I need perspective and a new vocabulary

[athomeontheprairie]

I don’t know what I’m asking for. I don’t know that I have the vocabulary to accurately explain, either. I don’t know if this is a jawm or if I’m asking for help, insight or btdt advice. But here is the only place I know that has a hope of understanding and giving the appropriate answer (despite me not knowing what that means).

 

A short summary of the past: when dd9 was 2-3 she was a nightmare. Everything was a struggle. By this point in my life I’d been working around NT children for 5 years. Her behavior was not typical. I called the Dr. (the only time I’ve ever called for behavior) and was waved off as “it’s fine, she’s just different from her sister.†I took her to a play therapist who listened to me, and my concerns. Made my kid feel loved and heard. But didn’t “help†long term. Then she moved. And in our rural location there were no other options. 

Fast forward to 7 or so, her brother needed to see a specialist (he was a very intense, normal, but INTENSE little boy!) My two girls were in the room with us while the therapist (I wish I could remember what she was! The office did play therapy and diagnosed ASD and ADHD.) talked with me and my son. She played in the room with the toys. At some point my oldest took her to the bathroom. The moment the door was closed, she asked if I had had her diagnosed because in her opinion she had Aspergers. I . hadn’t, but in my heart (though never out loud), that was what I’d been calling it since she was 2.  

For the present: we have little episodes (do I even call them that?) where I KNOW things are not right. But I don’t know how to describe it. Things just don’t click for her like they do for others. Her interactions with people are off. The questions she asks, just aren’t quite right or typical.

Now the reason for the post: We were gone this weekend. 3 days at the lake with lots of friends. She was exhausted when she came home last night around 6. Bed at 8:30, slept until 10:30 (about 3.5 hours more than normal) and has been OFF all.day.long. And this is where I need … I don’t even know what!
I’m certain that if I call the dr and say she had a weird day that it won’t be helpful! But I don’t know what to say, or what to report/log. She was off. Everything was hard and a struggle. Nothing was good. Conversely, nothing was bad. But her interactions with others were not normal. There was no interacting with the siblings, unless they were bothering her or not doing what she thought they should. Simple instructions needed to be repeated multiple (MULTIPLE) times, and were often met with no understanding. No school happened because everything was too hard (I promise, it wasn’t. None of it was. Not even remotely) Her normal wit and banter was gone.

What do I do? What do I record? Who do I call,and what do I need?
I’m hoping today was a fluke. I’m hoping everything is back to normal tomorrow. But if it isn’t? We nearly all didn’t survive her being 2-5. I can’t do that again with three others in tow.
I read somewhere that because we, as a general society, treat girls different than boys, and because Aspergers presents differently across genders, we compensate for the differences in females better than with males. My oldest dd12 and I are great at compensating. It’s our normal. I  no longer know how to compare it to something else, because it’s all we know. Kwim?

 

[OneStepAtATime]

Have you considered getting an evaluation through a neuropsychologist?  Perhaps one that has experience with ASD?  Even if you had to go to a big city a few hours away it might be worth it to get answers instead of just guessing.  Answers might help you understand what is going on.  It also might open up resources to help you, maybe even get you access to supports you didn't know existed.

 

Unfortunately, some GPs just don't have the experience/background to understand what is going on with a child that is not NT, not even enough to want to suggest further evaluations through a specialist.  Ours certainly didn't.  We got additional evaluations in spite of our GP, not because of her (and I liked her, by the way, she just had ZERO background knowledge/experience in the areas we needed).

[SKL]

I think it's pretty normal to be "off" right after a big change.  Or she could be coming down with a bug.  I would give it a few days before deciding whether things are going downhill in the big picture.

 

That said, I have a kid who is very inconsistent and hard to understand, so I can totally relate.  Just last night I was up in the wee hours because I happened across something called Pathological Demand Avoidance.  Related to or part of the ASD spectrum.  A lot of it sounded like my daughter.  But then again, not totally.  :p  While it would explain some things, I don't want it to be her diagnosis because it sounds like a lifelong problem.  :(  ETA And anyway, it seems this "PDA" is not an official diagnosis, at least not in the USA.

 

I have a theory that there is a physical issue underlying the behaviors in my daughter, so I have a "consultation" with a health professional this coming Monday to start looking for the cause.  Of course it might be a combination of physical and non-physical issues, but I think it's wise to address the physical stuff first.

Edited August 15, 2017 by SKL

[PeterPan]

People don't all have even days, and people with SN have uneven days too. It sounds like, no matter what her normal is, right now she's very maxed out. She had extra taxing situations and needs time to recover. I would put your school work aside and focus on things that are calm and pairing, following her lead. So play with her, cuddle, whatever she responds well to. 

 

My ds did golf camp last week, and he's doing the same thing now, more fragile, needing more help to get calm. He can't handle a lot of extra demands, because he's maxed out. He's spending most of the day stimming (repetitive behavior where he's trying to calm himself). 

 

I get that she's withdrawing right now and that you're worried it will continue. Whatever you were doing the last few years has been good, because in general she interacts, complies, and is ok to work with. You have every reason to think that after the stress of what she has been through passes, she'll calm down and return to her normal.

 

I agree with the others that you should go ahead and do whatever your insurance requires to get a referral. It's not about just today. You probably have years of data and you just haven't been seeing it. This week, she's overwhelmed, so it's more obvious, yes. Make video of it, honestly. That's what I do. You can make video of repetitive behaviors, her not responding, anything you're noticing.

[Lecka]

This sounds like a "shutdown." I don't know a lot about it as my son doesn't do it.

 

This is my understanding though: there are a lot of stressful chemicals and the chemicals build up and then hang around a while.

 

I saw a speaker once who talked about it some, Brenda Smith Myles. My understanding is that it is the inward form of a meltdown. If one person would get very stressed and react outwardly, another person would have the same stress and react inwardly.

 

I think ask for a referral for autism or aspergers.

 

You can say she isn't responding typically in social situations, and can get overwhelmed.

 

It sounds like she might have sensory issues -- if she does, mention that.

 

But I think ask for a referral, or set up an evaluation.

 

If another person has asked you if she has Aspergers from spending one session (or less) with her, it sounds like if you see someone who knows what they are seeing (someone who knows about autism) then you won't have to worry about coming across as overreacting.

 

You could also share that with your doctor and say now you are seeing a need to pursue this that you didn't see a need for in the past. That is fine as your daughter is coming to a new stage in life, so it makes sense that you see a need now.

 

Good luck :)

 

I think too, if you are just used to getting along and getting along, take as good of care of yourself as you can. That is a good role model for your daughter, and maybe you learn some ways to take care of yourself that will help her, too.

[athomeontheprairie]

I think it's pretty normal to be "off" right after a big change.  Or she could be coming down with a bug.  I would give it a few days before deciding whether things are going downhill in the big picture.

 

Yes, I absolutely agree. All of us are off after a long, hard, super fun weekend. But she is off times a 1,000. Her response was so far off the charts, it reminded me that while we have a good functioning relationship something IS off with her. It was a good reminder, because sometimes in the day to day, I forget. It's mild. Then there are days like yesterday.

​

And while I have no reason to believe it will be that way regularly (or even often), I want to be prepared for that to happen. Perhaps as she hits puberty, we'll have new and different challenges that I'm in no way prepared for (beyond the obvious, of course!) She also couldn't "see" that she was off. Which I'm okay with, but I'd like to help her see that and realize it.

 

I was not okay when it hit at 2-3. Those years were with a doubt the hardest of my life. I wasn't sure we could make it. And it didn't help that everyone. EVERYONE. blew me off. I was so so thankful to the one doctor who SAW what I saw, and for voicing it.

 

Thanks everyone

[PeterPan]

Would you be *open* to doing Social Thinking materials with her? You've already had a professional say it's aspergers, and there's quite a bit available now that wasn't available 10 years ago. There might be some other good things that pursuing a diagnosis or pursuing some additional tools would do for you. It doesn't have to be a rabbit trail of stuff you don't want (food, chelation, etc. etc.). Some people find that just working on social thinking and being more aware of how they're functioning, how others are functioning, is enough.

 

Socialthinking - Home

[kbutton]

This sounds like a "shutdown." I don't know a lot about it as my son doesn't do it.  YES!!!

 

This is my understanding though: there are a lot of stressful chemicals and the chemicals build up and then hang around a while.

 

I saw a speaker once who talked about it some, Brenda Smith Myles. My understanding is that it is the inward form of a meltdown. If one person would get very stressed and react outwardly, another person would have the same stress and react inwardly.

 

I think ask for a referral for autism or aspergers.

 

You can say she isn't responding typically in social situations, and can get overwhelmed.

 

It sounds like she might have sensory issues -- if she does, mention that.

 

But I think ask for a referral, or set up an evaluation.

 

If another person has asked you if she has Aspergers from spending one session (or less) with her, it sounds like if you see someone who knows what they are seeing (someone who knows about autism) then you won't have to worry about coming across as overreacting. Agreed.

 

You could also share that with your doctor and say now you are seeing a need to pursue this that you didn't see a need for in the past. That is fine as your daughter is coming to a new stage in life, so it makes sense that you see a need now. 

 

Good luck :)

 

I think too, if you are just used to getting along and getting along, take as good of care of yourself as you can. That is a good role model for your daughter, and maybe you learn some ways to take care of yourself that will help her, too.

 

I really think an evaluation is warranted. The ages you mentioned in toddlerhood and the age you are heading into right now were the HARDEST with my DS. He has very mild autism and was not diagnosed until he was almost 9. He's an amazing kid, but he's 13, and there are still things coming out of the woodwork. We would be really in a bad spot at this point had we not sought a diagnosis. 

 

Keep in mind that some of the autism criteria can be met with historic data--like, her toddler behavior doesn't have to be her behavior now for it to count toward a diagnosis. https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

 

You are where I was a few years ago. I say have her evaluated while you are in a good place to address the issues that will come up.