Monday, April 30, 2012

Homestyle Mama to "I wish I didn't have Asperger's" #autismpositivity2012

"A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered."

These words in a blog post shared with me by Inner Aspie caught my attention and touched my heart because although I do not have Asperger's, my children do not have Asperger's (Alexander's Autism is in the severe ranges)... I know.


Dear Person with Asperger's,

I don't know what it's like to have Asperger's but I know what it's like to want to change yourself, to be someone else. to be accepted for who you are. and I want to tell you... don't.

Don't change to be accepted, you are better than that. You are beautiful. You are amazing. you are perfect. You are fearfully and wonderfully made. Someone who is worth your concern will accept you for who you are.

Don't think you are alone in wanting to change yourself because 87/88 people are different than you. We 87/88 feel the same way. We feel alone, we feel isolated, we are bullied too. Taking the Asperger's away wouldn't change the way others act, and it wouldn't change how you feel about yourself. Taking Asperger's away would be taking part of yourself away.

I had the same question not too long ago, what would my life be like without autism? Then like a bolt of lightning, just as staggering, just as shocking, just as heart stopping, it hit me... the question I was really asking is what would my life be like without my son? Autism makes him different. The challenges he faces in life may be a little different than the 87/88 but the 87/88 aren't without challenges themselves and his autism gives him a wonderful uniqueness. I would never wish him away. I would never wish you away.

There will always be something about yourself that you are unhappy with. I don't like that I cannot talk to people. As soon as I open my mouth, the wrong thing comes out every. time.

Cruella is insecure about her ears.

Thing1's girl wishes she could be skinny like she was before she had the baby.

Water doesn't like that he's Mexican. Your Asperger's is part of you the way Walter's race is part of him. Without his race, would he still be Walter? Without his race would he have had the same experiences throughout his life that made him the child he is today or are forming the man he will become? What about his sibling relationships? Would not having a bipolar brother, ADHD himself, ADHD brothers or a severely autistic brother change who he is or who he will be? What he has, what he deals with are all part of what makes him, well, him.

Take a step back, stop looking at yourself through your own eyes, it's just as reliable as looking at your reflection in a rippling pond. Instead, take a good long look at yourself from the eyes of someone who loves you, I bet you'd see something wondrous and way more accurate.

-Mac.

Sunday, April 29, 2012

Dear Anonymous,

Jackass struck again. and it's only on posts about Thing1. imagine that. I wonder *who* it could *possibly* be... hmmmm... what a puzzle. But, let's stick with "Anonymous" for the sake of argument. and we'll start with the obvious...

"Adult child is too Narcissic. that's a shame. he needs to step up and be an Adult Man, and he hasn't shame on him!"

Do you mean... "Adult Child is too Narcissistic. That's a shame. He needs to step up and be an Adult Man, and he hasn't, shame on him!" or possibly, "Adult Child is too Narcissistic. That's a shame. He needs to step up and be an Adult Man, and he hasn't. Shame on him!" ? Because writing it like that would indicate you passed 5th grade English. However, it could explain why med school didn't quite work out for you.

But, since I make errors every now and then, let's move on. "He needs to step up and be an Adult Man, and he hasn't..." Oh, you mean like hiding behind an "Anonymous" identity while saying incredibly rude and judgmental things about a person's child? Oh, but that couldn't be considered pussy-ish in any way, right?

But, maybe you don't have a site or an e-mail address to link your comment to, although I'm pretty sure you have a page that could be advertised... but I don't take cheap shots like that. Because that would be childish and petty.  so, we'll move on... "Adult child is too Narcissic." since we already addressed the spelling issue here, let's discuss the fact that by being incredibly rude and judgmental, apparently Thing1 does not measure up to what a "man" you, yourself obviously *must* be. "Narcissistic personality disorder (NPD) is a personality disorder in which the individual is described as being excessively preoccupied with issues of personal adequacy, power, prestige and vanity." Little hypocritical, don't you think?

But, people with a disorder don't usually see themselves as having a disorder because there is absolutely nothing wrong with them, just everyone around them. So, let's go on back to "...he needs to step up and be an Adult Man, and he hasn't..." What post did you read? Did you even bother reading it or just see who it was about and comment?

And finally, what in the world would ever make you think that posting a comment like that on MY blog about MY child would be acceptable? A blog which I stress is a rudeness and judgment free zone with NO exceptions!?

Your actions so far in how you are dealing with this whole Thing1's girl choosing him over you is showing her and every one else how wise her decision really was so to borrow a phrase from my step-dad... Shut up, Stupid. You're embarrassing yourself.

and if I am calling the wrong person out (doubtful), my comments to the both of you stand.

Parenting Adult Children

I don't know how many of you were with me at the time because I can't remember when it happened but... remember that lady who was totally ticked off that I flicked Goofy in the back of the head at Home Depot? The one who was a perfect parent and would never dream of doing such a thing because she was blessed with good parenting skills and her kids are perfect too? I don't remember her name because I'm pretty sure she "unliked" me soon after the conversation but I could really use her right now. She could tell me how degrading and humiliating and emotionally abusive it would be to flick these two nitwits in the head.

It started long ago but that's not the point right now. So, a while ago, I can't remember when. oh. it must have been last week, Big Daddy called me with a question no one else dared ask me. What would you think about Thing1's girl... NO. Don't even finish, I know where you're going and NO. If you keep up on my blogs, you know how far my "no, absolutely not, not going to ever happen." went.

So, a few days after that before anyone else mustered the courage to talk to me (why am I so scary? I don't know.) there was a conversation going in the kitchen. Big Daddy hollared at me- Hey, did you hear what these 2 dummies are doing Friday? *big sigh*, do I want to know? They're getting married. what can I say? I shake my head and walk away. The conversation continues and I hear Big Daddy ask, are your parents going? Girl says No, I didn't tell them. Of course, I have to jump in.

Me: what? You didn't tell your parents you're getting married!?
Girl: well, I don't want them to think it wasn't a rational decision.
Me: ... and not telling your parents is rational?
Girl: Well...
Me: Well, nothing. that's not cool. If they aren't going, I'm not going.
Thing1: You weren't invited anyway!
Me: suit yourself.

A few days later, we're celebrating Thing1's 18th birthday which turns into a discussion on Girl and the Queen moving in. I state my case on being against it which isn't so much about their relationship as their interaction and the effect their interactions have on the household and the Queen. It pretty much ended with Big Daddy making a decision to take it 2 weeks at a time with the conditions I put on it, which broken down into the simplest terms are don't bring your crap into my house, play nice and take care of your own kid. When I expressed my concern about their interactions the Girl tells me "Oh, well, I'm using this as a trial period anyway." "Ok, soooo, you are going to get married and then have a trial period?" well, the wedding never happened.

Then one day... possibly 2 days ago... I had a *slight* disagreement with Big Daddy over laundry. I don't remember the exact words that sparked my temper but I seriously lost my cool. They have been officially living here for what? a week? and every single thing I said would happen has happened. The first few days were good (like I said they would be until they thought they had us fully suckered) Then one morning Walter ended up with the Queen while the Girl slept. When he left for school, I was left with the baby. My problem with that is, I don't like mornings either but I have to get up with my own kids, when they leave, I get my time. I don't want to give up my time just because someone else doesn't want to get up. When I took the Queen to the bedroom to get a diaper, the Girl jumped up out of bed "I'm so sorry! Walter wanted her and he said he'd tell me when he left." Ok, fair enough. Then maybe the next day, maybe a few days later, she takes the day off work to spend with the Queen. 10:30am I get a text message asking me to watch the Queen while she takes a nap. Seriously? Hell, no. Take a nap when she takes a nap. I didn't bother responding so I think she got the point. The one serious argument they had, they took out to the car so I didn't have to hear it, have to give them props for that. BUT, how many times have I said "I will help you but I will not do it for you."? They stopped helping around the house, they stopped cleaning up after themselves, they stopped cleaning up before they put the baby in the floor, their laundry is "magically" appearing in our laundry... and THAT is fair? THAT is right? THAT is ok? Well, he will talk to them. Either he never did or it didn't make a difference.

That's not what inspired this post either. Big Daddy did. Big Daddy and Thing1 woke me up this morning when Thing1 came in wanting to borrow the car because the Girl did not come home last night. I want no part of this so I go back to sleep until Big Daddy calls to wake me up. He took the Goofy child with him to take Mom's stuff to the country and he's concerned. Thing1's Girl never came home last night.
So?
He's concerned that she's playing Thing1 for a fool.
Not our business.
But it's his son and he doesn't want to see him hurt. He's going to talk to the Girl and tell her we can't be having this. she can't be staying out all night.
No. The Girl is an adult. She can make her own decisions. What goes on in their relationship is between them, we cannot get involved. What is our business is the Queen. She left the Queen with Thing1 (her father) to go out and have a good time with her girlfriend, most likely. She probably got drunk and didn't want to drive home, which is a good thing. The Queen was taken care of, she didn't drive drunk so the rest is not our concern. We don't tell my brother when he can come and go, we didn't tell the Favorite Aunt or Mom. They are adults who are responsible for themselves.

I must say, I'm impressed with the way Thing1 handled it. I had the misfortune of being in the garage when she pulled up. When I heard her get out of the car and Thing1's voice, I was sure it was not going to be good. BUT, he surprised me. He used his words nicely to explain to her the fear and worry he felt when he woke up and she was not beside him. The voices faded after that which is a good thing because I would have heard shouting easily. It's a difficult dance to watch because he seems sure of what he wants. When the girl and Queen are around, he's careful to be home where they are, he doesn't go out with his friends and *as far as I know* does not do dumbass things. It's when they are gone that we run into problems. at the same time, she's definitely unsure. She still wants to be a teenager, still wants to hang with the girls, still wants to do her own thing. It's difficult because while as long as the Queen is taken taken care of, as long as she is safe and her needs are met, the rest is not our business, it's still our kid. She is still her parents' kid. We all still care about what they do and what path they choose in life and the decisions they make along the way.

I would just really, really like to flick them both in the back of the head and ask if they have any freakin clue what they are doing to each other and themselves. Why they can't use their brains to think about things instead of their own selfish desires? I've been where they are and one day they will look back and tell themselves, What were you thinking!? But instead, I have to understand that's not my place anymore. Adult children suck.

Saturday, April 28, 2012

Time to get serious.

I got a message today from the Special Education Advisor asking me to do a guest post. My first reaction was along the lines of Sally Field's Oscar acceptance speech. I text my husband and my best friend so very beyond excited that they chose me to do a guest post! What an honor! What high praise! The secondary reaction was more along the lines of- what!? me? why? How could anything I write possibly measure up to the great things they post? Seriously, have you seen their site? It's awesome! I haven't been very happy with my blog lately, with my writing. It seems to be lacking something. It feels ... lame and unsure, too blah, ya know? So, getting this request while a great honor brought up a few insecurities. Then I realized a truth I have known for a while but let go of for a minute.

If you are not happy, if you do not like your situation, do something about it. It's up to you because there is no one else who can make that decision for you. There is no one else to take the steps necessary to change things. Your future is in your own hands. Do whatever you need to do but you need to do something besides sit around moaning and groaning, lamenting your lot in life.

You don't like your job? Do something about it, get a new one, go back to school. They even offer online courses.
You aren't happy with your kids' behavior? Well, guess who's boss. and the answer is not "them". You cannot control your kids' actions but you can control your reaction. You don't have to be mean or cruel but you can be firm and consistent. You can direct them with love, and that includes the tough love of my house, my rules.
You aren't happy in your marriage? Fix it. Smile at him at least once every day and tell him you love him. See what happens. If it doesn't touch his heart, it will ignite his fear.
You don't like your home? Paint the walls. Buy decorations. Make some curtains. Open a window. Turn on some music. really, music will fix it. music fixes anything.

There are some things that are beyond your control such as living with parents or roommates, but you can change your attitude about it. You don't like how you're being treated? Speak up. Tired of people taking advantage? Don't allow it. Don't want to be walked on? Then get up off the floor. I told my husband from now on when anyone calls me to take their kids, I will swear to high heaven I've been drinking and therefore cannot possibly take responsibility for their kids that day. or the next day for the imaginary hangover. If all else fails, fall back on the smile.

The point is, you make the decisions that determine where your life is going. Whether you decide to decide or decide not to decide, whether you decide to do something about your circumstances or decide to lay down and have a pity party, you and you alone are choosing where you are going from here. The changes you make don't even have to be drastic changes. I decided I didn't like the way things were going, I decided to do something about it, I took a shower, I got dressed, I put on my war paint and I sat down to write. I made the decision to do something. Simple as that.

Friday, April 27, 2012

Alright, now. Enough.

Now, listen. I don't know how long you all have been following me. I don't think any one of you except maybe Nik and Rae have read every single one of my blog posts so I can't really expect you to know every detail of my life but I think I have made this one pretty clear....

Alex. Is. Not. Abused. At. School.

Now, this man from Jersey has gone from an oh, wow. That's horrible. for this I will make an exception to my Switzerland stance on school abuse to being a pain in my ass. It's like the new Y2K or Dec 2whatever 2012. School abuse is not a new issue. at all. Even wiring non-verbal kids and sending them to school as secret agents is not new. A parent did that When Alex went to Kindergarten in a different district. and yeah, the parents didn't like what they heard. It's not even new this year. Since I started following blogs, it's been vinegar soaked cotton balls, hot sauced crayons, shoving kids in duffel bags, a teacher spoon feeding kids semen. Yes, semen. on and on the list goes. and, yes, it's horrible. yes, someone needs to do something.

 but. I. can't.

I'm not in those schools, I'm not in those classrooms. I am in Alex's classroom. I am in his school. I talk to his teacher every day. actually, to take this a step further, I met a lady today. I had an appointment with Kiwi Creative Inc. We were talking about what Alex's therapists suggested and she said "Oh, yeah? Where does he go to school?" "Name of really awesome school" "Really!? My son goes there! Who's his teacher?" "Name of really awesome teacher." "OH! They're in the same class!" and we both have the same opinion of this teacher. She is amazing. We love her. She would NEVER look away as something bad was happening to one of our children. She would NEVER take part in any sort of degrading behavior. She LOVES our children with a passion I haven't seen from a seasoned teacher in quite some time. She was made for this job. She is not here for anything other than the children. and the children know it as well as the parents do.

His teacher once told me that she wishes more parents would be involved. She told me that she loves the daily notes too and I would be surprised at the number of parents that DO NOT participate in parent-teacher communication. Are you communicating with your child's teacher? Are you spending time in your child's school? Have you observed in the classroom? Have they shown you the awesome, awe inspiring things your child can do if you will let them? Alex's ABA aide showed me he could walk down the hall on his own. and go where he's suppose to be going. because they enable him to do so! They encourage him. They praise him for his efforts. They send home notes dripping with excitement because he used a new word. notes of concern when they can't figure out why he is crying. Wondering what more they can do to comfort him. They gave him time to nap because he needed it. They make him oatmeal in the afternoon to fill his belly when snack is not enough. They had me send in a cup from home so HE could feel more comfortable using it. They let me know any time they have the slightest concern.

They do not abuse him.

and coming from Alex with the whole new non-verbal communication mixed with echolalia- his aide is his friend and she gives him "hugs". with an enthusiastic non-verbal yeah with the clarification question repeating what I think I understood. That is not the communication of an abused child. I need to be able to think clearly, to judge unbiasedly what is going on in Alex's school. I need to know that a word or a phrase is just a word or a phrase without the paranoid hysteria of school abuse from around the country constantly in the back of my mind. I do not discount the possibility of abuse but I have learned to trust my instincts and my boy's behavior. This is exactly why I do my best to stay out of the school abuse issues. I don't not care, but I care about my son a whole lot more.

Wednesday, April 25, 2012

Watch. Your. Mouth.

I know the point I want to get across, here. I know what I want to say, in general, but there are so, so many things to say I don't know where to start. There are so many very good reasons for what I want to say but I don't know how to pick and choose which ones to use.

Normally, I don't want anything to do with school issues because I worry. A lot. If there's a reason to or not, I worry. This can be good in some ways but I take it beyond reason. Every once in a while, though, I can't not hear them. and this one is the one I hear yesterday...
and this brings me to my point. Parent, teacher, babysitter, brother, sister, friend, co-worker, other parents... it does. not. matter. how you are involved with someone else, it does not even matter if the person you are talking to is special needs or neurotypical, you need to watch your mouth. You need to guard your words. You need to #2: Think First- use nice words, use nice words to express your feelings.

Words are dangerous weapons, man. They leave scars, they leave bruises that never go away. One small thing you say can change a person forever. It can hurt them in a way no physical punishment ever could and those words, so carelessly spoken, repeat themselves in that person's mind over and over for the rest of their lives.

I explain Rule #2 to my boys this way, how would you feel? Even my parenting style is influenced by cruel words. I lead by example, I believe hard-core in admitting my own mistakes and owning my actions because of one small thing my mother screamed at me in the heat of anger- "Little Goody-Two-Shoes never does anything wrong." "Everyone thinks you are so great because you put on a show out in public but they don't see you at home." 20 years later, those words still haunt me. Those words will never go away and every time I hear someone tell me I did something right or good, those are the words I hear and I want to tell them, yeah, that's because you don't see me at home, I'm not as great as you think I am.

"Shut. Up." I hate those words with a passion. No matter how much the person talks, are they not worthy of being heard? When you speak, you want someone to listen. Why are you so much better than them? Why are the things you have to say so much more important than the person you are quieting in such a harsh way? Every time they have something to say from there on out, they will hear your words and wonder if what they have to say is really so important, if anyone really wants to hear what they have to add or if they should just Shut. Up. and listen.

Even more than that, your words will be passed on. Your words will not end with the person you say them to. As much as they hear your words, at some point, your exact words will come out of their mouth to someone else. It's an almost unbreakable chain. Your words will, without a doubt, affect more than just the one person you say them to.

Your words can build them up or tear them down. Why is it so much easier to use mean and hate-filled words than it is to say something nice? Don't you understand what an impact your words have? Do you realize that words can build them up as easily as they will tear them down? "You're so pretty." "you're so smart." "I love when you..." "Thank you so much!" are those words not just as easy to use? Don't you know in 20 years they will look at themselves in the mirror and hear your words? What words do you want people to hear when they look at themselves?

Monday, April 23, 2012

Partially Explaining Thing1

This comment was left on Thing1's Birthday Celebration...

"Thing one sounds like he is either selfish or has a substance abuse problem."

The answer is- absolutely.

I found this list here, there is not one thing on this list that does not describe my boy...

Parenting Awareness: Does Your Teenager Struggle With Any of the Following?

  • Family Conflict, Argumentative, Abusive Behavior


  • Blatant Disregard for Rules


  • Can't Accept "No" For an Answer


  • Abrupt Change in Personality


  • Never at Fault - Shifts Blame to Others


  • Uncontrollable Anger - Poor Emotional Control


  • Can't Accept Feedback - "Above the Law"


  • Manipulative - Pits Parents Against Each Other


  • "I hate you," attitude


  • "You can't make me," attitude


  • Substance Abuse - Alcohol or Drugs


  • Can't Keep Friends - Peer Problems


  • Fighting - Violence and/or Bullying



    • Are there signs of Mania?
    • Racing Speech and Thoughts
    • Increased Energy and/or Decreased Need for Sleep
    • Elevated Mood (Exaggerated Optimism)
    • Increased Physical & Mental Activity
    • Excessive Irritability, Aggression, and Impatience
    • Poor Judgement: Reckless, Risky, or Erratic Behavior
    • Difficulty Concentrating
    • Inflated Sense of Self-Importance
      Are there signs of Depression?
    • Loss of Interest in Familiar Activities
    • Depression - Diagnosed or Observed?
    • Prolonged Sad or Irritable Mood
    • Loss of Energy, Including Fatigue
    • Feelings of Guilt or Worthlessness
    • Sleeping Too Often or Inability to Sleep
    • Drop in Academic Performance: Inability to Concentrate
    • Inability to Experience Pleasure
    • Appetite Loss or Overeating
    • Anger, Internal Stress (Worry) & Anxiety
    • Thoughts of Death or Suicide
    Just as much as autism is part of Alex but does not define everything he is, Thing2, Walter and Goofy have ADHD but they are more than that, bipolar disorder is part of Thing1 but it's not everything that is him. He can be a big jerk. He can be selfish and disrespectful. He has serious anger issues and can be violent. I can go on and on but I have already listed his faults in the symptoms of bipolar disorder, you need to know there is more to him than that. He can be super loving, the sweet smile when he tells me "yeah, I don't like you either." the laughter and joy written plain as day on his face when he cuts up with my brother, the tenderness with which he deals with his daughter, the look of pride when he talks about her. The fierce love he has for his daughter's mother, the protectiveness he has for his brother. He is more than bipolar. He is Thing1.

    He does have substance abuse problems and not only for self-medicating bipolar disorder. Excuses will only take you so far and I am in no way making excuses for his issues. at all. I've been fighting these issues since he was 13 years old and I'm not about to give up now but the boy has not had an easy life. His mother's story is not mine to tell but there were some issues there, his Dad got custody when he was 12, I believe. By the time I met his dad, he was already smoking cigarettes and pot. His sister was killed the summer of his 13th year which magnified the problems and he turned even more fully to things to take the pain away, he refused to talk to anyone. by 14 he was sexually active and sneaking out of the house at night and drinking, 15 he had already been through rehab, 16 he was out of control and 17 he had his daughter who did calm him quite a bit. I don't know what it's going to take to sober the boy up, I've tried everything I possibly can, his Dad has tried and now his mother is involved. I'm to the point now that the only thing I ask is that he doesn't bring it home but with the bipolar "Blatant Disregard for Rules" and  "Above the Law" attitude, it's not working. This is why Big Daddy decided- enough. You're 18, you will follow the rules or you will leave.

    Thing1's Birthday Celebration.

    Last night we decided to do Thing1's Birthday Celebration instead of waiting for his actual birthday on Wednesday because of work schedules. It started out pretty easy...

    actually, I think this story starts further back in the trip to the store where every argument I have ever made came back to haunt me. We were discussing the whole Thing1's girl thing and I told Big Daddy that I thought it was a really, really BAD idea. I have many reasons for saying so but to list them all would take hours so I will list the 2 big points that voided any arguments I could have. First was we need our home to ourselves, we need to not have extra people all the time. He said "Then what about your brother and the Little Dementor? Why do they need to be there?" *insert F-bomb* Then he asked that we drop it while we shop. Fine. We made our way from Garden Center all the way through and around to the baby things. I thought I was pretty slick but Big Daddy called me out- "Don't think I didn't see that." We go finish shopping and get to the check out when he decides he wants to say something about what I slipped into the cart.

    "Why are we buying teething rings?"
    "I don't want to talk about it."
    "He's 9 years old!"
    "He has autism!"
    "You're buying teething rings for a 9 year old kid!"
    *short lecture on SPD and Autism* "and it doesn't matter how old he is, his needs need to be met."
    and then... *check mate* jerk knew what he was leading up to from the first word... "and it doesn't matter how old MY son is, he's still MY son and I need to do whatever I can to help him."
    So, I have nothing more to say.

    We get home and start supper, Thing1's girl fixed brownies (Thing1 doesn't like cake) and while we are in the bedroom writing a *sweet* message in Thing1's card, she decides she wants to talk to us. both of us. together. We put her off long enough to finish the card which I made Big Daddy write because coming from me it would have sounded mean and bitchy.

    "Thing1,
    We would like to tell you how much we appreciate the *happiness* and *joy* you have brought to us these past few years by allowing us the great *privilege* of being your parents. We look forward to continuing to be *blessed* by your presence in this house well into your 30's. We also cannot wait for the day your daughter *blesses* you just the same as you have us.
    LOL. :)
    Lots of love,
    Big Daddy & Mac."

    Once all of the kids were settled, Big Daddy decided it was time for the conversation :/

    Thing1's girl's parents "made it clear" that they "didn't want her there anymore." Not sure how close to the truth that is because her Dad is not that sort of person, but at the same time, you don't really have to be a "sort of person" to say enough's enough. We drew some lines with Thing1 last night too. As of his 18th birthday, this is not his "home", it's his parents' house. He has no rights left as far as complaining, criticising, whining because he has no reason to complain, if he does not like the way the house is run or who does what, he doesn't have to be here. On top of that, as far as his own behavior, he's living here "on borrowed time" (Big Daddy's words), he can respect our house or he can move out. As of his 18th birthday, we have absolutely no obligations toward him what-so-ever, we are no longer responsible for him which means we don't have to continue to take his crap. By "crap", I am not talking normal teenage BS, I'm talking "There's nothing wrong with me to need medication, I don't know why you guys keep saying I need medication, the doctor is wrong, I'M NOT BIPOLAR!!!" and the Goofy child bringing me a vodka bottle "Mommy, what is this?" Yeah, no more. So, I can see where parents get to the point that they say, now listen, Adult Child, enough is enough and you need to start looking to get your own place. So, it's entirely possible Thing1's girl's parents finally drew some lines of their own. For that reason Big Daddy is letting them stay here temporarily. Them staying here is completely dependant on how things go. By "things", I mean Thing1's bipolar meds and substance/alcohol abuse. If he's going to abuse it, he's going to abuse it and there's not much we can do about it HOWEVER, there is no circumstance what-so-ever that it would EVER be ok to bring that crap into our house.

    Saturday, April 21, 2012

    Alex's Room

    There is a sensory or developmental purpose for everything in Alex's room. Any toy or piece of furniture I see, the first thing that runs through my mind is what it will help him with. and, yes, mainly it's sensory that I look at because when Alex's sensory needs are not met, all hell breaks loose. Alex's main sensory issue is proprioception with some vestibular and maybe some slight (haha) tactile hyposensitivity thrown in there as well. Hyposensitive in some areas, hypersensitive in others. That boy. a riddle, wrapped in a mystery, inside an enigma. The proprioception is a biggie because without giving him acceptable ways to get the input he needs- he has accidentally self injurious behaviors, he is aggressive, clumsy and all around unhappy/unsettled. To be honest, most of his eloping happens when his proprioceptive needs are not met. He needs to run. he needs the slamming sensation of his feet pounding on the solid ground. every solid contact his foot has with the ground tells him "Here are your feet! They are right here! They exist! They are real! They are yours! feel them!?" Combining that with no fear and not recognising danger, it can go bad quickly. It's best to meet his needs in a way he can be in his body and be safe at the same time.


    Alex's bed meets that need by giving him a closed in space to feel comfortable sleeping in. He likes tight spaces that are confining in a way but still allows him the freedom to get in and out as he chooses. He would prefer a crib or a playpen but for safety reasons (getting in and out) that's not really an option. He does not like an open bed because it doesn't feel... safe. When Alex closes his eyes he has no clue where he is in space. It could be compared to sleeping on a twin sized raft in the ocean, doesn't really make you feel comfortable closing your eyes, right? When you close your eyes you have no idea where the shore is, you have no idea where the raft ends and the water begins. you have no clue where in the water you are, not up, not down... you are lost in space. What if you roll over and fall off the raft because you can't feel where the edge is? scary enough when you can see it coming. Before getting this bed, Alex preferred to sleep in the floor, where it was safe. Other things that can help them sleep comfortably that Alex doesn't respond well to are weighted blankets. If you cannot afford weighted blankets, just use heavy blankets. Body pillows or big suffed animals are good because when they are tucked snugly against them, it's outside input that says "Whoa, now. Far enough. This is where your body ends." it says, "Don't worry, buddy. I won't let you fall off." You could also use a recliner or a couch, both of which have arms and a back surrounding the sleeping area as well as thick cushioning.
     
    For sitting at the table, since we are sort of on the subject, they can't tell where they are sitting on the chair any more than they can tell where they are sleeping on the bed. Bilateral supports help them sit calmly. For the ones Alex has at school, it's a snug fit. If he moves an inch in any direction, the supports touch his sides and give him what he needs to sit calmly. At home, you could use a chair with arms. Also, a box under their feet to give them something solid to put their feet on helps ground them. How comfortable are you dangling high above the earth on rides such as the Ninja or Batman? Could you perform other tasks easily while dangling there? Could you eat, do school work or use the potty?

    Since, also thanks to proprioception, he can't tell how hard he is touching something, his TV is somewhat secured to the chair by wrapping the cords around the spindles so if he pushes the button too hard, he won't knock the TV off the chair. It's on a chair because it's solid, stable, hard to tip (especially tucked against the wall and his bed) and leaves no room to climb. I would strongly suggest securing all furniture.

    His toys are in the floor of his closet for a couple of reasons, mainly (proprioception) his need for tight spaces has him climbing in the toy box. He can't tip the closet over and give himself a concussion. It also works to cut down on the overwhelming visual clutter at night. Having the toys where I can just shut the door helps visually calm the room so he can relax. Also for this reason, his trampoline fits under the bed. It helps him transition to bed time when I calm everything assaulting all of his senses. Turning all unnecessary lights off, turning all sounds down to the lowest possible level, putting away as many things as I can to empty the room as much as possible. This cues bed time and gives him a warning right along with easing up on the sensory input that could put him too on edge to sleep. Another thing you could add in is lavender products at bath time. Alex has sensitive skin and is allergic to almost anything under the sun but baby products are always a safe bet with him. Epsom bath salts with a few drops of lavender essential oils, lavender baby bath and lavender baby lotion. The lotion has the added benefit of deep pressure massage. Alex has gotten to where he doesn't want his arms to be touched and doesn't like the feeling of me rubbing lotion- or anything- on his skin so it doesn't work for him but back when he did like it... *sigh*, lovely days.

    Proprioception dysfunction, the inability to tell where his body is in space, makes climbing, descending stairs difficult for him. Having stairs available for him to practice on whenever he wants helps him build his confidence in his ability to do so. He's doing a lot better on the bus stairs and can, most times, walk all the way down them on his own. He rarely leaps at me anymore.

    Top bunk is also a somewhat enclosed space but more open than bottom bunk. Up here he still has the feeling of being protected as well as his window. He loves to lick, kiss and touch the window or just  sit there and admire the view.

    The rocking horse pulls, like, quadruple duty. Pushing, pulling, rocking, bouncing, addressing both vestibular and proprioceptive issues. He doesn't use it anymore either but Goofy does and Alex like to pet it.

    The trampoline gives him the jolting sensation all through his body that tells him where his body ends and the rest of the world begins. This stops him from running into walls on purpose or smacking someone to get the same jolt. When you hit something, your hand makes a solid contact and tingles up your arm. For Alex, this feeling tells him where his arm is, that it is real and that it belongs to him. With the proprioceptive disfunction, unless his hand or his feet or any part of his body is right in front of his face, he has no idea where it is. He couldn't tell you the position of his body, whether is arm was raised or behind him or hanging at his side without looking at it. Unless he can see it, he doesn't know he has it. I don't know about you, but I like knowing I own my body, that I exist inside something and knowing what my body is doing and so does Alex. So, Alex does what he has to do to get the input he needs. I just count my blessings that most times, instead of a slap, he just wants a "hug" and that that request for solid contact is something he can ask for and I can give.

    Then of course, a sqishy-ish chair and a weighted blanket that has seen better days. I want to trade this chair for a bean bag chair that would kinda mold to his body and give him a good squeeze while he's sitting in it. He does have a birthday coming... but for now, this will do for the "hug" sensation he needs when people-hugging just can't cut it. Here lately, weighted products aren't working well for him. He finds the feel offensive. BUT, Goofy loves it.



    A few more things I plan to add are a platform swing and a ball pit (he had one, he popped it). But first, I need to figure out how to work it in without overwhelming him. Too much is just as bad as not enough. I'm thinking about the extra space in the basement. Making a sensory room since there are 2 of them now with different needs.

    Platform Swing- Someone shared this blog post with me on making your own platform swing. For the Goofy one, I took a hammock, folded it in half to where both ends met, sewed up one side and hung it in a doorway. It serves the same purpose as a fabric swing. Autism Daddy hung a regular swing set swing in the doorway for his boy.

    Ball Pit- He had a small blow up pool filled with balls but it popped. I plan on getting another blow up pool in a larger size made of more durable plastic.

    Another thing we are working on is bilateral integration. That one is simple enough to add in the form of small toys that don't take much space, just take a small mesh laundry bag, stick a ball in it and hang it from the ceiling around chest level and play catch, it can easily be taken out to practice kicking. Alex loves nesting and such- which requires the use of both hands if done properly ;) Take a coffee can, cut a slightly over sized slit in the top and have him put poker chips (big enough to not be swallowed) in. This one works on bilateral and fine motor skills. He also likes the stacking rings. He even uses his teething rings and sippy cup to play this game- bilateral integration, hand-eye coordination. Shape sorters are awesome for bilateral integration because you have use one hand to turn/stabilize the box while using your other hand to turn/insert the shape. Riding a bike requires both sides of your body working together.

    That's what I have so far. Do you have ideas?

    "we will insist on change."

    Have you ever been in the spot where you are riding down the road with your best friend in the driver's seat, confident in their ability to get you where you need to go, every thing's going smoothly, you hit a few bumps, swerve a bit to miss some road side debris but over all, nothing out of the ordinary, just a nice drive... Then out of nowhere you look up and you can see an accident coming but you can't say anything and just brace for the impact that does or does not come? Yeah, we're there.

    Mom moved out and now Thing1's girl wants to move in for a few months until she and Thing1 can get their own place. Everything in me is screaming HELL NO! No, please, Dear God, NO!

    Autism Answers shared this post on my page as if she knew right at that exact moment I would need to hear it. This is the part that hit home for me...

    "Sometimes what we can do for others is be ourselves and offer knowledge, say no to getting sucked in and understand that we have a right and a duty to take care of ourselves and let others do the same their own way."

    Over the past several years I have taken in many strays.

    • When Thing1's friend got kicked out and needed a place to stay, I took him in. Didn't end well. Involved drugs and the threat of arrest and a 12 hour hold (for me) and temporary foster care for the goofy child until someone could pick him up because the friend involved Thing2 in his crap.
    • When the Favorite Aunt had no place to go with her daughter, I took them in and tried to give them a home. Didn't end well. Involved drugs/ alcohol and complete stupidity.
    • When the Favorite Aunt moved back in with her husband, leaving her children to finish the school year, I took responsibility for them. yup, problems there too. including an investigation by the school system into why so many kids from this address were attending their schools.
    • When Thig1's girl "needed" a place to stay because she "couldn't" go home, I took her in too. Resulted in a complete disregard of rules, pregnancy and foolishness.
    • When Mom had *issues* and needed to get out of dodge in the middle of the night, I made her a room with no question of what "should" be done.
    All of these, I dragged Big Daddy kicking and screaming the whole way. He says we need to take care of our own family and not worry about the others. I say they are family. You can't turn your back on family. They are blood, it's your tribe, your clan. That means something. If they need you, you need to be there. But, as a famous author once said... ‘Insanity is doing the same thing over and over again, but expecting different results.’ If it's not working, change your approach. duh, right?

    Now I am looking forward to having our home, I am looking forward to being relaxed and calm and having a laid back home environment. I am tired of allowing myself and my family to be sucked in. Big Daddy was right and I am ready and willing to admit that. Except now, in true Big Daddy fashion, since I "took" his part of the argument, he is switching over to my side of it. Every time. Now I say no, it's not a good idea, actually, it's a very BAD idea. and I list my reasons, which happen to be HIS reasons for not allowing such things, in response he lists his reasons for wanting to allow it, which happen to be the reasons I gave him. Now, switching sides, this isn't a person by person, issue by issue thing. We do this in singular topic, normal everyday things, at times mid-argument. I don't know for sure yet what the final verdict will be on the girl and Queen moving in but judging by the discussions so far...

    Oh, boy. I believe the "car" in front of us just slammed their brakes on. This is not going to be good.

    Friday, April 20, 2012

    A hard pill to swallow.

    I hate admitting I was wrong. Like, really, really hate it. So, I won't. Instead, I will say the doctor was right. *partially* I don't have to tell him that, do I? Actually, yes. I do. We have an appointment I don't remember when, hopefully I wrote it down but it's 6 weeks from the last appointment. In this appointment, I have to tell him what I have done to implement a sort of BIP for the Goofy child and how it's going so far.

    and so far, this is what happened... apocalyptic chaos from the legion of evil. Serious. Not one thing changed, not one kid got a prize, not one rule went unbroken. Even now, right this minute, the Goofy child is bouncing off the walls and not even trying to listen much less obey. and his irritating behavior is not "bad", just annoying so it doesn't warrant time-out. Pretty much, tweaking the homeschooling system, not working.

    Then I figured out why. I was reading the papers he gave me about the point system or something, I can't remember what it was called but I left the papers in my car which Big Daddy took to work because I've been trying to talk to him about it for 2 days and he won't be still and listen.  I thought today would be a good day to talk to him about it but madness and mayhem. You know, the usual. Anyway, I was reading the papers he gave me and it dawned on me that the homeschooling system is not working because it was designed and used for short hours, not full day. So, he's right in the fact that we need a reward system. tickets and such.

    and so...






     Daily prize is a piece of candy (I'm not liking it.) for 10 tickets each.

    10 tickets/day is still saving 14 tickets/day to use toward...


    A weekly prize of a toy they can buy for 75 tickets each.


    which leaves 93 tickets/month in savings.


    which means they will have to do something extra as far as chores or nice things to earn an extra 7 tickets to pay for a monthly treat. and since it may take them a while to understand that, it means I don't have to figure out what could be an awesome treat to cost 100 tickets/ month. The only thing that I can think of is fishing and feeding the ducks. but it's bad enough I have sunk to monetary type bribes, do I really want them to have to pay for adult attention?

    But no matter who says what, I still insist my time out is just freaking fine, damnit!!!

    What I don't understand is this is not my first ADHD child, why have I never had quite this much trouble getting a brat to behave?

    Thursday, April 19, 2012

    Why/How I spend my time...

    Autism Daddy wrote a really good post about why he does what he does, or doesn't do what he doesn't do. He is not attacking anyone, he is actually telling others that they are needed and doing a good job. However, even understanding that, I am in defense mode as of yesterday. Yes, I know people suck. I know they do what they want to do. I know I should not let their negativity drag me down or suck me in and they won't. I'm working on an attitude adjustment and letting it go.


    Added to yesterday's post-
    ***added note: The L.D. did not chip his tooth on the bed. He chipped his tooth much, much later in one of his many overly-active overly-physical activities and it broke around bed time.


    I try to blog daily and am on facebook a lot. I have a few hours in the morning that Mom takes over with the kids and lets me do what I want to do. What I want to do is share my story to let you know you are not alone. What I want to do is help you find the information you need to understand/raise/help your kids. I want to give you the support that you need because having support is very important. and it's about all I can do. Throughout the day I get "breaks". People with jobs get a break here and there to relax for a few minutes or whatever. I give myself breaks. I give myself breaks more frequently because, well, it's an advantage of being "self-employed" as a Stay At Home Mom. I take about 10-15 minutes every hour to sit down and check in.

    I read blogs, I follow pages because I need support too. I read blogs and follow pages because I need resources for information for myself as well as to pass on to you. I promote the pages I like, pages that mean something to me, because I think they are helpful for one reason or another. I don't do shout outs without without reason and I do not ever do shout out for shout out. I promote pages and blogs because, if they help me, they may help you too. I *try* to keep up on what's going on to keep myself updated and to update you as accurately as I can.

    My time online does not affect anything I do in real life, except the occasional a little too browned hamburger. One reason for this is Big Daddy loves me and supports me and got me a laptop for Valentine's day so I can take you all with me anywhere I go around the house. I talk while I work. I have routines, schedules, systems throughout my entire life and you guys are on a system too.

    I get involved (or at least read, if I have nothing to say) in every discussion because, I want to hear the answers too. I want to share your joys. I want to know what you guys are thinking. I want to know what is going on in your lives. I want to know I am not alone. And most important, on my page, there will be no foolishness or judgement. I don't want to go looking for help and be attacked instead and you won't be either. My page is to help you in whatever way you need to be helped, not to tell you how bad of a parent you are. We get enough of that in real life.

    I don't live and breathe autism every minute of the day. That is why I need you. In real life, the word is hardly ever uttered and when I want to talk about it, there is no one to talk to. I know a lot of you have the same problem, the same need for people who know.

    Lastly, I need to do something. I cannot sit around all day being useless. I don't work outside the home, being a Stay At Home Mom is rewarding and I love it and I know I'm making a difference for my children but I need to feel like I am making a difference somewhere. I need to not sit back in the comfort and safety of my own 4 walls and feel cut off from the world and feel like I am just stagnating. I need to, I have to do something. If not this, then what? I love what I'm doing. It may not be making tons of money but I love it. My page, my blog- this is all for me. It is my selfishness and as long as my real life work is done, as long as my kids are taken care of, as long as my husband is happy, I'm going to keep doing what I love.

    Wednesday, April 18, 2012

    DFS Investigation

    Mom got a phone call this morning from a worker in the Children's Service Division of DFS saying there have been some allegations and she would need to come out and see the Little Dementor and the Tiniest Supervillain today. When Mom told me I called the worker back to see if those were the only 2 children she needed or if she needed the rest of them home too since 3 of mine are in school. She said the allegations did not include my children so she would not need to see them. Alright. before I could I call my brother to let him know so he could be here at the appointed time, I had a voicemail on my phone from the Children's Service Division of the DFS of another county. She was looking for me and Walter. WTH? What does Walter have to do with any of this? My brother called me back and I talked to him before calling the other worker back to see what was going on. She asked about the L.D. and T.S. how everyone was related, what time they spent here, why here etc. I asked her what the allegations were and she said she was limited in the amount of information she could give (which, I already know) but ... the first time she told me the allegations I thought I misunderstood because the kids chose that exact moment to go loud and crazy. I asked her to repeat that and she told me that allegedly, and she stressed allegedly and explained what allegedly means. Thinking- I know allegations. Dear God, woman! do you not have access to my file!? but I told her I understood "allegedly" so she proceeded with *someone* threw the L.D. on the bed and made him chip his tooth. I'm shocked, thinking of who could possibly have thrown him on the bed hard enough to chip his tooth and they must be talking about when Goofy and L.D. were jumping on the bed and the L.D.'s teeth went through his tongue. but that was, like, last December! Why would they call after more than a year? That doesn't make sense. So I asked Mom if he had a chipped tooth, he does. The woman asked if his tooth hurt so I asked the L.D. about his tooth and if it was hurting. He said no, the woman was satified with our conversation and told me a local worker would be out to lay eyes on the children. Ok.

    It was only later that I realized this was not the normal pulled out of thin air completely off the wall and extremely vague accusation usually made by the school (proprioception- google it) or other parents during a custody battle. I knew exactly what they were talking about and I knew by the county it was reported in there are only 2 people who could have reported it. This call was directed at ME by members of Big Daddy's family. The first time the woman told me the allegations, I did not misunderstand. The allegations were that I threw the L.D. on the bed with enough force to chip his tooth. and I know the exact moment they are talking about. Thank God for all those other DFS calls, because of them I work hard to remember every moment of the day, I watch every bruise, every mark. I remember where they were, what happened to cause them, and when they appeared.

    It all started yesterday morning. I was in the garage with the door open working on my blog and checking my page while listening to Goofy, the L.D. and T.S. playing in the back yard. I told you guys all of this yesterday :( but anyway, Goofy screamed. When I took off running for Goofy, L.D. took off running away. When he got to me, I grabbed him by the shirt and walked him back to Goofy to figure out what happened. Goofy told me that the L.D. smashed his hand with the landscaping stone (my brother says that's what they are called). I asked the L.D. why he would do that and what he was thinking. I held them both by their wrists and walked them into the house, put the L.D. in time out and went to see what was going on with Goofy's hand. I called Big Daddy to see if he thought we should get it X-rayed. I told L.D. that what he did was unacceptable and BAD. I took him downstairs to Mom and plopped him on the bed- carelessly but without force- then took Goofy to the ER to find out it wasn't broken, just bruised. When I got home I gathered all 3 of them, explained the rules, stressing KAHFOOTY, and included the other 2 in Goofy's behavior chart and reward system.

    I don't understand how this even happened. I don't understand why they (family) would believe that I would be forceful or what would possess someone to say it in the first place. I told Big Daddy that this really hurts my feelings because, of all of the adults in the house, aside from my brother, I am the least hands on person in the entire house! The way we grew up taught us what we don't want for our kids. Even spanking is an absolute last resort reserved for really serious/ dangerous behaviors.

    but, anyway, I'm not really in a talkative mood today so I won't be on my page. Instead, I believe I shall spend the rest of the day beeing moody and sulking followed by a serious discussion Big Daddy is determined to have tonight because he is furious. I will be back on tomorrow for sure.


    ***added note: The L.D. did not chip his tooth on the bed. He chipped his tooth much, much later in one of his many overly-active overly-physical activities and it broke around bed time.

    Tuesday, April 17, 2012

    Setting Schedules/ Routines/ Rules for children with autism


    A lot of people ask how I do it. My initial thought is "I don't know." or "lol, I don't." Which, thinking about it, isn't all that true. I guess I have to thank Flylady.net because although I don't follow her whole system all the time (fluttering, I believe, is what that's called), she taught me about routines. When I meet a new Autism Parent, the very first thing I suggest is ROUTINE, set a schedule because it's that important for our kiddos. I get the same answer I always gave- I can't. Our time... Our hours change... I can't stick to it. but here's the beauty of it...



    It has nothing at all to do with time.

    It has to do with order. I've talked about Alex's Morning Routine, I've talked about our Evening Routine, I've described my cleaning routine a few different places and I've even talked a bit about Walter and Cruella. We have routines and our schedules are a list of things that get done in a certain order. Of course, we have to have a time to get up, a time to catch the bus, a time to come home and a time for bed, which sets the general time for supper because we need a certain amount of time to do the things between supper and bed but for the most part, not so much based on time.

     

    Routines do not have to be the exact same thing every single day.

    Oh, yeah. I've had that problem too. Well, we can't do it! We have other things to do outside of the house! Routines are not just Groundhog Day, made for one day over and over. You can have weekly routines and monthly routines, quarterly routines... and they don't even have to happen every single time. Our appointments, as far as I can control, are always on Mondays. We don't have appointments every Monday but when we have appointments, it's a good bet it will be on a Monday. Sundays are usually our shopping day. We don't go every Sunday, but if Alex is going to go with us, he can usually count on it being on Sunday. Thanksgiving happens the same time every year, Christmas happens the same time every year... see? Routine. Expected.
     


    You don't have to jump in all at once.


    Setting a routine for an entire day, an entire week and an entire month right off the bat and deciding you are going to start it right. now. is setting yourself up for failure and guaranteeing a rebellion from your little heathens. Pick one area such as morning, afternoon or bed time, make a short (very short) list of no more than 3 things you want to start with. We started with bath, teeth, bed. Then build on that. as you get into the routine of what you already have set, add one or 2 more to the list until you are just naturally following them.

     

    Use visual aides or anything at your disposal to help you cheat your way through.
     

     

     This is Goofy's schedule. He doesn't ride the bus anymore but he like to be able to do these things all by himself and to use a dry erase marker to check his things off. This is the same type of schedule Walter "doesn't need" anymore because he "knows" what to do. except Walter's were words and Goofy's are PECS because he can't read yet.
     These are the "Chore Rules" for the older kids. There is a time limit on how late chores can be done because they would wait for me to go to bed and "do" their chores then the next morning when it was trashed they'd say "Well, I did do it but they messed it up." which totally happens so I couldn't call bullshit :/ So, now chores are to be done before I go to bed and you don't want to mess with my bed time. They do not get rewarded for chores other than to have a roof over their heads and housekeeping skills for when they get out on their own. Their rewards are freedom and cell phones.


     This is the chore list. Chores to the left, days at the top with a rotation of who does what. There is no reason every child in the house cannot to something with the exception of Alex who *sometimes* puts his plate in the sink. I could work with him on picking up his toys... that's an idea! It could go along with his grouping like objects goal at school...




     

     The calendar is sacred. If it's not on the calendar, it's not going to happen and I don't care how "important" it is. Well, I do make some exceptions when the day is empty but, still, principal. I need to know what's next too. If someone messes with my routines, etc, I'm a freakin mess.
     

     This board holds important things like physical forms that I forgot to put back up when I cleaned it off and I really, really hope I didn't lose it! and other important things like the evidence of my uber-talented little artist and Goofy's one #7 behavior day and Walter's As.
    Then, of course, this is the behavior charts. Which I talked about yesterday.








    The other thing I use a lot is my cell phone. I have alarms set for
    7:30am to give Walter and Goofy their meds,
    7:45am to get Alex on the bus,
    3:25pm for Walter to come home,
    3:45pm for Alex to come home,
    4:00pm for Goofy's meds,
    5:00pm for Alex's Miralax Mon, Wed, Fri,
    7:00pm for Goofy's Melatonin

     
    They need clear, set in stone rules/expectations and they need you to stick to it.

    Pick just a few that are important to you. The behaviors you have the biggest issue with. Again, you can't make a big list and start right. now. because, again, you will set yourself up for failure and overwhelm your kids. With Walter we started with 1. we added things as issues came up with him and with subsequent children and 12 years later, we are up to 5 rules. You need to make sure they understand the rules and how the rules apply to their behavior but also you cannot just say- don't do that, that's a "no.", you also need to give them an alternative acceptable behavior model. "It's not ok to___, I would rather you do ___ instead." For example, aggression. "It's not ok to hit when you are angry, I understand you need a physical release for your anger, why don't you take this shovel and dig this certain hole I need to help you calm down?" depending on their ability level, of course. With our lower functioning kiddos, you'd probably get a better response with sensory input... pushing, pulling, jumping, running, deep pressure...

     

    Above all, the key to success is consistency.
     
    If you see a behavior that breaks the rules but you are not able to do anything about it at that exact moment, put your blinders on. DO. NOT. let them know you saw it or they will think you allowed them to do it and your credibility as an authority figure is shot.  

    Monday, April 16, 2012

    Good Lord, have mercy on me. Goofy's results.

    So, if you follow my facebook page, you probably know by now, Goofy got a diagnosis of ADHD-NOS. This is fine with me, it will get him started with the services he needs to succeed in Kindergarten and hopefully beyond until we can get enough documentation from another source (school) to get a diagnosis that better fits. One thing I liked about this appointment is, unlike the first time around, this doctor did not give me the whole "here's your diagnosis, good luck with that." non-helpful whatever. This doctor wants follow up. He's telling us to talk to the pediatrician about medication, he's giving us very awesome information on ADHD, things I had no clue about. He's also helping us make our own version of a BIP. Sort of. He gave us a bunch of paperwork on how to set one up, how to deal with behaviors. Of the entire meeting, this is the part that has me and Big Daddy butting heads because Big Daddy wants to follow the doctor's advice and do it the doctor's way. I want to continue a similar system that I already have in place.

    This was Goofy's homeschooling system and it. was. working. Now, as you all know with autism, change is not good. Change is bad. Change will throw everything into chaos and meltdowns will reign. ADHD is not all that different in that aspect. Why would I take a perfectly good system that he already knows, already accepts, already understands and is already motivated by, throw it out the window and start all over with something new? That doesn't make sense to me.

    Each day Goofy has goals. When he meets the requirements of each goal, he gets a star. If he gets a star for every goal that day,

    He gets a small prize and a sticker for the day. If he gets a sticker for every day in the week, he gets a larger, more meaningful prize. A toy, an activity. Something that he is willing to WORK for. Somewhat along the lines of ABA reinforcement.

    I understand that this system is geared toward meeting goals to be Kindergarten ready and This chart would need some changing to include the behavioral goals.

    He already HAS behavioral goals. He knows them. These have been the rules for as long as the boy has been alive.

    1. (most important, never break rule) Don't hit girls.
    2. Think First.
    3. Respect Your Elders.
    4. Never Hit Anyone First.
    5. If no one is...
         1. broken
         2. bleeding
         3. missing
         4. in danger
         5. dead
         ...I don't want to hear about it.

    You will notice that these goals are numbered in order of importance as well as having obvious tells for where the goals fall on the list. #1 is most important. #s 2-4 have an amount of words that match the #, #5 has 5 instances in which tattling is acceptable. I believe each one of these rules represent every behavior we find unacceptable. The only change I feel needs to be made is to make sub-rules to explain how each rule relates to Goofy in particular in terms he is already familiar with. Such as...

    1. Don't hit girls.
    2. Think First.
         -use nice words.
         - Don't throw fits, use your words to express your feelings.
    3. Respect Your Elders
         - Don't yell at Mommy and Daddy.
         - Don't call Mommy and Daddy names.
    4. Never Hit Anyone First.
         - KAHFOOTY
    5. No Tattling.  If no one is...
          1. broken
          2. bleeding
          3. missing
          4. in danger
          5. dead
          ...I don't want to hear about it.

    The doctor also does not like my "version" of time out. My rules for time out are you get one minute for every year of your age (right), your time does not start until you are facing forward quietly (wrong) and if you are not quiet/calm for the time the timer is going, I will stop your time until you are quiet/calm and restart it when you have control of yourself (wrong) and no one is allowed to talk to the offender in time out and should ignore anything the offender says (right). This is working for us (kind of) It worked pretty quick for Walter from what I remember and Goofy is down to less than 30 minutes total. The doctor says time out is time to calm down. I should start the time and let him scream his way through the 6 minutes. If he is calm at the end of 6 minutes, he can get up. If he is still screaming at the end of his 6 minutes, I should re-start it and give him that 6 minutes to calm down. I'm not understanding the purpose in his version. Where is the motivation to be quiet and take your "mild punishment" like a man?

    He already has routines, he has a schedule and his "reward" is he gets to use a dry erase marker (schedule is in a picture frame with a glass front) to check off the steps as he goes. Being able to give himself marks and visually SEE that he is making progress to complete each "goal" is something he loves to do. it is something he is willing to work for. This schedule is the basics in his morning, afternoon and evening routines. He is, for the most part, pretty self sufficient due to this routine/ visual schedule.

    This is the only part we are disagreeing on. I agree with him that there are too many cooks in the kitchen, however, we are both at a loss of what to do about it. We tried to talk to the others in the house about it and ended back on this part, the one we disagree on. He thinks Goofy needs tangible "stars". Fine, that's ok, give him tickets or tokens or whatever to collect in a coffee can but I don't understand starting over.

    Family Easter: What really happened.

    The day started out pretty normal- organized chaos. I packed all of the important things in the backpack- ducks, balls, teething rings, diapers, wipes, sippy cup. My friend Rae suggested taking my laptop for Alex to watch movies on. Brilliant! I never thought of that! and we found an even better solution that benefits both Alexander the Great and Big Daddy. This rent to own place we shop to get furniture had a portable DVD player for $100 with a 3 month same as cash deal. Alex's birthday is May 25 and we always have a hard time finding something he will enjoy. a portable DVD player will be enjoyed and used long term. So, we got it. and he got it early for the purpose of this trip to the park. So, anyway, we pack up and head out. We had Thing2 and his friend, Walter and Alex. My brother had Mom, Goofy, the Little Dementor and the Tiniest Supervillain.

    Our first stop was Wal-Mart for soda, chips, dip ingredients, plus some bananas and cheesy popcorn for the wild one. We stayed in the cars while Big Daddy and my brother ran in to get the stuff and take L.D. potty. I love having these easy moments where you can relax and just enjoy the kids. We rocked out to some older music, I listened to the boys insult each other and goof off like brothers do, and worked with Alex some more on "yeah" (the non-verbal yeah). Once we actually got out of the house it felt care-free and fun. Like the good old days when I was able to hang out with family.
     While helping Big Daddy and my brother load up and ice down the goods they gathered my cousin drove past us in the parking lot with a honk in his big ol' truck. It was then that I realized, I don't really miss the old days, I don't really miss being young, I miss THIS. I miss family and the anticipation of seeing them. I miss throwing off the expectations I put on myself trying to "keep my head above water" taking care of this bunch just for a day. I miss enjoying family instead of just meeting/anticipating their needs.

    Seeing my boys start out shy and uncomfortable was an eye-opener for me. THEY need this as much as I do. I, alone, am not enough for them. There is an very important need that I've been overlooking and that is the need for family connections. For strong, deep, solid roots. Growing up, I didn't spend unlimited amounts of time with this family and I spent my fair share of time being awkward and shy. Hell, I'm still awkward. but I know without a doubt, I belong to this family. I am part of "them". My boys need that.
    I let go of Walter and the Goofy child and accepted the "village method" of the family. I know they would never let anything happen to ANY of these lovely children and I know my boys will never be comfortable being included in the family if I'm hovering making sure everything is just so, and so, I let go. It was surprisingly easy. They had fun, they played with their cousins and loved it. Walter was more attracted to my cousins since most of my cousins' children are more Goofy's age and younger and he's looking for role models. I'm perfectly fine with that because, I have to admit, I have some pretty great cousins. Walter even got to see my brother K (didn't know I had another brother did you? I do. and 3 sisters. This brother and a sister belong to my Dad.). I saw his baby boy for the first time not in pictures and he is so perfect! He looks just like his Daddy :)

    The whole time we were here Alex did wonderfully. He was calm, content. He's almost always content but being out of his element, at a park with crowds of people, wide open spaces, a pond in one direction and a creek in the other, I expected a bit of rebellion from the boy but he seemed to feel the same as I was. Satisfied to be an observer of the wondrous family. I would love to go person by person, frame by frame and tell you all about each one of the family members to tell you how incredible each person is, how happy I was to see them and each fantastic scene we saw but there is too much to tell. I would love to tell you every move Alex made and my surprise at how well he accepted being there. All the ways my family tried to make sure we were included, make sure we were ok, make sure we were having fun and their concern over Alex's safety. The Aunts even made a plan of how to guard the creek during the Easter egg hunt involving the adults of the family. Alex doesn't care about hunting eggs, so we didn't do the egg hunt. Even so, that they were thinking about it and making a plan since it was the one concern I told them about, meant the world to me. I know there are plenty of other small children and Alex probably wasn't the only one they were planning for but, still.
    This one, right here, is the crazy cousin. Who doesn't love the crazy cousin?