Dear Church

Dear Church, and I mean Church with a capital ‘C’, meaning the world wide community of believers, not an individual building or single congregation.  Dear Church, we are failing a large number of families.  We cling to an incorrect philosophy, and by doing so, make many families feel unwelcome in our services.  I, too, have been guilty of this, and am hoping to help make a positive change.  The incorrect philosophy is this – ‘Good parenting equals good behavior’.  The assumption that goes hand in hand with this is – ‘Bad behavior is the result of bad parenting’.  I fervently believed this.  I am guilty of judging other parents who had consistently poorly behaved children, thinking that they were not given proper discipline by their parents.  I am ashamed of myself, and humbled.

What I didn’t know is that there are many developmental disorders that are invisible.  And the kids who are high-functioning blend in so well that when a problem arises, we automatically assume that it’s misbehavior instead of an issue relating to their disorder.  And then we judge the parents.  Not overtly – that would be un-Christian – but with a smile and condescending attitude we make ‘helpful’ suggestions on how they can avoid this kind of misbehavior in the future.

And it’s hurtful.

And devastating.

And avoidable.

Marvin has Asperger’s Syndrome which is on the Autism Spectrum.  He’s ‘high-functioning’ which for our family meant that he wasn’t diagnosed with it until he was 7.  Which means we had 7 years of others implying that our ‘bad parenting’ was causing his behavior, causing me to doubt my own parenting.  (He was diagnosed with ADHD when he was 5, but many people, including Christians, believe that ADHD is not a real disorder.)

Parents of children with invisible special needs are judged wherever they go.  I have a friend from my support group who tried to get her son a haircut, and was asked not to return to the hair salon.  There are grocery stores that I will not return to.  Playgrounds that I avoid.  Special ‘fun events’ at the library that we tried, and aren’t going to try again.  He’s been kicked out of a YMCA camp – even though I talked with the staff at length about his needs before sending him.  I have cried during his dental appointments because all I could do was help hold him down while he screamed and fought the dentist who was trying to extract a tooth.  It took 7 adults to get that tooth out.  And yes, we did remember to give him the sedatives his doctor had prescribed before the appointment.  One time, at a department store, my husband and I were very pleased with Marvin’s behavior.  He would run ahead of us and behind us, but always within eyesight (a HUGE accomplishment), and even ask before touching things (sometimes).  And then we heard it.  Another customer, commenting to his friend as he walked by us so we would be sure to hear, “I really wish parents would control their kids.”

This is what it’s like for us, out there in the world.  Believe me, it’s easier to just stay home.  But we know we can’t do that, either.  Because our kids have to learn how to interact with the world.  And so we take a deep breath, and brace ourselves, and head out into a world where we are going to be stared at, and have others frown at us and shake their heads, and on a bad day, hear hurtful comments or be asked to leave.

I love Jesus.  I really do.  Going to church is a big part of our family’s life.  I even direct music at my church!  When we’re visiting friends and family, we like to go to church with them.  But when Marvin was a toddler and preschooler, going to a different church was one of the most stressful things in the world.  He was too old to be allowed in the nursery; he needed to go to children’s church.  But kids couldn’t go to children’s church until after the music.  And he was supposed to follow the herd of kids and go with adults he didn’t know.  Not to mention that the music was loud and unfamiliar, and he wouldn’t sit still and would try climbing over or under the seats…..  And then, if we successfully got through all of that, and we were sitting in the service and he was at children’s church with the other kids, there was fear.  The sense of dread.  Just waiting for someone to come and get us because our kid was out of control.  Or worse, hearing the meltdown and knowing everyone else could hear it, too.  I confess, sometimes we didn’t go.  Or one of us would stay home with Marvin and the other would go to church.  Other times we would try to keep Marvin with us throughout the service.  We’d have books, crayons, and quiet toys to keep him occupied.  And that would work for about 10 minutes.  Then he’d get overstimulated and agitated, and a well-intentioned usher would approach us and ask us if we would like him to show us where children’s church was.  The message received was – ‘Your child is disrupting the service and needs to leave.’

So there you have it.  The story of my family afraid to visit an unfamiliar church.  If Christian families feel this way, how do you think other families feel?

Church is supposed to be a sanctuary.  A place where people are made to feel loved and welcome.  It’s ‘good news’ after all.  We’re called to be like Jesus.  Jesus said, ‘let the children come to me’ (Matt 19:14) not ‘let the well-behaved children come to me’. Jesus also said, ‘Come to me, all you who are weary and burdened, and I will give you rest.’ (Matt 11:28)  I think parents of special needs kids are the epitome of weary and burdened.  And yet church is a stressful place for us.

I hope you’re still with me.  I’m not trying to say ‘poor me, poor me’ or ‘everyone’s a big meanie’, I’m trying to show just how pervasive this issue is.  And I want to help change it.  The first step, I believe, is to become aware of the problem.  Congratulations!  By reading this far you’ve completed step 1!  Step 2 is education.  We get sermons preached on the poor and the homeless, on reaching out to our neighbors, on stepping out of our comfort zones, on having faith and trusting God – why can’t we also have sermons about supporting the ‘invisible’ special needs?  About learning what real help looks like?  About the danger of falling into snap judgments about other parents?  The kind usher who wanted to show me where children’s church was could be taught instead to ask, ‘is there anything you need or anything I can do to help you?’  That would be so much more helpful!  I can imagine myself saying ‘could we have a couple more bulletins for him to draw on?’ or ‘can we pace at the back of the sanctuary so he can have some movement to settle him?’ A simple change in phrasing makes things much more welcoming.

We, as Christians, are called to be salt and light in the world. (Matt 5:13-16)  Living a life that radiates Jesus’ love for others.  Making them curious, and wanting to come and know more.  The CDC statistics currently report that 1 out of 68 children have an autism spectrum disorder.  Children!  Let’s say that every family has an average of 3 kids. That means that roughly 1 in 23 families are affected by autism.  And that’s just autism!  There are other ‘invisible’ disorders that cause behavior problems – ADHD, Fetal Alcohol Syndrome, Pervasive Developmental Disorder, Sensory Processing Disorder, etc.

I don’t know about you, but the thought that the Church is a frightening and stressful place for at least 1 in 23 families makes me sad.  And angry.  This is NOT how it should be.

We need to educate our congregations, and figure out ways to make our facilities more welcoming.  Perhaps a quiet room for a parent to take an overstimulated child or an alternative to children’s church where a child can look at books, or do a puzzle, or build with blocks instead of having to participate in the standard children’s church format, which for kids with autism, can be loud and disorienting and scary.  These are only suggestions to get us thinking and I’m sure there are many other things that can be done, and with very little effort.  There is a need, a huge need, that the Church needs to open its eyes to and strive to fulfill.

There’s also another side to this.  School.  When Marvin was about to start 8th grade, we moved him from public school to a private Christian school which he is now attending for his 9th grade year.  We moved him because even though he had made tons of progress with his social skills, the other students could only see him as he was in elementary school.  And the teachers had too many students to be able to help him navigate some of the larger social issues.  So we moved to private school, and my husband and I found ourselves needing to educate the teachers and staff about autism.  They had no special education services, and didn’t know much at all about autism.  Working together, we’ve been able to make school successful for Marvin, but it is far from effortless.

At my support group, a new mom came who had just gotten an autism diagnosis for her son.  She asked us about where to send him to school.  As happy as our family has been at private school, I encouraged her to send her boy to public school.  Why?  Because this family needs much more support right now than a small private school can provide.  This boy needs therapies that the public school can provide.  There are counselors and special education teachers that can help her and her husband learn about autism and how to help their boy at home.  At the public school, there are people trained to give an autistic child what he needs while the child’s parents try to adjust and learn about their child in a new way.  Private schools don’t have that (at least ours doesn’t).

Public school also exposes the average student to children with special needs, whether they realize it or not.  While this can sometimes lead to confrontations and bullying (sometimes by the special needs kid), it also challenges them to learn how to get along and work with these kids.  And more than once a counselor offered to go into Marvin’s classroom and help explain autism to the class.

Are private Christian schools educating their students in any way about autism or other ‘invisible’ disorders?

Marvin came home last week and told me about a conversation he had with other students that hurt his feelings and he didn’t know what to do about it.  These students were talking about organizing a prom, and as this was the first time Marvin had heard anything about it, he asked them why they don’t let him know about this kind of thing.  Their response?  “Because you always make it awkward.”  These are nice kids, but they have no idea how to communicate with my son in a kind manner.  Their response makes me think that perhaps they think this is something that Marvin can control, and that he makes things awkward on purpose.  I don’t really know.  What I do know is that Marvin is the first kid to attend this high school with an autism diagnosis.  And nobody at this school seems to understand what this means.  This is a school, why aren’t they educating their students about this?  Especially since it’s a disorder that affects 1 in 68 children.  And these children will become their college roommates and later their co-workers.  Can we help them learn, before these situations arise, some basic facts about autism and other ‘invisible’ disorders so they can be understanding and appropriate?  So they can be loving, accepting, and welcoming servants of Christ?

Please, please Church, open your eyes to this.  Please love these families in ways that meet their needs.  Please learn how be welcoming to these families.  Please lead the way.

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Beautiful Cupcakes

My son, Marvin, who is in high school now, is very proud of his autism.  So proud that he gets very angry, very quickly if anyone suggests looking for a cure or calls it a disability.  He insists that it’s a gift, and as for those who have more severe autism, others need to make more of an effort to see the gift.

I guess I feel like I’ve done too good a job helping him embrace his autism.  A friend from my support group asked how I managed to do this, since her child is struggling with self-doubt.  Thinking about it, I started intentionally trying to instill a positive self-image when he was four years old.  Age four was when my husband and I realized there were other issues going on with Marvin and sought help.  He was in pre-school and was desperate to play with the other kids, but his attempts to join them – which usually involved ruining the game – caused them to ostracize him.  At home he was exhibiting some compulsive behaviors, and would have explosive meltdowns for no apparent reason.  So we found a child therapist and started trying to sort everything out.

Marvin was old enough to realize that the other kids didn’t like him very much.  He also felt very badly when he made mistakes or bad choices.  Sometimes, when he’d done something wrong, he would cry and cry and cry.  I really felt that my main job at that time was to reassure him.  I would tell him that he was a good boy,  had made a mistake, and was sorry.  That I forgave him and God forgave him.  He was a good boy because God made him a good boy.  Now I know that some of you reading this are going to point out original sin or fallen nature and that we are all sinners.  But step back for a moment.  Who are we?  Really?  Genesis 1:27 says we are created in the image of God.  How can that be anything other than good?  And in the book of Mark, Jesus says to let the children come to Him, and that the kingdom of heaven belongs to them. (Mark 10:13-16)  I had a little boy who felt badly about himself, and I reminded him of his Creator who loves him.  Isn’t that the essence of the gospel?

As Marvin grew up, and continued therapy, and got diagnosed, and was put on medication, and had trouble at school, and had therapy at school – we needed to give him some sort of explanation of himself.  He knew he was different and was asking questions.  We told him the truth.  We told him that he had ADHD which meant that he had trouble controlling himself, that when a thought entered his head he tended to act without thinking, but that it also meant he had tons of energy and a generous spirit.  And we told him that he had Asperger’s Syndrome (on the Autism Spectrum), which meant that his brain was created differently.  That there were some things that were going to be challenging for him that were easy for other kids, but there would also be things that he was really good at that other kids would struggle with.  And that the things that were hard for him, he still needed to do, but we would always give him extra help.  We told both our kids that God made them the way they are on purpose.  They are good, wonderful, talented boys.  “For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made.” Psalm 139:13&14

The good news is that Marvin has fully embraced this. (I may have also told him he has superpowers….)  The bad news is that I can’t seem to open his mind up to the idea that autism isn’t wonderful for everybody all the time.  This whole thing reminds me of when I was a teenager and our youth group would have discussions about whether or not God made mistakes.  Or whether or not it was ok to change things about ourselves – was wearing glasses doubting God’s power to heal?  Or was dying my hair telling God that the hair He gave me wasn’t good enough?

And then I started thinking about cupcakes.

What if each one of us is a beautifully frosted and decorated cupcake?  I imagine God giving all His attention and focus on the one cupcake in front of Him, sculpting and crafting a stunning, unique, and beautiful cupcake.  And then He sends this cupcake into the world.  I picture it going in one of those plastic cupcake containers like at the grocery store.  God puts it in the minivan and sends it into a fallen world, where bad stuff can happen.  Maybe the minivan hit a pothole, or got rear-ended on the way, but during transit some of the frosting got a little smooshed.  Or some of the sprinkles fell off.  It’s no longer exactly the way God intended it to be.  It’s still beautiful.  It’s still unique.  It’s still been made on purpose.  But it’s also appropriate for someone qualified (doctors, therapists, parents, the Holy Spirit, pastry chefs) to touch up the frosting or to put the sprinkles back on.  Someone who can clearly see that the frosting flower belongs at the top of the cupcake instead of on the side, or that the three or four green sprinkles are not an accident, but just need to have the other green ones that fell off put back on.

What I’m trying to say is that I can believe that Marvin’s autism has given him some wonderful God-given gifts, and at the same time pray that significant help or even a cure can be discovered because there are also some awful things about autism.  My son is able to talk, and can even be quite articulate, but I know there are many, many families who have autistic children who can’t speak.  I know I get frustrated trying to communicate with my son who pays no attention to body language, facial expressions, or tones of voice unless I draw attention to it (‘what is my face telling you right now?’ comes out of my mouth a lot!).  I can’t imagine the level of frustration and feelings of helplessness that parents of nonspeaking autistic children have.  Maybe that frosting got a bit more smooshed.  Is it wrong to hope and pray that someone figures out how to re-fluff that frosting?  I am all for celebrating the unique gifts and talents that each of us have.  And I also believe that every hardship is an opportunity to know God more.  And I also believe that searching for ways to understand autism and to cure autism does not mean that I think my child is less.  Marvin and Wesley are the most beautiful cupcakes I’ve ever seen!

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I’m Tired

I haven’t posted for a long time. Not because I haven’t been thinking about it, or don’t have any ideas or stories to tell. But because I’ve been feeling really overwhelmed and burdened down. Even though this school year is going better than any other since 1st grade, it’s still a lot of work, a lot of meetings, a lot of strategies to come up with, a lot of discussions and behavior analyzing. Not to mention the daylight savings change in March, followed by spring break, followed by the arrival of spring and allergens and cabin fever and concerts and field trips. I’m tired of having the same battles every single day – getting up in the morning, getting kids to school on time, homework, chores, etc. It seems like every year at this time, I’m more worn out and exhausted than I was the year before. And I find myself longing for the end of the school year, and at the same time completely dreading it.

I’m tired of feeling guilty. I feel guilty that so much time, money, and energy is spent on Marvin, and I worry that I’m neglecting Wesley. Or worse, that Wesley has noticed the imbalance. Then I make an effort to spend more one-on-one time with Wesley, and I feel guilty because I enjoy the time I spend him much more than time I spend with Marvin. It’s so much less work – I can focus on enjoying Wesley, and don’t have to be constantly teaching social skills or worrying over interactions with others or run-ins with less than gracious classmates. It is so much fun, so much easier to be with my neurotypical child. And that sentence makes me feel like the worst mother in the world.

I’m tired of being tired. My brain never shuts off. I’m always thinking about how to explain something or how to motivate Marvin into caring about schoolwork or how to explain our family’s needs to friends coming to visit. I can’t stop. On the plus side, I’ve had some really good ideas while in the shower. And at 2am. And at a stoplight. And when I’m out trying to have some ‘me’ time. It’s hard to fall asleep at night. It’s hard to get up in the morning. I am always tired.

I’m tired of inspirational platitudes and unsolicited advice. I’m tired of having books, movies, diets, and therapies recommended to me by people who don’t have an inkling of what I deal with daily. And if I hear the phrase ‘this, too, shall pass’ one more time I just might punch somebody. Not really. I’ve learned to keep my body to myself. I understand the kind intention of these words and advice, but really wish there were a polite way to say “Shut up! You don’t have the education or experience that qualifies you to give me advice!”

Here’s the spot in the blog post where I tell a funny story or give some deep insight. I don’t have any this time. I’m tired.

What I can do is tell you how I cope. I love going to my support group. I really love it. It’s really, really nice to sit and visit with other parents who are also tired. It’s really nice to know I’m not alone.

The other thing that I do to cope is acknowledge that I’m feeling this way. Then I take a deep breath, shove all these feelings aside, and trudge forward. Because I have to. Planet Earth depends on me.

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Our Parenting To-Do List

A couple of days ago I was visiting with a friend. She has a little boy, not quite 4, who has special needs. She was telling me that she wanted to make sure he had some sort of hobby or interest like music or sports so he could make friends easier in high school. I told her not to worry about high school now, it would drive her crazy. But it got me thinking.

If we think too far into the future, we will only put more pressure on ourselves and our kids. But at the same time we cannot forget that the future is coming. There needs to be some sort of balance between the two, and I think the way to find it is to give a lot of thought to our priorities.

Having my oldest with autism and my youngest as neuro-typical has given me some insight about parenting to-do lists. We all have them – whether you think you do or not. There are things that you plan to teach your kids. How to read, how to pick-up after themselves, how to cook, how to drive, how to be polite, the list goes on. What I’ve noticed with my kids, is that there are things on Marvin’s to-do list that are not on Wesley’s. I remember when Marvin was about 7, and his grandmother would call to talk to him. We’d tell him who was on the phone, and he would eagerly take the phone and say something like, “Hi Grandma! I got a new Transformer yesterday. His name is Bumblebee and he’s yellow and it’s really hard to transform him. I love you! Goodbye!” And then he would hang up. Grandma usually didn’t ever get a chance to speak, and would need to call back. So we came up with a rule. ‘You cannot hang up the phone until the other person says goodbye.’ We had to explain to him that the other person on the phone might have things to say, too. It took about 2 months for him to get the hang of this. And we had to do a lot of reminding, and poor grandma had to call back several times, but he did eventually get the hang of it. We never once had to explain this to Wesley. He just seemed to understand how a phone conversation worked without us having to tell him.

My point is that the parenting to-do list for a special needs kid has so much more stuff on it than the parenting to-do list for a neuro-typical kid. There are many things that Wesley just seems to know that Marvin is completely clueless about. We have to actively teach those things to Marvin, and it takes a while for him to learn.

So we have to let some things go.

And that is really hard to do.

It comes down to priorities. Which things are safety concerns and which things are simply harmless quirks? Marvin bites his nails. I mean, really bites his nails. I haven’t had to cut his fingernails since he was 3. That is a quirk that I need to let slide, because there are other more important things to worry about. Like looking both ways before crossing the street which is a safety concern. Which things are important for learning academics and social skills and which things are simply on the school’s checklist of things every student has to do? What behaviors are social taboos and what behaviors are simply my own personal pet peeves?

I remember when I finally came to the conclusion that recess was not a life skill my kid needed. As soon as elementary school is done, there is no more recess. So why was I spending so much time trying to make recess successful when he was happy staying inside reading a book? Why was I so insistent on making him have fun the same way other kids do – outside in a loud, wild, unstructured, barely supervised way? I needed to focus my energy – and have him focus his energy – on helping him with his peer relationships inside the classroom. Because that IS a life skill he needs. That is a skill he will need throughout high school, college, and in the work place.

So, my advice is this: Think about your child as an adult, and figure out the basic skills he/she will need. For example – being kind, respecting personal space, being responsible for him/herself, following directions and rules. Then focus on what your child is able to do now. Think about his/her age and abilities and work on one or two things at a time, like saying please and thank you, or not hitting his/her classmates.

This is hard stuff. And you’ll question yourself many times. And other parents will question you. And the school will question you. But if you are intentional about what you are teaching your child, if you’ve thought about what your parenting priorities are, you are doing a GREAT job!

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My Stubborn Child

Marvin is very stubborn. I don’t mean he’s ‘strong-willed’, or that he’s got an ‘assertive personality’. I mean knockdown, drag out, no holds barred, in your face, like a mule on a bad day, STUBBORN! And has been since the day he was born. He knows what he wants and he makes sure you know about it!

As a baby, he would want something he shouldn’t have and cry for it like all babies do. But Marvin would keep crying and screaming about it. He was our first baby, so everyone felt the need to ‘help’ us with their parenting suggestions. It was always the same advice: Distract him with a favorite toy or something else. It was terrible advice! All that did was make him mad. He’d swat it away (like King Kong and the airplanes), or take it and throw it across the room! We thought our ‘helpful’ friends were crazy – or that they hated us – because their advice was so far off the mark. Our solution was to hide or cover up everything that he wasn’t allowed to touch. My knick-knacks have been tucked away in a box for so long, I’m not sure where they are anymore, or even what they are…. When we had Wesley, and he could be easily distracted by a toy, we finally understood our friends’ advice.

Marvin also hated naps when he was a baby. He would be exhausted, face flushed and eyes droopy, but did not want to take a nap. I would hold him, rock him, sit with him in a quiet place, I tried everything. But he would have none of it. As soon as I tried tilting him to a reclined position, he’d start screaming. He would scream for an hour, and then nap for 20 minutes. It just wasn’t fair!

Marvin started the “terrible twos” at age 13 months. I remember I was mopping the kitchen floor, and Marvin was in the adjacent living room on the carpet. He crawled over to me, and I told him ‘no’ and put him back on the carpet. Then he crawled back towards me, stopping at the edge of the carpet. Then he looked at me, to make sure I was watching, and deliberately put his hand into the kitchen. And he had that look in his eye. You know the one, the look that says, ‘oh yeah, what are you going to do about it?’ I couldn’t believe it. My baby was trying to out-stubborn me at just over a year old!

When he started talking, he quickly learned to argue. And he found every opportunity that he could to correct me. We eventually had to make a rule about something as innocuous as telling time. He’d ask me what time it was, and I’d say 1:42. Then he’d say, “actually it’s 1:44.” This was very aggravating, largely because I’ve never been able to figure out how set every clock in the house to the exact same time! We told him that he was not allowed to correct anyone on the time unless it was more than a 5-minute difference.

When he got to be about 4 or 5 years old, I had a talk with Marvin about being stubborn. First I told him that he was stubborn just like me, and that it was good to be stubborn. It was a good quality that would help him in his life. I told him that it was a lot like knowing how to throw a ball. It’s a good thing to know how to throw a ball, but it’s not ok to throw a ball in the living room. It’s the same with being stubborn. It’s not okay to be stubborn by not eating your dinner, but it is good to use your stubbornness to finish a 100-piece puzzle, or to learn how to read! It’s how he chooses to use his stubbornness that’s good or bad.

Even with my insights to help him, he would still choose to use his stubbornness against me, and, ultimately, himself. He would fight with me over everything, even what to wear. Normally, what he was wearing would not be a battle I would choose to fight, but on this particular day, he was wearing his favorite sweater and corduroy pants when the weather forecast was predicting 75 degrees and 80% humidity. The kid was going to give himself heat stroke! I had to wrestle him out of his clothes, and he was fighting me with all he had. That afternoon, I boxed up all of his winter clothing so we wouldn’t have to have a rematch.

When he was in elementary school, so about age 9 or 10, I had another talk with him about being stubborn. The first thing I told him was that he got his stubbornness from me, so I was just as stubborn as he was, but with 25 years more experience. He wasn’t going to be able to out-stubborn me! Then I told him that his stubbornness could either help him or hurt him. I told him that where he chose to put his focus would determine whether his stubbornness would help him or not. I gave him an example – Let’s pretend that I told you that you can’t play video games until your room is clean. If you focus on ‘I don’t want to clean my room,’ your stubbornness will keep you from getting to play video games. If you focus on ‘I want to play video games,’ then your stubbornness will help you overcome the obstacle of cleaning your room so you can play video games.

He also started to refine his arguing skills. It was similar to the constant ‘why’ that 3-year-olds do, just a bit more sophisticated.

Marvin – Can I watch TV?
Me – Not now.
Marvin – Why not?
Me – Because we’re going grocery shopping in 10 minutes.
Marvin – Can I watch TV for 10 minutes?
Me – No, because we’re getting ready to go.
Marvin – But I am ready to go. Can I watch TV?
Me – You don’t have your shoes on yet.
Marvin – But it doesn’t take 10 minutes to put my shoes on. It only takes 1 minute. So can I watch TV for 9 minutes?

And on and on and on. He had an answer for everything, and it always ended the same way. I’d end up yelling at him. I would even use the phrase every mother has vowed to never use, “Because I said so!” And neither one of us were happy with this outcome. Eventually, I figured out how to not get drawn in to this kind of verbal argument. I’d give him an answer, and would let him ask why once. After that, I would say, “I’ve given you an answer and a reason. It’s time for you to obey.” And if he continued to push me after that, I would discipline him, usually by taking away a privilege, or sending him to his room for a time-out. This method is far less exhausting!!!

When he’s in the mood to argue, Greg and I try to stop him from digging himself into a deeper and deeper hole, but he doesn’t let us. We are constantly telling him, “Stop talking now. You’re making it worse, stop talking now!” And he doesn’t. Like a verbal battle to the death, he keeps going and going, insulting us, making threats, calling us names, because he has to have the last word.

When he got to middle school, helped me explain this concept in a new and funny way with this now retired de-motivator:

Sometimes the only difference between a budding genius and a blooming idiot is where they choose to take a stand.
It says – ‘Wisdom – Sometimes the only difference between a budding genius and a blooming idiot is where they choose to take a stand.’ I’ve got it hanging on the wall in my living room! I told Marvin that this needs to be his life motto! And just last week I asked him if, during his tantrum the previous evening, he was behaving like a budding genius or a blooming idiot. So it’s still something we’re working on. And it will be something he works on for his whole life, like I do. Sometimes he’ll mess up (just like I do), but hopefully I’ve given him enough insight that he’ll learn from his mess-ups. Hopefully, he’ll learn to use his stubborn streak to make a positive impact on the world. He’s certainly capable.

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The Wedding!

Greg’s brother, who wishes to be called Jack, got married to a wonderful girl who wishes to be called Amelia on Dec 28th, so this year’s Christmastime for our family was going to be very, very different than usual. Marvin doesn’t do well when things are different, so Greg and I spent about 2 months strategizing how to make things go more smoothly. Our extended family helped us out quite a bit, especially with their Christmas gifts, which were purchased with this trip in mind.

There were many, many things to consider and prepare for. First, we would be driving to the wedding, which would be about a nine hour drive if road conditions were good. So we planned for the trip to take 2 days, which meant leaving on Christmas Day. That meant celebrating Christmas on Christmas Eve, which was also a work day for Greg. Since we would be gone for about a week, I felt it would be a fire hazard to have a live Christmas tree this year, so we borrowed a pre-lit, artificial tree. So some of our normal Christmas traditions were going to be very different. We were not going to go out in the woods and chop down our own tree this year; instead we would have an artificial tree. Instead of putting colored lights all over the tree, it came with white lights. Instead of going to church in the late afternoon on Christmas Eve, we would be opening our gifts and packing, and on Christmas morning, instead of opening our gifts, we would get in the car and drive for hours.

That’s a lot of things that would be different. But Marvin is 13 now, and can understand the “why” a lot better than he used to. So we spent a lot of time talking about why and how Christmas this year would be different. He did complain about the artificial tree, but not too much, and he understood the safety reasons, and agreed that it was better than no tree at all. And we were opening presents a day early, which he didn’t mind at all!

The drive was going to take 2 days to get there, and 2 days to get back. That’s a long time in the car. So I stocked up on snacks, and included some things that the boys don’t normally have, like cookies. We have a portable DVD player that works in our van, and the boys wanted to get each other movies as Christmas gifts. So they had 2 brand new movies to watch on the drive. My mother sent cash this year and let me do her shopping. I found a Transformers paper craft kit that contained 10 robots, 2 wind up motors, and a battle arena. My boys LOVE Transformers. And they LOVE to build things. (They frequently raid our recycle bin and build robots out of cardboard boxes and water bottles.) They also love origami. So this looked perfect! I got one for each of them, and also got for each of them a plastic tub with scissors, tape, and small brads. I wrapped them up and told them they could open those gifts in the car on Christmas morning. I grabbed 2 cookie sheets (the jelly-roll ones that have a small vertical edge) for them to use as lap tables in the car. They were so happy! I also saved some of the cash from my mother, and gave it to the boys the day we started back home. There is no Toys R Us where we live, but there were several where the wedding was. So they each bought themselves a new toy from Toys R Us to play with on the long drive home. Greg’s sister, who wishes to be called Samantha, got each boy an iPod shuffle in his favorite color, and I got them headphones to match because I was unsure whether Marvin would like having the earbuds in his ears. So for the long car ride they had – new movies, music on their iPods, Transformers crafts, snacks, and new toys. They did great! And the headphones I got them worked with the DVD player so Greg and I didn’t have to listen to their movies over and over again! We also made sure to stay at hotels where the boys could swim (Marvin loves to swim).

So that takes care of our very different Christmas, and the long drive. We also needed to get through the actual wedding. And since it was a close family member getting married, this meant helping to set up, going to the rehearsal and rehearsal dinner, the ceremony and reception, pictures, and helping to clean up. And, seeing family members that we haven’t seen in years, and meeting Amelia’s family for the first time. And mealtimes. And not having dad sit with us during the ceremony because he’s the best man. And the dancing and very loud music. And all the people. It makes that other stuff look like a cakewalk. I admit I was very nervous and anxious. Greg said that it felt like we were bringing a brick of nitroglycerin to a crowded event. YES!!! That’s exactly how it feels! Because if you handle everything just right, everything might be ok. Or there could be a giant explosion. And we didn’t want to ruin Jack and Amelia’s wedding. And we really needed and wanted to be there.

The first piece I tackled was mealtimes. I decided that this was not the time to fight over food — the focus needed to be on building family relationships and social interactions, and those things were challenging enough on their own. I told both boys that for the entire trip they didn’t have to eat anything they didn’t want to. I had tons of snacks and protein bars, and even stuff for peanut butter and jelly sandwiches that they could eat instead. I told them that they couldn’t say anything negative about any of the food, and if they were asked directly if they liked something that they didn’t care for, they had to say, “It’s not my favorite,” and say nothing else. That was a very good decision. At the hotels, Greg made breakfasts successful for us. Instead of waking the boys in the morning and trying to rush them to get to the lobby for breakfast before it was over, Greg let the boys and I sleep in and brought breakfast to us so we could eat when we got up.

The next thing we worked on was making sure that Amelia’s family was aware of Marvin’s Asperger’s, so that the inevitable awkward social interactions would be a bit less awkward. That meant checking and double checking with Jack that he and Amelia had told them. And then we checked again. And again. (I fear that we may have overdid that one a bit!) We also made sure we got a schedule for the weekend so Marvin could see when we would be at the hotel, when we’d need to help set up, when the ceremony was, and when pictures were….. We also asked Jack to scout the location of the reception for a quiet spot that Marvin could go to if/when things got to be too much for him. Then we told Marvin that there would be a spot for him to go be alone, which made him feel less anxious. So the minute we arrived to help set up, Marvin went straight to Jack and asked where his quiet spot was. And awesome uncle that Jack is, he was more than happy to show him right away. Marvin’s Aunt Samantha went above and beyond, too. She’s in the Air Force, and bought Marvin a pair of blue (his favorite color) noise reduction headphones – the same kind they use on the flight line and on the shooting range. We told him he couldn’t wear them during the actual ceremony, but other than that, he could wear them whenever he needed, and he wore them a lot! Later that evening we had to tell him that he shouldn’t sleep in them….

The whole thing went really, really well. I’m so very proud of both of my boys for their fantastic behavior. Wesley chatted with and charmed everyone, and really enjoyed the dancing during the reception. The boy’s got moves!!! 🙂 Marvin really impressed us with his maturity and self-advocacy. When we got to the house where the rehearsal dinner was going to be, he went on his own to find the hostess/homeowner and explained to her that he may feel overwhelmed and need a quiet spot to calm down. Then he stayed in that quiet spot for roughly 45 minutes. When he came back to the party he was smiling and happy and interacted very well with the small children that were there. He looked so calm and relaxed and, of course, wore the noise reduction headphones the entire evening.

Amelia’s mother noticed that the boys were reading a Lego Play Book (full of ideas for things to make with Legos they already have) that they had received for Christmas from Greg’s mom. She said that she had a big tub of Legos that she could bring to the wedding so the boys could build stuff before and after the wedding. That was a big hit with the boys, and so very thoughtful of her, especially considering her daughter was getting married the next day! Everyone was so very gracious, and so very helpful. And the wedding was beautiful. And my boys ate peanut butter crackers and trail mix instead of the soup and salad at the reception, and nobody cared. And Marvin wore his headphones for the entire reception, and then made a mad dash for his quiet spot as soon as the music started for dancing. The whole thing went better than I had ever hoped possible.

So how did we pull this off? Many reasons and people –

Marvin’s age and maturity level have gotten to a point where he can help us know what he needs.
We decided to not fight about food.
Family members pitched in with awesome, helpful Christmas gifts.
Family members did prep work to make sure the things Marvin needed were available.
Everyone was kind.

It was such a blessing to have such a successful trip. Greg and I have been working at this parenting-a-special-needs-kid thing for so long that sometimes it feels like all we’re managing to do is tread water and we don’t actually make any progress. God used this trip to show us that much progress has been made. It’s working. And it’s worth it!

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Wesley’s Broken Arm

I thought I would share with you my favorite story about Wesley, which is also the reason that I’m calling him Wesley in this blog. When he was 7, and Marvin was 10, they were playing together in the basement. They had this really big box that they liked to play pretend with. Wesley was inside of it, with his arms sticking out, and Marvin – who really struggles with impulse control – thought it would be funny to tip the box over. Wesley landed, arm first, on our metal laundry rack. His left arm looked like it had 2 elbows. Needless to say, we went to the ER. They set his arm and put it in a sling while they waited for the swelling to come and go before putting a cast on it.

The next day, we kept Wesley home from school and Greg thought it would be fun to watch ‘The Princess Bride’ with him. He loved it!!! The day after that, Wesley came home from school with little cuts all over his right hand. We asked him what happened, and he told us that he and his buddy had been sword fighting with scissors. We’ve had a lot of fun with ‘he’s not left-handed’ jokes.

We didn’t punish Marvin, but we talked with him quite a bit about what happened. And we explained that he was responsible, and because of that, he had to help Wesley. We pointed out that Wesley was going to be unable to do some of his chores so Marvin would have to do them for him, and Wesley was going to need help tying his shoes or getting his backpack to school, so Marvin was going to need to help.

Marvin truly loves his brother, and being responsible for breaking his arm left him with a lot of really big emotions that he had a lot of trouble processing. For several weeks, he kept ping-ponging between guilt, jealousy, and anger. He spent all of his allowance money on an ‘I’m sorry’ toy to give to Wesley, and the same day he threw Wesley’s shoes towards him and said, ‘Good luck tying your shoes!’ It was a long several weeks.

Marvin felt really guilty. Which he should have, because he did do something wrong. And Greg and I were trying to use that to teach him. But his guilt would sometimes overwhelm him and he’d lay on his bed sobbing. We were also trying to teach him about God’s love and forgiveness. And to teach him that being forgiven does not erase consequences. It was challenging, but we all got through it. Good friends of the family would share their broken bone stories with Marvin and that seemed to help. One of them was even a big brother breaking little brother’s arm story and he really clung to that one. And it also helped that Wesley has always been very good natured, and loves his brother deeply, so forgave him readily. We eventually got through it, and now we look back and laugh at Wesley sword-fighting with scissors right after breaking his arm.


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