Did I make the right choice here with my Aspie?

Nicole - posted on 06/18/2012

I would have said no as well. No way does he need any of those. He needs structures in place that will help him. Look for an ABA therapy. My son is 9 with Aspergers and the therapy has been working well.

Debora - posted on 07/26/2010

One thing I forgot to say.. It's great you're teaching him sign language to communicate. That will help avoid some of the frustration meltdowns. One of the country's foremost Autism activists today, did not speak until he was 12, and he is a very intelligent person and fully able to communicate in speech now. You can read about him in a nonfiction book called Elijah's cup. He is one of the people who help the mother in the book whose son is autistic.

Debora - posted on 07/26/2010

Yes! you were definitely right to refuse those treatment from the dark ages! Your son can benefit from your love and care more than anyone can predict at this time. Check this inspirational book out of your local library: Sonrise, the Miracle Continues, by Barry Kaufman. It will open your eyes and give you great hope. You can also try looking up Optimum Institute (I think that's the right name) or Barry Kaufman online. They run a program in New England that specializes in helping parents with autistic kids help their children. They will send you information and even give you help and advice on how to raise funds to go to their campus and take their training. Best of luck to you and your little guy, and never doubt you are doing the best thing for him by keeping him where people love him and don't use him to experiment on.
Debora

Marian - posted on 07/24/2010

Ok, my son has Asperger's he's not an Aspie. You don't call kids "downy's" if they have Down's Syndrome or "Lukies" if they have Leukemia. Lets not minimalize what our children have by giving it a cute nickname. I don't appreciate the label "crazy" either, isn't this what we are trying to avoid for our children, being labeled? Lastly, if they don't have treatment close by for your son, moving is a good option. There are plenty of places that have good programs operating within the local school systems for special education children as young as 3 years old in some states. I've never heard of Lithium treatment, E.S.T , or institutionalizing a child with Asperger's.

Amy - posted on 07/23/2010

HAVE YOU THOUGHT ABOUT MOVING?! There are sooo many things that can help your son with out harming him in sooo many other parts of the country and possibly in your state.

Nancy - posted on 07/22/2010

I'm SHOCKED!!! at the three types of choices you had to choise from. This are not the right choice for any child, you did the right thing. There are much better sevices out there even for a working mom and her child. Call the school in your area ask for the special education dept for reference help. Call you local hospital and ask for social services they might help guide you.
and keep looking on the net there are some good ideas.Hey the doctor that diagnose him they should be able to start pointing you in the right directionand if that was his direction he or she needs to bring themselves up to date.

Valerie - posted on 07/21/2010

I agree with one of the other posters who gave you the LAW about the school district. Your son is 3 and, therefore, old enough for preschool. It is the district's LEGAL obligation to provide your son with free and appropriate public education, or they have to pay for a private school that can educate him, regardless of the district's financial situation. My son has been on meds since he was , but he also has severe ADHD and ODD. He is now a bright, engaging, loving 11-year old who is going to play trumpet in the 6th grade band. You ABSOLUTELY did the right thing! Don't doubt that for a second! He's not schizophrenic or a psychopath, he simply has Aspergers. With proper therapy he has the chance at a full life that doesn't include a state hospital (unless he's the one running it!)

Rebecca - posted on 07/21/2010

i feel you definatly made the right choice, i have been to many diffrent places and offered many diffrent medication and therapy options as well and i refuse, we tried 2 diiff medicationd and to me the side affects were way worse, she is non medicated and only goes to therapy as i feel she needs it just to talk to someone when she dont want to talk to me, i give you props, it is hard raising children in the day and age and even harder when they have a disability and thre ar esome people out there who would have just gave him up for the mere break, so you are a wonderful mom and made a wonderful desion in my book

Robin - posted on 07/21/2010

Absolutely, you made the right decision. I can't improve on any of the other advice you have received here, so let me just say, "Good for you, Mom!" You know your child better than the "authorities", so if there is something that strikes you as wrong, by all means get more information before you agree to it!

Angela - posted on 07/20/2010

Oh my goodness - I woudl hardly call that treamtment! Thos people must be living in the stone age. My son is on medication and sees a psychiatrist once a month - he is very emotional and hyper. But lithum is NOT a medication that he takes. I'm just in shock over what these people are telling you. I blog about Asperger's and there are a couple of posts that may help you. One is on behavioral therapy and another is a particular book to help identify your son's sub-type of AS. http://www.angmoore.com/category/asperge...
You absolutely made the right deicsion. Try and find a local chapter for ASAA and see what they can do. Their members should have a lot of resources and recommendations for you. Here is the national link if you need to find your clsoest chapter http://www.autism-society.org/site/PageS... I will keep your family in my prayers. I hope you have a good support system with family, friends and church.

Erika - posted on 07/18/2010

Jackie,
Your son has Aspergers, the treatments described are generally for people with severe depression and mental illness. Lithium can be a pretty harsh drug I would not allow my child, diagnosed with PDD-NOS to be put on Lithium. I am curious as to why they want to put him on lithium, is it because of sensory issues if so maybe a behavior modification plan should be implemented. Check out the IAN Kennedy Krieger Institute. It is located in Maryland but you can become a member of the site...lots of information on Autism spectrum, sensory, ADHD and more for family resources and their siblings to include studies...I found it very useful and informative. Part of the Kennedy Ctr. is also located in TN at Vanderbilt Childrens Hospital. I am sure there are some near you these sites will point you in the right direction. Here is the link...good luck to you and your family, especially your son.
http://www.ianproject.org
Erika W

Cheryl - posted on 07/18/2010

Glad you have found some support. Keep trying and keep loving him, that's the best thing you can do.

Jackie - posted on 07/18/2010

Thanks guys. I feel a lot better. I was never considering the bs that they said i had to do for my son. I had planned to home school him actually. A friend of mine is a speech therapist in another county and she found a few loop holes to get him therapy and make the state pay for him even out of the state if need be. She awesome for that. Her husband is a lawyer and did the research and is willing to take this to court against my county if he needs to.

Cheryl - posted on 07/16/2010

NO WAY would I let anyone do anything even remotely close to the "treatment options" you got!!! Good for you for not letting them near your son. My son has no official diagnosis yet, but we are still trying to get there. He's definitely got troubles and maybe his older brother does too. I have Sensory Integration Disorder as does everyone on my father's side of the family so it's a little baffling to me that the DR can't see the problems in my kids, but I digress. Raising a Sensory Smart Child is a pretty good book for helping with any sensory issues and it gives a short list in the back of some websites and phone numbers for organizations that may be able to help. There is also a whole list of food related therapies if you need help with the gluten free diet. Good Luck! :)

Heather - posted on 07/16/2010

Yikes! You definately made the right call there.
Again, just to reitterate, your local school district should be helping you...but you have to be strong and advocate for your child since often districts try to get away with pushing parents around when doing the right thing is going to cost them money.
Another resource that you may want to check out is a local Head Start/ Early Head Start Program. They are across the nation and free for those who qualify. They are mostly for those who are at or below 100% of the federal poverty level, but can take up to 10% of enrollees above that income level, and they must have at least 10% with documented special needs. They provide comprehensive and inclusive services for all sorts of special needs. Go here: http://eclkc.ohs.acf.hhs.gov/hslc/HeadSt... to find a local office. BTW, no I don't work for Head Start...but Iam active in it and do a great deal of volunteer work for them because the program has done so very much for my family. I get nothing from referring you or anyone else to them other than knowing that you may be hooked up with a fantastic oppertunity for your kiddo and your entire family!

Kelly - posted on 07/16/2010

WOW! Those don't sound like viable options to me, either. I don't know how functioning your son is, but I can tell you what we did with / for our son.

He does have a behavioral therapist that sees him twice a week. We have an IEP for school (not that they follow it) and he is on medication. More for the 'symptoms' that go along with his version of Aspergers. He currently takes Lexapro for his anxiety and Focalin for the ADD / OCD and impulse control components They have helped immensely. My son is now almost 18 and has been on meds for 10 years now. He is also mainstreamed in school and very high functioning.

I would not have chosen any of the 'options' they gave you, either. Search out another doctor.

Elanor - posted on 07/16/2010

I think you are damned right!!! My son got easier recently,there's no way I'do my do any of those things to my son. no matter how hard he got!
Get a book called The Secrets of Happy Children,
Apparently the author (Stephen Biddulph) is aspergers too
I diddn't know that when I got the book, but I do find it is very useful.
Well done you, for being you!

Kathy - posted on 07/16/2010

Go directly to your local school district (I don't care if they're "poor"). Show them the diagnosis. They HAVE to provide services...it's a FEDERAL LAW. Keep documentation and records of EVERYTHING - dates, times, who, and notes of conversations. Walking in with a tape recorder is a GREAT way to make sure you have conversations well documented. The school district has certain time frames within which they must respond - check out the fed laws re: IEP and 504 - under IDEA and I think ADA laws. If they don't follow the laws and provide the proper services (and the WILL fight it in all probability), file a formal complaint with the State Board of Education. There will be hearings scheduled quickly and the school district has to respond. Schools receive funding for every 504 and IEP they have - unfortunately I've found that they don't spend the money on the child it's received for....

FIGHT FOR YOUR CHILD. Do NOT let the State bully you into barbaric treatments. Also, do some internet research for a local education Advocate for children with special needs. It may cost you a bit, but it's worth it. I had a little "pit bull" who helped me out. She knew the ropes and the District was actually afraid of her!

Celia - posted on 07/16/2010

To Erin who 'makes too much money' for EI services. If these are through your school district, they are FREE, paid for by our taxes. Don't let them say No to you! I know, because I work in that field in another state.

Celia - posted on 07/16/2010

Stick with your gut reactions, mom! By federal law, you should be able to get PT, OT and speech therapy for your son. Is he a danger to himself or others (biting, hitting, kicking, etc.?) Scour the web. There are many websites that offer programs that would help your son that you can do at home. I'd love to do a home visit with you and help you figure this out if I lived closer! Have you contacted your school district to see what early childhood special education they have available?
cboyd, early childhood special educator

Cynthia - posted on 07/16/2010

I would say whole heartedly YES YES YES...frankly none of those sound like a treatment option to me! (More like some form of medevil torture) No way I would do any of that to my child.
As far as seech therapy...contact your local school system or early intervention...here EI stops at the age of 3 and the public school system takes over. But both of them have speech therapy and your child should qualify.

Susan - posted on 07/15/2010

My oldest son who will turn 22 next week has Aspergers. Although he was in regular education, the social skills were tough. They got better the older he got but it was still tough. He was on adderall for a number of years, and also went to couseling for 6 yrs. I would never do any of those treatments, we were in a small town for 5 years and they never suggested these.
Susan Thomas

Angela - posted on 07/15/2010

I believe that you made the right decision! It would have been the exact choice that I would have made. My son's motivation for success has been from our closeness and love.Children need their parents tender loves. As for Electro-shock therapy or lithium I would never give my child either of the 2. I want my son to develop naturally. Look for resoures on line that can help you w/speech therapy. I'm struggling too because we moved away from a good autism school to a small community. My son was to weak to handle all day school anyway so we're going to do public special ed w/a lot of my supervision.

Melanie - posted on 07/15/2010

It depends on what they meant by electric shock.If they meant E-Stim or electronic stimulation it actually feels good to most autistics and it may be that they suggested it as a way to provide a relaease for him. However I would not recommend it. It feels good but serves no purpose unless he can tell them at what level it feels good. The other treatents are outdated and ridiculous.

Jackie - posted on 07/15/2010

Erin - here they have Birth to Three which is too help in developmental, phsychological, an speech issues. I cant get it because I make too much money. The really sad thing is that I barely make enough to scrape by. I'm a single working mom who gets no help from the father whatsoever. I've never received child support but I still dont qualify. I make $50 a year too much.

Carolyn - posted on 07/15/2010

read one or all of Temple Grandin books she is an adult with Autism and she had great insights into the mind of some one with Aspergers. Here is a link to one of her speeches.
http://www.ted.com/talks/temple_grandin_...

Erin - posted on 07/15/2010

Check to see if there is an ECI (Early Intervention Program) in your area. They come to your house and are specifically focused on under 3. They do sliding scale fees, and if you are on Medicaid, it's covered. At 3, they can get into the PPCD program at your local elementary school. ECI was wonderful in helping my son!

Annmarie - posted on 07/14/2010

FYI- once your child is school age the school district has no choice but to provide your child with " appropriate placement" former pres Clinton passed the law added to disability act..maybe called ACT 80 check it out. I got an autism specialist to diagnose my son and write down the exact educational type of class he required. When the school saw that they knew the had to make a pdd classroom and for 6 months of that first year my son was the only one in the class with a teacher specializing in autism and special needs as well as her assistant. Unfortunately before they are school age not much can be done. I salute you for your decision and looking out for his well being. I would have asked them to zap themselves first to see if it hurt...lol

Jackie - posted on 07/14/2010

Man now I wish I'd stayed in Texas. I lived in Galveston until I was 7 months pregnant with my son. Here in southeast Kansas theres nothing that i have found for him. Im not a big fan of medication in the first place and i prefer homeopathic medication. I do give him melatonin at night to help him sleep. We use vitamins and I'm going to start him on a gluten free diet as soon as i feel that i have enough info to properly know what im doing.

Christi - posted on 07/14/2010

omg! i wish you lived here in texas. my sister was in a temporary facility in austin called meridell. she was there about six months, live in, but we could see her anytime. after just one week, they were able to diagnose her with autism and aspergers and get her on the path to helping her. it was hard to be so far away, we live in dallas, but when she came home, omg, she was a completely different person. they did none of that crap on her, just gave her the love and compassion she needed along with the CORRECT medications and she is like a 'normal' teenager now. she even had her first boyfriend this year!!! you were not wrong for turning them down, that is just barbaric what they suggested.

Cindy - posted on 07/14/2010

OMG!!! Seriously, that's what you were given for "treatment"!?!?! I feel for you. My best advice is to educate yourself as much as possible about Autism and Aspenger's since you will be your son's only advocate. The school district MUST provide some form of education once a child is 3 or an acceptable form of therapy (not one of the ones listed above). Sadly, you may end up spending money and making a 3 hour trip to see an apporpriate doctor but it will be worth the cost if you can get an appropriate second opinion. Make sure you take documentation of your state hospital recommendations with you so there is a comparison. Good luck and yes, you totally made the right decision.

Fiona - posted on 07/14/2010

Jackie,
You certainly have done the right thing! The 3 options they gave you are completely inappropriate. My daughter has Aspergers. My understanding is that one of the big factors in diagnosing "Classic" Autism vs. Aspergers is speech delay. Usually, if a child has a speech delay is signifies "classic' Autism rather than Aspergers. Just a thought. I am not a fan of labeling children. However, a correct diagnosis is very helpful when it comes to treatment.

Marla - posted on 07/14/2010

Jackie , my son has Asperger's as well . He is 15 in Aug he does not have behavior issues at all never did . He does however have problems with not "Getting it " ie humor sometimes what is funny to him we" don't get it " I have never heard of shock treatment to treat any form of Autism , especially one so young . good for you for refusing . In our case the anti-anxiety drug has worked wonders. No more I'm weird and wish I had never been born suicidal talk . big relief to me . what kind of symptoms does your son have . talk therapy works best for us . good luck and pat yourself on the back for not giving in to the Doc's suggestions

Arlene - posted on 07/14/2010

Please stand tall and continue to make those decisions from your heart. Your son is a very special child, and he has you to help him through this world. Keep up the good work. I hope that other mothers can give you some help. Good luck and god bless

Julie - posted on 07/13/2010

Continued from below..... his thirst for knowledge to help him learn social skills that he was lacking. Very rarely do we have issues except for school because he thinks that certain things are just to simple and easy for him, so he can go back into his bubble for short periods until the teacher says something he doesn't already know! You did the right thing and I'm sure that other parents will agree 100% with your decision!! He is far better off in a nurturing environment without intervention if they are the only options you have available.

Julie - posted on 07/13/2010

I am flabbergasted that they would even suggest that you send him away. Aspie kids have enough problems with contact, and ripping him from what I feel would be the only situation that he would likely give someone a hug is ridiculous! its as if they have gone back to the 50's and the "out of sight, out of mind" mentality of special needs! My son is 10 years old, and we didn't get a true diagnosis until he was 7 years old, even though from the day he was born I told them there was something "not quite right" from the day he was born! (I will never use the terms wrong, or normal when describing children with any disability). I have never felt the need for any treatment or medication. Through communication and understanding we together have always managed to work through any problems my son, or us as parents have come across. The thing with Aspie kids is they know that they are different from their peers in William's words "I feel like I live in a bubble, and everyone is on the outside, I would love to jump on a hedgehog, or better still a board with loads of nails in, because I don't want to hurt any creatures, and pop my bubble!" William is a very obnoxious child when it comes to other children, however he is highly intelligent and loves to learn, but we harboured

Nyree - posted on 07/13/2010

I have not heard of anyone using those treatments for Autism in years! You did the right thing. The most important.. let me stress THE MOST IMPORTANT thing for your son is to be with you and your family. He needs to know that you support him and will help him become the person he is meant to be, regardless of what end of the spectrum that may be.


I agree with a previous poster. Contact your school district. The IDEA law states that kids 3 and older can receive services from their local school district. They should be able to teach him things like the PECS system for communication (a picture system) and many other therapies that cost a lot are free through your district... and a little side note.. if they can't do it for you there they HAVE to provide you a place to go that can..and they HAVE to pay for it.. it is the law! (I am in the middle of my Autism Graduate program.. just finished my classes on this very subject) If you have any other questions I I would be glad to help

Jackie - posted on 07/12/2010

Nearest childrens hospitol is 3 hours away. I work full time to pay the bills (hey it works some months. others not so much but I try). Theres help for Autism in the school district but they know nothing of Aspergers and they cant help me until hes in preschool at least. OUr school district is very poor.

Sharla - posted on 07/12/2010

yes you made the right choice. I have a son with Aspergers and we tell him it does not mean there is anything wrong with him. that it just makes him special and he knows he is different then most children but we focus on the good differences. the things he can do that other children his age can not do because they don't have aspergers. as far a speech goes you can get books that will help you work with him at home till he is old enough for school then teh school will help you.

Jodi - posted on 07/12/2010

hey i have a five year old with autisum he didn't talk tell he was almost 5 so we did the same we taught him sigh languge. he loved it and he started to try talking more because the stress was less and it didn't matter if we didn't understand because he had a way to tell us. you did the right thing. i live in nowhereville the pre school is all that offers help around here. they did a pretty good job. but i wasn't totaly comfertable leaveing in all in there hands. im glad i didn't my son and i are very close and i have an easyer time knowing how to help him when he dosen't understand or acts out. stand stong your his mommy and you realy do know best

Rachael - posted on 07/12/2010

WOW they sounds absoloutly horrible and should be reported for suggesting such horrible so call 'treatments'. U are the parent and u will know in yourself what the right hting to do is, give him plenty of time and affection and teach, teach, teach, research, research and research, books, dvd's, other parents from groups etc and you will have all the info u need to help your son way better than those other options. U can do a great job!!!!

Sheila - posted on 07/11/2010

Hi Jackie,

Just based on the posts of others, have you contacted your local school district to see what support is there? To be honest, I have nver heard of lithium as a treatment for Aspbergers'...it is more common for bi-polar disorder.

You must have a local autism organization that can be contacted....perhaps they will have a list of resources/specialists within a reasonable commute. Where is the near Children's hospital?

Sheila

Jackie - posted on 07/11/2010

Thanks guys. Hes not doing bad at all. Hes not talking and hes 3 but I've been teaching him sign language and hes picking that up like crazy. Aspergers is my only diagnosis and after doing much recearch on the subject I do agree.

Melissa - posted on 07/11/2010

Based solely on their treatment options, it sounds like the doctors in your area are far behind current thinking. Was he given any other diagnosis besides Aspergers?

If those are your only alternatives, do your own research and get some therapy materials online. There are so many books and even DVDs available that you are bound to find something that might work for him. Or get on a waiting list for treatment in a nearby city. It's not unusual for parents to drive to get treatment. It stinks, but depending on how well or poorly he's doing, it may be worth it for you.

Alisha - posted on 07/10/2010

I never heard of electro shock therapy that too me sounds like tourture too...I think you absoulty made the right choice! I would never have my son go through any of that either!...your doing what you feel is right for him and thats what matters...hell thank you later for not shipping him off to live in a hospital..good for you! stay strong!