Parents of Special Needs Children's topics - tribe.net

Education vs Socialisation

2008-07-08T09:05:21Z

Hi everyone, I've not been around for a while because I'm having huge problems with my education authority in getting them to agree where my son should be educated.
I'm getting lots of contradicting information from the so called professionals/specialists. Some are suggesting he should stay in his current mainstream school and needs no extra supports (lol!), others suggest another mainstream school with a specialism in autism. The professional I trust the most has told me I really have to make a decision about whether I want to improve my son's education or socialisation. She is recommending that because of his autism and sensory issues he would be better placed in a specialist autism unit. In this unit he would get more one to one input and access to other professionals such as Occupational Therapy. Hopefully he should improve and learn to read and write (he is now 7). So far he is unable to read and write, although everyone involved keeps telling me how bright he is. But in this unit there are more severely autistic children, which he is not, and I am fearful that he won't have anyone to socially interact with. But this same professional is saying that she will recommend that he is allowed to socialise with other children from the mainstream school and play games with them.
The alternative to is keep him in a mainstream class so that he can socialise, but his autism and sensory difficulties will make it impossible for him to access any kind of learning.
This professional has advised that really I have to put academic stuff first at this stage, because if he cannot read/write he wont have any chance of attaining anything academically and this will affect his possible life choices.
I suppose I'm just looking for re-assurance that I am doing the right thing. I don't know what he will think about this unit and the other children he is with. In some ways he is very capable and I am worrying that it will affect his self esteem. But he has been in a mainstream school for 3 years now and has achieved very little academically and if you observe him in class he appears totally oblivious to anything that is going on around him. Yet when he is at home with me we can have really quite in depth discussions about things and that sometimes makes me doubt how autistic he actually is.
So I've come to the conclusion that 'the environment' plays a big part for him, and therefore a unit might be much quieter and have less stimulation making it easier for him to learn there.

posted in Parents of Special Needs Children - 4 replies

Not Covered?

2008-07-04T01:31:04Z

It has been recommended that my son have speech and sensory therapy twice a week. This amounts to 400.00 per week. What avenues have you guys traveled when insurance refuses to pay? Are there ICD-9 codes that are more often covered?

During the regular school year he is attending school and receives services, but they are still recommending outside help during the summer. I've enrolled him in a developmental preschool but that is only days a week. I just don't have the experience yet to navigate the way and was hoping for some suggestions.

Thanks.

posted in Parents of Special Needs Children - 10 replies

Probiotics and Autism

2008-05-11T21:42:56Z

There is proof that Probiotics works to help correct autism and aspergers. My son is an Aspie and he is improving due to the intake of his multi vites, his probiotics and his cod liver oil!

posted in Parents of Special Needs Children - 16 replies

How do you help/teach others to interact with your kids?

2008-03-30T10:35:21Z

Especially those of you who have kids with behavioral or mental health issues.... how do you help acclimate those adults who are not trained professionals? Some adults (particularly those with lots of "kid" experience and no control issues) deal with them in very positive and appropriate ways, while others get frustrated when the kids in question don't act like "normal" kids. This really aggravates me... obviously the kid is working as best they can within their ability to have socially appropriate behavior - how do you help other adults understand what "normal" is for your kid?

posted in Parents of Special Needs Children - 4 replies

Does the fight ever end ?? NO And Never stop

2008-03-29T06:16:16Z

Spending 45 minutes (( for Governors office that LONG)) talking to someone about how if medicaid keeps taking away service from your daughter they will end up killing her and with you having enough guts to even take it to the news media and anywhere you can because it supposedly called preventive medicine but when they take that preventive medicine that may cost $200 every other month is better than the 10 of thousands that has to be paid for up to 4 days in the Peds ICU.

This was after spending 36 minutes on hold with Medicaid until someone answered me. Then me talking to thier supervisor. Only to be told unless you have something from the governor saying we HAVE to pay for this medicine its still not going to be paid for.

I know the 12 ampules of the breathing med costs alot but it keeps her out of the hospital.

What they are trying to do is make parents of severely handicapped children now put them in ""specialized"" nursing homes.
And we all know what happens in them. And as much as my daughter loves her one on one that would absolutely kill her.

Am fighting it not only for my daughter but other children out there that have been put in these places and more or less forgotten.

For Desirae Moody (age 4 ) That was actually getting better from her disease and the state telling her mother she would be well taken care of and then 2 months later dying from a staph infection.

For Isiah Franklin (age 13) Because medicaid took so many things including all but 36 hours a WEEK of nursing away his single mother had to put him in a nursing home because she couldn't work and take care of her son. Who died of proven neglect.

posted in Parents of Special Needs Children - 4 replies

too cute

2008-01-29T23:16:02Z

Yesterday the lady who programs Becca commucation board was by. In upgrading what Becca can do with it she asked Becca "if your house was on fire what three things are important to you that you would take?"
Becca signed herself, her mom and me.
The lady wanted things so she asked the question again, Becca give her a look that said "What are you crazy, I just told you"
There are time would she is just to cute

posted in Parents of Special Needs Children - 9 replies

Touchy subject with me

2007-12-04T14:39:49Z

But I thought I would type it here as well when someone asked me this that did not know about my daughter.

At this point I still haven't answered them. I was enraged at first then saddened and started thinking of Raven.

What would you do if this scenerio reared its head in your life.

Should DNR's have a clause in it that is different for children and adults?

If said person was in a vegative state in the first place due to an accident or something natural or unatural .

What should actually be done to keep said person healthy to begin with.

in another word should the DNR have special instructions to be seen through when the time arises if anything were to happen to deepen the state of ones mind seizure, coma, flat lining of any sort?

Hoping not to upset anyone I mean no harm. ITs just I don't know how to answer this .

posted in Parents of Special Needs Children - 1 reply

Intro...Hi!

2007-11-16T18:07:48Z

Hi there!

I just joined this group as sometimes we all need to sit/stop/reflect and realize that we are not really alone (there are others out there going thru the same sort of ups and downs)

I am the mother of a 4 yr old non-verbal Autistic boy....he is my special 1 out of 150

I am also Epileptic...so we live a chaotic life of the unexpected...

We are not sure of the root cause of my son's Autism or my Epilepsy...and at this point...I'm much more concerned about focusing on the continuation of progress and not what got us here in the first place :)
(thats probably due to my own baggage...and the realization that you never truly know whats going to happen next)

Its wonderful to meet you all...I hope all is going very very well for you

..Kar

posted in Parents of Special Needs Children - 4 replies

A Light in the night Walk

2007-10-16T02:15:38Z

"Everyone knows someone with cancer. By walking in light the night I am helping all those who have to suffer with this horrible disease. I am more than happy to help in any may that I can"
-Russ Dean, Booz Allen Hamilton- Scholten
As everyone reading this may know already, I lost my son Johnny Bodnar to cancer just five days before his 3rd birthday. Words can never explain the feeling of losing a child. I dont want to see anymore children die from this disease, Thats why my entire family goes to every event and donate anything we can to help those children. Just being there to support helps these children. It really means alot to them to see so many people out there supporting them. Below are links where you can donate, join a team, and get more information about the Light The Night walk.
http://teams.lightthenight.org/SPIDERCRUSADES
The Light The Night Walk is The Leukemia & Lymphoma Society's nationwide walk to raise awareness and funds to cure leukemia, lymphoma and myeloma, and improve the quality of life of patients and their families.
These people are the real heroes, and we need your support to help accelerate cures and give hope to patients and their families. Although research is responsible for increasing survival rates for these diseases, the battle is far from over. Did you know that:
Every five minutes, someone in this country is diagnosed with blood cancer: Every ten minutes, someone loses the fight.
Leukemia causes more deaths than any other cancer among children.
Lymphomas are the most common blood cancers.
The myeloma survival rate is only 32 percent.

http://www.active.com/donate/ltnHollyw/2151_JOHNNYB04

I posted a picture of my neighbors little boy in my blog along with this. I am glad my children got ot know this little boy. He was a true fighter right until the final stages. Please keep his father in mind. Thank you

posted in Parents of Special Needs Children - 0 replies

Heaven's Very Special Child and a couple of other things.

2007-10-08T04:36:00Z

Heaven's Very Special Child
~~Author Unknown~~

A meeting was held quite far from earth
it's time again for another birth,
said the angels to the Lord above,
this special child will need much love.

Her progress may seem slow,
accomplishments she may not show,
and she'll need extra care,
from folks she meets way down there.

She may not run or laugh or play,
her thoughts may seem quite far away,
in many wanys she won't adapt
and she'll be known as handicapped.

So let's be careful where she's sent,
We want her life to be content,
Please Lord,find the parents who
will do a special job for you.

They will not realize right away,
the leading role they're asked to play,
but with this child sent from above,
Comes stronger faith and richer in love.

And soon they'll know the privilege given,
in caring for this gift from Heaven,
this extra special charge, so meek and so mild,
is Heaven's very special child.

When this was sent to me it had he as everything. I changed it to she and added it to a picture of my daughter.
I have it on my wall.

I live almost 200 miles away from my daughter she lives with my father so she could keep all of her nurses and doctors that she has had since she was 2 yrs old. Instead of moving her to a completely different climate thats not always controlled by air conditioners.

We have a butterfly drive going for her on a couple of sites. And its going pretty good.
If it is successful what the soldiers that actually started it for me are wanting to do is Do it for other children as well.

If anyone else is ineterested in doing that place message me. I honestly do not mind sending your info to them.

posted in Parents of Special Needs Children - 1 reply

Hello

2007-10-07T01:01:57Z

My name is Dawn.

I just joined because I saw someones post on the page where it asks you to sign in.

I am a mother of Very special child plus 2 others with hyper activeness and speech impairments.

My oldest has a list of things wrong with her the length of your arm.

I contracted Toxoplasmosis while pregant with her the doctors didn't think she would live past 6 weeks she turned 9 this year.

posted in Parents of Special Needs Children - 1 reply

My girl is walking again.

2007-09-15T00:15:37Z

I wanted to share this moment with you wonderful parents because we need to share our moments of joy as well as our fears. Plus, I know of all people out there, you guys GET it.

For those who don't know, my daughter had surgery on both feet and ankles in April, then spent the entire summer in two big casts, recovering. The casts came off in July and we've spent several weeks getting her up and moving again. Well, on the first day of school last week,, Ree walked to her classroom from the parking lot, using her walker. Her goal was to walk to class on the first day and she did it. She was so proud. When she walked to the door of her class, several of her friends were hanging around and when they saw her coming they all started smiling and saying, "Look, Ree's here." They gathered around, saying hello, making her beam. The last time the kids saw her, she was in her wheel chair with two big pink casts and unable to put any weight on her feet. Now she is standing, albeit wobbly, but standing none the less.

I am so proud of her! It has been a tough summer, and she still has many months of PT and hard work, but she walked to her class today! The doctors were saying she might not get up from the surgery, and look at her! She is wonderful.

My hubby and I grabbed a coffee together after dropping her off to have a mini-celebration. I was so happy, I was tearful. But then he began to talk about how her feet are still turned out and her knee is bent the wrong way and he was getting depressed that after going through so much she might still be stuck in a wheel chair in a few years. I held up my hand to stop him and said, "She walked to class today. That's all that matters right now." He nodded and smiled, then we touched paper cups in a toast and he said, "We are f-ing incredible parents."

And she is an incredible child!

posted in Parents of Special Needs Children - 7 replies

New Yorker "Aspie" Article

2007-08-28T01:07:39Z

I just read an article in the August 20th New Yorker written by an adult with Asperger's and found it well-written, enlightening, and quite humorous, too.

I scanned the pages and turned it into a PDF to share with friends, family, teachers, etc. If anybody is interested, I made it available for download:
www.orangezest.com/Parallel_Play-Tim_Page.pdf

posted in Parents of Special Needs Children - 3 replies

accessible gardening

2007-08-24T19:14:46Z

Hi. Anyone here with a kid in a wheelchair? My husband and I are looking into setting up a wheelchair accessible garden for our eleven year-old daughter who has cerebral palsy. My husband and I just started exploring ideas. Is there a tribe that deals specifically with this topic? I am also interested in gardening, just in general, and this would be a way I could share my interest with our ablebodied younger daughter and our older, handicapped daughter, alike.

posted in Parents of Special Needs Children - 5 replies

OCD

2007-08-11T15:11:11Z

I know this is a weird question but does any ones kid OCD on things?. Right now Becca has a chair she like to set in. It has to face south. If I turn it any other way she turns it back to south. It used to be water bottle labels had to face north now it this.At least she quit kissing the frig:)

posted in Parents of Special Needs Children - 5 replies

Intro

2007-07-14T00:20:48Z

Howdy All
My name Gordy Green. Me my wife and kids have been going to burning man since 01.
My duaghter Becca has Angelman's Syndrome. She 17. And she love BM. Just about every day she asks if we are going.

posted in Parents of Special Needs Children - 6 replies

The Harness

2007-07-09T05:06:27Z

Okay, I need to get some feedback, opinions on whether I'm overreacting or not. My son is in Kindergarten, and his whole Kindergarten class is planning a trip to a local kids amusement part. It is not a major roller-coaster type park, though it does have several carnival-type kid-oriented rides. He has a one-on-one at school who will be with him on this trip.

They are anxious about the trip. They want to harness him. We've never felt compelled to harness him for any reason. We've had him bolt out into the street on a few occasions, into parking lots and across a very crowded mall, and we have always managed to retrieve him safely, but I can see how any of those occasions could have ended very badly. If we were the ones taking him to the park, I sincerely doubt that we would feel the need to harness him, but we're both pretty confident in our ability to keep up with him if he should take off running.

The idea leaves a bad taste in my mouth, like he's more animal than person. Am I overreacting? I need some input.

posted in Parents of Special Needs Children - 11 replies

Celebrate success!

2007-07-09T05:01:51Z

My son Sequoia is reading and writing. It started with sign language and he just became obsessed with words. He talks more, too!

posted in Parents of Special Needs Children - 8 replies

Drug Therapy...

2007-06-08T22:41:23Z

No questions, just wanted to post my experience because I know that it can be hard sometimes to look at drug therapy for our kids.

About two years ago my son's behavior became even more extreme than is typical (his DX is High Functioning Autism), violent outbursts, screaming, throwing things, swearing...I thought I was losing my mind.

We started a drug therapy of Ritalin...after a week and a half there was a noticable different, but not dramatic so we discontinued the ritalin and started a course of zoloft. Miraculous turn around. Turns out that in addition to his HFA he has a severe anxiety disorder and ADHD. He has been on the zoloft for nearly a year now and the result has been incredible...we are also seeing successful improvement with the Straterra (non-stimulant med). My son's behavior has improved dramatically, his impulsiveness is relaxing, he isn't a slave to his anxiety...we've had a very successful and positive experience.

Just wanted to share.

posted in Parents of Special Needs Children - 15 replies

Let's share food ideas

2007-06-08T17:54:04Z

My son is on a diet that is free of gluten and rotates with different nuts, seeds, and rice. He loves raw veggies and his really strong tasting vitamin and mineral supplements from Brainchild Nutritionals. He also eats fish and chicken for grounding. I make a coconut pudding pie that is both vegan and gluten free, if anybody wants to know how.

posted in Parents of Special Needs Children - 21 replies

Photographs at School?

2007-06-07T17:01:30Z

Hi folks. After several years of trying to get reasonable IEPs out of my daughter's school district on our own, her mother and I have realized we need an advocate. So we hired one, informed the district she would be accompanying us to the IEP, and told them they could share information with her. So of course the district is turning to their legal reps. And here's where it's gotten weird already.

The resource specialist apparently came into the classroom yesterday to take pictures of my daughter "for a powerpoint presentation at the IEP." Well for what we are paying this advocate by the hour, we don't want a powerpoint presentation about our daughter as part of the IEP meeting. Let's just get down to business.

Today the resource specialist came back to the classroom to take pictures of our daughter. We had told her 1-1 aide yesterday after hearing about the pictures that we don't want the powerpoint so there wouldn't be any need for pictures. The resource specialist apparently said that the pictures aren't for us, they're for another person at the meeting who doesn't know our child (I can only presume that means the district's lawyer - everyone else on the team knows her well from working with her) and that "it's not our [the parent's] choice whether they present pictures at the IEP."

Now excuse my french here, but what the f*ck!?!? We don't have a choice about whether there's pictures of our daughter and whether we have to pay our advocate to sit through a powerpoint of some kind instead of discussing assessments, goals and services?

So, is it legal for the district to take pictures of our daughter? Does the district get to set agenda items for the meeting without our consent? Obviously I shall bring these issues to the attention of advocate (hopefully tomorrow), but all of this just went down today and I am quite baffled. Any help would be appreciated.

Thank you.

posted in Parents of Special Needs Children - 17 replies

Potty Training?

2007-05-09T00:21:40Z

Any advice on potty training a non-verbal child?
Experiences? Opinions? Do's and Do-Not's?

posted in Parents of Special Needs Children - 17 replies

Rhia's Mom Rocks.. !

2007-04-06T22:27:22Z

Goodness gracious, you're doing all of the right things, it sounds like you are certainly busy pre-op.

Rhia is very fortunate to have your strength and care. Before you know it, this will be behind you and she'll be on the mend.
There is no greater gift to a child facing a dificult surgery than to have their parent(s) as a living example of courage.

Pace yourself and realize that everything may not get done, but the important things will .. and everything else will fall into place, no worries.
Ena and I always kind of use the time around surgery as a mini-vacation, we have good reason to set the world aside and relax and have fun.

We will be thinking of you both.

posted in Parents of Special Needs Children - 2 replies

One month post op

2007-03-29T00:27:25Z

What a ride, we made it through a tough surgery, probably the toughest yet.
Ena told me yesterday that she must have been in heaven for a while becase she can't imagine or remember the actual surgery.
My life is full of gratitude.

Trena, when is your date?

posted in Parents of Special Needs Children - 2 replies

Introduction

2007-03-10T18:50:16Z

Hi! My name is Amanda and I am a younger parent of an 18 month old boy with disabilities. I am looking for other moms who have positive and supportive advice for my husband and I. I grew up with a handicapped brother and sister, but when it is your own child it is much harder. I look forward to talking to other parents!

posted in Parents of Special Needs Children - 6 replies

My AS son is deppresed, oh god...

2007-03-10T18:35:09Z

He is crying and unreachable at times. I am at a loss...I remember being a deppresed kid, it ain't fun. And he is way more volitile then I was...all compounded by the asperger syndrome. He has very little capacity for seeing past it, or remembering that things change...all is black and white. I fear for him. He is 10 and soon will be more independant. We have a psychpharmasuitical apointment soon but I feel very unsure of that route.
Oh what to do, what to think?

posted in Parents of Special Needs Children - 6 replies

Countdown

2007-02-18T14:39:27Z

Hey there tribe community ... we are on countdown for heart surgery and I know that many of you know what this kind of anticipation is like, aurgh!
Ena is scheduled to go in on February 26th for her heart cath and the following day will have her surgery.
It is going to be tough, I know from past experience .. there is something so un-natural about having your child's chest opened, heart stopped and repaired, etc.
My main focus will be, as always, pain management.
I hope this goes smoothly. I have learned from a few years of working in the local hospital that patients who are kind get the best care, so although I will be fighting for her life, I also need stay cool, calm and collected.
Somehow we cope, thanks to pharmaceutical meds (I just started back on the Wellbutrin), good friends and faith.
So here we go ... wish us luck.
Thanks :)

posted in Parents of Special Needs Children - 5 replies

The Transporters is a fun new animation series designed to help children with autism discover the world of emotions.

2007-02-08T17:03:51Z

http://www.transporters.tv/

Do you care for a child with autism between the ages of two and eight? The Transporters is a fun new animation series designed to help children with autism discover the world of emotions. Jane Asher, President of the National Autistic Society, said: "This is such a wonderful initiative. It's going to make a huge difference to some very vulnerable children."

posted in Parents of Special Needs Children - 0 replies

Autism Caregivers your SOS has been heard

2007-01-25T17:31:39Z

Go here to register: http://www.drspectscan.com/webinar/

Parents of autistic children live with tremendous stress. They need biomedical information, as well as personal assistance. When I helped a mother put a shoe on her resistant son and saw him immediately rip it off and throw it across my waiting room, I decided to act. That’s why I, J. Michael Uszler, M.D., assembled a team of Autism experts to discuss new developments and coping tools for Autism and Asperger syndrome. You can attend this information-packed, online event in the comfort of your own home. The specific, insightful steps and new strategies will make an immediate difference in your life, and in the life of your autistic loved one. I promise you, the “Autism Caregivers – your S.O.S. has been heard!” event will live up to its name. Don’t miss this amazing opportunity.

posted in Parents of Special Needs Children - 0 replies

How do you know what choice to make?

2007-01-23T19:50:20Z

My daughter needs surgery on her feet and ankles. We've been putting it off because although her legs are twisted and her feet are flat, it didn't seem to bother her or impair her mobility. Until now. Plus we were waiting for her to grow more so the bones would set properly. But now it is becoming a problem, and she is complaining of pain in her feet and knees. We set the surgery appointment for April and now I'm trying to get everything ready for her recovery. Now I'm scared. There is a good chance she will not recover fully after the surgery because of muscle atrophy from being laid up in casts for two months, because she already has low muscle tone. Am I doing the right thing? If she gets the surgery, will she recover? If we don't get the surgery, is it okay to leave her in pain? She is having problems walking, so chances are she'll be confined to a wheelchair eventually. It seems like a good idea to have the surgery and take the risk. But is it? How do you know what decision to make when all of them seem bad? Am I about to make things worse for my child? What do you do when faced with something like this?

posted in Parents of Special Needs Children - 6 replies

Elective Surgeries

2007-01-22T03:02:28Z

Hi! I am a new member of this tribe. Not a parent, but spent years working in human services: public schools, nursing homes, group homes. Now I work part-time for an agency that provides services to families of children on the autism spectrum.

I've dealt with parents in all these settings, and see too many conflicts between administrators, teachers, service providers and parents, so I'd like to hang out, listen and learn.

Question: have you read about the recent case of the child with severe developmental disabilities whose parents had her uterus and breast tissue removed, then kept her on medication to stunt her growth? So extreme, but I have seen children with severe impairments undergo medical procedures to facilitate their care, like having teeth removed to control biting behavior, or having hysterectomies to stop menstruation, prevent pregnancy, etc. Any more, that is more commonly done with the hormone shots.

Any thoughts on this?

posted in Parents of Special Needs Children - 4 replies

a little insight on Asperger's

2006-12-16T21:00:11Z

I put the link to Wikpedia's page in the bottom of that other thread, but this is a quiz/checklist on AS. My score was in the teens (I'm not an aspie) and my son's score was high thirties (diagnosed aspie). I thought it was kind of interesting to look at - the biggest thing about aspie and other high functioning forms of autism is that the basic thought process is different from "neurologically typical" people.

http://www.wired.com/wired/archive/9.12/aqtest.html

posted in Parents of Special Needs Children - 0 replies

Congenital Heart disease

2006-12-16T19:53:38Z

Hi all,
Just found you tonight. I have been looking on tribe for a place to network with parents. In Asheville, I am a part of the Family Support Network, funded through the United Way.
What are the 'special needs' represented here?
I am somewhat of a veteran in the 'heart' world, so feel free to ask any questions and I will share as I am able.
Glad to have found you all.
Linda

posted in Parents of Special Needs Children - 20 replies

New here...Questions...need help...

2006-12-05T00:58:53Z

Hi my name is Tammy I am a SAHM of three kids a daughter who will be 14 in about 5 weeks, a son who is 8 1/2 and Garrett who will be 10 in about 2 months. Garrett is our special needs child. Garrett has a long list of problems and complications. He has ADHD, BiPolar, OCD, IBS, and developmental dealys...

For a couple of years Garrett was medicated..However now he is NOT..On medications (trust me we have been through many) Garrett lost weight and wasa extremely thin he was weak and had diminshed muscle capasity on his left side..He had numerous "manic episodes" per day including beating his head on walls and floors distroying things peeing everywhere. He was a mess he did not eat and did not sleep there for they continued to adjust, change and add medications and things never seemed to get better..Finally not only for our own mental heath but for Garretts health we took him off all medicines..

AT first we didn't tell the school. Later we did and there was no problems they only asked if the dr was aware of his no longer being medicated..NOW 2 years later it is a problem...

Garrett has never really been a behaovral problem at school as MOST of the teachers have been half way decent about listening to my suggestions on how best to deal with Garrett....Now however we have gotten a teacher who sees having to deal with Garrett a burden and the school is refusing to switch his class (Garrett is in the 3rd grade)

Now the school is trying to pressure us into medicating him....................NOT HAPPENING!!

I need information if anyone knows where I can find it...

about a parents rights NOT to medicate
schools pushing medication
no tolereance policy and special needs kids
etc

Thanks so much
Tammy

posted in Parents of Special Needs Children - 5 replies

Choosing schools - Is gut reaction more important than logic?

2006-11-17T05:32:35Z

Our 7-year old was diagnosed with PDD a month ago and we have been looking at schools in our area under significant pressure to make the choice within a few days.

We have seen three different schools that vary significantly in atmosphere and approach. Here where we live special education classes are intermixed with regular classes in the same school.

The first one (which is probably too far away to be practical) had a small concentrated class that works a lot with the kids in a small group then they join full regular classes for general subjects. The current teacher was very good but she is leaving to take a supervisory post.

The second school has a class of some six kids but the teacher had big problems controlling the group - in short she looked out of her depth. The kids join some regular classes on their own.

The third school has a very impressive teacher who obviously puts her all into her group of 5 PDD kids. What happens is that they attend regular classes in the mornings (with the special education group with them in the class to help). Then in the afternoons they go into their class of 5 kids to learn socialization skills. The aim in this school is to immerse the kids very deeply with the normal classes and this can be a big challenge for some children.

We were very impressed with the first school and had our hearts set on it. The third school is very different in atmosphere, but we sense that it could present a fine balance between the challenge of the real world and a very vibrant teaching atmosphere in the small group.

On balance we feel that the third school is probably the best and that is where are intuition lies. Our child is loud and outgoing but will misbehave when things get tough. He met the teaching staff at the third school and took to them and they to him.

Just wondered if most parents would choose to go with what they think feels right rather than what might seem the safest most logical choice.

posted in Parents of Special Needs Children - 14 replies

grrr.....

2006-11-17T05:27:20Z

Who (else besides me) has dealt with a SPED teacher that seemed clueless and in waaay over his/her head? I'm all for being supportive and helping out as I can, but this guy has very little structure or control in the classroom and seems biased toward certain students. I've requested phone or in person conferences and the guy won't even acknowledge the requests; had to go to school today cuz my daughter was so upset about when she was attacked by another student in the class (not the first time) that she flat refused to return.... while in the office I AGAIN requested a conference - they sent me to his room to speak with him face to face to set up a conference time - the guy wouldn't even make eye contact, knew who I was cuz the office TOLD him they were sending me over, and wouldn't even acknowledge that I was standing there until 2 aides and the asst principal said, "you need to tell her when you can meet so she can go back to work". The asst principal told me she would make sure he stayed after school so I could meet with him then.... wtf???

posted in Parents of Special Needs Children - 4 replies

Am I overreacting about classmates insensitive comments?

2006-11-07T17:49:07Z

In one of my online classes, "Child Development", we have to post answers to discussion board questions a couple of times a week. Our grade depends on this, and in addition we're also graded on our answers to at least two of the other students' posts.

For the last two weeks I've been reading posts about how children who are adopted will suffer because they're not with their biological mother, women should be at home and not at work, and how if they knew they carried a genetic disease like Fragile X, they'd choose not to have "abnormal" or "defective" children, except for the women who'd chose to anyway since they know that "the bond you get with your child after carrying him for 9 months is the most important thing".

Today's question was "What would you promote as a way to improve prenatal health". My answer was "avoid mercury, such as in fish" and some folks talked about getting genetic screening to help avoid certain hereditary traits, like sickle cell. Ok, cool.

One girl posted this:

"I would publicize malnutrition as the leading cause of abnormal babies. I would publicize family planning instead of "oops! I'm pregnant." I would make some huge billboard advertisements showing pictures of healthy babies with adcopy reading "Family Planning" and "Prenatal Nutrition" alongside pictures of defective babies with adcopy reading "OOOOOPS!"

The reason I would do this is because those defective children are going to have to suffer throughout their lives because their parents did not have the decency to do a little family planning. Also, it's not just folic acid, but all the basic nutrients and clean air and water that ensure a healthy baby. And, please! stay away from the drugs and alcohol. Growing babies are delicate and precious. Don't destroy yours before its born."

I am so -gah- I just can't believe this stuff. And it's not just one person, it's several (though at least two of them are mother/daughter, as if that helps). I don't know if I'm more upset about these attitudes about children or the fact that I'm the ONLY person (out of 35 or 40) to say "Hey, monied thoughtful married parents with good prenatal care sometimes have special needs children too!".

I've emailed the teacher, and I'm looking into dropping the class (I need a certain number of untis per semester, but I don't want to be constantly upset either).

I know that I'm being thin skinned about this, but it just seems really insensitive to me. I've talked it over with my husband, and he thinks I should drop too, so I'm not looking for people to tell me to drop, but I'd be happy to listen if anyone thinks I'm over reacting.

posted in Parents of Special Needs Children - 7 replies

How do you spell "screwed"? M-E-D-I-C-A-I-D

2006-10-31T00:34:58Z

Ok... so yesterday we had our annual redetermination for Medicaid for Molly. My Daughter Molly is autistic and receives physical therapy paid for by Medicaid. Well first thing he asks is do you have a current copy of your medical waiver? Uhhh... no... Don't you have a copy? Well the only thing he had was a 3 yr old copy of the Support Services waiver, which we were approved for, but then was told that we did not get. In between that time, we applied for Molly to be on Medicaid, which was approved.

But then the Support Services waiver was taken away because they didn't have enough money for it.

Soooo... we continued on for the last 3 years sending Molly to physical therapy and Medicaid paying for it. joy joy.

Here's the kicker, if we are not on the Support Services waiver, then we should never have been approved for Medicaid. So if we don't qualify for Medicaid financially (which no one appears to know what the cut off is) they are going to take away Medicaid and retroactively make us pay back all the funding that Medicaid paid for Molly's therapy.

Holy shit.

posted in Parents of Special Needs Children - 17 replies

An introduction

2006-10-29T02:53:52Z

Hello. My name is Terena and I'm excited to join your tribe because I've been looking for a good arena to talk to other parents of special needs kids. My girl is 11 with mulitple "disabilities." She's also happy, funny, smart, and turning into a teen-ager.

Just wanted to say hi.

cheers,
Terena

posted in Parents of Special Needs Children - 3 replies

peanut free schools?

2006-09-18T19:10:53Z

a friend of mine is having an awful time trying to get her son's school to go peanut free to acomadate his life threatning allergy. i was hoping someone may have experience or advice on this problem. it seems that most involved are worried more about their own inconvinience than this little boys life....

posted in Parents of Special Needs Children - 7 replies

Just got Ariel's new pyschological evaluation. what a joke

2006-08-28T20:26:48Z

Last Friday I got Ariel's latest pyschological evaluation. 3 of Ariel's doctor suspected a aspergers syndrome or some sort of PDD disorder. So I agree to have her tested again. We have medi-cal and they will only cover interns to do the evaluation, which I am cool with that. This evaluater was sorda strange from the beginning but I thought well let's just stick with it. She asked why we were there and I said Ariel's doctors want her evaluated for a PDD disoder. She was very quick to say "Well we can't just test her for that and let me make the descision if she has that" Another thing she did was my mom is the best, Ariel and I live with her and she helps me co-parent Ariel. I wanted her to be in the room with me when we were going over Ariel's info. She wouldn't let her. Out of all the evaluations we have had I have never had anyone say she couldn't be there!!! Finally I talked her into letting her in the room.

O.K. so back to the final report. There were so many errors things we never said, editing phrases for example she asked what were Ariel's best qualties. I said "She is a beautiful girl who loves to swim, read and swing. She loves fish and dolphins and her cousin Ryan." well it was edited to that we said she was just beautiful and that I place to much importance on beauty. Just things like this were so false in the report.

There was so many things that upset me and were wrong she judged us without even asking. My friend had given my nephew a bunch of clothes. Ariel and I were at her house and Ariel spilled juice all over her outfit we had 10 minutes to get to the cllinic to finish the testings. I'm like oh no we don't have time to run home, so I looked in my nephews closet who is 2 years old, and Ariel is 9 and found an baggy size 10 shirt that my friend had given to ryan and put it on ariel and hurried out the door. As I am walking up the steps I notice the shirt says "Find a Cure for Autism" I am like oh no this shirt is going to get us in trouble. And it did saying that I am branding Ariel by having her wear things like this. She didn't even get the whole story around it. There are other stories like this in the report.

They rediagnosed Ariel with severe ADHD, Bipolar Disorder and a new one I had never heard of Reactive Attachment Disorder (which her doctors don't think she has after I told them the whole story)

The gal who did the assesment is no longer at the clinic the day we got the report was the last day. I thought it was strange she didn't want to go over the report with us. Normally the other 5 times Ariel has had testing they go over the report sorda page by page, She wanted us out of the office ASAP only giving my mom and myself 10 minutes to go over briefly what SHE felt was the proper diagnoses. And told me not to read the report until I go home and if I had questions to contact her supervisor. Now I know why.

What do you think I should do. Should I contact her supervisor and ask for a re-evaluation?

She also said I just zoomed through the parent questioneres and that I was frusterated and over marked to get answers. I went through the questions with a fine tooth and comb spending hours making sure I was doing them to a T. so frusterated.

Kendra

posted in Parents of Special Needs Children - 6 replies

Pediatric Autistic Dental Specialists??? HELPPPP

2006-07-13T13:11:59Z

My Nicky is now 8 years old. It is probably time for him to have his first dental visit.

But . . .due to the severity of his autism, Nicky is unable to sit quietly while some masked stranger with rubber gloves and a face shield asks him questions and probes his mouth with mirrors and extremely pointed & dangerous objects.

Hell, those bastards scare me, and I'm unimpaired.

Does anyone know of any Pediatric Dentists who either specialize in this area or just even one in the Bay Area who understands enough about these types of children and maybe even a little about autism to know that they will have to either sedate or even knock my son out completely, to be able to perform even the slightest of dental examinations, never mind actual corrective work if needed?

Any feedback would be greatly appreciated!!

posted in Parents of Special Needs Children - 1 reply

Vitamins for Autism?

2006-07-01T18:43:09Z

We're considering putting Logan on the B6/Maganesium vitamins (he's done so well with changing his diet to the cf/gf that we want to see if this will help too). Because he doesn't take pills we're looking at the Kirkland labs liquid "Super Nu-Thera".

Any experiences with vitamins or this brand/company?

posted in Parents of Special Needs Children - 12 replies

cri du chat syndrome

2006-06-26T15:03:33Z

hello...
i'm new to this tribe and so glad to have found you all. my daugter is 10 years old and has "cri du chat" syndrome, also called "5p- syndrome". i'm wondering if anyone else has a kiddo with a similar diagnosis. i'm guessing probably not, since it is really rare (about 1 in 35,000 births), but i thought i'd give it a shot.
also, since my daughter is getting older i am beginning to worry about group home placement and activities for her to do once she is no longer school age. she is nonverbal but uses some signs and picture symbols for communication. she walks but has very poor fine motor skills. we are still trying to tackle potty training...
i have a master's degree in early childhood special education and work as director of an early intervention program so i do have access to resources, but it's much nicer to talk to other parents who can really understand what i'm going through.
looking forward to hearing from you...

posted in Parents of Special Needs Children - 3 replies

it's official

2006-06-26T06:39:45Z

my youngest was coded special ed for developmental delay this week - my oldest is severe ED (bipolar/ocd/aspbergers)....who else has more than one special needs child and how do you deal with it?

posted in Parents of Special Needs Children - 11 replies

Asperger/Autism & Diet

2006-05-21T17:54:41Z

Has anyone any experience or any information on the connection between (Children's) Asperger or Autism and Nutrition? Anything would be greatly apprieciated!
posted by:

posted in Parents of Special Needs Children - 15 replies

Who loves Sesame Street?

2006-04-19T18:06:35Z

I do. And so do my children. But today I love it a little bit more than previously because last night a miraculous thing happened. My son, on the bus home from school, became attached to a big stuffed Elmo doll that they had on the bus. He was so attached to it (wouldn't let it go) that they said he could keep it over night.

Well, of course it ignited WWIII in our living room as his 17 month old sister is also a big fan, but that's another story. It's how my boy, my otherwise nonverbal boy, asked for it. "Elmo" he said. Clear as I've ever heard his say any other word in these last two years. And he said it again, and again. He hugged it and cuddled it and said Elmo a lot, sometimes we had to prompt him to get him to say it (as I think he was getting tired of being our trained monkey by the end of the evening), sometimes he just said it. It was like music to my ears.

End of story. :-)

posted in Parents of Special Needs Children - 9 replies

A letter to the School District

2006-03-27T16:41:23Z

So we had a meeting with our school district yesterday in which their denied our request to add an extra hour each per week of speech and special ed in the home. We're probably going to appeal, but we're starting the process of documenting everything. So a few questions: 1) Does the following letter read well? I want it to sound professional and at the same time register my unhappiness with the decision. 2) Is it even reasonable for us to push this? They are currently meeting with their minimum obligation under the law, so is it reasonable to ask that they exceed their minimum obligation?

Here is the letter (I haven't sent it yet):

On Tuesday, February 7, 2006 at 9:00 AM, you and I attended a meeting in which we were to discuss my request to add additional speech and special education services to my son's IEP. Orion's father was unfortunately unable to attend this meeting, but his wishes were well expressed by me at the time.

I am writing to express my dissatisfaction at the results of the meeting. It was expressed by Orion's educators and myself that while we feel that Orion is progressing well in his current environment, the addition of an hour each per week of speech and special education services in the home would serve the duel purpose of extending Orion's school week, giving him more hours of instructional time, and providing us with additional support and training in the home to help facilitate carryover of his school day instruction. The ultimate goal of these additional services would be to give Orion a better chance of joining his peers in a kindergarten or first grade program at the elementary school without falling behind.

I was told, however, that because Orion is progressing in his current program, and the school district is already meeting their legal minimum obligation for his education, that no additional services will be added. I heartily disagree with this assessment, and left the meeting not entirely certain why our request was denied. I got the impression that you agreed with our assertion that while Orion is currently doing well, that he could do better if he received additional services.

It is as unclear to me now as it was then why our request was denied. I admit that it’s possible that I misunderstood and that you do not agree that he would benefit from these additional services. Can you please clarify that for me? Do you believe that Orion would not benefit from these services? It is also possible that you do believe he will benefit from the services, but that the school district's budget is currently too limited to provide them for him, or that the district is simply in the habit of only meeting their minimal obligation under the law.

I am writing this letter today with three purposes: 1) I wish to express my disappointment very clearly; 2) I wish to have documentation of your denial of these additional services; and 3) as I've stated above, I wish to have a clear reason for the denial.

Thank you for your attention in this matter.

posted in Parents of Special Needs Children - 3 replies

success story

2006-03-14T13:15:05Z

here's the link:

http://www.mercola.com/2006/mar/14/autism_doesnt_stop_teen_from_being_a_star_on_the_basketball_court.htm

posted in Parents of Special Needs Children - 0 replies

High Fevers

2006-03-01T15:34:58Z

I'm sure I've asked this before, may months ago, but something mentioned in another thread makes me want to ask it again. Hunny said that the child she's been working with recently had a setback after a very high fever? How high? My boy tends to get EXTREMELY high fevers (107 is the highest we've seen), but with no seizures. Fortunately, he only gets them once or twice a year, but it always scares the crap out of me when he gets them.

I wonder if higher fevers are more common in autistic children than in NT children? Or in the case of Hunny's student, he is retarded. I wonder what sort of cause and effect relationship may exist with the high fevers.

Thoughts?

posted in Parents of Special Needs Children - 11 replies

McDonalds fries are NOT gluten-free...

2006-02-20T17:28:49Z

McDonald’s facing lawsuits over french fries

Report: Damages sought over news fries contain wheat, dairy products

Updated: 10:36 a.m. ET Feb. 20, 2006

CHICAGO - McDonald's Corp. is facing at least three lawsuits related to its disclosure last week that its french fries contain wheat and dairy products.

Debra Moffatt of Lombard, Ill., seeks unspecified damages in a suit filed Friday in Cook County Circuit Court that accuses the company of misleading the public. Her attorney, Thomas Pakenas, said his client has celiac disease that causes gastrointestinal symptoms when set off by eating gluten, a protein found in wheat.

"You cannot sell gluten-free french fries when they have gluten," Pakenas said. Moffatt's lawsuit seeks class-action status.

Story continues below ↓
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McDonald's said Feb. 13 that wheat and dairy ingredients are used to flavor its fries. Those substances can cause allergic or other medical reactions in food-sensitive consumers.

Earlier this month, McDonald's also acknowledged that its fries contain a third more trans fats than it previously knew, citing results of a new testing method it began using in December.

Jack Daly, McDonald's senior vice president, said in a statement the company has not reviewed the case yet and is testing its fries for gluten through a food allergy research program at the University of Nebraska.

On Friday, Mark and Theresa Chimiak of Jupiter, Fla., sued the fast-food chain, claiming their 5-year-old daughter has an intolerance to gluten. On Wednesday, Nadia Sugich of Los Angeles sued McDonald's, saying she is a vegan and would not have eaten the fries if she had known they contained dairy products.

Until recently, the company had said its fries were free of gluten and milk or wheat allergens and safe for people with dietary issues related to the consumption of dairy items. But this month, the fast-food company quietly added "Contains wheat and milk ingredients" to the french fries listing on its Web site.

The company said the move came in response to new rules by the U.S. Food and Drug Administration for the packaged foods industry, including one requiring that the presence of common allergens such as milk, eggs, wheat, fish or peanuts be reported. As a restaurant operator, Oak Brook, Ill.-based McDonald's does not have to comply but is doing so voluntarily.

posted in Parents of Special Needs Children - 0 replies

the talk

2006-01-20T14:10:47Z

omg....I totally feel like I'm not getting my point across here. Anyone else in here ever have problems getting the whole hygiene thing across to a boy beginning puberty??

posted in Parents of Special Needs Children - 8 replies

experience with CSIT

2006-01-16T02:56:02Z

does anyone in here have experience with CSIT? It's supposed to work really well for autistic kids - specifically high functioning ones like Aspies or PDD. My son's (residential) school has been using it with great success and I am trying to implement it at home while he's for the holidays

posted in Parents of Special Needs Children - 9 replies

Just my intro, I'm new thought I'd share

2005-12-29T04:15:58Z

My name is Krys and I have a son almost 11 who is high functioning autism and a daughter who is nearly 9 and has serious anxiety and mood disorders. It's been a real struggle for many years with Cody. WE finally got him an awesome doctor and got him on SSI about 4 years ago. Living way up in northern wisconsin in a tiny little town has it's difficulties.

Little over a year ago while researching therapists for his physical and speech therapy while on one of his many periods out of school we found an awesome therapy center that uses animals in it's treatments. When we took him for a visit my husband and I decided he had to go there. As he climbed out of the van he was greeted by this little three legged retriever and for the first time in years he smiled and giggled. Something he hadn't done since he was an infant. A year later he is riding horse, with some help and placed top 1st place in 3 differant events in therapeutic riding at 3 differant level shows. He's talking better, has better coordination and a better outlook on things within the year or so he's been going there. He'd been in the schools programs for these since he was 3 and had been making little progress.

After some struggle over the last 2 years we still don't have him back in school. MA has said they will not continue paying for the treatment center after February and the school must be ready for him to come back. They aren't even giving him a second thought. It's a bunch of bull crap and I am struggling for help. The social worker seems to want to make the school happy, the day treatment center doesn't really see a need for him to continue being there, but aren't trying to make the school step up. The lawyer is way way down in Madison and I have a hard time getting ahold of them. If I could afford a private one I would, but it's a struggle.

posted in Parents of Special Needs Children - 2 replies

How do I deal with Social Secuirty?!?!

2005-12-22T04:53:54Z

Venting! Was out of town, upon my return there was a letter telling me to come to the Social Security office that day. I called and said I'd like to reschedule. They said, oh, just come in anytime before December 14. Meanwhile, today I get a letter telling me that they're suspending my daughter's payments...because I failed to come in! And because she turned 18! Why do they make you keep coming in to say "Yes, my daughter is STILL austistic and retarded and can't get a job"? Oy.

posted in Parents of Special Needs Children - 4 replies

Gen'l educ. schools?

2005-12-03T22:46:49Z

Hi, I'm new to the tribe. I have a daughter in 1st grade in mainstream public ed. She was diagnosed w/ autism when she was 2, although because she doesn't have any repetitive behavior, other specialists have described her as PDD-NOS, and b/c she cd read at an early age, one dr said Aspergers. In any case, she's mild and doing ok in school. The school has good services (speech, OT, etc), but I'm worried that she's becoming socially marginalized, now that class focus is on academics (ie state requirements & school ratings) and no longer the touchy-feely world of kindergarten. Anyone know any pvt school options on the peninsula that can handle spc needs kids?

posted in Parents of Special Needs Children - 5 replies

discipline

2005-12-03T00:25:07Z

I just spent the better part of my afternoon on the phone with various administrators and directors of my daughter's school district because of an inappropriate consequence for a disability related outburst....GGRRRR

while in a therapuetic hold on Monday, she scratched the hand of the "holder" and was suspended (today) for 4 days for assault......she is six, low IQ, and in a self-contained room. She didn't even understand what it meant - came home all smiles and proudly presented the paper to me....she thought it was some kind of prize for having such good behavior for the past two days. She was crushed (and hysterical) when I explained that it was a punishment - and for something she doesn't even remember doing!!

posted in Parents of Special Needs Children - 4 replies

$$ at school, but not for SPED?

2005-11-22T19:09:11Z

The following is a post motivated by frustration and anger, but still on the mark:

I am so mad ( as I just mentioned) because at my son's school they have a 22,000 surplus that they want to spend on extra computers( mind you every calss already has computers, as well as 6 computers inthe library, AND a on staff computer tech) even though it has been brought to their attention that due to a 30% drop in staff to student ratio in the inclusion program the studfents aren't having their needs served according to their IEPs. We have asked if the school will fund a part time aide, hich costs about 15,000(as they already fund 3 other poositions in the school). They said they can't.

But they have 22,ooo surplus for computers??

I can think of other words, but they are all 4 letter ones.

posted in Parents of Special Needs Children - 2 replies

Supreme Court rules on SPED legal proof

2005-11-15T16:10:59Z

Court Rules Against Special Ed. Parents By GINA HOLLAND, Associated Press Writer
Mon Nov 14, 6:04 PM ET

http://news.yahoo.com/s/ap/20051114/ap_on_go_su_co/scotus_schools&printer=1;_ylt=AmuuFlVqHkfGpjz25Xi7dy1Aw_IE;_ylu=X3oDMTA3MXN1bHE0BHNlYwN0bWE-

The Supreme Court ruled Monday that parents who demand better special education programs for their children have the burden of proof in the challenges.

Retiring Justice Sandra Day O'Connor, writing for the 6-2 court, said that when parents challenge a program they have the burden in an administrative hearing of showing that the program is insufficient. If schools bring a complaint, the burden rests with them, O'Connor wrote.

The ruling is a loss for a Maryland family that contested the special education program designed for their son with attention deficit hyperactivity disorder.

The case required the court to interpret the Individuals With Disabilities Education Act, which does not specifically say whether parents or schools have the burden of proof in disputes. The law covers more than 6 million students.

The Maryland family in the Supreme Court case had argued that when there are disagreements between schools and parents, education officials have better access to relevant facts and witnesses.

The Bush administration backed the Montgomery County, Md., school district which maintained that the extra requirement would be expensive for local schools.

Chief Justice John Roberts had recused himself from the case, because attorneys from his old law firm represented the school district in suburban Washington.

Justices Ruth Bader Ginsburg and Stephen Breyer wrote separate dissents.

"School districts are charged with responsibility to offer to each disabled child an individualized education program (IEP) suitable to the child's special needs. The proponent of the IEP, it seems to me, is properly called upon to demonstrate its adequacy," Ginsburg wrote.

O'Connor said the court was not ruling on a separate issue, whether states could set their own policies and put the burden on the school officials.

The case is Schaffer v. Weast, 04-698.

___

On the Net:

Supreme Court: http://www.supremecourtus.gov/

posted in Parents of Special Needs Children - 0 replies

SNAFU

2005-11-10T01:43:48Z

The definition of SNAFU is... Situation Normal All F'ed Up...

Now that applies to so many things with Special Needs Children... so many "Normal" things aren't anywhere close to being normal....

For example...

Molly has a loose tooth. She's 5 1/2... It's time for her baby teeth to start falling out...

Holy shit.

For the last two days all I've heard is "FIX IT! FIX IT! FIX IT!" followed by ear shattering screams/cries...

If it wasn't for the complete distress it's causing Molly for have a loose tooth I'd be rolling on the floor laughing...

posted in Parents of Special Needs Children - 6 replies

with guns blazing

2005-10-27T03:48:31Z

had Beky's ARD (placement meeting) this morning....still having a hard time with transportation, but everything else went smoothly. I've been through enough ARDs with Matt over the years that I know how to get stuff done - it stresses me out to have to be so "tough", but I've learned from the best...Matt had a children's advocate who was a real pitbull - she'd come to his ARDs with me when the school wouldn't comply with his mods...she knew just what to say to make them straighten up!

posted in Parents of Special Needs Children - 4 replies

I was scared

2005-10-09T04:35:36Z

at work today. One of my non verbal students had an episode of intense screaming and crying today that lasted for the better part of 2 hours. The antecedent was not at all obvious to me, and he had no menas of telling me what was wrong. He didnt appear ill, had eaten and had fluids. But it seemed as if he was scared to death of something, and was inconsolable. He has some PDD/NOS tendencies, but we believe that his primary diagnosis is moderate to severe retardation. He had two urine accidents in 20 minutes, and was simply, a different boy than Im used to.His mother was also at a loss and said that he'd been acting this way frequently.

I was scared. Ive never in 5 years seen a child scream that hard for that long with no apparent reason.

posted in Parents of Special Needs Children - 17 replies

Tristin's Poem

2005-10-01T22:23:07Z

My nine year old daughter was diagnosed with Bipolar disorder when she was 3. She also started taking risperdal around that time in order to help calm her more violent episodes in the hopes that she would be able to be around other children without posing a threat to thier safety. Recently a diagnosis of Asperger's has also been added to the equation. As the risperdal is beginning to make her appetite unmanagable, I asked the doctor about switching her meds. I myself have BP but I refuse to take risperdal because it tends to interfere with my abilty to write creatively. Anyway, five days after switching to 'geodon' as an alternative (with mixed results...) Tristin trotted downstairs at 5am one morning last week and churned out this poem. It gave me so much hope when I read it, that I started crying. I wanted to post it up here so that it could give other people in similar situations a bit of hope as well...

Jess

The Spider in the Cellar
By Tristin Mott
Age 9
09/27/05

I wake with a start…
Something is there!
It gives me the shivers,
Spikes up my hair!

So I climb down to see
what is making the noise,

And I realize it came
from my chest full of toys!

I pull out my hand
and I gasp with surprise,
For I’m holding a spider
with fangs and twelve eyes!

And to this very day it lives in our cellar,
and I know it will get to my mom somehow….
But for now I won’t tell her.

And now sometimes I wonder,
Did I really just see,
a glimpse of that spider
out looking for….me?

Maybe….

posted in Parents of Special Needs Children - 2 replies

Say no to aversive techniques and physical restraints

2005-09-27T18:07:06Z

Here is an intersting publication:

In the Name of Treatment
A Parent's Guide to Protecting Your Child From the Use of Restraint, Aversive Interventions, and Seclusion

http://www.tash.org/publications/parentguide/inthenameoftreatment.pdf

VISION All children with disabilities should grow up free from the use of restraint, seclusion, and aversive interventions to respond to or control their behavior, and from the fear that these forms of behavior management will be used on themselves, their siblings or their friends.

Their main website: http://www.tash.org

posted in Parents of Special Needs Children - 0 replies

Answers for Autism Walk

2005-09-16T19:21:27Z

I know this is short notice... but I was out sick a
couple of days and planned on getting sponsors then...
but now I have NO sponsors!

Anyways... If anyone wants to sponsor me I'd be MOST
appreciative... the only problem is that in order to
sponsor me, you'd have to pay via Paypal...

Any amount would be appreciated...

Thanks!

posted in Parents of Special Needs Children - 2 replies

educational options

2005-09-13T12:16:38Z

Long story short, I am seriously considering moving to Cali. My (almost) 12 year old needs a really structured school setting - do y'all know of any? We have not had great success with public school SPED in the past, but he has done well in day treatment/private type settings. A boarding school environment (home on weekends and holidays, etc) would also be an option I would consider.

So....are there public school districts that y'all have been impressed with? Does anyone know of a private setting that would be appropriate for a high IQ mod/severe ED kid?

posted in Parents of Special Needs Children - 3 replies

Getting the word out

2005-09-06T15:28:40Z

www.gettingthewordout.org

posted in Parents of Special Needs Children - 8 replies

parents of mentally ill children?

2005-09-05T13:04:48Z

am I it? alot of times it feels that way. my son has (childhood onset rapid cycling) bipolar and requires 24 hr supervision....my daughter also has probs; she is too young to determine whether it is also bpd or just an emotional delay (from the influence of older brother). They are 12 and 6 now and I am exhausted....how am I ever gonna get them through high school and on their ways to leading productive independent lives??

posted in Parents of Special Needs Children - 2 replies

Child dies after chelation therapy

2005-08-26T01:17:14Z

http://www.msnbc.msn.com/id/9074208/

What they don't tell you in the story is that the chelation treatment they were giving him was NOT part of the DAN! protocol and the doctor was not a DAN! doctor.

posted in Parents of Special Needs Children - 2 replies

Has anyone tried the GF/CF diet?

2005-08-16T03:42:29Z

We're considering putting Logan on a casien and gluten free diet. He's already drinking soy milk since he's got some dairy intolerances, and he's got the symptoms of someone who has a problem with the gluten/casien: dark circles under his eyes, no matter how much sleep he gets, dry skin in spots, little white bumps ...

posted in Parents of Special Needs Children - 8 replies

Holland Schmolland

2005-07-07T01:37:20Z

Holland Schmolland
By Laura Krueger Crawford

E-mail: Laura@atticusproductions.com

If you have a child with autism, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this: Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives. You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides and gelato. However, when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans. You rant and rave to the travel agency, but it does no good. You are stuck. After a while, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in wooden shoes, the French fries and mayonnaise, and you think, “This isn’t exactly what I planned, but it’s not so bad. It’s just different.” Having a child with autism is supposed to be like this -- not any worse than having a typical child -- just different.

When I read that, my son was almost three, completely non-verbal and was hitting me over a hundred times a day. While I appreciated the intention of the story, I couldn’t help but think, “Are they kidding? We are not in some peaceful countryside dotted with windmills. We are in a country under siege -- dodging bombs, trying to board overloaded helicopters, bribing officials -- all the while thinking, “What happened to our beautiful life?”

That was 5 years ago. My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we’ve created… well… our own country, with its own unique traditions and customs.

It’s not a war zone, but it’s still not Holland. Let’s call it Schmolland.

In Schmolland, it is perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end to end. You can show affection by giving a “pointy chin.” A “pointy chin” is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person’s shoulder. For the person giving the “pointy chin” this feels really good, for the receiver not so much – but you get used to it. For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say “Oh Pongo.” When mad or anxious, you might shout, “Snow can’t stop me!” or “Duchess, kittens, come on!” Sometimes, “And now our feature presentation” says it all. In Schmolland, there’s not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00am, are all traditional Schmutch pastimes.

The hard part about living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren’t always successful. It’s perfectly understandable that an 8-year-old boy from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year old out of the store kicking and screaming while all the customers look on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people. Where we live, it is not surprising when an 8-year-old boy reaches for the fleshy part of a woman’s upper torso and says, “Do we touch boodoo?” We simply say, “No we don’t touch boodoo” and go on about our business. It’s a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings. And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland who insist that the pants must come off no matter where they are, and regardless of whether another pair of pants are present.

Other families who are affected by autism are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking with a person from Norway, (or in our case someone from Schmenmark talking with someone from Schmorway), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. “Oh your child is a runner? Mine won’t go to the bathroom without asking permission.” “My child eats paper. Yesterday he ate a whole video box.” “My daughter only eats 4 foods, all of them white.” “My son wants to blow on everyone.” “My son can’t stand to hear the word no. We can’t use any negatives at all in our house.” “We finally had to lock up the VCR because my son was obsessed with the rewind button.”

There is one thing we all agree on: we are a growing population.

10 years ago, 1 in 10,000 children had autism.

Today the rate is approximately 1 in 250.

Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic pre-disposition has collided with too many environment insults -- toxins, chemicals, anti-biotics, vaccines -- to create immunological chaos in the nervous systems of developing children. One medical journalist speculated that these children are like the proverbial “canary in the coal mine” here to alert us to the growing dangers in our environment. While this is certainly not a view shared by all in the autism community, it feels true to me.

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

posted in Parents of Special Needs Children - 4 replies

Our son's Online Journal

2005-07-05T14:57:55Z

I apologize for the cross posting.

Our son Logan, recently diagnosed with Autism, has a livejournal where we are recording his testing, progress, etc.

http://www.livejournal.com/users/babylogan/

posted in Parents of Special Needs Children - 7 replies

Change of Moderator

2005-06-29T19:30:06Z

Hey gang,

Since the tribe moderator, Lea Anne, has been MIA for quite some time, I am interested in taking over moderatorship of this tribe. I heve written to tribe, and they say that I should post a thread indicating that is my interest and to see if anyone objects.

Does anyone mind if I take over the moderatorship of this tribe?

posted in Parents of Special Needs Children - 5 replies

Travel tips?

2005-06-28T22:07:12Z

I'm taking my 2 year old autistic son on a plane for the first time in two weeks. Any advice?

posted in Parents of Special Needs Children - 4 replies

Non-Thimerosol Vaccines

2005-06-23T01:24:46Z

When we went to our pediatrician for the first time two years ago to start Logan with his vaccines, we asked her about the mercury because of the possible effects - I have a 10 year old son (adopted by his father) who is severely autistic. We didn't want to take the chance of causing our little one problems.

Our pediatrician was already aware of the possible effects, and her office did not use the vaccines with thimerosol (which was being phased out a few years ago and is not as often used now). So, Logan's gotten all of his vaccines up to this point, and none contained thimerosol, but he's still autistic.

To me, this would imply that in his case the vaccines did not cause his autism.

Thoughts?

posted in Parents of Special Needs Children - 6 replies