Thursday, October 16, 2014

The Insanity in My Head

I'm not even really sure where to start with this question and really its a whole bundle of questions that doesn't get tied up with a nice bow.   You'll have to forgive me if I don't make much sense.  I've been thinking a lot lately about why I care so much about what type of classroom Riley is in at school.

We have pushed and pushed Riley from day one.  Seriously the hospital OT or PT saw him in the NICU.  Then we started at the Guilds School and then on to private OT, PT, Speech and tutors.  All for what?  Riley's happiness?  I'm not so sure he is happier than he would be if we hadn't done all of those things.  He's happiest when he is with his brother or his friends.  None of these activities have given him his hysterical sense of humor that we all love so much.

So are we pushing and pushing for us?  Am I the one that cares too much about what stinking room he is in and who he is allowed to be with in class?  If he gets moved to a different room that is more self contained is it really going to stunt his happiness and prevent him from making friends?  Could we just over compensate with extra curricular activities and make sure he stays social that way?

They often tell us he does so much better work in small groups and one on one situations.  I am sure most kids would.  Seriously isn't the entire issue with classroom size...the bigger the class the bigger the distractions. Are we slowing down his academic progress by insisting he spend a large chunk of his day in a general education classroom.

 Riley has trouble transitioning from one activity to another.  Sometimes he just needs more time.   Sometimes he is just a stinker.  He knows when it is time to line up from recess.  He knows what is expected of him and yet he chooses to keep doing the activity that makes him happy.  No matter what classroom he is in he'll need to learn to come in from recess.

Riley is just about to turn 8.  He doesn't have the ability to make choices that impact his future.  His hold world is about immediate happiness.  Listening to his teacher doesn't often bring him immediate happiness so often he doesn't choose to listen to her.  I know that while doing math today doesn't make him happy it will ensure that at some point in the future he is capable of managing a bank account and budget so he can live independently.  Is that more or less important that learning to act appropriately in a social situation, or learning to make friends with new classmates.

I'm tired of having to work so hard to convince people that my child is capable and worth the extra effort it takes for him to be part of the group.  That seems to really be the core of all of this...  he deserves to be treated like a kid with potential not a kid that needs to be kept separate from other kids.   Every child deserves that.  Every child deserves to know a kiddo like Riley that sees and navigates the world a bit differently.  I don't think that the message it sends to the kids left behind in that general education classroom is considered.  "Don't act different kids...they will send you away."  They also see how the adults interact with Riley when he is in class.  So many life lessons area taught to all the kids in such a subtle way.  They see when everyone is treated with respect and they also see when every one is not an integral  part of a classroom.

OK I'll stop talking these circles.  These are complicated issues and they confused me daily.  So if you have a crystal ball let me far to do you push and when do you just throw in the towel and take the easy road.


  1. Mary,
    You are pushing him because you know just what he is capable of. You know that he can strive if given the correct opportunities. And not just the ones that society says are correct, but the ones that are correct for him. It seems hard because you are doing the right thing for your beautifully wonderful amazing boy. Every kid, if given the chance, will work better in a small group or one on one setting, why do you think class sizes matter so much? You are just doing whats best for him, and although it seems hard right now. I have no doubt that Riley will succeed.

  2. Mary, I don't know what is best for Riley so please don't take my words as "advice" - but it may help you to know that Stephanie was sent to the principal's office 42 times between September and November of her first grade year - yes, that is right . . . 42 times. Not coming in from recess was one of the big issues that year. Finally, after they tried to move her to a different school, in a DI class and I said "NO", they brought in someone to look at behavior who said basically WTF?? Overall, first grade was awful, all around. I battled the school, her teachers, the principal (who had a sister with DS) and literally had my hair turn gray. I hired a lawyer and worked, worked, worked with her. I wondered several of the same things you are. . . 2nd through 7th grade was great though, and I can tell you know that her academic skills are well above the other two kids with DS who were in IK with her, all her good friends are from her gen ed classes and she is appreciated and loved by almost all who know her. She doesn't learn all the material, and that is why the district is fighting me so hard now, but she learns more than she would in the DI class (by a lot, I would argue) and she is growing up as a valued member of her community at school (except for a few jerky teachers). I'm sorry you are struggling, and that Riley is too right now. . .Good luck and call anytime if you want to chat.

    Your mama's heart will lead you - and I don't pretend to know what is right for every child, but for my child (now young adult) - despite the tears, struggle, pushing (of adults, primarily) and sometimes overwhelming homework, I know it has been right for her and I'm glad I didn't allow my discouragement to change my path. Times were very hard, but maybe working in DI rooms increased my certainty about what I didn't want and it helped me stay my course.

    1. Thank you!! It really is so encouraging to hear from parents like you who have been there and continue to fight. I'm not so sure I have the endurance you do but you are inspiring. Its also good to see Stephanie now and hear about how she was when she was Riley's age. There really is light at the end of the tunnel.

  3. You need to do what is right for your son at this time and to think a year at a time. Inclusion is not the best choice for every student in every school, even though the other students benefit from having him in the classroom. Much depends on the child's learning style and the ability of the both the school and the teacher to integrate the child into the classroom. Some kids can't learn as well in the chaos of a typical classroom or participate in group projects. If he is only working with his aide or is the kid that is always causing the teacher to pause and re-direct, that is not real inclusion. It may be because the class is not set up correctly, as the commenter above experienced, or it may because it is not the right setting for Riley.

    Either choice has positives and negatives. Everyone has to make educational choices for their kids, but they are not as obvious: public (free) vs private (costly but smaller classes) or weighing the cost of housing vs the quality of the schools. For a kid with special needs, the choices are more difficult and set forth in the IEP.

    Perhaps ask for an unbiased educational consultant to observe Riley in the classroom and come up with recommendations. Perhaps you could even hire someone that is not affiliated with the district to give honest recommendations as to which setting is most appropriate and how to make that setting work for Riley. It is so hard to make these choices and you are really doing the best you can.

  4. My son with Ds is only 1 year old, so I have no advice. But, I have stories from the other son, my kindergartener, who is a typical kid in an inclusive classroom. He is fascinated by the different learning plans and different discipline plans he sees his classmates working on. We talk often at home about how everyone is working on learning something--and I think these experiences help him learn about diversity in the world but also help him better understand what he is working on learning right now. When other kids in his class have a good day -- behaving better than normal, remembering letters or words they didn't before, etc, -- he comes home excited for them. It is certainly not your son's responsibility to teach my son about disability, and of course you must watch your own child and do what is best for him. But as long as he is in the mainstream class, know that the disruptions & frustrations that you might be hearing about from the teachers are not disturbing the class. They are teaching his classmates to take pride in their individual accomplishments, whatever each might be learning. And he is teaching his classmates to grow up to be the sort of people who will take a chance befriending a person with Down syndrome. It isn't about pushing him to keep up, it's about pushing for a place for him to belong.

    1. Thank you Katie. It has been a very challenging start to the school year and its nice to hear from parents and be reminded of exactly why we spend so much energy making sure our kids do have the opportunity to belong.

  5. Mary,

    Kids like Riley and Rex are lucky to have an involved, interesting, caring parent. Basically what you're doing is trying to help your kids succeed. The definition of success varies by child but at the end of the day what you, and all of us are doing is trying to help set them on the right path. My kids often resisted our direction and pushing. I certainly often wondered if my involvement made a speck of difference and I certainly had enough to do without being there 24x7. Mine kids are adults now and as I look at these young, well-adjusted men I can't help but believe part of the reason they are where they are is because of that involvement and pushing. In my opinion, most kids have their own agenda, at all ages, and part of their "job" is to push the boundaries. That is how they learn.

    Don't be too hard on yourself and don't second guess yourself. Riley is lucky to have you. Keep pushing. It is worth it.

    For what it is worth, one of my boys has ADHD. We sent him to tutors, lots of doctors, special diets, etc. I worried he'd never graduate high school let alone go to college. He has done both and is now the big reader in our family, when I worried at times that he'd be stuck at a third grade level for life.

    Have faith! Our kids, even special kids like Riley, have their place in life and their own path. He was given to you because God knows you are the right person to help him find his place, be happy, and positively influence others.


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