So Overwhelmed..Is there something going on with him? - Page 2

[homemademomma]

I have nothing useful to add. I just know how frustrating it is when you are trying to figure out what is going on with your kid. BTDT times two.

[Tigerle]

DS looked so much like a child with Asperger's last winter that an experienced psychiatrist specializing in ASD basically diagnosed him on the spot after a two-hour interview.

After the usual round of testing it turned out he scored way below the cutoffs on the scales used to asess ASD. However, they did not really find out what was making life so difficult for him and us, except that he was very sensitive and anxious and probably gifted, all things we had known before. They had us do videotaped sessions with an OT specializing in developmental psychology who, while agreeing that he was nothing like the ASD kids whe was used to working with, felt that he might have "autistic traits", and while some of the tapes' evaluations where interesting, the whole process did not ultimately shed a lot of light on what the "real" cause of everything was. So it can happen that you walk away without the answers you were looking for. I allowed myself to simply feel relief that there was no ASD diagnosis, since it would have made mainstream schooling very difficult here (I live in Europe).

What helped, in our case, was that his behaviours appeared clearly cyclical. Things started getting better in late winter, and by spring it was clear that everyone had been barking up the wrong tree as it were.

Of course it also means that some of the behaviours are coming back now that christmas is approaching, but nowhere near as bad (we still don't know why). I am just much more relaxed about it knowing that it it is a phase. But if it HAD been ASD, I would have wanted to know that, too.

[Eloisa]

Tigerle, would you mind clarify a bit? What sort of behaviours was your son displaying?

Although on one hand, being given a diagnosis of Aspergers/PDD-NOS would be very hard for us. It's a condition that heavily affects our sons life. But on the other hand, if he does not fit into this catagory, I'm afraid I'll feel so lost as to what is going on for him. Could I have caused his behaviour?

On the whole, we thought he was improving. Happier, more relaxed, some sensory issues disappeared. But the last week or so, he's started toe walking. Tantrums are out of control. His movement and the way he holds himself has changed (very rigid, tense, straight arms and legs when I pick him up).

I really thank you all for being so helpful, and simply just being here to listen. I honestly thought maybe I would have felt more relaxed about this all, but having gone to the GP for a referral today, I just feel shaken. He is my baby. This is hard for me.

[Linda on the move]

Originally Posted by Eloisa 

On the whole, we thought he was improving. Happier, more relaxed, some sensory issues disappeared. But the last week or so, he's started toe walking. Tantrums are out of control. His movement and the way he holds himself has changed (very rigid, tense, straight arms and legs when I pick him up).

.....I honestly thought maybe I would have felt more relaxed about this all, but having gone to the GP for a referral today, I just feel shaken. He is my baby. This is hard for me.

  It is hard. It's a lot to take in. Eventually, most of us find a way to make peace with this, but it's a process.

For my DD, the degree to which her sensory issues are being appropriately met has a massive impact on how neuro typical she seems.

Also, there is a theory of child development that says that as kids acquire new skills, they go through a period of "disequilibrium," then they truly master the new level and go back to a period of equilibrium, so that childhood is a flux of periods of equilibrium and disequilibrium. I believe (and this is just my theory, not an expert opinion) that sometimes when my child is falling apart at the seams, that this is what "disequilibrium" looks like for her. Disequilibrium for a child even barely on the spectrum is a real mess. But for those same kids, equilibrium looks almost completely normal.

Like I said -- this is just my pet theory, and I was an English major.

But for us, when things are going rough with her, my first action is to work on sensory stuff and review everything in her life, and my second action is to hold on to hope.

[EarthRootsStarSoul]

I think my 4yo son has Aspergers, but we're waiting until he's older to get an evaluation.  That's just because his dad (my ex) is completely in denial.  When I tried to bring it up a couple years ago he freaked out and threatened me with violence.  My ex just went frantic and out of his mind (stalking me, borrowed a gun).  Now I'm scared to talk to him about it again, but I still see Aspergers traits in our son.  We have to wait until it shows up enough at school that a teacher brings it up as a possibility. 

If DS has it, it will come out eventually.  It doesn't bother me at all, because I have Aspergers or PDD-NOS myself.  I know who DS is.  He is a whole person, just as I am.  He is brilliant, funny, curious, and self-motivated.  He has some trouble at school staying with the group.  He will just go off on his own to play with something when he is supposed to be at circle time.  The way I see it, he just has his own agenda for how he spends his time.  Not entirely a bad thing.  He wants to do things that are more interesting than what the group is doing.  He has sensory things, trouble with transitions, talks incessantly regardless if anyone is listening, interrupts, tantrums, repeats meaningless movie quotes.  And something I noticed lately is that he asks to be picked up, and when I pick him up, he doesn't snuggle in and cling to me.  He's awkward and hard to hold - leaves his legs dangling straight down, or curls his legs up and knees me in the belly each time.  He wanted to snuggle with me on the couch yesterday, but kept elbowing me and headbutted me in the mouth pretty hard on accident.  I think he kind of lacks a sense of the other person. 

DS is who he is, and I love every part of him.  <3 

[Tigerle]

Originally Posted by Eloisa 

Tigerle, would you mind clarify a bit? What sort of behaviours was your son displaying?

This is one of the threads I had about it - the input I got was extremely helpful for me, maybe it will be helpful for you too...

http://www.mothering.com/community/t/1297674/new-update-with-dx-or-not-differentiating-gifted-oes-intensity-sensory-issues-from-asperger-s-syndrome-btdt-advice

edt to add the cross-post, great stuff in there too.

http://www.mothering.com/community/t/1297676/differentating-gifted-oes-intensity-sensory-issues-from-asperger-s-syndrome-btdt-advice#post_16258925

I do not post that often in the special needs forum, because without a diagnosis, I feel unsure whether I "belong" or whether its inappropriate, hope you kwim. I know that's proabably ridiculous, it's just not like things are always that clear-cut...

It's okay to feel overwhelmed and helpless and conflicted.

[Eloisa]

Thanks for the links, Tigerle :)

I am lucky that DH is agreeable in getting DS assessed. He agrees that there are definitely sensory and social issues for DS. The trouble I'm having is that without a diagnosis, if I discuss different ways to handle DS, and give information about how DS may view the world in a different way, it also comes back to "What if?" What if he isn't on the spectrum? I'm so sure he is. But I can't diagnose him. We don't see the Paed for months.

I'm starting to worry that his symptoms are getting more intense. He's been getting really stressed out when we go to a playground with lots of kids around. Yesterday we had the monthly babywearing meet I organise. The park was empty, apart from our group of about 7-8 women and their kids. 3 women and their children, we knew, and the rest were new (but there were only 2-3 unknown toddlers) And the whole time he kept asking me to come with him, to go near the playground, get a toy, go near the fountain etc etc. He didn't play with the other children at all, and had multiple very intense meltdowns. But as soon as we got home, he put of "Trains", and was totally quiet, happy.
I've also noticed, more and more recently, that he's chewing on his hands, licking his toys. He makes this weird, open mouthed (kind of 'surprised' look, I suppose. Without the wide eyes), whenever an adult talks to him. Or turns and looks from a side angle.

I'm also wondering about the whole context and pretend play. He loves trucks, loaders, trains, trailers, cars and helicopters. He carries one or more of these around with him constantly. He makes beep noises, picks things up to put in the trucks etc. Sometime he plays with playdough and says things are trailers. Or plays with sand or water, and says things are helicopters, trailers.. Occasionally he'll pretend to make tea or pancakes with water and/or sand, although this only began when I did it with him a while ago. Are these considered pretend/imaginary play? Would this indicate no ASD?

Also, I've been wondering about questions. I've noticed other children around his age (some older, some younger), asking questions like "Why doesn't he want to play with me?" Will you do x, y z?" "Why is he doing that?"
Charlie's questions consist of "Where's Daddy, Mummy etc?" (This is often repeated over and over ever once answered, and sometimes asked with Daddy is standing next to him) "What you doing?" (Although he doesn't appear interested in the answer) and "Where's that come from?" Asked in reference to has particular interest. A part on one of his cars, a string hanging off something (he's quite interested in strings), electrical cords (always been interested in anything with a cord). But definitely nothing like "Why doesn't he/she want to play with me?"

I think I must be over analyzing. Sigh. Thanks for listening all.

[cristeen]

Originally Posted by Eloisa 
I'm also wondering about the whole context and pretend play. He loves trucks, loaders, trains, trailers, cars and helicopters. He carries one or more of these around with him constantly. He makes beep noises, picks things up to put in the trucks etc. Sometime he plays with playdough and says things are trailers. Or plays with sand or water, and says things are helicopters, trailers.. Occasionally he'll pretend to make tea or pancakes with water and/or sand, although this only began when I did it with him a while ago. Are these considered pretend/imaginary play? Would this indicate no ASD?

Pretend/imaginary play is only one possible indicator.  The way the assessor explained it to me was that there are 3 categories they look at, and within each category there are 4 items.  That in order to be "on the spectrum", they need to have at least 2 items in each category.  But each item is a broad range of things, it's not a specific.  She said she's been assessing kids for over 10 years, and she'd never seen 2 kids with the same set of items, or scoring in the same way.  I know she indicated that my DS' obsession with telephones would be considered pretend play/imagination, yet she still gave us an ASD diagnosis. 

HTH

[Altair]

Originally Posted by Eloisa 

I'm also wondering about the whole context and pretend play. He loves trucks, loaders, trains, trailers, cars and helicopters. He carries one or more of these around with him constantly. He makes beep noises, picks things up to put in the trucks etc. Sometime he plays with playdough and says things are trailers. Or plays with sand or water, and says things are helicopters, trailers.. Occasionally he'll pretend to make tea or pancakes with water and/or sand, although this only began when I did it with him a while ago. Are these considered pretend/imaginary play? Would this indicate no ASD?
 

No, it wouldn't.  I work on an evaluation team for children with ASDs and this type of play is extremely common among children with ASDs.  (and in fact that type of object play is commonly seen when kids are getting an ADOS) The type of pretend play that you don't typically see if the kind of shared imagination, reciprical play between 2 people.  At 3, kids are just starting to be able to play with someone else in a way that incorporates both of their ideas because they are existing in a kind of imaginative world that they are both referencing. 

So one kid will say "I'll be the firefighter" and the other kid will say "Ok, I'll be the lady trying to get rescued" (or, they don't even say this out loud, and just start doing it) and BOTH kids are able to mold/shift/change the scene as it goes along and both are able to follow the new aspects and incorporate it into what they are playing. 

There were many points in your first post that made me think as a parent I would want to start the eval process in order to get more information, as scary as that sounds.  Yes, you listed many things that are typical of kids with autism, but no one can make a DX online and there are so many nuances to behaviors.  But the right kind of early intervention for kids at your son's age can make a WORLD of a difference in a crucial time for the brain to learn about social interactions.  It does not do a child any advantage to wait until they miss more and more social opportunities to learn from their peers.  You did the right thing, good luck!  

[Eloisa]

Thank you, everyone, again! Especially Altair. It's been so helpful for me having here to come and write out my concerns.

We're still waiting for confirmation of his appointment with the ped. But that should be in Feb, I'll do my best to find time and update properly later. Thank you all so much for your kinds words and support.