Exhausted from parenting/ASD children/Welcome to Schmolland!

[iwrbnd]

Originally Posted by kampfirekim

Hi! I just finished reading this thread and I feel like someone has been peeking through my curtains! This is my life. Thanks, ratlenhum, for sharing the Holland Schmolland piece. I laughed and cried all at once. I have a neurtotypical DS6 and autistic DS5 so I feel like I have one foot in Italy and the other foot in Schmolland. Does that make me a Itali-Schmolland-American? Seriously, from one Schmollandite to another, do you mind if I join you?

I agree with the poster that said people 40+ should see an end in sight...I am 41 and DH is 51. There is no end in sight, but we are blessed.
Yes, momejay, you do have to learn to laugh and find the positive. Both, my neurtotypical and my neurochallenged, give me plenty to laugh about and plenty to be grateful for. Finding the humor has gotten me through a lot of hard knocks in life, not just parenthood.

We should have a Schmolland support group! I knew our country of Schmolland was getting big but when you actually meet the citizens you realize there are neighbors just down the road!

[kaffinito]

Originally Posted by ratlenhum

Holland Schmolland
by Laura Kreuger Crawford

... Having a child with special needs is supposed to be like this -- not
any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was
hitting me over 100 times a day. While I appreciated the intention of
the story, I couldn't help but think, "Are they kidding? We're not in
some peaceful country dotted with windmills. We are in a country
under siege -- dodging bombs, boarding overloaded helicopters,
bribing officials -- all the while thinking, "What happened to our
beautiful life?"

That was five years ago.

hard part of living in our country is dealing with people from
other countries. We try to assimilate ourselves and mimic their
customs, but we aren't always successful. It's perfectly
understandable that an 8 year-old from Schmolland would steal a train
from a toddler at the Thomas the Tank Engine Train Table at Barnes
and Noble. But this is clearly not understandable or acceptable in
other countries, and so we must drag our 8 year-old out of the store
kicking and screaming, all the customers looking on with stark,
pitying stares. But we ignore these looks and focus on the exit sign
because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for
the fleshy part of a woman's upper torso and says, "Do we touch
boodoo?" We simply say, "No, we do not touch boodoo," and go on about
our business. It's a bit more startling in other countries, however,
and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants
and still carry on, this is intolerable to certain citizens in
Schmolland, who insist that the pants must come off no matter where
they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and
comforting to us, yet are still separate entities. Together we make
up a federation of countries, kind of like Scandinavia. Like a person
from Denmark talking to a person from Norway (or in our case, someone
from Schmenmark talking to someone from Schmorway.), we share enough
similarities in our language and customs to understand each other,
but conversations inevitably highlight the diversity of our
traditions. "My child eats paper. Yesterday he ate a whole video
box." "My daughter only eats four foods, all of them white." "We
finally had to lock up the VCR because my child was obsessed with the
rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten
years ago, 1 in 10,000 children had autism. Today the rate is
approximately 1 in 250. Something is dreadfully wrong. Though the
causes of the increase are still being hotly debated, a number of
parents and professionals believe genetic predisposition has collided
with too many environmental insults -- toxins, chemicals,
antibiotics, vaccines -- to create immunological chaos in the nervous
system of developing children. One medical journalist speculated
these children are the proverbial "canary in the coal mine", here to
alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism
community, it feels true to me.

I hope that researchers discover the magic bullet we all so
desperately crave. And I will never stop investigating new treatments
and therapies that might help my son. But more and more my priorities
are shifting from what "could be" to "what is." I look around this
country my family has created, with all its unique customs, and it
feels like home. For us, any time spent "nation building" is time
well spent.

I might have posted sooner, but am still crying from everyone's stories. then this article did me in.

DS17 (ASD) is a senior in high school but will not graduate this year. His projected date of graduation is 2012.

He will not shower unless forced to.
He will not shave unless I refuse to feed him dinner.
He eats everything in sight.

He wears blue jeans and black shirts. Long sleeve shirts in winter and short sleeve shirts in summer. I still have to take his winter clothes away and hide his coat until the next fall and to make sure they have been replaced with jean shorts and black summer shirts. He has been known to wear his winter coat with the hood up in the middle of summer.

I can - if lucky - get him to do maybe one homework assignment every week. Not surprisingly, he's flunking all of his classes. Again.

His high school wanted me to send him to a school for incorrigible children. The kind of school where most kids are court ordered.

He still touches other people inappropriately, and doesn't understand that some people might not want a hug. He also does not understand that not everyone wants or needs his "help"

Thank God DS9 is more mild on the spectrum than DS17. But he is going to be a teenager soon. And he still wears his shoes on the wrong feet and has "accidents".

And then I have DN5 (CP) who is wearing diapers and always will, and who can't walk up or down a set of stairs by himself. He's wrecked 2 tv's, one dvd player since January, and now our house looks like Fort Knox with locked gates everywhere and a cage over the tv. I was coping quite well until he came to live with us - and now I am drowning.

I hate my job (Mom) and I want to quit. I'm just glad I had no illusions going in that mother hood was going to be a picnic. I don't quit though - I don't have another job lined up. So I go through each day trying very hard not to think about tomorrow, because thinking about tomorrow means that I will realize how many tomorrows there might actually be.

I'm so glad to read that I'm not alone. to all of you and thank you so much for sharing.

[persimmondeb]

The Schmolland piece made me laugh and cry at the same time.

DS14 actually isn't that hard to deal with most of the time, since he's easygoing and fairly competent, if very childlike, but there are moments. Like when I know he's got Lego (staples, rubberbands, little magnets, etc.) in his mouth and I can hear it clicking against his teeth as he denies it. He eats paper (although I'm not sure if he ever ate a whole video box) and I know he's licked walls. He used to eat carpet fuzz as a baby, which made putting him down on the floor exciting.

On Easter we went to the beach, where we watched our ninth grade honor student build himself a sandcastle with the bucket and shovel that he put in the car "just in case". We get some funny looks, but as an activity it beats smoking pot in the garage like the neighbor's kid.

I don't worry too much about his being able to keep house for himself, although I do sometimes worry about his ability to produce income. He does chores, even occasionally without being asked, and stays home alone for an hour or two in the afternoon, although he is not allowed to use the stove without supervision since the incident of the flaming lunchmeat.

I can't imagine what he would be like if he were "normal", which is probably just as well. But hang in there, we all have days when we wish we were anywhere else, doing anything else.

[iwrbnd]

Originally Posted by kaffinito

I might have posted sooner, but am still crying from everyone's stories. then this article did me in.

DS17 (ASD) is a senior in high school but will not graduate this year. His projected date of graduation is 2012.

He will not shower unless forced to.
He will not shave unless I refuse to feed him dinner.
He eats everything in sight.

He wears blue jeans and black shirts. Long sleeve shirts in winter and short sleeve shirts in summer. I still have to take his winter clothes away and hide his coat until the next fall and to make sure they have been replaced with jean shorts and black summer shirts. He has been known to wear his winter coat with the hood up in the middle of summer.

I can - if lucky - get him to do maybe one homework assignment every week. Not surprisingly, he's flunking all of his classes. Again.

His high school wanted me to send him to a school for incorrigible children. The kind of school where most kids are court ordered.

He still touches other people inappropriately, and doesn't understand that some people might not want a hug. He also does not understand that not everyone wants or needs his "help"

Thank God DS9 is more mild on the spectrum than DS17. But he is going to be a teenager soon. And he still wears his shoes on the wrong feet and has "accidents".

And then I have DN5 (CP) who is wearing diapers and always will, and who can't walk up or down a set of stairs by himself. He's wrecked 2 tv's, one dvd player since January, and now our house looks like Fort Knox with locked gates everywhere and a cage over the tv. I was coping quite well until he came to live with us - and now I am drowning.

I hate my job (Mom) and I want to quit. I'm just glad I had no illusions going in that mother hood was going to be a picnic. I don't quit though - I don't have another job lined up. So I go through each day trying very hard not to think about tomorrow, because thinking about tomorrow means that I will realize how many tomorrows there might actually be.

I'm so glad to read that I'm not alone. to all of you and thank you so much for sharing.

You are a brave woman to want to quit but staying in the situation to be the mother your sons and nephew need!

God bless you and remember you aren't alone!!! I've bookmarked this thread for when I have an especially hard day. It makes me feel like I can make it when other moms are doing the same thing!

[kaffinito]

Originally Posted by persimmondeb

The Schmolland piece made me laugh and cry at the same time.

DS14 actually isn't that hard to deal with most of the time, since he's easygoing and fairly competent, if very childlike, but there are moments. Like when I know he's got Lego (staples, rubberbands, little magnets, etc.) in his mouth and I can hear it clicking against his teeth as he denies it. He eats paper (although I'm not sure if he ever ate a whole video box) and I know he's licked walls. He used to eat carpet fuzz as a baby, which made putting him down on the floor exciting.

On Easter we went to the beach, where we watched our ninth grade honor student build himself a sandcastle with the bucket and shovel that he put in the car "just in case". We get some funny looks, but as an activity it beats smoking pot in the garage like the neighbor's kid.

I don't worry too much about his being able to keep house for himself, although I do sometimes worry about his ability to produce income. He does chores, even occasionally without being asked, and stays home alone for an hour or two in the afternoon, although he is not allowed to use the stove without supervision since the incident of the flaming lunchmeat.

I can't imagine what he would be like if he were "normal", which is probably just as well. But hang in there, we all have days when we wish we were anywhere else, doing anything else.

Too funny - I needed that!

[kaffinito]

Originally Posted by iwrbnd

You are a brave woman to want to quit but staying in the situation to be the mother your sons and nephew need!

God bless you and remember you aren't alone!!! I've bookmarked this thread for when I have an especially hard day. It makes me feel like I can make it when other moms are doing the same thing!

I did too. Thank you so much for starting this - it's going to help me through a lot of tough days.

[iwrbnd]

Originally Posted by persimmondeb

The Schmolland piece made me laugh and cry at the same time.

DS14 actually isn't that hard to deal with most of the time, since he's easygoing and fairly competent, if very childlike, but there are moments. Like when I know he's got Lego (staples, rubberbands, little magnets, etc.) in his mouth and I can hear it clicking against his teeth as he denies it. He eats paper (although I'm not sure if he ever ate a whole video box) and I know he's licked walls. He used to eat carpet fuzz as a baby, which made putting him down on the floor exciting.

On Easter we went to the beach, where we watched our ninth grade honor student build himself a sandcastle with the bucket and shovel that he put in the car "just in case". We get some funny looks, but as an activity it beats smoking pot in the garage like the neighbor's kid.

I don't worry too much about his being able to keep house for himself, although I do sometimes worry about his ability to produce income. He does chores, even occasionally without being asked, and stays home alone for an hour or two in the afternoon, although he is not allowed to use the stove without supervision since the incident of the flaming lunchmeat.

I can't imagine what he would be like if he were "normal", which is probably just as well. But hang in there, we all have days when we wish we were anywhere else, doing anything else.

Hugs to you too! I've thought the same thing about some of the social immaturity we deal with. I think "It beats drugs!" We've got to find the positive where we can!

[kampfirekim]

Originally Posted by iwrbnd

We should have a Schmolland support group! I knew our country of Schmolland was getting big but when you actually meet the citizens you realize there are neighbors just down the road!

How true that is. Today at Wal-Mart, I met a mom with an aspie son. When my DS began to bang and kick the shopping cart. She totally got it!. It's nice to be understood without explanation.

Originally Posted by kaffinito

I'm so glad to read that I'm not alone. to all of you and thank you so much for sharing.

No, you're not alone at all. As the newest citizen of Schmolland, welcome sweetheart. Hope you find a little love and support here.

Originally Posted by persimmondeb

The Schmolland piece made me laugh and cry at the same time.

DS14 actually isn't that hard to deal with most of the time, since he's easygoing and fairly competent, if very childlike, but there are moments. Like when I know he's got Lego (staples, rubberbands, little magnets, etc.) in his mouth and I can hear it clicking against his teeth as he denies it. He eats paper (although I'm not sure if he ever ate a whole video box) and I know he's licked walls. He used to eat carpet fuzz as a baby, which made putting him down on the floor exciting.

On Easter we went to the beach, where we watched our ninth grade honor student build himself a sandcastle with the bucket and shovel that he put in the car "just in case". We get some funny looks, but as an activity it beats smoking pot in the garage like the neighbor's kid.

I don't worry too much about his being able to keep house for himself, although I do sometimes worry about his ability to produce income. He does chores, even occasionally without being asked, and stays home alone for an hour or two in the afternoon, although he is not allowed to use the stove without supervision since the incident of the flaming lunchmeat.

I can't imagine what he would be like if he were "normal", which is probably just as well. But hang in there, we all have days when we wish we were anywhere else, doing anything else.

At my parents house on Sunday, DS peed in the yard and then ran naked through said yard with me chasing behind (unable to catch him). Of course everyone was there looking on...aunts, uncles, cousins.... The incident of the flaming lunchmeat sounds intriguing. We have the incident of the brown, funny smelling fingerpaint. (no further comment will ever be made on that subject.)

[persimmondeb]

Prosciutto on a fork, toasted over the burner of a gas stove. Apparently he didn't expect it to actually catch on fire. Singed hair, a mysterious burn mark in the linoleum, and a slightly melted fan blade, which he paid to replace.

It IS funny, but could have been dangerous. We really read him the riot act, and he hasn't done anything like that since. Keeping him in microwave snacks seems to have lessened the temptation to use the stove, too.

[iwrbnd]

You know, I just wanted to tell all the moms with children on the spectrum that they can analyze DNA farther down the strand now. (Brand new) Some children diagnosed with autism have found to have a deletion in "Shank 3" (where language and social skills come from) My sister just had this test done on her son and it was positive. They are calling it Phelan-McDermid Syndrome or PMS. The exciting thing is they are already in the labratory for drug intervention. (They have the rat and everything!) I just thought I would share this info. We are all surprised in our family because my nephew is 12 yrs. old and has seen many doctors and always got the "autism" diagnosis and now we find out he has this.

Has anyone heard of this syndrome? What do you think?

I copied this from a website...

Autism Spectrum Disorder & Phelan McDermid Syndrome Q&A

In the course of raising your child and learning more about his or her disorder, you may have developed an awareness of autism spectrum disorder (ASD) and its connection to Phelan McDermid Syndrome (PMS).

What does that definition mean for our families? There are five recognized forms of “Autism”. All of them produce at least these two adverse effects: (1) social interaction and social communications are impaired, and (2) behavior is either restricted (fewer than normal behaviors) or is highly repetitive (too focused on one behavior or topic of interest). Because these critical features of autism frequently occur in children who have been diagnosed with PMS (and for other scientific reasons), it has become apparent that PMS and ASDs are closely related. Further research is needed to determine whether or not PMS will eventually be classified as another form of ASD.

3) What causes autism spectrum disorder? ASD is a disorder of prenatal or postnatal brain development. Although ASD can result from genetic or non-genetic causes, it is primarily a genetic disorder involving multiple genes. Most causes of ASD have not yet been identified. Many chromosome abnormalities and single gene mutations can result in ASD. PMS is one of the genetic disorders that is strongly associated with ASD.

4) If my child has PMS, does that mean he or she has ASD? It is quite possible. At present, ASD is a clinical diagnosis made by the observation and identification of key neurodevelopmental features listed in the DSM IV (see criteria below). Not all of the children with PMS have been diagnosed with ASD. There has been a reluctance by some clinicians to diagnose ASD when there is already another prior genetic diagnosis (like PMS), but the DSM-IV specifically permits dual diagnosis.

5) Is ASD common in individuals with PMS? Yes, many individuals with PMS have a diagnosis of ASD.

6) What is the science behind the relationship between PMS and ASD? PMS is highly associated (99%) with the loss of SHANK3 (a gene crucial for learning and memory). The exact same gene is affected in certain groups of people with ASD, including some individuals with Asperger’s Disorder and others with PDD-NOS. Further, SHANK3 is highly associated with a large group of neuronal adhesion and structure proteins also implicated in ASD.

7) Does the ASD diagnosis replace my child’s diagnosis of PMS? No. About 10% of individuals with ASD have a known cause (such as a chromosome deletion) for their diagnosis of ASD. The genetic diagnosis of 22q13 deletion, or PMS, describes your child’s genetic condition which may include neurodevelopmental features of ASD. The ASD diagnosis describes the behavioral, social, and communication characteristics of your child and is not excluded by a diagnosis of PMS.

8) What does it mean if my child does not have the characteristics of ASD? There is still a lot of debate when to diagnose ASD. Your child may have characteristics of ASD, but not be diagnosed as being on the autism spectrum. Diagnosis by behaviors is often difficult and inexact; clinicians unfamiliar with PMS may be reluctant to make the ASD diagnosis. There is an amazing range of behavioral differences among individuals with PMS, and some do not show significant signs of ASD. Scientists are still trying to determine how people with such similar genetics can be so different. The phenotype of PMS is very heterogeneous (variable from person to person), but what unites our families is a shared genetic diagnosis.

9) Why does autism matter to our Foundation? ASD has become important to our foundation because of the overlap in many of the associated neurological symptoms it shares with PMS. ASD has been diagnosed in many children with PMS, and understanding PMS is now widely recognized as a potential step toward understanding more about ASD. Most of our families are struggling with daily challenges which are commonly seen in ASD, such as limited communication skills, problem behaviors, restricted interests, toilet training difficulty, sleep problems, and other challenges. The Foundation encourages exchange of information among families and strives to keep families informed of medical, genetic, and behavioral advances that could help families address the challenges of ASD.


10) What does the Research Support Committee (RSC) think about the connection between PMS and ASD? There is definitive scientific evidence that loss or mutation of the SHANK3 gene is a genetic cause of ASD. SHANK3 resides on chromosome 22 within the region that is almost always deleted in PMS. In other words, the missing gene that causes the features of PMS is also a recognized cause of ASD. Understanding SHANK3 in the context of its molecular pathway and its relationship to related conditions, including other causes of ASD, could someday lead to treatments for PMS and other forms of ASD. The RSC also wants to see that professionals better understand the standards for diagnosing ASD in individuals with PMS.

[NotUrsula]

In our house it was the Incident of the Exploding Pyrex Bowl. (He was cooking pasta, and the directions on the box said to boil 6 quarts of water. He had never had to use a stock pot before and did not know where I kept it, so instead of calling my office to ask, he tried to use a large pyrex salad bowl that was on the counter, and he put it on the 14000 BTU burner. The result wasn't pretty, but thankfully he wasn't in the room when it blew up, spraying boiling water and glass shards all over the kitchen.)

Lately DH and I are feeling very stressed, and quite frankly, if our marriage survives DS' high school career, it will probably be a miracle. If anything will get us through, it will be that neither of us would voluntarily agree to solo responsibility for DS for more than 24 hours, because puberty has made him utterly exhausting to deal with.

BTW, I had to LOL at the sand castle thing. I honestly never thought twice about how odd it is that he still makes them. However, he does have a preschool-aged little sister who can serve as his cover. (Though it isn't really effective when they constantly bicker about whose castle is better. )

[cm8]

, so who settles the castle dispute? or do you just say they both belong to both of you and look great?

[steph124ny]

Just need to vent a little....DS just came home from his dad's house. Dad denies that anything is wrong with him, and that he is just a product of my bad parenting...so you can tell how well we get along. Dad also owes me close to 45K in back support, and recently stopped paying support again because his unemployment was cut off. He works under the table so I can't garnish him. He lives in a much nicer house than I do too....life is SO not fair. Plus, he only has to deal with DS for a day or two once in awhile...I get the lifelong subscription.

Anyway...Aaron was scrounging through our cupboards looking for a snack. Things are extremely tight right now. We have food...but not much in the way of snacks. And he doesn't eat pasta at all...so not much going on here for him!!! He proceeds to tell me that they had steak and lobster for dinner last night at Dad's and that it sucks to go from a house where there is tons of food to a house where there is none. Tonight we're having hot dogs and my husband is working late to try and make ends meet.

I know he doens't mean anything by it, but Aaron's comment made me so sad I wanted to cry. I hate to be bitter and envious...but there are days when I just want to drive to his Dad's house and beat him with a shovel. (His father...not him! LOL!!!)

[kampfirekim]

Originally Posted by persimmondeb

Prosciutto on a fork, toasted over the burner of a gas stove.

Originally Posted by NotUrsula

In our house it was the Incident of the Exploding Pyrex Bowl.
BTW, I had to LOL at the sand castle thing.

Prosciutto on a fork...exploding pyrex bowls...sand castles...so this is what Schmolland will have to offer when DS reaches puberty. Bet it's not this exciting in Italy! (Although the sandcastles seemed normal to me. I still do that at 41!

Originally Posted by steph124ny

Just need to vent a little.... I hate to be bitter and envious...but there are days when I just want to drive to his Dad's house and beat him with a shovel. (His father...not him! LOL!!!)

We all need to vent every now and then. Sounds like you've got quite a situation. From the looks of it maybe all the inhabitants of Schmolland need to light torches, grab the pitchforks and storm the castle!

[cccdisney]

Originally Posted by kampfirekim

At my parents house on Sunday, DS peed in the yard and then ran naked through said yard with me chasing behind (unable to catch him). Of course everyone was there looking on...aunts, uncles, cousins.... The incident of the flaming lunchmeat sounds intriguing. We have the incident of the brown, funny smelling fingerpaint. (no further comment will ever be made on that subject.)

This sounds like my son! He hates clothes and enjoys smelly "fingerpainting".

I'm SO GLAD I found this thread! All of you have expressed so many feelings I have. I have four children. DD12, DS10, DS6, and DS4. My 6 yr old has moderate to severe autism. I often get so frustrated with my life. I LOVED that Schmolland poem and just might pass it along.
Our house also looks like Fort Knox! Alarms and locks EVERYWHERE. He has absolutely no sense of danger or fear and will take off at any opportunity. And not wander off - SPRINT off! (He runs faster than I do - which really isn't saying much! )

Thankfully I have support. My dh is good with him and I get "breaks" often. My mom is also local and can handle him for a few hours. My sister lives close by and is the only person we can leave him with overnight.

I've also bookmarked this thread. Hugs all around!