Want your input for Roundtable

[charliegirl]

When we go to NYC, if I understand it right we are going to be asked what information we would have loved to have that would have made it easier to navigate the ADHD world when our kids were originally diagnosed.

I think it would be great if people who aren't going would let us know what you would tell them if you were there. We can print this out and give it to them so they have your views also.

This is your chance to make a difference! What would you have liked to know or been able to find out easily when your child was first diagnosed? Do you have an experience or anything you feel would help them understand what we and our kids go through?

[puzzled]

I wish that I had known that there were meds that could be given to counteract the appetite issues that accompany stimulant medications. I lost countless hours of sleep over 9 months time watching Chase lose 10 percent or more of his body weight, not knowing that there were options. I didn't find out until I found on a message board, then I researched and called the doctor myself to request it. You would think that a parent would be told....

Also I wish I would have known about 504 plans, and all of the different modifications that can be made to make school a little easier to handle. Again, I found out on message boards. Heck, I didn't even know that there was an "inattentive" type of ADHD until Chase was dx.

[misty]

When Shannon was Dxed I knew OF ADHD but nothing ABOUT it! There was no one in my family with even a learning disability, let alone ADHD.

It would have been a HUGE relief if the psych who evaluated her & gave her the DX could have handed me a booklet with all the info I needed. As it was, all he really told me is that there are meds to help & I felt pushed to medicate. I would have LOVED to know that meds aren't always necessary & that there are other options (such as fish oil) that can be tried. I think most parents would try natural supplements first & leave meds as a last resort. A LOT of kids NEED meds, but not ALL of them & it would've been nice to know that.

I would have liked to have been supplied with a list of support groups as well. Online communities and local support groups that meet in person. Anything that would have allowed me to start talking with other parents going through the same nightmarish emotions that I was would've been SO helpful! As it was, I researched for WEEKS before realizing there were people out there that I could talk to.

I wish that I could've been given comprehensive information on how best to get through all the red tape of getting an IEP or 504 in place. And they should include how to go about getting your child an advocate as well. Luckily, my district was wonderful & worked with me to get my child the services she so desperately needed, but so many districts do not. I think parents need to know how best to advocate for their child. They need info on how to get through to their child's teacher as well. The best ways to talk to the teacher about ADHD & some websites they can direct the teachers to for info on how best to help our children without neglecting the rest of the class. So many teachers think its so hard to deal with when there are actually some simple things they could implement that would make a huge difference in the childs education.

My daughter started was diagnosed while in a private school. I think parents who's kids are newly DXed & who attend private schools NEED to be directed to some great books or websites that will list some of the accommodations that their child will benefit from. I had no idea what to ask for! It took me quite awhile to realize that ADHD does not simply mean that my child spaces out, squirms, & doesn't pay attention, but that it really takes a toll on her education and that there are accoms that can really help!

[puzzled]

It took me from March until October before I found the message boards! I had no one to talk to, my husband was concerned but kind of tired of hearing me obsess, and I had no one else. A pamphlet with all of that info like Misty mentioned would have been great I agree.

[meli]

I agree with you! When ds got dx it took years before we found these mesage boards. The dr. give you these letters and you are to figure out what to do. When they tell you you have diabeties they don't just give you a scrip and send you on your mary way! So why do they do that with ADHD?
T
he first school ds went to had no idea about an IEP. I had to demand mettings and finally got a hold of the right person in the school district which was the social worker! She was the one that told me about the IEP. they acted like it was only for severly handicaped children. All I needed was a pill and all would be fine!

I think every Doctors office should have some kind of packet to give to every childs parents! Giving info on support groups, treatment options, message boards, psycologists in the area, names of advocates, and how to go about getting modifications at school. That would have helped very much!

[unicorn]

What a great thread! I have asked some of Tiff's friends mothers for input as well.

[charliegirl]

good idea Uni

[jfla]

I'm glad this thread was started. (I'd been thinking about doing that...procrastinator)

I did stop by my son's doctor's office (ADHD specialist) to tell them i would be going to this roundtable discussion and asked for input from any of their parents.

[charliegirl]

This is the last day. We leave tomorrow. I will be printing it out to take tonight.

[charliegirl]

I've printed out what is here and don't know if anyone will be able to check it for future replies after now, so I'm locking the thread against future posting.