The February Dive

Just a word of caution: the grades of kids on the spectrum (and other kids with organizational difficulties) tend to dip this time of year.

During the first few months of school, we are focused on getting a good start to the new year – students, teachers and parents alike.  We’re all on the lookout for difficulties.  Teachers know they’re going to have to help students adapt to their new classroom.  The kids are doing their best to live up to the new expectations placed on them, from social demands, to learning how their classroom works, keeping their work organized and turning it in on time, and keeping their cool as best they can.  Parents are on top of homework and schoolwork, are working with teachers to solve problems, and are trying to keep everyone’s emotions in check, including their own.  All parties involved are on their toes, trying to make this school year work.

For most kids things tend to calm down a bit over the next few months.  They learn the ropes in the new classroom and come up with some strategies to help them survive the worst of the day.  Parents and teachers have adapted school and family life where they can and have established some sort of working relationship, (some work better than others.)  Homework routines are in place, parents and teachers are monitoring them diligently, and things kind of pull together.

Then the holidays arrive.  Suddenly, all the adults have a lot of things other than the kids to think about.  There are holiday programs, gifts to buy, cookies to bake, parties to arrange, decorations to be plastered over classrooms and homes, and holiday vacations to arrange.  School is still a priority – older kids have finals to take, and teachers are still trying to cram in as much learning as they can, but there’s a lot of pressure and stress on the adults who are trying to do everything they normally do plus the holidays, too.  It’s hard on them and their brains tend to melt a little around this time. 

Fortunately, winter break arrives.  Parents and teachers can ignore school for awhile and concentrate on the rest of their lives.  Kids are cut loose.  They may have family commitments they have to meet, but for the most part the adults are so busy that the kids get a lot of free time.  They get to relax, put in a few too many hours on video games, and do what they want for a change.  Life is good.

The holidays come and go.  The adults, exhausted by the demands of the holidays, crash into a heap of exhaustion.  They are tired.  Most of the women go into a brief coma.  The men enjoy the peace and quiet.  Again, the kids are getting a lot of free time and they’re okay with that.

Unfortunately, all good things come to an end and winter break does, too.  Teachers go back to work.  Parents peel their kids off the front of their computer and TV screens and throw them on the school bus.  The adults are ready for life to get back to normal.  The kids, however, are not.

Going back to school in January is not like starting a new school year in the fall.  The kids have had enough time off to get out of the school routine, but not enough time away from the classroom to build up that “new school year” energy.  It’s only been two weeks.  They still remember that school means a lot of work.  They know that extra video game time is ending and a bunch of drudgery is beginning.  Even the most dedicated kids can be a bit slow moving when it comes to school work in January.  They may not get all their homework turned in.  They may not study for tests as much.  This is a time of year when our kids aren’t at their best organization-wise, and it shows.  Their grades start to dip.

Parents and teachers don’t always catch the downslide.  They’re often not monitoring the kids quite so closely this time of year.  Things were going well in the fall and the kid didn’t need extra oversight then, so they assume he doesn’t need it now either.  It’s not until progress reports come out in February that everyone realizes there’s a problem.  Junior’s (or Junioress’) grades have taken a bit of a tumble.

If you’re like most mothers, this is when your guilt goes into overdrive.  You stand there, looking at your child’s progress report, and realize that you’re the worst parent in the whole world.  You’ve ignored your child and this is the result.  All his carefully nurtured organizational skills and homework routines are in shambles and it’s all your fault because you didn’t love him enough to monitor his homework as carefully as you should have.  He would be looking at a life of flipping burgers except since his social skills aren’t that great and he can’t handle noise, he won’t be able to hold even that job, so as a result he will starve to death. 

(Note that I said “like most mothers”.  From what I can gather, fathers just thump the kid on the back of the head and tell him to do his darn work, then come up with ways to make sure he does.  They seem to move from recognizing there’s a problem to coming up with a solution without spending near as much time in the “Oh my God, I’ve ruined my child!” stage as we mothers do.  There’s a lesson for us there, moms.)

February is often no fun.  We figure out that our kid needs help getting back on track and we knuckle down to it.  We spend March (and sometimes a lot of spring break) getting him caught up with school work, and the rest of the school year getting his grades pulled back up to acceptable levels.  Our guilt gets worn back down to normal levels (to where we think our child may just succeed in life even though he was blessed with a totally incompetent parent) and we make a final dash for the finish line and summer vacation.

Here’s a tip, from someone who’s been through this cycle many, many times.  Even if your child did really well last November and December, check his homework for the next month or so.  Make sure he’s writing down all his assignments and actually turning them in.  If he got to the point last fall that he didn’t needed your help studying for tests, double check his knowledge anyway.  It’s worth the twenty minutes it takes to run through his spelling words or to ask him questions from his study guide.  If you’ve got any doubts on how he’s performing at school, drop a note or make a visit to his teacher.  The effort it takes to help him get a strong start back to school in January is a lot less than the time, energy and tears you’d both spend getting his grades back up after they plummet. 

It might also free up some of your Spring Break, too.  That way you’ll have more time to nag your child to quit spending so many hours glued to video games, and enough room on your brain circuits to handle most moms’ other big worry that time of the year.  Yup, the dreaded “oh-my-goodness, bathing-suit-season-is-right-around-the-corner-and-I-haven’t-exercised-in-the-last-six-months” guilt.  Sorry, I’ve got no good ideas on how to help us all through that one. 

– Cassie

PS. If you think this post is helpful, pass it on to someone else.

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Rights and Wrongs

As parents of kids with autism, we spend a lot of time talking about our children’s rights.   “It’s my son’s right to a free and appropriate education.”  “It’s my daughter’s right to be fully included in a general education class.”  “Be sure you get a lawyer so the school doesn’t trample your child’s rights.”  Search the internet for the words “autism” and “rights” and you’ll be flooded with results.  We spend a lot of bandwidth learning about our children’s rights and how to protect them, as we should.  But why do we rarely hear parents of autistic children talk about the rights of kids who don’t have disabilities?

For instance, I’ve heard parents say, “My child has difficulties with auditory processing, so he needs assistive technology.”  But I’ve never heard, “My child screams so much in the classroom that the other students can’t hear the teacher and it’s affecting their education.”

Frequently parents tell me, “The school needs to implement a behavior plan so my child learns how to use his words instead of hitting.”  Only twice have I heard, “How can we stop my child from hitting other kids?  They shouldn’t be afraid to come to school.”

I’ve heard, “The teacher isn’t helping my child enough,” but not, “If my child is taking up 35% of the teacher’s time, how are the other children getting the attention they need?”

I’ve even seen, “My child has special needs.  She should be on the cheerleading squad even if she isn’t as good as the other girls.”  I don’t think that mom ever thought, “There are only six cheerleaders at our school.  If I insist my daughter is on the team, is she depriving another girl who deserves to be there because of her abilities?”

Note that I’m not talking about when the other kids in a classroom have to suffer inconveniences so that our children can be there.  Not being able to take a peanut butter sandwich to school because another child might die is not a huge sacrifice.  No one has the right to put someone’s life in danger just because their parents can’t figure out something else to put in their lunchbox.  If a child disrupts the classroom occasionally or the disruptions are mild and manageable, the rest of the students can learn to ignore it and move on.  No, what I’m talking about is when the accommodation of our children means other kids are harmed.

The rights of individuals with disabilities are precious, necessary and just as unalienable as those of people without disabilities.  We fought long and hard to ensure that those with special needs have as equal access to the benefits of our society as we can provide.  If we parents don’t defend the rights of our disabled children, our children will lose out.  

But should other people’s children be made to suffer so that our children benefit?  Are children with disabilities the only ones who have rights?  Is one six year old less of a person than another?  

Parents of typical children are expanding their viewpoints and insisting that all children are important, valuable and to be protected, even those with disabilities.  Surely, we parents of kids with special needs can do the same.

– Cassie

PS. If you think this post is helpful, pass it on to someone else.

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Social Expectations

 I don’t know why it’s so hard for me to remember that my goal is to teach my child how to socialize with other people so that when he wants to or needs to, he can.   It is not, nor can it be, to have him socialize as much as I want him to.

My son enjoys his solitude.  He likes being on the computer and reading interesting facts.  His interaction with his siblings and parents satisfy most of his social needs.  He has a few friends that he occasionally spends time with and that’s enough for him.  He’s happy.

His social skills are enough that he can navigate high school.  He can go to the movies, buy something at a store, and interact politely with people in the community.  He has enough social skills to meet his immediate needs.

So why do I keep pushing him to do more?

Because I want him to be safe.  I want him to be able to tell when someone is lying or taking advantage of him.  I want him to know when a girl is receptive to his romantic interests and when to leave her alone.  I want him to be able to spot a bad relationship or friendship and know how to avoid them.  I want him to be loved, have friends and not be lonely.  I don’t want him to be hurt, not ever.  But that’s not realistic.

The fact is, our children are going to get hurt.  Our children with special needs will get hurt and our typical children will, too.  They’re going to get dumped, broken hearted, cheated out of money, and maybe even beat up.  That’s a sad fact of life.  It’s part of growing up.  All we can do, as parents and teachers, is try to teach them how to make the best decisions they can and what to do when they make mistakes.  We can teach them to try to figure out why they made a mistake and how to avoid making it again.  All we can do is try to teach them how to learn as they go along, just like we do, just like everyone does.  The fact that they’re starting with less skills than other people is regrettable, but it’s something we can’t change.  All we can do is move forward from where they are now.  But in the process, we have to try not to make them miserable.

So, the question is: when do I push my son to be more social and when do I leave him alone?  When do I accept that this is who he is?  After all, if I continually push him into social situations that he doesn’t want, I’m not letting him learn to make his own social decisions – who to hang out with and when, also an important skill.  I don’t want him to believe that he has to stay in the company of people he doesn’t want to be around.

Generally my solution is a compromise.  I insist that he participate for a while in particular social activities, then when that time is up, allow him to choose when to leave.  Sometimes he stays; sometimes he goes.  That way he has the opportunity to learn whatever social skills he will from the engagement, but he’s not continually forced into situations where he’s uncomfortable or downright miserable. 

The trick to this, is for me to remember that when he wants to leave, I have to let him leave.  And I have to be okay with that.  I have to remember that what I like may not be what he likes.  I have to not be unhappy because he’s choosing solitude over society.  I have to give him the dignity of making his own social choices and allow him to develop the skills to do it. 

And my fears for his safety and happiness?  I guess I have to deal with them just like most other parents do.  A lot of hope, a little delusion, and lending a hand when he needs it.

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Tips for Parents on Surviving Your Next Parent/Teacher Conference

Quick question — what scares you more?  Parent/teacher conferences or root canals?  It can be a hard choice.  Both can be excruciating, though with one of them you get great drugs to help deal with the pain.  True, a root canal may leave you looking like a drooling, swollen chipmunk for a while, but will crying for three days straight leave you looking any better?  When you get down to it, both are good and necessary but neither is much fun.  The big difference between them is that though there’s not a lot we can do to make invasive dental surgery more comfortable, how we approach conversations with the school can make parent/teacher conferences a lot less painful and much more useful.  Here are some of the things we can do to improve our time spent sitting across the table from teachers.

  1. Relax.  No one is judging you or your child.  The point of parent/teacher conferences is to discuss your child’s difficulties and how to address them.  Before you and the school can figure out how to help your child, you have to agree on where he’s struggling. 
  2. If the school says your child is having a hard time, they’re not giving up on him.  They’re also not telling you to go home and fix him.  They’re keeping you informed so that together you can come up with a plan to help him.
  3. Just like any other place of business, schools use a lot of jargon.  If they use terms or abbreviations, or refer to programs that you’re not familiar with, ask them to explain what they mean.  They’re not trying to be confusing or condescending – they just forget that not everyone is as familiar with their school as they are.
  4. Take a list of any concerns you might have to the meeting.  Sometimes it’s hard to remember everything you want to talk about.  If the teacher doesn’t have time to go over the whole list with you during the meeting, schedule a time when you can meet again.
  5. Sometimes when we get negative information about our child, our attention diverts to dealing with the information instead of what’s happening at the meeting.  Our brain can start to spin-out and we don’t listen and respond as well as we’d like.  It can help to focus on just getting the information from the teacher at this meeting.  Then you can go home, think about it – whether you agree or disagree, decide what you think should happen next, and when you’re ready, schedule another meeting with the teacher so you can discuss it more and come up with a plan of action.
  6. If the teacher says your child is struggling in a particular area, ask her how he’s doing compared to the rest of her students.  Regardless of how other kids are doing, your child needs help, but if a lot of other kids are also having difficulty, you’ll know that your child isn’t seriously behind.
  7. If the teacher says your child is having a hard time with something, ask if this is a big problem or a little problem.  Some teachers don’t tell parents about little problems, preferring to take care of them themselves inside the classroom.  Other teachers tell parents about all difficulties because they’re trying to keep parents informed.  Knowing what are big problems and what are little helps parents prioritize their efforts and keeps them from stressing out over little things. 
  8. Also, be sure to ask the teacher why your child is doing poorly.  For example, if he’s failing math, is it because of his homework?  If so, is he not turning in his homework?  Is he forgetting to write down the assignment or check his assignment schedule?  If so, he needs help on his organizational skills.  Or is he not doing the homework because he doesn’t understand how to do it?  Then he might need tutoring.  Or is he doing his homework but not doing it the way the teacher wants him to, like not showing how he solved math equations?  Pinpoint the specific causes of his difficulties so you can address them.
  9. There are a lot of ways parents can help their child at home.  Make good use of your child’s teacher’s experience – ask her how you can help your child with his homework and how to improve his skills.  She can help you figure out how to get the most out of your efforts at home.  Resource and special education teachers are also sometimes willing to answer your questions, even if your child isn’t in their classes.
  10. Teachers generally are very willing to communicate with you throughout the year.  They don’t always have time to meet with you if you just drop in, but if you schedule an appointment with them, they’re very available.
  11. Remember your child’s strengths as well.  Don’t just focus on his weaknesses and difficulties.  Every child has difficulties in one area or another.  Negative information your child’s teacher gives you is the starting point for helping your child improve – it’s not a pronouncement of doom.  Take a few minutes after your meeting to remind yourself of your child’s great qualities.  You guys are going to get through this.
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How Not To Get Trolled On A Video Game (Tell Your Kids)

The below is written by my beautiful, talented teen-aged daughter, Fang Zupke.  Yes, “Fang” is a pseudonym that she picked out herself, and no, we don’t need family counseling but thanks for the suggestion.

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I thought this would be a good time to talk about trolls in online gaming, since I know sometimes people get picked on in the games. You guys and gals, pass this on to your younger siblings, or any other kids you know, and parents looking at this, make sure to tell your kids about it. You don’t want them ending up getting trolled.

First off, let me make this clear: If you’re not old enough to be playing the game, then /don’t/ play the game. I can’t stress this enough; if you’re an eleven year old playing TF2, you shouldn’t be there. And you’re going to get trolled for it.

A troll is a person on the internet who tries to get a reaction out of people by doing various things. Sometimes it’s by breaking the rules in the game, sometimes it’s getting on your case about something else. Not to be confused with someone who’s actually trying to help, or is just doing something relatively harmless that you don’t like. But not to worry! I have a few tips that can help you avoid getting trolled:

1. Don’t use a mic. It keeps you from saying anything embarrassing, and it also keeps trolls from giving you a hard time about your voice.

2. Be polite. If you’re rude and yell at your teammates, or yell over other things in game, there’s a word for that. ‘Butthurt’. You’ll get it thrown at you a lot, and it attracts trolls. Trust me, you don’t want that.

3. Don’t complain. If someone’s breaking the rules, ask them politely to stop. If they don’t, let the admin deal with them. There’s not really anything else you can do.

4. Try to stay positive. Sometimes trolling is just a few guys having fun instead of trying to be mean. You can try to have fun, too. And staying positive means not letting them get to you and giving them the reaction they want. They /want/ you to get angry, and they want you to yell and threaten! Don’t give them that.

5. If all else fails, then leave. Just leave the server, and avoid the person or people who are trolling. They’ll say you’re ‘rage quitting’, but really, it’s the quickest way to defuse the situation on your end. If they follow you, then just keep going, and report them.

Hope I could help some.

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Booting The Aide To The Curb

Last year my son got As on his report card.  This year he’s barely holding on to Bs.  I couldn’t be happier.

Last year my son had an aide who was a very nice lady.  She helped him write down his assignments.  She reminded him to turn in his homework.  She took notes for him when he was too tired.  She was a fantastic aide, who through absolutely no fault of her own, was perpetuating his dependence on her.  At one time she was very necessary, but by the end of last year I’d decided her help was now a hindrance.

So, this year, we let her go.  We cut my son loose and tossed him out of the boat to sink or swim in the mainstream world with no support (other than incredible teachers, an ever-watchful case carrier, an understanding school administration, and a nervous mother who checked his backpack each day.)

Guess what?  He’s doing fine.  He’s doing more than fine.  He’s keeping track of his assignments, getting his work turned in, asking questions in class and managing all his school responsibilities himself.  Is he doing as well as he was last year with the aide’s help?  No.  He’s doing better.  His GPA is suffering, but he’s learning independence in leaps and bounds.  Now I know that in a few years when high school ends, he’s going to be able to make through college, where there are no aides and no IEPs.  I know he’s going to be able one day to hold down a job, where they’re not going to allow his mommy to come in and check up on him each day.

Our experiment has been a success, but if my son had crashed and burned, that would have been okay, too.  The school was ready to supply an aide if it turned out he still needed it.  Whatever damage would have been done to his grades, he’d have survived it.  We’d have learned what help he still needed and what he could do on his own.  We’d have known that we were pushing him to reach his potential as quickly as we could, that we weren’t coddling him into a lifetime of dependency.

Goodbye, sweet aide.  You’ve served us well.  Thank you for getting him ready to make it on his own.

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October Is Rough

October is often a rough time for our kids.  The honeymoon time from the beginning of the school year is over.  The teachers are calling you about difficulties your child is having in class or with the results of assessment tests.  Kids are tired of keeping it together in the classroom.  Everyone expects that our kids must have the classroom routine down by now, but maybe they don’t. 

I just want you to know that if your child is hitting a rough patch right now, you’re not alone.  A lot of our kids do.  Hang in there, work with the teachers, get more info, cry a bit, don’t argue with your spouse because it won’t help instead go out on a date with him/her, give your kid a lot of hugs, cut yourself some slack, and quit worrying about the fact that the holidays are just around the corner.  Relax.  Breathe.  Do something fun.

By Christmas your kid will have settled down in class.  (He’ll have to readjust after vacation, but that’s normal, too.)  Sometimes we just have to live through October.

 

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Bullies Lie

Two important things I learned while listening to Jennifer McIlwee Myers presentation about depression, anxiety and kids on the spectrum are “Every day that you survive, you win against the bullies,” and “Depression lies.”  Two very important concepts that when I thought about them later, led me to a conclusion that would have been really helpful for me to know in fifth grade.  Bullies lie, too.

Bullies feed off their victim’s pain.  They revel in the power they have over other people, the friends who follow them blindly as well as those they’re tormenting.  By throwing people out of the group, they shore up the walls that divide the “in crowd” and the “out crowd”, and build up their vision of themselves and where they think they fit in society.  The fact that they can make someone cry proves (in their eyes) that they have control and power.  They love the feeling and they have no problem doing whatever it takes to keep generating that feeling, including lying.

I don’t know why it didn’t dawn on me when I was a child that just because someone (who I knew was mean) told me I was fat or ugly, that it didn’t mean I was fat or ugly.  That they would say something, not because it was true, but because they knew it would hurt.  That they would say anything to cause people pain.  That they would poke around until they found someone’s tender spot, and once they found it, would strike again and again like a cobra, precisely where they knew it would hurt the most.  By triggering the victim’s own self-doubt, he’d keep punishing himself, over and over, long after the bully had sauntered away smirking.

Let me reiterate – bullies will say or do whatever it takes to get you to doubt yourself.  They want to see your pain.

So how does knowing that affect what we teach our kids about protecting themselves against bullies?

We need to tell them that bullies are manipulative, lying jerks who are really good at what they do.  You don’t believe them.  You don’t take what they’re saying to heart.  You do whatever you have to do to get away from them, and then you disregard what they’ve said.  That’s not the same as ignoring the bullies – advice that has been handed down since time began and doesn’t work any better now than it did when we were kids.  You can’t tell a kid to ignore someone’s taunts if he or she believes they might be true.  If one of the tallest kids in a class is being teased about being short, he’s going to think his tormentor is an idiot.  But if he’s teased about being too tall, he may buy into it.  Instead we have to teach our kids that bullies will pick at us until they find the things that hurt us most, and that’s what they’ll attack us with, even if they have to make something up.

Schools and parents are putting a lot of effort into anti-bullying programs these days and that’s a good thing.  The programs are having an effect and the number of bullying incidences are decreasing.  But the programs aren’t going to make bullying disappear.  Bullying is an ugly aspect of human nature, and it’s never going to go away.  As parents and teachers, we have to teach our kids more than “be nice to each other” and “tell a teacher.”  We also need to teach them resiliency.  We need to give them the tools so that when bullying does occur, as it will, they can survive it.  They can let those hateful words slide right on past them instead of letting those nasty little swords hit them where they live.

Bullies lie.  Make sure your kids know it.

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Things Kids with Asperger’s/HF Autism Say (That Typical Kids Do, Too)

Our kids may have autism, but they’re not aliens.  They’re human.  They feel all the same emotions, follow roughly the same developmental path, and try all the same ways to influence their parents as other kids do.  And like typical kids, they can be pretty vocal when expressing their feelings.

“I hate you!”
 “You don’t love me!”
“I’ll run away from home!”
“Then I won’t eat anything!”
“You don’t understand me!”
 “Nobody likes me.”
“You’re ruining my life!”
“I’m never coming out of my room again!”

As parents of kids with autism, we really monitor our kids’ lives.  If they have a bad day at school, we want to know why.  If someone says something mean, we want to know if there’s full scale bullying go on.  If their grades dip, we’re ready to call an IEP meeting.  Because of the level of severity of our kids’ challenges, we have to be hyper-aware and very proactive.  Our kids need us to.  But sometimes this extra-vigilant attitude can get us into trouble, too.

We’re always looking for reasons for our kids’ behavior, and sometimes we don’t look to our kid first.  We want to know who or what triggered that behavior in our child.  So when our kid says the same rotten, hurtful things that all kids his/her age do – a lot of times we blame ourselves.  “If he says he hates me, I must be doing something wrong.  I’m not showing my love in a way that my autistic child can see it.”  “If she says she won’t eat unless I turn the TV on, I’d better turn the TV on because she’s really obsessing about this.”  We assign their behavior to their autism and therefore feel like terrible parents if we’re not giving our children enough support that they don’t flip out and say hurtful things.  Or worse, we change what we expect from them.  We stop asking them to do whatever it was that triggered the outburst, even if what we were doing was good for them.

That’s when we have to take a step back and ask ourselves the age old question – “Autism or brat?”  Is our child’s behavior due to his autism or is it the same brat behavior that all kids go through once in a while?  Is what our child saying a red flag or is it something we just need to live through?  How seriously do we take it?

My point isn’t that our kids are saying hurtful things in order to manipulate us.  Sure, they might be – they’re not dumb; they can learn to manipulate their parents like any other kid.  But more than likely, they really do believe what they’re saying at the time they’re saying it.  They feel like no one likes them, or that you don’t love them, or they may really hate you right then.  I’m not discounting their feelings.  I’m just saying that what they’re going through is often the same thing that all kids their age go through.   

So, when your kid whips out one of these zingers, don’t freak out.  Don’t ignore it – we really do need to keep an eye out for depression, misunderstandings and obsessive ideas.  But don’t immediately assume that your child’s attitude is a huge danger sign either.  Sometimes our children are just living through the emotional rollercoaster that we all had to endure while growing up.  Remember, they may have autism, but they’re still kids, too.

A final note: if you’re having a hard time figuring out whether your child’s attitude is normal or if you need to intervene, talk to a therapist who knows about autism and knows your child – even if you have to go find one.  Figuring out why our kids do what they do isn’t easy.  Sometimes we need all the help we can get.

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