Tuesday, August 31, 2010

Loose teeth and loud squealing

Jaymes has survived his first few days of school. He seems to like his new teacher, and I know he loves the classroom assistant, because she was the person last year who went out with him to the regular ed classroom. They get along so well. I still wish we had Mrs. Colditz- the woman is amazing, and she really cares about Jaymes. Also, she knows him, and she knows me, and understands how I am. New teacher has not gotten to experience the less lovable version of Jaymes' mom. I'm hoping I won't have to bring that side of me out this year, but I'm also fairly realistic and know that things are not going to neatly fall into place just like I would like them to- they never do. I'd probably be lost and confused without something to worry and stress over anyway.

Apparently kiddo lost one of his front teeth last weekend, and so is rocking the jack-o-lantern look. Unfortunately, tonight he demonstrated a somewhat nauseating ability to flick his other front tooth back and forth with his tongue... So, I would guess that by morning, he'll be done with the jack-o-lantern look and will have donned his "i need dentures" look. I can only hope I find the tooth this time- I suspect the first one was swallowed. I may want a baby tooth to keep for memories' sake, but not bad enough to go diaper digging for one.

The lactose free diet has been so so so wonderful for my little buddy. We've gone from 7-8 overflowing diapers from hell to 1-2 at the most. It's a miracle. Really. Yay. Totally worth all the time spent obsessively checking labels at the grocery store, and buying the super pricy fake cheese.

Seems like the new meds have become not so new. I'm guessing the honeymoon period has ended, medication-wise. We've had a lot more conflict and irritable yelling. We're also having quite a bit of the full on screaming, lying on the ground fits. He even does this with the new gentleman who comes to work with him 4 days a week. I can't really be too upset, I'm very lucky that Jaymes is not doing any of the things he was doing prior to his hospitalization. Not hitting, kicking, biting. He's thought about hitting, and started to, but that was immediately nipped in the bud. We're not going back to that- not for anything.

A lot of Jaymes' little oddities are becoming more and more frequent, and more obvious. High pitched squealing, or repeating "buttcheeks" over and over in a mouse-like voice at the top of his lungs... Not sure why he uses that particular word, he certainly didn't hear it at home. I'm not all that bothered by goofiness in public... The angry screaming/yelling/flailing in public is embarrassing, yes. I really hate that, it's humiliating, The little stimming behaviors, the behaviors that so obviously set Jaymes apart from his peers of the same age, really bother my husband. They don't bother me so much as worry me. A couple weeks ago we were in the toy aisle at Walmart, along with a couple of boys who were 7-8 years old. They were discussing which super hero looked cooler, and arguing over who had the better super powers. Jaymes was sitting in the cart, smacking himself in the cheek with his filthy stuffed jellyfish, squeaking to himself and rocking back and forth. It hits me randomly, times like these, how very different Jaymes is and how delayed he really is. It's not a grieving kind of thing, I try not to ever do that... Just kind of a "wow, I didn't see that before." kind of a moment. Weird. It got me thinking about Jaymes' future. Will he still be in diapers, squealing and flapping his jellyfish when he's in middle school? Will he ever really be able to lead any kind of a life? Will he live with us for life? Will it eventually get so bad that our only option will be to find an inpatient living situation for him? Ever since his diagnosis, the one thing I always told myself we would NEVER do is institutionalize Jaymes. I still feel like this. But, I've also come to realize that the 10 days he was hospitalized were a whole lot easier. The house was calm, peaceful, and Sierra was happy. She missed her brother, but she was so much more pleasant. For me, it's worth having Jaymes home. I prefer a loud, chaotic household. I can deal with weekends spent listening to screams and toys breaking. I don't mind scrubbing god-knows-what out of Jaymes' carpet, and refolding all the clothes he removed from his closet for the fiftieth time. I don't mind ignoring loud screeches while grocery shopping. For me, it's really not that bad. I'm used to it.

But i worry about Sierra. She is getting older, and is starting to realize that Jaymes is a lot different than the other kids. Soon she will be old enough that she feels embarrassment when we're in public and he gets upset. While we have done our best to teach Sierra tolerance and understanding of her brother's differences, I don't want her to feel the way some of my friends hve felt about their disabled siblings. One friend in particular comes to mind... Her feelings about her childhood with a developmentally delayed sister are my worst nightmare for Sierra. She spent her childhood being humiliated by her sister's "different" behaviors, and dealt with feeling pushed aside by her parents, who catered to the needs of the sister more than the "normal" kid.

I don't want Sierra to feel the way my friend feels, when she grows up. I want her childhood to be happy, full of happy memories. I never want her to feel set aside, like she is less important. I try to do as much special extra stuff with Sisi as possible... We play while Jaymes is at school, we go to the park, to the playground, to the "horsie store" (Tractor Supply Co.) I am not sure when Jaymes' differences will become bothersome to her. In a way they already have, but not to the point of it being a huge deal.

I don't know. My husband and I have been talking a lot about our fears for Jaymes' future. We try not to be pessimistic, and our attempts at "serious" conversation tend to be interrupted with very much non PC jokes, that serve to lighten the mood. It's not a happy topic, and I've always found it a lot easier to pretend that Jaymes will outgrow this and be a normal, capable, happy teen. I've always, of course, known deep down that this probably will not happen though.

I guess the only thing we can do is get Jaymes every service we can, and try to give him the tools to grow and develop into someone who can at the very least become a functional part of society. In happier news, our respite hours were approved for this year, we get 48 hours this year rather than the 60 of last year, but given the economy, I think we are lucky for getting anything at all. We were also incredibly lucky to qualify for personal assistance hours. A very nice gentleman named Anthony comes out four days a week, for three hours. He has a few different goals to work on with Jaymes, and spends time at the house, helping Jaymes do basic living skills. He also takes him out in the community, and accompanies us to places like the park. He and Jaymes are getting to know one another, and Jaymes is fond of him enough now to pitch hysterical fits in front of him... So I guess the kid is comfortable with him.

I love having the help. I have been run ragged trying to keep up with both kids, Jaymes' destruction, trying to save him from the million and one ways he tries to kill/maim himself... I did not realize how tired I was until I was at the park, not having to do it myself. It is SO nice to be able to push Sierra on the swings without having to abruptly snatch her out and run to stop Jaymes from doing whatever he was doing. She is enjoying the fact that I can actually devote some time to just her. and I am accomplishing things again. My house is clean, my work for my four online classes is up to date. It's a miracle.

So all in all, things are about where they've always been... But I'm so much less tired and frenzied. I have time to breathe. So I am grateful. As far as Jaymes goes, we don't know whats coming for him. And though my mind wants to alternate between obsessing over how bad things could potentially be and remaining blissfully optimistic (unrealistically so), I'm thinking that I'm pretty lucky to have the help I now have. We'll continue to take things one day at a time and enjoy Jaymes- loud squeals of "buttcheeks!!!!" and all.

Thursday, August 26, 2010

Cowboy & Wills

A couple months ago, right before all the assorted major Jaymes issues, I got an email asking if I would like a copy of a book written by the mother of a child on the autism spectrum, and would I write a review. I generally really like doing reviews, because I love to read, although sometimes those reviews feel a little like I’ve sold out my blog for a free book.

This was, however, not the case! I got my copy of Cowboy & Wills, written by Monica Holloway, and decided to start skimming through the first chapter to see if I was going to like it. The book really grabbed me immediately, and I found myself wanting to read more and more. No, I did not want to stop to eat dinner. Nope, didn’t want to stop reading at night, despite it being two o’clock in the morning. I found myself cursing my uncooperative eyelids for having the audacity to keep closing when I wanted to know what happened next.

I’ve read quite a few books written from the perspective of the mother of a child on the spectrum. The biggest issue I’ve had in the past is feeling like so many of these books seem to exaggerate the seriousness of the assortment of behaviors the author’s child might be displaying. Things that to me, seem trivial. I’m not saying that is fair, but I am only human and it can be frustrating to read about a child who is so much more mildly afflicted with autism than my own child, who seems to struggle with everyday basics. The really special thing about Cowboy & Wills is the fact that the author really managed to illustrate the challenges Wills was facing, without eliciting that irritated response so many books bring out in me. She managed to make her son’s challenges so very vivid, with such relatable detail, and in describing her own thoughts, feelings, insecurities was able to make the connection other book’s authors have failed to make.

As I read, I actually found myself understanding a concept that (obviously ) I should have understood to begin with. It is very hard to keep in mind that while other people’s children can do things my own child cannot, those kids have their own difficulties and obstacles to overcome that are every bit as complicated, unnerving, and frustrating as any of Jaymes’ issues. True, Wills was able to read, write, talk, understand- all things Jaymes still cannot even begin to do understandably at almost seven years old. True, Wills did not smear poo on the walls or bite the dog’s ears or yank out his own teeth. But the way Wills’ mother described her son’s autistic behaviors, along with her own feelings of fear, sorrow, and inadequacy really hit it home for me. So many books just talk about these horrendous behaviors, while failing to really show the reader the big picture and the human emotions behind those behaviors. This book did it.

I’ve never fully understood what people living with the higher functioning autism went through. Whether this was through my own ignorance, or because I only really “got” what I saw at home I’ll never know. But for the first time, I actually read a book that described a child and mother living with autism that was hugely different from my own personal experience and I “got” it. One hundred and ten percent. It sounds silly, but this really was an incredible realization for me. I obviously knew that anyone dealing with autism deserved a TON of respect for the trials they and their children went through, but I could not fully appreciate it in many cases. Cowboy & Wills did it for me. I am incredibly grateful for the fresh perspective I gained after reading.

I enjoyed the way that the book began, it was almost like two separate stories (Wills story and Cowboy’s story) that eventually converged into one. In reading, I got to go along on Monica’s pet buying sprees, which were certainly not too far from my own. Apparently a pet buying obsession early on after diagnosis isn’t entirely unusual! I feel so much less insane. We too went through rabbits, cats, dogs, lizards, hedgehogs, gerbils… Though after awhile it became evident that Jaymes did not care one bit for those critters. It was only when we finally got to horses that Jaymes showed an interest. A bony, starved old gelding named Buddy turned out to be our “Cowboy.” And like Cowboy, Buddy was with us a much shorter time than he should have been.

It was such fun to “see” Wills’ transformation due to his wonderful dog, and really, one has to read the book twice to fully appreciate all the little things that Cowboy brought out in her boy. I love the creativity and the little oddities in the ways both Cowboy and Monica managed to bring out the best in Wills. Bringing Cowboy to school, using her as a connection to jump start conversation between Wills and his classmates, or to set up play dates… A bit unconventional, but really, genius. I especially enjoyed the way Monica and Cowboy would sit outside at appointments with the psychiatrist, even in the pouring rain, simply so Wills could look out the window and see them there. Little things like that are things that reach in and grab me, because I understand it. I’m the weirdo who walks slowly through the Target parking lot in the middle of a torrential downpour, while everyone around me is dashing to or from their cars in an effort to avoid getting any wetter the necessary. I ignore the funny looks from other people as we drip through the store aisles. I do this because Jaymes loves the rain. He giggles and laughs and is just so happy when we’re meandering into the store or back to the car and getting soaked in the process. We, as mothers of special needs children, do what needs to be done. And if that includes sitting with a dog on a stump in the rain, or passionately kissing a filthy stuffed jellyfish in a public place (don’t ask!)… Well, that’s just what we’ll do.

I will admit that the book ended, for me, in tears. Very sad ending, on one hand, but very uplifting on the other. I’ll let you readers see for yourself, rather than spoil it for you. So all in all, this is honestly the best autism book I have ever read. Expect to laugh, expect to cry, expect to learn a lot. Expect to read it twice, three times, maybe more. Expect to be eager to share this with your friends, to blog about it, to send it to someone you love. The story is heartwarming, compelling, and real. Whether you’re the parent of a child on the spectrum or a teacher, or just someone who thought the cover looked cute, this book will be worth the read. I am so grateful I was given the opportunity to share my thoughts.

Monday, August 23, 2010

Summer is over!

Seems like summer flew right by. I suppose the ridiculous amount of insanity that occurred this summer could explain it though. I must have been too busy dealing with one crisis after the next to realize how fast the weeks were going by.

This summer was a crazy mix of hospitals, swimming pools, doctor's appointments, nosebleeds, obsessive record keeping, sidewalk chalk coloring, pony doctoring, therapy changes, medication management, and everything in between. It was just too darn hot most of that time, and the few times things cooled down tended to be the time whomping bad storms that knock down pecan trees into the pasture, enticing obese ponies like mine to munch on the all-he-could-eat tree buffet. The vet, farrier, and I got to know one another pretty well. As did the staff of the pediatric behavioral health unit over at Baptist.

Went to Jaymes school open house and met his new teacher. The good thing is that the teacher already sort of knows Jaymes, and the assistant who took Jaymes out to his regular ed kindergarten classroom is in the same room. When I mentioned the regular ed time that is still written into the IEP, she seemeda little confused, telling me "oh, well we have circle time and centers time here too, so that's kind of unnecessary." Yeah, I assumed you did do those things. Mrs. Colditz had those things too. He's not repeating kindergarten to sit in an AU classroom all year. The point of going out to circle time, centers, and music isn't so he can experience those things. He goes out because he needs to do them in the regular education setting. Something that I guess I need to clarify with the new teacher. She made a comment about being able to take that out of the IEP. I didn't say anything there, I was too surprised to. But really... Over my dead body that section of his IEP gets taken out. I mean.. seriously? Anyway, I asked her to talk to Mrs. Colditz, who knows Jaymes and who was a fantastic teacher. Mrs. Colditz knows me, and knows why and how I operate, and I think that the new teacher would really benefit from having a sit down with her. I would like to avoid the long drawn out, argumentative IEP's of last year, and I know the school does too. If anything, I've grown more of a spine, learned more, and become a whole lot more assertive than in the past. I can and will do whatever it takes to get the best possible educational plan to benefit Jaymes. He will not be in special classes forever. Even his teachers at Lowrance during summer school told me that no way would he eer need to go there- he's smart, happy, and teachable.

Sierra has started pre-school. We really miss her, and she's had some trouble settling in. She cries when I drop her off, and at nap time... So it's really hard on both of us. Other than that, though, she does seem to like it.

The pony is doing well. He is no longer lame, has lost a ton of weight, and is in his grazing muzzle for most of the day and night (other than meals) to avoid any possible accidents like the tree incident. I have put too much money, effort, and love into this pony to risk any more laminitis. He's off grain until I see that he needs some to maintain his weight (so winter, if ever), and his hay is carefully measured out three times a day. He thinks it stinks, but he's well on his way to being a lot healthier and happier. And most of all, sound. No more lameness! No more vet bills, no more bute, no more no more!

I am working on a review of an incredible book I was sent an advance copy of, about a little boy with autism and his wonderful golden retriever... I've taken awhile on this mostly because the book made me cry at the end, and I wanted to wait on reviewing it until I wasn't all choked up! That and I'm a bit lazy lately.

School started for me today, once I figure out what my passwords are to access my online classes. It appears I made a horrible mistake in choosing classes that appeared to be either interesting, or easy "fluff" classes. Apparently Art Appreciation has a real reputation for being horrible, and History of the Holocaust is VERY reading/writing intensive. Sociology will be easy, contentwise, but again, lots of work. Also taking British Lit, but that one shouldn't be too bad ( :

Anyway, review of Cowboy and Wills coming soon, along with more regular posting on the blog.

Saturday, August 7, 2010

I guess all those prayers worked!

I had a giant list of people offering up prayers for Jaymes, and why I have been known to be a bit skeptical where that stuff is concerned, I've got to say things have improved a lot. Jaymes came home last Monday evening. He's a little bit spacey and not quite there, but I think once he acclimates to his medications that will improve. He is so much happier, and more pleasant. Less hyperactive, and can actually focus on tasks. We've had a few little blow ups, but they've been minor, and have not lasted more than a few minutes. No more injuries, throwing stuff..etc. He's been very friendly and cuddly. He asks to go to bed, rather than having to be taken screaming in anger. I have not had any issues in the car, the new car seat seems to keep him in. He has not tried to undo the harness yet.

All in all, he's really doing very well. He is on a lot more medication, which bothers me, but he is so much more content and able to be a kid rather than having to do all his little obsessive stuff. He is able to listen, and to take a time out and actually get something out of it.

We painted the one wall of his room with chalk board paint- this was a VERY good thing. Rather than shredding pillows or punching the walls, Jaymes draws these incredibly cool looking "heiroglyphics" all over the wall. They're a combination of his name, random letters, shapes, and drawings. He does the entire room is this, as far up as he can reach- it's actually pretty impressive when you first walk in. Best of all, it easily wipes off the walls with a dry towel, so he can do it all over the next day.

The lactose free diet seems to be very helpful too. Jaymes has gained 2 pounds in the last week! Rather than 5-7 horrific smelly diapers, he's having one a day. ONE. Really! I am loving that. He looks and feels a whole lot better I think.

In other news, Sierra is potty trained- yay! She's done very well. My mother started her off on it, and we got her trained over the last few days. She will be starting pre-school soon.

Of course not everything is perfect... Went out to ride my pony, Rocket, on Sunday and he was dead lame. He had heat in all four feet and pounding pulses in all four. For the non horse people, this is laminitis- it's when a horse has somehow managed to accumulate too much sugar (through new green grass, too much grain, etc). The tissue in the hooves actually breaks down, and can lead to founder, which is when the bone in the hoof (coffin bone) actually rotates due to the tissues breaking down and in worst cases, can punch through the bottom of the hoof. Laminitis is the start of the bad stuff, so catching it early is important. Rocket has been on and off lame all week, which is concerning. I had the vet out Monday, and he gave me pain meds. But, he's still not quite right. He has not had any more heat, but he is still very lame. The next step needs to be xrays, which thrills me of course. Then we can decide where to go from there. He's on a serious diet, only a little bit of hay twice a day. No more treats, no more grain. No grass at all. So we'll be workign with vet and farrier to figure out how to keep him comfy and avoid serious damage.