5 Year Old Son Possible Aspergers

My cousin was told that she had Aspergers and so my aunt and uncle took her to all kinds of specialists and they found out that she was miss diagonsed. If you can afford it I would get as many second and third opinions. They have found out that she just has a lot of other issues and one of them is not Aspergers. She has allergies, and food issues.

Dear S.,

I have dealt with a 13 year old who was finally diagnosed after years of misdiagnosis. He has Aspergers, OCD, ADHD and PDD. He is now 16 with the intelligence of about 10-11 year old. When we began he only had the intelligence of about a 5-6 year old. Strides have been made and will be for you as well, have hope.

Thank God for the early diagnosis and start researching. This is to let you know that you are not alone. There are many of us and we are coming out of our boxes to let others know. After much hard work I found some areas for help in my area. They are attached and will need you to contact them for help, ideas and support. Many more groups are appearing on the horizon which is a positive sign, (MPACT). These have help, support and some financial assistance. Take the time to do the paperwork, no matter how long or repetitive. Just remember to make copies of everything. Invest in a small home copier if need be.

Please just get on the internet or go to the library and start reading. Anything you read will be a big help in understanding your son. One book is ASPERGER SYNDROME AND SENSORY ISSUES: PRACTICAL SOLUTIONS TO MAKING SENSE OF THE WORLD by Brenda Smith Myles, Katherine Tapscott Cook, Nancy E. Miller, Louann Rinner and Lisa A Robbins. This book helps alot in understanding the sensory issues you may be facing and how your son views the world. Another good article about autism is THE GEEK SYNDROME. It is a cover story of TIME dated May 6, 2002. ASPERGER SYNDROME: A GUIDE FOR PARENTS AND PROFESSIONALS by Tony Attwood. Any of these or others are good.

S.S.I.
(Social Security Administration)
4240 S. Lee’s Summit Road
Independence, MO 64055
###-###-####
1-800-772-1213
www.socialsecurity.gov
(If eligible for S.S.I. request from them information on Food Stamps or Medicaid)

E.F.E.C.T.
(Encouraging Families with Exceptional Children Together)
EFECT
PO Box 2345
Lee’s Summit, MO 64063
###-###-####
www.efect.org
(Good support group, ask to help find Educational Advocate)

MO Dept. of Social Services
6801b E. Longview Rd.
Kansas City, MO 64134 (Longview Shopping Center)
(Food Stamps) ###-###-####
(Medicaid; MC+
First Guard; doctors & eye care
Cenpatico; mental health
Doral; dental) ###-###-####
(Free Legal Services) ###-###-####

K.C.R.C.
(Kansas City Regional Center)
821 E. Admiral Blvd.
Kansas City, MO 64106
###-###-####
(Application for therapy, respite care, range of service benefits)

JOSHUA CENTER
(Child and Family Development Center)
7611 State Line Road, Suite 142
Kansas City, MO 64114
Voice: ###-###-####
Fax: ###-###-####
Email: ____@____.com
or ____@____.com
www.joshuacenter.com

***Important***

· Get current copies of all school records to include any testing, evaluations, grades and IEP’s for each child.

· Get social security cards for everyone in family.

· Get current pay stubs x 6 months and last years tax forms.

· Get copies of all medical records to include any testing, evaluations, diagnosis and recommendations for each child.

· Get current letter from each doctor, therapist, psychiatrist or psychologist. Have letter state who they are, their diagnosis, how long seeing the child, any meds currently taking, what the child experiences, how they cope, and any direction for contact of the doctor for each child.

· Make a list of all difficulties each child has no matter how menial to you.

· Make a list of all medications, dosage amount, frequency of need and reason for each medication for each child.

· Keep records separate and up to date for each child.

· You may want to invest in a small file cabinet to keep these records in. As you start receiving any help you will have to fill out records on a weekly, monthly or yearly basis. These things will be needed again from time to time. I keep all pay stubs current and just file them with the tax forms at the years end.

REMEMBER:
* Any waiting list is worth the wait as this is a life long adventure you are on for this child.
* Any amount of help is worth the trouble as it is more than you have now.
* GOD LOVES YOU!!

Hi S. A,

My son has ADHD, Bi-Polar and Asperger's syndrome. He was not correctly diagnosed until last year and he is 14 years old. It's a good idea to see a psychiatrist as soon as you can. We spent the first 5 years seeing our PCP only to discover that he did not have the experience needed to manage the disabilities and medication. The first appointment with the psychiatrist was enlightening. We started using some medications that controlled his disabilities.

Here is a list of things I'd suggest you do or read about:
DOCUMENT EVERYTHING
START A NOTEBOOK (if you need info on the notebook you can email me at ____@____.com)
KEEP A LIST OF SYMPTONS AND REACTION TO ANY MEDICATION
FIND A SUPPORT GROUP FOR YOUR SON & YOU

It wasn't until my son was 12 that I attended a class with my support group and son. It wasn't easy to put all the pieces together after the fact (like when did he learn to walk, talk and interact with home life and outside the home. Now I won't attend a meeting or a doctor's appointment without my sons book. I have had to pull out documents from my sons notebook because it wasn't in his school/doc's files.

Once you have a complete and correct diagnosis for your son you'll be surprised at the changes in him after getting properly diagnosed and treated. It was like night and day with my son. Easier to teach, easier to get along, and easier for him to make (and keep) a new friendhip.

Good luck on your endeavor...I'd love to know how things have turned out. And, if you need a shoulder or an ear let me know and I'll make myself available.

W. Q

We spent the first year and a half trying to control his ADHD with vitamins and diet to no avail. They made little or no effect.

I agree with the other poster... Document everything. Also, I encourage you to request for your son's medical records to keep for yourself. The facility/Dr. office may charge a small fee, but it is worth it. During your journey, you will be asked for information that will be in his record. For example, the school will want to see for themselves that the child has Aspergers. At that point, you can give them a COPY of the consult record. Also, if you aren't happy with the doctor's, change. We had to change doctors several times until we found one that a) we were comfortable with and b) that really knew what the autistic spectrum was all about. Fortunately, healthcare professionals are becoming more aware of the disorder as time goes by. By all rights, my son should have been diagnosed way back when he was 5, but it wasn't until he was 11 that someone said "Gee, I think he has Aspergers." Above all....be persistant!

We are in the same process with one of my five year old twin girls Alexandra. She is very repetitive and has OCD issues. She has a hard time using eye contact and focusing on people when she is being talked to. She looks like she wants to play with other children but doesn't unless it is a baby. Her teacher at Headstart actually thought she had a hearing problem becasue she was always so loud but never responded to her name. She is a runner, running away from us at any and all opportunities. We recently started getting phone calls from the school about disruptive behavior and raging behavior then having no memory of doing these things. But she is extremely intelegent especially with memorization and grammer. We have been to the pediatrician twice now. She has referred us to a pediactric behavioral psychologist but it will be quite a few months before an appointment. He was the soonest. The others earliest appointments are not til April and May. The ped has out her on 3mg of Melatonin at night because she goes on and on for so long at night so that she was only getting at most 5 hours of sleep. That has worked wonders for her for sleep and it is all natural something that the body naturally produces. Another thing that we have done is taken pictures of an alarm clock at different times in the night and pictures of what activity that is to be done at that time. For example 7:30 is bath and 7:40 is snack and medicine and 7:50 is brush teeth and pick out a book and 8:00 is bedtime. This way there are no surprises and it helps with the transitions. We have also sent a photo album to school with her . This way when she starts acting out they can hopefully be able to counter act the behavior by distraction with something she enjoys. One other person that I know with 2 high functioning autistic boys has suggested going to the local school system to the special education department. They can get the ball rolling much quicker and that way if there is an issue the school is alredy preparred and can give suggestions and maybe get them into an early education program that will help deal with the issues and help with the transitions with school. I know what you are going through. Hang in there and I hope that some of my suggestions have helped you.

Hello
I have a book that I bought that was helpful with just giving me an idea about aspergers and other issues I will find that book and let you know the title If you go online and look you will find tons of info I will have to look up the site that I found most helpful I did find out our son did not have aspergers but other issues there are so many things that cross over each other I can understand why the doctor said wait but at the same time I would start digging and find out whatever you can about aspergers and other conditions because the sooner these things are addressed the sooner you can understand your son and why he does what he does. I found it all very interesting and also found that our son grew out of alot of his issues but does have other issues. For starters make a list from birth to now of anything you have found different or are concerned about with your son this list will come in very handy with any doctors appointments you attend it is way to hard when you are standing in front of someone to remember everything. I even wrote down things about my pregnancy, delivery and how my son was at birth. No bit of information is to small It can all help for a complete and correct diagnoses
I will let you know when I find that book and remember there are those special awesome things about your son that make him special in every way.

Please read the book by Jenny McCarthy, Louder Than Words: A Mother's Journey in Healing Autism. This describes how she has helped her son manage and almost cure his autism. As a parent I would look into your son's diet first and foremost and any environmental indicators that could be affecting him, before even putting him on any medication or seeing a psychitrist. In 1992, when my first son was born, autism was 1 in 10,000 children. In 1999, it was 1 in 3000 children. Now it is 1 in 150 children and 1 in 94 boys. I spoke to my peditrician and they are doing studies that the MMR shot given at age 1 could be the contributor, which CDC is looking into. My 2 month old son's doctor said to hold off until he was at least 3 years old. I am sorry it is too late now for that information for your son, but please look into that book.

I am a sister to a man that more than likely has Aspergers (that was not something that was really diagonsised 30 years ago). So I don't know what it is like having a child with it, but I do know what it is like growing up w/ a brother w/ it. One thing, don't let this get you down!! My brother is and has lived a good life and he is happy! He is married now and holds a job. He just needs more support from us (his family) for things. Like when he was looking for a job, he needed help knowing where to look. If there is a problem w/ the car or house, we help make sure it is fixed properly and he doesn't get taken advantage of. My parents were really good to make sure that my brother was "socalized". We have a large family and he had to learn how to interact w/ us. Yes he is quirky, and very quiet. He usually doesn't contribute much to a conversation, but does like to be there to listen. He really exceled in music and math, so my parents let him focus on that, but they still had him try other things so he would learn (like swimming and a year in tee ball). He has that thing w/ voice control too....it is very common. But he is better about it as an adult, but sometimes he has to be reminded. It also took him a long time to learn not to encroch on personal space. And he is very literal, and has a hard time w/ word problems. All you can do is just recongnize what he has a hard time w/ and help him learn techniques to get him through. There are a couple of good books that I have read recently that you might find interesting. One is call "Born on a Blue Day" by Daniel Tammet. Daniel has Aspergers and is also a math syvant. He is the first syvant EVER that has been able to explain his thought process. In his book he goes into great detail about what it is like living w/ Aspergers. There are also many books by a woman named Temple Grandin. She has austism but is a pioneer in the field of animal behvior. She has a lot of books out about what it is like to be autisic. There is also a parenting book called "Quirky Kids" by Perry Klass and Eillen Costello.
Hope this all helps. Feel free to contact me directly if you want to talk more.

Hi. My son is 5 and has recently been diagnosed with Sensory Integration Disorder. His behavior sometimes looks like he is autistic, but his problem lies in his nervous system. He just doesn't process information through his senses properly, and can respond with "out of sync" behaviors. (We've also had problems with him in school.) We get therapy through Sensational Kids in OKC, and I'm alrady seeing good results. I'm happy to e-mail if you want more info.

My daughter is affected with Autism. We were able to get alot of info from the neurologist as well as behavioral pediatrician. The wait time to see the neurologist was much quicker as well. There are also many resources avaliable thru the school district, such as behavior specialists. Best of luck to you!

Sounds like it to me.My son has Aspergers.go to Oasis.org(I believe).The oasis guide to Aspergers is a great book.Age 5 isn't too early to diagnos.I would get another doctor.Go to the library and look online.They have alot of information.The earlier you find out the earlier you can help him.Btw,if he does changing diet,herbs and finding appropriate toys,books ect... might benefit him.Just things that helped us.Find a good support group.
Blessings,
M.