Special Needs but Getting No Where!!!

Hi E., I have a 6 yr old son who recieved his diagnosis of high functioning autism 1 1/2 ago at age 4yrs 7mo. At the time, I had several of his teachers, therapists who were not convinced he fit the diagnosis...they're NOT experts in the area of diagnosis! I got him tested by a developmental pediatritian, Dr. Sedberry, in Walnut Creek. With this diagnosis, my son receives all of the services and therapies he needs--although, I still had to push for them! Another area of treatment that has made the biggest improvement in behavior and attention/focus is biomedical treatment. We're using vit/min/nutritional supplements and diet with HUGE positive results. Hope some of this is helpful.
J.
www.workingforwellness.biz
"Helping moms work from home!"

E.,

Bless you! I'm so sorry to hear of all you are having to deal with.

I honestly don't know if I know enough about your situation to even help, but I thought I would just throw something out there. I read this really great book awhile back called "Change your Brain, Change your Life," by Dr. Daniel Amen. It had several stories where children with severe behavioral problems were completely turned around by treating their brain correctly. He does really cutting-edge brain imaging in diagnoses and treatment. It was really interesting. Anyway, you didn't mention what kind of health problems your daughter has, so that may not help. But just in case it does... Good luck!

Take care!
M.

Hi my name is S. and my younget son had a behavioral problem also. I took him to the county behavioral health agency for help. We were able to no only get a diagnosis but counseling for myself and my family to deal with it. It was such a great help and now today he has had fewer episodes because of what our child therapist taught us.It took a lot of patience and some life changes in our routine but we did get through it and now I not only love my son but I like him to.I know that may sound harsh but there were times I did not like him when he was acting out I always loved him but it sure was tough to be around him during his episodes. He not only attacked kids but he would attack me and it was so heart breaking. I know how hard it is but there is help for you, just be dilagent and put your foot in the doors people try yo close on you. I can remember refusing to leave until someone saw me and you know what it worked.

Dear E.,

Can you get on the internet and try to get into a website for parents with children who have disabilities. There must be one out there, start with the autism website. I don't remember the title, but you can find it. I am sure that one of those parents have been in the same jungle that you are in now. Don't give up, and keep on going.

Go to the local County Health Dept and ask questions - go on the pediatrician web sites - British ones aren't as 'afraid' to put things on their sites.

Go to a Social Services Dept. and maybe they will have a list of local community resources - or to the local Chamber of Commerce. Sometimes they have lists of community resources because they want to entice families to live in their city.

Ask middle aged women, maybe they had a child with a problem like that or know someone who did.

I am so sorry that this society doesn't have an immediate place you can go and get some information. The whole health system is damaged in this country. Imagine a little child having to live in such an uncomfortable situation - and you know that she is confused and frustrated.

Hopefully it will get better as more people become aware that there is a way to help all of our citizens. ....and that the communities would be lots healthier and more civil to each other if we all had good health care. I am talking too much.
Good Luck, C. N

I don't have any advice to give but just want to say you sound like a really amazing mom, being a widow must have been a traumatic experience and with all that on your plate you are still going for an education! the only thing i can think of is just try another pediatritian til you find one that can give a diagnosis, my friend had a doctor who missed something that was affecting her health and the new doctor found it so i hope you find one that can help you!

HI E.,
I have a daughter I adopted who has numerous diagnosis. I don't know where you live but I would like to know if it is near Solano County? If so I have a list of resources that you may have trouble finding on the net. Please let me know and I will assist you in finding a resources in your area. I know what it is like to feel all alone and have no one to help. My husband and I were once there and now we have hope and a normal life. It wasn't always that way. I am also very familiar with the Bay Area as well. In any case, I am willing to contact our resources in the bay and Solano and see if they can assist us in finding out who can assist you.
S.

you didn't say what your daughters issues are but I have 3 children with special needs who all 3 I have put on reliv.It is a nutritional food supplement that is patented.It is amazing how the brain and body can heal itself through optimal nutrition.My son is bipolar and odd and we have been able to take him off of his zoloft and tenex since taking the reliv and he has alot less outburst.My daughters are much calmer and my 9 yr old is having alot less outburst and behavioral problems both at home and at school.I have a friend whos son has add who put him on reliv and she has been able to take him off of his ritalin my other friends son has aspergers and she also gives him reliv and says his outbursts have diminished.It is amazing what the body can do with optimal nutrition.this is not a curse or a quick fix but overtime it does help ALOT.Good luck with the meeting at your regional center, I wish you the best......themommmie

Your profile says you live in Fresno. I hear the regional center is really good out there. Contact them. Also look into a support group they will help you figure out how to push the school district. I would try and get an independent diagnosis. The school district is way to tied up with their money concerns to give you an independent result. If you have an HMO try going through them. Most HMO's have child mental health servies and try testing for ADD, CAPD, dyslexia. If she is frustrated because of a learning issue this could cause her to act out. Stay strong. I know it is hard.

I agree....you need to get the school to do it. They have too. As much as they try to discourge you put your foot down and demand the help.

Although it would be wonderful if the school would do the testing, it is getting close to the end of the year and you will run into a lot of brick walls. I have a 13 dd who is PPD-NOS and I highly recommend the Regional Center. No matter what avenue you take, be prepared to settle for nothing less then the best and don't depend on them to do all the work for you. Make sure that you follow up on all information. Also, when you do get the dx try and get your child on MediCal, it does not matter if your income is to high, they can base it on the child income. Once they get MediCal there is a whole new world for resources. My dd first case worker never told us about MediCal, because we did not qulify, it took her to retire and a new worker to do this for us and we have received so many services because of it.
Good luck to you and your family.

Have you seen a pediatric neurologist? My son has delays and we didn't know why until we went to the pediatric neurologist and did some testing (MRI and EEG) and that gave us clear answers as to why. I'm not sure who is good in your area but in my area there are 2 awesome pedi neurologists Dr Asaskir and Dr Chretien. We see Dr Chretien and love him.

Unfortunately, having a child with special needs often puts a huge strain on relationships within the family. Do you have a local parent resource center for special needs families? I'm pretty sure there is one near you but I'm drawing a blank on their name...oh I remember Parents Helping Parents
http://www.php.com/
I'm not sure if this is even near you but if you contact them they might be able to put you intouch withsomeone in your area.

Talking with other families has helped a lot for me and going to support group meeting too. Maybe having some behavior training for you and your child might help too. Is your child a regional client, if yes they should be able to help. An IEP is a great start provided your child is getting what he/she needs.

J.

Have you tried UCdavis Child psycology. I have a six year old who was diagnosed add/odd(attention deficent and oppositional difiant disorder) only diference is my son is not abusive to his peers but is very rude and hateful at home. I love him to death but it is hard sometimes. hope this give you some lead way. ps look up odd it will give you a check list of behavors to look for. thanks L.

You can't have an IEP without a diagnosis. Also, the regional center is obligated by law to provide assessments.

If neither the school or regional center are able to provide an adequate diagnosis, you'll need to take her to a private psychologist. Your insurance may cover it.

I would really pursue it with your regional center first.

I know it is a drive from Fresno, however Lucile Packard Children's Hospital has a "Development and Behavior" Unit that is very good. We have used them for our 4 year old who was a micropreemie. They have been a trememdous resource navigating through the IEP Process and have a team of legal advocates that can help you get the services that your child needs.

Hello E. C. Have you tried San Diego Regional Center? Their website is www.sdrc.org, they have a lot of resources! Also find out if your Daughter's school has a community resource liason. You can also call 211.

I hope this helps

God Bless

What aera do you live in? If you live in Orange County, CA I recommend that you go to TASK. they are in Anaheim and they are helpful with making government enties help mothers with helping children. I would would try and call them and see if that would help. I also would recommend taking your children to psychologist. /Trust me I undestand about being single.

What area do you live in? First, I would get her into see a Pediatric Neurologist. Get a medically diagnosis. If you are getting no where w/your school. Call the County Office of Education. Talk w/their Special Education Director. If you are in California, you may even want to contact your local Regional Center. Have them evaluate her. She may qualify for services. Once she gets services through them, she will have them for life as long as she resides in CA. They can also provide you with an Advocate to deal w/the school in getting services. Good luck. I know how hard raising a Special Needs child is. It puts a strain on the entire family. Hang in there. Feel free to e-mail me personally...... ____@____.com

~S.

DEMAND THAT THE SCHOOL TEST HER!!!!
Took me 11 yrs to have my boy diagnoised and Shriners Hospital in SLC told my to have the school perform the psychological tests that discovered that his Iq was 147. The school didn't want to but under law they had too and your school should have an on staff psychologist. Call the district office.