I have three boys with several diagoses' including ADHD, Tourette Syndrome (TS), Anxiety, Depression, and one Bi-Polar - plus a few more. As a parent who loves children and teaches in a public school I have been exposed to many, many different diagnoses. But let me focus on the parent part.
The thing a parent needs the most when going through the process of diagnosing, exploring different medications, and such is a friend - or several. This process is so consuming that the parent doesn't have time or energy left to build their needed support system. They need people to step forward and be their friend and support, even though the parent won't be able to reciprocate much. The friend(s) need to organize relief times for the parent(s). We could not ever escape the demands of these special needs children because people were too afraid to take on the task we dealt with daily. The two weekends we managed to get away in a 10 year period we had to send our children to different places. This was OK, but as a parent I felt like I was begging people to care for my child, thus we only got away those couple of times. Parents love their children so much they hate to leave them, but in this day I think we are all starting to realize that parent can't keep on giving and giving to their children if they don't have times away to refuel.
What ultimately helped was discovering other parents going through the same issues, and exchanging a couple hours of care here and there to give each other the needed break. It's not a break because we want to get away from our children, it's because we realize that we don't have any more to give to those children, and we want to so badly meet their needs. We need refreshing, rebuilding of our self-esteem (am I really being a good parent?), and to feel like someone really cares about us to the point of giving of themselves to help meet our needs.
So, I think the best advice I can give is for parents not to be afraid to approach people they know - even relatives - and explain the needs they have as a parent and ask this person to help them, or help them locate help, so they can continue loving their children - and each other as spouses - through the overwhelming demands placed on them. If I could do some of it over again I would have been more assertive in this area. If we are not cared for and loved as adults, we are empty when it comes to caring for and loving our children, and therefore they are not getting the best care possible. People outside of our world of parent special needs children cannot possibly understand what we deal with until we take the opportunity to talk with them and draw them into our world.
The other help necessary is someone to come along side parents and help them weed through the process of diagnosing their children and seeking the best treatment for them. Someone to track down what help is available - both financially and in other supportive ways, so the parents aren't floundering around and finding things out after it's too late, or missing deadlines for various applications. Help is also needed to get those applications filled out - what parent of special needs children has time to get applications filled out? We barely have time to wash our hair some days!
The old phrase: "It takes a village to raise a child" is very, very true in homes where a special needs child lives.
YES!!!
We need to take this comment and place it on every forum for parents having children with special needs. It is absolutely critical that parents get the support they need...from emotional support to hands on help through babysitting or going with the parent to appointments. Otherwise...you get burned out.
I found tons of support on-line to meet some of my emotional needs. Over time you forge some very special friendships with other parents. These people taught me everything from how to write a letter to the school to get services to...how to potty train my son. I would not be sane today if it were not for this support. I also joined local groups...for me...the autism society...who were exceptionally helpful.
Finding others to babysit or share babysitting time is...a blessing. At first I felt guilty...how can I take this time for myself? But it was essential for me to refuel so that I could help my son more. This journey is long...we will always be parents...you have to find ways to stay in the ring. You give some great suggestions.
I am very interested in hearing more of your parenting story. I hope you will share more here. And thank you for your comment...it is inspiring for any parent who reads it.
Thanks again for sharing your thoughts with us.
I am a mother with a seventeen year old daughter who has been diagnosed with ADHD and Mild form of Asperbergers. Raising her was always a little challenge I liked to call her a spirited child and she is an exceptional natural artist. We didn't notice anything extreme as she was growing up. We had her tested after her elementary school recommended she stay behind in first grade. We never received the testing information just a phone call saying she did not test for any learning disabilities. We find out come high school an opting to go through this process once again that the past file showed she was high risk for learning issues and ADHD! Everything changed for us when she hit sophmore year and becamed very depressed. We immediately got her help and started therapy. It was then she was diaganosed with ADHD. Her troubles didn't improve dramatically and we come to her Senior year and her therapist feels she fits in with signs of Aspbergers. It has been a long road and we love this child so much. It really in the end doesn't matter what labels they want to put on her challenges, they are just that challenges that we are helping her with and getting her the help she needs with these conditions. I wish it was easier, but nothing in life is easy. It is helpful to hear others stories and any advice other parents may have that have raised a child with ADHD and Aspbergers.
Hi there
Please know that you are not alone in this. I have heard many stories similar to yours. I am just glad that finally you have a name for what is going on with your daughter...it does help. What are they saying about her learning? Does they feel she has any learning disabilities at this point?
I wanted to first give you the link to an interview I did with author and advocate Stephen Shore. He is an adult who is on the autism spectrum and he is very articulate about discussing his experiences. His books are great for explaining Asperger's syndrome from the point of view of someone who has it.
Tony Attwood has a website with tons of information about Asperger's Syndrome you will want to read. He has a lot on his site about girls and women with Aspergers.
I do hope you will stay on this site and tell us more about your daughter and your parenting experiences. I am so glad you took the time to comment. Please do come back to let us know how things are going.
Thank you very much for your comment.
Thank you so much for your reply. Even know my daughter is in the last semester of her Senior year, by pursuing testing once again with the school system I have gotten the school psychologists attention and she was not pleased that the schools never paid attention and followed my daughter's progress or helped in anyway. It looks like we will have what we need to provide her with a 504 plan, so should she decide to get extra support or special conditions in college she will have this plan as a way to get this special help. The only thing is my daughter as to pursue on her own, I cannot help as a parent at the college level. I guess that is good in someways, as I am trying to let go some and let her figure things out, even if she has to go through a difficult decision. I have bought a couple of Tony Attwoods books and have been trying to read as much as I can. My main struggle right now is dealing with her moods and negativity, which always seem to be at me. I know she loves me very much, but I am an easy target for her to take her stress out on and it takes everything I have sometimes to not take it personally and to remain calm and positive. Thanks for your comments and helpful information.
We have been involved in the war zone of labels for 5 years, now. My son is now ten and upon his most recent release from the child and adolescent
psych ward, we are seeing yet another psychiatrist. Funnily enough, until his release, he was being treated for ADHD, BP II (nos), ODD, RAD, and anxiety disorder. His treatment regimen no longer includes the lithium, and we have added prozac. Abilify and lamicatal are still in the 'mix' but at significantly reduced levels. Did he ever have BP? He did and he does, and we as parents know this. However we are willing to try this new docs approach - for now. The school is not so forgiving and the alphabet soup of guesses does affect his IEP. I have a sped. background as well, but what about the many other parents who are not as trained or perhaps as bold in their dealings with a formidable school faculty? Fortunately there are some very helpful texts and websites . The Wrightslaw website has been very sanity saving...as has Ms. Merely Me. thank you!!
I hear you.
I wish I could say your story is unusual but you know it is not. 
There are just so many parents dealing with ever switching labels. And it makes it so hard for everyone involved. And like you say...it affects the IEP...it affects the insurance covering things...it can be a big 'ol mess.
I have wondered the same thing...here I am with a background in special education and...it is difficult for me to understand all that is going on with diagnoses...so what do other parents do? Where does one even begin when trying to understand this process and most of all...how to help one's child?
Thank you so very much for taking the time to comment and share your experience with us. I hope you stay on this site and write more. We need more parents to participate and build our community here. As a previous commenter just said...it takes a village.
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I just received information from my son's school psychologist that he appears to have ADHD based on the recent rating scales we completed. He is also showing possible signs of ODD. I am feeling a little overwhelmed. I'm scared of making the wrong decisions or even the wrong diagnosis. In an effort to sort through everything, I've created my own blog to track the feelings I'm experiencing throughout this and I think that will be therapeutic. What a crazy world we live in. These things didn't exist when we were kids which is what I guess makes it so scary now to accept. I welcome ideas from parents in similar situations. I love my boy more than life itself and label or no label, I think he's a great kid with a lot of potential.
Hey there
I am so glad you have commented and that you are sharing your story. I know...the diagnosis can be very unsettling. But there is also comfort in it too over time...that you do know what your child has and that there are successful ways of helping him cope.
This is just the beginning of your amazing journey.
Don't let the label take away any of your hope. You are very right to say that your son has tons of potential. Even when others may not see this potential...you know it is there and you will be your son's strongest advocate.
If you need any information and resources just ask. If you need support...you got it.
I hope you keep writing here. We would love to hear more from you.
My 6 year old son has ADHD, ODD and a sleep disorder. Please don't let it overwelm you. Your son is a wonderful human being who just needs some extra help and lots of love. Ignore the people who think that physical discipline will help. They have no idea how to parent a child with ADHD/ODD. Please ask if you need help or have questions. We were lucky and got my sons diagnosis in preschool. We have been able to get him the help he needs and he is successful at school. At home when the ODD kicks in we have learned to quit arguing. It doesn't do any good. Consequences and owning up to your actions works well. Make sure that you use a lot of positive behaviour support. That is the most important thing. Award him with praise and love when he does behave as you would like him to behave in the future (like he sat through dinner without knocking over his chair or someone else). Make modifications such as let him stand to eat dinner so he doesn't get in trouble for fidgeting and knocking over his chair. Since he knows its not a punishment my son will ask to move his chair so that he can stand when he is having an impulsive type of day. It saves stress for everyone, including him.