Over the weekend we went to a play my brother in law was in. My sister in law watched the kids at her house so we could go (she had been to his show twice already). I was a little nervous because we hadn't been to their house since I was pregnant with E-man. Not knowing where he may try to escape from can be a little stressful. My in laws know us very well though and had everything on lock down with my sister in law on E-man and my 16 year old niece on Little Buddy. It's basically man to man defense when we are out and about. At home is more of a zone defense strategy, it works out pretty well. And thanks to our fantastic family we got to enjoy the play.
We got back and had dinner, the kids played a little longer and things started to wind down. The drive home is two and half hours, so we headed out a little early.
We were on a little windy road in the mountains, over looking the whole city with all the lights. I pointed it out to E-man (LB was already conked out at this point), he looked at it and smiled. Just as I was starting to think about how my favorite part of parenting is when you share something with your child and watch them discover something new, E-man puked.
Like exorcist style retching, all over himself, the car seat, the floor around him and the big toy pirate ship we brought for LB. My warm cozy feelings vanished, as we found ourselves in the middle of nowhere with a barf encrusted child. Just as he finished vomiting he sang the chorus of Heart's "Barracuda" that we had playing. Neither Martin or I had ever heard him sing the words. Hearing his little voice weakly sing "barracuuuda" right after puking was so dang cute we started laughing at the situation we found ourselves in.
We quickly came up with a plan, we pulled over, I wiped him down as best I could while Martin called his mom to see if we could come clean up more. Grandma to the rescue! She was home and helped us clean everything up when we got there and we spent the night.
What's even funnier is that earlier in the day I was feeling so proud that I had prepared so well for this trip.
Murphy's law of parenting #312: don't get too smug about your prep skills or your kid will barf and or poop their pants in a really inconvenient location.
Here's the thing though, getting through the weird parenting curve balls almost always make a great story you can laugh about later.
I'm all about the silver linings.
Monday, October 13, 2014
Wednesday, August 20, 2014
Kindergarten
E-man started kindergarten a couple days ago. I can't believe my oldest boy is already going to kindergarten! Sometimes when I'm hugging him I'm amazed that he was once a tiny baby I held in my arms. But they all grow up, right?
We had his IEP last April to determine his class placement. While we were not in agreement with the team about the classroom, we did agree on all the services and goals. The services include speech therapy twice a week, a one to one aide and a month of training for the aide from the school he currently receives therapy through. Since the meeting I have also talked to the teacher, she has experience with autistic kids and so far has been easy to contact and communicate with. The kindergarten he's attending is one for special needs kids on the more severe side. When we did a tour of all our options we saw this classroom and there was a wide range of disabilities. E-man is probably somewhere in the middle of the kids in this class abilities-wise. And I'm not going to lie, this was a huge hit to my pride. Having a kid with special needs is hard. Having one in the lowest level abilities class kind of just smacks you in the face.
The hardest part of the whole process was that E-man had a psychological assessment that deemed him not only on the autism spectrum but also intellectually disabled (which the psychologist so helpfully pointed out was formerly known as "mentally retarded", I wanted to punch her face).
Now here's my gripe about this new label "intellectually disabled", the tests they use to determine IQ are all language based. E-man does not use language yet. He is not dumb. He just doesn't fit the mold for the tools they are measuring him with. It's extremely frustrating. I am trying my best to be objective when I think about it and not let myself sink into denial. However, anyone who spends a decent amount of time with E-man sees that he has a lot going on in his mind, he just hasn't shared it yet. It makes me think of that quote all over the internet:
"Everybody is a genius. But if you judge a fish on his ability to climb a tree, it will live it's whole life believing it is stupid"
E-man is definitely not stupid, when he wants something he figures out how to make it happen. I'm not saying he's a genius, he does have his limitations. But there is far more going on behind those bright eyes than we know right now.
The silver lining to this new label is that it's not forever. As he learns and grows we are hoping that he will no longer fall under the category of intellectually disabled.
The other difficult part of the process was feeling like an inadequate advocate for him during the meetings. When I think back to it now I wish there were things I had said or pointed out at the time. It gets so overwhelming and intimidating. It was an eye opener in what to expect and how to prepare myself for meeting that will come for both E-man and Little Buddy in the future.
It was a learning experience at least.
My plan moving forward is to be on the school's ass to make sure IEP goals are being met and that expectations of E-man are high, no matter what labels he has. The hubby and I are discussing hiring a professional advocate to attend meetings with us to have an objective and knowledgable person on our side. I'm hopeful for this year and feeling hesitant to trust the school system. We'll see how it goes and at the very least we will have better experience to fight LB's battles too.
We had his IEP last April to determine his class placement. While we were not in agreement with the team about the classroom, we did agree on all the services and goals. The services include speech therapy twice a week, a one to one aide and a month of training for the aide from the school he currently receives therapy through. Since the meeting I have also talked to the teacher, she has experience with autistic kids and so far has been easy to contact and communicate with. The kindergarten he's attending is one for special needs kids on the more severe side. When we did a tour of all our options we saw this classroom and there was a wide range of disabilities. E-man is probably somewhere in the middle of the kids in this class abilities-wise. And I'm not going to lie, this was a huge hit to my pride. Having a kid with special needs is hard. Having one in the lowest level abilities class kind of just smacks you in the face.
The hardest part of the whole process was that E-man had a psychological assessment that deemed him not only on the autism spectrum but also intellectually disabled (which the psychologist so helpfully pointed out was formerly known as "mentally retarded", I wanted to punch her face).
Now here's my gripe about this new label "intellectually disabled", the tests they use to determine IQ are all language based. E-man does not use language yet. He is not dumb. He just doesn't fit the mold for the tools they are measuring him with. It's extremely frustrating. I am trying my best to be objective when I think about it and not let myself sink into denial. However, anyone who spends a decent amount of time with E-man sees that he has a lot going on in his mind, he just hasn't shared it yet. It makes me think of that quote all over the internet:
"Everybody is a genius. But if you judge a fish on his ability to climb a tree, it will live it's whole life believing it is stupid"
E-man is definitely not stupid, when he wants something he figures out how to make it happen. I'm not saying he's a genius, he does have his limitations. But there is far more going on behind those bright eyes than we know right now.
The silver lining to this new label is that it's not forever. As he learns and grows we are hoping that he will no longer fall under the category of intellectually disabled.
The other difficult part of the process was feeling like an inadequate advocate for him during the meetings. When I think back to it now I wish there were things I had said or pointed out at the time. It gets so overwhelming and intimidating. It was an eye opener in what to expect and how to prepare myself for meeting that will come for both E-man and Little Buddy in the future.
It was a learning experience at least.
My plan moving forward is to be on the school's ass to make sure IEP goals are being met and that expectations of E-man are high, no matter what labels he has. The hubby and I are discussing hiring a professional advocate to attend meetings with us to have an objective and knowledgable person on our side. I'm hopeful for this year and feeling hesitant to trust the school system. We'll see how it goes and at the very least we will have better experience to fight LB's battles too.
Friday, June 13, 2014
My Dad
Growing up my Dad worked 6 days a week. He owned his own business with my Mom, restoring antique stoves and running an antique thrift shop.
If he wasn't in his shop working he'd be traveling all over the Bay Area doing service calls to fix stoves. He told me once the busiest time of year was the holidays because everyone needed their ovens to work so they could feed their families. My brother and I spent time with my Dad while he worked. We all took long trips to the scrap yard (I was in it for the pancake breakfast), helped move furniture and dusted the antiques in the store. In high school my Dad had to get a job at the city because the store wasn't doing as well.
Even when he got that job he continued the stove business without the store front.
The majority of my childhood memories of my Dad are of him working in his shop.
My whole life he has worked so hard to provide for my family. He always told me to pick a job that used my mind, not my hands. He just wanted better for his kids.
One time after getting home from his city job he sat down for a few minutes. Then he said "Ok I'm going to go work outside"
I asked "Don't you get tired of working?"
He looked at me like he was so glad one of his kids had finally asked this question.
He said "Yes. I do."
Then got up and went to work.
Happy Father's Day to my Dad, one of the hardest working men I know.
If he wasn't in his shop working he'd be traveling all over the Bay Area doing service calls to fix stoves. He told me once the busiest time of year was the holidays because everyone needed their ovens to work so they could feed their families. My brother and I spent time with my Dad while he worked. We all took long trips to the scrap yard (I was in it for the pancake breakfast), helped move furniture and dusted the antiques in the store. In high school my Dad had to get a job at the city because the store wasn't doing as well.
Even when he got that job he continued the stove business without the store front.
The majority of my childhood memories of my Dad are of him working in his shop.
My whole life he has worked so hard to provide for my family. He always told me to pick a job that used my mind, not my hands. He just wanted better for his kids.
One time after getting home from his city job he sat down for a few minutes. Then he said "Ok I'm going to go work outside"
I asked "Don't you get tired of working?"
He looked at me like he was so glad one of his kids had finally asked this question.
He said "Yes. I do."
Then got up and went to work.
Happy Father's Day to my Dad, one of the hardest working men I know.
Sunday, May 4, 2014
Lonely
Raising special needs children can be a lonely business.
My immediate family and friends are amazingly supportive and do their best to understand. But sometimes when you need to talk about really heavy stuff or just really gross stuff that autistic kids do it's hard to relate to people who don't live it.
Lots of times people will say "oh all kids do that". It is technically true in some cases and I completely understand the intent with telling a special needs parent something along those lines. People really want to make you feel better and they say it so you can feel like your kid is doing something a neurotypical kid does.
The difference in an autistic child is that they may do that specific thing fifty times in an hour or have a really hard time transitioning or in the worst case scenario have a meltdown that becomes out of control. You see, the actual thing by itself isn't always terrible, it's just that this behavior is exacerbating a parents very deep feelings of stress. Depending on the day, the behavior can make you sad or mad, embarrassed or just hopeless. It can be the proverbial straw that broke the camels back.
So when a person says all kids do that particular thing it basically shuts down any helpful conversation and downplays the serious emotions that accompany these situations.
And I get it, it's hard to know what to say sometimes. It's just an example to illustrate how hard it can be to relate. It's really a sticky situation on both sides because no one wants to offend and I myself don't want to be overly sensitive. Knowing that people are usually good at heart and doing their hardest to be kind is understood. It's just the reality of our situation and it gets murky.
My best friend has always been easy to talk to about the tough stuff.
Late last year she moved out of state and left me missing my coffee buddy. She spent a lot of time with us and the boys and totally got it. Since she was a nurse it was ok to talk about scary or gross stuff because honestly, nursing can be both a lot of times. When she left a lot of emotional support left, support that you can't quite replicate over the phone. Over time I've started branching out a little in talking to other autism moms, doing a moms night out and having coffee with a few that live in my town. These women have been a lifeline of sorts, they deal with the same school districts, the same doctors and school psychologists and IEP teams. The insight, support and ideas are really invaluable.
We also joined a special needs soccer team that E-man participates in on the weekends. Having activities in our community with "our people" is great, seeing kids and families of all abilities is in it's own way validating our lives and experiences. We really aren't alone.
The online autism community has also been helpful these past few months. In the same way that soccer validates my feelings, a mom on twitter getting excited that her kid read aloud or another mom who is lamenting a tough day makes me feel less alone and less ashamed that I get mad, sad, angry or frustrated with my kids.
My friend leaving ended up opening me up to people and experiences I may have missed out on if she hadn't left me for the Big Apple.
It's a true blessing in disguise (and now I have a really good excuse to visit New York!).
It looks like my world is becoming a little less lonely and starting to feel a tiny bit bigger.
My immediate family and friends are amazingly supportive and do their best to understand. But sometimes when you need to talk about really heavy stuff or just really gross stuff that autistic kids do it's hard to relate to people who don't live it.
Lots of times people will say "oh all kids do that". It is technically true in some cases and I completely understand the intent with telling a special needs parent something along those lines. People really want to make you feel better and they say it so you can feel like your kid is doing something a neurotypical kid does.
The difference in an autistic child is that they may do that specific thing fifty times in an hour or have a really hard time transitioning or in the worst case scenario have a meltdown that becomes out of control. You see, the actual thing by itself isn't always terrible, it's just that this behavior is exacerbating a parents very deep feelings of stress. Depending on the day, the behavior can make you sad or mad, embarrassed or just hopeless. It can be the proverbial straw that broke the camels back.
So when a person says all kids do that particular thing it basically shuts down any helpful conversation and downplays the serious emotions that accompany these situations.
And I get it, it's hard to know what to say sometimes. It's just an example to illustrate how hard it can be to relate. It's really a sticky situation on both sides because no one wants to offend and I myself don't want to be overly sensitive. Knowing that people are usually good at heart and doing their hardest to be kind is understood. It's just the reality of our situation and it gets murky.
My best friend has always been easy to talk to about the tough stuff.
Late last year she moved out of state and left me missing my coffee buddy. She spent a lot of time with us and the boys and totally got it. Since she was a nurse it was ok to talk about scary or gross stuff because honestly, nursing can be both a lot of times. When she left a lot of emotional support left, support that you can't quite replicate over the phone. Over time I've started branching out a little in talking to other autism moms, doing a moms night out and having coffee with a few that live in my town. These women have been a lifeline of sorts, they deal with the same school districts, the same doctors and school psychologists and IEP teams. The insight, support and ideas are really invaluable.
We also joined a special needs soccer team that E-man participates in on the weekends. Having activities in our community with "our people" is great, seeing kids and families of all abilities is in it's own way validating our lives and experiences. We really aren't alone.
The online autism community has also been helpful these past few months. In the same way that soccer validates my feelings, a mom on twitter getting excited that her kid read aloud or another mom who is lamenting a tough day makes me feel less alone and less ashamed that I get mad, sad, angry or frustrated with my kids.
My friend leaving ended up opening me up to people and experiences I may have missed out on if she hadn't left me for the Big Apple.
It's a true blessing in disguise (and now I have a really good excuse to visit New York!).
It looks like my world is becoming a little less lonely and starting to feel a tiny bit bigger.
Tuesday, February 4, 2014
The Boys
E-man and Little Buddy have been a handful lately. LB has graduated to this stage where he wants to throw everything. He especially loves forks, he'll gather up a few from the drawer when I am not looking and while running throw them up in the air to watch them fall. One night he was doing that and E-man found some tent poles he was running around with and I was worried Martin would come home to find me impaled to the wall.
When the kids develop this off beat pattern with an object my job is to figure out a way we can make it a game or somehow direct the pattern of play into something that might happen in real life. Stuff like play eating with the forks, having a doll use the forks or anything really that won't injure him or anyone else is preferable. LB is having none of it, so when I take the forks away it's on to a new object to throw and the whole cycle begins again. It can be a real struggle to try to figure out what to do with these items to redirect his attention away from throwing them.
On top of that LB has had some eye issues the past couple of months when he started crossing his right eye in. After taking him to two specialists the conclusion that was drawn is that his eye sight is fine but he needs to wear a patch on his left (good) eye to help strengthen his weaker eye. Thankfully it's only for 2-3 hours a day, but man that 2 hours (the most we've been able to get him to keep it on) is that longest evvveeeeeeeerrrrrrrr. However his tolerance of it is getting better, but I can't leave him alone with it.
On the other hand, E-man is doing pretty well and has been fairly happy lately. The challenging thing that has come up with him is actually at preschool. While there he has an IA (instructional assistant), two times in the past month when the IA used the restroom E-man has tried to elope from the classroom. Thankfully he never made it much past the outside of the door (which opens up into a gated playground). At his last IEP meeting I let the team know I wanted to be notified of this behavior and I want it documented each time. After that meeting is when these two times occurred and it makes me wonder if they happened previously and I was just not told. I feel like I am learning a big lesson here. Things may go on that I will never find out about and if it is something I need or want to know I have to not shy away from making these needs known in the future. At that last IEP we discussed how E-man's strengths tend to be in the cognitive realm, which can be a double edged sword. He is smart, which obviously is good but it can make it tough to get him to ask or engage you in some way if he can figure out how to get what he wants on his own. With him I feel like I need to be two steps ahead in any situation.
They are handfuls now but I am learning ways to help me deal with the stress and one big one is exercising. I know, I know, it's annoying to hear but it is very true. I didn't really realize the impact it had on my ability to cope until I was majorly slacking off and suddenly everyone seemed unbearably annoying. It was a good realizations and I have come to a few new conclusions about my health and well being I want to detail in another post. So until then I am doing burpees for my sanity.
When the kids develop this off beat pattern with an object my job is to figure out a way we can make it a game or somehow direct the pattern of play into something that might happen in real life. Stuff like play eating with the forks, having a doll use the forks or anything really that won't injure him or anyone else is preferable. LB is having none of it, so when I take the forks away it's on to a new object to throw and the whole cycle begins again. It can be a real struggle to try to figure out what to do with these items to redirect his attention away from throwing them.
On top of that LB has had some eye issues the past couple of months when he started crossing his right eye in. After taking him to two specialists the conclusion that was drawn is that his eye sight is fine but he needs to wear a patch on his left (good) eye to help strengthen his weaker eye. Thankfully it's only for 2-3 hours a day, but man that 2 hours (the most we've been able to get him to keep it on) is that longest evvveeeeeeeerrrrrrrr. However his tolerance of it is getting better, but I can't leave him alone with it.
On the other hand, E-man is doing pretty well and has been fairly happy lately. The challenging thing that has come up with him is actually at preschool. While there he has an IA (instructional assistant), two times in the past month when the IA used the restroom E-man has tried to elope from the classroom. Thankfully he never made it much past the outside of the door (which opens up into a gated playground). At his last IEP meeting I let the team know I wanted to be notified of this behavior and I want it documented each time. After that meeting is when these two times occurred and it makes me wonder if they happened previously and I was just not told. I feel like I am learning a big lesson here. Things may go on that I will never find out about and if it is something I need or want to know I have to not shy away from making these needs known in the future. At that last IEP we discussed how E-man's strengths tend to be in the cognitive realm, which can be a double edged sword. He is smart, which obviously is good but it can make it tough to get him to ask or engage you in some way if he can figure out how to get what he wants on his own. With him I feel like I need to be two steps ahead in any situation.
They are handfuls now but I am learning ways to help me deal with the stress and one big one is exercising. I know, I know, it's annoying to hear but it is very true. I didn't really realize the impact it had on my ability to cope until I was majorly slacking off and suddenly everyone seemed unbearably annoying. It was a good realizations and I have come to a few new conclusions about my health and well being I want to detail in another post. So until then I am doing burpees for my sanity.
Monday, January 6, 2014
Christmas
Christmas crept up on us this year, I picked up a bunch of lactation hours for December and the hubby was extra busy at work too. By the time Christmas rolled around I wasn't really excited about it. So what do you do to get in the holiday spirit? Get a tree, decorate it while cooking something delicious (beef soup that night) and listen to holiday music.
That did the trick and the boys loved the tree, E-man helped test the lights and hang ornaments. Little Buddy ran around excitedly, inspecting ornaments but he lost interest pretty quickly.
Christmas is a little strange for us because there is no way to know what the boys understand. For example, Santa might just be a big red dude who shows up at parties for them. E-man loves him though, his preschool teacher sent me pictures of him sitting on his lap all excited. LB hasn't shown much interest but it was the same with E-man a few years ago. I don't think we will go out of our way to sell the whole Santa idea anyway. For two kids who can be quite literal convincing them that Santa is real then later having to explain that he's not and that they can't tell other kids seems like it would just be confusing. So we will just enjoy the jolly man who likes to party.
We also did gifts a little differently this year. Instead of wrapping up everything we set it all up so that when they walked out of their rooms the living room had a bunch of cool stuff in it. To them a wrapped box doesn't mean much and neither of the boys find much excitement in unwrapping a gift. After setting it all up I videotaped them waking up and walking in the living room, it was adorable.
In addition to our Christmas at home there were three holiday gatherings we attended this year. Lots of effort was made by grandparents to E-man proof their houses. It was sooooo very much appreciated. It's always a lot of work to go to any get together with the kids but the extra security measures made it easier and more enjoyable to just hang out.
The holidays seemed to be a hit this year and I really enjoyed the time off Martin and I had together. I'm hoping to keep up my blogging a little more in the future, thanks for sticking around and reading about our little family. Hope all of you have a wonderful 2014.
That did the trick and the boys loved the tree, E-man helped test the lights and hang ornaments. Little Buddy ran around excitedly, inspecting ornaments but he lost interest pretty quickly.
Christmas is a little strange for us because there is no way to know what the boys understand. For example, Santa might just be a big red dude who shows up at parties for them. E-man loves him though, his preschool teacher sent me pictures of him sitting on his lap all excited. LB hasn't shown much interest but it was the same with E-man a few years ago. I don't think we will go out of our way to sell the whole Santa idea anyway. For two kids who can be quite literal convincing them that Santa is real then later having to explain that he's not and that they can't tell other kids seems like it would just be confusing. So we will just enjoy the jolly man who likes to party.
We also did gifts a little differently this year. Instead of wrapping up everything we set it all up so that when they walked out of their rooms the living room had a bunch of cool stuff in it. To them a wrapped box doesn't mean much and neither of the boys find much excitement in unwrapping a gift. After setting it all up I videotaped them waking up and walking in the living room, it was adorable.
In addition to our Christmas at home there were three holiday gatherings we attended this year. Lots of effort was made by grandparents to E-man proof their houses. It was sooooo very much appreciated. It's always a lot of work to go to any get together with the kids but the extra security measures made it easier and more enjoyable to just hang out.
The holidays seemed to be a hit this year and I really enjoyed the time off Martin and I had together. I'm hoping to keep up my blogging a little more in the future, thanks for sticking around and reading about our little family. Hope all of you have a wonderful 2014.
Friday, November 22, 2013
Escape
A few nights ago we were hanging out after dinner with the kids.
I went to use the restroom, Little Buddy got upset that I left and started crying. Martin was consoling him in the hallway when E-man quietly slipped out the front door and into the night.
I came out into the hallway and took LB, Martin went to the back of the house. I noticed I couldn't hear E-man at all. I scanned all the rooms and couldn't find him. Starting to get nervous I went back to the front room and noticed the front door open the tiniest bit.
My heart dropped, running for the door I opened it, he wasn't on the porch. I screamed his name.
I stepped back in the house yelled for Martin and not waiting for a response I left LB by himself in the living room and sprinted outside. My first thought was the park near our house, he knows the general direction and that was the most likely place he would go. I ran into the front yard and onto the sidewalk, in my peripheral vision I saw a blur of orange, I turned and there he was. E-man in his red Avengers t-shirt, dark blue pants, barefoot in the middle of the street a few houses down. It was almost like he had a spotlight on him from the street lamp nearby. He was laughing and looking at his shadow on the ground. I called for him and he looked up, smiling. I ran for him, as I ran to get him he started running towards me. I scooped him up whispering his name and thanking God he was ok. I carried him all the way home.
When I got in the door LB was crying, Martin was still in the back of the house. Shaking, I told him what had happened.
The whole rest of the night I couldn't take my eyes off E-man, I kept hugging and kissing him. Trying to explain to him that he had to stay home where it was safe. He would smile at me, hugging me back. After both kids went to bed I had a complete meltdown. It felt as if the old wound was ripped open again. It feels like we get to a certain point with them and something new happens that kicks us to the ground. I felt helpless and alone. I think I felt even worse about it because I have been keeping up with the news story of the 13 year old autistic boy in New York who walked out of school and has not been found for going on 7 weeks now. For some reason this story has haunted me. So when E-man slipped out fear enveloped me even after he was safe at home. That night I had to keep reminding myself that he was ok, sleeping peacefully in his bed. The what-ifs were plaguing my mind. What if he had gotten farther, what if a car hit him, what if he had drowned, what if he had been taken by someone? I couldn't stop the negative thoughts. It bubbled up and I just cried and cried, Martin holding and comforting me. I was so tired, I AM so tired of worrying.
I guess the good news is that over the years enough scar tissue has built up that when something reminds us yet again in a big way that our lives are different, the recovery time is faster. Let yourself feel bad for a little while, pick yourself up and start troubleshooting. I realized after the commotion that I had forgotten to lock the front door when I got home with the kids that afternoon, so when E-man tried the door he was able to get out. Since LB was having a meltdown, Martin couldn't hear him leave and was obviously occupied. This led us to ordering some door alarms, so now we have the welcoming sounds of a convenience store. Whatever works, right?
Doing some research I found a really great website that provides a tool kit for help in preventing an autistic child from wandering and what to do if an event like that occurs. It feels better to have some information handy, and it discussed figuring out why your child might wander. Some children are fascinated by water or street signs and go looking for them. E-man loves parks and he hates to hear LB crying, so put that together with an unlocked door and he's off.
In total he was gone for maybe 5 minutes, it could have been much worse. I have to keep telling myself that now at least we can work on prevention and vigilance. To use it as a lesson and build a plan that is tailored to keeping him safe. But the worry is there, it will always be there.
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