Exhausted from parenting/ASD children/Welcome to Schmolland!

[ashley0139]

Hi everyone. I am a 22 year old living in NYC (with no children) and just read all 48 pages of this thread so far. I have learned so much from all of you and have really enjoyed reading about and cheering for your children. I have no connections to autism myself (except for an unrelated gluten intolerance) but have always been interested in learning more about it.

I actually just finished reading a book called "The Curious Incident of the Dog in the Night-Time." It is a book written from the perspective of a 15 year-old with Asperger's. It is very interesting and gives people who do not think that way an insight into the thought process.

I just wanted to share my thoughts with you all. Thanks for the inspiring thread!

 

[toodycat]

Thanks Ashley! I wish more people were willing to educate themselves about autism.

 

[bookwormde]

Our kids lives would be easy if every one took the time to learn about Autism then you

bookwormde

 

[toodycat]

A bit of a conundrum, but also a proud moment. DS did not like camp. He was enrolled in "Video as Film Art" and wanted to be involved in the tech side of things, but found himself in a film theory class worthy of NYU Film School. He was also dissatisfied with the guitar part of his day because the teacher wanted to start everyone at the beginning and DS has been taking lessons for two years. He texted me and said he didn't like it; it was too much like "band camp." LOL Then, he texted to say he was bringing his guitar home which translated to: I am not coming back, so why leave stuff in my locker here? You can never accuse an ASD kid of not being practical.

The reason I am proud is that DS is the very opposite of willful. He is not the kind of guy who tantrums or has meltdowns when he doesn't want to to something; he is the sort who doesn't say anything! He is also always willing to give something a fair try. For him to text me and say he was unhappy means he was mature and aware of his own feelings enough to tell me. The psychologist had told us that DS doesn't always feel in control of his own life, so I had been talking to him about speaking up more when he is uncomfortable. The decision to leave camp is more personal growth than he would have gotten out of 7 weeks of camp. I was proud of him, but also freaking out a little because the camp had nearly $5000 of our tuition money. Luckily, the registrar said she understood the program was not for everyone. She refunded all but my $500 deposit which is fine.

Now, the question is what does DS do for the summer? He is an only child without a friend network. I am in the odd position of shopping for summer programs on June 30th! Last year's camp in Maine will take him back for a "specialty" week, but he thinks Maine is too far to travel for a single week. Also, even though he enjoyed Maine and came back a more mature kid, he missed me terribly. Most of the computer camps around here are booked up already. A local college is offering film making and audio engineering for teens, so we may look at that. I know he wants to spend the summer playing video games, swimming in our pool,watching youtube and reading the biographies of rock stars, but he has to interact with some peers, too. I am also thinking of sailing camp because he HAS to interact with others there. You can't sail a boat without a lot of cooperation. Wish me luck...

 

[kampfirekim]

Hi everyone. I am a 22 year old living in NYC (with no children) and just read all 48 pages of this thread so far. I have learned so much from all of you and have really enjoyed reading about and cheering for your children. I have no connections to autism myself (except for an unrelated gluten intolerance) but have always been interested in learning more about it.

I actually just finished reading a book called "The Curious Incident of the Dog in the Night-Time." It is a book written from the perspective of a 15 year-old with Asperger's. It is very interesting and gives people who do not think that way an insight into the thought process.

I just wanted to share my thoughts with you all. Thanks for the inspiring thread!

.....and thank you for the encouraging words. Wish more people would take the time to learn more about autism. It would certainly make like easier for us and them as well. I met the lovliest teacher and her family at Disney Studios last year. While they had no autistic relatives, the teacher worked w/an autistic boy after school and recognized the autistic traits in my DS. They were so understanding and kind to us. We chatted all the way through the meet and greet line for Woody and Buzz. They even let us go ahead of them when it was their turn.

The reason I am proud is that DS is the very opposite of willful. He is not the kind of guy who tantrums or has meltdowns when he doesn't want to to something; he is the sort who doesn't say anything! He is also always willing to give something a fair try. For him to text me and say he was unhappy means he was mature and aware of his own feelings enough to tell me. The psychologist had told us that DS doesn't always feel in control of his own life, so I had been talking to him about speaking up more when he is uncomfortable. The decision to leave camp is more personal growth than he would have gotten out of 7 weeks of camp. I was proud of him, but also freaking out a little because the camp had nearly $5000 of our tuition money. Luckily, the registrar said she understood the program was not for everyone. She refunded all but my $500 deposit which is fine.

Now, the question is what does DS do for the summer? He is an only child without a friend network. I am in the odd position of shopping for summer programs on June 30th! Last year's camp in Maine will take him back for a "specialty" week, but he thinks Maine is too far to travel for a single week. Also, even though he enjoyed Maine and came back a more mature kid, he missed me terribly. Most of the computer camps around here are booked up already. A local college is offering film making and audio engineering for teens, so we may look at that. I know he wants to spend the summer playing video games, swimming in our pool,watching youtube and reading the biographies of rock stars, but he has to interact with some peers, too. I am also thinking of sailing camp because he HAS to interact with others there. You can't sail a boat without a lot of cooperation. Wish me luck...

I'm so sorry that you lost sooo much money! That's rough! But I do agree that his finding the ability to take control and let you know he wasn't enjoying camp was indeed a personal triumph for him. One of those life lessons that just may have been worth the money.

Here's my wishing you luck w/ sailing camp......GOOD LUCK TOODYCAT AND DS!

Now for a KFK update:

Last evening was the last day of Buddy Soccer. If you listen carefully, you just might be able to hear the angels singing......

On our way the rain started coming down in sheets! Then it stopped...then it started etc. You get the idea. I seriously considered turning around, going back home and calling it a day. Wish I had!

We got there ...late. The game had already started so I left my purse and chair with a friend and went to find a buddy for DS. Then he bolted. Luckily they changed locations just to accomodate DS's running/escaping abilities. We should be OK. NOT! Not one entrance was closed off! None...nada...zero..zilch. There were approximately 6 opportunities of escape. Two of those were right on the main highway through town. Two led back to the parking lot w/no fencing to prevent him from running into the highway. The remaining two openings led into other smaller streets w/ lots of neighborhoods! The game is already in progress. I don't see anyone ready to help, so I kick off my shoes and we're off! Yep, you guessed it, Kentucky Derby style! After I grab DS and start walking him back....his buddy was there to take him. Whew! I plop down in my chair and settle in to relax for the remainder of the game. NOT! After about 15 minutes here comes the rain! I must have brought it with me. The planned pizza party had to be moved inside the Activities Center. I have NT/DS with me and since I do not see schmutcher, I know that his buddy has him and assumed that they had gone on inside for the pizza party. When I get outside the gate going towards the parking lot, remember the one w/no fencing and total access the main highway downtown, I see DS with his buddy. Ok, she has him. I'll go move the car closer to the activities center and we'll met them inside.....NOT. DS sees me and buddy asks, "You got him?" Before I can answer she turns him loose.... ARE YOU KIDDING ME! PLEASE TELL ME THIS IS SOME SORT OF COSMIC SICK JOKE! Yep, you guessed it! He bolted straight through the parking lot towards the road! Mind you I am wearing slip on sandals, I have a folding chair and a purse strapped to my shoulder and another DS by the hand. Buddy then asks me, "You got him or do you want me to get him?" WHAT!? SERIOUSLY!? By this time he has quite an advantage and has gotten a good distance away. So rather than burst into flames and debate who should go get him...I bolt after him. Lucky I didn't break my neck. Who can run in the position I was in? I guess buddy felt a little guilty and ran along the grass parallel w/the road and finally caught him. I took DS firmly by the hand....and firmly let her know that you can absolutely NOT let go of him in an open area like that! KFK was HOT, but decided not to make a formal complaint. All was well so I just let this one go.

Now we get to the pizza party. All went well there. DS' both behaved like little gentlemen. They ate their pizza and watermelon and DS even let me walk him up to receive his trophy. Now it's time to go. My friend, her two boys (one smutcher, one ADHD), my two boys and I head for the door. Pouring down rain...monsoon style, lighting striking seriously close. We're stuck...in an activities center....with a million hallways for DS to bolt down. Each had it's own door to the outside! I decide to go outside and wait under the giant, safe covered area. The boys all seemed calmer outside. Good, I'll wait here. DS decides to bolt again! Not on my watch dude! I chased him and just caught him by the hair has he got to the edge of the parking lot. He stopped cold. Good. No more bolting attempts. The rain let up a little so I make the decision....we're making a break for it. I will add that my friends DS got quite dramatic about that decision. He grabbed my oldest DS around the waist and held him tight saying, "I love you and I don't want you to diiiieee!!!!!!" We run for it! As we're getting into the car the lightning is striking very close! Not being one prone to very much fear...I was gettin' nervous. Maybe it wasn't such a good idea to be putting kids in carseats while standing ankle deep in water during a lightning storm. Won't be doing that again. Bad plan. We did make it safe and sound. PTL! When we got home the storm had already passed and we had blue skies!

Never dull...never ever dull! Unless DS makes great strides this year or things are ran a little differently, there will be no Buddy soccer for us next year.

 

[toodycat]

.....and thank you for the encouraging words. Wish more people would take the time to learn more about autism. It would certainly make like easier for us and them as well. I met the lovliest teacher and her family at Disney Studios last year. While they had no autistic relatives, the teacher worked w/an autistic boy after school and recognized the autistic traits in my DS. They were so understanding and kind to us. We chatted all the way through the meet and greet line for Woody and Buzz. They even let us go ahead of them when it was their turn.



I'm so sorry that you lost sooo much money! That's rough! But I do agree that his finding the ability to take control and let you know he wasn't enjoying camp was indeed a personal triumph for him. One of those life lessons that just may have been worth the money.

Here's my wishing you luck w/ sailing camp......GOOD LUCK TOODYCAT AND DS!

Now for a KFK update:

Last evening was the last day of Buddy Soccer. If you listen carefully, you just might be able to hear the angels singing......

On our way the rain started coming down in sheets! Then it stopped...then it started etc. You get the idea. I seriously considered turning around, going back home and calling it a day. Wish I had!

We got there ...late. The game had already started so I left my purse and chair with a friend and went to find a buddy for DS. Then he bolted. Luckily they changed locations just to accomodate DS's running/escaping abilities. We should be OK. NOT! Not one entrance was closed off! None...nada...zero..zilch. There were approximately 6 opportunities of escape. Two of those were right on the main highway through town. Two led back to the parking lot w/no fencing to prevent him from running into the highway. The remaining two openings led into other smaller streets w/ lots of neighborhoods! The game is already in progress. I don't see anyone ready to help, so I kick off my shoes and we're off! Yep, you guessed it, Kentucky Derby style! After I grab DS and start walking him back....his buddy was there to take him. Whew! I plop down in my chair and settle in to relax for the remainder of the game. NOT! After about 15 minutes here comes the rain! I must have brought it with me. The planned pizza party had to be moved inside the Activities Center. I have NT/DS with me and since I do not see schmutcher, I know that his buddy has him and assumed that they had gone on inside for the pizza party. When I get outside the gate going towards the parking lot, remember the one w/no fencing and total access the main highway downtown, I see DS with his buddy. Ok, she has him. I'll go move the car closer to the activities center and we'll met them inside.....NOT. DS sees me and buddy asks, "You got him?" Before I can answer she turns him loose.... ARE YOU KIDDING ME! PLEASE TELL ME THIS IS SOME SORT OF COSMIC SICK JOKE! Yep, you guessed it! He bolted straight through the parking lot towards the road! Mind you I am wearing slip on sandals, I have a folding chair and a purse strapped to my shoulder and another DS by the hand. Buddy then asks me, "You got him or do you want me to get him?" WHAT!? SERIOUSLY!? By this time he has quite an advantage and has gotten a good distance away. So rather than burst into flames and debate who should go get him...I bolt after him. Lucky I didn't break my neck. Who can run in the position I was in? I guess buddy felt a little guilty and ran along the grass parallel w/the road and finally caught him. I took DS firmly by the hand....and firmly let her know that you can absolutely NOT let go of him in an open area like that! KFK was HOT, but decided not to make a formal complaint. All was well so I just let this one go.

Now we get to the pizza party. All went well there. DS' both behaved like little gentlemen. They ate their pizza and watermelon and DS even let me walk him up to receive his trophy. Now it's time to go. My friend, her two boys (one smutcher, one ADHD), my two boys and I head for the door. Pouring down rain...monsoon style, lighting striking seriously close. We're stuck...in an activities center....with a million hallways for DS to bolt down. Each had it's own door to the outside! I decide to go outside and wait under the giant, safe covered area. The boys all seemed calmer outside. Good, I'll wait here. DS decides to bolt again! Not on my watch dude! I chased him and just caught him by the hair has he got to the edge of the parking lot. He stopped cold. Good. No more bolting attempts. The rain let up a little so I make the decision....we're making a break for it. I will add that my friends DS got quite dramatic about that decision. He grabbed my oldest DS around the waist and held him tight saying, "I love you and I don't want you to diiiieee!!!!!!" We run for it! As we're getting into the car the lightning is striking very close! Not being one prone to very much fear...I was gettin' nervous. Maybe it wasn't such a good idea to be putting kids in carseats while standing ankle deep in water during a lightning storm. Won't be doing that again. Bad plan. We did make it safe and sound. PTL! When we got home the storm had already passed and we had blue skies!

Never dull...never ever dull! Unless DS makes great strides this year or things are ran a little differently, there will be no Buddy soccer for us next year.

OMG. What a rough time. So sorry to hear you had to go through that nerve wracking day. Maybe the Buddy Soccer people should consider having games indoors in a local gymnasium or something like that? The possibility of elopement is not healthy for parents or kids! Plus, they are leaving themselves wide open for a lawsuit. My DS doesn't escape but he would have been freaking out just based on the weather. He has a serious fear of thunder and lightning. I hope you got a chance to rest, calm down and have a hot fudge sundae or a mojito or whatever your substance of your choice is after such a harrowing nightmare!

Camp situation is partially resolved. DS starts a recording studio engineering course for high school students on Monday. He looked much more at home and comfortable in a room with a sound board, a nice big piece of technology to learn to operate. He is seriously considering going back to specialty camp for a week as well.

 

[iwrbnd]

Hi everyone. I am a 22 year old living in NYC (with no children) and just read all 48 pages of this thread so far. I have learned so much from all of you and have really enjoyed reading about and cheering for your children. I have no connections to autism myself (except for an unrelated gluten intolerance) but have always been interested in learning more about it.

I actually just finished reading a book called "The Curious Incident of the Dog in the Night-Time." It is a book written from the perspective of a 15 year-old with Asperger's. It is very interesting and gives people who do not think that way an insight into the thought process.

I just wanted to share my thoughts with you all. Thanks for the inspiring thread!

Thanks for the support! I also read that book and found it very interesting!

kampfirekim, all I can say is "OH MY GOODNESS!" You have the patience of Job and an amazing outlook on life! I would have been in tears! As you know, I get "exhausted from parenting" when my days go that way!

toodycat, that's awesome that your son stood up for what he wants/needs! The camps offered in your area sound great! I live in a small town and those things just aren't available. We mostly have sports type of camps and that is not what my DS needs or wants. So, I feel guilty because he's doing all the things you mentioned...swimming, nintendo, computer...luckily he does have some neighborhood buddies that he hangs out with.

I hope everyone has a great day today. Things are quiet in my part of Schmolland. Without the stress of school we do pretty good!

 

[kampfirekim]

kampfirekim, all I can say is "OH MY GOODNESS!" You have the patience of Job and an amazing outlook on life! I would have been in tears! As you know, I get "exhausted from parenting" when my days go that way!

toodycat, that's awesome that your son stood up for what he wants/needs! The camps offered in your area sound great! I live in a small town and those things just aren't available. We mostly have sports type of camps and that is not what my DS needs or wants. So, I feel guilty because he's doing all the things you mentioned...swimming, nintendo, computer...luckily he does have some neighborhood buddies that he hangs out with.

I hope everyone has a great day today. Things are quiet in my part of Schmolland. Without the stress of school we do pretty good!

Don't feel bad, I get exhausted too...and believe me when I say that I definitely have my moments! As far as patience goes...I'm not quite to Job status yet, but as the verse says..."tribulation works patience". I guess I'm just getting a lot of patience "training". Definitely learning to have a sense of humor about EVERYTHING helps. (Sometimes, I do have inappropriate laughter because I have found humor in stuff that others just do not find funny.) Does that put me on the spectrum somewhere? I have jokingly told my FB friends that I have lost all sense of self consciousness and pride.


I also live in a small town, sandwiched between two med/large towns, but there aren't very many camps for s/n kids near us either. Most things offered are in Columbia, SC which is a 1 hour drive away plus the time it would take to fight traffic to get to my destination within Columbia. I would consider the drive if it were something really great, but I just haven't heard of anything that I think would be worth the drive for us.

I also wanted to share that we met my parents and brother at the beach where they were camping and had a wonderful day with them yesterday. Both DS' LOVE the beach and both rode the waves for hours. Too bad we're not merpeople....I'd never have a prob in Schmolland if we were! The Little Mermaid got to be a person.....so why can't we be merpeople?

 

[toodycat]

Good news. Just back from the audiologist. DS's hearing is 100% normal. They said they could test him for APD but it probably wouldn't change the services and accommodations he receives, so it isn't really necessary.

KFK--I totally would have wanted to be a merperson when I was a kid. I love the beach and the waves. We're looking forward to seeing the beach from your perspective this summer when we visit my in-laws at their timeshare in Hilton Head. It should be fun!

iwrbnd--- We are really blessed to live where we do. There are two autism centers within an hour's drive of our home and many more in NYC which is also about an hour away. Long Island has a lot of day camps and summer programs. The one my son is attending is at a local college. He has also decided to go back to summer camp in Maine for a week. Here's the kicker. Camp starts and ends on a weekday and DH, who is a consultant, can't take off work to drive back and worth without losing a lot of pay. I can't drive 8 hours by myself and DS calls the 8 hour drive "the ride from hell." Thus, he will be flying to Maine by himself and having a representative from the camp meet him and drive him back. DS has been on a plane easily 20-30 times, but always with me by his side. He seems quite confident that he can do it and he's probably right, so I don't want to undermine him. Nonetheless, I am going to be a basket case until his mission is completed.

Enjoy the long weekend, everyone!

 

[kampfirekim]

Good news. Just back from the audiologist. DS's hearing is 100% normal. They said they could test him for APD but it probably wouldn't change the services and accommodations he receives, so it isn't really necessary.

KFK--I totally would have wanted to be a merperson when I was a kid. I love the beach and the waves. We're looking forward to seeing the beach from your perspective this summer when we visit my in-laws at their timeshare in Hilton Head. It should be fun!

Enjoy the long weekend, everyone!

Glad to heard DS's ears are OK.

HILTON HEAD?! You're only going to be about 2 1/2 hours from my house! I think you'll like HH, it's a very nice beach and the town is very classy and tasteful. They have ordinances that keep business and their signs in keeping with the low key atmosphere of the island. A lot of beach towns can get a little tacky, but HH is great w/ lots of nice shopping spots too. (Not that I don't enjoy tacky and touristy sometimes too!)

 

[Kat77]

TC,
Don't even allow yourself stress over the plane, with that many flights under his belt, your guy can handle this one! My kids have been flying nonrev their entire lives and we've been splitting apart from each of them on flights since first or second grade. That's right folks, I will seat my children randomly about airplanes and leave them to their own devices but still won't allow them to ride public school buses... how's that for a bizarro world fact of life?! I chuckle when I see threads where adults complain about children on their flights because my kids have some fantastic tales about adults!

 

[Nik's Mom]

Well, I had my talk with oldest ds about being autistic. It went pretty well. He seemed to be happy to hear about the successful autistic people in the world. Thanks to you all for your suggestions and encouraging words!

Have a happy 4th of July!

 

[bookwormde]

Glad the talk went well, it usually help a lot with anxiety in the long run.

bookwormde

 

[kirstenb1]

Nik's Mom, glad it went well.

Our 2 dd's went to Vacation Bible School this week. Our youngest, Zoe, who has ASD did great!! Her class performed onstage at the little outdoor ampitheather, and she actually sang along to the three songs. I constantly go back and forth with her dx. OUr children's hospital dx'd her with high functioning autism. Her EI therapists said she has significant sensory processing disorder. They said she showed communicative intent, so didn't meet ASD criteria. I just dont' know where SPD cuts off, and ASD begins.

She definitely has trouble in groups of children. Too much for her to handle. But the teachers said they would welcome her in their preschool next year. Due to cutbacks, her special ed preschool will have no mainstreaming. I'm trying to cobble together a blend of special ed, and mainstreaming myself. Anyway, we're seeing some really good progress, with a long ways to go.

 

[kampfirekim]

Hope everyone of you have an awesome July 4th!

We've had a nice day today. No wild stories to report!

 

[Daisy&Max]

Happy 4th of July to everyone. I hope it is drama free for everyone!

hugs,
Daisy

 

[sturdypeasantstock]

Ugh, your post is what I'm dreading. I have two boys, oldest one has HFA and probably ADHD too (he's only 5, so not diagnosed yet...). My youngest is 4 and has severe apraxia of speech as well as SPD.

I have NEVER really, truly enjoyed being a mom. I know it sounds awful, but I routinely find myself saying in my head "I hate my life". And, the truth of the matter is, I don't REALLY hate it, but I hate the FACT that my life is SO HARD. DH is military, and is getting ready to leave for his THIRD deployment, leaving me home with the boys alone for the next 7 months (last deployment was for 11 months...). I am dreading it. While I am thankful that they are older this time, I just don't want to do it anymore. I've been SO tired for the past 5 years, and I wonder how I'll be able to do it for another 15+. Seems so daunting because my kids are still SO young, yet it's already so hard. I am a bit hopeful, because they seem to get better as they get older. My HOPE is that they'll both be significantly better in the coming years, but it's just such a murky future.

Some days are good; some days I just want to crawl into bed and stay there. I often wish we'd not had children, but I know in my heart that I really, really wanted kids. I do sort of feel cheated that I got special needs kids instead of "normal" kids, and I'm still trying to work through acceptance and all that. I get mad and jealous of parents of "typical" kids, mostly because I feel like they take their lives for granted. There are so many things my kids will never do, and they're little things, but still... And, NOTHING is ever carefree for us. Everything requires careful planning ahead, scheduling out, etc. The few times I've tried to be spontaneous have blown up in my face, and I know better now.

OP, you are not a horrible person (or else, I am too!). I actually use WDW as my escape too. DH has been so good to let me go THREE times since the kids were born either solo or with my friends. It truly helps to "get away from it all". Maybe you can do that too...you need a break!

I'm glad you said it. I feel cheated too, and I feel like my boys were cheated out of just having the joy of living "normal" lives that so many NTs take for granted. They didn't ask to have disabilities and I feel like NTs don't understand. What I hate most is the comments from NT parents about how the "slow kids" slow down the rest of the class, etc. They say things like that right in front of the boys and me. Ugh!

 

[kampfirekim]

Hey where did everyone go? Was there a mass exodus out of Schmolland I didn't know about?

Maybe the quietness is a good sign all is going well for everyone. I hope so.

DS5 is sick today. He started throwing up last night and started back this morning. Poor thing. If he was gonna get sick anyway this was the best time. We're headed to WDW in 12 days. That should give him plenty of time to recover and enjoy the trip.

 

[jodifla]

Nik's Mom, glad it went well.

Our 2 dd's went to Vacation Bible School this week. Our youngest, Zoe, who has ASD did great!! Her class performed onstage at the little outdoor ampitheather, and she actually sang along to the three songs. I constantly go back and forth with her dx. OUr children's hospital dx'd her with high functioning autism. Her EI therapists said she has significant sensory processing disorder. They said she showed communicative intent, so didn't meet ASD criteria. I just dont' know where SPD cuts off, and ASD begins.

She definitely has trouble in groups of children. Too much for her to handle. But the teachers said they would welcome her in their preschool next year. Due to cutbacks, her special ed preschool will have no mainstreaming. I'm trying to cobble together a blend of special ed, and mainstreaming myself. Anyway, we're seeing some really good progress, with a long ways to go.

I can't remember if I've asked you: Have you seen the film: "Autistic Like: Graham's Story"?

It's about a boy who was misdiagnosed ASD when he really had SPD.

 

[Nik's Mom]

kampfirekim, I'm sorry your ds is sick. I hope he feels better soon! You all have plenty of time if you leave in 12 days. That gives you some time in case the illness travels through the rest of your house. Although, I hope no one else gets sick, just for your sanity.