Parents of Children with ADHD Support Group

This community is designed as an open forum where the parents and guardians of children with ADHD (Attention-deficit/hyperactivity disorder) can give and receive support, as well as discuss ideas, techniques, concerns, surprises, and challenges they may face with their children.

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chemistz 11/16/2009

Hi,

I read quite a few of the posts here and decided I wanted to join and be able to talk with some of you. I feel so alone sometimes like I am the only one who has a "bad" child. My son's problems started when he was almost 3. I got calls from the daycare or little notes from them almost every day. Then he was "kicked out". I was dumbstruck by this. Then he got "kicked out" of the second daycare and I knew my life was never going to be the same.

I cried practically every day. We took Alex to a psychologist and she said he was FINE but just had some issues with us moving to a new place. Boy, was she wrong. We finally ended up at The Montessori School in Chattanooga, TN. He was in their preschool class. They called every day too but they were at least willing to work with us. First we changed his diet and sleep habits but it was not enough. They recommended a behavioral pediatrician. He was wonderful.

We went through a pretty rigorous evaluation - the whole family. Then Alex was diagnosed with ADHD and Bipolar disorder or as the doctor calls it "Mood Disregulation". He started on Adderall and Risperdal - very small doses. I could see a difference almost immediately. The child who could barely sit still long enough to do a small puzzle could then sit still for almost an hour and work a much bigger puzzle. He started kindergarten at The Montessori School when he was only 4 because they told us he was ready.

Unfortunately, he wasn't socially ready. That year was very hard. I felt like the teacher hated Alex. We struggled every day. Then he graduated from kindergarten. He started 1st grade at 5 with a phenomenal teacher. We had our problems but overall it was a good year. Then my world came crashing down again. I was diagnosed with ovarian cancer and the medical bills came flooding in. We had to make an incredibly tough decision. We could no longer afford the $750/month for The Montessori School.

In August of this year Alex started the second grade at 6 in public school. It has been a nightmare. We have pushed, yelled, cried and everything in between. His medicine has been changed several times. I hate both his teachers - he has two - they "job share". We have started the proceedings for the Federal 504 program and an IEP. It takes up to 60 days for the evaluation to come back. In the meantime, Alex was suspended for 3 days last week for pinching another child. I am still in shock over that one. He is such a sweet, loving child at home. We see the hyperactivity but we can deal with it. His teachers are hopeless. I am at my wits end and I need all the great advice you can give me.

Thanks,
Wendy

deleted_user 11/16/2009

I feel for you, I really do. We are struggling with our son and can't seem to get any support from his school. We adopted Taliesin and know he was born to a woman who did not take care of herself during pregnancy. Taliesin does a lot of acting out, hitting other kids, using foul language and is not really learning anything at all in kindergarten.

I don't have any answers for you. I wish I did. We are hoping to start him on meds this week and hopefully that will calm him down. We also have an appointment with a child psychiatrist next Monday.

As for the school, their answer is "there isn't anything we can do" even though we have an IEP (which is worthless IMO). The refuse to provide any services whatsoever to my son. We are so frustrated right now.

I'm so sorry you are dealing with cancer at the same time you are trying to get your son help. It just adds to the stress level.

Many hugs. I wish I could be more helpful.

-Karen

deleted_user 11/17/2009

Goodness!! First of all Im sending you a hug because I think you need one. Secondly, you have come to the right place. What I have found from this site is people who just "know" what its like and I take a massive amount of comfort from knowing that Im not alone in all of this. Its worth its weight in gold, along with the sharing of ideas. Like you, I have had issues with schooling with my son, he has been excluded twice from different schools and is currently in an assessment centre. He has a diagnosis of ADHD now so we are waiting to see what school best suits his needs. What I have found with schooling is that its very hit and miss. There are not enough dynamic and understanding teachers. Im from the UK and I dont know whether you have this option where you are but I have a Social Worker. I called them because I knew they could open up doors to me that I couldnt as a parent. They are a great support and can push for things the same as me. Having their backing means that sometimes people sit up and listen. I also have accept to someone from a group called Parent Partnership. They support parents of children with special needs with any issues around education. Again, I dont know whether you have this option. What works for me is knowing as much as I can about the condition and pulling in any agencies that I think can support me. For the record, I also think thats its time the "professionals" started listening to parents, we are the experts in my opinion, we are the ones who live it 24 hours a day so what we say is extremely valuable.
I dont know whether any of this is any help to you or not but by posting, your not on your own anymore :-) Jo

chemistz 11/17/2009

Thanks so much for your support. It feels great to just talk to someone. Some days are just so hard. I love my son and I think he is the most wonderful child but the school feels like he is a HUGE problem. I am planning on contacting the parent advocate today to see if that will help. HarrysMum - It sounds like you guys have a lot more options than we do here in the States but I am going to do some more research just in case. Again, thanks so much for your replies.

deleted_user 11/18/2009

To be honest, most of the parents here at Daily Strength probably thought you were describing them! All of us know exactly how you feel. My daughter has not been in private school but we have the same problem. We are going through the 'intervention' program finally at 5th grade. My daughter has been diagnosed with ADHD and on medications for the past 3 years. Her teacher at the time has insisted that she needed medication but you know, EVERY SINGLE teacher that she has had since Kindergarten has COMPLAINED, WHINED and BITCHED about how BAD she is. She had one teacher in 3rd grade that really tried to help her along in school but thats it. Seems this year, they finally want to help with their 'intervention'; yet this takes up to 16 weeks and by then she WILL FAIL THE 5TH GRADE. I have her going to a psychiatrist, this Friday will be her 2nd visit and I am hoping that we will get a game plan going. I am very sick and tired of the teachers at school though. If I could afford to HOME SCHOOL, I would certainly do that. Unfortunately, it only makes our children worse when they are around these teachers. I have a teacher as a friend and neighbor (she taught my oldest daughter) and she has given me the run down on my PARENTAL RIGHTS so I plan to take her up on it. I am going to DEMAND that the school district help my child NOW not in 16 weeks. I don't think many parents know what the schools CAN DO but WONT DO. You have started the process with the 504 Program. Now, step it up a bit by writing a letter to the Guidance Counselor of the school with a copy being given to each teacher and principal. If the letter doesn't get you a quick response then address a letter to the School Superintendant and copy it back to the original people. Make sure to ask them to take IMMEDIATE ACTION in helping your child; not 16 weeks like in my case. You have a right to ask for what we call in Florida an INCLUSION TEACHER. They are for small classes and special needs children. My neighbor is one. You may ask the schools to give your child a lighter workload, longer testing time, etc. Make them do it!!! I plan on it now that I have this new advice. I just found out last Sunday so by Friday, the school will have my letter. Good Luck to you, and I am sorry but I am very very angry with the school system too; most of us are.

chemistz 11/18/2009

anitre1214 - I am so with you! I wrote a very long and detailed letter and sent it to the Director of Special Education for the County and copied it to everyone I could think of. That is why he is now undergoing an evaluation bu the county psychologist. That can take up to 60 days and it has already been 30 or more. I harass the teachers on a daily basis and my husband harasses the principal. They have made some accomodations but they just won't be CONSISTENT. I could rant for days on this but I am going to try to control myself. Thanks for the advice though!!!!!

deleted_user 11/19/2009

I think I have been ranting about the school's teachers for the past 2 weeks. I am so over the fact that they DO NOT RESPOND TO MY NOTES, etc. I just plain PISSES ME OFF. Sorry. I try not to let my daughter hear me, but sometimes I just can't control myself. Good job at sending that letter!!! You do have a right to demand that changes be made IMMEDIATELY at your son's school. YOU DO NOT HAVE TO WAIT THE 60 days. At least that is what my neighbor has told me. Go for it.............keep on those teachers and don't let up until you get what you want!!!!!!

deleted_user 12/14/2009

I know how you feel. My son was diagnosed with ADHD last year. I knew he had it because my husband has it, but did not want to face the truth. I did not begin to give him meds until the end of the school year last year. Let me tell you I saw a huge difference, but it will affect him in the long run and thats what I dont like. He is in 2nd grade right now and stuggling making friends and doing his work in class, any suggestions?????. Last year he got punished for throwing a rock to a little rock and hitting her on the forehead, but the school failed to mention that she tossed the rock first and hit his back. Sorry to say the schools label them once they are aware they have ADHD. His teacher last year did not help, she gave up on him and would not help me. I have cried so many times and feel helpless. I feel like I'm loosing control of him. This year his teacher is great, always in communication with us and is very patient with my boy. I have to stay on top of him and the school to see what is going on and make sure that he does not get punished just because he is and "out of control" child and that his behavior in school good. Whats funny is that at home he does not cause any problems. I am looking for the best way to help him.. If anybody has any suggestions please let me know... I'm glad this support group is available. Im here to talk if anybody needs it...

chemistz 12/15/2009

Lizful - the struggle to make friends is one of the hardest of all. It breaks my heart. He is an only child and he yearns for friends at school. His behavior though has made the other children either afraid of him, or they think he is weird or worst is the "normal" mean kids like to push his buttons to get him in trouble and then laugh at him. So far, it has taken many adjustments of medication to get him even where he is. It is such an emotional roller coaster. 4 days last week were marked as "GREAT DAY" by the teacher and we were all so happy. Then yesterday he got in trouble 4 different times and I had a HUGE note about it and my son was depressed as well. I know what you mean about the rock throwing incident as well. My son seems to be the only one they look to whne ANYTHING happens because you are right they have labeled him. We wrote a letter to the Director of Special Education for our county requesting that he be evaluated for Federal 504 disability plan and an IEP (Individual Education Plan). ADHD is one of the conditions listed as a learning disability. They have been evaluating him and testing him and observing him for 60 days. Tomorrow - 12/16 we finally have a meeting scheduled to discuss the findings and what lies ahead for us. If he is approved for this, it will last the rest of his school career. I will update my post to let everyone know what was said. Lizful - you should look into doing the same thing. It will protect your son from discriminatory behavior. E-mail me anytime.

rsnation 12/21/2009

Having fought, ranted, raved, and screamed I do want to let people know that a good IEP is possible. Unfortunately I actually had to hire an advocate to help get it done. It's illegal to refuse to do an eval once requested in writing by the parents. It's illegal not to have it completed within 60 business days. It's illegal to not follow an IEP once it's in place. Amazing, really, how much is illegal.

Of course, having said that it doesn't mean the school will be in compliance but if they aren't you can keep bumping it up a notch. They weren't following my son's IEP and I threatened legal action. All of a sudden they were in compliance. It's exhausting and I dropped the ball more times than I like to admit but as parents we really do have rights.

Having said that I really, really do know that one more thing on my plate, having to go through the process of educating myself (I knew next to nothing) was a long, hard haul and something I simply couldn't do a lot of the time. I think I missed the boat almost completely with my oldest son but I finally had it somewhat figured out for my youngest.

deleted_user 12/21/2009

Lots of schools seem too quick off the mark to label our ADHD kids "bad". My boy's primary school didn't seem to handle him very well and always complained about his behaviour. He was supposed to get one-to-one support for part of the day (paid for by education authority) but that only lasted a while and he was in small group support, which school said was part of it. No it isn't! One-to-0ne should BE one-to-one.
He'd get excluded too for hitting another kid, but nothing said about this other kid doing something first!
He's at high school, which is more strict, and despite some issues with him, he is generally getting good reports on his work. His new school seem more aware of how to handle him and he does get a support teacher part time every day.
I am so sorry to hear of your cancer, you are very brave to cope with all of this. I don't know how you can keep going with everything going on, I know I get days when everything seems too much and I want it all to end.
Good luck to you and I hope you get things sorted out soon.
Dolly xx

chemistz 01/04/2010

rsnation and Dollyface - thanks for your replies. I am back at work after 16 blissful days off for Christmas break. Two days before break we had a meeting with my son's school and were told that he did meet the eligibility requirements for an IEP - YEAH!! We stayed several hours and drew one up with the help of the special education teachers.

I am optimistic about his return to school on Wednesday. On the one hand it will be difficult because of the long break but I think they now understand that they will have to be prepared for that. I am not so scared and worried that he will be suspended for every little thing. There is no guarantee of course but I just feel better having the IEP in place. Believe me with my health and financial woes I have plenty to worry about already. Several of you have mentioned my cancer. I want to clarify that at this point I am cancer-free. In December of 2007 I went to the emergency room because my leg hurt like In have pulled a muscle very badly. They quickly discovered blood clots in both my leg and in my lungs. They started me on a heparin drip in ICU and several hours later shut off that drip when they realized I was bleeding internally. After many tests I was told that I had a very large ovarian tumor and they had to operate immediately or I was going to die. So into surgery I went. Many hours later I emerged with no female organs and also less 1 5-pound cancerous ovarian tumor. It burst as they were removing it. I spent 12 days in the hospital thanking God for watching over me. I took 1 shot of Innohep per day every day (even Saturday and Sunday) for the next 6 months. Then my insurance maxed out and I was able to fill a scrip for shots that I could give myself - twice a day for the next 9 months after that. On Good Friday of 2009 I was released from treatment of the blood clots. I still go every 3 months to my gynecologist/oncologist to be examined and get bloodwork to see if any cancerous tumors have returned. I believe I have to do that for the next 3 years. In the meantime, Menopause at 40 really SUCKS!!

Okay, on a lighter note, I really appreciate all the support from this group. I hope everyone had a great Christmas and is looking forward to 2010!!!!

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