Saturday, April 12, 2008

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

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 ;)

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 goingto 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! ;)


    swmpgrly said...

    I can understand both sides being the care giver to 16 blind people with MR.
    Sometimes I want to scream with frustration and they are not my children but I love them as if they were or almost to that extent any way.
    Happy birthday and keep up the good work...roar away.

    jjdolfin9 said...

    I remember 30 (sort of)  HAPPY, HAPPY BIRTHDAY TO YOU.  Keep on keepin' on my friend.
    Hugs, Joyce

    pharmolo said...

    Happy Birthday, 12 years' experience being 21 lol
    I'm very pleased Josh has defied the odds and done so well :-)

    nelishianatl said...

    Josh would not have came this far had it not been for parents who are so proactive on his behalf.  

    I am so mad right now.  I had no idea it was your BD.  Happy Belated Birthday.  I sure wish I'd have known in time.  I'm big on BD's.

    You are amazing.  In your 30s, you start being a woman and in your 40s you speak your mind more and don't care so much what other people think of you.  You seem like an accelerated learner.  

    I wish I'd known in time.  Now tell us about your BD celebration.

    These so called experts have really put you all through it.  Send me an email and vent sometimes.  I didn't know you went through all of that.


    carolsixpac said...

    I have read most of your journal-you and your family have gone thru ohh so much--my heart goes out to you. You are a wonderful wife, mom,grandma and friend-so stand tall-you have alot to be proud of. Happy Belated Birthday-hope you had a good one--hugs n love-Carolina  

    linnpooh said...

    I just read through the first 20 entries in your journal and I'm so in awe of you for the strength you have shown, and for the incredible stability and life full of love  that you have given your son. You are now my personal hero Robyn, and every time I feel like I can't handle the the trials that come my way, I'm going to try and remember you, and what your family has been through. Yet, here you are with this amazing attitude, and you never giving up on a better life for Josh or your other children. With all you have going on, you still have a heart full of love & giving, taking time to share your beautiful artwork with all of us here....never saying no when we ask for "one more tag". You are simply amazing, and I look forward now to following along with your life and becoming a prayer warrior for you & your beautiful boy.

    Love & Pooh Hugs,

    ashleekr said...

    Happy Birthday and to an AWESOME mom!

    bgilmore725 said...

    Robyn, I am a former EC teacher... I taught as a special education teacher for eight years. Parents like you were my best teachers. I know that all parents should be their children's advocates, but often that is not the case. Often parents don't attend the IEP meetings, or come and just want to get it over with quickly. When we meet a parent who advocates like you do, it isn't so much intimidating as it is a time of transition and change. There will be members on the IEP team who will support and encourage you, and there will be members who will already know what should be done. It's difficult when those opposing strong heads butt together... it makes meetings last longer, and longer meetings don't guarantee better understanding! The child is the center of it all, and doing what is best for the child should be the focus. There will be differing opinions about what is best for the child. I hope that you will continue to be his strongest advocate. Remember that although you will sometimes feel like the school is against you, they really want what is best for the boy. I hope you find more support, and that his learning continues to amaze them all. I'm going to read some more of your journal. Good luck! bea