Both my boyz are going to be tall. That has never really been in doubt. With hubby just under 6'1" and myself at 5'8" and both of the boyz over 9 lbs at birth, we just knew they were going to be big.
Now Joe has hopefully stopped growing at 6'3" (but maybe not since he went through his growth spurt late) and when I took Alan to the doctor earlier this week he is 5'7". So within the next year I will be the shortest one in the family. (I have been the lightest weight for over a year, but that is another story!)
And while their physical growth has been fascinating for mom to watch, it is their emotional maturity that is the subject of today's blog post.
The boyz have both AMAZED me just this past week.
First off, there's Joe. I took him to the psychiatrist yesterday and he told the doctor that although he frequently had trouble understanding what people meant when they said or did certain things, most of the time I could explain their motivations to him. Now maybe that doesn't sound like much to the outsider, but that is huge around here.
Joe is one stubborn kid. He is always convinced he is right even when you clearly prove him wrong. As the parent from whom he inherited most of his stubbornness, I can vouch for this! We usually butt heads on almost every topic under the sun. DH is forever telling me to "stop arguing with him!" Most of the time the truth is subjective so neither of us is necessarily right or wrong but when the truth is pretty obvious, I admit to digging in my heals. I am usually better at interpreting behavior from body language or circumstances than Joe but to have him acknowledge that fact unprompted was hugely gratifying. I think most of us have a hard time expressing when we are wrong or deficient in some way, but it does help us grow.
He also continues to do well in his job and likes it!! He also started work again at the weekend camp and was remarkably dedicated about getting all his paperwork submitted for re-employment. Proud momma moment here! He is trying to save money to buy one of our cars so he has stopped going out to lunch every day he can. This is also rather mature of him. I'm thinking we can release guardianship for him very soon which makes me incredibly happy.
And then there is Alan.
"Wow" doesn't begin to cover it. He has been back in school almost three weeks and he hasn't had one "bad" day at school. There have been "incidents" that they've reported (he didn't want to participate in PE but eventually complied, he couldn't get a soda when out in the community and was very disappointed but dealt with it, I forgot to pack a snack one day and the only things they had available didn't appeal to him, etc.) but nothing major. They have even told me repeatedly that he is a "role model" for other students. DH read the note that came home yesterday and said, "Does he have an identical twin around here that you've been hiding from me?"
And at home, he has been good too.
He doesn't have many chores around the house mainly because it is too hard to teach them to him. But we've been trying to come up with more. We have been having him take the kitchen trash out to the garbage after we tie up the bag but we always had to tell him to do this. Then last week I left a bag out (both boyz were in different areas of the house) and Alan came into the kitchen first and took the bag out to the garbage without being asked. The other thing we have been having him do is sweep the floor after he is done eating -- especially when he has popcorn and leaves little bits all over the floor -- but it has always been a struggle with lots of vocalizations on his part. This morning he finished breakfast and went out to get the broom without being asked.
Who is this kid? Did I have twins and not realize it?
While this is a lot more of a bragging post than I typically write, I did want to let other parents know that it DOES get better. Joe grew up a lot during high school but he continues to grow now as a young adult. Alan is just starting to go through the high school maturity and it gives me so much hope. I still know that he will never be able to live independently and that saddens me. But when you spend so much of your life in fear of what will happen when your autistic, minimally verbal, occasionally violent child is bigger and stronger than you, it is very nice to know that he might not have to go into an institution but can at least stay here with us.
My little boyz are growing up. What will I write about now? I guess my minis ...
Showing posts with label baby. Show all posts
Showing posts with label baby. Show all posts
Thursday, August 28, 2014
Thursday, June 12, 2014
Writer's block
I have a really bad case of creativity block.
Some of this is certainly the fact that summer is here. I have never been a big fan of warm weather. Alan is home more and DH is currently on a business trip. Sigh.
I haven't done much recently with my minis.
I've hardly even cooked much in my new kitchen.
I haven't written anything recently on this blog of which I am particularly happy. Father's Day is coming up and I haven't even written a good tribute to DH.
So, since today is Thursday, I will take advantage of TBT and re-run my tribute from last year which is probably one of my all time favorite posts anyway. So Happy Father's Day, DH!
As regular readers know, I do not refer to my hubby by name, merely as DH. Lest anyone be confused that does stand for Dear Husband NOT D*%# Husband.
DH and I met some 25 years ago and it wasn't exactly love at first sight. We both thought the other had some goofy traits -- I was concerned about silly things like whether or not his clothes matched (they didn't) and he thought I needed to grow up (I did). Obviously we did eventually reconcile these little problems.
So fast forward some seven years to Joe's birth. I know that DH and I were terrified. I would be hard pressed to say who was more so. We were both the youngest in our family and although we both had nieces, we really had very limited experience with kids in general and babies in particular.
We both have a vivid memory of leaving the hospital, getting out to the car with Joe and wondering how the heck did we get the car seat in the car?!?!?! I am positive that he was not properly restrained for that first short drive. Then there were diapers. I think I had changed a grand total of two diapers before Joe was born and I'm pretty sure DH hadn't even changed that many.
I'm sure
anyone who has ever cared for a newborn remembers that dreaded
"transition" diaper. That's the one with the consistency, color and
smell of rancid tar. We got Joe's at about 3 in the morning on his
first night home. While trying to clean it up (which took two of us) we
were both christened along with the wall and floor of Joe's room -- ah,
the special joys of little boys. I was in so much pain from trying to breastfeed and a difficult birth that all I wanted to do was cry but DH just laughed which made me laugh and like so many things that would come later, he helped me get through.
Joe
wasn't always an easy baby. He would make himself go rigid and thrash
like there was no tomorrow, but like many with autism he was the
world's cutest toddler. However, he only had about 10 words until he was
almost 3 when we started our own version of ABA so he was definitely a
challenge!
DH was always fantastic about coming with me to doctor after doctor and school meeting after school meeting. I remember when we had home ABA with Joe and DH would make it to most of the team meetings. Our ABA coordinator told us she didn't even know what most of the dads looked like and here was DH sitting in and contributing in most of the meetings.
He
would take Joe to the pool, the playground and even built a swing-set
for him. (And 14 years later, that swing-set is still in use by the
younger child.) But Dad and Joe are still pals and play tennis, chess
and go for bike rides.
But I think what I like best about DH as a father is that he was never upset about the fact that Joe didn't play conventional sports. We tried both t-ball and soccer when he was younger and they were complete disasters. But it was never an issue. I know so many guys that want to live vicariously through their male off-spring and DH was never that way. He happily took Joe to gymnastics and later piano and bowling. He taught him how to play tennis and we both taught him to ride a bike (with DH doing more of the running than yours truly!)
He also liked just relaxing and being silly with Joe.
Although he had a little denial before Joe was diagnosed he probably had less than me with Alan. I was just convinced that lightning did NOT strike twice. Alan was such a different baby than Joe -- cuddly, amazing eye contact, lots more babbling -- that I did not think he could possibly have autism.
But once again, with DH's fantastic sense of humor and help, we got through all the sleepless nights, the poop smearing, the B-12 shots in Alan's butt while he slept, the bizarre climbing, the endless "Alan-proofing" of the basement, etc.
The poor guy even has allergies but when Joe wanted a cat, DH said sure.
And DH still has some of the ickier jobs with the boys. He usually ends up taking Alan to the sedation dentist because it takes two males (DH and the doc) along with three nurses to hold him down and give him the initial shot.
And through all this, he remains my best friend and the person most likely to make me laugh. Overall I couldn't ask for a better husband or Dad to my boyz!
Love you, babe!
Some of this is certainly the fact that summer is here. I have never been a big fan of warm weather. Alan is home more and DH is currently on a business trip. Sigh.
I haven't done much recently with my minis.
I've hardly even cooked much in my new kitchen.
I haven't written anything recently on this blog of which I am particularly happy. Father's Day is coming up and I haven't even written a good tribute to DH.
So, since today is Thursday, I will take advantage of TBT and re-run my tribute from last year which is probably one of my all time favorite posts anyway. So Happy Father's Day, DH!
Happy Father's Day, DH!
 |
| The young and the clueless |
DH and I met some 25 years ago and it wasn't exactly love at first sight. We both thought the other had some goofy traits -- I was concerned about silly things like whether or not his clothes matched (they didn't) and he thought I needed to grow up (I did). Obviously we did eventually reconcile these little problems.
So fast forward some seven years to Joe's birth. I know that DH and I were terrified. I would be hard pressed to say who was more so. We were both the youngest in our family and although we both had nieces, we really had very limited experience with kids in general and babies in particular.
We both have a vivid memory of leaving the hospital, getting out to the car with Joe and wondering how the heck did we get the car seat in the car?!?!?! I am positive that he was not properly restrained for that first short drive. Then there were diapers. I think I had changed a grand total of two diapers before Joe was born and I'm pretty sure DH hadn't even changed that many.
Joe
wasn't always an easy baby. He would make himself go rigid and thrash
like there was no tomorrow, but like many with autism he was the
world's cutest toddler. However, he only had about 10 words until he was
almost 3 when we started our own version of ABA so he was definitely a
challenge! DH was always fantastic about coming with me to doctor after doctor and school meeting after school meeting. I remember when we had home ABA with Joe and DH would make it to most of the team meetings. Our ABA coordinator told us she didn't even know what most of the dads looked like and here was DH sitting in and contributing in most of the meetings.
He
would take Joe to the pool, the playground and even built a swing-set
for him. (And 14 years later, that swing-set is still in use by the
younger child.) But Dad and Joe are still pals and play tennis, chess
and go for bike rides.But I think what I like best about DH as a father is that he was never upset about the fact that Joe didn't play conventional sports. We tried both t-ball and soccer when he was younger and they were complete disasters. But it was never an issue. I know so many guys that want to live vicariously through their male off-spring and DH was never that way. He happily took Joe to gymnastics and later piano and bowling. He taught him how to play tennis and we both taught him to ride a bike (with DH doing more of the running than yours truly!)
He also liked just relaxing and being silly with Joe.
Although he had a little denial before Joe was diagnosed he probably had less than me with Alan. I was just convinced that lightning did NOT strike twice. Alan was such a different baby than Joe -- cuddly, amazing eye contact, lots more babbling -- that I did not think he could possibly have autism.
But once again, with DH's fantastic sense of humor and help, we got through all the sleepless nights, the poop smearing, the B-12 shots in Alan's butt while he slept, the bizarre climbing, the endless "Alan-proofing" of the basement, etc.
The poor guy even has allergies but when Joe wanted a cat, DH said sure.
And DH still has some of the ickier jobs with the boys. He usually ends up taking Alan to the sedation dentist because it takes two males (DH and the doc) along with three nurses to hold him down and give him the initial shot.
And through all this, he remains my best friend and the person most likely to make me laugh. Overall I couldn't ask for a better husband or Dad to my boyz!
Love you, babe!
Thursday, June 5, 2014
TBT - Do ya feel lucky?
Welcome to Julie's Boyz' version of Throw Back Thursday -- Blog Style (TBT-BS: got to love that acronym!) I am taking Thursdays to rerun some of my older blog posts. This one originally ran on March 27, 2013.
 |
| An assortment of "free time" pics for Alan's iPad from March 2013 |
Do ya feel lucky?
On our honeymoon, DH and I went to Bahamas which is a big gambling place. We both came very quickly to the twin conclusions that we were not particularly lucky and we really hated losing our hard earned money in a game of chance.
When our first baby was born, people were still throwing around numbers like 1 in 10,000 for autism so our knowledge of autism was next to nil. Of course to add insult to injury, Rain Man had only come out a few years earlier so what knowledge we had was skewed as well.
Of course by the time Joe was diagnosed they were using numbers like 1 in 5000 but still I had several people assure me that it didn't run in families. If I knew then what I know now, I would probably have stopped there and I also think I would have been a better mother.
I was reading Stuart Duncan yesterday and while I normally love his blog, yesterday's post just grated on me. In Don't fear autism and certainly do not fear your own child he says basically that parents are not having children because they fear autism. He says we should instead reassure prospective parents.
In the case of subsequent children once one is diagnosed, personally I think this a good thing. When you are at a high risk for something you should be allowed to consider whether that risk is personally worth it.
When this generation of autistic children reaches adulthood, they will put a hell of an additional strain on the economy since most of them will not be functioning members of society. If the 1 in 50 number is truly accurate, then at least 1 child in 50 will also need to have a career that focuses on the care of autistic adults. That just boggles the mind.
Yes it is very possible (98% possible) that you will have a neurotypical child. But a 2% risk to forever alter your life requires very careful consideration.
Could you be a good parent to a special needs child?
Maybe these prospective parents know they are too selfish to give up their whole lifestyle forever if their child is severe. Maybe mom and dad are both very into their careers and know that they could not make all the meetings that would be required. Maybe they are struggling financially and have heard how costly it is to have a child with special needs. Maybe their marriage is already rocky and the idea of raising a special needs child single-handed is daunting.
That is a choice. Maybe they are just not gamblers.
Monday, October 28, 2013
Thank goodness for boyz ... except today!
I love my boyz beyond belief -- their autism, not so much -- but just the fact that they are male is awesome! Most days.
Most people have an idea before they have children of what boyz or girls are "like" and I am no exception. I clearly remembering wanting no more than one boy. I had one brother growing up and several of my cousins and friends had similar family arrangements and they worked pretty smoothly, I thought.
I knew I did not want multiple boyz. My husband only has a brother and my brother-in-law has two brothers and no sisters and a family we were close to growing up had three boyz and one girl and the stories and memories terrified me.
DH loves to tell the story of his brother giving pointers to the neighborhood boy on the best way to beat up DH. Then there are the stories of the summer that DH finally caught up in size to his older brother. World War III is usually used as the analogy and all I can think of is my poor, sainted mother-in-law -- but that is another whole blog post! I remember going over to the house with the three boyz while I was growing up and it totally morphed my brother. He was sweet and funny most of the time but we'd go over to their house and he would get into fart contests with the other boyz and all that gross "boy" stuff. No way. I had decided that was NOT for me.
But when we started thinking about a family, all I could think about was having a boy. I had four nieces and no nephews and my brother had died shortly before my wedding and all I could think about was a baby boy. I wanted a boy! Everyone always says "you will love the baby no matter what the gender" but I knew I really wanted that boy. Boyz (plural) still scared me and if I knew my second child was going to be a boy, I probably would have preferred that my first be a girl, but since nothing in life is certain, I just wanted that boy.
Lo and behold, Joe was born and there was much rejoicing. Both sets of grandparents and mom and dad were all thrilled.
Joe was absolutely the most beautiful baby EVER (and I had numerous strangers come up to me in public to reinforce that belief) but he wasn't always the easiest baby. It took me a long time to decide to have a second baby. DH wanted them closer together, but I was thinking 10 years apart was about right! The thought of two boyz no longer scared me. I just wanted a "typical" child. Ha! Does karma have a heck of a sense of humor, or what?!?!? At least Alan was a much easier baby!!
So back to why I am thankful for two boyz ...
1. Boyz are tough. I have a dear friend that has a daughter Joe's age. They both got their braces at similar times. Sweet girl would be in the nurse's office several times a week for Tylenol. Joe never asked for pain killers. In two and half years. Tough kid. Alan cut his head open and I found out when I found the bloody washcloth he used to try to clean himself up. Even tougher kid. Thank goodness for boyz.
2. Boyz consider shopping to be a chore which is also how I look at it. I never have to take them shopping to cheer them up! Thank goodness for boyz.
3. Boyz' toys are much better than those specifically "for girls". I hate the color pink and find changing a Barbie's clothes or matching her accessories to be boring. But building a railroad track? That is fun!! Thank goodness for boyz.
4. Boyz' books are better. I'd much rather read Percy Jackson or even How to Train your Dragon than The Twilight books any day!! Thank goodness for boyz.
5. Boyz are usually lower upkeep. They will never want their hair highlighted, a pedicure or the latest handbag. A suit for prom is a lot easier than finding the "right" dress -- although it might cost as much. In general their clothes cover more surface area, too!! Car insurance is more for boyz, but a wedding is a lot more. Thank goodness for boyz.
6. Drama is definitely lower with boyz.
In case you missed all the clues, I'll spell it out. I am not a "girlie" girl. Despite my obsession with miniatures, I don't care for most things "feminine". I am an engineer by degree. I love jeans and t-shirts and my boyz. So why is today different?
Today is the day I cleaned the bathrooms. Let's face it -- boyz miss. A lot. An awful lot. Yuck.
Most people have an idea before they have children of what boyz or girls are "like" and I am no exception. I clearly remembering wanting no more than one boy. I had one brother growing up and several of my cousins and friends had similar family arrangements and they worked pretty smoothly, I thought.I knew I did not want multiple boyz. My husband only has a brother and my brother-in-law has two brothers and no sisters and a family we were close to growing up had three boyz and one girl and the stories and memories terrified me.
DH loves to tell the story of his brother giving pointers to the neighborhood boy on the best way to beat up DH. Then there are the stories of the summer that DH finally caught up in size to his older brother. World War III is usually used as the analogy and all I can think of is my poor, sainted mother-in-law -- but that is another whole blog post! I remember going over to the house with the three boyz while I was growing up and it totally morphed my brother. He was sweet and funny most of the time but we'd go over to their house and he would get into fart contests with the other boyz and all that gross "boy" stuff. No way. I had decided that was NOT for me.
But when we started thinking about a family, all I could think about was having a boy. I had four nieces and no nephews and my brother had died shortly before my wedding and all I could think about was a baby boy. I wanted a boy! Everyone always says "you will love the baby no matter what the gender" but I knew I really wanted that boy. Boyz (plural) still scared me and if I knew my second child was going to be a boy, I probably would have preferred that my first be a girl, but since nothing in life is certain, I just wanted that boy.Lo and behold, Joe was born and there was much rejoicing. Both sets of grandparents and mom and dad were all thrilled.
Joe was absolutely the most beautiful baby EVER (and I had numerous strangers come up to me in public to reinforce that belief) but he wasn't always the easiest baby. It took me a long time to decide to have a second baby. DH wanted them closer together, but I was thinking 10 years apart was about right! The thought of two boyz no longer scared me. I just wanted a "typical" child. Ha! Does karma have a heck of a sense of humor, or what?!?!? At least Alan was a much easier baby!!
So back to why I am thankful for two boyz ...
1. Boyz are tough. I have a dear friend that has a daughter Joe's age. They both got their braces at similar times. Sweet girl would be in the nurse's office several times a week for Tylenol. Joe never asked for pain killers. In two and half years. Tough kid. Alan cut his head open and I found out when I found the bloody washcloth he used to try to clean himself up. Even tougher kid. Thank goodness for boyz.
2. Boyz consider shopping to be a chore which is also how I look at it. I never have to take them shopping to cheer them up! Thank goodness for boyz.
3. Boyz' toys are much better than those specifically "for girls". I hate the color pink and find changing a Barbie's clothes or matching her accessories to be boring. But building a railroad track? That is fun!! Thank goodness for boyz.
4. Boyz' books are better. I'd much rather read Percy Jackson or even How to Train your Dragon than The Twilight books any day!! Thank goodness for boyz.
5. Boyz are usually lower upkeep. They will never want their hair highlighted, a pedicure or the latest handbag. A suit for prom is a lot easier than finding the "right" dress -- although it might cost as much. In general their clothes cover more surface area, too!! Car insurance is more for boyz, but a wedding is a lot more. Thank goodness for boyz.
6. Drama is definitely lower with boyz.
In case you missed all the clues, I'll spell it out. I am not a "girlie" girl. Despite my obsession with miniatures, I don't care for most things "feminine". I am an engineer by degree. I love jeans and t-shirts and my boyz. So why is today different?
Today is the day I cleaned the bathrooms. Let's face it -- boyz miss. A lot. An awful lot. Yuck.
Tuesday, September 10, 2013
I never wanted autism
I never wanted autism.
There I've said it.
Now I've probably pissed off any adult autistics that actually read my blog and possibly some of the parents.
Still it is true. When I was pregnant I didn't think "I hope my older son has a hard time making friends. I really hope my younger son still talks in single words at 15 years old. I want a family that can't go over to the grandparents' houses because the younger one cannot follow simple rules. I want to spend every family gathering taking turns with DH sitting outside and watching the younger son climb trees. I want to still be explaining basic idioms to my 18 year old. I want to stop taking family vacations when Alan starts having meltdowns on the beach. I want to stop certain fun family traditions because my 14 year old won't go out in the dark."
Does anyone think these things?
But as soon as I say "I hate autism" people jump all over me.
I really find it hard to believe that anyone wants this life. Don't get me wrong -- if they ever would find a cure, I would not force ANYONE to take it. I would discuss the options with Joe at length. I think he would chose to take it, but if he said "no" that would be that. Of course so much would depend on side effects that even discussing the possibility is sort of foolish.
But I get so frustrated by the "neuro-diversity" crowd that thinks we do not need a cure. Maybe they don't. But I do. I want to unlock the mystery inside of Alan's brain. He is so cuddly and affectionate and has such an infectious giggle but he also has a blood curdling shriek that I don't understand. I try. I come up with all sorts of interpretations, but I just do not know what he wants some days.
Trust me, I get that life isn't fair. DH and I regularly joke about
that. Most of the time, I laugh about our life. After all, it is
inherently funny to watch some of Alan's climbing activities. But when
he is wrecking our house and trying to climb on the electrical fixtures
and the heater because we aren't letting him outside to climb, it is a
little less funny. When he was going through his "poop smearing" phase and we were cleaning his room at least every 24 hours, that was definitely less funny.
I am terrified quite regularly when I think of the future. I have a child that will need life long care. What happens when I am not around to provide it? My older son cannot care for my younger one. Both DH and I are the youngest in our respective families. Th
at means all aunts and uncles are older than us. What happens when Alan is a 30 year old adult and everyone around him is 60+? He can already overpower me and he is still (marginally) smaller than me.
When I said that Kelli Stapleton did the wrong thing but I wanted to understand it, I was criticized. Someone said that anyone that thought like that didn't want an autistic child. That in fact, they wanted a neuro-typical kid. Um, yes. Actually I do want a neuro-typical child. Two of them would be nice. I love my boys with all my heart and soul, but I don't want them to have all the struggles they do. If some people believe this makes me a bad parent, then so be it.
I've never claimed to be perfect. Far from it, as a matter of fact! The popular expression is "love the sinner, hate the sin." Well, I love my autistic kids but I hate their autism. That is just the way it is.
There I've said it.
Now I've probably pissed off any adult autistics that actually read my blog and possibly some of the parents.
Still it is true. When I was pregnant I didn't think "I hope my older son has a hard time making friends. I really hope my younger son still talks in single words at 15 years old. I want a family that can't go over to the grandparents' houses because the younger one cannot follow simple rules. I want to spend every family gathering taking turns with DH sitting outside and watching the younger son climb trees. I want to still be explaining basic idioms to my 18 year old. I want to stop taking family vacations when Alan starts having meltdowns on the beach. I want to stop certain fun family traditions because my 14 year old won't go out in the dark."
Does anyone think these things?
But as soon as I say "I hate autism" people jump all over me.
I really find it hard to believe that anyone wants this life. Don't get me wrong -- if they ever would find a cure, I would not force ANYONE to take it. I would discuss the options with Joe at length. I think he would chose to take it, but if he said "no" that would be that. Of course so much would depend on side effects that even discussing the possibility is sort of foolish.
But I get so frustrated by the "neuro-diversity" crowd that thinks we do not need a cure. Maybe they don't. But I do. I want to unlock the mystery inside of Alan's brain. He is so cuddly and affectionate and has such an infectious giggle but he also has a blood curdling shriek that I don't understand. I try. I come up with all sorts of interpretations, but I just do not know what he wants some days.
Trust me, I get that life isn't fair. DH and I regularly joke about
that. Most of the time, I laugh about our life. After all, it is
inherently funny to watch some of Alan's climbing activities. But when
he is wrecking our house and trying to climb on the electrical fixtures
and the heater because we aren't letting him outside to climb, it is a
little less funny. When he was going through his "poop smearing" phase and we were cleaning his room at least every 24 hours, that was definitely less funny.I am terrified quite regularly when I think of the future. I have a child that will need life long care. What happens when I am not around to provide it? My older son cannot care for my younger one. Both DH and I are the youngest in our respective families. Th
at means all aunts and uncles are older than us. What happens when Alan is a 30 year old adult and everyone around him is 60+? He can already overpower me and he is still (marginally) smaller than me. When I said that Kelli Stapleton did the wrong thing but I wanted to understand it, I was criticized. Someone said that anyone that thought like that didn't want an autistic child. That in fact, they wanted a neuro-typical kid. Um, yes. Actually I do want a neuro-typical child. Two of them would be nice. I love my boys with all my heart and soul, but I don't want them to have all the struggles they do. If some people believe this makes me a bad parent, then so be it.
I've never claimed to be perfect. Far from it, as a matter of fact! The popular expression is "love the sinner, hate the sin." Well, I love my autistic kids but I hate their autism. That is just the way it is.
Sunday, July 28, 2013
An eye on the future
In two weeks, my "baby" starts high school. Two weeks later he turns 15. Where has the time gone? It seems only yesterday that I was holding the most agreeable baby in the world (or so he seemed after his brother). Now I am practically looking eye to eye with Alan.
Yet he is still so "young". He still wants to play "This Little Piggy" and "Row, Row your Boat." He still watches Veggie Tales and Thomas the Tank Engine. But he had a "girlfriend" his last year of middle school.
He is such a little conundrum!!!
We have had wonderful successes lately. Almost conversations and break-throughs in communication. I've also had moments of abject terror that haven't been chronicled here where I fear for this young man's future. He doesn't have a sibling that can care for him -- Joe can barely take care of himself -- so what is going to happen to him when DH and I are gone?
How will his new teacher and school turn out? I know of almost no one that has gone to this school and I have no knowledge at all of his new teacher.
It is funny, but over the years, things have always worked out.
So while this is not usually an overly religious blog, I am just going to say that I am trusting that God will take care of us yet again and this high school mine field we are facing will be successfully negotiated.
At least I am trying to trust and not let the terror win.
Yet he is still so "young". He still wants to play "This Little Piggy" and "Row, Row your Boat." He still watches Veggie Tales and Thomas the Tank Engine. But he had a "girlfriend" his last year of middle school.
He is such a little conundrum!!!
We have had wonderful successes lately. Almost conversations and break-throughs in communication. I've also had moments of abject terror that haven't been chronicled here where I fear for this young man's future. He doesn't have a sibling that can care for him -- Joe can barely take care of himself -- so what is going to happen to him when DH and I are gone?
How will his new teacher and school turn out? I know of almost no one that has gone to this school and I have no knowledge at all of his new teacher.
It is funny, but over the years, things have always worked out.
- When we wanted to put Joe in private school because of the horrible experience we were having in public school, DH got a promotion. That school turned out to be one of the best moves we made.
- When Joe was looking at high school and we couldn't find a private one that wanted him, we went back to our local public school and for the most part it was a rousing success.
- When Alan needed a private school, the Catholic school system here opened up a center for autism a few miles from our home.
- When Alan's OCD became more than the private school could handle, we were past elementary school so we didn't have to fight with the school district why he wouldn't go back to that school.
So while this is not usually an overly religious blog, I am just going to say that I am trusting that God will take care of us yet again and this high school mine field we are facing will be successfully negotiated. At least I am trying to trust and not let the terror win.
Friday, July 5, 2013
Night and Day
My boyz are as different as night and day. We've all heard the expression ad nauseum "If you've met one person with autism, you've met one person with autism."
but even the most jaded person in the world would think that two boyz
from the same gene pool, raised in the same environment with the same
diagnosis would have more things in common than not in common.
I'm here to provide evidence to the contrary.
Both my boys have communication problems. Joe didn't talk at all until he was almost 3 and then started spouting words and phrases from books at a phenomenal pace although comprehension is still an issue at 18. Alan, on the other hand, seemed to develop typically until he was about 2 and then rapidly regressed and seemed to stagnate. Grrrrr Just when you think you have this autism figured out, the second one is completely different from the first.
What was difficult for Joe (potty training) happened almost overnight with Alan.
What worked so well for Joe (ABA) had almost no effect on Alan -- he just ritualized things.
.JPG)
Alan goes barefoot every chance he gets (even in this picture from last December when there is still ice in the raingauge) but Joe puts on his sandals every time he needs to step on the grass because of his sensitivity issues.
Joe always has something in his hands in his toddler pictures (usually several somethings) but Alan always wanted his hands free to climb.
Joe has always been sound sensitive. He hated fire alarms at school, he used to wear noise muffling headphones for watching fireworks (and we weren't that close) and he still wears them for cutting the grass. Alan likes making the most piercing noises known to man but doesn't seem to care what sort of noises are in the environment.
Even for things that they both loved (their wooden toy trains) they played completely differently. Joe would carry around a handful most of the time but when he played trains, it was to run them along the track stimming out of the corner of his eye. Alan likes to make very long continuous trains and crash them off a high surface.
Joe is unbelievably gentle for a boy. He doesn't like violence and has only lashed out physically a handful of times. Alan came out of the crib headbutting. I have a very vivid memory of telling him no about something when he was barely walking and him turning around and headbutting Joe in the back.
They both love swimming, but Alan loves the ocean and waves and Joe is skittish of critters and prefers swimming pools and his mask.
Joe used echolalia and scripting to start talking. He would take a phrase he had heard in a book or a movie and apply it to a different situation to come up with an expression that was most times appropriate. Alan just scripts for the stim.
Alan is a complete daredevil and climbs to the top of everything while Joe is a little bit scared of heights.
Alan has been known to elope on more than one occasion (going so far as to attempt to walk to his aunt's house 5 miles away), but Joe just leaves the situation and then comes back when he has calmed down.
Joe is a complete pack rat while Alan loves to "clean up" and has thrown out numerous things we then had to fetch out of the trash including silverware and unwanted toys.
Joe has always loved crafts of all sorts, but paper/pencil activities are torture for Alan.
Joe always slept like the dead but Alan had a more difficult time falling asleep and tended to wake up at first light. This has improved since he has become a teenager but he is still our usual weekend alarm clock. Trust me, it is impossible to sleep through a 160 lb. kid back flipping out of bed on the floor above you!
Alan is very motivated by "task completion". At school, they frequently use finishing a job as the reward for doing the job itself. We joke that this is the reason Alan gets in the ocean and starts swimming for the horizon -- he has to get to the other side! Joe on the other hand, loves to start projects ("I am going to type all the numbers from 1 to 1,000,000.") and a few days later he loses his motivation.
So for those people out there that do not like the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) changes to the definition of autism, I would like to point out that I think in many ways this will be more accurate. Under the DSM-IV, both my boyz are "PDD-NOS". This does not even begin to cover their complex differences. At least with DSM-5 they will be level 1 (Joe) and level 3 (Alan).
Rob Growski of Lost and Tired said, "The most dangerous mistake in Autism is generalization." He's got that right!
I'm here to provide evidence to the contrary.
Both my boys have communication problems. Joe didn't talk at all until he was almost 3 and then started spouting words and phrases from books at a phenomenal pace although comprehension is still an issue at 18. Alan, on the other hand, seemed to develop typically until he was about 2 and then rapidly regressed and seemed to stagnate. Grrrrr Just when you think you have this autism figured out, the second one is completely different from the first.
What was difficult for Joe (potty training) happened almost overnight with Alan.
What worked so well for Joe (ABA) had almost no effect on Alan -- he just ritualized things.
.JPG)
Alan goes barefoot every chance he gets (even in this picture from last December when there is still ice in the raingauge) but Joe puts on his sandals every time he needs to step on the grass because of his sensitivity issues.Joe always has something in his hands in his toddler pictures (usually several somethings) but Alan always wanted his hands free to climb.
Joe has always been sound sensitive. He hated fire alarms at school, he used to wear noise muffling headphones for watching fireworks (and we weren't that close) and he still wears them for cutting the grass. Alan likes making the most piercing noises known to man but doesn't seem to care what sort of noises are in the environment.
Even for things that they both loved (their wooden toy trains) they played completely differently. Joe would carry around a handful most of the time but when he played trains, it was to run them along the track stimming out of the corner of his eye. Alan likes to make very long continuous trains and crash them off a high surface.
Joe is unbelievably gentle for a boy. He doesn't like violence and has only lashed out physically a handful of times. Alan came out of the crib headbutting. I have a very vivid memory of telling him no about something when he was barely walking and him turning around and headbutting Joe in the back.
They both love swimming, but Alan loves the ocean and waves and Joe is skittish of critters and prefers swimming pools and his mask.
Joe used echolalia and scripting to start talking. He would take a phrase he had heard in a book or a movie and apply it to a different situation to come up with an expression that was most times appropriate. Alan just scripts for the stim.
Alan has been known to elope on more than one occasion (going so far as to attempt to walk to his aunt's house 5 miles away), but Joe just leaves the situation and then comes back when he has calmed down.
Joe is a complete pack rat while Alan loves to "clean up" and has thrown out numerous things we then had to fetch out of the trash including silverware and unwanted toys.
Joe has always loved crafts of all sorts, but paper/pencil activities are torture for Alan.
Joe always slept like the dead but Alan had a more difficult time falling asleep and tended to wake up at first light. This has improved since he has become a teenager but he is still our usual weekend alarm clock. Trust me, it is impossible to sleep through a 160 lb. kid back flipping out of bed on the floor above you!Alan is very motivated by "task completion". At school, they frequently use finishing a job as the reward for doing the job itself. We joke that this is the reason Alan gets in the ocean and starts swimming for the horizon -- he has to get to the other side! Joe on the other hand, loves to start projects ("I am going to type all the numbers from 1 to 1,000,000.") and a few days later he loses his motivation.
So for those people out there that do not like the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) changes to the definition of autism, I would like to point out that I think in many ways this will be more accurate. Under the DSM-IV, both my boyz are "PDD-NOS". This does not even begin to cover their complex differences. At least with DSM-5 they will be level 1 (Joe) and level 3 (Alan).
Rob Growski of Lost and Tired said, "The most dangerous mistake in Autism is generalization." He's got that right!
Wednesday, July 3, 2013
The second born
Alan was soooooooo different from Joe as a baby. He was cuddly, social and just fun. I thought then that most of it was because I was a more relaxed mom and I am sure that was a significant part, but I also believe he was just more typical.
He was however a huge baby. He was 10 lb. 7 oz. and 22" long and he was 2 days early! I had four different people (including the nurse at our parenting class) ask me if I was having twins. That was very hard on Mom’s morale!
In fairness to the nurse (and the other three peeps) I did gain 49 lbs. that I would claim. I might have gained more but I was terrified to get on the scale at the end.
Alan always had a twisted foot. It is even visible in his crib. And when he started to crawl, his foot was always getting in the way. I think the poor guy was just cramped in the womb and his foot grew that way. A little more guilt for mom. Even with his twisted foot, he
In many ways Alan was the classic second child (at least in our family). He was resourceful, opinionated, and mischievous.
In our 1999 Christmas letter I said "Alan is 15 months old and already has about 20 words so hopefully we won't have any language difficulties this time around." Ha! Mom was so delusional!
Of course by the 2000 letter, things were different.
Unfortunately, Alan is not talking much and just got tested and approved for First Steps (the program which helped Joe get his speech and language therapy before age 3). Sigh. Here we go again. If there was one lottery in life we would have preferred NOT to win it would be the "All our kids need Special Education for Speech and Language difficulties."
And yet when I went looking for pictures for this post I found dozens of pictures of Alan staring intently at other people (usually children) rather than at whoever had the camera. I didn't have that with Joe. I can't imagine I culled them all out so I think Joe just wasn't as interested in other kids as Alan was.
The differences as they have grown and developed have been just as noticeable. Of course in the "mom guilt" column I have the extensive language journal I compiled for Joe and with Alan I could only look in the photo album and old Christmas letters and hope I was interpreting things correctly.
Next up:
Comparing and contrasting the two … because for two children from the same genetic pool with the same diagnosis, these boyz are as different as night and day!
Monday, July 1, 2013
Little Joe
Looking back on Joe as an infant, it is easy to see he had autism. Of course DH and I had very limited experience with babies so to us, he was just "Joe" and if we thought anything was wrong, we figured it was because we didn't know how to handle a baby.
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| 3 trains in one hand - that is a unique skill. |
But Joe did not like cuddling much. He never imitated noises and if you would try to imitate his noises, he would get quiet and listen to you but not make his own. He ALWAYS had at least two things in his hands at all times.
He would make himself go rigid when he was angry and he went to sleep best by being left alone. Of course, unlike many children with infant onset autism, Joe also slept like a rock. He slept through the night at 2.5 months and before 4 months he was sleeping 12 hours straight every night.
We were in a playgroup and I noticed that all the other kids were starting to talk at around 10 - 18 months, but not Joe. Nor was he pointing. I started pouring through What to Expect the First Year and couldn't find anything about late talking children except autism. The description in those days was quite narrow and of course, Joe didn't sit in the corner and rock, he didn't toe walk and he wasn't excessively flappy. As a matter of fact, my incredibly non-autistic niece did much more toe walking and flapping than Joe!
At 18 months, DH and I were assured by everyone and their pediatrician that Joe would be talking by age 2 and to just "Give it time. Boys take longer."
Needless to say at 2 Joe still wasn't talking. As a matter of fact, he had about 15 words when he was evaluated by a speech therapist shortly after turning 2 and 5 of them were letters of the alphabet. He had briefly said "see" and sort of waved in a direction (although still not pointing) but "see" degenerated into "gee" which degenerated into "guy". Needless to say the SLP that First Steps provided was not impressed and she was the first one that said "PDD-NOS" to us (of course with all the necessary disclaimers "I'm not a doctor", "You really need to get him evaluated", etc.)
We loathed that first speech therapist for more reasons than just the fact that she was the first one to say "autism" to us. She had a very hesitant way of speaking, constantly apologizing and never finishing her sentences, and DH and I just looked at her and at each other and thought, "This woman is going to teach our son to talk?"
After her we did get a wonderful speech therapist that we loved and Joe loved, but he still didn't talk. He actually deteriorated further to where he only had 10 real words, so we finally bit the bullet and took him to a neurologist.
As with the speech therapist we managed to get the worst neurologist in town. He had hideous eye contact and stupid boring toys and then said that Joe had poor eye contact and wasn't interested in toys. Well duh!
Of course the sad thing was that he was correct in his diagnosis. We were still in
Sometime that fall I read Let Me Hear Your Voice by Catherine Maurice. The book was incredibly inspirational and really motivated me to get going on ABA. At that time ABA was not being funded at all through the schools so we were looking at privately paying. Needless to say, that can get pretty expensive pretty quick so we decided to do something we jokingly referred to as "high chair therapy". We could still cram Joe into a high chair and it was an easy way to restrain him. We got a handful of favorite snacks and tried to get him to imitate us or say certain things in exchange for a snack.
He resisted at first -- big surprise! In one of the early sessions, DH was working with him and Joe grabbed DH by the cheeks and pulled him in close as though to get his attention. Then he smacked DH upside the head as hard as his little two year old arm could hit. As DH said, "He might not have been talking, but he got his point across perfectly!"
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| Clutching foam letters & numbers at Discovery Zone. |
About six months after this, we started our home ABA program. We were privately paying for it so we only did it for about 10 hours a week. But this was the jackpot. Joe could have been the poster child for ABA.
His preschool teacher (whom we didn't tell about the program) stopped me one day as I was dropping him off and talked my ear off about all the amazing progress Joe had made during summer school that summer. Um, yeah, that isn't to your credit that is due to the fabulous paras we have! We did tell her at that point though that we had been doing ABA and she helped us to get partially reimbursed by the school district.
ABA was Joe's primary method of learning for a year or more. One para taught him most of his prepositions in one afternoon by having him get "on" the table, "under" the table, etc. It was fun for him and yet incredibly educational. Another taught him his colors in exchange for her French fries.
And of course, DH and I learned so many "foolproof" ways to deal with autistic children that we couldn't fail when we had a second child with the exact same diagnosis, now could we?!?!?!
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