I signed up for this, I agreed to parent 2 boys who I knew had list of needs as long as my arm. You could say they were special needs, you could also say that they are just children who have needs, all children need things, and it is part of being a child.  Some children have fewer needs than others. Some children can remember a routine from day to day, they can learn in a way that makes similar to many of the other children around them, they can slow down and think before they speak and realise that their words might hurt the person they are saying them to.

My son Fudge needs help with all of those things.  He can not do things that other 8 year olds can do, he is unable to remember the order of a routine, he does not learn like everyone else, he does not think before he speaks and you can not see his disabilities until you get to know him.  We support him as best we can at home, we know what he needs and we do what we can to make sure he is successful. We do not get offended when he says something mean or hurtful; we discuss it and move on.  We understand that his brain does not work like ours and that is not his fault and he will eventually learn how to make things work for him.

Why is it then, that if I, an adult with a certain amount of experience in working with children can wrap my mind around his needs that it is so difficult for other adults with similar experiences to mine to understand his needs and work with him to make him successful?

Fudge is in 3^rd grade, he has a teacher who has more than 20 years of experience and she known to be great with tough and challenging kids. She was Calvin’s teacher last year and she managed him pretty well but she is not managing with Fudge at all. In fact she having a really hard time getting anywhere with him and she refuses to listen to any advice that I ( his primary caregiver and a fellow teacher) may have for her.

She says that she knows how to handle kids like Fudge in one breath and than calls me at night frustrated because Fudge is being impulsive and getting into trouble every time she turns her head. When I try to offer some suggestions or ideas about how we can work through this and support him she tells me that she has it under control, she just wants me to be informed. *

Well I am informed, I live with Fudge each and every day and I totally know what it is like to try to teach him anything. It is hard, frustrating and challenging. I get it, I hear you, I can help you out with this, if you will let me.

If you are having such a hard time would not be good idea to perhaps hear what works for him in other environments and at least give it a try. Maybe trying something new might work better than using the same old technique that is clearly not working with this child.

I am no expert but I am his mother and I have learned a lot about his mind works, I don’t know everything but I do know what doesn’t work because I have probably tried it. I am able to help him because I pay attention to his needs and try my best to make accommodations that work for him. It really isn’t that hard if you are willing to try new things and step outside of the box.

J. blogs at Stellar Parenting 101 where she talks about being a Mom to 2 fabulous boys while living in the great white north.

* Fudge does not yet have an IEP because we are waiting for some things to be formally identified before we go ahead with one. He receives a little extra support in the classroom but he is in a small class and everyone knows that he needs the help

Things are busy around here this month. There are parties and concerts, snow and hot chocolate. My kids are managing to stay amazingly well regulated so far - I have my fingers crossed that it continues. So instead of a reflective piece I thought I would share a few of the ways that we try to keep things moving along around here without everyone losing it.

Holidays bring a whole host of challenges and blessings for our children. They are wonderful events filled with joy and excitement and at the same time they are overwhelming, over stimulating and full of new and unfamiliar things - a recipe for disaster at our house. Here are some things that we do to try to keep things as normal as possible while enjoying the holiday season.

• Keep traditions the same from year to year, it gives the children something to look forward to and creates some predictability. We put out Christmas tree as close to December 6th as possible. We go and cut it and then put it up all in the same day. We skip school and make a day of it.
• Use a calendar  to keep track of days. We have an advent calendar with daily messages and a toy inside, it helps the boys keep track of the days and gives them something to look forward to each morning.
• Bring a favourite game, book or activity to a party or outing. I try to settle my kids with a game if I see that they are getting overwhelmed by the people or event itself. There is often another child or adult who would like to play as well and so it works really well.
• Remember the need for down time. I try to make sure that events out are followed by a day at home just to be together if possible. If not I try to make sure that I do not have to many expectations for whatever down time we can find.
• Remind family and friends of what your child needs or may not need, sometimes people who only see children at holidays  do not realise how much things change over a number of months.
• Remember what tired and over stimulated feels like and put on your patient pants ( mine are hard to find some days!) Holidays are hard for everyone especially for kids, our kids are no exception.
• Sometimes taking the boys outside for awhile helps to calm things down, a change of air and scenery can go a long way to making something more successful.
• Talk to your kids about the holidays and give them some control/choices about activities. Perhaps someone is desperate to go to the pool or make gingerbread and those are not things that you had planned. Avoid the crisis and talk about expectations ahead of time.

 Whatever you celebrate remember that it is time to be together and enjoy one another. Make the best memories you can and don't sweat the small stuff because there is not enough time.

J. also writes at Stellar Parenting 101 where she rambles about being a Mom and other things that amuse her

Yesterday while my partner and I were purging some of our huge book collection and he pulled out an old university textbook, a book I have not thought about for a long time but seeing it got me thinking about the intersection of the book topic with my life today.

In my 4^th year of University I took Social and Political Ethics, it was not really a class that I wanted to take, the content did not really interest me but I needed another Ethics class and it fit into my very complicated schedule. The most memorable moment that semester was that the first class was on 9/11, we stayed 10 minutes, got the syllabus and headed out to go back to the TV’s to which we were all glued for the rest of the day.  The semester went on, I learned things I didn’t know anything about and I began to questions many of the intersections between social policy and political ethics. I began to learn that things were not always as straight forward as they seemed and that at 23 I still had a lot to learn about how the world worked.

So what does this have to do with parenting, why am I rambling on about a class in university that I didn’t really like?  Where is the intersection with parenting? I mean besides the fact that I still have a lot to learn about being a parent and it is not always all that I thought it would be.

Someone needs to write a thesis on the social and political ethics of being a parent of a special needs child, a child who may not understand the consequences of their choices. I constantly find myself stuck between a rock and hard place when talking to others about my kids and the choices they make.

 There are so many fine lines between being an advocate and being overprotective, between helping out and helping up, sometimes I feel as though I have no idea which side of the line I should be on. I try my best but there is so much to learn and what I think is right or appropriate is forbidden in someone else’s eyes.  I do not think that I am the only one who struggles with this but yet it is not something that we talk about.

Fudge recently got in trouble for stealing, someone brought a Nintendo DS to school and was playing it at recess. Fudge asked for a turn and don’t get one.  Fudge decided to take matters into his own hands and took the DS so that he could have a turn. He got caught and busted for stealing. His teacher berated him for stealing at school,  as did we when he got home because we were sure that was what had happened.  I mean he told us the truth and it was obvious that he had intent and followed through on what he wanted, if only it was that easy.

I later heard from his therapist, who witnessed the event that indeed that was not the case. Fudge took the DS but it wasn’t really stealing, not in his eyes. In his eyes the other child was being unfair, he wanted a turn and so he took one, end of story. He did not believe that he was wrong, instead that the other child was wrong for not sharing. I think that if he had not been caught he would have returned the DS after he had a turn, his goal was not to keep it just to have a turn.

My friends with neurotypical kids thought that Fudge got off easy, that his consequence ( no Halloween candy but he did enjoy the chips and wrote and apology letter)  was not extreme enough to prevent him from doing it again. Where as other friends thought that we were too harsh and that we should have been more forgiving given that he is not neurotypical.

 It is an ethical dilemma that has all sorts of implications for Fudge but at the center of all the implications is a little boy who really just thought that someone was being unfair.  As his Mom I now struggle with how to help him through this one, how to guide along the fine line of what is right and wrong, through the gray areas that I am only beginning to understand myself. Yes stealing is wrong but borrowing is different, you need to ask, you need to listen, yes sometimes other kids don’t share... The list goes on and at the end of the day I struggle with how to help him and how to navigate the fine line that I find myself walking as well.

I am hopeful that I can learn to walk this line with some grace and accuracy, wish me luck.

J can also be found at Stellar Parenting, where she talks about her imperfections and life with 2 boys.

P. meets Fudge in the upstairs hallway, “Morning Fudge, what’s for breakfast?”

Fudge replies, “In the downstairs restaurant we are having Eggo’s”

Around our house we would refer to that little exchange as a “Fudgism”. A Fudgism is something that would only occur to Fudge to say, they are usually quirky and often funny. We also refer to “Fudging” which is when Fudge does something that would seem insane to the rest of us but totally makes sense to him. Like when he decided that moving large rocks out of the rock wall ( where they  are cemented together) to look for bugs would be a good idea because you can often find bugs under rocks on the ground, so why not in a stone wall.

Fudge is a great kid, (he tries my patience on a daily basis lately) he is a little boy who loves books, lego and anything electronic. He is developing quiet an ear for music and is eager to help others. He is generally a pretty great kid to be around even though he is challenged on daily basis by his disabilities.

I have been challenged lately with what to say to him about his struggles, I want to make it easier for him, I want him to understand that it is not his fault that he has poor impulse control or trouble remembering things from one moment to the next.  I want him to know that even though things are hard for him it is not anything that he is doing wrong, it is just the way it is and we will help him learn to make things work for him.

 But what do I say?

Well Fudge, I am sorry that things are so hard for you, it’s because your birth mom didn’t care enough to take of you while you were growing in her body. When you were born she continued to neglect you and in affected the way your brain grew. You will struggle for your disabilities for the  rest of your life because she made a lot a bad choices.

Or how about this one

Well Fudge it really sucks to be you doesn’t it. See from the moment you were conceived your birth mom ignored all the people around her who told her not to drink was she was pregnant. When you were born you were sick a lot and she didn't take care of you so she left you alone or with neighbours. Your brain was hurt by the alcohol and by the lack of attention you received as a baby. Then you came into the foster care system and bounced around for 3 years before you ended up here and that added to your problems.

Or

Hey Fudge, I know you are having a really hard time at school and with friends. Just remember that none of this is your fault. Your birth mom drank and broke your brain and now everything will be hard for you, so next time you are frustrated just remember that and when you are big you can find her and tell her how mad you are at her for her bad choices.

See my dilemma, I can’t say any of those things to him and yet they are the truth, they are the reason he is having such a hard time.

How do I explain to 8 year old that someone else’s bad choices have made his life harder. That her inability to take care of him made him the way he is. I know all the age appropriate stuff to say but there comes a point when the truth is what is needed and as that day draws closer I wonder how I am going to handle it.

J. has recently started a new blog Stellar Parenting 101 where she rambles about the struggles of being a Mom to 2 fabulous boys.

Why is it that when children have a disease like diabetes adults understandthat there may be some things that will be difficult for them to do. Adults understand that they may need to make accommodations for the child in order for them to participate in activities with other kids. It's not a big a deal, it's not childs fault, it's just the world they live in and we as adults need to accommodate their needs. We don't punish  them for going into insulin shock when they have forgotten to eat, they are children, they are learning how to live with their disease and as they grow it will be easier for them.

Why is it then, that this understanding can not be extended to children who have other diseases. Things over which the child has no control, things which cause the child to behave or act in a way that requires adults to make accommodations for them and yet they are so unwilling to do so.

Why is it that adults judge and ridicule my children for things that they do. My children whose brain development has been affected by choices that their biological mother made. It was not their choice, they did not choose this path, they did not ask to have poor impulse control or to have anxiety attacks. They have done nothing wrong, they are children affected by diseases that could of been prevented and yet the adults around them constantly judge them to be bad children because they are learning to live with their diseases.

Why is it that when I defend my children and try to teach others how to help them I am met with resistance. It makes me sad to see my children shunned by other kids, kids whose parents have said don't play with those boys. Would it be so hard to teach compassion instead of exclusion to their kids?