I'm behind again :)

big surprise huh?

I really have been working on a blog post - it's a doozey - about Educating Brady. Which has been our single biggest hurdle of him having Down Syndrome - by far!!!! And my single biggest headache and stress inducer - thus my thoughts on facebook about school making me fat and insane ;) I joke about it - but really - it has been hard - and I am trying to figure out exactly what makes it so darn difficult.

Sometimes I wonder if I am expecting too much. But often I feel that the people who work with Brady expect too LITTLE!!!! I sat through an IEP for a friend last week, and listened to a man go on and on about how stubborn and defiant children with down syndrome are. I just wanted to reach across the table and grab him and say - sir - if you could not communicate exactly what you were feeling all the time - wouldn't you show a little stubborness - and what could be considered defiance (as in non-compliance - won't do what they are asked) because that is the ONLY way you can say - "I can't do this - it is too hard" "I need help" "I don't understand what you are asking me - you used too many words, too difficult of language, too many steps" "why do I have to do this - I don't see that it means anything to me". I cannot stress enough - behaviors in children with down syndrome are a form of communication - and it is up to the caregiver, teacher, aide, special ed teacher, therapist to try and figure out what that communication is saying. More work - easier to just work on having a compliant child and lowering expectations- rather than trying to figure them out and expect things from them and work to really affect their lives. This man expects too little (although he really was a nice man and very supportive of my friend's daughter in her inclusive environment - he had just worked at a school specifically for children with disabilities as a psychologist and worked with many children with down syndrome - most likely in a testing environment - and if those kids are like most children with down syndrome - sorry to generalize - but it is true - they don't do well on standardized testing - the language confuses them and they really don't see the point of scoring well, and what it means to them, for the rest of their lives (hence - we parents always take these tests with a grain of salt - because really - Brady is much smarter than the sum total of his standardized testing - if we went off that - it's amazing he can walk, and talk, sing and he definitely can't be expected to read because his IQ is too low ;) (wow - how was that for an amazing run on sentence? My high school engish teacher would be so proud - NOT).

I admit - Brady is not always compliant - especially when you are pushing him to work on something that is hard for him - but he WILL do it if he realizes that it is important and if he is supported in ways that help him to feel and BE successful. Having him write things is hard - he struggles so very very much with fine motor skills. It's not just a little bit hard - it is really really hard for him - and he will tell you so - either by refusing to write, throwing his pencil, yelling/crying, saying no, or occasionally smacking you. Now - do I condone these behaviors - no way - do I try and help him have the words to use to tell people what he feels about writing - you bet (I am hoping he never learns the ones I think he would want to say ;). But I know it is important for him, and that eventually he will really like writing letters to people and getting them back in the mail (so if you get a letter from Brady, please please write him back ;) So - we persist. I do think that eventually we will move to typing things, as that will be much easier for him fine motorwise and probably help. But - I do want him to be able to write letters, and in his journal, and find joy in that. That may never happen - the joy part - but - heck it is a good skill if a computer is not at hand ;)

But - I ramble (another big surpise - hey?), we have had Brady write notes - just a simple sentence to his teacher each night - okay - it started out as each night - and we have slacked off significantly - it isn't like Brady is to the point yet that he is bringing us a pen and paper and saying - can I write a note to my teacher??? Maybe someday??? Anyway - this writing thing - it has been GOOD for him - really good. He writes the note (maybe I like school - or Samantha is my friend - or I went to Tangled) and then reads it to his teacher and his aide each morning. Works on writing, sentence structure, spelling, and reading - all good things. Well - since we have done that this year - he has been more willing to write with HOH assistance and with no assistance than ever before. Progress yes!!! Baby steps - for sure - but heck, we celebrate the small victories.

I love Brady's aide. She is the most darling girl, and she really has a good rapport and relationship with him. He really really likes her. I really really like Brady's school - I think the people there really care about him and want him to succeed. But, I also feel like they don't really "get him" and they don't really see his potential and the things they can do to help him progress. I feel like sometimes they find it easier to stick with the status quo - not rock the boat - not expect more. Whether because it is more work to expect more - to modify assignments, to plan ahead of time, to follow-up, to have more meetings - or they don't want to deal with the initial fall out of pushing Brady to do more things - behaviors, non-compliance, he won't just sit there quietly - I'm not sure. When something isn't going exactly as expected (or discussed) and I get frustrated and talk to them about it - it always comes back when it gets changed to - are we doing what YOU want now, Brady's mom. That frustrates me - it's not that I want them doing everything my way - I just want Brady's team working on things in ways to teach him what he needs to know, in appropriate ways, in ways that will help him progress on the skill he is supposed to be learning. It shouldn't be what I want necessarily (I really am not trying to be demanding) - it should be what we, as a team, have decided, and what are best practices for teaching, research based, and followed through. Preferably not just researched by ME, but by everyone - with everyone wanting and believing that Brady can progress and learn and succeed. I do not have a degree in education - psychology is my bag - so I don't know what all is out there for people with disabilities. But I do have a computer, and so I spend time researching things - really - often all it takes is putting "modify curriculum for disabilities" into google and thousands of sites come up - lots of teacher boards etc... Sifting through it takes time - and effort - and desire - but there are some really good resources out there. I sometimes think that is what is missing - that people just look at Brady, see his disability, and think - well - this is good, he is happy, he is quiet, he is compliant with this - let's just keep doing it this way..... And - that is not okay with me - because we should be constantly working towards meeting and exceeding Brady's goals - why expect the bare minimum????

So - if you are reading - my goal for Brady is not necessarily compliance in all things. Sorry. I want him to obey the rules, I want him to be quiet and listening in class, I want him to be respectful of teachers, aides, therapists, other students - and if he isn't, I expect him to follow through and accept the consequences. BUT - I also want him to have a voice - and sometimes that voice will show in non-compliance - because he struggles so much with speech and language. If Brady just sits there all the time, and is happy, and does whatever you say - well - then you are expecting too little of him. I know him - when he is that way - it means he is getting everything his way - and he is MORE than happy for you to expect too little of him - because that is easy - and he likes easy :) The more he can get you to be happy with him doing the bare minimum, the happier he will be ;) He is no dummy - he knows how to work the system ;)

He knows to make himself scarce after school so he doesn't have to do homework right away. He knows how to make everyone serve him ;) He knows that if he is too slow eating his breakfast in the morning, someone will feed him because we are always in a hurry! He is a master of getting out of work. You just have to find the right motivator - and believe me - they are out there - but finding them - well - that is work. But so worth it ;)

Think Brady can't clean his room? Think again - he doesn't do it independently, and you have to remind him of the reinforcer when the going gets tough - but can he do it? His bed isn't perfect yet - and the books on the shelf are kind of stuffed in - but he CAN do it!!!! You bet..... Unload the dishwasher? Yup - he can do that too, and he even knows where all the dishes go. Write his first and last name? Yup - it ain't pretty - but he can do it. Read a C level reader - yup - sometimes it takes reminders of the reinforcer every couple of pages, and a lot of patience (sometimes 20 minutes worth of wanting to pull your hair out - but really he's just seeing who has more patience - so never NEVER let him see how frustrated this makes you - or you are doomed - and he WINS ;) Clean up messes he makes? Yup - he can do that too (but that usually requires a bit of thinking time in time out - oh wait? he gets time out? yup - that too). You get the picture - he can do it!!! So when I ask for homework for him and you want to send home one page with four problems on it for the entire week which he can complete in less than 10 minutes (wtg Nicole - he really does know how to do touch math for addition - I am sooo happy!!!!) that frustrates me, because I feel like you are saying he is not worth the extra work of putting together a packet each week, and that you don't want him to progress at a faster rate, or you don't believe that he can. We all need to BELIEVE!!!

We all need to change our mindset to Brady CAN and not Brady CAN'T. How can we know if Brady can't do something until we try? And if it doesn't work one way - let's try it three or four more ways until we find a way that he CAN! He is capable, not always willing, but he IS capable. He really does want to succeed at things - and it boosts his self-esteem and lights up his eyes so much when he accomplishes something and is recognized for it!!! Let's capitalize on that - that is all I am asking - and I know it is not just a little thing - it takes work, effort, desire, love, patience, and consistency - but in the end it is worth it. He is worth it!!!!!

And - more than that - he deserves it.