Exhausted from parenting/ASD children/Welcome to Schmolland!

[kaffinito]

Just got back from Target. It was pretty uneventful until he began yelling "Help me, help me, help me!" to the top of his lungs! I quickly realized he had an itch he couldn't get to, but I could only imagine what the sight looked like to an innocent bystander. A 45 lb+ 5 1/2 yr old stuffed in the seat of a shopping cart, yelling "Help me!" reapeatedly to top of his lungs. I'll tell ya' , these little Schmutch kids are comic gold.

This made me think. I would love to hear everyone's diagnosis story. How and when did you find out you were moving to Schmolland? Anyone else want to share your story?

Just getting caught up a bit here.

When DS17 was little he was definitely NOT a "normal" child. He babbled and talked, but not to me. He would talk at me or around me. He didn't know what my name was - as if "Mommy" was too difficult for him. I took him to the school to have him evaluated when he was three, and to see a shrink. The shrink diagnosed him with ADHD, and he was put on meds. He was in special behavioral schools until he was 11, and then his school therapist wanted him evaluated for BPD. He got on meds for that, and miracle of miracles, was functioning a LOT better after that.

Then came the kicker. Just a few months after he had started the BiPD meds, the therapist, teachers, his shrink, and crap, I think even the bus driver said that they thought he was autistic. So I finally knuckled under, and agreed to have him evaluated for autism. I didn't really want to - since autism is not something you can control or fix with meds, but agreed anyway. At the same time, DS then 4 was getting evaluated for autism too. Not a happy two weeks, let me tell you!

So he got his evaluation from a specialist, and it only took her 10 minutes to call me in the room to tell me that he was autistic. I was devastated. A week after that and they told me that youngest DS was also autistic.

I cried for a month. And that rather long winded story is how I began my adventures in Schmolland.

 

[elan]

Hi all, I've seen this thread and have finally decided to jump in. Life in our schmolland is not fun right now. Heck I didn't even know where we were living until 8 monthes ago. I knew we were living somewhere but didn't know the name. My DD was 12 when we learned she wasn't a problem child but a child with a problem.

After struggling for years we now have a BUFFET of diagnosises. (not sure if that is a word). But as everyone here knows we didn't get a serving of one thing (aspergers) we got a plate full. ocd, odd, anxiety to name a few.

Our problem of the day is her fat legs. Well she thinks they are, and if she doesn't get them fixed before our trip in June she isn't going and she thinks no one else should go too. Needless to say her legs are far from fat but until we can deduce what is really bothering her she'll complain about her legs.

 

[iwrbnd]

Just getting caught up a bit here.

When DS17 was little he was definitely NOT a "normal" child. He babbled and talked, but not to me. He would talk at me or around me. He didn't know what my name was - as if "Mommy" was too difficult for him. I took him to the school to have him evaluated when he was three, and to see a shrink. The shrink diagnosed him with ADHD, and he was put on meds. He was in special behavioral schools until he was 11, and then his school therapist wanted him evaluated for BPD. He got on meds for that, and miracle of miracles, was functioning a LOT better after that.

Then came the kicker. Just a few months after he had started the BiPD meds, the therapist, teachers, his shrink, and crap, I think even the bus driver said that they thought he was autistic. So I finally knuckled under, and agreed to have him evaluated for autism. I didn't really want to - since autism is not something you can control or fix with meds, but agreed anyway. At the same time, DS then 4 was getting evaluated for autism too. Not a happy two weeks, let me tell you!

So he got his evaluation from a specialist, and it only took her 10 minutes to call me in the room to tell me that he was autistic. I was devastated. A week after that and they told me that youngest DS was also autistic.

I cried for a month. And that rather long winded story is how I began my adventures in Schmolland.

I'm sorry you had 2 diagnosis in a week! I don't know about you but the 2nd diagnosis was harder for me than the first! I also cried for weeks. It was a dark time in my life! When we were at the hospital and they said "autism" I literally couldn't breathe! I remember thinking I was going to have to get a paper bag or something so I wouldn't hyperventilate! As sorry as I am about your diagnosis day I have to say I LOVED your post! The part about the bus driver just put me over the edge! You have a great sense of humor! I know what you mean about being more scared about autism than the other diagnosis, though. The week my son was diagnosed with autism the doctor called because his blood work pointed to bone cancer! There were a few days before more tests revealed he was okay. I actually took the cancer news better than the autism one! Crazy but true!

 

[iwrbnd]

Hi all, I've seen this thread and have finally decided to jump in. Life in our schmolland is not fun right now. Heck I didn't even know where we were living until 8 monthes ago. I knew we were living somewhere but didn't know the name. My DD was 12 when we learned she wasn't a problem child but a child with a problem.

After struggling for years we now have a BUFFET of diagnosises. (not sure if that is a word). But as everyone here knows we didn't get a serving of one thing (aspergers) we got a plate full. ocd, odd, anxiety to name a few.

Our problem of the day is her fat legs. Well she thinks they are, and if she doesn't get them fixed before our trip in June she isn't going and she thinks no one else should go too. Needless to say her legs are far from fat but until we can deduce what is really bothering her she'll complain about her legs.

Hello and welcome! We also have a buffet to go with our diagnosis, too. My son has had some mild OCD, tics and anxiety. I think all that neurological stuff just clumps together after awhile!

Good luck with the fat legs thing! Self-evaluation is a tough one for these kids. My son is on the other end, though. He thinks he's the best at everything! He wanted to get a soccer scholarship for college but he never made a goal in his life! He's gotten much better in high school and is starting to be more realistic! How old is your daughter now? You mentioned 12 at diagnosis.

 

[elan]

Thanks for the welcome. She's still 12.

She's a gifted swimmer who today doesn't want to wear a swimming suit. She couldn't make it into the pool today, didn't want anyone to see her in it. She LOVES the water and swimming (now we know why). Normally she's the first one in and one of the last ones out. It makes me sad.

 

[leebee]

BFF... double brain fluff... or best friends forever

 

[kampfirekim]

Wow! Leave home for a day and look what all I missed! No fair, it's taking me for ever to catch up with you girls! I don't like to miss a moment of the happenings in Schmolland with my Schmutch-Dis sistas!

I have to admit that I was very greatful to find out that this child is a girl. I fully realize that girls are affected by autism as well as boys, but my other 2 girls are typical and I am just praying that this one is too...sometimes I feel guilty for feeling that way. I love my son just as much as my daughters...but the girls are so much easier.

Steph, there is absolutely no reason at all for you to feel guilty. We all know exactly what you mean by that statement. My typical is sooooo much easier than my neuro-challenged Schmollandite (BTW, my typical has ADHD as well). I could handle five of him easier than my autistic/ADHD son. Just like you said, I love them both the same, but my neuro-typical is a breeze by comparison.

Thanks, Kim! He's been pretty good since then. I think the sushi should wait until AFTER Disney, but he should be going unless he does something else horrendous.

After he had apologised he asked, in a very small voice, if I really had cancelled the ADR's, and thank me profusely when I told him that I hadn't, so I think the strategy worked.

Sometimes it's hard to know what will and won't work as discipline, but we do try.

You're probably right. The Sushi excursion may give you leverage at WDW in the discipline department. I'm glad he's doing better. My DS doesn't respond to reasoning, but I too withhold things he wants. Usually it's whichever toy he's attached to at the moment or something like that. Right now that's about the best we can do. We do use timeouts. Sometimes that works pretty well. I agree that it is hard to know what will work and what won't, and it can change from day to day. I know you try, that's evident. I do too. If I didn't I can't imagine what he'd be like!

BFF moment today after a little shopping I get in my car and put the key in the ignition.. I then proceeded to search for my keys for 5 minutes and I got really frustrated about it too

I'M NOT THE ONLY ONE! YEAH! From some of the previous posts, we're not the only two either! Keys, glasses, driving.... soooo funny. I am so grateful for this thread. I can say anything, admit anything and no one flames me, mocks me or judges me. AWESOME!

:
So he got his evaluation from a specialist, and it only took her 10 minutes to call me in the room to tell me that he was autistic. I was devastated. A week after that and they told me that youngest DS was also autistic.

I cried for a month. And that rather long winded story is how I began my adventures in Schmolland.

I only have one autistic, but I know what you mean. My DH and I both cried until I thought we'd never stop when we first placed DS in a special ed class. I don't want this to sound the wrong way, but when I looked around the room I kept thinking to myself, "My baby DOES NOT belong here." Then one week later we were faced with Special Olympics. I really didn't think I'd make it through that day without a breakdown. My eyes were bloodshot and swollen for at least a month straight. At that point we had no diagnosis only met criteria for "Developmental Delay". By the time he was officially diagnosed with autism, I was fully prepared to hear it. I already knew in my heart he was autistic. I cannot imagine what you must have felt to hear it twice back to back. That had to be almost unbearable. I nearly cried when I read your story because I have not forgotten what that moment feels like. It's much to big to wrap your head around all at once. It takes time to absorb what all of it means and "Where do I go from here...what do I do next?" As you will learn here, long posts are welcome. Whatever it takes to tell your story, get something off your chest, vent, seek advice, anything at all...we all care and want to help, listen...anything you need is OK with us. Thanks for sharing your story with us.

Hi all, I've seen this thread and have finally decided to jump in. Life in our schmolland is not fun right now. Heck I didn't even know where we were living until 8 monthes ago. I knew we were living somewhere but didn't know the name. My DD was 12 when we learned she wasn't a problem child but a child with a problem.

After struggling for years we now have a BUFFET of diagnosises. (not sure if that is a word). But as everyone here knows we didn't get a serving of one thing (aspergers) we got a plate full. ocd, odd, anxiety to name a few.

Our problem of the day is her fat legs. Well she thinks they are, and if she doesn't get them fixed before our trip in June she isn't going and she thinks no one else should go too. Needless to say her legs are far from fat but until we can deduce what is really bothering her she'll complain about her legs.

Welcome! Glad you decided to take the plunge and join us. Yes Buffet is a word. Smorgasboard is too....or in our case schmorgasboard! Someone previously posted that they believe that all of these neurological oddities run together. I completely agree. DS definitely shows OCD behavior. He can be rather "Monk-ish" with his rituals and need to do things a certain way. I don't think I can offer anything on the perceived fat legs, but I do hope it works out soon!

BFF... double brain fluff... or best friends forever

Either one is Ok with me! Both is OK too!

 

[BreTyPres87]

I look for my keys all the time, only to realize that I am holding them.

I frequently search all over the house for my sunglasses just to discover them on top of my head.... that's like a once a week occurance here. Don't know why I don't just check there first!

I get BFF everyday! Yes, I've looked for keys that were in my hand, passed buildings I was driving to and even left a kid or two at church!!!

lol i'm glad i'm not alone.. I'm 22 and I have the brain of an old woman, they've got to do a study to see what happens to the brain after kids!!! lol

I'm sorry you had 2 diagnosis in a week! I don't know about you but the 2nd diagnosis was harder for me than the first! I also cried for weeks. It was a dark time in my life! When we were at the hospital and they said "autism" I literally couldn't breathe! I remember thinking I was going to have to get a paper bag or something so I wouldn't hyperventilate! As sorry as I am about your diagnosis day I have to say I LOVED your post! The part about the bus driver just put me over the edge! You have a great sense of humor! I know what you mean about being more scared about autism than the other diagnosis, though. The week my son was diagnosed with autism the doctor called because his blood work pointed to bone cancer! There were a few days before more tests revealed he was okay. I actually took the cancer news better than the autism one! Crazy but true!

I took diagnosis 3 hard for my son something about it broke me down which was weird seeing as I was the one who originally noticed anything.. I can't imagine getting the news of cancer thank goodness it was false!

Hi all, I've seen this thread and have finally decided to jump in. Life in our schmolland is not fun right now. Heck I didn't even know where we were living until 8 monthes ago. I knew we were living somewhere but didn't know the name. My DD was 12 when we learned she wasn't a problem child but a child with a problem.

After struggling for years we now have a BUFFET of diagnosises. (not sure if that is a word). But as everyone here knows we didn't get a serving of one thing (aspergers) we got a plate full. ocd, odd, anxiety to name a few.

Our problem of the day is her fat legs. Well she thinks they are, and if she doesn't get them fixed before our trip in June she isn't going and she thinks no one else should go too. Needless to say her legs are far from fat but until we can deduce what is really bothering her she'll complain about her legs.

welcome and i'm sorry you're having such a hard time, does she see a psychologist who could possibly get to the root of why she thinks her legs are fat? I hear about so many 12 year olds with body issues which makes me so sad, I hope she can understand that there's nothing wrong with the way she is!!

 

[persimmondeb]

As to the "fat leg" thing, have you had her look in a full-length mirror? It sounds silly, but I sell formal wear (bridal gowns, prom dresses, etc.) and have noticed that many young girls look down, which of course gives you a very odd perspective, rather than actually looking in the mirror.

We have no mirrors in our dressing rooms, and we will be trying to get them to come out and actually look, since they are convinced from their downward view that they look enormous and funny to boot. The view in the mirror is often somewhat reassuring.

 

[mommatomase]

kaffinito... I am sorry that both diagnosises were within 10 days... WOW... no time to breath... hugs!

I knew in my heart of hearts for a long time that DS had traits of Autism but he talked too much... in my opinion. At that point you really didn't "hear" about Aspergers... For us, it was somewhat a sigh of relief that we were not to blame for his quirkiness and sensory issues.

But, having only one child, I had no one to compare him too either...

Welcome.

 

[mommatomase]

needing a velcro wall seem minute. Those days of ripping my hair out to get one sentence written seem minute. Those days of non-stop wiggling, stimming and hopping when times call for calm seem minute.... these are the days I hang on too... and tuck away for the not-so-good days...

I had mouth surgery yesterday (nothing serious). Dh and Ds took me to the oral surgeon and both kissed me "see ya later". Ds grabbed my arm and said, "Should I hold your hand?" I assured him I would be alright. After surgery and anistecia (sp) I was a bit groggy and silly. Ds took my hand and said, "Come on Momma, time to go home and take a nap. I'll take good care of you... oh, and Dad will too." He thought he could push my wheelchair. When we got home, he couldn't do enough for me. In the afternoon, we went outside for some sunshine and he carried my lawn chair for me and even held my arm as I sat in it. (by this time I was fine, but was eating up his calmness) We sat outside for almost two hours and he never wandered more than 30 feet away, always making sure his Momma was OK...

"Different Day... Different Stuff"

Those little windows are wonderful to see through...

 

[kampfirekim]

For us, it was somewhat a sigh of relief that we were not to blame for his quirkiness and sensory issues.

Amen my friend! We got our tears out of the way long before the official Dx. The officialness of the autism was a relief for me too. There was a name for it. I really WASN'T a bad mom afterall. Now help will be available. I know exactly where you're coming from.

needing a velcro wall seem minute. Those days of ripping my hair out to get one sentence written seem minute. Those days of non-stop wiggling, stimming and hopping when times call for calm seem minute.... these are the days I hang on too... and tuck away for the not-so-good days...

I had mouth surgery yesterday (nothing serious). Dh and Ds took me to the oral surgeon and both kissed me "see ya later". Ds grabbed my arm and said, "Should I hold your hand?" I assured him I would be alright. After surgery and anistecia (sp) I was a bit groggy and silly. Ds took my hand and said, "Come on Momma, time to go home and take a nap. I'll take good care of you... oh, and Dad will too." He thought he could push my wheelchair. When we got home, he couldn't do enough for me. In the afternoon, we went outside for some sunshine and he carried my lawn chair for me and even held my arm as I sat in it. (by this time I was fine, but was eating up his calmness) We sat outside for almost two hours and he never wandered more than 30 feet away, always making sure his Momma was OK...

"Different Day... Different Stuff"

Those little windows are wonderful to see through...

Velcro Wall!? There's a thought! Seriously, that has to be the sweetest story I've ever heard. Moments like that make all the "schmollish" moments fade into the background don't they? Yes, I got a little tear in the corner of my eye. Thanks for sharing. You've made my day and further reinforced the hope and faith that I have for my own DS. Empathy...wow what a breakthrough! You must be on a cloud after such a show of love and affection. "DD...DS...def!"

I've been lurking a little today, but this just got me!

 

[iwrbnd]

needing a velcro wall seem minute. Those days of ripping my hair out to get one sentence written seem minute. Those days of non-stop wiggling, stimming and hopping when times call for calm seem minute.... these are the days I hang on too... and tuck away for the not-so-good days...

I had mouth surgery yesterday (nothing serious). Dh and Ds took me to the oral surgeon and both kissed me "see ya later". Ds grabbed my arm and said, "Should I hold your hand?" I assured him I would be alright. After surgery and anistecia (sp) I was a bit groggy and silly. Ds took my hand and said, "Come on Momma, time to go home and take a nap. I'll take good care of you... oh, and Dad will too." He thought he could push my wheelchair. When we got home, he couldn't do enough for me. In the afternoon, we went outside for some sunshine and he carried my lawn chair for me and even held my arm as I sat in it. (by this time I was fine, but was eating up his calmness) We sat outside for almost two hours and he never wandered more than 30 feet away, always making sure his Momma was OK...

"Different Day... Different Stuff"

Those little windows are wonderful to see through...

What a fantastic story! Your DS sounds so sweet and EMPATHETIC! WOW! That's such a breakthrough! Poor empathy skills and "connectiveness" is the hardest part of ASD for me.

 

[steph124ny]

Well, my son played in his very first lacrosse game with the school team today. He has played on leagues before but never made the team until this year. He only got to play a couple of minutes at the end when the coach threw the 2nd stringers on because we were down by 2 and would lose anyway, but at least he got to play! Unfortunately, it also rained about 2 inches during the hour of the game and we got absolutely soaked to to skin! LOL! It was so nice to be doing something that a "normal" parent would do though...

My older DD does gymnastics, but that is a different beast than watching a game. I felt like a typical parent for a few minutes....it was a little strange...but nice.

 

[mommatomase]

What a fantastic story! Your DS sounds so sweet and EMPATHETIC! WOW! That's such a breakthrough! Poor empathy skills and "connectiveness" is the hardest part of ASD for me.

Mase has always been very affectionate with me... I was his Teddy Bear (and still am for the most part). His compassion comes and goes... if I stub my toe he will laugh uncontrolably or if he thinks there is blood he will run the other way...

But... Momma is Momma.

Ironically, we practiced Attachment Parenting from birth and I truly think that Mase would be much less "functional" if we had not done that. Having only one child made that very easy.... if there would have been more than one, I'd be in the looney bin...

 

[kampfirekim]

Well, my son played in his very first lacrosse game with the school team today. He has played on leagues before but never made the team until this year. He only got to play a couple of minutes at the end when the coach threw the 2nd stringers on because we were down by 2 and would lose anyway, but at least he got to play! Unfortunately, it also rained about 2 inches during the hour of the game and we got absolutely soaked to to skin! LOL! It was so nice to be doing something that a "normal" parent would do though...

My older DD does gymnastics, but that is a different beast than watching a game. I felt like a typical parent for a few minutes....it was a little strange...but nice.

Yes! At least he got to play. At my DS6s' T-Ball game yesterday, I almost cried unexpectedly (it's rare for me to cry) when I looked at my autistic son. I couldn't help but think, and voice to my husband, that HE should be out there too. It nearly broke my heart. I don't usually allow myself to have those thoughts, but it just blindsighted me. I'm looking forward to the day he can play second or even third string. Heck, I'd be glad if he just calmly sat on the bench and enjoyed being with other boys. I really enjoyed your post. Thanks for sharing it. It's very encouraging to hear the progress of other spectrum kids. It helps keep the hope and faith alive!

. Having only one child made that very easy.... if there would have been more than one, I'd be in the looney bin...

Now you know what's wrong with the rest of us! Sometimes I feel loonier than a cheshire cat!

 

[iwrbnd]

Add me to that looney-bin, too!

 

[kampfirekim]

Add me to that looney-bin, too!

I think we ALL visit the bin every now and then don't you?

Just wanted to wish everyone in the Great Land of Schmolland the absolute best Mother's Day ever!

P.S. Been peeking at a couple of your profiles to see who you are. Hopefully I'll eventually get to read them all. You girls are terrific!
P.S.S. iwrbnd...glad to finally know what that means! Me too!

 

[iwrbnd]

Happy Mother's Day to the funniest most patient mom's I know!

Kampfirekim, I don't like my username! iwrbnd is so hard but I didn't know what I was doing when I made it! This is my first message board and I was a newbie, is it possible to change it?

 

[persimmondeb]

Happy Mother's Day, Everybody!