every time. And then his therapist will come with the schools with bit mapped images he could care less about. So then I have to stop and ask myself and his teachers. How on the same page are we really?? We have had teacher's lie to us in the prior years and say they taught Josh something and even wrote it into his IEP's that they did and it was totally false.

    So this year we started the late start day because they noticed at a very certain time everyday he was ready to come home. All he did from that point on was cry, gripe, hit, pinch, try to leave the room, grab his backpack and try to get someone to take him out of the classroom. He seems to have a more progressive day when his day is shortened. So his teacher who is pregnant with twins (who we happened to LOVE) had to take her maternity leave for the rest of the school year and was replaced by a man who met after he took her place. He wanted this doctor's note for his records saying that his doctor agree'd on the shortened day. Which was fine but it is strange he has been going to school there since September and now in March this peice of paper is so important.

    There were other things that didn't sit right either. We ended up writing his new teacher a LONG email and we were very honest with him and pretty much filled him in on everything we say every year to all of his teachers.  A meeting was called, we sat down with about 6 people and a hour long meeting turned into a 4 hour meeting. Not one of us got out of the school til well after 8 in the evening. We left that meeting thinking we were all on the same page again for his therapist to come to our house a week later with the SAME wrong PECs board she did again. AFTER listening to us talk for 4 hours at the meeting. 

    SOOOO long story shortened as much as I possibly can without adding so many important details. When we got him in to see his Pediatrician he of course before even asking why he needed to sign the paper said he had NO problem signing it and that he knew from all the years that his father and I know better than anybody what is best for Josh. He knows that we are very able to speak our mind when it comes to Josh.

    He said to us "You know I wonder if one reason you run into problems with some doctors or teachers is because you two intimidate them?" He then said " Please don't take this as an insult, it is actually the exact opposite. But you two come off with an attitude that many may think your questioning thier judgement. They think because they went to school for X amount of years and have read many books that they know more then either one of you. And when they realize that you are not going to back down on your opinion then they get offended and may become harsh with you"

    We thanked him for being honest with us. It kind of put things into perspective if that is the case. Does it mean that we are going to ever change? Not a chance. It just made me think.

    WOWWEEE, this started out talking about " I am woman, hear me roar" to a small book lmao! I am going to post this entry in both journals because it is my birthday lol. IF it is to much for my always list to read no worries ;) You come to My Creative Corner for tags not nags!!! lmao

    Well it is late so even if I feel like I could keep typing and typing some more I should say goodnight to all of you.

    Love you and hugs, Robyn

    I did not check this entry for errors. So I hope it isn't too bad! ;)

    25 comments:

    cutieawpatooty43 said...

    HAPPY BIRTHDAY ROBYN! WISHING YOU A WONDERFUL BIRTHDAY! BLESSINGS TO YOU AND YOUR FAMILY!

    HUGS... ANITA

    suepclark18 said...

    (((ROBYN)))
    Have a great birthday
    Love and hugs to you and all your family, especially your special son x

    rebarks said...

    Robyn,
    I am awed by reading your entry. Firstly Happy Birthday. I'm old enough to be your mother and I want to say Right On to you DO know more about Josh than anyone else. I'm a former elementary school teacher (7 years) Then got my masters in social work and did that for 24 years. You are brave and strong and are the best advocate for your son. I am amazed you find time to do these tags but it shows how multitalented you are.
    My Best Wishes to You!
    Barb 820

    bgoulet30 said...

    Happy Birday Robyn!!!!!!!! Hugs Barb

    bgoulet30 said...

    Thanks for sharing Robyn!

    carolsixpac said...

    Happy Birthday! Wow you have been going thru so much. A mother knows her child better than anyone else and you continue standing up for you know him better than anyone else. Hugs to you all and I hope you have a great birthday-hugs-Carolina

    apaws2chat said...

    CONGRATULATIONS on your birthday Robyn may you enjoy your Special Day.
    Cute gorjuss tag just like the creator!!  lol
    Huge Hugs
    Linda

    mclr53 said...

    Happy Birthday Robyn, I hope your day is everything you had hoped for and more surrounded by those you love.  Your an amazing YOUNG woman.  I think I have shoes older than you are.  Keep fighting for your son, I am in much the same situation only now Jeff is 47.  It's been a long fought battle but it was worth every minute.  And for the record Bitch has been used in the same sentence with my name more than once. LOL  Blessings my friend.  Hugs jean

    sugarsweet056 said...

    HB!!!!! WOO HOO! HAVE A GREAT DAY!
    Hugs,
    Sugar

    hugsdoodlewacky said...

    ((((((((((((((((((((((((HUGSTOYOU)))))))))))))))))))I hope you have a very special Happy Birthday!!!!!!!!!!!!!!!I would like to read about your Sons illness and about your life.

    sunnybethe said...

    HI Robyn..I am a pediatric nurse who had a child with learning disabilities.  Not as severe as your child's, but convincing the medical and educational communities that I knew what worked with my child was a challenge to say the least.  Luckily I found some good people as advocates.  I didn't see a link for your OTHER journal~I was hoping you'd post it.  I had no idea that you had such a challenge in your life and no worries about "nags".  I found your entry intriging and all too familar!  
    When I was in my 30's I was not the meek insecure person I had been in my 20's.  I divorced an abusive husband, took care of 2 small children (one handicapped, both had asthma), usually worked 2 jobs, and made sure my son had the best help for his educational and physical needs.  Then I went back to college.  Yes, the Thirties were a time I became a strong, influentual person & an advocate for my children and myself.  What the DR pointed out-Waht I did was aske 3 questions of the teachers or Pyschologist (make 'em feel good) then I would interject my point.  Remember 3 is the magic number .  hugs Bethe

    sunnybethe said...

    OOPS...got my my soapbox and didn't say HAPPY BIRTHDAY!!

    hugs,  Bethe  

    seraphoflove9001 said...

    Hey! Happy Birthday!!! :o)
    Lisa

    queeniemart said...

    HAPPY HAPPY BIRTHDAY, Sweetie!!
    You are such a loving and good mommy and i am so glad you have Josh and he has you two!!!
    XOOX

    jjdolfin9 said...

    I already said Happy Birthday on the other journal, but hey, Lot's of Happy Birthday's to you and many more.
    Hugs, Joyce

    ktkamanski said...

    Hoping YOUR day is a happy one! Happy Birthday to YOU! Take care and have fun,
    Katie

    nay0114 said...

    Darn it I missed the day, but HAPPY BIRTHDAY anyways. I will be back I haven't looked at your work in awhile. I'm going crazy in my world. Just a couple of pictures of a prom that Lauren went to yesterday.
    Take care and Hugs, Chrissie

    glensfork4 said...

    I missed it (off PC all week) but HAPPY BIRTHDAY.


    hope things go better....teachers can suck...had issues with David all through school also, not for the same reasons, but when you know that your child is struggling and trying to do EVERYTHING you can to keep them (the teachers) on the same page is not easy, I know.

    Blessings to you.

    Michele

    chevyz71gurl74 said...

    Happy belated Birthday!!!

    Good for you and your husband being determined for
    your son..as far as the voice box and all goes...and the Dr's saying his quality of life would be slim...just goes to show you they don't know everything!!!

    Best of luck to Josh in school....I hope all goes well

    Hugs
    Terri

    jmoqueen said...

    Wow that was an entry and a half ;o)  LOL..........Happy belated birthday by the way.  I have to say that I found this very interesting and it's amazing what you guys are going through.  Just stick to your guns coz you have got this far xx  

    Jenny

    http://journals.aol.co.uk/Jmoqueen/MyLife

    linnpooh said...

    I've had a busy few days at my parent's house, and when I got home....I was too emotionally tired to do anything but skim through e-mails and crash. So I'm spending the day reading through the missed entries and getting caught up. I had no idea what you have been, and continue to go through, with your son's health and being an advocate for him. WOW....you are a strong and amazing woman and I have such respect for you. You all will be in my prayers.

    I hope your birthday was awesome!

    Pooh Hugs,
    Linda

    muirgddess said...

    Happy happy birthday to one very special lady!!!! I hope that you had a good day and g/f you are young!!!! Believe me, you are young and full of life..............thank you for all the beautiful tags that you make................I know I appreciate them
    Jan

    xaymacagirl said...

    Robyn,

    Your post shows just what can be accomplished when children are in a loving, supportive home.

    have a great day!

    sunyruby said...

    Happy Belated Birthday! Ihopeyouhad a great day anditwas filled with love joy peace and what ever else would make you happy.

    hugz
    sunyruby

    theprincesshazza said...

    First of all ..Sorry I missed your birthday honey, didn't know, but hope you had a good one xxxxxx((((HUGS)) for being such a MOM that cares so much, and is a SUPER MOM who keeps going no matter what....I am so sorry about your son, but happy that he has such wonderful parents as you and your hubby are to him...
    He has come a long way, and i know has learned more than people ever thought he would...And as you said he is happy in his own way, and that I am sure of....I will keep you in my prayers sweetie, you and Josh, and Bless his little heart....and You too honey for just doing everything possible for her son to make him happy...and loved so much....(((HUGS))) Shazza xxxxx

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