Do I have courage?

This is what Monster asked me today.

It went like this.

"Mommy, what is courage?"

"It's being brave and strong."

"Do I have courage?"

"You sure as heck do!"

"Tell me why I am strong and brave. Tell me brave first."

"You're brave because you walk into dark rooms. You sleep in your own bed. You stand up to your friends when they try to get you to do bad things. You get onto the schoolbus by yourself every day and go to school. You try new things. "

"And how am I strong?"

"Well, when you use it this way, "strength" isn't about muscles, it's more about being strong inside."

"Like, when my friends call me a bad name and I don't let it hurt my feelings because it's their problem and not mine?"

"Exactly! And you are VERY strong-willed. That's a good thing lots of the time."

"So I have lots of courage?"

"Oh yeah!! TONS!!"

And I swear I saw his little chest puff up just a bit. I felt so good about the conversation.

I just love my little Monster so much!

Cells

"Calming rooms", they're called. And apparently my son spends at least a few minutes most every school day in one.

This bothers me.

I don't know why.

I have signed him up for half-day classes at a special school for children with behavioral difficulties (this would be for summer and in conjunction with school when it starts back up). I had to sign a release that it was okay to place my child in a locked room alone if he was out of control.

Sigh.

I sit here thinking, I shouldn't have to sign these releases. My son shouldn't need to be locked up. But he does need it. Even I would admit it. The kid is STRONG. He's 6 years old, over 4 feet tall, and is 54 pounds of solid muscle. When we wrestle on the bed he sometimes really CAN pin me - it's not always me pretending.

So of course the teachers don't want to be hurt. And they don't want the kids hurt.

I just hate that this is part of my son's life. I just don't know what the alternative is anymore.

I watch cop shows on TV and think to myself, I can do this now or he can end up in jail when he gets older.

But what if he goes through all of this and still ends up in trouble when he's older?

I hate that there are no guarantees. Just hate it.

This is my son, in an EBD class

Monster is in his third week in his new classroom. The EBD room, the one I was so afraid to put him into. Because, you know, he's six, and the other boys in the room are 8 or 9, and they have different issues than my son. Everyone was against this move besides Monster's team. Even me.

But now.

My son is learning. He is sitting still and he is reading and doing math with 1st graders, and sitting in on circle time with kindergartners, and he is actually doing schoolwork and he is LOVING it. Who would have known that, in the right environment, my son would suddenly decide that sitting still and doing schoolwork would actually be something he enjoyed?

I guess the moral of this story is, you need to go with your gut. Research as much as you can. Ask for as much advice as you can. Make the teachers and the whole school team tell you their whole plan for your child, and why they think this is the best place. Make phone calls and see if you can find a better place.

Then, take a deep breath, and follow your gut. And don't look back. Because you did your research and you made your best choice. Yes I have changed the trajectory of my son's life. I got lucky this time and made (I think) a good choice. But if this turns out to be a wrong choice, I will try to remember not to beat myself up over what I chose. We can only make the best decision with the information we have. It's a gamble. And it's your kid's life. But you have to move forward and choose paths.

I think it's important to always look forward.

Growing up normal

This six-year-old boy of mine has suddenly developed an attitude. He's a smartass. He talks back and mouths off. And I wonder, is the EBD classroom to blame? Is he picking up attitude from those boys? I'm going to ask his teacher what she thinks. I really have no idea how much exposure he's had to these boys. But they're all second graders, and my son is still in kindergarten.
But then there's part of me that thinks, this is normal 6-year-old behavior. And it is. So I wonder, is this a sign of improvement, in a way? A sign that he has taken another step into the "normal" world?
It's like the time I was arguing with his after-school-care director. She was telling me how Monster had called him aide the "f" word and a poopy head, and I had asked her, but isn't that an improvement in your eyes? Because it was in mine. At a point not too long ago in my son's life he would have simply whacked the woman. Not that what he did was right at all, but, you know, baby steps.
So. Recently I have been sending my son to his room for being a little smartass to me or his dad quite often. But even as I do it I wonder, is this progress, in some sort of odd, Asperger's world way? Because before he developed this attitude he simply threw tantrums. It's like he's found his own voice now, and he's using it, dammit.


This brings me to another, sadder sort of progress in my son. Sad for me, at least. Monster is not even my baby boy anymore. I knew it would happen eventually but when this attitude moved in his wanting to snuggle with me all of the time, play with me all of the time, want my undivided attention to the point that I sometimes thought I would suffocate, moved out. Sure last night he wanted to fall asleep in my bed. I have cut him down to once a weekend and any nights hubby isn't home. But he doesn't even seem to really mind anymore. He used to cry when we told him no. Now he just shrugs and asks when the weekend is.

I think a lot lately about that book, "Loverboy", and how terrible that mom felt when she realized her son was moving into the outside world and loving others besides just her and I see the tragedy she felt, the loss. Would I kill us both because I was losing my loverboy? Of course not. But I understand her despondence.

So. My Monster grows up and away from me. And even as I feel sad I also feel a sort of relief. As if I can breathe a bit. Today I yelled at him for wanting to come in through the front door when the back was already opened. Yes, I yelled. It was a buildup of the entire day, so it maybe wasn't as awful as it sounds alone. But for the first time ever this child held a grudge against me. Something we had planned on doing before I yelled, he suddenly changed his mind and said no, I want to help Daddy. And I realized that I knew this day would come, when I was not the beginning and end of his love and desires. When he could tell me no to something I had invited him to do. The umbilical, which maybe has been intact too long, has definitely been severed.

And I tell myself I should be sad. Maybe I should be. Maybe I will be.

Important, exciting news (to me, at least)!

Parents of disabled children who need to sometimes take a day off here or there to care for your child – go to your HR right now and tell them you want to apply for Intermittent FMLA. I just found out about this and I am super-excited! I just got my first disciplinary action for missing work because my son got kicked out of the drop-in daycare and I had to leave to get him. FMLA will protect me from that in the future. So – if you get calls from your child’s school or daycare and need to go pick them up a lot, do this!

A dog???

I’m reading this book, “Not Even Wrong” by Paul Collins. His son is autistic and he does all this historic research on autism and it is SO interesting and SO good.
I get to this part where he is visiting a prison in Wisconsin where service dogs are trained. And autistic people get mentioned. The author asks the man in charge of the operation, what would you teach a service dog to do for an autistic person? And he answers, keep them safe. Keep them from darting in front of cars, or being grabbed or scammed by people who take advantage of oblivious people. Teach them how to interact by learning love and kindness from the dog and toward the dog.
And I thought, wow, that is amazing. What an incredible idea. So I look up guide dogs for autistic people where we live and there is a local nes story about an autistic child with a service dog, that he is the first to get one and the family goes on and on about how much easier their lives are now with the service dog. And there’s a link to the website for the service dogs.I want one for Monster. I emailed them asking for an application. I think about my son who runs out in front of cars in parking lots, who will run across a street without thinking, who loves animals but isn’t quite sure how to approach them, and who wants so badly to have a close friend but doesn’t know how. And I think, a dog. Of course. But a service dog, even better. A dog who is trained to help my son. If they tell me no, your son does not qualify, the next step will be to work on hubby to buy Monster a dog. We’ve tried cats. Not only am I suddenly horribly allergic to them, but Monster develops horrible obsessive love/fear relationships with them. They wander the house. He doesn’t know where they are. They jump out at him and this leaves him always asking, “where’s the cat?” in a nervous voice. He asks us to lock the cat in a room overnight and we tell him no. He asks us to close his bedroom door at night and we do, but then bedtime becomes panic, “Close the door, quick! Quick!! THE CAT’S COMING!”
Stupidly, we tried cats twice. The first was a kitten and we decided quickly that a kitten was too vulnerable for our toddler boy – more than once I found him lifting the cat with his hands arounds its throat. We gave her away. We got an almost-adult male. But Monster started picking on him and this cat seemed like he had come from someplace abusive, and he started fighting back. He would jump out of nowhere and shred his claws down Monster’s legs. Monster would look at us aghast and scream, “He did that for NO REASON!” but of course there was a reason; the cat, like Monster, did not always exact his revenge at the moment he was injured. The two of them played this game of waiting until the other was vulnerable, not paying attention, and then one would kick, the other would claw, and both would again dash off and wait for their next chance.It was nightmarish. Kitty #2 had to go. But a dog. The RIGHT dog. A sweet, loving dog that doesn’t jump on you (Monster hates that) doesn’t lick your face off (he hates that too), isn’t too high-strung or jumpy (this would add to Monster’s already high anxiety – he needs a calming influence). A dog would be wonderful for my son. I just emailed them. I will tell hubby tonight but we won’t say a word to Monster about this type of dog or any dog. But this is actually exciting for me.

Tooth #2 is out!!!

With much less fighting, screaming, and terror than the first one.

I think it helped that the sweet 10-year-old girl down the street was visiting. Monster is in love with her and would never want her to think badly of him. So he only screamed and cried a little bit.

From now on I am inviting the girl down the street to our house every time Monser has a tooth to pull.

Thankful

I do a lot of complaining about the people I have to deal with on a daily basis when it comes to my son. I hardly even mention those who have been there for me through all of this and have given me support and good advise and kindness and reassurance.

1 - My son’s psychologist.
She specializes in ASD children. She’s about 15. Okay- she’s older, but she is way young, she loves her job and she is always willing to talk to me and reassure me when I am wondering if I am wrong like hubby or some teacher or another is telling me. She likes to tell me how “tough” I have become in this past year and just today congratulated me on keeping my sense of humor. If only she knew- I was really depressed before she called. SHE helps me keep my sense of humor. She is reassuring even if she thinks I need to change something. Her reaction at these times is, “Well, did it work? No? Maybe next time you could try this…”
Love her. Monster loves her although since she is sweet, young, and pretty she makes him shy.

2 – The school autism specialist
She came rushing in when Monster was having so much trouble and the school was trying to punish monster and reinforce how bad he was being. She straightened them out, educated them on how Monster SHOULD be disciplined, set up a chart for M to show him how he could “Hit a bump” but still go on to have a good day. She is the one and only person who took the time with Monster and helped turn his attitude about himself around from that of a bad boy who is bad every day to a boy who is good every day but hits some bumps. I love her and Monster loves her. She has changed Monster’s whole outlook on himself, which actually was quite simple since she knew what he needed and all Monster has ever wanted is to be a good boy.

3 – My support group
I put off going to these meetings for almost a year. I am not a social person and I couldn’t talk about Monster without crying anyhow. Month after month would go by and I would have a new excuse as to why I didn’t want to go.
Thank goodness I finally went. What wonderful, kind, understanding people!! What knowledge they have! They are so willing to share and help and give any info they can so that all of us are out there fighting our best fights. We even found a new playmate through the support group – a boy a year older than M who has the exact same issues at his school. The two of them get along SO well. I love that Monster has a playmate just like him, and that they really like each other.
I would not have survived without the supoprt group. They rock.

4 – My son’s pediatrician
He admits he knows very little about Asperger’s. But he signs off whatever we need him to sign off to get Monster the help he needs – prescriptions and requests for OT, PT, etc. He has always been such a concerned, kind caregiver toward my son. Aside from the fact that I had to argue with him a few times about CIO (he said do it; I said I couldn’t), he also was super supportive of my extended breast feeding and supported me when hubby and mother-in-law waged a war against my “fat” baby. “He’s a baby,” the doctor said, “babies are SUPPOSED to be chubby! If you come back and he’s two, and he still looks like this, and you tell me he’ll only eat Mc Donald’s, THEN we’ll deal with it."
By the time he was two, Monster was tall and healthfully thin and strong.

5 – My online moms to onlies board
I have given them hell sometimes because I spent a long time feeling isolated and misunderstood. But When I got over that feeling I realized that these other moms, some of whom I have known for over 4 years now – have lots of good ideas and experience, that has nothing to do with ASD and lots to do with simply being a mom. Since I don’t have a helluva lot of IRL friends these women are the ones I turn to for any sort of advice or support. Like my support group, I don’t know what I’d do without them.

6 – Angels
Okay, now don’t freak on me and think I’m getting all new-agey and weird. The truth of the matter is, there have been many more times than I can count when all seemed to be lost, and some obscure person would drop into my life, mysteriously and out of nowhere, and give me the advise, information, or support I needed. They have never stuck around long, but they seem to drop by when I need them most, deliver me some sort of hope, and then go on their ways. They can be (and have been) waitresses, coworkers I don’t know well, strangers at the park, nurses, county workers (like the one who helped me even though I wasn’t assigned to her, because I called her and begged her for help when my son was getting kicked out of one of his daycares), assorted but rare daycare workers, case workers, neighbors, etc.

7 – Other Children
Every child who plays with my son, who makes him feel that he belongs, even if only for the two hours they are together. Every parent who has picked up the phone and called to invite Monster over for a playdate, and every parent who has returned my call to get the kids together. My son hungers for friendship. Every time a child gives him just a few moments of their time, my son is able to go another day seeing himself as a good friend, a worthy playmate.

8 – Fate
Which seems to place my son and I onto roads that may look like they lead nowhere but after several stops and switchbacks it is clear to me that this path is leading us somewhere good and important. Fate may be something I am making, but it doesn’t feel like it. It’s like the angels; I don’t ask for its help, but it helps me anyhow.

I’m sure there are more. As lonely and sad as I get I know that there will still be people I can turn to, even if it’s some stranger who sits next to me at McDonald’s while my son is playing and I am ready to cry, and asks me what’s up.

I don’t even look for angels anymore. I just accept that they will show up. And they do.

Pity Party

I seem to have cornered the market on pity parties. I throw them for myself quite often. It seems to give me something to focus on when life either throws me a whopper or gets too simple and I’m looking for ways to make myself feel awful.

Did I do this before Monster was born? Of course. But I had a much larger array of subjects to choose from back then. Now my whole focus is on Monster. So, when any tiny thing goes wrong, I fall apart.

Most of the time these falling-apart sessions don’t last long. My normal MO nowadays is
1. Freak out
2. Fall apart
3. Cry a lot
4. Whine to anyone who will listen
5. Get pissed
6. Stop whining and start fighting
7. With a new surge of fury, push self out of pity mode into action mode.

I’m getting quite good at going through these steps pretty quickly.

But what about when there is nothing to get angry about? What if there is nothing to force me to stand up and fight? Up until now I have had lots of fights. Whether or not they were truly necessary is a moot point. I fought them because a part of me felt that I needed to fight, or fall into despair.

But times like this, when I am down about something I have no control over, and there is really nobody to get angry with or fight with, what do I do?

I can’t seem to figure out how to bounce back without that surge of anger, of protective indignation over my child. There have only been two times since Monster’s diagnosis that I have had nobody to get pissed at, and both times I have found myself wallowing in self-pity for days.

There’s a good chance that the anger seethes inside of me if I can’t lash out somehow at someone or some group or some law. Depression is anger turned inward, after all. And I know there are times that I am angry with Monster, just because he makes my life difficult (is that the most selfish thing you have ever heard?) and of course I know this anger is wrong, so I keep it in.

And I repeat to myself, as often as necessary, “this child is a gift, this child is a gift….” Until I feel it again. The small catching of my breath when I see him after a long day at work. The way I feel warm and happy just hearing him talk. The way I love to hold him and cuddle and make him laugh. And then I can slowly pull myself back from the edge once again.

My child has made it possible for me to feel deeply again. If I can simply let those feelings be instead of labelling them and filing them away inside of me, holding them close in the tightness of my chest, I might not have to fight others or myself so much.

Sucker Punched

A boxer in the ring must always be prepared for the next blow. He needs to be tensed, alert, watching always for the next fist flying at him. He needs to block, feign, duck, dance, and punch back. And if he does get hit, all of his muscles are tensed in anticipation, so the injury won't be so severe. He does this until his round is over. He gets short breaks. Then he or the other gets knocked out, and the match is done. He gets to shower up, go home, get a massage, and rest. His muscles relax. His mind slackens. He is able to drift idly through his life until the next match.

Today my son got sent home from his drop-in daycare. I saw it coming. It should not have been a surprise. But when the call came, I was devastated. I cried. I called my boss to tell him I had to leave, and cried the whole time (yeah, that just gives your boss such a good, confident feeling about your mental stability). I cried when I called my husband. I cried all the way to the building and the whole time I was picking him up. I wish I had been pissed. I wish I had been anything than this person I had become, someone who was wallowing in self-pity and despair.

I forget that I am not allowed to let my guard down. This is what happens when my guard is down; I fall quickly and heavily into the darkest spot in my soul - the spot where I wonder why people think suicide is so bad. The spot where I wonder what the whole point of living this life could possibly be.

And it's all because I set myself up for the sucker punch. I allow myself to relax, to trust that things will work out, that my son will be understood and cared for.

This is the second time I have been completely devastated by my son's being removed from a daycare. The first time was the same story - I was told, "We would never kick Monster out, we love him and the kids love him", two weeks before the daycare mom stood before me and said, "I'm so sorry. Monster has to go.

It's easy to forget that not everyone out there who cares for my son thinks he is wonderful and is willing to see past his occasional bad points to the sweet, loving boy we know. They have jobs to do. They have other children to protect. They are understaffed, under trained, and for the most part, underpaid. The last thing they need is a difficult, sometimes-aggressive kid to deal with. They want him out.

Is it completely jaded of me to think that if I had given these people no warning about Monster (since I am always 100% up-front about these things in the hopes that they understand what they are in for and so they can tell me right then and there that they can't be bothered), they may have simply treated him as a "Oh, boys will be boys" kid, told him to stop fighting with the other boy (because this was NOT an attack out of the blue when M used to run across the playground to seemingly randomly select a child to pummel to the ground, no, this was a boy who hit Monster and Monster his back), and given him a 10-minute time-out?

I'm starting to wonder if giving these places this information beforehand gives them the upper hand. Maybe for once, if they didn't know M's diagnosis, they may wonder what THEY are doing wrong and how can they make things work better, instead of simply telling themselves, "well, I don't know how to work with these Asperger's kids! How am I supposed to know!?" And then it's my son's fault and they can assure themselves that they ARE good caregivers, but not when they get those evil children like mine to care for.

So. My new rule is this. Stay on my toes. never let them catch me with my dukes down. Take short, short breaks to cool off and drink water, then get back out there ready to fight. I hate those sucker punches and their long recovery periods. I need to keep my gloves on. And the bell ending the game won't ring. And even as I tire more fighters replace the old. It's me, just me, against all of them.

They will not push me to that point of despair again, if I can help it. Trust no one. Don't get your hopes up, Don't trust those who think they can care for your child. They may be the ones winding up for the blow you never recover from. They seem innocent enough. But I refuse to trust anymore.

Acceptance - will it happen for hubby?

I sometimes wonder if hubby will ever adjust to the fact that our son has a disability which makes some of the behaviors hubby expects from him difficult if not impossible for Monster to master. I don’t think Monster is really limited in any way, but when hubby says things like, “He’s six now, he should be able to do these things,” I have to remind him that yes, he is six, and many six-year-olds CAN do these things. Monster maybe can do these things. But the Asperger’s means the ability may be blocked in some way, or delayed. What everyone in M’s life is working at is to help Monster map out his differently-wired mind and come to the places school and society expect him to be. This can be frustrating for Monster. He doesn’t have a map with a red “You Are Here” arrow. He knows where he needs to get to, but he needs to get his bearings first.

The other night, and not for the first time, Monster asked me why Daddy is always crabby. Now, if I ask hubby why he’s always crabby he claims he isn’t. But you hear it in his voice – the frustration, the anger bubbling just beneath the surface. He is frustrated that he cannot bark orders at this child and expect complete obedience. Not because Monster doesn’t want to do it. Usually, he will comply if he knows how. My approval and Dad’s approval are very important to Monster and he does what he can to get it. But hubby is often gruff with the little guy, short-tempered and frazzled.And it’s sad, because I know he loves him. And he tries. It’s just the acceptance that eludes him, and acceptance that would break down the wall he builds between himself and his son. It’s sad to watch. Especially when he is often very jealous of the closeness between Monster and me. It’s what he wants. But he would need to give up an entire belief system he grew up with and he seems unable to do so. Or maybe he doesn’t even see that his way to his son is blocked, by him. He seems to think it’s my fault that there is this division between the two of them. But I am the one who tries to get them to connect. And Monster is always eager to work toward Daddy. But Daddy often slams the door in his little face. And it’s frustrating as hell to be the one watching it, and feeling helpless to get these two together.

So what do I do? I try to chip away slowly at hubby’s defense system, to get him to see Monster as the special human being that he is. Is he defiant, annoying, disobedient, and sometimes frustrating as hell? Of course. But right under that behavior, there is a small child who wants and needs his parents to love and accept him and guide him gently toward his own discoveries, his own path into society and his own place where he can feel as if he fits and belongs. I do believe he will find his way. I also believe he will do it with or without his father’s help. But if Daddy were right there beside him, I know it would make his trip easier. And I think hubby would enjoy the trip too, if he allowed himself to.

Blossoming

I noticed something I do last night that needs to Stop. Right. Now. I still want to help him with everything. Dressing. Washing. He lets me, of course. But more and more if I don’t offer, he goes ahead and does it himself. Last night I caught myself as he struggled into his jammies – I almost asked him, “Do you want help with those?” and then I caught myself. I need to start giving him more credit for what he can do. I wonder now how many other times I’ve asked him if he needed help and took away a bit of his independence?

The other night we were watching videos of Monster as a baby, and there was my beautiful boy at 15 months old pulling himself up and scooting a chair across the floor on wobbly little legs. He may have learned to walk late, but he LEARNED, on his own terms, and the huge smile of pride on his face showed that it didn’t matter to him how old he was, how “behind” he might be. He was DOING it!

I can see in him the blossoming of a new confidence – a sense of himself as a person who can do whatever he wants to do. I know this is thanks almost completely to the school district’s autism specialist. She got pulled in when we were throwing fits about Monster’s getting suspended all of the time. She was the one who said to the school, look, you have a kid with Asperger’s. You don’t punish him like other kids. You praise him. You let him know what an amazing person he is.

This is a child who spent the first 5 years of his life being bounced from daycare to daycare, believing himself to be a “bad boy” because, honest to god, some of the teachers would tell him that. So you have this very smart, very frustrated, very misunderstood child who of course acts out because everyone already says he’s bad. Now, literally within months, the autism specialist has turned around the attitude of those who work with him and his whole outlook toward himself has changed. He believes in himself. He wants to do well, because others believe in him.

I’ve been trying to tell people for the past two years that my son was a good kid. Most people didn’t believe me. They pointed to his bad behavior as proof of just how wrong I was. I’m not wrong. My son is an amazing child. Does he sometimes hit and kick and tantrum? Yes. But he is so insightful, so wonderful and smart and sweet, that if people would just give him a chance they would see below the surface behaviors to the child I know. A sweet, snuggly boy who still asks for cuddles and kisses and wants to have sleepovers with me (those special nights when I let him fall asleep in our bed) even when he becomes a grownup. I hint to him that maybe there will be someone else special in his life that he may want to have sleepovers with, and he tells me, “Well, you can come too, Mama. I’ll invite you over. I’m sure you’d want to be at my sleepover too!”

Tell me again my kid is bad. I dare you.