Exhausted from parenting/ASD children/Welcome to Schmolland!

[bookwormde]

ASD-nos is not a formal diagnosis, it is PDD-nos. For the clinical portion of an Aspergers diagnosis that would be OK if the symptomology was obvious. A PDD-nos is typically given after all other possibilities have been discounted and that should take a lot longer. Your description is classic Aspergers, so if the clinicians picked PDD-nos I would definitely get to a major clinical center for a more appropriate diagnosis. Just be aware that an ADHD diagnosis is often incorrect with kids who are ASD since the different EF system and lack of social throttle often presents very similar although ASD kids can hyper focus in area of special interest (especially with image based input) and the heightened activity is not physiologically based by based on sensory needs. Anxiety disorder secondary diagnosis is the most common co morbidity for ASD kids who have not been diagnosed and supported.

On the practical side keyboarding is a much more important skill than handwriting for our kids, often an OT can help with the fine motor skills which will help some. For math you really need to go back to the beginning and start from the most basic concepts and completely filter out any social content (word problems etc). I have not found any of our mid to high functioning kids who cannot do math well if presented correctly with good EF supports.

If you were surprised by the ASD diagnosis then you need to read (or reread) Tony Attwood's the complete guide to Aspergers.

Glad things are improving, the more knowledgeable you are the easier it will be for your son.

bookwormde

 

[ohana7]

posting because I know this thread will understand. I am exausted by ASD. Been slipping into depression for a long time. Ive now reached a crisis point, and I am clinically drepressed. Spent last two days with metal health team, know i will get better, but ASD is exausting and Ive forgotton to look atfer myself (as if there is time). Parents out there remember you count too. Posting today was part of my therapy.

 

[bookwormde]

We all sometimes cast to broad a net and loose focus on the most important things and wear our selves out. The best support for our children child is a healthy informed parent so make that your priority.

Remember we have all been to a great extent where you are and it does get better.

bookwormde

 

[lovethattink]

disneymom3, my oldest son is 16 with mild CP. The only areas where his CP interferes with day to day activity is balance and hands. His hand writing is atrocious! While we can't see this, his hands are actually having spasms while he writes. It's painful to him and the result is sloppy writing. His grades improved tremendously once he switched to a keyboard. It was recommended he is given oral tests where a key board isn't possible.

 

[lovethattink]

ohana7, thanks for the reminder. My heart goes out to you. Sending pixie dust your way.

 

[Kat77]

posting because I know this thread will understand. I am exhausted by ASD. Been slipping into depression for a long time. Ive now reached a crisis point, and I am clinically drepressed. Spent last two days with metal health team, know i will get better, but ASD is exausting and Ive forgotton to look atfer myself (as if there is time). Parents out there remember you count too. Posting today was part of my therapy.

to Ohana. Welcome! I am glad you posted. We have a wonderful group here.
When my kids were really young and I needed a break but had no mommy friends yet I was known to grocery shop for four hours. No kidding! Have you been to Tesco lately?
Tell us about yourself. How is your support system? How old is your child?

 

[Kat77]

ASD-nos is not a formal diagnosis, it is PDD-nos. For the clinical portion of an Aspergers diagnosis that would be OK if the symptomology was obvious. A PDD-nos is typically given after all other possibilities have been discounted and that should take a lot longer. Your description is classic Aspergers, so if the clinicians picked PDD-nos I would definitely get to a major clinical center for a more appropriate diagnosis. Just be aware that an ADHD diagnosis is often incorrect with kids who are ASD since the different EF system and lack of social throttle often presents very similar although ASD kids can hyper focus in area of special interest (especially with image based input) and the heightened activity is not physiologically based by based on sensory needs. Anxiety disorder secondary diagnosis is the most common co morbidity for ASD kids who have not been diagnosed and supported.

I just assumed DM3 was mixing up the dx's as it was so new to her and she is a bit overwelmed Many of us have both PDD-nos and ASD dx's thrown out simultaneously by doctors. I've never had one use ASD-nos but I have had the right terms used interchangably. If the clinician is mixing them that is very odd.

DM3- The hardest thing for me was learning to tell the professionals no while juggling therapies. We get so many things thrown at us to "work on" at home it is impossible to do it all. Do what you can, the rest can wait. Don't stress over it. If I were a fairy godmother this is the gift I would impart.

 

[ohana7]

Thanks for your . I have two boys one is 7 who is low functioning, and a 10 year old who is higher functioning, both attend a specialist placement. We adopted the boys to give them a second chance at life, but it is so hard. I work full time, look after elderly parents, a my husband is wonderful he is my best friend, but there is no time for him. I am socially isolated beacuse there hasnt been any time for me. The stress has been too much. I am now off work, but I am lucky because I still get paid so at least I dont have to worry about money, but I cant give anymore to anyone. At least I know i have support here.
Oh, and my name - Ohana from Lilo and Stitch when Lilo said to stitch, Ohana mean family, and family means no-one gets left behind (thats for my boys)

 

[Brightsy]

Time for a cute Schmolland fairy tale!

Last week I went to my DS9's class Harvest Party. While I was mingling w/ the other adults my son's teacher told me about a cute thing my son did.
About 2 weeks back my DS was chosen to be Line Leader for the week (he's in 3rd grade,btw.) Well, apparently my little monkey has been paying attention since the year began. The teacher usually instructs the Line Leader to line the kids up in different ways, this keeps things fresh and the kids like it. Well, my son took initiative and would line the kids up in the different ways each time until towards the end of the week he ran out of the ways the teacher used. Instead of repeating patterns he started making up his own lines for the kids! LOL!
The teacher and the para thought he was so cute, and he did so well they wished they could let him be line leader everyday, but that's not fair for the other kids. So, instead my DS is now the class meterologist and every morning he gets to tell that class the forecast for the day. Apparently he loves this job, and is pretty good at it! My boy just loves being in the limelight! (Just like his Mommy! LOL!)
Anyways, also while at the party I ran a craft table for the kids. The kids would sit down and say "Whose mommy are you?" I'd tell them and their little eyes would get big as they'd say "You're his Mommy? COOL! Hey, V! You're Mommy's cool!"

 

[lovethattink]

Brightsy, thanks for sharing that cute story. I needed to smile after last night!

Last night I was so exhausted til I got to bed. DS had a meltdown because his brother called him a name. It lasted over an hour and I became a human punching bag until I could get myself in a safe position. I know the social stories on remaining calm are helping, or at least he is remembering them, AFTER his meltdowns. I know it helped me, because I was able to stay calm, tell him we will talk once he calms down, and remain quiet and calm until he calmed down. Afterwards, he was able to tell me how he should have handled his frustration and anger at his brother. I hope we can soon come to the point where he will remember what to do before he acts out, so that he DOESN't act out. In the end, he didn't even remember what got him upset.

How do you all handle situations with other siblings? There are 10 years between my kids. I think I am going to have to insist that the oldest stops fooling around, playing, teasing, etc. and only engages him in polite, casual, and serious conversation until ds6 learns to participate otherwise. It's too frustrating on me to deal with the meltdowns. Any suggestions?

 

[Brightsy]

My boys are only about 2.5 yrs. apart. My older son is 11, the younger just turned 9. They squabble all the time. Older DS has ADHD and general anxiety disorder, and probably an LD as well. So he's got issues too, esp. w/ puberty just starting to smack him upside the head.
So, they squabble. Usually it sorts itself out, but now and then...*sigh* My older son just doesn't know when to quit sometimes, a lot of the time. He eggs on my younger son and then gets all confused when my younger one gets fed up and hits him. *sigh*
So we do have some rules, we've pretty much out-lawed rough housing, neither kid knows their own strength.
One thing that has helped is karate. They've been doing it for about 7 months now. Since we started they seem to be better able to keep their cool. They don't fight as much. They've been learning the lessons our karate master, Shihan, teaches well. I even started karate. Which has come in handy. I've only been at it 4 months but I've learned how to block. So the times my younger DS does lose control and starts flailing I have a better ability now to block the stray blows and how to calm him down.

 

[Nik's Mom]

Thanks for your . I have two boys one is 7 who is low functioning, and a 10 year old who is higher functioning, both attend a specialist placement. We adopted the boys to give them a second chance at life, but it is so hard. I work full time, look after elderly parents, a my husband is wonderful he is my best friend, but there is no time for him. I am socially isolated beacuse there hasnt been any time for me. The stress has been too much. I am now off work, but I am lucky because I still get paid so at least I dont have to worry about money, but I cant give anymore to anyone. At least I know i have support here.
Oh, and my name - Ohana from Lilo and Stitch when Lilo said to stitch, Ohana mean family, and family means no-one gets left behind (thats for my boys)

We have a lot in common. I also have 2 sons on the spectrum. My 8 year old is moderately functioning and 11 year old is higher functioning. DH and I had busy careers and we took in my elderly mother after my father died. She lived with us for 3 years. That left little time for us as a couple. We finally decided to go away for one weekend alone and boy did that make a difference!

Since then, dh's job relocated us to Kansas. I don't work anymore because without family around, there really isn't anyone to watch the kids after school. And my mom did not want to leave the warm California weather for cold Kansas, so it us just the 4 of us now. But I do know your struggles and can totally relate to the isolation.

 

[lovethattink]

Brightsy, the psychologist did suggest some form of martial arts, dance, or gymnastics to us. He said it makes a person more aware of their body and what their body is doing, since it involves so much control. Maybe once we have all the hospital bills paid off we can enroll in classes.

 

[redshoes]

I'm just checking in with everyone . I've read everyone's posts and hope that there are at least some smooth spots in the journey for you right now. Things around here have been very busy and I'm still trying to adjust my thought process while parenting DS.

We went for Neuro testing last week and we get the results back tomorrow. The Doctor took my DH aside in the middle of testing to tell him that DS's scores are high in everything but nonverbal learning skills. She said to prepare ourselves for something on the spectrum because that's where we are headed. We had our first session with C's new therapist yesterday and she is amazing. We are still waiting to figure out what we are dealing with when it comes to DS but she is an expert in the field of Aspergers. She was careful not to diagnose, but said that a lot of his behaviors are classic when it comes to PDD kids.


DS anxiety is through the roof and at times it really feels like he could suck me dry. I know that all of these things are normal, but he is just so needy all the time. His therapist at the day treatment center said, "meet all of his needs the minute he expresses them and he will become less needy". So far that has been far from true. He honestly takes more energy and attention and time than my 8 year DS and my 7 month old baby. That is where I feel like I'm failing. I'm giving all I can to C, but in the meantime my other kids are suffering. Does it get easier to find a balance? I know that Moms of NT kids have these issues, but I also know that they aren't worried that WWIII is going to break out if they don't address their 6 year olds needs right away like I am.

My house is a wreak, my marriage although is fine is taking a backseat to DS, my other kids are doing well but I wish I had more time for them, and I'm just tired of trying to do it all and adjust to a new reality. One of the things that I struggle with is leaving all the kids with my DH and taking time for myself. Don't get me wrong, my DH is completly capable of taking care of the kids but he isn't as in tune with the premeltdown signs as I am. This means that he can miss some of the things that if addressed early don't lead to an all at meltdown. Plus, I feel bad leaving him to deal with it on his own. I feel guilty that when I get home to the horror stories and I know that for safety concerns, an extra set of eyes and ears are always better. Yet, I'm okay to be left alone with all of them when he goes out. I know not at all rational or healthy.

This post isn't suppose to be all gloom and doom, I'm just trying to catch my breath.

 

[Dancind]

I am in awe of the Moms here that are handling more than one child on the spectrum. I don't think I could have done it, but I guess you do what you have to.

The writing thing was fun. DD learned to keyboard when she was 8. But then it was a battle getting the teachers to accept that a gifted child with ADD (her diagnosis) could not hand write or copy. I asked her once what the hardest thing was in 4th grade and she said copying the sentence from the board first thing in the morning. We had to home school in 5th because that teacher just would not give her a break. Guess a more accurate diagnosis would have helped, but I didn't know what was wrong (though I knew it was something more) and didn't get any help from the doctors we saw, or the school.

But here is happy news. DD is 19, still in school though still doing just enough to get by. She has worked at Starbucks for two years. Her boss pretty much hated her, but she was good at the job so managed not to get fired. She just went through the interview process with our local Apple store, and got the job. She will be selling computers, ipods etc, basically spending her days listening to people. So not her forte', but she knows this and is determined to improve at it. Her goal is to be promoted to "Creative", the people that teach customers how to use the programs etc.

This is beyond anything I thought she would be doing at this age. If you could have seen her at 8, or even 13, you would know what I mean. She is not done with her struggles, and will never be, but this is really amazing progress in responsibility and socialization. I'm beyond proud, and hope this story will be encouraging for some of you.

I have to add, she still can't handle laundry. She does it, but then it ends up all over her floor.

 

[Kat77]

Today was one of those days. DS10 had a mother of a meltdown when I dropped him off at school after a morning ortho appt. I had to stow the backseat in order to pry him from the van with help. It was quite an event. He is not sleeping well at night lately. Ugh.

Dancind- Apple is my kids current fixation! He loves to chat up everyone about Apple vs. PC and Steve Jobs vs. Bill Gates. The Apple Store is like his personal Mecca. You daughter is my sons hero- an aspie working for apple!

 

[redshoes]

One of my friends sent me this link today, while I was crying about how overwhelmed I feel. This Mom captured exactly how I've been feeling and I thought it might be helpful to someone else here.

http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/

 

[Dancind]

Redshoes, that was beautiful. Maybe my cloak is in the closet now, but sometimes it is still by the bed. And with Aspie Moms and daughters, there is a time when your heart just breaks because your daughter decides she hates you for all the "interfering" you have done. I think maybe we are nearing the end of that, too.

Kat77, do tell your son about the Aspie girl at Apple! He may get there some day too! We can only hope it is not the final goal, but as a learning experience it's going to be amazing.

 

[bookwormde]

With knowlege and understanding and finally letting our kids develop as who they are instead of who society thinks they should be, it does get better (a lot better). Society expects that we will pound our square pegs into thier round hole template, and that is the source of the vast majority of the problems we face. Learning to say no to society while still teaching the skills and developing our kids gifts so thay can make their own choices in the future as to the extend they want to fit into the round hole template is the balancing act we are faced with.

bookwormde

 

[lovethattink]

We have 3 alterations in our schedule this week. He is going to start going to a PE for homeschoolers on Tuesday. He also has to have blood levels checked on Tues to see if his tegretol is in therapeutic range. This is his first blood draw outside of the hospital setting. And on Wednesday he begins counselling with a new therapist. I am thinking the PE can wait til the following week to start, because I know the blood work will be a problem. (It took 6 of us to hold him down in the ER for his last level check.) On the plus side, he hasn't had any seizures since the ER visit on Oct 24th!