Any Tips on Asperger's

Updated on October 23, 2008
K.F. asks from APO, AE
10 answers

My daughter was diagnosed with Asperger's last year. That was kinda it, the Dr.s were like yeah she has it. So even though I have I asked and "googled" I am kinda left with, What do I do now? I haven't meet anyone else who has a child with Asperger's so I am looking now for advice or just someone to say Hey I've been there and it will be ok. Thanks for listening!

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So What Happened?

I just want to say say Thank You to everyone for writing me. I helps so much to have encouraging words and advice. I do have her first appointment with the child psycologist tomorrow so that should be fun! The school does work with her alot, but not really on the social skills and I think that is where she needs the help the most. I do have experience with special needs(my younger brother is severly disabled) it is just differnt when it is your own baby. Hopefully I will get some more info when we go to this appoinment tomorrow. Thank you again for all of your support!!!!----
Tuesday-- We had an appoinment with a very Dr. and he answered many of my questions and is refering us for some things so I am feeling alot better! I just wanted to say Thank you again to everyone for your advice and support, it is so nice to know that there are people who care. Thank You!!!

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K.P.

answers from Stationed Overseas on

My husband's cousin has 2 boys with Asperger's and she actually helps out in the schools with children that have the same thing. She is very knolwegable on this condition. I believe she has created a website about it. I will find out ffrom my husband when he gets home and give you the website if she did if not I will get her e-mail address and you can e-mail her and ask her all the questions you would like.

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L.O.

answers from Fayetteville on

Kirsten
I am a grandmother raising an asperger child all his life. He is 12. My advice is read, read, read. Find a Dr./ counselor that you and your child really "click" with. Use the internet to learn as much as you can. Get involved with other Asperger mothers and children. My little boy has a aspie friend and they were like two peas in a pod instantly!!!If your child is in public school make sure they are aware and is given an IEP. I have been homeschooling and just now have decided to try public school. It has been a tough decision but the counties are required to give our children everything they need inorder to get a good education. A young boy in my church has aspergers and he graduated last spring as Valedictorian in his class and is now on a full scholarship at Duke Univ!!! Dont give up! Keep in touch.
L.

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D.H.

answers from Stationed Overseas on

My son is four and we've been told from a few doctors that he probably has it. I'm big on doing things while the brain is still being formed. So, I've been working on doing things that help with his triggers. He does better with a really good night's sleep, so I've been basically setting up his room like a boy's spa. I let him have 30 mins of 'calm down' time, which usually is watching his favorite cartoon before bed. I set the timer and let him know to go to sleep when it's over. I also have a white noise machine that plays rain drops or something. I read that nightlights mess with biological clocks, so I turn those off once he's out.
He just recently started piano lessons. He's not a genius in that respect, but it helps with his anxiety and regulating his emotions. It also is good for getting him to 'act like a big boy' since only 'big boys' get piano lessons. We've also ordered a down mattress pad for his bed.
The craziest thing that we just found out about is bubble gum. He sticks everything in his mouth. We haven't trimmed his nails in over a year. So, someone suggested bubble gum. It not only helps with him chewing like a puppy, but he concentrates better, and whines less. Some how it flips a switch in his head.

Hope that helps.

~Cheryl

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N.S.

answers from Stationed Overseas on

Hi Kristen,

I don't know anyone with this diagnosis, but I would like to suggest that you insist on being referred to a German Pediatrician or Specialist. If the diagnosis was from an American MTF, then I must insist. Not that the Doctors there are not well trained, etc...but they are in no position to offer you specialized care, because of their primary mission and the Pediatrics dept is just overloaded, since we have really seen a baby boom since about 2003.

I take my 2 year old to a German Pediatrician exclusively. Call Tricare and they can give you the website where you can search for local providers that speak English. You can then Tell (Not ask) your american Pediatrician or Primary Care Manager to refer you off base, due to your extreme concerns regarding your child's diagnosis.

I have read that the faster you start getting your child help for those type issues the better she will learn to adapt and function. So...I do not want to sound paraniod, I just have experience with the U.S. Healthcare, and not getting treatment fast enough, and it ending up causing WORSE problems later.

My horror stories include being seen at the ER for severe abdominal pain, and then being told I was pregnant and to go home and rest-and return the next week if I still felt badly. My instinct told me to call a German Doctor and get seen right away....I did that, and the doctor told me to come in ASAP--she saw me immediately based on my symptoms, and performed a THOROUGH exam (Which the ER Doc did not do), and learned that I had an Ectopic Pregnancy that was about to burst my tube. I was admitted to the German hospital 1 hour later, and had surgery the same night. The Surgeon said that I could have died had the tube burst..and that best case I could have lost the tube altogether (And I want more kids).

Another story for you: My daughter kept getting these "rashes" on her genitals. I took her into the Pediatrics dept about 4 times over about 6 months....and they would prescribe salves, and sometimes medication, etc....but always called it a "VIRAL" type rash, etc....So, the last time she got this, it ended up as boil-like sores all over her genitals, and she was miserable....I called Tricare and explained my experiences with the American Pediatrics Dept., and they referred us off post right away. The German Pediatrician I saw told me that she was very concerned...she did a Culture and Blood work the same day (Which the American Docs never did). She went ahead and prescribed antibiotics and antibiotic cream. When the blood work came back, it was a severe STAPH infection....The culture took a bit longer-but showed that it was NOT resistant, so thankfully, it was not the dreaded MRSA that most antibiotics cannot cure.

I look back on it all now and I am very concerned that my 2 year old has had more antibiotics that I ever have in my life...and all because the American Docs. are too busy to dedicate the time to really diagnose problems effectively. The other problem is that since they are so busy, we saw about 3 different Docs in Pediatrics alone--making it impossible for them to track her past issues, etc...and follow her health. Again, I am NOT blaming those doctors--they have a tremendous strain with all the soldiers coming through there--and on top of that--all their spouses and children, who they said seem to be baby-booming again :) These American Docs are trying their best to deal with their workload, and some of them are the best I have ever met...but when it comes to your own health-and especially the health of your children, you really should find the "right" doctor..even if it means insisting on an off base referral. I feel better now necause my daughter has 1 doctor who knows all about her medical past, she tracks it all in her baby health book, and is always readily available to see her if my instinct tells me something is wrong.

Off base docs will usually process the Tricare claim for you and then whatever is not paid by them will come to you to be paid--as an Active Duty family member actually, you will usually pay next to nothing...

I hope this helps...as you can tell, I am rather emotional about healthcare over here for us Americans---so, take it from me...if your GUT tells you something needs to be done, you are RIGHT. Insist on a referral.

N. in Kaiserslautern

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M.V.

answers from Stationed Overseas on

Hello my name is M. V I have a child with PDD is just another form of Autism. She was diagnosed at age 10. I know exactly what you are going thru. It is NOT the end of the world. I know it feels like you are all alone. I am sorry your Doctor didn't give you any support. But there is help out there. First I would go your childs school they should be able to give you more help and information. With help from the school my daughter has overcome sooo much. I hope this helps you if you have any questions please let me know. I will gladly help you
God Bless
M. v

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C.S.

answers from Stationed Overseas on

Hi K.,

In 1999 when we lived in San Antonio. I cared for a child who was diagnosed with Asperger. He was in my day care and I cared for him 24/7 when his single mom was TDY for weeks at a time. He had a speech therapist who come to my home two days a week for one hour to work with him on communication through sign language, pictures and a few words. He understood most everything, but kept to himself unless I gently encouraged him to join. I used sign language regularly with him and pictures to let him know what to expect next. This type of communication was very effective. As I am sure you read Asperger is very individualized like the shades of paint that are available in a home store. His mom and I had long discussion about staying positive with him and keeping him involved in activities not allowing him to spend too much time focusing on looking at the ceiling fan or rubbing the corners of pillows or combs which he preferred to do over other things. We were able to encourage him to join in most of the activities as long as he had something to hold in which he could rub his finger on, our solution was a small comb that he could carry in his pocket. I am happy to say with keeping him involved in activities, communicating with him through sign and language along with pictures he was able to attend a regular public school and make outstanding grades. He prefers not to communicate too much with others the last time I talked to his mom, but he is doing better than they ever said he would.

In 1999, Texas had wonderful resources to help parents who have children diagnosed with special needs. When you get to Texas get in contact of DHS to be directed in the right direction.

In 2002, I carried for another boy who was showing signs of Asperger, but his parents were in denial and didn’t want to know. He didn’t want to do anything except play with the tassels on my pillow. I went to the Hancocks Fabrics and purchased him several tassels to carry with him then encouraged him to participate in the activities. He showed some improvement during the six months I cared for him, I pulled out my pictures again and started teaching him simple sign language along with talking to him. I was very frustrated because I knew he needed his parents to realize he needed assistance to be able to live life to the fullest.

I know this is not much, but I hope it helps. I would also get involved in a support group O.A.S.I.S. (Online Asperger Syndrome Information and Support They have several groups through out Texas, one being in San Antonio, which I would imagine you will be refer to Brooks Army/Air Force Hospital or maybe Wilford Hall on Lackland AB. See the website below

http://www.udel.edu/bkirby/asperger/suppTX.html

a my space page a parent has made to help others

http://profile.myspace.com/index.cfm?fuseaction=user.view...

This site has a lot of links to other sites that might help you speak to other parents.
http://www.fhautism.com/links_usgroups.htm

Wishing you the best,

C. S.

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L.B.

answers from Stationed Overseas on

Hi there!!

It will be okay, especially if you can get early intervention. My son was diagnosed at 4 and while I felt angry and despondent, with time, persistence and hope, it got a lot better. There is a very good book, that I found the best of all of them, called -the parents guide to high functioning autism and asperger's syndrome. You have to get help and get help NOW! Early treatments and intervention is the KEY to helping your daughter. Do you have EDIS at Baumholder? If so, hit them up for everything they have. Look into to EFP program. They are SUPPOSE to help you. Make sure you have the diagnosis on record. I was hesitant to get one, because I didn't want my son to be "labeled", BUT it is the only way to get services, so I didn't care what they called it, they just needed to call it something so I could get help. I don't know your resources in Germany, but you have to advocate for your daughter. No one is going to offer help, so school yourself and going in basically expecting that they are going to give you want you want. I am not sure what specific symptoms you daughter has, but you should be working on social skills training, OT, speech therapy. I would work with EDIS and often you can go to the Elementary school for therapy services. AGain, all I can say is start NOW. Once she's enrolls in school, march right into the school with your diagnosis and say you need evaluations for an IEP or 504 plan, depending on your needs. You will need to basically DEMAND the services and you are entitled to them, don't be afraid to ask. Good Luck.

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S.D.

answers from Stationed Overseas on

If you are in the military and they havent done anything for you, you need to bring it to the higher ups. Both my boys have been diagnosed with autism, since then I have been in contact with every one at my boys school, I let my husbands chain of command know, and I basically found out everything I needed to know about it. But majority of the time you need to learn everything about it, and what you can do about it. I bought alot of books on amazon about the syndrome. I know they also have books on asperger's aswell. I know from general experience that it is not easy, and it takes a really strong woman to handle this situation, but like alot of my friends tell me, god knows what you can handle, and if you couldnt handle it, god will find doors and windows to open to help you along the way. I dont wanna preach, but when a good friend of mine told me this "God knew what he was doing" it really did make me feel much stronger, even thou I was on the verge of tears. I really hope something I said helped you in some way.

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N.D.

answers from Stationed Overseas on

Hello, K., I dpn't much about asperger's, however I work in The Family Advocacy Program in the Army Community Service Center in Schweinfurt. My immediate supervisor has asperger's and so does my co-worker's son. I can ask them for tips for you. Keep in touch with me and I'll do what I can for you. We are our final months here and PCS'ed here from Ft. Hood, you should get lot of help there. I just don't think Europe, especially Germany is the place for special needs kids. I can tell you this. Had my co-worker and supervisor not told me, I would have never known. I ma always willing to help anyone I can. Be blessed and safe travels to you and your family.

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B.O.

answers from Stationed Overseas on

HI K.. It's so funny that I should be reading this. I almost deleted the email without reading it and now I'm glad that I did. I was stationed in Baumholder back in 2002 and we went to Ft. Hood in 2004, and now we are back here in Germany in Volgeweh. I happen to be an Occupational Therapist that works with children with disabilities/delays. I am currently a SAHM. Anyway, How old is your daughter? I would advise you to contact EDIS if you havent already. I can give you some direction on services if you need it, also some direction in Ft. Hood. Just let me know....Also, I know a teacher here whose son has Aspergers (he is a teenager now) I can try to contact her and see if you can talk with her as well.

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