| 4/16/2008 8:48:19 AM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
honestinlov4u
Abington, PA
age: 60
| Will a Dad do??
I have a beautiful, lovable 4 year old son diagnosed with Aspergers also. At least we are lucky in that Aspergers is high end on the ASD. My son goes to a special school here because we first put him in a Kiddy Academy and they could not take care of him. I have a few questions to ask you...Does your son stim? Does he bang his head?? High tolerance for pain...My son does all of these. He is very good on the computer and at memorization though!!
This divorce is tearing him up as he is never where he needs to be and that is consistancy. These children need the sameness of routine. He is very quick to anger over the smallest, to me, little thing. That will set off the head banging and tantrums, which take a while to get under control...If any of this is of any value please email me and let me know.
It is time to start thinking about IEP's again. Even though he goes to a special school (mixed class - some with different disabilities and some "normal" children) we have to do the IEP's which I am sure you do as well. I am amazed that he is so intelligent, he memorizes many differrent songs, uses the computer extensively, uses the VCR with tapes or dvds and knows the month, counts to 12 and can do many other things a 4 yr old can do. But he has other areas where he is certainly behind and one is potty training. I don 't know if we will ever accomplish that at this rate.
I do know that autistic children can marry and have "normal" children, as some of the help my son gets, that was a question I had and they told me yes they knew of a few that have gotten married and had a child. I would also like to add that since they are so high functioning (Aspergers) they have a good chance of being mainstreamed. My son was diagnoised at the age of 2 also. I knew something was wrong before that, but the pediatrician kept saying wait till he is two. I wish I had not waited. Someone said your son is handsome not beautiful...they don't have these two children. These are BOTH beautiful AND handsome. - now to read some more posts.
Feel free to email me as I live with this on a daily basis minus the weekends. I have the schooling issues as well as the bathing, potty and eating issues. He is extremely fussy when it comes to what he will eat, as he has the sensory issues as well.
PLEASE, unblock your email based on age so that i can send you some email on here, that way you will NOT have to divulge your private email account. This topic is so large that you cannot cover it all here. I am very glad to see you are at least able and willing to learn to help your son. My EX could not deal with it as she has limited abilities as well. By the way, I saw a post on you tube which was also posted here somewheres which showed how extremely intelligent she was. Fist it showed some classic autistic signs such as humming and flapping and then it showed her using a computer (voice enhanced) to tell her story...absolutely amazing. I don't know if anyone else saw it as I am not sure I could find it again. God Bless you on this your jouney, as it is just that...learningf more every day about your son and ASD.
[Edited 4/16/2008 9:39:30 AM]
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| 4/16/2008 7:18:52 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
honestinlov4u
Abington, PA
age: 60
| PS
There is an Autistic young man on here that I have spoken with as well...his name is finn_metal.
Additionally, there are a couple of books you should get for your son. These were recommended to me by a behavioral Ped who sees my son. She is a GREAT doctor who works at CHOP (childrens hospital of Phila) I take my son there due to her reputation...She diagnoised him and now follows him on a 2 - 6 month basis. I would ask a few questions first via email if you can open the age thingy (Gonesailingbabe can tell you what i am talking about) if you would like additional support/talk/information etc.
(edited for spelling and name)
[Edited 4/16/2008 7:20:49 PM]
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| 4/17/2008 4:56:36 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
luvinlifetou
Biddeford, ME
age: 42
| Honest,
I have no block on my email..and I am emailing Dustin about this...I have never had an issue with someone outside my age range contacting me...so Im not sure what is going on there...
Looking into it.
My son stims...but its minor...
Until I realized, he now has a bald spot on his forehead because he has been repetitively pulling at his hair...just running his hands through it, you know..nothing that looks or seems abnormal..until you realize that he is doing it so much...he is actually making a bald spot.
I think the hardest part of Aspergers syndrome is that it is such a high functioning form of Autism that many people cannot and do not see anything wrong with the child at all...until the child is overwhelmed with a situation that a normal child would have no problem with. And their reaction is looked upon as being a 'punk' or defiance or any other thing except for the fact that it is HIS disability...not his unwillingness to participate.
I did not get him diagnosed until he was 8. It was so difficult. His teacher expected him to get in front of the class and read, and that is NOT possible for him. He literally cannot do that...to much sensory overload.
But the teacher treated him like he was being a defiant brat.
The challenges are endless. The learning is constant.
Every day is a new battle. But you learn more each day...and together...we will make it.
And heck...with his brains...he could be the next Bill Gates or Einstien and make mamma a happy, proud, and hell, maybe even rich mama!??!? LMAO...Just trying to look at that glass as half full people....
  
Luvin
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| 4/17/2008 6:22:06 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
honestinlov4u
Abington, PA
age: 60
| Luvin, there is a good site called wrightslaw which can provide a ton of information on creating his IEP, I assume you do develop an IEP for him. The school is required by law to help you with his education, to assure it is appropriate as they say.
I also mentioned a book, he may not need it at his age though depending on his social skills. It is "The New Social Story Book" by carol Gray. The Behavioral Pewd from CHOP told me to get it. I did and was a bit astounded when I read it. It is so simple I asked her about it last month andd she said that it is meant to be read to my son. It was especially written that way so they would easily understand it. It covers everything from meeting people to social situations and how to react in various situations.
I can read that his hair is a form of his stimimg or a sensory issue. They suffer from both usually. I bet it is a stim issue, and that is good as he has found a way to stim which is at least socially acceptable. My son gets on his knews andelbows on the floor and rocks into something solid with his side. He gets pleasure out of this as I ask him if it feels good and he says yes. Sometimes, like tonight, he will ask me if he can stim. I always say yes. I have to find out how to get him to stim in a more acceptable way. Another book I picked up, on my own, which is very worthwhile is "Asperger's...what does it mean to me?" by Catherine Faherty - worth the money. Both books are paperback and not real expensive.
Back to the children. Have you started on his IEP as mentioned before?? Do you have an advocate, or are you going to be his advocate? I am my sons advocate, b ut I had to read and KNOW two books - one is the current law, and the other is IDEA...I will provide the exact names later tomorrow, as I have to dig them out, but it is imperative that you know these books inside out before you have any IEP meetings if you are his advocate. No matter how nice the team seems they have a hidden agenda, to keep costs down. You need to know what they are REQUIRED to provide by law and how to measure the goals you set up.
BTW as far as the age block, I think it is because I am so much older than who you are looking for. I think it is Dustin's way to make sure older people than you want to meet don't bug you. There are actually two ways to handle it. One - up your age max. Problem is you can have hundreds of old perverts bugging you. Second way make me a friend of yours and than I can email you as the friend is an override to the age. You can check me and the information on the age thing through Rains or gonesailingbabe or wolfcreekgal to name a few.
I have a lot more information as well as questions. I will not post the questions here.
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| 4/17/2008 6:27:50 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
honestinlov4u
Abington, PA
age: 60
| PS
I was in the eye doctor for an exam and at the end my son was melting down. Some old lady kept looking at him and mumbuling so I finaly went over and said I was sorry but he was autistic..Not a word from her, as you said a lot don't know they are autistic because they are so high functioning...I hope he does make you rich. These kids are SO intelligent in certain areas...WOW.
Good night luvin, I am going to the tube...Let me know if you open up your profile for the email. If you make me a friend I will see it so I will know I should be able to email you right away.
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| 4/17/2008 6:59:26 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
honestinlov4u
Abington, PA
age: 60
| I am back because I found the two other books I mentioned you would need if you are his advocate luvin. Both books came from wrightslaw, both are must haves!!
Book 1 - "From Emotions to Advocacy" mine is second edition - by Pam and Pete Wright
Book 2 - "Special Education Law" second edition also - by Peter W. D. Wright and Pamela Wright - This book has the "IDEA" 2004 and the lawyer explains everything behind it as well as the applications it was meant to have, does have and how you should use it to your advantage.
Book 1 emotions to advocacy was the very first book I read as it was and still is the most highly recommended way/one to start with. Now there are additional books you will want to read, but these two books you must know inside out. Take notes and highlight them. You will use these over and over! They are not light reading so get ready to sit down with a soda or coffee and when it is quiet go for it.
Good luck!!
Terry
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| 4/18/2008 6:43:06 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
luvinlifetou
Biddeford, ME
age: 42
| I have a case manager for him through an agency that specializes in Autism.
She is awesome, there for me 24/7 if I have questions.
We do in house counseling 3 times a week..for three hours at a time...
Im not sure your son is old enough for this...but there are a couple of great kids story books, fiction, but the hero of the story has aspergers syndome...and it is told through his point of view. Its called "Blue Bottle Mystery: An Asperger Adventure" by Kathy Hoopman. You can get used copies on amazon for 4 or 5 dollars.....
My son loved it.
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| 4/18/2008 10:43:55 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
toofunny
Fair Oaks, CA
age: 40
| Hey Luvin, my son was born preemie at 24 weeks, and has his 'glitches' as we call them, not big on labels since it causes the adults around to limit expectations. Anyhoo, with aspergers and several other autistic disorders, one common factor with these and most disorders is what they call 'Sensory Integrative Dysfunction'. The pulling of the hair as you described is a common sign of sensory overload and it is a self regulating behavior. The best book on the market that ALL parents should read is called "The Out-Of-Sync Child", after reading that book you will have a true understanding of what he is feeling and going thru and how to prevent the overloads, and how to prepare him for overstimulating situations.
Funny thing about the book too is you will TOTALLY understand all the people you have ever known also.
If you don't already have an IEP get one immediately. If he has not been assessed thru school or insurance for SID then get him assessed immediately, the sooner they get therapy the better.
This is one of the best websites to start with researching:
http://www.nichcy.org/ National Dissemination Center for Children with Disabilities
Search for Sensory Integrative Dysfunction, there are numerous sites out there with info.
Also, become very familiar with IDEA - Individuals with Disabilities Education Act. Not light reading, but will arm you with what you need to fight for him.
If he is diagnosed with SID, you will be amazed at the changes you will see once therapy starts.
And remember you are his best advocate, if he is needing something fight for it, don't take no for an answer, fight for it and with the urgency that it was needed yesterday! Time is of the essence and unfortunately you have to really put a fire under them to get things done.
I have battled schools and insurance companies for the last 11 years and whether its available or not the first common response to a request for services is no, just don't accept that. Do your research and educate yourself on everything to do with it and whats available and then find it.
You should also research the local parent advocates in your area, they will be the best to assist you with all this since they are in your county and know the local regulations i can only really help you with california ones  .
Hope that helps, god bless you and your son, hes beautiful and handsome.
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| 4/19/2008 12:04:48 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
luvinlifetou
Biddeford, ME
age: 42
| Thanks Toofunny...
We do have an IEP...and my case manager for him has been invaluable as a resource..I appreciate all your input...you have some stuff I hadnt thought of...
THANKS so much!
I have to run but I have a couple ideas for you if your interested email me...I have to jump off the computer and do some chores...
bleah..
LOL
thanks again
Luvin
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| 4/19/2008 4:02:51 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
theironmandan1
Port Saint Lucie, FL
age: 39
| I dont have a child that has autism. But i did build a center at sea world, called discovery cove a swim with a dolfin(sp) resort, a famous base ball player and son were ahead of me and my daughter, as we listened to the sqeaks and chirps of the animals his son leaned up and said to me ..Hey i'm next .his first words ever. his father could not believe it. to make a long story shorter. the sounds a dolfin make, stimulate the brain waves in autistic people, there are great studies going now 8yrs about this. Discovery cove orlando fl. If you income is in range The Ronald mcDonald house fund will pick up the tab. good luck
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| 4/19/2008 4:15:22 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
luvinlifetou
Biddeford, ME
age: 42
| Wow...thanks Ironman..I will look into that!
appreciate the input!
 
Luvin
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| 4/19/2008 4:17:41 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
gonesailingbabe
Des Moines, IA
age: 45
| Hey too funny is invisible if anyone knows how to contact her - I'd like the info on the Out of Sync Child to order it....I think it would be a great resource at the school where I teach for the other educators.....
Thanks!
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| 4/19/2008 5:48:03 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
luvinlifetou
Biddeford, ME
age: 42
| You hear that Toofunny?
You have to contact us...if you can send me the link I will pass it on..
or if you can just post it here..that would be great!
Thanks hon!
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| 4/19/2008 6:51:36 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
toofunny
Fair Oaks, CA
age: 40
| Sorry, had to work today, and was tired last night when i seen your thread but didn't want to not share this, just too tired to have realized that i didn't give you enough info on the book, my apologies for that 
Luvin, with your iep if you request in writing that you want an emergency program review and you want him assessed for sensory issues then they typically have only thirty days to comply with your request, meaning that they have to have a date for assessment within thirty days. Don't ask, tell them!
Here in cali Easter Seals is the agency that will first assess with our school district, not sure if its the same where you live but the school HAS to tell you what agency will be assessing him so ask them and get their contact info for follow up.
the book 'The Out-Of-Sync Child' is by Carol Stock Kranowitz, you can get it on ebay for a buy it now price of $9.99, the book usually retails around $17.00 in the book stores. She has other books too that are great. It is also available at the libraries but is in high demand and usually have to wait weeks to get it. You will want a copy of your own,
just be careful, i have loaned mine out so many times that i have had to replace it three times and now going for a fourth time  not everyone remembers to return it, or they just decide to keep it, not sure 
Her website is http://www.out-of-sync-child.com/default.htm
Unfortunately most doctors are uneducated on it and dismiss it. When you read the book, you will have that OMFG feeling, it makes so much sense, explains the brain in lamens terms so that anyone and everyone will understand it. Everyone has sensory issues at different times of their lives, you will just be blown away at this book. Everyone considering having children or dealing with children should read this book, its not just for the benefit of children with disabilities. And, it also helps a great deal with handling the adults around you too And I've yet to not hear from someone after reading it about how they now understood themselves better, including me!
This site also nutshells the info for you to read: http://www.autism.org/si.html
Every child/person has their own unique diagnosis for this like a finger print.
Search Sensory, Sensory Integrative Dysfunction, Sensory Processing Disorder, etc and you will get mounds of info on it.
Sorry about the invisible thing, but it keeps the pervs at bay
Oh, and this is a good one too:
http://www.sensory-processing-disorder.com/sensory-integration-dysfunction-symptoms.html
Shouldn't have gotten me started Hard to stop once started
I'll email you the links too, glad the info was helpful.
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| 4/19/2008 7:21:40 PM | Im Looking for Support...From other MOMS dealing with AUTISM. | |
honestinlov4u
Abington, PA
age: 60
| Hello luvin,
I am back to tell you that all the info you are hearing is in the emotions to advocacy book i recommended. The book is written by a lawyer so you know it is fact. PLEASE order it and read it!! would you care to email?? There is so much more...you are here to make additional contacts as I am, but having gone through a few years of this and a lot of lawyers, I have a few questions concerning your son. Regardless, I will continue to post to try and provide new or helpful information to you as long as I am able.
Have you looked up the book "aspergers...what does it mean..."? I have read this and it is great, will provide you with an insight to your sons feelings as well as guidance for you. These years are very important and the federal gov. has laws the schools must abide by (IDEA) as I mentioned before and IEP rules/laws which the schools don't want to listen, but by law must.
This is a long hard road, but you are your sons best advocate...
Hope to hear from you and hope to stay in contact as people going thru it are more informed, in my opinion, then someone who is not personally involved on a day by day basis.
Terry
[Edited 4/19/2008 7:25:14 PM]
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