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The Autism, ADHD, Special Needs Thread


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Sep 12, 2008, 4:17am   #61
Lescoy's Avatar
Chilling
Girls - I've stayed off this Thread - as my world with my now 17 year old has been pretty upside down - I'll post a whole lot on it - and why - if you have a child with Special Needs - and specifically ADHD, Dyslexia, Dyspraxia and any form of Auditory Processing problems - then whatever you do - if you are in the UK - you need to stand up and be counted - the system fails these kids - and its time it was addressed. I have a Soap Box - and pretty soon - I'm going to be standing on it - bottomline - fight - if you don't - you'll get nothing - and I mean NOTHING.
Sep 12, 2008, 12:06pm   #62
rainrowan's Avatar
Thread Starter
where's my bag?!
Hello esiders, glad to hear of your news, you are doing a great job... I'm glad I checked in here today.

My 6yo started in a private school an hour's ride away. Thank goodness the ride has been helping him relax before school and afterwards. All new teachers and getting speech, O/T, P/T. It is working out, it's only been 2 weeks but he seems to be making positive gains from what I can see at home.

Right before school started, we added a grain to his diet called Quinoa, it's an ancient grain and he has it in the form of a spaghetti-style dish. It is full of protein and what the native american indians harvested. I've noticed more relaxed behavior, longer intervals between impatience and full meltdowns. His GI is much better because quinoa is easily digested and no pain, so he is making more social contact with his family.

His last school was terrific tho I wondered if he had some processing issues that were worsened because it was in a newly established building --new paint, flooring, chemicals, lots of synthetic smells etc -- he always seemed frenzied whenever I went to visit him in the classroom.

As for myself, I'm feeling more positive these days. I am at ease with the knowledge my son is in good hands at school. I'll post a separate thread regarding his placement...
Sep 12, 2008, 12:15pm   #63
rainrowan's Avatar
Thread Starter
where's my bag?!
Originally Posted by Lescoy
if you are in the UK - you need to stand up and be counted - the system fails these kids - and its time it was addressed. I have a Soap Box - and pretty soon - I'm going to be standing on it - bottomline - fight - if you don't - you'll get nothing - and I mean NOTHING.
Lescoy!
yes - yes - yes.... I have been listening to The Autism File, specifically Autism One Radio with Polly Tommey from the UK, it is a series of recorded interviews on Autism available online. I am flabbergasted at how little is being done for the autism (and special needs) children in the UK. Interview after interview, that is all I hear, that the government isn't doing much (or won't) and that the news media won't pick it up because it isn't "exciting" anymore and don't want to expend any more time on the Autism "story". Yes, please fight all you can... I don't understand this odd and unsettling phenomenon, why won't they care??

I hope you're able to take some time to take a breather -- sorry to hear about things with your son... is it adjustment related?
Last edited Sep 12, 2008 at 12:19pm.
Sep 13, 2008, 10:59am   #64
Swanky Mama Of Three's Avatar
my neighbor has 5 yr old autistic twins and SWEARS by chelating/special diets. Her little girl is barely even on the spectrum after years of breathig treatments and modified diets. . . it's really a miracle.
Sep 13, 2008, 7:58pm   #65
esiders's Avatar
wishing and hoping
Originally Posted by Swanky Mama Of Three
my neighbor has 5 yr old autistic twins and SWEARS by chelating/special diets. Her little girl is barely even on the spectrum after years of breathig treatments and modified diets. . . it's really a miracle.
A couple years ago, a little girl in PA died while undergoing chelation treatment. NIH is still studying the value of chelation therapy for autism. Until they make a recommendation, I'm staying away. :(
Sep 14, 2008, 11:25pm   #66
p
Member
I am pleasantly surprised to see this post here. My 4 y/o son was diagnosed with PDD-NOS almost a year ago. He is verbal although his speech is a little behind. It has been a roller coaster ride taking care of him. I never thought he was autistic at all, I always thought he just had a speech delay, it wasn't until he had his first speech therapy appointment that the speech pathologist suggested that I have him evaluated. Some days are good and others not so good. I've been pretty much on my own, my husband is military and was deployed shortly after his diagnosis. We aren't stationed close to any family and I've found it a little difficult making friends. But I guess I really don't have time for friends since I'm a full time college student. Anyway, my son has started pre-k this year and is in a regular class, he does have some behavior problems mainly screaming and throwing things when he gets upset. I'm in the process now of trying to get him into behavior modification because he does bite himself at times. If anyone has their child in behavior modification I would love to hear whether or not it has helped your child. I apologize in advance if this post seems a little unorganized, it's late and I should have been in the bed :) Thanks for reading and I look forward to reading more of your comments.
Sep 15, 2008, 11:09am   #67
rainrowan's Avatar
Thread Starter
where's my bag?!
Welcome to the group platinumK.

My 6yo son has some self injurious behaviors. Because he's been unable to communicate his needs, he's put his fist into his mouth a few times -- it looks alarming, as if he wants to bite his hand out of sheer frustration. We've ruled out any physical pain, which can sometimes be a reason. The child tries to drive away the pain by introducing another kind of pain.

We've just begun in-home behavioral therapy so we're fairly new to it but we've seen results. We've been told to minimize the scratching (or biting) by gently moving his arms away from his legs and putting them by his side. We had to keep doing it without any force, anger or threats. Incredibly, the behavior diminished after about a week or two (sometimes it takes longer) of consistently doing it, but never getting him upset. If he did, we kept a very lowkey expression, allowed him to cry but continued to gently guide his hands away from his legs (mouth).

We're also working on "desensitization". If the child is fearful of doing something or going somewhere, we work on introducing elements of the feared thing in increments. If cars frighten a child, the parents introduce a picture of a car, then another element like toy cars, etc etc until the child is comfortable approaching and stepping into the car.
Sep 23, 2008, 12:51pm   #68
rainrowan's Avatar
Thread Starter
where's my bag?!
There is a new magazine from the UK to USA and Canada called: The Autism File magazine. I purchased my copy from Barnes and Noble (US) Booksellers and most impressed with what I've been reading.

Many transcripted interviews by leaders such as Amy Yasko and Stephen Shore (who wrote "Autism for Dummies", an excellent reference imo). Covers research, advocacy, education, biomedical and more. Covers Autism, Asperger's, ADHD, ADD and other related disorders.

If you cannot locate a copy, there is a link at the site called "Autism One Radio" where you can hear most of the interviews.

This is wonderful. I found it in a prominent of the magazine section, kudos for Barnes & Noble's for featuring this magazine. It caught my eye as I was just passing by.
Sep 23, 2008, 10:00pm   #69
dsk727's Avatar
Member
What an eye opening read, thank you ladies for sharing the stories of your children and everything that they are to you and the daily struggles you face! I am honored to know there are such wonderful parents in the world still today.

While not technically a special need more of a disability, my daughter Jocelyn was born with a Left Obstetrical Brachial Plexus injury. We were told with a little therapy she would be fine by age 1, she is now 2 years and not "fine". When she was born she could not move her left arm, shoulder, or elbow, only 3 of her 5 fingers and her wrist slightly. She has been in therapy since she was 3 weeks old, physical and occupational therpay. While she has recovered most of her arm and shoulder function, she is still very badly behind in shoulder external rotation. She will be undergoing surgery next month.

It's heartbreaking and I will always feel her injury is my fault even though I do know it is not.
Sep 24, 2008, 6:33pm   #70
jchiara's Avatar
is really in love...
Gosh - I sure hope this thread STICKS. I mean really STICKS.
I had started a thread on Autism/Aspbergers Syndrome like a year ago and had a couple of responses but then it just ""..........it would be a really place to have some people to talk to. I mean if those purse threads can have 100s of pages long talking about a particular sale, then we MUST be able to hang onto each other for this MORE important support, but that's JMO....

Anyway, so back to square one - so I have my 2 daughters, they're 'okay' - I had some issues with the 2nd one who's now in 4th grade - her IEP states that she's "OTI" - which is fine, she's made incredible strides and doesn't even need resource anymore during school hours.

My third child, who's now in 2nd grade and now has been placed in a gen ed setting at our home school has high-functioning autism. He was diagnosed at the age of 3 and we had him placed in a Los Angeles United School System preschool. He stayed at this particular class for 2 years and then went onto a K1 split class for 2 years with a special ed teacher. He made loads of progress, but now that he's at this new school, I've been a wreck. He has had some 'focusing' issues, but he's friendly and when I saw him in the hallway talking with another boy, my heart SOARED into the sky because I've always known he's been 'friendly' and 'talkative' but more towards adults. Kids like him, but they often find that he's, of course, focused on one thing and then they get bored and move on....

Now today I had the day from hell and I've been crying on and off for like 2 hours just from sadness....
My fourth child, a son, is an absolute love. He's affectionate, smart, etc., but has an incredibly volatile temper. He hits when he doesn't get his way and I've been so patient with him - I really have. It's not like I haven't done this before, so I'm not feeling like I'm a complete novice...()....
Anyway, he had a diagnosis of "DD" which is just developmental delay and actually went to the same class as my third son - same teacher, etc. He had done really well in that school - always the first in line, did good listening, played nicely, helped out the other kids, etc.
So then we start him at our home school Kindergarten this year. Going from 2.5 hours four days a week to now a 6.5 hour day 5 days a week and it's been awful.....
We're very close with the special ed ladies there anyway, and he's been RUNNING AWAY from the teachers and the yard aids all the time. He hides under the desks, he runs from everyone - down the hall - he threw a chair at the vice principal today!!!!!!! They called me and told me to come pick him up and take him home. I walked in and there was the vice principal that had just come back from a 'walk' with him to try to calm him down and he was on the floor with this sort of evil little SMILE on his face - negative horrible attention - I WAS MORTIFIED.......
We're now stepping up the assessment request. He was going to have it in February, but now we're thinking he needs an aid in place (obviously). He's been aggressive, angry, running, uncooperative. Everyone said it's because he's completely overwhelmed with all the stimulation, he said he doesn't like the new yard, the kids are different and of course, being that it's completely academic, he's wonky....
Originally, his preschool teacher had suggested that he go to another school that had a special kindergarten, but upon observing that class, I found that the special ed teacher had NO control of her class and frankly, this is NOT what he needs. He needs structure - and I'm so frustrated and FRIGHTENED because I know that they're going to put him under that great big huge umbrella that encompasses everything from ADD to PDD NOS to Autism to Defiance Disorder.

I'm so sorry to rant. It had started out to be such a great day - I was so happy and I've never gone from such a high to such a crashing blowing low. There was no computer or TV when he got home. My MIL said that I have him watch too much TV and he eats too much sweets (NOT)......Number one, the ONLY thing he eats for a 'treat' is ice cream so eff her, and frankly, he watches TV when he comes home after homework, but he's also got 3 older siblings.....on the one hand, MIL said it's not a reflection of me as a parent, but then she goes and tells me like it's all my fault that he's this way.... I feel like a failure 1700 ways today......

So all you Moms out there that feel frustrated and angry and lost, don't. You're not in it alone. In fact, I met yet another Mom yesterday who's son is autistic and they just got an aid in place for him yesterday......
I'm sorry for that major rant....
Sep 24, 2008, 9:51pm   #71
Swanky Mama Of Three's Avatar
oh jchiara!!
What an emotionally draining day you've had
I'm sorry, threre's really nothing worse than worrying about our precious kids. Keep us updated on his progress. Before I got through the end of your post about your last son I was also thinking overstimulation.
Hang in there.
Sep 30, 2008, 5:47pm   #72
p
Member
Rainrown- Thank you for your response. I hope ABA continues to be helpful for your son. I look forward to reading more about his progress.
Jchiara- I'm so sorry to hear that you had a rough day with your son. I do experience those days and often ask myself "what did I do that my child acts like this?" Don't despair and keep your head up. You are doing a good job keep telling yourself that.
Sep 30, 2008, 9:36pm   #73
Lululapell's Avatar
Member
Just found this thread...
My son was 4 when he was diagnosed with ADHD. I was the mom who had the screaming child in Target, the child who would down a Gatorade on the soccer field and then jump on the ref's back, the one who would jump off the playset with no fear or idea of consequences. I was determined not to put him on meds. It isn't that I'm totally against meds, but I really wanted to look into an alternative first. So I googled the "white diet". It was something I had heard of years previously. From that I found Feingold.org. At this point I was desperate. My ds had already been kicked out of pre-school and I wasn't sure what to do. I knew I had 5 months before he would start K and then what? So I joined Feingold, got the information and purged our pantry and shelves.
It took us 3 weeks to detox him. The last week was a nightmare. But after he was clean, we started new. This child is a completely different child now. Whereas before something on him was always moving and he could not sit still for more than 1 minute, he now sits and reads for a hour at a time, no problem. He doesn't get in trouble in co-op (and they are super strict there). You would never know this is the same child. Every once in a while he will have something that is not approved and holy moly! It's a nightmare and I thank God, once again, for F.
And incidentally, my dd was having speech issues when we started. Severe ones. I had her in speech therapy twice a week for it. Once we started Feingold, she started talking. I truly believe it was a chemical block for her, as was my son.
Anyway, I just wanted to post here and let everyone know our story and that I am always sending prayers to other parents in this situation.
Sep 30, 2008, 10:24pm   #74
jchiara's Avatar
is really in love...
Well, we just have to be pro-active with our children at school because sometimes (at least I do) I feel like no one's going to know your kid like you do.
As I mentioned, they're 'stepping up the assessment' but there are 6 other children ahead of us....
Also, they became so disgruntled, that basically I have become my son's one-on-one aid in class for the ENTIRE day!!!! This is what keeps him in line. Is it because I'm there? Well, I'm not entirely sure. I'm not hanging on him - he's having an extremely rough transition to kindergarten as I mentioned - but I've been trying to give him tips on how to cope.
When he didn't come in from the yard, the aids which usually stand there like a bunch of friggin' idiots saw me say like 2 words to him and ponk - there he went in. What a bunch of turds - I wonder sometimes that even though I may not have as much specialized education as some of those teachers but I seem to sure know what works.

After 12 years I finally had some time at home to myself but I don't think the Universe thought I was ready for it yet or something. So I'm packing my bag lunch and sitting in a very (yawn) long Kindergarten day. I will practice my letters, do the calendar for the day and of course, have lunch in the cafeteria area with the cute little twins that tell me that they have lots of family.....

Sigh.

At least I got a call from LAUSD telling me what to request to have more information 'assessed' on him - I'm not looking for another placement (I don't think) - I'm looking for help to have him 'included'.....
Sep 30, 2008, 11:53pm   #75
kcf68's Avatar
Hopelessly Addicted!
Just a question for other Mother's with Special Needs kids? My oldest child is 3 with severe delays and youngest 6 mos. I also have older children from my first marriage 21 & 19. They are totally out of the house and in college and have their own lives. I worry about my youngest having the responsiblity of ensuring if he wants to that my daughter is taken cared of after her dad & I pass on. Basically, he would be the only child because of his sister condition. I worry if something were to happen to my son, my new husband and I would not have any grandchildren from this marriage. Sorry so out of context but we are considering having one more child for a playmate for him and her. Do you all think that would be wise or selfish decision? Please be kind in your answers!
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