Exhausted from parenting/ASD children/Welcome to Schmolland!

[NJMomma]

Good Morning all

I have some showering tips that have worked well for us -

First, he is on an every other day schedule. I wonder if we will have to change that as he gets older, but for now it works. On shower day, I remind him a couple of times that "today is shower day". We have a shower radio that he can use too. He also really likes the good smelling shower gels - I let him pick the ones he likes from Bath & Body works. I also get him the good smelling shampoos - strawberry Sauve and the like. He doesn't always remember his deodorant in the morning, but I try to remind him. For some reason, he can't seem to remember that step! I leave it out on his bed, open, on top of his clothes. Sometimes he just moves it without putting it on *sigh*, but I am hoping it will get through one day.

Maybe the non shower lovers would like a bath better?

Sorry this weekend wasn't so good for some of fellow Scmhollandites. Today's a new day, right?

IWRBND, I so understand where you are coming from . I bet everyone here does! I had family issues this weekend too, they were a bit different that yours, but I get what you mean about not wanting to go out anymore. My father just doesn't get the autism thing, makes visits hard.

I am all for a holiday for us! Jammies sound good (tagless of course!)

 

[iwrbnd]

It's a new day today and I'm determined to make it a good one! I do feel better, mostly because my house is clean! When I get down about my family I start organizing and cleaning! I guess I feel if I can make my home look perfect on the outside it will really be that way on the inside, too! Like, if my home is super clean and organized then my asd kids really aren't disorganized, forgetful and in desperate need of a shower, right? I think I'm losing my sanity because that make total sense to me!

Anyway, earlier I asked if anyone had gotten a "microarray" analysis on their asd kiddos. My sister had her 12 year old (diagnosed with autism at 3 yrs) tested about a month ago and found out he actually has Phenan-Mcdermid Syndrome or something like that. They say this test will change what we know about ASD and should be the first test ordered when asd is suspected. It does help with insurance because now my nephew is seen as medical vs. behavioral/mental health AND she found out they are almost in drug testing phase for this syndrome!!! She would never had known if she didn't do the test. Here is a long article on it if you're interested.
Consortium Recommends Microarray Testing as New Standard for Pediatric Genetic Diagnosis
ScienceDaily (May 13, 2010) — An international consortium of genetics experts has issued a consensus statement recommending chromosomal microarray (CMA) as the new standard practice for genetic evaluation of children with unexplained developmental delay, autism or birth defects.

The statement and a related research review are published in the May 14, 2010 issue of the American Journal of Human Genetics.

"CMA gives us a huge improvement in the diagnostic yield of genetic testing and in our ability to counsel parents about why their child has developmental disability or multiple congenital anomalies," says David Ledbetter, PhD, Woodruff professor and director of the Division of Medical Genetics at Emory University School of Medicine. Ledbetter heads the International Standard Cytogenomic Array Consortium (ISCA), a group of clinical genetics laboratories and genomics experts focused on standardizing the collection of cytogenetic data.

"Our consortium statement should help set the new standard of care for genetic evaluation of children with unexplained developmental delays and other birth defects, and should be a major step forward in using modern genomic technology in a clinical setting," Ledbetter says.

Clinical genetic testing is a standard diagnostic practice for testing children with unexplained developmental delay/intellectual disability, autism spectrum disorders and multiple congenital anomalies. These disorders account for the largest proportion of genetic testing because of their high prevalence in the population. Developmental delay/intellectual disability is present in about three percent of the population, and autism spectrum disorders affect approximately one in 150 people.

Previous guidelines have recommended testing with G-banded karyotyping, a type of chromosome testing that was first developed in the early 1970s. These tests allow geneticists to visualize and analyze chromosomes for imbalances, including deletions and duplications of genetic regions (copy number variations) that can be inherited or represent new mutations during sperm or egg development. Some copy number variations are common and benign, while others are associated with disease or developmental disorders.

The human genome project allowed geneticists to develop chromosomal microarray (CMA), also referred to as molecular karyotyping. Various forms of CMA have been used by an increasing number of geneticists, pediatric neurologists and developmental pediatricians over the past several years to evaluate children with developmental disorders. However, uniform best practice guidelines have not yet been issued by professional societies for the routine use of CMA as a first tier test.

"A karyotype to scan for chromosome problems is already a well accepted standard of care for these patients," says the article's first author, David Miller, MD, PhD, of the Division of Genetics and Department of Laboratory Medicine at Children's Hospital Boston. "CMA is a more powerful chromosome scan, so we believe it makes even more sense to do a CMA test in the majority of patients."

The ISCA conducted a literature review of 33 studies, including 21,698 patients tested with CMA, and compared CMA to G-banded karyotyping. They found that CMA consistently has a diagnostic yield of 15 to 20 percent, compared to approximately five percent with G-banded karyotyping. The higher yield of CMA is due primarily to its higher sensitivity for submicroscopic copy number variations.

The ISCA organized two workshops, beginning in 2008, to analyze the research data and develop the consensus opinion. Sufficient research data now exists, the consortium reports, to support CMA as the first frontline test in the evaluation of any child with unexplained, non-syndromic developmental delay, intellectual disability or autism. CMA should replace the G-banded karyotype, which has been the standard for 30 to 40 years, the group recommends.

"We hope that our statement, which represents many different institutions and many different clinicians and laboratory experts, will provide other professional organizations the background scientific data to endorse the conclusions of our group or to make their own evaluation of the data and clinical utility," says Ledbetter.

A third ISCA workshop this June in Bethesda, Md., will include clinicians, clinical labs, genomics and bioinformatics experts, as well as representatives from the top vendors developing chromosomal microarray technology and software for analysis.

Using a Grand Opportunities "GO" grant from the American Recovery and Reinvestment Act (ARRA) through the NIH, the ISCA has been developing a central public database of chromosomal microarray data from clinical labs. That database, which will be housed at the National Center for Biotechnology Information (NCBI) at NIH, is expected to include approximately 200,000 patient samples over the next two years that will be used to develop standard guidelines for interpretation of CMA tests.

The database also will be used to develop additional summary recommendations and allow the ISCA to work with vendors to make interpretation guidelines and software tools available to all clinical testing labs and to clinicians who want to better understand and interpret the laboratory data from their patients.

The ISCA now has a membership of more than 100 clinical cytogenetics laboratories that will contribute genotype and phenotype data to the central database at NCBI. The consortium will continue to collect and analyze data from the pediatric population and compare it to normal copy number variation data from other large databases and continue to refine maps of pathogenic vs. benign copy number variation in the human genome.
Sorry this is long but I thought you all would be interested! My DH is a physician and he's going to order these tests on our two asd kids and other children that present with developmental delays. It's another piece to the autism puzzle!

 

[mommatomase]

FAMILY GET-TOGETHERS... YUCK!!!
Mase is the youngest on both sides of our family. My side of the family is so disfunctional we don't get together for anything. Dh's side has all the athletes, handsome young men, etc. It used to be difficult but now... we take the DS, the "aportable" DVD player, the MP3 player. It is funny how now the "big" cousins all want to see Mase's stuff... he can talk them under the table with electronics. We try to get there early and leave early...

I like the term "Aspie Lite"... that is Mase most of the time. His issues are mostly SPD stuff.

We took Mase to a Busch Race in Dover, DE this weekend. We had box seats (given to us), ear plugs and some fast cars... Mase was stimmin' up a storm. He is a finger rubber and arm mover. He loved it!!! Oh... did I say we took the DS too.

OK... please keep the peanuts out of your "nut jobs" please... major allergy here...

Today is a stimmy, silly, non-selfcontrolling day... we are going to the trampoline for 20 minutes...

Hugs to everyone... OH... congrats to the young ladies who raised all that $$$ for special olympics

 

[iwrbnd]

(mommatomase) I like the term "Aspie Lite"...

Good one! I like it, too!

 

[kampfirekim]

Wow, I was out of town this weekend and missed a lot! I'm too far behind and tired to comment on everything but I wanted to say I love reading everyone's stories, comments and insights!

I've had a bad weekend here in my corner of Schmolland. We went to visit my DH's extended family for yet another wonderful accomplishment from one of our nephews. Everyone in his family is just about as wonderful and perfect as they come. Our nephews are nice, smart, talented, athletic and if that's not enough, very handsome! We are so proud of them but it's always hard to be around what "could be" if asd hadn't invaded our family and kicked us out of normal land! It makes it hard for me to visit his brother and sister's families.

My extended family, on the other hand, is a smorgasbord of asd behavior. A psychiatrist could have a heyday at our family get togethers! Seven out of 10 nieces/nephews are on the spectrum! So, I guess we know which branch our kids hit when they fell out of the family tree! MINE!!!

I know mine are mild and I'm still grateful. They act normal and nobody even knows all of our struggles when we visit. (They know what we've told them but our kids blend in) What's hard for me is watching how caring their kids are naturally and how focused/hard-working they are. ASD and executive function dysfunction makes me see my two asd boys as "lazy and selfish". I know they're not but it's how they can come across. So the bad weekend came from me deciding I can discipline away their issues. It never works and just makes everybody miserable! I especially feel sorry for my two NT kids because they try so hard to make everything better but they can't fix their siblings either!

The older they get the more scared I am. Their future is closer and I'm afraid they won't be ready.

Plus, my DH was frustrated, too, and we were both down. We got in our first argument in 19 years of marriage! It wasn't a bad argument, we aren't mad at each other, we are just tired...

I'll say it again "I'm tired of parenting/asd children"...well, at least tonight I am!

This post made me laugh, cry and say "Oh my!" I'm sorry your weekend was so tough. I guess we are unfortunate but fortunate that we have a few special needs in our family (both sides), so both sides of our family are fully understanding and supportive. I know what you meant when you said you were sad over what might have been. Coupla weeks ago I had a similar moment at my DS6's T-ball game. While I don't usually allow myself those kinds of thoughts, I got really sad, teared up and said to my DH..."He should be out there too! It's just not fair!" Of course he felt the same way too.

I love the falling out of the family tree quote. That's sooo funny! Sometimes I think we just fell out of a tree and landed on our heads!

We too have tried to convince ourselves that you can discipline the ASD out, but it just doesn't work that way does it? I still believe in discipline for unacceptable behavior, but the ASD is here to stay. I feel bad for my NT DS6too. I feel like he gets shortchanged so many times, no matter how hard we try not to let that happen. We are very open with him about autism and the problems it presents for his brother and our family. He has so much understanding and compassion for such a young age!

19 YEARS AND YOU JUST HAD YOUR FIRST ARGUMENT? WOW! I thought we were something because it took us 1-2 yrs before we ever argued. You two must be the most laid back people on the planet...or rather in the parallel universe called Schmolland!

I like the term "Aspie Lite"... that is Mase most of the time. His issues are mostly SPD stuff.

OK... please keep the peanuts out of your "nut jobs" please... major allergy here...

I like the term Aspie Lite too!

Oh no! Not a peanut allergy! I don't know how I'd get through life w/out peanut butter!

Took DS swimming yesterday after church. My little Schmolland dolphin swam all afternoon. We almost literally had to drag him out! Glad summer is almost here. We won't be under the shade tree quite as often...we'll be at Nana and Poppa's pool where KFK can get a nice relaxing break! That little booger and his bro can swim until their legs fall off! That can only mean even more relaxation at night as they will be tttiiiiiirrrrreeeddd!

 

[kirstenb1]

Iwrbnd, thanks for the intel on the blood-testing. Zoe is only 4, so we've never pursued any type of testing. Is this something you'd ask your pediatrician about, and they'd send you to the lab? Or are there special sites you go to?

 

[iwrbnd]

Iwrbnd, thanks for the intel on the blood-testing. Zoe is only 4, so we've never pursued any type of testing. Is this something you'd ask your pediatrician about, and they'd send you to the lab? Or are there special sites you go to?

You should be able to ask your doctor and he should do it. This is completely new (as of this week) that doctors are being told to do this first. So, he maybe won't have heard of it yet, but believe me, he will soon!

Any medical doctor can order the CMA. The lab will interpret the results. For ex. it will say something like "abnormal deletion size__ on chromosome__ critical gene involved__. This gene is associated with___syndrome. Recommend patient___." I know this because my sister just got the test done and the doctor gave her a copy.

Good luck and let me know what your doctor says.

(My sister's son had always gotten "normal" on all other bloodwork done so this new one was a shock to her. They can take the DNA strand down to a more detailed look and that is what this test does.)

 

[iwrbnd]

kampfirekim, you always make me feel better! Thanks!

 

[mommatomase]

We too have tried to convince ourselves that you can discipline the ASD out, but it just doesn't work that way does it? I still believe in discipline for unacceptable behavior, but the ASD is here to stay. I feel bad for my NT DS6too. I feel like he gets shortchanged so many times, no matter how hard we try not to let that happen. We are very open with him about autism and the problems it presents for his brother and our family. He has so much understanding and compassion for such a young age!

I like the term Aspie Lite too!

Oh no! Not a peanut allergy! I don't know how I'd get through life w/out peanut butter!

You surely can't discipline another way of thinking but the unacceptable behavior is not accepted anywhere... not even in Schmolland!
Dh and I used to eat PB&J sandwiches every Sunday night!! I haven't had PB in 8 years... Food allergies stink and then add all the SPD stuff... although that has really helped us with the picky eater thing... he is on a limited diet due to food allergies and that... the family gets so one less thing we need to explain over and over and over again... well sometimes.

 

[iwrbnd]

I agree about the discipline thing. Ours have never gotten away with disrespect or anything like that. Their behavior completely forms to society. I think where I get upset is I know where their heart is. They do things for others because they are told to but it's not natural to them. I see my nephews really care and be aware of others...THAT'S what I want. For example, I remember once I was throwing up and my asd boy (about 7 at the time) stuck his head next to mine and asked if a friend could come over, completely oblivious to my needs! A few minutes later my non-asd boy (about 4) came to me with a towel and asked if I needed anything else! It's that kind of stuff I want for my asd boys and it's just not natural and it makes me sad. They are "nice and rule-following" but the natural instinct to care for others...well, it's hard! Does anybody understand what I'm trying to say or is this just a problem for us? I guess I thought by the time they were teens and tweens they would have caught on, instead it's gotten worse! Maybe that's to be expected since teens go through an egocentric stage anyway. You just can't discipline compassion into a kid, though, can you?

I know my frustrations are minor and maybe I just need to get over it! Thanks for letting me rant!

 

[iwrbnd]

Ignore this post

 

[mommatomase]

I agree about the discipline thing. Ours have never gotten away with disrespect or anything like that. Their behavior completely forms to society. I think where I get upset is I know where their heart is. They do things for others because they are told to but it's not natural to them. I see my nephews really care and be aware of others...THAT'S what I want. For example, I remember once I was throwing up and my asd boy (about 7 at the time) stuck his head next to mine and asked if a friend could come over, completely oblivious to my needs! A few minutes later my non-asd boy (about 4) came to me with a towel and asked if I needed anything else! It's that kind of stuff I want for my asd boys and it's just not natural and it makes me sad. They are "nice and rule-following" but the natural instinct to care for others...well, it's hard! Does anybody understand what I'm trying to say or is this just a problem for us? I guess I thought by the time they were teens and tweens they would have caught on, instead it's gotten worse! Maybe that's to be expected since teens go through an egocentric stage anyway. You just can't discipline compassion into a kid, though, can you?

I know my frustrations are minor and maybe I just need to get over it! Thanks for letting me rant!

Ever since Mase was little I just naturally told him when to say certain things... I don't know why... but I did. For instance, when I sneeze I say, "Bless you Momma" and I would have him repeat what I said. If he sneezed, I would make sure he was listening. If I hurt myself in anyway I would say, "Are you ok Momma?" and he would repeat. One day about two years ago he told me that he was no longer going to say Bless you or Are you ok. I should just know that I am blessed and I should tell him if I am not ok... He said it was a waste of time and really was silly. I kept up my practices of blessing myself and asking myself if I was alright... I did read somewhere that small talk is ridiculous to an Aspie. Now, for some reason when I sneeze or hurt myself he always asks if I am ok... I don't know what I did to change his thoughts but all of a sudden it is all back again...

For now...

However, he is NOT like this with everyone... or all the time... if I stub my toe he will laugh uncontrollably... go figure!

 

[Kat77]

For example, I remember once I was throwing up and my asd boy (about 7 at the time) stuck his head next to mine and asked if a friend could come over, completely oblivious to my needs! A few minutes later my non-asd boy (about 4) came to me with a towel and asked if I needed anything else! It's that kind of stuff I want for my asd boys and it's just not natural and it makes me sad. They are "nice and rule-following" but the natural instinct to care for others...well, it's hard! Does anybody understand what I'm trying to say or is this just a problem for us? I guess I thought by the time they were teens and tweens they would have caught on, instead it's gotten worse!

You are not alone. I have the same issue. This is actually a serious problem for my DH, who I now know was splashed by the spectrum... but knowledge does not make it any easier, esp. when after calling to tell him you have a double kidney infection and bp of 165, he seriously asks if you are going to make it out of the urgent care clinic in time for a band concert starting in half an hour . Really?!

 

[iwrbnd]

You are not alone. I have the same issue. This is actually a serious problem for my DH, who I now know was splashed by the spectrum... but knowledge does not make it any easier, esp. when after calling to tell him you have a double kidney infection and bp of 165, he seriously asks if you are going to make it out of the urgent care clinic in time for a band concert starting in half an hour . Really?!

Yikes about the kidney infection and yikes about your DH! It makes me feel better, though, that others deal with this. On my bad days I blame myself for not teaching compassion although I know I've tried from the beginning! to you for dealing with it with your DH!

I think this is extra hard for me and DH because we are very compassionate and put others first. I mentioned we had our first fight after 19 years of marriage. (It wasn't even really a fight, we were just both so frustrated that we took it out on each other) I think the reason we get along so well is we think of each other's needs before our own. Our asd boys have had this modeled from day one and yet it hasn't sunk in.

(mommatomase) Ever since Mase was little I just naturally told him when to say certain things...

We did the same thing and it is working although they still need reminders sometimes. I will NEVER forget being at Disney World when my oldest was 6 yrs. old, before we "knew". He wanted a play snake and my mom was going to get it for him so I said "Grandma is buying that for you and you need to say thank you! I reminded him not to forget and then we practiced! Then, as my mom was walking over to him I reminded him again and even said he couldn't have it if he forgot. Guess what? He forgot! When she said he could have it he just stood there holding it! I would have killed him right then and there except there wasn't a defiant bone in his body and I knew deep down it wasn't on purpose. Why are social graces so hard for aspie kids? Of course when I said "What do you say?" he remembered and said thank you. My DH and I say "thank you" all the time, to each other, to the kids, to others and make sure our kids say it and yet even now, 17 years later, I find myself still saying "What do you say?" when he's handed something!

 

[DisneyMama409]

It seems like alot of us on the Dis have children with autism . It's really hard now but all I can do is hope that as they get older it gets easier. As bad as it sounds I feel like Im just waiting for them to grow up so I can relax a bit. I can never relax with my 2 year old pdd son. He is constantly on the go and a "jetter" I never let my guard down with him.EVER. It's like im in a constant state of anxiousness /nervousness. I have faith that things will get better with time. I have faith that my kids will grow up and go to college and have families of thier own someday.

 

[mommatomase]

We did the same thing and it is working although they still need reminders sometimes. I will NEVER forget being at Disney World when my oldest was 6 yrs. old, before we "knew". He wanted a play snake and my mom was going to get it for him so I said "Grandma is buying that for you and you need to say thank you! I reminded him not to forget and then we practiced! Then, as my mom was walking over to him I reminded him again and even said he couldn't have it if he forgot. Guess what? He forgot! When she said he could have it he just stood there holding it! I would have killed him right then and there except there wasn't a defiant bone in his body and I knew deep down it wasn't on purpose. Why are social graces so hard for aspie kids? Of course when I said "What do you say?" he remembered and said thank you. My DH and I say "thank you" all the time, to each other, to the kids, to others and make sure our kids say it and yet even now, 17 years later, I find myself still saying "What do you say?" when he's handed something!

The ONLY thing Mase will say is, "God Bless You" (I sneeze VERY loud) the thank you stuff is ALL reminders... I think I just do all this reminding now out of habit... since he taught me too... Please don't take my post the wrong way... I hear all that you are saying and live it too, but... as I said before, I don't have any other child to compare his quirks to so ignorance is bliss for this...

There is a workbook that Mase and I have been working with, it is called, "Asperger's What Does It Mean To Me?" by Catherine Faherty. It is a little pricey but worth the investment to work through some issues. Mase likes when we have time to "do some pages". I think it is helping him to understand himself and his surroundings better.

Does Bill Gates say Thank You?

 

[iwrbnd]

The ONLY thing Mase will say is, "God Bless You" (I sneeze VERY loud) the thank you stuff is ALL reminders... I think I just do all this reminding now out of habit... since he taught me too... Please don't take my post the wrong way... I hear all that you are saying and live it too, but... as I said before, I don't have any other child to compare his quirks to so ignorance is bliss for this...

There is a workbook that Mase and I have been working with, it is called, "Asperger's What Does It Mean To Me?" by Catherine Faherty. It is a little pricey but worth the investment to work through some issues. Mase likes when we have time to "do some pages". I think it is helping him to understand himself and his surroundings better.

Does Bill Gates say Thank You?

I'll have to check out that book! And I didn't take your post any other way than positive!It makes me not blame myself when I hear others are dealing with this, too! My son is so dang mild that he looks like he should get it and that makes it even harder for me!

Good question about Bill gates! Has he actually admitted to having aspergers?

 

[toodycat]

Hi, everyone. I just wanted to say that I feel your pain and I totally get this thread. My DS, 16, has been diagnosed with ASD since he was 3. Nowadays, after years of therapy, tutoring and other interventions, he is a solid high school student who "blends," though he is still quite shy and only has a handful of friends. But, I remember the days when I was so exhausted from driving from therapy to therapy,working full-time, worrying about everything helping with his homework and filling out insurance appeals that I would stop at a red light and think, "This looks like a good place for a quick nap." I was tired and sick all the time. Stay strong. You are doing some of the hardest work there is. The rewards are sometimes so small and so far apart that it seems tough, but we all know it is so worth it!

 

[iwrbnd]

Hi, everyone. I just wanted to say that I feel your pain and I totally get this thread. My DS, 16, has been diagnosed with ASD since he was 3. Nowadays, after years of therapy, tutoring and other interventions, he is a solid high school student who "blends," though he is still quite shy and only has a handful of friends. But, I remember the days when I was so exhausted from driving from therapy to therapy,working full-time, worrying about everything helping with his homework and filling out insurance appeals that I would stop at a red light and think, "This looks like a good place for a quick nap." I was tired and sick all the time. Stay strong. You are doing some of the hardest work there is. The rewards are sometimes so small and so far apart that it seems tough, but we all know it is so worth it!

Thank you for those words of encouragement! It's nice to see a happy ending! Mine is 17 and lots of things are easier, like you said, but some things are harder in the teen years! Maybe my 2nd asd son will go through the teen years as well as yours is! I'm going to hold onto that thought! Thanks again for sharing your story!

 

[iwrbnd]

It seems like alot of us on the Dis have children with autism . It's really hard now but all I can do is hope that as they get older it gets easier. As bad as it sounds I feel like Im just waiting for them to grow up so I can relax a bit. I can never relax with my 2 year old pdd son. He is constantly on the go and a "jetter" I never let my guard down with him.EVER. It's like im in a constant state of anxiousness /nervousness. I have faith that things will get better with time. I have faith that my kids will grow up and go to college and have families of thier own someday.

Welcome! I have the same hope for the future...college and families of their own. Somedays I see it happening and others days I don't. All we can do is keep on keepin' on! Hang in there!