Exhausted from parenting/ASD children/Welcome to Schmolland!

[toodycat]

It seems to me that the schools are often happy to tell us our kids can't do it. My theory is that until my son tells me he can't do it, my expectations stay high.

(BTW, he is typically in touch with his feelings enough to object if something isn't working out for him.)

 

[toodycat]

Good news and bad news today at Casa Toodycat. First, the good news...we had had to cancel our trip to WDW because of my broken foot. Yesterday, DH and I calculated that since we are flying to JAX at the end of August to drive to Hilton Head to visit his mom, it wouldn't be too difficult to switch airports leave a few days early, stop at WDW for 3 days and then drive to Hilton Head from WDW. At that point, I will have been healing for 16 weeks, so I think I will be able to walk around the parks. DH decided we should stay at the GF again which is never a problem for me.

Now the bad news or at least the news that is making me concerned...DS' neuropsych evaluation from the school arrived. Everything is age appropriate and there really weren't any surprises, except that the school psychologist noticed that DS, who suffers from some whopping auditory processing issues, favors his right ear. My boy has a history of ear infections and allergies, dating back to infancy. He had tubes twice and nearly had a third set. When I asked him about it, he said "I seem to hear better with my right ear." Now, I'm worried that there is some physical problem that has caused him so many language problems. His hearing tests are in the normal range. However, onauditory processing tests, everything comes up in the "disordered" range. Has this happened to anyone else's child? I'm planning to take DS to an ENT to get his ears checked out again.

 

[bookwormde]

Normal hearing test and Auditory processing disorder are pretty much standard for Aspies.

bookwormde

 

[toodycat]

Bookwormde--I know that APD is part of the package, but it is the favoring of one ear over the other that I am worried about. DS had many bouts of otis media as a baby and toddler and two myringotomies. I am worried that there might be fluid in his left ear again or some other medical problem.

 

[bookwormde]

From years of noise (sound engineer,farmer and construction machinery and firefirghting) I have significant loss in one ear and that really impacts my ability to do AP from that side, so it is good to know it there is a physiological reason since that can compound the issue.

bookwormde

 

[toodycat]

Yes, I'm wondering if there was some residual hearing damage from his two surgeries..

 

[kampfirekim]

Toodycat, I hope your DS ears are OK!

Where are all the Schmollandites? We seem to have been missing some folks lately. Not much to report here. Besides DS crumbling ice cream cones (empty ones) all over the floor and trying to lick grease from off the camper hitch, it's been a relatively normal today.

N/T DS7 informed me today that if we were puppies it wouldn't matter if we chewed w/our mouth open and we could pee on newspaper.

Hope all of you are doing well in your Schmollish villages!

 

[iwrbnd]

Hello neighbors! I've been out of town and am too tired to post anything but I wanted to say "hi" and I'm still around!

 

[toodycat]

KFK Toodycat, I hope your DS ears are OK!

I hope so too. I did some research into the best ENT docs in our area and I'm going to call one tomorrow. DS is very suggestible, so he has started referring to his "one good ear" since I mentioned the doctor's report. I have no way of knowing if he really only has one good ear or if he is just thinking that if the doctor said it, it must be true.

We had fun last night, though. A dear friend plays in an acoustic duet at a nearby restaurant. It's nothing fancy---deep fried seafood near the waterfront---but since it's not a bar, DS is allowed in. First he complained that it was too loud, but once we managed to be seated away from the speakers, he calmed down and actually sang along to Green Day and Oasis! I think we're going to bring him back when they play again in two weeks.

 

[kampfirekim]

Hello neighbors! I've been out of town and am too tired to post anything but I wanted to say "hi" and I'm still around!

Glad you're back! You've been missed!

KFK Toodycat, I hope your DS ears are OK!


I hope so too. I did some research into the best ENT docs in our area and I'm going to call one tomorrow. DS is very suggestible, so he has started referring to his "one good ear" since I mentioned the doctor's report. I have no way of knowing if he really only has one good ear or if he is just thinking that if the doctor said it, it must be true.

We had fun last night, though. A dear friend plays in an acoustic duet at a nearby restaurant. It's nothing fancy---deep fried seafood near the waterfront---but since it's not a bar, DS is allowed in. First he complained that it was too loud, but once we managed to be seated away from the speakers, he calmed down and actually sang along to Green Day and Oasis! I think we're going to bring him back when they play again in two weeks.

Ah, yes...the power of suggestion. An appointment with an ENT would be a good idea.

Sounds like you had a lot of fun. I love to hear acoustic music. Deep fried seafood on the water front you say? That makes it even better! Looks like you've found something very enjoyable for your family to experience together. Awesome!

 

[Daisy&Max]

Hey Schmollandites,

I'm here. I've been reading but haven't been posting. Good luck with the ENT stuff Toodycat.

iwrbnd...glad you are back.

KFK....woohoo on the carpet cleaner is getting dusty! That is a big step. Maybe being out of school helped it.

We survived cub scout camp. In fact I ran into another family living in Schmolland. I saw this parent moving his screaming kicking child off to the side of the field. The boy was about 7 or 8 years old and he was screaming "get off of me. leave me alone." etc. Dad ended up picking up the little boy and carrying him to the edge of the field where he sat down with his arms around the boy. As soon as I saw that I realized that they were fellow Schmollanders. I wanted to cry watching how dad was handling it. He was so patient and showed no signs of frustration or (in my case) embarrassment. He stayed down squatting next to his son and talking to him quietly. After a few minutes he stood up, next to him and they both watched the other boys on the field. I tried not to stare at them but I wanted to see how he did it. A few minutes later he stepped a few feet away from his ds but kept his eye on him. I walked over him, trying not to sound choked up, and told him that I wished I could bottle his patience and use it myself. He told me that his ds was autistic and he was just having a bad afternoon.

This dad and I talked for a while about dealing with our kids and not worrying about what other people think or say. I felt so inspired after talking to him. He was a perfect example of how to deal with an autistic child. It made my day.

We haven't left home in two days so they have seemed relatively normal. I've spent the last three days stripping the paint off of my stair railings and then painting them and priming them. I have one more coat of enamel to put on one side and then these will be done. Next thing up is to pull up the quarter round I put down a couple of years ago but did wrong, so when I get paid this week I'm going to go get more quarter round and try again with my mitered edges. My goal is to get a lot of the little projects done on my house during the summer. I have a lot of the stuff here at the house that I've already bought that i just need to get done.

I hope everyone has a great week. I'll be back to check in on everyone this week.

hugs to all,
Daisy

 

[Nik's Mom]

Hi everyone! I'm new to this thread, but an old time Dis'r! I pop in on this board from time to time though. DH and I have 2 autistic children, age 8 and 11. Our 11 year old is high functioning, but struggles academically. Our 8 year old is moderately functioning, has ADD and anxiety issues.

We are really stuggling with my youngest son. It's hard for him to focus at school because he is always afraid that there may be a loud noise. Poor guy was traumatized by a fire alarm when we first moved from California to Kansas. It was so bad that he missed over a month of school because he was so terrified of a fire alarm going off. It took a lot of hard work to get him back in school. I'm so thankful for our support team at school. But, ds still has not completely got over his fear of noises and it really effects his academic performance.

I'm currently planning on telling my 11 year old son about being autistic. It's time that he learn about his condition. He is going into middle school in the Fall and I want him to be prepared emotionally for that. I admit that my stomach is in knotts when I think about having that talk with my son. I even start to cry when I imagine having that conversation. Ugh! Has anyone told their child and care to share your experience with that? How did your child handle it? I'm so nervous.

 

[Kat77]

Just like Daisy, I've been reading but not posting.

DS10 just finished two weeks of social skills camp. It was AWESOME! The same kid who never wants to do scouts or school loves this summer camp (second year attending). We hope it is an indication he will enjoy the Aspergers program next year since it is the same dept. running the camps. DD12 was tagging along with friends for nightime VBS' the past two weeks so the combo of AM and PM camps had me worn out. I slept until 10 this morning... Finally, it's summer!!!

Anyhow, there is big drama going down in our house right now and those of you with only boys should take a moment to thank the heavens for such blessings .
DD12 is under house arrest for the rest of summer (okay, no sleepovers, she can go to the occasional movie) over a huge breach of trust commited at a sleepover. Apparently, she is not leaving her room to teach me a lesson. I am sure that will work out for her and her siblings won't tire of being her butler or anything... I won't interfere, I'm totally rooting for her! I'd even consider allowing food upstairs to help sustain her efforts but DH would never agree to that.
I wonder if she might like to shampoo her carpet this week, since she'll be in there all summer?

 

[ohana7]

Nik's Mom, hi I am a parent to two autistic boys, also I am an outreach/advisory teacher for AS children. I use I am Special by Peter Vermeulem and Can I tell you about Asperger Syndrome by Jude Welton when parents ask me to discuss Autism and what it means with their children. May be worth a look.

 

[iwrbnd]

Hi everyone! I'm new to this thread, but an old time Dis'r! I pop in on this board from time to time though. DH and I have 2 autistic children, age 8 and 11. Our 11 year old is high functioning, but struggles academically. Our 8 year old is moderately functioning, has ADD and anxiety issues.

We are really stuggling with my youngest son. It's hard for him to focus at school because he is always afraid that there may be a loud noise. Poor guy was traumatized by a fire alarm when we first moved from California to Kansas. It was so bad that he missed over a month of school because he was so terrified of a fire alarm going off. It took a lot of hard work to get him back in school. I'm so thankful for our support team at school. But, ds still has not completely got over his fear of noises and it really effects his academic performance.

I'm currently planning on telling my 11 year old son about being autistic. It's time that he learn about his condition. He is going into middle school in the Fall and I want him to be prepared emotionally for that. I admit that my stomach is in knotts when I think about having that talk with my son. I even start to cry when I imagine having that conversation. Ugh! Has anyone told their child and care to share your experience with that? How did your child handle it? I'm so nervous.

I feel for you! My oldest is ADD and splashed with aspergers. Children's Mercy (near you) said "Aspergers probable" so he's very high functioning. I also didn't want to tell him but his doctor at CMH encouraged me to. He said my son already knew there was something wrong and if we didn't tell him the truth he would fill in the blanks with worse things like thinking he's stupid. We told him and printed off a list of famous people that had aspergers. It was life-changing for him! He seemed very relieved to have the answer and it empowered him. In a strange way he was even proud of it! I hope your conversations goes as well as mine did. Good luck!

 

[Nik's Mom]

Thanks for the comforting words, ohana7 and iwrbnd! I ordered books from amazon and am waiting for them to arrive so I can have something for ds to look at when we have our talk. It's just so hard because I know how it felt when we found out he had autism. I can only imagine what he will feel like.

 

[Daisy&Max]

I told my son as soon as we had a dx of hfa/asperger's when he was 6. I used the book All Cat's Have Asperger's. I felt like it would be better if he knew and understood why he was different. He is very protective of his dx. He will get very upset if he tells someone that he has Autism and they don't believe him. Oh and he is 10 now. I also use it when I'm explaining to him why something he is doing / has done is socially inappropriate. I try to phrase things in ways that show him the way NT people do things and how he has to do them to fit in.

Kat...I was LOLing when I read about your DD. I'm sure she'll show you. It sounds like the girls I teach (6th grade). I'll keep my fingers crossed that she will hold herself to her promise. hehehehehe

After reading here and reading some more of Tony Attwood's book I am trying to make changes in how I deal with DS10. For example, when he makes himself something to eat or when he is done eating he leaves everything out. So we now have a list of rules for what to do when we finish eating. We are making a list for making food/drink (our big thing is putting the milk away and closing cabinet doors.) Then we will work on toys after he is done playing with them.

I have to thank this thread and the push to read more about EF to finally get me to take the steps I need to. I have heard about making the lists but my son seemed to be higher functioning than that and it seemed pointless. But the more I read the more I understand what I really should do.

Daisy

 

[toodycat]

Nik's mom---Telling my son was a process. When he was little, I told him "you have trouble with your words." Then, as he got older, I explained that those feelings he had of pain during loud noises, difficulty relating to others etc. were part of PDD-NOS. As he got older and complained about aspects of his experiences, I would say, "That's because you have PDD-NOS." I also told him that he had certain bonuses from it, like his photographic memory for certain things. I compared to my own experience with epilepsy: it is something I have to deal with and for which I take medicine and there are some situations I have to avoid because of it, but I can be very happy living within those parameters. I think the comparison helped because he knows that I have to modify my life, but he also knows my life is pretty good.

Re DS: Camp started today. DS seemed happy with it. He is studying film and folk guitar. I've made an appointment for him with an audiologist at a hearing clinic at a local university hospital. They specialize in the treatment of auditory processing disorder. He has already been diagnosed with APD, but I am hoping they will be knowledgeable enough to know what is APD and what is hearing loss.

As for me, my broken foot is looking better and I am allowed to wear sneakers for several hours a day instead of a boot!

 

[bookwormde]

Nick's Mom,

It is important to let him know that it is not something that is wrong it is just different, with some amazing gifts and some significant challenges. A copy of Genious Genes is a good one to add to the ones you want to go over with him so he can appriciate the gifts of Autism genetics and the importance of it within our civilization.

bookwormde

 

[Brightsy]

Hey all!
Things have been super busy in the Vinnish sector of Schmolland. We've been juggling fun times w/ karate, therapy, testing and more. Oldest DS is 11, and is having his blood pressure checked daily! for the next 5 days at least. His BP was moderately high last time we went in and now the Doc wants a 5 day test...poor kid. Today's bp was nice and normal, 4 more to go!
Both my oldest DS and his little Shutch brother got their red-white intermediary belts for karate! YAY! And me, well, I got this crazy notion to try karate myself! I hope it's not too much for me. (I have fibromylagia, among other issues.)
We're going on another little expedition soon.
Oh, and I am tired of explaining to people that my Shmutch boy LIKES his long and shaggy hair, and that it is just one battle I'm going to give him. My FIL just doesn't get it. There are more important thing to struggle with than my son's hair. He lets me brush it so it doesn't tangle much. He doesn't care that some folks have called him a "she." He just calmly says "I not a girwl. I a boy."