new to group

[Guest guest]

Hi . I am replying online so others can add their thoughts too.

" It is very easy for someone to tell you to relax, when they are not going

through it personally! " That's for sure. Many on the list have commented

that if these professionals had one day in our life they would not say such

things. I really don't think anyone can understand unless they live it, so I

stopped talking to others about it, except in more general terms. This group is

great in that respect, everyone gets it, no explanation, it is a relief.

" I don't think it will ever really go away. So, at least she feels some relief

and is not tormented by OCD every two minutes. " We were the same at one point,

it was extremely exhausting and heartwrenching. I'm glad the medication has

given you all some relief from this. In terms of the flare ups, I think it's

the nature of the ocd. It wants to grow itself and unless a person is vigilant

combating it, it will continue to keep trying to take hold. Stress also affects

and increases it, and it seems at adolescence and grow stages (internal stress).

So it's possible maybe your daughter is going through a 'stage' growthwise that

has had an affect. Then, yes of course the medications. They are generally

helpful in reducing the intensity, but for most are not a 'cure'. For some,

like us they have caused more problems.

I know what you mean about feeling it will never change or get better. I guess

I think now that it is a management thing for all of us. Our son is not able to

do ERP, and I don't think the CBT is affecting the OCD, but I hope he is at

least getting support from someone who understands and is working in a

direction. As a teen, 16yr, it is up to him, we are not in the therapy picture,

so there is not much for us to do. Our challenge is that we have been given no

assistance in coping at home and have had to deal with some big stuff, our son

had to leave our home for three month because of behavioral issues. So now I

have found a new psychologist who I hope will help us as a family to work with

this disorder better.

In terms of medication, at the moment he is taking only 5mg of celexa and it

seems to be doing something. He had stopped for a month and things got really

bad again and we were able to persuade him to go back to a low dose. Not sure

if this will last or if he will have to increase, but we like who he is better

on the low dose. Crossing our fingers it will last. Kind of the nature of life

with ocd.

I have to tell you that no matter how bad it's gotten both my husband and I

believe our son will be ok. We feel we just have to get through and survive

this and it will get better. We tend to be optimistic, and maybe stupid(!), but

it's the only way to be with this. The alternative, to be negative thinking,

just won't take you anywhere good. Don't get me wrong, I have my days and even

weeks, and still grieve, but then let go and just let it be, while still

fighting and looking for answers. It is a process to find " your " answers isn't

it?! Don't think it is the same for everyone.

Hang in there!

Barb

Hi Barb!

Hello...

Thank you for your response! I know I was brief, but I have never

been on one of these before and I wasn't sure how much to " share "

initially.

My daughter was diagnosed when she was nine. She recently had a

major flare-up, while on Lexapro, so they switched her to Zoloft.

She has GAD, Dyslexia, Expressive Language Delay and, of course,

severe OCD. She has massive intrusdive thoughts. Mostly focused on

her harming me or me dying. She is worried about failing a test in

school and won't step on the orange tiles at school. She licks

things constantly and clinks her eyes, quite a bit.

My daughter does get CBT, but I often wonder how much it is really

working...She has never been symptom free and althought he meds do

work, it doesn't cut it out. But...at least she doesn't want to kill

herself, so that is a bonus. We no longer have to hold her wrisits,

so she doesn't puncture her veins. It has improved. But am I having

a hard time coming to the place of " acceptance. "

I am sorry there hasn't been much around to help you. I know how

frustrating that must be, but your strength is so evident in your

response!!!

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[Guest guest]

Hi , I suspect the PANDAS type OCD too and still wonder if your

other dd's strep didn't have something to do with your 7 yr old's OCD

getting worse. Just seems odd, the timing. I know other parents

have mentioned that the rapid strep test isn't enough if it's PANDAS

related (pretty sure I read that).... If you search through our

group archive messages for PANDAS, you should turn up a lot, there's

been some detailed messages in the past about bloodwork for strep.

Have you checked the OCD Foundation website for therapists in your

area? I know they have a search option for that, but of course only

therapists who ask to be listed there show up. Hopefully someone in

this group may know of doctors, therapists in Atlanta.

If school is being affected and you now have the " official " diagnosis

of OCD, then you should be able to request a meeting to get her an

IEP or a 504 Plan. Have in mind just *how* OCD is affecting her

badly at school and some ideas of how to accommodate this at school,

plus any supports for schoolwork if she's having a hard time doing

it. Just having it where work can be " late " helps.

Have you had a chance to read much about the treatment/therapy for

OCD yet? You could go ahead and begin a bit at home until you find a

therapist. We never found one in our community when my son's first

began so just slowly managed on our own, with ideas from reading and

this great group!

>

> Hi all,

> I'm just starting on this journey and saw the pediatrician with my

7

> yr old daughter on Friday. Got some referrals to psychologists

> (here's a list -- you pick), and that was pretty much it. I guess

I

> was hoping for more guidance.

> A little background...she was diagnosed with Sensory Integration

> Disorder when she was 4 (it was great to have a diagnosis

finally!).

> Then during a long 6 month battle w/ strep at age 5 she became very

> anxi, but said she was too young for OCD diagnosis. She did make

> some progress and symptoms subsided, and then we relocated from NJ

to

> Atlanta.

>

[Guest guest]

Welcome . So glad you are here. This is a really great group,

where you will find support and helpful information.

We also had references from doctors, but the therapists they referred

us to, did not know how to specifically treat OCD. In fact, my son's

doctor recently asked me for referrals. lol

In looking for a therapist, you need to find someone who uses CBT

(cognitive behavioral therapy) specifically for OCD, including ERP

(exposure and response/ritual prevention). If they do not. . .They do

not know how to treat OCD successfully. We went to numerous

therapists over the years, spending thousands of dollars, and it never

helped. Just this last year, we finally found someone who knows what

they are doing and our son is making progress for the first time.

Places to look are at OCFoundation.org. They have listings in

different states of therapists. But, just because they are listed

there does not mean they know what they are doing. Be prepared to

interview them. Most will do that over the phone. Other places to

consider are anxiety clinics. They often treat OCD too, since it is

an anxiety disorder. When I was searching I also contacted OCD

support groups. They usually can suggest knowledgeable therapists too.

Another thing I would recommend, if you haven't already, is to get

some good books on OCD. There are some really great ones out there.

Four that we have, that really helped me to understand what our son

was dealing with, are:

What to do when your Child has Obsessive-Compulsive Disorder:

Strategies and Solutions by Aureen Pinto Wagner Ph.D.

Freeing Your Child from Obsessive-Compulsive Disorder by Tamar E. Chansky

Talking Back to OCD by March

Helping Your Child With Ocd: A Workbook for Parents of Children With

Obsessive-Compulsive Disorder by Lee, Ph.D. Fitzgibbons and Cherry Pedrick

The last two will actually walk you through doing CBT and ERP therapy

at home, if you feel willing to try it.

Many children who have OCD also suffer from sensory issues. Our son

does and has improved over the years, but I still have to cut tags out

of his clothing.

Again, welcome to the group.

BJ

>

> Hi all,

> I'm just starting on this journey and saw the pediatrician with my 7

> yr old daughter on Friday. Got some referrals to psychologists

> (here's a list -- you pick), and that was pretty much it. I guess I

> was hoping for more guidance.

> A little background...she was diagnosed with Sensory Integration

> Disorder when she was 4 (it was great to have a diagnosis finally!).

> Then during a long 6 month battle w/ strep at age 5 she became very

> anxious and started having germ phobias and anxiety. We had CBT, and

> long course of antibiotic treatment. Psych mentioned possibility of

> PANDAS, but said she was too young for OCD diagnosis. She did make

> some progress and symptoms subsided, and then we relocated from NJ to

> Atlanta.

> Have been in Atlanta for about a year now. About 3 mos. ago her

> younger sister got strep and my other daughter went overboard with

> the questions, reassurance, germ phobia, sensory issues,

> preoccupation with 'bathroom' stuff, hand washing, etc. This occupies

> all her waking hours at home, although fortunately she able to stay

> relatively focused at school -- but I think that is now beginning to

> detiorate too. Mentioned all this to her pediatrician. They did

> rapid strep, got a negative, and said go to psych.

> I'm so frustrated. I have no clue where to start. The school has not

> been very helpful, and lately has actually been more troublesome than

> anything. When I pressed the doctor for someone that she thought

> was 'good', the one person she mentioned is not in our insurance

> plan. We have no family or friends (yet) here in Atlanta as a

> support system, and my daughter's tantrums and behavior is really

> beginning to effect the rest of the family.

> Any suggestions on how/where to start? Anyone on the list interested

> in 'mentoring' a parent new to OCD? Anyone in the Atlanta area that

> might have some suggestions for good therapist? (I might need one as

> well :-)

> Thank you all so much for taking the time to read this...and as I

> must say at least a thousand times as day " It's all OK. "

>

[Guest guest]

,

It sounds like you could be dealing with PANDAS. My daughter was

diagnosed with PANDAS at age five and she was very similiar to how

you describe your daughter. There is a LOT of misinformation and

severe lack of knowledge with PANDAS and healthcare providers. If it

is PANDAS, it is the strep that causes the OCD. Your previous doctor

was incorrect if he/she could not diagnose PANDAS at age five. I

would suggest you do a lot of self education on PANDAS. There is a

range of symptoms, some children experience all and some children

only a few. I would also suggest that you never rely on a quick

strep test as they often provide false negatives in kids with

PANDAS. If you think your daughter has an increase in symptoms and

are suspicious she could have strep and the strep culture comes back

negative, you should still be suspicious of strep. Kids with PANDAS

often respond very favorably to antibiotics, even when the culture is

negative. They may have strep elsewhere that the culture does not

detect. Another important piece of info is that children with PANDAS

very often have asymptomatic strep-- no physical symptoms- no fever,

no red throat, no sore throat. This is the NIMH web site regarding

PANDAS. Good luck. Colleen

http://intramural.nimh.nih.gov/pdn/web.htm

> >

> > Hi all,

> > I'm just starting on this journey and saw the pediatrician with

my 7

> > yr old daughter on Friday. Got some referrals to psychologists

> > (here's a list -- you pick), and that was pretty much it. I

guess I

> > was hoping for more guidance.

> > A little background...she was diagnosed with Sensory Integration

> > Disorder when she was 4 (it was great to have a diagnosis

finally!).

> > Then during a long 6 month battle w/ strep at age 5 she became

very

> > anxious and started having germ phobias and anxiety. We had CBT,

and

> > long course of antibiotic treatment. Psych mentioned possibility

of

> > PANDAS, but said she was too young for OCD diagnosis. She did

make

> > some progress and symptoms subsided, and then we relocated from

NJ to

> > Atlanta.

> > Have been in Atlanta for about a year now. About 3 mos. ago her

> > younger sister got strep and my other daughter went overboard

with

> > the questions, reassurance, germ phobia, sensory issues,

> > preoccupation with 'bathroom' stuff, hand washing, etc. This

occupies

> > all her waking hours at home, although fortunately she able to

stay

> > relatively focused at school -- but I think that is now beginning

to

> > detiorate too. Mentioned all this to her pediatrician. They did

> > rapid strep, got a negative, and said go to psych.

> > I'm so frustrated. I have no clue where to start. The school has

not

> > been very helpful, and lately has actually been more troublesome

than

> > anything. When I pressed the doctor for someone that she thought

> > was 'good', the one person she mentioned is not in our insurance

> > plan. We have no family or friends (yet) here in Atlanta as a

> > support system, and my daughter's tantrums and behavior is really

> > beginning to effect the rest of the family.

> > Any suggestions on how/where to start? Anyone on the list

interested

> > in 'mentoring' a parent new to OCD? Anyone in the Atlanta area

that

> > might have some suggestions for good therapist? (I might need one

as

> > well :-)

> > Thank you all so much for taking the time to read this...and as I

> > must say at least a thousand times as day " It's all OK. "

> >

>

[Guest guest]

what it help me with my son was when i applied for social security benefit and he get the medicaid that is the only this can help because what i know some of theinsurance do not pay like my united health.

To: autism-georgia Sent: Sunday, November 16, 2008 12:34:27 AMSubject: New to group

Hello, my name is shay Dawodu. My son who is 2.5yrs was recently diagnosed with mild Autism. He has speech delay and knows 10 words now. Before he was diagnosed, i was using Babies's can't wait at home and it was not work with him. I just find out my insurance Aetna will not pay for therapy. What kind of insurance can i get for him that will pay for out patient therapy and what school can I send him since he still not old enough to enter pulic school? Please HELP ME. Thanks

[Guest guest]

Depends what state you are in. Ga has programs once being diagnosed with Babies Can't Wait and when he is 3 the early learning center through public school system they go at age 3. I would def. use Babies Can't Wait even if it is not working. Our boy who will turn 3 in jan is in the Babies Can't Wait which I also haven't seen any if not much improvement but it is a lot better then what I could do so I won't complain to much. Our boy doesn't even say 10 words. Babies Can't Wait will pay what your ins doesn't for speech and Occupational Therapy Just some that might help. Every case is Different. Thank you Ogiba Sent from my Verizon Wireless BlackBerryDate: Sun, 16 Nov 2008 05:34:27 -0000To: <autism-georgia >Subject: New to group Hello, my name is shay Dawodu. My son who is 2.5yrs was recently diagnosed with mild Autism. He has speech delay and knows 10 words now. Before he was diagnosed, i was using Babies's can't wait at home and it was not work with him. I just find out my insurance Aetna will not pay for therapy. What kind of insurance can i get for him that will pay for out patient therapy and what school can I send him since he still not old enough to enter pulic school? Please HELP ME. Thanks

[Guest guest]

,

Your statement that BCW will pay what our insurance doesn't for ST &

OT is news to me. My wife and I were told that the only kind of ST

they would offer (for a child who said NO words at the time) was

someone who would come out and accompany my wife on play dates and

help us figure out how to help him communicate. Meanwhile, we are

paying for private ST 2x/wk. Any help you could give me in how I get

them to do what you say they will do would be greatly appreciated.

Thanks,

Mike Randolph

> Depends what state you are in. Ga has programs once being diagnosed with

> Babies Can't Wait and when he is 3 the early learning center through public

> school system they go at age 3. I would def. use Babies Can't Wait even if

> it is not working. Our boy who will turn 3 in jan is in the Babies Can't

> Wait which I also haven't seen any if not much improvement but it is a lot

> better then what I could do so I won't complain to much. Our boy doesn't

> even say 10 words. Babies Can't Wait will pay what your ins doesn't for

> speech and Occupational Therapy

>

> Just some that might help. Every case is Different.

>

>

> Thank you

>

> Ogiba

>

> Sent from my Verizon Wireless BlackBerry

>

> ________________________________

>

> Date: Sun, 16 Nov 2008 05:34:27 -0000

> To: <autism-georgia >

> Subject: New to group

>

> Hello, my name is shay Dawodu. My son who is 2.5yrs was recently

> diagnosed with mild Autism. He has speech delay and knows 10 words now.

> Before he was diagnosed, i was using Babies's can't wait at home and it

> was not work with him. I just find out my insurance Aetna will not pay

> for therapy. What kind of insurance can i get for him that will pay for

> out patient therapy and what school can I send him since he still not

> old enough to enter pulic school? Please HELP ME. Thanks

>

>

[Guest guest]

Helllo shay my name is . The warmest welcome to you.

Subject: New to groupTo: autism-georgia Date: Saturday, November 15, 2008, 11:34 PM

Hello, my name is shay Dawodu. My son who is 2.5yrs was recently diagnosed with mild Autism. He has speech delay and knows 10 words now. Before he was diagnosed, i was using Babies's can't wait at home and it was not work with him. I just find out my insurance Aetna will not pay for therapy. What kind of insurance can i get for him that will pay for out patient therapy and what school can I send him since he still not old enough to enter pulic school? Please HELP ME. Thanks

[Guest guest]

I know once approved our private ins pays for most and then the rest is picked up. He is under 3. Sent from my Verizon Wireless BlackBerryDate: Sun, 16 Nov 2008 13:57:22 -0500To: <autism-georgia >Subject: Re: New to group , Your statement that BCW will pay what our insurance doesn't for ST & OT is news to me. My wife and I were told that the only kind of ST they would offer (for a child who said NO words at the time) was someone who would come out and accompany my wife on play dates and help us figure out how to help him communicate. Meanwhile, we are paying for private ST 2x/wk. Any help you could give me in how I get them to do what you say they will do would be greatly appreciated. Thanks, Mike Randolph On Sun, Nov 16, 2008 at 7:39 AM, <jamieogibavzw (DOT) blackberry.net> wrote: > Depends what state you are in. Ga has programs once being diagnosed with > Babies Can't Wait and when he is 3 the early learning center through public > school system they go at age 3. I would def. use Babies Can't Wait even if > it is not working. Our boy who will turn 3 in jan is in the Babies Can't > Wait which I also haven't seen any if not much improvement but it is a lot > better then what I could do so I won't complain to much. Our boy doesn't > even say 10 words. Babies Can't Wait will pay what your ins doesn't for > speech and Occupational Therapy > > Just some that might help. Every case is Different. > > > Thank you > > Ogiba > > Sent from my Verizon Wireless BlackBerry > > ________________________________ > From: " SHAY " <ibjoke79> > Date: Sun, 16 Nov 2008 05:34:27 -0000 > To: <autism-georgia > > Subject: New to group > > Hello, my name is shay Dawodu. My son who is 2.5yrs was recently > diagnosed with mild Autism. He has speech delay and knows 10 words now. > Before he was diagnosed, i was using Babies's can't wait at home and it > was not work with him. I just find out my insurance Aetna will not pay > for therapy. What kind of insurance can i get for him that will pay for > out patient therapy and what school can I send him since he still not > old enough to enter pulic school? Please HELP ME. Thanks > >

[Guest guest]

Carolyn,

Thank you so very much for your reply. Your story is really an inspiration and it helps more than you know. I will be back online later to write more, but in the meantime just wanted to say thank you.

Have a great weekend!

> >> Hello , I just now had time to sit down and read your whole >> story. And I agree with your last sentence "In my opinion that's about >> the only comfort to your child having a disability..whey you can >> actually provide support to someone else struggling with the same...." I >> agree with that and do believe it is why God chose me to go through this >> with my son, it is so I can offer

encouragement to others going through >> like trials in life. So this is what I dedicate myself to doing.>>>> > ------------------------------------

[Guest guest]

Do you have a local YMCA? They have camps for special needs children and they usually have a funding for lower income families, or families with circumstances (it's not always financial). My son went last year and had a blast and it was a relief for me to have someone watch him and keep him entertained for at least part of the day. We all need some down time!!

I'm sure you have tried everything about the poop issue, so I'm probably not saying anything you haven't heard already, but have you tried adding Benefiber? I'm thinking he'd need to go more often if he got lots of fiber? And what about giving him a stool softener at the same time as the Benefiber? The fiber would make him have to go more often, but also might make his stool a bit hard, so the stool softener will add water to his stool and the fiber will make him have to go regularly. My thinking is that he might not be able to hold it as much and may get out of the habit of holding it b/c he cant? If the Benefiber doesn't work? or doesn't go over well----How about Fiber One bars? They are so good and work so well. He'd probably need one with ea. meal though.

Another question? My son w/ AS was pee trained at about 3.5, but the poop came several months later when he was embarrassed by his peers at Early Intervention Pre-School. Does his peers have anything to say about his issue? Just wondering if that makes a difference for him?

I have to be my son's entertainment dir. as well. I've been saying that to my MIL for years and she just doesn't understand how/ why he doesn't find stuff to do on his own. He does to a certain extent but he's always up my behind and when he's not I worry b/c what destructive thing is he doing. I just took pictures of the destruction we call his room, b/c we moved him to "the boy room" which he now shares with his little brother. I had to wait until his little brother was old enough and big enough to combine them b/c when he plays he tends to put his hands over airways and not realize that that's how we stay alive. Hello? It doesn't matter how often I tell him. "KEEP YOUR HANDS OFF HIS MOUTH/NOSE"!!! My AS dude is very thin and average height but his little brother is tall for his age and has a larger build. He can fend for himself now b/c they aren't that

far off in size.

Good luck and hang in there! Some of us have been through some similar situations!

To: autism-aspergers Sent: Sun, June 26, 2011 1:58:13 AMSubject: New to group

Hello, my name is . My son is almost 8. He has several Dx's. bi-polar, aspergers, OCD, blah blah blah...but beyond the "labels" his issues right now are overwhelming. He's going to be 8 in August. He's still in pull ups b/c he refuses to poop on the toilet. He's got a lot of sensory issues so reasoning w/ him, rewards, all that means nothing to him. Psych services in our area are minimal at best. He with holds the stool until he can't physically do it anymore. It's a nightmare. We live in WI and we are a half hour away from Children's hospital so I am going to get him into a GI Dr. our peditrician had suggested the constipation clinic but i tried explaining that he's not constipated, he just refuses to allow the stool to pass. I'm at my witts end. And lately his behavior is starting to get difficult again. His famous line is " THERE'S

NOTHING TO DO" I swear I will be hearing that go thru my head till the day I die. I have 3 other kids, some health issues myself and I just am not a walking entertainment center. And as we all know we can't entertain them 100% of the time. He can't completely verbalize what he wants, so that doesn't help. I'm rambling, I'm sorry. It's just been one of those weeks. He started summer school, so that helps. But I've tried everything I know what to do and am at a loss. My husband is very gifted w/ kids, especially special needs kids, but my gosh, he has to work. So....anyways.. I just needed to vent. All that has been rolling around in my head! thank you for listening!

~, mom to Isaiah, 7, Asperger's, bipolar, 14, Haley 12, Savannah 10

[Guest guest]

,Not all YMCA's have supports for kids with autism.  My son was kicked out of our local YMCA because " he posed a danger to the other kids by taking one of their staff away from the group to attend to him. "  We have NO other aftercare program in our town.  Since there is also no other summer program available for him in our county, I am forced to quit my job to care for him.  He is high functioning and in regular ed.  He needs minimal supports and they weren't even willing to try to accommodate.

 

Do you have a local YMCA?  They have camps for special needs children and they usually have a funding for lower income families, or families with circumstances (it's not always financial).  My son went last year and had a blast and it was a relief for me to have someone watch him and keep him entertained for at least part of the day.  We all need some down time!!

 

I'm sure you have tried everything about the poop issue, so I'm probably not saying anything you haven't heard already, but have you tried adding Benefiber?  I'm thinking he'd need to go more often if he got lots of fiber?  And what about giving him a stool softener at the same time as the Benefiber?  The fiber would make him have to go more often, but also might make his stool a bit hard, so the stool softener will add water to his stool and the fiber will make him have to go regularly.  My thinking is that he might not be able to hold it as much and may get out of the habit of holding it b/c he cant?  If the Benefiber doesn't work? or doesn't go over well----How about Fiber One bars?  They are so good and work so well.  He'd probably need one with ea. meal though. 

 

Another question?  My son w/ AS was pee trained at about 3.5, but the poop came several months later when he was embarrassed by his peers at Early Intervention Pre-School.  Does his peers have anything to say about his issue?  Just wondering if that makes a difference for him?

 

I have to be my son's entertainment dir. as well.  I've been saying that to my MIL for years and she just doesn't understand how/ why he doesn't find stuff to do on his own.  He does to a certain extent but he's always up my behind and when he's not I worry b/c what destructive thing is he doing.  I just took pictures of the destruction we call his room, b/c we moved him to " the boy room " which he now shares with his little brother.  I had to wait until his little brother was old enough and big enough to combine them b/c when he plays he tends to put his hands over airways and not realize that that's how we stay alive.  Hello?  It doesn't matter how often I tell him.  " KEEP YOUR HANDS OFF HIS MOUTH/NOSE " !!!  My AS dude is very thin and average height but his little brother is tall for his age and has a larger build.  He can fend for himself now b/c they aren't that

far off in size. 

 

Good luck and hang in there!  Some of us have been through some similar situations!     

To: autism-aspergers

Sent: Sun, June 26, 2011 1:58:13 AMSubject: New to group 

Hello, my name is . My son is almost 8. He has several Dx's. bi-polar, aspergers, OCD, blah blah blah...but beyond the " labels " his issues right now are overwhelming. He's going to be 8 in August. He's still in pull ups b/c he refuses to poop on the toilet. He's got a lot of sensory issues so reasoning w/ him, rewards, all that means nothing to him.  Psych services in our area are minimal at best. He with holds the stool until he can't physically do it anymore. It's a nightmare. We live in WI and we are a half hour away from Children's hospital so I am going to get him into a GI Dr. our peditrician had suggested the constipation clinic but i tried explaining that he's not constipated, he just refuses to allow the stool to pass. I'm at my witts end. And lately his behavior is starting to get difficult again. His famous line is " THERE'S

NOTHING TO DO " I swear I will be hearing that go thru my head till the day I die. I have 3 other kids, some health issues myself and I just am not a walking entertainment center. And as we all know we can't entertain them 100% of the time. He can't completely verbalize what he wants, so that doesn't help. I'm rambling, I'm sorry. It's just been one of those weeks. He started summer school, so that helps. But I've tried everything I know what to do and am at a loss. My husband is very gifted w/ kids, especially special needs kids, but my gosh, he has to work. So....anyways.. I just needed to vent. All that has been rolling around in my head! thank you for listening! 

~, mom to Isaiah, 7, Asperger's, bipolar, 14, Haley 12, Savannah 10 

[Guest guest]

That's so not cool, Debra. Our YMCA is so willing to cooperate with special needs. My son does not need a one on one, but just a smaller group size (maybe a one on ten or one on 8). We also have a camp through our county mental health agency here in PA, but b/c of HIPPA laws parents aren't allowed to "watch" for the protection privacy of the other children, so I won't let my son attend those groups. If I as his parent cannot pop in unannounced to check on him and the staff then they have too many safeguards protecting the staff/ facility and not my son per se.

What if you called the corporate YMCA and talked to them? Would that help? Our YMCA is part of a larger area YMCA's. I3 of our YMCA's are linked together so if I wasn't able to address my issues locally than I would probably contact the regional center??

That's a shame that you had that experience b/c from what I know about the Y that is sooooo not their philosophy.

Best wishes!

To: autism-aspergers Sent: Sun, June 26, 2011 7:43:15 AMSubject: Re: New to group

,

Not all YMCA's have supports for kids with autism. My son was kicked out of our local YMCA because "he posed a danger to the other kids by taking one of their staff away from the group to attend to him." We have NO other aftercare program in our town. Since there is also no other summer program available for him in our county, I am forced to quit my job to care for him. He is high functioning and in regular ed. He needs minimal supports and they weren't even willing to try to accommodate.

Do you have a local YMCA? They have camps for special needs children and they usually have a funding for lower income families, or families with circumstances (it's not always financial). My son went last year and had a blast and it was a relief for me to have someone watch him and keep him entertained for at least part of the day. We all need some down time!!

I'm sure you have tried everything about the poop issue, so I'm probably not saying anything you haven't heard already, but have you tried adding Benefiber? I'm thinking he'd need to go more often if he got lots of fiber? And what about giving him a stool softener at the same time as the Benefiber? The fiber would make him have to go more often, but also might make his stool a bit hard, so the stool softener will add water to his stool and the fiber will make him have to go regularly. My thinking is that he might not be able to hold it as much and may get out of the habit of holding it b/c he cant? If the Benefiber doesn't work? or doesn't go over well----How about Fiber One bars? They are so good and work so well. He'd probably need one with ea. meal though.

Another question? My son w/ AS was pee trained at about 3.5, but the poop came several months later when he was embarrassed by his peers at Early Intervention Pre-School. Does his peers have anything to say about his issue? Just wondering if that makes a difference for him?

I have to be my son's entertainment dir. as well. I've been saying that to my MIL for years and she just doesn't understand how/ why he doesn't find stuff to do on his own. He does to a certain extent but he's always up my behind and when he's not I worry b/c what destructive thing is he doing. I just took pictures of the destruction we call his room, b/c we moved him to "the boy room" which he now shares with his little brother. I had to wait until his little brother was old enough and big enough to combine them b/c when he plays he tends to put his hands over airways and not realize that that's how we stay alive. Hello? It doesn't matter how often I tell him. "KEEP YOUR HANDS OFF HIS MOUTH/NOSE"!!! My AS dude is very thin and average height but his little brother is tall for his age and has a larger build. He can fend for himself now b/c they aren't that

far off in size.

Good luck and hang in there! Some of us have been through some similar situations!

To: autism-aspergers Sent: Sun, June 26, 2011 1:58:13 AMSubject: New to group

Hello, my name is . My son is almost 8. He has several Dx's. bi-polar, aspergers, OCD, blah blah blah...but beyond the "labels" his issues right now are overwhelming. He's going to be 8 in August. He's still in pull ups b/c he refuses to poop on the toilet. He's got a lot of sensory issues so reasoning w/ him, rewards, all that means nothing to him. Psych services in our area are minimal at best. He with holds the stool until he can't physically do it anymore. It's a nightmare. We live in WI and we are a half hour away from Children's hospital so I am going to get him into a GI Dr. our peditrician had suggested the constipation clinic but i tried explaining that he's not constipated, he just refuses to allow the stool to pass. I'm at my witts end. And lately his behavior is starting to get difficult again. His famous line is " THERE'S NOTHING TO DO" I swear I will be hearing that go

thru my head till the day I die. I have 3 other kids, some health issues myself and I just am not a walking entertainment center. And as we all know we can't entertain them 100% of the time. He can't completely verbalize what he wants, so that doesn't help. I'm rambling, I'm sorry. It's just been one of those weeks. He started summer school, so that helps. But I've tried everything I know what to do and am at a loss. My husband is very gifted w/ kids, especially special needs kids, but my gosh, he has to work. So....anyways.. I just needed to vent. All that has been rolling around in my head! thank you for listening!

~, mom to Isaiah, 7, Asperger's, bipolar, 14, Haley 12, Savannah 10

[Guest guest]

I did contact the corporate office in Albany and requested that they generate a letter explaining why he was kicked out, and they sent me the letter explaining that it was all his fault.  He pretended to pass out after losing a game (he imitates his 8-year-old drama-queen sister).  They called 911 and had the ambulance come and take him to the hospital.  When I got there, they were wheeling him in from his CAT scan and he kept saying, " I was just pretending. "

I would say that they over reacted a bit.  The care taker said, " well, he did open his eyes and look and me a few times, and then just laid back down unresponsive. " I was thinking, " IDIOT! "

 

That's so not cool, Debra.  Our YMCA is so willing to cooperate with special needs.  My son does not need a one on one, but just a smaller group size (maybe a one on ten or one on 8).  We also have a camp through our county mental health agency here in PA, but b/c of HIPPA laws parents aren't allowed to " watch "  for the protection privacy of the other children, so I won't let my son attend those groups.  If I as his parent cannot pop in unannounced to check on him and the staff then they have too many safeguards protecting the staff/ facility and not my son per se. 

 

What if you called the corporate YMCA and talked to them?  Would that help? Our YMCA is part of a larger area YMCA's.  I3 of our YMCA's are linked together so if I wasn't able to address my issues locally than I would probably contact the regional center?? 

 

That's a shame that you had that experience b/c from what I know about the Y that is sooooo not their philosophy. 

 

Best wishes!   

To: autism-aspergers

Sent: Sun, June 26, 2011 7:43:15 AMSubject: Re: New to group

 

,

Not all YMCA's have supports for kids with autism.  My son was kicked out of our local YMCA because " he posed a danger to the other kids by taking one of their staff away from the group to attend to him. "  We have NO other aftercare program in our town.  Since there is also no other summer program available for him in our county, I am forced to quit my job to care for him.  He is high functioning and in regular ed.  He needs minimal supports and they weren't even willing to try to accommodate.

 

Do you have a local YMCA?  They have camps for special needs children and they usually have a funding for lower income families, or families with circumstances (it's not always financial).  My son went last year and had a blast and it was a relief for me to have someone watch him and keep him entertained for at least part of the day.  We all need some down time!!

 

I'm sure you have tried everything about the poop issue, so I'm probably not saying anything you haven't heard already, but have you tried adding Benefiber?  I'm thinking he'd need to go more often if he got lots of fiber?  And what about giving him a stool softener at the same time as the Benefiber?  The fiber would make him have to go more often, but also might make his stool a bit hard, so the stool softener will add water to his stool and the fiber will make him have to go regularly.  My thinking is that he might not be able to hold it as much and may get out of the habit of holding it b/c he cant?  If the Benefiber doesn't work? or doesn't go over well----How about Fiber One bars?  They are so good and work so well.  He'd probably need one with ea. meal though. 

 

Another question?  My son w/ AS was pee trained at about 3.5, but the poop came several months later when he was embarrassed by his peers at Early Intervention Pre-School.  Does his peers have anything to say about his issue?  Just wondering if that makes a difference for him?

 

I have to be my son's entertainment dir. as well.  I've been saying that to my MIL for years and she just doesn't understand how/ why he doesn't find stuff to do on his own.  He does to a certain extent but he's always up my behind and when he's not I worry b/c what destructive thing is he doing.  I just took pictures of the destruction we call his room, b/c we moved him to " the boy room " which he now shares with his little brother.  I had to wait until his little brother was old enough and big enough to combine them b/c when he plays he tends to put his hands over airways and not realize that that's how we stay alive.  Hello?  It doesn't matter how often I tell him.  " KEEP YOUR HANDS OFF HIS MOUTH/NOSE " !!!  My AS dude is very thin and average height but his little brother is tall for his age and has a larger build.  He can fend for himself now b/c they aren't that

far off in size. 

 

Good luck and hang in there!  Some of us have been through some similar situations!     

To: autism-aspergers

Sent: Sun, June 26, 2011 1:58:13 AMSubject: New to group 

Hello, my name is . My son is almost 8. He has several Dx's. bi-polar, aspergers, OCD, blah blah blah...but beyond the " labels " his issues right now are overwhelming. He's going to be 8 in August. He's still in pull ups b/c he refuses to poop on the toilet. He's got a lot of sensory issues so reasoning w/ him, rewards, all that means nothing to him.  Psych services in our area are minimal at best. He with holds the stool until he can't physically do it anymore. It's a nightmare. We live in WI and we are a half hour away from Children's hospital so I am going to get him into a GI Dr. our peditrician had suggested the constipation clinic but i tried explaining that he's not constipated, he just refuses to allow the stool to pass. I'm at my witts end. And lately his behavior is starting to get difficult again. His famous line is " THERE'S NOTHING TO DO " I swear I will be hearing that go

thru my head till the day I die. I have 3 other kids, some health issues myself and I just am not a walking entertainment center. And as we all know we can't entertain them 100% of the time. He can't completely verbalize what he wants, so that doesn't help. I'm rambling, I'm sorry. It's just been one of those weeks. He started summer school, so that helps. But I've tried everything I know what to do and am at a loss. My husband is very gifted w/ kids, especially special needs kids, but my gosh, he has to work. So....anyways.. I just needed to vent. All that has been rolling around in my head! thank you for listening! 

~, mom to Isaiah, 7, Asperger's, bipolar, 14, Haley 12, Savannah 10 

[Guest guest]

,My son was the same way with poops. Our pediatrician prescribed some powder that I could put in his drink that was undetectable to soften the poops. Once we did that, it happened fairly quickly. Oh, that was an awful time. I remember him just crying because he was so constipated that it hurt. You aren’t alone. He’ll get it.

[Guest guest]

Tera- what was the powder? Thank u

From:

and Tera Macmanus ;

To:

<autism-aspergers >;

Subject:

Re: New to group

Sent:

Sun, Jun 26, 2011 2:27:46 PM

,My son was the same way with poops. Our pediatrician prescribed some powder that I could put in his drink that was undetectable to soften the poops. Once we did that, it happened fairly quickly. Oh, that was an awful time. I remember him just crying because he was so constipated that it hurt. You aren’t alone. He’ll get it.

[Guest guest]

I am glad that you followed up on it with a letter, not that it helped you any. We have soooooo many camp opportunities in our area. It's a pitty that you don't have more. There are two zoo's that have programs, there is an art camp, the Y's, the county MH agency, there is a nature camp at an arboretum, there are some school district camps. Ours is half day and voluntary....maybe next year you can do a co-op in your area where a bunch of mom's get together at a park or someone's really big back yard and camp the special kids plus siblings together a few days a wk??

Good luck!

To: autism-aspergers Sent: Sun, June 26, 2011 8:46:16 AMSubject: Re: New to group

I did contact the corporate office in Albany and requested that they generate a letter explaining why he was kicked out, and they sent me the letter explaining that it was all his fault. He pretended to pass out after losing a game (he imitates his 8-year-old drama-queen sister). They called 911 and had the ambulance come and take him to the hospital. When I got there, they were wheeling him in from his CAT scan and he kept saying, "I was just pretending."

I would say that they over reacted a bit. The care taker said, "well, he did open his eyes and look and me a few times, and then just laid back down unresponsive."

I was thinking, "IDIOT!"

That's so not cool, Debra. Our YMCA is so willing to cooperate with special needs. My son does not need a one on one, but just a smaller group size (maybe a one on ten or one on 8). We also have a camp through our county mental health agency here in PA, but b/c of HIPPA laws parents aren't allowed to "watch" for the protection privacy of the other children, so I won't let my son attend those groups. If I as his parent cannot pop in unannounced to check on him and the staff then they have too many safeguards protecting the staff/ facility and not my son per se.

What if you called the corporate YMCA and talked to them? Would that help? Our YMCA is part of a larger area YMCA's. I3 of our YMCA's are linked together so if I wasn't able to address my issues locally than I would probably contact the regional center??

That's a shame that you had that experience b/c from what I know about the Y that is sooooo not their philosophy.

Best wishes!

To: autism-aspergers Sent: Sun, June 26, 2011 7:43:15 AMSubject: Re: New to group

,

Not all YMCA's have supports for kids with autism. My son was kicked out of our local YMCA because "he posed a danger to the other kids by taking one of their staff away from the group to attend to him." We have NO other aftercare program in our town. Since there is also no other summer program available for him in our county, I am forced to quit my job to care for him. He is high functioning and in regular ed. He needs minimal supports and they weren't even willing to try to accommodate.

Do you have a local YMCA? They have camps for special needs children and they usually have a funding for lower income families, or families with circumstances (it's not always financial). My son went last year and had a blast and it was a relief for me to have someone watch him and keep him entertained for at least part of the day. We all need some down time!!

I'm sure you have tried everything about the poop issue, so I'm probably not saying anything you haven't heard already, but have you tried adding Benefiber? I'm thinking he'd need to go more often if he got lots of fiber? And what about giving him a stool softener at the same time as the Benefiber? The fiber would make him have to go more often, but also might make his stool a bit hard, so the stool softener will add water to his stool and the fiber will make him have to go regularly. My thinking is that he might not be able to hold it as much and may get out of the habit of holding it b/c he cant? If the Benefiber doesn't work? or doesn't go over well----How about Fiber One bars? They are so good and work so well. He'd probably need one with ea. meal though.

Another question? My son w/ AS was pee trained at about 3.5, but the poop came several months later when he was embarrassed by his peers at Early Intervention Pre-School. Does his peers have anything to say about his issue? Just wondering if that makes a difference for him?

I have to be my son's entertainment dir. as well. I've been saying that to my MIL for years and she just doesn't understand how/ why he doesn't find stuff to do on his own. He does to a certain extent but he's always up my behind and when he's not I worry b/c what destructive thing is he doing. I just took pictures of the destruction we call his room, b/c we moved him to "the boy room" which he now shares with his little brother. I had to wait until his little brother was old enough and big enough to combine them b/c when he plays he tends to put his hands over airways and not realize that that's how we stay alive. Hello? It doesn't matter how often I tell him. "KEEP YOUR HANDS OFF HIS MOUTH/NOSE"!!! My AS dude is very thin and average height but his little brother is tall for his age and has a larger build. He can fend for himself now b/c they aren't that

far off in size.

Good luck and hang in there! Some of us have been through some similar situations!

To: autism-aspergers Sent: Sun, June 26, 2011 1:58:13 AMSubject: New to group

Hello, my name is . My son is almost 8. He has several Dx's. bi-polar, aspergers, OCD, blah blah blah...but beyond the "labels" his issues right now are overwhelming. He's going to be 8 in August. He's still in pull ups b/c he refuses to poop on the toilet. He's got a lot of sensory issues so reasoning w/ him, rewards, all that means nothing to him. Psych services in our area are minimal at best. He with holds the stool until he can't physically do it anymore. It's a nightmare. We live in WI and we are a half hour away from Children's hospital so I am going to get him into a GI Dr. our peditrician had suggested the constipation clinic but i tried explaining that he's not constipated, he just refuses to allow the stool to pass. I'm at my witts end. And lately his behavior is starting to get difficult again. His famous line is " THERE'S NOTHING TO DO" I swear I will be hearing that go

thru my head till the day I die. I have 3 other kids, some health issues myself and I just am not a walking entertainment center. And as we all know we can't entertain them 100% of the time. He can't completely verbalize what he wants, so that doesn't help. I'm rambling, I'm sorry. It's just been one of those weeks. He started summer school, so that helps. But I've tried everything I know what to do and am at a loss. My husband is very gifted w/ kids, especially special needs kids, but my gosh, he has to work. So....anyways.. I just needed to vent. All that has been rolling around in my head! thank you for listening!

~, mom to Isaiah, 7, Asperger's, bipolar, 14, Haley 12, Savannah 10

[Guest guest]

I would be thinking the same thing. Children in general are great at the drama factor. There should be check lists for injuries so that this kind of thing doesn't happen. Does the child talk to you? If so---blah blah blah....

To: autism-aspergers Sent: Sun, June 26, 2011 8:46:16 AMSubject: Re: New to group

I did contact the corporate office in Albany and requested that they generate a letter explaining why he was kicked out, and they sent me the letter explaining that it was all his fault. He pretended to pass out after losing a game (he imitates his 8-year-old drama-queen sister). They called 911 and had the ambulance come and take him to the hospital. When I got there, they were wheeling him in from his CAT scan and he kept saying, "I was just pretending."

I would say that they over reacted a bit. The care taker said, "well, he did open his eyes and look and me a few times, and then just laid back down unresponsive."

I was thinking, "IDIOT!"

That's so not cool, Debra. Our YMCA is so willing to cooperate with special needs. My son does not need a one on one, but just a smaller group size (maybe a one on ten or one on 8). We also have a camp through our county mental health agency here in PA, but b/c of HIPPA laws parents aren't allowed to "watch" for the protection privacy of the other children, so I won't let my son attend those groups. If I as his parent cannot pop in unannounced to check on him and the staff then they have too many safeguards protecting the staff/ facility and not my son per se.

What if you called the corporate YMCA and talked to them? Would that help? Our YMCA is part of a larger area YMCA's. I3 of our YMCA's are linked together so if I wasn't able to address my issues locally than I would probably contact the regional center??

That's a shame that you had that experience b/c from what I know about the Y that is sooooo not their philosophy.

Best wishes!

To: autism-aspergers Sent: Sun, June 26, 2011 7:43:15 AMSubject: Re: New to group

,

Not all YMCA's have supports for kids with autism. My son was kicked out of our local YMCA because "he posed a danger to the other kids by taking one of their staff away from the group to attend to him." We have NO other aftercare program in our town. Since there is also no other summer program available for him in our county, I am forced to quit my job to care for him. He is high functioning and in regular ed. He needs minimal supports and they weren't even willing to try to accommodate.

Do you have a local YMCA? They have camps for special needs children and they usually have a funding for lower income families, or families with circumstances (it's not always financial). My son went last year and had a blast and it was a relief for me to have someone watch him and keep him entertained for at least part of the day. We all need some down time!!

I'm sure you have tried everything about the poop issue, so I'm probably not saying anything you haven't heard already, but have you tried adding Benefiber? I'm thinking he'd need to go more often if he got lots of fiber? And what about giving him a stool softener at the same time as the Benefiber? The fiber would make him have to go more often, but also might make his stool a bit hard, so the stool softener will add water to his stool and the fiber will make him have to go regularly. My thinking is that he might not be able to hold it as much and may get out of the habit of holding it b/c he cant? If the Benefiber doesn't work? or doesn't go over well----How about Fiber One bars? They are so good and work so well. He'd probably need one with ea. meal though.

Another question? My son w/ AS was pee trained at about 3.5, but the poop came several months later when he was embarrassed by his peers at Early Intervention Pre-School. Does his peers have anything to say about his issue? Just wondering if that makes a difference for him?

I have to be my son's entertainment dir. as well. I've been saying that to my MIL for years and she just doesn't understand how/ why he doesn't find stuff to do on his own. He does to a certain extent but he's always up my behind and when he's not I worry b/c what destructive thing is he doing. I just took pictures of the destruction we call his room, b/c we moved him to "the boy room" which he now shares with his little brother. I had to wait until his little brother was old enough and big enough to combine them b/c when he plays he tends to put his hands over airways and not realize that that's how we stay alive. Hello? It doesn't matter how often I tell him. "KEEP YOUR HANDS OFF HIS MOUTH/NOSE"!!! My AS dude is very thin and average height but his little brother is tall for his age and has a larger build. He can fend for himself now b/c they aren't that

far off in size.

Good luck and hang in there! Some of us have been through some similar situations!

To: autism-aspergers Sent: Sun, June 26, 2011 1:58:13 AMSubject: New to group

Hello, my name is . My son is almost 8. He has several Dx's. bi-polar, aspergers, OCD, blah blah blah...but beyond the "labels" his issues right now are overwhelming. He's going to be 8 in August. He's still in pull ups b/c he refuses to poop on the toilet. He's got a lot of sensory issues so reasoning w/ him, rewards, all that means nothing to him. Psych services in our area are minimal at best. He with holds the stool until he can't physically do it anymore. It's a nightmare. We live in WI and we are a half hour away from Children's hospital so I am going to get him into a GI Dr. our peditrician had suggested the constipation clinic but i tried explaining that he's not constipated, he just refuses to allow the stool to pass. I'm at my witts end. And lately his behavior is starting to get difficult again. His famous line is " THERE'S NOTHING TO DO" I swear I will be hearing that go

thru my head till the day I die. I have 3 other kids, some health issues myself and I just am not a walking entertainment center. And as we all know we can't entertain them 100% of the time. He can't completely verbalize what he wants, so that doesn't help. I'm rambling, I'm sorry. It's just been one of those weeks. He started summer school, so that helps. But I've tried everything I know what to do and am at a loss. My husband is very gifted w/ kids, especially special needs kids, but my gosh, he has to work. So....anyways.. I just needed to vent. All that has been rolling around in my head! thank you for listening!

~, mom to Isaiah, 7, Asperger's, bipolar, 14, Haley 12, Savannah 10

[Guest guest]

Hi ,

My son is 3.5 and he is also not potty trained. I mean he is currently afraid of the toilet. We tried a potty but he played with it like it was a toy! Not saying I can really relate because your son is 8, however, who knows this could happen to my son too. What I am trying now with him for his stool is Miralax. This was recommended to me by his PCP, because his stools were hard and infrequent. This helps him go more regularly and I will be trying to get him on the toilet again soon.

Hope everything works out for you and your family, its really a trial and error thing when dealing with our special needs children....

From: autism-aspergers [mailto:autism-aspergers ] On Behalf Of HSent: Sunday, June 26, 2011 1:58 AMTo: autism-aspergers Subject: New to group

Hello, my name is . My son is almost 8. He has several Dx's. bi-polar, aspergers, OCD, blah blah blah...but beyond the "labels" his issues right now are overwhelming. He's going to be 8 in August. He's still in pull ups b/c he refuses to poop on the toilet. He's got a lot of sensory issues so reasoning w/ him, rewards, all that means nothing to him. Psych services in our area are minimal at best. He with holds the stool until he can't physically do it anymore. It's a nightmare. We live in WI and we are a half hour away from Children's hospital so I am going to get him into a GI Dr. our peditrician had suggested the constipation clinic but i tried explaining that he's not constipated, he just refuses to allow the stool to pass. I'm at my witts end. And lately his behavior is starting to get difficult again. His famous line is " THERE'S NOTHING TO DO" I swear I will be hearing that go thru my head till the day I die. I have 3 other kids, some health issues myself and I just am not a walking entertainment center. And as we all know we can't entertain them 100% of the time. He can't completely verbalize what he wants, so that doesn't help. I'm rambling, I'm sorry. It's just been one of those weeks. He started summer school, so that helps. But I've tried everything I know what to do and am at a loss. My husband is very gifted w/ kids, especially special needs kids, but my gosh, he has to work. So....anyways.. I just needed to vent. All that has been rolling around in my head! thank you for listening!

~, mom to Isaiah, 7, Asperger's, bipolar, Jerem iah 14, Haley 12, Savannah 10

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[Guest guest]

Hello , I am glad to meet you. I am a mom to an adult son who's

been on the autism spectrum all of his life with retardation, seizures

and many other issues. We got through it all while my son was growing up

and now he is pretty mellow and sits in a chair all day.

A little more challenging right now is my 7 year old grandson who've we

have recently learned is on the spectrum also, leaning more towards

aspergers. He had testing at school and they put him there and have set

up an IEP for 2nd grade when he starts. He's got a lot of issues, hasn't

had too much trouble with bowel movements but did lately when he had a

belly ache last month with diareha that scared him so bad he was never

going to sit on a toilet again! He said his butt exploded! Mostly he's

been afraid of peeing in the toilet, and been afraid of the bathrooms at

school but has been doing quite a bit better in that area, and sometimes

can actually go in and go alone now, albeit with two lights on, etc.

Used to wouldn't even go in there alone.

Well kids are here so will talk more later,

Carolyn in Oregon USA

H wrote:

>

> *Hello, my name is . My son is almost 8. He has several Dx's.

> bi-polar, aspergers, OCD, blah blah blah...but beyond the " labels " his

> issues right now are overwhelming. He's going to be 8 in August. He's

> still in pull ups b/c he refuses to poop on the toilet. He's got a lot

> of sensory issues so reasoning w/ him, rewards, all that means nothing

> to him. Psych services in our area are minimal at best. He with holds

> the stool until he can't physically do it anymore. It's a nightmare.

> We live in WI and we are a half hour away from Children's hospital so

> I am going to get him into a GI Dr. our peditrician had suggested the

> constipation clinic but i tried explaining that he's not constipated,

> he just refuses to allow the stool to pass. I'm at my witts end. And

> lately his behavior is starting to get difficult again. His famous

> line is " THERE'S NOTHING TO DO " I swear I will be hearing that go

> thru my head till the day I die. I have 3 other kids, some health

> issues myself and I just am not a walking entertainment center. And as

> we all know we can't entertain them 100% of the time. He can't

> completely verbalize what he wants, so that doesn't help. I'm

> rambling, I'm sorry. It's just been one of those weeks. He started

> summer school, so that helps. But I've tried everything I know what to

> do and am at a loss. My husband is very gifted w/ kids, especially

> special needs kids, but my gosh, he has to work. So....anyways.. I

> just needed to vent. All that has been rolling around in my head!

> thank you for listening! *

>

> *

> *

> *~, mom to Isaiah, 7, Asperger's, bipolar, 14, Haley

> 12, Savannah 10 *

>

[Guest guest]

Me again, was going to write a bit more, got the bubble wrap off the

pool and the boys are in it, is 10 and his brother with the

aspergers will be 7 next month. I am so happy they really do LOVE that

pool, when my 4 kids were young a bought a above ground pool for them

and they hardly ever went in it. These ones are in it for hours, I've

had it 3 years and sure have gotten my money's worth there, because like

you say the main thing is to keep these guys ENTERTAINED all summer.

The bigger grandson of mine plays Xbox 360 and loves games too old for

him but insists he is only killing the " bad guys, " and the younger one

likes all sorts of movies, some no doubt not age appropriate but his

parents think are fine. He has had a real fascination with " War of the

Worlds " now for awhile but has kind of evolved into the bad guy on

Spiderman, what's his name, he's black and creeps around. Also the guy

who turns to sand, he always has a blanket over his head and is turning

to sand himself. It is ok since I know what he's doing but the teacher

at school last year was quite perplexed when he mimicked those giant

tri-pod creatures that were sucking up humans and spitting them out in

body parts with that ugly look on his face, in his psychological report

from the school it said " he makes faces " in class. They had no idea he

was in his own play world because evidentially 1st grade school work was

not that interesting to him.

He is a bit of trouble when he gets over tired like yesterday he had not

slept all night because he said it was too hot. We went to church anyway

like we always do and to eat and to the playground where he went

directly to the sand box. When his brother called him to go he said, " I

am going to kill you with a knife. " He said that at school last year and

got sent to the principals office and I had not heard it in awhile

because his mom cracked down on him NOT to say it anymore.

When I got the brood home she wanted to go to Wal Mart so I said I would

take Lucas home with me, not fun taking him to Wal Mart when he is like

that, and we had fun, he helped me plant flower seeds, we watered them

and then he swam in the pool. I thought he might take a nap but no way.

By the time his mom came he was into another melt down and quite

cantankerous but guess they did ok last night. Now they are back, it is

going to be a long summer, but fun I hope also. They have a sister 14

and we four usually do a lot together. I am looking forward to going

bike riding, he will have to ride with the training wheels because I

have a bursitis in my knee from pulling him in the trailer and can no

longer do it..he is almost 70 lb.!

We'll start out easy, he insists he can ride and I told him I know it

was the steering I was worried about, and he said he could steer too.

We shall see.

Carolyn ;o)

Carolyn wrote:

> Hello , I am glad to meet you. I am a mom to an adult son who's

> been on the autism spectrum all of his life with retardation, seizures

> and many other issues. We got through it all while my son was growing up

> and now he is pretty mellow and sits in a chair all day.

>

> A little more challenging right now is my 7 year old grandson who've we

> have recently learned is on the spectrum also, leaning more towards

> aspergers. He had testing at school and they put him there and have set

> up an IEP for 2nd grade when he starts. He's got a lot of issues, hasn't

> had too much trouble with bowel movements but did lately when he had a

> belly ache last month with diareha that scared him so bad he was never

> going to sit on a toilet again! He said his butt exploded! Mostly he's

> been afraid of peeing in the toilet, and been afraid of the bathrooms at

> school but has been doing quite a bit better in that area, and sometimes

> can actually go in and go alone now, albeit with two lights on, etc.

> Used to wouldn't even go in there alone.

>

> Well kids are here so will talk more later,

> Carolyn in Oregon USA

>

>

>

> H wrote:

>

>> *Hello, my name is . My son is almost 8. He has several Dx's.

>> bi-polar, aspergers, OCD, blah blah blah...but beyond the " labels " his

>> issues right now are overwhelming. He's going to be 8 in August. He's

>> still in pull ups b/c he refuses to poop on the toilet. He's got a lot

>> of sensory issues so reasoning w/ him, rewards, all that means nothing

>> to him. Psych services in our area are minimal at best. He with holds

>> the stool until he can't physically do it anymore. It's a nightmare.

>> We live in WI and we are a half hour away from Children's hospital so

>> I am going to get him into a GI Dr. our peditrician had suggested the

>> constipation clinic but i tried explaining that he's not constipated,

>> he just refuses to allow the stool to pass. I'm at my witts end. And

>> lately his behavior is starting to get difficult again. His famous

>> line is " THERE'S NOTHING TO DO " I swear I will be hearing that go

>> thru my head till the day I die. I have 3 other kids, some health

>> issues myself and I just am not a walking entertainment center. And as

>> we all know we can't entertain them 100% of the time. He can't

>> completely verbalize what he wants, so that doesn't help. I'm

>> rambling, I'm sorry. It's just been one of those weeks. He started

>> summer school, so that helps. But I've tried everything I know what to

>> do and am at a loss. My husband is very gifted w/ kids, especially

>> special needs kids, but my gosh, he has to work. So....anyways.. I

>> just needed to vent. All that has been rolling around in my head!

>> thank you for listening! *

>>

>> *

>> *

>> *~, mom to Isaiah, 7, Asperger's, bipolar, 14, Haley

>> 12, Savannah 10 *

>>

>>

>

>

> ------------------------------------

>

>

[Guest guest]

my son was toilet trained just before his 4th birthday. he copied his younger sister. I praised him a lot whenever he did anything in the toilet and put him on there every 5 minutes until he understood what was expected.

Hi ,

 

My son is 3.5 and he is also not potty trained. I mean he is currently afraid of the toilet. We tried a potty but he played with it like it was a toy! Not saying I can really relate because your son is 8, however, who knows this could happen to my son too. What I am trying now with him for his stool is Miralax. This was recommended to me by his PCP, because his stools were hard and infrequent. This helps him go more regularly and I will be trying to get him on the toilet again soon.

 

Hope everything works out for you and your family, its really a trial and error thing when dealing with our special needs children....

From: autism-aspergers [mailto:autism-aspergers ] On Behalf Of HSent: Sunday, June 26, 2011 1:58 AMTo: autism-aspergers Subject: New to group

 

Hello, my name is . My son is almost 8. He has several Dx's. bi-polar, aspergers, OCD, blah blah blah...but beyond the " labels " his issues right now are overwhelming. He's going to be 8 in August. He's still in pull ups b/c he refuses to poop on the toilet. He's got a lot of sensory issues so reasoning w/ him, rewards, all that means nothing to him.  Psych services in our area are minimal at best. He with holds the stool until he can't physically do it anymore. It's a nightmare. We live in WI and we are a half hour away from Children's hospital so I am going to get him into a GI Dr. our peditrician had suggested the constipation clinic but i tried explaining that he's not constipated, he just refuses to allow the stool to pass. I'm at my witts end. And lately his behavior is starting to get difficult again. His famous line is " THERE'S NOTHING TO DO " I swear I will be hearing that go thru my head till the day I die. I have 3 other kids, some health issues myself and I just am not a walking entertainment center. And as we all know we can't entertain them 100% of the time. He can't completely verbalize what he wants, so that doesn't help. I'm rambling, I'm sorry. It's just been one of those weeks. He started summer school, so that helps. But I've tried everything I know what to do and am at a loss. My husband is very gifted w/ kids, especially special needs kids, but my gosh, he has to work. So....anyways.. I just needed to vent. All that has been rolling around in my head! thank you for listening! 

~, mom to Isaiah, 7, Asperger's, bipolar, Jerem iah 14, Haley 12, Savannah 10 

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[Guest guest]

A couple of years back my ds, now 7 1/2, started on rynatan for his severe allergies. Little did we know a side effect of rynatan is water loss from the body, especially the stool. We now give him a laxative with it. But at that point in time, we were blindsided by his suddenly painful stool movements. He refused to go to number 2! And boy does he have a WILL! When he sensed the need to go, he would run around the house, refusing to sit or be consoled at all. He'd scream and hit his backside. I would find poop stains in his underpants because he was wearing them to bed at the time and it was involuntarily coming out when he was asleep! We snuck laxatives into his food, but the little so-and-so could actually taste them and refuse to eat at all! We tried reasoning with him but his memory was so vivid he was unreasonable to a

point of idiocy. And when the poop did force it's way out, his screams were so gut wrenching that I wanted to cry! We eventually got some liquid laxative down him- as I recall, we had to both pin him down and force his jaws open- talk about feeling like a terrible parent! It took a while of us constantly doing this until he relented. And when this all started, we wanted to see if he was pooping or not. So we asked to see the toilet before he flushed. So he would flush before we could look! There were a couple of times when I had to stand in the bathroom with him as he went! He detests this, as he is very private about his bowel movements. He doesn't mind running around the neighborhood with just shorts on (no underwear)! But for some reason BM are different?! Good luck with him. He has to go soon, or the stool will start solidifying in his bowels. In extreme cases an operation is necessary, because it can kill him if left too long. Oh, and get a doctor

that has a clue!! If a doctor can't understand that a boy simply won't go to the bathroom for mental health reasons, he's frickin' useless if you ask me! Just my two cents, take it for what it is worth.Mark

[Guest guest]

I remember having set time to sit on toilet too. Also I did tryu making my son clean it as he was too old to be going in pants/pull up I tried not letting use pullups too I don't thnk it worked for usm know what a struggle. It is my son was over 5 before we had it masteredSent via BlackBerry by AT&TSender: autism-aspergers Date: Sun, 26 Jun 2011 05:58:13 -0000To: <autism-aspergers >ReplyTo: autism-aspergers Subject: New to groupHello, my name is . My son is almost 8. He has several Dx's. bi-polar, aspergers, OCD, blah blah blah...but beyond the "labels" his issues right now are overwhelming. He's going to be 8 in August. He's still in pull ups b/c he refuses to poop on the toilet. He's got a lot of sensory issues so reasoning w/ him, rewards, all that means nothing to him. Psych services in our area are minimal at best. He with holds the stool until he can't physically do it anymore. It's a nightmare. We live in WI and we are a half hour away from Children's hospital so I am going to get him into a GI Dr. our peditrician had suggested the constipation clinic but i tried explaining that he's not constipated, he just refuses to allow the stool to pass. I'm at my witts end. And lately his behavior is starting to get difficult again. His famous line is " THERE'S NOTHING TO DO" I swear I will be hearing that go thru my head till the day I die. I have 3 other kids, some health issues myself and I just am not a walking entertainment center. And as we all know we can't entertain them 100% of the time. He can't completely verbalize what he wants, so that doesn't help. I'm rambling, I'm sorry. It's just been one of those weeks. He started summer school, so that helps. But I've tried everything I know what to do and am at a loss. My husband is very gifted w/ kids, especially special needs kids, but my gosh, he has to work. So....anyways.. I just needed to vent. All that has been rolling around in my head! thank you for listening! ~, mom to Isaiah, 7, Asperger's, bipolar, 14, Haley 12, Savannah 10

[Guest guest]

We've tried setting a schedule for sitting on the toilet, but he's got such

sensory issues and b/c he holds it, he had a few times that when he did sit on

toilet and go, it hurt really bad. So now that is what he asssociates sitting

on the toilet with. My boy is STUBBORN from the word go! He's starting to clean

up after himself, but b/c of his delays, he's not very good at it, but it sure

is a step in the right direction!

>

> I remember having set time to sit on toilet too. Also I did tryu making my son

clean it as he was too old to be going in pants/pull up I tried not letting use

pullups too I don't thnk it worked for usm know what a struggle. It is my son

was over 5 before we had it mastered

> Sent via BlackBerry by AT & T

>

> New to group

>

> Hello, my name is . My son is almost 8. He has several Dx's.

> bi-polar, aspergers, OCD, blah blah blah...but beyond the " labels " his

> issues right now are overwhelming. He's going to be 8 in August. He's

> still in pull ups b/c he refuses to poop on the toilet. He's got a lot

> of sensory issues so reasoning w/ him, rewards, all that means nothing

> to him. Psych services in our area are minimal at best. He with holds

> the stool until he can't physically do it anymore. It's a nightmare. We

> live in WI and we are a half hour away from Children's hospital so I am

> going to get him into a GI Dr. our peditrician had suggested the

> constipation clinic but i tried explaining that he's not constipated, he

> just refuses to allow the stool to pass. I'm at my witts end. And lately

> his behavior is starting to get difficult again. His famous line is "

> THERE'S NOTHING TO DO " I swear I will be hearing that go thru my head

> till the day I die. I have 3 other kids, some health issues myself and I

> just am not a walking entertainment center. And as we all know we can't

> entertain them 100% of the time. He can't completely verbalize what he

> wants, so that doesn't help. I'm rambling, I'm sorry. It's just been one

> of those weeks. He started summer school, so that helps. But I've tried

> everything I know what to do and am at a loss. My husband is very gifted

> w/ kids, especially special needs kids, but my gosh, he has to work.

> So....anyways.. I just needed to vent. All that has been rolling around

> in my head! thank you for listening!

> ~, mom to Isaiah, 7, Asperger's, bipolar, 14, Haley 12,

> Savannah 10

>