Exhausted from parenting/ASD children/Welcome to Schmolland!

[Earstou]

Well, I've kinda been MIA here due to my own health problems, but I want to tell everyone some stuff that really rocks!
We had not told ds that he is aspergers, his doctor told him once, but he had a meltdown and didn't remember afterwards. I was told it must be traumatic for him, so we didn't push it. Seeing as he is almost grown and gone, I thought he should know, so I've been talking about different people we know who have it. One day he asked us, "Is that what I have?". So we talked about Aspergers, the scientist we know that has it, his sons my ds has played with in the past. I could tell he was a little uncomfortable. I then told him that his dad and I probably both have, and the look on his face was priceless, everything was then okay! Mentioning his dad and I made aspergers into a common everyday thing, instead of some mystery condition to worry about!
He came home from school a few days later, and tells us he was reading online about aspergers and it talked about kids having special interests. He then asks me if I know if so-and-so is an aspie, because the boy had told him how many bolts hold the wheels onto ds' car. Ds says "It's MY car, and I don't even know that". (He then went out and took the wheel covers off so that he would know.)

So, I'm just so excited because ds now knows he is an aspie, has accepted it and is doing his own research on it!

The last year has been amazing for him. He has always refused to do any public speaking, including reading book reports in front of his class. He also refused to do math contests, because if you win, you have to WALK across a stage to accept your medal, so just stepping foot on a stage was not acceptable.
Last spring and summer, he volunteered to be in a play and also did some reading at a program. (Mom was sitting in the audience crying!) He also emceed a program and is on a state youth board, where they plan assemblies, and then he stands on stage and leads the youth in these assemblies!

He also occasionally goes out with friends on weekends (I still have to push to get him to do this, but at least he does it!). So he has grown by leaps and bounds lately!
So hang in there everyone, you just never know how far your kids can go!

 

[bookwormde]

Earstou,

Get a copy of Genius Genes by Michael Fitzgerald and Bredan O'Brian. It is a great positive read for young Aspies.

bookwormde

 

[Brightsy]

*whew*
Life sure has gotten busy! I finally got a bunch of services all lined up at appropriate times for DS8! My day planner is full of appt!
It's crazy hectic some times. He's got karate twice a week.
A 45 minute long group speech therapy session once a week. 30 min. PT followed by OT once a week. Scouts twice a month... add on his brother's bi-monthly appt. w/ the counselor and life gets full! And soon I'll hoepfully be adding one a social skills play group for DS8 and maybe one for DS11 (he's got ADHD and anxiety issues, DS8 is autistic). I also want to find a sibs group for DS11, he needs to know he's not alone with all this.
I found out recently that there are no ABAs my insurance covers nearby. Closest listed is 75 miles away. Our OT says she'll try and help w/ this.

Oh, and I joined karate w/ the boys. I just got my orange belt! They're about to get their red belts.

Also, does anyone have any advice/experience w. autistic kids in karate? Our Shihan (chief instructor) has had ADHD kids and a couple of Asperger's kids, but my DS is his first autistic kid. Shihan is doing amazing w/ my son, really, but I think he's trying to figure a few things out. Like how to allow my son to progress best. DS8 is learning, but he's not way learning at the pace the others his age are. Shihan doesn't want to hold my son back from testing, but honestly, he's not going to be able to perform up to standards they way the NT kids do. His PT is helping us w/ this too. His OT is even helping DS learn to tie his belt on his own.

 

[bookwormde]

If your insurance company has no providers withing a reasonable distance they must let you go out of network. If the providor charges more than the allowable fee you may have to pay the difference. Call the service coordinator for your insurance compay and "have a talk"

And yes things do get busy, and at times we have to pick what is most important if our kids get overlaoded.

bookwormde

 

[Brightsy]

Thanls for the reminder Bookwormde, I'd forgotten I have other options.
Of course you're also right about being overloaded. W/ our schedules right now cramming ABA in might be too much for him. The lad does need some downtime and the oppurtunity to be just a kid.

 

[lovethattink]

I am so glad I found this thread! I am exhausted and so glad I am not alone!! He had his first seizure, very bad one, on Father's Day. This led to a summer filled with all kinds of neurological testing. My son is 6 years old and was just diagnosed this summer, with a whole myriad of diagnosis'. He has Cortical Dysplasia, Epilepsy, Aspergers, and ADHD. I am treading on new territory, finding a new normal, and some days I feel like I am sinking fast, so I tread more!

 

[Nik's Mom]

I am so glad I found this thread! I am exhausted and so glad I am not alone!! He had his first seizure, very bad one, on Father's Day. This led to a summer filled with all kinds of neurological testing. My son is 6 years old and was just diagnosed this summer, with a whole myriad of diagnosis'. He has Cortical Dysplasia, Epilepsy, Aspergers, and ADHD. I am treading on new territory, finding a new normal, and some days I feel like I am sinking fast, so I tread more!

Sorry you are going through a tough time. Sometimes it can be so hard to deal with. Just hang in there though. Try to find things to laugh at. Laughter is the best medicine.

 

[Emagine]

It has been a long time since I came to this thread but I wanted to offer some big old hugs to all the Parents! Together we will make it!

I thought I would update you guys on my 2. We have finally settled down into a decent Homeschool Routine and I *think* I have learned the learning styles of both. If anyone remembers I went through one heck of a 3 ring circus with a less than compliant school. So this is an accomplishment. I have also learned when they said DS was not capable they prob never tried. I have seen pretty good marks lately from him.

Socially both still have huge issues. I am trying hard to combat that by being involved in groups for homeschoolers and not. I am trying to get them exposed so they can be around peers and perhaps learn and grow more then in the confined 4 walls at home.

DS 8 still is having melts easily though. Poor guy, the least little thing gets him and as he has grown those outburst get louder. Any one else there?

My youngest is doing good lesson wise but in other areas he is lacking. Sometimes I do not know how much comprehension he gets from things and how far he understands something. I am still learning as he will be 5 in Dec and does talk so much better then my other.

Luckily for me I have connected with some other moms in the area with the Autism Groups and HS groups so I am finally getting out. I took on Zumba. How fun that is but I still can not dance lol.

I have finally grown a tough skin to the folks around me and choose to laugh over crying on the bad days. If I am taken to tears on those not so good days then I usually wait till they are not around.

These days I look at the Disney countdown on the wall and think Vacation is almost here and I am one day closer lol.

 

[lovethattink]

Sorry you are going through a tough time. Sometimes it can be so hard to deal with. Just hang in there though. Try to find things to laugh at. Laughter is the best medicine.

Thanks for the encouragement! I do try to find the positives, because the negatives can be overwhelming. I do laugh. I have always enjoyed a challenge and this is certainly a big challenge!

I am learning to chose my words before I speak. Since ds's world is only black and white with no gray, I am learning not to use idioms, slang, or joking with him. I still chuckle remembering asking him to "spit it out" when he kept saying um, um, um, um. So he turned around and spit on the ground, and answered, "well, that didn't help."

 

[lovethattink]

It has been a long time since I came to this thread but I wanted to offer some big old hugs to all the Parents! Together we will make it!

I thought I would update you guys on my 2. We have finally settled down into a decent Homeschool Routine and I *think* I have learned the learning styles of both. If anyone remembers I went through one heck of a 3 ring circus with a less than compliant school. So this is an accomplishment. I have also learned when they said DS was not capable they prob never tried. I have seen pretty good marks lately from him.

Socially both still have huge issues. I am trying hard to combat that by being involved in groups for homeschoolers and not. I am trying to get them exposed so they can be around peers and perhaps learn and grow more then in the confined 4 walls at home.

DS 8 still is having melts easily though. Poor guy, the least little thing gets him and as he has grown those outburst get louder. Any one else there?

My youngest is doing good lesson wise but in other areas he is lacking. Sometimes I do not know how much comprehension he gets from things and how far he understands something. I am still learning as he will be 5 in Dec and does talk so much better then my other.

Luckily for me I have connected with some other moms in the area with the Autism Groups and HS groups so I am finally getting out. I took on Zumba. How fun that is but I still can not dance lol.

I have finally grown a tough skin to the folks around me and choose to laugh over crying on the bad days. If I am taken to tears on those not so good days then I usually wait till they are not around.

These days I look at the Disney countdown on the wall and think Vacation is almost here and I am one day closer lol.

I am homeschooling this year for the first time ever! What curriculum are you using? I am using Abeka kindergarten DVD school with my 6 year old. And Alpha Omega's Switched On with the highschooler.

I am sorry his outbursts have gotten louder. That is one of my fears with my son. We began family counselling for his frustrations, outbursts, fears, and hurting himself. We had our first session 2 weeks ago, and we are seeing some improvement.

How will your children handle the changes at Disney? We hadn't been to the MK in a while. We went to Fantasyland and the pardon the pixie dust walls, freaked him out. We were heading to Winnie the Pooh, when he suddenly tore off running. Thank God the park was empty. I caught up with him at Dumbo. He was crying hysterically and scared as all get out. I told him he has to talk to me because I don't understand why he ran. He said the walls don't belong there, they scare him.

I convinced him to walk with me to the CM and we would ask her if the ride changed. If she said it changed we wouldn't go on it, we would walk away. But if it was the same, then we would get in line. She saw his GAC and took the time to talk to him. She explained it was the same. We got in line, but right away he was ready to bolt again, because the queue formation had changed. He made it, reluctantly and slowly, to the ride platform and saw the rest was the same and was he was ok. People around us, thought we were nuts!

That's great you are doing zumba. I stopped zumba this summer when everything came to a head. I miss it. Don't worry about the dance moves. As long as you keep moving, that's what counts! I went from a size 14 to an 8 just doing zumba and no diet! And I felt like I had more energy.

 

[Emagine]

I am homeschooling this year for the first time ever! What curriculum are you using? I am using Abeka kindergarten DVD school with my 6 year old. And Alpha Omega's Switched On with the highschooler.

I am sorry his outbursts have gotten louder. That is one of my fears with my son. We began family counselling for his frustrations, outbursts, fears, and hurting himself. We had our first session 2 weeks ago, and we are seeing some improvement.

How will your children handle the changes at Disney? We hadn't been to the MK in a while. We went to Fantasyland and the pardon the pixie dust walls, freaked him out. We were heading to Winnie the Pooh, when he suddenly tore off running. Thank God the park was empty. I caught up with him at Dumbo. He was crying hysterically and scared as all get out. I told him he has to talk to me because I don't understand why he ran. He said the walls don't belong there, they scare him.

I convinced him to walk with me to the CM and we would ask her if the ride changed. If she said it changed we wouldn't go on it, we would walk away. But if it was the same, then we would get in line. She saw his GAC and took the time to talk to him. She explained it was the same. We got in line, but right away he was ready to bolt again, because the queue formation had changed. He made it, reluctantly and slowly, to the ride platform and saw the rest was the same and was he was ok. People around us, thought we were nuts!

That's great you are doing zumba. I stopped zumba this summer when everything came to a head. I miss it. Don't worry about the dance moves. As long as you keep moving, that's what counts! I went from a size 14 to an 8 just doing zumba and no diet! And I felt like I had more energy.

I failed with following a straight curriculum that was a one stop source. It was hard to admit defeat but I had to un-school him then learn his learning style. I finally figured out he was an Immersion type of learner and this worked best. So I revamped into a mix and match.

We do year round so not all of these are in one day.
Geography - he loved 'A Child's Geography' by Jeannie Fullbright (we did this in the summer and he loved it and I knew Immersion was for him. He does so much better in a single subject studying all he can before moving on to the next. Ex : all you can about Mars before going to Saturn.

Math - he is very visual so we chose the Teaching Textbooks Series. This is one of his strengths so its easy for him with the lessons they do.

Lang Arts, Grammer and Such - He loves Time4Learning so we use that but I supplement with extra writing as his is pretty bad. Both my boys love 'Draw Write Now' for that part and they think its fun. I am focusing on phonics at this point more than nouns and verbs due to the delay in reading.

Reading -We love Weekly Reader, remember those as a kid? They do them for HS now too. He thinks it is fun to use them. We also signed up for the BOOKIT Pizzahut program online where kids get a small free pizza with reading so he likes that goal.

Science I have to have plenty of. DS 8 craves it and again its Immersion based and very hands on. We are doing the Astronomy Book in the Apologia line. Totally love it and the hands on science of it really makes things stick.

That is the 'core' of the structure for now. But I am sure someday we will have to change again lol.

As for Disney I can not let him up and wonder around as he is a runner as well. Prob is his stamina and such does not hold up. He will also not answer when called. We have always used a stroller (double) for both since both have their own little personalities so to speak to the spectrum. When he was in PS they lost my baby 2 times so he does not get out of my sight. As for the changes of the parks, I hope there is no issue there. I just hope they remain carefree and full of delight with that one. Someday I hope to do the shows and more parades. We can not do those

 

[lovethattink]

Emagine, sending you a pm about homeschooling.

I sure hope that one day you will get to see the shows and parades!

 

[iwrbnd]

Thanks for the encouragement! I do try to find the positives, because the negatives can be overwhelming. I do laugh. I have always enjoyed a challenge and this is certainly a big challenge!

I am learning to chose my words before I speak. Since ds's world is only black and white with no gray, I am learning not to use idioms, slang, or joking with him. I still chuckle remembering asking him to "spit it out" when he kept saying um, um, um, um. So he turned around and spit on the ground, and answered, "well, that didn't help."

Oh my goodness! I LOVE the spit story!Life in Schmolland is never dull! (Even if we want it to be sometimes!)

 

[toodycat]

Hi all. Hope things are well in Schmolland. I haven't checked in a while because work has been non-stop and DS's homework is taking up a lot of time. Plus, we were at WDW for a long weekend. We've been going to WDW for about 10 or 11 years with DS and this time he said something really bittersweet. We were heading to the AKL in a rented convertible Mustang, DH and I really happy to be getting away, the Florida evening weather beautiful and DS said, "I wish I wasn't missing the fun at school." Part of me wanted to give him a rant and tell him lots of kids would give their eyeteeth for a weekend at WDW and missing a day of school, but on the flip side, he said school was fun [/I]and you usually don't have fun without other people. We had an amazing trip and DS LOVED Mickey's Not-So-Scary-Halloween party. He is a big Tim Burton fan and there were lots of references to Jack Skellington and others. The other good news is that he made it through the weekend earplug free! He covered his ears during the fireworks, but otherwise he was fine. DH got a camera for his birthday and I will post photos once he culls through the 500+ shots he took! Enjoy the weekend, everyone!

 

[kampfirekim]

I am so glad I found this thread! I am exhausted and so glad I am not alone!! He had his first seizure, very bad one, on Father's Day. This led to a summer filled with all kinds of neurological testing. My son is 6 years old and was just diagnosed this summer, with a whole myriad of diagnosis'. He has Cortical Dysplasia, Epilepsy, Aspergers, and ADHD. I am treading on new territory, finding a new normal, and some days I feel like I am sinking fast, so I tread more!

Welcome aboard Schmolland's Crazy Train. You're probably already discovering that this is one of the most supportive bunch you'll ever find. Glad to have you among us.

...and I LOVE the spit story! Hilarious!

Hi all. Hope things are well in Schmolland. I haven't checked in a while because work has been non-stop and DS's homework is taking up a lot of time. Plus, we were at WDW for a long weekend. We've been going to WDW for about 10 or 11 years with DS and this time he said something really bittersweet. We were heading to the AKL in a rented convertible Mustang, DH and I really happy to be getting away, the Florida evening weather beautiful and DS said, "I wish I wasn't missing the fun at school." Part of me wanted to give him a rant and tell him lots of kids would give their eyeteeth for a weekend at WDW and missing a day of school, but on the flip side, he said school was fun [/I]and you usually don't have fun without other people. We had an amazing trip and DS LOVED Mickey's Not-So-Scary-Halloween party. He is a big Tim Burton fan and there were lots of references to Jack Skellington and others. The other good news is that he made it through the weekend earplug free! He covered his ears during the fireworks, but otherwise he was fine. DH got a camera for his birthday and I will post photos once he culls through the 500+ shots he took! Enjoy the weekend, everyone!

Hey Toodycat! Don't feel bad about not checking in in a while, I haven't either. Life has been soooo busy lately! That's great news your DS thinks school is fun! Now there's progress for ya! Can't wait to see the WDW pics and I'm so glad you had a great trip!

DS has drug us kicking and screaming back into the heartland of Schmolland! He's that 8th dwarf no one wants to talk about....Stimmy! He's physically wearing me out! Pulling, tugging, climbing all over me 24/7. I do declare it's like living with an autistic monkey! Hoping his Clonidine works it's magic soon or I'm going off the deep end! This T-totaler is considering taking up drinking...J/K, sort of.

.....and I was looking forward to a 4 day weekend because...?????

 

[conwrightnie]

Nice to find this thread. I am actually very new to this forum thing. I found it because we are going on a disney cruise in a year. I have to find out everything about the cruise for my 15 year old son who has HFA. Many of the posts ring true. I am glad that I don't have to go through the younger years with him again. They were pretty dark, but they did have some bright gleaming spots sprinkled in like glitter. He is the oldest of my 5 children. Developmentally, he is about on par with my 10 year old. He started High School this year and is finally doing well. Hopefully we will get to stay here through his HS years and he will graduate from a program where people know him and actually care if he succeeds or not. We will see what the military does with us!
Just a message of hope to all of you out there. Hang on. Find the joy--that one moment in the day that something good actually happened--and hold on to it. Gather those sparkles--write them down if you have to and look back on them when things get tough. You were chosen for this and you have the strength to not only get through, but to help the child which was given to you. You can give in (like letting him watch that movie forward, backward and upside down for the 10th time in a row), but never give up!

 

[lovethattink]

Thanks for the welcome!

Life in Schmolland, certainly never a dull moment. I just want to say that I love Disney, and I just love the new Duffy bear!!! It was THE BEST purchase I have ever made at WDW. Bought one this weekend. DS(6) carried it around at the AK on Saturday, and DHS on Sunday. It sparked lots of conversation with cast members! Little did I know that ds would end up in the hospital last night. I grabbed Duffy and his favorite Star Wars blanket and off we went to the ER.

Well, the room was too cold, the tape was too sticky, the bed was too hard, the nurses smelled icky. The toys were too far, the light was too bright, the noises too loud, but Duffy felt right!

 

[kampfirekim]

Nice to find this thread. I am actually very new to this forum thing. I found it because we are going on a disney cruise in a year. I have to find out everything about the cruise for my 15 year old son who has HFA. Many of the posts ring true. I am glad that I don't have to go through the younger years with him again. They were pretty dark, but they did have some bright gleaming spots sprinkled in like glitter. He is the oldest of my 5 children. Developmentally, he is about on par with my 10 year old. He started High School this year and is finally doing well. Hopefully we will get to stay here through his HS years and he will graduate from a program where people know him and actually care if he succeeds or not. We will see what the military does with us!
Just a message of hope to all of you out there. Hang on. Find the joy--that one moment in the day that something good actually happened--and hold on to it. Gather those sparkles--write them down if you have to and look back on them when things get tough. You were chosen for this and you have the strength to not only get through, but to help the child which was given to you. You can give in (like letting him watch that movie forward, backward and upside down for the 10th time in a row), but never give up!

Welcome! You will find this group to be supportive and full of good humor. Feel free to share the good, the bad and the ugly. We're all ears!

BTW, thanks for the encouraging words.....and you are sooo right!

Thanks for the welcome!

Life in Schmolland, certainly never a dull moment. I just want to say that I love Disney, and I just love the new Duffy bear!!! It was THE BEST purchase I have ever made at WDW. Bought one this weekend. DS(6) carried it around at the AK on Saturday, and DHS on Sunday. It sparked lots of conversation with cast members! Little did I know that ds would end up in the hospital last night. I grabbed Duffy and his favorite Star Wars blanket and off we went to the ER.

Well, the room was too cold, the tape was too sticky, the bed was too hard, the nurses smelled icky. The toys were too far, the light was too bright, the noises too loud, but Duffy felt right!

That is so precious. Love it!

 

[Nik's Mom]

Welcom to the new members of our group.
I have my youngest son's IEP today. I'm anxious to hear what they have to say. I'm fortunate that the teachers and therapists do an amazing job. But I still get nervous before an IEP. For years, I would walk out of those meetings in tears. It is so hard to hear bad news about your child.

That thread on the community board yesterday had me so angry. I cannot believe some of the things people were saying about children with special needs.

If anyone needs any inspiration, please read this about Poppin Joe's popcorn. It is a business started by a person with down syndrome and autism. http://poppinjoes.com/about_us
Here is another story about him. http://health.usnews.com/health-new...how-1-autistic-young-man-runs-a-business.html

 

[Kat77]

Hello All and Welcome to our newbies (and lurkers). It's been quiet! How is everyone? Time for roll call!

NiksMom- I know... that thread was rough.

Kim- Has the clonidine kicked in?

DS10 is loving the Aspie program. The teachers ! It has been really, really good this year. I am glad we caught a break, last year he had such a hard time coping I was stressing about making it though intermediate school. We moved DD11 to the school, giving her a clean slate to start over from and she is doing great too!

I helped host the monthly teachers luncheon on Tuesday. None of our special ed teachers had time to break away Loaded up a platter of goodies for them and told them next time I will text over photos and they can send me their choices and I'll make deliveries.