Adjusting to a diagnosis

[jreeds]

Word vomit ahead

DS, 7 GAD, ADHD ( and now ASD). Was recently also diagnosed by his child psychiatrist as on the Autism spectrum. It was both a shock, and not a shock. If that makes sense? H in particular is having a hard time. His initial reaction was that they are wrong. Though I think now that he's had some time to think it's starting to sink in a bit better. Part of the problem is up til now while most of the professionals who have evaluated DS have noted the flags for ASD, none of them felt he met the threshold for the criteria. To me, what I think that tells us is that DS has hit the limit of his social functioning within his age group. The psychiatrist has referred DS to behavioral therapy so we've started that.  I've not notified the school yet of this diagnosis and I guess I'm not really sure of the proper way to do so. With his GAD & ADHD we just told them at the next IEP meeting following the appointment. With it being summer it's a bit different, though DS is starting ESY so I guess I should just notify his IEP case manager? It's probably a stupid question I know. And I also wonder how we should share this info with family? Including DD, who is 9. Is she really old enough to understand?

Anyway, sorry for the rambling. I just have a million questions floating in my head and with H processing this info in a much different way than I am, I feel a bit alone. I'm keeping a running list for when we have our next apt with DS's doctor but right now I feel a bit "now what?"

[waverly]

I think there is that period of adjustment and strong emotions and you just have to ride it out.

For DS's OT since it was mid year, I just dropped a copy of the assessment at the counselor who is his case manager with a letter. This prompted a school IEP meeting- they declined OT but that's another story.

For us we shared most stuff with family but not everything. I think you have some time on this to think it through and decide who you want to share it with and who you don't want to. I might keep it from people you know/ think might be unsupportive for now. I think 9 is old enough, but I would wait on her for a while until you get your bearings and she might not need specifics. You don't have to tell anyone until you have time to process it.   I am not a big sharer, but I would vote for telling only essential people or the most supportive people at first and getting through the first few months before telling others because once the cat is out of the bag you can't stuff it back in.  But I wouldn't keep it as super secretive either.  A middle ground leaning towards privacy, I guess.  Others have different points of view.  

[jreeds]

Jul 12, 2018 13:12:01 GMT -5 waverly said:

I think there is that period of adjustment and strong emotions and you just have to ride it out.

For DS's OT since it was mid year, I just dropped a copy of the assessment at the counselor who is his case manager with a letter. This prompted a school IEP meeting- they declined OT but that's another story.

For us we shared most stuff with family but not everything. I think you have some time on this to think it through and decide who you want to share it with and who you don't want to. I might keep it from people you know/ think might be unsupportive for now. I think 9 is old enough, but I would wait on her for a while until you get your bearings and she might not need specifics. You don't have to tell anyone until you have time to process it.   I am not a big sharer, but I would vote for telling only essential people or the most supportive people at first and getting through the first few months before telling others because once the cat is out of the bag you can't stuff it back in.  But I wouldn't keep it as super secretive either.  A middle ground leaning towards privacy, I guess.  Others have different points of view.  

Thank you for your response

You make a good point on taking time to tell people until we fully process it. I do want to be sure I am in a good space to be able to answer any questions. With DD, we have had talks with her before RE: DS's behavior, not in relation to diagnosis. It's probably a good idea to keep it to that level for her at this point.

I'm so hesitant about telling my family. H's family is amazing and I'm sure we will get nothing but support from them. but mine is...not so much.

[waverly]

I just want to say then if your family would not be supportive. You don't have to tell them at all.

[funchicken]

We just got DD1's ASD diagnosis in April. I'm giving myself time to adjust to things before I decide who to share the info with. The only family member I've told is my sister. Since DD's diagnosis came about in the process of a school evaluation last spring, the IEP was the first thing we did (in May).

Because my DD is 10, I don't plan on sharing the information with anyone but teachers until I am able to talk to DD about it. While I haven't talked to her about the new diagnosis, the school SLP did show her parts of the evaluation including her pragmatic language score, and I've talked to her about her other IEP goals related to organization and anxiety around math.

I think it makes sense for you to let his IEP case manager know. Then you can decide if you need to revisit his IEP once school starts.

I have two younger girls who are NT, and I talk to them about social communication as a skill that some people have naturally and some people need more help with. It helps that our elementary school uses Social Thinking vocabulary school-wide. The counselors introduce it to all of the students, so using it at home makes sense to them.

I'm sorry your DH is having a hard time with the news.

[auntie]

jreeds,


I'm sorry to be late to this party. I've been busy with my crazy mother in the hospital.


I could have written this exact post except for the bit about the 9 year old daughter in 2000. I know exactly what you mean about a shock/not shock. DS was diagnosed by a psychologist few weeks before he turned 7, with a second opinion a few months later by a developmental pediatrician. DS didn't have any of the sort of delays or behaviors that would have engaged EI or gotten a physician or teacher alarmed. I knew in my gut that DS was different; he was quirky as hell. He spoke in full sentences by 16 months, was ridiculously engaged with us and friendly with older kids and adults. His teachers assumed he was gifted with perhaps a little ADHD. His pedi blew me off with "he's the highly valued child of older parents".


We red-shirted on the advice of his pre-K teacher because she felt he wasn't emotionally ready for the full day rigorous academic program of the indie school we had in mind for him. He hit the wall in kindie. DS's brand of ASD- Asperger's- presents with a delay in social and emotional maturity of about 1/3 chronological age so it can take a while for a bright kid to stand apart from their peer group- a four who acts more like a three can be seen as a late bloomer if they're bright, verbal and meeting milestones related to motor skills more or less on time.



DH and I processed the dx very differently at first. This is very common, especially if the child is a boy. I wouldn't say DH and I weren't on the same page, he wasn't even in the bookstore with me. For a time, he refused to see DS's issues. Then he went through a phase where he put a positive spin on them as if DS was superior to other kids. This were dark days. I think this thinking came from 2 things- firstly, DH definitely brought some of the ASD traits to the party. I don't think DH is on spectrum; he's more of the brilliant guy with no common sense. I do think his older brother probably met the criteria for HFA as a kid based on stories the family tells and his younger brother's youngest DD and granddaughter both seem quite Aspergerish to me. BIL's 3rd and current wife is a clinical psych who secretly shares my opinion about the granddaughter who is in high school. TL;DR- DH is surrounded by quirky people and probably doesn't know what NT looks like. The other thing is that DH had no idea what a typically developing kid was like. When I sent the two of them off to cub scouts together it kind of knocked the scales off DH's eyes. Painful for him, helpful for me.


For other dads who dreamt of a sporty BMOC kind of son to relive their own glory days, having a son who will likely not be that kid is too painful to accept easily.


For me it was just mind boggling that I had been raising this kid for 7 years and didn't know that he was developmentally disabled. I went through the classic stages of grief mourning the kid I thought I had an became consumed by worrying about his future. He's 24; I am still consumed by many of the same questions. Although I know now that he will graduate from high school and college, be capable of competitive employment and drive. Marriage and kids? Probably not in the cards for him.


If you have a report for the doctor who diagnosed him and it's "clean", I would make a copy for the IEP team and write a letter requesting that the IEP be re-opened waiving your 10 Day Notification. If the doctor or psychologist made educational recommendations, do share them with the school district. They don't have to comply, but it does give you something to work from in rewriting his IEP.



As for your DD, I would take some time to get OK in your own head before dealing with sharing with the kids and family. It's not so much that this is shameful, but once it's out there you lose control of who knows. And eventually, this information is your son's to share or not. I shared with my close friends, close family (both my BIL's- a physician and psychologist told me the diagnosis was wrong/my own cousin who is very like DS saw a psychiatrist and got his own dx at 40), and DS's scoutmasters who were responsible for him on trips.



There's a great book for your DD once you do tell her.

www.amazon.com/Autism-Through-Sisters-Eyes-High-Functioning/dp/1885477716

[jreeds]

Jul 13, 2018 10:40:10 GMT -5 funchicken said:

We just got DD1's ASD diagnosis in April. I'm giving myself time to adjust to things before I decide who to share the info with. The only family member I've told is my sister. Since DD's diagnosis came about in the process of a school evaluation last spring, the IEP was the first thing we did (in May).

Because my DD is 10, I don't plan on sharing the information with anyone but teachers until I am able to talk to DD about it. While I haven't talked to her about the new diagnosis, the school SLP did show her parts of the evaluation including her pragmatic language score, and I've talked to her about her other IEP goals related to organization and anxiety around math.

I think it makes sense for you to let his IEP case manager know. Then you can decide if you need to revisit his IEP once school starts.

I have two younger girls who are NT, and I talk to them about social communication as a skill that some people have naturally and some people need more help with. It helps that our elementary school uses Social Thinking vocabulary school-wide. The counselors introduce it to all of the students, so using it at home makes sense to them.

I'm sorry your DH is having a hard time with the news.

Thank you, that is helpful. Especially the bolded. We've had some similar conversations with her in relation to his anxiety and the agitation that he shows when he is especially keyed up. So it does make sense to relay it to her along those same lines.

[jreeds]

Jul 14, 2018 7:08:41 GMT -5 auntie said:

jreeds ,


I'm sorry to be late to this party. I've been busy with my crazy mother in the hospital.
Of course, no worries at all!

I could have written this exact post except for the bit about the 9 year old daughter in 2000. I know exactly what you mean about a shock/not shock. DS was diagnosed by a psychologist few weeks before he turned 7, with a second opinion a few months later by a developmental pediatrician. DS didn't have any of the sort of delays or behaviors that would have engaged EI or gotten a physician or teacher alarmed. I knew in my gut that DS was different; he was quirky as hell. He spoke in full sentences by 16 months, was ridiculously engaged with us and friendly with older kids and adults. His teachers assumed he was gifted with perhaps a little ADHD. His pedi blew me off with "he's the highly valued child of older parents".
In a lot of ways I've always known he was different; silly little things that so many people would (and did) brush off. DS's own pedi blew off my concerns as me being used to DD  and expecting DS to be the same as her. We've since moved him to a new pedi throughout this process.

We red-shirted on the advice of his pre-K teacher because she felt he wasn't emotionally ready for the full day rigorous academic program of the indie school we had in mind for him. He hit the wall in kindie. DS's brand of ASD- Asperger's- presents with a delay in social and emotional maturity of about 1/3 chronological age so it can take a while for a bright kid to stand apart from their peer group- a four who acts more like a three can be seen as a late bloomer if they're bright, verbal and meeting milestones related to motor skills more or less on time.
This sounds a lot like DS for sure. He has been completely fine academically up to this point. It's the social and emotional maturity that is holding him back. Even now, the only reason they are concerned with him academically is because he missed so much class time due to behaviors.


DH and I processed the dx very differently at first. This is very common, especially if the child is a boy. I wouldn't say DH and I weren't on the same page, he wasn't even in the bookstore with me. For a time, he refused to see DS's issues. Then he went through a phase where he put a positive spin on them as if DS was superior to other kids. This were dark days. I think this thinking came from 2 things- firstly, DH definitely brought some of the ASD traits to the party. I don't think DH is on spectrum; he's more of the brilliant guy with no common sense. I do think his older brother probably met the criteria for HFA as a kid based on stories the family tells and his younger brother's youngest DD and granddaughter both seem quite Aspergerish to me. BIL's 3rd and current wife is a clinical psych who secretly shares my opinion about the granddaughter who is in high school. TL;DR- DH is surrounded by quirky people and probably doesn't know what NT looks like. The other thing is that DH had no idea what a typically developing kid was like. When I sent the two of them off to cub scouts together it kind of knocked the scales off DH's eyes. Painful for him, helpful for me.
I think H is starting to come around. He was convinced that if he only acknowledged his doubt to me, that DS wouldn't be effected. We had to have a long conversation where I pointed out to him that if H couldn't/wouldn't acknowledge the true issue, than he risks responding in an incorrect manor. Not only that but it makes it 100% for him and I to communicate on DS needs. H is working from home while DS does ESY half days, and they spend every afternoon together now. I have spent the last week or so backing off being the "default" parent for DS and letting him be the one to takes him places, watch him with other kids. He said to me this morning that watching DS with some of the kids at our local beach was eye opening for him. He really noticed how far behind them he is communication wise.

For other dads who dreamt of a sporty BMOC kind of son to relive their own glory days, having a son who will likely not be that kid is too painful to accept easily.
Thankfully H is not exactly sport either, lol

For me it was just mind boggling that I had been raising this kid for 7 years and didn't know that he was developmentally disabled. I went through the classic stages of grief mourning the kid I thought I had an became consumed by worrying about his future. He's 24; I am still consumed by many of the same questions. Although I know now that he will graduate from high school and college, be capable of competitive employment and drive. Marriage and kids? Probably not in the cards for him.
This has been on my mind a lot. What does this mean for him? When we thought we were "just" dealing with Anxiety and ADHD I had it in my head that once we figured out the best way to help him manage his emotions, it'd be smooth sailing ( so to speak). Now it feels like we're starting over and I'm not sure what might be realistic to expect from him.

If you have a report for the doctor who diagnosed him and it's "clean", I would make a copy for the IEP team and write a letter requesting that the IEP be re-opened waiving your 10 Day Notification. If the doctor or psychologist made educational recommendations, do share them with the school district. They don't have to comply, but it does give you something to work from in rewriting his IEP.
I should be getting that at our next appointment. I doubt we'll get a ton of pushback but we'll see. Up to date they have been great. He's already getting a ton of social skills support and will be starting off the year with 1:1 para in the classroom.


As for your DD, I would take some time to get OK in your own head before dealing with sharing with the kids and family. It's not so much that this is shameful, but once it's out there you lose control of who knows. And eventually, this information is your son's to share or not. I shared with my close friends, close family (both my BIL's- a physician and psychologist told me the diagnosis was wrong/my own cousin who is very like DS saw a psychiatrist and got his own dx at 40), and DS's scoutmasters who were responsible for him on trips.
We've decided to hold off on saying anything specific to her and just keep on addressing any conflicts related to specific behaviors without outright telling her his diagnosis. So far we've only told my IL's who have be in on our entire road to diagnosis thus far. They are very supportive, thankfully.


There's a great book for your DD once you do tell her.

www.amazon.com/Autism-Through-Sisters-Eyes-High-Functioning/dp/1885477716
Thank you! And thank you for your response. I appreciate the input. We still have a long road to go but the more I digest the better I feel about our ability to handle whatever comes next.