Exhausted from parenting/ASD children/Welcome to Schmolland!

[ppony]

Chiming in for roll call. I've been here, but not able to read much and respond to even less. My little guy will be starting preschool with a few other boys like him after our Disney trip. There has been much development here but no time to post because of some of it. My oldest (non-Schmolland resident) broke both wrists a few weeks ago, so between all that, all the dr's visits, my Scholland boy's therapy, dr's visits and in less than 2 weeks (his MRI) I'm exhausted. Too exhausted for the "Exhausted" thread even but I'm here. I'll pipe up sooner or later.

 

[persimmondeb]

Hi, checking in from this corner of Schmolland again. All has been well here, although I am going to ask my neurologist if there is possibly something hormonal going on with DS. We're 15, we're bigger by the the minute (as large as many grown men), but I don't see much puberty. Not only do we act 11 or 12, we look like 11 or 12 except for our size.

We are also going to take our first plane ride (to Europe) in December. Does anyone have tips (other than frisking him to make sure he isn't carrying anything that the TSA would object to).

 

[lovethattink]

persimmondeb, I sent you a message.

People might touch his belongings. There may be noises he doesn't hear every day. People might speak different languages.

My husband flew to Italy in his Junior year of high school. He was unnerved by the turbulence.

 

[Nik's Mom]

Hi, checking in from this corner of Schmolland again. All has been well here, although I am going to ask my neurologist if there is possibly something hormonal going on with DS. We're 15, we're bigger by the the minute (as large as many grown men), but I don't see much puberty. Not only do we act 11 or 12, we look like 11 or 12 except for our size.

We are also going to take our first plane ride (to Europe) in December. Does anyone have tips (other than frisking him to make sure he isn't carrying anything that the TSA would object to).

Hi. We travel with our 2 sons quite a bit. Here are some suggestions. If your ds does not handle lines very well, make sure you warn him about the lines for the TSA screenings. Have things that will keep him occupied while in line. Also, pack some snacks for him to munch on the plane. If he has issues with noises, try to find a set of noise reducing head phones. You can find them in Walmart where they carry hunting supplies.

 

[blondietink]

We are also going to take our first plane ride (to Europe) in December. Does anyone have tips (other than frisking him to make sure he isn't carrying anything that the TSA would object to).

If at all possible, I would take your DS on a short plane ride somewhere before flying all the way to Europe. It is a LONG plane ride to Europe, plus 3 hours of airport time before take-off. If he has not been on a plane before, he could get very upset at the confinement of the plane, the noise, the length of ride, the strange food, the strange languages spoken, etc. Or, he could have no problems. But, I would want to know before I took an airplane ride of 7+ hours.

 

[persimmondeb]

It's only six weeks away (and we're flying to Dublin from JFK, so it's about as short a transatlantic flight as possible-just under 6 hours) so I don't think it's possible to do a "trial run". He likes airports, so that's in my favor, and he's pretty good with lines. He will not get upset by TSA agents searching his stuff, or even frisking him, but would be more likely to try to watch what they're doing and ask questions. I'm a little worried about noise and vibration, but he likes carnival rides, and I'm hoping that he doesn't find the sensation that different. We're going to bring him some books, and I'm thinking a small "plane present", like a Lego set, might be a good idea. He functions most of the time like a 5th or 6th grader (despite being a high school honor student) so I think it shouldn't be too gruesome. He likes craft projects, but I'm not sure what would be TSA friendly.

 

[Earstou]

Legos on a plane might not be the best idea. If he lost a piece, would he be upset? It can be quite easy to drop something and not find it because it ends up under someone else's seat and you can't go crawling around to find it!
If you know he wouldn't be upset, then a small set might be okay.
For my kids, we learned toys with small pieces did not work well on planes.

I always made sure we had an mp3 player loaded with favorite music, a hand-held gaming system (maybe with a new game presented at the airport or on the plane or saved till later when things are looking bad? ), and snacks, some that ds carries and some that I surprise him with later. When he was younger, we brought small toys that would interest him for longer periods of time, like the puzzles with golf tees (don't know the name). I would tell him to pack toys, then I would pack some he didn't know about and bring them out when he got restless. I also would pack markers and paper, maze books, magazines, comic books and books.
We went to Dublin last year. Ds is older, and a seasoned traveler now. Mostly he slept, played with his psp, watched movies and kept track of where we were on their world map (same monitor as the movies). I'd recommend studying a world map and country map so your ds knows where you are going, if you haven't yet.
I have to warn you, the long time on the plane it the #1 thing my ds complained about.

 

[Earstou]

Oh, also, have you talked about turbulence on the plane yet? I know the first time my son encountered this he was quite upset. I hadn't thought to talk about this beforehand.

 

[lovethattink]

persimmondeb, I should have read your post before answering your pm, sorry.

My son's hyperfocus is Star Wars Legos. To keep the legos together while he is building on the go, we have started to use baggies, freezer bags, and a plastic shoe box size storage container with fitting tight lid. He keeps the legos in baggies, and builds in the plastic container.

 

[Earstou]

We've had toys go flying when the plane hits turbulence, so even containers don't always work. I could see all the little pieces popping right out of the container. If he is okay with losing pieces, I wouldn't worry. If he would get upset about a lost piece, I wouldn't use them on the plane, but would save them for hotel rooms!

 

[toodycat]

My DS whiles away the hours on a plane with Nintendo DS or uses his iphone or itouch. Once they announce that you are clear to use mechanical devices, the number of amusements you can have ready and downloaded on an itouch or iphone is limitless. My DS plays sudoku, hangman, tetris, solitaire or listens to music (which takes his mind off plane noise.) There is probably a virtual LEGO app out there as well.

As far as TSA, I would warn my son that he is going to have to give up his possessions for screening, but will get them back and will have to remove his shoes. The first time someone asked my son to take off his shoes, he was not a happy camper! Also. do not let your son wear a pullover hoodie. In 08,at the Tampa airport, my son was pulled aside and put into a tunnel like chamber where his sweatshirt was blown full of air to make sure he didn't have any dangerous weapons or chemicals. They wouldn't let me go with him, even though I kept saying "He has autism!" He was fine, if a bit confused, but a pilot on the line took me aside and told me it was the pullover hoodie that had triggered the extra search. So, if your son needs a jacket, make sure it zips up the front, so he can just remove it. Also, as with any trip, I would bring gum or sucking candies for the change in ear pressure.

Enjoy Dublin!

 

[persimmondeb]

His reaction to a lost piece isn't predictable. Sometimes he's mellow, other times it'll trigger hysterics. Lovethattink's social story reminded me of the shoe thing, which was good, since avoiding surprises is a plus. Security measures are unlikely to alarm him, and he might well think an extra search was really cool. I might not share this opinion. He did nearly ten hours on Amtrak in July without major incident, so I think we'll be okay. We are hoping he'll sleep, since he usually does in moving vehicles, but we're trying to be prepared if he doesn't. He likes to travel, although it's obviously kind of stressful for him, and geography is one of his enthusiasms (along with oceanography, marine sciences, history-especially military, and the pursuit of Lego). Sometimes I print up a schedule, which he finds easier, but he'll get very fussy if we don't stick to it.

 

[Nik's Mom]

persimmondeb, I should have read your post before answering your pm, sorry.

My son's hyperfocus is Star Wars Legos. To keep the legos together while he is building on the go, we have started to use baggies, freezer bags, and a plastic shoe box size storage container with fitting tight lid. He keeps the legos in baggies, and builds in the plastic container.

My son bought a lego book called Minifigure Ultimate Sticker Collection. You basically take stickers from the book and place them on the correct page. Ds spent hours putting it together. It's really collorful and has a lot of illustrations/scenery from different movies, including Star Wars. That would probably work better on an airplane than actual legos. In our experience, any toy with multiple pieces was a bad idea on the plane. Books, nintendo ds, portable dvd players were our biggest help on planes.

I edited to add a link for a Star Wars version of that lego book. I'm going to get this for ds. http://search.barnesandnoble.com/St...9780756629052/?pt=BK&stage=bookproduct&pwb=1&
I hope that helps.

 

[lovethattink]

My son bought a lego book called Minifigure Ultimate Sticker Collection. You basically take stickers from the book and place them on the correct page. Ds spent hours putting it together. It's really collorful and has a lot of illustrations/scenery from different movies, including Star Wars. That would probably work better on an airplane than actual legos. In our experience, any toy with multiple pieces was a bad idea on the plane. Books, nintendo ds, portable dvd players were our biggest help on planes.

I edited to add a link for a Star Wars version of that lego book. I'm going to get this for ds. http://search.barnesandnoble.com/St...9780756629052/?pt=BK&stage=bookproduct&pwb=1&
I hope that helps.

Thanks for thinking of me! We actually have 2 of those books, and they are awesome!! This summer, before he had to go for his sleeping MRI for his seizures, his "last year teacher" gave him the Lego Minifigure Ultimate Sticker Collection book. We had to wait a long time before they took him to get the MRI, and he just LOVED that book. He worked on it nonstop for about 5 hours and got bored. He ended up using a notebook that I was using to keep notes about his conditions and put the extra stickers in there, and wrote his own stories.

A few days later, we checked into SSR for a few days to escape our summer of doctors and hospitals. He showed his story to the CM at check-in. The CM took the time to read it, with lots of expression, asked open-ended questions, and interacted really well with our son. He told him that was a great story, and thanked him for sharing it with him. Not sure those in line appreciated the extra attention as much as my son did. But it REALLY made his whole vacation, and was a great self-confidence booster! And I noticed a couple times my son actually gave him eye contact!

 

[Brightsy]

Hi! I'm still here! Just been busy w/ appt.s, b-days, Halloween, and the upcoming holiday season. Those scrapbooks don't just make themselves, I found out! LOL!

 

[Kat77]

Forget the scrapbooks.... If anything ever does decide to make itself, I'd like it to be dinner! Or possibly the laundry

 

[Brightsy]

Laundry, what's that? *jk*
I just wish that my eldest would stop tossing his clean clothes all over the plave when he's looking for his favorite shirt...the worst part is then he just puts them in the hamper. I hate trying to do laundry only to find a hamper filled w/ clean shirts!

 

[Piper]

Laundry, what's that? *jk*
I just wish that my eldest would stop tossing his clean clothes all over the plave when he's looking for his favorite shirt...the worst part is then he just puts them in the hamper. I hate trying to do laundry only to find a hamper filled w/ clean shirts!

When I went through that with my kids, I turned their laundry over to them. We had a "how to do your laundry lesson" and then it was totally up to them. You need to be prepared for them to be angry with you when they don't have what they want to wear clean. You also need to be prepared to appear in public with them looking pretty scruffy at times!

It only took three months of each doing his or her own laundry before the problems disappeared. You need to let them do it long enough to see what it is really like. This has the added benefit of preparing them to take care of their laundry in college!.....and beyond!!!

 

[disneymom3]

Hi all. I have posted here once or twice. But today I am reeling. DS has been going through crazy hard times that have now gotten drastically better. In August we had one night where he was really upset and hurting himself. He has hurt himself before--pinching, biting and hitting his head with his hand--but this time, he would not stop when I asked him to. We went to the ER at our children's hospital and ended up being referred to a place with an outpatient hospital program. They did not admit him to their program. We felt it would be counter productive since at the time, he would not leave me.

He has struggled with sensory integration disorder pretty severely for quite awhile. He also has anxiety disorder which had hugely peaked and what is the thing that set off all of this.

Over the last couple of months we have had a lot of appts, here, there and everywhere. He is working with a cognitive therapist and doing really well with it. He has had his meds adjusted and is feeling much much better.

However, last night, we received the results of the outpatient evaluation they did at the place I mentioned above. He had an hour and a half session with a psychologist. It would have been longer but DS refused to do some of the activities. The summary we got says he has Anxiety Disorder, which we knew, ADHD, which I expected and ASD-NOS. That one rather threw me.

I just feel really lost. It seems like all of those conclusions were reached really quickly to me. An hour and a half to diagnose ASD? Really? Did most of you have a neuropsych or just a psychologist? I will accept whatever the answer is. I can see some characteristics for sure. He is pretty rigid, when he starts to say something he CANNOT stop, changes in routine are really hard, he has mildly obsessive stuff going on. He doesn't get that doing certain things make people around him mad and that saying you're sorry after the fact is all well and good but people might still not feel the way HE wants them to.

We have homeschooled all along. He is 10 and is in 5th grade. He is a really strong reader, has a great memory for science, pretty good for history and is really bad in math. I am wondering, if I again should change what I do for school. He also can't write. He can dictate, but his actual printing is illegible to anyone but me and I can barely read it. His verbal skills score off the charts but you would never know it if you ask him to write as he won't or can't even compose a complete sentence.

Without any school resources, I feel like I am lost at sea. Any ideas of where to look?

 

[Kat77]

DisneyMom3,
First It is going to be okay!
Second, I emailed you info but I have no idea if it sent. Let me know if nothing made it.