If that's the case, then my entries would be soooo much shorter! Here's A and his sister, K:
Tuesday, January 30, 2007
You Are What You Eat
There is another area of life with A that coincides neatly with the whole sensitivity/insensitivity conundrum: his eating habits. A does not have the dietary challenges that some kids (and adults) with autism face, but he definitely has some textural issues.
For example, A will not eat any food that is liquid with solids in it. This rules out cereal with milk, soups of any kind (even if they don't have solid pieces of anything). He is getting to where he'll ingest yogurt with fruit in it, or tapioca pudding ~ but then, there are more mainstream individuals out there that hate the latter anyway, so that one's not such a big deal. Oatmeal is hit or miss; sometimes he'll eat it, other times.... I've learned it's really hard to get oatmeal off a textured wall. He will eat dry cereal, and drink milk from a cup though. He also has no problems with drinking anything usually considered a beverage. Attempts to be sneaky and put soup in a cup to drink don't work out so well.
Sticky substances like syrup or honey on pancakes/waffles are fine, so long as he's eating. Once done with the meal, though, he tries to rub his hands clean on anything he can find (other than the obvious napkin, provided for such a need), including Mom's clothing and the couch. I want to personally thank whoever invented slipcovers and stain removers, as they are lifesavers. We don't quite have the whole hand-washing thing down just yet. He won't put his hands in the running water without a fight, and I can't plug the sink and fill it a little bit without him splashing all over the bathroom. It's a work in progress.
Foods also need to be cut into small pieces, or he will just pick at them. If we give him a whole pancake or sandwich, he doesn't seem to get how to eat it. He'll clean his plate if it's bite-sized pieces.
A's current likes and dislikes otherwise meet with typical toddler standards. He loves cheese, spaghetti made with elbow macaroni instead of long noodles, and fruits but doesn't care for veggies in any size, shape or form. (We make him eat them anyway). He is a cheese and fruit monster!
For example, A will not eat any food that is liquid with solids in it. This rules out cereal with milk, soups of any kind (even if they don't have solid pieces of anything). He is getting to where he'll ingest yogurt with fruit in it, or tapioca pudding ~ but then, there are more mainstream individuals out there that hate the latter anyway, so that one's not such a big deal. Oatmeal is hit or miss; sometimes he'll eat it, other times.... I've learned it's really hard to get oatmeal off a textured wall. He will eat dry cereal, and drink milk from a cup though. He also has no problems with drinking anything usually considered a beverage. Attempts to be sneaky and put soup in a cup to drink don't work out so well.
Sticky substances like syrup or honey on pancakes/waffles are fine, so long as he's eating. Once done with the meal, though, he tries to rub his hands clean on anything he can find (other than the obvious napkin, provided for such a need), including Mom's clothing and the couch. I want to personally thank whoever invented slipcovers and stain removers, as they are lifesavers. We don't quite have the whole hand-washing thing down just yet. He won't put his hands in the running water without a fight, and I can't plug the sink and fill it a little bit without him splashing all over the bathroom. It's a work in progress.
Foods also need to be cut into small pieces, or he will just pick at them. If we give him a whole pancake or sandwich, he doesn't seem to get how to eat it. He'll clean his plate if it's bite-sized pieces.
A's current likes and dislikes otherwise meet with typical toddler standards. He loves cheese, spaghetti made with elbow macaroni instead of long noodles, and fruits but doesn't care for veggies in any size, shape or form. (We make him eat them anyway). He is a cheese and fruit monster!
Monday, January 29, 2007
Sense and Sensibility
It was 27 degrees Fahrenheit outside the other day, and my son opened up the back door and ran outside barefoot, and in a short-sleeved shirt. (Yes, he had pants on). He didn't seem to notice the cold. I stood by the back door, holding it open, figuring he'd jet back inside quickly. After a couple of minutes, since he didn't seem to be personally motivated to return to the warmth of his house, I brought him inside. He was not happy with me; he wanted to stay outside and play.
This is one of the curiosities that Z (my husband) and I have noticed about A: as sensitive as his sense of touch is, sometimes he seems to -- somehow -- shut off his nerves. We assume this is a coping strategy. Initial things that used to drive him crazy as a newborn were being held and cuddled, the little seam on the toes of his socks. And temperature changes, hats, wind, dirtying his diaper, having his diaper changed, the list goes on. Then he abruptly stopped the screaming; it was like a switch had been thrown. But he no longer cared if he was cold, hot, or had poopy pants.
A still doesn't seem to notice if it's really hot or really cold. He could be wearing a wool sweater in the middle of July, or a swimsuit in the dead of winter and he wouldn't care. (He'd be a great candidate for the Polar Bear Club if he ever learns how to swim!) He also gives no indication that he's gone to the bathroom. A is still in diapers; all potty training attempts thus far have failed miserably. And messily. I have to check him regularly, since he will not tell me when he's voided. If I get sidetracked by housework, the dog, his sister, etc, I will suddenly notice that his pants are suspiciously droopy, or bulging to the rear with what appears to be a softball stuffed down the back of his pants. You'd think that would be uncomfortable, right? A just continues doing whatever he's doing at the moment, it doesn't even faze him. I know that some kids who continuously have to sit in dirty diapers develop a tolerance for it, but this is not the case with A. His diapers were/are always changed with regularity; having "softball pants" is not a common occurrence.
This not telling us is very frustrating for Z and I, but we do understand that it's just part of what A's dealing with. There are times when I just don't handle the frustration as well as I should, though; I do get disgusted with some of the diapers. I don't get mad at my son, but I am still sometimes not in the best frame of mind when it comes to the diaper issue. We are in the process of learning some new techniques that (we're hoping and praying) will do the trick of potty training him. We also realize that he's not quite 3 1/2, and that some kids take longer to potty train than others.
There are a few things that still disturb his sense of touch. Coats, for example. He has had tantrums every year when he has to start wearing coats again, ostensibly because he's not used to them. This year, we're finally past the fits and he just whines and tries to remove the offending apparel. Every day. This aversion includes the snazzy little corduroy sport coat my mother sent at Christmas, and raincoats. We're quite sure A will one day remember how to make zippers function (he used to do it all the time), but for now they effectively keep his jacket on. He also intensely dislikes his backpack for school. I'm pretty sure that the correct grammatical forms of "pure hatred" could be used interchangeably with "intense dislike" in the prior sentence. And every time we get new shoes for him, if they feel different on his feet he will cry and be very upset for a few days (whenever he has to wear them). It takes a few days for him to get used to them, and then he's fine.
A still doesn't like hats very much. He really doesn't like anything touching his head, as a general rule. Washing his hair and giving him a haircut are two events that are just TONS of fun for everyone involved. I have been sorely tempted to duct tape my son to the chair during the latter. I never will, of course, but it sure is fun to consider when in the throes of a particularly loud haircutting session. Just being honest! As humans we tend to "put our best face forward" and always say "fine" whenever anyone asks how we are, even if we're not. And most of us would never admit to harboring fantasies of, say, ditching the entire family and going to spend a week in [insert exotic location here or duct-taping our offspring to a chair. And then shake our heads, smile ruefully, and get back into the activity at hand, whether that be folding socks or cutting your kiddo's hair. But I admit that I do on occasion.... [remove soapbox]
This is one of the curiosities that Z (my husband) and I have noticed about A: as sensitive as his sense of touch is, sometimes he seems to -- somehow -- shut off his nerves. We assume this is a coping strategy. Initial things that used to drive him crazy as a newborn were being held and cuddled, the little seam on the toes of his socks. And temperature changes, hats, wind, dirtying his diaper, having his diaper changed, the list goes on. Then he abruptly stopped the screaming; it was like a switch had been thrown. But he no longer cared if he was cold, hot, or had poopy pants.
A still doesn't seem to notice if it's really hot or really cold. He could be wearing a wool sweater in the middle of July, or a swimsuit in the dead of winter and he wouldn't care. (He'd be a great candidate for the Polar Bear Club if he ever learns how to swim!) He also gives no indication that he's gone to the bathroom. A is still in diapers; all potty training attempts thus far have failed miserably. And messily. I have to check him regularly, since he will not tell me when he's voided. If I get sidetracked by housework, the dog, his sister, etc, I will suddenly notice that his pants are suspiciously droopy, or bulging to the rear with what appears to be a softball stuffed down the back of his pants. You'd think that would be uncomfortable, right? A just continues doing whatever he's doing at the moment, it doesn't even faze him. I know that some kids who continuously have to sit in dirty diapers develop a tolerance for it, but this is not the case with A. His diapers were/are always changed with regularity; having "softball pants" is not a common occurrence.
This not telling us is very frustrating for Z and I, but we do understand that it's just part of what A's dealing with. There are times when I just don't handle the frustration as well as I should, though; I do get disgusted with some of the diapers. I don't get mad at my son, but I am still sometimes not in the best frame of mind when it comes to the diaper issue. We are in the process of learning some new techniques that (we're hoping and praying) will do the trick of potty training him. We also realize that he's not quite 3 1/2, and that some kids take longer to potty train than others.
There are a few things that still disturb his sense of touch. Coats, for example. He has had tantrums every year when he has to start wearing coats again, ostensibly because he's not used to them. This year, we're finally past the fits and he just whines and tries to remove the offending apparel. Every day. This aversion includes the snazzy little corduroy sport coat my mother sent at Christmas, and raincoats. We're quite sure A will one day remember how to make zippers function (he used to do it all the time), but for now they effectively keep his jacket on. He also intensely dislikes his backpack for school. I'm pretty sure that the correct grammatical forms of "pure hatred" could be used interchangeably with "intense dislike" in the prior sentence. And every time we get new shoes for him, if they feel different on his feet he will cry and be very upset for a few days (whenever he has to wear them). It takes a few days for him to get used to them, and then he's fine.
A still doesn't like hats very much. He really doesn't like anything touching his head, as a general rule. Washing his hair and giving him a haircut are two events that are just TONS of fun for everyone involved. I have been sorely tempted to duct tape my son to the chair during the latter. I never will, of course, but it sure is fun to consider when in the throes of a particularly loud haircutting session. Just being honest! As humans we tend to "put our best face forward" and always say "fine" whenever anyone asks how we are, even if we're not. And most of us would never admit to harboring fantasies of, say, ditching the entire family and going to spend a week in [insert exotic location here or duct-taping our offspring to a chair. And then shake our heads, smile ruefully, and get back into the activity at hand, whether that be folding socks or cutting your kiddo's hair. But I admit that I do on occasion.... [remove soapbox]
Saturday, January 27, 2007
Obsessions
My A is currently obsessed with trucks, cars, anything that rolls. Balls, too. But he doesn't play with them as other kids might; rather, he lays down and focuses on the wheels rolling back and forth....back and forth....he can do this for hours on end. He also loves rolling things down the stairs, but that borders on normal boy behavior. I can remember both of my younger brothers turning our staircase into a racetrack on more than one occasion.
Doors are another fascination for him, and he has a compulsion to close any open door he finds. This means the pantry door, bathroom door, entertainment center doors, doors at church, doors in stores, doors on toys....you get the idea. If there isn't an open door around, A will pick one and open and close it over and over and over. While he may derive some sort of pleasure out of this activity, it drives the rest of us nuts. Including his baby sister. She's 10 months old now, and gets this hilarious expression of exasperation when A starts to mess with a door.
Music. Ah, music. My son has loved music even before he was born. He used to jump around inside me when we were at church, or listening to the radio in the car, or on the TV....he still loves music. His daddy is a musician, and we have a piano, violin, multiple guitars throughout the house. A has always been very careful with them, never bangs or pulls on the strings. He even tries to dance. A is usually a rather clumsy child, but when he dances, there is an ethereal grace to it. Very interesting to watch.
A also shows signs of being artistic. When he was still in his high chair, and he was finished eating his meal, he would take the remnants and arrange them on his tray. He'd stop, look at it for a minute, then gently prod one piece over a little bit. Stop and look again, until it was "just right". Then he was finished and wanted to get down. His creations were different each time, and he never just lined up everything. It was consistently arranged in the pleasing rule of thirds (a basic art principle taught in classes). He also loves to color, although he has some difficulties with the fine motor skills of holding the crayon. Finger painting is a huge winner, whether on his plate, on paper, or in the bath tub with some liquid soap colors.
Doors are another fascination for him, and he has a compulsion to close any open door he finds. This means the pantry door, bathroom door, entertainment center doors, doors at church, doors in stores, doors on toys....you get the idea. If there isn't an open door around, A will pick one and open and close it over and over and over. While he may derive some sort of pleasure out of this activity, it drives the rest of us nuts. Including his baby sister. She's 10 months old now, and gets this hilarious expression of exasperation when A starts to mess with a door.
Music. Ah, music. My son has loved music even before he was born. He used to jump around inside me when we were at church, or listening to the radio in the car, or on the TV....he still loves music. His daddy is a musician, and we have a piano, violin, multiple guitars throughout the house. A has always been very careful with them, never bangs or pulls on the strings. He even tries to dance. A is usually a rather clumsy child, but when he dances, there is an ethereal grace to it. Very interesting to watch.
A also shows signs of being artistic. When he was still in his high chair, and he was finished eating his meal, he would take the remnants and arrange them on his tray. He'd stop, look at it for a minute, then gently prod one piece over a little bit. Stop and look again, until it was "just right". Then he was finished and wanted to get down. His creations were different each time, and he never just lined up everything. It was consistently arranged in the pleasing rule of thirds (a basic art principle taught in classes). He also loves to color, although he has some difficulties with the fine motor skills of holding the crayon. Finger painting is a huge winner, whether on his plate, on paper, or in the bath tub with some liquid soap colors.
Friday, January 26, 2007
A Slant of Sun
Greetings and salutations all, welcome to my new endeavor: a blog. I think this will be the longest entry, as it is the introductory one. (Just to relieve you!) This title (A Slant of Sun) is the same as one of my favorite books on autism. My son, who just turned three, has been diagnosed with this bewildering condition. Part of the reason I'm typing this blog is for anyone else out there who is floundering after hearing news of a similar diagnosis of a loved one, to share my thoughts and viewpoints so you don't feel as lost out there. I did, the first few months after he was diagnosed. Another part of why I'm typing this blog is so that, in case we find something that works really well for us, we can share it with others and hopefully help someone else. There are so many variables and levels on the autistic spectrum, and no two kids are alike, which makes this very hard to treat. If there's something that works for us, we're going to share it.
My son was born early, about 2 and a half weeks. The sphincter linking his esophagus and stomach hadn't formed completely yet (so we were told) and my son had horrible reflux ~ as in, would launch the entire contents of his stomach (right down to his toes) across the room. After enduring 4 months of this, he finally stopped ~ but not after we had started propping him up in his car seat to sleep and measuring for distance if it was a particularly good hurl. (18 feet is the record). The latter may seem callous and disgusting, but it was a survival tactic. We had to find something funny or we were going to go crazy. He was not allergic to anything, we had that checked out first thing, so we just had to wait it out.
Oh, yes, and the screaming. If my son was awake, he was screaming ~ he screamed if you picked him up, and screamed even harder when you put him down. 24 hours a day. For 6 months. My husband, who was in the Army at the time, would leave the house at 5:00 a.m., drive 45 min to work, and return home around 8 p.m. four or five days a week, and we only had one car. I was literally going a little crazy, was depressed, and suicidal. There was no escape, no break from it; we moved 1000 miles away from the closest family one and a half months after my A-- was born, courtesy of Uncle Sam, and none of my neighbors were interested in getting to know a baby that screamed all the time. Nor could we get a babysitter. Because my husband's work schedule was not regular, he worked a lot of Sundays. We didn't find a good church home until A-- was 7 months old, and past the screaming hurdle. And I couldn't get out and try to walk with him, because we moved to Maryland in January and that was the year they had tons of snow and cold weather until about the end of April/beginning of May. We now know that his incessant screaming was because he was being sensorily bombarded and couldn't handle what the rest of us thrive in on a daily basis. Clothes, getting a bath, being held, anything triggered his supersensitive nerves.
And sounds. My son still freaks out if he hears a vacuum cleaner, hair dryer, lawn mower, weed eater ~ pretty much anything loud and/or high pitched will do it. I guess that explains why vacuuming under his crib didn't help calm him down, as was suggested in a colic resource....
Once we got over the screaming hump, things got better. We met some friends. I got a part-time job. My husband and I thought he was progressing pretty normally until he reached his second birthday. He said "please" and "thank you", asked for "apple juice". He knew all of his letters in and out of sequence, could pick them out of words, and he could also count to 20 and backwards from 5. He also knew his colors, shapes. I noticed that he did a weird thing with his hands, touching his index fingers while his hands were rigid ~ and it freaked my neighbor out. He would also shake his head back and forth or spin in circles for hours. My neighbor's daughter was almost exactly one month older than my son, so they "played" while she and I talked. Extremely bright, that little girl was lightyears ahead of my kiddo in every regard. I know you aren't supposed to compare your kids with others, so it didn't bother me too much....but then I noticed what most other kids his age could do that he just couldn't. And this was at the park, at church, all sorts of places. The older he got, the more apparent it became to me that something might be a little off. He really didn't play with other kids, they were more like....walls, or decoration. He knew they were there, and would work around them, but he never engaged with them, or me either for that matter. From the age of six months until about 18 months, A-- loved for me to read to him. Then one day he just quit liking it, and still doesn't enjoy it. He quit speaking all together, and starting doing animal grunts. He still said his letters and numbers, often counting while spinning around in circles, but all other words ceased. A-- would also space out regularly, and nothing would bring him back, not even touching his arm. These little episodes were infrequent at this point, and only a few seconds at a time.
His pediatrician wasn't worried, since our son had met most of his milestones ~ but adopted a "wait and see" policy. There was something niggling at me, but my husband said he was just fine. Kids develop at their own rates, and our neighbor's daughter is a genius child; no sense in comparing the two. Also, my son's cousin didn't begin speaking until after she was 3 years old (and now she's 5 and won't shut up!).
In the six months after my son turned two, we: 1) moved to the town my husband works in, because the company I worked for closed nationwide 2) I gave birth to A's sister 3) we were involved in a serious car accident six weeks after K-- was born (both kids were fine, not a scratch on them). So there was a lot going on that could have delayed some things.....so we still were "waiting and seeing". His grunting and screaming were becoming more pronounced, and his "spacing" episodes were happening multiple times a day.
My parents came to visit at the beginning of June in 2006. During their stay, they noted A's behaviors and expressed some concerns. My husband and I had a long talk, and we finally agreed to take A-- in for an appointment at the military clinic here in our new town. This was at the very end of June. We were sent to Bethesda (2 hours away) and after a battery of tests at the Bethesda Naval Medical Center, both blood and observation, A-- was diagnosed with full spectrum infantile autism syndrome on July 17th, 2006.
We reeled mentally and physically for a while, even though both my husband and I were starting to suspect just that diagnosis, through personal research on the internet. Thinking it might be a possibility, and hearing the words confirming it are two different animals. I cried. I was overwhelmed, and didn't know where to begin. The team who diagnosed him handed us some papers, smiled in sympathy, and herded us out the door for their next case. We haven't seen them again, their only job is to diagnose, not to treat. We were lost, floundering for anything that might be beneficial to our son. I felt guilty for a while, like I hadn't done something right or taken him in sooner so he could be treated sooner....and after all that was exhausted (and it took a while), in its place is grim resolution to do the best we can for him and bring him back into our world. And keep him here. I know that there was nothing I did to cause this and nothing I could have done to prevent his autism, either. It just is. And my son was the same after his diagnosis as he was before it. He's still my A--. The diagnosis is just a rudder, to aim us in the right direction to help him learn how to be functional in our world.
Further testing indicated that he might be having small seizures (hence the spacing out). Between our initial neurology consult at the beginning of August, and A's sedated EEG six weeks later ~ his episodes pretty much just stopped. Our church family, and our related families have all been praying for him, we know, and this is the only answer we have. The doctor was stunned and has absolutely no explanation scientifically as to why the seizures could have ceased that dramatically in that amount of time. He had fully intended to counsel us on epileptic drugs to put our son on. He said there was no reason to put A-- on anything, provided he continued to do so well. A-- is still not on any drugs.
Our son was also given a prescription for ABA (Applied Behavioral Analysis) therapy for 2 hours daily, for 52 weeks. This is a wonderful thing, if you can find it and afford it. Many insurance companies will not cover this treatment, or will cover a fraction of it. The cheapest we could find was for $100 an hour; at two hours a day, for 52 weeks.... that adds up quickly. We were still going to be liable for over half the costs. Also, there aren't too many people certified to conduct this type of therapy. In our area, in Maryland, we have one of the better concentrations of ABA certified therapists....and the shortest waiting list is 10 families deep, and hasn't moved since last May. Basically, the list only changes if someone moves, or dies. We were given the option of going to Washington, D.C. every day for 2 hours a day at the Walter Reed medical complex. But, everything is being shifted over to Bethesda Medical Hospital so they can close the much outdated Walter Reed. And that therapy isn't offered at either location. Or, we could have driven down to Richmond, VA every day, which is 6 hours away from us. Not even an option for us financially, just from gas, but I tried to find a way. I did everything I could think of, and then realized that being willing to move heaven and earth was just fine ~ having the ability to do so is something entirely different, and I'd done all I could do at that point.
So we waited.....and waited some more.....we'd put our names on the lists and there wasn't much else to do but wait. We also approached Maryland Infants and Toddlers about starting Head Start. Since our son was turning three in November, they delayed him until after his birthday so he could attend special preschool in the public school system (the Inf and Todd program is only for kids from birth to age three). It was agreed upon that starting him on a program for a month and a half, then switching him up again was probably not the best thing to do. A-- hates any major changes in his routine. An easy way to ellicit a tantrum is to alter his "normal" schedule, including what time he eats breakfast. It's always at 8 a.m. Always. Earlier than that, he won't eat it. If we go past 8, he immediately begins yelling and grunting.
Just before Christmas, our son was enrolled in the public school system here, in a special preschool program that incorporates occupational therapy and speech therapy as part of their curriculum. And it's free (Thank God). A-- had to go through more tests to assess his abilities, and he finally started on January 16, 2007. He has done fairly well, some whining but no tantrums or crying. He watches everything, but hasn't joined in yet. Due to Martin Luther King day, there were only four days of school last week; this week, the kids were out of school Monday and Tuesday for teacher workshop days. Next week will be the first "normal" week for him, and we are anxious to see how he does.
And just today, we received in the mail authorization from our health insurance for A-- to get occupational therapy twice a week for the next year at a local physical therapy clinic! His school does fulfill some of the ABA requirements, but there are still some individual areas that are lacking. Our insurance has decided that they will cover this particular need. A-- starts next Thursday!
My son was born early, about 2 and a half weeks. The sphincter linking his esophagus and stomach hadn't formed completely yet (so we were told) and my son had horrible reflux ~ as in, would launch the entire contents of his stomach (right down to his toes) across the room. After enduring 4 months of this, he finally stopped ~ but not after we had started propping him up in his car seat to sleep and measuring for distance if it was a particularly good hurl. (18 feet is the record). The latter may seem callous and disgusting, but it was a survival tactic. We had to find something funny or we were going to go crazy. He was not allergic to anything, we had that checked out first thing, so we just had to wait it out.
Oh, yes, and the screaming. If my son was awake, he was screaming ~ he screamed if you picked him up, and screamed even harder when you put him down. 24 hours a day. For 6 months. My husband, who was in the Army at the time, would leave the house at 5:00 a.m., drive 45 min to work, and return home around 8 p.m. four or five days a week, and we only had one car. I was literally going a little crazy, was depressed, and suicidal. There was no escape, no break from it; we moved 1000 miles away from the closest family one and a half months after my A-- was born, courtesy of Uncle Sam, and none of my neighbors were interested in getting to know a baby that screamed all the time. Nor could we get a babysitter. Because my husband's work schedule was not regular, he worked a lot of Sundays. We didn't find a good church home until A-- was 7 months old, and past the screaming hurdle. And I couldn't get out and try to walk with him, because we moved to Maryland in January and that was the year they had tons of snow and cold weather until about the end of April/beginning of May. We now know that his incessant screaming was because he was being sensorily bombarded and couldn't handle what the rest of us thrive in on a daily basis. Clothes, getting a bath, being held, anything triggered his supersensitive nerves.
And sounds. My son still freaks out if he hears a vacuum cleaner, hair dryer, lawn mower, weed eater ~ pretty much anything loud and/or high pitched will do it. I guess that explains why vacuuming under his crib didn't help calm him down, as was suggested in a colic resource....
Once we got over the screaming hump, things got better. We met some friends. I got a part-time job. My husband and I thought he was progressing pretty normally until he reached his second birthday. He said "please" and "thank you", asked for "apple juice". He knew all of his letters in and out of sequence, could pick them out of words, and he could also count to 20 and backwards from 5. He also knew his colors, shapes. I noticed that he did a weird thing with his hands, touching his index fingers while his hands were rigid ~ and it freaked my neighbor out. He would also shake his head back and forth or spin in circles for hours. My neighbor's daughter was almost exactly one month older than my son, so they "played" while she and I talked. Extremely bright, that little girl was lightyears ahead of my kiddo in every regard. I know you aren't supposed to compare your kids with others, so it didn't bother me too much....but then I noticed what most other kids his age could do that he just couldn't. And this was at the park, at church, all sorts of places. The older he got, the more apparent it became to me that something might be a little off. He really didn't play with other kids, they were more like....walls, or decoration. He knew they were there, and would work around them, but he never engaged with them, or me either for that matter. From the age of six months until about 18 months, A-- loved for me to read to him. Then one day he just quit liking it, and still doesn't enjoy it. He quit speaking all together, and starting doing animal grunts. He still said his letters and numbers, often counting while spinning around in circles, but all other words ceased. A-- would also space out regularly, and nothing would bring him back, not even touching his arm. These little episodes were infrequent at this point, and only a few seconds at a time.
His pediatrician wasn't worried, since our son had met most of his milestones ~ but adopted a "wait and see" policy. There was something niggling at me, but my husband said he was just fine. Kids develop at their own rates, and our neighbor's daughter is a genius child; no sense in comparing the two. Also, my son's cousin didn't begin speaking until after she was 3 years old (and now she's 5 and won't shut up!).
In the six months after my son turned two, we: 1) moved to the town my husband works in, because the company I worked for closed nationwide 2) I gave birth to A's sister 3) we were involved in a serious car accident six weeks after K-- was born (both kids were fine, not a scratch on them). So there was a lot going on that could have delayed some things.....so we still were "waiting and seeing". His grunting and screaming were becoming more pronounced, and his "spacing" episodes were happening multiple times a day.
My parents came to visit at the beginning of June in 2006. During their stay, they noted A's behaviors and expressed some concerns. My husband and I had a long talk, and we finally agreed to take A-- in for an appointment at the military clinic here in our new town. This was at the very end of June. We were sent to Bethesda (2 hours away) and after a battery of tests at the Bethesda Naval Medical Center, both blood and observation, A-- was diagnosed with full spectrum infantile autism syndrome on July 17th, 2006.
We reeled mentally and physically for a while, even though both my husband and I were starting to suspect just that diagnosis, through personal research on the internet. Thinking it might be a possibility, and hearing the words confirming it are two different animals. I cried. I was overwhelmed, and didn't know where to begin. The team who diagnosed him handed us some papers, smiled in sympathy, and herded us out the door for their next case. We haven't seen them again, their only job is to diagnose, not to treat. We were lost, floundering for anything that might be beneficial to our son. I felt guilty for a while, like I hadn't done something right or taken him in sooner so he could be treated sooner....and after all that was exhausted (and it took a while), in its place is grim resolution to do the best we can for him and bring him back into our world. And keep him here. I know that there was nothing I did to cause this and nothing I could have done to prevent his autism, either. It just is. And my son was the same after his diagnosis as he was before it. He's still my A--. The diagnosis is just a rudder, to aim us in the right direction to help him learn how to be functional in our world.
Further testing indicated that he might be having small seizures (hence the spacing out). Between our initial neurology consult at the beginning of August, and A's sedated EEG six weeks later ~ his episodes pretty much just stopped. Our church family, and our related families have all been praying for him, we know, and this is the only answer we have. The doctor was stunned and has absolutely no explanation scientifically as to why the seizures could have ceased that dramatically in that amount of time. He had fully intended to counsel us on epileptic drugs to put our son on. He said there was no reason to put A-- on anything, provided he continued to do so well. A-- is still not on any drugs.
Our son was also given a prescription for ABA (Applied Behavioral Analysis) therapy for 2 hours daily, for 52 weeks. This is a wonderful thing, if you can find it and afford it. Many insurance companies will not cover this treatment, or will cover a fraction of it. The cheapest we could find was for $100 an hour; at two hours a day, for 52 weeks.... that adds up quickly. We were still going to be liable for over half the costs. Also, there aren't too many people certified to conduct this type of therapy. In our area, in Maryland, we have one of the better concentrations of ABA certified therapists....and the shortest waiting list is 10 families deep, and hasn't moved since last May. Basically, the list only changes if someone moves, or dies. We were given the option of going to Washington, D.C. every day for 2 hours a day at the Walter Reed medical complex. But, everything is being shifted over to Bethesda Medical Hospital so they can close the much outdated Walter Reed. And that therapy isn't offered at either location. Or, we could have driven down to Richmond, VA every day, which is 6 hours away from us. Not even an option for us financially, just from gas, but I tried to find a way. I did everything I could think of, and then realized that being willing to move heaven and earth was just fine ~ having the ability to do so is something entirely different, and I'd done all I could do at that point.
So we waited.....and waited some more.....we'd put our names on the lists and there wasn't much else to do but wait. We also approached Maryland Infants and Toddlers about starting Head Start. Since our son was turning three in November, they delayed him until after his birthday so he could attend special preschool in the public school system (the Inf and Todd program is only for kids from birth to age three). It was agreed upon that starting him on a program for a month and a half, then switching him up again was probably not the best thing to do. A-- hates any major changes in his routine. An easy way to ellicit a tantrum is to alter his "normal" schedule, including what time he eats breakfast. It's always at 8 a.m. Always. Earlier than that, he won't eat it. If we go past 8, he immediately begins yelling and grunting.
Just before Christmas, our son was enrolled in the public school system here, in a special preschool program that incorporates occupational therapy and speech therapy as part of their curriculum. And it's free (Thank God). A-- had to go through more tests to assess his abilities, and he finally started on January 16, 2007. He has done fairly well, some whining but no tantrums or crying. He watches everything, but hasn't joined in yet. Due to Martin Luther King day, there were only four days of school last week; this week, the kids were out of school Monday and Tuesday for teacher workshop days. Next week will be the first "normal" week for him, and we are anxious to see how he does.
And just today, we received in the mail authorization from our health insurance for A-- to get occupational therapy twice a week for the next year at a local physical therapy clinic! His school does fulfill some of the ABA requirements, but there are still some individual areas that are lacking. Our insurance has decided that they will cover this particular need. A-- starts next Thursday!
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