So I am excited about finally getting to some answers for the many issues with which we have been coping. AND I feel concerned about with whom and how it is appropriate to share his information. I want him supported as he needs but don't want to invite all the misunderstandings others have (particularly on the ADHD side of things) into our lives without need. How do/did you manage with whom and how to share about your 2e children?? When/how did you share with school? Did you tell babysitters/ extra curricular teachers you see regularly? People at church? Any others? Part of my concern is I hope to have him greatly improving in the next few months if our treatment is effective. Who needs to know and what was your criteria?

I have read often here but would appreciate any advice or guidance those of you with experience have to offer me. I am meeting with our local Psychologist next week to discuss our results and talk about how to proceed ruling in or out dysgraphia diffinitively. My mind is sort of racing with seeing it all in print and knowing we have accurate information. It all just really fits... finally.

I agree. Need to know. (People are weird).

That brain scan stuff is totally cool; I would love to get that for my DD. It has the potential to really give an accurate diagnosis, as opposed to, say, checklists filled out by hostile teachers.

Also I agree with mon and CCN--need to know. And only *what* they need to know--like, for babysitters, just say don't let him have the sugary snacks or he will bounce off the walls (or whatever it is they might need to deal with). They do not need to know what his diagnosis is, or even whether he has one. Good luck

Nice! Lots of agreement here in your answers. When/how did you decide it was time to tell school?

Dbat yes the brain scans are so amazing! I am thrilled we were able to do it and it was completely worth the money for us in how much we learned and gained including learning about other family members through the process of their extensive interviews. We left with a massive binder they prepared for us.

The thing I was most happy with from my son's tests is that he has such high self esteem at this point in his life. The Dr at Amen also explained things in wonderful ways to not leave my son feeling "defective". Part of why I asked about who to tell is my desire to protect that precious self esteem. He is so confident and charming and I know those strengths can be invaluable in life.

Tell those who need to know because it will affect their interactions with him - teachers, etc., or if your child's behavior is such that it needs some explaining. I know this flies in the face of the recommendations to tell no one, but I've learned with my own 2E son that understanding by others has made all the difference in their interactions with him. It also has helped him not be ashamed of his differences. He tells classmates he has dysgraphia when they make fun of his terrible drawings or writing, and it changes the way his classmates interact. They accept his quirks better than if they didn't know.

I it isn't the kind of thing I tell strangers, but I don't hide it, either. It isn't something to be ashamed of, and if kids get the idea that you're hiding it from others, they'll innately think it is something they should hide and be ashamed of. Undoing that is almost impossible.

HappilyMom--

Actually we didn't have to tell school--school told us they thought there was a problem and then we got the eval (first of many) and shared it with them. This works great if you have supportive teachers, etc.; OTOH if they are trying to stick a label on your kid so they can 'counsel them out' for the next year, it's pretty awful. Plus then applying to any other school becomes problematic if you have a very negatively-worded evaluation. I guess I would follow the 'need to know' rule there, too--if they bring up certain behaviors in teacher/parent meetings, I would start to discuss it. Or if you're trying to get the school to do more/different stuff for him. It sounds like you're not asking that yet, so maybe it's better for now to wait and see, and try to figure out what your options might be for his academic and behavioral differences if they start to need accommodations. There have been lots of discussions on here about how difficult it can be to get accommodations from a school and how long it can take. Of course most people don't get to choose when to discuss it with the school, so you are in an unusual position.


I'm glad the Dr at Amen was so supportive with your son. It has taken us awhile to figure out how to talk to DD about her issues, but I think we're all comfortable with it now. And DD is doing great in her current school, so I guess we have another six months of enjoying things before we have to get ready to apply to the next school (her current one only goes through 6th grade).

It depends on the social environment where you are. But if a child has unusual behaviors, then they will be labeled by peers and adults-- sometimes "weird," "disruptive," or worse. It is much better for the child and for people in the child's environment to know the reason why things are as they are, to know correct names for disabilities and to understand that there are some extra challenges present.

For school, what do you see that makes you think there *will* be a problem but there isn't one yet? It depends on how your school handles things-- they will probably only assign a 504 plan or IEP when they really see problems, so you may need to wait some-- but I wouldn't let it get to crisis stage. They are going to need to do their own evaluation, even if you share yours. (You can make your outside eval a part of the evidence they consider, which is usually a good idea.) But there's no point in asking them to start their eval if they see no problems.

DeeDee

It sounds like you need to tell the school. We told our ds' school right away when he was first diagnosed - but we had to - his LDs were causing him severe anxiety at school and his behaviors were not only being noticed at school, the school staff was making incorrect assumptions about what was driving them.

Re who to tell outside of school - we have left this partially up to our ds. For instance, he's a Boy Scout, and there is writing required for some Boy Scout projects. DS is dysgraphic. He does not want anyone else to know. We've let him choose whether or not to tell at Boy Scouts and he didn't for a few years... and it impacted him. I felt like that was a safe place (in terms of long-term impact) for ds to test the waters and see what the impact of *not* telling was. Eventually he realized it was better for him to let the people he was working with know.

I agree with everything ABQmom wrote - this isn't the kind of thing you walk up to strangers on the street or announce to everyone you meet in line at the checkout stand at the grocery store, but it's nothing to be ashamed of and it's important that people you work closely with and especially teachers at school know. I've also found it's important that I show, as a parent, that it's not something to hide - otherwise my ds might think it's something to be ashamed or worried about.

Lastly, we've actually found other children with the same challenges as my ds *by* letting people know. There is another child in his school who has almost exactly the same set of challenges. The school was not going to tell me that - but thanks to my loose-lips at a morning coffee chat with a group of parents I barely knew, I found out. Just knowing that there is one other kid at his small school who has the same LD relieved my ds' sense of feeling different tremendously.

Another thing about school - if you choose to not share information that you have from private evals now.... and then two or more years down the road really feel like you need to, it might be difficult to suddenly pull it out and try to explain why it's important to consider now but wasn't worth sharing when the eval took place.

And... one other perspective. I used to lead an after-school club at my ds' previous school - the kids ranged from 3rd-6th grade. We had several children participating who appeared to not want to be their at all (and this was a club that was prepping for a competition). It was beyond frustrating to deal with the kids who didn't seem to want to be there; there were some behavior problems that were dragging down the entire group. I had *no idea* that one of those children had ADHD, and that was the time of day that his meds wore off. I didn't know because the school wouldn't or couldn't legally share that info, and his parents didn't tell us - until we were about to ask him to leave the club due to his noncompliance, his mom told us we couldn't do that because he had ADHD... long story short, once the mom opened up to us, we were more understanding *plus* his parents found a way to work with their ds and things worked out a-ok, and he eventually became a very valued team member. After that I couldn't help but wonder if there were other things going on with the other kids who were so challenging to work with, and if we'd had info from the parents would we have been able to find a way to make things work better for them too.

Gotta run, hope that made sense!

Best wishes,

polarbear

Thank you all so much! Lots to consider. Yes I guess it is unusual to have the option.

Your post reminded me of when my son started Midschool, HappilyMom.

He was going to a new school, had recently graduated from special education pull outs, occupational and speech therapy, and we decided that a new school was a good time to start with a clean slate. Sixth grade turned out to be his worst year, and much of it was because we chose to not be proactive about sharing his challenges and needs with the teachers. He barely passed sixth grade because of zeros. It was awful for him, me, his teachers and the administration. There was a lot of anger to go around and a lot of misperceptions and assumptions that filled in the gaps where no information had been provided up front.

Seventh has been a total opposite - and excellent year. Not perfect but oh, so much better. I sent a Welcome To My Kid letter to every teacher and the special Ed chair and principal the week before school started, including things that didn't work last year, what did work, how I could support them at home, and even what I recommended as ways to deal with him under certain certain situations. I felt like a Helicopter Mom on steroids, and it was hard to do. But armed with knowledge and an open line of communication, we've been able to nip most problems in the bud and prevent a lot of the problems we had last year.

Not always, but sometimes a clean slate is not as useful as it first appears.

What was nightmarish about it? If you expect that the same behaviors will recur, I would probably choose to be proactive about this now.


And people are probably thinking your child is misbehaving, when he's really doing his best. You definitely don't want that: it can poison the relationships with teachers, etc. if they think your kid is just a bad apple. Better that they understand what's going on.

In those situations at church or in public, we share, more or less depending. If someone is going to be in charge of our DS who has AS, they need enough information to keep him safe, which includes "he has Asperger's, so sometimes he gets more upset than the situation warrants" and "when he's upset, this is what works to help him calm down." If they're in charge of a kid who doesn't sit still, they should know about the ADD as well as anything you can tell them to help them work with him successfully.

For people who are casually judgmental and there will be little or no further interaction, no sharing is needed. But I have been known to quietly say "sorry, he's a little autistic" by way of increasing understanding-- just so they know the score.


Being frank with the principal now may help settle your DS with the best teacher for next year.


I wouldn't fight for grade acceleration until the writing skills to keep up are in place. Polarbear has great advice about this above.


Also an excellent idea. Because you have an in with the school district's social worker, that may help get the right things in place before your DS needs them. The more you write, the more I think sharing would be better done sooner rather than later.

Once you get them started on their eval, it can take some months, so you wouldn't have a plan until perhaps May even if you start now. If you're anticipating problems in August/September, it could be good to at least have the ball rolling...

DeeDee

My husband and I are also dealing with trying to decide who to tell about a new diagnosis and in my son's case, the need for surgery. I have a sister who would post everything about it on facebook and would probably take pictures of my son in his hospital bed if she were allowed in my son's room after he has surgery. She did this when my dad had surgery. I have a family that has trouble keeping secrets so I feel like I can tell no one and it is so isolating, but I feel like have have to isolate myself to protect my sanity. My husband agrees that this is best, but it is hard to have no emotional support.

I read about the symptoms of PTSD and I think I have it from watching family members who are closest to me going through difficult, painful medical issues and knowing that it is not over and will get worse before there is any chance of things getting better. Yesterday we had to listen to a surgeon explain the chances of surgical complications, including the possibility of death or more disability, for a surgery my son will have to have. My son and I already had white coat anxiety and we have found nothing that helps us keep our blood pressure down when we have to go to doctor appointments and listen to bad news. My son did tell me the night before that he needed to stay up almost all night and distract himself by reading and playing video games so that he wouldn't get much sleep and would be so tired that he could remain emotionally flat.

I don't think I can even tell the people at the church I used to go to or the religious homeschool group we belonged to for a while because I can't take hypocritical church members suggesting that we must be more sinful than they are for this to be happening to us or that we are more sinful because we have anxiety about issues we are dealing with.

My son lived with a misdiagnosis for years. He felt the judgment by family and people in our town who thought his problems were caused by too much time reading and doing things on the computer instead of playing sports and that his handwriting was sloppy because I didn't make him practice enough. We were judged by family members who thought my son just needed to exercise more. In my gut I knew that my son tried very hard to improve his writing and he was doing the best he could do. We had trouble getting his PCPs to refer him to specialists. He had a physical reason for his dysgraphia and we could not get a proper diagnosis until he was 14.

I try to consider my son's feeling about people knowing. Right now I know that he does not want people, including family, talking about him. We live in a sports obsessed small town where they expect all kids to be the same. They are bullied or made fun of if they are not, so in our case it is best to not tell anyone, but if people were more supportive here and my son felt this support instead of their judgment, I would want to educate people about my son's gifts and disabilities.