SPD MOM: Special Needs support in OBX.. YES!!!

Well, getting the school information from the Outer Banks, as far as referring the boys once in the county, and seeing what sort of support is offered for SPD and Autism.  Quite a lot actually.  I am very impressed with the wonderful responses and postive conversations I have had with the head of the preschool program in Dare County, as well as the Dare County Children and Youth Partnership.  There is an ASA support group in the Outer banks, which meets twice a month, once for speakers and once for a coffee gathering.  Looking to possibly be a parent support person, once we get down there.. Never thought about it, quite frankly, but I really would like to become involved in the community with regard to special needs.  There is also a social group for Tom, which meets twice a week, he will be going to that.. So, the transisiton should be fairly easy, I am hoping.. needing to send IEP's, evals and such.. Doesn't sound as if "special needs" is a taboo term in the OBX as it is in our school district.. I guess I shouldn't say that, but its how I feel, I and other families. So, what else.. we had a giant yard sale, getting rid of just about everything.... Really being proactive with scaling down our lives, getting rid of objects that just are, "objects," and not much more.  Decluttering our lives has started to give us more energy.... and more energy with which to give each other.. Christopher had another meeting with his Neur Ped., and we are now moving onto the heavier drugs.. only because the Clonodine kept waking him up 4 times a night.. not good when a child is already trying to moderate themselves.. So, the new drug is called "Risperdal." Used to treat behavior problems, schizophrenia, autism and tourette's syndrome, more specifically, the tics.  Supposedly it will clear the thinking, improve social interactions, mood, expression of mood (ie meltdowns), and is a mood stabilizer.. In other words, Chris is going on prozac I guess. So, the bigger question becomes, are we drugging him for society approval? for school? for peers? for him? for us? I guess the lightbulb moment came when he admitted to "hiding his tics" in school behind his shirt, so nobody could see.. its here.. the school crap is here, I mean the peer shit.. the "he's different" stuff.. I thought maybe we could avoid it.. like you know, in pre-school when kids are too little to care if someone is different. I think Chris is picked on more than we are aware of.. he is very careful what he reveals, although what he says is always the truth,(another nice thing about Aspergers'), and he is tired of tics, managing them, frustrated..  It pains us to see his frustration, as we both have gone through the gauntlet at his age.. Society is cruel, not all, but many.  I think its just recently that "different" people are celebrated.. like Bill Gates, the Dungeons and Dragons kids I knew, etc. What would the world do without these "different" people?

SPD MOM: "Just great...the lunch lady picked on you?"

So, its been one of those weeks here.. when, like other blogs I have read, the kids are bouncing off the walls, rolling on the floor, kicking balloons when your trying to talk to them, and up down up down from the dinner table.. (maybe THAT is why they invented duct tape?) So, our biggest deal this week, were meltdowns at school, due to too much "info" to process in the ears, and too much handwriting.. it was all "too much Mom." And then there was, "the lunch lady." The lunch lady whose job it is to make sure all children are behaving while eating their meals.. this includes, apparently, controlling tics.. that is, facial tics.. So, Chris comes home, and lets me know he had a horrible day.. well, it was good until the afternoon. "So, what happened?" "Well, we had indoor recess, and we were walking around the halls, in line, to some music, and I didn't like the music, it hurt my ears, so I put my fingers in my ears during the song." "Okay, so then what happened?" "Well, another third grade teacher came up behind me and pulled my fingers out of my ears, and said, "Don't do that." "Oh... (I said). "And then at lunch? The lunch lady asked me why I was moving my face the way I do? and I told her that I had tics.. she told me to "stop doing that" and I told her that I can't stop.. and then she told me that, "I had to." "Well, Chris, good for you for trying to explain it to her, you did the right thing.. I will contact the school so they can let these teachers know that sometimes the music hurts your ears, and that your tics are a part of who you are.. don't worry, it won't happen again."

And guess what? It won't.. My husband HIT THE ROOF when he heard what happened, especially the tic incident.. And the next day, guess who had a conversation with the school Principal? I know nobody meant to hurt Chris' feelings, but the school lunch person should have left well enough alone, after he explained his situation. Like he needs MORE anxiety.. As far as the music is concerned, the Principal suggested to Chris' teacher that he "wear earplugs next time," as it is "less rude." SAY WHAT? Rude for who, the guy who made the record? The other kids? The teachers? Who cares if he plugs his ears with his hands, if that is what he needs to do to manage the sensory issue.. Can we give the kid a break? Or how about we create MORE anxiety in his life when he displaces the earplugs? And then obsesses for the next 15 minutes, worrying about where they are, and will he get in trouble, etc.. So, we left it with Chris like this, "if you can't find the plugs, use your fingers.. that is A O K...."

Yes, I get the whole, "fit into society thing," but part of me thinks its a crock of crap.. How many kids, teens, and grown ups do we have in this society, all screwed up mentally because they have been brainwashed to "fit in?" Gotta have the right clothes, the money, the toys, the electronics, whatever the Jones' have.. gotta be like everyone else.. or else... or else.. or else they just might not like me? Is that really so bad? Really? And wouldn't you rather be liked anyway for who you truly are as a person.. and not the "stuff" that makes you, you?

My Mom always worried what other people thought.. and never was really and truly free to be who she really was, or wanted to be. I grew up the same way, for many years, until one day, I stopped caring.. that was the most liberating day of my life.. It might be futile, but I am going to do everything I can, for my boys to have that freedom to be "who they really are," and like who they are in the process.. be okay with that.. They already know they are 'different,' so why shouldn't they also learn that being different is a wonderful thing too..

SPD MOM: Parenting in Denial.........

So, one of the hardest hurdles for me, for us, with regard to SPD and Autism, has been the parenting thing.. specifically the "make it go away I am in denial" thing.. I experienced that with Christopher years ago before we had Tommy, and I think I thought we both had/have it under control.. But every once in awhile, it rears its ugly, selfish head, like this morning. Chris has been getting up really early these days, like 5am, and barely getting 8 hours of sleep.. and so last night, we put him to bed early, (7:30), and told him he could read himself to sleep.. Well, needless to say, that task was more difficult for him than doing his homework.. 40 minutes later, he was downstairs, talking about noises, and unable to fall asleep. "I finished my book Mom, now what do I do?" he said. "You go to sleep, that's what you do," said hubby. Seems so basic, so logical to us, but not to him.. and that makes sense to me, but not to hubby... So, after the second time he came down.. I thought my husbands' head was going to blow off.. he didn't yell, but was so annoyed, that time stopped for a moment. So, we ended up taking him upstairs and putting him to bed again, and this time, climbed in bed ourselves.. Part of me really gets why Christopher is the way he is in his reaction.. I remember being his age, and being anxious and scared.. ALOT. I know in my heart, my husband is wrestling with his own childhood memories and anxiety which still exists today, from time to time. I wonder if sometimes, rather than embrace his sons' difficulties, he runs, because having to embrace them would be having to embrace his own memories, dysfunctons, hurts, etc.. So, is that denial? Denial of the self and of the child's' handicaps? Is that just anger at feeling trapped? Or frustration? Or what is it? I hesitate to punish Chris the way one might a child who understands, since that will bring more anxiety, and anxiety brings tics... lots of them.. I can go back to being 8, being very different from others, and having angry parents.. its a toxic mix for a child with Aspergers. So, anyway, he was up at 5am again this morning, sat in his room until 6am, then woke up hubby (not good), and told him he was done sleeping, and what should he do now? That is when Aspergers gets really, really hard for us.. That is the part of Aspergers, that is SOoooo Aspergers.. the inability to "get and understand" what is going on around you.. I honestly believe Chris is not malicious in his behaviors, they are not intentional.. he is a really sweet boy.. but, how do you draw the line with Asperger's kids? How can a parent teach them to "get it?" without loosing your sanity?

SPD MOM: No change in Asperger Tics....

So, not sure if I was expecting overnight success with the new medication, although I think I was. Started Chris on it last night, and honestly thought he would magically wake up, and his tics would be forever gone.. Needless to say, this is not the case. He woke up this morning, still bobbing and weaving.. it was a bummer. So, I have a call into the Dr., to see how long it takes for the medicine to show signs of improvement, and how much improvement are we talking here? Complete removal of tics, a reduction? Does it take a few weeks, overnight, a few days? And is this something, if it works, does he stay on forever? Yes, all questions upon questions to be asked and answered.. Need to get myself outside today.. enjoy the bit of warmth leftover from summer, before the lake affect snow begins to fly.. Need to do some leaf crunching! Have a date with the hubby tonight.. Nice to have a sitter who takes such good care of the kids.. wish we could bring her down to NC with us. Witnessed a teenager getting arrested today in front of her house, about one street away from us.. 3 cop cars, and her.. she is only about 15 or so. Both of her parents are raging alcoholics, been tossed in jail, many DWI's and DUI's, lost their licenses, etc.. divorced.. and both their kids are products of that.. It was very sad to see her all alone, being taken away.. I don't know where her Mom was, or why she wasn't at school.. Having been raised in an alcoholic family, I couldn't help but feel so very sad for her.. and could only wonder what her future would bring, if she didn't start to have some stability, and more importantly....LOVE.. Its like as parents, we only get ONE CHANCE to get it right.. Oh sure, we can stumble from time to time, but generally speaking, we really need to have solid footing in order to pass on stability, love, compassion, and trust to our children. And really, no matter what the cost, it is something we should strive to provide, no matter what.

SPD MOM: Clonidine for tics....

So, we had a very interesting weekend. Friday night started out with Chris having a major tic episode. He has had tics since he was 4, and they were pretty mild, from sniffing, to rubbing his nose, rapid eye blinking, clearing throat, saying a sound or two.. and they continued to wax and wane as they do. One that has always stayed is the face grimace.. and so we became a bit concerned when he came home from school, and his head was moving front to back, side to side, along with the face grimace.. It got so bad, he couldn't even bring an apple to his mouth to eat it, and when I tried to comfort him, calm him down, and held his head, the tic came out in his leg with severe shakes, and his hand. This episode lasted 10 minutes, and honestly looked like he had cerebral palsy.. So, I held him, and cried.. It was awful to see him so out of control, and knowing that his mind was firing neurons in a crazy fashion.. So, when hubby came down the stairs from putting Tom to bed, I told him what happened, and he watched as well. Later that night, Chris came in crying because he couldn't hold the Wii remote still.. his hand was shaking out of control. SO WHAT TO DO? We have not medicated him before, because the tics, although funky, were not affecting his ability to function per say.. but after speaking with Chris, we learned the head jerking was disrupting him in class when he was trying to write, as well as other issues.. I can only imagine what it must be like to be with peers and your body has a mind of its own.. which for tics, it does. So, a call to the Neuro Ped., was done.. and he felt Chris, for a few weeks, should go on Clonidine, which is for adults, a high blood pressure medicine. It is given I guess to ADHD kids, etc.. in hopes his brain will just, "slow down." So, we will try it for a few weeks, and if that doesn't work, there are more, "extreme" drugs he can take.. I don't believe we would be willing to put him on anti-psychotic drugs. I guess we will see. Its very hard at times getting all these things in order... I have been very tired lately with the house sale, therapies, medicines, bills, groceries, etc, etc etc... kind-of feel like a mouse on a wheel... around and around.. but then we have these great moments... like Tom and I taking a walk yesterday and crunching leaves, crunch, crunch, crunch.. or going to Critz farms for an Autism day out for kids.. that was a blast on Sunday... and all these little things in life that are good, really good.. even if they are tiny, always outweigh the heaviness I feel when I am overwhelmed, and want to get off this ride.. And if you gave me a magic Gennie, and asked if I would change any facet of my life, I still would look you in the eye, and say "no." I think I can honestly say that. My life, although difficult at times, has made me the person I am today... and I actually have gotten to the point, in 40 years, where I like me.. I am comfortable in my skin, with my mind, my body, my life.. I still have so many aspirations, but for now, they have to be on the back burner... and I guess I am okay with being okay with that... at least I am.... today.

SPD MOM: Autism Support Group!!!

Gotta love this time of year, except for the heat bills.. I just love the fall and Halloween! Tom turns three a few days before... and we are figuring out "what he wants to be." Maybe a ghost, although this morning, he said, "vampire." Things are going?? Had the home inspection yesterday, and waiting for the results.. Been looking for rentals down on Roanoke Island, Nags Head and the like.. Hard to find something for just 6 months, then monthly after that. Hoping to find a home to buy, so we don't want to get into a year lease at $1200.00 a month.. Found a very lovely home for rent in Manteo, but its very small.. extremely well maintained and quaint. The owners are so nice, live in VA, and clearly love their 2nd home.. but can we handle smaller quarters? Like go from 1680sq to 1386? Will our sensory personalities bounce off the wall? That, among others, is our chief concern. But the weather is more conducive to playing outdoors during the winter, Chris will be in school, Tom will be re-evaluated thru the district and hopefully will either be in a program or some sort of preschool. I was tickled to find out there is an Autism chapter in the Outer Banks, and they are a very active chapter. Good place to meet other moms' and parents, so that will help. Have called the Dare County district, and they are quite pro-active for special needs kids.. "Don't ask, don't tell" doesn't seem to exist there for kids like ours.. There are many programs in place to help SPD/Autistic & Special Needs kids stay on track in Dare County, and I am happy about that.. Things are definitely changing around here.. I am slowly going through all the crap in the attic.. giving things away, selling on craigslist, and eventually having a huge yard sale before the end of October. My husband is overwhelmed at times, (with a "what to do" with all the building materials stored in the garage),but, like anything else in life, play the tape till the end in your head, and you'll calm down.. I suggested Habitat for Humanity for his items, or at things he wasn't going to give to family members.. (Like what are we going to do with three giant boxes of 3 inch PVC pipe connectors?). So anyway, not much else to tell here.. just putting together all the pieces of the giant puzzle, and hoping we don't misplace any in the process!