Asberger Support

s.

My son, Skyler, has asperger's syndrome. I can not tell you how pained I am to hear of your news. I sense and can relate to your confusion and sense of being overwhelmed. There is help and hope for you and your child. And if you are ready to dig in and tackle this, you will come out the other end more compassionate, more patient, more loving and centered than you ever thought possible. You will be given a privilaged view-point of mother hood and children that other mothers will never have. I know that because I have Skyler and then I have my daughter Gracie who is so easy. I have often said that Gracie fills me and Skyler sucks it back out of me. But in reality it is Skyler who has truly changed me. It is a journey in life I would have never chosen if ask, but it is a journey in life that has profoundly changed me for the better. We knew something was wrong from about 5 months, but it took until he was 6 years old to get a firm diagnosis. Since he was 6 months old we have been doing intense therapy with him. Sensory Integration Therapy is essential. We have found that the best therapy to increase social and emotional intelligence which is where asperger's children really score low is Stanley Greenspan's Floortime therapy also known as DIR. It has changed our lives. I can not say enough about it. We have done every mode of therapy out there including diets, OT, PT, Speech, you name it. Floortime therapy is what truly helps these kids learn problem solving techniques, abstract thinking, social sensitivity, and communication skills. My son is 7 years old now and is warm, wonderful, very well liked in school, and has a 100 average in ever subject. I always say he will never be a politician since he will never know how to work a room, but I have faith that he will be happy. He has his difficult moments that is for sure...social nuances slip by him too often which cause huge problems at times, but to the untrained eye...no one would even guess he has Asperger's. It is totally due to the floortime therapy. Look up Floortime Therapy on the web to find a trained therapist in your area. Make sure they are trained by Stanley Greenspan's group or else they are not doing actual floortime therapy. Hook up with and Asperger's support group in your area, but only continue going if the group is positive and proactive in educating parents. Support group that just moan and groan tend to do more harm than good in the early stages of trying to deal with the confusion and maze of doctors and school issues. Please e-mail me at ____@____.com if you ever need a real voice to talk to who understand. Asperger's is a very difficult thing for children and parents to deal with. The children are bright and seem quite typical at times so the world does not give them as much tolerance and sympathy as they need. However, know that you have a diagnosis, you have a real starting point to get help. H., you will be in my daily prayers. Know that there is someone in this world who will bring your need to God everyday.
With Love,
L.

First off breath a relief breath...finally you have someone telling you(what you already knew)that there is something truely wrong with your daughter(i know this feeling all to well but with a boy and i had this experience about 5years ago)
Now the hard part really starts find something that will work for her.I'm sure you'll have to face this choice...medicate or not.I'm sure you'll find that it will help your daughter and know with the right treatment options the doors will be opened wide for her.
My son has ADHD,OCD and bipolar...and once we got him on the right medication wow what a difference.And another thing make sure you keep your voice loud and strong when your child starts school...keep strong because it will be very trying on everyone involved(my son's IQ is off the charts.In 3rd grade he had an IQ of over 130)and it was hard to get something in place for him...but with a great start that you have now it'll help alot and don't let anyone tell you your child can't attend public schools because that's BS!!!
But this subject is something i could write a book on...but good luck and stay strong
J.

Dear H.,
There is an awesome support group that meets once a month at St Johns presbyterian church on york road in hatboro. As a matter of chance our meeting is tomorrow night wed the 12th of dec at 7pm and the speaker is a nurse practitioner from st.chris hosp developmental department
I will be there so I will keep my eye out for you if you would like to attend. Any questions feel free to write me and email. This group of folks has been wonderful for me because we are not sure if our youngest has aspergers or not same runaround but at the same time these folks have been an inspiration to me.
Check us out! It is free too.
J. @ ____@____.com

First of all, there is support around the area so don't be afraid to look for and use it. I know there's a school specifically for kids with autism spectrum disorder in New Jersey, near Princeton off US 1.

My brother-in-law was actually just diagnosed with this a few years ago and it was a relief for him to have a name to his "different" behaviors. He was glad to finally have some ways to help himself.

First, Aspberger's is the mildest form of Autism and most people with this form go on to lead pretty "normal" lives.

He has graduated both high school and college and is working full time. It took awhile to find the right fit for him and he still has many awkward social situations, but he has been where he is for a year now and is gaining confidence in his abilities.

Best of luck with your little one. Just do not despair because there is a lot of good help out there.

I know it can be a shock to receive a diagnosis like this (my son has a serious medical condition that took us completely by surprise) but knowing what you are dealing with allows you to move forward and adjust. I am sure you will receive responses from a lot of moms who can relate and give you good advice. You are not alone and there are many resources available.

I see that you live in NEPA. One service you may want to consider for you daughter is behavioral health services. I used to live in Pittston and worked for a children's behavioral health services agency in Wyoming called Milestones Community Healthcare. They are a division of Salisbury Behavioral Health and have a number of offices in eastern PA. They have an extensive autism program and even have a licensed academic school where they focus on individual needs. Here is their website. http://www.salisb.com/main.asp There are several other competing agencies in the area that you could look into as well. Look in the yellow pages under "children's behavioral health". If you have any trouble let me know.

If you choose to go this route, your daughter would be evaluated by a psychologist and could work with any number of specialists including a behavior specialist, mobile therapist or therapeutic staff support worker. If meds are needed she could also see a psychiatrist. These professionals would help your daughter with any behavioral difficulties she has. They can also help you learn about her condition and teach you how to work with her. As deemed appropriate she could receive services at home or at school. They even have a PA licensed academic school that you could inquire about. If I remember correctly all these services are free. All you have to do is sign up for Medical Assistance. Her qualifying for Medical Assistance should be based upon her diagnosis, not your income. Many of the parents we worked with belonged to a support group called S.A.F.E. - Supporting Autism and Families Everywhere. Here is their website. http://www.autismsafe.org/default.aspx

I saw a lot of success stories among the Asperger's clients I encountered and I am sure other moms will share their successes with you. Take things one day at a time and don't expect things to change overnight. But keep an open mind and an open heart. Be an advocate for your daughter and educate yourself about her condition, available resources and current treatment options. I wish you well and hope you will keep us posted.

My 9 year old boy has it too, plus ADHD. We heard about ADHD first; then the psych.mentioned the Aspergers. I'd never heard of it & then he told me of a website OASIS. I don't visit that site much, but to see it you'll know you're not alone.

I can't say I was overwhelmed with the diagnosis-just maybe relieved to know that there's a name for it AND maybe some medications for it. The hard part for us is that the meds we're giving him are expensive. It also sounds scary to take all these strange-sounding meds, but after a while of adjusting to find the right dosage it may just help.

My son is bright, too, but I think it has affected how he is socially. I'm sometimes looking for a local group with kids like mine to hang out with--that way I could be more assured that the parents and families would understand what we all go through.

my daughter is 3 and a half and was diagnosed with asperger's this summer. i, too, have been telling her dr's since she was about a year old that there was something different about her. it took her totally flipping out at the dr's office (because someone turned on the bathroom light and a fan came on with it...she hates that noise) before he referred us to a specialist who gave her the diagnosis. and even though i knew something was wrong, it was still really hard for me accept after the dr confirmed it. she also is incredibly intelligent and just tested at over 7 years old for her speech/language test. and she has just begun starting to sound some words out. but, she has a very difficult time with social skills (she would rather read a book, build a lego tower, or do a activity page in a coloring book). she also has a hard time talking with kids her own age because, truthfully, they don't understand much of what she talks about. she's 3 going on 30 and always seeks out much older kids who understand her language (she's definately the "little professor"). she is also extremely hyperactive and it is really hard to get her to focus on something, although she will sit and do dot to dot papers or mazes or puzzles for hours. my daughter started preschool this year, and actually goes to an "inclusive" preschool, which has typical children as well as children with special needs and all the teachers and teacher aides are specially trained. it's really great and i feel comfortable leaving her there. she has also acquired a behavior specialist who helped us put together a treatment plan and that has been amazing since now all of her caregivers are on the same page as far as dealing with her behaviors goes. hope this helps, and if you have any more questions, feel free to ask...

Hi, I understand where you are coming from. My daughter first starting having problems at the age of 5. She was "diagnosed with AD/HD, ODD, OCD". As the years went by, they tryed several meds on her. She is now 12 yrs old, In May, she was so out of control, I had to place her in a hospital for a month. I told them that I wanted an eval done for Aspergers. When she was released, she was diagnosed. To what my surprise after dealing with the others for so long. I have been reading and doing as much research as possible on this. I have found there are alot of mothers that have children with this. I know it is very hard. Just keep chatting with ppl that understand and keep researching it. Hope you are able to help her. Also, the school now needs to deal with her and her emotional problems. Good luck, P.

h

Hi H.,

My name is J. & my background is Occupational Therapy. I have not practiced OT in about 10 years (I have 2 girls 2 and a half & 15 months) but I did do an internship for children with social/behavioral problems. I don't know where you live but the place is called Collage in Newtown Square on Media Line Road. It is run by all OTs & it is an excellent program (and it is still there). Believe me, they had kids with worse problems such as pulling their own hair out etc...I do remember that kids with Asberger's do want social interaction & it is classified under the "umbrella" so to speak of Pervasive Developmental Disorder (PDD). But it is not the same as Autism, autistic children usually do not want the social interaction & do not make eye contact. I hope this helps. Good luck...there is alot of help out there for your little girl!

Hi H.,

I don't personally have experience with aspergers, but my best friend's 17 year old daughter was diagnosed with it last year. She has always been extremely intelligent and also a very pretty girl. However, she never like to be affectionate or receive normal loving affection from her Mom or Dad. She claims to dislike people in general and appears to be very odd and eccentric in her thoughts and behaviors. Hopefully, she will go on to college and be successful at whatever career she chooses. She will have to learn with the help of a psychologist to control and modify her attitude around her peers and bosses. My friend has dealt with alot of conflict with her this past year, especially since she got divorced from the girl's father. So that big life change really did a number on her behavior towards her mother. It is sad, but not hopeless. She is in treatment, and my friend understands that she needs to be handled differently than her siblings. Don't despair, just get proper counselling to help you deal with this disorder and find a support group for people that really understand your situation. Best of luck to you! - D. K.

Hi H.,
first let me say that my heart goes out to you and your daughter and husband... I have a beautiful son who turned 18 yrs old on Sunday... one of four pride and lights of my life.. I have had no experience with Asbergers Syndrome.. I honestly don't know what it even is, but I have had experience with part of what you are going thru. When my 18 yr old was little he had lots of social and disciplin problems in school and pre school and even at home... he is #3 of my four sons and eventually I would learn that each of them has some form or degree of ADHD. Noah, the one in particular that I am writing about was Very HYPER and I remember going to the school and the other kids saying, "you're Noah's mom right? He's bad... " and in the first grade his teacher would call me atleast 3 times a week.. "Noah crawled on his hands and knees to reading today..." "Noah did all his class work on the floor under his desk today..." "I had to put Noah's desk beside mine today..." I grew to hate the sound of his teachers voice... and he was actually a really good teacher. I know what it feels like to feel that the world is not seeing the beautiful child you see when you look at your own 'baby'...

first; get a binder and keep records of her school experiences and testing... get her IQ tested and keep a copy of everything in the binder.

second; search on the internet and learn everything you can about asbergers syndrom .. treatments and things you can do with diet or disciplin to help her deal better in society...

when she gets into 'regular school' you can talk to them and get her IEP (individual education plan) so that the school will do all it can to help you daughter succede in school.. (I'm in PA, I am not sure about other states and thier school laws or regs, but the have to have some kind of system)

ALSO; find a support group either in person or on the internet or both with parents who have children with the same problem as your daughter... that is very important.. it helps keep your sanity.

good luck and feel free to contact me again if you wish

S.

Well everyone has their problems, and differences. She may grow out of it. You definitely need to be understanding and firm with her. I am not aware of the exact extent of her problems. I know what she has, and I know that mental illness is never exact and they all are theories. It is your job as a mother, to use your judgement. Dont let anyone force you to do anything with your daughter that you are not comfortable with. The doctors like to use people as guinnea pigs and everything. Be careful what you get into with her. She needs a lot of love and understanding. If she has any kind of obsessions, it is important that you don't let her keep it up. Counciling would probably be good, if you can find a good councilor.
One problem is that the schools have no care for the children anymore, if they aren't perfect they want to throw them away. Try cyber school. Here is a link. www.k12.com It would be a shame if she didn't get a good education. Some of the smartest people have had some kind of mental troubles. If you let her school at home, you can be in charge. Then you can teach her how to behave around other children. In school the other kids bad behavior would just make her worse. Don't forget that alot of kids can be sneaky, she may be acting out because of other things she sees at school too, if she is really sensitive. I would suggest you enroll her in a cyber school and make sure she has play dates and stuff like that, where you will be there to supervise. Good luck and best wishes!

I am very sorry to hear about your troubles. I, too, have a daughter who is turning five this month who has issues. I am still trying to get a dianosis. I suggest you get some recent books from library on this and find some good websites. You will see that there is a lot you can do to work with this challenge, now that you know what it is. There are a lot of Moms working with the same issue, and you will learn a lot from them. There are a lot of kids with Asberger, and a lot of kids with other big issues. You will find help and support. Time is on your side.

Your child has the right to an education, which is protected by federal and state law. Check out: wrightslaw.com