For all of our optimism and our explanations of our son, our urging people to understand him and his unique difficulties, there is a flip side.
Yes, we get tired of it.
Like I said in an earlier blog, no one plans to have an autistic child. No one does this on purpose, unless you are one of those people who adopts a special needs child (and you, whoever you are, deserve a special place in heaven, in my opinion!).
You get over the initial heartbreak...watching your young child slip away from you and become less and less responsive, giving up the future you had envisioned for your son or daughter...the conversations, the play dates, the football games, the marriage, the grandchildren...He or she is on a different path now, it's a different future. You learn to accept it. You learn to not grieve.
So, but yes, we get tired of the challenges. There are some days when Logan's yelling at the top of his lungs is almost a constant. And yes, it has, literally, given me a headache. There are many days when I wish I could go out to the movies or to dinner with my husband without it being an ordeal. There are a lot of days when we get tired of the throwing, the mood swings, the odd behaviors. We get tired of never being able to get through a full session of church or go to class together because one of us is always running interference with Logan.
It sounds horrible to say all of this. But it's true. We love our son. We would not trade him. We would not send him back. But his challenges are our challenges, and we would be lying if we pretended it was all roses and that it was no big deal. And if it's not that great for us, if it's an ordeal for us that becomes too much sometimes, imagine what it must be for our son. The thing about Logan is that he knows that he's different. I have watched him, when no one thought I was looking, copy his brother and sister, trying to be like them. I have seen him come and sit down next to them while they were playing computer or watching TV, because he wanted to be included. For someone so brilliant, someone so smart and active in his mind and body, being unable to communicate, to convey emotion and opinion, to express himself or understand others' expressions, must be sheer hell.
So, what do we do when we get tired of it? Well, it's not something you can just stop doing. We wait it out. Sometimes, if Logan has had a particularly rough day, I take him, and we drive. We drive all over town, through my favorite neighborhoods, down by the lake, until he feels more in control and I do too. I once drove around town for half an hour while he threw a screaming fit in the back of the car. I don't remember what he was upset about. I just remember that the longer we drove, the calmer he got, until he finally just let it go. It gets better. Everything gets better if you just wait.
Monday, July 25, 2011
Sunday, July 17, 2011
It's All Chocolate
Some things can change in an instant. You get in your little rut, you think "This is my chaos, my life with all its problems, but the problems are familiar, and I know what to expect, so it may not be ideal but I deal with it."
About a week ago I found out I was pregnant.
I was very disbelieving. Like a "Shut up, get out of town, no freakin' way" kind of disbelief. A "let me take three pregnancy tests and also confirm it with a doctor" kind of disbelief. The tests all said I was. The doctor said "Congratulations."
I always wanted four kids. It's what my husband and I talked about when we got married, something we had planned on. But after we had Logan we thought perhaps we were done. Logan at his worst is like four children in one. So, I found out and I didn't say anything for almost a week. And where I expected fear, and anxiety, instead I felt a peace settle over me that I have not felt in a very long time. It was God whispering to me that everything is going to be okay, and that some things are meant to be.
The same week that I told my husband about the baby (he is thrilled, by the way), it became painfully clear that Logan's issues with aggression and anxiety run much deeper than either of us had ever suspected. I won't go into what happened; suffice it to say that something occurred that was a huge wake up call for both of us. It warranted a spur of the moment trip to the doctor. It warranted a new medication. And now we are playing "wait and see".
I am thankful for my children. Every single one of them. Each so special, each so gifted in their own way. Each with their own set of challenges. I should be scared of the future. I should be frightened of bringing another child into a home that is already so fraught with tension and unique circumstances. But I think fear is for people who are lacking in faith...and over the past two or three years, I have learned that sometimes, faith is all you have. As Forrest Gump would say: "Life is like a box of chocolates, and you never know which one you're going to get." To that I want to add my two cents: It's ALL chocolate, so it doesn't matter!
About a week ago I found out I was pregnant.
I was very disbelieving. Like a "Shut up, get out of town, no freakin' way" kind of disbelief. A "let me take three pregnancy tests and also confirm it with a doctor" kind of disbelief. The tests all said I was. The doctor said "Congratulations."
I always wanted four kids. It's what my husband and I talked about when we got married, something we had planned on. But after we had Logan we thought perhaps we were done. Logan at his worst is like four children in one. So, I found out and I didn't say anything for almost a week. And where I expected fear, and anxiety, instead I felt a peace settle over me that I have not felt in a very long time. It was God whispering to me that everything is going to be okay, and that some things are meant to be.
The same week that I told my husband about the baby (he is thrilled, by the way), it became painfully clear that Logan's issues with aggression and anxiety run much deeper than either of us had ever suspected. I won't go into what happened; suffice it to say that something occurred that was a huge wake up call for both of us. It warranted a spur of the moment trip to the doctor. It warranted a new medication. And now we are playing "wait and see".
I am thankful for my children. Every single one of them. Each so special, each so gifted in their own way. Each with their own set of challenges. I should be scared of the future. I should be frightened of bringing another child into a home that is already so fraught with tension and unique circumstances. But I think fear is for people who are lacking in faith...and over the past two or three years, I have learned that sometimes, faith is all you have. As Forrest Gump would say: "Life is like a box of chocolates, and you never know which one you're going to get." To that I want to add my two cents: It's ALL chocolate, so it doesn't matter!
Wednesday, July 13, 2011
He Loves Fish Sauce
Know what fish sauce is? It's nasty. It's anchovy extract, water, salt, a little sugar...and it smells. Bad. We cook with it.
It's great if you put a few drops on rice and then simmer the rice. It's also used a lot in Asian cooking. It was NOT meant to be drunk by itself!
The last two or three days, Logan has erupted into massive temper tantrums. It's the first time, in a very, very LONG time, that he has done this, and it's been really disturbing. When a child does this, you wonder if they are regressing. You wonder if they are starting to lose some hard-earned communication skills. And these tantrums erupted over nothing..he was put into time-out for throwing a shirt at the ceiling fan, and another time for banging on the window (we are tired of broken windows).
The screaming was awful...and I felt so sorry for him. I knew he was upset and in distress and there was absolutely nothing I could do to fix it except just ride it out.
Later it all made sense when I opened the refrigerator and found the almost empty bottle of fish sauce. I couldn't believe it. I don't think he drank all of it...I think some of it went into his "manwhich" concoction that he made the other day...but autistic children can and do eat odd things. Mustard or ketchup straight from the bottle. Raw onions....bit into like an apple. Raw potatoes, bell peppers, carrots, and squash. Salt. Wasabi. So the fish sauce doesn't surprise me, and now we have to lock our fridge.
It's great if you put a few drops on rice and then simmer the rice. It's also used a lot in Asian cooking. It was NOT meant to be drunk by itself!
The last two or three days, Logan has erupted into massive temper tantrums. It's the first time, in a very, very LONG time, that he has done this, and it's been really disturbing. When a child does this, you wonder if they are regressing. You wonder if they are starting to lose some hard-earned communication skills. And these tantrums erupted over nothing..he was put into time-out for throwing a shirt at the ceiling fan, and another time for banging on the window (we are tired of broken windows).
The screaming was awful...and I felt so sorry for him. I knew he was upset and in distress and there was absolutely nothing I could do to fix it except just ride it out.
Later it all made sense when I opened the refrigerator and found the almost empty bottle of fish sauce. I couldn't believe it. I don't think he drank all of it...I think some of it went into his "manwhich" concoction that he made the other day...but autistic children can and do eat odd things. Mustard or ketchup straight from the bottle. Raw onions....bit into like an apple. Raw potatoes, bell peppers, carrots, and squash. Salt. Wasabi. So the fish sauce doesn't surprise me, and now we have to lock our fridge.
Tuesday, July 12, 2011
Don't Stim In The Kitchen!!
I wrote about stimming, and about how autistic children do things to stimulate their five senses...touch, smell, taste, sight, sound. Well...I think Logan likes to stim through smell and taste, or maybe he is just creative. Anyhow, yesterday, he indicated that he wanted me to open a can of Manwhich. I don't know why we had it, we never eat that stuff. Anyway, I opened it, because from him, it was not an unusual request. He often eats things straight from the can. Well, once he saw it he didn't want it. I set it down on the counter and got distracted (easy to do in our house) and there it stayed.
Fast forward about an hour. I walked into the kitchen and this is what I saw: Logan stirring something in a big green bowl. In the bowl was: the Manwhich, all of our ketchup, some mustard, eggs, and some sliced onions (don't want to know). I said, "Are ya cooking, Logan?" (He loves to "cook".)
He turned around, grinned, and lost his grip on the bowl, which splattered his "Manwhich mix" all over him. At least he was wearing a swimsuit.
Fast forward about an hour. I walked into the kitchen and this is what I saw: Logan stirring something in a big green bowl. In the bowl was: the Manwhich, all of our ketchup, some mustard, eggs, and some sliced onions (don't want to know). I said, "Are ya cooking, Logan?" (He loves to "cook".)
He turned around, grinned, and lost his grip on the bowl, which splattered his "Manwhich mix" all over him. At least he was wearing a swimsuit.
Monday, July 11, 2011
There Was Some Confusion
Okay, when I wrote the blog "What Family and Friends Can Do" I had a couple of friends who really took that to heart and thought they must have done something to offend me or my family. So, this is my disclaimer stating the following: While I did encounter some of the things I wrote about in that particular post, the post itself was not written to target a specific individual, and it was not written in order to "call someone out". I really meant what I said at the very end of it: my family has been blessed with a lot of wonderful people in our lives, relatives and friends alike, who understand our son and what his unique challenges are. And we also understand that some people we encounter, like a clerk at a store, for instance, or just some random person, may see Logan's behavior and be utterly confused by it. So, to any family or friends that thought that post was written specifically for them...I apologize if you were offended or worried that I was referring to you.
In reference to the post "Operation OILHIT"...we never got that operation of the ground. It would have been ideal, to put Logan in a giant hollow inflatable thingy, but it was, in fact, very cumbersome, and we didn't have the required air pump to accomplish such a task. So, we took it back to the store and are hoping to replace it with something a little more practical soon.
In reference to the most recent post, which was a poem about something in our chimney: There IS something in our chimney, and we really DON'T know what it is. Our oldest son has been playing "Billy the Exterminator" and has been poking a giant stick up the shaft of the chimney. Whatever is up there gets really mad and really loud. I finally asked him to leave it alone, lest we be beset by a gaggle of angry geckos or a herd of rabid chinchillas. (The latter, Nathan has informed me, is impossible, since chinchillas are found in the mountains. But ya never know! They could be a special breed of hairless chinchillas found only in Texas!)
I hope this clears up any confusion or questions, and again, we appreciate everything our family and friends do for us, each and every day.
In reference to the post "Operation OILHIT"...we never got that operation of the ground. It would have been ideal, to put Logan in a giant hollow inflatable thingy, but it was, in fact, very cumbersome, and we didn't have the required air pump to accomplish such a task. So, we took it back to the store and are hoping to replace it with something a little more practical soon.
In reference to the most recent post, which was a poem about something in our chimney: There IS something in our chimney, and we really DON'T know what it is. Our oldest son has been playing "Billy the Exterminator" and has been poking a giant stick up the shaft of the chimney. Whatever is up there gets really mad and really loud. I finally asked him to leave it alone, lest we be beset by a gaggle of angry geckos or a herd of rabid chinchillas. (The latter, Nathan has informed me, is impossible, since chinchillas are found in the mountains. But ya never know! They could be a special breed of hairless chinchillas found only in Texas!)
I hope this clears up any confusion or questions, and again, we appreciate everything our family and friends do for us, each and every day.
Saturday, July 9, 2011
What Family and Friends Can Do
After writing about the challenges of raising a child on the spectrum, you may be wondering what you could possibly do to help that friend or family member that faces these challenges. My own mother will sometimes look at me and shake her head and say, "I don't know how you do it." I see her two or three times a week. She's familiar with our situation and the unique milestones that it creates in our lives.
So, what can you do? Sometimes simple encouragement is best. "How is your day?" "How are your kids?" "Do you want to go out for an ice cream?" Really, even getting out of the house for thirty minutes can work wonders for a person.
Does the person have other kids? Offer to watch them for an hour or two! It gives the mom or dad a break, a chance to regroup and focus on what's really important.
Educate yourself. Do you care about this person? Do you care about the kids or are you related to them? Read. Read everything you can find on spectrum disorders. It will bring a whole new perspective to how you view the situation that your loved one is in.
And here are some of the don'ts that you can refrain from doing. These are things I've encountered, and although they were well meaning and I'm sure the person or persons had what they thought were my best interests at heart, all these things ended up doing was making myself and my husband very frustrated and left us feeling more than a little disheartened:
Don't try to fix it. When you come into contact with this family, or this loved one, and their child who has this spectrum disorder, you may have all kinds of great advice and suggestions on what they could do differently or who they could talk to. You may feel that what you are seeing is not working and is not they way they should be handling the situation. Unless there is some sort of physical or emotional abuse involved, try to refrain from "helping" in this manner. Trust me. Anyone who has a disabled child has already exhausted all kinds of avenues and tried all kinds of things. They know their child much better than you do. They've seen this kid at their best and their worst, they know all the triggers, they know the tricks for getting in and out of emotional situations with this kid, and having someone else come into the situation who starts offering advice and telling them what they need to be doing will only lead to a lot of anger and frustration. It's one thing to say, hey, I know so and so and they are a counselor, here is their number if you want to call them. But "critiquing" the situation and blithely offering advice shows an insensitivity that is more than infuriating and just short of appalling.
Don't try to change it. Don't tell these people what they should do instead, or question why they are doing things with their child a certain way. There's a reason. They don't have to justify themselves to you.
Don't try to organize them, their lives, or their home. Sometimes dealing with a special needs child is a 24/7 job. It's very draining, emotionally. It can also be draining, financially. Coming over for a visit and questioning why the furniture is arranged a certain way, why the walls have holes in them, or why every single door and window has a lock on it is rude. It doesn't matter if these are your children you're asking this of or some other person. It's rude to go into someone's home and make comments on the interior of it just because it doesn't fit your perception of how it should be. It's also rude to comment on someone else's lifestyle just because they aren't making the decisions you think they should make.
Don't make promises you can't keep. Don't say, we're going to help you, or anything you need, just ask, if you don't mean it! Parents of special needs children learn who they can rely on very quickly. They also know if someone is just blowing smoke.
Don't make assumptions. Don't assume that just because someone has this child, that keeping them out of the loop on family matters is sparing them some stress. Don't avoid extending invitations to them, either, assuming that they will decline, or out of fear that they will bring their child to an event that is not designed for such children. We appreciate simple honesty. If you are having a party, or some other kind of get together, and you want to invite someone, but you're afraid they'll bring their child, who is easily excited or out of control, a simple phrase like this will convey everything you want to convey: "We are having a get together on such and such date. We would love for you to come. We are concerned that Billy (or Joey or Sue or whatever) might be overwhelmed at this function, so we are letting you know well in advance so you can find a sitter." Trust me, we get it! And we will be grateful to you, for sparing us a potentially disastrous evening by letting us know it's not designed for children like ours! We will also be grateful to you for including us, since opportunities for us to get out are few and far between. If you are a family member and something happens, don't intentionally NOT tell us about it, because you think it would add too much to the burden we already carry. We rely heavily on family connections, even if they are far away. Keeping us out of the loop sends a message to us that we aren't really part of the family and that you can't be bothered to let us know what's going on.
And finally, let us talk. Sometimes, having someone to talk to makes a huge difference. Don't assume that our talking to you is a request for you to fix the problem or the situation. Sometimes all we need is a good listener. And ask about our child. A friend of mine had a special needs child and it was very odd...some of the family members would ask about the "normal" kids, but this special needs child seemed to always get left out of the loop, even at birthdays. It was strange, and again, rude.
Now that I have been on my soapbox, I want to say thank you. Thank you, from the bottom of my heart, to my mother, my brother, and my sister in law, who consistently provide love and support to us, and who help us when we need it. Thank you to them for treating my son the way they treat all the other cousins/grandkids. And thank you to the close friends I have who ask me questions because they want to understand, and who provide help whenever they can, even if it's just in the form of a phone call or a quick trip out for ice cream! We are richly blessed with these people in our lives, the wonderful and gifted teachers that my son has, and the incredible people we know who see him as the special little guy that he is.
So, what can you do? Sometimes simple encouragement is best. "How is your day?" "How are your kids?" "Do you want to go out for an ice cream?" Really, even getting out of the house for thirty minutes can work wonders for a person.
Does the person have other kids? Offer to watch them for an hour or two! It gives the mom or dad a break, a chance to regroup and focus on what's really important.
Educate yourself. Do you care about this person? Do you care about the kids or are you related to them? Read. Read everything you can find on spectrum disorders. It will bring a whole new perspective to how you view the situation that your loved one is in.
And here are some of the don'ts that you can refrain from doing. These are things I've encountered, and although they were well meaning and I'm sure the person or persons had what they thought were my best interests at heart, all these things ended up doing was making myself and my husband very frustrated and left us feeling more than a little disheartened:
Don't try to fix it. When you come into contact with this family, or this loved one, and their child who has this spectrum disorder, you may have all kinds of great advice and suggestions on what they could do differently or who they could talk to. You may feel that what you are seeing is not working and is not they way they should be handling the situation. Unless there is some sort of physical or emotional abuse involved, try to refrain from "helping" in this manner. Trust me. Anyone who has a disabled child has already exhausted all kinds of avenues and tried all kinds of things. They know their child much better than you do. They've seen this kid at their best and their worst, they know all the triggers, they know the tricks for getting in and out of emotional situations with this kid, and having someone else come into the situation who starts offering advice and telling them what they need to be doing will only lead to a lot of anger and frustration. It's one thing to say, hey, I know so and so and they are a counselor, here is their number if you want to call them. But "critiquing" the situation and blithely offering advice shows an insensitivity that is more than infuriating and just short of appalling.
Don't try to change it. Don't tell these people what they should do instead, or question why they are doing things with their child a certain way. There's a reason. They don't have to justify themselves to you.
Don't try to organize them, their lives, or their home. Sometimes dealing with a special needs child is a 24/7 job. It's very draining, emotionally. It can also be draining, financially. Coming over for a visit and questioning why the furniture is arranged a certain way, why the walls have holes in them, or why every single door and window has a lock on it is rude. It doesn't matter if these are your children you're asking this of or some other person. It's rude to go into someone's home and make comments on the interior of it just because it doesn't fit your perception of how it should be. It's also rude to comment on someone else's lifestyle just because they aren't making the decisions you think they should make.
Don't make promises you can't keep. Don't say, we're going to help you, or anything you need, just ask, if you don't mean it! Parents of special needs children learn who they can rely on very quickly. They also know if someone is just blowing smoke.
Don't make assumptions. Don't assume that just because someone has this child, that keeping them out of the loop on family matters is sparing them some stress. Don't avoid extending invitations to them, either, assuming that they will decline, or out of fear that they will bring their child to an event that is not designed for such children. We appreciate simple honesty. If you are having a party, or some other kind of get together, and you want to invite someone, but you're afraid they'll bring their child, who is easily excited or out of control, a simple phrase like this will convey everything you want to convey: "We are having a get together on such and such date. We would love for you to come. We are concerned that Billy (or Joey or Sue or whatever) might be overwhelmed at this function, so we are letting you know well in advance so you can find a sitter." Trust me, we get it! And we will be grateful to you, for sparing us a potentially disastrous evening by letting us know it's not designed for children like ours! We will also be grateful to you for including us, since opportunities for us to get out are few and far between. If you are a family member and something happens, don't intentionally NOT tell us about it, because you think it would add too much to the burden we already carry. We rely heavily on family connections, even if they are far away. Keeping us out of the loop sends a message to us that we aren't really part of the family and that you can't be bothered to let us know what's going on.
And finally, let us talk. Sometimes, having someone to talk to makes a huge difference. Don't assume that our talking to you is a request for you to fix the problem or the situation. Sometimes all we need is a good listener. And ask about our child. A friend of mine had a special needs child and it was very odd...some of the family members would ask about the "normal" kids, but this special needs child seemed to always get left out of the loop, even at birthdays. It was strange, and again, rude.
Now that I have been on my soapbox, I want to say thank you. Thank you, from the bottom of my heart, to my mother, my brother, and my sister in law, who consistently provide love and support to us, and who help us when we need it. Thank you to them for treating my son the way they treat all the other cousins/grandkids. And thank you to the close friends I have who ask me questions because they want to understand, and who provide help whenever they can, even if it's just in the form of a phone call or a quick trip out for ice cream! We are richly blessed with these people in our lives, the wonderful and gifted teachers that my son has, and the incredible people we know who see him as the special little guy that he is.
Thursday, July 7, 2011
The Trip Back
Okay, so the other day this guy came over to give us an estimate on replacing our roof. He was here about five or ten minutes, then he goes to his truck and pulls out the cutest yellow lab puppy I have ever seen. Sets it down in the front yard, then proceeds to make notes about the roof or talk on his cell phone or whatever.
I really liked that puppy.
I'm not sure why he brought it and set it down in my front yard. I mean, what was this guy trying to pull? Was he trying to distract me while he totted up all the repairs my roof needed? Could he tell that here was a lady who is a sucker for anything cute and furry? (except rats, which are NOT cute and which I can't really speak of without saying words a lady shouldn't say).
Anyway, within minutes my children had "confiscated" the puppy and took it to the backyard. After a little while the man says, "Do you know anyone who wants a yellow lab puppy?" And I thought, huh?
Turns out the man needed to give it away due to circumstances beyond his control. Turns out the puppy is in our house, right now, this very MINUTE, playing with our two shih tzus, and turns out I am trying NOT to think about how HUGE this dog is going to get.
I really don't know what made me keep it. We already had two, not to mention the bird, and the Uromastyx, and the hamster, and the random geckos that my son catches and studies and then releases. When my husband pulled in the driveway and saw me holding that puppy, he backed out again. It was a joke. He didn't really leave. But. Many a truth is spoken in jest, as my friend Robbie likes to say.
I guess one of the reasons was Logan's reaction to the dog. It's not like he sits on the floor and plays with it all the time. But...the smile that broke across his face when he saw it, and the way he tried to pick it up and carry it, and actually pet it instead of acting annoyed with it the way he does with our shih tzus...that was worth something to me. And sometimes, for whatever reason, some things are just important, and you don't know why they're important until much, much later, when you can finally see the whole picture.
There is also what I like to call "chaos point". When your life is so disjointed and so chaotic with the various challenges you have, when you feel like you simply cannot handle one more thing, and then someone hands you one more thing...and then suddenly, all of that other stuff just doesn't matter. You've reached your "chaos point"...it's like a runner hitting their wall and then continuing on, it's like Ethan Hawke in Gattaca outswimming his genetically superior brother every time, finally admitting that he didn't save anything for the trip back...you reach a point where some things just don't matter anymore. Logan broke a window or he got too much water on the floor, or something isn't going the way it's supposed to...who cares. I never save anything for the trip back.
I really liked that puppy.
I'm not sure why he brought it and set it down in my front yard. I mean, what was this guy trying to pull? Was he trying to distract me while he totted up all the repairs my roof needed? Could he tell that here was a lady who is a sucker for anything cute and furry? (except rats, which are NOT cute and which I can't really speak of without saying words a lady shouldn't say).
Anyway, within minutes my children had "confiscated" the puppy and took it to the backyard. After a little while the man says, "Do you know anyone who wants a yellow lab puppy?" And I thought, huh?
Turns out the man needed to give it away due to circumstances beyond his control. Turns out the puppy is in our house, right now, this very MINUTE, playing with our two shih tzus, and turns out I am trying NOT to think about how HUGE this dog is going to get.
I really don't know what made me keep it. We already had two, not to mention the bird, and the Uromastyx, and the hamster, and the random geckos that my son catches and studies and then releases. When my husband pulled in the driveway and saw me holding that puppy, he backed out again. It was a joke. He didn't really leave. But. Many a truth is spoken in jest, as my friend Robbie likes to say.
I guess one of the reasons was Logan's reaction to the dog. It's not like he sits on the floor and plays with it all the time. But...the smile that broke across his face when he saw it, and the way he tried to pick it up and carry it, and actually pet it instead of acting annoyed with it the way he does with our shih tzus...that was worth something to me. And sometimes, for whatever reason, some things are just important, and you don't know why they're important until much, much later, when you can finally see the whole picture.
There is also what I like to call "chaos point". When your life is so disjointed and so chaotic with the various challenges you have, when you feel like you simply cannot handle one more thing, and then someone hands you one more thing...and then suddenly, all of that other stuff just doesn't matter. You've reached your "chaos point"...it's like a runner hitting their wall and then continuing on, it's like Ethan Hawke in Gattaca outswimming his genetically superior brother every time, finally admitting that he didn't save anything for the trip back...you reach a point where some things just don't matter anymore. Logan broke a window or he got too much water on the floor, or something isn't going the way it's supposed to...who cares. I never save anything for the trip back.
Wednesday, July 6, 2011
Fragile X
Fragile X. What a strange name. What is it, what does it mean?
I felt compelled to write about it after a reading an article last week. A woman and her husband gave birth to a son. By age two, they noticed that something wasn't right. He wasn't crawling, he wasn't babbling, he wasn't meeting the developmental milestones that most children reach at that age. Very concerning. So they had another child, under the advice of their doctor, who felt that a sibling would encourage development. But the next baby exhibited the same troubling behaviors, and they knew something was wrong.
Fragile X is a genetic disorder that causes intellectual disability. It can cause problems with balance, walking, development, behavior, speech/language, and learning. To add to the complication, many individuals with Fragile X also exhibit spectrum disorders (autism) and ad/hd. There are also physical characteristics that accompany Fragile X including a large head, long, narrow face, prominent ears, and overly flexible joints.
There is no hope for someone "overcoming" Fragile X. There is no cure. The symptoms can range from mile to severe, but generally, the affected individual will remain that way well into old age, After the age of 40, males with Fragile X will start to exhibit other complications.
I write about this to draw attention to the plight that every special needs parent faces, the problem that looms from the minute you learn of your child's disability and remains with you for the rest of your life: What will happen to them when I'm gone?
There are such things as adult daycare centers. But the quality and quantity of such places is lacking. There are a few that are great...wonderful, well-lit places with caring staff. Places where you can leave your adult special needs child and not feel anxious or worried about what might happen when you're not there. But such places are hard to find. In the meantime, what does a parent do, who cannot find someone to take that burden off their hands, for a few hours? What do I do, in the summertime when school is out and Logan is home ALL day, EVERY day?
You take them with you. You take them with you everywhere...to the store, to church, to buy gas, to run an errand, to the doctor...anyplace you have to go, they are there, they are your shadow, you cannot leave them at home to play on the computer for an hour. They are your constant companion. I am really blessed...I have family that I can call on for support when the going gets really tough. I am so thankful for them and for all they do for me...and I hope if they read this, they understand how much they are all appreciated. But what about people that don't have family and who don't have anyone to turn to?
It's one day at a time, one hour at a time. All the time.
I felt compelled to write about it after a reading an article last week. A woman and her husband gave birth to a son. By age two, they noticed that something wasn't right. He wasn't crawling, he wasn't babbling, he wasn't meeting the developmental milestones that most children reach at that age. Very concerning. So they had another child, under the advice of their doctor, who felt that a sibling would encourage development. But the next baby exhibited the same troubling behaviors, and they knew something was wrong.
Fragile X is a genetic disorder that causes intellectual disability. It can cause problems with balance, walking, development, behavior, speech/language, and learning. To add to the complication, many individuals with Fragile X also exhibit spectrum disorders (autism) and ad/hd. There are also physical characteristics that accompany Fragile X including a large head, long, narrow face, prominent ears, and overly flexible joints.
There is no hope for someone "overcoming" Fragile X. There is no cure. The symptoms can range from mile to severe, but generally, the affected individual will remain that way well into old age, After the age of 40, males with Fragile X will start to exhibit other complications.
I write about this to draw attention to the plight that every special needs parent faces, the problem that looms from the minute you learn of your child's disability and remains with you for the rest of your life: What will happen to them when I'm gone?
There are such things as adult daycare centers. But the quality and quantity of such places is lacking. There are a few that are great...wonderful, well-lit places with caring staff. Places where you can leave your adult special needs child and not feel anxious or worried about what might happen when you're not there. But such places are hard to find. In the meantime, what does a parent do, who cannot find someone to take that burden off their hands, for a few hours? What do I do, in the summertime when school is out and Logan is home ALL day, EVERY day?
You take them with you. You take them with you everywhere...to the store, to church, to buy gas, to run an errand, to the doctor...anyplace you have to go, they are there, they are your shadow, you cannot leave them at home to play on the computer for an hour. They are your constant companion. I am really blessed...I have family that I can call on for support when the going gets really tough. I am so thankful for them and for all they do for me...and I hope if they read this, they understand how much they are all appreciated. But what about people that don't have family and who don't have anyone to turn to?
It's one day at a time, one hour at a time. All the time.
I Feel For You
The other night my husband and I were watching an episode of "Hoarders". I love this show. First of all, it makes me want to throw things away. Second of all, the motivations of people and why they behave and do the things they do fascinate me. And I also love a good ending...seeing someone overcome something, or want to conquer a problem...I like that.
Well, we were watching this episode and there was a single dad on there. He had decided to adopt these two children. One of the children was about ten or so, and he had some behavioral issues. He was born addicted to cocaine, and as we watched this episode I couldn't help it. I just cried. The house, besides being filled with extraneous things, bore the marks of a developmentally disabled child with aggression issues. The windows were broken or covered with bubble wrap or peg board. The mattresses were on the floor because the little boy had broken the bed frames. There was a lot of footage of this child having emotional outbursts, grabbing things and flinging them at people in rage or agitation, or suddenly hitting his sister as she tried to sit on the couch and play with her toys. When his father would grab him to try and calm him down, he would become more agitated, hit his father, and bite him. (Thankfully, Logan is not a biter.)
I felt so bad for that father and for the kids. It's an almost impossible situation, dealing with a child who is like that constantly, and then dealing with it alone. Logan is finally at a point where he can entertain himself for a while. He doesn't have the fits he used to have, and although he is still destructive in his behavior, he is better able to communicate. In some ways, also, watching this was a relief. It showed me, once again, that no matter how rough you think you have it, there is always going to be someone who has it worse than you, and that the things you are experiencing, even though you may think they are unique...These things happen to other people, too, and you are not alone in your situation.
Friday, July 1, 2011
I Am Not Your Punching Bag
A few days ago my husband passed by a house that had a small punching bag for sale. It's actually in great condition...it's the kind that's upright, on a steel pole and spring, and you fill the base of it with sand to keep it from tipping over. He bought it from the guy and brought it home.
We were hoping to be able to channel some of Logan's aggression off of us and onto this punching bag. Last night he put the sand in the bottom and put it up in our front room. Logan went crazy. Open handed slaps, knuckle punches, tackles, kicks...he even started beating it with a shirt. Finally he bent the thing back and I said, "Don't do that! You're going to get hit in the face!" So he let it go and he got hit in the face. He looked stunned. Not in pain, just stunned. And offended. He stared at the punching bag and said, "Hey, that's rude!" And started waling on it again!
So far it has worked really well when he gets agitated and starts taking it out on us or the windows. (Yes, he hits windows.) If you have an autistic child that exhibits a lot of aggression, I would definitely try this!
We were hoping to be able to channel some of Logan's aggression off of us and onto this punching bag. Last night he put the sand in the bottom and put it up in our front room. Logan went crazy. Open handed slaps, knuckle punches, tackles, kicks...he even started beating it with a shirt. Finally he bent the thing back and I said, "Don't do that! You're going to get hit in the face!" So he let it go and he got hit in the face. He looked stunned. Not in pain, just stunned. And offended. He stared at the punching bag and said, "Hey, that's rude!" And started waling on it again!
So far it has worked really well when he gets agitated and starts taking it out on us or the windows. (Yes, he hits windows.) If you have an autistic child that exhibits a lot of aggression, I would definitely try this!
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