I have taken some time away from this blog, due to a comment by on my last entry. I wanted to reply to the comment, but feel that I need an entire blog to do it.
First of all, despite the comment's negative air, I feel it is a good thing that we have this open forum in which to share our thoughts and feelings about the disorder. There will always be differing opinions on how to raise any child, and children with special needs are no exception. There is no wrong or right way, just what is right for each individual family.
Let me first say that I am not against people trying to raise awareness of Autism and how Autistic people of all ages should be treated. I am all for research. But I think there is a huge disconnect between displaying a ribbon, and being able to educate people. I wore an Autism pin on my work uniform and lapel for a year, felt like I was doing my part to raise awareness, was certain several people each day would ask about it, giving me an opportunity to educate them. In all honesty, the only people who mentioned it were people who already knew what the pin symbolized. And I can relate. I see bumper stickers all the time supporting "this" and "that" cause, and I do not have any desire to rush home and jump on the internet to see what it is all about. It just isn't in my nature or my tight schedule. In my (albeit limited) experience, I think that those who are interested or know someone on the spectrum, will seek out information, of which there is a wealth, and will take from it what they will. I do not see Autism as a disease or a horrible tragedy, I think my kids are brilliant and loving, and, like any parent, think they are beautiful exactly the way they are.
I used to speak for them all the time. When someone would try to engage them in conversation, I would promptly step in and announce, "Oh, they're Autistic, they probably won't answer you." I thought I was being helpful or letting them off the hook so people would understand why they weren't answering. But now I see that I wasn't doing that to make them more comfortable, I was doing that because I felt uncomfortable that they weren't answering. When I read the aforementioned book, it opened my eyes to what I was doing to them. We wouldn't advertise other conditions in the same manner would we? If it were diabetes instead, would I introduce them as my sons with diabetes? Doubtful. My kids, being older, are aware that they are not like others, that they sometimes don't have the words to express what they don't like, that they get kicked out of daycare after daycare because they don't behave like everyone else. They don't need a neon sign, or their mother advertising what they least like about themselves. It comes down to respect. Everyone has something about themself they don't want others to know, for my kids they have both been able to verbalize that they don't want me to tell people they are Autistic. It isn't fair to air out someone else's laundry, and especially kids, who already feel they have so little say in their life, it can be exceptionally scarring.
If slapping a bumper sticker on my car truly gave me the opportunity to educate people, I could see the merit in it, but for me, it comes at the expense of my kids' feelings, and at this point, would violate their trust. And I truly do feel as though it opens it up for judgement, not in a malicious way, but in a knee-jerk manner, the same way someone reacts to seeing someone wearing a turban, or seeing a car with a gay rights bumper sticker. It's not something most people will admit to, or are proud of, but there is a little bit of judgement in all of us.
As far as the parents of Autistic children being impossible to please, that may be so. All parents strive to have the best for their kids, whether it is healthier lunch options, no bullying on the playground, better books to choose from, or in-class aides that will help all children reach their potential. I agree, there is a fine, often contradicting line between recieving these (often vital) services, and having those services single them out as being different, and it is something each parent needs to decide what is right for their child. I have a friend whose son is on the spectrum, and has chosen not to have any special treatment in the school system; rather chosing to integrate him in with neurotypical children. She has her challenges, but that seems to be what works best for her. I am very fortunate that my kids receive services at school that have allowed them to keep up with the rest of their class. Honestly, what I want for my kids is to be happy. They are very aware when they can't do something like the others can; our job as parents is to give them the coping skills to handle tough situations and think of another solution so that, though they will always be different, they can handle it. I am very satisfied with the services they get at school, it is after school where I am appaled at the lack of daycare facilities/providers that offer care for children with special needs. That being said, I feel my energy would be better spent learning all I can about Autism so that I may go into these facilities and train the staff how to handle kids on the spectrum, and that is a decision I have made; that is my contribution to the cause. With one in every 58 boys born on the spectrum, these consultative/training services are more vital every day. And if it helps just one family to navigate their course a little easier, then I will have made a worthwhile contribution. It may take me years to reach the point of being able to live out that dream, but to me it feels very necessary.
It may be decades before researchers find what causes Autism, and decades more to figure out how to "treat" or avoid it, but I don't see it as a negative thing. My kids have a lot to offer the world, as does everyone on the spectrum, and I wouldn't change them for the world. I believe our creator does not make mistakes.
There will always be challenges in raising children, there will always be differences of opinion, and ideas and information will shift and change as we learn. The best we can do is treat people with respect, even if we have differing opinions. I don't feel that my opinion is always right, as it is often based on emotion and a little bit of logic, I am just as any parent, trying to give my kids the best I have to offer. Respect, dignity and trust should be part of the package between parents and their children. For me, that means not wearing a ribbon. It's not an attack, it's just personal. If we never give our kids any say, especially on something that effects them on such an emotional level, they will never be empowered or able to advocate for themselves.
As I have always believed, we try, until we find the way that is right.
Friday, September 23, 2011
Monday, April 18, 2011
Why I Don't Display the Autism Ribbon
I am on Facebook, as is nearly everyone, and I use it to keep up with the lives of my friends. Lately there have been a lot of Autism things coming forth, and I have been invited to click "this" for autism, or proudly display "that" for autism, but I have not chosen to do so. It is, in part, due to a book I've recently read called "Empowered Autism Parenting: Celebrating and Defending your Child's Place in the World" by William Stillman, a brilliant author, autism advocate, and person with Asperger's. I cannot recommend this book enough to everyone, whether or not they live with someone with autism.
Stillman tells us that when we proudly display the puzzle piece ribbon on our bumper, or advertise it elsewhere, that is setting the environment for people to segregate us and our children. People see that ribbon on our bumper and think, "Oh, they're one of those families" or, Oh, poor things, what saints they are to care for those diseased children. And when your children emerge from the vehicle, the judgements are already being passed upon them. In that manner, you aren't giving your child the chance to be considered "normal", you are already telling others what to think of them, and how to treat them. And the scarey thing is, even with the rate babies are being born with autism, there are still so many people who don't understand what autism is. When I tell someone that my child is autistic, I think they expect to catch him drooling in a corner, rocking himself and talking gibberish.
The book also talks about those parents who print/hand out cards or announce that their child is autistic when they are reacting to the stimuli in crowded stores. The person you hand that card to, as your child is tantruming or self-soothing in a way that may not be considered "normal" social behavior, is now thinking, this is what autism looks like. It belittles your child, who is merely trying to communicate his/her level of discomfort with the sensory overstimulation.
It also taught me that my child's "behaviors" should not be dismissed as that, but as communication. Most autistic children have needs that they can't put into words, so they use action to try and communicate. This really hit home with me. My older son is high functioning, and is quite bright. In first grade, he was testing at two grade levels ahead in reading and math, and eight grade levels ahead in visual spatial relationships (common for kids on the spectrum). He is very bright, and has always been very verbal, so I have always assumed that he knew how to express his needs/wants/discomforts, but now I see things so much clearer. He has an appointment to assess him for ADHD next month, but now I am wondering if his "disruptive behaviors" aren't really just his attempt to communicate something that his brain/mouth won't let out. It will be interesting to see what the outcome is. Since reading the book, our relationship has been much improved, and I have appologized for doing things wrong in the past, and asked him to write down anything I've done that bothered/bothers him so that I can work to help him instead of bother him.
As for my younger son, I have begun to show him more respect by asking him if it's OK to touch him before I do it, and to my surprise, even though he usually never complains about my touch, a lot of times he says no when I ask him if it's OK to rub his back or arm, which I have been doing without permission nearly every time he is near enough to touch. There are places he likes to be touched/kissed and I am working on just touching him there, but only with permission. It is about respecting them, and as Stillman puts it, assuming intelligence. Our children want what everyone else wants, to be treated with respect and dignity. And that is why I do not proudly display the autism ribbon.
Stillman tells us that when we proudly display the puzzle piece ribbon on our bumper, or advertise it elsewhere, that is setting the environment for people to segregate us and our children. People see that ribbon on our bumper and think, "Oh, they're one of those families" or, Oh, poor things, what saints they are to care for those diseased children. And when your children emerge from the vehicle, the judgements are already being passed upon them. In that manner, you aren't giving your child the chance to be considered "normal", you are already telling others what to think of them, and how to treat them. And the scarey thing is, even with the rate babies are being born with autism, there are still so many people who don't understand what autism is. When I tell someone that my child is autistic, I think they expect to catch him drooling in a corner, rocking himself and talking gibberish.
The book also talks about those parents who print/hand out cards or announce that their child is autistic when they are reacting to the stimuli in crowded stores. The person you hand that card to, as your child is tantruming or self-soothing in a way that may not be considered "normal" social behavior, is now thinking, this is what autism looks like. It belittles your child, who is merely trying to communicate his/her level of discomfort with the sensory overstimulation.
It also taught me that my child's "behaviors" should not be dismissed as that, but as communication. Most autistic children have needs that they can't put into words, so they use action to try and communicate. This really hit home with me. My older son is high functioning, and is quite bright. In first grade, he was testing at two grade levels ahead in reading and math, and eight grade levels ahead in visual spatial relationships (common for kids on the spectrum). He is very bright, and has always been very verbal, so I have always assumed that he knew how to express his needs/wants/discomforts, but now I see things so much clearer. He has an appointment to assess him for ADHD next month, but now I am wondering if his "disruptive behaviors" aren't really just his attempt to communicate something that his brain/mouth won't let out. It will be interesting to see what the outcome is. Since reading the book, our relationship has been much improved, and I have appologized for doing things wrong in the past, and asked him to write down anything I've done that bothered/bothers him so that I can work to help him instead of bother him.
As for my younger son, I have begun to show him more respect by asking him if it's OK to touch him before I do it, and to my surprise, even though he usually never complains about my touch, a lot of times he says no when I ask him if it's OK to rub his back or arm, which I have been doing without permission nearly every time he is near enough to touch. There are places he likes to be touched/kissed and I am working on just touching him there, but only with permission. It is about respecting them, and as Stillman puts it, assuming intelligence. Our children want what everyone else wants, to be treated with respect and dignity. And that is why I do not proudly display the autism ribbon.
Friday, March 18, 2011
Too Many Doctors!
This has been a week full of doctors, again. Most of our visits were for Zach's dental procedure yesterday. Wednesday he had a full physical exam, to be sure he would be OK with anesthesia, then directly to the dental office for a complete set of X-rays since the hospital's equipment was down. That same evening Israel had an ear infection so we ended up in the ER, then yesterday was Zach's procedure, which had he and I in the hospital for half the day. It was a stressful morning, he was so hungry and kept reminding me how bad his stomach hurt. He was scared but brave, and in the end, he did OK. They extracted his 3 top, front teeth, due to excessive wear, then he got 4 crowns and some fillings. He has really weak teeth. While he was under, they also drew some blood, and he will have a whole battery of testing done for a medical diagnosis of Autism, and to check lead levels (can also weaken the teeth, so that makes sense) and thyroid testing. The testing was done by my request, because his special ed teacher recommended it due to his unpredictable aggression. Of course, when he was in the doctor's office for his physical, he was acting so good and easy going, so she was questioning why he was diagnosed with Autism. I am not sure how to feel about that. There are definite characteristics that are autistic, the speech delay, the clumbsiness, the jargoning (which is non-existent these days), the shakey hands and poor fine motor skills, the sensory issues...but part of me wonders with both of my kids, if they are misdiagnosed. For instance, with Zach, most of the symptoms he is exibiting could be for autism or lead poisoning. For Israel, most of his issues could be autism or ADHD. They were both diagnosed as autistic, but only educationally, not medically. Part of me wanted to argue with the doctor when she questioned why Zach was tested for autism, but part of me wondered about the other things. I have read that most autistic children have secondary diagnoses, so maybe it is just that. They both have autistic characteristics, but there are other issues as well. At any rate, we should soon find out about Zach's lead levels, something I have been curious about for a while, and Israel will have his first appointment to get the ball rolling on testing for ADHD on Monday. So hopefully, before I get back to work, we will have a clearer picture of what is going on with both of them. I really need to know with Israel, he has gotten so bad lately that he is continually bringing out the worst in me, and I feel like such an ugly person. It has made me aware of how desperately I need better ways of dealing with my stress/anger when dealing with him. Not that I think I can just make all our problems go away by medicating my children, but it will certainly help us as a family, if everyone has the metabolic balance they need in order to be happy. When Israel acts out, I can tell he is wishing he could control it, and I can also tell that he absolutely cannot do so. What a torment that must be for him. I am sorry it has taken so long for us to get him the help he needs. The truth is, it is only because I have lost my job (thus, qualifying us for medical assistance as a secondary insurance) that I have been able to afford all these doctor appointments.
Zach is really upset about his teeth, about the ones that are gone, and even about the ones with the crowns, but it was necessary, and I know he will get over it in time. He opted to go to school today, and other than directly after coming off the anesthesia, only complained of pain once last night. He is such a tough, resilient kid, and I never cease to be amazed by him! Israel has some way to go, but as a family, we will all get through it together. I wouldn't have it any other way.
Zach is really upset about his teeth, about the ones that are gone, and even about the ones with the crowns, but it was necessary, and I know he will get over it in time. He opted to go to school today, and other than directly after coming off the anesthesia, only complained of pain once last night. He is such a tough, resilient kid, and I never cease to be amazed by him! Israel has some way to go, but as a family, we will all get through it together. I wouldn't have it any other way.
Monday, March 14, 2011
Bugs and Spring
Well, another school week begins. Last week was shortened by a scheduled teacher's day off, and by stomach flu (Israel), and this week will be short for Zach, as he will be having his dental work done under anesthesia on Thursday, and will have to get out of school early for a physical on Wed. He may have to miss school on Friday as well, depending on how much pain he has. Thank goodness next week is spring break, so we won't have to worry about missing any school. Each year I think they are going to get yelled at or told they have to repeat a grade for missing so much school, but little can be done sometimes. The dental office I bring Zach to, only does work at the hospital once a month, so we had to take what they offered.
Last Wednesday, I awoke with stomach flu, and the boys showed such compassion and selflessness I was beside myself. Israel bagged up their school snacks for me, they both got dressed by themselves, and both insisted I stay inside and they would make it to their bus stops on their own. Of course, I couldn't allow that, especially since a mix of freezing rain and snow was blanketing the streets and cars were slipping all over. I made it through bus stop duty somehow, and rested the whole day. Every time I thought of how sweet the boys were, it made me so gratful that they are mine. There have been many times when I have wondered if they are even aware of others, and here they were putting my needs in front of theirs. Very impressive.
Poor Israel came home from school that day with a stomach ache, and sure enough, caught my bug. He handled it like a champ, and recovered really quickly, but now has a horrible head cold. I can't wait for spring to "stick" so we can all get back to our healthy selves.
As the year progresses, the boys' teachers are growing less and less patient with them, and I am all too aware that they need to be diagnosed and posibly medicated. I have been reluctant to do this, but it may be the best for them, in order for them to be able to get through school without a nearly daily incident. I think of it as just part of the drill, but their teachers, who handle special need kids, are seeing it as abnormal and disruptive, even for special need kids. And in the long run, it is drawing attention to them, which can be hurting their self-esteem. So, I will finally assert myself to researching how I go about getting them assessed/treated during the course of this week. With Spring break next week, I should be able to get them appointments so they don't have to miss any more school.
All the busy work that needs to be done is less stressful because of the beautiful weather that is forcasted for us this week. It will mean a thaw and melt, which equals lots of muddy clothes/boots! But at least, we won't have to rely on those darn snowpants much longer, they are starting to suffer the fate of all my boys pants, torn knees. Do boys ever grow out of this?
Last Wednesday, I awoke with stomach flu, and the boys showed such compassion and selflessness I was beside myself. Israel bagged up their school snacks for me, they both got dressed by themselves, and both insisted I stay inside and they would make it to their bus stops on their own. Of course, I couldn't allow that, especially since a mix of freezing rain and snow was blanketing the streets and cars were slipping all over. I made it through bus stop duty somehow, and rested the whole day. Every time I thought of how sweet the boys were, it made me so gratful that they are mine. There have been many times when I have wondered if they are even aware of others, and here they were putting my needs in front of theirs. Very impressive.
Poor Israel came home from school that day with a stomach ache, and sure enough, caught my bug. He handled it like a champ, and recovered really quickly, but now has a horrible head cold. I can't wait for spring to "stick" so we can all get back to our healthy selves.
As the year progresses, the boys' teachers are growing less and less patient with them, and I am all too aware that they need to be diagnosed and posibly medicated. I have been reluctant to do this, but it may be the best for them, in order for them to be able to get through school without a nearly daily incident. I think of it as just part of the drill, but their teachers, who handle special need kids, are seeing it as abnormal and disruptive, even for special need kids. And in the long run, it is drawing attention to them, which can be hurting their self-esteem. So, I will finally assert myself to researching how I go about getting them assessed/treated during the course of this week. With Spring break next week, I should be able to get them appointments so they don't have to miss any more school.
All the busy work that needs to be done is less stressful because of the beautiful weather that is forcasted for us this week. It will mean a thaw and melt, which equals lots of muddy clothes/boots! But at least, we won't have to rely on those darn snowpants much longer, they are starting to suffer the fate of all my boys pants, torn knees. Do boys ever grow out of this?
Wednesday, March 2, 2011
Looking Forward
Things have been flowing along fairly smoothly lately, and I haven't been bloggin much due to a rearranging of our nightly schedule. Now that both of the boys are computer literate, the time I actually get to use the computer is very limited. It's good though, just like Israel, Zach is using phonics to spell out the sites he wants to visit, and he gets pretty close sometimes. It always impresses me.
Israel's teacher told me how remarkable of a writer is, which was a relief to hear, as he had a lot of trouble with writing last year (1st grade). When working on descriptive writing he would write things like, " I like dogs alot and alot and alot and alot. I am a dog man." That's an actual assignment he brought home. While it made me laugh, I worried that he was not catching on to the whole concept of describing things. So, to hear his current teacher say that he is a great writer, I am just happy as a clam!
Zach has been going through a phase where he doesn't want to take the bus home from school. At the beginning of the year, I always picked him up, but now I let the bus bring him home, since the winter brought many slippery roads. He will get over it. I have told him that next year he will be going to the same school as Israel, and while he says he wants to stay at his current school, I know he will love Israel's school, and enjoy seeing Israel during the day, and riding the bus to and from school with him. They are really pretty close, even though they fight. I guess that's true of most siblings.
Even though the boys like the snow, I am looking forward to the warmer weather, to not having to pile on all the snow clothes, and walk so cautiously on the ice. The boys have been talking a lot about swimming lately, and want to do it "a lot" this summer. I guess it might be time to get them some swimming lessons. If we have to be in this state another year, at least there are plenty of fun things to do in the summer time. I'm looking forward to long, warm days with my smiling boys.
Israel's teacher told me how remarkable of a writer is, which was a relief to hear, as he had a lot of trouble with writing last year (1st grade). When working on descriptive writing he would write things like, " I like dogs alot and alot and alot and alot. I am a dog man." That's an actual assignment he brought home. While it made me laugh, I worried that he was not catching on to the whole concept of describing things. So, to hear his current teacher say that he is a great writer, I am just happy as a clam!
Zach has been going through a phase where he doesn't want to take the bus home from school. At the beginning of the year, I always picked him up, but now I let the bus bring him home, since the winter brought many slippery roads. He will get over it. I have told him that next year he will be going to the same school as Israel, and while he says he wants to stay at his current school, I know he will love Israel's school, and enjoy seeing Israel during the day, and riding the bus to and from school with him. They are really pretty close, even though they fight. I guess that's true of most siblings.
Even though the boys like the snow, I am looking forward to the warmer weather, to not having to pile on all the snow clothes, and walk so cautiously on the ice. The boys have been talking a lot about swimming lately, and want to do it "a lot" this summer. I guess it might be time to get them some swimming lessons. If we have to be in this state another year, at least there are plenty of fun things to do in the summer time. I'm looking forward to long, warm days with my smiling boys.
Friday, February 18, 2011
Regressions and Birthdays
It has been business as usual this week, just going about our normal routine. Zach has had a few bad days at school, where he doesn't want to get dressed to go home, and has been wanting me to pick him up. It is a little troubling, I could agree to pick him up from time to time, but I don't want him to get used to that, because once I get a job, I won't be able to. It will be better next year, when he goes to the same school as Israel. They are really close, and I can tell they take comfort in each other's company. When they're not fighting, that is.
Israel has been having fairly good days lately, the most they complain about is him making excessive noise. That is just his personality. I understand (as do they) that he makes noise to drown out other noises, and a lot of times, he hums or sings without even realizing he's doing it. I guess I can't feel too bad about him making noises, even though it's distractive. Before he was diagnosed, he was hitting, kicking and pushing kids, and we've also been through periods of spitting (with both my kids), so while I don't condone the distractions he creates, making noises is not the worst thing he could be doing. At least I am not getting calls to come pick him up all the time.
Zach has been having accidents at night. It has been nearly a year since he'd peed the bed, but in the past few weeks, there have been several incidents. I think it may have something to do with his sprained foot, which he is still refusing to walk normally on. He is still on tiptoes, and it is starting to concern me, I may have to bring him to a different doctor to have it looked at again. Did I mention how sick of doctors offices I am? But I can't have him potentially shortening his calf muscles and tendons by walking on his tiptoes indefinitely. So, I will try to get him an appointment next week. Blah.
I can't believe there are only 4 months left of the school year. There are pros and cons to having a 9 month school year. I love the idea of summers off, so we can plan to do all kinds of things while the weather is nice. It does get expensive to have full-time daycare for those 2 1/2 months though. Ah well, we will take it as it comes.
Last weekend the boys were busy playing in their bedroom, and all of the sudden I heard a chorus of meowing and barking. I already had a smile on my face when I got to their doorway, and Israel explained that all of their stuffed animal friends birthdays had already passed, and we missed them, so they were throwing a party for them. Cats, dogs, bears, Spongebob, and a zebra. It was pretty adorable. I am so glad my boys have the capacity to pretend. It is truly precious, and so are they!
Israel has been having fairly good days lately, the most they complain about is him making excessive noise. That is just his personality. I understand (as do they) that he makes noise to drown out other noises, and a lot of times, he hums or sings without even realizing he's doing it. I guess I can't feel too bad about him making noises, even though it's distractive. Before he was diagnosed, he was hitting, kicking and pushing kids, and we've also been through periods of spitting (with both my kids), so while I don't condone the distractions he creates, making noises is not the worst thing he could be doing. At least I am not getting calls to come pick him up all the time.
Zach has been having accidents at night. It has been nearly a year since he'd peed the bed, but in the past few weeks, there have been several incidents. I think it may have something to do with his sprained foot, which he is still refusing to walk normally on. He is still on tiptoes, and it is starting to concern me, I may have to bring him to a different doctor to have it looked at again. Did I mention how sick of doctors offices I am? But I can't have him potentially shortening his calf muscles and tendons by walking on his tiptoes indefinitely. So, I will try to get him an appointment next week. Blah.
I can't believe there are only 4 months left of the school year. There are pros and cons to having a 9 month school year. I love the idea of summers off, so we can plan to do all kinds of things while the weather is nice. It does get expensive to have full-time daycare for those 2 1/2 months though. Ah well, we will take it as it comes.
Last weekend the boys were busy playing in their bedroom, and all of the sudden I heard a chorus of meowing and barking. I already had a smile on my face when I got to their doorway, and Israel explained that all of their stuffed animal friends birthdays had already passed, and we missed them, so they were throwing a party for them. Cats, dogs, bears, Spongebob, and a zebra. It was pretty adorable. I am so glad my boys have the capacity to pretend. It is truly precious, and so are they!
Friday, February 11, 2011
Spaghetti Beards
Thursday, February 10, 2011
Recovering Nicely
Well, Israel is now 2 days post-arm cast, and he is beginning to use his arm amazingly well. Despite seeing the x-ray of a well-healed bone, I am still a nervous wreck when I see him running or fighting with his brother. He is quite prone to tripping, which is how the arm got broken in the first place. Being forced to write with his left hand for 7 weeks, he is now ambidextrous and I found it quite amusing to see him sitting down to do homework, a pen in both hands, working away like a madman. The coolest thing is, his penmenship as the same with either hand, which I find pretty impressive. He was really worried about his arm when they took the cast off, and shed a good number of quiet tears in the doctors office, not wanting to move his arm or bend his fingers. I had to set a time limit on him as to how long he was allowed to leave his jacket and mitten on after we got home, and had to coax him into a much-needed bath to revive his dry, flakey skin. After the bath, he discovered he could bend his fingers much easier, and he hasn't looked back since. I am happy he's doing so well with it. I really didn't know what to expect since he is my guy who really doesn't handle transitions well.
Zach is still walking on tiptoes due to spraining his foot a week and a half ago. Though its not broken, he is still favoring it which makes me wonder if its time to get a second opinion. I do catch him running on his tiptoes sometimes, and jumping gingerly on it, which leads me to believe this one may not be something to worry about. Which is a relief, since our family has had 3 visits to the emergency room since December.
Zach has a dental appointment scheduled for mid-March, which he will have done at the hospital under anesthesia. I am nervous about the whole thing, particularily the cost of it, if I get a job and lose our Medical Assistance. But, as always, we will play it by ear and do what we can.
I had a promising job interview last week, and will be going to that office to shadow for a few hours today. While I am very excited at the prospect of having 2 incomes again, I am worried about how Zach will handle it when I go back to work. I don't think Israel will be affected too much, because my husband will be here for them after school, and Israel and Garrett have a special bond, just like Zach and I do. Zach is a little too attached to me, but the last few months have shown great improvement in his allowing Garrett to entertain him or get him what he needs. Time will tell. I was not unemployed by choice, and we definitely cannot afford to live on one income very much longer. I can only hope that our extra time together was as rewarding to them as it was to me.
Zach is still walking on tiptoes due to spraining his foot a week and a half ago. Though its not broken, he is still favoring it which makes me wonder if its time to get a second opinion. I do catch him running on his tiptoes sometimes, and jumping gingerly on it, which leads me to believe this one may not be something to worry about. Which is a relief, since our family has had 3 visits to the emergency room since December.
Zach has a dental appointment scheduled for mid-March, which he will have done at the hospital under anesthesia. I am nervous about the whole thing, particularily the cost of it, if I get a job and lose our Medical Assistance. But, as always, we will play it by ear and do what we can.
I had a promising job interview last week, and will be going to that office to shadow for a few hours today. While I am very excited at the prospect of having 2 incomes again, I am worried about how Zach will handle it when I go back to work. I don't think Israel will be affected too much, because my husband will be here for them after school, and Israel and Garrett have a special bond, just like Zach and I do. Zach is a little too attached to me, but the last few months have shown great improvement in his allowing Garrett to entertain him or get him what he needs. Time will tell. I was not unemployed by choice, and we definitely cannot afford to live on one income very much longer. I can only hope that our extra time together was as rewarding to them as it was to me.
Tuesday, January 25, 2011
Adaptations
Today as I was getting my boys ready for school and dreaming of springtime, when we don't have to put on all that snow gear, I was struck by the realization that they don't hate the snow. They actually love playing in it, despite their sensory issues. They have rarely complained about the snow, cold and ice even though they had never been exposed to it before last year. And, I am really impressed by how adaptable and tollerant they are. I can't say the same about my husband and I, who have come to hate the snow, despite having grown up with it. It's amazing how five years in the desert can change your whole perception of winter. I used to love the snow when I was a kid, too. It makes me wonder if I should be so impressed with my kids adaptation to the snow. But its more than that, they've adapted so many times, to so many new experiences. Israel has moved 3 times in his life, one of those was cross-country and included starting a new school. He's been at his current school a little less than two years now, and has had to cope with multiple staffing changes, including his second grade teacher moving away a month into his school year, and several of his specialty helpers changing. And don't even get me started with the babysitters/daycare changes they've been through! His teachers tell me that he doesn't handle transitions well, especially at the beginning of the school year, but I think, with all my kids have been expected to handle, they have adapted brilliantly, Autistic or not.
Israel has good weeks and bad weeks at school. I had his IEP meeting last week, and we agreed that his main problem area is in coping skills. If something happens (for example, if someone is cheating or lying) he blows his top. There has been a lot of F-bombs dropped this year, and it usually happens when someone is cheating while playing with him. We are working on coping skills at home and at school. At least his outbursts have gradually progressed from physical to verbal, that is a huge improvement! Let me say that he is at a really great school. I have said it before how gratful I am to the teacher who cared enough to look deeper to find out why he was behaving badly at school instead of just writing him off as a bad kid. I can't say enough about her, she really gave him everything she had in her. Now that he's moved onto second grade, I still see that teacher from time to time, and she always takes the time to say hello and ask about Israel. She even told me that he was one of her very favorite students, and that she would always remember him. The entire school staff has been amazing. They really accomodate him in ways that are kind of rare in public education. His current teacher, for instance, allows him to doodle while he is working on his math work or listening, because she realized that he was paying attention and catching everything that is being said, and that it might actually heighten his ability to stay focused. The occupational therapist has incoorperated so many creative tools for him to help him relieve the stress he feels daily, and even the speech teacher is helping him learn how to socialize effectively, and helping with those coping skills. This is an awesome team, and I am happy that Zach will be going to the same school next year.
Zach's school is good too, I just see them trying to force him into their plan instead of individualizing his learning environment. His special ed teacher even mentioned that we might want to have Zach medically diagnosed with Autism so that we might medicate him. I'm not sure I'm comfortable with that. If he has needs, I would rather uncover what those needs are, and work through them, which will build coping skills he can use throughout his life, instead of medicating him so that he wont be disruptive. As a parent, when you first hear the diagnosis, you take a deep breath and buckle up for the bumpy journey ahead, and deal with it the best you can. There is a lot of learning we will do along the way.
I wonder if any parents out there want to chime in on Autism medications. I'd love to get some input!
Israel has good weeks and bad weeks at school. I had his IEP meeting last week, and we agreed that his main problem area is in coping skills. If something happens (for example, if someone is cheating or lying) he blows his top. There has been a lot of F-bombs dropped this year, and it usually happens when someone is cheating while playing with him. We are working on coping skills at home and at school. At least his outbursts have gradually progressed from physical to verbal, that is a huge improvement! Let me say that he is at a really great school. I have said it before how gratful I am to the teacher who cared enough to look deeper to find out why he was behaving badly at school instead of just writing him off as a bad kid. I can't say enough about her, she really gave him everything she had in her. Now that he's moved onto second grade, I still see that teacher from time to time, and she always takes the time to say hello and ask about Israel. She even told me that he was one of her very favorite students, and that she would always remember him. The entire school staff has been amazing. They really accomodate him in ways that are kind of rare in public education. His current teacher, for instance, allows him to doodle while he is working on his math work or listening, because she realized that he was paying attention and catching everything that is being said, and that it might actually heighten his ability to stay focused. The occupational therapist has incoorperated so many creative tools for him to help him relieve the stress he feels daily, and even the speech teacher is helping him learn how to socialize effectively, and helping with those coping skills. This is an awesome team, and I am happy that Zach will be going to the same school next year.
Zach's school is good too, I just see them trying to force him into their plan instead of individualizing his learning environment. His special ed teacher even mentioned that we might want to have Zach medically diagnosed with Autism so that we might medicate him. I'm not sure I'm comfortable with that. If he has needs, I would rather uncover what those needs are, and work through them, which will build coping skills he can use throughout his life, instead of medicating him so that he wont be disruptive. As a parent, when you first hear the diagnosis, you take a deep breath and buckle up for the bumpy journey ahead, and deal with it the best you can. There is a lot of learning we will do along the way.
I wonder if any parents out there want to chime in on Autism medications. I'd love to get some input!
Tuesday, January 18, 2011
Doctors, UGH!
Let me just say that, no matter how much we do as parents, there will always be a guilty feeling that we have not done enough. I was born into a family of very strong female role models, with a strong threshold for pain. That being said, I am not in the habit of running to the doctor for every little sniffle, and I don't do so for my kids either. That does not make me a very popular person with the doctors we've visited. They look at me as if I am speaking in tongues when I tell them that my kids don't have a "regular doctor". When something happens, we bring them to a clinic or more often, the emergency room. Don't get me wrong, I hate to see my kids uncomfortable, and ask if they're OK a million times a day, including when they cough more than once or twice in a row. But have you noticed how many things take care of themselves with either home remedies or simply waiting it out? Even Pink Eye, the dreaded beast that everyone rushes straight to the doctor for because it looks horrible and it's (gasp!) contageous. Yep, even the dreaded Pink Eye resolves itself in most cases. Which leads me to wonder why we as a nation, rush our kids (and selves, for that matter) to the doctor's office so much. I have spent too much time in doctors' offices lately, and I am exhausted from it all.
Last night was the magical night when Israel got his cast off. That puppy went clear from the start of his fingers to his armpit, his elbow stuck at a 90 degree bend. It had been on for 4 weeks, and we were all excited for him to get it off. But the bones weren't completely healed, so he got a shorter cast on which he will wear for 3 more weeks. That, I am hoping, will be the end of his appointments, at least for the arm. The appointment itself was stressful, Israel was so scared when they were cutting the cast off, that he looked like he was going to pass out. And there were a whole slew of emotions coming from him, and some tears. But more than all of that, the waiting and waiting and waiting for the appointment. Do doctors offices ever run on time? We were there nearly two hours again, and the roads were horribly slippery when we were through, making the drive home stressful, then we had to get straight to work on homework so there would be enough time for bedtime procedures. Maybe I'm just a baby about it all, but doctors appointments stress me out.
A couple nights ago, Zach twisted his foot while walking. I say this without surprise, as he could trip over his own shadow. I wasn't sure if he was just trying to get attention because we'd been talking about Israel's arm/cast a lot recently in the anticipation of him getting it removed. But, I put an ace bandage on it, just in case, figuring the pampering wouldn't hurt him. By the end of that evening he was feeling much better and even running on said foot. Last night, though, he reinjured it, and refused to walk on it. I wasn't sure how bad it was, I couldn't see any swelling, so we just bandaged it and gave him a little pain medicine at bedtime. He had his first dental appointment scheduled today (first ever repair appointment, that is) and he was a little aprehensive about it. Zach has always creeped into my room to sleep with me during the night. Last night around 1AM he knocked on my door and I could hear him crying. He was still refusing to walk on his foot so I got him tucked into bed with me and that is where worry began to set in. Was I going to have to bring him to the doctor instead of his dentist, we'd been waiting so long to have the double coverage on insurance to be able to fix all the things wrong with his teeth. Then there was the question of schools being delayed because of the roads, and what if he needed crutches, I don't think he's coordinated enough to be able to use them...
But I made him try to walk this morning, and he could. Schools weren't delayed so I didn't have to worry how I was going to get them both to school and still keep Zach's appointment. So, once Israel was on his bus, Zach and I braved the icy roads to get him to the dentists. I had a lot of anxiety because I could tell Zach wasn't in the mood to try new things. The waiting room has video games, that helped. Then he went to sit in the chair, the dentist was, of course, running behind. But this time, it was to our advantage because the dental assistant was very calming, and got Zach to talk and talk like he hardly ever does. Then the dentist came in and she was minimally friendly. I had wondered if she read his chart and noticed that he is on the spectrum, maybe she didn't see that. She looked in his mouth with a mirror and quickly sat him back up, exclaiming that there was a significant change in the amount of damage from his last visit in late July, and what was the reason we hadn't started work on him. I told them I lost my job, but that we now had medical assistance. She took x-rays and revised his treatment plan, which was supposed to be 4 short visits. Now, she was recommending the work be done at a hospital, under anesthesia. She proceeded to fill some small cavities, just to see how he'd handle it. He choked and squirmed and she started to lose patience with his movement and not wanting to keep biting on the rubber thing she'd shoved in his mouth. I understand that she has a job to do, but when you specialize in PEDIATRIC dentistry, you ought to be a patient and gentle person. I was sent to a side office to schedule his procedure and it only irritated me further when I was told that this particular doctor only does one per month, and she was backed up until May. It is doubtful we will still have medical assistance by then, who knows, but if not, we certainly won't be able to afford the whole thing. Now, I know his teeth are bad. I know we should have had them taken care of a long time ago. The money is a very real reason why we haven't been able to, but even more than that is the way Zach and my husband and I feel right now. Zach now HATES the dentist, he practially RAN out of the office and begged to go to school. Not a huge fan of school, but just to be anywhere but the dentist. I feel sad for him, like they stepped all over his feelings or maybe more appropriately, didn't consider his feelings at all. Maybe that dentist did look at his chart and did see he's on the spectrum, and maybe she just assumed that he didn't have a brain or feelings because of it. Whatever the case, I have decided that I either want a different doctor to do the work, or I will go elsewhere. I know it isn't comfortable for anyone to go to the dentist, but imagine being tortured by noises besides, and being scolded for squirming when something makes you uncomfortable. He could have behaved much worse than he did, I was actually very proud of him.
After all of that, I am so sick of doctors offices. Don't get me wrong, Israel's team of professionals are absolutely the bees knees. His orthopedic surgeon even works with the Packers and is a top-notch doctor. I am just spent. And there are still so many issues we've yet to tackle while we have this extra insurance. Israel's cast again, Israel's possible diagnosis of ADHD, Zach's teeth, Zach's test of lead levels, Zach's hearing. They want us to get them updated on their shots and I am just not sure I want to take that leap yet. I know there has been so much controversy over vaccinations and Autism, but I am just not convinced that there isn't a connection since it was almost immediate the change in Zach after his 2 year vaccinations. As a parent whose heart wrenches every time I see a set back or challenge that neurotypical kids don't have to face, it is just too big a risk for me to take. And that is how I feel, no matter what doctor looks down their nose at me.
Last night was the magical night when Israel got his cast off. That puppy went clear from the start of his fingers to his armpit, his elbow stuck at a 90 degree bend. It had been on for 4 weeks, and we were all excited for him to get it off. But the bones weren't completely healed, so he got a shorter cast on which he will wear for 3 more weeks. That, I am hoping, will be the end of his appointments, at least for the arm. The appointment itself was stressful, Israel was so scared when they were cutting the cast off, that he looked like he was going to pass out. And there were a whole slew of emotions coming from him, and some tears. But more than all of that, the waiting and waiting and waiting for the appointment. Do doctors offices ever run on time? We were there nearly two hours again, and the roads were horribly slippery when we were through, making the drive home stressful, then we had to get straight to work on homework so there would be enough time for bedtime procedures. Maybe I'm just a baby about it all, but doctors appointments stress me out.
A couple nights ago, Zach twisted his foot while walking. I say this without surprise, as he could trip over his own shadow. I wasn't sure if he was just trying to get attention because we'd been talking about Israel's arm/cast a lot recently in the anticipation of him getting it removed. But, I put an ace bandage on it, just in case, figuring the pampering wouldn't hurt him. By the end of that evening he was feeling much better and even running on said foot. Last night, though, he reinjured it, and refused to walk on it. I wasn't sure how bad it was, I couldn't see any swelling, so we just bandaged it and gave him a little pain medicine at bedtime. He had his first dental appointment scheduled today (first ever repair appointment, that is) and he was a little aprehensive about it. Zach has always creeped into my room to sleep with me during the night. Last night around 1AM he knocked on my door and I could hear him crying. He was still refusing to walk on his foot so I got him tucked into bed with me and that is where worry began to set in. Was I going to have to bring him to the doctor instead of his dentist, we'd been waiting so long to have the double coverage on insurance to be able to fix all the things wrong with his teeth. Then there was the question of schools being delayed because of the roads, and what if he needed crutches, I don't think he's coordinated enough to be able to use them...
But I made him try to walk this morning, and he could. Schools weren't delayed so I didn't have to worry how I was going to get them both to school and still keep Zach's appointment. So, once Israel was on his bus, Zach and I braved the icy roads to get him to the dentists. I had a lot of anxiety because I could tell Zach wasn't in the mood to try new things. The waiting room has video games, that helped. Then he went to sit in the chair, the dentist was, of course, running behind. But this time, it was to our advantage because the dental assistant was very calming, and got Zach to talk and talk like he hardly ever does. Then the dentist came in and she was minimally friendly. I had wondered if she read his chart and noticed that he is on the spectrum, maybe she didn't see that. She looked in his mouth with a mirror and quickly sat him back up, exclaiming that there was a significant change in the amount of damage from his last visit in late July, and what was the reason we hadn't started work on him. I told them I lost my job, but that we now had medical assistance. She took x-rays and revised his treatment plan, which was supposed to be 4 short visits. Now, she was recommending the work be done at a hospital, under anesthesia. She proceeded to fill some small cavities, just to see how he'd handle it. He choked and squirmed and she started to lose patience with his movement and not wanting to keep biting on the rubber thing she'd shoved in his mouth. I understand that she has a job to do, but when you specialize in PEDIATRIC dentistry, you ought to be a patient and gentle person. I was sent to a side office to schedule his procedure and it only irritated me further when I was told that this particular doctor only does one per month, and she was backed up until May. It is doubtful we will still have medical assistance by then, who knows, but if not, we certainly won't be able to afford the whole thing. Now, I know his teeth are bad. I know we should have had them taken care of a long time ago. The money is a very real reason why we haven't been able to, but even more than that is the way Zach and my husband and I feel right now. Zach now HATES the dentist, he practially RAN out of the office and begged to go to school. Not a huge fan of school, but just to be anywhere but the dentist. I feel sad for him, like they stepped all over his feelings or maybe more appropriately, didn't consider his feelings at all. Maybe that dentist did look at his chart and did see he's on the spectrum, and maybe she just assumed that he didn't have a brain or feelings because of it. Whatever the case, I have decided that I either want a different doctor to do the work, or I will go elsewhere. I know it isn't comfortable for anyone to go to the dentist, but imagine being tortured by noises besides, and being scolded for squirming when something makes you uncomfortable. He could have behaved much worse than he did, I was actually very proud of him.
After all of that, I am so sick of doctors offices. Don't get me wrong, Israel's team of professionals are absolutely the bees knees. His orthopedic surgeon even works with the Packers and is a top-notch doctor. I am just spent. And there are still so many issues we've yet to tackle while we have this extra insurance. Israel's cast again, Israel's possible diagnosis of ADHD, Zach's teeth, Zach's test of lead levels, Zach's hearing. They want us to get them updated on their shots and I am just not sure I want to take that leap yet. I know there has been so much controversy over vaccinations and Autism, but I am just not convinced that there isn't a connection since it was almost immediate the change in Zach after his 2 year vaccinations. As a parent whose heart wrenches every time I see a set back or challenge that neurotypical kids don't have to face, it is just too big a risk for me to take. And that is how I feel, no matter what doctor looks down their nose at me.
Thursday, January 6, 2011
Laughter
Something funny happened a few days ago, and it really struck me. Israel was trying to tickle Garrett's nose with a piece of fabric, and while he was doing it, Israel sneezed. Israel, Garrett and I were all laughing, and Zach forced a laugh with the rest of us. Israel and I continued laughing for about two minutes. I was amazed that he could pick up on the irony of that situation, that he, the tickler, was the one who sneezed instead of the tickled. It was bittersweet for me, because as genuinely proud as I was that Israel has the ability to pick up on things like that, I was equally sad that Zach doesn't seem to have that same ability. Granted, he is 1 1/2 years younger, but Zach is much more of a black-and-white kind of thinker than Israel. I have a feeling that Zach will never really "get" irony without it being explained.
There are a multitude of differences in my boys and how they react to their invironment. Israel understands mostly everything he encounters, but reacts very emotionally to even the smallest things. Zach is pretty easy going but get easily frustrated by challenges, particularily those that involve motor skills. Both are growing up so fast, I can't imagine what they will be like as teens. Sometimes that thought scares me more than I would like to admit.
There are a multitude of differences in my boys and how they react to their invironment. Israel understands mostly everything he encounters, but reacts very emotionally to even the smallest things. Zach is pretty easy going but get easily frustrated by challenges, particularily those that involve motor skills. Both are growing up so fast, I can't imagine what they will be like as teens. Sometimes that thought scares me more than I would like to admit.
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