5yo daughter...serious issues, unsure what to do (autism, add? Something else?)

[lightheartedmom]

Originally posted in mental health...was told you moms have some great insights with these things. I would be so grateful for any advice!

I'm not sure I can do this post justice with my iPhone as my sole computer but I really do have to try at this point. 

Dd will be five in a week. She has always been a little quirky. Extremely outgoing with everyone, a few strange self-stim-ish behaviors, some fears that were wildly overblown (Uh. Bugs and plants??)...

We addressed things as they came up with her ped who always just brushed them off as no serious cause for concern. 

But now...i am really and truly concerned. We recently went through a very traumatic move...basically our bad bad landlords were totally negligent and also liars and their malfiecence led to us suddenly being forced to move. DD has been very upset by the suddenness of the move and confused. And to make matters worse we don't really have another home at the moment. We are staying with obliging relatives right now and since dh also lost his job in november...prospects aren't good. We are doing our best to maintain a comforting and loving and secure environment for her but she recognizes the upheaval and it has seriously turned all her "quirks" on overdrive. 

Here are my red flags:
- near daily catastrophic meltdowns at the sight of any bug, spider or fly in the house. 
- (this is new in the last month, since the move) obsessive focus in getting small hairs or fabric fibers off fingers. If we don't catch her, she will go through periods of the day trying to wash her hands every minute to "get the hairs off." I am alarmed, to say the least. She freaks out if she sees even a tiny little speck of a hair on any of us, especially her little sister and we have only avoided more catastrophic meltdowns by rigorously accommodating this phobia. 
-  She does. Not. Listen. I have to repeat requests over and over again and often cannot get her attention without yelling (horrible, I know). A lot. Too much yelling. And she doesn't pay attention...to anything. I have been homeschooling but we are having more and more trouble with lessons because she will focus for .5 seconds before getting bored or wanting to give up. I don't want to pressure her with school...if anything we've followed a montessori-ish unschooling approach with everything except reading and writing which I am sort of anxious for her to learn (in the hopes that being able to read and write for herself will expand her world and boost her confidence).  She just doesn't focus, doesnt listen and doesn't obey without LOTS of babysitting and harping (which means mommy = bad guy). 
- has not stopped the self gratification-y behavior she started at 9 months old that the doctor swore she would grow out of by 4. She does it way less than she used to but she still does it sometimes...
- she loves people and is very engaging with everyone she sees (to an extreme) but she doesn't look people in the eye when she's talking (despite our trying to teach her that) and seems oblivious to the social cues people give (ie busy, not interested, don't understand, etc). The other day we played on the playground and there were lots of kids there. She seemed to play with them, even though a few of them gave her weird looks when she started rattling on about her dreams (see next). She's not really "in her own world" most of the day...she does interact with us...
- the dreams...she is REALLY into her dreams. She sleeps with us right now and several times weve been smacked in the face by her in the midst of a dream. She wakes up daily with vivid recollections of her dreams and when she has a good one, she excitedly tells us she's "unlocked" a new dream. She also draws distinctions between "picture dreams" and "video dreams" - we havent quite figured out what the distinctions are exactly but...they seem important to her. 

There are other things but those are the biggees. The ones that make my dh and I look at each other and feel like we're staring down that scary black hole of mental disorders and therapy and "What did we do to her to cause this?" guilt. 

Does this sound like anything to you? What? Any advice for treating? Helping her adjust? Avoiding drugs (this is big for us)?

She has a check up in two weeks but I hardly even know where to start. 

Pretty overwhelmed right now... :-( I hate this feeling that she's slipping away from me in some way. And I don't know what to do to help her...

[bl987ue]

You sound very worried, so the first thing you ought to do is have a thorough evaluation of your DD.  I think that you can ask for one through the public school, since she will be old enough to start kindergarten this fall. She is still very young, though, and a lot of things like ADHD and Asperger's are hard to diagnose in kids that young.  But you are worried, and I think you ought to have the little one evaluated, if for no other reason than to help your own fears.  A lot of what you write sounds like just being immature, but that is one of the things with ADHD in particular--kids with it are behind in maturity, sometimes by 2 or 3 years.

(Parent of child with ADHD and Asperger's here, BTW.)

[Piglet68]

I'm pretty new to all this, having just figured out my kids have Asperger's. But I can relate to your worry, your seeing that things are getting better overall, but not fast enough that you think they'll be gone by an appropriate age. I only know about AS because that's what I've been reading about, but many of the things you describe would fit. The OCD-type behaviour, the rages at little things (especially made worse by the move; my daughter *really* doesn't like change of that nature), the not looking at people in the eye, going on about her interests, etc. Of course, it could be other things I'm not knowledgable about. With AS they say it really can't be diagnosed before age 5, but I recommend asking around your parenting community and find out who is considered a good ped/psych in your area then get an appt with them (I'm in Canada so the process is likely a bit different). 

Mostly just know that I had many days where I felt as you do now, and I'm sure all the mums on this thread can sympathize. hugs!

[lightheartedmom]

We are not planning on enrolling her in kindergarten in the fall so I'm hesistant to go to the public school system for testing. She's having her five yr check up with our normal pediatrician next week so I will be talking to him about all of this...

Piglet, my heart just sinks when I hear about things like rage about small things and difficult with change...we are so there. The change not so much, I think it's reasonable that DD is thrown off by this crazy move. Heck, my cycles have been totally fracked up since it happened. We're all pretty much traumatized. I'm just worried that it may end up as a trigger event for issues that have previously been mostly latent in DD.

I just wish there was some way I could get through to her...I feel helpless and I know as hard as it is for me to deal with this stuff, the way she's experiencing all of this has got to be even worse.

Thanks for the advice and comfort. Best wishes to both you mamas.

[lindsayinnc]

No real insight into your daughter's specific needs but about the school system.  You can get testing and services through the school system even if the child is homeschooled.  I am an SLP in the school system and have seen 2 students that were home schooled.  The parents brought them to the school for services.  There is typically a limit to the amount so it is not quite as intense as if the child were in school but atleast a start and free to you.  I know in our county there is a grant program that helps make this available to students but all students should have access to services.  Good luck and I hope things get better for you and your family!

[Linda on the move]

Originally Posted by lightheartedmom 

We are not planning on enrolling her in kindergarten in the fall so I'm hesistant to go to the public school system for testing. She's having her five yr check up with our normal pediatrician next week so I will be talking to him about all of this...
 

a regular pediatrician isn't qualified to figure this out. He/she doesn't have the education or experience. Services ARE available, paid for through tax dollars, and they come to her through the school system. That's just how it is set up, and those services are available to her even if you homeschool.

[LynnS6]

Originally Posted by lightheartedmom 

We are not planning on enrolling her in kindergarten in the fall so I'm hesistant to go to the public school system for testing. She's having her five yr check up with our normal pediatrician next week so I will be talking to him about all of this...

Ask for a referral to a developmental pediatrician, because as Linda pointed out, your regular doctor is not qualified to make a diagnosis. List your concerns (I'd actually take a list like you've given us (but without the commentary ;):

-Catastrophic meltdowns at the sight of bugs in the house

-Obsessive focus in getting small hairs or fabric fibers off fingers; periods of the day trying to wash her hands every minute to "get the hairs off"

-We cannot get her attention and she cannot focus on anything for more than a few seconds

-Self gratification X times/minutes per day

-She doesn't look people in the eye when she's talking (despite our trying to teach her that) and seems oblivious to the social cues people give

-Obsessive interest in her dreams; oblivious to others' cues that they're bored with her dreams

[Linda on the move]

Originally Posted by LynnS6 

Ask for a referral to a developmental pediatrician, because as Linda pointed out, your regular doctor is not qualified to make a diagnosis.

I doubt that they have insurance. I suspect they are going the publicly funded route on this, and that's through the public school.

I highly recommend checking into how much visits and evaluations that are done outside of the school will cost and be paid for BEFORE getting them. Adding thousands of dollars of debt will not help your situation.

[beachcomber]

Just based on the items you listed in your post, I'd do the following in your situation:

1. request a referral to an Autism diagnosis (if nothing else, it'll rule it out, right?).

2. if your ped or GP is reluctant to do this, get another one and make the request again.

3. if you can't afford a dev ped, and are going through the school system, make these requests of your school, the school board, etc. Schools can take a very long time so be persistent. Call every week, every few days, whatever it takes for you to get what you need from them.

In the meantime, here are some ideas that may help you with your daughter's tantruming, lack of attention and poor eye-contact

1. get down to her level to give an instruction or communicate with her and if you need to hold her chin in your hand to speak to her, do so.

2. do a behavior inventory over a few days. Write down what she's doing and look for triggers. Pick one behavior at a time to focus on once you've determined which things need to change. Look at your responses to her behavior. Are you feeding the fire through providing negative attention? Kids don't differentiate.

3. praise, praise, praise any of the behavior you want to reinforce like paying attention, being calm, reading, writing, drawing, anything you want her to be doing.

4. ignore, ignore, ignore the behavior you don't want to see. This can be extremely hard. I can't even begin to tell you what a challenge this really is. If she's tantruming over spiders or fluff on her fingers, IGNORE it. BECOME SWITZERLAND. You don't even SEE it, you have no reaction at all. At first this will make the behavior worse (behavior therapists call this an extinction burst) but it will begin to improve.

I have a daughter who is 5 1/2 and very similar to what you describe. She is on the autism spectrum at the high functioning end. The only thing that has worked with her behavior is to pick our battles. We don't take on all her behavior at once but once we focus on a thing that needs to change, we are extremely consistent in how we approach it. Never waver once you make a plan.

[Aufilia]

I would call the school district and ask for an evaluation, even if you aren't planning on entering public K.  They may be required to provide services to you even if you aren't a public school student (I'm a little vague on what the actual requirements are, it seems to vary from place to place, but I did talk to some private school parents who took their children to the public school a couple times a week for services, so I imagine they do the same for homeschoolers).  Plus, I don't think they can turn you down for an evaluation, and it's free.  It sounds like free would be a good price given your current family situation.

You might also set up an evaluation with a pediatric neurologist.  You regular ped may be able to refer you to one--it might be worth doing some research and finding one yourself and asking to be referred to that specific one.  Or if your insurance doesn't require a referral juts make an appointment.  The pediatric neurologist will fiugre out what's going on and give you suggestions on what to do next.

[OTMomma]

Has there been any big change to your dd's diet with the recent move? I ask because my oldest, who has been a high strung odd child, just got diagnosed with a long list of food allergies a few weeks ago and some of the foods she was eating at every meal- like wheat. Since removing most of the offending foods from her diet, she has become much more even tempered. Professionally I have worked with some autistic kids that have had similar results, it didn't cure the child, but a lot mod difficult behaviors improved with diet changes. My kids also react poorly to artificial colors in their foods.

I am not saying not to do the other assessments suggested, but doctors rarely suggest looking at food allergies, which can be checked with a blood sample in an IgG test.

[LessTraveledBy]

Originally Posted by lightheartedmom 

Piglet, my heart just sinks when I hear about things like rage about small things and difficult with change...we are so there. The change not so much, I think it's reasonable that DD is thrown off by this crazy move.

Now, I cannot say that your dd has no issue caused by something that could be diagnozed. However, the rages, not listening, etc. are, IMO, totally normal behavior after a big change. Same thing with at leasts some ocd like behaviors. Our dd is normallu very calm and "reasonable" but we went through something very similar after a move, at the exact same age. I also have experience with kids "reading" my emotions and reacting to them, even when I have tried to hide them (both with dd and kids at school, BTW, especially the kids with Aspergers). They can be hugely affected by the adults. Since you are stressed yourself, have been yelling, etc., I think you will need to wait for quite some time until you will see what really has taken place simply due to the move. Weeks, maybe months.

[Roar]

I agree with many of the suggestions in the thread. In addition, I would strongly suggest that you find whatever ways you can to put calm routine into her daily life during this disruptive time. That means - eating and sleeping at the same times daily, having a routine of scheduled play and exercise times. Doing stuff in the same order each day. Be predictable and cheerful. Involve her in making charts to set up daily routines. Whatever ways you can create structure and predictable routine will be helpful. I would try this for a bit and then look at an evaluation.