Seeking Support for My Daughter

Hi

Have you taken her to CHOP for a full evaluation?? I would suggest that.
I have a 6 year old daughter with Asperger's syndrome.
Also, if you truly feel taht she has a need in school--you could get an advocate to help you with that.

Best of Luck,
D.

K.,

My son DOES have an Asperger's diagnosis. We got help from Dr. Reeder (psychologist) at Wellspan, Meadowlands, in York. Do you have an IEP for her? What are the specific issues you are dealing with right now? Feel free to email me.

L.

If your daughter doesn't exhibit any behavioral difficulties at school perhaps the BHRS and TSS services were successful in helping her overcome or control her issues. If she is exhibiting behavioral difficulties at home maybe she can receive TSS or MT (mobile therapy) services at home. You can ask your BHRS contact about that. If she is having academic difficulties I would push the school for an IEP if she doesn't already have one. If you think your daughter needs some serious help maybe look for a school in your area that focuses on kids with behavioral issues and/or autism. Milestones Behavioral Health started one in Wyoming, PA several years ago. It is called MAC - Milestones Achievement Center. They have added other locations in recent years. They used to be licensed by the PA dept of education so I assume they still are. I used to work for the BHRS division of Milestones and saw a lot of successes with the kids they treated. Here is a link to their informational brochure. http://www.macamerica.net/MACSchoolsBrochure.pdf Good luck to you.

Hi K.,

You have received some very thoughtful responses already. However, it is unclear from your request who has done the testing. It would be very helpful for your child to be seen at a center/clinic/hospital that specializes in cases of ADHD and also have specialists working specifically on autism. Has your child ever seen a developmental pediatrician or a neuropsychologist/psychologist for testing? It is often difficult to get in to see one, but it can be very helpful in making a good determination of what is going on. Evaluations through the school system can be helpful, but the expertise of school psychologists is based on "normal" children and it is often out of their range of specific expertise to assess complex children with developmental disabilities. The best advice is to keep looking. I would narrow the search to places of excellence. I am not sure where you live, but in Philly CHOP is your best resource, specifically asking for either the ADHD program (on their website) or a developmental pediatrician--your daughter will get a full evaluation either way. In the West CHP (or Children's Hospital of Pittsburgh and the Child Development Unit in particular) are your best options. If you are in the middle of the state Hershey Medical Center might be an option, but I am not familiar with their services. Hope this is helpful and good luck.

Hi K.,
My son, just turned 15, was origially diagnosed w/ adhd (age 7). He was diagnosed with a mild case of asperger's in middle school.

I have several questions for you.

#1 -- what are your daughter's symptoms?
#2 -- have you been to CHOP/ Seashore House?
#3 -- is your daughter on meds, and if so, what kind?
#4 -- how is she doing in school (academically/ socially)?
#5 -- is she in public or private school?

I have been through a lot, but my son is now doing a lot better.

A. D

Dear K., you are your childs best adcovate and need to keep pressing the school for support! They are not going to go the extra mile to help our kids if they dont need to. My daughter also has issues but so does everyone. My daughter sees a social worker once a month and this allows us as family go together or if she feels she needs to talk alone then thats an option too( she's 9). Also she sees a psychiatrist every 8wks because she takes the lowest dose of prozac possible(has to take at night,she wakes up ready for her day). She cannot focus in school, has anxiety and pulls her hair(trich).I have monthly meetings with the princ,teacher and anyone involved with my daughter-at my request. Im not going away and they know that by now.I also have a lawyer as backup! You may also want to get a school advocate. Dont feel helpless, you are just worried about your child and feel like you cant fix it. Also if you google behavior mod charts(all positive) there are some really good ones(& age appropriate) that you can give to the teachers to enforce at school, demand this, you have this right. also have one ____@____.com have this in our home and both my kids have one for there specific work on areas also includes some chores,they earn points every day for every item and are added up daily/by the end of the week they are added up for a prize.Behavior @ school is worth 5pts as is homework=5pts ect. under 100pts pick a dollar store prize out of a bag-- 101+pts pick a 5 dollar item-- 201+ pick a ten dollar item, a sticker for that day for a B or A test= 1 extra pt.each, this has worked magic! They know they have to earn these pts and they work really hard and feel good about themselves. Both my children are night and day, God made them that way, different, if they were robots like the school wants them to be they wouldnt be any fun! Keep your head up, express your feelings, I have yelled and cried at some of these meetings because of some of their ridiculous reasoning and not givig my child enough credit. My daughter has average grades, great ideas, beautiful green eyes and this is who she is and no one is going to fight for her but me. email me anytime ____@____.com good luck

I agree with many of the thoughful responses you've received. Get to children's in pgh or in philly asap...explain your urgency when you call...there are waiting lists...another option would be chiropractic and diet...some think it's nuts, but dr. gallagher at medical wellness assoc in jeannete (med. doctor and chiropractor) has seen awesome results with dietary changes and manipulations in the adhd and spectrum populations...if you are in pgh area, dr. scott faber at the children's institute can also diagnose and work with you on any diet needs...good luck!!!

If you have been trying to diagnose her with something since she was six, and no one can pin a label on her-be GLAD! If she has no behavior problem in school, she doesn't have a problem that will hold her back in life from the basic necessities-getting a job etc. People are so vastly different, many people are difficult at times. If she does have a disorder, especially adhd, than for her more importantly than for anyone, provide a very loving, very structured, disciplined environment. Enforce rules, set clear expectations, and shower her with attention whenever you can. People often don't discipline kids with adhd, thinking it's not their "fault" therefore they can't be disciplined, and it makes the problem ten times worse, because they need tons of structure and strong parents. Be sure her dad cooperates too. You didn't say what her issues are, so this is the best I can think of. She is unique and priceless, so try not to focus on finding something specificly wrong with her! Good luck!

i would say to take her to good shepherd in allentown, they helped to diagnose my brothers and we have always had good results with them.

best of luck.

My son has autism and he was diagnosed by the psychologist at Sharon Regional Health System's Connections Autism program. It is part of their Behavioral Health division and we have been very happy with their support and services. Perhaps you could schedule a developmental evaluation with one of the behavioral health psychologists and take it from there. This may be the beginning of a long journey -- make sure you ask for / find the support that you need to stay well, too. If you need help finding groups, post again and I'm sure there will be some of us who can help you find some others in your situation to connect with.

My best friend treats this without drugs!! She can tell you what's wrong and how to start correcting it! Her website is www.holisticfamilyhealthcarepc.com and she is very good. She can give you references and as long as you go in every so often she can answer questions and do updates on the phone and through email!! (for a fee of course). She specializes in children and thrives in helping them. I hope you'll call so she can help your daughter too!!

Hi,
My sister has been dealing with the same problem .Her daughter is around 20 years old and is still being properly diagnosed.If you would like my sister to contact you for support send me your e-mail and I will pass it on to her.She is not part of the Mamma source.and lives in Northern NJ.
Goodluck, L.

I don't always feel that a complete diagnosis is helpful unless there is biology involved that if cured would halt the problem (e.g. thyroid, diabetes etc.). You can keep fighting for a diagnosis for you child that covers all the behaviors but in the end what matter is the treatment your daughter recieves and the skills she is being taught to deal with her own behavior. Find someone who is willing to breakdown all her behaviors and help you and her deal with them effectively. A better diagnosis may come in time but your main priority is getting her to have a much joy and happiness in her life as is possible. You and her need coping skills more than a label.

You need to demand that she get full spectrum testing. If you do not know what she has as a dx, then its beyond time to get new doctors. You can't meet her needs for education and personal growth if you don't know how to handle the behaviors she is having. You stated that she doesn't have behavior problems at school, so what are the issues that she has? You said that she has Issue, just like that with a capitol I. Thats a pretty strong way to discuss your daughter.
I'd go to her Ped. and get new referals to new psych docs and a neurologist. Its super important that she see as many specialists as possible. You have been working on her progress for quite a few years to not have any progression of diagnosis. I have a child with quite a few dx's behind his name and I know that the evolution of "symptoms" and dx's are constantly unfolding and revealing new paths. I would also recommmend counceling for your daughter. And for you. The verbage that you used against her in this is quite disturbing. For example, "My daughter has Issues" and "I also have a 10 yr old daughter who is the completly different then her older sister". This seems like you are at you wits end with her and the situation is wearing on you. I would think getting a break once in a while and speaking to a professional about any resentment that you feel from dealing with this draining situation. Like I said earlier, I have a child with 5 dx's attached to his name. But the dx's don't make him who he is, they shape part of his behavior :)

I am also have been trying to get my one son tested corretely. THey have him full blown autsim at home and then adhd and clicial depressed at school. And are saying that he might hit 6 grade and stop learinng. Which they have no evidnce to back up what they had said to me.

Delepoment ped are get. But there is a waiting list for them. Almost a 2 year waiting list with some. And u don't want just an joe shome one.

This is one person that i have been in contact and he works with the schools. But he dosen;t belong to any school. Also here is a webiste that might help u, if u need any help fighting with the school. "www.elc-pa.org"
Dr. Jim Cianciulli, Ph.D., FABMP, ABSNP
Practice of Pediatric Counseling and Educational Neuropsychology
State Licensed & Board Certified

But feel free to contact me if u need any more info. I am fighting with the schools to get the help that my son needs to make sure that he has every chance as any other child has to grow and see life.

Hi K.,

Contact: www.dietzelbuter.com Hope this helps.

D.

I would suggest making an appointment with a developmental ped. & or a neurologist. This may help with diagnosing her then getting her the support that she deserves. Good luck to you.

Hello K.,
I too have a child with ADHD. I was also feeling there was something else going on. I just moved from Ca and did not get much help from the schools or teachers. There was this one agency that was helpful "Parents Helping Parents", I think the web address is PHP.org, not sure. My son is now 20 and is different. We have never given up on him and are still looking for the music as he "marches to a different beat". I was told once by a therapist (about his acting out with me) that it was hard for him to hold it together for the whole day and so he would release everything that was pent up because he knew it was safe to do so and that I would love him no matter what. With your daughter, you have to take into account that she is a teen ager and teen age girls are full of drama. (I have one of those too.)

Good luck
C.