Exhausted from parenting/ASD children/Welcome to Schmolland!

[blondietink]

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

Thank you for putting it this way! I have been saying this for years ... why would I want to change my DS when he is so happy. So what if he memorizes movies/commercial dialogue and uses them in appropriate moments? So what if he draws in the air with a pencial when he doesn't have paper available. That is how he learns, though his visual skills. And he is awfully handy to have around when driving across the country as he memorizes all maps, "The Next Exit" book, freeway interchanges, can spot whatever hotel or restaurant we are looking for from a mile away, etc. So what if he can read, but has trouble understanding the content/concepts? So what if he can't do algebra? My DS is who he is and has learned through his 18 years of life how to get along in our world enough so he is happy in both worlds.

 

[disneymom3]

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

I will read that book, thank you. I am also going to reread your post a few times. I hvae the letter in front of me and it says Autism Spectrum Disorder NOS. So that is confusing. I have spoken with another mom in our homeschool co-op who has three kids on the spectrum and she has recommended a facility she felt was most helpful to her in this journey so I am contacting them this week to get on their waiting list.

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.

Just wanted to give you a big cyberhug.

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.

It was odd and I really felt I was not given very much information about how these various conclusions were drawn. I am doing better at not stressing, thanks. I am reminding myself that having words to describe it does not change the child he is so my parenting and educating does not need to change that much. Hopefully it will just help me to understand better where he is coming from.

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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?

I have one younger who is 9 and not a problem. I have one older who is 14 and is a problem. She is very critical of her brother and he can't take criticism at all. We finally had to sit down and have a very serious chat. I have been saying this or that all along, but she has anxiety too and just thought he was the same. His issues are SO much bigger than she can even imagine. I told her I expected her to cut him a lot more slack and that when someone is suffering, the last thing they need is negative input from someone else. The vast majority of hte time, she is not trying to be mean to him but it blows up anyway. Since the older one is old enough to understand, I think your idea sounds reasonable.

 

[rodeo65]

This has been a roller coaster of a start to the school year for us, but now two months in I think we're finally on track.

I posted back in August about a wonderful meeting I had been to with DS's new learning services coordinator for this year. I thought she really knew her stuff and seemed to be proactive (had read all available information on DS - psych/ed, reports, previous ILPs etc) and very professional.

Fast forward to a month into school. Our 9yr old ADHD, LD and prone to some anxiety issues son was cracking. He was in a private school, specifically so he could get better support through smaller classrooms and more specialized learning services work. Fourth grade is a high pressure year, which we knew going in, but that was the purpose of the ILP wasn't it? To support the specialized needs of his LD and accomodate his ADHD symptoms?

We were starting to get phone calls again about behaviour issues that we were pretty sure had been ironed out over the past couple of years. Inappropriateness, silliness, lack of focus etc.

I went in for our usual start of year ILP meeting without DH because it was expected to be routine. It was anything but.

We had tried meds for DS in grade two and had disasterous results. We do not, nor will not medicate again. We have been clear about this with his school. At this meeting I was tag teamed by five - principal, school counsellor, learning services teacher, classroom teacher and the assistant principal. They all told me how unfocused he is and how their entire day could be spent re-directing him, but they had other kids to deal with. Then I was slid a booklet from Toronto Sick Kids Hospital on teaching to ADHD kids. It was 10 pages. The first column was about classroom modifications the other 91/2 pages were about meds.

I left very disheartened. I had though we were all on the same page about his day to day management. The LSC who had seemed so on the ball in August, basically suggested that if we did not medicate him he would just fall further and further behind, academically and socially - already there were issues with peers this year. That his ILP was a "laundry list" that could never all be accomodated at once. Our family was going away for the weekend and DH and I took up his assessment and a hilighter along with their ILP and marked everything up.

We realized that we had fallen down in the advocate part of our job. In the day to day getting through it all, we'd left the application of the recommendations to the school. It was all in the 22 page document. He has a significant LD. If he is not managed in a way that teaches through his LD we could expect an exacerbation of his ADHD symptoms. That is exactly what was happening. He was not getting 1/10 of his needs met as far as his LD went. He felt stupid, and he is not. He had also been bullied by one boy for the three years he had been there.

We started looking into alternatives. It was funny, he had said the same week we decided to start to look for other answers that he was going to a new school. We had not said anything and were very careful to discuss anything to do with school after they were asleep or when they were not home. We have found a wonderful school that is exactly designed and run for kids like DS. 98% of the kids there have ADD, ADHD and / or some kind of LD.

We took him for a trial day and he LOVED it. They acted out history, they used visuals for everything. They teach how he learns.

Then we had to get him out of our contract with his school without burning bridges since his sister remains. It was such a difficult discussion (with me tearing up and voice cracking after I had vowed to remain strong), but we did it. They released us from our obligation there and we moved him three weeks ago. He is thrilled. I have not had to nag about homework since. I have not had to nag about getting his reading done since.

We are dealing with some kind of defiance issue but it seems to be poor parenting on DH and my part since he doesn't act that way at school or in other situations - it's directed at us. So, we're on the hunt for a referral to a counsellor specializing in ADHD kids that was recommended by the principal at his new school. In the meantime, we're trying not to "cave" as we have in the past, I think out of guilt for all he deals with. We have had fewer meltdowns in the past week vs two or three weeks before that and since the summer. We have actually "seen" him actively looking to push our buttons and get us upset, which has made it easier to remain calm and not engage. Hopefully we'll get some new tricks for our bag with a good counsellor.

Thanks for still reading if you've made it all the way through. Sorry this has turned into such a novel. I have meant to come on and post for weeks but was so overwhelmed and upset by everything we were trying to get through, that every time I'd open a post I'd type a few words and quit it. I feel like I'm crawling out from under now. At least for today.

 

[bookwormde]

The defiance issue has nothing to do with your parneting, but rather the stress of having to keep it together in a school which is not providing adaquate and proper supports. It is safe at home so it is very common for them to feel comfortable enough to express themselves. This situation is one of the first clues that the schools are not doing there job.

bookwormde

 

[Brightsy]

Time for a fun story, Schmolland style!
Sunday I took my DS9 to see Titanic: The Artifiact Exhibition. He knew we were going on a surprise trip, and where we were going, he just didn't know what we were going to do. (He's good like that, so long as he knows a surprise is coming he's ok w/ the surprise part, because the "rules" of a surprise includes not knowing what the surprise is...lol!)
Anyways, we turn the corner to the musuem and DS says "Titanic?" I confirm this and then ask him "Would you like to go see the exhibit?" He says, "YEAH!" So I tell him, "Good, that's why we're here!" He says in that beautiful lilting voice of his "Thank you, Mommy!"
It just so happens that DS had brought his Lego Titanic on the trip. This is something he built and designed by himself, so he decided to take the Lego into the museum w/ us. He had an amazing time! Although he did scare me once a little, the hand flapping, hopping AND spinning came out in force when we were waiting on line to get into the exhibit. I had to take him to the side and use some deep pressure... nice thing is that woman in charge of the line let us in 30 minutes before our ticket time, she said there wasn't a crowd so to go in early! That, more than the deep pressure helped DS get himself back under control. Inside the exhibit DS didn't pay much mind to the artifacts, he was way more into the drawing and pictures and videos. At one point he started narrating the a video of the sinking! He got into some good detail about it. (I had to translate some of his special speech for others, DSs speech delay makes it hard for him to be understood sometimes.) He liked touching the "iceberg." His favorite moment was when he met "Molly Brown." He'd done a presentation on Molly Brown to his Cub Scout den just last week. Outside the exhibit there was a gentleman from a local model boating club. He had a display of boat models, including the Titanic. DS liked that. He showed the gentleman his Lego Titanic. The gentleman was very impressed, even more so when DS showed how is Lego creation even breaks apart in the same place the real Titanic did.
Sorry this got so long, folks, I get excited easily! LOL!

 

[disneymom3]

That is really fun Brightsy. I am glad you and your son had such a wonderful outing.

 

[lovethattink]

Brightsy, thanks for sharing the Titanic story!

What is deep pressure?

 

[Earstou]

Brightsy, that's a sweet story! It's so fun when our kids are in 7th heaven over something!!

 

[Brightsy]

Brightsy, thanks for sharing the Titanic story!

What is deep pressure?

Basically, I squeeze my son pretty hard. I wrap my arms around my sons torso, keeping his arms "trapped" between us and hug him really firmly. I release and hug a few times. Then I'll press down on his shoulders a few times. Then I hug him again, less firmly and rub his back. That almost always brings him down.
At home he lies down and roll a yoga ball over him, pressing down a bit. At therapy they use the ball and they have a "squeeze machine" that he adores. (It looks kind of like a puffy pasta maker! LOL!)

 

[lovethattink]

Basically, I squeeze my son pretty hard. I wrap my arms around my sons torso, keeping his arms "trapped" between us and hug him really firmly. I release and hug a few times. Then I'll press down on his shoulders a few times. Then I hug him again, less firmly and rub his back. That almost always brings him down.
At home he lies down and roll a yoga ball over him, pressing down a bit. At therapy they use the ball and they have a "squeeze machine" that he adores. (It looks kind of like a puffy pasta maker! LOL!)

Is this occupational therapy? We are new to the diagnosis, just starting to get help for my son. So far his only therapy is counselling.

 

[Brightsy]

Is this occupational therapy? We are new to the diagnosis, just starting to get help for my son. So far his only therapy is counselling.

Welcome to Schomlland!
My son gets physical therapy (PT), occupational therapy (OT) and group speech/social skills therapy outside of school. In school he gets speech, adaptive phys. ed, and OT. His OT and PT uses deep pressure. For speech he sometimes uses a "bear hug" vest which also applies firm pressure.

 

[rodeo65]

The defiance issue has nothing to do with your parneting, but rather the stress of having to keep it together in a school which is not providing adaquate and proper supports. It is safe at home so it is very common for them to feel comfortable enough to express themselves. This situation is one of the first clues that the schools are not doing there job.

bookwormde

Thanks bookwormde - we thought the school issue definitely played into it, but I also think that we didn't handle it correctly as well. We're working on it now - stay calm, stay calm, stay calm...and then calm down.

It is definitely improving but we're having to let go of our need to control - or at least learning how to choose the important things to manage for him and where he can make decisions himself.

 

[bookwormde]

There are lot we all need to learn, as long as we are open to learning an trying and focus on meeting our children's needs we are good parents. Those who will not accept their children for the special, unique individual that they are and want to force them into being someone who they are not due to the parnets own needs or fears are the parents that I might place in the other catagory.

bookwormde

 

[lovethattink]

Thanks Brightsy! We see the neurologist for his epilepsy on Tuesday, I will ask him about OT and/or PT. He is the one who sent us for the neurocognitive tests for his developmental delay, where he was found to have the symptoms for Aspergers and ADHD.

 

[Brightsy]

Thanks Brightsy! We see the neurologist for his epilepsy on Tuesday, I will ask him about OT and/or PT. He is the one who sent us for the neurocognitive tests for his developmental delay, where he was found to have the symptoms for Aspergers and ADHD.[/QUOTE

At the very least have an OT and PT evaluation done. I've not met many kids on the spectrum who didn't need one or the other, or both. Also speech therapy might be useful.

Good luck!

 

[Brightsy]

As if life in Schmolland weren't challenging enough...I broke my finger at karate yesterday!
They had to cut my wedding band off. *sniffle*

 

[lovethattink]

Thanks! His speech is pretty good, and his vocabulary is extensive, but he does have a lisp. Ouch! I hope you finger heals quickly and that you don't experience much pain.

We started with a new counsellor last week. It did not seem to go too well. To overcome his fear of flushing toilets she suggested he enter the bathroom, close the door, stand or sit at the toilet, try to go, flush, wash hands every hour that he could for "homework". Well that made his anxieties and fear even worse! The first time he went in there, he closed the door, flushed and ran like the wind. He jumped on a chair like a person afraid of a mouse and almost fell off. My husband said, that's enough of that!

I took him to Epcot on Friday. I brought post-it note pads with me. When he had to use the restroom, I put the sticky note on the sensor. Told him if he hears any toilets flush it's not his. He heard some toilets flush, covered his ears, but did not bolt! He did his duty. I told him his toilet was going to flush when I take off the sticky note. Asked if he was ready and took off the note. He did not bolt. He stayed with me the whole time!

At Turtle Talk with Crush, there were 2 children in line near him. He actually struck up conversation with them. He said, "I see you are a fan of silly bands, so am I." He took one off and showed them it was a horseshoe. The little boy said liked it, and he actually gave it to him!! The boy gave him a band in return. DS was so excited because he never traded for silly bands. He did a little flapping, but stopped himself, and pulled out more silly bands from his pockets. He gave the girl a silly band and the boy and said that he didn't want any in return. This is major for him, because he is emotionally attatched to each and every one of his possessions!!

Captain EO was a different story. When he saw it wasn't Honey I shrunk the Audience he was NOT happy. I explained to him what the show was about, and he was ok getting in line. UNTIL, the cm announced that this show has special effects that might frighten small children. Panic mode set in just as they opened the handicap rope and let us in line to the preshow. I promised him that once we got into the theater that if he still didn't want to see the show, we would walk right out of the theater and not even sit down. The doors opened. We went in, and he remarked the theater was the same!! But when I couldn't answer him as to what the special effects were, he had to leave. There was too much anxiety. He keeps asking me what the special effects are. I guess I need to find a thread with spoilers.

 

[Brightsy]

To help with the potty issue you may want to try noise reduction ear muffs, like the kind they use on firing ranges or such. My DS had a problem w/ flushing noises, too. (and other louder noises) The earmuffs helped a lot!

The silly band story is great! We had a similar experience w/ pin trading at Disney.

 

[lovethattink]

My oldest use to pin trade. He began in 2000, and within a year had my husband and I pin trading. We stopped about 5 years ago.

Went to the neurologist yesterday, and he thought PT and OT were good ideas.

 

[Nik's Mom]

As if life in Schmolland weren't challenging enough...I broke my finger at karate yesterday!
They had to cut my wedding band off. *sniffle*

Ouch! Sorry about the wedding ring.

I have a proud mom moment! The school music teacher gave my 8 year old ds a speaking part in a play. It was a one liner, but he was so proud of himself. They had another student walk ds up to the microphone and get him to speak his line. Then, his face just lit up because he was so proud of himself! DH and I were very proud parents. Several teachers told us how happy and proud they were that our son had a speaking part. They know how hard his journey has been.

I just cannot believe Thanksgiving is next week! This year has just flown by.