Parents of Kiddos with a dx...what Do You Need?

I do not have a child with a diagnosis, but I did read all the responses and thank you for the post because I have learned from reading the responses. I have learned not to try to help and to just back off and understand that the parent is doing the best job they can. And if I can get others to not stare or comment, then I AM helping. Again, thanks for the post and the lessons learned.

My son is 6 years old. He has a diagnosis of Social Pragmatic Communicative Disorder (which is a lot like Aspergers though technically he is not on the Autism Spectrum, so I usually just tell people that he has Aspergers) and ADHD.

When my son is having a meltdown at a restaurant, store or other public place, I wish people would just leave me alone and not try to help. I'm sorry that he might yell or scream. I'm sorry that he might lie down of the floor like a 2 year old and refuse to get up. I'm sorry that that might effect someone else's experience. I am learning, too. I am learning to have patience, to be even more consistent, to remain calm but not back down whenever possible so that he doesn't learn that throwing a tantrum will allow him to get his way. I am still learning.

When people try to help, they actually make the situation worse. They draw more attention to my son, which causes him to get more upset. I do realize their intention is good, but it does not help at all!

On the other hand, I need to learn how to deal with people when they do try to help or just when the stare. I need to remind myself that they really have no way of understanding and that I really am doing all that I can and doing it to the best of my ability. I need to remind myself that it doesn't matter what people think. I know that I am doing all I can for my son. It would be nice of others could be more understanding, but that's just not always going to happen and I can't afford to spend any energy on them. It takes a lot of energy to be a good mom to my son and to be a good mom to my older son, who also deserves my love and attention. They need my energy. I do not need to spend energy on bystanders.

Try not to give too much thought to those who question you. You know that you are doing all you can do and you are working with the doctors/teachers/specialists, etc. That's you can do.

I do find it's helpful to just be upfront about our son. I tell his teachers, other parents, scout leader, etc, about his diagnosis. Knowledge is power. I know some people prefer to be private. I'd rather be open. A family we are good friends with have a daughter with some special needs. We don't really know the specifics, because they prefer to keep it private. My husband has commented (to me) many times and asked why they won't try to help her. I had to remind him that just because they don't report to him the specifics doesn't mean they aren't doing anything. (Where do people get that idea?) They want to keep it private. I'm ok with being completely open. I'm sure some people find it odd, but I like others knowing that our son has a diagnosis (no, we are not ignoring his needs), and we are doing everything we can.

ETA - Thanks, Julie S. You are absolutely right. I will practice smiling and saying, "Thank you, but I've got this." I know people mean well.

Patty K, yep, some people will choose to keep things private. I find it very helpful to not be private, but that's what works for me. My son is very loud and can definitely make a scene, so I see absolutely no advantage to keeping his diagnosis private. Each family has to do what works for them.

I can say that we don't reach out much anymore in our family to others that we feel might not understand our situation. We 2 of our children have serious enough special needs that they will never live independently. We have made the decision to move them to a group home when the time is right. We found out quickly the judgment that people rained down on us for considering "getting rid" of our children. Of course, all people without special needs children. We draw a circle around our family and keep at arms length the people who we deem to be unable to understand our situation (we find them to be that way because they have not walked in our shoes, not because we think they are bad people). Perhaps we can invite those people back into our lives when we no longer have the responsibility for the daily care of extremely high needs children. In the meantime, they need to stay "outside the circle."

My husband and I are our own biggest supporters. We expect nothing from our family or our community (but graciously accept when offered). I expect the school do to their jobs - no more and no less. I expect that when my kid has a melt down in public, that people will stare. I also expect that when people try to "help," I am going to sternly tell them to step away. I do not care what these people think of me or my parenting. I have had to adjust my worldview regarding my own family and in-laws as well. We are close to some who have patience and understanding for what our family endures everyday. We are not close (but still love) family who are not able to understand.

My husband and I are masters at shutting down "well meaners" and their "well meaning advice." We take nothing personally that is said about our children or how we handle parenting such special kids. Why do we care? They don't have to do it, we do. I remember that before these boys came to us, I may have been judgmental without realizing it. That makes it easier to let go of.

Honestly, I do not "need people to know" or "need them to understand." They won't or they can't. Doesn't change what I need to do each day for my boys. I might sound jaded or perhaps uncaring, but honestly it is the way to survive one of the toughest roads a parent has to walk. Head held high, no complaining, no justifying, no explaining, and with a self-confident smile on your face.

Thank you for sharing your views. I am also trying to learn the right way to help. For me, sometimes I want to just help the mom (or show solidarity), not realizing it may come off the wrong way. I think motherhood is the hardest/best job we have. I don't want a mom to feel like they're all alone. In my ignorance I've asked is there anything I can do to help? I'm not trying to be anything but supportive. Just like I would never not offer to help someone who is struggling to carry things. I would ask, can I help you to your car?

Thank you for sharing what really helps.

Blessings!
L.

You've worded what you need very well. I want to add that if people don't understand at least some of that, telling them what you need will not help. Set boundaries based on your needs. However, remember they also have boundaries which may not fit with what you need. Choose carefully when sharing information. Grow friendships with those who want to understand. Let those who don't remain ignorant. Tell them you don't want to talk about it and/or walk away. Don't get caught up in their wish to show you, that you're wrong.

I have 3 out of 3. My SD is MOMR, my DD is ADD/Asperger's and my DS is ADHD with anxiety. So I get it. I don't really care what anyone outside my circle thinks. Or inside my circle too I guess since my mom just doesn't "get it". She falls under the "ignore the issue and it will go away". Ugh. I guess we all just have to remember we are on different paths and my path my not be the path for you. Your path may not be for me. What works for some, doesn't work for others. So I think it's helpful to share our personal experiences and what has worked, or not worked for us, but have to remember that it may not work for someone else. I think we need to remember that we are all doing the best we can and hopefully when we know better, we will do better. =0)

1. Understand the doctors know what they're doing. These are not made-up conditions. Stop second-guessing them.
2. We're often just hanging on by a thread as parents. If you know we're knee-deep dealing with problems with one condition, please don't start bringing up what you've noticed about another one. We already know, but sometimes have to prioritize.
3. Skip the commentary, tips and criticism. Our son has SED/ARFID, an eating disorder in which he eats an extremely limited number of foods, none of which are healthy (hallmark SED/ARFID). He's seen specialists over this and had to go through treatment to gain weight. Telling us he's eating too much sugar isn't helpful. We know his diet is awful, but that's what SED/ARFID is like. If you can't be bothered to read the info. we shared with you about the condition, keep your thoughts to yourself.
4. Understand having a child with a lot of conditions is expensive. Unless you happen to be very low income or spend an astronomical amount each year on medical expenses (think hospitalization), you can't get any assistance and have to fork over a lot of money over the course of a year. Keep this in mind when offering those helpful tips. We don't have money to waste on a bunch of "solutions" with no scientific basis.
5. Don't even start suggesting diet, detoxing and vitamins as solutions to brain disorders. JUST DON'T.

Empathy. That's all. Oh, and for people to stop trying to sell me a miracle cure.

My 10 year old son has ADHD with anxiety. I tell all his friend's parents so they will "understand". I actually had one parent tell me my son can be a little weird. Well yeah he's different...he can't help it, etc etc. I just wish some people that are involved in my son's life would just read/learn a little about ADHD so they will understand. I guess that's a lot to ask, but that's what I need.

i'm glad you posted this, as it's helpful for those of us without these particular challenges to read about what is helpful and what's not.
we read articles all the time, but they are so conflicting. don't stare. don't avoid staring. offer help. offer support. STFU and mind your own business. ask questions. don't ask questions. there's no way to tell what will trigger rage in someone, and what will be perceived as quiet support, but the more i read this sort of post and its responses the better i understand (i hope.)
privacy, i'm just sick that anyone would judge you pejoratively. i'm so sorry.
khairete
S.

I had a situation with my daughter who was struggling as a learner but not so much that she was elibigible for special services or an IEP. This left is in no man's land with respect to support from the school, so we had our own neuropsych done. It took months to schedule, took two days out of school and was expensive as heck. There were some weaknesses in working memory and attention, and while we were offered a medical diagnosis so she could receive supports... she really wasn't clinical. We were interested in actually helping our child, not buying accomodations (though there does seem to be a market for that!). She really needed some strategies, but the psych who performed evaluations stopped there and recommended we see somebody else for learning therapy. Ultimately, she really just needed her weaknesses identified and some strategies to apply with help from us and her teachers... plus some ways to practice them. From this she learned how and when to apply strategies and she's doing quite well now, coping well with her deficits and leaning on her strengths. Surpisingly there are very few alternatives out there to help. One is learning works for kids, which tells you which apps to use if your child has a diagnosis. Another is Mindprint Learning, which identifies learning strengths and weaknesses via an online neuropsych and then tells you which apps, games and learning strategies to use. Both are fairly inexpensive. I suspect these are good whether you have an IEP or not. The one thing we know is that an IEP or diagnosis usually means a struggling child, not every struggling child has an IEP or diagnosis.

I guess my question is, why do you feel you need to share a dx with everyone. Maybe your closest friend or family member if you must. Other then that no one needs to know anything about your child.