My daughter is slipping away, help, advice please

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Well, I am going to offer the dissenting opinion and say that what your daughter is doing is fairly normal for children in her position. It isn't caused by Asperger's Syndrome per say, but by the constant stress of being in a world that isn't designed for her. What you are describing is known as disassociating behavior.

If you are interested, there is a wiki page for it:
http://en.wikipedia.org/wiki/Disassociation
It is mainly associated with abuse and neglect. But anything which causes stress, or anxiety can do the same.

To some extent, this is a healthy reaction. She is learning to withdraw herself and put some distance between her and reality. It is a coping technique that I developed when I was about age 10 or so. It got me through the worst years of my life. When she watches TV, and zones out, that is when she gets to process the events of the day, go over what happened, and figure out what is really going on. This is a healthy thing that your daughter will need to learn how to do if she is to make sense of the world.

If you read the book I sent you then you will remember that I said it is important for people to get the chance to just unwind, and relax alone. This is exactly what your daughter is doing when she zones out while watching TV. I do the same thing myself.

She is still new to the practice of disassociating, so she might occasionally disassociate to much and start talking in 3rd person, or something else. But just be patient. She will find the right balance with more experience. In the mean time, just give her some space to zone out, and process things. I wish I could explain what she is going through, but unfortunately the only way to explain it is to experience it. Just try to remain calm, tell her that you love her, try to stress her out less, and give her plenty of space. She is going to have to work the rest out herself.

Sometimes I read a thread and I'm glad if what I posted might have been wrong

Maybe if a little bit of everything, but I think you're figuring it out.

This sounds so much like my son at the end of the school year last year, right down to the frightening self injurious meltdowns and saying "you're not my real mom" and other strange things in an eerie way like he really believed it. We would have mornings where he would try on everything in his closet (clothes all carefully selected and previously considered comfortable by him), ripping each item of clothing off, tearing at his skin, crying, eventually ending up huddled in a blanket howling unable to tolerate any clothes on his skin at all. It was to the point that the psych was concerned about possible bipolar. I was terrified for him.

In our case it turned out to be school stress, and we actually thought his school situation was pretty good. No bullying, fairly sympathetic although unobservant teacher, a couple of friends etc. but we did not have an IEP for him yet, and he needed way more support than he was getting, even though everyone at the school thought he was doing OK. As he struggled to keep up with his peers academically and socially, his stress was slowly mounting throughout the school year until it all started spilling out in his behaviour during the last few months. Things got even worse for the first couple of weeks of summer while he was starting to decompress, but by the middle of summer he was his old curious, funny, engaged self again. It was a huge lesson to us about how poor his quality of life at school really was, even though we constantly heard about how "well" he was doing, and how much we have to fight for accommodations for him, because even if he appears to do OK without them at first, the stress will accumulate and really hurt him after a time.

I think, by all means, check out any possible physical causes like other posters have said, but it may just be that your daughter is plain and simply under more stress than she can handle. Starting with a new babysitter would add another big chunk to her stress levels, as well as the transition from school to holiday (change is hard even if it is a good change).

Last summer we put both sons on a sort of a stress diet. Lots of relaxation. Lots of sensorily calming activities that they enjoy. Lots of opportunities to feel successful after a year of constantly feeling like he'd failed at school. We fed them healthy foods, but foods they liked. Read books they liked. Carefully chose and limited our outings etc. Basically we made it 2 months of quiet, healing time (we did not go on vacation, but did a "staycation" at home), and my son who was so beside himself with stress was a different kid by the end of summer. Luckily I am a SAHM, so I could orchestrate all this, but you may need to find a way of making this kind of healing retreat for your daughter.

And then this year at school, we felt it was our make or break year. Either things improved dramatically or next year was home schooling, because the level of stress that our sons were living with were simply unacceptable and were damaging one son in particular's health, self esteem and functioning in every way. It hasn't been easy, and we are very lucky to have an amazing resource teacher who has worked her butt of for us this year, but things have improved immensely for my son. He is tired and a bit ragged, and all "social-ed out" but nothing compared to last year.

I hope you find some answers for you daughter too. This must be so tough on both of you. I know.

Guess what? The koolaid did have Red 40 in it. So yesterday was a no food coloring day. She did better, although she was volatile in the afternoon. Perhaps it was a combination of things. I am going to request a full work up-vitamin levels, etc.

I don't think she has Tourette's. She has no tics or other symptoms.

The hair eating is common in trich: it is called trichophagia. She doesn't do this often but will eat the eyelashes when she pulls them. I think this is compulsive and related to OCD/stress.

Tracker you are so right that daily life in a difficult world is very stressful for her. I will try to do more to ease that although I am doing a lot now and worry about her continued sensitivities and fragile nature.

Thanks to everyone for you help...I have a few good leads to follow though with.

I'm new to all this and can't offer any suggestions. I just wanted to say I think you are an AMAZING mom, and you're doing a terrific job of researching and trying new things to help your daughter. It's difficult when things that work one day don't necessarily work the next, and there's no one right perfect solution -- just a myriad of tiny adjustments.

I also think it's incredibly important that you have an outlet for your stress -- whether it's coming here to this forum (even just to vent), or doing yoga after your daughter goes to bed, or whatever.

Keep pushing your doctors to help you find the answers. Keep reading, keep talking to your daughter. And be proud of the job you're doing as her mama. You rock.

The first thing I want to say is:

You can do this.

While your daughter being overwhelmed is one issue - YOU being overwhelmed is the FIRST issue. You can't help her if you are overwhelmed. The most important thing right now is that you are TRYING - you are seeking the right approach and you just haven't found it yet - but you will. I am very impressed by how hard you are TRYING.

What I'm hearing in your words is that you are feeling desperate, grasping at alternatives, and yet things are getting worse for your daughter. As Dr. Phil would say "how's that working for you?". If it's not working, it's just time to try a different approach. And you can do that. Just take a deep breath and start with a comforting knowledge that there are lots of resources available to you.

I think there are 2 issues for you - one, your daughter needs something she's not getting (as DW said) and two, you sound scared. I suspect the second is the result of the first. I suspect your daughter's "strangeness" is because she is so dysregulated. There may be more going on - she may have a comorbid condition, but you can't really figure that out until you get her regulated, so let's start with that.

For myself, I find that I feel less overwhelmed if I can name exactly what is overwhelming me, item by item, and then start making a plan of action for each one.

1. If you must use the 13 year old - did you train her first? Specifically train her in AS, what to expect from your daughter, what to do if certain behaviours appeared? This is something I've learned the hard way - that with AS kids, you cannot just plop them down in a new situation - even if it's a good situation - and expect everything to be ok. You need to make significant preparations for both the people working with her and she herself.

I have a pamphlet on my blog (sidebar link) that goes over some typical AS behaviours and management strategies for caregivers. I've used it for daycamp workers for my son, sunday school teachers, etc. Feel free to print it off and use it (www.welcome-to-normal.com).

2. If you are 5 mins away from your daughter and could just walk over - then do it. Walk over once an hour at first, then once every 2 hours, etc. Check to see if your intervention or just the comfort of knowing you are coming to check on her, helps to calm her.

3. You mentioned she wants pressure at the end of the day, and that you can't always tell when she's in sensory overload. Here's the thing about the sensory diet: you shouldn't have to. The goal is not to apply pressure at night when she's bottled everything up all day (as you know there are days she can't keep it all in - the bad days), nor is the goal to watch all the time for sensory overload - the goal is to provide frequent regular sensory input that keeps her calm and regulated throughout the day, so that overload doesn't occur. This is really hard to accomplish - and you will slip up or have days that it's just not doable - but if you force yourself to give her the sensory input she needs - and TEACH her to give it to herself over time - it will be 100% worth the effort, and you should see results in her behaviours. When I start slacking off on this - I see huge changes in my son's ability to cope within a few days. He's also 7.

If you are 5 mins away, walk over and do joint compressions, slap chops on her back (karate type back rub), bear hugs, install a chin-up bar, use a rolling pin on her, etc. When my son is at daycamp my husband visits him every lunchtime to give him a sensory break - HUGE reduction in behaviour issues.

4. You also need to leave a schedule with the babysitter of activities and rules. Set out activities that are sensory friendly - painting, playdough, no-bake cookie making, sensory walks with an egg carton to collect treasures, etc. Stipulate how much and when the tv is on while the sitter is there. The Out of Sync Child Has Fun is a book that I would HIGHLY recommend you get to help you plan activities for you - and the babysitter - to do with your daughter. This is a lot of work - it isn't easy - but it's THE ONLY WAY. No pain = no gain is so true for parents of kids on the spectrum. We have to be willing to put in this effort to see the results.

5. If you don't have a good Dr. GET ONE. I know that's easier said than done but I mean it - DO NOT stop until you find one.

6. If the school is not giving her the accommodations she needs then MAKE THEM. Again, this is a challenge, but you cannot give up until you make it happen. This is another huge lesson for parents of spectrum kids - you are the ONLY advocate they can truly count on. I recently had to write many letters and place many phone calls AND even call in personal favours from people who had connections in order to get my son's case reviewed for school funding. Before I started my massive lobby attack on my local government reps, we were told it looked like he would get no funding whatsoever. When I was done - all the way up to our Premier's office (equivalent of your Governors, if you're in the States), I had secured him guaranteed one-on-one educational assistance 50% of every day until 2024. So you HAVE TO PUSH - and you have to KEEP PUSHING - moving up another level everytime you hit a wall - threatening to go public with your story if you have to - until you get what your child needs.

After all of that is done... see how she does. If you are still concerned about 'strange' behaviours, talk to her doctor - that would be the fantastic new doctor you will have found for her by then

Also check out Empowered Autism Parenting, and The Everything Guide to Parenting a Child with Aspergers, both by William Stillman (who has Aspergers himself). There's a very moving interview with him on my blog as well, if you'd like to read it. I personally find him very inspiring, and I think of him often when I'm 'in the thick of it' with my son.

Best wishes, you sound like a very caring and concerned mama - you just need the right resources

Caitlin, you're right I AM overwhelmed! I feel like every day is a minefield. I come on here and read from adult Aspies about how their childhood was horrible-about how no one understood them. I try so hard to understand her and make things easier. I read all the books I can get my hands on. I have her in OT, I have tried listening to the Drs and putting her on meds, I've tried withdrawing from society altogether. This morning my neighbor rang my doorbell in hysterics because he had to take his youngest daughter to the ER and dropped his 2 older girls on me and said can you please watch them? Well, they came in and my daughter was very upset. The girls wanted to play with my daughter's things and everything they touched made my daughter yell at them and burst into tears. I had to separate the 2 girls from my daughter and overheard them whispering about how she was "so weird". They were here 5 long hours while I did my best to keep everyone separated and calm.

This is just today's example of how things are difficult.

My daughter is anxious about everything it seems. She never grew out of separation anxiety, she's frantically afraid of the dark, she even calls for me from the bathroom because she's afraid to be in there alone. Our house is very safe and calm-I can't seem to figure out what she needs to feel safe. She's never watched network tv or been exposed to violence. My mother and I were taking her to therapy and we came upon an accident which very severely upset my daughter. The police officer spoke to us as we passed which mortified my daughter. I just can't protect her from everything!! !

She has a calm down spot in her room. I created this at the suggestion of an adult Aspie I know. It does help somewhat if I stay there with her and talk her though breathing and calming down.

As I said, she eats healthy foods. It's hard for me to think foods may be the culprit but I am open to finding out if that's it.

I do have The Out of Sync Child has Fun. We do many of the activities. We do the sandwich with the couch cushions (she likes that the most). We do Willbarger brushing and joint compressions. She is a very active girl-constantly in motion.

I am at a loss on how to find out what she needs that she's not getting? If you asked her she would say to be with me 24/7. If you asked me I would say to eliminate the anxiety would solve it all. But how do you go about this?

As far as school-well this is the problem area!! !! I meet with the principal monthly, the teacher daily, etc, etc, etc. Every time my daughter has a meltdown at home and I can do a social autopsy that sheds some light on what might be the trigger I am at the school the very next day to try to change it. I really think the school thinks I am an overindulgent parent that is causing her anxiety. They know she is "different" but they see how smart she is (she scored top of her class on the end of year math benchmarks) and think she'll be fine. I went through the IEP meeting. They denied all services. I protested and asked for an IEE. They said I didn't need one and told me they'd do anything my daughter needed. I have to say the principal does sometimes act as if she wants to help. It's just that she is in the same boat as I am...how do we help her? They gave her a pass to see the counselor-my daughter won't use it-she's too afraid. This year will be the make or break year I feel. They had to make so many changes for my daughter that I think this year it will only get worse. Now the kids will be a year older and less forgiving on her differences. This year her inability to write well will get in the way. Last year they said she just wasn't applying herself. HOW DO I MAKE THEM DO WHAT IS NECESSARY? How do I make them figure out how to make her experience anxiety free when I can't even figure that out at home? I have documentation on her struggles but how do I take that in and make them do something?

I did train the babysitter. I stayed for a while the first day. I have notes and lists of activities and my daughter seemed to like her. My daughter seems to be coping better with the babysitter since my first post. I have crafts lined up for them each day.

I did read the interview on your blog and I will check out those books you mention. My bible thusfar has been the Tony Attwood book The Complete Guide to Asperger's. I've read several more but that is the one that seems most applicable to my situation and spot on in the descriptions of her struggles.

Thanks so much for your post. I really take very seriously everyone's suggestions here. This site has been so helpful to me and yes, I have been coming here to vent! It is nice to find a place where everyone seems to "get it". Our lives do seem to be as though we're living on the "wrong planet" that's for sure.

How can they deny services? If she has a diagnosis of autism, she should qualify for OT, PT, etc.

The Houston chapter of the Autism Society of America has some detailed information on the Autism Supplement to the Texas Individuals with Disabilities Education Act. Here's the link: http://www.houstonchapterasa.org/Education.htm Scroll down the page to where it says NEW Texas Education Law (it's not really new, it's from 2007).

It sounds like you are doing TONS of things right. That leads me to three questions:

1) how significant is the anxiety at school? Is she suffering tremendously? If so, all the work in the world you do at home won't help alleviate it. That means it's time to go over your Principal's head - first let her know that you will be doing that if you don't get the IEP you want. Give her a deadline for serious action. What level is over her head where you live? Here it's the School Division and Superintendent of Schools. Copy all correspondence to your local government reps and follow up with them.

2) when your daughter has anxiety, what's your reaction? Do you "indulge her" as some would say (I would say accommodate and reassure her) by allowing her what she needs to feel safe (bathroom door open, etc) or do you insist on "growing up" and attempt to force her to get used to uncomfortable situations on her own? I ask this because I know a lot of parents tend to go the latter direction and I personally feel this greatly increases a child's anxiety. My son had many of those same fears over the years and I "indulged" him every step of the way until gradually he became confident that he was safe to do things on his own. Many of those anxieties have now fallen away. Have you heard of CBT (cognitive behaviour therapy)? This can work wonders for anxiety.

3) if she is not really super-anxious about school, and she has tons of sensory accommodations at home, then I think you need to focus on finding a good doctor (or getting referred by your current doctor to a child psychiatrist) who can assess your daughter in case she does have any comorbid conditions.

You also need NEED to make a short list of things that will help YOU feel less overwhelmed. Hartley Steiner has a great blog focussing on sensory issues and she's featuring a once-a-month series all year called First Things First - all about caregivers looking after themselves FIRST in order to be the kind of parents our kids need. Check her series out at www.hartleysboys.com

The anxiety at school is extremely significant. She begs me each morning not to take her. She will double over with stomach aches saying she is too ill to go to school. She has extreme agitation at home after school. She will fixate and talk about and act out what happened during the school day. She will script things the teacher said during the day. She clings to me when I take her into the classroom in the morning. Her teacher has to physically pry her from me as I turn around and leave. I have extreme reservations about making her endure the anxiety that school provokes in her.

She has always been this way in every school setting she's been in. She started a preschool at age 3 and they said "oh she'll get used to it" but she never did. She has never once gone willingly. She has hated any group activity I have ever tried to get her to do. Even at age 2 in the public library for storytime she would never go near the other children. She clung to me and watched them. Whenever anyone would approach me and say hi when she was an infant (and she still does this now) she would turn away from the person. Even now at age 7, she will not shake someone's hand upon meeting, or look them in the eye, or acknowledge them. She might reply under her breath a hello if she's met them before.

She's able to connect with and bond to people when she can interact with them one on one (or them + me + her). I think she is able to bond with and trust her teachers but it is the presence of the other kids that creates the anxiety. She is very controlling, and is obviously unable to control a classroom of twenty 7 year old children.

I started out over the principal's head in the beginning of my fight. After failure with the higher ups (district people) I found the principal really wanted to help. She fancies herself "knowledgeable" about AS but told me once it couldn't be dx as young as my daughter. Therefore I think she coddled me for the first half of the year, until my daughter started having some real issues that were causing disruptions for the teacher (demanding a lot of attention) and absence from school. She started really trying to create interventions but they ignored my list of requests. I asked for earplugs in the gym. I asked for the pass for the counselor (they finally did this one). Her controlling teacher who did not want the district, nor any parent, nor any aide, nor the principal breathing down her neck tried to grandmotherly, tough love, dissuade my daughter from using the interventions. This caused more and more anxiety and stress. They did get her a one to one aide in special situations such as assembly or field trips but nothing the rest of the time. It got so bad by the end of the year I was just sending notes to school, angry notes, saying "XXXXXX is NOT to be taken to the gym again this year!" They did as I said but towards the end I saw my daughter's teacher "briefing" the next year teacher, no doubt about how difficult I am.

I don't know how to make them do more for her but perhaps that is the THING she needs that everyone is referring to. Perhaps all that fear and anxiety during school has just made her a nervous wreck.

On your #2 questions I do have to admit that I would discipline her for her behaviors up till a year ago (at her diagnosis). Up until that time I thought she could be conditioned. Then, with exhaustive testing and analysis by a health/science center neuro phychologist, I was able to see in hard data the extent of her strengths and weaknesses. They explained everything to me very bluntly. I knew then she had some real issues and that I was making it worse by my authoritative position. Now I am probably too lenient, letting her have the space to vent when she needs to. I ignore behavior and statements from her that would be difficult for anyone to turn a cheek to but that's what I've learned to do. I know she doesn't CHOOSE to be/act/feel this way. This is simply the way she is. Her experiences are far different-things can be amplified or muted with no rhyme or reason to the degree. She will whine and moan and carry on about a paper cut and then I've seen her really hurt herself with a large cut and bleeding down her leg and she doesn't realize it. She can become volatile in a moment's notice and go from laughing to screaming at you in minutes.

I am focused so much on the negatives here but there are the positives. When it is me and her in our home or a place she loves she is warm, witty, expressive, helpful, and smart. There are days that I think she's ok-that's it's all just a big mistake and she's coming out of it. She loves to sing, cook, garden and she's very very good at math. She has always been drawn to patterns and geometric shapes. She now writes numbers in geometric shapes and makes patterns with them. She can add six digit numbers. She understands the concept of multiplication.

BTW she has a diagnosis of AS and Developmental Coordination Disorder. The schools say a medical dx doesn't mean anything at school. The only dx that matters supposedly for my daughter, is an "educational dx". And as far as they can tell with her scoring so well, they think she's learning just fine.

I will check out the sensory blog. Thanks!