Exhausted from parenting/ASD children/Welcome to Schmolland!

[ppony]

ppony, I'm glad that analogy made you feel better! Here's another one I heard the other day on tv about worrying about the worst case scenarios. They said, "It usually never happens and if it does then you've had to live it twice!" That hit me hard! They also thought my son was having petite seizures when he was in preschool because he would just check out. The therapists would say "He's not here, he's completely gone for a few seconds at a time!" We had him tested but he wasn't having seizures, just having HUGE ADD moments! Don't let it scare you.

I can cope w/ ADD. I just color my hair more often now. That's EXACTLY what is/was happening. He just checks out. Sits in a daze or whatever and is non-responsive until boom, he's back. I'm hoping it will be just as you discovered. But if not... as you said, don't worry until you have to. What's the point. It won't change anything and will only cause you more angst.


SO...I hope it's OK to ask questions here of others. ANyone that has a child w/ food texture issues? Like my DS has a strong tendency towards crunchy. We can't get him to eat much else. On a rare occasion he's eaten watermelon and more frequently oatmeal, and on occasion he'll eat nuts (pistachios lately), but that's it. Any tips on getting more nutrition in there? I have yet to try squashing fruit and trying to sneak them in his oatmeal. He's hit and miss on oatmeal as it is and I just can't think of another vehicle I could use to sneak nutrition in. Oh he does drink juice (he and his sippy are inseparable). We only give him a few cups a day of that. His teeth are in bad shape as it is and will need to be capped in a month. I've tried the juices w/ the veggies in them but it seems to give him diaper rash.

Thank you SO much parents that have "been there" and willing to help. As was said, until you are faced with it, you truly can't comprehend.

 

[kampfirekim]

kampfirekim, your little guy is ADORABLE! I'm so glad you posted pics! I especially love putting a face to the girl that makes me laugh! Thanks!

ppony, to you! I think the initial move to Schmolland is the hardest part! Also, the "not knowing" the future always made me think of the worst case scenario. None of my worst fears ever happened and I wish I could go back and just enjoy my son's early years! I agree with bookwormde, your son is so young and there is so much developing that he'll do! I'll bet you will be amazed at his accomplishments. One person told me, remember that ASD has no stop sign like other disorders, nobody can tell you they will only go "this far"! And if they do, they are probably wrong! When my son was 3 the experts told me their goals for him were to someday go to a regular school with an aide. Well, not only did he surpass those goals but has gone beyond anything I ever dreamed of! He still has challenges but he's not easily identified as ASD anymore! He's 11 yrs old, gets straight A's and just had his IEP dropped! Those are things I never dreamed of! He doesn't struggle with executive functioning skills, like my ADD child, and I think that has made a huge difference for him!

I'll tell you what my DH always said to me when I started worrying. He would say "Don't write the end of his life story when he hasn't even lived it yet." What he meant was to enjoy his life and stop worrying about "someday". I still struggle with this, even now, but I'm TRYING not to worry! Hang in there and remember we are all here for you!!!

Thanks! Not a great pic of me, but what can you expect after I chased the little Schmutcharoo for what felt like 100 miles at a full sprint! (Yes, it took the buddy, my mom and me to keep him inside the fence!)

I agree the early days in Schmolland are the roughest. There is just so much to process and your emotions are stretch to their absolute limit! I especially love your DH's quote. I plan to show that one to DH. He worries over the futre more than I do. I try to remind him that DS has a lot of years ahead of him to continually develop and progress. He's come so far already. I actually look forward to finding out what the future holds for him.

KampfireKim LOVE the pictures!

DS is playing soccer for the first time this year (I don't think I ever formally introduced and jumped right in) He's 7 diagnosed with Asperger's at 5. He's very bright but socially around 4 1/2. He plays soccer in our city league which is very low key. And his coach is a teacher at school who is engaged to his current teacher, so it's great."

Now that you are formally introduced......WELCOME! Glad you're here! Although i do believe you've been around here for a little while already. I agree that watching little Schmutch kids play sports is one of the most entertaining things you'll ever see! Especially when someone else is doing the chasing!

Welcome PPony! I am so glad you found this thread! .
http://www.wrongplanet.net/article295.html
WrongPlanet: When were you diagnosed?
Temple Grandin:Well, I'm fifty-eight so I was originally diagnosed as brain damaged. And I had the full blown symptoms. I had no speech until I was three and half to four years old.

Above is a link and an excerpt from an interview with Temple Grandin. If you do not know who Temple Grandin is yet PLEASE watch a video lecture on youtube. I find it facinating that Grandin was such a late talker. Do speech therapists ever reference this to parents of nonverbals? I know that I'd want to hear this just for reassurance.

I did not sleep very well last night so hopefully someone else will address this better I can. It is okay to let things go! Anyone doing everything perfectly is either lying or deluded. If brushing every 90 minutes is too much to handle, make a schedule that will work for you, do that instead and DO NOT SWEAT IT ANYMORE. If the kid won't eat anything green, give him suppliments. Can't tie his shoes, buy velcro or ez lacers. If you focus all your attention on what a child can't or won't do, you quit enjoying the child because all you ever do is frustrate him. We get so many specialists throwing stuff at us to work on, it's overwhelming for both us and the kid. Make a list of what is most important right now and effecting everyday life. Pick two and that is where your focus should be. Everything else can wait. I am not saying the other things don't matter, everything will have it's moment eventually.

Seems to me you addressed it just fine! I completely agree with you. You just can't sweat EVERYTHING! You'll go nuts and so will your family. Great advice to just take first things first. You're absolutely right on about focusing on strengths and not weaknesses! If you only look at what they can't do, you will suck the joy out of being a parent and make the child miserable in the process. This is also true for a typical child. They too have different gifts and abilities!

I haven't had a chance to check out your link, but I plan to later on this evening.

OH....anyone else cry at reading that??? That's a beautiful way to think. I'm going to adopt it!!!!
I also NEEDED it today. The country teacher and OT came today for their last session of the school year and the OT was very concerned that Daniel zones out and while doing so, tenses, not relaxes. So she was recommended a possible neurologist to see if he might be having seizures. Of all the things said to me in the past year and a half, that was the one thing that struck actual fear in my heart.

THANK YOU ladies! It was exactly NOW that I needed to find this thread. I've had no one but the therapists to talk to and my DH doesn't exactly take a proactive roll in helping so I'm feeling pretty alone at the moment.

The thought of seizure IS scary. My brother has suffered from seizures over the years, so I completely understand where you're coming from there. I'm so glad you found us too! Everyone needs a listening ear sometimes.... or in our case ....EVERYDAY! Try to be patient w/your DH, hopefully he'll come around. Sometimes, it's harder for the dad's to come to terms with what is going on. Not to generalize too much, but it is in their nature to protect their families and fix what needs fixing. This is just something they have no control over and it is very difficult for a dad to deal with that. All of us praying Schmollandites will remember you in our prayers.

KFK's photo's are all action shots, I got sympathy exhaustion just by viewing them! LOVE the photos!

Our meeting went great yesterday. DS9 was accepted into the district program we were hoping for. I am so psyched! We met the teacher and even got the okay to send out flyers to the other parents in hopes of starting up a social group this summer for the kids in the program.

DS9 has a two week social skills camp but no one else is signed up for anything except music tutoring. Usually, I teach VBS at church and the kids attend that but last year I had so many issues with DD11, I am not even bothering this year. Every time I left my classroom I caught her roaming the church. My older daughter also ran into her constantly and escorted her back to her group. It's just soooo not worth the frustration! So we will just be chilling here. Summer flies by much too fast.

Thanks! There are mostly action shots, because that's him 24/7....or at least until the Clonidine kicks in and stops him in his tracks! I actually felt sorry for his buddy! I ALWAYS feel sorry for his buddy at Buddy Sports! You wouldn't believe how hard the muscles are in his legs. His OT marvel at it every week!

Congrats on the district program. I hope it all works out great! A social group sounds fantastic. What a great way to work on those skills! I agree summer flies by much too fast! We will be going to a 5 day day camp next week for kids of a spectrummy persuasion and their siblings. It's our first time so I hope it works out well. They are having a parents luncheon during camp hours, so I am looking forward to that! Hope it's worth the drive. The name is Camp Puzzle Palooza...how cool is that!? DS' private ST has horses and will be bringing a couple for the kids to ride.

 

[kampfirekim]

Kat77, I just read some of the Temple Grandin interview. My fave quote so far is: "I would think in an ideal world, you don't want to have people who cant talk, but on the other hand, you definitely don't want to get rid of all of the autism genetics because if you did that, there'd be no scientists. After all, who do you think made the first stone spear back in the caves? It wasn't the really social... people".

In fact, I loved it so much I just had to put it on my Facebook page! Thanks for sharing!

 

[C&G'sMama]

Now that you are formally introduced......WELCOME! Glad you're here! Although i do believe you've been around here for a little while already. I agree that watching little Schmutch kids play sports is one of the most entertaining things you'll ever see! Especially when someone else is doing the chasing!

Well yeah, I've been around awhile (my kids will tell you at least 100 years) The intro was for some of the folks not familiar with Koolaidmoms and myself from the Behavior Challenge Thread.

Our poor friend is really struggling with her DD. She knows there is something but doesn't want to admit it, so she makes appointments and cancels them. Her husband is actually supportive and has said to her "so now are you ready to make an appointment".

So we all laugh together and sometimes cry together and we'll be there when she's ready. It is wonderful to have this community to come to. All of our kids are different. Mine isn't a runner but he never stops talking, ever, even in his sleep. It's emotionally exhausting. Yes I'm glad he can talk, but there are days.....

Oh well, that's why there's wine and Ben and Jerry's.

 

[ppony]

Oh well, that's why there's wine and Ben and Jerry's.

I found butterscotch oatmeal cookies today. Uh oh!

Adding ....
I'm going to read the Temple Grandin stuff as my time permits over the coming few days. I see from her site though that she is having a conference here next week. Serendipitous? While I gather info and read, does anyone recommend that I go if I can? Or do you feel you got as much out of it in reading. It's not cheap (which I wouldn't expect anyway) to go and I'm scared to go alone.

 

[Brightsy]

KFK! So many cute pics!!!! I love how he looks like he's deep in the action! Such a look of happiness!

 

[mommatomase]

I guess I am the odd parnet out, summer is the recharge time for my DS10. No school pressure. We have several good camps that he likes (most days). One is a very good camp for special needs kids (of all types) and the other is a camp at the local natural history museum (his "real world" primary area of interest is dinosaurs). Also big family vacations (this year 2 trips to the outer banks).

Bookwormde

I like summer too. With Cyber schooling it gives me time to be Mom and not always "mean" teacher... and we both need a break from it all. We love to swim and just do things that he wants to do... I think for us it is also the only child thing... I don't have to split myself... I still can't figure out how you other Mommas do it...

 

[2luvmickey]

It's so nice to hear other people in the same boat! Some days the seas are smooth, other days, huge waves.

My DS 18 is newly diagnosed with Asperger's. Finally, the puzzle pieces fit together, and we understand a bit more on how he views the world.

Ready to go off to college (luckily, he will have his older brother there to help acclimate), he still seems very clueless. Just the other day, he had his first fender bender. Fortunately, there was no damage to either car, but he barely spoke to the person. I happened upon the scene because I was going the same way to pick up DS 15. What was upsetting to me was my DS 18 then went into shut down mode and couldn't talk about what happened. He becomes very angry and just can't handle it.

I have cards that I will have him carry that explains he has Asperger's and why he won't make eye contact, or may not answer questions right away. It also offers suggestions on how to deal with the person such as moving them to a quiet place and have minimal physical contact.

I have to remind myself that many people have found their way in the world for a long time before being diagnosed with Asperger's. It still doesn't stop my from worrying about my child.

 

[bookwormde]

we have a soccer buddy program in our area also and it is great for both our kids and the buddies.

Seizures, I know it can be serious but in the vast majority it is just clinicians who do not have a clue, our kids are often in their own world both physically and mentally so people think there is "something wrong", no that is one of their great gifts, to immerse themselves within their mind.

A year or so ago we had a long thread on spectrum diets, it is amazing how similar many of our kids diets are, just make sure he is getting a good multivitamin and relax.
bookwormde

 

[mommatomase]

I found butterscotch oatmeal cookies today. Uh oh!

Adding ....
I'm going to read the Temple Grandin stuff as my time permits over the coming few days. I see from her site though that she is having a conference here next week. Serendipitous? While I gather info and read, does anyone recommend that I go if I can? Or do you feel you got as much out of it in reading. It's not cheap (which I wouldn't expect anyway) to go and I'm scared to go alone.

Ppony... welcome!! Sorry you are having such a rough time... we are here... always... Never leave Schmolland...

I WISH I was close to you... I want to see Temple Grandin sooooo bad!!! I have read two of her books and am planning to read more... she is amazing!!!

One other of her quotes is... "Never let them zone out." Get their attention, sing, jump around, but don't let them zone out...

Kat77 had a great thing... priorities... what matters most... to YOU as parent. My son can NOT tie his shoes (will be 10 in 2 weeks)... who cares??? that is what velcro is for... What is important for us is that his balance and coordination improve so that is where our energy goes...

HUGS!!!

 

[mommatomase]

KFK... your little goat-dog-boy is adorable!!!!

And about your hair... isn't that the national hairdo??

About all that running... we should get our boys together... mine doesn't run at all... and if I take his hand and make him run, he yells to slow down that he is getting butterflies in his stomach...

 

[disneymom3]

Hi all. I have "met" some of you on the Beh Challlenge thread but for those I haven't met, I am Julie and I have three kids. Middle one has SID and....something. Something else is just not right. I lean toward asperger's but his social with peers and adults he knows well is really good. So, that doesn't seem to fit. He does NOT get how his behavior affects others and if his tolerance level is exceeded, all bets are off. We are hoping to get into see a child psychologist soon. It's been something we have been trying for many months.

To make it all just that much more complicated, I have MS and possibly rheumotoid arthritis. We are waiting on some blood tests. But there is "something" there other than the MS. We are big on "somethings" in our house.

I have not been able to read the whole thread yet, but it sure feels like home. I will post more after I have read more...or not. Maybe I will just jump right in.

Oh, and I homeschool. Somedays I am eternally grateful for that and other days, I wonder what on EARTH I was thinking.

 

[Tarheel girl 1975]

So kind of a rough day here. We were driving home from school and Noah was talking about his day and he said that no one plays with him- and my heart broke. This is one of my biggest worries. That he won't have any freinds and feel left out. It's hard though since he doesn't understand that most people don't want to talk about numbers and math all day. I really have to help him with his social skills, but I feel completely hampered by my own weaknesses and issues in this area.

As for the summer, Noah goes to school year round so he has 3-4 weeks off every 9 weeks. I love it. It gives us just enough time to relax and regroup without completely foregetting about his school routine.

 

[bookwormde]

What sort of social skills program does he have at school, does it include individual sessions, small group, an classroom and public area generalization? Typically "friendship skills" are some of the first mid level skills that are done.

Here is a link to the leading clinicain in the world on the subject of the social skills component of AS. You can spend a month just going though the site and infomation.
I have been to her seminars and workshops and she really "gets it" in regards to social skills (not so much in regards to EF)
http://www.socialthinking.com/

bookwormde

 

[Tarheel girl 1975]

What sort of social skills program does he have at school, does it include individual sessions, small group, an classroom and public area generalization? Typically "friendship skills" are some of the first mid level skills that are done.

Here is a link to the leading clinicain in the world on the subject of the social skills component of AS. You can spend a month just going though the site and infomation.
I have been to her seminars and workshops and she really "gets it" in regards to social skills (not so much in regards to EF)
http://www.socialthinking.com/

bookwormde

Thanks for the site. Unfortunately, school isn't providing any social skills right now. I did just get speech put back in his IEP since he has issues with pragmatic speech and that is supposed to be done with a small group. In a lot of ways my son is like me and I have a hard time reading social cues/body language too. So I feel under qualified to help him and private social skills classes are expensive.

 

[NJMomma]

great pics KFK!

ppony, welcome to our Schmutch neighborhood Please don't lose hope, your son is still very young, and so much can change (not promising it will, but it can!). My son is leaps and bounds better now than at age 2. DS was also tested for seizures (EEG) but like iwrbnd's DS, my son was not seizing - just not paying attention!

Yesterday I ran into a mom I know who has a kid in my DS's math class. She told me her daughter comes home nearly everyday complaining about how this teacher treats my DS. He complains about this teacher, but hearing it like this makes me feel . School will be over in 16 days (but who's counting!) and then he will be done with her. This girl said to her mother "If I understand Dan has a disability, why doesn't Mrs. Q (the teacher)?" Why indeed..... I am not planning to do anything about it though, b/c like I said, only 16 days to go, then he will be done with her. But UGH!!

 

[Daisy&Max]

Hugs to all my Schmolland friends that need them. I am off for the weekend. I get to leave Schmolland for about 48 hours. I have farmed out my Schmutes to friends and family so that I can recharge and regroup. I wish I could take all my Schmolland parents with me.

Good luck this weekend!

Daisy

 

[iwrbnd]

Hello to all the new Schmollandites & to the "townies"! (That's what my town calls the locals that have been here forever!) I have so much to say but my computer got hacked & I'm typing on my itty bitty phone pad! Hopefully I'll be back soon! Hugs to all!

 

[ppony]

I'm still reading ladies! It's been a FAST last few days. DS2 had his dental surgery moved up to next wee so we had a pre-op today. There we discussed him getting in to see a neurologist (which I made an appt for in July) and if they might be able to do the more advanced hearing test while Daniel is out next week or if that will have to wait. Oh...soooooo tired.

My Temple Grandin books came today and I've not even gotten out of the forewards w/o tearing up. THANK YOU for the recommendations!!!

I'll read more of the thread tonight. I'm trying to get my family to understand that though I'm in front a computer...a LOT it seems, I'm reaidng, reading reading. Researchin, researching researching. Then when I'm not doing that I'm painting, painting, painting.

Big hugs!

 

[melissa37]

I love this thread! I've been reading from the beginning and just have to say it's wonderful to read about my life in other people's writing.

I finally felt the need to post after our return from our supposed to be wonderful Mommy/Son trip to WDW! I keep forgetting that the best laid plans don't mean much in the land of Schmolland! Can I just say, I need a vacation from my vacation.

My Schmutch boy is 7 and on the severe end of the spectrum. I also have a NT DD5. Since my parents were taking DD5 on a special trip as she isn't in school yet, I decided it would be the perfect time for DS and I to run away for a couple of days by ourselves. Oh why do I come up with these ideas?

I can now say that I have lived through the fire! Yes, a full blown autistic meltdown on an airplane! I have learned from some really nice flight attendants that many will forgo the turn electronics off for landing if you tell them why it might be a problem! In a couple of weeks I'll be able to look back and have a very funny story of how we almost diverted our plane from landing because we were having a meltdown and wouldn't stay in our seat with the seat belt on!! But it will take a bit of time to recover from the trauma.

I am also grateful that I prefer to sit in the back of the plane with all the other families who are surprisingly understanding and willing to offer drinks when it's all over.

It only took mommy 2 days out of a 5 day trip to recover from this incident. At least I learned I can travel with him by myself and survive, but now I know that taking backup for my peace of mind is not a bad idea for a while.

At least I'll get a trip out of the deal, I need to plan another trip to do everything I had to skip this time (although if I don't ride PP, TTA, or IASW for awhile I'll be fine with that.)

I never thought I'd be so glad to return to the land of Schmolland from WDW, but it's good to be home. I'm not so sure how long my nerves will take to settle down though.